tag:theconversation.com,2011:/us/topics/ableism-36773/articlesAbleism – The Conversation2024-02-13T19:31:34Ztag:theconversation.com,2011:article/2220542024-02-13T19:31:34Z2024-02-13T19:31:34ZShowing love on Valentine’s Day by embracing disability<figure><img src="https://images.theconversation.com/files/574603/original/file-20240209-16-r7k1o3.jpg?ixlib=rb-1.1.0&rect=110%2C0%2C7238%2C4912&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Stereotypes often mean people with disabilities are told to wait and delay their engagement in any romantic or sexual experiences.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Valentine’s Day is a time when love and intimacy are celebrated with fervor. Yet, the challenges some face in this regard are not often recognized. In particular, people with disabilities face discrimination and obstacles when seeking love, affection and sexual fulfillment.</p>
<p>People with disabilities often contend with persistent stereotypes when it comes to their love lives. A lack of comprehensive and accessible sex education also leaves people with disabilities ill-equipped to navigate the complexities of relationships and intimacy.</p>
<p>At the University of Calgary’s <a href="https://www.disabilitysexualitylab.com/">Disability and Sexuality Lab</a>, we are working to address these challenges. Our team has undertaken a comprehensive series of interviews with individuals living with disabilities, delving into their personal journeys with love, romance and sexuality. </p>
<p>These conversations reveal the complex realities they face in their quest for intimate connections and underscore the urgent need for greater awareness, and inclusivity within the intersection of disability and sexuality.</p>
<h2>Stereotypes about disability and sexuality</h2>
<p>Individuals with disabilities frequently confront a <a href="https://theconversation.com/people-with-disability-face-barriers-to-sexual-and-reproductive-health-care-new-recommendations-are-only-the-start-206746">multitude of stereotypes</a> that limit their opportunities to form intimate relationships and have sex. These perceptions can deeply affect their experiences and how society treats the topic of disability and sexuality.</p>
<p>Initially, there’s a <a href="https://doi.org/10.3109/09638280903419277">pervasive stereotype</a> that portrays disabled people as lacking sexual desires or being incapable of making good decisions regarding their intimate lives. This view unfairly categorizes people with disability as a “danger” to the community, fostering unnecessary fear and discrimination. Such a narrative not only marginalizes their experiences but also unjustly strips them of their rights to make personal decisions about their bodies and relationships.</p>
<p>Simultaneously, they are subjected to <a href="https://doi.org/10.1177/1363460716688680">infantilization and de-sexualization</a>. This process where their capacity for adult relationships and sexuality is either ignored or denied, undermines their autonomy and contributes to a broader societal narrative. It fails to recognize disabled people as fully rounded individuals with the same spectrum of desires and needs for intimacy as anyone else.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man and woman communicate using sign language." src="https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/575093/original/file-20240212-22-lcuw8a.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Stereotypes and perceptions can deeply affect how broader society views disability and sexuality.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Being told to wait</h2>
<p>Infantilization often means people with disabilities are told to wait and delay their engagement in any romantic or sexual experiences.</p>
<p><a href="https://www.taylorfrancis.com/chapters/edit/10.4324/9781003163329-57/intersection-sexuality-intellectual-disabilities-alan-santinele-martino">Our comprehensive interviews with 46 adults who have intellectual disabilities</a> in Ontario highlighted how participants were often advised that they should defer sexual activity until their late 30s, 40s, and in some cases, even their 50s. </p>
<p>This guidance, ostensibly for their protection, underscores a broader societal issue where people with disabilities are not afforded the same autonomy to explore their sexuality compared to those without disabilities.</p>
<p>For instance, Randy, a 39-year-old man with a mental disability, told us he was advised not to pursue intimate relationships. “My mother told me I am not ready,” he said. Often, people with disabilities, especially those with intellectual disabilities, are told to wait.</p>
<p>This represents further the perceived notion that <a href="https://doi.org/10.1080/10714413.2012.687241">people with disabilities are not knowledgeable</a> about their own sexuality and intimate lives. For instance <a href="https://doi.org/10.1007/s12119-023-10185-w">Priscilla, a 43-year-old bisexual woman, said:</a> </p>
<blockquote>
<p>“When you have a developmental disability, people think that you don’t know what you’re talking about. Or when you say I’m bisexual or gay, whatever, they think that you don’t actually know what it means.”</p>
</blockquote>
<h2>Sex education inaccessible and inadequate</h2>
<p>In ensuring individuals are informed about their options in terms of sex, sexuality and gender, sex education is often where these conversations begin. Unfortunately sex education is often delivered in <a href="https://doi.org/10.1007/s10508-023-02755-8">inaccessible and ineffective ways</a> to people with disabilities, particularly those who are 2SLGBTQ+. This is what we found in our other research project about the intimate lives of 31 2SLGBTQ+ individuals with intellectual and/or developmental disabilities in Alberta, Canada. </p>
<p>Sex education is often delivered in ways that focus on heterosexual and cisgender experiences. <a href="https://doi.org/10.1007/s10508-023-02755-8">Aubrey, a 30-year-old queer trans man said</a>: </p>
<blockquote>
<p>“You know, for myself as a gender diverse person, I really would have benefited from that [sex education], because I hadn’t even known about that possibility until much later in my life.”</p>
</blockquote>
<p>Partly due to this lack of education, studies have shown that people with disabilities experience greater vulnerability. The <a href="https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-talks-about">rates of sexual abuse</a> are higher among disabled people compared to non-disabled people. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman sits on the lap of another woman in a wheelchair. They look at each other lovingly." src="https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/575087/original/file-20240212-30-lntkxr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Disabled 2SLGBTQ+ people often face overlapping forms of discrimination.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>2SLGBTQ+ disabled people being left behind</h2>
<p>Individuals with disabilities who are also 2SLGBTQ+ often find themselves facing multiple forms of discrimination, including ableism, homophobia and transphobia. </p>
<p>Yet, our interviews with 2SLGBTQ+ adults with developmental and/or intellectual disabilities reveal not just the barriers these individuals face but also their profound resilience and desire for love. For instance <a href="https://doi.org/10.1080/00918369.2023.2276320">Tracey, a 19-year-old gender fluid person, said</a>: </p>
<blockquote>
<p>“I just wish there were more like spaces where disabled people could also enter because you know, when you also think of like, people who are physically disabled, they can’t go out clubbing. They physically can’t, then so it’s like, there’s not many activities, there’s not many ways for us to engage in our own community.”</p>
</blockquote>
<p>Our research shows significant gaps in information and conversations about disability and romance, emphasizing the necessity for accessible education, resources and spaces. Recent 2SLGBTQ+ rights challenges, like <a href="https://theconversation.com/albertas-new-policies-are-not-only-anti-trans-they-are-anti-evidence-222579">Alberta’s parental rights policies</a>, underscore the urgency of challenging new transphobic policies. </p>
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<p>
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Read more:
<a href="https://theconversation.com/albertas-new-policies-are-not-only-anti-trans-they-are-anti-evidence-222579">Alberta's new policies are not only anti-trans, they are anti-evidence</a>
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<h2>Disabled activists push back</h2>
<p>Valentine’s Day, with its emphasis on love and connection, brings to light the importance of inclusivity. It’s a fitting moment to reflect on how everyone desires to love and be loved. The work of disabled activists like Andrew Gurza, host of the podcast <a href="http://www.andrewgurza.com/podcast">Disability after Dark</a>, and Eva Sweeney, creator of <a href="https://www.crippingupsexwitheva.com/">Cripping up Sex with Eva</a>, is particularly illuminating. They courageously open up conversations about disability and sexuality, challenging norms and pushing the boundaries of what’s often considered a taboo subject.</p>
<p>In a simple yet profound expression, a young man with Down Syndrome shared his insight, saying, <a href="https://hollandbloorview.ca/sites/default/files/2021-04/Presentation%20Slides-%20Talk%203%20Speaker%201%20Dr.%20Alan%20Martino_0.pdf">“love is natural, we all love.”</a> This statement serves as a powerful reminder, especially on Valentine’s Day — a time often saturated with conversations about sex, intimacy and romantic connections. It’s a period that underscores the significance of making sure everyone feels seen and included.</p>
<p>Their efforts highlight a critical message: The more we talk about it, the less of a taboo topic it becomes. </p>
<p><em>Eleni Moumos, an undergraduate student in Psychology minoring in Disability Studies at the University of Calgary, co-authored this article.</em></p><img src="https://counter.theconversation.com/content/222054/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alan Santinele Martino receives funding from the Canadian Institutes of Health Research.</span></em></p>Individuals with disabilities frequently confront stereotypes that limit their opportunities to form intimate relationships and have sex.Alan Santinele Martino, Assistant Professor, Community Rehabilitation and Disability Studies, University of CalgaryLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2218612024-01-30T23:08:05Z2024-01-30T23:08:05ZHere are some dos and don’ts to help tackle ableism<iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/here-are-some-dos-and-donts-to-help-tackle-ableism" width="100%" height="400"></iframe>
<p>When we met each other in Grade 11 in Alberta, we were far from the typical high school success story. Heidi has cerebral palsy and was seen as too disabled for regular schools, and Michelle was a chronic truant and an activist. </p>
<p>Soon, we became friends and made a pact to get our doctorates, which we did. Over the past three decades, we have researched, taught classes and given talks on disability and ableism. </p>
<p>Throughout the course of our careers and lived experiences, we have seen the daily ableism people living with disabilities contend with. As professors of education and disability ethics, we have put together the following list of dos and don’ts. </p>
<h2>The dos</h2>
<p><strong>1. Listen to feedback even if you’d rather not.</strong>
Giving people feedback on <a href="https://www.talilalewis.com/blog/working-definition-of-ableism-january-2022-update">ableism</a> isn’t our idea of a good time, but we’d like a society that isn’t ableist. Try to be mindful and understanding when someone tells you that your <a href="https://theconversation.com/disability-and-dignity-4-things-to-think-about-if-you-want-to-help-198993">words or actions are not helpful</a>.</p>
<p><strong>2. Listen to how people identify themselves.</strong>
Some disabled people use <a href="https://doi.org/10.1111/j.1755-618X.2001.tb00967.x">identity-first language</a>: “I am disabled.” Others might use people-first language: “I am a person with disabilities.” This is a personal and political choice. The same goes for titles. When we teach, we use Dr. Janz instead of Heidi because it is often challenging for students and colleagues to see Dr. Janz as having academic expertise.</p>
<p><strong>3. Think about how often disability is used to denote something negative or as an insult.</strong>
Here are a few we’ve heard recently: blind to it, blindspot, deaf to it, schizo, manic, lame or when talking about a person who was challenging organizational norms as “definitely autistic.” </p>
<p><strong>4. Think about how you can be more inclusive of people with disabilities.</strong>
Excluding or minimizing the experiences of disabled individuals often leads to <a href="https://doi.org/10.1377/hlthaff.2022.00520">flawed research</a>, policy and <a href="https://www.c-q-l.org/resources/articles/most-disability-professionals-are-ableist/">education</a> of future professionals. It’s essential to integrate critical work by disability scholars for ethically sound, and socially relevant research and education.</p>
<p><strong>5. Commit to fair compensation.</strong>
We can’t tell you how many times it has been assumed that Michelle should be paid but that Heidi is happy as a clam to do work for free. Disabled people deserve compensation for their work like everyone else. </p>
<p>Their costs are often far higher than those of someone who does not travel with a personal care attendant and needs to use accessible transportation and accommodation — <a href="https://www.cbc.ca/news/canada/calgary/canadian-cities-accessibility-disabilities-research-calgary-ottawa-vancouver-1.7043923">when it is available</a>. But even if they didn’t need any of these things, the assumption disabled people should work for less or for free is downright insulting.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/working-from-home-has-worked-for-people-with-disability-the-back-to-the-office-push-could-wind-back-gains-209870">Working from home has worked for people with disability. The back-to-the-office push could wind back gains</a>
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<p><strong>6. Challenge the notion that people are better off dead.</strong>
Despite the opposition of major disability rights groups in Canada and concerns expressed by <a href="https://spcommreports.ohchr.org/TMResultsBase/DownLoadPublicCommunicationFile?gId=26002">United Nations special rapporteurs on the rights of persons with disabilities</a>, Canada promised to expand Medical Assistance in Dying (MAID) to <a href="https://www.thestar.com/news/investigations/surge-in-medically-assisted-deaths-under-canada-s-maid-program-outpaces-every-other-country/article_29028f96-bc6b-11ee-8f67-03bf29ac7d34.html">people with mental health challenges</a>. </p>
<p>The expansion of MAID to include individuals with mental illness is <a href="https://www.cbc.ca/news/politics/medical-assistance-in-dying-mental-illness-delay-1.7098313">likely to be postponed</a> following more testimonies from mental health experts and advocates arguing that MAID as a solution for mental illness is problematic, especially considering the high number of people who are unhoused, living in poverty and unable to access supports including mental health and addiction treatment services. </p>
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<figcaption><span class="caption">Heidi Janz providing expert testimony on MAID and ableism to Parliament’s Standing Committee on Justice and Human Rights in November 2020.</span></figcaption>
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<p><strong>7. Understand the impact of your government’s policies on disabled people.</strong>
The UN estimates that about <a href="https://www.youtube.com/watch?v=liks62ZcMK0">9.7 million</a> people with disabilities are displaced because of conflict and war. The late associate professor of English, <a href="https://www.penguinrandomhouse.ca/books/734125/landbridge-by-y-dang-troeung/9781039008762">Y-Dang Troeung</a>, and gender, race, sexuality and social justice professor <a href="https://www.dukeupress.edu/the-right-to-maim">Jasbir Puar</a> are two scholars who examine how ableism, racism and geopolitics connect.</p>
<p><strong>8. Think about who you see as leaders and why.</strong>
Democracy is founded on representation. <a href="https://www.ctvnews.ca/canada/statcan-8-million-people-27-of-canadians-have-at-least-1-disability-1.6675303">Twenty-seven per cent of Canadians identify as having a disability</a>. Consider what government, workplaces, health care, education and the justice system would look and feel like if a commitment to dismantling ableism was a priority.</p>
<h2>The don’ts</h2>
<p><strong>1. Don’t tell disabled people you are their voice.</strong>
Watch the power tripping that comes with assuming you are a voice for a group you are not a part of, including disability. Is it that you are speaking for the voiceless? Or for people with clear voices about what needs to change — based on their lived experience and expertise — who are being ignored? Voices come in many forms — text, story, art, music, screams of frustration, love and laughter. </p>
<p>Similarly, don’t ask a disabled person to speak for all disabled people. Not all disabled people will agree with each other, just as not all individuals in any group share the same opinions. Learn to listen. </p>
<p><strong>2. Don’t ask disabled people and other structurally marginalized groups to be patient.</strong>
Consider what it is like for disabled people asking for the basics of life, such as accessible housing, education, health care and food security, to constantly be told to be patient while others decide what they think is best for you. It’s important to clarify that the issue does not lie with frontline staff, who are often overstretched and underpaid, but rather with the fair distribution of public resources to include disabled people.</p>
<p><strong>3. Don’t assume disabled people aspire to be your inspiration.</strong>
Telling someone you don’t know how they do it or that you just wouldn’t cope if disabled might seem harmless, but consider how such comments might sound to a disabled person. How should a person, who might view their life as pretty enjoyable, respond to a comment that assumes it is actually pretty awful? </p>
<p><strong>4. Don’t assume you know what a person’s quality of life is.</strong>
Dr. Janz, for example, always needs an advocate with her when in the hospital because, too often, those paid to care for her assume she wants to be a DNR (do not resuscitate). <a href="https://www.telegraph.co.uk/news/2021/06/09/patients-mental-illness-learning-disabilities-given-do-not-resuscitate/">Ableism is life-threatening</a>.</p>
<p><strong>5. Don’t displace your discomfort onto disabled people.</strong>
It is okay to be uncomfortable when you can’t understand someone’s speech, or you don’t understand why they are twirling or rocking back and forth. What isn’t okay is to blame disabled people for your discomfort. </p>
<p>Ableism goes beyond individual fear or prejudice. It influences who we see as having a life worth living and who is seen as a burden. That, in turn, impacts our practices and policies. We all have a role to play in challenging ableism, which may sometimes leave us feeling awkward or unsure if we’re doing and saying the right things. But, to our knowledge being awkward isn’t deadly. Ableism too often is.</p><img src="https://counter.theconversation.com/content/221861/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>People with disabilities contend with daily challenges and ableism. Here are some dos and don'ts to help you be more mindful of those living with a disability.Michelle Stack, Associate Professor, Department of Educational Studies, University of British ColumbiaHeidi L. Janz, Associate Adjunct Professor of Disability Ethics, John Dossetor Health Ethics Centre, University of AlbertaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2217402024-01-24T05:21:08Z2024-01-24T05:21:08ZTravellers with disability often face discrimination. What should change and how to complain<figure><img src="https://images.theconversation.com/files/571006/original/file-20240123-19-w4r6v9.jpg?ixlib=rb-1.1.0&rect=15%2C0%2C5251%2C3506&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/rear-view-man-on-wheelchair-airport-2253945023">Shutterstock/Halfpoint</a></span></figcaption></figure><p>Australia’s former disability discrimination commissioner, Graeme Innes, has settled his dispute <a href="https://www.abc.net.au/news/2024-01-23/adelaide-airport-graeme-innes-disability-discrimination-dispute/103375068">with Adelaide Airport</a>. His complaint to the Human Rights Commission was lodged after being denied access to a body scanner with his assistance dog in <a href="https://graemeinnes.com/2022/05/17/airport-discrimination-dash-i-am-angry-as-hell-and-im-not-going-to-take-it-anymore/">May 2022</a>. </p>
<p>Unfortunately, Innes’ experience will resonate widely with Australia’s <a href="https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability">4.4 million people with disability</a>. </p>
<p>“People with disability know how challenging air travel can be, and that experience needs to be more inclusive,” said Innes, who was disability discrimination commissioner for nine years and is on the board of the <a href="https://www.ndis.gov.au/about-us/governance/board/board-profiles">National Disability Insurance Agency</a>.</p>
<p>Experiences like Innes’ have been widely <a href="https://www.theguardian.com/australia-news/2023/feb/03/australias-airlines-and-airports-urged-to-improve-treatment-of-travellers-with-disabilities">reported</a> and have happened to <a href="https://www.smh.com.au/national/graeme-innes-fights-to-change-how-disabled-people-are-treated-when-they-fly-20220516-p5alqs.html">prominent Australians with disability</a>. The everyday experience of air travel is likely even more shocking. Change is happening, but it is moving slowly.</p>
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Read more:
<a href="https://theconversation.com/what-does-a-building-need-to-call-itself-accessible-and-is-that-enough-217278">What does a building need to call itself 'accessible' – and is that enough?</a>
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<h2>Airport and airline ableism</h2>
<p>The Human Rights Commission received more than <a href="https://www.infrastructure.gov.au/sites/default/files/documents/awptor2023-submission-a16-australian-human-rights-commission.pdf">100 disability discrimination complaints against airlines</a> in the six years to 2022, including the period in which COVID restrictions saw air travel severely limited. </p>
<p>Issues included: </p>
<ul>
<li>assistance animal refusals</li>
<li>inaccessible facilities</li>
<li>inaccessible ticketing arrangements for people with vision impairments</li>
<li>taxis and rideshare providers not turning up, long delays or
refusing passengers with disability aids and/or assistance animals.</li>
</ul>
<p>These issues highlight a system underpinned by unchallenged <a href="https://theconversation.com/ableism-and-disablism-how-to-spot-them-and-how-we-can-all-do-better-204541">ableism</a> – discrimination that favours people without disability. </p>
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<h2>Freedom of movement</h2>
<p>An important right under the <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-20-personal-mobility.html">United Nations Convention on the Rights of Persons with Disabilities</a> is freedom of movement. This right seeks to enable all people to be <a href="https://www.tandfonline.com/doi/full/10.1080/09687599.2023.2203307">included in society in ways they self-determine</a>. </p>
<p>Ableism in air travel is a fundamental denial of independence and freedom of movement. Discrimination can be even more blatant and offensive. People have been removed from flights or denied boarding because there are <a href="https://www.infrastructure.gov.au/sites/default/files/documents/awptor2023-submission-a16-australian-human-rights-commission.pdf">limits on the number of wheelchair users who can access an aircraft</a> or because they require additional support to access facilities. </p>
<p>People with disability report the removal of, or damage to, <a href="https://www.abc.net.au/news/2023-10-31/virgin-airline-wheelchair-damage-broken-compensation/103010472">personal mobility equipment</a>, and lack of suitable equipment. In the most severe cases, people have been <a href="https://www.9news.com.au/national/australians-with-disabilities-suffer-dehumanising-treatment-at-airports-travel-news/b7de6139-258a-4e86-a615-031eb0e89074">injured during travel</a> or left stranded in dangerous circumstances.</p>
<h2>Inconsistency can fuel ableism</h2>
<p>Inconsistent policies and practices significantly impact travellers with disability. This is made worse by the fact that individual airlines and airports are encouraged by government to develop their own <a href="https://www.infrastructure.gov.au/infrastructure-transport-vehicles/aviation/aviation-access-forum-aaf/dafp">Disability Access Facilitation Plans</a>. </p>
<p>So, it is not surprising when news reports highlight instances of assistance dogs being denied travel <a href="https://www.abc.net.au/news/2023-12-15/jetstar-assistance-dog-policy-criticised/103221894">domestically</a> and <a href="https://www.nytimes.com/2023/08/22/travel/jetblue-service-animal-dot-open-form.html">internationally</a>, even when they’ve <a href="https://www.abc.net.au/news/2023-12-20/qantas-sued-over-assistance-dog/103223736">previously been approved</a> by other airlines. </p>
<p>Lack of consistency, negative attitudes, stereotypes and prejudices in the air travel industry have resulted in <a href="https://www.independent.co.uk/travel/singapore-airlines-disability-discrimination-amputee-b2301471.html">reportedly aggressive eviction of passengers</a> with disability from exit rows. Others report being told to “<a href="https://qdn.org.au/wp-content/uploads/2023/06/Voice-of-Queenslanders-with-Disability-report.pdf">catheterise</a>” (to insert a tube through the urethra to the bladder) to avoid needing toilet facilities on an overseas flight. Many people with disability experience situations like Innes’ where they are subjected to alternative, sometimes undignified, processes. </p>
<p>Ongoing experiences of ableism not only deny people with disability their rights to travel but can also <a href="https://www.tandfonline.com/doi/full/10.1080/09687599.2023.2203307">damage their dignity</a>. Anticipation of discrimination can increase anxiety and stress for travellers with disability or prevent them travelling altogether. </p>
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Read more:
<a href="https://theconversation.com/heres-why-we-need-a-disability-rights-act-not-just-a-disability-discrimination-one-214715">Here's why we need a disability rights act – not just a disability discrimination one</a>
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<h2>Slow reform</h2>
<p>These stories and many others point to the need for urgent reform. </p>
<p>Stories shared by more than 60 participants in a special Disability Royal Commission session prompted its chair to <a href="https://disability.royalcommission.gov.au/news-and-media/media-releases/chair-writes-ceos-airlines-and-airports#:%7E:text=The%20Chair%20of%20the%20Disability,their%20experiences%20with%20air%20travel">write directly to the CEOs</a> of Australian airlines and airports, urging them to work on solutions.<br>
The review and modernisation of the <a href="https://www.infrastructure.gov.au/infrastructure-transport-vehicles/transport-accessibility/transport-disability-standards">2002 Disability Standards for Accessible Public Transport</a> along with the upcoming release of the Australian government’s <a href="https://www.infrastructure.gov.au/infrastructure-transport-vehicles/aviation/aviation-white-paper">Aviation White Paper</a> could be key mechanisms to address systemic discrimination. But only if key recommendations from disability organisations and advocacy centres are adopted. They include: </p>
<ol>
<li><p><a href="https://www.infrastructure.gov.au/sites/default/files/documents/agp2023-submission-c170-australian-federation-of-disability-organisations-and-national-inclusive-transport-advocacy-network.pdf">specific standards</a> for air travel co-designed with people with disability and representative organisations. <a href="https://www.engineersaustralia.org.au/sites/default/files/2022-04/Universal-Design-for-Transport-TAs-discussion-paper-20220421.pdf">Universal design</a> aims to make products and environments usable by all people, without adaptation. It can play an important role in overcoming the systemic barriers in infrastructure and service design to create more seamless and inclusive transport and air travel experiences </p></li>
<li><p><a href="https://piac.asn.au/wp-content/uploads/2023/12/PIAC-Submission-to-Aviation-Green-Paper.pdf">reportable and enforceable standards</a> and independent oversight, such as funding the Human Rights Commission to oversee compliance. </p></li>
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Read more:
<a href="https://theconversation.com/a-new-year-means-new-fitness-goals-but-options-for-people-with-disability-are-few-and-far-between-220143">A new year means new fitness goals. But options for people with disability are few and far between</a>
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<h2>Complaints are just one route</h2>
<p>The exclusion of people with disability from seamless airline travel is a violation of their fundamental right to freedom of movement. </p>
<p>Decades of travel horror stories in the media, continuing legislative reviews and national enquiries should bring change. Everyone should be able to make journeys with dignity and autonomy. People with disability deserve the same travel privileges as non-disabled Australians. </p>
<p>Governments and the aviation industry will need to collaborate to implement comprehensive accessibility measures, ranging from wheelchair-friendly facilities to trained staff capable of providing appropriate assistance. Embracing inclusivity in air travel not only aligns with the principles of equity but also contributes to a society that celebrates diversity.</p>
<p>For now, there are a number of ways to raise complaints, including with the individual airline or with the <a href="https://humanrights.gov.au/complaints/make-complaint">Human Rights Commission</a>. Raising complaints with the Human Rights Commission can be completed by anyone who experiences discrimination. Legal support and advice may also be sought from some state-based legal aid organisations.</p>
<p>While complaints are one mechanism for change, more proactive methods for change include the disability royal commission’s recommendation for the design and implementation of a <a href="https://teamdsc.com.au/resources/inside-the-disability-royal-commission-s-final-report">Disability Rights Act</a>, which would see human rights enshrined in legislation and facilitate barrier-free travel.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1617374079673339906"}"></div></p>
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Read more:
<a href="https://theconversation.com/i-want-to-get-bogged-at-a-beach-in-my-wheelchair-and-know-people-will-help-micheline-lee-on-the-way-forward-for-the-ndis-213348">'I want to get bogged at a beach in my wheelchair and know people will help'. Micheline Lee on the way forward for the NDIS</a>
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<img src="https://counter.theconversation.com/content/221740/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kelsey Chapman receives research funding from the Queensland Government. She is a member of the Metro South Health Disability Community Advisory Committee and Health Translation Queensland.</span></em></p><p class="fine-print"><em><span>Elizabeth Kendall receives funding from Australian Research Council, Motor Accident Insurance Commission, National Health and Medical Research Council and Medical Research Futures Fund. </span></em></p><p class="fine-print"><em><span>Lisa Stafford receives funding from Australian Research Council and MRRF. She is affiliated with Transport Australia society (member), Planning Institute of Australia (member) and Disability Leadership Institute (member). This article is mine and my colleagues views only, and is not representing any of these organisations.</span></em></p>If a former disability discrimination commissioner can be subjected to humiliating treatment at an airport, it’s likely the travel experiences of ‘everyday’ Australians with disability are even worse.Kelsey Chapman, Research Fellow Dignity Project, Griffith UniversityElizabeth Kendall, Professor, Director, Griffith Inclusive Futures, Griffith University, Griffith UniversityLisa Stafford, Adjunct Senior Research Fellow, Inclusive Futures Centre, Griffith UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2207742024-01-16T19:15:21Z2024-01-16T19:15:21ZDave Chappelle has built a reputation for ‘punching down’ on trans people – and now he’s targeting disabled people<p>Dave Chappelle’s latest Netflix special, The Dreamer, opens with a story about meeting Jim Carrey, who, at the time, was method acting and portraying comedian Andy Kaufman. </p>
<p>Chappelle recalls being “very disappointed” at having to pretend to be speaking to Kaufman, when he could clearly see it was Carrey. The punchline? “That’s how trans people make me feel.”</p>
<p>Whether or not non-transgender people find it funny, it is a joke that stabs at the fundamental insecurity of being trans. It takes the stance of <a href="https://www.oxfordreference.com/display/10.1093/oi/authority.20110803095507973">biological essentialism</a>: that people have innate and intractable traits by virtue of their biology. </p>
<p>Biological essentialism <a href="https://spssi.onlinelibrary.wiley.com/doi/full/10.1111/sipr.12099">has been used</a> by the <a href="https://commonslibrary.org/the-anti-trans-movement/">anti-trans</a> lobby to deny that trans women are women and trans men are men, and to justify sexism and racism <a href="https://theconversation.com/what-is-essentialism-and-how-does-it-shape-attitudes-to-transgender-people-and-sexual-diversity-203577">before that</a>.</p>
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Read more:
<a href="https://theconversation.com/what-is-essentialism-and-how-does-it-shape-attitudes-to-transgender-people-and-sexual-diversity-203577">What is essentialism? And how does it shape attitudes to transgender people and sexual diversity?</a>
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<p>Chappelle’s Netflix specials have become notorious for his jokes targeting the transgender community, but Chappelle has claimed his comedy is <a href="https://variety.com/2022/tv/news/dave-chappelle-netflix-speech-whats-in-a-name-1235311467/">more nuanced</a> and artistic than his critics allow.</p>
<p>He claims to be an equal opportunity offender, “punching down” (his words) to all minorities equally. To prove this point, in The Dreamer he takes on what he calls “handicapped jokes”.</p>
<h2>Mirroring prejudice</h2>
<p>While the word “handicapped” was once used to describe people with disability, it is <a href="https://adata.org/factsheet/ADANN-writing">now considered offensive</a>. Chappelle is either unaware or just doesn’t care that the term is decades out of date.</p>
<p>Comedy, at its best, draws from and reveals insight into the human condition. It slips into mockery when, bereft of understanding, it does nothing more than mirror prejudice.</p>
<p>Chappelle’s first disability joke has the potential to be clever and insightful. He says:</p>
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<p>there’s probably a handicap in the back right now ’cause that’s where they make them sit.</p>
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<p>A joke about the placement of people with disability at the back of the theatre is clever as it unmasks social disadvantage. In different hands, it could be a reflection on the <a href="https://pwd.org.au/resources/models-of-disability/">social model of disability</a>.</p>
<p>The social model of disability says the problem of disability is not “handicapped” bodies but the social environment designed to exclude and marginalise them. For example, a wheelchair user is not disabled because they cannot walk (they have wheels for mobility), but because of a lack of access to ramps – or a theatre which insists they sit at the back of the room.</p>
<p>But clever turns to mockery with a visual punchline, as Chappelle twists his hand and walks like a “cripple”. It is mockery bereft of understanding.</p>
<p>A crass attack on paraplegic sexual function follows: “Who the fuck invites a paraplegic to an orgy?”. It’s ableism masquerading as comedy. </p>
<p><a href="https://theconversation.com/ableism-and-disablism-how-to-spot-them-and-how-we-can-all-do-better-204541">Ableism</a> refers to stereotypical attitudes and behaviours that dehumanise people with disability, treating them as different, less than, incapable, foolish, laughable, excludable. In this case, Chappelle repeats <a href="https://link.springer.com/article/10.1007/s13178-023-00873-5">the damaging and false stereotype</a> that people with disability are asexual and unsexy. </p>
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Read more:
<a href="https://theconversation.com/ableism-and-disablism-how-to-spot-them-and-how-we-can-all-do-better-204541">Ableism and disablism – how to spot them and how we can all do better</a>
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<p>Australia’s Disability Royal Commission <a href="https://disability.royalcommission.gov.au/system/files/2023-03/Public%20hearing%2028%20-%20Counsel%20Assisting%20submissions%20-%20SUBM.0047.0001.0105.pdf">heard</a> how ableism, especially as propagated in the media, drives violence, abuse, neglect and exploitation of people with disability. It noted we learn our language and attitudes from the media and popular culture, which often leads to abusive behaviour in public and online.</p>
<p>When comedy relies on humiliation and cruelty to earn its laughter it can have serious consequences. Rather than propagate ableism, <a href="https://www.routledge.com/Film-Comedy-and-Disability-Understanding-Humour-and-Genre-in-Cinematic/Wilde/p/book/9780367587680">comedy can deconstruct it</a>, revealing the absurdity of discrimination, and questioning notions of normality, abnormality and ideas of difference.</p>
<p>But watching the special, it feels like disability is not Chappelle’s real target. Instead, it seems he embraces being an “equal opportunity” offender who mocks disability as a defence for his long-running transgender jokes.</p>
<h2>The impacts of mockery</h2>
<p>Witty transgender comedy might highlight the social issues trans people face, but Chapelle exemplifies those issues. In The Dreamer, he makes the tired joke that if he was arrested in California he’d claim in court that he identified as a woman to be sent to women’s jail so he could have sex with women.</p>
<p>His jokes rely on prevailing disgust about transgender bodies and increasingly politicised insistence that transgender people are not real women or men. These views shared in popular culture are <a href="https://www.tandfonline.com/doi/abs/10.1080/10570314.2019.1615635">coming to inform</a> anti-trans policy in healthcare, education and the justice system. </p>
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<p>As the majority of the general population <a href="https://www.ipsos.com/sites/default/files/ct/news/documents/2023-06/Ipsos%20Global%20Advisor%20-%20LGBT%2B%20Pride%202023%20-%20AUSTRALIAN%20Press%20Release.pdf">do not know a trans person</a>, the media has significant influence over perceptions of trans people. </p>
<p>Throughout four Netflix specials, Chapelle has made no effort to understand the object of his jokes or the impact of his mockery on their daily lives. While trans representation in the media is improving, trans people are still exposed to a plethora of <a href="https://doi.org/10.36828/newvistas.226">negative depictions</a> of their identities in the media across a range of mediums. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7826438/">Research</a> shows this is significantly associated with clinical levels of depression, anxiety and psychological distress. </p>
<p>Near the end of The Dreamer, Chappelle paints himself as the victim of the “unjust” LGBTQI+ campaign against his comedy, which included Chappelle being <a href="https://www.npr.org/2022/05/04/1096547296/dave-chappelle-video-attacked-onstage-performance-hollywood-bowl-netflix">physically attacked</a> on stage at a 2022 show. </p>
<p>Physical violence is never justified. However it should be noted comedy which “punches down” on trans people <a href="https://link.springer.com/article/10.1007/s13178-017-0280-2">helps to drive</a> the negative perceptions that lead to <a href="https://equityhealthj.biomedcentral.com/articles/10.1186/s12939-022-01632-5">violence</a> against queer people that we see on social media feeds and in the daily experience of transgender people globally. </p>
<p>Chappelle is an influential comedian who proudly punches down. It is true he is an egalitarian bully. In The Dreamer, he laughs at disability, bisexuality and gay men. But his jokes continue to come back to one target: the transgender community. When will we say enough is enough? When will we stop laughing?</p>
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Read more:
<a href="https://theconversation.com/yes-words-can-harm-young-trans-people-heres-what-we-can-do-to-help-176788">Yes, words can harm young trans people. Here's what we can do to help</a>
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<img src="https://counter.theconversation.com/content/220774/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>In The Dreamer, Chapelle laughs at disability, bisexuality and gay men. But his jokes continue to come back to one target: the transgender community.Shane Clifton, Associate Professor of Practice, School of Health Sciences and the Centre for Disability Research and Policy, University of SydneyJemma Clifton, Research officer, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2171552023-11-20T21:11:36Z2023-11-20T21:11:36ZThe 15-minute city is a popular planning approach, but relies on ableist assumptions<figure><img src="https://images.theconversation.com/files/559829/original/file-20231116-20-8b0gta.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C6000%2C3988&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Designing cities around the amount of time needed to reach services and amenities is a popular planning approach.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/the-15-minute-city-is-a-popular-planning-approach-but-relies-on-ableist-assumptions" width="100%" height="400"></iframe>
<p>The 15-minute city is a popular urban planning concept that promotes people living close to essential services, and encourages the use of walking and biking. Public transit is sometimes included in the transport mix, preferred to automobiles, which are largely absent.</p>
<p>Developed around 2016 by Paris-based urbanist <a href="https://www.moreno-web.net/">Carlos Moreno</a>, the idea of the 15-minute city has spread globally. Moreno subscribes to <a href="https://doi.org/10.1177/0961463X14535905">chrono-urbanism</a>, or the idea of organizing cities around time including the 15-minute city.</p>
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<figcaption><span class="caption">Urbanist Carlos Moreno describes the 15-minute city approach.</span></figcaption>
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<p>For his work, Moreno has received numerous accolades and negative attention, particularly from the political <a href="https://www.nytimes.com/2023/03/28/technology/carlos-moreno-15-minute-cities-conspiracy-theories.html">right and conspiracy theorists</a> claiming it will restrict people’s <a href="https://apnews.com/article/fact-check-15-minute-city-conspiracy-162fd388f0c435a8289cc9ea213f92ee">freedom of movement</a>.</p>
<p>Moreno isn’t the only contemporary urbanist who thinks about time as a key organizing principle for the design of sustainable cities. Variations on the theme include: <a href="https://doi.org/10.1016/j.jth.2019.05.005">15-minute walkable neighbourhoods</a>, the <a href="https://www.mdpi.com/2071-1050/12/1/129">20-minute city</a>, the <a href="https://ses.library.usyd.edu.au/handle/2123/21630">30-minute city</a>, and so on. </p>
<p>None of these, however, have gained as much traction as the 15-minute city. Moreno’s work has been plugged into the global <a href="https://doi.org/10.3390/smartcities4010006">conversation about UN Sustainable Development Goal 11</a>: making cities and communities “<a href="https://sdgs.un.org/goals/goal11">inclusive, safe, resilient and sustainable</a>.”</p>
<p>Can one planning concept possibly lead us toward sustainable and inclusive urban futures? </p>
<h2>Health, time and the past</h2>
<p>One unifying feature of the 15-minute city — or 20-, or 30-minute city — seems to be that by making most everyday activities doable by moving actively over shorter distances, we will become healthier. Research has already shown that <a href="https://doi.org/10.1016/j.tranpol.2015.04.005">driving less will likely produce health benefits for some people</a>. </p>
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Read more:
<a href="https://theconversation.com/heart-health-design-cities-differently-and-it-can-help-us-live-longer-162038">Heart health: design cities differently and it can help us live longer</a>
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<p>Another area of consensus appears to be that these approaches, employed globally, will successfully treat our <a href="https://www.taylorfrancis.com/chapters/edit/10.4324/9780203107683-1/understanding-twenty-first-century-urban-transformation-elliott-sclar-nicole-volavka-close">largely urban</a> and catastrophic engagement with the environment. </p>
<p>While the 15-minute city might be considered revelatory by some, the relationship between cities and time is as old as cities. In the North American context, before the car and before and during the <a href="https://utorontopress.com/9781442679351/ride-to-modernity/">bike boom of the 1890s</a>, amenities and services were located close to where people lived.</p>
<h2>Ableism and disability</h2>
<p>I think about planning, cities and transportation through a critical ableist and disability studies lens. My lived experience as a parent of a disabled child also informs my <a href="https://doi.org/10.1080/09687599.2023.2279488">research on urban accessibility</a>. </p>
<p>When considering the 15-minute city, I think about the relationship between <a href="https://doi.org/10.1057/dev.2008.17">ableism</a> — the practices and abilities considered <a href="https://doi.org/10.4324/9780203366974">normative by society</a> and the social model of disability. The <a href="https://doi.org/10.1007/978-1-349-86058-6">social model of disability</a> — one of several frameworks — is the idea that disability is produced by discriminatory barriers in society. Ableism produces disability.</p>
<p>The 15-minute city relies on residents’ abilities to walk and bike. This raises several questions: What if a resident’s body <a href="https://doi.org/10.18061/dsq.v42i1.8276">doesn’t walk or bike</a> in what is considered a normative sense? What if someone <a href="https://doi.org/10.1016/j.jtrangeo.2022.103521">uses a mobility device or moves at a slower pace</a>? What if a resident requires <a href="https://doi.org/10.1016/j.tra.2021.04.005">public or school transportation vehicles to be adapted</a>? </p>
<p>There is no universality to 15 minutes spent in any city. Marginalized people, for example, are more likely to be <a href="https://doi.org/10.1016/j.jtrangeo.2021.103003">harassed</a> or <a href="https://doi.org/10.1016/j.jtrangeo.2023.103576">over-policed</a>.</p>
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<a href="https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="a green wall with handwritten graffiti saying 15 MINUTE CITIES R EVIL WILL TAKE OUR FREEDOM" src="https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/559831/original/file-20231116-27-rt97p3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Graffiti in a Weston-super-Mare, U.K. bus shelter referring to conspiracy theories about 15-minute cities.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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</figure>
<h2>Planning policy and regulation</h2>
<p>Urban planning and city building occur with a regulatory context. The 15-minute city is unlikely to materialize without professional scrutiny and regulatory compliance. </p>
<p>In Ontario, the <a href="https://www.ontario.ca/laws/statute/05a11">Accessibility for Ontarians with Disabilities Act</a>, the <a href="https://www.ontario.ca/laws/regulation/110191">Integrated Accessibility Standards Regulation</a>, the <a href="https://www.ontario.ca/laws/regulation/120332">Ontario Building Code</a> and zoning by-laws regulate accessibility in cities. The <a href="https://www.ohrc.on.ca/en/ontario-human-rights-code">Ontario Human Rights Code</a> — which prohibits discrimination — protects the right of equal access to services. </p>
<p>The details of this regulatory environment reveal an emphasis on physical disability and serious <a href="https://aoda.ca/recommendations-in-the-third-review-of-the-aoda/">limitations</a> in terms of revision and enforcement. It would therefore be foolish to rely on such a relatively inflexibly narrow regulatory environment to make up for any ableist limitations of planning concepts used to shape sustainable, inclusive urban futures. </p>
<h2>Educating planners</h2>
<p>Disability is often an <a href="https://doi.org/10.1177/0739456X231175595">afterthought in planning education and practice</a>. Perhaps this reflects a lack of representation of disability, and disabled persons in planning education and professional practice. </p>
<p>Designing sustainable, inclusive urban futures, however, requires inclusive education, thinking, rhetoric and design from the beginning. My challenge to those involved in urban design and planning — including planners, engineers, geographers and architects — is to consider what cities or neighbourhoods might look like when <a href="https://www.routledge.com/Doing-Disability-Differently-An-alternative-handbook-on-architecture-disability/Boys/p/book/9780415824958">designed</a> with <a href="https://www.upress.umn.edu/book-division/books/the-architecture-of-disability">disability in mind</a>.</p><img src="https://counter.theconversation.com/content/217155/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ron Buliung does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The idea of the 15-minute city has become popular globally. But this approach relies on ableist assumptions and doesn’t reflect inclusive urban design.Ron Buliung, Professor, Department of Geography, Geomatics and Environment, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2150722023-10-06T00:44:58Z2023-10-06T00:44:58ZPolitics with Michelle Grattan: Greens Jordon Steele-John on the disability royal commission and Bill Shorten’s NDIS reforms<p><em>The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has shared its final report. In this <a href="https://theconversation.com/au/topics/disability-rc-2023-146083">series</a>, we unpack what the commission’s 222 recommendations could mean for a more inclusive Australia.</em></p>
<hr>
<p>The federal government last week released the report of the <a href="https://disability.royalcommission.gov.au">Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability</a>, which painted a confronting picture and recorded the calls of disabled people “for a more inclusive Australia”.</p>
<p>The commission made more than 220 recommendations, and was conducted at a cost to the taxpayer of $600 million. But commissioners split on the key issues of special schools and group housing for people with disabilities, causing immediate controversy. </p>
<p>In this podcast, the Greens spokesman on disability, Jordon Steele-John, who campaigned for the royal commission, joins The Conversation to discuss the report, and also to canvass the NDIS, which is under review in another inquiry. </p>
<p>Steele-John feels “immense pride” in the disabled community for their contribution to the royal commission report, and sees it as a milestone: </p>
<blockquote>
<p>This is the work of so many people who have themselves experienced violence, abuse, exploitation and neglect, who campaigned for decades to see this investigation be undertaken […] It’s a milestone for the Australian disability community who have come together in the aftermath of this report to say ‘now is the time to end segregation and to end ableism in Australian government policy’.</p>
</blockquote>
<p>Steele-John opposes separating disabled people into special schools and group homes, so he backs those commissioners who want a phase-out. But he believes the proposed timelines are unnacceptably long. </p>
<blockquote>
<p>They’ve suggested that we wait until 2050. In segregated education, for instance, that would mean that a disabled child born today would be likely to see their child educated in a segregated setting. That’s not acceptable. </p>
<p>They’ve also recommended that we take a decade to reach the point at which a disabled person is paid the same as a non-disabled person in the workplace. That’s unacceptable, but I think it is really important that we really grapple with and acknowledge the reality of the damage that segregation does to people. It leads to loneliness and isolation, and it exposes them to the violence, abuse and neglect that the recommendations in the report found.</p>
</blockquote>
<p>While Steele-John has seen an improvement in the NDIS since Labor won the election, he has criticisms. </p>
<blockquote>
<p>My quite critical observation of the government is that they have, I think, failed to push back on and have in many ways bought into a conversation about the NDIS, which is very one sided, focusing on its financial implications on the overall federal budget and minimising the good that it does in people’s lives; while point blank refusing to commission new research or investigations into the positive economic impact of a scheme who, the last time anybody checked, [the investment] actually returned $2.25 for every dollar that was invested in it. </p>
<p>So if you combine that with the fact that the minister’s made a number of comments and their colleagues have made a number of comments about people with psychosocial disabilities and other disabilities and there being too many of them on the scheme, I think that’s really concerning to me and really concerned to the disability community more broadly.</p>
</blockquote><img src="https://counter.theconversation.com/content/215072/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michelle Grattan does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>In this podcast, Greens Senator and disability advocate Jordon Steele-John, who campaigned for the Royal Commission, joins The Conversation to give us his take on the report.Michelle Grattan, Professorial Fellow, University of CanberraLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2132532023-09-27T20:05:09Z2023-09-27T20:05:09ZThe disability royal commission delivers its findings today. We must all listen to end violence, abuse and neglect<p><em>The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has shared its final report. In this <a href="https://theconversation.com/au/topics/disability-rc-2023-146083">series</a>, we unpack what the commission’s 222 recommendations could mean for a more inclusive Australia.</em> </p>
<hr>
<p>The <a href="https://disability.royalcommission.gov.au/">Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability</a> will hand its final report and recommendations to the Australian governor general today. </p>
<p>Many people are waiting keenly to hear how the recommendations can make a difference to the lives of people with disability. Others are unsure how the royal commission could improve people’s safety and wellbeing. </p>
<p>Since it was established in mid-2019, the <a href="https://disability.royalcommission.gov.au/">disability royal commission</a> has held 32 public hearings with evidence from 837 witnesses and received 7,944 submissions – 55% from people with disability and 29% from family members.</p>
<p>While we wait for the report to be made public, we can learn from how government action from the previous <a href="https://www.childabuseroyalcommission.gov.au/">child abuse royal commission</a> helped improve people’s lives. </p>
<h2>What was involved</h2>
<p>The disability royal commission was a big and long investigation. Over four and half years, it held hearings, heard stories from witnesses, received submissions and conducted research. All the evidence shared by people about their experiences and the poor quality of our current policies means many now have high expectations that the commission must generate change. </p>
<p><a href="https://disability.royalcommission.gov.au/system/files/2023-05/Research%20Report%20-%20Rapid%20Evidence%20Review%20-%20Violence%2C%20abuse%2C%20neglect%20and%20exploitation%20of%20people%20with%20disability.pdf">High rates</a> of violence and harm against people with disability have not improved very much over many decades. The impact of this ongoing history of violence was evident in the <a href="https://disability.royalcommission.gov.au/system/files/2020-10/Research%20Report%20-%20Something%20Stronger_Truth-telling%20on%20hurt%20and%20loss%2C%20strength%20%20and%20healing%2C%20from%20First%20Nations%20people%20%20with%20disability.pdf">grief and trauma</a> expressed by the thousands of people at the commission’s public and private hearings. </p>
<p>Research about violence, harm prevention and personal safety shows change needs be in <a href="https://disability.royalcommission.gov.au/system/files/2023-05/Research%20Report%20-%20Changing%20community%20attitudes%20to%20improve%20inclusion%20of%20people%20with%20disability.pdf">two parts</a>. </p>
<p>Making changes to specialist systems such as the <a href="https://www.ndiscommission.gov.au/">National Disability Insurance Scheme</a> (NDIS) – currently under review – will help those involved. Bigger change is also needed to address the social problems and criminal acts that compromise the safety and wellbeing of people with disability. This fundamental change is urgently needed. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/inclusion-means-everyone-5-disability-attitude-shifts-to-end-violence-abuse-and-neglect-199003">Inclusion means everyone: 5 disability attitude shifts to end violence, abuse and neglect</a>
</strong>
</em>
</p>
<hr>
<h2>Ableism and ‘othering’</h2>
<p>Violence can <a href="https://disability.royalcommission.gov.au/system/files/2020-10/Research%20Report%20-%20Hierarchies%20of%20power_Disability%20theories%20and%20models%20and%20their%20implications%20for%20violence%20against%2C%20and%20abuse%2C%20neglect%2C%20and%20exploitation%20of%2C%20people%20with%20disability.pdf">happen</a> when people with disability are seen as less valuable, or even less than human – a perspective called “othering”.</p>
<p>People with disability are often treated in ways that are not acceptable for any member of society. When people without disability are prioritised, it is called “<a href="https://theconversation.com/ableism-and-disablism-how-to-spot-them-and-how-we-can-all-do-better-204541">ableism</a>”. When people with disability are viewed or treated as inferior, it is called “disablism”. </p>
<p>An example of these types of discrimination is when a waiter asks a carer what a person with disability wants, instead of asking the person themselves. Or when a person with disability is <a href="https://theconversation.com/people-with-disabilities-in-group-homes-are-suffering-shocking-abuse-new-housing-models-could-prevent-harm-197989">expected to live</a> with <a href="https://www.unsw.edu.au/research/sprc/our-projects/supported-accommodation-evaluation-framework-saef">strangers who hit them</a>, because that is the only housing available. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ableism-and-disablism-how-to-spot-them-and-how-we-can-all-do-better-204541">Ableism and disablism – how to spot them and how we can all do better</a>
</strong>
</em>
</p>
<hr>
<p>You might think excluding people in these ways does not happen anymore or does not matter. But our current social structures make it depressingly common. </p>
<p>Children with disability report high rates of <a href="https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(21)00371-0/fulltext">loneliness and bullying</a> at school. People using disability services are <a href="https://www.tandfonline.com/doi/full/10.1080/09687599.2022.2029357">grouped together</a> and called “clients” or “participants” instead of by their names. People cannot reliably find a <a href="https://www.sbs.com.au/news/article/most-public-toilets-inaccessible-to-people-with-disabilities/adsx7cnr8">usable, accessible toilet</a> when they are out and this can stop them from leaving their home at all. </p>
<p>These daily problems <a href="https://www.researchdci.flinders.edu.au/projects/confronting-everyday-harms%3A-preventing-abuse-of-people-with-disability">set a norm</a> where violence is usual and less likely to be checked or punished. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/i-want-to-get-bogged-at-a-beach-in-my-wheelchair-and-know-people-will-help-micheline-lee-on-the-way-forward-for-the-ndis-213348">'I want to get bogged at a beach in my wheelchair and know people will help'. Micheline Lee on the way forward for the NDIS</a>
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</em>
</p>
<hr>
<h2>What we hope the commission will recommend</h2>
<p>The disability royal commission listened to people with disability, family members and organisations about what they want to happen. A consistent <a href="https://www.inclusionaustralia.org.au/joint-media-statement-disability-rights-organisations-call-for-an-end-to-the-violence/">view</a> is that it is not enough to focus on stopping violent acts where they are happening now. We need strong government responses that address the root causes of segregation, discrimination and exclusion. </p>
<p>Law and policy must prioritise people with disability and their allies in the way solutions are found and implemented.</p>
<p>We know from the government responses to the previous child abuse commission that <a href="https://www.tandfonline.com/doi/full/10.1080/14443058.2018.1467725">four factors</a> made an immediate difference to the safety and wellbeing of children:</p>
<ul>
<li>bringing child sexual abuse into public discussion</li>
<li>prioritising the <a href="https://onlinelibrary.wiley.com/doi/full/10.1002/ajs4.134?casa_token=0aMFz18YDQwAAAAA%3ASel-vHYdZg-lhNinOyRR8W05746DWIo8JZhheqDXHvAKJyYhhgf-ZwVSzPGeu97I8gj8SevD8_KGMNY">voices</a> of children and survivors in policy and practice about them</li>
<li>compulsory compliance for any organisation in contact with children to meet <a href="https://childsafe.humanrights.gov.au/national-principles/about-national-principles">safety standards</a></li>
<li>requiring any organisation with a history of child abuse to participate in a <a href="https://www.nationalredress.gov.au/?gclid=CjwKCAjw38SoBhB6EiwA8EQVLqe5aL4x6zXcHsSrruc_81lKMe2KTenvmW1kiuPDPZCzJ9Q_jcqinRoCPV4QAvD_BwE&gclsrc=aw.ds">redress scheme</a>, with sanctions if they refuse or delay.</li>
</ul>
<p>The disability royal commission recommendations and government responses should follow the example set by the child abuse commission. The need for a voice, compliance and quality standards remains relevant to people affected by disability policy. </p>
<p>And the responsibility for real change stretches beyond government. Change happens when the responsibility to listen and act is <a href="https://www.unsw.edu.au/research/sprc/our-projects/changing-community-attitudes-to-improve-inclusion-for-people-wit">taken up</a> by all organisations, communities and members of the public. </p>
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<h2>What happens next</h2>
<p>The disability royal commission recommendations to the government will be important not only for preventing and responding to violence, but also for how people with disability are treated fairly by every person, every day.</p>
<p>Equally, how the government responds to the recommendations is vital. Immediate action, as we saw in the child abuse commission, will demonstrate priority for the rights of people with disability.</p>
<p>Everyone’s contribution to changing attitudes, building belonging and recognising people’s shared humanity is needed to defeat exclusion and prevent violence. </p>
<p>Poet <a href="https://amongtheregulars.com/">Andy Jackson</a> recited his work <a href="https://comms.external.royalcommission.gov.au/v/89073/1613401/email.html?k=ws1yfek5f9DM_7EWZaiUh6PwHn4hJeVWMleBIksMslk&ref=bluntshovels.au#listen">Listen</a> at the disability royal commission’s ceremonial closing sitting two weeks ago. His words were a powerful call to action, including the lines: </p>
<blockquote>
<p>Here in this awkward, sacred stillness open your mouth, ears, hands </p>
<p>The air is full of seeds </p>
<p>This time let your discomfort mean something </p>
<p>This cannot be the end of listening but its beginning[.]</p>
</blockquote><img src="https://counter.theconversation.com/content/213253/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sally Robinson receives research funding from the Australian Research Council and Australian Federal and State governments. </span></em></p><p class="fine-print"><em><span>Karen R Fisher receives funding from Australian Research Council, state and federal governments and nongovernment organisations. </span></em></p>The disability royal commission has heard from thousands of people with disability and their families. But the response must involve everyone.Sally Robinson, Professor, Disability and Community Inclusion, Flinders UniversityKaren R Fisher, Professor, Social Policy Research Centre, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2088462023-07-09T20:05:41Z2023-07-09T20:05:41Z‘On my worst day …’ How the NDIS fosters a deficit mindset and why that should change<figure><img src="https://images.theconversation.com/files/536199/original/file-20230707-23-39ljac.jpg?ixlib=rb-1.1.0&rect=48%2C163%2C5622%2C4103&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com.au/detail/photo/two-professional-women-in-a-meeting-royalty-free-image/1170678263?phrase=disability&adppopup=true">Getty</a></span></figcaption></figure><p>The National Disability Insurance Scheme (NDIS) was designed to empower and support people with disability. But <a href="https://theconversation.com/a-decade-on-the-ndis-has-had-triumphs-challenges-and-controversies-where-to-from-here-208463">ten years</a> into the scheme, many participants are finding their encounters with the NDIS dehumanising and burdensome.</p>
<p>And, according to the scheme’s architect <a href="https://www.smh.com.au/politics/federal/ndis-now-exact-opposite-of-what-was-intended-says-scheme-s-godfather-20230629-p5dkf3.html">Professor Bruce Bonyhady</a>, service gaps are now pushing people to present “the worst version of themselves or their children” to secure the supports they need. </p>
<p>With the <a href="https://www.ndisreview.gov.au/resources/reports/what-we-have-heard-report">NDIS independent review</a> well underway, here’s why the scheme needs to reclaim its strengths-based roots and what’s currently getting in the way. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/a-decade-on-the-ndis-has-had-triumphs-challenges-and-controversies-where-to-from-here-208463">A decade on, the NDIS has had triumphs, challenges and controversies. Where to from here?</a>
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</em>
</p>
<hr>
<h2>Evaluating impairment</h2>
<p>The NDIS is what’s called a “<a href="https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7168-4">personalisation scheme</a>” that allows people with disability to control their government-funded services and resources. </p>
<p>To become an NDIS participant, applicants <a href="https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis">must provide evidence</a> of a permanent disability that significantly impacts their life or requires early intervention. Evaluating impairment is important for accurate support planning. </p>
<p>But assessments that focus on a person’s deficits can put them in a <a href="https://theconversation.com/dehumanising-and-a-nightmare-why-disability-groups-want-ndis-independent-assessments-scrapped-156941">vulnerable and confronting</a> position. Re-assessments may even <a href="https://theconversation.com/ndis-cost-scrutiny-is-intensifying-again-the-past-shows-this-can-harm-health-and-wellbeing-for-people-with-disability-203336">impact mental health</a>. </p>
<p>Once accepted into the scheme, NDIS participants might expect this experience is behind them – but personal accounts included in last week’s <a href="https://www.ndisreview.gov.au/resources/reports/what-we-have-heard-report#:%7E:text=We%20have%20heard%20how%20much,and%20economic%20benefits%20for%20Australia.">NDIS independent review interim report</a> suggest this is not the case. As one family member told the review:</p>
<blockquote>
<p>I love the NDIS. It has been a life saver for my family but not without stress, anxiety […] and seeing my family at breaking point. Every year we go through the same mundane crap and have to fight the fight, not knowing what the outcome will be.</p>
</blockquote>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1674601808277192712"}"></div></p>
<h2>The need for strengths-based planning</h2>
<p>Given the scheme’s design means NDIS participants have a verified permanent disability, they should not have to justify that they still need essential services. However, <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/hsc.13669">scheme participants report</a> facing interrogation about whether they are “disabled enough” to warrant funded support. They are regularly advised by providers and advocates to imagine their “worst day” when detailing the support they might need. </p>
<p>According to participants, this frequently occurs during the yearly evaluation of plans, which has been described by NDIS Minister Bill Shorten as a “<a href="https://youtu.be/YbRWH95OE68">traumatic process</a>.” The <a href="https://www.abc.net.au/news/2023-06-21/ndis-bill-shorten-cracking-down-prices-longer-plans/102505840">proposed revisions</a> to these assessments aim to reduce their frequency in order to alleviate the associated distress.</p>
<p>The World Health Organization <a href="https://www.who.int/news-room/fact-sheets/detail/disability-and-health">describes</a> disability as an interaction between health conditions, environments, and personal factors. Contrary to an insurance mindset, disability can’t be medically “fixed” while discrimination and access barriers persist. </p>
<p>Strengths-based practice helps us to account for this complexity and is a common approach in <a href="https://www.psychologytoday.com/au/therapy-types/strength-based-therapy">psychology</a>, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3939995/">mental health recovery</a> and <a href="https://education.nsw.gov.au/campaigns/inclusive-practice-hub/all-resources/secondary-resources/other-pdf-resources/aitsl--focusing-on-solutions-not-barriers">education</a>. Strengths-based planning defines capability in relation to someone’s self-identified goals and in the context of support. </p>
<p>While a “worst day” description could indicate that NDIS participant “Maggie” is unable to shower independently or maintain personal hygiene, a strengths-based assessment would highlight the following: </p>
<blockquote>
<p>With the aid of a shower chair and an adapted loofah, Maggie can work towards her goal of bathing safely and independently, while still acknowledging that occasional assistance may be required.</p>
</blockquote>
<p>The voice of NDIS planners is rarely heard in research, so it’s hard to know why the strengths-based approach isn’t taken more often. However, suggested reasons include a lack of disability expertise and unclear eligibility criteria. Planners may also be safeguarding against <a href="https://probonoaustralia.com.au/news/2021/07/ndis-independent-assessments-are-off-the-table-for-now-thats-a-good-thing-the-evidence-wasnt-there/">potential sympathy bias</a> in providers’ recommendations, although there is little evidence to show this bias exists in practice. </p>
<p>Regardless, the <a href="https://www.ndisreview.gov.au/resources/reports/what-we-have-heard-report#:%7E:text=We%20have%20heard%20how%20much,and%20economic%20benefits%20for%20Australia.">interim review</a> calls for a shift in responsibility away from people with disability, onto the National Disability Insurance Agency staff to show: </p>
<blockquote>
<p>[…] why their decisions of what is reasonable and necessary disagrees with that of a qualified professional.</p>
</blockquote>
<p>And research suggests <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/1467-8500.12531">NDIS paperwork</a> has a <a href="https://journals.sagepub.com/doi/abs/10.1177/1044207320932277">notable impact</a> on the information NDIS participants can share about themselves, and how their capabilities and needs are considered in planning. Revised assessment protocols that celebrate strengths and account for social barriers could scaffold a more collaborative and empowering approach to decision-making across the scheme. </p>
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<h2>An oasis in the desert</h2>
<p>The NDIS was intended to benefit all Australians with disability by investing in mainstream services and community inclusion. But those outside the scheme <a href="https://theconversation.com/the-ndis-is-set-for-a-reboot-but-we-also-need-to-reform-disability-services-outside-the-scheme-204041">have been left behind</a>, forced to self-fund essential services or go without. </p>
<p>Consequently, NDIS applicants feel pressured to report about their “worst days” and not showcase their strengths, in order to boost their chances of being accepted and retained in the scheme. These presentations are a symptom of competition in an under-resourced system.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-ndis-is-set-for-a-reboot-but-we-also-need-to-reform-disability-services-outside-the-scheme-204041">The NDIS is set for a reboot but we also need to reform disability services outside the scheme</a>
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</em>
</p>
<hr>
<p>The NDIS holds significance for a large portion of families, given that <a href="https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability">one in six Australians has a disability</a>. For the NDIS to work, our society needs to understand disability is more than just impairments. </p>
<p>Supporting a functional NDIS will allow people with disability to contribute to their families, jobs and communities. Making the world more accessible will enable these goals and is the real solution to reducing the cost of the scheme.</p><img src="https://counter.theconversation.com/content/208846/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kate Anderson receives funding from the Department of Health, the Department of Social Services, the Transport Accident Commission, Western Health, and Solve-TAD. </span></em></p><p class="fine-print"><em><span>Darryl Sellwood does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The NDIS needs to focus on helping people with disability reach their goals rather than what they can’t do. It’s time the NDIS returned to its roots.Kate Anderson, Vice Chancellor's Senior Research Fellow, RMIT UniversityDarryl Sellwood, Scholarly Fellow, Disability and Community Inclusion, Flinders University, Flinders UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2029972023-06-30T14:09:06Z2023-06-30T14:09:06Z‘Dehumanising policies’ leave autistic people struggling to access health, education and housing – new review<figure><img src="https://images.theconversation.com/files/534448/original/file-20230627-31322-i8q760.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4160%2C3120&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Autistic people often don't receive the correct healthcare to meet their needs.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-woman-many-people-waiting-medical-1033246597">toodtuphoto/Shutterstock</a></span></figcaption></figure><p><a href="https://www.cdc.gov/ncbddd/autism/data.html">Around 3% of people</a> are estimated to be autistic and it is a lifelong disability. Most autistic people experience the sensory world differently, such as places being too loud or too bright. We also typically communicate in a more direct way than is usual.</p>
<p>In the UK, the Equality Act 2010 means that autistic people should receive reasonable adjustments – meaning organisations must make changes to how they provide their services to remove environmental and social barriers. Despite this, autistic people often experience society as highly disabling. We die between 16 and 30 years younger than non-autistic people, and have a suicide rate <a href="https://journals.sagepub.com/doi/full/10.1177/1362361318764742">nine times higher</a>.</p>
<p>Autistic people are often misunderstood by non-autistic people who <a href="https://journals.sagepub.com/doi/10.1177/13623613221129123">fail to recognise</a> how autistic people show empathy. This misunderstanding is embedded in many government bodies, which can result in dehumanising policies and services that do not meet autistic people’s needs.</p>
<p><a href="https://library.oapen.org/handle/20.500.12657/63401">We reviewed</a> the evidence from a range of government and non-government research and reviews to understand how well autistic people fair in relation to government services. We looked at the areas described by William Beveridge, founder of the UK welfare state, as <a href="https://www.parliament.uk/about/living-heritage/transformingsociety/livinglearning/coll-9-health1/coll-9-health/#:%7E:text=By%20the%20outbreak%20of%20war,%2C%20disease%2C%20squalor%20and%20want.">“the five giants”</a>: health, education, employment, poverty and housing. Our findings, which focused on England and Wales due to differences relating to devolution, were bleak.</p>
<p><strong>1. Health</strong></p>
<p>Many government services designed to support autistic people are not available without diagnosis. However, in the UK, most autistic people <a href="https://journals.sagepub.com/doi/10.1177/13623613211059674">aren’t yet diagnosed</a>.</p>
<p>We found diagnosis waiting lists were long – for example, <a href="https://cavuhb.nhs.wales/our-services/integrated-autism-services/diagnostic-assessments-for-autism/">more then 20 months</a> for people served by the Cardiff & Vale health board in south Wales. Across England, between June 2021 and 2022, the waiting list for an autism assessment rose from <a href="https://digital.nhs.uk/data-and-information/publications/statistical/autism-statistics/july-2021-to-june-2022">88,000 people to more than 122,000</a>. </p>
<p>Even with a diagnosis, autistic people often don’t receive healthcare that meets their needs. Some people don’t even tell doctors they are autistic, because they expect to be treated badly. Of those who have told their GP, more than 75% said their GP didn’t make <a href="https://westminsterautismcommission.files.wordpress.com/2016/03/ar1011_ncg-autism-report-july-2016.pdf">any reasonable adjustments</a>, such as allowing extra processing time during appointments. </p>
<p>Being expected to phone to book appointments is also difficult for <a href="https://bmjopen.bmj.com/content/12/2/e056904">nearly two-thirds of autistic people</a>, yet many GP surgeries insist on phone calls to book appointments. Autistic people also report that clinical spaces <a href="https://www.ndti.org.uk/resources/publication/its-not-rocket-science">are painfully bright, busy and loud</a>, which can make it harder for us to explain what is wrong to the doctor.</p>
<p><strong>2. Education</strong></p>
<p>Autistic people often struggle in educational institutions because they rarely meet our needs. This can mean, for example, that autistic children are labelled as “troublemakers” by teachers, rather than disabled.</p>
<p>Despite autistic people accounting for only 3% of the population, around <a href="https://www.gov.uk/government/consultations/send-review-right-support-right-place-right-time">80% of those sent to pupil referral units</a> are autistic. This has lifelong effects, as <a href="https://lordchrisholmes.com/report-disabled-students-allowance-dsa/">only 8% </a> of students with a “statement of special educational needs” or an education, health & care plan progress to university, compared with 50% of non-disabled people. </p>
<p>For autistic people who do make it to university, the disabled students allowance (DSA) should pay for extra costs – but <a href="https://lordchrisholmes.com/report-disabled-students-allowance-dsa/">less than one-third </a>of eligible students get DSA. In addition, the support provided by universities is often <a href="https://www.tandfonline.com/doi/abs/10.1080/14703297.2020.1850320?journalCode=riie20">poor quality or absent</a>, leaving autistic students disadvantaged.</p>
<p><strong>3. Employment</strong></p>
<p>The UK’s <a href="https://www.legislation.gov.uk/ukpga/2009/15/contents">Autism Act 2009</a> says that autistic people should be supported to be able to work. However, autistic people are <a href="https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/outcomesfordisabledpeopleintheuk/2021">less likely to be in work</a> than non-autistic people. </p>
<p><a href="https://www.gov.uk/access-to-work">Access to work</a> is a UK government scheme to pay disabled people for the extra costs of working, but the application and claiming processes are complicated. Of the 42% of autistic adults who say they need help to access work, <a href="https://s4.chorus-mk.thirdlight.com/file/1573224908/61601577629/width=-1/height=-1/format=-1/fit=scale/t=443899/e=never/k=a402a7d4/nas_appga_report.pdf">only 12% are getting it</a>.</p>
<p><strong>4. Poverty</strong></p>
<p>Autistic people are <a href="https://doi.org/10.1108/AIA-01-2022-0004">more likely</a> to live in poverty than non-autistic people. <a href="https://edm.parliament.uk/early-day-motion/39649/dont-write-me-off-campaign">A 2009 report</a> found one-third of autistic people in the UK were not in paid work or getting benefits. One reason for this is that the benefits designed to stop disabled people living in poverty, such as the personal independence payment (PIP), can be hard to apply for, especially for autistic people. </p>
<p>And for people who manage to apply for PIP, autism falls within the “psychiatric disorders” category, which means they are <a href="https://www.gov.uk/government/statistics/personal-independence-payment-statistics-to-april-2022/personal-independence-payment-official-statistics-to-april-2022#pip-statistics-by-disabling-condition">least likely to receive the award</a> and most likely to lose their PIP upon renewal. </p>
<p><strong>5. Housing</strong></p>
<p>Around <a href="https://www.tandfonline.com/doi/full/10.1080/09687599.2021.2004881">12% of autistic people are homeless</a>. As rent typically costs far more than the amount of money awarded in housing benefit, and autistic people are less likely to be in work or have access to benefits, they are more likely to struggle to pay for housing. </p>
<p>This can be made worse by the “<a href="https://www.disabilityrightsuk.org/resources/bedroom-tax">bedroom tax</a>”, which is when tenants in social housing have their benefit reduced if they have spare bedrooms. This affects <a href="https://www.tandfonline.com/doi/full/10.1080/19491247.2021.1964253">single people under 35</a> especially, as they are only eligible for the <a href="https://england.shelter.org.uk/housing_advice/benefits/benefits_for_under_35s_in_shared_housing">shared accommodation rate</a>. Autistic people can find it hard to live with other people due to their sensory needs, and there are <a href="https://www.tandfonline.com/doi/abs/10.1080/14616718.2014.992681">few one-bedroom properties</a>. </p>
<p>Autistic people who do not have somewhere to live are more likely to be <a href="https://publications.parliament.uk/pa/jt201919/jtselect/jtrights/121/121.pdf.">placed in secure residential care</a>, where they are subjected to similar confines to people in prison, by staff who may have <a href="https://www.autism.org.uk/advice-and-guidance/stories/stories-from-the-spectrum-alexis-quinn">limited understanding of autism</a>. They can also be subjected to clinical “treatment” that has the same <a href="https://catalystjournal.org/index.php/catalyst/article/view/29579/23427">questionable origin</a> as <a href="https://www.stonewall.org.uk/everything-you-need-know-about-conversion-therapy">gay conversion therapy</a>, and which guidance states <a href="https://www.ingentaconnect.com/contentone/bild/ijpbs/2022/00000012/a00101s1/art00001?crawler=true&mimetype=application/pdf">should not be used</a>.</p>
<p>The research supporting this approach, known as applied behaviour analysis (ABA), is often riddled with <a href="https://www.frontiersin.org/articles/10.3389/fpsyg.2021.676303/full">undeclared conflicts of interest</a>. Those who experience ABA have been found to be <a href="https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html">more likely to experience symptoms of post-traumatic stress disorder</a> (PTSD).</p>
<p>Worse, some autistic people in residential care have experienced <a href="https://www.theguardian.com/society/2019/mar/28/parents-of-former-mendip-house-resident-claim-they-were-misled-over-scale-of-abuse">abuse by staff</a>. In the most severe cases, <a href="https://www.theguardian.com/society/2018/may/30/seven-years-winterbourne-view-learning-disabled-people-abuse">autistic people have died</a> due to abusive and/or negligent treatment while in residential care. </p>
<h2>A cumulative impact throughout life</h2>
<p>In every area of government services, we found policies that failed to account for known autistic needs. These failures have a cumulative impact throughout life. A lack of accommodations in education leads to less likelihood of securing accessible employment and greater reliance on benefits and social housing. </p>
<p>To improve this, the policy-making process needs to be made accessible to disabled people so that services meet our needs. This could include ensuring that consultation processes reach out to a broader range of autistic people, and then meet their needs to submit evidence.</p>
<p>It is also important that policy-makers put evidence from the autistic community ahead of evidence provided by non-autistic “experts” who fundamentally misunderstand autism, can have conflicts of interest, and thus can not speak on our behalf. </p>
<p>Autistic lives depend on it.</p><img src="https://counter.theconversation.com/content/202997/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Aimee Grant receives funding from UKRI, the Wellcome Trust and the Research Wales Innovation Fund. We wish to thank Dr Gemma Williams and Richard Woods, co-authors of the chapter this article is based on.</span></em></p><p class="fine-print"><em><span>Kathryn Williams receives funding for her PhD studentship from the Economic and Social Research Council. She is affiliated with Autistic UK CIC, where she is a voluntary non-executive director. </span></em></p>A review of government services has found that autistic people are being failed in health, education, employment, poverty and housing.Aimee Grant, Senior Lecturer in Public Health and Wellcome Trust Career Development Fellow, Swansea UniversityKathryn Williams, PhD Candidate, Cardiff UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2045412023-05-14T20:08:09Z2023-05-14T20:08:09ZAbleism and disablism – how to spot them and how we can all do better<figure><img src="https://images.theconversation.com/files/524849/original/file-20230508-167314-8pa3om.jpg?ixlib=rb-1.1.0&rect=48%2C9%2C6441%2C4310&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com.au/detail/photo/young-woman-laughing-against-red-background-royalty-free-image/1368366693?phrase=disability&adppopup=true">Getty </a></span></figcaption></figure><p>When the 2022 Australian of the Year was announced, <a href="https://www.sbs.com.au/news/article/the-defining-moments-of-dylan-alcotts-time-as-australian-of-the-year/anpkgw2gw">Dylan Alcott</a> wheeled onto the stage. Australian audiences are tuning in to watch TV shows featuring people with disability: <a href="https://iview.abc.net.au/show/you-can-t-ask-that/series/7/video/LE2021H003S00?gclid=EAIaIQobChMIlMCoiYLY_gIVl1l9Ch2plwHkEAAYASAAEgKiC_D_BwE&gclsrc=aw.ds">You Can’t Ask That</a>, <a href="https://iview.abc.net.au/show/love-on-the-spectrum">Love on the Spectrum</a> and <a href="https://iview.abc.net.au/show/employable-me-australia">Employable Me</a>. </p>
<p>The Disability Pride movement is gaining momentum and people with disability are becoming part of the diversity conversation. </p>
<p>On the surface, it would appear we have come a long way in our collective attitudes towards disability. But two of society’s biggest “-isms” still go largely <a href="https://www.abc.net.au/news/2023-02-27/harry-styles-concerts-marvel-stadium-accessibility-chloe-hayden/102025124">unnoticed and unaddressed</a>: ableism and disablism.</p>
<p>What do these terms mean? And how can we all do better to dismantle them?</p>
<h2>Two types of discrimination</h2>
<p>Ableism and disablism both refer to types of disability discrimination. The nuance between the two words can cause confusion but are important for acknowledging, detecting, and dismantling the types of barriers people with disability encounter. </p>
<p><a href="https://www.attitude.org.au/uploads/120/Perspective%20Shift_Series%201_Study%20Guide_Nov_FINAL.pdf">Ableism</a> is discrimination that favours “able-bodied” people, or people without disability. Ableism prioritises the needs of people without disability. A building designed without a ramp or a lift for people who require them, a lack of captions for a meeting, and stadiums without <a href="https://www.smh.com.au/lifestyle/health-and-wellness/what-is-a-sensory-space-and-why-are-they-so-important-20230227-p5cnwy.html">low-sensory spaces</a> are all examples of ableism.</p>
<p><a href="https://www.sense.org.uk/information-and-advice/ableism-and-disablism/">Disablism</a> is the inherent belief that people with disability are inferior to those without disability. It is discrimination against people with disability, like those shared in the <a href="https://disability.royalcommission.gov.au/system/files/2022-03/Issues%20paper%20-%20Rights%20and%20attitudes.pdf">Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability</a>. Disablism can be a more direct, conscious act of discrimination and abuse. Using disability slurs, ignoring someone, or speaking in a patronising way are common examples. </p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/disability-and-dignity-4-things-to-think-about-if-you-want-to-help-198993">Disability and dignity – 4 things to think about if you want to 'help'</a>
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<h2>Ingrained and everywhere</h2>
<p>If we are honest, we can acknowledge ableism and disablism are ubiquitous in our language, our homes, children’s stories, media, at work and in our daily social interactions. Indeed, ableism and disablism can be so ingrained in our daily lives that most people are unaware of them. </p>
<p>Both forms of discrimination can be subtle and insidious, making them difficult to detect and address. They often operate at systemic levels and are not identified as discrimination. </p>
<p>A good example of systemic ableism is the forced segregation of people with disability into <a href="https://disability.royalcommission.gov.au/system/files/2022-03/Issues%20paper%20-%20Education%20and%20learning.pdf">“special” schools or “sheltered” workplaces</a> through limited choice and structural support of these options. Although the process of forcing people into these options no longer occurs in such blatantly disrespectful ways, the result is the same.</p>
<p>Ableist and disablist attitudes are frequently encountered in daily conversation. Subtle ableism manifests in the use of well-intended “empathetic” comments, like “I can’t imagine losing my eyesight. That would be the worst.” These remarks, even when intended to prompt a connection between two people, reveal deep-seated beliefs and create a greater divide. </p>
<p>People with disability, along with other marginalised communities, categorise these types of interactions as “<a href="https://hbr.org/2020/07/when-and-how-to-respond-to-microaggressions">microaggressions</a>”. </p>
<p>Disablist attitudes are more overt. Comments like “If you are unable to walk down the ramp then you shouldn’t have gotten tickets to this concert” demonstrate the low expectations and damaging beliefs that impact on people’s opportunities for education, employment and social interaction.</p>
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Read more:
<a href="https://theconversation.com/what-are-microaggressions-and-how-can-they-affect-our-health-193309">What are microaggressions? And how can they affect our health?</a>
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<h2>Challenging but worth it</h2>
<p>Combating disablism and ableism is a great challenge but one that is worthwhile. A broad spectrum of challenges is at play: confronting and disrupting the status quo, valuing diverse types of knowledge and experience and acknowledging the unconscious biases we all have. </p>
<p>At a systemic and societal level, the way we design and deliver systems, polices, virtual and physical environments, products and experiences need to be co-designed in partnership with people with disability – or better yet, through disability-led initiatives. </p>
<p>Generating new ideas and better ways of working will contribute to improvements in daily life for all people – just like ramps benefit parents pushing prams and people using mobility aids. </p>
<p>The emphasis on <a href="https://anzsog.edu.au/research-insights-and-resources/research/the-promise-of-co-design-for-public-policy/">co-design</a> and engagement with people with disability is <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/1440-1630.12847">increasingly prevalent</a>. However, it is critical to conduct co-design in ways that are not tokenistic and don’t merely validate current practice. Frameworks like the <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/1440-1630.12847">Dignity Project Framework</a>, which includes principles of importance for engaging with people with disability, can better support a dignified process of co-design and citizen partnership.</p>
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<h2>‘Not yet disabled’</h2>
<p>At an individual level, we all have a part to play in creating an inclusive future. </p>
<p>Disability has been called the <a href="https://www.un.org/development/desa/disabilities/resources/factsheet-on-persons-with-disabilities.html">world’s largest minority</a> and is a group any person can join at any time in their life. </p>
<p>The late disability rights activist <a href="https://judithheumann.com/">Judith Heumann</a> preferred to use the term “not yet disabled” to emphasise that we will all experience impairment and disability at some stage. Thus, we may all confront ableism and disablism at some point. The way to prepare for that time is to actively acknowledge and challenge personal biases, learn about and advocate for accessibility and inclusion in the spaces where you live, work and play and amplify the voices of people with disability at every opportunity. </p>
<p>As advocate <a href="https://tiltingthelens.com/about-us/#:%7E:text=As%20a%20passionate%20writer%2C%20podcast,of%20Fashion%2C%20and%20many%20more.">Sinead Burke from Tilting the Lens</a> says in <a href="https://www.vogue.co.uk/article/vogue-disability-portfolio-2023">British Vogue’s</a> May issue, </p>
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<p>Accessibility and disability inclusion is everyone’s responsibility and opportunity. This is a movement, not a moment. And it involves all of us.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/inclusion-means-everyone-5-disability-attitude-shifts-to-end-violence-abuse-and-neglect-199003">Inclusion means everyone: 5 disability attitude shifts to end violence, abuse and neglect</a>
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<img src="https://counter.theconversation.com/content/204541/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Angel Dixon is affiliated with Attitude Foundation.</span></em></p><p class="fine-print"><em><span>Elizabeth Kendall, Katie Kelly, and Kelsey Chapman 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>Disability has been called the world’s largest minority and is a group any person can join at any time in their life. It befits us all to dismantle discrimination.Kelsey Chapman, Research Fellow Dignity Project, Griffith UniversityAngel Dixon, Researcher, Griffith UniversityElizabeth Kendall, Professor, Director, Griffith Inclusive Futures, Griffith University, Griffith UniversityKatie Kelly, Research fellow, Griffith UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1933092023-04-04T01:35:31Z2023-04-04T01:35:31ZWhat are microaggressions? And how can they affect our health?<figure><img src="https://images.theconversation.com/files/511582/original/file-20230222-16-acmbcz.jpg?ixlib=rb-1.1.0&rect=242%2C134%2C5748%2C3233&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://unsplash.com/photos/0VFPFbhuyeY">Hermes Rivera/Unsplash</a></span></figcaption></figure><p>Microaggressions are seemingly innocuous verbal, behavioural or environmental slights against members of minority communities. </p>
<p>The term microaggressions was coined by American psychiatrist <a href="https://www.mghglobalpsychiatry.org/chesterpierce.php">Chester Pierce</a> in his 1970 essay <a href="https://dokumen.tips/documents/offensive-mechanisms-chester-pierce.html?page=1">Offensive Mechanisms</a>. He explained:</p>
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<p>Most offensive actions are not gross and crippling. They are subtle and stunning. The enormity of the complications they cause can be appreciated only when one considers that these subtle blows are delivered incessantly. Even though any single negotiation of offence can in justice be considered of itself to be relatively innocuous, the cumulative effect to the victim and to the victimiser is of an unimaginable magnitude. </p>
</blockquote>
<p>While originally conceived in the context of race relations, microaggressions may also relate to gender, sexual orientation, religion, disability status, weight, or a <a href="https://journals.sagepub.com/doi/full/10.1177/1745691621991855">combination</a> of these. </p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/discrimination-against-fat-people-is-so-endemic-most-of-us-dont-even-realise-its-happening-94862">Discrimination against fat people is so endemic, most of us don’t even realise it’s happening</a>
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<h2>What do microaggressions look like?</h2>
<p>Consider these situations. All are real-life stories from people of colour I know (used with their consent): </p>
<ul>
<li><p>a woman walks into a hairdresser’s shop. The shop is empty and the hairdresser is cleaning hair from the floor. The woman asks if she could get a haircut – if not right now, perhaps another day. The hairdresser says she can’t help as she is not taking on any new customers.</p></li>
<li><p>a man is waiting to pick up his partner in his car, parked on a side street near his partner’s apartment, which is located in a predominantly white suburb. He is minding his own business sitting in his own car. Each time a person walks by, they stare at the man, and keep staring as they walk past.</p></li>
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<em>
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Read more:
<a href="https://theconversation.com/microaggressions-arent-just-innocent-blunders-research-links-them-with-racial-bias-145894">Microaggressions aren't just innocent blunders – research links them with racial bias</a>
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<li>a couple is waiting to order coffee in a busy city cafe. The server is chatty with the white couple ahead of them. When they progress to the front of the line, the server is curt, avoids eye contact, and is eager to move on to the next customer. After placing their order, the couple stands where other patrons had previously waited for their orders. A staff member comes over and asks the couple to wait outside instead.</li>
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<p>Examples of microaggressions towards other identity minorities may include <a href="https://www.ed.ac.uk/equality-diversity/students/microaggressions/lgbtq-microaggressions/trans-and-or-non-binary-microaggressions/commontrans-and-non-binary-based-microaggression">moving away</a> from a trans person on public transport, or not considering wheelchair accessibility needs when booking venues for meetings or events.</p>
<p>Each of these incidents in isolation may not seem particularly harmful, and some may even chalk them up to coincidences or “reading too much into a situation”. </p>
<p>However, when experienced repeatedly, daily, or even multiple times a day, they can harm people’s psychological and physical health.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/hDd3bzA7450?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Microaggressions are like death by a thousand mosquito bites/Fusion Comedy.</span></figcaption>
</figure>
<h2>Microaggressions are subtle</h2>
<p>Microaggressions are often so subtle that even the victim may not realise that they have just experienced one until later – likely because microaggressions are often <a href="https://www.tandfonline.com/doi/abs/10.1080/00107530.2020.1780816">accompanied with dissociation</a> (i.e. disconnection from thoughts, feelings or personal sense of identity). </p>
<p>As psychologist Ron Taffel <a href="https://www.tandfonline.com/doi/abs/10.1080/00107530.2020.1780816">explains</a>, dissociation is a “psychically handy” tool that helps ease the pain,</p>
<blockquote>
<p>making sure that the moment does not fully register or does its damage until a less vulnerable time later – perhaps during a quiet time alone… </p>
</blockquote>
<h2>Microaggressions affect our physical and mental health</h2>
<p>Microaggressions can occur in all environments, from the workplace, to shops, medical clinics, schools, universities, even while walking or parked on the street. So victims often become increasingly self-conscious and <a href="https://www.tandfonline.com/doi/full/10.1080/09518398.2020.1735556">hypervigilant</a>.</p>
<figure class="align-center ">
<img alt="Queer person sits at dinner table" src="https://images.theconversation.com/files/511886/original/file-20230223-16-rqlcac.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/511886/original/file-20230223-16-rqlcac.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/511886/original/file-20230223-16-rqlcac.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/511886/original/file-20230223-16-rqlcac.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/511886/original/file-20230223-16-rqlcac.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/511886/original/file-20230223-16-rqlcac.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/511886/original/file-20230223-16-rqlcac.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">Having to be constantly vigilant is a significant burden.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/m7D2Oz3DqPA">Unsplash/Aiden Frazier</a></span>
</figcaption>
</figure>
<p>The impacts of microaggressions may extend beyond psychological burden and also impact the body’s <a href="https://journals.sagepub.com/doi/full/10.1177/17456916211019944?journalCode=ppsa">physiological state</a>. </p>
<p>When humans perceive a sense of imminent danger, the body’s “<a href="https://scholarworks.lib.csusb.edu/meeting-minds/2018/oral-pres-full/21/">fight, flight, freeze response</a>” is activated. While this is a useful evolutionary mechanism to protect us from physical danger, when triggered frequently – as may be the case with microaggressions – it can take a <a href="https://www.health.harvard.edu/staying-healthy/understanding-the-stress-response">toll on the body</a> and contribute to issues such as high blood pressure, anxiety, depression and addiction. </p>
<p>Racial microaggressions have also been associated with suicide risk. <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/sltb.12150">One study</a> found experiencing race-related microaggressions leads to more symptoms of depression, which in turn increases thoughts of suicide. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-words-matter-the-negative-impacts-of-racial-microaggressions-on-indigenous-and-other-racialized-people-157637">Why words matter: The negative impacts of racial microaggressions on Indigenous and other racialized people</a>
</strong>
</em>
</p>
<hr>
<h2>Microaggressions may deter people from seeking help</h2>
<p>Health issues among victims may be further compounded when microaggressions are experienced in the health-care sector. A <a href="https://psycnet.apa.org/doiLanding?doi=10.1037%2Fa0022251">study from 2011</a> found that sexual orientation-related microaggressions (for example, <a href="https://www.ed.ac.uk/equality-diversity/students/microaggressions/lgbtq-microaggressions/sexuality-based-microaggressions/common-sexuality-based-microaggressions">derogatory comments</a> or assumptions about a person’s sexual orientation) reduced the likelihood of LGBTIQ+ people seeking psychotherapy and impacted their attitudes towards therapy and therapists.</p>
<p><a href="https://www.jabfm.org/content/jabfp/28/2/231.full.pdf">Research</a> involving Indigenous people also suggests microaggressions impact help-seeking behaviours in this group (such as not scheduling or attending regular health-care appointments), which subsequently increases the risk of hospitalisation.</p>
<h2>Indirect effects of microaggressions</h2>
<p>Microaggressions may also impact people’s health status indirectly. <a href="https://www.sciencedirect.com/science/article/pii/S0732118X21000441">Research</a> suggests repeated microaggressions can cause marginalised groups to internalise feelings of inadequacy. </p>
<p>Over time, this internalised oppression may impact their academic and professional success, and consequently socioeconomic status. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/511884/original/file-20230223-26-y7af47.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/511884/original/file-20230223-26-y7af47.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/511884/original/file-20230223-26-y7af47.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/511884/original/file-20230223-26-y7af47.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/511884/original/file-20230223-26-y7af47.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/511884/original/file-20230223-26-y7af47.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/511884/original/file-20230223-26-y7af47.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">Feelings of inadequacy can hold people back.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/concentrated-diverse-colleagues-working-on-laptop-and-brainstorming-4353594/">Pexels/Ketut Subiyanto</a></span>
</figcaption>
</figure>
<h2>Sceptics and victim-blaming</h2>
<p>Sceptics often attribute microaggressions to victims’ “negative emotionality” – a tendency to show negative affect and always feel like a victim. </p>
<p>However, proponents argue that this is a form of <a href="https://journals.sagepub.com/doi/abs/10.1177/17456916211011963">victim-blaming</a> that further compounds the harm caused by microaggressions. </p>
<p>Clinical psychologist Monnica Williams <a href="https://journals.sagepub.com/doi/full/10.1177/1745691619827499">suggests</a> that the years of unchecked microaggressions themselves could be the very thing to cause negativity in marginalised people.</p>
<h2>Victims’ responses to microaggressors</h2>
<p>Victims’ responses to microaggressions can vary among people, and among events experienced by the same person. Victims have to regularly <a href="https://www.tandfonline.com/doi/abs/10.1080/00107530.2020.1780816">decide</a> whether to let it slide or confront the aggressor. </p>
<p>The discourse on microaggressions in social media seems to be on the rise. <a href="https://journals.sagepub.com/doi/full/10.1177/2056305120975716">One study</a> found that there was a drastic increase in the usage of the term “microaggression” on Twitter between 2010 and 2018. Social media discussions and other online spaces may help victims (particularly younger people) to <a href="https://journals.sagepub.com/doi/abs/10.1177/2332649220933307">respond more critically</a> to microaggressors. </p>
<p>Other technological innovations, such as the virtual reality-based intervention <a href="https://partner.equalreality.com/training/unpacking-bias">Equal Reality</a>, are also helping people walk in another’s shoes, recognise unconscious bias, mitigate risk of microaggressions, and promote more inclusive workplaces.</p>
<p><em>If this article has raised issues for you, or if you’re concerned about someone you know, call Lifeline on 13 11 14.</em></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-is-a-name-microaggression-and-could-you-be-doing-it-without-knowing-196272">What is a name microaggression and could you be doing it without knowing?</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/193309/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mahima Kalla 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>While each microaggression may not seem particularly harmful, they add up and can erode the psychological and physical health of people in minority groups.Mahima Kalla, Digital Health Transformation Research Fellow, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1991832023-02-08T19:10:00Z2023-02-08T19:10:00ZBanning straws might be good for the planet – but bad for people with disability or swallowing problems. What is ‘eco-ableism’?<figure><img src="https://images.theconversation.com/files/508758/original/file-20230208-27-abozwz.jpg?ixlib=rb-1.1.0&rect=27%2C20%2C4507%2C3023&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/close-handsholding-plastic-straws-polluting-beach-1370185229">Shutterstock</a></span></figcaption></figure><p>This month, Victoria became the latest Australian state to <a href="https://www.epa.vic.gov.au/about-epa/our-programs-and-projects/single-use-plastics-ban">ban single-use plastics</a>, including straws. While this is a win for the environment and marine life, it will come at a price for social inclusion.</p>
<p>Disposable straws enable many people to safely enjoy drinks without prior planning or assistance. Sustainable alternatives to plastic are available, but these options are <a href="https://www.tandfonline.com/doi/full/10.1080/17549507.2022.2127900">often unsafe or unusable</a> for consumers with complex medical needs. </p>
<p>And while the new ban <a href="https://www.vic.gov.au/single-use-plastics">makes exceptions</a> for people with medical requirements to purchase plastic straws, these items will no longer be accessible at supermarkets, bars, or restaurants without staff assistance. The ban also lacks measures to guarantee continued availability of plastic straws at these venues for people who need them.</p>
<p>Input from the disability community could help Australia wage an effective war against single-use plastics <em>and</em> combat discrimination in the process.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1620534682541588481"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/many-people-have-a-hard-time-swallowing-heres-how-that-affects-their-lives-108426">Many people have a hard time swallowing. Here's how that affects their lives</a>
</strong>
</em>
</p>
<hr>
<h2>Who needs plastic straws – and why?</h2>
<p>Doing away with straws won’t be a big deal for lots of people – but the ban will create new barriers to inclusion for people with disability. Until now, having plastic straws available in public venues has been an affordable and simple accessibility measure. </p>
<p>It’s easy to take the act of drinking for granted, but conditions affecting this delicate task have significant risks to health and well-being. For some people, straws <a href="https://www.tandfonline.com/doi/full/10.1080/17549507.2022.2127900">can reduce choking risk</a> by encouraging a safer posture or controlling the flow of liquid. </p>
<p>By using a straw, many people with disability are able to avoid spills and drink without help or specialist equipment. Straws can also provide relief from mouth ulcers or injury, and can make medications or supplemental nutrition more palatable. </p>
<p>The strategies used by someone who has difficulty drinking are honed through careful trial and error. While some people have found success with sustainable straw designs, none of these currently <a href="https://www.tandfonline.com/doi/full/10.1080/17549507.2022.2127900">match the usefulness or safety benefits</a> of the single-use plastic straw. </p>
<p>Plastic is more durable than paper and cooler than metal, allowing safe, prolonged use with hot or cold liquids. Plastic has a low allergy and sensory profile, and is safer than metal, wood or <a href="https://www.theguardian.com/lifeandstyle/shortcuts/2018/jul/23/suck-it-up-can-pasta-straws-really-replace-plastic-ones">pasta</a> when <a href="https://medical-dictionary.thefreedictionary.com/tonic+bite+reflex">bite reflexes</a> are present. </p>
<p>Finally, reusable straws <a href="https://www.eppa-eu.org/uploads/Bestanden/FINAL%20EPPA%20Report%20-%20Professor%20David%20McDowell.pdf">require careful cleaning to avoid food-borne illness</a>. This can make them a risky and impractical choice for people with restricted movement or fatigue to maintain independently. For these reasons, plastic straws remain simple but critical tools for many in the disability community. </p>
<p>Some sources <a href="https://www.whichbin.sa.gov.au/a-z-items">say</a> plastic straws can be put in recycling bins if they are <a href="https://waster.com.au/how-to-recycle-plastic-drinking-straws/">packed together</a> inside a bottle or container made of the same type of material. Check with your local council. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/508757/original/file-20230208-28-aiaf06.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Person drinking from straw in close up" src="https://images.theconversation.com/files/508757/original/file-20230208-28-aiaf06.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/508757/original/file-20230208-28-aiaf06.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/508757/original/file-20230208-28-aiaf06.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/508757/original/file-20230208-28-aiaf06.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/508757/original/file-20230208-28-aiaf06.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/508757/original/file-20230208-28-aiaf06.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/508757/original/file-20230208-28-aiaf06.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Plastic straws have a better safety profile and less sensory issues than metal or paper ones.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/drink-through-straw-589290371">Shutterstock</a></span>
</figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/plastic-free-campaigns-dont-have-to-shock-or-shame-shoppers-are-already-on-board-98944">Plastic-free campaigns don't have to shock or shame. Shoppers are already on board</a>
</strong>
</em>
</p>
<hr>
<h2>Where does the responsibility lie?</h2>
<p><a href="https://www.vic.gov.au/single-use-plastics">Government material</a> encourages Victorians with disability to carry their own straw to venues, and to seek help in sourcing plastic straws if required. </p>
<p>When a straw is an essential tool for hydration, the weight of this responsibility for individuals is heavy. Forgetting your straw can mean missing out on social drinks, or becoming dehydrated when plans change unexpectedly. And when accessible tools require making a “special request” to venue staff, the risks of stigma and discrimination are high. As disability activist <a href="https://www.eater.com/2018/7/19/17586742/plastic-straw-ban-disabilities">Alice Wong explains</a>, “you never know what attitudes you’ll encounter: indifference, pity, or outright rejection”. </p>
<p>Discrete and affordable accessibility measures are key to <a href="https://dac.berkeley.edu/services/campus-building-accessibility/universal-design-principles">Universal Design</a>. This approach aims to make products and environments usable by all people, to the greatest extent possible, without adaptation.</p>
<p>Such measures are also enshrined in Australia’s <a href="https://humanrights.gov.au/our-work/employers/access-all-improving-accessibility-consumers-disability">Disability Discrimination Act</a>. While complying with the straw ban, businesses can honour this principle by: </p>
<ul>
<li>stocking bendy plastic straws for those who need them</li>
<li>not asking for proof of medical need. This principle also applies to patrons with service animals, mobility devices, and other access requirements </li>
<li>providing and talking about plastic straws in a way that does not stigmatise the people who need them<br></li>
<li>using simple language and pictures to tell people straws are available. Many people with a swallowing disorder also have difficulty with speech or language, so accessible communication is critical. </li>
</ul>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/508748/original/file-20230207-25-8vqj9f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="bundle of plastic straws, each wrapped in clear plastic sleeve" src="https://images.theconversation.com/files/508748/original/file-20230207-25-8vqj9f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/508748/original/file-20230207-25-8vqj9f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=409&fit=crop&dpr=1 600w, https://images.theconversation.com/files/508748/original/file-20230207-25-8vqj9f.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=409&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/508748/original/file-20230207-25-8vqj9f.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=409&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/508748/original/file-20230207-25-8vqj9f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=514&fit=crop&dpr=1 754w, https://images.theconversation.com/files/508748/original/file-20230207-25-8vqj9f.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=514&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/508748/original/file-20230207-25-8vqj9f.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=514&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Victoria has joined other Australian states and territories banning single-use plastic.</span>
<span class="attribution"><a class="source" href="https://photos-cdn.aap.com.au/Image/20180824001358435215?path=/aap_dev9/device/imagearc/2018/08-24/44/32/34/aapimage-71l1en7pkkz13gwnf9jw_layout.jpg">AP/Jeff Chiu</a></span>
</figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/there-are-some-single-use-plastics-we-truly-need-the-rest-we-can-live-without-99077">There are some single-use plastics we truly need. The rest we can live without</a>
</strong>
</em>
</p>
<hr>
<h2>An inclusive approach to sustainability</h2>
<p>The war on straws, and its outsized impact on people with disability, exemplifies a broader phenomenon known as “<a href="https://www.tandfonline.com/doi/abs/10.1080/17524032.2022.2126869">eco-ableism</a>”. </p>
<p>Eco-ableism arises when environmental policy, design, or campaigns discriminate against people with disability. It’s also seen when products like straws, disposable wipes, and pre-cut vegetables <a href="https://journals.sagepub.com/doi/pdf/10.1177/0261018319868362">are publicly vilified</a>, despite being <a href="https://fridaysforfuture.org/newsletter/edition-no-3-ecoableism/">critical</a> to the health and independence of many consumers. </p>
<p>People with disability are not opposed to sustainability. In fact, a <a href="http://www.rica.org.uk/news/lack-accessibility-prevents-disabled-people-reducing-impact-environment">2021 UK survey</a> revealed 93% of respondents with disability were committed to minimising their environmental impacts in the home. But 17% weren’t able to make sustainable consumer choices due to poor accessibility. </p>
<p>The disability community is resourceful and tenacious in the face of adversity. This makes it a <a href="https://www.thevaluable500.com/wp-content/uploads/2022/03/Valuable-500-Global-Trends-Report-Issue-7.pdf">powerful ally</a> and design leader in environmental causes. Inclusive environmentalism harnesses this strength, driving sustainable innovation through collaboration and co-design. </p>
<p>Programs such as <a href="https://stilsolutions.ca/">Sustainability Through an Inclusive Lens</a> (Canada) prove an inclusive approach can deliver powerful wins for the planet and its diverse occupants in tandem. And research consistently shows that inclusive design is <a href="http://www.jacces.org/index.php/jacces/article/view/274">good for business</a> too. </p>
<p>Ultimately, for sustainable practice change that protects fundamental human rights, inclusive environmentalism is Australia’s best shot.</p><img src="https://counter.theconversation.com/content/199183/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Darryl Sellwood needs to use plastic straws to drink due to his physical disability. </span></em></p><p class="fine-print"><em><span>Kate Anderson does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The war on straws is an example of ‘eco-ableism’ – when environmental measures create an extra burden on people with disability.Kate Anderson, Associate Head of School, Teaching and Learning (Health, Disability & Inclusion), Deakin UniversityDarryl Sellwood, Research Associate, College of Nursing and Health Sciences, Flinders UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1931952023-01-05T18:28:56Z2023-01-05T18:28:56ZWhat exactly is ‘neurodiversity?’ Using accurate language about disability matters in schools<figure><img src="https://images.theconversation.com/files/502956/original/file-20230103-16-mdp400.jpg?ixlib=rb-1.1.0&rect=0%2C102%2C5248%2C3142&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The term 'neurodiversity' comes from autistic communities and means that all brains and 'bodyminds' work in diverse ways. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>The connection between language and meaning has been <a href="https://www.britannica.com/science/semiotics">well established</a>. The language we use is directly related to the way we <a href="https://news.stanford.edu/2019/08/22/the-power-of-language-how-words-shape-people-culture/">view and treat others</a>. Inclusive language is imperative to achieve equitable change, grounded in human rights and social justice. </p>
<p>Many countries today have laws protecting against the use of any language that <a href="https://laws-lois.justice.gc.ca/eng/acts/c-46/section-319.html">incites or wilfully promotes hatred</a> against an identifiable group. </p>
<p>Many <a href="https://www.york.ca/newsroom/york-region-launches-inclusive-language-guide">municipalities</a>, <a href="http://www.mbteach.org/pdfs/news/MTS_InclusiveLanguageBooklet_ENG.pdf">organizations</a> and <a href="https://www.ddsb.ca/en/about-ddsb/resources/Documents/Equity/Guidelines-Inclusive-Language.pdf">school boards</a> have established inclusive language guides. </p>
<p>Although the scope of these laws vary, what they have in common is recognizing <a href="https://www.routledge.com/Disability-Hate-Speech-Social-Cultural-and-Political-Contexts/Sherry-Olsen-Vedeler-Eriksen/p/book/9781032086057">the gravity of language</a>. </p>
<p>And yet, who decides on the right words? My research has considered this question <a href="https://www.iheartradio.ca/virginradio/winnipeg/more/ace-burpee-s-top-100-most-fascinating-manitobans-for-2022-1.18968619">with regards to disability</a> in kindergarten to Grade 12 education.</p>
<h2>A community’s own expertise</h2>
<p>Preferences regarding disability-related language are established by <a href="https://news.vanderbilt.edu/2019/04/23/disability-is-not-a-dirty-word-handi-capable-should-be-retired/">the disability community</a>. </p>
<p>These preferences are distilled over time through an ebb and flow of factors including advocacy and allyship, grassroots activism, legal and legislative proceedings and <a href="https://www.britannica.com/topic/disability-studies">empirical research</a>. </p>
<p>In Canada, <a href="https://www.justice.gc.ca/eng/csj-sjc/rfc-dlc/ccrf-ccdl/check/art15.html">the Canadian Charter of Rights and Freedoms</a> guarantees the rights of individuals by enshrining those rights, and certain limits on them, in the <a href="https://www.thecanadianencyclopedia.ca/en/article/canadian-charter-of-rights-and-freedoms#:%7E:text=The%20Charter%20of%20Rights%20and,highest%20law%20of%20the%20land.">highest law of the land</a>. The Charter protects against discrimination, including disability hate speech. </p>
<p>Internationally, the United Nations Convention on the Rights of Persons with Disabilities <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html">(UNCRPD)</a>, of which Canada is a primary signatory, aims to protect the rights and dignity of persons with disabilities without discrimination <a href="https://www.international.gc.ca/world-monde/issues_development-enjeux_developpement/human_rights-droits_homme/rights_disabilities-droits_handicapees.aspx?lang=eng">and on an equal</a> basis with others. Parties to the UNCPRD are required to promote and ensure the full enjoyment of human rights for people with disabilities, including full equality under the law. </p>
<p>Terminology about any community must reflect their autonomy, preference and ideals. </p>
<p>The disabled community has been subjected not only to paternalism <a href="https://www.thecanadianencyclopedia.ca/en/article/eugenics">but also eugenics</a>.
Policymakers <a href="https://www.youtube.com/watch?v=ERNYuvolaFU">across society</a> have ignored their inherent expertise. </p>
<h2>Systemic ableism in schools</h2>
<p>In a recent study involving adults with disabilities reflecting on their experiences in <a href="https://doi.org/10.1177/0888406421996069">kindergarten to Grade 12 education</a> in the United States, researcher
Carlyn O. Mueller found schools continue to lag behind in terms of:</p>
<ul>
<li>a lack of disability representation in K-12 curriculum;</li>
<li>a lack of disability community in K-12 schools;</li>
<li>a lack of school staff with disabilities.</li>
</ul>
<figure class="align-center ">
<img alt="A father and son seen standing in shirts that say 'Let him play' and 'Let me play.'" src="https://images.theconversation.com/files/502847/original/file-20230102-22-e06q44.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/502847/original/file-20230102-22-e06q44.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=578&fit=crop&dpr=1 600w, https://images.theconversation.com/files/502847/original/file-20230102-22-e06q44.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=578&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/502847/original/file-20230102-22-e06q44.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=578&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/502847/original/file-20230102-22-e06q44.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=727&fit=crop&dpr=1 754w, https://images.theconversation.com/files/502847/original/file-20230102-22-e06q44.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=727&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/502847/original/file-20230102-22-e06q44.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=727&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Schools need to factor disabled students into mainstream planning so families like Dean Dompierre, left, and his son, Eric Dompierre, pictured here at a 2012 state Senate committee hearing, in Lansing, Mich., don’t have to fight for particular accommodations.</span>
<span class="attribution"><span class="source">(AP Photo/Al Goldis)</span></span>
</figcaption>
</figure>
<p>These findings remain consistent today with what I have observed <a href="https://www.canadashistory.ca/education/lesson-plans/teaching-about-disability-in-your-classroom">about systemic ableism in Canadian schools</a> and in current research in the field of inclusive education and <a href="https://doi.org/10.1080/09687599.2022.2071679">disability studies</a>.</p>
<p>Kindergarten to Grade 12 schooling is <a href="https://briarpatchmagazine.com/articles/view/exiting-the-revolving-door">often stigmatizing</a> for students with disabilities. <a href="https://www.routledge.com/Disability-Hate-Speech-Social-Cultural-and-Political-Contexts/Sherry-Olsen-Vedeler-Eriksen/p/book/9781032086057">Ableist slurs</a> continue, and segregationist practices abound while disability representation in staff, programming and curriculum remains limited at best. </p>
<h2>A community</h2>
<p>The disability community is the largest <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8964271/">diversity-equity group globally</a>. It’s also one that many of us will join throughout our lifetime. </p>
<p>It is important to remember disability is not synonymous with notions of lacking, charity or pity. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/think-disability-is-a-tragedy-we-pity-you-82047">Think disability is a tragedy? We pity you</a>
</strong>
</em>
</p>
<hr>
<p>Nor do disabled people need to be fixed through interventions. Rather, disability <a href="https://www.who.int/health-topics/disability">is part of the human experience</a>.</p>
<p>Moving away from derogatory terms, such as <a href="https://cognitiveresearchjournal.springeropen.com/articles/10.1186/s41235-016-0025-4">“special”</a> and “exceptional” is important. This promotes positive representation for people within the disability community, and respects their human rights.</p>
<p>Human rights perspectives stress that our society <a href="https://www.ohchr.org/sites/default/files/Documents/Publications/CRPD_TrainingGuide_PTS19_EN_Accessible.pdf">recognizes and names disability</a> as the consequence of a person interacting with an environment that does not accommodate their differences.</p>
<p>This lack of accommodation impedes participation in society. Inequality is due to the inability of society to eliminate barriers challenging persons with disabilities. </p>
<figure class="align-center ">
<img alt="A child seen practising signing in a classroom." src="https://images.theconversation.com/files/502851/original/file-20230102-70116-iv3oat.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/502851/original/file-20230102-70116-iv3oat.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/502851/original/file-20230102-70116-iv3oat.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/502851/original/file-20230102-70116-iv3oat.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/502851/original/file-20230102-70116-iv3oat.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/502851/original/file-20230102-70116-iv3oat.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/502851/original/file-20230102-70116-iv3oat.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">Children learning sign language at school could be one example of how schools could be part of a societal commitment to eliminate barriers affecting Deaf people. Here, a child learns sign language in a school classroom in Sarajevo, Bosnia, in 2016.</span>
<span class="attribution"><span class="source">(AP Photo/Amel Emric)</span></span>
</figcaption>
</figure>
<h2>Some terminology</h2>
<p>The following is some terminology that schools and communities can use to promote inclusivity: </p>
<p><strong>Neurodiversity and neurodivergence:</strong> <a href="https://doi.org/10.1177/136236131882076">Neurodiversity</a>, originating in the autism community, reflects the notion that all <a href="https://cdsc.umn.edu/cds/terms">“bodyminds”</a> work in diverse ways. As noted by the <a href="https://cdsc.umn.edu/cds/terms">Critical Disability Studies Collective at University of Minnesota</a>, the terms neurodiversity and neurodivergence “come from autistic communities, who have welcomed folks with other marginalized brain/bodyminds to use them, including but not limited to people with cognitive, brain injury, epilepsy, learning and mental health disabilities.” </p>
<p><a href="https://www.forbes.com/sites/andrewpulrang/2020/10/25/words-matter-and-its-time-to-explore-the-meaning-of-ableism/?sh=254410277162"><strong>Ableism</strong></a> advances the belief that “typical” abilities are normal and superior. Ableism assumes disabled people need to be fixed and an ableist attitude defines people as lesser while including harmful stereotypes about disabilities. Ableism often leads to discriminatory beliefs, attitudes and actions often resulting in segregationist and exclusionary measures.</p>
<p><strong><a href="https://eugenicsarchive.ca/discover/encyclopedia/535eeb407095aa000000021c">The medical model of disability</a></strong> says people are disabled by their impairments or differences. Under the medical model, impairment is equated with being broken and in need of a fix. Even when the impairment or difference does not cause pain or illness, the individual is considered lesser. The medical model lens can lead to stigma and may be considered a prelude to ableism. </p>
<p><strong><a href="https://doi.org/10.1080/09687599.2013.818773">The social model of disability</a>:</strong> Created by disabled people, the social model argues humans naturally come in a variety of bodyminds, which are changed and shaped by our environment. Disability is part of the human experience. The social model argues that nothing is wrong with the disabled bodymind but that inaccessible structures, systems and attitudes of society are the issue that need fixing. The social model sets the foundation for equitable approaches for inclusion. </p>
<p><strong><a href="https://www.nytimes.com/2017/12/06/opinion/doctor-wheelchair-disability.html">Wheelchair user</a>/<a href="https://www.press.umich.edu//164083">rider</a>:</strong> Those who use a wheelchair. </p>
<p>Educators, scholars, and allies must demand disability-appropriate terminology and representation in all K-12 schools.</p><img src="https://counter.theconversation.com/content/193195/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michael Baker 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>Language used to speak about disability changes over time, and preferences shift due to advocacy and allyship, legal proceedings and empirical research.Michael Baker, PhD Candidate & Sessional Lecturer, Faculty of Education, University of ManitobaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1883272022-08-12T13:19:36Z2022-08-12T13:19:36ZUniversities shouldn’t use software to monitor online exams: here’s why<figure><img src="https://images.theconversation.com/files/478930/original/file-20220812-26-i7rj1p.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">FluxFactory/Getty Images</span></span></figcaption></figure><p>Proctoring software monitors a student’s computer or phone while they write exams. These programs have been around for some time but became ubiquitous during online learning in the pandemic.</p>
<p>Proctoria, Respondus and Proctor U, the most popular programs, have enjoyed <a href="https://www.eff.org/deeplinks/2021/06/long-overdue-reckoning-online-proctoring-companies-may-finally-be-here">a 500% increase</a> in usage since the start of COVID-19 and proctoring software is now a <a href="https://brownpoliticalreview.org/2020/12/big-ed-tech-is-watching-you-privacy-prejudice-and-pedagogy-in-online-proctoring/">US$19 billion global market</a>. </p>
<p>Some proctoring programs work by checking that the student has only the test software and no other programs open; others monitor keystrokes. Some use the computer’s camera or cellphone audio to check that the student is working alone. A number of South African universities have taken up <a href="https://www.unisa.ac.za/sites/corporate/default/Colleges/Economic-and-Management-Sciences/News-&-events/Articles/Unisa-pilots-proctoring-tools-for-2nd-online-exam">cellphone monitoring</a> programs.</p>
<p>But this software is not innocuous.</p>
<p>I argue in a <a href="https://www.tandfonline.com/doi/full/10.1080/14767430.2022.2100612">recent article</a> that the uptake of proctoring software is a symptom of a much larger problem.</p>
<p>Universities have neglected their educational responsibilities in service of a neoliberal ideology. This positions students as customers and higher education as a business. It’s a problem because when universities become businesses selling qualifications, it narrows their potential to be places where students enjoy transformative relationships with knowledge, and where knowledge is created to serve people and the planet. </p>
<p>The ability to memorise information and regurgitate it within a short time limit is required in only a small handful of situations. What most students need is to understand how knowledge is made in their field of study, what contributions that field makes to society, and how they can source and evaluate information to answer questions and <a href="https://theconversation.com/how-school-maths-could-better-prepare-south-africans-for-the-world-of-work-147394">resolve problems</a>. They need to learn how to be <a href="https://theconversation.com/education-needs-a-refocus-so-that-all-learners-reach-their-full-potential-154649">ethical, critical citizens</a>. </p>
<p>Assessment directed towards such ends looks very different from current practices, which are obsessed with both memorisation and cheating.</p>
<h2>What’s wrong with proctoring</h2>
<p>Proctoring raises three issues of concern: privacy, racism and ableism.</p>
<p><strong>Privacy:</strong> Those selling the software insist that students give consent to its use. But if students don’t, they are excluded from the exam. Universities have ethics committees to make sure their researchers don’t use such coercive tactics and yet they use them on students. Researchers have to ensure that potential participants fully understand a study’s potential risks and benefits before they can offer informed consent. </p>
<p>The invasiveness of the software is <a href="https://www.theverge.com/2020/10/22/21526792/proctorio-online-test-proctoring-lawsuit-universities-students-coronavirus">well documented</a> and many scholars have said it has most of the characteristics of <a href="https://www.forbes.com/sites/seanlawson/2020/04/24/are-schools-forcing-students-to-install-spyware-that-invades-their-privacy-as-a-result-of-the-coronavirus-lockdown/?sh=6db401d9638d">illegal spyware</a>. </p>
<p>Allowing a stranger to listen in on a student’s family home as they write a test is surely an indication that it’s the wrong way of doing assessment. </p>
<p><strong>Racism of facial recognition software:</strong> Whether it is the photo tagging suggestions of social media, border security systems, or proctoring software, <a href="https://arxiv.org/abs/2010.07023">facial recognition</a> remains poor at recognising people <a href="https://quod.lib.umich.edu/t/tia/17063888.0039.308?view=text;rgn=main">with darker skin</a>. The artificial intelligence that compares the face on the student card to the person in front of the computer camera is far more likely to <a href="https://jitp.commons.gc.cuny.edu/toward-abolishing-online-proctoring-counter-narratives-deep-change-and-pedagogies-of-educational-dignity/">flag a suspicion</a> if that student is black than if they are white.</p>
<p><strong>Ableism of facial recognition:</strong> Anyone with a body shape that does not meet the program’s expectations can find themselves flagged as suspicious. This includes the tics and stimming of people with Tourette’s syndrome, cerebral palsy, Huntington’s syndrome and autism.</p>
<p>Many American universities have now opted out of proctoring software in response to protests by academics and students.</p>
<p>But opting out attends to the symptom – universities spying on their students – and not to the causes of such activities.</p>
<h2>Neoliberal ideology</h2>
<p>The underlying cause is that many universities around the world have taken on a <a href="https://www.britannica.com/topic/neoliberalism">neoliberal ideology</a>, whereby the worth of any person, object, creature or activity is thought to be measurable in terms of its contribution to the economy.</p>
<p>A neoliberal university believes, firstly, that it is a business in the knowledge market. In commercialising education, universities <a href="http://www.cilt.uct.ac.za/cilt/projects/uct-leeds">increasingly outsource educational activities</a> – such as monitoring examinations using proctoring software. </p>
<p>When Ian Linkletter, an educational technologist at the University of British Columbia in Canada, tweeted criticisms of the proctoring software used in his university, <a href="https://www.theverge.com/2020/10/22/21526792/proctorio-online-test-proctoring-lawsuit-universities-students-coronavirus">he was sued</a> by the company. The market cannot allow the critical engagement that should be at the heart of a university.</p>
<p>Secondly, the neoliberal university treats the student as a customer. In a world where knowledge is packaged and sold as a commodity, software companies convince universities that their product, the qualifications they award, can be devalued if they are not policed. </p>
<p>In such an understanding of the university, proctoring software makes sense.</p>
<p>It should come as no surprise that students are quickly learning <a href="https://www.vice.com/en/article/3an98j/students-are-easily-cheating-state-of-the-art-test-proctoring-tech">to game the system</a>. The internet is replete with tips on how to confuse the software and get assistance online even while the software is running.</p>
<p>The third characteristic of neoliberal ideology is that power is accorded along lines of <a href="https://theconversation.com/education-and-inequality-in-2021-how-to-change-the-system-158470">wealth</a>. This characteristic is also in evidence in most universities worldwide. The university, as a relatively wealthy institution, has the power to implement invasive technology without much challenge. The average student must simply comply.</p>
<h2>Universities for the common good</h2>
<p>It becomes impossible to implement proctoring software if the conception of the university is that it is a social structure that contributes powerful, principled knowledge in service of people and the planet.</p>
<p>Such a social structure would need to expend significant energy in inducting students into their role as knowledge creators and encouraging them to take on this identity responsibly. This would require shifts in how academics interact with students and articulate the purpose of a higher education to students and the public. It would also require a rethink of the form and function of assessment.</p><img src="https://counter.theconversation.com/content/188327/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sioux McKenna 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>Proctoring software is a symptom of a bigger problem: universities see themselves as businesses and students as customers.Sioux McKenna, Director of Centre for Postgraduate Studies, Rhodes University & Visiting Research Professor in Center for International Higher Education, Boston College, Rhodes UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1871092022-07-19T13:07:35Z2022-07-19T13:07:35ZLove Island’s Tasha is the show’s first deaf contestant – here’s what you should know about deaf accents<figure><img src="https://images.theconversation.com/files/474830/original/file-20220719-20-fbzwr5.jpg?ixlib=rb-1.1.0&rect=11%2C182%2C3791%2C5516&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Tasha Ghouri is the first deaf Islander on the popular ITV show.</span> <span class="attribution"><a class="source" href="https://www.itv.com/presscentre/itvpictures/galleries/islanders-itv2-generic">ITV / Lifted Entertainment</a></span></figcaption></figure><p>I sat down to watch the first episode of this year’s Love Island with my daughter as I was told that there was a deaf contestant appearing on the show. I don’t usually watch Love Island, but as a deaf person I was intrigued to find out more about how this contestant, Tasha Ghouri, would handle being the only deaf person on the show. </p>
<p>I asked my daughter, who is hearing, whether or not she could hear that Ghouri was deaf – she seemed to be communicating with her hearing peers with complete ease. My daughter replied: “I can hear the deaf in her voice.” This was not surprising, as several members of my family are deaf and I socialise mainly with deaf people. My daughter is highly familiar with what we, deaf people, call, “deaf accent”, also known to researchers as “deaf speech”. </p>
<p>Sadly, a few weeks into the show, there has been a wave of online trolling and abuse <a href="https://graziadaily.co.uk/celebrity/news/love-island-tasha-ghouri-trolling-deaf/">directed at Ghouri</a>. Much of this has focused on her cochlear implant – an electronic device that allow some deaf people to hear and process speech (this varies greatly among deaf people) – and her accent.</p>
<p>An accent refers to people’s voice quality, intonation and their pronunciation of both vowels and consonants. In general, people tend to have an accent when speaking that reflects their gender, ethnicity, social class, age and their region or country of origin (among other factors). Other linguistic differences in vocabulary and grammar are known as dialects, and relate to the same social factors as accents. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-were-searching-england-for-new-dialects-181897">Why we're searching England for new dialects</a>
</strong>
</em>
</p>
<hr>
<p>Accents may also indicate that a person has a disability, including deaf people. “Deaf accent” occurs because deaf people are often unable to hear the full range of sounds that hearing people hear. This means that they are not always able to replicate the full range of sounds in spoken words. Speech also has various tones or intonation patterns that deaf people may also be unable to hear, thus they do not replicate those. There is a high degree of variability in deaf accents simply because every deaf person is different, with some who are mildly deaf and others who are profoundly deaf. </p>
<p>Quite often, deaf people undergo speech therapy (whether they want to or not) during their school years to learn how to pronounce sounds and words they’re unable to hear. Many deaf people have quite <a href="https://www.handspeak.com/learn/index.php?id=371">negative experiences</a> of speech therapy. For deaf people, learning to speak and using speech can be quite a conscious and laborious process. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/eCXAUATESfE?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
</figure>
<p>In addition to a deaf accent, it is quite possible for a deaf person to have a regional accent, depending on how deaf they are. Deaf people from different parts of the country, like hearing people, can sound different from one another when they speak. </p>
<p>As well as having varying accents, deaf people frequently comment that they can “see” accents, because different sounds may appear different on the lips. In a <a href="https://www.degruyter.com/document/doi/10.1515/applirev-2020-0144/html">recent study</a>, deaf people mentioned that mouthing varied in different parts of the country. This shows that deaf people are aware of differences in accents, giving examples such as how the word “bath” looks differently articulated by deaf people from the north and south of England. </p>
<h2>‘Accents’ in sign language</h2>
<p>Many deaf people in the UK use British Sign Language (BSL). Like spoken English, there is a high degree of variability, depending on social factors. Technically, there is <a href="https://www.degruyter.com/document/doi/10.1515/applirev-2020-0144/html">little evidence</a> for accent in sign languages – that is, systematic variation in pronunciation in signs such as their handshape or other formational features – related to social factors such as region.</p>
<p>But there is definitely widespread lexical variation, with different signs used for a given concept. This is similar to differences in dialect in spoken English,
like the <a href="https://www.bl.uk/british-accents-and-dialects/articles/lexical-variation-across-the-uk">different words for the shoes</a> that British children wear for PE. </p>
<p>We found in <a href="https://www.degruyter.com/document/doi/10.1515/applirev-2020-0144/html">our research</a> that BSL signers tend to equate this lexical variation with accent. We think this is because this variation is very noticeable, and marks regional identity in BSL in the same way that accents do in spoken languages. For example, <a href="https://bslsignbank.ucl.ac.uk/dictionary/regional/sixteen-1.html">signs for numbers</a> can vary greatly.</p>
<p>Importantly, we found in the same study that BSL signers place a high value on the regional variation in BSL. It’s part of what makes it a rich language, on equal footing with English, the surrounding majority language. The contestants on Love Island come from all over the UK and the world. In this season alone, there is accent variation from London, Newcastle, Wales, Italy and Essex, to name a few – Tasha’s accent is just another example of the rich diversity in English accents.</p><img src="https://counter.theconversation.com/content/187109/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kate Rowley receives funding from the Economic and Social Research Council (ESRC). She works for University College London (UCL) and has her own freelance business (Language Wise). </span></em></p>Deaf people from different parts of the world can have different accents, whether they speak, sign or both.Kate Rowley, Lecturer in Deafness, Cognition and Language, UCLLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1766642022-03-10T01:51:25Z2022-03-10T01:51:25ZWhat the ‘let it rip’ COVID strategy has meant for Indigenous and other immune-compromised communities<p>After a year and a half of lockdowns, border closures, mask-wearing and social distancing, and the vaccine rollout, Prime Minister Scott Morrison has shifted to what is essentially a <a href="https://7news.com.au/lifestyle/health-wellbeing/australia-went-from-zero-covid-to-let-it-rip-exactly-how-successful-has-it-been-c-5336227">“let it rip”</a> pandemic approach. </p>
<p>This is a push from the government to “open up” and get “back to normal.” However, since this approach was taken, it has led to Omicron spreading at <a href="https://theconversation.com/from-covid-control-to-chaos-what-now-for-australia-two-pathways-lie-before-us-174325">increased rates</a> across the country. </p>
<p>This shift to “learning to live with the virus” makes life harder and <a href="https://www.sydneycriminallawyers.com.au/blog/letting-covid-rip-condemns-the-vulnerable-to-ensure-market-wellbeing">more dangerous</a> for vulnerable groups such as First Nations people, people living with disability, the elderly, those with chronic conditions and those who are immuno-compromised. Refugees and migrants <a href="https://www.theguardian.com/australia-news/2022/feb/17/covid-death-rate-three-times-higher-among-migrants-than-those-born-in-australia">are at also at higher risk</a> of serious illness and death from COVID.</p>
<p><a href="https://www.sydneycriminallawyers.com.au/blog/letting-covid-rip-condemns-the-vulnerable-to-ensure-market-wellbeing/">Experts warn</a>:</p>
<blockquote>
<p>As the virus moves into vulnerable populations, such as older Australians, people with disability and Aboriginal and Torres Strait Islander people […] we may see a rise in hospitalisations and death.</p>
</blockquote>
<p>This way of thinking was especially prevalent in the discourse around the release of the <a href="https://www.abs.gov.au/articles/covid-19-mortality-australia">Australian Bureau of Statistics COVID-19 mortality report</a>. As reported in <a href="https://www.theguardian.com/australia-news/2022/feb/23/australian-bureau-of-statistics-report-on-covid-deaths-misrepresented-by-rightwing-media?utm_term=Autofeed&CMP=soc_568&utm_medium=Social&utm_source=Twitter#Echobox=1645569159">The Guardian</a>, some media stated or implied COVID doesn’t kill enough “healthy” people for it to be considered harmful, thus <a href="https://theconversation.com/australia-is-failing-marginalised-people-and-it-shows-in-covid-death-rates-177224">assigning lower value</a> to certain lives.</p>
<p>For example Joe Hildebrand <a href="https://www.news.com.au/world/coronavirus/australia/end-of-restrictions-exposes-senseless-covid-scaremongering/news-story/e84643e7f745d3745f08065791419dd3">wrote in an op-ed for news.com.au</a>:</p>
<blockquote>
<p>…not only did so-called “COVID deaths” account for just 1% of fatalities during the pandemic, but 92% of that 1% were people with pre-existing health problems ranging from pneumonia to heart disease.</p>
</blockquote>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/getting-vaccinated-is-the-act-of-love-needed-right-now-to-support-the-survival-of-aboriginal-and-torres-strait-islander-peoples-during-the-pandemic-169245">Getting vaccinated is the act of love needed right now to support the survival of Aboriginal and Torres Strait Islander peoples during the pandemic</a>
</strong>
</em>
</p>
<hr>
<h2>“Living with COVID” doesn’t include everyone</h2>
<p>In Australia, there are people with compromised immune systems who because of a chronic illness, can’t be vaccinated. There are also some people whose bodies won’t respond to COVID vaccines either because of medications for ongoing treatments, or co-morbidities that impact their immune system.</p>
<p>Even if people with chronic illness do get vaccinated, their compromised immune systems mean there is <a href="https://www.science.org/content/article/covid-19-vaccines-may-protect-many-not-all-people-suppressed-immune-systems">no certainty</a> they would be protected from COVID.</p>
<p>The Australian Institute of Health and Welfare <a href="https://www.indigenoushpf.gov.au/getattachment/65fbaaf3-100c-4df5-941c-a8455922693c/2020-summary-ihpf-2.pdf">report</a> Aboriginal and Torres Strait Islander people are impacted by disease 2.3 times more than non-Indigenous Australians.</p>
<p>GP and Epidemiologist Dr Jason Agostino from Australian National University <a href="https://www.naccho.org.au/first-nations-adults-at-risk-from-severe-illness-after-covid-anu-research/">said</a>:</p>
<blockquote>
<p>there are almost 300,000 Aboriginal and Torres Strait Islander adults who are at higher risk of getting very sick if they are not vaccinated and get COVID-19.</p>
</blockquote>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1497490507517202432"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/australia-is-failing-marginalised-people-and-it-shows-in-covid-death-rates-177224">Australia is failing marginalised people, and it shows in COVID death rates</a>
</strong>
</em>
</p>
<hr>
<h2>How First Nations communities are still being left behind</h2>
<p>Before the pandemic, Aboriginal people faced <a href="https://www.mja.com.au/journal/2021/214/5/indirect-impacts-covid-19-aboriginal-communities-across-new-south-wales#1">health disadvantages</a> and inequitable access to health care. This has worsened since the pandemic. One of the significant issues has been access to affordable food during the pandemic, increased vulnerability of homeless Indigenous people during lockdowns, lack of ability to self-isolate at home and lack of access to community healthcare. </p>
<p>The pandemic has also been disruptive to communities not being able to see one another because of <a href="https://www.mja.com.au/journal/2021/214/5/indirect-impacts-covid-19-aboriginal-communities-across-new-south-wales">public health concerns</a>. This impacts community approaches to health care, cultural practices, and connection to Country.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1498062176510443520"}"></div></p>
<p>Some Indigenous communities also have limited access to health services and need to be better informed by health workers from their own communities about testing and vaccination. This was proven successful by stories such as in Arnhem Land, Mala'la Health Service’s chairman Uncle Charlie Gunabarra travelled around remote communities sharing information about the COVID-19 vaccine. This led to a <a href="https://www.abc.net.au/news/2021-03-06/nt-maningrida-health-clinic-handed-to-aboriginal-control/13216290">significant increase</a> in vaccinations.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/covid-in-wilcannia-a-national-disgrace-we-all-saw-coming-167348">COVID in Wilcannia: a national disgrace we all saw coming</a>
</strong>
</em>
</p>
<hr>
<h2>What needs to happen</h2>
<p>A <a href="https://www.naccho.org.au/first-nations-adults-at-risk-from-severe-illness-after-covid-anu-research/">study</a> by the Australian National University, the National Aboriginal Community Controlled Health Organisation, the Royal Australian College of General Practitioners and the Lowitja Institute reinforces that First Nations people “must remain a priority group” for Australia’s COVID-19 pandemic response. </p>
<p>In this study, Dr Tanya Schramm from the Royal Australian College of General Practitioners said:</p>
<blockquote>
<p>Improving access to social determinants such as housing and healthcare will reduce the risk of severe illness from COVID-19 among Aboriginal peoples, and this must occur alongside ongoing care and management of chronic conditions and efforts to increase vaccination coverage.</p>
</blockquote>
<p>There have been efforts to overcome access to health services during the pandemic through telehealth and online healthcare options. However, there are challenges accessing these services such as limited access to phone, computer literacy and internet coverage. This also impacts refugee and migrant communities.</p>
<p>Despite Scott Morrision’s <a href="https://7news.com.au/lifestyle/health-wellbeing/australia-went-from-zero-covid-to-let-it-rip-exactly-how-successful-has-it-been-c-5336227">statement</a> “We’re now at a stage of the pandemic where you can’t just make everything free,” not everyone can afford to buy rapid antigen tests. Although there are recent initiatives in place to make these available to concession card holders and to the WA population, these tests need to be free for all.</p>
<p>Ableism is complex, harmful, and the COVID-19 pandemic response has amplified harm to priority groups. In order to address this, the government needs to better include First Nations communities in their COVID-19 strategies going forward. This can be done by providing resources to Aboriginal community controlled health organisations in regional and remote areas, as recommended by the <a href="https://www.health.gov.au/health-alerts/covid-19/support">Australian Department of Health</a>. </p>
<p>Better government support to and communication with First Nations people and their health centres can minimise misinformation and fear around the virus and vaccine. This could also provide much better access to health care, vaccines and rapid antigen tests. </p>
<p>As Western Australia opens up, some remote Indigenous communities and aged care facilities have been placed into lockdown, we need to find better ways to support vulnerable communities when addressing COVID-19 in Australia.</p><img src="https://counter.theconversation.com/content/176664/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>As a Global Public Health researcher, Jaya Dantas has been mapping the Global COVID-19 pandemic especially as it impacts vulnerable populations, developing countries, social determinants and vaccine equity. She is currently involved with two projects in Western Australia focussing on COVID-19. She is part of a team funded by WA Future Health Research and Innovation Fund - 'Quantifying contact networks for COVID-19 outbreak and leading a second project funded by Healthway that will examine the impact of COVID-19 and domestic violence on CALD communities. Jaya is the International SIG Convenor of the Public Health Association of Australia and is on the Global Gender Equality in Health Leadership Committee for Women in Global Health, Australia.</span></em></p><p class="fine-print"><em><span>Cheryl Davis is Director of Indigenous Engagement in the Faculty of Health Sciences at Curtin University and in this role supports Indigenous students currently studying health disciplines. She is affiliated with Derbarl Yerrigan Health Service and South West Aboriginal Land & Sea Council as a community member, is undertaking a PhD in Indigenous higher education and is also a member of the Australian Health Promotion Association.</span></em></p>The government has decided it’s time for Australia to open up and get “back to normal.” This has made life more dangerous for vulnerable groups such as First Nations people.Jaya Dantas, Deputy Chair, Academic Board; Dean International, Faculty of Health Sciences and Professor of International Health, Curtin UniversityCheryl Davis, Director of Indigenous Engagement - Curtin University, Indigenous KnowledgeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1676882021-09-15T21:54:14Z2021-09-15T21:54:14ZThe next national apology: Future Canadians might regret expansion of medically assisted dying laws<figure><img src="https://images.theconversation.com/files/421440/original/file-20210915-24-132d0f9.jpg?ixlib=rb-1.1.0&rect=2706%2C100%2C3993%2C2132&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Originally, medical assistance in dying was intended for people who were terminally ill and whose death was foreseeable.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>As Canadians head to the polls next week, I reflect on what “big apology” a future government will one day issue.</p>
<p>Past transgressions have made governments increasingly adept at belatedly saying sorry. Even kind and polite Canada is not immune. From lamenting <a href="https://pm.gc.ca/en/news/news-releases/2021/05/14/prime-minister-announces-apology-internment-italian-canadians-during">wartime internments</a> and <a href="https://www.rcinet.ca/en/2016/09/22/history-sept-22-1988-apology-to-japanese-canadians-of-wwii/">removal of voting rights</a>, to turning away Sikh refugees — some to their deaths — on the <a href="https://www.cbc.ca/news/canada/komagata-maru-backgrounder-apology-1.3584372">Komagata Maru</a>, to <a href="https://www.canada.ca/en/crown-indigenous-relations-northern-affairs/news/2021/06/anniversary-of-the-apology-to-former-students-of-residential-schools.html">residential school atrocities against Indigenous children</a>, national apologies have become opportunities for press conferences of contrition.</p>
<p>In the hope of foregoing future photo opportunities, perhaps we should consider what the next big apology might be, and avoid needing to make it.</p>
<p>Reconsidering wide expansion of medical assistance in dying (MAiD) may be one such opportunity. In March 2021, the Liberal government, with the support of the Bloc Québécois, passed <a href="https://www.cbc.ca/news/politics/maid-bill-vote-senate-amendments-1.5946291">new MAiD legislation</a> removing previous safeguards (notably, both left and right were united against this, with NDP, Conservatives and Greens voting against). It is one of the <a href="https://www.reuters.com/article/us-health-canada-politics-death-idUSKBN2B930V">most liberal facilitated suicide laws in the world</a>. </p>
<h2>Avoidable wrongs</h2>
<p>Consider past justifications for one of the most notorious policies discriminating against women with mental illness and Indigenous women: Forced sterilization. Forced sterilizations were justified by a combination of devaluing certain lives and rationalizing that we were actually “doing the right thing”, and occurred across the world for decades. The policy <a href="https://www.cbc.ca/news/canada/north/forced-sterilization-lawsuit-could-expand-1.5102981">officially continued in Canada until the mid 1970s</a>, with women continuing to report the practice even into the late 2010s. While clearly coercive, society comforted itself by rationalizing that <a href="https://www.npr.org/sections/health-shots/2016/03/07/469478098/the-supreme-court-ruling-that-led-to-70-000-forced-sterilizations">these women were “mentally defective” and “unfit</a>,” that they would be “better off” not having children and that society was somehow pursuing a greater good.</p>
<figure class="align-right ">
<img alt="Illustration of a tree representing eugenics from a eugenics conference in 1932" src="https://images.theconversation.com/files/420937/original/file-20210913-19-1ijadwm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/420937/original/file-20210913-19-1ijadwm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=844&fit=crop&dpr=1 600w, https://images.theconversation.com/files/420937/original/file-20210913-19-1ijadwm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=844&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/420937/original/file-20210913-19-1ijadwm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=844&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/420937/original/file-20210913-19-1ijadwm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1061&fit=crop&dpr=1 754w, https://images.theconversation.com/files/420937/original/file-20210913-19-1ijadwm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1061&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/420937/original/file-20210913-19-1ijadwm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1061&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">An illustration from a 1932 eugenics congress.</span>
<span class="attribution"><span class="source">Wellcome Collection</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Ableist assumptions, valuing some human lives more than others, have been manifest in societal policies for centuries. In September 1921, at the <a href="https://library.missouri.edu/specialcollections/exhibits/show/controlling-heredity/america/congresses">Second International Eugenics Congress</a>, Alexander Graham Bell and prominent academics of the day provided expert reassurances of enlightened beneficence with the tag line, “Eugenics is the self direction of human evolution,” promising a better future for all and setting the stage for justifying decades of mistreatment of the mentally ill and marginalized.</p>
<h2>MAiD and marginalization</h2>
<p>Now consider the <a href="https://www.sencanada.ca/en/Content/Sen/Committee/432/LCJC/02ev-55071-e">arguments made in favour</a> of providing MAiD for mental illness: That MAiD is about respecting autonomy and providing compassionate relief from suffering. That MAiD is about dignity and valuing what people want. And perhaps most importantly, that MAiD is not the same as the tragic suicides society aims to prevent.</p>
<p>When MAiD is provided in near end-of-life conditions, when we know someone will not improve and faces enduring suffering, the above arguments are valid and supported by evidence. In these situations, we find that <a href="https://dx.doi.org/10.1136/jme.2007.022335">white, wealthy and privileged people tend to seek MAiD</a>.</p>
<p>All the above arguments become fantasies once <a href="https://www.justice.gc.ca/eng/cj-jp/ad-am/bk-di.html">MAiD is expanded beyond near end-of-life conditions</a> to the non-dying with disabilities and mental illness, as the Trudeau government intends, with <a href="https://www.justice.gc.ca/eng/cj-jp/ad-am/bk-di.html">even more MAiD restrictions lifting in 2023</a>. </p>
<p>In these situations, evidence shows that populations <a href="http://doi.org/10.1001/jamapsychiatry.2015.2887">marginalized by poverty, loneliness and unresolved life suffering seek MAiD</a>, with twice as many women as men being euthanized for psychiatric disorders. This is the same ratio of women to men who <a href="https://www.suicideinfo.ca/resource/women-and-suicide/">attempt suicide when mentally ill</a> but who, absent the 100 per cent lethal means of MAiD, <a href="https://www.hsph.harvard.edu/means-matter/means-matter/survival/">survive the attempt and do not try again</a>.</p>
<p>Yet, despite <a href="https://theconversation.com/medical-assistance-in-dying-for-mental-illness-ignores-safeguards-for-vulnerable-people-156012">lack of evidence that MAiD can responsibly be provided for mental illness</a>, MAiD expansionists blindly forward the same arguments to push <a href="https://www.sencanada.ca/en/Content/Sen/Committee/432/LCJC/02ev-55071-e">broader access to MAiD with fewer safeguards</a>. This benefits the white, wealthy and privileged to have even more autonomy, while sacrificing our most vulnerable, those marginalized by sexism, racism, ageism and ableism, to <a href="https://www.thestar.com/opinion/contributors/2021/03/01/maid-for-mental-illness-is-grave-discrimination.html">entirely avoidable premature deaths</a>. </p>
<figure class="align-center ">
<img alt="David Lametti wearing a face mask standing at a podium" src="https://images.theconversation.com/files/420971/original/file-20210914-23-kktgm7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/420971/original/file-20210914-23-kktgm7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=453&fit=crop&dpr=1 600w, https://images.theconversation.com/files/420971/original/file-20210914-23-kktgm7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=453&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/420971/original/file-20210914-23-kktgm7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=453&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/420971/original/file-20210914-23-kktgm7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=570&fit=crop&dpr=1 754w, https://images.theconversation.com/files/420971/original/file-20210914-23-kktgm7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=570&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/420971/original/file-20210914-23-kktgm7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=570&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">David Lametti, minister of justice and attorney general of Canada, arrives to deliver a statement on Bill C-7 on Parliament Hill on March 11.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Sean Kilpatrick</span></span>
</figcaption>
</figure>
<p>Ironically, it sacrifices them to these deaths under the pretence of autonomy, disregarding how <a href="https://health.jotwell.com/how-the-mantra-of-informed-consent-in-the-canadian-assisted-dying-debate-obscures-somatic-oppression/">internalized oppression would force our most vulnerable</a> to make an impossible, and unfair, choice to “die well” because society never gave them a chance to live well. Evidence shows that these are often <a href="https://cca-reports.ca/wp-content/uploads/2018/12/The-State-of-Knowledge-on-Medical-Assistance-in-Dying-Where-a-Mental-Disorder-is-the-Sole-Underlying-Medical-Condition.pdf">ambivalent suicidal wishes</a> in people who could have gotten better and are seeking escape from social disenfranchisement, not from inevitable medical suffering. These people would want to live if given a true choice of life with dignity instead of the enticement of a painless death to escape a painful life.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/medical-assistance-in-dying-for-mental-illness-ignores-safeguards-for-vulnerable-people-156012">Medical assistance in dying for mental illness ignores safeguards for vulnerable people</a>
</strong>
</em>
</p>
<hr>
<p>From eugenics to forced sterilizations, public figures and ideologues of the day ignored cautions of dissent and assured society it was “doing the right thing,” allowing us to overlook the reality that the most vulnerable amongst us were being discarded.</p>
<p>Today, ignoring the evidence, <a href="https://www.ctvnews.ca/politics/senators-amend-maid-bill-to-put-18-month-time-limit-on-mental-illness-exclusion-1.5302151">prominent politicians, senators and, sadly, some of my psychiatrist colleagues</a> are similarly reassuring Canadians that our wide MAiD expansion is enlightened and “safe.” It may be safe for the privileged who already live well and will have more autonomy to die better. For others, the non-dying disabled and marginalized whose social suffering will be solved with death, it will eventually be called something else.</p>
<p>If we knowingly ignore this reality, we can anticipate the inevitable press conference with a future Canadian prime minister issuing a heartfelt apology for our current sins.</p><img src="https://counter.theconversation.com/content/167688/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Karandeep Sonu Gaind acted as an expert witness and consultant for the crown in the Truchon and Lamb cases, sat on the Council of Canadian Academies Expert Panel on MAiD and Mental Illness, is physician chair of the Humber River Hospital MAiD Team, is a past president of the Canadian Psychiatric Association (CPA) and chaired the time-limited CPA Task Force on MAiD.</span></em></p>Research suggests that expanded access to MAiD tends to benefit people with wealth and privilege, offering them choices and autonomy. At the same time, it puts marginalized people at risk.Karandeep Sonu Gaind, Professor of Psychiatry, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1585912021-04-19T09:53:49Z2021-04-19T09:53:49ZHow pandemic responses neglected disabled people’s rights<p>The pandemic has had a disproportionate impact on disabled people, who make up six out of ten COVID-19 related deaths in the UK, <a href="https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/coronaviruscovid19relateddeathsbydisabilitystatusenglandandwales/24januaryto20november2020">according to the Office of National Statistics</a>. So far no other country has published the same data, making it difficult to assess the global impact, particularly in low and middle-income countries <a href="https://www.un.org/development/desa/disabilities/resources/factsheet-on-persons-with-disabilities.html">where 80% of the world’s disabled population live</a>. </p>
<p>Despite the ratification of the <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html">UN Convention on the Rights of Persons with Disabilities</a> by 182 countries, disabled people still face significant discrimination, stigma, and poverty globally. </p>
<p>Research on <a href="https://disabilityundersiege.org/wp-content/uploads/2021/03/Impact-of-COVID-19-on-disabled-people-literature-review.pdf">COVID-19 and disabled people in low and middle-income countries</a> has found that the pandemic threatens to reverse progress towards reducing poverty and improving access to education and employment for disabled people.</p>
<p>While some may be more susceptible to the virus due to existing health conditions, social factors also contribute to putting disabled people at greater risk of contracting COVID-19. Many disabled people have struggled to get access to personal protective equipment and health information, with only 5% of countries around the world having <a href="https://www.biorxiv.org/content/10.1101/2020.08.16.252676v1">fully accessible health authority websites</a>. Meanwhile, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7388791/">36% of low and middle-income countries</a> don’t have sign language interpreters at health briefings, nor does the World Health Organization.</p>
<h2>Stigma and inequality</h2>
<p>Disabled people have had to deal with health discrimination for decades but there’s significant evidence that it has increased during the pandemic. </p>
<p>The issues they face range from <a href="https://nfdn.org.np/wp-content/uploads/2020/05/NFDN-Nepal_IMPACT-OF-COVID-19-PANDEMIC-AND-LOCKDOWN-Checked-Accessibility.pdf">inaccessible COVID-19 treatment centres</a> to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7479422/">triage protocols which assume disabled lives are less valuable</a>. Many disability-specific health services also <a href="https://africlaw.com/2020/05/18/lack-of-consultation-led-to-persons-with-disabilities-being-neglected-in-the-covid-19-response/">closed during lockdowns after being deemed “non-essential”</a>.</p>
<p>The impact of the pandemic goes beyond the virus, however. For many who live in poverty, hunger is a bigger and more immediate threat than the risk of catching COVID-19. Disabled people are <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7455235/">more likely to be unemployed or in informal work</a>, and therefore more likely to lose their income during lockdowns. </p>
<p>COVID-19 restrictions led to neglect and death for many who relied on family and friends for care. In China, a teenager <a href="https://www.bbc.com/news/world-asia-china-51362772">died at home after his family members were forcibly quarantined</a> and no alternative care was provided. <a href="https://covid-drm.org/assets/documents/Disability-Rights-During-the-Pandemic-report-web.pdf">Incidents of stigma and violence</a> also rose during the pandemic, with disabled people being blamed for the virus. In Uganda, police <a href="https://www.internationaldisabilityalliance.org/uganda-deaf-man">shot a deaf man in the leg</a> for not following verbal commands.</p>
<p>Relief measures in most countries were <a href="http://hdl.handle.net/10986/33635">usually short-term</a> and often not targeted at disabled people, sometimes specifically <a href="https://www.sddirect.org.uk/media/2063/query-no-42-economic-impacts-of-covid-19.pdf">excluding those receiving disability benefits</a> from additional COVID-19 support. </p>
<p>These issues are especially pronounced in low and middle-income countries because social welfare tends to be poorly developed, with <a href="http://unsdg.un.org/sites/default/files/2020-05/Policy-Brief-A-Disability-Inclusive-Response-to-COVID-19.pdf">only 1% of disabled people in low-income countries</a> having access to disability benefits. </p>
<p>Education was also a significant factor in rolling back progression on disability rights issues. Two major barriers to remote education were access to technology, particularly in rural areas, and inaccessibility of technology, <a href="https://www.worldbank.org/en/topic/disability/publication/pivoting-to-inclusion-leveraging-lessons-from-the-c-ovid-19-crisis-for-learners-with-disabilities">with learning often not adapted for pupils with disabilities</a>. </p>
<p>While data on school returns since the pandemic is not yet available (<a href="https://reliefweb.int/sites/reliefweb.int/files/resources/Ensuring%20an%20inclusive%20return%20to%20school%20for%20children%20with%20disabilities%20-%20UNICEF%20East%20Asia%20and%20Pacific%20Region%20COVID-19%20technical%20guidance.pdf">only half of disabled children</a> were in school prior to the pandemic), there are significant concerns about lower numbers of disabled children returning, particularly girls. </p>
<p>Those who do return face <a href="https://reliefweb.int/sites/reliefweb.int/files/resources/Ensuring%20an%20inclusive%20return%20to%20school%20for%20children%20with%20disabilities%20-%20UNICEF%20East%20Asia%20and%20Pacific%20Region%20COVID-19%20technical%20guidance.pdf">increased attainment gaps</a>, which schools are often poorly equipped to address. </p>
<h2>Plugging gaps</h2>
<p>While the pandemic has been described as an opportunity <a href="https://www.un.org/development/desa/dspd/2020/10/covid-19-inequalities-and-building-back-better/">to “build back better”</a> and address global inequality, there is little evidence that previous major disasters or emergencies resulted in significant positive change for disabled people. </p>
<p>In fact, disabled people are <a href="https://www.un.org/development/desa/disabilities/issues/disability-inclusive-disaster-risk-reduction-and-emergency-situations.html#:%7E:text=Common%20experience%20reveals%20that%20persons,and%20services%20and%20transportation%20systems.">more likely to be abandoned</a> during disasters, according to the UN.</p>
<p>The few existing studies on disability and disaster recovery highlight the importance of <a href="https://www.sciencedirect.com/science/article/abs/pii/S2212420918311518">working with disabled people</a> to build their requirements into emergency planning from the outset. But it’s clear this lesson hasn’t been learned. In most countries, disabled people were at best an afterthought, and often their needs weren’t considered at all. </p>
<p>What’s often missing from popular narratives about disabled people are stories about their resilience. <a href="https://covid-drm.org/assets/documents/Disability-Rights-During-the-Pandemic-report-web.pdf">Disabled people’s organisations</a> have been vital in many countries in distributing food, PPE and health information in the absence of official support.</p>
<p>Unfortunately, by continuing to stereotype disability as a medical problem or a tragic experience, society fails to recognise <a href="https://www.sjdr.se/articles/10.16993/sjdr.732/">the social factors that make disabled people vulnerable</a> in the first place.</p>
<p>In order to build towards a better future, it’s crucial to recognise the role of social oppression in holding back human rights for disabled people. That means moving beyond the medical sphere and using data on the pandemic’s impact on disabled people to understand how structures around the world lead to systemic disadvantage. </p>
<p>It’s time we recognised disabled people as experts – both at understanding their own needs, and at dealing with crises and unforeseen emergencies in a world that is not built for them. A disability-inclusive recovery from COVID-19 means disabled people are not only considered, but take a central role in planning what recovery may look like.</p><img src="https://counter.theconversation.com/content/158591/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Vera Kubenz receives funding from Arts and Humanities Research Council. </span></em></p>The devastating effect COVID-19 has had on disabled people globally goes far beyond health issuesVera Kubenz, Research Fellow – GCRF Network+ “Disability Under Siege”, University of BirminghamLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1579332021-04-07T16:24:05Z2021-04-07T16:24:05ZCOVID-19 amplifies the complexity of disability and race<figure><img src="https://images.theconversation.com/files/392947/original/file-20210331-17-wlwbpp.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2991%2C1935&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Veronica Lopez, who has spina bifida, gets vaccinated at COVID-19 vaccination site at the East Los Angeles Civic Center in Los Angeles. </span> <span class="attribution"><span class="source">(AP Photo/Damian Dovarganes)</span></span></figcaption></figure><p>In Canada, COVID-19 has exacerbated long-standing institutional and systemic inequalities for disabled people. And these inequalities are rooted in ableism. </p>
<p><a href="https://www.accessliving.org/newsroom/blog/ableism-101/">Ableism represents beliefs</a>, <a href="https://www.palgrave.com/gp/book/9780230579286">social practices and policies</a> that (re)produce and privilege <a href="https://dsq-sds.org/article/view/60/60">expectations of able-bodiedness</a> and able-mindedness. Resulting in the marginalization, exclusion and oppression of people with mind/body differences. </p>
<p>Disabled people’s identities are also intersectional — they may be <a href="https://radssite.wordpress.com/2020/06/29/covid-19-race-discrimination-stigma-and-impacts-on-health/">racialized</a>, gendered, elderly, <a href="https://www.nature.com/articles/d41586-020-01313-9">may live in poverty</a> and/or are part of <a href="https://www.cbc.ca/news/canada/montreal/quebec-asylum-seekers-1.5575905">newcomer communities</a>. This viewpoint further reveals the persistent and <a href="https://www.vox.com/first-person/2020/4/4/21204261/coronavirus-covid-19-disabled-people-disabilities-triage">invisible injustices disabled people experience</a> and is important for developing policies, resources and supports for those affected by the pandemic.</p>
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Read more:
<a href="https://theconversation.com/what-is-intersectionality-all-of-who-i-am-105639">What is intersectionality? All of who I am</a>
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<p>The term <a href="https://www.ted.com/talks/kimberle_crenshaw_the_urgency_of_intersectionality?language=en">intersectionality</a>, coined by <a href="https://doi.org/10.2307/1229039">Black feminist legal scholar Kimberlé Crenshaw</a>, illustrates how the systemic oppression Black women experience differs from that of Black men or white women because of the intertwining effects of various systems of oppression (such as racism, ableism, sexism, ageism and others). </p>
<p>An <a href="https://www.vox.com/the-highlight/2019/5/20/18542843/intersectionality-conservatism-law-race-gender-discrimination">intersectional lens</a> allows us to examine how peoples’ different social identities (race, ability, gender and age) <a href="https://www.cbc.ca/news/politics/pandemic-covid-coronavirus-cerb-unemployment-1.5610404">are interconnected</a>. How <a href="https://www.routledge.com/Black-Feminist-Thought-Knowledge-Consciousness-and-the-Politics-of-Empowerment/Collins/p/book/9780415964722">different contexts</a> create privilege (circumstances of visibility, value, access to resources and opportunities for upward movement), and/or oppression (circumstances of invisibility, devaluation, lack of resources/access to them and limited opportunities).</p>
<h2>Experiences and the intersectionality of disability</h2>
<p>The following are stories our colleagues have shared with us.</p>
<p>Jeff Preston is a white man who has lived with disability all his life. He grew up with the support of his family, attended school and earned his PhD. He is now an assistant professor in Disability Studies at King’s University College at Western University in London, Ont. He uses an electric wheelchair and requires assistance from his attendants. This assistance allows him to get out of bed, get dressed and get to work. </p>
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<p>“What has been important here is my day to day. My attendants and access to resources. On Day 1 of the pandemic one of my attendants resigned as they were heading home. Another one … now is not coming back, so I am down two attendants. If I lose another, I will be in a tight spot. How will I get out of bed? How can I work? What happens if I get sick?”</p>
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<p>Preston is privileged as a white man and a university professor who was raised in a family with financial and social resources to support him and his education. He receives direct funding to hire <a href="https://www.cbc.ca/listen/live-radio/1-75-white-coat-black-art/clip/15822896-people-disabilities-need-move-front-line">attendants to support</a> his daily activities, which the pandemic complicated. </p>
<p>Government mandates to stay at home and follow strict physical and social distancing guidelines assume that everyone can abide by them. For Preston, like other disabled persons, these mandates do not consider his need for attendants to get on with his daily life. </p>
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Read more:
<a href="https://theconversation.com/partisanship-fuels-what-people-with-disabilities-think-about-covid-19-response-156607">Partisanship fuels what people with disabilities think about COVID-19 response</a>
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<p>Jheanelle Anderson is a Black disabled immigrant woman with a congenital disability and autoimmune disease. When her family immigrated to Canada, she was left behind due to being labelled medically inadmissible under Canada’s ableist <a href="https://laws-lois.justice.gc.ca/eng/acts/i-2.5/section-38.html">Immigration Act</a>. After receiving surgery to amputate her leg, she was able to rejoin her family in Canada. </p>
<p>Her initial <a href="https://doi.org/10.31274/jctp-180810-96">inadmissibility to Canada</a> reflects the entanglement of racism and ableism to keep some bodies out. While Jheanelle feels that she had an easier transition than most immigrants given her familial support, the feeling of burden has stayed with her. </p>
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<p>“I’m a disabled Black woman, you know, where all of that works in tandem with each other and it’s almost as if <strong>because like</strong> people are only focusing on a single story, I have to choose between either my Blackness or my disability. But I do not move in life like that. It is really important to highlight a holistic experience because … there are multiple things going on at the same time as I move through life. These structures are … very violent and they affect each and every one of my identities.”</p>
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<p>As the realities of COVID-19 set in, Jheanelle was finishing up her master’s in social work and waiting to be refitted for a new prosthesis. Her new prothesis was put on hold as it was not deemed an essential service during the pandemic. Jheanelle’s story provides insight into the complexity of navigating health services. Most organizations focus services and programs on single identity issues, viewing disability as a monolithic experience without an understanding of the ongoing impact of racism and ableism embedded in these programs. </p>
<p>Her experiences as a service user during this pandemic cannot be broken apart and separated into “disabled,” “Black” and “woman” — they are intertwined.</p>
<h2>Ableist assumptions and COVID-19</h2>
<p>Ableist assumptions that everyone can abide by social and physical distancing mandates, or that health and support services can be put on hold without any consequences, create <a href="https://doi.org/10.1177%2F1473325020981755">dangerous situations for disabled people</a>. </p>
<p>Media reports have documented the negative impact of <a href="https://www.cbc.ca/radio/thecurrent/the-current-for-june-4-2020-1.5598110/thursday-june-4-2020-full-transcript-1.5598962">ableist pandemic policies on disabled people’s lives</a>. Many face living in isolation to protect themselves and others, despite no longer having adequate supports related to personal care, food access, communication, etc. </p>
<p>Parents of disabled children coping with school closures <a href="https://www.thestar.com/news/gta/2020/03/28/families-of-children-with-special-needs-are-in-crisis-mode-says-milton-mother.html">are frustrated by the lack of resources for their children</a>. And fear from parents with disabled children that <a href="https://www.thestar.com/opinion/contributors/2020/03/31/should-the-life-of-down-syndrome-daughter-be-valued-less.html">ventilator shortages</a> may mean their child’s ventilator will go to an abled-bodied person instead. </p>
<p>These stories demonstrate the devaluation of disabled lives. Yet they are just the tip of the iceberg. </p>
<p>While they are very important, the diversity within the disability community, the intersectional stories of disability, race and other social locations are not always presented. Disabled people, BIPOC, women, LGBTQ2S+ and other communities —all marginalized before the pandemic — are experiencing even greater inequities as a result of COVID-19. Pandemic planning has not taken them into consideration. </p>
<p>Using an intersectional approach will help bring visibility to diverse disability communities and provide the support they need to be safe, recover and rebuild their lives. Now, and going forward, we need to attend carefully and critically to the effects of the pandemic on diverse disability communities.</p><img src="https://counter.theconversation.com/content/157933/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Karen Kume Yoshida receives funding from the Social Sciences and Humanities Research Council. . </span></em></p><p class="fine-print"><em><span>Ann Fudge Schormans receives funding from the Social Sciences and Humanities Research Council. </span></em></p><p class="fine-print"><em><span>Chavon Niles and Susan Mahipaul 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>Using an intersectional approach will help bring visibility to diverse disability communities and provide the support they need to be safe, recover and rebuild their lives.Karen Kume Yoshida, Professor, Critical Disability Studies, University of TorontoAnn Fudge Schormans, Associate Professor of Social Work, McMaster UniversityChavon Niles, Postdoctoral Research Fellow, Department of Physical Therapy, Faculty of Medicine, University of TorontoSusan Mahipaul, Lecturer, Disability Studies at King's University College, Western UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1535402021-02-08T16:32:44Z2021-02-08T16:32:44ZA dangerous path: Why expanding access to medical assistance in dying keeps us up at night<figure><img src="https://images.theconversation.com/files/382707/original/file-20210205-14-1nfo1ub.jpg?ixlib=rb-1.1.0&rect=105%2C6%2C4016%2C2725&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Minister of Justice David Lametti gives a thumbs up as he rises to vote in favour of a motion on Bill C-7, medical assistance in dying, in the House of Commons on Dec. 10, 2020. </span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Justin Tang</span></span></figcaption></figure><p>When a government starts making laws based on the premise that some lives are not worth living, it is setting out on an extremely dangerous path. </p>
<p>That is the path that <a href="https://www.justice.gc.ca/eng/csj-sjc/pl/charter-charte/c7.html">Bill C-7, the proposed law to expand access to Medical Assistance in Dying</a> (MAID) to people whose death is not imminent, sets Canada on.</p>
<p>This is what keeps us — two MDs and a PhD on wheels — up at night. We each have a different perspective on the dangers of expanding MAID eligibility to people who are not dying. </p>
<p>Bill C-7 was <a href="https://www.cbc.ca/news/politics/maid-commons-senate-c7-1.5836319">passed in the House of Commons in December</a>, and is proceeding to the senate in February.</p>
<h2>Health ethics: Careening down a slippery slope</h2>
<p><em>Heidi Janz is an ethics professor at the University of Alberta, and chair of the Council of Canadians with Disabilities’ Ending-of-Life Ethics Committee</em></p>
<p>I describe myself as a long-hauler in the struggle against the legalization of assisted suicide and euthanasia for people with disabilities.</p>
<p>What first activated me was the <a href="https://www.researchgate.net/publication/317816777_DISABLING_IMAGES_AND_THE_DANGERS_OF_PUBLIC_PERCEPTION_A_COMMENTARY_ON_THE_MEDIA%27S_COVERAGE_OF_THE_LATIMER_CASE">unqualified media and public support that Robert Latimer received in 1993 when he was charged with killing his daughter, Tracy, who had cerebral palsy</a>. I remember watching a news magazine show on the topic <em>When is it right to kill someone with severe disabilities?</em> and realizing that most Canadians would consider my life not worth living.</p>
<p>The Latimer case revealed the prevalence of <a href="https://doi.org/10.1057/dev.2008.17">ableism</a> in Canada and marked the start of the slippery slope down which our country is careening. </p>
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<figcaption><span class="caption">Dr. Heidi Janz’s testimony before the House of Commons Justice Committee studying Bill C-7.</span></figcaption>
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<p>As a professor of health ethics who has disabilities, I worry about the effect that the expansion of MAID under Bill C-7 will have on kids and youth with disabilities. <a href="http://dx.doi.org/10.1108/S1479-363620170000010007">I attended a school for kids with disabilities</a>. Roughly half the students had muscular dystrophy, and a life expectancy of 14-18 years. Growing up, we all knew that some of us would live longer than others. But we also knew that all of us would live with the best quality of life possible, until we died.</p>
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Read more:
<a href="https://theconversation.com/think-disability-is-a-tragedy-we-pity-you-82047">Think disability is a tragedy? We pity you</a>
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<p>What keeps me up at night is knowing that this is not the message the current generation of kids with disabilities is getting. Instead, they’re hearing about <a href="https://globalnews.ca/news/3826108/assisted-death-canada-children/">parents requesting MAID for their disabled kids</a>.</p>
<p>I hope that Canadians with disabilities can find safe doctors who will fight for our lives, instead of encouraging us to end our lives.</p>
<h2>Palliative care: Healing vs. hastening death</h2>
<p><em>Leonie Herx is past president of the Canadian Society of Palliative Care Physicians and chair of the Division of Palliative Medicine at Queen’s University</em></p>
<p>As a palliative care physician, I was drawn into the “assisted dying” debate when the <a href="https://www.justice.gc.ca/eng/cj-jp/ad-am/scc-csc.html">Supreme Court of Canada</a> struck down the <a href="https://www.cbc.ca/news/politics/supreme-court-says-yes-to-doctor-assisted-suicide-in-specific-cases-1.2947487">prohibition against assisted suicide in the 2015 Carter decision</a>.</p>
<p>After the Carter ruling, there was a lot of <a href="https://doi.org/10.1093/annonc/mdp048">erroneous talk about how palliative care already hastens death</a>, and an expectation that palliative physicians would therefore take on this life-ending procedure as part of our practice. Our speciality has spent a lot of time helping people understand that hastening death or intentionally ending life violates the <a href="https://www.cspcp.ca/wp-content/uploads/2019/11/CHPCA-and-CSPCP-Statement-on-HPC-and-MAiD-Final.pdf">core principles and</a> internationally recognized <a href="https://www.cspcp.ca/wp-content/uploads/2019/11/CHPCA-and-CSPCP-Statement-on-HPC-and-MAiD-Final.pdf">definition of palliative care</a>.</p>
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<figcaption><span class="caption">Dr. Leonie Herx’s testimony before the House of Commons Justice Committee studying Bill C-7.</span></figcaption>
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<p>One of my concerns is that physicians would be expected to raise MAID as if it were like any other medical option, when it is not. For a doctor to say, “Well, you could choose this drug, or these supports to help you, or you could choose death,” would be suggesting to someone that their life isn’t worth living.</p>
<p>As a physician, my job is to restore hope and promote healing. It’s not to suggest death as the answer to suffering and to facilitate ending someone’s life.</p>
<p>Bill C-7 is based on a very narrow view of autonomy and <a href="https://www.canada.ca/en/health-canada/services/medical-assistance-dying-annual-report-2019.html#a3.2">people who want to have control over their own death via an assisted suicide make up a very small percentage of the population, around two per cent</a>. Legislative protections need to be put in place to prevent people from being pressured into MAID and doctors from being forced to facilitate it.</p>
<h2>Family medicine: Support for the vulnerable</h2>
<p><em>Ramona Coelho is a family physician in London, Ont.</em></p>
<p>As a family physician who cares for people with chronic illnesses and disabilities, I was drawn into the debate around assisted dying out of concern for my patients, who often suffer from <a href="https://www.macleans.ca/opinion/dying-for-the-right-to-live">poverty and inadequate resources</a>. So they might feel pressured to choose death <a href="https://www.zonmw.nl/nl/onderzoek-resultaten/ouderen/programmas/project-detail/vooronderzoek-voltooid-leven/het-perspectief-project-perspectieven-op-de-doodswens-bij-voltooid-leven-de-mens-en-de-cijfers/">because of inadequate supports</a> to live or because a doctor perceives that they might be <a href="https://nationalpost.com/news/canada/denied-assisted-life-by-hospital-ontario-man-is-offered-death-instead-lawsuit">better off dead</a>.</p>
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<figcaption><span class="caption">Dr. Ramona Coelho’s testimony before the Senate Committee Pre-Study on Bill C-7.</span></figcaption>
</figure>
<p>By expanding MAID, I believe we are ignoring the common good. <a href="https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/prevention-risks/about-non-medical-masks-face-coverings.html">We are wearing masks right now to protect our vulnerable due to COVID-19</a>. But we must similarly consider how expanding MAID will affect vulnerable persons.</p>
<p>One of my patients told me she is planning to access MAID because she lives in poverty and isolation, and doesn’t have home care supports for her disability. Sadly, <a href="https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/">many other people with disabilities share her desperation</a>.</p>
<p>No one belongs on the margins of society. I chose to practise medicine because built into this work is the opportunity to help and heal. What a privilege! If many of us can keep our focus on <a href="https://inclusioncanada.ca/wp-content/uploads/2018/02/CACL-and-PFC-Brief-Accessibility-and-Poverty-Reduction-Final-June-2017.pdf">reducing social inequality</a>, I can remain hopeful.</p>
<h2>Losing sleep</h2>
<p>We each have different reasons to lose sleep over Bill C-7 as it inches its way closer to becoming law. As the bill proceeds to the Senate, Canadians need to consider where this path leads, and understand how it will affect vulnerable people. </p>
<p>Rather than expanding access to MAID, the priority should be to ensure access to the care and supports necessary to live and, when the time comes, to have a peaceful natural death with high quality palliative care.</p>
<p><em>This article was also co-authored by Ramona Coelho, a family physician in London, Ont.</em></p><img src="https://counter.theconversation.com/content/153540/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>Expanding access to medical assistance in dying (MAID) to those not terminally ill puts vulnerable people at risk of feeling pressured into MAID, and doctors at risk of being forced to facilitate it.Heidi L. Janz, Adjunct Professor of Disability Ethics, John Dossetor Health Ethics Centre, University of AlbertaLeonie Herx, Division Chair & Associate Professor of Palliative Medicine, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1475452020-11-01T13:03:30Z2020-11-01T13:03:30ZPeople with disabilities at risk of being wrongly deemed ‘incompetent’ by health system<figure><img src="https://images.theconversation.com/files/363846/original/file-20201016-13-aqc2fk.jpg?ixlib=rb-1.1.0&rect=206%2C0%2C4496%2C3263&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Many of the assessments used to evaluate capacity do not account for specific types of disabilities.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>As an individual with a disability, I live in fear that if admitted to hospital, a health-care provider may deem me incompetent based on my disability. This may seem unlikely, but my lived, academic and professional experiences have shown me that <a href="https://doi.org/10.1300/J095v07n01_18">assumptions regarding the capabilities of persons with disabilities</a> are often inaccurate and misguided. </p>
<p>Further, many of the assessments used to assess capacity do not account for specific types of disabilities. For example, the <a href="https://www.mocatest.org">Montreal Cognitive Assessment</a> (MoCA), in which the subject is asked to draw a clock face, could present difficulties for someone with a visual disability, even if that visual disability doesn’t impact the person’s cognition. </p>
<p>Another example is the <a href="https://www.dementiacarecentral.com/mini-mental-state-exam/">Mini-Mental State Examination</a> (MMSE), which asks seniors the month and the season. They are asked to spell “world” backwards and forward. If one were dyslexic, spelling “world” forward could present a challenge, and spelling it backwards would be even harder. </p>
<p>While the MoCA and MMSE are tools designed to assess cognition and not necessarily capacity, test results indicating “compromised cognition” tell an incomplete story about people on paper that could jeopardize their right to have agency in real life. </p>
<h2>Capacity</h2>
<p>Capacity raises a lot of important questions about consent, autonomy, agency and who determines capacity. </p>
<p>Capacity assessments are <a href="https://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/incapacity/capacity_assessment.php">formal assessments of a person’s mental capacity to make decisions</a> about property and personal care. Under the <a href="https://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/pgtsda.pdf">Substitute Decisions Act</a> in Ontario, many situations require capacity assessments to be conducted by specially qualified assessors who must follow specific guidelines. </p>
<p>Capacity is typically described as a person’s <a href="http://www.advocacycentreelderly.org/appimages/file/Legal%20Framework%20of%20Decisional%20Capacity.pdf">capability to understand the information relevant to making a certain decision</a> and appreciate that their decisions or indecision may impact themselves or others. Capacity assessments may be conducted for a range of reasons, including cognitive decline after experiencing illness, or disability during an episode in hospital. </p>
<figure class="align-center ">
<img alt="A young woman with Down syndrome at yoga class." src="https://images.theconversation.com/files/363851/original/file-20201016-23-1s018ul.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/363851/original/file-20201016-23-1s018ul.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/363851/original/file-20201016-23-1s018ul.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/363851/original/file-20201016-23-1s018ul.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/363851/original/file-20201016-23-1s018ul.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/363851/original/file-20201016-23-1s018ul.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/363851/original/file-20201016-23-1s018ul.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">Some parents of young adults with capacity limitations due to developmental disabilities may incorrectly believe that guardianship is necessary and inevitable.</span>
<span class="attribution"><span class="source">(Pexels/Cliff Booth)</span></span>
</figcaption>
</figure>
<p>Families may unrealistically hope that a capacity assessment will somehow solve difficult practical or ethical issues. Some parents of young adults with capacity limitations due to developmental disabilities may <a href="https://communitylivingontario.ca/wp-content/uploads/2017/08/Coalition-on-Alternatives-to-Guardianship-Preliminary-Brief-to-LCO-on-Interim-Report-March-7-2016.pdf">incorrectly believe that guardianship is a necessary and inevitable</a> next step as their child nears adulthood. Professionals may also misunderstand <a href="https://www.lco-cdo.org/wp-content/uploads/2010/11/disabilities-commissioned-paper-bach-kerzner.pdf">what can be achieved through the capacity assessment process and may conflate disability with lack of capacity</a>.</p>
<h2>Systemic ableism</h2>
<p>Our health-care system is fraught with paternalistic attitudes surrounding the capabilities of people with disabilities. The systemic ableism that exists in health care can, in part, result in people being <a href="https://www.abc.net.au/news/2015-11-22/risky-activities-could-improve-quality-of-life-for-elderly/6939166">prematurely placed in long-term care homes</a> — particularly <a href="https://www.ices.on.ca/Publications/Atlases-and-Reports/2019/Addressing-Gaps-in-the-Health-Care-Services-Used-by-Adults-with-Developmental-Disabilities">people who have disabilities</a>. Health-care providers may not be aware of alternatives to long-term care such as microboards, direct-funded attendant services, supportive housing and co-housing. </p>
<p>Co-housing is a type of <a href="https://doi.org/10.1080/14036096.2019.1633398">collaborative housing</a> in which residents actively participate in the design and operations of their own community. This community may exist within a single home, on a shared piece of land, in an urban neighbourhood or in a cluster of houses. </p>
<p><a href="https://www.microboardsontario.com">Microboards</a> are a type of self-directed support organization that helps individuals pursue their hopes and dreams and work with others to design individualized and customized supports aligned with their personal vision of the future. </p>
<p><a href="https://www.dfontario.ca">Direct-funded attendant services</a> refer to funding that is paid directly to the consumer to recruit, hire and train their own personal support attendants. </p>
<h2>Dignity of risk</h2>
<p>Dignity of risk is also associated with capacity. It refers to the concept of affording a person the right (or dignity) to take reasonable risks, and indicates that the <a href="https://onlinelibrary.wiley.com/doi/10.1111/ajag.12014">impeding of this right</a> can suffocate an individual’s personal growth, self-esteem and overall quality of life. In health-care and social services settings, the emphasis is all too often on a <a href="https://doi.org/10.1080/13698575.2018.1519115">custodial approach to “do what is best” for an individual</a>, and little consideration is given to the dignity of risk, nor the right each of us has to take risks. </p>
<figure class="align-center ">
<img alt="A young man with cerebral palsy in a wheelchair wearing a blue T-shirt and using a computer and a headset." src="https://images.theconversation.com/files/363857/original/file-20201016-17-lza3ki.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/363857/original/file-20201016-17-lza3ki.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/363857/original/file-20201016-17-lza3ki.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/363857/original/file-20201016-17-lza3ki.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/363857/original/file-20201016-17-lza3ki.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/363857/original/file-20201016-17-lza3ki.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/363857/original/file-20201016-17-lza3ki.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">Care-centre professionals should not focus on avoidance of all risks, but should instead focus on how to support individuals to safely do what they want.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>The term “dignity of risk” was <a href="https://psycnet.apa.org/record/1972-23551-001">first coined in 1972 by disability advocate Robert Perske</a>. It referred to the overprotective safeguards provided to people living with disabilities in care settings and the paternalistic nature of those settings. Perske asserted that this was patronizing and diminished a person’s freedoms and self-esteem.</p>
<p>Care-centre professionals should not focus on avoidance of all risks, but should instead focus on how to support individuals to safely do what they want. <a href="https://www.lco-cdo.org/en/our-current-projects/the-law-and-persons-with-disabilities/disabilities-call-for-papers-january-2010/commissioned-papers-the-law-and-persons-with-disabilities/a-new-paradigm-for-protecting-autonomy-and-the-right-to-legal-capacity/v-canadas-traditional-and-current-legal-capacity-laws/">Canadian</a>, <a href="https://www.legislation.gov.uk/ukpga/2005/9/contents">British</a> and <a href="https://www.alrc.gov.au/publication/equality-capacity-and-disability-in-commonwealth-laws-ip-44/equality-capacity-and-disability-in-commonwealth-laws/capacity-and-decision-making/">Australian</a> mental capacity acts and laws share three common principles that demonstrate this understanding of decision-making and capture the concept of dignity of risk: </p>
<ul>
<li><p>Adults have the right to make their own decisions, and to be assumed to have the capacity to do so, unless there is evidence to the contrary. </p></li>
<li><p>Capacity should be viewed as decision-specific.</p></li>
<li><p>Adults should be offered <a href="https://doi.org/10.1080/13698575.2018.1519115">all reasonable support and assistance in making and following through on decisions</a> before others step in to make decisions for them. </p></li>
</ul>
<p>Even if an individual has been deemed incapable of performing certain tasks, they should be supported, as much as possible, to preserve this dignity of risk. A health-care provider’s role could include ensuring that clients make informed decisions by offering them all relevant information and maintaining support when clients execute the decision, whatever the outcome. </p>
<p>As an alternative to completely removing an individual’s autonomy when she or he is deemed incapable, a supported approach to decision-making can allow individuals to make decisions along with their advocates and support persons. This approach not only enables individuals to <a href="https://doi.org/10.1017/S0144686X16000593">feel more in control of their own lives, but also affords them opportunities to safely explore the risks and benefits</a> associated with their decisions. </p>
<p>There seems to be very little <a href="https://www.canada.ca/en/health-canada/services/publications/health-system-services/self-managed-care-programs-canada-report-to-health-canada.html">interplay between health care and social services regarding capacity assessments</a>, with the former lagging in the adoption of personalized individualized approaches. One such approach that’s been proposed is the concept of a microboard. However, there are more than 1,200 microboards in Canada, and I know of none that provide personalized funding to support seniors living with a disability. </p>
<p>In order to achieve a shift towards shared decision-making between older adults and others with disabilities, these individuals need to be encouraged and supported to take the lead in creating and managing structures that support them on their own terms. This should be done with the co-operation of offspring or trusted people who serve as the directors of a trust or microboard. </p>
<p>Significant benefits can be gained from improving understandings of capacity that involve individuals in shared decision-making. Benefits can also be gained from teaching medical and allied health-care providers that a shift away from the clinical approach to capacity — limiting people’s choices — and a focus on exploring options for allowing safe risk-taking or implementing workplace/institutional policies that foster and support positive risk-taking would be a step in the right direction.</p><img src="https://counter.theconversation.com/content/147545/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Elizabeth Mohler receives funding from SSHRC Doctoral Fellowship</span></em></p>Our health-care system is fraught with paternalistic attitudes toward the capabilities of people with disabilities. Capacity assessments raise important issues about consent, autonomy and agency.Elizabeth Mohler, PHD Student, Health and Rehabilitation Sciences, Western UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1408172020-08-05T13:45:46Z2020-08-05T13:45:46ZCOVID-19, stigma and the scandalous neglect of people living with dementia<figure><img src="https://images.theconversation.com/files/350295/original/file-20200729-25-g3jiq4.jpg?ixlib=rb-1.1.0&rect=22%2C0%2C1816%2C1066&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Cultural narratives, ableism and ageism dehumanize people with dementia, and present their lives as disposable. </span> <span class="attribution"><span class="source">(Pixabay)</span></span></figcaption></figure><p>Over <a href="https://ltccovid.org/2020/04/12/mortality-associated-with-covid-19-outbreaks-in-care-homes-early-international-evidence/">80 per cent of Canada’s COVID-related deaths</a> are associated with nursing homes, <a href="https://www.cihi.ca/en/dementia-in-canada/dementia-in-canada-summary">with the majority of them being older persons living with dementia</a>. </p>
<p>Moreover, <a href="https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/deathsinvolvingcovid19inthecaresectorenglandandwales/deathsoccurringupto1may2020andregisteredupto9may2020provisional#deaths-involving-covid-19-among-care-home-residents">recent international research</a> suggests that COVID-19 public health restrictions have contributed to tens of thousands of additional deaths among people living with dementia in nursing home settings as a result of barriers in access to care and social isolation. </p>
<p>This is a national atrocity, and worse, one largely of our own making.</p>
<h2>The role of stigma</h2>
<p>From the beginning of the pandemic, what has been striking for us is how little mention there has been in the media regarding the role of stigma in shaping care practices and public health response strategies to COVID-19. </p>
<p>We are critical social scientists with expertise in dementia, ethics, and long-term care. Collectively our work is motivated by a shared concern about how stigma associated with dementia consistently enables and legitimizes restrictions on the freedom of individuals living with dementia, and denies them the opportunities to pursue life-enhancing relationships and activities. </p>
<figure class="align-center ">
<img alt="Rows of small white crosses planted in grass" src="https://images.theconversation.com/files/348803/original/file-20200722-15-14fqe35.jpg?ixlib=rb-1.1.0&rect=64%2C26%2C3492%2C2338&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/348803/original/file-20200722-15-14fqe35.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=417&fit=crop&dpr=1 600w, https://images.theconversation.com/files/348803/original/file-20200722-15-14fqe35.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=417&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/348803/original/file-20200722-15-14fqe35.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=417&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/348803/original/file-20200722-15-14fqe35.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=523&fit=crop&dpr=1 754w, https://images.theconversation.com/files/348803/original/file-20200722-15-14fqe35.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=523&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/348803/original/file-20200722-15-14fqe35.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=523&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A man looks out the window at the Camilla Care Community Centre in Mississauga, Ont., in May 2020, overlooking crosses marking deaths of multiple people that occurred during the COVID-19 pandemic.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Nathan Denette</span></span>
</figcaption>
</figure>
<p>We have traced this stigma to two cultural narratives about dementia: with memory loss there is a total erasure of the self; and the medicalization of memory loss, which reduces nursing home care to supporting basic physical safety and comfort. <a href="https://doi.org/10.1080/09581596.2018.1508822">Together these narratives perpetuate a collective representation of persons living with dementia as “non-persons.”</a> </p>
<p>This highlights the inherent ableism and ageism that dehumanizes and demarcates the lives of people living with dementia as disposable. Critique of this representation of people living with dementia as disposable must be a central part of public discussion and debate. Without that critical assessment, reform strategies are doomed to fall short of achieving the radical change that is needed.</p>
<h2>Conditions well-suited to COVID-19</h2>
<p>The toll of COVID-19 in Canada’s long-term care homes is the result of <a href="https://doi.org/10.1016/j.socscimed.2011.10.037">structural conditions that have long been identified by researchers in the field of aging studies</a>. COVID-19 has efficiently exploited these conditions, most notably the <a href="https://doi.org/10.1503/cmaj.201017">heavy reliance of nursing homes on a temporary and casual workforce, low staffing levels and inadequate care supplies</a>. </p>
<p>Analyses of these structural conditions have featured prominently in media coverage and <a href="https://www.policyalternatives.ca/publications/reports/re-imagining-long-term-residential-care-covid-19-crisis">related reform strategies</a> including: non-profit public provision; permanent employment and benefits for providers; minimum provider-resident ratios and integrating long-term care into the federal health portfolio. </p>
<p>While such analyses and reform strategies are critically important and are not to be disputed — indeed, we too have argued the need to address these structural conditions — our analysis pushes further. </p>
<h2>A new ethic of dementia care</h2>
<p>To achieve real transformation, we need system-level efforts to improve structural conditions in nursing homes, but we also need a new ethic of dementia care. </p>
<p>Specifically, we need an ethic that challenges stigma by broadening the duty of care to include fully supporting the capacity of individuals living with dementia for creativity, imagination and other positive potentialities. This would require the provision of life-enriching opportunities for persons living with dementia, and the support of their engagement with social life to the fullest extent possible. </p>
<p>This is consistent with <a href="https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html">Canada’s National Dementia Strategy</a> to eliminate stigma and create dementia-inclusive communities. It is a call for creative, visionary and transformative reform at a time of moral urgency.</p>
<figure class="align-center ">
<img alt="An elderly woman sits alone with her chin resting on her hand, looking out a window." src="https://images.theconversation.com/files/349810/original/file-20200728-23-1vbv2td.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/349810/original/file-20200728-23-1vbv2td.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=409&fit=crop&dpr=1 600w, https://images.theconversation.com/files/349810/original/file-20200728-23-1vbv2td.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=409&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/349810/original/file-20200728-23-1vbv2td.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=409&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/349810/original/file-20200728-23-1vbv2td.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=514&fit=crop&dpr=1 754w, https://images.theconversation.com/files/349810/original/file-20200728-23-1vbv2td.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=514&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/349810/original/file-20200728-23-1vbv2td.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=514&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">An elderly woman looks out from Maison Herron, a long-term care home in the Montréal suburb of Dorval on April 12, 2020.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Graham Hughes</span></span>
</figcaption>
</figure>
<p>It is our argument that a new ethic of care is urgently needed to ensure that the goals and standards of dementia care focus on supporting the life enrichment of persons living with dementia. This <a href="https://doi.org/10.1007/s11673-019-09898-1">requires a model</a> that draws on the fields and sub-fields of human rights, citizenship, political economy, feminist care ethics and “embodiment,” a field that aims to understand bodily experiences as ways of knowing. </p>
<p>This model is well suited to address the stigma associated with dementia and the structural inadequacies of nursing homes that are responsible for the neglect and harms that we have seen in this pandemic, as well as before COVID-19. </p>
<p>The model also recognizes that our bodies — our capacities, senses and socio-cultural dispositions — are central to self-expression and to our engagement with the world. With cognitive impairment, embodied self-expression becomes the primary means of communication and as such it is a matter of social justice. Consequently, this model holds states responsible for supporting these rights in practice through regulation and redistribution of social and economic resources.</p>
<p>We hope that social and health scientists, gerontologists, ethicists, policy-makers and care providers who are equally committed to revisioning nursing home care will agree, and devote resources to this collective effort. It’s time for a new ethic of care to replace the stigma of dementia.</p><img src="https://counter.theconversation.com/content/140817/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alisa Grigorovich receives funding from the Canadian Institutes of Health Research (Health System Impact Postdoctoral Fellowship).</span></em></p><p class="fine-print"><em><span>Pia Kontos receives funding from the Canadian Institutes of Health Research, the Alzheimer Society of Canada, AGE-WELL, and the Waugh Family Foundation.</span></em></p>The stigma that dehumanizes people living with dementia is reflected in the toll of COVID-19 in long-term care. Reforming long-term care must challenge this stigma with a new ethic of care.Alisa Grigorovich, Academic Fellow at the Centre for Critical Qualitative Health Research, University of TorontoPia Kontos, Associate Professor and Senior Scientist, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1249552019-10-09T22:35:46Z2019-10-09T22:35:46ZThe latest medical assistance in dying decision needs to be appealed: Here’s why<figure><img src="https://images.theconversation.com/files/296098/original/file-20191008-128648-1coihlo.jpg?ixlib=rb-1.1.0&rect=40%2C67%2C2941%2C1890&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Jean Truchon, right, looks on as lawyer Jean-Pierre Menard gives their reaction to a Québec judge overturning parts of provincial and federal laws on medically assisted dying on September 12, 2019.</span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Graham Hughes</span></span></figcaption></figure><p>The federal and Québec governments appear reluctant to appeal what’s known as the <a href="http://t.soquij.ca/o4WQp">Truchon decision</a>, which invalidated Canada’s “reasonable foreseeable death” and Québec’s “end of life” access criteria for medical assistance in dying. </p>
<p>The case was brought by Nicole Gladu and Jean Truchon, two Québec residents who each have physical disabilities that severely restrict their ability to complete daily tasks, remove or reduce significantly their mobility and cause intolerable pain. After being deemed ineligible to receive medical assistance in dying (MAID) because they were not at the end-of-life stage, <a href="https://www.cbc.ca/news/canada/montreal/quebec-assisted-dying-jean-truchon-nicole-gladu-1.5023505">they went to court to challenge the federal and Québec laws</a>. </p>
<p>In response, the <a href="https://www.cbc.ca/news/canada/montreal/medically-assisted-dying-law-overturned-quebec-1.5280702">Québec Superior Court struck down the law’s requirement that people can only receive medical assistance to end their lives when death is reasonably foreseeable</a>. Justice Christine Baudouin ruled that the law violated the right to life, liberty and security of the person, and discriminated against people with disabilities who aren’t near death.</p>
<p>Some health professional organizations in Québec have <a href="https://www.ledevoir.com/societe/563838/des-medecins-sur-l-aide-a-mourir">urged the federal and provincial government not to appeal the decision</a>. We disagree. We feel strongly that they should appeal. </p>
<p>And here is why: The ruling raises important questions about the application of the Canadian Charter of Rights and Freedoms that require clarification. The court’s ruling undermines Parliament’s power to issue broad legislation aimed at protecting the rights and interests of people who are elderly, ill or disabled, and at preventing suicide. We also believe the use of some of the evidence in the decision raises concerns about its reasonableness.</p>
<h2>The value and quality of a life</h2>
<p>First, Justice Baudouin rejected two explicitly stated goals of the <a href="https://laws-lois.justice.gc.ca/eng/AnnualStatutes/2016_3/FullText.html">federal medically assisted dying law</a>: the confirmation of the inherent and equal value of every person’s life, combined with the prevention of negative perceptions of the quality of life of persons who are elderly, ill or disabled; and the prevention of suicide. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/296101/original/file-20191008-128665-191o8zm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/296101/original/file-20191008-128665-191o8zm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=402&fit=crop&dpr=1 600w, https://images.theconversation.com/files/296101/original/file-20191008-128665-191o8zm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=402&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/296101/original/file-20191008-128665-191o8zm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=402&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/296101/original/file-20191008-128665-191o8zm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=505&fit=crop&dpr=1 754w, https://images.theconversation.com/files/296101/original/file-20191008-128665-191o8zm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=505&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/296101/original/file-20191008-128665-191o8zm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=505&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Nicole Gladu, who is incurably ill, filed an action in Québec Superior Court with Jean Truchon, arguing the eligibility requirements for physician-assisted death are too restrictive and violate their rights to the procedure.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Paul Chiasson</span></span>
</figcaption>
</figure>
<p>As a result, she failed to evaluate whether the broader societal impact of an expansive MAID regime could justify the current restriction to end-of-life. Parliament explicitly introduced this restriction to balance the autonomy of people requesting physician-assisted deaths with the need to protect the interests of vulnerable people, as well as the broader societal interests of avoiding negative perceptions and preventing suicide. </p>
<p>Baudouin only ruled on whether the restriction is necessary to protect vulnerable people from being induced to end their lives. She concluded that not all people with disabilities are vulnerable and that existing medically assisted death practices will suffice to offer that protection.</p>
<p>By focusing only on the need to protect vulnerable people, she did not sufficiently consider the more complex evidence related to negative perceptions of the quality of life of people who are elderly, ill or disabled, or the challenges related to suicide prevention.</p>
<h2>Disabled lives are worth living</h2>
<p>The disability community has long expressed concern about how laws and policies reflect views that disabled lives as not worth living. These laws can result in practices that undermine the rights and well-being of people with disabilities and may influence how people think about disabled lives and what health-care choices they should have. </p>
<p>There are historical precedents for this concern: policies portraying disabled lives as not worth living were <a href="https://www.thecanadianencyclopedia.ca/en/article/eugenics">prevalent during the eugenics movement in the 20th century</a>. In Canada, manifestations of the eugenics movement can be seen in the sexual sterilization laws designed to prevent people with disabilities from reproducing. </p>
<p>Even more recently, concerns have been expressed that gene editing casts a similar negative light on the existence of people with disabilities.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/_vdeeR5DOSo?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Activist Alice Wong speaks on ‘Resisting Abelism: Disabled People and Human Gene Editing’</span></figcaption>
</figure>
<p>There are also concerns, fuelled by developments in the few countries that provide access to MAID outside the end-of-life context, that being elderly and fragile is increasingly accepted as a reason for a physician-assisted death and that this may create subtle pressure. A recent analysis of Dutch assisted dying cases of patients with intellectual disabilities and autism <a href="https://link.springer.com/content/pdf/10.1186/s12910-018-0257-6.pdf">suggested that physicians’ value judgments and prejudices may have influenced how they evaluated their requests</a>. </p>
<p>By rejecting the broader goals of the law, the court failed to fully evaluate why people with disabling health conditions make their decisions. This includes the way in which law, funding policies, social-support mechanisms, access to alternative treatments and societal and personal perceptions interact. </p>
<p>These longer term and broader concerns, as well as the impact on suicide prevention, were not taken seriously enough by the Québec Superior Court in its proportionality assessment under Section 1 of the Charter. They should have been.</p>
<h2>An irreversible, life-ending act</h2>
<p>A related problem underlies discrimination concerns. Baudouin invoked two reasons why the restriction to end-of-life is discriminatory: one is that it makes a distinction between people who have a disability or disease that makes it difficult or impossible to commit suicide and people who do not have this difficulty. The second is that it distinguishes between people with disabilities who are at the end of their lives and those who are not. Both may be incapable of ending their own lives when they are suffering unbearably, yet only those at the end of life are being offered medically assisted deaths.</p>
<p>Baudouin is <a href="https://www.bccourts.ca/jdb-txt/SC/12/15/2012BCSC1587.htm">not the first to look at the law from the perspective of discrimination</a>.
But no majority of the Supreme Court has ever done so before, and perhaps for a reason.</p>
<p>We’re dealing with a criminal law-based limit on when health professionals can perform a radical life-ending procedure. To conclude that a policy limiting it to the end-of-life is discriminatory, it seems essential to look at all the evidence and arguments in support of this restriction. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1114347308496445441"}"></div></p>
<p>By limiting the goals of the legislation, Baudouin failed to look at the delicate balance between providing access to medically assisted dying, protecting people against premature death and preventing stereotypes about the value of a life with disabilities, and in the context of a practice that raises unique challenges. </p>
<p>Unlike other claims of discrimination, this is not about claims of access to an unconditional good such as essential medicines, or high-quality supportive care, or accommodation to empower people with disabilities. We are dealing with an irreversible, life-ending act. </p>
<p>While death may seem desirable in some circumstances, there are unique concerns about the impact of MAID, precisely on those who are already disadvantaged.</p>
<h2>Inhumane treatment in long-term care</h2>
<p>More explicitly, while the MAID law indeed requires consent, these irreversible choices about ending a life are made in a complex social, cultural and health-care context, where lack of access to adequate care, lack of social support and <a href="https://www.forbes.com/sites/civicnation/2019/08/07/enabling-sexual-and-reproductive-rights-for-people-with-disabilities/#29092dce7a59**">overall ableist stigma</a> have an impact on the choices people with disabilities may have. </p>
<p>Under the existing regime, we already see troubling examples of how a lack of good health care and support may push people towards a medically assisted death. For example, in British Columbia, <a href="https://www.cbc.ca/news/canada/british-columbia/alsbc-man-medically-assisted-death-1.5244731">Sean Tagert struggled to pay for 24-hour care at home until he eventually gave up in frustration and chose a medically assisted death</a>. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"789810267928616960"}"></div></p>
<p>Similarly, in Montréal, <a href="https://montrealgazette.com/news/local-news/saying-goodbye-to-archie-rolland">Archie Rolland, a landscape architect, decided to end his life instead of continuing to suffer at a long-term care facility</a> that he said was treating him inhumanely. </p>
<p>The law’s end-of-life criterion should create the necessary space to prioritize substantive support for people with disabilities. We need more complex discussions around support for the rights to life of people with disabilities, including those in palliative care, not a reduction of the opportunities for this support by expanding access to physician-assisted deaths.</p>
<h2>The judge’s analysis of the evidence</h2>
<p>There are also reasons why an appeal court should review the reasonableness of the court’s use of evidence.</p>
<p>The relevance of much of the evidence (for example from suicide experts and disability studies experts) was already undermined by the court’s restriction of the goals of the law. But even in the assessment of directly relevant evidence — for example in determining capacity and distinguishing MAID from suicide in the context of mental illness — Baudouin too easily brushed aside the government’s experts as having only theoretical knowledge and being prejudiced. </p>
<p>They included leading psychiatric experts, including one with unique expertise on capacity assessments in the few jurisdictions that allow medically assisted death for mental health reasons, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5097685/">who had published several analyses on the topic in peer-reviewed literature</a>.</p>
<p>In contrast, Baudouin appeared to take at face value two experts for the plaintiffs who currently conduct medically assisted death assessments in Canada’s system, but who have not done so in relation to mental illness.</p>
<p>It would send a terrible signal if both the federal and Québec governments concede that one judge can curtail Parliament’s power to promote broader societal interests in protecting people who are elderly, ill or disabled.</p>
<p>Given that we are currently in an election period, and that it will take time before a new government is put in place, it seems particularly important to create the time and space for careful assessment of our options in this complex area of policy-making. </p>
<p>In the interests of society, the attorneys general in both Québec and in Ottawa need to appeal this case.</p>
<p><em>This is an updated version of a story originally published on Oct. 9, 2019. This story clarifies that the “end of life” criteria is in Québec law.</em></p>
<p>[ <em><a href="https://theconversation.com/ca/newsletters?utm_source=TCCA&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=expertise">Expertise in your inbox. Sign up for The Conversation’s newsletter and get a digest of academic takes on today’s news, every day.</a></em> ]</p><img src="https://counter.theconversation.com/content/124955/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Trudo Lemmens was an expert witness for the federal Attorney General in the Truchon case. </span></em></p><p class="fine-print"><em><span>Laverne Jacobs is part of a team of researchers that has received funding from the Canadian Institutes of Health Research.</span></em></p>One judge must not be allowed to curtail parliament’s power to promote broader societal interests and protect people who are elderly, ill and disabled.Trudo Lemmens, Professor of Health Law and Policy, University of TorontoLaverne Jacobs, Associate Dean (Research & Graduate Studies) and Associate Professor, Faculty of Law, University of WindsorLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/820472017-08-27T23:19:34Z2017-08-27T23:19:34ZThink disability is a tragedy? We pity you<figure><img src="https://images.theconversation.com/files/183352/original/file-20170824-24034-1lws59m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Disability prejudice in the classroom can teach children early on that some lives are more worthy than others.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>You pick your child up at school and see her hanging out with a child with autism. Your reaction is: A) pride, B) confusion, C) concern, D) pity. If you said yes to any of the above you could have ableism. </p>
<p>In schools, disability prejudice impacts opportunities for connection and learning for all children. Another word for it is “ableism” — a form of <a href="https://www.merriam-webster.com/dictionary/ableism">discrimination that favours able-bodied people</a>. It has long permeated our culture through stereotypes — from hunchback movie villains to the idea of the “<a href="http://mediasmarts.ca/diversity-media/persons-disabilities/common-portrayals-persons-disabilities">supercrip</a>” that defies all odds.</p>
<p>Ableism contributes to the isolation of children with disabilities. It encourages students without disabilities to see relationships with their disabled peers as helper-helpee relationships, rather than reciprocal friendships. Worst of all, ableism teaches children early on that some lives are more worthy than others. This can have deadly consequences — evidenced by the <a href="https://disabilityvisibilityproject.com/2015/02/02/living-archives-on-eugenics-in-western-canada">eugenics movement</a> of the early 20th century, and by more recent events such as the <a href="https://theconversation.com/why-has-japans-massacre-of-disabled-gone-unnoticed-for-answers-look-to-the-past-64201">2016 massacre</a> in a home for the disabled in Japan. </p>
<p>As a society, we need to <a href="https://mic.com/articles/121653/6-forms-of-ableism-we-need-to-retire-immediately">say no to ableism</a>. We must see disability for what it is — <a href="https://www.facebook.com/pg/projectmyvalue/about">a natural part of human experience</a>, rather than something to be feared.</p>
<p>We are two university professors, working in disability ethics and in education, who met in high school. Our friendship was very nearly destroyed by ableism. We offer <a href="http://bit.ly/1mfRmNp">our story as an illustration</a> — of how disability prejudice can afflict all kids, and how to avoid it, in the classroom and at home.</p>
<h2>A “normal” friend</h2>
<p>We were both giving mainstream education one last chance when we met in Grade 11 English at Alberta College. What brought us together was our mutual (warped) sense of humour and bewilderment over why some people thought being just like everyone else was a good thing.</p>
<p>So, how did ableism almost destroy our friendship?</p>
<p>Well, there was the explicit ableism. A few months after we met, a nurse of Heidi’s told her, “Michelle’s just helping you because she feels sorry for you. You can’t have a normal friend.” Heidi started to pull away. Michelle felt like she had done something wrong. Eventually, Heidi told Michelle what the nurse had said. That was the first of many close encounters we’ve had with ableism.</p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/183063/original/file-20170822-13644-mlupwn.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/183063/original/file-20170822-13644-mlupwn.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=808&fit=crop&dpr=1 600w, https://images.theconversation.com/files/183063/original/file-20170822-13644-mlupwn.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=808&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/183063/original/file-20170822-13644-mlupwn.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=808&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/183063/original/file-20170822-13644-mlupwn.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1015&fit=crop&dpr=1 754w, https://images.theconversation.com/files/183063/original/file-20170822-13644-mlupwn.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1015&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/183063/original/file-20170822-13644-mlupwn.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1015&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Doctor Loveless in the TV show The Wild Wild West is a villainous dwarf.</span>
<span class="attribution"><span class="source">(Wikimedia Commons)</span></span>
</figcaption>
</figure>
<p>Then there were people who didn’t bother to ask Heidi to repeat herself when they did not understand her. Others would simply ignore Heidi and talk to Michelle. When we’d go to restaurants, servers asked Michelle what Heidi wanted to order. Most memorably, there was the shopping mall Santa — who asked Michelle what Heidi’s name was. </p>
<p>But there was also the implicit ableism. Michelle went from being seen as poorly behaved to being seen as angelic, just because she’d befriended Heidi, the disabled kid. Yet Heidi was given no credit for getting Michelle to school on time every day. </p>
<p>Michelle knew she needed to take Heidi’s coat off and take her books out. (This was the 1980s; Heidi didn’t have an aide at school.) Heidi developed her very own behaviour modification program. She ran over Michelle’s feet with her very heavy power chair if she was late. She offered her a coffee or cookie from the cafeteria if she was on time.</p>
<h2>Learning together</h2>
<p>Heidi had an amazing occupational therapist that worked with both of us. She booked us an independent living suite to learn how to take care of each other over a week. We learned how to cook together (which did result in a visit from the fire department). Michelle learned how to dress Heidi, feed her and take her to the washroom. </p>
<p>Heidi learned to tell Michelle to drink her coffee before she attempted to help her with anything. “It’s not safe before your coffee. I can wait. Go drink your coffee.” By the end of Grade 11, we flew to Vancouver and spent five days on our own.</p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/183061/original/file-20170822-13660-6c2xgl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/183061/original/file-20170822-13660-6c2xgl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=771&fit=crop&dpr=1 600w, https://images.theconversation.com/files/183061/original/file-20170822-13660-6c2xgl.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=771&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/183061/original/file-20170822-13660-6c2xgl.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=771&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/183061/original/file-20170822-13660-6c2xgl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=969&fit=crop&dpr=1 754w, https://images.theconversation.com/files/183061/original/file-20170822-13660-6c2xgl.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=969&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/183061/original/file-20170822-13660-6c2xgl.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=969&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The blindness of superhero Daredevil, from Marvel Comics, has enhanced his other senses to superhuman levels.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>We grew together and encouraged each other to do what many did not expect us to do — go to university and eventually become academics. We are in different fields but have a similar commitment to expanding research-based public conversations and policy aimed at creating more equitable and inclusive societies.</p>
<p>Today, 33 years after we met, we see some changes in attitudes, but we still often encounter deeply entrenched <a href="http://disabledfeminists.com/2010/11/19/what-is-ableism-five-things-about-ableism-you-should-know/">ableism</a>. This is not surprising given that from earliest childhood, we are inundated with <a href="http://courses.washington.edu/intro2ds/Readings/2_Nelson-stereotypes.pdf">disability stereotypes</a>, such as telethon kids whose survival depends on the charity of able-bodied people. As we get older, we watch news stories about burdensome disabled people or the “<a href="http://mediasmarts.ca/diversity-media/persons-disabilities/common-portrayals-persons-disabilities">supercrip</a>” who achieves remarkable things. And many of the insults in the English language <a href="http://www.disabilityandrepresentation.com/2013/09/14/ableist-language/">are based on disability</a>. </p>
<h2>How to de-ableize yourself</h2>
<p>Approximately <a href="http://www.who.int/disabilities/world_report/2011/report/en/">15 per cent of the world’s population</a> has a disability, and that number is increasing as the population ages. Most people will acquire disabilities at some point. Signatories of the <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> agree to foster respect for the rights of people with disabilities from early childhood on. </p>
<p>But how realistic is it to expect able-bodied people to have the capacity to implement non-ableist policies and practices? </p>
<p>If we want to educate children about the harmfulness of ableism, we need to start with de-ableizing adults. There are many <a href="http://www.pattan.net/Videos/Browse/Training%20Series/Starting+Points+and+Possibilities+Promoting+Inclusion+Learning+and+Relationships+for+Students+with+Complex+Needs">strategies teachers can use in the classroom</a> — to promote inclusion, learning and relationships between students with and without disabilities. But this is not just the job of teachers. It starts at home. </p>
<p>Think about fears you have about disability and where those fears come from. Think about what values are at play in deciding what makes for a good school, workplace or community. How might the values be different if people with disabilites were at decision-making tables?</p><img src="https://counter.theconversation.com/content/82047/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>Two university professors explore their unlikely longtime friendship, providing lessons for parents of both “abled” and disabled children today.Heidi L. Janz, Adjunct Professor of Disability Ethics, John Dossetor Health Ethics Centre, University of AlbertaMichelle Stack, Associate Professor, University of British ColumbiaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/638572017-03-13T15:31:28Z2017-03-13T15:31:28ZWithout European intervention, equality for disabled people in Britain would be a distant dream<p>The representation of disabled people in government has never been more important. In 2014, <a href="https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/437481/family-resources-survey-2013-14.pdf">19% of British residents</a> said that they were disabled. The country also has an ageing population and <a href="https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/437481/family-resources-survey-2013-14.pdf">42% of state pension age adults</a> – 5m people altogether – are living with disabilities.</p>
<p>Before the EU referendum, <a href="https://www.theguardian.com/society/2016/jun/14/brexit-nhs-health-social-care-disabled-people-eu-referendum">fears abound</a> that the laws in place to help and protect the lives of disabled people <a href="https://theconversation.com/why-brexit-could-be-bad-news-for-disabled-people-56322">would be disregarded</a>, and future progress stilted. We have yet to see what impact Brexit will have, but <a href="http://www.tandfonline.com/doi/full/10.1080/13572334.2014.975512">my own research has revealed</a> one extremely concerning fact: parliament is, and has been for some time, filled with institutionalised ableism, and without the EU’s help, the situation for disabled people may become very dire indeed.</p>
<h2>Low priority</h2>
<p>Even at the very start of policy and law development, disability is a very low priority. Looking just at early day motions (EDMs) – which allows MPs to voice their opinions on certain issues with no expectation to toe the party line – disability ranks behind gender and age among the protected characteristics that will get attention from lawmakers.</p>
<p>The motions give a good insight into MPs’ priorities. For example, Chris Ruane, former MP for the Vale of Clwyd, in 2009 <a href="http://www.parliament.uk/edm/2008-09/1116">specifically demanded</a> “that this house notes … heart disease, diabetes, stroke and kidney disease, remain the number one cause of disability in the UK … and calls on the government to work with the voluntary sector … to ensure that the best care is available to those people affected”. </p>
<p>Though there was some increase in the number of EDMs that were proposed for the benefit of “disabled peoples”, the rate of change has been slow. When you compare the number of disability/disabled people’s EDMs in the 1992–97 parliament with the 2005–10 parliament the growth is negligible – just 3.5 percentage points.</p>
<p>It’s clear just from these motions that disability issues are far from a mainstream policy priority for most MPs. Even though each constituency would have a significant number of disabled people, less than a third of MPs put forward a specific disability EDM between 1990 and 2012.</p>
<p>There are also big differences in each political party’s record of proposing disability/disabled people EDMs. Almost two-thirds of the total proposed between 1990 and 2012 were tabled by Labour Party backbenchers. Liberal Democrat MPs put forward just under a quarter, while Conservative MPs accounted for less than 10%. The rest were put forward by “others” such as the Scottish National
Party, and Plaid Cymru. </p>
<p>Looking at how these motions were framed, most were concerned with securing a decent level of living for disabled people, followed by tackling discrimination, and raising awareness of disabled people’s rights. When broken down by policy area the lead topics were taxation, pensions, and social security (just over a quarter of the total); health (just over a fifth); transport; employment; and education. The lead topic here points to the economic marginalisation and poverty experienced by disabled people. The others indicate that the associated problems disabled people experience span all areas of social welfare.</p>
<h2>Institutionalised ableism</h2>
<p>This research is more than just stats. It confirms a clear history of marginalisation and representational failings reaching back as far as World War II. Until 1970, there were just four main laws put in place that were <a href="https://www.theguardian.com/global-development-professionals-network/ng-interactive/2016/jun/22/disability-rights-around-the-world-from-1944-to-the-present-day">concerned with disability</a>. This marginalisation continued through to the 1990s when a small number of statutes were passed – though it must be noted that these were <a href="http://www.huffingtonpost.co.uk/rosemary-frazer-/disabled-discrimination_b_8471842.html">landmark pieces</a> of legislation, such as the 1995 Disability Discrimination Act, for example. </p>
<p>Overall, disabled people’s representation is far from a mainstream issue in Westminster law-making. In fact it would be fair to say that without European intervention <a href="http://ec.europa.eu/social/main.jsp?catId=1137">from the EU</a> and <a href="http://www.echr.coe.int/Documents/FS_Disabled_ENG.pdf">European Convention on Human Rights</a>, equality for disabled people would still be falling behind.</p>
<p>The 2010 Equality Act, the UN Convention on the Rights of Persons with Disabilities (ratified by the UK in 2009) and EC Directives on equality require the promotion of equality for disabled people in the exercise of public functions – including parliamentary representation, policy and law-making. It is in this context that Brexit is revealed as a wholly negative development for disabled people. </p>
<p>European legislation has been a key driver of equality for disabled people and others with protected characteristics in the UK. Going forward, vigilance will be an absolute necessity to ensure there is no reduction in disabled people’s rights and protections when the UK leaves the EU, and the Conservative government moves forward with replacing the European Convention of Human Rights with <a href="https://theconversation.com/the-eu-protects-liberty-but-a-british-bill-of-rights-would-endanger-it-50870">a domestic bill of rights</a>. </p>
<p>Disability rights campaigners, already a strong voice, will have their work cut out for them going forward. Meanwhile MPs will need to sit up and realise that these rights must be safeguarded. Discrimination cannot continue.</p><img src="https://counter.theconversation.com/content/63857/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Economic and Social Research Council Award No. ES/L009099/1</span></em></p>New research has found the UK parliament is fraught with institutionalised ableismPaul Chaney, Professor of Policy and Politics, Cardiff UniversityLicensed as Creative Commons – attribution, no derivatives.