What I'm Thinking About Today

Blogging Note: I am going to start doing more posts that are short, underdeveloped sketches of stuff I'm thinking about from day to day. Eventually, I hope to get into a routine of blogging every day, with only one or two fully-developed essay blogs per week. I welcome feedback!

I found my way to a Jezebel article about different styles of commentary in online journalism. Opinions, Arguments, Hot Takes, Trolling. It has me thinking about how disability blogging and social media matches up with broader online genres and habits ... good and bad.

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In yesterday's post about Inspiration Porn, I linked to an article in the UK's Daily Telegraph, about a wheelchair using man who choked to death in a McDonalds, right in front of staff and other customers who didn't take any notice until it was too late. It was clearly a terribly sad thing to have happened, and it doesn't reflect too well on bystander indifference. On the other hand, I sometimes feel like there are two very distinct shades of "bad news" disability stories. There's stories of injustice, which prompt the reader to ask why and think about how things might be better. And then there are stories that mainly encourage readers to scold, risk risk, and disapprove of individual wrongdoers, and lament a perceived decline in general morality and virtue. I am wondering if there’s more significance to this difference. Do people who gravitate towards the more individual-condemnation variety of “bad news” disability stories have different overall ideas about disability than those who focus more on stories of systemic awfulness?

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Giving Tuesday

Today is Giving Tuesday, which I guess is a special day meant to follow the commercialism of Black Friday, Small Business Saturday, and Cyber Monday, by encouraging people to give to charities. It reminded me of a post I wrote in May, about how to choose a disability-related charity:

Choosing A Disability Charity

Disability Thinking - May 13, 2015

I tried in that post to be fairly neutral on what kind of disability work is most valuable, and instead focused on effectiveness and simply being aware of what kind of disability-related goals you want to support. In other words, I didn’t really make any value judgments. Today I’m going to go ahead and talk about what kinds of disability work I value, and why.

There are four main kinds of non-profit disability work I will list them in order of my personal preference.

Advocacy and Policy

- Helping disabled individuals fight discrimination, improve physical accessibility, and navigate bureaucratic barriers.

- Shaping all kinds of policies, regulations, and laws in ways that expand opportunities and make life better for disabled people.

Advocacy and Policy are my top priorities. I believe that most of the problems disabled people face are systemic rather than personal, and that making better policies and practices regarding disabled people does the most long-term good for the most people. It also happens to fit my personality, which is unsentimental and analytical, so I just "like" advocacy and policy wonkery more!

Services and Support

- Helping disabled people solve everyday problems directly and indirectly related to their disabilities.

- Providing disabled people with the financial support, technology, and direct personal assistance to achieve and maintain their independence.

Services and support address individual needs, especially when they are tailored to each person's situation and directed as much as possible by the person using the service. I feel it is important to support these services because individuals should not have to wait for that perfect accessible world in order to enjoy independence and fulfillment. I'm not into fancy, elaborate programs, and I'm dead set against segregated, sheltered ones. But certain basic services, like income support and home care, are massively valuable.

Awareness

- Informing people about disability issues and the experience of living with disabilities.

- Increasing social acceptance and reducing prejudice against disabled people.

Although social acceptance is important, and being treated cruelly because of your disability is terrible, I am skeptical about the effectiveness of most kinds of "disability awareness" campaigns. For one thing, I'm never quite sure what, exactly, people mean by "awareness." Disability awareness campaigns also tend to be rather simplistic, setting too low a bar for what it expects from people.

Medical Research

- Learning more about specific medical conditions that produce disabilities.

- Developing therapies and cures that might lessen or cure disabilities.

I value all kinds of scientific research, and in some cases, better therapies and treatments can improve disabled peoples' everyday lives. Too often, though, the search for a "cure" seems like a boondoggle. The rhetoric for these campaigns is often so negative about disability itself that they actually make it harder for us to achieve social acceptance. Basic research should be funded objectively, not based on who has the saddest stories, the cutest poster child, or the slickest marketing team.

I'll add one more recommendation, which was also in my May blog post ...

There are few more important principles of the disability community than: “Nothing about us without us.” Whenever possible, support disability organizations led by disabled people, with disabled on their boards, and disabled people in upper management and on service-providing staff. If nothing else, you should seriously question the commitment and relevance of a disability organization that resists or downplays inclusion of disabled people in leadership roles.

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Conflicted

What message do we as disabled people want to send about our capabilities and resilience?

We can do anything. Just give us a fair shot. We are happy and independent. We have our acts together. No problem. Nothing to see here!

or

Having a disability is really hard. Disabilities are trying and painful. Social stigma, ableism, and real-life barriers are, if anything, even worse. Many of us have suffered trauma, and that needs to be understood and respected, too.

These things aren't contradictory of course. That's really the key to living well with disabilities. But from the outside ... and sometimes from the inside ... they sometimes seem like contradictions.

I feel like we are at a stage where the disability community spent several decades in which our general PR strategy was "toughing it out." Now, we are sort of redressing that by emphasizing "self care" and reminding the rest of the world that while we are fundamentally okay as people, disability isn't nothing, and we have real barriers to deal with.

This is the first of what will probably be a series of short blog posts on things disabled people don't have completely figured out.

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The Way Of The Advocate Is Hard

One of the reasons why strong, vocal disability advocates get more negative than positive response in social media ... such as when they criticize Inspiration Porn ... is that most people find strong, critical, negative opinions on any subject to be unattractive. Advocates can shape attitudes over time. They can bring about important policy change. A significant minority of people actually admire advocates and love what they do. But on just about any issue you can name, advocates and social critics who speak their minds are rarely liked.

This phenomenon is a bit more intense and hypocritical in the disability sphere because of the unique characteristics of ableism. But I don't think the backlash is much worse or all that different from the responses people get when they express challenging opinions on race, gender, politics, religion, economics, etc.

So what?

Well, it suggests that if you're going to be an advocate, especially in the realm of disability, don't be surprised if you catch a lot of crap for it. If you're very good at it, and articulate, you might gain a small but loyal fan base within the activist community. If you're smart about strategy and don't take things too personally, you can succeed in what you set out to do. But if you venture out into the wider public discourse, don't expect to be either liked or admired. Change is uncomfortable. Most people don't like to be uncomfortable. And people absolutely hate it when the people they think they are helping are the ones making them feel uncomfortable.

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Evolution

I’m working on a bunch of things to post about for the next couple of weeks. In the meantime, here’s a terrific quote from Ari Ne’eman’s two-part article on the National Council on Disability’s research on Sheltered Workshops:

"Disability policy is full of examples of yesterday’s innovation becoming today’s indignation. As my friend Anne Donnellan once put it, “The mark of anyone good in disability service-provision is that they’re at least a little bit ashamed of what they were doing twenty years ago.” The opposite of this is also true – many of the worst disability services come from becoming too attached to program models that were considered state of the art in previous decades." -- Ari Ne’eman: (Almost) Everything You Need to Know About Sheltered Workshops: [Part 1] [Part 2]

I thought of this earlier this week during a great Twitter conversation I had about “Person First Language” and “Identity First Language” with @greggberatan, @erabrand, @mikeemort and a few others. I switched from PFL to IFL a couple of years ago. Until that time, my understanding was that Person First Language was THE progressive term to use, completely consistent with the Social Model of disability. Anything else, I assumed, was ableist, and any disabled person using IDL had to be misinformed.

As it turned out, I was the one who was misinformed. No, that’s not quite right. I was informed … 25 years ago. And while I am not “ashamed” of having used and encouraged Person First Language, I have no trouble now saying that my thinking has evolved, and so has the thinking of many smart, savvy, self-aware people in the disability community. People who prefer using Identity First Language know what they are doing.

Ideas about disability evolve. Cynical ableists aside, what we did before was the best we could figure out at that time. "People with disabilities" was a huge improvement over "handicapped," and we should have no regrets. However, we do need to take care not to be arrogant about our beliefs, or assume we are always the cuttting-edge thinkers, and remember that sometimes, people who disagree with us may have the better idea.

Note:

I won't try to explain the pros and cons of the two "identification models." I am not very good at parsing out the different justifications for each one. I will say that once I bought into Identity First Language, I did so enthusiastically, mainly because it's easier to say and write. "I'm disabled" just sounds smoother and less cumbersome than "I am a person with a disability."

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Dueling Dualisms

It seems like 90% of disability blogging is about a few fundamental questions:

1. Is disability mainly a disadvantage to overcome, or a social identity to embrace and explore?

2. Which is more important, making better disability policy, or increasing awareness and acceptance?

3. Should we try to be as open and understanding as possible with non-disabled people, or should we draw and reinforce strict social boundaries to protect ourselves?

Most disability blogging either poses versions of these questions or asserts answers to them. What other basic either / or questions make up the current disability conversation?

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Checking My Privilege

Several weeks ago, fellow disability blogger and Facebook friend Dominick Evans posted his answers to a checklist on privilege. The idea is that you start out “standing” at the midpoint on a scale of social and economic privilege, then take steps forward, backward, or stand still, according to your answer to each question. The questionnaire isn’t designed specifically for disabled people, but I think it produces a fairly accurate, honest picture of relative privilege.

Here are my answers. As you will see, my disabilities subtract fairly little from an overall surplus of privilege. For what it’s worth, my score feels more or less correct to me.

1. If your parents worked nights and weekends to support your family, take one step back.

     No. Stay.

2. If you are able to move through the world without fear of sexual assault, take one step forward.

     I’m not sure my confidence is justified, but I don’t think about it, so Yes. Step Forward.

3. If you can show affection for your romantic partner in public without fear of ridicule or violence, take one step forward.

     Yes. Step Forward.

4. If you have ever been diagnosed as having a physical or mental illness/disability, take one step back.

     Yes. Step Backwards.

5. If the primary language spoken in your household growing up was not English, take one step back.

     No. Stay.

6. If you came from a supportive family environment take one step forward.

Yes. Step Forward.

7. If you have ever tried to change your speech or mannerisms to gain credibility, take one step back.

     Maybe a little bit, due to disability, but on balance I would say No, I have never really felt a need to adapt in any cosmetic ways. Stay.

8. If you can go anywhere in the country, and easily find the kinds of hair products you need and/or cosmetics that match your skin color, take one step forward.

     Yes. Step Forward.

9. If you were embarrassed about your clothes or house while growing up, take one step back.

     No. Stay.

10. If you can make mistakes and not have people attribute your behavior to flaws in your racial/gender group, take one step forward.

     No. I have many times felt that mistakes and shortcomings were attributed to my disabilities. Stay.

11. If you can legally marry the person you love, regardless of where you live, take one step forward.

     I am going to say No, because of how marriage adversely affects disability benefits. Stay.

12. If you were born in the United States, take one step forward.

     Yes. Step Forward.

13. If you or your parents have ever gone through a divorce, take one step back.

     Yes. Although it happened when I was a young adult, my parents divorced. Step Back.

14. If you felt like you had adequate access to healthy food growing up, take one step forward.

     Yes. Step Forward.

 

15. If you are reasonably sure you would be hired for a job based on your ability and qualifications, take one step forward.

     No, I’m not sure of this, because of my disabilities. Stay.

16. If you would never think twice about calling the police when trouble occurs, take one step forward.

     Yes. Although police behavior concerns me, I don’t personally feel like I am at greater risk. Step Forward.

17. If you can see a doctor whenever you feel the need, take one step forward.

     Yes. Step Forward.

18. If you feel comfortable being emotionally expressive/open, take one  step forward.

     No, not entirely. Stay.

19. If you have ever been the only person of your race/gender/socio-economic status/sexual orientation in a classroom or workplace setting, please take one step back.

     Yes, I have been the only disabled person. Step Back.

20. If you took out loans for your education backward.

     No. Stay.

21. If you get time off for your religious holidays, take one step forward.

     Yes. Step Forward.

22. If you had a job during your high school and college years, take one step back.

     No, not really, and certainly not by necessity. Stay.

23. If you feel comfortable walking home alone at night, take one step forward.

     Yes. Step Forward.

24. If you have ever traveled outside the United States, take one step forward.

     Yes. Step Forward.

25. If you have ever felt like there was NOT adequate or accurate representation of your racial group, sexual orientation group, gender group, and/or disability group in the media, take one step back.

     Yes. Step Back.

26. If you feel confident that your parents would be able to financially help/support you if you were going through a financial hardship, take one step forward.

     Yes. It happened more than once. Step Forward.

27. If you have ever been bullied or made fun of based on something that you can’t change, take one step back.

     Not often, but Yes. Step Back.

28. If there were more than 50 books in your house growing up, take one step forward.

     Yes. Step Forward.

29. If you studied the culture or the history of your ancestors in elementary school take one step forward.

     Yes. Step Forward.

30. If your parents or guardians attended college, take one step forward.

     Yes. Step Forward.

31. If you ever went on a family vacation, take one step forward.

     Yes. Step Forward.

32. If you can buy new clothes or go out to dinner when you want to, take one step forward.

     Most of my life, Yes. Now, No. Stay.

33. If you were ever offered a job because of your association with a friend or family member, take one step forward.

     Yes. Step Forward.

34. If one of your parents was ever laid off or unemployed not by choice, take one step back.

     No. Stay.

35. If you were ever uncomfortable about a joke or a statement you overheard related to your race, ethnicity, gender, appearance, or sexual orientation but felt unsafe to confront the situation, take one step back.

     Yes, regarding disability, and I felt uncomfortable about confronting the person. Step Back.

RESULT: I am 11 steps ahead of where I started.

This questionnaire is pretty good, but it could be better at measuring disability factors. For example:

1. For disabled people, not having had a job during high school or college is usually a competitive disadvantage, rather than an indicator of privilege, as question 22 seems to assume. I’m not sure how to fix that for scoring, but it should be addressed.

2. Disability should be added as a possible factor to many of these questions where they aren’t already.

3. Add a question about being able to easily purchase clothes that fit properly and preset you in a stylish, professional manner, which is hard or impossible to do for many disabled people.

4. Add a question about whether you need direct, one-on-one help with essential everyday tasks in order to function. This is something that some, but not all disabled people need, and is a disadvantage in terms of privilege, even when daily help is available, because it is a major life factor other people simply don’t have to deal with.

None of these adjustments would change my overall results very much, but they would make this a more useful questionnaire overall.

This thing isn't meant to make you feel bad, no matter what the outcome. It's more of a self-awareness and thinking tool. Give it a try.

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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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9 Ways America Would Be Different Without The ADA

It is hard to get a handle on what the Americans with Disabilities Act has accomplished and meant to disabled Americans for the last 25 years. As a disabled person myself, I have been trying to think of a way to sum up the ADA’s importance.

Pretty much everyone in the disability community celebrates the ADA, but it’s a very glass half full / glass half empty thing for us. How each of us evaluates the ADA says as much about our own personalities and individual experiences than about the law itself. Unfortunately there aren’t many objective measures of the ADA's success or failure. How do we assess the value of the ADA? Has it really made much of a difference?

Maybe we should ask, “What would America be like today, if the ADA had not become law in 1990?"

Set aside the very strong possibility that an ADA of some kind would have passed eventually, in 1995 or maybe 2000. Let’s suppose instead that after failing to pass in 1990, the whole idea of a civil rights law to cover disabled Americans falls out of favor entirely.

Here are 9 ways America would be different today, without the ADA:

1. Most buildings of all kinds built after 1992 would have unnecessary barriers like narrow doorways and steps at entrances. Facilities and features for disabled people would be rare, separate, hidden from view, and hard to find.

2. Disabled people would only venture out into the community or travel for bare essentials. Most recreational places like restaurants, theaters, stadiums, hotels and motels would lack accessibility restrooms, restricting disabled people to only the briefest visits.

3. Sidewalk curb ramps would be rare, and wheelchair users riding in the street would be a major local irritant issue, similar to cars vs. bikes.

4. A handful of colleges and universities would be known for their accessibility and accommodation practices, and disabled people would have to go to them or not go to college at all. A few very expensive private colleges would probably be founded just for students with specific kinds of disabilities.

5. Virtually all disability activism would consist of groups representing specific disabilities lobbying for very targeted benefits and privileges, plus individuals raising money to pay for personal needs. The concept of “disability rights” would be viewed abstractly, discussed mainly by theorists and academics but unfamiliar to most disabled people.

6. There would be huge opportunity and participation gaps between disabled people with some wealth, who could pay for their own accommodations in workplaces and other areas, and those too poor to do so.

7. Far fewer disabled people would even attempt to get jobs, since they would be told quite plainly that they are not being hired because of their disabilities. Mentally ill people would find it almost impossible to get jobs of any kind, as employers would regularly and legally probe into whether applicants had any mental health histories.

8. Elderly people would move into nursing homes and similar facilities sooner and in much higher numbers, due in part to less accessible communities, and also because of the lack of any meaningful commitment to the principals of “most integrated setting."

9. Very few buses trains, or subways would be wheelchair accessible, mostly in the biggest cities and on a handful of the busiest routes. Accessible, affordable public transportation in rural areas would not exist, apart from a few vans operated irregularly by disability non-profits, nursing homes, and churches.

What do you think would be different today without the ADA? Join a Twitter hashtag … #AmericaWithoutADA

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Stuff That Worries Me

I’ve decided to start a new recurring feature called "Stuff That Worries Me."

Obviously, I wouldn't bother writing about things if I didn't want people to pay attention and maybe see things my way. That said, I hope readers will take these as just things I'm thinking about, not dire warnings or bitter, angry criticisms. You could call it "Concern Trolling," but my understanding is that true Concern Trolls use "self-criticism" dishonestly, to deliberately lead astray.

My worries may well be unwarranted, nitpicky, and annoying, but they'll at least be honest ... what I am actually thinking ... and from a disability rights perspective, not some other ideology in disguise.

Here’s the first one:

Whenever I talk to non-disabled people and try to describe the things that disability bloggers blog about, it all sounds a lot less important coming out of my mouth than when we blog amongst ourselves. This reminds me that most people still don't get why "disability issues" are important. People realize they are important to us, but not IMPORTANT. Most people don’t have any strong opinions about disability issues, and can’t really imagine them being interesting to anyone outside the disability community.

On the other hand, this feeling might also indicate that some of what we blog about is, in some sense, actually trivial. That's fine for some of the things we’re passionate about. But, I worry that if we can't prioritize issues within the disability community, how can we hope to focus everyone else's attention on what's really urgent?

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Ideas, Not Mandates

So, first I read this blog post by Rob J. Quinn:

A Moment of Not Dealing with Disability

Rob J. Quinn, I’m Not Here To Inspire You - June 29, 2015

"But as I peruse Twitter and the blogs of people who specifically don the cap of advocate, I recently came across the term ableism. It’s apparently our version of racism, and to my surprise the term has been around for a while. And I wonder, as we tweet and write at the top of our lungs about the injustice that people with disabilities often face—the latest issue seemingly piggybacking off he Supreme Court ruling giving homosexuals the right to marry to discuss the “marriage penalty” some people with disabilities face in losing benefits due to a spouse’s income—how this post will be viewed."

"Am I being ableist against my own community for pining to be able-bodied? Am I rejecting my own identity?"

I started thinking about responding to this piece, mostly to reassure Rob and other fellow disabled people that we all have moments and days when we are sick of being disabled. And I’m not talking just about being sick of the inaccessibility and ableism that make us more disabled … though there is that … but also being sick of our own, actual physical or mental conditions.

Then, just a day later, I ran across a post on Tumblr, a reblog by Wheelchair Problems of a post by Fuckyoumyalgia:

"all of these are perfectly valid relationships to have w/ your disability. none of them are wrong or right or inherently healthy or unhealthy. they just are what they are. if you wanna improve your relationship w/ your disability that’s fine. if you don’t that’s fine too."

"the only thing that’s not fine is telling someone that their relationship w/ their own disability is wrong"

Bingo.

The thing is, it’s possible take some of the most commonly talked about tenets of “disability culture” as mandated beliefs or litmus tests. But really they are just ideas meant to break people out of far more common and truly self-destructive ideas people have about disability.

Too many disabled people think as Rob did about his disability, but all the time, not just for a moment or a day. Too many disabled people view accessibility as a special benefit and accommodation as some kind of favor. Too many disabled people internalize low expectations for themselves and spend their whole lives wishing they were normal.

That’s partly why disabled activists and Twitterers hammer on self-acceptance, double down on not wanting to be “cured”, and “call out” ableist language and “inspiration porn.” There are directions in disability thought that seem to be more productive and helpful for disabled people in the long run, and they mostly revolve around self-acceptance and asserting our rights. That doesn’t mean we are all obligated to feel proud, empowered, and bad-ass 24/7.

Because as the Tumblr post suggests, two other pillars of disability culture are personal choice and no longer allowing ourselves to be shamed. It is important to promote emerging progressive ideas about disability, if for no other reason than to make sure disabled people know there are many ways to think about their disabilities. But it will never do for us to tell each other that any of us are doing disability wrong.

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Awareness Or Activism?

Minister fails to solve mystery of Swansea’s ‘Disability Confident City’ accolade

John Pring, Disability News Service - July 3, 2015

You don’t have to understand the intricacies of disability policy in the UK to realize that this article is about the enduring conflict between two approaches to disability advocacy … Activism vs. Awareness.

There are many ways to define these terms. What we see here is two different ways to accomplish roughly the same goal, significantly improving employment prospects for people with disabilities.

The Awareness approach is to persuade employers to hire more disabled people. It’s based on the assumption that the unemployment is high for disabled people mainly because employers don’t understand disability and harbor misconceptions about the capabilities of disabled people. If we can just reach all he employers, sit them down, explain where their thinking is off base, and maybe introduce them to a few highly capable and charismatic disabled people, then things will change for the better. All this requires maintaining more or less friendly, patient relations with employers. Employers don’t have to attend our seminars, and in fact, hiring itself is basically a matter of choice, not obligation, so accusing and alienating employers won’t help.

The Advocacy approach focuses more on structural issues that hold down employment of people with disabilities. This may include work disincentives, (in which you actually lose money due to reduced benefits when you take a job), a mismatch between open jobs and applicants’ qualifications, inaccessible workplaces, and both deliberate and unconscious discrimination. After decades of anti-discrimination laws that often seem toothless, it is easy to conclude that employers will never change their practices unless forced to do so. In this view, disability awareness seminars, corporate-level networking, and aspirational slogans are wastes of time. Worse, they can function as cover for people who don’t want to do anything of substance, but need to appear as if they are.

The Awareness approach is generally optimistic, but runs the risk of being naive, and coopted and hijacked by the people we are trying to persuade. As the article linked above suggests, it is frighteningly easy for bureaucracies to cynically adopt progressive rhetoric that bares no resemblance to their policies and practices.

The Advocacy approach is, at least on the surface, pessimistic, and many people unpleasant, but may be more realistic and effective when carefully targeted. Personally, I prefer Awareness as an activity, but I have more actual faith in Activism to actually accomplish things.

Within the disability community, these two approaches are not just strategies, they are separate subcultures.

Activists and awareness people rarely work together or talk to each other. And people seem to gravitate towards one or the other approach naturally, based as much on temperament as philosophy. Some of us enjoy teaching and shmoozing. Others prefer campaigning and protesting. For some, asking people to change feels like begging. Others don’t like the anger and sometimes irrationality they perceive in activism. It is both a strategic and a personal choice.

I still think there are arguments on both sides when it comes to improving the employment picture for disabled people. I’m skeptical that mere persuasion and “disability awareness” will ever make much of a difference in employment. Yet, I’m equally doubtful about how effective any sort of hiring quota or mandatory system would be in the long run. Both approaches seem rather futile to me.

How do we dramatically improve employment for disabled people? It’s one of the few disability rights questions I really don’t know how to answer.

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TED Talk On Autism History

I haven’t seen this TED Talk posted very much on Facebook or referred to on other social media. I’m surprised. Autism is a pretty intense topic, with fully-formed ideas and ideologies from at least two or three different perspectives. The speaker seems to come from a neurodiversity point of view, though he only hints at how deep the divide can be between, for instance, Autism Speaks supporters and autistic bloggers. The value here is the history, which helps explain how all the different paradigms of autism got to be the way they are. If nothing else, it’s helpful to know that autism has always been controversial, and our understanding of it has always been at least as ideological as scientific.

I also think there are insights here that can help increase understanding in both of the main camps. People with the more medical-model view that autism is a public health disaster get more evidence that it is so much more and different than a disease in the typical sense of the word. Plus, neurodiversity advocates might gain some understanding of why so many parents are resistant to different concepts of autism, which are often expressed as passionate criticism of what parents do with autism ... since parents, and particularly women, were previously all-out blamed for autism. I can even understand a little more why some parents don't care what science tells them about, say, vaccines, since they can point to how wrong about autism experts have been over the years.

If I'm missing important points about this video, I would love to hear about it.

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A Must Read on Two Kinds Of Disabled People

On Being "Ugly Disabled"

Cara Liebowitz, That Crazy Crippled Chick - June 17, 2015

This article is way too great to leave for my weekend Weekly Reading List post.

First of all, I am “Ugly Disabled” as Cara defines it here. Which is to say that because of my disabilities, I mostly don't fit mainstream standards of physical attractiveness. Which is not to say that I hate how I look, or that there’s nothing physically attractive about me. It’s just that, like Cara and so many other disabled people, I don’t look “normal except for …” So, I relate to this very personally. I get where she’s coming from.

Second, I wholeheartedly second the part about how people who are “Pretty Disabled” seem to have a bit of a social edge on us, even in a community that’s all about inclusion and equality. When I first started working in Independent Living, and for the first time found myself in rooms filled with fellow disabled people of all kinds, I admired the ones who looked really slick and put-together in their cool, quiet, lightweight manual wheelchairs. And, I am ashamed to say, I felt less than fully comfortable around the disabled people "who rock and flap and whose speech is sometimes not fluent.” I got over both the hero-worship and the internalized ableism ... mostly ... but the distinctions are still there in my mind.

Finally, I would like to point out how beautifully and precisely Cara describes her disability, in a neutral, non-melodramatic tone, and with concrete terms anyone can understand. I don’t know whether it was therapeutic or revelatory for her, but I have sometimes found it helpful to write a description like this of my own disabilities. I wonder if that would be a good exercise for teenagers growing up with disabilities, to help them explore what disability means to them, as opposed to whatever they have been taught to think about it?

Please do follow the link and read the post. It is important and a pleasure to read.

Via the Disability Visibility Project Facebook Page.

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Diagramming Disability Issues

Commissioners support airport parking fee change for disabled

Angelia Davis, Greenville Online - June 16, 2015

The issue discussed in this article isn’t very important, but it got me thinking about how we classify disability advocacy issues. I would like to offer a model.

I think that one way to look at any disability issue is to ask two questions:

1. Is it about rights or benefits?

and

2. How high or low are the stakes?

Let’s get really nerdy about it and draw a diagram:

Now let’s add some of the more familiar disability issues:

Free Airport Parking seems like a fairly Low Stakes issue, though not extremely low because some disabled people probably do travel a lot, and suddenly having to pay for parking will probably affect them quite a bit. It is also pretty firmly a Benefits issue, and only a matter of Rights if you believe that inexpensive parking is a right that disabled people should definitely have. Personally, I think the answer is, or should be, a qualified “no.” In the same quadrant but a bit lower stakes I placed Special Event Discounts … those discounts often given out at theme parks and county fairs and such. They are almost more like charity than rights, and of little real consequence to the disabled community. Whether you think they are nice gestures or whiff of condescension, either way they don’t change anyone’s lives.

To me, Accessible Parking belongs in the Rights / Low Stakes quadrant … clearly a Right, and of comparatively low importance. However, I would place it close to the High Stakes area. It’s important to some of us, on some occasions, and when we need it, Accessible Parking is very important indeed. But it’s probably not as important as the outrage and publicity surrounding it, especially generated from non-disabeld people. For some reason, it’s the one issue they consistently want to advocate for on our behalf.

Minimum Wage and Social Security Disability funding belong in the lower right quadrant, as they both mainly concern Benefits, (i.e., money), and directly affect disabled peoples’ ability to live independently and prosper in the community. There are Rights elements to both issues, though Minimum Wage is somewhat more about Rights than Social Security. Minimum Wage should be a Right, whether or not it amounts to a whole lot of money for any particular disabled person.

Finally, take a look at the High Stakes, Rights area. Home Care Funding is mostly a Rights issue, but also very much about monetary Benefits. It is also very clearly a High Stakes matter, as for many of us, Home Care is the keystone of our entire way of life. Without it, we can’t live where we live, and can’t do anything we usually do. Loss of Home Care can even shorten our lives. Stakes don’t get higher than that. Building Accessibility is even more of a pure Rights issue, not really a Benefit at all. And it’s important, but perhaps not always as High Stakes as a life-and-death issue like Home Care.

These are all personal judgment calls. It’s not an exact science. But figuring out the “location” of various disability issues might help us understand them better.

Also note that this model doesn’t include cultural issues, like “Inspiration Porn," or interpersonal issues, such as the terms people use to refer to disabled people. Maybe sometime I’ll try making a diagram of some sort for those.

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On Social Security Reform

Yesterday afternoon I participated in a Twitter Chat on “Social Security Reform," hosted by Career ACCESS, an initiative to boost employment of young people with disabilities.

The Twitter Chat was mostly about gathering ideas about what the problems are how to fix them. Here is a Storify, created by Career ACCESS, with a sample of what the participants said:

This is a great start. It got me thinking about the different reasons people want to reform Social Security. We are not all on the same page on this. I have noticed that depending on point of view, calls for Social Security Disability and / or SSI reform usually have one or more of the following goals:

Ensure greater financial security for disabled people

We can pretty much assume that most disabled people want this, along with anyone else who actually cares about Social Security’s core mission. It is also an interesting opening for testing some of the new thinking about ideas like Guaranteed Income and the effectiveness of alleviating poverty by simply “giving poor people money,” instead of always trying to craft newer, more elaborate social programs.

Make it easier and more beneficial for disabled people to work and pursue careers

Disabled people want this, too. But so do a lot of social workers and others who believe strongly in the moral, spiritual benefits of work, apart from the financial security that comes from a secure, well-paying job. This point of view has the potential to get a little problematic, because it sometimes leads to some shaming of disabled people who aren't working. However, it is also where liberals and conservatives in disability policy find the most common ground.

Reduce overall Social Security Disability spending

It’s far from clear that Social Security Disability is too expensive or running out of money. The most we can say is that disability benefits are, at times, more costly than some people, maybe most people, think they should be. But who's to say what is the “right” amount to spend? Maybe we're not spending enough. That said, if reforms that accomplish the first two priorities also happen to “bend the cost curve," even a little, that would be a good thing for everyone.

Crack down on fraud

Evidence … as opposed to resentful perception … suggests that there is actually not much fraud at all in Social Security programs. Still, a simpler system, with fewer obscure rules, programs, and eligibility criteria might actually save money and reduce the opportunity for actual, bona fide fraud. Not to mention errors, which may be as much of a problem as fraud.

Confine disability benefits to people who are *really* disabled

This what you hear from people who divide recipients into two categories. There are deserving disabled people, and then there are lazy people and scammers, along with with people who have these weird conditions nobody heard of until a few years ago. They are convinced that common sense is all you need to tell who IS and ISN’T really disabled. Some people really believe this. For others, the argument may be a more socially acceptable substitute for what they really think, which is that the whole program is creeping socialism and should be abolished.

I hope Career ACCESS does more of these Twitter Chats. If they do, I hope more people will participate. We need as many disabled people as possible to keep the reform process on the right track.

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See June 6, 2015 Followup

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Disability In “Mad Max: Fury Road"

After reading about it and resolving to see it for real, I am finally ready to blog about Mad Max: Fury Road, which I saw in the theater last Saturday. Instead of writing a long, comprehensive think piece about disability in the film, I want to highlight two disability-related points that moved me the most — a theme, and a moment.

Genetic Mutation and the Quest for Purity

The main villain, Immortan Joe, and his hordes of pale, spindly "War Boys" all appear to have genetic mutations, presumably the result of nuclear fallout and other unspecified environmental fouling. In a sense, they are all disabled. And apart from the typical quest for uber-patriarchial power, Joe and his clan’s motivating goal seems to be the herding and rough nurturing of “pure” bloodlines … that is, parentages that will produce “normal” children. In pursuit of this otherwise benign goal, they will resort to just about any atrocity, including the kidnapping, slavery, and forced breeding of women who appear to have “clean" DNA. In a sense, Joe and his gang are self-hating disabled people who will do anything to reach an imagined cure of perfect genetics. It’s a lot for disabled people to think about.

Discarding The Arm

As has been fully discussed elsewhere, our hero ... who is unquestionably Imperator Furiosa, (Charlize Theron) and not Mad Max ... is missing half of her left arm, and through most of the film she wears an elaborate and versatile Steampunk-looking prosthetic. There are dozens of ways that this is awesome, especially for amputees who might be watching, but really for anyone with a physical disability. However, my favorite moment about this by far comes at Furiosa’s point of utter despair, when she stalks off by herself across the sand, dropping her extra gear and clothes, shedding her prosthetic arm almost as an afterthought, then kneels and cries out in anguish and frustration.

I am not an amputee. I have never used a prosthetic. But I did wear braces on my legs when I was a child, and I wore a heavy back brace for a year when I was 10. Even when I didn’t exactly hate them, there was something therapeutic about taking them off just to be me and me alone. I interpret this scene as Furiosa stripping herself down to her essential self, without add-ons, shields, or decorations, and that includes showing her naked, uncovered, unhidden stump, or “nubbin” as one blogger called it. “Showing” it isn’t the right word, either. She’s entirely unselfconscious in that moment. She doesn’t care if anyone is looking at her, or her stump. Even though her mood is sad, even despondent, in a way it shows that at least she’s fully at home with herself.

Unlike her enemies, who want to negate and change who they are, Furiosa doesn’t care one way or another. Her prosthetic is entirely practical, too. It proves to be endlessly useful to her, but it's obvious she put no effort at all into making it look like a “normal” arm. Plus, she is comfortable enough in her own skin that in her moment of crisis, rather than adding more stuff, more padding to hide and protect herself, instead she strips things away … including her arm … to become more herself ... as if to say, "Here I am."

As usual, I doubt George Miller or Charlize Theron thought these things through explicitly. This isn’t really a movie about genetics, prosthetics, or the social politics of disability. I don’t think it’s even meant to show audiences how capable disabled people can be. But I am pretty sure it is and does all those things anyway, and I enjoyed the hell out of it.

Plus, you know … there’s ‘splosions!

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