{"id":4757,"date":"2020-03-13T15:58:22","date_gmt":"2020-03-13T15:58:22","guid":{"rendered":"https:\/\/tvndy.ca\/?p=4757"},"modified":"2020-03-16T16:10:18","modified_gmt":"2020-03-16T16:10:18","slug":"webcast-archive-no-free-choice-to-die-tristan-lederman-tyler-findlay","status":"publish","type":"post","link":"https:\/\/tvndy.ca\/en\/2020\/03\/webcast-archive-no-free-choice-to-die-tristan-lederman-tyler-findlay\/","title":{"rendered":"Webcast archive: No free choice to die &#8211; Tristan Lederman &#038; Tyler Findlay"},"content":{"rendered":"<p><iframe loading=\"lazy\" width=\"1180\" height=\"664\" src=\"https:\/\/www.youtube.com\/embed\/yfuYEFfan1w?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, Taylor Hyatt and Christian Debray discuss:<\/p>\n<ul>\n<li>No free choice to die: Tristan Lederman &amp; Tyler Findlay<\/li>\n<li>US Food &amp; Drug Administration bans shock devices<\/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>NO FREE CHOICE TO DIE: TRISTAN LEDERMAN &amp; TYLER FINDLAY<\/strong><\/p>\n<ul style=\"font-weight: 400;\">\n<li>This week, we\u2019re looking at how the parents of some disabled adults are seeking the right to request euthanasia on their behalf. Like Robert Latimer, these families cite the ill health and suffering of their disabled relatives as the reason euthanasia is needed.\u00a0 However, media stories about these situations raise the same concerns about portrayal of disability and access to palliative care, and adequate treatment that we\u2019ve talked about over the past few weeks.<\/li>\n<li>In October of 2017, 34-year-old Tristan Lederman died from an undiagnosed illness, as reported on the CBC radio programme,\u00a0<a href=\"https:\/\/www.cbc.ca\/radio\/whitecoat\/family-fighting-for-better-end-of-life-care-for-people-with-severe-disabilities-after-son-s-painful-death-1.4935131\">White Coat, Black Art<\/a>.\u00a0 Like Tracy Latimer, Mr. Lederman is described only in terms of his medical conditions and limitations: he \u201cwas born hydrocephalic and had cerebral palsy. He could not see, walk or do anything for himself, relying on his parents and at-home caregivers for all his needs. But like a lot of other young adults with extraordinary medical needs, his health took a turn [for the worse].\u201d\n<ul>\n<li>There is no mention of his skills, interests, personality, accomplishments and contributions to his family and community. The journalist also fails to explore what supports might have enabled him to live independently.<\/li>\n<li>The word \u201cneeds\u201d is used six times in the article to describe people with disabilities.<\/li>\n<li>The reporter highlights the link between disability and illness, thus maintaining the medical model of disability.<\/li>\n<\/ul>\n<\/li>\n<li>In early 2017 Mr. Lederman developed rashes, seizures, fatigue, pain and loss of appetite.\u00a0 When doctors were unable to provide a diagnosis, his family came to believe that he was dying. The reporter quotes his mother saying \u201cI think Tristan was trying to tell us that he was on his way out.\u201d Mr. Lederman\u2019s parents also felt he received inadequate pain management, saying he \u201cwas constantly moaning and in pain.\u201d He finally received a pump to administer pain medications shortly before he died.\n<ul>\n<li>The journalist does not question the family\u2019s conclusion that Mr. Lederman\u2019s unusual symptoms meant he was dying.\n<ul>\n<li>The article quotes his mother\u2019s statement to the effect that Mr. Lederman was aware he was dying, in support of this conclusion.<\/li>\n<li>The way the article is written, the problem is the doctors\u2019 inability to determine the cause of death. But in our view, the real problem is that the doctors didn\u2019t diagnose and treat a potentially curable illness, which might have prevented his death.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<li>Another couple, Lynn and Dave Findlay, are hoping that the eligibility criteria for euthanasia will someday expand to include requests submitted by substitute decision makers. Their 25-year-old son Tyler\u00a0<a href=\"https:\/\/winnipeg.ctvnews.ca\/mobile\/dying-with-dignity-winnipeg-family-wants-easier-access-to-medically-assisted-dying-after-their-son-s-death-1.4841233?cid=sm%3Atrueanthem%3Actvwinnipeg%3Amanualpost&amp;utm_campaign=trueAnthem%3A+New+Content+%28Feed%29&amp;utm_medium=trueAnthem&amp;utm_source=facebook\">died in 2019<\/a>\u00a0after his parents decided against allowing surgery to repair a section of his bowel.<\/li>\n<li>Again, the article is written from the point of view of the family, and mostly defines a disabled man by his limitations: \u201cTyler had never been able to communicate [and] needed full-time care for most of his life.\u201d The reporter adds one anecdote about Mr. Findlay\u2019s (non-compliant) behaviour as a humorous aside.<\/li>\n<li>Having \u201cmade the tough decision\u201d to not treat his condition, Mr. Findlay\u2019s parents asked whether he could have \u201csome medication for him to go to sleep.\u201d The doctor said no, and when asked what would happen next, explained that Mr. Findlay would die within hours or days. Mr. Findlay died\u00a0 nine days later. His family described his death as lacking compassion and dignity.<\/li>\n<li>The refusal to consent to life-saving surgery for Tyler Findlay and the failure to pursue diagnosis and treatment for Tristan Lederman\u2019s illness stem from the same \u201cbetter dead than disabled\u201d mindset that animated the broad public support for Robert Latimer when he murdered his daughter Tracy.\u00a0 As long as journalists, families, politicians and the public view disabled lives as less than fully and equally worth living, our choice of where, how, and even if we live, will be limited by private decisions and public policies.<\/li>\n<\/ul>\n<p><strong>US FOOD &amp; DRUG ADMINISTRATION BANS ATTACHED SHOCK DEVICES<\/strong><\/p>\n<ul style=\"font-weight: 400;\">\n<li>On March 4, the US Food &amp; Drug Administration (FDA) published a \u201cfinal rule\u201d<a href=\"https:\/\/www.fda.gov\/news-events\/press-announcements\/fda-takes-rare-step-ban-electrical-stimulation-devices-self-injurious-or-aggressive-behavior\">\u00a0banning the use of electric shock devices<\/a>\u00a0worn by residents to prevent them from engaging in \u201cself-injurious or aggressive behavior.\u201d<\/li>\n<li>The FDA is allowing a six month \u201ctransition period\u201d to modify clients\u2019 physician-directed behaviour plans. Facilities must stop using the device on all other clients when the ban comes into effect in 30 days.<\/li>\n<li>A federal regulation banning electric shock devices was originally proposed in 2016. Only one American institution still uses them: the Judge Rotenberg Center (JRC) in Canton, Massachusetts. According to the FDA, about 50 people are \u201ccurrently being exposed.\u201d<\/li>\n<li>Disability rights activists in Massachusetts have been trying to ban the use of the shock devices for more than 30 years.\u00a0 The Autistic Self-Advocacy Network, which joined\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2018\/04\/webcast-archive-stop-the-shocks-at-the-judge-rotenberg-center\/\">the effort<\/a>\u00a0in 2009,<a href=\"https:\/\/autisticadvocacy.org\/2020\/03\/asan-welcomes-ban-of-electric-shock-torture\/\">\u00a0released a statement<\/a>\u00a0responding to the news. \u201cWe are relieved beyond measure that soon our community members will no longer be punished with dangerous electric shocks for doing things like standing up without permission, making noises, or crying in pain. This ban is long overdue\u2026Above all, we are grateful to the survivors of the Judge Rotenberg Center. Without their advocacy, testimony, and the evidence they brought forward, publicly and privately, this regulation would not have been finalized.\u201d<\/li>\n<li>Although this ban is a huge victory, ASAN notes that their work is far from over: \u201cThe JRC will almost certainly sue to delay or prevent the ban\u2019s implementation; we must stay in the fight, or risk ending up back where we started. And while the JRC will be forbidden from using electric shock devices, it is still allowed to use other forms of torture and abuse, including starving its residents, as a means of punishment and to control behavior.\u201d<\/li>\n<\/ul>\n   ","protected":false},"excerpt":{"rendered":"<div class=\"entry-summary\">\n<div class=\"entry-summary\">\nThis week, we look at two disabled men who died as a result of untreated illness, and some good news from American autistic activists.\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/tvndy.ca\/en\/2020\/03\/webcast-archive-no-free-choice-to-die-tristan-lederman-tyler-findlay\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Webcast archive: No free choice to die &#8211; Tristan Lederman &#038; Tyler Findlay&rdquo;<\/span>&hellip;<\/a><\/div>\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/tvndy.ca\/en\/2020\/03\/webcast-archive-no-free-choice-to-die-tristan-lederman-tyler-findlay\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Webcast archive: No free choice to die &#8211; Tristan Lederman &#038; Tyler Findlay&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":[451,208,121,130,705,706,118],"class_list":["post-4757","post","type-post","status-publish","format-standard","hentry","category-webcast-archive","tag-autistic-self-advocacy-network","tag-cbc","tag-euthanasia-disability","tag-latimer","tag-tristan-lederman","tag-tyler-findlay","tag-webcast","entry"],"_links":{"self":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4757","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=4757"}],"version-history":[{"count":3,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4757\/revisions"}],"predecessor-version":[{"id":4763,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4757\/revisions\/4763"}],"wp:attachment":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/media?parent=4757"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/categories?post=4757"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/tags?post=4757"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}