Throwback Thursday

The time machine from the film Time Machine

One year ago in Disability Thinking: "Advocacy Or Fundraising ... Demanding Or Asking?"

I still think a lot about why, when faced with systemic barriers, some disabled people seem to turn naturally to advocacy, while others turn just as automatically to a more personal, charity approach. Certainly some situations call for one or the other approach, but I do think a lot of it has to do with personal temprement. I also think we have to remember that in general, there are more immediate social rewards for disabled people who articulate their needs in more personal terms, and "ask" for help. The most effective and famous activists get praise too, at least within the activist community, but on the local level, disabled people who assert their rights instead of asking for favors tend to be viewed as cranks, malcontents, and troublemakers.

Two years ago in Disability Thinking: "Albany Protest Update"

The ADAPT protests in Albany worked out for the best, in the end, but home care rules and funding tend to be a flashpoints every year about this time ... here in New York State at least. Right now, home care and independent living activists are trying to get the NYS Legislature to add enough funding in this year's budget to meet the new, higher minimum wage for home care workers. It's important that they do so, for the home care workers of course, who need and deserve a living wage ... but also for the disabled people they serve, who will lose hours of care if the budget isn't increased. The fight never ends, but it's a good fight, for exactly the type of care disabled people actually want.

Three years ago in Disability Thinking: "Money, That's What I Want"

Then again, it's always good to remember that the best, most adaptable disability program possible is probably cash. We can buy literally any service, device, or assistance we might possibly need, and dollar bills never try to tell us what we need and what is or isn't good for us.

Thinking Today

Illustration of a head in profile with four colored gears inside representing thought

I've said this before, though I don't know exactly where, so I feel justified in saying it again. If you want to know what it feels like to navigate everyday life with a physical disability, think about the last time you spent a day or more in air travel.

First of all, you can do it. It's not impossible. You can also have a good time doing it, and the payoff can be fantastic. However, it is tiring, there's lots of planning required, and if one small thing goes wrong or something isn't what you were assured it would be, it can quickly make the whole experience exponentially more frustrating and exhausting. Also, the central feature of the experience is that you are very much at the mercy of a glitchy system that you as an individual have almost no power to control in the moment.

That's what everyday errand-running is like for many if not most people with physical disabilities. Like I said, it's not unrelieved horror. There's no reason to feel sorry for us. But it is tiring and stressful, and we have to do a lot more delicate planning than most people do in their everyday lives. And when barriers crop up, like inaccessible buildings or no parking spaces, it's almost unbelievably draining ... just like air travel.

Weekly Reading List

Two rows of multicolored books

Another week of disability reading ...

Olivia Wilde’s Down Syndrome PSA Gets It So Wrong
Emily Ladau, The Daily Beast - March 21, 2016

The Problem With The New Down Syndrome PSA Starring Olivia Wilde
David Perry, The Establishment - March 21, 2016

Even the harshest critics acknowledge that the creators of this Down Syndrome awareness video meant well, but it gets awfully tiring seeing the same kinds of messaging missteps occur over and over again. It seems so obvious to us what's wrong, why can't these other people, who are our allies after all, just get it? This "How do you see me?" PSA is a particularly vexing example. I think part of the problem is that the whole concept of "erasure" comes so naturally to mind once you are attuned to it, but seems utterly foreign and obscure if you are not. Ultimately, I think the best explanation for it is to show a better alternative, like the one David Perry found. That video has it's own problems with questionable messaging, but at least it shows a happy, interesting person with Down Syndrome, who has a real and distinct personality, instead of one who's self-image seems entirely shaped by their perception of "normal" people, and translated for us through the perceptions of non-disabled people. The Olivia Wilde video is more than "problematic." It is a missed opportunity.

A Young Man With A Disability Goes Missing. How Do You Find Him?
Wendy Wolfson, National Public Radio - March 20, 2016

This seems like a much bigger dilemma than it needs to be. Let's say an adult son or daughter with intellectual disabilities, living on their own with some professional support, "goes missing" for a day or two. Why not allow the police to go into missing person's mode a bit more quickly than usual, but only so they can find the person and make sure they're okay? Then, they could ask the person if they need help or if they want to be in touch with their families. If they say "no", the police could go back to the family and report that their loved one is fine, but wants to be left alone. If the person turns out to be in serious, immediate trouble, the police would intervene, just as they would seeing any person in obvious danger. Otherwise, they can do a search and a check-in, but leave the rest up to the disabled person's discretion. That seems more sensible than either doing nothing, or automatically prioritizing families' anxieties over the right of disabled adults to make their own decisions, even foolish ones.

Doctors are more likely to misdiagnose patients who are jerks
Julia Belluz, Vox.com - March 19, 2016

This article doesn't mention patients with disabilities, and identifies the people who get poor medical treatment due to doctor dislike as "jerks." The thing is, having complex, unusual, and mostly un-fixable disabilities tends to make us jerks in medical situations. We can't do things the way doctors and hospitals are used to doing them. What's normal for others isn't normal for us. We throw everyone's routines and calculations off. We are hard to satisfy. We complain a lot because a lot of things go wrong with us. Without getting into value judgements on either side, disabled patients are, almost by definition, "jerks." This is one of the reasons why disabled people have such mixed relationships with the medical profession. The article suggests that patients should try not to be jerks, whether or not doctors and nurses make an effort to be more tolerant of jerks. That's probably good advice from a personal survival standpoint, but it can be a problem when you are disabled and may not be able to be less of a jerk, because in our lives, being a jerk is sometimes a survival tool in itself.

DC’s Next Superhero Spin-Off Should be Birds of Prey
Keith Chow, The Nerds of Color - March 18, 2016

I am no kind of comic book fan, but I did watch the short-lived "Birds Of Prey" TV show, and sort of liked it, at least partly because of the character Oracle ... Barbara Gordon in a wheelchair. I'd like to see someone give the show another try. Casting an actress with disabilities would be a big help, but I'd also like to see a little more digging into the character's adjustment to disability, along with more evidence of her mobility and overall capability. If they can pull off some deep, soul-searching character development without being maudlin or sentimental, they'd really have something.

Who's Responsible?

Blue circle with white icon of a pillared government building

Iain Duncan Smith quits over planned disability benefit changes
BBC News - March 19, 2016

Let’s step back a bit from the specifics of this situation, in which Ian Duncan Smith, the United Kingdom’s Minister for Work and Pensions, resigned yesterday, seemingly to protest further cuts in monetary assistance to people with disabilities. Let’s step back, as I did yesterday after reading about this, and think about what’s unusual and significant here.

First of all, a cabinet-level government official resigned at least partly because he disagreed with the way a disability policy was being handled.

Second, even if he had other reasons, such as petty political infighting or disagreement over another issue entirely, the reason he gave for resigning was the disability cuts.

Third, as far as I can tell, Ian Duncan Smith isn’t an obscure government official, he’s a household name in the UK. His resignation is a big deal, and not just to the disability community.

That says something about disability issues. They are not just important to disabled people and people who specialize in the field. Disability issues can be important enough to trigger real political crises, including firings or resignations, when government disability policies goes pear-shaped. It is an indicator of the importance attached to disability policy in the UK that this has happened. Issues regarded as less important and more narrowly specialized don’t tend to prompt firings or ruin peoples’ careers, because few people really care about them.

Which got me thinking … who is responsible for disability policy in the United States government? Who would we be fired, or resign in protest, if terrible things were to happen to disability policy in the US? If there are such people, would anyone know their names outside the disability activist community? Has anyone in the U.S. government ever been fired, or resigned in protest, because of botched or immoral disability policy? Shouldn’t there at least be someone in the federal government who has to take some kind of overall responsibility not just for communicating with the disability community, but for the success or failure of disability policy throughout government?

I posted some of those questions on Twitter yesterday. One person replied that Gen. Eric Shinseki left the Veteran’s Administration under a cloud, largely because of the massive backlog of unprocessed veterans disability claims. That sort of counts, but it only affects veterans, not the whole disability community.

I also chatted about this a bit with Greg Beratan, one of my #CripTheVote partners. I said that the UK story got me thinking, really for the first time, that it might be good to have a high-level post in the federal government to oversee all disability policy across all government departments. That way, not only would we possible get better coordination and clearer, more consistent thinking about disability policy, we’d also have someone to either praise or blame when disability policies go pear-shaped. I still think that’s worth considering, although Greg pointed out that might tend to let other departments off the hook on disability matters. I would hate to see a situation where everyone else in government handed all responsibility for access, accommodation, and policy-making over to one person or a poorly-funded office with inadequate power. A disability “czar” sounds good in a way, but it also could easily become a fig leaf.

The closest we have now to some kind of central authority on disability matters in the federal government is the National Council on Disability, but it’s mission is to make recommendations. It has no authority to plan, direct, or enforce disability policy. In the past few Presidential administrations, there has also been one or two White House staffers whose job is to be a liaison to the disability community. That’s been valuable, but it’s more of a communication thing, not an office we can hold responsible for how the government deals with disabled citizens and disability-related programs.

So far, the disability policy idea with the most votes in our #CripTheVote Disability Issues Survey is, “Hire and appoint more disabled people to government and policy-making positions.” That’s not quite the same thing as putting one person in charge of all disability policy, but it sort of relates. Maybe there is an untapped desire in the disability community to bring some order and unity to the U.S. government’s scattered, fragmented disability policies. Putting it all in the hands of some clearly identifiable people with life experience of disability might make disability policy better in the long run. It might also raise the profile of disability in government. And it might well help focus the disability community’s advocacy efforts if there was one office we could turn to, in partnership or, if necessary, in anger … someone to hold responsible, whether for good or for ill.

One other problem though … who in the disability community would want to have such a job?

Thinking Today

Illustration of a person's head in outline profile, with colored gears inside the head, representing thoughts

When I was first starting out in disability rights as a summer employee at an Independent Living Center in 1990, I read a monograph by someone in the Independent Living / Disability Rights field on whether or not IL philosophy really worked for people with intellectual disabilities. Ultimately, the answer in the piece was, “Yes, of course!”

However, the way it was written made it very clear that it was still very much an open question whether IL principles were applicable for people with intellectual disabilities. I think about that a lot when I see debates and flame wars between disability rights activists and some parents of disabled kids, as well as some professionals in the “developmental disability” field. The movement itself is pretty much settled on the idea that people with all kinds of disabilities have basic rights, that all should be assumed to have personal agency, and that everyone can and should be able to exercise meaningful choice in their lives, even if they need support to do so.

On the other hand, I think it’s important for those of us who believe this to revisit the question once in awhile, because lots of people still assume that mental and intellectual disabilities are completely different from physical disabilities. Many, many people … including some people with disabilities … really don’t see paraplegics, blind people, autistic people, and people with Down Syndrome as part of the same community at all. And it’s not just a personal hangup or fear of stigma. Some people really believe that applying the same fundamental rights and guiding principles to all of us doesn’t make sense. It's one of the reasons you see parents saying that an activist in a wheelchair can't have valid insights into the life and problems of a severely disabled, nonverbal, or "low functioning" person. That's wrong. It rightly shocks and offends us. But we should at least keep in touch with why people think that way, and not just condemn them out of hand.

Throwback Thursday

Illustration of the time machine from the movie "The Time Machine"

One year ago in Disability Thinking: “TV Notes”

A year later, I do feel differently about “cripping up,” a term for when non-disabled actors play disabled characters. The practice still doesn’t ruin a show or movie for me all by itself, but I now think it’s more than a social justice issue. I think it tends to make whole productions worse, or less good, when disabled characters are played by non-disabled actors.

I’m also still way behind on my TV-watching.

Two years ago in Disability Thinking: “Another Rant On Positivity”

Wow, I forgot all about this post. It was sort of an early take for me on “inspiration porn,” even though I didn’t call it that. What still stands out about this particular story was that the disabled person seems to have been misquoted. The headline says she said something very “inspiration porn-ish,” but maybe she just plain didn’t! In any case, I’m pretty happy with my analysis here. It might help me with a new post I want to do pretty soon … another, more thorough deconstruction of “inspiration porn.”

Podcast Preview: Ironside

Collage of Ironside TV show imagery, text: Raymond Burr in Ironside - music composed & conducted by Quincey Jones

Episode 31 of the Disability.TV Podcast will upload on Friday, March 25. I’m going to title the episode, “Chief Ironside: Peer Counselor.” It will focus on my favorite episode of Ironside, the remarkable late ‘60s, early ‘70s police drama featuring a main character who uses a wheelchair.

Join me as I revisit “Light At The End Of The Journey.” It’s one of the few Ironside episodes in which Chief Ironside’s disability is an important part of the story. It’s also an extremely rare example of a TV show in which two disabled people interact, and where a disabled person motivates another disabled person’s development.

In addition to exploring why I like this particular episode so much, I’ll try to talk through why I keep coming back to the Ironside series, which is so stylistically dated and in some ways insubstantial, at least compared with much of today’s “prestige TV.”

As always, the podcast will be full of spoilers, so if you have no idea what Ironside is, or if you don’t remember the episode, I suggest watching it free on Hulu.

For a preview of the things I’ll be talking about, you might want to read this blog post I wrote about a year ago:

“This chair is my white cane. Where’s yours?”
Andrew Pulrang, Disability Thinking - March 21, 2015

Ironside is also the first TV series I talked about on the Disability.TV Podcast. The episode is a bit long and the quality isn’t that great, but it explains a bit of my history with the show, and why I believe it still stands as one of the best depictions of disability on television.

Here’s the episode:
Disability.TV - Ep. 2, Ironside (Original)

Weekly Reading List

Picture of two shelves of multicolored books

I have been reading a lot of election articles, which I tend to work over through my #CripTheVote involvement rather than here in my Weekly Reading Lists. That’s why I didn’t post one last week. I haven’t stopped reading other things though. Here are some interesting disability pieces I read over the last week:

The little girl who crawled up the Capitol steps 25 years later: Jennifer Keelan and the ADA
CP Daily Living - July 24, 2015

This is a fascinating and, frankly, rather depressing followup to a famous incident in the disability rights movement. I say sad only because of how difficult life has been for Jennifer and her mother, after they gave so much for our movement. The core of the story stands though as a rare example of a genuinely “inspiring” story of disability that doesn’t rely on sentimentality, condescension, or low expectations.

Teaching Self-Advocacy
Anna Stewart, Esme - unknown date

In some ways, the advice here is pretty basic, standard self-help fare. But it’s mostly really good advice, and probably revolutionary to a lot of families with disabled kids.

A Woman On A Bus
Dave Hingsburger, Rolling Around In My Head - March 13, 2016

Boy it’s hard to describe how “positive” things non-disabled people say to disabled people can be depressing to us, even sort of ableist. Dave does a great job describing those contradictory but completely valid feelings we have in so many of those fleeting, everyday encounters. It’s better than being ignored or degraded, but it still gets wearing after awhile.

I’m Disabled, but My Body Still Belongs to Me
Karin Hitselberger, Claiming Crip - March 11, 2016

This article didn’t turn out to be about what I thought it was going to be about. Karin is talking about the unspoken deal we supposedly have with people who give us fundamental everyday help we really do depend on. The deal is that they help us live a life by providing raw physical assistance, and part of the “price” we are supposed to “pay” is allowing our helpers to be, or feel like they are, our supervisors as well. Not having assistance at all is much worse, of course, but it’s really, really hard and rare for disabled adults to find sound personal assistants who really, completely treat us as fully sentient adults.

Cuts 'will see 200,000 disabled people lose £3,000 a year'
Anushka Asthana, The Guardian - March 13, 2016

Scrap fit-for-work tests for disabled, says Government adviser
Press Association, The Daily Mail - March 11, 2016

So far, we have been fortunate in this election year here in the U.S. not to have to content with major assaults on our most basic income support programs … in particular, Social Security Disability and SSI. Rand Paul tried to make a thing out of it early on, when he tried to tap into voters’ doubts about who is “really” disabled and whether SSDI might be wasteful in some fundamental, structural way. In the UK, the issue has been much more explicit and has moved from campaign issue into full implementation. What frightens me most of all is the prospect of budget-cutters teaming up in some faux bipartisan way with those of us who would like to see these programs reformed to encourage employment. That seems to be what’s happened in the UK, and it’s not going well at all. Maybe it’s self-serving, but my instinct is that redesigning Social Security to encourage more disabled people to work should end up costing more, not less. It’s hard to imagine anything like that happening here anytime soon.