tag:theconversation.com,2011:/us/topics/disability-violence-22972/articlesDisability violence – The Conversation2021-05-07T12:44:05Ztag:theconversation.com,2011:article/1584072021-05-07T12:44:05Z2021-05-07T12:44:05ZUS prisons hold more than 550,000 people with intellectual disabilities – they face exploitation, harsh treatment<figure><img src="https://images.theconversation.com/files/399053/original/file-20210505-15-1fhl6wk.jpg?ixlib=rb-1.1.0&rect=18%2C9%2C6211%2C4138&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The rate of intellectual disabilities is disproportionately high among incarcerated populations.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/prisoner-at-the-bolivar-county-correctional-facility-waits-news-photo/1315034536?adppopup=true">Spencer Platt/Getty Images</a></span></figcaption></figure><p>Prison life in the U.S. is tough. But when you have an <a href="https://www.psychiatry.org/patients-families/intellectual-disability/what-is-intellectual-disability">intellectual, developmental or cognitive disability</a> – as hundreds of thousands of Americans behind bars do – it can make you especially vulnerable.</p>
<p>In March, the Bureau of Justice Statistics, the federal agency tasked with gathering data on crime and the criminal justice system, <a href="https://www.bjs.gov/content/pub/pdf/drpspi16st.pdf">published a report</a> that found roughly two in five – 38% – of the 24,848 incarcerated people they surveyed across 364 prisons reported a disability of some sort. Across the entire incarcerated population, that translates to some 760,000 people with disabilities living behind bars.</p>
<p>Around a quarter of those surveyed reported having a cognitive disability, such as difficulty remembering or making decisions. A similar proportion reported at some point being told they had attention deficit disorder, and 14% were told they had a learning disability.</p>
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<p>As a <a href="http://catalog.college.emory.edu/department-program/faculty.php?YToxOntzOjI6ImlkIjtzOjM6Ijc5MyI7fQ==">scholar who has researched disability</a> in prison and conducted in-depth interviews with several adults with intellectual and developmental disabilities in the criminal justice system, I’m all too aware of the problems that incarcerated people with disabilities face. Prisoners with these disabilities are at greater risk of serving <a href="https://www.semanticscholar.org/paper/An-Estimate-of-the-Prevalence-of-Autism-Spectrum-in-Fazio-Pietz/c9423ebfa2f6fbff89b1370b4d7f7b0f26ff831b">longer</a>, <a href="https://journals.sagepub.com/doi/10.1177/0032855597077004002">harder sentences</a> and being exploited and <a href="https://law.asu.edu/sites/default/files/pdf/academy_for_justice/Reforming-Criminal-Justice_Vol_3.pdf">abused</a> by prison staff or other incarcerated people. </p>
<h2>Stigma and crimes of survival</h2>
<p>The rate of both physical and intellectual disability among the prison population is disproportionately high. According to the Centers for Disease Control and Prevention, <a href="https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html">26% of Americans</a> report any kind of disability. Of those, 10.8% reported a cognitive disability.</p>
<p>This is less than half of the proportion of those in prisons. And rates appear to be on the rise – in 2011-2012, <a href="https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html">32% of people incarcerated in prisons reported a disability</a>, with 19% stating a cognitive disability.</p>
<p>High as they are, these rates are likely to be an underestimate. They are based on self-reports, and research has shown <a href="https://doi.org/10.1352/2009.47:13-23">many people fail to report a disability</a> – particularly an intellectual or cognitive disability – to avoid stigma or because they simply don’t know they have one. </p>
<p>The Bureau of Justice Statistics has also found that people with cognitive, intellectual and developmental <a href="https://www.bjs.gov/content/pub/pdf/dpji1112.pdf">disabilities are more prevalent in jails</a> – where people are sent immediately after arrest, to await trial or to serve a sentence of one year or less – than prisons. Jails tend to be associated with what have been called “<a href="http://humantollofjail.vera.org/legal-perils-of-homelessness/">crimes of survival</a>,” such as shoplifting and loitering. These offenses are linked to unemployed people and people experiencing homelessness – communities in which <a href="https://doi.org/10.1111/j.1365-2788.2010.01366.x">rates of disabilities are higher</a>.</p>
<p>As a result, a <a href="https://www.prisonpolicy.org/blog/2017/08/23/disability/">disproportionate amount of people with disabilities</a> enter America’s criminal justice system. I see this in my research on intellectual and developmental disabilities – diagnoses like autism, fetal alcohol syndrome, ADD/ADHD, Down syndrome, and general cognitive impairment are common in our criminal justice system.</p>
<h2>In jail, no one listens</h2>
<p>Between 2018 and 2019, I <a href="https://doi.org/10.1016/j.ssaho.2021.100122">interviewed 27 people with these disabilities</a> about their interaction with the criminal justice system. Eighteen reported having been arrested and/or incarcerated.</p>
<p>Many spoke of the harm and difficulties they face throughout the criminal justice system, from courts to being behind bars.</p>
<p>One man I interviewed who had various learning and attention-related disabilities and was in special education as a child told me: “I was in jail one time [because] when I didn’t understand the questions the judge was asking me, and she sentence me to three months in [county jail] because I didn’t understand.” Officially, this was for disorderly conduct. </p>
<p>Confusion in prison and jail can lead to <a href="https://www.themarshallproject.org/2020/11/02/prison-is-even-worse-when-you-have-a-disability-like-autism">violence or danger</a>. Needing time to process instructions, particularly in high-stress situations, can be interpreted as obstinacy by staff and officers in charge. One middle-aged man who experienced incarceration on a few occasions told me that if you can’t process instructions, sometimes you are physically forced to comply. He provided the example of seeing someone with mental health needs not going to the shower when requested: “In jail, they don’t have time for that. They’ll just throw you in the shower. They’re not supposed to, but I’ve seen that before.” </p>
<p>Further, being seen as obstinate can lead to disciplinary reports in prison or jail, which could result in added time to someone’s sentence or the removal of certain privileges. It could also <a href="http://jaapl.org/content/38/1/104">result in solitary confinement</a> – something known to exacerbate and create <a href="https://doi.org/10.1086/696041">mental health concerns</a> and which has been labeled as torture by the <a href="https://news.un.org/en/story/2011/10/392012-solitary-confinement-should-be-banned-most-cases-un-expert-says">United Nations</a> and <a href="https://www.hrw.org/news/2012/06/18/us-look-critically-widespread-use-solitary-confinement#">human rights groups</a>. One <a href="https://www.nyaprs.org/e-news-bulletins/2018/11/30/study-over-4-000-prisoners-w-serious-mental-illness-are-held-in-solitary-confinement">study from 2018 found</a> that over 4,000 people with serious mental health concerns were being held in solitary confinement in the U.S. Again, this is likely to be an underestimate.</p>
<p>Incarcerated people with intellectual, developmental and cognitive disabilities <a href="https://doi.org/10.1080/14789949.2015.1062994">risk being exploited</a> by both officers and fellow inmates. One person I interviewed who had experienced incarceration said officers look for those who have a disability by noting who only watches TV and never reads, marking them for exploitation. He went on to say that “some of the corrections officers, they be doing things they ain’t got no business doing. So they’ll slide up onto the disability boy and use him, you know, because he’d making him feel like ‘This is my dog. This is my boy right here. Come and do this for me.’ And they’ll run and do it. So I think people with disabilities are used more by deceptive corrections guards than people that read.”</p>
<p>Rates of these disabilities are even higher among incarcerated women, according to the Bureau of Justice Statistics report. This might be related to the fact that women have much <a href="http://doi.org/10.3390/ijerph17051725">higher histories of abuse and trauma</a>, or because they are <a href="https://ramh.org/guide/gender-differences-in-mental-health">more willing to report these disabilities</a>.</p>
<p>One woman with cerebral palsy and unidentified intellectual disabilities I spoke with said that in most jails she’d report her disability, but no one would listen to her.</p>
<h2>Hidden behind bars</h2>
<p>The disproportionate rates of cognitive, intellectual and developmental disability in U.S. prisons and jails have rarely formed part of the conversation on reforming our police and prison system. When discussing mental health in prison, often the <a href="https://www.treatmentadvocacycenter.org/evidence-and-research/learn-more-about/3695">focus is on psychiatric disabilities</a>, like schizophrenia and bipolar disorder. There is good reason for this – people with these kinds of disabilities are also at <a href="https://www.treatmentadvocacycenter.org/evidence-and-research/learn-more-about/3695">high risk for incarceration</a>.</p>
<p>But, I believe, it has meant that the needs of incarcerated people with intellectual and developmental disabilities have been neglected. At present, there is <a href="http://doi.org/10.1016/j.psychres.2017.12.036">little support for people with these disabilities</a> in incarcerated settings. Prisons and jails could ensure staff are better trained to interact with people with intellectual and developmental disabilities.</p>
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<p>We could also explore strategies to divert people with intellectual, learning and cognitive disabilities away from the criminal justice system. Cities are increasingly exploring alternatives to police for responding to mental health crises, like the <a href="https://whitebirdclinic.org/cahoots/">CAHOOTS model in Oregon</a> in which a medic and mental health expert are deployed as first responders. Additionally, there could be more attention to these disabilities in <a href="https://bja.ojp.gov/sites/g/files/xyckuh186/files/Publications/CSG_MHC_Research.pdf">mental health courts</a>, which combine court supervision with community-based services. They have been shown to be <a href="https://doi.org/10.1016/j.jcrimjus.2010.11.003">somewhat effective at reducing recidivism</a>, but which <a href="http://doi.org/10.1007/s10979-010-9250-4">seem to focus on people</a> with schizophrenia, bipolar, major depression or PTSD.</p>
<p>But before that, awareness about the presence of disability in incarcerated settings needs to be higher. The plight of incarcerated prisoners with intellectual disabilities has long been an issue lost amid America’s sprawling prison network.</p><img src="https://counter.theconversation.com/content/158407/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jennifer Sarrett does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A quarter of prisoners report a cognitive, intellectual or developmental disability. But the true figure could be even higher.Jennifer Sarrett, Lecturer, Center for Study of Human Health, Emory UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/989082018-06-29T10:52:49Z2018-06-29T10:52:49ZBefore he was murdered, here is what a disabled asylum seeker had to say about Britain’s ‘hostile environment’<p>Kamil Ahmad, a disabled man, fled his home in Iraqi Kurdistan after being tortured and imprisoned. He arrived in Bristol, England, in 2012 hoping to find peace and safety, but his application for asylum was refused. On July 7, 2016, Kamil <a href="https://www.theguardian.com/commentisfree/2017/oct/18/murdered-asylum-seeker-kamil-ahmad-failed-britain">was murdered</a>. This was almost exactly three years after the murder of another disabled refugee from Iran, <a href="https://www.theguardian.com/global/2013/nov/28/bijan-ebrahimi-murdered-victim-impact-statement">Bijan Ebrahimi</a>, also in Bristol. </p>
<p>Official enquiries have taken place into the two murders, which were both found to be racially motivated. The <a href="https://bristolsafeguarding.org/adults/safeguarding-adult-reviews/bristol-sars/kamil-ahmad-and-mr-x-june-2018/">serious case review</a> into Kamil’s murder, published in June 2018, found that he was failed by many agencies and that the fatal assault on him “could have been avoided”. In light of his experience, it concluded: “It is timely for agencies in Bristol to consider whether an unconscious bias affects how they respond to the designation ‘refused’ (or ‘failed’) asylum seeker.”</p>
<p>Bijan had a more secure immigration situation than Kamil, as he had been granted refugee status. However, an enquiry found evidence of <a href="https://www.bristol.gov.uk/documents/20182/35136/Multi-agency+learning+review+following+the+murder+of+Bijan+Ebrahimi">institutional racism</a> which led to police assumptions that Bijan was to blame for the assaults he reported, and a failure to deal adequately with his complaints. </p>
<p>The precarious existence of asylum seekers, particularly those who are disabled and those whose cases have been refused, cannot simply be attributed to individual acts of hostility or to the oversight of individual agencies. Rather, it’s the result of deliberate government policy. The hostile environment for immigration is designed to be hostile – and this deliberate hostility is being rapidly <a href="https://www.theguardian.com/commentisfree/2018/apr/26/hostile-environment-britain-disabled-people-windrush-benefits">extended</a> to wider sections of the population.</p>
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<a href="https://theconversation.com/hostile-environment-the-uk-governments-draconian-immigration-policy-explained-95460">Hostile environment: the UK government's draconian immigration policy explained</a>
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<p>In an <a href="https://youtu.be/uxadnQeHWnk">interview</a> I carried out with Kamil in 2012 he spoke of his despair at the scale of injustice he was experiencing in Britain. He drew parallels between his life as a disabled refused asylum seeker in Britain and his time in Abu Ghuraib prison in Iraq. He was stuck, unable to return to the place he had fled, but with his basic rights denied in Britain.</p>
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<h2>A disabling system</h2>
<p>Many people involved in the asylum sector describe it as disabling. Some arrive in the UK as disabled people, but others become disabled after they reach the UK. Several asylum seekers who I’ve interviewed as part of my research describe the system as psychological torture. And if a person is tortured then symptoms are inevitable. </p>
<p>The despair one person who I interviewed felt led him to jump off a bridge. This caused long-term physical injury alongside the ongoing mental distress. Another person developed serious back problems after being made destitute and having to sleep on park benches. </p>
<p>The denial of rights to asylum seekers, including disabled asylum seekers, in Britain has been increasing, under governments of all political colours. Since the 1951, the <a href="http://www.unhcr.org/uk/1951-refugee-convention.html">Convention on the Status of Refugees</a> which protected the rights of refugees internationally, there have been 16 immigration acts in Britain, each reducing the rights of migrants further. These laws combine with what appears to be wider acceptance that some people deserve human rights but others do not. If our commitment to universal human rights is broken, it’s an easy step for rights to be removed from ever more people.</p>
<h2>Rights gradually removed</h2>
<p>The denial of rights has been gradually extended from one group to another. The 1999 <a href="https://www.legislation.gov.uk/ukpga/1999/33/part/VI">Immigration and Asylum Act</a> removed the right for asylum seekers to receive mainstream benefits, including disability benefits. The support available to asylum seekers was set at below income support – the minimum deemed necessary for citizens – with no consideration of the costs associated with being disabled. People also lost the right to choose where to live and can be dispersed to areas of cheap housing, away from family, friends and support. </p>
<p>More than a decade later, the 2012 <a href="http://www.legislation.gov.uk/ukpga/2012/5/contents/enacted">Welfare Reform Act</a> drastically cut support available to all disabled citizens. It introduced the “<a href="https://www.theguardian.com/society/2016/jan/27/the-bedroom-tax-explained">bedroom tax”</a>, which reduced housing benefit for people deemed to have an “extra” bedroom and forced some to move to to cheaper housing. This had disproportionate impact on those disabled people who require space for a carer or family member. </p>
<p>Together with wider cuts to services and support, this led a <a href="http://researchbriefings.parliament.uk/ResearchBriefing/Summary/CBP-7367">UN investigation</a> to report “<a href="https://www.theguardian.com/society/2017/aug/31/un-panel-criticises-uk-failure-to-uphold-disabled-peoples-rights">grave and systematic</a> violations of the rights” of disabled people.</p>
<p>There have been many protests about the wider treatment of disabled people. Yet even now, similarities with policies imposed on disabled asylum seekers more than a decade earlier are rarely mentioned. It’s as if different standards are acceptable for asylum seekers compared with the broader citizenry.</p>
<p>I suggest that the removal of rights from disabled citizens is the price we are paying for our collective lack of resistance when the rights of asylum seekers were removed. If, back in 1999, we’d had a movement strong enough to resist the removal of rights from disabled asylum seekers, then perhaps similar policies would not have been imposed on disabled citizens more than a decade later. </p>
<p>Since these tragic events took place, there has been growing determination to address the injustice which Kamil and Bijan faced. An <a href="http://www.disabilitymurals.org.uk/kamil_ahmad_event.php">initiative</a> to build a broader movement of solidarity in their honour has had the support of 18 different organisations, including disabled peoples groups, the asylum sector, trade unions, mosques and the University of Bath.</p><img src="https://counter.theconversation.com/content/98908/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rebecca Yeo receives funding from the Economic and Social Research Council. </span></em></p>Two murders of a disabled asylum seeker and a disabled refugee in Bristol showed how precarious life has become for people on the margins.Rebecca Yeo, PhD Candidate, University of BathLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/642012016-08-30T03:06:10Z2016-08-30T03:06:10ZWhy has Japan’s massacre of disabled gone unnoticed? For answers, look to the past<figure><img src="https://images.theconversation.com/files/135820/original/image-20160829-17887-1g844f0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Is there an ongoing ambivalence toward people living with disabilities?</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/emeryjl/6372976395/in/photolist-aHaaRn-bupVva-bupSgp-btrz1X-bupUhP-btrBzM-9KX5mF-f6ght8-btrzGz-btrC1B-btrB8F-btrA8g-btrz7H-6sFqgJ-btrBPe-burcpr-bur8Pi-bur3pn-bupZBg-bupWD8-burkVP-burpVk-bur8Bp-bur8Vx-buq8Az-bur4gT-buq9R8-bupY1D-buray6-buraJZ-bur9zn-bupUNB-burmKP-burbEz-bupY8T-buq278-buq99r-bur9XX-bupWR6-burarZ-buq9Bp-bur6aD-buqa8Z-burjVT-burmcF-buqa1z-burmxn-bura3n-buroJZ-bupUVK">James Emery</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p>On July 26, 2016 <a href="https://www.theguardian.com/world/live/2016/jul/25/japan-knife-attack-live-updates">a man wielding a knife</a> broke into Tsukui Yamayuriena, a home for the disabled outside of Tokyo and brutally murdered 19 people as they slept, while injuring another 26. Afterwards, he turned himself in to a local police station, with the explanation:</p>
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<p>“It is better that the disabled disappear.” </p>
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<p>Disability advocates have expressed dismay that the massacre – Japan’s deadliest mass killing since World War II – has received so little attention relative to mass killings in Paris, Nice, Orlando, Kabul and Baghdad. </p>
<p>Australian <a href="http://www.smh.com.au/lifestyle/news-and-views/opinion/why-did-the-mass-murder-of-19-disabled-people-in-japan-barely-rate-20160801-gqiphz.html">disability activist Carly Findlay wrote</a>, </p>
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<p>“There was no hashtag. No public outcry. Not even prayers.” </p>
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<p><a href="https://psmag.com/violence-disability-and-the-lessons-of-sagamihara-fcd790a4285d#.jkuwr7z0j">Disability rights journalist David Perry</a> pointed out the irony that the attack came just one day before the anniversary of the Americans with Disabilities Act.</p>
<p>This sad coincidence is evidence of an ongoing ambivalence toward people with disabilities. On the one hand, they are increasingly visible – often as <a href="http://www.salon.com/2015/02/02/inspiration_porn_is_not_okay_disability_activists_are_not_impressed_with_feel_good_super_bowl_ads/">sources of inspiration for the able-bodied</a>. And there are many signs of progress, such as <a href="https://www.ada.gov/cguide.htm">recognition of their legal rights</a> and more <a href="http://www.pbs.org/parents/education/learning-disabilities/inclusive-education/">inclusive schools</a>. </p>
<p>On the other, disabled people continue to face <a href="http://www.huffingtonpost.com/tiffiny-carlson/discrimination-people-disabilities-_b_4509393.html">prejudice</a>, <a href="http://www.bbc.com/news/education-11139534">social isolation</a>, and <a href="http://www.usnews.com/news/blogs/data-mine/2015/05/22/americans-with-disabilities-more-often-victims-of-violent-crimes">violence</a>.</p>
<p>I have spent over 20 years researching and writing about the history and culture of people with disabilities.</p>
<p>My research helps me to see continuities between the tragedy in Japan and <a href="http://archive.adl.org/education/curriculum_connections/fall_2005/fall_2005_lesson5_history.html">the practice of institutionalization</a> which started in the U.S. and Europe, and remained the primary way for managing people with disabilities for over a century. Regrettably, that practice still continues in many parts of the world. </p>
<h2>Hiding people who live with disabilities</h2>
<p>In Japan <a href="https://books.google.com/books?id=xZarozd-CCoC&pg=PA160&lpg=PA160&dq=japan+institutionalization+of+people+with+intellectual+disabilities&source=bl&ots=EfbniD9p_9&sig=495NDXdQYlWV4YObzy3jEC-DpXg&hl=en&sa=X&ved=0ahUKEwjz1tWrntDOAhUDJh4KHU-uDfEQ6AEIMTAC#v=onepage&q=japan%20institutionalization%20of%20people%20with%20intellectual%20disabilities&f=false">there is a deep stigma</a> against those who are unable to work. Indeed, it is still common to institutionalize people with disabilities, intellectual or otherwise, that impede their productivity. </p>
<p>By warehousing people with disabilities, institutions send the message that they need to be segregated and managed. It becomes easy for their differences to be seen as a shameful and frightening secret that happens to other, less worthy people.</p>
<p>In truth, disability is an aspect of ordinary experience that touches all people and all families at some point in the cycle of life. </p>
<p>As disability studies scholar <a href="https://www.radcliffe.harvard.edu/people/rosemarie-garland-thomson">Rosemarie Garland Thomson</a> <a href="http://www.nytimes.com/2016/08/21/opinion/sunday/becoming-disabled.html?_r=0">notes</a>,</p>
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<p>“The fact is, most of us will move in and out of disability in our lifetimes, whether we do so through illness, an injury or merely the process of aging.” </p>
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<p>Yet, fear of our own vulnerability and of the stigma that accompanies disability leads us to deny this basic truth. It is easier to see the disabled as a faceless population than as individuals who deserve respect, accommodation and opportunities to thrive. </p>
<h2>How did we get here?</h2>
<p>A look at the past can help us to understand the attitudes toward the disabled we witness today. The history of disability has not been a path of steady progress toward tolerance and accommodation. </p>
<p><a href="http://socialwelfare.library.vcu.edu/biography/trent-james-w/">James Trent</a>, a professor of sociology and social work at Gordon College, in his 1994 book, <a href="https://books.google.com/books?id=syWMbPn-ymkC">“Inventing the Feeble Mind,”</a> describes shifting attitudes toward and treatment of people with disabilities in America since the Colonial era. </p>
<p>According to Trent, in the Colonial and early republican eras, “idiots” – as people with intellectual disabilities were known at the time – were recognized members of their local communities. </p>
<p>But beginning in the 19th century, the rise of modernity put greater emphasis on normality. A good citizen was one who had the ability to be productive and self-reliant. A new class of professionals emerged whose careers were devoted to managing human health and behavior. </p>
<p>By the mid-19th century, these changes had contributed to the identification of “feeblemindedness” as a social problem that needed to be identified and treated. Feeblemindedness was a broad category that included people with intellectual disabilities, but also others who were deemed unproductive or immoral, such as immigrants, people of color and the poor. </p>
<p>It became increasingly common to remove the feebleminded and other people with disabilities from their families and communities and place them in institutions.</p>
<h2>Start of institutionalization</h2>
<p>Early institutions in the United States were inspired by <a href="https://books.google.com/books?id=8iZXLDJMS6oC&pg=PA170&lpg=PA170&dq=French+educator+Edward+Seguin&source=bl&ots=z9EAMPDp2u&sig=A07xSD4gUVP2ivlnS0-xIwdOT0M&hl=en&sa=X&ved=0ahUKEwiugvmH4tzOAhWBoRQKHSjXD04Q6AEIXTAI#v=onepage&q=French%20educator%20Edward%20Seguin&f=false">French educator Edward Seguin</a>, known as the “apostle for the idiots.” He believed that people with intellectual disabilities were capable of learning and development. </p>
<p>Inspired by Seguin’s success, the first American institutions, led by men such as <a href="http://www.disabilityhistorywiki.org/wiki/index.php?title=Hervey_Wilbur">Hervey B. Wilbur</a>, <a href="https://en.wikipedia.org/wiki/Samuel_Gridley_Howe">Samuel Gridley Howe</a> and <a href="http://www.ncbi.nlm.nih.gov/pubmed/15011813">Henry M. Knight</a>, were dedicated to education and uplift. They were intended as a temporary measure to build residents’ skills and moral character, releasing them as productive members of society. </p>
<h2>Institutions as places of abuse</h2>
<p>Within a few decades, the mission of institutions began to shift <a href="https://books.google.com/books?id=syWMbPn-ymkC&printsec=frontcover&dq=trent++feeble+minded&hl=en&sa=X&ved=0ahUKEwio56ag1uDOAhVK-mMKHY4ED0wQ6AEIHjAA#v=onepage&q=trent%20%20feeble%20minded&f=false">from reform to permanent custody of the feebleminded</a>. It was <a href="https://books.google.com/books?id=syWMbPn-ymkC&printsec=frontcover&dq=trent++feeble+minded&hl=en&sa=X&ved=0ahUKEwio56ag1uDOAhVK-mMKHY4ED0wQ6AEIHjAA#v=onepage&q=employment&f=false">hard to find employment</a> for newly reformed inmates, particularly during periods of economic scarcity. </p>
<p>In the early 20th century, the <a href="http://www.nature.com/scitable/forums/genetics-generation/america-s-hidden-history-the-eugenics-movement-123919444">eugenics movement</a> contributed to prejudice against the feebleminded by proposing that they posed a threat to the purity and strength of the nation’s bloodlines. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/135825/original/image-20160829-17851-1y7r0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/135825/original/image-20160829-17851-1y7r0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/135825/original/image-20160829-17851-1y7r0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/135825/original/image-20160829-17851-1y7r0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/135825/original/image-20160829-17851-1y7r0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/135825/original/image-20160829-17851-1y7r0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/135825/original/image-20160829-17851-1y7r0.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">
<figcaption>
<span class="caption">Forest Haven, a children’s developmental center and mental institution in Laurel, Maryland, which was shut down in 1991.</span>
<span class="attribution"><span class="source">Jack Says Relax</span>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span>
</figcaption>
</figure>
<p>Institutions addressed these concerns by hiding the “undesirables” from view. They also controlled their ability to reproduce through segregation and, in some cases, compulsory sterilization. </p>
<p>Where once institutions had prioritized education and care, their mission shifted to social management. They became overcrowded, and residents were subjected to abuse and neglect.</p>
<p>Sometimes the “feebleminded” were used in medical experiments. Without their consent, they were exposed to pathogens for diseases such as <a href="http://www.washingtonpost.com/wp-dyn/content/article/2011/02/27/AR2011022700988.html">hepatitis</a>, <a href="http://www.washingtonpost.com/wp-dyn/content/article/2011/02/27/AR2011022700988.html">gonnorhea</a> and <a href="http://www.washingtonpost.com/wp-dyn/content/article/2011/02/27/AR2011022700988.html">flu</a>.</p>
<h2>Change is hard in many countries</h2>
<p>By the mid-20th century, the rise of a <a href="http://mn.gov/mnddc/ada-legacy/ada-legacy-moment1.html">parents’ movement</a> and a series of damning journalistic exposes of facilities like <a href="http://www.library.csi.cuny.edu/archives/WillowbrookRG.htm">Willowbrook State School</a> and <a href="https://abandonednyc.com/2012/08/05/legend-tripping-in-letchworth-village/">Letchworth Village</a> began to roll back the practice of institutionalization. </p>
<p>Once again, people with disabilities would be included in family, education and workplaces. </p>
<p>Thanks to such efforts, in the United States today people with disabilities often live within their own communities, although many of the problems introduced by institutional culture persist – albeit in different forms. </p>
<p>For example, people with disabilities can still be <a href="http://www.governing.com/topics/mgmt/gov-american-disabilities-act-compliance.html">segregated into sheltered workshops</a> where they are paid below minimum wage for dull and repetitive labor; <a href="http://phys.org/news/2015-02-segregation-special-students-professors.html">isolated in special education classrooms</a> and can still face diminished opportunities to <a href="http://money.cnn.com/2015/07/26/news/economy/americans-with-disabilities-act-problems-remain/">work</a> and <a href="http://www.disabled-world.com/disability/blogs/social-isolation.php">socialize</a>. </p>
<p>But in many other parts of the world, the practice of institutionalization – and its attendant problems – remains. Media reports have highlighted the appalling conditions and abuse in facilities in <a href="http://www.nytimes.com/2010/12/01/world/americas/01mexico.html?_r=0">Mexico</a>, <a href="https://www.hrw.org/news/2014/09/15/russia-children-disabilities-face-violence-neglect">Russia</a> and <a href="http://www.news.com.au/world/europe/romanias-disabled-people-abused-regularly-in-state-institutions/news-story/c8066f29e1cc6cbc6d78b3df52bad2a6">Romania</a>. </p>
<h2>Impact of institutionalization</h2>
<p>The point of noting horrors in other parts of the world is not to exonerate the United States, where people with disabilities still encounter <a href="http://www.huffingtonpost.com/tiffiny-carlson/discrimination-people-disabilities-_b_4509393.html">prejudice</a>, <a href="http://www.bbc.com/news/education-11139534">exclusion</a> and <a href="http://www.usnews.com/news/blogs/data-mine/2015/05/22/americans-with-disabilities-more-often-victims-of-violent-crimes">violence</a>, but to emphasize the lingering culture of institutionalization.</p>
<p>The fear, shame and misunderstanding around disability that we see today are sentiments that persist long after the facilities themselves have closed. </p>
<p>For example, families of those who died at Tsukui Yamayurien chose <a href="http://www.japantimes.co.jp/news/2016/08/06/national/media-national/victims-sagamihara-massacre-disabled-facility-forever-nameless/">not to identify their names</a>. I believe it is the logic of institutionalization that motivated their decisions. So great is their shame that the victims’ families would prefer the dead to remain anonymous and unmemorialized than admit to having a disabled relative. </p>
<p>In the United States, this same reasoning lies behind hundreds of <a href="https://www.people-inc.org/news/2014/monument_for_the_forgott-2014-07-08-1177/index.html">thousands of graves marked only with numbers</a> at the cemeteries of former state asylums and hospitals. In recent years, <a href="http://www.cnsnews.com/news/article/volunteers-recognize-mentally-ill-buried-unmarked-graves">advocates have sought to identify the dead</a>, both to redress past crimes and to insist on the value of disabled lives in the present.</p>
<h2>Let’s recognize them as people</h2>
<p>On the face of it, the massacre at Tsukui Yamayurien was committed by a single, deranged individual. But his actions belong to the long history of institutionalization. </p>
<p>The practice of warehousing people with disabilities sends a message that they are less than human. Even long after institutions are closed, we continue to treat their former residents as a problem to be managed.</p>
<p>We forget they are individuals whose lives have meaning and value. Their senseless deaths are just as tragically newsworthy and deserving of memorialization as those of all other victims of mass violence.</p><img src="https://counter.theconversation.com/content/64201/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rachel Adams does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Today’s violence and prejudice against people with disabilities goes back to the practice of institutionalization, which started in Europe and the United States a century ago.Rachel Adams, Professor of English and Comparative Literature, Columbia UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/513072015-11-27T04:18:26Z2015-11-27T04:18:26ZIt’s time to fix the power dynamics that allowed the abuse of people with disability<figure><img src="https://images.theconversation.com/files/103387/original/image-20151126-28287-1gypnrd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Violence towards people with disabilities has come about because they have been devalued and dehumanised, and no-one has taken responsibility. </span> <span class="attribution"><span class="source">from www.shutterstock.com.au</span></span></figcaption></figure><p>A <a href="http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Violence_abuse_neglect/Report">Senate report</a> released this week details the stark reality of violence and abuse of people with disabilities across Australia. </p>
<p>The report shows the root cause of violence, neglect and abuse of people with disability begins with the devaluing of their lives. It points to the effects of this devaluing in all spheres including legal, justice, regulatory, policy and services.</p>
<p>Almost exactly a year ago, Jules Anderson talked publicly on <a href="http://www.abc.net.au/4corners/stories/2014/11/24/4132812.htm">Four Corners</a> about the horrific abuse she had suffered at the Yooralla disability service. Others also spoke out, and the program asked: is it only Yooralla?</p>
<p>The inquiry report says clearly that it isn’t. The evidence compiled shows that abuse of people with disability is widespread, entrenched and rarely has consequences for the perpetrators.</p>
<p>Until we end the assumptions that people with disability are deficient and dependent, the power differentials that underpin disability violence and abuse will remain.</p>
<h2>The recommendations</h2>
<p>Senator Claire Moore, a member of the inquiry committee, highlighted the extent of the problem in <a href="http://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;db=CHAMBER;id=chamber/hansards/2ea0ef30-380c-493d-adf4-0223f89e0720/0176;query=Id:">parliament</a>. The inquiry, she said, heard: </p>
<blockquote>
<p>… about the horror – and there is no other word to describe it – of the abuse not just individually but systemically and across the country, abuse on those who are most vulnerable, abuse on those whose voices have not been able to be heard before.</p>
</blockquote>
<p>Key among the Senate inquiry recommendations are calls for a royal commission, an increase in advocacy services, changes to disability workforce regulation and training, and better data collection.</p>
<p>The report recommends a national register for disability workers, regular criminal checks, a list of excluded workers and a mandatory reporting regime. This follows revelations about workers being able to move from state to state without previous reports of abuse being available. </p>
<p>Also recommended is a review of worker qualifications and a move to more rights-based training. </p>
<p>To ensure a strong system of oversight, the report calls for a national watchdog and a mechanism for safe reporting when violence happens. </p>
<p>The committee highlighted the need for nationally comprehensive and consistent data collection and asked the Australian Bureau of Statistics to include all people with disabilities, such as those in non-private dwellings, in all of its surveys.</p>
<h2>How did we get here?</h2>
<p>Underpinned by the pervasive de-valuing of people with disability, violence and abuse have been able to thrive. </p>
<p>Evidence presented to the inquiry captures examples of the systematic sexual abuse of residents by staff in disability accommodation settings. </p>
<p>In such settings, violence and abuse often appear in the form of rough handling by under-trained and overwhelmed staff. It’s also perpetrated in the unauthorised use of medication to manage “challenging behaviour” – behaviour that often arises as a result of “challenging environments”. </p>
<p>Violence perpetrated by co-residents who may be incompatible can be a significant issue in these settings. This is precipitated by the dire shortage of accommodation options for people with intellectual disability. </p>
<p>However, the system is poorly equipped to identify and respond to these issues and practices. </p>
<p>There is no uniform definition or even consensus as to what constitutes violence and abuse in Australia. While definitions tend to focus on “domestic” or “family” violence, these largely exclude forms of violence that are commonly experienced by people with disabilities such as denial of mobility and communication devices, withholding of food or medication or threats of institutionalisation.</p>
<p>The <a href="https://theconversation.com/we-count-what-matters-and-violence-against-people-with-disability-matters-51320">lack of nationally consistent data</a> collection has hampered efforts to establish the scale of the problem in Australia. In general, data collected around disability excludes experiences of violence and data collected around violence excludes people with a disability living in residential settings. </p>
<p>This means we are currently unable to capture the extent, nature, causes and impact of violence and abuse. </p>
<p>In the policy sphere, there is no coherent framework to address disability violence and to implement safeguards. These gaps are even more stark for women and Indigenous Australians. </p>
<p>Women with disabilities, for instance, often face <a href="https://theconversation.com/abuse-and-neglect-of-people-with-disabilities-demands-zero-tolerance-response-43999">situations of violence and abuse</a> by their intimate partners, who also provide their care. These unique relationships of dependency often mean these women have very limited options for pathways to safety. </p>
<p>Indigenous women with disabilities make up a significant proportion of our female prison population. Almost universally, these women <a href="https://www.mhdcd.unsw.edu.au/sites/www.mhdcd.unsw.edu.au/files/u18/pdf/a_predictable_and_preventable_path_2nov15.pdf">have experienced</a> long-term sexual abuse and violence. Yet their needs for support and safety are obscured by their status as offenders. </p>
<h2>Justice for people with disability</h2>
<p>The poor practice in disability services, inadequate responses and low levels of safeguarding have enabled the widespread and endemic violence and abuse recognised in the inquiry report.</p>
<p>With the National Disability Insurance Scheme rolling out around Australia, and the National Disability Strategy being updated, these issues need to be addressed. The recommendations provide a blueprint for building a system that gives people with disabilities the same access to justice as other Australians.</p>
<hr>
<p><em>Carolyn Frohmader, Executive Director, Women with Disabilities Australia, and El Gibbs, Board Member, Women with Disabilities Australia, co-authored this article.</em></p>
<p><em><strong>Further reading:</strong> <a href="https://theconversation.com/we-count-what-matters-and-violence-against-people-with-disability-matters-51320">We count what matters, and violence against people with disability matters</a></em></p><img src="https://counter.theconversation.com/content/51307/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Leanne Dowse receives funding from the NSW Government, Department Family and Community Services and from the Australian Research Council. </span></em></p>The Senate inquiry into violence against people with disability shows the root cause of violence, neglect and abuse of people with disability begins with the de-valuing of their lives.Leanne Dowse, Associate professor, Chair in Intellectual Disability Behaviour Support, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/513202015-11-27T03:02:10Z2015-11-27T03:02:10ZWe count what matters, and violence against people with disability matters<p>The <a href="http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Violence_abuse_neglect">Senate inquiry</a> into violence, abuse and neglect against people with disability heard many horrific stories of violence experienced by adults and children with disability. They experience violence at the hands of intimate partners, parents, informal carers, service providers, teachers, medical professionals, co-residents in institutional settings, and others.</p>
<p>Greens senator Rachel Siewert, handing down the report, <a href="http://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;db=CHAMBER;id=chamber%2Fhansards%2F2ea0ef30-380c-493d-adf4-0223f89e0720%2F0174;query=Id%3A%22chamber%2Fhansards%2F2ea0ef30-380c-493d-adf4-0223f89e0720%2F0000%22">observed</a>:</p>
<blockquote>
<p>One of the issues that is really clear is that we do not have good data around prevalence. We do not collect this data … Yet that is the only way that we can understand what is going on.</p>
</blockquote>
<p>This echoes the concerns of Australian disability researchers in <a href="http://www.aph.gov.au/DocumentStore.ashx?id=0d72bc68-4a85-4a51-895c-ce7eea6112a0&subId=353088">submissions to the inquiry</a>.</p>
<p>Data is essential for political accountability. Violence against people with disability – <a href="http://www.aihw.gov.au/disability/">18% of the Australian population</a> – is endemic, yet data about it is largely missing.</p>
<p>This lack of data impedes the development of effective policies and programs to prevent and respond to violence against people with disability. It also hampers advocacy efforts. </p>
<p>The lack of data lets governments, services and the community – all of us – off the hook.</p>
<h2>What do we count now?</h2>
<p>It is well recognised internationally that high-quality population-based prevalence data is needed to respond adequately to violence. In Australia, the ABS Personal Safety Survey (<a href="http://www.abs.gov.au/ausstats/abs@.nsf/mf/4906.0">PSS</a>) is regarded as the source of the best data on violence.</p>
<p>In 2012, for the first time, the survey included questions about disability. This enabled comparisons to be made between people with and without disability. </p>
<p>The chilling results of a comprehensive analysis of these comparisons were reported at the <a href="http://croakey.org/investigating-the-unmet-needs-of-children-and-refugees-with-disabilities/">Population Health Congress</a> in September. These results will soon be published in the Australian and New Zealand Journal of Public Health. </p>
<p>Findings included that since 15 years of age:</p>
<ul>
<li><p>28% of women with disability reported sexual violence (compared with 15% of other women);</p></li>
<li><p>25% of women with disability reported partner violence (compared with 13% of other women);</p></li>
<li><p>35% of women with disability reported emotional abuse (compared with 19% of other women); and</p></li>
<li><p>men with disability also reported higher levels of sexual violence and partner violence than men without disability, but lower levels than women with disability.</p></li>
</ul>
<p>The prevalence of all forms of violence was higher among people with disability.</p>
<h2>What counts as violence?</h2>
<p>But these statistics don’t tell the whole story. This is because of how the PSS collects data. The family and other formal and informal carers who people with disability rely on for support may be perpetrators, but the PSS doesn’t collect information about that. </p>
<p>People with disability also experience what legal researcher <a href="http://www.aph.gov.au/DocumentStore.ashx?id=91128471-6949-4097-9bb4-376854aec7c9&subId=355113">Linda Steele</a> calls “lawful violence”. This is violence that against any other person would constitute a serious crime or even torture, but against people with disability is “treatment”. </p>
<p>People with disability may be uniquely vulnerable to forms of violence like solitary confinement, forced medication, physical restraint, withholding food, medication or equipment, rough handling and so forth. Yet this is not counted in the PSS.</p>
<p>The survey includes only people living in private dwellings. This leaves out some of the settings in which people with disability are over-represented. That includes group homes, large residential facilities, psychiatric facilities, aged care facilities, prisons and so on. These settings lend themselves to <a href="http://www.pwd.org.au/issues/crpd-civil-society-shadow-report-group.html">higher levels of violence and abuse</a>.</p>
<p>The PSS also will only run interviews with individuals. This means anyone who requires any support with communication (like <a href="http://www.deafau.org.au/info/policy_auslan.php">Deaf people</a> or people with communication needs) is automatically excluded. It also samples only adults despite <a href="http://www.researchgate.net/profile/Christopher_Mikton/publication/229090389_Prevalence_and_risk_of_violence_against_children_with_disabilities_a_systematic_review_and_meta-analysis_of_observational_studies/links/0c960522c6f04195f0000000.pdf">international data</a> showing the prevalence of violence against children with disabilities is much higher.</p>
<p>So, while the PSS shows that people with disability are at higher risk of violence than people without disability, the picture is far from complete. </p>
<p>Other mainstream data collections are also inadequate. <a href="http://www.aihw.gov.au/publication-detail/?id=60129548812">Child protection data</a> does not report information on disability of either the child or parent/s, despite numerous commitments to do so under the <a href="https://www.dss.gov.au/our-responsibilities/families-and-children/publications-articles/protecting-children-is-everyones-business">National Framework for Protecting Australia’s Children</a>. Information about disability is not in the crimes data reported by the <a href="http://www.aic.gov.au/statistics.html">Australian Institute of Criminology</a>.</p>
<p>Additionally, our major data collections on disability – the <a href="http://www.abs.gov.au/ausstats/abs@.nsf/mf/4430.0">Survey of Disability, Ageing and Carers</a> and the <a href="http://www.aihw.gov.au/disability/disability-services-nmds-collection/">Disability Services National Minimum Data Set</a> – do not collect information on violence. </p>
<p>That is a missed opportunity the inquiry highlighted. Only at the request of the Senate committee has data from the <a href="http://www.aph.gov.au/DocumentStore.ashx?id=c4d3be4a-96f1-47f4-a85f-fd35d33cd04e&subId=355132">National Disability Abuse and Neglect Hotline</a> been released. It reflects a problematically low reporting rate when compared, for example, with the new <a href="http://www.aph.gov.au/DocumentStore.ashx?id=857af43a-0a57-45b5-b97d-2da5d0815f0d&subId=350759">NSW Ombudsman’s Reportable Conduct Scheme</a>.</p>
<h2>How to make violence against people with disability count</h2>
<p>We count what matters, and what matters counts. This is at the heart of accountability. We need information on the types of violence, where it occurs, how often, and who are the perpetrators. </p>
<p>People with disability need to be at the forefront of defining violence to ensure we capture the full complexities of their experiences.</p>
<p>The inquiry <a href="http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Violence_abuse_neglect/Report/b01">recommended</a> questions about disability and violence be included in population surveys conducted by the ABS and recorded in datasets – such as child protection data – held by the Australian Institute of Health and Welfare. </p>
<p>These improvements would help us properly understand the extent of the violence. We could then respond better to the pervasive and hidden human rights violations against some of the most marginalised people in our community. </p>
<p>As Labor senator Claire Moore said in her evidence to the inquiry:</p>
<blockquote>
<p>… data is not just evidence that is put out – not just figures and numbers. Data reflects the lived experience of people … Data is the extraction of information that we can do better.</p>
</blockquote>
<hr>
<p><em>This article was co-authored by Dr Jess Cadwallader, Advocacy Project Manager,
Violence Prevention, at People with Disability Australia. It draws in part on <a href="https://wildlyparenthetical.wordpress.com/2015/11/26/counting-and-accountability/">her presentation</a> to a <a href="http://sydneydemocracynetwork.org/wp-content/uploads/2015/10/Power-and-Accountability.pdf">symposium on Power and Accountability</a> at the University of Sydney in November 2015.</em></p>
<p><em><strong>Further reading: <a href="https://theconversation.com/its-time-to-fix-the-power-dynamics-that-allowed-the-abuse-of-people-with-disability-51307">It’s time to fix the power dynamics that allowed the abuse of people with disability</a></strong></em></p><img src="https://counter.theconversation.com/content/51320/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Anne Kavanagh receives funding from the Australian Research Council and the National Health and Medical Research Council. She is a member of the Victorian Disability Advisory Council. </span></em></p><p class="fine-print"><em><span>Sally Robinson receives funding from the Australian Research Council, the National Disability Research Working Group and the Royal Commission into Institutional Responses on Child Sexual Abuse. She is a member of the NDIS Intellectual Disability Working Group. </span></em></p>Accountability for the violence and abuse that people with disability experience begins with recording the offences. In fact, we have long ignored crimes against vulnerable members of our community.Anne Kavanagh, Head, Gender and Women’s Health Unit, Centre for Health Equity, The University of MelbourneSally Robinson, Research Fellow, Centre for Children and Young People, Southern Cross UniversityLicensed as Creative Commons – attribution, no derivatives.