This Is Big ...

... This is great!

RI to close all 'sheltered workshops' for disabled

Erika Niedowski, Associated Press / Boston Globe - June 14, 2013

… And according to the article, 24 states already have similar policies to eliminate sheltered workshops.

Ableism? Or Loss Of Privilege?

From a Wheelchairproblems tumblr post ...

"Hahahahha omg the ride from the airport to the hotel was so funny I can’t even. My stepdad thinks everyone is gonna kiss his ass and its just not like that."

I can only speculate on what exactly happened on that ride, but she might be hinting at something familiar to me: a somewhat privileged, sheltered person, used to being respected and treated well within a small community, suddenly exposed to how most people are treated when nobody knows who they are.

My Dad had an experience like that one time when he visited me. His car unexpectedly died, so he had to shop for a new one on short notice; he couldn't wait till he got back home. Although he had lived and worked here for decades, and was a widely known and respected physician here, he'd been away for over 15 years, so he was essentially a stranger in this town. When he walked into dealerships wearing his vacation casuals, they treated him like a random customer at best, at worst as a bum. It was a rude shock for him. He wasn't "Dr. Pulrang" anymore; he was just some guy, and kinda shabbily dressed to boot.

I've experienced something like this, too. Yes, I have disabilities, but most of the other metrics of my life place me well within the category of "privileged". For much of my life, despite some difficulties and disappointments, I was the sort of person with a disability who sincerely thought that the worst problem we face is people being too nice to us. You know ... condescension, baby talk, "you're such and inspiration."

I still haven't experienced much in the way of truly biting discrimination ... scores of failed job interviews, bureaucratic grilling, homelessness or opportunistic mugging ... but at 46, I've lived long enough to have experienced many situations where to others, I was just another weird guy … someone perhaps to be treated courteously, but to be pawned off as soon as possible. I've also been in many situations … as it happens, a lot in travel … where "epic fail" of accessibility features and accommodative services were the norm, rather than the exception, and where I was clearly just another annoying object to be moved and tidied away.

It makes me wonder whether anyone has done a sociological / psychological study of how well-off white people, in particular, react and adapt to the change in social status that happens when they (or their children!) confront a new disability. How much of what we call "Ableism" or "disability discrimination" us really us experiencing a loss of relative privilege?

Relax, Embrace The Internet

I used to worry that the Internet would become a disability ghetto. I'm not worried about that so much anymore.

Although I get the impression that I'm not as obsessed with social media as some, I both use and enjoy Twitter, blogging, and to a somewhat lesser extent Facebook. I also get most of my general news and commentary on websites. I listen to podcasts. I'm not a gamer, and for some reason I never took to texting, but I have a laptop, smartphone, tablet, and AppleTV. In other words, I'm quite comfortable with living, working, and playing on the Internet. I'm no Luddite.

Yet, I've always been wary of claims that the Internet offers some very special, amplified benefit specifically to people with disabilities. My main reservation has been similar to what a lot of technology-skeptics fear for everyone … that the "virtual" interaction will replace "real" interactions. There's a higher risk of something like that for people with disabilities, especially when technology and social media are held out as solutions to the problems of accessibility and prejudice, when perhaps they are less solutions than avoidance mechanisms.

The answer to neighborhoods that aren't wheelchair accessible is more accessibility, not shopping, socializing, and working on the Internet, stuck in your bedroom. The answer to worrying about how people will react to your disabilities isn't to restrict your interactions to a virtual world where people don't have to know that you look weird or talk funny. Most of all, I'd hate to see the availability of the Internet used as an excuse to stop worrying about accessibility, isolation, and discrimination.

That's the way I thought for a long time, but now my thinking has changed a bit.

At this point, I think that the "online world" has to some extent grown past those concerns. First of all, everyone lives at least a portion of their lives online, whether they have a disability or not. If anything, there's a risk of people with disabilities falling behind in access to the Internet; I'm a lot less worried that the Internet will become an isolating trap for people with disabilities. I can still happen, but so far, the Internet is more of a liberation. Second, since I started this blog and website project, I've been blown away at how many people with disabilities use the Internet to reveal themselves, not hide … both their thoughts and their appearance.

So, articles like this one about disabled teens using online services to socialize and "flirt" don't make me as concerned as they once would have done. Anyway, people with disabilities should, if anything, be open more open whatever tools are at hand to live the kind of lives we want.

For Disabled Teens, Flirting Can Be Easier Online

Maggie Freleng, Women's E-News.org - June 11, 2013

Grammar Girl Gets It Right

Every week I enjoy listening to several of the Quick and Dirty Tips Podcasts … 5 to 10 minute audio programs that each cover one short aspect of topics like grammar, personal finances, parenting, etiquette, public speaking. I did a quick search of the website and found that several of the Quick and Dirty podcasts have done episodes on disability issues.

The first one I listened to is Episode 155 of the "Grammar Girl" podcast: "What to Call People With Disabilities"

"Grammar Girl" Mignon Fogarty discusses the proper words and phrases to use when writing about people with disabilities. Her advice is very correct and up to date, and I don't disagree with any of her choices. She advocates "people first" phrasing, confirms that variations on "handicapped" are no longer preferred, (except for a few phrases like "Handicapped Parking"), and even goes out of her way to explain that made-up words like "handi-capable" and "differently abled" are well-meaning but condescending and should be avoided. My only quibble is that the Grammar Girl usually explains why language rules and customs are as the way they are, but in this podcast she basically says it's because people with disabilities prefer it. I think she could have said more about the fact that people first construction and more neutral terms are also more linguistically accurate.

Overall, though, this is a very good guide to disability language that many professional journalists could learn from.

Smart Ass Cripple Is Beautiful, Part A Million

I love when a story leads you somewhere unexpected.

What he's talking about has never happened to me. Maybe it's because I don't use a wheelchair. Or, maybe because I live in a fairly small town, where if people don't know me, they probably know my face and form. That kind of charity only really happens with strangers, I think. People can imagine the perfect recipient, but those illusions crumble as soon as they get to know the person a bit, and find out how complicated they really are.

Workshop or Sweatshop?

School for Disabled Accused of Running Sweatshop

ABC News / Associated Press - June 12, 2013

Whatever else it's doing for good or for ill, once again it is good to see the Justice Department aggressively pursuing meaningful disability cases.

So, what's the difference between a disgusting "sweat shop" and one of those charitable "sheltered workshops" people in your neighborhood raise money for? Lets just say it's an awfully a slippery slope ... between non-profit and for-profit, between a work training program and just plain work, between a safe environment with lots of extra help and supervision, and a closed-off, segregated place for people with disabilities to be hidden away while their every moment and movement is regulated and micromanaged.

Lots of people have jobs that suck. Sheltered workshops suck in a unique and particular way, whether or not their indignities rise to the level of criminality.

Now THAT'S Inspirational

My first post from cool Tumblr to stodgy old Blogger blog … Is this thing on?

I hope so, because this is awesome sauce.

Guy in a wheelchair subdues convenience store robber.

Via Wheelchairproblems.

Tywin Lannister: Father Of The Year

Last night's season finale of "Game Of Thrones" included a scene between Tyrion Lannister and his father, Tywin, that I suspect affected people with disabilities differently than most viewers. Tyrion (a.k.a., "The Imp", "The Half-man") challenged Tywin to name one time he truly put the family's needs before his own. Tywin answered by saying that when Tyrion was born, he wanted to drown him at sea because of his deformity, but didn't, and instead raised him as his son, because he is a Lannister … in other words, for the good of his family.

Now there is a few lines of dialog packed with multiple, and multiply-layered meanings for people with disabilities. What first came to my mind is how parents get praised for raising children with disabilities, justifiably, but with the implication behind the praise that the selfish alternative … the thing they'd have preferred … would be to reject the offspring, or endure the more short-term grief of them dying on their own.

Tywin is more literal and unapologetic about it than most real-world parents. Yet, the thought was there for me ponder as soon as I saw the scene.

Disability In The News

After several months of scanning the news articles that come up daily on Google News using "disability" and "disabled" as topic filters, the overall impression I get is that at the moment, disability news coverage is about three things:

• Government-funded disability programs either going broke soon or grinding to a halt.
• People pretending to be disabled or otherwise stealing disability benefits or privileges.
• Inspiring local stories about individual people with disabilities overcoming adversity.

It's not about accessibility, employment opportunities, or ongoing, persistent institutionalization ... except for occasional coverage of the absolute worst examples of institutional abuse.

Probability For Dummies

Just a reminder in light of news about the latest random mass shooting …

IF the majority of random mass shooters have mental health impairments, it doesn't at all mean that the majority of people with mental health impairments are potential random mass shooters.

I don't know whether most or even many mass shooters are mentally ill anyway, though that's the impression left by news coverage. It seems like something that can be measured and known for sure, but I'm not sure where to find that information. But if it IS true, it says very little of any use about people with mental illness in general. It might, however, suggest that better understanding mental illness might help us understand random mass shooters, which might help prevent these terrible incidents.

Disney Gets Tough

I'm glad to see that the worst problem in the world regarding people with disabilities is finally being dealt with:

Disney cracking down on disabled tour guides at theme parks

Associated Press / Orange County Register - June 7, 2013

Look, I posted about this before, and I agree that its unethical for people with disabilities to use their disability status to usher other, non-disabled people to the front of lines. It's also unethical for tour guide companies that hire people with disabilities specifically because they can do this, and it's unethical an extra layer of disgusting for the families that pay big bucks for this "service". I just don't think it's the biggest scandal in the disability world, by a longshot.

Also, do people with disabilities really value going to the head of all the lines the lines due to their disability? It sounds like one of those "privileges" that non-disabled people like to hand out, while they skimp and fudge their way around true accessibility and equal opportunity. You need too much care so you have to live in a nursing home, but if you are fortunate enough to have a car, why you can park in handicapped spots!

On the other hand, I haven't been to Disney World in decades, and I understand those lines can be incredibly long, so maybe its a perk worth preserving.

"Push Girls" and "My Gimpy Life"

I've been watching two "TV" shows about wheelchair users that have a lot in common: "Push Girls" and "My Gimpy Life". Both take a little effort to find, Both are worth the effort.

"Push Girls" and "My Gimpy Life" are about young women who are wheelchair users, who became disabled at some point due to accident or illness. The women in both are quite beautiful in the conventional sense. They all live and in various ways struggle to work in Hollywood ... the city and the industry. In both shows the women handle their disabilities with grace, humor, and assertiveness, while acknowledging how physical barriers and prejudices crop up every day. "My Gimpy Life" is fictional, while "Push Girls" is a reality show. Yet, they both feel realistic, and both attempt to portray the realities of living in a wheelchair honestly.

One major difference between these shows is how they are made.

"Push Girls" is a reality series on the Sundance Channel. "My Gimpy Life" is a web series posted to YouTube. Although it is on a cable channel with relatively low viewership, "Push Girls" is a fully professional television show. "My Gimpy Life" is more like semi-pro. The actors and crew are all professionals, and the quality is quite high, but like many web series, it is self-produced without a studio or company behind it, financed by donations fans and through project funding sites like Kickstarter. By necessity, "My Gimpy Life" is also shorter. Episodes last around 8 minutes, while episodes of "Push Girls" are a full half hour in conventional TV format.

By the way, "My Gimpy Life" contains un-bleeped profanity. "Push Girls" is relatively free of it, not surprising for a mainstream, general-audience show. However, the swearing on "My Gimpy Life" adds authenticity, and its nothing like, say, "The Sopranos" or "Deadwood." Both shows talk fairly frankly but appropriately about sex.

The biggest difference between these shows is that "Push Girls" is a more or less "serious" show, which shows all facets of these women's lives, the good, bad, and ordinary, where "My Gimpy Life" is reality-based, but firmly a comedy. If that makes "Push Girls" sound more profound, I don't mean it to. Both shows are profound in their own ways.

I haven't drawn any other big conclusions about these shows, except that I want more of both.

"Push Girls" on the Sundance Channel

"Push Girls" on Netflix

"My Gimpy Life" on YouTube

High Maintenance

There's no justification for ableism, just as there's no justification for any kind of prejudice. In my experience, though, when it comes to ableism, there are explanations. For example, thing … we are pretty "high maintenance".

"High maintenance" is an insult usually applied to individuals perceived by someone else as being picky, demanding, never satisfied with the standard, but always asking for a customized version of whatever is on offer. It's the person who always wants their salad dressing on the side, milk instead of cream in their tea, their bacon extra crispy in a restaurant. It's the person who always insists on taking extra time to get ready, is easily offended, or who must hear from you by phone or text at precise intervals. "High maintenance" tends to be applied disproportionately to women, (that's called "sexism"), even though the world is full of controlling guys who could just as easily be called "high maintenance" if we didn't already call them "abusive".

"High maintenance" begins with someone's collection of very specific, very uncommon needs, but it's really about how other people perceive the needs and react to them. Behind the phrase, I think, lies two assumptions: one, that there's something phony and attention-seeking about these needs, and two, that since the standards always seem to be shifting, we can never really satisfy the "high maintenance" person and might be better off steering clear of them entirely.

Well, people with disabilities have all kinds of "special needs" and requirements that other people very quickly find can be a pain to meet. We need buildings to be accessible, and since many still are not, that takes work and expense. Almost accessible isn't good enough, either; one step is as much of a barrier as a while staircase. Some of us need to use different modes of communication than most people, such as Sign Language, large print, or braille. Many of us need more time to complete assignments or tests in school, have lists as long as your arm of foods we can't eat, and may not even be able to sit in an ordinary chair when we visit your house or go with you to the movies. We have to plan ahead twice as much as others, and we have fewer alternatives to choose from when things dn't go right.

No matter how well prepared and independent we are, our needs are not just our own, they belong to everyone we come in contact with. From a purely technical standpoint, we are just more "high maintenance" than most non-disabled people.

Here's where there are two crucial differences though:

First, our "special needs" are real, iron-clad, entirely practical, and inescapable. We can't decide to not need them. We can't shrug them off just to make things easier on others. Often, the only way to do that is to stay home where presumably we've adapted our environment as fully as it can be. But if we want to live a life, we have to impose a bit on others, which means making a daily decision that it's okay to be a bit "high maintenance". So, if it sometimes seems like we don't care how much of a bother we are being, understand that it may be the only way we can deal with our situation without retreating into a cocoon.

Second, it may seem like nothing's ever right for us, but it just seems that way because the needs are unfamiliar to you and require more effort than you may be used to giving. The majority of us who are not truly "high maintenance" in the worst sense, (don't get me wrong, some of us are, we're human), will do our part to make our needs understood and as easily met as possible. Here's where the unique beauty of accessibility modifications comes in; the more accessible the world becomes, the less "high maintenance" we will be.

Finally, if our needs sometimes seem endless, ill-timed, and annoying to you, imagine how they feel for us. Though it's not a nice thing to do, you do have the option of walking away. We can't. So, sometimes, some days, we feel the need to shed the humble self-deprication, and embrace our inner divas ... to be "high maintenance", confidently and without apology.