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Dear Elisabeth, Who Thinks That All Autistic People Should Be Locked Up
Dec 19th, 2012 by Rachel Cohen-Rottenberg

I saw your post making the rounds of Facebook today. I’m sure you know the one I mean. It’s the one in which you refer to autistic people as “monsters” who “need to be locked up… ALL OF THEM.”

Elisabeth

 

 

 

 

 

 

 

 

 

 

 

 

I realize that you’re scared. I realize that we live in a country in which 20 little children were just murdered while sitting in their classrooms. I realize that you want to somehow solve it, that you want to somehow feel safe, that you want to somehow cast this evil out of our midst.

I understand how you feel. I feel scared, too. I want to solve it, and I want to feel safe, and I want to cast this evil out of our midst so that no one ever has to bury a loved one again after such a horror.

But calling for all to be punished for the evil done by one person — that is its own violence.

It is prejudice. To decide that, because one member of a group did a despicable thing, all members of that group are suspect is the very definition of prejudice.

It is scapegoating. The person who did that despicable act didn’t do it because he was autistic. I don’t know why he did it, but autism wasn’t the cause.

It is verbal violence. It engenders hatred. It has the potential to put innocent people at risk. I have friends who are fearful for their safety right now. I know parents who are afraid for the safety of their children right now. Innocent people. Good people.

People like me.

I am on the autism spectrum. Let me show you who I am.

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This is a picture of me with my husband Bob. It was taken at my kid’s high school graduation in 2011. I look distinctly like a full-fledged human being, don’t I?

That’s because I am. I’m a human being with a husband and a kid who love me, and who rely on me, and who can’t imagine their lives without me.

I’m a human being with friends both near and far.

I’m a human being who loves to write and to think and to create things of beauty.

I’m a human being who becomes upset at injustice, and who sometimes can’t sleep at night because she feels the suffering of other human beings so deeply.

I’m a human being who walks into any situation just wanting to help and to extend a kindness.

I’m a human being whom other human beings implicitly trust, because they know that I would never use anything they tell me against them, and that I would never break a confidence, and that I would never willingly hurt a living soul.

That is who I am.

Autism doesn’t make monsters. The monster is the fear that evil creates.

Don’t let the evil win. Don’t let it make you see monsters in the place that human beings are standing. Because if you do, evil wins. And after the events of last Friday, none of us wants to see that happen.

© 2012 by Rachel Cohen-Rottenberg

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On the Ethics and Implications of Outing a Child in the Media: The I Am Adam Lanza’s Mother Debacle
Dec 18th, 2012 by Rachel Cohen-Rottenberg

I don’t think I’ve ever been as troubled by a piece of online writing as I’ve been by the now infamous I Am Adam Lanza’s Mother piece. After fielding the steady flow of comments from my last article in response to it, I’ve learned a great deal about how people are thinking about issues like privacy and safety, and it’s becoming clear to me why the quality of the national conversation about violence and mental health (including the spurious belief that violent people are always mentally ill) is so off base.

The news isn’t good. Two major things stand out for me:

1) In the minds of a great many people, children do not seem to exist as whole human beings with interior lives. This is especially the case for mentally ill or otherwise disabled children.

2) Fear is leading the way, and when people are afraid, they become illogical and cannot stay on point.

I think that these two things account for some of the truly illogical backflips I’ve seen people doing in order to rationalize the fact that the mother of an emotionally fragile child thought it was perfectly all right to talk about him in the media in the way that she did, at the precise moment when people were so traumatized that they were highly unlikely to respond with very much rationality or thoughtfulness at all.

When people are running scared, it’s probably not the best time to compare your kid to a school shooter. This fact seems to have been lost on a great many people. In fact, a great many people seem to feel that it was the perfect time.

Here are some of the basic themes that emerged yesterday. I have seen them emerge on a number of other sites. I let through some of the comments that expressed these sentiments and I responded to them directly yesterday. Others, I did not let through, because the content was so disturbing that I had to hold them back until I could speak to them separately and at some length.

1. How dare you criticize this mother?

That was a constant refrain. People said they were appalled. They told me that I was being mean and that I ought to be ashamed of myself.

And the whole time, I’m thinking to myself, “How is criticizing a mother for publicly comparing her minor child to the most hated person in America somehow more appalling than the fact that she publicly compared her minor child to the most hated person in America?” At this point, I’m hearing far more anger directed at people who criticize this choice than at the person who actually made this choice.

2. The public safety is more important than a child’s privacy.

There are people who said that it was perfectly all right to publish a child’s photograph next to the words I Am Adam Lanza’s Mother because, they opined, we need to know who these people are.  Yes. I got comments like that. I imagine that these are the same people who think that a woman wearing a hijab and carrying the Q’uran shouldn’t be allowed on an airplane.

Look, we’re talking about a 13-year-old kid who is seriously acting out inside his own family — a family that has been through a bitter divorce and custody battle. And now, in the national mind, he’s potentially the next school shooter from whom society needs protecting. On what are people basing their image of this young man? A blog post. One blog post. They read it on HuffPo, and now they feel perfectly qualified to make a judgment about someone they’ve never met.

I realize that people are raw and afraid after the shootings last Friday. But how does a mother talking about her kid, someone whom none of us has ever met, make anyone feel safer, hundreds of miles away?

Or would you like every mother of a troubled child to post her child’s picture on the Internet next to a title that reads I Am Adam Lanza’s Mother? How about we put the photographs on milk cartons? I’m sure it would be a great boon to the mental health of these kids. Public shaming always works to calm emotionally dysregulated people right down.

And besides, we’ll have created a whole new subclass of human beings to fear. We’re awfully good at that in America. We generate them like cars off an assembly line. It’s a sign of our abundantly good mental health. So far, we’ve got LGBT people, autistics, black men, people with mental illness, Muslims, genderqueer people, and vaccine manufacturers to fear. Hey, what’s one more?

3. Privacy is just an abstraction.

No, privacy isn’t just an abstraction, nor is the impact of having a mother go on the Internet and talk about how her child might grow up to be a mass murderer an abstraction. The impact is stigmatizing and very likely humiliating.

People are human beings, who have these things called emotions, and it tends to wreak havoc with their emotions when they don’t feel that they have the same right to privacy as putatively “normal” people.

4. It’s too bad she had to potentially compromise the mental health of her child by going public, but it’s important that we have this conversation, and you’re distracting us from it.

If the only way we can have a national conversation about mental health is by saying these things publicly about a 13-year-old child, we need to be looking at our own mental health as a country. We need to figure out why we think that’s healthy, why we rationalize it, and why we think that a child’s reputation and sense of safety are potentially expendable as long as the adults get to have their conversation. And we also need to look at our national ethics and think about why a mother outing a 13-year-old kid barely registers on most people’s moral compasses.

5. The mother was just trying to get help for her child.

This is not a reality show. This is real life. In real life, people don’t just show up and say, “Hey, great blog post. I’m here to fix all your problems.”

What does this say about us as a country, and about our clarity of thought, that we think these kinds of things will work? And why do we conveniently forget that the media, in its shameless opportunism, is exploiting both a national tragedy and the pain of this woman’s family for page views and advertising dollars? This is the same media that, in the past week, has engaged in the following activities:

a) Interviewed children from Sandy Hook Elementary School the day their schoolmates were killed.

b) Incorrectly reported that the shooter’s brother was the murderer, resulting in the shooter’s brother being publicly reviled while he was in a state of shock and grief over the loss of his mother and the actions of his brother.

c) Propagated a false and dangerous equation between Asperger’s and violence — with the result that, in just my small circle of friends, at least two have gotten phone calls from relatives asking whether their little autistic kids are going to grow up to be school shooters. One can only imagine the verbal abuse and bullying of autistic children going on in the schools this week. A number of my adult friends are living in fear.

How does any of that hold the promise of a solution to anyone’s problems? How is that a safe or productive environment in which to publicize your child’s issues?

6. What would you prefer? That the woman suffer in silence?

It’s not a choice between suffering in silence and stigmatizing a child in the national media. If people can’t find any territory between those two extremes, they need to do some serious self-reflection.

7. It’s important to talk about these things openly in order to break the stigma of mental illness.

Yes, it’s important to talk about these things openly in the proper context. The day after one of the worst school shootings in American history is not the day to announce to the world that you think your kid is going to grow up and do the same thing. That does not destigmatize mental illness. Not in any way, shape, or form. When people are reeling in pain, grief, fear, and shock, for a person to publicly announce I think my mentally ill kid could do the same thing someday does not destigmatize anything. It engenders fear of mentally ill people, and the likely result is that mentally ill people will not seek help because they do not want to end up being stigmatized as the next school shooter.

How people could miss the point so spectacularly is really beyond me.

8. You have no idea how people feel in these situations.

Maybe not. Could someone express concern for the child now?

9. The mother was just crying out for help.

Perhaps she was. Could someone express concern for the child now?

10. This isn’t about the child.

Yes, it is. It absolutely is. Could someone express concern for the child now?

Please?

Source

The Huffington Post. “‘I Am Adam Lanza’s Mother’: A Mom’s Perspective On The Mental Illness Conversation In America.” http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html. December 16, 2012. Accessed December 16, 2012.

© 2012 by Rachel Cohen-Rottenberg

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No, You Are Not Adam Lanza’s Mother and Yes, Your Kid’s Privacy Matters
Dec 16th, 2012 by Rachel Cohen-Rottenberg

Yesterday, I came across the article I Am Adam Lanza’s Mother, an article that has gone viral over the past 24 hours.

The article was written by a woman with a brilliant but violent 13-year-old son — a child who has clearly been failed by the mental health system. The article first appeared on her blog anonymously, but when it was picked up by the Huffington Post, Gawker, the Washington Post, NBC’s TODAY Moms, and other outlets, it appeared with her name, the area she lives in, and in a number of cases, a photograph of her son. She used a pseudonym for her son’s name, but not for her own. In other words, anyone who knows who she is will know who she’s talking about.

Why does it matter? Because in the article, she says the following:

“I am sharing this story because I am Adam Lanza’s mother. I am Dylan Klebold’s and Eric Harris’s mother. I am James Holmes’s mother. I am Jared Loughner’s mother. I am Seung-Hui Cho’s mother.”

That’s right. She is comparing her child to mass murderers. In public. Under her own name. On the Internet. For the world to see.

Her 13-year-old son.

I’m not even going to speak to the issues that the article raises about the mental health system. I can’t even get that far because I’m so appalled that any mother, a day after 20 children are killed, would use her own name to write about her 13-year-old son and suggest that her son is like the person who killed them. There isn’t any moment when it’s appropriate to compromise a child’s privacy in that way. But when people are raw, and hurting, and scared, that’s a moment when it ought to be perfectly obvious that you don’t do it.

I’m even more appalled that so very few adults seem to care about the potential impact on her son. She is either getting kudos all around for being so brave, so honest, so real, or she is being called out for being retrograde in her attitudes about mental illness and violence. But very few have commented about the effect on her son. It’s as though they’ve written him off. He’s just a talking point. A springboard for discussion. An avatar of people’s worst fears.

But not a child struggling.

He will know about his mother’s post. So will everyone who knows his mother: his teachers, his schoolmates, his friends, his neighbors, his community members. So will millions of strangers. How exactly does this article enhance her son’s functioning? His mental state? His sense of safety? His ability to navigate the world?

It pains me to imagine how he must feel right now to have his private conversations and actions broadcast on the Internet for all to see. It pains me to imagine how he must feel to read some of the horrendous things that people are saying about him.

And yes, his feelings matter. His feelings matter quite a lot. Because he is a child who needs help, and for that help to matter, he has to feel safe, and he has to feel respected, and he has to feel that his private life has boundaries around it.

The words are out there now. They can’t be taken back. They will hang over him like a shadow.

I can understand the exhaustion and the helplessness that his mother feels; I can even understand harboring fear for the future in her own heart. Fear is fear; it can’t be argued with. But if you’re going to write about something so personal, so wrenching, so frightening, so painful that involves your minor child, common sense dictates that you use pseudonyms — not just for the child, but for yourself and for everyone else concerned. And for the love of God, you do not use a photo.

I’m speaking here as a mother. I am fierce about protecting my kid’s privacy. I don’t post anything that has my kid’s name in it without getting my kid’s approval, and if that approval doesn’t come, the post doesn’t go up.

I’ve been bothered for a long time about the extent to which people talk about their children without protecting their anonymity. I write under my own name, because I’m an adult and I make a conscious decision to share information about my life. I don’t share everything; I share what I’m comfortable sharing. But I would not make that decision for my kid. Not now. And not ever.

So many people seem to have lost all sense of privacy and common sense. I don’t know why that is. But I do know that a conversation about mental health, or a blog piece about the pain and suffering in one’s life, should never come at the expense of a child’s privacy. I don’t care who the child is and I don’t care what the child has done.

We’re adults. That’s our responsibility. We should know better.

Source

The Huffington Post. “‘I Am Adam Lanza’s Mother’: A Mom’s Perspective On The Mental Illness Conversation In America.” http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html. December 16, 2012. Accessed December 16, 2012.

© 2012 by Rachel Cohen-Rottenberg

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When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat
Dec 15th, 2012 by Rachel Cohen-Rottenberg

Yesterday morning in Newtown, Connecticut, a young man murdered 20 children at the Sandy Hook Elementary School, along with six adults, having already killed his own mother. When I saw the news, I broke down and cried. All I could say, over and over, was Why would anyone kill little children? How could anyone do such evil?

Yes, I’m using the word evil. I can’t think of any word that even comes close to describing the actions of someone who is so angry, so desperate, and so full of self-pity that he decides to take 20 children with him. And really, there is no answer to the question of why. Sometimes, people do evil because they can, because they decide to discard their moral compass, because they decide to inflict pain.

But of course, we live in a society in which simply saying that evil is afoot doesn’t cut it anymore. We want answers. We want control. We want it fixed. So we make it a sickness, because we hope that someday sickness will have a cure.

And so we find scapegoats. When another atrocity happens, we hear people say that the shooter must have been mentally ill. We hear people say that the shooter must have had autism. In this case, the media is engaging in scapegoating both groups: more than one news outlet has reported that the shooter was both mentally ill and autistic, as though being mentally ill and autistic were an explanation for killing 27 people.

Yes, it’s happening again. It’s becoming predictable. In the past 24 hours, I have been involved in discussions in which people have not only engaged in the usual He must have been mentally ill speculations, but have also said that because autistic people have meltdowns, it’s plausible that the shooter simply had a meltdown.

Let’s get something straight right now. Autistic people have meltdowns because their sensory systems get overloaded and it hurts more than anyone who has never experienced it could understand. And yes, sometimes, people strike out in the course of a meltdown. Not always, but sometimes. Often, they strike out at themselves. And when they do strike out, it’s a spontaneous act. It’s a neurological response that is not even remotely close to premeditating a murder.

People in the midst of a meltdown do not take the time and the forethought to arm themselves with a bullet-proof vest and several weapons, make their way to an elementary school, and consciously target two particular classrooms of children and the school office. In fact, most people in the midst of a meltdown just want to withdraw and get away from people and the stressors that cause overload.

I’ve said it before and I’ll say it again: Autism is not a predisposing factor to premeditated violence. Autistic people are far, far more likely to be the victims of crime than its perpetrators.

And the same goes for mental illness. Most mentally ill people do not harm anyone and are at much greater risk of being the victims of violence.

If you must ask the question of why, take a look at what all the school shooters have in common: they are young men. Of course, simply being a man does not predispose anyone to violence. But perhaps the fact that we equate manhood with power and domination in our society does. Maybe, just maybe, we need to separate violence from the definition of being a man. Maybe, just maybe, we need to start looking at the way that we glorify violence among men.

That’s not scapegoating. That’s taking a good look at we do, as a culture, to make it more likely that people choose evil.

Scapegoating innocent, vulnerable groups of disabled people — people with autism, people with mental illness — is irresponsible. It has the potential to wreak havoc in the lives of people who are already struggling against stigma and exclusion.

So let’s do some self-reflection as a culture. Let’s look at what we’re communicating to our young men about what it means to be a man.

And when we do, let’s leave disabled people out of it.

© 2012 by Rachel Cohen-Rottenberg

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Words Flow From My Fingers: In Defense of Social Media
Dec 9th, 2012 by Rachel Cohen-Rottenberg

[S]poken language is privileged over textual language. This privileging of one sense over another is not natural, as Rousseau argued, but arbitrary. — Lennard Davis, Enforcing Normalcy: Disability, Deafness, and the Body, page 67

I’ve recently been reading Lennard Davis’ Enforcing Normalcy, and I’ve been thinking a great deal about what he has to say about the privileging of speech in our culture. The bias toward speech is nowhere more apparent than in the doomsday predictions that people engage in regarding the impact of text-based social media. It seems that you can’t pick up a newspaper or, ironically enough, read articles on the Internet, without hearing someone bemoaning the rise of social media and its allegedly destructive impact on human interaction, conversation, and civilization itself.

Sherry Turkle’s New York Times piece, The Flight from Conversation, is representative. Ms. Turkle writes that we have substituted “connection” for “conversation,” and that our online communication is a mere shadow of real human interaction:

FACE-TO-FACE conversation unfolds slowly. It teaches patience. When we communicate on our digital devices, we learn different habits. As we ramp up the volume and velocity of online connections, we start to expect faster answers. To get these, we ask one another simpler questions; we dumb down our communications, even on the most important matters…

And we use conversation with others to learn to converse with ourselves. So our flight from conversation can mean diminished chances to learn skills of self-reflection. These days, social media continually asks us what’s “on our mind,” but we have little motivation to say something truly self-reflective. Self-reflection in conversation requires trust. It’s hard to do anything with 3,000 Facebook friends except connect.

As we get used to being shortchanged on conversation and to getting by with less, we seem almost willing to dispense with people altogether. (Turkle 2012)

I find these paragraphs absolutely fascinating in their alarmism. False assumptions abound: that one cannot have a text-based conversation that “unfolds slowly;” that text-based media causes us to “dumb down our communications”; that text-based media makes us less self-reflective; that one cannot build trust with people unless one speaks to them face to face; and that social media causes its users to become narcissists who wish to “dispense with people altogether.”

I will certainly grant that there are people who use social media in lightning-fast ways that don’t allow for nuanced conversation, that run rampant over self-reflection, and that erode trust. All one has to do is glance at the comment thread of any major news story and it becomes quite apparent that the Internet gives anyone the ability to say just about anything in as offensive a way as possible. But to say that textual media itself creates this kind of dumbed-down, offensive speech is to get the causation wrong. People have always said highly offensive things to and about one another, but now that anyone with an Internet connection can make it public (and create a permanent record of it), we think it’s a new phenomenon. I’ve been absolutely shocked by the level of racism, misogyny, and anti-Semitism I’ve seen on the comment threads of major news sites, but I shouldn’t be. They have always been present in our society. Before the advent of the Internet, I just couldn’t hear someone in another state say something abhorrent because I wasn’t face-to-face with him.

It’s not the medium that creates the shallowness, the bigotry, and the ignorance. The medium just makes them more apparent. And yes, that’s depressing, but it’s not a sign that the world is in more of a mess today than it was yesterday.

Of course, if one looks past the cesspool of the comment threads of major news sites, one can find a plethora of very nuanced, very sensitive, and very supportive conversations that happen online. In fact, a number of people find substantive conversations through email and social media welcome and meaningful because these kinds of conversations simply aren’t available to them in their everyday lives. Many people find themselves isolated in their local communities: LGBT people, genderqueer people, disabled people, parents of disabled kids. In many places, there simply isn’t much support on the local level for people in minority communities, particularly if you live outside the major cities.

Social media serves to erode this isolation. In fact, it can have an empowering impact on people’s lives. I live in a small town in rural Vermont. I don’t know many disabled people locally, because the place I live is so sparsely populated. For disabled people, finding disabled peers is crucial, just as for people in any other minority, because we share common experiences, common perspectives, and common concerns. We see similar injustices and we experience similar levels of outrage about them. We get sensitivity and understanding from one another regarding verbal and physical pacing, the content and amount of speech to use, the kinds of barriers we find in public spaces — sensitivity and understanding that are often absent in our experiences of our nondisabled peers.

In my small town, I know half a dozen disabled people, and I value their friendship immensely. But if I weren’t connected with the larger disability community online, I would not feel the sense of belonging in the world that I do. I would not have learned so much about the political and social nature of disability, and I would not have gained so much insight about how to adapt to disability, about how to be proud, about how to advocate for myself, and about how much support I can give and receive. When I’m struggling with an issue, I can post a Facebook status and have a thorough-going, nuanced, supportive conversation. I can email an online friend and gain perspective that might elude me with an able-bodied person who does not share my experience. I can have conversations that go on for days, in which each party takes plenty of time to reflect in silence and to craft a response that speaks to the heart of what is going on.

One of the most painful things to me about the privileging of verbal communication is that verbal speech is not my native language. Because I come across as being an articulate person, most people do not realize how much of an effort it is for me to speak. I have to gather almost all of my energies to do it, and I need a great deal of time to recharge afterward. Speech is my second language; I will never feel completely at ease in it.

My first language is text. At three years of age, I had only been speaking for six months, but I could read anything. I don’t remember ever learning to read. My mother told me that I saw her reading one day and asked her what she was doing; she explained to me that each letter had a sound and that the sounds made words. From that point on, I learned to read like other children learn to speak — not with rote lessons and phonics exercises and vocabulary lists, but intuitively. I knew what the words meant; I knew their relationship to the words I could hear; I knew how to put them together and roll them around in my head and see the sentences take shape in my mind’s eye.

Words flow from my fingers the way that speech flows from the lips of speaking people, the way that words flow from the hands of Deaf people, the way that rhythm flows from the hands of a drummer.

And yet, the mode of communication in which I am most effective is seen as a threat to human interaction and mutual care. Such concerns are not new. As Lennard Davis points out, the eighteenth century saw the rise of solitary reading as a leisure time activity and the diminution of public performance as a  communal past-time. Davis writes about the rise of textual media in a way that resonates into the electronic age:

Writing and reading became the dominant forms of using sign language, the language of printed signs, and thus hearing readers and deaf readers could merge as those who see the voice of the words….The very nature of political assent, through the silent decoding of reading, became a newly ‘deafened’ process that did not require adherents to gather in a public place, that did not rely on a vocal response to a rallying cry. (Davis 1995, 62)

Much like today’s social media platforms, which allow people separated geographically to unite in political causes and find like-minded souls, reading in the eighteenth century enabled people to gather together with fellow feeling in the privacy of their own living rooms. Over two hundred years ago, the response to this shift was a “fascination with conversation” that was, in fact, “a kind of cultural nostalgia for a form that was in the process of becoming anachronistic” (Davis 1995, 63). The parallels with Sherry Turkle’s encomium on verbal conversation could not be clearer.

Those who privilege spoken language do not recognize its limits, nor do they see the potential for human belonging that social media provides. Last year, I found the following moving words in a comment on my Journeys with Autism blog from someone who called himself invisible:

I can’t believe the tears I’ve shed today….

I recently lost my dearest and best friend. Each of us found a connection that we had never had with another person. We instinctively understood and accepted each other. I’m in my late forties. I never felt like I was a part of the rest of the world, I thought that’s how everyone felt. I just accepted that nobody would understand me, that nobody would ever see the real me. That is, until he came along…

I read a few things that you wrote, and it was like I was reading my own thoughts… I just keep crying. Are there really other people like me? Is this possible? (Journeys with Autism, February 2, 2011)

This man had felt so alone in his life that he believed that only one other person could see him and understand him, and he was in despair because he had lost that person. And then he read the words on my blog, and he wept for joy that there were others who felt as he did — not just me, but so many of my readers.

For many, many people in this world, being seen and being understood is a rare occurrence in their local communities. The Internet and the social media it makes possible bring people together, from all over the world, who have felt isolated in the places they live. The friendships that I have made online are just as real, just as loyal, and just as profound as those I have made face to face. And when I do meet up with my online friends face to face, we talk as though we’ve known one another for years.

Because, in fact, we have.

References

Davis, Lennard J. Enforcing Normalcy: Disability, Deafness, and the Body. London, England: Verso, 1995.

Journeys with Autism. “On My Solitary Way.” http://www.journeyswithautism.com/2011/02/02/on-my-solitary-way/. February 2, 2011. Accessed December 9, 2012.

Turkle, Sherry. “The Flight From Conversation.” The New York Times, April 21, 2012. Accessed December 9, 2012. http://www.nytimes.com/2012/04/22/opinion/sunday/the-flight-from-conversation.html.

© 2012 by Rachel Cohen-Rottenberg

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Studies Prove It: Autism is Linked to Being a Carbon-Based Life Form
Nov 29th, 2012 by Rachel Cohen-Rottenberg

I’ve started compiling a list of all of the studies that link autism to… well, everything. I tend to find most of these studies unconvincing, to put it mildly, and when I look at them in list form, I have to remind myself that I’m not looking at works of satire. In fact, I have to remember that, at this absurd historical moment, a bunch of people actually get money for doing this kind of research, and that they are not embarrassed to associate their names with it.

Maybe it’s just me, but when I look over this list, all I can see is a whole lot of researchers jumping on the gravy train that is my neurology. Not that I’m insulted. In fact, I’m deeply honored that my neurology is a source of income for so many. After all, I wouldn’t want to see autism researchers lacking for food, shelter, and social status.

So carry on, people. Of course, at some point, you might consider making a living researching the sorts of things that would actually help people such as myself. Because, you see, when you reach my age, it just plain doesn’t matter whether you have autism because your mother sucked too many exhaust fumes when she was pregnant, or let you sit too close to the color TV, or was stressed out and depressed while you were in utero, or was abducted by little green men from Mars. (No, there hasn’t been a study linking autism to alien abductions. Yet.)

So if you all could do some studies on why typical folk have such a hard time providing access and employment to disabled people, or why they think you’re lying about your disability because you look perfectly normal, or why they won’t slow down for 10 seconds to talk to a person with a different communication profile, I’d be ever so grateful. These are the questions that plague me. Where autism comes from? Not so much.

Here is the list. I will be updating it for some time, apparently.

13 things ‘linked’ to autism
Age of mother affects child’s autism risk

Ambient Air Pollution and Autism in Los Angeles County, California
Amino-Acid Deficiency Found to Underlie Rare Form of Autism
An Immune Disorder at the Root of Autism
Autism and baby size linked
Autism and early exposure to traffic pollution linked
Autism And Pollution Study Links Autism With Prenatal Exposure To Traffic Pollution
Autism, asthma, inflammation, and the hygiene hypothesis
Autism Caused by Depression of Mothers?
Autism linked to difficult birth
Autism linked to gut bacteria, study finds
Autism Linked To Industrial Food Or Environment
Autism Linked To Moms’ Antidepressant Use
Autism Researchers Discover ‘Epigenetic’ Changes
Autism risk may be revealed in babies’ cries
AUTISM: Does head size provide the clue?
Birth Complications and Autism
Can Cell Phones Cause Autism?
Can low cholesterol cause autism?
Can We Blame Rain for the Autistic Brain?
Chemicals found in plastics linked to Autism
Children conceived in winter have a greater risk of autism, study finds
Children with autism have distinct facial features
Clinical research: Twin study links low birth weight to autism
Does Pet Shampoo Cause Autism? Let’s Hope Not…
Excessive Protein Synthesis Linked To Autistic-Like Behaviors
Extremely premature infants more likely to test positive for autism
Father’s Age Is Linked to Risk of Autism and Schizophrenia
Finger length related to autism!
Flu, fever linked with autism in pregnancy study
Head Size Tied to Regressive Autism in Boys
High Birth Weight in Children with ASD and Their Unaffected Siblings
Is Autism a Prenatal Parasite-Deficiency Syndrome?
Is Autism Statistically Linked to Early Non-Maternal Child Care?
Is excess folic acid supplementation a risk factor for autism?
IVF Linked to Autism, Israeli Study Suggests
Large study finds ‘baby sibs’ at high risk of autism
Later-born children at higher risk for autism
Link Found Between Child Prodigies and Autism
Living Near a Highway May Contribute to Autism Risk
Magnesium Deficiency and Autism
Major Stress During Pregnancy Linked To Autism
MAO-A Theory of Autism
Medical journal: Study linking autism, vaccines is ‘elaborate fraud’
Men who don’t find curvy women attractive ‘could father children with autism’
Mom’s Obesity, Diabetes Linked with Autism and Developmental Delays
Neuroscientist Links Autism with Internet Use
New Evidence Links Immune Irregularities to Autism, Mouse Study Suggests
New Study Implicates Environmental Factors in Autism
Newborn blood may reveal early immune signs of autism
NIH-funded Study Shows Pre-birth Brain Growth Problems Linked to Autism
Perinatal Risk Factors for Infantile Autism
Refrigerator Mothers
Researcher sees link between vitamin D, autism
Scientific Study Links Anti-depressants In Drinking Water To Autism
Scientists Find ‘Baffling’ Link between Autism and Vinyl Flooring
Scientists Find Link Between Autism and Brainwaves
Scientists Link Gene Mutation to Autism Risk
Severity of Autism Linked to Length of Pregnancy
Sibling spacing may be tied to autism risk
Study links autism, diabetes in pregnancy
Study links folic acid to lower autism risk
Study: Autism risk tied to mom’s obesity during pregnancy
Study finds new evidence that vitamin D decreases risk of autism in children
Top 10 Chemicals Most Likely to Cause Autism and Learning Disabilities
Tuna and autism for unborn child – link?
TV Implicated In Rise Of Autism
TV Really Might Cause Autism
Use of Birth Certificates to Examine Maternal Occupational Exposures and Autism Spectrum Disorders in Offspring
Wi-Fi linked to childhood autism
Women Abused as Children More Likely to Have Kids with Autism

© 2012 by Rachel Cohen-Rottenberg

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ZOMG! Look! A Disabled Person Does Something!
Nov 1st, 2012 by Rachel Cohen-Rottenberg

On October 23, CBS News in New York ran a story about an autistic high school football player who kicked a game-winning field goal. The event was, according to the headline, “a moment for the ages.” I am not exaggerating:

Source: CBS New York

I’m going to parse the article a little bit at a time. It’s a combination of some great statements by the young man and his parents, and some absolutely atrocious inspiring-crip/perpetual-special-child material. It’s really a shame that the framing is so bad, because the statements from the player himself and the people involved in his life are really quite wonderful.

The article begins:

A high school student with autism becomes a hero on the football field. Sounds like a good movie doesn’t it? Well, it’s a true story.

So, right away, we’re in supercrip mode. The guy is a hero. And, at the same time, we’re led to believe that it is so absolutely unfathomable that a disabled guy should be a hero that it’s just like fiction. And since it actually happened in real life, we should all sit down before we faint.

It’s also kind of interesting that one kind of media is calling upon a different kind of media in order to frame the rather mundane occurrence of a football player kicking a winning field goal. We’re being asked to see the story not only from the perspective of a news report, but also as a kind of theatre. So we have two levels of interpretation layered over the fact that a young man kicked a football through a pair of uprights.

What makes the lens even more distorted is that, despite the frame of a “good movie,” I can’t think of a Hollywood movie in which a disabled person becomes an athletic hero. I can think of some in which the disabled person dies (Hello Million Dollar Baby), or ends up running madly around the soccer field with his kid on his shoulders (Hello I Am Sam), or draws with his foot (Hello My Left Foot), but I’m drawing a blank on a film with this theme. Maybe there is one, but the fact that it isn’t springing to mind troubles me, because the lens is about something that eludes my grasp. I keep thinking, “Well, of course there is one… Isn’t there?”

The score was tied with just 21 seconds left on the clock Friday night. Out trotted Brick High School’s Anthony Starego, an 18-year-old kicker who’s used to facing adversity.

Uh oh. There’s that adversity word. Always with disability, there’s that adversity word, just to make the mundane appear extraordinary. Do people not understand that life is a difficult thing for most human beings, and yet, we somehow manage to do things?

Starego was orphaned at the age of 3 and then grew up with a long list of developmental issues. So when he jogged out on the field to attempt a game-winning field goal against favored Toms River North, one couldn’t blame him if he didn’t feel overwhelmed by the moment.

The young man has certainly faced his share of hardship in losing his parents. There is no denying that. But that’s not what the word adversity is really about here. It’s about his autism. It’s about his “long list of developmental issues.” It’s about his body and what a burden it appears to be for the person narrating his story. If he had simply  been orphaned, it wouldn’t be a story. His disability is the focus.

What happened next was something usually reserved for Hollywood.

What? Disabled people don’t accomplish things in real life? Are we that boring?

And let’s be clear on what we’re talking about there. The young man kicked a field goal. A field goal. In a high school football game. Don’t get me wrong. It’s really fantastic that he won the game for his team. I’m completely excited for him. I’m just trying to understand why this is some sort of heroic and inspiring moral tale.

Oh, that’s right. The subtext is “A disabled person accomplished something, and we’re all shocked and amazed, because we all thought it was impossible, and now we have to make up a story about how it was nearly impossible.”

Okay. I’m getting it now.

He split the uprights and the place went crazy. But there was nothing ordinary about that kick. It was a lifetime in the making, CBS 2′s Otis Livingston reported Tuesday.

Wait. If you’re a high school football player, isn’t just about anything you do on the field “a lifetime in the making”? How is Anthony’s lifetime of working on his game any different from anyone else’s lifetime on that field? I’m assuming they all started out throwing a football in their backyards or at the park or in the street.

“As soon as the officials went like this, I was a blubbering idiot,” father Ray Starego said, demonstrating the hand movement for a successful field goal.

“I was just crying, but I wasn’t going to stop watching him because he was just jumping for joy. It really was unbelievable,” added Reylene Starego, Anthony’s mother.

Now, I love this part. I seriously do. In my book, the only people who get to cry and kvell and act like kicking a field goal is the greatest moment in the history of humankind are the parents. That’s what parents do. We get emotional. We get over-the-top emotional. About a game. Because we want our kids to be happy, and we want them to accomplish everything they set out to do, and the last thing we want is for them to come off the field in tears of disappointment.

I went nuts when my kid played goalie for the high school varsity soccer team. I got emotional. Every single time someone came near the goal, my heart was in my throat. Every single time my kid blocked a shot, I was beside myself with joy, relief, and excitement. All that stuff is in the job description of being a parent, and Anthony’s parents are clearly quite good at the job. More power to them.

If being the hero Friday night put Starego at the top of the mountain, his entire life has been an uphill battle getting there.

“When he came to us, he had been through 11 foster homes and he had had some difficulties. He had about six words to his vocabulary,” Reylene Starego said.

“He had kidney reflux; he had an asthmatic condition. Basically, it was a special needs adoption that we had gone through,” Ray Starego added.

The guy has gone through a lot, obviously. I wonder, however, why the young man’s medical issues are germane here and available for public view. Did the reporter really have to mention them? Aren’t they Anthony’s business?

Symptoms of autism include children performing repeated body movements. They often experience unusual distress when routines are changed, but those are the same traits that make Anthony a successful kicker.

Notice that we’re talking about an 18-year-old young man and his repetitive movements and love of routine, but the text refers to “children.” We’ve now gone from supercrip mode to infantilization mode. Funny how that works.

“Fifty times a day, that’s all he does. Just three steps back, one over and he hits the ball. That’s what he knows and that’s what he did,” coach Kurt Weiboldt said.

Anthony Starego agreed. As far as he’s concerned, practice makes perfect.

“I do the same thing over and over again. It helps me a lot, and I’m having the best day of my life,” he said.

I really love what Anthony is saying here. It shows the way autistic hyper-focus and perseveration can be assets in adulthood. And he’s clearly proud of his intense focus. Awesome stuff. I wish the story had stayed closer to Anthony’s perspective, because that’s the frame that would have been most interesting.

Children with autism also have trouble with social interactions, so making friends isn’t easy, but the football field is different. It’s a safe haven.

And now we’re back to “children with autism.” Apparently, the writer does not have Anthony’s intensity of focus. If he did, he would notice that Anthony is not a child, but a young man. The fact that the writer frames Anthony’s statements with infantilizing terms takes a lot of power away from Anthony’s perspective. It’s as though we keep switching frames, from seeing him as a child being spoken for, to seeing him as an adult describing his own process, to seeing him as a child being spoken for again. It’s as though his adult status is just too much for the writer to keep in focus.

“[Anthony is] just the man. He’s always happy, always puts a smile on your face,” Brick High quarterback Brendan Darcy said.

Oh, dear. Now, not only is Anthony a supercrip and a child, but he’s also special. I highly doubt that the quarterback would have said about any of his other teammates that they always put a smile on his face. It’s just not what high school football players tend to say about one another. But it’s just so inspiring to be on a team with a disabled guy, you know?

Do people really listen themselves when they refer to others as “always happy”? How is it possible for someone to always be happy? Or does his teammate just mean that Anthony isn’t scary, the way he thought an autistic guy would be? Or maybe he’s just surprised that an autistic guy is excited to play the game, instead of moping around feeling really crappy because he’s autistic.

Anthony said he doesn’t think of himself as being different than his teammates. He said he just has a job to do.

“I feel like I’m happy and calm and enjoying myself when I kick. [It’s] the time of my life,” he said.

You go, Anthony!

The Green Dragons’ only two wins of the season have come since Anthony became the kicker. He’s perfect on kicks, including that game winner. Their next game is this Friday against Lacey High School.

Here at the end of the piece, I feel almost let down. I know I shouldn’t. Anthony has a perfect record, and that’s very cool. But what I’m feeling is that this story should never have been about Anthony kicking a field goal. That’s not the real story. The real story is that after going through 11 foster homes, the young man got adopted by supportive people and didn’t end up in an institution, and now he gets to play football. Now that’s a story.

But that’s not a football story. That’s a “let’s do something about all the others who don’t have supportive families” story. And once you start thinking of all of those people who will never have Anthony’s opportunities, you don’t feel too inspired. You feel downright pissed off and depressed.

And we can’t have that.

References

CBS New York. “Autistic Player Has Moment For The Ages, Kicks Game-Winning Field Goal.” http://newyork.cbslocal.com/2012/10/23/autistic-high-school-football-player-has-moment-for-the-ages-kicks-game-winning-field-goal/. October 23, 2012. Accessed November 1, 2012.

© 2012 by Rachel Cohen-Rottenberg

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Reclaiming Memory: Searching for Great-Aunt Sarah
Oct 30th, 2012 by Rachel Cohen-Rottenberg

Following is a post I wrote in January of 2011 on my Journeys with Autism blog. I have been thinking a great deal lately about Sarah. I want to honor her by telling her story here.


In 2009, while searching Ancestry.com for new information to add to my family genealogy, I discovered the existence of a relative about whom no one in the family had ever spoken. She was my paternal grandfather’s younger sister (my father’s aunt), and her name was Sarah. During a search of census records, I learned that she had been a patient at the Massachusetts State Hospital in Canton, MA in 1920, when she was 11 years old, and at the Wrentham State School in 1930, when she was 21. In other words, she appeared to have resided in state institutions from the time she was a child.

My father’s family has a rather unusual last name, so when I came upon Sarah, I felt fairly certain that she was related to us. Because the state schools were often warehouses for people with physical and mental disabilities, I felt from the beginning that Sarah had been “disappeared” from the family because she had been disabled.

In the face of this attempt to erase her from memory, I began a quest to learn everything I could about Sarah and to bring her into the light of day.

I was saddened by everything I found.

Sarah’s father, apparently, was known as “vigorous, gregarious, a hard drinker and a gambler, and inclined to shirk family responsibilities.” Her mother, on the other hand, was described as “mentally incompetent, elusive, and uncooperative.” I’m not sure that Sarah’s mother was actually any of those things, since living with a hard drinker and gambler who chronically refused to take care of his family very likely explained how she presented to the rest of the world.

It’s clear that the family was desperately poor, as evidenced by their contact with various social service agencies throughout the 1920s, and by the placement of two of Sarah’s younger sisters with foster families during the 1930s. There were, in all, seven children who survived early childhood. Four others died very young. Sarah was the second eldest of the surviving children, having been born in 1908.

I soon found out that she was, indeed, physically disabled, and had been diagnosed with “congenital spastic paralysis,” now known as cerebral palsy, when she was very young. But even more interesting are the possible markers of autism: she was a nervous baby, cried continually, tore at her hair, scratched her face unmercifully, and first talked at 4 years of age.

In 1915, at the age of 7, Sarah was placed in a family home with another disabled child. In September of that year, she began in the first grade at the local public school.

In 1916, she was placed in a state home—the Massachusetts Hospital School in Canton, MA—because her foster mother could no longer afford to take care of her. A teacher at this school considered her to be “of slow mind, lacking in concentration, and having problems with attention.” (ADD, anyone?) In a painful example how easily disabled people are dismissed, it was suggested that Sarah be placed in a school for the feebleminded when she was older.

By 1920, the people at the Massachusetts Hospital School said that they could do no more for her. She was judged “not mentally competent” to compete with the children in her grade. It appears that she was placed in another family home before a space opened up for her at the Wrentham State School.

She entered the Wrentham State School in 1921, at the age of 12, with the hideous diagnosis of “moron.” As I look at a photograph of her taken around that time, I find myself amazed that anyone could have missed the focused, sad intelligence in her eyes. In fact, when I first saw the photograph, I burst into tears. She was the only person in the family whose eyes, whose facial expression, and whose look of anger and sadness at the insanities of the world reminded me so thoroughly of my own.

About 10,000 people were institutionalized at Wrentham during its history. Despite Sarah’s diagnosis, she was described as adapting herself very quickly to her surroundings, expressing herself relatively well, and displaying a full range of emotions. Apparently, she always tried to do her best and took pride in neat work—words that would have perfectly described me as a child. She was also a good singer—another trait that we share in common.

Unfortunately, Sarah began to fall apart in the late 1920s. She began to behave and talk in “peculiar” ways, becoming depressed and unhappy. She felt teased by her peers. She lost her appetite for food, and her behavior became disruptive. One can only guess at what she was going through. Had she been assaulted? Had she collapsed under the weight of chronic institutionalization? Had her longing for friends, family, and home finally become more than she could bear? We will never know.

She showed no evidence of being delusional and yet, when she left Wrentham in 1930 and entered the Foxborough State Hospital, she was given a diagnosis of “dementia praecox,” the now-defunct term for schizophrenia. It was certainly not unusual for autistic people, especially women, to be misdiagnosed with schizophrenia and other mental disorders, especially when the process of institutionalization itself created mental and sensory breakdowns. As a state mental institution, Foxborough was a dumping ground not just for physically and mentally disabled people, but also for poor non-disabled children and recalcitrant wives. In those days, it was not unusual for poor children to be placed in institutions, and for rich people to take them out and hire them as maids.

Sarah, however, never had this dubious opportunity. Instead, she entered the Foxborough State Hospital at the age of 21 and never came out. She died of tuberculosis of the lungs in 1934, when she was 25 years old. When I received a copy of her death certificate, I was horrified to learn that she had been ill with tuberculosis for ten months before she died. Ten months, suffering in hell with a wasting disease. It makes me physically sick to think about it.

Under most circumstances, the indignities visited upon the patients at Foxborough followed them into death. In general, the inmates (for that is what they were) were buried on hospital grounds, their graves marked not with their names, but with their patient numbers. As a result, if anyone in a later generation were to visit his or her deceased relative, it would be impossible to know where to look.

I was determined to honor Sarah by visiting her grave, and when I wrote to the state mental health agency to find out her patient number, I was surprised to learn that she had not been buried at Foxborough at all, but in the Arbeiter Ring (Workman’s Circle) cemetery in Boston. I have no idea who got her out of Foxborough to bury her properly, but I hope that the person is reaping untold benefits in heaven for this act of humanity. There is a non-profit agency that oversees all the old Jewish cemeteries in Boston, so I wrote to them right away to see whether they would send me a photograph of Sarah’s grave. To my dismay, I learned that there was no grave marker at all.

So Bob and I decided to get Sarah a proper grave marker, which was placed this past fall. On the marker appear her name, her date of birth, her date of death, and my favorite line from Psalms: Those who sow in tears shall reap in joy.

I hope that she has found joy in the next world.

I hope that she feels the peace of knowing that she has the dignity of a marked grave.

I hope she knows that her picture has taken its place on our wall, along with those of our other ancestors.

I hope it heals her that I am telling her story and making sure that people remember the shame and injustice of what happened to her.

My Hebrew name is now “Rachel Batya bat Sarah Channa”—Rachel Batya, daughter of Sarah Hannah. I have taken Sarah as my spiritual mother. Every Friday night at our Shabbos table, I receive a blessing, and her name is blessed with mine. She never had a chance to have a child of her own, but in some way that I don’t entirely understand, I am her daughter. I am a disabled woman, born into the same family two generations later, and I have what she didn’t have. I have the power to stand up and say, “No more.”

No more dismissal. No more shame. No more isolation. No more disappearances. No more silence.

No more Aunt Sarahs.

Not now. Not ever.

© 2011-2012 by Rachel Cohen-Rottenberg

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Autism and Systemizing: Why Structure Rocks (And It’s Not What You Think)
Oct 29th, 2012 by Rachel Cohen-Rottenberg

Most readers are probably familiar with the stereotype of the highly rational autistic geek with a mind designed for science and numbers — an idea made popular by Simon Baron-Cohen, who considers us “systemizers” with a particular talent for technology, science, mathematics, and related fields (Baron-Cohen 2011, 96, 106-107, 122). The stereotype appears in all manner of media — mainstream news stories, popular books, online articles, and Facebook threads. Based on this stereotype, you get the fascinating phenomenon of retroactive diagnosis, in which everyone from Isaac Newton to Albert Einstein was autistic. I understand the need to develop cultural role models as a source of pride, but there are lots of living, breathing autistic people excelling at the business of being human. Surely, we could concentrate on what they bring?

I tend to chafe against the stereotype of the autistic science geek, for a number of reasons. For one, I have absolutely no interest in science and mathematics. None. I respect science. I respect people who engage in scientific research with conscientiousness and rigor. But the closest I come to having anything to do with math and science these days is to balance my check register every week — longhand, using a calculator to check my math. I can’t say it’s something I love. I like knowing that the books balance and that our money is accounted for, and I’ll admit to a moment of satisfaction when everything comes out just right, but I can’t say that I look forward to the process with great eagerness. It’s just a necessity, like washing my clothes or mopping my floor. It’s something that must be done, and I try to get as much enjoyment out of the doing as I can, but that’s quite different from being naturally wired for it.

I will acknowledge, however, that I do a lot of systemizing. I make lists of tasks. I create rules to keep my blog a safe space. I’m a very organized writer; if I don’t outline my writing beforehand in Word, I write out ideas in my head and switch them around in my mind’s eye, as though they’re part of a visual composition that I have to get just right.  I organize my email in folders. I organize my family genealogy in a database. I organize my graduate school research into a dialectic journal. I organize my weekly cleaning tasks into daily reminders on my Blackberry. I organize files and memorabilia into boxes in the attic. (And yes, they’re all labeled.) I made a living for 15 years as a technical writer organizing technical information, and I won an award for a 200-page manual that was basically an annotated list of industry acronyms. So yeah, you look at my life from the outside, and it just looks like my brain is wired to systemize the hell out of everything.

But here’s the thing: The problem is that people spend an awful lot of time talking about the fact that autistic people systemize, but they don’t ask much about why we systemize. Personally, I don’t make lists and rules and keep things in order because I have a natural love of lists and rules and order, or because my mind naturally gravitates to them, or because I’m wired to be a systemizer. I’d really rather not have to be making lists and organizing the hell out of things; I’d rather sail through life as messily and as clumsily as most other people. But I systemize because my experience of the world is intense almost beyond description, because I have to work very hard on things like hearing and speaking that most people don’t, and because most of the information that comes through my senses is not filtered in the way that most people take for granted. So yes, I do a lot of things to organize my life and my thoughts, but it’s an adaptation and a way to gain control over a very intensely felt experience.

It was a huge relief when I got diagnosed and realized I wasn’t a just a control freak. It was a wonderful day when I realized that I’m a person with a disability who has adapted to it by using my mind to structure my experience. And yes, I do have a very analytical mind. I can analyze the hell out of almost anything. But my analytical skills are in direct proportion to how painfully sensitive I am about a great many things that aren’t even a blip on the radar of most people.

Of course, the other problem with the whole idea of autistic people being systemizers is that systemizing is placed in opposition to empathizing (Baron-Cohen 2011, 117) — as though one can have a high level of one or the other, but not both. That’s absolute nonsense. My systemizing is directly proportional to my empathizing, which is directly proportional to my intensely sensitive experience of life. They’re all of a piece. They’re not in opposition. Not in any way, shape, or form. If I didn’t feel the experiences and the suffering and the joy of other people so intensely, I wouldn’t concern myself so passionately with creating structure.

Structure is good. Structure rocks. Structure is one of my favorite words. But it’s not because I have a mind that naturally gravitates to structure. It’s because I have a mind that needs structure to contain and make sense of the intensity of experience that is part of autism.

References

Baron-Cohen, Simon. The Science of Evil: On Empathy and the Origins of Cruelty. New York, NY: Basic Books, 2011.

© 2012 by Rachel Cohen-Rottenberg

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This Blog is a Disability-Safe Space
Oct 26th, 2012 by Rachel Cohen-Rottenberg

I had hoped that I wouldn’t need to write this post. The fact that I have to write it speaks volumes about the kind of world that disabled and other minority people live in.

Up until now, I’d thought that all I’d need to do to create safe space on this blog is to delete outright expressions of nastiness and personal attacks. But I was wrong. There is a more subtle level of disrespect that goes on around disabled people, and in order to keep this space safe, I need to speak to it.

This blog is for the purpose of discussing media representations of disability. As such, it is a space in which disabled people’s perspectives are welcomed, valued, and protected. I welcome comments from everyone, and I want to engage in conversation with nondisabled people about disability issues. But no matter who you are, if you want to comment here, you will need to show respect for disability perspectives. That is not to say that you have to agree with them. (God knows, I don’t agree with everything that anyone says, disabled or not.) In fact, I welcome challenges to my ideas and I thrive on productive disagreement. But in order to have productive disagreement, there has to be respect.

By way of illustration, the following kinds of approaches are not respectful and will result in your losing the ability to post to this blog:

  • Stating that people who protest gloom-and-pity depictions of disability are just in denial about the difficulties of disability.
  • Dismissing the perspectives of disabled and other minority people as biased and subjective, on the assumption that somewhere in the world, there is someone free of bias and subjectivity.
  • Getting into other people’s heads and telling them why they feel as they do, rather than simply speaking to their perspectives and taking them seriously.
  • Accusing people who critique representations of disability of being divisive to the community.
  • Failing to address the issues raised by the original piece and moving the goal posts by raising issues that have nothing to do with the original piece.
  • Disregarding the boundaries of the blog owner or a fellow commenter.

If you want to engage in this kind of disrespect, all you have to do is open up a connection to the Internet and you will find a world of places to do it. This blog is not such a place. It is a safe space for disabled people, and these are my rules for keeping it a safe space.

Thank you in advance for respecting this policy.

© 2012 by Rachel Cohen-Rottenberg

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