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Another Terri Schiavo

My friend who I have written here now must be named. Sylvia Huttel. She has been in and out of a coma for 3 months. She has had moments - as late as last week where she has squeezed the hand of her former fiance and smiled when told about the antics of her 9 month old daughter.

Up until last week, Sylvia ex-fiance has been making all the medical decisions about her care. He has approved several brain surgeries, heart surgery, and leg reconstruction. He was told last week that the time had come to consider removing the machines that kept her alive. He has been struggling with what to do. No decision had been reached.

But this past weekend Sylvia's parents said that he would no longer be making any medical decisions. He would also no longer be able to visit her. They claimed he was a detriment to her. They washed their hands of their child many years ago - and suddenly now they have provided legal documents that they will be making all future medical decisions.

Today he was told to say goodbye as the machines are going to be turned off and her feeding tube removed.

I am now going from a sort of passive supporter of him doing what he thinks is best to deciding I must fight for the right of my friend Sylvia not to die of starvation and torture.

I don't know what I can do. But I am going to do my damnedest to prevent her from being tortured to death. Please contact me if you have any ideas for support. Please contact me if you are fluent in German and would help me research her rights under German law.

Sign the letter to the APA - next post down

You can if you prefer, just post a post here, if you would like to sign onto the letter. Please include your name and your affiliation to the disability community, if any. I signed it!

A Call for Ethical and Unprejudiced Leadership and Practice in the Field

A Call for Ethical and Unprejudiced Leadership and Practice in the Field of Psychology

An Autism & Mental Health Community Letter
October 10, 2007

This letter is to the American Psychological Association (hereafter referred to as APA), and to all professionals in the field of psychology. This letter calls upon APA and professionals who adhere to the APA Code of Ethics to act in a manner that is ethical and consistent with that Code of Ethics. Two recent APA documents are relevant to this call to action. They are, the 2006 "Resolution Against Torture and Other Cruel, Inhuman, and Degrading Treatment or punishment" (hereafter referred to as 2006 Resolution), and the 2007 "Reaffirmation of the American Psychological Association Position Against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment and Its Application to Individuals Defined in the United States Code as "Enemy Combatants"" (hereafter referred to as 2007 Resolution). With fervor, we are advocating for people with autism, developmental differences, and mental health challenges; urgently entreating that they may be given the same respect with regard to human rights as alleged "Enemy Combatants," or any other human beings. As professionals who adhere to the APA Code of Ethics, nothing less than an unprejudiced stance in this matter should be considered acceptable.

Currently, children and young adults with autism, developmental differences, and mental health challenges are being treated in a manner that clearly meets the definition of Torture and Other Cruel, Inhuman, and Degrading Treatment or Punishment, as defined by the two previously mentioned APA documents. The Judge Rotenberg Educational Center (hereafter referred to as JRC) in Massachusetts has a long history of using electric shock, food deprivation and prolonged mechanical restraint, as well as other painful and dehumanizing aversive techniques.

The use of the phrase "effective treatment," does not make such techniques humane or acceptable. Furthermore, attempting to justify them as "treatments" of "last resort" may not be completely accurate. It has been clearly demonstrated that positive behavioral approaches, based on a careful analysis of the functions dangerous or disruptive behaviors may be serving are as effective and more enduring than behavior change techniques based on pain and fear. JRC uses a device that they call the Graduated Electronic Decelerator (GED), to deliver painful electric shocks. Reporters, legislators and others who have experienced the 2-second shock from this device describe it as incredibly painful. A report from the New York State Educational Department noted that JRC was not only using electric shock for dangerous and self-injurious behaviors but also for behaviors that are benign or idiosyncratic such as "nagging, swearing and failure to maintain a neat appearance," or "slouching in a chair." The director of the Judge Rotenberg Center testified at a legislative hearing that one student received 5,300 electric shocks in one day. In his testimony, he stated that over a 24-hour period, this student, a teenager who weighed only 52 pounds, was subjected to an average of one shock every 16 seconds. During some periods, the student was automatically shocked every second if he lifted his hand off a paddle. A copy of the New York State Report can be found here: http://boston.com/news/daily/15/school_report.pdf and a myriad of additional information on the school and its practices can be found by googling the Judge Rotenberg Center.

Proponents of behaviorism have voiced their opposition to these practices. Although the Director of the Judge Rotenberg Center often defends his practices by stating that he was trained by B. F. Skinner, Dr. Skinner made it very clear that he did not condone such practices. At the age of 83, he was interviewed by Daniel Goleman of the New York Times. In an article published August 25^th, 1987, titled, "Embattled Giant Of Psychology Speaks His Mind," his view is stated.

“The use of punishment is another issue Dr. Skinner still feels impassioned about. He is an ardent opponent of the use of punishment, such as spanking, or using ''aversives'' -such as pinches and shocks - with autistic children. ''What's wrong with punishments is that they work immediately, but give no long-term results,'' Dr. Skinner said. ''The responses to punishment are either the urge to escape, to counterattack or a stubborn apathy. These are the bad effects you get in prisons or schools, or wherever punishments are used.'' The complete article can be viewed here:

http://query.nytimes.com/gst/fullpage.html?res=9B0DE3D6143CF936A1575BC0A961948260&sec=health&spon=&pagewanted=print

The 1965 experimental research of O. Ivar Lovaas, Benson Schaeffer, and James Q. Simmons, conducted at the University of California, Los Angeles, concluded that electric shock applications did not have enduring effectiveness. In conclusion, they questioned the need for shocking children with Autism by stating, “A basic question, then, is whether it is necessary to employ shock in accomplishing such an end or whether less drastic methods might suffice.” (Journal Of Experimental Research in Personality 1, 99-109 (1965))

A recent Mother Jones article about this institution began like this, “Rob Santana awoke terrified. He'd had that dream again, the one where silver wires ran under his shirt and into his pants, connecting to electrodes attached to his limbs and torso. Adults armed with surveillance cameras and remote-control activators watched his every move. One press of a button, and there was no telling where the shock would hit—his arm or leg or, worse, his stomach. All Rob knew was that the pain would be intense.”(Mother Jones, August 20, 2007). A horror from the Abu Ghraib prison scandal? No, torture carried out in the name of treatment, right here in the State of Massachusetts, against the most vulnerable of our young people -- and designed and implemented by Psychologists.

It is additionally noted that programs that are built around scientific knowledge and principles will generally welcome peer review and a continual improvement process. Currently and historically, JRC practices are remarkably deficient in these areas. As leaders in the field of psychology, and as professionals who are intolerant of torture, APA has an opportunity, if not an obligation, to demonstrate leadership in this matter. Please consider the following facts and arguments.

Section 1 of the American Psychological Association Code of Ethics, creates a standard of excellence in regards to the personal accountability of psychologists to their Code of Ethics. It also establishes a means for resolving professional ethical issues between psychologists and with organizations with which Psychologists may be affiliated.

Sub-Section 1.05 of the Code of Ethics covers the topic of Reporting Ethical Violations. This sub-section related to reporting, places a grave responsibility upon APA members to report apparent ethical violations that have "substantially harmed or are likely to substantially harm a person or organization." This reporting "may include referral to state or national committees on professional ethics, to state licensing boards, or to the appropriate institutional authorities."

Within the 2007 Reaffirmation, reference is made to the 2006 Resolution, stating emphatically that it is "a comprehensive and foundational position applicable to all individuals, in all settings and in all contexts without exception." We are in agreement with this position.

We are pleading with APA psychologists, and all psychologists who independently and voluntarily follow the APA Code of Ethics, to consider that the 2006 Resolution is inclusive of all human beings. We ask that it be applied toward those who are receiving treatment/services related to symptoms associated with autism, developmental differences, and mental health challenges, including such that may cause or contribute to self-injurious behavior. This letter is an earnest appeal to APA leadership and all professionals in the field of psychology to demonstrate ethical practices and adhere to the principles of the 2006 Resolution and the 2007 Reaffirmation in opposing the use of skin-shock and food deprivation that are currently being administered as "treatment" for self-injurious behavior, aggressive behavior, and other behaviors that are being considered as precursors. Skin-shock or food deprivation under any other context, or being administered to any other population segment would be considered an inhumane form of punishment that in reality is truly torture. According to the 2006 Resolution, there can be no exception for this type of degrading treatment.

Although there are some within this mental health population segment who are able to communicate how they have been "substantially harmed by a person or organization," there are many others who are unable to do so. Even those young people with the ability to communicate how they are being harmed are virtually unheard. Regardless of the individual’s ability to communicate and describe torture and its physical, mental and emotional effect upon them, this type of "treatment," is still inherently wrong. Is it not the responsibility of a professional or any human being to take action when they personally are aware of acts that are inhumane and degrading forms of torture?

At the JRC this "treatment" is being authorized under court order. While Judges may have extensive expertise within the framework of law, they are reliant upon the testimony of experts (in these cases, Psychologists) to assist them in making decisions. Experts within the field of psychology need to see an example of leadership from organizations such as APA. Good leadership provides guidance and constraints in all areas that are conducive to professionalism and best practices.

In conclusion, we are respectfully appealing to APA members and leadership on the basis of professionalism and unprejudiced application of your own code of ethics, and consistent with your 2006 Resolution and 2007 Reaffirmation, to formally and specifically declare your position regarding the use of skin-shock "treatments," food deprivation, and any other aversives that inflict pain or deprive basic human rights at JRC or elsewhere. We are calling upon APA members to apply the Code which condemns the treatment that is currently taking place at JRC.

We respectfully request that the APA send this letter to its members, post it on their website and/or publish it in a newsletter or other publication that reaches its full membership. We request that the APA as a professional organization, and as professional individuals actively and vociferously advocate for best practices while opposing that which is torture. We furthermore request that the APA, as an organization, make a formal and specific declaration of its stance in this matter and exercise appropriate discipline, thereby demonstrating that the Code of Ethics will be applied without prejudice. Your example in this will be a voice of hope for those who have been locked away, subjected to daily torture and unseen and unheard for too long.


Written and Presented by:

Derrick Jeffries

Person with Asperger’s Syndrome

Nancy Weiss

Co-Director, The National Leadership Consortium on Developmental Disabilities, Center for

Disabilities Studies, University of Delaware

The following individuals and organizations endorse this message:

To be added to this list, please submit your name and/or the name of your organization to Derrick_Jeffries@Bestmail.us . Individual submittals should include an identifying title, such as parent, person with autism, Ph.D., concerned citizen, etc. For organizations, information must be submitted by an officer of the organization. Posting this letter on websites is encouraged; however, we do ask that you send us an e-mail address where updated copies can be received. It is our intent to update this section of the letter on a monthly basis for a reasonable length of time. Updated copies will also be sent to the APA.

For those interested in contacting APA directly, please consider sending mail or e-mail to:

Lynn F. Bufka, Ph.D.
Assistant Executive Director, Practice Research and Policy
American Psychological Association
750 First St., NE
Washington, DC 20002

E-mail: LBufka@apa.org

Desperation

I am so scared and worried today. My friend in Germany is back in her coma and the doctors aren't very positive about the outcome now. And her boyfriend, who I have become very close to is giving up - not on her - but himself. He has dropped out of school. He is talking to counselors about giving up his daughter for adoption. And he talking about fixing all his problems for good. He hasn't said the word suicide yet, but I hear it none-the-less.

He isn't disabled, but his baby's mother is. He is so desperately in need of help. He is 22 and alone in making life and death decisions about his girlfriend. He isn't handling it well. Right now the only things that keeps his girlfriend alive are his decisions to keep providing the machines that keep her alive, and the medication and his holding her hand that keeps her lucid when she awakes. Without him, she will die. Because of her, he may choose to die. A little girl may lose both her parents because we don't offer enough support to people who are in desperate need of support.

I feel so helpless. There is nothing I can do but wait for the next email and hope I have something helpful to say.

Prego!

My friend is out of the coma ever so slightly. She has come out of it and gone back in. She has refused medication she was getting while in her coma and then become paranoid and hysterical. When they calmed her down she went back into the coma. They have turned off all the machines that have been keeping her alive. I never thought I would be for doing this, but I am. The doctors said it was time to find out whether she wanted to fight to live or not. It's not clear yet what is going to happen. She seems to be living in limbo. Sometimes I wish one thing would happen and others times I wish the other. I wish she could be who she was before, but since I don't think she will, maybe it is best if....oh I can't even write the words.

In the meantime her daughter has spoken her first word. I am so excited. Her first word was prego - which is please in Italian. Her dad is Italian. I think it is such a wonderful first word. My first word was cookie. Prego is such a polite word - a sign of good breeding - a sign that she has a father who truly respects her as a person. Please let her have the wonderful life she deserves!

New family members

In our house live Teddy and me. Teddy lives downstairs in his own apartment. Opal and Jack also live with us. They are 2 rabbits. They were supposed to live with Teddy, but I wasn't sure they were being kept clean- so they live upstairs with me.

Opal and Jack are supposed to be siblings. We got them from a rabbit rescue. Don't trust a rabbit rescue to know what they are talking about. Our twins were the same size when we brought them home. But Jack started to grow and grow and is now about 3 times the size as Opal. It turns out they are the same breed - just one is full-size and the other is dwarf.

Well now we have two more family members: 2 ringneck doves. I'm not sure their names might not change - but they are Irma and Flora at the moment. Named after my grandma and her sister. My son adored them both and think that the doves are from heaven.

So the doves are exploring the house and we are trying to figure out where in the house they will live- what they eat - etc. We are also wondering what the rabbits think of them and if they might turn out to be friends.

Update: they have been with us for less than 18 hours and we have eggs. I can only assume the eggs were made before they came to live with us and these are truly 2 girls.....but just like rabbit rescues can be wrong - so can dove owners.

Update: They are ignoring the egg. There is only 1 now.
Opal, our rabbit has died. Old age maybe. Shock from seeing the birds? Teddy is heartbroken. Jack seems sad. We introduced Irma to Jack. They didn't seem to mind each other. But Jack couldn't get in his cage fast enough when the introductions were complete.