More (ex)employees caught abusing a restrained student, this time beating up and spitting on them. Read more here: http://www.patriotledger.com/news/20170622/state-finds-abuse-seeks-changes-at-judge-rotenberg-center
Considering that fear is considered a “good” reaction by the JRC founder, it seems like a just another aversive method and what we can continue to expect in such an environment even if the FDA does ban the shocks. This approach of looking at everything as “behavior” to be modified invites abuse. It’s very similar to what we learned from the Stanford Prison Experiment.
It’s getting close to “that time” of the year again, this is still excellent.
Your feelings about autism are constructed by living in a world that fears and stigmatizes disabled lives. Your distress about an autism diagnosis are most certainly because of these unhealthy messages. Please remember that your behavior in regards to your child’s diagnosis is a choice. Signing this behavior plan means that you will always put the dignity, autonomy, and love for your child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.
- I promise to never use my child’s most vulnerable moments for sympathy or to “raise awareness”. I recognize that I am my child’s safety net against an often hostile world. When I feel like sharing, I will ask myself if this is something that I would want others to share about…
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Long overdo update and a recap for newer readers on the Judge Rotenberg Center:
Thanks to the Freedom of Information Act, new information has been released by Independent Journalist Evan Anderson. TRIGGER WARNING!
You can check out an overview and the documents HERE: https://medium.com/@tw0headedb0y/abuse-at-the-judge-rotenberg-center-70607f52fbaa#.mt08x1aq4
The FDA is currently proposing a ban and is taking comments for a limited time. The new deadline for comments is 7/25/2016 so make sure to get them in.
The Photo Campaign to Protest the JRC(and promote civil and human rights indirectly): I’ve been to over a dozen comic conventions in the last couple years hoping to find people willing to lend their voices with little to no success save for some very kind-hearted national cosplayers. I wouldn’t approach someone who’s work I haven’t also enjoyed as that would be offensive IMO. Most of the people I tell about it generally feel just as powerless as I do when it comes to spreading the word, which is why I focus on celebrities mostly.
Recently I spoke with Actress Margot Kidder, best known as Lois Lane in the the Superman movies of the 80s. After talking to her for a while(there’s usually not a lot of time to talk) about various issues, she was happy to take a photo with the sign I designed, I posted the photo on Twitter here: https://twitter.com/ChrisStargazer/status/730136862313086976
Though I suspect It’s also partly because she is one of the few people in Hollywood who is also Neurodiverse herself. If the term Neurodiversity is unfamiliar, it’s yet another Human and Civil Rights movement seeking inclusion and de-stigmatization that is mostly lead by but not exclusive to Autistic Adults. Hollywood usually casts people who are not Neurodiverse in Neurodiverse roles, same goes for disability. So there aren’t exactly many celebrities who understand from lived experience.
A big thank you to Margot Kidder!
There are definitely people in support of JRC, who believe this is the only way to help. This will give an impression of what the opposition looks like, if the FDA remarks weren’t enough. https://leftbrainrightbrain.co.uk/2010/03/12/the-boston-globe-defends-the-judge-rotenberg-center/
Ultimately, what is allowed to happen to one of us can happen to any of us. This isn’t a simple matter of one facility, it’s a matter of how easily our human and civil rights can be violated legally simply for being Autistic or otherwise disabled(Guardianship gets assigned to the facility via court).
My rights were violated when I was a child, with severe lasting consequences that almost destroyed my life and also affected my family severely because they tried to fight it and lost. There was no accountability because those doing the violating had legal authority to treat me as disposable. The result was growing up with self hatred, suicidal ideation and a suicide attempt later on because I felt it was my moral responsibility to society for being nothing but a “tragic burden”. Going from self hatred to self acceptance was like waking up from a coma only realize half of my time on this Earth was lost. My story pales in comparison to what is still legal and happens today.
Ultimately, whether you support it, are against it or don’t know. The more people that know about it, the more likely something will finally be done for good or bad.
This United Nations statement from last year is still spot on, that Discrimination of Autistic persons is the Rule, rather than the Exception:
I don’t consider myself a very good activist, but I do want to highlight someone who is. Lydia Brown who is Autistic, LGBTQ and a Person of Color. Lydia was hailed as a 2013 Champion of Change on the White House blog here: https://www.whitehouse.gov/blog/2013/08/15/keeping-promise-ada-unequal-justice-disabled-victims-murder
If you want to see how complicated the controversy gets, check out Lydia’s post on their Unholy Alliance(one of them anyways). http://www.autistichoya.com/2013/11/an-unholy-alliance-autism-speaks-and.html
It doesn’t help when the most successful fund-raising research organization that claims to represent us (mostly parents of children in reality) which certainly has the resources and outreach ability to educate celebrities, politicians and the public; yet they continue to be eerily silent and unresponsive to Autistic Adults’ continued protests of torture and boycotts of their organization despite recent hires.
So you can imagine how not shocked I was when I noticed the founder of that group is voting for the same candidate Gillian Anderson said the Cigarette Smoking Man would vote for, the one who has managed to insult or offend every minority in the country, including the greater disability community. Considering they have tremendous Hollywood support already, I realize my efforts are going to be futile most of the time. Most will assume if it was worthy of concern, the most well known fundraising group would be raising hell. There’s no denying many good people support them.
Personally, I’m not happy with any of the choices this election.
I plan to setup a dedicated section for the photos, I’m mostly focused on moving right now, which was supposed to be done last year. Stopping at another convention on the road.
If things like this were not taking place, I would be a complete recluse staying the heck away from people. I wouldn’t be going to conventions, seeing that most of them do not or are unable to provide basic accommodations to minimize exposure to physically painful stimuli.
Peace and Long Life,
This is such a profoundly important #ActuallyAutistic post. Why it is so important for parents and educators alike to believe in us and ensure we have the opportunity to succeed.
What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who…
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It’s been a while since I posted anything. In a nutshell, things have become increasingly stressful with no end in sight.
When I began my “advocacy” I had no idea it would lead me to lose so much faith in humanity, including in places where I expected more open minds.
Some of the most kind, genuine people I’ve met have demanded conformity from me without even realizing they were doing so, shaming my differences despite their messages of inclusion and diversity.
I’ve come to to the realization that simply finding “good people” isn’t enough. There are plenty, but the vast majority are either silent or fall into the above category, valuing conformity first.
Apparently I exist outside of most people’s comfort zones.
Just got back from another convention, I figure it’s about time for me to assemble something shorter for people to read now that I’ve pitched the idea to quite a few people(should have done it sooner).
I also had my first person pose for a photo with my #CloseTheJRC sign, so I’ll have that up soon. Going to get some sleep first.
Trigger Warnings can be found here
I just finished writing my post regarding the handcuffing of small children in a school recently, as well as mention of JusticeForKayleb. It’s titled “When Disability is Criminalized and Punished. Adult Bullies in our Schools”
I’ve also been meaning to talk about why I’ve been going to comic cons trying to start something similar to the NOH8 campaign.
First I wanted to give an update. The founder of the Judge Rotenberg Center, Mathew Israel, was discovered working illegally in California at “Tobinworld” designing behavioral plans. As some of you know, Tobinworld is what emerged when Mr. Israel was forced to stop his practice in the state of California back in 1982. Tobinworld was started by Julie Weber, who is now Mr. Israel’s spouse. Mr. Israel considered JRC(formerly BRI) to be the unofficial sister facility of Tobinworld. Tobinworld has been suspended while the state is investigating.
I sincerely hope the local United Nations is keeping an eye on this investigation. It wouldn’t be surprising if he’s up to his old tricks before electric shock was added to the mix of abuse. Starvation? Pain? Pinching, Slapping, Restraint, etc?
There was a lawsuit against Tobinworld last year and it has a history of complaints already. http://www.mercurynews.com/my-town/ci_26592515/lawsuit-claims-antiochs-tobinworld-ii-school-employees-improperly
That case was dismissed due to it being “muddled”. The attorney had this to say: “It’s almost terrorism, if you will, because these children are afraid if they tell on one of their authority figures that they will be in trouble the next day,” Tytell said. “A light needs to be shined on this. There are children with no voice in those situations.”
If you’d like to read more in depth history of Tobinworld, check out this post: http://www.specialneedsdigest.com/2015/09/controversial-psychologist-found.html
Since writing my post on JRC last year I have reached out to and/or heard from several survivors as well and others who were there. Nothing really does it justice, seeing the exchanges between former students talking about the same abusive employees.. It’s what you would expect to hear from Prisoners of War. It’s no wonder it’s so hard for students to speak out about, because doing so gives them nightmares for weeks. I really hope Tobinworld isn’t the same kind of hell, because there are 3 Tobinworlds in California.
I also wonder how Disney feels about it’s characters being in places that use what the United Nations considers Torture. It’s hard to imagine they’re not aware, perhaps I should put my rusty CG skills to use to make an offensive animated film about the secret life of Mickey Mouse.
So why have I been going to Comic Cons?
Considering everything that has already been done and the battles that are already being fought in the legal sector, considering I have very little faith in the Justice system, Politicians or the Media. When UN condemnation isn’t enough, or DOJ, ACLU and many disability and human rights groups, protests etc can’t put a stop to it.. Well..
What else is there? What’s missing? Pop Culture for one. I don’t mean the inaccurate portrayals of Autism or Disability in film.
I was inspired by the success of the NOH8 Campaign and how many celebrities supported the movement. I’ve also been glad to see celebrities getting involved with anti-bullying campaigns. So I started reaching out to celebrities, obviously as a fan too.
I know people have very unrealistic expectations of celebrities. During my childhood “hell” I had a negative encounter with one of my “heroes” that taught me to make the distinction between fictional character and real person. However, I hoped that this might be a safer expectation, because the underlying message of NOH8 is one of acceptance of differences, not making people feel like outcasts for being different.
I’ve mainly focused on trying to raise awareness of abuse such as Restraint and Seclusion and places like the Judge Rotenberg Center. Though one of the mistakes I’ve made with the JRC is failing to emphasize that it is not a unique place. JRC is a major eye opener for someone who didn’t realize such abuse was possible today, but it’s not simply the use of electric shock that troubles me so much. It’s the reason why it continues to exist today, because if you take away the electric shock there are more just like it. Some of the recent discoveries of major supporters of the JRC in the treatment industry are disturbing and unethical indeed. The fact that in 2009 Mr. Israel was giving a speech at ABAInternational about the use of skin shock for non-aggressive, non-self injurious “behavior”, etc. ABAI’s long standing association and approval of the JRC was first pointed out to me by fellow blogger Dave Jersey [Source]
I know we(Autistics) want to avoid anything that resembles people speaking about us without us, which is why I didn’t go further than that. I figured standing up against torture and abuse would hopefully suffice. At the very least I hoped to to raise awareness of those issues, but I also hoped it would lead to help with spreading survivor stories; be it from JRC or the documentary on stophurtingkids.com etc. I’ve also been pitching “something similar to the NOH8 campaign”. As in using hashtags on social media, like the once active #CloseTheJRC or even doing a photo with a sign.
Though, a truly fine example of the broader issue is illustrated on this post from AutisticAcademic titled “It’s Amazing you’re here at all”: http://autisticacademic.com/2015/09/19/its-amazing-youre-here-at-all/
There’s also this Whitehouse article featuring Lydia Brown: https://www.whitehouse.gov/blog/2013/08/15/keeping-promise-ada-unequal-justice-disabled-victims-murder
I’ve been to around 11 conventions now, I only started last year. If you read my post above, then you know I’m choosing to “put my hand on the burning stove” metaphorically speaking about sensory issues. I believe it is vital to show up in person because online, you’re simply not going to be validated as human being with conviction. It’s easy to dismiss text on the Internet, many who attempt to speak out are simply ignored.
I’ve had some good experiences and encouraging responses(which I am not at liberty to share for now), but it’s also been one of the most demoralizing experiences of my life. In part due to my own failures to articulate verbally. Especially when you’re trying to break through a tremendous amount of stigma in a very short amount of time. Sometimes the people that hurt you are those with genuine intentions that are just too unfamiliar to realize what they said had a deep impact.
For those that have shared the sentiment of “Different, not less”, I thank you for that. I also want to thank the actress that suggested the book “Mad in America“, it’s on my list now. It’s definitely in the same ballpark, only the practices that used to only be in abusive institutes are making their way into schools and into parental training.
Thank goodness for the success of Steve Silberman’s new book(15 years in the making?) “NeuroTribes“, as it does help to look back at the history of how the stigma started, taking us back to Nazi Germany. But we actually have to go back a little further than that, to the ideologies and pseudoscience that lead up to the Holocaust. I honestly hope the success of his book invalidates any need for what I’m attempting to do. I don’t seek personal validation, nor a reason to make myself feel relevant. What I seek is the validation that Steve Silberman’s book is helping to provide. That recognizes how badly we’ve been stigmatized and discriminated against. The recent Government Accountability Office reports also help shed light on a pattern of research that neglects the needs of the present day.
Ultimately, how society looks at any disability or difference in general needs to change.
So, you’re probably wondering who am I to try to start something like that? The answer is nobody. Who I am is in this blog(which is slowly expanding).
Aside from that, I can tell you about who I used to be, how I grew up thinking of of myself. As a broken, incapable, shameful, unworthy burden with a great deal of self hatred. I had thoughts of death and suicide for years and did attempt suicide once. I was not living for myself, I only chose to live because I knew what it would do it my parents. I was the type of person this post by Lydia Brown is directed at starting with “You are not a burden”. http://themighty.com/2015/08/to-the-autistic-person-who-feels-like-a-burden-for-existing/
Only that post would not have resonated with me. I had intolerance towards anyone who didn’t conform, including others like me and I probably would have hated the idea of something that tried to put things in a positive light. That all stemmed from not being able to accept myself as I am. Once I did, I shed myself of hatred and bigotry. I had been going along with the herd and the bigotry I learned from others.
Obviously I did change, but it was only a few years ago. It was in a very short amount of time and still unexplained for the most part. I will always compare it to waking up from a coma only to realize years of my life were lost. It is a night and day difference, but I am not any less Autistic. I simply believe in myself now. Before the notion of being “cured” wouldn’t have been offensive to me.
I had considered starting my own non-profit, but ultimately I felt that would be a slap in the few groups that are already fighting for our civil and human rights. Why compete for resources? Besides, I know I’m not the ideal person to be doing this, so I hope others will try or keep trying. I have told a few about what I’m up to but overall haven’t been very vocal. My motivation for this is that I don’t want others to end up like I did(or worse), which I know is a motivation many of us share.
I’ve been pushing my limits hard, I’ve gone so far out of my comfort zone I don’t know how to get back to it, nor do I want to get back to it really. I suppose I will have to for sanity’s sake.
I promised another preview of my next major upcoming post. I started it months ago and it was inspired by this statement by the United Nations: http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=15787&LangID=E
I wanted to expand on those statements. That Discrimination is the Rule rather than the Exception, That Autistic people should be considered Autism Experts, That many treatments undermine rights and dignity, that we need to ensure that the practice and science of medicine is never again used to cause the suffering of people.
This means talking about some of the extreme contradictions of Autism Speaks that have contributed to reviving stigma and the division we see today. Asking the question of how they could have become so influential without resolving those contradictions considering the timing.
It means talking about the profound consequences of stigma and seeing yourself as broken. How stigma has encouraged abuse and affects the the type of research(or lack there of) we see today.
It means looking at the industry behind JRC, which is widely accepted and addressing some of it’s scientific deficits and contradictions. Why ruling out what goes on in the behaviorist “black box” is a terrible mistake(Which I’ve already hinted at).
It means talking about what needs to change.
I also have to address the risks involved with fighting the JRC, questioning if something like the NOH8 campaign is even a viable option.
It’s around. 75% done now, however I’m in the middle of a big move and other stresses, so it may take a while. I’ve been meaning to update the blog as well. Too much going on.
There’s many great reviews of Neurotribes to find, so I’ll just share a couple.
A video interview with both Steve Silberman and Temple Grandin: http://meaningoflife.tv/videos/32212
Peace and Long Life.
Great post, and yes. Being indoctrinated by how others treat you at a young age simply for being different. Been there, done that, too many years lost to seeing myself as broken, including a suicide attempt. Never going back to that.
I tell my students I’m autistic.
Usually, I remember to mention it during the first-day introductions, but even when I forget, they tend to figure it out by the third class, if they’re listening to me at all. The use of the first person plural when I talk about autistic writers tends to give it away.
I mentioned my autism to one of my students last week, in a conversation about how I got into disability studies. Student’s reaction: “Wow, so it’s amazing you’re here at all.”
I thought, “Yes, but not for the reasons you think.”
Being autistic, in and of itself, doesn’t make it “amazing” that I’m teaching. That’s unremarkable, really. The professoriate has always had more than its fair share of autistic teachers, I’m guessing, and there would probably be a fair number more of us if alternate communication means and assorted other accommodations were easier…
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