Disabled People Explained: Why we say we don’t want to be cured

Few ideas are as important to disabled people, and so widely misunderstood, as the assertion, “We don’t want to be cured!”

To many, if not most non-disabled people … and quite a few disabled people too … this seems bizarre. Either there’s something wrong with us that we feel this way, or we like the "special" feeling and privileges disability supposedly gives us, or it’s a lie we tell for some political or rhetorical purpose ... maybe to pump up the disability community or focus attention our material goals.

Two stick figures with overlapping speech balloons over their heads

So do we really mean it when we say we don’t want to be cured?

Yes, Sort of.

First of all, for some of us it’s a hard “Yes!” We literally do not want to be “cured." We don’t want our disabilities “fixed.” If a magic pill was available and affordable, we wouldn’t take it.

But I think for most of us, the feeling is genuine, but not quite as specific as the words suggest. Most of the time when we say we don’t want a cure, we mean that we are so used to our disabilities that we have a hard time imagining ourselves after a purely hypothetical cure. Many of us would appreciate some specific improvements or relief in certain aspects of our disabilities, such as less pain, more stamina, or maybe a fix for one particular impairment that would be nice to leave behind, even if other impairments remained. But we can’t really even guess who we would be without our underlying conditions.

I would love to be able to breathe better than I do. But I can’t fathom who I would be, what kind of life and even personality I would have, if I were 6 feet tall instead of 4, or didn’t have a deeply curved spine, or had a thicker, more solid, stronger physique. Besides, my disabilities aren’t the kind you can really cure, or even imagine curing. For me, a cure would have to entail more than repairing a malfunctioning part. It would be more like complete replacement of myself, and that's a weird thing to think about, much less wish for.

It's not like that for all disabled people. People who have been recently disabled, or who have very specific and isolated impairments, often feel that their disabilities really are just unwanted breakdowns that should be fixable. Many have pre-disability selves that are vividly remembered. That complicates the idea of disability being an integral part of themselves. Disabilities that come with age, or from disease or accident, sometimes don't feel like something you live with and embrace, at least not right away. And it should be noted that chronic pain and illness straddles the line between disability and sickness in ways that make these discussions of cure and improvement even more complicated.

Over time though, even people who on some level think about a cure tend gradually to adjust their self-image, so that while a cure may in some ways still feel desirable, the ramifications of it become harder to map out. That alone makes talk of cures, recovery, and even "overcoming" disability far more messy than it tends to be in popular rhetoric.

Finally, most of us have many more immediate things to think about, like whether a stranger will ask us a rude question in the line to get coffee, where and when we'll be able to go to the bathroom, or whether an extra hour of work or an extra $20 in earnings will causesus to lose hundreds of dollars in benefits, maybe our health insurance too.

So when the topic of a “someday” miracle cure comes up, or is shoved in our faces as the only sensible feeling to have about disability, we tend to say something along the lines of: “I don’t want to be cured!”

When you think about it, it’s really not that weird.

Bad Ideas About Disability

Photo of a yellow diamond road sign reading BAD IDEA

I spent some time this morning in an exasperating Twitter discussion about disability terminology. A man started off angrily objecting to the #CripTheVote hashtag for being offensive, and quickly moved on to rejecting almost every common disability term ... including simply “disability” ... as out of date, offensive, negative, etc. The only thing remotely like a workable terminology he would accept was “special needs,” which made some sense since he said he was an educator. I should also point out that the man said he is hearing impaired, which gives his opinion on the subject some authentic credence.

Soon the conversation between him and about 5 other disabled folks boiled down to an absolutely ironclad, and in his view moral belief that “disability” itself doesn’t exist, since everyone has unique abilities and disabilities. I think I am paraphrasing him more or less accurately.

Both views ... about disability terms and about disability itself ... are familiar to me. Both are generally well-intentioned ideas put forward by people who sincerely believe they have a progressive understanding of disability. However, both are also, in fundamental ways, regarded as bad ideas by significant portions of the disability community.

This particular man happened to be extremely obnoxious and condescending, but in a way that is beside the point. He was being obnoxious about ideas that at least some polite and fair-minded people also sometimes advocate. The discussion has prompted me to start working on a new series of blog posts on the most prominent and influential bad ideas about disability.

I don’t mean bad behavior, intentionally offensive language, or simple ignorance. I won’t be citing “ableism” as one of those bad ideas, because it’s much too broad. I won’t include random theories tossed off by someone in the course of a freewheeling conversation. I’m talking about relatively specific, well-intentioned, carefully thought out, and widely circulated ideas about disability that are, unfortunately, bad.

And what do I mean by bad? Since I want to steer clear of categorical judgements like right or wrong, accurate or inaccurate, I’ll count a disability idea as “bad” if it meets one or more of the following criteria:

  • It makes a sizable percentage of actual disabled people angry or uncomfortable.
  • It fails to accomplish its intended purpose.
  • It tends to lead people ... intentionally or unintentionally ... towards behavior that is harmful to disabled people.

I’m not quite ready to dive in full force on this series. I plan to take my time with it. So over the next few months, my tentative plan is to explore these three bad ideas about disability:

1. Using euphemisms for disability ... (e.g., differently-abled or special needs)

2. Espousing the idea that disability doesn’t really exist.

3. Asserting that there is a limit to the amount of support and accommodation disabled people should expect from society.

If you want to nominate another bad idea about disability, along these lines, feel free to leave a note in the comments.

YouTube Vlog Idea

"Vlog" logo on a mixed dark and light blue background

Back in April, I wrote that I would be working on something new for Disability Thinking, possibly a vlog … a series of video pieces on YouTube. I’m still working on the format, but I think I have an idea to give the thing structure.

The tentative plan is to make short 15-20 minute videos that discuss one or two terms related to disability and disability culture, starting with words that start with an “A” and going through the whole alphabet all the way to “Z”. I would plan to share my own thoughts on each term, and probably invite viewers to send in comments ahead of time that can be shared. I did some brainstorming on terms, and here is what I have so far:

A    Ableism, Accessibility, Advocacy
B    _________________________
C    Crip, Chronic Pain, Chronic Illness
D    Disabled, Differently-Abled, Discrimination
E    Erasure, Eugenics
F    Functioning Labels
G    Guide Dog
H    Handicapped
I     Inspiration Porn, Independent Living, Intersectional
J    _________________________
K    _________________________
L    Long Term Care
M    Medical Model, Marginalized
N    Neurodiversity
O    Oppression, Opioids
P    Prejudice
Q    Quad Rugby
R    Representation
S    Self Advocate, Social Model, Special Needs
T    _________________________
U    Undue Burden, Universal Design
V    Vocational Rehabilitation
W    Wheelchairs, Willowbrook, White Cane
X    _________________________
Y    _________________________
Z    _________________________

I’d welcome any suggestions to fill in the alphabet. If it’s any good at all … meaning if anyone watches and listens … I would also consider some special programs for Patreon subscribers … such as Q&As and guest interviews.

Obviously I’m still working on this, but I hope to post something on actual introductory video on YouTube sometime before the end of this Summer.

Analogy

Disability Thought of the Week on a yellow lined notepad background

*Sigh* This started out as a nice, brief analogy. Then it grew to take into account more and more aspects of the disability community and it’s relation to the rest of society. Anyway, here it is. What do you think?

=====

This is the disability community ...

100 people are packed into a leaking rowboat, with the water half an inch away from spilling over into the boat.

1/4 of them are trying to transfer to a couple of newer, safer-looking boats visible nearby.

Another 1/4 are trying to get ashore, which is further away, but it’s where all their friends and family are.

Another 1/4 are trying to get everyone else in the boat to sit still, out of fear the boat will capsize and drown everyone immediately.

The last 1/4 insist there’s nothing wrong with the boat at all that can’t be overcome with hard work and a positive mental attitude.

Ten of the people in the boat keep wondering aloud why another ten are even there, since they clearly don't really belong on the boat.

About 1/3 of everyone in the boat is wearing life vests, so their chosen responses to the situation are sincere, but mainly philosophical and less personally urgent. About half of the life vests actually have holes in them, but the wearers don’t realize it.

All around on the shore are spectators who are either encouraging the people in the boat ... offering sometimes helpful, sometimes contradictory, sometimes obvious advice ... or discussing among themselves which of the people in the boat are inspirational, and which are negative and counterproductive.

A few people are swimming out from the shore to help. Although they all mean well, about half of them will probably drown themselves, taking a boat passenger or two with them.

Disability Thought Of The Week: Toughness & Vulnerability

Icon of a white silhouette head with a word cloud inside containing words associated with disability thinking, against a light blue background

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).

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.

Modest Goals

Picture of an ice hockey goal net

“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.

Starting Somewhere

Photo of the start lane of a running track

Have you seen this yet? Watch it now ... (TW for heavy drinking and bleeped profanity):

Honestly, I didn’t come up with this topic just as an excuse to post and talk about this amazing Drunk History video about an important event in disability history, the Section 504 sit-in. As it happens, I have been thinking a lot lately about an often heard phrase in disability advocacy, “You have to start somewhere!” Then this skit aired on Tuesday it seemed to me like a perfect answer to why the phrase ... though technically true ... has become so irritating.

“You have to start somewhere” shows up a lot in disability activism and culture discussions in which one group of observers complain that a disability-themed movie, TV show, advertisement, inclusion activity, or awareness campaign isn’t good enough, and another group defends it because although it’s not perfect, “You have to start somewhere!” Basically, it’s about different factions within the broader disability community calibrating progress in very different ways. What’s groundbreaking for some is often old hat or even retrograde for others.

This problem relates to more concrete matters, too. Last week, the U.S. House of Representatives passed H.R. 620, a bill that would institute additional waiting and grace periods for businesses to comply with the Americans with Disabilities Act. One of the underlying premises of the bill is the notion that the ADA and accessibility standards are in some sense new, unusual things that business owners can’t be expected to know about by themselves. They need advance notice that they might be out of compliance, and then extra time to figure out what they need to fix it. They shouldn’t be punished for not having their act together on these newfangled regulations.

That’s where the Drunk History skit comes in.

The 504 sit-in was specifically about accessibility, non-discrimination, and creating a more modern, progressive cultural understanding of disability. And it took place in 1977 … 41 years ago. Now, I’m just old enough to have lived as a disabled person in a time when the ADA, disability rights, and cultural representation of disability were actually new things. In the late ‘80s and early ‘90s, we were, in truth, “starting somewhere.” But we can’t still be “starting somewhere” 41 years later, can we? Obviously, progress takes time. It took another 13 years after the 504 sit-in for the ADA to pass. But at some point, doesn’t the clock sort of run out on what’s considered “new” and “just starting?” Doesn’t the simple passage of time suggest that we eventually should expect a better understanding of disability to be widely shared and integrated into the fabric of “stuff people just know?” This then allows us to move ahead to the next steps, and the steps after those.

I think one problem is that a segment of the disability community always views disability matters of all kinds as “new,” because a portion of the disability community is always going to be made up of newly disabled people and families of newly disabled people. It’s all legitimately new to them. That’s understandable. But eventually, it has to stop being new, even for newcomers. And knowing the actual history of these movements and ideas is key, because each new generation of disabled people is not, in fact, the first to experience disability or think up the idea of disability rights. It may seem that way to some of us, but that’s what looking around you, talking to other disabled people, and looking up a bit of history is all about.

It’s amazing that of all things, “Drunk History” has given us such a great opportunity to remind ourselves that the disability rights movement is well past “starting somewhere.”

Who's Disabled?

Who's Disabled in bold white letters on a dark aqua blue background

People sometimes ask, "Is it okay for me to say I'm disabled?" What do they mean? A variety of things, I think:

• They have some condition that's in the ballpark of disability, but they have struggled personally over whether they themselves want to identify as disabled.

• They view themselves as disabled in some way, but worry that other disabled people won't accept that, or that they will be accused of "appropriating" disability identity and culture.

• They think that if they refer to themselves as "disabled", their friends and families will be sad or disapprove, or worse ... believe they are faking in order to gain some kind of advantage or benefit.

• They are focused on one of the more narrow, specific definitions of "disabled," such as qualifying for Social Security Disability, being entitled to a "handicapped parking" permit, or being covered under the Americans with Disabilities Act.

• They take the word "disabled" very literally, to mean unable to do anything. From this point of view it can seem both inaccurate, (everybody can do SOMETHING), and discouraging ... as if calling yourself disabled is not only descriptive, but predictive.

I've thought about it a lot, and here is the definition of disability that makes the most sense to me. It's a personal definition, not a legal or bureaucratic one:

If you have a physical or mental condition that you have to think about and plan around every day, then you are disabled.

This definition encompasses any physical, mental, cognitive, and sensory impairments. I personally don't include temporary impairments, impairments that are seamlessly adapted, (like glasses for nearsightedness), or ordinary variations in personality, talent, and physical makeup.

Any thoughts?

Disability Communities ... Followup

Disability Communities (Plural)

Last month, I blogged about the idea that there are actually several different "Disability Communities," based on the major different approaches disabled people have to their disabilities. In that post, I proposed 5 of these communities or approaches, something like this list:

Activism
Culture
Achievement
Assimilation
Cure

Note: I have decided to rename "Bootstrapping" and call it Achievement instead, because "bootstrapping" is a little too dismissive or judgmental. I am also simplifying "Cure Questers" to just plain Cure.

Let's look at these categories in a little more detail:

Activism - Examples:

◎ Personal participation in activism
◎ Problems of disability are mainly social and structural, and therefore correctable
◎ Activism is a valuable and important way of addressing disability issues
◎ Disability activism is urgent, exciting, empowering
◎ Hope for better future through better disability policies & services

Culture - Examples:

◎ Regularly use and/or produce disability-oriented media
◎ Enjoy discussing & exploring disability as a social identity
◎ Disability is a culture, a personal and collective social identity
◎ Disability identity is a source of personal & collective pride
◎ Hope for better future by combating ableism and promoting disability pride

Achievement - Examples:

◎ Focus on self-improvement, education, training
◎ Focus on getting a good job
◎ Pursuit of maximum achievable financial independence
◎ Value maximum achievable practical independence, self-determination
◎ Hope for better future by personal achievement and proving disabled peoples' capability

Assimilation - Examples:

◎ Goal of achieving mainstream social acceptance
◎ Social acceptance is signaled by others ignoring or looking past disability
◎ The ideal is a "normal life" in which disability is insignificant
◎ Disability is an inconvenience, a challenge, an obstacle ... not really an identity
◎ Hope for better future by making non-disabled feel at ease with disabled people

Cure - Examples:

◎ Goal of curing or substantially reducing your disability
◎ Disability is mainly a personal health and fitness issue
◎ Activism focused on medical treatment or prevention of specific disabilities
◎ Fundamentally dissatisfied with having disabilities
◎ Hope for better future by preventing disabilities

The original post was just table setting for a bigger point, which is that I believe most disabled people are unique blends of these approaches. Mapping out how each of us invests in these approaches can reveal a lot about what kinds of disabled people we are. At the same time, I think it can also help make sense of the frequently huge differences and divisions in the disability community as a whole.

I'll start with myself.

I wanted to make some kind of graph or chart to illustrate where my own disability thinking sits among these different approaches to disability. So, I gave myself 10 "points" to distribute among the five approaches ... the more heavily invested I believe that I am in each category, the more points I allocate to it. Here is what I came up with:

Activism: 4 - My main interest is in activism, and my overall view of disability is that the key to better life for disabled people is better disability policy. Also, I tend to like disability activists, and discussing and campaigning for disability issues is stimulating and exciting to me.

Culture: 3 - I am also interested in, and a small producer of disability culture. I absolutely believe that disability is an identity and that there is a real disability culture. However, this interest is still rather new to me, and I still occasionally find myself feeling skeptical of the importance some of my friends and colleagues attach to issues of identity, language, and representation.

Achievement: 2 - I care about my own success, not just as a person, but as a disabled person who can be an example to others. At the same time, the brand of disability activism that centers on conventional markers of success leaves me cold. In the end, I don't really think that a few splashy individual triumphs does much to change the social status of disabled people in general.

Assimilation: 1 - I care a great deal about having freedom, access, and formal integration, but I'm not that interested in whether I am fully assimilated and viewed as "just another guy" by non-disabled people. This is partly because I don't think that totally blending in is really possible for me, and partly because I've always been a bit of a loner, happy to be set a little apart from the crowd, whether or not it's because of my disability.

Cure: 0 - There is no medically or practically meaningful cure or therapy imaginable for my particular disabilities, which is probably why I have never been the least bit interested in such a thing. Meanwhile, there are things that can and should be done in society, things we already know how to do, that would make life better for disabled people.

Communities Chart.jpg

And here's a graphic representation of all that:

What would your chart look like?

Next month, I plan on finishing this three-part series of posts by using this formula of sorts to look at how my profile has changed over the years, from my youth, to young adulthood, to the present day me. I may also try to chart out some other kinds of disabled people and disability organizations that have very different profiles, and emphasize very different approaches to disability.

Observations:

My instinct is that the majority of disabled people are mostly invested in a combination of Achievement and Assimilation, with a bit left over for Activism and Cure in specific circumstances ... such as the threatened loss of health care (Activism), or the prospect of significant pain relief from surgery or medication (Cure).

I would guess that the overall investment in Culture has grown a lot just in the last 10 years or so. Until recently, appreciation of disability culture was almost entirely restricted to people with a background in academic cultural theory, the kind of mindset and analytical skills you pick up in the liberal arts college experience. However, I think that social media has created much more direct, intuitive, and accessible entry points, opening up interest and participation in disability culture to a much wider audience.

For a long time, the Achievement approach to disability was synonymous with Activism. The goal of disability activism was almost entirely about ensuring equal access to education, employment, and participation in conventional middle class American life. This is changing. Disability activism is more ideological now, (not necessarily a bad thing!), more engaged in existential issues ... like long term care and eugenics ... and just a little less with public school inclusion and employment rates. These are still important, but no longer exclusive, unquestioned goals.

The most broadly shared, easy to understand approach is probably Assimilation. It's the one approach most evenly shared by disabled AND non-disabled people. It's message ... "Just treat me like everyone else," is simple and relatable. It has for a long time also been considered the most easily accomplished. However, in recent years, the disability community has become more skeptical of the prospect of achieving true assimilation and social acceptance. Also, some question the value of assimilation itself, as wholehearted embrace of disability culture becomes a more viable, fulfilling alternative.

This rubric of 5 approaches or communities seems like an especially good way of clarifying the fundamental differences between disability organizations as well as individuals. Those of us engaged with the disability community can probably identify by name organizations that exemplify Activism, Achievement, Assimilation, and Cure. Oddly, I can't think of a disability organization that belongs squarely in the Culture approach and community. Am I missing something, or is this actually an open slot for some new disability organizations that don't yet exist?

As always, your questions, thoughts, and critiques are most welcomed. And if you feel like sharing how you see yourself in relation to these approaches, do share!