Dear Terri...

by Taylor Hyatt

1st Place, Prose, Create | Encounter 2025

Dear Terri…

I was just a few weeks away from turning 13 when you died. An observer might say I “grew up” in an instant: in that month or so between when I first became curious about your story, and when your life ended. After your passing, I continued to grow “alongside” the world’s reaction to your death – trying to figure out my place in the world:

• as a young girl – dealing with family upheavals and middle school life at the same time that you prompted my radical “awakening” to the world’s capacities for cruelty, indifference, and injustice.

• as a convert to the Christian faith – that, too, was inspired by you and those around you who believed in the value of your life post-brain injury – although much of it is a tale for another day…

• and – as I grew in knowledge, skill, connections, and the tools I had at my disposal – as an activist. 

“Before you,” I was…a preteen: young enough that I didn’t follow the news on a regular basis, other than keeping up with a few big events on TV and in the papers. My world was a pretty small one. I lived in a little town in Ontario, Canada, and spent time with 7^th grade classmates and friends, a close-knit family, neighbours…and medical professionals. I was born with a physical disability which required regular therapy and monitoring in my formative years. In order to make sense of my experience and take the best possible care of myself, I was immersed in information about the workings of the human body. I would describe myself as “a medical nerd” – I was fascinated by it all, and read everything I could get my hands on. My earliest career dreams centred around working in healthcare in some capacity. 

At the same time, I felt the need to prove myself to people around me, compensating for my physical limitations by throwing myself into academics and intellectual pursuits. As a young kid, I was obsessed with books about “fun facts” and trivia, and the “weird and wacky” sections of news outlets. To name two questions I saw: What would happen if a would-be robber dozed off on his victim’s couch and got caught? What common condition affects the health of Dutch elm trees? 

One day, in February 2005, I saw a headline on Sympatico News that read “Man Seeks to Pull Plug on Wife in 15-Year Coma.” I had never heard of a coma lasting that long, but had to find out more. I remember nothing about the article, but your name would stay with me.  

A few weeks later – on March 18, 2005 – I was home from school on March Break, bored, and channel-surfing in my room. “Florida Woman’s Feeding Tube Being Disconnected” said the headline on Channel 36: CNN. Again, I saw “Terri Schiavo” at the bottom of the news ticker – and froze.

There you were: the video clip showed your eyes open, as you smiled at the person in front of you. Despite clear cognitive and physical limitations, you were clearly aware of at least some things – not completely “comatose” and “non-responsive” as the newscaster claimed. I had known people with similar disabilities. There was nothing unusual about the supports they used to eat and communicate every day. As I watched, I learned that your feeding tube was going to be removed at the request of a court ruling initiated by your spouse, who insisted that you would not want to live with these conditions. When, then, was the tube going to be put back in? 

I came to a horrifying realization: Wait…they’re NOT!? Don’t we all need to eat? Didn’t they know you would starve? Why is a feeding tube such a big deal? No human being should be treated this way, and our common status as disabled people added greater insult to injury. I was immediately outraged, and terrified for you.

Yes – supporters of the feeding tube’s removal knew you would starve – and that was the point! Your condition, of course, was different from the situation of someone who is truly dying. As someone’s body shuts down, they are no longer able to process food and water. In fact, maintaining access to food in this case may be painful. You were “supposed to slip away” – gently, quickly, painlessly – from the “prison” your body had become. (As your brother later recalled, your last days were far from peaceful: “After almost two weeks without food or water, my sister’s lips were horribly cracked, to the point where they were blistering…Terri’s breathing became rapid and uncontrollable, as if she was outside sprinting…What will be forever seared in my memory is the look of utter horror on my sister’s face.”) 

Suddenly, I was drawn into far-reaching questions of bioethics, and the landscape of American politics. (My family lived in small-town Ontario, Canada, and up to that point, I had hardly observed political developments closer to home!) I went from occasional glances at news stories to watching CNN whenever I could. I found myself in a new routine: I would come home from school and head straight for the TV. I stayed up late at night to watch interviews and court proceedings, and quickly learned who saw your inherent value, and who did not. Many people thought you were no longer alive, or at least better off dead than disabled after your brain injury. Commentators called you a tool of the Christian Right. They did not see, or maybe intentionally overlooked, the disability rights advocates who saw your torturous end for the human rights violation that it was – even though most of those same activists would not touch matters of faith with a 50-foot pole. Having used similar aids themselves, they knew that use of a feeding tube and assistance of nurses were nothing to fear. Of course, your mom, dad, and siblings – along with many others who shared their traditional pro-life and Catholic convictions – also did everything they could to try to save your life and care for you. 

March 31, 2005, was, for the most part, probably like any other day in seventh grade. It was the 13^th day that you had gone without food and water, and the last day of your life on earth. I will never forget the urgency that came over me. Forget the normal house rules: my shoes were still on, and my bag remained unpacked. Instead, I had to know how you were doing. Click – on went the news. I sat through 10 agonizing minutes of chatter about taxes, oil prices, and elections…hurry up, where’s Terri? Then the 3:30 breaking news: “At approximately 9:05 this morning, Terri Schiavo died.”

I remember wanting to scream – diving face-first into a pillow next to me, hoping to muffle the sound – but the cry of my heart never made it to my lips. Instead, a few minutes of tears felt like two hours. 

And then…I learned to measure time “after” you. Truly, it ripped my life in two. As the shock passed, a question took its place: what was I supposed to do now? You were the first person I watched die in such a cruel way, and some part of my teenage naivete desperately wanted you to be the last, too. I made a promise to myself, to you, and to the higher power I was discovering that I would do anything I could to prevent others from meeting the same fate. Being in middle school at the time, my only option was to stay informed about your family’s advocacy, stories of people in similar situations, and the legal mechanisms behind them. Around the 10-year anniversary of your passing, in 2015, I had begun to transition from advocating primarily for prenatal human beings to ill, disabled, and aging ones. The summer before, I had the chance to connect with your mom and brother. What a privilege to let them know how your story changed my life! 

Now, twenty years after the world watched (and, to a large extent, supported) the brutal way your life was cut short…what has changed? In some ways, a great deal: support for the mindset behind your spouse’s actions has only increased. (To this day, if someone searches for your name online, one of the most common queries has the demeaning and dehumanizing term “vegetable” after it – “Terri the Turnip,” you were called. The insult still makes my blood boil.) 

Governments around the world are beginning to open the door to medical practices specifically designed to kill – not to heal, and avoid harm, as in medicine’s original aim. Legislators – in a gesture of apparent mercy and kindness that is actually anything but – seem to think an injection of a lethal substance is preferable to life with disabilities as severe as yours, and an easier way out than the starvation and dehydration to which you were condemned. This intervention – or lack of it – was intended to give you peace and rest. As family and spiritual leaders who visited you in your last weeks attested, slowly starving and dehydrating a woman with multiple disabilities, while she looked at those around her with sadness and fear, begging for rescue…led to neither of those states.

For my part, I have appeared on news websites and TV broadcasts, made media statements at the Supreme Court, worked full-time in disability policy for a few years, testified before the Canadian Senate about lethal disability discrimination in the medical system, and so much more. Even though it is no longer my main employment, I continue to engage in writing, policy work, and advocacy whenever I can. 

Tremendous as these accomplishments may be, none of them change the fact that they were motivated by your unjust death, and the deaths of many others. Every March 31^st has become a day to grieve and remember you, and the growing number of people whose lives have ended with the cooperation of the medical field. As I’ve written this note, I’ve revisited video footage that your family has saved. I am left convicted and heartbroken – my heart is transported to your last days all over again. All I can say is I’m sorry. It didn’t have to be this way. Terri, you should still be here – able to delight in good music, nature, and the presence of people you loved as you used to. 

My chief consolation is this: that my work to promote the dignity of the human person will hopefully help others to be acknowledged – and may lead to lives saved – in ways that you were not. I will keep the promise I made: to spend my life doing what I can to combat injustice against people with disabilities like ours, and to honour your memory.