Site Work ...

I'm working on the bigger website today. Actually, after starting on it this morning, one thing led to another, and I'm starting from scratch ... new server, new website platform, and hopefully a simpler kind of forum.

Funny how trashing two months of work can be freeing instead of frustrating. Feeling excited and focused here!

Dear Modern Manners Guy ...

Here is my letter to the Modern Manners Guy Podcast:

Dear Modern Manners Guy:

Could you please do a podcast episode on "Disability Etiquette?" Grammar Girl did a great episode of her podcast on appropriate language regarding people with disabilities, but what about manners and appropriate behavior? Is it okay to open doors for a wheelchair user? Can you pet a guide dog? Is it ever appropriate to ask a person about his or her specific disability?

I have worked in the disability rights field for over 20 years, and I have disabilities myself. So, I have my own ideas on questions of disability etiquette. There are also many guides out there. However, most of them, in my opinion, focus too much on specific rules and not enough on the principles behind them.

Modern Manners Guy, I'd love to get your take on this!

The Gang's Not All Here

The photo that broke a mother’s heart

Thandi Fletcher, The Province - June 14, 2013 (via Crazy Crip Girl)

I think "awareness" is over-rated as a word and as a concept. However, cases like this I think are very specifically about "awareness" … the lack thereof. Only the people there at the photo shoot know what actually happened, but I can easily imagine a depressing combination of harried, hurried teachers, antsy kids, and perhaps a subtly enforced lack of creativity and innovation … an adherence to "the way we do things" that stifled even the most basic ideas for including this cute kid properly in his class photo. Most of all, I suspect that it all hinged on the adults in charge never even thinking that maybe the kid would feel humiliated. He's in the photo, after all!

Also, there's this … the photo broke a mother's heart, but what about the kid's? Actually, my guess is that he's defending his teachers, wishes his Mom would just let it go, and is embarrassed by all the fuss. When he's 18 or so, he'll be angry in retrospect.

Again With The Theme Parks

Amusement Park Faces Backlash Over Disability Access

Shaun Heasley, "Disability Scoop" - June 17, 2013

This case is even more interesting than the Great Disney World Controversy. Here we have a theme park that seems to be trying to be helpful to visitors with disabilities in a more targeted, discreet, and fair way. Under their new policy, you have to wait like everyone else, but you can leave the line and go do other things until it's your time to enter the ride. In effect, it removes the physical aspect of the wait, leaving only a mental wait. It's a policy designed mainly for people with physical disabilities.

For people with certain cognitive or mental impairments, though, the problem isn't literally standing in line, it's the wait itself … the gap between the moment they decide to take the ride and the moment they're allowed to do so. There's a risk of stereotyping here, but it does sound right to note that people with autism, especially, might find it all but impossible to tolerate waiting, and incapable of making the mental adjustment necessary to say to themselves, "Well, at least I can go do something else until it's my turn." The parents complaining about the new procedure may have a point that the new accommodation simply doesn't match with that specific kind of disability.

But wait! Something called the "Autism Society" disagrees! They think the new policy is accommodating enough, and that having Autism shouldn't exempt people from waiting their turn. I don't know if they're right, or if they have the wrong idea about reasonable accommodation, but it's an interesting example of an important phenomenon … a disability organization with policies and philosophies that don't fully mesh with individuals with disabilities and, especially, their families.

Maybe A Podcast

I'm thinking about starting a podcast about disability on television.

The logical starting point for what I want to make the podcast is to begin with weekly episode recaps of NBC's new, reimagined "Ironside", and "The Michael J. Fox Show, which are both set to debut in the fall. During breaks in these shows … or if one or both of them fail … I could recap selected episodes of the original "Ironside", the Sundance reality show "Push Girls", and do one-off special episodes on disabled characters in other shows … like the Deaf political strategist Joey Lucas on "The West Wing," Dr. Kerry Weaver on "ER", and of course as many as three characters on "Game Of Thrones": Tyrion Lannister, Bran Stark, and Hodor.

In terms of style, I'm thinking some combination of the exhaustive, scene-by-scene, snarky but appreciative "Downton Abbey" podcast, "Up Yours, Downstairs!", and the more compact, analytical approach taken by "Mission Log: The Roddenberry Star Trek Podcast". I love both of these podcasts. I'm amazed at the hours I can spend listening to them and barely notice the time pass. They have the perfect mixture of seriousness and snark. The hosts are fans of their shows, who love the shows as much for their failures and flaws as for their brilliance. I think I like podcasts better than the TV shows they cover.

Surely the world of disability television is wide and diverse enough that there will be plenty to say, appreciate, and sure … to mock. Now I just need a co-host. And, you know, a basic understanding of how to record, edit, and post a podcast.

About Page Hits ...

This is my 102nd post. Blogger can tell me how many hits each post gets, and I've finally noticed that one post has vastly more hits than all the others … a post with the phrase "Inspiration Porn" in the title. Ergo …

1. A large portion of my so-called hits are probably from various "bots", plus perverts.
2. When I post on something really important to me, I should figure out a way to include the word "Porn" in the title.

#rookiebloggerrealizations

Meanwhile, Across The Pond ...

PIPs won't help disabled people out of deprivation

The government's new disability benefit is based on an outdated medical model that cannot assess true needs or costs

Stef Benstead, The Guardian, UK - June 12, 2013

I've been reading incomplete bits and pieces about how the Cameron coalition government in the United Kingdom is, apparently, completely redesigning its system of financial support benefits for people with disabilities. It seems fairly clear that whatever logical explanations and sensible improvements these changes might include, the 'bottom line" will result in significant cuts to individual benefits. I also read hints that some people might be dropped entirely, determined by "reformed" rules to not be disabled at all.

I really need to read more about this. Even though the new plan is being widely panned as a back-door method of simply cutting benefits, I'm more intrigued by hints that both the pre-reform and post- reform system might be a lot simpler and perhaps more empowering than the complex patchwork of benefits and programs we have here in the U.S. Of course, Great Britain has universal health care for everyone, which is a major difference with the U.S., where health care is still a major complicating factor for disability benefits and people with disabilities' aspirations. The other difference seems to be that UK assistance for people with disabilities relies more in a single, unified, and flexible financial benefit for each person … in other words, a monthly check … intended to cover all of their "special" needs, including perhaps adaptive equipment and personal care. If that's correct, it sounds like a much better system, and one we maybe should emulate here.

On the other hand, it also makes it easier to reduce support than it is in the U.S. Here, a cut in, say, Food Stamps or housing subsidy hurts, but may be compensated for by other benefits and supports that have their own sources, that have to be reduced individually, with separate legislation. Drawing all your eggs from one basket is simpler and more flexible, but if the basket suddenly has fewer eggs, there's no where else to go to make up the difference.

I wonder if American disability activists are watching what's going on with their compatriots in Britain?

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.