Sept. 10, 2018, was the day I gave birth to 7 pounds and 8 ounces of absolute perfection — my son, Jonny. It was also the day I could no longer ignore, even unintentionally, the largest minority group in the country — the disabled (or differently abled for a shift in perspective).
You see, my son surprised us with an extra chromosome.
Many assumptions come with a diagnosis of Down syndrome. Without knowing Jonny, people make judgments about my son solely based on his diagnosis — both about his capabilities and his emotions.
Worse, people also make judgments about his worth.
Despite living in a time that promotes inclusivity, people with disabilities still face discrimination from transplant centers, hospitals and doctors when they desperately need an organ transplant to survive. Simply put, they can be denied access to organ transplants just because they were born different.
Parents should never have to worry about someone denying their child access to lifesaving care because of intellectual or developmental disability. Sadly, this is currently the case in Minnesota.
This discrimination is not new. Since organ transplantation first became an available treatment option, patients with disabilities have faced barriers. While the Americans with Disabilities Act (ADA) and the Rehabilitation Act of 1973 prohibit discrimination based on disability, discrimination continues due to a lack of federal enforcement or because medical professionals are unaware the organ transplant process falls under these provisions.
A 2008 study conducted by Stanford University found that 85% of pediatric transplant centers take into consideration neurodevelopmental status before approving or denying transplants. It’s baffling that these transplant centers are denying care to a vulnerable population despite statistics that reveal success rates of transplants for people with intellectual or developmental disabilities are on par with the general population. Imagine the lives that could be saved if there was no bias in transplant centers’ or medical providers’ decisionmaking.
We need state action to ensure people with disabilities’ lives are not devalued because of their diagnosis and that they are not refused medical treatment afforded to most patients. By ridding our state’s organ transplant process of discrimination, we can set the precedent that no matter your mental or bodily state, everyone can receive the fair and appropriate treatment they deserve.
In Minnesota an organ transplant anti-discrimination bill (HF3078/SF3035), or Jonny’s law, has been introduced to ensure equal rights when it comes to organ transplants.
In the process of pursuing this legislation, I was contacted by a mother whose 17-year-old son Bryce has autism and needs a liver transplant. They were subjected to discrimination by providers at two hospitals in Minnesota. While fighting the system and seeing Bryce’s condition worsen, the family decided to seek treatment in Ohio, where nondiscriminatory legislation was already in place. After his second appointment in Ohio, Bryce was informed he would be listed for an organ transplant.
It’s a sad state of affairs when a Minnesota family is ripped apart with mother and son temporarily relocating to Ohio, desperate to get him the medical services he is clearly qualified for.
Medical professionals opposed to this bill base their reasoning on unfounded assumptions about people with disabilities’ quality of life and misconceptions about their ability to handle postoperative care. Many patients with disabilities have support systems in place to make postoperative care a nonissue.
It is clear our state needs this detailed law prohibiting disability-based discrimination in the organ transplantation process. Many states have passed such overwhelmingly bipartisan legislation, and 13 states have already signed it into law.
I love living in Minnesota. I grew up here. I want my son to grow up here. As Jonny’s mother and on behalf of all parents across our state caring for children with disabilities, Minnesota should be a state that stands for all families, not just the ones that are deemed good enough.
Jonny’s law does not ask for any sort of special treatment for individuals with disabilities. We are simply asking that medically qualified candidates not be denied access to organ transplants because of any intellectual, developmental or physical disability.
My son’s worth should never be in question. Jonny is fully human and he should have the same access to organ transplants and anatomical gifts that you or I would.
Erica Hillyer lives in St. Peter, Minn.