Friday, January 31, 2014

Music For A Friday Evening

Earlier, I mentioned reading something today that nearly “broke my brain”. For whatever reason, this song nearly broke my brain when I first heard it back back around 1989, and this is my favorite performance of it.

No Raise For You!

Advocacy topic icon
Michelle Diament, Disability Scoop - January 31, 2014

To be honest, I held off posting about this for a few days, even though I think its hugely important, because I didn’t like any of the articles or blog posts about it. They tended to leave the impression that “all” disabled workers would miss out on the Minimum Wage raise for federal contract workers. It only applies to workers under the 14(c) exception to the federal Minimum Wage law. Not that it isn’t a terrible enough as it is, but we should remember that laypeople might actually be listening, and most of them don’t know anything about how disability issues like this work.

Anyhow, Disability Scoop has done a good job of summarizing this thing, and it’s update indicates that some heavy hitters are getting on the case. Frankly, I think that for the moment, this should be Issue #1 for the disability community … or those portions of it who are willing to scrap this stinking relic of a policy.

As a side note, Vice President Biden will apparently also be leading a review of all employment training programs, which I hope will include vocational rehabilitation. If it does, then he will probably end up dealing again with 14(c), which even traditional voc. rehab. is increasingly abandoning. I believe that in my home state of New York, voc. rehab. will still place some people in sheltered workshops, but won't consider such placements "successful closures", which is actually a pretty effective way to kill off the practice and combat the philosophy behind it.

Our Religion And Our Science ...

"My religion can never be science. This is the difference between navigating the world and explaining it.” -- Ta-Nehisi Coates, The Atlantic - January 31, 2014
It’s risky to take insightful words meant for one discussion and apply them to another. I’m going to do that now, though, because when I read the lines above in an article by Ta-Nehisi Coates about different ways that African-Americans process their history, culture, and politics, it nearly broke my brain because it seemed completely applicable to a basic duality for the disability community.

What’s our duality?

Ideas topic icon
On the one hand, there are things we as people with disabilities can do, and ways that we can behave, that can help us navigate this world successfully. We can educate ourselves, master our disabilities as best we can, plan the accommodations we need so its easier on everyone else, dress well, and practice ignoring the stares and always smiling. These things will help, and not doing them usually makes life harder for us.

On the other hand, the problems we face aren’t primarily because of things we fail to do or how we act. “Putting our best foot forward” doesn't remove the fundamental barriers that confront us. They exist independently of us. The world isn’t designed for people like us, and it’s getting better only very slowly. Being polite doesn’t cause ramps to materialize. Education does’t guarantee a job or even a decent shot at one. Smiling in the face of prejudice is often impotent, or worse, complicit. People have misguided and even hostile impressions of disabled people that they’ve learned on their own, whether they’ve met lots of disabled people or not. The roots of ableism are very, very old, lodged still deep in the lizard brain.

Which is why the quote rocked me so hard. I believe two contradictory things with equal conviction:

1. Every disabled person has available to them tools and strategies for making their lives better, and we are individually responsible for locating and using those tools to the best of our ability. If we aren't sure what those tools are, or where to find them, there are a lot of us around who are willing to help each other. I believe this to be true.


2. The most significant barriers we face aren’t of our own making, and nothing that we do individually is going to shift them an inch. There is hope for change if we work together, but it won’t always be fun, it won’t be easy, and it will sometimes make people uncomfortable. But if we don’t engage and try, then the only successes we’ll see for disabled people will be the kind of anomalies and one-off lucky breaks that get featured on slow news days. And thank God for them! They remind us of what success can look like, and chip away at non-disabled peoples’ preconceptions. It’s just that there are hard realities and quantitative facts at play that individual moral fortitude alone isn't going to change. I believe this, too.

The first is about self-help, and you could say it’s our religion. It’s a faith that if we try to be the best people we can be, we will see some reward. Also like religion, we commit to it for it’s own sake, even when we can see that it makes little difference to objective reality. 

The second is the objective reality that resists attitude, pluck, and even hard work, but can be analyzed, mapped out, and understood. And if understood, changed or at least shifted with smart, thoughtful collective action.
“My religion can never bee science. This is the difference between navigating the world and explaining it.”
It has never been clearer to me that we need both in the disability community, and that we need to evaluate each effort differently, by different criteria, because they have different, though complimentary goals. It's why Centers for Independent Living do both services and advocacy.

For what it’s worth, it feels good to be able to think about it this way.

Book Club Reminder

Book cover for "The Man He Became" with photo of young Franklin Roosevelt
Tomorrow evening I will post the second part of my three-part “Book Club” on James Tobin’s new FDR biography, The Man He Became: How FDR Defied Polio to Win the Presidency. I’ll be discussing Part Two: “He’s Through”.

Part One: “Virus and Host” described how Franklin Roosevelt, a promising Democratic politician with Presidential aspirations, contracted Polio during a summer vacation in Maine, and how he, his family, friends, and political allies learned what the disease might mean for him personally and politically. Tobin suggests that if this was the start of what has been called a “Splendid Deception” to hide Roosevelt’s disability, then it was a very complex, ad hoc, and mutual deception. Nobody really knew how disabled he would be in the long run, FDR himself seemed both to know things were worse than people were saying, and determined to “fully recover”. Several doctors and therapists disagreed over what, exactly should be done. And FDR’s closest, most savvy political aide, Louis Howe, didn’t so much mastermind the hiding of Roosevelt’s disability, as he improvised at each step to put off a larger reckoning that might, or might not have to come. In short, in those first weeks and months after Polio attacked, everyone was just trying to muddle through.

In Part Two, we will see how Roosevelt and his team started coming to terms with the fact that some degree of disability was probably inevitable and possibly permanent. Roosevelt starts to take command of his own rehabilitation. Meanwhile, the ebb and flow of national politics create some key openings for Roosevelt, if he’s able to “walk” through them. He does, in a way, and we will see how.

I can’t say enough for this book. Despite being about one of the most famous figures of the Twentieth Century, it contains a huge amount of information and ideas that will be new to most readers. I find that it also resonates on many frequencies for people with disabilities today. No matter what preconceived feelings you might have about FDR going in, if you are disabled or have people in your family who have disabilities, you will find yourself feeling very personally connected with him as he deals with an almost complete derailment of all his life’s expectations. Even though we know how it turned out for him, there’s real suspense here.

If you want to catch up, I also recommend the audiobook, available from

Thursday, January 30, 2014

Photo Of The Day

Woman in a "Tank Girl" costume, in an electric wheelchair
I’m not really into Cosplay, but this is really cool.

From the Just Rollin’ On Tumblr blog.

Another "Today Show" Piece Has My Mind Spinning

Scott Stump, NBC Today Show - January 28, 2014

I have so many mixed and contradictory feelings about this story about Nick Santonastasso, a 17 year old with a rare condition that includes having no legs and just one under-developed arm. The article is all over the map about Nick’s various activities, but the gist is that he’s a very outgoing guy who seems to have a personal mission or motivation to, in his words, “inspire” others. That’s where my mixed feelings begin.

As I’ve noted before, over-use of the word “inspire” or “inspirational” to describe disabled people is one of my “beige flags”. I find it annoying and I get so tired of it, but I can’t really say it’s offensive or wrong. Mostly I think it’s lazy shorthand for a sort of generic “positivity”, most often used by journalists who don’t know how to explain peoples’ feelings about disabled people who do neat stuff.

But here, it’s the disabled guy himself who uses the word most. He’s quoted using the word 6 times in the article, unironically and uncritically. It seems like its the word he chooses. For the record, other people … family, friends, coaches … are quoted using “inspiration” 3 times, and the article’s writer adds 3 more mentions. In total, the article contains 12 instances of some form of the word “inspirational”. I think that’s a lot. I think it suggests that the word is doing more than just filling a space. It’s standing for something meaningful to the people involved. I’m honestly not sure what that is, and notably, the article doesn't really explain what it means, either.

I’m also not sure what to think about Nick's whole zombie ambush routine. Is it brilliant and satirical for him to connect the very popular zombie theme with his particular kind of disability? Or, is he unwittingly putting on a freak show? Maybe it’s a little of both. We laugh because people are momentarily scared by his appearance, which Nick plays up for all its worth. Is it just funny in a “boo, I scared you!” way, or does it also remind us that people still have very primitive, caveman reactions to people who are “deformed”?

I wonder if Nick has thought about these things. He’s only 17. Maybe these are thoughts and inner debates he’ll go through in a few years. Maybe he’s not aware that a lot of his fellow disabled people are sick of being called “inspiring”. On the other hand, 17 isn’t 10. Maybe he knows exactly what he’s up to. Maybe “inspiring” is exactly the right word as far as he’s concerned. Maybe he doesn’t care what the rest of us might think about it. Or, maybe he’s just a kid like many others who gets a kick out of using social media to express himself and get a little bit famous.

Nick says in the article that he's never met anyone else with his condition, but that's because his specific condition is extremely rare. I wonder if he's met other physically disabled people ... amputees, wheelchair users? Or, does he get most of his signals on what it is to be a disabled person from non-disabled people, like his parents, teachers, and friends? How much of a difference might that make?

It’s hard to tell from just the article, but I have the feeling that Nick is off to a pretty good start as a thoughtful, disabled person ... but just a start. He may make a terrific advocate and peer mentor. He’s probably got a few unexpected realizations ahead of him. I hope if he does, that he comes out happy and positive in the end, with maybe a touch more sophistication and a clearer expression of what he's doing.

Wonkblog Interview On Work And Disability

Harold Pollack, Washington Post Wonkblog - January 24, 2014

This was a very nice surprise. I’ve never seen the intricacies of disability, employment, benefits, and “work incentives” discussed so clearly and accurately in a “mainstream” article.

I think that the key was structuring the article around an interview with an expert on disability, work, and benefits … someone who has disabilities and uses work incentives in his personal life. I even appreciated how Pollack asked Entwisle some personal questions about his disability. He asked carefully, respectfully, and with a purpose greater than intrusive curiosity. Starting with Entwisle’s day-to-day routines made the financial and policy details they were there to discuss more meaningful and real.

I found it interesting, too, that the interviewer, Pollack, immediately zeroed in on some of the illogical side effects of disability employment policy ... "disincentives" that people with disabilities have been complaining about for decades. Sometimes it's annoying when non-disabled people "discover" injustices we've known about for a long time. But somehow, this time, Pollack's surprise and bit of incredulousness just felt like a validation.

The only thing that made me a little uncomfortable is that Entwisle seems to come from a mindset where “employment” means well-paying, credentialed, white-collar employment. Since he’s a policy analyst, maybe that’s natural. But I do wish he had said more about people for whom “employment” means minimum wage, irregular hours, and sporadic employment. Maybe Wonkblog can do a followup interview someday to cover more bases.

If you want to understand how existing work incentives programs work, this is a very good place to start.

More of this please!

Wednesday, January 29, 2014

Journalistic Disability Clichés

"How Not To Write About Disabled Folks."
From the Ramblings Tumblr blog, via via too brain fogged for this.


Presidential podium with two microphones and the Presidential seal
I had fun last night joining the Live Tweeting party, (or whatever you call it), among people with disabilities during the State of the Union Address. It worked pretty smoothly. Everyone showed up to this particular site that uses Twitter, and when signed up, every Tweet you issued automatically included the hashtag “#SOTU4PWD”. That way, all of the Tweets for that topic would be visible together. You’d send out Tweets with observations connected to the speech, in real time, and also read what others were Tweeting, in real time. You could also Retweet things other people said if you really liked it or they said it better than you could. The result was a lineup of scores, maybe hundreds of comments about the State of the Union Address, from a disability perspective.

I didn’t stay after the speech was over, so I missed what was probably some pretty intense Tweeting about the "Republican Response” speeches. Apparently, the main Republican Response was given by a Congresswoman who has a child with Down Syndrome, and she talked about that a bit in her remarks. I don’t know what she said, but in skimming some later Tweets and some blog post comments, I got the idea that some folks were glad she highlighted independent living and community integration concepts, while others resented her “use” of her child to make partisan political points. Others, also, pointed out that her views and goals on disability were at odds with her conservative political philosophy. I’m sure there’s lots to chew over about all this, and I’m half disappointed, half relieved that I didn’t try to wade in.

Twitter logo
So, what about the speech? Not bad. Not spectacular. Certainly not one of President Obama’s best. From a disability perspective, on the surface, it was a bust. Unless you count the moving story of wounded Army Ranger Sgt. Cory Remsburg, there was no mention of people with disabilities at all. The focus with Sgt. Remsburg was all about his recovery and sacrifice, not about his disability or any policy implications that might flow from that. Which is fine. He was there for a different rhetorical purpose that was valid in itself. It was a bit strange that “disability” wasn’t even included in the usual list of social groupings seeking equality … such as gender, race, and sexual orientation.

However, I wasn’t surprised or even very disappointed that the speech didn’t include any disability policy proposals. The reason I wasn’t disappointed is that most of the proposals that did make it into the President’s speech could be connected with disabled people and disability policy … and were by dozens of disability Tweeters during the Live Tweet.

- Small Business? How about helping people with disabilities start their own businesses? What about tying Federal small business loans to accessibility compliance?

- Raise the Minimum Wage? Great! And while we’re at it, how about ending the practice of paying sheltered workshop workers less than Minimum Wage, whatever it happens to be?

- Saving for Retirement, Expanding the Earned Income Tax Credit? Why not allow disabled people to save and invest without losing support benefits?

- VP Biden’s To Review All Job Training Programs? Does that include Vocational Rehabilitation? (I hope so!)

- Foreign Policy? Ratify the UN Covention on the Rights of Persons with Disabilities!

There is one topic that I think really should make it into the upper tier of State of the Union Address issues, and that is Long Term Care, for people with disabilities including the elderly. I think everyone knows in some way that for the next couple of decades or so, it’s going to take more and more people, and more and more money from somewhere to provide decent care and support for the aging population. A lot of us who have disabilities have been refining and perfecting this for years already. We’ve identified quite a few things that work really well … like being able to hire your own personal care aides for help in your home … and a number of models that we really don’t like … such as nursing homes and group homes. So, there’s no shortage of ideas and warning flags available. Also, it would seem to be a natural idea to pair the Long Term Care need with the pressing issue of Long Term Unemployment. One of these days, a President is going to have to bring this up and start getting people used to talking about it intelligently. It would have been great this year, but I wasn’t expecting it.

The whole experience underscored, I think, that while there are certainly distinct and important “Disability Policies” in need of creativity and debate, a lot of our most important issue are embedded in so-called “mainstream” issues. If so, then it’s up to us to bring them up, rather than waiting with our arms folded hoping that politicians will finally, one day, remember to mention them.

Plus, I’d rather have a meaty speech with hidden, but very real potential connections to disability concerns, than have a superficial speech sprinkled with pro-forma mentions of disabled people and what non-disabled people think we probably care about.

P.S.: Lead On Update has a really nice summary of the #SOTU4PWDS Live Tweeting event, including lists of actual Tweets. One of them is mine! Conveys the flavor and tone of the conversation.

Tuesday, January 28, 2014

Jillian Mercado On "Today"

The first quarter of this Today Show video made me gag a little, only because even Matt Lauer can’t seem to resist cliches like “inspirational” and not letting disabilities “slow her down”. The rest of the segment, though, was fantastic. Two specific points made me cheer:

1. Matt Lauer bringing up how Mercado’s work connects with young people who struggle with “body image”. That’s not a radical idea to those of us with disabilities, but it’s a very astute observation to come from a non-disabled interviewer.

2. Jillian Mercado saying, “It gets better”. She means for people with disabilities, and any youth with body image issues. But, whether she intended it or not, it was brilliant to use a phrase more familiar in the context of gay, lesbian, and transgender youth. In a lot of ways, our respective issues are quite similar, and the sentiment just as applicable.

Overall, the segment was specific, not generic, which is what I think we want most from stories about disabled people.

Oh, and Jillian looked amazing!

State Of The Union & People with Disabilities

Close-up photo of Presidential speaking podium with two microphones and the seal of the President
I’m looking forward to trying to Live Tweet the State Of The Union Address, but I’m not sure what we can say about the speech from a disability standpoint.

One approach is to listen for specific mentions of disability concerns and policy proposals in the speech. This will almost surely lead to disappointment and discussion of how we can get the President to elevate disability policy to the top tier of national prominence. If we are very lucky, it might lead to a 30-second mention of some specific disability-related policy proposal, maybe an Executive Order upping the percentage of disabled people to be hired for Federal jobs … something valuable, but very specific, incremental, and narrow.

The other way to go is to listen to the speech and sort of brainstorm ideas for how the proposals could be adapted to further our longstanding disability policy goals. Here are some possible examples I may be thinking about tonight:

Infrastructure / Stimulus Spending - 
Home modification, vehicle purchase and modification, assistive technology, business / public space accessibility. If you’re going to spend money to goose the economy, there are worse things to spend it on than helping people with disabilities bust those expensive barriers in our lives, like lack of transportation, and poorly accessible houses and apartments. I would love to see a really credible study of how much it would cost to meet these needs for the disabled people who have them. My guess is that it would be a lot, but probably less than an aircraft carrier, or a high-speed rail network.

Unemployment - 
Improved or added tax credits for hiring long-term unemployed and people with disabilities. Improvements in work incentive benefits rules that would enable more disabled people to take on part-time or trial employment. These aren’t new ideas … we just need more of them.

Long Term Care and Unemployment -
Develop a creative way to link the need for individual, home-based personal care for disabled people (including the elderly), and people who desperately need jobs. Develop a federal-level mechanism for Consumer Directed Personal Assistance, in which disabled people who need home care (or their families) can directly hire and supervise their own personal care aides. The goal would be to ensure that the model is available in every state. I would be overjoyed if the President did nothing else but point out the possible connection between the growing need for long term care, and the millions of people who are out of work.

Small Business - 
Increased or additional tax credits or deductions for businesses that make accessibility improvements during any tax year. Business accessibility is never going to be a high priority for anyone besides ourselves, but there are hundreds of tax credits and other incentives, why not up the ante towards a worthwhile purpose?

Minimum Wage - 
Repeal laws that allow sheltered workshop programs to pay disabled people less than minimum wage. Change vocational rehabilitation regulations so that placement in sheltered workshops or segregated work crews can never be deemed a successful "case closure”. This is a matter of plain justice that might actually resonate for the average voter, even if they aren’t familiar with disability issues.

Education -
Explore ways to make higher education funding more flexible, and life-long. For disabled people, this could be very helpful by allowing us to pursue higher education on an "as needed" basis, and on more flexible schedules other than typical four to six year cycles.

What disability-related policy changes or initiatives would you like to see?

Monday, January 27, 2014

Live Tweeting the State Of The Union

I'm not exactly sure how this will work, but I’m signed up to join in Live Tweeting the President’s State Of The Union address tomorrow night. It’s using an application called #TWUBS, and you can sign up here for the SOTU Live Tweeting, and use the hashtag, #SOTU4PWDs.

Wisdom Of The Day

"A Not To Do List For The Chronically Ill", from the Spoonie Strong Tumblr blog.

An Opportunity In "Project X"?

Last week I mentioned that one of my favorite journalists, Ezra Klein of the Washington Post Wonkblog, was leaving for some new venture. It turns out tha he’s not the only policy-minded journalist / blogger joining the project. Matthew Yglesias of, Dylan Matthews also of Wonkblog, and possibly others will be starting something they are calling “Project X”, an online news site focusing on providing context and background “explainers” for current issues in the news.
“Today, we are better than ever at telling people what's happening, but not nearly good enough at giving them the crucial contextual information necessary to understand what's happened. We treat the emphasis on the newness of information as an important virtue rather than a painful compromise."
"The news business, however, is just a subset of the informing-our-audience business  —  and that's the business we aim to be in. Our mission is to create a site that's as good at explaining the world as it is at reporting on it.”
Their announcement includes a link to an open online application for possible contributors who are knowledgeable and enthusiastic about specific topics.

I can’t help thinking that there is a crying need for context, history, and explanation for disability-related news stories and policy discussions. How many people casually read about, say, nursing home fires, cognitively impaired people dying in pointless scuffles with police, sub-minimum wage at sheltered workshops, long term care and “entitlements”, health care reform, etc., without any real understanding of what’s important about these happenings? How many disability stories play out as simple human tragedy or triumph, with important policy implications entirely missing?

Maybe some disability bloggers will step up?

Beige Flags

Beige colored waving flag
Not every instance of ableism makes me see red. Some things just annoy me, bore me, or make me slightly peeved. I’ve come to think of these as my “Beige Flags”. Here are three examples:

Being called “Inspirational” ...

First of all, I don’t often get called “inspirational”. Mostly I read about others being termed “inspirational”, in print. Obviously, it’s a tired cliché, something people say when they want to be vaguely positive but don’t know what else to say. It’s also problematic, with a definite underdone of low expectations and prejudice. But, I’m really unsure of just how common the “inspirational” thing is in real life.

The other thing that sort of moderates my feelings is that I sometimes think that maybe inspiring other people isn’t the worst thing in the world, even if that inspiration is built on a flimsy premise. Also, I sometimes think that maybe it’s not my place to police other peoples’ feelings. It’s important to call out prejudice, but at the same time, I don’t like being the sort of person who constantly goes around telling people they’re “doing it wrong”. If “inspiration” is what someone feels, why should I contradict them? Maybe it’s better to build on this starting point and just roll my eyes in private.

Unsolicited help …

Occasionally I’m reminded of how nervous some non-disabled are about social interactions with disabled people. Often this manifests in a fear that if they offer assistance, they’ll be scolded or shamed in some way. Apparently, we’re all really touchy about unsolicited help. I mean, we aren’t, really. We mainly get angry if we are touched or physically moved without our consent or direction. Being asked if we want help is quite a different matter, at least to me. Sometimes, even just being asked annoys me a bit, but it doesn’t make me angry. Again, it’s a Beige Flag for me, not a Red Flag. So to non-disabledp people wondering if it’s okay to offer help … just relax. If you want to offer, offer. As long as you respect our answers, you’re fine.

Sex ...

I am truly ambivalent about the whole subject of sex and disability. From my own perspective, the problem is twofold. For starters, I am disadvantaged by society’s dominant definitions of physical attractiveness. In general, I am not likely to be immediately, visually attractive to most women. I’m not saying this is absolute; it’s a matter of probability. Connected with this, but distinct from it, my own self-image has throughout my life been shaped by my perception of what other people find attractive and not attractive. As a result, I have self-limited myself and probably sent all sorts of discouraging signals when it comes to sexuality.

What I don’t really buy is the idea that there are these powerful taboos against people with disabilities having sex. I just don’t see it. I think there’s a lot of factual ignorance, and a sort absence of thought in which most non-disabled people simply never think of disabled people thinking about sex. But, I don’t hear much in the way of moral disapproval or disgust. The closest I’ve heard is people who have strong opinions about the wisdom of disabled people having kids, which I kind of think is a separate kind of question.

Still, I could get really resentful about all of this. It could be a Red Flag topic for me. What makes it less so is my feeling that a lot of the apparent barriers for me are internal and my own responsibility. That, and my strong belief that nobody has a “right” to sex that in any way supercedes individual likes, dislikes, and consent. I think it’s great and important to raise awareness … through discussion and photo projects for instance … of sexuality and disability. Maybe over time more people will have more open minds, and conceptions of beauty and attractiveness will become broader and more inclusive. But, on a person to person level, I can’t act like my own sex life or lack of it is some sort of political thing. Other peoples’ lack of imagination doesn’t entitle me to any sort of consideration, other than what I’m willing and able to generate for myself.

In short, though I generally believe that “the personal is the political”, I really feel that when it comes to sex and disabled people, the issue is a lot more personal than it is political.

As always, I welcome contrary opinions and other examples, in the comments.

Sunday, January 26, 2014

"Much Loved" Teddy

"We love these images from Mark Nixon’s work called Much Loved, showcasing the images and stories of what we all had when we were young, that teddy that was always there for you, your favourite one that got dragged round the garden, pulled, pushed, stuffed, thrown and much more, but still has a place at home 20, 30, 40, 70 years later.”
Well-worn, torn, patched old teddy bear
This is my Teddy Bear. Obviously, it looked like an actual teddy bear at some point, but kind of lost molecular cohesion due to constant companionship. Thinking back, it would probably be fair to say that Teddy here played a very large role in getting me through my first 10 years or so of surgery and other trials.

My favorite story about this bear is that when I was somewhere between 1 and 2 years old, and my parents took me for medical tests in Boston, Teddy got left behind in Logan Airport. Someone found him, and put it together with my parents’ (likely desperate) phone calls to Lost & Found. They ended up putting him in a taxi cab that drove him to the hotel where we were staying. That’s probably the last time I was unsure of where Teddy was. Even now, though I haven’t really played with him or cuddled with him in decades, I can always tell you where he is.

"I'm Anemic Royalty"

One of my earliest posts on this blog asked the question, “Are there any good disability songs?" I still think there are very, very few popular songs that speak to the disability experience, but just now my iPhone reminded me of one that I think qualifies: “Pennyroyal Tea” by Nirvana.

It might be more precise to say that this is a “spoonie” song. If it is “about” anything, its about feeling sick, weak, and depressed all the time, experiences we know were familiar to Kurt Cobain. It’s not an uplifting or even particularly empowering song, unless we can agree that recognition and commiseration can be empowering. I certainly think they are, in limited doses. Plus, even the most optimistic and functional among us with disabilities can relate once in awhile to the feelings expressed here, both by the lyrics and by Cobain’s classic “Unplugged” performance.

P.S.: It's great seeing Dave Grohl looking so young and fresh-faced! I mean, it's not like he's an old man or anything now, but here he's really such a kid. Seeing him in this video also underscores how his basically sunny disposition both contrasted and mixed perfectly with Cobain's dour personality.

Weekly Wrap-Up

Disability Thinking: Weekly Blog Wrap-Up
Sunday, January 19, 2013
Monday, January 20, 2013
Tuesday, January 21, 2013
Wednesday, January 22, 2014
Thursday, January 23, 2014
Friday, January 24, 2014
Saturday, January 25, 2014

Saturday, January 25, 2014

Book Club: "The Man He Became", Part One: "Virus and Host"

James Tobin - Simon & Schuster, 2013

Part One: "Virus and Host"

“The Man He Became” is fascinating and emotionally engaging. I thought I would learn things I didn’t know before. I sensed that I would agree with some of Tobin’s new conclusions. What I didn’t expect was to feel so personally close to Franklin Roosevelt as he went through his bout with Polio. And I didn’t expect to recognize so many of the social habits, irritations, and forces that FDR had to contend with. The way the story is shaping up, it really does seem like FDR was a forerunner of today’s “social model” of disability, whether or not he knew it or intended to be.

Basic facts and important ideas:

- Franklin Roosevelt was an American aristocrat, a prominent politician, and a definite, if somewhat distant, Presidential hopeful at the time he contracted Polio. He had already served as Assistant Secretary of the Navy through WWI, and run for Vice-President in 1920. Polio was a setback, and could easily have been a career-ender. Polio changed him, but it did not form him from the start as a disability from birth or early childhood does.

- Roosevelt was an enormously privileged man, with a social status and financial resources that few others ever have to help them deal with the onset of severe disability. This proves points in both directions. It puts a bit of a limit on how much we can extrapolate from Roosevelt’s accomplishments to others with disabilities, because most people don’t have nearly the advantages he did. On the other hand, his social status and wealth actually did very little to change the fundamental experience of Polio for him. As Tobin suggests, Roosevelt’s wealth and status may not have even bought him the best medical care, since excellent physicians disagreed about just what to do about Polio at the time. His status certainly didn’t lessen his pain or fear.

- We see the beginnings of what some later historians, such as Hugh Gregory Gallagher, would call his “splendid deception”. In a sense, it started when Howe orchestrated Franklin's departure from Maine back to New York, stage managing things so that reporters never saw him being wheeled, lifted, or transferred, but only saw him settled on the train.

- Despite these very conscious measures of secrecy and misdirection, Tobin asserts that it is far too simple, and essentially inaccurate, to say that Roosevelt “hid” or “covered up” his disability. There was no grand conspiracy, and it wouldn’t have worked if there hand been one. Everyone knew he was disabled in some way, but most people didn’t know the details or extent. Roosevelt and his people used this ambiguity however they could to either obscure or redefine the aspects Roosevelt’s disability they couldn’t hide. Tobin says that when Roosevelt walked to the podium to take the Oath of Office, he wasn’t trying to fool anyone. He was rather making a statement of strength. He never said, “I’m not disabled." He said, instead, “I am strong and capable.”

- If Roosevelt’s people believed, as he did, that he had a good chance to recover, then hiding or obscuring his problem wasn't necessarily the start of a long-term, elaborate deception. They would have thought of it as a short-term measure to get through the crisis as best they could. The permanence of disability sank in over a very long period, so there was probably no single moment of decision, just a series of improvisations that never completely ended. Tobin says that this helped FDR to shape perceptions of his disability as he felt the need, even if there was never a grand plan or strategy.

- Roosevelt was an unusually private, uncommunicative man, even for his day in which reticence was the default character trait of the upper crust. People weren’t in the habit of unburdening their souls to their friends, even spouses, much less the general public. But lots of people kept diaries, wrote long letters to friends, and if successful in life, wrote memoirs. Roosevelt did none of those things, which is astounding given how important he became to American history. We may know less about Franklin Roosevelt’s inner thoughts than we do about any of our Presidents. It seems to me that this had both good and bad implications for how he dealt with Polio and lifelong disability.

- While he was private about his inner self, on the outside Roosevelt was gregarious, both before, and, crucially, after Polio. The way Tobin describes him, Roosevelt reminds me of Bill Clinton … a man who could charm just about anyone, someone who people liked to be around. He was, in a sense, a contradiction … a private extrovert. Is this one of the keys to his handling of disability?

- In Part One of “The Man He Became”, we get to know two of Roosevelt’s most extraordinary allies … his wife Eleanor and his political aide Louis Howe … both of whom made crucial decisions and adjustments to adapt their original objectives to Roosevelt’s new circumstances. Each, in their own way, went “all in” to stick with Roosevelt, without being at all sure of what that would mean or what the goal would be.

- Tobin says that Louis Howe was the first person in Roosevelt’s circle to wonder if he had contracted Polio. He, himself, was a sickly person who was very familiar with doctors, not overly impressed with them, and not intimidated by their reputations. He put Franklin’s uncle, Fred Delano, on the case of finding a doctor with Polio experience. 

- In the weeks after his diagnosis, Eleanor and Louis Howe didn’t tell Franklin the truth about what they’d been told of his condition. This fits my perception of how much more common it was “in the old days” for people to hide painful medical facts from patients. Except I always thought this was just for children and women. Maybe it wasn’t. After all, with the possible exception of his mother, Franklin was clearly “the boss” of the family and of his own developing business / political apparatus. It’s amazing to me that they’d keep anything from him, for any length of time. Here is a man who had already run for Vice President, yet they didn’t think it appropriate to be completely honest with him about his own medical condition.

- We also see how the very definition and understanding of disability given to Roosevelt and his family was complex and ambiguous from the start. Dr. Lovett said, "Disability is not to be feared." Tobin says that he likely meant that Roosevelt would't be bedridden for life, that, in fact, disability might happen, but would not be all-encompassing. He suggests that a doctor familiar with Polio at that time had a generally more positive view of life with the resulting disabilities. If so, that, too would be more progressive a view than I would have given credit for. In any case, the Roosevelts may have thought he meant that disability wouldn't happen. 

- Finally, we get a sympathetic look at the sort of old-fashioned “hard work and perseverance” approach to disability that disabled people today take with a grain of salt. To Howe, Lovett pitched it as dependent on courage and will. Maybe that helps us see why the "courage and perseverance" ideas are so powerful to this day. Medicine then really wasn't that much more of a factor than a person's will and determination. Generations got used to attributing good outcomes to positive attitudes. "Courage and good temper" ... realism, hard work, and good cheer … were values passed to Franklin from his relatives, especially his Uncle Delano, on how a man ought to deal with illness and loss.

- Part One ends with Roosevelt back home in New York City. He still believes that he will fully recover … by which he still means that he will walk without even a cane some day. Howeverm he has begun to sort through the various rehabilitation approaches being offered to him by experts, making tentative decisions of his own based on his own experience and instinct. Tobin suggests, too, that Roosevelt may have begun to doubt what his doctors are telling him, developing a concept of cure that is something less than total or literal. In small but important ways, Roosevelt is becoming a more empowered patient.

My reaction so far:

- I found myself emotionally moved by the description of Roosevelt's pain, and gradual discovery of his creeping paralysis, as he suffered his bout with Polio. Tobin’s descriptions made me feel very empathetic. I imagine lots of the bloggers I read today might feel the same way, especially those with chronic illness, if they read about how, “Even the weight of cotton sheets could be intolerable” to Roosevelt’s legs.

- I was particularly struck by the description of his hard-bitten political fixer, Louis Howe, first massaging his legs with Eleanor, then later reading aloud to him to pass the time. It’s hard to imagine a major politician today being treated this tenderly and loyally by a paid political operative.

- Wouldn’t it be amazing to face ongoing disability hassles with a Louis Howe on your “team"? Some of us do, in a way. We have great parents, spouses, brothers or sisters, best friends. But even these aren’t quite the same thing as what Howe was for Roosevelt … an ultra-competent, ruthlessly practical, loyal but also self-interested agent invested in you, yes, but more than you, your project … your goal. I think that a friend like that may be something a lot of us with disabilities are missing, without really realizing it.

Questions For Discussion:

- What, if anything, did you learn in school about FDR’s Polio and disability?

- How does Roosevelt’s privileged background affect your feelings about him as a disabled role model?

- At what point do you think Roosevelt consciously knew he would probably never walk “normally” again? Or, do you think he never gave up on that goal?

- Do you think that Roosevelt’s “old fashioned”, WASPY-y stoicism helped him or hindered him? Can we draw helpful lessons from his attitude? Or, is it a completely individual thing?

Please feel free to share you thoughts in the comments below, whether you are reading the book with me or not. Though, if you aren't reading "The Man He Became", I highly recommend it.

Nursing Homes Staff - January 25, 2014

I disagree with the whole concept of nursing homes and “facilities” as a way to help people who “can’t do for themselves”. However, if you’re going to to take on the task, for God’s sake do it properly. You take people who have difficulty fending for themselves, you put them into a place where they are even more dependent, and then when things go to Hell, as they do, it all turns out much worse. Exactly how is this so much better than people falling now and then and breaking a hip, in their own homes?

Photo Of The Day

Do click through to see more photos, and a beautiful writeup from the model.

Friday, January 24, 2014

Photo Of The Day

Photo of an Asian young woman wearing glasses, a black and white striped shirt, sitting in a wheelchair, taking selfie with a smartphone
From the Pierce Of The Veil Tumblr blog, via Wheelchair Problems.

Book Club Reminder

Tomorrow will be the first installment of my “Book Club”, starting with “The Man He Became”, by James Tobin, a new biography of Franklin Delano Roosevelt focusing on his experience of polio and how it related to his rise to the Presidency. I’ll be giving my first impressions of Part One: Virus and Host. After I have my say, please feel fee to comment, especially if you have read or are reading the book as well. But don’t feel you have to be reading to contribute.

I’ve almost finished the whole book, even though I initially figured I’d tackle one part at a time. It’s that good. I’ll save most of my thoughts for tomorrow, but just say now that I found myself very personally and emotionally connected to Roosevelt as Tobin described the progress of his polio, and his reactions to it. Disability really is a ruthless equalizer. Roosevelt was about as privileged a person as could be found in this country in the 1920s. He was still privileged after contracting polio, but the practical affects were just as gritty and inescapable as they were for anyone, regardless of income or social status. Roosevelt’s wealth gave him tools and supports, but they did virtually nothing to the disease itself, nor even much to his mindset, I think.

Read it. Listen to it. Absorb the book any way you can.

Thursday, January 23, 2014

Ed Roberts

Photo of Ed Roberts, posted with a worn-soled sneaker
In recognition of Ed Roberts’ birthday …

From the CP Shoes Tumblr blog.

I’m going to go ahead and embed this YouTube of the “60 Minutes” interview with Ed Roberts, one of the original leaders of the Disability Rights Movement and founder of the first Independent Living Center.

Don't Wait, Don't Hide

quotation marks icon
"I used to read about  certain countries in Europe after they threw bananas at some black soccer player, and say to myself, "I'll never go there.” But I am a little older now, and I am more confirmed in the fact of this one-shot life. And knowing that this is not a dress rehearsal, and knowing, too, that questions are burning in me, and feeling that my whole purpose here is to observe, I simply don't much care anymore. I am past the age where one can afford to sit around waiting for the world to autoliberate from its various hatreds. And I have had my hatreds too. Like most humans.” -- Ta-Nehisi Coates, The Atlantic.
Coates here is writing about no longer letting the possibility of prejudice deter him from exploring and engaging with the world. Mostly he's talking about racial and ethnic prejudice, but his words speak to me as a disabled person, too. If we rely on people to "autoliberate" themselves from ableism before we'll engage with them, we'll have a very long, boring wait. We should definitely speak out about ableism, but we should also try not to hide from it.

Wednesday, January 22, 2014

A Bit Of Mainstream News News

I usually don’t bother posting about non-disability-related topics, but something is about to happen that I think should matter for people with a higher than average stake in health care should care about. Ezra Klein is leaving the Washington Post. Klein has been one of the very few truly “honest brokers” of information and perspective on the Affordable Care Act (Obamacare) since before the law even passed. As others are saying all over the place, Ezra’s departure is a loss to the Post.

Fortunately, the other honest broker on the ACA, Sara Kliff, is as far as I know NOT leaving the Post, so we’ll still be able to read her outstanding coverage of all things health care at the Washington Post Wonkblog.

"Bless Your Heart"

Alison Piepmeier, Charleston City Paper - January 15, 2014

This is yet another perspective on how parents of kids with disabilities speak about their children, and how others perceive them as parents. I think calling the sentimental language “The Bless Your Heart Phenomenon” is phenomenally great. The writer suggests there’s a regional cultural element at work, which I honestly had never considered before. It raises a sort of obvious question. Which is better, sweetness that may mask more negative thoughts, or rudeness that may be more honest? I would think it would depend a lot on the kind of day you’re having.

Red Flags ... Followup

I feel like I should add a note about one of the "Disability Red Flags" I wrote about yesterday. I do realize that what I regard as a kind of sickening sentimentality that some families seem to have about their "special needs" / disabled children doesn't necessarily reflect a bad or alarming parenting approach. Some people are just sentimental, and some people are not. I am not. It's not my thing. Really not my thing. For others, the sweet, spiritually-infused labels, nicknames, and ways of speaking are expressions of devotion, affection, and love. That's fine.

All I would ask, as a former disabled child, now a disabled adult, is that parents never forget that their child is a person ... not a symbol, not a test, not a delivery system for improvement in their character, not a challenge for them to overcome. Your child is a person, with his or her own thoughts, ideas, opinions, wishes, dreams, and potential. And one of the best things you can do for a child with a disability is help others to see them as a person, too, by how you speak about them.

End of sermon!

Tuesday, January 21, 2014

Book Club: "The Man He Became"

Book cover of "The Man He Became", by James Tobin, with photo of FDR as a young man
The Man He Became: How FDR Defied Polio to Win the Presidency
James Tobin - Simon & Schuster, 2013

I have started listening to the audiobook of “The Man He Became”, by James Tobin, a new book about Franklin D. Roosevelt’s experience of disability. Specifically, the book chronicles the onset of Roosevelt’s polio in 1921, his rehabilitation … both medically and politically … and his rise to being elected President in 1932. From what I have read about the book, Tobin refutes a lot of popular ideas about FDR’s disability and how he managed peoples’ perceptions of it.

I will write a review / discussion of each of the book’s three parts, on successive Saturdays:

Saturday, January 25 - Part One: Virus and Host
Saturday, February 1 - Part Two: He’s Through
Saturday, February 8 - Part Three: Resurrection

If anyone has read the book, or would like to read along with me, feel free to comment. You can also email me ahead of time if you like so I’ll know whether to expect other people to join the discussion.

If this first "book club" discussion works out, we can move on to other disability-related books, and I'd be open to suggestions for other books to read and discuss.

Ad Presence

Jillian Mercado in a Diesel ad campaign. You can learn more about Jillian at her blog, and from the video she made and I posted back in December.

From the manufactured1987 Tumblr blog.

3 Disability "Red Flags"

These aren’t quite “triggers”. They don’t provoke traumatic memories for me. They are things related to disability that make me angry or just rub me the wrong way, and more than just minor, everyday irritations.

This is probably going to be the first installment in a series …

image of a red flag1. Parents who sentimentalize their disabled / “special needs” children. Of course, lots of parents dote on their children, especially when they’re really young and adorable. I’m talking about parents who speak and write about children with disabilities in one or both of two specific ways:

- Their tone of voice and choice of words are what we expect in talking about kids 5 and younger, but applied to “kids” of all ages, including adults, who are disabled.

- They refer to their children in spiritual, quasi-religious terms. They are “angels”, “blessings”, or “miracle babies”.

This is definitely not all parents of kids with disabilities, but this tone is pretty prominent in the dialogs from parents that make it to mainstream media and even Internet discussions … and it makes me squirm.

2. When professionals who serve people with cognitive impairments try to refute arguments about freedom and autonomy by explaining that we just don’t understand all the problems they have to deal with, because we have physical disabilities. The implication is that our standards of human rights and dignity are not applicable for people with cognitive impairments / intellectual disabilities. This usually happens when the professionals are trying to justify policies and practices that I think they know on some level are outdated, cruel, and wrong.

3. Whenever people with one kind of disabilities either explicitly or covertly minimize or disparage the concerns of people with other kinds of disabilities. I’ve seen this happen in impatience over the details of specific accommodations in meetings, in questioning the validity of certain kinds of “gray area” disabilities, and in the cultural / experiential differences between people born with disabilities and those who became disabled later in life. I’ve been guilty of all of these things, by the way, but they still bother me a lot.

What are your personal Disability Red Flags?