Wednesday, March 5, 2014

Vigil Followup

Here are two items to follow up on Saturdays Day Of Mourning vigils for people with disabilities murdered by parents or caregivers:

Remembering People with Disabilities Murdered by Caregivers - The List

Heather Yaden, Applied Sentience - March 4, 2014

The first is a complete list of the individuals remembered at the vigils. As the web page notes, it can be disturbing reading, so be forewarned.

The second item is a wonderfully written article that explains some of the key concepts behind the vigils. They aren’t just about the murders, they are about how the murders are talked about and understood by the public.

The only thing I would suggest changing, maybe for next year’s vigils, is to add the legal outcome of each specific case. One of the main points of this is that people not only speak sympathetically about the killers, this tacit approval of murder is often reflected in light sentences and even acquittals. I would like to know exactly how common this is. I’m not a fan of passing laws that tie the hands of judges and prosecutors, but it would be worth considering some kind of legal remedy to this problem. Maybe limiting the admissibility of evidence about victims’ disabilities might help, or requiring that background evidence or testimony be given regarding alternative life and care possibilities for people with particular disabilities.

Learning about this observance has been a revelation to me. I had heard about the issue before, but never saw it addressed in such an organized, compelling way. My admiration for the Autistic Self Advocacy Network just keeps growing.

Tuesday, March 4, 2014

Video Of The Day


My Gimpy Life
Episode 8 - “The Morning After"

I'm still 'shipping Teal's roommate and Teal 2.

The Popularity Of "Inspirational"

ideas topic icon
I realized something while watching the Oscars Sunday night … something that changes how I think about “inspirational”.

I think that “inspiration” and “inspirational” are becoming all-purpose, generic, go-to words for any kind of positivity. The reason we in the disability community hear these words so often is because everyone is using them, everywhere, in every kind of topic, whether they truly fit the situation or not. It is becoming the new “awesome”, and like “awesome”, “inspirational” is over-used. I haven’t made a detailed linguistic study or anything, but I’m getting the impression that variations on “inspirational” these days serve two purposes:

1. To endow people or things with a positive sheen that isn’t bubbly or trivial, but rather deeper, more spiritual, and significant. There is a reverence implied that is different from other kinds of positive regard.

2. To make a sort of backhanded swipe at the emotional and spiritual opposites of “inspirational” … people and things that are ironic, sarcastic, cynical, or depressing. In other words, bummers.

Maybe when people say that disabled people are "inspirational", they just mean we aren't bummers.

I think this increased use of “inspirational” lately is part of a pendulum swing towards positivity, enthusiasm, and reverence, after several decades when popular culture has been dominated by irony, sarcasm, cool detachment, and cynicism. It is the difference between the furrowed brow, and wide-eyed wonder … between complexity and mixed motives, and simple sincerity. If you were an adult right after 9/11, you might remember people speculating then that popular culture would become more emotional and sincere, less detached and ironic. Maybe it's happening, just later than people originally thought.

Or, it could be simpler than all that. Maybe "inspirational" is what spiritual-but-not-religious people say about things that move them, instead of more religious words like “blessed”.

So, why does it still bother us?

I think the root of our distaste for “inspirational” is that 90% of the time it sounds like a default … something nice people say about us when they don’t actually know enough about us to be specific. That’s why I think it usually comes from strangers, and why it hurts even more when, occasionally, even close friends or family use it.

On the other hand, if people call us “inspirational” out of habit more than meaning, then presumably we might persuade them to use words that don’t sound to us like fingernails on a blackboard.

How about a good old-fashioned “Mad Lib”:

"The story about that woman in a wheelchair is so _____________(adjective)_!”

"Can I just say? You are such an _____________(adjective)_ to me.

Of course, another option is to not comment  on people ... either positively or negatively ... until you know something about them beyond surface appearances and familiar assumptions.

Monday, March 3, 2014

Picture Of The Day

Simple color illustration of a woman with long black hair, sitting in a wheelchair, wearing a crown, holding a small dragon.
From the Gimp Goddess Tumblr blog, via Just Rolling On.

Oscar Night Followup

I was re-watching Lupita Nyong’o, Academy Award acceptance speech, again appreciating the emotional core of her remarks ...
"It doesn’t escape me for one moment that so much joy in my life is thanks to so much pain in someone else’s.”
Now, Nyong’o was referring to the fact that her role in “12 Years A Slave” (which I haven’t seen yet), was based on a real-life woman who was, in fact, a slave. If I understand her meaning, she was acknowledging the fact that her good fortune is based on the reality of a very difficult life.

While I in no way would compare the life of a slave to living with a disability … a mistake that I’m afraid a lot of people might make if the thought were suggested … it did cause me to wonder what Daniel Day-Lewis said in his acceptance speech when he won the Best Actor Oscar for his portrayal of the real-life man Christy Brown in “My Left Foot". So, I looked it up. Here is the video, and a transcript of his speech:
http://disabilitythinking.blogspot.com/2014/03/another-look-my-left-foot.html

1989 Academy Awards

"You've just provided me with the makings of one hell of a weekend in Dublin."
"I shared Christy's life for a while with a remarkable young actor called Hugh O'Conor. But for everyone involved in the film, all our desire to make the film, all the strength that we needed, all the pleasure that we took in making the film came from Christy Brown. When he was alive he needed very little encouragement to make his voice heard. Now he needs a little more. And I'm truly grateful to you that in honoring me with this award you're encouraging Christy to carry on making his mark. Thank you very much indeed.”
It is a very gracious and succinct speech. He didn’t say anything offensive or condescending. He spoke about giving new voice to a man who when he was alive, struggled in particular to be heard and understood. That suggests D-Day "got it", that he drew good conclusions from his experience “with” Christy Brown. Day-Lewis’ speech doesn’t have quite the empowering ring that Nyong’o’s had, but I think that in a speech about a disabled person, by a non-disabled person, it’s probably best to keep it simple and not try to draw too many dubious connections.

I wonder what Tom Cruise would have said if he had won Best Actor instead, for portraying another real-life disabled person, Ron Kovic, in “Born On The Fourth Of July”?

Also, unrelated bonus for seeing other familiar faces how they looked in early 1990: Jodie Foster, Robin Williams (with a regrettable ‘stache), and Jessica Lange.

Disability Dialogs: Accessibility

Variations on the following exchange happen all the time ...

Disabled person: “Society is ableist! Disabled people are oppressed by ableism!”

Non-disabled person: “You’re exaggerating. Things are so much better than they used to be!"

Disabled person: “#$%&! All the restaurants in my neighborhood have steps, and the ones with ramps have inaccessible bathrooms!”

Non-disabled person: “Really? That can’t be right, it's against the law!”

Disabled person: “Are you kidding me?”

Non-disabled person: “What?!”

Disabled person: “Never mind …”

Non-disabled person: "You should really speak to the managers about this …”

Disabled person: “You think I haven’t tried?!”

Non-disabled person: “Well, if you talk to them like that, you won’t get anywhere …”

Disabled person: "#$%&!”

Non-disabled person: “Well, if educating the owners doesn’t work, just file an ADA complaint. ”

Disabled person: “You think that will do any good? The only way it would help would be if I could afford the time and money to sue, but I can’t. Pretty much nobody can.”

Non-disabled person: “ … “

Non-disabled person: “You still shouldn’t be so angry. Nobody will listen to a chronically complaining hothead.”

Disabled person: “But, society is ableist! Ableism holds me back all the time!”

… and so on, and so on.

Quite often, the second person in the conversation is another disabled person who has also experienced discrimination and architectural barriers, but has a fundamentally different view and temperament about them. I’m pretty sure this is true because I have been that other disabled person who objected to anger and tried to explain to another disabled person how the ADA works.

Sunday, March 2, 2014

Another Look: "My Left Foot"

The 2013 Academy Awards are tonight, which reminds me of what might be the first disability-themed film I ever noticed … “My Left Foot”, starring Daniel Day-Lewis as Christy Brown, an early 20th Century Irish painter and poet who had Cerebral Palsy.

"My Left Foot" was nominated for Best Picture at the 1989 Academy Awards. The other Best Picture nominees that year were: "Driving Miss Daisy" (Winner), "Born On The Fourth Of July", "Dead Poet’s Society", "Field Of Dreams". Although opinions vary on how well these films have stood the test of time since then, in 1989 that was a pretty impressive list of nominees. All of them were both popular and critically acclaimed.


Art deco style movie poster for My Left Foot
Looking back again at the film, three scenes stand out, each involving Christy sticking up for his family:

1. When Christy’s father lashes out at his eldest daughter for getting pregnant, Christy explodes in rage against him, in defense of his sister. It’s the first time we really see Christy lose control, but it helps round out his personality.

2. When Christy is paid for one of his poems, he and his siblings hide the money in a tin container their mother uses to save cash, and when she find it, they all share in the joy of the surprise. The scene helps underscore Christy’s devotion to his mother, and there is meaning in the fact that he is giving materially to her.

3. When a jerk in the pub insults the memory of Christy’s father, while his family are having his wake, it’s Christy who at first seems to act as mediator, but then literally "kicks off" a classic bar fight in which his whole family takes part. 

The most memorable aspect of the film for me is Christy’s relationships with two women. He is an adult at this point, and falls in love, (or lust), with each of them, but the two women respond to him quite differently.

His Physical Therapist, Dr. Eileen Cole, treats Christy with utmost respect and admiration, at least verbally and intellectually. He is her star patient, and she is an expert at the top of her field. Yet, she is oblivious to the possibility that Christy might have sexual feelings for her. She seems to think nothing of flopping down on Christy’s bed and being extremely physically casual with him. Eileen likes and admires Christy, but we can see that it has never occurred to her that Christy might have normal sexual feelings. When he finally declares his feelings for her, unfortunately in a public place, Eileen is stunned and embarrassed. Her response is basically to try and shut him up and hide him away, like a mortified mother trying to drag her tantruming toddler out of a nice restaurant.

This is also the moment when Christy delivers by far the most memorable line of the film:
"I've had nothing but Platonic love all my life. You know what I say? Fuck Plato!"
Ironically, Mary, a temporary nurse hired to attend to Christy during a special event, realizes right away that he’s flirting with her. While she maintains a professional distance and demeanor while on duty, Mary speaks to Christy in a friendly way, and, very subtly, makes it clear that … to put it a bluntly … she’s into him. She doesn’t fawn and butter Christy up as Eileen sometimes did. She is no kind of “expert” on Cerebral Palsy. But somehow she understands from the get-go that Christy is a man like any other, and she finds him intriguing in a way that almost nobody else in the film does.

“My Left Foot” has aged well. It still represents a progressive and respectful look at its subject. Notably, the same can’t be said of the Oscar winner that year, “Driving Miss Daisy”, which, though well-inteded, looks today like an embarrassingly condescending take on racial “understanding”.

"My Left Foot" may be the best "disability film" ever made. At the very least, it deserves a nomination.

Weekly Wrap-Up

Disability Thinking Weekly Wrap-Up
Sunday, February 23, 2014
Monday, February 24, 2014
Tuesday, February 25, 2014
Wednesday, February 26, 2014
Thursday, February 27, 2014
Friday, February 28, 2014
Saturday, March 1, 2014

Saturday, March 1, 2014

Rare Disease Day (Better Late Than Never)

Friday was Rare Disease Day. I thought for a moment or two about posting something on my “disease”, then forgot. So, here, belatedly, is my personal perspective as a person who has a “rare disease”.

One reason I forgot about Rare Disease Day is that I have never thought of my “condition” as a “disease.” Even before I consciously knew anything about the “Social Model” of disability, I tended to view my disability as something more like race or ethnicity than like cancer or malaria. I type that, and ask myself, “Really? Have you always felt that way, even as a child?” And I think about it, and I say yes. To me, even as a child, my disabilities felt like something that set me apart more socially than physically. Mind you, I rarely felt severely set apart. I have been very fortunate to have lived in a series of fairly welcoming communities. But, the social divide has, at least until recently, felt more significant than my physical differences.

That said, even my physical differences never felt to me like “disease”. They never felt like something from the outside that had attacked me, or something I could conceivably get rid of. That’s probably what I and lots of other disabled people mean when we say that our disabilities are “part of us.” It’s probably the most persuasive argument for why the language pendulum is swinging away from saying “people with disabilities”, back towards saying “disabled people”, at least for some of us.

At any rate, I have never, to this day, been able sustain any real interest in Arthrogyposis as a “disease”, a “condition” or whatever it should be called. I am very interested in how my spine curvature affects my lung capacity. I have strong and mixed feelings about how my body looks because of Arthrogryposis. I wish every day, frankly, that I could breathe more efficiently so I wasn’t so easily tired. It would be nice to have a bit more upper body strength. I don’t actually wish I were taller than 4’ 1” … my height is probably the part of my disabilities that bothers me the least … but I have to admit that I occasionally speculate on what it would be like to be, say, 5’ 5”. I am grateful that I am able to know enough about my disabilities to integrate them into a workable understanding, and that for a variety of reasons, I have never felt like my disabilities made me a lesser person.

The fact that all of these traits in me derive from a genetic condition called Arthrogryposis doesn’t interest me in the least. I know that a lot of people attach great importance to their “diagnosis”, and maybe I would, too if I didn’t have one. But as it is, my particular diagnosis means almost nothing to me. It’s the practical consequences that matter to me, and it’s always been that way for me as long as I can remember.

Of course, I can see how Arthrogryposis could be intrinsically interesting. The fact that it doesn’t interest me doesn’t mean it isn’t interesting. So, here’s a Wikipedia link to Arthrogryposis, which I, myself will read and see if I learn anything new.

Join The Vigil

I am about to sign on to the virtual part of the vigils to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.

You can log in anytime between 3:00 and 9:00 PM Eastern Time today (March 1, 2014), by clicking the photo below.
photo of a single burning candle against a dark background
Addendum:

According to the Autistic Self Advocacy Network, live, in-person vigils are being held today in the following cities:

Sacramento, CA
San Francisco Bay Area, CA
Fort Myers, FL
Atlanta, GA
Chicago, IL
Boston, MA
Baltimore, MD
Towson, MD
Houghton, MI
Missoula, MT
Robbinsville, NC
Lincoln, NE
Woodbridge, NJ
Reno, NV
New City, NY
New York City, NY
Rochester, NY
Syracuse, NY
Eugene, OR
Portland, OR
Pittsburgh, PA
Seattle, WA
Washington, DC
Halifax, Nova Scotia

Another Addendum:

Yet Another Disabled Child Killed By Family
S. E. Smith, xojane.com - June 19, 2013

Here is an excellent, hard to read, but important article that provides very specific context to this vigil. Please read it, especially if you are not sure what this Vigil / Day Of Mourning is all about. Thanks to Tumblr bloggers Wheeliewifee and Sunshine, Been Keeping Me Up For Days who posted and reflagged this.

Photo Of The Day

Photo of a woman sitting in a manual wheelchair, wearing a turquoise sweater, white scarf. She has her eyes closed and is facing to the right

Why Disabled People Hate Bureaucracy

Illustration of quotation marks
Okay, I guess everyone hates bureaucracy, but disabled people hate it more, because we have to deal with it more often, and the stakes are usually higher, and consequences worse, when bureaucracy fails.

Case in point:
"I’ve not had a shower for nearly 18 months, and it’s been about 2 years since my last bath. I have a wet room but no suitable shower chair, which they won’t give me until I have a hoist, which they won’t give me until I’ve had the case conference, which I can’t have until I’ve seen the consultant, who I can’t see until I can get transport sorted (but is meant to be happening in February). Yeah, complicated.”
From a blog post by Dannilion found at livingwithdisability, via too brain fogged for this.

Friday, February 28, 2014

Day Of Mourning

Saturday, March 1st, the disability community will gather across the nation to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.
Autistic Self Advocacy Network - February 24, 2014

Some facts from the Autistic Self Advocacy Network:
"In the past five years, over forty people with disabilities have been murdered by their parents."
"In the year since our last vigil, our community has lost at least ten more victims."
"In January of 2014, two more disabled people were lost in murder-suicides at the hands of their parents: Damien Veraghen, age nine, and Vincent Phan, age twenty four."
The deaths are bad enough. The reason disability activists are angry about them and having vigils is how the deaths are often portrayed in the media and treated by the judicial system.

Too often, news stories portray the killings with more sadness than outrage. It's sad, you see, that the murdered person had such awful, trying disabilities that their caregiver just couldn't take it anymore. The there's my personal favorite situation ... where the killer is a very old man or woman and the disabled "child" they kill is a 50 year old adult who has been "cared for" by just their parents their entire lives. It's sad because the poor old man or woman just didn't know how their baby would be taken care of when they die. Far better to kill them now than to have them cared for by *gasp* strangers!

Then, juries and judges seem to go out of their way to lessen the consequences for the killers. The law can't condone murder, no sir! But, wink, wink, shake of the head, we understand. NO ONE can know how hard it is for caregivers, so who are we to judge? He was a saint to dedicate his life to this person to begin with. It's sad that in the end he cracked, but what's to be gained by punishing the poor old guy?

The thing is, a lot of these sentiments make sense, once you view the person murdered as something less than fully human ... a dead weight “vegetable", a bundle of unsolvable logistical problems, or a screaming, irrational hurricane that simply won't act normally, ever! Except that they are all fully human, with self awareness and points of view. Where is the outrage for their loss of life, the end of their existence and potential?

Still and all, I don't care, frankly, about seeing these killers literally punished for what they have done. I care about the message it sends when they are let off the hook in the public consciousness.

Organizations involved in the nationwide vigils include:

The Autistic Self Advocacy Network, ADAPT, Not Dead Yet, the National Council on Independent Living, and the Disability Rights Education & Defense Fund.

Check the article linked above for a list of places holding vigils on Saturday, March 1. You can also participate in a “virtual” vigil via a Facebook Page.