Tuesday, May 29, 2007

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.


Saturday, May 26, 2007

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?


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

Tuesday, May 22, 2007

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.

Sunday, May 20, 2007

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.


Friday, May 18, 2007

News Story on the Ashley Symposium in Washington


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."

Thursday, May 17, 2007

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!!!!

Tuesday, May 15, 2007

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:


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.

Monday, May 14, 2007


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.
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.)


Tuesday, May 08, 2007

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*

*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.

Monday, May 07, 2007

The Latest on Emilio: Tomorrow's the Day

A message from Bob Kafka of Not Dead Yet Texas:


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


Friday, May 04, 2007

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!)