"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.

Weekly Wrap-Up

Sunday, January 19, 2013

• Website Changes
• Powerful, On Topic Music Video

Monday, January 20, 2013

• Is It Okay To Call Myself “Disabled”?
• Photo Of The Day

Tuesday, January 21, 2013

• 3 Disability “Red Flags”
• Ad Presence
• Book Club: “The Man He Became”

Wednesday, January 22, 2014

• Red Flags … Followup
• “Bless Your Heart”
• A Bit Of Mainstream News News

Thursday, January 23, 2014

• Don’t Wait, Don’t Hide
• Ed Roberts

Friday, January 24, 2014

• Book Club Reminder
• Photo Of The Day

Saturday, January 25, 2014

• Photo Of The Day
• Nursing Homes
• Book Club: "The Man He Became", Part One: "Virus and Host”

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

The Man He Became: How FDR Defied Polio to Win the Presidency

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

Rescue crews at Quebec fire site facing 60 cm of ice; 24 still unaccounted for

CTVNews.ca 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

From The Experience Tumblr blog, via Sunshine, Been Keeping Me Up For Days.

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

Photo Of The Day

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.

Ed Roberts

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

"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.

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"

Misguided praise for parents of children with disabilities: The Bless Your Heart Phenomenon

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!