At first glance, as a parent of someone who has Down syndrome and is almost 29-years-old, assisted suicide seems far from my radar – at least as a topic that pertains to my own life. I could imagine the questioned looks as I shared the announcement about the impending Twitter chat with other Ds moms. It didn’t take long before my mind was full of questions about how abelist views regarding end of life decisions may have an impact on one of the topics I’ve been most concerned about recently – the racial health disparities that exist within the Ds community and how we, as parents, can approach the idea of research into why our loved ones are living half as long as those who are Caucasian.
As a student of disability studies I’m always looking to learn about what is going on in the wider disability community. Tonight’s Twitter chat caught my attention. The hashtag was #AssistedAbleism –
The Disability Visibility Project, in partnership with Disability Rights Education and Defense Fund (DREDF), will be hosting a Twitter chat on Sunday, December 6, 5 pm Eastern/ 2 pm Pacific, “How Ableism Is – or Isn’t – Skewing ‘Choice’ on Bioethics & End-of-Life Debates.”
At first, I thought the discussion would have little to do with my own specific community, but I was eager to watch and learn. I was surprised by how quickly and deeply I connected to the conversation.
My first link occurred when a participant brought up bioethicist Adreinne Asch.
— Andrew Imparato (@AndyAUCD) December 6, 2015
I had studied some of her work in graduate school and knew of her position on prenatal testing.
First question to self:
Does the fact that some of society sees nothing wrong with selective abortions because of Down syndrome influence or reflect the overall perception of what it’s like to live with Down syndrome?
Which led to a second thought:
Does that same type of philosophy/logic apply to assisted suicide or withholding treatment of older adults who have Down syndrome? Possibly those who have Down syndrome and Alzheimer’s Disease? Does that impact their longevity?
And finally, another tweet set my curiosity afire:
— Alice Wong (@DisVisibility) December 6, 2015
So, let’s step back a minute and look at the real reason for the chat. How views of disability, held by non-disabled society members, impact discussions about end of life choices.
And a new flood of questions:
How is it different for people who are wealthy and highly-educated vs those who are poor or lack access to care and support? Do physicians play a role in the decisions families make? What about insurance (Medicaid) coverage?
A link provided during the chat provided some answers.
It is legal in every U.S. state for an individual to create an advance directive that requires the withdrawal of treatment under any conditions the person wishes and for a patient to refuse any treatment or to require any treatment to be withdrawn.
Fear, bias, and prejudice against disability play a significant role in assisted suicide. Who ends up using assisted suicide? Supporters advocate its legalization by suggesting that it is needed for unrelievable pain and discomfort at the end of life. But the overwhelming majority of the people in Oregon who have reportedly used that state’s assisted suicide law wanted to die not because of pain, but for reasons associated with disability, including the loss of autonomy (89.9 percent), the loss of the ability to engage in activities that make life enjoyable (87.4 percent), the loss of dignity (83.8 percent), and the loss of control of bodily functions (58.7 percent). Furthermore, in the Netherlands, more than half the physicians surveyed say the main reason given by patients for seeking death is “loss of dignity.”
Many people, including physicians, feel that disability is a fate worse than death.
William Peace, tells a terrifying story in Comfort Care as Denial of Personhood. His doctor suggested he forego lifesaving treatment for an infected wound. Instead, he offered to make him comfortable and free from pain as he slowly died.
“I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a life-time in bed. I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live.”
There is also an understanding within society, and even within the broader disability community, that even the “worst” physical disabilities are preferable to mental or intellectual ones – the hierarchy of disabilities. If physical disabilities are or can evolve into a state where death is preferable, at what point do doctors begin to advise parents to allow their intellectually disabled child die out of “concern and love.”
As a parent of an adult with Down syndrome I’ve seen the slow change in attitudes toward my own son, and had it loudly reinforced on social media. Young children with Down syndrome are seen as cute and friendly (a stereotype in its own right) but adults are feared and ignored. The only exception to this happens in the case of the “outstanding.” Parents of younger children are quick to share the inspirational stories of attractive and articulate actors or students who excel or are named homecoming and prom king or queen.
If these biases exist within our own community and within the physician/medical care community, is it really a stretch to wonder whether parents are being convinced to allow their adult children to “die peacefully” rather than fight for life? A quick look at history suggests no. It was not so long ago that physicians easily convinced parents to institutionalize their children with Down syndrome because it was seen as the best or only socially acceptable thing to do.
So now, as our children are living longer, is there pressure to let them die? Do changes in behavior, which are often mistaken for early signs of Alzheimer’s, impact surrogate decision makers’ ability to be rational? Do families fear the unknown so much that they can be convinced to withhold treatment rather than face life with Down syndrome and Alzheimer’s disease? At what point in the progression of AD do caregivers give up?
Does race, class, or other factor play into this scenario?
Are communities who are traditionally removed from advocacy and education about disability rights as civil rights easy targets for abuse and neglect?
If so, minority, poor, and rural families may have a different experience of aging with Down syndrome than some of us are willing to fathom.