Ten years ago this month, the world watched as 41-year-old Terri Schindler Schiavo was starved and dehydrated to death in a Florida hospice. Contrary to popular opinion, Terri was not comatose, brain dead, or dying. She had sustained a profound brain injury in 1990 after going into sudden cardiac arrest at home. Terri was left with severe physical and cognitive disabilities, relying on a feeding tube to eat and drink. Her parents, Mary and Bob Schindler, fought an intense legal battle against her husband Michael Schiavo over whether Terri would have wanted to live in such an incapacitated condition. In response to a court ruling in Michael Schiavo’s favour, the feeding tube was removed on March 18, 2005. (It should be noted that Schiavo made a total of three attempts to end his wife’s life. He also became engaged to another woman in 1994, whom he married after Terri’s death.) That day, March 18, 2005, began Terri’s torture… and in a small Ontario town, a 12-year-old girl’s life was about to change forever.
I have lived with spastic diplegia cerebral palsy all my life, as a result of being born three months prematurely. In layman’s terms, the part of my brain that controls my legs is damaged. This reduces their movement and stamina, so I rely on a walker or electric wheelchair to get around. Growing up with a disability meant I was surrounded by information about medicine and the human body. It fascinated me – in fact, I would say I was a bit of a nerd. From an early age, I dreamed of working in healthcare and read everything I could get my hands on.
One of my favourite websites at the time was the Weird News section of Sympatico’s daily headlines. They would usually feature stories involving robbers who took naps on their victims’ couches, or cats with extra toes. In late February, however, I saw a headline that said something like “Man Seeks to Pull Plug on Wife in 15-Year Coma.” Could a coma really last that long? I had to find out. The article was drier than my science textbook, yet somehow Terri Schiavo’s name stuck in my head.
Fast forward about three weeks to March 18. I was home from school on March Break and bored to death. Watching TV was a great way to spend an afternoon. I would have flipped past CNN had I not seen her name on the screen. The news anchor used words like “coma,” “non-responsive,” and even “vegetable,” but the video footage of Terri looking at her mom told me otherwise. “Her eyes are open, she’s smiling,” I thought. “She doesn’t look comatose to me.” What was going on? I had grown up alongside people with communication and mobility impairments, and I had seen feeding tubes before. Wait a second… Terri’s feeding tube was going to be removed so that she’d die? Even more horrifying – she would starve? I was outraged. No human being should be treated like that, and Terri’s disability added insult to injury. Didn’t we all need food and water to survive? Why was giving it to her through a stomach tube so extraordinary?
Suddenly, I was thrust into a whole new world of politics – bioethics – and what it meant to be a person. I had never kept up with the news before… but now, if I was awake and away from school, I was watching CNN. As soon as I got home every afternoon, I would head straight for the TV. I stayed up late at night to watch interviews. The Schindlers’ unshakeable determination to save their daughter inspired me. So did the courage of the pro-life and disability rights activists supporting them. I cheered for those who fought to save Terri, and shared their devastation when the U.S. District Court ruled that her feeding tube could not be reinserted. The Schindlers, who were Catholic, believed that God had a plan for their daughter no matter what. Although I was not raised to practice any faith, I had been baptized in that Church. My Catholic education also introduced me to the idea of an all-powerful and all-loving God. So I began to ask spiritual questions too: if He was out there, couldn’t He save Terri? This routine continued for the next 12 days.
March 31, 2005, would mark the 13th day Terri had gone without water or food. I remember nothing about my school day. It was probably unremarkable, as Grade 7 tends to be. Yet I will never forget the horrible sense of urgency that came over me as I walked in my back door. I made a beeline for the living room couch and turned the TV to channel 36. Forget the house rule about taking off my shoes and unpacking my bags. I had more important things to do. The news anchors spent 10 minutes discussing taxes and elections, but all I could think was “Hurry up, where’s Terri?” Then the 3:30 breaking news: “At approximately 9:05 this morning, Terri Schiavo died.”
I didn’t hear anything after that. It was over. Terri was gone.
I remember diving into the pillow next to me, wanting to muffle a scream. No sound would come out. I stayed there and cried. Those few minutes felt like two hours. When the tears subsided, helplessness and frustration took their place. What was I supposed to do now? I never wanted to see another person go through the horror Terri experienced.
Over those two weeks, I had come to the conclusion that if God had a plan for Terri in her limitations, then He must have one for me too. I promised myself and the One who made both of us that I would do whatever I could to stop anyone else from being starved. Remember, I was still in middle school then. Keeping myself informed was my only option. I followed Terri’s family and kept up with stories of other medically vulnerable people.
Now that 10 years have passed, I hope I’ve begun to follow through. I am a human dignity activist, engaging the media and the public on the issues of disability rights, abortion, and euthanasia. Last summer, I had the honour of meeting Terri’s brother, Bobby Schindler, via Skype. I also interviewed him about his disability rights work for a story that appeared in The Interim. Tremendous as these accomplishments may be, none of them diminish the fact that an innocent woman died.
One thing consoles me to this day. In speaking for the dignity of the most vulnerable, I am working so that others will be acknowledged in ways Terri was not. It is too late for her, but as I’ve learned, she is not the only one. I will spend my life doing what I can to combat injustice, in memory of Terri.
Taylor Hyatt, a linguistics student at Carleton University in Ottawa, is a former Interim summer student.