Disability Thinking Weekday: 9/17/24
Disability Thinking Weekday: 9/17/24
Hospital policy, the Paralympics in France, and remembering Steve Silberman
Your three disability links for Tuesday, September 17, 2024.
1. Johns Hopkins health system to pay disabled patients for alleged violations
Katie Shepherd, Washington Post - September 13, 2024
“The Justice Department alleges that the health system adopted a new visitors policy in October 2020 in response to the coronavirus pandemic, which restricted support people from accompanying patients in certain high-risk areas of the medical facilities … The company’s written policy made exceptions for patients with disabilities. Still, the Justice Department alleges some patients were denied their support people.”
This is both an arguable win on a fairly specific example of disability discrimination, and an example of a broader pattern in how disability rights are denied. On the one hand, the settlement deals usefully with another of several unique ways disabled people were discriminated against during the peak of the COVID pandemic — not being allowed to bring someone with them to the hospital to support and advocate with them, because of COVID precautions. At the same time, the details of the Johns Hopkins case seem to highlight the fact that there is often a gap between business or institution’s formal policies on accommodating disabled people, and how front line staff actually interpret those policies and deal with actual disabled people. Lots of places say they don’t discriminate against disabled people, and maybe even mean it. But what you think when you’re drafting policies and public statements isn’t always properly communicated to the people who have to actually implement them. I also hope that the training mentioned in the settlement won’t just be for lower-level staff, and will include middle and upper management, which I suspect is also to blame for sending mixed signals on such things.
2. 'After the success of the Paralympics, the question of disability must be considered in terms of equal rights'
Philippe Bernard, Le Monde - September 16, 2024
“And yet, one week after the closing ceremony, can we be certain, outside sporting circles, that "nothing will ever be the same again" for the 12 million disabled people living in France? It has been repeatedly said that the Paralympic Games would "change the way we perceive" disability, counteracting the miserabilism, paternalism and clumsiness that still dominate.”
I’m not quite willing to subscribe to Le Monde in order to read the whole article. I think the introduction is enough to lay out some interesting questions to think about. First, there is the usual question of whether, how much, and for how long events like the Paralympics actually change disabled people’s lives for the better. The same questions are asked after every Paralympics. Unfortunately, the answers are as tentative and vague each time — though they are always hopeful which isn’t nothing. The other question this piece raises for me is whether the status of disabled people is much different in France than it is where I live in the United States. The article’s language — I assume translated from French to English — mirrors the way we talk about disability rights and respect here. We talk about disabled people being hidden and disrespected too. But how much of this is just cookie-cutter rhetoric, and how much is it very descriptive of an acute, unique regional reality. In other words, is France an especially bad place to be disabled? Or, is it pretty typical of disabled life in other wealthy, diverse, democratic countries? Please share any thoughts on this in the comments below.
3. Steve Silberman, 66, Dies; Writer Deepened Understanding of Autism
Richard Sandomir, New York Times - September 5, 2024
“In an interview, Leo’s mother, Shannon Des Roches Rosa, a founder of Thinking Person’s Guide to Autism, a news website, praised Mr. Silberman’s work … ‘Steve changed the conversation around autism,’ she said. ‘He really popularized the idea that autistic people aren’t broken and are part of the tapestry of humanity. It’s a unique condition that’s always been here, and we need to do better by autistic people than punishing them for having different brains.’”
It was a shock to read of Steve Silberman’s passing. As the quote and article explain, he is one of a handful of authors who, along with countless advocates in other media and projects, helped change people’s basic understanding of autism and autistic people. He helped explain a very different, more empowering and hopeful interpretation of autism to two main audiences — people who knew almost nothing about autism, and people who seemed to know a lot about it, but viewed through a medical, negative, and at times even conspiratorial lens. He helped shift the dialog in ways that I don’t think it’s possible to view as anything but positive. I have read credible criticisms that his book “NeuroTribes” fell short on diversity — failing to reach out and describe the unique and often different experiences of autistic people of color. But that shortcoming is important precisely because of how positive the impact of Silberman’s work otherwise has been. More of it was needed, not less. In any case, the autistic and broader disability communities have lost an important voice and ally.
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