May, 1999

Georgette Smith, Shirley Egan and us

Let's not forget that this current right-to-die tale began with Shirley Egan not wanting to live in a nursing home. .

There was little disability activists could do other than watch as the sorry saga of Georgette Smith unfolded. It wasn't the first and it won't be the last.

Smith's request to die burst like a boil onto national consciousness when she sought a court order May 13 to be taken off the ventilator keeping her alive. Like a boil that's soon excised, Smith's May 19 death will disappear below the surface of our consciousness. Until another paralyzed person makes news, once again, for the same thing.

A few hundred manage it; some make news when they bring the courts into it, but thousands of quadriplegics -- almost all of them, some say -- want to end their lives when they first become disabled. That's what a chaplain at Atlanta's Shepherd Center, the Southeast's premier spinal cord treatment center, told reporters.

Well, naturally. That's what people think. "I'd rather die than live like that," we say when we see a Georgette Smith.

That's pretty much what she said, too. "All I can do is wink my eyes and wiggle my nose, wiggle my tongue. I can't move any other part of my body,'' Smith said in court papers. "I can't live like this.''

"Don't leave me this way," she said.

Newly injured quadriplegic Larry McAfee said much the same thing a decade ago. But the right to die had not progressed so far; there wasn't the case law there is today; the court had to move more slowly. In the time it took in 1989 for a court to decide what it took them just a few days to decide this time, Larry McAfee re-considered his life and chose to keep it.

In the year that followed, some reporters were able to talk at length with McAfee to discover that the reason he wanted to die -- the reason behind it all -- was because the state of Georgia refused to let him live anywhere other than a hospital or nursing home. The state would use its funds to pay for his care only in a "facility." Well, who'd want to live like that? Not Mcafee. Not Smith.

And not Smith's mother Shirley Egan. Let's not forget that this current right-to-die tale began with Shirley Egan not wanting to live in a nursing home.

Georgette Smith's "God, don't leave me this way" has been all over the news. It's the fear of all of us -- that we become disabled and be "left that way." But "don't leave me this way" was Shirley Egan's cry as well. News reports' use of words like "assisted living facility" just gussy up the fact: Egan was going to a nursing home and she dreaded it.

Progress. Now crips get the right to die much more quickly than in McAfee's time. Smith didn't get time to reconsider. She's dead. And the only thing our nation can think to do with cripples, still, is to put them in a facility or let them die.

That sounds crude. But it's the truth.

Crudely put, Smith was disabled by her mother. Mom didn't want to live in a nursing home, but Daughter wanted to get her gimpy mom out of the way. So Mom gives Daughter what-for, big-time, and now Daughter's facing the same fate: the nursing home. She doesn't like it any better than Mom did. Some heartless wags in the movement were calling it poetic justice. That was before Smith killed herself.

The trappings of the disabled life as our national institutions permit it: The whole family hated it. Smith's two daughters, young adults, both said they'd rather their mom die than "live like that."

But who's talking about the "live like that" part? Nobody. The "live like that" part is lost in the high drama of the judge, the competency test, the "Right to Die," the ACLU blathering on about "choice" in rhetoric they'd oppose were it coming from those supporting a cause adversely affected blacks, or women, or gays or just about anyone other than disabled people.


Lack of control. That's what living in a paralyzed body represents to us. Lack of control. Living at the will of others. Shut away. This is the terror of disability. We say it's that we can't move, but behind the "can't move" is this other stuff we don't talk about.

This other stuff, the trappings of disability, the way we allow our cripples to live. The stuff we don't talk about.

Mother and daughter. Scared to death of living the way we force our cripples to live. Preferring death to that life.

What about that life? Cases like Smith's, like McAfee's a decade earlier, call out for national examination of why we force people into nursing homes, why we shrug at the million-dollar costs paralyzed people incur as if they were inevitable, like rain; rather than the result of misguided and paternalistic national policies about disability and long-term care.

And hardly anybody in our nation, other than disability activists, are willing even now to take a hard look at that life and demand that changes be made

We're not talking the Christopher Reeve solution here. That solution will be the easy way out when it comes, for those for whom it will come, those whose diseases will be cured. But what about the millions who don't have the popular disease of the year? What about them? The ones who don't get cured?

That's why cure is not the answer we need to Smith's problem. If Reeve's cure were available, Smith would've been saved. But not Egan. For her, the nursing home would still have loomed. We don't deal with that, though. We talk about cure. It's easier.


In the year that followed McAfee's court fight and reconsideration of life, disability activists got Congress to pass the Americans with Disabilities Act. Now, ten years later, an ADA case -- a case very much like that which led McAfee to seek death (ironically, from McAfee's state, Georgia) -- is before the U.S. Supreme Court: Can states force cripples to live only in institutions in order to get their care paid for? Activists say the Americans with Disabilities Act protects people like McAfee now; that states have to let crips live in their own homes. That's what Smith would've been up against, had she decided to live.

Large numbers of us, as we age, will need assistance with things like dressing, bathing, using the bathroom. We'll face what Shirley Egan faced. Will we shoot our children for trying to put us away?. What's our choice?

"I'd rather die than go to a nursing home," we say in all seriousness. If nursing homes are that godawful, why aren't we as a nation seriously discussing how people can maintain control over their own lives after sustaining serious illness or injury, as disability rights activists have been urging for years? Activists say that's what the Americans with Disabilities Act is all about: disability rights: Yet why is the right to die the only right we ever understand when it comes to the thought of being disabled?

Related story.
More on the ADA Supreme Court cases.


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