The Value of Disabled Lives and Organs

A 16-year-old boy died last month.

This boy had Down syndrome. This child was autistic and intellectually disabled. This boy was Black.

He was sweet and smiling, energetic and dancing, and beloved throughout the community. He touched and changed countless lives. His value to community and to so many people was simply immeasurable. 

Of course, the boy would have been no less precious and valuable if he had touched fewer lives—if he had been more marginalized and bullied as a child, as so many intellectually disabled children continue to be because we lack the collective will to stop it, or then if he had lived long enough to realize and experience the even greater exclusion and isolation that await most intellectually disabled adults over the rest of their lives. 

Either way, how we as a society actually valued him, and so many intellectually disabled human beings like him, can be measured—we demonstrate the real-life value we hold in the care, the services, the supports, and, again, the genuine inclusion we offer people with intellectual disabilities. And by these measures, surely, that proof of value is deeply lacking in and across our communities and society.

This child, 16, choked during lunch at school, had a seizure, and was denied oxygen for what proved to be much too long.

I visited him in the hospital three times for a couple of hours, twice when he was still alive and once after he was declared dead. His specific story is not mine to tell. I was just a visitor, offering momentary support to his very loving parents and close friends.

Still, there were truths in that room that I would like to acknowledge and at least call attention to.

To be sure, alive in the hospital—hooked up to machines keeping him alive—he received what seemed to be excellent terminal care.

But what disquieted and astonished me was the level of care and attention he received after his death, for what turned into several days, with the most expensive scans and tests, the constant monitoring and maintaining of his lifeless body seemingly kept alive, and a nurse stationed right outside his pediatric ICU door.

It was impossible not to recognize that, setting aside this one child, many—most—intellectually disabled children live with their families on societal margins, including economically and medically, and do not receive care, time, and attention remotely approaching what this boy received in death. And of course that’s true for most intellectually disabled adults, as well.

Often, instead, they struggle to receive decent quality, much less comprehensive, care in a system incredibly difficult to access and navigate—a high-wire line and circus act for taxed intellectually disabled individuals and their families who often lack the needed capacities to cross, with a shredded safety net below them that easily and often lets them fall and die.

It was impossible not to recognize that many of the tests so readily offered to this child after he died might well have been denied to him in life.

Why might an autistic, intellectually disabled Black boy with Down syndrome be so much more valuable in death than in life? Because his parents made him an organ donor.

That was a very beautiful choice they made in the worst possible situation any parent can experience.

But I realized in that room, too, societally and medically we put more value in disabled life for its spare parts in death than we do in that one person while living—the level of care offered far exceeds that usually accessible to intellectually disabled people during their lifetimes.

Medical testing that might have extended life or improved its quality—allowed someone to live a fuller and better quality life—is much more readily given for harvesting someone’s organs than as accessible care for an actually living intellectually disabled human being.

These human beings usually live economically as well as socially marginalized realities with limited access to health care. But in death, when the raw materials are there to be meted out to others to extend their lives, then the finest care, the most expensive care, is given.

We non-intellectually disabled people are all responsible—all of us—for this deficit of compassion for the intellectually disabled, the wholeness of our humanity indicted by our lack of recognition of theirs. Ours can only be reclaimed when the intellectually disabled are genuinely allowed to participate, contribute, benefit, and be included in society, without reservation and with joy, rather than hiding them away, leaving much of the population in or at the margins of poverty—without services and meaningful daily inclusion, without access to community, kindness, and care, including health care.

But what made it so dark to me in that room, even in the context of all the light I could readily see—the number and variety of lives this person touched, the sharing of stories and emotions and love that rippled across our community with his injury and then his passing, the intimacy of his end time with his parents who were both feeling the greatest loss of their lives and understanding they had received their greatest blessing for 16 years—was not just realizing that this all adds up to less, in our society’s measure, than what those organs could give to others.

It was realizing that those recipients will almost certainly not be intellectually disabled.

Denying organ transplants to intellectually and neurodevelopmentally disabled people with disabilities like Down syndrome or autism is common in the United States—many organ transplant centers won’t even add intellectually disabled people to their lists. Most states and the federal government lack enforceable laws banning organ-transplant discrimination against intellectually disabled people, even though studies show they benefit as much from organ transplants as non-intellectually disabled people.

Additionally, this boy was Black. Endless studies show Black people receive lower-quality health and medical care than white people across conditions. Studies also show that some racial disparities in organ transplants have actually worsened for Black patients over the past two decades.

If this child, receiving Cadillac care for days while dead to best prepare his organs for surgery so that they then could be delivered to others—if he himself had needed a transplant in life, he almost certainly would have been at the bottom of the list, if he could have even gotten onto it.

His organs were sent to help and save patients around the country—but he himself, and other children and adults similar to him, were not the sort of people ever likely to receive them.

That makes the gift his parents gave no less precious. But it makes us owe them—and owe him—much more and much better in our values, our determination, our actions, our laws, our prayers, and our love.

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I invite you to read and explore other articles on this site about intellectual disability, autism, and the value of disabled lives, including:

• My Talk at the 2019 Disability Day of Mourning
• Autism Adulthood: Caring for the Future and the Present Moment
• No “Because” But Love: Intellectual Disability, Identity, Representation, and Value
• Accept or Reject: Part 1 of a Talk on Autism
• Definition as Destiny: Breaking Autistic Boundaries
• Hammer and Screw: Autism Acceptance and Rejection
• Valuing Disabled Lives—and Remembering Lives Lost
• Are Autistic and Intellectually Disabled People Worthwhile Community Members—or Aren’t They?
• Autism 101: Hating Your Autistic Child