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.

What I Meant To Talk About ...

I shouldn't write blog posts when I'm concentrating on other tasks, so please excuse my cliche-ridden, ill-defined question from a few days ago.

I was trying to open a discussion of some of the ways that people with disabilities are stigmatized when they advocate. Advocacy is praiseworthy, but it isn't always pretty. Nobody enjoys having their faults noticed, especially when they haven't noticed them themselves. A common reaction is to resent and try to dismiss the people who do notice, who criticize, who refuse to respect good intentions and instead focus on failing results. There are many ways this dismissal can occur ... and my "loose cannon" and "crying wolf" analogies were an attempt to illustrate two of them. Advocates who show their emotions are "loose cannons". Advocates who are especially active on multiple fronts are labeled complainers, with an added implication that most of their complaints are trivial.

Occasionally, these labels might be valid, but in the long run they are very harmful for everyone, including the people who apply the labels. When a government official, service provider, or business owner dismisses and de-legitimizes an annoying, inconvenient advocate, they gain momentary relief, but cut themselves off further from their community, and delay proper handling of what are often real problems.

With all of this in mind, I'd like to propose and discuss advocacy tips not just for advocates, but also for folks who are on the receiving end of advocacy. I invite readers to think on it, and stay tuned.

Loose Cannons & Boys Who Cry Wolf

I'm extra busy today, so I'll keep this short by simply posing a couple of questions to discuss.

1. What is the difference between an effective advocate and a "loose cannon"?

2. When you meet someone who always seems to be complaining, how do you know when they are really onto something valid, and when they are just "crying wolf"?

News Followup: EEOC Wins Lawsuit On Behalf Of Abused Disabled Workers

Abused disabled Iowa workers awarded $240M

Clark Kauffman, Des Moines Register

Each of the victims received a $7.5 million judgement from the jury, which only too eight hours to make their decision.

Two things I found interesting in this article:

1. The defense claimed that the City of Atalissa, which owned the building and leased it to the company, was responsible for its terrible conditions. I think there's something to that, but that maybe a separate judgment should be made against the City for allowing the situation to continue. It doesn't absolve the company's responsibility. In fact, lots of people are responsible, to some degree, for blissful ignorance, if nothing else. It seems like an example of out of sight, out of mind, plus an assumption that anyone who says they are "taking care of" people with disabilities must be doing God's work.

2. It sounds like the owner of the company, at the very least, had an extremely old-fashioned view of what he was doing, and probably had himself convinced that he was being good to these guys. Again, we see this idea that all you need is good intentions. You don't need to learn anything, you don't need to ever question what you're doing or how you're doing it, and you don't have to submit to outside verification from anyone if you are providing for these poor unfortunates. Doing good may be many things, but it's rarely simple, and good intentions are rarely enough.

On the other hand, maybe he was just greedy, full stop.

The following video accompanies the story:

Pop Culture Review: Tyrion Lannister, "Game Of Thrones"

Tyrion Lannister is a badass ... my favorite character with a disability in current popular culture.

"Game Of Thrones" is the HBO television adaptation of a series of fantasy novels by George R. R. Martin, known collectively as "The Song Of Ice And Fire". It depicts a complex and violent struggle between the great houses of Westeros for the kingdom's Iron Throne, against the backdrop of a slow but gathering threat from the mysterious "Wildlings" of the north.

Essentially, this is a world with the look and feel of medieval Europe, with elements of "Lord Of The Rings" and its many imitators. There are knights in armor, swords, and perhaps some sorcery. There is also a great deal of greed, duplicity, and sex, which tend to overwhelm and overshadow the rather thin veneer of chivalry that normally dominates most fantasy tales. It is more "modern" than most similar stories, in that the nobler elements of the fictional world are more forthrightly shown to be an illusion to cover up the darker side of human nature.

Tyrion Lannister is a "little person", sometimes referred to in the novels and TV show as "The Imp" or "Half-Man". He is one of two sons of Tywin Lannister, head of the Lannister family, one of the contending great houses of Westeros, known mainly for its great wealth and ruthlessness. He is also one of an unusually large cast of major characters, so, what, other than his short stature, makes Tyrion Lannister stand out? For me, it is because the character provides such acute insight into the disability experience.

- On the surface, people treat Tyrion with some respect, and it seems like he's more accepted and integrated into his society that we might expect. Yet, there's a thinness and falsity to most of the bows and "M'Lords" people give him, a limit to how far his acceptance can go. This is especially true with Tyrion's father, Tywin, who might on occasion give Tyrion important duties, but just as often will remind him that in his father's eyes, he's not a real member of the family. Tyrion has a position of prominence, both inherited and earned, but he knows that there's something unreal and conditional about it.

- Tyrion's main attributes are his sense of humor, in contrast to everyone else's deadly seriousness, his sexual appetites, his love of drink, and, increasingly, his knowledge and knack for strategy. The interesting thing about his sexual exploits is that in the context of this fantasy world, he's not depicted as a pervert or predator, as people with disabilities sometimes are in fiction, but as a more or less straightforwardly hard-partying dude. People joke about it, but no differently than they would any other randy young man in Westeros. There's a kind of equality here, but when he actually starts to fall in love, we see Tyrion again slow to accept that love and real attachment can happen for him.

- We don't get to see Tyrion and his brother, Jaimie Lannister … "The Kingslayer" … together very much, but when we do it's striking how equal their relationship is. Unlike their sister, Cersei, who disparages Tyrion at every opportunity, Jaimie and Tyrion genuinely seem like buddies, if that's even possible in this world in which even siblings regularly stab each other in the back … both literally and figuratively. You get the feeling that they might plot against one another, but when push comes to shove, they'd probably step up and die for one another if necessary. This is one of a handful of Tyrion's relationships that so far seem to be genuine, and genuinely equal.

- Tyrion has developed two other "friends" so far who further flesh out how he deals with his disability. One is Bronn, a mercenary or "Sell-Sword" who, on a whim, agrees to champion him in a sword duel, and from then becomes, essentially, his paid servant and bodyguard. The two aren't quite friends, but it feels like they are just a bit more than employer and employee, which I think mirrors the relationship some people with disabilities have for personal care aides.

- The other important person in Tyrion's life is Shae, a prostitute he hires, first for a night, but then keeps on indefinitely as something somewhat more than just a sexual partner. Both Bronn and Shae seem to develop true loyalty and affection for Tyrion, and stick by him on several occasions when ordinary servants and retainers would bolt. Tyrion's reaction to this loyalty is great to watch, as it only slowly dawns on him that it's possible people might befriend him because they truly like and respect him, not just for pay.

 -Tyrion often takes a special interest in others he meets who are also physically disadvantaged, such as Bran, the young son of the Stark house of Winterfell, who early in the series is paralyzed and unable to walk. Tyrion is also one of the few characters in the whole story who seem able to like and respect people ... or not ... regardless of their family, clan, or status.

- The character is played by Peter Dinklage, who is, himself, a little person. He won an Emmy and a Golden Globe award for this role, and he's such a good actor that it's hard to tell how much of his own feelings about disability he brings into his work in "Game Of Thrones".

These are all things that gradually emerge in the character over the course of the series, but even if you miss some of them while following the dozens of other interlocking plots, you can get a lot of wisdom about disability just from Tyron's own words. Here are a few of my favorite Tyrion Lannister quotes … 

Jon Snow: Why do you read so much?

Tyrion Lannister: Look at me and tell me what you see.

Jon: Is this a trick?

Tyrion: What you see is a dwarf. If I had been born a peasant, they might have left me out in the woods to die. Alas, I was born a Lannister of Casterly Rock. Things are expected of me. My father was the Hand of the King for 20 years.

Jon: Until your brother killed that King.

Tyrion: Yes, until my brother killed him. Life is full of these little ironies. My sister married the new King, and my repulsive nephew will be king after him. I must do my part for the honor of my house, wouldn't you agree? But how? Well, my brother has a sword, and I have my mind. And a mind needs books like a sword needs a whetstone. That's why I read so much, Jon Snow.

==========

Jaime Lannister: Well, even if the boy lives, he'll be a cripple, grotesque. Give me a good, clean death any day.

Tyrion: Speaking for the grotesques, I'll have to disagree. Death is so final. Whereas life, ah life is so full of possibilities.

==========

Tyrion: Let me give you some advice bastard. Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.

==========

Maester Luwin (referring to Bran Stark, after Tyrion has given him the design for an adapted saddle): The boy has lost the use of his legs.

Tyrion: What of it. With the right horse and saddle, even a cripple can ride.

Bran: I'm not a cripple.

Tyrion: Then I'm not a dwarf. My father will be rejoiced to hear it.

==========

Tyrion: I have a tender spot in my heart for cripples and bastards and broken things.

==========

Tyrion: If you're going to be a cripple, it's better to be a rich cripple.

Here are some of Tyrion's best scenes in the first two seasons of "Game Of Thrones":