tag:theconversation.com,2011:/us/topics/blindness-1869/articlesBlindness – The Conversation2024-03-22T12:32:20Ztag:theconversation.com,2011:article/2259552024-03-22T12:32:20Z2024-03-22T12:32:20ZAn eclipse for everyone – how visually impaired students can ‘get a feel for’ eclipses<figure><img src="https://images.theconversation.com/files/583493/original/file-20240321-24-k7j1j4.jpg?ixlib=rb-1.1.0&rect=0%2C5%2C1997%2C1398&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A solar eclipse approaching totality. </span> <span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/Total%20Solar%20Eclipse%20Photo%20Gallery/d4f2edfa2e47448980ce303f299063ae?hpSectionId=8053d9e3a7de4b25a8bccd33428f5964&st=hpsection&mediaType=photo&sortBy=arrivaldatetime:desc&dateRange=Anytime&totalCount=3429&currentItemNo=22">AP Photo/Richard Vogel, File</a></span></figcaption></figure><p>Many people in the U.S. will have an opportunity to witness nearly four minutes of a <a href="https://theconversation.com/what-would-a-solar-eclipse-look-like-from-the-moon-an-astronomer-answers-that-and-other-total-eclipse-questions-81308">total solar eclipse</a> on Monday, April 8, 2024, as it moves from southern Texas to Maine. But in the U.S., over 7 million people are <a href="https://nfb.org/blindness-statistics">blind or visually impaired</a> and may not be able to experience an eclipse the traditional way. </p>
<p>Of course they, like those with sight, will feel colder as the Sun’s light is shaded, and will hear the songs and sounds of birds and insects change as the light dims and brightens. But much of an eclipse is visual.</p>
<p>We are a <a href="https://scnasaepscor.charleston.edu/contact-us/">planetary scientist</a> and <a href="https://www.edinboro.edu/academics/schools-and-departments/cshp/departments/geosciences/planetarium/director.php">an astronomer</a> who, with funding and support from NASA’s <a href="https://sservi.nasa.gov/articles/">Solar System Exploration Research Virtual Institute</a>, have created and published a set of <a href="https://sservi.nasa.gov/books/eclipses.html">tactile graphics</a>, or graphics with raised and textured elements, on the 2024 total solar eclipse. </p>
<p>The guide, called “Getting a Feel for Eclipses,” illustrates the paths of the 2017 total, 2023 annular and <a href="https://science.nasa.gov/eclipses/future-eclipses/eclipse-2024/where-when/">2024 total solar eclipses</a>. In a <a href="https://theconversation.com/what-would-a-solar-eclipse-look-like-from-the-moon-an-astronomer-answers-that-and-other-total-eclipse-questions-81308">total eclipse</a>, the Moon fully blocks the Sun from Earth view, while during an <a href="https://www.nesdis.noaa.gov/annular-solar-eclipse">annular eclipse</a>, a narrow ring of sunlight can be seen encircling the Moon. </p>
<p>The tactile graphics and associated online content detail the <a href="https://theconversation.com/solar-eclipses-result-from-a-fantastic-celestial-coincidence-of-scale-and-distance-224113">specific alignment of the Earth, Moon and Sun</a> under which eclipses occur. </p>
<p>To date, we have distributed almost 11,000 copies of this book to schools for the blind, state and local libraries, the Library of Congress and more.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/583257/original/file-20240320-20-10b7nu.jpg?ixlib=rb-1.1.0&rect=25%2C3%2C2085%2C1553&q=45&auto=format&w=1000&fit=clip"><img alt="A map of the US with three curved lines stretching across, indicating the eclipses of 2024, 2023 and 2017." src="https://images.theconversation.com/files/583257/original/file-20240320-20-10b7nu.jpg?ixlib=rb-1.1.0&rect=25%2C3%2C2085%2C1553&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/583257/original/file-20240320-20-10b7nu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=443&fit=crop&dpr=1 600w, https://images.theconversation.com/files/583257/original/file-20240320-20-10b7nu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=443&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/583257/original/file-20240320-20-10b7nu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=443&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/583257/original/file-20240320-20-10b7nu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=556&fit=crop&dpr=1 754w, https://images.theconversation.com/files/583257/original/file-20240320-20-10b7nu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=556&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/583257/original/file-20240320-20-10b7nu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=556&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">‘The Getting A Feel for Eclipses’ guide helps blind and visually impaired people learn about the eclipse.</span>
<span class="attribution"><a class="source" href="https://sservi.nasa.gov/books/eclipses.html">NASA SSERVI</a></span>
</figcaption>
</figure>
<h2>Why publish a tactile book on eclipses?</h2>
<p>NASA has <a href="https://science.nasa.gov/eclipses">lots of explanatory material</a> that helps people visualize and understand rare phenomena like eclipses. But for people with visual impairments, maps and images don’t help. For tactile readers, their sense of touch is their vision. That’s where this guide and our other tactile books come in.</p>
<p>Over <a href="https://nfb.org/blindness-statistics">65,000 students in the U.S.</a> are blind or visually impaired. After working with several of our students who are totally blind, we wanted to find out how to make events like eclipses as powerful for these students as they are for us. We also wanted to help our students visualize and understand the concept of an eclipse. </p>
<p>These aims resulted in the three <a href="https://www.pathstoliteracy.org/tactile-graphics/">tactile graphics</a>, which are physical sheets with textures and raised surfaces that can be interpreted through touch, <a href="https://sservi.nasa.gov/books/eclipses.html">as well as online content</a>. </p>
<p>The first tactile graphic models the <a href="https://theconversation.com/solar-eclipses-result-from-a-fantastic-celestial-coincidence-of-scale-and-distance-224113">alignment of the Earth, Moon and Sun</a>. The second illustrates the phases of an eclipse as the Moon moves in between the Earth and Sun to full totality, and then out of the way. The third includes a map of the continental U.S. that illustrates the paths of three eclipses: the <a href="https://www.weather.gov/pah/TotalSolarEclipse2017">Aug. 21, 2017, total eclipse</a>, the <a href="https://science.nasa.gov/eclipses/future-eclipses/eclipse-2023/where-when/">Oct. 14, 2023, annular eclipse</a> and the <a href="https://science.nasa.gov/eclipses/future-eclipses/eclipse-2024/where-when/">Apr. 8, 2024, total eclipse</a>. We used different textures to illustrate these concepts.</p>
<p>Each book includes a QR code on the front cover, outlined by a raised square boundary. The code links to <a href="https://sservi.nasa.gov/books/eclipses.html">an online guide</a> that leads the user through the content behind the graphics while also providing background information. With the online content, users may opt to print the information in large font or have it read to them by a device.</p>
<p>Although initially created to assist visually impaired audiences, these books are still helpful resources for those with sight. Some students can see but might learn better when able to explore the tactile parts of the guide while listening to the audio. Often it’s helpful for students to get the same information presented in different styles, with options to read or have the content information read to them. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/583490/original/file-20240321-18-camylh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A sheet of paper with raised textures labeled Sun, Umbra, Moon and Totality, with three students touching the textures." src="https://images.theconversation.com/files/583490/original/file-20240321-18-camylh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/583490/original/file-20240321-18-camylh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/583490/original/file-20240321-18-camylh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/583490/original/file-20240321-18-camylh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/583490/original/file-20240321-18-camylh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/583490/original/file-20240321-18-camylh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/583490/original/file-20240321-18-camylh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Students at Florida School for the Deaf and Blind in St. Augustine explore tactiles 1 and 2.</span>
<span class="attribution"><span class="source">Florida School for the Deaf and Blind</span></span>
</figcaption>
</figure>
<h2>How are the books made?</h2>
<p>We hand-make each book starting by identifying which science concepts the user will likely want to know, and which illustrations can support those concepts.</p>
<p>Once identified, the next step is to create a tactile master, or model, which has one or more raised textures that help to define the science concepts. We pick a set of unique textures to use on the master to signify different items, so the Sun feels different than the Earth. This way, the textures of the graphics become part of the story being shared. </p>
<p>For example, in a model of the Sun’s surface, we use <a href="https://www.britannica.com/plant/Spanish-moss">Spanish moss</a> to create the dynamic texture of the Sun. In past projects, we’ve used textures like doll hair, sand and differently textured cardboard to illustrate planet features, instruments on spacecraft, fine surface features and more. Then, we add <a href="https://www.afb.org/blindness-and-low-vision/braille/what-braille">Braille labels</a> for figure titles, key features and specific notes.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/583492/original/file-20240321-28-ku4w3n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A circle filled with moss." src="https://images.theconversation.com/files/583492/original/file-20240321-28-ku4w3n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/583492/original/file-20240321-28-ku4w3n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=800&fit=crop&dpr=1 600w, https://images.theconversation.com/files/583492/original/file-20240321-28-ku4w3n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=800&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/583492/original/file-20240321-28-ku4w3n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=800&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/583492/original/file-20240321-28-ku4w3n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1005&fit=crop&dpr=1 754w, https://images.theconversation.com/files/583492/original/file-20240321-28-ku4w3n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1005&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/583492/original/file-20240321-28-ku4w3n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1005&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The tactile master – Spanish moss – used for the Sun.</span>
<span class="attribution"><span class="source">Cassandra Runyon</span></span>
</figcaption>
</figure>
<p>Once we’ve finished making the masters and laying out each page, a small family print shop – McCarty Printing in Erie, Pennsylvania – prints the page titles and key feature labels on Brailon, a type of plastic paper. </p>
<p>Once printed, we place the masters and the Brailon sheets on a thermoform Machine, which heats up the sheets and creates a vacuum that forms the final tactile graphics. Then, we return the pages to McCarty Printing for binding. </p>
<h2>Viewing and experiencing the eclipse</h2>
<p>Like fully sighted people, people with partial vision should avoid looking directly at the Sun. Instead, everyone should <a href="https://theconversation.com/total-solar-eclipses-while-stunning-can-damage-your-eyes-if-viewed-without-the-right-protection-221381">use eclipse glasses</a>. If you don’t have eclipse glasses, you can use an indirect viewing method such as a <a href="https://science.nasa.gov/eclipses/future-eclipses/eclipse-2024/safety/">colander or pinhole projector</a>.</p>
<p>As the eclipse approaches totality, take time to enjoy your surroundings, feel the changes in temperature and light, and note how the animals around you react to the remarkable event using another of your senses – sound.</p><img src="https://counter.theconversation.com/content/225955/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Cassandra Runyon receives funding from NASA's Office of STEM Engagment through the National Space Grant Program and the Established Program to Stimulate Competitive Research (EPSCoR) as well as NASA's Solar System Exploration Research Virtual Institure (SSERVI). She is the Director of both the NASA South Carolina Space Grant Consortium and NASA South Carolina EPSCoR program and Vice Chair of the National Council of Space Grant Directors.</span></em></p><p class="fine-print"><em><span>David Hurd receives funding from the NSF and NASA SSERVI.</span></em></p>Eclipses are rare, fantastic celestial events. Here’s how educators can help visually impaired students enjoy eclipses alongside their sighted peers.Cassandra Runyon, Professor of Geology & Environmental Geosciences, College of CharlestonDavid Hurd, Professor of Geosciences, Pennsylvania Western UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2126002023-12-19T13:14:40Z2023-12-19T13:14:40ZDigital inaccessibility: Blind and low-vision people have powerful technology but still face barriers to the digital world<figure><img src="https://images.theconversation.com/files/562793/original/file-20231130-17-d6h2rd.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C6016%2C4016&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Screen reader software converts text to audio for people who are blind.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/accessmattersnz/45982808441"> Access Matters/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc-sa/4.0/">CC BY-NC-SA</a></span></figcaption></figure><p>Imagine that you have low vision and you’re completing an online job application using screen reader software. </p>
<p>You get through half the form and then come to a question with drop-down options the screen reader cannot access because the online form doesn’t conform to accessibility standards. You’re stuck. You can’t submit the application, and your time has been wasted. </p>
<p>Assistive technologies like screen readers go a long way toward closing the gap between people who are blind or have low vision and their sighted peers. But the technologies often hit roadblocks because the information they are designed to work with – documents, websites and software programs – don’t work with them, leaving the <a href="https://accessibility.day/">information inaccessible</a>.</p>
<p>There are <a href="https://data.census.gov/table?q=vision+difficulty&y=2022">8 million people with blindness or low vision in the U.S.</a> More than 4.23 million of them are working age, but <a href="https://data.census.gov/table?q=B18120:%20EMPLOYMENT%20STATUS%20BY%20DISABILITY%20STATUS%20AND%20TYPE&g=010XX00US&y=2022">only about half of that working-age population are employed</a>. Employment rates for people with blindness or low vision have historically been <a href="https://doi.org/10.1177/0145482X19887620">much lower than for the general population</a>.</p>
<p>An <a href="https://nationalskillscoalition.org/resource/publications/closing-the-digital-skill-divide/">overwhelming majority</a> of jobs across all industries require digital skills. Assistive technologies such as screen readers, screen magnifiers and braille notetakers provide people who are blind or have low vision a chance to succeed in school and the workplace.</p>
<p>Assistive technology has improved, and new technology for people with blindness or low vision is being developed all the time. The technology developed today by big tech companies for the general population often <a href="https://www.eastersealstech.com/2021/10/27/big-tech-brands-make-accessibility-mainstream-part-1/">incorporates built-in accessibility features</a> like VoiceOver in the iPhone and Narrator in Windows, both text-to-speech functions. These assistive technology advances have expanded job opportunities, and the percentage of people who are blind or have low vision in the labor force has <a href="https://www.disabilitystatistics.org/acs/2">increased over the past decade</a>.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/PmhpuFM6nuw?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Screen reader software allows people who are blind to read and write email messages as well as browse the web and work with documents.</span></figcaption>
</figure>
<h2>Out of sight, out of mind for the sighted</h2>
<p>But despite the abundance of assistive technology, people who don’t rely on it are typically unaware of how it’s being used at work and the challenges users experience with it. My colleagues and I are conducting <a href="https://www.blind.msstate.edu/research/current/project-1-access-technology-workplace">a five-year longitudinal study</a> to increase knowledge in this area that, we hope, can help prepare unemployed people who are blind or have low vision to enter the workforce. The study is slated to continue through 2025, with the last survey starting in late 2024.</p>
<p>While most of the people we surveyed reported being satisfied with the assistive technology they use at work, almost all also reported <a href="https://doi.org/10.1080/10400435.2023.2213762">challenges with it</a>. The most significant <a href="https://www.afb.org/aw/24/6/18368">challenges related to assistive technology</a> centered on the <a href="https://doi.org/10.1080/10400435.2023.2213762">inaccessible digital environment</a>: documents, software, websites, graphics and photos.</p>
<p>Digital content is sometimes technically accessible but unusable by people who use assistive technology. For instance, online job application systems <a href="https://journals.sagepub.com/doi/10.1177/0145482X231216757">often generate accessibility and usability challenges</a>. Inaccessible and unusable company software means those who are blind or have low vision are often left out of jobs they could easily perform simply because the employers’ software doesn’t work with screen readers. </p>
<p>People who are blind or have low vision have been harder to place in jobs than people with other types of disabilities due to inaccessible company software, Ross Barchacky, vice president of business development and strategic partnerships at <a href="https://www.inclusively.com/">Inclusively</a>, told me. The organization supports companies who want to hire people with disabilities, including matching them with qualified job seekers with disabilities.</p>
<h2>Digital accessibility</h2>
<p>Although the Americans with Disabilities Act does not mention the digital environment explicitly, the Justice Department has taken the position that Title III of the ADA, which covers public accommodation for people with disabilities, <a href="https://www.ada.gov/resources/web-guidance/">applies to websites and mobile apps</a>. Thousands of digital accessibility lawsuits <a href="https://info.usablenet.com/thank-you-2022-end-of-year-report-on-digital-accessibility-lawsuits?submissionGuid=25eec95e-7f14-4db8-a15e-3c0018c63dfc">are filed under the ADA each year</a>, and the number has increased substantially in the past five years. </p>
<p>Digital standard-setters have begun paying attention. The World Wide Web Consortium developed standards for accessible web content: the <a href="https://www.w3.org/WAI/standards-guidelines/wcag/#:%7E:text=The%20WCAG%20standards%20have%2012,determine%20%E2%80%9Cconformance%E2%80%9D%20to%20WCAG.">Web Content Accessibility Guidelines</a>, just revised in a <a href="https://www.w3.org/TR/WCAG22/">2.2 version</a>. The guidelines provide free guidance to help developers make their digital content accessible. Two related standards are the U.S. government’s <a href="https://appt.org/en/guidelines/section-508">Section 508</a> and the European Telecommunications Standards Institute’s <a href="https://appt.org/en/guidelines/en-301-549">EN 301 549</a>. <a href="https://accessibility.day/">Global Accessibility Awareness Day</a> was established in 2012 to encourage people to learn and think about digital inclusion for people with disabilities.</p>
<p><iframe id="Ar207" class="tc-infographic-datawrapper" src="https://datawrapper.dwcdn.net/Ar207/2/" height="400px" width="100%" style="border: none" frameborder="0"></iframe></p>
<p>Despite laws requiring and guidelines supporting an accessible digital environment, much if not most digital content is still not fully accessible. In its latest annual review of the accessibility of the top 1 million websites, the nonprofit <a href="https://webaim.org/projects/million/">WebAIM found an average of 50 accessibility errors per page</a>. Worse, almost all home pages – 96.3% – had <a href="https://www.w3.org/TR/WCAG20-TECHS/failures">Web Content Accessibility Guidelines 2 failures</a>. </p>
<h2>What can be done</h2>
<p>Accessibility can be built in from the beginning more easily than retrofitting after the fact. </p>
<p>For accessibility to be built in from the ground up, accessibility would have to be <a href="https://teachaccess.org/">part of the curriculum for digital developers</a>, but it typically is not.</p>
<p>Companies could require developers to create accessible software and refuse to buy software that isn’t accessible. Individuals can help by producing their own accessible digital documents – inaccessible digital documents were the <a href="https://www.afb.org/aw/24/6/18368">most commonly experienced challenge at work</a>. Microsoft has been working to make producing accessible digital documents easier with its accessibility checker and now with its <a href="https://www.microsoft.com/en-us/microsoft-365/blog/2023/03/08/create-inclusive-content-with-the-new-accessibility-assistant-in-microsoft-365/">new accessibility assistant</a>.</p>
<p>An accessible digital environment is possible, and it would result in greater employment opportunities for people who are blind or have low vision.</p><img src="https://counter.theconversation.com/content/212600/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michele McDonnall receives funding from the National Institute on Disability, Independent Living, and Rehabilitation Research. Grant number 90RTEM0007 provided funding for the research discussed in this story. </span></em></p>Assistive technology like screen readers for the blind help people with disabilities use computers and smartphones, but they can be tripped up if webpages or documents are improperly formatted.Michele McDonnall, Research Professor of Rehabilitation Education and Research, Mississippi State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2193782023-12-18T13:23:43Z2023-12-18T13:23:43ZDo you hear what I see? How blindness changes how you process the sound of movement<figure><img src="https://images.theconversation.com/files/565875/original/file-20231214-23-s4v8j4.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2048%2C1462&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Sighted people would have a hard time crossing the street by sound alone.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/full-length-of-blind-woman-crossing-road-with-stick-royalty-free-image/1210268422">Maskot/DigitalVision via Getty Images</a></span></figcaption></figure><p>Almost nothing in the world is still. Toddlers dash across the living room. Cars zip across the street. Motion is one of the most <a href="https://doi.org/10.1088/0954-898X/6/3/003">important features in the environment</a>; the ability to predict the movement of objects in the world is often directly related to survival – whether it’s a gazelle detecting the slow creep of a lion or a driver merging across four lanes of traffic.</p>
<p>Motion is so important that the primate brain evolved a dedicated system for processing visual movement, known as the middle temporal cortex, <a href="https://doi.org/10.1016/B978-0-444-53860-4.00005-2">over 50 million years ago</a>. This region of the brain contains neurons specialized for detecting moving objects. These <a href="https://doi.org/10.1093/acrefore/9780190264086.013.76">motion detectors</a> compute the information needed to track objects as they continuously change their location over time, then sends signals about the moving world to other regions of the brain, such as those involved in planning muscle movements.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/565877/original/file-20231214-21-e83re8.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Diagram of brain with the middle temporal gyrus — a strip on the bottom side of the brain — highlighted in yellow" src="https://images.theconversation.com/files/565877/original/file-20231214-21-e83re8.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/565877/original/file-20231214-21-e83re8.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=347&fit=crop&dpr=1 600w, https://images.theconversation.com/files/565877/original/file-20231214-21-e83re8.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=347&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/565877/original/file-20231214-21-e83re8.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=347&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/565877/original/file-20231214-21-e83re8.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=436&fit=crop&dpr=1 754w, https://images.theconversation.com/files/565877/original/file-20231214-21-e83re8.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=436&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/565877/original/file-20231214-21-e83re8.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=436&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The middle temporal cortex is involved in processing visual movement.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File:Gray726_middle_temporal_gyrus.png">Gray, vectorized by Mysid, colored by was_a_bee/Wikimedia Commons</a></span>
</figcaption>
</figure>
<p>It’s easy to assume that you see and hear motion in a similar way. However, exactly how the brain processes auditory motion has been an <a href="https://doi.org/10.1016/j.brainres.2007.03.003">open scientific question</a> for at least 30 years. This debate centers on two ideas: One supports the existence of specialized auditory motion detectors similar to those found in visual motion, and the other suggests that people hear object motion as discrete snapshots.</p>
<p>As <a href="https://scholar.google.com/citations?user=WtPLYRIAAAAJ&hl=en">computational</a> <a href="https://scholar.google.com/citations?user=5LuGpVgAAAAJ&hl=en">neuroscientists</a>, we became curious when we noticed a blind woman confidently crossing a busy intersection. <a href="https://faculty.washington.edu/ionefine/">Our laboratory</a> has spent the past 20 years examining where auditory motion is represented in the brains of blind individuals.</p>
<p>For sighted people, crossing a busy street based on hearing alone is an impossible task, because their brains are used to <a href="https://doi.org/10.1364/JOSAA.20.001391">relying on vision</a> to understand where things are. As anyone who has tried to find a beeping cellphone that’s fallen behind the sofa knows, sighted people have a very limited ability to pinpoint the location or movement of objects based on auditory information.</p>
<p>Yet people who become blind are able to make sense of the moving world using only sound. How do people hear motion, and how is this changed by being blind?</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/565879/original/file-20231214-27-s4v8j4.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Aerial view of pedestrians on a crosswalk, a few cars waiting at the edges" src="https://images.theconversation.com/files/565879/original/file-20231214-27-s4v8j4.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/565879/original/file-20231214-27-s4v8j4.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/565879/original/file-20231214-27-s4v8j4.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/565879/original/file-20231214-27-s4v8j4.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/565879/original/file-20231214-27-s4v8j4.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=565&fit=crop&dpr=1 754w, https://images.theconversation.com/files/565879/original/file-20231214-27-s4v8j4.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=565&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/565879/original/file-20231214-27-s4v8j4.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=565&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">People who are blind are better able to track auditory motion in noisy conditions compared with sighted people.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/pedestrians-on-zebra-crossing-new-york-city-royalty-free-image/1048763642">Orbon Alija/E+ via Getty Images</a></span>
</figcaption>
</figure>
<h2>Crossing a busy street by sound alone</h2>
<p>In our <a href="https://doi.org/10.1073/pnas.2310156120">recently published study</a> in the journal PNAS, we tackled the question of how blind people hear motion by asking a slightly different version of it: Are blind people better at perceiving auditory motion? And if so, why?</p>
<p>To answer this question, we used a simple task where we asked study participants to judge the direction of a sound that moved left or right. This moving sound was embedded in bursts of stationary background noise resembling radio static that were randomly positioned in space and time.</p>
<p>Our first question was whether blind participants would be better at the task. We measured how loud the auditory motion had to be for participants to be able to perform the task correctly 65% of the time. We found that the hearing of blind participants was no different from that of sighted participants. However, the blind participants were able to determine the direction of the auditory motion at <a href="https://doi.org/10.1073/pnas.2310156120">much quieter levels</a> than sighted participants. In other words, people who became blind early in life are better at hearing the auditory motion of objects within a noisy world. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/565949/original/file-20231215-28-skziw1.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="showing motion of object from one corner of a plane to another, where the blind participant is able to detect the position of the object more closely than the sighted participant" src="https://images.theconversation.com/files/565949/original/file-20231215-28-skziw1.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/565949/original/file-20231215-28-skziw1.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=397&fit=crop&dpr=1 600w, https://images.theconversation.com/files/565949/original/file-20231215-28-skziw1.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=397&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/565949/original/file-20231215-28-skziw1.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=397&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/565949/original/file-20231215-28-skziw1.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=499&fit=crop&dpr=1 754w, https://images.theconversation.com/files/565949/original/file-20231215-28-skziw1.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=499&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/565949/original/file-20231215-28-skziw1.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=499&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Blind participants were able to determine the position of the object as it starts and stops moving more closely than sighted participants.</span>
<span class="attribution"><a class="source" href="https://doi.org/10.1073/pnas.2310156120">Ione Fine and Woon Ju Park</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span>
</figcaption>
</figure>
<p>We then examined how the noise bursts interfered with the ability to tell the direction of motion. For both sighted and blind participants, only the noise bursts at the beginning and the end of each trial had an effect on performance. These results show that people do not track objects continuously using sound: Instead they infer auditory motion from the <a href="https://doi.org/10.1073/pnas.2310156120">location of sounds at their beginning and end</a>, more consistent with the snapshot hypothesis. </p>
<p>Both blind and sighted people inferred movement from the start and stop of sounds. So why were blind people so much better at understanding auditory motion than sighted people? </p>
<p>Further analysis of the effects of background noise on the ability to track auditory motion showed that blind participants were affected only by noise bursts occurring at the <a href="https://doi.org/10.1073/pnas.2310156120">same locations in space and moments in time</a> as the onset and offset of the moving sound. This means that they were more sensitive to the beginning and end of the actual auditory motion and less susceptible to irrelevant noise bursts.</p>
<h2>When you hear what I see</h2>
<p>As any parent of a blind child will tell you, understanding motion is just <a href="https://nfb.org/our-community/parents-blind-children">one of the many ways</a> that blind children learn to interact with the world using different cues and actions. </p>
<p>A sighted baby recognizes their parent’s face as they approach the crib, while a blind baby recognizes the sound of their footsteps. A sighted toddler looks toward the dog to attract their parent’s attention, while a blind toddler might <a href="https://doi.org/10.1017/S0954579403000142">pull their parent’s hand</a> in the direction of the barking. </p>
<p>Understanding the ability of blind people to <a href="https://doi.org/10.1146/annurev-vision-102016-061241">learn how to successfully interact</a> with a world designed for the sighted provides a unique appreciation of the extraordinary flexibility of the human brain.</p><img src="https://counter.theconversation.com/content/219378/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>This work was supported by NIH National Eye Institute Grants R01EY014645 (to I.F.) </span></em></p><p class="fine-print"><em><span>Woon Ju Park receives funding from an NIH National Eye Institute Grant K99EY034546 and was supported by a Weill Neurohub Postdoctoral Fellowship. </span></em></p>Detecting and tracking motion is key to survival. The ability to extract auditory information from a noisy environment changes when your brain isn’t wired to rely on vision.Ione Fine, Professor of Psychology, University of WashingtonWoon Ju Park, Research Scientist, University of WashingtonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2123432023-12-07T19:19:00Z2023-12-07T19:19:00ZFriday essay: blind people are often exhausted by daily prejudice – but being blind is ‘inherently creative’<figure><img src="https://images.theconversation.com/files/562623/original/file-20231130-19-3d37qb.jpg?ixlib=rb-1.1.0&rect=10%2C40%2C6699%2C4396&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Thirdman/Pexels</span></span></figcaption></figure><p>Andrew Leland was in his thirties when he had to stop driving at night – and then stop driving at all. Next, he had to start using a cane in public. As the cycle of decreasing vision became familiar, each absent sliver of vision required more adjustment to how he navigated the world. </p>
<p>He moves through the same steps in the same sequence each time, but each loss is unique, and uniquely stressful. And he can still see the disdain of sighted people, which makes him long to lose all his vision at once:</p>
<blockquote>
<p>I thought about my periodic desire for the eye disease to just get it over with, and take the rest of my sight. I wanted to be relieved of seeing the way people look at blindness: the scorn, the condescension, the entitled, almost sexual leer. Skepticism, pity, revulsion, curiosity. I know I’ve looked at blind people this way too […] But I was a different person then: I didn’t really think of myself as blind.</p>
</blockquote>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/559008/original/file-20231113-15-y77vl9.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man with glasses and dark hair, smiling, wearing a polo shirt over a black t-shirt. Leafy branches in background." src="https://images.theconversation.com/files/559008/original/file-20231113-15-y77vl9.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/559008/original/file-20231113-15-y77vl9.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/559008/original/file-20231113-15-y77vl9.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/559008/original/file-20231113-15-y77vl9.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/559008/original/file-20231113-15-y77vl9.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/559008/original/file-20231113-15-y77vl9.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/559008/original/file-20231113-15-y77vl9.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Andrew Leland was in his thirties when he started to lose his vision.</span>
</figcaption>
</figure>
<h2>Blindness, creativity and memoir</h2>
<p>Responding to the idea that James Joyce’s blindness influenced his writing of <a href="https://theconversation.com/the-amateurs-age-of-unriddling-finnegans-wake-on-stage-38498">Finnegans Wake</a>, his biographer Richard Ellmann asserted: </p>
<blockquote>
<p>The theory that Joyce wrote his book for the ear because he could not see is not only an insult to the creative imagination, but an error of fact. Joyce could see; to be for periods half-blind is not at all the same thing as to be permanently blind.</p>
</blockquote>
<p>What Ellmann presents as a fact is actually a common myth. 85% of permanently blind people <a href="https://www.healthline.com/health/eye-health/why-do-blind-people-wear-sunglasses">have sight</a>. (I am one of the 15% of blind people who is totally blind, and the even smaller minority born this way.) And the line between blind and sighted is not straightforward. The results of a number of tests, and other factors, are taken into account.</p>
<p>Ellmann sounds like he is uncomfortable with thinking of Joyce as blind, and thinking of blind people as creative.</p>
<p>By contrast, during the writing of Finnegans Wake, Joyce himself was relaxed about the losses and gains of his situation. Responding to a letter from a friend on this topic, he wrote: “What the eyes bring is nothing. I have a hundred worlds to create, I am losing only one of them.”</p>
<hr>
<p><em>Review: The Country of the Blind: A Memoir at the End of Sight – Andrew Leland (Penguin Press), Life Unseen: A Story of Blindness – Selina Mills (Bloomsbury Academic)</em></p>
<hr>
<p>These tensions of identity and creativity between those who are sighted and those who are blind existed long before Joyce, and are still prevalent a century later. They are explored with candour and thoughtfulness in two recent memoirs, by <a href="https://www.bloomsbury.com/au/life-unseen-9781848856905/">Selina Mills</a> and <a href="https://www.penguin.com.au/books/the-country-of-the-blind-9781984881427">Leland</a>. </p>
<p>Like Joyce, their versions of blindness mean they have sight that gradually decreases over decades. And they are writers – both are journalists. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/558971/original/file-20231112-25-sorot6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/558971/original/file-20231112-25-sorot6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/558971/original/file-20231112-25-sorot6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/558971/original/file-20231112-25-sorot6.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/558971/original/file-20231112-25-sorot6.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/558971/original/file-20231112-25-sorot6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/558971/original/file-20231112-25-sorot6.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/558971/original/file-20231112-25-sorot6.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Blind writer Selina Mills explores the tensions of identity and creativity in her memoir.</span>
</figcaption>
</figure>
<p>While their memoirs are obviously written from personal vantage points, Mills and Leland detail much more than their own stories. Interwoven with their experiences of becoming blind are the experiences of blind writers, performers, teachers, activists, inventors and so on. </p>
<p>Mills, who is from the UK, researched blind women throughout European history. The few famous blind women she mentions are from outside Europe (which demonstrates the need for her research). One of them is American activist and author <a href="https://www.britannica.com/biography/Helen-Keller">Helen Keller</a> (1880-1968). Another is <a href="https://adb.anu.edu.au/biography/aston-matilda-ann-tilly-5078">Tilly Aston</a> (1873-1947), also known as “Australia’s blind poet.”</p>
<p>As Mills’ own sight decreased, she felt surrounded by sighted people’s stereotypes of blindness. She was compelled to research the real members of her community, for herself and her readers. As she writes:</p>
<blockquote>
<p>so much of our knowledge of blind people has relied on how sighted people have interpreted blindness. […] We fear it, we punish with it, we find it powerful and alluring all at the same moment and have done so for centuries. Principally, we rarely hear the voices of blind people themselves. Why not? Who were these blind people who lived and died, who were not just heroes or burdens of the sighted world?</p>
</blockquote>
<p>Similarly Leland, who lives in the US, concentrates on the recent and present US blind community in order to encourage both himself and his audience to develop a more nuanced understanding of what it means to be blind:</p>
<blockquote>
<p>I met people who said that their blindness meant nothing to them – that it was a mere attribute, like hair color – and others whose blindness utterly defined and upended their lives. […] I sympathized with all of these positions, even as I wondered which attitudes I would adopt for my own life. I tried to understand how blindness was changing my identity as a reader and a writer, as a husband and a father, as a citizen and an otherwise privileged white guy.</p>
</blockquote>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-amateurs-age-of-unriddling-finnegans-wake-on-stage-38498">The amateur’s age of unriddling: Finnegans Wake on stage</a>
</strong>
</em>
</p>
<hr>
<h2>What blind people have in common</h2>
<p>I was drawn to both books by their exploration of historical and philosophical questions. But as I read, Leland and Mills’ experiences of being blind with some sight also became compelling for how universal they are. </p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/558981/original/file-20231112-25-gkxftm.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/558981/original/file-20231112-25-gkxftm.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/558981/original/file-20231112-25-gkxftm.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=912&fit=crop&dpr=1 600w, https://images.theconversation.com/files/558981/original/file-20231112-25-gkxftm.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=912&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/558981/original/file-20231112-25-gkxftm.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=912&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/558981/original/file-20231112-25-gkxftm.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1146&fit=crop&dpr=1 754w, https://images.theconversation.com/files/558981/original/file-20231112-25-gkxftm.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1146&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/558981/original/file-20231112-25-gkxftm.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1146&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"></span>
</figcaption>
</figure>
<p>I have talked with many people losing sight as they transition to blindness, and am well aware of the shape of the sight-loss journey. Yet these books emphasised to me the significant number of experiences blind people have in common, regardless of how much sight we have, or where we live, or when we were born.</p>
<p>Mills and Leland have both been losing sight for two decades now. But they began at different levels of sight and the cause was different for each of them. </p>
<p>Leland’s sight loss began as night blindness when he was a teenager. His research on the early internet suggested the cause was <a href="https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/retinitis-pigmentosa#:%7E:text=Retinitis%20pigmentosa%20(RP)%20is%20a,that%20people%20are%20born%20with.">retinitis pigmentosa</a> (RP), a degenerative condition where night blindness is followed by peripheral vision loss, then central vision loss, sometimes ending in total blindness. After his first year of college, he went to an eye clinic where his self-diagnosis was confirmed. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/happy-birthday-braille-how-writing-you-can-touch-is-still-helping-blind-people-to-read-and-learn-89550">Happy birthday, Braille: how writing you can touch is still helping blind people to read and learn</a>
</strong>
</em>
</p>
<hr>
<p>Leland’s interest in understanding blindness as an identity develops another dimension when he learns his retinitis pigmentosa is part of his Ashkenazi Jewish heritage. He discovers that throughout history, blind people and Jewish people were often denigrated in similar ways. </p>
<p>Medieval literature and disability studies researcher Edward Wheatley points out, for example, that both groups were branded as greedy, lazy, and dishonest. And both groups were said to be responsible for their marginalisation by Christian society – Jewish people for refusing to convert, and blind people for sinfulness.</p>
<p>Significantly, both blind people and Jewish people were early and constant victims of the Nazis. And the threat multiplied if you belonged to both groups. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/disabled-people-were-holocaust-victims-too-they-were-excluded-from-german-society-and-murdered-by-nazi-programs-198298">Disabled people were Holocaust victims, too: they were excluded from German society and murdered by Nazi programs</a>
</strong>
</em>
</p>
<hr>
<h2>The borderlands between blind and sighted</h2>
<p>Mills’ sight began to decrease in her early thirties. However, she was already accustomed to living in the borderlands between blind and sighted: she was born with no sight in one eye. </p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/558980/original/file-20231112-21-psr9xn.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/558980/original/file-20231112-21-psr9xn.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/558980/original/file-20231112-21-psr9xn.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=900&fit=crop&dpr=1 600w, https://images.theconversation.com/files/558980/original/file-20231112-21-psr9xn.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=900&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/558980/original/file-20231112-21-psr9xn.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=900&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/558980/original/file-20231112-21-psr9xn.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1131&fit=crop&dpr=1 754w, https://images.theconversation.com/files/558980/original/file-20231112-21-psr9xn.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1131&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/558980/original/file-20231112-21-psr9xn.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1131&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"></span>
</figcaption>
</figure>
<p>Growing up, she attended mainstream schools. Her childhood, though, had many experiences in common with other blind children. Teachers incorrectly assumed that she had learning difficulties when she was six and she got a prosthetic eye when she was ten. She was left to drift rather than being supported throughout her schooling and she finished school without having been taught braille or how to use a cane.</p>
<p>Having only spent time with sighted people, she was used to thinking of herself as similar to them, even though she was often exhausted and they were not. </p>
<p>In her twenties, she became a journalist and travelled throughout Europe. She only sometimes carried a cane, just as a precaution. Mills was in her early thirties when bus numbers and step edges became difficult to see. This prompted her to go to an ophthalmologist, who discovered she had an inoperable cataract.</p>
<h2>Other people’s prejudice</h2>
<p>Mills and Leland have to manage a range of emotions that accompany losing sight, as well as the reactions of their families and friends. But the most difficult aspect of being blind, they discover, is other people’s prejudice. </p>
<p>Echoing the experiences of the blind people whose lives they explore, they are exhausted by the frequency and variety of prejudice they have to manage in their daily lives. </p>
<p>Sometimes it is overt: being denied education or work, being told to not have sex or have children, being refused entry to a venue if not accompanied by a sighted person. Sometimes it is questions disguised as concern – about whether you can cook, or how you are sure you have performed a work task properly, or whether you actually need to learn braille. </p>
<p>It always contains the message that being sighted is superior to being blind, and blind people should feel envious of sighted people and ashamed of who we are.</p>
<p>I suspect it was this prejudice Joyce was reacting to when he said, “What the eyes bring is nothing.” I don’t think he meant he had no use at all for the tiny amount of sight he had. I think he was exasperated by so many people continuing to insist it must be more difficult for him to write as a blind person. Certainly, he felt sight was not a prerequisite for creativity and that blindness had enhanced his writing.</p>
<p>This prejudice even extends to sighted people believing they have the knowledge to distinguish between blind and sighted strangers within seconds of seeing them. And they believe they are entitled to call out anyone they are convinced is faking it. </p>
<p>This happens to Mills at a train ticket barrier when the guard asks her for her ticket, then for her disabled person’s travel card. Like most blind people, she keeps the card in a specific place in her wallet, ready for these occasions. But the guard associates blindness with slowness and incompetence, so takes her organisation as evidence she is faking blindness:</p>
<blockquote>
<p>“How did you get that then?” “Get what?” “Your disability travel card? – I mean, you can see all right, can’t you?” Having learnt to be patient with other non-believers, I was calm. “Oh, I know, but I have only got about 20 per cent vision on a good day. The doctors tested me.” Unconvinced, the guard continued: “You think you can get your card, and just get away with it. I saw you walking down the platform, bright and breezy. You are faking it!” He was quite proud of his little diatribe and seemed unkeen to let me through unless I confessed to my high crimes and misdemeanours.</p>
</blockquote>
<p>Fortunately she has an irrefutable piece of evidence – her prosthetic eye, which she removes and presents to the guard: </p>
<blockquote>
<p>“ The queue gasped. I was shaking with fury. You really think I had my real eye plucked out and went through the pain of having a false eye made, just to get a discount on my f*king train ticket?</p>
</blockquote>
<p>Blind people are harassed in this way regardless of our level of sight. As a totally blind person, I have many similar anecdotes. However, these experiences can have a particularly devastating effect on someone adjusting to blindness. </p>
<p>Both Mills and Leland discuss how incidents like this make them reluctant to use a cane. "Sometimes I left the cane behind, just to have a day off from the reactions, but the falling over and bashing into lampposts is not always worth it,” writes Mills. “The more I need to use my cane to find curbs and doorways, the more patronizing and intrusive (and sometimes hostile) strangers become,” echoes Leland.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/henry-lawson-and-judith-wright-were-deaf-but-theyre-rarely-acknowledged-as-disabled-writers-why-does-that-matter-208365">Henry Lawson and Judith Wright were deaf – but they’re rarely acknowledged as disabled writers. Why does that matter?</a>
</strong>
</em>
</p>
<hr>
<h2>Blind women from history</h2>
<p>Connecting with other blind people helps both Leland and Mills not just accept, but value their blindness. The blind people they encounter show them how to minimise the effect of sighted prejudice on their identity, and to understand that being blind is inherently creative.</p>
<p>Mills connects with blind women from history who deserve to be better known. And it is thrilling to learn about them with her, and to know that details of their lives are finally more publicly accessible. </p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/558972/original/file-20231112-27-sorot6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A painting of Saint Odile, bowing in a gold robe, among greenery" src="https://images.theconversation.com/files/558972/original/file-20231112-27-sorot6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/558972/original/file-20231112-27-sorot6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=800&fit=crop&dpr=1 600w, https://images.theconversation.com/files/558972/original/file-20231112-27-sorot6.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=800&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/558972/original/file-20231112-27-sorot6.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=800&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/558972/original/file-20231112-27-sorot6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1005&fit=crop&dpr=1 754w, https://images.theconversation.com/files/558972/original/file-20231112-27-sorot6.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1005&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/558972/original/file-20231112-27-sorot6.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1005&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Saint Odile of Alsace, a blind woman, founded two monasteries.</span>
<span class="attribution"><a class="source" href="https://en.wikipedia.org/wiki/Odile_of_Alsace#/media/File:Alsace_Mont_Sainte-Odile_24.JPG">Wikipedia</a></span>
</figcaption>
</figure>
<p>They include <a href="https://en.wikipedia.org/wiki/Odile_of_Alsace">Saint Odile of Alsace</a> (an area now occupied by France and Germany), born in 660 AD, who travelled throughout Europe and founded two monasteries. <a href="https://en.wikipedia.org/wiki/Th%C3%A9r%C3%A8se-Ad%C3%A8le_Husson">Therese-Adele Husson</a>, born in 1803, was a French writer of children’s books and romantic fiction. And <a href="https://en.wikipedia.org/wiki/Maria_Theresia_von_Paradis">Maria Theresia von Paradis</a>, born in 1759 in Austria, was a talented pianist from a young age. </p>
<p>As an adult, Maria Theresia’s life was divided between being subjected to one horrific so-called cure after another and performing throughout Europe. She was friends with Haydn, as well as Mozart – who composed a piano concerto for her. She was a composer herself, of more than five operas and more than 30 sonatas, and in Vienna she established one of the first schools for blind musicians. </p>
<p>As Mills points out, “unlike Mozart and Haydn and a few other known women composers, who died penniless or unpublished, she had what few musicians had in the age – a successful profession and an income.”</p>
<h2>Developing a blind identity</h2>
<p>Leland feels connected to a number of 20th-century blind writers, such as James Joyce, and to many current blind writers, as well as advocates, engineers and artists.</p>
<p>Many blind people devoted years of their lives to argue for the rights of all disabled people to have equal access to public spaces, education, employment and more. </p>
<p>Meanwhile, so much technology in everyday use over the last century has been created or enhanced by blind people, from long-play records to internet chat forums. And every step of the way, many blind people generously shared their knowledge to help others who were still developing their skills. </p>
<p>One of the people who shared their knowledge with Leland was American activist and teacher Barbara Loos. Leland met Loos at a blindness convention. She encouraged him to attend the residential training course that later accelerates Leland’s cane skills and confidence. </p>
<p>She then pinpoints the problems with how he’d been taught to read braille. This sets him on the path to reestablishing and reinvigorating his identity as a reader by learning to read braille correctly and obtaining a braille display – a device that connects to a computer and displays the screen one line at a time.</p>
<blockquote>
<p>once I’d finished my last course, I brought it [the braille display] out again, and fell in love. Reading on the braille display was a palliative against my anxiety about going blind. The more facility I gained with it, the more I could imagine a rich life for myself as a blind reader.</p>
</blockquote>
<p>Reading these books, and the lives and work they explore, I feel extremely proud of my community.</p><img src="https://counter.theconversation.com/content/212343/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Amanda Tink does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Two new memoirs make blind writer Amanda Tink ‘very proud’ of her community – and share the stories of blind writers, performers, teachers, activists and inventors.Amanda Tink, Adjunct Research Fellow, Western Sydney UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2173322023-11-10T16:34:37Z2023-11-10T16:34:37ZAll the Light We Cannot See: how progressive congenital cataracts can lead to blindness<p>In the new Netflix series <a href="https://www.imdb.com/title/tt15320362/">All the Light We Cannot See</a>, a blind French girl called Marie-Laure LeBlanc makes illicit radio broadcasts from her uncle’s house in Nazi-occupied France. We are told that Marie-Laure has congenital cataracts in both eyes. But what is this condition?</p>
<p>The word “cataract” comes from the Latin word for waterfall and describes a condition where the usually transparent lens of the eye is cloudy or opaque. This prevents a clear image being projected onto the back of the eye and causes poor vision. </p>
<p>Many people will have heard of cataracts in the context of older adults because the lens becomes cloudier throughout life, slowly causing blurry vision. Surgery to remove the cloudy lens and replace it with a clear plastic one is commonplace and quite routine nowadays. In fact, cataract surgery in adults is one of the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7812090/">most common operations</a> performed in healthcare systems across the world.</p>
<p>However, around three in 10,000 children are <a href="https://www.moorfields.nhs.uk/content/childrens-cataracts#:%7E:text=In%20the%20UK%203%20in,Cataracts%20may%20not%20require%20treatment.">born with cataracts</a> (congenital cataracts) and this poses a much more urgent problem. During very early childhood, the brain learns to see and so anything causing poor vision must be dealt with rapidly to allow the brain time to adjust. </p>
<p>In modern healthcare systems, most babies with cataracts have surgery before the age of ten weeks to avoid very poor lifelong vision. Some children are born with milder cataracts and then they progress (become cloudier), as we can assume was the case for the fictional character Marie-Laure. Nowadays, these children are watched closely because their cataracts can <a href="https://www.rnib.org.uk/your-eyes/eye-conditions-az/congenital-cataracts/">progress slowly, or very quickly</a>, depending on their cause.</p>
<p>Surgery is offered when the potential benefits outweigh the risks. Marie-Laure’s story is quite different. In the 1940s, surgery was far riskier and a far cry from modern micro-surgery under general anaesthetic. Most children had no treatment at all.</p>
<figure class="align-center ">
<img alt="An intraocular lens." src="https://images.theconversation.com/files/558675/original/file-20231109-29-pvi0kl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/558675/original/file-20231109-29-pvi0kl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/558675/original/file-20231109-29-pvi0kl.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/558675/original/file-20231109-29-pvi0kl.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/558675/original/file-20231109-29-pvi0kl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/558675/original/file-20231109-29-pvi0kl.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/558675/original/file-20231109-29-pvi0kl.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">In cataract surgery, the cloudy lens is replaced.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/iol-intraocular-lens-cataract-ophthalmology-2057263202">Simpotich Photography/Shutterstock</a></span>
</figcaption>
</figure>
<h2>Treatment is very different today</h2>
<p>In most developed healthcare systems in 2023, newborns are examined routinely after birth and one part of this is to look for eye problems, including cataract. This was not the case in the 1940s, and so how Marie-Laure’s cataracts developed and at what age, is probably unclear. This is important, because there are many different underlying causes of congenital cataract, including conditions affecting just the eyes, conditions affecting other parts of the body such as <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6975004/#:%7E:text=Nance%E2%80%93Horan%20syndrome%20(NHS),%2C%20congenital%20cataract%2C%20and%20strabismus.">Nance-Horan syndrome</a>, and even life-limiting metabolic diseases. </p>
<p>Nowadays, when a cataract is found in newborns or children, doctors seek these conditions using genetic testing and other blood tests.</p>
<p>Importantly, congenital cataracts which do get worse in childhood (as is the story for Marie-Laure) are more likely to be due to conditions that affect other parts of the body, and so it is possible that Marie-Laure also had other medical problems related to an underlying condition.</p>
<p>One critic <a href="https://www.stylist.co.uk/entertainment/tv/all-the-light-we-cannot-see-netflix/568157">praised</a> All the Light We Cannot See for being “a significant leap forward for disability inclusion, rights and representation on screen and beyond”. Marie-Laure’s teenage character is played by <a href="https://www.imdb.com/name/nm13200978/">Aria Mia Loberti</a>, an American actor who has a congenital eye condition called <a href="https://www.moorfields.nhs.uk/condition/achromatopsia">achromatopsia</a>. And the young Marie-Laure is played by <a href="https://www.imdb.com/name/nm15346843/">Nell Sutton</a>, who has another rare condition called <a href="https://www.moorfields.nhs.uk/content/childrens-glaucoma">congenital glaucoma</a>. </p>
<p>Achromatopsia causes low vision, moving eyes and no colour vision at all, and congenital glaucoma causes the pressure inside the eye to be very high and when untreated, causes loss of vision and the eyeball to enlarge way beyond its normal size. In the 1940s little would have been known about any of these conditions or indeed, how to treat them.</p>
<p>Medical treatment, surgery and support have changed vastly since the 1940s, but the challenges faced by young people living with low vision, despite the cause, are still very real.</p><img src="https://counter.theconversation.com/content/217332/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jay E. Self does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Cataracts aren’t just something people develop in older age. Some people are born with them.Jay E. Self, Associate Professor and Consultant Ophthalmologist, University of SouthamptonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2005262023-05-12T12:19:21Z2023-05-12T12:19:21ZGene therapy helps combat some forms of blindness – and ongoing clinical trials are looking to extend these treatments to other diseases<figure><img src="https://images.theconversation.com/files/517754/original/file-20230327-14-rcucem.jpg?ixlib=rb-1.1.0&rect=24%2C18%2C997%2C490&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">New gene therapies are helping to treat certain forms of inherited blindness.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/view-of-a-blind-man-assisted-by-a-friend-as-he-walks-on-a-news-photo/1299277661?phrase=blind%20person%20walking&adppopup=true">GettyImages</a></span></figcaption></figure><p><em><a href="https://www.orbis.org/en/news/2021/new-global-blindness-data#">An estimated 295 million people</a> suffer from visual impairment globally. Around 43 million of those people are living with blindness. While not every form of blindness can be cured, <a href="https://pubmed.ncbi.nlm.nih.gov/33278565/">recent scientific breakthroughs</a> have uncovered new ways to treat some forms of inherited blindness through gene therapy.</em></p>
<p><em><a href="https://www.med.upenn.edu/apps/faculty/index.php/g275/p11214">Jean Bennett</a> is a gene therapy expert and a professor emeritus of ophthalmology at the University of Pennsylvania. She and her laboratory developed the first gene therapy drug for a genetic disease to be approved in the U.S. The drug, <a href="https://luxturna.com/">Luxturna</a>, treats patients with biallelic RPE65 mutation-associated retinal dystrophy, a rare genetic disorder that causes visual impairments and blindness in patients early in life.</em></p>
<p><em>In March, Bennett spoke at the 2023 <a href="https://www.imaginesolutionsconference.com/">Imagine Solutions Conference</a> in Naples, Florida, about what gene therapy is, why it matters and the success she and her team have had helping the blind to see. The Conversation caught up with Bennett after the conference. Her edited answers are below.</em></p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/-kwpzvrJHms?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Jean Bennett speaks at the 2023 Imagine Solutions Conference.</span></figcaption>
</figure>
<h2>What is gene therapy and how does it work?</h2>
<p><a href="https://www.fda.gov/vaccines-blood-biologics/cellular-gene-therapy-products/what-gene-therapy">Gene therapy</a> is a set of techniques that harness <a href="https://medlineplus.gov/genetics/understanding/basics/dna/">DNA</a> or <a href="https://www.umassmed.edu/rti/biology/what-is-rna/">RNA</a> to treat or prevent disease. Gene therapy treats disease in <a href="https://www.childrenshospital.org/treatments/gene-therapy#">three primary ways</a>: by substituting a disease-causing gene with a healthy new or modified copy of that gene; turning genes on or off; and injecting a new or modified gene into the body.</p>
<h2>How has gene therapy changed how doctors treat genetic eye diseases and blindness?</h2>
<p>In the past, many doctors did not think it necessary to identify the genetic basis of eye disease because treatment was not yet available. However, a few specialists, including <a href="https://www.med.upenn.edu/carot/">me and my collaborators</a>, identified these defects in our research, convinced that someday treatment would be made possible. Over time, we were able to create a treatment designed for individuals with particular gene defects that lead to congenital blindness.</p>
<p>This development of gene therapy for inherited disease has <a href="https://www.eye-tuebingen.de/wissingerlab/projects/rd-cure/">inspired</a> <a href="https://atsenatx.com/">other</a> <a href="https://www.medicalnewstoday.com/articles/gene-therapy-for-macular-degeneration">groups</a> around the world to initiate clinical trials targeting other genetic forms of blindness, such as <a href="https://medlineplus.gov/genetics/condition/choroideremia/">choroideremia</a>, <a href="https://medlineplus.gov/genetics/condition/achromatopsia/">achromatopsia</a>, <a href="https://medlineplus.gov/genetics/condition/retinitis-pigmentosa/">retinitis pigmentosa</a> and even <a href="https://www.hopkinsmedicine.org/health/conditions-and-diseases/agerelated-macular-degeneration-amd">age-related macular degeneration</a>, all of which lead to vision loss. There are at least <a href="https://www.clinicaltrials.gov/">40 clinical trials</a> enrolling patients with other genetic forms of blinding disease. </p>
<p>Gene therapy treatments are now available in pharmacies and operating rooms all over the world. </p>
<p>Gene therapy is even being used to restore vision to people whose photoreceptors – the cells in the retina that respond to light – have completely degenerated. This approach uses <a href="https://pubmed.ncbi.nlm.nih.gov/36499371/">optogenetic therapy</a>, which aims to revive those degenerated photoreceptors by adding light-sensing molecules to cells, thereby drastically improving a person’s vision.</p>
<h2>You created one of the first gene therapies approved in the US. What is the current state of the clinical use of gene therapy?</h2>
<p>There are now many approved gene therapies in the U.S., but the majority are combined with cell therapies in which a cell is modified in a dish and then injected back into the patient. </p>
<figure class="align-left ">
<img alt="Woman in lab coat, face mask, goggles and gloves squeezes syringe into petri dish" src="https://images.theconversation.com/files/512977/original/file-20230301-1750-ujq9ka.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/512977/original/file-20230301-1750-ujq9ka.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/512977/original/file-20230301-1750-ujq9ka.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/512977/original/file-20230301-1750-ujq9ka.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/512977/original/file-20230301-1750-ujq9ka.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/512977/original/file-20230301-1750-ujq9ka.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/512977/original/file-20230301-1750-ujq9ka.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Many forms of gene therapy are helping to treat blindness.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/asian-female-doctor-is-working-in-laboratory-royalty-free-image/1363580438?phrase=laboratory%20technician&adppopup=true">GettyImages</a></span>
</figcaption>
</figure>
<p>The majority of those therapies target different forms of cancer, although there are several for devastating inherited diseases. The drug <a href="https://www.fda.gov/vaccines-blood-biologics/skysona">Skysona</a> is a new injectable gene therapy medication that treats boys ages 4 to 17 with <a href="https://www.childrenshospital.org/conditions/adrenoleukodystrophy-ald">cerebral adrenoleukodystrophy</a>, a genetic disease in which a buildup of very-long-chain fatty acids in the brain can lead to death.</p>
<p>The gene therapy that my team and I developed was the first FDA-approved project involving injection of a gene therapy directly into a person – in this case, into the retina. Only one other <a href="https://www.fda.gov/vaccines-blood-biologics/zolgensma">FDA-approved gene therapy</a> is directly administered to the body – one that targets <a href="https://www.hopkinsmedicine.org/health/conditions-and-diseases/spinal-muscular-atrophy-sma#">spinal muscular atrophy</a>, a disease that causes progressive muscle weakness and eventually death. The drug, Zolgensma, is injected intravenously into babies and children diagnosed with the disease, allowing them to live as healthy, active children. </p>
<p>There are now more than two dozen FDA-approved cell and gene therapies, including <a href="https://theconversation.com/anti-cancer-car-t-therapy-reengineers-t-cells-to-kill-tumors-and-researchers-are-expanding-the-limited-types-of-cancer-it-can-target-196471">CAR T-cell therapies</a> – in which T cells, a type of immune system cells, are modified in the laboratory to better attack cancer cells in the body – and therapies for various blood diseases.</p>
<h2>What are you currently working on that you’re most excited about?</h2>
<p>I am very excited about some <a href="https://clinicaltrials.gov/ct2/show/NCT05616793?cond=LCA5&draw=2&rank=1">upcoming clinical trials</a> that my team will soon initiate to target some other devastating blinding diseases. We will incorporate a new test of functional vision – how your eyes, brain and the visual pathways between them work together to help a person move in the world. This test utilizes a virtual reality game that is not only fun for the user but promises to provide an objective measure of the person’s functional vision. I hope that our virtual reality test will inform us of any potential benefits from the treatments and also serve as a useful outcome measure for other gene and cell therapy clinical trials involving vision.</p>
<h2>What are the biggest challenges gene therapy faces?</h2>
<p>The biggest challenges involve systemic diseases, or diseases affecting the entire body rather than a single organ or body part. For those diseases, super-high doses of gene therapy reagents must be delivered. Such diseases involve not only technical challenges – such as how to manufacture enormous amounts of gene therapy compounds without contaminating them – but also difficulties ensuring that the treatment targets diseased tissues without causing toxic immune side effects. That level of a problem does not exist with the eye, where relatively small doses are used and exposure to the rest of the body is limited.</p>
<p>Another challenge is how to address diseases in which the target gene is very large. Current approaches to delivering treatments into cells lack the capacity to hold large genes.</p>
<p>Cost remains a key issue in this effort – gene therapy drugs are <a href="https://www.nytimes.com/2017/09/11/health/cost-gene-therapy-drugs.html">enormously expensive</a>. As drug manufacturers are able to refine this technique, gene therapy drugs may become more commonplace, causing their price to drop as a result.</p><img src="https://counter.theconversation.com/content/200526/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jean Bennett was a founder of GenSight Biologics and Opus Genetics and was a scientific (non-equity holding) founder of Spark Therapeutics. She and her husband waived any potential financial gain from Luxturna in 2002 so that they could conduct the clinical trials. Her team received funds from the Children's Hospital of Philadelphia, Foundation Fighting Blindness and Spark Therapeutics to run those trials. She is a co-author on a number of gene therapy patents, including one on LCA5 gene therapy that was licensed to Opus Genetics. She also is a co-author of intellectual property relating to use of virtual reality for vision assessment. She also serves on Scientific Advisory Boards for several groups and serves on Boards of two companies (Opus Genetics and REGENXBIO) and a private Foundations (RDFund).</span></em></p>Genetics expert Jean Bennett explains how gene therapy is being used to treat certain forms of inherited blindness.Jean Bennett, Professor Emeritus of Ophthalmology; Cell and Developmental Biology, University of PennsylvaniaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1982982023-01-26T19:06:11Z2023-01-26T19:06:11ZDisabled people were Holocaust victims, too: they were excluded from German society and murdered by Nazi programs<figure><img src="https://images.theconversation.com/files/506003/original/file-20230124-13-xzjg5i.jpg?ixlib=rb-1.1.0&rect=113%2C2%2C1681%2C1096&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Five handicapped Jewish prisoners, photographed for propaganda purposes, who arrived in Buchenwald after Kristallnacht.</span> <span class="attribution"><span class="source">Holocaust Memorial Museum/Photograph #13132</span></span></figcaption></figure><p>When Dominic Perrottet admitted to wearing a Nazi uniform to his 21st birthday party, he <a href="https://www.abc.net.au/news/2023-01-12/dominic-perrottet-apologises-for-wearing-nazi-costume-to-21st/101849280">apologised</a> to Jews and veterans – but not to the other groups who were persecuted by the Nazis, including disabled people. </p>
<p>However, disabled people were the first victims of the Holocaust. They were murdered in a number of Nazi programs specifically targeting them, as well as those that targeted Jews, <a href="https://en.wikipedia.org/wiki/Sinti">Sinti</a>, and <a href="https://www.britannica.com/topic/Rom">Roma</a>. </p>
<p>In 2023, International Holocaust Remembrance Day marks 90 years since the Nazis assumed power, and immediately began their persecution of everyone they thought of as “inferior”.</p>
<p>The Nazis frequently described disabled people as “useless eaters”, “empty human shells”, and “life unworthy of life”. They chose these labels to evoke images of people who were incapable of doing anything, and so needed to be kept in institutions for their entire lives, wasting the tax dollars of non-disabled people. </p>
<p>A suite of policies implemented by the Nazis forced disabled people out of German society and into institutions, where they worked until they were murdered.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/uvrwnJ6hQ9s?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Disabled people were the first victims of the Holocaust.</span></figcaption>
</figure>
<h2>Most disabled people lived in the community</h2>
<p>In early 20th-century Germany, most disabled people lived in the community. In the mid-1920s, a national government survey of disabled people (the only one conducted during that era) found that few disabled people lived in institutions permanently. In fact, only a minority of disabled people lived in institutions at all – and this was often for education or rehabilitation, when they were young. </p>
<p>For example, though 17.5% of blind people lived in “schools for the blind”, the majority (80.4%) of blind people were adults living in the community. And a third of those disabled people with the highest rates of institutionalisation – the psychologically or intellectually impaired – lived in the community.</p>
<p>A network of organisations managed by and for disabled people prioritised gaining and maintaining employment. Some, such as the German Association of Blind Academics, established in 1916, focused on a particular profession. Others, such as the Self-help League of the Physically Handicapped, established in 1919, created training and jobs for its members. In 1929, it had a membership of 6,000 throughout Germany, and was a role model for a similar organisation in Austria.</p>
<p>This trajectory of increasing self-determination and community involvement of disabled people ended when the Nazis came to power in 1933. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/three-charts-on-disability-discrimination-in-the-workplace-85183">Three charts on: disability discrimination in the workplace</a>
</strong>
</em>
</p>
<hr>
<h2>Exclusion and government hate campaigns</h2>
<p>One of the first legislative changes that affected all disabled people, as it did all Jews, was their exclusion from the new <a href="https://encyclopedia.ushmm.org/content/en/article/women-in-the-third-reich">marriage loans program</a>, which lent money to each newly married couple, and forgave a quarter of the loan for each child they had. </p>
<p>Given Germany’s economic instability and high rates of unemployment, this financial assistance was significant – but only marriages “in the interest of the national community” were eligible. Both Jewish and disabled people were also ineligible later that year, when farms were made available to people who would not otherwise have an inheritance.</p>
<p>These laws were accompanied by a relentless government hate campaign. In schools, libraries, and waiting rooms, there was a succession of posters, pamphlets, and magazines, reminding “Aryans” of their superiority, and of the undesirability of everyone else. </p>
<p>Tours through institutions where disabled people were forced into scenes of helplessness became commonplace. These tours were mandatory for anyone who was planning to marry, in order to dissuade the couple from proceeding if there was any chance their child might be “unfit”.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/506047/original/file-20230124-17-adihpe.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Images of physically disabled children, with a caption that reads 'deformed'." src="https://images.theconversation.com/files/506047/original/file-20230124-17-adihpe.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/506047/original/file-20230124-17-adihpe.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=404&fit=crop&dpr=1 600w, https://images.theconversation.com/files/506047/original/file-20230124-17-adihpe.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=404&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/506047/original/file-20230124-17-adihpe.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=404&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/506047/original/file-20230124-17-adihpe.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=507&fit=crop&dpr=1 754w, https://images.theconversation.com/files/506047/original/file-20230124-17-adihpe.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=507&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/506047/original/file-20230124-17-adihpe.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=507&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Nazi propaganda slide featuring two images of physically disabled children. The caption reads ‘deformed’.</span>
<span class="attribution"><span class="source">United States Holocaust Memorial Museum, courtesy of Marion Davy</span></span>
</figcaption>
</figure>
<p>In this atmosphere, the <a href="https://encyclopedia.ushmm.org/content/en/timeline-event/holocaust/1933-1938/law-for-the-prevention-of-offspring-with-hereditary-diseases">Law for the Prevention of Offspring with Hereditary Diseases</a>, which made the sterilisation of disabled people compulsory, encountered little opposition when it was enacted on 14 July 1933. </p>
<p>When it officially took effect, on 1 January 1934, movies and travelling exhibitions were added to the hate campaign. These stifled any remaining opposition, and made it impossible for the victims of this law to maintain any privacy about their personal circumstances. </p>
<p>Those who objected to their sterilisation were labelled unpatriotic. Those who did not object to their sterilisation were labelled inferior. And either way, women who were sterilised were then targeted for rape. Foreshadowing the Nazis’ increasing incarceration of disabled people, the only way to avoid sterilisation was to commit oneself to an institution.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/506014/original/file-20230124-22-d1d8p8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Four disabled men, dressed in black." src="https://images.theconversation.com/files/506014/original/file-20230124-22-d1d8p8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/506014/original/file-20230124-22-d1d8p8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=403&fit=crop&dpr=1 600w, https://images.theconversation.com/files/506014/original/file-20230124-22-d1d8p8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=403&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/506014/original/file-20230124-22-d1d8p8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=403&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/506014/original/file-20230124-22-d1d8p8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=506&fit=crop&dpr=1 754w, https://images.theconversation.com/files/506014/original/file-20230124-22-d1d8p8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=506&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/506014/original/file-20230124-22-d1d8p8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=506&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Nazi propaganda, showing four disabled men. The original caption reads: ‘Hereditary illnesses are a heavy burden for the people and the state’.</span>
<span class="attribution"><span class="source">United States Holocaust Memorial Museum, courtesy of G Howard Tellier</span></span>
</figcaption>
</figure>
<p>It became increasingly dangerous for disabled people to be seen in public, let alone to work. To force them into institutions, it was now only necessary for the Nazis to target the few remaining avenues they had for remaining in the community – marriage and education. </p>
<p>In 1935, one month after sexual contact and marriage was prohibited between “Aryans” and Jews, it was also prohibited between “Aryans” and disabled people. In the same year, disabled people were not permitted to attend school past elementary level. And within two years, they were not permitted to attend school at all unless it was part of an institution.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/people-with-disabilities-in-group-homes-are-suffering-shocking-abuse-new-housing-models-could-prevent-harm-197989">People with disabilities in group homes are suffering shocking abuse. New housing models could prevent harm</a>
</strong>
</em>
</p>
<hr>
<h2>Aktion T4 and the murder of disabled people</h2>
<p>The <a href="https://encyclopedia.ushmm.org/content/en/article/euthanasia-program">Aktion T4</a> program targeted disabled adults in Germany and Austria, murdering them in gas chambers attached to institutions. Though it is the most well-known of the programs that specifically targeted disabled people, it was not the first, and not the only one.</p>
<p>The murder of disabled children began on July 25 1939, and was soon part of the procedure of designated hospitals throughout Germany and Austria. In September, the Nazis began murdering the patients in the asylums of the countries they occupied, beginning with Poland. </p>
<p>The first victims of Aktion T4 were murdered in October – the program had a quota of 70,000 victims. When this quota was reached, most of Aktion T4’s staff were assigned to establish the “final solution”, and the euthanasia of disabled people was transferred to hospitals.</p>
<p>Disabled people were victims of every other Nazi extermination program, too. Whether they had found a way to remain in the community, or became impaired due to Nazi violence or the work they were forced to do, many disabled people were incarcerated in concentration camps and ghettos. 3,200 blind people were deported from <a href="https://encyclopedia.ushmm.org/content/en/article/theresienstadt">Theresienstadt</a> alone.</p>
<p>These events are important to remember – not only as history, but as an example of how short the path from exclusion to murder can be.</p><img src="https://counter.theconversation.com/content/198298/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Amanda Tink does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>In 2023, International Holocaust Remembrance Day marks 90 years since the Nazis assumed power. Disabled people were the first Holocaust victims; Nazi programs discriminated against and murdered them.Amanda Tink, PhD Candidate, Western Sydney UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1916982022-10-10T13:20:06Z2022-10-10T13:20:06ZThe magic of touch: how deafblind people taught us to ‘see’ the world differently during COVID<figure><img src="https://images.theconversation.com/files/488856/original/file-20221009-58320-oy1rpz.jpg?ixlib=rb-1.1.0&rect=16%2C139%2C5447%2C3276&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/silhouette-hand-behind-glass-foreground-276478628">Toeizuza Thailand/Shutterstock</a></span></figcaption></figure><blockquote>
<p>As someone who is severely deaf and completely blind, I felt overnight I had lost a third sense, my sense of touch. To make matters worse, people around me faded away – voices had become so quiet that there was an eerie soundlessness all around. Nothing was making sense any more.</p>
</blockquote>
<p>Issy McGrath has <a href="https://medlineplus.gov/genetics/condition/usher-syndrome/#:%7E:text=Usher%20syndrome%20type%20II%20is,to%20hear%20high%2Dfrequency%20sounds.">type 2 Usher syndrome</a>. Completely blind and severely deaf, she has a passion for music and plays the flute. Using a combination of touch, smell and keen imagination – her “inner eye” – Issy says she frequently senses things that are beyond the grasp of sight: the “almost solid” nature of the winter air in the morning, or the enchanting atmosphere of a frozen landscape.</p>
<hr>
<iframe id="noa-web-audio-player" style="border: none" src="https://embed-player.newsoveraudio.com/v4?key=x84olp&id=https://theconversation.com/the-magic-of-touch-how-deafblind-people-taught-us-to-see-the-world-differently-during-covid-191698&bgColor=F5F5F5&color=D8352A&playColor=D8352A" width="100%" height="110px"></iframe>
<p><em>You can listen to more articles from The Conversation, narrated by Noa, <a href="https://theconversation.com/us/topics/audio-narrated-99682">here</a>.</em></p>
<hr>
<p>For Issy and many others like her, the COVID pandemic had a devastating effect on day-to-day life. “Two-metre social distancing felt like the world had turned its back on me,” she recalls. “It was too far for me to reach out and touch everything around me. Yet it’s mainly through touch that I get a sense of what a person is like.”</p>
<p>A retired teacher living in Glasgow, Scotland, Issy speaks poignantly about her COVID struggles in an <a href="https://touch-post-covid.gla.ac.uk/index.php/example-data/">audio diary</a> that was part of my <a href="https://touch-post-covid.gla.ac.uk/">research</a> into the experiences of deafblind people during the pandemic:</p>
<blockquote>
<p>As I approach my garden gate, feeling around for the latch to open it, a thought occurs to me. There is a pandemic sweeping the world and maybe I will catch the virus from this wooden fence. Maybe it’s on the latch I have just touched. I shake my hands to free myself from these thoughts. I make my way back to my house and wash my hands thoroughly, trying to free my mind of these fearful imaginings.</p>
</blockquote>
<h2>‘You can feel the energy of things’</h2>
<p>As a filmmaker, I am constantly questioning how and what we see – and what we <em>don’t</em> see. This has led me to work closely with deafblind communities around the UK, to understand how their view of the world differs from everyone else’s – in an ocularcentric society that privileges vision over all other senses.</p>
<p>Perceiving through touch takes time. By methodically stroking different surfaces, deafblind people build up a mental image not only of a person or object, but their place in the surrounding room or landscape. Deafblind people’s hands and skin are, I think, unusually sensitive to different levels of rigidity, to the feeling of different textures, and to slight differences in movement or temperature.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/488854/original/file-20221009-45436-nyr7ga.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/488854/original/file-20221009-45436-nyr7ga.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/488854/original/file-20221009-45436-nyr7ga.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/488854/original/file-20221009-45436-nyr7ga.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/488854/original/file-20221009-45436-nyr7ga.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/488854/original/file-20221009-45436-nyr7ga.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/488854/original/file-20221009-45436-nyr7ga.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">John Whitfield, a key member of the research project: ‘You are desperate to get information but it’s very tiring.’</span>
<span class="attribution"><span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>John Whitfield, a training officer at <a href="https://dbscotland.org.uk/what-we-do/">Deafblind Scotland</a>, has been severely deaf since birth and now has only 5% of his vision left. He describes how much concentration is required to understand the world around him and keep up with conversations. “Sometimes that is very, very tiring,” he admits.</p>
<blockquote>
<p>Because you are so conscious of the restriction on your hearing and vision, your brain has to compensate – and your body is having to compensate too by getting information in whatever way it can. My sense of smell is heightened, for example. You are just desperate to get as much information from the environment as you possibly can, so you will use any method.</p>
</blockquote>
<p>For Roger Wilson-Hindr, who lives with his vision-impaired wife in a small village in the Midlands of England, touching means more than just receiving sensory input or holding on to information. He says every tactile interaction is a chance to form a new relationship, adding that “touch and physical contact take on greater significance if your eyes and ears are badly damaged like mine”.</p>
<p>Corneal scars and glaucoma suffered during childhood limit what Roger can perceive – he is able to see colour but with little definition. Trees, one of his favourite things, appear as a golden or green mass.</p>
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<p><strong><em>This story is part of Conversation Insights</em></strong>
<br><em>The Insights team generates <a href="https://theconversation.com/uk/topics/insights-series-71218">long-form journalism</a> and is working with academics from different backgrounds who have been engaged in projects to tackle societal and scientific challenges.</em></p>
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<p>But when gardening, he can still “feel” the seasons through the bendability, texture and direction of the stems and branches. He says there is a “magic” to touch – “you can feel the energy of things” – and that it’s not always just about making up for a lack of vision. Deafblind people’s tactile world contains much joy.</p>
<p>Imagine, then, the impact for Roger and all other blind and deafblind people when COVID transformed the meaning of touch and proximity to others – from a life-enricher to a potential life threat. As Issy puts it:</p>
<blockquote>
<p>Social distancing meant the world both passed me by and left me constantly conflicted. Do I allow people into my space so that I can interact and make sense of the world, risking catching the virus? Or do I ask people to respect the two-metre social distance rule, and allow a creeping sense of isolation to overwhelm my emotional wellbeing?</p>
</blockquote>
<h2>The importance of touch</h2>
<p>There are two common misconceptions about deafblind people: that they require continuous assistance and are not easy to communicate with. During our research, we heard how these perceptions contribute to their exclusion from wider society and can have a damaging effect on their confidence. This was all made worse by the pandemic, as Issy explains:</p>
<blockquote>
<p>Holding someone’s hand provides me with so much information – to feel the fabric of someone’s clothing means I can get a real sense of their being. Suddenly [with the onset of COVID], to be so far away from the scent of their perfume or the texture of their hair … it was all gone. Even with the relaxing of social-distancing, the joy I had in reaching out to touch and link arms with other people has become subdued and cautious, as I warily navigate my world through my sense of touch.</p>
</blockquote>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/rzKyw7cTdao?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Issy McGrath talks about her struggles during the pandemic. Film by Azadeh Emadi.</span></figcaption>
</figure>
<p>When we think about touch, we usually think of hands and fingertips. But Roger highlights that, for deafblind people, “touch uses all aspects of our body – from the top of our head to feel the sunlight, to our feet for feeling where we are on the street”. Indeed, all of our interviewees emphasised the importance of touching with their feet – helping them to scan and perceive the environment while walking, to recognise the characteristics of different spaces and create a mental map.</p>
<p>As the first lockdown was easing, Issy recalls being reduced to tears in the middle of a street in her suddenly unfamiliar Glasgow neighbourhood. With cafés and restaurants expanding outside and altering the usual pedestrian layout, she found herself continually bumping into unexpected obstacles and people. As well as the frustration of having to create a new internal map of the area, she worried that people might become annoyed because of her lack of social distancing.</p>
<p>At the same time, she also felt a new threat from people invading her personal space:</p>
<blockquote>
<p>I remember standing outside a supermarket, waiting for my husband, when someone tapped me abruptly on my shoulder and asked where the nearest car park was. Realising he had touched me was a shock and made me feel so uncomfortable. I asked if he was socially distancing and he replied that he had been trying to attract my attention for ages. Until that moment I was totally unaware he was there.</p>
</blockquote>
<h2>Conversations with a quantum physicist</h2>
<p>Before the pandemic took a grip of the world, much of my research was focused on pixels. In particular, how these tiny areas of illumination join forces to create an uninterrupted experience of film without ever revealing themselves – each undergoing a different rate of change depending on the codes they receive.</p>
<p>This led to some fascinating conversations with a quantum physicist, Daniele Faccio from my university’s physics department, about how new technology might reveal hitherto imperceptible light phenomena. His team were using <a href="https://www.nature.com/articles/s41566-020-0697-7">single-photon cameras</a> that can detect light waves as particles and thus “freeze” light in motion, taking photographs of a light pulse or video of light as it moves through a room.</p>
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Read more:
<a href="https://theconversation.com/disabled-people-are-already-cutting-back-on-costs-more-than-others-for-many-the-150-cost-of-living-payment-wont-do-much-to-help-191022">Disabled people are already cutting back on costs more than others – for many, the £150 cost of living payment won't do much to help</a>
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<p>As a videomaker, I found this technology fascinating – and I wondered if we could pool our knowledge to help blind people “watch” moving images by translating them into a tactile experience. In other words, develop a platform that could work as a form of “video Braille”. </p>
<p>In 2019, we began experimenting with ultrasound technology to focus soundwaves and create pressure spots that could be felt on someone’s hands. In this way, we hoped we could turn pixels from moving images into a range of tactile experiences linked to a film’s content (e.g. facial expressions, emotions, movement). The tactile sensations could include different temperatures, pressures and movements on the palm of each hand.</p>
<p>Then the pandemic intervened, our project was put on hold, and time slowed to a frustrating crawl. A saving grace, though, was my growing understanding of the way deafblind people take such care to understand their surroundings, never rushing the process of learning about a new situation. This helped me to slowly accept and learn from this extraordinary period, rather than trying to escape it.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/r8zBgoM_i0Y?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Film of Issy McGrath in her kitchen by Azadeh Emadi.</span></figcaption>
</figure>
<p>Once lockdown ended, I tried to convey this by filming <a href="https://touch-post-covid.gla.ac.uk/index.php/touchscreen/#purple">Issy in her kitchen</a> as she made a cup of tea and arranged a vase of purple flowers. What to sighted viewers might look like “fumbling and stumbling” (as Issy calls it) is actually her way of learning and knowing. We see her gently touching the flowers, smelling their scent, imagining their forms as she measures their length, cuts and carefully arranges them into a vase. She is taking as much time as her touch needs:</p>
<blockquote>
<p>Although the way I move around might look to you like a struggle, it’s not. I am putting my hand out to reach and touch things, pick things up, make sense of what’s in front of me, because that is the way I interact with my world. I am drawing up a map in my mind of what’s out there. So instead of thinking I am struggling, let me fumble and stumble – that is all information for me. The reward I get is that I will be, and am, a much more autonomous and resilient deafblind person.</p>
</blockquote>
<h2>A tool to help deafblind people</h2>
<p>The insights offered by Issy and our other deafblind collaborators during the early days of COVID made us determined to <a href="https://www.mdpi.com/1424-8220/22/19/7136">develop a tool</a> that could help give them some independence in navigating the newly opened-up spaces after lockdown. This shifted our attention from developing a video Braille tool to one that could accurately locate the people and objects around them. </p>
<p>The synergy we’d already found between arts and quantum physics resulted in our idea for a new “spatial awareness” tool. Over a series of workshops starting in June 2021, Issy and John helped our research team to understand how deafblind people imagine, memorise and map a space both with and without touch – and thus what they needed from our device.</p>
<p>The prototype consisted of two elements: a portable radar and wearable feedback devices (a headband and an armband). “I am going to be honest and say I felt like the borg from Star Wars,” recalls Issy, our first tester. “But wow, it was fascinating.”</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/488857/original/file-20221009-57478-mwbb1c.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Deafblind man pointing out man in front of him" src="https://images.theconversation.com/files/488857/original/file-20221009-57478-mwbb1c.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/488857/original/file-20221009-57478-mwbb1c.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=382&fit=crop&dpr=1 600w, https://images.theconversation.com/files/488857/original/file-20221009-57478-mwbb1c.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=382&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/488857/original/file-20221009-57478-mwbb1c.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=382&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/488857/original/file-20221009-57478-mwbb1c.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=480&fit=crop&dpr=1 754w, https://images.theconversation.com/files/488857/original/file-20221009-57478-mwbb1c.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=480&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/488857/original/file-20221009-57478-mwbb1c.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=480&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">John Whitfield tests the prototype device to help deafblind people sense others around them.</span>
<span class="attribution"><span class="license">Author provided</span></span>
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</figure>
<p>The radar would scan the space up to six metres in front and to each side of the tester, tracking people as they came into range and moved about. This information was turned into vibrations of different intensity using tiny <a href="https://www.nfpmotor.com/products-coin-vibration-motors.html">coin vibration motors</a> in the headband and armband, which activated depending on the distance and direction of the detected person.</p>
<p>In our first test in a large theatre room at the University of Glasgow, Issy – having turned off her hearing aids to avoid getting any other environmental clues – was asked to indicate the direction of a person entering the near-space in front of her based on the vibrations she felt in the headband.</p>
<p>Most of the time, without hesitation, she correctly indicated where they were standing. It was an emotional moment for her, and all of us, when we told her about the accuracy of her answers. For the first time since she went completely blind, she was sensing where people were without relying on touch:</p>
<blockquote>
<p>Goodness, it would be so nice to walk up the road with this technology. Along with Yang my guide dog, I’d have a device that can tell me much more about the space around me and what’s happening – you know, how many people are in front of me, to the side, where are they? Am I walking right into a big crowd?</p>
</blockquote>
<p>In our second test, Issy used both the headband (to indicate the person’s direction) and armband (for their proximity) – but struggled to correctly detect how far away a person was. After a few trials, we realised the coin vibrations motors were too close together for her to differentiate the signals, and that the forearm location was also confusing. It would be better to combine the two sets of information (distance and direction) into one headband, and use the intensity of vibrations to indicate how far away the person was.</p>
<p>After further trials, we <a href="https://www.mdpi.com/1424-8220/22/19/7136">refined the tool</a> enough to be implemented into a cap. From the outset, our participants had stressed the importance of creating wearable technology that could blend in with everyday clothing if it was to be of true benefit to users such as Issy:</p>
<blockquote>
<p>The fact that it could give me an extra sense of my surroundings is fascinating. I actually just wanted to say to the guys: ‘Do you fancy going up Great Western Road with it now?’</p>
</blockquote>
<h2>‘A magic that reveals the joy in the world’</h2>
<p>In May 2022, I was giving Issy a tour of our <a href="https://www.cca-glasgow.com/whats-on/collection/touchscreen-rethinking-perception-through-sight-and-skin">TouchScreen event</a> at the Centre for Contemporary Arts in Glasgow. She was immediately drawn to a video installation called <a href="https://www.wolfgangweileder.com/other/trees_video_installation.html">Trees, by Wolfgang Weileder</a>. The video shows trees in different locations being cut down.</p>
<p>While standing in front of the large screen, she said she could sense the trees in the video via her cane. The sound frequencies from the audio were travelling from the speakers through the ground – she was thrilled because she felt included in the experience of the artwork.</p>
<p>As we stood there, I shifted my attention from seeing to feeling with my feet – and I could sense the vibrations too. This new layer of experience had been imperceptible to me a moment ago, yet now I felt physically related to the trees as they were being cut down. I also became aware of the ground connecting me with Issy. The sound was touching us both.</p>
<figure>
<iframe src="https://player.vimeo.com/video/340255071" width="500" height="281" frameborder="0" webkitallowfullscreen="" mozallowfullscreen="" allowfullscreen=""></iframe>
<figcaption><span class="caption">Trees by Wolfgang Weileder.</span></figcaption>
</figure>
<p>Favouring vision over other senses means we risk missing out on a host of rich experiences and connections – not least with people like Issy, Roger, John and other differently-abled people.</p>
<p>So the ambition of our <a href="https://touch-post-covid.gla.ac.uk/">ongoing research</a> – combining deeper understanding of the needs of deafblind people with cutting-edge quantum technology – is not only to enable deafblind people to play a bigger role in society. We also want to use their unique understanding of the world to enrich everyone else’s.</p>
<p>There could be more research into technology that enables them to communicate more independently. For example, by looking at how mmWaves (the type of radio waves used in airport security scanners) could be used to recognise hand gestures and touch-based communication beyond sign-language. </p>
<p>Certainly, there is more for us all to learn about the value of touch in the aftermath of the pandemic. If our eyesight is about knowing through a safe distance, touch is about forming intimate relations and becoming entangled with the surrounding world. As Issy says:</p>
<blockquote>
<p>You know, as somebody who has lost their eyesight, I was just too busy trying to get on with things. You don’t stop for two minutes and think: ‘Well actually, I hadn’t thought … how much I rely on touch and how much it means to me. How much it helps me to visualise the world.’</p>
</blockquote>
<p>For John, touch is a “holistic way of feeling” through the body. For Issy it is about “imagination” and knowing through “fumbling and stumbling”. For Roger, touch is like “magic” that reveals the joy in the world.</p>
<p>It is sad that it has taken a pandemic to bring greater understanding of the significance of touch – and in particular, touch deprivation – in our daily lives. But perhaps the disconnectedness we all experienced has also evoked greater empathy for the struggles deafblind people have been experiencing throughout history, such as isolation, lack of effective communication and exclusion from society.</p>
<p>It’s time we embraced their unique insights and learn about the way they “see” and feel the world. Or as Issy puts it:</p>
<blockquote>
<p>I always say to people, ‘You come into my space for two minutes and I’ll show you the way, in my world and my deafblind culture. The way I interact and connect with my space. Walk with me and I’ll show you the way – not through your eyes … but by connecting with me and my hands through touch.</p>
</blockquote>
<p><em>This article is part of an Insights series developed with <a href="https://www.ukri.org/about-us/">UK Research and Innovation</a> (UKRI) to explore the wider implications of research carried out during the COVID pandemic. <a href="https://touch-post-covid.gla.ac.uk/">Touch Post-COVID-19</a> is a UKRI-funded <a href="https://touch-post-covid.gla.ac.uk/index.php/team/">interdisciplinary research project</a> based at the University of Glasgow.</em></p>
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<p class="fine-print"><em><span>Azadeh Emadi does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A cultural collaboration with deafblind people led to the development of a high-tech device to help navigate their world post-lockdownAzadeh Emadi, Lecturer in Screen Production, School of Culture & Creative Arts, University of GlasgowLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1671552021-09-23T10:00:51Z2021-09-23T10:00:51ZDiabetes targets would cost more but the impact would be worth it: here’s how<figure><img src="https://images.theconversation.com/files/421845/original/file-20210917-15-1alo6s0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Early detection of diabetes is important in setting treatment targets </span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/nov-14-2019-a-doctor-makes-free-blood-sugar-test-on-world-news-photo/1182443866?adppopup=true">Xinhua/Mohamed Khidir via Getty Images</a></span></figcaption></figure><p>Setting global health targets, which is often done by multinational organisations, such as the United Nations or World Health Organisation (WHO), is commonly used to improve health outcomes. For example, the United Nations <a href="https://www.avert.org/global-hiv-targets">target</a> to improve access to treatment for HIV has resulted in many more people receiving the treatment that they need, which has <a href="https://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2020/july/20200706_global-aids-report">saved</a> lives. </p>
<p>Now, the WHO <a href="https://www.thelancet.com/journals/landia/article/PIIS2213-8587(21)00111-X/fulltext">Diabetes Compact</a> to support people living with diabetes is under development. The content of the Compact will not be finalised until 2022. However, to help inform whether targets should be part of the Compact, we asked what the health benefits from achieving various targets for people with diabetes would be, and whether these could be cost-effective over the next 10 years. </p>
<p>The WHO is considering whether targets should be set, and our <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(21)00340-5/fulltext">analysis</a> feeds into that process as there was little previous evidence to inform what the targets should be. We were involved in some of the WHO processes for the Compact, and our results have been shared with WHO, but the analysis we did was independent. Similar to the UN targets for HIV/AIDS, the targets we considered were the percentages of people with diabetes and its associated cardiovascular disease risk factors (for example high blood pressure and choesterol) who were diagnosed, treated and controlled.</p>
<p>Our study was based on data from 23,678 people with diabetes living in 67 low- or middle-income countries. These countries were chosen as they had data available and they are home to <a href="http://www.healthdata.org/gbd/data">80% of the world’s people</a> with diabetes. </p>
<p>We found that setting targets for 80% of people with diabetes to have the condition (and other risk factors) diagnosed, treated, and controlled would substantially reduce death and improve healthy-years lived. And it would also be highly cost effective. </p>
<h2>Diabetes is often overlooked</h2>
<p>The most common form of diabetes, type 2 diabetes, is often associated with obesity and usually starts in later life. It is seldom noticed unless picked up by a medical professional. Over time it causes complications such as cardiovascular diseases (like heart attacks and strokes), kidney disease and blindness. These complications are far more likely to happen if a person with diabetes also has high blood pressure (hypertension), another condition that often goes unnoticed. </p>
<p>Treating diabetes and raised blood pressure markedly reduces the risk of future complications. Whether or not cholesterol is raised, giving a medication called a statin to lower it also <a href="https://journals.plos.org/plosmedicine/peerReview?id=10.1371/journal.pmed.1003485.r005">reduces</a> risk. These treatments to reduce risk in people with diabetes are also <a href="https://www.who.int/nmh/publications/essential_ncd_interventions_lr_settings.pdf">recommended</a> by the WHO. </p>
<p>However, our research has <a href="https://www.thelancet.com/journals/lanhl/article/PIIS2666-7568(21)00089-1/fulltext">previously shown</a> that fewer than 6% of people with diabetes get all the treatment they need to reduce risk of future complications.</p>
<h2>Three targets</h2>
<p>We therefore asked two questions. How would achieving certain targets reduce future complications from diabetes? And, in looking at costs relative to the health benefits, could achieving these targets be cost effective?</p>
<p>Reducing complications from diabetes requires interventions to reduce elevated blood sugar, blood pressure and cholesterol. We asked what benefits would be seen, and at what cost, for all three of these interventions combined.</p>
<p>We studied combinations of three targets. The first is that patients with diabetes are actually diagnosed, and their high blood pressure, if present, is also diagnosed. Second, that they are on treatment for blood sugar, blood pressure and cholesterol using a statin medication. And third, that their blood sugar and blood pressure are controlled to below internationally recommended levels. We tested these at targets of 60%, 70%, or 80% for each of diagnosis, treatment, or control. In other words, what would happen if 80% of people with diabetes and high blood pressure were diagnosed, 80% of those patients were treated and 80% of them were controlled.</p>
<p>We compared this to a baseline scenario in which diagnosis, treatment and control continued at current levels. </p>
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Read more:
<a href="https://theconversation.com/how-changing-blood-pressure-targets-in-south-africa-could-save-costs-and-lives-153674">How changing blood pressure targets in South Africa could save costs and lives</a>
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<p>We found that achieving each of these targets dramatically reduced deaths and improved the number of years people could live in good health. The number of years that people can live in good health is captured by a measure called <a href="https://www.who.int/data/gho/indicator-metadata-registry/imr-details/158">Disability Adjusted Life Years or DALYs</a>. One DALY is equivalent to the loss of a year in full health, hence it captures both early death and being unwell due to a disease.</p>
<p>We found that the greatest impact of achieving the targets would be from reducing the risk of cardiovascular diseases. Other risks like blindness and kidney diseases would be less affected by achieving the targets. </p>
<p>In addition, most of the benefits came from improving treatment of high blood pressure and giving a statin for cholesterol, rather than from treating or controlling high blood sugar.</p>
<p>Overall, at the highest target of 80% diagnosis, 80% treatment, and 80% control, we found that healthy-years-lived were improved by around 6%. This means that around 6% more people with diabetes would be expected to live healthier lives. Even achieving the lower targets of 60% resulted in substantial improvements. </p>
<p>We also showed that achieving the 80% targets would greatly reduce deaths, especially those from cardiovascular diseases.</p>
<p>There was substantial variation in benefits by world regions. For example, reduction in deaths due to cardiovascular diseases was greatest in east sub-Saharan Africa. In this region, deaths would fall from around 46 per 1,000 people in the baseline scenario to 27 per 1,000 with a target of 80% for diagnosis, treatment, and control. In central Latin America deaths fell from around 18 per 1,000 people at baseline to 14 per 1,000 with this target.</p>
<h2>Achieving targets is cost effective</h2>
<p>In our <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(21)00340-5/fulltext">study</a>, we considered the costs of diagnosing and treating diabetes and hypertension, and giving a statin, and the costs of treating the complications of diabetes, for the baseline scenario (current diagnosis, treatment, and control levels continued for the next 10 years) and each of the targets. </p>
<p>In the baseline scenario, the costs of managing diabetes in the countries in the study would be $2,222,882 per 1,000 people with diabetes over the next 10 years. </p>
<p>If diagnosis, treatment, and control were scaled up to achieve 80% targets for each, the costs would increase by a small amount, to $2,832,000 per 1,000 people with diabetes. Most of the increased costs would come from achieving the target for increasing treatment of hypertension. But the costs of treating cardiovascular disease complications would fall. </p>
<p>Overall this gave an incremental cost-effectiveness ratio (effectively the costs per extra healthy-life-year lived, or DALY averted) of $1,362. These costs are well below the WHO <a href="https://www.valueinhealthjournal.com/article/S1098-3015(15)00574-4/fulltext#relatedArticles">thresholds</a> for cost effectiveness of three times GDP per capita for each country. So, each extra year of healthy life would cost $1,362, but the WHO has a benchmark of three times GDP per capita as a worthwhile investment in a year of healthy life. For example, GDP per capita in Angola is $2,790, therefore an intervention would be considered cost effective (by WHO) if it cost less than $8,370 per DALY.</p>
<p>We have shown that targets for diabetes would improve healthy lives and reduce deaths, and that they would be cost effective. But these targets should not be for managing the blood sugar element of diabetes alone; they must include treating hypertension and giving statins to patients with diabetes. </p>
<p><em>This study was done by multiple co-investigators, and this article is written on behalf of the co-investigator team.</em></p><img src="https://counter.theconversation.com/content/167155/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Justine Ina Davies receives funding from the UK National Institute for Health Research, the UK Medical Research Council, and the US National Institute of Health. </span></em></p><p class="fine-print"><em><span>David Flood receives funding from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). He also serves as an unpaid Staff Physician for Maya Health Alliance and GlucoSalud, which are two non-governmental health organizations in Guatemala; in his role with these organizations, he occasionally carries out diabetes advocacy and solitics funding for clinical diabetes programs.</span></em></p><p class="fine-print"><em><span>Sanjay Basu receives funding from the US Centers for Disease Control and Prevention, the Clinton Global Health Access Initiative, and the US National Institutes of Health.</span></em></p><p class="fine-print"><em><span>Jennifer Manne-Goehler does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Targets for diabetes would improve healthy lives, reduce deaths, and be cost effective. But they should not be for managing diabetes alone; they must include treating hypertension.Justine Ina Davies, Professor of Global Health, Institute for Applied Research, University of BirminghamDavid Flood, Research Fellow, University of MichiganJennifer Manne-Goehler, Research Fellow in Medicine, Harvard UniversitySanjay Basu, Director of Research, Center for Primary Care, Harvard UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1641412021-07-08T14:32:15Z2021-07-08T14:32:15ZSteve Kekana: an 80s South African pop star, and much more<figure><img src="https://images.theconversation.com/files/410286/original/file-20210708-15-8y7z4m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Steve Kekana in 2020 in Johannesburg, South Africa. </span> <span class="attribution"><span class="source">Photo by Oupa Bopape/Gallo Images via Getty Images</span></span></figcaption></figure><p><em><a href="https://www.sowetanlive.co.za/entertainment/2021-07-05-disability-and-unjust-laws-failed-to-deter-kekana/">Steve Kekana</a> was one of South Africa’s most popular singers in the 1980s era of soul and disco. But he was many other things besides – he was a law teacher, talk radio host and a man who overcame apartheid and disability to thrive. Yonela Mnana is a singer, pianist and music teacher who is currently working on his PhD on South African piano. The Conversation Africa asked him for his impressions of the artist whose songs he teaches and whose paths crossed his several times.</em></p>
<h2>Who was Steve Kekana and what does he represent?</h2>
<p>Steve Kekana was a popular and award-winning singer and songwriter, who became blind at the age of five. He was born in the Zebediela district of Limpopo province in the north of South Africa, in 1958, not far from Polokwane, the capital of the province. He went to <a href="https://siloeschool.co.za/">Siloe School for the Blind</a> at Chuenespoort, Polokwane, the same school that I went to. Belgian missionaries were part of the teaching faculty.</p>
<p>He never finished school because he was expelled for championing student rights. So that’s one of the things he represents, human rights, in more ways than one. And we know his passion for labour law and that he ended up being a university lecturer.</p>
<p>And his singing. This came later – around 1979, when his first album came out. Also, he became much better known after he’d moved to Johannesburg.</p>
<p>His life intersected with mine because we attended the same school. I first met him when the school had its 50th anniversary. I was in the final years of my schooling and I had already started playing keyboards. I did music in extramural class. We used to do his songs in his absence. And one day he came through. He struck me as quite an independent person.</p>
<p>I think he didn’t like hero worship, it made him feel awkward and slightly antisocial. Later I would see that he didn’t really feel chuffed about people telling him how much they thought of his music. He was known as a very honest person.</p>
<h2>Tell us why he was so special musically</h2>
<p>In the popular music environment, his music represented everything. At first, as a singer and songwriter, he was just doing songs with commentary on social norms and issues. One of his songs speaks about this guy who always wears great outfits, tailor-made suits, but he doesn’t even have blankets to sleep on. </p>
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<p>He was as flexible as he could be in the music ethos of the time. As early as 1981, 1982 he began scooping up awards for huge hits like <em>Iphupho</em> (in isiZulu), <em>Mandla</em> (isiZulu) and <em>Abuti Thabiso</em> (Sesotho).</p>
<p>Most of the guys at the time were able to harmonise by themselves, but when it comes to his singing, we must appreciate fellow blind singer and musician <a href="https://www.sowetanlive.co.za/entertainment/2021-07-02-long-time-friend-mlangeni-pays-glowing-tribute-to-kekana/">Babsy Mlangeni</a>’s mentorship as well. In 1979 Babsy was already 11 years into the industry when he started working with Kekana.</p>
<p>I find that Kekana’s singing always mutated, as much as his songs did. </p>
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<p>He also moved quite a lot in terms of record labels. By 1983 he already had a label, Steve Records, which I assume was his own, that released his music. He reminds me of Frank Sinatra in this way. I think the idea of constantly reinventing himself was appealing to him. He was stealing and borrowing from all genres. The Americans do it nowadays, but Steve was doing it years ago. </p>
<p><em>Take Your Love</em> was ahead of its time, as were his collaborations with a white artist during apartheid, <a href="https://pjpowers.co.za/">PJ Powers</a>.</p>
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<h2>How popular was he?</h2>
<p>Steve’s popularity led to <a href="https://www.michigansthumb.com/news/article/Stampedes-at-Events-Over-the-Years-7361437.php">a stampede in Lesotho</a> in 1980. In fact his song <a href="https://www.youtube.com/watch?v=nkh1HI3iLNY"><em>Kodua Ea Maseru</em></a> was about what happened. </p>
<p>Hip hop musicians trying to fill up a venue are always acting like they’re the first ones to do it in South Africa. He did it in Lesotho in an age when there was no Twitter and no marketing. Of course, then people actually went to see music more. Nowadays we see it more as a product than an experience.</p>
<p>Steve worked with a couple of bands – <a href="https://www.joburg.org.za/play_/Pages/Play%20in%20Joburg/Joburg%20Vibe/links/Why%20I%20love%20Joburg/links/Sipho-Hotstix-Mabuse.aspx">Hotstix Mabuse</a> was one of the producers. Steve, with his blind trio – Babsy Mlangeni, himself and Koloi Lebona – had garnered a lot of popularity in schools. And not only did they represent themselves, they also advocated for disability and especially blindness in a very real way. And they did it with such panache.</p>
<p>I was lucky enough to be invited to his house to help him with piano, you know, show him some scales. I think he made quite a comfortable living, really, and again I admired his independence.</p>
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<p>In 2010 I was invited to a workshop with other blind musicians and Steve, Babsy and Koloi were there and I think they kind of believed that if music worked for them as blind people, who were disenfranchised, it probably should be able to work for everybody else. But it’s sad to look at people from just one dimension. He was many things.</p>
<h2>How should we remember him?</h2>
<p>I think maybe that’s how we could remember him: he was just another ordinary human being who did extraordinary things. In the way that all other great people do in this world.</p><img src="https://counter.theconversation.com/content/164141/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Yonela Mnana receives funding from Arts Research in Africa and First Rand Trust Bursary.</span></em></p>We should remember him as just another ordinary human being who did extraordinary things.Yonela Mnana, PhD candidate in Music, University of the WitwatersrandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1607162021-06-06T09:00:03Z2021-06-06T09:00:03ZHow The Gambia beat trachoma, an infection that causes blindness<figure><img src="https://images.theconversation.com/files/402320/original/file-20210524-21-1tzhvoe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A health worker examines a child for signs of trachoma </span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/an-african-ministry-of-health-worker-with-opthamology-news-photo/72546415?adppopup=true">Joe McNally/Getty Images </a></span></figcaption></figure><p>The government of <a href="https://www.britannica.com/place/The-Gambia">The Gambia</a> recently <a href="https://www.iapb.org/news/the-gambia-eliminates-trachoma-as-a-public-health-problem/">announced</a> that the country had eliminated trachoma, a highly contagious eye disease, after years of hard work by health workers, nongovernmental organisations (NGOs) and communities. </p>
<p>In The Gambia, the disease <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1041660/">accounted</a> for 17% of the reported blindness in a national survey in 1986. The prevalence of trachoma has dropped from <a href="https://pubmed.ncbi.nlm.nih.gov/9828780/">0.1% to 0.02%</a> in the last 10 years. Current <a href="https://www.iapb.org/news/the-gambia-eliminates-trachoma-as-a-public-health-problem/">estimates</a> show a prevalence of less than 0.2% in adults aged over 15 years. This is about one case per 1,000 people.</p>
<p>Trachoma has been <a href="https://academic.oup.com/bmb/article/84/1/99/382442">described</a> as the most infectious cause of blindness in the world, <a href="https://www.who.int/news-room/fact-sheets/detail/trachoma">responsible for 1.4%</a> of blindness. It is <a href="https://idpjournal.biomedcentral.com/articles/10.1186/s40249-020-0630-9">one</a> of the 20 neglected tropical diseases that plague over a billion of the world’s poorest people. </p>
<p>As at <a href="https://www.who.int/news-room/fact-sheets/detail/trachoma">September 2020</a>, 13 countries had reported that they had eliminated it as a disease of public health concern. Others in Africa were Ghana and Morocco. Togo is <a href="https://endinafrica.org/news/its-time-to-take-togo-off-the-who-trachoma-list/">pending</a> validation from the World Health Organisation. The organisation has <a href="https://www.who.int/news-room/fact-sheets/detail/trachoma">validated</a> the claims of 10 of the 13 countries. </p>
<p>The WHO lists <a href="https://www.who.int/trachoma/resources/who_htm_ntd_2016.8/en/#:%7E:text=In%202012%2C%20Oman%20became%20the,as%20a%20%E2%80%9Cverification%E2%80%9D%20exercise.&text=The%20process%20for%20diseases%20targeted,been%20defined%20as%20%E2%80%9Cvalidation%E2%80%9D">strict guidelines</a> to determine whether trachoma has in fact been eliminated from endemic countries. One is that there must be a system in place to identify and, where necessary, manage any new cases in line with protocols. This means that once a country is confirmed as having eliminated trachoma, a resurgence is not expected. </p>
<p>As we are involved in the ongoing <a href="https://espen.afro.who.int/system/files/content/resources/NIGERIA_NTD_Master_Plan_2015_2020.pdf">Nigerian effort</a> to curb trachoma, my colleagues and I are studying countries like The Gambia closely for guidance.</p>
<p>Sario Kanyi, the coordinator of The Gambia’s trachoma elimination initiative, <a href="https://ehp.niehs.nih.gov/doi/10.1289/EHP2699">said</a> its success started in the community. He added that once people knew what trachoma was, they took charge and helped in communicating what had to be done.</p>
<h2>What is trachoma?</h2>
<p>Trachoma is an infection caused by the bacteria <em>Chlamydia trachomatis</em>. It can be spread through physical contact with the eyes, nose or throat of those infected. It can also be picked up from the items used by infected individuals, such as face towels.</p>
<p>Crowded conditions and poor sanitation have been identified as possible enabling factors. </p>
<p>The signs and symptoms of trachoma include: mild itching and irritation of the eyes and eyelids, a discharge of mucus and pus, eyelid swelling and sensitivity to light. </p>
<p>Others are ocular pain, redness of the eye and vision loss. Young children are the <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0009067">most susceptible</a> to trachoma infection. It usually progresses slowly, presenting with more painful symptoms at adulthood.</p>
<p>Repeated episodes of active trachoma can cause the eyelid to be scarred. In some individuals this leads to trachomatous trichiasis, in which the eyelashes turn inward and touch the eye, causing extreme pain. If left untreated it can lead to blindness. </p>
<p>Treating trachoma requires a strategy that integrates four steps known as <a href="https://www.trachomacoalition.org/prevention-and-treatment-strategy">“SAFE”</a>. The letters stand for surgery (to alleviate eye pain or prevent further complications), antibiotics, facial cleanliness and environmental sanitation.</p>
<h2>The Gambian success story</h2>
<p>The Gambia <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1041660/">established</a> an eye care programme in 1986. It also initiated policies that helped in combating the condition. </p>
<p>The country mobilised resources through partnerships with local and international specialists, such as the London School of Hygiene and Tropical Medicine.</p>
<p>A trachoma task force was created under the Gambian National Eye Programme. This was helped by the small size of the country’s population, <a href="https://www.worldometers.info/world-population/gambia-population/#:%7E:text=Gambia%202020%20population%20is%20estimated,(and%20dependencies)%20by%20population">2.4 million</a>, which allowed intervention to easily reach most citizens.</p>
<p>Clinical staff were trained and retrained to deliver surgical procedures to manage the disease. Lid surgeries were then carried out to correct turning in of scarred eyelids and damage to the cornea.</p>
<p>The Gambia undertook campaigns to educate the public on the risks posed by the disease, and about preventive measures like hygiene. Open defecation and proper face and hand hygiene were addressed by building latrines and boreholes for communities.</p>
<p>It also created a network of eye care units across the country with the sole aim of diagnosing and treating people with trachoma. High potency antibiotics were also mass administered to reduce the average bacterial load in the endemic areas of The Gambia.</p>
<p>Thousands of community health volunteers were trained to go from house to house to find people with the disease. The government had support from several NGOs. The Gambia also adhered to the World Health Organisation’s <a href="https://www.trachomacoalition.org/prevention-and-treatment-strategy">SAFE strategy</a> for eliminating trachoma. </p>
<p>A major component of the SAFE strategy is the mass distribution and administration of Azithromycin. This antibiotic was donated by Pfizer to national programmes that are implementing the trachoma strategy in The Gambia. This led to monitoring of the bacteria load in a community before and after treatment. </p>
<p>Recent <a href="https://www.nature.com/articles/s41598-017-15056-7#Sec6">studies</a> have been done in The Gambia on measuring the rate of reinfection after mass treatment programmes. The <a href="https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0004906">experts do not</a> foresee a reemergence of trachoma in the country even with the risk of infected individuals coming from Senegal to Gambia, where disease is endemic.</p>
<p>The Gambia’s success in eliminating trachoma prevents the occurrence of about <a href="https://pubmed.ncbi.nlm.nih.gov/9828780/">100,000</a> new cases, saving people pain and possible blindness. It also means that resources previously allocated to combating the disease can now be reallocated to other public health conditions.</p><img src="https://counter.theconversation.com/content/160716/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The Gambia’s success in eliminating trachoma means that resources previously allocated to combating the disease can now be reallocated to other public health conditionsMusa Mutali, Lecturer of Optometry, University of BeninLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1606832021-06-01T16:39:57Z2021-06-01T16:39:57ZMacular degeneration is a leading cause of blindness. Here’s how to prevent it<figure><img src="https://images.theconversation.com/files/399869/original/file-20210510-18-1hk45fb.jpg?ixlib=rb-1.1.0&rect=2%2C0%2C1347%2C667&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Macular degeneration can result in blurred or no vision in the center of the visual field. </span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/">(Shutterstock)</a></span></figcaption></figure><p>Jacques was a very active retiree. That ended one November morning as his life was suddenly turned upside down. When he woke that day, he could not see out of one eye. Panicked, he came to see me right away. </p>
<p>Jacques had been diagnosed with age-related macular degeneration (AMD) a few years earlier. His condition had been stable, but now it suddenly progressed to the most severe form of the disease, “<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3404137/">wet degeneration</a>.” This stage is characterized by the sudden development of a network of new blood vessels that ooze into the deep layers of the retina, causing a rapid loss of functional vision in the affected eye.</p>
<p>An urgent referral to ophthalmology is made in cases like these because the window of opportunity for treatment is narrow. Immediate treatment usually results in <a href="https://www.aao.org/preferred-practice-pattern/age-related-macular-degeneration-ppp">the best prognosis</a>. Jacques managed to get treatment within a few days.</p>
<p>The ophthalmologist gave him <a href="https://www.cochrane.org/CD005139/EYES_anti-vascular-endothelial-growth-factor-neovascular-age-related-macular-degeneration">intraocular injections</a> of medication, but this only improved his vision slightly. Jacques was depressed and his anxiety was increasing. He felt useless and had lost considerable autonomy.</p>
<p>The loss of an eye is a traumatic event, regardless of the patient’s age. While the significant negative psychological effects are well documented for <a href="https://pubmed.ncbi.nlm.nih.gov/26893539/">older patients</a>, recent publications also report the same adverse consequences in <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5328297/">younger populations</a>.</p>
<p>For example, the rate of depression is six times greater in those with significant vision loss than in the general population (<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792986/">25 per cent versus four per cent</a>).</p>
<h2>Hope for patients</h2>
<p>So what can we do to help Jacques? We can’t promise that his vision will be fully restored. Although injection treatments can be effective, the basic degeneration will not go away. The best option for Jacques is to refer him to a visual impairment rehabilitation centre where he will receive help from a variety of professionals.</p>
<p>At this centre, he will be seen by specialists trained to treat visual impairment and its repercussions on the lives of people who suffer from it, and on the people around them. Understanding this reality is the first step toward helping patients address their needs.</p>
<p>The next step, after providing psychological support to Jacques, is to optimize his visual condition. Optometrists who specialize in low vision can prescribe optical aids to help Jacques regain some of his visual function, including magnifiers, vision aids and specialized glasses that can be provided through a government program designed for this purpose.</p>
<p>Specialists in visual impairment rehabilitation (VIR) trained at the school of optometry of the University of Montréal (the only institution in Canada that offers a master’s program in VIR), can then help Jacques learn new strategies to carry out his daily activities. Specialized educators can help him to use a computer and specific software. When needed, orientation and mobility specialists teach people with visual impairments methods how to safely orient themselves and get around whether on the street or in an unfamiliar environment.</p>
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<img alt="" src="https://images.theconversation.com/files/391277/original/file-20210323-18-1nq7b4v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/391277/original/file-20210323-18-1nq7b4v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/391277/original/file-20210323-18-1nq7b4v.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/391277/original/file-20210323-18-1nq7b4v.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/391277/original/file-20210323-18-1nq7b4v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/391277/original/file-20210323-18-1nq7b4v.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/391277/original/file-20210323-18-1nq7b4v.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Age-related macular degeneration (AMD) can result in blurred or no vision in the centre of the visual field.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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</figure>
<p>A social worker, aware that the impacts of a visual handicap go far beyond the person experiencing it, will accompany Jacques during his rehabilitation process and communicate with his family. In short, Jacques will have a good support system and will be able to regain a certain level of autonomy in his life, which, in turn, will have a positive impact on his morale. <a href="http://www.aqdm.org/home.html">Support groups</a> can also help him in his efforts and if, thanks to effective injections, his visual acuity improves, he will be in a win-win situation.</p>
<p>However, Jacques still has other concerns about his disease. He is worried that his children will develop similar conditions, especially one of his sons.</p>
<h2>Several risk factors</h2>
<p>Age-related macular degeneration is aptly named: its prevalence increases with the age of the patients. Nearly one million Canadians — 300,000 in Québec alone — suffer from AMD. Of these, <a href="https://www.inesss.qc.ca/fileadmin/doc/INESSS/Rapports/DMLA/Note_informative_DMLA.pdf">10 to 15 per cent have the wet form</a>, like Jacques. AMD is the leading cause of blindness in people over the age of 65.</p>
<p>In addition to aging, other risk factors associated with the development of the disease include family history, ethnic origin (white people are more affected), gender (women are more affected), atherosclerotic and vascular diseases, obesity and sun exposure (phototoxicity of the retinal cells).</p>
<p>Smoking also plays an important role. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3866712/">Consuming 25 cigarettes per day</a> doubles the risk of severe damage. Exposure to second-hand smoke is also harmful. The chemicals absorbed during exposure to smoke <a href="https://pubmed.ncbi.nlm.nih.gov/30426163/">increase the absorption of harmful sunlight by the retina by 1,000 times</a>.</p>
<p>For Jacques’ son, the risk of developing AMD is clear but so are his options. He will not be able to change his genes, prevent himself from aging or change his ethnicity or chromosomes. However, he can control the modifiable factors: he can quit smoking, control his weight and stay physically active.</p>
<hr>
<p>
<em>
<strong>
À lire aussi :
<a href="https://theconversation.com/glaucoma-visions-silent-killer-113878">Glaucoma: Vision's silent killer</a>
</strong>
</em>
</p>
<hr>
<p>Diet can play a preventive role. Reducing fat intake in the diet and ensuring adequate omega-3 consumption (forms of triglyceride, 800 mg DHA/EPA per day) <a href="https://pubmed.ncbi.nlm.nih.gov/18779490/">are important</a>. However, adding vitamins formulated for eye health to the mix is not recommended in Jacques’ case. Vitamins are only effective in treating dry AMD in its middle stages, not for preventing it. However, they are one of the few ways Jacques can reduce the risk of having his other eye affected and losing all his functional vision.</p>
<p>It is imperative for both Jacques and his son to follow the doctor’s recommendations on managing vascular problems (hypertension, cholesterol, diabetes). When poorly controlled, these conditions significantly increase the risk of developing wet AMD.</p>
<p>Remember, macular degeneration is first and foremost a vascular disease: the blood vessels are no longer able to nourish the retinal cells and no longer get rid of their metabolic waste efficiently. As a result, the cells die. New blood vessels develop, but they are fragile and, when they break, flood the retina with fluid.</p>
<p>Finally, both father and son will need to protect themselves from the sun’s harmful rays, either with a transparent filter (UV400) in their regular prescription glasses or by wearing good quality sunglasses when they are outdoors. Their eye care professionals will be able to advise them about this.</p>
<p>Jacques’ spirits are not high, but I have given him some hope that better days lie ahead. He knows he can count on a team of professionals to support him and that he will not be dealing with his condition alone. There is hope. And hope is the first thing that makes it possible to overcome the impacts of any disease.</p><img src="https://counter.theconversation.com/content/160683/count.gif" alt="La Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Langis Michaud ne travaille pas, ne conseille pas, ne possède pas de parts, ne reçoit pas de fonds d'une organisation qui pourrait tirer profit de cet article, et n'a déclaré aucune autre affiliation que son organisme de recherche.</span></em></p>Age-related macular degeneration (AMD) lives up to its name: Its prevalence increases with age and it is the leading cause of blindness in people over 65 years old.Langis Michaud, Professeur Titulaire. École d'optométrie. Expertise en santé oculaire et usage des lentilles cornéennes spécialisées, Université de MontréalLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1579162021-04-18T12:51:50Z2021-04-18T12:51:50ZCurious Kids: What do blind people experience in their dreams?<figure><img src="https://images.theconversation.com/files/394320/original/file-20210409-21-1mj6tit.jpg?ixlib=rb-1.1.0&rect=36%2C18%2C5970%2C3989&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The dreams of a person without sight since birth can be just as vivid and imaginative as those of someone with normal vision.</span> <span class="attribution"><span class="source">(Unsplash)</span></span></figcaption></figure><figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/281719/original/file-20190628-76743-26slbc.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/281719/original/file-20190628-76743-26slbc.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=293&fit=crop&dpr=1 600w, https://images.theconversation.com/files/281719/original/file-20190628-76743-26slbc.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=293&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/281719/original/file-20190628-76743-26slbc.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=293&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/281719/original/file-20190628-76743-26slbc.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=368&fit=crop&dpr=1 754w, https://images.theconversation.com/files/281719/original/file-20190628-76743-26slbc.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=368&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/281719/original/file-20190628-76743-26slbc.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=368&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
</figcaption>
</figure>
<p><em>Curious Kids is a series for children of all ages. Have a question you’d like an expert to answer? Send it to <a href="mailto:curiouskidscanada@theconversation.com">CuriousKidsCanada@theconversation.com</a>.</em></p>
<blockquote>
<p>What do blind people experience in their dreams? — James</p>
</blockquote>
<p>Humans are extremely visual. Nearly <a href="https://www.rochester.edu/pr/Review/V74N4/0402_brainscience.html">half of our brain is devoted to processing visual information</a>. Most of the brain networks responsible for providing vision <a href="https://faculty.washington.edu/chudler/plast.html">are established early in life</a>.</p>
<p>This means that <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3722610/">from about the time of birth we begin our lifelong collection of experiences and memories</a> that strongly rely on vision. </p>
<p>Throughout life, we associate most of our interactions with visual images rather than with experiences from our other senses such as hearing or smell. </p>
<p>For those of us with normal vision, <a href="https://doi.org/10.1016/j.tics.2009.12.001">dreams are full of the visual images we experience during our waking life</a>. To understand what blind people experience in their dreams, we must distinguish the experiences of those who were blind at birth from those that became blind later in life. </p>
<h2>Just as vivid and imaginative</h2>
<p>Humans born without sight are not able to collect visual experiences, so <a href="https://www.scientificamerican.com/article/superpowers-for-the-blind-and-deaf/">they understand the world entirely through their other senses</a>. As a result, people with blindness at birth develop an amazing ability to understand the world through the collection of experiences and memories that come from these non-visual senses. </p>
<figure class="align-center ">
<img alt="Woman waking up in bed" src="https://images.theconversation.com/files/394333/original/file-20210409-21-1n9k6kp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/394333/original/file-20210409-21-1n9k6kp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=429&fit=crop&dpr=1 600w, https://images.theconversation.com/files/394333/original/file-20210409-21-1n9k6kp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=429&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/394333/original/file-20210409-21-1n9k6kp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=429&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/394333/original/file-20210409-21-1n9k6kp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=539&fit=crop&dpr=1 754w, https://images.theconversation.com/files/394333/original/file-20210409-21-1n9k6kp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=539&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/394333/original/file-20210409-21-1n9k6kp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=539&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The dreams of people who develop blindness later in life become less visual as their time without vision increases.</span>
<span class="attribution"><span class="source">(Kinga Cichewicz/Unsplash)</span></span>
</figcaption>
</figure>
<p>The dreams of a person who has been without sight since birth can be just as vivid and imaginative as those of someone with normal vision. They are unique, however, because their <a href="https://wtamu.edu/%7Ecbaird/sq/2020/02/11/do-blind-people-dream-in-visual-images/">dreams are constructed from the non-visual experiences and memories they have collected</a>. </p>
<p>While a person with normal vision will dream about a familiar friend using visual memories of shape, lighting and colour, a blind person will associate the same friend with a unique combination of experiences from their non-visual senses that act to represent that friend. </p>
<p>In other words, people blind at birth have similar overall dreaming experiences but <a href="https://www.bbc.com/news/blogs-ouch-28853788">they do not dream in pictures</a>. </p>
<p>The dream experience of a person who lost vision later in life is very different than someone who never had vision. People that lose vision later in life had the ability to collect many visual experiences that can appear in their dreams and in a manner very similar to a sighted person. </p>
<p>Interestingly — and perhaps expected — <a href="https://doi.org/10.1016/j.sleep.2013.12.008">the dreams of people who develop blindness later in life become less visual as their time without vision increases</a> and as they collect more experiences without vision. </p>
<hr>
<p><em>Hello, curious kids! Do you have a question you’d like an expert to answer? Ask an adult to send your question to <a href="mailto:curiouskidscanada@theconversation.com">CuriousKidsCanada@theconversation.com</a>. Please tell us your name, age and the city where you live.</em>
<em>And since curiosity has no age limit — adults, let us know what you’re wondering, too. We won’t be able to answer every question, but we will do our best.</em></p>
<hr><img src="https://counter.theconversation.com/content/157916/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kevin Duffy receives funding from the Natural Sciences and Engineering Research Council of Canada, and from the Canadian Institutes of Health Research. </span></em></p>A curious kid asks: what do blind people experience in their dreams?Kevin Duffy, Professor, Department of Psychology and Neuroscience, Dalhousie UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1320862020-10-08T00:57:37Z2020-10-08T00:57:37ZWe could be doing more to prevent vision loss for people with diabetes<figure><img src="https://images.theconversation.com/files/362307/original/file-20201008-18-zimff8.jpg?ixlib=rb-1.1.0&rect=0%2C17%2C5751%2C3707&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Diabetes-related vision loss is the leading cause of blindness for <a href="https://www.diabetesaustralia.com.au/what-is-diabetes">working-aged Australians</a>. Yet it’s almost entirely preventable. </p>
<p>A recent <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ceo.13830">Australian study</a> found only half of people with diabetes get the <a href="https://www.sydney.edu.au/news-opinion/news/2020/10/01/living-with-diabetes-get-your-eyes-checked-.html?tc=edm%7Cnews-opinion-stream-brnd%7Cuniversity%7C%7C">recommended annual eye checks</a>.</p>
<p>We could be doing things better.</p>
<h2>One of many complications</h2>
<p>Around <a href="https://www.diabetesaustralia.com.au/about-diabetes">1.7 million Australians</a> have diabetes. Aboriginal and Torres Strait Islander people are <a href="https://healthinfonet.ecu.edu.au/healthinfonet/getContent.php?linkid=590810&title=Review+of+diabetes+among+Aboriginal+and+Torres+Strait+Islander+people">three times</a> more likely to develop diabetes than non-Indigenous Australians.</p>
<p>Diabetes occurs when glucose (sugar) in your blood is not converted into energy, so its level becomes too high. Blood glucose is our main source of energy and mostly comes from the food we eat.</p>
<p>Diabetes can be managed, for example through lifestyle modifications, medication, or insulin. <a href="https://www.diabetesaustralia.com.au/living-with-diabetes/managing-your-diabetes/">Diabetes management</a> will be <a href="https://www.tandfonline.com/doi/abs/10.1080/24735132.2020.1771926?journalCode=rfdh20">a different experience</a> for each person, and depend on the type of diabetes they have.</p>
<p>But the central aim is keeping blood sugar levels within a healthy range. When they’re not, people with diabetes are at higher risk of complications, which can affect <a href="https://www.diabetesaustralia.com.au/preventing-complications">all parts of the body</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/a-disease-that-breeds-disease-why-is-type-2-diabetes-linked-to-increased-risk-of-cancer-and-dementia-139298">A disease that breeds disease: why is type 2 diabetes linked to increased risk of cancer and dementia?</a>
</strong>
</em>
</p>
<hr>
<p>The most common complication of diabetes — <a href="https://www.iapb.org/wp-content/uploads/Global-Guideline-for-Type-2-Diabetes-IDF-2012.pdf">globally</a> and for <a href="https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-12-8/tables/4">Australians</a> — is eye disease.</p>
<p>Diabetes-related eye disease affects <a href="https://www.idf.org/component/attachments/attachments.html?id=396&task=download">more than one in three</a> people with diabetes. When left undiagnosed and untreated, it can cause vision loss and blindness.</p>
<h2>What causes it?</h2>
<p>Diabetes-related eye disease can occur when there is damage to the blood vessels on the retina, a thin layer at the back of the eye. This damage limits oxygen and other nutrients reaching <a href="https://www.visionaustralia.org/sites/default/files/docs/default-source/eye-health/Fact-sheets/diabetic-retinopathy-factsheet_v3_web-(accessible).pdf?sfvrsn=0">the eye</a>. </p>
<p>We need a <a href="https://www.opticalmasters.com/healthy-retina-important/">healthy retina</a> to be able to see.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/362070/original/file-20201007-24-115p1by.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/362070/original/file-20201007-24-115p1by.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=409&fit=crop&dpr=1 600w, https://images.theconversation.com/files/362070/original/file-20201007-24-115p1by.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=409&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/362070/original/file-20201007-24-115p1by.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=409&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/362070/original/file-20201007-24-115p1by.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=514&fit=crop&dpr=1 754w, https://images.theconversation.com/files/362070/original/file-20201007-24-115p1by.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=514&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/362070/original/file-20201007-24-115p1by.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=514&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Diabetes-related eye disease can occur when the blood vessels at the back of the eye become damaged.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>The chance of developing diabetes-related eye disease is <a href="https://www.ncbi.nlm.nih.gov/pubmed/22301125">higher for some people</a>, including those who have high blood pressure, high cholesterol, or who have had diabetes for many years.</p>
<p>Worryingly, <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ceo.13830">the study</a> we mentioned above found people who had been living with diabetes for ten or more years were even less likely to get regular eye checks. Almost 80% of people in this group didn’t have the recommended annual eye check.</p>
<h2>Prevention and treatment</h2>
<p>When diabetes-related eye disease becomes more advanced, it can cause <a href="https://www.visionaustralia.org/sites/default/files/docs/default-source/eye-health/Fact-sheets/diabetic-retinopathy-factsheet_v3_web-(accessible).pdf?sfvrsn=0">blurred or distorted vision</a> and blindness. But we can prevent most diabetes-related vision loss before it reaches this stage. </p>
<p>Special cameras allow us to look at the retina and see if irregular spots or blood vessels are developing. </p>
<p>At this early stage the disease has no impact on a person’s vision. Once we detect it, we can provide timely treatment with laser therapy or injections. </p>
<p>But without regular eye checks, we might not know until it’s too late.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-australians-die-cause-5-diabetes-57874">How Australians Die: cause #5 – diabetes</a>
</strong>
</em>
</p>
<hr>
<h2>We have made progress</h2>
<p>Strong social impact work from the government, not-for-profits and local health services is already preventing diabetes-related eye disease from developing into vision loss and blindness in many people.</p>
<p>2020 Australian of the Year, ophthalmologist James Muecke, cofounded the not-for-profit <a href="https://sightforall.org/">Sight For All</a> and has brought attention to the issue of <a href="https://www.optometry.org.au/sector_news/eye-surgeon-james-muecke-is-australian-of-the-year-for-2020/">preventable vision loss</a> for people with diabetes.</p>
<p>The federal government is investing in a <a href="https://www.keepsight.org.au/about">national diabetes eye screening program</a>, as well as <a href="http://www.vision2020australia.org.au/news/2018-08-01/good-news-continues-for-indigenous-eye-health-with-program-extension">primary health-care technology and training</a> to embed retinal care in 105 existing health services across Australia. But national programs can put a blanket solution over the population. </p>
<p>When one Aboriginal and Torres Strait Islander <a href="https://www.publish.csiro.au/py/py18030">health-care service</a> introduced cameras in 2008, they screened <a href="https://www.ncbi.nlm.nih.gov/pubmed/20618289">93% of regular clients with diabetes</a> for eye disease — a significant improvement on 16% the previous year. But we found these rates subsequently declined and by 2016, only 22% had an eye check. </p>
<p>We can see just having the technology in primary care is not enough. Ongoing quality improvement is integral to a successful service in the long term.</p>
<figure class="align-center ">
<img alt="A woman checks her blood sugar level." src="https://images.theconversation.com/files/362130/original/file-20201007-16-1x9mvps.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/362130/original/file-20201007-16-1x9mvps.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/362130/original/file-20201007-16-1x9mvps.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/362130/original/file-20201007-16-1x9mvps.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/362130/original/file-20201007-16-1x9mvps.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/362130/original/file-20201007-16-1x9mvps.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/362130/original/file-20201007-16-1x9mvps.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">About 1.7 million Australians have diabetes.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>What else can we do?</h2>
<p>In the case of diabetes-related eye disease, the science supporting early detection is advancing every day. But it’s not reaching those who need it the most, including Aboriginal and Torres Strait Islander people.</p>
<p>Having the technology, policy or medicine alone is not sufficient. We need to unlock the potential of communities, empowering everyone to have joint responsibility.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/words-from-arnhem-land-aboriginal-health-messages-need-to-be-made-with-us-rather-than-for-us-100655">Words from Arnhem land: Aboriginal health messages need to be made with us rather than for us</a>
</strong>
</em>
</p>
<hr>
<p>A model of <a href="https://eprints.qut.edu.au/201836/">person-centred eye care</a> would involve:</p>
<ul>
<li><p>making screening and treatment easy to access for people with diabetes. This means addressing physical barriers, such as distance and cost, but also cultural, emotional and social barriers that might stop people from getting their eyes checked</p></li>
<li><p>thinking about the screening experience, including:</p>
<ul>
<li><strong>before</strong>: how will we motivate people to get their eyes checked, especially if they’re not experiencing any problems with their vision?</li>
<li><strong>during</strong>: how can eye checks be streamlined with regular diabetes care, and how can we make the process as seamless as possible for patients?</li>
<li><strong>after</strong>: how do we ensure they come back every year?</li>
</ul></li>
<li><p>considering the experience of the diverse teams providing this care, including keeping staff well equipped, trained and motivated</p></li>
<li><p>investing in researching, developing and testing the non-medical components of eye care services. For example, the reminder system, the workflow of each eye check, and how the results are delivered to patients.</p></li>
</ul>
<p>We must pursue <a href="https://www.publish.csiro.au/py/PY18030">ongoing improvement</a> of eye care that involves and empowers people with diabetes, their health teams and communities to develop services, systems, new technology and policies that meet their needs.</p>
<p>There is potential for us to prevent blindness in more people with diabetes.</p><img src="https://counter.theconversation.com/content/132086/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Clare Villalba receives funding from the Australian Federal Government and the Queensland University of Technology. She previously worked for the Queensland University of Technology. </span></em></p><p class="fine-print"><em><span>Dr Anjali Jaiprakash is a co-founder of Integral Scopes Pty Ltd, an Australian start-up company developing retinal imaging technology.</span></em></p><p class="fine-print"><em><span>Anthony Russell is affiliated with the Australian Diabetes Society. </span></em></p>Diabetes-related eye disease affects more than one in three people with diabetes. But it doesn’t have to turn into vision loss and blindness.Clare Villalba, Service Designer and Researcher (PhD), Queensland University of TechnologyAnjali Jaiprakash, Senior Research Fellow and Deputy Director, Centre for Biomedical Technologies, Queensland University of TechnologyAnthony Russell, Associate Professor, Faculty of Medicine, The University of QueenslandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1452762020-09-03T12:40:13Z2020-09-03T12:40:13Z‘Curing blindness’: why we need a new perspective on sight rehabilitation<figure><img src="https://images.theconversation.com/files/356355/original/file-20200903-16-1ifm79u.jpg?ixlib=rb-1.1.0&rect=50%2C0%2C5637%2C3755&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Many blind people want sight rehabilitation technologies to increase their independence.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/blind-visually-impaired-childkidtoddlerpreschoolerboy-walking-through-1192950880">Tracy Spohn/ Shutterstock</a></span></figcaption></figure><p>In a society <a href="https://www.smh.com.au/opinion/the-challenges-of-using-technology-when-youre-blind-20170517-gw6jp5.html">focused on visual communication</a>, being blind can have severe disadvantages. In fact, research shows blind people are at <a href="https://www.rnib.org.uk/sites/default/files/Employment%20status%20and%20sight%20loss%202017.pdf">higher risk of unemployment</a>, <a href="https://hqlo.biomedcentral.com/articles/10.1186/s12955-019-1096-y">social isolation, and lower quality of life</a> than sighted people. Given the huge impact blindness has on society and those without vision, the drive to find a “cure” for blindness has become a profitable market. </p>
<p>Many new, cutting-edge developments that “<a href="https://www.nationalgeographic.com/magazine/2016/09/blindness-treatment-medical-science-cures/">cure blindness</a>” build on promises they often <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1772467/">cannot keep</a>, leaving many blind people and their families feeling disappointed and disillusioned. But what does “curing blindness” actually mean – and how can it be achieved in a way that it most benefits the blind person? </p>
<p>When we think of “curing blindness”, we often think about <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6350159/">restoring the lost sense</a> – for example, through vision-enhancing technology, bionic eyes, or gene therapy. This is because we typically treat an impaired sense by focusing on the damaged sensory organ. But while our eyes deliver the sensory input, by transforming light into electrical impulses that our brains can use, most visual perception <a href="https://theconversation.com/how-do-our-brains-reconstruct-the-visual-world-49276">happens in the brain</a>. </p>
<p>The perception of a visual object, a coffee cup, say, is created across different <a href="https://www.youtube.com/watch?v=P-7mO2FhaVE">hierarchical levels</a> in the visual cortex of our brain. Simple two-dimensional features, such as edges and colours, are combined into more complex shapes, which are in turn combined into the perception of whole objects, like our coffee cup. Across these different levels, our previous visual and non-visual experiences strongly influence <a href="http://people.psych.cornell.edu/%7Ejec7/pubs/ostrovskyetal.pdf">how we perceive</a> the final object.</p>
<figure class="align-center ">
<img alt="Steaming coffee cup on table." src="https://images.theconversation.com/files/356352/original/file-20200903-24-1vtyc9y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/356352/original/file-20200903-24-1vtyc9y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/356352/original/file-20200903-24-1vtyc9y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/356352/original/file-20200903-24-1vtyc9y.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/356352/original/file-20200903-24-1vtyc9y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/356352/original/file-20200903-24-1vtyc9y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/356352/original/file-20200903-24-1vtyc9y.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Most of what we ‘see’ happens in the brain itself.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/lighting-window-hot-white-coffee-cup-348244271">NOPPHARAT42896395/ Shutterstock</a></span>
</figcaption>
</figure>
<p>Because of the complex nature of visual perception, sight is incredibly difficult to restore, and achieving a satisfactory level of visual function is not easy. Despite significant advances in <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6350159/">visual restoration technology</a>, even the best visual implants typically only allow visual acuity of 1/60, which is technically still classed as <a href="https://www.who.int/news-room/fact-sheets/detail/blindness-and-visual-impairment">blindness</a> by the World Health Organization. While this minimal form of light perception is already great progress, it’s <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0134369">not enough</a> to allow a person to live independently. </p>
<p>While every blind person has their own ideas of what sight rehabilitation should do for them, what resonates with most is the aim to <a href="https://theconversation.com/to-provide-eyes-or-not-to-provide-eyes-36408">increase independence</a> by allowing blind people to gain more access to visual information. </p>
<p>But does the brain need vision for that? Not necessarily. This is why we need to adopt a different perspective on sensory rehabilitation – one that views vision as part of a greater multisensory experience. After all, perception is rarely based on one sense alone but on a combination of multisensory experiences in which our senses influence each other. </p>
<h2>Multisensory perspective</h2>
<p>The brain has the remarkable ability to compensate for sensory loss by <a href="https://theconversation.com/do-blind-people-have-better-hearing-102282">reorganizing</a> how it processes information. In fact, the brain learns to perceive through the sensory experiences it makes during childhood. If all sensory experience is non-visual, perception will develop around these experiences. So if a person was born without sight, or lost their sight early on in childhood, their perception will develop around the non-visual senses.</p>
<p>This is why, on some tasks, blind people perform better than sighted people, while, on other tasks, they may perform worse. This dichotomy seems to underlie a simple principle: is the sense that is typically used for this task the <a href="https://brill.com/view/journals/msr/28/1-2/article-p71_5.xml">best suited</a> for accessing this information? For example, we are well able to locate a buzzing phone using either our vision or hearing. In this case, more experience finding objects through sound will lead to <a href="https://academic.oup.com/brain/article/137/1/6/365182">superior performance in blind people</a> when only hearing is used. However, given that our vision is much better suited to perceiving people’s faces, blind people usually perform worse than sighted people when <a href="https://pubmed.ncbi.nlm.nih.gov/23399994/">recognising other’s faces through touch</a>.</p>
<p>We know that the brain learns best about the environment when it can access the same information <a href="https://faculty.ucr.edu/%7Easeitz/pubs/Shams_Seitz08.pdf">through multiple senses</a>. This benefits our perception by <a href="https://www.semanticscholar.org/paper/Merging-the-senses-into-a-robust-percept-Ernst-B%C3%BClthoff/66ed3eaa6ae8e7a0e48c268d579c890a2968c061">enhancing accuracy and precision</a>. But if we want to make use of this perceptual benefit in vision rehabilitation, we need to know whether the blind brain actually learned to generate it. </p>
<p>It turns out that this <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/desc.13001">depends on the age</a> a person goes blind. Blindness before the age of eight or nine years influences how touch and hearing are used together to estimate object size. But blindness after this age impairs the ability to enhance perception through multisensory combination. </p>
<p>So what does that mean for sensory rehabilitation? We know that there’s not one best solution for all, but we also know that the age of blindness-onset can provide important clues. If a person has been blind since birth or early childhood, the brain does not know how to process visual information, so vision restoration may not bring much benefit. If, however, sight was lost later in life, the brain is best wired to perceive its surroundings through vision.</p>
<p>But there’s still good news for the congenitally and early blind: the enhanced perceptual abilities in the remaining senses can be used to <a href="https://www.sciencedirect.com/science/article/pii/S0149763413002765">substitute vision</a>. In fact, visual information does not have to be taken up through the eyes – it can also reach the brain through our <a href="https://theconversation.com/camera-mobile-headphones-the-low-cost-set-up-that-can-help-blind-people-see-35936">other senses</a>. In order for that to happen, it first needs to be translated into a different “sensory language”. For example, visual information can be directly <a href="https://www.seeingwithsound.com/">translated into sound</a>. Through training, the brain then learns to use this <a href="https://www.frontiersin.org/articles/10.3389/fpsyg.2020.01443/full">new sensory language</a>, opening up the visual world through the use of another sense. </p>
<p>While sensory restoration advancements have come a long way, we are still far from an optimal solution that allows blind people to access visual information and equally partake in society. By realising that perception depends on individual experiences, we can better develop solutions that will most benefit each person – whether that aims to restore their sight, or seeks to use their other senses instead.</p><img src="https://counter.theconversation.com/content/145276/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Meike Scheller's work has been carried out at the University of Bath with support from the University, the British Academy, and the NIHR. </span></em></p>Perception is multisensory.Meike Scheller, Research Fellow, University of AberdeenLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1419652020-07-09T19:18:46Z2020-07-09T19:18:46ZCOVID-19 presents new obstacles for people who use service dogs<figure><img src="https://images.theconversation.com/files/346169/original/file-20200707-194396-1p223rh.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1356%2C667&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Normally, working dogs make life easier for people with disabilities. However, since the beginning of the pandemic, the barriers to accessibility have never been so great.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>While browsing through a Facebook group for guide, mobility and service dog recipients, a post by one of the members jumped out at me. “Did you dare to go out with your dog?” it asked. “Are you able to go out of your home?” Since the early days of the COVID-19 crisis in March, many have had their eyes glued to the news and are following government guidelines. But in all this turmoil, have we forgotten about citizens living with a disability?</p>
<p>I am a doctoral student at the University of Ottawa and a resource teacher for suspended or expelled students. I specialize in the areas of inclusion and service dogs. My research project allowed me to have Toulouse, an assistance dog from the Mira Foundation trained specifically for my special needs students. Since March 2019, she has been accompanying me everywhere and has helped me discover a reality that I didn’t expect.</p>
<p>As a researcher in this field, I am fortunate to have access to networks of assistance dog beneficiaries. With this article, I would like to offer them a public voice in order to draw a portrait of their reality since the beginning of the COVID-19 crisis.</p>
<h2>A lack of accessibility</h2>
<p><a href="https://cjds.uwaterloo.ca/index.php/cjds/article/view/355">Ableism</a> is the word used to describe the extent of multi-dimensional discrimination against people living with disabilities. People with working dogs are victims of it on a daily basis. Indeed, our society is designed for citizens without disabilities and de facto obliges people with disabilities to fight for their essential rights, such as accessibility, despite the provisions included in the <a href="https://www.canada.ca/en/canadian-heritage/services/rights-people-disabilities.html">Canadian Charter of Rights and Freedoms</a> and the <a href="https://laws-lois.justice.gc.ca/eng/acts/h-6/">Canadian Human Rights Act</a>, which “guarantee equal rights and freedom from discrimination to persons with disabilities.”</p>
<p>Normally, working dogs accompany these individuals and facilitate their daily life. However, since the beginning of the COVID-19 crisis, the barriers to accessibility have never been so great.</p>
<h2>The risks of exclusion are increasing</h2>
<p>Anne-Marie Bourcier is visually impaired and received her third guide dog from the Mira Foundation. With her dog, Machine, she routinely takes the bus and subway to go shopping or have lunch with a friend. Autonomy is the watchword for this duo. However, since the pandemic, they no longer go out in public. She wrote me a long email to let me know about her new reality.</p>
<blockquote>
<p>I don’t see how I could be autonomous with my guide dog in a grocery store. Where do the arrows start? Where are the sinks for washing hands? Am I going to graze someone? Are we going to make a mistake in the aisles? Is someone going to help me once I get there? My guide dog is used to going straight into the store. If we go in, will they tell us to get out and get in line? I think it’s quite complex.</p>
</blockquote>
<p>These questions remain unanswered for Bourcier and many others. The physical obstacles are major, especially for a dog that has not been trained to deal with the health crisis and prevention measures.</p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/340682/original/file-20200609-21191-1k1h3ov.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/340682/original/file-20200609-21191-1k1h3ov.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=906&fit=crop&dpr=1 600w, https://images.theconversation.com/files/340682/original/file-20200609-21191-1k1h3ov.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=906&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/340682/original/file-20200609-21191-1k1h3ov.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=906&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/340682/original/file-20200609-21191-1k1h3ov.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1139&fit=crop&dpr=1 754w, https://images.theconversation.com/files/340682/original/file-20200609-21191-1k1h3ov.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1139&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/340682/original/file-20200609-21191-1k1h3ov.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1139&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Machine is a Bernese mountain dog.</span>
<span class="attribution"><span class="source">(Anne-Marie Bourcier)</span></span>
</figcaption>
</figure>
<p>While we might assume that people give priority to those living with disabilities, the opposite is true. For example, another guide dog recipient explains that he often has to avoid people who do not give way to him.</p>
<h2>Dogs and social distancing</h2>
<p>Added to this are situations where the disability is not visible and the public believes that the dog is in training. Awareness campaigns on social distancing have been conducted by the CNIB Foundation.</p>
<p>In addition to the physical obstacles, there are also psychological obstacles. “At the hospital, I need my dog and my partner for my MRI. I had to negotiate for entry,” says Geneviève, a traction dog recipient. The mask makes it hard for her to breathe and she has to constantly adjust her tone of voice to give instructions to her dog. “I feel badly about taking her in. With the distancing, there is a fear of people and sometimes small alleys. I’m scared to go out again.”</p>
<p>Thus, the risk of social isolation is amplified for service dog users who have to stay at home and forget about their routine.</p>
<h2>The other side of the coin</h2>
<p>Despite the difficulties, there are some positive experiences. Several beneficiaries are happy that the implementation of social distancing rules means nobody tries to pet their dog, which usually happens several times per outing. This distraction may cause the animal to make a mistake, which could put the safety of the user at risk.</p>
<p>In fact, all of them are grateful to have a companion during this crisis. In spite of the isolation, the beneficiaries can count on the reassuring presence of their animal. Marie Eve Leduc is the mother of a child diagnosed with an autism spectrum disorder (ASD) who has an assistance dog. She is relieved to have had Amhara for her boy.</p>
<blockquote>
<p>During confinement, Amhara proved her worth. Since Arthur hasn’t returned to school, he’s spending a lot more time with her! He spends long moments holding on to her, talking to her, petting her.… The change in his habits went well, thanks to our dog! </p>
</blockquote>
<p>After several months of confinement, the reopening of stores has also made going out again easier.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/340695/original/file-20200609-21201-v0xhou.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/340695/original/file-20200609-21201-v0xhou.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=512&fit=crop&dpr=1 600w, https://images.theconversation.com/files/340695/original/file-20200609-21201-v0xhou.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=512&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/340695/original/file-20200609-21201-v0xhou.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=512&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/340695/original/file-20200609-21201-v0xhou.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=643&fit=crop&dpr=1 754w, https://images.theconversation.com/files/340695/original/file-20200609-21201-v0xhou.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=643&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/340695/original/file-20200609-21201-v0xhou.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=643&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Arthur holds Amhara, a black Labrador service dog.</span>
<span class="attribution"><span class="source">(Marie Eve Leduc)</span></span>
</figcaption>
</figure>
<h2>Solutions exist</h2>
<p>As the process of deconfinement continues in Canada, many recipients are concerned that they will be overlooked as the measures rarely take into consideration <a href="https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/guidance-documents/people-with-disabilities.html">Canadians living with disabilities</a>. A few solutions are therefore suggested for them, including priority entry at all times, reserved hours and a shopping assistance service.</p>
<p><a href="https://www.hsdc.org/accessible-deaf-friendly-face-mask/">Masks with a transparent screen</a> or visors to allow deaf or hard of hearing people to read lips would be necessary in essential services, particularly at the reception desk. Finally, distancing could become permanent around recipients of working dogs.</p>
<p>In this wave of change, it is up to us to seize the opportunity to make our society a more accessible place.</p>
<p><em>The author thanks the beneficiaries of the Mira Foundation who have generously shared their photos and testimonials, as well as the Canadian National Institute for the Blind/Institut national canadien pour les aveugles for the illustration.</em></p><img src="https://counter.theconversation.com/content/141965/count.gif" alt="La Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Virginie Abat-Roy is doing research with the Mira Foundation. She has received funding from the University of Ottawa.</span></em></p>There is an increase in physical and psychological barriers to accessibility for service dog users in the COVID-19 era. However, solutions exist.Virginie Abat-Roy, Candidate au PhD en éducation, L’Université d’Ottawa/University of OttawaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1412762020-06-29T20:06:40Z2020-06-29T20:06:40ZAudio description finally comes to ABC and SBS<figure><img src="https://images.theconversation.com/files/344186/original/file-20200626-33524-139mlsu.jpg?ixlib=rb-1.1.0&rect=8%2C26%2C5982%2C3952&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Following a A$2 million funding injection from the federal government, the ABC and SBS have <a href="https://www.sbs.com.au/guide/article/2020/06/19/sbs-launches-audio-description-service-blind-or-vision-impaired-audiences">introduced</a> an audio description service for audiences who are blind or vision impaired. </p>
<p>Audio description is a voice-over narration describing important visual elements, including facial expressions, actions, costumes or the weather. Up to 14 hours of audio described content will be available on each service per week, using existing audio narration from international productions and descriptions made locally.</p>
<p>More than <a href="https://www.vision2020australia.org.au/our-work/avoidable-blindness-and-vision-loss/">453,000 Australians</a> live with blindness and vision impairment. This greatly impacts their ability to consume visual media like television and participate in cultural events such as sport, theatre, museums and galleries. Without audio description, a significant portion of the population is excluded from fully engaging with these activities.</p>
<p>The launch of audio description on Australia’s public broadcasters comes following almost 30 years of advocacy. </p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/O7j4_aP8dWA?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The trailer for Disney’s Frozen with audio description.</span></figcaption>
</figure>
<h2>A long time coming</h2>
<p>Audio description is far from new. </p>
<p>In 1929, in an attempt to attract new audiences to cinema when sound was introduced, an <a href="http://audiodescriptionau.com.au/?page_id=546">audio described screening</a> of Bulldog Drummond was held in New York City.</p>
<p>In the 1940s, radio presenter Gerardo Esteban <a href="http://www.jostrans.org/issue07/art_arandes.php">started</a> narrating films for his listeners in Spain. </p>
<p>Audio description was available on television in the US in 1982, with PBS’ American Playhouse offering a <a href="https://audiodescriptionsolutions.com/about-us/a-brief-history-of-audio-description-in-the-u-s/">simulcast</a> audio description via radio. In the 1990s, audio description became available like closed captioning – turned on and off by the preference of the viewer. </p>
<hr>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/four-things-students-with-vision-impairment-want-you-their-teachers-and-friends-to-know-115377">Four things students with vision impairment want you (their teachers and friends) to know</a>
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<hr>
<p>As Australia began its plan to transition to digital television in 1993, advocate bodies for people who are blind or vision impaired called for the introduction of audio description when this service would be launched. </p>
<p>But while blind or vision impaired Australians were increasingly able to access audio description on <a href="https://mediaaccess.org.au/tv-video/dvd-and-blu-ray/audio-description-on-dvd">DVDs</a>, in <a href="https://www.visionaustralia.org/community/events/audio-description-services/at-the-cinema">cinemas</a>, at <a href="https://www.theaustralian.com.au/arts/review/making-sense-of-the-stage-audio-services-with-description-victoria/news-story/900388e812af706649c481c74e0063fd">cultural events</a> and subscription <a href="https://www.afb.org/aw/16/7/15436">video on demand</a>, television lagged behind.</p>
<p>Audio description <a href="https://www.bca.org.au/adontv/">trials</a> took place on the ABC in 2010, and on iView in 2015. No Australian broadcaster has introduced an ongoing service.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/344185/original/file-20200626-33515-n6u3ha.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/344185/original/file-20200626-33515-n6u3ha.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/344185/original/file-20200626-33515-n6u3ha.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/344185/original/file-20200626-33515-n6u3ha.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/344185/original/file-20200626-33515-n6u3ha.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/344185/original/file-20200626-33515-n6u3ha.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/344185/original/file-20200626-33515-n6u3ha.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Cultural events, like the Wallace & Gromit and Friends exhibition at ACMI in 2017, are just one of the services in Australia which can be audio described.</span>
<span class="attribution"><span class="source">Kate Pardey/Description Victoria</span></span>
</figcaption>
</figure>
<p>Rosalie O’Neil of Sale, Victoria, is vision impaired and lives with severe osteoarthritis. She welcomes the introduction of audio description for a number of groups of people who live with disability or disadvantage: </p>
<blockquote>
<p>TV is a low-cost, low-energy activity for me as sometimes I can’t see or walk around. Audio description opens up accessibility to people with low vision, blind[ness], seizures, autism, movement difficulties, learning difficulties and social difficulties.</p>
</blockquote>
<p>The Department of Communications and the Arts held an <a href="https://www.communications.gov.au/documents/audio-description-working-group-terms-reference">audio description working group</a> in 2017 to discuss options for introducing it on Australian free-to-air television.</p>
<p>The group identified three options: audio description on broadcast television, via on-demand platforms, or through a standalone app. It also encouraged broadcasters to introduce audio description without the implementation of legislation. But it is only now audiences like Roselie can access this feature on free-to-air television.</p>
<h2>Beyond one community</h2>
<p>Accessibility features that help people with disability have a long history of benefiting the mainstream population. </p>
<p>Closed captions were originally intended for people with hearing impairments and are now used by <a href="https://www.refinery29.com/tv-closed-captions-movie-subtitles-benefits">large portions</a> of the audience. Electric toothbrushes were designed to help people with <a href="https://books.google.com.au/books?id=cKWEGOzGz7MC&printsec=frontcover&fbclid=IwAR3y8LR72Un-Gr05f_0MpTIYAzT6a1wEJ7ymEXVkJ40CegLIn_KhcUlXnmA#v=onepage&q=electric%20toothbrush&f=false">limited motor ability</a>, but provide benefits beyond these users. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/B8BD9txkGL4?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">A short audio described clip from The Hunger Games.</span></figcaption>
</figure>
<p>In 2018, we conducted research into the potential benefits of audio description beyond the blind and vision impaired community.</p>
<p>We <a href="https://research.curtin.edu.au/story/australian-tv-well-behind-in-accessibility-for-vision-impaired/">discovered</a> audio description can also benefit sighted people in a variety of ways: from parents caring for children and multitasking around the home, to commuters who want to engage with television but cannot always look at the screen while travelling.</p>
<h2>Work still to do</h2>
<p>The introduction of audio description on the public broadcasters is cause for celebration, but Australia still falls well short of other countries.</p>
<p>In the UK, <a href="https://mediaaccess.org.au/television/audio-description-on-tv/audio-description-on-tv-in-the-uk">10% of content</a> on both free-to-air and subscription television channels must be audio described. In the United States, free-to-air stations in the top 60 TV markets, as well as paid services with over 50,000 subscribers, must provide <a href="https://www.fcc.gov/sites/default/files/audio_description.pdf">seven hours a week</a> of of audio-described programming. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/oscars-audio-description-brings-film-to-life-for-blind-people-it-deserves-an-award-too-112247">Oscars: audio description brings film to life for blind people, it deserves an award too</a>
</strong>
</em>
</p>
<hr>
<p>Emma Bennison, CEO of Blind Citizens Australia, calls for the Australian television industry to go further. She says audio description must be “enshrined in legislation, in the same way captioning is for Australians who are Deaf or hard of hearing.”</p>
<p>The commercial stations have still not made public their plans for this service. Legislating audio description for all Australian broadcasters is the next logical step.</p><img src="https://counter.theconversation.com/content/141276/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Katie Ellis receives funding from The Australian Research Council and the Australian Communications Consumer Action Network. She was a member of the Department of Communications and the Arts Audio Description working group throughout 2017 and has been advising the ABC and SBS on the implementation of Audio Description leading up to this launch.</span></em></p><p class="fine-print"><em><span>Gwyneth Peaty receives funding from the Australian Communications Consumer Action Network.</span></em></p>After nearly 30 years of advocacy, audio description services have finally arrived on the ABC and SBS.Katie Ellis, Professor, Curtin UniversityGwyneth Peaty, Research Fellow, Curtin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1332202020-06-25T12:24:34Z2020-06-25T12:24:34ZGene therapy and CRISPR strategies for curing blindness (Yes, you read that right)<figure><img src="https://images.theconversation.com/files/343286/original/file-20200622-54993-o5z60d.jpg?ixlib=rb-1.1.0&rect=15%2C7%2C5106%2C3394&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Researchers are now testing treatments for several kinds of visual impairment. </span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/blind-10-year-old-boy-reading-a-braille-book-royalty-free-image/523091364?adppopup=true&uiloc=thumbnail_same_series_adp">BRIAN MITCHELL / Getty Images</a></span></figcaption></figure><p>In recent months, even as our attention has been focused on the coronavirus outbreak, there have been a slew of scientific breakthroughs in treating diseases that cause blindness. </p>
<p>Researchers at U.S.-based Editas Medicine and Ireland-based Allergan have administered <a href="https://clinicaltrials.gov/ct2/show/NCT03872479">CRISPR for the first time to a person with a genetic disease</a>. This landmark treatment uses the CRISPR approach to a specific mutation in a gene linked to childhood blindness. The mutation affects the functioning of the light-sensing compartment of the eye, called the retina, and leads to loss of the light-sensing cells.</p>
<p>According to the World Health Organization, <a href="https://www.who.int/news-room/detail/08-10-2019-who-launches-first-world-report-on-vision">at least 2.2 billion people</a> in the world have some form of visual impairment. In the United States, approximately <a href="https://lowvision.preventblindness.org/2013/07/06/numbers-of-people-with-macular-degeneration-and-other-retinal-diseases/">200,000 people suffer from inherited forms of retinal disease</a> for which there is no cure. But things have started to change for good. We can now see light at the end of the tunnel.</p>
<p>I am an ophthalmology and visual sciences researcher, and am particularly interested in these advances because <a href="https://www.umassmed.edu/khannalab/">my laboratory is focusing</a> on designing new and improved gene therapy approaches to treat inherited forms of blindness. </p>
<h2>The eye as a testing ground for CRISPR</h2>
<p>Gene therapy involves inserting the correct copy of a gene into cells that have a mistake in the genetic sequence of that gene, recovering the normal function of the protein in the cell. The eye is an ideal organ for testing new therapeutic approaches, including CRISPR. That is because the eye is the most exposed part of our brain and thus is easily accessible. </p>
<p>The second reason is that retinal tissue in the eye is shielded from the body’s defense mechanism, which would otherwise consider the injected material used in gene therapy as foreign and mount a defensive attack response. Such a response would destroy the benefits associated with the treatment. </p>
<p>In recent years, breakthrough gene therapy studies paved the way to the <a href="https://www.fda.gov/news-events/press-announcements/fda-approves-novel-gene-therapy-treat-patients-rare-form-inherited-vision-loss">first ever Food and Drug Administration-approved gene therapy drug, Luxturna TM</a>, for a devastating childhood blindness disease, <a href="https://ghr.nlm.nih.gov/condition/leber-congenital-amaurosis">Leber congenital amaurosis</a> Type 2. </p>
<p>This form of Leber congenital amaurosis is caused by mutations in a gene that codes for a protein called RPE65. The protein participates in chemical reactions that are needed to detect light. The mutations lessen or eliminate the function of RPE65, which leads to our inability to detect light – blindness. </p>
<p>The treatment method developed simultaneously by groups at University of Pennsylvania and at University College London and Moorefields Eye Hospital involved <a href="https://www.nature.com/news/2008/080428/full/news.2008.786.html">inserting a healthy copy of the mutated gene</a> directly into the space between the retina and the retinal pigmented epithelium, the tissue located behind the retina where the chemical reactions takes place. This gene helped the retinal pigmented epithelium cell produce the missing protein that is dysfunctional in patients. </p>
<p>Although the treated eyes showed vision improvement, as measured by the patient’s ability to navigate an obstacle course at differing light levels, <a href="https://www.aop.org.uk/ot/science-and-vision/research/2015/05/05/lca-gene-therapy-unable-to-stop-long-term-sight-loss">it is not a permanent fix</a>. This is due to the lack of technologies that can fix the mutated genetic code in the DNA of the cells of the patient. </p>
<h2>A new technology to erase the mutation</h2>
<p>Lately, scientists have been developing a powerful new tool that is shifting biology and genetic engineering into the next phase. This breakthrough <a href="http://doi.org/10.1126/science.1225829">gene</a> <a href="http://doi.org/10.1126/science.1231143">editing</a> technology, which is called CRISPR, enables researchers to directly edit the genetic code of cells in the eye and correct the mutation causing the disease. </p>
<p>Children suffering from the disease Leber congenital amaurosis Type 10 endure progressive vision loss beginning as early as one year old. This specific form of Leber congenital amaurosis is caused by a change to the DNA that affects the ability of the gene – called CEP290 – to make the complete protein. The loss of the CEP290 protein affects the survival and function of our light-sensing cells, called photoreceptors. </p>
<p>One treatment strategy is to deliver the full form of the CEP290 gene using a virus as the delivery vehicle. But the CEP290 gene is too big to be cargo for viruses. So another approach was needed. One strategy was to fix the mutation by using CRISPR.</p>
<p>The scientists at Editas Medicine first showed safety and proof of the concept of the CRISPR strategy in cells extracted from patient skin biopsy and in nonhuman primate animals. </p>
<p>These studies led to the formulation of the <a href="https://ir.editasmedicine.com/news-releases/news-release-details/allergan-and-editas-medicine-announce-dosing-first-patient">first ever in human CRISPR gene therapeutic clinical trial</a>. This Phase 1 and Phase 2 trial will eventually assess the safety and efficacy of the CRISPR therapy in 18 Leber congenital amaurosis Type 10 patients. The patients receive a dose of the therapy while under anesthesia when the retina surgeon uses a scope, needle and syringe to inject the CRISPR enzyme and nucleic acids into the back of the eye near the photoreceptors. </p>
<p>To make sure that the experiment is working and safe for the patients, the clinical trial has recruited people with late-stage disease and no hope of recovering their vision. The doctors are also injecting the CRISPR editing tools into only one eye. </p>
<h2>A new CEP290 gene therapy strategy</h2>
<p>An ongoing project in my laboratory focuses on designing a gene therapy approach for the same gene CEP290. Contrary to the CRISPR approach, which can target only a specific mutation at one time, my team is developing an approach that would work for all CEP290 mutations in Leber congenital amaurosis Type 10. </p>
<p>This approach involves using <a href="https://www.umassmed.edu/khannalab/ciliopathies-blog-and-news/channa-lab-in-the-news/2017/September/study-shows-potential-of-cep290-minigenes-as-therapeutics-for-childhood-blindness-disorder/">shorter yet functional forms of the CEP290 protein</a> that can be delivered to the photoreceptors using the viruses approved for clinical use.</p>
<p>Gene therapy that involves CRISPR promises a permanent fix and a significantly reduced recovery period. A downside of the CRISPR approach is the possibility of an off-target effect in which another region of the cell’s DNA is edited, which could cause undesirable side effects, such as cancer. However, new and improved strategies have made such likelihood very low. </p>
<p>Although the CRISPR study is for a specific mutation in CEP290, I believe the use of CRISPR technology in the body to be exciting and a giant leap. I know this treatment is in an early phase, but it shows clear promise. In my mind, as well as the minds of many other scientists, CRISPR-mediated therapeutic innovation absolutely holds immense promise. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/343289/original/file-20200622-54977-16bxxmw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/343289/original/file-20200622-54977-16bxxmw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/343289/original/file-20200622-54977-16bxxmw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/343289/original/file-20200622-54977-16bxxmw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/343289/original/file-20200622-54977-16bxxmw.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/343289/original/file-20200622-54977-16bxxmw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/343289/original/file-20200622-54977-16bxxmw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/343289/original/file-20200622-54977-16bxxmw.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">An infrared image of a man and a dog. German and Swiss researchers have shown that they can endow living mice with this type of vision.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/thermal-image-of-man-with-dog-royalty-free-image/758300683?adppopup=true">Joseph Giacomin</a></span>
</figcaption>
</figure>
<h2>More ways to tackle blindness</h2>
<p>In another study just reported in the journal Science, German and Swiss scientists have developed <a href="https://doi.org/10.1126/science.aaz5887">a revolutionary technology</a>, which enables mice and human retinas to detect infrared radiation. This ability could be useful for patients suffering from loss of photoreceptors and sight. </p>
<p>The researchers demonstrated this approach, inspired by the ability of snakes and bats to see heat, by endowing mice and postmortem human retinas with a protein that becomes active in response to heat. Infrared light is light emitted by warm objects that is beyond the visible spectrum. </p>
<p>The heat warms a specially engineered gold particle that the researchers introduced into the retina. This particle binds to the protein and helps it convert the heat signal into electrical signals that are then sent to the brain. </p>
<p>In the future, more research is needed to tweak the ability of the infrared sensitive proteins to different wave lengths of light that will also enhance the remaining vision. </p>
<p>This approach is still being tested in animals and in retinal tissue in the lab. But all approaches suggest that it might be possible to either restore, enhance or provide patients with forms of vision used by other species.</p>
<p>[<em>Get our best science, health and technology stories.</em> <a href="https://theconversation.com/us/newsletters/science-editors-picks-71/?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=science-best">Sign up for The Conversation’s science newsletter</a>.]</p><img src="https://counter.theconversation.com/content/133220/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Hemant Khanna receives funding from National Institutes of Health and Iveric Bio. </span></em></p>Strategies to cure various types of blindness are looking more plausible after a series of recent breakthroughs using gene editing and gene therapy.Hemant Khanna, Associate Professor of Ophthalmology, UMass Chan Medical SchoolLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1274162020-05-12T12:34:34Z2020-05-12T12:34:34ZStudy shows how Airbnb hosts discriminate against guests with disabilities as sharing economy remains in ADA gray area<figure><img src="https://images.theconversation.com/files/331877/original/file-20200430-42923-16b343t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Airbnb listings aren't required to comply with the ADA.</span> </figcaption></figure><p>“How could you see my listing if you’re blind?” </p>
<p>“I’d have to check with our insurance company to see if we’re covered to host guests with disabilities.” </p>
<p>“Does the dog drive?”</p>
<p>Those are three typical responses we got from <a href="https://www.airbnb.com/help/article/2503/what-is-airbnb-and-how-does-it-work">Airbnb</a> hosts while posing as guests with disabilities for a <a href="https://www.doi.org/10.5465/amd.2018.0054">study we conducted</a> on the home-sharing service. Some hosts were willing to accommodate us. Some were uneasy. Some were insensitive. We effectively became Airbnb’s secret shopper – even secret to Airbnb – to determine if <a href="https://blog.atairbnb.com/belong-anywhere/">its credo</a> to “belong anywhere” implied that this service was designed with disability access and civil rights in mind. </p>
<p>Our results revealed that Airbnb’s platform perpetuates the social exclusion of people with disabilities. We don’t believe this is done intentionally, but the unregulated nature of rental listings end up subverting the goals of the <a href="https://www.adaanniversary.org/findings_purpose">Americans with Disabilities Act</a>, which turns 30 in July.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=492&fit=crop&dpr=1 600w, https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=492&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=492&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=618&fit=crop&dpr=1 754w, https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=618&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=618&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">President George Bush signed the Americans with Disabilities Act in 1990.</span>
<span class="attribution"><span class="source">AP Photo/Barry Thumma</span></span>
</figcaption>
</figure>
<h2>What the ADA changed</h2>
<p>Before this landmark law, people with disabilities had a very hard time engaging in American life. Structural barriers like buildings without elevators made it difficult to use public transit and limited where people with disabilities could work. They were essentially <a href="https://www.penguinrandomhouse.com/books/164946/no-pity-by-joseph-p-shapiro/">rendered second-class citizens</a>.</p>
<p>For example, people using wheelchairs <a href="https://americanhistory.si.edu/blog/8-ways-which-americans-disabilities-act-changed-everyones-lives">had to abandon</a> them if they needed to ride trains or buses. Grocery stores and other buildings <a href="https://medium.com/@sheribyrnehaber/life-before-the-ada-be8039377942">were usually not accessible</a> to people with disabilities, and restaurants even refused to serve them. Public schools <a href="https://www.washingtonpost.com/posteverything/wp/2015/07/24/why-the-americans-with-disabilities-act-mattered/">excluded an estimated 1 million</a> children with disabilities. And employers could legally avoid hiring someone because of his or her disability – and paid them less than their able-bodied peers with similar qualifications. </p>
<p>This began to change in 1990 with the passage of the ADA, which prohibits disability-based discrimination in all areas of public life. The law makes sure that people with disabilities have the same <a href="https://adata.org/learn-about-ada">rights and opportunities</a> as those without disabilities. Particularly, <a href="https://www.ada.gov/reachingout/title3l1.html">Title III</a> of the ADA covers public accommodations – including private hotels – and requires them to make appropriate changes in policies, practices and procedures, unless this would radically change how businesses operate.</p>
<p>The law, however, was never designed to cover private citizens, such as Airbnb hosts. The recent rise of the largely unregulated sharing economy thus complicates whether the ADA applies to these new types of largely person-to-person transactions. It’s a world in which workers are rarely “employees,” and businesses are often just regular people sharing their apartment with a stranger. </p>
<p>Traditionally, the ADA prohibits businesses like hotels from discriminating against people with disabilities. However, Airbnb is not a normal hospitality company that manages and franchises a collection of hotels and resorts. Instead, it’s a broker between hosts who temporarily sublet their homes and guests who seek affordable and unconventional places to stay. </p>
<p>To that end, listings are not hotels either. And the ADA specifically applies only to places with more than five rooms to rent and are not occupied by the homeowner as a place of residence. These conditions are seldom met on Airbnb. Therefore, many hosts are not legally prohibited from discriminating, which means that guests with disabilities are subject to pre-ADA conditions.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=420&fit=crop&dpr=1 600w, https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=420&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=420&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=528&fit=crop&dpr=1 754w, https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=528&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=528&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Wheelchair protestors demanding easy-access transportation protested in San Francisco, California, in 1978.</span>
<span class="attribution"><span class="source">AP Photo/Sal Veder</span></span>
</figcaption>
</figure>
<h2>Documenting discrimination</h2>
<p>We <a href="https://www.doi.org/10.5465/amd.2018.0054">began our study</a> in June 2016, investigating access to nearly 4,000 Airbnb listings by requesting lodgings with the use of simulated people who had disabilities or were able-bodied. Inconspicuously, across the U.S., we solicited hosts with fake guests who experience blindness, cerebral palsy, spinal cord injury, dwarfism or no disability. The study concluded in November 2016, and we analyzed host responses through early 2017. Following a peer review, we published our findings in February 2019.</p>
<p>Discrimination against our disabled guests was evident. Those without disabilities were offered preapprovals – that is, following an initial inquiry about availability, hosts may make approval automatic once a guest requests a booking – 75% of the time, whereas those with disabilities had a much harder time, depending on the disability. </p>
<p>Those with dwarfism were preapproved 61% of the time, while people with blindness were at 50%. Guests suffering from cerebral palsy were at 43%. And having a spinal cord injury meant a preapproval rate of just 25%. </p>
<p>Overall, the more extreme the disability, like using a wheelchair, the more discrimination our disabled “guests” endured.</p>
<h2>‘How do you drive?’</h2>
<p>Through the process of seeking preapprovals, we engaged with every host in our review, which gave us insights into how they reacted to people with disabilities. </p>
<p>Some hosts were extremely positive and offered assistance. For example, one eagerly explained to our “guest” with a spinal cord injury, “I can carry you and your chair up the stairs… I really want you to stay.” </p>
<p>Another kindly replied to a traveler with dwarfism, “We would be glad to modify anything as needed.” </p>
<p>But some hosts weren’t as accommodating. For example, one expressed concerns over cleaning costs specific to a traveler with blindness who uses a guide dog, “[I]f you’re willing to pay $100 for animal cleaning, I would be OK with you staying.” This was on top of the location’s typical cleaning fee assessed to all guests.</p>
<p>A second was especially disrespectful toward a traveler with blindness by replying, “Um. That’s a new one. How do you drive?” </p>
<p>And while a third was a bit more empathetic, the host was still dismissive toward a traveler with cerebral palsy, blaming an architectural constraint. “Our place has a very narrow and circular stairway, so it would be too difficult for you,” the host said.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Airbnb hosts had mixed responses when guests with disabilities tried to book lodging.</span>
<span class="attribution"><span class="source">Yuriko Nakao/Getty Images</span></span>
</figcaption>
</figure>
<h2>Airbnb’s efforts to fix the problem</h2>
<p>To Airbnb’s credit, it had recognized the problem of disability access in its listing before we began our investigation and began implementing changes during the study. This allowed us to see in real time what kind of impact it had. </p>
<p>The company announced a <a href="https://www.airbnb.com/help/article/1405/airbnbs-nondiscrimination-policy-our-commitment-to-inclusion-and-respect">nondiscrimination policy</a> in November 2016 that explicitly banned using a guest’s disabilities in turning down a requested stay, in addition to other characteristics like race, national origin, religion, sexual orientation and marital status.</p>
<p>However, our study found that compliance didn’t vary after the policy was implemented. </p>
<p>At the time, we felt that this was due to how nascent the policy was. However, as recently as 2019, there have been anecdotes detailing its weak enforcement. Haben Girma, a disability rights lawyer who is deaf and blind, claims <a href="https://techcrunch.com/2019/11/19/how-airbnb-handles-discrimination-claims/">she was denied lodging</a> after disclosing that her service animal would accompany her. </p>
<p>The host defended himself by indicating that his rental was under construction and would be hazardous for any stay, yet the listing was successfully booked by an able-bodied colleague of Girma for the same dates.</p>
<p>Soon after our study, in late 2017, <a href="https://techcrunch.com/2017/11/16/airbnb-buys-accomable-a-specialist-in-travel-listings-for-disabled-people/">Airbnb purchased Accomable</a>, a travel website focused on those with disabilities. This acquisition helped Airbnb improve its search filter by allowing hosts to list <a href="https://www.airbnb.com/help/article/1961/how-do-i-add-accessibility-features-to-my-listing">accessibility features more precisely</a>.</p>
<p>It remains to be seen how effective this has been, though some guests <a href="https://www.wired.co.uk/article/airbnb-booking-accessibility-wheelchair-hosts">have found the accessibility filters to be inaccurate</a>.</p>
<h2>Time for an ADA update</h2>
<p>The ADA <a href="https://www.adaanniversary.org/findings_purpose">emerged</a> from a long history of frustration of how people with disabilities were marginalized in the areas of employment and more. </p>
<p>Now, as the sharing economy continues to expand, we believe the law should be amended to specifically protect people from disability-based discrimination on these online platforms. While it would not be realistic or sensible to force every mom-and-pop listing on Airbnb to become ADA-compliant, there must be ways to ensure that when guests without disabilities have access to listings, those with disabilities can have access to similar ones at the same cost.</p>
<p>As the ADA approaches its 30th anniversary, this is an opportunity for legislators, disability rights activists, Airbnb, as well as its users to collectively and proactively ensure equal access for everyone.</p>
<p>[<em>Insight, in your inbox each day.</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=insight">You can get it with The Conversation’s email newsletter</a>.]</p><img src="https://counter.theconversation.com/content/127416/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Airbnb’s platform perpetuates the social exclusion of people with disabilities, while the 30-year-old ADA doesn’t apply to the sharing economy.Mason Ameri, Assistant Professor of Professional Practice, Rutgers University - NewarkDouglas L. Kruse, Distinguished Professor, Rutgers UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1369912020-04-29T10:17:09Z2020-04-29T10:17:09ZWhat coronavirus crisis means for blind and partially sighted people<figure><img src="https://images.theconversation.com/files/331330/original/file-20200429-51495-1r4341c.jpg?ixlib=rb-1.1.0&rect=8%2C0%2C5455%2C3645&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/blind-woman-walking-stairs-alone-white-648689122">Akemaster/Shutterstock</a></span></figcaption></figure><p>If a well-meaning neighbour offered to do your lockdown shopping, would you be brave enough to ask for a bottle of sherry and a bag of cheese and onion crisps? Visually impaired campaigner Anna Tylor did just that, <a href="https://theblindtruth.co.uk/2020/04/06/my-blind-corona-shop/">as she describes wryly on her blog</a>.</p>
<p>Anna was struggling to get her usual supermarket delivery slot as blind and partially sighted people in the UK are not classified as <a href="https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19">“clinically extremely vulnerable”</a> so are not automatically entitled to food parcels, priority supermarket deliveries or help with basic care needs.</p>
<p>Aside from diabetes, the commonest causes of visual impairment in Europe are age-related macular disease, inherited retinal diseases, and glaucoma. These conditions affect only the eyes and do not cause greater susceptibility to COVID-19 or any other communicable disease. But consider the challenges faced by a visually impaired person going to a supermarket during lockdown.</p>
<h2>New challenges</h2>
<p>Most people registered as sight impaired have some vision. With magnifiers or high powered glasses they can often read price labels and packet descriptions – but only from a couple of centimetres. Many use smartphone apps to read printed text aloud, or barcode scanners to identify products. Braille readers need to touch packets to read labels. </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/331331/original/file-20200429-51513-1pwsbot.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/331331/original/file-20200429-51513-1pwsbot.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=900&fit=crop&dpr=1 600w, https://images.theconversation.com/files/331331/original/file-20200429-51513-1pwsbot.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=900&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/331331/original/file-20200429-51513-1pwsbot.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=900&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/331331/original/file-20200429-51513-1pwsbot.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1131&fit=crop&dpr=1 754w, https://images.theconversation.com/files/331331/original/file-20200429-51513-1pwsbot.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1131&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/331331/original/file-20200429-51513-1pwsbot.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1131&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Reading braille on packaging requires touching objects when shopping.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/shopper-reading-braille-on-blind-friendly-694625218">ThamKC/Shutterstock</a></span>
</figcaption>
</figure>
<p>These techniques maintain independence in normal times. Now, though, many visually impaired people are concerned by having to touch multiple items, moving them closer to their eyes, and spending longer in a potentially virus-laden environment. </p>
<p>Supermarkets usually allow a staff member to accompany a visually impaired person around the shop. Now, though, this would mean spending more time in close contact with a potential asymptomatic carrier. Social distancing is even more difficult for people with reduced hearing as well as bad eyesight. It is far harder to hear someone from two metres away than from 50 cm, and there are worrying reports of tactile interpreters for deafblind people not being available <a href="https://www.newstatesman.com/science-tech/coronavirus/2020/04/isolation-covid-19-coronavirus-lockdown-disabled-ill-elderly">in healthcare settings</a>.</p>
<p>Kelly Carver, a man in his 50s who has progressively lost vision due to retinitis pigmentosa, told me about social distancing with a white cane.</p>
<blockquote>
<p>I guess as a low vision person, I have the right of way and people need to heed the 6ft distance from me. Still, that’s not particularly comforting. I don’t want to foist that upon others.</p>
</blockquote>
<p>At home, people who can’t see well and live alone face challenges in reading use-by dates, checking cooking instructions on a food packet, or making sure they’re taking the right dose of medication. </p>
<p>Those with tech skills and good internet connections might use video-calling, artificial intelligence apps such as <a href="https://www.microsoft.com/en-us/ai/seeing-ai">Seeing AI</a> or crowdsourced assistance like <a href="https://www.bemyeyes.com/">BeMyEyes</a>. Inclusive design means new technology has been <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/opo.12136">widely adopted</a> by people with visual impairment. However, people without these devices might rely on volunteers from sight loss charities, many of which are no longer offering home visits.</p>
<h2>Sending the wrong signal</h2>
<p>But some people with visual impairment don’t want to have special dispensations made for them. A fit and healthy 21-year old woman who happens to have poor vision may not want to be included on a list of the most vulnerable people in the country. </p>
<p>When only one in four blind or partially sighted people is in employment, and nearly 40% of visually impaired graduates are <a href="https://www.rnib.org.uk/knowledge-and-research-hub-research-reports/employment-research/labour-force-survey-2015">out of work</a>, classifying people who don’t see well as being in need of more support might send the wrong signal to employers and wider society. </p>
<p>Anna Tylor is worried about the competing needs of people at high clinical risk from Covid-19 and those vulnerable from sight loss: </p>
<blockquote>
<p>I’m horrified that disabled people have been displaced by “vulnerable groups”, thus creating a two tier vulnerable system.</p>
</blockquote>
<p>Some help is available. If people with visual impairment can get through on the phone to their supermarket they can ask to be put onto a priority delivery list. Staff in shops will still help on request, usually separated by the length of a trolley. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/331336/original/file-20200429-51457-1gcbd90.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/331336/original/file-20200429-51457-1gcbd90.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/331336/original/file-20200429-51457-1gcbd90.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/331336/original/file-20200429-51457-1gcbd90.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/331336/original/file-20200429-51457-1gcbd90.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/331336/original/file-20200429-51457-1gcbd90.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/331336/original/file-20200429-51457-1gcbd90.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Social distancing presents extra challenges for those with visual impairments.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/guidedog-helping-blind-man-city-motion-1176616186">blurAZ/Shutterstock</a></span>
</figcaption>
</figure>
<p>The <a href="https://www.londoncouncils.gov.uk/press-release/02-april-2020/covid-19-%E2%80%93-taxicard-changes">London Taxicard scheme</a> has been extended to pick up and deliver essential supplies. Neighbours, communities and mutual aid groups will help with essential shopping and safe social contact.</p>
<p>How can you best help someone with visual impairment during lockdown? <a href="https://twitter.com/search?q=%23askdontgrab&src=typed_query">#AskDontGrab</a>, as blind Twitter users emphasise. Give people distance if you think they’re struggling to see you. Don’t shout at people who accidentally encroach on your space. Announce who you are, and tell people when you’re leaving so they don’t end up speaking into thin air.</p><img src="https://counter.theconversation.com/content/136991/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michael Crossland does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>How do you maintain social distancing when you can’t see?Michael Crossland, Senior Optometrist, Moorfields Eye Hospital NHS Foundation Trust & Honorary Senior Research Associate, UCLLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1357142020-04-21T13:34:42Z2020-04-21T13:34:42ZHow African genetic studies offer hope for preventing a common cause of blindness<figure><img src="https://images.theconversation.com/files/328064/original/file-20200415-153318-a47uyg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A man being tested as he takes part in an ophthalmological study and examination.</span> <span class="attribution"><span class="source">Tony Karumba/AFP via Getty Images</span></span></figcaption></figure><p>Glaucoma is the <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31469-1/fulltext">most common</a> cause of irreversible blindness in the world. It’s estimated that by 2040 there will be about <a href="https://www.aaojournal.org/article/S0161-6420(14)00433-3/fulltext">112 million people</a> in the world with glaucoma – mostly in Africa and Asia. The best that medical science can do at present is identify it early and slow or halt its progression.</p>
<p>The disease affects the optic nerve, which normally sends signals from the eye to the brain. With glaucoma, this nerve doesn’t work properly. The first sign is loss of peripheral vision. This gradually progresses to tunnel vision and, ultimately, blindness. </p>
<p>The most important risk factor for developing glaucoma is having high pressure inside the eyeball. Reducing this pressure is currently the only way to treat glaucoma. It’s done with eye drops, laser treatment or surgery. </p>
<p>The most common type of glaucoma is primary open-angle glaucoma, which typically begins in middle to older age. Visual loss is only noticeable at an advanced stage of the disease. It’s more common in populations of <a href="https://www.aaojournal.org/article/S0161-6420(14)00433-3/fulltext">African descent</a> than in those with European or Asian ancestry. In African populations it starts at an earlier age and progresses faster. The prevalence of primary open-angle glaucoma in Africans between the ages of 40 and 80 is about <a href="https://www.aaojournal.org/article/S0161-6420(14)00433-3/fulltext">4.2%</a>.</p>
<p>The cause and mechanisms underlying this condition are poorly understood. But it’s known that family members of affected individuals are much <a href="https://jamanetwork.com/journals/jamaophthalmology/article-abstract/640514">more likely</a> to get the disease. We <a href="https://jamanetwork.com/journals/jama/article-abstract/2753899">conducted a study</a> to identify genetic risk factors for primary open-angle glaucoma in African populations. </p>
<p>Identifying glaucoma associated genetic factors could make it easier to identify patients at risk before they develop the disease. It could also shed light on the cause and unlock new treatments. </p>
<p>We found a new genetic association that may help us achieve these goals.</p>
<h2>Existing knowledge and gaps</h2>
<p>Most primary open-angle glaucoma is inherited in a complex manner. In other words there is not just one mutation in a single gene that is sufficient to cause the disease. Rather there are small variations in several genes that contribute to an increase in risk for the disease.</p>
<p>Genetic risk factors have been identified using <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171270/">association studies</a>. In these studies thousands of affected individuals are compared with even larger numbers of unaffected individuals. This identifies associations between certain genes and either glaucoma or characteristics associated with glaucoma (like high pressure inside the eye). Each association provides information about the diseases. </p>
<p>Most of these studies have been performed on European populations. Genetic enquiry in African populations is challenging because there is so much more diversity within African genomes. </p>
<p>The genome is the complete set of genetic material we carry in all the cells of our bodies. Genes are the parts of the genome that contain instructions to make proteins. All humans’ genomes are almost identical but tiny variations occur. It is these “variants” that determine our individuality. The more ancient a population, the more time there has been for “variants” to develop and the more <a href="https://www.nature.com/articles/nature08795">genetic diversity</a> there will be in that population. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-weve-learnt-from-building-africas-biggest-genome-library-126293">What we've learnt from building Africa's biggest genome library</a>
</strong>
</em>
</p>
<hr>
<p>This diversity means that African populations are valuable in studies of the links between genes and diseases like glaucoma. </p>
<h2>We found new associations</h2>
<p>Our group of researchers (the Genetics of Glaucoma in People of African Descent Consortium) <a href="https://jamanetwork.com/journals/jama/article-abstract/2753899">recently published</a> an association study of close to 10,000 primary open-angle glaucoma patients of African descent. </p>
<p>We identified a new association, with a gene called APBB2. It occurs in all populations but the variant associated with glaucoma was only found in Africans. </p>
<p>We demonstrated that this genetic variant results in increased amyloid deposition in both the eye and the part of the brain responsible for vision. Amyloid is a protein that is toxic to brain tissue and is associated with <a href="https://www.nia.nih.gov/health/what-happens-brain-alzheimers-disease">Alzheimer-type and related dementias</a>. We can’t yet say for certain that amyloid depositions cause glaucoma, but this seems likely. If further studies can prove this, then drugs that were developed to treat dementias might be useful to treat primary open-angle glaucoma.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/alzheimers-the-switch-on-moment-discovered-131810">Alzheimer's: the 'switch-on moment' discovered</a>
</strong>
</em>
</p>
<hr>
<p>There is no evidence that glaucoma occurs more frequently in individuals with dementia or vice versa. But this study found a genetic link that could help explain how the optic nerve is damaged in glaucoma. </p>
<p>We recently confirmed this direct genetic link in a <a href="https://www.biorxiv.org/content/10.1101/2020.01.30.927822v1">large analysis</a> of data from different studies all over the world. The analysis identified another three genes that are known to cause Alzheimer-type dementias and are also associated with primary open-angle glaucoma. </p>
<h2>How this could change management of glaucoma</h2>
<p>Discovering the genetic associations of an inherited disease is an important step. It identifies biological pathways that may cause the disease. </p>
<p>In a complex condition like primary open-angle glaucoma, it is likely that there are several different pathways involved which all end up with damage to the optic nerve. Only by studying multiple populations will a true picture of all the genetic associations emerge. There may already be treatments available that target the biological functions of these associated genes which could then be used to treat glaucoma. Alternatively, new treatments targeting these functions could be developed specifically for glaucoma. </p>
<p>Knowing about genetic associations in specific populations will make it possible to focus prevention and treatment on those who will benefit most, sparing expense and side effects from those who will not. </p>
<p>Ultimately genetics could pave the way for precision medicine in glaucoma: tailoring care to the individual patient.</p><img src="https://counter.theconversation.com/content/135714/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Susan Williams receives funding from the Carnegie Corporation of New York (Carnegie Clinician Scientist Post-Doctoral Fellowship).</span></em></p>Knowing genetic associations in specific populations will make it possible to focus prevention and treatment on those who will benefit most, sparing expense and side effects from those who will not.Susan Williams, Lecturer in Ophthalmology, University of the WitwatersrandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1223222020-02-05T04:05:06Z2020-02-05T04:05:06ZWhat is Charles Bonnet syndrome, the eye condition that causes hallucinations?<figure><img src="https://images.theconversation.com/files/313643/original/file-20200205-149772-7wauc8.jpg?ixlib=rb-1.1.0&rect=23%2C11%2C7796%2C4760&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">From shutterstock.com</span></span></figcaption></figure><p>Visual hallucinations, or seeing things that aren’t really there, can be frightening and distressing.</p>
<p>They may occur due to a large variety of physical and psychiatric conditions. But a lesser known cause is Charles Bonnet syndrome (pronounced <em>bo-nay</em>), named after the <a href="https://www.britannica.com/biography/Charles-Bonnet">Swiss scientist</a> who first described the condition in 1760.</p>
<p>Charles Bonnet syndrome (also called visual release hallucinations) refers to visual hallucinations in patients with severe vision loss due to eye, optic nerve or brain disease.</p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/311741/original/file-20200124-81341-jdmhd8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/311741/original/file-20200124-81341-jdmhd8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=739&fit=crop&dpr=1 600w, https://images.theconversation.com/files/311741/original/file-20200124-81341-jdmhd8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=739&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/311741/original/file-20200124-81341-jdmhd8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=739&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/311741/original/file-20200124-81341-jdmhd8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=929&fit=crop&dpr=1 754w, https://images.theconversation.com/files/311741/original/file-20200124-81341-jdmhd8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=929&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/311741/original/file-20200124-81341-jdmhd8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=929&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The syndrome is named after Swiss scientist Charles Bonnet.</span>
<span class="attribution"><span class="source">Wikimedia commons</span></span>
</figcaption>
</figure>
<p>We don’t know the exact cause of Charles Bonnet syndrome. But the most commonly accepted theory is the loss of visual sensory signals to the brain (for example, when a person becomes blind) means the brain cannot put the brakes on <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/j.1479-8301.2009.00288.x">excessive and unwanted brain activity</a>.</p>
<p>This leads the part of the brain responsible for the sensation of vision (the visual cortex) to fire signals inappropriately. The person in turn perceives they are seeing something in the absence of a true stimulus – a visual hallucination.</p>
<p>If these symptoms are affecting you, a friend or family member who has become blind in one or both eyes, it’s important to understand it’s not a sign of “going mad”.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/curious-kids-how-do-glasses-help-you-see-84363">Curious Kids: How do glasses help you see?</a>
</strong>
</em>
</p>
<hr>
<h2>What are Charles Bonnet hallucinations like?</h2>
<p>The hallucinations may be “simple” (such as lines, shapes, or flashes of light) or “complex” (such as formed images of animals, like butterflies). Simple hallucinations are much more common.</p>
<p>They may occur for seconds or minutes to hours or continuously, and the <a href="https://www.ncbi.nlm.nih.gov/pubmed/9091601">frequency ranges</a> from isolated episodes to multiple times a day. It’s normal for Charles Bonnet syndrome to <a href="https://pubmed.ncbi.nlm.nih.gov/24825847-negative-outcome-charles-bonnet-syndrome/?from_term=Cox+TM&from_cauthor_id=24825847&from_pos=1">last for years</a>; some people will experience symptoms for the rest of their lives.</p>
<p>The nature of Charles Bonnet hallucinations is highly variable. That is, people who are affected often don’t see the same thing repeatedly, and one person with Charles Bonnet syndrome will see different things from the next person.</p>
<p>Charles Bonnet hallucinations often have little or no emotional meaning, allowing affected people to <a href="https://www.ncbi.nlm.nih.gov/pubmed/8622335">recognise they are not real</a>. This is distinct from hallucinations associated with mental illness.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-what-is-age-related-macular-degeneration-59889">Explainer: what is age-related macular degeneration?</a>
</strong>
</em>
</p>
<hr>
<p>Other features of visual hallucinations unique to Charles Bonnet syndrome include:</p>
<ul>
<li><p>hallucinations only appear in the areas where vision is lost (for example, a person who is blind in their left eye will perceive hallucinations only in that eye)</p></li>
<li><p>hallucinations are more frequently seen with the <a href="https://www.ncbi.nlm.nih.gov/pubmed/8622335">eyes open than closed</a>, and may disappear when the person closes their eyes or looks away</p></li>
<li><p>hallucinations are more common in settings of <a href="https://www.ncbi.nlm.nih.gov/pubmed/8622335">sensory deprivation</a> (for example, at night time or in dim lighting, or during periods of inactivity).</p></li>
</ul>
<h2>Who is affected?</h2>
<p>Most people with Charles Bonnet syndrome are <a href="https://www.ncbi.nlm.nih.gov/pubmed/18983551">older adults</a> (usually over 70). This is probably because vision loss is most common in this age group. But any person of any age with acquired vision loss can develop Charles Bonnet syndrome.</p>
<p>The causes of blindness that lead to Charles Bonnet syndrome are usually macular degeneration, glaucoma, <a href="https://www.hollows.org/au/eye-health/diabetic-retinopathy?gclid=Cj0KCQiA2vjuBRCqARIsAJL5a-JKWwv0VqzUfB0BH7XZVpJzIKDMYh_5kfXTuPe13_CGEjkAd4OlnXAaAhV5EALw_wcB&gclsrc=aw.ds">diabetes</a>, <a href="https://www.visionaustralia.org/information/eye-conditions/stroke?utm_source=google&utm_medium=cpc&gclid=Cj0KCQiA2vjuBRCqARIsAJL5a-JO8Ty6cKPi-X8IkE7mWs90kZtUbz4UvwbewgvMyqgXYyybMfFTvVEaAp-pEALw_wcB">stroke</a> and injury – but any disease that leads to blindness may cause Charles Bonnet syndrome.</p>
<p>The syndrome does not occur in congenital blindness (people born blind from birth). </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/311743/original/file-20200124-81369-1sffd3q.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/311743/original/file-20200124-81369-1sffd3q.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/311743/original/file-20200124-81369-1sffd3q.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/311743/original/file-20200124-81369-1sffd3q.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/311743/original/file-20200124-81369-1sffd3q.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/311743/original/file-20200124-81369-1sffd3q.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/311743/original/file-20200124-81369-1sffd3q.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Charles Bonnet syndrome is most common in older people, but can present in anyone with acquired vision loss.</span>
<span class="attribution"><span class="source">From shutterstock.com</span></span>
</figcaption>
</figure>
<p>We currently have no conclusive data on how many Australians have Charles Bonnet syndrome, although <a href="https://www.ncbi.nlm.nih.gov/pubmed/18983551">one study</a> estimated more than 17% of people aged over 60 with impaired vision had it. In <a href="https://www.ncbi.nlm.nih.gov/pubmed/2314586">another study</a>, as many as 57% of participants with vision loss reported perceived visual hallucinations.</p>
<p>Importantly, it may be more common than estimated because of lack of reporting. That is, people who are affected may not report their hallucinations due to fear of psychiatric disease or of being perceived to be “going mad”.</p>
<p>Further, people who do report their symptoms may be <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3555593/">misdiagnosed</a> with psychosis or dementia.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-what-is-glaucoma-the-sneak-thief-of-sight-64807">Explainer: what is glaucoma, the 'sneak thief' of sight?</a>
</strong>
</em>
</p>
<hr>
<h2>Treatment options are limited</h2>
<p>Seeing a general practitioner (often in conjunction with a neurologist and/or geriatrician) is an important first step to exclude other causes of hallucinations. These could include dementia, physical neurological conditions (for example, a brain tumour), epilepsy and delirium due to infections or medications. Your doctor may order blood tests and/or brain imaging to rule these out.</p>
<p>Treatment for Charles Bonnet syndrome is very limited, but <a href="https://www.ncbi.nlm.nih.gov/pubmed/11711837">many patients report</a> reassurance is all they need, especially for infrequent hallucinations or those that don’t adversely affect quality of life. </p>
<p>Strategies to minimise the frequency and duration of hallucinations include frequent blinking or rapid eye movement, going to a lighter place or switching a light on, and increasing social interaction, which helps to counter inactivity.</p>
<p>For patients with debilitating symptoms, doctors may trial medications such as <a href="https://www.ncbi.nlm.nih.gov/pubmed/23676430">antidepressants</a>, <a href="https://www.ncbi.nlm.nih.gov/pubmed/23037678">antipsychotics</a> and <a href="https://www.ncbi.nlm.nih.gov/pubmed/27485168">antiepileptic drugs</a>, though their efficacy is variable and may be outweighed by side effects.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/scientists-have-found-how-to-make-people-hallucinate-and-how-to-measure-what-they-see-66842">Scientists have found how to make people hallucinate, and how to measure what they see</a>
</strong>
</em>
</p>
<hr>
<p>Hallucinations may disappear if the cause of vision loss can be corrected (for example, if severe cataracts were causing blindness and the patient has a cataracts operation).</p>
<p>Unfortunately though, generally the causes of vision loss that lead to Charles Bonnet syndrome can’t be treated.</p><img src="https://counter.theconversation.com/content/122322/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jason Yosar does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Charles Bonnet syndrome refers to visual hallucinations in people with acquired vision loss, and symptoms can last for many years.Jason Yosar, Associate Lecturer, School of Medicine, The University of QueenslandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1255672019-11-27T18:42:07Z2019-11-27T18:42:07ZCurious Kids: how do guide dogs know where their owners want to go?<figure><img src="https://images.theconversation.com/files/301671/original/file-20191113-77305-12021m5.jpg?ixlib=rb-1.1.0&rect=0%2C24%2C5511%2C3644&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A lot of people may think a guide dog tells a person when they can cross the road. But this is not actually true.</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><hr>
<blockquote>
<p><strong>How do guide dogs know where their owners want to go? – Mia, age 6.</strong></p>
</blockquote>
<hr>
<p><a href="https://theconversation.com/au/topics/curious-kids-36782"><img src="https://images.theconversation.com/files/291898/original/file-20190911-190031-enlxbk.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=90&fit=crop&dpr=1" width="100%"></a></p>
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<p>Mia, thank you for your question. I know a bit about this topic because I have some experience training and using an assistance dog myself. Also, as part of my job teaching at a university, I’m working with a number of students doing research projects on assistance dogs.</p>
<p>The answer to your great question is actually quite simple. Guide dogs, which are assistance dogs for people who are blind or vision impaired, know where to go because they practise.</p>
<p>Practice makes perfect – just like how you might learn to walk from home to school, or how adults know how to drive to different places without getting lost.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/curious-kids-is-it-true-dogs-dont-like-to-travel-108670">Curious Kids: is it true dogs don't like to travel?</a>
</strong>
</em>
</p>
<hr>
<p>As part of their training a guide dog will practise getting around to some of the most common places the person they will guide needs to go. This may include the shops near their home, or from their home to the bus stop.</p>
<p>So, in simple terms, guide dogs only know how to get to and from familiar places they have practised the routes for.</p>
<p>What most people don’t realise, though, is the person the dog is guiding still needs to know where they are going too.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/303362/original/file-20191125-74593-1h3o94l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/303362/original/file-20191125-74593-1h3o94l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=435&fit=crop&dpr=1 600w, https://images.theconversation.com/files/303362/original/file-20191125-74593-1h3o94l.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=435&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/303362/original/file-20191125-74593-1h3o94l.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=435&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/303362/original/file-20191125-74593-1h3o94l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=546&fit=crop&dpr=1 754w, https://images.theconversation.com/files/303362/original/file-20191125-74593-1h3o94l.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=546&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/303362/original/file-20191125-74593-1h3o94l.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=546&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Just like people train for their jobs, dogs have to do special training to become guide dogs.</span>
<span class="attribution"><span class="source">From shutterstock.com</span></span>
</figcaption>
</figure>
<h2>Identifying obstacles</h2>
<p>There is a lot of training a guide dog will do before they are taught familiar places. This is because making sure they guide a person safely is much more than knowing where to go.</p>
<p>Say you are walking to school and the branch of a tree has fallen across the path you normally walk on. </p>
<p>If that branch was small you might just step over it. If it is big you might go around it or even cross to the other side of the road.</p>
<p>Since a blind person may not be able to see the branch, it’s up to their guide dog to let them know it is there. How they do this will depend on how big the branch is.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/curious-kids-why-do-pets-have-dark-eyes-while-humans-have-mostly-white-eyes-115391">Curious Kids: why do pets have dark eyes while humans have mostly white eyes?</a>
</strong>
</em>
</p>
<hr>
<p>If it is small the dog may help safely guide the person around it. If it is large and they can’t get around easily, they will block the person so they know there is something in the way. </p>
<p>It is then up to the person to work with their dog to help them safely find a way past the branch.</p>
<p>This means a big part of being a guide dog is letting the person they are guiding know when there is an obstacle in their way.</p>
<p>To a blind person an obstacle can include things like the step down off the path onto the road, or a step up into a shop. These are things you probably don’t even think of as an obstacle when walking.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/0tmKy2awfxE?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Training and team work are key for a guide dog and their human partners.</span></figcaption>
</figure>
<h2>Working as a team</h2>
<p>A lot of people may think a guide dog tells a person when they can cross a road. But this is not actually true.</p>
<p>The dog will block the person from stepping onto the road to let them then know they have reached the end of the path.</p>
<p>It is then up to the person to listen to their surrounds and decide if it is safe to cross the road.</p>
<p>It is the person who tells the dog it is safe to cross the road – not the other way around.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/curious-kids-why-dont-dogs-live-as-long-as-humans-93374">Curious Kids: Why don't dogs live as long as humans?</a>
</strong>
</em>
</p>
<hr>
<p><em>Hello, curious kids! Have you got a question you’d like an expert to answer? Ask an adult to send your question to curiouskids@theconversation.edu.au</em></p><img src="https://counter.theconversation.com/content/125567/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Carmel Nottle is affiliated with Animal Therapies Limited. </span></em></p>As part of their training, a guide dog will practise getting around some of the most common places the person they will guide needs to go.Carmel Nottle, Lecturer - Human Movement / Clinical Exercise Physiology, University of South AustraliaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1242622019-10-16T21:57:59Z2019-10-16T21:57:59ZThe blind and visually impaired can help researchers by getting their genes tested<figure><img src="https://images.theconversation.com/files/297399/original/file-20191016-98666-1lztb57.jpg?ixlib=rb-1.1.0&rect=73%2C154%2C4691%2C2906&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Gene therapy trials may mean that the next generation of children born with inherited eye diseases have treatment options.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Blind and partially sighted people no longer have to wait passively for a research breakthrough in hope of treatment options. In fact, people living with genetic eye conditions can now actively drive vision research forward — by enrolling in a patient registry and getting their genes tested.</p>
<p>There are <a href="https://www.who.int/news-room/fact-sheets/detail/blindness-and-visual-impairment#targetText=Globally%2C%20it%20is%20estimated%20that,people%20are%20blind%20(1).">2.2 billion people living with visual impairment globally</a>. Some are living with inherited retinal diseases that are progressive and can lead to complete blindness. Up until recent years, blind and visually impaired people were told that no treatment is available. This is changing as <a href="https://doi.org/10.2174/1566523217666171116170040">genetic testing is paving the way for a surge of gene therapies</a>.</p>
<h2>My passion for vision research is personal</h2>
<p>My <a href="https://doi.org/10.1523/JNEUROSCI.1647-16.2016">doctoral dissertation</a> at the University of British Columbia was on drug therapy for <a href="https://doi.org/10.1016/S0140-6736(06)69740-7">retinitis pigmentosa</a>. This progressive, blinding eye condition is the most common type of inherited retinal disease. </p>
<p>In people affected by retinitis pigmentosa, the light sensing cells in their retina — photoreceptors — die early. Unlike skin cells that regenerate, the body does not make more photoreceptors once they are damaged.</p>
<p>As a vision scientist affected by retinitis pigmentosa, I am passionate about finding the truth about the disease. Why do photoreceptors die? How can we stop it? How can science and medicine help?</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/297405/original/file-20191016-98657-6y043a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/297405/original/file-20191016-98657-6y043a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=371&fit=crop&dpr=1 600w, https://images.theconversation.com/files/297405/original/file-20191016-98657-6y043a.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=371&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/297405/original/file-20191016-98657-6y043a.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=371&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/297405/original/file-20191016-98657-6y043a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=466&fit=crop&dpr=1 754w, https://images.theconversation.com/files/297405/original/file-20191016-98657-6y043a.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=466&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/297405/original/file-20191016-98657-6y043a.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=466&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Retinitis pigmentosa causes the light sensing cells, or photoreceptors, in a retina to die early.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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</figure>
<p>When I was 12 years old, I realized while at summer camp that my night vision was disappearing. In the last two decades, I lost my peripheral vision, contrast sensitivity and depth perception.</p>
<p>I worked in <a href="http://moritzlab.ophthalmology.ubc.ca/">Dr. Orson Moritz’s lab</a> at the UBC department of ophthalmology and visual sciences, which focuses on research using tadpoles that contain known human mutations for retinitis pigmentosa to understand the disease. </p>
<p><a href="https://www.iheart.com/podcast/269-eyes-on-success-rad-29372511/episode/1734-retinitis-pigmentosa-research-aug-16-29372697/">I made an alarming discovery in our animal model</a>: knowing the genetic cause of retinitis pigmentosa is <a href="https://www.jneurosci.org/content/37/4/1039">vital for treatment with one class of drugs — histone deacetylase inhibitors</a>. These determine how genes are switched “on” or “off.”</p>
<p>A similar <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4225157/">study in mice</a> showed that the same drug reacted differently to variations in a single mutant gene that also causes retinitis pigmentosa.</p>
<p>Treating retinitis pigmentosa is like extinguishing fire. To stop a fire, you need to know whether it’s water-based or grease-based. If you try to use water to stop a grease fire, the damage gets worse.</p>
<h2>Enrol in a patient registry</h2>
<p>Blind and visually impaired people can advocate for eye health by enrolling in a patient registry. Participation in a registry <a href="https://doi.org/10.1371/journal.pone.0220983">benefits researchers by offering more information</a> about the disease.</p>
<p>In Canada, individuals can self-refer to <a href="https://www.fightingblindness.ca/">Fighting Blindness Canada’s</a> secure, clinical <a href="https://www.fightingblindness.ca/patient-registry/">patient registry</a>. This database is dedicated to connecting people living with retinal eye diseases to clinical trials and research.</p>
<p>When a gene therapy trial arises, researchers draw participants from this database. Since <a href="https://doi.org/10.2174/1566523217666171116170040">gene therapy aims to correct an underlying genetic mistake in DNA that causes disease</a>, knowing the genetic cause of a disease is a criteria for most gene therapy trials.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"897651303010140160"}"></div></p>
<p>Globally, other registries include <a href="https://www.fightingblindness.org/my-retina-tracker">My Retina Tracker</a> in the United States, <a href="https://www.fightingblindness.ie/how-we-can-help/research/target-5000s/">Target 5000</a> in Ireland, <a href="https://myeyesite.org.uk/">MyEyeSite</a> in the United Kingdom, the <a href="https://www.scgh.health.wa.gov.au/Research/DNA-Bank">Australian Inherited Retinal Disease Registry</a> and <a href="http://jegc.org/">Japan Eye Genetics Consortium</a>. In New Zealand, <a href="https://unidirectory.auckland.ac.nz/profile/a-vincent">Dr. Andrea Vincent</a> has established the Genetic Eye Disease Investigation Unit. There is even a <a href="https://www.bcmregistry.org/">Blue Cone Monochromacy Patient Registry</a> for one rare eye condition.</p>
<h2>Blossoming gene therapy trials</h2>
<p>In the last two decades, the number of gene therapy trials has blossomed. Currently, <a href="https://sph.uth.edu/retnet/">250 genes on inherited retinal diseases have been identified</a>. In <a href="http://ir.sparktx.com/news-releases/news-release-details/european-commission-approves-spark-therapeutics-luxturnar#targetText=LUXTURNA%20was%20approved%20by%20the,(%20FDA%20)%20in%20December%202017%20.">2017, the first gene therapy for inherited retinal disease</a> — Luxturna — was <a href="https://www.fda.gov/vaccines-blood-biologics/cellular-gene-therapy-products/luxturna">approved by the United States Federal Drug Administration</a>.</p>
<p>To date, there are trials for: <a href="https://www.clinicaltrials.gov/ct2/results?term=gene+therapy&cond=retinitis+pigmentosa&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=">retinitis pigmentosa</a>; <a href="https://clinicaltrials.gov/ct2/results?term=Gene+Therapy&cond=Usher&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=">Usher syndrome</a>, a condition that involves hearing and vision loss;
<a href="https://www.clinicaltrials.gov/ct2/results?term=gene+therapy&cond=Achromatopsia&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=">achromatopsia</a>, a disease that causes colour blindness; <a href="https://www.clinicaltrials.gov/ct2/results?term=Gene+Therapy&recrs=ab&cond=X-linked+Retinoschisis&rank=1#rowId0%22%22">X-linked retinoschisis</a>, a dystrophy that causes splitting of the retina and affects mostly in males; and <a href="https://www.clinicaltrials.gov/ct2/results?term=gene+therapy&cond=Age+Related+Macular+Degeneration&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=">age-related macular degeneration</a>, the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2623053/">third-largest cause of vision loss worldwide</a>, caused by the interplay between <a href="https://doi.org/10.1146/annurev-genom-090413-025610">genetics and environment</a>.</p>
<p>Enrolment in a patient registry and genetic testing advance the design of gene therapy trials. This in turn benefits blind and visually impaired people. </p>
<p>Research advancement is a concerted effort across the globe — blind and partially sighted people should know they have the power to push it forward.</p>
<p>[ <em>Like what you’ve read? Want more?</em> <a href="https://theconversation.com/ca/newsletters?utm_source=TCCA&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=likethis">Sign up for The Conversation’s daily newsletter</a>. ]</p><img src="https://counter.theconversation.com/content/124262/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ruanne Vent-Schmidt's doctoral research project was funded by Fighting Blindness Canada.
Ruanne Vent-Schmidt is the Specialist in Peer Support, Advocacy and Research Communications at the Canadian National Institute for the Blind.</span></em></p>Gene therapy trials for inherited retinal diseases are blossoming. Blind and partially sighted people are helping to advance the research.Ruanne Lai, PhD Candidate, Cell & Developmental Biology, University of British ColumbiaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1249772019-10-14T13:12:47Z2019-10-14T13:12:47ZBlind people have increased opportunities, but employers’ perceptions are still a barrier<figure><img src="https://images.theconversation.com/files/296707/original/file-20191011-96226-ind0vz.jpg?ixlib=rb-1.1.0&rect=24%2C85%2C4050%2C2645&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A woman walking with a white cane, which has become a symbol of independence for people who are blind. </span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/blind-woman-walking-on-sidewalk-573873037?src=UPXa4aOHzYpYqrDF8bxvSQ-1-39">Akemaster/Shutterstock.com</a></span></figcaption></figure><p>Communities across the world observe <a href="https://www.npr.org/sections/goatsandsoda/2017/10/16/558067629/how-white-cane-day-makes-a-difference">White Cane Day</a> on Oct. 15 to recognize the contributions of people with <a href="https://www.afb.org/blindness-and-low-vision/eye-conditions/low-vision-and-legal-blindness-terms-and-descriptions">blindness and low vision</a> and to promote equal opportunities. The day was first observed in the U.S. in 1964, when <a href="https://www.govinfo.gov/content/pkg/STATUTE-78/pdf/STATUTE-78-Pg1003.pdf#page=1">Congress passed a law</a> to increase awareness about the white cane’s role in promoting independent, safe travel for people with blindness or low vision.</p>
<p>More than <a href="https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_17_1YR_S1810&prodType=table">7.5 million Americans</a>, or 2.4% of the population, are blind or have low vision. Some people are born with blindness or low vision, but most people acquire vision loss, often at older ages. <a href="https://doi.org/10.1001/jamaophthalmol.2016.1284">Researchers estimate</a> that the incidence of blindness and low vision will rise rapidly through 2050 as the population ages.</p>
<p><a href="https://scholar.google.com/citations?user=GP-LmJwAAAAJ&hl=en&oi=ao">As researchers</a> <a href="https://scholar.google.com/citations?user=WpKc76YAAAAJ&hl=en&oi=ao">who study</a> issues related to blindness and low vision, we are interested in how society, its institutions, businesses and individuals currently perceive members of this population and how these perceptions may influence opportunities, particularly in terms of employment.</p>
<h2>How the world has changed</h2>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/296719/original/file-20191011-96217-cfl004.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/296719/original/file-20191011-96217-cfl004.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/296719/original/file-20191011-96217-cfl004.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/296719/original/file-20191011-96217-cfl004.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/296719/original/file-20191011-96217-cfl004.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/296719/original/file-20191011-96217-cfl004.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/296719/original/file-20191011-96217-cfl004.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Technological advances have led to devices, such as this Braille notetaker, that can help people who are blind in the classroom and at work.</span>
<span class="attribution"><span class="source">Megan Bean/Mississippi State University</span>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
</figcaption>
</figure>
<p>Since passage of that law 55 years ago, the world we live in has changed drastically. Advances in technology have significantly changed our everyday lives, and much progress in accessibility and inclusivity has occurred. <a href="https://www.ada.gov/ada_intro.htm">Federal laws</a> that protect people with disabilities from employment discrimination have been passed, and many companies have since adopted <a href="https://disabilityin.org/">inclusive hiring practices</a>. </p>
<p><a href="https://www.loc.gov/nls/resources/blindness-and-vision-impairment/devices-aids/assistive-technology-products-information-access/">Assistive technology</a> such as screen readers and screen magnifiers improve access to information and jobs. <a href="https://www.cnet.com/news/for-people-with-disabilities-accessibility-techs-still-not-all-it-could-be/">Built-in accessibility features</a> in mainstream technologies are increasingly common. Accessible transportation options are continually evolving, including <a href="https://www.afb.org/aw/17/11/15386">ride-hailing services</a> and <a href="https://doi.org/10.1080/10447318.2018.1561787">autonomous vehicles</a>.</p>
<p>These changes and innovations have increased opportunities and reduced some barriers for people who are blind or those who have low vision (for simplicity, we will use the term “blind” going forward). </p>
<h2>Ongoing employment challenges</h2>
<p>One thing that has not changed for many people who are blind is lack of access to the workforce. This is true for people with all types of disabilities, hence the celebration of <a href="https://www.dol.gov/odep/topics/ndeam/">National Disability Employment Awareness Month</a> in October. Our team of researchers at the <a href="https://www.blind.msstate.edu/">National Research and Training Center on Blindness and Low Vision</a> is addressing this issue for people who are blind.</p>
<p>The large disparities in employment rates that have historically existed for people who are blind still exist today. The <a href="https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_17_1YR_B18120&prodType=table">most recent data from the American Community Survey</a> indicates that 44.2% of people who are blind are employed and 10% are unemployed. This compares to an employment rate of 77.2% and unemployment rate of 4.8% for people without disabilities. </p>
<p>Why does employment continue to be a challenge for so many people who are blind? It may be that perceptions about the capabilities of the population have not changed.</p>
<h2>Employer perceptions about blind people</h2>
<p>One of the most common barriers to employment for people who are blind is negative employer attitudes. In several studies conducted between 2012 and 2017 with almost 1,000 employers, we measured employer attitudes and knowledge about how blind people can perform basic job functions. We included a measure of explicit (self-reported) attitudes toward individuals who are blind as employees and a <a href="https://implicit.harvard.edu/implicit/education.html">measure of implicit attitudes</a> about the competence of people who are blind. Implicit attitudes refer to subconscious beliefs or stereotypes that a person may hold but not be aware of and thus would be unable to report. </p>
<p>Our research with employers revealed the following:</p>
<ul>
<li><p><a href="https://doi.org/10.1177%2F0145482X1410800305">Employer knowledge is limited</a> about how people who are blind can perform basic job tasks.</p></li>
<li><p><a href="https://doi.org/10.1177%2F0034355216642598">Self-reported attitudes vary widely among employers</a>, from extremely negative to completely positive, but on average they fall in the middle, or neutral, range of our attitude measure.</p></li>
<li><p><a href="http://dx.doi.org/10.1037/rep0000235">Implicit attitudes also vary</a>, but on average are strongly negative, indicating that employers tend to automatically associate competence with sighted people and incompetence with blind people.</p></li>
<li><p>Knowing how blind people can perform job tasks is related to more positive <a href="https://doi.org/10.3233/JVR-180933">self-reported</a> and <a href="http://dx.doi.org/10.1037/rep0000235">implicit attitudes</a>.</p></li>
<li><p>More positive self-reported employer attitudes are <a href="https://doi.org/10.1177%2F0145482X1811200207">associated with a greater likelihood of hiring someone who is blind</a>. </p></li>
</ul>
<p>Our results verify the importance of employer attitudes toward blind people because of the association between attitudes and hiring. We know that knowledge is associated with more positive employer attitudes, but that knowledge is lacking among employers, and presumably among society in general. One potential avenue to improve employer attitudes is through increasing knowledge about how people who are blind function on the job. Most employers likely assume that a blind person cannot perform many essential job functions when in reality this is incorrect. </p>
<p>People who are blind can perform most jobs that sighted people can. There are not “jobs for blind people,” rather, most occupations in the economy are available to this population, given appropriate accommodations. You might be surprised to learn that people who are blind work in a <a href="https://www.ntac.blind.msstate.edu/businesses/whatjobs/">variety of jobs</a>. </p>
<p>They are <a href="https://www.ntac.blind.msstate.edu/businesses/blindworkers/profiles/profiles.php?profile=downey">architects</a>, <a href="https://bramblitt.com/pages/about-us">artists</a>, <a href="https://www.cbsnews.com/news/blind-auto-mechanic-feels-his-way-around/">auto mechanics</a>, <a href="https://twoblindbrothers.com/">fashion designers</a>, <a href="https://www.cnbc.com/2018/01/20/facebook-matt-king-profile-blind-engineer-helping-image-recognition.html">engineers</a>, <a href="https://www.ntac.blind.msstate.edu/businesses/blindworkers/profiles/profiles.php?profile=vermeij">scientists</a>, <a href="http://www.nbcnews.com/id/7318398/ns/health-health_care/t/blind-medical-student-earns-md/#.XZ4JWUY3mUk">physicians</a> and <a href="https://www.huffpost.com/entry/blind-judge-michigan_n_6386856">judges</a>. Many jobs previously unavailable to people who are blind are now accessible thanks to advances in technology. </p>
<h2>What people can do to open up opportunities</h2>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/296731/original/file-20191011-96208-mg1oqi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/296731/original/file-20191011-96208-mg1oqi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/296731/original/file-20191011-96208-mg1oqi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/296731/original/file-20191011-96208-mg1oqi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/296731/original/file-20191011-96208-mg1oqi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/296731/original/file-20191011-96208-mg1oqi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/296731/original/file-20191011-96208-mg1oqi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Refreshable Braille displays are just one example of technological advances that have opened up job opportunities for people who are blind.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/blind-person-using-computer-braille-display-428299819?src=1kkJv5_qVSS10lFDU8WJcQ-1-46">Zlikovec/Shutterstock.com</a></span>
</figcaption>
</figure>
<p><a href="https://uxpajournal.org/investigating-the-accessibility-and-usability-of-job-application-web-sites-for-blind-users/">Many employers have inaccessible job application sites</a>, and people who are blind have filed <a href="https://www.shrm.org/resourcesandtools/legal-and-compliance/employment-law/pages/job-applicants-sue-companies-with-difficult-online-forms.aspx">lawsuits</a> regarding their inability to use a screen reader to access job-related information on websites. Giving this group of people equal access to learn about and apply for any job of interest is an important first step. Employers should make all digital information related to jobs accessible, including the application process. Accessibility is not difficult, and much <a href="https://www.w3.org/WAI/">support is available for this effort</a>. </p>
<p>In addition, employers and society in general should <a href="https://www.ntac.blind.msstate.edu/businesses/quiz/">learn about how people who are blind can perform tasks</a> for which sighted people rely on their vision. This is one of the best ways to change perceptions. Attending your local White Cane Day event is a great opportunity to learn about this population. Events such as this and National Disability Employment Awareness Month are important to increase awareness about the capabilities of people who are blind and the employment challenges they continue to face.</p>
<p>[ <em>You’re smart and curious about the world. So are The Conversation’s authors and editors.</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=youresmart">You can read us daily by subscribing to our newsletter</a>. ]</p><img src="https://counter.theconversation.com/content/124977/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michele McDonnall receives funding from the National Institute on Disability, Independent Living, and Rehabilitation Research (grant #90RT5040). </span></em></p><p class="fine-print"><em><span>Jennifer L. Cmar receives funding from the National Institute on Disability, Independent Living, and Rehabilitation Research (grant #90RT5040). </span></em></p>People who are blind have made great strides in the workplace in the 55 years since the US first observed White Cane Day. Yet discrimination in employment still remains, two experts explain.Michele McDonnall, Research Professor and Director, Mississippi State UniversityJennifer L. Cmar, Assistant Research Professor, Mississippi State UniversityLicensed as Creative Commons – attribution, no derivatives.