A Follow-Up…and a Pledge

Well, a surprising thing happened. I wrote a post about three sweet babies with Down syndrome who passed away within a week, and it went viral, as they say. I shared it with my friends…and some shared it with their friends…who shared it with their friends…and Reece’s Rainbow somehow found it and tweeted a link to it…and before I knew it, 2,700 people had liked the article. Which was a very strange feeling, as my blog has always been a family blog intended for our close friends and family, so it was a little surreal to go on Facebook and see people I didn’t know talking about my post! But I was glad to have written something that struck a chord with people, so I guess it was strange in a good way.

I expect most of those people who liked the post will be one-time readers who won’t frequent the blog (because let’s face it, it’s usually just an update of what we’ve done during the week!), but in case anyone comes back to see if there’s a follow-up, I thought I’d write a quick one.

The last of the three babies I mentioned, Annie, did pass away, as expected. Annie was ineligible for a heart transplant, and that sparked upset in the Down syndrome community because Annie’s Down syndrome was cited as a reason why she was ineligible for the transplant. It was a reason, but as I understand it, it was not the only reason. She had pulmonary hypertension as well, and her body was weak from failed heart surgeries. She was a very, very sick little girl, and her story is nothing short of heartbreaking. I sobbed when I saw the news that she had died, even though I knew it was inevitable.

But the fact that Annie’s Down syndrome played a role in the decision that she was ineligible for a heart transplant is troubling, and it prompted me (and others in the community) to do more research. In brief, here’s what I learned:

  • Federal law prohibits people with disabilities from being discriminated against with regard to medical treatment, BUT…
  • It’s a thinly veiled secret that disability does play a role in decisions about who gets placed on the transplant list…and whether they ultimately receive transplants. (See http://autisticadvocacy.org/wp-content/uploads/2013/03/ASAN-Organ-Transplantation-Policy-Brief_3.18.13.pdf for just one discussion of this troubling topic.)
  • Reasons for denying people with intellectual disabilities include the thought that these patients would be unable to follow the complicated post-operative care instructions. I call foul on this claim, given that virtually all people with intellectual disabilities such that they would need help following such instructions have help in the form of a parent, loved one, or caregiver. People with Down syndrome, for example, rarely (if ever—I have yet to see a case) live completely independently. They virtually always have some sort of caregiver living nearby or with them who could help with this.
  • The real reason, though largely unspoken, is that people with intellectual disabilities are thought to be less deserving of valuable organs (which are in short supply), because they supposedly contribute less to society. This one makes a lump rise in my throat as I consider the troubling implications of making value judgments of a person’s worth. It treads very, very closely to eugenics, in my book.

So I want to help. I want to advocate for change. I want people like Annie to have a fair shot at a place on the transplant list, if that’s what they need. But how to fight this enormous gray area of he-said/she-said, where the medical community can simply say, “We didn’t deny this person a place on the transplant list due to disability!” and cite another reason for the denial? I’ve spent days pondering this. Because the unspoken truth seems to be that the medical community simply finds another reason to disqualify people with intellectual disabilities from the transplant list, so they don’t have to say that they would rather organs go to non-disabled people.

And I’ve come to a conclusion. There is a much larger issue at play here—the issue that people with intellectual disabilities are seen as less worthy and less deserving. And that is what I think really needs to change. This narrow definition of what makes a person worthwhile—a certain IQ, a certain level of skill or talent—is troubling. While we live in a world that makes value judgments like these, the playing field will never be level for people like my son.

So this is where I’m going to continue to focus my efforts at the moment. Don’t get me wrong—if I can think of a way to attack the transplant issue directly, I will most certainly get involved. But for the moment, all I can think to do in the memory of these three sweet babies who passed away is continue to try to level the playing field for those who, like them, are considered to have an intellectual disability. The least I can do for my sweet son and for others who share his chromosome count is to work as hard as I can to help erase those defining lines in what designates “worth”—those judgments that currently say that people with intellectual disabilities are an “other” and are less deserving of the basic rights that we are all supposedly born with. Because even if we treat people with intellectual disabilities with kindness—which, fortunately, is most of what I’ve encountered in my two short years as part of this world—the reality is that we are still treating them as different, as an “other.” And until that changes, we can’t erase discrimination—in medical care, in school settings, in the workplace, and anywhere else. To resolve issues of discrimination, we need society as a whole to stop making value judgments about what makes a person worthwhile.

Because we are all worthwhile. And no one will ever convince me otherwise. I can promise my son, and all children with an intellectual disability, that I will never stop doing my part to erase those lines the designate some as “other.” It’s the very least I can do. Who’s with me?

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