There are two hot button political issues – abortion and assisted dying – that are, if you can believe it, even more polarizing and divisive within the disabled community than in non-disabled society. Depending on your viewpoint, it can feel like you are a member of the KKK at an NAACP convention. Today I want to talk about assisted dying. (
One camp couches their discourse in terms of palliative sedation and the right to die. They argue each individual should have ultimate autonomy over when their life ends. Their case draws upon the pain and suffering inherent in a slow death from a fatal condition that is unnecessary in light of modern medicine’s ability to provide “gentler” means.
At the moment, supporters of the right to die are focused on those given a terminal diagnosis with less than six months of life remaining. They speak of safeguards to prevent abuses, doctors seeking psychiatric input whenever they suspect a psychological condition might be influencing a patient’s decision, and educating the terminally ill about their options so they can make an informed choice.
And then there are those who refer to the issue as assisted suicide or murder. They are fully aware that “terminal diagnosis” is a nebulus term, that legislation cannot adequately safeguard against all abuses, and that what begins with someone who will die from cancer in two months will shift over time. With this reality in mind, many disabled people fear that the myths and misconceptions society has about disability will hold undue sway over life and death decisions either directly or in a more oblique way.
Many consider becoming disabled to be a fate worse than death. Their understanding of disability is based on exposure to societal beliefs as opposed to direct experience with the condition in question. Often all they can see is what disability limits, denies, and decrees for the future. Armed with this flawed picture, they decide about life and death. Those happily living with disabling conditions argue that any choice based on such inaccurate information should not be supported or encouraged by public policy. Essentially, it encourages people to opt for death when happiness is possible.
Healthcare professionals with their narrow, medical view of disability impact the situation when they provide information to their patients. As any disabled person can tell you, the medical world possesses a particularly harsh and limited view of our lives. They see us not as we live but as we are sick. Though it may be only a fraction of our lives, if that’s all they see then that’s all they know. This warped version of disability reality is passed on to those trying to assess future quality of life.
The politics of disability economics are rather grim. Funding to support independent living in the community, to help retrain people for jobs, to provide accessible transportation and housing, to enforce laws requiring equal access and accommodations, and to integrate disabled people into the community are limited and shrinking as the number of disabled people grows. The things that could improve the quality of a disabled life are not adequately provided. Furthermore, health insurance companies make decisions about what procedures to fund. From a business perspective, the death of an insured disabled person is cheaper than paying the medical bills over even a few months.
In other words, people being given “terminal” diagnosis rely upon inaccurate views of disability, advice given by health care professionals who only see the negatives of the condition, and a potential future shaped by governmental monetary restrictions and business models dictating their death is fiscally advantageous. With great justification, disabled people fear death will be chosen because any positive alternative is not known. The discourse is far more nuanced than I have expressed here, so for an in-depth look at this side of the debate, check out Bad Cripple’s blog.
I tend to stay out of this debate not because I do not have a strong opinion but because it’s not one embraced by either camp I’ve described above. However, while presenting my experiences as a disabled bisexual, I happened to touch upon the fact that many consider disability a fate worse than death. Stephen Drake of Not Dead Yet came across the resulting comments and wrote a blog entry. A local reporter then contacted me and penned her own article that did not adequately express my viewpoint. I have wanted to state my own viewpoint ever since.
I completely agree that end of life decisions have been are, and will be unduly influenced by societal beliefs about disability. For me, this debate is as personal as a loved one deciding to die based on misconceptions and misinformation. Disabled activists are justified in their fears and not catastrophizing or exaggerating.
I will always and forever support the right of each person to decide about their own life and death. Everyone should have the ability to choose their own future and how it unfolds. I have no right to force my perspective upon them. I believe with every fiber of my being that we all have the right to die in our own space and time. While I may not like the result, I will not ever dictate how another lives, loves, creates, feels, or dies.
The only way to impact such end of life decisions is to change how society perceives disability. It will have the added boon of effecting other arenas such as how one disabled individual is treated when they enter a public space, go to college, or try to date.