Ending Organ Transplant Discrimination Against Those with Disabilities

During the pandemic, the world learned that some British doctors placed "Do Not Resuscitate" orders on COVID-19 patients with intellectual disabilities. These orders reflected a tendency across Western culture to commodify human life, valuing people based on extrinsic abilities and appearances rather than assuming inherent value for all who are part of the human family. As a result, the disabled are not deemed as valuable as the non-disabled. To be clear, the pandemic didn't cause this way of seeing those with disabilities, it only revealed it and worsened it.

For example, a recent story at NBC News reported that denying organ transplants to people with Down syndrome and autism "is common in the United States, even though it is illegal under the Americans with Disabilities Act." According to one study, 44 percent of organ transplant centers will not add people with developmental disorders to their transplant list. Eighty-five percent "consider the disability as a factor in deciding whether to list the child." That's against ADA policy.

One reason given to defend this discrimination is that someone with Down syndrome "may not be able to comply with post-transplant requirements, such as taking immunosuppressive drugs." This "reason" doesn't pass the laugh test. The intellectually disabled are usually, as several of my colleagues will attest, perfectly capable of taking their meds on schedule without assistance. Those who are aren't have guardians and caretakers who can ensure they comply.

Another reason given for leaving individuals with disability off transplant lists is far more sinister. These patients are, some clinics claim, "more likely to have co-occurring conditions that would make a transplant dangerous" and "the patient's quality of life would be unlikely to improve with a transplant."

On one hand, as a report from the National Council on Disabilities found, these worries are unfounded. Though some disabled people do have co-occurring conditions that make transplant surgery dangerous, most don't. And patients with intellectual disabilities can benefit from transplants as much as any other patient.

The real story behind this discrimination, in fact, can be summed up in the phrase "a patient's quality of life," a phrase that has been used throughout history, but especially recently, to promote various forms eugenics. After all, providing people with "less-worthy lives" with a transplant is to waste a perfectly good organ that could go to someone more "valuable." Already, as NBC noted, more than 100,000 people are on the waiting list for organs nationwide. The average wait times, even after a patient makes the list, can be three-to-five years. Hopefully, new technologies such as printable organs will soon be available, but until then, rationing is necessary. So, shouldn't the organs go to the "best of us?"

Of course, no one puts it like this. To do so would expose the lethal logic at work behind leaving people with intellectual disabilities off the list. Instead, we hear things about disabled people not "benefitting" from a transplanted organ, which is absurd. A new heart beats and circulates blood. This is true regardless of the person's intellectual capacity.

Today, 16 states ban this kind of discrimination, with similar measures pending in eight other states and in Congress. Still, these laws face an uphill battle, even if passed. As the head of the National Council on Disabilities admitted, the real goal of these laws is to inspire "a change of heart so people understand that they are discriminating."

So, even as we support the legal efforts to prevent this discrimination, we remember that the best protection for people with disabilities is to recover the idea of the Imago Dei. When people cease seeing themselves and others as image-bearers, they see people as means and not ends, as units of utility to us and to society.

This is why we have chosen "restoring the Imago Dei" as the theme of this year's Wilberforce Weekend. For three days, May 21-23, in Dallas/Fort Worth, we will be exploring how to apply this principle to our cultural moment. I hope you can join us. Come to WilberforceWeekend.org to learn more and to register.