© 2013 by Rachel Cohen-Rottenberg

© 2013 by Rachel Cohen-Rottenberg

© 2013 by Rachel Cohen-Rottenberg

© 2013 by Rachel Cohen-Rottenberg

I’ve posted my paper on ableism in the anti-vaccination movement under Academic Work on my sidebar. You can find the link here. Following is the introduction to the paper:

In U.S. culture, visual and textual representations perpetuate the ideology of ableism, a set of perspectives and practices that make the able body the epitome of human worth. Like other forms of prejudice, ableism permeates our culture and rests on a number of distortions and largely uncritiqued assumptions. For this paper, I will look at the ways in which ableism is embedded in the anti-vaccination movement. I will do so by carrying out a qualitative content analysis of an anti-vaccination Facebook page called Great Mothers (and Others) Questioning Vaccines. In the course of the paper, I will show that the following ableist assumptions emerge from the Great Mothers page: disability is simply a medical issue; disability is a human tragedy; disabled people are passive victims; the able body is perfect; one should both ignore and stare at disabled people; disability is a story about individuals, but never about the society that creates disabling barriers; disabled bodies are economic and social burdens; and someone or something must be to blame for disability.

In this paper, I will begin by describing the methodology I will use for the content analysis. Then, in order to make clear the theoretical framework for my analysis, I will outline my core assumptions. From that point forward, I will devote a separate section to each of the themes about disability and the body that emerge from the Great Mothers page.

© 2013 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

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.

Note: I invite you to share your experience in the comments. If you write about something that one of your children has experienced, please use pseudonyms for yourself and for all concerned. Thank you.

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

© 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.

References

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.

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.

© 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.