Photo Of The Day

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

'Dead' man living: Disabled teen-turned-Internet star 'lives by inspiring others’

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

‘You work until you die:’ Inside America’s fragmented safety net for the disabled

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!

Journalistic Disability Clichés

"How Not To Write About Disabled Folks."

From the Ramblings Tumblr blog, via via too brain fogged for this.

#SOTU4PWDS

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.

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.

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

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?

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 Slate.com, 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

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.

"Much Loved" Teddy

Mark Nixon’s “Much Loved"

"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.”

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.