Down syndrome

Mom of daughter with Down Syndrome and heart defect fights transplant discrimination

Jackie Ward is the mother of a three-year-old daughter with Down Syndrome and a heart defect. She recently became an advocate for disability rights after experiencing discrimination from doctors while applying for a heart transplant for her daughter. Ward is now teaming up with Ohio state legislators to pass laws that will give applicants with disabilities more leverage. Check out this article and video interview with Jackie Ward from the Columbus Dispatch.

“A 2008 survey by researchers at Stanford University found that 85 percent of pediatric transplant centers consider neuro-developmental status in the eligibility process at least some of the time, Hansen said. And in the same study, 62 percent of the centers said eligibility decisions based on disability tended to be made informally, making discrimination difficult to show.”

 

Bias in Transplants for People with Intellectual Disabilities

People with intellectual disabilities are fighting bias at U.S. organ transplant programs, The Washington Post reports. Now, advocates are fighting for federal and state laws to clarify that this bias should not be allowed when considering a patient’s transplant eligibility.  Read more

Recently Published Non-Fiction On Disability

 My Heart Can’t Even Believe It,  by Amy Silverman 

Amy Silverman’s story of “science, love, and Down Syndrome” is out on Amazon. Silverman, an award-winning journalist, shares her evolution from someone who once used words like “retard” and switched lines at the Safeway to avoid a bagger with special needs to raising a child with Down syndrome. The book is both deeply personal and well researched, with information and insights about how people with Down syndrome are treated in medicine, science and culture. Her book is available on Amazon. 

Wisdom From a Chair: Thirty Years of Quadriplegia, by Andrew I. Batavia and Mitchell Batavia

Twelve years after his death, the family of Andrew Batavia discovered his unfinished memoir and completed the work. Batavia shares the wisdom he acquired while living with a high-level spinal cord injury and fighting for the civil rights of people with disabilities. Read more about the book here.