The ACLU of Colorado fully supports Prop. 106, but encourages all voters to carefully consider the concerns of the disability community.
I have been a staff attorney at the ACLU of Colorado for over six years and have wanted this job since I was a teenager. The ACLU – and its unending fight to protect civil liberties – is in my blood. Until just a few years ago, I did not question the basic premise, long supported by the ACLU, that terminally ill individuals have a constitutional and moral right to physician-assisted aid in dying. In the last few years, however, as I have built closer ties with the disability community, that premise has been shaken for me. I do not know now whether I can support the Aid In Dying ballot initiative.
Back when I first heard about the “right to die,” the movement labeled its cause “death with dignity.” That made so much sense to me. I could not imagine my extremely proud and capable parents or grandparents having to endure the indignity of losing their autonomy – their ability to care for themselves, to dress themselves, to toilet and bathe alone. Surely, I thought, they should be allowed assistance in ending their lives instead.
Now, years later, it has become plain to me that this fear of loss of autonomy that was, at least in part, driving the “death with dignity” movement, was bound tightly with a deep misunderstanding of and prejudice toward disability, even within progressive civil libertarian circles. If asked a decade ago whether I would rather live as a quadriplegic or die, I honestly might have said I’d rather die than lose my autonomy and my ability to do many of the outdoor activities I love. Years later, dozens of conversations later, and many relationships later, I no longer feel that way.
As it turns out, there are many, many people with significant disabilities who need assistance dressing, toileting and bathing, who cannot easily do the outdoor activities I love, and yet who lead extremely fulfilling lives and make meaningful contributions to the world. That these individuals cannot function without assistance does not in any way diminish their dignity. I know this because I have the privilege of knowing and working closely with many people who have significant disabilities. And the research supports my observations – Surveys of people with disabilities indicate that most rate the quality of their lives as ‘good to excellent.’
I now believe whole-heartedly that if I someday come to have a significant disability, I would want to continue to live and contribute, and that I would eventually lead a happy life. But I only came to this belief because I have had the very lucky opportunity to break through the gulf between able-bodied people and those living with disabilities. Most of my progressive friends are not there yet. The fear of disability, and the sense that death is preferable to it, is deeply rooted in our culture and often overlooked even by well-meaning civil libertarians who are able-bodied. It is my belief that this fear continues to drive some of the support for physician assisted aid in dying.
The wish to avoid a painful death is understandable. The disability community and other civil rights advocates are wholly aligned in their support of the right to complete palliative care and a painless death, to include palliative sedation if necessary. Advocates cite avoidance of a painful death as strong support for the ballot initiative. Yet, we know that in Oregon – where physician assisted aid in dying has been in place for nearly two decades –the top five reasons people stated for wanting life-ending medication instead reflected a desire to avoid living in a manner that people with disabilities live with every day: 1) loss of autonomy, 2) inability to engage in previously enjoyable activities, 3) loss of dignity, 4) loss of control of bodily functions, and 5) feeling of being a burden to others.
In a world in which the general public does not have a pervasive misunderstanding and fear of disability, there would be no question that I would vote yes on this initiative. But we don’t live in that world. We live in one in which disability is often viewed as a tragedy worse than death, and I fear that passage of this initiative inevitably gives further credence to that fable. I recognize that the ballot drafters have taken great pains to include many safeguards aimed at protecting against coercion of people with disabilities to die. It will be a hard decision for me this November.
Resources:
ACLU of Colorado Supports Aid in Dying
Gill, Carol, Health Professionals, Disability, and Assisted Suicide: An Examination of Relevant Empirical Evidence and Reply to Batavia, Psychology, Public Policy, and Law, June 2000 (citing multiple studies).
https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year18.pdf