Well, that's over.
Image description: The black-and-white photograph is the upper back of a man with a tribal art tattoo across the shoulders and the following "tattooed" just below: "NaBloPoMo '07 Mission Accomplished" with a little skull image after the "'07". Sara made this and the one from the beginning of the month, which I will leave in the sidebar at right for a while because it's cool. Cooler than me, actually.
So. One mission accomplished and another about to begin. Tomorrow I will begin blogging at Alas, A Blog on a regular basis. I've guest blogged there before for a month-long stint, and now Barry (AKA Ampersand) has asked me to be one of his regular co-bloggers. I'm excited about this for a variety of reasons, and I'll say more about it tomorrow, but two things for now:
First, everything I post over there that is disability-related will also be posted here, and some of the sillier stuff here won't all appear over there. The Gimp Parade won't change except that a couple times a week I'll make a point of writing something that will hopefully be interesting for the larger audience over there to read and maybe even discuss. Content here might possibly improve. Plus, I will be able to keep the focus here on disability and use Alas for occasional writing on non-disability stuff that I am often itching to talk about but don't want to use The Gimp Parade for.
And second, I know that some of my strongly anti-porn radical feminist friends won't want to click over there to follow discussion and might be upset I'm contributing there. (No, Amp isn't in the porn business and you won't find porn at Alas, but about a year ago he did sell his domain name in order to pay some bills. The buyer does link to porn, and you can read more about all that here.) I'm not categorically against porn, and while I could say much more about that, I won't just now. But I hope those uncomfortable with participating at Alas will continue to do so here.
What I will say is that Amp has always been committed to inclusion of disability issues on his blog and in discussion of diversity generally. He and I don't agree on everything about disability. For example, there've been long threads on personhood and Terri Schiavo at Alas that made me want to scream and tear my hair out, partly for Amp's contributions and partly for the tone of many commenters. Step outside the disability blog niche and many (if not most) discussions of disability are much more contentious and not as crip-friendly or nuanced to our experiences. I don't expect this will have changed and while I will personally find it very challenging -- partly because I lose patience and interest when thread comments run into the hundreds -- I don't think it has to be a bad thing.
Amp and I have been discussing disability and other things in various online forums for about eight years now, beginning at the long-defunct Ms. Magazine Boards. That predates this blog by about four years. So, I have trust in Amp's commitment to disability issues and inclusion of the disability perspective in any and all debates at his place, though as I've noted the community of people who comment there are not all of like minds. I hope readers will join us over there to enrich the discussion of disability. It's bound to be interesting.
Friday, November 30, 2007
Well, that's over.
Thursday, November 29, 2007
Shiva at Biodiverse Resistance has written a great post in honor of last week's Transgender Day of Remembrance Remembrance: "Trans liberation and disability liberation: a necessary alliance"
Ms. Crip Chick riffs off of recent critiques of women's studies programs that offer only token examples of women of color by discussing token committee membership experiences or what she calls "crip on a stick"
Ms. Crip Chick also writes on the intersection of queerness and disability
Mik Danger at Coffee and Gender posts on the use of the ADA to provide physical and financial safety against trans hate and discrimination in "In and Out of My Body"
Grace at Heroine Content, a blog for feminist critique of film and television, looks at Million Dollar Baby
Cilla Sluga at Big Noise writes about the difference between offering help and teaching empowerment in "No Short Cuts"
Image description: A poster from Northland Poster Collective. On a beige background with a woodcut texture, bold black text reads "If you have come to help me you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together. -- Aboriginal Activist Sister"
Wednesday, November 28, 2007
I've been posting images of art about disability that I've found on Flickr lately. But there's a program in Uzbekistan that uses art to help integrate disabled children with their nondisabled peers. From a Unicef news story:
Renata Karimova among over hundred of children does not suffer the fate of many other peers. Having come to the "SANVIKT" art rehabilitation Center, the children get opportunities for developing their creative abilities and communicating with healthy peers. "It is impossible to solve a problem of disabled children integration into everyday life without joint education and communication"- says Gulsara Rajapova, the Center Director. "It is a valuable opportunity for healthy children to learn to be tolerant, surmount deep-rooted prejudices and to look widely on life", -she added.And despite some obvious language translation problems, here's another informative article on the program.
For many children staying with the Center is the opportunity for developing their creative abilities, increasing their capacities, acquiring necessary life skills and knowledge for the future realization of their potential.
The program's site, Sanvikt, is not in English. (Russian, maybe?) And the images of the art and people in the program are lovely, but not still images, so I do not know how to put an example here or even describe for the visually impaired, except to say there are dozens of images showing rooms filled from wall to ceiling with art, images of children working on art, and a big mural being painted by many. Anyone with suggestions of how to capture an image or two to put here, please enlighten me.
Tuesday, November 27, 2007
A follow-up to last week's post about "My fat (but actually very normal-sized) legs" to illustrate that I speak the truth: My legs are no longer skinny, but are also totally not fat, no matter how much the change in them surprises me or how much the media representation of "normal-sized" warps my brain even after years of being unhealthily underweight and wishing I was not.
Both of these photos were taken this past week, though frankly, the first one is just to show off my socks. Both are color pictures of me from mid-thigh down sitting in my white scooter. Vent tubing can be glimpsed here and there, as well as "The Tooth" (see endnote here) near my right knee in the second photo.
In the first I am wearing white print pajama pants pulled up to my knees to show long over-the-knee stripey cashmere socks in shades of green, brown, orange and light blue. Snazzy blue tennis shoes.
In the second photo I am wearing brown pants pulled up to my knees to reveal my sturdy looking pegs. Crew socks in a space-dyed purple-brown-dark green (psst! Elizabeth: Smartwool!), my hairy legs, and those same tennis shoes.
Here is a side-by-side comparison of my legs in '92 and today. Reminder: I am 5'11" and currently weigh about 125 pounds. That puts my BMI at 17.4, thoroughly in the "underweight" category even now.
On a different topic, an interesting Google search led here today:
"what would I look like with no skeleton?" (This blog is, inexplicably, the fifth best hit for that info.)
And, finally, the news that I no longer rank in even the top 100 options for the Google answer to the search: replacement parts for older japanese vacuums
I am sad.
This isn't the most amazing picture of Elizabeth and her squirrel friend. (Hee hee, I wanted to say that as an excuse to mention her hilarious and very cool dolphin post, her very real and poignant post where she shares the pain and also to direct people over there who haven't yet clued into the greatness that is Screw Bronze!) You'll have to go there for the rest of the photos.
Image description: Screw Bronze's Elizabeth McClung sits in her manual wheelchair in a park feeding a squirrel. Hand held down by the back rim of her right rear wheel, a brown squirrel stretches up to reach the food she holds. The squirrel's front paws are holding onto the wheel rim. I believe his name is Twitchy, which is coincidentally also the name of all the woodland squirrels I know.
Monday, November 26, 2007
Flickr photo by mike fischer of a fantastically beautiful mural in San Franscisco. (I think Brown- femipower had this image in an entry about a year ago.) Two Latino women clasp hands above their heads and dance. A young woman with flowing dark hair sits in a manual wheelchair grinning at her able-bodied dance partner, an older woman with her hair in a bun. The older woman wears a sunny yellow top and blue print skirt. The younger woman wears turquoise pants and a lavender sleeveless top with the words "Earn Your Attitude, ACT UP" on it. The front wheels of her chair are not touched the ground, which is a field of grass and flowers.
Flickr photo by dabdiputs of a mural in the cafeteria of the Department of Agriculture in Washington, D.C. Against an abstract multi-colored squiggle background the giant blue figure of the international wheelchair access symbol dude sits with a big grin and some sort of green helmet. I think the helmet is for Extreme Moshing, because he is surrounded by the multi-colored words "Rock 'n Roll Wheelchair."
Flickr photo by nicholsphotos of the Working Classroom Mural at about 3rd and Gold Streets in Albuquerque, New Mexico. It's part of the Albuquerque Murals Project. Detail of a larger image, apparently, this part is of a classroom of young students. A black woman in a bright turquoise dress stands before them holding up a copy of the Free Press newspaper while students of various races and ethnicities sit before her. The student on the far left, hand raised in the air, sits in a manual wheelchair.
A huge, very realistic image of a Latino or black man sitting in a power wheelchair. The dude is about ten stories tall and looks so real. Could an actual photograph be transferred onto a space that big? He's in a modern black power chair and wears a gray hooded sweatshirt under a khaki jacket. Baggy blue jeans and white sneakers. Flickr photo taken in Philly by robotkasten.
On a large wall with big white tiles of smooth brickwork, black silhouetted figures in profile travel toward each other. Coming from the left, a woman with her hair in a ponytail pushing a child in a stroller. Approaching from the left, an elderly man pushing a person in a manual wheelchair, with the leg rests of the chair sticking out in front. Flickr photo by LarimdaME. If the photo tags can be trusted, this mural can be found in the subway station at Prince Street, uptown in New York City.
Flickr photo by gregkendallball of a mural in an Edgefield hotel in Oregon. Three bald people in white sleeveless gowns sit in manual wheelchairs. They have small wings attached to their backs, so perhaps they're supposed to be angels? (I don't like that part.) On a cream colored wall with a bold blue river of water the people seem to be following. Yellow stars follow their path.
Liz Henry who blogs at Badgermama captions this Flickr photo from a Portland hotel: "i hate this hotel with its no elevators to the third floor and its 1-story high ramp in the back and how there are no lifts anywhere. and how smug everyone is. and how there is no bathroom in my room and no bathtub anywhere. But I especially hate its endless giant murals of smiling people in wheelchairs. What the fuck?" This mural of smiling people in wheelchairs is located in a stairwell, as you can see from the photo taken half a flight up, the closest someone portrayed in the mural might ever be able to get to the art. Ironic, no? I can't see the mural clearly enough to describe much detail, but there's a pool table and at least two people in wheelchairs, with a woman lounging sexily in the lap of one of the wheelchair users.
Sunday, November 25, 2007
Posted at Flickr in September, 2006, by mexicosolidarity, who leaves this caption: "An incredible banner that has been created in the Zocalo for many weeks. It depicts the struggle. The people carry signs calling for death to capitalism and for APPO. Governor Ulises can be seen in the wheelchair along with many other members of his repressive government." The mural is long and horizontal, in shades of red, white and black. Soldiers with guns face a crowd carrying weapons and banners that read, in Spanish, "Death to Capitalism" and"Fire [Governor] Ulises!"
R. Hennessy's Flickr photo, captioned: "Sure, it's a mural of a scenic day at All-American City Rutland, Vermont. Guys playing guitars, kids on roller skates, old people looking at things, and guys in wheelchairs. But take a closer look. Why does everyone have on the same pair of sunglasses? What is it about Rutland, Vermont that makes everyone want to be an aviator? Or does the artist simply not know how to paint eyes?" An idyllic city park scene, the person in the right foreground is an older white man sitting in a manual chair he pushes himself. Yes, he has the aviator sunglasses too.
Nuevo Anden's Flickr photo of a wall mural in Brookline, Massachusetts. While the dramatic Mexican mural conveys action and the Vermont mural is very realistically painted, this close-up of a white-bearded white man in a manual wheelchair is blurry and expressionistic. The man is looking toward us, leaning to the right over his right wheel. There's a small brown dog playing by his feet and the man has a stick in his hand. There are trees, leaves and grass all around.
Zesmerelda's Flickr photo of a Philadelphia wall grafitti of a bold, white spray-painted manual wheelchair and a box with the word "wheelchairs" and an arrow pointing to the drawing.
Edith OSB's Flickr photo of detail of a mural at the Sierra Vista Elementary School. I don't know what city. It's a colorful painting of an Indian woman or girl in a manual wheelchair wearing a pink and green sari and traditional Indian jewelry. The spokes of the wheelchair have "virtues" written along them, including: "Commitment, Detachment, Diligence, Excellence, Flexibility, Gentleness, Humility, Idealism, Integrity, Justice, Modesty, Patience, Responsibility, Reliability, and Self Discipline." There's another woman standing just behind the chair with a peace flag with a white dove on it. This is the entire mural.
Saturday, November 24, 2007
Like a meme, only it can invade your snail mailbox:
Via Grace at What If No One's Watching? -- By the end of January, 2008, I will send a tangible, physical gift to each of the first five people to comment here, so long as each of those five people are willing to make the same offer in their own LJ or blog.
I've taken the liberty of giving myself a month's more time to accomplish this. Also note that "tangible and physical" possibly means "whimsical and odd." If you respond, please also email me at kay.fine[at]gmail.com with your address.
Friday, November 23, 2007
I thought this was pretty cool. The photo doesn't say exactly where this is taken, but from other photos by the same photographer, I am guessing Laos. The available caption indicates that this was seen while working on a clinical (for nursing, perhaps) at a leprosy colony.
It is a color photo of a motorbike -- with steering handlebars like a moped -- designed with a platform so a driver using a wheelchair can roll onto the platform. It's not clear how many wheels the vehicle has but one is visible on the driver's left, and another on the right with what seems to be a passenger seat behind it. I think it is a kind of taxi service a disabled person could operate. Parts of the vehicle are beige and other parts a bright pretty blue that matches the international wheelchair symbol sign on the front of the vehicle.
Flickr photo by kasartoris
Thursday, November 22, 2007
Big family dinner today. Blogging? This is all you get here:
Image description: Me and my twin again, skinny legs and all. We're posed against a wooden door wearing identical dresses with blue-and-red plaid miniskirts and sailor tops with matching plaid ties at the collars. Our blonde hair is tied in ponytails; we have bangs. We're looking straight at the camera. It's winter in 1974 and we're five years old.
Which one is me?
Wednesday, November 21, 2007
Cilla Sluga at Big Noise and Justice for All blog have both written recently about an ad for Accessible Cities Alliance that appeared in the Herald News in Joliet, Illinois. The intent of the ACA is to "promote disability compliance in the business community," and to that end, the ad pictures four older white guys -- business leaders in the Joliet community -- using assistive equipment they don't actually need.
The ad's text reads (click on the photo of the ad to enlarge it):
Got Access?The discussion at Big Noise and Justice for All has been concerning the use of nondisabled men with props suggesting their status as disabled -- or future disabled people. Cilla says:
We do. You should, too.
By 2010, it's likely that one in three Americans will have a disability.
That's a lot of purchasing power! Is your business ready?
We encourage business owners and property managers to create and promote full access for consumers with disabilities. What does this mean? It means providing equal access to parking, entrance, goods and services and restrooms. Consider how you can increase the value of your business and expand your customer base.
The Accessible Cities Alliance is a broad coalition of local leaders and disability advocates working to create access and opportunity. ACA offers valuable information and resources. If you need assistance, let us help. If you offer full access, let us know, and then make sure your customers know, too!
Good access is good business.
Promoting disability compliance in the business community.
www.ada.411.comA message sponsored by The Herald News
None of the people pictured have a disability in the picture. The guy with the white cane is sighted; the guy in the wheelchair and the one using the walker are ambulatory without assistance; the guy using the TTY does not have difficulty using the phone. They are local politicians who should fire their campaign managers for bad judgment.She also notes that they are all white men of about age sixty -- a fairly limiting representation of "access for all."
Who thought it would be a good idea to have able-bodied people representing someone with a disability?
Comments at both blogs raise the key arguments surrounding honest and real representation: This tactic would be obviously inappropriate for messages about other minority groups. (Though, remember this German Unicef ad using white kids in blackface to promote help for African children?) The men depicted may have invisible disabilities -- you cannot assume they are nondisabled. The purpose of the campaign is to show how permeable (and growing) the disability category is. Disability simulations are ultimately destructive and do little to really show what the disability experience entails. The ad means well, wants to help, and these men aren't actors paid to fake disability.
I think the most important point to be made about this ad is that it never mentions that businesses need to comply with the law. It never mentions that there are state and federal laws requiring what the ad cajolingly promotes. It never offers information in compliance. It never notes that failing to promote accessibility through accessible parking, entrances, goods and services and restrooms is illegal.
I'm all for voluntary compliance, but shouldn't the smart business sense the ad hopes to appeal to also consider complying with the law?
Tuesday, November 20, 2007
Last night's Anderson Cooper 360 on CNN featured a segment on autism with Ballastexistenz' Amanda Baggs (and also Estee Klar-Wolfond, who blogs at The Joy of Autism). The entire show transcript is here, with the autism piece entitled "Finding Amanda" (gack!) starting about halfway down.
There should be more of the feature on Anderson Cooper 360 this coming Friday night.
Monday, November 19, 2007
Amanda Baggs of Ballastexistenz will apparently be on CNN's Anderson Cooper 360 again this evening. She was featured in an interview with Dr. Sanjay Gupta earlier this year when they undoubtedly learned she has much wisdom to share about autism, normalcy, communication and disability rights.
Amanda hasn't been feeling well lately, as she noted on her blog last week, and under normal circumstances would find the deluge of attention and requests for advice that her last appearance created somewhat overwhelming. As would I, frankly.
Anyway, she's prepared for the added attention as best she can, so check out the show (I'll post a transcript link tomorrow) and cheer her on, but try not to add to the comments and emails demanding her assistance.
I'll put my own note to her right here: Congratulations, Amanda. And thank you for your tireless work.
Sunday, November 18, 2007
Almost a year ago, I mentioned some good news about weight gain. Recall that I was starvation-level underweight just two years ago for a variety of health reasons, and also that I cannot just step on any old scale and balance on my pegs to see what's up, so checking my weight requires a clinic appointment and a rather amusing trek down the hall, out of the clinic and into the adjoining hospital to borrow an empty room with a bed that can weigh me. My primary, a couple nurses, a parent or two (and possibly some intrigued bystanders), watch as I transfer to the bed and we all discuss how many pillows and shoes will make the measurement inaccurate. Okay, there's no reason you'd ever recall the details of that last, but anyway, trust me when I say that checking my weight is An Event.
I am a little over 5 feet 11 inches tall and in November of 2005 I weighed less than 75 pounds. Then I got the feeding tube, and also the trach and vent. All three have contributed to my weight gain. The first in the obvious way, but the trach and vent help me get enough air so that eating isn't such breathless work. When I last got weighed this past spring, I was a joyful, thrilling 125 pounds. That is the most, by far, that I have ever, ever weighed.
And it feels good. I quit with the feeding tube liquid nutrients by night in hopes of not gaining too much and making it harder to transfer myself. And while I never eat much. I do eat all. the. time. It will be a gray day when my cholesterol finally forces me to eat like a responsible adult.
Image description: A color photo of the first day of kindergarten for me and my twin. We're standing in the front yard wearing identical homemade dresses with red plaid miniskirts and skinny stick legs. We have blonde bowl-cut hair and are squinting into the sun. And yes, those index cards pinned to our fronts are a cruel and humorless joke of my soulless mother: they have our names, homerooms, addresses and returning bus number printed boldly on them in case we got lost and were too stricken with the adventure of it all to utter our own names. Can you guess which one is me? My twin is barred from answering first.
I was a skinny child, and for most of my adult life I've probably weighed about 110 pounds. (Remember muscle weighs most and I don't have the ability to maintain and build that well.) I've always been skinny, with stick legs. I've gotten jealousy from other women and admiration from men for my underweight, weak-muscled thinness.
Image description: A color photo of me sitting in my scooter in a mall food court in Arizona, circa 1992. I am expressing my disapproval of impromptu photo ops with a sober look. I'm wearing a baggy white t-shirt to hide my scrawny arms and bony collarbone, but I'm also wearing a yellow flowered miniskirt and thong sandals because slim (bony) legs get compliments. I've cropped my Dad out, by the way, though he's wearing an identical expression.
And I've sort of been in awe of how my legs have changed in the past couple years. For the past year, every day, when I see them, I find myself thinking, "Whoa! There they are." Sometimes I think, "Chubby! I am actually chubby!" Sometimes I'm grateful for their relative strength. Sometimes I think, "Wow, I'm a bit fat."
I am totally not fat. I've been trying, these past months, to determine how much of my reaction is to the impressive change in my legs and weight, and how much is social conditioning about body image and what "fat" looks like. I can't separate it out. Most of us can't: you can check yourself on that by looking at Kate Harding's study of BMI classifications at Shakesville.
The above two photos are of my past skinniness. I don't have a photo of my legs as they are now and I'll give you a few days to imagine before I get around to that. They're no longer skinny and they'll never be muscularly toned, but they're also not at all fat. Even if I sometimes think that when looking down at them.
Question for all: Above, in paragraph two, when I mention "my weight gain" after having explained it was healthy and necessary, are you like me and still automatically think "weight gain" = "bad"? The word association is strong.
Saturday, November 17, 2007
I've been working on my sidebar blogroll links, adding both sites I've recently found and I've followed for a long time. I also tried to delete a few bad links, but Blogger doesn't seemed to be letting that happen. Let me know if I've screwed anything up or missed someone relevant, particularly to the disability blog section. Thanks.
ADA Restoration Act of 2007
Bipolar Chicks Blogging
Charlottesville Prejudice Watch
Day in Washington
I Have Rocks In My Head
Justice For All
Mental Disability Law
Miss Crip Chick
Scott Sands Alive
The Amazing Adventures of Team Coco
Through Myself and Back Again
Coffee And Gender
Daisy's Dead Air
Five Before Midnight
I Can Has Cheezburger?
Mind The Gap!
Photography is not a Crime
Texas And Egypt
This Is Not My Country
Friday, November 16, 2007
In the past two days I've gotten two emails because of what the senders said is this blog's "health-relatedness." One invites me to participate in a Brown University research study survey in "the area of health and medicine," and the other informs me that The Gimp Parade has won a 2007 Health Leader Award from the Irritable Bowel Syndrome Treatment website.
I haven't taken the survey yet, but I expect the questions about blogging on "health and medicine" will be as imperfect a fit as other health blogging surveys I've taken in the past. But I'll take the survey and hope my participation makes some tiny difference amidst all the "health and medicine" blogging by smarmy and/or compassionate doctor blogs, weary and dedicated nurse blogs, insurance and managed care blogs, and whatever else qualifies. And I will graciously accept any award from a site or organization that says it seeks to honor those who "are squarely on the side of the patient."
But, you all know that "health and medicine" are not the topic of this blog, right? This blog is about social issues, culture and politics relating to disability rights. I realize there's some crossover that may be confusing, especially when I relate specifics of my impairments, hospital visits and such, but those are the details of how social issues, culture and politics come into play. They're the evidence of why disability rights is important. "Health" and "medicine" aren't even in my sidebar index (except as "health care" and "mental illness/health") because I don't perceive my writing here as promoting either health or medicine. Then again, neither "justice" or "respect" are in the index and they're what I think I'm writing about here every day.
This isn't the first time I've gotten email that I feel may or may not miss the point. I've gotten offers for free accessibility software or discounted accessible bathtubs if I blog about the product. I've gotten link requests from health care corporations and, most amusingly, for President Bush's New Freedom Initiative, which I recall saying critical things about at least once prior to the request. When I hosted Disability Blog Carnival #2 and the theme was "the cure" I turned down one doctor's submission on bowel health. (Apparently, my audience includes those concerned about poo, which is possibly everyone.)
Either through poor emailing habits or formally declining, I've opted out of several writing opportunities to new sites like [with]tv, Wikis on dis rights, and Disaboom, mainly because I don't want my primary goals for this blog to be used for someone else's corporate gain. And I don't want obligations to produce content to go beyond my having something relevant to write. Well, and also I am lazy.
I often wonder how the bigger bloggers field their email requests. Do they answer all or ignore most? In my worst nightmares I cannot imagine the in-boxes of Echidne or Jill at Feministe. I get a couple nice emails from CNN and I sort of freak out, you know? Though it did end well for me.
I've gotten some truly amazing emails, as well. A couple heartbreaking letters were sent from formerly institutionalized disabled people touched by my one-time CNN blog. The lawyer for Emilio Gonzales' mother thanked me for my coverage and support. One of Ruben Navarro's caregivers wrote to thank me and share that Ruben had a great sense of humor and has inspired her to persist in the field of mental health and disability. And the back-channel camaraderie with fellow dis bloggers that I love so much.
I don't really have any problem with this blog being categorized as about "health and medicine" so long as that never disqualifies it for the "social justice" or "politics" categories. I don't consider myself a "patient" or a "client" or a "customer of health care services" here, so much as a writer and activist. And hopefully a pain in the ass. But I will concede I am definitely "squarely on the side of the patient."
Image description: A small graphic banner reads "Health Leader 2007" with the date bracketed by gold stars.
£65 is, I believe, about $130 an hour?
A Swiss welfare group is recruiting volunteers to have sex with disabled people.
The Basel-based Welfare Group for Disability and Sexuality already arranges erotic massages for people with disabilities.
But it is now providing full sexual intercourse and is also signing up gay volunteers to have sex with homosexual disabled people.
The group's leader Aiha Zemp said it was a subject that "needed to be tackled."
She said: "It's a big taboo that needs to be broken. Having sex is a basic human need like eating and drinking and we have to fight for this right for the disabled."
At present three men and one woman offer an erotic 'touching service,' and nine new volunteers have come forward to offer sex at £65 per hour.
Among the new recruits are four men, two of them homosexuals.
Zemp rejected criticism that the group were simply training up prostitutes.
"The big difference between the assistants and prostitutes is that the assistants show tenderness and are conscious of the needs of the disabled, rather than rushing and just taking the money," she said.
The LJ group No Pity has discussed this and hit on some obvious points: First, $130 bucks is a lot of money. Also, this program implies that disabled people cannot find sexual partners without paying for sex. It also suggests that the problem of physical isolation and lack of personal relationships disabled people might have is A) substantively different from nondisabled people's and that B) throwing cash at it is a good solution.
The Swiss welfare group's leader, Zemp, also asserts that sex is a basic human need "like eating and drinking." While there is scientific evidence that people -- children, in particular -- fail to thrive without human touch, I have yet to hear of anyone starving to death for lack of sex. And there are many options in the realm of human touch, in any case, that do not involve sex.
There is the point that many disabled people cannot masturbate themselves and, thus, having no partner effectively means not ever having what would otherwise be self-induced pleasure. I recall a New Mobility article some years ago about this and, specifically, how much a personal assistant should be expected to assist in the very personal. That makes for some challenging debates about privacy, choice, etc.
And, of course, the underlying and explosive topic of sex workers hides behind this all. Would volunteers -- well-paid volunteers -- be "prostitutes"? Do disabled people need "special" prostitutes? "Special gay prostitutes"? Is there anything wrong with that?
My opinion: This is icky. In, oh, so many ways. Why not spend that money on access and transport to local night clubs (or church events) that lessen social isolation? Why not use the cash for a dating service that would at least match horny disabled folk with horny devotee-types who aren't in it for the money?
I'm also curious as to just how gimpy or sex-starved one has to be to qualify for this service. It's sponsored by a "welfare group" so I expect the disabled folks aren't trading their scarce food stamps to pay for the service themselves. Can one just limp in the welfare group's doors and claim they're dying to get laid? Or, as in the U.S., are there doctor's forms and judgments to be made about just how physically inept one is to qualify for aid? Is it only physical impairment or can someone with ADD or dyslexia or autism or schizophrenia get in on the action too?
So many questions. The answer to every one: Ick.
Thursday, November 15, 2007
Back in June of 2005, anticipating the 15th anniversary of the ADA, I wrote about "The Excuse of Architecture" and cited a New Mobility story of pre-ADA prejudice, discrimination and really bad customer service. One commenter compared the phenomenon of disabled people being asked to leave restaurants (because no one wants to see them eat) to the prejudice moms face when breastfeeding in public. I disliked the comparison because the prejudice against disabled people is for being who they are while the prejudice against nursing mothers was for a (reasonable and necessary) activity they want to perform.
Although I am outraged by the way mothers in our culture are hassled for breastfeeding, I was, frankly, offended that discrimination based on disabled people's existence and simple presence was compared to discrimination based on anyone's actions, regardless of what those actions might be. It seemed reductive of my personhood and that of the members of any group of people denied access to public places because of a group identity, real or perceived.
I stand by that, so far as it goes. But the novel The Speed of Dark by Elizabeth Moon has me rethinking the complex interactions between identity, behavior and prejudice.
I've been aware of the connection before, of course. I've used a wheelchair or scooter for all mobility for 24 years now, and body language is necessarily different when you move through the world sitting down. Also, I've spent the last couple years experiencing how the use of a trach and ventilator have effected how I communicate with others and how people do or do not adjust to how my communicating differs from the norm. For example, my ability to speak past my trach partly depends upon the position of the trach. I can speak better when I lean forward, and I typically need to play with the trach a little or cock my head to control air flow past my vocal cords. This ends up sacrificing a lot of conversational eye contact, but because delays in response or an uneven voice that cuts out also complicate communication I find that behaving a little strangely is most efficient. As if I could emulate "normal" anyway, right?
Anyway, my ability to consider disability and behavior as often separate issues has been a matter of relative privilege, since a wide variety of impairments directly involve behavior or are diagnosed principally based on behavioral norms. The Speed of Dark is all about behavior and whose behavior gets to be seen as normal and whose is considered abnormal, wrong, and in need of being fixed.
It's the fictional story of Lou Arrendale, a middle-age autistic man, working and living in a slightly alternate world where people his age have had developmental assistance and workplace accommodations to mainstream them into much of society. Lou is a bit of a relic because younger generations have access to infant genetic manipulation that apparently nullifies any processing and behavioral differences caused by autism.
The bulk of the story is told in Lou's voice. I'll be honest -- the very first time I picked up this book, I didn't get very far, and it may have been Lou's voice that I wasn't ready to hear. That was over a year ago. When I picked it up again recently, I was immediately immersed, couldn't put it down, and became very invested in Lou's particular world view. Author Elizabeth Moon, who has an autistic son, won the 2004 Nebula Award for The Speed of Dark. It was also a finalist for the Arthur C. Clarke Award despite the fact that this isn't a science fiction story.
There's plenty of plot to the novel: Lou's boss pushes him and other autistic employees to take an experimental cure, Lou has a stalker hostile to him (and disability in general), and Lou also has a love interest. But it is the first-person character study of Lou, his analytical, philosophical nature, and his quest to be accepted for who he is that captivates. Despite portraying an experience she doesn't live herself, Moon has done her homework on autism. In an essay on the topic she writes:
What is it like to be an autistic individual? Only autistic individuals know for sure. Interviews with autistic people, their essays and books, all suggest that the autistic experience is just as varied as the non-autistic experience. Some people are happy. Some people are not happy. Some people have close friends. Some do not. The similarities imposed by the condition do not impose an emotional tone or even a core personality in the Myers/Briggs sense....Through the plot, Moon tackles two of the thorniest questions regarding disability: What is "normal" and what's the value of a "cure"? Lou thoughtfully explores both ideas:
One of the things which impressed me about our son, even before he could communicate in signs, gestures, or words, was the healthy quality of his emotional life. Yes, he screamed when he was upset, and I would have preferred a "Mom, I don't want to do that." But the things he enjoyed were reasonable, healthy things to enjoy: food that tasted good, music he liked, running around on the grass on a spring day. There was nothing weird about what he liked. His dislikes were harder to understand, but made sense once I realized that his sensory input was different than mine, and his responses were stronger. He felt hot when I barely felt warm. Tags in clothes (that I find only mildly irritating) bothered him a lot. He liked some colors more than others. Certain textures and flavors in food bothered him more. He liked some people and didn't warm up to others. These are perfectly normal responses in a small child--just on a different scale. His likes and dislikes tended to be more intense (typical of an earlier developmental stage: infants are usually very intense in their likes and dislikes.)
All my life I've been told how lucky I was to be born when I was—lucky to benefit from the improvements intervention, lucky to be born in the right country, with parents who had the education and resources to be sure I got that good early intervention. Even lucky to be born too soon for definitive treatment, because—my parents said—having to struggle gave me the chance to demonstrate strength of character.
What would they have said if this treatment had been available for me when I was a child? Would they have wanted me to be strong or be normal? Would accepting treatment mean I had no strength of character? Or would I find other struggles?
The construction of the novel and the metaphors used work with Lou's voice to help a non-autistic person relate to what Lou thinks and feels, what confuses and alarms him. The uncertainty of the cure Lou's boss is trying to coerce his employees to take and the information imbalance about the treatment which the boss exploits work together as a metaphor for the confusion Lou has in understanding how to navigate society and most social interaction. We can all relate to not knowing how to make a complicated decision, and in the novel's context we understand and relate to the confusion Lou faces because of his autism. That's assuming that the portrayal of Lou rings true for people with autism, of course.
Lou's hobby is fencing, and the detailed portrayal of his study and practice to improve his fencing skills works as a convincing metaphor for how treacherous and complex navigating workplace politics or nurturing a romance can be. Strategy and understanding the "opponent" are key. Fencing becomes a tool for seeing Lou's personal genius and charm as well as glimpsing what the life perspective of an autistic person might be.
Big spoiler follows. Act accordingly: The last 30 pages of the plot didn't resolve as I might have hoped, but from a literary perspective -- and a philosophical one -- Moon makes the story as compelling and thought-provoking as possible. Shorter version: I hate that Lou took the cure. I understand that his decision opens the debate up more than his deciding to accept himself as he is. On a personal level, I even relate well to the idea of using "the cure" to try something different and challenge yourself so completely. When I play with the philosophical question of a cure for my own impairments, it is not becoming normal or even being healthier that is compelling to me. It's enticing to consider taking the option that does not currently exist and challenges everything I know and am.
But I hate hate hate that "normal" wins. And I look forward to hearing what others thought of the book and topics it presents.
Other links about the novel:
2003 review in January magazine
2003 review at infinity plus
2005 review in Blog Critics Magazine
Wednesday, November 14, 2007
The ADA Restoration Act is designed to clarify who the 1990 Americans with Disabilities Act applies to in order to protect against the increasingly narrow application of the law as interpreted by the courts, particularly the U.S. Supreme Court. Tomorrow (Thursday, Nov. 15) is a day of action and support for the ADA Restoration Act as the Road to Freedom Bus, which has toured around the country to bring awareness, returns to Washington, D.C. Info on the day's events are here.
The ADA Restoration Act is meant to prevent cases like that of diabetic Stephen Orr, who was fired from his Wal-Mart pharmacy job in Nebraska for taking 30-minute lunch breaks to help maintain his insulin level. His boss told him he was fired for his disability, but a judge ruled that because diabetes can be managed with insulin, Orr did not qualify as disabled under the ADA. Another example of the courts limiting the application of the law beyond all logic was last May's ruling by the Eleventh Circuit that "mental retardation" is not a disability under the ADA.
As Mark Siegel of The 19th Floor notes in commentary at BBC's Ouch!:
This kind of strained reasoning is indicative of society's misguided impulse to assess disability on the basis of, dare I say, freakishness. People in wheelchairs, people who are blind or deaf, people who talk to the voices in their heads; their obvious otherness makes it so easy for society to label these people as disabled. But when the distinction isn't as apparent, as is the case with most hidden disabilities, we become much more diffident. The legalistic notion that this person or that person isn't "disabled enough" is not so different from whistling while passing the graveyard; it allows us to ignore some uncomfortable truths. It allows us to ignore the fact that many perfectly normal-looking people can have significant impairments that can dramatically affect one's life. It allows us to ignore the fact that the gulf between disability and so-called "normalcy" isn't as wide as we might imagine (or hope).
The notion that some disabilities can be made to simply go away is a fiction and almost childish in the wishfulness it conveys. Diabetes can be managed with drugs in the same way my condition can be managed with a wheelchair. But in both cases, the underlying impairments and their complicating factors remain. The person with diabetes just looks more able-bodied. And in this culture, looks are everything.
Truthfully, the entire focus upon membership in the disabled class is a deeply flawed way of protecting against discrimination in the first place. It feeds upon a mythical, binary idea of "able" and "unable". A persistence in judging the plaintiff first before ever looking at the actions and motives of the defendants encourages the persistence of the medical model where the ultimate fault of any discriminatory situation depends on medical diagnosis.
Other related links:
Reunify Gally's Restoration Act coverage (the blog's title refers to the need for unity at Gallaudet University)
Ian Johnson on the "token representation" in the ADA
The Road to Freedom blog coverage of the bus tour around the country
A photo gallery of the bus tour and the events the tour was a part of
The ADA Restoration Act of 2007 blog by the AAPD (American Association of People with Disabilities) -- includes links to the full texts of the act from both Congressional houses, a list of Congressional sponsors, talking points for the act, real case stories and a history of relevant court cases
Tuesday, November 13, 2007
Here are some recent searches that led to this blog. The first three make sense with regard to what I post. The others are interesting but obviously not my area of expertise. The last one confuses me utterly -- but I suspect the person making that search wasn't quite clear in the head either:
Chad Everett Medical Center
unable to pee on plane
preventing puberty in the disabled
why did diego rivera treat frida kahlo wrong
crazy parades in virginia
Natalie Merchant's rack
gimp tooth twinkle
squanto helped save this person's life?
famous stars that crip what sets they in
Monday, November 12, 2007
It was Anne Sexton's birthday last week. I don't know if Hugo Schwyzer was aware of that when he posted about her work, particularly the poem "Live," but both the poem and his comments on mental illness are well worth a read.
Sunday, November 11, 2007
This past August really sucked. September did too. I got a routine feeding tube replacement at the end of July and then had weeks of agony every time I ate because the new tube was not placed right. There was too much of it in my stomach, it turns out, and when I ate the balloon at the end of it slipped down to block food from exiting into my intestines. I felt like I was being poked with a sharp stick from the inside. I was hungry all the time, then had intense pain when I dared to eat.
Of course, the cause of my pain went undetermined for all of August and half of September. It took some persistence to get medical personnel to just get that thing out and try a new one, please. And after a replacement fixed everything so that I was immediately pain-free, there was never an acknowledgment that it was the installation that caused the problem. I didn't even press for that because, well, I know the game. And I also know mistakes happen, I'm often a peculiar case to treat, and excellent doctors can do their best and still not have it work out. It may have been gross incompetence or a routine but regrettable error, and I know I won't get an official medical answer on that. I satisfy myself that I know more about who and where the risks are for the procedure and the institution I go to for it.
But that drama isn't what I want to write about.
On the day I got the successful replacement in mid-September, I first consulted with the doctor in the out-patient recovery unit. See, the painful tube was installed by a doctor I'd never met before. The guy who'd always done it before and who successfully fixed it is the one I've noted before seems to be pretty rude. I'll call him Doctor A. Doc A made some sensible comments in that consultation, saying he'd like to fix one thing at a time -- first the pain, but maybe next replacement I could switch to a Mic-Key tube. I have a G-J PEG tube which I describe here. The Mic-Key goes only to the stomach and is just a button on the outside rather than a tube and ports for both the stomach and jejunum.
In our consultation, Doc A suggested the Mic-Key and I explained that the whole reason I got the feeding tube to begin with is because of stomach troubles that made the jejunal port the key part of my anti-starvation strategy two years ago when I entered the hospital weighing 75 pounds. I can still swallow enough that I eat all my food by mouth now (and have for the last year or so since gaining weight and strength because of that tube), and while eliminating the feeding tube entirely might be a legitimate proposal, eliminating just the part of the tube that has been particularly life-saving for me does not seem logical.
Doc A seemed to accept all that in consultation. Our first priority was to change what he (correctly) thought from examining a week-old x-ray was an improperly placed tube. The week-old x-ray was from a consultation with Doc B, the doctor who had installed that painful tube. B didn't see anything wrong, but A had viewed it and immediately called me to tell me to come in and get it replaced since it looked all wrong to him. So, the Mic-Key tube wasn't the immediate issue anyway.
Then I got in the x-ray room and up on the table under the fluoroscope for the procedure. They took a preliminary look and found my wrongly-placed tube had migrated since the week-old x-ray and looked just fine where it was. (Possibly because I was avoiding food at all costs.) Suddenly Doc A wanted to leave it alone, or put in the Mic-Key. He believed the pain issue solved and had ticked it off his mental list.
I was laying prone on the table, unable to speak while horizontal, as is often the case with my trach. He was pushing for the Mic-Key, explaining how simple and attractive, how less-complicated and more comfortable it would be. The x-ray tech and assisting nurse chimed in.
"Just nod yes and we'll put it in," Doc A said. "Just nod yes. Just nod yes."
Fuck that, eh?
My personal nurse stepped in and said I needed to sit up to speak my mind. So they propped me up enough that I could tell them, "No. No no no no no!"
Get this painful thing out, please. Give me what has worked fine for the past year-and-a-half.
Doc A argued that we could put in the Mic-Key now, and I could always come back and reinstall a G-J PEG if I had trouble down the line. No problem. We'll change it when you say.
"I'm tired of being hungry," I said. If I have stomach trouble I want food that same day, in my jejunal tube.
The x-ray team tried to persuade me: "The longer you have a tube, the more trouble it is. We see this all the time. The Mic-Key is just a cute little button. You'll hardly notice it's there. If it doesn't work you can always come back."
"I've been back. I was here last week. I'm still wearing a damn diaper from the diarrhea-causing contrast dye* from that useless visit. I am hungry. I'm tired of being hungry today."
Doc A did change the tube as I wished. Reluctantly but kindly. And it's worked perfectly ever since.
But when they were saying this: "The Mic-Key is just a cute little button. You'll hardly notice it's there."
Here is what I heard: "If you work harder, you won't need a wheelchair at all. Won't that be nice?"
And: "Show me someone who can't walk, and I'll show you someone who's depressed."
And: "Wouldn't it be great to get off the vent and not have to lug that thing around?"
The answer: Appearance and conforming to the social norm is not in the interest of my health or quality of life. Sitting down to move through the world, when I finally did that in 1983, was a huge relief to me. I could engage with the world rather than being exhausted with the effort of just showing up. Ditto for the vent. Having energy is not depressing in the way that feeling like you're so short of breath you might pass out drags you down.
I don't know what mix of good medical advice and pressure to have me meet an able-bodied norm fueled Doc A and his x-ray staff. I know both were present, as well as A's apparent failure to listen to me in that consultation. In addition to Doc A's expertise in righting another doctor's wrong, here's what I take away from that outpatient visit: I am never safe. They may not be listening to me. They will ambush me when I am least able to speak for myself and try to do their own thing. Their actions will be motivated by medical knowledge and able-bodied assumptions about what I want and need. I am never safe.
*Dye injected into the feeding tube shows up on the fluoroscope to assist proper placement. Until it works its way from my very slow-moving digestive system, it's all liquid poop.
Saturday, November 10, 2007
A long long day, so just a couple of links to newish blogs that are excellent resources for disability news and commentary:
Patricia E. Bauer -- She seems to have every disability news story I come across already posted.
Not Dead Yet blog -- Stephen Drake provides commentary on media coverage of the most pressing disability issues.
Posted by Kay Olson at 11:56 PM
Friday, November 09, 2007
Warning: Someone to gawk at ahead
Image description: A roadside warning sign. A white triangular sign with a red boarder has an image of a horse drawing a cart with international symbol wheelchair guy sitting in the cart. His chair is larger than the horse. Signs below read "Disabled drivers, 100 yds".
Intriguing, isn't it? Are there actual horse carts like this up ahead? And what about that, exactly, warrants a warning? Are the horses particularly stressed? Are the drivers especially bad? Or did the local municipality decide this was so interesting that tourists need advance warning of what they will see?
Photo credit: Flickr's glenwe de
Thursday, November 08, 2007
Today's latest Disability Blog Carnival, up over at Pitt Rehab, is the 26th. (I know!) Greg's theme is "How do you relax and unwind?" I didn't contribute, mainly because instead of relaxing and unwinding, I've been working on how to get over being really really pissed off.
This (below) helps when loud, though the video just makes me laugh. It's a YouTube music video for the Finnish band Apocalyptica. The song is "Path" and the band consists of several cellists and a drummer playing metal music. The video is filmed in black and white. Four cellists are lined up, their long shadows cast on a wall before them as they thrash their heads and saw at their instruments. Sometimes the shadows reflect their movements and sometimes they seem to be playing against them, back and forth, call and answer.
So, check out the carnival at Pitt Rehab. Past carnivals and info about the carnival, generally, is available here. And the next carnival will be at Astrid's Journal on Thursday, November 22, the Thanksgiving holiday in the U.S. The theme is "Transitions" and submission deadline is the Monday before.
I wish the internets had been big back in the '80s so there'd be an online record of Marian, my best friend in college. My first roommate away from home. My mentor in being a disabled girl out in the world.
She died 18 years ago today.
She was waiting for me when I arrived at the dorm with my mother and a breathless freshman naiveté. She was excited to meet me and become friends. She taught me how to ride the public buses with their brand new wheelchair lifts and ignorant drivers. She introduced me to crip culture. She was my best friend. She was hilarious and wise.
Her life had always been hard. She never knew her birth father, he'd left Marian's mother alone and in poverty. When Marian's juvenile rheumatoid arthritis became critically expensive, Michigan's child protective services took her away from her Mom and siblings and stuck her in foster care. Some homes were good, some were cruel. She spent time in hospitals and at Easter Seals camp. She almost died in a house fire once.
At 16, some kind neighbors apparently helped her just leave the unhappy home she was in and fly across the country to her mother, siblings and a new step-dad. Well, she always described it as a flight, an escape. She was emotionally intense. She'd learned early that you have to hold tight to the ones you love.
This dreamy blind guy once carried her up "A mountain" -- the very large rocky desert hillside bordering campus -- to watch an Arizona sunset. She was a semester away from getting her psychology degree when she died. She was going to counsel troubled teens. Someday she planned to have children. She'd already outlived all life-expectancy estimates, but she had big dreams.
She was generous and thoughtful. She entered the hospital on my 21st birthday and died there three weeks later on November 8, 1989. She left behind birthday presents she hadn't had a chance to give me, and already-wrapped Christmas presents for many people, anticipating the holidays.
She never lived to see implementation of the ADA.
I didn't take many pictures. I didn't know how little time we had. But this is Marian in our dorm room (my sophomore, her junior year) preparing to brave an Arizona monsoon rain (yes, she's sitting in front of that closet door). She's a short blond woman sitting in an Everest & Jennings motorized chair wearing one of those clear plastic "scarfs" over her hair and a white trash bag over her lap. The sink and closed door of our dorm room are behind her, with a life-sized poster of Patrick Swayze on the door.
And these last two photos were taken exactly one year before she entered the hospital. My 20th birthday. She gave me the stuffed purple dinosaur, Sam, and took me to dinner while other friends toilet-papered our room. We're with Anne, from that "pickle for three". In the first photo, Marian smiles at the camera. She's wearing a light blue tie-dyed t-shirt dress and holding my stuffed dinosaur, which has a toilet paper bow around it's neck. My bed behind her has a pink quilt and posters on the wall above it including one of Sting and one that says "Peace".
In the second photo, Anne, Marian and I sit at a restaurant table with glasses of wine and happy smiles. Anne is a tiny woman sitting in an Amigo scooter. I've got Veronica Lake hair and an embarrassingly large turquoise bolo necklace. I'm also drinking in a restaurant while underage because no one had the nerve to card a bunch of noisy women in wheelchairs.
I cannot believe it has been 18 years. I was so alone at college after she died that I nearly dropped out. For better and worse, my undergrad years were, emotionally, all about my friendship with Marian. Her joyful friendship, clingy intensity, illness, and the enduring grief.
She's so far away. So close. I often forget this anniver- sary. It was a sunny day when the painful vigil ended. My October birthday, her first day in the hospital and away from me forever, was the day I really lost her and the day I truly started to become an adult. This is pretty maudlin, but I haven't thought deeply about Marian for a while now, though she was clever enough that my family quotes her frequently. Even when I don't mention her name, she's a presence everywhere on this blog.
Wednesday, November 07, 2007
It feels like winter coming here at the Gimp Compound. This past weekend, my father put up his little hand-turned wooden dish bird feeder and set out the winter birdbath on the back deck, which has been cleared of patio furniture for the season. The hand-turned feeder is about an eight-inch dish attached to a two-foot dowel and hung from the edge of the eave just outside the picture window I face when I enjoy my morning tea. The winter birdbath is heated, and wasn't plugged in at first, but the water froze solid yesterday, so it's a little birdy hot tub now.
The winter bird accommodations bring the wildlife right up to the picture window instead of 15 feet out at the oak tree bordering the back deck, though the suet feeder gets attached to the tree trunk for the winter and will become a popular lunchtime destination too. The past couple days there've been chickadees, nuthatches, juncos, downy woodpeckers, sparrows and finches at that little feeder a few inches from the glass. They eat a bit, then notice the shape of me through the window at a table about five feet away and they stretch and tip their heads to focus an eyeball in my direction with curiosity and concern. And they chatter to each other. Drive the cat wild inside. The squirrels look for dropped seeds under the feeder and sit eyeball to eyeball with the cat while she twitches uncontrollably.
Last week, the pileated woodpecker came to see if the suet was up yet. It wasn't. I sat with my tea, frozen motionless, while the massive 15-inch male crept up the tree trunk, peered with paranoia all around, then resignedly flew away. And today there was squirrel sex. Lots of it. In the oak tree, in the neighbors' oak tree up high -- a hundred feet off the ground. Much exuberant molesting of each other throughout the afternoon.
Life inside the picture window is much duller. Me, I'm exhausted from a night spent training a brand new nurse. All went great, but I never sleep well the first few nights with someone new around, so I'm tired and off to bed early tonight.
But check out my friend Grace's post on Wilma Rudolph. Wilma was my first hero. I read her autobiography when I was in grade school, and long before I identified as disabled or used a wheelchair I thought she was the most amazing person on earth. I'll do tomorrow's post now too, early, about another hero of mine.
Tuesday, November 06, 2007
Liz Crow and her Roaring Girl Productions is my biggest blogging failure. Liz and I first exchanged emails well over a year ago and I volunteered to interview her and discuss her work. I linked to clips of one of her award-winning short films, Frida Kahlo's Corset back in July on the 100th anniversary of Kahlo's birth, but have never managed to cough up interview questions for Liz to answer.
And I still haven't done that. Nor have I actually seen her full productions beyond the generous info at her website (that info includes film clips, stills, and scripts, by the way). But let me list a few of the many things that fascinate and thrill me about her work:
1.) Her documentary film The Real Helen Keller explores the famous woman behind the iconic deaf-blind celebrity. Here's the film script (.pdf), which is an excellent read by itself:
Narration: Helen was one of the first people to understand that charity was not the answer. She recognised that disabled people lived in poverty because they were excluded from jobs and that poverty in turn created illness and impairment. She argued that what was needed was radical change.2.) Her short experimental film Frida Kahlo's Corset.
In an era when venereal disease was a leading and unmentionable cause of blindness, she was willing to campaign on this in the press.
Georgina Kleege (author of Blind Rage): People were scandalised when she wrote about it, because she had to write about venereal disease and sexual promiscuity and issues she wasn’t supposed to think about. But at the same time she talks about the issue obviously as a woman’s issue, a woman’s health issue. She also perceived it as an economic issue because she understood that more affluent women would have access to better healthcare, so for her it was information that needed to be given to less affluent women, so that they could make demands of whoever was providing healthcare to them. So she had a mind, it seems to me, that made these sorts of connections that other people weren’t making.
3.) Her project to design the Access Tripod, a tool that would allow wheelchair-using filmmakers to run a handheld camera themselves instead of directing someone else to capture their creative vision.
4.) And her experimentation with ways of making films more accessible to all viewers. Anyone who has ever tried to use the captioning feature tacked onto a commercial film DVD has experienced how separate the accessibility features are from the film itself. Sometimes the captions are ridiculously inaccurate*. Sometimes text is unreadable or descriptions incomplete. Often, it's not an available feature at all. In my family, that means one person who is hearing impaired misses out on much of the dialogue and the shared experience is lessened for us all.
Liz's company is exploring new ways of using captioning, sign language and audio description (ACS) as an integral part of the creative process of her films. Does it make me a film geek that I find this incredibly exciting? Maybe.
Anyway, Liz Crow has been short-listed for a DaDa Award under the category of "New Media" and it's time for the public to vote. The DaDa Awards are sponsored by NWDAF, the North West Disability Arts Forum, based in Liverpool, England. NWDAF is dedicated to promoting equal access to art for all disabled and deaf people, from celebration of disability culture within art to employment to full audience access.
Anyone can vote. Vote before November 27. And check out the other nominees in all eight categories too.
Other links about Liz's work:
Netribution Film Network interview with Liz Crow about Frida Kahlo's Corset
21 Things to Remember, a short film by Liz Crow (link is to "clip 1" with "clip 2" available below it providing audio description)
*One of my all-time favorite films, Jesus of Montreal, has captioning where something like this frequently occurs: The character on screen clearly says, "I'm 18 years old" while the text just below reads "I'm 23 years of age."
Monday, November 05, 2007
Image description: A large piece of butcher paper hangs in an outdoor display of drawings by preschoolers prompted by the question "What happens when people get old?" This paper shows a simple line drawing of a character in a wheelchair. The character looks a little like a mouse's head sticking out of a large square cart on wheels. Below an adult has printed a child's thoughts, "You go in a wheelchair. Your body is a little twisty."
Sunday, November 04, 2007
The Fall 2007 issue of the Society for Disability Studies' journal, Disability Studies Quarterly, is available free online. The topic is "The State of Disability in Israel/Palestine." It sounds like this particular issue will remain available for free, and there is some talk of expanding that access to all future issues, which would be great. I hope that would include past issues as well.
The latest issue of the Review of Disability Studies: An International Journal is available in .pdf and .doc formats here.
The second issue of the Journal of Literary Disability, on the topic of "Disability and the Dialectic of Dependency" is available here.
The third issue of Wordgathering: A Journal of Disability Poetry is available here.
And, because it might interest writers, M/C Journal: A Journal of Media and Culture, which focuses each issue around a one word theme (the current issue is about "error"), has an upcoming issue that will explore the meaning of "able". Submission info here.
And finally, the CFP for the Society for Disability Studies' annual conference, in New York City, June 18-22, 2008, is available here.
Feel free to use the comments to link other relevant journals or CFPs.
Saturday, November 03, 2007
Last month, scientist James Watson, who won the Nobel back in 1962 for his work in understanding the Double Helix structure of DNA, was busy apologizing for his remarks that Africans are less intelligent than other folks. Undercover Black Man reports this isn't even the first time this year the 79-year-old has been compelled to backpedal and apologize for offensive comments. Actually, he's got the sexism, homophobia and ableism going just as good as the racism, as noted in a Washington Post column by Michael Gerson:
In 2003, Watson spoke in favor of genetic selection to eliminate ugly women: "People say it would be terrible if we made all girls pretty. I think it would be great." In 2000, he suggested that people with darker skin have stronger libidos. In 1997, Watson contended that parents should be allowed to abort fetuses they found to be gay: "If you could find the gene which determines sexuality and a woman decides she doesn't want a homosexual child, well, let her." In the same interview, he said, "We already accept that most couples don't want a Down child. You would have to be crazy to say you wanted one, because that child has no future."So let's just look at Watson for a moment. He's Mr. DNA. He was the head of the Human Genome Project, the mapping of our genes to determine which genes cause which traits, variations and health conditions. He's the guy who was in charge of discovering the most basic information about how human beings differ from one another. And his opinions about those differences? Africans lack intelligence, girls should be designed to be pretty, dark-skinned folk can't keep their pants zipped, and there's no problem or social loss to identifying and eliminating gay people and those with Down Syndrome before they're ever born.
These ideas Watson has about whose genes are good and whose are inherently bad are not random and unconnected. And I suspect it's also no coincidence that everything he's not (African, female, gay, developmentally disabled) falls short of being equal or worthy.
Watson is not typical of the scientific community when it comes to his extreme social application of genetics. But this controversy illustrates a temptation within science -- and a tension between some scientific views and liberalism.I don't know exactly how atypical Watson's beliefs are, but they're not as rare as Gerson indicates -- especially with regard to Down Syndrome and abortion. Gerson continues:
The temptation is eugenics. Watson is correct that "we already accept" genetic screening and selective breeding when it comes to disabled children. About 90 percent of fetuses found to have Down syndrome are aborted in America. According to a recent study, about 40 percent of unborn children in Europe with one of 11 congenital defects don't make it to birth.
No one should underestimate the wrenching challenge of having a disabled child. But we also should not ignore the social consequences of widespread screening of children for "desirable" traits. This kind of "choice" is actually a form of absolute power of one generation over the next -- the power to forever define what is "normal," "straight" and "beautiful." And it leads inevitably to discrimination. British scientist Robert Edwards has argued, "Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease." A sin. Which leaves disabled children who escape the net of screening -- the result of parental sin -- to be born into a new form of bastardy and prejudice.Gerson apparently equates science with liberalism, and that correlation would be an interesting side debate, I suppose, though Watson certainly isn't sitting at the same progressive campfire as I am. Given his record, lets not pretend that Watson holds the liberal view of egalitarianism in any special esteem. Why does Gerson focus his criticism on liberalism? Possibly because the prejudices of the right are usually obfuscated by the anti-choice stance that does appear to accept developmental disability (and gayness and race) as part of the glorious diversity of human life, until it comes to funding things like special education or Head Start. Prejudices on the left can be seen as simple hypocrisy, something much easier to point a finger at.
This creates an inevitable tension within liberalism. The left in America positions itself as both the defender of egalitarianism and of unrestricted science. In the last presidential election, Sen. John Kerry pledged to "tear down every wall" that inhibited medical research. But what happens when certain scientific views lead to an erosion of the ideal of equality? Yuval Levin of the Ethics and Public Policy Center, a rising academic analyst of these trends, argues: "Watson is anti-egalitarian in the extreme. Science looks at human beings in their animal aspects. As animals, we are not always equal. It is precisely in the ways we are not simply animals that we are equal. So science, left to itself, poses a serious challenge to egalitarianism."
"The left," Levin continues, "finds itself increasingly disarmed against this challenge, as it grows increasingly uncomfortable with the necessarily transcendent basis of human equality. Part of the case for egalitarianism relies on the assertion of something beyond our animal nature crudely understood, and of a standard science alone will not provide. Defending equality requires tools the left used to possess but seems to have less and less of."
Gerson says the "temptation of eugenics" involves a reductionism of individual human value into the tangible or quantifiable. While his point is an important one, and one I find especially important as a disabled feminist, he's reductionist himself in the way he shrinks the messy real-world issues of reproductive justice and choice for women into wobbly liberalism. And using Watson and his history of both scientific excellence and ideological bigotry to batter science and liberalism together is a cheap partisan strategy that fails to support the very people he criticizes Watson for devaluing.
h/t to Justice for All