"On the Bench, With Fairness and Empathy"

That's the title of this article by Jim Dwyer in yesterday's New York Times that discusses Judge Sonia Sotomayor's decision in Bartlett v. New York State Board of Examiners (in short, Ms. Bartlett brought legal action against the New York board of law examiners under the ADA Act, The Rehabilitation Act (504), and the Fourteenth Amendment stating that she had been deprived of due process and equal protection under the law following the Board's refusal to provide accommodations for her learning disabilities - there is a summary of the case and the decision here). Judge Sotomayor, of course, has just been nominated by President Obama for appointment to the US Supreme Court to replace retiring Justice David Souter. Here is an excerpt from the article:

The woman sitting in the witness box was presented with a printed page, and asked to read it aloud. She used two hands and her lips. One index finger tracked the words left to right across the page; the other moved down the lines, from top to bottom. She mouthed the words to herself before speaking them. She read the word “indicted” as “indicated.”

The judge, Sonia Sotomayor, glanced at the clock. It was 11:13. At the end, she had a question for the witness, Marilyn Bartlett:

“What did you just read?”

“I haven’t got a clue,” Dr. Bartlett replied.

“Neither have I,” the judge said.

Although the passage was just 426 words, it had taken Dr. Bartlett — then a professor at the New York Institute of Technology, with a doctorate in education, a law degree and a verbal I.Q. measured as “superior” — 11 minutes to read it, the sentences so excruciatingly drawn out that no one could remember their meaning.

For 21 days in 1995, Judge Sotomayor heard testimony in the case of Marilyn Bartlett v. New York State Board of Law Examiners, a lawsuit brought under the Americans With Disabilities Act against the state agency that administers the bar exam. Because of her problems with reading, Dr. Bartlett wanted more time to take the exam and permission to use a computer to write the essays. The board turned her down.

The full article can be read here.

Fighting for her rights

From The Times of Malta:

An 18-year-old girl is fighting for her right to access clothes shops, restaurants and cinemas with her wheelchair as she is determined to lead the same kind of life as any other teenager.

"Like others, I enjoy shopping and going out with friends. However, most of the time I end up disappointed when I realise I can't enter the premises because the only way in is by going up steps. I feel this lack of access is shameful and erodes my rights," Roberta Magri said.

A few days ago she had to give up watching a film at the Eden Century cinemas in Paceville because it was being shown in a theatre that was not suitable for wheelchair users.

The experience was the last straw for the teenager. When she got home, disappointed and angered, she wrote a letter to the Prime Minister expressing her frustration in the name of all wheelchair users.

Ms Magri has had enough of going to stores or cafes and having to turn back or wait outside because there is no ramp or it is too steep. She is also tired of trying to manoeuvre her way through bumpy pavements that force her onto the road, often pitted with potholes.

She is asking the authorities to take the issue of accessibility seriously as it is turning the lives of wheelchair users into a hectic obstacle race.

Speaking at her home in Ibrag, Ms Magri said that before going to the cinema she had phoned and was assured that the film she wanted to watch was accessible to her - only to be disappointed when she turned up. She was told she would have to get up from the wheelchair if she wanted to see the film there and a staff member offered to help her out. When she asked to stay by the door, she was not allowed due to safety regulations.

Nine of Eden's 17 cinemas are not accessible to wheelchair users. The ones that are accessible are located in the new part of the complex, which was built after the Equal Opportunities Act came into force in 2000. But Ms Magri insisted: "Don't I have the right to watch a film in a cinema because I am in a wheelchair? Do I have to be constrained as to which films I choose?"

The young woman stressed she would not allow her disability to take over her life.

"People often complain and don't do anything about it. I decided to try and do something, so I wrote this letter... I hope that it will not fall on deaf ears."

The chairman of the National Commission for People with a Disability, Joseph Camilleri, said the letter had been forwarded to him by the Prime Minister's office and the commission would be looking into Ms Magri's complaints.

The issue will be discussed during a meeting of the commission's legal unit tomorrow. However, he explained that buildings built before the Act came into force were not bound to ensure wheelchair access.Mr Camilleri added that, according to an agreement with the Malta Environment and Planning Authority, the commission was to vet buildings "of major use" for accessibility.

However, he said, not all plans were forwarded to the commission for vetting. Also, due to a lack of resources, the commission was not always able to ensure that buildings were built according to the approved plan.

Ms Magri's cry to developers is to keep people like her in mind: "These occurrences can have a negative mental impact on an individual... Without wanting to, you feel different despite the fact that you try to lead a normal life," she said.

The House has passed a major bill that will make it easier for workers with disabilities to prove discrimination

The bill, which was approved 402 to 17, "would explicitly relax some stringent standards set by the court" and says that disability is to be "construed broadly to cover more physical and mental impairments."

The White House said that although President Bush "supports the overall intent" of the House bill, he was concerned that it "could unduly expand" coverage and significantly increase litigation.

The full story, from The New York Times, is here.

News I'd prefer not to print

Reports in the news yesterday about the beating of an autistic woman by employees of a Long Island group home. It is said that the 50-year-old woman was beaten with a wooden coat hanger and a shoe, slapped in her head, and kicked by two, possibly more, employees of the home. The attack was captured by a camera hidden in a vent.

Read the full story here .

The director of the home comments here.

Kristina Chew at Autism Vox has a post about it here, along with some comments.

AMA Journal Doc-to-Doc Exchange

Thanks to a heads up from Emi Koyama of Portland, Oregon, FRIDA has learned that the June edition of the Archives of Pediatric and Adolescent Medicine (APAM) features a letter exchange in their "Pediatric Forum" section, which is basically like letters to the editor but allows for authors of articles to respond to letters. The APAM is published by the AMA but maintains that it is editorially separate from the AMA.

The letter exchange addresses the omission of Ashley X's breast bud removal in the original APAM article on Ashley X in October of 2006 and whether the article was misleading as to the intentions of Ashley's parents and doctors. Here goes:

From the Archives of Pediatric and Adolescent Medicine Volume 161, June 2007, The Pediatric Forum:

Only Half the Story:

The authors of the article “Attenuating Growth in Children With Profound Developmental Disability: A New Approach to an Old Dilemma” discuss the ethics of inducing intentional growth stunting to facilitate the care of a child with developmental disabilities. However, according to TIME magazine, these authors are telling only half the story. In their article in the Archives, they discuss administrating high-dose estrogen to fuse the child’s epiphyses and limit growth. However, the TIME article also states that the child’s breast buds were surgically removed to decrease the chance of her developing fibrocystic disease or being uncomfortable with her rehabilitative equipment. She also underwent a hysterectomy to prevent problems in the future related to menses. Thus, it appears as if the child’s family did not merely wish to limit her size to facilitate taking care of her; they also wanted to infantilize her and remove any evidence of puberty and maturation. In this they were aided and abetted by their physicians. The argument that menses would be messy or that she required a prophylactic mastectomy for fibrocystic disease cannot seriously be considered as medical indications for her surgery. If so, why not also do a colostomy and urinary diversion to facilitate nursing care? Why not do a prophylactic appendectomy to prevent potential episodes of appendicitis?

I consider this article, with its emphasis only on the ethics of height reduction, to be very misleading.

Carole L. Marcus, MBBCh

Correspondence: Dr. Marcus, Pulmonary Division, Children’s Hospital of Philadelphia, 5th Floor Wood, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104 (marcus@email.chop.edu).

(***Note from FRIDA: the TIME article Marcus refers to is the January 11 article titled “Pillow Angel Ethics” by Nancy Gibbs. Gibbs published two stories on Ashley X, one from the parents’ standpoint and one from the disability community’s standpoint, essentially bisecting the dialogue and keeping both sides well away from one another.)

***

In Reply

Carole Marcus suggests that because we did not discuss the patient’s breast surgry, our article told only “half the story” and was therefore misleading. We would respectfully disagree. The purpose of reporting this case was to focus attention and debate on the practice of attenuating growth in children with severe developmental disability as a strategy for improving the quality of their lives. There are many aspects of this patient’s medical care that do not directly bear on this issue and were not reported. The hysterectomy was included in the discussion only because it was directly relaed to the complications of estrogen treatment. The medical rationale for hysterectomy is well covered in the article. Breast bud removal was a completely separate request and raised a different set of issues that were unrelated to growth attenuation (as was the incidental appendectomy that was performed).

These several different medical and surgical interventions were each done for different reasons and were considered to be separate requests. Lumping them into a monolithic “Ashley Treatment” is a convention of the parents and the media, not her physicians. The exclusion of breast bud removal fro our discussion should make clear that we do not consider that procedure to be a necessary or routine part of growth attenuation therapy.

Finally, we would also disagree that the motivation of these separate medical and surgical interventions was to “infantilize: the patient and remove any “evidence of puberty and maturation.” It was certainly not a motivation of anyone involved with the decision. The motive was always improving the quality of this child’s life. While this patient will remain short (4’6” [1.4 m] is hardly infant size) and will not develop adult female breasts, she will continue to produce estrogen and mature normally.

Daniel F. Gunther, MD, MA
Douglas S. Diekema, MD, MPH

Correspondence: Dr. Gunther, Division of Pediatric Endocrinology, Children’s Hospital and Regional Medical Center, 4800 Sand Point Way NE, Seattle, WA 98105 (dan.gunther@seattlechildrens.org).

***

What do you all think of this? Please recall that the APAM declined to print a similar letter from FRIDA, stating that they had decided to publish other articles with similar content.

In my personal opinion (not officially speaking for all of FRIDA here, though certainly speaking as a person working to see concrete social change come out of the problems brough up by the Ashley case), while I am encouraged that the APAM deems the Ashley X issue of enough importance to make the editorial decision to publish the above exchange, and that the APAM's publishing of the exchange will continue to push medical professionals to think about the rights of all human beings, I am bothered by some items in the response from Seattle.

Is health care really a simple matter of so many various small requests to fix this and that? Who is really responsible for understanding the whole picture of the care of any person (as opposed to just the care of people who are unable to communicate for themselves)? Are all of the pieces of the puzzle simply not meant to be pulled together for some greater meaning? This is a bit a la carte here.

In addition, let's remember a couple of other things. Seattle Childrens' WAS the subject of an investigation by the state Protection and Advocacy agency on the case of Ashley X. The hospital did fail to make sure that her legal rights were not protected and so the hospital is now supposed to be complying with a settlement agreement regarding sterilization and the rights of people with disabilities.

Furthermore, Seattle Childrens' pediatric bioethics center hosted a one day conference on the Ashley X issue alone, and the issue was also brought up in last month's pediatric bioethics conference. Clearly there is an effort to get the air clear on whether what was done to Ashley was the right thing to do, and to get people thinking about how to make good decisions.

I think that for Ashley's doctors to step back from the fray and essentially say, "Hey, we were only fulfilling some requests," when in reality they have been embroiled in legal and ethical clean-up, is misleading. Granted, this whole exchange may have been written quite some while back given APAM editorial and printing deadlines, but this, to me, is the big deal:

A society that says it's ok to medically alter someone's body to support what is seen as the average accepted lifestyle norm is not a society that respects people.

Some people may find that perspective hurtful and not respectful of folks (like parents and docs) who want to do the best thing possible. I fully accept that people are well-intentioned, but I firmly believe that we can all together give this whole boat of pain a U-turn and instead work towards building the kind of society that is inclusive of the people that we naturally are (not our altered selves).

In my (again, personal) opinion, I think there are effective action steps that we can take towards making things better. We as a society need better cooperation between the medical community and, well, the rest of us. We need better legal protection and oversight. We need more meaningful public dialogue about disability and medicine. We need more MONEY to protect health care and support community choice. We need meetings, forums, appointments, workshops, conferences, bill-writing, media education, disability inclusion in medical education, and most of all we need PEOPLE who are dedicated and willing to work hard to make these things happen. Some folks already are and I applaud them.

I encourage those who read this blog to post your thoughts. If you don't say them, we won't know what you're thinking. I say that with lots of of FRIDA love, but with total FRIDA seriousness.

Amber Smock

New York Court Approves Electric Shock Against a Woman's Will

In a 7/2 decision, the New York Court of Appeals has turned down the appeal of Simone D., who had sued not to be put through electroschock again. According to the Bazelon Center’s report, Simone D., who is Hispanic, “had already received 148 ECT treatments over 12 years in the hospital. The hospital sought permission to administer another 30 treatments against Simone’s will.”

From the majority opinion:

At a hearing held on the petition, Dr. Ella Brodsky, a licensed psychiatrist and the person who administers the ECT at Creedmoor, testified that the appellant suffers from a “major depressive disorder, severe, with chronic features” and was incapable of making decisions regarding her own treatment. In fact, Dr. Brodsky asserted that during a meeting to discuss treatment, at which the appellant, her Spanish-speaking attorney, Dr. Brodsky, and the treatment team were present, the appellant refused to respond or even make eye contact.

A couple of points (for more, see here and here):

1. Electroshock, or ECT, Has No Proven Benefits.

For more information about ECT and it effects, read the paper "Understanding and Ending ECT: A Feminist Imperative" by academic and psychotherapist Dr. Bonnie Burstow.

2. It has been proven beyond reasonable doubt that ECT causes permanent damage to the brain

3. Most Electroshock patients (between two-thirds and three-quarters of patients) are elderly women.

According to the activist website endofshock.com, ECT:

1) This is a legacy of patriarchy, where women continue to be coerced, overtly or subtly into psychiatric treatment.
2) This is also a legacy of sexism, where “’masculine“ stoicism is valued and feminine” qualities such as emotional expression are classified as psychopathological. It is also related to sexism in that social and economic inequality is still a big factor in our society, and understandable stress reactions, sadness and confusion are
interpreted as “symptoms of mental illness.”
3) Women, compared to men, are expected to be passive, and they may be punished or silenced for speaking out and complaining. When a woman is being considered for electroshock, one should ask, “What is important that she not remember and tell about?” Or “What is it that the others do not want to hear or look at?” Often it is abuse, always it is difficult or disruptive conduct that makes others feel uncomfortable or threatened.
4) Women are on average more open to getting help than men. In our psychiatric system, it is assumed that human problems and crises are due to biologically or genetically based “mental illnesses.” The primary treatment is psychotropic drugs, so women reaching for help get drugs, these drugs often do not help or actually worsen their situation; hence, the backup treatment of electroshock is brought into play.
5) Elderly women often cannot handle psychotropic drugs because of aging and infirmity, so are considered prime candidates for electroshock.
6) Women of perimenopausal may be experiencing depressive symptoms due to undiagnosed hormonal or endocrine changes.

4. Simone G. is a native Spanish speaker, but treatment by a Spanish-speaking therapist was tried “for only a few weeks.” Simone G., through her lawyer, has requested that Spanish-speaking theray be resumed instead of ECT, but this request has been refused.

5. What you can do to help.

Reclusive Leftist has provided the following contact information for four New York politicians who can be emailed, faxed or called asking them to intervene on behalf of Simone G.

** Gov. Eliot Spitzer:Complete the web form at: http://161.11.121.121/govemail Phone: (518) 474-8390. Fax: 518-474-1513.

** Lieutenant Gov. David Paterson:He is legally blind and has been charged by the Governor with dealing with disability issues.Complete the web form at: http://161.11.121.121/emailltgovPhone: (518) 474-4623. Fax: (518) 486-4170

** Office of Mental Health Commissioner Michael Hogan:Phone: (518) 474-4403. Fax: (518) 474-2149.

** Peter M. Rivera, Chair, New York State Assembly Standing Committee on Mental Health, Mental Retardation and Developmental Disabilities:Email: riverap@assembly.state.ny.us Phone: (718) 931-2620. Write: 1973 Westchester Avenue; Bronx, NY 10462 USA.

The Wittenberg Center also has some sample comment text you might use and some more background on Simone D.’s case.