In this episode of Euthanasia & Disability, Taylor Hyatt discusses:
- Taylor’s introduction: how did she start working with TVNDY?
Please note that this text is only a script and that our webcast contains additional commentary.
TAYLOR’S INTRODUCTION: HOW DID SHE START WORKING WITH TVNDY?
You’ve seen me on the webcasts, and I’ve been working with TVNDY for a few months…but you’re probably wondering how I got here. To start with, I have cerebral palsy because I was born prematurely; this means that I’m a walker and wheelchair user. I’ve been surrounded by medical language from a young age, and as a kid, I was a bit of a nerd. I read everything related to the human body that I could get my hands on, which is probably why I was drawn to a headline in MSN’s “Weird News” shortly before turning 13. (This was around February 2005.) The story said something like “Man Wants to Stop Life Support for Wife, In Coma for 15 Years.” How could a coma last that long? I had to find out. I remember nothing except that the article bored me to death.
A few weeks later, I was home from school on March Break, bored again, and channel surfing. I got to CNN and saw a headline along the lines of “Florida Woman’s Feeding Tube Being Disconnected.” I understood what a feeding tube was; I had known people who used them. The face of this woman, whom I would soon know as Terri Schiavo, was the same as the piece I’d seen online…now I was curious. To this day, there are still disagreements about her condition, level of awareness, and what she might have thought about remaining in an incapacitated state. This is what I saw:
She’s not dying, or in a coma, at all. Her eyes are open. She’s responding to her family [even though she has a lot of physical and cognitive limitations due to her disability]. And the only “life support” she needs is a feeding tube. Don’t we *all* need to eat? They’re taking the tube out. When are they putting it back in? Oh, wait…they’re NOT!? She’ll starve that way. And that was the point.
Over the next two weeks, I couldn’t stay away from the TV. The interviews, the court hearings, the protests…I watched it all, and began to see a clear divide. On one side – those who thought Terri was no longer alive, or at least better off dead than disabled after a serious brain injury. On the other – people who saw use of a feeding tube, nursing support and the care of her loving family as nothing to fear. Quite a few people in this second group were disability rights activists.
March 31, 2005, was probably like any other day in Grade 7. What happened when I got home from school, though, was very different. I remember heading right for the TV and turning on CNN. “Terri Schiavo Dead at 41.” the broadcast said. I was shocked, though I shouldn’t have been. Terri had lived 13 days without eating or drinking. The one thing I knew was that I never wanted to see another person treated so cruelly. I promised myself that I would one day advocate for people in her position, even though I had no clue what that might look like.
I spent the next few years reading – usually stories about extreme end-of-life measures, and all from the US. Futile care statutes, traumatic brain injuries, euthanasia, Haleigh Poutre, Joseph Maraachli, Wesley Smith, and the occasional story with Dr. Kevorkian in it popped up on my computer regularly. When I read blogs discussing assisted suicide, especially Terri’s situation, I also found extremist political fights – people who hated and mocked Democrats, for example. Fortunately, I was rather indifferent to these ideas. My family was very confused. This high school student who didn’t pay attention to politics was now concerned about…lethal injections and life support in the country next to us? I couldn’t do much besides defend my position in school when the topic came up. I had “done the telethon thing,” served as a representative for local and provincial disability organizations, and participated in mentorship groups for disabled youth in my small town…but this was by far the most “serious” issue I followed.
Moving away to go to university opened up ways to act on what I knew. I met Alex Schadenberg of the Euthanasia Prevention Coalition in 2013, through contacts in the pro-life movement. That summer, I had the opportunity to add a disability rights perspective to a pro-life bioethics newspaper. (I continued to write full-time for the paper – and on a freelance basis during the school year – until the fall of 2015.) My articles discussed things like accessibility in Toronto (where the paper is based), disabled children being killed by relatives, and my thoughts on the Carter Supreme Court decision. My practical dream of a career in speech therapy went out the window, and I wondered how to combine my renewed passions for words and messy ethical issues. Any other disability matters I spoke out on were local – housing, transit, and other barriers my friends and I encountered in the city.
The end of 2014 marked the beginning of more intense advocacy. I began taking classes for my communications minor. One day, a well-meaning professor told me that in order to finish it, I might have to spend an extra year or two in school beyond what I originally planned. (I didn’t.) This frustrated me so much that I almost gave up on my new plans right then and there. Fifteen minutes after I got home, Alex called. “What are you doing on Friday?” he asked. “EPC doesn’t have a representative in Ottawa, and I need someone to be there for the Carter case at the Supreme Court.” I took it as a sign to keep going, and juggled interviews alongside school for the rest of the week. Some news clips that were framed as a “debate” between myself and then-MP Steven Fletcher received a lot of attention. Amy, Christian and I also met at that time. We returned to the Supreme Court for the release of the decision in February. Rushing between campus and news cameras made me feel like I was living a double life.
When Bill C-14 was introduced, I was playing a very different role. I had gotten a contract job in the office of a member of Parliament who shared my views on assisted suicide, and was able to watch the process from the earliest drafts to passage of the law. I was responsible for finding witnesses to speak before committees, proofreading my boss’s comments and amendments for the bill, and taking notes in meetings with groups opposing assisted suicide. The most awkward experience was attending a Euthanasia Prevention Coalition rally on Parliament Hill where my boss spoke. I didn’t want to be known as “that radical” among Parliamentary staff.
The contract ended almost a year and a half ago. I’d spent ten months trying to get back into the government, with no luck. I heard about an opening with TVNDY in June and decided to take it. I’m happy to be working with dedicated advocates who can speak out against assisted suicide as a disability issue from a perspective of empowerment, and without getting caught up in unrelated controversies like religion or gay marriage.