Recently, the New Jersey Legislature passed a bill banning denying organ transplants for people with disabilities based solely on their disability, and Gov. Chris Christie signed it into law. The momentum for such action came from a case where a young girl, three at the time, was turned down for a kidney transplant because she has Wolf-Hirschorn syndrome, a chromosomal developmental disability in which the degree of disability can vary greatly depending on the amount of genetic damage. In January 2012, a doctor at the Children’s Hospital of Philadelphia informed Amelia’s parents that she was not a candidate for a transplant because of her disability setting off a firestorm of criticism. The hospital apologized and performed the operation.
Some comments below the posted article question why it’s appropriate for people with less life expectancy than others be treated while other people still wait.
As a sound bite it may seem like they have a point to people who don’t think very carefully about these issues. That can lead to a dangerous step backwards for people with disabilities and a pretty scary slippery slope for making life and death health care decisions for everybody.
If we go down that road, all manner of people get thrown into the mix. Are children who are more active then ranked above those who are more sedate? Poor eating habits vs. healthy diets. Living in a polluted environment vs. pristine one. Sound silly? It’s not that much more outlandish than some previous practices that were all too real historically, such as allowing doctors to perform experiments on people because it was determined at that time that the subjects were not capable of knowing what was happening to them or had any realistic chance of having a so-called “normal” life.
Admittedly, we have evolved much since those days. And I’m not accusing those or any other commenters or any particular doctors or institutions of belonging to those times. But some of those underlying prejudices about people with developmental disabilities are obviously still here.
Both the decision to not recommend the transplant and the comments against it are based on beliefs, unconscious most likely, that a disability is reason enough to give that person’s life less value, in this case for what affect that condition may or may not have in the future. We’ve talked about this larger point in this space often. It is pervasive and diifucult to eradicate.
This law is another important step forward in an ongoing effort to strip away those ingrained prejudices against people developmental disabilities and the practice of applying diminished standards when it comes to protecting their medical, civil, social, political and human rights.
I hope we can agree that denying medical treatment based on a best guess as to the patient’s projected longevity and overall quality of health in the future is unworkable and potentially dangerous. It leaves those lifesaving decisions to individuals who may or may not have biases that could effect that decision. I don’t think we would want to take that kind of a chance if it were us or someone we love.
Given that agreement though, denying treatment based on a developmental disability or any other criteria not immediately relevant to that treatment is clearly discriminatory. And reducing instances of discrimination benefits us all.