"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.

Disability Thought Of The Week: Your First Time

When did you first flex your advocacy or activism muscles?

What was the first time you really spoke up for yourself, as a disabled person, to assert your rights and disability-related needs? What was the first time you participated in activism, with other disabled people, on a disability-related public issue? When was it? What was it about? At what point in your life did it happen?

I’m asking myself ... and I’m asking you, the reader. Respond however you are able, with a blog comment below, a Twitter reply, or a Facebook comment.

Misery Calculator: Reheated, Renamed

This is the third time I've written about this, but it's an idea I can't fully let go of, so ...

One of the first things I wrote on my blog that came straight out of my head, and wasn't a commentary on something else, was an idea I called the Misery Calculator.

It grew out my attempt to more fully understand one of the core ideas of disability culture ... that the suffering in disability comes from ableism and external barriers, not from our disabilities themselves. I accepted this for years. Yet, I always found that there were some aspects of my actual disabilities that were hard to live with, and couldn't be blamed on anything or anyone else but my own physical condition. When I got into disability blogging, I found others in the disability community, particularly "chronically ill" people and "spoonies," who seemed to have the same experience, somewhere between the Medical and Social Models of disability. A perfectly accessible, non-ableist world would be a lot better in a thousand ways, but at least some of our disabilities would still be there, causing at least some amount of misery.

So I came up with six measures of "misery" associated with disabilities. Three of them are basically "medical," existing in your own body, and three are "social," factors that exist in the world outside of yourself. For this post, I've tweaked the categories and definitions a little, but they're basically the same. I've also decided to change the name of the thing to Disability Calculator. Here are the measures, roughly defined:

Medical

Pain / Illness
How much do you hurt and / or feel like garbage?

Stamina / "Spoons"
How much energy do you have to do things?

Physical & Mental Functioning
How well or poorly is your body and / or mind operating?

Social

Physical Barriers
How often are you blocked or inconvenienced by physical barriers?

Lack Of Tools & Supports
To what degree do you have or lack the tools and supports you need, and do they work right?

Ableism
How much does disability prejudice deprive you of opportunities and / or add to your stress?

This corresponds to the Medical Model / Social Model idea. The six point set of measures, divided into two broad categories, allow you to get a feel for how much each "model" really describes your disability experience. You also get a 0 to 30 point measure of how much overall disability you experience, both Medical and Social.

I am going to start running a weekly score for myself, just to see how much my Medical Model / Social Model balance changes over time and in what ways. Here is my score for this past week:

What this tells me is that while I experience a significant amount of difficulty that corresponds to the Social Model of disability, most of the problems I have with my disabilities come the disabilities themselves. And by far the most significant single factor for me is stamina. I'm rather a "spoonie." On the other hand, I do encounter some physical barriers in my daily life, (mostly having to do with being 4 feet tall in a 6 feet tall world), and some ableism, On the plus side, I have pretty good and effective, (though not complete or perfect), tools and supports. At least that's how it was for me last week.

Try it yourself. Give each measure a score between 1 (good) to 10 (bad), based on your disability experience the last week. What's the balance for you?

My Obamacare Story

The White House wants to hear peoples' personal stories about the Affordable Care Act, a.k.a. Obamacare. I think I know what kind of stories they hope to hear, but the format of their inquiry allows for open-ended, freestyle response, so here what I submitted:

I have had physical disabilities all of my life. Until I was 22, I was on my father's health insurance. He was an independent pediatrician, and I'm sure paid for the family's health insurance out of pocket, though I have no idea at all how much he paid. From my perspective as a child and youth, as far as I know, we never had any problem getting my many surgeries, braces, hospitalizations, and therapies paid for.

Later, my father went to work in public health, and got the family's coverage through the county and later the state he worked for. When I aged out of family coverage, I was able to continue my coverage through COBRA payments, which were expensive, but necessary since going without health insurance was not an option, and a break in coverage would have created a "pre-existing condition" problem for picking up subsequent coverage.

When I finished graduate school I was able to get health insurance from my full time job. My disabilities were never an impediment to full coverage. I paid 20% of the premium for a pretty good plan.

In 2012, after a little over 20 years of full-time work, my disabilities altered and progressed in ways that made it necessary for me to stop working full time. I again continued my work-based coverage with COBRA for about a year. Then, through a combination of the Affordable Care Act and New York State's "Medicaid Buy-In" for working people with disabilities, I was able to qualify for Medicaid and continue to receive it while doing the part-time work that was within my capacities. Having gotten Social Security Disability, I also eventually was enrolled in Medicare.

At the moment, Medicaid and Medicare pay for the ventilator and oxygen concentrator I use every night while I sleep, and for medications I take every day to make my disability-related chronic health conditions controlled. These are life-preserving treatments, and they also make it possible for me to work to the degree that I can. Also, on average, I am hospitalized once every two years or so due to upper respiratory infections. There are effective treatments for this, but of course hospitalization is prohibitively expensive if paid for out of pocket. Without Medicaid, especially, I would be forced into a much more dependent situation and my health would deteriorate severely.

The Affordable Care Act was an absolutely crucial bridge from one work / health situation to another. And Medicaid itself is one of the main foundations of the life I live now. In the future, should I need everyday home care, I know that Medicaid will be there as no other insurance can ever be ... unless Medicaid is significantly cut or made into something less than a direct entitlement. The Affordable Care Act has been a tremendous benefit to me. And by making it possible for me to work to my changing capacities, it has enabled me to continue contributing to my community in the work I am able to do and the taxes I pay.

Disabled people in particular really need to talk in detail about not only Obamacare, but Medicare, Medicaid, and overall what health insurance means for us.

Click here to tell your story.

I Used To Think ...

I have been toying with starting a new post series on how my thinking about disability has changed over the years. Something like this …

During Thursday’s #CripTheVote Twitter chat, a troll spent some time mocking what we were doing. It was mostly standard-brand conservative ridicule of “Social Justice Warriors.” But at one point he identified himself as a “fellow” disabled person, and specifically criticized us for being proud to be disabled. He said he’d never be “‘pathetic enough” to be proud of his disability. I didn’t respond, because I didn’t want to help him derail the conversation, but I wanted to ask, simply, “Why not? Why AREN’T you proud to be disabled?”

I used to think it was really clever and important to view my disabilities as totally separate from me as a person. I completely bought into "person first" language … not because I thought I had to remind people that I was a PERSON with disabilities, but because to me it was critically important that I was a person WITH disabilities. Disability was a “thing” that I “had.” I viewed my disabilities as very real things that affected my life, but insisted that they were sort of like add-ons, discrete attributes, not significant aspects of who I was.

That’s how I thought about disabilities from about age 22 to about four years ago, aged 45. I was fully politicized, understood and supported the Social Model of disability, and by and large felt either positive or neutral about my own disabilities. Yet, the idea of disability as an identity was more of a theoretical construct than a reality for me. I didn’t see the logic of disability identity until I started blogging, and encountered so many people who not only felt that their disabilities WERE integrated parts of their identities, but were adamant about it in an affirmative, even joyful way.

I still don’t think a lot about my own identity. It doesn’t feel that important to me, personally as a topic to puzzle over or crow about. However, I do see now how disabilities have shaped my identity, at least in the sense of my place and profile in society. And I feel like I understand a lot more how important it is for disabled people to embrace their disabilities, not just drily acknowledge them.

In future “I Used To Think …” posts, I will probably write about:

- The time in my life when the LAST THING I wanted to do was work any job related to disabilities.
- When I “discovered” the disability rights movement.
- My changing perspective on diplomacy and assertiveness in disability activism.

I would also love to hear about other peoples’ major changes in their disability thinking.

Accessing The College Experience

It’s just about college starting time, so I am sharing two very different videos that have me thinking back to when I started college.

The first is an advice video by Robyn Lambird, for disabled people getting ready to go to college:

This is all excellent advice. I'm not even sure I would add anything to Robyn's five points. Anything more would be either general life advice, or the thick weeds of self-advocacy strategy and tactics ... which would really require several more videos. This is a great start for anyone with a disability getting ready to go to college.

The next video I think calls for something like a “Privilege Warning,” because I’m going to talk about accessibility of a very elite and exclusive college experience. You’ll either find the video charming or disgusting, probably based on your view of the relative nature of social privilege and top-dollar private colleges.

This is a video about Freshman Trips at Dartmouth College, which is where I graduated. A friend of my mother’s brought her daughter to visit Dartmouth back in the Spring, and I drove over to have lunch with them. Going back to visit Dartmouth always makes me nostalgic. Dartmouth is really good at doing that, and it’s entirely deliberate. It all starts with those Freshman Trips … a variety of hiking, biking, canoeing, and other outdoor activities organized by the Dartmouth Outing Club. The idea is to initiate, (indoctrinate?), incoming Freshmen to the Dartmouth culture, and bond them as a class, while introducing them to the natural beauty of New Hampshire that surrounds Dartmouth.

My connection to Freshman Trips at Dartmouth is complicated. I signed up to go on a beginner-level hike, which seemed at the time like the only physically feasible option for me. As I have written about before though, I got very sick a few weeks before starting Dartmouth, and so acute illness prevented me from going on a trip. So, I missed this pivotal bonding experience, in a way because of my disabilities, in a way not. I would have missed it still, even if it was Measles or Mono or something like that. However, it seems pretty obvious to me now that the trip might have been a disaster anyway. There were no adaptations planned, and I don’t know what they could have done to accommodate me even if I had asked. I do remember that some arrangements were made for me to join in the final evening’s activities at the Moosilauke Ravine Lodge, so at least some people there knew that being included would be important for me. I don’t recall exactly why I didn’t end up going even to that event, but it was probably health related. As I said, I was dealing with a mix of my underlying disabilities and acute illness nobody could really do anything about. Sometimes, when you’re sick, you’re just plain sick.

Watching this video now, I wonder whether the Freshman Trips at Dartmouth today accommodate students with disabilities. The campus is much more accessible today than it was when I was there in the late ‘80s, so it seems reasonable that there are mechanisms to ensure that the full Freshman Trip experience is accessible to disabled students. But I don’t see any evidence of this in the video. Although Dartmouth is, by some measures, one of the more conservative of the stodgy, elitist Ivy League colleges, the actual, on-campus culture includes a strong interest in social justice. Of course, as we all know, politically progressive cultures don’t always have a clue about disability rights. It's equally possible I would find the current arrangements really impressive, or completely unchanged 31 years later.

I should probably send an email to the Alumni Magazine or something and ask about it. In fact, I am curious now about all sorts of things having to do with disability at Dartmouth. Despite missing out on a few things, my experience as a disabled student at Dartmouth was very positive. As I think I have mentioned in this blog before, at the time, Dartmouth dealt with disability mostly on an ad hoc, accommodative basis. There wasn’t much accessibility and consideration of rights built into the system yet, but the general attitude of the administration and faculty was to be responsive to student’s needs. That fits with the overall culture of Dartmouth. They are very selective about who they admit, but once you’re in, they want you to succeed and will do a lot to see that it happens.

I wonder how much of that has changed, and if it is all for the better. My worry is that there may be more institutionalized supports and recognition of rights, but also more bureaucracy defensiveness surrounding it.

I’m definitely going to try to find out.

I Used To Think ...

I have decided to start another new series of related Disability Thinking Posts. First, I'm going to finish the last one I started ... the one about Three Threats To Disabled People Today. But then I'm going to start a series called "I Used To Think ..."

Each edition will be about a specific way my thinking about disability has changed over my lifetime. For example, I might write posts about changes in how I think about:

- Disability language and terminology
- Disability awareness
- Advocacy strategies
- The nature of ableism
- What "successful" life with a disability looks like

I'll definitely cover these topics, but probably others too. The series could go on indefinitely.

How has your thinking about disability changed in your lifetime? Feel free to share in the Comments, now or when you see an "I Used To Think ..." post.

Shopping Strategies

One of the most energy-expending things I do on a semi-regular basis is shop for groceries. I enjoy a few aspects of grocery shopping, especially the part when I am almost done with it, but mostly it’s just a tremendous pain that forces me to confront my physical disabilities head on. I’m not tired all day after a big shopping trip, but I try really hard not to shop on a day when I have any other obligations.

Recently, I made three deliberate changes in how I lay in supplies for myself:

1. I order bulk goods online and have them shipped to my door. This works great for non-perishable foods I use a lot, physically large items, and very heavy items. For example: laundry and cleaning supplies, canned goods, cereal, snack chips, paper towels, toilet paper. I use Jet.com, an online retailer that ships for free, and also Amazon.com which also offers free shipping when you have an Amazon Prime membership. It’s a little more expensive than going to Walmart or Costco, but it more than pays for itself in convenience and sheer physical accessibility.

2. I maintain a running shopping list using the Grocery IQ iPhone app, and I try to eat away at it with small trips for just a few items that can generally fit in one or two light bags I can carry from my car into my apartment in one trip. It’s usually easier on me to do several short shopping stops like this than one big trip. If I'm already going to be out for something else, might stop and get just bacon and bread, checking those off my list and making it that much smaller for my next real shopping trip.

3. When I do have to do a very large single-trip shopping, I try to arrange it so a friend or paid aide will be available to help me carry all the groceries from my car into my apartment. I use the electric cart at my local big supermarket, so the actual browsing and choosing products doesn’t bother me that much. It’s the getting there, parking, walking in, getting out, and especially the car-to-apartment trip and putting stuff away that’s the real killer. A bit of help with that once a month is a nice thing, and even a good investment if you have to pay someone for it.

These steps accomplish two things. First, It makes shopping easier for me, less draining, more accessible. Second, and even more important, because these strategies make shopping easier, I am much less likely to procrastinate and go without important supplies. One thing about physical disabilities and chronic illness is that unfortunately, just not doing a thing is always a possibility. That’s certainly true for things we’d like to do, but also for things that, strictly speaking, we really have to do. And shopping is one of those things I have always found it relatively easy to put off, or do in a half-assed way that feels better in the moment, but is bad for me in the long run.

That’s why it feels remarkably great to have these strategies that have made shopping, to me, a much more feasible and even satisfying chore. It’s never too late to learn to adult, and to adapt.

A Bit Of Local Advocacy

A little over a week ago, the local newspaper where I live published an article about a community forum on New York State’s plans for reforming and all but phasing out sheltered workshops. The exact directives and lines of authority are a bit murky, but the article mainly focuses on the idea that due to the Olmstead decision, a well-known sheltered workshop in Plattsburgh, my home town, is being forced to adopt changes that threaten its survival. What caught my eye, of course, was the headline:

Advocates for disabled: Integration not the answer
Tom Marble, Press-Republican - May 5, 2016

“Oh, crap!” I thought. I had a pretty good idea before I even read the thing which agency or type of agency was probably involved, and what the message would be. It was our local ARC, named the Advocacy and Resource Center, which runs a sheltered workshop called Champlain Valley Industries, (CVI). And the article basically recounted a bunch of CVI staff, workers with disabilities, and families saying, in effect, “Please don’t close the workshop. I like working here!” with an added implication that with unemployment a big problem around here as it is, how in heck are these people supposed to get a normal job? How is it an improvement for them to be kicked out of productive work in a safe, sociable environment and then not be able to get a job at all?

The overall point seemed to be that the big bad State is ruining things as usual, sticking their noses in and touting pie-in-the-sky ideas that have no relation to the way things really are.

I'll stipulate that this workshop probably IS safe. It's certainly nothing like those horror story places where people are virtually imprisoned, plucking dead chickens for pennies a day, housed in unsanitary bunk houses, exploited for huge profits. It's not like that. However, it is a highly regulated workplace, cut off from the wider community, and I'm not at all sure socializing is encouraged in the actual workshop. It's more likely that being chatty and having fun is carefully documented as inappropriate behavior, and taken as clinical evidence that these workers aren't ready for mainstream work. But the important thing is that they have something to do and a place to go during the day, which is quite a win-win for everyone ... or so the reasoning goes.

The day the article came out, I think, I happened to be talking or emailing with Robert Poulin, who is the Executive Director of the North Country Center for Independence, where I used to be the ED. He said he was going to work on a response and asked if I wanted to work on it with him. I was happy to do that, and today the Press-Republican posted our “In My Opinion” online. The article will be out in print tomorrow.

In My Opinion: Sheltered workshops not the answer
Robert Poulin and Andrew Pulrang, Press-Republican - May 17, 2016

Incidentally, another local disability activist reminded me last week of a Press-Republican article in 1993, about another community forum where the ARC brought lots of it’s “clients” to protest another effort towards more community integration … in that case a plan to fold the ARC’s buses into a county-wide combined fleet open to everyone. This, of course, would have meant people with developmental disabilities riding the bus with non-disabled people, and just about everyone who spoke were against it, though most of them put it in terms of losing a service, not directly objecting to integration. There is a similar dynamic at work now with the sheltered workshop issue. They don’t directly oppose having a better job or getting paid more, it’s just that they don’t want to loose a thing they have, whatever it is, for any reason.

The reminder of that hearing triggered vivid memories. It was the first time I saw how internalized ableism among people with disabilities sometimes motivates us to oppose things we should not oppose. It’s also the first time I really understood that the “disability community,” like every community, doesn’t have agreed upon opinions about things. The most you can say, I think, is that those of us who are engaged in disability policy issues by choice share a fairly predictable and distinctive set of ideas about disability. Those of us who aren’t engaged, or are engaged only when forced to be, are much harder to predict, and more likely to be swayed by fear of change.

Ironically, we share most of the same negative experiences of ableism and being “screwed” by ham-fisted “authorities,” but we come to different conclusions on what to do about it.

I also want to say that it was a real pleasure to work with Robert on our response.

Rare Disease Day

I see that it is Rare Disease Day again. I find that I posted something about it and my “rare disease” two years ago. What I wrote then stands up pretty well, so I’ll just go ahead and link it:

Rare Disease Day (Better Late Than Never)
Andrew Pulrang, Disability Thinking - March 1, 2014

At the end of that post I said I would read the Wikipedia page on arthrogryposis, in case there was something new for me to learn there. As it happens, I did learn a few things:

- Arthrogryposis is a more varied condition than I thought. I recognized many of the listed symptoms, but others were things I have never experienced.

- The article says that arthrogryposis may be genetic, and then says that, “The exact causes of arthrogryposis are unknown yet.” Somewhere around the mid-‘80s I was told, without much hint of doubt, that it was genetic. I don’t know whether the article is wrong or my information is out of date. The answer doesn’t make much difference to me, but I might do some further digging to find out.

- The article talks about some improvement in muscles and contractures being somewhat common as a person with arthrogryposis ages. That is certainly what happened with me, up to a point. And while I had a LOT of surgery that contributed to my mobility now, I also had the feeling back around my late teens that my feet, legs, arms, and hands didn’t really need therapy anymore to maintain their usefulness. Everyday activity seemed enough. I guess that matches up with these broader conclusions.

- There is almost nothing in the Wikipedia article about arthrogryposis and aging, which would actually be useful information at this point. That’s another thing to do some more digging for.

I am still not all that interested in arthrogryposis, but i feel like I am well past the point where not being interested is some kind of weird psychological hangup or point of pride. So that’s good, probably.