Edge-centric

On Oct. 5, the Supreme Court heard arguments in the case Gonzales v. Oregon, a case brought by the Bush administration that seeks to invalidate Oregon's first-in-the-nation "Death with Dignity" Law. The Administration argues that physician-assisted suicide violates the federal Controlled Substances Act on grounds that suicide is not a "legitimate medical purpose."

The case has split the disability studies movement, just as the right to die, like the Terri Schiavo debacle, continues to split the disability rights movement.

Arguments have raged fast and furious on the academic listservs over the past month.

Today begins the first of a series of blog entries I'll return to in coming months about the right to die and the disability rights movement.

At the end of September I interviewed Diane Coleman, head of Not Dead Yet, the activist disability rights group that has spearheaded disability rights opposition to right-to-die laws. Not Dead Yet filed a friend-of-the-court brief siding with the Bush Administration. Although a bunch of other national disability rights groups signed onto the brief, one group who had signed on decided to remove itself from the brief. That group was the Society for Disability Studies, and although the reasons they removed themselves are complex, one of the reasons was Lennard Davis.

Davis is a proponent of physician-assisted suicide, and he's a biggie in disability studies circles. A Professor of English at the University of Illinois at Chicago, he's also Professor of Disability and Human Development in the School of Applied Health Sciences and a Professor of Medical Education in the Medical School

I don't think it's overstating things to say that Lennard Davis is personally horrified that the disability rights movement appears to be aligned in the public's mind with, as he says, the "Right to Life." Those reasons, it seems to me when I talked to him, are based as much in a gut reaction against "The Right" as anything -- although he has his arguments lined up as well. He firmly believes that physician assisted suicide -- as espoused in the Oregon law -- is not the same as the "euthanasia" that many disability rights activists fear. And he thinks there's insufficient documentation to support the fears that make groups like Not Dead Yet align with the Bushites on this one.

Shortly after I'd posted my interviews with Diane Coleman (here and here), Lenny Davis suggested I interview him for another side of things. Fair enough, I said.

What follows is, I think, a fairly faithful rendition of the things he told me. I had him check the quotes I was going to use. I was interested in interviewing him partly because Lenny Davis is one of the few disability studies scholars who has begun to use the media -- in fact it was his commentary on NPR -- saying that "disability activists and scholars have come to see physician-assisted suicide as an assault on the disabled. The fundamental error they've made is that they have equated disability with dying" -- that got lots of folks in the disability movement in a tizzy. And it didn't help that he also talked to the folks at Inside Higher Ed and expounded even more about what those editors chose to call a "rift" in disability studies circles over the issue.

I was also interested in interviewing him because I didn't believe that a truly rational, disability-rights-based case could be made for supporting physician-assisted suicide, and I wanted to see if his arguments could convince me.

"I'm a lifelong Leftist," Davis told me. "I've happily described myself as a Marxist in the past -- that's my orientation; from a working-class family, first-generation educated -- a family of Deaf people.

"The transition I made from Leftist academic to disability studies scholar has felt good in the same way.

"I don't want to be associated with something that feels so regressive about all the things that are part of the Leftist tradition," he went on, moving now into the reasons he was upset disability rights activists siding with the Administration against Oregon. "It makes me feel bad. I don't want disability studies to be like this."

It seemed to me that he was extremely concerned about the public appearance of what the disability rights leadership appeared to have done. "I don't think that being in disability studies means you have to be for the same kinds of things as [the nation's] rightwing agenda," he went on. But he questioned the view of some in the movement that temporary alliances with the Right made sense in this case -- something he characterized as "I don't agree with The Right, but I'm just temporarily making an alliance."

That simply didn't work for Davis. "Substitute 'Nazi' for 'Right,'" as he put it.

"Not Dead Yet is willing to do whatever it takes to stop any physician-assisted suicide law in the U.S.," Davis continued. "I think Stephen Drake and Diane Coleman [the main players in Not Dead Yet] are very aware of Left-Right politics, and they feel in their minds that they have made a clear distinction between the Right to Life and the Not Dead Yet position. But the rest of the world is not going to notice the distinction.

The producer at National Public Radio who worked with Davis on his commentary "thinks that Not Dead Yet is aligned with Right to Life. It's like trying to make the distinction between the Anarchists and the Communists in the Spanish Civil War. Or like CORE and SNCC during the civil-rights days: who's gonna know the distinction?"

It was painful for me to hear him say this -- for it was a feeling I'd often had myself. No matter how much effort Not Dead Yet and others put into distinguishing the disability rights position from that of The Right, the distinction simply got lost in the public's mind, it seemed to me.

I had, however, felt that in the coverage of the Gonzales v. Oregon case, which had occured at the time of the oral arguments before the Court on Oct. 5, there had finally begun to be some glimmer in the news about the disability rights position. Not Dead Yet had more interviews. The media seemed to sense that the players in the case were Not Dead Yet and Compassion and Choice -- rather than simply the right-to-die group and some Christian Right to Life group or other. But that was my take on it. And I also knew that part of the reason reporters had sought out Not Dead Yet this time was because they were appearing to take the Administration's position. A curiously unexpected move is always of interest to the media.

Sigh.

Davis went on: "Let us say that everyone is aware that disability rights activists are progressives. Let's say the public 'got that.' The problem is still," he said, "that the action of Not Dead Yet supports the action taken by [DOJ Sec.] Gonzales, where a single federal official has countermanded a law passed by the people of Oregon."

The position Not Dead Yet took, in other words, supports a right-wing Adminstration, who is taking its action for right-wing reasons. At least that's how I took Davis to mean it.

"There's a short-term / long-term problem with this alignment: The Not Dead Yet position is that 'it's OK; we can make alliances with the Right.' But in fact the agenda of the Right is to erode the right to privacy.

"Every time you encourage one form -- any form -- of judicial action on the right to privacy, you're weakening it, and we have to be very careful when we choose short-term alliances and strategies. One of the key issues of the right to privacy for people with disabilities is that you don't want your medical records available to employers, insurance companies and so on."

"Most disability activists support a liberal agenda; support a right to choice," Davis said. And it seemed to me that he was frustrated -- more than frustrated, I guess, angry. People who took the position that Not Dead Yet had taken on Gonzales v. Oregon, he said, had to recognize "which laws actually will end up getting strengthened: you are supporting a conservative impulse on the part of Gonzales to overturn a liberal agenda by fiat. You are feeding the beast.

"The very people you are giving strength and support to -- you are giving them strength to overturn Roe v. Wade -- which is not about abortion, but the right to privacy."

So. It seemed to me that Davis saw the fight against physician-assisted suicide as part of a much broader rightwing agenda to weaken or destroy the right to privacy -- and that any position taken in support of Gonzales over Oregon was playing right into that agenda.

"The downside to taking the strong stance that Not Dead Yet takes is that it associates people with disabilities with a rightwing agenda. Are they going to be marching again tomorrow with people against gay marriage? Against abortion? Against the right to privacy?"

Something else concerned him, he said: Assuming other laws get passed -- and other laws will get passed, he believed -- the problem with simply being "against" physician-assisted suicide laws was that "the people with disabilities won't be involved in making the laws, because they're against them."

This got back to the age-old question: Do you refuse to participate in compromise, or do you take a tactical position that trying to make something you hate into something you can tolerate is better than nothing?

But, I thought, the people who saw things differently than Lennard Davis would say that this was entirely the wrong question.

It was clear to me that Davis, like many liberals and lefties, personally supported the idea of a "right to die."

"I have a total terror of death," he told me. "The last thing I'd choose is assisted suicide. My advance directive says, 'keep in the feeding tube!' I've been this way since childhood. But I know that if -- when -- that time comes, I know that, emotionally, it would really help me if I could have that pill in my pocket -- just knowing that it's there would help me get through. I probably wouldn't even take it, but if the pain got bad... I've seen people die peacefully, but we all know that's not always true, and I'd like to know that in a reasonable civil society that this option was available, rather than having my friend having to put a plastic bag over my head or shoot me. And I think most people feel that."

There were reasons for having assisted suicide legalized, he said. "One reason is to make you feel part of an ethical and civic society. Killing yourself with drugs is what assisted suicide means. And the only legal way to get drugs is through doctors, so doctors have to be involved.

"The other ways of committing suicide are horrible."

He describes to me a friend who witnessed his father's self-inflicted death, and the memory of that stays with him. "What a traumatic thing! If you crash your car, if you put a plastic bag over your head, you can't really be with your friends and depart -- the only way you can do that is if you have a drug that will let you do that. Yes, you can still get the drug illegally, but then you or your friends are doing something illegal.

"It's bad enough to help somebody end their life without having the guilt of doing something illegal. And the other thing that nobody talks about is that there's no insurance benefit in the case of suicide. The Oregon law provides for having the insurance go to the heirs, because nobody is doing anything illegal. In other states they could be arrested. But in Oregon the surviving spouse can get the insurance money."

One could argue that Lennard Davis was simply espousing the liberal party line on assisted suicide. But his "rift" with other disability studies scholars has other components. It seems he simply doesn't believe the arguments that the disability activists opposed to assisted suicide present. And the basis of his skepticism, it seemed to me, was that he feels they have provided insufficient (or even inaccurate) documentation for the position they hold.

To scholars, bad documentation is a big deal.

For him to change his mind on the Oregon law, he told me, "you'd have to be able to prove and document that this law is definitely killing people with disabilities. Then, yeah, I'd change my opinion.

"But what I feel is that the arguments being made on the side of those against physician-assisted suicide are coming out of fear. I can't say that the fear is invalid -- the emotion is valid -- but those making it are making it on the basis of fear rather than on the basis of documentation. How much of it is verifiable, and how much of it is based on the 'oh, I fear it will...'?

"The documentation I've seen doesn't tell us a lot. It says that there are problems with the enforcement and reporting end of the Oregon law. I'd agree with that. But there is absolutely no clear and overwhelming documentation that people with disabilities are being killed because of the law."

"I've tried to go through the documentation on the Not Dead Yet website with an open mind. I've tried to check the sources. And you know and I know that you can cite an article out of context. But if you look at the articles that are out there, the picture is not clear" -- not in the way that Not Dead Yet members suggest it is, he said.

Lacking convincing documentation, he said, he felt that the damage was as great to the disability rights movement by their stance on the topic as was the danger of people with disabilities actually being killed as a result of right-to-die laws. Because he just didn't see that happening, he said.

One of the points made by disability rights activists opposed to physician-assisted suicide is that there's no way to distinguish between "terminally ill" people and people with disabilities -- or, more precisely, that no definition works to prevent people with disabilities from being encouraged to kill themselves. "The law won't stop at terminally ill people," is the way this is most often put.

But Davis doesn't buy that argument.

"It's a red herring," he said. "The Oregon law is for dying people. The timeline is not important. It's a quibble; an obfuscation. The law is for people who are about to die."

It's Davis's belief those in disability studies who oppose physician-assisted suicide had their consciousness of the issue formed in the 1980s around some very well-publicized "right to die" cases that involved severely disabled people -- Elizabeth Bouvia was one. "Their foundational consciousness was formed around this very basic fight -- that euthanasia will in some cases lead to disabled people wanting to kill themselves or wanting to be killed But those people with disabilities had no supports, no accommodations, no independent living."

Because of that history, he says, disability rights opponents of Oregon's law say "it's clear to us that this is tied up with society's attitudes toward people with disabilities [and] we never want that to happen again."

"It's hard for people to say, 'wait a minute: Assisted suicide is actually different from this.'"

The Oregon law, he stresses, is about "people with less than 6 months to live.

"I think it's important for people to know what the law says: that you have to make a request [for lethal medication] in writing to a doctor, and have the request witnessed by two people, one of whom can't benefit from your death. Then two doctors have to OK it. You have to wait 15 days, then apply again. The doctor then has to screen you for depression and to treat you if in fact you do have depression. Then the doctor has to write a prescription and send it to a pharmacy that's not part of the hospital [where the doctor practices]. Then somebody else has to go and get the prescription.

"The doctor is no longer in the picture.

"You can do with the drug whatever you want. People think 'physician-assisted' means the doctor is giving you the drug -- administering it to you right there. In fact, the doctor under the law cannot administer the drug."

He comes back to stress once again that "I am only for assisted suicide for people diagnosed with a certain amount of time to live -- 6, 9, 12 months -- whatever. Just dying people."

"The fear is that these laws are are going to get rid of people with disabilities -- the most fragile, the most helpless -- a eugenics argument. But if you look at who's choosing assisted suicide, it turns out to be not that group of people..

"So, assuming the law kind of works, my position is: what's the best position for people with disabilities to take? To oppose the law at all costs? Or isn't it wiser to work to build in better safeguards? I know the argument is that you can't do that. But even if the Supreme Court rules against the Oregon law, there will be other laws. It would be best to make the law have safeguards, and work so that the people who become disabled will have some way to deal with their fears of being disabled."

"Assuming the law kind of works, isn't it wiser to work to build in safeguards?" That's what sticks in my mind as I hang up the phone from my talk with Lenny Davis. And, "If the Supreme Court rules against the Oregon law, there will be other laws...."

He's right about that one, for sure. We are just starting our national dance with the right to die.

I did not check Lennard Davis's description of what the Oregon law says against the law itself. I took him at his word. In that sense I am as bad as those he criticizes for not checking facts, not being firm about documentation. But this interview isn't the end of things for me. I've been trolling around and heard other folks; I also have my own thoughts. But rather than exhaust you all at once, I'll exhaust you in little pieces: I'm going to keep returning to this issue. I hope I'll get down most of what I want to say before the Supreme Court rules on Gonzales v. Oregon. That should be in early 2006, say court-watchers. Of course the Supremes could rule any day.

On the other hand, what they rule is not going to make this issue go away. Physician-assisted suicide promises to become as heated and unresolvable a debate in this nation as abortion. Maybe moreso, as our nation ages.

Today, it seems rather simple, when I listen to Professor Davis: disability rights opponents are sincere but wrong about the Oregon law.

But next I'll be asking: what is it that they are wrong about? Are they simply afraid, with nothing more than wisps to base those fears on?