My Gimpy Life
Episode 6 - Day Jobs
Tuesday, February 18, 2014
The Difference Between "Awww" and "Awesome!"
Maggie Freleng, Huffington Post - February 12, 2014
Brittany Talarico, People Magazine - January 28, 2014
Rachel Cohen-Rottenberg, Disability And Representation - February 6, 2014
Both the concept of “Inspiration Porn”, and a parallel interest in rethinking standards of beauty and sexuality are lively topics in the disability community, and starting to gain some attention in the culture at large. So, an apparent contradiction is becoming impossible to ignore. Why do some photos of disabled people make us roll our eyes and gag, while others we blog and reblog because they’re “awesome”?
I have explored this before. For one thing, I still think that captions and slogans make a big difference. A picture without comment allows us to decide for ourselves what it “means”. Captions instruct us to feel a certain way about what’s in the photo, and usually, the caption is sentimental, shallow, or both. Occasionally, a caption will hit that sweet spot where well-meaning and offensive overlap perfectly. As hard as it is for someone to resist sharing their brilliant insights (believe me, I know), captions almost always turn otherwise cool or interesting photos into “Inspiration Porn".
The source of disability photos, and their intended audience matters, too. When a disability photo comes from a non-disabled person, and is aimed mainly at non-disabled viewers, it tends to look like “Inspiration Porn”. When a disability photo is posted by a disabled person, and / or is aimed mainly at other disabled people, it tends to feel different … more “empowering” than “inspiring”.
The exact intended message, (or apparent message) also counts. In “Inspiration Porn”, the message is often something like, “You think your life is hard, look at this person. He has these horrible disabilities yet he’s happy and successful!” This is based on the assumption that disability is always awful, so a person “suffering” from it who looks capable, attractive, and happy must be a remarkable person … someone to emulate. A related theme is that disabled people are assumed to be depressed and depressing, so seeing a happy, attractive disabled person is meant to be a surprise.
Fashion photos with disabled models and photo essays exploring the beauty and sexuality of disabled people also depend on confounding stereotypical expectations. “Awesome” and “empowering” photos are probably, if we are honest, distant cousins to “Inspiration Porn.” Yet, that’s not the effect they have on us, especially those of us with disabilities.
Danielle Sheypuk, the first model in a wheelchair to take part in New York Fashion Week a few weeks ago, (article linked above), says of disabled people being models in the fashion industry, "People with disabilities need to see it. It's a confidence booster.” I don’t know what effect these photos have on non-disabled people. I don’t even care, because I’m too engaged, too proud and moved, too busy rethinking my own body image and standards of what I have always considered attractive. Meanwhile, the Diesel ad featuring Jillian Mercado has been reblogged pretty constantly on my Tumblr Dashboard since the campaign came out. At least some of these same rebloggers have shown in other posts that they hate "Inspiration Porn", so the Mercado pictures obviously don't strike them that way.
These are subtle differences, but important ones. Maybe they're as simple as the difference between "Awww!" and "Awesome!" I’m sure sure we haven’t gotten close to figuring it all out yet.
Meanwhile, back to “Inspiration Porn” …
Rachel Cohen-Rottenberg of the Disability And Representation blog recently posted an hilarious series of reverse-inspiration porn photos, arranged to look exactly like the worst (and most common) Internet-shared disability pictures with “inspirational” captions … except that instead of disabled people, they show “normal” people, and the captions describe “normalcy” exactly the way disability is usually described. Even people who generally fall for “Inspiration Porn” without question will likely see the opposite point if they look at these tongue-in-cheek but very serious posters.
Finally, if anyone out there still questions whether we disabled people are being hypocritical about this … condemning “Inspiration Porn” one minute, posting “awesome” photos of sexy wheelchair users or amputee mountain climbers the next … I fall back on Walt Whitman to explain:
“Do I contradict myself? Very well then, I contradict myself, I am large, I contain multitudes.”
— Walt Whitman, “Song Of Myself"
Monday, February 17, 2014
What Will We Tell The Children?
Orli, Just Breathe - February 11, 2014
When I first saw this blog post, I immediately put it into my “to read” queue, because I’m fascinated by the question of when and how to explain to kids with disabilities about their disabilities.
I think it is one of the most important questions about raising kids with disabilities. In all honesty, it is a very emotional question to me, too. One of the few aspects of disability that has really upset me is when I have met children or youth with disabilities who did not seem to know much about their disabilities. Aside from not being able to explain them to others, I have felt like that lack of knowledge and understanding greatly undermines their self esteem and sense of mastery. So, I feel upset for them, and angry that for whatever reason they have been kept in the dark. Digging even deeper, I think that for me it’s all about the awful fear that people are thinking and talking about you completely differently than how they interact with you personally … sometimes known as being “two-faced”. To the child, it’s “Yay! You’re so awesome honey! Great job!”, while among people “in the know”, it’s “I’m terrified that she’ll never have a job, never live on her own, will always be like this.”
This is a nightmare scenario to me. Like all nightmares, it’s a distorted fear, exaggerated. But also like nightmares, it’s based on reality. For one thing, whether or not parents decide to discuss their child’s disability honestly with them, it won’t be a secret for long. “The world” will inform them, and not gently or thoughtfully. No matter how we process disability as adults, disability isn’t great news. How do you prefer to get bad news, from a random stranger, or worse, a work colleague you dislike, or from someone you love and who loves you? And just to up the stakes even higher, random strangers and semi-hostile acquaintances often don't tell you whatever the bad news is … they just look at you weird and talk about you behind your back.
Obviously, then, I have a bias in favor of disclosure and honesty about disability with disabled kids, and realistically, it’s the parents’ responsibility. Nobody’s going to do it for you, nor should they.
That said, I am not a parent, and I don’t really know much about the subtleties of how to be honest and informative, at different ages, regarding different kinds and degrees of disability. So that pretty much ends this conversation for me, because I feel like I’ve been presumptuous enough towards parents about this question … all but shaming them into taking a step they may not agree with or that they are justifiably afraid of. It is complex, as the blog post above ably demonstrates.
What I will do is say a bit about how the topic of my disability came into my life. To start with, I cannot remember any single moment when I wasn’t aware on some level that I was “different”. I never was told flat out that I had a disability mainly because I don’t think I needed to. Maybe that’s because physical impairments are easier to identify, and more insistent in their interference with everyday life. Mine were, anyway. I’ll make a guess that the first conversation I took part in about my disability probably involved me, my father, and an Orthopedic Surgeon explaining why I needed an operation, or didn’t need one. I do remember a few other, more weighty and disturbing conversations with my father and mother … one or two after graduating from high school, and a couple after graduating from college. These weren’t about my disabilities per se, but variations on what is probably the usual “What are you going to do with your life / Isn’t it time you grew up?” conversations all parents have eventually with their kids. Only I do remember that my disabilities represented lengthy chapters in those discussions. The issue wasn’t whether I knew I had disabilities, it was whether I really had a clue what that actually meant beyond physical inconveniences and unusual health concerns.
No, I don’t feel like anything was hidden from me. I never actually experienced any shocking revelations that shook meto the core. However, in retrospect I miss some conversations about my disability that never happened, and I wish that some that did happen had happened earlier.
At least that’s what I think now. Who knows, maybe my parents really did do the best that they could, and things actually went as well as they could have. As they say, hindsight is 20/20.
Sunday, February 16, 2014
Book Club: "The Man He Became", Part Three: "Resurrection", and Conclusions
James Tobin - Simon & Schuster, 2013
Part Three: Resurrection
Part Three charts Roosevelt’s political comeback, beginning with his Democratic Convention speech nominating Al Smith for President in 1924, running for and winning the Governorship of New York, mainly as a way of helping Smith in his second presidential run in 1928, then speeding up his long-range plan and running for President himself in 1932, after the Great Depression sunk the once-popular Republican President Herbert Hoover.
Tobin also describes how Roosevelt “discovered” Warm Springs, Georgia, where mineral hot springs provided a unique and effective environment for rehabilitation of people with Polio. Coming between Roosevelt’s 1924 reintroduction to politics, and his 1928 run for the New York Governorship, the Warm Springs experience helped refine his physical recovery goals, while he pursued an unusually self-directed approach to his rehabilitation.
Main themes of Part Three:
1. Where initially, Roosevelt worked towards and believed in “full recovery”, he later developed the idea that if he could walk with only a cane, then he could return fully to politics. This idea, in turn, evolved into a slightly different goal. Regardless of his actual physical capability, if he could manage his appearance and movements so as to put people at ease, then Roosevelt believed that would be enough for him to return to politics.
2. Roosevelt developed a hybrid of two general approaches to his medical and physical situation. He listened to and took seriously the advice of “traditional” medical and rehabilitation experts, but he felt increasingly empowered to choose from among their approaches the ones that he instinctively liked, and which seemed to work for him and others like him. He became a sort of proto-consumer of health care a lot like people today who chart their own course on medical questions.
3. Roosevelt really always had two kinds of goals … physical and political. At first, his political goals would have to wait for him to achieve physical recovery goals. Eventually, the two goals switched in umportantnce. The need to jump and political opportunity forced Roosevelt to change and even interrupt his physical goals. In the end, he pursued physical rehabilitation mainly in order to achieve political ends, not just because he wanted to walk.
4. Tobin discusses whether Roosevelt sacrificed a more complete physical recovery in order to honor Al Smith’s request that he run for Governor. It seems as though Roosevelt, himself thought so.
5. Because the political calendar is fixed, and recovery goals are rarely met on schedule, politics trumped rehabilitation. Roosevelt had to make his nomination speech in 1924, even though he might not have felt ready, because he was asked, and because the event was going to happen regardless. He had to run for Governor in 1924 because that’s when Al Smith needed him, and because 1928 was an election year … not 1929 or 1930. And he ran for President in 1932 because the incumbent President was unexpectedly weak in that election year, creating a unique opportunity that might not come again. At every step, though he would at first beg off, citing his need for further rehabilitation, Roosevelt took the opportunities that arose.
6. Roosevelt was an exceptionally private man, who preferred not to discuss his disability even with his closest friends and colleagues. However, he was unusually open and curious to discuss disability matters with other people who had Polio, both seeking and later giving advice.
7. Political efforts use Roosevelt’s disability against him failed for many reasons. Some accusations were just too outlandish to ever succeed. But another factor was that first political reporters, and later the public, wanted to buy into a great “comeback” story in which Roosevelt was a hard-working hero. People always like that, but during the Depression, that was exactly the kind of person people were looking for to put the country right. People were predisposed at that time to prefer Roosevelt’s positive narrative to the ugly rumors a few opponents hoped would gain traction.
8. Tobin closes by noting that Roosevelt’s way of improvising approaches to his disability were used again by him to fight the Depression. He explicitly said that rather than push any specific policy or ideology, he felt that the thing to do was try things, evaluate the results, make changes, and try new things. That is exactly how he dealt with Polio.
Conclusions
As I see it, Tobin makes three important points in "The Man He Became":
1. Roosevelt achieved the Presidency not in spite of Polio, but in a way because of it. The ordeal made him both stronger and more empathetic. Previously, he was a promising politician, but considered something of a lightweight and an aloof aristocrat. His constant improvisation in dealing with his disability also became the hallmark of his approach to the Presidency and efforts to combat the Great Depression.
2. From today’s perspective we can see in Roosevelt the beginnings of a new set of beliefs about disability that were more fully developed later … the reduction in stigma, the end of erroneous and superstitious beliefs about disability, and the idea that full physical recovery wasn’t the only way a disabled person could live a productive life. Most of all, Roosevelt short-circuited the equation between illness and disability … between weakness and impairment. After Roosevelt, people could conceive of a person being both disabled and strong.
3. FDR didn’t hide his disability. He did not perpetrate a “deception” as the current conventional wisdom now says. Rather, it was a “performance”. Over time, he developed the idea that he didn’t have to appear to be completely cured to return to politics, as long as he could mostly appear to be strong, and govern his movements so as to put people at ease. Through hard rehabilitation work and embracing some innovative approaches, he gained back enough mobility to do this. People could see that he was “crippled”, but in ways that didn’t worry them.
In addition to these, three other things stood out for me, as a person with a disability:
1. Roosevelt probably would have understood “The Spoon Theory” quite well. Polio, itself, started out as a painful, frightening, exhausting “storm” of an acute illness. Exhaustion and the careful economizing of stamina were forever after daily factors in Roosevelt’s life. Reading Tobin’s descriptions of the disease and the work of Roosevelt’s rehabilitation should cause any disabled or chronically ill person to feel a strong bond with Franklin Roosevelt.
2. I love the fact that while Roosevelt was an extremely private person about his own situation, he actively sought and almost reveled in connections with others who had Polio. He was a natural leader, but he was also a good listener and good learner, whether the teacher was a distinguished doctor or a 15 year old kid who had lived with Polio for longer than he had. Without realizing it, Roosevelt was pioneering “Peer Counseling”, not just as an individual pursuit, but in a more formal way at Warm Springs.
3. “The Man He Became” shows that the story of Franklin Roosevelt’s life with Polio doesn’t perfectly fit anyone’s preconceptions or ideology. It is a story of personal bravery and perseverance, and at times a story of confusion, fear, and trial-and-error. Roosevelt was utterly dedicated to his “recovery”, but he was able to remain so partly because his allowed his concept of recovery to change. I found it interesting that the issue that brought this subject up again in the 1990s … the idea of President Roosevelt in a wheelchair … was in some ways pointless, since he rarely used a wheelchair in his daily routine.
Most of all, I think, I’ll remember Tobin’s beautiful, gripping description of Franklin D. Roosevelt waiting to make his nomination speech for Al Smith at the 1924 Democratic Convention. The crowd's reaction was fascinating, but I was thinking more about Roosevelt himself, sitting there hoping he wouldn’t fall down in front of thousands in Madison Square Garden, and hoping the hell someone had thought to nail down the podium he would lean on to give his speech.
Then, having made it to the lectern, Roosevelt smiles and tosses his head, which would become one of his signature moves, because he can't let go of the podium to wave.
Weekly Wrap-Up
Sunday, February 9, 2014
Monday, February 10, 2014
Tuesday, February 11, 2014
Wednesday, February 12, 2014
Thursday, February 13, 2014
Friday, February 14, 2014
Saturday, February 15, 2014
Saturday, February 15, 2014
The Man He Became ... I'm Running Late Again!
I'm going to wait until tomorrow to write my final review of The Man He Became, by James Tobin, so I have time to think some more about what I have read. For now, I'll just say how amazed I am at how many ways Franklin D. Roosevelt was ahead of his time in how he understood and dealt with his disability ... probably not consciously, but quite profoundly.
Book Club Reminder: "The Man He Became", Part Three, "Resurrection"
It’s time for me to “read” (listen to) Part Three of “The Man He Became”, by James Tobin. This evening I’ll post my final review. As I’ve said before, I can already recommend it to anyone with a disability, especially a physical disability. People with chronic illness will also find a lot to relate to in the story of a man who got the most demanding job ever conceived, at the most difficult time possible to be in that job, while coping every day with a massively exhausting disability that started with a horrifically frightening sudden illness.
Friday, February 14, 2014
Disability Thinking - First Birthday
A year ago today I sat in my local Starbucks and set up a new Blogger blog that I named “Disability Thinking”. I had blogged on and off for almost 15 years prior, but rarely about disability, and I wanted that to be the main topic of my new blog. I had vague but rather over-blown ideas about the blog being just the first step in developing some sort of online magazine for people with disabilities. That idea is kind of on hold, though I still think there’s an unmet need for a certain kind of disability website with a certain tone and feel you don’t find in current disability websites, but you do find in quite a few personal disability blogs. More about that soon, perhaps …
Compared to some of the other disability blogs I visit, Disability Thinking got off to a slow start. I’m very pleased with it overall though, and at this point it is such a part of my life that I can’t imagine giving it up.
By far the most important element of whatever blogging “success” I’ve had is reading other peoples’ disability-related blogs. I read a lot of them, and I am always looking for more, but I want to give special thanks to a few, and recommend them to whoever reads this:
You can see a longer list of disability blogs I like over to the right, but these are the ones I look forward to reading, and get excited when there’s a new post. They have all also helped me develop my own blogging style, sometimes with direct advice, sometimes just by example. Emily at Words I Wheel By, in particular, gave me some great tips on networking through social media, and Ellen at Love That Max provides an invaluable platform for other bloggers with her Weekend Link Ups. Thank you all for you help and your continued blogging.
One thing I hoped I would find when I started Disability Thinking is a community of disability bloggers I could relate to and truly enjoy. I have found them, and I continue to find more. These are people who not only “get” disability issues in a similar way to me, but they are also funny, revealing, great writers, and they are … for want of a better term … cool. This gives me hope for the future. Even if the more organized parts of the disability community drop the ball on getting the next generation ready to take over, it will be okay because the next generation appears to be preparing itself just fine … if not better than the people who came before.
One thing I’d like to do better is explore and engage with a more diverse community of disability bloggers. For one thing, the majority of bloggers I follow are women, and I wonder if I am missing some perspectives from other genders. Another gap that bothers me is harder to define. I guess you could call it the “positivity” side of disability blogging. Because I am the person I am, I tend to gravitate towards blogs that highlight problems and have critical, negative, darkly humorous tones. I do come across lots of other blogs and disability-related writings that are much more positive, focused on hope and achievement, and expressing a sunnier mood. But, I have to work harder to appreciate them. I want to do that more in the future, because I feel like the gap between these two kinds of disabled people is more significant than we probably understand. It sometimes seems like the happy people and the grumps of the disability community barely speak to each other, not out of anger, but out of neglect. If that’s true, we are all missing out on the possibility of doubling our circles of support and friendship. I want to explore that more in the future.
Meanwhile, for the next week, I’m going to change the “Popular Posts” widget to show the most popular posts over the whole life of the blog, rather than just the last week as is usually shown. That way people can revisit some of the stuff I wrote early on. And seriously, why is my most popular post, by far, the weak piece of junk I wrote about “Forrest Gump?”
Thanks to all my readers, and all the people I read, for a great first year!
Andrew Pulrang
Disability Thinking
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