Dying a “Good” Death

Disability and the Assisted Suicide Debate

I underwent countless appointments, expensive testing, and was continually gaslit and neglected by medical professionals. I was told that mast cell activation disorder wasn’t real (it is very real). I lost twenty pounds in a month and I reacted to anything I consumed. I began to throw up stomach acid because I could consume so little. I moved back home with my parents. As my reactions got worse and doctors shrugged in confusion, I grew desperate. Starving to death and having daily allergic reactions to things like sunlight on my skin or warm shower water was torturous. I made an ultimatum with myself: if I could not secure care, I would take my life.

I began to consider what death would be like. I looked up assisted suicide programs across the world. In doing so, I came across countless stories – some in favor of medical euthanasia, others firmly against it. I found news articles, white papers, research articles, and personal stories about the benefits and harms of assisted suicide. I read stories of disabled people who felt compelled to choose death because the world framed them as burdens. I watched interviews detailing flawed ethics and issues of consent. I came to think very differently about death. (...)

Amongst many others, these experiences have shaped my relationship with death. In all of these cases, medical and welfare supports could have improved the experience of death for everyone involved – for those dying, for caregivers, and for extended family members. I don’t think an early death, in any of these cases, would have necessarily been more “humane” or “dignified” than those that occurred. While these experiences are deeply personal, I believe they are emblematic of broader concerns with assisted dying.

In my opinion, those protesting against assisted dying laws are not asking dying people to suffer. The issue is not as black and white as people believe it to be. Those of us protesting do not want people to be in needless pain, instead we want resources other than death to alleviate suffering while people are still alive. We ask that policies ensure that no one is coerced or forced into choosing assisted dying. Similarly, we demand that policies are solid and that there are no legal loopholes to them. While internet debates have been furious over the past few weeks, I think we all want the same thing: an experience of death that honors and values the individual’s life. We differ, though, in what that experience looks like. (...)

Despite its roots in the eugenics movement, today twelve countries around the world permit assisted suicide in certain localities and certain cases. Right to Die Societies around the world are likewise pushing for expanded access to these programs for people who are not deemed terminally ill, citing that the right to die is rooted in individual liberties and compassion as “it is not always possible to relieve suffering.” Those in favor of assisted dying believe that we can enact legislation to ensure that the right to die is not abused by the state and that it will not be used to forward eugenics.

People are clearly suffering, but many are suffering from a lack of meaningful supports. As assisted dying programs expand, a cultural resonance follows. This cultural framework implies that living with significant medical or care needs is burdensome and that you should choose death because palliative care poses challenges for loved ones. In a hyper-capitalist world where palliative care costs an exorbitant amount of money, insurance frequently denies claims for supports and loved ones often do not have the time to perform caregiving because they need every working hour to scrape by, assisted dying offers a financial reprieve that is important to many people. The fact that death alone offers financial relief, time relief, and potentially relief from emotional distress is heinous. Death appears to be cost efficient in a world where healthy nondisabled people are considered valuable while older, sick, and disabled people are financial liabilities.

Despite the ongoing and active resistance of disabled people, it seems that assisted dying is only growing at an international scale. Safeguards have been violated for decades and yet new legislation continues to pass. At the same time, welfare cuts and gaps in medical care grow exponentially. In my opinion, assisted dying offers a neat and clean excuse for governments to further cut services instead of interrogating their failures. The core question at the heart of this debate is not “do you believe people have the right to die without suffering” but rather “what is an acceptable amount of collateral for you to have a peaceful death?”

by Nicole Schroeder, Disability Visibility Project |  Read more:

Image: uncredited

[ed. Point taken, but I'm still a strong advocate for right-to-die options. We routinely use euthanasia for suffering pets, but not suffering people. I know many consider this an unsophisticated and/or un-nuanced view of the issue, but I also believe it should be an individual's inherent 'right' to decide their own fate under similar circumstances. We're taught from birth and throughout our lives to exert self-control, then that control is taken away at precisely the time when it might matter the most. Unfortunately, the process of acquiring multiple approvals, and the various caveats involved, are so byzantine as to be nearly unworkable. Yet, for many people who do finally gain approval there are also a significant number that never follow through. All that matters is that they have a choice - an option in case their quality of life and/or care becomes untenable. So yes, a better system of palliative care should be a given, but when there isn't (and there won't be soon) there should be an additional option. I know personally that I'm way more concerned about the process of dying, than dying itself. It shouldn't have to be that way.]