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:
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.
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.