Remembering The Pakleds

I was listening to Mission Log: A Roddenberry Star Trek Podcast this morning, and they mentioned a point early in the development of Star Trek: The Next Generation, when Gene Roddenberry asked his team to make a list of ways they could have a character with a disability. The writer David Gerrold, who was the guest on the podcast telling about this, said one of the ideas was to create a character with Down Syndrome who would have a "brain augmentation" of some kind. Of course, in the end they opted for a blind character, Engineer Geordi LaForge, played by LaVar Burton, with his iconic "VISOR" device.

I was surprised Gerrold didn't mention the Pakleds. This was a humanoid species introduced in an episode of TNG that I vaguely remembered, called "Samaritan Snare". The Pakleds were was obviously supposed to be an entire humanoid species that was cognitively impaired. In a moment of deep nerdery, I looked up the Pakleds and that episode on the Memory Alpha Star Trek wiki, and found evidence of a possible disability depiction train-wreck. Before I get into it, though, I'm going to watch the episode, so I can comment on it directly, and see if it's as terrible as the write-ups suggest it is.

Mixed Feelings On Another Issue ...

Judge halts Georgia execution over injection issue

David Beasley, Reuters - July 15, 2013

Can I just say that I hate everything about this? Not about the stay ... I'm glad about that ... but about the whole question of executing people who are cognitively impaired.

Much as I have mixed feelings about people with disabilities running for high office who I disagree with about everything, the issue of executing people with cognitive impairments confuses the hell out of me. I oppose the death penalty entirely, but the pedantic hemisphere of my brain can't stop quibbling about the arguments that have to be put forward in order for laws to say that it is okay for people with "normal" intelligence, but unconstitutional for people who are "mentally retarded". I understand and sort of buy the idea that comprehending the crime and the punishment is the key here, but I still think it is hair-splitting, and in many cases may not even affect reality. It may be harder to understanding things if you have an IQ below 70, but surely it isn't a bright line divide. If a person really can't understand basic moral concepts about killing and beating people, or about punishment of misdeeds, then what does that say about his or her ability to make other decisions, or about his or her agency ... or of other people with cognitive impairments?

On the other hand, this may be a rare kind of case where the law actually does reflect an instinctive moral revulsion. For a sample of that I recommend the Lars Von Trier film Dancer In The Dark. Fair warning though, it is deeply weird and very upsetting.

The Texas Candidate

AG Abbott formally kicks off gubernatorial bid

Houston Chronicle - July 14, 2013

A wheelchair user is running for Governor of Texas.

It's a good test for my disability solidarity. I despise his political philosophy, so I hope he doesn't win, but whatever the outcome, it will be interesting to see how Abbott's disability factors into his campaigning, his opponent's strategy, and the public's reaction. Apparently, he's favored to win, which I guess must say something good about changing attitudes towards disabilities.

It sounds like he cited his injury and disability in a pretty standard, non-controversial way … a turning point in his life, challenges overcome … but I wonder if he'll go further than that. I actually kind of liked his bit about being a politician with a "spine of steel". I wonder if he has more developed than usual positions on disability issues. Would he be more progressive on those matters, or stick with across-the-board conservatism? Will anyone ask him?

It could be fun to watch.

I Love A Parade

Disability Pride Parade to step off in Chicago

Karen Meyer, ABC Local - July 14, 2013

I'm pretty sure this is the first time I have heard of anything like a "Disability Pride Parade", or thought of it as an idea. I can't believe it isn't a more common thing. I'm not big on flashy protests. I'm not against them, it's more of personal dislike. But I could get behind something like this once a year. Sure, it's kind of copycatting the LGBT Pride tradition, but a disability version, done right, could be unique enough to become a strong tradition of its own, with a distinctive message.

The Zimmerman Verdict and Ableism

I realize that claiming a similarity between people with disabilities and Trayvon Martin is potentially volatile and risks overstatement. This is an analogy that I'm still working through, so please bear with me.

One thing the Zimmerman verdict suggests is that young, male African-Americans have a very narrow range of acceptable responses to obnoxious, possibly threatening behavior. If you don't react exactly correctly … if, for instance, you lose your temper and maybe get a little punchy yourself … then it's okay for the other person to kill you. You either show infinite patience and behave absolutely perfectly, or you're toast. I'm no legal expert, but it seems like Trayvon Martin made the "mistake" of confronting the man he probably thought was stalking him or trying to intimidate him. He paid for this rather mild and understandable departure from purely rational behavior with his life.

It's the same for people with disabilities, though not the being killed part. When people with disabilities encounter obnoxious behavior or discrimination from just about anyone, the acceptable reaction is to remain passive, make a joke of it, reassure everyone that "it's okay", or just ignore it. Any other response is met with shock, claims of hurt feelings, and a quickly growing reputation for bitterness and "inappropriateness". When this happens in the context of dealing with any kind of officialdom … human service agencies, housing programs, doctors, teachers, counselors, and government officials … the consequences are worse. We are quickly labeled as either belligerent, mean, noncompliant, or "borderline personality". The exact terms depend on the field involved, but the result is a kind of black-balling that can have massive social and economic effects. We aren't shot like Trayvon Martin, but good luck the next time we try to get a problem resolved, obtain help in a pinch, or even get proper medical attention.

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Postscript: Ta-Nehisi Coates posted a very good summary of his take on the Zimmerman verdict.

Not So Secret?

The Myth of FDR’s Secret Disability

Matthew Pressman, Time.com - July 12, 2013

A guest writer at Time.com offers an interesting take on whether and how President Franklin Roosevelt's disability was concealed. The writer confirms that there was concealment, but suggests that the idea of a "gentlemen's agreement" among the press to not photograph or mention FDR's disability grew out of our present-day cynicism about today's "gotcha" journalism. We like to think that in the "good old days", reporters had restraint and respect that they lack today, but in reality, they were plenty ambitious and cynical then, too.

I would go a step further and say that maybe we also underestimate the sophistication of ordinary Americans in that time, and assume most people didn't know about the President's disability. Like I said earlier this week, I just have a gut feeling that most people knew on some level that Roosevelt's polio wasn't completely "beaten". Multi-layered thinking wasn't invented in the 60s. People in the 30s and 40s might have had access to less information overall, but they weren't stupid or simplistic, at least no more so than today. I think it's perfectly possible that a nation desperate for leadership in the Great Depression would choose to overlook something like physical impairment in someone they otherwise felt was "the man of the hour." Overlooking doesn't mean not knowing.

I wonder if in some ways, attitudes towards some disabilities might have been healthier than they are today.

More Lego!

This went up on YouTube many months before AmputeeOT's "Lego Leg" video. It has a lot of views, but according to the stats history, there was no spike at all in connection with the Lego Leg video. I would think it would be a natural related video suggestion.

The chair itself is pretty cool, and looks to be about as practical as the Lego prosthetic.

One thing about disability awareness gimmicks is that it is very hard to predict how people will process them. People seem just as likely to come away with a message of pity or sympathy as they are to see capability and empowerment. You can see that in the mix of comments on AmputeeOT's videos. I wonder what long-term effect these Lego videos will have on people's perceptions about disability and adaptive equipment.

In Which I Succumb To Godwin's Law

I'm reading "Winter Of The World: Book Two of the Century Trilogy" by Ken Follett. The Century Trilogy is a series of historical novels that follow the intertwined lives of about a dozen characters as they go through the major historical events of the century. The second book covers the Great Depression and the Second World War.

At the moment, I'm in the middle of a section of the novel that dealing with Aktion T4, the Nazi program of deliberately killing people with disabilities. I knew the main details of this aspect of the Holocaust, but it's interesting to see characters I've come to know through other depicted events suddenly dealing with disability … disability as a social and political matter, not just medical. The main thing I'm curious about is whether the author will suggest that Aktion T4 was a rare "misstep" for the Nazis, in terms of domestic politics. I have read some accounts suggesting that the Nazis actually had to back off their "euthanasia" policy, or at least make it more secret, because they angered too many "good" Germans … including parents who might have previously been Nazi supporters. So far, the novel has hinted at this … focusing particular attention on a Catholic priest who has started making waves about the issue. This also highlights the extent to which many of the mainstream, "respectable" Christian denominations either supported the Nazis or cut some kind of informal deal with them in order to avoid stronger persecution.

So far, the novel hasn't fleshed out any of the theories or justifications that underpinned Aktion T4, just a brief reference to the high cost of care. My understanding is that there were a variety of "ideas" behind the "program".

I admit that I can't help thinking about this when I hear debates over "assisted suicide" and the "right to die". I agree that today, these issues are mostly about personal choice, not governent-sponsored extermination. On the other hand, I've heard plenty of arguments over this evolve towards issues of cost, to families and to society, so I don't think the comparison is too radical. Godwin's Law states that the longer an online debate goes on, the more likely it is for someone to resort to a Nazi Germany analogy. Nazi analogies are too common and easy to draw, but occasionally, they actually are valid.

Judging Disability Onscreen

Superfest Disability Film Festival Presents "The Dissies"

Paul K. Longmore Institute on Disability at San Francisco State University

Why The Dissies?

Catherine Kudlik, Disability Remix Blog - July 9, 2013

This sounds like a blast, and I haven't visited San Francisco for years … Maybe after I finish this post I'll just check Expedia.com, just in case there are cheap fares to be had.

How do I judge disability movies and TV shows? I've been thinking about this, and here are the criteria I think I use:

Politics - Does it support or undermine an agreed-upon set of social or political goals for disability rights and social equality?

Offensiveness - Does it trigger a gut-level, involuntary feeling of personal offense and disgust in us as people with disabilities?

Realism - Do the disabled characters look, sound, and behave like people with disabilities do in real life?

Fresh or Cliché - Do characters and plots feel unique, personal, and three-dimensional, or cliché, generic, and flat?

Human or Objectified - Are we brought closer to disabled characters or distanced from them? Are they people, with feelings, motivations, and free will, or just objects to which things are done?

I listed these criteria from least important to most important, though I do use all of them. To this list, I would add another two other principles that aren't specific to disability portrayals only

The first is "Show, don't tell." That means morals and lessons shouldn't be stated like an essay, but demonstrated by what happens in the story. I don't want to hear people make speeches in the middle of conversations. If they have to explain something to me, in the audience, they should do it as naturally as possible to other characters on the screen. I'm willing to sacrifice a lot to "Show, don't tell." I'd rather miss "the moral of the story" entirely than sit through a stilted, clunky, "Afterschool Special" of a story.

The second general principle is to take into consideration "What's the film / TV show trying to do?" In practice that means a negative or even horrific depiction of disability might be "good", if the character feels real, or if the scenes serve a "good" purpose. We might weep and feel emotionally devastated by a movie that shows a disabled character dying from abuse or neglect, but if the character is three-dimensional and human, and if the story teaches us something about a real and important issue, then we might consider it a "good" portrayal. The flip side of this example might be if we never get to know the disabled character much, and his or her death functions mainly as the trigger for someone else's emotional breakdown or revenge-fuled rampage.

How Much Would It Take?

Labour calls for radical reform of social security for disabled people

Randeep Ramesh, The Guardian, UK - July 9, 2013

Awhile back, I was reading a small flurry of articles on big changes in the Great Britain's disability service programs. It was hard to figure to figure out what was going on, but it seemed like the UK system in general was simpler, based more on cash support than services, and possibly more flexible. The problem seemed to be that the Conservative / Liberal Democratic coalition government wanted to make the system a bit simpler still, but also reduce its expense, thereby cutting overall support individuals receive.

Now it looks like the opposition Labour Party has it's own proposal, and it seems to more clearly address simplicity, while reducing one what sounds like the system's most annoying aspect … people with disabilities needing to prove their impairments again and again to different departments. The Labour proposal would apparently consolidate all support into "lump sum" payments, out of which each individual would pay for whatever services they needed … personal care, rent, food, adaptive equipment, counseling, training, whatever.

That sounds good to me, as long as the individual budgets are the right amounts, and based on individual needs, not a cookie cutter formula.

If you have a disability, how big of a support check per month would it take for you to be able to buy the disability-related support and assistance you need?

Who Knew? I Really Want To Know

Ray Begovich, Indiana Professor, Finds Film Of FDR's Secret Disability 

Charles Wilson, Associated Press / Huffington Post - July 9, 2013

The article mentions the President being "pushed" in his wheelchair, but it looks to me like he's wheeling himself; in the video, I think I can see his arms and elbows swinging back and forth.

Everything you read about it says that the President kept his disability a secret, but that just doesn't sound possible. My parents grew up in the 1930s, and my Mother, at least, always told me that people knew FDR used a wheelchair. It wasn't a secret, it just wasn't discussed. I wonder if that's really how it was. I really need to read "FDR's Splendid Deception", which I believe is the definitive book on the subject.

If Roosevelt's disability was a taboo topic but widely known, that would suggest that people had much more complex ideas about disability than people today give them credit for. Roosevelt was already famous when he got polio as a younger man, so people knew he'd had it. People certainly knew a lot about polio in general … a lot more than people know these days. So, wouldn't they have assumed that Roosevelt had to have at least some residual impairments? Maybe they didn't know the details. Maybe they didn't know he was fully paralyzed. They had to know something, and I suspect there was kind of an unspoken deal between the people and their President … an agreement not to acknowledge or discuss the disability.

Anyway, that's why I need to read the book, because I really am curious about the nature and extent of FDR's so-called "deception."

"FDR's Splendid Deception: The Moving Story of Roosevelt's Massive Disability-And the Intense Efforts to Conceal It from the Public", by Hugh Gregory Gallagher, 3rd Edition, 1999

Unemployment Followup

I reread what I wrote yesterday about different kinds of unemployment / employment figures. It has occurred to me that the two kinds of figures suggest two kinds of employment goals for the disability community:

1. More people with disabilities working, and
2. More people with disabilities actively looking for jobs.

In theory, we should try to reduce the unemployment rate for people with disabilities to be closer to that for non-disabled people, while at the same time, increasing the number of people with disabilities looking for work. Initially, this would actually raise the unemployment rate, because more people would he counted who are looking but not yet hired. The goal would be to close both gaps.

Does that make sense?

A Bio And A Blog

Being A Blind Teenager

Kody Keplinger, Disability In Kidlit - July 8, 2013

Yesterday, I read this fantastic short biography by a Young Adult (YA) fiction writer, who also runs a collaborative blog of YA writers … Disability In Kidlit, described as, "Reviews, guest posts, and discussions about the portrayal of disabilities in MG/YA fiction".

Here are two of the best bits from the piece:

"That’s the thing about disability, I think. You’re a normal person, you experience normal things, and then, every once in a while, you hit that wall. That reminder that you aren’t quite like the majority of your peers. Most of the time it’s small things ... but it can still hurt like hell." 

"Before I wrap up here, I want to note that none of the typical “blind person” cliches fit me. I am not a musician, I don’t feel people’s face (eww, so weird!), and my blindness really played a very small part in my life. It occasionally impacted my friendships, it sometimes changed the way I did things in class, but for the most part, I was your average middle or high schooler. Your average middle or high schooler who just happened to use a cane and push around a cart with a big CCTV on it."

One day I hope to invite other bloggers to contribute to this site, so I'm encouraged to see a collaborative blog in the disability field.