July 26, 1990

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

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

First, the half empty part of the glass …

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

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

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

Still, the glass really is half full ...

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

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

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

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

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

My prediction for the ADA's future?

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

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

"Disabled" Is Fine With Me

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

Three Continents Watson - July 23, 2013

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

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

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

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

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

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

Take 'Em To Court

Feds Charge Florida Over Mishandling of Disabled Children

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

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

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

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

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

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

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

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.

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?

Obamacare

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 Healthcare.gov, the big website that will apparently be the hub for Obamacare information and applications.

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.

Swimming

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.

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

1. 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.

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".

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: