Freedom and the “Right to Die”

Today, I offer some very personal musings about how we treat disabled people in our laws.

One recurring theme in this patient safety blog is to promote self-determination for patients as the best guide through a tortuous, mistake-prone medical care system. If you learn enough about your own condition, that will help you get the best possible care. So I should be all in favor of the “right to die” ballot measure that Massachusetts voters will decide next Tuesday, right? Wrong.

The trouble with “right to die” laws, or “assisted suicide,” is that it’s too easy to morph from a sick or disabled person’s “right” to die to the “duty” to die.

Ben Mattlin, a disabled journalist who has never walked in 50 years, put this well in an op-ed he wrote in today’s New York Times. His final paragraph:

To be sure, there are noble intentions behind the “assisted death” proposals, but I can’t help wondering why we’re in such a hurry to ensure the right to die before we’ve done all we can to ensure that those of us with severe, untreatable, life-threatening conditions are given the same open-hearted welcome, the same open-minded respect and the same open-ended opportunities due everyone else.

By coincidence, today is the 23rd birthday of my autistic, mute son Brendan. Is his a life worth living? The sparkle in his eyes says:

“Most definitely, yes.”

We already have the “right to die” everywhere. In no state is it illegal to take your own life. The new laws for “assisted suicide” are ostensibly about enlisting a doctor’s help when the disabled person cannot complete the suicide without help. But there’s a very slippery slope here. The real point is about society’s attitude toward those with disabilities, who may appear, from the outside, to have lives not worth living.

The advocacy group, Not Dead Yet, has a lot to say about this. A couple of quotes from its web site:

In a society that prizes physical ability and stigmatizes impairments, it’s no surprise that previously able-bodied people may tend to equate disability with loss of dignity. This reflects the prevalent but insulting societal judgment that people who deal with incontinence and other losses in bodily function are lacking dignity. People with disabilities are concerned that these psycho-social disability-related factors have become widely accepted as sufficient justification for assisted suicide.

And another:

In judging that an assisted suicide request is rational, essentially, doctors are concluding that a person’s physical disabilities and dependence on others for everyday needs are sufficient grounds to treat them completely differently than they would treat a physically able-bodied suicidal person. There’s an established body of research demonstrating that physicians underrate the quality of life of people with disabilities compared with our own assessments.

And a final one:

Disability is at the heart of the assisted suicide debate. Some people fear disability as a fate worse than death. Proponents of legalized assisted suicide are willing to treat lives ended through assisted suicide coercion and abuse as “acceptable losses” when balanced against their unwillingness to accept disability or responsibility for their own suicide.

Read more on the Not Dead Yet web site.

Here’s something I wrote about Brendan for Father’s Day some years back.

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