Monday, October 29, 2007

FRIDA feminist-disability links #10

Rejecting Target Corporation's motion to dismiss a group of plaintiffs' lawsuit for a lack of a cognizable claim under the Americans with Disabilities Act of 1990 (ADA), a federal district court in California certified a nationwide class action on behalf of individuals in the United States who are legally blind who have attempted to access Target.com and as a result have been denied access to the enjoyment of goods and services offered in Target stores. Full story here.

It is reported in this article that a Scottish nurse who "didn't like old people" murdered four elderly people by injecting them with lethal doses of insulin, and that he even predicted the time that one woman would die, even though the woman's collegues believed she was comfortable after hip surgery.

In her forthcoming photographic exhibition in Toronto, title "Access Sex," Vancouver artist Kyla Harris, who is paralyzed from her neck down, explores the theme of sexuality and disability. Read a review here.

A Salina senior with a disability lobbies for new perspective. Read a conversation with her here.

From the Sydney Morning Herald, a story about the formation of a new political party, the Carers' Alliance, who will context the next Australian federal election. Their goal is to give the carers of people with disabilities a more prominent position in the political landscape.

In this article, Molly Knoedler, who has Tourette's Syndrome, shares her experience.

Calling the conditions at the West Englewood school for students with learning disabilities a disgrace, parents and students have called on the Chicago Board of Education to relieve overcrowding. Full story here.

International Symposium on Euthanasia and Assisted Suicide, Friday November 30, and Saturday December 1, 2007, at the Four Points Sheraton, Toronto Airport Hotel. For more information, and to register, click here.

Thursday, October 25, 2007

Georgia Deaf-Blind Woman Starved to Death

In Georgia, a couple have been charged with involuntary manslaughter of a woman who was blind and deaf. The woman had been starved and weighed 46 pounds at the time of her death. The home literally was buried in poop. The story can be found at http://www.nbcaugusta.com/news/local/georgia/10754876.html. The video is literally stomach-churning.

The question here is: WHY were these people living like this???? Did they ever work with community services or agencies? Is it possible the perpetrators had disabilities themselves? What the hell was going on??? We who work in community services to empower people with disabilities know that we aren't actually able to reach everyone, but my god!! Does anyone know folks who work in the Augusta area? Why didn't the neighbors push harder to get someone to investigate?

This makes me think of something else. Here in Chicago, we have a serious lack of buildings with central air conditioning. So during the summer when it's really hot and humid, we are encouarged to check on our neighbors to make sure they aren't getting baked to death, which really happens. In a world where the word "community" really means something, we'd be valuing people and making sure people are living the best lives possible.

Wednesday, October 24, 2007

Woman with Alleged Disability Kidnapped, Raped, Tortured

Woman Wants Accused Torturers to 'Fry'
By SHAYA TAYEFE MOHAJER,
AP
Posted: 2007-10-24 14:00:13

CHARLESTON, W.Va. (Oct. 23) - Megan Williams thought she was going to a party.That is why she tagged along with a woman she says she hardly knew, up a remote West Virginia hollow to a run-down trailer surrounded by beer cans and broken-down furniture.

Megan Williams said she went to a mobile home in Big Creek, W.Va., for what she thought was a party. Instead, authorities said, she became the victim in a horrific kidnapping, rape and torture case.
"But there wasn't no party," Williams told the Associated Press in one of her first public interviews since the arrest of six people now accused of becoming her captors. "I realized I'd made a bad mistake."

For days, the 20-year-old black woman was allegedly tortured, beaten, forced to eat feces - rat, dog and human - and raped by six white men and women who held her until Sept. 8.

A passer-by heard cries from the shed where she had been kept, and Logan County sheriff's deputies found her hours later.

Seated in a rocking chair in her mother's living room, about 50 miles from that shed, the slight woman says she was outnumbered by people who just wanted to hurt a black person.

"They just kept saying 'This is what we do to niggers down here'," she recalls."I just hope they fry for what they did to me. That's really all I got to say," she says when asked what should become of her captors.

West Virginia does not have a state death penalty, but the six could spend the rest of their lives in prison if convicted of rape and kidnapping charges. Kidnapping carries a possible life sentence in West Virginia. Sexual assault is a crime punishable by up to 35 years in prison.

Williams and her family want the torture prosecuted as a hate crime, but no such charges have been filed by state or federal prosecutors. In West Virginia, a hate crime carries only a 10-year maximum penalty.

Prosecutors also say hate crime charges could complicate their case. Hate crimes are typically prosecuted in situations involving strangers, they say, and Williams knew one of the suspects before her captivity.

Megan's adoptive mother, Carmen Williams, says her daughter was trusting."She's a little slow, so it's kinda hard for her to comprehend sometimes," she said. "So I think that played a big part in it."

Carmen Williams will not disclose Megan's IQ but says she is "not at full capacity."

For the rest of this story please go to:
http://news.aol.com/story/nc/_a/woman-wants-accused-torturers-to-fry/20071024090409990001?ncid=NWS00010000000001

Tuesday, October 23, 2007

"Selective Parenting" Discussed at Bioethics Forum

A particularly sticky and contentious issue for feminists with disabilities is the idea of "selective abortion," sometimes referred to as "selective parenting," as in the article at the link below.

http://www.bioethicsforum.org/selective-abortion-disability-parental-choice-Dreger.asp

This article is basically academic folks trying to argue out lines of reasoning...but there are some significant points, such as the actual discussion of a social model and social context for disability, and an understanding of systemic social oppression and the role of moms. In addition, WHO the authors are is worth noting. Alice Dreger is a well-known scholar who is best known for her work on intersex issues. Joe Stramondo is a PhD student studying ethics and medicine...who also happens to be a little person (and a feminist). In my own opinion, I think it is of significance to our movement to have people with disabilities actually pushing the academic envelope and becoming allies with people whose work involves groups with issues related to ours, such as intersex.

And I naturally have to be a pain in the neck and ask...what do the academics have to do with our movement, anyway? It's not like a lot of you out there haven't thought about this. ;) While there are a lot of answers/arguments about this, from my own time being hooked into academia and also from spending time with people who devote themselves to scholarly work, I think scholars can help us frame what we want to say (or not) a lot better. Ideas reverberate.

So...is Alice and Joe's article something ya feminists out there agree with, or not? Whatcha think? We FRIDA folks REALLY want to know what you think of this topic.

Saturday, October 20, 2007

Melbourne Abusers' Parents Blame Victim with Disability in "C--- The Movie"

Last year, a group of boys in Melbourne, Australia, made a movie that combined some of the worst aspects of human behavior: rape, humiliation, exploitation, mortal danger. They called this "C--- The Movie" and sold it on the streets. The police found it and the story erupted into a huge scandal in Australia. One of their victims? A teenage girl with a developmental disability. For the full story, check out Wikipedia at http://en.wikipedia.org/wiki/2006_Melbourne_teenage_DVD_controversy.

But to pile injustice on injustice, Linda of FRIDA found a story that claims the parents of one of the boys believes the girl was partly to blame for what happened to her. See http://www.theage.com.au/articles/2007/10/18/1192300954570.html.

The entire story makes me want to throw up.

It makes me want to vomit not only because it happened that one time in Australia, but because stuff like this happens every day, all over the world. A boy with autism is beaten by his classmates. A girl with a cognitive disability is mocked and her clothes stolen in a locker room. People are raped and pimped and mutilated. People are taught to mimic the behaviors of their abusers. It happens in my city. It happens in yours.

Friday, October 19, 2007

Point of view: Why Katie Thorpe should not have a hysterectomy.

A notable aspect about many media reports and blog posts about Katie Thorpe has been their expression of contempt for, and dissociation from, Katie's mother, Alison Thorpe. One consequence of this has been the construction of a binary opposition between bad mothers and good mothers, between Alison Thorpe and the rest of us, and between Alison and her daughter, Katie. One notable feature of the following article, however, which is written by Kate Ansell, who like Katie, also has CP, is not only its abundance of empathy with, and support for, preserving the bodily integrity of Katie Thorpe, but also its absence of contempt and loathing for Alison Thorpe. Instead of loathing, contempt and disassociation, which is expressed in blogs as "I'm not like that," and "I wouldn't do that," Ansell reaches out by sharing knowledge based on her experience of CP, and offering suggestions for alternatives. One outcome of this approach is that it opens up the issue of the removal of Katie's womb for more contemplation and discussion rather than closing it down.

Readers thoughts and comments about the vilification of Alison Thorpe and her representation as the bad mother would be appreciated. For example, is it useful? Is it productive? If so, how? Whom is served by her vilification? Does it diminish feminism to posit women against women? Are criticism and compassion mutually exclusive? How might we argue/campaign/protest the removal of Katie's womb without isolating and ostracizing her mother, Alison? Whom should our protest be aimed at?

The full text of Ansell's article, which argues that although it might be the case that Katie's periods will be difficult, it is also possible that they won't be, and that its best to wait and see how they affect her, can be read here.

Thursday, October 18, 2007

Urge Presidential Candidates to Participate in Disability Forum

An important Action Alert to respond to.

Senator Hillary Clinton and Mayor Rudy Giuliani are front runners for their parties in the Presidential race, yet, BOTH of them have declined to attend and participate in the Disability presidential Forum which will be taking place in New Hampshire on November 2nd. Tell them don't Ignore Our Community! Urge Presidential Candidates to Participate in Disability Forum.

Copy and paste this link into your browser

http://capwiz.com/rochestercdr/state/main/?state=NY

Then, click on the Take Action button for each of them. You may send the sample letter, or personalize it. Afterwards, delete any information that may already be there, and add your own, then, click Send. This Action Alert is open to EVERYONE, not just people from New York, so please respond!

ACCESSIBLE FORMATS

If your speech reader cannot navigate the CDR advocacy website, send an email to bradw@nysilc.org in order to obtain text versions of the letters along with forwarding faxes and email addresses. Ideally, it is best to use the CDR website whenever possible because the system is preprogrammed to forward the letters to the correct fax numbers and email addresses automatically.

Monday, October 15, 2007

Frida feminist-disability links #8 and #9

A nurse from Bolingbrook, Chicago, has been sentenced to 24 months of probation after pleading guilty to one count of criminal neglect of a 5-year-old girl with cerebral palsy and scoliosis. Full story here.

A London nightclub's decision to turn away a girl with disabilities who uses crutches has been called "absolutely ludicrous" by the Disability Rights Commission in the UK. The young woman, who has a bone disease, said she felt "angry and humilated" after she was refused entry on the grounds her cruthces could be "potential offensive weapons." Full story here.

A Family Dollar clerk in Fort Worth, Texas, was charged with aggravated assault with a deadly weapon after he used a crowbar to beat a deaf customer. The thirty-year old man, who has been deaf since the age of 2 and uses sign language to communicate, was hit on his head with a crowbar when he tried to pay for some softdrinks. The clerk, it is said, hit the man because he thought he was being rude by not talking to him. Full story here.

A disturbing story from the Associated Press about a group of students at a Washington high school for the deaf that scrawled KKK and swastikas on a black student's body with a marker while holding him against this will. District of Columbia police are investigating the attack by seven students - six white and one black - as a possible hate crime. Full story here.

Via the LA Times comes the news that Mary Ann Jones, advocate for people with disabilties, died on September 23. She was 63. Jones, who was executive director of the Westside Center for Independent Living in Los Angeles, and who devoted the last three decades to working on behalf of people with disabilities, was a quadriplegic since she was 23. Among the many honors Jones received for her work were a Los Angeles Country Commission on Disability Access Award and Pioneer Women Award from the Los Angeles City Commission on the Status of Women. She is remembered by Aliza Barzilay, interim executive director of the Westside Center, as a "committed, hard-working yet gracious leader who dedicated her life to furthering the cause of disability rights."

According to this report in USA Today, women are far less likely to receive implantable heart defibrillators than men, and African Americans are less likely to receive them than white patients. The news studies are among the first to show underuse and disparities in the use of implantable defibrillators, which can save people at risk of sudden cardiac death.

A 52-year old woman was struck by a train and seriously injured after the back wheels of her electric wheelchair got stuck on the yellow studded area of a New York Penn Station subway platform. According to this article, the woman was initially listed in serious condition with head injuries and fractures to her face and legs. For feminist-disability analyses of the issues at stake in the incident see here and here.

Saturday, October 13, 2007

At Last, the Book on Junius Wilson

You can order it from Amazon here:
http://www.amazon.com/Unspeakable-Story-Junius-Wilson-Caravan/dp/0807831557

Many folks who read this blog know who Junius Wilson was, but for those who don't, folks, the Gimp Parade blogged about him last year at: http://thegimpparade.blogspot.com/2006/10/i-cant-get-junius-wilson-out-of-my.html.

The story of Junius Wilson, who was not only incarcerated in an institution for decades but castrated as well, is an important reminder that in our fight to maintain bodily integrity, we are not only talking about the bodies of girls, but the bodies of all people, of all colors.

It is a violation of your human rights to remove/alter your body parts without your direct consent and when medically unnecessary. Perhaps there are exceptions to the rule, you might ask? My response is: there are no exceptions. Only barriers. We've got to figure out how to get those social barriers down. Attitudes, supports, funding, whatever it takes.

While the cases of young girls with disabilities have caught much media attention this year, the fact is that gynecological mutilation is visited upon, has been visited upon, uncounted numbers of people through history without their consent. Our people. People are more important than systems, right? Systems should serve the people...people shouldn't be slaves to the systems!

The story of Junius Wilson also serves as a reminder that the history of the Deaf community and the history of disabled people share important connections. Why is it that so much of our suffering comes out of the fact that people don't understand us or don't listen to what we say?

Vive la differance. Down with ableism!

Friday, October 12, 2007

Australians Condemn Medically Unnecessary Sterilization

9 October 2007

For immediate release

STERILISATION OF CHILDREN WITH DISABILITY AN OUTRAGE

Two Australian disability advocacy and human rights organisations are outraged by moves by a UK mother to have her 15 year old daughter sterilised to prevent her from menstruating.
The mother’s decision, reported in today’s Sydney Morning Herald has received support from her local hospital even though it is recognised that the hysterectomy procedure is not medically necessary.

Mr Robert Farley, President of People with Disability Australia (PWD) said that “sterilisation of children for no medical reason is a procedure that no child, parent, medical practitioner or court of law can give consent to”.

“If this was a child without disability there would be community outrage at this human rights abuse”, Mr Farley said. “Why are children with disability considered to have lesser or no rights compared to other children?”

Ms Annie Parkinson, President of Women with Disabilities Australia (WWDA) pointed out that “sterilisation procedures are often sought for girls with disability as way of preventing menstruation and pregnancy, rather than addressing medical concerns or emergencies”
“Sterilisation, if performed without medical need, is a gross violation of human rights”, Ms Parkinson stated. “Grave health risks such as early onset menopause, osteoporosis and cardio-vascular disease can result from sterilisation of girls before they begin to menstruate, or in early puberty”.

Ms Parkinson went on to say that there were many personal stories told by women with disability who were sterilised without medical need as girls, many considered incapable of providing informed consent. As adults, they have understood fully what sterilisation means, and many have developed serious physical and psychological health conditions and face lifelong negative consequences in developing and maintaining general wellbeing.

PWD and WWDA pointed out that sterilisation of people with disability without medical need is prohibited by the United Nations Convention on the Rights of People with Disabilities which was agreed to internationally in December 2006. It also goes against the United Nations Convention on the Rights of the Child.

They argue that children with disability and their families need to receive flexible and responsive support services to assist them to manage menstruation, pregnancy and reproductive issues. These supports do exist and have been shown to work effectively, but more effort needs to be made to ensure that families know about them and are able to access them.

Ends

For more information, contact:

Therese Sands Carolyn Frohmader
Co-Chief Executive Officer Executive Director
People with Disability Australia Women with Disabilities Australia (WWDA)

Ph 02 9370 3100 Ph 03 6244 8288
Mobile 0412 935 128 Mobile 0438 535 123
Email: tsands@pwd.org.au Email: wwda@wwda.org.au

Thursday, October 11, 2007

Independent Means

A heartening counterpoint to this week's news about plans to remove the womb of Katie Holmes comes from the New York Times in an essay by Jane Bernstein about her daughter, Rachel, who has developmental disabilities and lives in a "community-living arrangement" with two roommates and 24-hour care. Here is an excerpt:

"My daughter Rachel, who is developmentally disabled, lives in a "community-living arrangement" with two roommates and a 24-hour staff. It's only an hour from my house in Pittsburgh, so I stop by about once a week. Rachel, 24, calls me a dozen times a night, but she's unenthusiastic about my visits. My feelings aren't hurt. Even though two years have passed since her move, it's still thrilling to see her happy and relaxed in her town-house apartment. And her roommate Lee Ann loves to see me."

"Often it's hard to know what Rachel thinks or comprehends because woven through her abundant conversation are other people's expressions, gripes and desires. But since adolescence she was very clear about wanting to move out of the house. When asked where she wanted to live, she'd point at me and say, 'Far away from her.' In her 2002 yearbook, students were asked to name their fondest wish. One classmate wanted to walk unassisted; one wanted to to be a rap artist; Rachel wished 'for an apartment all my own.'"

"I run my fingers through her curls, still yearing to feel that she really loves me. But this is enough. It's more than enough to see her in this life that makes sense. This is what happy look like. This is her life."

The full text of Bernstein's essay can be read here. It is titled "Independent Means," and adapted from her new memoir, "Rachel in the World," which will be published this month." Bernstein also wrote about Rachel for the New York Times magazine in 1994.

Tuesday, October 09, 2007

Americans With Disabilities Affirm Katie Thorpe’s Right to Bodily Integrity

For Immediate Release:
October 9, 2007
For Information Contact:
Sharon Lamp (847) 803-3258; (847) 894-4907 cell
Amber Smock: Ambity(a)aol.com

(Chicago) The American disability rights groups Feminist Response in Disability Activism (FRIDA), with the support of Not Dead Yet, today joins United Kingdom disability groups such as Scope in protesting the planned hysterectomy on 15-year-old Katie Thorpe, who has cerebral palsy. Her mother, Alison Thorpe, wants doctors to remove Katie's uterus to help her avoid the pain, “inconvenience,” and "indignity" of menstruation.

The clinical director for gynecology, Phil Robarts, is seeking legal approval from the UK hospital system NHS to go forward with the procedure. In the United Kingdom, such a procedure without the consent of the party involved is considered assault, so legal approval would be a first. The surgery is not medically necessary and would be painful and traumatic.

This case is reminiscent of the internationally publicized case of Ashley X, whose parents not only subjected her to a hysterectomy but also breast bud removal and growth attenuation therapy. In such cases, the parents believe that "normal" bodily maturation processes will impair their child’s quality of life. However, these cases tend to involve children and adolescents with disabilities who cannot – or are not allowed to - speak for themselves. Surgical intervention, such as hysterectomy, is not required to save the life of the child involved.

Sarah Triano of FRIDA points out, "Is this something we would allow any other 15 year old without a disability to even contemplate? Why is it different just because Katie has a disability? It's discrimination - plain and simple." Fellow FRIDA member Barb Bechdol muses, "This Draconian procedure implies that a person with severe disabilities is a permanent vegetable. My life wouldn't have included the richness of education or marriage, if this sort of intervention had been foisted on me. Shame on them!"

Instead, FRIDA feels the core of the problem lies not only in the blatant sexism involved, but in the lack of community supports for families of children with severe disabilities. With only one or two parental caregivers, these families face enormous unrelieved stress without any recourse to professional, well-paid respite care. Cases such as Katie's continue to demonstrate that society must change to include the individual with a disability. Surgical intervention is not the answer.

International advocates for disability rights have long advocated for the right of disabled people to bodily integrity. The UN Convention on the Rights of People with Disabilities, which took two years to shape, specifically states that bodily integrity is a human right.

Furthermore, FRIDA believes that removing Katie’s womb to avoid the “indignity” and “inconvenience” of menstruation is a value judgment that should carry no weight. We do not subscribe to the viewpoint that Katie does not need her womb because she will not have babies. This is a sexist expectation that opens the door for violation of not only Katie’s but other girls with disabilities’ bodies.

###

Monday, October 08, 2007

What Can We Do About the Katie Thorpe Case?

Hi folks, this post is in response to a reader who wants to know what they can do about the Katie Thorpe case. First, just FYI, the case is generating a lot of news coverage over in the UK and disability rights organizations ARE making their views known. That's great! As for us over here, if you want to make a difference, some people to contact might be:

Mr Phil Robarts, Clinical Director, Obstetrics & Gynaecology. He is the one seeking legal approval to perform the hysterectomy. You can reach him via his secretary's e-mail at:
patricia.bell(at)meht.nhs.uk or patricia.stimson(at)meht.nhs.uk.

Mr David Nicholson CBE, Chief Executive, NHS. You can give this guy a shot. He's in charge of the NHS hospital system. His e-mail is: David.nicholson(at)dh.gsi.gov.uk.

Lord Hunt, Minister for Health and Safety. If you want to let the government-level folks know where you stand on this issue, e-mail Lord Hunt at ministers(at)dwp.gsi.gov.uk.

A suggestion, though you can certainly write what you want: argue your position as clearly and reasonably as possible, and note any personal experiences you may have that informs your point of view.

You may also contact Scope, which in the UK represents the interests of people with cerebral palsy. Their website is www.scope.org.uk and the contact person you can reach to express your support is Suzanne Stevenson, suzanne.stevenson(at)scope.org.uk.

Good luck! If you can, let us know what sort of response you get.
Crip Youth Get Love n Sex in the United Kingdom

We got a heads up on this article from the ever-terrific Gary Arnold. Definitely worth your reading time.

A pioneering policy is breaking an old taboo by encouraging disabled teenagers to form sexual relationships, with help from carers if necessary

Anushka Asthana, education correspondent
Sunday October 7, 2007
The Observer

For the complete story go to: http://observer.guardian.co.uk/uk_news/story/0,,2185322,00.html

Meet Tyran and Leanne - they learnt of love and sex in a school for the disabled

Observer Jan Symes remembered every detail of the scene. A 17-year-old girl with straight brown hair pulled back into a ponytail, heavy purple boots and clothes ill-suited for her age sat opposite her in a small office at Treloar's College, nearAlton in Hampshire.

The teenager had cerebral palsy and was sitting in a wheelchair, using a machine to speak. Shelifted her head, looked across at Jan and asked: 'Do you think it is all right for me, as a very disabled person, to fancy someone?' Symes was horrified. 'Will society think it is disgusting?' the girl went on.

Today the college for physically disabled teenagers over 16 goes public about a ground-breaking 'sexuality policy' that began to take shape that day two years ago, when a young woman shocked her counsellor by asking whether she had the right to fall in love.

A policy was designed that aimed to break down one of society's most enduring taboos: that of disability and sex. And now, for the first time, staff are ready to speak out about the controversy, legal wrangling and heated debates involved in producing a three-page document that fundamentally changed the ethos of the college. Students, it stated, not only had the right to pursue sexual relationships, but would be assisted physically and emotionally by specially trained staff.

Now other colleges for the disabled are looking to make a similar change. Like Treloar's, they have young people whose disabilities are so severe that even to hold hands, cuddle or kiss is impossible without help.

Again, complete story is at: http://observer.guardian.co.uk/uk_news/story/0,,2185322,00.html.

Sunday, October 07, 2007

Katie Thorpe's Womb to Be Removed By Parents

Thanks to our ever watchful Linda from Rochester, NY, we have learned that doctors are consulting with lawyers to get approval to remove the womb of 15-year-old Katie Thorpe, who has severe cerebral palsy. This case is apparently a first in the UK. The story is here:

http://www.timesonline.co.uk/tol/news/uk/health/article2604771.ece

In essence, Katie's mother and mother's partner are her primary caregivers and to protect Katie from the "indignity" of having a period, Katie's mom wants her daughter to have a hysterectomy. Katie is not judged able to communicate for herself. Hmm, doesn't this sound familiar? Where have we heard this before?

The language in the article is highly bothersome for activists who have worked for many years to make families aware of and able to utilize community supports for people with disabilities. Having bladder and bowel issues, undignified? Well, that's pretty much a human thing....but I guess when you're only one of two people cleaning up someone else, and you aren't being paid for it, yeah, it can suck. It might not be as stressful if there were people providing in-home service to help! Where are the in-home services for Katie Thorpe?

Beyond in-home supports, the cases of Ashley X and Katie Thorpe expose problems in our social expectations of families. We expect families to take care of their own, and we expect that at some point, kids are able to get out of the nest. However this assumes a lot of responsibility for independence on the part of the child. When a child needs a lot of dependent support, especially the 24/7 kind, the mold goes haywire. Families in this kind of situation NEED HELP. They NEED OPTIONS. But options are not really there, particularly in cases where the child is maturing physically into an adult and will not be covered by supports offered through public education. So people feel that solutions like hysterectomies make a lot of sense. Families say, "If you were in our situation, you'd do this too!" In effect, who are the rest of us to judge?

For a historical perspective, let's go back to 1962. I am thinking of Arthur and Daniel Miller. Arthur Miller's wife Inge Morath gave birth to Daniel that year. Turns out Daniel had Down syndrome. So Arthur had the baby sent to an institution, where he lived out his life. As far as we know Arthur never saw his son. Why did he do this? From social attitudes at the time, we can make a good guess that maybe he was ashamed, and that difference was disturbing. In those days Danny Miller would have been labeled a "mongoloid" and "retarded." Arthur Miller was freaking brilliant and had a reputation to preserve. So this is how people edit their lives.

And yet in the decades since, disabled people and families have seen a sea change. Geraldo exposed Willowbrook. Laws protect the rights of children and adults with disabilities. Forced sterilization was outed as a human rights violation. Elaine Wilson and Lois Curtis got the U.S. Supreme Court to recognize that unwanted, unnecessary institutionalization was illegal. Families saw that including and caring for disabled kids at home was possible and enriching. We are on a path towards embracing biodiversity, neurodiversity, all the children that are born to us.

The problem is, we are in mid-step on that path. Families who were the first to care for disabled people at home are aging out and dying, leaving our people with no one. Many are fighting hard to keep people with disabilities in institutions because there are no current community support systems that they trust. Young adults who were part of the first wave of children to have access to least restricted environments are finding that, after high school, supports are gone and we don't know how to advocate for ourselves. And the young people who have no way to communicate (that anyone can figure out) are stuck at the mercy of social systems and expectations that can't meet their needs. These are the folks at the absolute vortex of the disability rights movement discussion, the absolute tip of the wedge. If their rights can be violated, so can the rights of us all.

We are all stuck in this together, and we cannot forget it. If girls like Katie and Ashley are considered never to be really girls or women, then women with disabilities everywhere need to resist, both because those girls are our sisters and because it only takes a few to make change for many, both good and bad.

Katie Thorpe's womb hasn't been removed YET. There is some small window here to raise the issue of community supports, to try to ensure that that is considered as a viable option. Can you help spread the word, FRIDA Fighters?

Thursday, October 04, 2007

Tell The Candidates Disability Matters!!

via the American Association of People with Disabilities (AAPD)

TAKE ACTION!

Contact the candidates' campaigns. Tell them that knowing where the candidates stand on disability rights is important to you. Ask them to have the candidates respond to the ADAPT / AAPD / NCIL/ SABE list of questions that was sent to them earlier this year and to send responses electronically to Anne Sommers at mailto:ataapdanne@earthlink.net

Also urge them to attend the presidential candidate disability forum happening in New Hampshire on November 2. Tell them thecandidates received invitations already and Senator Dodd has already confirmed. If they say they have not yet received any of the information you reference, offer to provide them with a copy of the cover letter and the questions, and be prepared to fax, email, or hard copymail it to them. You can find a list of candidates, the cover letter, the list ofquestions, and information about the disability forum at:http://www.aapd.com/News/election/peac2008.php

If they need more information about the New Hampshire event, ask them to contact Anne Sommers at AAPD at (202) 457-0046 or by email: aapdanne@earthlink.net

SOURCE: AAPD

Monday, October 01, 2007

Frida feminist/disability links #7

In the news and the blogs this week:

In this article titled "Physician-assisted suicide symptom of broken system," disability rights activist Joelle Brouner argues that physician-assisted suicide is less about choice or pain management than power. Also, you can read a commentary on the article by Stephen Drake (Not Dead Yet) here.

Laurel Burch, artist, designer and businesswoman, died on Sept. 13, at the age of 61 from complications of osteopetrosis, a painful disease she had her entire life. A woman with disabilities who lived in pain, Burch said her goal was to pass on joy. In Burch's last years, her disability worsened, and she learned to paint left-handed after breaking her right arm in 2005. Still, she is reported as saying, if she had to choose between good health and her artistic gifts, she would choose her art - "in a second, in a heartbeat." To read more about Burch's life and her art, go here.

In this article in the Journal of Genetic Counseling, titled "What I Wish I Knew Then ... Reflections from Personal Experiences in Counseling about Down Syndrome," Campbell Brasington reflects upon her experiences in counseling about Down syndrome, and how her thinking has changed from a medical model of disability to a more family-focused model. After many conversations with families, she says has come to understand that "children with Down syndrome are more like other children that different," and that "families do and can thrive with a child with Down syndrome."

Read here for David Briggs review of, and recommendation to go see, the exhibit "Deadly Medicine: Creating the Master Race," which traces the rise of the eugenics movement in the early 20th century to its "horrific expression in the genocide committed by Nazi Germany."

The trial of Karen McCarron, who is accused of killing her autistic daughter Katie, who was three years old, has been postphoned. According to her defense attorney Marc Wolfe, the October 1 trial date has been postphoned because his expert medical witness has yet to examine McCarron for a mental evaluation. More details here.

In his BBC Ouch! column this week, Tom Shakespeare focusses on a series of disturbing attacks on people with disabilities and their representation in the media. He discusses the concept of "hate crime" against people with disabilities, and argues that the term is over-dramatic and risks creating unnecessary fear among pwd's. A better term, he believes, is bullying. Other factors that explain the rise in such incidents are the polarisation of society and individualism.