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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

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

Where Are the Elders with Autism? Reflections Upon Reading Fred Pelka’s What We Have Done
Nov 8th, 2012 by Rachel Cohen-Rottenberg

Following is my third and final critical annotation of the semester.

Before I began reading Fred Pelka’s What We Have Done: An Oral History of the Disability Rights Movement, I’d expected that, in order to keep myself from drowning in dry historical detail, I’d have to pick and choose my way through its 600-plus pages. I was pleasantly surprised, then, to find myself reading the book into the wee hours of the morning as though it were a novel. What We Have Done combines an exhaustive rendering of historical events — the who, why, what, when, where, and how of the disability rights movement — with first-person accounts by the people who played leading roles in it. An independent scholar and the author of The ABC-CLIO Guide to the Disability Rights Movement, Pelka artfully weaves the voices of disabled activists through his historical narrative, giving form to the principle that underlies the disability rights movement: Nothing about us, without us. The result is a work that covers the framing of disability as a civil rights issue from the founding of the National Federation for the Blind (NFB) and the American Federation of the Physically Handicapped (AFPH) in 1940 through the passage of the Americans with Disabilities Act (ADA) in 1990.

For me, the most compelling material in Pelka’s book concerns the institutionalization of disabled people. I have a personal interest in this subject: my great-aunt Sarah, who was autistic and had cerebral palsy, was incarcerated in Massachusetts state institutions for most of her short life and died of tuberculosis in the Foxborough State Hospital in 1934, at the age of 25. Placed in institutional care at the age of eight, Sarah was forgotten for generations until I discovered her on a census form 75 years after her death (Disability and Representation 2012). I now have a passion for bringing the conditions of her life out of the shadows and honoring her as an autistic and disabled person. I am always shocked, then, to hear people say that autism is an entirely new condition that didn’t exist in past generations. When I hear such things, I feel as though my great-aunt has been relegated to obscurity a second time.

In reading Pelka’s book, though, I found a wealth of historical information that helps to explain exactly why autistic people like my great-aunt Sarah were invisible in their day and why their lives are still invisible now. Central to our cultural forgetting was the eugenicist argument that disabled people were a physical and moral threat to society; this belief resulted in their segregation and institutionalization. One of the reasons that institutionalization became the only option for many was that, until 1975, disabled children did not have a legally protected right to attend the public schools. Thus, many of them were placed into institutions in which abuse, squalor, and disease made their already vulnerable lives all the more fragile, and from which few emerged, except in death.

One of the people who has been most vocal about the purported impossibility of autistic people existing in large numbers before the current generation is Anne Dachel, media editor for the organization Age of Autism. Along with her colleagues, Ms. Dachel believes autism to be a recent “epidemic” caused by vaccination (Age of Autism 2012). She claims that because one doesn’t find a great many elders with autism in our nursing homes, autism as we now know it did not exist in past generations. In a blog post this past July, Ms. Dachel challenges us to explain where all the autistic elders are:

PLEASE SHOW US THE MISDIAGNOSED, UNDIAGNOSED 40, 60, and 80 YEARS OLDS WITH AUTISM. I don’t mean ones with what could be termed high functioning or Asperger’s. I don’t mean autistic adults like the ones they supposedly found in Great Britain who were able to answer survey questions. I want to see the people in our nursing homes and institutions who display the same signs of classic autism that we see in so many of our children. I want to see adults who are non-verbal, in diapers, and flapping their hands endlessly. I want to see autistic adults who’ve endured years of the seizures, sleep disorders, bowel disease and life-threatening allergies that so many of our autistic children have. I want to see adults whose history includes regression—adults who were born healthy and were developing normally until they suddenly and dramatically lost learned skills, started stimming and lost eye contact. This is what countless thousands of children with autism have gone through. SHOW US THESE SAME ADULTS. (Anne Dachel: Autism and the Media 2012)

Of course, the idea that someone could go to a nursing home as an elder implies that the person was once a part of a community. It is ironic, then, that Ms. Dachel is looking for people born between 1930 and 1975 — years in which disabled people, far from being integrated into their communities, were ruthlessly segregated from society, denied the right to an education, and consigned to a “disability gulag,” where they underwent enormous suffering, deprivation, and abuse (Pelka 2012, 49).

In order to understand why one doesn’t find large numbers of autistic adults in our nursing homes, one must begin by noting the degree to which disabled people were incarcerated and otherwise kept out of public view for much of the twentieth century. In the early part of the century, the eugenicist notion that disabled people were responsible for all the problems of society put disabled people in state institutions (Pelka 2012, 9). People with disabilities were considered a social evil that would destroy society just as disease would bring destroy a body (Pelka 2012, 11). They were therefore quarantined, kept away from nondisabled people, and stripped of their right to travel freely and to associate with others. As attorney Tim Cook explains:

[I]n virtually every state, in inexorable fashion, people with disabilities — especially children and youth — were declared by state lawmaking bodies to be unfitted for companionship with other children,’ a ‘blight on mankind,’ whose very presence in the community was ‘detrimental to normal’ children, and whose ‘mingling… with society’ was ‘a most baneful evil.’ Persons with severe disabilities were considered to be ‘anti-social beings’ as well as a ‘defect…[that] wounds our citizenry a thousand times more than any plague.’ In conclusion, then, ‘persons with disabilities were believed to simply not have the ‘rights and liberties of normal people.’ (Pelka 2012, 11)

Until the 1960s, when autism was finally defined as a condition distinct from psychosis and schizophrenia (Fombonne 2003, 1), autistic people like my great-aunt Sarah were misdiagnosed with mental illness. In fact, Sarah had diagnoses of both intellectual disability (she was diagnosed as a “moron”) and “dementia praecox,” the old term for schizophrenia (Disability and Representation 2012). People like her would have had no hope of escape from an institution — not into a nursing home, not into a group home, and not into a private home. As Pelka notes: “Because the consensus of ‘expert opinion’… was that people with disabilities, particularly those labeled ‘mentally retarded’ or ‘mentally ill,’ should be institutionalized, having a disability often meant lifelong imprisonment” (Pelka 2012, 48).

One of the social conditions that made institutionalization possible was a series of laws, in almost every state, that kept children with disabilities out of the public schools; such children, according to attorney Thomas K. Gilhool, were considered “uneducable and untrainable” (Pelka 2012, 139). Moreover, laws in some states even allowed school superintendents to take children out of their homes, against the will of their parents, and place them in institutions (Pelka 2012, 139). These institutions represented a powerful lobbying group that, according to Pelka, “actively impeded the development of community-based services and integrated public school education” (Pelka 2012, 49). Such a situation did not find remedy until the 1971 consent decree issued in the case of PARC v. Pennsylvania, which found that all children have a right to a free public education (Pelka 2012, 26). This court case ultimately resulted in the passage of the Education for All Handicapped Children Act of 1975, the precursor to the Individuals with Disabilities Education Act (IDEA) (Pelka 2012, 137). Thus, one did not see many children with autism in the public schools until after 1975 because, until then, they did not have a legal right to access a free public education. The only alternative for many children was institutionalization.

Once institutionalized, children lived in conditions that made it unlikely that they would ever survive to old age or leave the facility. The late Gunnar Dybwad, an attorney and, from 1957 to 1963, the executive director of the National Association for Retarded Children, had extensive knowledge of what befell disabled people in state care from the 1930s through the 1960s. In Pelka’s book, he describes the nightmarish conditions in state institutions, including the overcrowding, the stench of human feces, the unbearable levels of noise, and the food unfit to eat (Pelka 2012, 50-51). No one made an effort to separate children from adults (Pelka 2012, 51), and sexual abuse was rampant (Pelka 2012, 52). No oversight from state or federal agencies was in place (Pelka 2012, 51), resulting in situations in which “no one… was safe and secure” (Pelka 2012, 53) and in which children were “brutally beaten” (Pelka 2012, 53). Parents were not allowed into the facilities to see the living conditions of their children (Pelka 2012, 52) and had no idea of what was happening to them. For decades, health professionals countenanced the misery at these institutions, leading Dybwad to note that “it might be appropriate if [mental retardation professionals] started each annual meeting with a session where they would confess their sins. Because they all knew what was going on, and they never did anything about it” (Pelka 2012, 51).

Such conditions lasted well into the 1970s. Richard Bronston, a physician who worked at the Willowbrook State School and Hospital on Staten Island describes a situation of “[w]retchedness and suffering and insanity and inhumanity” (Pelka 2012, 180). The residents at Willowbrook, he remembers, lived in an environment in which they experienced rampant disease, serious injuries, constant noise, rashes from caustic floor cleaners, burns from falling asleep against the radiators, and amputations due to fungal infections (Pelka 2012, 176-178). Physical assault, sexual abuse, and pregnancy due to rape were common (Pelka 2012, 179). Far from having the opportunity to live to old age and graduate to nursing home care, residents at Willowbrook were “statistically more likely to be assaulted, raped, or murdered than in any other neighborhood in New York City” (Pelka 2012, 175). In fact, toward the end of his tenure, Bronston oversaw a ward with “a death rate that was nine times the death rate of the city of New York” (Pelka 2012, 179). It is unlikely that most autistic adults with the symptoms of which Ms. Dachel speaks — “seizures, sleep disorders, bowel disease and life-threatening allergies” — could survive to old age in such conditions (Anne Dachel: Autism and the Media, 2012). If Ms. Dachel would like to know where these adults are, I invite her to visit the cemeteries on the grounds of former state institutions. She will very likely find them there.

When I was a child growing up in the 1960s and 1970s, the only disabled children I knew in the public school system were diagnosed as “mildly mentally retarded.” I never knew any nonverbal autistic children. I never knew any children who used wheelchairs. I never knew any blind or deaf children, and I never knew any children with acute mental illness. These children were invisible to me not because they did not exist, but because most of them existed elsewhere, in a world apart. Some went to separate schools for disabled children, some remained at home, and many suffered in institutions. “Out of sight, out of mind” was the paradigm by which disabled people in past generations were segregated and incarcerated. Let us not forget them now.

References

Age of Autism. “A Letter from the Editor.” http://www.ageofautism.com/a-welcome-from-dan-olmste.html. Accessed November 6, 2012.

Anne Dachel: Autism and the Media. “The Boston Globe covers up autism.” http://annedachel.com/2012/07/25/the-boston-globe-covers-up-autism/. July 25, 2012. Accessed November 6, 2012.

Disability and Representation. “Reclaiming Memory: Searching for Great-Aunt Sarah.” http://www.disabilityandrepresentation.com/2012/10/30/reclaiming-memory-searching-for-great-aunt-sarah/. October 30, 2012. Accessed November 6, 2012.

Fombonne, Eric. “Modern Views of Autism.” The Canadian Journal of Psychiatry (September 2003): 1-4. http://ww1.cpa-apc.org:8080/publications/archives/cjp/2003/september/guesteditorial.asp.

Pelka, Fred. What We Have Done. Amherst, MA: University of Massachusetts Press, 2012.

© 2012 by Rachel Cohen-Rottenberg

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

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

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

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

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

I was saddened by everything I found.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No more Aunt Sarahs.

Not now. Not ever.

© 2011, 2012 by Rachel Cohen-Rottenberg

Making a Mockery of Disability
Oct 12th, 2012 by Rachel Cohen-Rottenberg

My friend Karla Fisher is a Senior Program Engineering Manager at Intel, an autism educator, the General Manager of a professional sports team, the mother of two thriving adult children, and the owner of the excellent Facebook resource Karla’s ASD Page.

On October 17, Karla attended the Autism & Asperger’s Syndrome Conference in Eugene, Oregon. Karla had worked with the sponsors of the conference and, as a successful autistic woman, had written a piece for one of their books. She was especially excited about the prospect of attending the talk given by Tony Attwood.

I’m tempted to say that Karla was disappointed in Attwood’s talk, but disappointed doesn’t begin to cover it. In fact, what Karla saw and heard that evening was deeply offensive to her. Following is her narration of the events; the speaker she refers to is Tony Attwood.

The session began well with the speaker talking about ASD versus NT as a culture. I was happy to hear this opening. I also know that I had some influence on this perspective as I had given this to him privately in email and also through at least one of the clinicians that he works directly with. From there, however, the cultural perspective thing sort of went downhill. The speaker was dynamic, quick, fluid and exceedingly witty. Humor was his main way of reaching his audience and he delivered well judging by the audience who was laughing several times each minute. He was very good overall as a speaker. The problem was that he used humor about autistic people primarily and he spoke ONLY to the NTs in the audience despite the fact that he knew we were there.

An example of this is when he talked about how he knows when a Mother (or Father) of a child is autistic during the session where he delivers the message about autism diagnosis for their child. He said, “I have a good picture of how it looks when an NT Mother hears this message…” (and here he does NOT describe what that looks like but assumes that I will just know so I sit there with a blank picture) Then he goes on to say that he knows the parent is autistic when he sees the following… He stiffens his body up then and puts on his robot voice and he says, “Okay, so let me see if I got this. I need to see about OT, ABA, understand about sensory integration….etc…).” As he is going through this I am thinking to myself that YES, this is the good way to approach the information that there is a diagnosis. Facts will help the child and this person was seeking facts… But my thoughts are disrupted by an audience who is in full belly laughter at this person’s imitation of an ASD person. I found myself wondering what was so funny. Then I wondered if I said anything if it would not be turned around on me as not having humor. My heart grew heavy as I realized that these people were supposed to understand and accept me. That these are the people who are committed to making my life better.

Ironically, I was wearing the same black hoodie that I wore earlier in the week when I was interviewed and accepted into this key job at one of the largest high tech companies in the world. And yet the goodness of my new position and all the praise and accolades by my coworkers and friends was completely lost in the moment that the room burst into laughter when this professional speaker made fun of the “ASD uniform” (the one which I was clearly wearing).”

If I may summarize: Attwood was mocking autistic people at an event for parents and professionals who wanted to learn more about how to help autistic people. To put his statements in the proper context, Attwood knew that Karla was in attendance. In fact, he made specific reference during his talk to the fact that there were several autistic people in the room. He knew they were there. And yet he engaged in such mockery anyway.

I know what some of you are thinking: “Oh, Rachel. You’re overreacting. Mockery is much too strong a word. It was just good-natured fun.”

No. Good-natured fun is between people of equal social and political power. When you have a position of greater power and privilege, and you satirize people who comprise a stigmatized, vulnerable, and misunderstood minority, it’s not good-natured fun. When you parody the speech and the body language of people who are considered social burdens, walking tragedies, and quasi-humans, it’s mockery, and it drove a tough 50-year-old woman who plays contact football to tears. You don’t do it no matter who you are or where you are — especially when you are making fun of people whom the world feels it perfectly acceptable to laugh at anyway. With your power, you put the imprimatur of respectability on such behavior. In this case, not only does Attwood have all the privilege that comes with being white neurotypical man; he also carries a great deal of authority in the world of autism. So when he makes fun of autistic people by grotesquing a stereotype, he sends the message that autistic people are here to be laughed at, to be mocked, and to be parodied simply for being who we cannot help but be.

By way of analogy, could you imagine what would happen if a well-known Protestant minister, in a public religious forum, satirized the difference between Christian prayer and Jewish prayer? What if such a minister gave as an example of Christian piety the Lord’s Prayer, delivered in a sober and restrained voice, and then, in contrast, put on a yarmulke, tzitzis, a fake beard, and sidecurls, and started rocking back and forth madly, mumbling incomprehensibly in a sing-song voice, in order to elicit raucous laughter from the congregation? He’d never hear the end of it. The Anti-Defamation League of B’nai Brith would be all over it. The network pundits would hold forth. Internet memes of every variety would appear. Someone would start a petition demanding an apology and his immediate resignation.

But none of that happens in the world of disability. Because the average person does not think that anything is wrong what-so-fucking-ever with making fun of disabled people. Because the average person thinks of disabled people as broken and therefore worthy of scorn. Because it’s still acceptable to laugh at physical and cognitive difference. Because disabled people are considered damaged goods ready for the trash heap, and anyone who thinks they’re worthy of reclamation and respect ends up having the same mockery cast upon them.

One of the most telling things about Karla’s description of Attwood’s performance was that he did not satirize what happens when non-autistic, neurotypical (NT) parents receive an autism diagnosis for their child. There is a stereotype of what happens, and since he was in the business of exploiting stereotypes for cheap laughs, he would have been free to exploit that stereotype as well. He could have parodied the NT autism parent as becoming hysterical, as believing the world was ending, as losing all hope. That’s the stereotype. But he didn’t. And do you know why he didn’t? Because the NT parents in that audience would have risen up in all their glory and shouted him down. And rightly so. No one wants to see their fear and pain for their disabled children mocked, even if they have journeyed past that fear and pain. People would have been irate, and some of them would have stomped out of the conference hall in protest.

And yet, somehow, it didn’t occur to him that the autistic people in attendance would feel the same way. He didn’t think about the fact that Karla Fisher would be sitting there in her favorite black hoodie, driven to tears.

But you know, this isn’t about Karla’s hurt feelings. It’s not about one person. It’s about her hurt being a signal that something in that room was very, very wrong — that the power relations were awry, and that the flow of empathy and respect were going in directions that favored some and mocked others. It wasn’t just about that room and it wasn’t just about Karla. It was about a world in which it is still acceptable to mock disabled people, in which it is still acceptable for people to laugh uproariously at it, and in which it is still acceptable for people to dismiss it by saying it’s just all in good fun and there was no harm meant.

Perhaps there was no harm meant. It doesn’t matter. What matters is that harm was done. Harm is done by such behavior every single day — on school playgrounds, on television, in workplaces, in families, on buses, and in classrooms — for public amusement and for the infliction of private anguish. And when someone with authority engages in it, it only empowers people to go out and do it some more.

It’s not just autistic people who care about this. It’s disabled people. It’s the parents and friends of disabled people. It’s all of us.

This disrespect in the thin guise of humor has to stop — for the disabled people who are now here, and for the rest of humanity vulnerable to becoming disabled, through illness or injury, in the blink of an eye.

The fates may ordain that one day, Dr. Attwood, you are the person with a disability, struggling against the ignorance and prejudice of the world, and that you have to sit in a room and listen to someone mock your voice, your movements, your perspective, your pain, your struggle to speak. I hope you never have to go through that kind of disrespect. I wouldn’t wish it on anyone.

But imagine how you would feel. Just imagine it. And then stop contributing to a world in which it happens.

© 2012 by Rachel Cohen-Rottenberg

Using Disability For Propaganda Purposes
Oct 10th, 2012 by Rachel Cohen-Rottenberg


Source: Facebook

I happened across this graphic on the Facebook page of an anti-vaccination group called the Vaccine Information Network (VINE). The page propagates the twin falsehoods that a) vaccines don’t work and b) vaccines are linked to rising autism diagnosis rates and a purported epidemic of other conditions.

Now, no one has ever denied that severe vaccine reactions occur, but these are rare. And I certainly support the idea of acknowledging those who have been harmed by these reactions. But I do not support propaganda that vastly overstates the number of these injuries as part of a campaign to lower vaccination rates, and I most certainly don’t support propaganda that uses images of disabled people to do it.

Of course, the graphic on the VINE page does not only use images of disabled people for a cause that isn’t ours. No. It does much more. It uses images of disabled people to engender fear. It uses these images to portray disabled people as pitiful, frightening, dangerous, worthless, and without agency. It represents disabled people as diseased and broken. It uses the worst stereotypes of disability as tragedy and social burden and passive victimization. And it does this for the sake of its own agenda, without any consciousness at all of the potential for harm of such stigmatizing images.

Shame on you, VINE. Your ideas about vaccination potentially endanger the public health, and you dehumanize and demean disabled people in the process of propagating those ideas. Time to find yourself a new moral compass. The one you’re using just isn’t working.

© 2012 by Rachel Cohen-Rottenberg

Representing Difference as Pathology: An Example from Simon Baron-Cohen’s The Science of Evil
Aug 23rd, 2012 by Rachel Cohen-Rottenberg

I find it very painful to write about the work of Simon Baron-Cohen. I’ve done so extensively in the past, and this spring, I decided to take a break from it. But there is a passage in his latest book, The Science of Evil: On Empathy and the Origins of Cruelty, that has haunted me since I read it last year, and I feel the need to explore why. I’ve critiqued the book before, but somehow couldn’t touch this passage until now, and I think I understand why: The passage doesn’t simply speak volumes about how others view autistic people in particular, or disabled people in general, but constitutes a particularly telling example of the ways in which our society pathologizes difference and blames people outside the norm for the treatment we receive.

In Chapter 4: When Zero Degrees of Empathy is Positive, Baron-Cohen makes the extreme, pejorative, and wholly incorrect assertion that, for people on the autism spectrum, “Other people’s behavior is beyond comprehension, and empathy is impossible,” and concludes that autistic people have “zero degrees of empathy” (Baron-Cohen 2011, 117). He attempts to mitigate the impact of these statements by saying that autistic people are “zero-positive” because, in his estimation, our systemizing skills enable us to build such things as elaborate moral systems (my elaborate moral system is built on empathy, thank you, but I digress) and cutting-edge technology (for which I have no aptitude whatsoever, thank you, but I digress) (Baron-Cohen 2011, 122-123). Despite this apparent attempt to redeem us from the lack-of-empathy stigma, Baron-Cohen presents the story of a 52-year-old man named Michael, who has Asperger’s Syndrome, as representative of the lives of autistic people, and he characterizes Michael as almost robotic: controlling, anti-social, utterly logic-minded, and incapable of understanding other people’s feelings or of having any emotional responses of his own (Baron-Cohen 2011, 96-100).

To illustrate his view that autistic people are on the zero end of the empathy scale, Baron-Cohen begins by writing about Michael’s childhood. I find two things rather fascinating about Baron-Cohen’s rendering: 1) His descriptions of Michael’s childhood do not illustrate Michael’s lack of empathy, but the lack of empathy of the children around him, and 2) the wholesale lack of empathy on the part of “normal” children goes entirely unremarked. He writes of Michael:

Even as a child he found social situations confusing and stressful. He didn’t play with other children in the playground, was never invited to their birthday parties, was not picked to be on their team. He avoided the playground by going to the bottom of the playing field at primary school — alone — and counting blades of grass. In the winter when it snowed, he became obsessed with the structure of snowflakes, wanting to understand why each one was different. Other children in his class couldn’t understand what he was talking about because in their eyes all snowflakes looked the same. Although the teacher had told all the class that every snowflake is unique, it seemed that he was the only person in the class who could actually see the small individual differences in the snowflakes. The other children in the class teased him, calling him “snowflake brain.” (Baron-Cohen 2011, 97-98)

It’s difficult, at first, to grasp all that is wrong with this passage, because Baron-Cohen is uttering entirely prejudicial things in a very kind and reasonable tone. Let’s start at the beginning: He suggests that a sign of Michael’s lack of empathy is that he didn’t play with other children, wasn’t asked to their parties, and was the proverbial last kid picked for the team. Baron-Cohen seems to take it entirely for granted that Michael is at fault, and that it was quite natural that the other children would reject him because of his as-yet-undiagnosed disability. He gives not the slightest nod to the idea that perhaps Michael didn’t play with the other children because they themselves were unempathetic — because they would not tolerate his confusion and stress, because they rejected him based on his difference, because they shut him out from every birthday party, and because they didn’t want him on their teams. After continual social rejection, what exactly is wrong with a child running to the other end of the playing field alone and amusing himself as best he can? Counting blades of grass is not a normative response, but that doesn’t make it wrong; in fact, I can certainly understand why a stressed-out autistic kid who is being rejected for reasons he can’t fathom would try to calm himself with a counting ritual. Given the other possibilities for dealing with wholesale social rejection — lashing out in anger at others or doing harm to oneself — an obsession with grass seems to me an entirely non-retaliatory response, and says quite a bit about Michael’s gentleness. Not surprisingly, given the purpose of his narrative, the author never remarks upon this gentleness.

What I find most heart-wrenching, however, is the story of Michael’s fascination with the unique structure of each snowflake, and the ways in which the other children respond to it. Michael’s attentiveness to details that most people miss, and his love for the small and intricate beauty of the natural world, are deeply moving to me. The other children do not see what Michael sees and they do not understand his fascination, but Baron-Cohen does not tar this lack of understanding as a lack of empathy, despite the fact that he considers Michael’s inability to see what other children see, and his lack of interest in what gives them happiness, as prima facie evidence that Michael has an empathy disorder. I’m not sure on what logical basis a scientist could make such a subjective, one-sided, prejudicial assessment, but then again, it’s passages like this one that long ago caused me to give up on the idea of objectivity altogether.

Perhaps the most distressing part of the entire passage is the way in which Baron-Cohen assesses the children’s response: He writes that they “teased” Michael by calling him “snowflake brain” (Baron-Cohen 2011, 98). I take issue with Baron-Cohen’s use of the word “teased.” The children were not teasing Michael; they were calling him names and laughing at him. Teasing is good-natured fun between people of relatively equal power. There isn’t a hint of equal power here, and there is nothing good-natured about making fun of a beautiful thing that brings joy to an isolated, rejected kid. At best, several other children laughing at their defenseless classmate constitutes harassment; at worst, it’s bullying. Anyone who has ever been laughed at as a form of dismissal and exclusion knows exactly what I’m talking about. These are the kinds of microaggressions that accumulate to create self-doubt and self-hatred in those who are the targets of them. But Baron-Cohen does not seem to consider laughing at a vulnerable kid evidence of a lack of empathy in the “normal” children. In fact, he seems to imply that if Michael had any empathy for his classmates, he would have known better than to talk endlessly about snowflakes.

While Baron-Cohen’s much-cherished and erroneous belief that autism is an empathy disorder is the reason for the inclusion of this story in his book, the framing of the story is indicative of a much larger problem in writing about disability and other forms of difference: Non-normative people become responsible for our own social rejection. The accusations launched at Michael and, by extension, at us — that we’re incapable of “normal” human feelings and that we’re trapped in our own worlds — could just as easily be launched at those who reject us. How many “normal” people have enough human feeling to befriend and understand non-normative people? How many “normal” people are trapped in their own “normal” worlds, without any consciousness of what it means to be non-normative? The accusations of lack of caring and lack of engagement adhere to the ones who are different. Those in the majority are simply acting “normally” by doing all the things that, when non-normative people do them, are considered evidence of pathology.

These kinds of accusations are a form of victim-blaming that have no place in a civilized society. That people who consider themselves objective engage in it is an indication of how deeply entrenched a habit of mind it is.

References

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

© 2012 by Rachel Cohen-Rottenberg

Bearing Witness: The Impact of Media Misrepresentation
Aug 4th, 2012 by Rachel Cohen-Rottenberg

Trigger warning: Contains a quoted example of disability hate speech.

I am finding it difficult to begin this piece.

It’s not that I can’t find the words. When I’m writing, I can almost always find the words. It’s that what I want to write about is painful almost beyond words.

In the wake of Joe Scarborough’s uttering the falsehood that autism is linked to mass murder and his erroneous statement that most mass murderers are autistic, well over 11,000 people signed a petition demanding a retraction. To date, Mr. Scarborough and MSNBC have still not seen fit to fulfill their journalistic obligation of setting the record straight. Autism Speaks put out an absolutely useless statement that did not, in any way, refute Mr. Scarborough’s remarks; the organization might as well have remained completely silent. Only the Autistic Self-Advocacy Network, the Autism Society of America, and the Autism Society Canada spoke up in protest.

In the wake of these failures of conscience, people in the autism and autistic communities have been left to deal with the fallout. And yes, there has been fallout. I have been talking with autistic people, autism parents, and allies about this issue for nearly two weeks, and the constant refrain I hear is, “We are afraid of what will happen to us, to our children, to our loved ones, and to our friends.”

Like them, I have feared the impact of Mr. Scarborough’s words. And then, last Monday, one week after the Morning Joe broadcast, my fears were realized. I found the following on the Facebook page of my friend and colleague Karla Fisher, who an autism educator on the autism spectrum and the general manager of a professional women’s football team in Oregon:

This weekend I hosted my football team at my farm for a camp out. They asked me questions about my autism work and I told them that autistic people grow up to be lawyers and doctors and teachers and janitors and Moms and…. I was uninterrupted by one of the girls who said, “And mass murderers”. I asked her if she was kidding. She was not. EVERYONE thought Holmes is autistic and that link was connected very clearly in that room.

This is real life folks and real bad for all of us.

I don’t have enough to words to describe how disturbing I find this story, but I can tell you why I find it so disturbing: Karla’s teammates know her, and they know that she is autistic. Karla is very open about it, and her teammates provide all manner of accommodations in order to be inclusive of her. They consider her a friend. They respect her as an athlete. But she was standing right in front of them, and what mattered more was a media representation of autism than the reality of Karla’s life and being. The disconnect is terrifying — as is the fact that someone would say such a thing to an autistic person, anywhere, without any consciousness of the hurt it would cause.

The truth of the statement was taken entirely for granted. The utterance of it was acceptable.

No one said a word.

But there is more. On August 2, ten days after the Morning Joe broadcast, my friend and colleague Lynne Soraya, who writes a blog for Psychology Today called Asperger’s Diary, received a comment that can only be described as hate speech. It came in response to a piece that she wrote in April called Stigma and the ‘Othering’ of Autism. The commenter took the time to find a four-month-old post in order to comment on the Colorado shooting and express the opinion that all of us on the spectrum should die:

“Neurodiversity”? F*ck you! You have no right to tell me that ‘tards are people if I don’t want to believe that. Grow up and stop believing in fairy tales, nerd.

Hey, one of you DnD faptards just shot 72 people in a movie theater, and 15 of them DIED. Jimbo the Joker Holmes has “special rights” because he’s an “emotionally sensitive” neuroscience geek who probably gets “excited” by Batman/Robin slashfic? He wants to see his brain light up, give him a special seat with ol’ Sparky!

I hear there’s a new movie out about you f*ckwits that someone else can have a free-for-all with: It’s called Eat Sh*t Die. Tagline: Read. Follow. Repeat.

Needless to say, given its content, the comment has now been taken down. But the message is clear: The writer believes James Holmes to be autistic, that autistic people are not human, and that autistic people don’t deserve to live.

In the space of a week, two of my friends have encountered people who believe that autism predisposes people to mass murder. Two people in my own circle of friends. I have not scoured the Internet looking for this information; it’s happening to people I know. How many more have had this experience, but are too afraid or in too much pain to speak up?

I have been aware of the stigma of autism for a long time, and much of my work on autism and empathy has been driven by the desire to dispel the myths that plague us. The idea that someone would think that I am not an empathetic person has been the source of enormous pain to me, but it is as nothing compared to having now been stigmatized with the mother of all stigmas. The lack of safety that I feel cuts right through me. Perhaps this stigma will never rise up to greet me personally. Perhaps it will rise up tomorrow. Perhaps it will rise up just when I’m starting to feel comfortable and welcome in a group of people. I don’t know when it will rise up, and that is what is so dangerous and so vicious about stigma — it is entirely unpredictable.

I’m sure that there will be people who will pass off my feelings by saying, “Oh, autistic people are always fearful. It’s just part of the condition.” They will tell themselves such a convenient lie only because they do not want to face the reality that we are fearful because we live in a world that not only scapegoats us and maligns us, but remains silent when it happens. They will tell themselves such a story because they want to ignore the fact that, when these things happen, we stand up for ourselves, but very few stand up with us. Most people would rather flee stigmatized people than run the risk of being stigmatized by association.

Over the past two weeks, as I’ve felt this fear permeate my being, I’ve realized that I have a choice. I can either let the fear make me fearless, or let it make me hide.

I choose to be fearless. It doesn’t mean that I’m not afraid sometimes. It doesn’t mean that I don’t feel the gravity of the situation. It means that I don’t let the fear stop me. It means that I take the fear and transform it into courage and power.

I’m not sure anything can fully repair the damage done by Mr. Scarborough’s remarks. His words went out to a half million people, and have been passed on by millions more. There is no way to reach every one of those people and make this wrong right. But conscience demands that people speak up. Joe Scarborough, and MSNBC, and Autism Speaks may remain silent. But autism parents, autistic people, allies, friends, and loved ones will keep on speaking up. And we will put them all to shame.

© 2012 by Rachel Cohen-Rottenberg

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