Female Suicide Bombers with Down Syndrome

Bombers Had Down Syndrome, Official Says
Dozens Dead In Bomb Attacks In Baghdad
POSTED: 11:48 am CST February 1, 2008
UPDATED: 11:53 am CST February 1, 2008

BAGHDAD -- Remote-controlled explosives strapped to two mentally retarded women detonated in a coordinated attack on Baghdad pet bazaars Friday, Iraqi officials said, killing at least 73 people in the deadliest day since the U.S. sent 30,000 extra troops to the capital last spring.

The chief Iraqi military spokesman in Baghdad, Brig. Gen. Qassim al-Moussawi, claimed the female bombers had Down syndrome and that the explosives were detonated by remote control, indicating they may not having been willing attackers in what could be a new method by suspected Sunni insurgents to subvert stepped up security measures.

U.S. Ambassador to Iraq Ryan Crocker said the bombings showed that a resilient al-Qaida has "found a different, deadly way" to try to destabilize Iraq.

"There is nothing they won't do if they think it will work in creating carnage and the political fallout that comes from that," he told The Associated Press in an interview at the State Department.

The first attack Friday occurred at about 10:20 a.m. in the central al-Ghazl market. The weekly bazaar has been bombed several times since the war started but recently had re-emerged as a popular place to shop and stroll as Baghdad security improved and a Friday ban on driving was lifted.

Four police and hospital officials said at least 46 people were killed and more than 100 wounded.

Firefighters scooped up debris scattered among pools of blood, clothing and pigeon carcasses.

About 20 minutes later, a second female suicide bomber struck a bird market in a predominantly Shiite area in southeastern Baghdad. That blast killed as many as 27 people and wounded 67, according to police and hospital officials.

One witness who declined to be identified told AP Television News that the woman said she had birds to sell, then blew herself up as people gathered around to inspect them.

For more, see: http://www.nbc5.com/news/15195570/detail.html?treets=chi&tml=chi_12pm&ts=T&tmi=chi_12pm_1_12150302012008.

Another Sister Caught in Court Battle Over Whether She Should Live or Die

Parents battle over life of brain-damaged daughter
http://www.delawareonline.com/apps/pbcs.dll/article?AID=/20080131/NEWS/801310382
Lauren Richardson, 23, has been in a persistent vegetative state since taking an overdose of heroin in August 2006

By SEAN O'SULLIVAN, The News Journal
Posted Thursday, January 31, 2008

In a case with parallels to the 2005 uproar over Terri Schiavo, a Newark father is fighting a court order that could allow the removal of a feeding tube and end the life of his brain-damaged daughter.

"She's committed no crime and doesn't deserve to have this death imposed on her," said Randy Richardson, 52, on Wednesday.

According to court records, Lauren Marie Richardson, 23, is in a persistent vegetative state following a heroin overdose in August 2006. She was pregnant at the time and was kept alive at Christiana Hospital -- with feeding tubes and a breathing machine -- to allow her to give birth, which she successfully did in February 2007 to a healthy baby girl.

Late last week, a court awarded guardianship of Lauren Richardson to her mother, Edith Towers, who maintains her daughter did not wish to live this way and seeks to end artificial life support measures.

Randy Richardson has appealed a ruling by Delaware Court of Chancery Master Sam Glasscock III, putting any action on hold until the court's chancellor or a vice chancellor reviews the ruling, a process that will take at least three months.

Once that ruling is made, one side or the other may be able to appeal to the Delaware Supreme Court.

While the case is similar to the one involving Schiavo, legal experts said that matter did not set any precedents Delaware has to follow.

"That was a case about Florida law," said Drewry Fennell, executive director of the American Civil Liberties Union of Delaware.

In the Schiavo case, her husband, Michael Schiavo, waged a seven-year legal battle to end life support for her, stating that she did not want to live by artificial means. Schiavo's parents opposed removing a feeding tube. A lower court and later the Florida Supreme Court sided with Michael Schiavo. The U.S. Supreme Court ultimately declined to intervene and in March 2005, the tube was removed. Terri Schiavo, 41, died 13 days later.

Lauren Richardson, a Glasgow High School graduate, did not leave a "living will" stating her desires in such a situation, or use a mechanism in the Delaware law called an Advanced Health Care Directive, a simple form a person can fill out to make their end-of-life wishes clear.

Randy Richardson acknowledges that the daughter he knew before her brain injury is gone. But, he said, she is still alive and responds to him. He said she has made progress since her overdose -- she no longer needs a ventilator to breathe -- and given more time and therapy that can continue. "We just want to give her a chance," he said, adding he is not talking about extreme measures.

He also said she should be kept alive for the sake of her 1-year-old daughter, and is concerned Towers, his ex-wife, has not allowed Lauren and her child to see each other.

On Wednesday, Richardson and the Delaware Pro-Life Coalition Inc. released a video of Lauren taken recently at The Arbors, a nursing home near New Castle, where she is receiving treatment. In the video, Lauren appears to respond and react to family members and a dog.

"There is no life support except ... a feeding tube," Richardson said, adding he has been told that with the proper therapy, his daughter could be taught to eat.

He said he would like to take her home and allow her to live out whatever is left of her life with dignity and not have it end in slow starvation with the removal of a feeding tube.

'A very private situation'

Lauren's mother declined comment through her attorney William A. Gonser Jr. beyond a brief statement on Wednesday: "This is a very painful, very sad and very private situation and both sides have suffered greatly."

In court, Towers argued that her daughter told her and others, at the time the Schiavo case was in the news, that she would not want to live that way.

According to court records, Towers recalled her daughter saying, "Don't ever leave me hooked up to life support. I would not want that. I think it is horrible. I think that I do not ever want to be kept on life support if the doctors say there's no hope."

Towers testified that she then promised her daughter she would not and made her do the same if she ever ended up in that situation.

An uncle also testified, according to the ruling, that in a separate conversation Lauren told him such an existence would be "gross" and she wouldn't want to live like that with others caring for her.

Richardson, who divorced from Towers when their daughter was young, disputes the accounts, saying Lauren was living with him at the time and expressed no such wish.

The court ruling indicates Lauren moved around among relatives.

Richardson said his former wife never mentioned his daughter's statements about life support and the Schiavo case before she filed for guardianship.

He also said his daughter made clear other end-of-life matters -- like her wish to be an organ donor -- but did not write a "living will" or state her opposition to life-support measures in her journals. Richardson also said his daughter had expressed anti-abortion sentiments, as in the case of her then-unborn daughter when she was encouraged to get an abortion.

Towers has temporary custody of Lauren's child, but Richardson said a second guardianship case is pending on that issue.

A difficult decision

In his Jan. 24 decision, Glasscock wrote that he believes both parents were fit to be Lauren's guardian and both love her and wish for what is best for her. However, he found that testimony presented by Lauren's mother was "clear and convincing" about her wishes and the evidence "presented by Lauren's father does not change this conclusion."

As for Lauren herself, Glasscock wrote, "All the medical evidence supplied by the physicians -- by the independent neurologist and by Lauren's own doctors -- is in agreement: Lauren is not in a coma but is in a persistent vegetative state. A large portion of her brain was destroyed by a lack of oxygen following a heroin overdose of August 2006. She is unable to communicate or experience consciousness. Her continued existence is dependent upon tube feeding and hydration. ... No improvement in her condition can be expected."

Richardson said he disagrees and, in addition to filing an appeal, reached out to several groups for assistance, including the Delaware Pro-Life Coalition, which organized a prayer vigil Wednesday outside The Arbors. About 25 people turned out, some carrying pictures of Lauren.
Richardson said the vigil was not protesting The Arbors, where he believes his daughter is being treated well.

Fennell, of the Delaware ACLU, said it is a sad situation for all involved but the system appears to be working the way it was intended.

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, agreed. Delaware is a state that does not require living wills or other written documents to allow for someone to be removed from life support, he said. It is among the states that allow verbal testimony from friends and family about what the patient would have wanted.

"There will be a scramble with each parent locking horns, trying to find friends and relatives who she said things to about this issue," he said.

Caplan said the ruling giving guardianship to the mother makes it tougher for the father to make his case.

"The burden will be on the father to prove the mother is not emotionally or psychologically qualified to act in the best interest of the daughter, and reflect her true values," he said.
Outside The Arbors on Wednesday, Richardson said he waited 17 months before saying anything publicly. "We didn't want to do this. It is not in my nature to speak to newspeople. ... But if I don't, who will? I love my daughter."

News: ADAPT Activists "Welcome" Dr. Diekema Back to Michigan

On Friday, January 18th, 2008, after just 24 hours or so of frenzied planning (research, literature development, layout reconnaissance, trumpet calls to local troops, and alerting the media), the efforts of eight members of MI ADAPT culminated in a great and successful action in Grand Rapids, MI, at Calvin College's the January Series lecture, entitled, "Love, Justice & Humility: A Bioethicist Meets the PillowAngel."

Lansing ADAPT and Grand Rapids ADAPT joined forces (with encouragement from around the state) at the alma mater of Dr. Douglas Diekema, chair of the ethics review board at Seattle Children’s Hospital that approved what has become known as the “Ashley Treatment,” which stunted the growth of a child with mental and intellectual disabilities named Ashley in 2004. In addition to the growth attenuation "therapy" from high doses of estrogen that fused her growth plates, thus stunting her growth, it was also decided for Ashley that she would receive a hysterectomy and have her breast buds removed, at 6 years of age. These three procedures are often collectively referred to as the "Ashley Treatment" (a title that Diekema finds inappropriate and insensitive).

Although our group was small, we had barely a day's notice of the event (two of our members were up until the wee hours of the morning copying flyers and settling final details), and the temperature was not even 20 degrees, we came on strong. At a strategy meeting that morning, we decided that, because of our small numbers, our lack of time to do more in-depth planning, and given the fact that we were at a small, conservative college, our best approach would be to educate the public about the Disability Community's perspective on the case. To do this, we would distribute flyers and ensure that we had a presence at both the lecture and the follow-up discussion.

As our caravan was unloading (contemplating changing our goal to getting this thing rescheduled to a warmer day), sharp-eyed but reasonably cordial Campus Security guards spotted our signs and made it clear that we would not be able to hang or tape signs anywhere or take them into the lecture hall with us, nor could we pass out literature indoors or in the walkway leading to the entrance of the building. This was a slight snag in that holding signs and passing out flyers in the frigid and windy weather would be rough, but in true ADAPT form we were not deterred!

In general, we were well received. In fact, two professors of Disability Studies (one with a significant physical disability), and a few other people, expressed how grateful they were for our presence and thanked us for "fighting the fight."

With members at every entrance and two people in the main lecture hall (we had only planned on one going inside for the whole lecture, but the wheelchair-using professor of the Disability Studies class--which is currently studying ADAPT, by the way!--became star struck when he found that he was actually talking to "the Weasel" and insisted that Weasel go in as his special guest), we distributed almost 600 flyers and had several good conversations with the public AND the media! (Apparently, a short blurb was on a regional Grand Rapids television station--Wood TV 8.)

As the crowd arriving died down, we all decided to watch the presentation in the overfill room. Dr. Diekema spoke on the medical facts of Ashley's case and how the ethics committee came to its decision. We were surprised at how technically he spoke of Ashley and how he said nothing of the social implications of these procedures. At the conclusion, members of the audience had a short opportunity to ask questions of Dr. Diekema. We were fortunate that one of the two questions asked came from one of our members, Joe Stramondo, who challenged him to explain why Ashley's parents and the committee opted for such extreme, irreversible medical procedures rather than use personal care services, durable medical equipment (i.e. a hoyer lift) and other such supports. Dr. Diekema appeared a bit flustered at the suggestion that this decision was driven by social stigma and eventually had to admit that these other options were rejected merely because the parents did not want to use them.

Following the lecture was a guided discussion sponsored by CALL (Calvin Academy for Lifelong Learning) that was facilitated by Dr. Ronald Hofman, a pediatrician and friend of Diekema. The participants of this discussion included members of the medical community, Dr. Diekema's brother (who had a slight, visible physical disability), citizens who clearly fell on both sides of the issue, and two mothers of multiple children with significant disabilities, whom the facilitator had planted from among his own patients. Our members packed the back of the room.

It was obvious by both the setup of the room and the initial direction of the "conversation" that they were not expecting us or our perspective. Hofman was clearly of the opinion that the team of bioethicists who signed off on all three of the elective procedures requested by Ashley's parents (growth attenuation, uterus-removing hysterectomy, and breast bud removal), had NOT overstepped any moral line in the sand in terms of the autonomy, value, bodily integrity, and equality of the patient in her original, natural state.

The comments of ADAPT and a couple of other people in the audience made clear that this line drawn by Ashley's inherent rights as an individual human being (regardless of her doctors' certainty that she would always remain the mentally functional equivalent of a 3-6 month old child), was the heart of the matter and the reason to hold such a conversation, rather than the emotion diffusing "how did it make you feel" questions and the "that's a very reasonable reaction" responses. We did not allow the topic to be coddled or the audience to be lulled to sleep. We were the voice of reason that encouraged others to express their doubt. We know this to be true because we were told so afterward by those very people.

To the facilitator's credit, he rode the wave we created quite well, calling on the "folks in the back of the room" as readily as anyone else in the audience, though this was surely to retain decorum and control, certain that we would make our points whether called on or not. About that he was right, and with good reason because our points were good. ADAPT's perspective on the issue is right, true and clear: Ashley X is a real person and denying her the right to be all that she can be (even in the name of providing love and care) is wrong! These operations were elective, in no case alleviating any certain discomfort of Ashley's. Numerous alternatives existed and were rejected for non-medical reasons. Ashley would live with the decisions that were made for her parents' convenience long after she no longer lived with those parents. (That point, made by Ian Engle, got his words, picture, and angle into the Grand Rapids Press the next day!)

Parental convenience (choice) OVER personal autonomy (choice) is the same as money over freedom (i.e. institutional care over choice, Kevorkian's "understanding" of the woes of his patients over the treatment and support they deserve, or Nazi Germany's "solution" over the lives of so many millions of innocent people). The fact that Ashley cannot express her choice does not constitute forfeiture of her right to have one.

Please, do not mourn, ORGANIZE!!! -- Theresa Squires, Melinda Haus-Johnson, Laura Hall, Teresa Christmas, Shana Holet, Joe Stramondo, Ian Engle, and Clark (the Weasel) Goodrich Lansing ADAPT/Grand Rapids ADAPT
ADAPT's voice needs amplification. Be proud, get Loud! Lead On!!!

Mother pleads not guilty in death of disabled son

Sandra Greenwoood, 60, has pleaded not guilty to the charge of "neglect of a resident resulting in death and involuntary manslaughter" stemming from the death of her disabled son, Jared Greenwood, the Farmington Daily Times and KDBC-4 reports. Jared Greenwood, 26, who was autistic and mentally impaired, was found dead on the bathroom floor of the Bloomfied (New Mexico) home that he shared with his mother and sister, Journey Greenwood, on September 30, 2007. His body was covered in feces, dirt and garbage. It's been determined that he died from a blood infection that he developed from several deep, open sores that were the result of his body remaining in one position for a long time. A dose of antibiotics could have saved his life, the Daily Times reports. The state had stopped paying for Jared Greenwood’s care in March 2007 because disability paperwork had not been refiled. Sandra Greenwood still received state funding to take care of Journey, who has Downs syndrome.

How not to ask, why did this happen? Where was the help? The follow-up when the disability paperwork was not refiled? What kinds of support, if any, was this family receiving? friends? family? community? neighbours? Raising children with disabilities is not a solitary endeavour.

Mother Who Killed Daughter With Autism Guilty

http://www.pjstar.com/stories/011808/TRI_BFHFCF3Q.025.php

'Justified verdict'
Former doctor prepares for prison term after being found guilty of 2006 murder
Friday, January 18, 2008
BY KEVIN SAMPIERof the Journal Star

PEKIN - There was a noticeable difference in Karen McCarron's choice of clothing Thursday, leading some to speculate she was preparing for jail.

And now, after a nine-day jury trail, she is on her way to prison. McCarron was found guilty Thursday of suffocating her 3-year-old autistic daughter Katherine "Katie" McCarron with a garbage bag.

McCarron, 39, of Morton sat silently in Tazewell County Circuit Court as she was found guilty of two counts of first-degree murder, one count of obstructing justice and one count of concealment of a homicidal death.

Absent were the professional business-like clothes she wore throughout her trial, instead replaced with light-colored jeans.

She carried a black backpack with her and wore white canvas shoes with no laces, and for the first time, glasses instead of contact lenses. There were smiles and hugs among husband, Paul McCarron's family, who softly cheered as the guilty verdict was read.

"If the measure of a person's life could be quantified by the number of people that loved them, then Katie, in her brief 3 1/2 years, achieved well beyond all of us," Paul McCarron said in a prepared statement about his daughter after the trial.

Karen McCarron told police and jurors about driving to her mother's empty Morton home on May 13, 2006, and wrapping a plastic garbage bag around Katie's head until she died.

She then drove the girl's lifeless body back home and put her in bed as if she were asleep.

Paul McCarron, who is in the process of divorcing his wife, cried as the verdict was read, but Karen McCarron showed no emotion.

She has been free from jail on $1 million bond since June 9, 2006, but Judge Stephen Kouri revoked that bond after the verdict.

Handcuffs clicked around McCarron's wrists and she was led out of the courthouse by Tazewell County sheriff's deputies.

Karen McCarron's attorneys, Marc Wolfe and Steve Baker, entered a not guilty by reason of insanity defense on her behalf, which was rejected by jurors as well as the option of guilty but mentally ill.

Jurors deliberated about four hours Wednesday and five hours Thursday before making their decision.

Wolfe said he was "extremely disappointed" with the guilty verdict and said, "I'm certain she's disappointed as well," referring to his client.

Karen McCarron was mentally ill at the time of the killing, Wolfe said, and he thought the evidence showed that.

"The testimony bore out the connection between her illness and the crime," he said, but stopped just short of confirming he will appeal the verdict."Certainly that option will be explored," he said.

Kevin Johnson, chief assistant Tazewell County state's attorney, said he told Paul McCarron and family the trial would be a long and difficult process.

"Today we reached the end of that journey with a justified verdict," Johnson said.

Paul McCarron stood next to prosecutors after the trial and thanked them and police for their work.

"We are blessed to have these caring and professional people in our community," he wrote.

The sentencing range for first-degree murder is between 20 and 60 years, but because Katie was younger than 12 years old, that sentencing range increases to between 60 and 100 years.

A sentencing date was not set Thursday but is expected to be scheduled today.

Numerous witnesses said Karen McCarron, a former pathologist, couldn't accept Katie's autism and was obsessed with finding a cure.

When a cure couldn't be found and suggestions of institutionalizing the girl and giving her up for adoption were rejected by family members, she chose to kill her.

Katie was sent to a special school for children with autism in North Carolina, where she lived with her father for nearly two years. Karen McCarron pursued various types of therapies and hired caregivers to work with her daughter as the obsession with curing the autism grew.

"I ask all parents, and especially those of children with disabilities, to always love your children and be proud of them," Paul McCarron wrote in his statement. "Cherish every moment you have with them. Love, patience and tender efforts are the best therapies."

Kevin Sampier can be reached at 346-5300 or ksampier@pjstar.com.

Gerry Mitchell Petition

The following petition is being circulated by the friends of Gerry Mitchell, artist and wheelchair user, who was injured when he was struck by a police car. Please read the story. If you would like to support Gerry's friends in their call for an investigation into the alleged mishandling of the incident by the police department, then consider signing the petition and forwarding it to others.

Here is the link:

http://www.gopetition.com/petitions/justice-for-gerry-mitchell.html

The Persons and the People

Today is the birthday of the Reverend Dr. Martin Luther King, Jr. He would have been 79.

Recently I was in Memphis at an activist gathering, and as part of the weekend's activities, we toured the National Civil Rights Museum as a group. If you don't know it, check out the website at http://www.civilrightsmuseum.org/. This is a very nice museum, renovated from the old Lorraine Motel building, though with some awfully steep ramps for chair users. Anyway, it's set up in a way that has you end right by the balcony of the Lorraine where Dr. King was shot and died on April 4, 1968. The little patch of bloodstained concrete on the balcony has long since been repaired by a square concrete patch, and the visitor has to stay inside behind a glass wall in the exhibit room between the old motel rooms 306 and 308. You can lean on the railing and look out across the street to wherever it was whoever killed him (James Earl Ray's guilt being disputed) was waiting.

Our group had an evening tour, so while I dutifully leaned on the railing and looked out, there was a beautiful moonrise to ponder, but on each side of me were the motel rooms made up to look as they had in 1968. And those really got me to thinking about the day to day life of organizing, about the travel (whether local or national), the constant pushing, the milling of information, the never ending to-do list, the people you meet, the people who don't like you, the people who help you, the committees, the letters, the phone calls, the media, the deadlines, the discussions, the conflicts and tensions, all of it. Some people love it, some hate it, but as far as I can tell, people do it because it must be done. In this, I see Dr. King as an individual I can relate to (although I'm sure his workload was exponentially larger).

Dr. King is obviously different than me in several ways. He was black; I am white. He was a man; I am a woman. He had no apparent disability that I know of; I am deaf. He was a minister; I do not have a religion. People wanted to kill him; I don't think anyone wants to kill me. And yet I appreciate some of the labor that went into his work, and I hope to go on appreciating and learning.

We in the disability rights movement, and also in the Deaf community, have no real current individuals who serve in the role that Dr. King did for the civil rights movement. The nation recognizes no one who we instantly know speaks for people with disabilities. We have good, even amazing leaders, outstanding organizers, brilliant policymakers, but I don't think we have a cult of personality per se or a spokesperson (I don't want a spokesperson, do you?). And yet speaking personally, I think that learning about individual people who organized and resisted serves to make us stronger, to see what is possible in the individual.

Growing up, I read like a fiend (whether this was due to my hearing loss, I'm not sure). I remember learning Dr. King's story when I was about seven. When I was eight, my dad brought me home a bunch of old educational stories my school was dumping off...but they were kid versions of the lives of people like Susan B. Anthony, Marcus Garvey, Reies Lopez Tijerina, Geronimo. I read about Gandhi. When I was fourteen, one of my Christmas presents was The Autobiography of Malcolm X (I asked for it). All of these people struck me as doing something new, something different, something to try to resolve matters of justice. I continue to seek out the stories of diverse people (especially women with disabilities) who have sought to make change, such as Wilma Mankiller (has a disability), Annie Dodge Wauneka (had several disabled children), and (obviously) Frida Kahlo (had multiple disabilities).

In fact, I got my start in the disability rights movement through the stories of individuals. In college, I worked on the Disability Rights Movement archive collection at the University of California, Berkeley. I got to sort the papers of folks like Ed Roberts, Patrisha Wright, and Hale Zukas. I learned about Dr. Frank Bowe and Deaf President Now. Later I learned more about ADAPT leaders: Wade Blank, Bob Kafka, Stephanie Thomas, Mike Ervin in Chicago. In looking at these people's work, I began to see how they connected with others and how that, ultimately (in my opinion), is the secret of how they have helped shepherd change.

I think Chicago, too, where I live, is a place full of people folks should pay a lot more attention to...in order to see the largeness of their people's struggle. We're not just Haymarket and Emma Goldman's final resting place. We're moving on, building on what came before us. The world should know about folks like Elvira Arellano and Rudy Lozano, but most importantly for me, there are a lot of people here in the disability and Deaf communities whose lives are so wildly interesting you can't help but get sucked into the community's issues. I don't really want to embarrass anyone by naming names because you're all too modest, but folks, your organizing labor is worthy of being honored on Freedom Day.

Women and the Community Choice Act

Last week, the Health Subcommittee of the U.S. House of Representatives Committee on Energy and Commerce held a hearing on the Community Choice Act, a bill that should be of significant concern to feminists with and without disabilities. Several members of FRIDA are grassroots advocates for community choice, either through ADAPT or through their day jobs. For those who don't know what "community choice" means, it is essentially the ability of those with disabilities on Medicaid to choose where to receive services that support their daily lives, such as bathing and toilet care or a home aide who helps cook and clean. At this time, the vast majority of those on Medicaid who need such services are being forced into the nursing home and state institution industrial complex.

Stephanie Thomas of Austin, Texas, and one of ADAPT's national organizers, made the following comment in the course of her testimony to the Health Subcommittee in favor of home- and community-based supports:

"For the women on this committee, and the women who staff this committee and its members -- take heed. The vast majority of people in nursing homes are women over the age of 65, the vast majority of the underpaid direct careworkers are women, and the vast majority of women who are providing longterm care to family and friends for "free" are women. Is this issue swept so completely under the rug because of this? Who can say? What we can say is that most of you, men and women alike, will have to face this issue in the near future from one of these angles - a recipient of personal care services, a family provider, or through paid service provision.

"I faced it when my father-in-law came to live with my husband and me. A diabetic who had a stroke, he stubbed his toe and soon had to have first that leg amputated and then the other. His eyesight was going and so was his memory of things like whether he left the stove on. It would have been so simple for him to go to a nursing home; "professionals" of various ilks urged us to do it again and again! Despite the fact that my husband and I both have disabilities, we were able to keep him out of a nursing home, and living with us - with the help of attendant services. Today however, he would be on the bottom of an over 40,000-person waiting list and it is doubtful he would have reached the top before he passed away. I will face this again as my quadriplegic husband comes to need even a little more assistance, as my parents get older and -- hopefully last but not least, as I too age and need more assistance."

In the fight to keep people out of nursing homes and in the community, we are lucky to have well-spoken women advocates like Stephanie and many others. I feel that in today's feminist discourse, the spotlight tends to shine on reproductive justice and domestic violence. As deserving of attention as these issues are, I strongly feel that caregiving and personal assistance is also of critical, immediate concern to millions across the United States.

The people (largely women) who provide home and community based supports currently deserve to be well paid, recognized and respected for the work that they do. It is hard, sometimes back breaking, very personal work. I once worked as a personal care/workplace assistant for eight hours a day, and while my employer did her best to ensure that I felt valued and respected, the fact is that it can be a pretty tough job. You have good days and bad days. You have to be THERE, always. I was lucky enough to be paid for it. Millions are not. There are very talented caregivers out there who really go the extra mile to empower their clients, and we are just sticking their heads in the toilet. It is not fair. Recognition and a structure for home and community based supports at the national level is critical.

This Advice Column's Got Me in a Stir

Recently the blogger Moggy alerted us to a Dear Prudence column (see http://www.slate.com/id/2181579/) that includes a letter from an apparently nondisabled woman who is in a longstanding affair with a man who is married to an apparently severely disabled woman. While I personally find little meat to FRIDA-style advocate on this particular column other than writing the paper or the editor, I keep finding myself thinking about the implications of the situation and Prudence's response. The letter and response are as follows:

Dear Prudence,
I am a middle-aged woman who for almost two decades has been having an affair with a married man. His wife is severely disabled and has no interest in sex. He tells me that if I would marry him, he'd divorce her and put her in a nursing home, but I cannot see why that should happen. Their grown children help with her at-home care. I feel deeply loved by this man and want no one else. So, what's the problem? People thinking that I have no man in my life, always making comments about it, and trying to fix me up, etc. My man says that I am free to tell them about our relationship. But when I have opened up and explained my situation, I have to hear what a bitch I am (not close friends, of course). I'm a highly independent woman who pays her own bills and makes her own decisions. I'm tired of pretending that I'm a woman without love, for in truth, I'm loved quite deeply. But I also don't feel that I should have to explain. What's a woman like me to say?
—Not Lonely

Dear Not,
Who are these people who always make comments and try to fix you up? You've said that those who are close to you know your situation. If these are co-workers or casual acquaintances, you have to shut down the inquiries and fix-up suggestions. Saying with a small, enigmatic smile, "I have a very fulfilling life and I'm not looking to change it," should help. I understand that you resent being seen as a middle-aged woman without a partner, but if you're as independent as you say, this misperception shouldn't bother you as much as it does. And surely, not everyone reacts with such hostility to this complicated, difficult state of affairs. If you would prefer that people in your work or social circle understand your love life, perhaps, when the question comes up again, you can explain things to someone with both a sympathetic ear and a big mouth, who will then clarify for everyone else why you're not looking for companionship.
—Prudie

*sigh* I personally am not a big fan of trying to seek advice on personal life issues from a newspaper morals broker, and I'm not going to go in depth on the basic affair issue.

What I am mainly concerned about for the purposes of THIS post, on THIS blog, is the issue of the disabled wife being seen as easily divorced and dumped in a nursing home. In my view, Not Lonely is right to be skeptical about the nursing home bullshit, although somewhat narrow-minded in thinking it's ok for just the grown children to support their mom. Community supports, hello? This Prudence columnist should have called her out on this. Damn, we have to educate the advice columnists.

I also have a lot of questions about the wife not being interested in sex. This is third-hand news. The wife very well could be not interested in sex. Or, perhaps the husband is not interested in sex with her? Is it the disability? Or, are the husband and wife not clued into the many fulfilling ways sexuality can be expressed? What's up? If it's been 20 years since the relationship with the other woman started...???

I would really like to see more disability-positive discussion of dealing with marriage and disability and sexuality and extramarital relationships. AND I would like to see more discussion of the relationship issues LGBTQ people with disabilities face. I am not sure that FRIDA can advocate on moral discussions concerning relationships (for example, is the whole affair thing right or wrong?), but my feeling is we can and should advocate that there should be an arena for disability-positive discussion of these issues.

Some might ask why I would say FRIDA would hold off on "moral" discussions of relationships, when we have so obviously advocated on our position on topics like hysterectomy and euthanasia. Here is the bottom line: part of FRIDA's stated mission is "to spearhead social momentum towards real choice, respect and self-respect of women with disabilities." I think FRIDA is about disability rights, not morals.

When it is not clear that any person with a disability is able to make a choice in their lives, we have a problem with that. And if society views us as having limited choices, we have a problem with that too because it conditions people to take some of our choices away. A gray area is possible though...perhaps the stance that we are entitled to choice and decision-making is a moral position. Maybe believing that people with disabilities are PEOPLE, and that disability-positive education and dialogue for all is a human right, are moral positions too. But what I think we are about is basic rights---and one of our basic rights is to choose our values or morals.

Am I wandering around in my own head? Maybe. That letter is some food for thought, though.

Michigan Activists at Ashley X Debate Today

Today, Michigan youth disability rights activists fliered and participated in an event at Calvin College that featured Ashley X doctor Douglas Diekema as a featured speaker. Dr. Diekema spoke about the "Ashley Treatment" before an estimated crowd of 1000. The auditorium, estimated to hold 600, was full, and the remaining crowd was redirected into an overflow room.

FRIDA friends who represented reported that after speaking at length on the Ashley X case, Dr. Diekema only answered two questions. The first was from someone we don't know who wanted to know how many people were on the Seattle Children's institutional review board. The second question, from Joe Stramondo (who is clearly a power chair user), basically dealt with whether Ashley's parents seriously considered community supports.

Many parents and advocates attended this event. We are awaiting further write-ups from those who attended and will link as they become available. In the meantime, visit the following news story:

http://www.mlive.com/news/index.ssf/2008/01/debating_ashleys_treatement.html

GO FRIDA FIGHTERS!

Katie Thorpe's Womb Saved Thanks to Disability Activists (title FRIDA's)

From today's Daily Mail in the UK:
http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=508814&in_page_id=1774&ICO=HEALTH&ICL=TOPART

Doctors turned down mother's request to remove disabled daughter's womb 'because of charity backlash'
Last updated at 12:21pm on 17th January 2008

A mother who asked to have her disabled daughter's womb removed said a negative backlash from charities has caused doctors to refuse to operate.

In a landmark case Alison Thorpe, 45, asked for her 15-year-old daughter Katie to undergo drastic surgery to prevent her from the "pain, discomfort and indignity" of menstruation.

The debate sparked fierce criticism by groups such as Scope which said Katie should not be sterilised because it would be "very painful and traumatic" and was "not medically necessary".

Ms Thorpe, a mother-of-two from Billericay in Essex, has been told that doctors at the Mid Essex Hospital Services NHS Trust have refused to consider operating without a "clinical reason".

Ms Thorpe said: "They have said the would not consider putting the plan in place at the moment and when Katie starts her period they would be prepared to consider if there is any clinical reason for the procedure.

"Which means that if and when Katie does start her periods she could endure months and months of pain and discomfort before anything is done."

Katie Thorpe, 15, suffers from severe cerebral palsy and needs round the clock care. The terminal condition has left her unable to walk or talk, confined to a wheelchair and double incontinent.

Katie's plight echos the controversial case of nine-year-old Ashley X in America who underwent breast bud removal and hormone treatment to keep her in a child like state, small and manageable for her parents who care for her.

Ms Thorpe, who lives with her 12-year-old daughter Melissa and 52-year-old partner Peter Reynolds, said: "The only opposition has been from disabled rights movements but I would say to them 'Come and spend a week with me, walk in my shoes'.

"I've spent 15 years with my daughter, as a mother who loves her dearly I am trying to do the best I can for her."

She added: "I'm hoping common sense will prevail and the Trust will not be swayed by the disability rights groups.

"I think the Trust has bowed down to what they perceived to be public opinion, that is my personal belief. I have had overwhelming support from the public, both able bodied and disabled people.

"I feel the trust misread the so-called lack of support from the minority, groups such as Scope.

"I have not had any contact with any (disability) organisation, they do not know me or Katie. They have not provided any support or help for us as a family.

"I am not surprised by what they said but in in the way they said it. They have not been made aware of any of the facts in his case, they made up their mind before hearing the other side of the story, without referring to us.

"I don't want to take away disable people's rights, I want to give them choice."

Doctors initially suggested contraceptive pills and injections to stop Katie's periods starting but Ms Thorpe ruled them out because of the risk of the wheelchair-bound daughter suffering from thrombosis.

Ms Thorpe has been liaising with consultant gynecologist Phil Robarts from St John's Hospital in Chelmsford and was originally hopeful they would operate on her daughter to remove her womb and her appendix because she feared Katie would not be able to tell anyone if she suffered an appendicitis.

She said: "It was an agonising decision to make, as with every decision, I questioned myself endlessly 'Am I doing the right thing?'.

"It is a decision I made probably about two years ago when she was 12 or 13-years-old. It's taken me about 13 years to consider it, to consider the pros and cons, the advantages and the disadvantages.

"It (the operation) would prevent her going through the mood swings, the discomfort and the indignity of it all.

"If Katie had stomach cramps she wouldn't be able to say 'Mum I've got really bad period pains' she would be in pain and we wouldn't know.

"There would obviously be short term discomfort, as with any operation, but we could manage that with painkillers. The short term discomfort would be more than outweighed by months or even years without pain."

Despite being "disappointed" by the decision she has written to the non-executive directors asking them to put a plan into place to operate as soon as Katie starts her periods.

She added: "It's one of those things, life with a disabled child is one long battle and this is just another step down the ladder."

"It was not unexpected. It means we move to stage two and carrying on fighting."

Karen McCarron's trial scheduled to begin Monday January 7

Below is the full article (January 4) by David Mercer from The Times (Munster, Indiana) about the trial of Karen McCarron (and some background about her case), which is set to begin this coming Monday, January 7. It is alleged that McCarron suffocated her three-year-old daughter, Katherine, who was autistic, with a plastic bag on May 13, 2006, because she "wanted a life without autism." A key question for jurors will be whether Mcarron was legally responsible for her actions or mentally ill at the time of the killing.

Mother charged in autistic daughter’s death headed to trial

Just days after she and her father moved back to the family home in Morton, Ill., from North Carolina in May 2006, 3-year-old Katherine McCarron was dead.

Police and prosecutors say the little girl’s mother - a physician who apparently was unable to cope with her daughter’s severe autism - suffocated her with a white plastic bag then tried to make it look like an accident.

Opening statements in McCarron’s trial are expected to begin Monday in Tazewell County Circuit Court in Pekin, just southwest of Peoria, where jurors could face a tough question: Was McCarron legally responsible for her actions or was she insane?

McCarron, who is charged with two counts of first-degree murder and has been free on bond since 2006, has been found mentally fit to stand trial. But a medical expert hired by her attorneys said McCarron was insane at the time of the killing. McCarron, who faces up to 60 years in prison for each charge, has pleaded not guilty.

Much of the case could hinge on a videotaped confession that Karen McCarron gave on May 14, 2006, the day after her daughter’s death. Karen McCarron was being treated at OSF Saint Francis Medical Center in Peoria for her own attempted suicide.

On the hour-long tape, which a judge has said can be used in court when her trial begins next week, McCarron said she wanted “a life without autism."

“Autism left me hollow,” she said. “It seems that everything I tried to do didn’t help her. She was a tough nut to crack,” McCarron said.

Lawyers on both sides of the case either declined comment this week or did not return calls by The Associated Press seeking comment.

After her daughter was diagnosed with autism, Karen McCarron became well-known in a Peoria-area support group.

Dr. David Ayoub, a leading supporter of a controversial theory that mercury in early childhood vaccines causes the disease, said in 2006 interviews that he had occasionally talked with Karen McCarron after Katherine was diagnosed with autism.

“She was very dedicated to trying to get treatment for her daughter,” Ayoub told Copley News service in one of those interviews. “I’ve met with a lot of parents who are dealing with autistic children, and she was one of the most loving mothers.”

McCarron and her husband, Paul McCarron, decided in 2004 that Katherine needed better medical care and found a clinic in North Carolina that specialized in treating autism.

Paul McCarron, a Caterpillar Inc. engineer, transferred to a new job there and moved with the little girl. Karen McCarron, a pathologist who reportedly was unable to find a suitable job in North Carolina, stayed behind with the couple’s younger daughter, Emily.

The separation, however, proved difficult for the family, so Paul McCarron, planning to move back to Illinois in mid-2006, brought Katherine home in early May, according to news reports after Katherine’s death.

But on May 13, prosecutors say, Karen McCarron drove the little girl to her parents’ house, also in Morton, and suffocated her with a plastic bag. McCarron reportedly told police she’d taken Katherine for a drive to calm her after she couldn’t get the little girl to take a nap.

McCarron allegedly brought Katherine back home, carrying her past family members as if the girl was asleep, and laid her down in a bedroom. A while later, McCarron told family she couldn’t wake her daughter.

Emergency workers were called to the home to treat Katherine, who wasn’t breathing.
McCarron wasn’t a suspect, according to police, until they were called back to her house early the next day, after she tried to overdose on over-the-counter drugs.

Police said they found McCarron and her husband, who had returned from a business trip, hugging and crying. They say she’d just told him she killed Katherine.

Paul McCarron has since filed for divorce. Messages left for a Morton, Ill., phone listed for him were not returned.

Tazewell County State’s Attorney Stewart Umholtz called the death “tragic” in a 2006 interview with Copley News Service.

“It’s a terrible incident anytime a mother would be charged with murdering her child,” he said.

But the little girl’s her grandfather, Michael McCarron, said Karen McCarron didn’t lack for help in raising her daughter, whom he called happy and playful.

“This was not a question of there’s no place to turn, there’s no support,” Michael McCarron told the Chicago Tribune. “This was not a murder about autism.”

A service of the Associated Press(AP)

(h/t to Kristina Chew from Autism Vox, for keeping us up-to-date)

It's a New Year...Are We a New Wave?

Happy New Year, FRIDA Fighters! Good work to all who spoke out in 2007 against sexism and ableism! (And all the other types of bias too.) Even if all you did was read this blog every now and then, you educated yourself, and for that I applaud you. The schooling you get outside of school is some of the toughest larnin' you'll ever get.

As we begin the Gregorian New Year, a topic that's been brought up lately among the younger feminists I know is: what "Wave" are we? Feminism, to step into the history books for a tiny second, is often considered to have three "waves." The First Wave was the suffragettes around the beginning of the last century. The Second Wave was the feminists of the 60s and 70s. And the Third Wave are the newer feminists who come from different races and different backgrounds and have a great spectrum of issue and identity concerns.

So, do feminists in the disability rights movement have some kind of parallel "Wave" categorization? Not officially. Not necessarily. In fact, I think trying to fit disabled women into "Wave" groupings is not really appropriate given the great range of disability rights activities and philosophies. Around 28.5 million women in the US are estimated to have a disability of some kind, but bear in mind that not every woman has a feminist consciousness, and not every disabled woman considers herself to have a disability. This number does not count the vast numbers of nondisabled women who live with or are related to a person with a disability.

I do strongly feel that younger women feminists today have the opportunity to learn from an older generation of disabled feminists. This may be the closest way in which we identify with the Third Wave. That, and the fact that younger disabled feminists are concerned with a huge range of issues. However I think that most women with disabilities are largely disenfranchised from most feminist or even women's group, and this is something we should work to fix.

What do you readers think? Where is the disability rights movement in feminism and what are our "Waves?" I have lots more thoughts on the issue but would prefer at this time to start a forum discussion....

Happy New Thinking!

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.

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.

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.

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.

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.

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.

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.

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....

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.

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!

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