tag:theconversation.com,2011:/us/topics/people-with-disability-22974/articlesPeople with disability – The Conversation2024-03-26T23:05:53Ztag:theconversation.com,2011:article/2262182024-03-26T23:05:53Z2024-03-26T23:05:53ZAfter seven decades of fighting, disabled people are still vulnerable when it comes to support<p>The <a href="https://www.rnz.co.nz/news/political/512172/we-got-it-wrong-on-disability-announcement-minister-penny-simmonds">recent Facebook announcement by Whaikaha – the Ministry of Disabled People</a> on changes to funding for carers and equipment modification and services has put the <a href="https://www.nzherald.co.nz/nz/disability-funding-pause-causes-confusion-trauma-and-disbelief-colleen-brown/KWF6T6QR6JBARM5I6PG7B7VP7Q/">media spotlight</a>, once again, on respite care for families with disabled children. </p>
<p>Much of the discussions since have centred on the ministry’s <a href="https://newsroom.co.nz/2024/03/19/disability-ministry-days-away-from-spending-all-its-money/">NZ$65 million budget overrun</a> as well as how the media announcement was made via Facebook. But parents leading the charge against funding cuts have also spoken out about the role respite care plays in their everyday lives. </p>
<p>Disability funding in New Zealand includes <a href="https://www.whaikaha.govt.nz/support-and-services/carer-support-and-respite">carer support and individualised funding respite</a>. </p>
<p>Last year, the government paid for the <a href="https://www.beehive.govt.nz/release/government-increases-support-disabled-people">equivalent of 4.9 million support hours</a>. During the same period, 120,000 people accessed disability support services that included equipment and vehicle and housing modifications.</p>
<p>According to Minister for Disability Issues Penny Simmonds, the funding reset will take entitlements back to where they were before COVID. Labour has claimed this move will <a href="https://www.rnz.co.nz/news/political/512100/disability-funding-changes-callous-and-a-broken-promise-labour-says">take the sector back 20 years</a>.</p>
<p>Whether it is four years or 20 years, the government moves highlight just how fragile the position of families is when they rely on government support for their disabled children. But the current news cycle also puts a spotlight on how far the community has come in the last seven decades. </p>
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<h2>Out of sight, out of mind</h2>
<p>In the mid-20th century, it was believed a disabled child pointed to faulty family genetics or even potential immorality. Disabled children and adults were usually hidden away in institutions. Their existence was often kept secret, even from siblings.</p>
<p>But in 1949, a group of New Zealand parents founded the <a href="https://www.ihc.org.nz/">Intellectually Handicapped Children’s Parents’ Association</a>. These parents were fighting for facilities and support to keep their disabled children in their local communities. The main option at the time was institutional care.</p>
<p>The government set up the <a href="https://epress.lib.uts.edu.au/journals/index.php/phrj/article/view/8193/8052">Consultative Committee on Intellectually Handicapped Children</a>. In 1953, the committee recommended expanding what they referred to as the “mental deficiency colonies”. The committee recommended sending children as young as five to these institutions. </p>
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<a href="https://theconversation.com/good-design-lies-at-the-heart-of-normalising-disability-nzs-new-ministry-for-disabled-people-must-make-it-a-priority-171720">Good design lies at the heart of normalising disability – NZ’s new Ministry for Disabled People must make it a priority</a>
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<p>The committee decided permanent respite from the “burden” of caring for their children was best for families. Authorities assured the parents their children would be cared for and be “with their own kind”. </p>
<p>However, the current <a href="https://www.abuseincare.org.nz/">Royal Commission on Abuse in Care</a> puts paid to those claims, with multiple survivors sharing testimonies about neglect and abuse in these institutions.</p>
<p>After two decades, the <a href="https://www.odi.govt.nz/guidance-and-resources/a-brief-history-of-disability-in-aotearoa-new-zealand/">Royal Commission into Hospital and Related Services</a> in the 1970s halted the unabated growth of these institutions. But it wasn’t until 2006 when the last one, <a href="https://thespinoff.co.nz/the-quarter-million/26-07-2023/the-horrors-of-kimberley">Kimberley</a> near Levin, was closed after protest led by disabled people. </p>
<p>The <a href="https://www.legislation.govt.nz/act/public/1975/0122/latest/whole.html">Disabled Persons’ Community Welfare Act (1975)</a> provided some support. However it was still less than the support provided by the recently established Accident Compensation Corporation for those who were those disabled through an accident.</p>
<p>Deinstitutionalisation accompanied the growth of the disability rights movement with demands for autonomy and agency for disabled people. Inclusion rather than segregation became an aspiration and expectation for disabled people and families. </p>
<h2>From NASCs to Enabling Good Lives</h2>
<p>In 1993 disability support was moved from the purview of social welfare to health. The government introduced the Needs Assessment and Service Coordination (<a href="https://www.msd.govt.nz/what-we-can-do/community/carers/guide-for-carers/people/assessing-needs.html">NASCs</a>) system with narrow eligibility for those with intellectual, physical or sensory (vision, hearing) impairments. Autism was not eligible until 2014 and many neurodivergent conditions are still not covered. </p>
<p>“Carer relief” provided a minimal amount of money for out of home care, if suitable carers could be found. </p>
<p>The 2000s was a busy time for the disability community with the first minister and an Office for Disability Issues, a disability strategy and a carers’ strategy. </p>
<p>Disabled New Zealanders had significant input into the <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-Persons-with-disabilities.html">United Nations Convention on the Rights of Persons with Disabilities (2006)</a>. A select committee <a href="https://selectcommittees.parliament.nz/v/2/cdb431fb-cf76-42f8-b0de-4c3858db8994">investigated care and service provision</a>. </p>
<p>But families were still not paid for their carer roles – placing immense pressure on household budgets. After <a href="https://newsroom.co.nz/2018/02/15/a-humiliating-and-impenetrable-system/">multiple legal challenges to the status quo</a>, restricted provision for family funding was introduced. </p>
<p>In 2011, disabled people and their allies developed the person-centred principles of the <a href="https://www.enablinggoodlives.co.nz/about-egl/">Enabling Good Lives</a> framework. </p>
<p>During COVID, families were allowed more support and flexibility in how funding was spent. In July 2022, the community finally got its own ministry, Whaikaha. </p>
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<h2>24/7 care and the need for respite</h2>
<p>Care can include constant planning and managing daily routines including medical interventions and personal cares, feeding, lifting and transferring, remaining alert through wakeful nights, and to children whose behavioural responses can be unpredictable. Care includes trying to avoid situations of sensory overload, constant washing and cleaning, fighting for school access and against other barriers, finding and employing carers, learning new communication technologies and fighting for appropriate equipment. </p>
<p>There may also be also hostility or indifference from those who don’t understand. Families with disabled children are often also supporting other siblings and keeping a sometimes fragile family unit together with precarious finances. This care is often for the lifetime of the disabled person. </p>
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Read more:
<a href="https://theconversation.com/home-support-work-in-nz-is-already-insecure-and-underpaid-automation-may-only-make-it-worse-205017">Home support work in NZ is already insecure and underpaid – automation may only make it worse</a>
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<p><a href="https://www.whaikaha.govt.nz/support-and-services/carer-support-and-respite/respite-explained-options-and-services">Respite</a> funding offers carers a break from their caring routines, but also for disabled people to have a break from families. </p>
<p>Just as in 1949, parents want to care for their much loved children but the support and respite required varies from family to family as each disabled person is unique. Respite must be flexible, funded and timely. But now that flexibility has suddenly “paused”. </p>
<p>The Intellectually Handicapped Children’s Parents’ Association is 75 years old this year. Despite much advocacy, few gains are really entrenched in a way that can’t be taken away. Instead, support is fragile. The assumption endures that only “natural” supports – family and, in particular, mothers – are required for disabled children. </p>
<p>Those earlier battling parents would recognise today’s battling parents. Disabled children and adults are again second class citizens. But what this debacle has shown is that the “disability sector” in all its diversity, is united, strong and vocal.</p><img src="https://counter.theconversation.com/content/226218/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Hilary Stace has received funding in the past from the Health Research Council and from the IHC Foundation. Stace is also an occasional volunteer for the NZ Labour Party</span></em></p>Plans to cut respite care funding has been met with widespread condemnation. But to understand why it is such an issue, it is important to understand the battle for support in the first place.Hilary Stace, Honorary Research Associate, Te Herenga Waka — Victoria University of WellingtonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2248442024-03-13T02:02:14Z2024-03-13T02:02:14ZE for equity? E-scooter and e-bike schemes can help people on low incomes and with disabilities<p>Interest in shared e-bikes and e-scooters, or “micromobility” devices, has skyrocketed in Australia. Every capital city and over 25 local councils <a href="https://micromobilityreport.com.au/infrastructure/bike-scooter-share/scooter-and-bike-share-schemes-are-growing-fast-across-australia/">have trialled</a> shared e-scooter systems through private operators including Lime, Beam and Neuron. </p>
<p><a href="https://www.tandfonline.com/doi/abs/10.1080/14649357.2021.1919746">Public perceptions of these programs</a> are extremely mixed. Some people still think of these small electric personal vehicles as a passing fad. Or, worse, they see them as a source of transport system disruption, public space anarchy and <a href="https://theconversation.com/e-scooters-are-linked-with-injuries-and-hospital-visits-but-we-cant-say-they-are-riskier-than-bikes-yet-222148">traffic injury</a>.</p>
<p>The truth is more nuanced. Shared scooters and bicycles are gradually being integrated into the transport system of our cities. <a href="https://theconversation.com/five-years-on-brisbanes-e-scooters-and-e-bikes-are-winning-over-tourists-and-residents-as-they-open-up-the-city-212464">Brisbane</a> has <a href="https://public.ridereport.com/regions/australia">led the way</a>, followed by Melbourne. </p>
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<p>Yet some are still wondering whether shared micromobility systems are simply a fun form of transport for young, mostly male and high-income tourists, or do they benefit a broader set of users?</p>
<p>Our <a href="https://linkinghub.elsevier.com/retrieve/pii/S295010592400007X">new research</a> across cities in three different countries paints a very different picture. Our findings suggest subsidised micromobility programs can provide significant benefits to vulnerable user groups. </p>
<p>Most shared operators provide discounted rides to low-income customers. In partnership with Lime, we were able to find out how “<a href="https://www.li.me/why/community/lime-access">Lime Access</a>” customers use shared e-scooters and e-bikes and how this compares to non-subsidised customers.</p>
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<a href="https://theconversation.com/five-years-on-brisbanes-e-scooters-and-e-bikes-are-winning-over-tourists-and-residents-as-they-open-up-the-city-212464">Five years on, Brisbane's e-scooters and e-bikes are winning over tourists and residents as they open up the city</a>
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<h2>These schemes can help ease disadvantage</h2>
<p>We surveyed more than 1,000 respondents in Australia, New Zealand and the United States. We found Lime Access customers were five times as likely as non-subsidised riders (35% versus 7%) to use shared scooters and bicycles for daily travel. They were twice as likely to use them for essential trips (such as shopping or commuting) and to connect with public transport (44% versus 23%). </p>
<p>Half of Lime Access customers said one benefit of micromobility was that it allowed them to “get somewhere without a car”. This finding suggests these programs can help support a car-free or car-light lifestyle. This, in turn, makes transport systems more sustainable. </p>
<p>These benefits were highlighted by open-ended survey responses, such as:</p>
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<p>As someone on a low income who does not own a car, it feels very liberating to be able to take a scooter to an area that is not serviced by public transport whenever I like. (Melbourne, Australia)</p>
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Read more:
<a href="https://theconversation.com/thinking-of-swerving-high-fuel-prices-with-an-e-scooter-or-e-bike-5-crucial-questions-answered-179563">Thinking of swerving high fuel prices with an e-scooter or e-bike? 5 crucial questions answered</a>
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<h2>People with disabilities also benefit</h2>
<p>In our study, we did not directly ask about disability. However, a number of Lime Access customers wrote about how the program allows them mobility despite medical conditions or physical disability. </p>
<p>Many of those disabilities are “invisible” – the casual observer is unlikely to notice them. Yet for the riders, the electric motor of the e-scooter or e-bike reduced the fatigue and strain they would experience walking or riding a standard bike.</p>
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<p>I have kidney problems so the scooter saves me from fatigue of long walks. (Christchurch, New Zealand) </p>
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<p>For some respondents, their physical disability prevented them from driving a car. Shared micromobility filled the gap, helping them get to essential destinations.</p>
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<p>I’m ADA, which basically is handicapped, and I cannot walk all over like I used to be able to. Lime provides me independence I wouldn’t have without it! With the low-income program you offer, it literally saves me! I wouldn’t be able to get groceries or run errands or do most anything I do because of Lime. (San Francisco, California)</p>
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<img alt="Two e-bikes parked at the edge of a city street" src="https://images.theconversation.com/files/580635/original/file-20240308-18-slblqs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/580635/original/file-20240308-18-slblqs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=423&fit=crop&dpr=1 600w, https://images.theconversation.com/files/580635/original/file-20240308-18-slblqs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=423&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/580635/original/file-20240308-18-slblqs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=423&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/580635/original/file-20240308-18-slblqs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=532&fit=crop&dpr=1 754w, https://images.theconversation.com/files/580635/original/file-20240308-18-slblqs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=532&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/580635/original/file-20240308-18-slblqs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=532&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 assistance of an electric motor enables people with a wider range of abilities to use e-bikes and e-scooters.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/sydney-australia-on-march-10-2019-1335274913">ArliftAtoz2205/Shutterstock</a></span>
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Read more:
<a href="https://theconversation.com/the-old-road-rules-no-longer-apply-how-e-scooters-challenge-outdated-assumptions-129074">The old road rules no longer apply: how e-scooters challenge outdated assumptions</a>
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<h2>What can governments do to maximise the benefits?</h2>
<p>Our study found shared e-scooters and bikes aren’t just for tourists to go joyriding. With the right frameworks and incentives in place, they can benefit vulnerable groups in society. In this way, they help create more equitable transport systems. </p>
<p>Yet these subsidised programs are relatively unknown and little-advertised. Only 24% of our respondents had ever heard of them.</p>
<p>The challenge remains: how to reach more travellers who could benefit from reduced-fare programs, without undermining the financial viability of operators? Unlike public transport services and <a href="https://www.vic.gov.au/multi-purpose-taxi-program">even taxi services</a>, there is no government support to encourage shared micromobility operators to expand their programs. </p>
<p>In the United States, city governments have been proactive in <a href="https://pdxscholar.library.pdx.edu/trec_reports/238/">embedding equity requirements</a> into service contracts with micromobility providers. For example, <a href="https://www.dcregs.dc.gov/ContentSearch.aspx?searchText=3314.31&DocType=DCMR">Washington DC</a> reduces the fees it charges micromobility operators, with the reduction based on the proportion of travel by low-income customers.</p>
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Read more:
<a href="https://theconversation.com/e-bike-incentives-are-a-costly-way-to-cut-carbon-emissions-but-they-also-promote-health-equity-and-cleaner-air-224312">E-bike incentives are a costly way to cut carbon emissions, but they also promote health, equity and cleaner air</a>
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<p>In Australia, local and state governments should be moving beyond how to regulate these programs to also focus on how to better integrate them into our transport system. With the right incentives in place, we can maximise the benefits of micromobility for people who are most in need of affordable and accessible transport solutions.</p><img src="https://counter.theconversation.com/content/224844/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alexa Delbosc conducted this project in collaboration with Lime. Calvin Thigpen, an author on the research paper, is an employee of Lime. Lime provided access to distribute the survey to Lime customers and did not provide any financial support for the study. Dr Thigpen only became involved in the project during late-stage paper writing and qualitative data analysis.</span></em></p>Low-income customers who qualify for subsidised rates are five times more likely to use shared e-scooters and e-bikes for daily travel. People with disabilities also value them.Alexa Delbosc, Associate Professor in Transport, Monash UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2113972023-08-21T22:12:14Z2023-08-21T22:12:14ZReimagining time will help employers better support workers with disabilities<figure><img src="https://images.theconversation.com/files/543102/original/file-20230816-27-e4h4e9.jpg?ixlib=rb-1.1.0&rect=19%2C39%2C6507%2C4305&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Individuals with disabilities are under-represented in the Canadian labour market compared to their able-bodied counterparts.</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/reimagining-time-will-help-employers-better-support-workers-with-disabilities" width="100%" height="400"></iframe>
<p>Despite the fact that people with disabilities are entitled to equality under the <a href="https://laws-lois.justice.gc.ca/eng/const/page-12.html">Canadian Charter of Rights and Freedoms</a> and the provincial <a href="https://www.ontario.ca/laws/statute/90h19">Human Rights Codes</a>, they continue to face systemic barriers in accessing employment, education, transportation and housing. </p>
<p>Individuals with disabilities are <a href="https://www.canada.ca/content/dam/esdc-edsc/documents/programs/disability-inclusion-action-plan-2/action-plan-2022/ESDC_PDF_DIAP_EN_20221005.pdf">under-represented</a> in the Canadian labour market. <a href="https://www.scotiabank.com/ca/en/about/economics/economics-publications/post.other-publications.insights-views.disabilities-and-labour-markets--november-30--2022-.html">Only 60 per cent of people with disabilities are employed</a> in Canada, compared to 80 per cent of those without disabilities. </p>
<p>Studies also indicate that Canadians with more severe disabilities are more likely to work part-time than their able-bodied peers. Men with disabilities, for example, are three times more likely to work <a href="https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018002-eng.htm#n6-refa">part-time</a> than their able-bodied counterparts.</p>
<p>Working-age individuals with disabilities are also twice as likely to live in poverty compared to those without disabilities. </p>
<p>Recent initiatives like the <a href="https://www.parl.ca/DocumentViewer/en/44-1/bill/C-22/royal-assent">Canada Disability Benefit Act</a> and legislation like the <a href="https://laws-lois.justice.gc.ca/eng/acts/a-0.6/">Accessible Canada Act</a> are important steps towards equality for people with disabilities, but more needs to be done to ensure they can flourish in the workplace.</p>
<h2>‘Crip time’</h2>
<p>One way to dramatically improve the lives of people with disabilities is by understanding time in a way that considers how people with disabilities experience barriers — something known as “<a href="https://www.firstpost.com/living/the-value-of-crip-time-discarding-notions-of-productivity-and-guilt-to-listen-to-the-rhythms-of-our-bodies-8440551.html">crip time</a>.”</p>
<p>It acknowledges the lived reality of people with disabilities and how they experience time in domains as diverse as transportation, employment and even recreation.</p>
<p>The concept of crip time, originally developed by scholars of disability studies such as <a href="https://iupress.org/9780253009340/feminist-queer-crip/">Alison Kafer</a> and <a href="https://dsq-sds.org/index.php/dsq/article/view/5824/4684">Ellen Samuels</a>, has the potential to help Canadians reimagine how we think about disability.</p>
<p>Consider Joanna, a fictional example. She is a quadriplegic who uses specialized door-to-door paratransit buses to get around and pre-booked attendant services to assist her with daily activities. </p>
<p>Someone like Joanna is likely to face frequent delays when commuting to work because <a href="https://capitalcurrent.ca/dissatisfied-para-transpo-riders-demand-changes-to-the-system">paratransit often involves long wait times</a>. In many cases, <a href="https://thelocal.to/wheel-trans-accessibility-cuts-ttc">no paratransit bookings are available</a>, forcing people with disabilities to use inaccessible transit systems. </p>
<p>Alternatives to paratransit, such as wheelchair-accessible taxis, are often unavailable or unaffordable for people with disabilities. The <a href="https://www.cbc.ca/news/canada/ottawa/ottawa-accessible-taxi-dispatch-1.6878168">severe shortage of wheelchair-accessible taxis</a> has only worsened over the past several years. </p>
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<img alt="A person in a wheelchair waiting to board a city bus" src="https://images.theconversation.com/files/543093/original/file-20230816-28-9n8ron.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/543093/original/file-20230816-28-9n8ron.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=432&fit=crop&dpr=1 600w, https://images.theconversation.com/files/543093/original/file-20230816-28-9n8ron.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=432&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/543093/original/file-20230816-28-9n8ron.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=432&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/543093/original/file-20230816-28-9n8ron.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=543&fit=crop&dpr=1 754w, https://images.theconversation.com/files/543093/original/file-20230816-28-9n8ron.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=543&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/543093/original/file-20230816-28-9n8ron.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=543&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">When paratransit bookings are unavailable, people with disabilities must resort to commuting with inaccessible transit systems, which can be difficult for them to use.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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<p>Joanna is also likely to face barriers when attendants are tardy or fail to show up at all. Even recreation programs that are accessible to wheelchair users may have waiting lists or require significant time to access.</p>
<p>Together, these barriers have the potential to significantly curtail Joanna’s ability to do her job. By understanding how these barriers affect people with disabilities — as well as other areas of daily living — crip time can guide policymakers and advocates towards more effective solutions.</p>
<h2>Remote work</h2>
<p>In a dramatic departure from pre-pandemic norms, a <a href="https://theconversation.com/the-shift-to-working-from-home-will-be-difficult-to-reverse-208728">growing number of workplaces have embraced working from home</a> in the wake of COVID-19. <a href="https://www.forbes.com/sites/benjaminlaker/2021/11/03/workers-believe-there-is-a-negative-stigma-is-associated-with-working-from-home/">No longer stigmatized</a>, remote work now offers a tool <a href="https://doi.org/10.1007%2Fs10926-020-09936-5">to level the playing field</a> for people with disabilities.</p>
<p>In an ongoing study of working adults with disabilities, we found that many participants flourished when they were given the opportunity to work at home.</p>
<p>One participant shared: </p>
<blockquote>
<p>“I have never been as productive and as happy, both personally and professionally, as when my work was 100 per cent remote.”</p>
</blockquote>
<p>Another participant disclosed remote work as being beneficial to their personal health: </p>
<blockquote>
<p>“I had more time to focus on my own self, my appointments and [my] mental health. So I feel remote work has been amazing for me.”</p>
</blockquote>
<p>It’s clear that remote work has the potential to help people with disabilities excel professionally. In light of this, companies should be proactive in offering such workplace accommodations to employees.</p>
<h2>More inclusive workplaces</h2>
<p>We need to reconsider how workplaces view productivity. Creating flexible workplaces that allow people to work part-time and/or from home is a more inclusive approach. </p>
<p>By creating more inclusive workplaces, companies can harness the talent of individuals who might otherwise be excluded from the workplace. Companies <a href="https://theconversation.com/employers-miss-out-on-talent-by-overlooking-workers-living-with-disabilities-119626">miss out on talent opportunities</a> when they don’t hire people with disabilities.</p>
<p>Flexible workplaces could also benefit people without disabilities, such as single parents and students who are only able to work part-time. With appropriate support from governments and employers to ensure part-time workers receive adequate benefits, the potential of crip time as a policy tool is profound.</p>
<p>Although our study is still ongoing, we’re hopeful our preliminary findings will change how we think about the role time plays in the lives of people with disabilities. </p>
<p>By understanding and addressing the ways people with disabilities experience time differently than able-bodied people in their everyday lives, we can build more inclusive — and productive — workplaces for all of us.</p><img src="https://counter.theconversation.com/content/211397/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ravi Malhotra receives funding from SSHRC.</span></em></p><p class="fine-print"><em><span>Julia Dobrowolski 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>One way to dramatically improve the lives of people with disabilities is by understanding time in a way that considers how people with disabilities experience barriers — something known as “crip time.”Ravi Malhotra, Professor of Law, L’Université d’Ottawa/University of OttawaJulia Dobrowolski, Research Assistant, Telfer School of Management, L’Université d’Ottawa/University of OttawaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1957092022-12-07T13:43:51Z2022-12-07T13:43:51ZBiden signs marriage equality bill into law – but the Respect for Marriage Act has a few key limitations<figure><img src="https://images.theconversation.com/files/499327/original/file-20221206-20-tgqn8n.jpg?ixlib=rb-1.1.0&rect=312%2C57%2C3924%2C2765&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The Respect for Marriage Act will reverse the 1996 law that defines marriage as one between heterosexual couples.</span> <span class="attribution"><a class="source" href="https://media.gettyimages.com/id/172126937/photo/us-california-same-sex-marriage.jpg?s=1024x1024&w=gi&k=20&c=VTSXlnnOvDEW7u24S8JrdFmzJSM6IzW6Gbi_-fRLbL8=">Robyn Beck/AFP via Getty Images</a></span></figcaption></figure><p>President Joe Biden <a href="https://www.npr.org/2022/12/13/1142331501/biden-to-sign-respect-for-marriage-act-reflecting-his-and-the-countrys-evolution">signed the</a> <a href="https://www.congress.gov/bill/117th-congress/house-bill/8404/text">Respect for Marriage Act</a> on Dec. 13, 2022, protecting the federal right to same-gender marriage, which is often referred to as same-sex marriage.</p>
<p>The U.S. House of Representatives first <a href="https://www.nytimes.com/2022/12/08/us/politics/same-sex-marriage-congress.html">approved the</a> the <a href="https://www.congress.gov/bill/117th-congress/house-bill/8404/text">Respect for Marriage Act</a> – a law that codifies both interracial and same-gender marriage – on Dec. 8, 2022. This followed the <a href="https://www.cbsnews.com/news/respect-for-marriage-act-senate-vote-marriage-equality-bill/">Senate passing</a> the Respect for Marriage Act on Nov. 29, 2022. </p>
<p>Many leaders of major LGBTQ+ rights organizations have praised the Respect for Marriage Act. For example, Kelley Robinson, president of the LGBTQ+ advocacy group the Human Rights Campaign, <a href="https://www.hrc.org/press-releases/a-landmark-step-toward-equality-human-rights-campaign-celebrates-senate-passage-of-bipartisan-respect-for-marriage-act">said in November 2022</a> that the act will allow “the 568,000 same-sex married couples in this country … (to) breathe a sigh of relief that their marriages will be protected from future attacks.”</p>
<p>However, the Respect for Marriage Act also has various limitations that have not received a lot of public attention. As a <a href="https://wgss.osu.edu/people/debussy.1">public policy scholar</a> with a focus on LGBTQ+ issues, I’ve noticed at least three major shortcomings related to this imminent law. And as such, I don’t necessarily expect it to lead to legal protection and equality for all. </p>
<p>One key issue is that anti-LGBTQ+ laws in conservative states could undercut the Respect for Marriage Act. The act also provides an exemption for religious nonprofits. And finally, it does not fix a long-lasting problem that penalizes the marriages of people with disabilities – regardless of their sexuality. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/499075/original/file-20221205-12-yb6d53.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A white man in a suit is seen hugging a lady with dark hair. Next to him a blond woman with red glasses moves to hug another woman with blonde hair, as seen from the back." src="https://images.theconversation.com/files/499075/original/file-20221205-12-yb6d53.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/499075/original/file-20221205-12-yb6d53.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/499075/original/file-20221205-12-yb6d53.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/499075/original/file-20221205-12-yb6d53.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/499075/original/file-20221205-12-yb6d53.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/499075/original/file-20221205-12-yb6d53.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/499075/original/file-20221205-12-yb6d53.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">Several lawmakers celebrate after the Senate voted to approve the Respect for Marriage Act on Nov. 29, 2022.</span>
<span class="attribution"><a class="source" href="https://media.gettyimages.com/id/1245218619/photo/senate-passes-respect-for-marriage-act.jpg?s=1024x1024&w=gi&k=20&c=vy_UtS3LVbG_yTV3KN4UvXIA3dOxGxuwXwOLzBv3Fpc=">Kent Nishimura/Los Angeles Times via Getty Images</a></span>
</figcaption>
</figure>
<h2>First, a bit of background</h2>
<p>The Respect for Marriage Act will repeal the <a href="https://www.law.cornell.edu/wex/defense_of_marriage_act_(doma)">Defense of Marriage Act</a>, which President Bill Clinton signed into law in 1996. The Defense of Marriage Act set the federal definition of marriage as “one man, one woman” and allowed states to refuse to honor same-gender marriage licenses issued by other states.</p>
<p>In 2013, the Supreme Court ruled that part of this law was unconstitutional in the case, <a href="https://www.oyez.org/cases/2012/12-307">U.S. v. Windsor</a>. In 2015, the court also issued another ruling, <a href="https://www.oyez.org/cases/2014/14-556">Obergefell v. Hodges</a>, which required all states to license and recognize same-gender marriages.</p>
<p>But <a href="https://www.whitehouse.gov/briefing-room/statements-releases/2022/11/29/statement-from-president-joe-biden-on-bipartisan-senate-passage-of-the-respect-for-marriage-act/">concern about</a> the court’s precedent on same-gender marriage was ignited after the Supreme Court made its June 2022 ruling in <a href="https://www.whitehouse.gov/briefing-room/statements-releases/2022/11/29/statement-from-president-joe-biden-on-bipartisan-senate-passage-of-the-respect-for-marriage-act/">Dobbs v. Jackson Women’s Health Organization,</a> which overturned the federal right to an abortion. </p>
<p>Supreme Court Justice Clarence Thomas issued a <a href="https://www.supremecourt.gov/opinions/21pdf/19-1392_6j37.pdf">concurrent opinion</a> alongside the Dobbs v. Jackson ruling. In it, <a href="https://www.axios.com/2022/06/24/clarence-thomas-same-sex-marriage-contraception">he wrote that</a> since abortion rights are not protected under the 14th Amendment – which provides people with <a href="https://www.senate.gov/about/origins-foundations/senate-and-constitution/14th-amendment.htm">“equal protection under the laws”</a> – the court should also review several past cases, such as ones that affirmed the rights to contraception and same-gender marriages. </p>
<p>Because of this, Democratic and Republican legislators fast-tracked the Respect for Marriage Act through Congress in the fall of 2022.</p>
<h2>It doesn’t stop states from passing discriminatory laws</h2>
<p>While the Defense of Marriage Act is not currently enforced, it remains on the books. The Respect for Marriage Act fully repeals the Defense of Marriage Act – but it <a href="https://www.axios.com/2022/11/30/respect-for-marriage-act-does-and-doesnt-do">won’t stop states</a> from passing their own new discriminatory marriage restrictions or enforcing preexisting measures.</p>
<p>Among other things, the Respect for Marriage Act <a href="https://constitution.congress.gov/browse/essay/artIV-S1-1/ALDE_00013015/">requires all </a> states to <a href="https://www.hrc.org/press-releases/respect-for-marriage-act-what-it-does-how-it-interacts-with-the-obergefell-ruling-and-why-theyre-both-essential-to-protecting-marriage-equality">recognize marriage licenses</a> from other states. </p>
<p>Some legal experts have noted that the conservative-leaning Supreme Court could overturn <a href="https://www.them.us/story/obergefell-legal-experts-lgbtq-marriage-protection">its previous rulings on marriage equality.</a> In that case, states could try to deny marriage licenses to interracial and same-gender couples by passing new state laws. </p>
<p>If that happens, these states would have to recognize same-gender marriage licenses from other states where it remains legal. But states could still pass and enforce a racist or anti-LGBTQ+ measure that restricts access to marriage licenses there.</p>
<p>In that instance, the only way some couples could have their marriage recognized at home would be by traveling to another LGBTQ+ friendly state to get a marriage license – similar to how some people now <a href="https://www.npr.org/2022/07/21/1112609958/even-before-the-dobbs-ruling-more-americans-were-traveling-for-abortions">travel out of state</a> to get an abortion. This scenario would almost immediately result in a flurry of lawsuits at the state level.</p>
<h2>It gives exemptions to religious nonprofits</h2>
<p>When the <a href="https://www.cbsnews.com/news/respect-for-marriage-act-senate-vote-marriage-equality-bill/">Senate passed</a> the Respect for Marriage Act, the bill had a <a href="https://www.usatoday.com/story/news/politics/2022/11/28/gay-marriage-same-sex-religious-liberty-senate/10790692002/">new religious liberty amendment</a> added to it. While this concession was a <a href="https://www.newsweek.com/these-12-republican-senators-voted-advance-respect-marriage-act-1762912">draw for some Republican legislators</a>, it creates some notable exemptions. </p>
<p>This language codifies the rights of religious nonprofits – including faith-based institutions, mission organizations, religious educational institutions and others – to not celebrate or, in some instances, recognize a marriage that conflicts with their faith. </p>
<p>In doing so, such organizations are <a href="https://www.indystar.com/story/opinion/2022/11/30/todd-young-same-sex-marriage-law-indiana-lgbtq-rights-2022/69682795007/">allowed to deny</a> “services, accommodations, advantages, facilities, goods, or privileges for the solemnization or celebration of a marriage.”</p>
<p>In short, religious institutions could still refuse to host or officiate wedding ceremonies or to provide services, on the basis of religious liberty. </p>
<p>This exemption follows the Supreme Court’s 2021 ruling in <a href="https://www.oyez.org/cases/2020/19-123">Fulton v. City of Philadelphia</a>. In that case, the court <a href="https://theconversation.com/supreme-court-unanimously-upholds-religious-liberty-over-lgbtq-rights-and-nods-to-a-bigger-win-for-conservatives-ahead-161398">unanimously decided</a> that a Christian adoption agency in the city could refuse to work with a same-gender couple.</p>
<p>Currently, the impact that this clause of the Respect for Marriage Act could have on LGBTQ+ rights remains to be seen. Even so, this builds upon a longer history of religious liberty arguments that have been used to deny rights to <a href="https://www.aclu.org/news/lgbtq-rights/masterpiece-bakery-wins-battle-loses-war">same-gender couples</a>, <a href="https://www.nytimes.com/2019/05/02/upshot/conscience-rule-trump-religious-exemption-health-care.html">transgender people</a>, <a href="https://www.nytimes.com/2014/07/01/us/hobby-lobby-case-supreme-court-contraception.html">women</a> and others.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/499299/original/file-20221206-18-ven0c5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Three women stand next to each other in a city street, holding signs that say 'Don't dis my ability,' and 'the only disability in life is a bad attitude'" src="https://images.theconversation.com/files/499299/original/file-20221206-18-ven0c5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/499299/original/file-20221206-18-ven0c5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/499299/original/file-20221206-18-ven0c5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/499299/original/file-20221206-18-ven0c5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/499299/original/file-20221206-18-ven0c5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/499299/original/file-20221206-18-ven0c5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/499299/original/file-20221206-18-ven0c5.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">People celebrate the fifth annual Disability Pride March in New York in 2019.</span>
<span class="attribution"><a class="source" href="https://media.gettyimages.com/id/1229016168/photo/new-york-celebrated-the-fifth-annual-disability-pride-with-a.jpg?s=1024x1024&w=gi&k=20&c=M6hH6x0cDWSUvA2kbd1Nl-OkR6ijIBTzmVXUycpmQm4=">Erik McGregor/LightRocket via Getty Images</a></span>
</figcaption>
</figure>
<h2>It doesn’t ensure marriage equality for people with disabilities</h2>
<p>Finally, the Respect for Marriage Act does not explicitly protect people with disabilities, who still <a href="https://www.npr.org/2022/02/13/1080464176/disabled-americans-cant-marry-able-bodied-partners-without-losing-federal-benefi">do not have access</a> to marriage equality. </p>
<p>There are <a href="https://www.specialneedsalliance.org/the-voice/what-happens-when-persons-living-with-disabilities-marry-2/">several legal obstacles</a> that people with disabilities – whether identifying as LGBTQ+ or not – face when it comes to marriage. There is a so-called <a href="https://dredf.org/2022/03/28/disabled-adult-child-dac-marriage-penalty/">“marriage penalty,”</a> which can cause people with disabilities to lose benefits after marrying a nondisabled person.</p>
<p>While the Americans with Disabilities Act provides access to public accommodations, it <a href="https://equitashealth.com/blog/16863/">does not prohibit</a> this marriage penalty. This means that people with disabilities generally lose their Social Security, Medicare and Medicaid benefits if they marry a nondisabled person.</p>
<p>While the Respect for Marriage Act repeals the Defense of Marriage Act, it will not repeal these marriage penalties from federal law. </p>
<p>Advocates are calling for proposed legislation, such as the <a href="https://www.congress.gov/bill/117th-congress/house-bill/6405/text">Marriage Equality for Disabled Adults Act.</a> This <a href="https://www.forbes.com/sites/andrewpulrang/2020/08/31/a-simple-fix-for-one-of-disabled-peoples-most-persistent-pointless-injustices/?sh=76b5b45e6b71">would remove</a> this marriage penalty from federal law. Although disability rights activists continue to push for legislation to <a href="https://www.forbes.com/sites/andrewpulrang/2022/03/31/whats-next-in-marriage-equality-for-people-with-disabilities/?sh=30e7b0d56eb7">undo this penalty</a>, the bill has been sitting with the House of Representatives subcommittee on health <a href="https://www.congress.gov/bill/117th-congress/house-bill/6405/committees?q=%7B%22search%22%3A%5B%22Marriage+Equality+for+Disabled+Adults+Act%22%2C%22Marriage%22%2C%22Equality%22%2C%22for%22%2C%22Disabled%22%2C%22Adults%22%2C%22Act%22%5D%7D&r=1&s=1">since January 2022</a>.</p>
<p>The Respect for Marriage Act is an important win for interracial and same-gender couples, as it will codify the right to marriage into federal law. However, it is important to remember what this bill does not do. </p>
<p>The limitations of the Respect for Marriage Act – including no restrictions on discriminatory state laws, the presence of religious exemptions and the unacknowledged needs of people with disabilities – remain important to consider.</p><img src="https://counter.theconversation.com/content/195709/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dorian Rhea Debussy does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The Respect for Marriage Act provides exemptions for religious groups, excludes people with disabilities – and could still lead to state-level discrimination laws.Dorian Rhea Debussy, Lecturer of Women's, Gender, and Sexuality Studies, The Ohio State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1918142022-10-11T17:02:40Z2022-10-11T17:02:40ZFiona: People with disabilities need more support in extreme storms<figure><img src="https://images.theconversation.com/files/488158/original/file-20221004-20-t19cfq.JPG?ixlib=rb-1.1.0&rect=0%2C0%2C8378%2C5317&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A walker lies among the debris following hurricane Fiona in Burnt Island, NL., on Sept. 28.</span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Frank Gunn</span></span></figcaption></figure><p>The ability to prepare for and recover from an emergency is a privilege many take for granted. Two days before post-tropical cyclone Fiona reached Atlantic Canada, <a href="https://www.getprepared.gc.ca/cnt/rsrcs/pblctns/yprprdnssgd/index-en.aspx">public officials were clear</a>: <a href="https://novascotia.ca/emergency-education/">people should prepare enough supplies</a> for 72 hours, including food, water and medications for each member of the household as well as for their animals.</p>
<p>People <a href="https://novascotia.ca/alerts/docs/are-you-ready-emergency-guide-for-persons-with-disabilities.pdf">were also advised to have personal support networks</a> that could assist them during an emergency. <a href="https://theconversation.com/fiona-was-one-of-canadas-worst-natural-disasters-but-evacuations-prevented-greater-losses-in-atlantic-canada-191319">Some people were told to prepare to evacuate</a>.</p>
<p>Despite these directions, post-mortems for the <a href="https://open.alberta.ca/publications/review-and-analysis-of-the-government-of-albertas-response-to-and-recovery-from-2013-floods">2013 Alberta floods</a> as well as <a href="https://ncd.gov/publications/2006/Aug072006">hurricanes Katrina, Rita</a> <a href="https://www.nrdc.org/experts/albert-huang/hurricane-sandys-disproportionate-impact-nycs-most-vulnerable-communities">and Sandy</a> all noted that we don’t do enough to address the needs of vulnerable populations during disasters. Progress has been made over recent years, but the experiences of people with disabilities during Fiona and <a href="https://cdn.dal.ca/content/dam/dalhousie/pdf/dept/maceachen-institute/Roundtable%20on%20Risk%20Communication%20and%20people%20with%20disabilities.pdf">our ongoing research</a> show there is more to be done.</p>
<h2>The impact on people with disabilities</h2>
<p><a href="https://www.cbc.ca/listen/live-radio/1-37-mainstreet-ns/clip/15939101-n.s.-woman-says-vulnerable-persons-registry-needed-severe">Anne Camozzi</a> uses a wheelchair and provided a harrowing account of being on her own during Fiona, with no power, telecommunications or accessible transportation during the event. <a href="https://www.cbc.ca/news/canada/nova-scotia/vulnerable-persons-registry-hurricane-fiona-nova-scotia-1.6600414">She said she was unaware of comfort centres and emergency preparedness resources set up in advance of the storm</a>. </p>
<p>Other people with disabilities <a href="https://www.cbc.ca/news/canada/nova-scotia/vulnerable-persons-registry-hurricane-fiona-nova-scotia-1.6600414">experienced challenges using medical equipment and raised concerns about inaccessible stairwells in apartment buildings</a>. <a href="https://globalnews.ca/news/9157121/missing-nova-scotia-man-swept-sea-storm-fiona/">Larry Smith, who lives alone with dementia, disappeared during the storm and is sadly presumed dead</a>.</p>
<p><a href="https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018002-eng.htm">At least one in five</a> Canadians 15 and older have at least one disability, with nearly 40 per cent reporting two or more disabilities. The Atlantic provinces <a href="https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=1310037401">report the highest proportion of people with disabilities living in Canada.</a> The aging population in the region suggests the number of people with disabilities in Atlantic Canada is growing.</p>
<p>Emergency preparation raises important practical questions. You need the time and wherewithal to acquire necessary supplies, and the space to store them adequately. This can be challenging for people with disabilities who <a href="https://www150.statcan.gc.ca/n1/daily-quotidien/181128/dq181128a-eng.htm">experience high rates of poverty and unemployment</a>. Social networks may not not be readily available either; <a href="https://www.mdpi.com/2075-4698/8/2/36/htm">people with disabilities are often excluded from many parts of society</a>.</p>
<figure class="align-center ">
<img alt="A dark-haired man looks at a destroyed house." src="https://images.theconversation.com/files/488160/original/file-20221004-26-j3iisp.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/488160/original/file-20221004-26-j3iisp.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/488160/original/file-20221004-26-j3iisp.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/488160/original/file-20221004-26-j3iisp.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/488160/original/file-20221004-26-j3iisp.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/488160/original/file-20221004-26-j3iisp.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/488160/original/file-20221004-26-j3iisp.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">Prime Minister Justin Trudeau tours the damage caused by Fiona in Port aux Basques, N.L. on Sept. 28.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Frank Gunn</span></span>
</figcaption>
</figure>
<h2>A legal obligation</h2>
<p>Supporting people with disabilities in an emergency is not just about doing the right thing, it’s also the law, fundamental to human rights and a feature of several international agreements to which Canada is signatory. </p>
<p>Article 11 of the <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html">United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)</a>, the <a href="https://www.undrr.org/implementing-sendai-framework/what-sendai-framework">UN Sendai Framework</a> and the <a href="https://laws-lois.justice.gc.ca/eng/acts/A-0.6/">Accessible Canada Act</a> all underscore the right for people with disabilities to access services and supports in an emergency.</p>
<p>Accessibility legislation has been implemented in many provinces, including <a href="https://nslegislature.ca/sites/default/files/legc/statutes/accessibility.pdf">Nova Scotia</a>, <a href="https://www.bclaws.gov.bc.ca/civix/document/id/complete/statreg/21019">British Columbia</a>, <a href="https://accessibilitymb.ca/ama.html">Manitoba</a> and <a href="https://www.ontario.ca/laws/statute/05a11">Ontario</a>.</p>
<p>Recent policies encourage the elderly and people with disabilities to stay at home longer. <a href="https://housingandhomelessness.ca/wp-content/uploads/2015/10/Halifax-Housing-Needs-Assessment-Final-Report-2015.pdf">Many seniors are moving into apartment buildings in urban areas</a>. This makes it challenging to identify where people with disabilities are located during an event.</p>
<p>There have been calls for a registry for persons with disabilities to strengthen emergency response. Some municipalities, <a href="https://www.truro.ca/vulnerable-person-registry.html">such as Truro</a>, N.S. <a href="https://www.publicsafety.gc.ca/cnt/cntrng-crm/plcng/cnmcs-plcng/ndx/snpss-en.aspx?n=492">and Ontario’s Peel Region</a>, have registries while others keep lists of people with disabilities in institutions like group homes. </p>
<p>Utilities like <a href="https://www.nspower.ca/outages/critical-customer-communication-program">Nova Scotia Power have resources to track who needs power</a> for home oxygen and dialysis machines. <a href="https://www.medicalert.ca/Programs/MedicAlert-Connect-Protect">MedicAlertConnect Protect</a> is used by police departments primarily in Saskatchewan, Ontario, Prince Edward Island and Newfoundland and Labrador to access subscribers’ information in case of emergency.</p>
<figure class="align-center ">
<img alt="Power workers, one in a cherry-picker, repair downed power lines along a road." src="https://images.theconversation.com/files/488162/original/file-20221004-18-kwn07p.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/488162/original/file-20221004-18-kwn07p.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/488162/original/file-20221004-18-kwn07p.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/488162/original/file-20221004-18-kwn07p.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/488162/original/file-20221004-18-kwn07p.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/488162/original/file-20221004-18-kwn07p.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/488162/original/file-20221004-18-kwn07p.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">Nova Scotia Power crews work to fix power lines near Lower Barneys River in Pictou County, N.S., on Sept. 28 following significant damage brought by Fiona.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Darren Calabrese</span></span>
</figcaption>
</figure>
<h2>Limitations</h2>
<p>This approach has important limitations. Some jurisdictions have struggled to use registries effectively. There are also privacy considerations. People do not necessarily want to disclose information about their disability.</p>
<p>Keeping the information up-to-date is also a significant undertaking; an out-of-date list creates new dangers. Where the data is stored and who has access are also key questions. </p>
<p>Finally, the liability and service standard considerations for an agency that collects such information are unclear. Without power and telecommunications, any assistance would be significantly constrained.</p>
<p>One solution is to better integrate the views and experiences of people with disabilities into emergency planning prior to such events. <a href="https://theconversation.com/fiona-was-one-of-canadas-worst-natural-disasters-but-evacuations-prevented-greater-losses-in-atlantic-canada-191319">People with disabilities have unique perspectives and needs in emergencies.</a> </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/fiona-was-one-of-canadas-worst-natural-disasters-but-evacuations-prevented-greater-losses-in-atlantic-canada-191319">Fiona was one of Canada's worst natural disasters, but evacuations prevented greater losses in Atlantic Canada</a>
</strong>
</em>
</p>
<hr>
<p>Accessible transportation and access to specific equipment and supplies are particularly important. They also need to know who to reach out to for qualified support and have confidence that such support will be available.</p>
<p>There are <a href="https://cdn.dal.ca/content/dam/dalhousie/pdf/dept/maceachen-institute/Final%20Report%20-%20PwDs%20in%20Emergency%20Management.pdf">existing policies and programs focused on improving emergency responses for people with disabilities in Canada</a>. Manitoba, for example, established the <a href="https://ilrc.mb.ca/demnet/">Disability Emergency Management Network (DEM-Net)</a>, a coalition of the Manitoba Disability Issues Office, community disability and seniors’ organizations, and emergency responders. </p>
<p>The network tries to integrate lived experience of those with disabilities into emergency responses. Other regions in Canada should adopt similar institutional practices.</p><img src="https://counter.theconversation.com/content/191814/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kevin Quigley receives funding from Accessibility Standards Canada and SSHRC. </span></em></p><p class="fine-print"><em><span>Kaitlynne Lowe receives funding from Accessibility Standards Canada and SSHRC. </span></em></p>Supporting people with disabilities in an emergency is not just about doing the right thing, it’s also the law, fundamental to human rights and part of several international agreements.Kevin Quigley, Scholarly Director of the MacEachen Institute for Public Policy and Governance, Dalhousie UniversityKaitlynne Lowe, Research Associate, Public Policy, Dalhousie UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1815602022-06-10T12:30:11Z2022-06-10T12:30:11ZDecades after special education law and key ruling, updates still languish<figure><img src="https://images.theconversation.com/files/468082/original/file-20220609-18-6twc2p.jpg?ixlib=rb-1.1.0&rect=31%2C0%2C5207%2C3257&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Learning support teachers such as Sabrina Werley are common, but schools' services can vary widely.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/sabrina-werley-works-with-her-4th-grade-students-in-a-math-news-photo/1312861050">Ben Hasty/MediaNews Group/Reading Eagle via Getty Images</a></span></figcaption></figure><p>It has been 40 years since the U.S. Supreme Court first took up a case about special education in public schools, Board of Education of the Hendrick Hudson Central School District v. Rowley. In that case, the court ruled that a deaf student didn’t qualify for a sign-language interpreter because the student was doing well enough, even though an interpreter could have helped the student learn more and do better.</p>
<p>In the decades since Rowley, court orders and a few adjustments to federal laws have clarified the rights of students to get accommodations for various conditions and disabilities affecting their education. But the law governing these rights, now known as the <a href="http://idea.ed.gov/">Individuals with Disabilities Education Act</a>, has not been updated significantly since its original passage in 1975, and has never gone so long without a full congressional review.</p>
<h2>A move toward equality</h2>
<p>In many ways, Rowley owes its existence to America’s first landmark ruling about equal educational opportunity: <a href="https://caselaw.findlaw.com/us-supreme-court/347/483.html">Brown v. Board of Education</a> in 1954, which banned racial segregation in public K-12 schools. Efforts at desegregation continue, with the Civil Rights Division of the Department of Justice reporting it is handling “<a href="https://www.justice.gov/doj/page/file/1246366">approximately 150 desegregation cases</a>.”</p>
<p>During the initial push toward racial integration in the nation’s public schools, there was also a movement to integrate other disadvantaged students into public school classrooms: those with disabilities. The first major federal effort came in 1975 with the enactment of the <a href="https://www.congress.gov/bill/94th-congress/house-bill/7217">Education for All Handicapped Children Act</a>, renamed the <a href="https://sites.ed.gov/idea/">Individuals with Disabilities Education Act</a> in 1990. </p>
<p>The IDEA law has always applied to children <a href="https://sites.ed.gov/idea/statute-chapter-33/subchapter-ii/1412/a/1">between the ages of 3 and 21</a> who have intellectual disabilities, hearing impairments, speech or language impairments, or <a href="https://sites.ed.gov/idea/statute-chapter-33/subchapter-i/1401/3">other specifically identifiable disabilities</a> listed in the law. This is <a href="https://nces.ed.gov/programs/coe/indicator/cgg">about 15%</a> of the nation’s school-age population.</p>
<p>These children have the right to a “<a href="https://www.law.cornell.edu/uscode/text/20/1401">free appropriate public education</a>” in the “<a href="https://sites.ed.gov/idea/statute-chapter-33/subchapter-ii/1412/a/5">least restrictive environment</a>” possible in which their needs can be met. This means that unless their conditions dictate otherwise, they must be placed in classrooms with peers of the same age who are not disabled.</p>
<p>Students must also receive, at no cost to their parents, specially designed instruction with programming detailed in their <a href="https://sites.ed.gov/idea/regs/b/d/300.320">Individualized Education Programs</a> and related support services. This might include <a href="https://sites.ed.gov/idea/regs/b/a/300.34">transportation services and even sign-language interpreters</a>, which were at issue in the Rowley case.</p>
<p>Controversy over the meaning of the law began in earnest in 1982 with the first Supreme Court case interpreting it. </p>
<h2>A suit over sign language</h2>
<p>Based on that law, and the overall principle of equal educational opportunity, in 1979 the parents of 8-year-old Amy Rowley, who was born deaf, <a href="https://www.law.cornell.edu/supremecourt/text/458/176">filed suit in a federal court</a> against school officials in the Hendrick Hudson Central School District, just north of New York City, who had denied their request for a sign language interpreter to accompany Amy during classes.</p>
<p>A hearing officer and lower courts agreed that Amy was entitled to an interpreter. But the school district <a href="https://www.law.cornell.edu/supremecourt/text/458/176">appealed to the Supreme Court</a>. In their ruling, the justices noted that Amy did well in school and could read her teachers’ lips. They declared that an “<a href="https://supreme.justia.com/cases/federal/us/458/176/">appropriate</a>” education – which was required by law – only needed to be “<a href="https://www.scotusblog.com/2017/01/argument-preview-level-educational-benefit-appropriate-children-disabilities/">sufficient to confer some educational benefit</a>.” The school only needed to provide “a basic floor of opportunity” instead of all the help she needed to reach to her full potential.</p>
<p>The court concluded that because she earned passing grades, Amy was not entitled to an interpreter – even though she might have achieved at a higher level with the additional assistance. Not long after the ruling, Amy’s family moved to <a href="http://parentadvocates.org/index.cfm?fuseaction=article&articleID=7288">another school district</a>, where she had the assistance of interpreters – and Amy went on to <a href="https://digitalcommons.nyls.edu/cgi/viewcontent.cgi?article=1001&context=nyls_law_review">earn a Ph.D. and become a university professor</a>.</p>
<h2>Recognizing additional rights</h2>
<p>Over the years following its ruling on the Rowley case, the Supreme Court also took up other cases about the rights of students with disabilities. In <a href="https://caselaw.findlaw.com/us-supreme-court/484/305.html">Honig v. Doe</a> in 1988, the court declared that officials must involve parents in decisions about how to discipline students whose misbehaviors are <a href="https://www.law.cornell.edu/uscode/text/20/1415">manifestations of their disabilities</a>.</p>
<p>In 1984, the court ruled that students who needed it were entitled to services they needed, such as <a href="https://www.law.cornell.edu/supremecourt/text/468/883">catheterization</a> while in school, and even, after a 1999 ruling, the personal attendance of a <a href="https://www.law.cornell.edu/supct/html/96-1793.ZO.html">nurse during the school day</a>.</p>
<p>In addition, the court addressed the rights of parents of children with special needs. Over the course of various rulings from 1986 to 2012, for instance, the court ruled that parents could <a href="https://www.supremecourt.gov/opinions/06pdf/05-983.pdf">file suit in their own right</a> – not just on behalf of their children – if they disagreed with how public schools were assisting their children. </p>
<p>And parents who want more for their kids than the school district will provide can enroll their kids in <a href="https://www.supremecourt.gov/opinions/11pdf/10-945.pdf">private schools with appropriate services</a> at <a href="https://www.law.cornell.edu/supremecourt/text/471/359">public expense</a>, even if the private schools were <a href="https://www.law.cornell.edu/supct/html/91-1523.ZO.html">not state-approved</a>.</p>
<p>The court has repeatedly ruled that there are some limits on parental rights. The court has regularly held that parents can challenge <a href="https://sites.ed.gov/idea/regs/b/d/300.320">Individualized Education Programs</a>, the legal and clinical documents that spell out a student’s needs and the services promised to meet those needs. </p>
<p>But in 2006, the court ruled that parents <a href="https://www.law.cornell.edu/supremecourt/text/05-18">could not recoup the costs for expert witnesses</a> if they prevailed in court against school boards. Despite <a href="https://www.govtrack.us/congress/bills/112/hr1208/text">three attempts to include that requirement</a> in updates to the law, parents remain on the hook for expert witness fees, which can cost hundreds of dollars per hour.</p>
<p>And in 2007, the justices ruled that the parties challenging students’ Individualized Education Programs, typically parents, <a href="https://www.supremecourt.gov/opinions/06pdf/05-983.pdf">must prove that the plans do not meet children’s needs</a>.</p>
<h2>A shift for the future</h2>
<p>In 2017, 35 years after its decision in Rowley, the Supreme Court revisited its initial low standard requiring just a bare minimum of support for students with disabilities. </p>
<p>In the case of <a href="https://www.supremecourt.gov/opinions/16pdf/15-827_0pm1.pdf">Endrew F. v. Douglas County School District</a>, the justices considered an IEP assigned to a student with autism by a school board in Colorado. They determined that “<a href="https://www.supremecourt.gov/opinions/16pdf/15-827_0pm1.pdf">[t]o meet its substantive</a> obligation under the IDEA, a school must offer an IEP reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.” Progress – and potential – were the new standards, not merely getting by.</p>
<p>Now, 40 years after Rowley, Congress has not fully revisited the IDEA since 2004. And it is unclear whether or how Congress might amend the IDEA to ensure that students with disabilities continue to receive the educational programming this vulnerable population of children needs to thrive in school and beyond.</p><img src="https://counter.theconversation.com/content/181560/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Charles J. Russo does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Four decades after the first Supreme Court ruling on the rights of students with disabilities, Congress has not made clear exactly what it expects of school districts.Charles J. Russo, Joseph Panzer Chair in Education in the School of Education and Health Sciences and Research Professor of Law, University of DaytonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1693722021-10-14T06:09:27Z2021-10-14T06:09:27ZNew research highlights how people with disability in South Sulawesi survived the pandemic<p>The COVID-19 pandemic has had uneven economic, social, psychological and health impacts. It has magnified existing inequalities, including those experienced by people with disability.</p>
<p><a href="https://aipj.or.id/pages/publication/dampak-negatif-yang-dialami-difabel-selama-pandemi-covid-19">A 2020 national rapid assessment</a> of the impact of the pandemic on people with disability in 32 provinces in Indonesia showed nearly 90% of the 1,683 respondents experienced an income drop of a staggering 80%. Many were at a higher risk for certain diseases.</p>
<p>That assessment also demonstrated how the government has been less active in involving people with disability in mitigating the impacts of the COVID-19 pandemic.</p>
<p>Despite the dangers and the limited facilities provided by the government, our most recent research, funded by the Australia-Indonesia Centre, <a href="https://pair.australiaindonesiacentre.org/berita/mengatasi-pandemi-bayangan-covid-19-dan-dampaknya-pada-penyandang-disabilitas/?lang=id">finds</a> that some people with disability and their organisations in South Sulawesi implemented innovative coping strategies to survive during the pandemic.</p>
<h2>Coping strategies</h2>
<p>From November 2020 to January 2021, we conducted this research in three distinct areas of South Sulawesi – urban (Makassar), peri-urban (Gowa) and rural (Bulukumba).</p>
<p>We chose South Sulawesi because the province recorded <a href="https://databoks.katadata.co.id/datapublish/2020/04/03/sulawesi-selatan-punya-kasus-covid-19-terbanyak-di-pulau-sulawesi">the most COVID-19 cases</a> in Sulawesi island during 2020 to early 2021.</p>
<p>Our research shows many people with disability were creative and resilient in the absence of more substantial government support. They devised their own coping strategies to face the challenges of the pandemic. </p>
<p>We spoke with 86 people, including men and women with disability, alongside stakeholders, a mixture of community leaders (formal and informal), government officers involved with disability services and policymakers. The Indonesian Disability Movement for Equality, PerDIK (<a href="https://ekspedisidifabel.wordpress.com/">Pergerakan Difabel Indonesia untuk Kesetaraan</a>), and its members and networks provided expertise in inclusive design and data collection.</p>
<p>We identified at least two coping methods in South Sulawesi.</p>
<p><strong>1. Creative communication</strong></p>
<p>Many women and men living with disability in South Sulawesi developed innovative disability-specific strategies for overcoming communication barriers.</p>
<p>Information about COVID-19 was not consistently provided in accessible formats. Television broadcasts often lacked sign language interpreters and subtitles. Communication between people also became more difficult. As Fadhlan (not a real name) explained: </p>
<blockquote>
<p>“During the pandemic, we are obliged to wear a mask. It is such a constraint to me because it hinders me in reading lip movements and communicating […]. They have difficulty in understanding my needs and not everybody wants to take off their masks when speaking to me.”</p>
</blockquote>
<p>Those like Fadhlan who rely on lip-reading responded to mask wearing by cultivating other communication methods. Often they used mobile phones in novel ways such as through text messaging, transcription applications or web captioners. </p>
<p><strong>2. Community support</strong></p>
<p>The second strategy was to ask for and accept help from extended family members, employers and the community. This help took the form of daily assistance, food, financial and communication support. </p>
<p>Several people with disability mentioned they supported other people living with disability during COVID-19. Support was often targeted, with people in a disability community helping address the particular challenges that community faces. One of them is Nurul, who said:</p>
<blockquote>
<p>“There was a child who had leprosy (my neighbour). I took medicine for the child at the health centre. There was also a person in X street who asked me for help. She has graduated from high school, but doesn’t have a vehicle, so we […] help her to the healthcare centre […]”</p>
</blockquote>
<p>The resilience and active participation of people with disability in community development during the pandemic was a core finding of our report.</p>
<h2>Our research contribution</h2>
<p>Our findings show how the pandemic has worsened the living standards of women and men with disability. They also show how the restrictions imposed during the pandemic – which created a sense of isolation – impacted participants’ mental health.</p>
<p>Our research attempts to build on prior studies through its choice of methodology and theory.</p>
<p>Our research utilises a <a href="https://www.tandfonline.com/doi/full/10.1080/13642987.2020.1783533">social model approach</a>, which takes a rights-based view of people with disability. The social model considers disability not as biological “abnormality” or “deficiency” that must be fixed or treated, but as the result of the oppressive ways in which society is organised and operates. </p>
<p>This model also positions people with disability as citizens who have basic rights and are worthy of respect. This approach values people with disability in their relations with the wider community and various institutions including state institutions. In this way, people with disability are viewed as active and agentic, in contrast to common misconceptions of people with disability as passive and burdensome.</p>
<p>A gender perspective also allowed us to better understand how women with disability were disproportionately affected. The women we spoke to reported that COVID introduced new physical and financial obstacles to accessing basic necessities, including education and health services. </p>
<p>Worldwide, we know that the COVID-19 pandemic has <a href="https://www.un.org/development/desa/disabilities/news/dspd/covid-19-disability.html">magnified systemic barriers to equality and inclusion</a> for women and girls with disability. </p>
<p>Our qualitative approach, the social model and a broad gender perspective allowed our research to capture the concerns of people with disabilities in a more dynamic manner. This highlighted the various impacts of social interactions, including oppression and marginalisation.</p>
<h2>So, what’s next?</h2>
<p>Despite the dynamic coping strategies used by people with disability, the stories of many of our respondents suggest government support is still relatively limited.</p>
<p>Many people, particularly women with disability, did not receive direct cash support during the pandemic.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/424865/original/file-20211005-19-16i9ls1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/424865/original/file-20211005-19-16i9ls1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/424865/original/file-20211005-19-16i9ls1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/424865/original/file-20211005-19-16i9ls1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/424865/original/file-20211005-19-16i9ls1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/424865/original/file-20211005-19-16i9ls1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/424865/original/file-20211005-19-16i9ls1.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 person with a disability gets an injection of the COVID-19 vaccine at the Bina Daksa Wirajaya Social Institution Makassar, South Sulawesi.</span>
<span class="attribution"><span class="source">ANTARA FOTO/Arnas Padda/yu/wsj.</span></span>
</figcaption>
</figure>
<p>Government support for people with a disability in South Sulawesi during the pandemic was inconsistent and inadequate. There was poor communication about what support was available. People often only found out about it through third parties. </p>
<p>Disability-specific data collection is also inadequate in South Sulawesi. This made it unclear what needs people with disability may have, and how many people might require assistance.</p>
<p>To overcome this, our research provides several recommendations to government to ensure people with disability have access to basic necessities and have their rights upheld during the pandemic:</p>
<ol>
<li><p>improve communication methods so the delivery of critical information on health and safety includes the needs of those with speech, hearing or sight impairments</p></li>
<li><p>expand government subsidy schemes to ensure people with disability have access to basic services such as water, electricity and communications</p></li>
<li><p>collect comprehensive data to better target the distribution of aid and organisational support</p></li>
<li><p>liaise with disabled people’s organisations that are bearing the load and underpin their efforts with funding and training.</p></li>
</ol>
<p>The government can strengthen policies and programs to ensure the COVID-19 pandemic and future emergencies do not disproportionately impact people with disability – especially women with disability.</p>
<hr>
<p><em>PerDIK’s associates, particularly Dr Ishak Salim and Syarif Ramadhan, as well as all interviewers and informants, played a critical role in the research</em>.</p>
<p><em>Rafika Ramli, Ulil Ahsan, Amanda Pricella and Betrin Natasya, early-career researchers at Hasanuddin University’s Graduate School’s Center of Excellence for Interdisciplinary and Sustainability Studies (CEISS), assisted with the translation and first analysis of the interview data.</em></p>
<p><em>The Australian government supported this study through the Australia-Indonesia Centre’s PAIR initiative.</em></p>
<p><em>The Conversation Indonesia is supported in publishing this article by the Australia-Indonesia Centre.</em></p>
<hr>
<p><em>Rachel Noorajavi translated this article from Indonesian.</em></p><img src="https://counter.theconversation.com/content/169372/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sudirman Nasir receives funding from The Australia Indonesia Centre</span></em></p><p class="fine-print"><em><span>Becky Batagol receives funding from Australian Department of Foreign Affairs and Trade and the Australia-Indonesia Centre.</span></em></p><p class="fine-print"><em><span>Claire Spivakovsky receives funding from The Australian-Indonesia Centre. </span></em></p><p class="fine-print"><em><span>Muhammad JUNAID receives funding from The Australia-Indonesia Centre </span></em></p><p class="fine-print"><em><span>Raffaella Cresciani receives funding from The Australia-Indonesia Centre. </span></em></p><p class="fine-print"><em><span>Helen Brown is a member of the Australia Indonesia Business Council (AIBC). Her start-up, Bisnis Asia, received Australian government funding for research on foreign investment in collaboration with CIPS Indonesia. She works for The Australia-Indonesia Centre, which is funded by the Australian Government.</span></em></p><p class="fine-print"><em><span>Marlene Millott is employed by The Australia-Indonesia Centre which is funded by the Australian Government.
</span></em></p>Our latest research shows that women and men with a disability in South Sulawesi use dynamic and creative strategies to help overcome inequalities during the pandemic.Sudirman Nasir, Senior lecturer and researcher at the Faculty of Public Health, Universitas HasanuddinBecky Batagol, Associate Professor of Law, Monash Sustainable Development Institute, Monash UniversityClaire Spivakovsky, Senior Lecturer in Criminology, The University of MelbourneMuhammad JUNAID, Dr/Periset dan pengajar, Universitas HasanuddinRaffaella Cresciani, PhD Candidate in Criminology, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1644762021-08-08T10:38:39Z2021-08-08T10:38:39ZWhy it makes good business sense to hire people with disabilities<figure><img src="https://images.theconversation.com/files/414372/original/file-20210803-15-tncgsm.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C7830%2C5204&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">There are myriad myths about workers with disabilities. New research suggests they perform at a higher level, are absent less and are more loyal than employees without disabilities. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 175px; border: none; position: relative; z-index: 1;" allowtransparency="" src="https://narrations.ad-auris.com/widget/the-conversation-canada/why-it-makes-good-business-sense-to-hire-people-with-disabilities" width="100%" height="400"></iframe>
<p>Managers sometimes assume that hiring employees who live with disabilities will be more expensive. <a href="https://doi.org/10.1007/s10869-018-9602-5">They worry</a> that these employees will perform at a lower level, be absent more often, need expensive accommodations and will then quit.</p>
<p>But should managers worry about these things?</p>
<p><a href="https://cdpp.ca/">We present a way</a> for managers to evaluate both the net costs and benefits of having employees with disabilities, and we consider all these factors. When <a href="https://cjds.uwaterloo.ca/index.php/cjds/article/view/669">we tested</a> our method at one company, we found that it actually saved money by hiring people with disabilities.</p>
<p>To calculate the net value of employing people with disabilities, companies can run what is known as a <a href="https://doi.org/10.1007/978-1-4020-5779-3_20">utility analysis</a> that takes into account direct costs associated with wages, benefits, training and accommodation. It also considers indirect costs such as turnover and absences. </p>
<p>Direct costs are easily tabulated, but indirect costs are based on industry estimates. </p>
<p>For example, turnover costs can be estimated as one to 2.5 times the annual salary of the worker who leaves, depending on how lengthy the search is for a replacement and how much on-boarding is required. These costs are balanced against the value provided by the employees, taking into account employee performance evaluations and pay rates. </p>
<h2>Disabled employees were more productive</h2>
<p>A food services company that runs hospital cafeterias and university food courts allowed us to analyze their internal data for one department with 46 employees. <a href="https://connellyresearch.com/sites/default/files/pdfs/Hiring%20employees%20with%20disabilities%20infographic.pdf">Our analysis</a> suggests that this unit had $108,381 in added value that year by hiring employees with disabilities. </p>
<p>The employees with disabilities at this company performed at a slightly higher level compared to their counterparts without disabilities. Only 56 per cent of the non-disabled employees had average or above-average performance, but all the employees with disabilities met this standard. Similarly, the non-disabled employees had an average of 6.5 absences per year, but workers with disabilities had an average of only three absences over the same time period. </p>
<p>At this company, the employees with disabilities also had much lower turnover. In fact, none of the employees with disabilities left the company during the year of our study. In contrast, 18 per cent of the non-disabled employees quit. </p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/414376/original/file-20210803-19-1h0jdzv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A young blind woman uses a computer with refreshable braille technology in an office setting." src="https://images.theconversation.com/files/414376/original/file-20210803-19-1h0jdzv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/414376/original/file-20210803-19-1h0jdzv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/414376/original/file-20210803-19-1h0jdzv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/414376/original/file-20210803-19-1h0jdzv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/414376/original/file-20210803-19-1h0jdzv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/414376/original/file-20210803-19-1h0jdzv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/414376/original/file-20210803-19-1h0jdzv.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 young blind woman uses a computer with refreshable braille technology.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Managers sometimes <a href="https://doi.org/10.1007/s10926-011-9302-8">believe in false stereotypes</a> that employees with disabilities are unreliable and likely to quit, but in this company they were loyal and reliable. This is consistent with what we have learned from our conversations with managers at other companies. </p>
<p>Several managers gave us examples of employees with disabilities who were dedicated and committed workers once they had been given an opportunity and welcomed into the company. One chain restaurant executive, in particular, started hiring more workers with disabilities because he noticed that they were very unlikely to quit.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/employers-miss-out-on-talent-by-overlooking-workers-living-with-disabilities-119626">Employers miss out on talent by overlooking workers living with disabilities</a>
</strong>
</em>
</p>
<hr>
<p>What might surprise some managers is that the costs of the accommodations for employees with disabilities were quite low. One employee, a chef, was deaf and could not hear food orders — so the counter staff would write them down for him. The company estimated that the cost of the paper and pens to do this was just five dollars. </p>
<p>Most of the other employees with disabilities only needed some scheduling flexibility to deal with medical flareups or appointments. This was easily provided and these accommodations were similar to those provided to everyone else. </p>
<h2>Providing accommodations</h2>
<p>Naturally, employees hired by companies will have varying disabilities. Information on how to provide accommodations is available from a number of sources, including the <a href="https://www.askjan.org">Job Accommodation Network</a> and local community organizations like the <a href="https://gatewayassociation.ca/">Gateway Association</a>, the <a href="https://www.ccrw.org/">Canadian Council on Rehabilitation and Work</a>, <a href="https://www.neilsquire.ca/">the Neil Squire Association</a> and the <a href="https://www.marchofdimes.ca/en-ca">March of Dimes</a>. Businesses should also ask their employees what they need to be successful.</p>
<figure class="align-center ">
<img alt="A man with an artificial leg moves lumber in a warehouse." src="https://images.theconversation.com/files/414373/original/file-20210803-19-mmvdwv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/414373/original/file-20210803-19-mmvdwv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/414373/original/file-20210803-19-mmvdwv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/414373/original/file-20210803-19-mmvdwv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/414373/original/file-20210803-19-mmvdwv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/414373/original/file-20210803-19-mmvdwv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/414373/original/file-20210803-19-mmvdwv.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">Businesses should ask their employees with disabilities what kind of accommodations they need to be successful.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Although the accommodation costs in our example might sound unusually low, the typical costs of workplace accommodations tend to be lower than what managers expect. According to industry estimates, accommodations actually cost <a href="https://askjan.org/topics/costs.cfm">less than US$500 in nearly 60 per cent of cases</a>, or about $625 in Canada. </p>
<p>Why? A company may offer <a href="https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2015005-eng.htm">modified duties or flexible schedules</a> to employees with disabilities. These are generally not expensive to provide. </p>
<p>And in instances where there is a price tag for an accommodation — for example, an ergonomic mouse or standing desk — these are often one-time costs. More expensive investments, like wheelchair ramps, are rarer but can be amortized over several years. </p>
<h2>Going beyond CSR</h2>
<p>Many advocates for hiring people with disabilities focus on doing so to fulfil <a href="https://doi.org/10.1007/s10672-009-9125-3">corporate social responsibility expectations</a>. We agree that corporate social responsibility is important, but the financial component is critical to highlight to business leaders.</p>
<p>Companies can use their internal employee data to develop a plan that supports equity, diversity and inclusion efforts when it comes to people with disabilities. </p>
<p>Job applicants who live with disabilities represent a largely untapped sector of the workforce — unemployment rates among these workers tend to be about double that of non-disabled workers, with comparable age and <a href="https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=1310034801">education levels</a>. </p>
<p>Managers who are seeking loyal employees who perform well should consider hiring people with disabilities. It’s a smart business strategy.</p><img src="https://counter.theconversation.com/content/164476/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Catherine E. Connelly and Sandra L. Fisher are members of and receive funding from the Canadian Disability Participation Project (CDPP), which is funded by SSHRC.</span></em></p><p class="fine-print"><em><span>Sandra L. Fisher receives funding from the CDPP/SSHRC.</span></em></p>Hiring people with disabilities isn’t just the right thing to do, it’s a smart business strategy.Catherine E. Connelly, Canada Research Chair and Professor of Organizational Behaviour, McMaster UniversitySandra L. Fisher, Senior Research Fellow and Lecturer, Human Resource Management and Technology, Münster University of Applied SciencesLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1636852021-07-29T14:24:59Z2021-07-29T14:24:59ZHow the travel industry still ignores people with disabilities<figure><img src="https://images.theconversation.com/files/413569/original/file-20210728-13-1c52qmp.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C8479%2C5449&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/wheelchair-woman-sitting-arms-on-beach-442169896">Shutterstock/wavebreakmedia</a></span></figcaption></figure><p>As restrictions are gradually lifted, travelling abroad will be a high priority for many people. But for a disabled person, getting away on holiday can seem like a distant dream – with or without a pandemic.</p>
<p>People with disabilities are still subjected to systematic discrimination when it comes to travel. They face barriers that non-disabled people do not, which can prevent them from going on holiday – or at least drastically limit their choice about where to go and what to do.</p>
<p>Even before COVID-19, <a href="https://www.visitbritain.org/new-accessible-tourism-market-research">one survey</a> found that 52% of adults with a disability in the UK had not taken a holiday anywhere in the previous 12 months.</p>
<p>The reasons are well known. Disabled people are often deprived of key three things: good information, appropriate facilities and positive attitudes from other people.</p>
<p>To this end, many countries, <a href="https://www.gov.uk/guidance/equality-act-2010-guidance">including the UK</a>, have introduced specific legislation to address these inequalities. The United Nations’ <a href="https://www.ohchr.org/EN/ProfessionalInterest/Pages/RightsOfDisabledPersons.aspx">Declaration on the Rights of People with Disabilities</a> asserts the rights of disabled people to participate in cultural life, leisure, recreation and sports. </p>
<p>You might expect this kind of political action means disabled people have equal access to travel. But when <a href="https://www.researchgate.net/publication/353520748_Strategic_approaches_to_accessible_ecotourism_Small_steps_the_domino_effect_and_paving_paradise">I interviewed</a> disabled travellers and people who work in ecotourism – in the UK, US, Australia, Canada and Sweden – it became apparent that many holiday providers fail to value their disabled customers.</p>
<p>There are some for example, who merely aim to comply with regulations. They do not think there is a sufficient market for disabled guests, so they only made practical changes – such as investing in ramps – if the law strictly demanded it.</p>
<p>One disabled traveller told how he mentioned to an ecolodge manager: “You just need to fix a couple of things in the room and it’ll be good.” </p>
<p>The manager replied: “Why should we bother? We don’t make enough money out of you guys to really justify it.”</p>
<p>Other business owners found such changes expensive to implement, but were motivated by keeping up with “good practice”. For this group, being disability-friendly made good business sense – but their efforts were often incomplete, only featuring in certain parts of the site for example, or for one particular kind of disability. </p>
<p>As one study participant noted: “Instead of having the whole place accessible, mobility-wise, we just make sure at least two of the units and the main public areas are. That’s an alternative that seems to have worked.” </p>
<p>It may seem odd that ecotourism – a form of tourism that values ethics and sustainability – does not appear to be leading the industry in tearing down barriers to disabled travel. </p>
<p>But <a href="https://www.tandfonline.com/doi/full/10.1080/09669582.2021.1951278">recent research</a> found that even businesses with the highest level of ecotourism accreditation did little to accommodate the needs of disabled guests.</p>
<h2>Universal travel</h2>
<p>With respect to information, only 2% of the websites in that study – which focused on Australia – had a detailed information pack for disabled people to download. And while some businesses considered themselves to be disability-friendly, facilities tended to only consider wheelchair access. </p>
<p>Even then, only 40% of all the websites provided any information to wheelchair users, while 6% mentioned visual disabilities and 8% referred to hearing loss. When it came to intellectual disabilities, only 8% even mentioned them.</p>
<p>Almost all of the websites failed to extend simply courtesies, such as using captions (known as alternative text) to explain to people with visual disabilities what is depicted in a photograph, or subtitling video material to help people with hearing disabilities. A quarter of the businesses required disabled people to contact them ahead of the visit to enquire about suitable facilities.</p>
<figure class="align-center ">
<img alt="Tourist looking at pine forest." src="https://images.theconversation.com/files/413637/original/file-20210728-19-ry5ucm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/413637/original/file-20210728-19-ry5ucm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/413637/original/file-20210728-19-ry5ucm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/413637/original/file-20210728-19-ry5ucm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/413637/original/file-20210728-19-ry5ucm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/413637/original/file-20210728-19-ry5ucm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/413637/original/file-20210728-19-ry5ucm.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">Access is key.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/tourist-backpack-hood-evergreen-pine-forest-1870086214">Shutterstock/Kavun Halyna</a></span>
</figcaption>
</figure>
<p>Thankfully, there are also operators who believe ensuring that disabled people have an equal quality of experience to non-disabled people is an essential condition of being in business.</p>
<p>This kind of approach needs to spread more widely. Disabled people will only truly have a right to a holiday when tourism businesses start to invest in adaptations for them. This means making provisions not only for wheelchair users but for all disability groups. </p>
<p>It also means adapting business practices, updating websites and training staff to be able to serve their disabled guests appropriately and sensitively.</p>
<p>It is estimated that there are around a billion disabled people across the world, representing around 15% of the world’s population. If the tourism industry is not willing to ensure these guests are treated as equals, that should make everyone uncomfortable. If society wants to see travel as a human right, it should be a right for everyone.</p><img src="https://counter.theconversation.com/content/163685/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Brian Garrod receives funding from the Arts and Humanities Research Council.</span></em></p>Good information and appropriate facilities are in short supply.Brian Garrod, Professor of Marketing, Swansea UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1616202021-05-28T14:17:17Z2021-05-28T14:17:17ZCOVID-19: how the pandemic increased food poverty in the UK<figure><img src="https://images.theconversation.com/files/403374/original/file-20210528-24-129ckew.jpg?ixlib=rb-1.1.0&rect=31%2C1%2C965%2C558&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Homeless people often have difficulty finding enough to eat in normal times; the pandemic made things even harder.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/stirling-scotland-uk-february-27-2021-1929934409">Vineeth Jose Vincent/Shutterstock</a></span></figcaption></figure><p>Around <a href="https://www.sustainweb.org/news/voicesofthehungry/#:%7E:text=New%20data%20from%20the%20UN,to%20get%20enough%20to%20eat.&text=Based%20on%20these%20estimates%2C%20the,par%20with%20Hungary%20and%20Latvia.">8.4 million Britons</a> struggle to get enough to eat, according to the latest figures from the UN, which puts the UK on a par with countries like Latvia and Hungary. This state of affairs is called <a href="http://bath.foodbank.org.uk/wp-content/uploads/sites/108/2020/02/State-of-Hunger-Report-November2019-Digital-min.pdf">food insecurity</a> and it has been on the increase since the <a href="https://spark.adobe.com/page/DAlRb7HdWiHqA/">2008 financial crisis</a> and the <a href="https://www.theguardian.com/society/2020/mar/03/lost-decade-hidden-story-how-austerity-broke-britain">decade of austerity</a> that followed. But in the last year, COVID-19 has made things worse. Because of the pandemic, more people than ever simply do not have enough to eat. </p>
<p><a href="https://foodfoundation.org.uk/wp-content/uploads/2020/04/Report_COVID19FoodInsecurity-final.pdf">Early figures</a> suggest a quadrupling of food insecurity in 2020 compared to 2018. This varies from worrying about being able to get enough to eat, to having difficulties getting access to food, to actually going hungry.</p>
<p>In “normal” times, this kind of food insecurity is a risk faced by the most vulnerable in society. This includes those on low incomes or living in poverty and people who lack support networks. Women are <a href="http://uwsoxfampartnership.org.uk/wp-content/uploads/2020/06/Food-Insecurity-Literature-Review-Final.pdf">specifically at risk</a> of food insecurity because they head the bulk of <a href="https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/families/bulletins/familiesandhouseholds/2016">single parent households</a> (86%), which make up the <a href="https://trusselltrust.org/wp-content/uploads/sites/2/2017/06/OU_Report_final_01_08_online.pdf">largest number</a> of Trussell Trust food bank users in the UK. </p>
<p>In our <a href="http://uwsoxfampartnership.org.uk/wp-content/uploads/2021/04/Food-insecurity-in-times-of-Covid-19-2021-WEB-FINAL.pdf">recent research</a>, conducted for the <a href="http://uwsoxfampartnership.org.uk">UWS-Oxfam Partnership</a>, we explored how the pandemic escalated the scale of food insecurity in the UK. We did so with a focus on four groups across Scotland: the homeless, young carers, asylum seekers and people with disabilities. These groups are more at risk of not having enough to eat, even in normal times. We also looked at the emerging data and research on COVID-19 and the impact the pandemic has had on food insecurity across the UK. </p>
<h2>Food insecurity</h2>
<p>Through our own and <a href="https://www.food.gov.uk/print/pdf/node/4406">existing research</a>, we established three main factors that have intensified food poverty during the crisis:</p>
<p><strong>1.</strong> Rising need driven mainly by loss of or reduction in income.</p>
<p><strong>2.</strong> New and growing challenges in getting access to food.</p>
<p><strong>3.</strong> The impact of lockdown on the operation of food banks.</p>
<p>We interviewed people from organisations supporting the disabled, homeless, young carers and asylum seekers about how the pandemic affected household finances. For many young carers, lockdown led to immediate loss of employment. Because they are often in low-paid and casual employment, the furlough scheme did not support them. At the same time, the cost of living increased. Travel restrictions made it impossible to travel to shops with cheaper food, so money did not go as far as before when shopping locally. </p>
<p>Disabled people – in particular those told to shield – became more reliant on online shopping. With delivery slots hard to come by and disabled people less likely to have internet access, doorstep services also came with additional costs.</p>
<p>Glasgow has the <a href="https://commonslibrary.parliament.uk/research-briefings/sn01403">largest number</a> of dispersed asylum seekers (3,756) per head of population in the UK and most were relocated into hotels with full-board accommodation at the start of the pandemic. This meant they lost their limited cash entitlement, were dependent on hotel meals and unable to buy the food they needed for health or cultural reasons.</p>
<h2>Lockdown challenges</h2>
<p>COVID-19 exposed the vulnerability of the UK’s food system to the sharp shock of pandemic conditions. <a href="http://doi.org/10.35241/emeraldopenres.13539.2">Research</a> in 2020 noted that the UK food system was dominated by <a href="https://www.thebalancesmb.com/just-in-time-jit-2221262#:%7E:text=A%20just%2Din%2Dtime%20supply%20chain%20is%20one%20that%20moves,synchronized%20with%20the%20subsequent%20operations.">“just-in-time” supply chains</a>, which were severely challenged by stockpiling and panic buying in the first weeks of the pandemic.</p>
<p>Lockdown also demonstrated how vulnerable the UK’s emergency food aid system is and the devastating consequences of food bank closures. In other words, the pandemic showed how quickly food access problems can emerge. The rules around shielding and self-isolation only compounded the situation.</p>
<p>Local authorities delivered food boxes to vulnerable people’s homes, but there was mixed success in terms of quality, quantity and reliability. We discovered that many homeless and disabled people did not hold official “shielder” status despite serious health conditions, which meant they were excluded from food box schemes.</p>
<p>All these issues show how access and income challenges overlap to have a serious impact on availability of food to those who need it most. While rising food insecurity meant a rise in demand for food aid, food banks were forced either to close or reorganise to comply with social distancing and lockdown rules. COVID-19 and its shielding requirements meant that many older volunteers could no longer help out at food banks and so were lost just when they were really needed.</p>
<p>The many food aid services which continued working during lockdown drastically changed how they operated. They became large-scale food delivery services instead of drop-in places. This was a huge problem for many of their users. For example, we heard how food banks are important for the homeless and young carers because they offer an escape from isolation. They are also places to find benefit advice and mental health support. All of this disappeared with the lockdown. </p>
<h2>Preparation and resilience</h2>
<p>Despite the best efforts of food banks, the crisis showed that the emergency food aid sector was ill-equipped to deal with the surge in food insecurity created by COVID-19.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/6PxfQZG0jfE?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
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<p>The best approach to dealing with food insecurity, both in normal times and in times of crisis, is to make sure that people have enough money to buy the food they need. Financial resilience is key. Better preparations for supplying those who cannot access food despite having the financial means are also required.</p>
<p>The <a href="https://www.bigissue.com/latest/what-is-the-right-to-food/">Right to Food movement</a>, which advocates to enshrine in law people’s right to proper food is gaining momentum. Perhaps the crisis will prompt policy change – certainly, some <a href="https://natcen.ac.uk/news-media/press-releases/2020/october/british-social-attitudes-survey-reveals-softening-of-attitudes-towards-welfare-and-immigration">public attitudes</a> research suggests that the British public is open to a stronger <a href="https://www.theguardian.com/society/2021/may/27/uk-public-think-covid-boost-to-universal-credit-should-be-permanent">social security system</a>. </p>
<p>Devolved administrations have also used their powers to make more funding available to support unpaid carers and increase crisis grant budgets. These governments can also make the changes needed to help homeless people. Asylum seekers should also be included in the advocacy happening across the UK, to anchor the “right to food” in law. Perhaps then food insecurity will become a thing of the past.</p><img src="https://counter.theconversation.com/content/161620/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The most vulnerable in society have been hit hard by the pandemic when it comes to getting enough to eat. So what can be done?Hartwig Pautz, Senior Lecturer in Social Sciences, University of the West of ScotlandDamian Dempsey, PhD Student in Housing & Economic Development Policy, University of the West of ScotlandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1602472021-05-04T19:11:13Z2021-05-04T19:11:13ZIf New Zealand can radically reform its health system, why not do the same for welfare?<figure><img src="https://images.theconversation.com/files/398512/original/file-20210504-13-usjxqx.jpg?ixlib=rb-1.1.0&rect=2%2C2%2C1668%2C1065&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">GettyImages</span></span></figcaption></figure><p>The government’s recently announced <a href="https://www.beehive.govt.nz/release/major-reforms-will-make-healthcare-accessible-all-nzers">health sector reforms</a> go well beyond what its <a href="https://systemreview.health.govt.nz/about/expert-review-panel/">expert health review</a> had recommended. This was rightly welcomed by many in the sector, but it does raise the question: if radical change can be made in health, why not the same for welfare?</p>
<p>For years now, benefit recipients, welfare advocates and their allies have been calling for a significant increase in core benefit levels to provide a liveable income. </p>
<p>They have also called for major changes in how Work and Income (WINZ) deals with people with chronic illness and disability and those in relationships; how it treats benefit recipients seeking assistance; and how it makes decisions about discretionary hardship and supplementary assistance. </p>
<p>Back in 2019, the Welfare Expert Advisory Group’s <a href="http://www.weag.govt.nz/weag-report/">analysis</a> stressed that immediate and significant reform in all of these areas was long overdue. It made 42 key recommendations but only a handful have been addressed. Almost two years on, we are still waiting for real action.</p>
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<h2>Life on a benefit ‘soul destroying’</h2>
<p>My <a href="https://www.cpag.org.nz/assets/Covid-19%2520INTERVIEW%2520report%2520FINAL%252012%2520April%25202021.docx%2520%25281%2529.pdf">recent research</a> involving benefit recipients’ experiences during the COVID-19 pandemic suggests this delay is causing real hardship and emotional stress for those relying on core benefits to survive. </p>
<p>Only some of those interviewed had received the full <a href="https://www.workandincome.govt.nz/about-work-and-income/news/2020/1-april-payments.html">$25 per week increase</a> provided in April 2020, due to reduced <a href="https://www.workandincome.govt.nz/products/a-z-benefits/temporary-additional-support.html">Temporary Additional Support</a> payments or increased public housing rents. This year’s <a href="https://www.beehive.govt.nz/release/benefit-settings-rise-line-wages-1-april">indexation</a> of benefits to wages was welcome but inadequate to meet significant shortfalls in weekly income. </p>
<p>They have described their lives as “soul destroying” and a “daily grind”, resulting in feelings of hopelessness, despair and the impression they did not belong to the “team of five million”.</p>
<p>During the national lockdown, for example, already inadequate food budgets were made to stretch even further as shoppers hoarded staples, cheaper options flew off the shelves, and people with disabilities or sole parents who were not allowed to take their children shopping had to pay delivery charges.</p>
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Read more:
<a href="https://theconversation.com/covid-19-is-predicted-to-make-child-poverty-worse-should-nzs-next-government-make-temporary-safety-nets-permanent-147177">COVID-19 is predicted to make child poverty worse. Should NZ's next government make temporary safety nets permanent?</a>
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<h2>Dangers of a two-tier welfare system</h2>
<p>In response to increasing pressure to act on social security, the government has suggested it might establish a two-tier <a href="https://www.stuff.co.nz/business/122356643/do-new-zealand-workers-need-an-national-income-insurance-scheme">unemployment insurance scheme</a>. Workers would contribute directly to an unemployment insurance fund that would pay a significant proportion (possibly up to 80%) of their previous wages if they become unemployed.</p>
<p>But this would simply mean those who have been recently employed will be better off than those who have not.</p>
<p>The same principle underpinned the government’s <a href="https://workandincome.govt.nz/covid-19/income-relief-payment/index.html">Income Relief Payment</a> for those who lost their jobs due to COVID-19. This benefit was paid at a higher rate and with easier eligibility conditions than the standard <a href="https://www.workandincome.govt.nz/products/a-z-benefits/jobseeker-support.html">Jobseeker Support</a>.</p>
<p>Unemployment insurance is common in some countries, so there is considerable international evidence indicating it creates a two-tier system: those already well off due to high wages continue to be privileged by receiving higher unemployment benefits than those on lower wages when they become unemployed.</p>
<p>At least, they are better off for one or two years, before they are relegated to the safety net system that sole parents, people with disabilities or chronic illness, refugees, migrants and others with weak attachment to the labour market are forced to rely on. </p>
<figure class="align-center ">
<img alt="Minister for Social Development Carmel Sepuloni speaking" src="https://images.theconversation.com/files/398514/original/file-20210504-17-1mhl4zn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/398514/original/file-20210504-17-1mhl4zn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/398514/original/file-20210504-17-1mhl4zn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/398514/original/file-20210504-17-1mhl4zn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/398514/original/file-20210504-17-1mhl4zn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/398514/original/file-20210504-17-1mhl4zn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/398514/original/file-20210504-17-1mhl4zn.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">Minister for Social Development Carmel Sepuloni: will she get more to spend in the May 20 Budget?</span>
<span class="attribution"><span class="source">GettyImages</span></span>
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<h2>Privileging the already privileged</h2>
<p>Such systems usually offer very low core benefits and increase social stigma by suggesting these groups are not as “deserving” as those more recently unemployed.</p>
<p>Indeed, one of my research participants described how the temporary Income Relief Payment came as a “kick in the gut” and was a significant blow to their mental health for precisely this reason. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/new-authority-could-transform-maori-health-but-only-if-its-a-leader-not-a-partner-159425">New authority could transform Māori health, but only if it's a leader, not a partner</a>
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<p>A permanent form of unemployment insurance would send the message that we care more about shoring up the middle class, who already own homes and have retirement investments, than ensuring sick and disabled people or sole parents have enough to eat and a healthy home to live in.</p>
<p>Introducing an unemployment insurance system wouldn’t improve the living standards and emotional well-being of the sole parents and those living with disabilities or chronic illness who took part in my research.</p>
<h2>Liveable incomes for all</h2>
<p>Nor would it improve the “<a href="https://www.nzherald.co.nz/nz/end-work-and-incomes-toxic-culture-beneficiaries/2ZKUTE7YXCA43YTIA3JWKVTDZQ/">toxic culture</a>” of WINZ or address many of the other problems highlighted by the Welfare Expert Working Group and various research studies. </p>
<p>Rather, it will reinforce existing inequalities, likely increase child poverty rates, and take up public service time and resources that could be better spent improving the current welfare system.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/children-had-no-say-in-new-zealands-well-being-budget-and-that-matters-118113">Children had no say in New Zealand's well-being budget, and that matters</a>
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<p>The radical reform we need is a system that provides a liveable income for all when we are unable to support ourselves, as is often inevitable at some stage in our lives.</p>
<p>This system would treat benefit recipients with dignity and respect, no matter what their circumstances or prior history, value the contributions sole parents make to society by bringing up our <a href="https://maoridictionary.co.nz/search?idiom=&phrase=&proverb=&loan=&histLoanWords=&keywords=tamariki">tamariki</a>, and recognise the particular needs and strengths of people living with disability or illness.</p>
<p>This is the kind of welfare overhaul I hope is announced in the 2021 Budget.</p><img src="https://counter.theconversation.com/content/160247/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Louise Humpage is affiliated with the Child Poverty Action Group.</span></em></p>Life on social welfare can feel ‘soul destroying’. The May 20 Budget could start to fix that — but an unemployment insurance scheme isn’t the right solution.Louise Humpage, Associate Professor of Sociology, University of Auckland, Waipapa Taumata RauLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1431442020-08-26T12:20:42Z2020-08-26T12:20:42ZForced sterilization policies in the US targeted minorities and those with disabilities – and lasted into the 21st century<figure><img src="https://images.theconversation.com/files/353240/original/file-20200817-18-b7q561.jpg?ixlib=rb-1.1.0&rect=1165%2C26%2C2383%2C2314&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">An operation taking place in 1941 on South Side of Chicago.</span> <span class="attribution"><a class="source" href="https://www.rawpixel.com/image/2301130">Library of Congress</a></span></figcaption></figure><p>In August 1964, the North Carolina Eugenics Board met to decide if a 20-year-old Black woman should be sterilized. Because her name was redacted from the records, we call her Bertha. </p>
<p>She was a single mother with one child who lived at the segregated O'Berry Center for African American adults with intellectual disabilities in Goldsboro. According to the North Carolina Eugenics Board, Bertha had an IQ of 62 and exhibited “aggressive behavior and sexual promiscuity.” She had been orphaned as a child and had a limited education. Likely because of her “low IQ score,” the board determined she was not capable of rehabilitation. </p>
<p>Instead the board recommended the “protection of sterilization” for Bertha, because she was “feebleminded” and deemed unable to “assume responsibility for herself” or her child. Without her input, Bertha’s guardian signed the sterilization form.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/353451/original/file-20200818-14-mzzs17.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A 1950s era pamphlet that reads: The average feebleminded parent cannot be expected to provide good heredity, a normal home, intelligent care - to say nothing of the many other things needed to bring up children successfully." src="https://images.theconversation.com/files/353451/original/file-20200818-14-mzzs17.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/353451/original/file-20200818-14-mzzs17.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=513&fit=crop&dpr=1 600w, https://images.theconversation.com/files/353451/original/file-20200818-14-mzzs17.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=513&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/353451/original/file-20200818-14-mzzs17.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=513&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/353451/original/file-20200818-14-mzzs17.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=644&fit=crop&dpr=1 754w, https://images.theconversation.com/files/353451/original/file-20200818-14-mzzs17.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=644&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/353451/original/file-20200818-14-mzzs17.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=644&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 pamphlet extolling the benefit of selective sterilization published by the Human Betterment League of North Carolina, 1950.</span>
<span class="attribution"><a class="source" href="https://digital.ncdcr.gov/digital/collection/p249901coll37/id/14974/">North Carolina State Documents Collection/State Library of North Carolina</a></span>
</figcaption>
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<p>Bertha’s story is one of the 35,000 sterilization stories we are reconstructing at the <a href="https://ssjlab.weebly.com">Sterilization and Social Justice Lab</a>. Our interdisciplinary team explores the history of eugenics and sterilization in the U.S. using data and stories. So far, we have captured historical records from North Carolina, California, Iowa and Michigan. </p>
<h2>Eugenics</h2>
<p>More than <a href="https://www.huffpost.com/entry/sterilization-united-states_n_568f35f2e4b0c8beacf68713">60,000 people were sterilized in 32 states during the 20th century</a> based on the bogus “science” of eugenics, <a href="https://doi.org/10.1051/medsci/2009256-7641">a term coined by Francis Galton in 1883</a>.</p>
<p>Eugenicists applied emerging theories of biology and genetics to human breeding. White elites with strong biases about who was “fit” and “unfit” embraced eugenics, believing American society would be improved by increased breeding of Anglo Saxons and Nordics, whom they assumed had high IQs. Anyone who did not fit this mold of racial perfection, which included most immigrants, Blacks, Indigenous people, poor whites and people with disabilities, <a href="https://www.hup.harvard.edu/catalog.php?isbn=9780674445574">became targets of eugenics programs</a>. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/353242/original/file-20200817-14-rlngdx.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="An old map of the United States showing the status of state eugenics laws in 1913. About half the states either have laws or are in the process of creating them." src="https://images.theconversation.com/files/353242/original/file-20200817-14-rlngdx.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/353242/original/file-20200817-14-rlngdx.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=508&fit=crop&dpr=1 600w, https://images.theconversation.com/files/353242/original/file-20200817-14-rlngdx.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=508&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/353242/original/file-20200817-14-rlngdx.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=508&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/353242/original/file-20200817-14-rlngdx.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=639&fit=crop&dpr=1 754w, https://images.theconversation.com/files/353242/original/file-20200817-14-rlngdx.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=639&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/353242/original/file-20200817-14-rlngdx.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=639&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">By 1913, many states had or were on their way to having eugenic sterilization laws.</span>
<span class="attribution"><a class="source" href="https://collections.countway.harvard.edu/onview/files/original/3f02811d6a83b0f896c4eaa6794ecffc.jpg">Boston Medical Library in the Francis A. Countway Library of Medicine</a></span>
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<p>Indiana passed the world’s first sterilization law in 1907. Thirty-one states followed suit. <a href="https://doi.org/10.1086/ahr.114.3.776-a">State-sanctioned sterilizations</a> reached their peak in the 1930s and 1940s but continued and, in some states, rose during the 1950s and 1960s. </p>
<p>The United States was an international leader in eugenics. Its sterilization laws actually informed Nazi Germany. The Third Reich’s 1933 “<a href="https://www.ushmm.org/learn/timeline-of-events/1933-1938/law-for-the-prevention-of-offspring-with-hereditary-diseases">Law for the Prevention of Offspring with Hereditary Diseases</a>” <a href="https://press.princeton.edu/books/hardcover/9780691172422/hitlers-american-model">was modeled on laws in Indiana and California</a>. Under this law, the <a href="https://www.hup.harvard.edu/catalog.php?isbn=9780674745780">Nazis sterilized approximately 400,000 children and adults</a>, mostly Jews and other “undesirables,” labeled “defective.”</p>
<h2>Anti-Black racism and sterilization</h2>
<p>The team at the Sterilization and Social Justice Lab has uncovered some remarkable trends in eugenic sterilization. At first, sterilization programs targeted white men, expanding by the 1920s to affect the same number of women as men. The laws used broad and ever-changing disability labels like “feeblemindedness” and “mental defective.” Over time, though, women and people of color increasingly became the target, as <a href="https://www.rutgersuniversitypress.org/fit-to-be-tied/9780813578910">eugenics amplified sexism and racism</a>.</p>
<p><iframe id="SIc36" class="tc-infographic-datawrapper" src="https://datawrapper.dwcdn.net/SIc36/4/" height="400px" width="100%" style="border: none" frameborder="0"></iframe></p>
<p>It is no coincidence that sterilization rates for Black women rose as desegregation got underway. Until the 1950s, schools and hospitals in the U.S. were segregated by race, but integration threatened to break down Jim Crow apartheid. <a href="https://global.oup.com/academic/product/mothers-of-massive-resistance-9780190271718?cc=us&lang=en&">The backlash involved the reassertion of white supremacist control and racial hierarchies</a> specifically through the <a href="https://www.penguinrandomhouse.com/books/155575/killing-the-black-body-by-dorothy-roberts/">control of Black reproduction and future Black lives by sterilization</a>.</p>
<p>In North Carolina, which sterilized the third highest number of people in the United States – <a href="https://journalnow.com/news/local/against-their-will-north-carolinas-sterilization-program/image_acfc2fb8-8feb-11e2-a857-0019bb30f31a.html">7,600 people from 1929 to 1973</a> – women vastly outnumbered men and Black women were <a href="https://uncpress.org/book/9780807855850/choice-and-coercion/">disproportionately sterilized</a>. Preliminary analysis shows that from 1950 to 1966, Black women were sterilized at more than three times the rate of white women and more than 12 times the rate of white men. This pattern <a href="https://www.ucpress.edu/book/9780520299948/how-all-politics-became-reproductive-politics">reflected the ideas</a> that Black women were not capable of being good parents and poverty should be managed with reproductive constraint.</p>
<p>Bertha’s sterilization was ordered by a state eugenics board, but in the 1960s and 1970s, new federal programs like Medicaid also started funding nonconsensual sterilizations. <a href="https://www.worldcat.org/title/population-control-politics-women-sterilization-and-reproductive-choice/oclc/1003747011">More than 100,000</a> <a href="https://nyupress.org/9780814758274/women-of-color-and-the-reproductive-rights-movement/">Black, Latino and Indigenous women were affected</a>.</p>
<p>Many <a href="http://www.pbs.org/independentlens/films/no-mas-bebes/">felt shame and shrouded these experiences in secrecy</a>, not even telling their closest relatives and friends. Others took to the streets and filed law suits to protest forced sterilization. The powerful documentary “<a href="https://www.pbs.org/independentlens/films/no-mas-bebes/">No Más Bebés</a>” tells the story of hundreds of Mexican American women coerced into tubal ligations at a county hospital in Los Angeles in the 1970s. One of them, who became a plaintiff in a case against the hospital, reflecting back decades later said <a href="https://www.nbcnews.com/news/latino/no-m-s-beb-s-looks-back-l-mexican-moms-n505256">her experience “makes me want to cry.”</a></p>
<h2>Forced sterilizations continue</h2>
<p>In the years between 1997 and 2010, unwanted sterilizations were performed on <a href="https://www.foxnews.com/entertainment/new-documentary-illuminates-the-forced-sterilization-of-women-in-california-prison">approximately 1,400 women in California prisons</a>. These operations were based on the same rationale of bad parenting and undesirable genes evident in North Carolina in 1964. The doctor performing the sterilizations told a reporter the <a href="https://www.npr.org/sections/thetwo-way/2013/07/09/200444613/californias-prison-sterilizations-reportedly-echoes-eugenics-era">operations were cost-saving measures</a>.</p>
<p>[<em>Deep knowledge, daily.</em> <a href="https://theconversation.com/us/newsletters/the-daily-3?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=deepknowledge">Sign up for The Conversation’s newsletter</a>.]</p>
<p>Unfortunately, forced sterilization continues on. <a href="https://www.aljazeera.com/indepth/features/2016/07/roma-women-share-stories-forced-sterilisation-160701100731050.html">Romani women have been sterilized unwillingly in the Czech Republic</a> as recently as 2007. In northern China, Uighurs, a religious and racial minority group, have been <a href="https://www.businessinsider.com/china-forcibly-sterilizing-uighur-women-xinjiang-abortions-contraception-ap-2020-6">subjected to mass sterilization</a> and other measures of extreme population control.</p>
<p>All forced sterilization campaigns, regardless of their time or place, have one thing in common. They involve dehumanizing a particular subset of the population deemed less worthy of reproduction and family formation. They merge perceptions of disability with racism, xenophobia and sexism – resulting in the disproportionate sterilization of minority groups.</p><img src="https://counter.theconversation.com/content/143144/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alexandra Minna Stern receives funding from the National Institutes of Health-National Humane Genome Research Institute for portions of this research project. </span></em></p>The US has a long history of forced sterilization campaigns that were driven by the bogus ‘science’ of eugenics, racism and sexism.Alexandra Minna Stern, Professor of American Culture, History, and Women's Studies, University of MichiganLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1431682020-08-09T11:22:06Z2020-08-09T11:22:06ZCOVID-19: Financial future grim for Canadians with disabilities, health conditions<figure><img src="https://images.theconversation.com/files/351304/original/file-20200805-22-shgel.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1920%2C1040&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The COVID-19 pandemic has put people with disabilities and chronic health conditions in a precarious position.</span> <span class="attribution"><span class="source">(Pixabay)</span></span></figcaption></figure><p>As Canadians, we like to think we’ve done a <a href="https://www.vox.com/2020/5/4/21242750/coronavirus-covid-19-united-states-canada-trump-trudeau">far better job</a> responding to COVID-19 than other places, including our <a href="https://ourworldindata.org/grapher/daily-covid-deaths-per-million-7-day-average?country=CAN%7EDEU%7ESWE%7EUSA">neighbour to the south</a>. </p>
<p>Our relative success lies in swift responses to and consistent messaging about the pandemic in non-partisan ways. Nationwide physical distancing measures were done in consultation with public health officials, resulting in a national shutdown beginning in March 2020. Our understanding and approach to the pandemic has also led to a relatively more cautious recovery. </p>
<p>Consistent economic support was also an important pillar of the federal government’s response to COVID-19. Canadian wage earners out of work or at reduced hours received a taxable monthly basic income of $2,000 per month (the Canada Emergency Response Benefit known as the CERB), helping many Canadians face the resulting economic tumult. </p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/how-to-build-a-better-canada-after-covid-19-transform-cerb-into-a-basic-annual-income-program-140683">How to build a better Canada after COVID-19: Transform CERB into a basic annual income program</a>
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</p>
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<p>But many groups have been left out of government policies and programs and are struggling. </p>
<p>At the University of Toronto and University of Alberta, we conducted a nationwide survey, to be published at a later date, that revealed Canadians with disabilities and chronic health conditions are very worried about getting COVID-19. </p>
<p>Respondents also said they feel like their voices aren’t being heard by policy-makers. They’re concerned about their long-term economic situation.</p>
<h2>Do not qualify for the CERB</h2>
<p>Many people with disabilities and health conditions who qualify for disability benefits do not qualify for the more generous COVID-19 benefits, like the CERB, even though the pandemic has imposed on them additional financial strains. </p>
<p>One immunocompromised respondent with multiple health conditions including diabetes, hypertension and obesity noted that they already live on $400 less than those getting CERB. </p>
<blockquote>
<p>“They complain at how ‘little’ they are getting, all while telling us disabled that we should be grateful that we get as much as we do. Sorry, but how are we expected to permanently survive on this while they can’t survive even a few months on their savings and hundreds more than we get? Knowing that costs are going up, yet income is not going to for at least another four years is terrifying. I’m unable to work any time in the near future, so I am falling further and further behind with each passing day.” </p>
</blockquote>
<p>A lack of additional disability supports has meant that vulnerable groups have had to look to other means for supporting themselves through the pandemic. </p>
<figure class="align-right ">
<img alt="A weathered brown wallet stuffed with credit cards" src="https://images.theconversation.com/files/351308/original/file-20200805-290-33329y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/351308/original/file-20200805-290-33329y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/351308/original/file-20200805-290-33329y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/351308/original/file-20200805-290-33329y.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/351308/original/file-20200805-290-33329y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/351308/original/file-20200805-290-33329y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/351308/original/file-20200805-290-33329y.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 are running up credit-card debt in order to cover their living expenses.</span>
<span class="attribution"><span class="source">(Pixabay)</span></span>
</figcaption>
</figure>
<p>We found that about 40 per cent of our respondents have added to their credit card debt since the start of the pandemic, and almost half say that the pandemic is negatively affecting their ability to pay their debts. </p>
<p>Over a third of our respondents say they are struggling to pay their rent, mortgage and utility bills because of COVID-19. Sadly, over half our sample say they are struggling to pay for groceries. </p>
<h2>Incurring extra costs</h2>
<p>An individual with a physical disability and who is also immunocompromised noted:</p>
<blockquote>
<p>“There has been no additional financial support, but like everyone else, we are incurring extra costs for essentials as we need things delivered or help with everyday shopping and chores.”</p>
</blockquote>
<p>The pandemic is also limiting respondents’ abilities to prepare for future financial emergencies. Almost two-thirds of respondents say they are struggling to save money during the pandemic. Instead, many are having to dip into their savings to make ends meet. </p>
<p>A homemaker with chronic health problems told us she used $15,000 from her savings just to get by. With her husband unable to find work, she says:</p>
<blockquote>
<p>“We just get further and further behind and there is no additional help. I get none.… What am I supposed to do? I feel very left out. I’m very depressed and feel like there is no hope. Every day when you think it can’t get any worse something worse comes up.”</p>
</blockquote>
<p>Even with comparatively better conceived and consistent policies in Canada, and relatively more generous social and economic supports to counter the negative effects of COVID-19, vulnerable people are still being left out.</p>
<h2>Too little, too late?</h2>
<p>Over a million Canadians have a <a href="https://www.canada.ca/content/dam/cra-arc/prog-policy/stats/dtc-stats/DTC-2018-tbl1-2018_e.pdf">Disability Tax Credit certificate (DTC)</a> and a significant majority of those are for an <a href="https://www.canada.ca/content/dam/cra-arc/prog-policy/stats/dtc-stats/DTC-2018-tbl3-2018_e.pdf">indeterminate duration</a>. Only recently, <a href="https://www.canada.ca/en/department-finance/news/2020/07/government-introduces-legislation-to-support-canadian-workers-businesses-and-persons-with-disabilities.html">Carla Qualtrough</a>, Canada’s employment minister, proposed a onetime $600 payment to people with disabilities holding a valid DTC certificate.</p>
<p>That may be too little, too late. It certainly won’t be enough to mitigate the economic devastation the pandemic leaves behind. </p>
<p>People with disabilities in this country already experience low employment and low earnings, <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/cars.12268">living paycheque to paycheque</a>. They are also more likely to live in poverty. </p>
<p>Added setbacks during the pandemic could prove insurmountable as we enter into some sort of recovery, running the risk of further marginalizing people with disabilities and health conditions.</p><img src="https://counter.theconversation.com/content/143168/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>Disabled Canadians and those with chronic health conditions have been left out of government COVID-19 policies and programs and are struggling financially.David Pettinicchio, Associate Professor, Sociology, University of TorontoMichelle Maroto, Associate Professor of Sociology, University of AlbertaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1422622020-08-05T18:33:42Z2020-08-05T18:33:42ZCOVID-19 has isolated disabled people from family, love, sex<figure><img src="https://images.theconversation.com/files/351132/original/file-20200804-24-1xoveur.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4495%2C2954&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Many disabled people are facing difficulties maintaining and forming intimate relationships during COVID-19.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>For the <a href="https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018002-eng.htm">millions of disabled people</a> living in Canada, COVID-19 containment measures have posed unique challenges to their health and well-being. </p>
<p>Those challenges have included increased social isolation, loss of personal support workers, disruption of vital health services and difficulties accessing basic necessities and information. Many disabled people are also facing difficulties maintaining and forming intimate relationships during COVID-19.</p>
<p>It’s been well-documented that disabled people encounter more complex barriers and constraints to exercising their rights to “<a href="https://kenplummer.com/publications/selected-writings-2/intimate-citizenship/">intimate citizenship</a>,” which refers to our rights to access family, friends, sex and sexuality, and to parent. These rights are enshrined in the United Nations’ <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html">Convention on the Rights of Persons with Disabilities</a>, which Canada signed and ratified.</p>
<p>We are just starting to understand how the pandemic has intensified these barriers.</p>
<p>Even before the pandemic, <a href="https://irisinstitute.ca/wp-content/uploads/sites/2/2017/07/CACL-and-PFC-Brief-Accessibility-and-Poverty-Reduction-Final-02-June-2017.pdf">a significant number of disabled people reported feeling socially isolated and lonely</a>. Social isolation has a number of negative repercussions, including <a href="https://doi.org/10.1016/j.tics.2020.05.016">poor mental and physical health</a>. The isolation and loneliness that many disabled people typically experience has been exacerbated by responses to the COVID-19 pandemic.</p>
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<p>
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<strong>
Read more:
<a href="https://theconversation.com/loneliness-could-kill-you-87217">Loneliness could kill you</a>
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<h2>Activities put on hold</h2>
<p>For example, due to social distancing measures, many of the programs, activities and spaces that disabled people make use of have been temporarily suspended.</p>
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<img alt="A disabled athlete wearing a helmet is seen, his head bowed, racing in his bright green racing wheelchair." src="https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Many of the places and activities disabled people enjoy are unavailable during the pandemic.</span>
<span class="attribution"><span class="source">Seth Kane/Unsplash</span></span>
</figcaption>
</figure>
<p>Unfortunately, some disabled people are only able to see their romantic partners at these organized activities. Similarly, some may need staff support, people who will help them pursue social, romantic and sexual activities, and these supports have been scaled back to the basics. For example, staff may support disabled people in navigating dating apps, staying in touch with romantic partners and participating in community events where they can meet people. </p>
<p>Even during normal times, accessible spaces where disabled people can form intimate relationships are extremely limited. These limited spaces and opportunities are related to ableist beliefs that disabled people are undesirable and not interested in or capable of having romantic and sexual lives. These beliefs deny disabled peoples’ agency.</p>
<p>Even when recognized, sexuality is often seen as a luxury, rather than a right. In general, <a href="https://www.theguardian.com/commentisfree/2019/mar/18/disabled-people-sexuality-dating-society-taboo-marginalise">disability and sexuality remains a taboo</a> — constrained, policed, prohibited. Consequently, this important aspect of social life has been overlooked during the pandemic.</p>
<h2>Connecting with partners almost impossible</h2>
<p>For those who are involved in institutionalized care arrangements, they may find that their time and daily routines are even more restricted than before. Opportunities to connect with family, friends and romantic/sexual partners are very difficult to secure.</p>
<figure class="align-center ">
<img alt="A woman sit on a wheelchair-bound man's lap as he points to something in the distance on a beach." src="https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.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">Connecting with romantic partners can be next to impossible for disabled people during the pandemic.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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</figure>
<p><a href="https://www.mississauga.com/opinion-story/10072508-group-homes-need-to-rethink-visiting-rules-during-covid-19/">Visitation bans and lack of contact with family members</a> have cut disabled people off from their support systems and people familiar with their needs. </p>
<p>Families of disabled people have also been at a loss in terms of access to information, guidance and services related to fast-changing circumstances brought by COVID-19.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/im-scared-parents-of-children-with-disability-struggle-to-get-the-basics-during-coronavirus-139467">'I'm scared': parents of children with disability struggle to get the basics during coronavirus</a>
</strong>
</em>
</p>
<hr>
<p>There is a <a href="https://eugenicsnewgenics.com/2014/05/14/isolation-then/">history of forced institutionalization in Canada</a>. For disabled people who have experienced institutionalization, who lack access to the communities where they live, who are unable to visit with family, friends or romantic and sexual partners, <a href="https://www.cbc.ca/news/opinion/opinion-covid-19-public-health-institutions-risk-1.5510546">the recent separation from community life can take on a different meaning</a>. Amid COVID-19, unfortunately, institutionalized care can look a lot like institutionalization.</p>
<p>Many disabled people living in their own homes or with family members, on the other hand, require support from others in their daily lives. Having support persons in their home may, however, increase their vulnerability to COVID-19. </p>
<figure class="align-center ">
<img alt="A disabled man smiles as he rubs noses with his father in a park." src="https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C6016%2C4016&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.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">Visitation bans and lack of contact with family members has cut off disabled people from their support systems and people familiar with their needs.</span>
<span class="attribution"><span class="source">(Piqsels)</span></span>
</figcaption>
</figure>
<p>At the same time, if direct care workers are unable or unwilling to come into work, people with disabilities may not have access to necessary supports, including personal care, food access, parenting support or support for virtual social connection.</p>
<h2>Gender-based violence</h2>
<p>The pandemic has also raised serious concerns around gender-based violence. Prior to the pandemic, <a href="https://www.dawncanada.net/main/wp-content/uploads/2014/03/English-Violence-January-2014.pdf">disabled women</a>, <a href="https://www.transequality.org/sites/default/files/docs/usts/USTS%20Full%20Report%20-%20FINAL%201.6.17.pdf">disabled trans women</a> and <a href="https://www.amnesty.ca/blog/rights-sex-workers-are-being-ignored-covid-19-response-conversation-jenn-clamen-canadian">woman-identifying disabled sex workers</a> already experienced higher rates of forms of abuse and violence when compared to non-disabled women. COVID-19 has increased these risks significantly.</p>
<p>The isolation that disabled people are experiencing may also be worsened by the fact that some, if not many, individuals <a href="https://aoda.ca/disability-and-technology-barriers/">lack access to technology</a> like computers, the internet and cellphones. These technologies would allow them to remain connected with others. </p>
<p>Some people may require support or training to use these technologies, support and training that’s no longer available. Others may not be “allowed” to use those technologies in their care homes. Disabled people are commonly infantilized (particularly people with intellectual disabilities) and viewed as incapable of navigating important technological resources.</p>
<h2>Left behind</h2>
<p>Disabled people are being left behind in our response to COVID-19. This is evident in the <a href="https://globalnews.ca/news/7039419/covid-19-disability-benefit-even-if-approved-would-miss-all-kinds-of-people/">meagre benefit that was initially offered to disabled people by the federal government</a> and in the myriad ways planning has not included them.</p>
<p>Importantly, within the larger and diverse disability community, some experience greater risk and disadvantage than others. <a href="https://www.peoplefirstofcanada.ca/wp-content/uploads/2020/04/Editorial-April15-2020-Markham-Response.jpg">Self-advocates with intellectual disabilities from People First Canada have shared how it feels to be “the left behind of the left behind.”</a></p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1275775200177553408"}"></div></p>
<p>It is essential that when addressing the current pandemic that no one is forgotten in our response.</p>
<p>Considerations with respect to disability, age, sexuality, gender, race, class, citizenship and social status must be taken into account.</p><img src="https://counter.theconversation.com/content/142262/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ann Fudge Schormans has in the past received funding from SSHRC and from the Developmental Service Branch of the Ontario government for research projects focused on intimate citizenship and parenting with an intellectual disability. Both projects have been completed.</span></em></p><p class="fine-print"><em><span>Alan Santinele Martino and Margaret Campbell 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>Even before the pandemic, disabled people reported feeling socially isolated and lonely. Their plight has only been exacerbated by responses to the COVID-19 pandemic.Alan Santinele Martino, PhD Candidate, Sociology, McMaster UniversityAnn Fudge Schormans, Associate professor of social work, McMaster UniversityMargaret Campbell, Adjunct assistant professor, Sociology, St. Thomas University (Canada)Licensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1432182020-08-05T14:52:10Z2020-08-05T14:52:10ZBritain’s public toilet shame: time for equal access to decent facilities for all<figure><img src="https://images.theconversation.com/files/351294/original/file-20200805-16-kzmokt.png?ixlib=rb-1.1.0&rect=4%2C2%2C1647%2C1204&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The coronavirus lockdown has amplified the problem of access to clean and safe public toilets for everyone.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-vector/funny-wc-restroom-symbols-266672837">Shutterstock</a></span></figcaption></figure><p>As lockdown began to be relaxed in England from mid-May and people started venturing out for the first time since March, crowds flocked to parks, beaches and other beauty spots to take exercise, enjoy the outdoors and reunite with friends and family. While the taste of freedom may have been sweet, the smell often wasn’t.</p>
<p>At the time, with most public toilets still closed, <a href="https://www.lincolnshirelive.co.uk/news/local-news/long-queues-toilets-coast-people-4150562">queues around the block</a> for those that had opened and other options out of use (in shopping centres, cafes and pubs), people who were “caught short” turned to the only places on offer. <a href="https://www.theguardian.com/world/2020/jun/10/closure-of-public-toilets-causing-anxiety-distress-and-frustration-across-uk">Parks, bushes and residential streets</a> were left with smelly deposits from the general public.</p>
<p>Our work, which explores sustainable ways of managing human waste, points to an important topic for reflection post lockdown: the inadequate provision of safe, clean public toilets in the UK that are fit for purpose. </p>
<p>Most non-disabled people from affluent countries don’t often need to plan their day around toilets: it’s a case of “flush and forget”. Lack of toilet access is more frequently associated with <a href="https://blogs.lse.ac.uk/southasia/2018/08/08/book-review-where-india-goes-abandoned-toilets-stunted-development-and-the-costs-of-caste-by-diane-coffey-and-dean-spears/">low and middle-income countries</a> (LMICs), where an <a href="https://www.who.int/news-room/fact-sheets/detail/sanitation">estimated two billion people</a> still lack access to safely managed toilets, leading to deaths from diarrhoea and other sanitation-related diseases such as cholera, typhoid and polio. But inadequate toilet access has long been a feature of life for many people in the UK, too.</p>
<h2>Toilet inequity in the UK</h2>
<p>Long before the COVID-19 crisis, disabled people and those with gastrointestinal disorders such as <a href="https://www.nhs.uk/conditions/crohns-disease/">Crohn’s disease</a> and <a href="https://www.nhs.uk/conditions/ulcerative-colitis/">colitis</a>, have been forced to navigate toilets that are inaccessible, restricted and policed. This impedes their participation in everyday activities that non-disabled people take for granted.</p>
<p>The pandemic has <a href="https://inews.co.uk/news/coronavirus-covid-19-public-toilets-lockdown-lifted-crohns-asda-433318">amplified this problem</a>. Sanitation is more than just a means of disposing of bodily waste – it facilitates participation in society. Accessible toilets mean <a href="https://journals.sagepub.com/doi/10.1177/0038026119854255">citizenship, dignity and belonging</a>.</p>
<figure class="align-center ">
<img alt="Toilet signs for disabled, pregnant and elderly people" src="https://images.theconversation.com/files/351302/original/file-20200805-475-1fjb9wz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/351302/original/file-20200805-475-1fjb9wz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/351302/original/file-20200805-475-1fjb9wz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/351302/original/file-20200805-475-1fjb9wz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/351302/original/file-20200805-475-1fjb9wz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/351302/original/file-20200805-475-1fjb9wz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/351302/original/file-20200805-475-1fjb9wz.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">People with disabilities or special health conditions and needs have long had to deal with poor toilet provision across the country.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/signs-showing-public-toilets-special-people-1732705589">Shutterstock</a></span>
</figcaption>
</figure>
<p>Apart from <a href="https://www.accessliving.org/newsroom/blog/ableism-101/">ableism</a>, other important discriminatory dimensions are sex and gender. Women’s toilets are <a href="https://www.sciencedirect.com/science/article/pii/0277539595800946?via%253Dihub">frequently undersized</a> compared to men’s – despite menstruation, pregnancy and caring responsibilities for small children which all necessitate more frequent and longer bathroom use. This design flaw is a standard that has existed for decades and has only <a href="https://www.researchgate.net/profile/Clara_Greed/publication/228916130_A_Code_of_Practice_for_Public_Toilets_in_Britain/links/55bf109008ae9289a099e004/A-Code-of-Practice-for-Public-Toilets-in-Britain.pdf">recently been reviewed</a>.</p>
<p>While secrecy around menstruation is often <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0235339">highlighted in other societies</a>, it is easy to overlook the culture of silence around periods in the UK, which <a href="https://journals.sagepub.com/doi/10.1177/0038026119854253">compounds inadequate provision</a> of facilities for women and menstruating people. Public toilets can also be <a href="https://www.theguardian.com/commentisfree/2018/oct/03/public-bathrooms-are-gender-identity-battlefields-what-if-we-just-do-it-right">uncomfortable or even hostile</a> environments for trans and non-binary people – particularly when gender-neutral facilities aren’t available. </p>
<p>This sort of discrimination is compounded by the <a href="https://www.bbc.co.uk/news/uk-45009337">reduction of public toilet provision</a> over the past decade, and can result in the digestive system and periods becoming a “<a href="https://www.tandfonline.com/doi/abs/10.1080/713668884">leash</a>”, preventing some people from venturing far in case there is no access to a toilet.</p>
<p>Cleaning and maintenance of toilets is vital. But sanitation workers and cleaners remain largely <a href="https://washmatters.wateraid.org/blog/the-unsung-heroes-of-the-covid-19-pandemic">unrecognised and undervalued</a>, even though their public health contribution should <a href="https://leftfootforward.org/2020/08/after-pay-rise-luton-hospital-cleaners-still-wont-earn-a-living-wage/?mc_cid=04ababaf1e&mc_eid=07f10b9f05">arguably receive similar</a> appreciation to that of porters and cleaners in hospitals. Instead of being protected, toilet cleaners – among other typically low-paid but essential workers – are <a href="https://theconversation.com/coronavirus-class-divide-the-jobs-most-at-risk-of-contracting-and-dying-from-covid-19-138857">more at risk</a> of contracting and dying from COVID-19.</p>
<p>This highlights another humbling truth for the UK: discriminatory treatment of sanitation workers is not an issue reserved only for <a href="https://www.who.int/news-room/detail/14-11-2019-new-report-exposes-horror-of-working-conditions-for-millions-of-sanitation-workers-in-the-developing-world">LMICs</a>, but occurs within our society too.</p>
<h2>A better future</h2>
<p>Easing of lockdown has prompted urgent discussion about how to reopen public toilets safely. <a href="https://www.bbc.co.uk/news/uk-52774794">Innovations</a> such as foot-operated flush pedals, one-way systems and sensors for water, soap, paper towels and bins reduce shared touchpoints and proximity. But this is a timely opportunity to consider how <a href="https://journals.sagepub.com/doi/10.1177/0038026119854274">equitable</a> and suitable provision for women, trans and non-binary people, and the needs of disabled people can be addressed. The economic and societal benefits of adequate public toilets have never been clearer.</p>
<p>The crisis also highlights the importance of responsible attitudes towards the <a href="https://blog.bham.ac.uk/business-school/2020/04/22/how-societies-respond-to-social-distancing-orders/">collective</a> good. Many actions can be taken by individuals to reduce asymptomatic spread, from wearing a mask to diligent handwashing and <a href="https://www.telegraph.co.uk/global-health/climate-and-people/put-seat-flushing-toilet-avoid-spread-covid-19-scientists-urge/">closing the toilet lid</a> after use.</p>
<p>As <a href="https://www.telegraph.co.uk/global-health/science-and-disease/coronavirus-news-lockdown-end-uk-hairdressers-pubs-reopen-hotels/">bars, pubs, and other places reopen</a>, a sense of personal responsibility towards societal health, and respect for sanitation workers who facilitate it, will be more<a href="https://doi.org/10.1016/j.envint.2020.105790"> important</a> than ever.</p>
<p>Toilets function as a bridge between public and private spaces, signifying who should and shouldn’t be present. They stand as <a href="https://www.jstor.org/stable/24461652">political symbols of power and inclusion</a>. With COVID-19 reshaping how we move and interact in public spaces, it is time to recognise the importance of public toilets – and the people who look after them – to equitable, dignified and healthy participation in public life. Now more than ever, we must appreciate that nature’s call can only be put on hold for so long.</p><img src="https://counter.theconversation.com/content/143218/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Natalie Boyd Williams receives funding from NERC for her PhD. </span></em></p><p class="fine-print"><em><span>Heather Roxburgh receives funding from NERC, the Parkes Foundation, and the Royal Geographical Society for her PhD. </span></em></p><p class="fine-print"><em><span>Jennifer Dickie received funding from the Scottish Alliance for Geosciences, Environment & Society (PECRE award) to investigate the links between energy and sanitation in India and NERC funding for Natalie Boyd Williams' PhD studentship. </span></em></p>Coronavirus has amplified the fact that inadequate toilet access has long been a feature of UK life for many, including women and the disabled. Vulnerable people deserve better.Natalie Boyd Williams, PhD Researcher, University of StirlingHeather Roxburgh, PhD student, University of StirlingJennifer Dickie, Lecturer in Environmental Geography, University of StirlingLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1433992020-07-26T18:58:22Z2020-07-26T18:58:22ZThe Americans with Disabilities Act at 30: A cause for celebration during COVID-19?<figure><img src="https://images.theconversation.com/files/349437/original/file-20200724-15-110gdo8.jpg?ixlib=rb-1.1.0&rect=2%2C18%2C665%2C352&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">President George H.W. Bush signing the American Disabilities Act into law on July 26, 1990. </span> <span class="attribution"><span class="source">George Bush Presidential Library and Museum/NARA</span></span></figcaption></figure><p>When President <a href="https://www.npr.org/2018/12/03/672817727/remembering-george-h-w-bush-a-champion-for-people-with-disabilities">George Herbert Walker Bush signed the Americans with Disabilities Act</a> (<a href="https://www.ada.gov/ada_intro.htm">ADA</a>) into law on July 26, 1990, we doubt he was thinking about protecting people with disabilities during a pandemic. How could he? It was unimaginable to conjure up the catastrophe wrought by the coronavirus. We can excuse that oversight.</p>
<p>But Congress should have known better. Of the US$3 trillion dollars appropriated in the <a href="https://home.treasury.gov/policy-issues/cares">CARES Act</a> in response to COVID-19 pandemic, <a href="https://www.hhs.gov/about/news/2020/04/21/hhs-announces-nearly-1-billion-cares-act-grants-support-older-adults-people-with-disabilities-community-during-covid-19-emergency.html">less than $1 billion</a> was dispersed to the states to support older people and individuals with disabilities. This neglect of people with disabilities impairs the ADA on its 30th anniversary.</p>
<p>But advocacy from the disability rights community has had a marginal effect. The Democratic <a href="https://edlabor.house.gov/imo/media/doc/2020-05-12%20Heroes%20Act%20-%20Health%20Fact%20Sheet.pdf">House version</a> of the HEROES Act now being debated in the Senate has done much better. It includes <a href="https://www.disabilityscoop.com/2020/05/18/house-oks-covid-19-relief-plan-with-more-payments-for-people-with-disabilities/28354/">significant</a> funds to assist people with disabilities during the pandemic, earmarking $10 billion to $15 billion to pay for home and community based services for the next year. This Medicaid funding can help keep people with disabilities in their homes and out of <a href="https://www.cdc.gov/coronavirus/2019-ncov/community/shared-congregate-house/guidance-shared-congregate-housing.html">congregate and institutional settings</a> where they are especially vulnerable to COVID-19.</p>
<p>The House version of the bill also helps to fund hazard pay and needed access to personal protective equipment for essential health care workers who support people with disabilities. And it offers $200 million in funding for housing and provisions for paid leave for family caregivers. It also provides $500 cash payments to dependent adults with disabilities – individuals who did not qualify for stimulus checks in the original CARES Act in March.</p>
<p>But all this remains aspirational. As of this writing it is doubtful that the Republican <a href="https://www.nbcnews.com/politics/congress/senate-gop-white-house-reach-tentative-1-trillion-pact-break-n1234663">Senate version</a> will be as attentive to the needs of disabled Americans. Senate Republicans seek to slash the $3 trillion House bill by a third. Hopefully, the needs of people with disabilities will make the cut just as we commemorate the passage of the ADA.</p>
<p>No doubt this will be a weekend of celebrations lauding the ADA. And there is much to celebrate. Jon Meacham in his <a href="https://www.penguinrandomhouse.com/books/112696/destiny-and-power-by-jon-meacham/">biography of the first President Bush</a> hailed the ADA as “the most sweeping civil rights measure in a generation.”</p>
<p>A central mandate of the ADA is to make the goods of society accessible to people with disabilities and overcome their segregation in civil society through reasonable accommodation that allows them to go to work, live with their neighbors, and avoid institutionalization.</p>
<p>But let’s not delude ourselves with historic sentimentality as disability law is placed under tremendous stress by the pandemic. It would be especially tragic, and run counter to the ADA, if the disabled community were returned to the shadows by COVID-19 either through neglect or inattention.</p>
<h2>Disability rights are civil rights</h2>
<figure class="align-center ">
<img alt="Protesters in San Francisco in 1977." src="https://images.theconversation.com/files/349440/original/file-20200724-33-m0qbjm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/349440/original/file-20200724-33-m0qbjm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=459&fit=crop&dpr=1 600w, https://images.theconversation.com/files/349440/original/file-20200724-33-m0qbjm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=459&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/349440/original/file-20200724-33-m0qbjm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=459&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/349440/original/file-20200724-33-m0qbjm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=577&fit=crop&dpr=1 754w, https://images.theconversation.com/files/349440/original/file-20200724-33-m0qbjm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=577&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/349440/original/file-20200724-33-m0qbjm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=577&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Protesters in San Francisco in 1977 express their opposition to the lack of implementation of Section 504 of the Rehabilitation Act.</span>
<span class="attribution"><span class="source">Anthony Tusler</span></span>
</figcaption>
</figure>
<p>It is too easy to forget disability rights as the nation rightly addresses the legacy of structural racism prompted by the Black Lives
Matters movement. But to do so would be to ignore the deep intersections between racial and disability injustice. And it would fundamentally misread the legacy of the civil rights movement, one of whose many contributions – and derivatives – was disability rights.</p>
<p>The stories of civil and disability rights are intertwined. One historical anecdote speaks to the close linkage: Before the passage of the <a href="https://www.access-board.gov/the-board/laws/rehabilitation-act-of-1973">Rehabilitation of Act of 1973</a>, a precursor of the ADA, <a href="https://mn.gov/mnddc/ada-legacy/ada-legacy-moment11.html">Sen. Hubert Humphrey first tried to amend the Civil Rights Act of 1964</a> to ban discrimination against people with disabilities in federally funded programs. As the nation gains a deeper appreciation of civil rights, it is important to remember that disability rights are civil rights.</p>
<p>And they are not fair weather rights. In our view, the ADA must be operative in good and bad times. People with disabilities are especially vulnerable during the pandemic. They disproportionately live, or are at risk of living, in congregate settings where they can become tinder for the virus. And the everyday inconveniences of the pandemic suffered by folks without a disability are doubly challenging for people with a disability.</p>
<h2>ADA compliance during COVID-19</h2>
<figure class="align-center ">
<img alt="Drive-through testing sites, like this one in Florida, can pose a challenge for people with disabilities." src="https://images.theconversation.com/files/349427/original/file-20200724-31-1ny1f5v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/349427/original/file-20200724-31-1ny1f5v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=386&fit=crop&dpr=1 600w, https://images.theconversation.com/files/349427/original/file-20200724-31-1ny1f5v.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=386&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/349427/original/file-20200724-31-1ny1f5v.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=386&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/349427/original/file-20200724-31-1ny1f5v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=485&fit=crop&dpr=1 754w, https://images.theconversation.com/files/349427/original/file-20200724-31-1ny1f5v.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=485&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/349427/original/file-20200724-31-1ny1f5v.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=485&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Lines of cars wait for a COVID-19 test in Miami Gardens, Florida. Drive-through testing sites can pose a challenge for people with disabilities.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/Virus-Outbreak-Florida/d6f551571682430c8859b3da44b766af/18/0">AP Photo/Wilfredo Lee</a></span>
</figcaption>
</figure>
<p>Those without disabilities complain about wearing a mask or being deprived of dinner at the neighborhood bistro. But people with disabilities have more formidable challenges. Just imagine you’re disabled and need to get a COVID-19 test. Your state has set up a drive-through testing center. The problem is you can’t drive or are unable to sit in a car for several hours to wait for the test.</p>
<p><a href="https://www.disabilityrightsnebraska.org/">Disability Rights Nebraska</a> has filed a complaint with the U.S. Department of Health and Human Services about TestNebraska, the state’s COVID-19 mobile testing program, claiming the program discriminated against people with disabilities. Nebraska Gov. Pete Ricketts essentially conceded the discrimination when he <a href="http://netnebraska.org/article/news/1221753/disabled-advocates-say-testnebraska-not-accessible">told Nebraska’s PBS and NPR</a> that “what we needed to do is to continue to work on getting the system down for the regular customers, so to speak, if you want to think about it – the drive-up customers that the system was originally designed to serve.”</p>
<p>What did Gov. Ricketts mean by regular customers? Are people with disabilities somehow irregular and unworthy? Invoking a <a href="https://www.csus.edu/indiv/c/chalmersk/econ184sp09/johnrawls.pdf">Rawlsian theory of justice</a>, not to mention the mandates of the ADA, shouldn’t people with the greatest need be who the state prioritizes?</p>
<p>In a <a href="https://www.disabilityrightsnebraska.org/resources/covid19-updatesandresources.html/article/2020/06/18/federal-civil-rights-complaint-against-testnebraska-people-with-disabilities-are-regular-people-governor-ricketts">letter to Roger Severino</a>, the director of the HSS Office of Civil Rights, Disability Rights Nebraska cites one responsible citizen with a disability who had trouble getting tested. She had developed a sore throat, fatigue, nausea and muscle aches, all potential signs of COVID-19. She lived at home and depended upon a ventilator. Her doctor told her to go to the drive-through testing site. But she was unable to drive there safely by herself and was worried that she might expose someone else if they drove her to the site. Her doctor told her to wait and see how things went and call an ambulance if she needed to go to the emergency room. Clearly this barrier to care is a violation of the letter and spirit of the Americans with Disability Act and cannot stand.</p>
<p>The <a href="https://www.washingtonpost.com/health/as-cases-surge-lines-for-covid-19-tests-sometimes-stretch-miles-in-the-summer-heat/2020/07/01/f0951586-ba4b-11ea-80b9-40ece9a701dc_story.html">endless lines of cars</a> snaking through parking lots in Florida, Arizona and Texas waiting for COVID-19 testing reminds us of the final scene from “<a href="https://en.wikipedia.org/wiki/Field_of_Dreams">A Field of Dreams</a>.” The headlights stretch out into the Iowa twilight affirming that if you build it they will come. But in the context of COVID-19 that’s not enough. You need to build it so that everyone can come. This means accommodating all who are currently living with disabilities and the <a href="https://pubmed.ncbi.nlm.nih.gov/32700223/">newly disabled survivors of COVID-19</a> who will be left with lifelong challenges. As we celebrate every life that is saved, we need to remember that <a href="https://fedace.org/files/MSCFEDACE/2020-1/14-12-39-6.admin.FEDACE_triptico__elDanoCerebralAdquiridoInfantil.pdf">those lives deserved to be lived</a>.</p>
<p>As the nation celebrates the 30th anniversary of the ADA, this law is more important than ever. Congress must include adequate funds in the forthcoming HEROES Act to ensure ADA compliance during the pandemic. Anything less turns any celebration into a hollow bromide.</p><img src="https://counter.theconversation.com/content/143399/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Joseph J. Fins receives funding as follows: I am principal investigator of an NIH BRAIN Initiative grant entitled, "Cognitive Restoration: Neuroethics and Disability Rights." I also receive book royalties from Cambridge University Press for "Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness" which addresses ethics, brain injury and disability rights. From 2017-18, I was principal investigator on a grant from the Greenwall Foundation entitled, "When Neuroscience meets Disability Law: An Ethical Mandate to Address the Needs of Patients with Severe Brain Injury." Professor Bagenstos is a co-investigator on this grant. Finally, I am Principal Investigator of a study entitled, "Assistive Technology in Pediatric Brain Injury following In-patient Rehabilitation: Access, Barriers and Burdens on Patients and Families.” (in collaboration with Blythedale Children’s Hospital) funded by the Weill Cornell Medicine Clinical Translational Science Center (CTSC) and Blythedale Children's Hospital.
Affiliations:
Board of Trustees, Hastings Center;
Advisor to the Board, An Saol Foundation, Dublin Ireland; and
Co-Chair, Advisory Board, National Institute on Disability and Rehabilitation Research (NIDRR) Model System, Spaulding Rehabilitation Network, Harvard Medical School and Partners Health Care.</span></em></p><p class="fine-print"><em><span>Samuel Bagenstos does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Congress needs to make sure the HEROES Act includes adequate funding for people with disabilities.Joseph J. Fins, The E. William Davis Jr, M.D. Professor of Medical Ethics and Professor of Medicine at Weill Cornell Medicine, Cornell UniversitySamuel Bagenstos, Frank G. Millard Professor of Law, University of MichiganLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1370902020-05-13T14:39:36Z2020-05-13T14:39:36ZCommunity based workers can help disabled people access services during COVID-19<figure><img src="https://images.theconversation.com/files/334396/original/file-20200512-82388-1vku42f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Health workers go door-to-door to screen for COVID-19 in Pretoria, South Africa. </span> <span class="attribution"><span class="source">Alet Pretorius/Gallo Images via Getty Images</span></span></figcaption></figure><p>People with disabilities face stigma because of their impairments. They are often <a href="https://rhap.org.za/wp-content/uploads/2015/10/Disability-and-rehabilitation-Essential-considerations-for-equitableaccessible-and-poverty-reducing-health-care-in-South-Africa.pdf">marginalised</a>, more so if they have <a href="https://www.ajol.info/index.php/ajpsy/article/view/54357">psycho-social</a> <a href="https://journals.sagepub.com/doi/abs/10.1177/0308022618817281">disabilities</a>. This makes it difficult for them to access basic services such as healthcare. </p>
<p>But community based workers have specialised skills and experience working at a household and community level. They are able to identify, screen and support vulnerable individuals and families. These workers are part of an essential service in health systems across Africa. They include community health workers, home based carers, community rehabilitation workers and community development workers. </p>
<p>We conducted a <a href="https://www.tandfonline.com/doi/abs/10.1080/09687599.2014.958131">study</a> in three rural communities in Botswana, South Africa and Malawi. We found that community rehabilitation workers, community development workers and community health workers bridged the gaps between people with disabilities, their families and services at district level. They worked in communities and were able to help authorities identify families with a person with a disability. </p>
<p>Community <a href="http://www.scielo.org.za/scielo.php?script=sci_arttext&pid=S2310-38332009000200004">based workers</a> are able to build trusting relationships with people with disabilities and their families. This <a href="https://www.tandfonline.com/doi/abs/10.1080/09638280802280429?journalCode=idre20">support helps reduce</a> their anxiety and allows them to participate in community campaigns and events. In doing so, their dignity and sense of belonging in their families and communities is restored. </p>
<p>South Africa’s <a href="http://www.ndmc.gov.za/Pages/Home-Page.aspx">disaster management plan</a> for <a href="https://sacoronavirus.co.za/?__cf_chl_jschl_tk__=e35b06ea0dd4c85c7572c5a91149f77ce162d72b-1589365434-0-AafKsxcI17DyKlZLWmLDU1z4M2WzwMd9B2_7wnVfkw90j9Jq1f4inXytQB43lHpMFGZPZ45b8v6nXnyp66ycY-z0O1qbKFUdTeqKlpfuifbB_8KJEt5VoZWMuO_xFx73PPyB_y-KIagSzE38JaJzz9TG5xaiua3IX-aZv17MS-PL2nRKtuJsyKW502a0_Ho7jdvGzlRZgJrokztteoBnMQSGcu7xwcw7VhDY0l3QRWh9_eX00bJ2twdpY02EHYOeae7Aq7znLG3metDr_IqvY2I">COVID-19</a> targets the most vulnerable. But it needs to respond in a more deliberate way when it comes to people with disabilities. To do this, it needs to harness the critical mass of community based workers as key links to help reduce community transmission of the virus. </p>
<h2>Community based workers</h2>
<p>A <a href="https://www.tandfonline.com/doi/abs/10.1080/09614524.2015.983461">national study</a> on young people with and without disabilities in South Africa showed that community rehabilitation workers are able to reduce inequalities in access to health and social services. They can do this through health literacy and activism, and mobilising community resources through co-ordinated action with the different government departments. </p>
<p>This is why this cadre of worker is well placed during the COVID-19 crisis. They can help ensure that people with disabilities are not left behind in screening, testing and referral to health services. This is particularly important given that many are more vulnerable to ill-health and dying. </p>
<p>Community rehabilitation workers are able to ensure that people with intellectual disability get easy-to-read information about the virus. This includes mitigation strategies and hygiene rules. </p>
<p>Community rehabilitation workers can also raise these matters with community radio station and journalists. This would ensure that it reached vision impaired and blind people.</p>
<p>They are also able to provide emotional and spiritual support to people with disabilities and their families. This is particularly important for mothers or caregivers of children with disabilities.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-lockdown-could-affect-south-africas-children-with-special-needs-137127">How lockdown could affect South Africa's children with special needs</a>
</strong>
</em>
</p>
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<p>Many <a href="https://journals.sagepub.com/doi/abs/10.1177/0308022618817281">people with disabilities</a> are self employed or in informal employment. This means that they have to be included in government and non-government initiatives around income protection. Community based workers are able to access the <a href="http://www.scielo.org.za/scielo.php?script=sci_arttext&pid=S2310-38332009000200004">necessary information</a> that will help people with disabilities to submit forms to the relevant authorities.</p>
<p>In addition, community based workers have links with networks and organisations. This can help them to access relevant information about government’s stimulus packages and interventions for small and medium enterprises. They provide a conduit for information about these resources. They are also able to do early identification (screening, tracing), deal with food security (they know which families are most <a href="https://theconversation.com/south-africa-has-raised-social-grants-why-this-shouldnt-be-a-stop-gap-measure-138023">in need</a> and at risk). They can also ensure continuity of referrals not only for rehabilitation and medical needs, but for creating links to economic resources through government’s assistance to small and medium enterprises. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/coronavirus-could-revolutionize-work-opportunities-for-people-with-disabilities-137462">Coronavirus could revolutionize work opportunities for people with disabilities</a>
</strong>
</em>
</p>
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<h2>Critical catalysts</h2>
<p>Community based workers act as critical catalysts in <a href="https://ajod.org/index.php/ajod/article/view/537">improving the access</a> to health, social and economic development as well as education resources. In turn, this <a href="https://open.uct.ac.za/bitstream/handle/11427/15488/thesis_hsf_2015_clrgra011-thesis.pdf;sequence=1">facilitates integration</a> into existing services. </p>
<p>Their skills, abilities and competencies are integral to the human resources for health workforce. These need to be harnessed in flattening the curve of the COVID-19 pandemic. </p>
<p>At the same time, the mental health and wellbeing of these community based workers and caregivers also needs to be prioritised. They also need personal protective equipment such as gloves, masks, sanitisers and aprons.</p>
<p><em>Kashifa Abrahams, a researcher in the South African parliament, contributed to this article.</em></p><img src="https://counter.theconversation.com/content/137090/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Theresa Lorenzo is a Professor in Disability Studies and Occupational Therapy at the University of Cape Town. Her research was funded by the National Research Foundation and the PERC programme at UCT. </span></em></p><p class="fine-print"><em><span>Anthea Hansen works as a lecturer at the University of Cape Town. </span></em></p><p class="fine-print"><em><span>Harsha Dayal is a Research Associate at the Africa Center for Evidence (ACE), University of Johannesburg. </span></em></p><p class="fine-print"><em><span>Sumaya Gabriels works as a lecturer at the University of Cape Town.</span></em></p>South Africa’s disaster management plan targets the most vulnerable. But it needs to respond in a more deliberate way when it comes to people with disabilities.Theresa Lorenzo, Professor and PhD programme convenor, Division of Disability Studies, and co-lead of Inclusive Practices Africa, Department of Health and Rehabilitation Sciences, Faculty of Health Sciences, University of Cape TownAnthea Hansen, Lecturer, University of Cape TownHarsha Dayal, Research Associate, Africa Centre for Evidence, University of JohannesburgSumaya Gabriels, Lecturer, University of Cape TownLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1336702020-03-23T12:01:53Z2020-03-23T12:01:53ZAncient Greeks purged city-states of disease as they would a human body – and it was the most vulnerable that suffered<figure><img src="https://images.theconversation.com/files/322028/original/file-20200320-22610-96s2wl.jpg?ixlib=rb-1.1.0&rect=0%2C28%2C2052%2C1398&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The Plague of Athens.</span> <span class="attribution"><a class="source" href="https://en.wikipedia.org/wiki/Plague_of_Athens#/media/File:Plague_in_an_Ancient_City_LACMA_AC1997.10.1_(1_of_2).jpg">Michiel Sweerts/ Los Angeles County Museum of Art/Wikipedia</a></span></figcaption></figure><p>With the <a href="https://www.cnn.com/interactive/2020/health/coronavirus-maps-and-cases/">spread</a> of the coronavirus, the world is becoming pointedly aware of the extent to which human beings are <a href="https://www.globalhealthnow.org/2020-01/coronavirus-can-spread-human-contact">interconnected</a>. The rapid spread of the virus has highlighted how much we are dependent upon one another, not just for basic biological needs, but also for our sense of <a href="https://www.theguardian.com/world/2020/mar/18/coronavirus-isolation-social-recession-physical-mental-health">belonging</a> and even <a href="https://www.uschamber.com/series/above-the-fold/quick-take-coronavirus-economic-impact">commerce</a>. </p>
<p>There’s nothing novel about this level of interdependence.</p>
<p>As <a href="https://www.birmingham.ac.uk/staff/profiles/tr/moss-candida.aspx">historians</a> of <a href="https://udayton.edu/directory/artssciences/religiousstudies/henning_meghan.php">early Christianity</a>, we know that from the sixth century B.C., people in the ancient Greek city-state, or polis, were acutely conscious of this dependence. They dealt with <a href="https://www.sciencedirect.com/science/article/pii/S1201971207002123">disease spread</a> as a result of living in <a href="https://www.ncbi.nlm.nih.gov/pubmed/19787658">close quarters</a>.</p>
<p>The intimacy of human interaction meant that the city was seen not just as a community of co-dwellers, but as a kind of body. <a href="https://www.nationalgeographic.org/encyclopedia/greek-city-states/">The Greek city-state</a>, just like the human body, was protected by an outer layer.</p>
<p>The socially marginalized were most at threat when that body came under attack from disease – something that’s <a href="https://theconversation.com/coronavirus-could-hit-homeless-hard-and-that-could-hit-everyone-hard-133214">shared</a> in the situation today. </p>
<h2>The city as a body</h2>
<p>For the city-states, the boundary was the city walls. Patrolling who entered the body was important for cities as well as its people. </p>
<p>The way people thought about protecting the city-states was much the same as they envisioned defending the body from diseases. </p>
<p>If a city had suffered a disaster, such as a famine or a plague, like the body, it needed to be purged or cleansed with <a href="https://books.google.com/books?id=gLInnSVUELYC&pg=PA136&lpg=PA136&dq=Scholia+on+Aristophanes+Plutus+454&source=bl&ots=utclh8bmhN&sig=ACfU3U131CsYsJtXdowkWle3QzV9C-GAYg&hl=en&sa=X&ved=2ahUKEwjV-vquqKfoAhUFWs0KHfc9AUIQ6AEwAHoECAgQAQ#v=onepage&q=Scholia%20on%20Aristophanes%20Plutus%20454&f=false">blood or fire</a>. </p>
<p>The way to purify the polis was a ritual known as the “pharmakos.”</p>
<h2>Purifying the city</h2>
<p>The most detailed example of this ritual is found in fragments of a work by sixth-century Greek poet <a href="https://oxfordre.com/classics/view/10.1093/acrefore/9780199381135.001.0001/acrefore-9780199381135-e-3125">Hipponax</a>, who lived in Colophon, a city in Asia Minor – modern-day Turkey. </p>
<p>Often two people were selected, one male and one female, to serve as representatives of each gender. Later myths describe how those selected were usually society’s <a href="https://books.google.com/books?id=cFuADAAAQBAJ&pg=PA81&dq=kings+pharmakos&hl=en&newbks=1&newbks_redir=0&sa=X&ved=2ahUKEwii5--c0KfoAhU-l3IEHcFCBeoQ6AEwAHoECAUQAg#v=onepage&q=kings%20pharmakos&f=false">elite</a> – kings, princes or virgins – who were to be sacrificed. </p>
<p>But the reality was very different. Modern-day <a href="https://chs.harvard.edu/CHS/article/display/4923.part-i-greece-12-aeschylus-little-ugly-one">surveys</a> of the phenomenon have concluded that the person selected was usually a prisoner, perhaps a criminal or perhaps a prisoner of war, a slave, a person with a disability or a social outcast. They were often described, for example by the 12th-century Byzantine poet, <a href="https://www.theoi.com/Text/TzetzesChiliades5.html">John Tzetzes</a>, as deformed or excessively ugly. </p>
<p>The playwright Aristophanes <a href="https://www.loebclassics.com/view/aristophanes-knights/1998/pb_LCL178.223.xml">writes</a> in “Knights” that they were “exceedingly low-born, penniless, and useless.” Anonymous ancient <a href="https://books.google.com/books?id=Gf-SDQAAQBAJ&pg=PT270&lpg=PT270&dq=pharmakos+mis-treated+by+nature&source=bl&ots=MFVquVtHWs&sig=ACfU3U23j6uXpmmio3DDiqICvfxu38cP6A&hl=en&sa=X&ved=2ahUKEwiU_JOKxqfoAhVrmXIEHTwnBTcQ6AEwAnoECAcQAQ#v=onepage&q=pharmakos%20mis-treated%20by%20nature&f=false">commentary</a> on this passage suggests that it was those “mistreated by nature” that were targets for the rituals.</p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/321998/original/file-20200320-22632-qks3km.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/321998/original/file-20200320-22632-qks3km.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/321998/original/file-20200320-22632-qks3km.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=875&fit=crop&dpr=1 600w, https://images.theconversation.com/files/321998/original/file-20200320-22632-qks3km.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=875&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/321998/original/file-20200320-22632-qks3km.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=875&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/321998/original/file-20200320-22632-qks3km.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1099&fit=crop&dpr=1 754w, https://images.theconversation.com/files/321998/original/file-20200320-22632-qks3km.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1099&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/321998/original/file-20200320-22632-qks3km.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1099&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Aristophanes.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/alun/38029348">Alun Salt</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc-sa/4.0/">CC BY-NC-SA</a></span>
</figcaption>
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<p>This person would be fed with the poor-quality food of slaves. He or she would then be beaten with twigs from a wild fig tree and driven out of the city. </p>
<p>In some cases, the pharmakos victims were not only beaten and exiled, they were also killed. The second-century A.D. author Philostratus tells us that in one outbreak of plague in Ephesus, <a href="https://www.loebclassics.com/view/LCL016/2005/volume.xml">a beggar was stoned to death</a>. </p>
<p>It was believed that this ritual expulsion of the pharmakos <a href="https://www.theoi.com/Text/TzetzesChiliades5.html">served to cleanse</a> the city from the famines or plagues that afflicted it. </p>
<p>According to the classicist <a href="https://rug.academia.edu/JanBremmer">Jan Bremmer</a>, rituals like this <a href="https://books.google.com/books?id=0tPjVJF8roYC&pg=PA57&dq=jan+bremmer+scapegoat+rituals&hl=en&newbks=1&newbks_redir=0&sa=X&ved=2ahUKEwimiPXrxqfoAhUXhXIEHRDKBJsQ6AEwAXoECAEQAg#v=onepage&q=jan%20bremmer%20scapegoat%20rituals&f=false">took place throughout</a> the Greco-Roman world. </p>
<h2>Medical language</h2>
<p>What is noteworthy is that at its root, the meaning of the Greek word “pharmakos” is “drug,” either a healing remedy or a poison. It is unclear to <a href="https://books.google.com/books?id=gLInnSVUELYC&pg=PA136&lpg=PA136&dq=Scholia+on+Aristophanes+Plutus+454&source=bl&ots=utclh8bmhN&sig=ACfU3U131CsYsJtXdowkWle3QzV9C-GAYg&hl=en&sa=X&ved=2ahUKEwjV-vquqKfoAhUFWs0KHfc9AUIQ6AEwAHoECAgQAQ#v=onepage&q=Scholia%20on%20Aristophanes%20Plutus%20454&f=false">modern scholars</a> whether the person designated as a pharmakos was viewed as a poison and the root of the city’s problems or if they were seen as the city’s cure. </p>
<p>In either case, the word pharmakos describes the ritual in explicitly medical language. </p>
<p>This dual nature of the pharmakos is in keeping with ancient medical understandings of drugs as being extremely powerful and having the ability to both <a href="https://brill.com/view/title/14981">kill and cure</a>. </p>
<h2>Parallels with today</h2>
<p>This account of the Greek polis shows us that the protection of the body of the city-state depended on the sacrifice of the socially downtrodden, which has parallels with the situation today. </p>
<p>The most effective way of remaining relatively safe from the coronavirus is practicing social distancing. But that can be done only by those who have jobs that provide them with paid sick leave or the flexibility to work remotely.</p>
<p>For the homeless, hourly wage earners and some others, this is not an option. In China, rural migrant workers, who already faced financial pressures, are now unable to find work in major urban areas because of fear that they might be carrying <a href="https://www.nytimes.com/2020/02/23/business/economy/coronavirus-china-migrant-workers.html?auth=login-google">the virus</a>. </p>
<p>In the United States, the poor are <a href="https://www.theatlantic.com/health/archive/2019/03/typhus-tuberculosis-medieval-diseases-spreading-homeless/584380/">most susceptible</a> to the most negative consequences of a <a href="https://www.ncbi.nlm.nih.gov/pubmed/26400564">public health crisis</a>. They are also the ones most likely to face increased inequalities as a result of the <a href="https://www.nytimes.com/2020/03/15/world/europe/coronavirus-inequality.html?searchResultPosition=1">pandemic</a>. </p>
<p>Today’s escalating public health emergency invites us to think critically about social values that many of us might think we had left in the past – although they exist very much in the present. </p>
<p>[<em>You’re too busy to read everything. We get it. That’s why we’ve got a weekly newsletter.</em> <a href="https://theconversation.com/us/newsletters/weekly-highlights-61?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=weeklybusy">Sign up for good Sunday reading.</a> ]</p><img src="https://counter.theconversation.com/content/133670/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The Greeks treated their city-states like bodies. To protect them from disasters, it was the poor that were often sacrificed.Meghan Henning, Assistant Professor of Christian Origins, University of DaytonCandida Moss, Cadbury Professor of Theology, University of BirminghamLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1136182019-04-11T21:26:34Z2019-04-11T21:26:34ZShould I say ‘disabled person’ or ‘person with a disability’?<figure><img src="https://images.theconversation.com/files/266424/original/file-20190328-139349-1b1a2ox.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Although 90 per cent of Canadians believe accessibility is a human right, our behaviour says something different. Recently, an Alberta woman was turned away from a grocery store for slowing down check-out.</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Recently, an Alberta woman with an obvious physical disability <a href="https://www.cbc.ca/news/canada/edmonton/disabled-woman-banned-from-no-frills-1.5028056">was asked to leave a grocery store and not come back because she could not pack her own groceries quickly enough</a>. According to the report on CBC’s <em>Go Public</em>, the checkout clerk said she was slowing down the line as she struggled to bag her groceries, and the store said no staff were available to help her. Presumably, neither were other patrons. </p>
<p>This story is consistent with what many disabled people say they experience. The Human Rights Commission says that <a href="https://www.chrc-ccdp.gc.ca/eng/content/persons-disabilities">almost 60 per cent of all claims cite disability as the basis for discrimination</a>. People with disabilities are routinely denied the rights we all know they are entitled to. A poll commissioned by the Rick Hansen Foundation, <a href="http://angusreid.org/rhf-accessibility/">found that 90 per cent of Canadians agree that accessibility for people with physical disabilities is a right, not a privilege</a>, but there is still a <a href="https://utorontopress.com/ca/absent-citizens-4">clear prejudice in how disabled people are treated.</a></p>
<p>Disability is a sensitive topic. Fear of saying the wrong thing prevents people from saying anything at all, and makes us avoid having important conversations about disability. This avoidance in turn creates the kind of toxic environment that leads to situations such as the one described above.</p>
<p>In our research at the <a href="http://www.disabilitypolicyalliance.ca">Canadian Disability Policy Alliance</a>, we worked with disability advocacy groups to assemble some guidelines to help readers gain confidence in their ability to participate in positive ways in the dialogue with people with disabilities. Here, we share those guidelines:</p>
<h2>Listen to how people talk about themselves</h2>
<p><a href="https://www.canada.ca/en/employment-social-development/programs/disability/arc/words-images.html">The Canadian government has advocated “people-first” language</a> which emphasizes putting the person first and the disability second: for example, saying a person with a spinal cord injury, or a person with a history of depression. Many disabled people, however, say the disability is not inside of them: they are not a “person with a disability.” Rather they are a “disabled person” — <a href="http://www.captus.com/Information/catalogue/book.asp?Book+Number=1232">someone who is disabled by a world that is not equipped to allow them to participate and flourish</a>. But they are a person either way. Avoid objectifying people by referring to them as “the disabled.” Our advice is to listen to how people talk about their disability themselves, and take your cue from them. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/267166/original/file-20190402-177163-1ktekvt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/267166/original/file-20190402-177163-1ktekvt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/267166/original/file-20190402-177163-1ktekvt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/267166/original/file-20190402-177163-1ktekvt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/267166/original/file-20190402-177163-1ktekvt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/267166/original/file-20190402-177163-1ktekvt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/267166/original/file-20190402-177163-1ktekvt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Listen to how people refer to themselves.</span>
<span class="attribution"><span class="source">Arisa Chattasa /Unsplash</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
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</figure>
<h2>Avoid euphemistic language</h2>
<p>Language like “differently-abled” or “diverse-ability” suggests there is something wrong with talking honestly and candidly about disability. It might even suggest to some people that there is something shameful about disability; or that we can’t talk about it directly unless we make it cute or pretty or funny.</p>
<h2>Avoid unnecessary emotional tone</h2>
<p>Disability is a fact of life for <a href="https://www150.statcan.gc.ca/n1/daily-quotidien/181128/dq181128a-eng.htm">almost one-quarter of Canadians</a>. Having a disability doesn’t make someone a hero, a saint, a victim, a burden or a soldier. This type of hyperbole gets in the way of having authentic relationships with people with disabilities. These words suggest one-dimensional characters. Instead, think: complex, interesting people, just like everyone else.</p>
<h2>Avoid ‘handicap’</h2>
<p>The word handicap or handicapped is viewed as having a negative connotation — an implication that people with disabilities are disadvantaged in society. That social disadvantage is something we should fight against, rather than merely accept and enshrine in language.</p>
<h2>Avoid calling a disabled person a ‘patient’</h2>
<p>A patient is a passive individual who has turned over responsibility for important decisions to a health professional. People with disabilities for the most part live independent lives in the community. They are no more patients than anyone else getting on with their lives in the community.</p>
<h2>Avoid calling non-disabled people ‘normal’</h2>
<p>If non-disabled people are normal, then that means that disabled people are abnormal. Yet disability is the norm for some people. It is alienating and marginalizing to classify someone as “abnormal.”</p>
<h2>Refer to a person’s disability?</h2>
<p>Is the disability a pertinent issue in the conversation you are having or the introduction you are making? We don’t specify a person’s gender, ethnicity, occupation or many other personal details when introducing them. Disability is a condition of life, like those others. It will be salient in some conversations and not in others.</p>
<h2>Here are some ‘dos’</h2>
<p>Do look people with disabilities in the eyes and address them courteously, as you would anyone else.</p>
<p>Do ask if you can help, and how you can help.</p>
<p>Do assume that people with disabilities have something to say, and be prepared to hear it.</p>
<p>Do talk about disability. It’s a fact of life for 22 per cent of Canadians.</p>
<p>The more we talk about it, the easier it gets to have the important conversations we need to have with disabled people, and to ensure that the rights we promise to all Canadians are extended to them.</p><img src="https://counter.theconversation.com/content/113618/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mary Ann McColl receives funding from the Social Sciences and Humanities Research Council of Canada.</span></em></p>Disability is a sensitive topic. Fear of saying the wrong thing prevents people from having important conversations about disability. Here is a guide to get past those barriers.Mary Ann McColl, Professor, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1120582019-02-20T05:23:34Z2019-02-20T05:23:34ZWhy schools desperately need a royal commission into the abuse of disabled people<figure><img src="https://images.theconversation.com/files/259876/original/file-20190220-148506-11mw4ag.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">We need to listen to people with disabilities when they tell us their stories.</span> <span class="attribution"><span class="source">www.shutterstock.com</span></span></figcaption></figure><p>On Monday, the federal parliament agreed on a motion to support a royal commission into the abuse of disabled people. This is a good thing, but we still need a timeline, terms of reference and a whole lot more detail. </p>
<p>This commission has been a <a href="https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Violence_abuse_neglect/Report/c10">long time coming</a>. The <a href="https://disabilityroyalcommissionnow.wordpress.com/2017/04/05/open-letter/">stories</a> we’ve heard over the last few years in the media have been devastating, such as a child with a disability being <a href="http://a4.org.au/node/1530">stripped naked and locked in a closet</a>. We can expect the stories that will be revealed over the course of this royal commission to be similarly hard to hear. </p>
<p>Any of us can be or become disabled. <a href="http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/4430.0.10.001%7E2015%7EMedia%20Release%7EHalf%20of%20older%20Australians%20living%20with%20disability%20(Media%20Release)%7E3">At least a half</a> of us will become disabled as we age. This is not an issue just for “others”, this is an issue for all of us. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-you-need-to-know-if-your-child-with-a-disability-is-starting-school-soon-107275">What you need to know if your child with a disability is starting school soon</a>
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<h2>Why a royal commission?</h2>
<p>Royal commissions deal with systemic and endemic issues. People with a disability need societal support to overcome the barriers their ability presents in a society where able-bodied people are seen as “normal”. This leads to a <a href="https://research.unimelb.edu.au/__data/assets/pdf_file/0012/2400312/Social-Inclusion-Unproofed-manuscript.pdf">systemic power structure</a> that allows those who seek out targets to abuse the ability to do so with very little accountability. </p>
<p>Families are unlikely to complain about the services they rely on for everyday life, in case of retribution or the removal of these services. Such issues were also apparent in the <a href="https://www.childabuseroyalcommission.gov.au/identifying-and-disclosing-child-sexual-abuse">the Royal Commission into Institutional Responses to Child Sexual Abuse</a>. This means it’s very likely many incidents go unreported.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/259891/original/file-20190220-148513-oqq3n7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/259891/original/file-20190220-148513-oqq3n7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/259891/original/file-20190220-148513-oqq3n7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/259891/original/file-20190220-148513-oqq3n7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/259891/original/file-20190220-148513-oqq3n7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/259891/original/file-20190220-148513-oqq3n7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/259891/original/file-20190220-148513-oqq3n7.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">Without this royal commission, we won’t know the full scope of abuse perpetrated against students with disabilities.</span>
<span class="attribution"><span class="source">from www.shutterstock.com</span></span>
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</figure>
<p>Some <a href="https://www.aihw.gov.au/reports-data/health-conditions-disability-deaths/disability/about">20% of Australians have a disability</a>. A royal commission into the violence, abuse and neglect perpetrated against people with disability has the potential to be huge. The Royal Commission into Institutional Responses to Child Sexual Abuse cost upwards of <a href="http://www.lib.latrobe.edu.au/research/ageofinquiry/biogs/E000045b.htm">A$500 million dollars</a>. So the appropriate cost of the proposed royal commission into disability abuse may be well above the A$26 million floated in parliament this week.</p>
<h2>Is there really an issue?</h2>
<p>Looking at school education alone in <a href="https://www.aihw.gov.au/getmedia/34f09557-0acf-4adf-837d-eada7b74d466/Education-20905.pdf.aspx">the latest ABS statistics</a>, 336,000 students with a disability are enrolled in schools. This does not include thousands of children with a disability who are home schooled, often because of the abuse or discrimination they experience in education settings. </p>
<p>Statistics on how common the abuse of children with a disability in schools is can be hard to find. But in 2018, NSW revealed there were <a href="https://www.parliament.nsw.gov.au/lcdocs/other/11846/Answers%20to%20Supplementary%20questions%20PC%203%20Stokes.pdf">657 complaints about staff members</a> in one year alone. Some 438 of these complaints were allegations of sexual or physical abuse against staff working in public schools.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/nsw-could-lead-the-way-in-educating-students-with-a-disability-80812">NSW could lead the way in educating students with a disability</a>
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</p>
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<p>In 2017, shocking allegations were revealed through Freedom of Information requests: <a href="https://www.smh.com.au/national/nsw/government-investigates-246-reports-of-abuse-of-disabled-children-in-nsw-schools-20171009-gyxatt.html">246 reports of abuse</a> were made about staff in the NSW Department of Education. </p>
<p>In 2015 reports revealed that a child with autism was being placed in a “<a href="https://www.canberratimes.com.au/national/act/autism-cage-details-emerge-as-united-nations-investigates-abuse-of-children-20160809-gqo7m8.html">blue cage</a>” in a school. And in Victoria a <a href="https://www.parliament.vic.gov.au/file_uploads/FCDC_Report_into_Services_for_people_with_Autism_Spectrum_Disorder_Z5KhPNcW.pdf">coffin-like box</a> was being used as a form of restraint.</p>
<p>Inquiries in <a href="http://a4.org.au/sites/default/files/Report%20of%20the%20Select%20Committee%20on%20Access%20to%20the%20South%20Australian%20Education%20System%20for%20Students%20with%20a%20Disability.pdf">SA</a>, <a href="https://www.parliament.nsw.gov.au/lcdocs/inquiries/2416/170921%20-%20Final%20report.pdf">NSW</a> and reports from <a href="https://education.qld.gov.au/student/Documents/executive-summary-disability-review-report.pdf">Queensland</a> reveal widespread denial of enrolment, denial of supports and funding, denial of learning, children being beaten, hit and isolated.</p>
<p>Even if the abuse is reported, children with a disability are too often seen as <a href="https://www.alrc.gov.au/publications/witnesses">unreliable witnesses</a>. A disability is wrongly (and offensively) assumed to mean an intellectual disability. It is assumed they simply don’t have the mental capacity. </p>
<p>Education systems often investigate themselves, which presents difficulties with conflict of interest. Most abusers tend to abuse in private, so the findings are either not proven, or a <a href="https://www.sbs.com.au/news/the-feed/children-misdiagnosed-with-intellectual-disabilities-using-inappropriate-tests?fbclid=IwAR2gvDw3XUCfdoTLPbgQPD6Tql31f3Z-wc6BRfUZTXtWFEuctgnO-rNsd30">quick confidentiality settlement</a> is made to silence the alleged victims. A royal commission would mean an independent authority would do the investigating.</p>
<h2>Making it work</h2>
<p>For this royal commission to work, the terms of reference must be broad. It must include all institutions where people with a disability go about their lives – especially schools where children spend most of their time when not in the family home. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/259881/original/file-20190220-148530-pc668m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/259881/original/file-20190220-148530-pc668m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/259881/original/file-20190220-148530-pc668m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/259881/original/file-20190220-148530-pc668m.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/259881/original/file-20190220-148530-pc668m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/259881/original/file-20190220-148530-pc668m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/259881/original/file-20190220-148530-pc668m.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">The terms of reference for this royal commission must be broad enough to make sure everyone gets heard.</span>
<span class="attribution"><span class="source">from www.shutterstock.com</span></span>
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</figure>
<p>It must have power to compel all witnesses, including those at the highest level of state and federal politics, to give evidence. </p>
<p>It must allow those with confidentiality agreements to be able to share their stories without prejudice. </p>
<p>It must be well funded, to allow millions of voices across education, aged care and all institutions and settings to be heard and have access. </p>
<p>It must deal with both historic abuse as well as current systemic, discriminatory and abusive practices. A royal commission can’t change the past, but it can help heal the wounds, shine a light on the present and create a more equal future. This was demonstrated by the royal commission into child sexual abuse.</p>
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<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>
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<p>Given how potentially widespread this issue may be, A$500 million dollars and four years as a time-line may be a good starting point for resourcing this royal commission. It needs to be established now, before the election, so it has bipartisan support. </p>
<p>The leadership must also involve those with a disability. Any investigation that seeks to redress the exclusion and abuse of people with a disability should not further disenfranchise them by excluding them from leadership on this issue. </p>
<hr>
<p><em>This article has been updated since publication to clarify that the ABS statistics mentioned about how many children with disabilities are enrolled in schools are not just confined to mainstream schools.</em></p><img src="https://counter.theconversation.com/content/112058/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David Roy 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>There are systemic problems with the way mainstream schooling treats students with disabilities. A Royal Commission would shed light on these issues and give us a way forward to a more equal future.David Roy, Lecturer in Education, University of NewcastleLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1083072018-12-12T14:33:57Z2018-12-12T14:33:57ZThe next great leap forward? Combining robots with the Internet of Things<figure><img src="https://images.theconversation.com/files/249431/original/file-20181207-128196-1dqr0gk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">'At your service'. </span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/chatbot-artificial-intelligence-robo-advisor-robotic-664115017?src=ZoCQSA4FJ8PcPzp4Fsh_Rg-1-13">Zapp2Photo</a></span></figcaption></figure><p>The <a href="https://theconversation.com/could-your-kettle-bring-down-the-internet-67650">Internet of Things</a> is a popular vision of objects with internet connections sending information back and forth to make our lives easier and more comfortable. It’s emerging in our <a href="https://www.t3.com/features/best-smart-home">homes</a>, through everything from voice-controlled speakers to smart temperature sensors. To improve our fitness, <a href="https://theconversation.com/new-apple-watch-adds-heart-tracking-heres-why-we-should-welcome-ecg-for-everyone-103375">smart watches</a> and <a href="https://www.fitbit.com/uk/home">Fitbits</a> are telling online apps how much we’re moving around. And across entire cities, interconnected devices are doing everything from increasing the <a href="https://www.information-age.com/intelligent-transportation-smart-cities-123473979/">efficiency of transport</a> to <a href="https://www.researchgate.net/publication/258994057_Smart_Environmental_Monitoring_Using_Wireless_Sensor_Networks">flood detection</a>. </p>
<p>In parallel, robots are steadily moving outside the confines of factory lines. They’re <a href="https://www.heraldscotland.com/news/15456345.i-robot-you-confused-meet-the-scottish-droids-which-can-read-your-body-language/">starting to appear</a> as guides in shopping malls and cruise ships, for instance. As prices fall and the Artificial Intelligence (AI) and mechanical technology continues to improve, we will get more and more used to them making independent decisions in our homes, streets and workplaces. </p>
<p>Here lies a major opportunity. Robots become considerably more capable with internet connections. There is a growing view that the next evolution of the Internet of Things will be to incorporate them into the network – opening up thrilling possibilities along the way. </p>
<h2>Home improvements</h2>
<p>Even simple robots become useful when connected to the internet – getting updates about their environment from sensors, say, or learning about their users’ whereabouts and the status of appliances in the vicinity. This lets them lend their bodies, eyes and ears to give an otherwise impersonal smart environment a user-friendly persona. This can be particularly helpful for people at home who are older or have disabilities. </p>
<p>We recently unveiled a <a href="https://www.eu-robotics.net/robotics_league/upload/documents-2017/ERL-SR_TestBedCertificationForm_HWU_web.pdf">futuristic apartment</a> at Heriot-Watt University to work on such possibilities. One of <a href="https://www.eu-robotics.net/robotics_league/erl-consumer/certified-test-beds/index.html">a few</a> such test sites around the EU, our whole focus is around people with special needs – and how robots can help them by interacting with connected devices in a smart home. </p>
<p>Suppose a doorbell rings that has smart video features. A robot could find the person in the home by accessing their location via sensors, then tell them who is at the door and why. Or it could help make video calls to family members or a professional carer – including allowing them to make virtual visits by acting as a telepresence platform. </p>
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<p>Equally, it could offer protection. It could inform them the oven has been left on, for example – phones or tablets are less reliable for such tasks because they can be misplaced or not heard. Similarly, the robot could raise the alarm if its user appears to be in difficulty. </p>
<p>Of course, voice-assistant devices like Alexa or Google Home can offer some of the same services. But robots are far better at moving, sensing and interacting with their environment. They can also engage their users by pointing at objects or acting more naturally, using gestures or facial expressions. These “social abilities” create bonds which are crucially important for making users more accepting of the support and making it more effective. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/robot-carers-could-help-lonely-seniors-theyre-cheering-humans-up-already-106181">Robot carers could help lonely seniors — they're cheering humans up already</a>
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<p>To help incentivise the various EU test sites, our apartment also hosts the likes of the <a href="https://www.edinburgh-robotics.org/news/201808/european-robotic-league-service-robot-competition">European Robotic League Service Robot Competition</a> – a sort of Champions League for robots geared to special needs in the home. This brought academics from around Europe to our laboratory for the first time in January this year. Their robots were tested in tasks like welcoming visitors to the home, turning the oven off and fetching objects for their users; and <a href="https://www.youtube.com/watch?v=fNlYWLc1cPw">a German team</a> from Koblenz University won with a robot called Lisa. </p>
<h2>Robots offshore</h2>
<p>There are comparable opportunities in the business world. Oil and gas companies are looking at the Internet of Things, for example; experimenting with wireless sensors to collect information such as temperature, pressure and corrosion levels to detect and possibly predict faults in their offshore equipment. </p>
<p>In future, robots could be alerted to problem areas by sensors to go and check the integrity of pipes and wells, and to make sure they are operating as efficiently and safely as possible. Or they could place sensors in parts of offshore equipment which are hard to reach, or help to calibrate them or replace their batteries. The likes of the <a href="https://orcahub.org">ORCA Hub</a>, a £36m project led by the <a href="https://www.edinburgh-robotics.org">Edinburgh Centre for Robotics</a>, bringing together leading experts and over 30 industry partners, is developing such systems. The aim is to reduce the costs and the risks of humans working in remote hazardous locations. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/250211/original/file-20181212-76971-1804z4x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/250211/original/file-20181212-76971-1804z4x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/250211/original/file-20181212-76971-1804z4x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=506&fit=crop&dpr=1 600w, https://images.theconversation.com/files/250211/original/file-20181212-76971-1804z4x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=506&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/250211/original/file-20181212-76971-1804z4x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=506&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/250211/original/file-20181212-76971-1804z4x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=636&fit=crop&dpr=1 754w, https://images.theconversation.com/files/250211/original/file-20181212-76971-1804z4x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=636&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/250211/original/file-20181212-76971-1804z4x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=636&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">ORCA tests a drone robot.</span>
<span class="attribution"><span class="source">ORCA</span></span>
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<p>Working underwater is particularly challenging, since radio waves don’t move well under the sea. Underwater autonomous vehicles and sensors usually communicate using acoustic waves, which are many times slower (1,500 metres a second vs 300m metres a second for radio waves). Acoustic communication devices are also much more expensive than those used above the water. </p>
<p><a href="https://research.ncl.ac.uk/usmart/">This academic project</a> is developing a new generation of low-cost acoustic communication devices, and trying to make underwater sensor networks more efficient. It should help sensors and underwater autonomous vehicles to do more together in future – repair and maintenance work similar to what is already possible above the water, plus other benefits such as helping vehicles to communicate with one another over longer distances and tracking their location. </p>
<p>Beyond oil and gas, there is similar potential in sector after sector. There are equivalents in nuclear power, for instance, and in cleaning and maintaining the likes of bridges and buildings. My colleagues and I <a href="https://journals.sagepub.com/doi/pdf/10.1177/1729881418759424">are also</a> looking at possibilities in areas such as farming, manufacturing, logistics and waste. </p>
<p>First, however, the research sectors around the Internet of Things and robotics need to properly share their knowledge and expertise. They are often isolated from one another in different academic fields. There needs to be more effort to create a joint community, such as the dedicated workshops for such collaboration that we organised at the <a href="http://iotrobotics.eps.hw.ac.uk/erf/program.html">European Robotics Forum</a> and the <a href="https://sites.grenadine.co/sites/iot/en/iot-week-2017/participants/95">IoT Week</a> in 2017. </p>
<p>To the same end, industry and universities need to look at setting up joint research projects. It is particularly important to address safety and security issues – hackers taking control of a robot and using it to spy or cause damage, for example. Such issues could make customers wary and ruin a market opportunity. </p>
<p>We also need systems that can work together, rather than in isolated applications. That way, new and more useful services can be quickly and effectively introduced with no disruption to existing ones. If we can solve such problems and unite robotics and the Internet of Things, it genuinely has the potential to change the world.</p><img src="https://counter.theconversation.com/content/108307/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mauro Dragone receives funding from EPSRC projects USMART and ORCA Hub. </span></em></p>From offshore oil and gas to the homes of people with disabilities, this is emerging as one of the most exciting areas of tech.Mauro Dragone, Assistant Professor, Cognitive Robotics, Multiagent systems, Internet of Things, Heriot-Watt UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1012772018-09-10T11:36:50Z2018-09-10T11:36:50ZPeople with disabilities bear the brunt of turf wars between conventional and online taxis<figure><img src="https://images.theconversation.com/files/233666/original/file-20180827-76003-143k1a7.jpg?ixlib=rb-1.1.0&rect=22%2C3%2C2453%2C1644&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">In an attempt to secure their market, conventional taxis enforce "red zones" – areas where online taxi drivers are barred from picking up passengers. This makes it difficult of people with disabilities to access transportation options.</span> <span class="attribution"><span class="source">www.shutterstock.com</span></span></figcaption></figure><p>It was 8.45am when the Prambanan Express train from Surakarta arrived at Lempuyangan Station, Yogyakarta. My wife and I stepped out from the station and walked hurriedly to a spot under an overpass, 100 metres east of the station, where we could usually order an online taxi. </p>
<p>But after placing the order and being assigned a driver, I received a call from the driver asking us to walk north to a pickup spot across the railroad tracks. I was vexed that this was further away from the station. The spot where we were waiting was already some distance from the station. Now we must walk further. </p>
<p>But just as we stepped on the rails, the warning bell rang, a sign that a train was about to come through. We panicked and, as we turned back, a hard object hit me on the head. It was the wooden crossing barrier, which I hadn’t noticed, and it also struck my wife on her shoulder.</p>
<p>This is just one of the many disadvantages of trying to use ride-hailing apps at Lempuyangan Station. Those of us with visual impairments already face difficulties when we have to cross the tracks at night; imagine how much more difficult it is for those who have physical disabilities. </p>
<p>Instead of being a cheaper and safer transport option, getting an online taxi can actually be dangerous for people with disabilities in locations like Lempuyangan, where a so-called “red zone” is in force.</p>
<h2>The red zone</h2>
<p>Ride-hailing apps such as Uber, Gojek and Grab have disrupted the market for traditional taxi services in Indonesia. In an attempt to secure their market, conventional taxis enforce “red zones” – areas where online taxi drivers are barred from picking up passengers. </p>
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Baca juga:
<a href="https://theconversation.com/uber-and-gojek-just-the-start-of-disruptive-innovation-in-indonesia-43644">Uber and Gojek just the start of disruptive innovation in Indonesia</a>
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<p>These red zones have no legal basis. They are defined simply by an understanding between conventional and online taxi drivers. </p>
<p>Conventional taxi drivers enforce these agreements, often using physical violence and intimidating online taxi drivers. Last June <a href="https://regional.kompas.com/read/2017/06/21/10541821/ini.zona.merah.taksi.online.di.yogyakarta">a group of conventional taxi drivers harassed and stripped an online taxi driver</a> accused of picking up passengers in the “red zone” of Adisutjipto Airport in Yogyakarta. </p>
<p>There are many such zones in Yogyakarta, such as at the Lempuyangan and Tugu train stations, Adisutjipto Airport, Giwangan and Jombor bus terminals, the Janti overpass, Gamping Market, the Dongkelan intersection and Sardjito Hospital. </p>
<p>Online taxi drivers can go into these places only to drop off passengers, not pick them up, according to Muhtar Anshori, general chairman of the Jogjakarta Online Driver Community (PPOJ), as <a href="https://regional.kompas.com/read/2017/06/21/10541821/ini.zona.merah.taksi.online.di.yogyakarta">quoted by Kompas.com</a> on June 21.</p>
<p>These red zones are different from official red zones in force in some places based on government regulations, where officials prohibit unlicensed means of transportation. For example, the transportation department has a regulation in place prohibiting all means of transport other than buses from entering bus terminals, including conventional taxis. </p>
<h2>Impact on people with disabilities</h2>
<p>So are these illegal arrangements detrimental to online taxi drivers? In my opinion, no. An online taxi driver, when receiving an order in a red zone, can arrange with the passenger to meet at a secure pickup place outside the “prohibited” zone. </p>
<p>Passengers who need cheaper transportation usually do not mind walking more than 100 metres outside the red zone. That is why they adhere to the red zone agreement.</p>
<p>But few people realise that this red zone arrangement disadvantages people with disabilities. On the one hand, people with disabilities need cheaper, safer and more convenient transportation options. </p>
<p>Online taxis can meet this need. Their app-based nature means a person with a disability does not have to go far outdoors to hail a taxi. </p>
<p>Online taxis are also safer because the identity of the driver and the vehicle number are recorded. In addition, online taxi rates are much cheaper, standardised and do not have to be negotiated. </p>
<p>These things benefit people with disabilities, whose mobility needs usually come at a higher cost. </p>
<p>A red zone arrangement harms those interests. For those who have mobility difficulties, walking to an agreed point outside the red zone is not possible when the physical environment outside stations, terminals, airports, markets and hospitals is inaccessible. Railroad tracks, uneven pavements, stairways, motor vehicle traffic and unintended lighting at night are major obstacles to the mobility of people with disabilities.</p>
<p>The party most disadvantaged by a red zone arrangement is neither the online taxi drivers nor the conventional taxi drivers. People with disabilities are most affected by this illegal scheme. It is therefore incumbent on the state to protect their interests by being more accountable for providing cheaper, safer, more convenient and accessible transportation options.</p><img src="https://counter.theconversation.com/content/101277/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Suharto Alfathi is affiliated with SIGAB (Sasana Inklusi dan Gerakan Advokasi Difabel) Indonesia, a non-governmental organisation that advocates for social inclusion and disabilities rights. </span></em></p>Instead of being cheaper and safer, getting an online taxi can actually be dangerous for people with disabilities where a so-called “red zone” is in force.Suharto Alfathi, PhD Candidate at Griffith University School of Human Services and Social Work, Griffith UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/978512018-06-11T20:36:57Z2018-06-11T20:36:57ZFive years on, NDIS is getting young people out of aged care, but all too slowly<figure><img src="https://images.theconversation.com/files/222090/original/file-20180607-137306-1u9bq7o.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4462%2C2416&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Through the NDIS, Kirby Littlely has been able to leave the nursing home where she stayed after a series of strokes.</span> <span class="attribution"><span class="source">NDIS/Summer Foundation</span></span></figcaption></figure><p>In July this year, the <a href="https://www.ndis.gov.au/about-us/what-ndis.html">National Disability Insurance Scheme</a> marks its fifth anniversary since <a href="https://www.ndis.gov.au/about-us/our-sites">starting at four trial sites</a>. The latest Summer Foundation <a href="https://www.summerfoundation.org.au/resources/ndis-report-card-june-2018/">NDIS Report Card</a> shows a 5% reduction in the number of young people entering aged care.</p>
<p>While this is a step in the right direction, it is a disappointingly small one. The number of young people living in aged care has remained just above 6,000 for the past 10 years. A 5% reduction in admissions in the past five years is barely scratching the surface of the total numbers still living in aged care.</p>
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Read more:
<a href="https://theconversation.com/nursing-homes-are-no-place-for-young-people-with-disabilities-43847">Nursing homes are no place for young people with disabilities</a>
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<p>One explanation for the stubbornly high number of young people in residential aged care is that over half of the 2,000 people who have an NDIS plan are relatively new to the scheme, having entered between September 2017 and March 2018. This was a result of the “<a href="https://www.summerfoundation.org.au/wp-content/uploads/2017/12/cfc-newsletter-dec2017-web.pdf">facilitated access</a>” program, a concerted effort by the NDIS to link young people in aged care to the scheme. Dedicated NDIS staff are charged with signing up young people with disabilities living in nursing homes.</p>
<p>Through this program 1,109 young people in aged care have become NDIS participants. That’s 31% more than the 849 young people in aged care who joined between 2013 and 2017. The NDIS deserves credit for this marked turnaround.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=195&fit=crop&dpr=1 600w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=195&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=195&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=246&fit=crop&dpr=1 754w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=246&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=246&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 numbers of young people in residential aged care (YPIRAC) who are signing up to the NDIS have picked up since September 2017, but are still below target.</span>
<span class="attribution"><a class="source" href="https://www.summerfoundation.org.au/resources/ndis-report-card-june-2018/">NDIS Report Card June 2018, Summer Foundation</a>, <span class="license">Author provided</span></span>
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<h2>So why is progress so slow?</h2>
<p>Finding young people living in aged care and linking them to the NDIS is a vital first step to creating positive and real change in their lives. However, a lot more work needs to be done to ensure that the person‘s NDIS plan is adequate and that they have the capacity and the necessary housing and supports in place to exit residential aged care. A closer look at the detail of the plans allocated to younger people with disabilities in residential aged care suggests inadequate plans may be part of the problem.</p>
<p><a href="https://www.aph.gov.au/Parliamentary_Business/Senate_Estimates/ca">Senate estimates data</a> (QON 185) show that the median plan value for young people in aged care is $104,563. This may help improve their quality of life, but when we break down this value we see that $77,539 could be taken up covering aged care costs alone. That leaves only $31,990 for assessments, support, home modifications and other essential supports needed to move out of residential aged care.</p>
<p>A significant factor forcing young people with high physical support into residential aged care is the lack of suitable, accessible and affordable housing. <a href="https://www.aph.gov.au/Parliamentary_Business/Senate_Estimates/ca">Senate estimates</a> (QON 194) revealed that only 23 or 1.5% of NDIS participants living in residential aged care have funding for housing in their plans. Many may be unable to leave because they have nowhere else to live.</p>
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Read more:
<a href="https://theconversation.com/ndis-needs-the-market-to-help-make-up-at-least-60-shortfall-in-specialist-disability-housing-93479">NDIS needs the market to help make up at least 60% shortfall in specialist disability housing</a>
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<p>The <a href="https://www.summerfoundation.org.au/resources/ndis-report-card-june-2018/">report card</a> also shows that NDIS participants living in aged care have difficulty implementing their plans. The data revealed that only 51.3% of these participants were drawing on the funding in their plans. So almost half have funding they are not using. </p>
<p>This may reflect the lack of appropriately skilled support co-ordinators to help with plan implementation, workforce shortages and inadequate housing options. It may also be a result of institutionalisation, where a person loses the capacity to see a future for themselves living in the community.</p>
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<figcaption><span class="caption">There are still more than 6,000 young people living in aged care facilities because of a lack of affordable and appropriate housing.</span></figcaption>
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<h2>What more needs to be done?</h2>
<p>Overall, the NDIS has shown that a focused effort to connect people with the scheme is required and will yield results. Much more work, however, is needed to ensure NDIS plans are appropriately designed to support people to live in the community.</p>
<p>Moving out of residential aged care can be a complex and intensive process. While the NDIS has a very important role, so do the health system and other parts of government and society.</p>
<p>If we are to resolve the issues of young people in nursing homes, we need to recognise that access to the NDIS is only part of the solution. Critical enablers are:</p>
<ul>
<li>an effective plan that includes adequate support for implementation</li>
<li>community housing and social infrastructure that are accessible and inclusive of the needs of people with disabilities who have complex needs </li>
<li>a much larger and flexible workforce with the necessary attitudes and skills to work effectively with people who have high support needs </li>
<li>information and support to build the capacity of individuals to live in the community</li>
<li>hospital staff who are resourced to co-ordinate community supports to enable smooth patient discharge that avoids entry into residential aged care</li>
<li>community health services with the capacity to meet complex health-care needs including high-quality preventive health care and slow-stream rehabilitation.</li>
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Read more:
<a href="https://theconversation.com/how-the-ndis-is-using-the-market-to-create-housing-for-people-with-disability-83144">How the NDIS is using the market to create housing for people with disability</a>
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<img src="https://counter.theconversation.com/content/97851/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>George Taleporos is the Policy Manager at the Summer Foundation Ltd.</span></em></p>The NDIS has started to reduce the admissions of young people with disabilities to aged care facilities, but more than 6,000 are still waiting for more suitable accommodation.George Taleporos, Adjunct Senior Research Fellow, Living with Disability Research Centre, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/971102018-06-11T14:33:43Z2018-06-11T14:33:43ZToilet talk: why public loos just aren’t good enough<figure><img src="https://images.theconversation.com/files/222180/original/file-20180607-137312-1nu6cwt.jpg?ixlib=rb-1.1.0&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>We can probably all think of a time we’ve desperately searched for the closest loos – a situation made all the more challenging by the ongoing <a href="http://www.bbc.co.uk/news/uk-36405414">closures of public toilets</a>. But on top of the lack of funding for toilets, a one-size-fits-all model of toilet provision means that, for some disabled, trans and chronically ill people, trips out of the house remain a fantasy, or a constant source of anxiety.</p>
<p>During our <a href="https://aroundthetoilet.wordpress.com/around-the-toilet-report/">three-year research project</a> about what makes a safe and accessible toilet space, we have been told about plans aborted and trips ruined because suitable toilet facilities weren’t available. The <a href="http://aroundthetoilet.com/">Around the Toilet project</a> explores how a lack of access to toilets that are functional, easy to locate and safe restricts the journeys people are able to make – limiting access to the wider world.</p>
<p>One participant, Nicky, who needs urgent toilet access due to a bowel condition, said that she is scared about leaving the house in case she gets somewhere and there isn’t a toilet. Similarly, for Gill, who has irritable bowel syndrome (IBS), government initiatives encouraging people to get out of the house and do more exercise feel useless without suitable toilet access:</p>
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<p>The government bangs on about exercise [but] going to the park for people like me is a no go, however beautiful it is and however good it is to exercise. If there are no toilets, forget it. </p>
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<h2>Toilets on the go</h2>
<p>Our research also shows that travelling on public transport was particularly difficult for some people – as Nicky explains:</p>
<blockquote>
<p>I used to avoid going on buses because there aren’t any toilets. The very fact that you’re on something that doesn’t have a toilet can be quite stressful. Same with trams. Trains do have toilets but they’re not very good.</p>
</blockquote>
<p>We found that train toilets can cause particular problems. For <a href="https://www.theguardian.com/society/2017/jan/02/paralympian-anne-wafula-strike-wet-herself-train-no-accessible-toilet">some disabled people they were physically inaccessible</a>, for others – including some trans people we spoke to – the conspicuous positioning of toilets and the unpredictable timing of the sliding door rendered the toilets unusable.</p>
<p>One trans woman described how she felt unable to walk along the carriage to the toilets “because they’re quite exposed – and you [can] hear people laughing outside and [I’m wondering], are they laughing at me?”</p>
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<p>Public transport wasn’t the only problem for trans and non-binary people – many shared with us stories of transphobic hostility and violence in toilets. One trans woman explained that when she felt toilets would be unsafe, she was unable to leave the security of her house, because the toilet “extends to everywhere”. She described how toilets where her identity wasn’t questioned allowed her to take necessary, everyday journeys away from home.</p>
<h2>More than an inconvenience</h2>
<p>Our <a href="https://aroundthetoilet.wordpress.com/around-the-toilet-report/">recent report</a> reveals how many people plan their journeys around toilets, and that “accessible” toilets are, in fact, inaccessible to many disabled people. </p>
<p>Several participants, who require a hoist and changing bench to use the toilet (sometimes known as <a href="http://www.changing-places.org/the_campaign/what_are_changing_places_toilets_.aspx">Changing Places toilets</a>), discussed only visiting venues with these types of toilets, or not leaving home at all. One Changing Places user pointed out that when these toilets are available, they’re usually in “family friendly” venues such as zoos and theme parks, but rarely in offices, pubs and restaurants.</p>
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<img alt="" src="https://images.theconversation.com/files/222182/original/file-20180607-137285-1ogeo4m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/222182/original/file-20180607-137285-1ogeo4m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/222182/original/file-20180607-137285-1ogeo4m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/222182/original/file-20180607-137285-1ogeo4m.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/222182/original/file-20180607-137285-1ogeo4m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/222182/original/file-20180607-137285-1ogeo4m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/222182/original/file-20180607-137285-1ogeo4m.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">More than 1800 council run public toilets have closed in the last decade.</span>
<span class="attribution"><span class="source">Pexels</span></span>
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<p>Two mothers of teenage Changing Places users spoke of days out, family meals and holidays that were abandoned, stressful or undignified for their children. One described laying her daughter on an airport floor when no changing bench was available, and creating walls of suitcases to provide some privacy. Another said that taking a holiday was “something that actually fills you with dread” due to the lack of suitable toilets. </p>
<p>We were told about a wheelchair user who was unable to reach the toilet on a plane, so had to urinate under a blanket into a bowl which was then carried away by an air hostess. Many participants also spoke about not drinking or eating all day and “holding on” – this sometimes meant not using the toilet for up to 18 hours a day. </p>
<h2>Everyday exclusions</h2>
<p>Although we all visit the loo daily, toilets remain largely undervalued and trivialised spaces – something that is not often talked about. They are rarely prioritised in local authority budgets and often given to the least experienced architect to deal with at the end of the design process. </p>
<p>Yet, as our report shows, a lack of access to adequate toilets can result in an inability to leave the house. It stops people from going about their lives, from feeling welcome and valued, and can even force people to leave – or lose – their jobs. </p>
<p>Everyone needs access to a toilet, yet for many people inadequate toilet provision is their daily reality. Our <a href="https://aroundthetoilet.wordpress.com/around-the-toilet-report/">research demonstrates</a> we need to rethink our approach to toilets – and increase and diversify our provision so that everyone is considered.</p>
<p><em>Some names have been changed.</em></p><img src="https://counter.theconversation.com/content/97110/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The Around the Toilet project was funded by the AHRC Connected Communities programme.</span></em></p>What it’s like trying to use a public loo when they aren’t designed for you.Charlotte Jones, Postdoctoral research fellow in the Usher Institute of Population Health Sciences and Informatics, The University of EdinburghJen Slater, Reader Disability Studies and Education, Sheffield Hallam UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/934792018-03-20T19:05:22Z2018-03-20T19:05:22ZNDIS needs the market to help make up at least 60% shortfall in specialist disability housing<p>Funding for Specialist Disability Accommodation (<a href="https://www.ndis.gov.au/document/specialist-disability-accommodation-fact">SDA</a>) under the National Disability Insurance Scheme (<a href="https://www.ndis.gov.au/about-us/what-ndis">NDIS</a>) is expected to support 28,000 people, 6% of all NDIS participants. However, the NDIS has provided limited information about the demand for this specialist housing. Now a newly published <a href="https://www.summerfoundation.org.au/resources/sda-market-insights/">study</a> has found the existing supply of SDA needs to grow by 60% to house the 28,000 people the NDIS expects to fund.</p>
<p>The report identified another 33,200 people with very high support needs who “may require SDA on top of the 17,500 already in this form of housing. Of these 33,200 people, 6,200 people are under 64 residing in aged care.” </p>
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Read more:
<a href="https://theconversation.com/nursing-homes-are-no-place-for-young-people-with-disabilities-43847">Nursing homes are no place for young people with disabilities</a>
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<p>These are among the insights revealed in the government-funded <a href="https://www.summerfoundation.org.au/resources/sda-market-insights/">report</a> by the <a href="https://www.summerfoundation.org.au/what-we-do/">Summer Foundation</a>, the Australian Housing and Urban Research Institute (<a href="https://www.ahuri.edu.au/home">AHURI</a>) and <a href="https://www.sgsep.com.au/about">SGS Economics & Planning</a>. </p>
<p>It is important to understand the nature and scale of demand, given that SDA is expected to account for <a href="https://theconversation.com/how-the-ndis-is-using-the-market-to-create-housing-for-people-with-disability-83144">NDIS spending of A$700 million a year</a> when the scheme is fully implemented. The transformation from grants-based funding to a market-based system in which people with disabilities control their own funding is predicted to create a <a href="https://theconversation.com/how-the-ndis-is-using-the-market-to-create-housing-for-people-with-disability-83144">A$5 billion disability housing market</a> over the next five years.</p>
<h2>What is SDA?</h2>
<p><a href="https://www.ndis.gov.au/specialist-disability-accommodation">Specialist Disability Accommodation</a> ensures the housing requirements of people with extreme functional impairment or very high support needs are delivered.</p>
<p><a href="https://www.ndis.gov.au/SDA-pricing-payments">SDA payments</a> cover a wide range of housing options, depending on the individual’s needs. By including the payment in the individual’s support plan, the person with disability should have choice and control over where they live and who they live with. </p>
<p>Of course, this depends on <a href="https://theconversation.com/how-the-ndis-is-using-the-market-to-create-housing-for-people-with-disability-83144">a fully functioning, mature and competitive market</a> in which providers compete to provide housing to NDIS participants. SDA payment rates have been set to cover the cost of capital and to incentivise a new market.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-the-ndis-is-using-the-market-to-create-housing-for-people-with-disability-83144">How the NDIS is using the market to create housing for people with disability</a>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/PxaAhijD7zY?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Technology helps Jono Bredin live a better and more independent life in specialist accommodation.</span></figcaption>
</figure>
<h2>What are the key findings?</h2>
<p>Comparing existing SDA places with the NDIS’s current projected demand across the country, the study found the supply of such housing needs to grow by 60%. The largest required rate of increase, 120%, is in the ACT. New South Wales requires the most new SDA places (3,290).</p>
<p>The study found the greatest demand in locations with the highest population growth. As an illustration, in southwestern Sydney, the NDIS is expected to increase the current 137 SDA places to 492. That’s 360% growth in disability housing in the area.</p>
<p>The results highlight the differences in people living in current SDA (mainly government-funded group homes) and the population representing the potential demand for SDA. </p>
<p>People in the potential demand group have a far younger age profile. More than two-thirds are under 45 years and half of them are under 34. People now living in SDA have a median age of 42.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/nursing-homes-are-no-place-for-young-people-with-disabilities-43847">Nursing homes are no place for young people with disabilities</a>
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<p>The potential demand group also has a very different disability profile. Those living in SDA are predominantly people with intellectual disability. The potential demand group still has a significant proportion of people with intellectual disability, but physical and neurological disabilities become more prevalent. This profile suggests the future SDA cohort will need much more highly accessible housing.</p>
<p>The qualitative component of the study highlights that people who are eligible for SDA have aspirations for housing that is very different from where they live now. Their housing preferences are unlikely to be met by the dominant group home model – most want to live on their own or with friends in a share-house arrangement. </p>
<p>This highlights the need for apartment-style living where people can live independently in their own home with easy access to on-site support. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ndis-housing-rules-for-people-with-a-disability-could-be-life-changing-74692">NDIS housing rules for people with a disability could be life-changing</a>
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<p><a href="https://www.ndis.gov.au/SDA-pricing-payments">NDIS pricing</a> encourages these developments. It will provide more than A$107,000 a year for a two-bedroom apartment in addition to the NDIS participant’s rent contribution.</p>
<h2>What do the findings mean for policy?</h2>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/210959/original/file-20180319-104645-11ff89l.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/210959/original/file-20180319-104645-11ff89l.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/210959/original/file-20180319-104645-11ff89l.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=423&fit=crop&dpr=1 600w, https://images.theconversation.com/files/210959/original/file-20180319-104645-11ff89l.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=423&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/210959/original/file-20180319-104645-11ff89l.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=423&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/210959/original/file-20180319-104645-11ff89l.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=532&fit=crop&dpr=1 754w, https://images.theconversation.com/files/210959/original/file-20180319-104645-11ff89l.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=532&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/210959/original/file-20180319-104645-11ff89l.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=532&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 report highlights the potential level of demand in the market for specialist disability accommodation.</span>
<span class="attribution"><a class="source" href="https://www.summerfoundation.org.au/resources/sda-market-insights/">Summer Foundation</a></span>
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<p>This study provides much-needed insights into the SDA market, which will help potential providers better understand future demand. </p>
<p>However, the study’s predictions of the amount of new SDA housing to be constructed are likely to be underestimates. The study’s underlying assumption is that the current stock will continue to provide housing. In practice, much of the existing SDA stock will need to be redeveloped or replaced to be competitive in a market-based system. </p>
<p>The decommissioning of old stock will also help Australia to meet its obligations under <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-19-living-independently-and-being-included-in-the-community.html">Article 19 of the UN Convention on the Rights of Disabled Persons</a>. This states:</p>
<blockquote>
<p>Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.</p>
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<p>Group home living arrangements are inconsistent with this because they force people with disabilities to live with others who, in most cases, they have not chosen. </p>
<p>Recent <a href="https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Violence_abuse_neglect/Report">government inquiries</a> have also shown that group homes are rife with abuse and neglect. Last year over 100 academics wrote an <a href="http://www.documentcloud.org/documents/3725778-Open-Letter-Royal-Commission-Into-Disability-Abuse.html#document/p1">open letter</a> to the prime minister <a href="http://www.abc.net.au/news/2017-05-17/psychotropic-medications-in-group-homes-open-letter/8513664">in support of a royal commission</a> into the abuse, with some <a href="http://www.abc.net.au/news/2017-05-18/group-homes-for-people-with-disability-must-be-phased-out/8534506">calling for group homes to be phased out</a>.</p>
<p>When the NDIS is fully rolled out and participants have the freedom to move out of outdated and segregated group homes, they will be seeking a very different type of housing arrangement than they were forced to endure before the NDIS. </p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/veL7WaQA2xc?wmode=transparent&start=4" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Ben Parkinson demonstrates the apartment features that finally enable him to live independently.</span></figcaption>
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<p>This report shows that developers have a significant opportunity to capitalise on the unmet demand. They can achieve sizeable returns while also having a positive impact on the lives of people with disabilities. </p>
<h2>How was the study conducted?</h2>
<p>In the absence of official NDIS data, the Summer Foundation study analysed data from state-funded disability service systems. The Australian Institute of Health and Welfare (AIHW) compiled this data in the <a href="https://www.aihw.gov.au/about-our-data/our-data-collections/disability-services-national-minimum-data-set">Disability Services National Minimum Data Set</a>. The analysis used data from before the transition of most areas to the NDIS, providing a comprehensive snapshot of people using state-funded disability services.</p>
<p>Likely shortfalls in SDA supply were modelled by distributing the expected supply of 28,000 NDIS-funded accommodation places and comparing that to current populations. In addition to identifying areas with major shortfalls, the analysis modelled potential demand from existing service users with very high support needs who were living in other settings, mainly the family home with ageing parents. This included young people living in nursing homes. </p>
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<p><em>The author wishes to acknowledge the contribution of Robin Zakharov, senior policy adviser at the Summer Foundation.</em></p><img src="https://counter.theconversation.com/content/93479/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>George Taleporos is the Policy Manager at the Summer Foundation Ltd.</span></em></p>The NDIS is allowing for Specialist Disability Accommodation for 28,000 people, with 17,500 already in such housing. The potential demand for this life-changing supported housing is even greater.George Taleporos, Adjunct Senior Research Fellow, Living with Disability Research Centre, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.