From the Amputee OT Facebook page.
Saturday, December 7, 2013
Friday, December 6, 2013
Revisiting Rookie
Anyway, that’s why this post by someone I follow on Tumblr and Twitter caught my eye. I am so glad Rookie did a story / photo exhibit, on youth with disabilities. I hope it isn’t the last one. Here’s a link directly to the article, if that’s easier.
Rookie, Lauren Poor and Maddy Ruvolo - December 6, 2013
In case you missed it, here’s the TED Talk:
… And here’s some of what I wrote about it:
In her presentation here, Gevinson talks about the difficulty of finding strong female characters in popular culture. You can find strong female characters in movies and on TV, their strengths tend to be defined by singular, narrow characteristics:
"They're not strong characters who happen to be female. They're completely flat and they're basically cardboard characters. The problem with this is that then people expect women to be that easy to understand, and women are mad at themselves for not being that simple. When in actuality, women are complicated, women are multifaceted. Not because women are crazy, but because people are crazy, and women happen to be people.”
Now try this. Replace the words I've colored red with "people with disabilities", or your favorite "disability" term, and these observations are just as true. The same holds for lots of the articles and blog posts on Rookie about being female and a teenager.
After reading the New Yorker article, and then exploring the Rookie website, I came to what should have been an obvious thought. Disability is at least as varied, vexing, and misunderstood as being a teenage girl. Why not apply the techniques, models, and attitude of Rookie to the disability experience? Start a blog on the topic of disability, and expand it into an online magazine / community by and for people with disabilities. Most importantly, give it personality and a point of view. Make it a site people with disabilities want to visit.
So, what do you all think? How can we get our own version of Rookie going, and can we sustain it?
So, what do you all think? How can we get our own version of Rookie going, and can we sustain it?
FDR Reconsidered
Fresh Air, National Public Radio - November 25, 2013 — via Media dis&dat
Late last month, Fresh Air’s Dave Davies interviewed James Tobin, author of “The Man He Became: How FDR Defied Polio to Win the Presidency”. Tobin challenges the widely held assumption that President Franklin Roosevelt basically hid the physical disability that resulted from polio. He asserts that while FDR worked hard to prove his restored good health, and to make people feel comfortable with him so they would overlook his disability, most Americans knew very well that he couldn’t walk or stand unaided. Based on the interview, (I haven’t read the book yet), it seems like Tobin has presented by far the most historically accurate and sophisticated account of FDR’s disability.
For those of us with disabilities, especially the ones who struggle with the balance between medical aspects and social aspects of our disabilities, the account depicts a man who really did balance the many conflicting ideas, priorities, and feelings that war with each other in disabled people to this day. He remained committed to the hope of a cure, yet he carefully planned and calibrated a return to his political career. He made it his responsibility to make non-disabled people feel comfortable with him, yet there’s no hint or evidence that he felt any sort of shame about his disability. And Tobin tells of at least two times when Roosevelt consciously used his disability to better understand others with disabilities, and to inform political policy. He even tells how political opponents briefly tried to say that FDR's disability was actually from syphilis, not polio … perhaps an early example of the, “You’re faking or misrepresenting your disability!” meme that seems to be such a thing nowadays.
As for the notion that he hid his disability, or that others helped him hide it, that never made much sense to me. I do think that there was a different standard for openness about personal issues back then, which means that he didn’t go out of his way to talk about his disability, or to share his feelings about it. It would have been thought impolite or impertinent for others to focus on his impairments as well. But, that’s not the same thing as deliberately concealing a disability … trying to prevent people from knowing about it. Which, by the way, puts a very different spin on the MS concealment storyline on “The West Wing”, which relied quite a bit on everyone’s understanding on the show that FDR would never have been able to be elected from a wheelchair with modern-day television and journalistic standards.
This interview also made me reflect again on the fact that my mother … who grew up during FDR’s Presidency … told me many times that “everyone knew” FDR couldn’t walk. They didn’t know all of the details, but the basic fact was understood.
The program is well worth a listen, and now I’m off to buy the book … well, the audiobook.
Thursday, December 5, 2013
What Nelson Mandela Means To Us
I came of age in that period of just a few years when the Cold War ended, and Apartheid in South Africa ended. Mikhail Gorbachev did his part, in a mostly technocratic way, while Nelson Mandela had a more emotional appeal.
Nelson Mandela was one of just a few people who can truly be said to have played a key role in history. What he symbolizes to me is the idea that the way things are in the world isn't necessarily the way they have to be. Cold Wars don’t have to go on indefinitely. Totalitarian regimes that wield dictatorial power don’t have the power to sustain themselves forever. The players on the world’s chessboard in your childhood may be different when you are an adult. Not just in different positions, but with entirely new pieces. This is both liberating and frightening.
I don’t think it’s too much of a stretch to say that it’s an important idea for disabled people. We would appear to be prisoners of “the way things are”; our bodies or minds impose difficulties that are mostly beyond our control. Yet, if we can identify things that are under our control and make the most of them, then we don’t have to erase our problems in order to triumph. Racial animosity is a reality of South Africa that nobody could undo. But Apartheid as a policy could be changed, and that was enough to help South Africa start to evolve away from racism. We can’t become un-disabled, but we can do other things that make our disabilities more manageable, and our lives excellent.
There's another angle, too worth remembering tonight. A big part of the philosophical justification for Apartheid was a very particular concept of "the way things are" ... that black people were inferior and in need of supervision from white people if they were to enjoy just the scraps of modernity. While plenty of Apartheid supporters had more selfish motives, no doubt that many really believed, on some level, that the restrictions of Apartheid were for black peoples' own good.
Anyone who has lived long enough with significant disabilities can, I'm sure, understand that idea from the opposite end. One of the things Nelson Mandela did was to show that freedom and liberty are worth the apparent risks. Risks that are, in any case, probably overblown.
Rest in peace, Nelson Mandela.
Job Discrimination
Jennifer Lawson, The Reporter - December 4, 2013
Holy shit. I think it’s time for another training bliz on the Americans with Disabilities Act. Apparently, people are so ignorant of the law that they don’t even know enough to camouflage their discrimination with other “reasons”. I’ll bet that Dominos manager had literally no idea there was any such law against deliberate discrimination against a disabled person. I’m no fan of Dominos, but I also bet that the corporate office will make it a priority to teach their managers otherwise. After all, you can achieve a lot of responsibility at a very young age in a place like a Dominos Pizza, which means a high risk of rather stunning knowledge gaps … like never having heard of disability rights laws.
Wednesday, December 4, 2013
What A Coincidence!
So, I just get done emotionally processing that mannequin video, and decide to click and see what Smart Ass Cripple is up to. And his post this week is about body image! I’ve got tears in my eyes again, on the same topic, but this time from laughing.
About Pop Culture
Slightly off topic, but related to why we might bother thinking about how disability is depicted in popular culture … this series of Tweets by Alyssa Rosenberg of Think Progress:
It's always very strange to me when people suggest that deep emotional investment in culture is dumb.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
Cultural production employs tons of people.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
Culture shapes what we perceive as normal at home, from comedy heckling to police brutality.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
And cultural exports have a huge impact on how audiences abroad see the United States.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
Fiction can be a tremendously powerful refuge. Music can be as mood-altering as a drug.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
There's a reason Rose Schneiderman called for bread *and* roses: beauty gives people's lives an awful lot of meaning.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
And just because people find beauty, or meaning, or refuge, or uplift in a place where you can't see it doesn't mean it's not there.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
Okay, fine, a couple more thoughts. Taking seriously people's investment in a cultural form doesn't mean blindly endorsing it.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
Being dismissive of, say, superhero movies is a way to avoid engaging with their content and the reasons people find it compelling.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
It's absolutely uncomfortable when a dominant cultural form isn't one you resonate with. But the gap is a place to explore, not ignore.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
As a woman, I don't have the luxury of pretending that the gap between my body and presentation and the ones I see on screen doesn't exist.
— Alyssa Rosenberg (@AlyssaRosenberg) December 4, 2013
Mannequins
I know that “There’s no crying in baseball!”, but is there crying in Starbucks?
I’ve been seeing this video all day, embedded in other people’s blogs, but haven’t watched it until now, sitting here in my local Starbucks. Within 30 seconds of the video starting, I was genuinely concerned that I would start crying.
This hit me very, very hard, but in the best way. I think the best moment is seeing the woman with the curved spine literally hugging her mannequin, and later looking at it through the shop window with such love and happiness. I guess it’s not surprising I’d identify with her most, since her disability is so similar to mine. I also appreciated the apparently total respect of the artists and craftspeople who built the mannequins.
The whole thing is just fantastic.
Click here to see some of the posts where I found this, with other peoples' comments.
Click here to see some of the posts where I found this, with other peoples' comments.
Brain Dump: Disability Language
I read a lot of blog and Tumblr posts about disability language and terminology. You can read a conversation I’ve followed in the last day that’s pretty typical of type of arguments that seem to get going whenever someone asks about what’s the “right” or “wrong” words to use.
It’s a mess of a topic that I wish I could settle in my mind. Instead of trying to come up with my own Grand Unified Theory of Disability Language, I’m going to do a kind of “brain dump” of semi-related thoughts on disability language. It’s a start.
- For most of my adult life, I was firmly committed to “person first” language, centered on “person with a disability.” I still think it’s the most technically accurate term, which I think is the right thing to shoot for. I am a person with a disability, (or person with disabilities, plural). The “with” is key. Disability isn’t something I “am”, it’s something I “have”.
- Lately, I’ve found out that a significant number of disability activists reject “person first” language. I think it’s because they feel it minimizes how much they are, in fact, broadly disadvantaged by disability … both the physical or mental conditions and the social identity and discrimination. Even though I'm intrigued by this counter-movement towards identifying as a "disabled person", I still feel like the most accurate way to describe myself is that I'm a "person with a disability.”
- As a writer, I’d very much like to feel comfortable using “disabled” and “disabled person”. “Person with a disability” is cumbersome in writing. I’m starting to use it in blog posts, just to try it on for size.
- I’m also starting to think that maybe we should use both, depending on how things are going for us at any particular time. Most days, I do feel like a "person with a disability." Some days, though, I definitely feel just plain "disabled".
- I've had surprisingly heated discussions with people who insist that any form of "disabled" is negative and stigmatizing, and instead advocate using “differently-abled", "disABLED", or "special needs". To be honest, the heat isn't one way. I find myself getting pretty hostile myself, after my third or fourth attempt to describe "reclaiming" language falls flat.
- The word "cripple" makes a good personality test. One kind of disabled person can easily understand how calling yourself a "cripple" can be cool, bad-ass, or ironic. Others will never be able to hear "cripple" as anything but a wounding insult. It's usually not a decision you come to, it's a function of the kind of personality you have.
- "Differently-abled" comes from the philosophy of disability that says that disability is just another human characteristic, and that it doesn't really matter ... or shouldn't matter. People who favor “differently-abled” will eventually assert that, “Everyone has abilities” or, “Everyone has disabilities”. One reason why some of us reject the term is that we reject this philosophy. Disability doesn't make a person inferior, but it is a significant thing that shouldn't be minimized. "Differently-abled" minimizes our disabilities. Also, not being able to walk and needing to use a wheelchair is simply, fundamentally different practically and socially than having poor eyesight and needing glasses. Of course, lots of people reply to this argument by saying that we should minimize our disabilities, and that not doing so shows that we are somehow wallowing in our situation or using the label as an excuse for not trying to improve ourselves.
- Probably the most common objection to "differently-abled” isn’t philosophical, but rather emotional. It stems from the same revulsion many people feel to "Have a nice day", smiley faces, and other expressions of sentimentality or cuteness. “Differently-abled” seems like it’s trying too hard to whistle into the rain.
- I have heard many disabled people say that "differently-abled" was thought up by well-meaning but misguided non-disabled people. I don't know if this is true, though it sounds plausible. Still, I'm not sure I agree with the implication ... that most disabled people despise “differently-abled". It seems to me there are a lot of disabled people who do buy into "differently-abled”, or other creative spellings. There are certainly many who don't like any form of “disabled”, who associate “disabled” with the worst aspects of their disability experience.
- I've read a few comments from people for whom their choice of terminology is deeply connected to the evolution of their own thinking about their disabilities. Some people embrace "disabled" even harder because they view it as a hard-won embrace of their conditions. Others advocate "differently-abled" and other more "positive" terms because encountering them changed their self-image for the better. So, maybe where you end up on terminology depends a lot on where you started.
That’s about all I’ve got right now. I’ll probably write about disability language again, in hopes of putting the issue to rest in my own mind, and maybe helping to reduce unnecessary misunderstandings and conflicts.
Tuesday, December 3, 2013
Best Protest Idea Ever
Accessibility Pledge
AXS Map has a "pledge" you can sign, as a way to encourage you to assess more businesses and send in your ratings. AbleRoad's main strength is that it piggybacks on Yelp, so it may be easier to find businesses to review. Both sites are worth checking out.
International AXS Map Pledge
International AXS Map Pledge
The key thing is that you have to submit reviews. We all have to submit reviews. If we don't, these programs won't work. It's really easy, too, so there's no excuse for not doing this, especially if you find yourself getting angry about barriers you find. If you've found a barrier, then you have something to report. It's that simple. Of course, the opposite is true. If you find a place that’s fully accessible, that’s useful information as well.
I have taken the AXS Map pledge to submit 15 reviews of places in my area, and again I'll be submitting the results to both AXS Map and AbleRoad. I invite my readers to do likewise!
Monday, December 2, 2013
Guilty Pleasure?
This holiday weekend, I’ve been binge-watching a semi-legendary British comedy from the early 2000s called, “The IT Crowd”. It’s not the greatest British comedy I’ve ever seen, but Chris O’Dowd and Richard Ayoade are hilarious, and the whole thing has this strange undercurrent of the surreal that makes it’s rather obvious jokes a little more memorable.
Last night I saw Season 2, Episode 1, “The Work Outing”, which made me laugh longer and harder than any of the episodes I’ve seen so far … but also confused the hell out of me in how it used disability themes.
I have set up the embedded video to start where the disability stuff starts, when Roy decides to use “the disabled” restroom …
The reason I’m confused is that I’m pretty sure this is an offensive portrayal of disability. On the other hand, I read it as a sly satire of peoples’ sentimental attitudes towards disabled people.
Either that, or the thing made me laugh in spite of myself, and I’m trying to rationalize it.
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