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Down syndrome mom: the “death with dignity” debate insults my son’s life

Brittany Maynard
PRNewsFoto/Compassion & Choices
Death-with-dignity advocate Brittany Maynard had a voice.
Published This article is more than 2 years old.

This post originally appeared at Role Reboot

Earlier this month, Brittany Maynard made the much publicized decision to end her life rather than wait for her Stage IV cancer to inevitably kill her instead. Like many people around the world, I felt great sadness and sympathy for the choice she made, a choice I believe she had the right to make.

But, along with many others in the disability community (my son has Down syndrome; I have bouts of severe depression and anxiety), I am very concerned about the direction of what is termed the Death With Dignity debate. Because, while on the surface, proponents make a distinction between terminal illnesses and disability, it is seemingly inevitable that such conversations about what makes life worth living will ultimately tend toward devaluing the disabled.

Last month, Lenzi Sheible detailed the way in which the “fetal abnormalities” argument often espoused by the pro-choice movement “devalues the rights of real people.” Instead of holding fast to the feminist argument that reproductive rights are about women’s rights to control our bodies, the pro-choice movement instead often tells stories of women who are carrying disabled children and of course want an abortion and of course must have access to that right. Sheible writes:

When we rely on that stance, we’re trading on discourse that says, “No one would want to live if they had disabilities like those,” or “No one would want to take care of children with those kinds of disabilities.” What does that say about the people who are living with disabilities like those? That they should have never been born?

The fact that the fetal abnormalities argument is more palatable to the general population than the notion of women’s equality demeans both women and the disabled. I am pro-choice, yet I often feel suffocated by a movement that has little room for my truth that I knew my son had Down syndrome and serious heart issues before he was born, and my choice was to be his mother.

I sympathize with the fear that other parents in a similar situation feel. I was depressed to the point of hospitalization at my son’s diagnosis. But my personal belief system is such that I chose to accept the circumstance the universe had brought me. And, while the journey has not always been easy, my 6-year-old boy fills my life with happiness on a daily basis. And I have every expectation he will graduate from high school, work in the community, and have meaningful adult relationships, both romantic and not.

So while I support the right of other mothers to choose differently, I wish that, in matters of abortion and disability, the voices of the disability community would be given more weight, both by the larger movement and the individuals facing difficult personal choices.

Given that experience, I am gravely concerned that the disabled community will be similarly silenced in the discussion of Death With Dignity laws. In the wake of Brittany Maynard’s revelation, a medical case from the UK has received some national media coverage. In August of this year, 12-year-old Nancy Fitzmaurice’s mother petitioned a court and won the right to allow her disabled and medically complex daughter to die. Nancy was killed through the withholding of food and water for 14 days.

No doubt, there are many details of Nancy’s condition that are not available to us. However, the details provided to and by the media in support of her death include the statement that she was fed and hydrated via feeding tube and that the pain medications of morphine and ketamine did not provide relief, leaving her screaming in pain for hours on end. While I do not have the medical expertise of a doctor, I do have some firsthand experience with these issues. And the fact that Nancy’s mother, a judge, and the media use them as critical elements in the rationale for her killing absolutely chills me.

First of all, the existence of a feeding tube is often brought up in these sorts of cases. The reports leave the uninitiated with the impression that a feeding tube is akin to being on life support—an otherwise non-viable human being kept alive with machines. In fact, Nancy’s death was brought about by the withholding of support from the feeding tube, just as the law allows individuals to be removed from life support.

But, on the spectrum of medical interventions, a feeding tube is rather minor. My son has lived with a feeding tube since he was 1 month old. Sustaining him in this way does not require daily contact with medical professionals—my partner and I do his feedings. We have taught babysitters to do the same. When he is older, we will teach him. The machinery involved fits in a backpack that he wears during meal times. It does not impede his ability to interact with the world. It is a nuisance, but much closer to the experience of, say, a diabetic who must regularly monitor blood sugar, than of a person on life support. And stopping support of a feeding tube is nothing but starving a person to death.

Then there is Nancy’s pain. Per the above, a cocktail of morphine and ketamine still left Nancy screaming in pain for hours on end. After his second heart surgery, my son was given heavy doses of morphine. Enough to create an addiction. And he screamed for two days straight until it left his system and the doctors prescribed more effective help. Once, during a more minor procedure, he was given ketamine instead of general anesthesia. Also commonly known as the street drug “K,” the drug has valid medical uses and the very common side effect of causing hallucinations. My boy had to be held down by both my partner and I for two hours after the procedure, so extreme was his thrashing and screaming from the drug.

So I wonder, was Nancy screaming in pain or was she being given the wrong sorts of medication? My fear for this little girl is that what she really needed was not a “mercy” killing, but rather a medical advocate who would challenge the doctors and their treatment methods.

I am outraged at Nancy’s death. A court allowed a 12-year-old girl to be starved to death over 14 days, ruling that it was in her best interest. An extreme case, but it happened in a developed country just weeks before Brittany Maynard took a pill to end her own life. Brittany had a voice. Nancy did not.

So while Death With Dignity advocates in the US are currently denying a link between the two cases, I argue that disability advocates have an obligation to make sure that Nancy’s case is heard now and is entered into the ongoing debate about assisted suicide.

If the reproductive rights movement can so easily slip into the degradation of people with disabilities, we cannot simply wait and hope that an even more closely related issue like Death With Dignity will be immune.

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