Announcements
Letters to FDA needed – End Electric Shock at Judge Rotenberg!
NEW! Gemino Health Care has pledged $7 million to finance the Judge Rotenberg Center. This will allow them to continue torturing their students with disabilities.
Sample of a letter to the FDA asking them to disallow use of electric shock devices at JRC
Letter from a former student at JRC on her experiences there
Call to Action: Tell FDA to End Use of Electro Shock Devices at JRC!
The following text comes from Nancy Weiss, Director of the National Leadership Consortium on Developmental Disabilities. She gave me permission to share this text via Facebook and blog. Please take action in writing letters to the FDA, and then share with others in your network. Nancy invites people to cc your emails to her (nancy-weiss@comcast.net) so she and other lead advocates on this issue can keep track of correspondence being sent to the FDA.
The effort to have the FDA disallow the use of electric shock devices at the Judge Rotenberg Center is in jeopardy. We are at a turning point — we need you to write a letter and to pass this request on to others who are concerned about this issue.
It seems the FDA has gotten dozens of letters from parents whose sons or daughters are at the Judge Rotenberg Center and who want JRC to be able to continue to use painful electric shock to control behavior. The FDA is being swayed by these letters. Those who sent letters are not bad parents – but they are people who have found few other options for their loved ones, have made the difficult decision to send their family member to a place like JRC and who need to feel (and convince others) that they have done the right thing. It is clear from many JRC parents that they had no idea about some of the devastating things that were happening to their loved ones at JRC until much later. A letter from a former student is attached.
We need people to write letters to the FDA. A template for a letter is attached; feel free to use it or to use parts of it – but the strongest letters will be those written from the heart. Letters can be signed by individuals or organizations.
LETTERS FROM ANYONE WHO CARES ABOUT THIS ISSUE ARE GREAT; LETTERS ARE NEEDED ESPECIALLY:
– From parents or family members who have loved ones whose behaviors are just as severe as those of people at JRC but whose family member has been treated/supported successfully with humane approaches. If you have a family member whose behaviors are very challenging, please write!
If you know someone who has a family member who could have ended up at a place like JRC and who may be willing to write a letter to protect people with disabilities from the unspeakable approaches used at JRC, please forward this request.
– From organizations that serve people whose behaviors are just as severe as those of people sent to JRC – or even people who have been at JRC. Do you support people with tough behaviors using positive approaches? Please write about the kinds of people you support and the effectiveness of your approaches. Let the FDA know that pain should not be a part of an effective behavioral approach. Please forward this request if you know people from other agencies that serve people with challenging behaviors.
There are currently about 240 children and adults at JRC …. they represent only a fraction of the many, many people across the country who have challenging behaviors. We need the FDA to understand that it is neither acceptable nor necessary to use pain to control behavior.
Thanks to the many of your organizations that signed on to the letter to the FDA spearheaded by the Autistic Self Advocacy Network. The full letter with final sign-ons is here: http://autisticadvocacy.org/2013/02/letter-to-food-and-drug-administration-on-the-judge-rotenberg-center/
Now, individual and organization-specific letters are badly needed. Letters can be emailed to Margaret Hamburg, M.D., the Commissioner of the FDA at:
You may also want to mail a copy. Letters should be sent by the end of next week (February 22nd).
Please send your letter directly to:
Margaret Hamburg, M.D.
Commissioner
US Food and Drug Administration
10903 New Hampshire Avenue Silver Spring, MD 20993
You are welcome to copy Nancy Weiss (nancy-weiss@comcast.net) so she and fellow lead advocates can maintain a file of the letters sent to the FDA.
Thank you for your continued concern about this issue. The letter from the former student (attached) has touched people’s souls and galvanized this effort in ways that are unprecedented. Please help to end these atrocities once and for all.
– Nancy Weiss
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Letter from a former student at JRC about her experiences there
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Sample Letter to FDA
What follows below is a sample letter to the FDA on the issue of the use of electric shock at Judge Rotenberg for you to crib from in composing your own letter/email. (The letter from a former student of Judge Rotenberg follows further below.)
February 13, 2013
Margaret Hamburg, M.D.
Commissioner
US Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring MD 20993
Re: Graduated Electronic Decelerators (GED) 3A and 4 used to administer electric shocks at the Judge Rotenberg Center (JRC); FDA Warning Letter #367480
(Dated 12/6/12)
Dear Commissioner Hamburg:
We are writing to express our appreciation for the FDA’s action in issuing the warning letter above, regarding the use of dangerous, adulterated devices, known as the GED-3A and GED-4. We also urge your agency to move swiftly to prohibit, and if necessary, seize these unsafe and ineffective devices which are neither cleared nor approved by the FDA.
The GED-3A and GED-4 are used to administer electric shocks on children and adults with disabilities under the behavior modification regimen of the Judge Rotenberg Center (JRC) in Canton, Massachusetts. Aversives – the use of pain as a means of behavior modification – are an inherently unsafe, antiquated and unsupported type of treatment for individuals with developmental disabilities or other persons with behavioral challenges.
Safety.
According to documents referenced on the JRC’s own website, the GED administers a skin shock, via electrodes attached to the skin with a maximum current of 45.0 milliamperes RMS, with an average peak of 91 milliamperes and a maximum duration of 2 seconds. JRC residents may wear from one to five GED sets at once (each on consisting of a battery, shock generator and associated electrode). The GED administers a substantially greater shock than either a cattle prod or a dog collar.
Shocks administered by the GED-4 are extremely painful and have burned the skin and subjected JRC residents to emotional trauma and risk of further physical harm.[1] Moreover, with electric shocks are administered by low wage direct support staff, JRC residents are subjected to misfirings and misuse of the GED. For example, for a news video about a prank phone call which resulted in 29 shocks to one student and 77 shocks to another, with first degree burns resulting, see http://www.youtube.com/watch?v=-aUIhWmDPeI. To watch a video released in court in 2012 of a teenager with autism being shocked with the GED-1, seehttp://www.youtube.com/watch?v=ssc8mUqUEqE.
As one former JRC resident wrote in a letter to the FDA:
The GED IS harmful. Even the GED-1. I was burned many times, and I still have scars on my stomach from being repeatedly shocked there, by the FDA approved GED-1. The electrodes had actually burned into my skin. I experienced long term loss of sensation and numbness in my lower left leg, after getting a shock there. I felt searing pain all the way down to the bottom of my foot, and was left with no feeling in my skin from the knee down for about a year. Again, this was with the GED-1. After complaining to JRC nursing about my leg, they told me to tell the Neurologist about it during a follow up visit for a suspected seizure. He asked the staff what that device was on my leg, and they explained to him it was an electrode. After their explanation, the Neurologist said, “Well, I don’t know what that thing is, but it needs to come off.” JRC left the device off my leg for about a year, then decided on their own, without sending me back to a Neurologist, it was ok to put it back. I have seen students with torso electrodes accidentally placed on their spine area, get a shock there and be violently bent backwards.
Also, I would like you to know that the devices have a tendency to malfunction and go off all by themselves. JRC refers to this as a “misapplication”. It happened to me and other students so many times I cannot count. Sometimes the GED’s will just start to go off and shock you by themselves. Other times the staff shock one student but the remote can also set off someone else’s device at the same time. I have also gotten accidentally shocked from staff mixing up my device with another student’s device, shocking me instead. Then there are the times when staff intentionally misuse the GED. I have had a staff who became angry with me and started pushing more than one remote at a time, shocking me several places on my body at once. I have had staff intentionally give me shocks for things I didn’t do in places like the bus where there was no camera to prove it. I have had numerous staff over my years there threaten me with a GED, antagonize me to try and get me to have a behavior they can then shock me for, merely for the sport of it. Staff can and DO use the GED to scare non-verbal students into doing what they want them to by pretending they are about to shock them. Some even laugh when they do this.
…
Besides the physical pain, life with GED’s is a life of constant anxiety. I experienced heart palpitations daily, had a very hard time sleeping and eating, and became rather paranoid, always wondering if I was about to get shocked and constantly alert in all directions. I eventually became very depressed there and contemplated suicide every night. Now, after having been gone almost 4 years, I am still having nightmares and flashbacks during the day, especially when I hear certain noises that remind me of GED’s and JRC.
Effectiveness:
There is an overwhelming amount of clinical literature and lived experience to demonstrate that skin shock is not only dangerous, unsafe, cruel and inhumane, but it is also ineffective. Nationwide, the entire field has shifted markedly away from aversives towards other methods of treating serious behavioral challenges, including positive behavioral supports. JRC is the only school remaining of its type clinging to this antiquated approach, and children and adults with comparable behavioral challenges have had great success, across the country, in other types of programs, either in lieu receiving aversives at JRC, or after leaving that facility.
Legal Status of the GED 3A and GED 4:
As explained in your December 6, 2012 warning letter to the Judge Rotenberg Center, the most recent versions of the GED, the GED-3A and the GED-4 are adulterated devices which have received neither the approval nor clearance from the FDA. In 1994, the FDA did clear the
GED-1 as being substantially equivalent to a predicate device, the SIBIS. However, thereafter, JRC substantially increased the strength of the GED, creating the new versions GED -3A and GED-4. Not only did JRC begin using these devices without seeking FDA clearance, but they also publicly misrepresented that these devices had FDA approval. See May 18, 2012 Anderson Cooper videohttp://www.youtube.com/watch?v=egZP2SK3R5Q showing (at 1:18) JRC website misrepresentation that the device was FDA approved, and explaining (at 1:53) that the FDA notified JRC in 2010 that the GED-3A and GED-4 were not cleared, with JRC continuing to use these devices nonetheless.
Requested Action:
We ask the FDA take the following action:
• Seize these unsafe devices which are neither approved nor cleared;
• Deny any request for clearance, should a 501(k) premarket notification submission be given to the FDA for the GED-3A and GED-4;
• Deny any request for premarket approval for the GED-3A and GED-4, should such request be submitted;
• Revoke its 1994 decision to clear the GED-1, given the overwhelming evidence that this device is unsafe and ineffective, and the significant differences in the strength of this device and its predicate, the SIBIS.
Thank you for your consideration of our request.
Sincerely,
[1] As one former JRC Teacher’s Assistant wrote in a letter to the FDA, “I can testify to seeing bloody and crusty scabs all over student arms, legs, and torso, on numerous students, caused mostly by the GED-4, which was most evident when helping certain nonverbal students to sponge-bathe at school, called ‘self-care’.”
Sample of a letter to the FDA asking them to end use of electro shock devices at JRC
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Letter from Former Resident at Judge Rotenberg Center
The following letter was written by a former student at the Judge Rotenberg Center about her experiences with electroshock “treatment”.
The following letter was sent to Nancy Weiss, Director of the National Leadership Consortium on Developmental Disabilities at the University of Delaware on January 11, 2013. Ms. Weiss assured the author that she would protect the writer’s anonymity. Ms. Weiss can pass messages to the author. Ms Weiss can be contacted as below:
Home Office: 443-318-4879
Cell: 410-241-7257
email: nancy-weiss@comcast.net
Dear Ms. Weiss
Hello my name is xxx. I was told you are someone I can talk to in confidence and be safe. I would like to share with you my letter that I wrote to the FDA about life inside JRC and on the GEDs. It was torture being there. And I suffered so much. I am still tormented. Here is my letter of testimony:
My name is xxx and I attended the Judge Rotenberg Center. I am writing to ask you to please reconsider your approval of the GED for use on ANY human being. I was placed on the GED about 2 months after arriving. I started out on the GED-1, and during my last few years I was placed on the GED-4. There are so many of us that were tortured with these devices, this “treatment”. I believe the reason why more ex-students haven’t spoken out is because they are either non-verbal, afraid, or believe that no one cares about us or it will not make a difference. Parents and families that speak and rally in favor of the GED, are not the ones who have to experience it, the pain and anxiety, day after day for years on end.
The GED IS harmful. Even the GED-1. I was burned many times, and I still have scars on my stomach from being repeatedly shocked there, by the FDA approved GED-1. The electrodes had actually burned into my skin. I experienced long term loss of sensation and numbness in my lower left leg, after getting a shock there. I felt searing pain all the way down to the bottom of my foot, and was left with no feeling in my skin from the knee down for about a year. Again, this was with the GED-1. After complaining to JRC nursing about my leg, they told me to tell the Neurologist about it during a follow up visit for a suspected seizure. He asked the staff what that device was on my leg, and they explained to him it was an electrode. After their explanation, the Neurologist said, “Well, I don’t know what that thing is, but it needs to come off.” JRC left the device off my leg for about a year, then decided on their own, without sending me back to a Neurologist, it was ok to put it back. I have seen students with torso electrodes accidentally placed on their spine area, get a shock there and be violently bent backwards.
Also, I would like you to know that the devices have a tendency to malfunction and go off all by themselves. JRC refers to this as a “misapplication”. It happened to me and other students so many times I cannot count. Sometimes the GED’s will just start to go off and shock you by themselves. Other times the staff shock one student but the remote can also set off someone else’s device at the same time. I have also gotten accidentally shocked from staff mixing up my device with another student’s device, shocking me instead. Then there are the times when staff intentionally misuse the GED. I have had a staff who became angry with me and started pushing more than one remote at a time, shocking me several places on my body at once. I have had staff intentionally give me shocks for things I didn’t do in places like the bus where there was no camera to prove it. I have had numerous staff over my years there threaten me with a GED, antagonize me to try and get me to have a behavior they can then shock me for, merely for the sport of it. Staff can and DO use the GED to scare non-verbal students into doing what they want them to by pretending they are about to shock them. Some even laugh when they do this.
Many of the things I and others get shocked for at JRC were very small things. They would often shock us for things simply because staff found them annoying and they would keep writing therapy notes until our psychologist added it to our program. I got shocked for tic like body movements, for which I have no control over, and which don’t hurt me or anybody else. I would be shocked for waving my hand in front of my face for more than 5 seconds, for closing my ears with my fingers, which I do when things get too loud, because I cannot tolerate too much noise. I would be shocked for wrapping my foot around the leg of my chair, for tensing up my body or my fingers, and the list goes on and on. There was a period of time where I and many of the other students were getting shocked for having 5 verbal behaviors in an hour. A verbal behavior is a minor behavior like talking to yourself, noises (such as clearing your throat), or talking without permission. Every hour would start a new block. And if you were pinpointed more than 4 times in that hour, on the 5th you would get a shock, and then for EVERY minor verbal behavior after that you would be shocked. If you talked out a 6th time, shock. If you had to go to the bathroom, and you had to go really bad, but you asked more then once, that would be nagging, which is a verbal behavior. And these were the things we were getting shocked for. My program was this way for a while. Some of my verbal behaviors I got pinpointed for were crying, talking to myself (even quietly), noises, laughing, humming, repeating myself and inappropriate tone of voice (which was based on staff’s opinion of how my voice should sound). Almost every time I spoke or answered a question, I was pinpointed with these behaviors. My reaction was to stop speaking, but they also made part of my program that if I didn’t answer staff in 5 seconds, I would automatically be shocked. I was paralyzed with fear every day. No matter what I did I was doomed. I ask those who read my letter to think to themselves about how often they do some of these things while they are working. Twirl their pens, talk to yourself or think out loud, ask a question to someone nearby, hum a song that’s in your head, laugh at something funny in the room. These are things humans do. And they are not harmful. Yet we were being subjected to terrible pain and fear for doing these simple things. One day, out of the blue, the case managers went through the building and scratched off this punishment from all their students recording sheets. They didn’t say anything to us about it, just made it like it never happened. Although I can’t say for sure, I overheard talk that one of the male students had told his lawyer and family they were shocking him for talking, and that JRC was never supposed to be allowed to do that to us. Whatever the reason, they covered it up fast. And even though they stopped, they still need to be held accountable for all of it. Because it went on for a very long time, and I suffered greatly because of it. People NEED to know these things happened.
There was a time when I was there that I was on the portion program. This is where JRC starves you as a punishment for having a behavior. For example, my first plan was that for every time I had a minor behavior, such as talking to myself, rocking, wiggling my fingers, I would lose a part of my next meal. My meals came to the classroom cut into tiny pieces and divided into portions inside of a little plastic cup. Every time I had one of these little behaviors, I was forced to stand up and throw one cup away. There were many days I would lose most of my meals. And the hungrier I got, the more frantic and restless my body became. This caused me to have more behaviors like tics and rocking, and in turn I would lose more food. My mind clouded and I could no longer concentrate. I would often become so frustrated from this I would end up hurting myself. At the end of the day, at 7pm, I was offered “LOP” (loss of privilege) food. This was made intentionally to be completely unappetizing. It was ice cold, and it was made up of chicken chunks, mash potato, spinach, and then doused with liver powder, then set to sit in the refrigerator for days. The smell alone made me sick. And I never once was able to eat it, no matter how hungry I got.
It was very difficult to sleep at JRC. There are several alarms in the room and over the bed. Every time someone moved in bed it would set a loud alarm off that could be heard throughout the house. Most of us on GED’s had to sleep with the devices on. That means locks and straps that get all tangled around you and make it very hard to lay down in a comfortable way. I was very anxious to close my eyes, always fearing a shock for something I might not have even known I did. My fears came true one day, and I was given a GED-4 shock while I was asleep. It was not explained to me why I got this shock. I was terrified and angry. I was crying. I kept asking why? And they kept telling me “No talking out”. After a few minutes Monitoring called, and told the staff to shock me again for “Loud, repetitive, disruptive talking out.” The next day I asked the supervisor why I had gotten that GED. And she explained that staff had found a small piece of plastic in my self-care box, which contained my shampoo bottles etc, and that they considered this a hidden weapon. I could not believe it. I did not hide anything in my self-care box. I had not done anything wrong. Yet I was shocked for it, and worse off in my sleep. That piece of plastic, of which I was never shown, had probably broken off of one of the plastic containers inside the box. And I was severely punished for this. After this incident I really stopped sleeping. Every time I closed my eyes they would jump open, anticipating that jolt somewhere in my body.
I truly believe that the judges that approve us for the GED have no idea what it really is like. All they have to go on is what JRC claims. The GED does not feel like a “hard pinch” or a “bee sting.” It is a horrible pain that causes your muscles to contract very hard, leaving you sore afterward. I would often have a limp for one or two days after receiving a GED. The devices JRC puts on us are not the same ones they show to the outside world when they let outsiders try the GED. Students wear a different electrode, a long one with 2 metal electrodes that radiate the electricity across a large area.
Besides the physical pain, life with GEDs is a life of constant anxiety. I experienced heart palpitations daily, had a very hard time sleeping and eating, and became rather paranoid, always wondering if I was about to get shocked and constantly alert in all directions. I eventually became very depressed there and contemplated suicide every night. Now, after having been gone almost 4 years, I am still having nightmares and flashbacks during the day, especially when I hear certain noises that remind me of GEDs and JRC.
I want to mention, similar to many other students, I was also tied to the 4-point restraint board and given multiple shocks for a single behavior. And if I screamed out in fear while on the board, I would be shocked for that as well. I was shocked for behaviors I had no control over, such as tensing up and tic-like body movements. We were always having to watch others getting shocked in the room. Hearing others scream, cry, beg to not be shocked. Students would scream “I’m sorry, No, Please!!” all day. I, like other students, would cringe and feel sick and helpless while watching others getting shocked. I was so anxious about getting shocked that I would many times bang my head just to get it over with. The GED often was the cause of my behavior problems. The students that get shocked the most at JRC are non-verbal. So they cannot speak up. I feel that just because we were born different, we are not given the same rights to be protected from tortures like the GED.
We are at the mercy of guardians and judges. When I was brought to court to be approved for the GED, I was not told where we were going or why. I was brought into the courtroom wearing a helmet and restraints on my wrists and ankles. I was not questioned by the judge. All he had to go on was my appearance in those restraints, testimony from JRC officials, and charts of provoked behaviors. These behaviors came from being forced to sit in isolation with a straight upright posture, in the center of a hard restraint board, day after day, week after week, for two months. I received no real help and no socialization. For those two months I was not allowed to sit in a chair, at the classroom or residence. I was to sit on the board. Also, JRC provoked me by not allowing me to shower during those two months. Instead of showers, I was bathed tied to a restraint board, naked, while staff washed me, putting their hands all over me. All in front of cameras, where Monitoring watched, including men. Being tied on a restraint board, naked, with my private areas exposed to the staff in the bathroom and the cameras was the most horrible, vulnerable, frightening experience for me. I would scream out “rape, rape!” And these were recorded as major behaviors for me. When I first arrived at JRC, I was immediately subjected to humiliation and provocation by them forcing me to wear a diaper. I in NO WAY needed or have ever needed a diaper as an adult. I am completely independent in all toilet and hygiene skills. And they knew that. I had NEVER worn a diaper up until that day, except of course when I was a little baby. And that is exactly how they made me feel, like a little baby. I was embarrassed and confused and angry. I took that diaper off constantly. When I would take the diaper off they would mark that down on my chart that they would later show the judge as destructive behavior. I would often get restrained on the 4 point board for taking off the diaper and fighting staff not to make me put it back on. In these ways and more, JRC provoked many behaviors in me that were shown on a chart to the judge. There is no way the judge could know what was provoking my behaviors. JRC told the judges that their program was the only thing that could help me. That theirs is the only last resort treatment.
I was considered a difficult case. I would like you to know that I am doing very well in a new program that is nothing like JRC. I don’t get shocked or put in restraints, and I am given help by staff and doctors that I can talk to. I am not drugged up as JRC claims I would be if I left. JRC made no attempt to understand me. Feelings do not matter to JRC and we were specifically not allowed to express them. I felt like an animal test subject there. My new program does not punish me for my problems, that are the result of having Aspergers Syndrome. I have gotten so much better from getting real help instead of constant punishment and pain.
I ask you to please investigate carefully into the GED. The ones that are actually being used on the students, not the samples JRC provides, as I have experienced them to be extremely manipulative in all things. There are no doctors overseeing us with the GED. Every few years they would drive me to a doctors office near Framingham, Ma, and not tell me why. In his office he would literally walk in, say hi how are you, and before you can answer he has signed their papers and you are shown the door.
I have attached with this email a document I wrote called “The Board” which is about one of JRC’s worst tortures that they used on me and others. I wrote it so that outsiders can feel what we feel, and hopefully to help others understand the agony of GED treatment. I invite you to read it, and I hope it will share a new perspective for you, the perspective of the ones that should matter the most, the human beings on which these devices are being used.
Sincerely,
xxx
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The Board
By: xxx
December 2012
The most sickening, horrifying experience of my life was being shocked on the restraint board. What is the board? It is a large, door sized contraption made out of hard plastic, with locking restraint cuffs on each corner where your wrists and ankles get locked in. Your body becomes stretched spread eagle style, pinned tight, rendering you completely helpless, combined with an overwhelming feeling of vulnerability. It is a torture that you would expect to see in a horror movie. The kind that makes you cringe and scream while you watch. The kind you cant get out of your head even a after it’s over. Only this was happening for real, to me.
They added the restraint board, which for me was 5 shocks over 10 minutes to my program after a few months, which means getting shocked 5 different times, over a period of 10 minutes for having just one single behavior. If you have just one of those behaviors on your sheet, which can be getting out of your seat without permission (even without doing anything violent), tensing your body, anything they decide to put in your program. A behavior is anything you do that JRC considers a problem. Anything from hitting your head, to talking to yourself, saying a swear word, rocking, even screaming from fear and pain of the shocks, is a “behavior”. The staff grab you, put you in restraints, walk or drag you to where the board is kept (usually right in the middle of the classroom with all the other students watching and stepping around you), and than restrain you to the board. Arms and legs locked in. Then the terror starts. You have to wait for it. You never know when it’s coming. The staff shocking you usually hides behind a door or desk so you can not see them. JRC lavishes in the element of surprise when shocking us. Then all of a sudden the searing pain and jolt in your arm or leg or stomach, or sometimes even the fingertips or thigh or even bottom of your feet. Whichever part of the body gets shocked, it will travel throughout. If you get shocked in your arm, for example, it is not a “hard pinch” it is a radiating electricity that will travel from your bicep through to your fingertips. Your whole arm jerks against the restraints, causing added pain from your muscles being forced to contract against being tied up. The loud screech of the device goes off with it, and they say, “(name) there is no tensing up”. One down, 4 to go. Your heart races immediately, and you sweat profusely. All you want to do is throw up. That ten minutes feels like hours. You try to prepare yourself for the next shock. I keep saying in my head, 4 more, 4 more. Please just finish please. Trying not to scream in fear because i will be shocked for that as well. It comes again without warning, next time maybe in your stomach, the stabbing pain runs from left to right, right to left, across your belly button area. Your stomach heaves in and you lose your breath. More sweat now. Your heart beats faster now than you can feel possible. I start to hope my heart stops. Anything to let me away from this. 3 more. But now it’s even harder, I don’t feel I can take any more of this torture. Besides the pain, it’s the panic and fear in your mind. There were times when I peed on myself. One particular time I was put on the board for hitting my head the night before. They said because the staff did not “follow my program”. They put me on the board. They shocked me repeatedly in the stomach. And when they finally got to 5, I thought “it’s over”. But then they didn’t take me off the board. They gave me a 6th, than 7th, than 8th. They kept going. I was so filled with fear, not knowing what was happening or when they would ever stop. I went away in my head. I started floating. I had no more tears left. When they finally stopped after 10, they sent other staff in to “change my batteries”. When they lifted the electrodes off of my stomach, it was stuck. They had to pull because it had burned into my skin. I still have those scars on my stomach. When they took the devices off of me to test them, I was still strapped to the board. Every time I heard the noise from the test, I cried and panicked. The staff attempted to comfort me, she whispered to me so they wouldn’t hear her, because any kind of comforting is never allowed. I was shocked on the board on many separate occasions. One time for something I never even did.
I lived this. These things happened. These things were done to me and I witnessed them done to many others.
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Sample of a Letter to FDA asking them to end use of electro shock devices at JRC
Letter from a former JRC student about her experiences there
Disability, the “Quality of Life,” and Amelia Rivera
The Children’s Hospital of Philidelphia in the United States has allegedly refused to allow two-year-old Amelia Rivera to receive a kidney transplant–even if donated by a family member specifically for the purpose–because they assume her ability to enjoy life–i.e., what they call her “quality of life”–is somehow diminished simply because she has an intellectual disability.
I encourage readers to follow some of these links so they can learn more about the situation and what people are saying about it:
First, read what Amelia’s mother has said.
People wanting to hear from the other side can read a generic statement from the hospital (though it does not refer to Amelia Rivera by name) at CHOP’s Facebook page.
For people familiar with their excellent work, it should be no surprise that the organization “Not Dead Yet” has blogged on the situation as well. (For those not familiar, “Not Dead Yet” campaigns to educate medical personnel and the general public to stop assuming that having a disability means that your life somehow is no longer worth living.)
If you want to find many more links to what many other bloggers have said, visit the Children with Special Needs page at About.com.
I would argue that CHOP’s decision to refuse a kidney transplant for Amelia Rivera would be in violation of international law: learn more about the Convention on the Rights of Persons with Disabilities (CRPD), in particular Article 5 (non discrimination and equality) and Article 10 (Right to life). I feel doctors need better education about the real lives of real people with disabilities and how we actually experience our lives–this would relate to Article 8 in the CRPD which calls for countries implementing the CRPD to take action to raise awareness about human rights for people with disabilities.
A petition urging the hospital to allow Amelia Rivera a kidney transplant is available at the Change.org site.
The Change.org site also has another petition urging change in policies affecting decisions about organ transplants nationwide in the United States.
Thank you to Dave Hingsburger for helping bring this situation to my attention. Speaking of Dave, it seems suitable to mention that he is heading a campaign for people to use the date of January 23rd as an “International Day of Mourning and Memory” to honor the memory of people with disabilities who have lived and often died in institutions never knowing freedom (there’s a facebook page on this also). He also wants for the day to celebrate people with disabilities who have advocated for their own value of life–for example, a woman with Down Syndrome named Sandra Jensen who successfully fought against a hospital’s decision to refuse her a life-saving organ transplant. This day could also be used as a day of action to help bring freedom to the millions of people around the world who still suffer in various types of institutions. If this interests you, a few organizations you may want to investigate include ADAPT, People First (self advocacy movement led by people with intellectual disabilities, there are chapters around the world try googling for one in your country or region), Disability Rights International which fights against the institutionalization of children with disabilities, and various self advocacy organizations led by autistic people such as ASAN. And there are many more organizations you could investigate, so please don’t view this as a comprehensive list.
Read Full Post | Make a Comment ( 1 so far )Deaf and Disabled Women Activists Change the World!
Let me share with you one of the most amazing music videos you’ll ever see! I have met the women in this video–both the Deaf women and the women with all different kinds of disabilities–and they are some of the most awesome, passionate, visionary, world changing women leaders I have had the honor to have met. These 54 women from 43 different countries are doing incredible things in their home countries, changing society one little corner at a time so that it is more inclusive of Deaf and disabled women everywhere. Please, PLEASE — go watch this video!! Then when you’re done–please get a YouTube account (if you don’t already have one) so you can leave a positive comment about it. And click on the “like” button (looks like a thumbs up sign). Then click on the “Share” button so that you can tweet it … and facebook it … and otherwise share it with every person you know. Then encourage them to do the same thing. I want for the WHOLE WORLD to watch this video!
Can you feel their love and passion and energy just pulsating off the screen at you? I came home with an AWFUL headache tonight and just wanted to go to sleep … but when I watched this video, it had me tapping my toes and signing and singing right along with them! You will do the same — PLEASE GO WATCH RIGHT NOW!
The song is sung in English, Arabic, Spanish, and American Sign Language with English captions.
Disabled women activists change the world through YouTube music video: Loud, Proud and Passionate!(SM)
January 6, 2011 – Signing and singing with passion in Arabic, Spanish and English, 54 disabled women activists from 43 countries celebrate the achievements, pride and solidarity of women with disabilities around the world. These leaders are revolutionizing the status of women and girls worldwide. Filmed during MIUSA’s 5th International Women’s Institute on Leadership and Disability (WILD), the Loud, Proud and Passionate!(SM) music video release marks the beginning of MIUSA’s 30thAnniversary year-long celebration.
Watch and share the YouTube link:
Music Video: Loud, Proud and Passionate!(SM)
http://www.youtube.com/watch?v=uxxomUVsSik
Our goal is to reach 2,500 views and to raise funds through donations for the next WILD program empowering women and girls with disabilities. Every donation large or small brings us closer to that goal! To donate, visit http://www.miusa.org/donate/wild.
WILD delegates in the video come from Albania, Algeria, Argentina, Armenia, Australia, Bangladesh, Botswana, Burkina Faso, Cambodia, Cameroon, Chile, China, Colombia, Dominican Republic, Ecuador, El Salvador, Ethiopia, Gambia, Ghana, India, Indonesia, Iraq, Jordan, Kenya, Kyrgyzstan, Lesotho, Macedonia, Malaysia, Mexico, Nepal, Nigeria, Palestinian Territories, Peru, Philippines, South Africa, Sri Lanka, St. Lucia, Syria, Turkey, Uganda, United States of America, Vietnam, Zambia and Zimbabwe.
The video is captioned. For the text video description in English click here.
Mobility International USA (MIUSA) is a non-profit organization whose mission is to empower people with disabilities around the world to achieve their human rights through international exchange and international development. For more information visit www.miusa.org.
Read Full Post | Make a Comment ( 1 so far )Former US Congressman Tony Coelho Calls for YOUR support for US ratification of Disability Rights Treaty
Yes, the following message below from Tony Coelho very much applies to the culturally Deaf community, also. The original Americans with Disabilities Act, of course, helped give Deaf Americans better access to land line telephones via the TTY relay service (20 years ago) and the video relay service (today). The Convention on the Rights of Persons with Disabilities, among other issues, protects the right of Deaf people and people with disabilities to have access to information and communication. It specifically refers to signed languages in several different articles. More information about the CRPD, including its full text, is at http://www.un.org/disabilities. For information on CRPD ratification efforts in the US, please visit http://www.usicd.org.
A Message from the Honorable Tony Coelho on the Occasion of the ADA’s 20th Birthday
On this 20th anniversary of the Americans with Disabilities Act, we have much to be proud of as a community. A little more than twenty years ago, we embarked on a historic journey in advancing civil rights for Americans with disabilities. We came together with one voice, putting aside our political and other differences, to work toward this cause, and we were joined by our partners in Congress, who put aside their differences to do the same. And this unity and bipartisan spirit both within our community and in Congress led to our success. We could not fully imagine then the profound impact our civil rights struggle and work to pass the ADA would have for people with disabilities around the world. Today, inspired by the ADA, our brothers and sisters in scores of countries have worked to pass their own pioneering legislation to protect and promote their inherent human and civil rights.
What’s more, the world community came together at the United Nations at the start of this century and did something that is changing the world. They worked to create international law recognizing, protecting, and promoting the rights of all people with disabilities-the Convention on the Rights of Persons with Disabilities. Americans with disabilities joined them in this effort, sharing our experience with the ADA to strengthen the provisions of this human rights legislation. The disability rights movement now encompasses a global community.
But our work to strengthen and implement the promise of equal rights for people with disabilities at home and abroad remains unfinished. We have no doubt created a pillar of domestic law, but we must now work to ensure that the United States remains a global leader in the disability rights arena by ratifying the Convention on the Rights of Persons with Disabilities, which President Obama signed last July. Ratifying this landmark treaty will not only advance the promise of the ADA at home, it will give the disability rights movement a new vigor abroad with the clear message that the United States affirms the inherent dignity and human rights of all people with disabilities.
I am excited by the energy and enthusiasm of USICD in working toward CRPD ratification. I want to thank USICD President, Marca Bristo, and our Executive Director, David Morrissey, for their leadership in this effort. I ask you to join with me in supporting USICD in the important effort of making CRPD ratification in the United States a reality. When the Obama Administration completes its review and submits the CRPD to the U.S. Senate for its consent for ratification, we must come together as the American disability community and proclaim “Yes to Ratification.” Today, 88 countries have already ratified the CRPD. By joining in this community, we can share our great expertise and leadership in furtherance of the democratic values enshrined in the CRPD. The CRPD is good for people with disabilities, good for America, and good for the world.
Let us take this opportunity to deliver our unified message to the U.S. Senate. Please sign on to a letter prepared by USICD to Senators Kerry and Lugar of the Senate Foreign Relations Committee to indicate your support for the CRPD. Please follow this link to sign on.
Sincerely,
Tony Coelho
Read Full Post | Make a Comment ( None so far )The Trouble with Jerry Lewis
Subject: The Trouble with Jerry
Dear members of the Facebook group “Tell Oscar — NO humanitarian award for Jerry Lewis!” –
The Oscar Awards ceremony is now just 20 days away. As it approaches, “The Trouble with Jerry” campaign is mobilizing disability community leaders, activists, and allies to protest the “humanitarian award” to Jerry Lewis.
Here’s the latest news:
*We have a newly-designed, easy-to-navigate, super-jazzy website! Go to http://thetroublewithjerry.net and then tell everyone you know about it, post the link on your Facebook page, link your blog to it, etc. Remember, that’s
http://thetroublewithjerry.net
*We are seeking organizations to endorse The Trouble with Jerry campaign, and in particular the letter we sent to the Motion Picture Academy. Does your organization want to lend its official endorsement to the letter? If so, please message me back. You can read this letter at http://thetroublewithjerry.net%2Fletter-to-the-academy
*NOW is the time to start organizing an Oscar protest in your town. Contact me if you are thinking about doing this, and I’ll help you get started.
*Also, let me know as soon as possible if you’re planning to come to LA for the national Oscar protest actions on February 20, 21, and 22. We are holding a limited number of accessible hotel rooms, so let me know if you need lodging.
In solidarity,
Laura
The above letter was recently circulated to the Facebook group Tell Oscar — NO humanitarian award for Jerry Lewis!
People who have a Facebook account will want to follow the above link to join the Facebook group organizing protests against Jerry Lewis’ homophobia, sexism, and pity-drenched attitude toward people with disabilities. But if you don’t have Facebook, you can still get involved by visiting http://thetroublewithjerry.net/, or by sending an email to info@thetroublewithjerry.com.
Visit Bloggers Protesting Pity to learn why bloggers are protesting pity.
Read Full Post | Make a Comment ( 1 so far )On-going Human Rights Violation: Woman Being Denied Basic Care
We in the disability human rights community have an opportunity to save a life. A quick summary: a woman with disabilities in Sudsbury, Ontario, Canada (Minna Mettinen- Kekalainen) is SUPPOSED to be receiving home care services. The North East Community Care Access Center has been denying her these services. Minna says this is because she had complained about their nurses because they had failed to follow her doctor’s orders. Minna was on a prolonged hunger strike, starving herself to death in an attempt to pressure the CCAC to provide her the services she needs. She has started eating again, at least for now. But she is still being profoundly neglected. Please take a few minutes to support efforts among disability rights activists to save her life.
1. First, read more about the situation at the following two links. You will also want to read the comments that people have left, because people are using the comments area at this blog page to exchange more information and ideas on how people can help: http://ballastexistenz.autistics.org/?p=572 and http://ballastexistenz.autistics.org/?p=573
2. Send an email to the following people to urge them to intervene on Minna’s behalf so she can receive the home care services that she is asking for: Sudbury MPP Rick Bartolucci Constituency Office email: rbartolucci.mpp.co@liberal.ola.org
Ministry of Community Safety & Correctional Services email: rick.bartolucci@ontario.ca
Minister of Health & Long-Term Care David Caplan: ccu.moh@ontario.ca
Non-Canadians can use these email addresses, too. If enough individual people write to them, they may take notice.
3. Consider also communicating with the North East Community Care Access Center on Minna’s behalf. This is the center that is refusing care to Minna (unfortunately there seems to be no email contact for them):
North East Community Care Access Centre (the centre that is refusing care to Minna)
Head Office/Sudbury Branch
1760 Regent Street
Sudbury ON P3E 3Z8
(705) 522-3461 or 1 (800) 461-2919 (Sudbury
To access the Long-Term Care ACTION Line call: 1-866-876-7658 or TTY: 1-800-387-5559.
(More detail on their Complaints and Appeals Process at http://tinyurl.com/aeu6vt)
4. Also consider communicating with the Maison Vale Inco Hospice–this is a different place (NOT related to the North East Community Care Access Center), and Minna would like to be admitted there.
Maison Vale Inco Hospice (the place Minna hopes to gain admittance to)
(705) 674-9252
1028 South Bay Rd. Sudbury, ON P3E 6J7
Website: http://www.maisonsudburyhospice.org/
Resident Care Coordinator Elaine Klym: elaine@maisonsudburyhospice.org
Executive Director is Léo Therrie
5. If you will be in Ontario on January 23, consider joining a protest and march on Minna’s behalf.
6. Join the Facebook group, “Minna’s Hunger Strike–Call to Action for an ALS Patient Denied Care” to learn the latest news on what is happening with Minna’s case and what people are doing to help. If you are not already a member of Facebook, it only takes a few minutes to sign up for a free account.
7. Please circulate this text further via your network of contacts in the disability and human rights communities, Facebook page, blog site, etc.
Thank you for taking action.
Read Full Post | Make a Comment ( 7 so far )Updates on Protests Against Jerry Lewis’ Humanitarian Award
Subject: Four Important Items
To members of Tell Oscar — NO humanitarian award for Jerry Lewis! —
I have four important updates to pass along to you:
1. HOLLYWOOD PROTESTS: We are still planning protests during Oscar weekend in Hollywood, on February 20, 21, and 22. If you can be there for any or all of those days, now is the time to start making travel arrangements. Airfares are still pretty reasonable. If possible, find lodging somewhere near the Metro’s Red Line, so you can get to the protest locations more easily.
2. DONATIONS: The Disability Rights Center has agreed to accept donations to support this campaign. If you want to contribute money to help with protest materials, or travel expenses for lower-income participants, it would be greatly appreciated! You can make a tax-deductible donation payable to the Disability Rights Center, and mail it to: Disability Rights Center, P.O. Box 313, Rhododendron, OR 97049.
3. LOCAL PROTESTS: Some people are starting to organize Oscar protests in their local communities. If you want to organize an action, feel free to use “The Wall” on our Facebook group page. You can post a message as simple as, “Anyone interested in an action in [your city's name]?” And check the wall to see if anyone is doing anything in your area. Use this resource to connect with each other. You can also send me announcements about your plans, and when I get several, I’ll send out another message with that information. (Don’t rely just on Facebook, though…. Contact your friends and colleagues, urging them to join you in voicing opposition to this humanitarian award for Jerry Lewis.)
4. WEBSITE: We now have a website at http://www.thetroublewithjerry.com where we will be adding some information and resources in the weeks to come.
That’s it for now. Feel free to send Laura Hershey a message if you have questions, ideas, resources, or announcements.
In solidarity,
Laura Hershey
Join the Facebook group … Sign the petition … read a short text about the protests that can be copy/pasted into an email message to your friends … Read what is being said by various bloggers protesting pity … or write a letter of complaint directly to the Academy of Motion Picture Arts and Sciences.
Read Full Post | Make a Comment ( None so far )Deaf ASL-Users Are Protesting Pity!
Culturally Deaf people are standing in solidarity with people with disabilities protesting against pity.
No one likes it when others pity us for who we are: pity demeans us and de-humanizes us. At best, pity may trigger a momentary impulse to donate a few dollars to charity—for example, via Jerry Lewis’ annual US telethon for Muscular Dystrophy. But the pity remains entrenched long after the fundraising events are over. And people don’t just pity the people they give money to. They usually end up pitying any one who they think have disabilities, including people who may not even identify that way—for example proud, ASL-using, culturally Deaf people.
People who pity people with disabilities—or Deaf people—usually never think to challenge the assumption that we should be passive recipients of charity. They don’t think to question why we must still confront barriers to full participation in society, for example the lack of captions or sign language interpreters in many contexts where we need them. Fueling pitying attitudes undermines progress toward social equality for people with ALL disabilities. And, yes, the same pity also hurts Deaf people, INCLUDING Deaf people who abhor the idea that Deafness could equate “disability.” Individuals who pity people with disabilities may be more resistant to explanations about Deaf culture and the important cultural and linguistic issues that affect Deaf people because they are too busy pitying Deaf people for being unable to hear. People who respect the fundamental dignity and human rights of people with disabilities will also be more likely to listen to Deaf people when we talk about the importance of ASL and promoting pride in Deaf culture. People who pity spend less time listening because they mistakenly believe that pity is a noble emotion that they need to preserve by distancing themselves from the real lives, feelings, and beliefs of the people they are trying to pity. (These people need to learn the difference between pity and empathy, http://reunifygally.wordpress.com/2009/01/10/protest-pity/)
The Academy of Motion Picture Arts and Sciences has announced that it will give Jerry Lewis its Jean Hersholt Humanitarian Award on February 22, 2009. Both Deaf rights activists and also disability rights activists object to this award. During his decades of hosting the Labor Day Telethon, Jerry Lewis has perpetuated negative, stereotypical attitudes and pity toward people with muscular dystrophy and other disabilities. And, again, much of the pity that Jerry fuels has ALSO harmed progress for issues important to culturally Deaf, ASL using people as well.
Read and sign the petition protesting this award at: http://www.petitiononline.com/jlno2009/petition.html Strengthen the impact of your signature by using the comments area in the petition to explain in your own words why you support this petition. (Don’t be fooled by the tiny size of the comments window: if you wish, you can fit in several long sentences.)
Join the Facebook Group that is coordinating efforts to protest the award: http://www.facebook.com/group.php?gid=40538392681
Read what other bloggers say about the award, and why both the Deaf community and also the disability community is angry, at http://reunifygally.wordpress.com/bloggers-protesting-pity/
And write your own letter of complaint directly to the Academy of Motion Picture Arts and Sciences at: http://www.oscars.org/contact/general.html. Polite, tactful letters usually work best.
Please circulate this text freely. Thank you.
Read Full Post | Make a Comment ( None so far )Time for Oscars to Support, Not Undermine, Deaf and Disability Rights
People in the Deaf, Autistic, Muscular Dystrophy, and Disability communities will be gathering in Los Angeles, California, USA, near February 22, 2009, to tell the Oscar awards organizers that human rights is more helpful to people with disabilities than pity or charity.
If you didn’t already know, the Academy of Motion Picture Arts and Sciences has announced that it will give Jerry Lewis its Jean Hersholt Humanitarian Award on February 22, 2009. This award primarily recognizes his years of work raising money through his annual telethon for the Muscular Dystrophy Association. Disability activists, including many who have muscular dystrophy, object to this award because Jerry has perpetuated negative stereotypes of people with disabilities. Yes, he also raised money for research–research that some among the protesters may support. But their message is that the end does not justify the means. Jerry could have, and should have, chosen fund raising tactics that would not do so much destruction to the efforts of disability rights advocates to gain recognition for the fundamental dignity and value of people with disabilities. By projecting us as pathetic, helpless creatures, Jerry’s tactics has made it harder for usto be judged on our actual merits for the jobs we apply for–rather than on other people’s mistaken assumptions about what people with disabilities can and cannot do.
Read more in the announcement below that was recently circulated among members of the Facebook Group organizing these protests against Jerry’s award. If you haven’t already, you may also wish to sign the on-line petition protesting Jerry’s award.
Subject: UPDATE: Oscar Protests Being Planned
Put it on your calendar! Actions are currently being planned to take place before and during the Academy Awards ceremony. Can you come to Los Angeles to participate in two BIG actions on Oscar weekend, February 20 and 21? Can you organize a local action in your community on or around February 22?
If you want to be part of the protest at the Oscars in LA, now is the time to make airline reservations and other travel arrangements. Plan to be in LA at least 2/20 and 2/21, and 2/22 if possible. We’ll send out information soon about a nearby accessible hotel, and about the specifics of the protest actions.
If you want to organize an action at a local Oscar party or other appropriate target, get the ball roling now! Find local Oscar events — perhaps sponsored by your local film society, charity, or media outlet. (Try a Google search with the terms “2009 Oscar party [your city name].”) Talk to local disability, LGBT, and feminist activist/advocacy groups. Even if you can only get a dozen or so people involved, you may be able to pull off a great action, and get some press coverage to raise public awareness. Stay tuned for more tips on organizing a local protest…
Jerry Lewis advised his critics to “stay in your house!” Whether you come to LA, or do a local action, you’ll be letting Lewis — and everyone else — know that you’re not going to let prejudice, ignorance, and shame keep you inside your house, OR keep you quiet!
Learn about protest planning and other activities through the Facebook group organizing action against Jerry’s humanitarian award: http://www.facebook.com/groups.php#/group.php?gid=40538392681
Sign the on-line petition protesting Jerry’s award. You are encouraged to use the comment line in the petition to explain why you have chosen to sign the petition: this will strengthen the value of your signature: http://www.petitiononline.com/jlno2009/petition.html
See what bloggers have been saying about Jerry’s award:
http://reunifygally.wordpress.com/bloggers-protesting-pity/
Learn more about why people with disabilities object to the tactics Jerry uses to raise money via his annual telethon: http://www.cripcommentary.com/LewisVsDisabilityRights.html
And also see many excellent blog posts from last year at: http://karasheridan.com/?p=164
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