Disability and Representation » Disability slurs

Ableism on the Left is Still Ableism

Rachel Cohen-Rottenberg — Fri, 15 Mar 2013 19:11:06 +0000

If you consider yourself politically progressive, chances are that you firmly believe that racism, classism, misogyny, homophobia, anti-Semitism, Islamophobia, and all other forms of bigotry have no place in political discourse or civil society. As a fellow progressive, I wholeheartedly agree.

So why, oh why, is ableism perfectly fine with you? Why, oh why, do you find it perfectly all right to engage in bigotry against disabled people for the purpose of your political agenda?

May I share a representative example? Consider the following graphic, which was posted to a Facebook page called The Republican Party- Is Corruption, Greed & Lies and The Real Evil Empire.

Source: Facebook [The graphic consists of a black-and-white photograph of former president Ronald Reagan sitting with one foot resting on a round table. The table has two stacks of paper on it; some of the pages are draped over the stacks. Behind him is the front of a house and two leafy trees. The text reads: "Closed Down Mental Institutions. Got Shot by Nutjob. Karma."]

Now, for what it’s worth, I’m willing to believe that you mean no harm. I’m willing to believe that, despite your progressive credentials, you are blissfully unaware of the bigotry you carry against disabled people. In fact, I am more than willing to believe that, despite your progressive credentials, you have no idea what ableism is.

Allow me enlighten you.

Ableism is the belief that nondisabled people are worthier human beings than disabled people. Ableism is the belief that nondisabled people should have a different set of rights than disabled people. Ableism is the belief that disabled people should be segregated, patronized, sneered at, laughed at, abused, and dismissed.

But it’s more than a belief. It plays itself out in systemic injustices — in high rates of unemployment, in high rates of poverty, and in high rates of abuse. It plays itself out in exclusion — social exclusion, economic exclusion, and architectural exclusion. It plays itself out daily in the ways in which disabled people become metaphors for social ills and our culture’s deepest fears.

In others words, it plays itself out just as any other form of bigotry plays itself out — as a series of assumptions, as a set of structural inequities, and as a barrage of microaggressions that take place every hour of every day. And as is true for any other form of bigotry, engaging in ableism while meaning no harm is not a defense against actually doing it.

The graphic you posted is ableist. Why?

Because calling a mentally ill person a nutjob is ableist.

Because implying that mentally people are all violent offenders is ableist.

Because suggesting that mentally ill people who have committed no crime should be incarcerated is ableist.

Because allowing comments in response to this graphic like “Ooh! Ooh! I’ve got one! What’s Reagan’s favorite vegetable? James Brady!” without calling them out is ableist.

Wake up, my fellow progressives. You can’t root out bigotry in this world while engaging in it. You ought to know that.

Scapegoating Schizophrenia: Paul Steinberg’s Shameful New York Times Op-Ed Column

Rachel Cohen-Rottenberg — Thu, 27 Dec 2012 12:12:44 +0000

The scapegoating continues.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

References

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

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

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

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

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

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

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

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

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

Scapegoating in the Aftermath of the Sandy Hook Shooting: Yes, It’s Really Happening to Us

Rachel Cohen-Rottenberg — Wed, 26 Dec 2012 05:00:14 +0000

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.

It’s Happened Again: Apparently, It’s Let’s Publicly Defame a Family Member By Comparing Him to Adam Lanza Week

Rachel Cohen-Rottenberg — Fri, 21 Dec 2012 18:00:37 +0000

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

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

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

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

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

…

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

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

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

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

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

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

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

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

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

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

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

Sources

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

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

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

Guest Post: A Letter to Elisabeth from the Mother of an Autistic Son

Rachel Cohen-Rottenberg — Fri, 21 Dec 2012 04:00:49 +0000

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

Rachel Cohen-Rottenberg — Thu, 20 Dec 2012 02:54:39 +0000

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.

When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat

Rachel Cohen-Rottenberg — Sat, 15 Dec 2012 15:31:14 +0000

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.

The R-Word and Why It Matters: The Case of Jenny Hatch

Rachel Cohen-Rottenberg — Sun, 04 Nov 2012 22:04:15 +0000

Jenny Hatch and Kelly Morris

The Internet was ablaze with outrage two weeks ago when Ann Coulter saw fit to call the President of the United States a retard, and when, in an interview with Piers Morgan, she dismissed the concerns of disabled people, our loved ones and, well, anyone with any moral awareness at all by suggesting that retard is just another word for loser. When Mr. Morgan countered that using the word as a pejorative implies that disabled people are less than worthy, Ms. Coulter argued shamelessly that no one calls disabled people retards anymore.

How this woman has a public platform anywhere outside of a soapbox in a public park is beyond me.

I’m sick of Ann Coulter. You’re sick of Ann Coulter. The only person who isn’t sick of Ann Coulter is probably Ann Coulter. So I can understand it when people say we shouldn’t keep talking about Ann Coulter’s use of the R-word, because it just gives her the attention she craves. I can understand the impulse to ignore her, believe me, but it’s not going to solve the problem. Hate speech is hate speech, and it has power. Ignoring Ann Coulter may starve her of attention, but it’s not going to starve the word of its power. It’s not going to stop hate speech from wreaking its havoc.

Let’s see what happens when the word retard becomes synonymous with the word loser. Let’s see just how much people lose.

—

Jenny Hatch is a 28-year-old Virginia woman with Down Syndrome. Until this past August, Jenny was working, going to church, and integrating herself fully into her local community of Newport News, where she had lived all her life. She has now been placed under the temporary guardianship of Jewish Family Service (JFS) of Tidewater in a group home in Portsmouth, many miles from all that is familiar to her, and against her clearly expressed wishes to remain in the community and to live with her friends and employers, Jim Talbert and Kelly Morris.

As though these violations of her civil rights were not enough, Jenny has had to endure more: Her temporary guardian has confiscated her computer and her cell phone, has kept from her job and from her church, and has denied her contact with Jim and Kelly. In violation of her rights as a citizen and as a human being, Jenny is being stripped of the right to use her voice, to associate freely with others, and to have her preferences respected.

Over the past week, I have been working with Jim and Kelly on a Change.org petition to prevail upon Bill Hazel, the Virginia Secretary of Health and Human Services, to restore Jenny’s rights and to bring her home. In the process, I have become very familiar with the details of her story.

According to a WAVY-10 news report by Andy Fox, Jenny began working in Jim and Kelly’s thrift store in 2008. Jenny has also been a lifelong member of the local Methodist Church, worked on local political campaigns, and was well-known and well-loved in town. In an October 22 article in the Daily Press, Joe Lawlor reported that, until this past August, Jenny was a working, thriving member of the community:

She worked part-time at Village Thrift stores in Newport News and Hampton, about 20 hours a week. She had her own bank account, did her own laundry, can read and write and use social media on the Internet, cook simple meals and take ‘two showers per day,’ according to her friends.

So how did Jenny come to lose everything?

In a statement on the Care2 Petition Site, Jim and Kelly explain that, in January of 2012, Jenny told them that her mother and stepfather had asked her to leave the home she shared with them. She briefly went to live with someone who was never home and where she did not feel safe. In March of 2012, while riding her bicycle, Jenny was hit by a car. Her injuries required back surgery, and she remained in the hospital for a week. Because Jenny’s mother and stepfather were not willing to care for Jenny when she was discharged from the hospital, Jenny had nowhere to go. At that point, Jim and Kelly took her into their home to care for her during her recovery and began the process of putting services in place.

The battle that ensued has resulted in a nightmare for Jenny and for those who love her.

Jim and Kelly have stated that the local Community Services Board (CSB) told them that it would not provide a Medicaid waiver to help keep Jenny in the community unless she was homeless. To get the services to which Jenny was entitled by law, Jim and Kelly surrendered her to the CSB. They considered the surrender to be purely pro forma and fully trusted that Jenny would return to their home with services in place. Instead, the CSB placed Jenny in a group home. Jenny was traumatized. Several times, Jenny made very clear her desire to leave and to return to Jim and Kelly’s home. In response, the facility staff abrogated Jenny’s civil rights by taking away her cell phone and her computer, and by telling her that she could not use the group home’s telephone.

On the Justice for Jenny Facebook page, Jim and Kelly explain the details of what transpired next:

They cut us off completely from any communication with Jenny and Jenny to us or her co-workers. At this point Jenny still had the legal right to make her own decisions. Once Jenny spoke with Stewart Prost, a Human Rights Advocate with the Dept of Behavioral Health, he got involved and Jenny was now able to contact us once again. Jenny begged us to “please get me out of here” … We asked and pleaded with the CSB to place her in Newport News or Hampton where she could return to work and be close to the community that she loved. The case worker informed us that this “was her final placement.” We asked her why they are not trying to get her closer to everything she knows and we were told that they could no longer talk to us about Jenny. Even though Jenny had signed papers with the CSB giving permission for them to share information with us they still refused and blocked us out.

Jim and Kelly found an attorney for Jenny named Robert Brown, who was able to get Jenny free of the group home:

Jenny called Mr. Brown and asked him to help her. Mr Brown went to meet with Jenny to evaluate if she was competent to sign a power of attorney making us as agents. After the power of attorney was signed on August 6th she told the lawyer that she wanted to go home and Mr. Brown advised the case worker that Jenny was leaving.

Jenny returned to live with Jim and Kelly at their home. Shortly thereafter, Jenny’s mother and stepfather, who did not want Jenny in their home, filed a petition to place Jenny under state guardianship. At that point, although Jenny had not been ruled incompetent to make her own decisions, the court gave JFS of Tidewater temporary guardianship. JFS put Jenny in another group home, where she remains, cut off from communication with her friends, cut off from her work and her church, cut off from everyone she knows.

Jim and Kelly’s worst fear is that Jenny will feel that they have forgotten her.

—

The guiding principle of the disability rights movement is “Nothing about us, without us.” Jenny’s wishes are clear, but they have been ignored. According to the article in the Daily Press, Jenny’s self-advocacy at the court hearing granting temporary guardianship to JFS resulted in her removal from the proceedings:
She attempted to speak for herself at a hearing in Newport News Circuit Court on Aug. 27, but was shut down, according to court transcripts:

“I don’t need guardianship. I don’t want it,” Hatch said. For interrupting the proceedings, Circuit Court Judge David Pugh had her removed from the courtroom.

After a new hearing in which the judge maintained the temporary guardianship order, Jenny could be heard wailing outside in the street. According to the same article:

After an Oct. 11 Newport News Circuit Court hearing that maintained Jewish Family Services temporary guardianship over Hatch and kept her in a group home, Hatch held onto a street sign outside the courthouse, screaming and crying that she wanted to return to the couple’s home, Talbert and Morris said.

And in an interview with WAVY-10 News later in October, Jenny quite clearly stated her wishes:

I am sad because it’s heart breaking, and I want to be with Jim and Kelly.

According to the law, it is the responsibility of state agencies and professionals to provide Jenny with the support to live independently in the least restrictive setting. When the Supreme Court ruled against the state of Georgia in Olmstead v. L.C. and E.W., justice Ruth Bader Ginsburg penned the decision of the court, saying that Title II of the Americans with Disabilities Act requires public agencies to provide services in the community whenever possible:

In the Americans with Disabilities Act of 1990 (ADA), Congress described the isolation and segregation of individuals with disabilities as a serious and pervasive form of discrimination. 42 U.S.C. § 12101(a)(2), (5). Title II of the ADA, which proscribes discrimination in the provision of public services, specifies, inter alia, that no qualified individual with a disability shall, “by reason of such disability,” be excluded from participation in, or be denied the benefits of, a public entity’s services, programs, or activities. §12132. Congress instructed the Attorney General to issue regulations implementing Title II’s discrimination proscription. See §12134(a). One such regulation, known as the “integration regulation,” requires a “public entity [to] administer … programs … in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” 28 CFR § 35.130(d) (emphasis added)

For many disabled people, living independently does not mean being able to do everything without assistance. It means having the support in place to maximize independent choices, opportunities, and freedoms. That support isn’t happening in the case of Jenny Hatch, and its absence ought to send a chill wind through everyone. Everyone is one illness, one injury, one accident, one twist of fate away from being treated like a second-class citizen.

Disability isn’t just a medical issue. It’s a civil rights issue. It’s in everyone’s best interest to recognize it as such.

Please don’t turn away. Please sign the petition at Change.org demanding justice for Jenny, and share her story widely on all of your social media, blogs, and sites.

Let’s restore Jenny’s rights. Let’s bring Jenny home.

More on Making a Mockery of Disability

Rachel Cohen-Rottenberg — Sat, 27 Oct 2012 17:20:50 +0000

I was planning to move on from the issue of Tony Attwood’s mockery of disabled people, but in the comments section of my last post on this issue, Karla provided more details about other parts of his presentation. One in particular grabbed my attention, because I think it’s such an excellent example of everything that is wrong with mocking disabled people. Karla writes about Attwood’s words:

He made 1 joke about Britts and 2 about NTs. Other than that it was all out laughing at autistic people….

At one point Tony talks about a married ASD couple. He talks about how they are in their house at night quietly reading and the neighbor stops by to bring them some nice snack and introduce himself (<—- here the NT neighbor is set up as the “good” guy offering gifts and introduction). Then Tony gets into his “acting mode” and gets wild eyed and starts to freak out as he explains… The ASD couple are quickly running through the house turning off the lights and ducking behind the chairs. Tony ducks behind the podium to act out the bit. (<—— sets ASD couple up as the assholes at worst, a stereotype at best) At this moment the entire room is laughing validating that this behavior is NOT okay by any sort of social standard.

Let me be clear: Attwood does good work on other fronts, but this kind of performance, coming from a person in the center of the culture about people at the margins of the culture, is offensive.

Let’s look at what’s being mocked here: a need for quiet and rest. For an autistic person to be quiet at night, after a long day of social pressure, sensory stimulation, and overcompensation, is an adaptation to a disability and a form of self-care. A lack of this kind of self-care results in stress, physical pain, exhaustion, burnout, meltdowns, and depression. I can attest from long experience that it is an absolute necessity to have time alone and in quiet to recharge. It is exactly the same as a diabetic needing to test his or her blood sugar regularly, or a person with cerebral palsy using a wheelchair in order to conserve energy.

How is the exercise of self-care in the face of disability something to laugh at? Should able-bodied people make fun of diabetics testing their blood sugar? Of people with CP using a wheelchair? Of people emptying their catheter bags? How is any of that open to mockery by those who are not disabled?

Let me put it to you very simply: My senses and my neurological system work hard, every day, doing things that “normal” people take for granted. Going into a crowded store is work. Walking in a noisy downtown area is work. Hearing is work. Speaking is work. I barely even notice how much work it is, because it is my normal. I have always worked this hard at it. It’s my reality. It’s not a question of willpower, of mind over matter, of somehow taking a deep breath and making it less work. It’s the nature of my disability. So wanting to be left alone after a long day of more sensory and neurological work than any able-bodied person can possible imagine is not a sign of willful selfishness or an act of social deviance for an able-bodied professional to mock at an autism conference. It’s a sign of understanding how to take care of my mind and body. And that’s all it is.

My husband understands these things. When he wants to chat and I say, “I’d rather not talk right now, because I’m spent,” he doesn’t laugh at me. If the issue can wait, he says, “No problem.” If it’s an emergency, of course, all bets are off. Most people will push past their limits in an emergency as much as they can. But wanting to chat about the presidential debates, like a new neighbor wanting to chat over a snack, is not an emergency.

How people can defend or rationalize mocking such things is beyond me. I’ve understood how wrong it is for as long as I can remember. But then again, I’ve been a minority person all my life. I’m not sure that a lot of people in the majority, who take respect for granted and haven’t had to face this kind of treatment, can understand it as easily.

But that’s no excuse for not listening when we speak our minds on it. It’s no excuse at all. When minority people say, “Stop mocking us,” you just stop, even if you don’t completely get it, even if you need to think on it, even if it’s inconvenient. You stop because you’re potentially hurting people, and the people you’re talking about know a great deal more than you do about what your words mean to their lives.

So Who are You Calling a Retard, Ann?

Rachel Cohen-Rottenberg — Tue, 23 Oct 2012 21:58:21 +0000

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.