Monday, March 31, 2008

It’s Terri’s Day

Dear Terri,

Like most of the world, I met you on my TV screen.

You appeared, silent, wide-eyed, smiling, moving, and living. But I didn’t see you as much as I wanted to, because you were often lost in a jumble of breaking news items, pundits, and politicians. Lots of them.

I kept looking for you.

I kept looking for you because in the entire hubbub, you were what really mattered. Your severe disability didn’t matter, your humanness did. Whether you were supposed to be doing this or that didn’t really matter to me either, your being alive did.

While I was looking for you, I saw other things.

I saw your mom and dad, broken-hearted, desperate, resolute, teaching us what it really means to have hope. Their hope wasn’t found in making your disability go away, it wasn’t even in fighting the many ideological and political battles that threatened to overwhelm them.

Their hope was in loving and caring for you, as good parents will always try to do.

I saw your sister Suzanne. More in the background than your mom and dad, but always, always there. Concerned, devastated, but stalwart, never deserting you or the rest of her family.

I watched your brother, Bobby. Talking to anyone who would listen, reaching out to whoever wished to be supportive. An unassuming man, so very thoughtful, so very kind. I watched as Bobby taught us how to fight the good fight. He fearlessly defended you and all the good that comes from caring deeply for the least among us.

Again, I looked, but now I couldn’t see you on my TV screen any more.

You were gone from us. They had starved and dehydrated you to death.

You had been banished from the loving touch of mom and dad, from Bobby and Suzanne’s hugs.

You died before your time because some people thought you were too disabled to live, or, if you could have talked to us, that you would have told us that you didn’t want to live.

Not so.

You didn’t die because you wanted to.

You didn’t die because your family wanted you to go.

You died because the culture of death decreed that execution could be a loving act; that hubris grants the power to decide who lives and dies.

It is three years today since you succumbed to the mortal wounds inflicted by your enemies.

After these three years I looked again. You are everywhere. You help us soldier on.

There are many others like you. We will fight to protect them.

There are many families like yours. We will gather to support them.

There are many broken hearts. We will lovingly bind them.

There are many other tragic stories. We commit to telling them.

There are many adversaries. We commit to persuading them.

You are gone from our midst, but not our hearts -- not from our thoughts. Not from our hands. Not from our energy. Not from our determination.

Not from our smiles and not from our laughter.

Monday, March 24, 2008

Why We Must Always Remember Terri Schiavo

Three years ago, at 9.05 a.m., March 31st, 2005, Terri Schiavo was forced to succumb to the culture of death.

Perhaps one of the most disturbing aspects of this culture of death is its proponents' stomach-turning sanctimoniousness -- that death is good. Death is so good, in fact, that they'll obligate you to die of starvation and thirst. They'll deny you food and water because it's in your best interests. They, by golly, know what your best interests are.

That's why we need to remember Terri Schiavo -- as a polite way of thumbing our collective noses at the pious agents of death masquerading as paragons of light and love. There's nothing at all loving, or even decent, about deliberately allowing someone, whoever they are, and in whatever condition they may or may not be, to die of thirst.

Just think about that for a minute -- almost everywhere, deliberately allowing an animal to die of thirst and hunger would be considered cruelty -- as it should be. (Imagine what PETA would do!). But for Terri, and thousands like her, the playing field was different.

But alone, politely thumbing our noses isn't enough. Unless we remember Terri and her death, the playing field will continue to increasingly tilt against people with disabilities.

We must do more than remember -- we must get more involved.

There are many ways of speaking out. Speak out by helping us.

We could use your help here at the ISDB. Give us a call. I know Bobby Schindler at the Terri Schindler Schiavo Foundation could use your help. Give him a call. There's so much more we could do if we could rely on more hands, energy, and resources.

Think about it. It's a good way to remember Terri. 

Don't forget that Terri's Day is next Monday, March 31.

Don't forget. 

In remembering lies the seed for action and change.

Wednesday, March 19, 2008

David Cameron wants to be the next prime minister of the United Kingdom, so it’s tricky to judge whether his latest pronouncement Monday in London’s Daily Mail about people with disabilities is a political move or whether he really believes that people with disabilities, in his words, are defective.

Here’s what he said: Generally my approach is I want to improve the process of dealing with the genetic defects and diseases that cause so much suffering…When you have been for genetic counselling and had the answer it could be this or that it could be that, the idea of medical science advancing is not without its attractions.

At last, a new euphemism for getting rid of so-called imperfect people: improving the process of dealing with genetic defects, something which Cameron sees as an advance of medical science.

Two questions seem relevant to me.

First, why would Cameron go the defective route when his son, Ivan, has severe cerebral palsy and suffers from seizures? Ivan’s CP isn’t genetic, and was probably caused by any number of factors before or during birth. So, is Cameron making a distinction between genetic defects, which he thinks need to be “improved,” via attractive medical science advancement, and Ivan’s condition, which is not? Or, even worse, is Cameron implying that Ivan shouldn’t have been born?

Second, I think Cameron is throwing around the word defective too easily. Defective to whom? Many people Cameron would consider defective are, in other cultures, considered precious. Who decides the norms of defectiveness? Trying to reach a consensus on what is and is not a defect holds the potential for making distinctions I’d rather not consider. What other forms of defect might we invent to go along with people with disabilities? The Nazis considered Jews defective, as they did people with disabilities, including those, like Ivan, with CP and seizures. Might we, sometime in the future, consider brown eyes defective? Blond hair? Females?

Of course, we are far down the road of eliminating people with disabilities. We seem to have learned very little from the past.

Eugenics is alive and well in a country that not too many decades ago helped end the same idea and subsequent genocidal behavior that the loyal leader of the opposition now seems to support.