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.”
The reality TV show ‘Born This Way’ won two Emmys for outstanding casting and cinematography. The show was also recently renewed for a fourth season by cable network A&E. Click here to read the full article by Shaun Heasley on Disability Scoop.
Down Syndrome Reality Show Takes Home Emmys
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
Amy Silverman, author of “My Heart Can’t Even Believe It,” discussed her book about Down Syndrome, writing about disability, and more with the National Center on Disability and Journalism.
Watch the Facebook Live here
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.
A Disability, and a Mother’s Embrace
In her new book “Raising Henry,” Columbia University professor Rachel Adams separates her son from his Down syndrome diagnosis. In this New York Times book review, Adams is applauded for making the argument that Henry’s diagnosis is a disability, not a tragedy, but is asked for more personal reflection of who Henry is. Read more.