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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

References

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

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

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

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

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

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

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

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

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

© 2012 by Rachel Cohen-Rottenberg

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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 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