By Ashley Bunici, NACDD Policy Intern
In the past few decades, a handful of legislation has advanced the protection of rights for people with disabilities, with the most substantial being the Americans with Disabilities Act of 1990. Yet, today, in 2024, people with disabilities are still being discriminated against across all sectors of our society. One of the most shocking examples is the blatant ableism and discrimination the disabled community faces within the healthcare system.
Currently, people with disabilities who need organ transplants are often denied the opportunity because their “quality of life” is deemed less valuable. This is completely discriminatory and unacceptable. Despite legislation aiming for equality, there are still loopholes that negatively impact the lives and well-being of disabled individuals.
There are over 30 state-wide protections against organ transplant discrimination, but there is no nation-wide form of protection. The Charlotte Woodward Organ Transplant Discrimination Prevention Act aims to create change at the federal level. Charlotte Woodward is an activist, pioneer, and a member of the disability community herself. I had the pleasure of speaking with Charlotte, who shared her life experience as someone with Down syndrome, her educational background, and her journey to Capitol Hill as the legislation bearing her name makes its way through Congress.
Born with Down syndrome, Charlotte has dealt with a congenital heart condition, leading to multiple open-heart surgeries and eventually a heart transplant. This critical procedure is one that Charlotte was fortunate to receive, as it is often denied to patients with Down syndrome and other disabilities due to their “quality of life” being seen as less than that of able-bodied individuals. “As it currently stands, people with Down syndrome and other intellectual and developmental disabilities are being denied the right to access organ transplants,” Charlotte shared. It wasn’t until she began her job at the National Down Syndrome Society that she learned how often people with disabilities are denied access to organ transplants.
The Charlotte Woodward Organ Transplant Discrimination Prevention Act is currently before Congress and aims to prevent discrimination based on disability in the organ transplantation process and provides legal resources to people with various disabilities if they face discrimination throughout this process. In bringing attention to this bill, Charlotte lobbied Congress, gave speeches, did interviews, and used social media to spread the message of her bill and highlight the sad reality that ableism is present in the healthcare system, as it is in many other aspects of our world. Charlotte and her colleagues are hopeful that this bill will pass after the August recess and before the end of the 118th Congress.
Charlotte studied at George Mason University, where she majored in Sociology with a concentration in Inequality and Social Change. She shared that she has learned to apply public sociology in her work at NDSS, and that her college education taught her never to give up on advocacy. She emphasized that if she doesn’t use her voice to advocate, nothing will change. Her role has grown during her time at NDSS, from working in community outreach and planning events to supporting educational policy, and now to becoming the Program Associate. However, her common goal in all these roles has been to continue advocating for people with disabilities. She emphasized that it is not only the laws that need to change but also the mindsets and attitudes of lawmakers and society. Charlotte said, “In order to do this, we need to educate people in Congress and our citizens about the issues the disability community faces, why they are important, and how these issues affect individuals with intellectual and developmental disabilities.” Self-advocacy stories from individuals experiencing this bias can also help spread awareness of this ongoing, discriminatory issue, and Charlotte believes that these stories are among the most powerful tools we can use.
The vision behind this bill is to end institutional bias, discrimination, and misconceptions about people with disabilities. Charlotte emphasized that “more needs to be done to eliminate [discrimination and bias] in our society and community” and believes that education is the backbone of this change. She recommends that everyone watch *Crip Camp*, a Netflix documentary that beautifully outlines the history of the Disability Rights Movement.
The passage of this bill would be a significant step in protecting people with disabilities within the healthcare system, but we must remember that it is not only laws that need to change but also the inherent biases many people in our society hold regarding people with disabilities. We must all challenge our underlying ableist views for real change to occur and to ensure equality for people with disabilities.
Source:
https://ndss.org/meet-our-staff
https://www.cbsnews.com/news/organ-transplants-discrimination-disability-rights/
https://www.gmu.edu/news/2022-03/mason-trailblazer-charlotte-woodward
