"My Scoliosis Story"

X-ray showing a spine curved by Scoliosis, (not mine).

In January 1977, I had spinal fusion surgery to arrest and correct worsening Scoliosis. I was 10 years old. It was done at the Montreal Children’s Hospital, in Montreal, Quebec, Canada. It was the most serious and complex of the many surgeries I have had in my life to address various aspects of my underlying condition, which is Arthrogryposis. A little over five years ago, I blogged about what I remember from that experience:

Hospital Memories
Disability Thinking - November 7, 2013

I’m thinking about all of this again now because I recently discovered, quite by accident, several YouTube videos documenting Scoliosis surgeries and recoveries. For a few days I was sort of obsessed with them. So far, I’ve watched 8-10 series of videos. These are my two favorites

Julia Carlile // merseygirls

This is the first series I stumbled upon. It turns out Julia is semi-famous in the UK, as a member of “Britain’s Got Talent” competitors “Mersey Girls,” a dance troupe. But I didn’t figure that out until well into her series of videos documenting her scoliosis surgery.

TheScoliosisDiaries

This young woman and her mother are hilarious together, and in the best way. They really don’t seem to be putting on a show, and their attitude seems genuine, with only a very small dose of hipster irony.

The first thing I noticed about these, and the six or so other video series I watched, was that their surgeries and recoveries were much more effective and less arduous than mine were 41 years ago. They were sitting up less than 24 hours after surgery, and walking the next day. None of them were in casts or back braces afterwards. They all got dramatic curvature correction. Julia’s operation even left her spine flexible, so she can continue dancing. It’s just really impressive.

My biggest surprise is that I’m not a bit envious or resentful that their experiences and outcomes seem so much better than mine. Honestly, I’m not. I’ve asked myself several times … “Doesn’t this make you angry?” No. It doesn’t. It’s super interesting to me, but that’s all. I guess that’s good, but it’s also a little weird.

My other takeaway is that I’m reconsidering my feelings about “inspiration porn” and the usefulness of the Medical Model as ways for some disabled people to process their own disabilities.

Some of the “Scoliosis Journey “videos I’ve watched are heavy on inspiration … all about “fighting” Scoliosis, with soundtracks of self-esteem-themed pop songs, and bland platitudes about overcoming and perseverance. But just as many of the videos are more subtle, straightforward, and unsentimental, like the videos embedded above. The people in them talk about their feelings and thoughts in specifics. They present as unique personalities, with distinct points of view, experiencing real things, not players in an overworked narrative. They are also funny, and I find that makes a huge difference.

Granted, there is probably a lot missing from these videos. For instance:

- We see some fear and anxiety, but little hint of real confusion, or any sense of feeling trapped and forced into the procedure. Maybe that’s because they all are really okay with what’s happening, but it’s got to be a pretty common feeling among children and adolescents undergoing this procedure.

- There’s little to no evidence of real conflict or even minor friction with the hospital staff. Again, maybe that’s because everything went swimmingly. But on average, I would say it’s more common for there to be at least some disagreement or personality clashes during a hospital stay, even if it’s just irritation that never becomes serious. I wonder if it would even be possible to continue with this kind of documentation if some kind of dispute emerged. Would the hospital try to shut down filming that looks like it’s going to make them look bad, instead of cheerfully participating as they seem to do in these videos?

- Only one or two of the videos I watched included any hint of viewing Scoliosis as a disability, in the broader, social identity sense. For most of these people, it’s just a medical condition to be taken care of. A few seem to view their documentation as a kind of peer mentoring for other people with Scoliosis, which can be the start of a broader disability consciousness. But for the most part, the people in these videos don’t yet seem to have much of a sense disability identity, good or bad.

And you know what? They seem to be fine anyway. Maybe its a good reminder that while the Social Model and disability identity contribute to a full understanding of disability and addressing correctable injustices in society, they aren’t always necessary for individual disabled people to live a happy life.

As for “inspiration porn,” the key to me is that these really are the patient’s own stories, told from their point of view, even though it’s almost always parents behind the cameras. Even when family and friends appear on camera, they don’t try to make the story all about them. I am also struck by the fact that although these people are clearly approaching Scoliosis from a Medical Model point of view, none of them seem to view themselves as “fighting” Scoliosis, and the sure don’t seem to hate the way they are or feel flawed or ostracized. They’re hopeful of improvement, but not particularly desperate.

The only thing i would like to say to these young people about their experience is that I hope they never feel they have to be cheerful and positive all the time. I’m sure they aren’t always upbeat anyway, but I hope they don’t beat themselves up about it when the pain in their backs, or maybe the funny way people may still look at them, gets them down. Like I said, they seem to be doing just fine without a deep relationship with disability culture or an understanding of the nature of ableism. But it’s one thing to be a positive person. It’s another to think it’s your responsibility to be that way.

These stories are obviously not fully representative of Scoliosis, and certainly not of disability in general. But I think they might be useful examples of how to maintain a healthy mix of the Medical and Social models, and a healthy balance between sentimentality and practicality when telling your disability story … to others and even to yourself.

Throwback Thursday

One year ago in Disability Thinking: Hospital Blogging! Part 5

Last year, I spent a week in the hospital with pneumonia. I blogged about the experience, and exactly a year ago today, I posted this wrap-up after coming home. My hospital experiences have been mostly decent, so why do so many disabled people have terrible histories with hospitals? One of my theories is that in most case that go bad, everything starts out just fine. Then something happens … a staff member pisses off the disabled patient, or the disabled patient pisses off the staff. Trust and respect are almost immediately destroyed, and are replaced by the worst stereotypes the disabled patient and staff have of each other. Disabled people are nit-picky whiners, manipulative, secretive, over-vigilant, and spoiled. Doctors and nurses all hate disabled patients, disapprove of them, and want to bang them all in nursing homes at the least excuse. Once things start to go bad, it’s very hard to get them to go in the other direction. That’s what I think happens. I don’t know how to fix it, and I’m acutely aware that I’m lucky it hasn’t happened to me … yet.

Two years ago in Disability Thinking: Questions Not Asked

Yes, there is a pattern here and it seems like disability bloggers are well aware of it. Every April, we get a flurry of heartwarming news stories about disabled kids being invited to the high school prom by non-disabled students who are presumed to be doing it as an act of kindness or charity. And then a relatively small handful of disability bloggers and commenters try to remind everyone that disabled kids are human beings and not motivational characters in other peoples’ morality plays. We probably sound really sour and cynical. But I really think it’s hard to dismiss these more specific questions about the journalism side of the routine. It’s pointless and probably kind of mean to vent our frustration on the students, families, or maybe even the schools involved. But journalists are supposed to ask questions, even about “good news” stories, and these are important questions that could yield truly interesting answers. We’re all still waiting for a real story about disabled kids, high schools, and the prom.

We Are The Enemy

Anesthesiologist trashes sedated patient — and it ends up costing her

Tom Jackman, Washington Post - June 23, 2015

(Via Eschaton)

I feel like this is another example of something disabled people encounter a lot from the medical profession … an underlying, mostly unstated belief that patients are the enemy.

We are stupid. We delude ourselves. We just want drugs. We crave attention. We whine and whimper and we should learn to suck it up. There’s always a “real story” we’re not telling. We lie.

I think this is part of medical culture, and it affects everyone. But disabled people experience it more often, because by definition we are harder to treat and figure out. It takes more effort to treat us, and almost nobody really likes having to work harder on the job. Plus, if our symptoms and complaints don’t match up with familiar patterns, it must be because we’re not telling things right, or maybe it’s all in our heads.

"The doctors then discussed “misleading and avoiding” the man after he awoke, and Shah reportedly told an assistant to convince the man that he had spoken with Shah and “you just don’t remember it.” Ingham suggested Shah receive an urgent “fake page” and said, “I’ve done the fake page before,” the complaint states. “Round and round we go. Wheel of annoying patients we go. Where it’ll land, nobody knows,” Ingham reportedly said."

I’m not saying that everyone in the medical profession thinks or acts the way the people in the article did. Most doctors and nurses are better than this, most of the time. But I think everyone in the profession recognizes the attitude. Other than outright greed, it is the medical profession’s principal dark side … seeing patients as obstacles or enemies to be overcome or outwitted.

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Doctors ... Just Relax!

Doctors' Ignorance Stands In The Way Of Care For The Disabled

Leana Wen, National Public Radio - May 17, 2014

"More than half of medical school deans report that their students aren't competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don't require clinicians to demonstrate knowledge or skills in treating patients with disabilities.”

So disabled people get measurably worse medical care because caring for us properly is too hard?

This reminds me of a circular argument we sometimes hear in public education. Classroom teachers often say that they shouldn’t be teaching significantly disabled students because they aren’t properly trained, like Special Ed. teachers are. Their belief is self-fulfilling. When a teacher decides that teaching disabled students it is beyond them, then they will, in fact, do a pretty poor job.

I think it’s the same with doctors. An ER doctor doesn’t have to know all about every disability to treat a disabled patient well. What they need, I think, is a little more confidence, an open mind, and really good listening skills.

The doctors cited in the article don’t believe they are “competent” to treat disabled patients. I would agree that many of them are insensitive and fearful of disabled people, but I don’t accept that broadly speaking they are incompetent. We are people, not internal combustion engines or integrated circuit boards. What doctors need is to realize how similar we are to other patients, not how different. They should be more confident, and not shy away from us just because we aren’t the norm.

The problem is that these doctors do end up treating us anyway especially in settings like the ER; someone’s got to. And when they do, as often as not, they are awkward, rushed, and unresponsive. They can do better, but because they don’t think they can, they don’t.

A bit more training in medical schools might help, but I don’t think it would take much. Instead of a whole course, what doctors need to hear is: “Relax! You are a fully qualified physician. Just do you thing, listen to your patient, and quit trying to pass the buck.

Hospital Memories

The last time I had surgery directly related to my disability was in early January, 1977. I’m pretty sure this is correct, because I distinctly remember watching Jimmy Carter’s Inauguration on a little black & white TV on a wall bracket in a room at the Montreal Children’s Hospital.

I had all of my disability-related surgeries at the Montreal Children’s Hospital. I don’t know if that’s because it’s where all complicated pediatric cases in Plattsburgh, New York were sent at that time, or because my father had done some of his pediatric internships there. Nowadays, people from our area go to Fletcher Allen Healthcare in Burlington, VT, or the Dartmouth-Hitchcock Medical Center in New Hampshire if they need specialist stuff, but back then, I think Montreal was the place.

I don’t know exactly how many surgeries I had there. When I was around 8 or 9 years old, I remember finding out that I’d had like 10 surgeries to that point, several of them when I was an infant or toddler. So I’ll take a guess that the total might be 11 or 12. Strange as it may seem, I don’t think I have a definitive record of my early medical history. I think for fun I’ll get in touch with the Montreal Children’s Hospital to see if they can send me any old records they might still have. I’m also kind of curious to visit the place again, sometime before they finish the new building in 2015.

Some things I remember about MCH and my experiences there:

- By far the best thing about my yearly checkups at MCH was that we would get lunch at McDonalds afterwards … something that just never happened with my parents back home.

- The dominant smell of the place was chicken soup.

- The night before my last procedure there … extensive spinal surgery … they prepped me at 5 AM. This meant that they washed and shaved by back and covered it with a sterile sheet. And there I lay in a kind of drafty, chilly hospital room. My father came in and saw this, got pissed off, and covered me with a blanket. This caused a minor uproar because it meant they had to wash my back all over again.

- That surgery was the first time I got a taste of addiction. I hated, hated needles at that age, but after a few days I got to where I literally counted the minutes until I could have another shot of whatever powerful pain medication they were giving me. I assume they did everything right because I never got truly addicted in a harmful way, but I do remember a distinct cycle of pain followed by relief that seemed to have more to it than the actual pains in my back.

- A woman who went to our church at that time recorded herself on cassette tapes reading “The Lion, The Witch, And The Wardrobe” for me to listen to while I was in the hospital. I still reread the Chronicles of Narnia every few years.

- While I was in surgery, my parents made friends with a woman who was waiting for her daughter who was also in surgery. They had come all the way from Jamaica for the operation. I remember the mother visiting my parents and me in my room, and I think maybe Mom and Dad went to see her and her daughter in her room, too.

- My mother stayed in Montreal most of the time I was in the hospital, at the apartment of a very good friend of my parents. The place was just a few blocks away from the hospital, so Mom would walk back and forth. I remember her telling me about walking back to the apartment through a blizzard, saying that it was both scary and beautiful at the same time. Snowstorms in Montreal are like that.

I can't say I have happy memories of MCH itself, but I have some happy memories indirectly related to it, connected with that time of my life and the people around me then.

• Wikipedia: Montreal Children’s Hospital