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:
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.
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.
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!