CW: Ableism
Exton’s Law, which protects disabled organ transplant patients, was passed by the Alabama Senate on May 25. House Bill 263 protects people with disabilities from discrimination during the medical evaluation procedure for organ transplantation. Four years after it was first introduced, the bill is on its way to Gov. Kay Ivey’s desk to be signed into law.
In 2019, Rep. Debbie Wood began working on the bill. The measure is named after Exton Black, a six-year-old Beulah, AL resident born with Down Syndrome. Wood initially heard Exton’s story in 2019.
Savannah Black, Exton’s mother, became aware of a similar bill being considered in another state. Her friend, who also had a disabled child, suggested she look into it. Thirty-six states currently have laws in place that prohibit this type of discrimination. Exton was born with Down syndrome. He has a tracheostomy and is vent-dependent.
Black learned that no law protected individuals with disabilities from discrimination during the organ transplant selection process in Alabama. People with disabilities have been denied organ transplants, according to Black’s research, due to erroneous assumptions.
Unfortunately, according to a 2008 study, 44% of organ transplant centers nationwide said they wouldn’t add children with intellectual or developmental disabilities to the list. The same study showed 85% percent of organ transplant centers nationwide considered a child’s intellectual or developmental disability when deciding to add them to the list
With a change, the bill was approved by both the House and the Senate. The Americans with Disabilities Act of 1990 empowers citizens to file criminal charges for discrimination. People could sue the state civilly rather than criminally under Exton’s law.
Disabled people’s lives are valuable. We deserve to be treated with respect and dignity in all healthcare settings. With how prevalent ableism is in society, it’s no surprise that even the medical field leads us to believe we are less worthy because of our disabilities.
Sources:
Reames, Charlotte. “One Step Closer: Representative Wood Champions Organ Transplant Bill – Valley Times.” Valley Times-News, 6 June 2023, http://www.valleytimes-news.com/2023/06/one-step-closer-representative-wood-champions-organ-transplant-bill/.
Richards, Christopher T., et al. ‘Use of Neurodevelopmental Delay in Pediatric Solid Organ Transplant Listing Decisions: Inconsistencies in Standards across Major Pediatric Transplant Centers’. Pediatric Transplantation, vol. 13, no. 7, John Wiley & Sons, Ltd, Nov. 2009, pp. 843–850, https://doi.org10.1111/j.1399-3046.2008.01072.x.
“Nondiscrimination in Organ Transplantation Laws &Toolkit.” National Down Syndrome Society (NDSS), ndss.org/nondiscrimination-in-organ-transplantation-laws-toolkit.