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Scapegoating Schizophrenia: Paul Steinberg’s Shameful New York Times Op-Ed Column
Dec 27th, 2012 by Rachel Cohen-Rottenberg

The scapegoating continues.

This week’s New York Times Op-Ed page features an utterly irresponsible article in which psychiatrist Paul Steinberg baselessly blames schizophrenia for mass shootings. In a truly chilling fashion, Dr. Steinberg argues that, in order to prevent such tragedies, we need to stop worrying our heads about the civil rights of people with schizophrenia:

[W]e have too much concern about privacy, labeling and stereotyping, about the civil liberties of people who have horrifically distorted thinking. In our concern for the rights of people with mental illness, we have come to neglect the rights of ordinary Americans to be safe from the fear of being shot — at home and at schools, in movie theaters, houses of worship and shopping malls.

Dr. Steinberg makes a pejorative and unsubstantiated association here between schizophrenia and the mass shootings that have taken place in 2012. He refers to shootings “at home and at schools” (a clear reference to the December 14 Newtown, Connecticut massacre), “in movie theaters” (a clear reference to the July 20 Aurora, Colorado theater shooting), “houses of worship” (a clear reference to the August 5 shooting at a Sikh Temple in Oak Creek, Wisconsin), and “shopping malls” (a clear reference to the December 11 shooting at a shopping mall in Portland, Oregon).

Terrifying events, to be sure. But before we start tossing people’s civil liberties out the window, let’s look at whether any of the perpetrators of these violent acts actually had schizophrenia:

As far as we know, Adam Lanza, the Newtown shooter, was not diagnosed with schizophrenia, nor have we heard evidence that he was delusional.

James Holmes, the shooter in Aurora, saw a psychiatrist who specializes in schizophrenia — which means precisely nothing regarding his own diagnosis. Her practice was not limited to people with schizophrenia. He has not been diagnosed with the condition.

Wade Michael Page, who murdered six people at a Sikh Temple, was a racist skinhead who no one has ever remotely hinted showed signs of schizophrenia.

Jacob Tyler Roberts, who was responsible for the shooting at the mall in Portland showed no signs of delusional thinking to anyone around him, including his girlfriend.

But that doesn’t stop Dr. Steinberg from coming up with two new culprits:

At Virginia Tech, where Seung-Hui Cho killed 32 people in a rampage shooting in 2007, professors knew something was terribly wrong, but he was not hospitalized for long enough to get well. The parents and community-college classmates of Jared L. Loughner, who killed 6 people and shot and injured 13 others (including a member of Congress) in 2011, did not know where to turn.

Of course, Seung-Hui Cho was never diagnosed with schizophrenia in his lifetime. Psychiatrists like Dr. Steinberg have only done so post-mortem, and the more responsible ones acknowledge that they cannot make such a diagnosis with any certainty. The only mass murderer to whom Dr. Steinberg makes reference who has actually been diagnosed with schizophrenia is Jared Lee Loughner.

There are very good reasons that psychiatrists have to meet a client in person in order to render a diagnosis: second- and third-hand testimony is notoriously unreliable, and diagnostic assessments can take days to complete. Oddly enough, Dr. Steinberg seems to be aware that he is breaking the ethical standards of his profession by diagnosing people he has neither met nor treated:

I write this despite the so-called Goldwater Rule, an ethical standard the American Psychiatric Association adopted in the 1970s that directs psychiatrists not to comment on someone’s mental state if they have not examined him and gotten permission to discuss his case. It has had a chilling effect. After mass murders, our airwaves are filled with unfounded speculations about video games, our culture of hedonism and our loss of religious faith, while psychiatrists, the ones who know the most about severe mental illness, are largely marginalized.

As far as I can see, the only “unfounded speculations” here are coming from Dr. Steinberg. It is hard to imagine how an affluent psychiatrist in private practice could imagine himself to be “marginalized,” particularly when it comes to armchair diagnoses. Given that his entire piece further marginalizes an entire group of people who already far more likely to be the victims of violent crime than to be the perpetrators, the term rings especially hollow.

To his credit, Dr. Steinberg does acknowledge schizophrenia is not generally associated with violence, though he then turns around and contradicts himself:

The vast majority of people with schizophrenia, treated or untreated, are not violent, though they are more likely than others to commit violent crimes.

Dr. Steinberg rather skews the evidence here. In fact, people with schizophrenia are not more likely to commit violent crime when one factors in the presence of substance abuse. A PLoS study found that, when controlling for the presence of drug and alcohol abuse, people with psychosis are no more likely to commit violent crime that people without psychosis:

Importantly the authors found that risk estimates of violence in people with substance abuse but no psychosis were similar to those in people with substance abuse and psychosis and higher than those in people with psychosis alone. (Gulati et al. 2009)

In other words, people with no psychosis who abuse alcohol and drugs have a higher risk of committing a violent crime than people with psychosis who do not abuse alcohol and drugs, and a similar risk to people with psychosis who do. The factor to be looking at is drug and alcohol abuse, not schizophrenia.

That point seems to have been lost on Dr. Steinberg. He should know better. Shame on him.

References

ABC News. “Clackamas Town Center Shooting: Who Is the Alleged Shooter?” http://abcnews.go.com/GMA/video/clackamas-town-center-shooting-jacob-roberts-alleged-shooter-17959547. December 13, 2012. Accessed December 27, 2012.

The Atlantic. “Diagnosing Adam Lanza.” http://www.theatlantic.com/health/archive/2012/12/diagnosing-adam-lanza/266322/#. December 13, 2012. Accessed December 27, 2012.

Billeaud, Jacques. “Trial not likely for Jared Lee Loughner in 2012.” Boston.com, January 6, 2012. Accessed December 27, 2012. http://www.boston.com/news/nation/articles/2012/01/06/trial_not_likely_for_jared_lee_loughner_in_2012/.

Gulati, Gautam, Louise Linsell, John R. Geddes, and Martin Grann. “Schizophrenia and Violence: Systematic Review and Meta-Analysis.” PLoS Med 6, no. 8 (2009). doi:10.1371/journal.pmed.1000120.

Laris, Michael, Jerry Markon, and William Branigin. “Wade Michael Page, Sikh temple shooter, identified as skinhead band leader.” The Washington Post, August 6, 2012. Accessed December 27, 2012. http://articles.washingtonpost.com/2012-08-06/world/35491487_1_end-apathy-sikh-temple-skinhead-band.

PBS News Hour. “Alleged Colorado Shooter Saw Schizophrenia Expert.” http://www.pbs.org/newshour/bb/social_issues/july-dec12/colorado_07-27.html. July 27, 2012. Accessed December 27, 2012.

Psychiatric News Alert. “People With Schizophrenia More Likely to Be Victims, Not Perpetrators of Violence.” http://alert.psychiatricnews.org/2012/05/people-with-schizophrenia-more-likely.html. May 10, 2012. Accessed December 27, 2012.

Steinberg, Paul. “Our Failed Approach to Schizophrenia.” The New York Times, December 25, 2012. Accessed December 27, 2012. http://www.nytimes.com/2012/12/26/opinion/our-failed-approach-to-schizophrenia.html?_r=0.

Welner, Michael. “Cho Likely Schizophrenic, Evidence Suggests.” ABC News, April 17, 2007. Accessed December 27, 2012. http://abcnews.go.com/Health/VATec h/cho-schizophrenic-evidence-suggests/story?id=3050483#.UNxJWnfLBQF.

© 2012 by Rachel Cohen-Rottenberg

Scapegoating in the Aftermath of the Sandy Hook Shooting: Yes, It’s Really Happening to Us
Dec 26th, 2012 by Rachel Cohen-Rottenberg

Despite a number of clarifications in The New York Times and on ABC News, NBC News, and CNN that Asperger’s is not a predisposing factor for premeditated violence, the spurious association of Asperger’s with the violence in Newtown, CT is still strong. In part, the media is responsible for not having clarified early on that yes, Adam Lanza shot 27 people and yes, Adam Lanza was apparently autistic, and no, one had nothing to do with the other. Such failures were rife. For example, in exploring a possible explanation for the shooting, Dr. Xavier Amador opined on Piers Morgan Tonight that people with Asperger’s are missing an essential element of humanity:

Well, actually, a symptom of Asperger’s, and this is one report coming out which may or may not be true, is something’s missing in the brain, the capacity for empathy, for social connection, which leaves the person suffering from this condition prone to serious depression and anxiety.

But the media’s response is only a symptom of a much larger problem. Its willingness to blame Asperger’s is a reflection of a cultural association between disability and evil that has lasted for centuries. As Colin Barnes writes:

Throughout the Middle Ages, disabled people were the subject of superstition, persecution, and rejection. Haffter (1968) has pointed out that in medieval Europe disability was associated with evil and witchcraft. Deformed and disabled children were seen as ‘changelings’ or the Devil’s substitutes for human children, the outcome of their parents’ involvement with the black arts of sorcery. The Malleus Maleficarum of 1487 declared that these children were the product of the mothers’ intercourse with Satan… Protestant reformer Martin Luther (1483-1546) proclaimed that he saw the Devil in a profoundly disabled child. If these children lived, Luther recommended killing them.” (Barnes 2010, 21)

Nineteenth- and twentieth-century eugenicists picked up this connection between disability and depravity, believing “that there were genetic links between physical and mental impairments, crime, unemployment and other social evils” (Barnes 2010, 26). The linkage has come down to the present day in the pernicious belief that disability is synonymous with narcissism and anti-social behavior (Siebers 2011, 34-35).

I’ve read a number of comments online that suggest that autistic people and autism parents are overplaying the scapegoating of Asperger’s. People say that the mainstream media has issued its clarifications and that the problem is solved. Unfortunately, it’s not that easy. Once this iteration of the cultural narrative about disability hit the airwaves, it quickly took root among ordinary people. Giving life to a well-worn untruth while people are in a state of nearly irrational fear is a difficult thing to undo. To give you a sense of just how deep the damage goes, I offer the following examples.

On the Volconvo forum, one commenter refers to people with autism and mental illness as “broken-minded defects” who are “dangerous” and whom society needs to monitor and imprison inside locked wards:

A commenter on a TIME article suggests that autistic people are “mutants” who need to be placed in “psychiatric facilities” and ultimately removed from the gene pool for the good of society:

And then there was the person who started a Facebook page and called for the killing of autistic children. (To its credit, Facebook quickly removed the page.)

This kind of scapegoating has begun the inevitable creep off the major news sites and social media and into the lives of ordinary autistic people and their families. Three friends have given me permission to share their experiences.

Here is the story told by my friend Sara, a woman with Asperger’s. While standing at the post office five days after the tragedy, she spoke to a woman, an Ivy League graduate, who said that Asperger’s — and Asperger’s alone — had caused the Sandy Hook shooting. Sara posted the following on her Facebook status:

Another friend describes a situation in which a false belief in a link between autism and violence caused his wholly nonviolent autistic child to become suspect in the eyes of a relative:

Finally, my friend C describes a more frightening scenario. Her son J, who is 14 years old, had gone to Wal-Mart to look for a Christmas tree. He has Asperger’s and bipolar disorder, and people in his community are aware of his diagnoses. He was wearing headphones to block out sensory input, and, at one point, attempted to find a quieter place in the store. He had his hand on a price list in his pocket when someone who knew him went into a panic — a panic that resulted in the young man’s injury:

Like Trayvon Martin in his hoodie, the scary guy on the block appears to be, in the minds of some people, the kid with Asperger’s with his hands in his pockets. I’m just waiting for someone to suggest that, as Geraldo Rivera said about black men giving up their hoodies, young men with Asperger’s should wear pocketless clothing.

The stunning level of irrationality and fear being leveled at people with autism is tremendous cause for concern. In the face of this scapegoating, autistic people and autism parents are countering with positive images of autistic children and adults that show us as full human beings — ordinary, extraordinary, beautiful, and proud. To see these images, please go to the following Facebook pages:

Autism Shines
Autistics, Not Monsters
Disability and Representation

Let’s spread the word to end the scapegoating. And let’s keep doing it, now and always, wherever and whenever we can.

References

Barnes, Colin. “A Brief History of Discrimination and Disabled People.” In The Disability Studies Reader, edited by Lennard J. Davis, 20-32. New York: Routledge, 2010.

Christopher, Tommy. “Piers Morgan Quack Says People With Autism Lack Empathy: ‘Something’s Missing In The Brain’.” Mediaite, December 14, 2012. Accessed December 24, 2012. http://www.mediaite.com/tv/piers-morgan-quack-says-people-with-autism-lack-empathy-somethings-missing-in-the-brain/.

Facebook. www.facebook.com. Accessed December 24, 2012.

— “Autism Shines.” http://www.facebook.com/AutismShines?fref=ts. Accessed December 24, 2012.

— “Autistics, Not Monsters.” http://www.facebook.com/AutisticsNotMonsters?ref=ts&fref=ts. Accessed December 24, 2012.

— “Disability and Representation.” http://www.facebook.com/DisabilityAndRepresentation. Accessed December 24, 2012.

Falco, Miriam. “Groups: Autism not to blame for violence. CNN, December 19, 2012. Accessed December 24, 2012. http://www.cnn.com/2012/12/17/health/connecticut-shooting-autism/index.html.

Fox, Maggie. “Asperger’s not an explanation for Lanza’s Connecticut killing spree, experts say.” NBC News, December 18, 2012. Accessed December 24, 2012. http://vitals.nbcnews.com/_news/2012/12/18/15994353-aspergers-not-an-explanation-for-lanzas-connecticut-killing-spree-experts-say?lite.

Gilman, Priscilla. “Don’t Blame Autism for Newtown.” The New York Times, December 17, 2012. Accessed December 24, 2012. http://www.nytimes.com/2012/12/18/opinion/dont-blame-autism-for-newtown.html.

Nano, Stephanie. “Experts: No Link Between Asperger’s, Violence. ABC News, December 16, 2012. Accessed December 24, 2012. http://abcnews.go.com/US/wireStory/experts-link-aspergers-violence-17987339#.UNj7VHfLBQG.

Rochman, Bonnie. “Guilt by Association: Troubling Legacy of Sandy Hook May Be Backlash Against Children with Autism.” TIME, December 19, 2012. Accessed December 24, 2012. http://healthland.time.com/2012/12/19/guilt-by-associationtroubling-legacy-of-sandy-hook-may-be-backlash-against-children-with-autism/.

Siebers, Tobin. Disability Theory. Ann Arbor, MI: University of Michigan Press, 2011.

Volconvo. “Kindergarten isn’t just about identifying colors, shapes and sizes anymore.” http://www.volconvo.com/forums/society-rights/43038-kindergarten-isn-t-just-about-identifying.html. December 14, 2012. Accessed December 24, 2012.

© 2012 by Rachel Cohen-Rottenberg

This Is All I Have To Say
Dec 23rd, 2012 by Rachel Cohen-Rottenberg

It’s Happened Again: Apparently, It’s Let’s Publicly Defame a Family Member By Comparing Him to Adam Lanza Week
Dec 21st, 2012 by Rachel Cohen-Rottenberg

Last Friday, there was the infamous I Am Adam Lanza’s Mother piece.

This Friday, there is an equally disgraceful piece called My brother is not Adam Lanza, but he could be, in which the author, under her own name, with a photo of her brother, says that he could be the next Adam Lanza. Or that he could have been. If his parents hadn’t done such a good job. And he weren’t such a nice person. Or something.

Please, dear readers, answer me two questions: What makes people unable to restrain themselves from blowing the privacy of family members? And what compels them to put a photo of a family member in a piece in which said family member is likened to Adam Lanza?

The author acknowledges that Asperger’s isn’t associated with violence. She acknowledges that her brother, who has Asperger’s, has never committed a violent act in his life. The closest he has ever come has been to get up into her face, with his fists, once.

It was only years later as I watched my brother shaking with rage, as he struggled to hold himself together, with his fist clenched inches from my face that I understood how intense frustration and pain could explode out of a person.

He has never hit me, or any family member, although there are times he uses up every ounce of self- control restraining himself. This incredible effort and bravery, is testament to his goodness.

On these rare occasions I wonder what it would take to push him over the edge. Is that the difference between him and Adam Lanza?

So, apparently, in the mind of Pamela Mirghani, shaking with rage at a family member, if the person shaking with rage happens to have Asperger’s, suggests a risk for committing mass murder. I can’t even begin to parse the logic there, because there isn’t any. The statement is completely prejudicial. Does she realize how many non-autistic people get up in other people’s faces with their fists, and worse, and don’t go on to shoot up schools?

Millions of people, all over the world, feel like hitting people and they don’t do it. And millions of people, all over the world, feel like hitting people and — unlike her brother — they do. Does that make all of these people potential mass murderers? Of course not. And even if it did, why in God’s name link it to Asperger’s, especially when she admits that Asperger’s isn’t linked to violence at all:

While violence may not be linked to autism, frustration is. Without the tools, help and support to cope with that frustration it can overwhelm the sufferer.

I am not Adam Lanza’s sister. My brother is NOT Adam Lanza. But he could have been, maybe could still be under certain circumstances. And acknowledging this is not wrong.

Yes, folks. She just said that her brother with Asperger’s, who has never been violent, who on “rare occasions” has gotten so upset that he wanted to hit someone, could become a mass murderer under certain circumstances — purely because his Asperger’s makes him frustrated. Of course, that blithely ignores the fact that all studies show that Asperger’s is not associated with premeditated violence, and that there is no evidence that mere frustration makes someone load weapons into his car, drive to a school, and commit murder and mayhem. But hey, who needs studies — not to mention common sense — when you can defame and violate the privacy of a family member for no good reason?

So yes, Pamela. Acknowledging something, when it’s entirely false, prejudicial, and defamatory, is wrong. Saying that anyone with Asperger’s could become a mass murderer under certain circumstances, simply because the person has Asperger’s, is wrong. Saying that your own brother could become a mass murderer, merely because he shares a diagnosis with someone who just committed an unthinkable act, is wrong. There is nothing about Asperger’s that predisposes people to premeditated violence. Nothing at all.

To suggest that your brother with Asperger’s is capable of such a thing, purely because of his disability, not only tars and feathers him, but also tars and feathers everyone who has Asperger’s.

Do you know what that means? Do you know the harm that could come from articles like this one? Do you know the kind of fear that autistic people are feeling right now because we’re being scapegoated in the media for the evil that was done last week? Any idea at all? Do you know how this stigmatizes your brother? Do you understand the humiliation involved in calling him a potential mass murderer? Do you grasp the fact that it puts your brother — and all of us — in potential danger for you to say such a thing in public?

Great job, Pamela. What a nice Christmas present to your brother, to autistic people, and to those who love us. Merry Christmas to you, too.

Sources

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.

Mirghani, Pamela. “My brother is not Adam Lanza, but he could be.” National Times. December 21, 2012. Accessed December 21, 2012. http://www.watoday.com.au/opinion/my-brother-is-not-adam-lanza-but-he-could-be-20121221-2bql1.html.

© 2012 by Rachel Cohen-Rottenberg

Note: Anyone who would like to protest the nature of Pamela Mirghani’s article is welcome to share a link to this piece in an email to news@watoday.com.au. You can also find WA Today, on whose site the piece appears, on Twitter at @watoday.

Guest Post: A Letter to Elisabeth from the Mother of an Autistic Son
Dec 21st, 2012 by Rachel Cohen-Rottenberg

This is a guest post by my friend Jillsmo over at Yeah. Good Times. She is the mother of two boys, one of whom has autism. The piece is addressed to Elisabeth, the person to whom I directed my last post. Please feel free to share it widely.

—-

This screenshot has been making the Facebook rounds; I don’t know where it originated from and I’ve done my best to remove the identifying information. Seeing this makes me want to start sobbing and run and hide from the world, but instead of lying on the floor in the fetal position, I thought I would try to calmly respond to this, in the hopes that Elisabeth might see it.

Elisabeth, my son is autistic; I call him Child 1. He’s 10 years old, will be 11 in January. His autism affects him in a way that causes him to spend a good deal of time “lost” in his own thoughts. When you talk to him, he is very likely to respond to you in a way that involves whatever he is thinking about (elevators, subway trains, etc.) and oftentimes it doesn’t make a lot of sense. He also flaps his hands and runs back and forth a lot. He doesn’t like it when other people try to engage with him, particularly people his own age. He likes to be alone. If you were to meet him, it would be obvious to you almost immediately that there was something “different” about him. You wouldn’t necessarily know what was going on, but you would know that there was something happening.

Sometimes he gets angry with me, usually because he doesn’t get his way, much like any other kid, and when he does he will hit me. He doesn’t hit hard, he doesn’t cause injury, and he does it only to express his frustration. He feels frustrated because he’s not getting what he wants but also because he has a very difficult time explaining to me how he is feeling. Have you ever been having a conversation and suddenly you can’t find the word to describe what you want to say but you don’t know why? You might say it’s “on the tip of my tongue,” or something similar. Imagine if all of your words were always “on the tip of your tongue.” That’s how my son feels almost all of the time, and as you hopefully are able to understand, that can be a very frustrating feeling. If you felt like that all the time, you might want to hit me, too: in the moment.

But then the moment is over, and my son’s frustration will subside, and he will go about his business just as happily as before. This is typical autistic behavior, and it comes with differing levels of severity depending on the individual person. What is not typical autistic behavior is somebody who will irrationally direct violent rage onto a person who is not immediately connected to their situation. They will not spend any time plotting revenge, or planning what they will do next; they will not drive to a different location and shoot people they don’t even know. When the frustration is gone, it is gone.

My son is who you’re talking about when you refer to “these monsters,” and I’m writing this now because it’s so important to me that you know about him, and others likes him. Autistic people are not “sick fucks.” My son is not a “sick fuck.” He is a sweet, beautiful, smart child, who is funny and warm and caring, just like most autistic people are, regardless of their ability to communicate. Elisabeth, what happened in Connecticut didn’t happen because the shooter was autistic.

Here’s another point of information for you to know: 46% of autistic children have reported being bullied in middle school and high school. This happens for a number of reasons, most notably because 1. They are noticeably “different,” as I mentioned about my son earlier, and 2. There is a good deal of misinformation out there about autism, a lot of which is being spread by an irresponsible media at the moment, and your words here cause harm. You are helping to spread incorrect information about my son and you are causing him harm.

You need to know that my child has a much greater chance of being a victim of violent crime than of being a perpetrator. You need to know this, Elisabeth; you need to be aware of how your words cause harm. I understand your anger at the situation, I’m angry, too; and I understand your need to try to find meaning in why 20 babies and 6 adults had to die, but I promise you, Elisabeth, I promise: autism is not the reason for this.

I’m happy to talk with you more about this privately if you’d like to contact me. jillsmo at gmail.com; I promise I’m a nice person and my goal here is to educate, not to cause a fight.

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.”

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.

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

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

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

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

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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