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.

Cleveland hospital rejects a terminally ill child (Emilio Gonzales)


A Cleveland hospital rejected a terminally ill child in Austin Wednesday after hospital officials granted the family an extension to keep him on life support.
Jerri Ward, attorney for the family, said 16-month-old Emilio Gonzales was rejected for reasons unknown, but she was trying to find out, so he could get into another hospital.
Seton Hospital officials announced Tuesday night that the child's family has until April 10 to find another place to treat him. Until then, Emilio will remain at the Children's Hospital of Austin, where officials said they will treat him for Leigh's Disease through the 18-day period or until the family finds another hospital.
"They are happy that they have more time to find another hospital that will take Emilio, but the 18 days they have been given will go quick," said Ward.
State Rep. Bryan Hughes and other lawmakers said they have pushed for House Bill 1094, which gives families more time to find treatment for their loved ones. The case has drawn a lot of attention, and lawmakers said it is the perfect example of a mother's fight to save her dying son.
"If doctor decides care is not appropriate, and if that doctor is validated by ethics committee, then, under current law, the family only has 10 days," said Hughes. "From Catarina's experience and hundreds of other families we talked to, 10 days is not enough."
The bill would ensure that hospitals continue treatment pending transfer, giving the patient's family the right to make that decision, not the hospital.
"What they're basically saying is that continued life is not of benefit to the patient, and that is not their right to decide," Ward said.

Emilio Gets Extension Till April 10

Austin Children's Hospital has agreed to extend support for Emilio Gonzales until April 10. If anyone has more info, please email so FRIDA can help figure out what's needed next. The story is pasted below and at this link: http://www.myfoxaustin.com/myfox/pages/News/Detail?contentId=2725356&version=1&locale=EN-US&layoutCode=TSTY&pageId=3.2.1.

Hospital Agrees to Keep Child Alive
Last Edited: Tuesday, 20 Mar 2007, 9:48 PM CDT
Created: Tuesday, 20 Mar 2007, 7:20 PM CDT

-->AUSTIN --

Catarina Gonzales had been fighting to keep her son Emilio alive after Children’s Hospital of Austin announced it would not continue treating the 16-month-old boy. Gonzalez is on life support and the hospital intended on taking him off the ventilator he needs to live on Friday.

However, Tuesday evening, the hospital granted an extension until April 10 at 5:00 p.m. Both the hospital and Emilio’s mother also agreed to keep each other informed of the efforts made to find a facility to transfer Emilio.

On December 28, 2006, Emilio Gonzales' mother brought him to the pediatric intensive care unit at Children's Hospital of Austin. Emilio was diagnosed with Leigh’s Disease and on March 12, a hospital ethics committee voted to end Emilio’s treatment.

“This is care that is medically inappropriate,” explained Michael Regier, spokesperson for the hospital. “The aggressive care this infant is receiving is causing suffering and harm to the infant and without clinical benefit and [it] should be discontinued.”

Catarina Gonzalez says she wants to spend as much time with her son as possible.
“As much as I can be with him I'm gonna be with him,” says Gonzalez. “I don't want them pulling the plug on him saying they're going to turn off the ventilator while he moves and while he opens his eyes.”

Online Petition for Emilio Gonzalez: Please Sign

The clock is still ticking on Emilio Gonzalez in Texas. As an added way to help, Linda Edwards of Rochester, New York, has created an online petition with the support of FRIDA. THANK YOU Linda! Linda will monitor the website and forward your signatures to Governor Perry's office. This is a great way for individuals to show their continued support for Emilio and his mom. What you say MATTERS, whether you say it by phone, email, online, fax...

This is the link: http://www.petitiononline.com/emilio16/petition.html. Please sign and leave a comment. Distribute to everyone you know. Bounce it around the world. Let's keep up the pressure, everybody! The text of Linda's petition statement is pasted below for those who want a quick look.

The FRIDA Fighters

To: Texas Governor Perry

A Reaction to the Proposed Removal of Emilio Gonzales Life Support

Dear Governor Perry,

This coming Friday, 23 March 2007, 16 month old Emilio Gonzales, against the wishes of his mother, is going to be taken off the respirator that is keeping him alive. We, the undersigned individuals and organizations, join disability rights activists and feminist disability rights activists across the country in denouncing this action as cruel and inhumane.

Under the provisions of The Texas Futile Care Law, the doctors treating Emilio for Leigh's Disease have overrided the wishes of his mother, Catarino Gonzales, that he be given more time to live. With the backing of the hospital's ethics committee, doctors have determined that treatment is "medically futile" and that if another hospital cannot be found for Emilio by Friday, then they will remove his ventilator and feeding tube, which will result in his death.

It is not the severity of Emilio's illness that is at issue here. Rather, we are opposed to the state-sanctioned removal of Emilio's life support and the violation of his human and civil rights and protections. We also join his mother, Catarina Gonzales, in her condemnation of doctors "godlike position," and believe her fight for the right of Emilio to live is life-sustaining and life-affirmative. Counter to the perspective of doctors, we do not believe it is undignifying to be on life support.

Please act today!!!! Time is running out. Please stop Emilio's 10-day death countdown. Although there are moves to overturn the futility care law to "treatment pending transfer," Emilio cannot wait until the law changes.

Like 6 month old Sun Hudson, who was disconnected from his life support in 2005, against the wishes of his mother, Emilio can't wait for a change in the law. He will die on Friday when he is removed from his ventilator.

Sincerely,
The Undersigned

Our Latest Letter to the AMA

March 19, 2007

Dr. Michael D. Maves, Executive Vice President, CEO
American Medical Association
515 N. State Street
Chicago, IL 60610

Dear Dr. Maves:

Thank you for your letter dated March 8, 2007. The meeting we had was historic – the first the disability community has held with the American Medical Association. We want to keep the dialogue alive.

We do appreciate that you will send Senate Bill 799, the Community Choices Act of 2007, to your legislative staff in Washington, DC to review. As we have stated before, we want the American Medical Association to support the bill as soon as possible. Toward that end, we would like to offer our expertise in assisting your staff to learn about this bill and its co-sponsors.

Please reconsider our request to meet members of the Ethics Group, at least on a quarterly basis or to have representation on an advisory committee, similar to the Gay, Lesbian, Bisexual and Transgender Advisory Committee that already exists within your organization.

You may not think it is “fruitful” to establish such meetings, but as an organization whose members treat so many people with disabilities (and receive payment for the services) the responsible thing to do is communicate with the people you serve, as a whole. Especially in light of your recent discussions about pediatric decision-making, how will you know what our perspective is without or representation in your organization’s structure?

We, as women with disabilities, have a very real stake in the decisions you and your members make and we deserve to be heard, at the table. By continuing to refuse to bring us into you committees, you will be maintaining the status quo, a standard of unregulated experimentation and devaluation of people with disabilities. We want to change this standard but we need your help to do that.

We look forward to your reply by April 2 about setting up regular meetings with the Ethics Group or, in the alternative, setting up a disability advisory committee. Thank you very much for your continued response.

Sincerely,

FRIDA, in coalition with ADAPT and Not Dead Yet

Many thanks to those who helped draft and edit this letter.

Yes, We Got a Letter From Dr. Maves.

Sorry to be so slackerly folks, but FRIDA/ADAPT/NDY did receive a letter from Dr. Michael Maves in response to our meeting of February 20. The text is as follows below. FRIDA is working on a response letter now. We will do our best to communicate more regularly through this blog!

March 5, 2007

Amber Smock
Feminist Response In Disability Activism
115 W. Chicago Avenue
Chicago, IL 60610

Dear Ms. Smock:

On behalf of the American Medical Association (AMA), I wanted to thank you and your fellow coalition members from Feminist Response In Disability Activism (F.R.I.D.A.), Not Dead Yet, and ADAPT for meeting with Dr. Cecil Wilson and me on February 27, 2007. I thought that our discussion was open and enlightening concerning several issues affecting the disability community. I was particularly touched by Ms. Donna Shaw's comment to the effect that we are all just one tragic event away from being part of the disability community.

I hope that our discussion regarding the issues brought up in the article "Attenuating Growth in Children with Profound Developmental Disability" and related editorial "Growth Attenuation---A Diminutive Solution to a Daunting Problem" that appeared in the October issue of the Archives of Pediatrics and Adolescent Medicine was helpful. While the JAMA/Archives journals are editorially independent of the AMA, I am pleased to see that you have written a letter to the editor of the Archives of Pediatrics and Adolescent Medicine outlining your views on the subject.

The AMA respects your coalition's concerns and position regarding the treatment outlined in this case. While the AMA had no involvement in the case or the decisions that were made, we recognize that the AMA plays a prominent role in educating physicians about the important issues affecting the medical profession---whether it is landmark research, clinical advances or challenging ethical issues.

As Dr. Wilson discussed, the AMA currently has no official policy on the treatments outlined in this article. AMA policy is made by our House of Delegates (HOD) on a biannual basis. The HOD is made up of Delegates from state and national specialty societies in the United States.

I have requested that the AMA legislative staff review the Medicaid Community-based Attendant Services and Supports Act of 2005 (MiCASSA) when this legislation is reintroduced as the Community Choices Act of 2007. As I indicated during our discussion, AMA policy is supportive of reforming the Medicaid program to provide more home and community-based options for Medicaid beneficiaries and allowing an individual to choose their best option for care. Our discussion has highlighted the need for such legislation. We look forward to the opportunity to review the new bill as soon as the authors make it available.

The American Medical Society has been very supportive of the disability community. I believe that the meeting we had on February 20 was useful. I do not believe the scheduling of regular meetings as you requested is indicated presently, but would welcome such a dialogue in the future as other issues surface that warrant discussion.

Thank you again for your activism on behalf of the disability community and your willingness to share your views with the American Medical Association.

Sincerely,

(signature)
Michael D. Maves, MD, MBA

We're Waiting.

We're still waiting to receive a follow up letter from Dr. Michael Maves. The deadline is end of the day Tuesday, March 6. We are currently simply allowing the AMA time to follow up according to good faith, and we are very aware that the community is awaiting a follow up too. Thank you for your patience, readers. We are very serious about developing this process as a community.

In the meantime, the big mainstream news of the day is about Obama and the Clintons down in Selma, Alabama. They are commemorating the 1965 events that spurred on the passage of the Voting Rights Act, including Bloody Sunday at the Pettus Bridge, March 7, 1965. I would like to take a moment to commemorate Bloody Sunday as well.

In the history of direct action to advance civil rights, the events of Bloody Sunday are a lesson in courage, especially to those of us in the disability rights movement. Those at the bridge that day simply wanted two things: the right to vote and exposure of the kind of deep-seated oppression black people in the South experienced every day. If you have ever looked at pictures of Bloody Sunday, you will know that the marchers faced a mob of cops who were armed and looking for a fight....and yet they marched. Straight up, that takes a lot of gonads, and in the end, they won.

People with disabilities want to be treated as human, and we want acknowledgement that the system needs to change, and we want to see that change HAPPEN. Every day, we in the community deal with our own Bloody Sundays in the hope that some good will come out of it all. Sometimes we lose, but hopefully more often we are winning.

Stay tuned.

So We Had the Meeting. What's Next? (And Some Links You Should Visit!)

Yes, on Tuesday, February 20, a team of five women representing FRIDA, ADAPT and Not Dead Yet met with AMA CEO Dr. Michael Maves, AMA Chairman of the Board of Trustees Dr. Cecil Wilson, and AMA Senior VP for Communications Mike Lynch. In addition, AMA communication staffer Melissa Smith was present.

Our team included Diane Coleman (Not Dead Yet), Donna Shaw (FRIDA), Donna Harnett (a mom of an 11 year old with profound disabilities and a FRIDA ally), Rahnee Patrick (Chicago ADAPT and FRIDA) and myself, Amber Smock (FRIDA and Chicago ADAPT).

A whole lot of people helped us out in preparation!! For every person who went to the meeting there were probably about at LEAST 10 to 15 people weighing in directly with advice and support. That's a conservative estimate. Thanks also to Access Living for interpreting support.

We laid out our demands and proposals as follows:

That the AMA issue a resolution opposing the Ashley X case.

That the AMA support the Community Choices Act.

That the AMA establish an ongoing series of meetings with the disability coalition to pursue the following proposals with their Ethics Group: that there be an Ashley X discussion panel at the next AMA convention in June; that a disability medical ethical protocol be developed in conjunction with the disability community; that the Council on Ethical and Judicial Affairs review the Ashley X case with us; and that we work together to develop disability sensitivity and awareness programs in AMA programs such as STEP, which works with medical schools.

AMA CEO Maves is to respond to us with a letter by March 6 with the AMA's decision on whether to meet these demands.

We in the coalition were excited to meet with the AMA to, for the first time ever, engage with a medical professional organization on issues related to disability ethical concerns. Meeting with the CEO and Board Chair is key to real engagement with the AMA as a whole.

We want to once again thank everyone who has supported this campaign through faxes, calls, emails and direct actions. All of our efforts together made this meeting happen. Our will to change society for the better is amazing and hopefully we can turn this into a meaningful partnership with the AMA. YOU ARE TERRIFIC.

Stay tuned!

In the meantime, there are three significant websites FRIDA would like to ask you to visit.

Martin Harnett's Website: http://martintreatment.spaces.live.com Martin's family has created this website as their answer to the Ashley X case. They do not sugarcoat the reality of living with a person with severe disabilities; however they make their case for choosing not to pursue the medical solution that Ashley X's family chose.

John Hockenberry on the Ashley X Case: http://www.johnhockenberry.com/Blog/EDADA4E6-82AC-4B28-9525-3242F18F772A.html Hockenberry's blog post is titled "Ashley X: Straight On Till Mourning" and most significantly comments on the nature of the covenant of parenthood.

Dissent Among the Doctors, as told by Salon.com: http://www.salon.com/news/feature/2007/02/09/pillow_angel/ Rebecca Clarren found that doctors at Seattle Children's are not as unanimous in support of the Ashley X case as was originally reported. In addition, doctors who deal with people with disabilities across the country came out in opposition.

HOLY COW!!

That's right folks, on Tuesday, February 20 at 2 pm, FRIDA/ADAPT/Not Dead Yet is scheduled to meet with AMA CEO Dr. Michael Maves and AMA Board Chairman Dr. Cecil Wilson, who is in Chicago from Florida for the day. At this meeting, we will open dialogue on our demands. Many thank yous to our faithful feminist freedom fighter Sharon Lamp for serving as our AMA phone contact!

Many thanks also to everyone across the US who called and emailed and faxed various members of the AMA over the last month. FRIDA, ADAPT and Not Dead Yet are aware that there have been many who have been working behind the scenes to get the AMA to meet. Also, there has been incredible informaion sharing between diverse advocates. Together, we have all created some historically significant pressure to seize on an issue to expose real problems. FRIDA/ADAPT/NDY applaud everyone in our community for their UNITY!

Remember, this is only one step in our campaign! Right? Smile. So that means we gotta prepare for this meeting...and keep you guys posted, of course! Please contact us if you feel there is information we should have prior to the meeting.

Congratulations to everyone!
FRIDA

FEBRUARY 12. AMA, It's the Last Day.

Today is the last day for the AMA to respond to our demands regarding the Ashley X case. We have heard nothing so far. Let's go get em folks!!!!!! Just remember how many people are PISSED OFF about this case!

We have a bit of a different tactic today though, keep reading.

Today, the AMA is at the JW Marriott Hotel because their Advocacy Conference starts tomorrow. Let's try buggin' em at the hotel. Ask for Doctor Maves, Doctor Plested or Doctor Sade (you choose!). The phone number is: 202-393-2000. The fax is: 202-626-6991.

Here is our original basic letter:

Dear Drs. Maves, Plested and Sade,

Feminist Response in Disability Activism (FRIDA), joined by Chicago ADAPT and Not Dead Yet, and with the support of the national ADAPT community, urges the AMA to set up a meeting with us regarding ethics and disability in the case of Ashley X BY 5 PM CST MONDAY FEBRUARY 12.

Through Jon Burkhart, the AMA Chief of Staff, Dr. Maves has said that he does not feel a meeting with the disability community would be fruitful. We beg to differ. If the AMA is truly dedicated to discussing all angles of controversial medical cases, an AMA meeting with representatives from our coalition would be extremely fruitful and mark a historic step towards building a bridge between our communities.

We ask of Drs. Maves, Plested and Sade that a meeting time and date be established for the purpose of a dialogue on the Ashley X case between our coalition, the AMA Council on Ethical and Judicial Affairs (CEJA), and the AMA Board of Trustees. We would like to review the Ashley X ethics situation with CEJA and address support of legislation for home-based supports with the Board of Trustees.

Please contact FRIDA via Sharon Lamp at (847) 803-3258 with a time and date to meet with our coalition by 5 PM CST MONDAY FEBRUARY 12.

Sincerely,

Feminist Response in Disability Activism (FRIDA)
With the support of Chicago ADAPT, the National ADAPT Community, and Not Dead Yet

************
The regular contact info is:

Dr. Michael Maves
CEO of the AMA
Michael.maves@ama-assn.org
Via Jon Burkhart, Chief of Staff voice: (312) 464-4344
Jon Burkhart's e-mail: jon.burkhart@ama-assn.org
AMA Fax: (312) 464-4184

Dr. William G. Plested III
President, AMA
president@ama-assn.org
AMA Fax: (312) 464-4184

Dr. Robert M. Sade
Chair of the AMA Council on Ethical and Judicial Affairs (CEJA)
Voice: (843) 792-5278
Fax: (843) 792-8286
sader@musc.edu
Thanks once again to all of you!!!! We will send an update if we hear anything, and if we don't, you know what's next....MORE ACTION!!!

Feminist Response in Disability Activism Hosts Speakout to Demand
The American Medical Association Engage on Disability Ethics

(Chicago) On February 7, Feminist Response in Disability Activism (FRIDA) hosted a speakout with leading Chicago-area disability rights groups on FRIDA’s campaign to meet with the American Medical Association (AMA) regarding the ethical issues raised by the case of Ashley X. The AMA has refused to meet with FRIDA and their allies for over a month. The conference was held at Access Living of Metropolitan Chicago.

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.

Speakers included Monica Heffner, a FRIDA member; Marca Bristo, President of Access Living; Rahnee Patrick, Chicago ADAPT; Donna Harnett, mother of a son with profound disabilities; Diane Coleman, co-founder of Not Dead Yet; Larry Biondi, Progress Center for Independent Living; and Mary Kay Rizzolo, Associate Director of the Institute on Disability and Human Development, University of Illinois at Chicago.

Rizzolo expressed the fundamental outrage of those present when she said, “Disability is not undignified. Nor is reproductive health offensive. There is no indignity in being a sexually mature adult with significant functional limitations.”

“If any other recognized minority group requested a meeting to discuss disparities in medical treatment, it is hard to imagine that the AMA would refuse. Disability groups deserve the same respect and consideration that would be given to other minority groups,” stated Coleman.

Amber Smock of FRIDA said, “Our efforts to meet with the AMA will continue because this is literally a life-and-death issue for people with disabilities. As a community, we must hold medical professional organizations and ethics committees accountable for their violations of our bodies.”

FRIDA Statement As of Wednesday, February 7, 2007

On January 11, Feminist Response In Disability Activism led a coalition of people with disabilities in an action at the American Medical Association to demand three things. First, that the AMA meet with our coalition to review the ethics in the case of Ashley X. Second, that the AMA issue a resolution opposing the decision reached in the case of Ashley X. Third, that the AMA support social solutions to social problems by endorsing MiCASSA, the Medicaid Community Attendant Services and Supports Act.

The AMA promised that day to work on setting up a meeting with CEO Dr. Michael Maves. The AMA has failed to uphold that promise and in fact has stated that they will refuse to meet with us. FRIDA stands here today with our allies to ask once again for a meeting with the AMA by February 12.

FRIDA feels the AMA’s refusal to open a dialogue with our coalition is a symptom, so to speak, of doctors’ disconnection from the everyday lives of real people with disabilities.

Disconnection is fatal. It allows people to treat one another as though they were less than human. Disconnection led us to the practice of forced sterilization in this country. Over 60,000 Americans were sterilized without consent before protective laws were passed. Members of the medical community, who were also prominent eugenics leaders, promoted the old laws that allowed sterilization.

Disconnection led us to cases like that of Baby Doe, who was born with Down syndrome in 1982. Baby Doe’s doctors advised his parents not to approve a surgery that would unblock Baby Doe’s esophagus, because the baby’s death would leave everyone better off. So Baby Doe starved to death at one week old. 20 years ago, the euthanasia of newborns was commonplace. Baby Doe’s case, and the case of Baby Jane Doe, led to federal legislation forbidding the withholding of treatment from disabled newborns.

Disconnection has led us to the case of Ashley X. Little is understood about the potential of people with what appear to be profound cognitive disabilities. While Ashley may not be able to speak English or solve math problems, we cannot so easily define her capacity for emotion and identification. FRIDA is offended by the effort to label Ashley and make her less than human. Every effort should have been made to preserve Ashley’s bodily integrity. Ashley was not at risk of death. The removal of her breast buds and uterus, along with her growth stunting, are not a 100% safeguard against the uncertainties of the future. As women with disabilities, FRIDA is angry that in a nonmedical situation, medical means were used to solve a social problem.

Last December, the United Nations passed a Convention on the Rights of People with Disabilities, which reads in part, “Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.” Baby Doe had to die for federal legislation that saved the lives of others. What will it take to protect the bodily integrity of people like Ashley, who are not ill, only disabled?

Many doctors have worked to speak out on this case, most notably Dr. Henry Betts, who is the former CEO and President of the Rehabilitation Institute of Chicago, or RIC. RIC is the number one rehab hospital in the country. Dr. Betts wrote a letter to the President of the AMA requesting that the AMA meet with us. The AMA has chosen to ignore Dr. Betts.

The AMA is out of touch with disabled people. 11% of American children have disabilities. One in five Americans in the general population have a disability. We in FRIDA want to know why the AMA refuses to engage on disability issues, a topic of pressing concern to so many of us. FRIDA asks the AMA to today begin seeking social solutions, not medical “fixes,” to social problems.

FRIDA Press Conference Wednesday Feb 7, 11 AM

Friends, thank you for your patience. The final info for the FRIDA press conference is:

Wednesday February 7, 11 am to 12 noon
Access Living 614 W. Roosevelt Rd
Speakers will include representatives from FRIDA, Not Dead Yet, a parent, and others from our coalition/community
We will be asking, through the media, that the AMA engage with the disability community according to the FRIDA demands.

Please, please make time to attend this event if you can. Also, please take the time to sign the Solidarity Statement against the Ashley Treatment at http://www.katrinadisability.info/ashley.html. So far over 430 people from 73 organizations and 12 countries have signed it.

Below we have pasted a story that ran in the Chicago Defender last Thursday. Jann Ingmire, director of media relations for JAMA and its archives, says the AMA doesn't plan to meet with us. OK folks, that means we need to show them some power!!!! See you Wednesday.

FRIDA
************************************************************************
The Chicago Defender
Activists for disabled maintain AMA shunned them

by Kelly MahoneyFebruary 2, 2007

The American Medical Association currently has no plans to meet with disability activists who protested in front of the AMA's Chicago headquarters in mid-January.

Sharon Lamp of Des Plaines said she and more than 20 other protestors left the Jan. 11 demonstration believing they had a commitment for a meeting in the near future over the so-called "Ashley treatment" of the disabled.

"The reason we left the protest when we did was because of (the AMA's) good faith belief and their promise to get back to us" the following week, Lamp said. More recently, Lamp and her associates were told that the AMA "didn't want to meet and didn't understand what the purpose of the meeting would be, something like that," Lamp said.

The protest ended with an assistant to AMA CEO Dr. Michael Maves agreeing to arrange a meeting between activists and AMA representatives. Maves was out of the office at the time.
Jann Ingmire, director of media relations for JAMA and its archives, said Thursday she was unaware of any meeting being set up, however.

"I know that there is not going to be a meeting between the AMA exec and the protestors," Ingmire said. "That is not going to happen."

The protest stems from a Washington case in which doctors used high-dose hormones and a hysterectomy to keep a severely disabled girl permanently small. The parents of the 6-year-old girl (identified on a blog as Ashley) had sought the treatment, concerned that they would no longer be able to care for their daughter if she grew to her projected adult height of 5 foot 6 inches.

Ashley's story was first reported in the October issue of the Archives of Pediatrics and Adolescent Medicine, a periodical of the Journal of the American Medical Association (JAMA) and Archives. Ashley is not identified by name in the article, however.

The AMA is editorially independent from its various journals, according to a Jan. 11 statement released by the AMA. The statement added that the AMA has no policy regarding the Ashley treatment.

Amber Smock is a member of the Feminist Response in Disability Activism, which organized the initial protest. She said her organization is working on a letter, phone call and fax campaign to urge the AMA to meet with activists.

"The goal is really to open discussion with the AMA and for the AMA to engage with the disability community," she said. "Now it's a good opportunity for doctors and people in the disability community to come together."

Smock said her organization and others will continue to press for a meeting to discuss issues sparked by the Ashley treatment.

"Right now we're working on the meeting," Smock said. "If they don't (meet with us), we'll just have to continue to advocate in our community. We've been waiting a long time for something like this to happen that will bridge the gap between disability and medicine."

FRIDA Thanks Our Friends!

FRIDA would like to THANK YOU and your friends/allies for faxing/calling/emailing the AMA on Friday! We heard people all over the country were getting into it. Vermont, New York, Oregon, Texas, South Carolina, Michigan, Indiana, Illinois (obviously) and on and on... It was great! We heard some people actually spoke to Dr. Sade. And Jon Burkhart was not in the office...he'll have a surprise this morning, thanks to you all!

Unfortunately, we have not yet got a set meeting date and time. You know what that means...more action! Over the weekend, FRIDA, with the support of Not Dead Yet and ADAPT, held a planning meeting to strategize our next move. We'll be sending out an alert this afternoon, so keep your eyes peeled! We have the force on our side, folks. It's incredible.

Til this afternoon! Power to the people!!!
FRIDA

Update on AMA Campaign

Thanks to all of you across the US who called and emailed and faxed the AMA on Friday! Unfortunately, we do not yet have a meeting time and date, so we are laying plans for next steps. Those of you on my email list, look out for news on Monday, January 29. To join this list, please email me at Ambity@aol.com.

FRIDA would like to give huge applause to everyone in the disability community who has worked hard to keep the Ashley Treatment issue alive in the media. We have heard from pissed-off people all over America, parents and people with disabilities alike. If you have ever doubted in your heart for one tiny second that a person with a disability might just be less than a full human being, know that there are millions of people out there who believe otherwise, and who are ready to do something about it. The disability community truly has POWER. Thank you all.

FRIDA would like to recognize major disability organizations for opposing the Ashley Treatment. Susan Fitzmaurice of Michigan is keeping an excellent list of statements from these organizations. Please visit her site at: http://www.katrinadisability.info/ashley.html. Don't forget to sign her petition against the treatment.

FRIDA would like to invite you also to view a YouTube video by A M Baggs on the autism experience, which is dedicated in part to Ashley X. For the video, please visit: http://www.youtube.com/watch?v=JnylM1hI2jc. Never assume.

I would also like to apologize for the delay in posting to this blog as FRIDA has been working mainly through e-mail alerts.

Again, the RESPONSE by the disability community on this issue is staggering. Take every opportunity you can to educate your community on the Ashley X case and to stimulate debate on the rights of ALL people with disabilities.

(for those of you looking for the "meat" of the action scroll down past the initial stuff)

Report on the "Ashley Treatment Action"

On Thursday, January 11, disability rights advocates gathered in downtown Chicago with the intention of staging an "Ashley Treatment Action," in response to the case of nine-year-old Ashley X. of Washington State.

Ashley has multiple profound disabilities and does not talk or move on her own. Her parents sought home care supports but those did not work out. Instead they opted to care for her on her own and have her undergo a "treatment" that would enable her parents to more easily care for her. The "treatment" included a hysterectomy, removal of her breast buds, an appendectomy and ongoing estrogen hormone "therapy" to stunt her growth so that she stays small. The case has inspired controversy around the nation. Many disability rights advocates have opposed it.

In an effort to achieve some concrete change, Feminist Response in Disability Activism (FRIDA) led a coalition of Not Dead Yet, ADAPT and Advance Youth Leadership Power (AYLP) in an action at the national headquarters of the American Medical Association (AMA), located in Chicago.

We targeted the AMA because it sanctioned the "Ashley Treatment" by publishing the original article describing it in one of its publications, the Archive of Pediatric and Adolescent Medicine. In addition, the publication's editors recommended that the way to find out if the "Ashley Treatment" was beneficial was to perform it on other children.

Our demands were threefold. First, we asked that the AMA's Committee on Ethical and Judicial Affairs meet with a team of advocates from the disability community to review the case. Second, we asked that the AMA issue a formal statement of support for MiCASSA. Third, we asked that the AMA issue a statement condemning the "Ashley Treatment" for other children.

On Thursday afternoon, our coalition met up at a coffee shop, about twenty strong. (FYI having coffee before an action is a really, really, really good idea!) We would be joined by others at the site. We lined up and proceeded to the building housing the AMA offices. We arrived and attempted to enter through the accessible entrance. Security guards blocked the majority of the group from entering, citing the "fact" that the lobby was private property. Our group began entering through the *other* accessible door. Most of us made it in. Reporters had already arrived and had begun attempting to interview the protesters. Our negotiating team began attempting to meet with AMA CEO Michael Maves.

After several minutes of attempting to gather in the lobby, our team decided to move outside because we were losing the opportunity to get recorded on TV cameras. Our negotiating team remained inside to continue fighting for access (the Michael Maves kind). Once we moved outside, we faced a barrage of TV cameras, as well as print and radio reporters. The media presence was truly incredible and our coalition had worked very hard to achieve that. We whipped out our protest signs, which included slogans such as "Operations Not Accommodations" and "AMA: Stop Medical Oppression of Women." (Thanks to Sharon Lamp, who is DA QUEEN of good slogans!) Gary Arnold then led the group in a skit on how to apply for an ethics job with the AMA.

Then, while we waited for news of negotiations, we chanted and chanted and CHANTED!!! The police wanted us to move away from the building and gave us three warnings. The media were complaining they could not interview us, so we went ahead and moved farther away, so we got interviews and plus, the people looking down from the highrise building had a good look at the disabled people making a stink on the ground! The employees sure had an exciting day. Many came down to the lobby to observe what was going on.

After about 45 minutes, our negotiating team came away with a deal: apparently the CEO was on a plane somewhere and unreachable (so they say...). His secretary committed to securing us a meeting with her boss next week. You know what will happen if that doesn't happen....!!!!! So we will be following up with all of you for your support if they don't meet our promises!

At that point, we had a load of media coverage and as much of a win as we could secure before the paratransit rides arrives. So we called it a victory and chanted some more, yeah you know what it was..."The people united will never be defeated!"

The best thing about this action is the AP covered us with a photographer too, so the story is going out across the nation...and I just got word CNN included our action in a story. The other best thing about the action was the people who turned out and worked to get this organized. The energy was fantastic! Amazing! The best thing to happen to feminist/disability rights in a long, freakin' time! Many thanks to the following people who contributed in various ways:

John Jansa, Larry Biondi, Steve Drake, Ramona Harvey, Sam Knight, Diane Coleman, Rahnee Patrick, Ana Mercado, Sarah Triano, Marca Bristo, Sharon Lamp, Lauren Bean, Mike Hasler, Jim Glozier, Gary Arnold, Gabriela "I Lead Parades" Hernandez, Devon Whitmore, Jose Ocampo, Veronica Martinez, Jody Thomas, Wil Cowling, Gloria Nichols, Rob Rotman, William Owenson, Bob Kafka, Stephanie Thomas, Marsha Katz, Jeanine Bertram, Sarah Watkins, Joe Hall, Veramarie Baldoza, Janice Stashwick, Heather and Garland Armstrong, Mary Delgado, Sharon Snyder, Donna Shaw and many others who I apologize to for not having the names....and lots of others that offered support and encouragement. The disability community is wonderful...and ANGRY.

I also want to thank Donna and Martin Harnett for coming. Donna is Martin's mom and Martin has a severe disability similar to Ashley's. Martin's PA didn't show up this morning so Donna brought Martin to the action. Donna spoke to the news media today at our action. Thank you very much to Donna and Martin.

In particular I wanted to thank the negotiators: Sarah Triano, Diane Coleman, Lauren Bean and Marca Bristo. Gary was our skit dude, and Sharon Lamp was our street marshal and a media contact. Stephen Drake and Diane Coleman were super media callers. Thanks again to you all.

Keep up the debate! The time to act is NOW. Tell all the important people you know to make a public statement about this case.

Amber Smock
FRIDA
Chicago ADAPT

Some Good Blog Posts Regarding the Ashley Treatment Debate

http://elmindreda.blogspot.com/2007/01/dear-ableist.html

http://thegimpparade.blogspot.com/ has several things on Ashley

http://growingupwithadisability.blogspot.com/

http://disstud.blogspot.com/ it is the january 5th entry entitled "Sigh"

http://midlifeandtreachery.blogspot.com/2007/01/it-begins-with-ashley.html

Thanks to imfunnytoo for the links!!

For Immediate Release: January 10, 2007

For Information Contact:Sharon Lamp - (847) 894-4907
Stephen Drake - (708) 209-1500; (708) 420-0539
Amber Smock - Ambity@aol.com

Feminist Response in Disability Activism (FRIDA)To Lead “Ashley Treatment Action”at the American Medical Association Headquarters

At 1 p.m. on Thursday, January 11, Feminist Response in Disability Activism (FRIDA), with the support of other disability groups, will stage an “Ashley Treatment” demonstration at the national headquarters of the American Medical Association (AMA) in Chicago at 515 N. State Street.FRIDA will demand that the AMA start practicing real ethical accountability and dialogue with the disability community.

The action is in response to the AMA’s sanction of the “Ashley Treatment” through its publication of the original case article in the Archives of Pediatric and Adolescent Medicine case. This AMA owned-journal went so far as to call for further “study” of the issue by subjecting more children to the same drastic surgeries and follow them over time.

People with disabilities and families nationwide have reacted with outrage to the drastic medical “solution” to what is actually a complex social problem of finding real supports for people with disabilities and their families. FRIDA is also not surprised that the initial recipient of the “Ashley Treatment” was a little girl, given that girls, and girls with disabilities in particular, are perceived as easier subjects for mutilation and desexualization.

Ana Mercado of FRIDA notes, “Our bodies really are the battlegrounds on which ethics debates are fought.” FRIDA seeks to protect our bodies from having to become battlegrounds in the first place. The issue at hand is not our bodies, but the choices that other people make for our bodies.

FRIDA is a group of radicalized women with disabilities representing ourselves and fighting for freedom for our bodies. FRIDA is supported in this action by Chicago ADAPT, the national ADAPT community, Not Dead Yet and Advance Youth Leadership Power (AYLP).

###

Feminist Response in Disability Activism
614 W. Roosevelt RoadChicago, IL 60607
Contact: Monica Heffner, (312) 253-7000
Blog: http://fridanow.blogspot.com/

Send this action alert to everyone you know. Then give Seattle a buzz. Thank you.

ACTION ALERTFax/E-mail/Phone CampaignFeminist Response in Disability Activism (FRIDA), with the support of Chicago ADAPT, the national ADAPT community and Not Dead Yet, invites you to speak out about the “Ashley Treatment.”

Our Targets: Seattle Children’s Hospital staff involved in the case of nine-year-old Ashley’s growth attenuation and sterilization, as well as Melinda Gates, chair of the Seattle Children’s Hospital fundraising committee and Susan Macek, Director of Communications for Seattle Children’s Hospital. Why: To oppose their permission of what is now known as the “Ashley Treatment,” and to condemn further permission of such “treatments” for children with disabilities whose lives are not otherwise at risk.When: Tuesday, January 9, 2007, starting at 9 am in your time zone.

Contact Info:

Dr. Douglas Diekema
Phone: 206-987-2380
B-5520 – Emergency Medicine
4800 Sand Point Way NE
Seattle, WA 98105
Fax: (206) 987-3836
E-mail: Douglas.diekema@seattlechildrens.org

Dr. Daniel F. Gunther
Phone: (206) 987-2380
M1-3 – Endocrinology
4800 Sand Point Way NE
Seattle, WA 98105
Fax: (206) 987-3836
E-mail: Dan.gunther@seattlechildrens.org

Susan MacekDirector of Communications, Seattle Children’s HospitalPhone: (206) 987-5201Pager: (206) 469-6310E-mail: susan.macek@seattlechildrens.org

Melinda Gates (yes, Bill Gates' wife)
PO Box 23350Seattle, WA 98102
Phone: (206) 709-3100
Fax: (206) 709-3252
Email: info@gatesfoundation.org
Ashley is a nine-year-old with a severe cognitive disability. In order to keep her small and more easily cared for by her family, doctors at Seattle Children’s Hospital are having her undergo hormone “therapy” to stunt her growth. In addition, they surgically removed her breast buds, uterus and appendix. The “Ashley Treatment,” as her parents call it, is a medical “fix” to serious social problems we face in America today. The first of these problems is a lack of quality home-based services for people with disabilities. The second is the social attitude that people with disabilities are less than human and therefore fair game for experimentation. The third is a lack of understanding of disability vs. illness: as Joe Hall of South Carolina has stated, “When I was born my parents knew that I would never walk, but they would have never thought it would be acceptable to cut my legs off.”

To review Ashley’s parents’ blog, please see:

http://ashleytreatment.spaces.live.com/

To review one of the original articles as reported by the BBC, please see:http://news.bbc.co.uk/go/pr/fr/-/2/hi/americas/6229799.stm

We need to let the Seattle Children’s Hospital and its fundraising chairperson know that the Ashley Treatment has not gone unnoticed by those of us who live with disabilities.
For more information, AND TO KEEP US POSTED OF YOUR “ASHLEY TREATMENT” ACTIVITIES, please call Sharon Lamp at (847) 803-3258 or e-mail Amber Smock at ambity@aol.com.

Please join the disability community in remembering the life of baby Allen Bollinger and all the victims of ableism that dominant culture would forget; lives terminated in the name of compassion and care, perfection and progress, tenderness and trust.
Disability History Conservators
Our Lives, Our History: They Matter!
#
Remembering Baby Allen Bollinger
b. [Nov. 12, 1915, Chicago], d. [Nov.17, 1915, Chicago]
"Baby Bollinger” (first name: Allen) was born to Anna and Allen Bollinger at the German-American Hospital, then located at Diversey and Halsted. The seven lb. baby was diagnosed with multiple physical anomalies [1] and became the first victim in a string of public infanticides of disabled babies committed by the head of staff at the hospital, Dr. Harry Haiselden. The doctor declared the baby a “monster;” a “pitiful bundle of semi-life." [2] Anna Bollinger was encouraged to allow her baby to die by withholding life-saving surgery, "I want my baby. But the doctor has told me...I want him to live-but I couldn't bear to think of how he would suffer…how he would so often curse the day he was born. So I agreed with the doctor."
Many, including Jane Addams and Director of the National Children’s Bureau, Julia Lathrop, denounced the infanticide. Anna’s friend, Catherine Walsh, testified “It was not a monster, that child, it was a beautiful baby”. Yet on Nov. 17, Allen Bollinger, to his mother’s undying grief, and to Chicago’s shame, died as the result of treatment denial. [3]
On the day of Allen Bollinger’s death, the Chicago Tribune newspaper printed the following: “A pink bit of humanity lay upon the white cloth.
Its blue eyes were wide open. Its hair was brown and silky, it dug at its face with little fists. It cried lustily as it drew up chubby legs and kicked out. It seemed quite vigorously informed with life.” [4]
References
[1] Pernick, Martin S, The Black Stork: Eugenics and the Death of “Defective” Babies in American Medicine and Motion Pictures since 1915.
New York: Oxford University Press, 1996, p3.
[2] Chicago Tribune, 11/17/15
[3] Chicago Daily News, 11/17/15
[4] Chicago Tribune, 11/17/15

Disability History Conservators
Our Lives, Our History: They Matter!

This case is one of the stories in the media last year that inspired FRIDA members to start thinking we needed a women's group to respond to stories like this. Read on. Get pissed off. Join FRIDA. (Next meeting is December 18, 2 to 4 pm at Access Living.)

Former suburban nursing home worker pleads guilty in patient's rape
Thu Nov 16, 2006 9:03 am (PST)
WHEATON, Ill. -- A former suburban Chicago nursing home worker chargedwith raping a profoundly brain-damaged resident who later gave birth changed his plea to guilty Wednesday in DuPage County Circuit Court. Authorities said Reynaldo Brucal Jr., 19, of Schaumburg, raped the23-year-old woman, who suffers from cerebral palsy, at the AldenVillage Health Facility for Children and Young Adults in Bloomingdaleearly last year. In accepting the guilty plea to a count of aggravated criminal sexualassault, Circuit Judge George Bakalis said Brucal faces a sentenceranging from 6 to 30 years in prison. Bakalis set a presentencing hearing for Dec. 13, at which time he saidhe would set a sentencing date for sometime in January.The baby's mother, who cannot walk or talk, and her twin sister hadlived at Alden Village since they were 10 but were removed from thefacility when the pregnancy was discovered, five weeks before the babywas born.Bloomingdale police took DNA samples from all the male workers at thenursing home and matched Brucal's to the infant, who was delivered byemergency Caesarean section on July 20, 2005.Brucal, a nurse's aide, worked at Alden Village from September 2004until his arrest Nov. 1, 2005."What I find especially disturbing ... is that he sexually assaulted aseverely handicapped woman who was unable to fight back or to evencommunicate to others what had happened," DuPage County State'sAttorney Joseph E. Birkett said in a statement.The Illinois Department of Public Health fined Alden Village $10,000for lacking oversight and mishandling its investigation of the incident.State officials said the facility failed to conduct a completeinvestigation into the alleged assault, and treated the swelling ofthe woman's abdomen as constipation despite nursing staff reports thatsaid she showed signs of pregnancy.As a result, the woman didn't receive prenatal care and tookanti-convulsive medication until she was seven months pregnant, theagency said.The victim's mother now has custody of the baby, and filed a lawsuitlast year in Cook County against the facility, the management company,her daughter's doctor and Brucal.Copyright © 2006, The Associated Press


Teen admits raping patient - Ex-aide pleads guilty in assault ondisabled womanNovember 16, 2006A former nurse's aide for a Bloomingdale nursing home pleaded guiltyWednesday to raping a profoundly brain-damaged resident who later gavebirth to a daughter.Reynaldo Brucal, 19, faces 6 to 30 years in prison at sentencing forassaulting the 23-year-old woman, who suffers from cerebral palsy andcannot walk or communicate. She was 7 months' pregnant before staffersat the Alden Village Health Facility for Children and Young Adultsnoticed in June 2005. Police were called after doctors confirmed the pregnancy. Her baby was delivered by emergency Caesarean section in July 2005. DNA tests were ordered for all male staff members of the facility andthe results indicated Brucal was a one-in-356 million match to thechild, said DuPage Assistant State's Atty. Robert Berlin. When police confronted Brucal, he initially denied any sexual contact. In November 2005, he confessed, claiming that a latex hospital glovehe improvised as a condom failed, Berlin said. Brucal pleaded guilty Wednesday to aggravated criminal sexual assault. DuPage County Judge George Bakalis told Brucal, who is Filipino, "I can assure you that after any jail sentence you will be deported."Brucal, a Schaumburg resident, is being held without bond as he awaitssentencing. Bakalis will set the sentencing date Dec. 13, when apresentencing report is due.Brucal never looked toward his parents or the victim's family onWednesday as he answered Bakalis' routine questions. The woman, who is now living in another nursing home with her similarly disabled twinsister, was not present."We're glad he might get his due," said her grandmother, JoElla Gerdes.Looking at photographs of her granddaughter sitting in a wheelchairwith her infant on her lap, Gerdes said: "There's no communication between the two. And my granddaughter just wonders what is this lump on her lap."The victim's mother, Cheryl Hale-Crom, is raising the 16-month-oldchild. Gerdes said her family remains concerned about the child's slow development, saying she has had seizures.The Illinois Department of Public Health fined Alden $10,000 for lackof oversight and mishandling its investigation of the incident. The family has filed a civil lawsuit against the facility.DuPage County State's Atty. Joseph Birkett said Brucal "was entrustedwith [the patient's] care. He betrayed that trust by raping her. It isespecially disturbing that he sexually assaulted a severelyhandicapped woman who was unable to fight back or even communicate toothers what had happened."abarnum@tribune.comCopyright © 2006, Chicago Tribune

Study Finds Discrimination Against Disabled Patients (women)

Multiple Medical Problems Make Breast Cancer Treatments Harder forSome
By MARISSA WEISS,
M.D.Nov.6, 2006- Audrey Robinson, now in her 50s, was a 10-year stroke survivorwhen she was diagnosed with early stage breast cancer. The stroke left Robinson visibly disabled. One side of her body is entirelylimp and motionless. Robinson walks with a complex cane, and uses herworking arm and leg to drag and support her weak side. Although Robinson's disability made her a veteran of the health care system,she was unprepared for the way the breast cancer surgeon treated her. She waited more than four hours to enter an examination room.But even when the doctor did arrive, he didn't treat Robinson with therespect she might have expected. "After making us wait. the door swung open, the doctor swooped in andproceeded to make me feel worthless," Robinson says. "No apologies weremade. He was abrupt, impatient, and never looked me in the eyes. I could'vebeen there with horns on my head and he wouldn't have noticed."I'm not the kind to speak up but I did," she says.Her story came as a real surprise to me - I happen to know the offendingsurgeon and have always known him to be caring and respectful. But, as a newstudy suggests, the surgeon's poor manners might have been related toRobinson's disability. Women with early stage breast cancer who are also disabled are less likelyto be offered today's best treatment options, according to researchpublished in today's Annals of Internal Medicine.For example, lumpectomy (removal of the breast cancer) followed by radiationof the rest of the breast is just as effective a treatment as mastectomy(removal of the whole breast). And a woman who undergoes lumpectomy doesn'tnecessarily lose her breast the way she would from a mastectomy. But women with disabilities were 20 percent less likely to be offeredbreast-saving treatment, according to the study. And the disabled women whounderwent lumpectomy were about 20 percent less likely to be given necessaryradiation after lumpectomy. Every woman's life is precious and deserves the best care possible. So, whydoes this happen? Unfortunately, the research is somewhat true. Patients with multiple medicalissues need a lot of attention in the doctor's office, and doctors tend tobe impatient. It turns out that many complex factors influence these health caredecisions. * Related: www.breastcancer.org<http://abcnews.go.com/Health/www.breastcancer.org> * Related: Health Problem? <http://abcnews.go.com/US/story?id=2619668>Concern? Ask Us

Women who are disabled tend to have limited financial resources, insurancecoverage, social networks, transportation options and back-up plans. Adisabled patient may have nowhere to turn in case of bad weather, a brokenwheelchair or a no-show transport team. Disabled patients also tend to have other medical problems and emotionalchallenges that can be almost as threatening and all-consuming as theirbreast cancer. For example, dialysis patients have to juggle hours ofdialysis treatment with their daily radiation therapies.Many of these challenges can make the logistical demands of regulartreatments hard to meet. So what can a woman do?Each woman who faces breast cancer - fully able or disabled - needs to workcarefully with her doctor to figure out her best treatment options againstbreast cancer. While weighing the pros and cons of any treatment option, ask your doctorabout other medical issues.You, as a patient, own your choice. Any given treatment decision may requirespecial arrangements - assisted transportation, coordination with othertherapies like dialysis, etc. It may help to ask for a social serviceconsultation, to find out all of the resources that are available to you. Dr. Marisa Weiss is president and founder of www.breastcancer.org

The wrong diagnosis, the wrong operation, the wrong medication (or the right medication, in the wrong dose) - preventable medical errors kill an estimated 100,000 Americans each year. It's the eighth leading cause of death in this country!
Two million of us pick up infections each year at the hospitals that are supposed to make us well. Some 90,000 die from those infections. Many more suffer needlessly, are injured or worse.
Research has found that Americans today have a 50/50 chance of getting the right care at the right time. That's no better than a toss of a coin. And for women and people of color, the chance of getting poor care is even greater.
http://www.qualitycarenow.org/

In case you didn't catch it earlier, the following story was posted about a month ago about disability reproductive rights. Anyone got follow-up? Please contact us.

August 24, 2006

NEW YORK — C-FAM) The government of Nicaragua led a charge of 23 nations at UN headquarters this week objecting to the inclusion of "sexual and reproductive health services" in what will become a treaty on the rights of the disabled. Nicaragua's UN Ambassador objected to the phrase because he said it was vague and undefined. He also called the phrase too controversial to include in the document.

Negotiators are meeting in New York for what they hope will be the final two weeks of a multi-year negotiation that will lead to a hard-law treaty protecting the rights of the disabled. Following Nicaragua's objection was a wide range of governments including United States, Honduras, Egypt, Costa Rica, Bangladesh, Tanzania, Tunisia, Qatar, Kenya, and the Philippines. In a move that surprised everyone in the room even usually liberal Norway joined in the objection to including "sexual and reproductive health services" into the document.

The controversial nature of the phrase is that though the UN has never defined the phrase, it has been used by radical non-governmental organizations and by some UN committees to get governments to legalize abortion. "Reproductive health" has only ever been defined once as including abortion and that was in the non-binding document produced by the Cairo Conference on Population and Development. It has never been defined in a hard-law treaty which would be binding on nations that ratify.

Despite the overwhelming opposition, the committee chair, Ambassador Donald McKay of New Zealand, insisted that nations continue to negotiate the matter. Peter Smith, UN representative of the London based Society for the Protection of Unborn Children remarked "even the chairman seems to be negotiating.

" Traditionally in UN meetings if even a few countries object to certain language it is removed since the UN works by consensus. It was clear as the afternoon progressed that the chairman wanted to retain the controversial language even though so many countries objected. At one point he was even admonished by the Egyptian delegate for not remaining impartial.
A number of governments spoke in favor of the language, including the European Union, Canada, Peru, Cuba, and Brazil.

Another surprising development at this negotiation was the active participation of non-governmental organizations in the actual governmental negotiation. Traditionally, NGOs are allowed into the room and are allowed to press their case with delegates between sessions. In this meeting, however, the chairman is allowing NGOs to speak during negotiations on the specific paragraph being negotiated, just like governments.

The other controversial language the negotiators have to decide by the end of next week is whether the disabled have to the right to "experience their sexuality." Though one knows what this phrase really means, it is being supported by the European Union and other liberal governments. In negotiations Thursday afternoon, 21 countries objected to this phrase.
It is likely that the debate on these phrases will continue into next week and will likely not be decided until the wee hours on the final day.

Copyright 2006 - C-FAM (Catholic Family & Human Rights Institute).
Permission granted for unlimited use. Credit required.

You gotta get girls with disabilities started early on understanding themselves and their rights. Check out the workshop posting below. How fabulous can this get? This training will be run by two FRIDA members. Get in touch with them ASAP if you're interested because they've been getting calls from around the world about this. It doesn't matter if you're from Smalltown USA or outside the US though. Just call these guys today to see what's up.WORKSHOP ALERT!!!!!!!!!!!!!!!!!!!

Between Me You and Liberation:
Starting a Group for Girls with Disabilities

The creators of a groundbreaking program for girls with disabilities are hosting a 3-day intensive national workshop for women interested in learning more about how to build a gender-conscious, disability proud, safe space for girls.

This very interactive workshop will take you through everything you need to think about to start your own group for girls with disabilities including:
-recruitment
-curriculum development
-group dynamics
-capacity building
-and more!

When: May 2007 (exact days to be announced)

Where: Access Living of Metropolitan Chicago
(one of the country's best known Centers for Independent Living)

Cost: FREE ($500 stipend available to help you cover costs of attending)

Only 12 participants accepted.

It will be designed and facilitated by the co-coordinators of the Empowered Fe Fes (Fe Fes is slang for female), an ongoing group for girls with disabilities since 1999. The Fe Fes are best known for their award-winning movies about disability identity, bullying, and sexuality.

Are you interested?
call Susan Nussbaum or Ana Mercado
Voice: 1-800-613-8549
TTY: 1-888-253-7003
or email:
snussbaum@accessliving.org
amercado@accessliving.org

I'd rather go to jail than die in a nursing home, because in jail at least you'd get some pads! Mary in Chicago let us know that she visited THREE bathrooms in the Chicago jail at 26th and California, and each one had a nice big box of pads. So women in real jails get this, and women in jails masquerading as "nursing homes" and "institutions" get...what? Talk about oppression! Now see, we have nothing against individual workers, but we sure do have something against the people at the top who dictate how the system's run. You wanna know what the grassroots see? Check out this page of first-person testimony from ADAPT, collected earlier this year. It's gonna make you cry tears of rage, cause NOBODY deserves to be treated like this: http://www.adapt.org/freeourpeople/aar/nash06/transcript.htm.

In response to some questions about the Pad Patrol, FRIDA is fully aware that in cases where nursing homes or institutions fail to provide sanitary napkins as dictated by federal law, legal recourse is necessary in case where informal negotiation is not successful. We are in full agreement that systemic change is the only way to ensure long term justice. We do, however, feel that systemic change can be achieved on multiple levels. Some folks have asked whether, in distributing sanitary napkins and tampons to nursing homes, we would enable the nursing homes to continue evading the law. Our viewpoint is as follows...

First, in conducting outreach for a pad drive (which has reached as far as Australia) we are exposing a problem in a system, a problem that many feel a personal connection to. Anyone would be shocked by the idea that someone would have to blow their whole allowance on sanitary napkins or else sit in a crust of their own blood. Add to that the fact that showers are often regulated and you must bathe on a schedule. Sometimes, by relating to something so graphically everyday, we can push awareness of the problem to a critical mass of public opinion.

Second, the larger problem beyond the lack of sanitary napkins and the suppression of periods is the entire system of nursing homes and institutions in which so many people with disabilities become trapped. While the average person will be shocked by the pad issue, they will hopefully also learn a little to care about the wider problems of institutionalization. FRIDA feels, as does ADAPT and many other groups, that we would much prefer to live in our own homes with community supports for our needs, rather than in nursing homes, institutions or group homes.
In the end, we see that a feminist issue is really a human issue.

Third, and maybe most pragmatically, the woman who is having her period in 3 days cannot wait for a lawsuit to be settled in five years. There is a final question which FRIDA needs to answer to the public, and that is whether this problem really exists, and whether there are women who are willing to speak out about this issue. There are in fact such women but at this time their identities are protected by confidentiality.

FRIDA is working to identify women who are willing to speak out. If you or someone you know is willing to testify and let people know what's really going on with women's rights in nursing homes and institutions, get in touch with Monica at (312) 253-7000.

So, what's the deal with Open Wide and the Pad Patrol? FRIDA has two new campaigns being initiated in this very busy month of September. The first, Open Wide, is a campaign to survey and increase the accessibility of hospitals in the Chicago area. That includes physical building accessibility but also covers the accessibility of diagnostic equipment and the accessibility of services provided. The second campaign, the Pad Patrol, addresses the underground problem of women in nursing homes and institutions being forced to pay for sanitary napkins out of their SSI money (they only get a $30 allowance each month). In addition, the Pad Patrol seeks to bring to light the fact that many women with disabilities are still being sterilized or put on a birth control program without their full consent, so as to lessen or eliminate their periods. They are being denied their right to choose how to manage their menstrual cycles. The Pad Patrol is initiating a drive to collect the stories of these women and to collect pads and tampons to distribute to women with disabilities in need of them. If you would like to donate some pads or tampons, please send them to FRIDA c/o Sarah Triano, 614 W. Roosevelt Road, Chicago IL 60607. FRIDA can also take checks or cash to pay for these items; checks should be made out to FRIDA with a note for "pads and tampons". Smile. Thanks for listening out there.

Womyn around the world, many apologies for the lack of regular updates this year. Many thanks to FRIDA members who have been posting stuff in the name of getting info out there to womyn who need it! Everybody's incredibly busy so any time anyone has to give to FRIDA is very precious. Thank you. I want to make sure that people know that our very next FRIDA meeting is on Tuesday, October 17 from 2:30 to 4:30 pm at Access Living, 614 W. Roosevelt Road in Chicago. For newbies, our meetings are just once a month, but our committees are on a separate schedule. For accommodation needs, please contact Sharon at slamp1@uic.edu because a) you need the accommodation and b) she's fabulous. For general info about FRIDA, try calling Monica at (312) 253-7000 during work hours.

Local Medical Practice Discriminates Against More Deaf Patients
After Lawsuit Filed, More Patients Complain
Denver

- Today the Center for Rights of Parents with Disabilities at theColorado Cross-Disability Coalition ("CRPD"), filed an amended lawsuit inthe federal district court of Colorado against a Lakewood medical practiceon behalf of CRPD and several members. The suit alleges Cohen & Womack,M.D., P.C., doing business as Red Rocks OB-GYN, refuses to provide signlanguage interpreters for deaf patients.Annette Guerrero is a Red Rock OB-GYN patient who is deaf. Ms. Guerrero and her husband, who is also deaf, went through her entire pregnancy without knowing simple facts about the progress of her pregnancy. She never knew her weight or the size of her baby. When she was diagnosed with gestational diabetes, the doctors and sta ff were unable to explain how she was to manage her condition."After we filed the first complaint, Dr. Cohen was reported to claim thelawsuit was based upon a miscommunication," said Carrie Ann Lucas, thedirector of the CRPD and lead counsel in the case. "It's certainly amiscommunication - an intentional miscommunication caused when Red Rocks OB-GYN refused to provide sign language interpreters for its patients. ""It's shocking that Red Rocks OB-GYN provides Spanish interpreters to ensureSpanish speaking clients have effective communication, but that they don'tdo the same for Deaf patients," said Jennifer Pfau, one of the plaintiffs inthe case. "It's not simply shocking, it's shameful," she said.The ADA requires health care providers to ensure effective communicationwith patients through the provision of interpreters, assistive technology,and other auxiliary aids and servicesThe plaintiffs ask the Court to order the medical practice to provide signlanguage interpreters to deaf patients to ensure that they understandmedical communications. The complaint also requests damages for theplaintiffs. The CRPD combats discrimination that affects parents with disabilities.The Colorado Cross-Disability Coalition is Colorado's largest state-widecross-disability organization and has several thousand members acrossColorado.A copy of the amended complaint can be found athttp://ccdconline.org/legal /cohen_womack

Are you a woman with a disability? Are you sick and tired of discrimination? Then Feminist Response in Disability Activism (FRIDA) is for you. FRIDA knows things aren’t right when:

Women with disabilities can’t get Pap smears because most doctors’ examining tables aren’t accessible

Women with disabilities get left on the curb by bus drivers who don’t want to stop for wheelchairs

Women with disabilities who live in nursing homes have to pay for pads and tampons out of the $30 left out of their SSI each month

Women with disabilities are given the wrong information by their doctors, sometimes resulting in catastrophic health situations

Women with disabilities who receive home services are sometimes told their children should be acting as their personal care assistants

Women of color with disabilities are treated like they are stupid and don’t know their rights

Women with disabilities are not provided with interpreters

Women with disabilities aren’t treated respectfully on paratransit

Women with hidden disabilities don’t get the respect they deserve

Women with disabilities go to jail because no one understands their disability

Women with disabilities don’t receive the proper medical care or accommodations in jail

Women with disabilities are considered not sexy and asexual

Women with disabilities have doctors who won’t listen to them

Women with disabilities aren’t told about birth control

Women with disabilities don’t know where to get help on sex issues

Women with disabilities don’t have access to diagnostic test equipment that fits them

Women with disabilities are easy victims for rape and domestic violence

Women with disabilities who need to exit a bus are forgotten by bus drivers, who say “Oops! I forgot you were there!”

Come to a FRIDA meeting and let’s do something about this! Bring your concerns for women with disabilities to our next meeting on Monday, August 21, from 2 to 4 pm at Access Living, 614 W. Roosevelt Road. An ASL interpreter will be present. For accommodations, please contact Sharon Lamp at slamp1@uic.edu. For more info about FRIDA, call Monica at (312) 253-7000 (v) or Amber at (312) 253-7029 (TTY) or asmock@accessliving.org.

`This was a tragic family situation'

Mom held in slaying of 34-year-old woman with cerebral palsy

By James Kimberly and Angela Rozas, Tribune staff reporters. Tribune staff reporter William Presecky and freelance reporter Rita Hoover contributed to this report
Published April 5, 2006

Kane County authorities Tuesday charged a St. Charles woman with the stabbing death of her disabled 34-year-old daughter, calling the incident that also involved their car plunging off an embankment a family tragedy.

First-degree murder charges were filed against Betty C. Whitten, 57, who was pulled from the mangled wreckage of the car Monday in downtown St. Charles along with the body of her eldest daughter, Nyakiambi Whitten.

The daughter, who was diagnosed with cerebral palsy and developmental disabilities at age 2, had been stabbed three times with a kitchen butcher knife in the family's home in the 42W500 block of Hawk Circle in unincorporated Kane County on Monday morning, Sheriff Kenneth Ramsey said.

Soon afterward, Betty Whitten crashed the family's 2002 Hyundai sedan through a guardrail near the Prairie Street Bridge. It flipped on its roof in Mt. St. Mary's Park along the Fox River. Police said they believe Nyakiambi Whitten was dead before she was put into the car.

Ramsey would not discuss a possible motive for the crime other than to say that Betty Whitten was under pressure from circumstances in her life and from caring for her disabled daughter.

To read more please see http://www.chicagotribune.com/news/local/southsouthwest/chi-0604050257apr05,1,528938.story.

`This was a tragic family situation'

Mom held in slaying of 34-year-old woman with cerebral palsy

By James Kimberly and Angela Rozas, Tribune staff reporters. Tribune staff reporter William Presecky and freelance reporter Rita Hoover contributed to this report
Published April 5, 2006

Kane County authorities Tuesday charged a St. Charles woman with the stabbing death of her disabled 34-year-old daughter, calling the incident that also involved their car plunging off an embankment a family tragedy.

First-degree murder charges were filed against Betty C. Whitten, 57, who was pulled from the mangled wreckage of the car Monday in downtown St. Charles along with the body of her eldest daughter, Nyakiambi Whitten.

The daughter, who was diagnosed with cerebral palsy and developmental disabilities at age 2, had been stabbed three times with a kitchen butcher knife in the family's home in the 42W500 block of Hawk Circle in unincorporated Kane County on Monday morning, Sheriff Kenneth Ramsey said.

Soon afterward, Betty Whitten crashed the family's 2002 Hyundai sedan through a guardrail near the Prairie Street Bridge. It flipped on its roof in Mt. St. Mary's Park along the Fox River. Police said they believe Nyakiambi Whitten was dead before she was put into the car.

Ramsey would not discuss a possible motive for the crime other than to say that Betty Whitten was under pressure from circumstances in her life and from caring for her disabled daughter.

"Reviewing the totality of the circumstances, this was a tragic family situation," he said.

On Tuesday, Betty Whitten's husband, Earstin, 57, struggled to make sense of events, saying it is out of character for his wife. He has not talked to her since the crash, he said.

"There are different emotional stages in a person's life. Clearly ... something was not right," he said.

"I would like to know why this happened. I would like to see my wife get whatever assistance she needs to become whole."

Ramsey said Betty Whitten is "remorseful and emotional" and under suicide watch in the Kane County Jail, where she was being held in lieu of $2 million bail. She is scheduled to make her first court appearance Wednesday morning in Kane County court.

Earstin Whitten said his family had "normal issues" but no extraordinary problems. Nyakiambi, whose name means "first daughter" in Swahili, was "an innocent, loving, caring person," who was keenly perceptive, he said.

She was educated in special education programs in St. Charles schools and at Elgin Community College until she was 21. Her father said she loved music, eating at restaurants, and helping him in the vegetable garden and the kitchen, but she required care at all times. Cerebral palsy and vision problems made her prone to falling, so she needed help walking, he said.

"It is hard," Earstin Whitten said, his voice breaking. "I know how much she cared for me. She just enjoyed my company and the interaction. I would speak to her like she was an adult, and she enjoyed it."

Friends said Betty Whitten is a creative artist who enjoyed knitting and quiltmaking and was rarely seen out of the company of her daughter. She taught craft classes part time, her husband said.

"She certainly seemed like she had patience with her daughter whenever she came in here," said Annie Kordesh of the Fine Line Creative Arts Center in St. Charles, where Betty Whitten frequently attended classes in knitting and other crafts.

She also was active in her community, organizing a knit-a-thon at Pheasant Run Resort in St. Charles to benefit the Snug Hug for Kids clothing drive. The hats, mittens and scarves go to the Children's Home & Aid Society of Illinois.

"She never seemed out of sorts or expressed anything negative about her [daughter] or anything like that," Kordesh said.

Earstin Whitten said he learned of trouble in his home Monday morning from a frantic telephone call made by his 24-year-old daughter who was home with her mother and sister.

"She was in fear for her life when she ran from the house. She flagged down somebody and called from their cell phone," Whitten said. She also called police.

Sheriff's deputies responded to the 911 call and found blood at the home. By the time Earstin Whitten arrived from his job in Northbrook, police had cordoned off his house and refused to let him inside, he said.

While sheriff's police were at the well-kept raised ranch house in a cul-de-sac of similar homes on large lots, a St. Charles police officer happened upon the Whitten family car stopped on Prairie Street just west of the bridge over the Fox River.

The officer thought the car had stalled, police said. He turned on his emergency lights and tried to approach the driver, but Betty Whitten put her car into gear and sped off the side of Prairie Street, police said.

The officer radioed for help, and rescue workers took Betty Whitten and her daughter to Delnor-Community Hospital in Geneva.

Nyakiambi Whitten was pronounced dead in the hospital. An autopsy Monday determined she had died of stab wounds, but found no defensive or self-inflicted wounds on her body, said Kane County Coroner Charles West.

Her mother was released from the hospital Monday afternoon, a spokesman said.

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jkimberly@tribune.com

arozas@tribune.com

Copyright © 2006, Chicago Tribune

Jones' Secretary Was Not Cool.

Women, I called IL Speaker of the House Emil Jones' office the other day to request an increase in asset allotments for seniors, on a designated call in day, and the secretary tried to swat me down!

I called in using NexTalk, which if you are unfamilar with it is a software program that functions like a TTY. When I called, the secretary goes, "A relay call? Oh, I don't have time for this. I am guessing you are calling about the senior issue?" How dare she assume why I am calling, and how dare she say she doesn't have time for a relay call? I am perfectly aware that my calls take a long time...it's taking some of my sweet time away too! And I am feeling a little hearing people-Jim Crow about this. Hearing Calls Only. So I gave her an aggrieved response but added that she should remind Speaker Jones to support an increase in allotments. Can you retaliate and advocate at the same time? Hmm.

I wonder if she heard me.

FRIDA as Public Testimony....Every Day.

Today I was at the Chicago Foundation for Women's Summit on Reproductive Rights. While getting my vinegar stirred up there, I've also noticed lately we haven't been posting on this poor site so today marks my effort to get some more vinegar out in the public discourse...and piss and spit and what have you.

One of the panelists speaking today was a current member of the Empowered Fe Fes. Among other things, she related the story of going to the ob-gyn with her mom and having the doctors mistake her mom for the person who needed services. Now, this girl is a wheelchair user, and basically, she said, the doctor couldn't believe she was actually having sex and might actually need some of the ob-gyn services.

I know lots of women with disabilities will say that's not the first or last story of discrimination they've ever heard, but my point in briefly relating it right now is that WE MUST TESTIFY. The barriers we encounter every day are unfair, unjust and all about bias. If we don't speak up about it though, it never happened.

So, I am calling on you WWDs out there (Women With Disabilities...kinda like WMDs, huh?) to share some of your experiences and insights on this site.

I, for one, could really do without the communication stress and hearing bias involved in going to the doctor. To the receptionist: "I'm deaf, make sure I see you when you call me!" To the nurse: "I'm deaf, can you face me so I can read your lips?" To the doctor: "Can you face me so I can read your lips, and also, can you spin that stool up a few inches so I can see your mouth better?" To the accounts person: "Can you show me to whom I need to address this check?" Yeah, I'm still someone who is in an ongoing process of becoming empowered, so I haven't yet seen the doctor with an interpreter. In low-stress situations like getting my sinuses checked, I'm not too worried, but you can bet I'll call the interpreter if, for some, reason, I get wind that I need surgery. I don't focus well when I'm really stressed out.

I will add this observation on functioning in a hearing environment in this kind of situation: yes, I am constantly guessing as to what the doctors will say. In lipreading it's all about the context. So, basically when I visit the doctor, I have two visits: the one I guess at, the one that happens, and possibly also a third...the one I missed cause I wasn't using an interpreter.

Maybe I should just go see the signing doctors at Mt Sinai, but then I wouldn't get to fight AND get checked up too. Piss and vinegar...well. I just want to go see a doctor in a place that is geographically convenient for me, which Mt. Sinai is not. But next time I go see the doctor, I'll request an interpreter and report on how THAT works out.

So I'm not talking about a jaw dropping instance of discrimination here...but I am TESTIFYING. WWDs, FRIDA wants to hear from you!