From my inbox today. Anyone who can help, please contact Nancy directly.
Dear friends,
I am forwarding the following message on behalf of Nancy Weiss from the National Leadership Consortium on Developmental Disabilities. Nancy and I have collaborated on prior advocacy efforts, and I have a great deal of respect for her and her work. I am sending you this because this request for information and assistance is of tremendous importance for people with special abilities and challenges and for their families and loved ones.
Even if you do not have specific knowledge related to JRC issues, please read the paragraph I have underlined. If you successfully use non-aversive and non-restraining treatments / methods / models with “people who have severely dangerous behaviors,” or know of organizations or individuals who do, please contact Nancy or myself. I will personally add my preference that these organizations or individuals should not be reliant upon the use of psychiatric medications that are essentially chemical restraints.
Thank you,
-Derrick Jeffries
The following is from Nancy Weiss:
As many of you know both the US Department of Justice and ‘The Office of the United Nations High Commissioner for Human Rights, Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment’ are in the process of conducting investigations into the Judge Rotenberg Center (formerly the Behavior Research Institute). I can provide more information on these efforts if any of you have not seen the recent advocacy efforts that led to these investigations.
I am writing to you as experts in positive behavioral supports and as progressive people within the field who may be able to provide information to these investigations. Both investigating bodies (the DOJ and UN) are interested in seeing alternatives to the use of aversives/restraints with people who have severely dangerous behaviors. If you serve people who meet this definition and would be willing to talk with investigators or have investigators visit, please let me know.
Additionally, both the DOJ and UN are interested in following up on anyone who had been at JRC/BRI and is now being served elsewhere and without the use of painful and restrictive methods.
If you are serving someone who was previously at JRC/BRI the investigators are interested in learning more. If you know anyone else who is serving someone who was previously at this facility, please feel free to forward this request to them or to any appropriate lists on which you participate.
Names of past JRC residents do not need to be provided, however if the person or family members have interest in meeting with DOJ or UN investigators, there would be considerable interest in this as well.
The investigators would like to know the following to the extent it is known:
- How long was the person at JRC/BRI, for what years, and how old was the person when he/she went there?
- What is (was) the nature of the person’s disability or issue for which they went to JRC/BRI?
- What state was the person from when he/she went there and, if known, what state agency, if any, was involved in the placement?
- What aversive or other restrictive procedures were used on the person at JRC/BRI?
- When did the person moved out and to what type of setting/situation?
- Was this move approved/recommended/supported by JRC/BRI?
- Most importantly, how is the person is doing now:
- Are any restrictive procedures still used?
- Has the person’s life improved and how?
- Have there been any long lasting effects of having been at JRC/BRI?
- Are the person, family members or agency staff willing to be interviewed by the DOJ or UN investigators (all information will of course be confidential)
Please contact me if you have information to share or would like more information about these efforts.
Feel free to forward this email.
Thank you ~
– Nancy Weiss
Nancy R. Weiss
National Leadership Consortium
On Developmental Disabilities
University of Delaware
Department of Human Development and Family Studies
Alison Hall West
Newark, DE 19716
Home Office: 410-323-6646
www.nlcdd.org
June 30th, 2010
Posted by
Mike |
Judge Rotenberg Center, abuse, autism advocacy |
one comment
“Political autism” has emerged again in a row within the European Union (EU). Despite taking Britain into the EEC (the forerunner of the EU) in 1973, the Conservatives have always been vulnerable to disputes between their pro-European wing and the euro-sceptics who are mistrustful of European federalism and keen to defend British independence. The Labour Party has comparable factions within its ranks.
Thus political leaders of both the main parties have always had to perform a tricky manoeuvre, demonstrating their European credentials to a business community that knows where its markets lie and appealing to an electorate, many of whom prefer to blame faceless European bureaucrats for all our ills. This has led to an inconsistent approach that causes exasperation amongst some of our European partners.
This came to a head again this week over the lack of commitment by the Conservative Party leadership to the European Union. According to the Guardian
Pierre Lellouche, France’s Europe minister, described as “pathetic” the Tories’ EU plans announced today, warning they would not succeed “for a minute”.
Giving vent to frustration across the EU, which has so far only been expressed in private, Lellouche – who said he was reflecting Nicolas Sarkozy’s “sadness and regret” – accused William Hague, the shadow foreign secretary, of a “bizarre autism” in their discussions.
He said: “They have one line and they just repeat one line. It is a very bizarre sense of autism.”
This is not the first time autism has been used as a term of abuse in politics. But the National Autistic Society launched an immediate complaint
Autism (including Asperger syndrome) is a serious, lifelong and disabling condition. Comments such as those attributed to Pierre Lellouche, France’s Europe Minister, in which he seemingly suggests the Conservative Party, and in particular, William Hague, demonstrate a bizarre sense of autism are therefore extremely unhelpful.
To use the terms ‘autism’ and ‘autistic’ in a derogatory or flippant manner can cause deep distress and hurt to people affected by the condition. The National Autistic Society (NAS) is keen to address this issue, in order that these terms are not used lightly, particularly by commentators or people in positions of power or influence.
Autism is much more common than most people think and affects over half a million people in the UK. To use the terms as a criticism, for dramatic effect or to try and gain political advantage only perpetuates the confusion and misunderstanding which people with autism have to cope with everyday. This is simply unacceptable and must stop.
Today’s Times ran with the story of Monsieur Lellouche’s apology.
France’s Europe Minister has expressed his deep regret at causing offence by calling the Conservative Party “autistic”, but also blamed a mis-translation for the furore today.
Pierre Lellouche said that he was voicing his real concern about the Tories’ Eurosceptic slide under David Cameron when he reproached the party for “a very bizarre sense of autism” in an interview with The Guardian.
He also called their hostility to the European Union “pathetic” and said that the party’s policies in the European Parliament had “castrated” them. Aside from the political row, the remarks were condemned by autism advocacy groups.
However, although the minister said today his remarks were “clumsy”, he claimed that the term, which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.
Leaving politics aside, this derogatory use of autism reflects some very primitive and harmful ideas that still hold sway in France. Two years ago I wrote about an abusive “treatment” known as “packing” that is still going on today
“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.
The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”
This cruel treatment has been condemned by advocates for neurodiversity and proponents of biomedical cures alike. I have made my feelings regarding Lorene Amet’s position on vaccines and biomedical treatments perfectly clear hereand, more recently, here. But I agree with her that Packing is barbaric.
It is time that the French medical and educational systems came to grips with the reality of today’s autism. Placing autistic children in hospitals, under psychiatric surveillance, refusing their inclusion in proper educational systems, refusing their access to medical examination
and treatments, violating their human rights and dignity, and even worse still allowing interventions such as “packing” to be conducted in hospital settings is unhelpful and has to be stopped.
According to the Times French autism organizations have welcomed the NAS response and are equally condemnatory of the casual use of autism as a term of political abuse in France.
French autism groups said that the affair demonstrated how offensive was the current use of the term in French public discourse.
Patrick Sadoun, a member of the Sesame Autism Association, said: “The English are right to be shocked. I congratulate a country that reacts to this. I am horrified that French politicians, at the slightest occasion, call one another autistic.”
While autism is an acceptable term of abuse autistic people continue to be the victims of unacceptable physical and psychological abuse.
This post is also available on LBRB
November 5th, 2009
Posted by
Mike |
National Autistic Society, abuse, politics |
13 comments
Anyone with a reasonable scientific education can easily spot the flaws in the manifold claims of quackery. But for those who lack a reasonable scientific education, ie most of us, the sciency gloss that many quacks use to cloak their claims with credibility can be very persuasive.
This is especially the case with tests for metal poisoning. The quack doctors give a chelating agent to a patient and then take a urine sample and analyse it. These tests usually reveal levels of metals that are above the reference levels based on large scale population studies that are regarded as normal.
But now the American College of Medical Toxicology has issued an authoritative statement condemning the practise and pointing out the dangers.
Although the ACMT does not go as far as to call this practise fraudulent, it does state its
disapproval of the use of post-challenge urinary metal testing in clinical practice and the use of such test results as an indication for further administration of chelating agents.
People with safe levels of metals will demonstrate excess levels after such a provoked test. The quacks claim that the body sequesters metals in internal organs and the provocation is necessary to reveal the true level of metals in the body. This ignores the fact that the body is taking in, sequestering and excreting toxins continually. The provoked test is equivalent to wringing out a damp cloth that was quite happily drying out and pointing to the puddle as proof that the cloth was actually soaking wet.
Then there are the health risks. Stirring up all those metals and releasing them from sites in the body where they are doing no harm may increase the risks of toxicity. And the quacks do not stop at one test. They chelate and test, chelate and test over and over. Chelation does not just target toxic elements. Essential minerals like copper, iron and zinc are also excreted in quantities that may be dangerous to health. In the case of Tariq Nadama the “wrong” chelator, disodium edetate, removed so much calcium from his system that he died. The “right” chelator (calcium disodium edetate) would have still taken out essential minerals like copper, iron and zinc. Previous treatments of this unfortunate child for alleged aluminium toxicity had already depleted his iron levels.
Those parents who avoid intravenous chelators like edetate in favour of “safe” oral chelators like DMSA and DPMS should be aware that they can redistribute metals like mercury to sites within the body where they can do harm. The ACMT also points out that
There is published experimental evidence that deleterious effects may occur when chelation is applied in the absence of prior lead exposure.
They conclude
It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.
They make no mention of autism but their message is plain. There is no scientific basis for using provocation or challenge testing to diagnose metal poisoning. Therefore all the evidence from this type of testing that is used to support claims of metal poisoning in autistic children is worthless. And the repeated treatment of children with chelation agents for this non-existent poisoning has no benefits but carries risk of harm.
So when will the practitioners who carry out this abuse of children be told to stop or risk prosecution?
August 14th, 2009
Posted by
Mike |
Quackery, Uncategorized, abuse, chelation |
one comment
Thanks to Bev for alerting me to this story about the emotional abuse of a 5 year old by his kindergarten teacher, Wendy Portillo. Portillo thought it would be a good idea to stand young Alex Barton, who has Asperger’s Syndrome, in front of the class and invite other pupils to say what they did not like about him. Then she conducted a vote on whether he should remain in the class. The pupils voted 14 to 2 to exclude him. He spent the rest of the day in the nurse’s office and has not returned to the school. He screams whenever he accompanies his mother to drop off his sibling at the school. The police have investigated and the district attorney has decided not to prosecute. The school district is still investigating the matter.
Bullying of children with disabilities is commonplace. But I was shocked to read that a teacher was leading the bullying when I read Amanda’s blog about Alex, which suggested that bullying by adults or the sanctioning of bullying by adults who should be defending vulnerable children is a regular occurrence. Amanda also provides a valuable perspective on a culture that not only rewards the “winners” but also sets out to deliberately punish the “losers” as well.
Statements by public figures suggest that we aspire to an inclusive society that embraces diversity. The reality is somewhat different. Amanda asks a very pertinent question.
I also want to know what on earth it means that it’s considered “good social skills” to learn to be one of the people that excludes. And autistic and non-autistic people alike can eventually learn to be that, even if we weren’t much like that to begin with. I’m not trying to say we can’t, I’m not going to pretend not to notice what happens to autistic people who gain the power to become exclusive. But it’s sheer ugliness that these horrible things are treated as normal, and being the target of them makes you seen as somehow worse than the people doing the targeting. And the people doing the targeting are seen as the ones to emulate, it seems like.
I think we owe it to Alex to let the school authorities in Port St Lucie know that this teacher’s behaviour is beyond the pale. There is another way. I am emailing this story, originally posted by Fargo on alt.support.autism to the school principal, Maria Cully with copies to Wendy Portillo and the St Lucie County School Board.
SOMETHING SPECIAL ABOUT BENJI
Once upon a time there was a Benji. He looked like a little boy. He had
brown hair and big brown eyes and a very sweet smile. But Benji wasn’t like
other little boys. Sometimes Benji was very quiet and the other children at school didn’t
think that Benji knew how to play.Sometimes Benji was very noisy and the other children didn’t think that
Benji knew how to be serious.
And sometimes…sometimes Benji was very angry.
There was something very different about Benji.
But all the time, inside, Benji wanted to be like the other children.
He liked to watch them run on the playground. Sometimes they told him not
to stare.
He liked to watch them go down the slide but he didn’t like to go down the
slide himself and they thought he was a sissy.
He liked to play characters in movies and sometimes the kids said he was a
crazy guy.
Yes, there was something very different about Benji.
Then one day, the teacher told the classroom what it was that was different.
Benji was Autistic.
Benji could hear and could see and could feel things. But sometimes he
didn’t know what was said. Sometimes he didn’t know what to do. Sometimes
there were things he didn’t like to touch or to taste.
The teacher explained that while Benji was just like all the other kids on
the inside, sometimes things he heard or saw or touched or tasted got
confused before they reached his brain.
And this could make him very angry because, Benji was waiting and wanting to
be friends.
She told the children that each of them was different from the rest of the
class, just like Benji.
Mary was the tallest girl and Angie was the shortest.
Billy had the most freckles, and Charlie had the longest hair.
She told the class that being different wasn’t a bad thing because being
tall or short or having freckles or having long hair wasn’t a bad thing.
Sometimes it was very special.
She continued to go around the classroom telling each child something
special about them.
Toby told the funniest jokes and Max was the best speller.
Tammy could run the fastest and Richard drew the best airplanes.
Each child was different yet each child was special.
The teacher asked the children to try to help Benji learn how to do the
things the other kids knew how to do. And she asked for them to each find
out the answer to this question.
How is Benji special?
The kids decided to try to help Benji.
When Benji was quiet they would talk to him by saying “It is a nice day”
instead of asking him what kind of day it was.
When he was loud they would say, “Benji, we have to be quiet now. We will
be loud at recess.”
When he watched them run on the playground they would go over to Benji and
say, “Benji, will you run with me?”
And when he was afraid to go down the slide, they did not call him sissy.
They told him things they were afraid to do.
They played like they were characters in movies, too, and Benji joined in on
their games.
But most of all, they stopped calling Benji a crazy guy. Because once they
got to know him…they found out what was special about Benji.
Benji was “Cool.”
Alex is cool as well. I hope someone can tell him that.
May 24th, 2008
Posted by
Mike |
Autism, abuse, bullying, education |
18 comments
