Monday, December 31, 2007

Eye-yi-yi...

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

REMEMBERING THE PAST: A LESSON IN ADVOCACY
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 blogcarnival.com 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 stopeugenics.org:





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.
Nobody.
Not even you.
Stop Eugenics.
Just stop.
stopeugenics.org

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:
ill-conceived
ill-considered
ill-informed
misguided
narrow
nonsensical
inconsistent
random
scatter-shot
ridiculous
stale
silly
dangerous
off-base
pathetic
disappointing
frustrating
confusing
infuriating
unconvincing
unwise
heedless
reckless
Got more? That list didn't take long to come up with, no thesaurus required. The Friday spelling test is optional.