Friday, April 11, 2014

Another Analogy ...

Dave Hingsburger, Rolling Around In My Head - March 5, 2012

A comment on yesterday’s “The Airport Analogy” post included a link to another disability analogy I really like. Dave Hingsburger suggests trying to write a coherent paragraph without using the letter “e”. It is a good approximation of the mental intensity required to live with physical or mental disabilities. I particularly like this line.

"Disability isn't about not having a cut curb ... well it is but it isn't ... it's about figuring out what to do about the fact that there isn't a cut curb.”

I really think that a good analogy for disability is a precious thing. We should be collecting them.

Thursday, April 10, 2014

Best Article On "Autism Awareness"

Amy Sequenzia, Ollibean.com - April 1, 2014

I have read many great articles and blog posts explaining how Autism is misunderstood, how Autism Awareness is misconstrued, and how a prominent organization like Autism Speaks can come to be viewed as the enemy by the people it purports to serve. This article does the best job at all of it that I have ever seen. It’s not just a specific set of policy disagreements … though a few key changes would make a big difference. It is really a whole different paradigm. At a certain point, I think people are either going to “get it” or they won’t. But first they have to be introduced to the different paradigm. Amy Sequenzia’s post is a good start. Here is another one, which I recommended last month.

Photo Of The Day ... And A Thought

Young woman with blonde hair, smiling, sitting in a blue manual wheelchair, taking a "selfie"

I usually don’t like captions with disability photos, but this is a good one:

"MY WHEELCHAIR AND I ARE FEELING HELLA CUTE TODAY"

"My wheelchair and I... " This is the kind of thing that makes nonsense out of the idea that wheelchairs, canes, walkers, and the like are bad things ... that everyone who uses them are "confined", and want nothing more than to escape from them and discard them one day. It's so much more complicated, subtle, and varied a relationship than that.

The Airport Analogy

Young girl lying face-first over a rolling suitcase being pulled by her father
The best known attempt to explain disability to non-disabled people is probably The Spoon Theory which describes chronic illness … and arguably disability ... as an exercise in careful energy conservation with limited resources. In the story, a woman with chronic illness uses a bundle of spoons to illustrate the idea of stamina being in such limited supply that you constantly have to make agonizing choices about what to “spend” them on, because there is never enough energy a.k.a. “spoons” to get through a typical day. What will fall by the wayside today? If I cook a full, nutritious meal, will I be too tired to benefit from it? If I attend a family birthday, will I spend the next day in bed?

I love the “Spoon Theory”, but I would like to suggest another analogy to help non-disabled people understand what it is like to live with a physical disability or chronic illness. I call it the "Airport Analogy”. Because, when you have a physical disability or chronic illness, every day feels like a day of air travel.

Air travel is this weird combination of physical exertion, idleness, boredom, panic, and bursts of intense mental frustration. Meanwhile, everyone is judging you, and you are judging everyone else, too.

Air travel is empowering … New York to Los Angeles in less than a day! Air travel is also utterly humiliating. The people you have paid hundreds of dollars to serve you, treat you like cattle, and speak to you like you’re a five year old. At the end, you have accomplished something extraordinary, yet at the same time somehow mundane and exhausting.

Most days with a disability are like this, no matter where we are or what we are doing. When you have a disability, every day is like a day of air travel.

Both disability and air travel are physically tiring. Both are also mentally exhausting. Some days, air travel isn’t so bad, when things go right. Other times, it’s terrible … usually due to a toxic mix of organizational failures and individual stupidity and insensitivity. Life with a disability is like that, too. There are good days and bad days, and you can rarely predict them. There is the strain of trying to remain calm and civil, when you just want to scream at people. There is the feeling of being subjected to surface pleasantries that turn out to be paper thin. There is the feeling of being herded around like so much furniture for the sake of other peoples’ convenience, even though the whole purpose of their work is to serve you. And being spoken to as if you are a possibly unstable child. In disability as in air travel, the customer is often wrong, and the provider is boss.

On the other hand …

As bad as both disability and air travel can be … people go through them all the time.

Some people travel by air a lot, a few nearly every day. Think business travelers. They learn coping strategies. They pack light. They buy rolling suitcases. They know the best times to arrive and where to park. They can find the best place to get a coffee in like 20 different airports. They know which airlines have the best customer service, which ones are good in a crisis. They develop effective negotiating skills. Some of them even develop thicker skin, so they are less bothered by stuff. They actually learn to appreciate some aspects of the experience … turning negatives into positives and taking pleasures where they can find them. Some come to enjoy their travel time, even if it’s still tiring and sometimes frustrating. It becomes part of their routine, part of who they are.

It’s much the same with disability. A non-disabled person can get a sense of the difficulty of living with a disability, through analogies like the "Spoon Theory" and maybe this "Airport Analogy”. But, it is a mistake to evaluate either disability or air travel by the limited and disadvantaged perspective of the inexperienced participant. Once-a-year vacationers tend to have a much worse experience with air travel than regular business fliers. Likewise, as many have pointed out, “wheelchair for a day” events and brief blindfold experiments can make disability seem much worse than it is for most of us, because if we have been disabled for more than a couple of years, we have learned the ropes.

I really think that the “Airport Analogy” could be a useful tool for better understanding. A lot of people can relate to air travel, and like disability itself, it has both negatives and positives.

What do you think? Does the “Airport Analogy” work for you? Or, do you have another idea to make life with a disability easier for non-disabled people to comprehend?

Wednesday, April 9, 2014

Justice Department Agreement On Sheltered Workshops

News topic icon
Dan Barry, The New York Times - April 8, 2014
"The Justice Department on Tuesday announced a “landmark” agreement with the State of Rhode Island to free people with developmental disabilities from a decades-old system that kept them unjustly segregated in sheltered workshops and adult day programs, removed from the competitive workplace and the broader community."
"The settlement, which addresses the civil rights of about 3,250 Rhode Island residents, also provides a road map to compliance for the 49 other states, federal officials said. They estimated that across the country, 450,000 people with intellectual and developmental disabilities while away their days in essentially cloistered environments."
This is a great followup to the Obama Administration's about-face on the minimum wage increase. I hoped then that it would lead to a broader official assault on the whole practice of paying below minimum wage to certain disabled workers in sheltered workshops. Although the Justice Department agreement only applies to Rhode Island, it sets a strong precedent.

1. The fact that it is a Justice Department agreement in a civil rights case clearly indicates that this is a civil rights issue, not just a pragmatic policy issue. There are good policy and economic reasons to end the practice, but since change will have to be disruptive, putting it on civil rights grounds may make the process move faster.

2. The agreement applies to a whole state. That is important because states have the power to shape policies and practices for all the agencies they fund. Congress could repeal the laws that allow sheltered workshops and sub-minimum wage, and make the changes instantly for the whole country, but it's not likely to do so anytime soon. State-level change can be just as effective.

3. The agreement includes a sensible roadmap for change that spells out the viable alternatives to sub-minimum wage and sheltered, segregated employment. It starts a process. Watching the Rhode Island model play out will help other states refine the process so that the practices end with as little disruption as possible.

4. The agreement also encompasses self-contained, sheltered "Day Programs" that aren't about employment, which is really great news. This reinforces that segregation is wrong, regardless of the type or "severity" of the disability.

Traditionally, developmentally disabled people have been slotted into one of a continuum of service models, based on some assessment of how "severe" their disabilities are. Mildly disabled people might hope for mainstream jobs in mixed company, possibly with some extra support from a disability agency. Moderate to severely disabled people were presumed to be unable to function in "normal" jobs, and so were placed in sheltered workshops. People "too disabled" to do even sheltered workshop work go to "Day Programs" that traditionally were more like day care for adults.

This agreement basically breaks up these boxes, and requires states and disability agencies to make sure disabled people aren't segregated anymore from mainstream life, and that if they work, that they are paid at least minimum wage.

I was particularly struck by the situation the Justice Department found, where a high school based work preparation program “had become a feeder system” where the kids would graduate or age out, and just move over to a sheltered workshop. This is what happens when a community of teachers, counselors, and disability service providers all reinforce a deep-seated conviction that, “This is the best we can do.” Sometimes, insular systems like this reform from within, as people increasingly realize how out of date their methods are, as well as their assumptions. But, often it takes an outside force like the Justice Department to crack the egg.

Hopefully, this will crack the whole bunch of eggs, and the 49 other states will take the hint and start … or finish reforming their systems.

On a personal note …

For what it’s worth, I clearly remember going to a workshop on Supported Employment as an alternative to Sheltered Workshops back when I first started working at a CIL. That was about 20 years ago. So, these really aren’t new ideas.

Also ...

I think Dan Barry did a great job with this article. He got the language right and all the relevant questions were asked and answered.

Tuesday, April 8, 2014

Best "Smart Ass Cripple" Post

Smart Ass Cripple - April 1, 2014

Sometimes, when I read one of Smart Ass Cripple’s posts, I really can’t figure out whether the water falling out of my eyes is from laughing or crying. And when it’s crying, I can never tell if it’s because of the profound truths I’m reading, or because I’m sad that I can’t write nearly as strongly and succinctly as he does.

Best Summer Vacation Plan


This is a great idea. Four college students … at least one of whom is a wheelchair user ... driving across the United States, coast to coast, documenting accessibility in 20 cities. I can’t wait to read more about their plans. How are they going to decide what facilities to check? Are they going to use an accessibility mapping app, like AbleRoad or AXSMap? What sort of vehicle will they be driving?

Here is a brief video describing the trip, also posted on the project website.


I willl be following their progress!

Best Article On Disability In College

Eva Sweeney, Hannah Langlie, Julie McGinnity and GimpGirl Community (posted by Jennifer Cole) - March 28, 2014

This is one of the best articles advising students with disabilities in college that I have ever read. The core of the piece is the tips and stories of three women with different physical and sensory disabilities who are at various stages of higher education. I made a few notes as I read:

- I’m not sure the focus in high school transition planning for disabled students on “menial jobs” is because teachers and counselors assume students won’t go to college. College is truly not for everyone. It might be more accurate to say that schools from K-12 are still not very good at identifying disabled students who should go to college and have the ability to do so if they have the right supports. By the time students reach “transition” age … generally age 13 and older … a lot of the key decisions have already been made, and it’s very hard to turn a student around from a vocational path to a college path in four years or less.

- Some transition programs are staffed by disabled adults and include peer mentoring, but surprisingly few. Most are just as the article describes … staffed by able-bodied professionals. There is nothing wrong with being an able-bodied educational professional, but it means that certain key qualities will be missing from the program.

- Ironically, a lot of the bureaucracy and paperwork they cite in school transition programs is there to make sure schools don't ignore transition planning completely. Before rules and regulations were developed to require it, most schools didn’t bother with transition planning at all. Unfortunately it is true that teachers end up spending at least as much time making sure they document their work as they do actually doing their work with students. It is less of a problem with teachers who believe in their students’ potential, because they will generally find it easier to write meaningful plans when they actually believe in them. It’s much worse with teachers and counselors who are disillusioned or profoundly skeptical that their students can achieve higher levels of learning and functioning.

- I found it interesting that the only positive things either of the three women say about the disability services offices of their colleges was about their logistical support … like maintaining campus accessibility maps and obtaining braille and other accessible technologies. None of them mentioned counseling, tutoring, or even arranging accommodations with professors. All three women say that they arranged their own accommodations directly with professors, and in fact they underscored the importance of keeping up a constant communication with professors about their needs and procedures. Yet, most college disability offices say that it is their job to arrange accommodations and act as mediators between students and professors. It seems like there is a perception gap between what disability offices define as their mission, and what disabled students actually want.

- For me, the most meaningful and eloquent quote in the article was from Hannah, about managing personal care attendants:
“I always (jokingly but seriously) say that I did not come to college in order to have five more people try to be my mother. It’s funny, but it’s true. I have to often remind people that I am not the “child” that some people refer to me as and I am still in charge.”
- The women also each talked about strategies for putting professors and fellow students at ease, to make social life better, but also to facilitate discussion and full participation in class.

- Overall, the three women in the article took responsibility for their accommodation needs, and didn't seem to mind it. What they wanted from their disability services offices wasn't someone to fix everything, but simple cooperation and follow-through.

I don’t know much about current practices at college disability services offices. My impression from limited exposure to them is that 80-90% of their time and attention is on tutoring and academic accommodations for large numbers of students with learning disabilities, and that the logistical needs of physically disabled students tend to be afterthoughts. To the extent this is accurate, there are probably somewhat understandable reasons for this.

For one thing, there are probably a lot more learning disabled students than physically disabled students at most colleges and universities. Second, there may be a perception that physically disabled students are more self-reliant, and that once a campus is largely “accessible”, there isn’t much left to do for them. Third, my sense is that these offices draw in staff who come mostly from the education field, and are therefore most professionally interested in academics, somewhat less comfortable with advocacy and negotiation with other academics (the professors), and even less familiar with accessibility and technology which call for engineering and problem-solving skills, not teaching or advising skills.

When I was in college, my only accommodation needs were physical, and I had almost no interaction with the Academic Skills Center, which was nominally in charge of disability-related services. That was 25 years ago, and I know through a friend in my class that they were doing some really good and probably ahead-of-its-time work in identifying and accommodating learning disabilities. But, for physical accessibility, it didn't seem like there was anyone in particular to go to. Fortunately, most of the places I needed to go were accessible to me, but I didn't push the envelope, either. Looking back, there are several key college experiences I simply skipped because it seemed like too much hassle to try and rig up accommodations for them. I suspect things have changed there, but I wonder how much.

I also wonder if any colleges have separate offices and coordinators for academic accommodations and physical accessibility? Or, they could have distinct and carefully staffed divisions within disability services offices.

I would be very interested in hearing about other disabled peoples' experiences in college. What worked for you and what didn't? What would you change if you could?

Monday, April 7, 2014

Jaime Lannister’s Hand & Other Game Of Thrones Notes

James Hibberd, Entertainment Weekly - April 6, 2014

From a disability perspective, the highlight of last night’s “Game Of Thrones” premier was seeing Jaime Lannister fitted for his new prosthetic hand. I can’t figure out a way paste in a picture here legitimately, but there’s a good photo in the Entertainment Weekly article linked above. Considering what a small scene it was, the whole golden hand bit gave me a lot to think about:

- The hand is definitely an example of form over function. It looks amazing, but as Jaime himself hints, it doesn’t look very useful. For what it’s worth, real-world prosthetics today are often both functional and ornate.

- Gold doesn't seem like the right material for a prosthetic. I get that carbon fiber is out of the question, but surely if they can invent a substance like "Valyrian Steel", they could come up with a strong-yet-flexible alloy and give it a cool-sounding name.

- Showing the doctor first putting a sort of sock on Jaime’s stump before attaching the prosthetic was a nice bit of accuracy. That seems like a detail they got from some research into how real amputees attach their prosthetics.

- Jaime’s reaction to losing his hand seems just right for the kind of man he was before. Mostly he jokes about it and assures everyone that he can adapt. He’s probably not quite as confident underneath, but really, he probably should be. As he points out, at worst he now enjoys a somewhat reduced advantage over every other sword-wielding person in Westeros.

Two other disability-related thoughts:

- In my earlier listing of disabled characters, I forgot Maester Aemon of Castle Black, who is blind. He’s one of my favorite minor characters, too, so I can’t believe I forgot him. I love that he’s kind, but that you can tell he’d not hesitate to take care of business if he felt he had to.

- Seeing yet another tense scene between Tyrion and Shae was agonizing. I know it’s not in the spirit of the show, but I just want those two to run off together, the way Shae suggested back at the start of Season 3.

Sunday, April 6, 2014

Disability Song ... Followup

Cat Smith, who maintains the Disability Fashion Project and Stylishly Impaired blogs responded to my hunt for a good disability song with this Ian Dury video:


"Rock & roll has always been populated by fringe figures, cult artists who managed to develop a fanatical following because of their outsized quirks, but few cult rockers have ever been quite as weird, or beloved, as Ian Dury. As the leader of the underappreciated and ill-fated pub rockers Kilburn & the High Roads, Dury cut a striking figure -- he remained handicapped from a childhood bout with polio, yet stalked the stage with dynamic charisma, spitting out music hall numbers and rockers in his thick Cockney accent." -- AllMusic.com
I had heard of Ian Dury by name, but knew nothing about him. I certainly had no idea he was disabled in any way. He does seem to check all the boxes of what I was looking for. And the song isn't in the least bit weepy or sentimental.

I'm not sure it works for me though. For one thing, I'm not wild about the tune. For another, I think the satire might be just a bit too subtle. Apparently the song was banned by the BBC for being offensive to disabled people. Back in the day, the BBC banned songs all the time, so that doesn't mean much. However, even now I'll bet most disabled people would take offense at this song, at least initially, rather than get behind its more empowering messages. I get what Dury trying do do here, and I approve, but I don't think he entirely succeeds.

Maybe I'll warm to it over time. I should probably look up the complete lyrics, too. If nothing else, it's on the right track. Thanks Cat!

Weekly Wrap-Up

Disability Thinking Weekly Wrap-Up white bold letters against a sepia toned photo of a row of handicapped parking spaces.
Sunday, April 6, 2014
Monday, April 7, 2014
Tuesday, April 8, 2014
Wednesday, April 9, 2014
Thursday, April 10, 2014
Friday, April 11, 2014
Saturday, April 12, 2014

Saturday, April 5, 2014

Still Waiting For A Good Disability Song ...

I’m not talking about a smarmy folk song you’d sing in a church youth group. Not a cry in your beer, patriotic country music song. I’m talking about a sexy, kick-ass, defiant rock or pop song from the point of view of a person with a disability. I would even accept a dance, R & B, or Hip-Hop track, even though those are not my favorite genres. The main thing is I want it to be genuine, and genuinely good. I don’t want to “like” it because it’s about disability, even though musically it’s just mediocre. I want to like it from all angles. It should go without saying that writing a sad song about how awful it is to be disabled doesn’t count.

The only way I see this happening is if the music world produces a popular or at least niche popular band in which one of the main writers has a disability. Even then, it might not happen, given how ambivalent most disabled people are about sharing details of their experience. Plus, I have no idea at all what a truly satisfying disability song would even be about.

Disability has worked as a subject in just about every other art form. Why is it just about unheard of in music?

Passing The "Tyrion Test"

Culture topic icon
Last November, I tried to come up with a disability equivalent of the Bechdel Test, the three-point checklist used to identify “good” depictions of women in movies and TV shows. Once more, a work “passes” the Bechdel Test if it:


1) Features at least two women, who

2) Talk to each other,

3) About something other than a man.

I settled on three criteria that on review months later, I still feel comfortable with. And in honor of my all-time favorite disabled character on TV, Tyrion Lannister in Game Of Thrones, I am calling my test, The Tyrion Test. A movie or TV show “passes” the Tyrion Test if:

1) At least one character with disabilities is involved in significant plot developments not centered on their disabilities,

2) Disabilities are depicted realistically, neither less nor more severe than they would be in real life, and

3) Disabled characters are givers as well as receivers … supportive of other characters, not just supported by them.

Tyrion Lannister definitely passes, as do the other disabled characters on "Game Of Thrones". Their disabilities are important aspects of their characters, but not everything they do relates to their disabilities. Their disabilities are not overblown or played for cheap drama or humor. And none of them are passive. They all give as much as they receive, act as much as be acted upon. Even Hodor, a fairly minor, one-dimensional character, seems at times to have a inner motivation and sense of duty that goes beyond mere habit or dependence. "Game Of Thrones” several times has gone even further, occasionally highlighting situations where one impaired character helps another in ways only a fellow disabled person can.

A couple of additional notes on the Tyrion Test:

- I think it is important to stick to only 3 criteria. The simplicity of the Bechdel Test is part of what makes it so compelling. That said, a good case can be made for another rule … that disabled characters should be played by disabled actors.

- The list doesn’t focus on what NOT to do, because I think that the damage done by cliches and even offensive depictions can be mitigated by adding the above three qualities. The problem in bad depictions isn’t so much any particular thing that disabled characters do, it’s when clichés and negative portrayals is all they do.

I haven’t yet tried the Tyrion Test on a wide variety of works. That really needs to be done to get a sense of whether the system really works. Maybe the readers can help me. What are your favorite, or least favorite disability movies and TV shows? Do they pass the “Tyrion Test”? Give it a try and leave a comment below!