Disability Fieldnotes Digest: Jan 24-29

Politics and Current Events

Disability Advocates Fight Disabled Governor” (NPR’s Here and Now)

Austin-based disability rights activist Bob Kafka reflects on Governor Greg Abbott, the first U.S. governor since George Wallace to use a wheelchair in office.

Execution of Warren Hill ‘Shakes the Foundation of our Legal System for People with Intellectual Disabilities” (The Arc)

On January 27, the state of Georgia executed Warren Hill, a convicted murderer known to have a lifelong intellectual disability. Despite past Supreme Court rulings that the death penalty is unlawful for individuals with intellectual disabilities, only Justices Sotomayor and Breyer voted for a stay of execution. This is truly a shocking story.

It’s Illegal for Georgia to Execute Warren Hill. But the State Won’t Let Him Prove His Disability,” by Peter Berns (Washington Post)

Georgia Executes Inmate Warren Hill After Supreme Court Refuses Stay,” Ed Pilkington (The Guardian)

Vaccines

To Protect His Son, A Father Asks School to Bar Unvaccinated Children,” by Lisa Aliferis (NPR)

A San Francisco-area father has asked that his local school district ban unvaccinated children amidst the current measles outbreak in California. His six-year-old son cannot be vaccinated, due to a four-year battle with leukemia that is now in remission. As he argues, other parents’ vaccine exemptions on the grounds of belief endanger his own child. This is a compelling and developing case, and is one to keep an eye on.

Sick Child’s Father Seeks Vaccination Requirement in California,” by Tamar Lewis (NYT)

Measles Can Kill, and It’s Spreading. Sue Parents Who Didn’t Vaccinate? Absolutely,” by Dan Diamond (Forbes)

 

Technology

What Facebook Means to Special Needs Families,” by Rachel Engel (Huffington Post)

An interesting piece by the mother of a girl with a rare neurological disorder on the central role of digital communities for such families. She describes Facebook as “a lifeline” that connects her to other families in her daughter’s small diagnostic community.

Research

More Differences Than Similarities Are Found in Autistic Siblings,” by Benedict Carey (NYT)

In-Depth

“‘Food Is a Death Sentence to These Kids,’” by Kim Tingley (NYT)

A fantastic NYT Magazine piece on children with Prader-Willi Syndrome (PWS), a rare disorder that is a known genetic cause of obesity. People with PWS experience chronic feelings of hunger. They literally do not feel full. I worked at a home for adults with PWS during college and was fascinated by the omnipresent padlocks on anything that could be ingested – the refrigerator, garbage cans, medicine and supply cabinets. Whether you are familiar with PWS or not, this is a fascinating read.

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