In a few hours I’ll be stepping out of my apartment to watch the solar eclipse. I am lucky to live right in its path, and it’s a beautiful day for it.
Meanwhile, here are your three disability-related links for Monday, April 8, 2024.
1. The safety net program trapping people in poverty
Jonquilyn Hill, Vox.com - April 3, 2024
“SSI is a program that supports low-income adults and children with disabilities. So why does a program that’s supposed to help Americans who have nowhere else to turn, instead … trap them in poverty?”
It’s a particular kind of good when a disability topic is dealt with seriously by a mainstream, (that is, not disability-specific), publication. That’s as long as the details are mostly accurate, and there’s some reasonable amount of actual words from affected disabled people. This article mostly fits the bill. What’s missing I think is the larger perspective, which includes Social Security Disability, or SSDI. There are similar work disincentives and need for reform in this program too, if a bit less urgent and financially debilitating. The ideal would be a more broad-based reform that raised benefits, benefits thresholds, and savings limits for both programs. But I’ll take whatever partial solutions might be feasible.
2. Is that business really grandfathered in under the ADA?
Marsha Mazz, United Spinal Association - March 20, 2024
Found: Facebook / Amber Smock
“Alex asked why the ADA hadn’t had the expected effect. However, because so many of us use “ADA” as a shorthand to mean “accessibility” in general, the building official assumed he was asking about the building code’s accessibility requirements.”
The idea that “old” buildings have some kind of blanket exemption from accessibility requirements is one of the oldest, most annoying defenses offered by businesses that don’t want to do any work on improving accessibility. As this piece explains, the Americans with Disabilities Act and local building codes aren’t the same. And the ADA requires at least some accessibility modifications, even in older buildings, to the extent they are feasible. Of course, that still leaves a lot of wiggle room. It’s not an absolute requirement that’s exactly the same and easy to enforce for every business. But it does suggest that accessibility advocates can and probably should keep the pressure on. It might even be a good time for a revived campaign to increase accessibility everywhere.
3. Learning to Advocate
Grace Dow, Grace Dow Writes - March 30, 2024
“I didn’t want to come across as a student who was complaining. I feared the president would think I was trying to cause trouble.”
One of the most powerful barriers to effective advocacy by disabled people is the intense social and internal pressure most of us are under to be likable and “low-maintenance.” I have never liked the idea, occasionally stated but often implied, that being proper self-advocacy needs to be personally aggressive and hostile. Just because you don’t want to be a doormat doesn’t mean you need to be a rabid dog. But on balance, I think that timidity among disabled people is still more of a problem than overzealous advocacy.
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Thanks for sharing Grace Dow's piece on advocacy. She writes: "Getting my needs met shouldn’t be this hard. It feels like I’m asking the staff to climb Mount Everest when I ask them for help."
That struck a chord with me. The Mount Everest defence is too often raised to derail advocates. When I was recommending that my sister Teresa (with Down syndrome) live in the community, I was told by another sister, “This is higher than Mount Everest. This is insurmountable. It will not work.” (Ten years of community living later, Teresa's either proven that she can scale Mt Everest or maybe it wasn't really an insurmountable feat!)
Grace summarizes beautifully, "Advocacy can be challenging for someone with cerebral palsy. However, advocating for myself taught me to be tenacious. I feel proud when I advocate for myself. It requires lots of effort, but it usually pays off."