Last week, former U.S. President, George W. Bush released a memoir of his tenure in office called “Decision Points.” In this 500-plus page account, Bush revisits a number of official and personal events, as well as choices that shaped both his presidency and his attitudes in private life.
I was disappointed to learn that Bush’s actions in March of 2005—that led to the passage of Terri’s Law—were not a part of this account. On March 20, 2005 in what was called the Palm Sunday Compromise, Congress passed “Relief of the Parents of Theresa Marie Schiavo”—a law that gave the Federal court access to review of the case to dehydrate my sister, Terri Schiavo, to death. President Bush left his home in Texas—in the middle of the night—to return to Washington, D.C. in order to sign this bill into law.
Some would praise him as a pro-life hero and a friend to the disabled. Others sharply criticized him for involving himself in a state circuit case. Yet nearly all would remark that his actions were extraordinary and historic.
Why, then, has Bush not recounted that experience in his memoir? A friend has reasoned with me that Bush may have some regrets over the matter, or even embarrassment with how it was handled and eventually politicized by both politicians and the corporate media.
I tend to think there is something more at play. Indeed, no major media outlets or political pundits have revisited Terri’s case since her death in 2005. It’s almost as though a memorandum has been circulated warning those in positions of influence that Terri’s name is political poison, or that the notion of forced death died with Terri on that day in March.
Unfortunately, it did not. As we have seen through our work to protect the lives of disabled people, cases like Terri’s persist. They just simply aren’t getting the “face time” anymore.
People like Sean Hannity, Rush Limbaugh and so many others were tremendous supporters of Terri’s rights in the years we fought to protect her life. Now they’ve fallen silent on the issue, and it’s an issue that isn’t going away. It is most troublesome.
Care rationing and the act of denying profoundly disabled people ordinary care (such as food and hydration via feeding tubes, antibiotics, etc.) is as prevalent now as it was when Terri’s case was making its way through Florida’s Sixth Judicial Circuit. The reason you don’t hear about such things is clear: media leaders and public servants simply won’t talk about them.
There appears to be a fear of taboo in mentioning the Schiavo case, and perhaps that’s because of how it played out and how polarizing it ultimately became. But, let’s not forget that Terri’s case was one that was watched across the globe, was discussed by civil liberties proponents, in religious communities, through groups serving the needs of disabled people, and even in the halls of Congress.
This was no small story and it brought to light a very scary proposition: that your rights fall into incredible jeopardy the moment your life is touched by a disability or complicated illness.
The danger hasn’t gone away. Indeed, it might be getting worse. But the conversation that favors life has dried up. The debate over privacy interests has been dismantled. And the awareness of the rights of disabled and ailing people is all but a memory.
When you do hear chatter or witness opinion on life and death, it’s nearly always on the side of death. Recently economist and New York Times columnist, Paul Krugman, opined that the answer to our current financial crisis is a combination of sales taxes and death panels. There’s that term again.
But Krugman is not alone. There are plenty of proponents of recent health care legislation that would be happy to tell you that cooler heads need to decide who’s fit to live and who’s entitled to receive wanted care. Not surprisingly, they oftentimes point out older Americans and those with incurable conditions as the ones who are no longer viable.
If we are to protect our own lives then we must reject such notions and be keenly aware of how the laws work, how to advocate for ourselves, and why it’s important to do so. That includes the sharing of knowledge on difficult cases, similar to Terri’s, and how they find their way into our country’s courts.
My sister’s situation presented a unique opportunity for those in the public eye to bring forward the issues surrounding health care, disability, personal liberties and retained rights. And prior to her death, they did. My family and others touched by this issue were grateful. But, where are they now?
It may go without saying, but rarely does a day go by that I don’t think about my sister and the suffering she was made to endure. I’m also very much aware that there are countless others who face the same fate, particularly so since the organization we established in Terri’s memory receives hundreds of calls from people who are desperate for help in defending a loved one’s life.
When Terri died, President Bush issued the following statement:
“Today millions of Americans are saddened by the death of Terri Schiavo. I urge all those who honor Terri Schiavo to continue to work to build a culture of life, where all Americans are welcomed and valued and protected, especially those who live at the mercy of others. The essence of civilization is that the strong have a duty to protect the weak. In cases where there are serious doubts and questions, the presumption should be in the favor of life.”
He’s correct, of course. But if Mr. Bush is not writing and reflecting about it today—and if we’re not talking about it—then we’re not educating people like we should. Consequently, we’re not doing what’s necessary to spread that message. We’re pushing the issue aside and pretending it’s no longer a problem. Avoidance and denial of what happened to Terri is not going to save lives or protect the liberties of individuals today and in the future. Aggressively working to teach the public the truth about this vital topic so that innocent Americans can never be starved and dehydrated to death again is the right course and commitment.
The people who do not value your life have plenty to say; and they are rather bald-faced about it.
If people like President Bush truly believe the lives of vulnerable people are worthy of protection, they need to come back to the table and defend those lives with vigor and resolve— now, tomorrow and for years to come.