Monday, December 31, 2007


How many different ways could this upcoming movie (a remake of a 2002 Hong Kong thriller, Jian gui) go wrong on disability? Somewhere there's a disability studies student giddy with the possibilities in this IMDB blurb:
In The Eye, Jessica Alba stars as Sydney Wells, an accomplished concert violinist who has been blind since childhood. Undergoing a double corneal transplant, Sydney's sight is restored -- but her happiness is short-lived, as unexplainable shadowy and frightening images begin to haunt her. Are they a product of her imagination or horrifyingly real? While her doctor (Alessandro Nivola) and sister (Parker Posey) start to question her sanity, Sydney is soon convinced that her anonymous eye donor has somehow opened the door to a terrifying world only she can now see.

Sunday, December 30, 2007

Sunday paper tells the right story

So I looked at the front page of the LA Times today, and said, "Hey, I know them!" David Denney was a classmate of my son's a few years ago; I remember that his mother Amparo always worked for the best in their classroom. She's a great advocate for David. Their family was featured in a front-page feature story in the LA Times--but I was glad to see it wasn't the usual horrid cliched "what a burden, what saints" story about the family of a disabled kid.

Instead, this is a story about an insurance company's decision to deny the home nursing David requires, nursing that it had previously covered year after year. It explains the hoops, the forms, the calls, the letters, the appeals that followed... and how the family accessed Medi-Cal, our state's medical insurance program, to keep their son alive while the fight for continued coverage continues. The value of David's life and his status as a beloved son are never questioned here--as they too often are in stories about other families, other kids--the insurance company's decision and its impact on the Denneys are the focus of this story, and rightly so.

Definitely living!

smiling child[Image description: Smiling blond boy in a zip-up hoodie, sitting in a cylindrical playground structure made from red mesh.]

Jacqui at Terrible Palsy says, "You all know how much I hate the media portraying a person as suffering from cerebral palsy. So I was thinking to myself - how come they can’t say that a person is living with cerebral palsy." She follows this with some joyous recent photos of her kids--definitely living, not suffering! I'll follow suit. Here's my boy Jake, at left, not suffering at all, at our favorite park last spring (cerebral palsy isn't his primary diagnosis, but it's one of the many boxes we check on his medical forms).

Friday, December 28, 2007

December 28: Elizabeth Ware Packard (1816-1897)

Elizabeth Packard
"Thus the most sensible people on earth are exposed to suffer a life-long imprisonment, from the folly of some undeveloped, misguided person. And the tendency of imprisonment itself is sadly detrimental to a person who has intelligence enough to realize that he is held under lock and key. To persist in treating them as though they were unable to take care of themselves is to undermine self-reliance and self-respect. In short, it tends to destroy all that which is noble and aspiring in humanity..."

--Elizabeth Packard,
The Prisoners' Hidden Life [1868], p. 248
Nineteenth-century American patients' rights advocate Elizabeth Ware Packard (portrait at left) was born on this date in 1816. Her pastor husband had her committed to the Illinois state lunatic asylum in 1860, because she was argumentative and disagreed with him on religious matters. Three years later, she was discharged, but it took a court case (Packard v. Packard) to determine that she should not be confined to her home.

Mrs. Packard went on to work for better legal protections for asylum inmates, like the right to send and receive mail; for more oversight of asylum superintendents; and for married women to have the same protections as others under commitment laws. She published her story and her positions in several books, which are available online.

A play and a museum exhibit earlier this year in New Jersey both focused on Packard's personal story and public career.

Friday, December 21, 2007

Blue Christmas/Darkest Night services

newspaper clipping
[Image: a newspaper announcement for a "Blue Christmas" service tonight.]

Across North America, churches (mostly mainline Protestant or interfaith congregations) are offering "blue Christmas" or "Darkest Night" services tonight, in recognition that not everyone experiences the holidays as a time of joy and celebration. They invite folks who, for reasons related to depression, anxiety, pain, loneliness, grief, or personal crisis, want to avoid the traditional jollity and cheer of community gatherings, to attend a winter solstice service that more closely reflects a complicated relationship with the season.

I haven't attended one of these services, but the effort is encouraging: better than casual "hey, cheer up, it's Christmas" responses, anyway. It may be a once-a-year thing for some congregations, but in others, such offerings could well represent a broader commitment to respect and address difficulty and diversity.

December 21: Laura Dewey Bridgman (1829-1889)

Laura Bridgman
Her face was radiant with intelligence and pleasure. Her hair, braided by her own hands, was bound about a head, whose intellectual capacity and development were beautifully expressed in its graceful outline, and its broad open brow; her dress, arranged by herself, was a pattern of neatness and simplicity; the work she had knitted, lay beside her; her writingbook was on the desk she leaned upon.-From the mournful ruin of such bereavement, there had slowly risen up this tender, guileless, grateful-hearted being.

--Charles Dickens, on Laura Bridgman

Laura Dewey Bridgman (shown in a late-life portrait, above left) was born on this date in 1829, in Hanover, New Hampshire. She was the third child in a farm family, but when she was two years old, the older sisters died from scarlet fever; Laura survived, blind, deaf, and without her senses of taste or smell. The Bridgmans developed a set of home signs, for Laura to express her needs, and for her parents to make simple requests or give praise; by age 7, Laura had also learned to sew, knit, and make beds.

In 1837, Laura Bridgman was enrolled as a student at the Perkins School for the Blind in Boston, under the direct instruction of Samuel Gridley Howe. Howe saw in Bridgman a blank slate for proving theories of education and the mind; ignoring her earlier learning in the family home, he touted her as a perfect subject for his experiments in language. She learned to read raised-letter text fairly soon, and fingerspelling enough to communicate with others; Howe's reports include long quotes from their tutorial conversations. Howe made Bridgman a star attraction at the school's "Observation Days" events, where the public was invited to see the work of the school in exhibitions and tours. Charles Dickens made a visit to Perkins to see Laura Bridgman in 1842. A chapter of Dickens' American Notes is about Bridgman.

In 1843, Samuel Gridley Howe married Julia Ward, and left the day-to-day care and teaching of Laura Bridgman to his assistants; she became a teenager, no longer a sweet child, nor a novelty to the public. She had learned a great deal, but did not show the spark of genius Howe hoped to find, and he was disappointed in his project. She tried to return to her family in New Hampshire, but none of them could fingerspell with her, and she eventually lived at Perkins for
the rest of her life, helping around the school, teaching some. Late in her life, Laura Bridgman met young Helen Keller, when she came to Perkins; the rather formal New Englander scolded the boisterous Southern girl to "wash your hands," and complained afterwards that Keller had untidy fingernails.

In 2002, Bridgman was the subject of two new book-length biographies:

Elisabeth Gitter, The Imprisoned Guest: Samuel Howe and Laura Bridgman, the Original Deaf-Blind Girl (Farrar Straus Giroux 2002).

Ernest Freeberg, The Education of Laura Bridgman: The First Deaf and Blind Person to Learn Language (Harvard University Press 2002).

See also:

Douglas C. Baynton, "Laura Bridgman and the History of Disability," Reviews in American History 30(2)(2002): 227-235. [a review of Gitter and Freeberg]

Ernest Freeberg, "'An Object of Peculiar Interest': The Education of Laura Bridgman," Church History 61(2)(June 1992): 191-205.

Thursday, December 20, 2007

Marty Omoto, "Remembering the Past"

This is a new commentary by Marty Omoto, director/organizer of the California Disability Community Action Network (CDCAN). I've mentioned before how valuable the frequent email newsletters from CDCAN are; Omoto's personal commentaries are less frequent, but also well worth a read--and because this one is about disability history, I'm even more inclined to share it. (I added links where appropriate.) His email says "It's okay to forward this, just provide attribution." Thanks, Marty! Keep up the great work.-- PLR

by Marty Omoto (December 2007)

Recently, the remains of about 40 children and adults with disabilities and other special needs, originally buried in unmarked graves during the late 1890's on the grounds of the now-closed Stockton State Hospital (45 miles south of Sacramento) were reburied. They were among the estimated 25,000 children and adults with developmental disabilities and people with mental health needs who lived and died in California's state hospitals between the mid-1880's and 1965.

During that time period, those 40 children and adults in Stockton, like the thousands of others buried in other places at that state facility and other state hospitals, were considered "invisible" members of society and ignored by the rest of the world even when they lived. Those without families to claim their bodies when they died, were often put into unmarked graves and were forgotten as quickly as the last shovel of dirt that covered them.

The California Memorial Project, a collaboration of people with mental health needs, people with developmental disabilities and other advocates, along with state and local agencies, helped to identify those persons forgotten and buried, and to remember them with the respect and honor that they never received in life.

Dick Jacobs, executive director of Valley Mountain Regional Center, observed that recent reburial in Stockton and recalled that during the original excavation of the unmarked graves "...One of the crew reportedly wept openly while exposing the remains of a little girl who was apparently buried with nothing other than the plain shift that 'inmates' wore in those days. Perhaps he was hoping to find the remains of a doll, I don't know."

Remembering the past is always linked to how we live in the present and view our future. The California Memorial Project, like other efforts to remember the past, is also about honoring those who died, and respecting people now. That is something important for all of us to understand, not just in the disability community, but also for policymakers and others in our State and nation.

It also has some important lessons to teach us as advocates and policymakers in the coming months, whether in health care reform or how the State responds to a budget crisis that grows worse each month.

Remembering the Good Things and the Bad
Certainly remembering the past means remembering the good things this country has done and the progress it has made in human rights. Certainly there is much for all of us to be proud of. There is no better country, and no better ideals as expressed in the Constitution than the United States of America.

But the California Memorial Project and other efforts, including remembering the Holocaust or the internment of Japanese-Americans during World War II and other terrible chapters in our past, is important because it also reminds us how often our country has badly treated people because of differences in color, because of disabilities, gender, age, because of mental health needs, because of sexual orientation, because of income status or what other country they immigrated from.

Yes, our country has changed dramatically since that time in Stockton over a century ago, and will continue to change. Hopefully the good changes will outweigh the bad, or at least correct the bad things of the past.

But there are bad things happening now - and bad things that many fear will happen in the coming months.

Another Important Reason to Remember the Past
George Santayana once wrote that "Those who cannot remember the past are condemned to repeat it."

So there is another important reason to remember.

It is important for us to also remember that the rest of the world, and the rest of the country during that time and times more recent, claimed it "did not know". Some people during that time were simply indifferent, because they did not care or had other important things to worry about.

We need to remember that indifference, not hate, as Elie Weisel once wrote, is the opposite of love because it is often more destructive, more insidious and more shameful. Indifference means that good people stand by and do nothing to stop an injustice, to correct a wrong or to cry out for help while another is being hurt.

Indifference is the silence that lies, it is the trust in things that betrays our values. It is the evil that stands by and allows shameful and bad things to happen, whether 100 years ago, or 50 years ago, or here and now.

Less than a half century ago, many people thought it was okay to isolate people who were different either through poverty, because of disabilities or mental health needs or color. Even more people would have claimed they did not know or through indifference claimed they did not see.

They did.

Now, over some 50 to 100 years later , how does that past - and the subsequent things that have happened - matter to us beyond simply remembering the people who died and were treated so shamefully? Or are we condemned to repeat the same mistake again?

Lessons in Advocacy In Remembering Our Past
Frederick Douglass once wrote that "when poverty is enforced, when justice is denied, when anyone feels that government is an organized conspiracy to rob, or oppress them, then no one, no property is safe...."

So the lesson for us to learn in remembering, which is a constant part of our never ending training in advocacy, is that when people are treated as non-entities or not deserving, if a people are looked on as invisible or powerless, then bad things are almost certain to happen to them.

To us.

And yet because we are one community - whether we believe it or not - when that happens, the whole nation, the whole world is degraded. To really honor those who died over a century ago. for those who died more recently up to 1965 in those state hospitals, cast into graves without dignity or respect, means that we need to also remember that decisions on policy that allowed those things to happen, were made by those who "show up" and were allowed to also happen by the people who didn't.

"Showing up" means not just a physical presence, it means that all of us - our families, our friends, our neighbors and co-workers need to "show up" and take action. It means not being silent and not being indifferent.

Now it is December of 2007 and California now faces a $14 billion shortfall that is certain to be addressed by policymakers by massive budget cuts and reductions.

And what is also certain is that pretty bad things will be proposed that impact children, adults and seniors who live in what I have called the "Other California" - people with disabilities, seniors, people with mental health needs, children and families and workers who are poor.

Many good policymakers - and many other Californians - will allow bad and shameful things to happen and claim indifference or that they did not know.

They do.

In reconciling our past with the reburial of 40 children and adults with disabilities, with mental health needs who were shamefully disposed of in unmarked graves means to remember and honor them and others who died and were cast out 50 to 100 years ago by remembering that we must not be invisible. It means that we must remember that we are all part of the same community and to remind others of that right.

It means that we need to also remind ourselves that decisions are made by those who show up. It means that we must teach ourselves that if we truly believe in inclusion and self determination then we must also believe we have the power and responsibility to create change, to protect our friends and families, and to remind the world - and perhaps most importantly ourselves, that a life matters .

Decisions are made by those who show up, who are not invisible, who by their very presence demand to be noticed, to be a part of what happens in their life in every possible way. It means to be respected and to bring down the comforting veil of indifference that divides and separates us from the rest of California and our nation.

If we do that, we will be honoring those who have died in those state hospitals in unmarked graves that an indifferent world wanted to forget and we will be respecting the lives they had lived by "showing up" and insisting that the world respect ours.

Wednesday, December 19, 2007

No more Ransom Notes

Happy news today (via Stephen Drake) from Ari Ne'eman of the Autistic Self Advocacy Network:
I am pleased to inform you that this afternoon the NYU Child Study Center
announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that
announcement here. The thousands of people with disabilities, family members,
professionals and others who have written, called, e-mailed and signed our
petition have been heard. Today is a historic day for the disability community.
Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the
NYU Child Study Center, I have obtained a commitment to pursue real dialogue in
the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.

December 19: Richard Leakey (b. 1944)

I had two legs in the grave, but I wasn't dead.

Kenya-based paleoanthropologist, museum administrator, Kenyan government official, and environmentalist Richard Erskine Frere Leakey turns 63 today. In his twenties, he was diagnosed with terminal kidney disease, and told he had only a decade to live. (He had a kidney transplant in his thirties, with significant immune system complications afterwards, but he's outlived that prediction by thirty years and counting....) As the first chairman of the Kenyan Wildlife Service, he took on the problems of poaching and the ivory trade.

In 1993, he was injured in a plane crash that may have been caused by sabotage (widely suspected, never proven). Since then, he's used two below-the-knee prosthetics, or in some situations a wheelchair. During his term in the Kenyan parliament (1997-1999), he introduced legislation to protect the rights of disabled people in Kenya. He continues his work, as a visiting fellow at SUNY-Stony Brook, and as chairman of Wildlife Direct, which funds conservationist work in Africa and encourages park rangers to publicize their work through blogs and other "on the ground" reporting. He's been a trustee of the National Fund for the Disabled in Kenya (1980-1995) and the National Kidney Foundation of Kenya (1981-1990).

Leakey describes the plane crash and its aftermath, with detailed descriptions of learning how to use a wheelchair and prosthetic legs, returning to his work and activism, encountering social and political disadvantages as a disabled person, etc., in his memoir Wildlife Wars: My Fight to Save Africa's Natural Treasures (with Virginia Morell; St. Martins 2002). Here's Leakey's own blog.

Monday, December 17, 2007

Bits from the Bookshelf

I've been getting books in the mail (yeah!), picking up stuff from library "new books" shelf, borrowing from friends... some snippets from the recent reads:

Lucia Perillo, I've Heard the Vultures Singing (Trinity University Press 2007), a collection of personal essays by a poet; the last paragraph in the chapter "Definition of Terms":
Sometimes I'll be rolling along the streets and a shout will ring from the dampness and the dark--Cripple! This will unhinge me not because the word is offensive but because I realize how visible I am, how I have lost, forever and utterly, the ability to blend in. All my life, isn't this what I aspired toward--being a distinctive someone? And haven't I, like the protagonist of the fairy tale, finally gotten what was once my fervent wish?
Here's a review of Perillo's book by blogger and poet Ron Slate.

Lori Lansens,
The Girls (Little Brown 2005), a novel about conjoined twins, told in their alternating voices:
The strangest thing about strange things is that they're only strange when you hear about them or imagine them or think about them later, but never when you're living with them. (I believe I can speak about that with some authority.) (p 206)
Dave Hingsburger mentioned liking The Girls on Chewing the Fat recently; and Redondowriter also mentioned reading it. There's also an unabridged audio version on CD.

Elizabeth McCracken, The Giant's House
(Dial Press 1996), a novel about "the tallest boy in the world" (based somewhat on the life of Robert Wadlow), narrated by the young man's friend, a librarian:
It isn't that I ever forgot that James was tall. No way to forget, not when everything in the average-sized world conspired to remind both him and others. But I could forget that it was something people would not be prepared for, that the sight of a body like his would cause them to think: but that's not possible. It can't be true. (p 200)
Iain Hutchison, A History of Disability in Nineteenth-Century Scotland (Edwin Mellen Press 2007), a friend's historical study (exactly what the title indicates); from the introduction:
The well-intentioned roles of philanthropists, educators, medical professionals, administrators, clergy, and 'the rest' have been widely documented. But the focus of their attention and possible intervention, people with disabilities, had little voice with which to express how they felt about their lives, their circumstances, their frustrations and their aspirations. Yet people with impairments should be placed centre-stage, and not on the periphery of external intervention, in considering any history of disability. This is what this study endeavours to do. (p vi)
There are more, but as usual I forget to mark interesting passages and afterwards can't quite find them... Diane Setterfield's novel The Thirteenth Tale (Washington Square Press 2007) features a whole family of characters that might be considered mad, or at least very odd, in all the usual ways of a gothic tale that references Jane Eyre, often; Michelle de Kretser's The Hamilton Case (Little Brown 2003) is about the last days of colonial rule and the first years of independence in Sri Lanka; one main character, Maud, is an older woman shut away in a disintegrating home, herself in the process of mental and physical "declines" (which she experiences, against the usual construction, as awakenings, to color, to the natural world, to her own needs and comforts). Nearly all the characters in de Kretser's book are unpleasant, but Maud at least becomes more interesting as she progresses into old age.

Sunday, December 16, 2007

It's the Blue Badge of Christmas, Tiny Tim!

A couple edgier vintage links for the heart of December: What's the Blue Badge of Christmas? Gimpy Mumpy explained this "very special" aspect of the holiday season in 2006. If you're sitting through one too many cloying depiction of Tiny Tim this season, William G. Stothers wrote the perfect perennial essay, "I Hate Tiny Tim." My favorite line: "When you think about a person with a disability as someone to feel sorry for, as someone to be taken care of and looked after, it is difficult to think about hiring them as a teacher, an architect or an accountant."

ADDED LATER: One more: Andrea's excellent disability analysis of "Rudolph the Red-Nosed Reindeer"....Eventually everyone decides to tolerate the mutant reindeer... but only because he can be useful to them...

Saturday, December 15, 2007

Leg splints and mid-century modern design

splint product label"What works is better than what looks good. The 'looks good' can change, but what works, works."

--Ray Eames

I was enjoying the extensive online Library of Congress exhibit, The Work of Charles and Ray Eames: A Legacy of Invention today. The Eameses were important mid-20c. designers, who are best known for plywood, fiberglass and wire-mesh chairs and other furniture, among their many other endeavors. Even if you don't know their name, some element of their work is probably familiar to most Americans.

Why is this relevant to disability studies? Well... during World War II, they were part of a team of designers hired by the US government. (This wasn't unusual; my great-aunt Mimi was a shoe designer during the war; the government needed designs that could be mass-produced within the limits of wartime supplies, thus... canvas shoes.) One of the items Ray and Charles Eames designed was a molded plywood leg splint for the US Navy. Note that the original splints are now prized by collectors, like most Eames designs. The Eameses even featured a sculpture made from their splint on their 1944 Christmas card. The splint label above was designed by Ray Eames.

The technical solutions, materials, and sinuous shapes the Eameses used in the splint project were turned, after the war, to the design of durable, ergonomic, molded plywood furniture. Just one more example--like the audiobook, TV captions, Montessori schools, etc. etc.--where innovations are worked out first for disability-related applications, and only later translated to wider use.

Friday, December 14, 2007

Disability Blog Carnival #28 is up NOW!

[Photo description from Andrea: "Description: a photo of part of my desktop, a faux-oak surface with several items lined up along the back edge, (left to right) a clear green plastic desk lamp; a piece of mirror glass on the desk holding the quartet of a green-swirled globe of art glass from Scotland, a faceted crystal, and a small green beaded keepsake tin, and a purple glass tray with green beach glass from the North sea and pieces of granite from Loch Ness; a green glass bottle; several clear green plastic desk accessories including a stapler, tape dispenser, page holder, a tool caddy with green scissors and pens and suchlike, and in front of these is an electric mug-warmer with an old mug bearing the inscription, “SAVE THE EARTH (IT’S THE ONLY PLANET WITH CHOCOLATE)”. The photo has the post title added in the blank area near the top that reads, “A FEW OF OUR FAVORITE THINGS”."]

Andrea at Andrea's Buzzing About returns to hosting the Carnival with a holiday-appropriate theme, "A Few of Our Favorite Things"--so, for some last-minute shoppers, consider tasty hot dogs; a moped-taxi; a Ted; books, movies, art, TV shows and music with disability themes; photographs of autumn leaves; and the Teen Possibles (no, you can't give them as a gift--but their blog brims with friendship and fun and art and energy, and everyone can use a little of that elixir in the depth of winter, eh?).

Next edition of the Disability Blog Carnival will be hosted by Connie Kuusisto at the [with]TV blog--she set the theme, "Disability in the Media: Tell us of your experiences and/or your impressions." Connie welcomes submissions by email, and you can also use the form, or leave comments here or there, for consideration.

Anyone want to host a spring carnival? I'm now recruiting hosts for March, April, and May. Email me or leave a comment here and we'll work out a schedule. Hosting the Carnival is a commitment of time and energy, but it's also fun, and it helps the rest of us keep track of what's new and interesting out there.

Saturday, December 08, 2007

National Library of Medicine's historical image collection online

A message on H-Sci-Med-Tech pointed me to the National Library of Medicine's History of Medicine image collection online--wow. It's an amazing collection of images from all times and places. Many recent public service posters and program covers, but also much older stuff, like the lithograph I've included at left, titled "Souvenirs of War": it's captioned in French, and from the uniforms I'm assuming early 19c. The caption is in French, and repeats a refrain, "ah, quel plaisir d'etre un soldat!"

[Further image description: All four men visible are using different orthopedic supports--one man in the distance is walking with crutches; another closer to the viewer is also using two crutches, but has his leg hitched up; a third man, in the center of the frame, is using two simple "peg-leg" style lower-limb prosthetics, and a thin cane; the fourth man, on the right, is in a box-like chair with small wooden wheels; he may also have his head/neck wrapped (it's hard to tell).]

Friday, December 07, 2007

Radio interview with Burch & Joyner

Disability history on your iPod--it's a click, drag, and drop away. North Carolina Public Radio aired a nice long half-hour interview today with Susan Burch and Hannah Joyner, authors of Unspeakable: A Life Story of Junius Wilson (UNC Press 2007). It's online here.

Thursday, December 06, 2007

Reports of my death... ah, you know...

According to our sitemeter, someone in the US (AOL doesn't give locations) came to the Disability Studies blog tonight with the search string "Penny L. Richards' death." And stayed for almost 3 minutes, so they weren't just clicking around. I certainly hope they didn't find what they were looking for, with that phrase.

One possible explanation is that there's a romance writer who uses the pen-name "Penny Richards," and there's a Canadian mystery writer, Linda L. Richards, whose most recent book is called "Death was the Other Woman"--maybe the searcher combined the two authors' names by mistake, and was looking for the novel?

It might also be a genealogist or historian looking for a death date or an obituary--I've been known to search names with "obituary" or "died," when looking for a quick confirmation of a date.

Or maybe one of my students is hoping for a last minute reprieve from submitting a course paper? Sorry, they're still due Monday morning.

I figure by posting this, I've recorded the search for posterity, anyway. And now back to our usual programming.)

Wednesday, December 05, 2007

Stop Eugenics video and the HFEB

The HFEB, or Human Fertilisation and Embryology Bill (the full phrase sounds ominous already, doesn't it?) is a piece of legislation before the British parliament that would make it illegal for couples or individuals to choose for an "abnormality." Clause 14 spells it out:
Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—

(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition,

must not be preferred to those that are not known to have such an abnormality.
This would prohibit, say, a Deaf woman from choosing a deaf donor to increase the chances of her child being deaf like her. There are myriad other troubling possibilities. English bloggers Grumpy Old Deafies are all over the case. Today they posted a video made in protest of the HFEB by

Transcript of the title cards, which appear in white against black, between scenes of a line of paper cutout dolls being cut away from the line, one by one, with large scissors:

Nobody's perfect.
Not even you.
Stop Eugenics.
Just stop.

More videos from the same campaign are here.

Monday, December 03, 2007

A new vocabulary

Kay Olson of the Gimp Parade is reaching a much larger readership now, as a permanent addition to the team at Alas, a Blog. And congratulations to the Alas blog owner on such a fine choice! In the comments stream of her first post, the usual question about language came up--is it disablist to say someone you dislike is "psycho," or to call bad ideas "lame" or "idiotic"? Yeah, it is. Sorry. I know, maybe it seemed cool in high school, but "lame" isn't your best choice. And it's stale, too. Here, for future reference, are some words that might be more precisely descriptive, with the bonus of not involving whole groups of perfectly decent disabled people in your disapproval:
Got more? That list didn't take long to come up with, no thesaurus required. The Friday spelling test is optional.

Monday, November 26, 2007

Disability Blog Carnival #27.... ?

As some of you may have noticed, there was supposed to be an edition of the Disability Blog Carnival at Astrid's Journal last Thursday. It's not there, and I've emailed Astrid, but I didn't get any reply--so I'm not sure what happened, or if the edition will post at some future time. I hope Astrid is okay, and I'm sure we'll be in touch eventually and figure it all out.

In the meantime, let me say that the next edition of the Disability Blog Carnival will be hosted at Andrea's Buzzing About, with the theme "A Few of My Favorite Things," on 13 December. You can submit links for consideration at the form, or in comments here, or at Andrea's blog.

And to tide regular readers over until then, I've assembled a quick "snapshot of the weekend" carnival edition: Links and quotes from some of the feeds I read, but only from posts made this past Friday, Saturday, or Sunday, presented together without commentary, as a snapshot of the subjects swirling in the disability blogging community. Yes, I know it was a holiday weekend in the US--so there are many other bloggers out there, who were busy or traveling or couldn't get computer access with the library and office closed--but even with that limitation, there was much to read and think about:

The 19th Floor (Mark Siegel): "Is it me, or does it seem really fucked up to use the same financing scheme for both the purchase of a flat-screen TV and a three-day stay in the hospital for a burst appendix?"

A Deaf Mom Shares Her World (Karen): "Kudos to Potbelly for committing to an accessible design for all their restaurants-- even if it took a lawsuit to make it happen. Now let's see them hire people with disabilities as well!"

Andrea's Buzzing About: "Die-hard patriots will strenuously assert that the US is the 'greatest nation to live in', but the World Health Organization would beg to differ..."

Chewing the Fat (Dave Hingsburger): "Should people with disabilities who do not need a benefit turn it down? Should we have refused the free ticket and paid for Joe's seat?" [Don't miss the long comments thread on this one.]

The Gimp Parade
(Kay Olson): "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..."

Keep Buggering On! (Lorraine Hershon): "This weekend I was having a cup of tea with some casual acquaintances when they suddenly said, Do you mind if we pray for you? Well what can you say to that?"

(Catherine Roy): "...
it seems to me that we should not have to point out, in this day and age, that just because you use a wheelchair, that does not mean you can not think for yourself or how disheartening prejudice or lack of access can be. Don’t people get it by now?"

The Life and Times of Emma: "When the guy from the journey care booking line went 'so that’s a booking for you and your electric wheelchair to travel to Oxford…' as though my powerchair was another person."

Midlife and Treachery: "Sometimes, our lives are just too different to look across that divide of privilege and make any kind of sense."

Miss Crip Chick's Weblog: "We are taught to think disability activism means being that one token young person on every single board and committee in the country."

Pipecleaner Dreams: "...what I thought was only a problem with school is actually a problem with everything. Corey's mind works in ways that are hard to figure out. And it's probably just as frustrating at times for him as it is for me."

Pretty Good Considering (Jothy Newton): "Soldiers in Iraq have required an amputation at twice the rate compared to previous wars."

Reimer Reason (Jodi Reimer): "Kellen had a blast with his cousins. As he has gotten older, they have been playing a bigger role in his life."

Rollingpix (Ralph Raymond): "I was really stoked to get the second interview with Greg Malory after his historic, successful navigation of the Mangde Chu river in the Himalayan Mountain ranges of Tibet."

Screw Bronze (Elizabeth McClung): "See, I am finally starting to get what having an autonomic dysfunction means. It means that things just happen. Indeed, no one really knows for sure WHAT happens or why."

Through Myself and Back Again (lilwatchergirl): "I've had meetings with managers in which I've asked for reasonable adjustments that would cost nothing and bother no one, but because they're a variation on the norm, or mark me out as a different, they've been refused...."

Wheelie Catholic (Ruth Harrigan): "Like car owners, wheelchair users need regulations to ensure we get the products we need and the performance we want."

The Wood Vale Diaries (Heidi): "Now why don't you losers go back to work and instead of perving over my holiday photos, why don't you spend that time doing something useful to improve the sorry state of special educational provision in this borough." [To the Southwark Council member or members who keep visiting her blog]

Autism Vox (Kristina Chew): "As I grew older, I started to see how, for me—a third-generation Chinese American—-what was 'Chinese' and what was 'American' were often intertwined, and that being American could mean a lot more than apple pie and the Mayflower. So 'normal' has always been a flexible category for me... "

[more soon, I'm posting as the post develops, bear with me, my connection cuts in and out, it might take a while]

Wednesday, November 21, 2007

November 22: Joaquín Rodrigo Vidre (1901-1999)

The greatest source of inspiration is hard work. Of course, I also believe in inspiration itself, but sometimes you have to provoke it, call on it repeatedly, even though it may take a while.

--Joaquín Rodrigo
Born on this date in 1901, Spanish pianist and composer Joaquín Rodrigo Vidre (pictured at right, as a young man), in Sagunto, Valencia. He was blind from age three, after surviving diphtheria. Young Joaquín attended a school for blind children in Valencia, where he learned braille. He later studied music in Paris. He first achieved fame at the age of 23, when he won Spain's National Prize for composers.

Rodrigo is best known for his compositions for guitar, including "Concierto de Aranjuez" (1939). Miles Davis adapted part of this concerto for "Sketches of Spain" in 1960. There are YouTube video clips of the concerto being performed more traditionally here and here.

Rodrigo married fellow pianist Victoria Kamhi, and they had a daughter, Cecilia (b. 1941). He held the Manuel de Falla Chair in Music at the University of Madrid. Today, there is a Joaquin Rodrigo International Competition, held every two years in Madrid. The 2008 competition is for piano and violin performances; the 2010 competition will be for guitar and voice.

On November 3 this year, his work (including the Concierto de Aranjuez) was included on the Discoveries radio program, marking the 2007 Festival of Disability Arts and Culture in Philadelphia.

Monday, November 19, 2007

November 19: Gene Tierney (1920-1991)

What did actresses Dorothy Dandridge (1922-1965) and Gene Tierney have in common, besides being considered among the great beauties of their generation? Both November birthdays. Both were directed by Otto Preminger in well-known roles (Carmen Jones, and Laura, respectively). Both women, in 1943, had daughters born with significant developmental disabilities. And both women's later lives were emotionally tumultuous. These latter two facts are often linked in brief biographies, whether or not they should be, just because that's the easy story. In fact, the pressures and temptations and health issues they faced were sure more a part of the general dysfunction of Hollywood life, with or without their daughters' disabilities.

I wonder if they ever knew each other--if they ever knew how much they had in common?

Gene Tierney (1920-1991) described her lifelong experience of bipolar disorder in her 1979 autobiography. She was institutionalized on and off through her thirties--not unlike yet another Hollywood beauty, Frances Farmer (1913-1970), had been a decade earlier. In her autobiography, she declared, "I have been subjected to electric shock treatments that deadened my brain, stole chunks of time from my memory, and left me feeling brutalized....Pieces of my life just disappeared." Tierney married her second husband in 1960, and more or less retired from making movies. She died in 1991, from emphysema (she had begun smoking at the beginning of her career, to lower her voice for film roles).

Public service announcement

Just in case Julia Roberts reads our blog (ha!).

This is (below, left) an Academy Award: ....... and this (below, right) is a parking placard:

They're not interchangeable. Not even in Los Angeles. (Correction: Malibu.)

Any questions?

Sunday, November 18, 2007

November 18: Wilma Mankiller (b. 1945)

Today is the 62nd birthday of Wilma Mankiller (picture at right), the first woman to serve as principal chief of the Cherokee Nation. By the time she took office in 1985, she was also a disabled woman: a serious car accident in 1979 nearly took her leg. She underwent seventeen surgeries to reconstruct it, and says "to this day, I am not sure how I managed to regain mobility." Then in 1980 she was diagnosed with myasthenia gravis, a chronic neuromuscular condition. While she was Chief, she received a kidney transplant, after decades of kidney trouble (she had a second kidney transplant in 1998, the same year she was awarded the Presidential Medal of Freedom). Mankiller resigned from her position in 1995 after a cancer diagnosis. She lives on her ancestral allotment with her husband, not far from her daughters and grandchildren.

Saturday, November 17, 2007

The "Enabling Spaces" Curriculum, and "Access to Admissions"

Last summer I [Mike Dorn] had the pleasure of working with a group of Philadelphia high school students calling themselves Project Beta. They were participating in an afterschool enrichment program calls bITS, funded by the National Science Foundation and hosted by Temple University's Information Technology and Society Research Group. While exploring high end Web 2.0 applications, students were challenged to derive insights from the fields of science, technology and mathematics to solve problems that were familiar to them in their everyday lives. Carol Marfisi and I provided the topical introduction to the themes that students would be exploring during the week-long model, "Towards Enabling Spaces?" Project Beta's explorations of the Temple University campus from the perspective of a person using a wheelchair produced the hilarious film entitled "Access of Admissions," since posted to YouTube and Temple University's site on CampusVid.

I am so impressed by the work of Geography and Urban Studies graduate student Langston Clement and the entire Project Beta team.

I hope you enjoy it, and are inspired to undertake similar explorations of your university campus! Feel free to contact us through the email link to the left, and we will put you in touch with the right people. Of course, you won't be able to duplicate that irresistable Philly soul sound!

Friday, November 16, 2007

Paging Dr. Cliche ...

The television writers are on strike. This is national news, I realize, but it's also local chatter here--I drive past the picket line at Raleigh Studios Manhattan Beach some days, it's only a mile or two from my house. I was talking to a striking writer at a small dinner gathering last night, and an assistant director who's also affected. That's LA for you. But one show's writers probably shouldn't rush back to work--if recent episodes are any indication of their mindset.

Cilla Sluga at Big Noise explained what was wrong about last week's mess on ER: an episode in which a doctor and a young teen decide the kid (who has a terminal illness) shouldn't live any longer, so they lie to the kid's mother about treatment options--and this is presented as a noble gesture on the doctor's part, not as gross malpractice. One character objects, but doesn't go farther than voicing her objection. (And as Sluga further reveals, the episode was written by an ER doctor at Children's Hospital LA--a scary twist to the story.) In this week's episode, William Peace at Bad Cripple catches another doozy: a wheelchair user is the tired "bitter cripple" stereotype, complete with lines like "anger is my baseline" (which would make a fine t-shirt, but as a summary of a disabled character, ugh). One implication of his storyline is that he can't be a good parent because, uh... because he can't clean the gutters. What?

It wasn't always like this: ER has in the past done much better by the disability community. Characters with physical, mental and sensory disabilities have been presented as rounded human beings with full civil rights, at least as well as any other 44-minute network TV drama has done (admittedly, that's a low standard to achieve). One highlight was a 1998 appearance by Neil Marcus, which was about showing disablist assumptions for the dangerous errors they are.... not about confirming those assumptions for viewers.

I hear that this is ER's last season. Maybe that's for the best.

UPDATE 12-7: William Peace notes that the 300th episode (much hyped, aired this week) was also cringe-worthy.

Thursday, November 15, 2007

November 15: Charlotte Mew (1869-1928)

English writer Charlotte Mew was born on this date in 1869, in London. Her sister Freda was institutionalized at age 19, in an asylum on the Isle of Wight, and remained there almost 60 years, until her death in 1958. Their brother Henry also died in a lunatic asylum in 1901, at the age of 35. Charlotte and her other sister Anne believed they might also become mad: "She and her sister had both made up their minds early in life that they would never marry for fear of passing on the mental taint that was in their heredity," wrote a friend. To another friend, Charlotte described her own "queer uncertain mind." Charlotte Mew died by suicide in 1928. This is one of her poems about madness, segregation, and stigma, and the belief that disability was "the incarnate wages of man's sin":
On The Asylum Road

Theirs is the house whose windows---every pane---
Are made of darkly stained or clouded glass:
Sometimes you come upon them in the lane,
The saddest crowd that you will ever pass.

But still we merry town or village folk
Throw to their scattered stare a kindly grin,
And think no shame to stop and crack a joke
With the incarnate wages of man's sin.

None but ourselves in our long gallery we meet,
The moor-hen stepping from her reeds with dainty feet,
The hare-bell bowing on its stem,
Dance not with us; their pulses beat
To fainter music; nor do we to them
Make their life sweet.

The gayest crowd that they will ever pass
Are we to brother-shadows in the lane:
Our windows, too, are clouded glass
To them, yes, every pane!

Wednesday, November 14, 2007

Committed to Parkview

Ever have one of those days, where your projects follow you around? It's a nice day out, so I went for a walk, after a morning of writing disability history encyclopedia entries (on Blind Boone and Anna Klumpke, in case you're curious). But disability history followed me out the door anyway. On my iPod, a recent episode of the podcast Coverville noted Porter Wagoner's recent passing with his rendition of Johnny Cash's "Committed to Parkview"--a striking country song, originally released in 1976, about being institutionalized in Nashville (both Cash and Wagoner had spent time as patients at the Park View facility in the 1960s).

Kay at Gimp Parade sometimes posts videos and song lyrics with disability themes, but I don't think I've seen this one in that series. (It is, however, in this list.) After the video, I'll include the lyrics.

Video Description: Wagoner is singing almost a cappella, with brief, silent, sometimes slow-motion scenes of institutional life interspersed. Wagoner is in some of the scenes.
Committed to Parkview
Johnny Cash

There's a man across the hall who sits staring at the floor
He thinks he's Hank Williams hear him singing through the door
There's a girl in 203, who stops by to visit me
And she talks about her songs and the star that she should be
There's a lot of real fine talent staying in or passing through
And for one thing or another, committed to Parkview

There's a girl in 307, coming down on thorazine
And a superstar's ex-drummer trying to kick benzedrine
There's a real fine country singer who has tried and tried and tried
They just brought him in this morning an attempted suicide
There are those that never made it, those that did but now are through
Some came of their own good choosing, some committed to Parkview

There's a girl who cries above me, loud enough to wake the dead
They don't know what she has taken that has scrambled up her head
There's a boy just below me who's the son of some well-known
He was brought in by his mother 'cause his daddy's always gone
There's a bum from down on Broadway and a few quite well-to-dos
Who have withdrawn from the rat race and committed to Parkview

They wake us about 6:30,just before the morning meal
While they're taking blood pressure, they ask us how we feel
And I always say fantastic there ain't nothing wrong with me
And then they give me my injection and I go right back to sleep
The days are kind of foggy and the nights are dreamy too
But they're taking good care of me, committed to Parkview

Sunday, November 11, 2007

November 11: Kim Peek (b. 1951)

I have so many things in me that you can't even guess them all.

Kim Peek, American "mega-savant" and one of the real-life models for the Raymond Babbit character in Rain Man, turns 56 today (November 11). He seems to have a variety of diagnoses and labels, but he also defies prognoses and assumptions. There's an hour-long documentary about him, available in five parts (uncaptioned) on YouTube. The narrative arc of the film follows Peek and his father on a trip to some medical specialists, so it's pretty focused on his unique neurology. And there are a lot of clips of his public appearances, where Peek's answering trivia questions about dates and baseball. But it still gives a picture of his personality, his history, his relationships (especially with his father), and plenty of direct commentary from Peek, so it's not just talking about him.

Thursday, November 08, 2007

Disability Blog Carnival #26 is up NOW!

Greg at Pitt Rehab collected posts in answer to the subject "how do you relax, unwind?" for the latest edition of the Disability Blog Carnival--if you need some new ideas for enjoying downtime, you'll surely find them among the links this round.

Next edition of the Disability Blog Carnival will be hosted at Astrid's Journal, and the invited theme is "Transitions." Should be plenty of room for interpretation there! Deadline for submissions is Monday, November 19, and the carnival will post the following Thursday, the 22nd. That's Thanksgiving Day in the US, so American readers will have to take a break from football and turkey to come join the carnival. (Yes, I've just given you an excuse to get away from the holiday fuss. You're welcome.) You can submit links for consideration at the form, at Astrid's blog, by email, or here in comments--we'll catch you somehow.

[Logo this time: an old patent drawing of an elaborate torso brace is shown, fine black linework on an off-white background, with the words "the Disability Blog Carnival: a bracing event" superimposed in blue]

Wednesday, November 07, 2007

November 8: Happy 16th Birthday, Aaron Fotheringham!

I don’t think of it as practice, I think of it as a fun way to live my life.

YouTube sensation and extreme wheelchair sports star Aaron Fotheringham is turning 16 this Thursday--somehow. As a mom, I'm just glad to see him wearing his helmet in all his "Hardcore Sitting" videos, like this one from summer 2006, billed as his execution of the world's first wheelchair backflip:

Saturday, November 03, 2007

Virginia Quarterly Review (Fall 2007)

I was browsing the new journals at the Huntington Library today--yes, that's what I do for a special treat on the occasional Saturday afternoon--and hit upon the Virginia Quarterly Review. I usually leave the literary quarterlies on the shelf, but I picked this one up, probably because it had a colorful cover (oooh, shiny). It was a special issue on "South America in the 21st Century," and two of the articles, which are also online, have disability themes:

Julio Villanueva Chang's "Through the Eyes of a Blind Mayor" (pp 15-37) is a profile of Apolinar Salcedo (pictured at left, in ceremonial sash and other signals of his office), the mayor of Cali, Colombia, who lost his sight in a childhood accident. He attended the Cali Institute for Blind and Deaf Children, and became a lawyer before going into city government.

Toño Angulo Daneri's "Aicuña is not an Albino Town" (240-263) is part photoessay, part journalism; the more interesting story isn't about the high rate of albinism in the remote Argentine town of Aicuña, but about the town's response in the face of outside attention to that local trait:
Ever since a Buenos Aires magazine called 7 Dias published a feature story on on Aicuña's albinos in the early eighties, the town's inhabitants have been wary of the press. The story's effect was immediate and, for them, unwelcome. People began to arrive hoping to meet albinos. They wanted to see them, photograph them, find out what they were like and how they looked, to discover what daily life was like in the town they imagined--one filled almost entirely by people with white hair and translucent skin... Ever since then the town has been protective of the albinos who live there, and evasive, even surly, towards outsiders.
Neither of these stories is written with explicit reference to disability culture or politics (and the latter author admits that he's asking exactly the prying questions that the townspeople detest), but they're well-written and worth checking out.

Sunday, October 28, 2007

Kids and disability culture

[Image description: A three-story dollhouse, with an elevator running through the center of the design.]
Kids want and enjoy toys that reflect their own experiences--and for more and more kids today, their experiences include disability, whether first-hand or in their family, friends, neighborhoods, and classrooms. Bint Alshamsa recently blogged about the dearth of appropriate toys, riffing from the "Trache-ing Elmo" post at Kintropy in Action.

Which was all on my mind when I read this paragraph about the Green Dollhouse Project, a design competition held by the Coyote Point Museum for Environmental Education in San Mateo County, earlier this year:
During all the negotiations, the children kept gravitating to what we call the Elevator House (but which is officially called Rosaceae Sustainus) to play. So, we had an inkling of which one should win the Kids' Choice Award. The children particularly loved the hand-cranked elevator in the middle of the house. This house was open, making the spaces easily accessible, and it also included a grey water system with shell sinks.
So an open, accessible dollhouse with an elevator was a clear winner with the kids--even while the adults preferred other models. (UPDATE: The Elevator House entry was designed by a Portland OR firm, WGS.)

Now, dollhouses and other toys have had elevators for a while; but the Barbie dollhouses I've seen online have elevators for a single standing doll only--her friend Becky couldn't use them (nor any of the doors in Barbie's dream house). The old Playskool parking garage had an external elevator for cars--so that was big enough for the little wooden dolls to use in multiples, and if they had a Playskool wheelchair it would probably work fine in that elevator too--but it'll only take you to the roof of the parking garage, hmmm...

If you shop for holiday gifts for children this season, notice what's available to promote a sense of inclusion; and what reflects the everyday diversity kids know and accept already. Why shouldn't we try to find toys that support and encourage that?

Thursday, October 25, 2007

Embellished cast

Found this on the blog of artist Aileen Roberts, it's what she did for her sister's cast:We should all have such cool sisters! (Go see it at Aileen's blog to catch the other side of the design.) Reminds me of the bling kit Sara's true love gave her, to decorate her leg. Or my own son's Christmas stockings. Kinda gives holiday decorating a whole new dimension, eh?

Disability Blog Carnival #25 is up NOW!

Kara Sheridan starts us into the second year of the Disability Blog Carnival with a fine edition built around the simple prompt "If..." IF you go have a peek, you'll find plenty of wistfulness and wondering, counterfactuals and contingencies, dreams and visions... and an autumnal handcycle tour that's not at all imaginary, and gorgeous to join, if only in a virtual sense. Go, find poetry, art, video, dogs, young folks, old folks, and a lot of terrific writing too.

Next edition will be hosted by Greg at Pitt Rehab, who asks, "How do you relax, unwind?" The deadline for submissions is November 5, so start relaxing now; it's important to fully research your subject before writing, isn't it? Watch for the Carnival to post on November 8, unless the Boston Red Sox win the World Series the week before--in which case Greg might need a few extra days to accommodate his celebrations. You can submit links for consideration by leaving a comment here, or with Greg, or using the form. As always, huge thanks to the hosts and other participants for making this carnival a vibrant and active part of the disability blogging community.

Wednesday, October 24, 2007

Where There's Smoke

Although the name of the blog is Disability Studies, Temple U., and Temple U. is in Philadelphia, you can learn from the sidebar that I'm not--I'm in Southern California. Redondo Beach is nowhere near any of the wildfires in the news, and we're not in any danger of evacuation or road closings here. But...

We're seeing ashfall. It's not Pompeii after the eruption of Vesuvius, but cars parked outside get a fine dusting. And if you look closely, there are ash particles floating around in the air everywhere. That means there must also be smaller-than-visible particles in every breath. Our Air Quality Index on the coast today is at U--U for "unhealthy." (There are actually two worse designations: V, for "very unhealthy," and H, for "hazardous.") Schools are advised to cancel outdoor physical activities. People are rubbing their eyes on every corner. Throats burn, and we're all coughing a lot. I'm keeping my little-used inhaler handy.

For most folks, it's a minor, temporary problem, and they're grateful that's all we're getting here. But for people with existing heart, lung, or other health conditions; for people whose jobs have them working outdoors all day; and for older people and little kids, this can be a serious, even life-threatening matter. So when you see the satellite images of the smoke plumes, or hear about how many square miles are burned, remember that a much wider area is affected by these events in less dramatic ways (no good television footage to gain from asthmatic gasping, or kids sitting indoors instead of having recess). And disabled people are often feeling it more than most.