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