This week, we can expect the U.S. House of Representatives will move on the Build Back Better Act, the large economic and social spending bill in Congress. In the Senate, things will be trickier.
Right now, much-needed reform to Supplemental Security Income (SSI) is in a stand-alone bill, but activists are pressing for it to go into the BBB Act. And new data shows broad support to end benefits discrimination against disabled people living in U.S. territories.
Please take some time to read Beatrice Adler-Bolton’s writing about a quiet and profoundly disturbing push for “hospitals without walls” initiatives. Co-opting the language and rhetoric of home-based services to mask profit motives, these initiatives would move acute care out of hospitals, deskilling nursing and endangering public health. This is the opposite of disabled activists’ demands to fix chronically under-resourced home and community-based services in the large social spending bill.
As the costs of new federal legislation continues to pull a lot of focus, let’s also make sure to keep tabs on changes to charitable giving that will have significant and troubling impacts on the way philanthropy drives disability organizing in the U.S. The Stanford Social Innovation Review has just published some timely reads on this, including U.S. Rep. Ayanna Pressley & Rebecca Cokley on Disability Justice for policy development, Nikki Brown-Booker on participatory grant-making, and Sandy Ho & Jen Bokoff on dismantling ableism in philanthropy.
In other political news:
The U.S. is suing Uber for disability discrimination in their wait time fees. People who take more than 2 minutes to get into a vehicle once it arrives are charged for their delay, which is illegal when there is no exception for the time it takes to do things like break down a wheelchair for transport. Uber has previously argued that it is not subject to the ADA at all. Lyft has also been sued for discrimination (it settled a case last year). And efforts to expand taxi access remain difficult.
NPR has published new reporting on the access nightmares of air travel. The reporting is new, the issues are not. Some of this stems from the outdated Air Carrier Access Act of 1986, a law meant to prohibit disability discrimination and yet today all but guarantees it. Senate bill 642 introduced this year seeks to increase federal action over airlines and create safer wheelchair storage on planes. #Justice4Engracia.
Robert M. Califf has been nominated to lead the FDA, which he previously led at the end of the Obama administration. Biden has refused to put forward any candidate who does not have concerning ties to the drug industry that the agency is supposed to regulate. Califf boasts in his own bio that he has “received personal fees for consulting from Merck, Amgen, Biogen, Genentech, Eli Lilly, and Boehringer Ingelheim.”
CVS Health has withdrawn its appeal to the Supreme Court in a case that could have fundamentally undermined disability rights across the U.S. A coalition of the American Association of People with Disabilities, the Bazelon Center for Mental Health Law, the Disability Rights Education and Defense Fund, and the National Council on Independent Living brokered the partnership to take the case off the Court’s docket in December.
A federal judge has ruled that disabled Gov. Greg Abbott’s ban on mask mandates in Texas schools violates the rights of disabled students.
Moderna is attempting to remove NIH scientists from the patent application for its COVID-19 vaccine. This would limit the government’s capacity to oversee manufacturing and licensing of the vaccine.
Disabled veterans are leading the campaign to legalize life-saving psychedelics.
Time released the best accessibility inventions of 2021. (I would personally say disabled mutual aid should top the list every year. 🙃)
Britney Spears is finally free. It’s not clear whether there will be investigations into her conservators’ coercive behavior. It’s time to recognize the larger picture of conservatorship abuse in the U.S.
I am delighted to share some of my own news in today’s issue! After 10 years in academia, including the last 3 on faculty at NYU, I have moved into full-time disability organizing. I am honored to be working with Kinetic Light to support and connect artists in the field of disability arts. This is the work that has allowed me to bring this newsletter to you each week. I’m fired up and ready to strategize, collaborate, and build. You can always reply here from your inbox to reach me.
And now, some disability arts news:
In “Interdisciplinary Practice Is a Disabled Practice,” NowThis profiles Yo-Yo Lin in their SEEN series.
A new collection of writing chronicles the history of the Disability Arts Movement in the U.K.’s North East. And it seems to be an all-white history…?
Over 50 disabled artists will show work around Tkaronto this month through the Dis/Play public art project.
The Routledge International Handbook of Mad Studies is out. And it’s really expensive. Maybe some of the authors want to send their chapters to readers directly…?
One call this week:
Strategies for High Impact (S4HI) is a new initiative supporting progressive, intersectional work in and across COVID-19, Long COVID and complex chronic conditions in the United States, is seeking a part-time Development and Policy/Advocacy Communications Manager.
Finally, this week’s events:
Tonight, Monday, Nov. 15 from 7-8pm ET, Movement Research at Judson will present Christopher Unpezverde Núñez’s “A Fuzzy Yellow Spot.” In person. ASL interpretation and other access features by request to judson@movementresearch.org. No cost.
On Friday, Nov. 19 from 3-4:30pm ET, Constantina Zavitsanos will present “Holograms & Haptics at the Limit of Sight & Sound” as part of Barnard’s Design Talk series on Zoom. ASL interpretation and live captions. No cost.
On Wednesday, Nov. 17 from 8-10pm ET at Nowadays in Brooklyn and livestreamed (without captions), Nowadays Toronto-based CRIP RAVE organizers and Yo-Yo Lin will discuss accessibility in nightlife. Access features by request. No cost.
On Sunday, Nov. 21 from 2:30-4pm ET, the Public Theater in Manhattan will present an ASL interpreted performance of Erika Dickerson-Despenza’s new Afro-surrealist play, Callud Wattah, about the current water crisis in Flint, Michigan. In person. $30.
On Thursday, Nov. 18 from 6pm–8pm CST, Listen to Dis’ will offer (We)aving the Poem: A Collaborative Poetry Workshop with Tea Gerbeza on Zoom. ASL interpretation, other access features by request. No cost.