Tuesday, July 29, 2014

What Are We Arguing About?

white 3-d stick figure of a person pondering a thought, leaning against a red question mark
When you start reading around the disability blogs, as I did a year and a half or so ago, you get the impression that there are some pretty big arguments going on just under the surface of things. People with opposed views on disability topics rarely clash with each other directly, but there are obviously some high-stakes disagreements and misunderstandings sparking a lot of passion. The problem is that the terms of debate are almost never spelled out, and a newcomer to disability culture can become easily confused. What’s it all about?

I don’t want to fan the flames, but it might be useful once in awhile to try to articulate just what it is we are fighting about … or being passive-aggressive about as the case may be.

For example:

- Is disability a complex web of medical, social, and political factors that all affect how people with specific impairments live? Or, is all the social and political stuff a sort of mirage, distracting us from the pain and hardship of unpleasant medical conditions we should be trying to solve? This argument is at its most concentrated when there is a clash between efforts to eliminate certain disabilities entirely, and a view that doing this would be tantamount to genocide. However, a more moderate but similar argument goes on over where people prefer to direct their attention and money … to making life better for disabled people, or to ridding people, and society, of disabilities?

- What is autism? Is it a baffling and often debilitating brain dysfunction that kids and families suffer greatly from? Or, is it a very particular kind of brain and perception difference where autistic people are essentially ok if they’re allowed to be themselves and use their coping mechanisms, but parents and other “neurotypicals” make them miserable by trying to force them to “act normal”? It’s hard to stake out a middle ground here. It feels like one or the other side is not only wrong, but tragically, horrifically wrong. People disagree over the true nature of a few other specific disabilities, but autism seems to be the most divisive.

- Are most intellectually disabled people quite capable and fully self-aware, and just in need of some extra help and guidance to live satisfying lives? Or, are most of them severely impaired and in need of constant, life-long care and supervision? Most people would say some of both, and lots of in-between. But, one side tends to stress a more minimalist, positive view, while the other side focuses more strongly on needs and what they see as serious, insolvable deficits. The two sides seem to be looking at two different groups of people, while speaking as if to encompass them all.

- Are people with substantial care and assistance needs better served in their own homes with visiting nurses and paid personal assistants? Or, do they get better, safer care in specialized care centers like nursing homes and “assisted living facilities”? This argument is inseparable from the question of which model is more financially sustainable. Not to mention … whose needs are paramount, the person with a disability, family, or care providers?

- Which is more crucial to successful life with a disability … positive thinking and good behavior of the disabled person, or accessibility, accommodation, and respect from society, towards the disabled person? How we answer this question seems to depend a lot on which we believe is easier to change … ourselves or society. The answer to that is not obvious, either way.

- Is disability prejudice the result of ignorance or evil, confusion or hostility? Does it make a difference?

If you have read even just a little bit of this blog, and of other blogs by people with disabilities, you should be able to guess how most of us would answer these questions. Yet, they are questions, and the opposite answers are not so easily dismissed, once they are fairly laid out.

I have no grand point here. I just think it’s important that we remind ourselves of what we believe, and of what others believe who disagree with us.

Monday, July 28, 2014

Recommended: Excellent CRPD Information

Andrea Shettle MSW, Rambling Justice - Updated July 22, 2014

This is by far the best thing I have seen so far explaining the UN Convention on the Rights of Persons with Disabilities (CRPD), and providing everything an advocate would need to help push for ratification.

I would also like to give a qualified, cautious endorsement of @FightingCRPD, a Twitter feed satirizing the beliefs that have prevented the CRPD from being ratified. It is satire, right? RIGHT?

The Guaranteed Income Idea

Picture of a hand held palm up with a green dollar sign above it.
Dylan Matthews, Vox.com - July 23, 2014

I wonder how many disability policy problems would be solved or simplified if every American 18 or over could start each year with, say, $20,000 of guaranteed income? As Dylan Matthews points out, the idea is probably politically infeasible, and for a lot of people morally upsetting, but it’s not economically impossible.

From a disability perspective it would not only give all of us a firm … but not lavish … base to work with. It would also eliminate a lot of the anguish over eligibility we go through to get support. If everyone got a guaranteed income, it wouldn’t matter whether or not we have someone else’s conception of a “qualifying” disability. We might need to prove greater, more specialized need if we needed services in addition to income, but for many of us, that wouldn’t be necessary.

Thoughts?

Sunday, July 27, 2014

T-Shirt Of The Day

Top 10 things NEVER to say to a Disability Rights Activist. 1. What’s wrong with you. 2. It’s so great to see you out in public. 3. People like you are such an inspiration … if I were in your situation I’d probably kill myself. 4. Yeah we’re accessible … we only have two steps. 5. I was just parking there for a minute. 6. Wheelchair access is around the back … through the alley … behind the dumpster … just knock and someone will take you through the kitchen. 7. We’re covered by the Grandfather clause (NOT). 8. You can’t bring that dog in here! 9. Can’t he just read lips? 10. Can you drive? Who do you live with?

Recommended: Hashtag & Podcast

Maddie Ruvolo and Emily Ladau, who started a new podcast yesterday, Disabled Girls Talk, also started a great Twitter hashtag: #BecauseOfTheADA. This morning they posted a Storify page showing some of the resulting Tweets.

If you are the Twittering kind, why not keep the hashtag going? Also, be sure to listen to Disabled Girls Talk. In Episode 1, "Generation ADA", Maddie and Emily discuss what it has been like for them to grow up with disabilities in a post-Americans with Disabilities Act world.

Weekly Wrap-Up

Saturday, July 26, 2014

Guest Post at the Disability Visibility Project: The ADA - Three Disappointments, Three Victories

Disability Visibility Project, A community Partnership with StoryCorps @DisVisibility
I am very excited to have a guest blog post on the Americans with Disabilities Act, at the Disability Visibility Project website.

by Andrew Pulrang

Big thanks to Alice Wong, of the Disability Visibility Project for inviting me! I highly recommend following her on Twitter: @SFdirewolf.

ADA 24th Anniversary

24 years ago today, President George H. W. Bush signed the Americans with Disabilities Act into law. Here are some videos to help you celebrate!







Friday, July 25, 2014

"Criptiques" & "Criptionary"

Caitlin Wood, Criptiques - July 23, 2014

There's another great "Criptiques" interview out! Follow the link above to hear Caitlin Wood interview poet, performer, and disability activist Maria Palacios. Someone should really collect writings from all of these amazing people Caitlin is interviewing, into some sort of book. Oh, wait ...

During the interview, Catilin and Maria refer to Maria's book, "Criptionary". I haven't read it yet, but I have read a few sample definitions from the book, and they're hilarious.

If you want to know a little more about the book before you buy, visit the "Criptionary" Facebook Page.

Two Bills To Fight For

picture of a green highlighter pen highlighting the word Advocacy on a page of textThe UN Convention on the Rights of Persons with Disabilities (CRPD):

I regret sounding overly pessimistic about the CRPD the other day. Andrea Shettle, who has been keeping the Internet up to date on the CRPD left a comment that basically encourages everyone to keep the pressure up, and remember all the legislative barriers the disability community has faced and overcome in the past.

Objections to the CRPD are, in fact, ridiculous. It’s mainly a tiny sub-group of voters who hold these beliefs about how it would affect U.S. sovereignty or home schooling. One reason they stick, though, is that the vast majority of Americans aren’t even aware that the CRPD exists. If more people knew what it was, and heard exactly what has kept it from being ratified, they would be disgusted. So, tell your friends! Bloggers, tell your readers!

Meanwhile, you can click here to contact your Senators … especially the ones who are “on the fence” at the moment, or who voted "no" in the past.

The ABLE Act:

I wrote about the ABLE Act for Shared Abilities a few months ago. The bill has been active again this week, so Shared Abilities’ CEO, Julie Steckel, reposted my piece on her Facebook page.

I also recommend reading this more recent article on the ABLE Act,l on the MSNBC website. 

The bill still seems to be promoted mostly as a solution for parents of disabled children, which it is … but that’s not all it is. It is worth remembering some key aspects of the ABLE Act:

- In addition to being tax-free, ABLE Act savings accounts would allow people with disabilities to set aside savings above $2,000, up to $100,000, without losing eligibility for benefits like SSI and Medicaid.

- Savings could only be used for disability-related goals, not everyday living expenses. However, these funds would be more flexible and less restricted than Special Needs Trusts or PASS Plans.

- The law would also allow self-directing adults with disabilities to set up and manage their own accounts, without needing a third-party trustee or manager. They could accept gifts from others to build their accounts, but also deposit some of the money they earn in jobs, which would then not be counted as monthly income, helping preserve benefits eligibility. This would help reduce work “disincentives” … the common situation where people with disabilities hold back on work and promotions because they can’t afford to lose key benefits.

The ABLE Act has broad, bipartisan support in Congress. It looks like it is on a path to being passed in the House and Senate in September. In a situation like that, the most valuable thing for advocates to do is to contact their Senators and Representatives and urge them to keep up the pace. The bill seems unlikely to face opposition, but even a popular bill can fade from apathy.

Call your members of Congress. Don’t let them forget about the ABLE Act!

Thursday, July 24, 2014

Open Thread

I am going to be very busy today with life stuff, so I thought I’d try an Open Thread. This is where a blogger publishes a post without actual content, purely so people can discuss whatever they want in the Comments section of the post. I’d like to keep it disability-related, but obviously that covers a lot of ground, so … what’s on your mind? Add your comments below!

Wednesday, July 23, 2014

More On The CRPD

Anne Laurie, Balloon Juice - July 23, 2014

Here is a mainstream take on the UN Convention on the Rights of Persons with Disabilities. By mainstream I mean not from a disability advocacy group. It is, obviously, from a fairly liberal, Democratic blog. Still, liberal blogs don’t always quite get the point on disability issues, even when they're on the right side. This post doesn’t say much about the disability aspect, but it does, correctly I believe, identify the real problem, which has nothing whatever to do with disability, and everything to do with right-wing, “black helicopter” paranoia. I hate to be pessimistic, but how do you fight that?

Digging Up Disability History

Elizabeth Picciuto, The Daily Beast - July 22, 2014
"The moral arc of the universe may indeed bend toward justice, in disability as in race, gender, and class—but that arc doesn’t flow smoothly: It contains many hills and valleys.”
I have seen several versions of this story about the skeleton of a person with Down Syndrome, dated to the 5th or 6th century A.D. Most of the references present as established fact the idea that because the child was buried the same way, with the same burial rites as others in her clan, it shows that people with Down Syndrome were fully integrated, valued members of their communities, even in the “Dark Ages”. Even though this article acknowledges how little we really know about ancient attitudes towards disabilities from such sparse evidence, I still find this new evidence tantalizing.

book cover of History Of The World, Updated, by J. M. Roberts
A few years ago, one of the first audiobooks I listened to was History Of The World, Updated, by J. M. Roberts. In one of the early chapters, Roberts mentions that archeologists had found the prehistoric remains of a man who appeared to have had a physical impairment. Yet, he also appeared to have died fairly old. Roberts speculates that the man probably had to be sustained by his clan, and indeed, this man, too, seemed to have been buried surrounded by gathered flowers and nick-nacks … indicating that the people of that age were more than just beasts that looked human. They were, just maybe, compassionate and sophisticated in their understanding of human value.

photo of a marble bust of Roman Emperor ClaudiusAt the other end of the historical scale, the article refers to the fact that in the 1800s, people with disabilities were quite often integrated into their communities, and only separated and institutionalized later, during the “Progressive Era”. In fact, how the well-meaning “progressives" of the early 20th century dealt with disability is an important reminder of how good people throughout history often get things wrong … sometimes terribly wrong … and confuse altruism and charity, with prejudice and condescension.

Were institutions and "state schools" for disabled people created to protect us from society's harshness and cruelty? Or, were they really meant to get us out of the way, out from under foot, so to speak. Probably both.

Finally, I think again of my favorite disabled person from history, the Roman Emperor Claudius, who historians believe had cerebral palsy and epilepsy. We will probably never know exactly how extensive his disabilities were, or the degree to which he was stigmatized. Yet, once again the shreds of evidence are tantalizing.

I would like to know more about disability in ancient and prehistoric times. Does anyone know of any other studies, articles, or books on the subject?