Question

Is it a species of inspiration porn or objectification that I'm smiling, feeling kinship, and having, "You go girl!" thoughts about the 9 year old girl with a right hand amputation who is visiting this Starbucks with her parents, dancing around as she walks up to the counter, seemingly having a great, happy summer day?

Brothers And Sisters

Siblings Impacted By Disabilities Too, Study Finds

Michelle Diament, Disability Scoop - July 30, 2013

This is an innocuous article, with an unsurprising conclusion, but for some reason it bugs me. My first reaction is to say "Boo hoo! Growing up with a brother or sister who has a disability must be awful!" The next thing I think is that having a sibling with a disability is just one of many factors that can contribute to stress, unhappiness, and mental troubles for children and youth. Finally, I realize that what's upsetting me is that the article threatens to open a can of worms that I've never really dug into. I don't think there's anything as disgusting as worms in there, but I'm sure I'd find some surprises.

Why Have I Never Seen This Before?

The "Capitol Crawl" demonstration, pushing for a vote on the Americans with Disabilities Act, in 1990.

Those were the days.

Not that they're gone, or that protests like this aren't relevant anymore. It's just that there was a simplicity to the ADA that you just can't find in today's really big disability issues. So, you can do a big, dramatic action like this, but a large percentage of those who see it will genuinely wonder what the hell it's all about, and suspect you're being over-dramatic or cynically manipulative. Besides, part of the awesomeness is that in 1989, it really, really surprised people. I just don't think a disability rights action along these lines can be surprising anymore, especially in jaded Washington DC.

What will the next truly astonishing disability rights protest look like?

P.S.: Obviously, watching this for the first time yesterday, the same day I posted about another, less uplifting "crawl", was a nice coincidence.

A Worthwhile Compromise?

Subminimum Wage Plan Divides Disability Advocates

Michelle Diament, Disability Scoop - July 30, 2013

The legislation described seems right to me. It's a compromise, and I'd prefer to see Minimum Wage for everyone, but this I think addresses most of the philosophical and practical problems involved. I would like to see the bill go a bit further in defining sheltered workshop work as job training rather than employment. To me that's as important as Minimum Wage. However, it looks like the bill would make that more of a reality, if not in name then at least in practice.

So, why not just ban all subminimum wage? My wild guess is that there are too many families of people with significant cognitive impairments who think that would result in their loved one flat-out losing their "job". That may not be true, and it may not be true that too many families would think that, but it's the kind of argument that's kept subminimum wage and sheltered workshops going all this time in the face their increasingly embarrassing contradictions. It's also the same argument always used to argue against Minimum Wage increases. The compromise will help reinforce the idea that sheltered workshops and subminimum wage work are short-term pathways to full employment, not permanent, dead end jobs for supposedly substandard workers. This is an improvement.

Because the bill wouldn't do away with sub-minimum wage work altogether, I'm surprised that the National Council on Independent Living is in favor of it, but in a way that encourages me a bit to support the compromise.

More about sheltered workshops and sub-minimum wage work here, here, here, and here.

Crawling

Disabled Man Claims Delta Forced Him to Crawl On and Off Plane

Alexis Shaw, ABC News - July 29, 2013

Some random thoughts on this story, which has been bouncing around the various national news outlets for the last several days:

I waited until now to post a link to this story, because previous articles about it were from Fox, the New York Post, The Daily News, and other outlets I prefer not to use as sources. I don't know if their political leanings make much difference for stories like this, but I guess it's similar to my somewhat rational aversion to shopping at Walmart.

I wonder if other kinds of prejudice contributed to the situation? The man seems to be a native Hawiian, and he's kind of a tough-looking dude, to a mild degree … kind of like someone with a take-no-shit attitude, who probably doesn't naturally elicit compassion.

It seems like he did everything the way you're supposed to do it, complete with followup calls to the airline before and after each stage of his trip.

There are probably three layers to Delta's "epic fail". First, they were probably incorrect when they told Kanaan they could accommodate him at Nantucket. If nothing else, the small size of the airport there, and maybe of the plane that serves the island, should have tipped off the helpline to make doubly sure the equipment would be there. Second, there's the logistical failure itself. There's no reason why even a small airport at this point should lack an aisle chair and a lift. If they do, I think there's a fairly sizable airport not far away that could have loaned them the equipment for the day. What's it called? Oh, yeah, Boston! Third, faced with the logistical failure, did the Delta staff on the scene make the best of a bad situation? How did they try? Did they offer to carry Kanaan off the plane and to his wheelchair? Many wheelchair users rightly deem carrying to be undignified and unacceptable, not to mention unsafe, but since lifts can't be conjured out of thin air, he might have preferred it to crawling. I guess I'd like to know how Kanaan would rate the human interactions he had with flight attendants, separate from the outrage of the airline's equipment fail.

I wonder how many random strangers and fellow passengers witnessed the whole spectacle. I hope for Kanaan's sake nobody, but then again, it might be valuable for more people to see first-hand the gritty, human consequences of corporate ineptitude and insensitivity.

Hopefully, these finer points will be fleshed out by the lawsuit. It's one reason why holding lawsuits and lawyers in blanket contempt is so short-sighted. Lawsuits can really help guide future behavior in useful ways. Of course, it might also end with an out of court settlement designed in part to shield Delta from further bad publicity. I hope that doesn't happen.

Oddballs

Hey Kid: Thoughts For The Young Oddballs We Need So Badly

Linda Holmes, NPR's Monkey See Blog - July 19, 2013

This is off-topic in terms of disability, but it's just so encouraging and specific that I have to share it. Besides, as people with disabilities of whatever kind, we're nothing if not oddballs ... even those of us who wouldn't be oddballs at all if we didn't have a disability.

Linda Holmes is talking about creative people who struggle to produce art of various kinds. For some of us, that's exactly what we want to do, too. But even if you're not into writing, painting, music, acting, or whatever, if you're disabled, I think you are a performer, like it or not. In that case, you might as well make it good, and while you're at it, settle some of your own demons.

That's my roundabout logic for linking to this really lovely article.

Gym Class

Quinn signs law expanding gym class exemption for disabled students

Staff Report, Chicago Tribute - July 28, 2013

This change in Illinois law sounds bigger than it appears to be. The exemption is only for students with disabilities who already participate in sports, specifically adapted sports like wheelchair basketball or track. It doesn't exempt disabled students from physical education generally. I'm not even sure whether a general exemption would be a good idea or bad.

It got me thinking about my own history with "gym class".

In grade school, I went to gym with the rest of my class, and participated with them where I could. When I couldn't, I did a number of exercises and physical therapies with a one-on-one aide.

The same happened in high school, and I earned my P.E. credits more or less like everyone else, stepping back from any activities that I clearly wasn't able to do.  The only other notable difference was that for some reason, I was exempted from having to shower, though I did have to change into gym clothes. I can't remember how that decision was arrived at, whose idea it was, or why. I suspect that it was due to a vague concern about teasing from other students, embarrassment on my part, or both. Looking back, I don't think showering would have been a problem at all; for a variety of reasons, I didn't get teased much at all in high school, and I don't think my classmates would have been any more taken aback by my naked body in a shower than they did with me clothed.

In college, my P.E. requirement was completely waived, no questions asked … including one of Dartmouth's signature graduation requirements, the swimming test. I was very glad of this at the time, but now that I think about it more, I see how curious it was. Dartmouth is a very athletic institution, not so much in team sports, but in outdoor pursuits. They probably could have offered a far wider variety of ways for me to fulfill a P.E. requirement feasibly. I think the decision to waive it was part of Dartmouth's overall approach to disability at the time … which was fairly weak on systemic accessibility, but very accommodating to individual students with disabilities.

I wonder what would have happened if I had asked for adapted P.E. instead of happily taking the waiver.

And The Other Show To Watch This Fall ...

"The Michael J. Fox Show" at the TCAs:

"As much as he has to manage the physical aspects of his neurological disorder, it also takes energy to manage other people’s perceptions of his condition."

That's one of the most perceptive things about disability I've ever read from a reporter not specializing in disability issues.

Ironside

Tweets from an "Ironside" panel at the Television Critics Association convention:

Next up at #TCAs13: NBC's "Ironside" remake w/Blair Underwood and Pablo Schreiber, who's not rocking his Orange is the New Black pornstache.
— Alan Sepinwall (@sepinwall) July 27, 2013

This Blair Underwood IRONSIDE remake just feels inches away from an SNL procedural spoof skit to me.
— Alison Willmore (@alisonwillmore) July 27, 2013

I like Blair Underwood, but IRONSIDE actually has his cop boss say, "There are procedures, dammit, and they need to be followed!" #tcas13
— Linda Holmes (@nprmonkeysee) July 27, 2013

Standard "best actor for the role" answer to why #Ironside didn't cast actor w/ disabilities, but a decent technical reason, too+ #tcas13
— Alyssa Rosenberg (@AlyssaRosenberg) July 27, 2013

+ About 15 percent of the #Ironside role involves flashbacks, so they say they needed an actor who wasn't a wheelchair user. #tcas13
— Alyssa Rosenberg (@AlyssaRosenberg) July 27, 2013

I forgot about the sex scene Underwood does in IRONSIDE, which I was really glad they included. #tcas13
— Linda Holmes (@nprmonkeysee) July 27, 2013

Blair Underwood is being smart and very specific about spinal cord injuries and disabled sexuality, and warming my heart. #TCAs13 #Ironside
— Alyssa Rosenberg (@AlyssaRosenberg) July 27, 2013

Blair Underwood cites MURDERBALL in talking about his IRONSIDE character's sexual activity. #tcas13
— Alison Willmore (@alisonwillmore) July 27, 2013

... Do people with disabilities under 30 even know what Ironside is?

Summer Afternoon Music

It's a musical interlude sort of day ...

July 26, 1990

I've got some thoughts on the Americans with Disabilities Act. I was less than a year into the disability rights / independent living field when the ADA passed, and I was a participant in the first round of advocate training on the ADA, which took place over a week in Washington DC. The training was presented, if I remember correctly, by the Disability Rights Education and Defense Fund ... which, among other things, has one of the coolest names in disability rights.

So, I feel like I get to enjoy a bit of old guy status as someone who was there from the beginning.

First, the half empty part of the glass …

Ironically, all of the assurances we advocates used to give to businesses that the ADA wouldn't result in a rash of lawsuits … that sweet old grandma and grandpa's general store wouldn't be forced to close because of an inaccessible restroom … turned out to be all too true. The ADA really has turned out to be mostly toothless, particularly in regard to small downtown stores, restaurants, and professional offices where people with disabilities hoped to see much more accessibility. In retrospect, despite their dire predictions of legalistic doom, the business community had nothing to worry about.

The ADA did not bring people with disabilities into the job market in droves. This may partly be another aspect of the ADA's weakness, but I think it's mainly because there are so many reasons for low employment of people with disabilities other than outright discrimination. In fact, it turns out to be amazingly hard to distinguish between illegal discrimination on the basis of disability, and simple selectivity by employers. Disability discrimination is still there, but its roots turn out to be more complex and harder to pull out cleanly than I think any of us thought. It hasn't helped that the 23 years since the ADA passed have also seen the erosion of employment security for everyone.

The ADA has not lived up to the rhetoric we used to promote it. The law hasn't really revolutionized the lives of Americans with disabilities. Millions of us still live cruelly and unnecessarily restricted lives, and many of us still experience discrimination … often well-meaning and unintentional, but at times as mean and vicious as the worst imaginable gradeschool playground. Obviously, we knew the ADA wouldn't change human nature overnight, but I think most of us had higher hopes.

Still, the glass really is half full ...

The ADA changed how we define and think about disability. Before the ADA, most people thought of "the disabled" as people in wheelchairs, plus maybe blind and deaf people. That tendency persists, but I've noticed that the post-ADA generation are much more comfortable thinking of disability inclusively, as a large group of people with a wide variety of impairments, including cognitive impairments, mental illness, learning disabilities, and chronic pain. The names of specific diseases and conditions still have their place, but they aren't the dividing lines they used to be. Disability is far more commonly measured now in practical terms, rather than by diagnosis.

While the ADA has been fairly weak as a law, it has instead functioned more usefully like a blueprint, or maybe a "Disability Rights For Dummies". If you want to treat people with disabilities fairly and create better physical accessibility, but don't know how, follow the ADA and you can be pretty sure you're doing right. It also set baseline minimum standards and expectations that have gone a long way towards taking the mystery and anxiety out of relations between people with disabilities and non-disabled people. People with disabilities generally know they can't expect perfect accommodation in all cases, and non-disabled people have a clearer idea of what their responsibilities are, and aren't. At the same time, people with disabilities now widely view access and accommodation as a right, not a kindness.

The basic tenants of disability rights have mostly been absorbed by most Americans, even if they aren't always put into practice. To cite just one very minor example, I heard two podcasters giving a recap and commentary on "Downton Abbey" say that the character Mr. Bates … a manor house valet with a significant limp from a war injury … was an example of the importance today of the Americans with Disabilities Act, because his job was explicitly threatened by people who felt that he might not be able to do the job, and in any case would bring shame on the house simply because he was disabled. That the ADA was correctly invoked by people with no personal or professional expertise on disability, in a discussion of a TV show, suggests an impressive degree of penetration into popular culture.

Although we rightly complain about it every day, transportation is vastly more accessible and available to people with disabilities than it was 23 years ago. It is astounding to me that every one of the public transit buses operated by my rural county is wheelchair accessible, and have been for at lest 15 years. It's still a patchwork system with some fatal flaws … but it is a system that people with disabilities use every day, with demand outstripping capacity. That, in itself is good news, an indicator that people with disabilities have higher expectations of mobility. When the ADA first passed and my county planners first put together their Paratransit system, they were genuinely worried that there wouldn't be enough qualified passengers to make the system work.

The ADA quite unexpectedly started a revolution in long term care, by making unwilling placement in nursing homes and other institutions a matter of civil rights, not medical necessity. If you need personal care every day and you want it in your own home, not a nursing home, the ADA is on your side. More significantly, pretty much every professional in the long term care field is at least aware of the idea that leaving people no choice but institutionalization is no longer accessible. I don't think they all believe it yet, but few of them are completely ignorant of the concept. Most of the legal and policy frameworks are now in place to make ADAPT's goal to "Free Our People" a reality. All that's missing now is the political will, and creative problem-solving skills.

My prediction for the ADA's future?

I think that the ADA could become a valuable safeguard for people with disabilities as the Affordable Care Act changes health care … in both intentional and unintentional ways. There may come a day when the ADA's mandate for equality and reasonable accommodation will protect us from necessary but risky efforts to lower the cost of health care.

Other than that, I don't see much sign that the ADA will suddenly bring tougher enforcement of accessibility standards, or do much to improve employment rates. That's okay though, because even though it hasn't worked the way we thought it would in 1990, it has worked.

"Disabled" Is Fine With Me

Lydia Callis, ASL interpreter, assumes too much and throws people under the bus.

Three Continents Watson - July 23, 2013

This blogger rightly calls out NYC Mayor Michael Bloomberg's Sign Language Interpreter, Lydia Callis for saying something stupid about disability … specifically, that Deaf people aren't "disabled". However, I think the blogger writing about it misses the bigger problem with Callis' comment.

Yes, the comment implies that being Deaf is somehow better than having other kinds of disabilities. Yes, Deaf people are welcomed to call themselves "disabled", or not if they choose. In fact, lots of Deaf people choose not to be labeled "disabled", which I think is the phenomenon Callis is referring to.

The problem is that in a narrow, purely practical sense, Deaf people do have a "disability" … they can't hear, or have significantly impaired hearing. That's what a disability is. It is exactly analogous to not being able to walk (or having difficulty walking), not being able to see (or not being able to see well), or having any other kind of significant, permanent impairment. "Disability" does have social dimensions, and these are pliable. But "disability" is also literal and specific … and not something you can change just by using a different word.

And that's not a prison or anything. Disability isn't "bad" … or "good". It just is. I imagine the reason Deaf people might not want to associate with the word "disability" is that they think it means "less than" or "incapable". Well, it does mean "less than" ordinary hearing ability, and "incapable" of hearing like most people. But it doesn't mean less valuable, or less capable as a person.

That's the beauty of the term … why I actually embrace it. "Disability" is a thing I have, nothing more, nothing less. To me, that's liberating because it acknowledges and describes reality, but doesn't over-state it.

If anyone from the Deaf Community wants to dispute any of this, I'd welcome the discussion. It's fully possible that I'm completely wrong about this.

Take 'Em To Court

Feds Charge Florida Over Mishandling of Disabled Children

Sidney Lupkin, ABC World News with Diane Sawyer - July 24, 2013

It's good to see the Justice Department getting serious about enforcing the Olmstead decision and the Americans with Disabilities Act. I have three points to add to what's in this pretty good article:

1. Although the Florida cases seem to involve actual insensitive treatment and cruelty, the issue is really about a state denying choice. Even if the nursing homes were the most pleasant ones possible for the children and youth involved, the point is they shouldn't even be there; they should be getting their daily support and assistance they need at home. It's not about cruelty, it's about choice. 

2. It's not about money, either … except that Florida could probably be saving money overall by providing more services in homes and less in expensive nursing homes. Most likely, there are two separate care budgets, and bureaucratic barriers that prevent taking money already being paid to care for a kid in a nursing home and repurposing that money to care for them at home. 

3. Florida isn't the only state where this goes on. In fact, it happens in every state to some degree. Florida is just an especially egregious case, where the Justice Department probably feels it can make the most impact. So don't be smug, New York, California, Massachusetts, and other bluer states. When it comes to long term care policy, nobody is even close to perfect. 

4. This doesn't just happen to children and youth. It happens to adults, too, including a huge number of senior citizens. How many 85 year olds living in nursing homes do you think would choose to be there if they had sufficient services and supports available to them to live in their own homes?

Okay, 4 points. This is important dammit … in some ways far more important than restaurant accessibility, accessible parking violations, or whether people call us "disabled people" or "people with disabilities," and those are important, too. For millions of people with significant disabilities, long term care is an existential issue.