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.

Disability News

EEOC Seeks Damages for Disabled Iowa Plant Workers

Ryan J. Foley, Associated Press - April 22, 2013

DHS: Disabled Henry’s workers berated, harmed daily

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.

Federal court clears way for execution of mentally disabled Georgia man

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. 

For Boston bombing survivor, a life-changing decision

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.

Creating A Forum

Some time soon, hopefully by the end of next week, I will be adding a second feature to the Disability Thinking website ... a Forum. This will be a separate page where readers will be able to view and participate in discussions on a wide variety of disability-related topics. You will be able to browse and partially participate as a "guest", or register for free and create a user profile, which will allow you to participate fully. I anticipate that the Forum will have a number of ways to participate, including:

- 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 ...

Monday - Disability News

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

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.

Roger Ebert Review of "My Left Foot" - February 2, 1990

Photo Of The Week

This is the ramp at my apartment building. It's a good place to demonstrate the fact that ramps aren't just for wheelchair users. I walk, but for me, going up and down this rather long ramp is easier, safer, and less tiring than using the short stack of four steps of the building's main entrance.

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.

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.

"My Left Foot" Postponed

I haven't had the time to watch "My Left Foot" yet, so I'm planning on watching it and posting a full review on Saturday.

I suppose I could post a review now, based on my memories of the movie, but it's been a long time since I saw it all the way though, and besides, I'm interested to figure out whether I feel differently about it after a 20-year gap.

"My Left Foot" is available on Netflix Streaming.

What's Wrong With "Disability?" Part 2: Maybe Nothing!

This discussion about the recent NPR radio programs on Social Security Disability's programs suggest that there may be little or nothing wrong with Disability at all. They still don't mention Social Security Work Incentives, but it does seem like an example of cooler heads prevailing.

Incidentally, anyone who wants to understand economics and politics beyond moral denunciations and partisanship should make the Washington Post's Wonkblog a daily visit.

I also recommend these two other, less panicky views of Disability:

Leave Disability Insurance Alone!
Matthew Yglesias, Slate.com

Yes, Disability Payments Are Up, But It's Nothing To Be Surprised About
Kevin Drum, Mother Jones

Extra! Protest at the White House

ADAPT, (American Disabled for Attendant Programs Today), is protesting at the White House today, criticizing the Obama Administration's disability policy record. Apparently, people are being arrested.

I'm not a fan of most political protests. I approve of them; I just don't personally like them. However, ADAPT almost always knows what its doing. They have a knack for street theater, and they keep it fresh. ADAPT's demonstrations never seem like dusty Vietnam retreads. Most importantly, ADAPT always makes it crystal clear exactly what they want, publishing detailed position papers for each protest. The position papers themselves are specific, never vague or airy. What they propose is always not only symbolic, but useful.

Read ADAPT's position paper for today's protest at the White House. I don't claim to understand every policy reference, but overall it seems like an ambitious but realistic set of demands that the Obama Administration could, conceivably agree to.

Notice that none of the demands include legislation that would have to be voted on by Congress. They are all things the Administration could do on its own, without having to corral votes. After recent defeats and stalemates on gun control and the budget, here's a policy area where the Administration could make actual progress, and actually please a large, diverse political constituency ... people with disabilities.

Disability News

Walmat Accused Of Violating Disabilities Act

Michelle Diament, Disability Scoop - April 16, 2013

I have no trouble believing that an employee with developmental disabilities was sexually harassed while working in a "big box" retailer, and as one commenter on the article pointed out, the Federal EEOC doesn't just take any case that comes along. What interests me is the statement that, “Ms. Wells’ impairment made her particularly vulnerable to sexual harassment." Maybe so, but harassment falls under the Civil Rights Act, (which the EEOC is also using), not the ADA. Just because she also has a disability, doesn't necessarily mean the harassment was disability-related. I hope we get to hear exactly how her disability related to what happened to her.

Helping the Disabled to Live With Dignity in Jordan's Zaatari Refugee Camp

Caroline Gluck, Huffington Post - April 16, 2013

I found this story oddly uplifting, even encouraging. First of all, it reinforces the idea that cultural, regional, and religious differences that sometimes seem to mean everything, are actually pretty minor when it comes to the devotion of parents to their children, in even the worst situations. Second, although they apparently weren't ready yet at the time the article was written, the refugee camp is going to have wheelchair accessible toilets and showers. IN THE REFUGEE CAMP. I'll remember that next time I consider being all patient and understanding about a restaurant that can't manage to get a wheelchair accessible restroom right.

Athlete with disability offers words of hope for survivors who lost limbs

Mark Sullivan, Worchester, Mass. Telegram - April 17, 2013

It might be a bit too soon for some of the survivors of the Boston Marathon bombing to fully absorb this man's message, but I hope that soon they will be ready to hear it.

Prince Harry to race to South Pole

British Broadcasting Corporation - April 19, 2013

It would be easy to dismiss this as a royal stunt, and maybe that's what it is. Also, it's quite possible that Prince Harry will turn the whole thing into a tear-jerking exercise. Still, I think there's a better chance that he'll do it right. A genuinely empowering, informative, and modern-day approach to calling attention to disabled veterans could be extremely valuable, especially if led by someone like Prince Harry, who's image combines the prominence of a "royal" with a touch of human fallibility. He's done some stupid things, but he always seems serious and informed about the "charities" he joins.

V. A. Aims to Reduce Its Backlog of Claims

James Dao, New York Times - April 19, 2013

The V. A.'s Disability Distress

Mark Thompson, Time Magazine - April 22, 2013

This is the kind of issue I hate the most. There ought to be discoverable facts underlying why the V. A. is behind in processing veterans' disability claims, but instead of learning about them, mostly we get politicians scoring political points, and cynicism from the very people who have the most to lose. I'm no better;  my first thought was to wonder whether the Bush Administration was somehow. Maybe later this week I'll write something about Kayla Williams' blog posts on this subject. 

When police meet someone with an invisible disability

Paul Rolly, Salt Lake Tribune - April 22, 2013

I have trained police cadets on dealing with people who have disabilities. It is one subject where "disability awareness" is actually the most valuable and realistic goal. You can't ask police officers to know about and recall every nuance of every physical or mental disability, and apply the knowledge in every tense situation. You can make them alert to the possibility that disability could be a factor in any situation. Just that alone can help reduce many unfortunate, and tragic, misunderstandings.

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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.

This Week in Disability Thinking ...

Monday - Disability News

Tuesday - What's Wrong With "Disability"? Part 2

Wednesday - Pop Culture Review: "My Left Foot"

Thursday - Being The Elephant

Friday - Photo Of The Week

Photo Of The Week

You see a lot fewer round doorknobs these days, and that's a big improvement.

More About "Awareness"

“I Am Montclair” Brings Diversity, Disability Awareness To Montclair Film Festival

Baristanet Staff, Baristanet.com

Last week, I asked, What Is "Awareness"? … specifically, what is "Disability Awareness?" Today I read an article about a disability awareness campaign involving filmed interviews in Montclair, New Jersey, organized by the Montclair Township Advisory Committee for People with Disabilities. In the article, Committee Member Lily Vakili says:

“The film was born out of the Committee’s interest in helping the broader community better understand what disability means and that, with education, familiarity and compassion, we can each choose to create a more integrated and supportive community."

This seems like a good start on what "Disability Awareness" might mean. We want people to "understand what disability means". The reason we want this is that we believe understanding will lead to "a more integrated and supportive community" for people with disabilities.

Not compassion or sentiment ... integration and support. These can be related to compassion and sentiment, but they aren't dependent on them. They don't even really depend on social acceptance.

The next questions? What do "integration" and "support" mean?

Revisiting "Ironside"

Ironside

NBC, 1967-1975

Raymond Burr … Robert Ironside

Don Galloway … Det. Sgt. Ed Brown

Barbara Anderson … Officer Eve Whitfield

Don Mitchell … Mark Sanger

Elizabeth Baur … Fran Belding (1971-1975)

When I saw that the TV show "Ironside" was on Hulu.com, I thought about grad school. My Master's Thesis was on depictions of disability in movies and television, and "Ironside" one of the TV shows I studied. Back in 1990, the show wasn't available on VHS, and this was back in the days of dial-up and 20 megabyte hard drives, so the Internet was no help. I had to spend five days at the Smithsonian Institution in Washington, DC, watching as many archived episodes as I could on reel-to-reel tapes. Actually, I had a great time.

I don't really remember too well what I thought about the portrayal. I think I thought it was fairly positive, and having watched five episodes on Hulu.com so far, I think the same thing today.

"Ironside" was a one hour police procedural focused on former San Francisco Police Chief, Robert Ironside, who in the pilot episode is shot and paralyzed from the waist down. He doesn't retain his official position, but serves as a quasi-official "special consultant" to the police department. He uses his experience, contacts, and above all his incredible crime-solving intellect to solve mysteries that stump the regular police. Chief Ironside sets up home and office in an old police department building, and is assisted in his work by Det. Sgt. Ed Brown and Officer Eve Whitfield (later a different female Officer, Fran Belding). Mark Sanger, an African-American, (who I think may be a reformed criminal?), is his personal aide and the third member of his investigative team. Ironside uses first a manual wheelchair, later an electric. Early in the series, he gets around town in an old converted armored car, later in an adapted van.

Ironside is portrayed as gruff, crotchety, and funny, with lots of snappy one-liners. Underneath, he's moral and kind. He works as hard to prove the innocence of people he believes in as he does to catch criminals. His personality seems almost completely that of a veteran police chief, and his disability only rarely seems to have altered who he is or how he thinks. In fact, I got the feeling that being accustomed to leading and issuing orders helps a lot in Ironside's ability to adapt to his disability. It's no big deal for him to tell members of his team to do this, go there, bring that, or help him do something he can't do for himself.

Ironside almost never appears depressed or regretful about his disability … although since he's kind of a grouchy sort anyway, it might be hard to tell if he was. I did see one episode where Ed is shot, and might be paralyzed, in which Ironside confides that, far from living well with his disability, "I die with it, every day." He said this in an effort to get Ed to agree to surgery that might end his paralysis, after Ed had indicated he would rather follow the Chief's example and accept his impairment. It made sense for the episode, but contradicted most of what the rest of the series shows. It felt like an anomaly, a false note in an otherwise very truthful show.

Ironside is a modern-day Sherlock Holmes, with three Watsons instead of one. Almost every episode features discussions or "skull sessions" where the Chief poses questions to his team, prodding them to think more sharply and probe beyond the obvious. The Chief is occasionally stumped, but never for long, and he often seems to be two steps ahead of everyone else. I got the sense that he likes it that way, too; he often keeps insights and theories to himself during investigations, maybe as an unconscious means of asserting control, or simply because he loves to savor a good logical puzzle and challenge his team to keep up with him.

In each episode I watched, there was at least one, but no more than two moments when someone would make an awkward reference to Ironside's disability. It's usually shown as a sort of social faux pas, or in the case of criminals, an instance of fatally underestimating the Chief's abilities.

For example, in one episode, the team identifies a place a half hour away where they hope to find a clue, if they can get there in time. A Sheriff's deputy says, "I can go now. I can get there faster", then pauses, looking at Chief Ironside as if he's said something insensitive." The Chief says, "That's okay, I'm not much good on a motorcycle. We'll meet you out there." He says this matter-of-factly. He's all business.

These moments are almost always incidental, and rarely crucial to the case. Disability on "Ironside" fulfills two functions. It underscores the idea that law enforcement is as much cerebral as it is physical. And, it is occasionally used to set up nail-biting physical risks for the Chief himself … situations where his team comes to the rescue. Even then, though, the Chief never backs down, physically. He intimidates just by slowly wheeling towards a crook with a gun. The bad guys get this look in their eyes, like they're thinking, "This is nuts! What am I supposed to do now?!" The Chief's unusual position and lack of apparent fear throw the suspect off guard just long enough for Ed, Mark, or Eve to show up and knock him down.

This show would be ground-breaking if it premiered today. I can't think of a TV show since that treats physical disability better than "Ironside". Disability is both central and incidental, and that is pretty realistic. For people with disabilities in real life, disability is both central and incidental … not necessarily an obsession, but something that comes up every day, even if only in small ways.

"Ironside" looks and sounds like a late 60's, early '70s show, and that can be distracting. The hairstyles, clothes, slang ("That's a lot of bread, man!"), and gender and racial aspects can be funny or at times genuinely appalling. I started watching one episode that was so full of racial stereotypes that I couldn't bring myself to watch it all the way through. The show's point of view seems to be that of a moderately progressive white guy who believes that some women are pretty capable and that certain black people are okay, but they have to prove it. Still, other than that one episode, I didn't find the period aspects too disruptive.

I would also remind younger readers that hourlong dramas in those days didn't include long story arcs or long-term character development. Each "Ironside" story is self-contained, and they rarely refer in any important way to events in previous episodes. Except for daytime soap operas, TV shows just didn't do that then.

My favorite "Ironside" moment so far? The Chief and Eve are riding in the back of the armored car, on the way to a crime scene. They're rocking back and forth uncomfortably, and Ironside says to Eve, "Police work … it's a hard dollar!" I feel like the same could be said of living with a disability. Maybe in a way they were saying that.

"Ironside" is an entertaining show. It has a subtle but meaningful message that people with disabilities can be effective when they have a good team with them, and use the strengths they do have to compensate for their impairments. It doesn't hit you over the head with big points, and it's definitely not sentimental. I like it a lot.

If you remember watching "Ironside", share your thoughts! Click the "Comments" link below.

Watch "Ironside" at Hulu.com.

What's Wrong With "Disability"? Part 1

Unfit For Work: The startling rise of Disability in America

Chana Jaffe-Walt, National Public Radio

I finally listened to this "This American Life" story on trends in Social Security Disability programs, and the series of shorter "All Things Considered" stories that basically repeat the same points in bite-sized pieces. My first reaction is that these programs aren't as terrible as I thought they would be. They include some valid observations. The problem is what the stories leave out.

Here are the main stories' main assertions:

* Starting in the 1990s, and continuing to today, the number of people on Social Security Disability programs has gone dramatically, despite factors that should have reduced the rate or at least made the rise less steep. So, something is clearly going on here!

* Without accusing anyone of outright fraud, the stories imply that lots of people on disability aren't really disabled, or if disabled, are in theory able to work.

* The stories suggest that most of these are people who can no longer do physical labor, and are not educated or socialized to make other kinds of work … "sit down" work or brain work … realistic for them.

* Since welfare reform in the '90s put a lifetime limit on benefits, disability has become a support system of last resort for people who for educational or social reasons can't find or keep jobs in today's economy ... whether or not they have bona fide disabilities.

* Some people other than the beneficiaries make money promoting this practice. Lawyers make money getting people on disability. States and counties shift welfare costs to the feds by getting people on disability. Private contractors are paid for every person they get enrolled in disability.

* On top of all this, people on disability are afraid to try working because working is less secure and certain, and they think working will cause them to lose their benefits. Some poor families depend on kids' disability benefits, and have mixed feelings about them doing well in school and eventually getting jobs.

* The program mostly blames a poorly designed system, not individuals. It's mostly sympathetic towards the individuals they profiled, even the ones who may in some way be "faking". At worst they are portrayed as uneducated, ignorant, and sad, not as evil or greedy.

That's what these radio programs are saying, as best I can tell.

Here is what I think the program got right:

* Having a disability and not being able to work are not the same thing, even though the disability program is based on the idea that disabled means unable to work. That does create a lot of contradictions and situations that can seem fishy or fraudulent.

* There are structural, systemic incentives for counties, states, social workers, doctors, and lawyers to put people on disability who maybe shouldn't be. Counties and states pay for welfare. The federal government pays for disability. So, states and counties have a financial incentive to get long-term unemployed people on disability. Meanwhile, they can continue taking credit for falling welfare rolls.

* A 50 year old logger with a high school diploma … or less … can't realistically expect to get a desk job in an office after they develop a back injury. The same goes for a nurse's assistant in a nursing home or someone who worked in a closed auto plant and just happens also to have diabetes. They may or may not be "disabled", but the definitely face major barriers to self sufficiency.

* I liked that they portrayed the issue as less an outrage than a dilemma.

What is missing from the story?

* There is no mention of Social Security Work Incentives and the Ticket To Work program. Social Security has components and programs designed to help people on disability get jobs and become more self-sufficient. That includes being able to work for pay and have benefits reduced somewhat, but not cut off. Most people can keep their Medicaid or Medicare, too. So, the disincentives are more perceived than real.

* There is nothing in the story about Vocational Rehabilitation, a program in every state specifically designed to help people with disabilities get jobs. True, their success rates are often disappointing, but they do exist and they can help counteract this trend.

* The story didn't mention a possibly similar set of incentives for public schools to put low-performing kids into Special Education. However, this probably calls for a whole separate show.

* There weren't enough reminders that some disabilities are invisible to others, but are quite real. People in the stories often said things like, "He doesn't look disabled". Just because someone doesn't "look disabled" doesn't mean they don't have disabilities.

* They don't talk to anyone with unambiguous, "classic" disabilities, like wheelchair users, people with cognitive impairments, blind, deaf, etc. They don't look at all at people with disabilities who do work, or are working hard to become employed. 

* They don't talk to any disability advocates, activists, or counselors in the nonprofit sphere. The story focuses in an unflattering way on the lawyers, the private-sector contractors, and somewhat on the doctors, but again, its as if there's nobody else in the disability world who might have honorable motives or a different perspective on "what's going on" with disability.

* It is also possible, and used to be very, very common, for people with really genuine disabilities to be improperly denied benefits, so some of the higher rate may be a appropriate correction. 

What concerns me most is that if someone goes into the story with a sympathetic and curious mindset, they are likely to come out of it interested in some sensible reforms. But, if they go in convinced already that disability is full of cheaters, malingerers, and con artists, they'll probably come out thinking the story has confirmed those views, too.

In my next post on this subject, I'll try to give some ideas about how to address this problem, if it even is a problem.

Disability News

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.

Sen. Rob Portman says the Social Security disability fund soon will run dry

PolitiFact.com - April 16, 2013

It sounds scary, and PolitiFact says it's "True", but there's more than one way to fund benefits if people decide they are essential. How about this … if an aging population means more people will be needing disability benefits in the future, maybe we can all pay a bit more to fund them?

Disabled in CNY worry about how cuts in New York budget will affect their lives

Teri Weaver, Syracuse Post-Standard - April 15, 2013

These specific cuts are unusual in that they are related to specific cases of corruption and mismanagement in New York State. While there are signs that the cuts may actually lead to improvements in service, greed and fear are powerful forces, and often get their way.

Facing Lawsuit, State To Shift Away From Sheltered Workshops

Michelle Diament, Disability Scoop - April 15, 2013

Sheltered Workshops vs. Supported Employment, like Nursing Homes vs. Home Care, is a contest between two distinctly different ways and philosophies of providing essentially the same service to people with disabilities. It is also, in a sense, a conflict between the old and the new, between something that used to be modern and progressive and something new that has moved the field the next few steps forward. But it's not just a change in fashion or fad, its about fairness, civil rights, and people with disabilities making true progress out of segregation and into full participation in the community. It's also about the bland safety of the familiar and the dignity and promise of risk. There's a lot at stake here, and most people without disabilities have no idea there's an argument at all.

Disability Advocates Call "Glee" Portrayal, "Poor Choice"

Michelle Diament, Disability Scoop - April 13, 2013

What's more important in a media portrayal of disability … being realistic or being positive? I haven't seen this episode, though I definitely plan to, but here's my initial thought. People with Down Syndrome are too often portrayed as innocent, angelic, and could use a bit of moral complexity to show that they're just as human as anyone else. However, accomplishing this with a plot involving a gun in a school … right about now … was probably not the best idea.

Case Western Reserve University medical student overcomes disability to become a pediatric surgeon

Michael McIntyre, Cleveland.com - April 13, 2013

I liked this story. Maybe "inspirational" disability stories wouldn't be so revolting if they bothered to explain how the person with disabilities does what he or she does? This article does that, by describing the new surgeon's stand-up wheelchair. He's a brave, determined man for sure, but we also learn that he's got tools, and that makes all the difference to me.

This Week in Disability Thinking ...

Monday - Disability News

Tuesday - What's The Problem With Disability? Part 1

Wednesday - Pop Culture Review - Revisiting "Ironside"

Thursday - More About "Awareness"

Friday - Photo Of The Week

Procrastination

I'm still procrastinating. I want to wade into the radio programs, newspaper articles, and blog posts that have come out recently about Social Security's Disability programs about as much as I want to experience my first prostate exam.

Before even reading the articles, my Spidey-Sense tells me that I'll find the kernels of a few important and possibly uncomfortable questions amidst a truckload of unconscious prejudice and fuzzy, shifting definitions. I feel like there's something here to talk about, but I just don't trust … well, anybody really … to do it right.

I've finally decided to take the gradual approach, starting with the piece that started it all, I guess … a collaboration between two very good National Public Radio programs, "This American Life" and "Planet Money" … "Unfit For Work: The startling rise of disability in America." I've been an off and on fan of "This American Life" for years, and their usual, non-sensational approach gives me hope that they'll do a decent, fair job of laying out whatever they think the issue is with disability.

So, I invite you to read and listen. I will, too, and be back with some initial comments before moving on to reading what others have had to say in the last couple of weeks.

Unfit For Work: The startling rise of Disability in America

Chana Jaffe-Walt, National Public Radio

About "Awareness"

Its often hard for us to communicate to others what we, as people with disabilities want, but something that gets mentioned a lot is "Awareness" ... as in "raise awareness about (fill in your specific disability, condition, or issue here)."

What, exactly, are people supposedly un-aware of? Why do we want them to become more aware of these things? How will our lives be better once people become "aware"? Is my version of "awareness" the same, or even remotely similar to yours?

Unfortunately, "awarenss" is one of those words that is widely used but rarely defined or explained. That makes it easy to dismiss or mock ... a piece of verbal fluff that makes it seem like we've said something, and allows us to avoid the difficult task of actually explaining ourselves.

But clearly, each person does have something in mind when they say they want to raise awareness about disability. So no joke, no snark ... I'm really asking, what does "disability awareness" mean to you?

Smart Ass Cripple on Roger Ebert

I knew that Smart Ass Cripple would have something to say about Roger Ebert. It's better than I expected, and I expected it to be great:

Viva Roger Ebert!
Smart Ass Cripple

I'm extra glad to have this, because it provides real evidence that Ebert was truly "one of us". Better yet, he so generously recognized a talent possibly equal to his, one with barely a shred of his fame. And he clearly learned, eagerly, from his disability experience, and bowed to the even greater (longer at least) experience of a fellow "cripple".

More About Roger Ebert

I only have one partially-formed thought to add on Roger Ebert.

"Famous People with Disabilities" are tricky, for many reasons. For one thing, some people are famous for their disabilities, while others seem to be famous for other things, and their fame spills over into the disability aspects of their identities. And then there are those who are, in fact, disabled in some way, but you'd never know it, and the people themselves never refer to it.

Roger Ebert seemed to take a different approach. He became disabled quite late in an eventful life, long after achieving the essential fame with which he died … as America's premier film critic, a role model for generations of film critics and just plain film lovers after him. He remained mainly a film guy after the onset of his disability, and never tried to put himself forward as a disability spokesperson or leader. But he did talk and write about his experience of disability, sparingly, carefully, but always with feeling and insight. Best of all, like the true critic he was, he sought out and publicly appreciated others with disabilities and what they had to say. Its almost as if he took pleasure in being a student of disability … the new guy so to speak. But a new guy who happened to have a gift for analysis and clear expression.

Film critics appreciate and strive to understand experiences on multiple levels, seeking both superficial pleasure and deeper meeting. Maybe that's why Roger Ebert's occasional discussions of disability were so fresh. He knew how to help others understand disability as he experienced it, while also finding deeper significance and seeing connections to other areas of faith, identity, communication, and politics.

I've collected links to many articles that came out yesterday about Roger Ebert, most of them from other film critics and others who write about popular culture. What I'll share here is a Tweet and a bit of affectionate satire from The Onion:

TV critic Mo Ryan Tweets:

"An Ebert quote that helped get me through some dark times: 

"I believe that if, at the end, according to our abilities, we have done something to make others a little happier, and something to make ourselves a little happier, that is about the best we can do. To make others less happy is a crime. To make ourselves unhapy is where all crime starts. We must try to contribute joy to the world. That is true no matter what our problems, our health, our circumstances. We must try. I didn’t always know this and am happy I lived long enough to find it out."

Roger Ebert Hails Human Existence As A Triumph

The Onion

Roger Ebert, RIP

I was working on a grant proposal form my former employer, and I needed to look something up so I opened my browser, and the first thing I saw was the very sad news that Roger Ebert has died.

To most people he was a movie critic, maybe The Movie Critic. And he was to me, too. But, over the last ten years as he battled cancer that permanently altered his physical appearance and functionality, he also became a person with a disability. And not just as other people reckon it. He wrote about it occasionally, and most recently his Twitter feed regularly included links to the Smart Ass Cripple blog, which I guess was one of Ebert's regular reads.

Once I finish this other thing, I'll come back and maybe post some links and further thoughts.