Saturday, August 31, 2013

TV Shows

To elaborate on what I have in mind for this podcast idea, I would start off with episode recaps and discussion of two shows set to debut this Fall:

Ironside (New Edition, premiers October 2, 2013 … Remake of the late '60s, early '70s cop show about a brilliant investigator who uses a wheelchair, and his support team. In addition to figuring out whether the new show is any good, the obvious thing to do will be to compare and contrast the remake with the original starring Raymond Burr. Will the new show try to break new ground on disability issues? Will it strive for greater realism, or just more fireworks?

The Michael J. Fox Show (premiers September 26, 2013 … The actor will play a popular New York City news anchor who has Parkinson's Disease, and decides to try going back to work. Fox has Parkinson's Disease himself. How much of the comedy and momentum will depend on the character's disabilities? Will viewers be able to process a steady diet of disability-based comedy?

And then there are currently airing and past TV shows to discuss, such as:

Game Of Thrones … Two major characters, Tyrion Lannister and Bran Stark, and one minor character, Hodor, make this possibly the most disability-centered show on television, maybe in television history. Yet, disability isn't even close to being the show's main theme. Are these characters just fun, or are they saying something about disability?

House, M.D. … Dr. Gregory House's chronic leg pain and related drug dependency are recurring themes. Does the show suggest that House's chronic pain is responsible for his constantly mean, antisocial behavior? What are we supposed to think about the relationship between his pain and supposed drug addiction?

Life Goes On … The Sherwood family's son has Down Syndrome, as does the actor who plays him on the show. Is this show just too dated to be relevant? Did it succeed in making a disabled character an important, but not dominating part of a show about a full family? Why did the writers have to name the character Corky?

The West Wing … The President's Multiple Sclerosis has recurring political and physical effects. There is also an occasional Deaf character, a political consultant named Joey Lucas, played by Deaf actress Marlee Matlin. My recollection is that they the show handled the disability plots as well as all the others, but in retrospect, are these disability portrayals truly interesting in their own right?

The Big Bang Theory … Is the character Sheldon Cooper supposed to have Asberger's Syndrome? Is it an intentional portrayal? Is it becoming one?

Glee … This show has at least one regular character with a disability, Artie, who is paraplegic and uses a wheelchair, and a recurring character, Becky Jackson who is a student with Down Syndrome and protégé to the cheerleading coach. How do disability portrayals turn out in a show that's all about slapstick, surrealism, and sentimentality?

And then there are the movies ...

Don't forget to vote on whether or not you like this idea, in the poll over to the right.

Friday, August 30, 2013

Pardon Me, But Fuck!

The preceding swear is not for dramatic effect, nor is it link-bait. I really mean it. As soon as I write something I think is clever on this blog, I go and read Smart Ass Cripple, and my illusions are shattered. But, I do it anyway because he's just so great.

Everything In Moderation

I can't know what it's like to be a non-disabled person, but I'll bet one of the most confusing aspects of disability awareness for non-disabled people is our dislike of being admired.

For one thing, what's wrong with a person who gets angry at being praised? For another, as soon as we get done saying for the umpteenth time that we're not "inspirational", we start complaining about the cruelty and thoughtlessness of strangers. So, what is it, then? Are people supposed to mean to us or nice?

The answer is ridiculously simple … moderation.

Be nice, but not too nice, or for no reason.

Meanness is never okay, but if you're in a bad mood, don't sprain something trying to be nice. Just remember that there's a thin line between disapproval and cruelty. And don't use our disability as a special focus for your anger or resentment issues.

Pretty simple, I'd say.

P.S.: Also, stop saying "retard", to anyone, in any situation. And we get to say "cripple" if we want, you don't.

Again, not too difficult.

Question For Disability Nerds ...

Earlier this summer I posted some thoughts about starting a podcast about disability in movies and television. I haven't gotten very far yet with that idea, except that my list of potential topics has grown exponentially. I keep thinking about films and shows I'd forgotten, and finding out about ones I've never seen.

The idea still seems sound, and as far as I know there's no consistent, ongoing content looking at disability in popular culture from both a disability-aware standpoint and … this would be the key for me … from a TV and movie-friendly perspective. In other words, I'm not interested in a highly politicized or harshly judgmental treatment of the subject. I don't mind criticizing bad depictions, but I love TV and movies, so I don't assume their depictions of disability will all be bad. I also don't think "bad" is a simple concept here. It depends on the context, the intent, and the effect, all in equal parts. Plus entertainment value.

So, would you visit a website and / or listen to a podcast about how disability is depicted in movies and on TV shows? Vote in the poll in the right hand column.

Monday, August 26, 2013

On The Road

I'm in St. Louis for a class on grant writing. There are accessibility and accommodation stories to tell when I have time.

Thursday, August 22, 2013

More About Home Care

Rick Perry loves the part of Obamacare Peggy Noonan hates
Ezra Klein, The Washington Post - August 22, 2013

Another followup on the Community First Choice component of the Affordable Care Act, from the "Wonkblog" …
"The program is so irresistible that even Texas Gov. Rick Perry is asking if his state can be part of it."
There's one aspect I'm still not clear about. From what I've read so far, Community First Choice will fund home care that is provided for pay by family members, but will require there to be a third-party involved who isn't a family member in order to guard against conflict of interest. That seems to be the case when the person with a disability is severely cognitively impaired and has a guardian. But what about the majority of home care users who make their own decisions? Will they have to have a third-party manager or watchdog if they want to hire their mother, father, sister, brother or spouse? Personally, I think it's a good idea, but I don't think it should be required. I've known people who are fine with everyday direction of their own care, but frankly could use some help and support to deal with really tricky personnel or administrative problems. I've also known plenty of home care users who are more than capable of running their own show, and dealing with whatever problems arise.

Wednesday, August 21, 2013

"Wonkblog" Kicks Ass

Peggy Noonan attacks Obamacare for doing what Peggy Noonan wants Obamacare to do
Ezra Klein, The Washington Post - August 20, 2013

This is an outstanding article that almost entirely clears up the apparent issue I wrote about a few days ago, about how Obamacare may or may not affect parents being paid to provide home care to their sons or daughters with disabilities. In short, the problem originally cited turns out not to be a problem at all, and it's possible that anxiety about the confusion was whipped up on purpose to discredit the Affordable Care Act itself.

Obamacare will extend good coverage of home care to many more people, in states where it is now absent or minimally offered. It will allow family to be paid care providers. At the same time it will require a non-family member to oversee design of the care plan, thereby at least partially solving the potential conflict of interest problem, as well as providing possible troubleshooting should family care take a sour turn.

I can't emphasize strongly enough that anyone interested in how the Affordable Care Act develops should read The Washington Post "Wonkblog" daily. They are providing in-depth, dispassionate, and very readable analysis of every aspect of the law, every step of the way. It's an essential resource.


P.S.: If you want to know how some piece of health care policy will affect people with disabilities, check to see what ADAPT thinks. They know their stuff, and when it comes to partisan politics, they are entirely agnostic ... or to put it more crudely, they don't give two shits about Democrats or Republicans.

That Nasty Letter ...

As suggested by one of my Facebook friends, I'm not going to post a picture of the nasty letter from "one pissed off mother", aimed at parents of a child with autism who lives in her neighborhood. I will link to it, however, so you can read it if you want. Be warned: the letter isn't just insensitive, it is filled with hate and rage, and includes eliminationist language.

Ordinarily, I don't get into news stories and social media memes in which everyone piles tons of fairly obvious scorn upon specific individuals who are especially ignorant or depraved. I'm more of a systems advocacy kind of person, and hating on even very hateful individuals, I think, tends to divert energy away from dealing with institutional problems.

That said, I do think that this is an exceptional case. The letter clearly and specifically progresses from the writer's personal annoyance, directly to some very disturbing life and death ideologies. It's considered bad form to invoke Hitler in a debate, but in this case, the Nazi comparison is quite apt.

I'm not genuinely afraid that this signals some fundamental societal shift in that direction. But it does put the lie to a pretty common fallacy among some of us in the disability community, myself included … that ableism is mostly benign ignorance, and that people don't really "hate" us. "Pissed off mother's" letter is a useful reminder that not too far underneath our veneer of enlightened progressivism, there's still a lizard brain that is disgusted by and afraid of "others". And people who look funny, move funny, act funny, and sound funny are definitely "others."

Don't get me wrong, I'm grateful for the veneer, and I think lots of people don't react negatively at all to people with disabilities, even down in their lizard brains. But we'd be fools to think that a mere 50 or so years of relatively enlightened behavior and policy have entirely undone the impulses that led to forced sterilization, warehousing, freak shows, and the Nazi T4 program.

Midweek Musical Interlude

I'm listening to the new Superchunk album, "I Hate Music", so I figured it would be a good time to post their fantastic cover of The Cure's "In Between Days".

Tuesday, August 20, 2013

The Pros and Cons of Sexy Photos

This blog is pretty weak on photographs. That's partly because I'm a terrible photographer, and partly because I haven't completely figured out the legal and ethical issues involved in reposting interesting photos I see on other disability-related websites. Do I need permission to post them on my blog or website? Permission from whom? What if I provide a link back to the source, is that enough?

Still, just seeing the amazing photos other peoples' blogs and websites is part of what got me excited about disability art and expression again, after a long period of feeling stagnant about them.

For example, there's the Tumblr blog, Disabled People Are Sexy. It's worth a look.

What I like about these photos is that they call up lots of strong emotions in me … a wide variety of feelings, but none of them anything close to pity, revulsion, or depression.

Of course, sexy pictures of people with disabilities may simply objectify and marginalize in their own way, just as pictures of pitiful children in braces did back in the days of Polio, and toddlers with leukemia do today on Facebook. The difference, I think is that it seems at least like the people in the "Disabled People Are Sexy" photos want to be photographed, want to be seen. Being in these photo shoots seems to be liberating for them, not humiliating. Hard to say though. It's probably a good idea to keep an open mind in every way with these pictures.

To that end, I also recommend reading a reply by the blogger to a negative comment:

Monday, August 19, 2013

How Do You Fire Your Family?

Federal officials reverse course on disability provision of Affordable Care Act
Yuxing Zheng, The Oregonian - August 16, 2013

I think people who use in-home long term care should be allowed to hire family to provide care if that's what they want. My only questions for those who do would be:

Could you fire your Mother, Father, Sister, Brother or Spouse if they were doing a crappy job?


How will you feel about living with your family, depending mainly on them for your day to day needs, when you are 25, 30, 40 years old?

Saturday, August 17, 2013

Accessibility vs. Accommodation

Accessibility is what we should expect to be ready for us without asking or planning ahead. It can be provided by following an easy to implement set of standards and practices that make "adaptation" unnecessary. We can benefit from accessibility without announcing or explaining our disabilities.

Accommodation is for adaptations that can't be anticipated or standardized. They are different for each individual. Although we should expect there to be a general willingness to accommodate us wherever we go, we can't expect actual, specific accommodations unless and until we ask for them. We do have to announce, and may have to explain our disabilities a bit in order to get accommodations.

Accessibility is the baseline of equal service, and accommodation is the second step to take when accessibility alone isn't enough.

Wedding Toast

I attended a wedding yesterday of a fantastic young man and woman … the bride being my brother's wife's daughter. The ceremony and reception were both held at a fairly high-end Vermont resort, and apart from the fact that the festivities themselves were beautiful, the accessibility and accommodations were really very good.

In fact, there's not a whole lot to report, except for some small details so I'll just bullet point them:

• When I checked in to get my hotel room on Thursday, the desk clerk showed me on a facility map where my room would be and how I could drive my car around to reach it. He said he'd have someone meet me over there to get my luggage out of my car. Before I could even get halfway there, the guy flagged me down and said they had reassigned my room to a location they figured would be easier for me during my stay … closer to the action so to speak. Plus, the room as an upgrade, for which they did not charge me. They did this without asking me. People with disabilities usually say that people should ask us before diving in to help, but in this case, I appreciated it.

• There were a lot of small changes in level throughout the resort, but they all were either without steps at all, or steps with accompanying ramps.

• The only bona fide barrier I saw was at the place where guests exited the reception hall to walk across to where the outdoor ceremony was held. There were three steps. I don't especially need a ramp for just a couple of steps, but I did notice it. The steps were pretty shallow though, and I'll bet that they have a temporary ramp available if alerted in advance.

• The bride's grandmother was there using a wheelchair most of the time. She and hurt her knee recently. From where I was sitting for the ceremony, I couldn't see how she handled the steps, and I think she may even have walked "down the aisle" on someone's arm. I might have been offended on her behalf if she were a full-time wheelchair user, but somehow the fact that her impairment was temporary made me think differently about it. For a temporarily disabled person, I guess I'm more understanding of the desire to shed the trappings of impairment and make a "normal" appearance in situations where everyone is watching.

• I didn't notice any ableist social blunders at all, from either the guests or the staff.

I really think that when it comes to big, complex social events like weddings, a relative lack of small annoyances has just as much positive effect as the absence of major barriers and offenses.

Wednesday, August 14, 2013

A Big Victory for Disability Rights

Disabled Veteran Wins Landmark Discrimination Suit Against FBI
Erik Sherman, AOL.Jobs - August 13, 2013

Outstanding news! This has all the elements to be an excellent case study for ADA and disability rights training. It seems like an especially sharp and clear example of a person with a disability being held to an arbitrary and unnecessary physical requirement, not to mention intimidation and gratuitous personal prejudice. It's the kind of situation where a lot of people would start out assuming the FBI was right, but as soon as the specifics are revealed, it becomes clear that they weren't just wrong, they were villains.

Pass The UN Treaty

Obama on Disability Treaty: 'Get It Done' - Disability Scoop
Hellomynameismaddy - August 13, 2013

I've been thinking about writing a pitch for passing the UN Convention on the Rights of Persons with Disabilities, but never seem to find the time and tolerance to deal with the forces of stupid that defeated its ratification by Congress the first time. This linked Tumblr post is a terrific summary that will serve the purpose.

Of course, I just have to add one more point ...

As noted in the post, one of the biggest reasons ratification failed is because homeschoolers … especially Christian conservative homeschoolers … were told that wording in the treaty about "best interests of children" would be used to overrule parents' decisions about raising their children with disabilities. I don't think that it's enough just to point and laugh at this idea. If you have a child with a disability, you don't have to be a fundamentalist Christian or an ideological conservative to develop an ambivalent attitude about government programs and public schools. Let's just say that Special Education as it is practiced is complicated, delicate, often infuriating to deal with, and produces often disappointing results. Which is not to say that it is wrong or evil or corrupt, but that it is difficult, sometimes impersonal and unresponsive, and weighed down by administrative burdens and old paradigms. Lots of parents, frankly, don't trust their schools and the governments that fund them, so it probably doesn't take much in the way of conspiracy theorizing to get their hackles up. Plus, parents of kids with disabilities tend to feel scrutinized and judged even more than most parents, so I think that they are susceptible to political campaigns aimed at fanning their distrust of any sort of authority.

Politicians know this, but they can't say it or even hint at it because they simply can't be heard criticizing or questioning the infallible wisdom of parents. 

It's not the concern that's laughable, but rather the fact that the possibility of this treaty having any of the rumored effects is so remote as to be nearly zero. Meanwhile, around the world, real-life policies and cultural traditions impose truly medieval hells on millions of children with disabilities, sometimes with full support of parents who literally may not know any better, or who have less than zero influence over anything … a level of powerlessness that the most beleaguered advocate in the US can't begin to fathom.

Anything that alleviates this by pointing in a better direction is worth doing.

Tuesday, August 13, 2013

ConfessYour ...

I'm doing some grant writing work today and tomorrow, so not much blogging from me. In the meantime, here's something to think about.

Over the weekend people were riffing for awhile on the hashtag #ConfessYourUnpopularOpinion. Most of what I saw was TV and movie critics talking about highly acclaimed titles and actors they actually don't like, but it got me thinking of how this could prompt a rich conversation on disability life, culture, and issues.

What beliefs on the subject do you have that you think others with disabilities would disagree with?

I'll bet that a lot of us would be surprised to find that at least some of our opinions aren't as "unpopular" as we think they are.

Monday, August 12, 2013

Keyword Search

I really think that my much discussed (by me), and perpetually in development website is going to focus a lot on disability in popular culture … TV, movies, books and comics, music, radio and podcasts, etc. On a moment's notice, I can generally brainstorm maybe 30 - 40 shows, films, and characters with a disability disability connection, but I figured it might be interesting to do some keyword searches on the Internet Movie Database, to see how many references turned up for some of the main disability-related terms:

disability - 670
handicap - 194
deaf - 213
blind - 248

I've got some catching up to do.

The President's DAV Speech: Pretty Good

I thought this was a very good speech. He didn't break any new ground, and there weren't any flashes of great insight, but the speech was very well balanced. I'd say roughly 60% of it was about specific policies 30% was inspirational, bordering on sentimental, and only about 10% of the speech was what could fairly be called political … in the sense of serving the President's agenda. I don't know what people there thought, but I think that's a very fair balance.

The policy portion broke down into 5 main priority areas:
  1. Adequate budgets / resources … a somewhat political pitch to end the sequester and get Congress to make a real budget deal.
  2. Ensure veterans health care … including specific reference to Agent Orange, Gulf War Syndrome, PTSD, prosthetics, mental health and the suicide epidemic, help to caregivers and families, and new efforts to provide more targets healthcare to female veterans. The Affordable Care Act was mentioned only as a reassurance that it wouldn't change anything for veterans who already have insurance, but might help those who don't acquire it.
  3. Reduce the claims backlog … reductions have not moved as fast as he wanted, but the backlog is shrinking. Also spoke of improving enrollment systems so that now and in the future, claims will be processed correctly, the first time.
  4. Rights and dignity of disabled veterans … ending homelessness of veterans, and mention of the need to pass the UN Disability Treaty, another somewhat political pitch, but not heavy handed.
  5. Education and jobs … efforts to curb shady education pitches, and increase Federal hiring of disabled veterans, including a push for a Veterans Job Corps that would organize public service around the country.
Some other things I noticed in the speech:
  • I wonder why Sgt. Perez didn't choose to have his leg amputated, rather than endure over 30 surgeries? I believe that in many similar cases, the recovery is much faster and more complete.
  • Come to think of it, none of the individual stories in the speech included making effective use of wheelchairs or other assistive devices, except temporarily on the way to "recovery".
  • American Veterans Disabled For Life Memorial??? Is that really its name? Why "for life?"
  • "Rather than be defined by what you lost … by what you can't do … you inspired Americans by what you can do."
  • The President made several references to veterans helping each other … by telling stories of three DAV employees, and by other examples of peer support, including disabled veterans reaching out to people injured in the Boston bombings … "Dedicated not just to your own recovery, but to taking care of each other."
  • Regarding the suicide epidemic, the President said he wanted to make sure that, "Those who are hurting know that asking for help is not a sign of weakness; it's part of staying strong.
  • Towards the end, the President did mention people getting on by using prosthetics, wheelchairs, walkers, homes adapted for accessibility, and one-on-one personal care. And at that point I realized that he didn't make a single reference or even hint at older-style permanent VA hospitals or institutions. It was all about people going home again, still recovering, but in their own homes and communities, with their families.
Good job, I thought, with an audience that's not a guaranteed slam dunk for any President. I'd like to see President Obama address a broader disability audience. Also, as I wrote a couple of weeks ago, I wish they could figure out a way for him to attend a breakout session or two at these types of conventions … so he could hear some of what rank and file members are learning and worried about.

Sunday, August 11, 2013

President Obama at the DAV

I haven't watched the video yet, but I will do shortly, and plan to write my thoughts about the speech tomorrow. I'm putting the video up now in case anyone visiting here would like to see it.

Here is the New York Times article covering the event:

Jackie Calmes, New York Times - August 10, 2013

For helpful background on the veterans disability claim backlog, I recommend Kayla Williams' 3-part series in Time Magazine:

Friday, August 9, 2013

More About Jenny ...

Jenny and Eve and the Statistics of Freedom
Dave Hingsburger, Rolling Around In My Head - August 7, 2013

I "shared" a link to this blog post about Jenny on my Facebook page, because of the photo that accompanied it, and the quote added to the photo. But, until a friend "Liked" it on my page, I hadn't actually read the linked blog post. It's really, really good.

The only quibble I have is where Hignsburger says that before the court ruling, peoples' doubts about Jenny were due to the fact that she has Down Syndrome. That's true, but in a weird way. I think we all knew that she had some kind of cognitive impairment, but the specifics of Jenny's disability were mostly either left out of news stories about her, or described in very vague terms. That vagueness is how people with cognitive impairments are always covered by news media … always. And lack of specificity tends to feed peoples' worst imaginings.

It is not impolite to talk about the specifics of anyone's disability, especially when those disabilities are the elephant in the room in debates over basic human rights.

Beginner, Intermediate, Advanced

Reading over my post yesterday about use of the word "handicapped", I'm starting to think that disability awareness isn't a binary, aware / not aware thing. There are levels of disability awareness, each of which represents a step in a positive direction. The problem is that if you're at the "Advanced" level, then people at "Intermediate" and "Beginner" levels seem like they're ableist, when really they're just not as far along in their understanding.

I also think that the successive levels of disability awareness aren't just a matter of each step being more of what came before. I think that the focus and even the philosophies shift, and sometimes reverse with each step from Beginner to Intermediate, and from Intermediate to Advanced disability awareness.

What the hell am I talking about? We need examples to test out this argument and see if it holds water. Stay tuned.

Thursday, August 8, 2013

"Handicapped" Is So Over!

A couple days ago I read an article in my local paper about our regional hospital moving one of its primary care clinics to a new location. The hospital spokeswoman was quoted in the article praising the new building for being, "handicapped accessible."*

First of all, that's like praising a newly built house for having doors and windows, or a new car for having a steering wheel. Or rather, it should be that obvious.

Second, it's not the worst offense in the world to use the word "handicapped," but from a professional doing a press interview it's embarrassing.

The semantic difference between "handicapped" and "disabled" isn't all that significant, and I don't really expect most people to have a firm grip on why "disabled" is the more accurate term. But, I think that the transition grace period for converting from "handicapped" to "disabled" has run out. We just don't say "handicapped" anymore. It doesn't matter why … it's just not done, and it makes the person saying "handicapped" sound out of step, like they're wearing bell bottoms.


* Note: Calling the building just plain "accessible" is fine, no qualifier needed.

Wednesday, August 7, 2013

Why doesn't NPR have a disability show?

photo of a radio microphone
I just realized something that surprised me. National Public Radio doesn't have a disability show.

The BBC has a regular disability show, and so does the Australian Broadcasting Corporation (ABC). They're close cousins to NPR in terms of content and mission, so why doesn't NPR have a disability show?

NPR does have Code Switch, which is not exactly a program but more of a team that produces radio stories, blog articles, and discussions on issues of race, ethnicity, and culture. Code Switch started about four months ago, and so far, their remit has not included disability. I really like their approach to what they do cover, and I really like the idea of a team producing stories that can run at any time, not just in a scheduled, separate show. This would have been especially helpful a few months ago when NPR explored the rise in the number of Americans on Social Security Disability Insurance. The weeklong series of stories was more thoughtful and substantive than I what just about any other news outlet would produce, but the lack of expertise on living with disabilities showed. Having a regular team to cover disability issues would have made the series even better.

Should the Code Switch team add disability coverage to it's slate? That would be the least disruptive to NPR's current structure, since Code Switch is already organized and running. Also, I'd much rather see disability categorized with race, ethnicity, and social identity issues than, say, health, the other main category disability tends to be dumped. However, I think I'd rather see them set up either a regular disability show, or a disability team along the lines of Code Switch, but separate from it, and as a distinct topic of its own. Maybe they could occasionally do crossovers and collaborations with Code Switch, as well as with their teams on economics and, okay, health care.

Why does this matter? Because while NPR can be annoying, pretentious, and easily mocked, it really is the go-to place for creative, in-depth journalism on any and all aspects of American life. I have more faith in NPR's ability to dig into disability issues than I do for just about any other news organization. They might even do better than some of the better disability studies programs and disability rights organizations, which do great work but aren't always … well … "accessible" to mainstream audiences.

Maybe it's time to petition NPR to do this.

Monday, August 5, 2013

Followup About Jenny

Disability No Excuse to Deprive One of Civil Liberties
Susan Mizner, Disability Counsel, ACLU, Huffington Post - August 5, 2013

This is a terrific piece about the guardianship ruling I posted about yesterday. It's an essential followup because Mizner explains effective alternatives to guardianship that address some peoples' need for support in a more limited, targeted way.

Speaking And Listening

Obama to address disabled veterans
David Jackson, USA Today - August 5, 2013

First of all, terrible writing:
"… an extra-special group of veterans: The disabled."

Second, I'm glad President Obama is speaking to the Disabled American Veterans convention, but it would be even better if he could attend one or two of the, "several seminars ... held to inform members on key legislative and policy issues affecting veterans." This is one group where the President should do more listening and learning than speaking.

Sunday, August 4, 2013

A Legal Victory For Choice

Disabled woman who won court battle with mother moves in with friends
Noreen O'Donnell, Reuters - August 3, 2013

This is an interesting victory, and doubly valuable because the ruling was so specific. The judge properly separated two issues. Does Jenny currently need a guardian? Yes. She has real cognitive impairments and at this time she needs some everyday supervision to live safely. Fine. Can she choose who her guardian is? Yes! Jenny can choose guardians who she feels comfortable with, and who will buy into and help facilitate the kind of life she wants, not what they think she should have. Furthermore, Jenny's new guardians have a mission, to help her learn to manage her own life, perhaps to the point where she will no longer need a guardian. The judge here underscored that:

a) Cognitive impairment isn't an all-or-nothing proposition.

b) It isn't a completely static condition.

c) Needing help with everyday "executive functions" doesn't mean you can't make sound, valid choices.

I don't know if this case broke any legal ground, but it beautifully, simply illustrated the more progressive approach to cognitive impairment that is evolving, and gradually (not fast enough) replacing older, more paternalistic models.

And of course, it's just awesome for Jenny.

Saturday, August 3, 2013

Bring Back Wheelchair Kid!

"Orange Is The New Black" generally succeeds at whatever it tries to do, so I was a little let down by the Episode 10 scenes with the "scared straight" wheelchair user kid. There's a followup scene with her where she's more of device to advance regular characters' plots. It's a better scene than this one, but this one has more interesting disability stuff.

The idea of a gang-banging wheelchair user works for this show, but the way the character is played is kind of lackluster. I think she's supposed to come off as bad-ass, but though her words are tough, her affect is sort of limp. Also, for a show with such outstanding writing, what she says about her disability is pretty cliché … "I can do anything anyone else can!" Not the most interesting thing to hear from a disabled teenager. I do like how the mere presence of a kid in a wheelchair throws off the carefully built swagger and menace of the inmates.

I don't know … maybe there just wasn't enough time to do more with a one-off visiting character. So, I'm hoping they'll bring Miss "roller" back next season as an inmate. I'd like to learn more about her through flashbacks, as the show has done with other characters. It would also be interesting to see whether she ends up specially victimized, specially protected, or whether she would wind up asserting some authority of her own … maybe carve out her own niche in the Lichfield social system.

Friday, August 2, 2013

Why Is Accessibility Such A Big Deal?

Disabled make a point in social media and says that hotels do not respect accessibility rules
Ricardo Shimosakai, Tourismo Adaptado - July 31, 2013

I like this strategy … using social media to get the attention of businesses with big accessibility failures. It's a good addition to reporting accessibility details on dedicated accessibility rating sites like AXS Map and AbleRoad. Maybe the thing to do is rate all the businesses, good and bad, and reserve the Facebook and Twitter dings for the most egregious cases.

Man in a wheelchair facing a short set of stairs
The article also clarifies for me one of the reasons why accessibility barriers can be so annoying, sometimes more annoying than the actual consequences would seem to justify. The reason is that so many accessibility barriers are so damned easy to fix or prevent. It's hard enough dealing with legitimately difficult barriers barriers that require expensive construction or equipment to fix, without also facing barriers that are there solely because of a person's thoughtlessness … like a wheelchair accessible restroom crammed with wine boxes. The same goes for handicapped parking spaces used as dumps for plowed snow, elevators used to store delivery carts, and store aisles narrowed by product displays. Even if the consequences are small, these problems are doubly galling because we know a person made a decision that resulted in another barrier … a decision that could easily have gone a different way, at no extra cost and little extra inconvenience.

And by the way, that's why accessibility overall is such an emotional issue, as well as practical. When you have a disability, there are lots of difficulties you can't change, you just have to live with. But accessibility is something we know how to do. So, when it doesn't happen, we know our misfortune isn't random, it's the result of either ignorance or a conscious decision that that the money, effort, or creative thought were determined by someone too much to expend to make life a little easier, or remotely feasible, for us. Even though we're not supposed to, it's hard not to take that just a bit personally.

In Search Of Disability Culture

I don't think there's really a "Disability Culture" yet. There are several Disability Subcultures. Some of them are unique and more or less undiluted, coming directly out of the disability experience itself. Most are manifestations of otter "Cultures" mixing with and processing the disability experience. I feel like I want to expand on this, but right now I can't find the right words. To be continued ...

Thursday, August 1, 2013


Is it a species of inspiration porn or objectification that I'm smiling, feeling kinship, and having, "You go girl!" thoughts about the 9 year old girl with a right hand amputation who is visiting this Starbucks with her parents, dancing around as she walks up to the counter, seemingly having a great, happy summer day?