Utilitarian Thinking and Ableism

Two profoundly ableist articles had the disability community buzzing last week. Because of their subject matter, scope, and implications, it feels like many more articles were released, but it really is only two.

Content Note: Discrimination, Infanticide, Rape, Rape Culture, Systemic Ableism

"Ableism" written in white block letters on a brick wall. Key word: Peter Singer

Image Description: “Ableism” in white, block letters across a brick wall.

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The first article discusses ethicist Athur Caplan’s argument for a blanket policy that organ transplants not be granted when people have “disabilities that impair you so that you cannot have any quality of life.” He used being in a “permanent vegetative state” as an example, but conceded later that people with Down Syndrome should be eligible for transplants because “they enjoy life,” and “they contribute to their families, and their families enjoy having them.”

Well, that’s very gracious of him.

What I do like about Arthur Caplan’s article is that, while he does take a stance on his position with which I’m uncomfortable, he also puts out a call for dialogue about where the line at which organ transplant should cease to be granted (and while disabled people aren’t mentioned specifically, he does recommend that disability groups and the “transplant community” be involved), and a fairly comprehensive list of talking points. I think that disabled people and their advocates have plenty of talking points to add, but I’m going to get to that.

I think that this was one of the most important talking points on his list, from a paper by SD Halpern and D Goldberg that recently appeared in the New England Journal of Medicine: “Some healthcare professionals contend that cognitive function should not be a basis for allocating organs because it allows healthcare providers to decide that some lives are more valuable than others.” We know from the organ transplant denial cases involving Amelia RiveraPaul Korby, and Lily Parra that this is already happening.

I want to move on to the next article and come back to this one.

Peter Singer, Disabled People and Rape

The other article that grabbed the disability community’s attention this week was about philosopher Peter Singer’s recent editorial in the New York Times about the Anna Stubblefield case. Anna Stubblefield was a professor at Rutgers University when she had sex with a disabled student, D.J., and was charged with rape. She was convicted in 2015.

Nathan Robinson’s “Current Affairs” article about Peter Singer’s editorial is very good and should be read in whole. It shows how Peter Singer actually argues that in the court proceedings for the Anna Stubblefield case, D.J. was treated in an unfair and ableist manner. Writer Astra Taylor interviewed a disabled woman who was in the courtroom during the trial and who absolutely agrees with Peter Singer.

Robinson’s article doesn’t explain, however, why Peter Singer then couldn’t leave well enough alone and suggest that if a person is intellectually disabled to the point where they don’t understand consent, they can’t withhold it, and therefore they’d presumably enjoy sex whether it was forcible or not. D.J. couldn’t speak, but even if they presumed an intellectual disability, Peter Singer posits, he must have liked the sex because he wasn’t struggling.

It reminds me of the 2014 case in Georgia where Judge Christopher McFadden overturned the “Guilty” conviction for a man that raped a woman with Down Syndrome three times in 12 hours because she didn’t “act enough like a victim.”

As Robinson says:

“The New York Times therefore just published a philosophical defense of raping disabled people, and Peter Singer has — somehow — reached a new low on disability issues. (Actually, to be precise, an argument that it’s not clear what the harm is in raping disabled people, along with the implication that non-consensual sex acts against physically and mentally incapacitated people aren’t actually rape anyway if the victims do not know what consent is.)”

Peter Singer’s argument is disgusting, but not unexpected. He has in the past:

  • Debated whether it might be moral to kill disabled babies, and decided that in some cases it might be immoral to let them live.
  • Said he couldn’t raise a child with Down Syndrome because it wouldn’t make him “happy” not to raise someone that would be his “equal”.
  • Suggested that the lives of intellectually disabled people are worth less than those of non-disabled people.

Peter Singer is a utilitarian philosopher. It’s important to note that, not just because of the reasons (outlined by Robinson in his article) that utilitarian thought just doesn’t work well when you use it to discuss people, but also because it makes so many damn assumptions.

And we all know how much I love those.

Utilitarian Thought and Assumptions

Let’s go back to Arthur Caplan’s article for a moment.

Because there aren’t nearly enough donated organs to meet the demand for them, the approach to how people get them has always been somewhat utilitarian, to make sure that they go to people who need them the most, who will get the most use out of them, and who will follow the post-transplant regimen properly. It’s unfortunate, but difficult decisions need to be made when allocating scarce resources.

However, there’s an assumption at the foundation of Arthur Caplan’s argument that intellectually disabled people are in a different class than non-disabled people. Not only should their suitability depend on the practical criteria outlined above, but also on a determination that it’s worth keeping them alive to begin with: Do they “enjoy life”? Do they “contribute to their families”? Do their families “enjoy having them?”

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

If you could go along with Arthur Caplan’s reasoning and (apparently) believe that those criteria are even remotely fair to propose, how would we measure how well they’re being met? What evidence of being “enjoying life” would a transplant team be willing to consider? Who does a person have to make “happy” to be considered? What barriers to potentially enjoying life (or to expressing that enjoyment?) should be taken into consideration? What does it mean, to “contribute to a family”? Does family have to be biological, or could it be friends? Should those two types of families be weighed differently, and how? What about people who, through no fault of their own, have seen little or nothing of their families and haven’t had the chance to make that many friends (like those that have been instititionalized for most of their lives)?

Is it right to assume that, in the absence of information from the person, that just because they can’t have what a non-disabled person considers a good quality of life, that they’re unhappy and wouldn’t want their life prolonged by an organ transplant?

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

Peter Singer assumes that there’s no harm when an intellectually disabled person who doesn’t understand consent and doesn’t struggle is raped. He can’t know that. He can’t read minds. He assumes that a low IQ = no inner life. As a bioethicist, he should know better. His assumption that everyone responds to rape by struggling is easily refuted. I hope that by now someone’s made him aware of just how ignorant he sounded.

I’m willing to believe that Arthur Caplan actually wants to do some good, even if he’s misguided, but I suspect that Peter Singer is really just an ableist fuck who tries to use ethics to justify his positions. And I’m sorry that the New York Times saw fit to print his tripe without a balancing article correcting his assumption about how rape could affect an intellectually disabled person, and that advised that lack of consent doesn’t imply consent. Don’t have sex with someone if you don’t have their consent, period.

Bottom Line

As icky as these articles are, I’m not all that shocked by them.

I wish I was.

It’s just not a shock anymore to that these attitudes like these are still out there. It’s disheartening, though, to always come up as the option that’s not as preferable in these utilitarian reasonings, especially when the ableism is so obvious and especially when it affects resource allocation and safety on even as a hypothetical.

True equality still seems a long way off.

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Lily Parra Needs a New Heart

Here’s a familiar story. Four-month-old Lily Parra won’t be put on the transplant list for the heart she needs because of disability. Long-time readers may remember that I’ve written about two similar stories: Children’s Hospital of Philedelphia’s refusal (eventually reversed, after a long fight) to perform Amelia Rivera’s kidney transplant because of her intellectual disability, and the Hospital of the University of Pennsylvania’s refusal to put Paul Corby on the transplant list for a heart because of concerns stemming from him being autistic.

Content Note: Ableism, Child Illness, Organ Transplant, Medical Model of Disability

Dr's prescription pad with "Heart Transplant" written on it. Keyword: Lily Parra

Image Description: Dr’s prescription pad with “Heart Transplant” written on it

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Stephanie Parra was 32 weeks pregnant when doctors informed her about Lily Parra’s heart defect and how it meant that she probably wouldn’t live long past birth. They suggested that Stephanie have an abortion, but she refused.  Lily Parra was born on December 8th, 2015 and went home a month later, after surgery to have 2 stents put in her heart. Her parents took her back to the hospital a week later because of concerns that she was having a seizure. Doctors quickly saw that she was in respiratory distress, and  determined that she’d picked up a bacterial infection from being in the NICU that had settled in her lungs. After an echocardiogram also showed that Lily had mitral valve regurgitation in addition to her other heart problems, doctors determined that she needed to be put on the transplant list.

Read more about Lily Parra’s health problems

However, an MRI showed that Lily Parra had water on the brain, causing a condition called diffuse cerebral dysfunction that might result in developmental disability. Stephanie Parra says that she was told by doctors generally that “because of this diagnosis, her daughter would have a poor quality of life and therefore, they would not list her for a heart transplant” and by Dr. Shamel Abd-Allah specifically that “I don’t have a bag full of hearts that I can give to everybody and I’m not going to waste a heart on a kid who might have disabilities.

A letter from Loma Linda University Children’s Hospital posted on the online petition that Stephanie Parra has started states Lilly Parra isn’t being considered for a transplant because chromosomal abnormalities that will affect longevity. Stephanie says that she only heard about this when she heard doctors and nurses in the PICU discussing how Lily Parra was missing genetic material on chromosome 2p21. Individuals with this deletion are usually developmentally disabled.

I Get It

Donated organs are in short supply and tough decisions need to be made about how they’re allocated. Doctors should be reasonably assured that recipients are committed to caring for themselves and the organ that they’ve received – taking the anti-rejection medications, following up with doctors, and staying in good health to the greatest extent possible.

I get bringing up some disabilities as a consideration when evaluating people for transplant. If I needed a transplant, I would get it if doctors asked me questions like:

When you’re depressed –

  • Do you realize that you’re depressed?
  • How well do you take care of yourself?
  • Do you ever stop taking your medications?
  • Do you have a plan that you put in place to help you get back to baseline again?
  • How likely are you to put that plan in place by yourself? What kind of help do you need to get it going?
  • How long does it take you to get it going?

If I indicate that every couple of years I get so depressed that it’s hard for me to get out of bed and to work and my appointments, and that I stop taking all my medications, I imagine that this would be concern for a transplant team.

I think is fair it’s that disabilities with the potential to affect how well a transplant recipient  adheres to the regimen that will endure the success of the transplant be a concern in the evaluation for the recipient’s suitability for a transplant.

However…

Disability on its own shouldn’t dictate whether a person is excluded from transplant (especially very young children). Lily Parra may very well end up developmentally disabled. The reality is that we can’t know the extent of her disability at this point, and that, just as it would be fairly easy for me to put a plan in place with support from others that ensured I was taking my anti-rejection meds and seeing my doctors even when depressed, Lily Parra can have supports put in place around her as well, if needed, to ensure that she cares for herself as an organ recipient.

I worked with an intellectually disabled woman who never forgot to take her meds. She’d tell me, “I need to take my meds now.”

It’s not fair to decide when a baby is four months old that he or she will not be able to live with the demands of being an organ recipient, even if developmental disability is involved.

Lily Parra – Deeper Issues

Doctors want people who have the best chance of high “quality of life” to receive donated organs, but their conception of “quality of life” is often narrow and ableist. If doctors can’t imagine a recipient getting a typical education and ultimately contributing to society through paid work, family, community roles, etc., then they assume that donated organs would be better off with individuals who can do these things in the stereotypical ways that they envision.

This bias toward the stereotypical “normal life” (and emphasis on how potentially “functional” in society a person is as a criteria for being being an organ recipient), is highly ableist. It’s perfectly possible to have high quality of life while having significant disabilities, and almost certain that quality of life would be even higher without the physical and attitudinal barriers blocking disabled peoples’ full access to society. The view that disability is something that’s in the individual and needs to be cured is so prominent within the medical community that it’s actually called the medical model of disability, and its refusal to acknowledge that disability is a social creation (the social model of disability) doesn’t leave any room for the idea biology doesn’t predict destiny.

Again, especially when a potential organ recipient is very young, it’s terribly unfair to totally base a decision about whether or not someone gets organ on, “Disability always comes with low quality of life.” We should not be making decisions transplants based on whether we think a recipient could or couldn’t reach the quality of life that we’d consider acceptable because:

  1. What doctors consider a good quality of life may not be what the recipient considers a good quality of life.
  2. An individual generally should not be able to dictate what a good quality of life is for someone else.
  3. As much as I respect doctors and clinicians and their abilities, they are frequently wrong about what disabled people end up being able to do. My doctor at my first stroke rehab centre didn’t think that I’d ever really be able to move my left arm again. I have considerable movement in my left arm and am still getting return in my left hand after 15 years.

I Also Realize…

…that we don’t have the full story from Loma Linda University Children’s Hospital. Garrett Caldwell, Executive Director for Public Affairs at Loma Linda, wrote a letter in response to Special Olympics Chairman Timothy Shriver’s op-ed about Lily Parra in the Washington Post, but it was very general (as responses usually are). There are aspects of the story that don’t make sense – like why the Parras were not told about the 2p21 deletion, and why one doctor told them that Lily Parra was in kidney failure and another then said that she wasn’t. It’s totally understandable that parents under extreme stress might misunderstand information or might not remember something that was said to them. There may be other factors behind the decision to remove Lily Parra from the transplant list.

However, there’s enough consistency in Stephanie Parra’s story across media accounts to make me believe that it was said that Lily Parry would not receive the transplant because of a developmental disability or the potential for one, and this is not fair. It’s ableism that needs to be called out and that Loma Linda University Children’s Hospital needs to respond to.

I didn’t like most of Shriver’s op-ed, to be honest – I thought that he relied too much on emotion and not enough on fact to make his argument. But I do think he nailed it with this:

“This is an infuriatingly familiar story, and people with intellectual disabilities know it well. Too many medical professionals see them only in terms of “function” or “dysfunction.” The vast diversity of gifts and challenges that make up each of us are reduced to a binary conclusion. You’re either able or disabled, valuable or not. And when you’re not, you’re hopeless.”

Please sign Stephanie Parra’s petition to have the Transplant Board at Loma Linda University Children’s Hospital reconsider putting Lily Parra back on the transplant list.

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