When Help Is Harmful: Autism Speaks and the Judge Rotenberg Center
Living with a disability is not easy. Whether it's a prominent physical disability that requires mobility aid or even an invisible disability that is often overlooked, many of us require assistance or accommodation to get by.
The world is often not built with our needs in mind, although in recent decades this is starting to change.
Some public spaces are beginning to take some issues into account, such as audio tones at cross walks or braille on signs for the blind. There are wheelchair ramps built into staircases and on the side of most public transit busses. It's a good start, but not really enough to cover everyone.
For those of us who have a disability that isn't obvious at a glance, it's often assumed that we're functioning perfectly fine on our own. As a result, there are a lot of daily tasks that wind up being more difficult for us.
Autistic people like myself may or may not be visibly recognizable as having a disability, but that doesn't mean we're not struggling.
For example, my brain can't really process a lot of sensory input all at once- the loud noises, bright lights, colorful packaging and frenetic busy energy of a grocery store is physically painful and disorienting for me.
A few grocery chains take neurodivergence into account, but they're extremely rare. People like me are left trying to find alternatives, and most of us just order groceries online to avoid the potential agony.
Unfortunately, that comes with added charges for delivery. Our disabilities cost us money.
In light of all this, it's not uncommon for families with disabled children and young adults to reach out to specialized organizations for help. Usually, that's a great option if you can swing it.
Other times, you might wind up in serious trouble. It's an awful fact of life that not all charities and organizations are benevolent.
Imagine reaching out to an organization to find help for your autistic child, expecting them to be compassionate and caring and full of people looking to give your kid the best life they can have.
And instead, they start commiserating with you about how difficult your child makes your life and how being a caretaker is so hard.
It turns out only a tiny percentage of their budget actually goes towards offering families with assistance, and the organization actually funds programs intent on 'curing' autism via eugenics research instead.
Does this sound like a nightmare? I'm sure it does. It's also real. The organization is called Autism Speaks, and while it is gradually improving, the history behind it is awful.
Take a look at this ad, and understand that this is how they've historically framed the 'problem' of autistic children existing.
Autistic people are not fully formed, intelligent human beings. We're just empty vessels, objects that exist to cause difficulty for others. A burden.
They talk about autism spectrum disorder as if it's a form of cancer, coming to destroy your life and ruin your whole world. It terms life with an autistic child as a constant stream of humiliation and pain, certain to ruin your marriage and your happiness.
To make matters worse, Autism Speaks did not have any autistic people on staff at the time this ad was released- at least as far as my research has found. It was all neurotypical people, making judgement on our lives from the outside looking in.
Over the past few years, Autism Speaks has been working to address these issues. They've hired autistic people, they've pivoted to trying to provide more assistance and raise awareness, and they've stopped producing ads like the one above.
And yes, I said 'ads', as in plural. There's another infamous commercial where they interview a mother who describes how she contemplated murder-suicide by driving off of a bridge with her daughter in her car seat. The child was sitting right there listening to what her mom was saying to the camera.
While the organization seems to be working to get better, it isn't perfect and its previous work and attitude is impossible to forget for those of us in the community.
The history of fearmongering and catastrophizing about a lifelong disorder is problematic to say the least, and it leaves autistic people like myself feeling decidedly 'less than'.
We're born autistic, and we've never been anything else. It's simply part of who we are and how we live. Acting like it's a horrible, life-ending disease that ruins entire families is like blaming us for being born.
It's blatant Othering.
All of that is pretty bad, but it's not the worst offender. At least they aren't actively, physically abusing disabled children and adults under the pretense of teaching them life skills- they only promote the services of the people who do!
That's the purview of the Judge Rotenberg Center, based in Canton Massachusetts.
The JRC is an institution that relies on aversive 'therapy' to basically train disabled youths out of what it considers to be bad behavior. Kid flaps his hands too much? He's not allowed to eat for the day, or maybe he's hit with an electric shock so severe he develops a burn.
I'm not joking. The students living at the JRC are hooked up to devices they affectionately term GEDs. That stands for Graduated Electronic Decelerator.
The way the center describes the use of this device, you'd think it was perfectly safe and even beneficial. Look at the resource page on their own website, as an example.
The purple section is particularly dystopian, to my mind. While you're reading, keep in mind that they're describing the use of targeted electric shocks to cause pain to a 16-year-old girl.
The description of the example child's behavior is also ludicrously extreme. People do not behave that way without an underlying reason, whether it be physical or mental or trauma-related.
It seems to me that it would be better to diagnose and treat the underlying issue, rather than resort to torturing a child into submission.
Also, keep in mind that the JRC is the only accredited clinic making use of such a device. Other centers that specialized in behavioral therapy like this do not torture their students to get results.
And I'm being very literal about the 'torture' part. They've been investigated and condemned by the United Nations.
In spite of what they describe on the website, survivors of the JRC have described a much different state of affairs. They describe pain, humiliation, and degradation. They describe the reasons they were shocked; in one case, the behavior that allegedly earned one student 31 shocks while strapped to a board was 'tensing up his body.'
That's a far cry from violent, abusive assaults and self-harm.
What we see in the case of these two organizations, both Autism Speaks and the JRC, is a common form of prejudice against disabled people.
We're less than human. We're just a burden on society, and don't deserve the dignity and respect owed to 'normal' people. We can be tortured, mentally and physically, and it's not a big deal. Put shock collars on us and train us like abused dogs; why not? What are we going to do about it?
Neither of these organizations deserve your support, and they certainly should not be the ones you reach out to for assistance. Not as adults, and not as family members of autistic or otherwise disabled youths.
We deserve much better than that.
There's a very common slogan that the disabled community uses for protest and advocacy: Nothing About Us, Without Us. This slogan came into use by disabled people because we are tired of having policies and rules and treatments created without our input.
Imagine if the person who founded Autism Speaks were autistic. Do you think they'd be fearmongering that way? If the people running the Judge Rotenberg Center were disabled, do you think they'd have staff shocking children for fun?
Would disability benefits be so difficult to obtain and keep, and have such strict rules that disabled people can't even get married for fear of losing their benefits- would that be the case if the people who wrote the laws were disabled?
No, I highly doubt it.
If you want to support organizations that actually help, that know what they're talking about and actually include the voices of the marginalized in their decision-making, there are better options.
Organizations like the Autistic Self Advocacy Network, or the International Disability Alliance that works with the United Nations on a global scale. These organizations actually advocate for our rights, rather than behaving as though we don't have any.
Regardless, it pays to vet and research the organizations you plan to work with before committing to them, either for donation, volunteering or to seek help for yourself.
It's a sad fact of life that some charities and organizations do more harm than good.
Solidarity wins.
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