Disability Thought Of The Week: Judging Activisms

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

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!

Podcast / Vlog Pitch

I’m getting an itch to podcast again, or maybe start a vlog. Here’s the idea:

I have in mind an audio podcast or YouTube vlog that would be called something like "Disability Thinking 101" or "Disability Thinking Basics." Each episode would explore a key word or term in disability culture and activism. The audience would be people who are curious about or new to disability issues ... plus, people who have been involved for some time, but would like to refresh their understanding of the ideas that structure the disability community's conversations and work.

Ideally I try to put out an episode every other week, or maybe just twice per month. I would want to have at least one guest for each episode, preferably someone who has some expertise and something to say about the term being discussed. We might also incorporate comments into the conversation by announcing the next upcoming topic, and reading out a selection of comments on the term as part of the next episode. Again ideally, I would hope to keep each episode under 30 minutes long.

Possible terms to discuss ... slightly organized, but not necessarily in this order:

• Disability
• Crip
• Ableism
• Advocacy
• Accessibility
• Accommodations
• Marginalized
• Intersectional
• Erasure
• Representation
• Autism
• Neurodiversity
• Intellectual Disability
• Self-Advocate
• Functioning Labels
• Institutional
• Long Term Care
• Sheltered Workshops
• Independent Living
• Social Model
• Consumer Direction
• Inspiration Porn
• Disability Awareness
• Eugenics

I am posting this idea because I hope to get some suggestions on content, identify people who might want to co-host with me on one or two of these topics, and get a feel for whether a Patreon or similar campaign to support this project financially would be feasible. If you have ideas or want to participate in some way, you can leave a comment below, or email me at: apulrang@icloud.com

Disability Thought Of The Week: Your First Time

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

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 Blogger Linkup - April, 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, May 11, 2018.

Disability Thought Of The Week: Advocacy or Activism?

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?

Monthly Reading List - March, 2018

Monthly Reading List

Five disability-related items I read in March, 2018:

The Stories We Don’t Tell: My Mom On Raising An Autistic Child And Why She’ll Never Write About Me
Sarah Kurchak, Medium - March 6, 2018

This is a must-read for anyone who doesn't understand why so many disabled people don't like "special needs parent" memoirs. Obviously, parents of disabled children should be able to write about their experiences if they want to. But they absolutely must at least consider how their kids would take what they plan to say, and assuming they'll never read it or understand it just isn't good enough, regardless of their disability. That goes maybe double for people who think about reading such memoirs.

Disabled People Can Have Eating Disorders, Too
Micaela Evans, Teen Vogue - March 2, 2018

The essential point of this piece applies to many health conditions beyond eating disorders. Doctors often don't function at their highest capability with disabled patients because they have a hard time distinguishing between our underlying disabilities and more immediate medical conditions. This confusion is probably the number one barrier disabled people face in getting good, regular medical care.

Record snow creates 'nightmare' for people with accessibility issues, says advocate urging better clearing
David Bell, CBC News - March 5, 2018

There's nothing special about how the article is written. I am including it because winter weather isn't mentioned often enough in discussions of physical accessibility. Obviously, it only directly concerns disabled people who happen to live in places that have snow and ice. But where they do appear, the barriers are profound and chronic. And unlike stairs and curbs, removing snow once doesn't do the job. You have to do it constantly. On the other hand, snow removal isn't actually that difficult in any given spot, compared to building a ramp. So there's a lot to discuss!

Stephen Hawking, Wheelchairs, Death. and Freedom
Karen Hitzelburger, Claiming Crip - March 15, 2018

On balance, I found most of what I read about Stephen Hawking in the wake of his death pretty decent. The only real exception was the recurrent tendency ... for some writers seemingly a compulsion ... to make basically the same faux-insightful remark about Hawking being "free" of his wheelchair now that he's dead. Karen does a good job here not just of calling out the practice, but explaining why so many disabled people really loathe it. As strongly as we feel about it, it's not something that's immediately obvious to everyone ... maybe to most people ... so it deserves a good explanation like this one.

The Overlooked History of Black Disabled People
Vilissa Thompson, Rewire News - March 16, 2018

There's an obvious reason to pay attention to the history of black disabled people. It's a matter of fairness and representation. But that almost implies that it's not an interesting topic on its own, which it is! Come to the subject for the justice of it. You'll stay because it's interesting.

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

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

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.