Introduction

Webcast archive: No free choice to die – Tristan Lederman & Tyler Findlay

This week, we look at two disabled men who died as a result of untreated illness, and some good news from American autistic activists.

Webcast archive: No free choice to die – Tristan Lederman & Tyler Findlay

In this episode of Euthanasia & Disability, Amy Hasbrouck, Taylor Hyatt and Christian Debray discuss:

  • No free choice to die: Tristan Lederman & Tyler Findlay
  • US Food & Drug Administration bans shock devices

Please note that this text is only a script and that our webcast contains additional commentary.

NO FREE CHOICE TO DIE: TRISTAN LEDERMAN & TYLER FINDLAY

  • This week, we’re 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.  However, media stories about these situations raise the same concerns about portrayal of disability and access to palliative care, and adequate treatment that we’ve talked about over the past few weeks.
  • In October of 2017, 34-year-old Tristan Lederman died from an undiagnosed illness, as reported on the CBC radio programme, White Coat, Black Art.  Like Tracy Latimer, Mr. Lederman is described only in terms of his medical conditions and limitations: he “was 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].”
    • 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.
    • The word “needs” is used six times in the article to describe people with disabilities.
    • The reporter highlights the link between disability and illness, thus maintaining the medical model of disability.
  • In early 2017 Mr. Lederman developed rashes, seizures, fatigue, pain and loss of appetite.  When doctors were unable to provide a diagnosis, his family came to believe that he was dying. The reporter quotes his mother saying “I think Tristan was trying to tell us that he was on his way out.” Mr. Lederman’s parents also felt he received inadequate pain management, saying he “was constantly moaning and in pain.” He finally received a pump to administer pain medications shortly before he died.
    • The journalist does not question the family’s conclusion that Mr. Lederman’s unusual symptoms meant he was dying.
      • The article quotes his mother’s statement to the effect that Mr. Lederman was aware he was dying, in support of this conclusion.
      • The way the article is written, the problem is the doctors’ inability to determine the cause of death. But in our view, the real problem is that the doctors didn’t diagnose and treat a potentially curable illness, which might have prevented his death.
  • 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 died in 2019 after his parents decided against allowing surgery to repair a section of his bowel.
  • Again, the article is written from the point of view of the family, and mostly defines a disabled man by his limitations: “Tyler had never been able to communicate [and] needed full-time care for most of his life.” The reporter adds one anecdote about Mr. Findlay’s (non-compliant) behaviour as a humorous aside.
  • Having “made the tough decision” to not treat his condition, Mr. Findlay’s parents asked whether he could have “some medication for him to go to sleep.” The doctor said no, and when asked what would happen next, explained that Mr. Findlay would die within hours or days. Mr. Findlay died  nine days later. His family described his death as lacking compassion and dignity.
  • The refusal to consent to life-saving surgery for Tyler Findlay and the failure to pursue diagnosis and treatment for Tristan Lederman’s illness stem from the same “better dead than disabled” mindset that animated the broad public support for Robert Latimer when he murdered his daughter Tracy.  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.

US FOOD & DRUG ADMINISTRATION BANS ATTACHED SHOCK DEVICES

  • On March 4, the US Food & Drug Administration (FDA) published a “final rule” banning the use of electric shock devices worn by residents to prevent them from engaging in “self-injurious or aggressive behavior.”
  • The FDA is allowing a six month “transition period” to modify clients’ physician-directed behaviour plans. Facilities must stop using the device on all other clients when the ban comes into effect in 30 days.
  • 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 “currently being exposed.”
  • Disability rights activists in Massachusetts have been trying to ban the use of the shock devices for more than 30 years.  The Autistic Self-Advocacy Network, which joined the effort in 2009, released a statement responding to the news. “We 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…Above 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.”
  • Although this ban is a huge victory, ASAN notes that their work is far from over: “The JRC will almost certainly sue to delay or prevent the ban’s 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.”