© 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

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

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

By now, most people are aware of last night’s tweet by Ann Coulter, in which she commented upon the presidential debate in a manner consistent with her usual good taste and civility:

Oh, yes. Another disability slur. Another piece of mockery. Another way of saying how much you despise someone by comparing that someone to a disabled person. Oh, ha ha ha. So very clever. It just never seems to get old, does it?

Let’s start with the simple facts: Ms. Coulter used this slur against the President of the United States. She called the President of the United States a retard. You don’t have like Obama and you don’t have vote for Obama to know that you show some respect to the man by virtue of the elected office he holds. Maybe they didn’t teach this particular civics lesson at Cornell, where Ms. Coulter went to school, but they taught it at my elementary school in Brookline, Massachusetts, and most people who understand what it takes to hold together this fragile entity called a society understand that you have to show some respect to the office of the President and to the person who holds it. The man was, after all, elected by We The People.

But what’s worse — much, much worse — is that Ms. Coulter cast out a slur just as hateful as the N-word, or kike, or faggot. It’s hate speech. And it’s not just about some nameless, faceless people out there. It’s about intellectually disabled people, it’s about developmentally disabled people, and it’s about anyone with a disability who has been called a retard, or considered a retard, by people in desperate need of a clue.

So let’s put a face on who you’re calling a retard, shall we Ann? Because it wasn’t just the President. It was all the disabled people you decided to slur as well.

Right here is my friend Lydia — my beautiful, loving, kind friend Lydia. This is Lydia, who has autism, anxiety, periodic episodes of depression, and a laundry list of physical diagnoses.  She also happens to love her church, cats, and the color pink, and she writes books, poetry, and music.

That’s who you mean when you use the word retard, Ann. You’re not just talking about some abstraction out there. You’re talking about people with hearts and minds. You’re talking about human beings who love and are loved. You’re talking about me and mine.

© 2012 by Rachel Cohen-Rottenberg