Last week, the quarterly Interagency Autism Coordinating Committee meeting took place. IACC is a government advisory panel responsible for setting federal research priorities. A thread running throughout the six hour meeting was representation and diversity, or lack thereof, both in autism community leadership positions and within IACC itself. In many ways, the sessions were a string of events demonstrating not only the need for more autistic representation, but the need for racial diversity. There are currently only two autistic members of IACC. A third autistic member, Amy Goodman, stepped down in 2017. Similarly, IACC's membership is almost entirely white. Dr. Marcella Ronyak, IACC member and Deputy Director of the Division of Behavioral Health for the Indian Health Service, gave the first presentation of the day. She began by asking how many people in the room had a good understanding of what Indian Health Services is and what it is that they … Continue Reading ››
In 2016, the Ford Foundation made a commitment to social justice. Unfortunately, their early efforts were plagued with missteps when it came todisability community issues. In 2017, the Ford Foundation made a commitment to centering disability rights. The result of this new effort is still in its early phases, but the work they have done on disability so far has been nothing short of extraordinary, and there is even more to come. Speaking with NOS Magazine, Noorain Khan of the Ford Foundation was candid about the process of growing much-needed knowledge on disability. "2017 was us diving in, meeting with activists, self-advocates, folks in government, nonprofits, and other funders... [We] met with any disability organization that requested a meeting. This shaped [our] knowledge and the knowledge of the Ford Foundation itself." "[The Ford Foundation] knew that we couldn’t do this by ourselves." They hired disabled consultants and brought disability … Continue Reading ››
This is it. Dr. Shaun Murphy's first interaction with an autistic patient. I knew it was coming -- It's an obvious and necessary direction for Shaun's story to take. Even in the bizarre, distorted world of a prime time medical drama, Shaun can't reasonably be the only autistic person on Earth. There was exciting news: Liam, Shaun's autistic patient, would be played by an actually autistic actor: Coby Bird. Bird is 15, talented, and has previously appeared on the ABC comedy Speechless. I hope to see him in future episodes of The Good Doctor. It would be wonderful if Shaun could act as a mentor or role model of sorts, rather than Liam merely being a patient-of-the-week. That said, I was terrified that this episode would advocate for what Julia Bascom has called, "the IQ test for human rights." Some toxic corners of our community believe autistic people perceived as … Continue Reading ››
After days of protest and pressure from disability rights activists in Chicago and Washington DC, Congressman Bobby Rush has withdrawn his sponsorship and support from the misleadingly titled, "ADA Education and Reform Act," also known as HR 620. Disability advocates, activists, and organizations have all come out against the bill. Scott Nance, a co-organizers of the direct action that ADAPT held outside Congressman Rush's Chicago office, told NOS Magazine, "I am proud of the Congressman for being open to learning more about our concerns... Bobby Rush has preserved his identity as a leader in protecting the civil rights of every person." Rochester ADAPT activist Anita Cameron was pleased with the outcome and highlighted Congressman Rush's own past activism. "I thank Congressman Rush for listening to his constituents and colleagues and coming off of HR 620... I hope that he hearkened back to his Black Panther roots." Cameron also had … Continue Reading ››
This week’s episode, "Not Fake," preserves Shaun Murphy's complexity and humanity for another week. While this episode was excellent from a neurodiversity standpoint (everyone struggles in stressful situations, not just neurodivergent people), it completely failed when it comes to physical disability. Rather than live with an amputation and a prosthetic, a man's wife fights to have a risky, experimental surgery that would preserve his leg. To be fair, it is entirely realistic that doctors have a poor understanding of disabled quality of life. This episode didn't highlight that lack of understanding, though. Instead, it plays into one of the most negative tropes about living with a disability: That it is worse than death.