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.