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Dear Friend,

We are excited to present our first e-book, And Straight on Till Morning: Essays on Autism Acceptance, for this year’s Autism Acceptance Month. You can download the ebook for only $2.99 on Amazon. And Straight on Till Morning is part of an ongoing campaign to shift April from discourse about autism awareness toward discourse about autism acceptance, centering Autistic voices and creating a more inclusive, accepting world.

And Straight on Till Morning: Essays on Autism Acceptance features a collection of essays and blog posts originally posted to our website for Autism Acceptance Month last year. The writings selected forAnd Straight on Till Morning build on our tagline for Autism Acceptance Month-“Acceptance is an action.” The authors are Autistic people and allies, who write about the need for moving beyond awareness and toward acceptance; the ways in which awareness fails our community; and what acceptance can look like in practice in the community.

We invite you to[url=http://www.amazon.com/And-Straight-Till-Morning-ebook/dp/B00C35BDFG/ref=sr_1_2] download [/url]And Straight on Till Morning today and share it with your best friends, worst enemies, colleagues, and random strangers on the street.

Happy reading,

Julia Bascom
Autistic Self Advocacy Network

This week, the Autistic Self Advocacy Network (ASAN) released a new policy brief on discrimination against people with intellectual and developmental disabilities in organ transplantation. In the twenty-three years since the passage of the Americans with Disabilities Act, people with disabilities have achieved much progress in securing our rights in a wide variety of settings. Unfortunately, the field of medical decision-making remains too often immune from civil rights law. In few places is this as evident as in the context of organ transplants, where our policy brief outlines widespread discriminatory practice. Many people with I/DD fail to even make it to the evaluation process, and those who do are frequently denied access to transplants on the basis of their disability. Eighteen years after the landmark Sandra Jensen case in California, it is long past time for action on this issue.

On Tuesday, ASAN, the National Disability Rights Network and Not Dead Yet met with senior leadership in the Department of Health and Human Services to urge the federal government to issue new guidance addressing discriminatory practices in organ transplantation. Our brief provides comprehensive documentation on this issue and offers next steps for regulators, legislators, funders and activists. Produced with the generous support of the Special Hope Foundation, this will be the first of several policy briefs produced by ASAN this year examining the issue of access to health care for people with intellectual and developmental disabilities.

We invite you to download a copy of Organ Transplantation and People with I/DD: A Review of Research, Policy and Next Steps on our website by clicking here. Help us spread the word about discrimination in organ transplants – together, we can achieve equal access for all of us.

Hello friend,

At the beginning of March, our community came together to remember and mourn for disabled people killed by family members and caregivers. In a dozen cities, we gathered with our friends and allies to ensure that no one in our community would be forgotten. In doing so, we were reminded not only of the terrible things that too often happen to us – but also of the real value of communal space. In coming together, we are able to face even the most horrific of crimes.

As we approach April, this bears remembering. For many years now, Autistic people have dreaded April, knowing that Autism Awareness Month typically brings with it the worst kind of pity and fear-mongering. Does it really have to be this way? What if we built a different April, centered around the experiences of Autistic people ourselves? What if we stood up together to say awareness is not enough? This April, we are asking you to help us make a change for the better. Starting later this month, ASAN will be launching a campaign to re-brand April as Autism Acceptance Month.

We are setting up a website to help publicize events across the country and you can be a part of it. We want you to set up an Autism Acceptance Month event in your local community and let us know about it!

Check out our tip sheet on the ASAN website for ideas about local community events you can organize. Then let us know about it at acceptance@autisticadvocacy.org and we will work with you to help publicize your event and connect you to Autism Acceptance Month festivities. We will be working on this from now until the end of April, so don’t hesitate to contact us if there’s anything we can do to help you in your efforts. In addition, we want everyone to be involved – whether you are Autistic, family member, professional or an ally without any formal connection to the Autistic community. All are welcome.

All of us have a stake in making April about something real. At the end of the day, awareness is not enough. Together, we can do better. Will you join us?

As always, Nothing About Us, Without Us!
Ari Ne’eman
President
Autistic Self Advocacy Network

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ASAN Day of Mourning on March 1st

Dear friends,

Last year, the Autistic Self-Advocacy Network, along with Not Dead Yet and the National Council on Independent Living, held a Day of Mourning for people with disabilities killed by their relatives and caregivers.

Day of Mourning began as a response to the murder of George Hodgins, a 22-year-old autistic man from California, and to the way people were talking about his death. Far too often, when a disabled person is murdered by a caregiver, journalists write as though it is the disabled victim who has perpetrated a crime simply by existing. In discussing the killing, people say that we should feel sorry for the murderer, because they had to live with a disabled relative. When a disabled person is murdered, many people act as though the murder victim’s life, not their death, was a tragedy.

On March 30th, 2012, we held vigils in 18 cities to remember those we have lost, and to remind the world that their lives had value.

On March 31st, 2012, a 4-year-old autistic boy named Daniel Corby was drowned in a bathtub by his mother.

There is so much work to be done to change public perceptions about the worth and the quality of our lives. That is why the Autistic Self-Advocacy Network will be holding Day of Mourning again this year on Friday, March 1st. And I need your help to organize vigils across the country.

The first time I organized a vigil, I was very scared to do it, but it was not as hard as I feared. If you are interested in leading a vigil in your area, you begin by finding a good spot for it, making sure you can gather a group of people there, and spreading the word to your local community. If you want to organize a vigil, contact me at zgross@autisticadvocacy.org for instructions and support. I will help you find a location and to plan and publicize your event.

On March 1st, we will remember our dead and take a stand against the violence facing our community. I hope to see you there.

In solidarity,
Zoe Gross
Autistic Self Advocacy Network

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Ari Ne’eman on Al Jazeera

Ari Ne’eman: Stop blaming the ‘other’
American autism rights activist talks to Al Jazeera about the role of mental illness in the US gun control debate.
Inside Story Americas Last Modified: 02 Feb 2013 12:51

Guns, Culture and Crime in the US – in a special three-part series, Inside Story Americas takes the debate on gun control to the American people. Are they as divided as their politicians?

Ari Ne’eman is an American autism rights activist who co-founded the Autistic Self Advocacy Network in 2006.

He talks to Al Jazeera’s Shihab Rattansi about the Newtown shooting and the role of mental illness in the US gun control debate.

Ari Ne’eman: I think that it’s obvious there is a lot to be done on mental health policy in this country. Unfortunately, if you were to try and think of the single worst time to have that conversation, it would most likely be in association with violent crime and gun violence. The fact of the matter is people with psychiatric and neurological disabilities are no more likely to be committing violent crime than the general population. And when we look at mental health policy reform from the prism of violence, we end up with bad mental health policy.

Al Jazeera: But, are you suggesting that addressing mental illness and the problems of care have no role to play in the gun control debate or in the debate about mass gun shootings?

Ari: Well, I am suggesting that if we are talking about what drives this kind of violence, it’s not people with psychiatric disabilities. And, it’s certainly not the kind of proposals that have been put forward: the NRA talking about a national database of people with mental illness, the New York state legislature extending forced treatment law that many advocates find particularly concerning, putting more police officers in school and potentially furthering the school-to-prison pipeline.

What effect did the focus on Asperger’s syndrome have after the Newtown massacre?

Ari: Well, a number of folks reported from our membership an increase in discrimination. Many families reported that schools were now looking at their children with additional suspicion. People who had perhaps recently made the decision to come out of the closet about their diagnosis at work, or in their relationships, suddenly started to feel that may have been a mistake and that discrimination might be on the rise. One of [the] things that I found particularly concerning is that there was an effort on the part of some to try and say ‘well we don’t really need to have a conversation about gun violence in this country, all we need to do is have a conversation about people with psychiatric disabilities’. And, frankly, that’s not the case. If we look at the research and evidence, there is no relation between Asperser’s syndrome and violent crime. If we look at the broader scope of disability, say another diagnosis, psychiatric disability or mental illness, we find a similar lack of correlation. In fact, even when we look at the small subset of people with psychiatric disabilities who some studies have found to have an increased correlation with violent crime, that correlation disappears when we control for substance abuse. That’s actually one of the only things that does tend to correlate with violent behavior—a history of substance abuse, but not so much a mental illness or an autism spectrum disorder diagnosis.

Is there any correlation, for example between I think the study has just been done, between the availability of psychiatric beds and gun violence?

Ari: Absolutely no connection. This is important because many commentators in the aftermath of Newtown decided to blame the institutionalisation. One of great civil rights success stories in disability policy over the course of the last 30-40 years has been moving people with disabilities out of institutions and into the community. Tom Perez—the Assistant Attorney General for Civil Rights in the Obama administration—he said during his installation ceremony in 2009 that segregating people with disabilities in institutions is as wrong as segregating African American children in inferior schools.

President Obama also talked about Project AWARE and he described it as this: schools working with law enforcement and mental health agencies to ensure that those showing mental health strains can get help. Clearly, should law enforcement have a role when it comes to the delivery of mental health care do you think?

Ari: I think we have great police force in this country, but it runs into problems when we ask it [to] do things that they are not trained to do and frankly that police officers don’t want to do. Police officers aren’t mental health care professionals and they are not educators. Their interests and students’ interests are going to be better served by approaching the job of the police as law enforcement and the job of the school system as education and the job of the mental health system, which yes we do need to fund more effectively.

Why do you think then there is this focus on and this consensus on the issue of mental health care then after something like Newtown as opposed to other issues?

Ari: The gun lobby is powerful and the disability rights lobby is considerably less so. And that, I would say, describes a considerable portion of it. I mean, let’s be honest here – it is very difficult to have meaningful legislative action on some of the broader issues relating to gun violence. People would like to believe that this problem lies with some kind of ‘other’. You see this in lot of instances. When there is an instance of violent crime involving an African American or Hispanic youth, people start talking about gang violence. When there is an instance of violent crime involving Muslim Americans, people talk about terrorism. When the shooter is a Caucasian male people suddenly look to psychiatric or neurological disability because it’s some way of saying the problem isn’t here at home, the problem is over there with those kinds of people. That’s wrong. It also leads to terrible public policy.

http://www.aljazeera.com/programmes/insidestoryamericas/2013/02/201321233927293618.html

Female Aspie survivor of JRC

posted at AFF by Ana54

***THE TRUE HORRORS OF ABOUT THE JUDGE ROTENBERG CENTER***
This account by a survivor of the Judge Rotenberg Center, who has requested anonymity, has just been shared via email to several activists and advocates. This is an incredibly vivid and horrifying story that illustrates why this facility MUST be shut down. WARNING: The content in this story is extremely disturbing and graphic; please read at your discretion.

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.

ASAN January 2013 Newsletter

ASAN January 2013 Newsletter

Message to the Community
Ring out the old, bring in the new. 2012 came and went in a flash. We here at the Autistic Self Advocacy Network are excited at the prospect of a new year. 2012 came and went in a flash: vigils, our first Autism Campus Inclusion summer leadership academy, policy briefs on the DSM 5, and the launch of the Loud Hands Project, to say nothing of the work of our local chapters–too much to list here! As a community, we grew, bringing in new staff, new board members and new chapters. And we we embark upon 2013, we know that this year is already even bigger, better, and busier!

What does 2013 look like for ASAN? You will see in the coming articles that our projects are already in full motion. Our chapters are going strong, with some leaders speaking at conferences, creating their own events, or becoming 501©3’s. Our second annual Autism Campus Inclusion summer leadership academy is taking applications, our resume bank is growing, and our policy briefs on disability and health care with Special Hope are forthcoming. We will be remembering those taken from us with a new round of vigils in March, and celebrating the Autistic community during our 2nd annual Autism Acceptance month. As we begin exciting new projects, publishing initiatives, and policy work, we invite you to join us in the coming year, whether as a volunteer, by starting or joining a chapter or just becoming a member.

When all is said and done, ASAN is no more than the community we serve. We strive to make the Autistic community heard in all conversations about us. We cannot do that without all of you! Let’s march together as we push through the barriers created around us.

ASAN Projects for the Coming Year
Caroline N.

As we look forward to the rest of the coming year, the Autistic Self Advocacy Network is excited to announce several new initiatives, and to report progress on ongoing projects.

The Loud Hands Project and Other Publications

Last month, we announced the publication of The Loud Hands Project, an anthology of essays written by Autistic people, about various personal and societal issues related to autism. The collection, available via print and e-book, is the initial, founding document for a larger transmedia project, and we will be implementing the next phases of The Loud Hands Project in the near future. This will include launching an in-depth, interactive website that will provide information and resources related to self-advocacy, provide a platform for ongoing text and video submissions, and serve as a hub for the Autistic community. The purpose of The Loud Hands Project is to provide a space for Autistic people to make their voices heard. The project is spearheaded by ASAN staff member Julia Bascom. More information can be found on The Loud Hands Project Tumblr.

The release of the printed anthology component of the The Loud Hands Project also marks the launch of ASAN’s in-house publishing initiative, The Autistic Press. This is a continuation of our ongoing, successful effort to produce quality printed resources addressing the needs and concerns of the Autistic community. We are currently preparing additional manuscripts for publication in the very near future, including an anthology on autism and employment, and another collection about relationships and sexuality.

ACI Summer Leadership Academy

This year will also mark the return of our Summer Leadership Academy, as part of the Autism Campus Inclusion Project (ACI). The program provides Autistic students with training and tools to support successful self-advocacy on their college campuses. The ACI Summer Leadership Academy is currently accepting applications from Autistic college students who have at least one year remaining before graduation.

Ongoing Advocacy, Support, and Collaboration

In addition to these projects, in 2013 ASAN will be developing technical assistance for projects related to hidden disabilities and employment, continuing our policy advocacy with regard to housing, healthcare, and employment, and continuing to expand our corporate partnership. As we keep moving into 2013, we look forward to your continued support and collaboration.

Autistic Adults and Healthcare
Lydia B.

Disabled people have had a long history of lack of access and opportunity in employment that unfortunately continues today, with developmentally disabled adults having the highest rates of unemployment and underemployment among all categories of disabled people. This extends to Autistic adults, who are significantly more likely to be unemployed or underemployed than non-Autistic adults. This problem is further compounded by the simple fact that many Americans receive health insurance as a benefit of employment or otherwise are only able to afford their health insurance plans because of their employment.

The Affordable Care Act (ACA) will eliminate many former barriers to health insurance and thus, access to healthcare, for disabled adults by prohibiting insurance companies from denying coverage because of “pre-existing conditions,” ending annual and lifetime dollar limits on benefits, extending Medicaid eligibility to childless adults, and allowing young adults to remain on their parents’ insurance plans until they are twenty-six.

Many Autistic adults receive public assistance funding through housing vouchers, such as Section 8 or Social Security Supplemental Income (SSSI), because they are not earning sufficient pay to be financially independent. One crucial component of the ACA provides incentives to states for expanding Medicaid coverage to residents whose annual income falls within 133% of the federal poverty line. Such expansions of Medicaid coverage will impact around 3.5 million disabled adults who previously could neither afford private health insurance nor were eligible to receive Medicaid assistance.

The ACA also allows young adults to receive coverage under a parent or guardian’s insurance plan until the age of 26. Autistic youth are more likely to live for longer with a parent or guardian, more likely to face a variety of barriers to attending or completing postsecondary education, and more likely to face increased difficulty in obtaining and keeping employment after completing their education. As a result, Autistic youth are far less likely to be able to afford private insurance or to receive insurance coverage as an employment benefit than non-disabled youth.

In another move that may impact many Autistic adults and those with other developmental disabilities, the ACA expands Medicaid coverage for comprehensive community-based personal attendant services in addition to strengthening and incentivizing coverage for home and community based services (HCBS) over coverage for services provided in institutional settings. Most importantly for Autistic adults, however, the Affordable Care Act prohibits insurance providers from denying or terminating coverage because of a pre-existing condition, which was formerly a common practice and the frequent cause of denial of insurance coverage for Autistic adults who could otherwise afford private insurance.

Nevertheless, despite the monumental changes in the law that will provide greater access to healthcare for Autistic adults, we face a crisis within a medical community that operates in largely inaccessible environments and lacks any meaningful understanding of effective means of respectfully serving Autistic people seeking either routine or specialized medical care. A paper recently published through the Academic Autistic Spectrum Partnership revealed significant disparities in healthcare impacting Autistic adults across the United States, leading to questions of how the medical field can develop professional standards of education and training to vastly improve cultural competencies for serving and accommodating Autistic adults.

In the absence of accessible literature and health education, Autistic youth and adults will be unable to make informed decisions about healthcare, medical providers, and medical procedures. Similarly, medical professionals lacking cultural competencies in serving Autistic adults will further contribute to the existing healthcare disparities adversely affecting our community regardless of legal reforms seeking to advance access to healthcare. Legal access should not be conflated with functional accessibility. More community-based research and reform of current practices will be necessary to address these growing disparities, and the medical community should look to the Autistic community for guidance.

ASAN Thanks A Visionary Leader for Four Years of Trailblazing
ASAN

On Wednesday, January 9th, Secretary of Labor Hilda Solis submitted her resignation to President Obama. She was initially confirmed as Secretary of Labor in February of 2009. According to NPR, Solis said of her resignation, “Growing up in a large Mexican-American family in La Puente, California, I never imagined that I would have the opportunity to serve in a president’s Cabinet, let alone in the service of such an incredible leader.”

Solis is the first Hispanic woman to serve in a Cabinet position, and during her time as Labor Secretary she stood as an advocate for America’s working class and for the LGBTQ community. She also showed strong support for the disability community, as evidenced by her appointment of Kathy Martinez to serve as Assistant Secretary of the Office of Disability Employment, and the bold policy work done throughout her tenure.

During Solis’ tenure as Secretary of Labor, the Department of Labor’s Office of Disability Employment Policy (ODEP) undertook many initiatives, led by Assistant Secretary Kathy Martinez, to address employment-related issues and disparities faced by disabled Americans. One of the most significant obstacles faced by people with disabilities is unemployment, which is caused and/or exacerbated by discrimination on the part of potential employers, a lack of accessible employment resources, and widespread misconceptions about disabled people.

Under the leadership of Solis and Martinez, the ODEP has developed several priority initiatives to address unemployment in the disability community. These include a concerted effort to increase employment of disabled people within the federal government and by federal contractors, an initiative focusing on disability hiring and small businesses, and outreach efforts to change negative public perceptions of disability. The ODEP also works to increase access to employment-related resources through the Disability Employment Initiative, a grant program that awarded over 43 million dollars to sixteen states to provide training and services to improve the outcomes of disabled individuals who are unemployed, underemployed, and/or receiving Social Security.

Under the Integrated Employment and Employment First initiatives, the ODEP has addressed the employment needs of individuals with the most significant disabilities. “Integrated employment” refers to ensuring that people with profound disabilities are provided the opportunity to seek employment in workplaces where the majority of employees are not persons with disabilities. The Employment First Leadership State Mentor-Protege Program was launched to assist three selected states—Iowa, Tennessee, and Oregon—with developing strategic plans for providing integrated employment as the first option for both youth and adults with significant disabilities. Once the ODEP has learned what works best in these states, the Office will distribute comprehensive information on the most effective practices to help other states implement similar programs.

The Autistic Self Advocacy Network would like to voice our appreciation for Solis’ work in support of the disability community, and to wish her the best of luck in her future endeavors.

News and Advocacy Updates
Wal-Mart Announces Vets Program
Earlier this month, the president and chief executive of Wal-Mart US, William S. Simon, announced an extensive program to hire more than 100,000 veterans over the next 5 years. A representative at Wal-Mart made it clear that the company “wants people in the disability community to know that their recent landmark announcement related to the hiring of veterans, includes veterans dealing with physical or mental post service issues and disabilities.” Furthermore, Wal-Mart is “committed to accommodating those veterans in a way that is consistent with applicable legal requirements in hiring applicants with disabilities.” Wal-Mart committed to hire any honorably discharged veteran within his or her first twelve months off active duty, starting Memorial Day.

Help Empower the Autistic Community in 2013 by Donating Now to ASAN
Help show your support for ASAN and our work by visiting our donor page and offering a donation. There are many different options for giving, so you can be sure to find a way to donate that works within your budget. Thank you so much for support!

Upcoming Webinar on Pathways to Federal Employment
Pathways Programs is offering a free webinar on opportunities with the Federal government, including internships for students and careers for recent graduates. The session will provide a break-down of the process for applying to Federal jobs or internships. The webinar will be held on Wednesday, February 13th, from 4 pm to 5 pm Eastern standard time. Click here to access free registration.

LEAD is Offering a Webinar to Introduce Their Goals and Initiatives
The National Center on Leadership for the Employment and Economic Advancement of People with Disabilities (LEAD) is offering a seminar to introduce their goals and planned activities. LEAD is a new collaborative undertaking between disability, workforce, and economic empowerment organizations dedicated to improving employment and economic advancement opportunities for people with disabilities. LEAD is funded through the Department of Labor’s Office of Disability Employment Policy (ODEP), and led by the National Disability Institute. Registration for their introductory webinar is free and can be accessed here. The webinar will be held on Wednesday, January 30th, at 3 pm Eastern standard time.

ASAN Releases Statement on the Fein Study on Autism and “Recovery”
A recent article in the Journal of Child Psychiatry and Psychology argues that some Autistic children eventually reach what the authors term an “optimal outcome” by moving out of their Autism Spectrum Disorder diagnosis. ASAN Research Committee Chair Steven Kapp has drafted a statement for ASAN addressing the article and its argument. ASAN’s position is that autism is a part of human experience, and that the goal of research and services should be to support the happiness and individual health of all Autistic people. Please take the time to read the complete statement.

APRAIS Drafts Letter Regarding Funding for the Judge Rotenberg Center
The Judge Rotenberg Center has been the rightful target of fierce controversy and advocacy efforts to close the facility because of its rampant use of abusive aversion techniques against people with developmental disabilities. In collaboration with ASAN and numerous other disability advocacy organizations, the Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) has drafted a letter to the Office of Special Education and Rehabilitative Services, and to the Centers for Medicaid and CHIP Services and Medicare and Medicaid Services, calling for the complete cessation of all Federal funding for the Judge Rotenberg Center.

NDLA Drafts Letter to the Vice President’s Task Force on Gun Violence
In collaboration with ASAN and other disability self-advocacy organizations, the National Disability Leadership Alliance (NDLA) has drafted a letter to Vice President Joe Biden’s Task Force on gun violence. The letter applauds the Task Force’s and administration’s efforts to decrease gun violence, and expresses concern about the ways in which people with mental and developmental disabilities have been portrayed in wake of recent tragedies. The letter also cautions against any future measures that may inadvertently contribute to discrimination against people with disabilities, and requests an opportunity for NDLA representatives to meet with the VP Task Force in the course of deliberating on the best policy changes to effectively curb gun violence.

http://autisticadvocacy.org/2013/01/janu…ewsletter/

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DSM Autism Update May Have Little Impact, Study Finds
By Michelle Diament

October 2, 2012

In the largest study yet examining proposed changes to the autism diagnosis, researchers say far fewer people would be cut from the spectrum than previous studies have suggested.

Major changes to the autism diagnosis are expected in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM, slated for publication in May 2013. The proposal has brought widespread concern in the autism community after a study earlier this year suggested that a significant number of people currently diagnosed with autism may not qualify under the new definition

The true test, however, will come when clinicians of varying pedigrees will be left to interpret the changes.

“What they report is impressive in scope and magnitude, but it is using meticulously characterized cases with what are probably very experienced clinicians,” Fred Volkmar, the Yale University researcher who led a similar study earlier this year with different findings, told The New York Times. “The problem is one of moving this to the real world outside of academic centers.”

contributed by: ConLang

Middle School
You told me no,
I told me yes,
You told me I couldn’t,
I thought what if?
You told me to give up,
But I kept going.
The hell I lived in,
The toll I paid
For daring to be different
And not think in your way,
You told me I was different and not ok,
Threw me in a separate classroom like I had no brain,
Had me ride a short bus for hours at a time,
Just to face discrimination where you tore me apart .
The tears were like showers for many of the nights,
Showers I faced under the darkest of light,
Showers of my regrets,
Showers lacking light,
Showers full of pain, needles, and spite.
But I still loved the world,
That threw me to the sharks,
In water’s so cold.
I was just a child then; I had no choice,
To stand up for myself,
Or to put up a fight.
I was only 13,
I cried myself to sleep,
Nobody there,
Not even a peep,
Barely a friend,
No one to teach,
No one to teach me the correct way to speak,
No family that cared as it seemed at the time,
No one to relate to,
So much to despise,
Soaking in my regrets,
In a world so cold,
Alone at night,
My emotions grew old.
There was one person there,
And that person was you,
Abusing me because you saw me as weak,
I was only a child,
But you took that away,
Made me despise myself in many ways,
I spent countless nights,
Starring at a knife,
Dreaming of the day I wouldn’t have to put up a fight,
As a cried myself to sleep for many of the nights,
I couldn’t stop thinking about taking my own life.
The pain I felt,
The horrible feelings,
The way I kept dreaming of the day I stopped breathing,
I was told “no, don’t take your own life”,
“It’s a selfish decision and you should put up despite”,
But they were the one’s who were truly selfish,
Wanting me to go on living in pain,
Dealing with depression in the hardest of ways,
But I overcame those feelings eventually one day,
Years after I graduated High School I dealt with that pain.
There are a few questions that I have for you?
Did you realize my pain?
What’s your excuse?
How could you treat a child like that?
Put him through hell with no one at bat.
But as time passed,
I realized the lies,
That you told a child that ruined his life,
I’m stronger now,
I realize the pain,
That you might be still giving children in equal ways to this day,
So I’m going to make sure people like you,
Stop getting chances to destroy our youth,
Never get to teach,
Never affect lives,
This is one thing that I will always do Because I despise,
The way you affected me,
And told me these lies,
But now I will go on living my life.
But there’s one last thing,
That I have to say to you,
Would it hurt or mend your heart if I told you that I forgive you.

contributed by: Photoguruchris

New project for Autistics around London:

The project will involve working in a group to create a piece of drama or other form of art over a period of 2 months then it will end with a performance and/or exhibition at the beginning of November 2012 (date and location to be confirmed) and the aim of it is to challenge people’s misconceptions about autism.

Most importantly, it will be fun, exciting and needs to have a humorous side to it too!

This is a great opportunity to share your talents, insights, creative ideas and work with a group of autistic people.

First meeting:
Monday, October 22, 2012, 6pm
NAS Ladbroke Grove Autism Centre

“STIM ROCK EXPRESS” IS A NEW WEEKLY DRAMA GROUP FOR INDIVIDUALS ON THE AUTISM SPECTRUM.

This group is part of a community project created by Jay Blue in collaboration with the NAS.

THE AIM OF THE PROJECT IS TO EMPOWER INDIVIDUALS ON THE AUTISM SPECTRUM BY GIVING THEM THE OPPORTUNITY TO PRODUCE A PIECE OF DRAMA (PHASE ONE) and then TO RAISE AWARENESS OF AUTISM BY PERFORMING THE PIECE OF WORK IN FRONT OF PARENTS OF AUTISTIC PEOPLE, PROFESSIONALS WORKING WITH AUTISTIC PEOPLE AND OTHER INDIVIDUALS INTEREST
ED IN AUTISM (PHASE TWO).

THE FIRST MEETING WILL TAKE PLACE ON MONDAY 22ND OCTOBER AT 6PM AT THE NAS CENTRE IN LADBROKE GROVE IN LONDON AND THE GROUP WILL CONTINUE TO RUN AT THE SAME LOCATION EVERY MONDAY.

IF YOU WOULD LIKE TO FIND OUT MORE ABOUT THE PROJECT AND HOW YOU CAN GET INVOLVED, PLEASE COME ALONG TO THE FIRST MEETING!

Here is the schedule for the first meeting :

6pm – ARRIVE AND SOCIALISE (you can bring food with you and eat it before the formal part of the meeting begins)

6.30pm – FORMAL PART OF MEETING BEGINS (this will involve a structured discussion about the aims of the group, sharing ideas for the theme of the performance and most importantly, getting to know other people in the group, including what they wish to contribute to the group and the performance)

8.30pm – END OF MEETING

Is anybody interested in writing posts about the project (this could be information and/or personal experiences related to the project) on the following blog?

http://www.stimrockexpress.org

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