Tuesday, December 9, 2014

The Best Stella Young Tribute


I have been really impressed with how the ABC (Australian Broadcasting Corporation) and other bloggers and news outlets have written about Stella Young after her unexpected death. I have seen barely a whiff of either “inspiration porn” or morbid fascination with the details of her disability. The ABC’s articles were loving and respectful.

Still, Benjamin Law’s article is by far the best tribute I’ve read so far.

Notes On A Vox Article

Andrea Louise Campbell, Vox - December 9, 2014

It is important to highlight really informative articles on disability that appear in mainstream publications. The general public knows very little about what life with a disability actually entails. Unfortunately, most stories about disability in newspapers, magazines, and news programs focus on individuals and emotion, at the expense of information on broader policy and how it works … and fails … for disabled people across the board.

This Vox.com article is very informative and as far as I can tell, accurate. More importantly, it provides a very good explanation of the income “trap” that so many disabled people find themselves in, because essential supports are part of income-tested programs for the “poor”.

A few thoughts on the article:

- The article is excerpted from the author’s book. It mentions the Affordable Care Act, which suggests that it is fairly recent.

- I was surprised to see no reference to the ABLE Act, a bill very likely to be passed and signed into law in the next few days that would provide at least a partial way around the asset limits described in the article. Unfortunately, recent amendments to the bill might leave the article’s subject, Marcella, out entirely, if she was over 26 years old at the time of her accident. (The article doesn't mention her age, but suggests she was a young adult). If nothing else, the amendment is a good example of how the “social safety net” grew in such a piecemeal way … with lots of arbitrary limits and loopholes added simply to reduce cost.

- Ms. Campbell takes extra care to explain how income and asset “tests” reward low income rather than high. She implies that most sensible laypersons will find this counter-intuitive and strange. It certainly is maddening, but I don’t see why it’s so surprising. Almost all social assistance in the United States is based on economic need, rather than neutral characteristics like disability alone. It’s the way most American voters think they want it … help for people who need help, not for people who don’t. If you make more money, you need less help. That’s the idea anyway.

- Personally, I would prefer a lot less means-testing, even if that meant relatively well-off disabled people getting help, especially for supports almost nobody can afford, like home care and assistive technology. Barring that, though, I think the system could be made fairer and more humane just by revisiting where all the income and asset limits are set, and comparing them to current cost of living in various regions. We don’t necessarily need to overturn the whole system. Making in more economically functional for individuals and families would go a long way.