News, Just A Teaser

I am delaying my usual Monday summary of disability-related news stories until tomorrow (Tuesday). However, I do want to share two news stories about the same topic … a new projection that Social Security's Disability Trust Fund will run out in 2016. I'll have more to say about this, and you can also read some past blog posts that touch on the subject here, here, and here.

My short take is that the problem is somewhat different than how it is portrayed, and that we need to start now to make our case that helping people with disabilities by giving them money is good for us, and for the country. It might even be worth a slightly higher portion of our GDP than we spend now.

Federal disability trust fund on the brink

Tami Luhby, CNNMoney - May 30, 2013

Federal disability program running out of money

Donna Freedman, MSN Money - June 3, 2013

tumblr

I just set up a "Disability Thinking" tumblr blog to go along with this blog and the eventual "Disability Thinking" website. For the time being, I'll just be adding links to the blog posts I make here. If and when I figure out exactly what tumblr is uniquely good for, I might get more elaborate with it.

Quote / Unquote

It occurred to me the other day to add a slideshow of disability-related quotes to spruce up the Home Page of Disabilitythinking.com. So, I Googled "disability quotes" and started reading. The results were disappointing.

I found six or seven different quotation collection sites that produced disability-related quotes, but the collections are so similar that I suspect that most of the sites did the same thing I did and just copied all the quotes they found. They're all the same. That would be okay, if the quotes were good, but to my mind the collections are … lame. I found a few interesting quotes … funny, provocative, offering fresh insights or perspectives on disability … but most of them were either blandly uplifting, just plain wrong, and often. For example:

"The only disability in life is a bad attitude." - Scott Hamilton

Far be it from me to question the philosophy of a retired figure skater, but this is wrong both literally and conceptually. I get it. Having a "bad attitude" can limit your own possibilities, and other peoples' bad attitudes can have a limiting effect on you. But real disabilities create real barriers that although worsened by bad attitudes, can't be completely undone by "positive" attitudes. And that's the point of this quote, isn't it? You can't change your inability to walk, hear, or see, but you can change your "attitude", so it is empowering to think that if you just adopt the right mindset, your disabilities won't matter … won't really be disabilities anymore. It's a nice idea, but most people with disabilities know that it doesn't work that way. A positive attitude helps, but it doesn't cure.

Statements like this bother me because they minimize and trivialize disabilities. Not that I want to view my disabilities as all-powerful or insurmountable, but like it or not they exist and they will always have an effect. It subtly encourages people to conclude that if you have a disability and are having a hard time, that it's your fault because you must have a "bad attitude". What constitutes a "bad" attitude anyway? If you complain about inaccessible restaurants or poorly-run transportation services, are you displaying a "bad attitude", or are you being a pro-active advocate? If you are always cheerful and passive in the face of discrimination and neglect, isn't that a "bad attitude" of sorts?

The other thing that bothered me about so many of the quotes I found is that like the Scott Hamilton quote, they are almost completely abstract. They are nearly meaningless collections of words in which one fuzzy, debatable concept is used to bolster another. I read them, and the only thing I can say to them is "Yup," and "So what?"

I'll keep looking, though. Maybe I need to collect some quotes that aren't explicitly about disability, but speak to some concrete truths about the disability experience.

If you have a favorite disability quote, please share it in the Comments.

This Could Be Good

One of my favorite comedians, Patton Oswalt, tweets that he likes the look of the new Michael J. Fox show, "The Michael J. Fox Show". That recommendation means something to me, and after watching the preview trailer, I think it might end up being a better disability show than the new "Ironside".

"Can you not have a personal victory right now? We're starving!"

Heh!

Change of Plan ...

I decided not to go to Montreal today. As the kids these days say, I'm not feelin' it. Everyone has that feeling sometimes, but I think it's probably a more frequent feeling for people with disabilities. Even fun stuff requires extra layers of planning and gallons of additional energy, and some days it just doesn't seem worth it. Sometimes that's depressing, but quite often it isn't at all. When I can easily envision a really pleasant, rewarding day doing something less taxing than what I'd originally planned, I'll make the last-minute change. It also helps when the original plan was solo, so calling it off or postponing doesn't affect anyone else.

Maybe I'll go sometime next week, on a weekday when the border isn't as busy and there might be fewer other tourists about.

"Pilgrimage"

Photo by Laslovarga via Wikimedia Commons

I'm planning a day trip to Montreal, Quebec tomorrow, and I'll probably visit St. Joseph's Oratory.

St. Joseph's Oratory is a massive domed basilica, built near the top of Mount Royal, smack in the middle of the Island of Montreal. The dome dominates the Montreal Skyline, so much so that when I was a kid, my parents used to offer a quarter to the first person to spot it on the horizon whenever we drove up to Montreal. I'll check for sure tomorrow, but I'd guess that the dome is first visible from about 15 miles away. Wikipedia tells me that St. Joseph's was built between 1904 and 1967, so it was already retro from the day the first brick was laid.

St. Joseph's has always been a pilgrimage site, where according to legend, people with disabilities are healed after climbing … or crawling … up the basilica's long approaching steps. Inside, there is a wall covered with a display of hundreds of crutches supposedly left by pilgrims after their miracle cures. It's kind of a garish, ridiculous-seeming idea, I suspect even for many Catholics (which I am not). But the story's cheese factor is lessened by the basilica's outside grandeur, and most of all by its interior, which is quiet, austere, and haunting … the very opposite of garish. It is the only place of worship that I have ever been in that has come close to spiritualizing my skeptical, materialist heart.

I will NOT be attempting an actual pilgrimage up those steps. If there's some sort of rack inside that would straighten my back and make me taller, I'll give it some thought.

St. Joseph's Oratory

That Uncomfortable Pause

Sometimes Ableism has a logical, if not admirable explanation. But sometimes it starts with surprise and distraction.

I don't think I look especially shocking. I'm short, like "little person" short, and my spine is severely curved. I've got big years, too … Barack Obama big … though it's hard to say how much of a factor they are. I'm funny-looking, but not extremely so. Most of the time when I meet someone, they don't skip a beat. Once in awhile, I meet someone for the first time and I can just tell that my appearance has thrown them. They meet me, and internally they're saying, "Whoa, what?" Most people kind of blink, maybe stutter a moment, and move on. Just a little brain fart.

A few people really get stuck. Maybe they have questions about what they are seeing and they just can't let go. Maybe they're afraid they'll say something insensitive. They might be thinking a little too intensely about whether the tone of their voice or their handshake is appropriate ... or wondering what IS appropriate for someone like me. For me, the biggest "tell" is a slight physical reserve,  a withdrawing into their own space, combined with a distracted, choppy, or stunted flow of conversation. It's really noticeable when I've heard the person speak very fluently, professionally, or charmingly to others, and with me they blather, hesitate, or freeze for just a few more seconds than is comfortable for either of us. I almost never see hostility. They smile and say the correct things, but either they are trying to limit the interaction, or they are only devoting half of their mind to the conversation. The other half is thinking "What's the deal with him?", and "I hope he doesn't notice how nervous I am." The phrase "deer in the headlights" might have been invented from this experience.

Like I said, it doesn't happen often. But when it does happen, it's the closest thing to pure "ableism" I experience. I can't say I'm exactly hurt by it, but it is a reminder. "Oh yeah, I'm different. I almost forgot!" It reminds me that there are probably a lot of times when I think an interaction is about one thing, when for the other person, it's about that thing AND it's about meeting a weird person they can't help looking at and wondering about ... and feeling uncomfortable about looking at and wondering about.

Ableism is a distraction for both sides, I guess.

A Thought On The Roots Of "Ableism"

A big part of what drives "ableism" is people's natural reluctance to be drawn into the lives of people who seem to be "needy". Most people are happy to "do a good turn" now and then, (to borrow from Scouting), but when the need appears open-ended, they feel a strong desire to back away.

This plays out for people with disabilities in two ways. When our disabilities are well-understood, and our needs very specific and easy to meet, people are generally nice, helpful, accommodating. When our disabilities are complex, and the full extend of our needs unknown, people shy away, avert their gaze, and look for a way to escape from the perceived gravitational pull of our bottomless need.

If this is true, it suggests two things. First, we should be more open about telling people what our disabilities are, with simple, brief definitions and descriptions. Second, whenever possible, our requests for help should be specific, clearly defining what we expect the person to do and telling them how much it will cost or how much of their time it will take.

What's The Deal With Kevin?

Last week's series finale of "The Office" reminded me of one of the show's smaller, but to me most interesting running jokes: is Kevin "retarded"?

To summarize:

Kevin is an utterly ordinary-looking guy … somewhat overweight, balding, dressed professionally but forgettably. His voice is kind of slow and deep, which contrasts with the childish enthusiasm with which he often expresses himself. And his enthusiasms always seem to involve basic, uncomplicated pleasures … cookies, M & Ms, his recipe for chili, and occasionally the prospect of female companionship. He also frequently misses the point of things, and the overall impression is that he is either unusually dull-witted, or possibly that he is in fact a high-functioning cognitively impaired man.

For much of the series, the question is implicit but not stated … and carefully left unanswered, maybe unanswerable. Then Holly Flax joins the Scranton branch of Dunder-Mifilin as a new manager. With just a hint of mischievous prompting from Dwight, she fully assumes that Kevin is impaired, and we all cringe as she openly treats Kevin the way a semi-enlightened, well-meaning, and a bit klutzy HR Manager would … with a cringe-inducing mixture of encouragement, condescension, and forced normality. We sense right away that Holly's got it wrong somehow but how wrong is she really? Do we cringe because she is mistaken, or because she's so blunt and unselfconscious about it? Would her condescension be any more or less appropriate whether Kevin was "retarded" or not?

Later on in the series, the writers seem to weigh in, making Kevin even stranger, and occasionally implying that he really might be cognitively impaired. For instance, there's a scene where it appears that Kevin doesn't know the alphabet. Yet, there are just as many, if not more hints throughout the series that he'd just slow spoken and a little weird.

It's all funny, and as with most of the humor on "The Office", it's funny because it's 1. familiar, and 2. based on embarrassment. Whether or not Kevin the character was ever intended to be "retarded", he causes us to ask the same uncomfortable questions we do in real life. What is cognitive impairment? How are we supposed to act with people who have it? How is it different from just being "stupid" or "strange"? Is it okay that we're even thinking about it? If we really wanted to know, who would we ask? How would we ask? I think we are laughing at Kevin, but also at ourselves, because we feel foolish and dumb about the whole thing, and we can all remember being in situations like this in real life.

We're not sure, and we're not sure that if we were sure, what difference it would make. We want to know for sure. We feel we shouldn't want to know. But we really do ... you know ... want to know! It reminds me of another sitcom for the ages, "Seinfeld", where the characters, after vehemently denying that they are gay, compulsively add, "Not that there's anything wrong with it!" I think we are definitely at a similar stage with cognitive impairment. We are mostly enlightened, but only mostly.

By the way, while I was searching in vain for a clip of the first Kevin and Holly scene, I ran across this blog post from some sort of Human Resources Guru:

Well, Isn't That Special

"That's what she said!" - May 22, 2008.

There's also a running poll on this question at at website called Fanopop - "Is kevin retarded?" And, I found another YouTube clip not worth sharing, but with the awesome title, "Kevin is NOT retarded!"

Disability News

Judge: Hollister Clothing Unfriendly to Disabled

Steven K. Paulson, Associated Press - May 22, 2013

The Justice Department rarely pursues Americans with Disabilities Act violations on accessibility, so its encouraging to read this. It's particularly sweet for two other reasons:

1. As soon as I saw the name "Hollister" I immediately knew what this was about, since I've been bothered by Hollister's layout at my local mall for years. As is often the case, the article doesn't explain well exactly what the problem is, but basically Hollister's official franchise "look" includes installing two steps up at the front entrance. That's right, in an indoor shopping mall … where no-step entry is a universal accessibility plus for people with disabilities … Hollister goes out of its way to custom install steps to get in. They think it looks distinctive or vintage or something.

2. Mind you, they do also include a more accessible entrance to the side, so technically they are wheelchair accessible, at least enough to get inside. However, their interiors are typically very crowded, and besides that, the accessible entrance isn't readily visible, and it just seems ridiculous to design a store that looks inaccessible, even if it isn't. "Unfriendly" is exactly the right term. It's like a store posting a "Whites Only" sign, and then another sign below it that says, "Just Kidding!"

I like to think that the Justice Department took this case because it just plain pissed them off.

Mentally Disabled Couple's Legal Battle Ends with New Home

Kevin Dolak, ABC News - May 23, 2013

It looks like there was a pretty quick, pretty good outcome to this story from a couple weeks ago. The (now) happy couple will apparently be moving into a new "home of their own". I'm not sure what that means, though. Is it a house or apartment just for them, or will there be other unrelated residents? In other words, is it going to be "their home", or another type of "group home?" The article does provide a bit of an explanation of why the agency had a problem with the couple living together. Apparently, because both of them need help with cooking, cleaning, and other daily living tasks, then they can't take care of each other, and are therefore somehow not able to live together as a married couple. But that's true of all residents of a group home. They live together under the same roof, and all of them need help with daily living tasks … that is why they are there, supposedly. The only difference here is that the couple wants to share a bed, and perhaps have some slight changes of routine and privacy boundaries to underscore that they are a family unit, not just housemates. None of which prevents both of them receiving help from personal care staff.

In some ways the agency's original position reminds me of people who object to gay marriage. Biblical interpretation aside, its partly about differences in how people think of marriage. Is it simply cohabitation with a legal overlay? Is it a holy institution with mainly spiritual components? Is it about love between two people? Is it about recognition and accommodation by the rest of society?

I hope to find out that the Forzianos really do have their own place … their own household where they have the help and support they need, but where they direct the staff, rather than the staff directing them.

State's disabled could suffer if home care rules change

Chris Megerian, Los Angeles Times - May 26, 2013

This is a good example of an issue that has massive consequences for people with disabilities ... with implications for life, death, and basic freedom … but is completely unknown outside of the disability community. It threatens to bring to a head a long-simmering conflict of interests and priorities for two groups that very much need each other, and are normally natural allies … people with disabilities who use home care to maintain their independence, and the home care workers who earn wages to serve their needs. I'm glad the news story highlighted a man who initially supported unionizing of home care workers, even though he's now rightly concerned about what might happen as a result.

This is also an important example of how a single policy decision … and one that seems completely fair and right … can have devastating consequences for people who don't at all deserve it.

Until Monday ...

I'm taking a blogging break while I work on other parts of Disability Thinking. Unless something really interesting happens in disability world, blog entries will start again on Monday, May 27.

Update: Oscar Pistorius

Pistorius Will Not Compete This Year

Reuters, New York Times - May 21, 2013

I know murder trials take a long time, and people get out on bail sometimes, but I'm surprised that anyone was even thinking about Pistorius running races while awaiting trial for allegedly murdering his girlfriend.

I'm marking my calendar for June 4, to check for news of his next scheduled court appearance.

About Autism and "Labeling"

Temple Grandin on DSM-5: "Sounds like diagnosis by committee"

Temple Grandin and Richard Panek, Salon.com - May 18, 2013

Ms. Grandin and her collaborator cover a lot of ground here in a fairly long article on different ways of understanding and classifying "Autism Spectrum Disorders". In places it might be a bit too technical for the average reader. Overall, though, the tone of the article is refreshing and the insights have surprisingly heavy impact.

I say refreshing, really I should say unsentimental. Grandin is a scientist, and though she clearly cares deeply about people who, like her, have autism, she doesn't weep or gush about them. Nor does she attach all sorts of pseudo-spiritual meaning to autism. She sticks with description, and strives for accuracy and perspective, not sympathy or uplift.

Grandin's thoughts on "labeling" are similarly balanced. She doesn't run away from them, and explains their value to science, medicine, and social policy. She also points out ways that properly applied labels for disability conditions like Autism and Asberger's can help everyone understand them. At the same time, she says that it is important to think about what question any given label is supposed to answer. Also, she warns of the social and even economic consequences when labels are changed and rearranged ... including some, excluding others.

This is how I have always viewed labels. They are useful devices, as long as they aren't used as weapons or shorthand. I don't mind someone internally labeling me as a "little person" or whatever, especially if they are meeting me for the first time. A recognizable label can answer distracting questions, like, "What's wrong with him?" The problem comes when you've known me for years, and still think of me in terms of a label. It's that experience of labeling as something that diminishes us that prompts many people with disabilities to see "labeling" as a bad thing. But to me, as Temple Grandin is saying, it's just a thing, and its effects depend on how they are used.

If you want an insightful, humane view of autism ... and a healthy consideration of labeling ... this article is worth your time.