Death Do Us Part

The confrontation was polite–even respectful–but it was undeniably a clash of adversaries.

Paul Longmore, an associate professor at San Francisco State University, is one of the disability community’s most outspoken opponents of legalized assisted suicide. Andrew Batavia of Miami Beach, Fla., is a well-known attorney and health and disability policy expert who favors legalization.

Longmore had polio and uses a ventilator; Batavia is a C2-3 quadriplegic from a spinal cord injury. Both frame the assisted suicide issue in terms of disability rights; both are highly articulate spokesmen.

In a February 3, 1997, conference call, Longmore and Batavia debated physician-assisted suicide for New Mobility readers. The occasion was their first meeting, and was both improbable and inevitable. Their views are worlds apart, yet the vital importance of the issue demands that adversaries talk. The discussion began with a question: Can a request by a disabled person for a physician’s assistance in dying be seen as a rational and uncoerced choice?

Paul Longmore: Historically, when people with disabilities have wanted a physician’s help in ending their lives, courts have automatically assumed that first, they were acting in response to their disability alone and second, it was a reasonable thing to want to die. Whereas, for somebody who is not disabled, the automatic response is to try to help the person and solve the problems. This happens to people with disabilities even when it’s made clear that there are all sorts of societal factors that have brought the person to this point.

Andrew Batavia: I understand that people with disabilities have always been devalued and we need to rectify that. Certainly, we need to educate the public and the medical community. But I feel that the individual should be able to make the decision. In the context of the Supreme Court case being considered now, we’re talking about the right of competent, terminally ill individuals to end their lives. These people are suffering, they’re in the last few months of their lives, and there’s no reason that the state should interfere. Their decisions have to be respected as rational.

For Whom? By Whom?

AB: When it comes to terminally ill individuals, I strongly support their right to physician assistance in dying. The state’s interest in denying this right is very, very small and the individual’s interest in ending suffering is very great. I have a greater concern once you get beyond the terminal condition, for the reasons Paul states, but ultimately I would support the right of states to give all individuals–including people with disabilities–that right.

PL: The right to end their lives, or the right to end their lives with a physician’s help? Physician assistance is the key difference here.

AB: I would certainly support their right to end their lives. But once you start bringing in the apparatus of the medical community, I have some reservations about coercion. I do think state law could have protections built into it. If, for example, non-terminal people with disabilities were required to make the decision to die several times over an extended period of time to several different individuals, I would support that. But in terms of constitutionalizing the right–and thereby preventing states from denying it–I would limit it to competent, terminally ill individuals.

PL: The safeguards being proposed seem awfully flimsy and inadequate to me. I appreciate the fact that you want to limit assisted suicide to competent, terminally ill people, but so do many other proponents of legalization. The first problem is that there are many people in the right-to-die movement–including the Hemlock Society–who have made it very clear that they want to extend assisted suicide to people with disabilities. Second, there are already court cases in which judges have ruled that if a person with a disability makes this request, it’s not suicide. It’s refusal of medical treatment. That’s what happened in the Larry McAfee case in Georgia; that’s what happened in the David Rivlin case in Michigan. These guys had been woefully oppressed by the system and they eventually found their lives unendurable-because of the system, not because of their disabilities.

AB: They wanted to terminate the use of their respirators–which is suicide for all practical purposes. And they should have the right to do that.

PL: But I find it ironic that, on the one hand, proponents of legalization are arguing that doctors can’t be trusted because they too often want to compel people to live. The experience of people with disabilities is directly opposite to that. And then they want doctors to both determine eligibility and carry it out–the same doctors who are currently under tremendous pressure from the managed care revolution to ration health care to people who are regarded as costly.

AB: The experience of people with disabilities with their physicians has been mixed. And the impetus for assisted dying would come from the individual, not the doctor.

PL: In theory. But you know there would be all sorts of social pressures. The choice that’s going to be given to people with disabilities is this: Well, you can be forced into a nursing home or you can choose to die. Which is it going to be? That’s a choice? One of the people that Jack Kevorkian abetted in committing suicide was a man named Wally Spolar from Texas. He wanted to die because he was afraid he was going to end up in a nursing home. He allegedly made a free choice–he chose to die. But what was he trying to avoid? He was trying to avoid a nursing home.

AB: What he was saying, essentially, was, “I demand that this state meet my needs. But if that is not going to happen, this is my reality. In this reality, I choose–as an autonomous individual–not to keep going on.”

PL: The word “autonomous” here is absolutely meaningless. He didn’t choose as an autonomous individual; he opted to die as an oppressed individual.

AB: He was a competent human being and that was his choice. It was his reality. We have to improve the system. That we agree on. But he can make a rational choice that he doesn’t want to keep going under these circumstances, and I respect that.

PL: Drew, I’m puzzled by one thing. You started out saying that the issue before the court is physician-assisted suicide for competent, terminally ill people, but what you’re now talking about is that same right for people with disabilities as well. Is that your position?

AB: With respect to a constitutional right to physician assistance, I would probably limit it to terminally ill individuals. I do believe that people with disabilities who are not terminally ill should also have that right in states that pass appropriate legislation with adequate safeguards.

Societal Oppression

PL: Part of the disagreement we have is our analysis of the general situation and condition of people with disabilities. I think that we live in a society that is deeply prejudiced against us, and that we are an oppressed minority.

AB: I have major problems with this notion of societal oppression and how that somehow precludes an individual from making a rational choice. The fact is that there are a multitude of ways in which our society doesn’t fully meet the needs of people with disabilities, but I find it extremely dangerous to say that, for that reason, disabled people shouldn’t be able to make fundamental choices about their lives. If a state tells me I can’t end my life if I’m terminally ill, the state is oppressing me.

PL: It’s one thing to make fundamental choices; it’s another thing to have the society that’s oppressing us set up mechanisms to facilitate our suicides. Any society that would guarantee assistance in committing suicide by an oppressed person is simply indicating just how oppressive and hypocritical it is.

AB: There are some fascists out there, but overall, I don’t think that’s accurate at all. I believe that we’ll end up with a better health care system and a more responsible society if people are given their rights to autonomy over their lives.

PL: I’m not worried about the fascists, I’m worried about a health care system that is profit-driven and is trying to ration health care. And I think it’s naive to think that a health care system that is becoming more profit-driven and more unjust is somehow going to become more fair and equitable because the people the system is trying to deny care to are granted the right to end their lives more quickly.

AB: People with terminal illnesses and people with disabilities, once they have this right, are going to shout out loud that this system stinks! And I think the press will pick up on that and ultimately there will be strong political pressures to improve the system.

PL: We’ve been shouting for a long time, and we’ve been ignored.

AB: The disability rights movement is not about complaining about oppression. It’s about empowering individuals to do what they want to do. You’re right that our society is far from perfect, you’re right that we need to improve programs and policies; but if you cry about oppression all the time, any respect that we’ve won over the years is going to dissipate. It’s a damn shame. I believe that the protest in front of the Supreme Court set the disability rights movement back 10 years, it was so pathetic. People were screaming, “Please don’t kill me, please don’t kill me.”

PL: No, they weren’t saying, “Please don’t kill me.” They were saying, “We’re going to fight against people who are so bigoted they think that we’re better off dead.”

AB: I was there on those steps, and I can assure you the message was not empowering. I refuse to consider myself oppressed and I do believe that I can make autonomous choices. And if I were terminally ill, I would be deeply offended if the state were to tell me that I could not, with the assistance of my physician, end my life. Don’t take away my rights by virtue of your notion of oppression.

Personal Decisions

AB: When I was paralyzed 23 years ago, it gave me a lot of peace of mind knowing that if things got bad enough, if I didn’t want to keep on living, then I could make that decision. Let me ask you, Paul. If you were terminally ill, wouldn’t you want to be able to make this choice for yourself?

PL: I’m not sure what I’d do if I were terminally ill. I know that my experience as a person with a disability would make me very concerned that doctors and others would want to hurry me into death as quickly as possible. And it might be very hard for me to get appropriate health care and pain management and palliative care and psychological support services and insurance to cover all that.

AB: That’s not my experience as a person with a disability, and it doesn’t address my question. Ultimately, wouldn’t you want to be able to make the choice?

PL: What I want is for the state to guarantee me adequate health care in all its forms. What kind of a society would give me the right to die as the first right it guarantees, when it hasn’t been willing to guarantee these other rights? Could I really trust a society like that to fairly and justly administer a right to physician-assisted suicide? I don’t think so.

As abbreviated here, this debate represents a deep ethical and philosophical split within the disability community. If even these two advocates–who have clearly demonstrated their commitment to disability rights for years–can have such contrary perceptions of the disability experience and reach such different conclusions, don’t we all need to carefully examine our own opinions? Does the disability community have a consistent party line on assisted suicide? Should it? Are there solutions that would protect the rights of people on both sides? This issue shrugs off easy, packaged answers, and demands that light be shed.

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