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.

Coming soon ...

I've got some reading to do.

There have been several articles and radio programs recently. They are on the subject of disability benefits, possibly suggesting or "revealing" that lots of people on disability might not really be disabled in the conventional sense, but rather long-term employed and put on disability for lack of any other backup benefit to support them. That much I get from the headlines, but since I haven't read the articles and listened to the programs, I don't know the details, or what the journalists and analysts make of it all.  I've thought for a long time that disability was a messed-up program, but in very specific ways. I'm nervous about what people will think and conclude, given how easy it seems to be to misunderstand disability issues.

Sometime in the next day or two I plan taking a look myself, and maybe commenting.

%&@*#!

The disability movement needs more swearing.

Gotta Go?

This morning quite by chance, I ran across this Huffington Post article:

Time for New York State to Pass the Restroom Access Act
Rebecca Kaplan, Huffington Post

It's about a bill to require public places that have restrooms but only for employees to allow customers to use them anyway ... if they have "inflammatory bowel disease".

My first thought was, "Damn! I thought it was going to be about making public bathrooms wheelchair accessible!"

My second thought was that the law sounds like a good idea, but a bit narrow. Why couldn't public restroom accessibility be addressed more broadly, encompassing wheelchair accessibility AND overall access? One reason is that simply allowing someone to use your restroom doesn't require you to do anything to it to make it bigger or more maneuverable; it's just a matter of saying "yes" instead of "no".

Another thought occurred to me as well. Apparently, the proposed Restroom Access Act would require people asking to use restrooms under these special circumstances to prove the legitimacy of their need. The article even mentions an already existing calling card of sorts that is part of the Medic Alert institution ... a sort of get-to-use-the-restroom-without-being-hassled card. I can see how something like that might be useful, especially for a disability or medical condition that doesn't disclose itself ... that's "invisible". It's like something I've seen a few times in my life ... a deaf person using a card they carry around that explains to people that they are deaf and what accommodations would be most helpful.

I have thought on occasion that something might be useful to more people with a variety of disabilities. It might be useful to me, even though I usually manage to speak for myself when I need help from strangers. I'm uncomfortable, though, with the idea of something like this being "proof" or "certification" of my disability. Proof of need implies some terrible downside to someone getting something they don't deserve. Where, exactly, is the downside to getting a little extra help from staff in a public accommodation ... or getting to use an employee restroom when you have to go really bad, whether you have inflammatory bowel disease or not?

"Money, That's What I Want"

Money doesn't literally "buy happiness", but it's damned useful to people with disabilities.

Money is the ultimate adaptive technology. A wheelchair can only be useful as a wheelchair. You can't obtain food with a hearing aid. A counseling program won't help a quadriplegic get out of bed in the morning. Money, though, in the right quantity, can be translated into just about anything a person with a disability needs to unlock their potential and make their theoretical independence real.

Money can buy the materials, labor, and expertise to make a home wheelchair accessible.

Money pays for the training and care of a guide dog for a blind person or service dog for a wheelchair user.

Money funds innovation in prosthetics, and purchases the results for an individual amputee.

Money can be exchanged for the consistent, reliable personal care that can only be obtained otherwise through family ties or the kindness of friends or volunteers.

Sometimes, money can even buy a more individually-crafted education for someone with a learning disability, or counseling and medications for people with mental illness.

Best of all, the money itself works well for any of these or other uses. It doesn't have to be re-designed in a different form for each use. Give 10 people with 10 different disabilities $50,000 to improve their lives, and the same money will be used for 10 different combinations of goods and services. In short, money is the most flexible, adaptable, and individualized disability program conceivable.

All of which is to endorse a radical notion, one that runs completely against conventional wisdom in several ways: give people with disabilities money, and more of it.

I'll have more to say about this, but for now, I recommend reading two articles:

Fighting Poverty By Giving Poor People Money

Matthew Yglesias

Moneybox, Slate.com

"There's more to life than just this, but I've come to think that directly transfering cash money to people in need is the most underrated tool around for fighting poverty."

The Federal Definition of a Broke Ass Cripple

Smart Ass Cripple

"SSI is the primary means of income for about 7 million broke ass American cripples. And I do mean broke ass. The average monthly SSI payment is $519."

The first article doesn't say anything directly about people with disabilities, but both articles point in their own ways to how obvious, and maybe overlooked, the importance of money is in alleviating poverty. I don't think there is a group of "disadvantaged" people who can make more effective use of plain and simple cash than people with disabilities.

And then there's this ...

Disability As A Topic

I think that I got two topics confused the other day in my blog post titled, "D Section, Back Page". On the one hand, I have been thinking about the fact, as I have observed, that personal stories about one's disabilities are just of limited interest to others as a topic of causal conversation. At the same time, I was thinking about how disability issues are categorized and prioritized, in part by newspapers, but also in other media and political discourse. I feel like people's limited interest in the day to day problems of a person with disabilities is reflected in the fact that disability is rarely seen as something of broad, national concern.

This is a problem, but I don't disparage this lack of interest or attention. Despite decades of progress, disability is still largely viewed as a medical problem, and is there anything duller than other peoples' aches and pains? To be sure, most people will focus and feel appropriate concern, for a short time, when confronted with an individual disability story. But these have a notoriously short shelf-life. At some point, you just want to ask, "Is there anything else we can talk about?"

The reason this is a problem is that disability is also about fairness and equality, laws and policies, labor and economics, debt and the role of government, education and poverty, freedom and security, youth and aging, gender and sexuality, and yes, it's about how fairly and effectively health care is delivered to everyone.

Disability in the narrow sense isn't the most interesting or central topic imaginable, for anyone but those of have one, but it is a useful and often unexplored pathway the most passionate and critical debates currently going. Its in that sense that I think it belongs on the "Front Page".