Friday, December 28, 2007

What to Do About Javona Peters?

Javona Peters is a 16 year old girl who, due to a surgical complication, is now in a "persistent vegetative state." Her parents are duking it out about whether to "pull the plug." The following link explains the case as well as includes commentary from Wesley J. Smith.

http://www.northcountrygazette.org/news/2007/12/28/whats_the_rush/

Note that at the end, Smith refers to Haleigh Poutre, an eleven year old who awoke from a "persistent vegetative state" just as "pulling the plug" was about to occur. If you are unfamiliar with Haleigh Poutre, see http://michellemalkin.com/2006/01/19/haleigh-wants-to-live/. Poutre's story, aside from the coma issue, is an extremely grim reminder of the connection between domestic violence and disability.

Finally, I would also like to note for those who may be wondering: "persistent vegetative state" is a sloppy term that doesn't really explain whether someone is about to die, because no one really knows. Instead, I'd see it as a form of disability, for example under the ADA definition which defines disability as something that limits major life functions (obviously). The question that has people going is whether life in a "persistent vegetative state" is a life worth living, and who is the best judge of that. The person with this condition may be on a feeding or breathing tube, but again those alone are not an indicator of proximity to death or suffering. I'd also agree with Smith that the use of "vegetative" or "vegetable" is a cultural putdown used on lots of folks that does nothing but generate negative feelings.

The question for FRIDAwatchers is: Is Javona's story a feminist disability rights issue? Without a great deal of information being given out in the press as yet, we can see that this story involves a mom and a dad making a separate decision about their daughter's life. Their relationship complicates the matter, especially with media involved as one gets painted the good parent. I think the single motherhood angle is of concern as so many children with disabilities have single moms, who are under a lot of pressure. Obviously, Javona is a girl...and for some reason it seems like the girls in a coma get a lot of press. Why is that? We should really be examining why the media goes for the damsel in distress thing, in general. Why do editors seem to feel readers need these stories? It must sell...

Questions, questions...what should be done? And what should we do?
California Disabled Mom Fights to Keep Child (Again)

Fisher: A disabled San Jose mother fights again for right to raise child
By Patty FisherMercury News
Article Launched: 12/28/2007 01:33:54 AM PST

The first time Sabreena Westphal went to court to try to keep her children, she became a celebrity.

Suffering from cerebral palsy and unable to walk or fully use her arms, she was still determined to care for her two young sons. Disabled parents and advocates rallied behind the young woman with the pixie haircut and impish smile who, at the time nearly 20 years ago, went by the name Tiffany Callo. She was the subject of a book, "A Mother's Touch: The Tiffany Callo Story." She rode in a limousine to an appearance on "Donahue."

But the book didn't come with a happy ending. Her little boys were adopted and taken far from her San Jose home.

Five years ago, she became pregnant again. And now she's back in court.

This time, Westphal, 40, is trying to prevent her 5-year-old daughter from being adopted by a couple in San Joaquin County. This time, she has the Americans with Disabilities Act of 1990 on her side and a political landscape that has changed substantially for disabled Americans.

For the rest of the story see: http://www.mercurynews.com/ci_7827393?IADID=Search-www.mercurynews.com-www.mercurynews.com&nclick_check=1.
We've Been on Break, But the Struggle's Still On!

It's been that vacation kinda time of year again, FRIDAwatchers, but the struggle continues. Are you ready for a new year of resistance? I am!

Linda from Rochester NY has been watching the disability radar across the US and forwarded a couple of important stories to watch. Many thanks to Linda. See, keeping an eye on the news and doing some web surfing is how we know where people are struggling. I cannot stress how important that is. If we can locate the places of struggle, then we can think, as a community, of ways to try to right the wrongs being done.

In particular, we need to bring forward the cases where women with disabilities are facing struggle. It doesn't have to be brought forward on this site, but somewhere (although hopefully we'd hear about it!). It is SILENCE that is holding us back from living the lives we are capable of living, and you never know when someone else's issue will become your own personal issue. Doesn't mean you gotta be a loudmouth, but speak out in whatever way you know how.

I will post the links to Linda's stories in just a couple of minutes. See the rest of today's postings for the stories.

Monday, December 17, 2007

New Crip Women's Site and Other Biz

Hi folks, we don't announce every new addition to our list of blogs, but today we added For Disabled Women (http://www.4dwm.org/wordpress) under our feminist resources at the right of the page. This site is being created by some of our crip sisters and is brand new, so I wanted to direct some traffic over there. Go check them out!

In addition, I'd like to invite anyone who has been reading this blog to go ahead and comment or ask questions!! I heard a woman recently say that she reads this blog but was too shy to comment. This is a community forum and anyone is welcome to comment. Pretty much the only thing that I (as one of the moderators) try to block is blatant spam advertising. If you look through the site, we definitely have allowed comments that we don't agree with. It is important to know what people are thinking and to talk about issues. You can even request that FRIDA bloggers talk about issues you want to discuss. So, give it a shot. You don't have to be disabled to comment! Or even a good speller! We're not looking for any kind of certificate. ;)

We expect that posting will slow down on this site through the New Year, but who knows? Even as many of us celebrate various winter holidays at this time, I want to ask you to remember those of our disabled brothers and sisters for whom the holidays can be a very stressful and difficult time. Please take some time to make sure that the people in your life feel loved, relaxed and appreciated. Some of our people don't have families and some of our people don't have homes. Some of our people are in hospitals. So, not only at this time of year but all year round, help us all give meaning to the words "disability community" by doing whatever you can to make sure folks know they are not alone.

And finally as 2007 begins winding down to a close, thank you all for this tremendous year we've had! FRIDA is looking forward to several FRIDAlicious activities planned for 2008 and we hope YOU will join us, either in person or online.

Sunday, December 09, 2007

DNR on Wheelchair for Second Grader with Cerebral Palsy

Schools ponder role as child nears death
Kids' Do Not Resuscitate orders prompt debate
By Jeff Long
Tribune staff reporter
December 9, 2007

As the school bus rolled to a stop outside her Lake County home, Beth Jones adjusted the bright yellow document protruding from the pouch of her daughter's wheelchair, making sure it was clearly visible.

In bold letters it warned, "Do Not Resuscitate."The DNR order goes everywhere with Katie, including her 2nd-grade classroom at Laremont School in Gages Lake. The school is part of the Special Education District of Lake County, where an emotional two-year discussion ended this summer when officials agreed to honor such directives.

Now, district officials find themselves in the unusual position of having planned the steps its staff will, or won't, take to permit a child to die on school grounds.

For the rest of the story, please click on http://www.chicagotribune.com/news/local/chi-dnrkids_bd_09dec09,0,3568955.story?coll=chi_tab01_layout.

I encourage you to post comments to this article at the Tribune site, as well as write to this author at jjlong@tribune.com and to the letters to the editor department using the form at http://www.chicagotribune.com/news/opinion/chi-lettertotheeditor,0,3578487.customform?coll=chi_news_opinion_util.

Saturday, December 08, 2007

Perspective: Where Were We? Here We Are!

I was flipping back through past posts and re-noticed that in January of 2007, someone left a comment on the FRIDA blog wondering why a FRIDA-type response wasn't issued when Terri Schiavo was being killed down in Florida. A blogger named Susan left a good note explaining that, in fact, disability rights activists were involved in the struggle against Schiavo's murder, but the mainstream media chose to ignore us because we were seen as freaks.

One important item for folks to keep in mind is that Schiavo's death in March 2005, together with a rape and a forced sterilization case in the summer of 2005, fed the conviction of FRIDA's founders that we had to do something to stop what was happening to women with disabilities. Hence the formation of FRIDA in the fall of 2005. Most FRIDA members were involved in some way in the battle to keep Schiavo alive, but we were not yet organized as FRIDA. Instead, we worked through other groups, such as Not Dead Yet.

What if FRIDA had been around during the fight for Schiavo's life? Would that fight have looked any different? It's hard to say. There were a lot of cogs in that machine: the in-family battle, the court and legislative proceedings, the right-to-life groups, the anti-euthanasia disability rights groups, and so forth. EVERYBODY had a viewpoint on the Schiavo case. At least a year after she died, I still found Schiavo references most of the times I opened major magazines. Her name is synonymous with one of the greatest moral quandaries of our times: if I become suddenly severely, profoundly cognitively disabled and didn't have any kind of advance directive, should my blood and married kin be allowed to take my life away?

I was reading a blog post by Leslie Carbone (http://www.freerepublic.com/focus/f-news/1375765/posts) that basically says that feminism deserted Schiavo to her fate by setting up a system of cultural beliefs and practices that devalued Schiavo as a person. Read it and its comments for an onslaught of conservative perspective. As I read this, I had two thoughts. First, Carbone has an interest in making feminism look bad (it's all about the self above others! choice, choice, choice!). And second, Carbone doesn't connect feminism to disability rights at all. So what I think is that had FRIDA been able to participate in the Schiavo activism in any meaningful way, one thing we may have been able to help with is putting forward the disability angle in connection with feminism.

Speaking as a Deaf woman and disability activist trying to parse out the feminism and disability connection (not as someone trying to speak for FRIDA as a whole...other members may disagree with what I have to say), a fundamental concept I want people to start thinking about is this: no one disability makes someone less valuable simply because of the severity of the disability.

A person who is paraplegic is just as valuable as Terri Schiavo, who is just as valuable as a person who is blind, who is just as valuable as a person with Down syndrome, who is just as valuable as someone who has AIDS, who is just as valuable as someone who has pica, who is just as valuable as a little person, who is just as valuable as someone who has bipolar disorder, who is just as valuable as a person without a disability. Period.

And men and women and intersex and transgender people are all equally valuable as well.

And none of us are really better off dead. (Are you listening, Hollywood?)

I am not in any way going to disacknowledge the fact that disability can make one's life really complicated. Disability can be a real pain in the ass. It can be very painful and/or isolating. So can, depending on the situation, your gender or sexuality. There are ways to deal with this for the empowered individual (and I don't mean taking a ride into the woods in Kevorkian's van or having a friend suffocate you with a pillow). I just think the difficulty lies in our society and systems, rather than in the people themselves. Society doesn't tolerate difference very well, so then we end up hearing things like, "That poor girl is so disabled! She'd be better off dead or in an institution!" Frankly, when I hear that statement prefaced by, "I'm a radical feminist but...", I'm shocked. My response is, "No, you are not. Your pity is an oppressive attitude that I find offensive not only towards whoever you're talking about, but offensive to society as a whole."

How incredibly disempowering it is to hear that "better off dead" or "pity poor Polly" attitude from a sister! In my view, feminism builds community, so this makes me feel like the speaker wants to cut the disability community off at the knees. This is the way I feel when I read a lot of feminist-related criticism of the Schiavo case...because it hardly ever makes the connection to disability empowerment.

Connecting feminism with disability is in reality a powerful tool against the forces that would demote individualism and self-determination. Self-determination is itself an important idea in the self-advocacy movement, the basic idea being that people should be allowed to make their own decisions, whether or not others will judge those decisions as good or bad. We all have the right to make good and bad choices (obviously, there would be an interventionary line drawn at things like self-harm or harming others). I think that actually goes beyond the idea of just having choices...towards respecting the individual's right to growth.

So, going back to the question of Schiavo and FRIDA...could we have made a difference if we had been organized back then? Who knows? What we do know for sure is that because we saw what happened to Schiavo, our resolve has been strengthened. Now that we have FRIDA there is no excuse for any of us to sit back and say, "There's nothing we can do about being a woman with a disability, and there is no one who will listen." What we do need is for our community to continue to work together and keep bringing issues to our attention and for us all to make feminism and disability rights REAL to all people.

Tuesday, December 04, 2007



Open Wide Tours New Prentice Hospital

Wow! If you are a woman with a physical disability / condition then the new Prentice Hospital is made just for you. They have beds and examing tables that lower almost to the floor. They have lifting equipment to help move you from your chair to table / bed. Unfortunately, if you are a woman who is , blind or deaf or hard of hearing you will have a very hard time receiving services from Prentice.

Open Wide subcommitte as promised toured the New Prentice Women's Hospital we were greeted by 3 tour guides for 6 Frida members and 1 friend of a member. They provided an interpeter. We began right away with alot of questions pretaining to accessibility. They were not prepared for our questions. Alot of our questions were directed to the Patient Representitative who later came out to address our concerns. She had no answers to any of the questions pretaining to blind or deaf or hard of hearing accessibility. She even went as far as saying that no one answers the TTY calls, they never even heard of a VPS service. We kept pushing for an in house intepreter and a disability liason but their response was very common that its too expensive. It was very frustrating to hear once again that inclusive doesn't pertain to all women with disabilities. Our guides recognized our discontent and agreed to an ongoing conversation about the lack of accessibility for all women. We exchanged cards and agreed to follow up.

Sunday, December 02, 2007

Perspective: Getting Into a Feminist Disability Rights Frame of Mind...

Over the last two years that FRIDA has maintained this blog, I've been very pleased to see that, across the digital world, people have been thinking a lot more about feminist disability rights and the relationship between what we in FRIDA call "mainstream feminism" and the disability rights movement. I was looking at this post at The Curvature http://thecurvature.com/2007/09/03/disability-is-a-feminist-issue/. This writer made me very happy because she really batted .500 in terms of connecting the feminist struggle with an ongoing issue in the disability rights movement.

Lest readers think that all we disability rights activists care about is the Jerry Lewis/MDA problem, let me provide a list of feminist disability issues that are also shafting people out of full and equal lives:

Domestic violence and sexual assault services are generally not accessible to people with disabilities, though we've been been advocating for access for thirty years;

Parents with disabilities still often face the possibility that their families or social services will take their kids away just because the mother (or father) has a disability;

Women with disabilities are more likely to suffer physical and mental abuse;

Girls with disabilities are more likely to become pregnant in high school;

Women with disabilities are generally considered less attractive dates and partners;

The rights and experiences of women with disabilities who are institutionalized are by and large unexamined;

People with disabilities have historically been denied reproductive rights and bodily integrity through forced sterilization;

Women with disabilities experience bias in receiving medical services; such as inaccessible examining table and incomplete medical records (because "why would she care anyway? she's retarded!");

A lack of qualified personal care assistants and in home services forces many women with disabilities to stay institutionalized;

Deaf women who use sign language lack access to information and programs because the people who provide such services don't know how to locate and pay for interpreters;

Captioning is not provided on many informational programs designed to empower women;

Women with disabilities, especially young women with physical or cognitive disabilities, are patted on the head and spoken to like children;

Women with disabilities who are institutionalized are not provided with training on how to manage their periods, or are left to sit in their blood and feces until an attendant can get to them, which often takes hours;

Regardless of ethnic or sexual identity, women with disabilities are usually considered among the least of us, not only because they are women but because they are disabled.

There are about 28.5 million women in the US with acknowledged disabilities. Our disabilities range from diabetes and HIV+ to deafness, blindness and physical disabilities like spina bifida. Somewhere between 60 and 70% of us are unemployed. A number of us are in jail or prison. A lot of us have kids. Some of us are sex workers.

Engaging with disability rights in a meaningful way is critical for feminism. What's interesting is that we have a lot of powerful women advocates with disabilities and a powerful body of knowledge, so in reality, when disability rights activists engage with feminists, we really are not starting from square one but have a great deal to discuss and exchange. The problem seems to be just opening that door. I don't think we are faced here with an issue of yet another identity group clamoring at feminism's door-because we're doing that already! we ARE feminists; rather, I think the issue is for us instead to be asking each other, is feminism including everyone? Are we actively asking questions, instead of busying ourselves with gatekeeping "FEMINISM"?

In my own life, while I grew up with parents who role modeled advocacy and empowerment, to be honest it is disabled feminists who I have found most challenging and most helpful to my feminist personal growth. There are a lot of strong disabled women, and not just women but disabled people with a feminist outlook, who are actively fighting to live the lives they want. I say "fighting" because they are being kept from making certain types of choices by social and bureaucratic barriers. A lot of them are members or allies of FRIDA.

Most of us FRIDA people are not feminists by scholarly training or women's group training. I am not. I think we are people who instead seek to be able to make choices; to be independent rather than dependent; who want to love our bodies and love other people's bodies; who take pride in ourselves and in being together in a feminist cause; who take offense at injustice and look at things by asking, "Is it fair to ask women with disabilities to put up with certain things when the rest of the world can do as they choose?" I think FRIDA women also have a lot of guts---because we ask not only what is good for us, but what is good for society, and we try to do something about it.

And if you want to DO something small to learn about society's struggles with women with disabilities just for today, go and Google the names of the following: Carrie Buck, Elizabeth Bouvia, Sharon Kowalski and Karen Thompson, Tracy Latimer, Lois Curtis and Elaine Wilson, Terri Schiavo, Haleigh Poutre, Ashley X, Katie Thorpe.

Friday, November 30, 2007

Some More Pics from FRIDAfest

The fabulous FRIDA pinata (the head of Frida Kahlo)


Aerin and friend celebrate FRIDAfest


Barb kicks ass. A whole lot of ass. Especially Tim's ass.


The FRIDA history timeline (thank you Aerin!)


Barb tries on a FRIDA torso mannequin while Mike Ervin looks on

More FRIDAfest Pics!



Here's another handful for your enjoyment...

Lluvia and Janice having a good conversation


Womyn making a FRIDA mask


Mary giving Sol a ride


William with FRIDA eyebrows painted on and a sanitary napkin nametag


Our potluck organizer, Christine
Robert Latimer Applies for Daytime Parole

In 1993, Canadian Robert Latimer killed his 12-year-old daughter Tracy, who had cerebral palsy, in order to "ease her suffering." He put her in his truck and ran a hose from the tail pipe into the window, and left her to die. The rest of the family was at church.

Latimer is serving a ten year sentence at a minimum security facility and is asking to be released into the community during the daytime.

For a news story see: http://www.canada.com/reginaleaderpost/story.html?id=b57d7d70-af1c-47cb-b698-5d181be5cdad&k=16688.

In my personal view, this case highlights an ongoing problem for women and girls with disabilities, as well as boys and men, namely: are people with disabilities safe from their own family members? Yes, parents should strive to do what is best for their children, but when it comes to people with disabilities, especially those who do not communicate, often the gray area is HUGE. Latimer was supposedly trying to help Tracy escape suffering, but was he really just making things better for all involved (i.e., getting rid of Tracy so the "burden" would end)? Who can really say?

This calls to mind other examples of when families abuse or reject or kill children. What about parents whose children come out as LGBTQ? What about parents whose children inform them that they have HIV? Would most families of children without disabilities who were in severe pain simply kill them?

At a basic level, I think there are lots of parents out there who, intentionally or not, view their children with disabilities as less than full people. I know I work with plenty of young people with disabilities who believe their parents love their nondisabled siblings more, and give them more freedom (and conversely sometimes the siblings feel the parents treat the disabled children in a more special way). A disability-inclusive perspective within families, that does not pity or devalue or infantilize the disabled child, is something that bears further discussion.

Thursday, November 29, 2007

FRIDAfest Pics!


The crowd mingling at FRIDAfest!


FRIFA tshirts and dolls for sale

Our Little Frida of the Day (Lluvia)


Sharon and Sandra checking out wheelchair toggle skirts

Sharon holding one of her toggle skirts....

check out her FRIDA eyebrows (courtesy of face paint!)


More to come....

Tuesday, November 27, 2007

FRIDA Celebrates Our Second Anniversary!

Today, FRIDA celebrated our second anniversary with an all-out FRIDA bash at Access Living! By my guess we had about 60 people attend, most with disabilities, from all different walks of life. We even had out of towners attend (Hi Cilla and Mike!). This was a terrific community event, and if you missed it, you'll have to come back next November.

Our activities included: a FRIDA history timeline, a potluck, FRIDA mask making, raffles of things such as wheelchair toggle skirts, website unveiling, t-shirts and hand-painted mannequins, an auction of Frida Kahlo items, a birthday cake, a mini FRIDA (Lluvia dressed up as FRIDA), lots of music and talking....we still have FRIDA dolls and t-shirts for sale if anyone is interested in ordering some.

This was a great way to wrap up our second year, during which we have seen so much action! It's terrific to have our community come together and just have a really good party. Thanks to everyone who came and here's to a new great year for FRIDA!

Oh PS: Emylee made this incredible pinata that is a Frida Kahlo head, complete with earrings and necklace. Holy crap. I have to get pictures up.... The pinata is currently (unbroken) at Access Living.

Monday, November 19, 2007

AMA Supports Community Choice Act

Thanks to an alert from NCIL's newsletter, FRIDA has learned that the American Medical Association on November 13 voted to support the Community Choice Act as official AMA policy. This is in line with the campaign demands of ADAPT in Chicago in September 2007 and with FRIDA's activity with the AMA. For the press release, see: http://www.ama-assn.org/ama/pub/category/18143.html.

A goal has been met! VICTORY!

FREE OUR PEOPLE!

I don't know if you all remember, but back in January, FRIDA decided it wanted three things from the AMA: to oppose the "Ashley Treatment," to have disability representation within the AMA, and to support the Community Choice Act. We have the third now! We're working on the second.

How did the support of the CCA happen? It appears that a policy to support the CCA was proposed and then voted on. What is outlined in the press release is what we know.

It can't have hurt that 500 people with disabilities surrounded the AMA building in September demanding support for the Community Choice Act, and that our direct action activities were covered not only in the mainstream press but by the AMA in-house newsletter. Getting people to talk about the issue of community choice is often the main way to get folks to take action.

So the momentum continues...a great two year anniversary present!

Sunday, November 18, 2007

FRIDA Activities Update

Hi folks, believe it or not, although our blog has been quiet the last few weeks, we've been busy as heck! This month marks FRIDA's second anniversary and on Tuesday, November 27 from 3 pm to 7 pm we are celebrating with our first ever FRIDAfest. It will be at Access Living, 115 W. Chicago Avenue. We'll be doing a potluck, auction of FRIDA-made art items (including FRIDA dolls!), general fun-making, and...........

We'll be unveiling the FRIDA official website!!!! Oh my gawd!!! Thanks to the Crossroads Foundation and the ever poptacular cripfeminist Joe Hall, we'll finally have a one-stop shop for those looking for info about FRIDA.

So what's been happening this month is we're writing content for our website and we've been making MORE tshirts and having a couple of art making evenings where we've been making FRIDA art that wil go up for auction. We're just getting ready for a full-blown FRIDAhood event! So come and join us if you'll be in Chicago!

Memory lane pit stop: People often ask how FRIDA got started. Well...a couple years ago, six women who worked for Access Living got sick and tired of the crap we saw happening to women with disabilities in the news and we basically decided to start having brown bag lunches talking about different topics. Before long that snowballed into a town hall...which snowballed into direct action campaigns...which snowballed into the national network of feminists and the official Chicago group known as FRIDA today. Mighty oaks really do spring from tiny acorns.

So keep an eye out for our new site at the end of the month (I'm praying this will work out as announced!) and if we're a little quiet this month it's cuz we're gonna explode on November 27!

PS: If anyone out there has any interest in starting a FRIDA chapter, please e-mail me at Ambity(at)aol.com.
PPS: If you're wondering what's up with Linda who so often posts, she's been in Chicago the last few days at a disability biocultures conference! Congratulations on presenting Linda! Thank you for all the work you do on this blog!

Amber Smock

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.

Saturday, September 29, 2007

More Support Against the "Ashley Treatment" in Delaware

Recently, the University of Delaware's Center for Disability Studies Advisory Panel voted to support a statement of solidarity against the Ashley Treatment. The snowball of support against the treatment continues to grow! This info comes from Daniese McMullin-Powell, who noted that the vote actually passed by a slim margin (8-7).

McMullin-Powell also notes that one of those who voted against the statement is a CIL director. She says, "Shame on the Director of Freedom CIL in Delaware who voted NO on the solidarity statement concerning Ashley X!!! She should be removed!!! She does not deserve to be a part of an organization that stands for people with disabilities in making choices in their own lives. Shame on that woman for voting that caregivers should be making those choices for us!"

The situation in Delaware is a call for a reality check. CIL staff everywhere should note that this past July, members of the National Council on Independent Living voted to support a statement of solidarity against the Ashley Treatment. The basic philosophy of independent living maintains that we, people with disabilities, are the ones who should be making decisions that affect our own lives. If that is not the viewpoint of your CIL, you aren't working for one.

In the case of those who cannot communicate for themselves, the American College of Obstetrics and Gynecology's recommended policy is not to interfere with a person's body unless they are in danger of grievous or mortal harm. In other words, don't fix it if it ain't broke or dying.

Friday, September 28, 2007

Go girl!

Karen Gaffney has swum across Lake Tahoe, the nation's second-deepest lake. Gaffney, who is 29, and from Portland, has become the first person with Down syndrome to swim the nine-mile distance from the Nevada shore to the California shore.

Her time: six hours, 15 minutes.

As noted in Monday's post, Gaffney is an avid swimmer whose accomplishments include swimming the English Channel on a relay team in 2001, and the swim portion of the rigorous Escape from Alcatraz triathlon in the San Francisco Bay.

Gaffney, who is a graduate of Portland State University, and now works for the Karen Gaffney Foundation, which she helped start at Portland State, made the swim to raise money for the National Down Syndrome Congress, a non-profit organization that raises awareness about Down syndrome.

"I really hit a home run on the swim," Karen said, after completing her swim on Tuesday. "I really made a lot of people proud."

Way to go, Karen!

For more coverage of Gaffney's swim, see here, here and here.

Wednesday, September 26, 2007

Model with Asperger's on America's Next Top Model

In case you haven't already heard, the reality TV show "America's Next Top Model" features a contestant named Heather who has Asperger's syndrome. You could have knocked me over with a feather because I found this out just by flipping channels over dinner! Feminists reading this blog may have varying perspectives on the profession of modeling and why people actually watch ANTM, but regardless, Heather's a fellow woman with a disability taking a step outside most people's comfort zones. So Heather, good luck to you, and here's hoping that your fellow contestants and American viewer learn a few things about people with behavioral differences. FYI she made it through the first round with very positive comments on her modeling from the judges (and snarky immature comments from some of her fellow contestants---Heather, tell those girls a thing or two about why diversity is okay!).

If you would like to know more about Heather, the link to her contestant page is below.

http://www.cwtv.com/thecw/americas-next-top-model09-heather

Monday, September 24, 2007

Frida Feminist-Disability Links #6

This week in the news:

Sheriff's officials in Tustin California claim that their use of a Taser stun gun to subdue an autistic teenager, who left a social services center where he was being treated, was necessary. But not according to his parents, who say they overreacted. Full story here.

In another disturbing tasering incident, a 56-year-old woman in a wheelchair died shortly after being shocked ten times for a total of 165 seconds with a taser gun during a confrontation with police. As reported in this article, officers say they arrived to find the woman, who also had a documented mental illness, armed with two knives and a hammer, which, according to the officers, she was swinging at family members and police. A medical examiner found that the woman died from hypertensive heart disease and cited the Taser gun shock as a contributing factor. On her death certificate, the medical examiner ruled Delafield's death a homicide.

Anger as airline refuses to fly double amputee disability activist, Carla Luis. According to this report, the Portugese airline TP pilot told Luis that she could not fly without a medical certificate or a companion. Although several passengers offered to accompany her, and Luis pointed out that she was not sick, the pilot refuse to take off and she was forced to take another flight.

A woman with epilepsy, who was bullied and called a "silly little girl" who "lacked a business brain by two company managers at Estee Lauder, where she worked, has setted her case with the firm after winning a tribunal claim for direct discrimination, disabaility discrimination and harassment. According to this report, Estee Lauder has apologized for what happened, told the woman that her job is still open to her, and that it will change the way it trains its managers so as to avoid bullying in the future.

Here is link to an article about disability activist Eli Clare. In it, Clare discusses his most recent work The Marrow's Telling, which will be available this month. Dedicated to the work by and for trans and genderqueer men, the Marrow's Telling is a collection of prose and poetry that examines embodiment, and in particular, the physical ramifications of Clare's cerebral palsy, rural upbringing, gender transgressions and his traumatic and abusive childhood. Clare is the author of 1999's Exile and Pride: Disability, Queerness, and Liberation.

A link here to an article about Disability Action Movement Now, a new disability rights organization in Ontario, Canada. Officially known as DAMN 2025 (which reflects the target date to make Ontario barrier-free), the group brings together groups from across the disability spectrum.
Karen Gaffney will swim across Tahoe tomorrow

Karen Gaffney will swim accross Lake Tahoe tomorrow starting at 5.3am.

Gaffney, who has Down syndrome, started swimming at 9 months old. She is an accomplished athlete who has swam the English Channel as part of a relay team in 2001 and has swum the San Francisco Bay seven times in training for triathalons.

"I'll be thinking about keeping my pace and speed while I'm swimming," Gaffney said.

The swim is expected to take about nine hours and will start on the east shore at Dead Man's point, and will end at Sugar Pine Point on the west shore.

Gaffney, who is a graduate of Portland State University, and now works for the Karen Gaffney Foundation, which she helped start at Portland State, is swimming to raise money for the National Down Syndrome Congress, a non-profit organization that raises awareness about Down syndrome. To help support the organization, go here.

NBC's "Today" show is expected to cover Gaffney's swim live during its Tuesday morning broadcast.

Friday, September 21, 2007


The AMA Five
Believe it or not, months after our February 20 meeting at the AMA, a photo has turned up of the five of us who met with the AMA CEO and Chairman of the Board. Standing, left to right, are Rahnee Patrick, Amber Smock, Donna Harnett and Donna Shaw. Seated is Diane Coleman. We are inside the lobby of the American Medical Association. Enjoy. Thanks to Gary Arnold for making sure we got this image.


I think this is our first FRIDA image...partly due to the fact that I've finally figured out how image upload works.

Community Choice Act: Help Needed

Via Adapt:

The hearing for the Community Choice Act, CCA, (S. 799) in the Senate Finance Committee is September 25th. That's NEXT TUESDAY at 10:00 AM in the Dirksen Senate Office Building, Room G-50.

We want to make sure ALL the Finance Committee members attend the hearing; sometimes only one or 2 are there. The more we can get to attend, the more will learn about the bill and these issues.

We need your help to ensure that as many as possible of the Senators on the Committee attend this hearing. Please contact them and ask them to attend. Let them know why you care, and ask them to support the Community Choice Act S. 799.

Democrats:

MAX BAUCUS, MT (Chair of the Committee)
JOHN ROCKEFELLER IV, WV
KENT CONRAD, ND
BINGAMAN, NM
JOHN F. KERRY, MA
BLANCHE L. LINCOLN, AR
RON WYDEN, OR
CHARLES E. SCHUMER, NY (co-sponsor)
DEBBIE STABENOW, MI
MARIA CANTWELL, WA
KEN SALAZAR, CO (co-sponsor)

Republicans:

CHARLES GRASSLEY, IA (Ranking Minority Member)
ORRIN G. HATCH, UT
TRENT LOTT, MS
OLYMPIA J. SNOWE, ME
JON KYL, AZ
GORDON SMITH, OR
JIM BUNNING, KY
MIKE CRAPO, ID
PAT ROBERTS, KS
JOHN ENSIGN, NV

Senate Finance is the "committee of jurisdiction" for the CCA in the Senate.(That means they are the committee that will decide about the bill moving onto the full Senate for passage.)

Monday, September 17, 2007

FRIDA feminist-disability links #5

News and views to catch up with:

It's reported here that a woman in a deep coma woke up after doctors removed her life support. After having a pacemaker implanted for her heart condition and spending time in rehabilitation, she describes her post coma condition as pretty great.

It is reported here that women with disabilities have fewer clinical breast exams and fewer mannograms than nondisabled women. One national study found an 11 percent gap.

Australian euthanasia advocates have modified an ordinary coffee pot which they say will enable the terminally ill to concoct a banned suicide drug in their own kitchens. For more details, including an overview of a five-minute video about the procedure, go here.

Globe correspondent Erin Conroy reports here on the controversy that has resurfaced over the use of skin shock treatment and aversive therapy at Judge Rotenberg Educational Center. As reported by Conroy, an article about the Canton-based insitution, dubbed the "school of shock," has reignited efforts to pass legislation limiting the facility from giving children electric shocks as a form of treatment.

Here is a link to a the details about a new talk show on Disability News Radio for parents and caregivers of children/adults with special needs. The show will be broadcast every Wednesday at 1.30pm ET.

On Wednesday last week, transplant surgeon Hootan C. Roozroh pleaded not guilty to two felony charges related to his unsuccesful attempt to harvest Ruben Navarro's organs last year at Sierra Vista Regional Medical Center. He was charged in July with three felonies: dependent-adult abuse, administering a harmful substance (Betadine) and unlawful prescribing of a controlled substance (morphine). Read More...

Via Lawrence Carter-Long, Director of Advocacy Disabilities Network of NYC, a link to the findings of a report about the self-representations and expectations of youth with disabilities, how they differ across disability categories and demographic groups, and how they compare with youth in the general population. The study, funded by IES, was initiated in 2001 and has a nationally representative sample of more than 11,000 students with disabilities.This report presents findings drawn primarily from telephone interviews or self-administered mail surveys collected from youth when they were ages 15 through 19.

A guest columnist in The Minnesota Daily describes how her perspectives about people with disabilities were transformed after becoming a personal care attendant. Read her column, called Disability: A Social Construct, here.

This story from NPR, by Joseph Shapiro, reports on the inaccessibility o f medical care to people with disabilites. It includes advice on what people with disabilties can do to to get proper access to health care.

In this article from the New York Times, Frank Brunin reflects on the unwelcoming nature of certain "accessible" restaurants in New York City.