Opening Ceremony (live)
11:00 AM Eastern
NBC Sports Network
Thursday, March 6, 2014
"Not The Fun Kind"
I’m going to break my own rule and add something to this photo. It starts with a comment on the photo from the blogger / selfie-taker herself:
"I never ever ever ever ever ever want to walk again. That was hell. And not the fun kind.”
I am aware that for some people, the notion of disabled people NOT wishing to be less disabled … of wheelchair users NOT working their asses off to walk again someday … is quite controversial. I dare say for quite a few people it sounds utterly irrational, either “crazy” or some sort of contrarian stance. Well, for some of us it is somewhat philosophical. But for others, it is completely practical; doing things the “normal” way hurts, and is just less practical, than embracing tools and adaptations. I walk, it works for me and my everyday needs, and I am glad for all the surgery and physical therapy in my early years that made that possible. But, I used a mobility scooter when I was in college, and when I have to travel through an airport, gimme that wheelchair man.
Finding Our History
Have you ever run across a website that perfectly matches with one of your passions, and wondered, “How is it that I’m only finding this now?”
That’s exactly how I felt when I found my way to the “It’s Our Story” YouTube Channel … a collection of interviews with the people who have witnessed and participated in the key events of the disability rights movement. I’ll be back to visit often, I think, because there are far too many interesting-looking videos to watch in one sitting. I won’t post all of them here, because if you are interested you should bookmark the site and browse it yourself.
I will, however, post this video interview with Jennifer Keelan, who participated in what has become known as the “Capitol Crawl”, a key demonstration aimed at passing the Americans with Disabilities Act.
This video, and the incident it depicts, fascinates me. It is an amazing example of how difficult it is to predict how photos and footage of disabled people are going to be viewed. Will people feel pity, or will they be empowered? Are the two mutually exclusive? Will a deliberate demonstration … some might say a stunt … focus attention on a cause, or distract from it. As it happens, the whole thing worked on just about every level, but I bet with a few slight differences it could have easily failed.
I think this was one of those rare incidents when peoples’ stereotypes and sympathies about disabled people were harnessed to accomplish something constructive … to produce change, not tears. And if there were tears, they were tears of strength and pride, not pity. Very few organizations seem able to pull this off … and ADAPT are masters at it. And, let’s not forget that Ms. Keelan was right.
Here is a clip of the "Capitol Crawl" by the PBS show "Independent Lens". The "little girl" climbing the steps is Jennifer Keelan.
Here is a clip of the "Capitol Crawl" by the PBS show "Independent Lens". The "little girl" climbing the steps is Jennifer Keelan.
Blogging Announcement
I am proud to announce the publication of my first post as a contributing blogger at the special needs website Shared Abilities. The post is titled “We Are The Experts”, and you can read it now by clicking the title link.
The plan for my Shared Abilities blog is to focus on disability issues advocacy. My goal will be to encourage Shared Abilities readers to explore ways that policies, practices, and laws can be changed to make real life improvements for people with disabilities and their families. The first post touches on recent developments with the Minimum Wage. My second post will look at an intriguing and possibly game-changing bill in Congress, the ABLE Act.
Blogging at Shared Abilities won’t change my daily blogging at Disability Thinking. This is my baby, so to speak, and will remain the core of my blogging activities for the foreseeable future. It’s good to branch out, though. I do believe I have some unique things to say, and the whole point is for more people to read them. I am grateful to Shared Abilities for offering me this opportunity.
By the way, I am actually one of six new bloggers announced today at Shared Abilities. I hope you will read the other bloggers as well. They each offer their own unique perspectives on disability.
Here are the links one more time:
Wednesday, March 5, 2014
Vigil Followup
Here are two items to follow up on Saturday’s 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"
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
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!”
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.
I did a blog post about “My Left Foot” last April.
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
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.
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