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.

Read all three section reviews:

Weekly Wrap-Up

Disability Thinking - 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.

Photo Of The Day

Young man standing with two forearm crutches on sandy beach

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

Another Photo Of The Day

From the EasyStand Facebook Page.

Photo Of The Day

Photo of an Afghani boy with two artificial legs, standing with his father talking to him, kneeled down
From The Salty Sojourner Tumblr blog, via disABILITYaware.

Disability Thinking - First Birthday

Photo of a cupcake with a single lit candle in the top, against a black background
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

Thursday, February 13, 2014

“Parenthood” “ Friday Night Lights Crossover” Goodness

Two TV universes, in which disabled characters live and breathe, unite.

On “Friday Night Lights”, we got to know a high school football player who had a spinal cord injury resulting in quadriplegia. I won’t say his name, in case someone reading this hasn’t seen the show and might go and watch it on Netflix, but we got to see him take an almost complete journey through rehabilitation, denial, self-loathing, discovering a new community of paralyzed athletes, and finding a new plan for his life as an adult with a disability.

On “Parenthood”, we have watched as Max Braverman’s unusual behavior is diagnosed as Asberger Syndrome, and as his parents and extended family have dealt with this, sometimes well, sometimes kind of stupidly and selfishly, but always with love an devotion to Max.

To tide “Parenthood” fans over during the Olympics, NBC has produced a series of webisodes in which one of the Braverman kids, Amber, secretly tries her hand at record producing at the music studio owned by Max’s Father Adam and Uncle Crosby. The band is Crucifictorious, the “Christian Speed Metal” band put together by Landry on “Friday Night Lights”. Max is there to comment on the proceedings and film everyone with his iPhone.

There’s tons of in-jokes and stealth references to “Friday Night Lights”, and the whole thing is a wonderful, delightful geek-out. There’s not much in the way of disability themes, apart from some light humor about Max’s absolute, total, tactless but charming honesty. But that's okay. Disability doesn't always have to be center stage on a TV show, because it isn't always center stage in life.


And seriously, anyone interested in disabled characters on television should watch at least the first season of “Friday Night Lights”, and anyone with parents of a disabled or autistic child should check out “Parenthood”. Those back episodes are also available on Netflix.

Video Of The Day


Via the Just Rollin On Tumblr blog.

Photo Of The Day

Baby carriage next to a wheelchair, both viewed from the front, baby in carriage, young adult woman in wheelchair, turned to her left to talk to the baby, with the baby looking at her
From the Rough Pix Tumblr blog, via disABILITYaware.

Rookie Mistakes

Ideas topic icon
Or … advice for people just starting to have disability conversations.

This is similar to, but not the same as, disability etiquette or "Advice for the Non-Disabled". Those kinds of things address everyday social interaction and practical accommodation. This list is specifically for people who want to discuss disability issues, culture, and philosophy. It goes without saying but I'll say it anyway ... it is for people of good will, who want to have real conversations and want to avoid hurting people as much as possible. It isn't for people who consciously or unconsciously want to score points or impress people with how smart, compassionate, or "with it" they are. Also, it’s not just for non-disabled people. Plenty of people with disabilities are just dipping their toes in the water of disability as a topic of study or discussion. Real-life experience counts for a lot, but it alone doesn’t immunize against foot-in-mouth disease.

Finally, I call the items on the list "Rookie Mistakes" because they are things that people often say and do when they are new to disability-related discussions, and they are largely mistakes ... that is, unintentionally hurtful or annoying.

Enough preamble ... here's we go:

"People First” Language

Say “people with disabilities” or “person with a disability” in most formal, business or academic settings. However, be aware that quite a few people with disabilities don’t like “people first” language, and prefer to call themselves “disabled” or a “disabled person”. There are reasons for this, having to do with whether you see disability as part of who you are or as a separate characteristic, but it’s not really important to sort that out right away. Just stay away from “handicapped”, and above all, don’t use terms like “differently abled”, “handi-capable”, or any other phrasings that sound like they are trying very hard to make disabled people feel better about themselves. A few of us like this, but most of us find such terms to be kind of ridiculous and patronizing.

Practice Humility

Don't place your academic knowledge of disability ... learned in a class or seminar ... over a disabled person's lived experience. You can talk about your different view, or tell them what you have been taught. You don't have to agree with the other person. Just be respectful of the fact that you took a class, while the disabled person lives it every day. Beware of this especially if you start feeling angry that the disabled person you are talking to is "wrong" or "stupid". If you start feeling that way, it's time to step back and ask yourself who is the real expert.

Don’t Minimize Disability

In general, people with disabilities aren't comforted by thoughts and sayings that minimize the importance of disabilities. "I don't even think of you as disabled" and "We all have SOME kind of disability" are generally not helpful or kind things to say. They are the kind of things that can seem to be very insightful and empowering, but for the most part, will not be taken that way. Disabilities are real and have significant daily consequences. A better way to make us feel better or more understood is to acknowledge our difficulties once in awhile. Don’r pretend that they make no difference.

“Not Your Inspiration”

Don’t call disabled people “inspirational”. Just don’t. It doesn’t matter why you feel that way or what your good intentions are, it is something we have heard so often, and so often inappropriately, that it’s like fingernails on a chalkboard to us. I know fellow disabled people who are cheerful and optimistic every day, week in and week out, and even they want to vomit when someone says they or another disabled person is “inspirational”. You can probably express the positive feelings by simply picking a different word. Here are some suggestions that are less annoying, and in some cases more specific and accurate with particular people and situations:

Awesome
Role Model
Amazing
Badass
Cool
Eye-Opening
Thought-Provoking
Astonishing
Admirable
Hilarious
Honorable
Tough

Different Kinds Of Experience

There are all kinds of ways to “experience” disability. All of them have value and provide some insight. However, they are not all the same. Parenting a disabled child is not the same as being a disabled child. Working in a disability-related job is not the same as living with a disability. Walking with crutches for several weeks because of a broken leg can make you more aware of accessibility, but it isn’t the same as having to cope with barriers every day of your life. Participating in a “wheelchair for a day” event may actually mislead you into thinking that using a wheelchair is worse than it actually is, since you’re only doing it for a few hours, while most wheelchair users get good at it over a long time. The point here is to be careful about how you empathize with a disabled person, and don’t claim a different kind of connection than you actually have.

Under The Bus

Remember the old “Seinfeld” bit? “I’m not gay! … Not that there’s anything wrong with that!” There’s a similar kind of thing that happens in the disability community, where one group of disabled people try to explain themselves and escape stigma by back-handedly disparaging people with other kinds of disabilities and worsening their stigma. Probably the most common example is physically disabled people very strongly asserting that they are not mentally impaired. They do this because so often people do assume, say, that a wheelchair user is also cognitively disabled, or that someone who has impaired speech is not intelligent. The problem is that in denying that we are like THOSE PEOPLE, we imply that there’s something awful about THOSE PEOPLE. Non-disabled people have their own version of this, where they imply that rights and freedoms are fine and appropriate for one group of disabled people, but NOT for others. For instance, some educators might agree that segregated classes are terrible for a “smart” kid in a wheelchair, but that kids with Down Syndrome, Autism, or Attention Deficit Disorder really need to be in separate, “special” classes. Every person has unique needs, and one size does not fit all, but beware of those who defend hurtful, dehumanizing practices for certain types of people and not for others.

One final point I’d like to make about these “Rookie Mistakes”, is that because they are mistakes typically made by disability “newbies”, I believe we should go a bit easy on them. We can point out to them where they’ve gone wrong, but try not to unleash hell on them because they aren’t yet tuned into our somewhat specialized traditions and taboos.

What do you all think? I’m especially interested in hearing from “veteran” disability activists and thinkers. Are there other “Rookie Mistakes” that are forgivable but need correction?

Drive

I wrote the following last night in a comment to a fellow disability blogger, Emily at Words I Wheel By, who just passed the road test for her driver’s license:
"Considering the amount of money and time spent trying to “help” people with disabilities, it’s kind of amazing how little organized effort there is helping us get driver’s licenses, cars, and driving adaptations. There is almost nothing … short of a wheelchair if you need one … that instantly bestows mobility and gets us closer to equality like a driver’s license and a car we can drive."
It’s really true, and not much talked about, it seems to me. Back around 2009 - 2010 when the Obama Administration was discussing what kind of economic stimulus to propose, I remember thinking that they should figure out a way to buy a van or other vehicle for every significantly disabled person in American who was demonstrably capable of driving or learning to drive, with adaptations if necessary. I have no idea how much money that would cost, or how it could be done without pissing off as many people as it helped (because of course, thousands of disabled people wouldn’t make the cut to qualify, no matter how you designed the program).

Still, a drivable car with adaptations buys one hell of a lot of independence and work readiness for someone with a disability. And the biggest barrier to us getting behind the wheel isn’t physical problems, it’s affordability. Just buying disabled people cars would be money well spent.