Disability Thought Of The Week: Toughness & Vulnerability

When I was younger and just becoming familiar with disability activism and culture, one of the main ideas we were supposed to convey was that disabled people were tough. We were resilient, adaptive, persistent, low-maintenance, and easy to get along with. This message was deliberate. Disabled people are constantly underestimated and assumed to be weak, fragile, and just plain weird to be around, so it makes some sort of sense to emphasize the opposite qualities.

Now, roughly 30 years later, it feels like we are coming to grips again with vulnerability, not just as a community, but individually. Part of our message now is that we are not superhuman. We are not endlessly adaptable. Our resilience is not bottomless. Our patience and good cheer have limits. We get tired, anxious, depressed, and angry, and sick ... and not "just like" everyone else does, but in ways that are specific to our disabilities.

I appreciate this more balanced view of disability. It certainly fits my own disability experience, which is a combination of real capabilities and real weaknesses. But sometimes I sort of miss the tough, resilient, easygoing image. Because part of our reality is that we are tough, we are resilient, and given the crap we have to deal with every day, we are incredibly patient and damned delightful. Maybe we can be both. Maybe toughness and vulnerability are the true hallmarks of being a disabled person.

"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: Sub-Minimum Wage Argument

Here’s an argument on the issue of sub-minimum wage I don’t think I’ve heard …

The original rationale for legal payment of “sub-minimum” wages to certain disabled workers was that a subset of “severely” disabled people are not capable of doing work that would ordinarily be valuable enough to justify regular wages. That’s one of the most frequent arguments you hear in defense of the practice to this day.

But business DO pay market prices, (give or take), for what these workers produce in sheltered workshops and similar disabled-only enterprises. So if their collective product is good enough to sell, doesn’t that justify paying all the disabled workers who contributed to making the product or service at least Minimum Wage?

Obviously, this assumes a kind of collective earning of wages that isn’t the way we do things in the US, or in most modern economies. We pay each individual based on their individual jobs and quality of work, (in theory if not always perfectly in practice), not on how well the business as a whole performs. But then we’re already doing something different with a class of disabled people … paying them less than Minimum Wage. Why not address their supposed impairments by paying each person a proper wage for whatever work they contribute to a saleable product?

I should also note that this argument only works for people who really do want the best for disabled people, but lack the language or imagination to envision anything better than sub-minimum wage and sheltered workshops. People who positively like, support, and profit from these models because they make cheap labor legal ... are beyond persuasion.

Disability Blogger Linkup - June, 2018

Welcome to the Disability Blogger Linkup! If you are new to this, click here to see previous Disability Blogger Link-Ups.

The idea is to share something you have written that's about disability in some way. Please be sure to link to the specific article or post, not just the main page of the website it's on. Also, to make the links easier for visitors to identify, in the “Your name” blank, type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it! If you have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, July 13, 2018.

Monthly Reading List - Read Positive Edition

Since I tend to gravitate naturally towards the pessimistic / fighting injustice side of disability culture, I’m trying to make an effort to balance my this out with stuff that makes me feel good and optimistic in a substantive way. So this month I am highlighting five articles on disability from May that can be roughly categorized as “positive.” That is, they don’t focus mainly on either personal or systemic ableism, while also avoiding excessive or superficial sentimentality.

Hear Me Out: Being Inspired By Disabled People Isn’t Always a Bad Thing
Hannah Soyer, Rooted In Rights - May 1, 2018

This is a good place to start ... a reexamination of our common discomfort and disapproval of portraying disabled people as “inspirational.” Maybe we need to reclaim the word. It doesn’t always have to mean cheap sentimentalism, especially when we as disabled people are inspired by one another.

Reframed: Quad Hands
Reveca Torres, New Mobility - May 1, 2018

There is still a place for light, self-deprecating humor in disability culture. It might actually be more important right now than ever before.

Getty is trying to bring disability inclusion to stock photos
Eillie Anzilotti, Fast Company - May 17, 2018

Adding more disability images to commercial stock photo collections is a low effort / high impact cultural change that needs to be capitalized on and recognized.

Microsoft to introduce new, disability-friendly Xbox controller
Matt Gerardi, The AV Club - May 17, 2018

This is progress ... even if it is for a rather niche audience. I’m also extra glad to see it covered in a mainstream pop culture publication like “The AV Club.”

Sexuality, Disability and the Journey to Inner Freedom
Gaelynn Lea Tressler, The Mighty - May 19, 2018

About half a weekend was taken up discussing on Twitter the pros and cons of publishing disability pieces in The Mighty, which has a “problematic” reputation in certain segments of disability culture. It was a good conversation, and Gaelynn was really gracious about it. But I also feel a little bad, because her actual article is outstanding. So here it is. Go read it.

Disability Thought Of The Week - What’s The Problem?

The biggest obstacles to the disability community gaining practical political power aren’t our lack of coordination, or the diversity and decentralization of our methods, (though of course these are real issues for us), but rather the huge number of disabled people who still don’t feel any meaningful connection with other disabled people, and who still don’t think disability has any meaningful or legitimate connection to politics.

Modest Goals

“Disability Awareness.” For some it’s a blanket term covering all the aspirations disabled people have for social acceptance and having our needs accommodated. For others, it’s hopelessly vague, and in practice, meaningless. For a long time, I haven’t had much use for disability “awareness” myself, until just recently.

As disability activists have struggled to pass key legislation and defend the imperfect supports disabled people already have. Disability culture strives for full representation and a wholesale redefinition of disability. Meanwhile, I have started to feel like it might be useful to rethink the basics. We have pretty good ideas of where we want laws and institutions to be regarding disability in society, but achieving those goals seems like a tall order. Is there a more basic set of goals we can achieve on a person-to-person level? Should we aim a bit lower in the short term, and adjust our expectations with people … non-disabled and some disabled people too … who aren’t quite equipped yet to deal with the ambitiously ideal world we are working towards? If expecting people to get it all perfectly right with us is correct but unrealistic right now, what can we reasonably expect?

The more I think about it, the more convinced I am that any actual goals we have for “disability awareness” need to be modest, at least for the foreseeable future. That seems logical, if a little bit uninspired.

So what, exactly, are some modest, realistic goals? What can and should we hold people to, (even perfect strangers and disability newbies), with confidence and assertiveness, and without having to put them through a ten-part disability seminar?

1. Understand and accept that some forms of praise and sentimentality make us uncomfortable. Of course you mean it in the kindest, most positive way. Most of us like specific praise for the work we have done, or our objective accomplishments and efforts. But random praise from strangers and casual acquaintances, simply for living and functioning, usually make us feel awkward. It's a little like being gushed over by the teacher in front of the whole class. And almost none of us likes it when people talk to us with that sweet, saccharine voice normally reserved for infants and adorable pets.

2. Know that disabled people, to varying degrees, have to deal with discrimination that can be personally annoying, but also sometimes life-altering and life-threatening. We call it “ableism,” and though the word may be new to you … and maybe sounds a little contrived … it describes a real thing with real-life consequences. We don’t all experience it in the same way, or to the same degree, but all of us do experience it.

3. Recognize that disabled people are under a lot of social pressure to be cheerful and uncomplaining ... brave soldiers and inspirational examples to others. That means that reacting to disabled person’s personality and tone is more complicated than simply liking and praising disabled people who are sweet, and disliking or disapproving of disabled people who seem grouchy and dissatisfied. If we are hard to live with sometimes, we often have reason to be. And when we are unending rays of sunshine, that can sometimes hide how things really are for us.

4. Unless you are in a specific official position that explicitly requires you to determine somebody’s disability, you should just believe what people say about their disabilities. Anyone can be a liar or self-deluded, but it's particularly obnoxious for disabled people to be constantly doubted and questioned by random people for no good reason.

5. No, we haven’t fully decided what to call ourselves. At the moment, there seems to be a tie between “person with a disability,” and “disabled person.” The best thing for non-disabled people to do in most situations is accept what each of us chooses for our preferred terminology, and leave it at that.

6. If you’re non-disabled, don’t try to “educate” a disabled person about disability. It may be well-meaning, and you my well be right, but it’s presumptuous in a very personal and fundamental way to try to explain our disabilities to us. In fact, even if you are disabled yourself, be very careful and humble about “correcting” another disabled person's views about disability.

None of this is beyond an ordinary person’s ability to understand, or at least practice in everyday interactions. It doesn’t require a background in sociology. You don’t have to be politically progressive. And you don’t have to have a disability, or have a disabled person in your family. At the bottom of each of these goals is a simple thing that may require some effort and the occasional reminder, but needs little in the way of knowledge or education: Treat disabled people as people with agency, unique stories, and human perspectives of their own. And then act accordingly.

It's not too much to ask.

Disability Thought Of The Week: More On Advocacy and Activism

I’m going to try to write a blog post later this week on something I have been thinking about a lot lately.

My thought, which I am trying to tease out and shape, is that what is usually called “self advocacy” and what is generally understood to be “disability activism” are of course related, but call for very different strategies. Approaches that can be smart, ethical, and effective for self-advocacy in your personal life are not always right or successful for larger-scale systemic advocacy on disability issues. And vice versa, maybe. I hinted at this in a post from last month, but I want to explore it in more depth, with more specifics.

I hope to have more to say on Friday, or maybe the weekend. In the meantime, feel free to use the comments to suggest examples.

Disability Blogger Linkup - May, 2018

Welcome to the Disability Blogger Linkup! If you are new to this, click here to see previous Disability Blogger Link-Ups.

The idea is to share something you have written that's about disability in some way. Please be sure to link to the specific article or post, not just the main page of the website it's on. Also, to make the links easier for visitors to identify, in the “Your name” blank, type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it! If you have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, June 8, 2018.

Monthly Reading List - Autism Acceptance Month Edition

April was “Autism Awareness Month.” Or, as a great many autistic people prefer to call it, “Autism Acceptance Month.”

I’m not sure why I’m so interested in the intense debates about autism. As far as I know, I’m not autistic. Maybe I’m fascinated because the conflict over what autism is, how much of a problem it is, what kind of problem it is, for whom, and indeed whether it even IS a problem … reflects similar but less sharply defined issues in the disability community as a whole.

In any case, my reading list for April is all about autism …

The CDC just announced one in 59 children are autistic. Here’s why that’s not evidence of an epidemic
Ari Ne'eman, Vox.com - April 30, 2018

Ari Ne'eman clarifies the question of whether autism is an "epidemic." For one thing, it isn't because it isn't a disease ... although whether it is a disability still seems somewhat debatable, even among autistic people. What Ari focuses on here though is that it's not an epidemic because it isn't actually increasing. What's increasing is the number of people diagnosed and recognized as being autistic. One of the central arguments of the "neurodiversity" view of autism is that people have always been autistic at something like these rates. It's just that they weren't identified as such.

Welcome To The Autistic Community
Autistic Self Advocacy Network - February 14, 2018

An implicit reply to neurodiversity is, "Then what are we supposed to do about / for autistic people?" This handbook, by the Autistic Self Advocacy Network goes a long way towards answering that question, addressing autistic people directly.

Real Autism
Sarah Kurchack, Hazlitt - April 9, 2018

Sarah unpacks her personal experience with what seems to be another of the key conflicts over autism ... how differing definitions of autism include and exclude people who have been diagnosed as autistic, and experience definite characteristics of autism. It's hard to even discuss this without alluding to high and low "functioning" labels, because that seems to be what it's all about ... the perception that if an autistic person doesn't presently display a list of stereotypical "behaviors," then they aren't "really" autistic. It's a variation on the "No true Scotsman" fallacy, and it's enough to make anyone's head spin if they try to unwind it.

Meltdowns Over Meltdowns
Kerima Cevik, The Autism Wars

This is a very real and realistic examination of what "meltdowns" are, how they are regarded, how parents of autistic kids respond to them, and ... maybe most importantly ... how overlapping stereotypes and prejudices of autism, gender, age, and race can compound the impact and danger for autistic people.

15 Autistic Activists You Should Follow This Autism Acceptance Month
Alaina Leary, Rooted In Rights - April 26, 2018

The best way to get a variety of perspectives on autism ... other than usual "mysterious affliction," "parental nightmare," and "public health epidemic" versions ... is to see what autistic people have to say about autism. This piece is a good place to start.