March 31st will mark the five-year anniversary of the needless death of my sister, Terri Schiavo.
It is difficult to believe this much time has passed since that horrible event which will be forever seared into my memory.
I wish I could say things have changed for the better since my sister’s death or that people with cognitive disabilities are now better protected in response to the horror she had to endure.
Tragically, however, it seems the rights of the brain-injured, elderly and others are still being violated.
All one has to do is look at what happened just last week. On March 21st, Fox aired an episode of The Family Guy that featured a "sketch" called "Terri Schiavo: The Musical." I was astonished at the producer’s cruel bigotry directed towards my sister and all cognitively disabled people.
Sadly, although more offensive than what my family has seen in the past from the media since Terri died, the bald-faced ignorance expressed in that episode of The Family Guy was nothing new. In fact, all signs indicate that we have embarked on a very disturbing path.
There is no disputing that Terri’s life – and death – had an astonishing impact on our nation. Our family still receives letters, emails and phone calls almost every day from people who tell us how Terri’s story touched them in profound ways, particularly when they come to know the facts.
Indeed, it was because of my family’s experience trying to protect Terri that we realized how all persons with similar cognitive disabilities are completely vulnerable to state laws that currently make it “legal” to deny them the most basic care – food and water.
This horrifying realization was why we established Terri’s Foundation. In Terri’s name, my family now works to protect tens of thousands of people with similar brain-injuries from having their fundamental freedoms taken away by an aggressive anti-life movement hell-bent on portraying severely disabled and otherwise vulnerable human beings as nothing more than “useless eaters”.
If the amount of phone calls we receive is any indication, what happened to Terri has become common. I think most people have no idea how our individual rights to make decisions about basic care like food and water, antibiotics, etc., have been so dramatically eroded. This not only includes family members advocating for loved ones but also protecting oneself by medical directive.
We recently heard from a woman whose mother was being cared for at a hospice facility. The daughter was powerless to effectively advocate for her mother because she had no power of attorney.
Even though she was her mother’s next-of-kin, and despite the fact her mother was begging her for food, the daughter was not allowed to feed her. It had been determined the mother was no longer able to swallow. But the daughter said her mother was eating safely just prior to being sent to hospice and questioned whether she still could. The mother was not given a feeding tube, and died just a short time later.
Perhaps the “Death Panels” Sarah Palin spoke of sounded like bombastic language. Yet when Palin added this term into our nation’s debate on health care, I believe she did not realize that many hospitals and facilities already have something frighteningly similar. Ethics committees are making many life and death decisions about patients, including whether to withhold simple provisions.
In a seemingly clandestine way, these ethics committees – comprised of medical and legal professionals – are empowering facilities to make life and death decisions independent of the family or a person’s own wishes.
The chilling stories we receive make it clear few citizens have any idea how vulnerable they are when it comes to judgments left in the hands of these ethics committees and facilities. And with the federal government now controlling our health care, there is no reason not to believe that these types of committees won’t become nationalized. Particularly when a health care system has been sabotaged by cost factors and quality of life judgments.
When our office receives phone calls from people fighting for their loved ones, I cannot help but look back and reflect on the courage of many individuals and groups who advocated on behalf of my sister.
As time has passed, however, many of those people, organizations and politicians – even many of our own friends – have fallen silent. Many who once ardently supported Terri’s life no longer actively educate or advocate for vulnerable patients.
With each troubling phone call from a frantic family, I am reminded there are countless other Terris in desperate need of our voice. Terri’s Foundation has been successful helping to save some, but sadly so many others have fallen victim.
I understand our nation faces many challenges today that may threaten our very existence. But how can we claim to be a just and honorable society, deserving of any blessing at all, if we richly reward hateful bigots while refusing to protect our weakest citizens?
Moreover, how did the tremendous courage and kindness we saw when we were fighting for Terri’s life have faded? How can any of us abandon this issue when all signs are that things are getting worse?
There are still many who support our efforts, who recognize the erosion of the value and dignity of the medically weak and who believe in protecting the life and liberty of all human beings.
The problem is their voices are often drowned out by the din of the pro-death lobby that claims death is the only dignified answer to a complicated problem.
Meanwhile the pro-death movement has not fallen silent. Rather, it has grown more vocal. The issue for them did not die with Terri. Indeed, their success in killing her seems to have only bolstered their determination to gain wider acceptance among the American people.
There will always be people with needs, there will always be others who work tirelessly to help them, and there will always be those who turn the other way; or worse – sit behind their drawing tables, disseminating cruel bigotry and hatred toward the disabled and vulnerable.
Until we all recognize that our inherit worth doesn’t change because of life’s circumstances, illness, disability or other events, we will continue to rob our most vulnerable of their right to fairness, justice and the ability to guide their own course in life.