Today marks the two year anniversary of the death of Terri Schiavo.I don't imagine I’ll ever forget that morning, receiving a phone call from Bobby Schindler to tell me he and his younger sister were just escorted out of Terri’s room. Thinking back, that might have been the first time I actually heard him crying.
That was a few minutes to 9.00am on March 31, 2005.
After hanging up, I turned on news radio and started uploading one of the recent court filings to the site hosted by her family's foundation when every phone in my home (2 land lines and 2 mobile lines) started ringing.
I stood in my home office, staring at my computer, not answering the telephones for some time. Then, I heard it come across the radio.
“Now, breaking news… Terri Schiavo has died.”
I turned the radio off. The computer. The phones. All things I don't even remember doing.
I wandered absent-mindedly into my room, sat at the foot of my bed and sobbed. And, when I say sobbed, I mean head in my hands, fitful sobbing. She was gone.
Her parents, along with her brother and sister, had fought for so long to keep it from happening this way. They begged for the ability to take care of her. They insisted she displayed signs of cognition and interacted with people — especially the mother she had adored so much.
In the end, all of it was fruitless and a circuit court judge, George W. Greer, ordered her husband and guardian to direct the removal of food and fluids from her.
He blocked clumsy attempts by state government, through the Department of Children and Families, to investigate allegations of neglect and abuse and, ultimately, to provide Terri Schiavo protective custody. The judge, it seems, was hell-bent on her dying.
To me, it was all so desperately sad.
The hangers on who used the two weeks prior to Terri’s death to gain some publicity for themselves and their agendas. The misguided political groups who used her horrid situation to pad their own pockets. The media poised outside the Hospice house where Terri lay dying of thirst, circling like vultures.
If Michael Schiavo were ever sincere about wanting to ensure his wife died with dignity, he failed miserably. There was nothing dignified, humane or even normal about her passing. It was a pity and a disgrace.
Judge Greer’s order from February of that year didn’t compel Michael Schiavo (acting as Terri’s guardian) to direct the removal of a PEG tube. It ordered him to remove all nutrition and hydration from her — ensuring a miserable and prolonged dehydration death, something I contend is strictly against Florida’s 744 statutes.
She was a mystery to most people who followed the story — hidden behind the doors of a Hospice house and a considerable, if not utterly over the top, police presence. I recall seeing news images of snipers, poised on nearby rooftops with weapons drawn.
The media only sensationalized her case, reporting on the he-said, he-said aspects of a family doing battle with the courts and an estranged spouse. Save a few reporters, they made very little mention of the laws that deal with incapacitated people in Florida. Nor did they take much time to analyze the court's rulings in contrast with those laws.
People gathered outside the Woodside Hospice house, holding signs and banners that supported everything from Terri’s basic civil liberties to her rights as a disabled person and from her religious rights to excerpts from the Bible. The news media stayed fixedly on the more religious people in the crowd, giving not an ounce of air time or any credence to the legions of disabled people who stood among them.
Unlike 2003 (when Terri’s PEG tube was removed a second time), I couldn’t endure spending much time in front of the Hospice house this time around. The crowds, the media circus and the thought of facing Terri’s heart-broken parents were all too much to bear.
So, I spent those two weeks working and publishing the court documents as soon as I had true copies. I answered emails — some supportive, some angry — and I waited. Mostly, I waited.
After the Congress made the unusual move to give the Schindler family access to the Federal Courts for a de novo review of the state trial, I was filled with hope. But, after seeing the petitions and the responses from the court, I soon knew it was wishful thinking.
And, on March 31, 2005, an innocent, disabled young woman was dead because the system had failed.
Now, I know in my heart that the Schindler family would have been devastated had they lost their first-born child in an accident or to a terminal illness. But, the burden they now bear (and will the rest of their lives) is that they lost their first-born to one of the most shoddy court rulings in this country’s history, needless neglect and a state government that waited too long and did too little to ensure the protection and privacy of an innocent citizen.
I have a very different burden. My whole purpose of engaging in the Schindler’s campaign to protect Terri was to educate people about the real meat of the matter. To give the public a reason to question what they were seeing, dissent — if you will — against an injustice against a disabled person and to nudge them back away from the idea that euthanasia, medical killing, care rationing or assisting in suicide were reasonable responses to chronic illness or physical or cognitive disability.
And, on that, I clearly failed.
Two years later, four states are pushing physician assisted suicide through the legislative pipe. Kaiser Permanente is seducing doctors willing to carry out assisted suicide. I get emails every week from people who claim their loved ones were neglected to death. The disability rights advocates are still struggling to be heard in the news media. And, if you visit any Internet message board on the subject, you'll see people dash the whole subject away as some kind of religious or cultural battle.
Even after garnering over 180,000 signatures to a petition on Governor Jeb Bush and taking Terri’s story from a back-page line item to front-page news, I still failed at what I set out to accomplish. And that is this:
Remind people that compassion is a good thing.
I had no delusions about saving Terri Schiavo’s life. I just wanted people to understand why it was wrong not to. On that, two years later, it’s clear I missed the mark.
But, I’ve always believed that for every failed effort there is an opportunity for improvement. The difference is that, now, it is on the public.
Understanding that each and every one of us is entitled to the same amount of respect, care and compassion is probably a very good start. Embracing medical killing and care rationing will bite us all in the --- and it won’t take long for that to happen.
For the tide to change, people have to engage. That means intelligent dialogue on the risks involved with putting price tags on peoples’ heads and lives. That means thinking long and hard about how we wish to be treated — as opposed to mistreated.
That bit about letting your conscience be your guide. You know the rest.
I mourn Terri deep within my heart. Because of her, yes. Most certainly because of her. But also because of what her forced death represents to all of us and that is a departure from human compassion and the protection of the basic rights of all people.
How it ends up from here depends on all of us.
