"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.

Disability News

Disability Advocates Speak Out Against Airport Wheelchair Abusers

CBS News New York - May 13, 2013

Of all the problems affecting people with disabilities, non-disabled people pretending to be disabled in order to steal our privileges and accommodations strikes me as more of a moral issue than one of real harm. It seems like a favorite theme for the mainstream press, though, maybe because it's the sort of injustice that anyone can understand. At least this article deals with the fact that it's not so easy to catch cheaters. Wheelchairs in airports aren't just for people who can't walk, and a person who gets up out of a wheelchair to walk the last few yards onto a plane isn't necessarily faker. Imagine the chaos and humiliation if airline employees were empowered to grill everyone who asks for wheelchair assistance about what, exactly, the nature and severity of their disability is. I'd rather let a mildly arthritic lady use a wheelchair she might not, strictly speaking, need than have to carry around a notarized note from my doctor.

Patriots’ decision to cut Love looks like disability discrimination

Mike Florio, NBC Sports - May 16, 2013

This is a great example to help flesh out how the Americans with Disabilities Act applies in inherently physical professions, like professional sports. Diabetes may or may not affect a pro football player's performance, and should be judged on a case by case basis. It's refreshing to see a news article that seems to understand this and ask the right questions, even if doesn't provide answers.

Daily Checkup: Arthritis is the leading cause of disability in U.S., but sufferers no longer have to grin and bear it

Katie Charles, New York Daily News - May 19, 2013

Here is one reason why it's a mistake to judge a person's disability on appearance, or recognize only the most severe conditions. Arthritis can be a very real impairment, but very hard for the average person to assess just by looking. The sheer numbers of people with arthritis, and its connection with age, should also affect how businesses understand their responsibility to make their places accessible.

With Wheelchair and Lively Baton, Levine Commands Carnegie Hall

Anthony Tommasini, New York Times - May 19, 2013

My father was an opera lover. I remember hearing James Levine's name announced on public radio broadcasts of the Metropolitan Opera every weekend in my childhood. I didn't know he had been sidelined by spinal injuries, but it's great to see that he's figured out ways to return to the podium. It would be nice if all workers with disabilities were as well accommodated in their jobs.

This Week In Disability Thinking ...

Monday - Disability News

Tuesday - On "Labeling"

Wednesday - Pop Culture Review: "Through Deaf Eyes"

Thursday - Fun With Numbers

Friday - Photo Of The Week

New EEOC Guidance On "Intellectual Disabilities"

The U.S. Equal Employment Opportunity Commission has issued new guidance for employers on ways to accommodate employees with "intellectual disabilities", a.k.a. "cognitive impairments" or "mental retardation". This is the latest in a series of well-written, informative documents on different kinds of disabilities, focused on practical ideas for helping employees with disabilities function effectively on the job.

I really feel like these documents are underrated. Actually, I can't think of a better source for nuts-and-bolts advice on treating people with disabilities fairly, not just in the workplace but in general. It isn't enough to want to be fair to people with disabilities; in many situations, you have to know how. Instead of rehashing why it's important to accommodate people with disabilities, the EEOC guides provide useful advice on how to do it.

Since intellectual disabilities may be among the least understood and most stigmatized disabilities, I hope this guidance paper is widely read. I'm going to read it now, and I may decide to discuss or nitpick it another time.

Questions & Answers about Persons with Intellectual Disabilities in the Workplace and the Americans with Disabilities Act (ADA)

U.S. Equal Employment Opportunity Commission

Is There A "Code Of The Cripple"?

Beyond The Code Of The Streets

Ta-Nehesi Coates, New York Times, May 4, 2013

I read this article a couple weeks ago. The author describes how habits and behaviors that were functional and even necessary for him growing up in a tough, violent environment are now both inappropriate and potentially destructive in his current, professional, educated, upper middle class life. He's talking about things like always being on the lookout for physical threats, never backing down from confrontations, and being prepared to meet violence with violence, not just in theory, but in imminent reality. They made sense for an African-American kid growing up in "crack era Baltimore", but not for the young writer at a national literary magazine.

Do read Coates' own words ... he's a great writer and I'm sure I've over-simplified.

The article got me thinking, though, about whether there are behaviors and habits people with disabilities learn that serve us well in some situations, but very badly in others. Are there "cripple codes" or practices that make sense for us in, say, institutions or other neighborhoods in "disability world", but are out of place and ineffective in "mainstream" settings?

Maybe its the other way around. Maybe we absorb attitudes and practices that make sense for non-disabled people, but don't help us as people who do have disabilities.

No answers here ... just questions.

Pop Culture Extra: A New "Ironside"!

This week, NBC announced its Fall 2013 TV schedule, and one of its new shows is "Ironside", a remake … or maybe reimagining … of the classic "Ironside" starring Raymond Burr. The new Ironside will be played by Blair Underwood.

The Internet Movie Database says:

"Centers on Robert T. Ironside, a tough, sexy and acerbic police detective relegated to a wheelchair after a shooting who is hardly limited by his disability as he pushes and prods his hand-picked team to solve the most difficult cases."

Here is the trailer for the new "Ironside":

It looks like they are staying with all of the main elements of the original series, while sort of amping up the gruffness and unpredictable brilliance of the original Raymond Burr Ironside. The new Ironside may be a bit more physical, and possibly less cerebral, though he may be both, we'll see. Apparently, he's also "sexy", which I don't think was ever something that would be used to describe Burr's Ironside. He will still have his team of investigators, though I'm curious to see whether, being African-American himself, he will have any equivalent of Mark, the helper guy in the original series. I loved the little musical allusion to the original series theme … that short siren-like electronic passage.

Like all remakes, this could either be a big improvement, or a disaster. I'll be watching!

Pop Culture Review: "I, Claudius"

I, Claudius
BBC, 1976

Claudius - Derek Jacobi
Augustus - Brian Blessed
Livia - Sian Phillips

"I, Claudius" is one of my all-time favorite TV shows, and my absolute favorite with a disabled character.

It is a 12-part TV mini-series produced in 1976 by the BBC, brought to American television by PBS. It is an adaptation of two historical novels written by Robert Graves in the 1930s, about the Roman Empire's first imperial family, the Julio-Claudians, focusing mainly on Claudius. Claudius was a grandson of Emperor Augustus. Historical records suggest that he had either epilepsy, cerebral palsy, or possibly both. He walked with a pronounced limp, stuttered, and may also have been partially deaf.

History doesn't say much about how these disabilities affected his life, but Graves' novels offer a vivid take on what they might have meant. To begin with, the Claudius of "I, Claudius" is something of a laughingstock and irritation to his own family.

Even though "Grandmother" Livia is nasty pretty much to everyone, her insults and eye-rolling attitude towards Claudius are just somewhat extreme versions of what most people around Claudius think of him. He's a "halfwit" who's embarrassing and annoying to have around. This scene also shows how peoples' impatience with Claudius' disabilities make the disabilities more pronounced; the more Livia sighs and calls him an embarrassment, the more Claudius stutters and the clumsier he becomes.

There are a few very enjoyable exceptions to this attitude. Emperor Augustus, Claudius' grandfather, at one point tells Claudius that he's underestimated him. A couple of scholars come to realize how smart Claudius is after meeting him in the library. Herod, the visiting Prince of Judea … (yes, that Herod) … is a true childhood friend and adult supporter to Claudius. And there's my favorite example, Claudius' brother, Germanicus, who never disparages Claudius and speaks to him entirely as an equal:

A major theme of the story is that Claudius' "infirmities" actually save him from most of the intrigues and literal backstabbing that plagues his family. When Emperor Caligula is assassinated, the Preatorian Guard, grab Claudius from where he's hiding, and instead of killing him as they're doing to the rest of the imperial family, laughingly declare him to be the new Emperor. It is implied that they, too, see Claudius as a halfwit … not responsible for Caligula's horrible behaviors … and someone they will be able to control. As both the story and actual history make clear, they made a pretty good choice, but not for the reasons they thought.

In addition to being a key turning point in the larger story, Claudius' exchange with the Senators is an eloquent statement of the contrast between specific impairments and a person's actual worth.

The end of the scene hints at why Claudius isn't exactly a perfect role model for people with disabilities. Although now regarded as one of Rome's "better" Emperors, Claudius did preside over his share of corruption, war, and political murder. Still, he wasn't was a fool, and compared to dozens of Rome's "non-disabled" Emperors, Claudius seems to have been genuinely responsible for major territorial expansions (conquests), civic improvements, and somewhat less corrupt administration. Rome as a whole did well under Claudius' reign, and that can't be said of plenty of Emperors who didn't have disabilities.

Even though "I, Claudius" is a televised version of a fictionalized account of sketchy, 2,000 years ago history, let's just say that Claudius, as portrayed by Derek Jacobi, is one of my favorite disabled role models, and an indication that even in ancient times, disability wasn't always destiny.

I, Claudius

by Robert Graves

Claudius The God

by Robert Graves

Wikipedia entry on Claudius (Tiberius Claudius Drusus Germanicus)

"I, Claudius" is available on DVD, and also appears to be viewable in its entirety on YouTube.

This Disney Thing ...

Report: Wealthy hire disabled guides to skip lines at Disney World

Josh Levs, CNN - May 15, 2013

I've been seeing headlines about this for the last couple of days, and my main reaction has been a rather vague sense of "Oh, crap!" People are outraged, but in a weirdly unfocused way. What, exactly, is the problem here, rich people buying privileged treatment at Disney World, or misusing a kind accommodation meant for people with disabilities? Are we angry at the tour guide business that runs the scam, or at the disabled individuals who actually carry it out? Are these disabled guides amoral scammers making easy money, or victims of shameful exploitation?

Hiring yourself out to facilitate Disney tours for families actually sounds like a great job and a perfectly legitimate business idea. I'm sure there are lots of ways someone knowledgeable about Disney theme parks can make a visit smoother and more pleasant, doing anything unethical. And obviously, it's the wealthier families that are going to pay for a service like this. To me the problem is twofold ... It does abuse the intent of practices that are meant to accommodate actual visitors with disabilities, which erodes the benefit for people who can really use it. And I do get an ugly vibe of arrogant privilege from the whole thing. It seems like some of the clients think it's not just convenient, but high-status and cool to pull this little scam, with no apparent sense of guilt or ambivalence.

I wonder if the wheelchair using guides are real guides, or if they just tag along with families in order to fulfill the line-jumping function. A real guide in a wheelchair could provide a really positive experience ... spending a day with a wheelchair user who's organized, enthusiastic, energetic, and knowledgeable could give kids, especially, a more positive view of people with disabilities. But if their only function is to be a line-jumper, the effect would be quite the opposite, to the point of being dehumanizing.

It sounds like something that might have started out good ... a sound business model with a willing customer base, and an interesting employment opportunity ... but turned bad when everyone involved either chose to ignore a major ethical lapse, or was too dense to perceive it.

Services, Or Just Money?

There's an underdog economic theory gaining a bit of minor-league momentum, which proposes that instead of addressing poverty through a confusion of federal and state programs with varied eligibility criteria, we should instead have the federal government give every citizen a base annual income.

In other words, instead of trying to create, improve, monitor and manage effective programs, just give people money.

The most far-reaching version of this is the Basic Income model, where every citizen gets, let's say, $10,000 per year no matter what … regardless of age, condition, employment status, or income earned through work or other sources. That would mean a couple with one child would start their year with $30,000 to work with, and then perhaps work, save, and invest to increase their income beyond that. An individual living alone would have $10,000 to start. A couple with 5 kids would have $70,000.

The exact annual amount doesn't matter as much as the basic idea. Before you decide it's either too generous, keep in mind that the political and financial tradeoff would be elimination of virtually all programs and services that currently help low-income people. Depending on who you talk to, it might even trade a somewhat higher Basic Income figure with elimination of all government funded health care or insurance. Or, we could designate certain services that are better provided in-kind rather than purchased on the open market, but the spirit of the idea really is to give people money, and let them decide how to use it to meet their needs or solve their problems.

Before you reject this as totally impractical, think about it. For a moment, leave aside the ideological issues of having the government passing out unearned cash to everyone, and think about the reduced administrative costs. No more overlapping bureaucracies, no more eligibility determinations, much simpler fraud monitoring, and the whole thing would be far less labor-intensive. All you have to do is cut checks and send them to people. From a conservative and libertarian standpoint, some form of Universal Basic Income makes sense. It might be the most financially efficient way to help the most people, while imposing the least amount of government intrusion on their lives. After all, we'd be saying to everyone, "We'll give you some money. What you do with it is entirely your decision."

I kind of half alluded to this idea in a previous blog post, in which I discussed the fact that money is especially empowering for people with disabilities, because it can be used to obtain virtually any tool or service we need to enhance our independence. Specific services or items can only do what they do, and if they aren't a good fit for our particular needs, it's hard or impossible for us to trade their value for something more effective. What most of us need more than anything else … more than services, more than counseling, more than ramps, more than assistive technologies, more supervision or education … is more money. With money, we can buy any of those things we need to cope with our disabilities and make our lives better.

Maybe we could test out this Universal Basic Income idea on people with disabilities. Just decide on a single, functionally-based definition of disability, set an annual dollar amount, and give us a check for that amount every January 1. Or, maybe we could set up a few broad categories of disability and set a different dollar amount for each one, based on a reasonable estimate of the costs of coping with each kind of disability. Either way, that money would be ours to use as we saw fit, and the only thing to make us spend it wisely would be knowing that it is all we'd get until the next year. If we wanted a nicer place to live, a fancier wheelchair, a cool vacation, more eating out, and the like, then we'd pursue employment, to build our wealth beyond that basic level. And because the annual check would be based only on the disability, earning money through work, investment, or other sources wouldn't reduce the basic benefit one cent. The "disincentive" to working would be completely gone.

What do you think? Worth a try?

Costs too much? How about we agree that overall, we'll just use the money we already spend on disability-related benefits and programs. Dissolve them all, throw the money in a common pot, and give everyone an equal and sustainable share. There would be no need to raise additional revenues, unless at some pointe we wanted to in order to make the benefit more generous.

Think we'd misspend the money? Maybe some of us would, but then with no additional safety net … this would BE our safety net … there are certainly incentives for us to use the money wisely. Also, plenty of models already exist  that provide for minimal, informal guidance of personal budgets for people with more significant cognitive disabilities. For the rest of us, well, give us some credit. We can take care of ourselves pretty well if we have the resources.

That's the point of this whole idea.

Here are a few recent articles on aspects of the Universal Basic Income concept:

Thinking Utopian: How about a universal basic income?

Mike Konczal, Wonkblog, Washington Post - May 11, 2013

Just Give People Money

Karl Smith, Forbes Magazine - May 13, 2013

There's A Way To Give Everyone In America An Income That Conservatives And Liberals Can Both Love

Joe Weisenthal, Business Insider - May 13, 2013

Disability News

Disabled Couple Seek Life Together in Group Home
Frank Eltman, Associated Press - May 7, 2013

Is this one of those stories of injustice that are as outrageous as they seem, or are there circumstances underneath that we don't know about? My guess is that it's a little of both. The agency involved may be dealing with some real dilemmas. For instance, how would the other residents of the group home react when the couple starts sleeping together? On the other hand, a problem like that is only a problem if you severely underestimate the common sense of people with cognitive impairments. Marriage isn't some mysterious thing in our society … even small children have a basic idea of what it is. It might even be a good opportunity to help other residents better understand marriage and sexual relationships.

The fact is that there's little legal debate about cognitively impaired people marrying, and there are plenty of developmental disability service providers that have no problem with it, either. This one just seems to be behind in its thinking. It's also possible that one or two key staff have some kind of hangup about it and are exercising undo influence in this situation.

One other entirely subjective thought … They seem like a massively cute couple, and I really hope they win this dispute. Better yet, why bother with the group home. Help them get an apartment and give them support services there.

Storm Plans for Disabled Are Inadequate, U.S. Says

Benjamin Weiser, New York Times - May 10, 2013

This was a big issue in the disability community for about ten minutes after 9/11, then after Katrina. It seems like one of those things where perfection is impossible, but should be pursued in order to bring about badly needed improvement. Also, the stakes are higher. If a restaurant isn't accessible, it's annoying. If a shelter is inaccessible, it can be fatal.

Missouri lawmakers seek sure funding for disabled children’s program

Associated Press - May 13, 2013

I think this is the first time I've seen a disability funding situation where one disability sub-group is pitted against another. It looks like the Missouri Legislature may find a way to avoid it, but seeing it set up at all really scares me. I see a real danger that in coming years, retirees and younger disabled people may fall to fighting over Social Security and health care resources in what would be the ultimate death match of the downtrodden.

Note: This weekly feature isn't anything like a "complete" listing or even a summary of all disability-related news. It's just articles I choose for whatever reason. My comments on each article are my own opinion, but I will try to ask as many questions as I claim to answer.

This Week In Disability Thinking ...

Monday - Disability News

Tuesday - Services, Or Just Money?

Wednesday - Pop Culture Review: "I, Claudius"

Thursday - Is There A "Code Of The Cripple"?

Friday - Photo Of The Week

Forrest Gump, Meet Tommy Westphall

Rather than completely re-writing my "Forrest Gump" post from Wednesday, I'll just try to explain the idea I was trying to express.

First of all, it helps to be familiar with the Tommy Westphall Universe Hypothesis. Tommy Westphall was a very minor character in the 1980s TV show "St. Elsewhere". Tommy was the son of Dr. Westphall, the Chief Physician at St. Elegius, the fictional Chicago hospital that is the setting for the series. I'm not sure if Tommy even appeared until the series finale, but on the show it was always known as a background fact that Tommy had Autism. At the end of the series finale, it is revealed that all of the people and events of the entire series had taken place within Tommy's imagination. In a nice added touch, Tommy's father, we'd have to call him Mr. Westphall I guess, is shown to be a janitor.

From this ultimate plot twist, enthusiastic pop culture nerds have developed the idea further. Noting that occasionally, "St. Elsewhere" characters had done "crossover" episodes on other NBC shows … presumably as a gimmick to boost viewership … and noting further that those shows had shared character crossovers with still others … then it stands to reason that Tommy Westphall's internal "universe" actually encompasses a large percentage of fictional television.

It's all fun and a bit silly. Still, I think that something like this may be at work in our understanding of "Forrest Gump." I'm not suggesting that the entire story is made up in Forrest's mind. I'm saying that it's possible to accept the broad outlines of the story, while considering the possibility that Forrest's enormous, almost supernatural good luck is in part a function of how Forrest understands his own experience.

In the movie, Forrest is understood to be mildly cognitively impaired … or "mentally retarded" in the old terminology. His mind clearly isn't altered enough for him to have dreamed up the whole story like Tommy Wesphall, but maybe enough to bend and warp the nature of his own role and place in the events of his life. In the places where we say to ourselves, "How could that really happen?", maybe the answer is, "Maybe it didn't happen exactly like that", or, "We don't know how it happened because Forrest really doesn't, and we're seeing all of this as Forrest does."

That's what I meant when I said that "Forrest Gump" can be viewed in part as a simulation of what it's like to be Forrest. We don't just see what happens to him, we see things as he sees them, filtered and perhaps changed though his unique mind. It helps explain the movie's extraordinary strokes of luck and improbable coincidence, as Tommy Westphall's savant imagination sheds light on why events and characters on "St. Elsewhere" had become gradually, subtly stranger as it progressed. But while the Tommy Westphall phenomenon was an explicit and intentional plot point, this "Forrest Gump Hypothesis" is just speculation, and probably wasn't an intentional thing.

Intentional or not, I wonder if the simulation of cognitive impairment we seem to get in "Forrest Gump" is realistic. I also wonder whether there are other movies or TV shows that don't just depict people with cognitive impairments, but try to put is in their shoes ... and in their minds?

Photo Of The Week

This jar opener is one of the most useful things I own … probably the most valuable in terms of usefulness per dollar spent to buy it. It's amazing how powerless it can feel when you live on your own and your hands aren't strong enough to open a simple jar.

"I'm not one of them!"

Thinking about "Forrest Gump" has led me down an interesting path.

Until about 20 years ago, if someone had asked me what element of disability prejudice bothered me the most, I would have said, "When people assume I'm mentally retarded."* For several reasons, that isn't even on my grievance list today.

I suppose one reason is that it has been a long time since I felt like someone actually thought I had a "cognitive impairment". I'm older, I hope more mature, knowledgeable, and at ease in my own skin, and therefore maybe less likely to come across as "different" ways that might be explained by an "intellectual disability". Maybe people still do mistake me for someone with "something wrong in my head", and I've just become oblivious to it. Maybe I was overly sensitive to the possibility when I was younger. People might even be less ignorant than they used to be. Maybe all of our messaging to the effect that, "Just because my legs are impaired, doesn't mean my mind is" has gotten through to a critical mass of people, and it's just not a common prejudice anymore. I'm not sure.

The other reason why I think differently about this now is that soon after starting to work in the disability field, at an Independent Living Center, I had a slow-motion epiphany about the relationship between people with "physical" disabilities and those with "mental" or "cognitive" disabilities. It went something like this:

1. It's understandable to be frustrated when someone assumes you have a disability you do not. I have enough trouble with my actual disabilities, without also having to contend with the prejudices of someone else's kind of impairment. Also, I happen to value and take some pride in my intelligence, such as it is. So, it's okay to be upset when someone mistakes me for "retarded".

However …

When this made me upset, and especially when I hotly denied the designation, I was buying into the stigma against people who actually do have "learning difficulties". What if I had been "developmentally disabled"? Would that mean that people's condescension was correct in some way? The problem isn't the label, it's what people do with it. Believe me, nobody ever treated me better or more respectfully because they temporarily thought I might be "developmentally delayed".

Not only was this "buying into" the stigma, it was supporting and validating it. Which was never my intention, even back then. Good intentions only get you so far, though. At some point you have to become aware of the effects of your actions and feelings, not just your intent, and act according to your actual beliefs.

By that time, I had come to believe that in most important ways, people with physical impairments and people with cognitive impairments are more alike than they are different. At the very least, people with "physical" disabilitieis and people with "mental" disabilities share many common experiences. For instance:

- We are underestimated. We often underestimate ourselves.

- We have to work harder and more deliberately to assert our personhood, our agency, our membership in a society that can't seem to help marginalizing us, even when they're being "nice" to us.

- We have to do things differently than other people, due real and specific impairments we can't wish away or pretend aren't there.

- We often see people react to our very presence with surprise, discomfort, morbid curiosity, or an impulse to flee. Even if it's just for a second, we notice it, and there's probably nothing we can do about it.

- Statistically, we exist in a world of poverty, massively high unemployment, poor education, and low percentages in almost any measure of a happy life you can think of.

There are exceptions to all of these trends, and each one of us has bright spots that for others of us are dark. But, I don't think there is a single one of us … physically or cognitively impaired … who doesn't experience at least one of these things on a regular basis.

So, yeah, it does bother me personally when people say "retarded" (it bothers me a little even to type it here), and I don't worry anymore whether or not people think I'm that kind of disabled. It's not because I've tried hard to be "politically correct" or more enlightened. It's more than an intellectual change. It's because I simply see the whole issue differently now than I used to.

* I am using a variety of terms and phrases to describe disabilities involving brain function, because the confusing mess of terminology for this kind of disability reflects how conflicted we are about it ... more so than with other disabilities.

Re-Write Coming on "Forrest Gump" Review

I like the idea I was trying to express in yesterday's Pop Culture Review of "Forrest Gump", but I don't like the way I wrote about it. I will post a re-write sometime in the next day or so.

Pop Culture Review: "Forrest Gump"

"Forrest Gump" is told from Forrest Gump's point of view.

On one level, that's obvious. Over half of the story consists of Forrest telling some friendly strangers his life story, while he sits on a park bench in front of the White House. We are led through the whole story by Forrest's own words in voiceover. "Forrest Gump", the movie, is Forrest Gump, the character, telling his own story. We don't see through Forrest's eyes, but despite the vast historical sweep of the movie, this is always, firmly, Forrest's story.

What makes this a remarkable disability film, however, isn't the fact that it is a story of a man with cognitive impairment. Tom Hanks' delivery is convincing, but not exactly groundbreaking, and while the story is certainly uplifting, it's not very realistic. This isn't a life anything like the life of most real people like Forrest. Yet, we feel like we've learned something about this kind of disability after seeing "Forrest Gump". I never could figure out why, until just recently.

I don't know if this is an original thought or if others have suggested it, but I think "Forrest Gump" is a kind of simulation of how a mildly cognitively impaired person … otherwise known as "mentally retarded" … views and understands his life and times. Technically, we are omniscient observers, outside the story and privy to everything that's going on, just as it is. But really, we see and think about everything as Forrest does, slightly distorted, a bit truncated, in something more than two dimensions, but a bit less than three.

The events are outwardly realistic, yet fantastical. There aren't any magical creatures, and nothing supernatural happens. This is clearly the real world we're in. But, all of those historical coincidences, the moments when Forrest just happens to find himself at the center of big events, seem like Forrest's own distortions. I'm not saying he's making them up. It's just that he remembers historical events entirely in terms of his own history, and the events seem to lack depth or meaning beyond Forrest being there.

Supporting characters like Bubba, Lt. Dan, and Jenny are important, too, but they drift in and out of the story and, except maybe for Jenny, they have remarkably little effect on Forest as a person. When Forrest comments on supposedly big emotional events by saying, "And that's all I've got to say about that", one way to interpret it is that he's so moved that he's at a loss for words. I think it's just as likely that he is moved, but in a somewhat flatter way than usual when filtered through his way of thinking. It's not that he lacks emotions or empathy, but there is a difference to how he processes things, and we get to feel it a bit through him.

Likewise, the ideas and insights Forrest expresses are true and wise, but simplified, expressed in little epigrams that sound meaningful, but are actually kind of hollow when you dig a little. "Life is like a box of chocolates; you never know what you're going to get", has this sort of Zen quality … like "Wherever you go, there you are!" Actually, though, it's just something his mother said to him when she couldn't think of anything else to say, now Forrest says it and it's enough for him to explain pretty much anything that happens to him.

A more dramatic and deliberate example of this can be found in "Being There", the film starring Peter Sellars about a "simple man", Chauncey Gardner, who drifts through life in a pleasant haze, repeating little phrases he's heard, while the people around him over-analyze him for their own purposes. When he describes the step by step process he follows for planting and tending a garden, great minds assume its a metaphor for leadership and economic strategy. Really, he's just talking about gardening. "Forrest Gump" doesn't go this far, and I don't actually think the writers or actors intended the film to give the kind of "through the mind of Forrest" insight I'm suggesting. It just came out that way.

Like Forrest himself, I don't even think there's a profound message or revelation here. It's an experience … textured, emotional, very human … but no more than that. While "Forrest Gump" on the surface has little new to say explicitly about people with cognitive impairments, I think it gives us a feel for that experience that's unique and personal in popular culture.

New Comments Feature

I have switched the comments feature to an application called Disqus. At the bottom of each blog post, you will find a link that reads "Click here to add a comment". You can comment as a guest, or create a free Disqus account of your own. Either way, I will still review comments before publishing, so you won't see your comments immediately, but I think this new application will make it a little bit easier to add your two cents to the discussion.

Accessibility Downtown

I'm the sort of person who would like to support downtown businesses, but I don't. Why? Because locally-owned restaurants and shops downtown are not as accessible as the soulless chain restaurants and box stores outside the city.

I don't even use a wheelchair, and still my relatively minor difficulties walking cause me to avoid charming little stores with their charming little steps, narrow doorways, and other architecturally interesting, functionally uncomfortable features. I like driving up to a nice wide parking space in a dedicated lot, and walking a few steps to a ground-level door that's easy to open. For non-disabled shoppers, the difference is trivial, but for me, doing business downtown is at least twice as exhausting as doing business at a strip mall. There are exceptions. A few downtown places have been properly and creatively remodeled to be more accessible, and you can still find buildings put up yesterday that somehow still have pointless, unnecessary barriers. But, the pattern is pretty clear. For people with disabilities, good old-fashioned business districts are a pain in the ass at best; for many, they are complete no-go zones.

It's easy to think of reasons why this problem persists … the difficulty and expense of renovating old buildings, lack of available space for ramps, hilly areas that just can't be made flat, ignorance or apathy of business owners, poorly enforced accessibility standards, simple procrastination … but the ease with which we pin blame fools us into thinking we know exactly what the problem is, and I don't think we do. I'm sure the answer varies from place to place, and involves all of the above reasons and maybe others, but what are the most significant reasons why downtowns seem to have missed the accessibility trend? More importantly, which reasons are amenable to change? Is education the answer? Legislation? Lawsuits? Or, is there a technical fix or technique that could work wonders? Should we work on business owners? Their customers? What can city and town governments do? And just how much of an impact would better accessibility have on the businesses themselves. It makes sense to say it would help them, but how much? Do accessibility improvements really pay for themselves? Does it matter?

The talking points and statistics most often quoted on this subject seem to be the same ones I heard back when the Americans with Disabilities Act passed 23 years ago. I'd like to see a really rigorous study and analysis done by a disinterested third party … not by a Chamber of Commerce, and not even by a disability advocacy group … to produce up-to-date data on the relationship between retail business success, downtown revitalization, and accessibility.

There are also ideological barriers to deal with. Business people tend to resent and resist anything like regulations, even if compliance would be beneficial to them. Local governments tend to cater to businesses, because they are the economic engines of their communities. Disability advocates may downplay the cost and difficulty to businesses of accessibility, especially in downtown areas which tend to house businesses with less capital, business expertise, and time for long-term strategic improvement. Disability rights laws, themselves, assume that the expense for accessibility should be borne by businesses. Neither government nor non-profit agencies are anxious to fund accessibility improvements directly ... apart from some rather feeble tax credits. A few years ago, did anyone seriously consider using economic stimulus funds to help businesses become more accessible?

Meanwhile, I'm going to try to do my part by entering my own accessibility observations into the online reference AbleRoad. It's a great online tool to find accessible businesses, but it's only as good as the information we add.

Disability News

Advocates Say Managed-Care Plans Shun the Most Disabled Medicaid Users

Nina Bernstein, New York Times - April 30, 2013

Wisconsin told to boost oversight of voucher schools' disability rolls

Erin Richards, Milwaukee Journal Sentinel - May 2, 2013

These two articles illustrate one of the less understood and recognized ways people with disabilities are subjected to organized discrimination. In both cases, you have for-profit organizations that benefit financially from providing the least possible service, because they are paid a flat per-person fee for their service, regardless of how much they provide. In one case, it's managed care health insurance plans, in the other it's private schools paid by government vouchers. Both are being expected to produce better results for less money. When their customers are easy to serve, everything's golden. But people with disabilities … whether students in school or patients of any age … are by definition more difficult to serve. Maybe not difficult, but certainly more labor-intensive. The fewer of us these programs have to serve, the better they like it, and the better they look … as long as nobody looks very closely to see who they've left out.

Are Doctors Diagnosing Too Many Kids With ADHD?

Scott O. Lilienfield and Hal Arkowitz, Scientific American - May 1, 2013

ADHD is one of those conditions that have become so weighted with ideology that it's hard to even begin discussing it in practical terms. People who dislike medications in general or distrust pharmaceutical companies suggest that ADHD is an industry put-on. People who care a great deal about creativity and individuality suspects it's an excuse for authorities to drug kids into bland obedience. This article provides an overview of evidence for and against the widely-held notion that Attention Deficit Hyperactivity Disorder is over-diagnosed, and reminds us that whatever the extent or scope of ADHD, it is almost certainly a real disability for those who do have it.

Three-Part Series On The Backlog Of Disability Claims At The Veteran's Administration

Kayla Williams, Time Magazine

Here is the series of blog posts at Time.com on the VA backlog, that I referred to some time ago.

• What's Up at the VA? - April 22, 2013
• The VA Disability-Claims Backlog…and the VA’s Response - April 23, 2013
• What Can We Do To Help? - April 24, 2013

These articles are another great example, I think, of an effort to bring clarity and some semblance of objectivity to a highly politicized and frustrating issue.

This Week In Disability Thinking ...

Monday - Disability News

Tuesday - Accessibility Downtown

Wednesday - Pop Culture Review: "Forrest Gump"

Thursday - "I'm not one of them!"

Friday - Photo Of The Week

Recommended: Smart Ass Cripple

The Latest Research on Crippled Bees

Smart Ass Cripple, May 3, 2013

Now that's how to stretch an analogy without breaking it.