Sunday, June 30, 2013

Music For A Sunday Evening

The Dandy Warhols cover Eddie Cochran

The weather is pretty nice today where I am, but out west it's HOT. These guys look kind of sweaty, too. And stoned. The comments for this AV Undercover video were pretty harsh, but I really like this downbeat version.

"The Onion" Nails It

Lucky Old Woman Getting Wheeled Around Airport
The Onion, June 28, 2013

True, absurd, and sadly understandable.

My particular disabilities put me in a sort of in-between spot in airports. I can walk, so given unlimited time and places to sit and rest along the way, I can get to and from my gates without wheelchair assistance. The problem is that I'll end up a puddle of oxygen-depleted mush. If the physical drain on the average non-disabled person navigating an airport is a 6 or 7 on a 1 to 10 scale ... tiring and unpleasant to be sure ... for me it's like 12. However, when I do ask for wheelchair assistance or ride one of those electric carts, my effort goes down to something like 3. So technically, it is easier for me than it is for most others when I use assistance. It's just that it would be much greater if I didn't.

That's not true for every person with a disability in every situation, but I think it is true for quite a few of us. Which is partly why we sometimes feel guilty about taking assistance or using disability accommodations, even though we shouldn't feel bad about it at all.

Saturday, June 29, 2013

Awesome Sauce - ASL Edition

How Do You Say Shaolin in Sign Language? ... Meet the interpreter who has signed for the Wu-Tang Clan, Killer Mike, and the Beastie Boys.
Amy K. Nelson,, June 21, 2013

Not much to add; the story mostly speaks for itself. Via Media dis & dat.

Actually, I'll add one thing. The awesomeness here isn't that a Sign Language Interpreter thought to interpret live rap performances. I expect that goes on quite a lot, maybe more than the article would suggest. What made me smile is how the performers themselves are first amazed and transfixed, then so respectful of the interpreter's skill and professionalism.

YouTube clip via bunnika's tumblr.

Friday, June 28, 2013

More About Rep. Duckworth and Who's Disabled

Tammy Duckworth's Impassioned Shaming Of A Faux-Disabled Vet
David A. Graham, The Atlantic Monthly - June 27, 2013

Jake Miller, CBS News - June 26, 2013

Marc Herman, Pacific Standard Magazine - June 27, 2013

The more I read about this, the more clear it seems that Mr. Castillo's "30% disabled" status really is bogus. And even if he did injure himself in military prep school in a way that still causes him some pain, his disability is only "service-connected" in the most bureaucratic possible sense.

These articles also do more to emphasize that part of the outrage is about the nonsensical way that Rep. Duckworth's disability is rated compared to Mr. Castillo's. So, there are probably two scandals here ... Mr. Castillo misusing a poorly-designed disability determination system for personal gain, and the fact that the system itself is so poorly designed to begin with.

So yes, her anger is understandable and probably justified. But the systemic confusion over how to determine who is disabled and who isn't just underscores how risky it is for individuals ... even individuals with disabilities ... to call people out for faking. I was thinking about how Rep. Duckworth could have mitigated this, and although it's also kind of annoying when pundits and bloggers say, "What she should have said is ...", I'm going to do that a little bit.

If she had prefaced her questions and comments by acknowledging that it's often hard to spot a disability faker, and that people have very serious disabilities you can't see, and then went on to underscore that the evidence is overwhelming in this case, I think the whole incident would have been less troubling, at least for me.

Thursday, June 27, 2013


Smart Ass Cripple got me good. He's always funny and he really does seem to know all the interesting "cripples". My lack of commitment in high school Spanish class helped, too. But, in the era of Google, jokes like this just can't last.

Because I'm a pedantic nit-picker, I'll also say that he was a bit out of date in his characterization of disabled sports. I think now that most people picture the Paralympics more than the Special Olympics. Though maybe he was joking about that, too.

I think she's right, but ...

Rep. Duckworth is getting a lot of praise and some criticism for calling out a man who apparently exaggerated a possibly minor injury that was by no normal mode of thinking service-related in order to gain advantages in federal contracting. I qualify these statements because I'm very uncomfortable with one aspect of Rep. Duckworth's condemnation.

To be clear … I think she's probably got it right about this particular guy. My instinct, too, is that he cynically used a fairly minor injury in order to exploit a loosely-structured program for his business' benefit.

However, I think it is damaging in completely different ways when one group of people with disabilities goes after another, comparing the relative severity and pain of disabilities, and especially when they go after people who "look fine", as if they must be cheating. I think it is almost more important to teach people not to judge disabilities on outward appearance or superficial evidence, than it is to catch real cheaters. The bottom line is that watching this video clip, I can't tell whether or not Mr. Castillo is in pain, or how much pain. His claim that he can't play with his kids is almost certainly ridiculous ... and yet, how do I know?

What makes the difference in Rep. Duckworth's favor here … just barely … is her ultimate point. When a handful of people really do cheat, it damages the credibility and viability of entire programs.

Still, I cringe whenever I see self-appointed disability police deciding who is and who isn't sufficiently disabled. That is a dangerous road.

UN Convention ... Try Again?

United Nations building
I got an Action Alert today encouraging everyone to contact their Senators and urge them to revive US ratification of the United Nations Convention on the Rights of Persons with Disabilities. Last December, the Senate voted down ratification, mainly because a significant number of Republican Senators either felt or were convinced to feel that the UN convention would have unintended consequences, mostly for parents of children with disabilities.

Specifically, a handful of conservative groups claimed that the convention would threaten parental authority and home schooling, citing a line stating that "the best interests of the child shall be a primary consideration" in whether the rights of children with disabilities are being respected.

I've started reading the convention from start to finish, and when I'm done, I'll write more if I have anything to add. My initial sense is that objections to this disability rights convention isn't about the convention itself; most of the people who oppose it oppose the United Nations itself, and many of them have a massively inflated conception of the UN's practical power.

As I read, it also seems like there are many, many more sections and provisions that would help preserve family rights and protect family integrity … that should, in fact, appeal even more strongly to conservatives than to progressives.

Finally, I really think that with UN human rights initiatives, you have to think in terms of countries where traditions and practices may be very, very different from ours. We think we're divided on moral, family, and sexual values here in the US, but compared with the world at large, conservatives and liberals here in the US are actually pretty much on the same page. I'm not saying we are vastly more moral or ethical in the US or "The West", but I do think that the disability rights standards in the UN convention are far, far more of a practical challenge in some countries and cultures than to American society.

So yeah, more specifics to come.

Wednesday, June 26, 2013

Music For A Wednesday Evening

This was a big surprise the first time I saw it. The calm coolness of the band blends beautifully with the singer's passion.

"Inspirational" Ideas

I just had two thoughts about how to deal with non-disabled people calling people with disabilities "inspirational" just for doing ordinary things:

1. Yes, in a way it is inspirational that he / she is able to … (have a paying job, drive a car, live independently, etc.) … but it shouldn't be inspirational. The only reasons it is inspirational is that there are still so many unnecessary barriers that prevent a lot of people with disabilities from doing these ordinary things. Are you willing to support policies and practices that make these things "expected" rather than "inspirational"?

2. Let's create an agreed-upon list of people with disabilities who are "inspirational" in a more profound sense … people who far exceeded expectations and helped others do the same, who helped make the world a better place for all people with disabilities. Nominees? Ed Roberts comes to mind, but I'm sure there are more and that there would be a lot of deliberation about it, like there is for other "hall of fame" type lists for other topics.

More On Sheltered Workshops

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I think the "30 Rock" story … the people interviewed, how it was filmed, and especially Harry Smith's pro vs. con comments at the end … laid out the issues pretty well for what had to be an audience that mostly had never heard of there being any controversy about Goodwill Industries or other sheltered workshops.

The only thing that frustrated me is that they never adequately dealt with the argument the Goodwill CEO kind of put forward, that by their definition at least, most of the workers they employ are significantly less productive, because of their disabilities, than non-disabled workers. In other words, the sheltered workshop argument is that this is NOT an "equal pay for equal work" situation. It is not equal work, which is why the pay is below the usual minimum wage. The alternative, by this interpretation, is for these folks to have no job at all, because "normal" workplaces have assume that everyone is at least in the same ballpark in terms of qualifications, productivity, and quality.

The advocate from the autism group makes a decent point that all workplaces have inefficiencies and good and not so good workers, but they still have to be paid at least minimum wage. But this only partially answers the productivity question. What the Goodwill CEO was trying to say, diplomatically I guess, is that these workers aren't just slightly inefficient, like what you're used to in an average workplace … they are fundamentally less productive, will never be more productive, and so it's a blessing for them to have a job at all.

That's it. That's the only real argument they have. And it's been persuasive since the 1930s, because that is the basis of the law that makes paying these disabled workers less than minimum wage.

By the way, when the Goodwill CEO mentioned "elitists", he was invoking long-standing divisions and disconnects within the broader disability community. I remember many times discussing this sort of issue with people who worked mostly with people who had cognitive impairments. One of the most common arguments they made was that my standards of fairness were all very well for people with my kind of disabilities, but didn't apply to people with significant cognitive disabilities. In effect, they were saying that they understood that a sheltered workshop would be totally inappropriate for me, but that I failed to understand that it is appropriate for some.

I could almost buy that, except that in practice, most sheltered workshops aren't that picky about who they "employ", and have plenty of people "working" in them that could get and keep a mainstream job, given a little ingenuity, support, and training aimed at advancement, not treading water.

What clinches the argument here is that more and more sheltered workshops have already been closed, with resources transformed to provide extra support to people doing meaningful work in mainstream community jobs, for minimum wage or above. This includes not just the so-called "high functioning" people, but people with more severe disabilities.

Basically, I think Harry Smith summed it up very well when he suggested that this is simply an out of date model that's long overdue for an overhaul.

It would be great if NBC did a followup story showing how other models, like supported employment do a better job for the same kinds of people.

A few more thoughts:

- Families of people with disabilities who are in these sheltered workshops do often support and defend them, but their concerns and perspectives aren't always the best for their adult "children". Many, though not all parents prioritize stability, certainty, and perceived safety over almost all other goals, including fair pay, fulfillment, and what the individuals actually want.

- The CEO salaries thing ... I usually think that arguments about CEO salaries are overblown, at least in terms of impact. Cutting a CEO's salary in half, or quartering it, usually wouldn't make that much of a difference to the average workers. However, in this case, the difference is so extreme that I think radical change is in order, and might actually be possible.

- The blind woman interviewed, who used to work at a Goodwill sheltered workshop, said that her low wages barely even paid for her transportation to and from work. When our local sheltered workshop agency stopped providing van rides for sheltered workshop workers, my agency got lots of calls from counselors who were trying to figure out how to get "their clients" to and from "work" in an affordable way ... and they explicitly made the same point. For some, it cost more to attend than they made in wages. This was the counselors talking ... employees of the very same organization. My point: pretty much everyone involved knows the system is at best deeply flawed and nonsensical.

- For what it's worth, the State Vocational Rehabilitation in my state made a policy change a few years ago in which placing a person in a sheltered workshop would not longer be considered a final, successful job "placement." This is important, because the number of successful placements is how everyone in Voc. Rehab. is judged. So there's no longer an incentive for counselors to shove all their "difficult" cases into sheltered workshops. They may place some people in sheltered workshops for short-term training, but only with the expectation of eventually moving out into a regular job.

Tuesday, June 25, 2013

NBC Looks At "Sheltered Workshops"

Disabled workers paid just pennies an hour – and it's legal
Anna Schecter, Producer, NBC News - June 21, 2013

Last Friday, the NBC primetime news program Rock Center did a story about sheltered workshops, and the labor law provision that allows them and similar organizations to pay certain workers with disabilities less than minimum wage. I didn't see the show, but I have read the accompanying article on the NBC website, and I'll watch the segment online shortly.

The disability organization I worked for never had sheltered workshops, and in fact Centers for Independent Living uniformly opposes them. However, there are a few sheltered workshops in my area, and we often assisted people who worked at them. My take on the issue has always been that they are at best a relic of an earlier time, and at worst genuine exploitation. Unfortunately, I think that most of the criticisms against sheltered workshops and paying sub-minimum wage leave out some important aspects that both help explain why such a seemingly unfair system ever got approved, and how the system could be changed without unintended negative consequences for the workers.

I'll have more to say on this later today, or maybe tomorrow after I do some more thinking and reading about it.

Monday, June 24, 2013

Says Peter Dinklage

20Q Peter Dinklage
Eric Spitznagel, Playboy Magazine - May 2, 2013

The whole article is good reading, but here's the "money quote":
Playboy: "You are aware that you're a sex symbol, right? Some might even call you a DwILF."
Dinklage: "DwILF, as in Dwarf I'd Like to Fuck? That's very clever. Honestly, I think there's an irony in all of this. I take it with a grain of salt. They'll say, "Oh, he's sexy," but women still go for guys who are six-foot-two. It's nice that people are thinking outside the box, but I don't believe any of it for a minute."

School's Out

stick figure graduate standing next to stack of books
Today is the first day of Summer Vacation in my local school district. I wonder what the kids with disabilities are going doing this summer. I also wonder what's next for the students who graduated or "aged out".

One of these days I'll describe my school experiences, but not now. My thoughts about education and students with disabilities are mostly based on things I saw and learned about when I was working at our local Independent Living Center.

Let me start by saying that I met a lot of really great teachers and counselors who all wanted the best for their students. My issues with education, especially "Special Education", are systemic and ingrained ... a culture, really, that reshapes individuals more than individuals shape it. At least in our area, we seem to have more than our share of really good, decent, dedicated and forward-thinking teachers.

What disturbed me most in my encounters with education was the feeling ... hard to prove anecdotally ... that there are at least a few really smart kids with disabilities in each district who are unrecognized and wasted by a system mostly geared towards remedial work, behavioral control, and maybe, if they are lucky, some life skills training. History, literature, math, science, critical thinking, philosophy? Maybe, if we have time. It's like Special Ed teachers actually buy into and endorse the petulant teenagers lament about academics, "When am I ever going to use this?" To them, it seemed, diplomas and degrees really are just gate-keeping pieces of paper.

At conferences, any comments or questions I posed about maximizing academic aptitude and achievement were treated like they were embarrassingly off-topic ... met with polite nods and silence. I felt like a peacenik at a NATO summit; theoretically we had the same goal, but with vastly different assumptions, priorities, and tactics.

By the way, that analogy includes the very real possibility that as the "peacenik", I was being sadly naive.

Saturday, June 22, 2013

Early Evening Music

The song, written by Jeff Magnum of Neutral Milk Hotel is widely interpreted as a reference … either loose or very specific … to "The Diary of Young Girl" by Anne Frank.

I accept that interpretation, but to me, on some elemental level it feels like a disability song.

"Two Headed Boy" originally appeared on the album, "In the Aeroplane Over the Sea". It is one of a handful of albums that when I listened to it for the first time, I listened all the way through, stunned, and then immediately listened to all of it again.

I like Dresden Dolls, too, but a little of them goes a long way.

Steven Soderbergh I Am Not

cartoon stick figure working with film
I've started working on a montage of disability-related video clips to put on the front page of the eventual "Disability Thinking" website. So far I have collected 46 clips of various lengths that I'll need to edit down to something like 5 minutes. Most of the clips are from TV shows and movies, with a few TED Talks and Paralympics clips thrown in. I'm not sure what I want the montage to say; I'm trusting that after sorting out the best bits, some kind of theme will occur to me. I'm just a little bit worried that after hours of work, the little movie will turn out trite or syrupy, instead of fresh and a bit funny.

With disability images ... both still and moving ... the line between awesome and ugh is very, very thin.

Thursday, June 20, 2013

Two Cool Tumblrs

From too brain fogged for this:

This is the best explanation of ableism I've read in months. Here's a piece of it:
"Ableism is more than just not being an outright douche.  It’s about considering what disabled people will need."

Well, there goes the rest of my day. If anyone needs me, I'll be exploring this amazing-looking website by the Smithsonian Institution.


Philip Caulfield, New York Daily News - June 20, 2013

Okay, if Mom thinks the new photo is better than the first, who am I to quibble? Her son is on longer waaaay off to the side in his wheelchair. Now he's in the front row, with his classmates, with no wheelchair in sight. Much better.

Miles is 7 years old, so I'm guessing it's unrealistic for me to think that he might wish to be shown in his wheelchair, just closer to the group? He's probably too young to be hip to the intricacies of disability pride at this stage. Later on, he may learn about and ponder what it means to him that President Roosevelt hid his disability, and what it means now that after some intense debate, we finally have a statue of him in his wheelchair.

On the other hand, I do think it's perfectly reasonable to wonder why the news stories about this class photo thing don't appear to have any input from Miles, himself. He isn't quoted or even attributed.

I guess I'm saying that I'm not satisfied. I have this weird feeling that the school didn't really learn what they should have learned from all of this. It's none of my business, though. Sometimes the personal really does trump the political.

Wednesday, June 19, 2013

Simple Words

Smart Ass Cripple explains his "pit crew":
"Those are the people I hire to drag my ass out of bed every day, make my meals, do my laundry, scrub my toilet, wipe my butt, etc."
Best way EVER to explain the role of Home Care Aides / Personal Assistants in the lives of people with disabilities. It's pretty simple, yet for some reason, when I worked at an Independent Living Center, it was one of the hardest things to explain to people unfamiliar with disability issues. I wish I'd known about Smart Ass Cripple then, because "Pit Crew" would have saved a lot of time and awkward groping for words.

"Keep Calm ..."

Keep Calm It's Only A Wheelchair

The "Keep Calm, Carry On" thing is almost played out, but I do like this one. I saw it at Wheelchairproblems, tracked it back to Awesomesauce | c5roller, and found what might be the original at Apparelyzed.

3 Kinds Of Disability News

3 in Ohio accused of enslaving disabled woman, child
Michael Winter, USA Today - June 18, 2013

When I read stories like this, I find it hard to maintain much interest in whether people use the "right" words for disability, or whether all the restaurants are wheelchair accessible. I know all of these issues are important and connected to one another, but maybe it would be useful to think in terms of three main kinds of disability issues or questions:
  1. Dignity, identity, and discrimination.
  2. Polices, economics, and independence.
  3. Life, death, and unspeakable cruelty.
The first category might be termed the "academic" or "theoretical" realm, or the personal category, mostly involving how we see ourselves as people with disabilities, how society sees us, and how these factors add or detract from our lives.

The second group of issues are where disability intersects with more or less traditional politics, plus "bread and butter" issues like money, housing, education, and employment. It also includes issues like physical accessibility, access to technology, and legal rights.

The third type of issue is harder to define, but is the most visceral and … for good or for ill … the most sensational. It's the dark underbelly of society's polite befuddlement about people with disabilities. It's where frat bros yell drive-by insults at wheelchair users, where teenagers … and sometimes adults … bully people who look funny, talk funny, or act funny, and where people with disabilities are literally exploited, mostly because they can be.

It's tempting to say that while the third type of incidents still go on, the first two are unimportant, even trivial. I think they are all important, as long as we keep in mind that they are different kinds of problems … connected, but calling for a different kind of thinking and response.

Late Night Music

My objective has been to keep this blog "on topic" about disability. On the other hand some my favorite on-topic blogs … like Eschaton and Balloon Juice … include off-topic bits and pieces, like cat photos and music clips that I think actually enhance the more serious, topical stuff. So, here we go. I'm going to start by posting my favorite performances from the last four years of the "AV Club Undercover" project. Here's my first favorite from the first year:

Tuesday, June 18, 2013

Site Work ...

I'm working on the bigger website today. Actually, after starting on it this morning, one thing led to another, and I'm starting from scratch ... new server, new website platform, and hopefully a simpler kind of forum.

Funny how trashing two months of work can be freeing instead of frustrating. Feeling excited and focused here!

Monday, June 17, 2013

Dear Modern Manners Guy ...

Here is my letter to the Modern Manners Guy Podcast:

Dear Modern Manners Guy:

Could you please do a podcast episode on "Disability Etiquette?" Grammar Girl did a great episode of her podcast on appropriate language regarding people with disabilities, but what about manners and appropriate behavior? Is it okay to open doors for a wheelchair user? Can you pet a guide dog? Is it ever appropriate to ask a person about his or her specific disability?

I have worked in the disability rights field for over 20 years, and I have disabilities myself. So, I have my own ideas on questions of disability etiquette. There are also many guides out there. However, most of them, in my opinion, focus too much on specific rules and not enough on the principles behind them.

Modern Manners Guy, I'd love to get your take on this!

The Gang's Not All Here

The photo that broke a mother’s heart
Thandi Fletcher, The Province - June 14, 2013 (via Crazy Crip Girl)

I think "awareness" is over-rated as a word and as a concept. However, cases like this I think are very specifically about "awareness" … the lack thereof. Only the people there at the photo shoot know what actually happened, but I can easily imagine a depressing combination of harried, hurried teachers, antsy kids, and perhaps a subtly enforced lack of creativity and innovation … an adherence to "the way we do things" that stifled even the most basic ideas for including this cute kid properly in his class photo. Most of all, I suspect that it all hinged on the adults in charge never even thinking that maybe the kid would feel humiliated. He's in the photo, after all!

Also, there's this … the photo broke a mother's heart, but what about the kid's? Actually, my guess is that he's defending his teachers, wishes his Mom would just let it go, and is embarrassed by all the fuss. When he's 18 or so, he'll be angry in retrospect.

Again With The Theme Parks

Amusement Park Faces Backlash Over Disability Access
Shaun Heasley, "Disability Scoop" - June 17, 2013

This case is even more interesting than the Great Disney World Controversy. Here we have a theme park that seems to be trying to be helpful to visitors with disabilities in a more targeted, discreet, and fair way. Under their new policy, you have to wait like everyone else, but you can leave the line and go do other things until it's your time to enter the ride. In effect, it removes the physical aspect of the wait, leaving only a mental wait. It's a policy designed mainly for people with physical disabilities.

For people with certain cognitive or mental impairments, though, the problem isn't literally standing in line, it's the wait itself … the gap between the moment they decide to take the ride and the moment they're allowed to do so. There's a risk of stereotyping here, but it does sound right to note that people with autism, especially, might find it all but impossible to tolerate waiting, and incapable of making the mental adjustment necessary to say to themselves, "Well, at least I can go do something else until it's my turn." The parents complaining about the new procedure may have a point that the new accommodation simply doesn't match with that specific kind of disability.

But wait! Something called the "Autism Society" disagrees! They think the new policy is accommodating enough, and that having Autism shouldn't exempt people from waiting their turn. I don't know if they're right, or if they have the wrong idea about reasonable accommodation, but it's an interesting example of an important phenomenon … a disability organization with policies and philosophies that don't fully mesh with individuals with disabilities and, especially, their families.

Sunday, June 16, 2013

Maybe A Podcast

Television set with disability symbol on the screen
I'm thinking about starting a podcast about disability on television.

The logical starting point for what I want to make the podcast is to begin with weekly episode recaps of NBC's new, reimagined "Ironside", and "The Michael J. Fox Show, which are both set to debut in the fall. During breaks in these shows … or if one or both of them fail … I could recap selected episodes of the original "Ironside", the Sundance reality show "Push Girls", and do one-off special episodes on disabled characters in other shows … like the Deaf political strategist Joey Lucas on "The West Wing," Dr. Kerry Weaver on "ER", and of course as many as three characters on "Game Of Thrones": Tyrion Lannister, Bran Stark, and Hodor.

In terms of style, I'm thinking some combination of the exhaustive, scene-by-scene, snarky but appreciative "Downton Abbey" podcast, "Up Yours, Downstairs!", and the more compact, analytical approach taken by "Mission Log: The Roddenberry Star Trek Podcast". I love both of these podcasts. I'm amazed at the hours I can spend listening to them and barely notice the time pass. They have the perfect mixture of seriousness and snark. The hosts are fans of their shows, who love the shows as much for their failures and flaws as for their brilliance. I think I like podcasts better than the TV shows they cover.

Surely the world of disability television is wide and diverse enough that there will be plenty to say, appreciate, and sure … to mock. Now I just need a co-host. And, you know, a basic understanding of how to record, edit, and post a podcast.

Saturday, June 15, 2013

About Page Hits ...

This is my 102nd post. Blogger can tell me how many hits each post gets, and I've finally noticed that one post has vastly more hits than all the others … a post with the phrase "Inspiration Porn" in the title. Ergo …
  1. A large portion of my so-called hits are probably from various "bots", plus perverts.
  2. When I post on something really important to me, I should figure out a way to include the word "Porn" in the title.

Meanwhile, Across The Pond ...

PIPs won't help disabled people out of deprivation
The government's new disability benefit is based on an outdated medical model that cannot assess true needs or costs
Stef Benstead, The Guardian, UK - June 12, 2013

UK flag
I've been reading incomplete bits and pieces about how the Cameron coalition government in the United Kingdom is, apparently, completely redesigning its system of financial support benefits for people with disabilities. It seems fairly clear that whatever logical explanations and sensible improvements these changes might include, the 'bottom line" will result in significant cuts to individual benefits. I also read hints that some people might be dropped entirely, determined by "reformed" rules to not be disabled at all.

I really need to read more about this. Even though the new plan is being widely panned as a back-door method of simply cutting benefits, I'm more intrigued by hints that both the pre-reform and post- reform system might be a lot simpler and perhaps more empowering than the complex patchwork of benefits and programs we have here in the U.S. Of course, Great Britain has universal health care for everyone, which is a major difference with the U.S., where health care is still a major complicating factor for disability benefits and people with disabilities' aspirations. The other difference seems to be that UK assistance for people with disabilities relies more in a single, unified, and flexible financial benefit for each person … in other words, a monthly check … intended to cover all of their "special" needs, including perhaps adaptive equipment and personal care. If that's correct, it sounds like a much better system, and one we maybe should emulate here.

On the other hand, it also makes it easier to reduce support than it is in the U.S. Here, a cut in, say, Food Stamps or housing subsidy hurts, but may be compensated for by other benefits and supports that have their own sources, that have to be reduced individually, with separate legislation. Drawing all your eggs from one basket is simpler and more flexible, but if the basket suddenly has fewer eggs, there's no where else to go to make up the difference.

I wonder if American disability activists are watching what's going on with their compatriots in Britain?

Friday, June 14, 2013

This Is Big ...

... This is great!

Erika Niedowski, Associated Press / Boston Globe - June 14, 2013

… And according to the article, 24 states already have similar policies to eliminate sheltered workshops.

Ableism? Or Loss Of Privilege?

From a Wheelchairproblems tumblr post ...
"Hahahahha omg the ride from the airport to the hotel was so funny I can’t even. My stepdad thinks everyone is gonna kiss his ass and its just not like that."
I can only speculate on what exactly happened on that ride, but she might be hinting at something familiar to me: a somewhat privileged, sheltered person, used to being respected and treated well within a small community, suddenly exposed to how most people are treated when nobody knows who they are.

My Dad had an experience like that one time when he visited me. His car unexpectedly died, so he had to shop for a new one on short notice; he couldn't wait till he got back home. Although he had lived and worked here for decades, and was a widely known and respected physician here, he'd been away for over 15 years, so he was essentially a stranger in this town. When he walked into dealerships wearing his vacation casuals, they treated him like a random customer at best, at worst as a bum. It was a rude shock for him. He wasn't "Dr. Pulrang" anymore; he was just some guy, and kinda shabbily dressed to boot.

I've experienced something like this, too. Yes, I have disabilities, but most of the other metrics of my life place me well within the category of "privileged". For much of my life, despite some difficulties and disappointments, I was the sort of person with a disability who sincerely thought that the worst problem we face is people being too nice to us. You know ... condescension, baby talk, "you're such and inspiration."

I still haven't experienced much in the way of truly biting discrimination ... scores of failed job interviews, bureaucratic grilling, homelessness or opportunistic mugging ... but at 46, I've lived long enough to have experienced many situations where to others, I was just another weird guy … someone perhaps to be treated courteously, but to be pawned off as soon as possible. I've also been in many situations … as it happens, a lot in travel … where "epic fail" of accessibility features and accommodative services were the norm, rather than the exception, and where I was clearly just another annoying object to be moved and tidied away.

It makes me wonder whether anyone has done a sociological / psychological study of how well-off white people, in particular, react and adapt to the change in social status that happens when they (or their children!) confront a new disability. How much of what we call "Ableism" or "disability discrimination" us really us experiencing a loss of relative privilege?

Relax, Embrace The Internet

picture of wheelchair user with laptop
I used to worry that the Internet would become a disability ghetto. I'm not worried about that so much anymore.

Although I get the impression that I'm not as obsessed with social media as some, I both use and enjoy Twitter, blogging, and to a somewhat lesser extent Facebook. I also get most of my general news and commentary on websites. I listen to podcasts. I'm not a gamer, and for some reason I never took to texting, but I have a laptop, smartphone, tablet, and AppleTV. In other words, I'm quite comfortable with living, working, and playing on the Internet. I'm no Luddite.

Yet, I've always been wary of claims that the Internet offers some very special, amplified benefit specifically to people with disabilities. My main reservation has been similar to what a lot of technology-skeptics fear for everyone … that the "virtual" interaction will replace "real" interactions. There's a higher risk of something like that for people with disabilities, especially when technology and social media are held out as solutions to the problems of accessibility and prejudice, when perhaps they are less solutions than avoidance mechanisms.

The answer to neighborhoods that aren't wheelchair accessible is more accessibility, not shopping, socializing, and working on the Internet, stuck in your bedroom. The answer to worrying about how people will react to your disabilities isn't to restrict your interactions to a virtual world where people don't have to know that you look weird or talk funny. Most of all, I'd hate to see the availability of the Internet used as an excuse to stop worrying about accessibility, isolation, and discrimination.

That's the way I thought for a long time, but now my thinking has changed a bit.

At this point, I think that the "online world" has to some extent grown past those concerns. First of all, everyone lives at least a portion of their lives online, whether they have a disability or not. If anything, there's a risk of people with disabilities falling behind in access to the Internet; I'm a lot less worried that the Internet will become an isolating trap for people with disabilities. I can still happen, but so far, the Internet is more of a liberation. Second, since I started this blog and website project, I've been blown away at how many people with disabilities use the Internet to reveal themselves, not hide … both their thoughts and their appearance.

So, articles like this one about disabled teens using online services to socialize and "flirt" don't make me as concerned as they once would have done. Anyway, people with disabilities should, if anything, be open more open whatever tools are at hand to live the kind of lives we want.

Maggie Freleng, Women's - June 11, 2013

Thursday, June 13, 2013

Grammar Girl Gets It Right

Grammar Girl podcast logo
Every week I enjoy listening to several of the Quick and Dirty Tips Podcasts … 5 to 10 minute audio programs that each cover one short aspect of topics like grammar, personal finances, parenting, etiquette, public speaking. I did a quick search of the website and found that several of the Quick and Dirty podcasts have done episodes on disability issues.

The first one I listened to is Episode 155 of the "Grammar Girl" podcast: "What to Call People With Disabilities"

"Grammar Girl" Mignon Fogarty discusses the proper words and phrases to use when writing about people with disabilities. Her advice is very correct and up to date, and I don't disagree with any of her choices. She advocates "people first" phrasing, confirms that variations on "handicapped" are no longer preferred, (except for a few phrases like "Handicapped Parking"), and even goes out of her way to explain that made-up words like "handi-capable" and "differently abled" are well-meaning but condescending and should be avoided. My only quibble is that the Grammar Girl usually explains why language rules and customs are as the way they are, but in this podcast she basically says it's because people with disabilities prefer it. I think she could have said more about the fact that people first construction and more neutral terms are also more linguistically accurate.

Overall, though, this is a very good guide to disability language that many professional journalists could learn from.

Wednesday, June 12, 2013

Smart Ass Cripple Is Beautiful, Part A Million

I love when a story leads you somewhere unexpected.

What he's talking about has never happened to me. Maybe it's because I don't use a wheelchair. Or, maybe because I live in a fairly small town, where if people don't know me, they probably know my face and form. That kind of charity only really happens with strangers, I think. People can imagine the perfect recipient, but those illusions crumble as soon as they get to know the person a bit, and find out how complicated they really are.

Workshop or Sweatshop?

School for Disabled Accused of Running Sweatshop
ABC News / Associated Press - June 12, 2013

Whatever else it's doing for good or for ill, once again it is good to see the Justice Department aggressively pursuing meaningful disability cases.

So, what's the difference between a disgusting "sweat shop" and one of those charitable "sheltered workshops" people in your neighborhood raise money for? Lets just say it's an awfully a slippery slope ... between non-profit and for-profit, between a work training program and just plain work, between a safe environment with lots of extra help and supervision, and a closed-off, segregated place for people with disabilities to be hidden away while their every moment and movement is regulated and micromanaged.

Lots of people have jobs that suck. Sheltered workshops suck in a unique and particular way, whether or not their indignities rise to the level of criminality.

Monday, June 10, 2013

Now THAT'S Inspirational

My first post from cool Tumblr to stodgy old Blogger blog … Is this thing on?

I hope so, because this is awesome sauce.

Guy in a wheelchair subdues convenience store robber.

Tywin Lannister: Father Of The Year

Last night's season finale of "Game Of Thrones" included a scene between Tyrion Lannister and his father, Tywin, that I suspect affected people with disabilities differently than most viewers. Tyrion (a.k.a., "The Imp", "The Half-man") challenged Tywin to name one time he truly put the family's needs before his own. Tywin answered by saying that when Tyrion was born, he wanted to drown him at sea because of his deformity, but didn't, and instead raised him as his son, because he is a Lannister … in other words, for the good of his family.

Now there is a few lines of dialog packed with multiple, and multiply-layered meanings for people with disabilities. What first came to my mind is how parents get praised for raising children with disabilities, justifiably, but with the implication behind the praise that the selfish alternative … the thing they'd have preferred … would be to reject the offspring, or endure the more short-term grief of them dying on their own.

Tywin is more literal and unapologetic about it than most real-world parents. Yet, the thought was there for me ponder as soon as I saw the scene.

Sunday, June 9, 2013

Disability In The News

After several months of scanning the news articles that come up daily on Google News using "disability" and "disabled" as topic filters, the overall impression I get is that at the moment, disability news coverage is about three things:
  • Government-funded disability programs either going broke soon or grinding to a halt.
  • People pretending to be disabled or otherwise stealing disability benefits or privileges.
  • Inspiring local stories about individual people with disabilities overcoming adversity.
It's not about accessibility, employment opportunities, or ongoing, persistent institutionalization ... except for occasional coverage of the absolute worst examples of institutional abuse.

Saturday, June 8, 2013

Probability For Dummies

Just a reminder in light of news about the latest random mass shooting

IF the majority of random mass shooters have mental health impairments, it doesn't at all mean that the majority of people with mental health impairments are potential random mass shooters.

I don't know whether most or even many mass shooters are mentally ill anyway, though that's the impression left by news coverage. It seems like something that can be measured and known for sure, but I'm not sure where to find that information. But if it IS true, it says very little of any use about people with mental illness in general. It might, however, suggest that better understanding mental illness might help us understand random mass shooters, which might help prevent these terrible incidents.

Friday, June 7, 2013

Disney Gets Tough

I'm glad to see that the worst problem in the world regarding people with disabilities is finally being dealt with:

Associated Press / Orange County Register - June 7, 2013

Look, I posted about this before, and I agree that its unethical for people with disabilities to use their disability status to usher other, non-disabled people to the front of lines. It's also unethical for tour guide companies that hire people with disabilities specifically because they can do this, and it's unethical an extra layer of disgusting for the families that pay big bucks for this "service". I just don't think it's the biggest scandal in the disability world, by a longshot.

Also, do people with disabilities really value going to the head of all the lines the lines due to their disability? It sounds like one of those "privileges" that non-disabled people like to hand out, while they skimp and fudge their way around true accessibility and equal opportunity. You need too much care so you have to live in a nursing home, but if you are fortunate enough to have a car, why you can park in handicapped spots!

On the other hand, I haven't been to Disney World in decades, and I understand those lines can be incredibly long, so maybe its a perk worth preserving.

"Push Girls" and "My Gimpy Life"

I've been watching two "TV" shows about wheelchair users that have a lot in common: "Push Girls" and "My Gimpy Life". Both take a little effort to find, Both are worth the effort.

"Push Girls" and "My Gimpy Life" are about young women who are wheelchair users, who became disabled at some point due to accident or illness. The women in both are quite beautiful in the conventional sense. They all live and in various ways struggle to work in Hollywood ... the city and the industry. In both shows the women handle their disabilities with grace, humor, and assertiveness, while acknowledging how physical barriers and prejudices crop up every day. "My Gimpy Life" is fictional, while "Push Girls" is a reality show. Yet, they both feel realistic, and both attempt to portray the realities of living in a wheelchair honestly.

One major difference between these shows is how they are made.

"Push Girls" is a reality series on the Sundance Channel. "My Gimpy Life" is a web series posted to YouTube. Although it is on a cable channel with relatively low viewership, "Push Girls" is a fully professional television show. "My Gimpy Life" is more like semi-pro. The actors and crew are all professionals, and the quality is quite high, but like many web series, it is self-produced without a studio or company behind it, financed by donations fans and through project funding sites like Kickstarter. By necessity, "My Gimpy Life" is also shorter. Episodes last around 8 minutes, while episodes of "Push Girls" are a full half hour in conventional TV format.

By the way, "My Gimpy Life" contains un-bleeped profanity. "Push Girls" is relatively free of it, not surprising for a mainstream, general-audience show. However, the swearing on "My Gimpy Life" adds authenticity, and its nothing like, say, "The Sopranos" or "Deadwood." Both shows talk fairly frankly but appropriately about sex.

The biggest difference between these shows is that "Push Girls" is a more or less "serious" show, which shows all facets of these women's lives, the good, bad, and ordinary, where "My Gimpy Life" is reality-based, but firmly a comedy. If that makes "Push Girls" sound more profound, I don't mean it to. Both shows are profound in their own ways.

I haven't drawn any other big conclusions about these shows, except that I want more of both.

"Push Girls" on the Sundance Channel

"Push Girls" on Netflix

"My Gimpy Life" on YouTube

Thursday, June 6, 2013

High Maintenance

There's no justification for ableism, just as there's no justification for any kind of prejudice. In my experience, though, when it comes to ableism, there are explanations. For example, thing … we are pretty "high maintenance".

"High maintenance" is an insult usually applied to individuals perceived by someone else as being picky, demanding, never satisfied with the standard, but always asking for a customized version of whatever is on offer. It's the person who always wants their salad dressing on the side, milk instead of cream in their tea, their bacon extra crispy in a restaurant. It's the person who always insists on taking extra time to get ready, is easily offended, or who must hear from you by phone or text at precise intervals. "High maintenance" tends to be applied disproportionately to women, (that's called "sexism"), even though the world is full of controlling guys who could just as easily be called "high maintenance" if we didn't already call them "abusive".

"High maintenance" begins with someone's collection of very specific, very uncommon needs, but it's really about how other people perceive the needs and react to them. Behind the phrase, I think, lies two assumptions: one, that there's something phony and attention-seeking about these needs, and two, that since the standards always seem to be shifting, we can never really satisfy the "high maintenance" person and might be better off steering clear of them entirely.

Well, people with disabilities have all kinds of "special needs" and requirements that other people very quickly find can be a pain to meet. We need buildings to be accessible, and since many still are not, that takes work and expense. Almost accessible isn't good enough, either; one step is as much of a barrier as a while staircase. Some of us need to use different modes of communication than most people, such as Sign Language, large print, or braille. Many of us need more time to complete assignments or tests in school, have lists as long as your arm of foods we can't eat, and may not even be able to sit in an ordinary chair when we visit your house or go with you to the movies. We have to plan ahead twice as much as others, and we have fewer alternatives to choose from when things dn't go right.

No matter how well prepared and independent we are, our needs are not just our own, they belong to everyone we come in contact with. From a purely technical standpoint, we are just more "high maintenance" than most non-disabled people.

Here's where there are two crucial differences though:

First, our "special needs" are real, iron-clad, entirely practical, and inescapable. We can't decide to not need them. We can't shrug them off just to make things easier on others. Often, the only way to do that is to stay home where presumably we've adapted our environment as fully as it can be. But if we want to live a life, we have to impose a bit on others, which means making a daily decision that it's okay to be a bit "high maintenance". So, if it sometimes seems like we don't care how much of a bother we are being, understand that it may be the only way we can deal with our situation without retreating into a cocoon.

Second, it may seem like nothing's ever right for us, but it just seems that way because the needs are unfamiliar to you and require more effort than you may be used to giving. The majority of us who are not truly "high maintenance" in the worst sense, (don't get me wrong, some of us are, we're human), will do our part to make our needs understood and as easily met as possible. Here's where the unique beauty of accessibility modifications comes in; the more accessible the world becomes, the less "high maintenance" we will be.

Finally, if our needs sometimes seem endless, ill-timed, and annoying to you, imagine how they feel for us. Though it's not a nice thing to do, you do have the option of walking away. We can't. So, sometimes, some days, we feel the need to shed the humble self-deprication, and embrace our inner divas ... to be "high maintenance", confidently and without apology.

Wednesday, June 5, 2013

Cast A Cripple Whydontcha?

Hollywood's Disabled Actors Protest NBC's 'Ironside' Casting - When Is It Their Turn?
Greg Gilman, The Wrap - May 20, 2013

Good question … why didn't NBC cast the new "Ironside" with an actor who actually uses a wheelchair?

The most likely answer is a combination of two factors: 1) Blair Underwood was already under contract to star in a series to be specified, and 2) NBC feels they need a recognizable "star" to promote the re-imagining of a famous, but maybe only second-tier famous, series of the past. These are good reasons.

On the other hand, my sense is that new TV series with big name stars don't necessarily do better than series anchored by relatively unknown actors. In fact, it seems more like a sign of lack of confidence in the series itself … as if it can't stand on its own quality and needs a star to make it viable. And the fact remains that there are good actors out there who have disabilities, who could bring an extra dose of authenticity to a role like Chief Ironside, in which the main feature that distinguishes him from your run-of-the-mill police procedural sleuth is the disability. I like that that the new Ironside will be African-American, but it might have been even more interesting to cast a woman with a disability in the role, (a la Starbuck in the new "Battlestar Galactica", as long as they are focusing on the actor over the script.

Tuesday, June 4, 2013

Disability News

picture of newspaper
NJ Bus Company Settles Disability Notice Requirement
CBS 3, Philadelphia - May 29, 2013

The Justice Department it catching a lot of flack these days; maybe they deserve it, maybe they don't. But, it does seem to me like they are pursuing more ADA cases than they used to, and if so, that's a good thing. When it comes to the Americans with Disabilities Act, private lawsuits are fairly weak; the biggest hammer belongs to the U.S. Department of Justice. This New Jersey bus line case sounds like a simple example of straight-up discrimination ... imposing an inconvenience exclusively on people with disabilities that isn't imposed on other customers. So it's not complicated, but because of that even more important to highlight by getting the Justice Department treatment.

Ben Yakas, Gothamist - May 29, 2013

This article does a remarkably poor job of explaining exactly what the different sides and constituencies want and don't want here. However, if I'm reading it right, and I'm not being misled, it sounds like the opponents of more elevators are using a cost argument, plus a very familiar and very flimsy fairness argument, to try to stem the tide of bulky, space-consuming, annoying wheelchairs in their nice new station. They aren't quite explicit about their real worry, but they're pretty close.

Tami Luhby, CNNMoney - May 30, 2013

Donna Freedman, MSN Money - June 3, 2013

dollar sign
A few additional thoughts on the impending end of the world as we know it, when Social Security Disability "runs out of money":

Similar to how the Social Security Retirement system is supposed to work, Disability payments are drawn from a Trust Fund, which is constantly maintained by the Social Security Taxes paid in by workers. The problem is that for awhile, outgoing payments have amounted to more than the Trust Fund collects from wages. 2016 is the latest estimate of when the Trust Fund will essentially run dry.

One advantage of using a Trust Fund is that it takes politics out of the system, for the most part, in most years. Congress doesn't have to decide each and every year how much money to appropriate for Disability Benefits, because it's got it's own funding system. Maybe the really frightening result of the Trust Fund running dry is that Congress will have to make real decisions that people with disabilities will know about, that affect their lived directly, and that mean far more than blandly kindhearted platitudes about people with disabilities that are so easy to speak.

Snark aside, it's a legitimate question. How much of our federal budget should go to help support people with disabilities who can't find, can't get, or can't keep jobs? Assuming that this is a reasonably compassionate country, and that we agree there's some advantage in people with disabilities not starving or living in the streets en masse, how much of our total economy … our Gross National Product … is a reasonable amount to spend?

"Running out of money" doesn't have to mean what it sounds like it means. It just means that due to several factors … the downturn of the economy, a population that's getting proportionally older, maybe more applicant's not taking one "no" for an answer … the old formula may not be the right one anymore. 

It sucks having to ask for money ... to have to argue why we deserve to live decent lives. It's much more empowering to fight for equal access, dignity, on-time paratransit, etc. Galling as it is, we may soon have to make our case that more … a little more perhaps … is worth allocating on basic, bare-bones support, like Disability. As I said yesterday, if we need to make that case, we'd better start doing it now.

Monday, June 3, 2013

News, Just A Teaser

I am delaying my usual Monday summary of disability-related news stories until tomorrow (Tuesday). However, I do want to share two news stories about the same topic … a new projection that Social Security's Disability Trust Fund will run out in 2016. I'll have more to say about this, and you can also read some past blog posts that touch on the subject here, here, and here.

My short take is that the problem is somewhat different than how it is portrayed, and that we need to start now to make our case that helping people with disabilities by giving them money is good for us, and for the country. It might even be worth a slightly higher portion of our GDP than we spend now.

Tami Luhby, CNNMoney - May 30, 2013

Donna Freedman, MSN Money - June 3, 2013