Weekly Reading List

Two shelves of multicolored books

Confined to Nursing Homes, but Longing (and Ready) for Home
Katie Thomas, Sheri Fink and Mitch Smith, New York Times - May 13, 2016

This article should probably go on a list somewhere of the definitive mainstream examinations of this confusing but absolutely essential disability issue we refer to as “Long Term Care,” “Long Term Services and Support,” and, more pointedly, “The Institutional Bias.” It might be the single most difficult disability policy issue for the uninitiated to wrap their heads around. Some people need help from another person, every day, to do everyday things. Traditionally, most of those people had to go into a nursing home or similar “facility” or “institution” to get that care. In recent decades, more of these people have opted, when possible, to get the same care and assistance while living in their own houses and apartments. The problem is that the only insurance program that pays for life-long care of this kind is Medicaid, and in most states, a web of medical and fiscal rules and regulations wind up making it a lot easier to get institutional care paid for, and a lot harder if you want to stay at home instead. This is the case even though most people on some level instinctively know that living at home is better than being in any kind of institution, even a “nice” one. This is also the case even though on average, Long Term Care costs a lot less when it’s delivered at home, and a lot more when it’s in a facility. There’s really no simpler way to explain the issues. There are too many moving parts, and I haven’t even touched on the prejudices, ableism, and professional biases involved. All of which is simply to say that articles like this are invaluable and should be widely circulated and used to explain the issue.

Disability Activism In The UK: Interview With Merry Cross
Alice Wong, Disability Visibility Project - May 9, 2016

There’s too much information and shifted perspective in this great interview to review here. Let’s just say that every now and then, we in the U.S. should sit down, like Alice Wong does here, and pick the brains of the most engaged disability policy activists we can find in other, comparable countries. Disabled people in the U.K. struggle over somewhat different problems than we generally do in the U.S. Roughly speaking, their service systems seem a little more organized and simple, but also more centralized and therefore easy to cut if the public political mood happens to shift, as it did several years ago in the United Kingdom. In the United States, we have had to fight somewhat less intensively to maintain funding for things, and our focus instead is on pushing the boundaries of basic civil rights, de-institutionalization, and better program design and delivery. Frankly, I’d rather have our battles than what’s happening in the U.K., although there may be something to be said for having more clarity about who your enemy is and what’s at stake. This is a great read.

Dozens chained to railings in Berlin disabled protest
The Local.de, Germany’s News In English - May 12, 2016

It’s good to see disabled people in another country put it on the line for accessibility and civil rights. It’s also fascinating that Germany might pass a comprehensive, ADA-type law without including private businesses. Advocates for that approach say the law would be a suggestion, a road map if you will, and they mean that as a good thing. On the face of it, that sounds pretty weak and craven. Yet, isn’t that mostly how the ADA functions here in the U.S., especially how it deals with accessibility of businesses? There are enforcement mechanisms, but they are very hard to engage, and they only really bite for high-profile “test cases” that are supposed to frighten the smaller fry into compliance. Other than that, most of Title III is a set of suggestions, and a road map for how to do the right thing, (a.k.a., accessibility standards). Mind you, they are excellent, well-thought-out suggestions, and the road map on how to do physical accessibility is absolutely essential. But maybe Germany can figure out a way to do the enforcement part better, because we here in the U.S. certainly haven’t figured it out.

Uber is becoming a monopoly. It should start acting like one
Timothy B. Lee, Vox.com - May 9, 2016

I am glad to see this article on Uber mention it’s sketchy relationship with the disability community and the whole concept of ensuring equal, non-discriminatory service to people with disabilities. Something a bit like Uber should probably play a bigger role in making transportation overall more accessible to disabled people. For while back in the ‘aughts, I made a few attempts at my ILC to talk up the idea of recruiting disabled people who own their own wheelchair accessible vehicles to provide some paid transportation on some kind of on-call basis. We didn’t have a good system for connecting them with riders. There were, as there always are, insurance barriers. Most importantly, in a small city and rural surrounding area like ours, there just weren’t enough people with accessible private vehicles to make a dent. I still think it’s a good idea for some places. But first, companies like Uber have to stop being adolescent brats and start growing up and taking on adult responsibilities, like making sure drivers don’t turn disabled people away just because they don’t feel like bothering.

Black Disabled Woman Syllabus: A Compilation
Vilissa Thompson, Ramp Your Voice! - May 5, 2016

I have a lot of work to do on intersectionality. I think I understand the basic concept as it is typically meant when the term is used, but I’ve only barely begun to draw out the implications for personal behavior, writing habits, and activism. However, anyone can see the value of curated reading lists like this one. At least, anyone should see the value. If nothing else, listing so many pieces about black disabled women adds a lot to the whole of the theoretical library on disability that is available to us. I want to pick something good from this list to start with, and dig in.