{"id":4222,"date":"2019-04-26T00:02:36","date_gmt":"2019-04-26T00:02:36","guid":{"rendered":"https:\/\/tvndy.ca\/?p=4222"},"modified":"2019-12-09T19:43:23","modified_gmt":"2019-12-09T19:43:23","slug":"webcast-archive-united-nations-special-rapporteur-on-the-rights-of-people-with-disabilities","status":"publish","type":"post","link":"https:\/\/tvndy.ca\/en\/2019\/04\/webcast-archive-united-nations-special-rapporteur-on-the-rights-of-people-with-disabilities\/","title":{"rendered":"Webcast archive: United Nations Special Rapporteur on the rights of people with disabilities"},"content":{"rendered":"<p><iframe loading=\"lazy\" width=\"1180\" height=\"664\" src=\"https:\/\/www.youtube.com\/embed\/QuPTqBj0F1w?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<p>In this episode of\u00a0<em>Euthanasia &amp; Disability<\/em>, Amy Hasbrouck and Christian Debray discuss:<\/p>\n<ul>\n<li>United Nations Special Rapporteur on the rights of people with disabilities &#8211; observations on her visit to Canada<\/li>\n<li>Remembering Denise Karuth<\/li>\n<li>Corrected link<\/li>\n<\/ul>\n<p>Please note that this text is only a script and that our webcast contains additional commentary.<\/p>\n<p><strong>UNITED NATIONS SPECIAL RAPPORTEUR ON THE RIGHTS OF PEOPLE WITH DISABILITIES, OBSERVATIONS ON HER VISIT TO CANADA<\/strong><\/p>\n<ul>\n<li>The United Nations Special Rapporteur on the Rights of People with Disabilities, Ms. Catalina Devandas Aguilar, visited Canada between April 2 and 11 to gather first-hand information about the status of people with disabilities in Canada, to determine whether disability rights are being respected, and to make suggestions to improve compliance with the Convention on the Rights of Persons with Disabilities.<\/li>\n<li>On April 12, the office of the Special Rapporteur issued some\u00a0<a href=\"https:\/\/www.ohchr.org\/EN\/NewsEvents\/Pages\/DisplayNews.aspx?NewsID=24481&amp;LangID=E\">preliminary observations<\/a>; a final report will be presented at the 43<sup>rd<\/sup>\u00a0session of the United Nations Human Rights Council in March of next year.<\/li>\n<li>Ms. Devandas mentioned that Canada has ratified the Convention on the Rights of Persons with Disabilities and its optional Protocol, the\u00a0<a href=\"https:\/\/wipolex.wipo.int\/en\/treaties\/textdetails\/13169\">Marrakesh Treaty<\/a>\u00a0(to provide access to print texts for people with vision and reading disabilities) and most of the other\u00a0<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/CoreInstruments.aspx\">core human rights documents<\/a>.\n<ul>\n<li>The International Convention on the Elimination of All Forms of Racial Discrimination (<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/CERD.aspx\">ICERD<\/a>)<\/li>\n<li>The International Covenant on Civil and Political Rights (<a href=\"https:\/\/www.ohchr.org\/en\/professionalinterest\/pages\/ccpr.aspx\">ICCPR<\/a>)\n<ul>\n<li><a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/OPCCPR1.aspx\">Optional Protocol<\/a>\u00a0to the ICCPR<\/li>\n<li><a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/2ndOPCCPR.aspx\">Second Optional Protocol<\/a>: Abolition of the Death Penalty<\/li>\n<\/ul>\n<\/li>\n<li>The International Covenant on Economic, Social and Cultural Rights (<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/CESCR.aspx\">ICESCR<\/a>)\n<ul>\n<li><a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/OPCESCR.aspx\">Optional Protocol<\/a>\u00a0to the ICESCR<\/li>\n<\/ul>\n<\/li>\n<li>The Convention on the Elimination of All Forms of Discrimination Against Women (<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/CEDAW.aspx\">CEDAW<\/a>)\n<ul>\n<li><a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/OPCEDAW.aspx\">Optional Protocol<\/a>\u00a0to the CEDAW.<\/li>\n<\/ul>\n<\/li>\n<li>The Convention Against Torture and Other Cruel, Inhumane or Degrading Treatment or Punishment (<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/CAT.aspx\">CAT<\/a>)\n<ul>\n<li><a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/OPCAT.aspx\">Optional Protocol<\/a>\u00a0to the CAT.<\/li>\n<\/ul>\n<\/li>\n<li>The Convention on the Rights of the Child (<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/CRC.aspx\">CRC<\/a>)\n<ul>\n<li>Optional Protocol:\u00a0<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/OPACCRC.aspx\">Armed Conflict<\/a>;<\/li>\n<li>Optional Protocol:\u00a0<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/OPSCCRC.aspx\">The Sale of Children for Prostitution and Pornography<\/a>;<\/li>\n<li>Optional Protocol:\u00a0<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/OPICCRC.aspx\">Communications Procedure<\/a>;<\/li>\n<\/ul>\n<\/li>\n<li>The Convention on the Rights of Persons with Disabilities (<a href=\"https:\/\/www.ohchr.org\/EN\/HRBodies\/CRPD\/Pages\/ConventionRightsPersonsWithDisabilities.aspx\">CRPD<\/a>)\n<ul>\n<li><a href=\"https:\/\/www.ohchr.org\/EN\/HRBodies\/CRPD\/Pages\/OptionalProtocolRightsPersonsWithDisabilities.aspx\">Optional Protocol<\/a>, which allows people or organizations to bring complaints for violation of the Convention to the Committee on the Rights of Persons with Disabilities.<\/li>\n<\/ul>\n<\/li>\n<li>Other\u00a0<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/UniversalHumanRightsInstruments.aspx\">Human Rights<\/a>\u00a0treaties and documents<\/li>\n<\/ul>\n<\/li>\n<li>Ms. Devandas noted, however, that Canada has not ratified some important human rights treaties, including:\n<ul>\n<li>The International Convention on the Protection of the Rights of All Migrant Workers and Members of their Families (<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/CMW.aspx\">ICMW<\/a>)<\/li>\n<li>The international Convention for the Protection of All Persons from Enforced Disappearance (<a href=\"https:\/\/www.ohchr.org\/EN\/HRBodies\/CED\/Pages\/ConventionCED.aspx\">CPED<\/a>)<\/li>\n<li>The\u00a0<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/OPCAT.aspx\">Optional Protocol<\/a>\u00a0to the CAT<\/li>\n<li>The\u00a0<a href=\"https:\/\/www.ohchr.org\/EN\/ProfessionalInterest\/Pages\/OPCESCR.aspx\">Optional Protocol<\/a>\u00a0to the ICESCR<\/li>\n<\/ul>\n<\/li>\n<li>She further encouraged Canada to withdraw its \u201c<a href=\"https:\/\/cacl.ca\/wp-content\/uploads\/2018\/01\/CACL-Position-legal-capacity_0.pdf\">interpretive declaration<\/a>\u201d related to article 12 of the CRPD, which states that Canada \u201creserves the right to continue to use substitute decision-making in appropriate circumstances.\u201d<\/li>\n<li><a href=\"https:\/\/www.ohchr.org\/EN\/NewsEvents\/Pages\/DisplayNews.aspx?NewsID=24481&amp;LangID=E\">The statement<\/a>\u00a0is somewhat long, and covers a lot of ground, but it\u2019s worthwhile to read the whole thing.\u00a0 We don\u2019t really have the space to review it thoroughly here, but we will highlight a few important ideas.<\/li>\n<li>The Special Rapporteur points out the limited federal control over matters covered by the CRPD, and that only Ontario, Manitoba, Nova Scotia and Qu\u00e9bec have adopted disability rights legislation. Ms. Devandas adds that none of these provincial laws ensures the rights protected by the CRPD.<\/li>\n<li>Ms. Devandas criticized the lack of a national policy in Canada to coordinate, guide and monitor the implementation of the CRPD. She issued a reminder that governments at all levels are responsible for putting the convention into action, as provided in Article 4(5).<\/li>\n<li>Ms. Devandas notes that while Canada collects fairly detailed census information about people with disabilities living in community settings, demographic data about the half-million people in institutions is inadequate, and information about indigenous disabled people is almost non-existent.\u00a0 The Special Rapporteur also believes that the information drawn from the Disability Screening Questions isn\u2019t being used to guide the design, implementation and monitoring of disability policies and programs.<\/li>\n<li>She remarked that in Canada \u201cdiscussions about the rights of persons with disabilities are still framed in terms of social assistance, rather than from a human rights-based approach.\u201d\u00a0The Special Rapporteur adds that the non-discrimination guarantees in the Charter of Rights, and the duty to accommodate recognized in provincial laws \u201care insufficient to ensure a systemic transformation of society\u201d<\/li>\n<li>The Special Rapporteur emphasized that all levels of government must remove from individuals \u201cthe burden of initiating lengthy and onerous legal procedures to achieve the recognition and enjoyment of their rights.\u201d<\/li>\n<li>Ms. Devandas identified \u201csignificant disparities in the areas of accessibility and access to education, health, administration of justice, and social protection\u201d depending on place of residence, and noted that the situation for indigenous people was \u201cparticularly worrisome.\u201d<\/li>\n<li>The section on independent living bears special mention.\n<ul>\n<li>The Special Rapporteur is \u201cextremely concerned,\u201d<\/li>\n<li>Access to independent living supports \u201cis not considered as a right, but rather as a social assistance programme dependent on the availability of services.\u201d<\/li>\n<li>Piecemeal programs and under-funding cause long wait times for services that provide insufficient coverage.<\/li>\n<li>People with intellectual and psychosocial disabilities are over-represented among the homeless population.<\/li>\n<\/ul>\n<\/li>\n<li>In the section entitled \u201cRight to life\u201d the exact language, and several points, are worth noting.<\/li>\n<li>\u201cI am extremely concerned about the implementation of the legislation on medical assistance in dying from a disability perspective. I have been informed that there is no protocol in place to demonstrate that persons with disabilities have been provided with viable alternatives when eligible for assistive dying. I have further received worrisome claims about persons with disabilities in institutions being pressured to seek medical assistance in dying, and practitioners not formally reporting cases involving persons with disabilities. I urge the federal government to investigate these complaints and put into place adequate safeguards to ensure that persons with disabilities do not request assistive dying simply because of the absence of community-based alternatives and palliative care.\u201d\u00a0 Some points to note about this section:\n<ul>\n<li>The section is called the \u201cright to life\u201d not the \u201cright to die.\u201d<\/li>\n<li>The Special Rapporteur is \u201cextremely concerned.\u201d\u00a0 She expresses this level of concern only regarding the Right to life and independent living.\u00a0 It is the highest level on the \u201cscale of concern,\u201d however this section was not highlighted in the\u00a0<a href=\"https:\/\/www.ohchr.org\/EN\/NewsEvents\/Pages\/DisplayNews.aspx?NewsID=24483&amp;LangID=E\">press release<\/a>\u00a0issued by her office.<\/li>\n<li>Ms. Devandas notes that people should be \u201cprovided with viable alternatives,\u201d not just informed of the availability of palliative care.<\/li>\n<li>She mentions \u201cworrisome claims\u201d of:\n<ul>\n<li>Institutionalized people being pressured to seek MAiD; and<\/li>\n<li>lack of reporting by physicians.<\/li>\n<\/ul>\n<\/li>\n<li>Ms. Devandas urges the federal government to:\n<ul>\n<li>Investigate these complaints; and<\/li>\n<li>Put into place adequate safeguards to ensure that people don\u2019t ask for AS\/E just because they don\u2019t have community-based alternatives and palliative care.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<li>You can email the Special Rapporteur on the Rights of Persons with Disabilities at\u00a0<a href=\"mailto:sr.disability@ohchr.org\">sr.disability@ohchr.org<\/a>.<\/li>\n<\/ul>\n<p><strong>REMEMBERING DENISE KARUTH<\/strong><\/p>\n<ul>\n<li>On Easter Sunday morning, April 21, 2019, nearly four years after a diagnosis of brain cancer, Denise Karuth died peacefully in her own bed, comfortable and pain-free, surrounded by friends and family.<\/li>\n<li>Like many of us, Denise Karuth was a disability rights activist by default. Her life-long visual impairment shaped her awareness of barriers in her environment, and her compassionate character made her aware of how discrimination affected other disabled people.\u00a0 Denise learned more directly about architectural barriers when she developed Multiple Sclerosis in the early 1980s. She unfortunately also learned more about negative attitudes about disability from medical practitioners, social service professionals, and even loved ones, for whom the MS seemed to add an insupportable insult to injury.<\/li>\n<li>Denise became involved in the independent living and disability rights movements, helping others with disabilities move from institutions to living in their own homes with personal care attendants, and advocating for accessible public transit.\u00a0 Denise served as the chair of the Governor\u2019s Commission on Accessible Public Transportation under Michael Dukakis.\u00a0 To increase her own mobility, she had to advocate with guide dog providers to consider the needs of mobility-impaired users, both in how the dogs were trained (for example, to identify curb cuts and locate ramps to building entrances), and the accessibility of their facilities and programs to people using wheelchairs.<\/li>\n<li>Denise was a co-founder and long-time director of the Boston Self-Help Center, which provided a counter-balance to the male-dominated, physical-disability orientation of the Boston Center for Independent Living by providing independent living skills and peer support to people with cognitive, psychiatric, and sensory disabilities, as well as chronic illness and HIV\/AIDS.<\/li>\n<li>Denise\u2019s personality was both gentle and formidable.\u00a0 She was incredibly generous, and was the person who always made sure that everyone\u2019s accessibility needs were taken into account.\u00a0 Her faith was a central and essential part of who she was, but even there, she challenged traditional Christian conceptions of disability. Her ordination as a Minister of the United Church of Christ in 2016 (upon earning a Master\u2019s in divinity from the Episcopal Divinity School in Cambridge, MA) was the culmination of her faith and dedication to the communities of the First Church in Cambridge, as well as the First Church in Northampton.<\/li>\n<li>Denise became involved with disability activists opposing the legalization of assisted suicide starting in the mid 1990s, and her passing became a testimony of sorts; she outlived her 16-month prognosis by 32 months, and she showed that it\u2019s not necessary to control the moment of death in order to die with dignity.<\/li>\n<li>All these details, of her jobs as administrator or grant-writer, as peer-counselor, activist and ambassador, mentor and minister, barely scratch the surface of who Denise was; a unique gift to each person who knew her.\u00a0 She was a talented musician and scholar.\u00a0 She was the embodiment of lovingkindness, a dog fan, and a Trekkie.\u00a0 Denise was tender and tenacious.\u00a0 She was wonderfully imperfect, sometimes too soft, almost na\u00efve in her optimism, ready to give away the store. She was luminous and warm and frustrating at times. But most of all, Denise Ann Karuth was beautiful and beloved.<\/li>\n<li>For more information about Denise\u2019s life and work, visit\u00a0<a href=\"http:\/\/scua.library.umass.edu\/umarmot\/karuth-denise\/\">http:\/\/scua.library.umass.edu\/umarmot\/karuth-denise\/<\/a><\/li>\n<\/ul>\n<p><strong>CORRECTED LINK<\/strong><\/p>\n<ul>\n<li>The link we included in the webcast text of April 12 to the Summary report on end-of-life care in Qu\u00e9bec didn\u2019t work;\u00a0<a href=\"https:\/\/drive.google.com\/file\/d\/1DI_Ceh51AifnWtvmyUaR9rw_HEMcRssI\/view\">this one<\/a>\u00a0should do the trick.\u00a0 We\u2019re wicked sorry for the error.<\/li>\n<\/ul>\n   ","protected":false},"excerpt":{"rendered":"<div class=\"entry-summary\">\n<div class=\"entry-summary\">\nThis week, we summarize important points from the UN Special Rapporteur on Disability&#8217;s statement on her visit to Canada, and pay tribute to advocate Denise Karuth.\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/tvndy.ca\/en\/2019\/04\/webcast-archive-united-nations-special-rapporteur-on-the-rights-of-people-with-disabilities\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Webcast archive: United Nations Special Rapporteur on the rights of people with disabilities&rdquo;<\/span>&hellip;<\/a><\/div>\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/tvndy.ca\/en\/2019\/04\/webcast-archive-united-nations-special-rapporteur-on-the-rights-of-people-with-disabilities\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Webcast archive: United Nations Special Rapporteur on the rights of people with disabilities&rdquo;<\/span>&hellip;<\/a><\/div>\n","protected":false},"author":2,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[92],"tags":[516,515,121,599,118],"class_list":["post-4222","post","type-post","status-publish","format-standard","hentry","category-webcast-archive","tag-catalina-devandas-aguilar","tag-denise-karuth","tag-euthanasia-disability","tag-united-nations-en","tag-webcast","entry"],"_links":{"self":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4222","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/comments?post=4222"}],"version-history":[{"count":3,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4222\/revisions"}],"predecessor-version":[{"id":4674,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4222\/revisions\/4674"}],"wp:attachment":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/media?parent=4222"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/categories?post=4222"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/tags?post=4222"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}