In Memoriam of Edith Rodriquez

Since Sharon's post (at this site, last Wednesday, June 20) about Edith Rodriquez, who died needlessly after her heart stopped in the emergency room of the Martin Luther King Jr. Harbor Hospital in L.A, California while police were wheeling her out on a suspected parole violation, all the while indifferent to her pleas for help for her severe abdominal pain, I have been checking the news daily for updates and responses to her death.

The questions that advocacy journalist Rosemarie Jackowski poses in her Memoriam to Edith are questions that most, if not all of us, have asked ourselves. Why did no one help her? Was this tragedy caused by the fact that she might not have had health insurance? Was the problem that she was sick while being Hispanic? Was this death by geography, by virtue of the fact that she was in the United States? Jackowski thinks so:

"Living in the U.S. can be dangerous to your health," she argues. "This is a country that puts profits before patients; capitalism before compassion."

In her condemnation of this tragedy, Jackowski's anger is directed not so much at the doctors, nurses and other medical personnel who were indifferent to Edith cries for help, as towards the system, a system that in Jackowski words "has lost any hint of humanity."

"Sadly, Edith is not alone. In the United Staes 18,000 die every year from lack of medical care. That is like a 9/11 every 60 days . It is worse that 9/11 because these are needless death that we are imposing on our own. These deaths will continue until there is a strong grassroots movement for a universal, single payer health care system."

Rafeal Azul also argues that the core of the problem is obscured by a single focus upon the indifference of singular individuals to Edith's cries for help. In his article, Death in Los Angeles hospital exposes social crisis in US, he points out that:

"Media attention has focused almost entirely on the reactions of the 911 operators, including the responses of an operator who treated with apparent contempt the pleadings of one caller who sought to get help to Rodriguez."

Yet our focus upon the actions of singular individuals, as shocking as those actions may be, may miss something more fundamental. His point is that:

"To stop at the actions of the individual operators or the hospital staff, however, serves to obscure the more fundamental issues involved. King-Harbor hospital is located in South Central LA, one of the poorest sections of the metropolis. The McCone Commission, appointed to report on the causes of the 1965 Watts riot, determined that lack of access to medical care was one of the main grievances of the 1.5 million residents of Watts, Willowbrook and Compton, which make up part of South Central. The hospital was something of a concession to residents and opened its doors in 1972. In its heyday, Martin Luther King Jr. Hospital (renamed King-Harbor only recently) was lauded for its world-class quality and for its many services to the community."

Unfortunately, however:

"... the social conditions that underlay the riots in the 1960s were not addressed, and this could not but have a profound impact on the hospital itself. In contrast with unemployment rates of 2 or 3 percent in Santa Monica or Orange County, South Central Los Angeles has double-digit unemployment—in some areas higher than 20 percent. Infant mortality in South Central—13 per 1,000 births—is the highest in California and twice the state average. A hospital in many ways concentrates within its doors the social ills in the community at large, magnifying these ills a hundredfold. Drug abuse, violent crime and gang shootings, the persistent and corrosive effects of poverty upon the physical health of a community, the flooding of emergency rooms by poor workers or unemployed residents unable to afford health insurance—all of this places great strains on the staff, which is invariably overworked and underpaid. Moreover, a hospital like King-Harbor will have continual difficulties trying to attract the most qualified staff. Those who can will often work elsewhere, in better-funded hospitals in more prosperous areas. Recent reports indicate that 60 percent of the nurses at the hospital failed parts of competency examinations. There are no doubt many extremely dedicated doctors and nurses at King-Harbor, as there are at any hospital, but this by itself is inadequate without the devotion of sufficient social resources."

Edith Rodriguez herself, is a product of the social and cultural problems endemic to the area:

"She had no steady job or address. She survived on odd-jobs and lived with relatives. In the coroner’s ruling, Rodriguez is described as a “quasi-transient” woman with a history of abusing drugs. There is evidence that she used methamphetamines, a highly addictive stimulant that is an increasing problem in the US. Like other patients of the hospital, she represented those that society had left behind."

He continues:

"It is not difficult to imagine a likely perspective of the hospital workers who refused to treat Rodriguez. Perhaps they were angered by her repeated visits. Perhaps they blamed her to some extent for her apparent drug problems, adopting an individualist approach to such social problems that is common in the US. Perhaps they did not quite believe her complaints of extreme pain. No doubt coarsened by the continual trauma of death that transpired within the hospital doors, for whatever reason there was no attempt to help Rodriguez as she suffered and ultimately died."

Although there is no excuse for the treatment that Edith received, it is imperative that we understand where it comes from. Only then can we work through these problems in order to change the future:

"The bureaucratic and Kafkaesque response to the working poor is not limited to a handful of overworked Los Angeles nurses or emergency dispatchers. Across this country the citizens of the inner cities or rural areas, the elderly, the mentally ill, and those battling addictions have often become invisible to overburdened and underfunded institutions that provide barely minimal service at the lowest possible cost. Individuals who work within these institutions can come at times to reflect the indifference, even hostility, that official society has for the lives of the broad mass of the people. Such was evidently the case with the 911 calls made in an attempt to get Rodriguez treatment when none was forthcoming at the hospital itself.

On the issue of the indifference to those who looked on around her:

"People are coarsened, but they are reflecting a coarsened society. To the extent that they may exhibit indifference, that they may lose for a period certain basic instincts of compassion—or these instincts may become weakened—it is a reflection of a more profound indifference, and sickness, in the social structure itself. Contemporary American society is characterized by enormous levels of social inequality. The vast majority of society’s resources are controlled by a small minority, directed toward the accumulation of profit and personal wealth, with only a few relatively small crumbs left for such essential social services as health care. From the standpoint of the ruling elite, people like Rodriguez are expendable.

Moreoever:

"Less directly, the continual barbarism of the American government must have an effect—the war in Iraq, Guantánamo Bay, Abu Ghraib. Particularly in the absence of an organized political opposition, these examples of indifference and contempt for human life on a grand scale, coupled by the relentless propaganda of the media, are bound to filter down into the consciousness of certain layers of the population."

Edith's case is simply one among many similar cases at King Harbor:

"Beginning in 2003, a series of reports in the Los Angeles Times shed light on substandard care that had led to the deaths of several patients, attributed to neglect and lack of training for nurses. Inspections by federal authorities in 2004 and 2006 resulted in the partial closure of the hospital, including the elimination of the trauma center. The hospital now has only 48 beds and is a hospital of last resort. Citizens of South Central dubbed it “killer King,” to be avoided by whoever has the transportation to go elsewhere. King-Harbor is typical of many other inner city hospitals, such as the notorious Greater Southeast hospital in Washington D.C. and Detroit’s Riverview, which are equally deficient ... The problems at King-Harbor are being used by the federal government to threaten a cut off of federal funding, threats that have been renewed after the death of Rodriguez. This will only further intensify the underlying social problems."

He concludes by noting:

"The media concern for Edith Rodriguez lasted only a few days. Networks and newspapers are already moving on to the next item."

But before moving on, here is a thoughtful post by A Female Physician about bystander indifference, also known as bystander effect, or bystander apathy, with some suggestions for breaking out of its cycle so as to change our response in the future.

In A Female Physician's words:

"What bothers me about the Edith Rodriguez case is that I easily could have been one of the bystanders in that hospital lobby and contributed to her death ... We all want to think we would have been the different ones ... we all imagine we would have bent down in concern toward Edith Rodriguez and at least tried to figure out what was going on, if not offer actual assistance. I think I would have done this, I hope I would have ... but I also think deep down we all know that it's easy for ANYONE to be swept into the middle of an inert crowd and stay there dumbly looking on."

While the medical profession failed Edith Rodriguez and those that loved her, egregiously, she admits:

"the only personal offering I can make at this point is a commitment not to rest smugly in the position of critic and judge, thinking, well, I would have seen her there, and I would have done something, I'm not blind. Sure I am. Or can be."

In her words:

"All I can honestly say is I would like to think I would have treated the situation differently. But I cannot say that I would surely have been immune to group blindness or inertia."

In her closing comments, her call to us, as I read it, is to acknowledge and work-through our own complicity in group apathy so as to change how we act in the future. If we do not acknowledge it and work through it, then we will simply repeat it:

"I think we need to learn to acknowledge our blind spots and make a promise to all patients," she suggests. "We don't always see well, but we will always work to see better."

Petition for the creation of a Disability Advisory Committee, Day 4

Signature count, day 4, 258

For a number of respondent's to the petition, the creation of a Disability Advisory Committee is tantamount to an ethical relationship between the medical community and people with disabilities. In the words of one respondent: "There are difficult decisions that face the medical community. Ethically speaking, all voices must be present for ethical and humane decisions to be made."

In other words, writes another, people with disabilities "have an awareness and understanding that cannot be duplicated, and the issues are literally life and death." Because
"disability awareness education among able-bodied people does NOT substitute for adequate representation of disabled individuals" then the representation of the particular perspective of people with disabilities within the structure of the AMA is tantamount to good ethical practice and to the possibility of an ethical relationship beween them.

I am reminded of the recent investigation of the "Ashley Treatment" by the Washington Protection and Advocacy System (WPAS), which found that the sterilization of Ashley was "conducted in violation of Washington State law." According to the WPAS's report, the violations appear to have occurred as a result of a "lack of policies at Children's Hospital regarding the sterilization of minors with developmental disabilities," and also because there were "insufficient internal controls" at the hospital "to ensure that Ashley's independent legal interests were protected." So as to protect the rights of children with developmental disabilities for whom the "Ashley Treatment," or other growth attenuation treatments, may be sought in the future, it recommended, amongst other measures, that the hospital include a disability rights advocate on its ethics committee. In other words, the representation of the disability rights perspective of a person with disabilities on the hospital ethics committee was tantamount to the protection of Ashley's human rights. And it is tantamount to protection of the human rights of people with disabilities in the future.

For one of the petition respondent's, it is imperative that the AMA create a Disability Advisory Committee because "doctors need all the data they can get before making life changing decisions." The case of "Ashley X" is but one example that this is so.

Petition for the Creation of Disability Advisory Committee


The signature count for the petition calling for the creation of an AMA Disability Advisory Committee is presently 178 and climbing quickly. It is particularly striking and encouraging to find such broad-based support for its creation. Here are some of their comments and viewpoints:



. "It is all about respect for humankind and believing all peoples should have a say."

. "please include people with disabilities on your ethics commitees; they have awareness and understanding that cannot be duplicated ... "

. "Please support this bill as we need certified interpreters to communicate with hearing people."

. "Disability awareness education among able-bodied individuals does NOT substitute for adequate representation of disabled individuals ..."

. "It's not too late to start a new history of the relationship between people with disabilities and the medical community."

. "Doctors need all the data they can get before making life changing decisions."

. "A Disability Advisory Committee is needed to promote the rights of persons with disabilities (PWDs) and help unknowledgeable doctors thru the process of providing quality care, advice, and information with options, alternatives for all range of disabilities and treatments."

. "To be surgically casted and physically altered for the convenience of others should happen to no one. The Disability Advisory Committee within the AMA is sorely needed to ensure something like this does not happen again."

. "The rights of people with disabilities are being violated regularly by medical professionals. The AMA needs a vehicle to hear from the disability community."

. "Autistic with VATER Association, chronic fatigue, fibromyalgia, severe asthma - the views/assumptions of parents/doctors about my life do NOT represent my reality, only other disabled people's experience can."

. "A Disability Advisory Committee is desparately needed. Too many persons with disabilities can't receive decent medical care due to the inaccessibility found beyond the reserved parking lot and automatic doors. Communication is a big barrier ..."

. "The disability community needs you to hear their voices. At any time you or a loved one can become a member of the community and, if you don't understand now, you will understand."

. "An open and ongoing dialogue between the leading physician organization and the disability community is long overdue to address years of medical provider ignorance and unjust power imbalances ... "

. "We need to treat people with disabilities like PEOPLE ..."

. "Nothing about us without Us!"

. "Medical doctors do not know because they are not taught that most of their assumptions . about people with disabilities are based more on societal fears and stereotypes than fact ... Do no more harm."

. "What better way to serve your clients that to hear their "first voice.""

. "We need someone to represent us (people with disabilities) on your board not just people with medical knowledge but people that know what it is like to live with a disability."

. "As a medical writer who is now legally blind (yet still active full-time) I am perhaps more aware than most how easy it is to misunderstand another person's situation when you have nothing but intuition to go on."

. "Establishing an AMA Disability Advisory Committee is not only appropriate, it is a win-win situation for both the AMA and the disability community."

. "This is a long overdue step. The AMA truly needs the counsel of people with disabilities, who are a minority with legally protected civil rights ... It is critical that the AMA understands and incorporates the advice and counsel of the disability leaders so that the organization can give guidance to and better lead its members on issues pertaining to disability.:

. "Such a committee MUST, not should, exist in every medical professional organization in America, in order to protect the rights of people with disabilities and allow medical professionals to fully serve human beings fairly. A Disability Advisory Committee needs to happen TODAY."

Remembering Edith Isabel Rodriguez

On May 9, 2007 Edith Isabel Rodriguez, a struggling, uninsured, 43 year old mother of three died as police wheeled her to their car after an L.A. hospital ignored her bleeding, her cries of pain, and her pleas for help. Responding to a “disturbance in the lobby” police arrived at the hospital and took Ms Rodriguez into custody for a “suspected” parole violation. “Thanks a lot officers,” a nurse is reported to have said to the police as they wheeled Ms. Rodriguez out of the hospital, apparently still ignoring the dying woman the hospital staff labeled a “complainer”.

“It’s as though she was invisible,” her boyfriend Jose said.

But Edith Rodriguez was not invisible. She did not go gently into the night. Edith fought for the health care she needed until her dying moments. She visited the hospital on three separate occasions the days before her death, each time complaining of abdominal pain and each time to be released without a definitive diagnosis. Still, on the day she died from her untreated bowel perforation, Rodriguez returned to the hospital one more time, demanding and pleading for medical treatment.

Edith Rodriguez lived with various family members. Her sister who would make tamales for the fundraiser to help pay for Edith’s funeral costs, described her as a caring woman, someone who would give the shirt off her back to help others. She did not deserve to spend the last 45 minutes of her life in an emergency room lobby, vomiting blood, curled up on the floor in pain and crying as staff casually walked past her and as a janitor mopped the floor around her broken, bleeding body.

Why did the hospital and its staff betray Edith Rodriguez? What caused everyone in her presence, except her boyfriend and one bystander, to turn their back on her during the moments she was most vulnerable; when she needed help the most? Was she seen as poor and undeserving? Was she seen as hysterical, her pained bleeding body in a fetal position on the floor simply a ruse? Or was she an intolerable reminder of this medical systems failure?

Edith Rodriguez resisted with all her might yet ultimately she was overpowered and effectively pushed into her grave by an uncaring system; a hospital that denied treatment instead of fulfilling their mission to provide treatment. Her family, her friends, her community, we have all have been robbed of the life of Edith Rodriguez. We cannot accept her hastened death. We cannot forget.

In memory of Edith Rodriguez, we must continue with ever-increasing urgency the fight to ensure non-discriminatory health care for all. We must return and preserve hospitals as a safe harbor, a place of healing and care that values equally all members of our national community including people who are ill, disabled, poor, uninsured, underinsured, elderly, of color, immigrants, and all of us holding vulnerable identities.

Edith Isabel Rodriguez IS someone to remember.
***********

For more information, I have included links to 2 stories from the L.A. Times:

How a hospital death became a cause celebre
videotape and two 911 calls cast light on a case that might've been ignored.
By Charles Ornstein
Times Staff Writer
June 15 2007

It might have gone down as the death of a "quasi-transient" woman with a history of abusing drugs. That's how the May 9 death of Edith Isabel Rodriguez was initially reported to the Los Angeles County coroner's office. The complete article can be viewed at: http://www.latimes.com/news/local/la-me-king15jun15,1,633441.story?coll=la-headlines-california

Tale of last 90 minutes of woman's life
County officials express dismay at the events surrounding the recent controversial death at King-Harbor hospital. One nurse has resigned.
By Charles Ornstein
Times Staff Writer
May 20 2007
In the emergency room at Martin Luther King Jr.-Harbor Hospital, Edith Isabel Rodriguez was seen as a complainer. The complete article can be viewed at: http://www.latimes.com/news/local/la-me-king20may20,0,6057993.story?coll=la-home-center

SPECIAL NOTE ON SUNDAY'S ACTION

I erred on the address when I originally posted. The correct address is 720 S. Michigan, not N. Michigan. Here it is again:

720 S. Michigan, Chicago Hilton!!!!

Do NOT go to the wrong address!!!!

Hope to see some of ya campers there. I apologize for the address problem.

Amber

Visiting the AMA This Sunday: Come With Us!

Dear all, especially if you live anywhere near Chicago,

This Sunday, our coalition is going to go to the Hilton where the AMA is having its annual meeting. We plan to flier the AMA outside and see how they respond as we ask for them to set up a Disability Advisory Committee. We encourage anyone who is interested to come. This will be a peaceful educational event to test the waters and make our people available to answer any questions on disability that AMA members may have. Please please please come if you are available. So many of you are terrific advocates. We encourage doctors to come talk to us Sunday too.

For those of you who live out of the area, please alert any of your Chicago area allies to this event. I have pasted the text of the flier below.

See you Sunday! Come be with us, in solidarity. We need ya!
FRIDA

PS: There are popsicles involved....

*******This weekend, the American Medical Association is in town at the Chicago Hilton! Hundreds of doctors are meeting to conduct AMA business. Let’s go tell them why they need to hear from people with disabilities!

It’s People with Disabilities Power Time!
Join FRIDA, ADAPT and Not Dead Yet in our AMA Rally!

Where: Chicago Hilton, 720 S. Michigan (meet us at the corner of Michigan and Balbo)

When: Sunday, June 24, 2007

Time: 11:30 am to 3:30 pm

What We Want: We want to ask the AMA to form a Disability Advisory Committee (DAC). We need to educate AMA members and the public about why we need a DAC and ask them to partner with us to set one up.

Don’t forget to bring: water, sunscreen, a hat, snacks. It will be warm, so make sure to stay hydrated and energized. We will provide some POPSICLES and there is shade under the trees across the street from the Hilton.

Questions? E-mail Amber at ambity@aol.com.

Sign Petition for AMA Disability Advisory Committee!

It's here:

http://www.gopetition.com/petitions/creation-of-an-ama-disability-advisory-committee.html

In order to demonstrate to members of the AMA and the medical community at large that a Disability Advisory Committee is a logical and necessary step towards full partnership between consumers and medical service providers, we ask that our community, our allies, and yes! doctors sign this petition.

An AMA Disability Advisory Committee, if it were to be set up as a true partnership between advocates with disabilities and medical professionals, would be a historic first, and hopefully an example for other medical professional organizations to follow.

We in FRIDA know that doctors are concerned about their patients and work hard to care for them, but WE are concerned that doctors are not fully aware of how to work with patients with disabilities and that human rights are being left aside in the name of: benevolent negligence, paternalism, ableism, fear, systemic oppression... Only TOGETHER can we work to educate ourselves about these problems and actively pave a new road for medical progress.

There is much that we can DO. We can educate on awareness and sensitivity. We can advocate for better federal, state and industry policy. We can standardize ethics trainings. We can make hospitals and other medical facilities accessible. We can recognize that what people really want is to choose their lifestyles for themselves...live where they like, move about as they like, socialize with their preferred friends. There are concrete steps that we can take to get out of this HOLE of non-choice, non-voice, non-partnership that exists today.

If you are concerned, please take a moment to sign this petition and speak with any AMA members you may know to explain why we ALL need an AMA Disability Advisory Committee.

FRIDA

Forwarded on beheald of Linda Edwards

Seattle Post Intelligencer, June 15 2007
Opinion
The other story from a 'Pillow Angel' Been there. Done that. Preferred to grow.
By ANNE MCDONALD GUEST COLUMNIST

Three years ago, a 6-year-old Seattle girl called Ashley, who had severe disabilities, was, at her parents' request, given a medical treatment called "growth attenuation" to prevent her growing. She had her uterus removed, had surgery on her breasts so they would not develop and was given hormone treatment. She is now known by the nickname her parents gave her -- Pillow Angel. The case of Ashley hit the media in January after publication of an article in a medical journal about her treatment. It reappeared in the news recently because of the admission by Children's Hospital and Regional Medical Center that the procedures its doctors had performed to stop Ashley from growing and reaching sexual maturity violated state law. In Canada (as in Australia), a child can be sterilized only with the consent of a court. At the time of the initial publicity about growth attenuation, Ashley's parents wrote on their blog: "In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers."I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley's. Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damageat the time of my breech birth. Like Ashley, I can't walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne,Australia. As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk. Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, "Been there. Done that. Didn't like it. Preferred to grow." Unlike Ashley, my growth was "attenuated" not by medical intervention but by medical neglect. My growth stopped because I was starved. St. Nicholas offered little food and little time to eat it -- each staff member had 10 children with severe disabilities to feed in an hour. That was the roster set by the state and acceptedby the medical profession. Consequently my growth stopped shortly after admission.When I turned 18, I weighed only 35 pounds. I hadn't developed breasts or menstruated. I was 42 inches tall. My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years. In the ultimate Catch-22, the hospital doctors told the Supreme Court that my small stature was evidence of my profound mental retardation. I've learned the hard way that not everything doctors say should be taken at face value. After I left the institution, an X-ray showed that I had a bone age of about 6, a growth delay almost unheard of in an 18-year-old in the developed world. I was not only tiny but lacked any secondary sexual characteristics (a significant difference from people with naturally small stature). I was a legal adult, but I couldn't see over a bar, much less convince anyone to serve me a drink. I didn't see small stature as desirable. My new doctors said that presumably I had the growth potential of a 6-year-old, so my new caregivers and I worked on increasing my size. My contribution was to eat everything I was offered. It worked. I started growing immediately, reaching a final height of 5 feet and weight of 120 pounds. That is, I grew 18 inches after the age of 18. Along the way I lost my milk teeth and reached puberty. At the age of 19, I attended school for the first time, eventually graduating from university with majors in philosophy of science and fine arts. "Annie's Coming Out," the book about my experiences that I wrote with my teacher, was made into a movie (Best Film, Australian Film Institute Awards, 1984.) Unlike Ashley, I'm now an ordinary height and weight -- but I don't get left out, nonetheless. Though I still can't walk, talk or feed myself, I'm an enthusiastic traveler. My size has never got in the way, though my hip flask of Bundy rum often causes alarm at airport security. I love New York for its galleries, its shops and its theaters; hearing Placido Domingo at the Met was one of the highlights of mylife. Interestingly, Ashley is also reported as enjoying opera -- maybe it goes with the turf. Many otherwise reasonable people think that growth attenuation was an appropriate treatment for Ashley. In an Op-Ed piece in The New York Times, for example, moral philosopher Peter Singer wrote: " ... there is the issue of treating Ashley withdignity. ... But why should dignity always go together with species membership, no matter what the characteristics of the individual may be? ... Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families."Ironically, I'm a friend of Peter's, and I've discussed ethics and disability with him previously. Despite this, he obviously didn't call me to mind when he wrote about Ashley.This may be because Ashley is described as having static encephalopathy, a rather uncommon name for a rather common condition. Static encephalopathy just means "brain damage which isn't going to get worse." It's occasionally used as a euphemism for brain damage caused by maternal intoxication, but the most common form of the condition is cerebral palsy unrelated to maternal intoxication. Ashley and I both have cerebral palsy. Ashley's doctors may have used the term static encephalopathy to avoid the outcry that would have followed if people realized that it was being suggested that girls with cerebral palsy should have surgery to stunt their growth and prevent puberty. When Singer wrote that, "Ashley is 9, but her mental age has never progressed beyond that of a 3-month-old. She cannot walk, talk, hold a toy or change her position in bed. Her parents are not sure she recognizes them. She is expected to have a normal lifespan, but her mental condition will never improve," he has accepted the doctors' eyeball assessment of Ashley without asking the obvious questions. What was their assessment based on? Has Ashley ever been offered a way of showing that she knows more than a 3-month-old baby? Only someone like me who has lain in a cot year after year hoping that someone would give her a chance can know the horror of being treated as if you were totally without conscious thought. Given that Ashley's surgery is irreversible, I can only offer sympathy to her and her parents. For her sake, I hope she does not understand what has happened to her; but I'm afraid she probably does. As one who knows what it's like to be infantilized because I was the size of a 4-year-old at age 18, I don't recommend it. My ongoing concern is the readiness with which Ashley's parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement. Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height. The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. An entire new discipline of non-speech communication has developed since I was born in1961, and there are now literally hundreds of non-speech communication strategies available. Once communication is established, education and assessment can follow,in the usual way. No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence. Ashley's condemned to be a Peter Pan and never grow, but it's not too late for her to learn to communicate. It's profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own.
Anne McDonald is a writer and activist for the disabled

Sarah James Rogers. Poor, black, and deemed "unpredictable", they removed her uterus. The state ended up saying they were sorry, but actions speak louder than words and Mrs. Rogers died without evidence of the state's sincerity.

The state apologized but what about the medical establishment? Have doctors apologized for their role in eugenics programs? Or are they too waiting, hoping to bury this piece of their field's history along with the aging victims?

How many times have our doctors betrayed us? How many women categorized as "inferior" have had our wombs cut from our bodies and discarded along with our dreams of motherhood?

No, we must not forget Sarah James Rogers, the thousands of women who like Sarah have been given "no-choice" in reproductive decisions, and the young women of today who are still at risk of this kind of medical abuse and must fight to keep their reproductive organs intact.

Which feminist position will step forward and embrace our long-neglected group of marginalized women: women with disabilities?

Forwarded on behalf of Linda Edwards

http://wilmingtonjournal.blackpressusa.com/News/Article/Article.asp?NewsID=79499&sID=4

SARAH'S STORY: SHE DIED BEFORE THE STATE WOULD ''DO THE RIGHT THING'',
WEEK OF JUNE 7-13, 2007
by CASH MICHAELS
The Wilmington Journal
Originally posted 6/8/2007

Critics say state of North Carolina hopes sterilization victims die off.

You may not have heard of her, but an important person in North Carolina history died two weeks ago. Sarah James Rogers, 73, was one of several hundred people waiting for the state of North Carolina to “apologize by doing the right thing.” Now, if it ever happens, she will never see it. It all started in 1949. Sarah Lilly James was a 15-year-old Black teenager growing up in rural Brunswick County. One of ten children of a poor farming family, young Sarah was not a happy child.For years Sarah was rebellious, got into trouble and admittedly couldn’t get along with anyone, including her parents or siblings.“It was rough,” she would say years later.Henry and Sarah James, her parents, had had enough, and two years earlier had shipped young Sarah off to a state reform school in Kinston. While there, the Jameses made the fateful decision to allow the state to “fix” their daughter so that she could never have children.“High temper, uncontrollable, unpredictable behavior” is the way Ruth Patterson, superintendent of Public Welfare for Brunswick County described young Sarah in her August 11, 1949 recommendation to the state Eugenics Board, the agency that decided for over forty years which poor women in the state, because they were deemed to be “feebleminded, mentally retarded, insane or epileptic,” would be sterilized. “Eugenics” was a widely accepted form of population control of females, and even some males, by government, of poor and undesirable groups. While mental disease was used as an excuse for sterilization, poor females who just exhibited what some considered socially unacceptable behavior, like promiscuity, usually found themselves put under the knife.The General Assembly created the five-member Eugenics Board in 1933 to review and approve sterilization cases that were “in the best interest of the individual’s mental, moral, or physical health” and “the public good.”North Carolina began the practice in 1929, pulling the plug in 1974, long after other states had already done so.From California to Virginia, with the legal permission of no less than the US Supreme Court, approximately 60,000 government sanctioned involuntary sterilizations were performed.Young Sarah James was one of them.“Emotionally, this girl is unstable and is extremely aggressive,” Supt. Patterson went on in her report to the NC Eugenic Board. A doctor who examined young Sarah described her as “mentally deficient [but] physically adequate.”Patterson noted that Sarah, after given the Stanford-Binet test – a standardized intelligence evaluation test (IQ test) that at the time was not reviewed for ethnic or class bias - failed it with a 68 the first time, and a 62 the second time, rating her with an “inferior mentality” on the intelligence scale.Both parents, at the direction of a county investigator, signed the approval forms for the operation. The report was so damming, a hearing was never held.The operation on the rebellious Black teenager, one of thousands performed on poor Black and white young females across the state, was performed at Dozier Memorial Hospital in Southport.“They told me it was to remove an appendix,” Sarah said years later.It wouldn’t be until 1954 after Sarah was married, that doctors finally told her why she couldn’t conceive.
“I felt terrible. I still feel bad,” a tearful Sarah James Rogers told The Wilmington Journal in an August 2005 interview. Three years earlier, after a scathing Winston-Salem Journal 2002 expose of the state’s long forgotten involuntary sterilization program, Gov. Mike Easley formally apologized to the survivors of the mandatory sterilization program, and promised that the state would find ways to make amends.With that, North Carolina became the first of 33 states that implemented a eugenics program, to aplogize. The governor’s special legislative task force’s recommendations outlined the need not only for compensation, but medical, educational and counseling assistance from the NC Dept. of Health and Human Services (NCDHHS).But in the four years hence, with the exception of the General Assembly officially repealing the law that originally authorized the forced sterilizations, there has been little movement towards addressing reparations for the survivors.“The practice of eugenics was a sad and regrettable chapter in the state’s history, and it must be one that is never repeated again,” Gov. Easley exclusively told The Wilmington Journal in a statement issued two years ago. “That is why I directed [NCDHHS] Secretary Carmen Hooker Odom to head a task force to closely examine the issue and make recommendations. Current state efforts are focused on identifying and locating survivors, and implementing the task force recommendations to provide health care and educational benefits to victims.”However, Secretary Odom has since left office. Bills addressing compensation and reparations have stalled in the General Assembly.“They don’t intend to start [anything],” Nial Cox Ramirez, 61, who was sterilized by the state in 1965 at age 18, and stood with Gov. Easley in 2003 as he signed the law repealing involuntary sterilizations, told The Wilmington Journal two years ago.“It’s just a show. They don’t want to do anything. I don’t think they want to do anything, because this is a long time, and nobody’s doing [anything].”“They’re just putting up a front, a screen.”Other eugenics victims – mostly black and white women in their 50s, 60s, 70s and 80s who, in the words of their legislative advocate Rep. Larry Womble [D-Forsyth], “Were born poor and female” – are also frustrated with the length of time it’s taking for state government to deal tangibly with their situations.Some of the victims, and their supporters, have said that the real reason the state is dragging its feet is because “they waiting for us all to die so that they won’t have to do anything.”“They really messed up my life,” Ernestine Moore, 54, told The Winston-Salem Journal in September 2002 from her home in Bridgeport, Connecticut. In 1965, Moore was involuntarily sterilized at the age of 14, one day after having her only child.“They owe me,” Sarah Rogers told The Wilmington Journal in 2005, admitting that while the state could never fully compensate her for the many years of hurt and pain she suffered, it needed to do something. Her right to bear children had been taken from her while still a child herself, without her consent, not because she was mentally diseased, which she wasn’t, but because her behavior troubled her family and the government.What Ms. Rogers did get from the state, with the help of The Wilmington Journal, were her medical records from 1949 detailing what happened to her, and why.From the notes and recommendations made by county officials, and approved by her parents, young Sarah was determined to be an undesirable.“They did it to a whole lot of girls in my neighborhood,” Arthur Rogers, Sarah’s husband, told The Wilmington Journal in August 2005. “They called it “getting it fixed” so they wouldn’t have a whole bunch of babies.”Since that interview, Sarah James Rogers had waited in vain for the state of North Carolina to “do the right thing.”Two weeks ago, she died of pneumonia. Her husband buried her on May 26.Ironically, had she lived another month, Sarah would have finally seen the state take another baby step towards resolution.On June 19, the NC Museum of History is scheduled unveil an exhibit chronicling the state-sponsored program that denied Sarah Rogers, and at least 7,600 other poor Black and white women, their right to bear children.“The purpose of the exhibit is to educate the public about North Carolina’s forced sterilization program, “ Barbara Pullen-Smith, director of the state’s Office of Minority Health and Health Disparities wrote in an email to colleagues, obtained by The Wilmington Journal last week. Pullen-Smith was not available for an interview at press time.“The exhibit documents the “ugly” history of the program and its impact throughout our state and the nation. The exhibit includes recorded messages from a few of the victims. Their compelling stories highlight their lifelong pain and shame. An interview with a former Eugenics Board member is recorded, case studies are summarized and responses from public officials are captured.”In the state Legislature, Rep. Larry Womble, the lawmaker who has championed the cause of mandated sterilized victims and supports the exhibit, is cautiously optimistic about his longheld bill to provide compensation to the survivors.After four years of not even a prayer under former House Speaker Jim Black, House Bill 296, in the House Appropriations Committee since February, is promised to get at least a hearing from House Speaker Joe Hackney, and committee co-chair H. M. “Mickey” Michaux.“This is the most that has happened with the bill in some time,” Womble, a Forsyth County Democrat, told The Wilmington Journal this week. “It wasn’t going anywhere under Speaker Black.”If ratified in it’s current form, HB296 (and its companion bill in the state Senate) would award all eligible claimants $50,000, in addition to providing “…appropriate health care coverage, counseling, and educational assistance to persons who receive compensation.”The bill also calls for $172,750,000 for the 2007-2008 fiscal year to fund the Eugenic Sterilization Compensation Fund, once the number of eugenics survivors are determined and located.But that’s the catch. What has the state done to both identify victims per their medical records, and then locate them? Because the program began in 1929, and continued on until well into the late 1970’s, many of the victims have since passed.Those who remain are in their 60’s, 70’s. 80’s and 90’s.Womble says several survivors have told him even though the state could never compensate them for the pain and suffering they’ve experienced through the years after finding out what was done to them, what little compensation they could get would at least be something.But the way the state has been dragging it’s feet on the issue since Gov. Mike Easley first apology, many of those survivors believe they might not live to see the day when the state financially owns up, even in part, for what it did. The survivors believe that state lawmakers are deliberately dragging their feet in hopes that as many of them die off as possible. Sarah Rogers certainly believed that before she died.

Forwarded on behalf of Linda Edwards.

Ragged Edge, 1997

Disabled women & suicide: Dying to be free?
by Barbara Waxman Fiduccia

Why are women dying to be free but men aren't? Because men have women to care for them. But women lose their family and social supports once they are categorized as non-breeders and are no longer a source of nurturance. They are discarded as socially useless and wind up in an earthbound limbo.

There is no such state as "terminal illness," only the status of life with a disability. But when a woman becomes disabled, she may be influenced to call herself "terminally ill" to justify suicidality. Once disabled, her daily life becomes medicalized, isolated and impoverished. The solutions offered to ease her predicament are medical treatment, cures -- and if those don't work, death.

When feminists contend that assisted suicide is a choice and a private matter, they are harboring a paternalistic notion of privacy. All women and girls face great dangers in private, which feminists are all too familiar with. Private family matters conceal incest, domestic violence, and female genital mutilation.

The sources of disabled women's difficulties, feminists should realize, almost always stem from isolation and poverty.

Disabled women who want to die are virtually always depressed and in despair. The majority have experienced some sort of violence, be it emotional, physical, sexual, or financial. This violence may also take the form of neglect. They are isolated from their families and their community. They are isolated from the essential treatment and resources they need.
The woman's community has abandoned these women, too. The political, social, and economic predicament of disabled women has been excluded from the feminist platform time and time again. By supporting the availability of assisted suicide, feminists are unwittingly sacrificing the protection of all women's lives.

There are two feminist arguments for assisted suicide. Both arguments exhibit the kind of "medical model" thinking that in other contexts feminists abhor.

One argument insists that the so-called "suffering" of people with disabilities or health problems places a "burden" upon unpaid female family members -- and that "ending" that "suffering" will lift the "burden". The other line of reasoning insists that legalizing assisted suicide will give women more power to control their own lives.

But the availability of assisted suicide supported by feminist organizations such as the National Organization for Women (and my friends over at the Los-Angeles based Center for Reproductive Law and Policy, who supported the 2 assisted-suicide cases decided by the U.S. Supreme Court this past summer) will not free women from the caregiver role, nor will assisted suicide extend a woman's autonomy and privacy in health care decision-making.

"Medical model" thinking defines women's problems as individual problems to be solved by medical treatment and cures. Small breasts get medically augmented, women's moods get medicated, and birth gets technology. Medical model proponents contend that a disabled person's suffering arises from physical pain, and that death is the answer to pain, isolation, and oppression.

But the minority model -- which feminism is founded on -- suggests that the sources of most difficulties faced by minority group members are in the social and political environments: a disabled person's suffering has more to do with depression, political oppression, and social isolation than any medical condition. Policy change is the answer -- but not the type of change advocated by proponents of assisted suicide.

Feminists have for decades been fighting for safe and affordable child care. Similarly, feminist activists should be joining disabled and senior activists in our political efforts. These efforts are to shift federal and state dollars away from institutions to long-term in-home assistance, provided by semi-professionals who provide personal services for extensively disabled individuals.

Every individual does have a right to control her own life. But in practice, the physician assisted suicide option has the potential of becoming a practice similar to the way sterilization has been performed on poor Black and Latina women after childbirth, who have been asked to sign a consent form for tubal ligation while they were in the throes of labor. Some disabled people are reporting being pressured to sign "do not resuscitate" (DNR) orders, directing physicians to withhold measures such as cardiopulmonary resuscitation or assistive ventilation.

Death is an odd liberation from depression, isolation, powerlessness, violence, and sexism. Feminist activists need to reject the eugenic thinking they've embraced. If they do not, I fear that the very women they regard as exploited will be those whose death warrants they will be co-signing under the banner of "choice."

Barbara Waxman Fiduccia writes frequently about issues of reproductive rights. A longer version of this article appeared recently in a Rehabilitation Institute of Chicago newsletter.

Here's an interesting feminist-disability (or disability-feminist, if you prefer) perspective on Kevorkian's crusade that was published in Ragged Edge magazine a few years ago.

Attempted Suicide, Completed
by Carol Cleigh
www.raggededgemagazine.com/0301/0301ft4.htm

FRIDA Members on Jack Kevorkian

Kevorkian’s back, making comments to the effect that he is the reincarnation of Thomas Jefferson and responding to disability right opposition by saying “Let the crippled people demonstrate.” FRIDA member Sharon Lamp was actually one of the Not Dead Yet protesters outside Kevorkian’s Southfield, Michigan, press conference on Tuesday, June 5. Hell, Dr. K, just for calling attention to your crackpot crap, Sharon Lamp’s a bigger heroine for human rights than you could ever be. (She’s a heroine in lots of other ways too, for those of you lucky enough to know her.)

So he’s back, he’s not supposed to kill anymore but he’ll keep advocating to euthanize folks. His kinda death? Well, I don’t want it, not if it’s getting in Dr. Creepy’s van, going out to the woods and letting him stick a needle up my arm. I don’t want any other kind of assisted suicide when actually what I might someday NEED is suicide counseling, knock on wood.

The Kevorkian release spurred an e-mail debate among some of us on the feminist disability side of euthanasia. We felt you might be interested in some of the thoughts, especially since we’ve heard NOTHING on this perspective since Kevorkian’s release. Bear in mind this is simply a stream of consciousness discussion.

Linda (Rochester, NY):

I've just seen a list of Jack Kevorkian's assisted suicides, and the vast majority of them are women - at least 70% of them. Many of them were not terminally ill. One of the women that he helped to die is Judith Curren - she was 42 and suffered from chronic fatigue syndrome. During the weeks before her suicide, she was assaulted by her husband. Perhaps this experience and her despair may help to explain why she wanted to end her life.

I am surprised that the gender element is missing from analyses and commentaries in the press. Arthur Caplan's commentary on Kevorkian's release is quite good, http://www.msnbc.msn.com/id/18948499/from/ET/ but he does not mention the gender bias. Perhaps that is because he is male and it does not occur to him. Why is it that more disabled and ill women want to die than men? Gender doesn't seem to part of the analysis in the press at all.

Apparently, the National Organization of Women, amongst other feminist organizations, support the availability of assisted suicide. But there are also feminist arguments against it. Here is the link to a good article that presents feminists argument for and against:
http://www.euthanasiaprocon.org/endangerwomen.html.

Sharon (Chicagoland, IL):

thanks for bringing this up linda. the gender element of jack's victims has almost always been ignored by the press and mainstream feminist groups. although very early on in kevorkian's killing spree a writer did pick up and this and put out an article "the woman problem" or "jack's woman problem" something like that. after this article came out jack began to show more gender diversity-but in the end:
71% of his victims were women
67% divorced, widowed, or single
72% experienced recent declines in health
75% showed no evidence of terminal illness!!
5 victims showed no signs of physical illness or impairment.

why have mainstream fem's ignored these facts? imo, in part, because mainstream fem's feel that exposing and further publicizing this info.
would jeopardize what has been successfully sold to liberals as a "right"; the right to "assisted suicide" (which is more meaningfully described as the 'right' to have a 3rd party involved in one's 'suicide')-without regard for the fact that this 'right' too easily becomes a "duty" for marginalized populations.

btw, i consider myself to be a liberal in many ways and it's not my intention to bash liberal ideology in general. this is just one of the areas where i feel strongly that liberals need to take a deeper and more comprehensive look at the issue.

Linda:

there is clearly a gender bias here, though I would not construe it, as the reporter seems to do, that jack has a "woman problem", nor would I construe it as jack "targets" disabled people. Rather what needs to be ascertained is if more women than men sought him out. And why did he assist more women than men to die. Did he see as many men patients as women patients? But also, what about assisted suicide more generally - are women more likely that men to generally seek out assisted suicide? Few feminist analyses have addressed this, though some earlier ones argue that women have different reasons from men for seeking assisted suicide, like poor pain relief, higher rate of poverty, higher incidence of depression, sexism, and domestic violence. One of the feminist arguments I read in favor of it said that "it is not clear that women are more likely than men to be euthanized or extended the means for physician-assisted suicide." But from what I have read, the opposite seems to be the case.

Sharon:

i do not have the stat's or reference to cite at the moment, but it is i think generally known that women are much more likely to "fail" in their suicide attempts and that women tend to attempt suicide as a cry for help while men are generally much more "successful" in their suicide attempts.

kevorkian did not recognize this in the women who approached him. all of the women who attempted suicide through kevorkian did die whereas it seems likely that had they not gone to kevorkian many would have gone on to receive suicide prevention treatment and continue on with their lives.

kevorkian has a thing about death. it's true that kevorkian did not start out using disabled people to advance this interest. the population that he was interested in earlier in his career was death row prisoners. he lobbied extensively in the state of california for the right to do live experimentation and organ harvesting on them. he was pretty much laughed out of the state and ostracized by the medical community. he was known as "dr. death" by his colleagues even then.

he then turned to another devalued population, disabled people (who i believe he sees as dying) where he was much more successful and popular in his cause. who even remembers that he actually removed organs from one of his disabled victims? like everything else he put his victims through, it didn't seem to matter to the public or the media or even the legal system when it was disabled people being victimized.

i agree that women have been found to have different reasons for attempting suicide than men. this is one of the aspects that i am most interested in regarding this topic so i hope to share more in this regard as i continue.

Amber (Chicago, IL):

To the whole exchange, I might add that the issue makes me ask the following:

What makes a woman's life worth living? Does it matter?
How did women find Kevorkian? Did the info path have a gender skew?
Why would women, or anyone, trust Kevorkian?
Also why would anyone trust some dude who says the things he does?
If Kevorkian were a woman, would this entire situation have been different? (I'm thinking back to some famous case in England where a nurse went around smothering babies)
Why don't we, feminists with disabilities, have more effective clout in combating Kevorkian and the rest of the euthanasia crowd?

***
And one final thought…if you haven’t seen the Euthanasia Blues YouTube video, watch it at http://www.youtube.com/watch?v=8Mwj8TUrbWg.

Readers are welcome to post their thoughts on this exchange.

Nursing Home Rapist Gets 25 Years

This is the latest in one of the cases that inspired FRIDA in 2005 to form a response to problems affecting women with disabilities.

Man sentenced in nursing home rape - Associated Press

Thu May 31, 2007 4:44 pm (PST)

WHEATON — A DuPage County judge sentenced a former nurse's aide to 25 years in prison Wednesday for raping and impregnating a nursing home resident who couldn't walk, talk or feed herself. The woman gave birth to the baby, and her mother is raising the baby in Rockford. The child is developmentally disabled, she says. The victim's mother has filed a lawsuit in Cook County seeking more than $1 million in damages from Alden Village, its management company, her daughter's former physician and 20-year-old Reynaldo Brucal Jr.

"This is beyond outrageous, frankly," Circuit Judge George Bakalis said in handing down the near-maximum punishment to Brucal Jr. "These people are disabled and we as a society have a responsibility to care and protect them and make sure that they are not harmed."Bakalis also ordered that Brucal, of Schaumburg, be deported to hisnative Philippines after his prison term.

Brucal changed his plea to guilty on the aggravated criminal sexual assault charge last year after DNA evidence showed that he was the father of the patient's infant daughter. The rape at the Alden Village Health Facility for Children and YoungAdults in Bloomingdale was only discovered in June 2005 after the then 23-year-old victim, who suffers from cerebral palsy, was found to be 28 weeks pregnant. The victim and her twin sister, who had lived at Alden Village since they were 10, then were removed from the facility. She gave birth by emergency C-section on July 20, 2005, at a Chicago hospital.

Bloomingdale police later took DNA samples from all the male workers at the nursing home and matched Brucal's to the infant. Brucal worked from September 2004 until his arrest Nov. 1, 2005, at Alden Village. The Illinois Department of Public Health fined Alden Village $10,000 for lacking oversight and mishandling its investigation of the incident.

http://www.rrstar.com/apps/pbcs.dll/article?Date=20070531&Category=NEWS10&ArtNo=105310104&SectionCat=NEWSNOW02&Template=printart

New Article on Ashley by William Peace

Check out this link to another article on Ashley by William Peace, who does a good job of pushing on the questions the disability community has been TRYING to ask....
http://www.informationliberation.com/?id=22195. Thanks to Linda from Rochester for bringing this article to FRIDA's attention.

Nothing is wrong with us. Society makes disability bad, and THAT we've got to change.

Amber

More on Emilio, and FRIDA's Work

In the interest of making sure people are aware of various viewpoints on the Emilio case, I would like to call your attention to the following post by Skylanda, a health care worker: http://news.myspace.com/politics/feminism/item/4323150. Thanks to Linda for bringing it to our attention.

I would like to clarify a few things about why FRIDA worked to support Emilio's mother's choice (other FRIDA members are welcome to post and correct or edit my comments). FRIDA is not in the business of judging health care workers and families who find themselves in very difficult situations like that of Emilio's. FRIDA *is* in the business of pointing out that there are some really big problems with the health care system as it impacts people with disabilities, as well as social attitudes about disability.

When people ask, "Who is FRIDA, anyway?", I want to reiterate, WE ARE WOMEN WITH DISABILITIES. We live the life of being oppressed because we are women and because we are disabled, and we HAVE to work against a health care system that keeps us powerless. To say that our voice is worth nothing in discussions that affect people with disabilities, without knowing who we are and what our experience is, is to really deliver a backhand slap. Would you say that people of color shouldn't talk about healthcare problems that affect people of color?

Who *is* FRIDA, anyway?

FRIDA is:

Women of color...black, white, Latina, Asian...
Women of varying incomes, poor to well-off
Women of all ages
Women with a high school diploma or special ed certificate
Women with graduate degrees
Women who are Deaf, low vision, wheelchair users, who have invisible disabilities and visible disabilities, who have the common experience of socially oppressive actions based on their disabilities
Women who are single, women who are married, women who are moms, women who love women, women who love men.
Women who became disabled late in life, women who have always been disabled, women who have disabilities so severe that lots of folk might say our lives aren't worth living...but they are.

Our allies include grassroots organizers and medical professionals across the United States.

We will never change anything about the health care system, and about incredibly difficult "futile care" situations, unless many different kinds of voices are heard by legislators, policy makers, medical professionals, the media and everyday people. To shut down some voices in the interests of others only hurts us all. Who is FRIDA to speak up about the broken system that made Emilio, his family and his doctors suffer? We are some among many...worldwide.

We do appreciate the many kinds of comments left on this blog, whether you agree with us or not. So please, do post if you're of a mind to.

Amber Smock

Against all odds Caterina Gonzales fought for her baby boy's right to be held, to smile, to be cherished and to be loved through out his short life. In the end she prevailed and Emilio lived his last moments in his mother's arms; safe, wanted, and loved. God bless Emilio and his mom.

Emilio Gonzales Passes Away, Saturday, May 19, 2007

Via Not Dead Yet, FRIDA has learned that Emilio Gonzales passed away at around 7 pm Saturday, May 19. He died of natural causes with no withdrawal or denial of treatment.

Emilio's mom has temporarily made arrangements for Emilio's funeral. If she can come up with $4500, the services will begin Monday night, with visitation continuing on Tuesday morning, and the Mass and burial will be Wednesday morning.

Catarina Gonzales and her family need help to cover the funeral expenses. Her sister, Dora Gonzales, is receiving donations for assistance. Jerri Ward, Catarina's attorney, is accepting donations payable to Dora Gonzales, and these gifts can be sent to Dora in care of Jerri Ward, Garlo Ward, PC, 505 East Huntland Drive, Suite 335, Austin, TX 78752. Gifts should be earmarked for Emilio's burial.

Texas Right to Life will also forward donations for funeral expenses. Contact Elizabeth Graham, Director, Texas Right to Life, 713 299 4297 cell, or send checks marked for Emilio's burial to 6776 Southwest Freeway Suite 430 Houston, Tx 77074.

We of FRIDA offer our sincere condolences to Emilio's family and are thankful that he was able to pass without being under denial of treatment. We hope that his mother finds comfort in thinking of the many disability rights allies, including many readers of this blog, who sought to aid in whatever ways they could.

We encourage you to leave your comments and thoughts on this website, or post on other websites, and most especially we encourage you to write your thoughts to your local papers to make sure that the nation thinks long and hard about why this family had to fight this fight with the State of Texas and the medical establishment.

FRIDA

News Story on the Ashley Symposium in Washington

http://thedaily.washington.edu/article/2007/5/17/bioethicsConferenceTacklesToughMedicalDecisions

Bioethics conference tackles tough medical decisions

She doesn’t have a last name. They call her "Ashley X" or even "Pillow Angel."

Case: Dr. Jack Kevorkian promoted physician-assisted suicide for suffering patients that wanted to end their lives. Verdict: Kevorkian was tried many times for assisting with suicides. He was charged in March 1999 and is currently in jail. However, Oregon’s 1994 Death with Dignity Act supported physician-assisted suicide in certain circumstances.

Case: Tirhas was an illegal immigrant from Eritrea that was diagnosed terminally ill once cancer had spread to her lungs. Verdict: She was removed from a respirator in Dec. 2005, despite her family’s disagreement with Texas’ "Advance Directives Act" that allows hospitals remove terminally ill individuals.

Case: Like the prominent Terri Schiavo case in 2005, Nancy Beth Cruzan was left in a vegetative state after a car accident. Her family wanted the feeding tube removed and fought as far as the Supreme Court. Verdict: The court allowed her family to remove the feeding tube, and she died in Dec. 1990.

Case: Many argue medical marijuana provides therapeutic treatment to individuals in substantial pain, particularly chemotherapy patients. Verdict: Medical marijuana is legal in 11 states, including Washington, Oregon and California.

Case: Terri Schiavo suffered brain damage and became dependent on a feeding tube for 15 years. Her husband, Michael, wanted to remove the feeding tube and fought many legal battles with her parents. Verdict: The tube was removed March 2005 after a verdict by the U.S. Supreme Court.

Related Links
See Ashley's parents' persepective on http://ashleytreatment.spaces.live.com/blog/

Yesterday, though, people from around the nation visited the UW because of this young girl, to discuss the issue of limiting growth in children with severe disabilities. The forum was an all-day conference held in the Moot Courtroom of William H. Gates Hall.

Ashley’s case sparked discussions about disability after her parents opted to give her what has been dubbed the "Ashley Treatment" when she was 6 years old. Now, Ashley is 9-and-a-half. The treatment included giving Ashley, who has a severe brain injury that keeps her in an infant-like state, hormones to stunt her growth, keeping her body small. Doctors also removed her uterus and breast buds to prevent the discomfort of menstrual cramps and breast development.

An ethics panel at the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital, where the surgeries were performed, considered the benefits and risks of the hysterectomy, removal of breast buds and hormone treatment before the surgeries took place.

"Because of the novel nature of the request and need to really make sure we were looking at the many aspects of the parents’ request, it was obvious we needed to get a group of people," said Doug Diekema, director of education at the Katz Center and leader of the ethics committee.

Ashley and her parents played a significant role in the decisions of panelists, Diekema said. "Ashley’s parents were devoted to her," Diekema said. "[Their] primary purpose was to make her life as good as it could have been. They desperately wanted to keep her as a part of their family and didn’t see [a] life without Ashley in their home."

Diekema said Ashley’s parents considered several options before choosing the treatment.

"They were very familiar with options such as outside help or [using] lifts," he said. "[They] didn’t feel there was an option that [would] be more acceptable."

Diekema said many committee members came to the discussion with a bias against the treatment.

"It’s fair to say that everybody in that room probably walked into the room thinking, ‘We’re probably going to have to say no to the family,’" he said. "At the end of the meeting, it’s fair to say that everybody in that room was in agreement that … this really would probably benefit this little girl."

According to a blog Ashley’s parents have been updating since the surgery, they hoped this treatment would increase their daughter’s comfort, while making it easier for them to care for her and include her in family activities.

Because Ashley’s family has a history of breast cancer, removing her breast buds would evade the young girl’s chance of getting cancer and avoid any discomfort associated with the chest strap she uses, her parents said. The hysterectomy would prevent Ashley from experiencing painful menstruation and avoid the possibility of pregnancy if she were to be sexually abused.

Some, however, feel the surgeries were unwarranted.

"When I first heard about the Ashley treatment, I was devastated for the advocacy movement as a whole," said Corinna Fale, a representative from People First, a disability advocacy group. "I was devastated as a woman. If this can happen, what else can they do? Are they going to be able to play God and do some other procedures down the line?"

Many are concerned this treatment will become a precedent for parents who have kids with disabilities.

"It’s the Pandora’s box opening up," said Emily Rogers, a representative from The Arc of Washington State, a disability advocacy group. "We need to preserve the dignity and respect of people with disabilities as valued participants in our communities. What will be
happening 20 years down the road? How will people be looked at … at that point?"

David Woodrum, UW professor of pediatrics and clinical director of the Katz Center, was closely involved with Ashley and her family throughout the decision-making process and surgeries. He said Ashley’s story should be taken as a single case, not as a precedent for future cases.

"Do I think the Ashley treatment should become standard?" he said. "No. I think this is a unique situation, and I don’t think it has created a slippery slope."

The ethics committee did not consider Ashley’s case with the expectation of it setting an example for the future, Diekema said.

"No one in that room felt this was going to have policy implications and that just because we said ‘yes’ to Ashley would mean we’d say ‘yes’ to anyone," he said.

Parents of children with disabilities were at the conference to represent both sides of the argument.

Sandy Walker, who has three children with varying levels of disability, feels the Ashley treatment would help her better care for her daughter, Jessica.

Walker said Jessica enjoys activities such as going down the slide with Walker, visiting the beach and swimming, all of which have become difficult or impossible as Jessica has grown.
However, Walker said there is a fine line.

"It’s very difficult to distinguish between what the benefit to the children is and what the ease of the parent is," she said.

It’s important for parents to consider what will happen when they’re gone before making a decision of this magnitude, Rogers said.

"Our focus should be squarely on Ashley and people with disabilities, so that the quality of life will still exist in 20 years or 30 years when that person doesn’t have family in their life anymore," she said.

One woman in the audience brought up the question of Ashley’s potential to communicate her own wishes in the future.

"I do hope that Ashley isn’t [later] able to communicate, ‘Why did you do this to my body?’" she said.

For many, this case raises a larger issue of consent and how much latitude parents have in making decisions for their children.

"Among the most difficult question that parents … have to be asked to ask themselves is, ‘have we successfully gotten beyond thinking of our child as an extension of ourselves and begun to look at her as an individual?"said Erik Parens, associate for philosophical studies at the bioethics
research center at the Hastings Center in Garrison, New York. "At the end of the day, I believe we must respect the decisions of ‘good enough’parents."

In the end, Parens said that the issue is very much a philosophical one."I do believe different means can express different values and can emphasize different understanding of ourselves," he said. "I’d rather change minds than bodies."

FRIDA Wins NCIL Region V Advocacy Award

Yesterday, FRIDA was notified that we will be the recipients of an advocacy award from the National Council on Independent Living. We are the winner for Region V (there are 10 regions for NCIL). The award will be presented in July at the national NCIL conference (see www.ncil.org). Congratulations FRIDA! We are very proud to be recognized for our work by the disability community. This is the first award we've ever received as a group.

Here's to feminists with disabilities!!!!

Growth Attenuation Symposium in Seattle: See the Webcast!!!

Starting at 8:30 am PST on Wednesday May 16, there will be a webcast of a symposium on the ethics of growth attenuation....at Children's Hospita in Seattle! Check it out at:

http://bioethics.seattlechildrens.org/events/the_ethical_and_policy_implications_of_limiting_growth_in_children_with_severe_disabilities.asp

FRIDA was not made aware of this until this past Monday. However, there will be disability representation in the audience for sure and it sounds like maybe a few panelists as well.

Not only that but here in Chicago there is a panel on growth attenuation at Schwab at 8:30 am CST...also a late breaking news item.

It's AMAZING that hospitals are having these discussions! Personally, I can only say that the debate is a good thing in and of itself...but we MUST be hearing from disability voices!!! Any hospitals planning on holding similar forums, please do your best to locate disability advocates who can speak to why so many in our community have taken issue with the "Ashley Treatment." It is a civil rights issue for so many of us and those we live with. We have to communicate because if we don't then none of us can truly be partners with each other.

Please notify FRIDA of any hospital ethics forums that you may know of that have already or will have occurred...I would ike to keep track of where discussions are taking place.

Thank you.

http://www.statesman.com/news/content/news/stories/local/05/09/9emilio.html

Guardian for child on life support sides with doctors

Legal brief on Emilio Gonzales' care says doctors, hospital have followed the law on plans to discontinue treatment.
By Mary Ann RoserAMERICAN-STATESMAN STAFF
Wednesday, May 09, 2007

A court-appointed guardian for Emilio Gonzales, an 18-month-old on life support at Children's Hospital of Austin, has filed a legal brief that backs the doctors and the hospital in their plans to stop treating the child — against his mother's wishes.

Emilio, who has been on a respirator at Children's Hospital since late December, will continue receiving treatment until Travis County Probate Judge Guy Herman makes a final ruling on the dispute over the boy's care.

Herman postponed a hearing scheduled for Tuesday until May 30 at the request of attorneys because three witnesses whom lawyers for Children's Hospitals planned to call were unavailable.
The guardian ad litem, Austin lawyer Jody Helman, filed his 52-page brief with the court late Friday in anticipation of presenting his recommendations to Herman during the hearing.
The brief says the hospital and doctors have followed federal and state laws governing end-of-life care. It adds that "there is no constitutional right to medical treatment and Emilio does not have a fundamental right to receive life-sustaining treatment."

Helman's findings are likely to get strong consideration from the judge, because Herman chose Helman to investigate the case and make recommendations to the court.

Doctors say Emilio has Leigh's disease, a rare neurometabolic disorder that causes the central nervous system to collapse.

Emilio's mother, Catarina Gonzales of Lockhart, and her attorney, Jerri Ward, question that diagnosis, and Helman says in his brief that no definitive diagnosis has been made. Even so, doctors report that Emilio's brain is withering and that he is not responsive, a point also contested by his mother.

Gonzales, Ward and her co-counsel, Martin Cirkiel of Round Rock, believe that the doctors should continue treating Emilio. But doctors say that because Emilio has no hope of recovery and aggressive treatments are potentially painful, he should be allowed to die in peace.
Once doctors give notice that they want to stop treating a patient against the family's wishes, they can start a process in which the family has 10 days to transfer their loved one to another facility. The hospital and the court have given Gonzales and her supporters more time to find another facility, but months of searching have failed.

Helman's brief methodically attacks Ward's arguments that doctors and the hospital have violated the rights of Emilio and his mother by seeking to unhook him from the respirator.

Ward has accused doctors and the hospital of discrimination against the disabled and contends that the state law that allows doctors to overrule the treatment decisions of loved ones when conflicts arise is unconstitutional, among other allegations.

Helman's brief disappointed Ward.

"It's real surprising to me that a guardian ad litem would care more about the rights of doctors and the hospital than about Emilio," Ward said.

Michael Regier, general counsel for the Seton Family of Hospitals, which runs Children's Hospital, said he was "delighted the guardian's position on the legal issues are in sync with the hospital's."

maroser@statesman.com; 445-3619

May 8, 2007 10:25 pm US/Central
Court Appointed Guardian Sides With Hospital

(CBS 42) AUSTIN A court appointed guardian agrees with the hospital that it is time to take Emilio Gonzales off of life support.Seventeen-month old Emilio suffers from a degenerative brain disorder. Doctors at Children's Hospital of Austin want to remove Emilio from life support. They say there is nothing more they can do for him and that he is suffering.His mother has filed many motions with the court, trying to stop the hospital from doing that. The court appointed a guardian ad litem, who after several weeks of investigation filed a brief, saying he "the guardian ad litem respectfully requests that this court deny the legal arguments advanced by [Emilio’s mother]."Emilio's mother, Catarina, tried to find another hospital to take in her son. So far, she has been unsuccessful.The case goes back in front of a judge at the end of May.
(© MMVII, CBS Broadcasting Inc. All Rights Reserved.)

http://keyetv.com/local/local_story_128232625.html

News Conference on Disability Ethics: Chicago: 11 am May 9 at AMA

For Immediate Release: May 9, 2007

For Information Contact:Sharon Lamp (847) 803-3258; (847) 894-4907 cell
Amber Smock Ambity@aol.com

FRIDA Hosts Disability Rights News Conference on Ashley X and Emilio Gonzales Renews Call for the American Medical Association to Engage on Disability Ethics

(Chicago) On Wednesday, May 9 at 11 am on the sidewalk outside the American Medical Association (AMA) at 515 N. State St., Feminist Response in Disability Activism (FRIDA) will host a news conference about current crises in disability ethics. The news conference will include speakers from disability rights organizations ADAPT, Not Dead Yet, Equip for Equality and Access Living of Metropolitan Chicago.

The group will respond to the Washington Protection and Advocacy System’s May 8 findings that Seattle Children’s Hospital failed to obtain a court order for the sterilization of nine-year-old Ashley X. In addition, the group will respond to the current Texas futile care law crisis regarding 17-month-old Emilio Gonzales of Texas.

Ashley X is a nine-year-old girl with a profound cognitive disability. At the first signs of puberty when she was six, her parents approved a “treatment” which included a hysterectomy, removal of breast buds and massive infusions of estrogen, all with the effect of maintaining Ashley’s childlike size and appearance for the rest of her life. Disability rights advocates worldwide have since united in opposition to the ethics of the case.

Emilio is diagnosed with Leigh’s Disease, a degenerative muscular and respiratory disease. He is on a ventilator and feeding tube, without which Emilio would quickly die. Under the Texas futile care law, his doctors and the ethics committee at Emilio’s Austin hospital went against the wishes of his mother, and voted to discontinue Emilio’s treatment. His mother is currently locked in a court battle to keep her son alive.

FRIDA, ADAPT and Not Dead Yet have been advocating since January to develop a meaningful ongoing relationship on disability ethics with the AMA. The activists’ efforts have resulted in a meeting and a letter exchange, but have recently stalled due to inaction by the AMA.

The coalition is asking for the AMA to pass a resolution against the ethics of the Ashley X case, for an ongoing relationship with the AMA ethics group to develop disability ethics programs (preferably in the form of a Disability Ethics Committee), and for support of the Community Choice Act (CCA), which would enable people with disabilities on Medicaid to receive home support services so they do not have to live in institutions. The AMA has agreed to look at the CCA; however, it has made no public announcement on whether it supports the CCA.

###

Ashley X Update from WPAS

CNN News Story Here: http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html (Thanks to Trevor Holmes for catching it!)

Seattle Times Story Here: http://seattletimes.nwsource.com/html/localnews/2003698112_webchildrens08m.html (Thanks to Steve Drake!)

From WPAS:

To the disability community nationwide:

As many of you know, the Washington Protection and Advocacy System (soon to be Disability Rights Washington - DRW), opened an investigation in January 2007 into the "Ashley Treatment" interventions and the role of Seattle's Children's Hospital. Today, we are releasing the findings of that investigation.

The view the full report, complete with appendix items, please visit our website www.DisabilityRightsWA.org .

You should know:

1. Children's Hospital violated Washington state law in performing the hysterectomy portion of the "Ashley Treatment " which resulted in the violation of Ashley's constitutional and common law rights;

2. The Hospital has acknowledged the violation and accepted full responsibility;

3. The Hospital has entered into an enforceable, written five (5) year agreement with WPAS to take corrective action and other proactive steps; and

4, We have included a list of next steps in the Executive Summary that we hope will be a part of a nationwide collaborative effort of the disability community that will result in Ashley being the last person to receive "treatment" named for her.

Seattle Children's Hospital acknowledged the following in our five (5) year, enforceable agreement:

"Children’s has received and reviewed the WPAS report on Ashley and the treatment she received. In general, Children’s accepts the WPAS report. Specifically, Children’s agrees with the finding in the report that Ashley’s sterilization proceeded without a court order in violation of Washington State law, resulting in violation of Ashley’s constitutional and common law rights. Children’s deeply regrets its failure to assure court review and a court order prior to allowing performance of the sterilization and is dedicated to assuring full compliance with the law in any future case."

Some of you may think having a court order is a procedural matter easily overcome. That is not the case. We encourage you to carefully read the legal requirements section of our report to gain a full understanding of this critical safeguard of the rights of children for whom this treatment may be proposed.

If you are wondering about the applicable law in your state the first appendix section includes contacts from many states who have agreed to share their knowledge of the law in their states.

Let us know if you have any questions.

Mark Stroh, Executive Director
Washington Protection & Advocacy System*
mstroh@wpas-rights.org

*Washington Protection and Advocacy System (WPAS) is changing its name! Effective June 2007, our agency will be known as Disability Rights Washington (DRW). All contact information including email addresses will remain the same until further notice.

The Latest on Emilio: Tomorrow's the Day

A message from Bob Kafka of Not Dead Yet Texas:

Advocates:

The life and death struggle of Emilio is now in the hands of the Court. There will be a hearing on Tuesday, May 8th at 9am , Court House, Room 201 (Between 11th and 12th St just west of Gualadupe) Austin, Texas.

We need to pack the hearing room to show support for Emilio. The legal issues are complex but it is believed if Emilio had a tracheotomy he could leave the hospital and be with his mother and die in a more dignified setting.

If you are on a respirator or your child is, please come to the Court House and show that living on a respirator in the community is possible.

If you support the rights of people with significant disabilities please attend this hearing.

This is a human and disability rights issue. Doctors should not be able to override our expressed wishes.

Ironically the Catholic Church (Sisters of Charity run the hospital) and the Austin Bishop are supporting the killing of Emiliio. Orwellian speak has made them describe treatment of Emilio as "prolonging dying" rather than what it is "infanticide". Protecting the zygote seems more important than protection of the life of a 17 month child.

Doctors are not infallible and should not play _ _ _!

Please come to the Court House on Tuesday and support Emilio

NOT DEAD YET of Texas

A Message from the Executive Director of WPAS

I would like to say a word to all the bloggers who visit the FRIDA site. As Executive Director of the protection and advocacy agency that has been investigating what happened with the Ashley Treatment over the last few months, I have been impressed with your advocacy efforts. On Tuesday, May 8, 2007 we will be releasing our report with the findings and details of our investigation. It will be a first step. In the Executive Summary of our report we list a series of next steps that we plan to be involved in over the coming months. It will be a tremendous challenge. I am hoping we can work collaboratively with you on joint advocacy efforts as I believe we share the same goal. Thanks to Amber and all who are associated with the FRIDA blog, Stay tuned. We will be able to say more on Tuesday.

In appreciation,

Mark Stroh

(From FRIDA: Thanks Mark! We look forward to Tuesday!)

Bishop weighs in on debate over care of dying Texas boy]
AUSTIN, Texas (CNS) -- Citing difficult decisions in his own familyand the example of Pope John Paul II, Bishop Gregory M. Aymond ofAustin said Catholic teaching would permit the withdrawal ofextraordinary medical treatment for Emilio Gonzales, a dying17-month-old boy at Children's Hospital of Austin. Catarina Gonzales,the boy's mother, has been fighting for continued medical treatment ofher son at the hospital, which is part of the Seton Family ofHospitals, a 31-facility Catholic health system in central Texas. Theboy's physicians and other hospital officials have recommended thatthe child be removed from a respirator and given only "comfort care."Emilio, who has been blind and deaf since birth and was admitted tothe hospital Dec. 27 with a collapsed lung, has been diagnosed withLeigh's disease, a rare disorder that is causing his central nervoussystem to break down. The disease is considered incurable. "I cannotimagine the pain that Catarina experiences as she faces these terriblequestions that no mother wants to face," Bishop Aymond said in anApril 15 statement.http://www.catholicnews.com/data/briefs/cns/20070417.htm

Today's Zaman Istanbul, April 28, 2007
Family's appeal to stunt son's growth rejected

A board of doctors on the Health Ministry's ethics committee has rejected anappeal from a family with a son suffering from cerebral palsy to implement atreatment that would stunt their son's growth.

Dr. Öner Odabas, who heads the ministry's treatment services department,announced late on Friday that the Evren family's plea to allow a doctor toapply a growth-stunting procedure to their disabled son had been rejected bythe department's ethics committee, which is made up of a child neurologist, aradiologist, a deontologist, public health officials, a child psychiatrist, achild endocrinologist, a surgeon, and representatives of the TurkishPharmacists' Union and the Turkish Doctors' Union. "There has been nodocumentation of the positive consequences of this method in the literature todate," said Odabas.

The Evren family had applied to the Ankara University department of medicinelate March, where they were told they would have to wait for a decision fromthe Health Ministry's ethics committee before implementing the procedure tostunt their child's growth, also referred to as "Ashley's treatment." Thefamily had said they feared that if their disabled son Umut Mert got tallerand heavier, they would be unable to hold or carry him. Umut Mert cannot eat,speak or walk by himself.

Explaining the ethics committee decision, Odabas said Ashley's treatment wascurrently applied only in the US, stating that the number of cases where thegrowth-stunting procedure had been used was still too small to draw aconclusion and that thus the main reason the committee dismissed the optionwas that it was not ethical.

The family had been informed of the decision on their application, Odabassaid. The family's plea had sparked controversy, drawing both support andcriticism from various circles.Ashley's treatment is named after a severely disabled 9-year-old Seattle girlwhose parents opted to stunt her growth and prevent her sexual maturity inorder to allow them to continue to maintain a high standard of care for her.
28.04.2007 Today's Zaman Istanbul

Update, and Thoughts on Disability Rights

For those who have been following the AMA campaign, here's the latest: no response from the AMA. We have sent letters and even done a walk-in to follow up, all in a very nice fashion, but no response. Therefore, be on the lookout over the next few weeks for further FRIDA action.

For those who have been following the Emilio Gonzalez case: he has a court hearing on May 9 on whether to extend the Temporary Restraining Order (TRO) against the hospital pulling his ventilator. Until then, advocates across the country are working with folks in Texas to secure Emilio's rights.

Both the cases of Ashley X and Emilio Gonzales have elicited strong emotional responses and divided points of view. In Ashley's case, FRIDA took the stance that altering her body according to the parents' wishes and the hospital's approval was against her human rights. In Emilio's case, FRIDA's position is also against the hospital, but happens to come down on the mother's side. What's the difference? Is there any kind of similarity? WTF, FRIDA?

Speaking as an individual here, in trying to explain how I see FRIDA's work, I feel that FRIDA is basically coming from a disability rights perspective and the universal need to recognize those rights. In both Ashley's and Emilio's cases, we are looking at children who are unable to speak for themselves. As children with disabilities, they have the right to bodily integrity, in line with the UN Convention on the Rights of Persons with Disabilities (which the US has yet to approve). As people who cannot actually communicate for themselves, they fall into a very gray area of human rights. Their parents speak for them, and medical ethics committees and doctors presume to decide whether what the parents want is okay.

In addition, the feminist concern in both these cases is strong. In Ashley's case, we were concerned that it was considered all right to tamper with a little girl without her consent. In addition, we were concerned that no one was really looking at the fact that three of her four family caretakers are female. Most caregivers ARE female and caregiving is a profoundly feminist issue. In Emilio's case, he is the child of a young single mom. What is the nature of motherhood? How is it complicated by disability and how society interacts with disability? Is there a line between motherhood and caregiving? Is that line blurred, willingly accepted, or rejected? Who tries to moderate that line...for example, medical-industrial entities? These are just questions for you, the reader's, consideration.

But for me, bottom line: Ashley's and Emilio's cases are disability ethics cases. Not right-to-life or -death issues, not pity cases....purely cases where some people have an issue with the fact that a kid has a disability and there's no social structure to support them. That is what we need to work to change.

FRIDA, in my view, is most essentially about the right of females with disabilities to maintain control and choice over their bodies and their lives. (Really, the right of all people with disabilities, regardless of gender.) FRIDA is also about highlighting issues where feminism and disability come into play. Sometimes, FRIDA's position is not too popular. However, the reality is that life is diverse and what is most important is to listen to the voices of women who are living the life...as people with disabilities, as moms, as family members, as concerned citizens. I truly respect my fellow members of FRIDA as strong women who KNOW when someone has a problem with the fact that they or those they love have a disability.

Amber Smock
FRIDA

Judge Grants Request To Keep Infant On Life-Support

April 10, 2007
A judge in Austin Tuesday granted a family's request to keep a critically ill 17-month-old boy alive -- at least until later this month.
The judge ruled the infant should not be removed from life-support -- as scheduled this week by Children's Hospital of Austin.
The judge granted a temporary restraining order sought by the family of Emilio Gonzales. A hearing is April 19.
Catarina Gonzales says she believes they'll find another hospital for her son.
Children's Hospital of Austin, which has said the case is medically futile, has contacted more than 30 hospitals trying to place him.
Emilio is believed to have Leigh's disease. Doctors say his higher order brain functions are destroyed and he's non-responsive.
Children's Hospital has invoked a state law that allows hospitals to end such life-sustaining treatment -- with 10 days notice to the family.
The Legislature is considering changing the law.
Copyright 2007 by The Associated Press. All Rights Reserved.

AUSTIN - Lawyers for a terminally ill toddler on life support will again ask a court this week to keep alive the 17-month-old who cannot find another hospital to take him.
The family of Emilio Gonzales has until Tuesday to transfer the boy, who faced a similar deadline last month before his hospital provided more time to locate a new facility.
But no takers have emerged since Children's Hospital in Austin granted a two-week extension March 20. The hospital plans to remove the respirator Wednesday, and doctors expect Emilio to die within minutes or hours.
A lawyer for the family said she will ask a Travis County probate judge Tuesday for a temporary restraining order forcing the hospital to treat Emilio while the search continues.
"We're hopeful that we will receive more time to find a transfer for Emilio, because we have not exhausted all possibilities and leads," attorney Jerri Ward said.
Emilio has Leigh's disease, a degenerative neurological disorder causing his brain tissue to die. He has been at the hospital since December, and doctors fear the life support machines are hurting him.
Among his supporters are state lawmakers backing a bill that would prohibit hospitals from stopping life-sustaining treatment while a family pursues a transfer or other care.
Under the current law, doctors are obligated to give only 10 days notice before withdrawing treatment when further care is deemed medically futile, even over the wishes of the patient and family.
The temporary restraining order request would not be the first filed by Emilio's lawyers. Children's Hospital granted the recent two-week extension hours after Ward filed a similar motion four days before doctors first scheduled removal of the respirator.
But Michael Reiger, general counsel for the Seton Family of Hospitals, said there are no medical options left for the boy. He said Emilio has been turned down by 30 other hospitals, including ones that specialize in treating patients like him.
Reiger said Wednesday's removal would come at a convenient time for the family when support services are on hand.
"We would want it to be peaceful and dignified and as respectful as it could be," he said.
Emilio's mother, Catarina Gonzales, said her son reacts to speech and is not brain dead. Doctors say he has no purposeful movement and tests show that his brain is withering.
Last week, lawyers for the Gonzales family failed to persuade U.S. District Judge Sam Sparks to intervene in the case.
Texas is one of the few states with a timetable for cutting off a patient's life-sustaining treatment, according to studies cited by activist groups.
Under the current law, a doctor's decision to refuse a family's wishes to continue life-sustaining treatment is subject to review by a hospital ethics or medical committee. The patient and family get 48 hours' notice of that meeting.