4/23/25 - Struggling for independence, a national survey, and another way to call Congress
But how to we make disability activism itself accessible?
A bit of a mix today ...
Moving Out
Grace Dow, Grace Dow Writes - April 19, 2025
"She has used a wheelchair since she was a child. She works part-time and has two degrees. Unfortunately, at 29 years old she might have to live in a nursing home."
This blog post sketches out one young woman's dilemma: she needs more assistance, and better home accessibility to live independently than is available to her – for a variety of somewhat indirect reasons. It seems like she just barely fails to qualify for programs that might meet her need. And one of the most flexible and permanent solutions – home care – is hard to obtain due to staffing shortages, even if you're qualified for it. This has been a problem in some size or shape since well before I started being involved in disability issues in the early '90s. It's unlikely to get better now than the few existing programs at the federal level are being dismantled, and especially if Medicaid gets cut. As we advocate for better and to defend what we do have, we need to be ready to tell real-life stories like this one.
The National Survey on Health and Disability (NSHD)
University of Kansas Institute for Health and Disability Policy Studies - April, 2025
"The National Survey on Health and Disability (NSHD) is an ongoing survey of adults with disabilities, conducted five times previously in 2018, 2019/2020, 2021, 2022, 2023/2024."
Along with personal stories of disabled people's lives, we can always use better, more accurate, up to date data on all aspects of life with disabilities. I don't participate in every disability survey I run across. But I'll probably do this one. And I'll look forward to seeing the results and what they might tell us about what we should be working for, and how to do it more effectively.
How to Call Congress—When the Phone Isn’t an Option
Julia Métraux, Mother Jones - April 16, 2025
"The Autistic Self-Advocacy Network (ASAN) has responded to concerns that some disabled people’s voices aren’t being heard by setting up a proxy calling system for issues with significant impact for disabled people. The system, first established in 2019, can accommodate six to nine action items each year. Disabled people—they do not have to be autistic—can fill out a form and have a volunteer call on their behalf ..."
Disability activists work to make our communities and supportive programs more accessible and secure. But how to we make disability activism itself accessible? This appears to be one new way!
As always, give a thumbs up, thumbs down, or comment on this newsletter down below – and please do share with others who might be interested.
Action Alerts
Opportunities to take action on disability issues ...
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