Define Me

What do people mean when they praise certain disabled people for "not letting their disabilities define them?" I think it usually means one or more of several things:

- They don't contemplate the "meaning" of their disabilities, either negatively or positively.

- They don't brood much over their disabilities and disability-related problems.

- They don't often talk about their disabilities, or explain their effects in detail.

- They do things that non-disabled people often don't associate with a conventional idea of "being disabled," like working, driving, or doing sports.

- They don't spend much time on disability activism, other than strictly necessary and prudent self-advocacy.

- They don't complain.

- They don't make a fuss.

- They can laugh at themselves and don't take themselves too seriously, especially in regard to their disabilities.

- They try their best not to bore or depress people with their problems.

- They try their best not to let other people feel bad about anything but the most hostile acts of disrespect or discrimination.

So, it seems to me that it isn't just ... or even primarily ... about how we actually think of ourselves. Underneath the expression, not allowing ourselves to be "defined by our disabilities" really means that we take care not to remind other people of our disabilities.

It's about not being a bother and not making people sad.

Now that I've said the biting, assertive thing, there's something else.

In my everyday life, I usually try to do all of these things, at least a little bit. I do not wish to go around confronting people about disability issues all the time. I don't want to be a bore, and I totally understand that to most non-disabled people disability issues are boring. I like being as self-sufficient as I can be. I take at least a little more than the usual pride in doing ordinary things like working, driving, and basically living as an adult.

But ...

Those are my choices. It's the way I want to be at this point in my life. And while I am sure I'm still influenced by social pressure and internalized ableism, I'm comfortable with a degree of conformity in how I deal with the world.

The key is that it’s my decision, and my self-worth doesn’t hinge on any of this. "Not letting your disability define you" becomes a problem when this respectable, "do-bee" formula for acceptance is the only recognized way of being an “admirable” disabled person. That's the hidden tyranny of being expected to not "let our disabilities define us,” because while a bit of normalcy is nice, assertiveness, political consciousness, and a sense of belonging to a community are also enormous mental assets.

So yes, I try not to allow my disabilities to define me in a bad way. I don’t want my disabilities to confine me or my conception of myself. But I gain strength out of realizing that my disabilities obviously do define me in part, no matter what I do. So I might as well embrace it.

Independence Day

I was going to try writing something profound about the U.S. Independence Day and the idea of “independence” in the context of disability. But, I figured I should check to see what I’ve written already on past July Fourths. As it turns out, I wrote two pretty good pieces making this obvious connection. Since I still agree with them, I’ll just post them here, add a few comments, and leave it at that.

Independence
July 4, 2013

Discussions of disability activism have shifted quite a bit since my early days in the movement. We argue more over policy specifics and social identity now than we used to. I also think we are less optimistic than we once were about the power of simple “awareness” to bring about positive change in disabled peoples’ lives. However, among people with disabilities who are not involved in the disability community, or who are just taking their first “steps” into it, this very particular concept of independence is still absolutely key. That has not changed. It’s still almost impossible to move forward, positively, as a disabled person unless you stop clinging to the idea of physical independence and embrace this more conceptual … and meaningful … independence that’s about choice and personal agency.

Independence Checklist
July 4, 2014

A lot of traditional agencies have, finally, left medical, institutional, custodial models behind. Unfortunately, many others have simply gotten more creative about promoting systems whose purpose is still to manage and regulate disabled people’s lives in the most convenient ways possible for those running the programs. So, a checklist like this one is still extremely useful for stripping off the shiny candy coating that now pretties up so many fundamentally unchanged disability programs and facilities. Independence isn’t about choosing what color of socks to wear, whether to go bowling or to a movie, or whether to have chicken or beef for dinner. It is about deciding who you live with, (maybe nobody!), regulating your own space, and being responsible for yourself, even if you need assistance, (maybe lots of it!), to get through each day.

Blog In Progress: A Third Model of Disability?

I got sidetracked today because my oxygen concentrator gave out and I had to get it replaced. I had hoped to post a full piece today about an idea that occurred to me last week while reading David Perry’s article on Pope Francis’ mass focused on people with disabilities. I am working on it though. It’s about the idea of adding a third “model” to the Medical Model and Social Model, which are two of the main ways we classify different ways of thinking about disability.

The third model would be called something like the Spiritual Model, and would help explain a view of disability that focuses on a sense of deeper meaning in disability … whether traditionally religious or a more secular philosophical or New Age / self-help view. It might even help account for "inspiration porn." So far, I’ve gotten far enough to describe the three models of disability thinking as three different kinds of questions:

1. The Medical Model asks, “What’s wrong with me, and how much of it can we fix?”

2. The Social Model asks, “What’s wrong with how society, government, and organizations deal with disability, and how can we fix them?”

and adding …

3. The Spiritual Model asks, “What does disability mean, spiritually and philosophically, to me and to the rest of society?”

I would be happy to include anyone else’s thoughts and comments or thoughts on this in a more thorough blog post to come. I’d especially appreciate knowing about other people who may have already written about something like this.

Add your comments and suggestions for further reading in the comments below.

#CripTheVote: Notes On “Crip”

While #CripTheVote has gotten a lot of disabled people excited about participating in this year’s elections, a few folks have questioned our decision to make “crip” a key component of the hashtag. Since the complaints and concerns have been mostly expressed carefully, thoughtfully, and with respect, we feel it makes sense to explain ourselves a bit further, for those who might be interested.

Here is our thinking:

- Selective use of “crip” or “crippled” by people with disabilities is a conscious act of empowerment through “reclaiming” a former slur as a badge of pride. “Selected use” means we don’t use it all the time, in every situation. We exercise judgment in when and where it’s appropriate to use.

- “Crip” and “cripple” are also used ironically, to convey a bit of edginess, humor, and confidence, from a community that people tend to assume will be sad, bitter, and boring.

- Disabled people who identify with “crip” or “cripple,” generally share a strong sense of disability pride and deep involvement in disability activism and culture. We know what the social model of disability is, we are familiar with “person first” language, and we take pride in our disability identities. Calling ourselves “cripples” isn’t a sign of self-hatred or ignorance of disability history … quite the contrary.  

- “Crip” and “cripple” have been used this way by at least some disability activists for decades. It’s not a particularly new practice. It has, however, grown to be more inclusive, as the disability rights movement itself has gradually become more inclusive, both of people with all kinds of disabilities, and of people who have other important identities.

- “Cripple” as an actual label or insult is not just “politically incorrect,” it is archaic. It is a term from a bygone era, largely out of use even by ableists. That is not true of all negative disability terms. For instance, “handicapped” and “retarded” are both used much more often, and are therefore more risky to play around with than “cripple.” That’s why you won’t find many disability activists and proud disabled people using “handicapped” or “retarded” either as reclaimed terms or ironically.

- We chose to use #CripTheVote because it sounded more interesting, hard-edged, and likely to spark interest than safer, more “accurate” terms. It’s the difference between saying, “Rock The Vote!” and saying “Young People Really Should Register And Vote.”

- All that said, using “Crip” or “Cripple” this way isn’t to everyone’s taste. That’s fine. Some people have painful personal histories with the word. Some people despise irony and don’t like messing around with language. Some people feel it’s just too risky.

-We are not speaking for everyone, especially the disability community. We believe there is room for multiple hashtags and conversations--there’s something for everyone.

- However, context does matter, and if you read through the tweets that have come out of the #CripTheVote hashtag, you will see that is has inspired the very opposite of ignorance, stigma, or medical model paternalism.

- For a deeper look into the issue, read Crip Theory, from Wright State University.

Thinking Today

When I was first starting out in disability rights as a summer employee at an Independent Living Center in 1990, I read a monograph by someone in the Independent Living / Disability Rights field on whether or not IL philosophy really worked for people with intellectual disabilities. Ultimately, the answer in the piece was, “Yes, of course!”

However, the way it was written made it very clear that it was still very much an open question whether IL principles were applicable for people with intellectual disabilities. I think about that a lot when I see debates and flame wars between disability rights activists and some parents of disabled kids, as well as some professionals in the “developmental disability” field. The movement itself is pretty much settled on the idea that people with all kinds of disabilities have basic rights, that all should be assumed to have personal agency, and that everyone can and should be able to exercise meaningful choice in their lives, even if they need support to do so.

On the other hand, I think it’s important for those of us who believe this to revisit the question once in awhile, because lots of people still assume that mental and intellectual disabilities are completely different from physical disabilities. Many, many people … including some people with disabilities … really don’t see paraplegics, blind people, autistic people, and people with Down Syndrome as part of the same community at all. And it’s not just a personal hangup or fear of stigma. Some people really believe that applying the same fundamental rights and guiding principles to all of us doesn’t make sense. It's one of the reasons you see parents saying that an activist in a wheelchair can't have valid insights into the life and problems of a severely disabled, nonverbal, or "low functioning" person. That's wrong. It rightly shocks and offends us. But we should at least keep in touch with why people think that way, and not just condemn them out of hand.

Disability 101

I have decided to make next weekend’s Disability Blogger Link-Up more specialized than usual. I am going to ask people to submit only articles, blog posts, videos, or other linkable content that can serve as effective introductions to disability culture and activism.

This video is a good example:

I first saw this video explaining the "Social Model of Disability" in a blog post that happens to provide an excellent introduction to why we use and embrace the word “disabled” instead of the many euphemisms that pass … mistakenly I think … for “politically correct.” It’s another example of this Disability 101 idea.

#SayTheWord, Not “Special Needs”
eisforerin.com - February 16. 2016

So please do think about and collect pieces you think are good, plain-language introductions to the key concepts we deal with in the disability community. It might be stuff you processed years ago, things that are incredibly obvious to you, but that are real mysteries to others, including to many disabled people who are only just starting to realize they are part of a community.

Collect your favorite pieces, and get ready to post them to next weekend’s Disability Blogger Linkup. I can’t wait to see what kind of amazing reading list we can build!

Old Video, Fresh Ideas

22 years in Independent Living and I never saw this video about Ed Roberts until yesterday. There’s nothing in it I didn’t know from other sources, but I really feel like I missed out not seeing this much earlier in my Independent Living career.

The video does have a bit of a corporate instructional film feel, but focus on the words, which are as relevant today as they were in the early ‘90s. In fact, I am amazed at how current the content really is. Just update the technology from a “word board” to an iPad, make the music a little more energetic, (or just get rid of it entirely), shoot it in high-res digital, and this could be made today.

Sadly, we don’t have Ed Roberts anymore. He died in 1995. But, there are other people still living who share Ed Roberts’ philosophy and commitment. You might find them working at your nearest Center for Independent Living. If you want to understand what Centers for Independent Living are and what they are supposed to be, this video is an excellent place to start.

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An Important Clarification On Assisted Suicide

NDY Is Not Working in Coalition with the Family Research Council – And Here’s Why

Diane Coleman, Not Dead Yet - January 19, 2015

This statement from the disability rights organization Not Dead Yet was prompted by a specific, “inside baseball” sort of event, but the statement turns out to be a very effective explanation of why many disabled people and disability organizations oppose legalization of assisted suicide and euthanasia. Plus, it underscores crucial differences between disability opposition to these causes and the “right to life” movement.

The disability rights argument against assisted suicide and euthanasia is almost entirely different than the traditional moral / religious arguments against them, and organizations like Not Dead Yet should not be conflated with conservative and religious organizations like the Family Research Council and Right To Life. There is definitely some overlap in regard to policy, but very little in ideology.

The fact that I oppose assisted suicide and euthanasia doesn’t indicate that I’m a right-winger or religious fundamentalist. Far, far from it. By the same token, agreement on this particular policy issue doesn’t mean that religious right groups necessarily understand or really care about the disability rights perspective.

You can see similar clarifications being mapped out right now over Senate Bill 334, which would ban abortion based on disability or gender. I admit, it’s messy. But the distinctions make sense and they are more or less consistent.

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More Ways To Understand Disability

Another way to understand the very different perspectives people have on disability is to think in terms of the three main academic divisions used by most colleges and universities:

Sciences

Social Sciences

Humanities

Just like in universities, these are three equally valid and important perspectives. Which one you choose depends partly on your personality ... what interests and excites you, and what doesn't.

Also, just as in universities, we really should all have a least a basic familiarity with with all three approaches.

How do disability issues fit with this model? Like this, I think:

Sciences:

Medical research

Treatment and prevention

Rehabilitation

Adaptive technology

Social Sciences:

Disability policy

Disability throughout history

Disability as culture and identity

Ableism … disability prejudice and discrimination

Humanities:

Art, music, and writing reflecting the disability experience

The language of disability used by the disability community and broader society

Philosophy, religion, ethics, and disability

How society sees disability … how disabled people define disability identity

Which of these poles of disability thought do you tend to gravitate towards?

What Are We Arguing About?

When you start reading around the disability blogs, as I did a year and a half or so ago, you get the impression that there are some pretty big arguments going on just under the surface of things. People with opposed views on disability topics rarely clash with each other directly, but there are obviously some high-stakes disagreements and misunderstandings sparking a lot of passion. The problem is that the terms of debate are almost never spelled out, and a newcomer to disability culture can become easily confused. What’s it all about?

I don’t want to fan the flames, but it might be useful once in awhile to try to articulate just what it is we are fighting about … or being passive-aggressive about as the case may be.

For example:

- Is disability a complex web of medical, social, and political factors that all affect how people with specific impairments live? Or, is all the social and political stuff a sort of mirage, distracting us from the pain and hardship of unpleasant medical conditions we should be trying to solve? This argument is at its most concentrated when there is a clash between efforts to eliminate certain disabilities entirely, and a view that doing this would be tantamount to genocide. However, a more moderate but similar argument goes on over where people prefer to direct their attention and money … to making life better for disabled people, or to ridding people, and society, of disabilities?

- What is autism? Is it a baffling and often debilitating brain dysfunction that kids and families suffer greatly from? Or, is it a very particular kind of brain and perception difference where autistic people are essentially ok if they’re allowed to be themselves and use their coping mechanisms, but parents and other “neurotypicals” make them miserable by trying to force them to “act normal”? It’s hard to stake out a middle ground here. It feels like one or the other side is not only wrong, but tragically, horrifically wrong. People disagree over the true nature of a few other specific disabilities, but autism seems to be the most divisive.

- Are most intellectually disabled people quite capable and fully self-aware, and just in need of some extra help and guidance to live satisfying lives? Or, are most of them severely impaired and in need of constant, life-long care and supervision? Most people would say some of both, and lots of in-between. But, one side tends to stress a more minimalist, positive view, while the other side focuses more strongly on needs and what they see as serious, insolvable deficits. The two sides seem to be looking at two different groups of people, while speaking as if to encompass them all.

- Are people with substantial care and assistance needs better served in their own homes with visiting nurses and paid personal assistants? Or, do they get better, safer care in specialized care centers like nursing homes and “assisted living facilities”? This argument is inseparable from the question of which model is more financially sustainable. Not to mention … whose needs are paramount, the person with a disability, family, or care providers?

- Which is more crucial to successful life with a disability … positive thinking and good behavior of the disabled person, or accessibility, accommodation, and respect from society, towards the disabled person? How we answer this question seems to depend a lot on which we believe is easier to change … ourselves or society. The answer to that is not obvious, either way.

- Is disability prejudice the result of ignorance or evil, confusion or hostility? Does it make a difference?

If you have read even just a little bit of this blog, and of other blogs by people with disabilities, you should be able to guess how most of us would answer these questions. Yet, they are questions, and the opposite answers are not so easily dismissed, once they are fairly laid out.

I have no grand point here. I just think it’s important that we remind ourselves of what we believe, and of what others believe who disagree with us.