Saturday, January 10, 2015

The Coming Debate Over Disability

Max Ehrenfreund, Washington Post Wonkblog - January 7, 2015

Funding for the Social Security Disability fund may be the next big political issue facing the disabled community. If so, this Wonkblog article is a great place to start, as we prepare to counter a wave of vague but heated fraud accusations, and divide and conquer rhetoric. Those of us with the more on-the-nose, obvious disabilities will be told that we are not the targets, it’s those lazy, cheating slobs with heart conditions (snort)breathing problems (scoff)back pain (guffaw), and anxiety disorders (raspberry) who are gaming the system.

We need to be on guard against these arguments, because they are wrong. And, while some people talking about widespread cheating and abuse of Disability certainly believe it, I’ll go out on a limb and suggest that a significant number of ideologues know it’s largely bullshit.

We will need to remember that there has always been a core minority of people who think that government support benefits like Social Security are bad … not badly managed, not at risk from cheaters, not too expensive … but BAD, even when done properly. They think the government shouldn’t be involved in supporting individuals at all. They think that it’s bad for poor people to be given money for no work. They think it’s bad for the our moral character. They think it leads people to think that society owes them a living. They believe that two or three generations of social welfare programs have resulted in a lazy, weak, entitled citizenry.

It might be an intriguing discussion for cocktail parties, but we are a step closer now to ideas like this being put into policy. Something like this has already been happening for a few years over in the United Kingdom, with pretty ugly results, built largely on anecdotal newspaper reports of a few disability “scroungers”.

We will need to watch out for the next year or two, is all I’m saying.

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Friday, January 9, 2015

Newbie FAQs: "Disabled"

FAQs spelled out in 3-D blue letters with a computer mouse in front
Why do you call yourself “disabled"? Isn’t that a negative term?

This is well covered territory. If you frequent disability blogs, everyone has at least one and probably more posts about disability terminology, including me. Since this FAQ thing is meant for beginners to Disability Culture, I will try to be brief and keep the explanation simple. I will also try to emphasize my own, personal reasons for preferring “disabled”.

I prefer “disabled” because it is short, just “negative” enough to acknowledge that having disabilities isn’t a picnic, but has enough broad un-conflicted acceptance among actual disabled people that despite what the word seems to say, it really is just a convenient label now. Most of us don't hear it as an assessment of our potential as human beings.

The other reason I prefer "Disabled" is that the main alternatives are loathsome to me:

“Special needs” reminds me too much of Al Franken's Stewart Smalley skits on Saturday Night Live … “Isn’t that special?" It is also a term that is overwhelmingly championed by parents and professionals, and not by disabled people themselves.

“Differently-abled” goes too far in trying to assert that disability is no big deal. It is a big deal ... or at least it's a deal. It isn’t the biggest deal, but it has bigger implications than, say, hair color, artistic talent, or math aptitude.

“Challenged”, (physically or mentally), strikes me as too much of a conscious effort to turn disability into some sort of moral quality. It suggests that the barriers we face make us noble. Frankly, I'd rather try to get rid of the barriers than take a bow for facing them. Also, like “Differently-abled” and “Special needs”, it is a euphemism, an effort to make something good out of something really bad. It’s like saying “Number two” or “Bowel movement” instead of “Poop” or “Shit”. Disability ain’t always easy, but it’s not Shit.

“Handicapped” is just too old. To me, it’s the disability equivalent of calling a black person “colored”. It says more about the user than the people it refers to.

And now, a brief digression about “people first” language:

I used “person with a disability” for much longer than I have used “disabled person”. I still, personally, think it is a socially acceptable and appropriate term for people who have a certain kind of relationship with their disabilities. For some people, it really does make sense to think of their disability as something they have, rather than an integral part of who they are. However, I also think there are others who just don’t feel quite right separating their disabilities from themselves. My disability is woven into just about every aspect of my life. It doesn’t make sense for me to think of my disability as an isolated attribute … like a “thing” that I “have”. So, to me, both “disabled person” and “person with a disability” are fine, and I don’t have too much of an issue with people with disabilities who choose “person with a disability”.

I guess it’s hard to be brief about this. But the underlying principle is simple. Don’t try to run away from what disability is by coming up with fancy, euphemistic things to call it.

As always, I welcome comments!

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Thursday, January 8, 2015

Motivation

What is the premise behind “motivational speaking”? I ask because I see a lot of disabled people online who identify themselves, in part, as a “Motivational Speaker”.

I have a basic idea of what that might mean in practice. I picture a disabled person who speaks to groups about living with a disability, in a positive way, in order to energize their audience into making their own lives better. But that would seem to presume certain things, that are often unstated.

Is it that disabled people who are happy and successful have some universal secrets of happiness and success that others crave?

Is it that tons of people of all kinds live lackluster, messed-up, sad and unproductive lives that need some sort of attitudinal improvement?

I feel like there may be some truth in both of these ideas. However, I also get the sense that it’s a mistake to accept the truth of these premises wholesale, without critical thought. I certainly don’t believe that disability automatically brings great insights into how to live. Nor do I subscribe to the rather popular notion that vast swathes of modern humanity have somehow forgotten to live.

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Work In Progress - Disability Simulations

After exchanging Facebook comments on the latest dubious example of raising “disability awareness” through disability simulations, I’ve started working on a post about alternatives to disability simulations. If we want people to stop these “wheelchair for a day” type events, which are almost always well-intended, what can we suggest instead? Any ideas?

Here are a couple of good blog posts on the subject:

Emily Ladau, Huffington Post - March 11, 2014

Jeffrey Preston - September 1, 2014

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Wednesday, January 7, 2015

"Friends"

"Friends" TV show poster
Annnnd … adding “Friends” to the list of potential shows to discuss on the Disability.TV Podcast.

So far it’s pretty bad about disability when it’s used for random joking purposes. And if you count fat-shaming it’s awful. However, it's not too bad when it very occasional deals with disability head-on. Remember the one where Sherilyn Fenn played an amputee dating Chandler?

It wasn’t exactly groundbreaking, but I like how she confronts Chandler, asking him flat out if her prosthetic botheres him, “Because I don’t like wasting my time”.

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Tuesday, January 6, 2015

Newbie FAQs: Introduction

FAQs spelled out in 3-D blue letters with a computer mouse in front
There’s this line of thought within Disability Culture, which says that one of the oppressions we experience is the expectation that it's always our responsibility to "educate" non disabled people ... that our first response to offensive, annoying comments or actual discrimination should always have the tone of a patient, caring teacher. How can a non-disabled person with no personal connection to disability know the right thing to do if we don’t tell them?

There are good reasons why so many of us see this as another form of oppression.

First of all, the response, “Teach me! I need to learn!” usually comes from the source of some painful encounter with ableism. Second, more often than not, the person saying this should actually know better. For example, any business owner who claims ignorance of the ADA, which will be 25 years old this July, is either grossly lazy or lying. Also, it really shouldn't take much in the way of social science or diversity training to realize customers with disabilities should be spoken to directly, not through the non-disabled person who is with them. Third ... and in all honesty this is probably the most common reason ... we just get tired of explaining the same things to people over and over again, year after year, decade after decade.

We are tired of constantly having to answer those same “Frequently Asked Questions”.

On the other hand, there is some merit in the old saying, “If you want something done right, better to do it yourself.” As sick as we are of being everyone’s unpaid disability sensitivity trainer, do we really trust others to do it for us?

As for the questions themselves, are they really things everyone should just know, instinctively? Or, are we expecting too much to come naturally to people, at least in regard to disability “awareness”?

If only there was some sort of network or communication tool we could use to answer these questions once and people could just read them. Wait a minute …

Let’s start with the questions. Here are some of the questions I hear most often from non-disabled people … and a few with disabilities, too. (Note: I will try to phrase these questions as I have heard them, sometimes using terminology I wouldn’t normally use myself).
Why do you call yourself “disabled"? Isn’t that a negative term?
Why are so many businesses and buildings still not handicap accessible? Isn’t that against the law?
What's wrong with being “inspirational”?
What’s wrong with special schools, group homes, and day care programs for the disabled?
Isn’t it unrealistic to close sheltered workshops? Most of those people will never be able to get a real job. In a workshop they’re at least busy, socializing, and making a bit of money. 
Isn’t it okay, if someone’s really severely disabled, for them to decide they don’t want to live anymore? Isn’t it all about dignity and choice?
How can it be better to place special needs kids in regular classrooms, where there’s no way they can keep up and the teachers have a hard enough time teaching all the normal kids? 
Isn’t there a lot of abuse of the term “disabled” these days?  I mean, parents getting their kids labeled so they can collect SSI, and unemployed adults getting their doctors to declare them disabled so they can collect Disability. This is a big problem for real disabled people, right?
Just between you and me, it’s different with mentally challenged people, isn’t it? I mean, they can’t be independent like you, can they? 
I broke my leg skiing last year. I had a cast for three months and had to go around on crutches. So I know what it’s like to be disabled.
If we really want city councilors to understand accessibility problems, why don't we make them spend a day in a wheelchair? That would teach them!
Over the next several weeks, I’ll try to answer each of these FAQs. I would love to see other, similar questions that you hear a lot from people who are “disability newbies”. I invite you to post them in the comments below!

Monday, January 5, 2015

Let’s Make A Deal

Icon of 3-D stick figures, one red, one blue, shaking hands over a conference table
The #StopAbleism2015 hashtag got me thinking. What would a workable end to ableism entail?

For most of my adult life, I think I have had in mind some kind of deal, a social contract between disabled people and the rest of society. Something like:

We (disabled people) agree that the rest of you (mostly non-disabled people) don't have to know about our specific disabilities, anticipate our accommodation needs, or understand how we feel about being disabled. In other words, you are all off the hook from having “disability awareness". We’ll even forgive the stupid things you sometimes say about disability, as long as it's clear you're not being intentionally mean or provocative.

In return, we expect that our communities and everyday routines will be accessible to people with all kinds of disabilities. Simply following established accessibility standards and adopting a few basic customer service strategies would be a great start. It doesn't require much special knowledge or training … and we’re happy to help you figure it out if you have questions. These things should happen pretty quickly, without constant prompting or advocacy from us.

For the stuff we don't expect you to anticipate … needs that are very specific to each of us and our unique disabilities … all we ask is that you remain open-minded and flexible. We will tell you what we need and what works for us. All you have to do is listen and do what we ask, within reason, safety, and your own abilities.

To put it more simply:

We won't expect you to know and understand everything about everyone’s disability, and we won’t hold you responsible for perfect social behavior at all times.

We do expect you to do all that you can do to accommodate us, with tools and techniques that are widely and easily available. We also expect you to listen to us and use us as guides on how to treat us.

This "deal" is based on a fairly simple premise:

Access > Awareness

How does that sound?

Sunday, January 4, 2015

Saturday, January 3, 2015

#StopAbleism2015

3-D blue hashtag symbol
Next week I plan to start a series of post intended to repeat then answer Frequently Asked Questions I have heard from people curious about Disability Culture and Disability Rights. I have heard them mostly from non-disabled people, but from plenty of disabled people, too. I hope that over time, these collected FAQs will serve as a partial introduction to disability for the uninitiated.

Another way to learn about disability from the disabled person's perspective is to get on Twitter and browse some disability-related hashtags. Right now, there's a really great one going on ... #StopAbleism2015.

Like most hashtags, the quality and relevance varies. Some restate familiar themes, often really well. Others may seem extremely specific and / or obscure. On the other hand, one of the most important things for newbies to learn about disability in society is that the subject is extremely broad, and properly inclusive of things you might not think relate to disability at all.

#StopAbleism2015 ... have a look!

Addendum: @SFdirewolf has complied a Storify collection of the #StopAbleism2015 hashtag. Check it out if you have limited time, or don't use Twitter.

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Friday, January 2, 2015

What’s Gonna Happen In 2015?

2015 in red 3-D numbers
In answer to yesterday’s New Year’s Day question … Here are five things I think might happen in 2015. Because I don’t really know how each of them will unfold, they are questions rather than predictions:

1. What will Congress do to shore up Social Security Disability funding? Can we possibly hope to see new funding allocated without another round of panicky stories about how SSDI is full of fraud and “out of control”?

2. Will The ABLE Act get a real, robust test, with lots of diverse families and disabled people opening accounts and using them for a wide variety of purposes? Or, will it be used mainly by wealthier families as a slight improvement on Supplemental Needs Trusts?

3. Will we see a major shift in public opinion against Sheltered Workshops, a backlash in defense of them, or will this issue remain a debate taking place mostly within the disability community?

4. What will happen to home care in the United States when the new overtime rules go into effect? Will it improve things for both workers and the people they serve? Or, will states and agencies just respond by cutting hours of service, harming disabled people and their home care aides?

5. Will the general public start to view the murder of disabled kids at the hands of “stressed” parents in a different light? Or, will these incidents still be discussed mostly as sad stories of parents frightened by the future and unable to get the “support” they say they need?

You can probably tell how I hope these things pan out. But, while I tend to be pessimistic, I really don’t know what will happen. Maybe nothing will happen at all. Maybe things will turn out for the worse on all of these issues. But maybe, against odds, some good will emerge.

What do you think?

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Thursday, January 1, 2015

Happy New Year!

Happy New Year in big, 3-D red letters, with confetti

I thought about doing a 5 Predictions For Disability World in 2015 post, but honestly entire years go by without anything truly significant happening in the disability community as a whole. There are always plenty of stories of individual triumph, tragedy, and injustice, but real, tectonic changes in the conditions under which we live are very rare.

What do we think? Will anything really big happen in 2015?

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“Like” on Facebook

Wednesday, December 31, 2014

Disability.TV Podcast: Looking Back, Looking Ahead

Logo of the podcast, photo of an old style tv set with disability symbols on the screen
The most notable development for me in 2014 was the start of the Disability.TV Podcast. Beginning in August, several guest hosts and I dug into disability depictions on several TV shows of the past and present. All of the podcast episodes are available on the main podcast site, and through free subscription using iTunes or Stitcher. If you want to jump right to the TV show discussions, here is the list so far:








I plan to go back to weekly episodes sometime in January, 2015. Which TV shows with disabled characters should we look at the year ahead? What other related topics should we discuss? I would really appreciate you letting me know by taking the Podcast Direction Survey.

Meanwhile, look for the next episode this coming Sunday, including my list of the Top 5 Disability On TV Events of 2014.

Wider Application


Via The Cryptic Cripple Tumblr blog.

Really well done. Similar posters could be made to deliver the same type of message to disabled people of all genders and ages, too, including disabled children and teens, and elderly people with age-related impairments.