tag:theconversation.com,2011:/nz/topics/disability-1181/articlesDisability – The Conversation2024-03-26T16:39:21Ztag:theconversation.com,2011:article/2248452024-03-26T16:39:21Z2024-03-26T16:39:21ZAccessibility remains an afterthought – how NZ’s digital health tools risk excluding people with disabilities<figure><img src="https://images.theconversation.com/files/584241/original/file-20240325-26-kehuos.jpg?ixlib=rb-1.1.0&rect=125%2C143%2C5865%2C2820&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>Alongside my career path from a PhD in computer science, work as a nurse and ambulance officer and now a university lecturer in nursing, I have become progressively deafblind. </p>
<p>As a result, I have personal experience navigating New Zealand’s health system, both as an employee and patient living with dual sensory loss. </p>
<p>My experiences provide me with a unique perspective on how important it is to integrate technology well into healthcare practices. Currently, accessibility is often lacking or insufficient, both for staff and patients.</p>
<p>My <a href="https://ebooks.hinz.nz/view/260843176/">work</a> focuses on bridging the gap between technology and nursing to make digital health accessible. A broader review of existing research confirms this need: accessibility is often an afterthought in software development, and digital health solutions are <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9719765/">designed in a way that makes them inaccessible</a>.</p>
<h2>Accessibility must be part of early software design</h2>
<p>One in four New Zealanders <a href="https://www.odi.govt.nz/home/about-disability/key-facts-about-disability-in-new-zealand/">lives with a disability</a>. Despite this significant portion of the population, digital solutions often overlook their needs.</p>
<p>For example, the YourRide taxi booking app’s launch last year has created difficulties for <a href="https://www.transport.govt.nz/area-of-interest/strategy-and-direction/total-mobility-scheme/">total mobility scheme</a> card holders, with some struggling to access their taxi service equitably. With 89,000 individuals relying on the scheme in 2022, it is essential that they have equity in access to taxi transportation. </p>
<p>The app does not cater for total mobility card holders and a national taxi company is making them call by phone to confirm their status. This is further complicated by a malfunctioning text-as-taxi-approaches system, leaving those without app access no way of knowing how far away the taxi is without phoning the company. </p>
<p>This system has led to delays, multiple phone calls and missed appointments. Had the app been designed with total mobility card holders from the beginning, these issues could have been avoided.</p>
<p>The lack of emphasis on accessibility often begins at the early stages of software development, which <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9719765/">leads to inaccessible digital health solutions</a>. </p>
<p>While major companies like Apple and Microsoft have proprietary accessibility libraries, their usage is not widespread and considerably variable. Some <a href="https://www.powermapper.com/products/sortsite/ads/acc-wcag-testing/?gad_source=1&gclid=CjwKCAjwnv-vBhBdEiwABCYQA1nKUST_PxwiwESoU-_Ha31EtoJHRMjmBIj59YpvRohLKaPTHTYiYRoC_ecQAvD_BwE">accessibility test tools</a> exist for web-based applications, but their implementation varies. And not all digital health solutions are web-based and guidelines for native applications are scarce. </p>
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Read more:
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<p>It is important to integrate accessibility in the design phase of any project. One of the recommendations of a <a href="https://ebooks.hinz.nz/view/260843176/">Digital Health Leadership Summit</a> held in 2023 was that New Zealand should adopt a national strategy for accessibility in digital health, moving away from the fragmented approach. </p>
<p><a href="https://pubmed.ncbi.nlm.nih.gov/34991540/">Community engagement and collaboration are crucial</a> to informing design in digital health and enhancing data collection and analysis. Projects such as <a href="https://www.tewhatuora.govt.nz/our-health-system/digital-health/hira-connecting-health-information/#what-is-hira">Hira</a>, which put in place the foundations for initiatives such as <a href="https://www.tewhatuora.govt.nz/our-health-system/digital-health/my-health-record/#about-my-health-record">My Health Record</a>, foster inclusivity, user-centred design, legislative compliance and equitable resource access. </p>
<p>Considering accessibility in the design phase and upholding ethical standards in digital health is essential. Flexible and adaptable solutions that cater to diverse access needs are necessary, along with clear information, navigation and personalisation to meet the specific requirements of individuals with disabilities. </p>
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Read more:
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<h2>Gaps between recommendations and reality</h2>
<p>Unlike some other countries, New Zealand does not have legislation explicitly addressing or policing accessibility. </p>
<p>In 2022, the United Nations examined New Zealand’s performance under the <a href="https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities">Convention on the Rights of Persons with Disabilities</a> and highlighted:</p>
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<p>… a lack of recognition, across all government portfolio areas, that disability is a whole-of-government responsibility.</p>
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<p>The UN also stressed that legislative and policy frameworks on disability should align with the Treaty of Waitangi to ensure active involvement in decision making and consultation with Māori with disabilities. It recommended a national strategy to increase awareness and promote respect for the rights and dignity of people with disabilities.</p>
<p>The discrepancy between recommendations and reality may be related to employment. Only <a href="https://www.stats.govt.nz/information-releases/labour-market-statistics-disability-june-2023-quarter/">44% of people with disabilities are employed</a>, compared with <a href="https://www.stats.govt.nz/indicators/employment-rate/">69% of those without disabilities</a>. This disparity in employment rates suggests a need for greater inclusivity and support for individuals with disabilities in the workforce. </p>
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<img alt="A girl in a doctor's room using sign language" src="https://images.theconversation.com/files/584248/original/file-20240325-28-wnh0w6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/584248/original/file-20240325-28-wnh0w6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=395&fit=crop&dpr=1 600w, https://images.theconversation.com/files/584248/original/file-20240325-28-wnh0w6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=395&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/584248/original/file-20240325-28-wnh0w6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=395&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/584248/original/file-20240325-28-wnh0w6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=496&fit=crop&dpr=1 754w, https://images.theconversation.com/files/584248/original/file-20240325-28-wnh0w6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=496&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/584248/original/file-20240325-28-wnh0w6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=496&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">sign languge.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com.au/detail/photo/adorable-smiling-little-caucasian-girl-standing-and-royalty-free-image/1398189833?phrase=sign+language+hospital&adppopup=true">Getty Images/PeopleImages</a></span>
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<h2>Perceptions of disability</h2>
<p>In healthcare, staff with access needs appear to be undeserved. </p>
<p>My first experience of this was when I worked as a nurse. I had disclosed my disability and was using a magnifying glass to check drug vials when giving medications. I had made no errors.</p>
<p>But the charge nurse nevertheless told me she no longer wanted me to use a magnifying glass as it decreased the public’s trust. If I had been quicker off the mark, I could have asked how a magnifying glass differs from reading glasses. </p>
<p>Her attitude raises important considerations regarding the perception of disability within healthcare environments. Her request to restrict the use of a tool that allowed error-free medication checks highlights a potential lack of understanding or sensitivity towards the needs of individuals with disabilities.</p>
<p>Last year, a German survey using sign language found that a lack of understanding of disability needs meant that deaf people were choosing not to engage with the healthcare system. </p>
<p>A similar survey in New Zealand could provide valuable insights into the barriers deaf people face. It could compare the effectiveness of digital versus face-to-face consultations and exploring the use of digital solutions such as closed captions in tele-health consultations.</p>
<h2>Lingering undercurrents of discrimination</h2>
<p>The <a href="https://www.odi.govt.nz/guidance-and-resources/a-brief-history-of-disability-in-aotearoa-new-zealand/">historical treatment of individuals with disabilities</a> within pākehā society was marked by a pervasive view of disability as a deficiency. </p>
<p>Rooted in the medical model of health which historically focused on deficits and impairments, the prevailing attitudes towards disability have often been shaped by societal norms that prioritise able-bodiedness. This has led to the marginalisation and stigmatisation of individuals with disabilities, who were seen as a deviation from the norm.</p>
<p>The legacy of these historical perceptions continues to linger. Despite advancements in understanding and awareness, an undercurrent of discrimination and exclusion prevails. This is reflected in the limited access to resources, opportunities and support systems available to individuals with disabilities.</p>
<p>People with disabilities have a long history of distrust in the health and disability systems in New Zealand. Improving education and training, building trust and promoting effective data sharing are essential for enhancing their care and experiences.</p>
<p>My goal is to advocate for this change. I want to ensure that digital health tools are designed with an equity lens, where disability, just like culture and gender, is given due consideration. This isn’t just about technology. It’s about reshaping our society’s approach to health, disability and inclusivity.</p><img src="https://counter.theconversation.com/content/224845/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sally Britnell is affiliated with Health Informatics New Zealand as a Board Member, DeafBlind Association New Zealand as a Board Member and is employed by Auckland University of Technology. </span></em></p>New Zealand has no legislation, nor a national strategy, explicitly addressing or policing accessibility to digital health tools.Sally Britnell, Senior Lecturer in Nursing, Auckland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2266202024-03-26T06:31:36Z2024-03-26T06:31:36ZStates agreed to share foundational support costs. So why the backlash against NDIS reforms now?<figure><img src="https://images.theconversation.com/files/584308/original/file-20240326-28-6cpw93.jpg?ixlib=rb-1.1.0&rect=10%2C0%2C7002%2C4763&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/group-people-holding-hand-together-park-600881606">Rawpixel.com/Shutterstock</a></span></figcaption></figure><p>On Monday evening Australia’s state premiers and territory chief ministers <a href="https://www.smh.com.au/politics/federal/premiers-revolt-over-federal-ndis-law-fearing-cost-time-bomb-20240325-p5ff4x.html">got together and called on</a> the federal government to delay or amend draft laws to overhaul the National Disability Insurance Scheme (NDIS). The laws are to determine how states provide “foundational supports”, a key recommendation of the <a href="https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis">NDIS Review</a>. </p>
<p>There was a sense of optimism in December when National Cabinet agreed the states and Commonwealth would <a href="https://theconversation.com/whats-the-difference-between-reasonable-and-necessary-and-foundational-supports-heres-what-the-ndis-review-says-216074">split the funding of foundational supports</a> and the Commonwealth would <a href="https://theconversation.com/states-agree-to-do-more-heavy-lifting-on-disability-in-exchange-for-extra-health-and-gst-funding-219321">add billions to strengthen Medicare</a>. This was meant to ease the costs of specialist support within the NDIS. </p>
<p>So why are the details proving controversial now? And does the backlash mean NDIS reforms might fall over at the first hurdle? </p>
<h2>Creating other avenues of support</h2>
<p>Last year’s NDIS Review was tasked, among other things, with considering the financial sustainability of the scheme. </p>
<p>The review argued there is no single issue driving the growing cost pressure of the NDIS. But the lack of accessible and inclusive mainstream services for people with disability was pushing them into the NDIS. This means more people are on the scheme than was originally intended. </p>
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Read more:
<a href="https://theconversation.com/recommendations-to-reboot-the-ndis-have-finally-been-released-5-experts-react-215805">Recommendations to reboot the NDIS have finally been released. 5 experts react</a>
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<p>We have seen particular growth in the number of young people with autism and developmental delay <a href="https://theconversation.com/australias-rates-of-autism-should-be-celebrated-but-real-life-impact-not-diagnosis-should-determine-ndis-support-217921">entering the NDIS</a>. <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">One in ten boys</a> aged between five and seven have an NDIS plan when starting school.</p>
<p>While this could indicate the original scheme estimates were not correct, it’s likely a significant proportion of demand is being driven by a <a href="https://www.theguardian.com/australia-news/2023/dec/07/ndis-review-costs-national-disability-insurance-scheme-bill-shorten">lack of other available supports</a> through mainstream services.</p>
<h2>Supports the states used to provide</h2>
<p>The NDIS was never intended to provide services to all people with disability and about 86% of disabled Australians <a href="https://www.ndis.gov.au/understanding/ndis-each-state">do not have NDIS plans</a>. Those without NDIS plans access the same mainstream services as the rest of the population – be they schools, health services or public transport. </p>
<p>But mainstream services are not always accessible to people with disability. <a href="https://library.bsl.org.au/bsljspui/bitstream/1/13113/1/Olney_etal_Tier2_tipping_point_support_without_individual_NDIS_funding_2022.pdf">Research</a> from the University of Melbourne in 2022 shows the vast majority of Australians with disability who don’t have NDIS plans can’t access the services and supports they need. When this happens people have to go without or pay for additional supports such as taxis, mobility equipment or domestic assistance themselves.</p>
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Read more:
<a href="https://theconversation.com/whats-the-difference-between-reasonable-and-necessary-and-foundational-supports-heres-what-the-ndis-review-says-216074">What's the difference between 'reasonable and necessary' and 'foundational' supports? Here's what the NDIS review says</a>
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<p>Since the <a href="https://theconversation.com/a-decade-on-the-ndis-has-had-triumphs-challenges-and-controversies-where-to-from-here-208463">establishment of the NDIS</a> over a decade ago, states and territories have pulled back from providing some services for people with disability. </p>
<p>Home and community care programs to support people under 65 years of age with less intensive disability needs, for example, are inconsistent and underfunded in many places. So if a person with disability needs help with some shopping or cleaning, their only option for support may well be to apply to join the NDIS. </p>
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<img alt="The NDIS’s current system is disconnected and has a support gap." src="https://images.theconversation.com/files/564083/original/file-20231207-27-hiqzt.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/564083/original/file-20231207-27-hiqzt.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=466&fit=crop&dpr=1 600w, https://images.theconversation.com/files/564083/original/file-20231207-27-hiqzt.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=466&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/564083/original/file-20231207-27-hiqzt.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=466&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/564083/original/file-20231207-27-hiqzt.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=585&fit=crop&dpr=1 754w, https://images.theconversation.com/files/564083/original/file-20231207-27-hiqzt.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=585&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/564083/original/file-20231207-27-hiqzt.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=585&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">The NDIS’s current system is disconnected and has a support gap.</span>
<span class="attribution"><a class="source" href="https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis">NDIS Review</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
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<h2>Are these reforms a surprise?</h2>
<p>The NDIS Review acknowledges the scale of reform outlined in its recommendations are significant and should be transitioned to over a five-year period. But many of the changes that will take place within the NDIS are dependent on having foundational services in place outside the scheme. <a href="https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis/part-one-unified-system-support-people-disability-0">Foundational supports</a> are a key priority in the reform process. </p>
<p>The development of a foundational supports strategy should not have taken states and territories by surprise. The day before the NDIS Review was launched in December, National Cabinet reached its decision to share foundational support costs equally between the Commonwealth and states and territories. And at the end of January, the Commonwealth committed A$11.6 million over two years to support the development and implementation of the foundational supports strategy. </p>
<p>Although fresh reports say state and territory leaders fear “uncosted” foundational supports, premiers were <a href="https://www.theguardian.com/australia-news/2023/dec/06/albanese-strikes-105bn-deal-with-states-to-split-cost-of-non-ndis-disability-services-in-return-for-gst-funding">reportedly given an indication of additional costs</a> at the December National Cabinet meeting. </p>
<p>Since then, state and territory governments will have been working to determine exactly what foundational services are needed in their jurisdictions and how many people might want to access these. Given the NDIS Review <a href="https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis/preface/recommendations-and-actions">recommended better and more detailed data collection</a>, many of these governments likely don’t have good enough data to easily understand what the demand for these services might be and therefore what they might cost. </p>
<p>While states and territories appear to have signed up to the general direction of reform, the latest reports suggest premiers are concerned at the speed and the scale of the changes. In a context of <a href="https://www.afr.com/politics/another-12b-debt-blowout-in-victoria-sets-scene-for-horror-budget-20240308-p5faxz">tight state budgets</a> there are likely also fears of extra budgetary pressures from developing new systems of support. </p>
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Read more:
<a href="https://theconversation.com/there-is-overwhelming-gender-bias-in-the-ndis-and-the-review-doesnt-address-it-220042">There is overwhelming gender bias in the NDIS – and the review doesn't address it</a>
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<h2>Future disability reform</h2>
<p>Debates over <a href="https://theconversation.com/a-tussle-between-the-federal-and-state-governments-over-disability-supports-is-looming-what-should-happen-next-217839">which parts of government should fund which services</a> are not new. But focusing on who pays for what misses the bigger picture. </p>
<p>Getting a system of foundational supports in place is essential not only for the sustainability of the NDIS but also for all those disabled Australians who are currently going without necessary supports to live their lives. As a signatory to the <a href="https://humanrights.gov.au/our-work/disability-rights/united-nations-convention-rights-persons-disabilities-uncrpd">United Nations Convention on the Rights of Persons with Disability</a>, Australia has a commitment to protect the rights of people with disabilities and ensure their full inclusion in society. </p>
<p>The NDIS is one part of realising this commitment, but it will not be able to achieve this on its own. If they can’t access mainstream services, disabled people are shut out from participation in aspects of daily life we should all be able to take for granted. </p>
<p><a href="https://twitter.com/dougie_herd/status/1772429314794897516">Disability advocates</a> argue delaying tactics from states and territories are unacceptable and <a href="https://www.abc.net.au/listen/programs/radionational-breakfast/-distressing-premiers-push-to-delay-ndis-overhaul/103632124?utm_campaign=abc_listen&utm_content=twitter&utm_medium=content_shared&utm_source=abc_listen">reform needs to happen now</a>. The federal government seems committed to the top recommendation of the NDIS Review. It remains to be seen whether the states and territories are ready to move at the same pace.</p><img src="https://counter.theconversation.com/content/226620/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Helen Dickinson receives funding from ARC, NHMRC and CYDA.</span></em></p>If states and territories agreed to share the cost of foundational supports in December, why are they baulking now?Helen Dickinson, Professor, Public Service Research, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2264622024-03-25T18:30:37Z2024-03-25T18:30:37ZA B.C. class action may prompt Uber and Lyft to ensure accessible services for wheelchair users<figure><img src="https://images.theconversation.com/files/583952/original/file-20240325-28-b5vorr.jpg?ixlib=rb-1.1.0&rect=22%2C0%2C3728%2C2502&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Ride hailing apps can be convenient for some, and inaccessible for others.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>For wheelchair users, travelling by using ride-hailing apps, like Uber and Lyft, can be complicated. On March 20, a class action was announced <a href="https://bc.ctvnews.ca/systemic-issue-class-action-filed-against-uber-lyft-alleges-lack-of-accessibility-in-b-c-1.6817672">against Uber and Lyft</a> in British Columbia for allegedly not providing service to a wheelchair user. One of the goals of the class action is to bring about systemic change to the companies’ practices. </p>
<p>In the United States — where my research into ride hailing apps took place — lawsuits by wheelchair users or disability organizations against the companies are all too familiar. Sometimes, the outcomes of the suits resulted in <a href="https://www.cnet.com/tech/mobile/lyft-pays-40000-fine-over-claims-it-denied-disabled-passengers-rides/">payments to riders who were not provided service</a> due to their use of wheelchair. </p>
<p>Other times, the <a href="https://www.politico.com/states/new-york/city-hall/story/2018/06/13/new-york-city-and-uber-reach-settlement-on-wheelchair-accessibility-466459">rulings attempted to bring systemic changes</a>. In a case that involved wheelchair users in Jackson, Miss. and New Orleans, La., <a href="https://www.pbs.org/newshour/economy/california-federal-judge-says-uber-doesnt-have-to-offer-wheelchair-accessible-vehicles">the ruling was in favour of the companies</a>.</p>
<p>The class action in B.C. draws attention to issues of accessibility in the transportation service hailed via Uber and Lyft for people with disabilities, in particular wheelchair users. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/583951/original/file-20240325-18-m69vwh.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C3834%2C2155&q=45&auto=format&w=1000&fit=clip"><img alt="a man in a wheelchair outdoors looks at his phone" src="https://images.theconversation.com/files/583951/original/file-20240325-18-m69vwh.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C3834%2C2155&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/583951/original/file-20240325-18-m69vwh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/583951/original/file-20240325-18-m69vwh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/583951/original/file-20240325-18-m69vwh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/583951/original/file-20240325-18-m69vwh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/583951/original/file-20240325-18-m69vwh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/583951/original/file-20240325-18-m69vwh.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"></a>
<figcaption>
<span class="caption">Despite some of the advantages, wheelchair users can experience challenges when hailing transportation services with apps.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Usable transportation</h2>
<p>Accessibility issues related to wheelchair use are not about whether the apps are usable. They are also not about whether the apps provide information on accessible routes. Rather, they are about whether the actual transportation service hailed through them is usable.</p>
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Read more:
<a href="https://theconversation.com/transportation-apps-can-help-people-with-disabilities-navigate-public-transit-but-accessibility-lags-behind-208011">Transportation apps can help people with disabilities navigate public transit but accessibility lags behind</a>
</strong>
</em>
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<p>Between 2020 and 2021, I conducted a U.S.-wide survey, where I found that <a href="https://doi.org/10.1177/03611981221140369">some wheelchair users were satisfied</a> with the service, while others were not. Those who were satisfied cited the ability to see the cost of the ride up front, the door-to-door service and convenience. Others reported experiencing various challenges, including the lack of wheelchair-accessible vehicles (WAVs), being declined service by drivers and long wait times. </p>
<p>My study revealed that several factors were associated with the ability to use Uber and Lyft successfully. </p>
<h2>Wheelchairs and vehicles</h2>
<p>The type of wheelchair a rider uses affects access. Riders with foldable wheelchairs have better odds of using these services successfully because the wheelchair can be folded and stowed in most vehicles. </p>
<p>The majority of the survey respondents who reported they were not Uber and Lyft customers used fixed-frame wheelchairs. </p>
<p>Riders who need to remain seated in a wheelchair during travel or use fixed-frame wheelchairs have lower odds of success using the services. They can only travel in WAVs, which are not as commonly available on the apps as four-door sedans used for basic level service. For riders who need WAVs, this can mean long wait times – on average twice more than the wait time for basic service, as I found in my study. It can also mean no service at all. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/pLfPul-UKjw?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Passengers using wheelchairs experience long wait times for accessible vehicles.</span></figcaption>
</figure>
<p>While travellers who use foldable wheelchairs have better odds of obtaining a vehicle that can fit their wheelchair through basic service options, they experience a different kind of challenge. Some of the respondents who used a manual wheelchair reported experiencing withdrawn services — when the driver declines to take the ride. <a href="https://doi.org/doi:10.17610/T6DK5J">Other studies</a> report similar experiences.</p>
<p>The class action in B.C. is based on the complainant’s experience related to shortage or unavailability of WAVs for those with fixed-frame wheelchairs or who need to remain seated during travel. </p>
<h2>Unavailabilities and shortages</h2>
<p>Previously, the companies’ responses to allegations of discrimination against wheelchair users in the U.S. have been that <a href="https://www.cityandstateny.com/policy/2019/05/disabled-riders-face-scarcity-of-accessible-vehicles/177380/">they are technology companies</a> — rather than transportation companies — that connect riders and drivers. </p>
<p>Uber used the same argument in a recent case that was brought to the <a href="https://bc.ctvnews.ca/uber-ordered-to-pay-35k-in-damages-provide-wheelchair-accessible-rides-in-b-c-s-lower-mainland-1.6803133">B.C. Human Rights Tribunal</a>.</p>
<p>This configuration means that they do not own a fleet of vehicles but rely on cars that drivers bring. As such, they are not obligated to provide WAVs. In Washington, D.C., for instance, taxi companies that own at least 20 vehicles are required that a percentage of their fleet consist of WAVs. There is no equivalent requirement for Uber and Lyft. </p>
<p>The companies have provided WAV ride options on their apps in select cities primarily by forming partnerships with third-party transportation companies. <a href="https://www.uber.com/us/en/about/accessibility/">UberWAV</a> began in 2018 and <a href="https://help.lyft.com/hc/en-us/all/articles/115013081668#regions">Lyft Access</a> in 2019 in Toronto, Washington, D.C., the San Francisco Bay Area and other larger markets.</p>
<p>These services are not available in many other cities, and wheelchair users seeking WAV rides are <a href="https://help.lyft.com/hc/en-us/all/articles/115013081668#local">directed to either local taxis or paratransit services offered by transit agencies or municipal governments</a>. </p>
<p>However, <a href="https://www.sfmta.com/sites/default/files/reports-and-documents/2019/05/tnc_and_disable_access_whit_paper-rev11_2.pdf">directing wheelchair users to other services by providing a list of accessible options is not considered equivalent</a> to the service the companies offer to non-disabled travellers. </p>
<h2>Supply and regulations</h2>
<p>The companies say that in the cities where they do not operate WAV services, there is <a href="https://www.fox5ny.com/news/disabled-advocates-fight-lyfts-discrimination-with-federal-lawsuit">not enough supply of WAVs</a>. <a href="https://www.nbcnews.com/news/us-news/disability-rights-groups-battle-lyft-wheelchair-accessible-vehicles-rcna43999">Disability advocates disagree</a>, saying that the lack of WAV services has to do with the lack of disability regulations in those areas.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/583953/original/file-20240325-24-244jlr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="a wheelchair is being lifted through the rear doors of a van" src="https://images.theconversation.com/files/583953/original/file-20240325-24-244jlr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/583953/original/file-20240325-24-244jlr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/583953/original/file-20240325-24-244jlr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/583953/original/file-20240325-24-244jlr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/583953/original/file-20240325-24-244jlr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/583953/original/file-20240325-24-244jlr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/583953/original/file-20240325-24-244jlr.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">Wheelchair accessible vehicles are often adapted to the specific needs of their users.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>In markets where Uber and Lyft have WAV service options on their apps, there is a shortage of WAVs. For drivers, there is little financial incentive in purchasing these vehicles to work on the Uber and Lyft apps. The vehicles are <a href="https://ggwash.org/view/68138/without-accommodations-uber-and-lyft-are-leaving-customers-with-disabilities-at-the-curb">more expensive to purchase, insure, run and maintain</a> than cars used for basic service level.</p>
<p>Individuals who have access to WAVs for personal or family use may not sign up to drive on the apps. Accessibility modifications to WAVs are <a href="https://www.sfmta.com/sites/default/files/reports-and-documents/2019/05/tnc_and_disable_access_whit_paper-rev11_2.pdf">unique to the user</a> and may not be suitable for all. </p>
<p>People with disabilities travel in personal cars as passengers. As I found in my study, many wheelchair users do not drive or own a driver’s licence due to their disability. Someone who is responsible for transporting a family member with disability may not have the availability to drive for a ride hailing service.</p>
<p>Wheelchair users who drive WAVs may not be able to assist a passenger in a wheelchair during vehicle entry and exit and securing wheelchair restraint inside the vehicle.</p>
<p>At the root of the WAV service wars is the companies’ platform business model as technology companies connecting service seekers and providers. This three-party configuration — composed of users, providers and platforms — <a href="https://btlj.org/wp-content/uploads/2015/11/1067-1126_Katz_Final-111915.pdf">has been an obstacle to regulate these companies in general</a>. Any systemic improvement will need to address that. </p>
<h2>Providing accessible services</h2>
<p>While an overhaul of the existing configuration may not be possible in the short term, changes to the companies’ business model or current disability accommodation practices or lack thereof maybe inevitable. </p>
<p>The lawsuits in the U.S. and Canada demonstrate that people with disabilities will continue to ask for services that meet their needs. My research shows that even wheelchair users who are currently unable to use Uber and Lyft see promise in a convenient, on-demand transportation service hailed through the apps. </p>
<p>The companies can meet them halfway. Or the courts might bring them there — eventually.</p><img src="https://counter.theconversation.com/content/226462/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mahtot Gebresselassie 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 class action lawsuit filed against Uber and Lyft in British Columbia draws attention to the experiences of wheelchair users.Mahtot Gebresselassie, Assistant Professor, Environmental and Urban Change, York University, CanadaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2224752024-02-20T14:31:08Z2024-02-20T14:31:08ZDefying expectations, disabled Japanese macaques survive by adjusting their behaviours and receiving support<figure><img src="https://images.theconversation.com/files/576169/original/file-20240216-30-6btxw6.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5184%2C3453&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A disabled young female macaque named Monmo at the Awajishima Monkey Center in Japan.</span> <span class="attribution"><span class="source">(Sarah E. Turner)</span>, <span class="license">Author provided</span></span></figcaption></figure><p>Nina is a Japanese macaque, one of the red-faced monkeys famous for sitting in hot springs in Japan. Nina lives wild in the forest, but most days, along with her group, she visits the <a href="https://monkey-center.jp/english.php">Awajishima Monkey Center</a> to eat the food people provide for the monkeys. </p>
<p>Nina was born without hands, <a href="https://doi.org/10.1007/s10329-008-0083-4">an unusually common occurrence in this group of macaques</a>. While no one knows for sure why these malformations of the limbs and digits occur, many researchers have suggested a potential link to pesticides or <a href="https://doi.org/10.1007/%20s10329-014-0405-7">other environmental contaminants</a>. </p>
<p>Nina survived because of a combination of factors: her ability to modify her behaviours to compensate for her physical impairments; the extra care provided by her mother when she was little; and living in a group of monkeys who treat her much <a href="https://doi.org/10.1016/j.jhevol.2014.01.002">the same way they do non-disabled group members</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/576171/original/file-20240216-18-i4irp6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="an infant and older macaque in the middle of the road" src="https://images.theconversation.com/files/576171/original/file-20240216-18-i4irp6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/576171/original/file-20240216-18-i4irp6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=657&fit=crop&dpr=1 600w, https://images.theconversation.com/files/576171/original/file-20240216-18-i4irp6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=657&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/576171/original/file-20240216-18-i4irp6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=657&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/576171/original/file-20240216-18-i4irp6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=826&fit=crop&dpr=1 754w, https://images.theconversation.com/files/576171/original/file-20240216-18-i4irp6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=826&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/576171/original/file-20240216-18-i4irp6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=826&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Nina, a juvenile disabled female Japanese macaque at the Awajishima Monkey Center, sitting with an older Juvenile.</span>
<span class="attribution"><span class="source">(Brogan M. Stewart)</span></span>
</figcaption>
</figure>
<p>Over the years, we have spent many hours observing Nina and other disabled and non-disabled monkeys, as they live their lives — moving through the forest, socializing with others in their group and finding novel ways of adjusting their behaviours to compensate for physical impairments. </p>
<p>Disability is a <a href="https://www.un.org/development/desa/disabilities/resources/factsheet-on-persons-with-disabilities.html">normal part of human experience</a>, with at least <a href="https://www.who.int/news-room/fact-sheets/detail/disability-and-health">16 per cent of people experiencing some form of disability</a>. However, while conducting research at Awajishima, we have noticed that many people expect that disabled animals would be unlikely to survive. However, Nina and other disabled macaques in her group can survive and reproduce, and are far from being alone among primates of the world. </p>
<h2>Primates and disability</h2>
<p>In a recently published review of the literature on non-human primates and disability in the <em>American Journal of Primatology</em>, we found that <a href="https://doi.org/10.1002/ajp.23579">physical impairment is more common among wild and free-ranging primates than most people might think</a>. </p>
<p>We found 114 published papers on primates with disability, not including all the casual observations and field notes that were not published in the scientific literature. These papers included 37 species of non-human primates — monkeys, apes and lemurs — from 70 different study sites (38 of those with wild and free-ranging primates).</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/576172/original/file-20240216-16-wcme8i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="a group of monkeys in the middle of a path, three of them are grooming each other" src="https://images.theconversation.com/files/576172/original/file-20240216-16-wcme8i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/576172/original/file-20240216-16-wcme8i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/576172/original/file-20240216-16-wcme8i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/576172/original/file-20240216-16-wcme8i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/576172/original/file-20240216-16-wcme8i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/576172/original/file-20240216-16-wcme8i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/576172/original/file-20240216-16-wcme8i.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">Disabled and non-disabled monkeys hanging out and socially grooming at the Awajshima Monkey Center in Japan.</span>
<span class="attribution"><span class="source">(Sarah E. Turner)</span></span>
</figcaption>
</figure>
<p>About 45 per cent of these disabilities, like Nina’s, were present from birth, while approximately 24 per cent came from injury, with similar frequency caused by a condition or illness. </p>
<p>Behavioural flexibility or plasticity (the ability to modify activities and actions in response to specific circumstances), the innovation of novel behaviours and extra maternal care stood out in the published research papers.</p>
<p>Seventy papers reported on ways that primates used behavioural flexibility and innovations to compensate for physical impairments, or provided examples of mothers who were able to support the needs of their physically impaired offspring. There were also some instances of other relatives and group members also providing support. </p>
<p>Overall, there was little evidence of social selection against disabled primates. There were also many examples of undifferentiated treatment for disabled individuals, and a few examples of disability-associated care behaviours.</p>
<h2>Human causes of primate disability</h2>
<p>Having studied disabled monkeys, we were not surprised to learn about the behavioural plasticity we found in this review. What was more surprising to us was just how many of these disabilities were linked to anthropogenic activities. </p>
<p>There are many ways that human activities can lead directly and indirectly to long-term disability in our closest animal relatives. Sixty per cent of the published examples of primate disability we surveyed were linked to human causes. </p>
<p>These included: injuries from <a href="https://doi.org/10.1046/j.1365-2028.2002.00356.x">hunting snares among chimpanzees and gorillas</a>; injuries sustained on <a href="https://doi.org/10.1007/s10764-014-9779-z">roads or from electrical wires in South African baboons</a> and <a href="https://doi.org/10.1896/044.014.0206">South American howler monkeys</a>; and the effects of <a href="https://doi.org/10.1098/rstb.1985.0020">diseases transmitted between human and non-human primates</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/576599/original/file-20240219-21-gxzmo5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="a monkey with a malformed hand in the foreground, other monkeys in the background" src="https://images.theconversation.com/files/576599/original/file-20240219-21-gxzmo5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/576599/original/file-20240219-21-gxzmo5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=713&fit=crop&dpr=1 600w, https://images.theconversation.com/files/576599/original/file-20240219-21-gxzmo5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=713&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/576599/original/file-20240219-21-gxzmo5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=713&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/576599/original/file-20240219-21-gxzmo5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=896&fit=crop&dpr=1 754w, https://images.theconversation.com/files/576599/original/file-20240219-21-gxzmo5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=896&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/576599/original/file-20240219-21-gxzmo5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=896&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">A disabled infant macaque with her mother in the background at the Awajishima Monkey Center in Japan.</span>
<span class="attribution"><span class="source">(Sarah E. Turner)</span></span>
</figcaption>
</figure>
<h2>Human pressure, increasing threats</h2>
<p>At a time when the majority of non-human primates are experiencing declining populations and <a href="https://doi.org/10.1126/sciadv.abn2927">are threatened with extinction</a>, this link between human activities and physical impairments in primates is a poignant reminder of how humans are impacting other life on Earth. </p>
<p>Wherever non-human primates are found in the world — throughout the tropics and as far north as Japan — they face compounding threats from human pressures. As humans increasingly convert forests and wild lands to agricultural and urban spaces, habitat loss is pushing many <a href="https://doi.org/10.1126/sciadv.1600946">primate species towards extinction</a>. </p>
<p>These pressures are exacerbated by resource extraction (often to meet market demand from the Global North), hunting, the exotic pet trade and disease. The threat of major impacts from <a href="https://doi.org/10.1007/s10584-020-02776-5">climate change is also looming on the horizon</a>. Even the most behaviourally flexible, smart, care-giving and innovative of individuals and species may not be able to navigate the scope and variety of these changes and pressures.</p>
<p>Physically impaired and disabled primates often find ways to behaviourally compensate for their impairments, survive and reproduce. </p>
<p>Nina and her friends show us an important side of non-human primate behaviour, giving us a model to examine the capacity for behavioural flexibility in nonhuman primates. Our research also underscores the critical role that humans have in shaping the futures of our closest animal relatives.</p><img src="https://counter.theconversation.com/content/222475/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sarah E. Turner receives funding from the Natural Sciences and Engineering Research Council of Canada - Leadership in Environmental and Digital innovation for Sustainability (LEADS-CREATE), Fonds de recherche du Québec ‐ Nature et technologies, MITACS Globalink Research Awards, the Quebec Centre for Biodiversity Science, and Concordia University.</span></em></p><p class="fine-print"><em><span>Brogan M. Stewart receives funding from NSERC - Alexander Graham Bell and CREATE in the Leadership in Environmental and Digital innovation for Sustainability (LEADS), FRQNT, Concordia University, Kyoto University, Quebec Centre for Biodiversity Science, and MITACS Globalink.</span></em></p><p class="fine-print"><em><span>Jack Creeggan receives funding from MITACS Globalink, Quebec Centre for Biodiversity Science, Concordia University, and NSERC-CREATE in Leadership in Environmental and Digital innovation for Sustainability (LEADS).</span></em></p><p class="fine-print"><em><span>Megan M. Joyce receives funding from MITACS Globalink, Quebec Centre for Biodiversity Science, Concordia University, and NSERC-CREATE in Leadership in Environmental and Digital innovation for Sustainability (LEADS).</span></em></p><p class="fine-print"><em><span>Mikaela Gerwing receives funding from Miriam Aaron Roland Graduate Fellowship, Concordia University, and NSERC - CGS M and CREATE in Leadership in Environmental and Digital innovation for Sustainability (LEADS).</span></em></p><p class="fine-print"><em><span>Stephanie Eccles receives funding from FRQSC and NSERC‐CREATE in Leadership in Environmental and Digital innovation for Sustainability (LEADS).</span></em></p>A community of macaques in Japan has a high rate of disabled individuals who survive with behavioural flexibility and maternal care. Globally, primate disabilities are often related to human causes.Sarah E. Turner, Associate Professor, Geography, Planning and Environment, Concordia UniversityBrogan M. Stewart, PhD Student in Environmental Science, Concordia UniversityJack Creeggan, Master's Student in Geography, Planning, and Environment, Concordia UniversityMegan M. Joyce, PhD Student in the Department of Geography, Planning and Environment, Concordia UniversityMikaela Gerwing, Wildlife Conservation Biologist and PhD Student, Concordia UniversityStephanie Eccles, PhD Candidate, Department of Geography, Planning, and Environment, Concordia UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2220062024-02-15T13:15:55Z2024-02-15T13:15:55ZThe UK’s tiny houses are woefully ill-prepared for an ageing population<figure><img src="https://images.theconversation.com/files/574631/original/file-20240209-30-kbpzmh.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">An artist impression of a later living project that prioritises accessibility and adaptability.</span> <span class="attribution"><span class="source">Faye Sedgewick</span>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span></figcaption></figure><p>With babies born in the 21st century expected to live, on average, <a href="https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages">to 100</a>, by 2050, one in four people in the UK will be over 65. And they will all need somewhere to live that is <a href="https://ageing-better.org.uk/sites/default/files/2023-08/finding-the-right-place-to-grow-older.pdf">suited</a> to their needs. Most adults in later life <a href="https://ageing-better.org.uk/news/todays-children-reach-retirement-age-ill-health-and-disability">experience</a> some form of ill health, such as arthritis, cognitive impairment, heart problems or issues with hearing and vision. </p>
<p>The problem is that the UK housing stock is nowhere near ready to cater to this need. Only 9% of British homes meet basic <a href="https://theconversation.com/what-does-a-building-need-to-call-itself-accessible-and-is-that-enough-217278">accessibility</a> standards. </p>
<p>In 2023, over one in five people in the UK <a href="https://commonslibrary.parliament.uk/research-briefings/cbp-9602/">were living with a disability</a>. And yet, <a href="https://www.habinteg.org.uk/latest-news/wheelchair-users-subjected-to-decadeslong-wait-for-new-accessible-housing-2004/">there were more than 20,000 people</a> on English local authority waiting lists for wheelchair and accessible homes. Some people have been waiting for decades. Demand is far outstripping supply. </p>
<p>This matters not just to the people whose lives are impacted by ill-suited homes. Our <a href="https://www.youtube.com/watch?v=gyiU3Jrjjic&t=3s">research</a> shows that suitable housing not only supports health and wellbeing, but also plays a crucial role in reducing health inequalities and alleviating the long-term burden on health and social care systems. Every £1 invested in preventative home improvement measures <a href="https://ageing-better.org.uk/resources/homes-health-and-covid-19?gad_source=1&gclid=Cj0KCQiAn-2tBhDVARIsAGmStVlj7IR7OBMBy6q_BuG7WFM7J85eRjd657Ryafsn4BgIw8XHjkXUdrgaApeVEALw_wcB">can save</a> up to £7 in healthcare costs. </p>
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<h2>The impact of poor housing</h2>
<p>The UK builds the smallest new houses in the western world. And size matters: the smaller the house, <a href="https://www.habinteg.org.uk/living-not-existing-the-economic-social-value-of-wheelchair-user-homes/">the more difficult</a> it is for those people with disabilities to move around and live fulfilled lives. </p>
<p>Space limitations can lead to <a href="https://www.architectsjournal.co.uk/news/step-free-access-to-all-homes-under-new-government-accessibility-rules#:%7E:text=The%20proposal%20will%20ask%20for,Dwellings'%20M4(1).">all kinds of problems</a>. Cramped entrance lobbies and hallways make coming and going difficult. Bathrooms located on upper floors are not accessible to people with mobility difficulties. Those located on the ground floor are often too small to accommodate disabilities. </p>
<p>The World Health Organisation has <a href="https://www.who.int/news/item/26-11-2018-housing-impacts-health-new-who-guidelines-on-housing-and-health#:%7E:text=The%20quality%20of%20housing%20has,including%20tuberculosis%2C%20influenza%20and%20diarrhoea.">long highlighted</a> quite how much this compromises people’s ability to cater to their personal hygiene and care needs. On a societal level, it also has severe consequences for the healthcare system. As journalists Melissa York and Georgia Lambert <a href="https://www.thetimes.co.uk/article/how-bad-homes-cost-nhs-1-4bn-times-health-commission-08zpsdpvn#:%7E:text=Poor%20quality%20housing%20costs,%C2%A34%20in%20health%20benefits.">put it</a> in 2023:</p>
<blockquote>
<p>Poor quality housing costs the NHS £1.4 billion a year, yet the relationship between housing and health is rarely acknowledged.</p>
</blockquote>
<p>Older adults, and those individuals with disabilities, <a href="https://www.health.org.uk/news-and-comment/blogs/improving-hospital-discharge-in-england-the-case-for-continued-focus">are often forced</a> to stay in the hospital longer than they need to, when their homes are unsuitable to their health needs. Pundits and experts alike have repeatedly warned that the UK’s <a href="https://theconversation.com/why-care-workers-are-feeling-less-valued-and-leaving-the-sector-after-the-pandemic-169961">social care</a> system is <a href="https://www.standard.co.uk/news/politics/england-government-nhs-age-uk-department-of-health-and-social-care-b1076797.html">at breaking point</a>. Poor housing is routinely cited as a major cause.</p>
<figure class="align-center ">
<img alt="A blurred image of a hospital waiting room." src="https://images.theconversation.com/files/574624/original/file-20240209-30-ftovcf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/574624/original/file-20240209-30-ftovcf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=394&fit=crop&dpr=1 600w, https://images.theconversation.com/files/574624/original/file-20240209-30-ftovcf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=394&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/574624/original/file-20240209-30-ftovcf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=394&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/574624/original/file-20240209-30-ftovcf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=495&fit=crop&dpr=1 754w, https://images.theconversation.com/files/574624/original/file-20240209-30-ftovcf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=495&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/574624/original/file-20240209-30-ftovcf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=495&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">‘Poor quality housing costs the NHS £1.4 billion a year.’</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/blur-image-inside-hospital-407772616">Shutterstock</a></span>
</figcaption>
</figure>
<h2>Why we need supportive housing design</h2>
<p>Built environment professionals, including architects, stress the importance of <a href="https://www.housinglin.org.uk/_assets/Resources/Housing/OtherOrganisation/Inclusive-Living-ageing-adaptations-and-futre-proofing-home.pdf">reimagining</a> housing design by establishing Part M Clause 2 (category 2) of the Building Regulations as the baseline to better support healthy ageing. In practical terms, this means <a href="https://www.researchgate.net/publication/336832933_The_Role_of_Housing_Design_in_Achieving_Aging_in_Place_in_China">creating homes</a> that are accessible and easily adaptable. </p>
<p>This means walls that can be easily be moved or removed to accommodate changing mobility requirements, or floors and walls equipped to support hoists and grab rails. A 90-year-old great-grandmother can live independently if her home features wide doorways, no-step entrances and a walk-in shower with grab bars. </p>
<figure class="align-center ">
<img alt="A graphic of internal layouts of a building." src="https://images.theconversation.com/files/574632/original/file-20240209-20-kbpzmh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/574632/original/file-20240209-20-kbpzmh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=644&fit=crop&dpr=1 600w, https://images.theconversation.com/files/574632/original/file-20240209-20-kbpzmh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=644&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/574632/original/file-20240209-20-kbpzmh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=644&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/574632/original/file-20240209-20-kbpzmh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=809&fit=crop&dpr=1 754w, https://images.theconversation.com/files/574632/original/file-20240209-20-kbpzmh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=809&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/574632/original/file-20240209-20-kbpzmh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=809&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Internal spaces that meet the Part M Clause 2 (category 2) of the Building Regulations requirements.</span>
<span class="attribution"><span class="source">Faye Sedgewick</span>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span>
</figcaption>
</figure>
<p>Most people think that implementing these changes is costly. But actually, while more space is needed for a home to be made truly accessible and adaptable, the associated building costs are only <a href="https://prod.housing.org.uk/globalassets/files/supply/home-submission-dluhc-inquiry-2023-disabled-people-in-the-housing-sector.pdf">marginally</a> higher. Reinforced walls and floors or wider doorways can result in minimal additional expenses during the construction phase.</p>
<p>Introducing this kind of feature can, in fact, help to <a href="https://parliamentlive.tv/event/index/4f857c64-1fbf-49ea-9534-677301ea97cd?in=17:10:50&_gl=1*dymd2y*_ga*MTcyNzI5MjYuMTcwNzIxODA0Ng..*_ga_L0NJWDWMGN*MTcwNzIxODA0NS4xLjEuMTcwNzIxODA1NS41MC4wLjA.">level up standards</a> across the UK, which in turn can promote long-term cost effectiveness. </p>
<p>The <a href="https://www.ribaj.com/buildings/john-morden-centre-mae-architects-elderly-care-social-centre">John Morden Centre</a> in Blackheath, London, illustrates how thoughtful design can support older residents’ <a href="https://bristoluniversitypress.co.uk/age-friendly-cities-and-communities">quality of life</a>. Designed by London-based architectural practice Mae Architects, this elderly daycare facility is housed in a sequence of red brick pavilions featuring <a href="https://www.researchgate.net/publication/371698416_Architecture_and_ageing_lessons_learned_from_a_cohousing_project">communal spaces</a> for <a href="https://www.ssoar.info/ssoar/bitstream/handle/document/87663/ssoar-up-2022-4-lewis_et_al-Ageing_in_Place_and_Urban.pdf?sequence=1&isAllowed=y">social interaction</a>, activity areas and gardens. </p>
<p>In 2023, it won the Royal Institute of British Architects’s Stirling prize for design choices, the institute said, that “sensitively anticipate the varied needs, abilities and disabilities of users”. These choices include level door thresholds, concealed handrails, walkways with built-in seating and floor edging with high-contrast patterns that provide, the institute says, “dementia-friendly wayfinding”. This <a href="https://www.researchgate.net/publication/336832933_The_Role_of_Housing_Design_in_Achieving_Aging_in_Place_in_China">supportive environment</a> fosters independence and wellbeing in its users.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
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<p>Of course, ideas need to be put into practice for them to really change the way people live. In construction terms, this means that supportive design needs to be enshrined in building regulations and the wider housing policy.</p>
<p>Right now, <a href="https://www.gov.uk/government/publications/access-to-and-use-of-buildings-approved-document-m">UK building regulations</a> require builders to make reasonable housing provision for a wide range of occupants, including older people, those with reduced mobility and <a href="https://www.habinteg.org.uk/latest-news/more-wheelchair-user-homes-could-save-public-purse-millions-2248/">some wheelchair users</a>. This includes guidance for wider corridors and door opening widths, larger room sizes and provision of a ground floor wet room etc. </p>
<p>But this is not compulsory. The UK’s reliance on mass housebuilders to fulfil its housing needs explains why the government <a href="https://www.tandfonline.com/doi/full/10.1080/19491247.2019.1644020">has been reluctant</a> to make this more than a recommendation. </p>
<p>Making such design regulations compulsory would see the housing industry effectively contribute to reducing the burden on the NHS and our social care system. <a href="https://eprints.whiterose.ac.uk/163322/3/Final%200619-Jingjing-Wang_HS-journal-paper_4nd-revision.pdf">It would improve</a> the quality of life for older and disabled people at home. And it would promote independent living for longer. <a href="https://cp.catapult.org.uk/report/new-report-charts-way-forward-for-healthy-ageing/">A residential care place</a> can cost between £50-£90k for an average two-and-a-half-year stay, or £380-£700 per week. </p>
<p>Enabling individuals to remain in their homes for extended periods would result in savings for both residents and local councils. This is particularly crucial considering the mounting pressures confronting local authorities, many of which are teetering on the edge of <a href="https://www.theguardian.com/society/2023/aug/28/at-least-26-english-councils-at-risk-of-bankruptcy-in-next-two-years">bankruptcy</a> due to the escalating demand for <a href="https://www.theguardian.com/uk-news/2024/jan/28/from-social-care-to-homelessness-what-are-the-cost-pressures-facing-english-councils">social care services</a>.</p>
<p>Architects talk about <a href="https://www.architecture.com/knowledge-and-resources/resources-landing-page/a-home-for-the-ages-planning-for-the-future-with-age-friendly-design">resilient housing</a> to describe homes that are built for the long-term with sustainable healthy ageing in mind. </p>
<p>Currently, the homes on most residential streets in the UK are not built for the long-term. The construction industry prioritises single-use homes and operates on a demolition-first mentality. </p>
<p>People’s needs change as they get older. But ageing and disability should not be barriers to health, wellbeing and everyday activities within the home. The homes we live in should allow us all to thrive and contribute to society, at every age.</p><img src="https://counter.theconversation.com/content/222006/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Faye Sedgewick receives funding from Innovate UK and is a member of the Architects Registration Board.</span></em></p><p class="fine-print"><em><span>Paul Jones receives funding from Innovate UK, Research England, AHRC</span></em></p>By 2050, 25% of the UK population will be over 65, yet only 9% of the country’s current homes meet basic accessibility standards.Faye Sedgewick, KTP Research Associate in Architecture, Northumbria University, NewcastlePaul Jones, Professor of Architecture, Northumbria University, NewcastleLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2220542024-02-13T19:31:34Z2024-02-13T19:31:34ZShowing love on Valentine’s Day by embracing disability<figure><img src="https://images.theconversation.com/files/574603/original/file-20240209-16-r7k1o3.jpg?ixlib=rb-1.1.0&rect=110%2C0%2C7238%2C4912&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Stereotypes often mean people with disabilities are told to wait and delay their engagement in any romantic or sexual experiences.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Valentine’s Day is a time when love and intimacy are celebrated with fervor. Yet, the challenges some face in this regard are not often recognized. In particular, people with disabilities face discrimination and obstacles when seeking love, affection and sexual fulfillment.</p>
<p>People with disabilities often contend with persistent stereotypes when it comes to their love lives. A lack of comprehensive and accessible sex education also leaves people with disabilities ill-equipped to navigate the complexities of relationships and intimacy.</p>
<p>At the University of Calgary’s <a href="https://www.disabilitysexualitylab.com/">Disability and Sexuality Lab</a>, we are working to address these challenges. Our team has undertaken a comprehensive series of interviews with individuals living with disabilities, delving into their personal journeys with love, romance and sexuality. </p>
<p>These conversations reveal the complex realities they face in their quest for intimate connections and underscore the urgent need for greater awareness, and inclusivity within the intersection of disability and sexuality.</p>
<h2>Stereotypes about disability and sexuality</h2>
<p>Individuals with disabilities frequently confront a <a href="https://theconversation.com/people-with-disability-face-barriers-to-sexual-and-reproductive-health-care-new-recommendations-are-only-the-start-206746">multitude of stereotypes</a> that limit their opportunities to form intimate relationships and have sex. These perceptions can deeply affect their experiences and how society treats the topic of disability and sexuality.</p>
<p>Initially, there’s a <a href="https://doi.org/10.3109/09638280903419277">pervasive stereotype</a> that portrays disabled people as lacking sexual desires or being incapable of making good decisions regarding their intimate lives. This view unfairly categorizes people with disability as a “danger” to the community, fostering unnecessary fear and discrimination. Such a narrative not only marginalizes their experiences but also unjustly strips them of their rights to make personal decisions about their bodies and relationships.</p>
<p>Simultaneously, they are subjected to <a href="https://doi.org/10.1177/1363460716688680">infantilization and de-sexualization</a>. This process where their capacity for adult relationships and sexuality is either ignored or denied, undermines their autonomy and contributes to a broader societal narrative. It fails to recognize disabled people as fully rounded individuals with the same spectrum of desires and needs for intimacy as anyone else.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man and woman communicate using sign language." src="https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.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">Stereotypes and perceptions can deeply affect how broader society views disability and sexuality.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Being told to wait</h2>
<p>Infantilization often means people with disabilities are told to wait and delay their engagement in any romantic or sexual experiences.</p>
<p><a href="https://www.taylorfrancis.com/chapters/edit/10.4324/9781003163329-57/intersection-sexuality-intellectual-disabilities-alan-santinele-martino">Our comprehensive interviews with 46 adults who have intellectual disabilities</a> in Ontario highlighted how participants were often advised that they should defer sexual activity until their late 30s, 40s, and in some cases, even their 50s. </p>
<p>This guidance, ostensibly for their protection, underscores a broader societal issue where people with disabilities are not afforded the same autonomy to explore their sexuality compared to those without disabilities.</p>
<p>For instance, Randy, a 39-year-old man with a mental disability, told us he was advised not to pursue intimate relationships. “My mother told me I am not ready,” he said. Often, people with disabilities, especially those with intellectual disabilities, are told to wait.</p>
<p>This represents further the perceived notion that <a href="https://doi.org/10.1080/10714413.2012.687241">people with disabilities are not knowledgeable</a> about their own sexuality and intimate lives. For instance <a href="https://doi.org/10.1007/s12119-023-10185-w">Priscilla, a 43-year-old bisexual woman, said:</a> </p>
<blockquote>
<p>“When you have a developmental disability, people think that you don’t know what you’re talking about. Or when you say I’m bisexual or gay, whatever, they think that you don’t actually know what it means.”</p>
</blockquote>
<h2>Sex education inaccessible and inadequate</h2>
<p>In ensuring individuals are informed about their options in terms of sex, sexuality and gender, sex education is often where these conversations begin. Unfortunately sex education is often delivered in <a href="https://doi.org/10.1007/s10508-023-02755-8">inaccessible and ineffective ways</a> to people with disabilities, particularly those who are 2SLGBTQ+. This is what we found in our other research project about the intimate lives of 31 2SLGBTQ+ individuals with intellectual and/or developmental disabilities in Alberta, Canada. </p>
<p>Sex education is often delivered in ways that focus on heterosexual and cisgender experiences. <a href="https://doi.org/10.1007/s10508-023-02755-8">Aubrey, a 30-year-old queer trans man said</a>: </p>
<blockquote>
<p>“You know, for myself as a gender diverse person, I really would have benefited from that [sex education], because I hadn’t even known about that possibility until much later in my life.”</p>
</blockquote>
<p>Partly due to this lack of education, studies have shown that people with disabilities experience greater vulnerability. The <a href="https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-talks-about">rates of sexual abuse</a> are higher among disabled people compared to non-disabled people. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman sits on the lap of another woman in a wheelchair. They look at each other lovingly." src="https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.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">Disabled 2SLGBTQ+ people often face overlapping forms of discrimination.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>2SLGBTQ+ disabled people being left behind</h2>
<p>Individuals with disabilities who are also 2SLGBTQ+ often find themselves facing multiple forms of discrimination, including ableism, homophobia and transphobia. </p>
<p>Yet, our interviews with 2SLGBTQ+ adults with developmental and/or intellectual disabilities reveal not just the barriers these individuals face but also their profound resilience and desire for love. For instance <a href="https://doi.org/10.1080/00918369.2023.2276320">Tracey, a 19-year-old gender fluid person, said</a>: </p>
<blockquote>
<p>“I just wish there were more like spaces where disabled people could also enter because you know, when you also think of like, people who are physically disabled, they can’t go out clubbing. They physically can’t, then so it’s like, there’s not many activities, there’s not many ways for us to engage in our own community.”</p>
</blockquote>
<p>Our research shows significant gaps in information and conversations about disability and romance, emphasizing the necessity for accessible education, resources and spaces. Recent 2SLGBTQ+ rights challenges, like <a href="https://theconversation.com/albertas-new-policies-are-not-only-anti-trans-they-are-anti-evidence-222579">Alberta’s parental rights policies</a>, underscore the urgency of challenging new transphobic policies. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/albertas-new-policies-are-not-only-anti-trans-they-are-anti-evidence-222579">Alberta's new policies are not only anti-trans, they are anti-evidence</a>
</strong>
</em>
</p>
<hr>
<h2>Disabled activists push back</h2>
<p>Valentine’s Day, with its emphasis on love and connection, brings to light the importance of inclusivity. It’s a fitting moment to reflect on how everyone desires to love and be loved. The work of disabled activists like Andrew Gurza, host of the podcast <a href="http://www.andrewgurza.com/podcast">Disability after Dark</a>, and Eva Sweeney, creator of <a href="https://www.crippingupsexwitheva.com/">Cripping up Sex with Eva</a>, is particularly illuminating. They courageously open up conversations about disability and sexuality, challenging norms and pushing the boundaries of what’s often considered a taboo subject.</p>
<p>In a simple yet profound expression, a young man with Down Syndrome shared his insight, saying, <a href="https://hollandbloorview.ca/sites/default/files/2021-04/Presentation%20Slides-%20Talk%203%20Speaker%201%20Dr.%20Alan%20Martino_0.pdf">“love is natural, we all love.”</a> This statement serves as a powerful reminder, especially on Valentine’s Day — a time often saturated with conversations about sex, intimacy and romantic connections. It’s a period that underscores the significance of making sure everyone feels seen and included.</p>
<p>Their efforts highlight a critical message: The more we talk about it, the less of a taboo topic it becomes. </p>
<p><em>Eleni Moumos, an undergraduate student in Psychology minoring in Disability Studies at the University of Calgary, co-authored this article.</em></p><img src="https://counter.theconversation.com/content/222054/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alan Santinele Martino receives funding from the Canadian Institutes of Health Research.</span></em></p>Individuals with disabilities frequently confront stereotypes that limit their opportunities to form intimate relationships and have sex.Alan Santinele Martino, Assistant Professor, Community Rehabilitation and Disability Studies, University of CalgaryLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2218612024-01-30T23:08:05Z2024-01-30T23:08:05ZHere are some dos and don’ts to help tackle ableism<iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/here-are-some-dos-and-donts-to-help-tackle-ableism" width="100%" height="400"></iframe>
<p>When we met each other in Grade 11 in Alberta, we were far from the typical high school success story. Heidi has cerebral palsy and was seen as too disabled for regular schools, and Michelle was a chronic truant and an activist. </p>
<p>Soon, we became friends and made a pact to get our doctorates, which we did. Over the past three decades, we have researched, taught classes and given talks on disability and ableism. </p>
<p>Throughout the course of our careers and lived experiences, we have seen the daily ableism people living with disabilities contend with. As professors of education and disability ethics, we have put together the following list of dos and don’ts. </p>
<h2>The dos</h2>
<p><strong>1. Listen to feedback even if you’d rather not.</strong>
Giving people feedback on <a href="https://www.talilalewis.com/blog/working-definition-of-ableism-january-2022-update">ableism</a> isn’t our idea of a good time, but we’d like a society that isn’t ableist. Try to be mindful and understanding when someone tells you that your <a href="https://theconversation.com/disability-and-dignity-4-things-to-think-about-if-you-want-to-help-198993">words or actions are not helpful</a>.</p>
<p><strong>2. Listen to how people identify themselves.</strong>
Some disabled people use <a href="https://doi.org/10.1111/j.1755-618X.2001.tb00967.x">identity-first language</a>: “I am disabled.” Others might use people-first language: “I am a person with disabilities.” This is a personal and political choice. The same goes for titles. When we teach, we use Dr. Janz instead of Heidi because it is often challenging for students and colleagues to see Dr. Janz as having academic expertise.</p>
<p><strong>3. Think about how often disability is used to denote something negative or as an insult.</strong>
Here are a few we’ve heard recently: blind to it, blindspot, deaf to it, schizo, manic, lame or when talking about a person who was challenging organizational norms as “definitely autistic.” </p>
<p><strong>4. Think about how you can be more inclusive of people with disabilities.</strong>
Excluding or minimizing the experiences of disabled individuals often leads to <a href="https://doi.org/10.1377/hlthaff.2022.00520">flawed research</a>, policy and <a href="https://www.c-q-l.org/resources/articles/most-disability-professionals-are-ableist/">education</a> of future professionals. It’s essential to integrate critical work by disability scholars for ethically sound, and socially relevant research and education.</p>
<p><strong>5. Commit to fair compensation.</strong>
We can’t tell you how many times it has been assumed that Michelle should be paid but that Heidi is happy as a clam to do work for free. Disabled people deserve compensation for their work like everyone else. </p>
<p>Their costs are often far higher than those of someone who does not travel with a personal care attendant and needs to use accessible transportation and accommodation — <a href="https://www.cbc.ca/news/canada/calgary/canadian-cities-accessibility-disabilities-research-calgary-ottawa-vancouver-1.7043923">when it is available</a>. But even if they didn’t need any of these things, the assumption disabled people should work for less or for free is downright insulting.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/working-from-home-has-worked-for-people-with-disability-the-back-to-the-office-push-could-wind-back-gains-209870">Working from home has worked for people with disability. The back-to-the-office push could wind back gains</a>
</strong>
</em>
</p>
<hr>
<p><strong>6. Challenge the notion that people are better off dead.</strong>
Despite the opposition of major disability rights groups in Canada and concerns expressed by <a href="https://spcommreports.ohchr.org/TMResultsBase/DownLoadPublicCommunicationFile?gId=26002">United Nations special rapporteurs on the rights of persons with disabilities</a>, Canada promised to expand Medical Assistance in Dying (MAID) to <a href="https://www.thestar.com/news/investigations/surge-in-medically-assisted-deaths-under-canada-s-maid-program-outpaces-every-other-country/article_29028f96-bc6b-11ee-8f67-03bf29ac7d34.html">people with mental health challenges</a>. </p>
<p>The expansion of MAID to include individuals with mental illness is <a href="https://www.cbc.ca/news/politics/medical-assistance-in-dying-mental-illness-delay-1.7098313">likely to be postponed</a> following more testimonies from mental health experts and advocates arguing that MAID as a solution for mental illness is problematic, especially considering the high number of people who are unhoused, living in poverty and unable to access supports including mental health and addiction treatment services. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/liks62ZcMK0?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Heidi Janz providing expert testimony on MAID and ableism to Parliament’s Standing Committee on Justice and Human Rights in November 2020.</span></figcaption>
</figure>
<p><strong>7. Understand the impact of your government’s policies on disabled people.</strong>
The UN estimates that about <a href="https://www.youtube.com/watch?v=liks62ZcMK0">9.7 million</a> people with disabilities are displaced because of conflict and war. The late associate professor of English, <a href="https://www.penguinrandomhouse.ca/books/734125/landbridge-by-y-dang-troeung/9781039008762">Y-Dang Troeung</a>, and gender, race, sexuality and social justice professor <a href="https://www.dukeupress.edu/the-right-to-maim">Jasbir Puar</a> are two scholars who examine how ableism, racism and geopolitics connect.</p>
<p><strong>8. Think about who you see as leaders and why.</strong>
Democracy is founded on representation. <a href="https://www.ctvnews.ca/canada/statcan-8-million-people-27-of-canadians-have-at-least-1-disability-1.6675303">Twenty-seven per cent of Canadians identify as having a disability</a>. Consider what government, workplaces, health care, education and the justice system would look and feel like if a commitment to dismantling ableism was a priority.</p>
<h2>The don’ts</h2>
<p><strong>1. Don’t tell disabled people you are their voice.</strong>
Watch the power tripping that comes with assuming you are a voice for a group you are not a part of, including disability. Is it that you are speaking for the voiceless? Or for people with clear voices about what needs to change — based on their lived experience and expertise — who are being ignored? Voices come in many forms — text, story, art, music, screams of frustration, love and laughter. </p>
<p>Similarly, don’t ask a disabled person to speak for all disabled people. Not all disabled people will agree with each other, just as not all individuals in any group share the same opinions. Learn to listen. </p>
<p><strong>2. Don’t ask disabled people and other structurally marginalized groups to be patient.</strong>
Consider what it is like for disabled people asking for the basics of life, such as accessible housing, education, health care and food security, to constantly be told to be patient while others decide what they think is best for you. It’s important to clarify that the issue does not lie with frontline staff, who are often overstretched and underpaid, but rather with the fair distribution of public resources to include disabled people.</p>
<p><strong>3. Don’t assume disabled people aspire to be your inspiration.</strong>
Telling someone you don’t know how they do it or that you just wouldn’t cope if disabled might seem harmless, but consider how such comments might sound to a disabled person. How should a person, who might view their life as pretty enjoyable, respond to a comment that assumes it is actually pretty awful? </p>
<p><strong>4. Don’t assume you know what a person’s quality of life is.</strong>
Dr. Janz, for example, always needs an advocate with her when in the hospital because, too often, those paid to care for her assume she wants to be a DNR (do not resuscitate). <a href="https://www.telegraph.co.uk/news/2021/06/09/patients-mental-illness-learning-disabilities-given-do-not-resuscitate/">Ableism is life-threatening</a>.</p>
<p><strong>5. Don’t displace your discomfort onto disabled people.</strong>
It is okay to be uncomfortable when you can’t understand someone’s speech, or you don’t understand why they are twirling or rocking back and forth. What isn’t okay is to blame disabled people for your discomfort. </p>
<p>Ableism goes beyond individual fear or prejudice. It influences who we see as having a life worth living and who is seen as a burden. That, in turn, impacts our practices and policies. We all have a role to play in challenging ableism, which may sometimes leave us feeling awkward or unsure if we’re doing and saying the right things. But, to our knowledge being awkward isn’t deadly. Ableism too often is.</p><img src="https://counter.theconversation.com/content/221861/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>People with disabilities contend with daily challenges and ableism. Here are some dos and don'ts to help you be more mindful of those living with a disability.Michelle Stack, Associate Professor, Department of Educational Studies, University of British ColumbiaHeidi L. Janz, Associate Adjunct Professor of Disability Ethics, John Dossetor Health Ethics Centre, University of AlbertaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2063602024-01-30T20:15:08Z2024-01-30T20:15:08ZSchools have a long way to go to offer equitable learning opportunities, especially in French immersion<figure><img src="https://images.theconversation.com/files/537617/original/file-20230716-25-rv538b.jpg?ixlib=rb-1.1.0&rect=0%2C89%2C6000%2C3538&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">In a research study on the accessibility of French immersion, one parent was told she faced a three-year wait to access reading supports for her child. </span> <span class="attribution"><span class="source">(Andrew Ebrahim/Unsplash)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/schools-have-a-long-way-to-go-to-offer-equitable-learning-opportunities-especially-in-french-immersion" width="100%" height="400"></iframe>
<p>The Ontario Human Rights Commission’s <a href="https://www.ohrc.on.ca/en/right-to-read-inquiry-report">Right to Read report</a>, published last February, called for changes in the province’s educational system. The commission found shortcomings in how schools support students with special education needs. </p>
<p>We found similar trends in our <a href="https://uottawa.scholarsportal.info/ottawa/index.php/ILOB-OLBI/article/view/6618/5553">interview-based study</a> on the accessibility of French immersion for students with special education needs from low-income communities in Toronto. We interviewed eight mothers with diverse socio-economic status, home language and immigration backgrounds on their experiences with the French immersion program. </p>
<p>According to the Right to Read report’s <a href="https://www.ohrc.on.ca/en/right-to-read-inquiry-report/appendix-1-list-recommendations">recommendations</a>, children need accessible, effective learning assessments, as well as evidence-based interventions that occur in a timely manner. </p>
<p>These interventions include explicit, systematic programs that focus on <a href="https://www.readingrockets.org/reading-101/reading-and-writing-basics/phonics-and-decoding">phonics (teaching the relationships between letters and the sounds of spoken language) and decoding (applying knowledge of letter-sound relationships to written words, or “sounding out”)</a>, <a href="https://www.sciencedirect.com/topics/social-sciences/metalinguistic-awareness">metalinguistic awareness</a> (a larger awareness of language, including an ability to reflect on it) and other skills <a href="https://doi.org/10.1002/rrq.99">that support reading accuracy and fluency</a>). </p>
<p>Research has highlighted difficulties accessing support for students with special education needs <a href="https://doi.org/10.1075/jicb.20012.kay">in French immersion programs</a>. As we also heard in our study, parents of children with students with special education needs from low-income communities in Toronto faced barriers accessing resources for their children.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/reading-struggles-dont-wait-to-advocate-for-your-child-130986">Reading struggles? Don't wait to advocate for your child</a>
</strong>
</em>
</p>
<hr>
<figure class="align-center ">
<img alt="A school building." src="https://images.theconversation.com/files/571939/original/file-20240129-21-apeyf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/571939/original/file-20240129-21-apeyf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/571939/original/file-20240129-21-apeyf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/571939/original/file-20240129-21-apeyf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/571939/original/file-20240129-21-apeyf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/571939/original/file-20240129-21-apeyf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/571939/original/file-20240129-21-apeyf.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">A report published by the TDSB found students without special needs represent 90 per cent of students in French immersion and 78 per cent of students in the board overall.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Marginalized students underrepresented</h2>
<p>French immersion programs have become increasingly popular <a href="https://journalhosting.ucalgary.ca/index.php/cjnse/article/view/74139">across Canada</a>, since students who learn both English and French in school may <a href="https://muse.jhu.edu/article/228709/pdf">benefit from increased intercultural awareness</a>, easier travel throughout Canada, better access to bilingual jobs as well as potential <a href="https://doi.org/10.3138/cmlr.63.5.605">developmental and social benefits</a>.</p>
<p>There is a <a href="https://globalnews.ca/news/4922887/french-immersion-school-canada-demand-teachers/">high demand</a> for French immersion in Canada, and the program is often perceived as <a href="https://doi.org/10.1080/01434632.2020.1865988">an elitist system</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/french-immersion-and-other-regional-learning-programs-smart-choice-for-your-kids-or-do-they-fuel-inequity-195184">French immersion and other regional learning programs: Smart choice for your kids, or do they fuel inequity?</a>
</strong>
</em>
</p>
<hr>
<p>In the <a href="https://www.tdsb.on.ca/Portals/0/docs/TDSB%20French%20Programs%20Review%20Mar082019.pdf">Toronto District School board (TDSB) French immersion report released in 2019</a>, marginalized students are underrepresented in its immersion programs. For example, the report — based on registration and census information — noted that in grades 7-8:</p>
<ul>
<li><p>49 per cent of students identify as white in French immersion and 30 per cent in the board overall;</p></li>
<li><p>students without special needs represent 90 per cent of students in French immersion and 78 per cent of students in the board overall;</p></li>
<li><p>Students whose family income is $100,000 and over represent 66 per cent of students in French immersion and 47 per cent of students in the board overall;</p></li>
<li><p>Children from families who speak English at home represent 63 per cent of French immersion classes and 35 per cent of the board overall.</p></li>
</ul>
<h2>Reading struggles</h2>
<p>Emily (not her real name) is one of the mothers who participated in our study. She has seen the <a href="https://www.youtube.com/watch?v=77cz9iUeDaY&t=82s">high cost of disability in our school systems</a>. With her permission, we have shared her story below to illustrate her family’s experience in a French immersion program.</p>
<p>Emily enrolled all of her three children in a French immersion program. Emily’s eldest child excelled in immersion, and continued to study French into university. However, Emily’s two youngest were struggling to read in French. The teachers assured her that her children would catch up in time and there was no need to worry. </p>
<p>Shockingly for Emily, once her middle child reached Grade 3, she was suddenly informed that her child was reading at a kindergarten level. </p>
<p>However, the wait to be assessed was approximately three years — meaning this child might be in Grade 6 before they received any formal assessment and intervention support. </p>
<p>At the suggestion of the school’s administration, Emily agreed to pay $3,500 for an external evaluation. She said about the experience:</p>
<blockquote>
<p>“I’ll never forget it, having that SST (school support team) meeting. I’m in front of the psychologist and all these different people and I literally lost control. The head of special education, she said, ‘It’s okay.’ I’m like, ‘I’m not crying because my daughter has a learning disability. I’ve come to terms with that.’ I said, ‘I’m crying because I had to pay $3,500 dollars …’… How many kids are falling through the cracks?’ That was very disconcerting for me. I was heartbroken.”</p>
</blockquote>
<figure class="align-center ">
<img alt="A hand writing on French homework." src="https://images.theconversation.com/files/540522/original/file-20230801-17-ko6dda.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/540522/original/file-20230801-17-ko6dda.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/540522/original/file-20230801-17-ko6dda.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/540522/original/file-20230801-17-ko6dda.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/540522/original/file-20230801-17-ko6dda.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/540522/original/file-20230801-17-ko6dda.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/540522/original/file-20230801-17-ko6dda.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">
<figcaption>
<span class="caption">Schools have a long way to go to offer equitable learning opportunities for all students.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Insufficient special education support</h2>
<p>Even after spending an exorbitant amount of money, Emily found out the hard way that there wasn’t sufficient special education support in French immersion for her child. She ended up removing her middle child from the immersion program the next year. Emily’s middle child did get the support she needed in the English program.</p>
<p>This is just one example of the stories we heard in our research study on the accessibility of French immersion. </p>
<p>Emily’s question stayed with us throughout our work: How many students are falling through the cracks? </p>
<p>The truth is, we don’t really know. Based on the attrition rates in French immersion from the TDSB, it must be high. According to a <a href="https://www.tdsb.on.ca/Portals/0/docs/TDSB%20French%20Programs%20Review%20Mar082019.pdf">2019 report published by the TDSB,</a> from the early French immersion cohort where students start in senior kindergarten, approximately 70 per cent of the students have left the program by Grade 9.</p>
<h2>Need for early intervention</h2>
<p>In our study, one parent was told that her child couldn’t be assessed until Grade 3, which contradicts <a href="https://www.readingrockets.org/article/importance-early-intervention">evidence-based best practices</a> that call for early assessment and intervention. </p>
<p>Parents also said they often feel pressure to pay for expensive tutors, French summer camps and other language immersion opportunities so their children don’t fall behind. </p>
<p>They reported spending a lot of time supporting their children’s studies despite not speaking the language of instruction, and this ends up becoming an emotional and financial burden.</p>
<h2>Ensuring changes are implemented equitably</h2>
<p>Following the Right to Read inquiry, the Government of Ontario committed to sweeping change such as <a href="https://www.cbc.ca/news/canada/right-to-read-inquiry-report-literacy-ontario-1.6378408">mandating early literacy screening</a>. We have also seen a huge amount of <a href="https://www.idaontario.com/effective-reading-instruction/">professional learning</a> for teachers. Ensuring that positive change yielded by these approaches are effective in French immersion programs is critical. </p>
<p>We know that individual resilience and community support networks aren’t enough to combat systemic barriers. </p>
<p>We still have a long way to go if we want our school system to be an equitable learning opportunity for all students — particularly in immersion.</p><img src="https://counter.theconversation.com/content/206360/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Diana Burchell receives funding from the Social Sciences and Humanities Research Council of Canada (SSHRC).</span></em></p><p class="fine-print"><em><span>Becky Xi Chen receives funding from Social Sciences and Humanities Research Council of Canada (SSHRC).</span></em></p><p class="fine-print"><em><span>Elizabeth Kay-Raining Bird has received funding from SSHRC. </span></em></p><p class="fine-print"><em><span>Roksana Dobrin-De Grace receives funding from the Social Sciences and Humanities Research Council of Canada (SSHRC).</span></em></p>Parents in a study about the accessibility of French immersion programs discussed inadequate support for learning to read and feeling pressured to pay for expensive tutors.Diana Burchell, PhD Candidate in Developmental Psychology and Education, University of TorontoBecky Xi Chen, Professor, Department of Applied Psychology and Human Development, University of TorontoElizabeth Kay-Raining Bird, Professor Emeritus, School of Communication Sciences and Disorders, Dalhousie UniversityRoksana Dobrin-De Grace, PhD Student in Developmental Psychology, Toronto Metropolitan UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2200422024-01-30T00:54:24Z2024-01-30T00:54:24ZThere is overwhelming gender bias in the NDIS – and the review doesn’t address it<figure><img src="https://images.theconversation.com/files/570825/original/file-20240123-25-s61vs2.jpg?ixlib=rb-1.1.0&rect=0%2C1030%2C2663%2C2271&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://disabledandhere.files.wordpress.com/2019/10/dah-meeting03.jpg">Chona Kasinger/Disabled and Here Collection</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span></figcaption></figure><p>The <a href="https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis">review</a> of the National Disability Insurance Scheme (NDIS) released last month included welcome recommendations to better support First Nations people, understand culturally diverse concepts of disability and care, and advocacy for LGBTIQ+ people. The review acknowledges women with disability face barriers to access support and efforts to understand their experiences <a href="https://www.ndisreview.gov.au/sites/default/files/resource/download/NDIS-Review-Supporting-Analysis.pdf">need to be accelerated</a>. </p>
<p>As part of review feedback, key disability organisations said <a href="https://www.ndisreview.gov.au/sites/default/files/resource/download/NDIS-Review-Supporting-Analysis.pdf">a gender strategy</a> was needed.</p>
<p>Yet <a href="https://www.crikey.com.au/2023/12/18/ndis-ndia-review-women-disabilities/">the final recommendations remain largely silent on gender</a>, despite overwhelming gender inequality in the NDIS. This was also largely true of the <a href="https://disability.royalcommission.gov.au/publications/final-report">Disability Royal Commission recommendations</a>. </p>
<p>Here’s why change is needed.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/recommendations-to-reboot-the-ndis-have-finally-been-released-5-experts-react-215805">Recommendations to reboot the NDIS have finally been released. 5 experts react</a>
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<h2>To uphold women’s right to safety</h2>
<p>More than one-third of women with disability are likely to <a href="https://mspgh.unimelb.edu.au/research-groups/centre-for-health-equity/disability-and-health-unit/violence-against-people-with-disabilities#:%7E:text=They%20are%20twice%20as%20likely%20than%20women%20without%20disability%20to,7%25%20of%20men%20without%20disability">experience intimate partner violence</a> compared to 21% of women without disability, 15% of men with disability and 7% of men without disability. </p>
<p>The NDIS review places a strong emphasis on “safeguarding” participants and to this end, makes the <a href="https://www.thesaturdaypaper.com.au/news/politics/2024/01/13/the-hidden-risks-the-ndis-restructure">controversial recommendation</a> to use only registered providers (which some participants say will limit their choice and control). But when it comes to addressing violence and abuse disproportionately experienced by women with disability, the review doesn’t go much further than referencing the previously released <a href="https://disability.royalcommission.gov.au/publications/final-report">disability royal commission recommendations</a>.</p>
<p>Only three out of the 222 disability royal commission recommendations explicitly focus on women. These include the banning of non-therapeutic sterilisation (preventing some women with disability from getting pregnant), plans to develop action plans and adopting nationally consistent disability-inclusive definitions of family and domestic violence. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/unregistered-ndis-providers-are-in-the-firing-line-but-lots-of-participants-have-good-reasons-for-using-them-196375">Unregistered NDIS providers are in the firing line – but lots of participants have good reasons for using them</a>
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</p>
<hr>
<h2>To support women as participants, as well as carers</h2>
<p>Women with disability have significantly <a href="https://theconversation.com/women-make-up-half-the-disability-population-but-just-over-a-third-of-ndis-recipients-173747#:%7E:text=Australia's%20National%20Disability%20Insurance%20Scheme,participants%20are%20women%20and%20girls">lower NDIS participation rates</a>. </p>
<p>Women are also <a href="https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release">over-represented as carers</a> for people with disability. Half of all NDIS participants <a href="https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis">are children</a> and <a href="https://equityhealthj.biomedcentral.com/articles/10.1186/s12939-021-01571-7">nearly 90%</a> of primary carers for children are women. </p>
<p>Women are highly successful advocates for their children. Indeed, women’s advocacy for others has contributed to similar rates of access approval between <a href="https://data.ndis.gov.au/media/3862/download?attachment">male and female children up to the age of 14</a>.</p>
<p>Older applicants are encouraged and more likely to advocate for themselves. From age 15, the likelihood of NDIS access <a href="https://equityhealthj.biomedcentral.com/articles/10.1186/s12939-021-01571-7">is gendered</a>. Male access requests are <a href="https://data.ndis.gov.au/media/3862/download?attachment">approved at far higher rates</a> than females and applicants gendered “other”. This gap further widens with age. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1732994200273318206"}"></div></p>
<h2>To stop reproducing medical bias</h2>
<p>NDIS assessments rely on evidence from health-care professionals, which means the NDIS likely reproduces the <a href="https://theconversation.com/gender-bias-in-medicine-and-medical-research-is-still-putting-womens-health-at-risk-156495">gender biases of the medical system</a>.</p>
<p>On average, women wait <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9518795/#B17">two to five years longer than men to obtain a diagnosis</a> and studies repeatedly find <a href="https://pubmed.ncbi.nlm.nih.gov/9066458/">gendered differences</a> in how <a href="https://www.liebertpub.com/doi/pdf/10.1089/whr.2022.0052">symptoms are interpreted</a>. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/more-than-mental-illness-how-the-ndis-review-could-help-people-with-psychosocial-disability-219502">More than mental illness. How the NDIS review could help people with psychosocial disability</a>
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</em>
</p>
<hr>
<p>Many chronic conditions experienced predominantly by women can have <a href="https://journals.sagepub.com/doi/10.1177/17455057221103994">fluctuating symptoms</a>. The reviews’ attention to the <a href="https://theconversation.com/more-than-mental-illness-how-the-ndis-review-could-help-people-with-psychosocial-disability-219502#:%7E:text=The%20NDIS%20review%20recommends%20%E2%80%9Ca,people%20with%20severe%20mental%20illness.">episodic nature of psychosocial disability</a> (when mental illness is severe and disabling) is welcome, but episodic disability needs to be addressed more broadly. </p>
<p>Women are <a href="https://www.abs.gov.au/statistics/health/health-conditions-and-risks/health-conditions-prevalence/latest-release#:%7E:text=One%20in%20two%20(49.9%25%20or,52.3%25%20compared%20to%2047.4%25)">more likely than men to have at least one chronic health condition</a> and are <a href="https://www.aihw.gov.au/reports/chronic-disease/chronic-condition-multimorbidity/contents/what-is-multimorbidity-and-how-common-is-it">significantly more likely to experience two or more chronic conditions at once</a>. </p>
<p>Chronic health conditions with higher prevalence among women include <a href="https://equityhealthj.biomedcentral.com/articles/10.1186/s12939-023-02072-5">long COVID</a>, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6425926/">fibromyalgia</a>, <a href="https://pubmed.ncbi.nlm.nih.gov/26190206">chronic fatigue syndrome</a>, <a href="https://bmjopen.bmj.com/content/9/11/e031365">Ehlers-Danlos Syndrome</a>, <a href="https://www.aihw.gov.au/reports/chronic-disease/prevalence-of-lymphoedema-in-australia/summary">lymphoedema</a>, <a href="https://onlinelibrary.wiley.com/doi/pdf/10.1111/jan.15745">endometriosis</a> and <a href="https://www.sciencedirect.com/science/article/pii/S0140673623004579?casa_token=NtbXDPvqNT8AAAAA:F5LoNOwElLtviVatTy-Fm4bet6Vvu9fa1t3tBt0k6OwBui1G_Afp82KM2P3mUQoR2Dhuz0MVyipy">many autoimmune conditions</a>, (such as <a href="https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(18)30443-5/fulltext">multiple sclerosis</a>, <a href="https://lupusnsw.org.au/#:%7E:text=Being%20female%3A%2090%20per%20cent,families%20and%20some%20racial%20groups">lupus</a> and <a href="https://www.aihw.gov.au/reports/chronic-musculoskeletal-conditions/musculoskeletal-conditions/contents/arthritis">rheumatoid arthritis</a>). These conditions – and others that get worse over time – can significantly escalate without appropriate daily living supports.</p>
<p>The NDIS review recommends <a href="https://www.smh.com.au/politics/federal/diagnosis-list-for-ndis-to-be-scrapped-under-five-year-reboot-plan-20231207-p5epq6.html">doing away</a> with <a href="https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/list-conditions-are-likely-meet-disability-requirements">lists of conditions</a> that make people likely to be eligible for support. Instead the focus will be on <a href="https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis/overview/our-reform-blueprint">functional impact</a>. It’s unclear how effective removing such lists will be towards addressing gender inequity. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/570829/original/file-20240123-23-99ulyz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="woman helps small child with disability in blue room" src="https://images.theconversation.com/files/570829/original/file-20240123-23-99ulyz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/570829/original/file-20240123-23-99ulyz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/570829/original/file-20240123-23-99ulyz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/570829/original/file-20240123-23-99ulyz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/570829/original/file-20240123-23-99ulyz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/570829/original/file-20240123-23-99ulyz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/570829/original/file-20240123-23-99ulyz.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">Women are more likely to care for people with disability, especially when they’re younger.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/child-physical-disability-sensory-stimulating-room-2209106979">Shutterstock</a></span>
</figcaption>
</figure>
<h2>To close access gaps</h2>
<p>State health systems are <a href="https://www.dss.gov.au/sites/default/files/documents/09_2021/ndis-principles-determine-responsibilities-ndis-and-other-service-1.pdf">currently responsible for early intervention and treatment of chronic conditions</a> but the <a href="https://www.health.gov.au/resources/publications/national-strategic-framework-for-chronic-conditions?language=en">existing framework</a> doesn’t provide daily living supports where a condition leads to disability. </p>
<p>The fresh NDIS review echoes <a href="https://www.dss.gov.au/sites/default/files/documents/04_2016/independent_review_of_the_ndis_act.pdf">previous reviews</a> that found <a href="https://www.dss.gov.au/sites/default/files/documents/01_2020/ndis-act-review-final-accessibility-and-prepared-publishing1.pdf">gaps and ambiguity</a> between the NDIS and health systems. <a href="https://theconversation.com/states-agree-to-do-more-heavy-lifting-on-disability-in-exchange-for-extra-health-and-gst-funding-219321">New agreements with states</a> announced prior to the review similarly lack attention to gender, so there is no assurance women trying to access support outside the NDIS won’t continue to face the same barriers.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/when-is-a-condition-chronic-and-when-is-it-a-disability-the-definition-can-determine-the-support-you-get-183365">When is a condition 'chronic' and when is it a 'disability'? The definition can determine the support you get</a>
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</em>
</p>
<hr>
<h2>More detailed data would be a good start</h2>
<p>The review reports some <a href="https://www.ndisreview.gov.au/sites/default/files/resource/download/NDIS-Review-Supporting-Analysis.pdf">36,500 participants have entered the scheme</a> after initially being found ineligible. The cycle of applying and re-applying is a heavy administrative and emotional burden, disproportionately shouldered by women. Meanwhile, <a href="https://www.ndisreview.gov.au/sites/default/files/resource/download/NDIS-Review-Supporting-Analysis.pdf">adults with chronic conditions make up over half</a> those who didn’t meet NDIS access requirements. These decisions are likely to have disproportionately impacted women, but again, a gendered breakdown hasn’t been given. </p>
<p>Collecting more detailed data about participants “disaggregated by gender and sexuality” is listed in the review’s <a href="https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis/preface/recommendations-and-actions">recommendations</a>. Many people may be surprised to learn this is not happening already. If the government doesn’t urgently address the NDIS’ gender bias, women will continue to be left behind.</p><img src="https://counter.theconversation.com/content/220042/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Diana Piantedosi works for Women with Disabilities Victoria (WDV) and is also a member of the Victorian Disability Advisory Council (VDAC), Victorian NDIS Community Advisory Council (VCAC) and DFFH's LGBTIQA+ Disability Inclusion Expert Advisory Group.</span></em></p><p class="fine-print"><em><span>Lena Molnar works for Women with Disabilities Victoria (WDV).</span></em></p><p class="fine-print"><em><span>Maya Panisset and Raelene Wilding 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>Women are under-represented as NDIS participants and over-represented as carers. But the NDIS review ignored them.Diana Piantedosi, Honorary Research Fellow (Deakin University), PhD Candidate (La Trobe University), La Trobe UniversityLena Molnar, Research Fellow, Newcastle Youth Studies Centre, University of NewcastleMaya Panisset, Senior Research Fellow, The University of MelbourneRaelene Wilding, Associate Professor of Sociology, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2209812024-01-29T16:38:15Z2024-01-29T16:38:15ZHow simple changes can open up Britain’s green spaces so everyone can benefit from them<figure><img src="https://images.theconversation.com/files/571631/original/file-20240126-19-bgcjee.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The Catbells route in the Lake District is just one of many accessible Miles Without Stiles trails. </span> </figcaption></figure><p>A typical British countryside walk may conjure up images of vast green fields, heather-topped moorlands, and of course, countless stiles providing access throughout the right-of-way network. However, while stiles connect trails and public pathways, they are a physical barrier to accessible green spaces for all. </p>
<p>Over the last two decades, national parks across England have been removing stiles as part of a programme of measures to create more easy-to-navigate walking routes. Research by us and others shows how opening up natural spaces in such ways can particularly benefit young and disabled people. If such schemes were adopted more widely, the benefits could be spread even further.</p>
<p>Disabled people access natural and rural green spaces, including national parks, much <a href="https://www.tandfonline.com/doi/pdf/10.1080/02614360903071704">less frequently</a> than non-disabled people. And the physical barriers that stiles and other aspects of the landscape present are not the only issue. Rural green spaces can simply feel daunting for some people, often requiring skilful navigation, specialist equipment and confidence. </p>
<p>These things can also act as barriers for <a href="https://www.sciencedirect.com/science/article/pii/S0743016713000132">young people</a>, who reportedly spend <a href="https://www.gov.uk/government/statistics/the-childrens-people-and-nature-survey-for-england-summer-holidays-2021-official-statistics/the-childrens-people-and-nature-survey-for-england-summer-holidays-2021-official-statistics">less time outside</a> now than ever before. Many children and young people in the UK, particularly those with <a href="https://era.ed.ac.uk/handle/1842/9443">special educational needs or disabilities</a>, do not regularly access natural, wilder green spaces for play and recreation, despite the <a href="https://extremephysiolmed.biomedcentral.com/articles/10.1186/2046-7648-2-3">broad-ranging benefits</a> doing so can offer.</p>
<p>As a result, schools are often tasked with introducing young people to these spaces through outdoor and adventure education. This can be beneficial, but the short-term nature of these programmes leads to short-term <a href="https://www.tandfonline.com/doi/abs/10.1080/14729679.2013.867813">gains</a>, such as improved social skills. </p>
<p>That said, our latest independent evaluation reports of Nottinghamshire YMCA’s <a href="https://www.nottsymca.com/news/access-to-nature-a-positive-first-day/">access to nature programme</a> with marginalised and vulnerable young people show it can improve confidence, increase connection to nature and improve environmental awareness. It can also enhance physical, social and mental health. </p>
<p>While outdoor and adventure education programmes offer a glimpse into available opportunities such as climbing or kayaking, regular involvement in these activities is difficult for many families. </p>
<p>More <a href="https://bera-journals.onlinelibrary.wiley.com/doi/full/10.1002/berj.3953">regular access</a> to green spaces for young people can benefit them over the longer term by enabling more creative play, opportunity to experience risk and direct hands-on interaction with nature. </p>
<h2>Removing barriers</h2>
<p>Improving accessibility could be one step towards young people spending more time outside in natural landscapes, like those found in the UK’s 15 national parks. Launched by the Lake District National Park nearly two decades ago, the Miles Without Stiles initiative improves the accessibility of many public footpaths and trails. </p>
<p>Adopted now by <a href="https://democracy.peakdistrict.gov.uk/documents/s17985/LAFbg170615-Item11-2.pdf">National Parks England</a>, this scheme involves the removal of stiles, resurfacing of pathways, and a clear grading system which rates routes depending on their gradient and surface conditions. Improving accessibility also involves more consistent signposting and waymarking, decent public transport links and carpark provision, plus availability of toilets, cafés and other facilities. </p>
<p>The <a href="https://www.lakedistrict.gov.uk/visiting/things-to-do/walking/mileswithoutstiles">Lake District National Park</a> now boasts 51 Miles Without Stiles routes, the <a href="https://www.peakdistrict.gov.uk/visiting/miles-without-stiles#mwsroutes">Peak District National Park</a> has 20 and <a href="https://www.southdowns.gov.uk/all-abilities/miles-without-stiles/">South Downs National Park</a> has seven. </p>
<p>Miles Without Stiles is endorsed by charities like the <a href="https://disabledramblers.co.uk/">Disabled Ramblers</a> who advocate for a more accessible countryside. And 21% of visitors to the Lake District National Park choose routes because of their accessibility, according to a 2019 Lake District National Park Authority report. </p>
<p>Many of these routes offer a gentler introduction to wild spaces, which may make young people feel more confident in accessing these places easily, either independently or with family members. No specialist equipment is required beyond a sturdy pair of shoes, wheelchair or buggy, and more people can go at their own pace. </p>
<h2>Connecting with nature</h2>
<p>When we interviewed a group of secondary school teachers for our research in 2020, it was clear that <a href="https://journals.sagepub.com/doi/full/10.1177/1356336X20953872">inclusive</a> physical education provision involves differentiating lessons for mixed abilities and offering activities that could be modified accordingly. That relates to nature access too, and is especially relevant for young people with special educational needs and disabilities who experience a range of <a href="https://www.tandfonline.com/doi/full/10.1080/1034912X.2021.1952939">barriers</a> to regular <a href="https://www.tandfonline.com/doi/full/10.1080/10413200.2023.2181464">physical activity</a>. </p>
<p>In the case of Miles Without Stiles, well-surfaced and clearly signposted routes are clearly graded as suitable for all, for many or for some, depending on their gradient.</p>
<p>We believe that schools, sport, and other physical activity providers could learn much from Miles Without Stiles about accessibility. Given the notable benefits of physical activity and of spending time outdoors, if National Parks England were to extend the Miles Without Stiles programme across the country, it would provide more accessible options for more people. </p>
<p>Promoting Miles Without Stiles to local authorities and schools could increase awareness of the initiative, and encourage young people and their families to spend more time being active outdoors. Beyond the countryside, local authorities could even use the Miles Without Stiles model to make urban green spaces more accessible, promoting more active lifestyles for all.</p>
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<img alt="Imagine weekly climate newsletter" src="https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=754&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<p><strong><em>Don’t have time to read about climate change as much as you’d like?</em></strong>
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<p class="fine-print"><em><span>Anthony Maher works for Leeds Beckett University.</span></em></p><p class="fine-print"><em><span>Janine Coates 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>This initiative could give more disabled and young people the confidence to explore more of Britain’s wild spaces and build a stronger nature connectionJanine Coates, Senior Lecturer in Qualitative Research Methods, Loughborough UniversityAnthony Maher, Professor of Special Educational Needs, Disability and Inclusion, Leeds Beckett UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2209632024-01-23T13:59:14Z2024-01-23T13:59:14ZStudents with physical disabilities explain the challenges they face when they go to university<figure><img src="https://images.theconversation.com/files/570596/original/file-20240122-21-2f49o5.jpg?ixlib=rb-1.1.0&rect=975%2C10%2C5734%2C4456&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/portrait-disabled-student-wheelchair-choosing-books-1537798346">SeventyFour/Shutterstock</a></span></figcaption></figure><p>The number of UK students with a declared disability <a href="https://www.hesa.ac.uk/news/25-01-2022/sb262-higher-education-student-statistics">rose by 46%</a> over the five years between 2016-17 and 2020-21. Students with disabilities now make up <a href="https://www.hesa.ac.uk/data-and-analysis/students/whos-in-he">over 15% of students</a>.</p>
<p>These disabilities include learning disabilities, mental health conditions and physical disabilities.</p>
<p>Making the transition to university is not always easy for these students. They face pressure to choose the right course, adapt to an increasing expectation of independence, and socially integrate and thrive as university students. </p>
<p>And higher education is not always set up in a way that makes it <a href="https://www.policyconnect.org.uk/research/arriving-thriving-learning-disabled-students-ensure-access-all">easily accessible</a> to <a href="https://doi.org/10.1080/09687599.2018.1436041">students with disabilities</a>. Some have expressed concern that inclusive education in higher education is <a href="https://disabledstudents.co.uk/not-a-choice/">not prioritised</a>.</p>
<p>Using individual interviews, <a href="https://ijelt.dundee.ac.uk/articles/10.5334/ijelt.72#B39">our research</a> explored the experiences of seven students with a variety of physical needs as they started university. Our participants attended several different universities across the UK, with a few having experienced more than one institution. We asked them about how they decided where to go to university and about their personal experiences of being university students on their chosen course. </p>
<h2>Encountering barriers</h2>
<p>Before going to university, some of the students attended open days and found that their options for institutions – and so also for the academic courses offered by those institutions – were constrained because they felt some were not set up to accommodate their physical needs. One student claimed that a university “didn’t want to know me” because they used a wheelchair. They said: </p>
<blockquote>
<p>I’ve been on quite a few campuses that are not disabled friendly. The disabled access has been pretty poor.</p>
</blockquote>
<p>The students also experienced challenges at the universities they chose to attend. These included poor wheelchair access in living spaces, inaccessible lecture theatres and consistently broken lifts. There were issues with both accommodation and learning spaces, affecting both their educational and social experiences. Telling us about their on-campus accommodation, one student said: </p>
<blockquote>
<p>I could barely get through the door [in my wheelchair] and then it was literally like… the bed and then a desk, and then that was it. And I was like, I can’t… I couldn’t even turn around. </p>
</blockquote>
<p>Some of the students we talked to praised their university’s central student services team for the dedicated time they were given when they first arrived at university. </p>
<figure class="align-center ">
<img alt="Woman in wheelchair in casual meeting" src="https://images.theconversation.com/files/570598/original/file-20240122-17-kt4zcp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/570598/original/file-20240122-17-kt4zcp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/570598/original/file-20240122-17-kt4zcp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/570598/original/file-20240122-17-kt4zcp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/570598/original/file-20240122-17-kt4zcp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/570598/original/file-20240122-17-kt4zcp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/570598/original/file-20240122-17-kt4zcp.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">The students praised their university’s central support services.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/businesswoman-wheelchair-having-business-meeting-team-2234404489">dotshock/Shutterstock</a></span>
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<p>The students were given opportunities to discuss their individual needs and offered a range of reasonable adjustments that were formally documented on their individual support plan. This is a summary document which details the relevant support and adjustments which have been agreed to meet a student’s needs. It is prepared by the university’s disability advisor in collaboration with the student. </p>
<h2>Not involved</h2>
<p>However, on the courses they were studying, some of the students found they had to repeatedly tell lecturers about their disabilities and ask for adjustments as the lecturing team were unaware of their disability or had not prepared for their needs. </p>
<p>As a result, some students faced limitations in accessing specific optional modules, which constrained their curriculum choices. Some were excluded from participating in practical activities or excursions. One student said: </p>
<blockquote>
<p>They didn’t make any effort to get me involved. I was sat there for an hour and a half just waiting for it to be over. </p>
</blockquote>
<p>The students we interviewed were keen to identify practical solutions. One was for universities to offer open days specifically for disabled students. This would provide students with the confidence to fully explore the campus and identify potential issues, as well as provide a potential opportunity to meet and build connections with their peers. </p>
<p>In addition, the students thought that universities should consult with disabled students when assessing the accessibility of both the campus environment and the courses offered. One said: </p>
<blockquote>
<p>I think a lot of the issue is [that] a lot of … the systems have been created by able-bodied people, and so no one actually thinks to consult with us about what is actually helpful. So, there’s a lot of things in place that are useless, and there’s a lot of things that need to be in place that aren’t. </p>
</blockquote>
<p>Giving students with disabilities a voice here would allow them to play a crucial decision-making role in areas that directly affect them.</p><img src="https://counter.theconversation.com/content/220963/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>Issues included poor wheelchair access in living spaces, inaccessible lecture theatres and broken lifts.Rhiannon Packer, Senior Lecturer in Additional Learning Needs, Cardiff Metropolitan UniversityEmily Abbinett, Senior Lecturer, Cardiff Metropolitan UniversityPaul Smith, Principal Lecturer, Cardiff Metropolitan UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2184952024-01-22T20:42:47Z2024-01-22T20:42:47ZDespite legislative progress, accessible cities remain elusive<figure><img src="https://images.theconversation.com/files/566380/original/file-20231218-29-jo501r.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5755%2C3833&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Textured surfaces on city pavements can help make public space more accessible to disabled persons.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/despite-legislative-progress-accessible-cities-remain-elusive" width="100%" height="400"></iframe>
<p>Amid a complex web of disability civil rights legislation in Canada and the <a href="https://www.ada.gov/">United States</a>, one could easily be lulled into thinking that the work is done. Some of this legislation is now <a href="http://www.ccdonline.ca/en/humanrights/promoting/20years">several decades old</a>; more recent additions include <a href="https://www.ontario.ca/laws/regulation/110191">accessible design standards and guidelines</a> and barrier-free elements of <a href="https://www.ontario.ca/laws/regulation/120332">building codes</a>.</p>
<p>But <a href="https://accessnow.com/moca/">if only this were true</a>. Watching Toronto and other cities in North America work on accessibility feels a bit like watching a snail moving through molasses: the best route is unclear, progress is slow and they often become stuck.</p>
<h2>Paratransit</h2>
<p>Access to safe and reliable public transit is one such problem. For example, many of the issues <a href="https://doi.org/10.1177/1524839919888484">plaguing paratransit (ideally on-demand, door-to-door service for disabled persons) today</a> — unacceptably long wait times, having to plan and schedule days in advance, service costs, convoluted trip regulations, failing to pick people up — are often as <a href="https://doi.org/10.1177/1524839919888484">old as the services themselves</a>. </p>
<p>It’s perhaps hard to imagine, but it could get worse. Data from the <a href="https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2021002-eng.htm">2017 Canadian Survey on Disability</a> indicate that nearly 18 per cent of <em>housebound</em> disabled persons report the absence of transport service as the cause — they have somewhere to go, but no way to get there.</p>
<p>New York City, Toronto and Montréal have underground public transit. These systems share a checkered past where disability is concerned. Time and time again, each system has been the site of disability activism, litigation, accessibility retrofit, cycles of investment progress and delay, and what I call last-millimetre problems.</p>
<p>In New York City, it took multiple <a href="https://new.mta.info/accessibility/ada-settlement-notice">class-action lawsuits</a> filed by disabled persons to get the Metropolitan Transportation Authority (MTA) to launch a multi-decade accessibility plan. This included a promise to stop renovating stations in violation of the Americans with Disabilities Act (ADA), the <a href="https://www.eeoc.gov/rehabilitation-act-1973-original-text">Rehabilitation Act of 1973</a> and <a href="https://www.nyc.gov/site/cchr/law/the-law.page">New York City Human Rights Law</a>. </p>
<p>Seven years on, an August 2017 article in the <a href="https://www.nytimes.com/2023/08/31/nyregion/nyc-subway-accessible-disabled.html"><em>New York Times</em></a> reported on the MTA’s stalled progress and justifiable skepticism on the part of disabled passengers.</p>
<p>The Toronto Transit Commission (TTC) is in the midst of a promising multi-year <a href="https://www.ttc.ca/accessibility/Accessible-Transit-Services-Plan">Accessible Transit Services Plan</a>. The plan includes accessibility retrofit of many stations built before the <a href="https://www.ontario.ca/laws/statute/05a11">2005 Accessibility for Ontarians with Disabilities Act (AODA)</a> became law. These are massive infrastructure projects with hefty price tags.</p>
<p>Symptomatic of a much broader failure across the province to meet AODA’s 2025 deadline, implementation of the TTC’s accessibility plan is behind schedule. In the most recent <a href="https://files.ontario.ca/msaa-fourth-review-of-aoda-final-report-en-2023-06-30.pdf">AODA progress review</a>, Rich Donovan, CEO of The Return on Disability Group, declared a state of crisis following “17 years of missed opportunities,” “minimal change in accessibility” and reports of terrible accessibility experiences across the province.</p>
<p>Looking back reveals a deep history of transit <a href="https://www.cbc.ca/news/canada/montreal/montreal-metro-50-years-criticism-1.3804756">criticism and activism in Montréal</a>. In 1988, members of the American Disabled for Accessible Public Transit (ADAPT) protested poor transit accessibility during the <a href="https://adaptmuseum.net/gallery/index.php?/category/24">American Public Transit Association (APTA) meetings held in Montréal</a>. This occurred two years before the iconic “<a href="https://www.nytimes.com/2020/07/22/us/ada-disabilities-act-history.html">Capitol Crawl</a>” in Washington, D.C. where, tired of congressional inertia, disabled protesters climbed the steps of the Capitol to push for the immediate passing of the Americans with Disabilities Act. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/stSkqzI9mKY?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">A 2009 documentary about disabled persons’ experiences with Montréal transit.</span></figcaption>
</figure>
<p>Montréal’s Société de transport de Montréal (STM) now has a long-range accessibility plan with an <a href="https://www.cbc.ca/news/canada/montreal/stm-metro-accessibility-plan-will-mean-more-elevators-ramps-1.4013361">aspirational end date of 2038</a>. The <a href="https://cutaactu.ca/stm-wins-equity-diversity-and-inclusion-award/">Canadian Urban Transit Association</a>) recently announced STM as the winner of an equity, diversity and inclusion award, noting it has “taken significant steps in enhancing customer accessibility since 2023.”</p>
<h2>The last millimetre problem</h2>
<p>Beyond a now seemingly normalized requirement for disabled persons to hold transit authorities to account, much of the progress underground has focused on elevators.</p>
<p>What I find astounding is the “last millimetre problem” — a wide gap or vertical misalignment between platforms and transit vehicles making it impossible or hazardous for some disabled persons, like my daughter, to get on or off the system. The problem seems to occur most often when newly acquired trains meet up with old stations. </p>
<p>In New York City, a vertical misalignment of up to six inches was reported in at least one MTA station. Gaps across the system have led to <a href="https://amsterdamnews.com/news/2022/10/26/riders-with-disabilities-sue-mta-to-close-the-gap-between-subway-train-and-platform/">more class-action litigation</a>. </p>
<p>As of 2019, the TTC has a subway platform gap retrofit program. Consultation
with its Accessibility Advisory Committee produced tolerances of <a href="https://pw.ttc.ca/-/media/Project/TTC/DevProto/Documents/Home/Public-Meetings/Board/2019/September_24/Reports/8_Subway_Platform_Gap_Retrofit_Program.pdf">89 mm or less and 38 mm or less respectively for horizontal and vertical misalignments</a>. Misalignment problems have also been reported <a href="https://montrealgazette.com/news/local-news/how-some-universally-accessible-montreal-metro-stations-are-not">across multiple Montréal Metro stations</a>.</p>
<p><a href="https://doi.org/10.1177/0739456X231175595">Disability as an afterthought</a> makes platform and vehicle retrofit an inconvenient, costly necessity. The technical part of this problem can likely be solved with existing technology, like platform gap fillers and bridge plates. Waiting around for disabled passengers to engage in class-action litigation is not an effective strategy.</p>
<h2>Cycling infrastructure</h2>
<p>The voices of disabled persons have been relegated to the edges of the conversation about active transportation (cycling, walking) and healthy, climate-resilient urban futures.</p>
<p><a href="https://doi.org/10.18061/dsq.v42i1.8276">Disabled persons ride bikes</a> on and <a href="https://www.cbc.ca/player/play/2059170883639">off-road</a>. The literature on cycling and disability focuses on <a href="https://doi.org/10.1016/j.jth.2017.01.013">planning for the inclusion of disabled cyclists</a>. Due consideration should also be given to interactions between <a href="https://doi.org/10.1016/j.healthplace.2022.102896">disabled pedestrians</a> and transport infrastructure in general, including bike lanes. </p>
<p>Recently, a bike lane in Toronto was built level to an adjacent sidewalk, without sufficient aids to alert <a href="https://www.cbc.ca/news/canada/toronto/blind-advocates-toronto-bike-lanes-1.7034433">blind pedestrians</a>. Design solutions exist — the Canadian National Institute for the Blind’s <a href="https://www.cnib.ca/en/sight-loss-info/clearing-our-path?region=on"><em>Clearing Our Path</em></a> suggests various types and applications of tactile walking surface indicators.</p>
<p>Curbside bike lanes can produce other <a href="https://www.toronto.ca/legdocs/mmis/2018/di/comm/communicationfile-79642.pdf">problems for disabled pedestrians</a>. For example, parking spaces adjacent to bike lanes with a step up to the sidewalk can force wheelchair users into the path of bicycles or vehicles.</p>
<p>Cycling infrastructure needs to be inclusive and safe infrastructure.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/570542/original/file-20240122-17-emsqmn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="a bidirectional bike lane" src="https://images.theconversation.com/files/570542/original/file-20240122-17-emsqmn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/570542/original/file-20240122-17-emsqmn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/570542/original/file-20240122-17-emsqmn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/570542/original/file-20240122-17-emsqmn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/570542/original/file-20240122-17-emsqmn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/570542/original/file-20240122-17-emsqmn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/570542/original/file-20240122-17-emsqmn.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">A bike lane in downtown Toronto.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Consulting the community</h2>
<p>Research, policy, legislation, design and technologies exist to improve urban accessibility. Despite real progress on both the legislative and infrastructure fronts, the lived experiences of disabled persons continue to highlight serious incongruity between legislation, policies and outcomes.</p>
<p>Accessibility advisory committees are often a requirement of provincial legislation, and enacted at the <a href="https://www.ontario.ca/page/municipal-accessibility-advisory-committees">provincial or municipal levels of government</a>. Transit agencies often have separate committees comprised of community volunteers and agency staff — the <a href="https://www.ttc.ca/about-the-ttc/the-advisory-committee-on-accessible-transit">TTC</a>, <a href="https://new.mta.info/accessibility/ACTA">New York MTA</a> and <a href="https://www.stm.info/en/about/corporate-governance/board-committees/customer-service-and-universal-accessibility-committee">Montréal STM</a> all have committees. </p>
<p>Committee membership criteria should ensure adequate representation from within and across disability communities. Disabled community members should be compensated for sharing their specialized knowledge. </p>
<p>Real accountability, rather than performative empty consultation, should be the order of the day. Accessible cities can only happen when governments and their various agencies deeply listen to and act upon what disabled citizens have to say.</p><img src="https://counter.theconversation.com/content/218495/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ron Buliung 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>Decades of activism have resulted in legislation and infrastructure to make cities more accessible, but the lived experiences of disabled residents shows there’s still a long way to go.Ron Buliung, Professor, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2201432024-01-17T04:33:05Z2024-01-17T04:33:05ZA new year means new fitness goals. But options for people with disability are few and far between<figure><img src="https://images.theconversation.com/files/569758/original/file-20240117-19-y64dwz.jpg?ixlib=rb-1.1.0&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/african-american-senior-using-resistance-band-2263427617">Drazen Zigic/Shutterstock</a></span></figcaption></figure><p>Around <a href="https://www.aihw.gov.au/australias-disability-strategy/technical-resources/data-sources/australian-bureau-of-statistics-sdac">4.4 million Australians</a>, or 18% of our population, live with disability. This number is likely to rise as our population ages. </p>
<p>Adults living with disability can experience a range of benefits from participating in community-based physical activities such as dance, Tai Chi and yoga, our recently published <a href="https://bjsm.bmj.com/content/early/2023/12/21/bjsports-2023-107123">review</a> found. </p>
<p>Yet adults with disability are <a href="https://bmjopensem.bmj.com/content/7/1/e000991">less physically active</a> than those without disability, with inclusive community-based physical activities few and far between. This puts people with disability at increased risk of further disability. </p>
<p>People with disability should be able to join a local club or group to participate in physical activity they enjoy, just like the rest of us. So how can we provide more physical activity options?</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/thinking-of-using-an-activity-tracker-to-achieve-your-exercise-goals-heres-where-it-can-help-and-where-it-probably-wont-219235">Thinking of using an activity tracker to achieve your exercise goals? Here's where it can help – and where it probably won't</a>
</strong>
</em>
</p>
<hr>
<h2>Benefits of physical activity</h2>
<p>Our <a href="https://bjsm.bmj.com/content/early/2023/12/21/bjsports-2023-107123">systematic review</a> included 74 trials with 2,954 men and women living with mild-to-moderate physical and intellectual disability.</p>
<p>We looked at studies of Tai Chi, Qigong (which is similar to Tai Chi but more straightforward, using more repetitive movements), yoga, dance, water exercise, gym training, boxing, horse riding, Nordic walking and running. All but one of these physical activities were delivered in condition-specific groups (for example, a group for people with Parkinson’s disease). </p>
<figure class="align-center ">
<img alt="People doing Tai Chi in a park" src="https://images.theconversation.com/files/569742/original/file-20240117-15-l075wi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/569742/original/file-20240117-15-l075wi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/569742/original/file-20240117-15-l075wi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/569742/original/file-20240117-15-l075wi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/569742/original/file-20240117-15-l075wi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/569742/original/file-20240117-15-l075wi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/569742/original/file-20240117-15-l075wi.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">Poses in Tai Chi can be modified to suit people with a range of abilities.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/elderly-asian-people-practicing-tai-chi-381172381">Dragon Images/Shutterstock</a></span>
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<p>People found benefits from participating in these recreation activities. Benefits included improvements in walking, balance and quality of life, and reductions in fatigue, depression and anxiety. </p>
<p>Dance was particularly beneficial for improving walking. Tai Chi, yoga, dance and water exercise were beneficial for balance. Yoga and water exercise were beneficial for fatigue and Tai Chi for depression. </p>
<h2>Considerations for physical recreation in the community</h2>
<p>Some people with disabilities prefer to be active with others who have similar conditions and abilities. Others prefer to be active locally with family and friends. </p>
<p>Travel to a disability-specific activity may increase the cost and time involved. The lack of choice puts people with a disability at a disadvantage compared to non-disabled people. </p>
<p>Some physical recreation activities included in the review used adjustments and extra equipment to be suitable for people with disability. These adjustments were usually only small (for example, seated options or spending a shorter time in a certain pose or position) and equipment was low cost (for chairs, exercise bands, and so on). </p>
<p>Most local community-based recreation groups should be able make simple adjustments to meet the needs of people living with mild to moderate disability. However this doesn’t routinely happen. </p>
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Read more:
<a href="https://theconversation.com/sport-and-physical-activity-play-important-roles-for-aboriginal-and-torres-strait-islander-communities-but-there-are-barriers-to-participation-168263">Sport and physical activity play important roles for Aboriginal and Torres Strait Islander communities, but there are barriers to participation</a>
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<p>In the review, few activity leaders (37%) had experience and/or training working with people with disability. This may limit the confidence of the activity leader to include a person with disability in the class. It may also limit the confidence of the person with disability to join a local class. </p>
<h2>Access to services is a basic right</h2>
<p>Australia is a signatory on the <a href="https://humanrights.gov.au/our-work/disability-rights/united-nations-convention-rights-persons-disabilities-uncrpd">Convention on the Rights of Persons with Disabilities</a>. Australia also has a <a href="https://humanrights.gov.au/our-work/disability-rights/disability-discrimination#:%7E:text=The%20Disability%20Discrimination%20Act%201992,places%2C%20because%20of%20their%20disability.">Disability Discrimination Act</a> (1992). But this seems to provide little incentive for services to take active measures to prevent disability discrimination. </p>
<p>The <a href="https://disability.royalcommission.gov.au/">Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability</a> confirmed people with disability were still excluded from many areas of society because of their disability. </p>
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<img alt="Woman dances in a class" src="https://images.theconversation.com/files/569745/original/file-20240117-27-8fb39c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/569745/original/file-20240117-27-8fb39c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/569745/original/file-20240117-27-8fb39c.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/569745/original/file-20240117-27-8fb39c.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/569745/original/file-20240117-27-8fb39c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/569745/original/file-20240117-27-8fb39c.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/569745/original/file-20240117-27-8fb39c.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">People with disability often face greater costs, more travel and fewer choices for physical activity.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/old-lady-dancing-other-women-during-2059280225">BearFotos/Shutterstock</a></span>
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<p>The commission’s <a href="https://disability.royalcommission.gov.au/publications/final-report">final report</a> recommended strengthening laws to protect people with disability, prevent discrimination, and build a more inclusive society. </p>
<p>Momentum and expectation is growing in Australian society for better inclusion for people living with disability. </p>
<h2>So what can we do for better physical activity inclusion?</h2>
<p>First, more physical activity options suitable for people with disability are needed in the community. Guided by the <a href="https://www.inclusivesportdesign.com/blog-posts/the-inclusion-spectrum-planning-sport-activities-for-everyone">inclusion spectrum</a>, there should be options for both disability-specific and inclusive mainstream activities. People with disability will then be able to choose an activity that suits their needs and preference. </p>
<p>A handful of <a href="https://coablefitness.com.au/story/">organisations</a> are leading the way, often led by a person with disability or disability advocate, but more are needed.</p>
<p>Second, community-based physical activities need to enable the person with disability to access the setting safely and have equipment suitable to use. Community organisations can audit their service using online tools, such as <a href="https://doi.org/10.1080/09638280410001711432">AIMFREE</a> (Accessibility Instruments Measuring Fitness and Recreation Environments), to evaluate and improve their accessibility. </p>
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Read more:
<a href="https://theconversation.com/we-need-beach-access-for-everyone-and-that-includes-people-with-a-disability-154158">We need beach access for everyone, and that includes people with a disability</a>
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<p>A welcoming environment can help ensure a positive experience for the person with disability. Disability Sports Australia offers a free online <a href="https://www.sports.org.au/accessibility-champion">Accessibility Champion course</a> for sporting clubs and recreation providers. This aims to improve staff and volunteer knowledge and confidence to welcome people with disability. All clubs and service providers should commit to completing this type of training.</p>
<p>Finally, we can all do better to ensure we are accepting and welcoming of people of all abilities in the community, especially in recreation or sporting activities we’re involved in. When this happens, Australia will take an important step to being a more inclusive society.</p><img src="https://counter.theconversation.com/content/220143/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Leanne Hassett receives funding from the National Health and Medical Research Council of Australia and Medical Research Future Fund. </span></em></p><p class="fine-print"><em><span>Anne Tiedemann has received funding from the National Health and Medical Research Council and the Medical Research Future Fund. She is an Executive Committee Member of the Australia and New Zealand Falls Prevention Society and the World Falls Prevention Society. </span></em></p><p class="fine-print"><em><span>Cathie Sherrington has received funding from the National Health and Medical Research Council and the Medical Research Future Fund. She is the voluntary secretary of the Cerebral Palsy Sport and Recreation Association of NSW and she is an executive member of the Australian and NZ Falls Prevention Society. </span></em></p>People with disability gain many benefits from being physically active, from greater movement to improved mental health. But options for community-based physical activity are limited.Leanne Hassett, Associate Professor in Physiotherapy, University of SydneyAnne Tiedemann, Professor of Physical Activity and Health, University of SydneyCathie Sherrington, Professor, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2207742024-01-16T19:15:21Z2024-01-16T19:15:21ZDave Chappelle has built a reputation for ‘punching down’ on trans people – and now he’s targeting disabled people<p>Dave Chappelle’s latest Netflix special, The Dreamer, opens with a story about meeting Jim Carrey, who, at the time, was method acting and portraying comedian Andy Kaufman. </p>
<p>Chappelle recalls being “very disappointed” at having to pretend to be speaking to Kaufman, when he could clearly see it was Carrey. The punchline? “That’s how trans people make me feel.”</p>
<p>Whether or not non-transgender people find it funny, it is a joke that stabs at the fundamental insecurity of being trans. It takes the stance of <a href="https://www.oxfordreference.com/display/10.1093/oi/authority.20110803095507973">biological essentialism</a>: that people have innate and intractable traits by virtue of their biology. </p>
<p>Biological essentialism <a href="https://spssi.onlinelibrary.wiley.com/doi/full/10.1111/sipr.12099">has been used</a> by the <a href="https://commonslibrary.org/the-anti-trans-movement/">anti-trans</a> lobby to deny that trans women are women and trans men are men, and to justify sexism and racism <a href="https://theconversation.com/what-is-essentialism-and-how-does-it-shape-attitudes-to-transgender-people-and-sexual-diversity-203577">before that</a>.</p>
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Read more:
<a href="https://theconversation.com/what-is-essentialism-and-how-does-it-shape-attitudes-to-transgender-people-and-sexual-diversity-203577">What is essentialism? And how does it shape attitudes to transgender people and sexual diversity?</a>
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<p>Chappelle’s Netflix specials have become notorious for his jokes targeting the transgender community, but Chappelle has claimed his comedy is <a href="https://variety.com/2022/tv/news/dave-chappelle-netflix-speech-whats-in-a-name-1235311467/">more nuanced</a> and artistic than his critics allow.</p>
<p>He claims to be an equal opportunity offender, “punching down” (his words) to all minorities equally. To prove this point, in The Dreamer he takes on what he calls “handicapped jokes”.</p>
<h2>Mirroring prejudice</h2>
<p>While the word “handicapped” was once used to describe people with disability, it is <a href="https://adata.org/factsheet/ADANN-writing">now considered offensive</a>. Chappelle is either unaware or just doesn’t care that the term is decades out of date.</p>
<p>Comedy, at its best, draws from and reveals insight into the human condition. It slips into mockery when, bereft of understanding, it does nothing more than mirror prejudice.</p>
<p>Chappelle’s first disability joke has the potential to be clever and insightful. He says:</p>
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<p>there’s probably a handicap in the back right now ’cause that’s where they make them sit.</p>
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<p>A joke about the placement of people with disability at the back of the theatre is clever as it unmasks social disadvantage. In different hands, it could be a reflection on the <a href="https://pwd.org.au/resources/models-of-disability/">social model of disability</a>.</p>
<p>The social model of disability says the problem of disability is not “handicapped” bodies but the social environment designed to exclude and marginalise them. For example, a wheelchair user is not disabled because they cannot walk (they have wheels for mobility), but because of a lack of access to ramps – or a theatre which insists they sit at the back of the room.</p>
<p>But clever turns to mockery with a visual punchline, as Chappelle twists his hand and walks like a “cripple”. It is mockery bereft of understanding.</p>
<p>A crass attack on paraplegic sexual function follows: “Who the fuck invites a paraplegic to an orgy?”. It’s ableism masquerading as comedy. </p>
<p><a href="https://theconversation.com/ableism-and-disablism-how-to-spot-them-and-how-we-can-all-do-better-204541">Ableism</a> refers to stereotypical attitudes and behaviours that dehumanise people with disability, treating them as different, less than, incapable, foolish, laughable, excludable. In this case, Chappelle repeats <a href="https://link.springer.com/article/10.1007/s13178-023-00873-5">the damaging and false stereotype</a> that people with disability are asexual and unsexy. </p>
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Read more:
<a href="https://theconversation.com/ableism-and-disablism-how-to-spot-them-and-how-we-can-all-do-better-204541">Ableism and disablism – how to spot them and how we can all do better</a>
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<p>Australia’s Disability Royal Commission <a href="https://disability.royalcommission.gov.au/system/files/2023-03/Public%20hearing%2028%20-%20Counsel%20Assisting%20submissions%20-%20SUBM.0047.0001.0105.pdf">heard</a> how ableism, especially as propagated in the media, drives violence, abuse, neglect and exploitation of people with disability. It noted we learn our language and attitudes from the media and popular culture, which often leads to abusive behaviour in public and online.</p>
<p>When comedy relies on humiliation and cruelty to earn its laughter it can have serious consequences. Rather than propagate ableism, <a href="https://www.routledge.com/Film-Comedy-and-Disability-Understanding-Humour-and-Genre-in-Cinematic/Wilde/p/book/9780367587680">comedy can deconstruct it</a>, revealing the absurdity of discrimination, and questioning notions of normality, abnormality and ideas of difference.</p>
<p>But watching the special, it feels like disability is not Chappelle’s real target. Instead, it seems he embraces being an “equal opportunity” offender who mocks disability as a defence for his long-running transgender jokes.</p>
<h2>The impacts of mockery</h2>
<p>Witty transgender comedy might highlight the social issues trans people face, but Chapelle exemplifies those issues. In The Dreamer, he makes the tired joke that if he was arrested in California he’d claim in court that he identified as a woman to be sent to women’s jail so he could have sex with women.</p>
<p>His jokes rely on prevailing disgust about transgender bodies and increasingly politicised insistence that transgender people are not real women or men. These views shared in popular culture are <a href="https://www.tandfonline.com/doi/abs/10.1080/10570314.2019.1615635">coming to inform</a> anti-trans policy in healthcare, education and the justice system. </p>
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<p>As the majority of the general population <a href="https://www.ipsos.com/sites/default/files/ct/news/documents/2023-06/Ipsos%20Global%20Advisor%20-%20LGBT%2B%20Pride%202023%20-%20AUSTRALIAN%20Press%20Release.pdf">do not know a trans person</a>, the media has significant influence over perceptions of trans people. </p>
<p>Throughout four Netflix specials, Chapelle has made no effort to understand the object of his jokes or the impact of his mockery on their daily lives. While trans representation in the media is improving, trans people are still exposed to a plethora of <a href="https://doi.org/10.36828/newvistas.226">negative depictions</a> of their identities in the media across a range of mediums. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7826438/">Research</a> shows this is significantly associated with clinical levels of depression, anxiety and psychological distress. </p>
<p>Near the end of The Dreamer, Chappelle paints himself as the victim of the “unjust” LGBTQI+ campaign against his comedy, which included Chappelle being <a href="https://www.npr.org/2022/05/04/1096547296/dave-chappelle-video-attacked-onstage-performance-hollywood-bowl-netflix">physically attacked</a> on stage at a 2022 show. </p>
<p>Physical violence is never justified. However it should be noted comedy which “punches down” on trans people <a href="https://link.springer.com/article/10.1007/s13178-017-0280-2">helps to drive</a> the negative perceptions that lead to <a href="https://equityhealthj.biomedcentral.com/articles/10.1186/s12939-022-01632-5">violence</a> against queer people that we see on social media feeds and in the daily experience of transgender people globally. </p>
<p>Chappelle is an influential comedian who proudly punches down. It is true he is an egalitarian bully. In The Dreamer, he laughs at disability, bisexuality and gay men. But his jokes continue to come back to one target: the transgender community. When will we say enough is enough? When will we stop laughing?</p>
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Read more:
<a href="https://theconversation.com/yes-words-can-harm-young-trans-people-heres-what-we-can-do-to-help-176788">Yes, words can harm young trans people. Here's what we can do to help</a>
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<img src="https://counter.theconversation.com/content/220774/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>In The Dreamer, Chapelle laughs at disability, bisexuality and gay men. But his jokes continue to come back to one target: the transgender community.Shane Clifton, Associate Professor of Practice, School of Health Sciences and the Centre for Disability Research and Policy, University of SydneyJemma Clifton, Research officer, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2185662024-01-09T23:08:30Z2024-01-09T23:08:30ZHearing the voices of Indigenous people with neurodevelopmental disabilities<iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/hearing-the-voices-of-indigenous-people-with-neurodevelopmental-disabilities" width="100%" height="400"></iframe>
<p>Indigenous Peoples with neurodevelopmental disabilities (NDDs) and mental health challenges are among the most marginalized groups in the country. NDDs include things like autism and attention-deficit/hyperactivity disorder (ADHD). </p>
<p>Research points to <a href="https://uwaterloo.ca/canadian-index-wellbeing/reports/canadian-index-wellbeing-national-report">persistent health inequities</a>, and <a href="https://doi.org/10.1016/j.socscimed.2017.01.021">mental health research</a> has tended to overemphasize suicide and substance use in Indigenous populations. </p>
<p>Although their stories also tell of strengths, struggles and important community contributions, the voices of Indigenous Peoples with NDDs often go unheard. </p>
<p>A report that includes immediate and long-term calls to action was developed to shed light on the experiences of this under-represented group and create meaningful change in their lives. </p>
<p>“<a href="https://brocku.ca/thomson-lab/wp-content/uploads/sites/209/Forming-the-Circle-Indigeneity-Neurodevelopmental-Disability-Mental-Health-Sept-2023-1.pdf">Forming the Circle: 2023 Gathering on Indigeneity, Neurodevelopmental Disabilities and Mental Health</a>” was informed by a community event held last spring that brought together Indigenous community members, Knowledge Keepers and Elders, service providers, researchers and non-Indigenous allies from across Canada. </p>
<p>The report was authored by researchers from Brock University (Kendra Thomson) and the Centre for Addiction and Mental Health - CAMH (Louis Busch) and reflects the findings from the event and recommendations for future actions. Attendees provided feedback on the report in focus groups after the event and before the report was released.</p>
<h2>The gathering</h2>
<p><a href="https://brocku.ca/thomson-lab/2023-gathering-on-indigeneity-neurodevelopmental-disabilities-and-mental-health-in-ontario/">The gathering</a> explored how colonization, systemic discrimination and determinants of health such as food insecurity, housing and access to cultural safe services impact individuals, families and communities. </p>
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<figcaption><span class="caption">At the 2023 Gathering on Indigeneity, Neurodevelopmental Disabilities and Mental Health at the Centre for Addiction and Mental Health in Toronto, people with lived experience, traditional Knowledge Keepers, clinicians and researchers from across Canada shared knowledge and expertise.</span></figcaption>
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Read more:
<a href="https://theconversation.com/as-an-indigenous-doctor-i-see-the-legacy-of-residential-schools-and-ongoing-racism-in-todays-health-care-162048">As an Indigenous doctor, I see the legacy of residential schools and ongoing racism in today's health care</a>
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<p>Gathering attendees concluded that the path forward should begin with establishing a national network on Indigeneity, neurodevelopmental disabilities and mental health to take action that will enhance the health and well-being of Indigenous Peoples with NDDs and mental health challenges. </p>
<p>Some of the long-term recommendations within the report call for: </p>
<ul>
<li><p>The creation of programs to promote and preserve culture;</p></li>
<li><p>Partnerships between Indigenous and non-Indigenous organizations, with training provided to enhance the cultural safety of programs;</p></li>
<li><p>The development of culturally appropriate assessment tools and supportive programs for Indigenous Peoples with NDDs;</p></li>
<li><p>Examination of the experience of Indigenous Peoples with NDDs within the criminal justice system, youth populations, child welfare system and those impacted by environmental issues; and </p></li>
<li><p>Evaluation of the impact of incorporating traditional teachings and medicines within educational, social and health-related programs.</p></li>
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<h2>JJ’s story</h2>
<p>Among those in attendance was JJ Thunder Bear Man, an Anishinaabe man who travelled almost 2,000 kilometres from Dryden to Toronto to share his story at the gathering. </p>
<p>Born in the early 1980s in a community in northern Ontario, JJ was put into the foster-care system at age five as his parents faced the realities of their experiences at <a href="https://nctr.ca/education/teaching-resources/residential-school-history/">residential schools</a>. </p>
<p>Adolescence came with its own challenges, with JJ getting involved in a gang and struggling with addiction. His journey toward healing and recovery began when he joined Community Living in Dryden at the age of 18. His support team helped him to connect to his culture and to community.</p>
<p>The revelation of his spirit helper, the bear, and his spirit name, Thunder Bear Man, offered a powerful lens into JJ’s path to healing and connection to culture. </p>
<p>His heartfelt desire to reconnect with his family’s language, lost over time, also added a poignant layer to his story. He recalls having to ask his sister what his mother was saying when they finally got to visit years later, as she didn’t speak English, and he couldn’t speak Ojibwe. </p>
<p>JJ’s story, not unlike other young Indigenous Peoples living with NDDs and mental health challenges, highlights the <a href="https://afn.ca/community-services/languages/">dire need for preserving language and tradition</a>. </p>
<h2>Beautiful differences</h2>
<p>JJ’s story is one that contains experiences familiar to many Indigenous Peoples with neurodevelopmental differences and mental health challenges.</p>
<p>During the event, JJ issued a plea for kindness, understanding and companionship for neurodiverse individuals within Indigenous communities, reflecting on the impact acknowledgement and support can have. </p>
<p>The importance of a supportive “strength-based” approach was a theme that emerged again and again at the gathering, stressing the need to recognize individuals’ unique contributions, accomplishments and abilities. Many participants used the term “neurodevelopmental difference” rather than disability or disorder.</p>
<p>This report is intended to mark only the start of a broader discussion, new and strengthened relationships and a collective commitment across the country to take action to improve the lives of Indigenous Peoples with beautiful differences.</p>
<p><em>We would like to acknowledge JJ Thunder Bear Man for bravely sharing his moving story with us, and his helper, Lesley Barreira of Surrey Place, for supporting him in doing so.</em></p><img src="https://counter.theconversation.com/content/218566/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kendra Thomson receives funding from the Canadian Institutes of Health Research.</span></em></p><p class="fine-print"><em><span>Louis Busch receives funding from the Social Sciences and Humanities Research Council (SSHRC).</span></em></p>Although their stories often tell of strengths, struggles and important community contributions, the voices of Indigenous people with neurodevelopmental disabilities often go unheard.Kendra Thomson, Associate Professor in the Department of Applied Disability Studies, Brock UniversityLouis Busch, Community Support Specialist, Shkaabe Makwa Centre for First Nations, Inuit, and Métis Wellness at CAMH, Doctoral Student, University of TorontoLicensed 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/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>
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</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/2194012023-12-07T10:44:55Z2023-12-07T10:44:55ZPolitics with Michelle Grattan: Bill Shorten on making the NDIS fit for purpose<p>Bill Shorten, Minister for the National Disability Insurance Scheme and Government Services, has released the review of the NDIS, which recommends sweeping changes to the scheme. The reforms to come will see the states take up much of the responsibility for providing services for people with more minor issues, especially children with developmental delays.</p>
<p>Shorten joined the podcast to talk about the way ahead for a scheme that has run off the rails and become financially unsustainable. </p>
<p>At the centre of the changes is that:</p>
<blockquote>
<p>We want to make sure that it’s not just diagnosis which puts you in the scheme – that we look at your disability and then we look at how it affects your daily living and see if the scheme is the right thing to assist you. </p>
</blockquote>
<p>But Shorten is quick to reassure that everyone who needs it will be cared for. He points out that disability is universal, in the sense that </p>
<blockquote>
<p>You can get it at birth, you can get it through the DNA lottery code you have. Or in the blink of an eye, you know, in a swimming injury or on a country road. So it’s a universal challenge and people shouldn’t be written off because they have an impairment. So it’s on all of us to improve the game.</p>
</blockquote>
<p>When pressed on whether the reforms will bring losers, Shorten homes on those doing the wrong thing:</p>
<blockquote>
<p>Some of the bad businesses are going to be losers. Some of the people who are not value adding the system, they’re going to be losers. But going to participants, this system will mean that if you need support, that’s what you’re going to get.</p>
</blockquote><img src="https://counter.theconversation.com/content/219401/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michelle Grattan 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>Bill Shorten joins us on the podcast today to discuss the recent NDIS report and how he sees its path forward in modern Australia.Michelle Grattan, Professorial Fellow, University of CanberraLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2177422023-12-05T22:16:16Z2023-12-05T22:16:16ZMicrosoft’s ban on third-party controllers on the Xbox excludes some disabled gamers from using the device<figure><img src="https://images.theconversation.com/files/563483/original/file-20231204-15-zq5wh4.jpg?ixlib=rb-1.1.0&rect=0%2C18%2C4031%2C2999&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The Xbox Adaptive Controller was designed to make gaming more accessible.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/microsofts-ban-on-third-party-controllers-on-the-xbox-excludes-some-disabled-gamers-from-using-the-device" width="100%" height="400"></iframe>
<p>When it comes to accessibility in gaming, Microsoft takes two steps forward with the Xbox Adaptive Controller, but a giant leap back with its ban on third-party devices.</p>
<p>On Oct. 31, some Xbox players began receiving a <a href="https://tech.hindustantimes.com/gaming/news/banned-microsoft-takes-firm-stance-on-third-party-xbox-controllers-and-accessories-71698733625081.html">new error code</a> on their Xbox One and Xbox Series X/S consoles. The error code meant that players were using an unauthorized third-party controller — one not made by Microsoft or an official <a href="https://www.xbox.com/en-US/designed-for-xbox">hardware partner</a>. Players were given two weeks’ notice until the unauthorized controller would no longer work with their consoles. </p>
<p>Essentially, Microsoft had quietly banned the use of controllers not made or approved by the company. In the following weeks, Microsoft officially stated the ban was meant to protect players’ gaming experiences, and <a href="https://support.xbox.com/en-US/help/errors/error-code-0x82d60002">ensure the quality and safety of players’ controllers</a>. </p>
<p>The ban, however, presents barriers to many disabled gamers who may use third-party controllers for accessibility reasons. </p>
<h2>Social exclusion and accessibility</h2>
<p>When we talk about accessibility and the social exclusion of disabled people, we often do not consider accessible forms of leisure <a href="https://nyupress.org/9781479853434/restricted-access/">to be important</a>. </p>
<p>Legal policies such as the <a href="https://www.ada.gov/">Americans with Disabilities Act</a> and the <a href="https://www.ontario.ca/laws/statute/05a11">Accessibility for Ontarians with Disabilities Act</a> that legislate access to public spaces and provide protection from employment discrimination are often viewed as more important.</p>
<p>But video games are a massive source of entertainment for both children and adults. The gaming industry is currently the <a href="https://gamerhub.co.uk/gaming-industry-dominates-as-the-highest-grossing-entertainment-industry/">highest-grossing entertainment industry worldwide</a>. With an estimated 6.2 million disabled people in <a href="https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018002-eng.htm">Canada</a>, 61 million disabled people in the <a href="https://www.cdc.gov/ncbddd/disabilityandhealth/disability-inclusion.html">United States</a> and 1.3 billion disabled people <a href="https://www.who.int/news-room/fact-sheets/detail/disability-and-health">worldwide</a>, there is undoubtedly a large group of disabled video game players. </p>
<p>In order to have a truly inclusive and accessible society, disabled people’s rights to meaningfully take part in accessible forms of entertainment, leisure and play <a href="http://doi.acm.org/10.1145/1486508.1486516">must be supported</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/563672/original/file-20231205-23-tvp6st.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="a man in a wheelchair with a game controller" src="https://images.theconversation.com/files/563672/original/file-20231205-23-tvp6st.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/563672/original/file-20231205-23-tvp6st.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/563672/original/file-20231205-23-tvp6st.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/563672/original/file-20231205-23-tvp6st.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/563672/original/file-20231205-23-tvp6st.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/563672/original/file-20231205-23-tvp6st.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/563672/original/file-20231205-23-tvp6st.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">Video games are the highest-grossing entertainment activity, and ignoring the needs of disabled gamers affects their ability to meaningfully participate.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Video game accessibility</h2>
<p>In recent years, Microsoft has been a leader in video game accessibility. In 2018, they were the first major gaming company to release an adaptive controller.</p>
<p>The Xbox Adaptive Controller is a customizable controller that allows players to connect external devices (foot pedals, joysticks, buttons, switches) to ports on the back of the controller. This controller design allows players to <a href="https://arstechnica.com/gaming/2018/05/xbox-adaptive-controller-a-bold-answer-to-the-tricky-world-of-accessible-gaming/">construct their own unique gaming setup</a>. Someone previously unable to hold a controller would now be able to play a game mainly with their feet, for example. </p>
<p>Because controllers require a high amount of dexterity to use, many disabled people (particularly those with mobility impairments) are <a href="https://doi.org/10.1007/s10209-010-0189-5">not able to play video games</a>. <a href="https://www.atia.org/home/at-resources/what-is-at/">Assistive technologies</a> like the Xbox Adaptive Controller help <a href="https://www.researchgate.net/publication/267403944_Game_Not_Over_Accessibility_Issues_in_Video_Games">make video games more accessible</a>. </p>
<p>Disabled players have <a href="https://doi.org/10.5334/csci.128">made their own accessibility solutions</a> for years. The Xbox Adaptive Controller was a massive step forward for video game accessibility because it showed official support for accessibility in gaming from a major video game company.</p>
<h2>Banned third-party controllers</h2>
<p>Microsoft has taken a step back in their efforts to champion video game accessibility with their recent announcement. While they have clarified that devices compatible with the Xbox Adaptive Controller will <a href="https://twitter.com/KaitlynJones_/status/1719668307379278135">not be affected</a>, this does not eliminate all accessibility concerns.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1719668307379278135"}"></div></p>
<p>Disability is individual and varies from person to person. While the Xbox Adaptive Controller may work for many disabled gamers, that does not make it a universal solution that works for all disabled gamers. </p>
<p>The Xbox Adaptive Controller is only one accessibility option among many available to disabled gamers. The ban on third-party controllers means that other accessibility options and <a href="https://www.consoletuner.com/products/titan-two/">devices are now unusable</a> for Xbox players.</p>
<h2>Downsides of the Xbox Adaptive Controller</h2>
<p>The Xbox Adaptive Controller is a great accessibility option — however, it has downsides that other third-party devices may address. One of these downsides is that the Xbox Adaptive Controller is not compatible with all external devices. For example, computer mice are <a href="https://www.reddit.com/r/disabledgamers/comments/11rkazg/xbox_adaptive_controller_mouse/">not compatible</a> with the Adaptive Controller but are with other now-unauthorized <a href="https://www.cronusmax.com/">devices</a>. </p>
<p>Another downside of the Xbox Adaptive Controller is <a href="https://caniplaythat.com/2020/09/24/xbox-adaptive-controller-review-xbox-pc/">the cost</a>. The controller itself <a href="https://www.xbox.com/en-CA/accessories/controllers/xbox-adaptive-controller">costs $130</a>. External buttons and joysticks can also run a high price, with some popular buttons <a href="https://www.ablenetinc.com/big-red/">retailing for $75</a>. This is on top of the initial cost of buying an Xbox, which can range from <a href="https://www.xbox.com/en-CA/consoles/xbox-series-s">$380</a> to <a href="https://www.xbox.com/en-CA/consoles/xbox-series-x">$650</a>.</p>
<p>According to the 2017 <a href="https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018002-eng.htm">Canadian Survey on Disability</a>, disabled individuals are more than twice as likely as non-disabled people to live in poverty. Disabled people also earn 12 to 51 per cent less annually.</p>
<p>While we may not think about the price of assistive technologies like the Xbox Adaptive Controller as an accessibility barrier, it can play a role in limiting the available options for many disabled people.</p>
<h2>Historically overlooked</h2>
<p>The availability of the Xbox Adaptive Controller may make it seem like Microsoft’s ban of third-party controllers will have little effect on disabled players. But the <a href="https://www.ign.com/articles/why-xboxs-third-party-accessories-ban-is-sparking-a-backlash-in-the-disabled-community">backlash from disabled gamers</a> shows this is not true. Disabled players are concerned about the ban’s possible effects on accessibility.</p>
<p>The video game industry has historically <a href="https://doi.org/10.1007/BF03392326">overlooked disabled gamers</a> as a legitimate and sizeable consumer base. The banning of other assistive technology options for disabled gamers is an unfortunate step back in an already long and hard-fought battle for inclusive and accessible gaming.</p><img src="https://counter.theconversation.com/content/217742/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Juan Escobar-Lamanna 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>The Xbox Adaptive Controller is designed to make gaming more inclusive, but Microsoft’s ban on third-party devices means some disabled gamers are still excluded.Juan Escobar-Lamanna, PhD Candidate, Faculty of Information and Media Studies, Western UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2186912023-11-28T19:13:13Z2023-11-28T19:13:13ZThalidomide survivors are receiving an apology for the pharmaceutical disaster that changed pregnancy medicine<p>Prime Minister Anthony Albanese will deliver a <a href="https://www.abc.net.au/news/2023-11-25/canberra-prime-minister-saying-sorry-to-thalidomide-survivors/103110008">national apology</a> to thalidomide survivors and their families today. More than 60 years since the medication had <a href="https://theconversation.com/remind-me-again-what-is-thalidomide-and-how-did-it-cause-so-much-harm-46847">devastating consequences</a> when taken by pregnant women, the apology recognises the government’s role in the tragedy and its enduring impact. </p>
<p>Had the government acted more swiftly to issue public warnings and restrict thalidomide use when concerns were first raised, as many as 20% of Australia’s thalidomide survivors <a href="https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/ThalidomideSurvivors/Report/section?id=committees%2freportsen%2f024272%2f27235">may not have been affected</a>.</p>
<p>Today, protecting pregnant people and the fetus means ensuring there is high quality science to guide medicine use.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/remind-me-again-what-is-thalidomide-and-how-did-it-cause-so-much-harm-46847">Remind me again, what is thalidomide and how did it cause so much harm?</a>
</strong>
</em>
</p>
<hr>
<h2>What is the thalidomide story?</h2>
<p>Thalidomide was developed in the 1950s in Germany. Originally intended for use as a sedative or tranquilliser, by the late 1950s it was soon being widely promoted as a safe and effective treatment for morning sickness in pregnancy. </p>
<p>At the time, it was commonly thought the <a href="https://pubmed.ncbi.nlm.nih.gov/29307240/">placenta would act as a barrier</a> to stopping medicines reaching the fetus in the womb. Animal studies <a href="https://www.sciencemuseum.org.uk/objects-and-stories/medicine/thalidomide">showed</a> low toxicity and no tests were done involving pregnant women.</p>
<p>Thalidomide rapidly become available for use around the world, including the United Kingdom and Australia. The United States famously rejected marketing approval, largely owing to the efforts of <a href="https://www.smithsonianmag.com/science-nature/woman-who-stood-between-america-and-epidemic-birth-defects-180963165/">pharmacologist Frances Kelsey</a> who was concerned about the paucity of safety data available. </p>
<p>As use increased worldwide, so too did reports of babies being born with distinct birth malformations. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4737249/">Thalidomide embryopathy</a> is characterised by shortening of the arms or legs. But when taken in early pregnancy it can also result in sight or hearing loss, facial paralysis and impact to internal organs. </p>
<p>The first public report linking thalidomide to birth malformations was made by an <a href="https://www.bmj.com/content/362/bmj.k3415#:%7E:text=In%20December%201961%2C%20the%20Australian,the%20drug%20thalidomide%20during%20pregnancy.">Australian doctor William McBride</a> in The Lancet journal in 1961. Soon after, the medicine began to be withdrawn from the market. By this time, it was estimated thalidomide led to thousands of miscarriages and deaths of newborns worldwide and left more than 10,000 children with lifelong disability.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1728194421575840032"}"></div></p>
<h2>A careful comeback</h2>
<p>In the last decade thalidomide has made a comeback. Thalidomide is being used in the treatment of <a href="https://www.annalsofoncology.org/article/S0923-7534(20)31037-1/fulltext">certain cancers</a> and other relatively rare conditions such as <a href="https://www.sciencedirect.com/science/article/abs/pii/S1286457902016453?via%3Dihub">leprosy</a>. Most recently, it was investigated as a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7270289/">potential treatment for COVID</a>.</p>
<p>While its return may cause anxiety, there are strict controls limiting its use. This includes requiring people who could get pregnant to take regular pregnancy tests and multiple forms of birth control. </p>
<p>Prescribing thalidomide involves careful counselling and discussion of risks involved. Some may prefer to see thalidomide gone forever. For others, it represents a potential life-changing treatment. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/thalidomide-the-drug-with-a-dark-side-but-an-enigmatic-future-50330">Thalidomide: the drug with a dark side but an enigmatic future</a>
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<h2>Thalidomide changed medicine – for better and worse</h2>
<p>The continued availability of thalidomide raises important ethical questions about how we balance the need to make available effective treatments, while ensuring we protect the most vulnerable.</p>
<p>The thalidomide tragedy represents a significant historical turning point in medicines testing and regulatory oversight. There is now much tighter testing of medicines in both animals and humans before they are marketed and closer scrutiny of their potential side-effects. </p>
<p>But there is a dark side. Thalidomide also gave rise to an ongoing hesitancy towards the testing and use of medicines during pregnancy. This has stifled the critical development of new and existing medicines to treat common life-threatening conditions in pregnancy. Globally, many thousands of women and babies <a href="https://www.who.int/news-room/fact-sheets/detail/maternal-mortality">die each year</a> from conditions such as preterm birth and pre-eclampsia. Yet, in the last 30 years, only one new medication has been developed specifically for use to treat such <a href="https://www.birminghamhealthpartners.co.uk/wp-content/uploads/2022/05/Final-Healthy-Mum-Healthy-Baby-Healthy-Future-Report-AW_Accessible-PDF-REDUCED-FILE-SIZE.pdf">complications</a>. </p>
<p>Such hesitancy was most recently demonstrated during the COVID pandemic where pregnant women were <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(20)30484-8/fulltext">excluded</a> from participating in the first vaccination and treatment clinical trials. This led to uncertainty about how to best protect vulnerable pregnant individuals and their children from the effects of COVID, leading to otherwise <a href="https://www.nature.com/articles/d41586-022-00031-8">avoidable</a> deaths. </p>
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<a href="https://images.theconversation.com/files/562025/original/file-20231128-19-l3ap7p.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Pregnant person hold pill bottle and information leaflet" src="https://images.theconversation.com/files/562025/original/file-20231128-19-l3ap7p.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/562025/original/file-20231128-19-l3ap7p.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/562025/original/file-20231128-19-l3ap7p.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/562025/original/file-20231128-19-l3ap7p.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/562025/original/file-20231128-19-l3ap7p.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/562025/original/file-20231128-19-l3ap7p.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/562025/original/file-20231128-19-l3ap7p.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>
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<span class="caption">The thalidomide disaster led to extreme risk aversion for medications during pregnancy.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/pregnancy-medicine-pharmaceutics-health-care-people-459467371">Shutterstock</a></span>
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<strong>
Read more:
<a href="https://theconversation.com/take-care-with-paracetamol-when-pregnant-but-dont-let-pain-or-fever-go-unchecked-168747">Take care with paracetamol when pregnant — but don't let pain or fever go unchecked</a>
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<h2>What’s next?</h2>
<p>A national apology represents an important step in the healing process for those affected by thalidomide and an opportunity to reflect on its legacy. </p>
<p>The most important legacy should be one of ensuring we have adequate data to support the safe and effective use of medicines in pregnancy, rather than one of excluding pregnant people from research or using medicines. </p>
<p>This requires greater government investment and support into how we develop, evaluate, monitor and guide medicines use in pregnancy. A coordinated national approach across all sectors to <a href="https://www.thelancet.com/action/showPdf?pii=S2666-6065%2823%2900252-3">identify, outline and implement strategies</a> could ensure pregnant people have access to the modern medicines they deserve. Otherwise we risk repeating failures of the past and relegating pregnant people to the status of therapeutic orphans.</p><img src="https://counter.theconversation.com/content/218691/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Luke Grzeskowiak receives funding from the Channel 7 Children's Research Foundation, The Hospital Research Foundation, National Health and Medical Research Council and Medical Research Future Fund. </span></em></p><p class="fine-print"><em><span>Hannah Jackson receives an Australian Government Research Training Program Stipend from the University of Technology Sydney.</span></em></p>The first report linking thalidomide to birth malformations was made by Australian doctor William McBride. The drug led to thousands of instances of pregnancy loss, neonatal deaths and disability.Luke Grzeskowiak, Channel 7 Children's Research Foundation Fellow in Medicines Use and Safety - Flinders University & South Australian Health & Medical Research Institute, Flinders UniversityHannah Jackson, University of Technology SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2184882023-11-24T17:18:26Z2023-11-24T17:18:26ZThere are many reasons disabled people can’t just work from home – threatening to cut their benefits won’t fix the wider problems<figure><img src="https://images.theconversation.com/files/561534/original/file-20231124-25-ywnnnb.jpg?ixlib=rb-1.1.0&rect=152%2C206%2C5838%2C3781&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/portrait-asian-businesswoman-sitting-working-hard-2256422063">PBXStudio/Shutterstock</a></span></figcaption></figure><p>As part of the UK government’s latest economic plan, disabled people may <a href="https://www.gov.uk/government/news/new-chance-to-work-guarantee-will-remove-barriers-to-work-for-millions">have to look</a> for jobs they can do from home or face cuts to their benefits. Previously, disabled people with limited ability to work may have received benefits without being required to look for work. Now, Laura Trott, chief secretary to the Treasury, has said that disabled people not in work must “do their duty” and work from home.</p>
<p>While more disabled people have found work over the past decade (mirroring more general increases in employment), there remains a significant employment gap. In <a href="https://researchbriefings.files.parliament.uk/documents/CBP-7540/CBP-7540.pdf">January to March 2023</a>, 53.7% of disabled people were in employment compared with 82.7% of non-disabled people. </p>
<p>Getting more disabled people into work just isn’t that simple. A stick-only approach is likely to make things worse for tens of thousands of people, whose incomes, physical and mental health are already affected more by the <a href="https://www.scope.org.uk/campaigns/research-policy/cost-of-living-report/#:%7E:text=We%20are%20in%20the%20middle,decisions%20about%20what%20to%20prioritise.">cost of living crisis</a>.</p>
<p>Work is not a tap that can simply be turned on or off. There are many factors already making it difficult for disabled people to find good jobs. Inflexible working practices, discrimination and a lack of <a href="https://www.acas.org.uk/reasonable-adjustments">reasonable adjustments</a>, such as providing specialised equipment, are barriers that will not be fixed by requiring people to work from home.</p>
<h2>There aren’t enough remote jobs</h2>
<p><a href="https://www.lancaster.ac.uk/media/lancaster-university/content-assets/documents/lums/work-foundation/TheChangingWorkplace.pdf">Our recent study</a> found that disabled people greatly valued having access to hybrid and remote working. And 80% regarded having access to remote working as essential or very important factors when looking for a new job. Disabled women, carers and people with multiple impairments in particular considered remote working as essential. As one of our participants said:</p>
<blockquote>
<p>I have a quiet and comfortable environment at home. I can concentrate much better and I can rest when I need to. This has had a major positive impact on my health and confidence in my work. I’m much more productive and have a much more positive attitude about myself and work in general.</p>
</blockquote>
<p>But there simply aren’t enough remote jobs to go around. A glance at the government’s <a href="https://findajob.dwp.gov.uk/">“find a job” website</a> on the day of the autumn statement showed that only 1,413 out of over 140,000 jobs fit the description of working from home. Most jobs required applicants to work some days on-site.</p>
<p>It is unlikely then that the thousands of disabled people facing sanctions will successfully find remote employment, not least because disabled people are competing with all other workers for these jobs too.</p>
<p>Even before this announcement, the lack of enough fully remote jobs meant disabled people often could not obtain secure jobs with enough flexibility in them, therefore opting into poor quality, insecure jobs, such as zero-hour contract roles. This is why <a href="https://www.lancaster.ac.uk/work-foundation/publications/the-disability-gap-insecure-work-in-the-uk">disabled workers</a> in the UK are 1.5 times more likely to be in severely insecure work than non-disabled workers.</p>
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Read more:
<a href="https://theconversation.com/what-the-uk-governments-back-to-work-plan-covers-and-why-it-is-unlikely-to-boost-peoples-job-prospects-218076">What the UK government's back to work plan covers – and why it is unlikely to boost people's job prospects</a>
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<h2>Home working is not always viable</h2>
<p>Additionally, just because a job is remote does not mean it is accessible or available to disabled workers. </p>
<p>Lack of access to inclusive education means that disabled young people tend to have <a href="https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/outcomesfordisabledpeopleintheuk/2021/pdf#:%7E:text=In%20addition%2C%20disabled%20people%20were,%2Ddisabled%20people%20(17.4%25)%5D">fewer qualifications</a> than non-disabled peers. Those with a degree are less likely than non-disabled graduates to move into permanent work <a href="https://www.agcas.org.uk/write/MediaUploads/Resources/Disability%20TG/AGCAS_What_Happens_Next_2021_-_February_2021.pdf">appropriate to their qualifications</a>.</p>
<p>As a result, disabled people are <a href="https://www.gov.uk/government/statistics/the-employment-of-disabled-people-2022/employment-of-disabled-people-2022#employment-1">over-represented</a> in lower-skilled and lower-paid jobs that cannot be done remotely. These barriers leave many in a situation in which they are under-qualified for a number of remote working positions, but also unable to work on-site due to the nature of their conditions.</p>
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<img alt="A man at a home working desk rests his head on the desk in front of his computer" src="https://images.theconversation.com/files/561531/original/file-20231124-22-eu23lh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/561531/original/file-20231124-22-eu23lh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/561531/original/file-20231124-22-eu23lh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/561531/original/file-20231124-22-eu23lh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/561531/original/file-20231124-22-eu23lh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/561531/original/file-20231124-22-eu23lh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/561531/original/file-20231124-22-eu23lh.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">Just because a job is remote does not mean it is accessible.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/burnout-work-tired-fatigued-office-worker-1773915317">Girts Ragelis/Shutterstock</a></span>
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<p>For some people, the home environment is not suitable for remote working. Younger people in lower-paid roles may live in shared accommodation without dedicated office space, a particular problem for workers who need specialist equipment.</p>
<p>Working from home <a href="https://www.lancaster.ac.uk/media/lancaster-university/content-assets/documents/lums/work-foundation/TheChangingWorkplace.pdf">can be isolating</a>, and some disabled people have reported they are concerned that being fully remote means they may lose out on development opportunities, pay and progression due to being less visible than on-site colleagues. This may exacerbate the existing lack of representation for disabled workers at the managerial level, and gives employers less incentive to make accessibility adjustments for on-site disabled workers.</p>
<p>Mandating unemployed disabled people into remote roles could lead to a greater uptake of poor quality, insecure and temporary jobs, with detrimental consequences for their health.</p>
<h2>What would a better approach look like?</h2>
<p>In our <a href="https://wp.lancs.ac.uk/inclusive-working/">ongoing study funded by the Nuffield Foundation</a>, we, along with colleagues Alison Collins, Jacqueline Winstanley and Alice Martin, are researching how employers can design working practices to be inclusive. </p>
<p>Forcing disabled workers into any kind of job will be counterproductive if it undermines health, wellbeing and job satisfaction. Remote and on-site workers need to have equal access to development and training opportunities so that remote workers’ careers don’t stall. </p>
<p>Organisations need to invest in the right technology so that meetings involving both in-person and remote employees are easier to navigate. And disabled people who need adapted or specialist equipment to do their job must have that equipment in whichever location they work in.</p>
<p>Threatening people with sanctions is not a sensible approach that addresses any of these issues, and is certainly not as simple as the government suggests. And telling vulnerable people to “do their duty” without significant investment in making work actually accessible is insidious language that undermines the possibility of an inclusive society.</p><img src="https://counter.theconversation.com/content/218488/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paula Holland receives funding from the Nuffield Foundation. </span></em></p><p class="fine-print"><em><span>Calum Carson receives funding from the Nuffield Foundation.</span></em></p><p class="fine-print"><em><span>Rebecca Florisson receives funding from the Nuffield Foundation. </span></em></p>There aren’t enough remote jobs to go around.Paula Holland, Senior Lecturer in Public Health, Lancaster UniversityCalum Carson, Senior Research Associate, Lancaster UniversityRebecca Florisson, Principal Analyst (Work Foundation), Lancaster UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2178392023-11-23T03:22:45Z2023-11-23T03:22:45ZA tussle between the federal and state governments over disability supports is looming. What should happen next?<p>Over the ten years since the <a href="https://www.ndis.gov.au/">National Disability Insurance Scheme</a> (NDIS) was launched, its design, operations and costs have been scrutinised by governments, the media, the legal system, researchers and people with disability and their advocates. </p>
<p>More than <a href="https://data.ndis.gov.au/explore-data">610,000 Australians</a> receive NDIS funding to purchase support and services to meet their disability-related needs. But the overwhelming majority of the <a href="https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/summary">4.4 million people with disability in Australia</a> are not NDIS participants. Whether and how their needs are met outside the NDIS has huge implications for the scheme’s future.</p>
<p>That issue sits at the heart of the <a href="https://www.ndisreview.gov.au/">NDIS review</a>. The review’s findings and recommendations have not yet been publicly released, but NDIS Minister Bill Shorten and the review’s co-chairs have already <a href="https://www.smh.com.au/politics/federal/shorten-flags-autism-changes-says-ndis-can-t-be-surrogate-school-system-20231120-p5elci.html">called</a> for state and federal services outside the scheme to step up supports. </p>
<p>What fell away when the NDIS was rolled out? And what are the chances of such services being revived? </p>
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<p>
<em>
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Read more:
<a href="https://theconversation.com/i-want-to-get-bogged-at-a-beach-in-my-wheelchair-and-know-people-will-help-micheline-lee-on-the-way-forward-for-the-ndis-213348">'I want to get bogged at a beach in my wheelchair and know people will help'. Micheline Lee on the way forward for the NDIS</a>
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<h2>How the NDIS ate other supports</h2>
<p>Under the NDIS, many people have been able to get the support they need for the first time. </p>
<p>However, the movement of money from Commonwealth, state and territory governments to the NDIS meant people with disability who do not meet the scheme’s eligibility criteria <a href="https://www.aph.gov.au/About_Parliament/Parliamentary_departments/Parliamentary_Library/FlagPost/2022/August/Disability_support_outside_the_NDIS">lost access to some supports</a>. The introduction of the NDIS also impacted the <a href="https://apo.org.au/node/319016">costs and availability of services</a>. </p>
<p>What was glossed over in the transition to the NDIS was community, social and economic inclusion of all Australians with disability. As money flowed from other parts of government to the NDIS, there were no clear answers on how this cornerstone of the scheme should be delivered and funded.</p>
<h2>An oasis surrounded by desert</h2>
<p>Demand for support from the NDIS has outstripped all forecasts, putting pressure on the <a href="https://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22library%2Fbudget%2F2023_01%22">federal budget</a>. But government has shown little will to tackle what is driving its growth.</p>
<p><a href="https://percapita.org.au/blog/our_work/not-a-one-stop-shop-the-ndis-in-australias-social-infrastructure/">Slow progress</a> on improving accessibility in “mainstream” services and the <a href="https://disability.unimelb.edu.au/home/projects/support-outside-ndis">erosion</a> of access to supports like home and community care and <a href="https://consortium-psy.com/jour/article/view/44">community mental health services</a> have left the NDIS an “<a href="https://www.pc.gov.au/inquiries/completed/ndis-costs/report/ndis-costs.pdf">oasis of support</a>, surrounded by a desert where little or nothing is available”. </p>
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Read more:
<a href="https://theconversation.com/australias-rates-of-autism-should-be-celebrated-but-real-life-impact-not-diagnosis-should-determine-ndis-support-217921">Australia's rates of autism should be celebrated – but real-life impact, not diagnosis, should determine NDIS support</a>
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<p><a href="https://apo.org.au/node/319016">Research in 2022</a> revealed people with disability and their families were navigating disconnected and incomplete service markets, with inconsistent eligibility criteria. There were gaps in data informing policy. People without NDIS funding were relying heavily on family support and personal resources. In surveys for this research, 90% of people with disability outside the NDIS said they were unable to find the support they needed. </p>
<p>States have already said they need more funding to support people with disability outside the NDIS. That has to be a whole-of-government conversation.</p>
<p>When people with disability and their families cannot find or afford the support they need, and exhaust their own resources to the point of crisis, they ultimately need higher levels of support from the NDIS and government across the board.</p>
<p>We need a graduated support system for people with disability between being in or out of the NDIS. </p>
<h2>A shakeup is likely</h2>
<p>The NDIS review’s final report is likely to be <a href="https://www.dss.gov.au/sites/default/files/documents/11_2023/communique3november20232.pdf">publicly released in December</a>, after National Cabinet has met to consider its recommendations. </p>
<p>The review has already signalled it will call for <a href="https://www.ndisreview.gov.au/resources/speech/magic-pudding-dilemma">coordinated effort and investment</a> across government. Review co-chair Bruce Bonyhady <a href="https://www.summerfoundation.org.au/resources/reasonable-and-necessary-podcast-series-2/">recently said</a> there would be more focus on support needs rather than functional impairment in decisions about what is <a href="https://www.ndis.gov.au/understanding/supports-funded-ndis/reasonable-and-necessary-supports">reasonable and necessary</a> for the NDIS to fund. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1674724662876553223"}"></div></p>
<p>The review is likely to propose a new disability <a href="https://federation.gov.au/resources/agreements">inter-governmental agreement</a> to encourage governments to develop and implement a foundational supports investment strategy for all people with disability together. </p>
<p>It is also likely to call for national commitments to deliver more effective supports for children who are slow to reach one or more developmental milestones compared to their peers – described as “<a href="https://www.ndis.gov.au/understanding/families-and-carers/early-childhood-approach-children-younger-9/developmental-delay-and-early-childhood-approach">developmental delay</a>” - and for people with disability linked to <a href="https://www.ndis.gov.au/understanding/how-ndis-works/mental-health-and-ndis">mental health</a>. </p>
<p>Translating those recommendations into action across federal, state, territory and local governments won’t be easy. </p>
<h2>What should change? What should come back?</h2>
<p>The NDIS review may finally force clarification of roles and responsibilities for funding and delivering services and supports between the NDIS and key policy areas like health, education, employment, early childhood, justice, transport, housing and aged care that cross government jurisdictions. </p>
<p>It may also clarify the relationship between the NDIS and <a href="https://www.disabilitygateway.gov.au/ads/strategy">Australia’s Disability Strategy 2021-2031</a>, which is intended to provide national leadership to drive mainstream services and systems to improve outcomes for people with disability. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/should-people-who-had-disability-before-they-turned-65-be-allowed-to-become-ndis-participants-after-65-we-asked-5-experts-216740">Should people who had disability before they turned 65, be allowed to become NDIS participants after 65? We asked 5 experts</a>
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<p>There have been numerous references throughout the review to a need for more access to home and community supports, to reduce the likelihood of people needing higher-cost individual supports. </p>
<p>We may also see a return to block-funding for some widely used supports to achieve economies of scale lost in individual purchasing models. </p>
<h2>From diagnosis to inclusion</h2>
<p>Service systems such as disability employment services and specialist schools, which parallel universal services, highlight <a href="https://disability.royalcommission.gov.au/publications/final-report-volume-7-inclusive-education-employment-and-housing">tensions</a> between how governments talk about inclusion and how services and supports for people with disability are designed and funded on the basis of diagnosis. </p>
<p>We have to explore new ways to design and fund services, drawing on the knowledge and expertise of people with disability, and address evidence gaps to better inform policy. </p>
<p>Looming negotiations between federal and state governments about who should pay for what in that landscape are likely to be tense and protracted. But people with disability must not be reduced to “costs” in that tussle. </p>
<p>The biggest lesson from the NDIS review may well be that governments cannot continue to treat 20% of Australians as outliers in designing universal services.</p><img src="https://counter.theconversation.com/content/217839/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sue Olney 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>What fell away when the NDIS was rolled out? And what are the chances of such services being revived?Sue Olney, UoM-BSL Principal Research Fellow, School of Social and Political Sciences, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2168382023-11-22T14:35:36Z2023-11-22T14:35:36ZPatients’ beliefs about illness matter: the case of elephantiasis in rural Ghana<p>Would you take medication for an illness you didn’t believe you had? Or if you disagreed with healthcare workers about the cause of your condition? </p>
<p>This is the dilemma of many people who live in areas of Ghana where a mosquito-borne disease called <a href="https://www.who.int/news-room/fact-sheets/detail/lymphatic-filariasis#:%7E:text=Lymphatic%20filariasis%2C%20commonly%20known%20as,damage%20to%20the%20lymphatic%20system">lymphatic filariasis</a>, often referred to as elephantiasis, continues to spread. </p>
<p>Lymphatic filariasis, or LF as it is commonly known, is a neglected tropical disease which spreads through repeated bites by parasite-carrying mosquitoes. This infection results in the painful and debilitating swelling of legs, arms and genitals, and increases vulnerability to injury and secondary infections. </p>
<p>Although little known, lymphatic filariasis is a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3246437">significant</a>
and <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(20)30323-5/fulltext">under-addressed</a> global cause of disability. According to the World Health Organization at least<a href="https://www.who.int/news-room/fact-sheets/detail/lymphatic-filariasis"> 51 million</a> people are infected with lymphatic filariasis. </p>
<p>The World Health Organization’s <a href="https://www.who.int/teams/control-of-neglected-tropical-diseases/lymphatic-filariasis/global-programme-to-eliminate-lymphatic-filariasis">Global Programme for Elimination of Lymphatic Filariasis</a> has greatly reduced the burden of the disease through preventive mass drug campaigns, mosquito control, veterinary public health and sanitation and hygiene measures.</p>
<p>Despite this concerted effort, however, lymphatic filariasis continues to be endemic and require mass drug administration in <a href="https://academic.oup.com/inthealth/article/13/Supplement_1/S22/6043665">31</a> African countries. The challenges to eradicating it are not well understood, and may hinge on better understanding how people with this disease view their condition. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-its-hard-to-end-elephantiasis-a-debilitating-disease-spread-by-mosquitoes-166627">Why it's hard to end elephantiasis, a debilitating disease spread by mosquitoes</a>
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</em>
</p>
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<p>Our research team brings together specialists in epidemiology, public health and human rights. In our recently published paper in <a href="https://journals.plos.org/globalpublichealth/article?id=10.1371/journal.pgph.0002476">PLOS Global Public Health</a> we take a different approach to the conventional medical focus that dominates research and interventions for this disease. </p>
<p>We examined the local perceptions and beliefs about the disease
and the personal experiences of those living with it in three rural communities in Ghana’s Ahanta West district. This coastal district in Ghana’s Western Region has a high rate of lymphatic filariasis infection and many people living with advanced stages of the disease. </p>
<p>Members of our research team had worked in this area for more than a decade, establishing the trust relationships that made this research possible.</p>
<p>Our findings may help provide insight into why lymphatic filariasis persists in certain settings and how best to tackle it.</p>
<h2>Cold, rain and curses</h2>
<p>We found that only <a href="https://journals.plos.org/globalpublichealth/article?id=10.1371/journal.pgph.0002476">18%</a> of respondents understood lymphatic filariasis as a disease. Fewer than 7% believed it to be a disease spread by mosquitoes. </p>
<p>Instead, people held a range of alternative beliefs attributing the condition to other sources, including spiritual causes (curses, witchcraft, evil spirits), cold or rainy weather, and other illnesses. In subsequent interviews, people described how, from their perspective, they encountered the disease. </p>
<p>One person explained, “When you are cold, then your leg gets swollen.” </p>
<p>Another noted, “There are some who just get jealous of and develop hatred for people for just walking and going about their normal duties and decide that they do not want this person or that person to progress, hence they buy the disease for them spiritually.” They added, “I strongly believe and have the conviction that someone bought mine for me spiritually.”</p>
<p>In contrast with these beliefs, which show very limited overlap with medical explanations, nearly half (<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6709921">45.8%</a>) of respondents reported receiving information about the disease from healthcare workers or drug campaigns. </p>
<p>These findings suggest we need to learn more about local beliefs in health and wellbeing in order to achieve more effective communication with patients. </p>
<p>Our research also demonstrates lymphatic filariasis is not only a medical condition, but also a social and economic one. </p>
<h2>Ashamed and stigmatised</h2>
<p>Almost <a href="https://journals.plos.org/globalpublichealth/article?id=10.1371/journal.pgph.0002476">80%</a> of respondents reported feeling ashamed or stigmatised by their condition. Some said it restricted their social lives and their willingness to go out in public. </p>
<p>Infection also limited the ability to earn a living. More than a third (<a href="https://journals.plos.org/globalpublichealth/article?id=10.1371/journal.pgph.0002476">36.2%</a>) said they could no longer work due to their condition. Many reported a need to depend on others for financial support. </p>
<p>Among those surveyed less than 3% reported that they were “doing well”. </p>
<p>These findings show an urgent need to address the unmet social, mental health and economic impacts of lymphatic filariasis.</p>
<h2>What needs to be done</h2>
<p>Drug campaigns are important but cannot be done in isolation. Existing research shows us that these <a href="https://academic.oup.com/inthealth/article/13/Supplement_1/S55/6043672">are more successful when offered in a broader context of care</a>. </p>
<p>Healthcare workers must be trained to avoid stigmatising patients. But eliminating stigma is not a simple task, nor can it be left to healthcare workers alone.</p>
<p>Further research is needed to better understand local beliefs about lymphatic filariasis, and to understand how stigma affects patients’ access to treatment and quality of life. This must include the strong links between the disease and poverty. </p>
<p>Lymphatic filariasis follows <a href="https://www.who.int/publications/i/item/WHO-IER-CSDH-08.1">the “social gradient”</a>. Those who are poorest are most likely to be affected. Factors associated with poverty increase the chances of being infected and of developing complications. These factors include poor quality housing, limited access to methods of prevention (mosquito nets, good quality footwear), difficulty getting medical care, living in remote rural communities, and working as subsistence farmers.</p>
<p>The disease also pushes poor people <a href="https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-021-10170-8">further into poverty</a> as it progresses.</p>
<p>As the number of people affected by it decreases, those who are left behind are more and more likely to be isolated, marginalised, stigmatised and impoverished. </p>
<p>As we argue in a <a href="https://www.taylorfrancis.com/chapters/edit/10.4324/9781003207672-15/examining-research-positionality-understanding-self-first-step-transnational-research-colleen-mcmillan-alexander-kwarteng-kristi-kenyon-mary-asirifi">recent book chapter</a>, these factors underscore the need for interdisciplinary research teams who are able to address lymphatic filariasis holistically. We need an approach that merges healthcare, health promotion, health systems, spiritual beliefs, social and cultural context, gender dynamics and economic impact. </p>
<p>We must put people with lymphatic filariasis – and their dignity – at the centre of research.</p><img src="https://counter.theconversation.com/content/216838/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kristi Heather Kenyon receives funding from the Canadian Institutes for Health Research.</span></em></p><p class="fine-print"><em><span>Alexander Kwarteng receives funding from the Canadian Institutes of Health Research</span></em></p><p class="fine-print"><em><span>Dr Colleen McMillan receives funding from the Canadian Institutes of Health Research. </span></em></p><p class="fine-print"><em><span>Mary Asirifi works for MacEwan University. She receives funding from CIHR. </span></em></p><p class="fine-print"><em><span>Regiane Garcia receives funding from Canadian Health Institutes Research</span></em></p>In rural Ghana, only 18% of patients believe elephantiasis is a disease. Some others think it is caused by curses or even rain. Only by understanding local beliefs can it be treated effectively.Kristi Heather Kenyon, Associate Professor, Human Rights, University of WinnipegAlexander Kwarteng, Senior Lecturer in Immunology of Infectious Diseases, Kwame Nkrumah University of Science and Technology (KNUST)Colleen McMillan, Scientific Co-Director and Associate Professor, University of WaterlooMary Asirifi, Assistant Professor, Department of Nursing Foundations, MacEwan UniversityRegiane Garcia, Research Associate, focus on health rights, laws and policies, Simon Fraser UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2171552023-11-20T21:11:36Z2023-11-20T21:11:36ZThe 15-minute city is a popular planning approach, but relies on ableist assumptions<figure><img src="https://images.theconversation.com/files/559829/original/file-20231116-20-8b0gta.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C6000%2C3988&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Designing cities around the amount of time needed to reach services and amenities is a popular planning approach.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/the-15-minute-city-is-a-popular-planning-approach-but-relies-on-ableist-assumptions" width="100%" height="400"></iframe>
<p>The 15-minute city is a popular urban planning concept that promotes people living close to essential services, and encourages the use of walking and biking. Public transit is sometimes included in the transport mix, preferred to automobiles, which are largely absent.</p>
<p>Developed around 2016 by Paris-based urbanist <a href="https://www.moreno-web.net/">Carlos Moreno</a>, the idea of the 15-minute city has spread globally. Moreno subscribes to <a href="https://doi.org/10.1177/0961463X14535905">chrono-urbanism</a>, or the idea of organizing cities around time including the 15-minute city.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/TQ2f4sJVXAI?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Urbanist Carlos Moreno describes the 15-minute city approach.</span></figcaption>
</figure>
<p>For his work, Moreno has received numerous accolades and negative attention, particularly from the political <a href="https://www.nytimes.com/2023/03/28/technology/carlos-moreno-15-minute-cities-conspiracy-theories.html">right and conspiracy theorists</a> claiming it will restrict people’s <a href="https://apnews.com/article/fact-check-15-minute-city-conspiracy-162fd388f0c435a8289cc9ea213f92ee">freedom of movement</a>.</p>
<p>Moreno isn’t the only contemporary urbanist who thinks about time as a key organizing principle for the design of sustainable cities. Variations on the theme include: <a href="https://doi.org/10.1016/j.jth.2019.05.005">15-minute walkable neighbourhoods</a>, the <a href="https://www.mdpi.com/2071-1050/12/1/129">20-minute city</a>, the <a href="https://ses.library.usyd.edu.au/handle/2123/21630">30-minute city</a>, and so on. </p>
<p>None of these, however, have gained as much traction as the 15-minute city. Moreno’s work has been plugged into the global <a href="https://doi.org/10.3390/smartcities4010006">conversation about UN Sustainable Development Goal 11</a>: making cities and communities “<a href="https://sdgs.un.org/goals/goal11">inclusive, safe, resilient and sustainable</a>.”</p>
<p>Can one planning concept possibly lead us toward sustainable and inclusive urban futures? </p>
<h2>Health, time and the past</h2>
<p>One unifying feature of the 15-minute city — or 20-, or 30-minute city — seems to be that by making most everyday activities doable by moving actively over shorter distances, we will become healthier. Research has already shown that <a href="https://doi.org/10.1016/j.tranpol.2015.04.005">driving less will likely produce health benefits for some people</a>. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/heart-health-design-cities-differently-and-it-can-help-us-live-longer-162038">Heart health: design cities differently and it can help us live longer</a>
</strong>
</em>
</p>
<hr>
<p>Another area of consensus appears to be that these approaches, employed globally, will successfully treat our <a href="https://www.taylorfrancis.com/chapters/edit/10.4324/9780203107683-1/understanding-twenty-first-century-urban-transformation-elliott-sclar-nicole-volavka-close">largely urban</a> and catastrophic engagement with the environment. </p>
<p>While the 15-minute city might be considered revelatory by some, the relationship between cities and time is as old as cities. In the North American context, before the car and before and during the <a href="https://utorontopress.com/9781442679351/ride-to-modernity/">bike boom of the 1890s</a>, amenities and services were located close to where people lived.</p>
<h2>Ableism and disability</h2>
<p>I think about planning, cities and transportation through a critical ableist and disability studies lens. My lived experience as a parent of a disabled child also informs my <a href="https://doi.org/10.1080/09687599.2023.2279488">research on urban accessibility</a>. </p>
<p>When considering the 15-minute city, I think about the relationship between <a href="https://doi.org/10.1057/dev.2008.17">ableism</a> — the practices and abilities considered <a href="https://doi.org/10.4324/9780203366974">normative by society</a> and the social model of disability. The <a href="https://doi.org/10.1007/978-1-349-86058-6">social model of disability</a> — one of several frameworks — is the idea that disability is produced by discriminatory barriers in society. Ableism produces disability.</p>
<p>The 15-minute city relies on residents’ abilities to walk and bike. This raises several questions: What if a resident’s body <a href="https://doi.org/10.18061/dsq.v42i1.8276">doesn’t walk or bike</a> in what is considered a normative sense? What if someone <a href="https://doi.org/10.1016/j.jtrangeo.2022.103521">uses a mobility device or moves at a slower pace</a>? What if a resident requires <a href="https://doi.org/10.1016/j.tra.2021.04.005">public or school transportation vehicles to be adapted</a>? </p>
<p>There is no universality to 15 minutes spent in any city. Marginalized people, for example, are more likely to be <a href="https://doi.org/10.1016/j.jtrangeo.2021.103003">harassed</a> or <a href="https://doi.org/10.1016/j.jtrangeo.2023.103576">over-policed</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="a green wall with handwritten graffiti saying 15 MINUTE CITIES R EVIL WILL TAKE OUR FREEDOM" src="https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.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">Graffiti in a Weston-super-Mare, U.K. bus shelter referring to conspiracy theories about 15-minute cities.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Planning policy and regulation</h2>
<p>Urban planning and city building occur with a regulatory context. The 15-minute city is unlikely to materialize without professional scrutiny and regulatory compliance. </p>
<p>In Ontario, the <a href="https://www.ontario.ca/laws/statute/05a11">Accessibility for Ontarians with Disabilities Act</a>, the <a href="https://www.ontario.ca/laws/regulation/110191">Integrated Accessibility Standards Regulation</a>, the <a href="https://www.ontario.ca/laws/regulation/120332">Ontario Building Code</a> and zoning by-laws regulate accessibility in cities. The <a href="https://www.ohrc.on.ca/en/ontario-human-rights-code">Ontario Human Rights Code</a> — which prohibits discrimination — protects the right of equal access to services. </p>
<p>The details of this regulatory environment reveal an emphasis on physical disability and serious <a href="https://aoda.ca/recommendations-in-the-third-review-of-the-aoda/">limitations</a> in terms of revision and enforcement. It would therefore be foolish to rely on such a relatively inflexibly narrow regulatory environment to make up for any ableist limitations of planning concepts used to shape sustainable, inclusive urban futures. </p>
<h2>Educating planners</h2>
<p>Disability is often an <a href="https://doi.org/10.1177/0739456X231175595">afterthought in planning education and practice</a>. Perhaps this reflects a lack of representation of disability, and disabled persons in planning education and professional practice. </p>
<p>Designing sustainable, inclusive urban futures, however, requires inclusive education, thinking, rhetoric and design from the beginning. My challenge to those involved in urban design and planning — including planners, engineers, geographers and architects — is to consider what cities or neighbourhoods might look like when <a href="https://www.routledge.com/Doing-Disability-Differently-An-alternative-handbook-on-architecture-disability/Boys/p/book/9780415824958">designed</a> with <a href="https://www.upress.umn.edu/book-division/books/the-architecture-of-disability">disability in mind</a>.</p><img src="https://counter.theconversation.com/content/217155/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ron Buliung 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>The idea of the 15-minute city has become popular globally. But this approach relies on ableist assumptions and doesn’t reflect inclusive urban design.Ron Buliung, Professor, Department of Geography, Geomatics and Environment, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2178022023-11-20T19:00:45Z2023-11-20T19:00:45ZAs homeschooling numbers keep rising in Australia, is more regulation a good idea?<figure><img src="https://images.theconversation.com/files/560266/original/file-20231119-15-hczh37.jpg?ixlib=rb-1.1.0&rect=32%2C43%2C7206%2C4786&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.pexels.com/photo/mother-helping-her-daughter-with-homework-4260475/">August De Richelieu/Pexels</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span></figcaption></figure><p>The number of families choosing to homeschool in Australia and <a href="https://nasenjournals.onlinelibrary.wiley.com/doi/full/10.1111/1467-8578.12468">around the world</a> keeps growing.</p>
<p>New data from Queensland <a href="https://qed.qld.gov.au/our-publications/reports/statistics/Documents/home-education-registrations.pdf">released last week</a> show there has been a 20% increase over the past year, with 10,048 registered homeschoolers up from 8,461. Over the last five years, there has been a 152% growth in primary students and 262% growth in high school students who are home schooled in the state. </p>
<p>At the same time, Queensland is <a href="https://www.couriermail.com.au/subscribe/news/1/?sourceCode=CMWEB_WRE170_a_GGL&dest=https%3A%2F%2Fwww.couriermail.com.au%2Fqueensland-education%2Fqld-homeschooling-crackdown-looms-as-parents-fail-to-make-grade%2Fnews-story%2Fdb318404cf763488e7c48fab53b4c4e7&memtype=anonymous&mode=premium&v21=GROUPA-Segment-1-NOSCORE">looking at</a> “cracking down” on parents who home school. </p>
<p>There are concerns homeschooling needs more regulation because parents only have to report once a year and are not subjected to testing such as NAPLAN. Is this what we need?</p>
<h2>Homeschooling across Australia</h2>
<p>In <a href="https://educationstandards.nsw.edu.au/wps/wcm/connect/7281cfd6-b3e4-4346-ae2c-33e63e8e6106/home-schooling-data-reports-relating-to-2022.pdf?MOD=AJPERES&CVID=">New South Wales</a> 12,359 students were registered for homeschooling in January 2023, a 37% jump on the 2022 figures. </p>
<p>In <a href="https://www.vrqa.vic.gov.au/aboutus/Pages/homeschoolingstatistics2020.aspx#:%7E:text=Home%20schooling%20in%202022,their%20children%20for%20home%20schooling.">Victoria</a>, the most recent figures show there were 11,912 homeschooled students as of December 2022, an increase of 36% since 2021. </p>
<p>Across the country, I estimate, based on state and territory data, there are more than 43,000 legally registered homeschooled students. This does not include students whose parents <a href="https://theconversation.com/homeschooling-boomed-last-year-but-these-4-charts-show-it-was-on-the-rise-before-covid-157309">do not register them</a> with their state or territory education departments, even though it is a legal requirement. </p>
<p>Estimates on the numbers who do not register vary. Some home education curriculum providers suggest there are as many <a href="https://euka.edu.au/all-resources/why-is-homeschooling-on-the-rise-in-australia/#:%7E:text=As%20of%202019%2C%20there%20are,enrolled%20in%20distance%20education%20either.">unregistered students</a> as there are registered students. Accurate figures are difficult because families are reluctant to admit they are not meeting their legal requirements.</p>
<figure class="align-center ">
<img alt="Two young children work at a desk with books and pens." src="https://images.theconversation.com/files/560270/original/file-20231119-21-gz39av.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/560270/original/file-20231119-21-gz39av.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/560270/original/file-20231119-21-gz39av.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/560270/original/file-20231119-21-gz39av.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/560270/original/file-20231119-21-gz39av.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/560270/original/file-20231119-21-gz39av.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/560270/original/file-20231119-21-gz39av.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">There are more than 43,000 students registered for homeschool in Australia.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/children-doing-their-homework-6248432/">Kampus Production/Pexels</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
</figcaption>
</figure>
<h2>Why are numbers growing?</h2>
<p>A 2023 <a href="https://education.qld.gov.au/schools-and-educators/other-education/Documents/research-insight-report.pdf">Queensland government report</a> shared data from a survey of more 500 parents in the state who homeschooled their children. </p>
<p>It found 45% of families surveyed never intended to homeschool. It also found 61% had a child with a disability or health issue, including ADHD, autism, behavioural issues and mental ill health. Many also had concerns about bullying. </p>
<p>Families also reported their child was not learning at school, and not wanting to go, so homeschooling became the only choice available.</p>
<p>This reflects academic research, which finds most families who choose to homeschool have <a href="https://web.s.ebscohost.com/ehost/pdfviewer/pdfviewer?vid=0&sid=02adef93-84d0-4ec7-83ba-1b7150d7ea7d%40redis">negative school experiences</a>, withdraw because of <a href="https://eprints.qut.edu.au/238245/">bullying</a> or are <a href="https://www.tandfonline.com/doi/pdf/10.1080/00131911.2020.1728232">neurodiverse</a>.</p>
<p>While <a href="https://theconversation.com/homeschooling-boomed-last-year-but-these-4-charts-show-it-was-on-the-rise-before-covid-157309">homeschooling was growing</a> before the pandemic, the school-at-home arrangements during COVID led to a <a href="https://www.abc.net.au/news/2022-01-25/queensland-home-school-registrations-soar-during-covid-19-/100778840">large growth</a> in numbers. For some families, the experience showed them learning at home was <a href="https://brill.com/display/book/9789004532571/BP000013.xml">possible and enjoyable</a> and they <a href="https://www.frontiersin.org/articles/10.3389/fpsyg.2020.588667/full">decided</a> not to go back.</p>
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Read more:
<a href="https://theconversation.com/he-was-in-fear-of-his-life-bullying-can-be-a-major-factor-in-deciding-to-homeschool-193621">'He was in fear of his life': bullying can be a major factor in deciding to homeschool</a>
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<h2>What do homeschooling parents need to do?</h2>
<figure class="align-left ">
<img alt="A young child sits at a desk, typing on a computer." src="https://images.theconversation.com/files/560276/original/file-20231120-19-jc4sns.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/560276/original/file-20231120-19-jc4sns.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=900&fit=crop&dpr=1 600w, https://images.theconversation.com/files/560276/original/file-20231120-19-jc4sns.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=900&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/560276/original/file-20231120-19-jc4sns.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=900&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/560276/original/file-20231120-19-jc4sns.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1131&fit=crop&dpr=1 754w, https://images.theconversation.com/files/560276/original/file-20231120-19-jc4sns.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1131&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/560276/original/file-20231120-19-jc4sns.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">
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<span class="caption">Most parents who homeschool their kids are not qualified teachers.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/woman-in-blue-crew-neck-shirt-using-black-laptop-computer-3994051/">Alexander Grey/Pexels</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
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<p>Many families who homeschool are not qualified educators. Of those surveyed in the 2023 <a href="https://education.qld.gov.au/schools-and-educators/other-education/Documents/research-insight-report.pdf">Queensland report</a>, 20% had a teaching qualification. A further 15% had experience working in a school in a role other than teaching.</p>
<p>According to the state’s <a href="https://www.legislation.qld.gov.au/view/html/inforce/current/act-2006-039">Education Act</a>, homeschooling parents have to provide a “<a href="https://education.qld.gov.au/schools-and-educators/other-education/Documents/home-education-fact-sheet.pdf">high-quality education</a>” tailored to the needs of the child and the child must show progress. </p>
<p>Families need to <a href="https://ppr.qed.qld.gov.au/attachment/reporting-for-registration-for-home-education.docx">report annually</a> on the child’s learning and provide a plan for the following year. Parents also <a href="https://education.qld.gov.au/schools-and-educators/other-education/Documents/reporting-information-and-samples-set1.pdf">provide samples</a> of their child’s learning.</p>
<p>Approaches vary across other states. In New South Wales there is a <a href="https://www.educationstandards.nsw.edu.au/wps/wcm/connect/765f88b5-cd94-4acc-a75c-4b88d60d8fb8/form-2-application-for-renewal-or-exemption-from-registration-for-home-schooling.pdf?MOD=AJPERES&CVID=">home visit</a> by a department representative. In Victoria, a family provides a plan and must submit to an audit if they are chosen at random.</p>
<p>Parents do not have to teach to the Australian Curriculum <a href="https://www.australiancurriculum.edu.au/parent-information/">because</a> it sets the goals for what students should learn as they progress through school, not what parents should be doing at home.</p>
<h2>To regulate or not to regulate?</h2>
<p>The <a href="https://www.couriermail.com.au/subscribe/news/1/?sourceCode=CMWEB_WRE170_a_GGL&dest=https%3A%2F%2Fwww.couriermail.com.au%2Fqueensland-education%2Fqld-homeschooling-crackdown-looms-as-parents-fail-to-make-grade%2Fnews-story%2Fdb318404cf763488e7c48fab53b4c4e7&memtype=anonymous&mode=premium&v21=GROUPA-Segment-1-NOSCORE">Courier Mail</a> has reported the Queensland government is considering a “crackdown” on homeschooling rules, noting homeschoolers aren’t required to use the Australian Curriculum or do NAPLAN tests.</p>
<p>However, international research suggests <a href="https://www.igi-global.com/chapter/an-overview-of-the-worldwide-rise-and-expansion-of-home-education-homeschooling/266744">homeschooling outcomes</a> are as good as at mainstream schools in terms of academic success. Homeschooling <a href="https://home-ed.vic.edu.au/the-effectiveness-of-home-education/">can work</a> because it suits some children better and <a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/9781118926895.ch5">parents are motivated</a> to help their children learn.</p>
<p>There is a risk too much regulation will lead to more families flying “under the radar” and not registering. Many who <a href="http://users.comcen.com.au/%7Eguthltd/johnno.homeschool/technical/Registration.htm">do not register now</a> say they do not comply because they are <a href="https://books.google.com.au/books?hl=en&lr=&id=IZSLBQAAQBAJ&oi=fnd&pg=PA112&dq=not+registering+as+a+homeschooler&ots=Zn8Y1L0zXP&sig=2wylgQBAl_l9Fx5vIsU4muD-mi8&redir_esc=y#v=onepage&q=register&f=false">scared of authorities</a> and feel they have been let down by schools in the past. </p>
<p>Australian <a href="https://www.igi-global.com/chapter/reliable-or-risky/266759">research</a> suggests onerous compliance requirements lead to families disengaging with authorities and does not lead to better outcomes for students.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/homeschooled-students-often-get-better-test-results-and-have-more-degrees-than-their-peers-111986">Homeschooled students often get better test results and have more degrees than their peers</a>
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<h2>How to engage homeschooling families</h2>
<p>In <a href="https://www.vic.gov.au/victorian-home-education-advisory-committee">Victoria</a> and <a href="https://theac.tas.gov.au/council-and-staff/">Tasmania</a>, homeschooling families have been included on <a href="https://theac.tas.gov.au/">boards</a> providing advice to government about regulation.</p>
<p>Surveys by the <a href="https://home-ed.vic.edu.au/should-i-register-victoria/">Home Education Network</a> (a home schooling support network) suggest more than 90% of homeschoolers in the state are registered. </p>
<p>If Queensland wants to <a href="https://www.igi-global.com/chapter/reliable-or-risky/266759">increase compliance</a>, it should consider doing more to work with families. For example, by including them in policy making about home education, so families see compliance as a way to support their child’s education, not as a “punishment” for not sending them to a mainstream school. </p>
<p>Governments should also look more closely at <a href="https://intapi.sciendo.com/pdf/10.2478/jped-2021-0004">why families leave schools</a>. We know families are not homeschooling as an “easy option” – they are doing it because it is a last resort.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/traditional-school-doesnt-suit-everyone-australia-needs-more-flexible-options-177608">Traditional school doesn't suit everyone. Australia needs more flexible options</a>
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<img src="https://counter.theconversation.com/content/217802/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rebecca English 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>New data from Queensland shows there has been a 20% increase in homeschooling in the state over the past year.Rebecca English, Senior Lecturer in Education, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.