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!

Friday, April 4, 2014

Photos Of The Day

woman in wheelchair fashion show pose, blonde hair, striped top and ornately patterned dress, all in black and white coloring
three men and one woman in a fashion show pose, woman is in wheelchair, men standing behind her
Five men in wheelchairs in a fashion show pose, each wearing a different style of fashionable suit
From the MyVoiceMyRight Tumblr blog.

There are several more photos from this Russian Fashion Week show at the link.

A Really Big Problem

Journalists don’t handle disability-themed stories well. It isn’t just the words they use ... like "wheelchair bound” and “handicapped” ... it's that they rarely report what disabled people, themselves say. Disabled people are always in the third person. We don’t do things. We have things done to or for us.

"Acme widgets hired 10 disabled people", not, "10 disabled people got jobs at Acme widgets".

We hear how mothers and fathers, brothers and sisters, teachers and care workers feel about "their" disabled people. Reporters almost never ask disabled people how they feel about their family, friends, and service providers. Or, if they ask, we don't know about it because the disabled person's voice is usually missing or severely minimized in the story that is reputed to be about them.

"Marybeth loves going to the Murgatroy Center!” A reporter hears this from Dad, and it is relevant to report because Dad is part of the story. But does the reporter ask Marybeth how she feels about going to the Murgatroy Center? Most often non. Yet, reporters are supposed to be skeptical. They’re supposed to get direct quotes and double-check the validity of claims.

This problem is what set me off about how Alex and Frederic Bilodeau were covered … for the second time … during this year’s Winter Olympics. We heard all about Frederic from everyone imaginable, except for Frederic. It seems like an especially acute problem with stories about intellectually disabled people. Are there perceived issues of consent? Do families and agencies shield intellectually disabled people? Or, are reporters just too lazy or scared to make the slightly greater effort to do a meaningful interview with someone who talks strangely, or who may take a bit longer to assemble her thoughts?

It is a widespread, remarkably consistent failure in journalism today. I suspect it has a huge and mostly unexamined effect on how we are viewed. Maybe there ought to be some new journalistic ethics rules for disability stories.

3 Ableisms: Part 3 - Asshole Ableism

Ideas topic icon
There is a strain of conventional wisdom that disability prejudice, though annoying and sometimes limiting, is otherwise benign. I think this is because we tend to compare it with other kinds of prejudice that are more notorious. Rightly or not, when we hear “Racism”, we think about lynchings, firehoses, and police dogs attacking peaceful African-American protesters. When we hear “Homophobia”, we think about gay high school students being bullied, nasty, hostile epithets, and gays and lesbians being beaten up and subjected to a seemingly inexplicable hostility. Sexism has a wide range of manifestations, and we can easily conjure up images of the casual degradation of women in the workplace, (if you can’t picture it, just watch “Mad Men”), and sexism’s ultimate expression, rape, is clearly an act of hostility.

But nobody “hates” disabled people. Do they?

I’m not sure “hate” is the right word, but people do dehumanize us. People are often disgusted by the sight of us. Increasingly I fear, as we asset our rights more directly and personally, some people respond with contempt and resentment. And history of the not to distant past reveals a literal “freak show” of accepted practices and ideas that makes the blood run cold.

So why do I call this brand of Ableism, that is so full of malice something as trivial-sounding as “Asshole Ableism”?

It is because few people consciously espouse the worst Ableist ideas. Rather, I think they are more often convictions that people have and hold onto out of sheer bull-headedness. On some level, they know these views are “unpopular”, but almost for that reason they hold tighter to them, thinking that it’s brave and truth-telling to do so. They think that they are more insightful and honest than everyone else, because they are willing to say the hard things others aren’t. This, to me, is the epitome of an Asshole … the proud waving of the flag of ignorance … selfishness disguised as a working philosophy.

What are we talking about here? On to some examples of Asshole Ableism:

- Feeling as though having to deal with disabled people in everyday life is mainly an inconvenience designed to make your day harder. “Oh, great, this is going to take forever!”, “I wish she'd get out of my way!”, “Kids like that should be kept at home!"

- Discredited stereotypes that people still cling to, even if in secret … that intellectually disabled people are sexually depraved, mentally disabled are violent, and physically disabled are bitter.

- The suspicion that a lot of “so-called” disabled people are either faking it, are deluded, or just claim disability to get attention.

- Complaining that disabled people have too many benefits and special privileges already, or that too much money and resources are expended on supporting severely disabled people, who can never amount to anything anyway.

Picture of Nazi German propaganda poster in favor of euthanasia
- Belief that disabled people should not have children, a leftover from just a few decades ago when a little bit of new knowledge about genetics led to the mainstream respectability of eugenics, the idea of controlling the reproduction of whole populations so as to “improve” the human species. This, in turn, led to arguably the most terrifying episode of Ableism in recorded history, the Nazi Action T4 program. Even on the individual level, of course, there have always been people who assume that disabled people are, by definition, unfit parents.

- Drawing a sharp distinction between physical disabled people (basically okay, capable of independence, and not scary once you get to know them), and mentally and intellectually disabled people (who are mysterious, unknowable, and in need of constant supervision). This allows a person to claim they are open minded towards one group of disabled people, but “realistic” about another.

- Parents who objectify, shelter, and overprotect their disabled children, and continue to treat them as dependent children into adulthood. This usually starts as "Well-Meaning Ableism", but when taken too far, it curdles into a twisted mix of parental duty, guilt, and martyrdom that basically wastes the lives of the disabled people involved.

- Supporting legalization of assisted suicide, with severely disabled people in mind. This is a hot button issue with a lot of considerations that have nothing to do with disability. The fact remains that there is a fairly broad acceptance of the idea that choosing death is a reasonable response to being significantly disabled. That is chilling, and suggests that our ideas about disability are not as evolved as they sometimes seem to be.

Looking back at these examples, I think there are two requirements for Asshole Ableism. One is that they are truly damaging, not just irritating. Some of these ideas threaten our very existence. The other kind is what I laid out originally … where it’s the obnoxious attitude of the people that make the difference.

So, that’s an awful lot of Ableism. So what? The main thing I take away from this exercise in definition is that different varieties of Ableism are quite different, but that it’s hard to place specific examples in the right categories.

Systemic Ableism probably does the most real damage, even though it is almost never intentional.

Asshole Ableism is the most offensive and frightening kind of Ableism, but it is generally an outlier … something relatively few people espouse and rarely gets put into practice. At the same time, it is shocking to realize how many people are entirely unaware of it, even some people with disabilities.

Well-Meaning Ableism undergirds or cynically justifies almost all other forms of Ableism, so it may be “well-meaning”, but we can’t entirely treat it is harmless.

I am interested in other peoples’ views and definitions of Ableism. What is your experience?

Related blog posts:

Thursday, April 3, 2014

Photo Of The Day

Woman with long blonde hair, in a manual wheelchair, wearing an ornately patterned dress with purples and blues, and a blue top with a light yellow shawl

3 Ableisms: Part 2 - Systemic Ableism

Ideas topic icon
There are two sides to the “Systemic Ableism” coin. First, there are the physical barriers, policies, and practices that get in our way and exclude us from full participation and equal opportunity. Second, there is the ongoing failure of people to fix these things. Systemic Ableism is aspects of “the way things are” that passively keep us out or hold us back, not because anyone actively wants to exclude us, but because they either don’t realize we are excluded, or they don’t care about it enough to make fixing the barriers a priority.

Let’s get specific, because like all “systemic” forms of prejudice … like Systemic Racism or Systemic Sexism … Systemic Ableism is often too abstract to understand without examples:

- Buildings that are not wheelchair accessible, including steps at the entrance, narrow doorways, high counters, and inaccessible bathrooms. These barriers literally exclude people with physical disabilities.

- The persistence of segregated education of kids with disabilities throughout public and private education. This is an example of how policies and practices create Systemic Ableism. In this case it perpetuates an “unequal” education, which triggers even more barriers and problems when disabled kids become disabled adults.

- Long term care systems that make it administratively easier to find everyday care for disabled people in nursing homes and institutional settings than to assemble the services needed to live independently in the community. This is a very potent example of Systemic Ableism, in that it literally dumps people into more restricted, hemmed-in lives, not by necessity, but by habit and bureaucratic inertia.

- Benefits and support systems that create disincentives and limits on disabled people who want to move towards work and financial independence. “Work Disincentives” hold disabled people back from pursuing careers and economic independence. Disincentives are also rooted in an essentially “Well Meaning Ableist” idea … that that by definition, disabled people can’t work, and if we are working, then obviously we aren’t disabled and don’t need support anymore.

- Continuing out-of-date, discredited programs like Sheltered Workshops and nursing homes. These, too, are policies and program models rooted partly in a “Well Meaning Ableism” idea … the that disabled people are better “cared for” in group settings, constantly supervised, and removed from the jumble of everyday society.

- The combination of inaccessible pedestrian pathways throughout communities, a patchwork availability of accessible transportation, and the great expense of obtaining privately-owned accessible vehicles, that create serious barriers to mobility.

It occurs to me that another thing that all these examples have in common is that virtually nobody wants things to be quite this way. There is wide agreement even by decision makers in these systems that they aren't ideal. It’s just that they are apparently not bothered enough to change them. We essentially know how to fix all of these problems. If some of them would require a lot of work and a lot of money, that simply underscores that the issue is priority, not ability. If we really cared to make this society barrier-free, it would be done. The issue is that people do care, just not enough.

Finally, like other types of systemic prejudice, Systemic Ableism tends to be hidden in plain sight. Most people don't even notice, much less question the basic, familiar structures of everyday life. "Systemic Ableism" is probably the easiest form of ableism to change, and yet the least likely to be changed, just because the only people who tend to notice Systemic Ableism are those of us who experience it directly.

Tomorrow, we turn to the Dark Side, with a look at “Asshole Ableism."