Tuesday - Accessibility Downtown
Wednesday - Pop Culture Review: "Forrest Gump"
Thursday - "I'm not one of them!"
Friday - Photo Of The Week
Sunday, May 5, 2013
Saturday, May 4, 2013
Recommended: Smart Ass Cripple
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.
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.
Thursday, May 2, 2013
Loose Cannons & Boys Who Cry Wolf
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"?
Wednesday, May 1, 2013
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"
"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.
-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 …
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":
Tuesday, April 30, 2013
What's Wrong With Disability? Part 3: Ideas
Are there fatal flaws in the way Social Security Disability is run?
After listening to the NPR series that seems to suggest there are, and after reading several articles and blog posts about the topic arising out of the series, I've come to the insightful and courageous answer … yes and no.
Yes, there probably are quite a few people collecting Disability who don't really have disabilities as most people understand the term. While some of this can be explained by the fact that "disability" has several different and equally legitimate meanings, I'm sure that there are some people who wouldn't be on disability at all if it weren't for other factors, like our wounded economy, age, and shifts in the nature of the workforce.
Yes, there probably are doctors, lawyers, and social workers who have ulterior motives for getting more and more people on Disability, whether it's direct profit, or a need to hide or unload more unemployed people so local welfare rolls stay low and the whole concept of "welfare reform" looks more successful than it may actually be.
That said …
No, Disability isn't going through the roof. It's rising but there are normal, honest reasons for that, including the overall aging of the population. As the Baby Boom generation nears retirement, some of them won't make it all the way there before their bodies "give out" in some way, forcing them to use Disability to bridge the gap until they reach retirement age.
No, Disability isn't literally going to run out of money. If and when the current reserves run out, Congress can and probably will figure out another way to pay for Disability. No matter how harshly we speak about some of the unemployed, I don't think that society is prepared … morally or practically … to allow millions of people with disabilities and / or other marginal conditions to starve and go homeless.
No, Disability is not a dead end. The tools for self-sufficiency are already located within the program itself, and it is increasingly linked with vocational rehabilitation and other programs that can help people with disabilities pursue work and careers. These programs aren't well known and are under-used, but that can be changed.
No program is perfect; they all have room for improvement, Social Security Disability included. Here are some ideas:
- Stop hiring for-profit companies to do the work of helping Disability applicants. Hire only not-for-profit agencies, and carefully calibrate their funding so that they are able to hire well-trained staff, but not to accumulate wealth or pay massive salaries to management. This will help take the profit motive out of the system, and render lawyers a true last resort for people with only the most complex appeals.
- Strengthen Social Security Work Incentives. Make them simpler, easier to understand and use, and then put more effort into publicizing them. Make helping people with disabilities work towards self-sufficiency a central goal of the Disability program.
- Strengthen the programs that help all people who are unemployed, so there is less need to refer people to Disability who may not belong there, while making sure they do receive help when they need it. This should take into account the fact that economic downturns, large-scale changes in industries, and age are real, difficult factors to overcome for people looking for jobs.
Above all, let's not forget that Social Security Disability programs, for all their shortcomings, do achieve their most fundamental goal. In a time most of us are too young to remember, disability was virtually synonymous with extreme poverty. That's no longer the case, due in large part to Disability. That's a real accomplishment that unfortunately is hard to appreciate, because we've forgotten how bad things can really be.
Monday, April 29, 2013
Disability News
Ryan J. Foley, Associated Press - April 22, 2013
Brian Wellner, Quad City Times - April 25, 2013
The only good thing that could possibly come out of this horrific case of long-term abuse is that the lawyers of the Equal Employment Opportunity Commission will have the opportunity to be really specific about exactly why this is a horrific case. Things like this are so shocking that we tend to stop at shock and never get to the rationalizations and assumptions that lead to this kind of abuse:
- These "boys" aren't good enough for regular jobs, they're lucky to have us!
- You have to treat "retarded" guys like children to get them to behave.
- If it wasn't for kind-hearted us, they'd be out on the street or drawing a government check.
- What we're doing must be okay, because we're a charity and we mean well.
The thing is, there are thousands of less dramatic examples of the same kind of abuse to be found all over the United States … from sheltered workshops where people with disabilities are paid less than minimum wage, to nursing homes that basically confiscate what little income you have, then give you an allowance. People can be bad, but systems are often evil, too.
There are two other things I'd really like to know more about. For one thing, why is this case focused only on the Americans with Disabilities Act? It sounds like there were multiple violations of OSHA and minimum wage laws, not to mention possible charges of indentured servitude (slavery). Second, I'd like to know how many stiff drinks that social services investigator, Natalie Neel-McGlaughlin, had to have before she could stop crying.
Associated Press / The Guardian, UK - April 24, 2013
I am personally opposed to the death penalty but it's a close call for me. It's not a close call to me for anyone with significant cognitive impairments. Apart from any arguments of law or even morality, the idea of solemnly, with legal sanction, killing someone who may not fundamentally understand what's happening gives me the most horrible case of the chills. Speaking of which, I highly recommend the film "Dancing In The Dark", but only if you have access to some sort of grief counseling afterwards.
Don Dahler, CBS News - April 26, 2013
This woman's story shows the starting point of what I would call a healthy attitude towards disability. Brutally practical.
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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.
Sunday, April 28, 2013
Creating A Forum
- Creating your own topics to spur discussion.
- Adding your own comments to existing discussions.
- Communicating directly and privately with other registered members.
- Participating in polls on various disability-related topics.
My goal here is to create an online community for disability discussion and sharing. I hope it will be a place you will visit frequently. Its intended to be for both fun and learning, enjoyment and growth. Participating in the Forum will be free, as personal or anonymous as you want, and secure.
Right now I am learning how to set up and operate the Forum, using an application called vBulletin. You can click on the link now to see what a typical forum looks like. Once I set it up, I will link to it, and to this Blog, from a central home page for Disability Thinking. You will be able to start there, and then choose to visit the Blog or the Forum each time you visit.
If you have questions or ideas about this next step in the development of the Disability Thinking website, you can post them in the Comments for this post, or email me directly at: apulrang@icloud.com.
This Week In Disability Thinking ...
Tuesday - What's Wrong With "Disability"? Part 3, Ideas
Wednesday - Pop Culture Review: "Game Of Thrones"
Thursday - Loose Cannons and Boys Who Cry Wolf
Friday - Photo Of The Week
Saturday, April 27, 2013
Pop Culture Review: "My Left Foot"
My Left Foot
1989, Directed by Jim Sheridan
Academy Award for Best Actor - Daniel Day-Lewis as Christy Brown
Academy Award for Best Supporting Actress - Brenda Fricker as Mrs. Brown
"I've had nothing but Platonic love all my life. You know what I say? Fuck Plato!" -- Christy Brown, "My Left Foot"
"My Left Foot" is the first movie I can remember seeing that seemed like an authentic portrait of a person with significant disabilities. It helps that it is a film version of the autobiography of a real person, Christy Brown, who became an acclaimed painter and author. The "left foot" in the title refers to the fact that Brown wrote with his left foot, the only part of his body he could fully control.
The film is about more than Brown's disability. It is about the hardships and endurance of working class families in mid-century Ireland. It is also about artistic talent, which can appear where you least expect it.
The most compelling scenes of the first half of the film establish the bonds between Christy and his brothers and sisters. They clearly see him as more than a pet, never as a nuisance, and while he has a unique status of sorts among a large crowd of children, Christy's older siblings especially deal with him as an equal. As for Christy, one of the best scenes of the whole film involves him weighing in against his Father on behalf of his sister … in a matter that isn't directly about him at all. In fact, Christy's most dynamic moments come in key scenes in which he physically or emotionally sticks up for his Mother, Sister, and Father. That is rare in movies about disability, which usually imply that people with disabilities think and act only in regard to themselves.
Christy in this movie is often mischievous, manipulative, and antisocial, but we are never led to believe that this is solely because of his disability. His family heritage, wild talent, sense of humor, and alcoholism make up large parts of Christy's character, and would have done had he never had a disability. The main disadvantage of his Cerebral Palsy ... aside from the obvious practical difficulties with speech and mobility ... seems to be his difficulty and delay in experiencing love, and this is as much due to others not knowing how to respond to him as it is his own issues.
A key part of his later story shows us two very different women who are both caregivers and potential lovers in Christy's view. One is oblivious until too late, and makes for some truly cringe-inducing moments. The other seems onto him from the start, and this serves her better, as well as Christy. I found it interesting that the more educated woman, an expert in the treatment of Cerebral Palsy, was far more clumsy than than the part-time nurse who had never even met Christy before. Training and familiarity don't always mean understanding where disabilities are concerned.
I look for four things in a film about disability:
- Believability.
- A fully developed character, not a one-dimensional cardboard cutout.
- Disability explains some, but not all of what the character does.
- As few cliches or stereotypes as possible.
There are no real miracles in "My Left Foot", and both the actors' performances and the sets make it quite believable. Christy Brown is shown to be a complex, highly intelligent, flawed and passionate person, neither an object of pity nor a saint. Disability is an important part, but only a part of Christy's life. And the only real cliches or stereotypes are some rather heavy-handed messaging about Irish peoples' supposed love of boozing and brawling.
Best of all, "My Left Foot" is funny, real, and never syrupy.
Note: If you want to read a professional critic's review of "My Left Foot", take a look at Roger Ebert's. It's great to see how perceptive he was about disability, decades before he experienced it himself.
Friday, April 26, 2013
Photo Of The Week
Thursday, April 25, 2013
Say Hello To The Elephant
Usually the phrase, "elephant in the room" refers to a massive but unspoken truth, studiously ignored but inescapable. I think it well describes the social position of people with disabilities.
Like an elephant, we take up a lot of space ... physical space and social space.
Wheelchairs are big, some of them really big, and not as maneuverable as a person on foot. People who use walkers or crutches have an unusual "footprint" as well. Even those of us who don't use equipment but merely "walk funny" carve out a differently shaped space as we move through rooms and hallways.
We need different arrangements and setups. Chairs need to be moved around. Some of us are always looking for a ride. We can only eat or shop in certain places. Some of us need things explained differently. Our feelings and emotions sometimes work in perplexing ways. We are high maintenance. Because of this, we take up more than the usual amount of "mental space" in the lives of our family, friends, and coworkers.
It helps a lot when environments are already very accessible, and when people are cheerfully accommodating, but that feeling of being a physical impediment and a bother never completely leaves us. Some of us feel it every day. If we're lucky, it hits us maybe a few times a month, when we least expect it.
It hits us when people stare at us just a bit too long; I've especially noticed it when people walk past me and then turn their heads as they go so they can keep staring longer.
It hits us when people sigh and grunt and act out a little play of exasperated weariness when we ask for extra help or some little accommodation out of the ordinary.
It hits when a close friend or member of our family says something so wrongheaded or cruel about our disability, usually out of the blue, that we wonder whether we really know them at all.
It hits us when we trip and fall, spill or drop something, or knock something over, and the room goes silent, and it feels like we can be sure what everyone is thinking. It's our fault for ... whatever, for not accepting help when we should have, for not being careful enough, for being self-centered, for coming here at all when we are clearly ill-equipped.
It even hits us when people say what an inspiration we are, how amazing it is that we are able to function on the most minimal level. Kindness is kindness, but sometimes it's misplaced and distancing.
It even hits us when people say what an inspiration we are, how amazing it is that we are able to function on the most minimal level. Kindness is kindness, but sometimes it's misplaced and distancing.
When these elephant moments happen, we resent it, and resent the people around us who remind us of our difference ... our literal and figurative size. Is it depressing? Sure it is. Should people be more sensitive? Absolutely. But, is it really surprising?
I think not. I don't like it, but expecting people to not notice my disability and the inconveniences it sometimes causes is ... well ... like asking people to not notice an elephant in the living room. This is especially true for strangers and causal acquaintances, but also for people closer to us, from time to time. And while I could live without the really offensive, embarrassing moments, I also don't appreciate it when people claim they "don't notice" my disability or don't think of me as disabled.
Having a disability is part of who I am, for good, bad and indifferent. Sometimes my disability is a very small thing; sometimes it's an elephant. Some days I sure do wish for better reactions, but I've always got to expect some reaction. It's better if we all ... disabled and non-disabled alike ... just say hello to the elephant, give it some room, and get on with living.
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