Disability Thought Of The Week: What's Your Major?

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I don’t know how new this idea really is, but it feels new and kind of fresh to me. Another way to describe the different ways people approach disability is to use a college major analogy. The way I see it, the main approaches to disability break down like this:

Biology

Disability is about physical and mental conditions, symptoms, diagnoses, treatment, rehabilitation, adaptation, prevention, and cures. It’s about how our bodies and / or our minds are different, and how we can cope with that, or make them less different. It's about fixing what's wrong.

Psychology

Disability is about self image, education, social skills, internalized ableism, empowerment, and disability prejudice. It’s about how each of us processes our disabilities, the way people treat us, and how we present ourselves and deal with the people around us in relation to our disabilities. It's about understanding ourselves and what disability means to us as individuals.

Sociology

Disability is about institutional ableism, accessibility, disability culture and identity, and disability history. It’s about how society and culture creates, uses and modifies the category of disability, and how we can deal with that and redefine disability on our own terms, together, as a group. It's about understanding disability as a social phenomenon.

Political Science

Disability is about activism, coalition-building, and disability policy. It’s about making everyday life better … maybe a lot better … for disabled people through deliberate and specific policies, through concrete things we know how to do, if we can muster enough political will. It's about using political action to make things better.

Everybody with disabilities, and everyone with any reason to think about disability, “majors” in one of these approaches, sometimes with a minor to go with it. The thing is, having disabilities is about ALL of these things. The differences among us are about which aspects of disabilities we understand best, which affect us most day to day, and which we are most interested in thinking and talking about.

And, like so many college students, sometimes we switch majors over time. What’s your major? What was it when you were young, or when you first experienced disability? Has your disability major changed?

Disability Thought Of The Week: Patience

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Have you ever heard or read a quote that perfectly articulates an important thought or idea, even though the quote itself is totally unrelated? That happened to me yesterday while I was watching an episode of Buffy the Vampire Slayer:

“I was being patient, but it took too long.”

— Anya, Buffy The Vampire Slayer, Season 6, Episode 1

Still image of the character Anya from Buffy The Vampire Slayer

The joke is that Anya is a former demon who is new to being human, and therefore doesn’t know how to be polite. She has these powerful needs and wants, but few restraints on her behavior. So people are always telling her to calm down or be patient. The idea inside of that joke is that Anya is, accidentally, often very sensible and direct, where her “normal” friends are sometimes overly concerned with etiquette and caution.

By one standard, Anya is tactless and childish. By another, she is refreshingly logical and direct.

I instantly thought of how disabled people feel about being patient, especially on the issue of accessibility. As thousands of disability activists have said over the last several years, the Americans with Disabilities Act is not a new law. It hasn’t been any kind of "new" for at least a decade. Yet, we are still told, or it is heavily implied, that the proper, reasonable attitude we should have about our full legal rights being respected is patience. It takes time to comply. It takes time to change attitudes. It takes time to retrofit old buildings and neighborhoods.

The ADA passed in 1990. We have been patient, as Anya would say. But it has taken too long.

P.S.: Here's another "Buffy" themed blog post from 2015: Disabled Youth & Vampire Slayers.

Disability Thought Of The Week: Judging Activisms

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Can We Stop Arguing About the “Right Way” to Be a Disability Activist?
Andrew Pulrang, Rooted In Rights - May 4, 2018

People seem to like this piece I wrote for Rooted In Rights. TL;DLR … We should stop judging others, and ourselves, for which modes of disability activism they / we choose.

I may write what would probably be a more controversial followup on how we think about the content of disability activism, as distinct from methods. Should we be as open and accepting of all disability activism goals as we are of how and where to pursue them? What do we do when a disabled person does disability activism activities in pursuit of, say, medical research, or a personal advocacy goal, or to keep a sheltered workshop open? Does it matter what “we” think?

Disability Thought Of The Week: Disgust

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While meeting with the U.S. Winter Paralympic Team, President Trump praised the Paralympics as “inspiring,” but “hard to watch.” Most people I have contact with feel that he meant that watching disabled athletes do their sports is painful in some way. I have also read suggestions that in context, Trump meant that since he’s so busy, it was hard for him logistically to watch the Paralympics, not that he disliked watching them.

I can’t read President Trump’s mind. Given the circumstances, I actually think these two interpretations are about equally likely to be correct.

However, I can’t help thinking that it would be thoroughly consistent with what we pretty well know about Trump if he really did mean watching disabled athletes is sad, pathetic, or gross to him. Trump strikes me as a man strongly driven by disgust … by visceral reaction against anything he perceives to be ugly, dirty, abnormal, or tainted. He seems to feel this way about immigrants, … especially brown-skinned, non-European immigrants. He also tends to use words like “disgraceful” and “disgusting” a lot to describe anything he disapproves of. This suggests his main mode of judgment is very physical, as opposed to intellectual, ideological, or moral.

Then there’s the much-discussed example of his very physical mocking of Serge Kovoaleski, a visibly disabled reporter, during the 2016 Primaries. That was also an incident where a more benign interpretation was possible, but more unlikely the longer you look at it and get to know Trump’s reactions in various situations. I never thought that incident was much of a big deal, even though I'm pretty convinced he was mocking the man, just like a playground bully. Policies and actions mean a lot more to me, and in a weird way, outright jeering at disabled people tends to be less shocking to actual disabled people than it is to non-disabled observers. Still, this Paralympics comment has me thinking again.

My take is that it's not crucially important how he meant the statement. The incident is, if nothing else, an important reminder that there are still lots of people who aren’t just uninformed about disabled people, but also find disabled people disgusting, physically upsetting, in a very instinctual but profound way. I suspect that Trump is one of those people. I may be wrong. But it’s not actually saying much to suggest that Donald Trump might be disgusted by disabled people. Lots of people are! You don’t even have to be especially evil or hateful to be repelled by watching disabled people on TV or meeting them in person. You can even be disgusted by disabled people, and admire them at the same time.

That’s how ableism works sometimes!

Disability Thought Of The Week: Your First Time

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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.

Disability Thought Of The Week: Good Things Are Actually Bad

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About 70% of disability activism involves trying to explain that things people think are good or nice for disabled people, (or at worst harmless), are actually bad.

For example:

  • Sympathy
  • Sharing photos and videos of inspirational disabled people
  • Non-disabled actors playing disabled characters
  • First responder registries of disabled people
  • Assisted living facilities
  • Nursing homes
  • Sheltered workshops

These are all things that most people think are good. In many cases, they don't think it. They just assume. It falls to us as disability activists to persuade them, essentially, that blue is actually red. Sometimes we have excellent arguments for this, but often we just have to insist that people take our word for it.

This is one of the built-in problems with disability activism; it’s inherently negative. It really has to be. But that's why it's so important for us to craft and push forward a “positive” agenda ... a set of things we affirmatively want.

Disability Thought Of The Week: Advocacy or Activism?

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At some point over the last couple of years, I started operating with what I think are my own definitions of the words “advocacy” and “activism” in the context of disability.

“Advocacy,” to me, is strategizing and arguing for your own individual needs and goals as a disabled person, while “Activism” involves similar activities, but in pursuit of the needs and goals of all or a portion of the disability community. This distinction is usually defined by the terms “Self-Advocacy” and “Systems Advocacy.” I just think calling them “Advocacy” and “Activism” is simpler and clearer.

And understanding the difference is hugely important! “Advocacy” and “Activism” are both valuable, even essential activities, for disabled people and for the disability community, but they aren't the same thing. They have different (though related) goals, and each calls for different (though related) approaches. In fact, I think that a lot of the problems of individual disabled people, and of the disability community. can be traced to using Activism strategies in Advocacy, and vice versa.

When do you do Advocacy, and when is it time for Activism?

Disability Thought Of The Week: Best Foot Forward vs. Radical Honesty

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One source of misunderstanding and conflict within the disability community is an apparent shift in how we as disabled people try to portray ourselves.

20-40 years ago, the conventional wisdom was that disabled people who wanted to succeed personally and further the cause of disability acceptance should project an image of strength, competence, and calm. The idea was that discrimination and inaccessibility were outgrowths of an assumption that we were sick, incapable, and emotionally messy. By "proving ourselves" we could prove these assumptions wrong ... basically winning the argument against ableism by our example.

Now it is much more common for disabled people to be open about our physical and emotional difficulties, and more blunt and frank about the corrosive effects of ableism. The more common message now is more complicated than it used to be. Fundamentally, we still view ourselves as capable and competent, but at the same time we are more willing to say "All is not well!" ... sometimes personally, and certainly in the broader social justice sense.

There's really not that much of a gap between these two approaches. We've always been fighting ableism, and we haven't given up on the idea that we can be vibrant, happy, contributing members of society. The main difference is that we tend not to value projecting an idealized image anymore. We are a little more willing to say how we really feel, and how things really are, even if it confuses and upsets others.

It is a different approach though. You can hear hints of an almost generational divide in conversations about disability these days. It's the difference between "best foot forward" and "radical honesty" approaches to portraying disability to the rest of society. It may cause conflict, but I think the dialog, and the shift, is productive.

Disability Thought Of The Week: Guns

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I am glad to see that based on what I’m reading, there seems to be a refreshing absence of mental health distraction and scapegoating in this weekend's "March For Our Lives" events.

Others have written well about why focusing on mental ill people ... or mentally incompetent, or autistic ... is bad, even from a pro gun control standpoint. It boils down to the fact that while many people who commit the most spectacular gun crimes at least appear to be “mentally ill,” people with mental illness are on average LESS likely to commit gun crimes. On top of that, the impulse to keep guns away from these folks is fueled mostly by unfounded but very deep fears and prejudices people have about mental illness. It's ableism masquerading as common sense.

In fact, I think this relates in some broader ways to how certain disabilities are still viewed in our society. Gun rights advocates and other instinctive conservatives tend to see a social problem like gun violence and look for answers in character. It feels more honest to them to blame the “bad people” who commit killings than to focus on guns, which to them is simply tools. They may or may not accept statistical evidence that the abundance of guns themselves shapes mass behavior, but in their moral universe, it’s all about individual character, personal decisions about Right and Wrong. On other hand, gun control advocates and instinctive progressives tend to look at social problems and seek technocratic answers, causes, and solutions that bypass personal character in favor of mechanical solutions that can make things better without having to make people better.

So here’s the problem for the disability community. Both conservatives and many progressives still basically view mental illness as at least partly about character. Not to the same extent perhaps, but there are a lot more shared assumptions between conservatives and progressives about mental illness than about most other issues. Prejudice against mentally ill people is, to some extent, “bipartisan.” So that makes it a tempting area of agreement where we might restrict guns, but only for a group of people with “all agree” we fear and, to some extent, despise.

Except that it looks like the young people of the "March For Our Lives," "Enough Is Enough" movement don’t share this misplaced focus on mental illness. Maybe it’s because the perpetrators of these school shootings are people they knew ... classmates ... so it’s harder to think of them as some kind of separate class or type of person. Maybe young people just have a better understanding of mental illness than their elders. They might even be savvy enough to recognize a deliberate red herring when they see one. Whatever the reason, it’s a modestly hopeful sign for the gun debate and the disability community.

Note: On Friday, Rooted In Rights posted several Facebook and Twitter items debunking the supposed link between mental illness and gun violence. They are well worth a look for further information.

Post Election Thinking

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I need to document my present thinking about what Donald Trump's election means for disabled people, and to disability culture and activism. Don't expect a smooth, compact essay. It's more like a brain dump, roughly sorted into some broad categories. Here we go ...

Different Reactions

Some of us feel like our lives are in physical danger ... from a security state on steroids, from violent bigots who feel empowered and approved again, or by loss of health insurance and other supports we need to survive and live decently.

Some of us feel that our identities ... the core of who we are ... have been fundamentally rejected by our neighbors and fellow citizens. It feels like a huge percentage of Americans said, "We're done caring about you and your problems, if we ever really cared at all." Maybe we already knew a lot of people felt that way, but it now looks like a lot more people feel that way than most of us thought. This is somewhat true for disabled people, but even more so for black, LGBTQ, Latinx, women, undocumented people, etc. And, if you are a combination of these things, you've got to feel pretty comprehensively unwanted right now.

Some of us feel morally offended that such a morally offensive man was elected. This may be the least important impact. It's the pearl-clutching, "Oh dear me, that dreadful man" reaction. But, it's a reaction people have, and it's based on real things. It feels gross.

Some of us are worried that specific policy changes ... both predictable and unanticipated ... will shatter the fragile support structures of our lives. This is arguably the most important thing to worry about. It's the kind of thing I and many disability activists kept trying to discuss during the campaign. Instead, we got some valuable calling out of Trump's epic rudeness, and the beginnings of political recognition for disabled people, but not much substance. Well, we're going to get a shit ton of substance now.

Different Threats

As it was during the campaign, it will be during the Trump Administration. There are two different but related threats to disabled people:

1. The moral threat ... the damage that could be done to our self-esteem and to public perceptions of us by things that Trump says and the attitudes he validates in others. His mockery of NYT reporter Serge Kovaleski falls into this category.

2. The policy threat ... the actual things the Trump Administration could do that would materially harm disabled people. This includes possible repeal of the ACA, block granting Medicaid and Medicare, weakening the ADA, and ether passively or actively encouraging even more police violence than we already have.

One threatens our feelings. The other threatens our lives.

During the campaign, it felt like people understood the moral threat, but were a bit sketchy on the exact nature of the policy threat. That's going to have to change fast.

Different Tactics

What should we do now?

Do not:

"Reach out" as we normally would to a generic Republican administration, in hopes of finding some fabled, elusive "common ground" that will miraculously result in a good deal for disabled people. For one thing, these aren't generic Republicans. For another, it will be our everlasting shame if we celebrate protecting slivers of Social Security and Medicaid, (if we are very lucky,) while racist, anti-immigrant, anti-Muslim policies get a green light. Finally, this "common ground" is mostly an illusion ... though in theory it really shouldn't be.

Do not:

Focus extra hard and narrowly on disability issues, while treating "other people’s” concerns as a distraction. Is it really necessary to explain why trying to cut favorable separate deals for disabled people would be a weasel move, and ineffective to boot? I don't mean we shouldn't fight our specific battles. Nobody is better qualified to defend disability policies than disabled people. But we must not shut out all the other battles on the premise that in the new environment, the only way to "get ours" is by currying favor at the expense or neglect of others.

Do:

Engage with the new administration, but aggressively, with clear markers of what we are not willing to tolerate in changes to disability policy. Resist the temptation to look virtuous by offering cooperation or common ground up front. We may need to compromise at some point, but that comes at the end, not the start. We may have to prioritize though ... something a lot of activists hate doing.

Do:

Double down on intersectional partnerships and solidarity with other marginalized people, while making sure disability is always part of the coalition and its priorities. I'm not that good at discussing intersectionality, so I'll leave that point there for the moment, along with a Wikipedia link. I don't fully understand it, but by instinct I am for it and open to learning. I would love to find a really good "plain language" explanation of intersectionality and why it is important. Again, I know some specifics, but I'm not able to put them into words at this point.

Do:

Make an extra effort to reach out to disabled people who aren’t activists, don’t like or don't trust politics, and don’t view disability as a political identity. It feels like there are millions of disabled Americans who know almost nothing about what disability activists do and think. Some of them probably voted for Trump. Many of them may not have voted. Most of them probably don't think disability is a "political" thing at all. Unless I am mistaken, it will soon be impossible to ignore how much of a political thing disability is. Those of us deeply at home in disability activism and culture owe it to our fellow disabled people to engage them wherever they are. If we are going to reach out to any sort of "opposition," or "other side," I think it should be to fellow disabled people at the grassroots.

Reading and Writing: A Good Start

#CripTheVote: Post Election Feelings & #WhatsNext

Disability Rights Advocates Are Terrified Of A Donald Trump White House
Daniel Marans, Huffington Post - November 10, 2016

ADAPT's Open Letter to President-Elect Trump
ADAPT - November 10, 2016

Statement from the National Disability Leadership Alliance on Solidarity and the 2016 Presidential Election
National Disability Leadership Alliance - November 10, 2016