Wednesday, July 31, 2013

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.

Tuesday, July 30, 2013

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.

Monday, July 29, 2013


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.

Sunday, July 28, 2013


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.

Saturday, July 27, 2013

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.


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

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

Summer Afternoon Music

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

Friday, July 26, 2013

July 26, 1990

ADA signing ceremony photo
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.

Thursday, July 25, 2013

"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.

iconic representation of hands doing sign language
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.

Wednesday, July 24, 2013

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.

Tuesday, July 23, 2013

The Texas Candidate, Pt. 2

Candidate Draws Support and Critics for Talk of Disability
Manny Fernandez, New York Times - July 22, 2013

I guess I'll have to double-down on my previous post on Texas gubernatorial candidate Greg Abbott; I'm intrigued by, but now thoroughly opposed to his candidacy. I wondered whether his personal experience of paraplegia would make his disability-related policy positions less staunchly conservative. Now, it appears, we know. His views on disability are as conservative and … privileged … as they can possibly be.

Abbott not only has fought to curb the Americans with Disabilities Act's power over states … that's arguably been his job as State Attorney General … he portrayed himself as an example to others with disabilities that "you don't have to hide behind some lawyer" to get by and make good. At the same time, people apparently credit Abbot with improving accessibility of businesses in Texas … but only in the sense that certain hotels and other facilities made themselves accessible to accommodate him, personally. If you'll excuse the expression, that's pretty lame.

It seems like Greg Abbott was a fairly well-to-do person before the accident that caused his spinal cord injury. The article mentions that his rehab. center installed an extra phone line so he could work while there. That says something about how hardworking he is, but it also suggests a degree of privilege … both literal and mental … he might be used to. This would help explain how he could be so dismissive of people with disabilities using legal protections to improve their lives. To him, maybe, all it takes is determination. You need an extra phone line? Just ask for it! Making a speech at a hotel, and you need a ramp to get in, they'll install one for you! Of course they will!

He surely knows about the physical pain and mental stress of a catastrophic injury, but he may not be personally familiar with the bureaucratic and financial barriers that most people with disabilities face because they aren't wealthy, don't already have high-flying careers underway, and aren't, for instance the Attorney General of their state!

Franklin D. Roosevelt was an enormously privileged man. Few people of his day were better equipped to handle paralytic polio than he was … financially, but also probably from a sense of basic entitlement that I think can be uniquely useful to people with disabilities. But as rich as he was, and as well accommodated, FDR also had the imagination to understand that most people didn't have his advantages. His policy positions were driven by his understanding of the world, not just of his own life. I give full credit to Abbott for seeming to integrate his disability into his life effectively, but it looks like he desperately needs to broaden his mind and realize that most of his fellow Texans with disabilities really do need some of the laws and support systems that he so casually despises.

Monday, July 22, 2013

Better Journalism

Virginia woman with Down syndrome seeks power to control her own life
Theresa Vargas, Washington Post - July 20, 2013

Credit where credit's due. Here is a Washington Post article that does justice to a disability rights story. I'm sure that a close reading of the article would reveal some ableism, but overall, I think it gave fair consideration to "both sides" of this guardianship case, while connecting it with broader philosophical, policy, and judicial issues.

That's my "meta-analysis" of the journalism. The story itself had me swearing under my breath. I'd have sworn out loud if I'd been at home instead of Starbucks. What shocked me most was the outrageous behavior of the judge.

This Looks Like A Job For The "Wonkblog"

Chantilly bakery gives disabled workers ingredients for success
Tara Bahrampour, Washington Post - July 21, 2013

It's hard to tell from this article whether this is a genuinely empowering, admirable venture, a disability sweatshop, or something in between … like one of the thousands of programs that mean well, but which still operate under assumptions unexamined and unrevised for years, maybe decades. What's really disappointing about this story is that the Washington Post has the resources and journalistic muscle to ask really useful questions. Yet, there are only two sentences in the whole article that indicate any awareness that there's a debate to be had about fair wages and worker rights in various hybrid workplaces / training programs for people with disabilities:
"The employees, who range in age from 21 to 58, work from 8:30 a.m. to 2 p.m., make $7.25 an hour and have sick leave, vacation days and profit-sharing. Some have worked there since the 1990s."
Well … how about some followup on that? $7.25 is Virgina's Minimum Wage. Lots of "sheltered workshops" pay less than that, so this is a good sign. But, do any of the employees with disabilities get paid more than the minimum? What about the ones who have "worked there since the 1990s?" What about health insurance? How do the wages of the bakery's disabled workers compare with the non-disabled workers … like the cashier mentioned in the article? Also, out of all the workers with disabilities in the bakery, since the '90s, have none of them turned out to be able to handle management, customer service, or cash-handling duties? Or, are they only allowed to work in the kitchen? I don't know, because either the reporter didn't think to ask such questions, or she did, but an Editor didn't think the answers were interesting enough to include in the finished article.

Look, this place really does seem a bit better than a lot of employment programs, but I'd like to see some of the Post's other reporters … Like Ezra Klein, Sarah Kliff, and Dylan Matthews at Wonkblog … dig into this as an economics and policy analysis story. What is the state of the art in disability employment? What factors play into how people with disabilities are paid, the hours they work, their opportunities for advancement? How does Obamacare relate to Medicaid, Medicare, and the possibility of private health insurance coverage through an employer? How does all of it rate to the coming Apocalypse for Social Security's Disability program?

In short, why do these always end up being human interest stories, when there's hard news right there waiting to be reported?

Sunday, July 21, 2013


three stick figures posed near red rotary telephone
Ping Your Reps, Following Up
Tim F., Balloon Juice - July 18, 2013

Balloon Juice is a liberal / progressive blog, and this post suggests asking Republican representatives' offices to test how they handle questions about the Affordable Care Act, (a.k.a. Obamacare), but I think people with disabilities should do this with our members of Congress regardless of party. Part of the purpose of this is to see how well members of Congress respond to questions about the Affordable Care Act ... especially if you already know a particular member opposed it. Most members, regardless of party, place a high value on "constituent services", meaning helping out individuals in their districts. However, Obamacare remains a highly politicized law, and there may be a few members of Congress who will cross the line, so to speak, and provide poor or inaccurate information to constituents just to mess with implementation.

Call if you don't know what Obamacare is about, but call even if you do. Be sure to mention your disability, if you have one. And if you have Medicaid, Medicare or private insurance already, don't assume that Obamacare has nothing helpful to you, especially if you work or are constantly teetering on the edge of eligibility for things. This is how calling to "test" your representatives can also be an occasion for some more focused disability advocacy, to help make even the more supportive members aware of our unique concerns.

I also recommend at least one visit to, the big website that will apparently be the hub for Obamacare information and applications.

Saturday, July 20, 2013

Oh, This Is Not Good ...

Man sets off homemade bomb at Beijing airport
Katherine Lackey, USA Today - July 20, 2013

Early reports say the man was "paralyzed", and using a wheelchair.

Airport security is awkward enough for people with disabilities. I dread what the TSA will get up to now with wheelchair-using travelers … or for that matter, travelers with any kind of adaptive gear.


While watching this, I realized that I haven't been properly swimming since I had my tracheostomy in 1985. By "properly" I mean head under water. I think I got into the water a few times over those years, during family reunions at the 1000 Islands region of the St. Lawrence River, but those were just standing chest deep for awhile, not swimming.

I used to love swimming. For awhile when I was a kid, we had a pool in our back yard, and I and my friends would spend hours in the water, goofing around, picking up pennies from the bottom of the pool, miming action-movie fistfights which for some reason were supposed to be way cooler when done in the water.

It has been so long since I effortlessly jumped into a body of water that I don't exactly miss it. I don't yearn to go swimming. But, I am a bit curious now and I might do something I'm surprised I've never done, and Google "swimming and tracheostomy" to see if there are any tips or accessories for swimming without allowing water to leak in.

Friday, July 19, 2013

A "Master Chef"

My brother Ian is a fellow cooking show fan. A couple weeks ago, he told me about a blind chef who competed on the Gordon Ramsay show, "Master Chef" … one show I haven't watched before. I made a mental note of it and promptly forgot. I don't know what made me think of it today, but I finally searched for some YouTube clips, and watched all 57 minutes of this one:

The commenters and even the person who posted the video all keep calling Christine Ha "inspirational". That just grates on me. As I've said before, partly I think it's the poverty of language; people don't know how else to express their admiration. But really, what's the difference between "inspirational", which I can't stand, and "awesome" or "kick-ass"? The point is that her cooking is excellent by any standard, and apart from a tendency towards tears, she's very tough, practical, and competitive.

A few random observations:
  • Christine had a helper for certain tasks, such as gathering ingredients, reading instructions, and walking around the studio. Were the limits of this assistance were discussed on the show itself, with the other contestants?
  • It seems like Christine's confidence developed over the course of the competition.
  • I was impressed with how well Chef Ramsay seemed to understand Christine's adaptive techniques. It seemed to excite him a little to realize how her adaptations were in perfect accord with the best culinary practices.
  • I liked how over time, Christine's fellow competitors would walk in with her holding their arms, hold her cane for her, or whisper a description for her of some visual action taking place on the stage. It looked natural … like what really happens when sighted people get to know and become friends with a blind person.
It seems like this series was a fine balance between sentimentality and high standards. Just when I started to roll my eyes at Christine starting to cry, or at some empty phrase about "overcoming obstacles", the show pulled back and got down to business. The problem with "inspiration porn" is that it lavishes extraordinary praise and emotion on completely ordinary actions and abilities. In this case, the results seem to have more than justified the praise. Christine isn't a blind woman who can cook (Amazing!), she can cook better than most people, blind or not ... (No really, amazing!)

Even though I know the outcome, I think watching the whole season would make the experience even better for being able to see more of the other cooks, all of whom had to be excellent themselves. Unfortunately, Season 3 doesn't seem to be available for streaming. I'll definitely keep an eye out for it though.

Whining, Complaining, and Documenting

stick figure in wheelchair facing stairs1. Whining is when you visit a restaurant you thought was accessible but isn't, and you gripe about it to your friends, blog about it, and add it to your mental list of things pissing you off and stealing your "spoons" today … and that's it.

2. Complaining is when you speak to an employee in the restaurant about the accessibility barriers, and urge that they be fixed.

3. Documenting is when you take available steps to inform others about the barriers, and / or to involve others in an effort to make the restaurant accessible … for instance, posting an accessibility rating on an accessibility website like AXSmap, or AbleRoad, or reporting the details it to your nearest Center for Independent Living or other disability advocacy organization.

Any combination is useful, except maybe doing just #1, which unfortunately is what I think most people with disabilities do ... including me.

Thursday, July 18, 2013

Will They Cheer, Or Will They Laugh?

Support shown for MMA bout between disabled fighters
Steven Marrocco, USA TODAY Sports - July 17, 2013

This sounds okay to me, at least based on the information given in the story. They both strike me as consenting adults who know what they're doing, and I see no evidence that the fight will be promoted as any sort of "freak show" … or no more of a freak show than any other MMA fight. Of course, a lot will depend on how it actually plays out. If the spectators cheer as they normally do, then fine. If they laugh at these two guys, that would change everything.


P.S.: By saying, "This sounds okay to me," I didn't mean to imply that these two fighters need my approval. It's just that the article I read and linked to seemed to imply that there is a potential "issue" here, and I'm saying that for the most part, there isn't. In some fundamental ways, this is not another version of "dwarf tossing".

Wednesday, July 17, 2013

Summer Afternoon Music

It's another hot summer day here … hot enough to keep me inside where I've got air conditioning, wishing it was a little milder so I could be out to enjoy the sun properly. I don't have much to say today, so here's a summery musical interlude, once again from The Onion AV Club's Undercover Series:

Tuesday, July 16, 2013

Remembering The Pakleds

I was listening to Mission Log: A Roddenberry Star Trek Podcast this morning, and they mentioned a point early in the development of Star Trek: The Next Generation, when Gene Roddenberry asked his team to make a list of ways they could have a character with a disability. The writer David Gerrold, who was the guest on the podcast telling about this, said one of the ideas was to create a character with Down Syndrome who would have a "brain augmentation" of some kind. Of course, in the end they opted for a blind character, Engineer Geordi LaForge, played by LaVar Burton, with his iconic "VISOR" device.

I was surprised Gerrold didn't mention the Pakleds. This was a humanoid species introduced in an episode of TNG that I vaguely remembered, called "Samaritan Snare". The Pakleds were was obviously supposed to be an entire humanoid species that was cognitively impaired. In a moment of deep nerdery, I looked up the Pakleds and that episode on the Memory Alpha Star Trek wiki, and found evidence of a possible disability depiction train-wreck. Before I get into it, though, I'm going to watch the episode, so I can comment on it directly, and see if it's as terrible as the write-ups suggest it is.

Monday, July 15, 2013

Mixed Feelings On Another Issue ...

Judge halts Georgia execution over injection issue
David Beasley, Reuters - July 15, 2013

Can I just say that I hate everything about this? Not about the stay ... I'm glad about that ... but about the whole question of executing people who are cognitively impaired.

Much as I have mixed feelings about people with disabilities running for high office who I disagree with about everything, the issue of executing people with cognitive impairments confuses the hell out of me. I oppose the death penalty entirely, but the pedantic hemisphere of my brain can't stop quibbling about the arguments that have to be put forward in order for laws to say that it is okay for people with "normal" intelligence, but unconstitutional for people who are "mentally retarded". I understand and sort of buy the idea that comprehending the crime and the punishment is the key here, but I still think it is hair-splitting, and in many cases may not even affect reality. It may be harder to understanding things if you have an IQ below 70, but surely it isn't a bright line divide. If a person really can't understand basic moral concepts about killing and beating people, or about punishment of misdeeds, then what does that say about his or her ability to make other decisions, or about his or her agency ... or of other people with cognitive impairments?

On the other hand, this may be a rare kind of case where the law actually does reflect an instinctive moral revulsion. For a sample of that I recommend the Lars Von Trier film Dancer In The Dark. Fair warning though, it is deeply weird and very upsetting.

The Texas Candidate

AG Abbott formally kicks off gubernatorial bid
Houston Chronicle - July 14, 2013

A wheelchair user is running for Governor of Texas.

It's a good test for my disability solidarity. I despise his political philosophy, so I hope he doesn't win, but whatever the outcome, it will be interesting to see how Abbott's disability factors into his campaigning, his opponent's strategy, and the public's reaction. Apparently, he's favored to win, which I guess must say something good about changing attitudes towards disabilities.

It sounds like he cited his injury and disability in a pretty standard, non-controversial way … a turning point in his life, challenges overcome … but I wonder if he'll go further than that. I actually kind of liked his bit about being a politician with a "spine of steel". I wonder if he has more developed than usual positions on disability issues. Would he be more progressive on those matters, or stick with across-the-board conservatism? Will anyone ask him?

It could be fun to watch.

Sunday, July 14, 2013

I Love A Parade

Disability Pride Parade to step off in Chicago
Karen Meyer, ABC Local - July 14, 2013

I'm pretty sure this is the first time I have heard of anything like a "Disability Pride Parade", or thought of it as an idea. I can't believe it isn't a more common thing. I'm not big on flashy protests. I'm not against them, it's more of personal dislike. But I could get behind something like this once a year. Sure, it's kind of copycatting the LGBT Pride tradition, but a disability version, done right, could be unique enough to become a strong tradition of its own, with a distinctive message.

The Zimmerman Verdict and Ableism

I realize that claiming a similarity between people with disabilities and Trayvon Martin is potentially volatile and risks overstatement. This is an analogy that I'm still working through, so please bear with me.

One thing the Zimmerman verdict suggests is that young, male African-Americans have a very narrow range of acceptable responses to obnoxious, possibly threatening behavior. If you don't react exactly correctly … if, for instance, you lose your temper and maybe get a little punchy yourself … then it's okay for the other person to kill you. You either show infinite patience and behave absolutely perfectly, or you're toast. I'm no legal expert, but it seems like Trayvon Martin made the "mistake" of confronting the man he probably thought was stalking him or trying to intimidate him. He paid for this rather mild and understandable departure from purely rational behavior with his life.

It's the same for people with disabilities, though not the being killed part. When people with disabilities encounter obnoxious behavior or discrimination from just about anyone, the acceptable reaction is to remain passive, make a joke of it, reassure everyone that "it's okay", or just ignore it. Any other response is met with shock, claims of hurt feelings, and a quickly growing reputation for bitterness and "inappropriateness". When this happens in the context of dealing with any kind of officialdom … human service agencies, housing programs, doctors, teachers, counselors, and government officials … the consequences are worse. We are quickly labeled as either belligerent, mean, noncompliant, or "borderline personality". The exact terms depend on the field involved, but the result is a kind of black-balling that can have massive social and economic effects. We aren't shot like Trayvon Martin, but good luck the next time we try to get a problem resolved, obtain help in a pinch, or even get proper medical attention.


Postscript: Ta-Nehisi Coates posted a very good summary of his take on the Zimmerman verdict.

Saturday, July 13, 2013

Not So Secret?

The Myth of FDR’s Secret Disability
Matthew Pressman, - July 12, 2013

A guest writer at offers an interesting take on whether and how President Franklin Roosevelt's disability was concealed. The writer confirms that there was concealment, but suggests that the idea of a "gentlemen's agreement" among the press to not photograph or mention FDR's disability grew out of our present-day cynicism about today's "gotcha" journalism. We like to think that in the "good old days", reporters had restraint and respect that they lack today, but in reality, they were plenty ambitious and cynical then, too.

I would go a step further and say that maybe we also underestimate the sophistication of ordinary Americans in that time, and assume most people didn't know about the President's disability. Like I said earlier this week, I just have a gut feeling that most people knew on some level that Roosevelt's polio wasn't completely "beaten". Multi-layered thinking wasn't invented in the 60s. People in the 30s and 40s might have had access to less information overall, but they weren't stupid or simplistic, at least no more so than today. I think it's perfectly possible that a nation desperate for leadership in the Great Depression would choose to overlook something like physical impairment in someone they otherwise felt was "the man of the hour." Overlooking doesn't mean not knowing.

I wonder if in some ways, attitudes towards some disabilities might have been healthier than they are today.

Friday, July 12, 2013

More Lego!

This went up on YouTube many months before AmputeeOT's "Lego Leg" video. It has a lot of views, but according to the stats history, there was no spike at all in connection with the Lego Leg video. I would think it would be a natural related video suggestion.

The chair itself is pretty cool, and looks to be about as practical as the Lego prosthetic.

One thing about disability awareness gimmicks is that it is very hard to predict how people will process them. People seem just as likely to come away with a message of pity or sympathy as they are to see capability and empowerment. You can see that in the mix of comments on AmputeeOT's videos. I wonder what long-term effect these Lego videos will have on people's perceptions about disability and adaptive equipment.

In Which I Succumb To Godwin's Law

I'm reading "Winter Of The World: Book Two of the Century Trilogy" by Ken Follett. The Century Trilogy is a series of historical novels that follow the intertwined lives of about a dozen characters as they go through the major historical events of the century. The second book covers the Great Depression and the Second World War.

At the moment, I'm in the middle of a section of the novel that dealing with Aktion T4, the Nazi program of deliberately killing people with disabilities. I knew the main details of this aspect of the Holocaust, but it's interesting to see characters I've come to know through other depicted events suddenly dealing with disability … disability as a social and political matter, not just medical. The main thing I'm curious about is whether the author will suggest that Aktion T4 was a rare "misstep" for the Nazis, in terms of domestic politics. I have read some accounts suggesting that the Nazis actually had to back off their "euthanasia" policy, or at least make it more secret, because they angered too many "good" Germans … including parents who might have previously been Nazi supporters. So far, the novel has hinted at this … focusing particular attention on a Catholic priest who has started making waves about the issue. This also highlights the extent to which many of the mainstream, "respectable" Christian denominations either supported the Nazis or cut some kind of informal deal with them in order to avoid stronger persecution.

So far, the novel hasn't fleshed out any of the theories or justifications that underpinned Aktion T4, just a brief reference to the high cost of care. My understanding is that there were a variety of "ideas" behind the "program".

I admit that I can't help thinking about this when I hear debates over "assisted suicide" and the "right to die". I agree that today, these issues are mostly about personal choice, not governent-sponsored extermination. On the other hand, I've heard plenty of arguments over this evolve towards issues of cost, to families and to society, so I don't think the comparison is too radical. Godwin's Law states that the longer an online debate goes on, the more likely it is for someone to resort to a Nazi Germany analogy. Nazi analogies are too common and easy to draw, but occasionally, they actually are valid.

Thursday, July 11, 2013

Judging Disability Onscreen

Superfest Disability Film Festival Presents "The Dissies"
Paul K. Longmore Institute on Disability at San Francisco State University

Catherine Kudlik, Disability Remix Blog - July 9, 2013

This sounds like a blast, and I haven't visited San Francisco for years … Maybe after I finish this post I'll just check, just in case there are cheap fares to be had.

pen and ink drawing of old-fashioned movie camera
How do I judge disability movies and TV shows? I've been thinking about this, and here are the criteria I think I use:

Politics - Does it support or undermine an agreed-upon set of social or political goals for disability rights and social equality?

Offensiveness - Does it trigger a gut-level, involuntary feeling of personal offense and disgust in us as people with disabilities?

Realism - Do the disabled characters look, sound, and behave like people with disabilities do in real life?

Fresh or Cliché - Do characters and plots feel unique, personal, and three-dimensional, or cliché, generic, and flat?

Human or Objectified - Are we brought closer to disabled characters or distanced from them? Are they people, with feelings, motivations, and free will, or just objects to which things are done?

I listed these criteria from least important to most important, though I do use all of them. To this list, I would add another two other principles that aren't specific to disability portrayals only

The first is "Show, don't tell." That means morals and lessons shouldn't be stated like an essay, but demonstrated by what happens in the story. I don't want to hear people make speeches in the middle of conversations. If they have to explain something to me, in the audience, they should do it as naturally as possible to other characters on the screen. I'm willing to sacrifice a lot to "Show, don't tell." I'd rather miss "the moral of the story" entirely than sit through a stilted, clunky, "Afterschool Special" of a story.

The second general principle is to take into consideration "What's the film / TV show trying to do?" In practice that means a negative or even horrific depiction of disability might be "good", if the character feels real, or if the scenes serve a "good" purpose. We might weep and feel emotionally devastated by a movie that shows a disabled character dying from abuse or neglect, but if the character is three-dimensional and human, and if the story teaches us something about a real and important issue, then we might consider it a "good" portrayal. The flip side of this example might be if we never get to know the disabled character much, and his or her death functions mainly as the trigger for someone else's emotional breakdown or revenge-fuled rampage.

Wednesday, July 10, 2013

How Much Would It Take?

British flag
Labour calls for radical reform of social security for disabled people
Randeep Ramesh, The Guardian, UK - July 9, 2013

Awhile back, I was reading a small flurry of articles on big changes in the Great Britain's disability service programs. It was hard to figure to figure out what was going on, but it seemed like the UK system in general was simpler, based more on cash support than services, and possibly more flexible. The problem seemed to be that the Conservative / Liberal Democratic coalition government wanted to make the system a bit simpler still, but also reduce its expense, thereby cutting overall support individuals receive.

Puzzle piece with dollar sign
Now it looks like the opposition Labour Party has it's own proposal, and it seems to more clearly address simplicity, while reducing one what sounds like the system's most annoying aspect … people with disabilities needing to prove their impairments again and again to different departments. The Labour proposal would apparently consolidate all support into "lump sum" payments, out of which each individual would pay for whatever services they needed … personal care, rent, food, adaptive equipment, counseling, training, whatever.

That sounds good to me, as long as the individual budgets are the right amounts, and based on individual needs, not a cookie cutter formula.

If you have a disability, how big of a support check per month would it take for you to be able to buy the disability-related support and assistance you need?

Who Knew? I Really Want To Know

Charles Wilson, Associated Press / Huffington Post - July 9, 2013

The article mentions the President being "pushed" in his wheelchair, but it looks to me like he's wheeling himself; in the video, I think I can see his arms and elbows swinging back and forth.

photo of president roosevelt in a wheelchair, dog on his lap, little girl by his side
Everything you read about it says that the President kept his disability a secret, but that just doesn't sound possible. My parents grew up in the 1930s, and my Mother, at least, always told me that people knew FDR used a wheelchair. It wasn't a secret, it just wasn't discussed. I wonder if that's really how it was. I really need to read "FDR's Splendid Deception", which I believe is the definitive book on the subject.

If Roosevelt's disability was a taboo topic but widely known, that would suggest that people had much more complex ideas about disability than people today give them credit for. Roosevelt was already famous when he got polio as a younger man, so people knew he'd had it. People certainly knew a lot about polio in general … a lot more than people know these days. So, wouldn't they have assumed that Roosevelt had to have at least some residual impairments? Maybe they didn't know the details. Maybe they didn't know he was fully paralyzed. They had to know something, and I suspect there was kind of an unspoken deal between the people and their President … an agreement not to acknowledge or discuss the disability.

Anyway, that's why I need to read the book, because I really am curious about the nature and extent of FDR's so-called "deception."
"FDR's Splendid Deception: The Moving Story of Roosevelt's Massive Disability-And the Intense Efforts to Conceal It from the Public", by Hugh Gregory Gallagher, 3rd Edition, 1999

Tuesday, July 9, 2013

Unemployment Followup

I reread what I wrote yesterday about different kinds of unemployment / employment figures. It has occurred to me that the two kinds of figures suggest two kinds of employment goals for the disability community:
  1. More people with disabilities working, and
  2. More people with disabilities actively looking for jobs.
In theory, we should try to reduce the unemployment rate for people with disabilities to be closer to that for non-disabled people, while at the same time, increasing the number of people with disabilities looking for work. Initially, this would actually raise the unemployment rate, because more people would he counted who are looking but not yet hired. The goal would be to close both gaps.

Does that make sense?

A Bio And A Blog

Being A Blind Teenager
Kody Keplinger, Disability In Kidlit - July 8, 2013

Yesterday, I read this fantastic short biography by a Young Adult (YA) fiction writer, who also runs a collaborative blog of YA writers … Disability In Kidlit, described as, "Reviews, guest posts, and discussions about the portrayal of disabilities in MG/YA fiction".

Here are two of the best bits from the piece:
"That’s the thing about disability, I think. You’re a normal person, you experience normal things, and then, every once in a while, you hit that wall. That reminder that you aren’t quite like the majority of your peers. Most of the time it’s small things ... but it can still hurt like hell." 
"Before I wrap up here, I want to note that none of the typical “blind person” cliches fit me. I am not a musician, I don’t feel people’s face (eww, so weird!), and my blindness really played a very small part in my life. It occasionally impacted my friendships, it sometimes changed the way I did things in class, but for the most part, I was your average middle or high schooler. Your average middle or high schooler who just happened to use a cane and push around a cart with a big CCTV on it."
One day I hope to invite other bloggers to contribute to this site, so I'm encouraged to see a collaborative blog in the disability field.

Monday, July 8, 2013

AmputeeOT Followup: "Devotees"

One of AputeeOT's videos is about "Devotees", people who are sexually attracted specifically to people with disabilities.

I had heard before of the fact that there are people who are attracted to people with disabilities specifically because of their disabilities, but I didn't know there was a term for it, or that it was any kind of recognized subculture. My first reaction was that it's more like a "fetish", and therefore mostly a negative thing, at least from my point of view. I still feel that any such attraction worthy of a name is probably more of a fetish than a milder interest. I also suspect that most "Devotee" attention is objectifying more than appreciative. That is, it is an attraction that is very narrow, that doesn't involve much personal connection, and that turns people with disabilities into objects of highly focused interest rather than appreciation of the whole person.

On the other hand, maybe that's not saying much. A lot of sexual attraction is objectifying. Are guys who are heavily into breasts or feet, or women who are into big muscles or mustaches (or breasts or feet for that matter) all that different from people who are attracted to amputations or paralysis?

If these attractions are just the first step … the hook if you will … that can lead to a fuller connection, then fine. It's when they stay laser-focused on these particular aspects that the attraction of Devotees would be troubling to me, and unwanted.

That said, I don't object to Devotees per se. I think it all depends on behavior and whether the interest … or fetish … leads to real human connection.

Here's what Wikipedia says:

Note: Wikipedia identifies three sub-groups, Devotees, Pretenders (people who like to pose as disabled), and Wannabes (people who actually want to become disabled), abbreviating them together as DPWs.

A couple of quotes that stood out for me:
"Despite the explosion of the DPW Web [Internet sites], many disabled people remain unaware of the attraction. Those newly introduced to it often report initial alarm and deep shock. Subsequent reactions (often after further research) appear to involve deep introspection and an eventual revision of attitudes." 
"The [disability rights] movement perforce backs the DPW stance that the disabled ought not to be branded unattractive and asexual, but by the same token resists suggestions that they ought to welcome the attentions of a sexual minority. If it has any real stance on DPWs, the movement is generally negative, seeing them as unacceptably needy and fetishistic. Despite early hopes that DPWs were welcome allies in the battle against lookism, the movement has found that they do not offer any escape from the tyranny of visual norms; they merely pile bizarre standards atop mainstream ones. In addition, the 'hero adulation' and protectiveness elements of the attraction are ideologically most unwelcome to the movement."
Weird, wild stuff … sometimes, but not necessarily, in a bad way.

Unemployment Rate? Which Unemployment Rate?

Today I think I finally understand something that's been mystifying me for years. Why are quoted employment and unemployment figures for people with disabilities all over the map?

For at least the last 20 years, I have heard figures between 60% and 75% cited as the unemployment rate for people with disabilities. Those are very high figures, yet sadly they don't seem out of line with reality. I've quoted figures like that to all sorts of audiences, and nobody ever questioned me about them. The high unemployment figures may or may not seem "right" to people, but they always seemed to be accepted as more or less accurate.

Then a couple of years ago I started seeing reports of unemployment rates more like 20% or less. That's quite a difference. Which figures are correct?

I figured these had to be two entirely different measures, encompassing different populations but under similar-sounding labels. But I could never find an explanation, until today. If you want to get a more accurate and nuanced picture of employment and unemployment of people with disabilities … and you don't mind reading figures multiple times and thinking hard about statistics … Read this June 12, 2013 release from the Bureau of Labor Statistics: Persons with a Disability: Labor Force Characteristics Summary.

Yes, I know … snooze.

The summary worth studying, because while the situation is bad, it is comprehensible.

First of all, it's important to know that the "Unemployment Rate" you hear every month on the evening news is a more narrow measurement than the simple term suggests. It is the rate of joblessness only among people who:

a. Are employed, full time or part time, or
b. Are available for work (i.e., not retired or acutely sick), and
c. Have looked for work in the past 4 weeks.

So, the unemployment rate for people with disabilities in 2012 was 13.4%, compared to an unemployment rate for people without disabilities of 7.9% in the same year. This does not include retired people, children younger than 16, or anyone unemployed who has not looked for work in the 4 weeks before being polled. So, it does not count people with disabilities who … whatever their thoughts and long-term dreams about working … are essentially not looking for work.

On the other hand, there's the "Employment-Population Ratio" ... a measure of how many people are employed ... which in 2012 was 17.8% for people with disabilities, and 63.9% for people without disabilities. These figures do count retired people, children, and anyone of working age who is not employed, for whatever reason. These are more like the figures I used to hear.

The narrower comparison, which focuses just on people who are actively in the labor market … employed or actively looking for jobs … indicates that people with disabilities have a 5.5% higher unemployment rate than non-disabled people. (13.4% disabled unemployed minus 7.9% non-disabled unemployed).

By the broader measure, including people who are unemployed for any reason, including age and short or long-term choice, shows an employment gap of 46.1% between disabled and non-disabled people, if you count everyone. (17.8% disabled employed minus 63.9% non-disabled employed). That gap represents people with disabilities who can't find work but seek it, but also those too young or too old to work, and people who for whatever reason are not actively looking for work when the poll is taken.

Which kind of measurement is the most informative?

Actually, I think you need them both. The reasons why some people with disabilities are employed and some are not are very complex, involving for each person a unique mix of the disability itself, plus training and credentials, past work experience, references, community connections, motivation, perseverance, the state of the local and national economy, and the rise and decline of specific industries and professions. A person with a disability who hasn't looked for a job in over a year … and may even tell you he or she isn't interested in working … may in fact have in mind various scenarios for eventually being employed. So, it's important to know the absolute number of people with disabilities who are unemployed, and be able to compare that percentage with the percentage of non-disabled people who are unemployed. The narrower figure, in turn, gives you a picture of the odds you may face  once you decide to look for working a focused way … as opposed to just thinking about it.

Both measurements also confirm what I'm pretty sure we all knew, which is that there is an employment gap for people with disabilities that can't be fully explained by our disabilities themselves. It is not a natural gap. It's a gap that shouldn't be there at all.

Sunday, July 7, 2013

My Disabilities

Five months and 130 or so blog posts after starting this thing, maybe I should tell a little about myself and my disabilities. First the disabilities:

This condition can have different causes and an assortment of affects. For me, Arthrogryposis manifests itself in:
  • Muscle weakness and stiff, less flexible joints.
  • I'm short ... 4'1".
  • Significant spine curvatures, both front to back and side to side.
  • Reduced lung capacity caused by the spine curvatures.
  • My type of Arthrogryposis is genetic, which is one of the rarer kinds.
From birth to around the start of my teens, the most significant affects involved my feet and legs, which initially were in a state that would have made it impossible for me to walk. Physical therapy, multiple surgeries, and and an assortment of
medieval torture devices braces very early on were successful, and I started walking at age 3. By the time I was 8 or thereabouts, the condition of my legs, feet, and ability to walk were no longer significant issues.

As I grew, my spine curvatures increased and the impact on my lung capacity "took over" as the most prominent aspects of my condition, which they remain to this day.

When I was 9 years old I had surgery to fuse my spine and attach a supporting rod. This mostly stopped the increase in spine curvature where it was, which probably means that my condition today is better than it would have been without the surgery. The fusion and rod also further limited my growth, and of course, I can't bend my torso. My spine was never all that pliable though, so I rarely notice this lack of flexibility. That old piece of advice, "lift with your legs, not your back", is unnecessary for me.

Despite the surgery, I still have low lung capacity, which results in significantly reduced endurance for physical activity. Mostly this means I can't walk long distances. I can walk the length of our local shopping mall, but I have to stop six or seven times to sit and rest, and most days I make good use of handicapped parking. Also, due to sleep apnea, I use a ventilator at night, attached to a tracheostomy. The ventilator and trach themselves require care and maintenance, although they are fairly easy to deal with, and don't restrict travel. Having a trach does increase my risk of lung infections, which has over time caused disruptions and probably some long-term effects. The kind of trach I have can be capped during the day, so I have no trouble speaking.

When I was in college, before I had learned to drive an adapted car, I used a mobility scooter for "walking distance" travel. Once I started driving, I mostly gave up the scooter, though I still have one I occasionally use on trips and outings with lots of walking and no place for driving.

For more details on dealing with low stamina, I recommend reading about The Spoon Theory. My symptoms are a lot different, but I do have to hoard and ration my spoons carefully, every day.

The restricted and distorted space inside my torso also restricts my stomach and digestive system. I can eat anything I want, but not much of it. It's sort of like an involuntary version of one of those gastic bands people get to lose weight. As a result, I've always been shockingly thin. I'm sure that has also further decreased my muscular development. Still, it doesn't affect me much beyond my appearance, or on Thanksgiving when my eyes are bigger than my stomach.

My general muscle weakness affects my daily life in various ways that I've adapted to, but which still occasionally causes unexpected stumbling blocks. This is especially true with my arms, hands, and fingers. Mostly it comes up when doors are hard to open, and when various mechanical controls are stiff or hard to operate … doorknobs, switches in awkward places and positions, and of course, mayonnaise and spaghetti sauce jars.

I experience some back pain, though far less than one might expect to look at me. Advil does the job.

My overall appearance is noticeably different, which does effect my social interactions, though the effect is usually short-term, at least as I experience it. The effect on my own body image and sex life is a question I'm only belatedly starting to think about seriously.

Another time I'll share some of the non-disability aspects of my life.