Rejecting rights: The disability critique of physician assisted suicide

• Pages: 77-112
• Date: 22 February 2011
• Published date: 22 February 2011
• DOI: https://doi.org/10.1108/S1059-4337(2011)0000054007
• Author: Katharina Heyer

REJECTING RIGHTS: THE

DISABILITY CRITIQUE OF

PHYSICIAN ASSISTED SUICIDE

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Katharina Heyer

ABSTRACT

This chapter examines disability rights movement’s rejection of a right to

physician-assisted suicide (PAS). Supporters of PAS frame the right to

enlist a physician’s help in determining the nature and timing of one’s

death as a fundamental liberty interest and as a right to privacy. The

disability opposition counters this with disparate impact and slippery

slope arguments and stories of disability pride as a rhetorical rejection of

a right it deems dangerous and discriminatory. In examining this clash of

rights talk, this chapter analyzes the legal and political consequences

of anti-rights rhetoric by a movement that is grounded in notions of

autonomy and self-determination.

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This chapter is dedicated to the memory of Cristina Maria Cortese (1985–2008).

Special Issue: Social Movements/Legal Possibilities

Studies in Law, Politics, and Society, Volume 54, 77–112

Copyright r2011 by Emerald Group Publishing Limited

All rights of reproduction in any form reserved

ISSN: 1059-4337/doi:10.1108/S1059-4337(2011)0000054007

77

INTRODUCTION: BETTER DEAD THAN DISABLED?

I began to notice that when assisted suicide advocates really wanted to scare

their audience, they did not use unremitting pain to do it. They use

disability. The need for help to go to the toilet was the big stick. Wouldn’t

you rather die than have someone else wipe your butt? It never seemed to

cross those advocates’ mind that thousands of people in the United States

get help to wipe their butts every day. Many of them are my friends. The

blatant disdain that the assisted suicide advocates showed for people with

real disabilities disgusted me. I began to see the smug slogan, ‘‘Death with

Dignity’’ in a new light: it hid the assumption that dignity was forever

out of reach of people who were disabled: ‘‘Better Dead than Disabled’’

(Amundson & Taira, 2005).

Philosopher and disability rights activist Ron Amundson issues a

formidable challenge to supporters of physician-assisted suicide (henceforth

PAS).

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Advocates for legalization of PAS frame the right to determine the

nature and timing of one’s death as a progressive realization and extension

of a right to autonomy and self determination, both of which are considered

cornerstones in the contemporary disability rights movement. Both move-

ments share a concern over paternalism in the medical care of patients

and emphasize the importance of autonomy in decision making. And yet,

the disability rights community has rejected this claim to a ‘‘right’’ to die.

Moreover, as we see in Amundson’s caustic critique, disability activists

criticize the rhetorical strategies of PAS activists as fundamentally ignorant

if not contemptuous of disability identity. They interpret the rhetorical

strategies arguing for a right to assisted dying as evidence of pervasive fear

of the disabled and non-functioning body.

Amundson elaborates his opposition to PAS on the basis of his

experiences as a person with a disability. His essay is part of a special

issue of the Journal of Disability Policy Studies that focused on the disability

opposition to legalizing PAS. With his former student Gayle Taira,

Amundson explains his frustration with the use of disability as a rhetorical

tool to garner support for PAS as public policy. Disabling conditions that

require personal assistance, such as the infamous ‘‘butt wiping’’ that is

described in almost every article in the journal, are commonly used as

horror stories that would convince anybody that PAS is the proper, if not

inevitable solution to terminal illness. As Amundson and others explain in

this journal, living with disabilities that require personal assistance in the

most private aspects of everyday life is taken as a matter of course by

many people with disabilities and does not suggest a reduced quality of life.

KATHARINA HEYER78

Only those without disabilities would find these conditions degrading or even horrifying

enough to consider them ground for suicide. In the end, Amundson and Taira conclude,

it is a person’s personal experience with disability, rather than listening to well-crafted

arguments, that will determine beliefs about PAS. They write, ‘‘this special issue of the

Journal of Disability Policy Studies is premised on the notion that disability-rights

opponents of assisted suicide can find common ground with conscientious advocates of

the policy. We (the authors) are not entirely convinced that this is true’’ (2005, p. 53).

The disability rejection of a right to PAS has not been well theorized outside

of the disability studies literature. Clearly, the rejection of a right holds

powerful implications both for disability activism (Bickenbach, 1998) and for

our understanding of the role of rights in social movements more generally.

Scholars within disability studies need to investigate the reasons for the

disability rights movement’s rejection of that right to autonomy and self-

determination and contemplate the implications for the way disability

activism posits itself vis-a

`-vis other progressive movements. Sociolegal

scholarship, in turn, can examine the disability rejection of PAS as a

productive site for examining the role of rights in social movements.

The sociolegal literature examining the role of rights (McCann, 1994) and

legal mobilization (Barclay, 2009a; Goldberg-Hiller, 2002; Marshall, 2005a)

has provided a wealth of insights to the way that rights matter for the

politics of social movements. Especially in the politics of identity-based

social movements, much attention has been paid to the work of expanding

the role of rights in the lives of those denied of legal equality. As such a

movement, the disability rights movement has worked to secure the rights

of people with disabilities in various contexts where their legal status had

denied them equal opportunities to participate in education, employment,

housing, voting, and public transportation (Barnartt, 2001; Colker, 2005;

Fleischer, 2001). A central organizing principle of disability activism has

been the emphasis on autonomy, choice, and independence, as well as a

critique of a healthcare system that promotes patients’ rights, choices, and

empowerment vis-a

`-vis their healthcare providers. Self-determination is

another foundational principle in disability activism: ‘‘nothing about us

without us’’ was the rallying cry of international disability activism at its

very foundation at the 1981 Singapore meeting (Driedger, 1989; Charlton,

2000). Similarly, Ed Roberts, now considered the father of the U.S.

disability rights movement, gave a speech at a 1983 rally entitled, ‘‘when

others speak for you, you lose’’ that came to define a movement and

catapulted Roberts into the national spotlight (Roberts, 1983).

Viewed from within that emphasis on advocacy, self-determination, and

rights expansion, the disability rejection of a right that shares a common

Rejecting Rights 79