À risque dans la culture du «normal»

À risque dans la culture du «normal»

oktober 9, 2019 0 Door admin


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Research shows that people with atypical brains are at a higher risk of suicide and self-harm.

Mr. Mooney is the author of “Normal Sucks.”

CreditCreditLeonardo Santamaria

I was a weird kid. I was obsessed with checker-patterned clothing, and for a time I rode a checkered bike, wore checkered Vans, checkered shorts, a checkered shirt and to top it all off, a checkered hat. I loved the television series “Roots” and took to calling myself Kunta Kinte. I would shower only in my socks. I decided one year to pee only in the corner of the extra room in our house. No one noticed, which gives you a sense of the general level of cleanliness in our home. I memorized all the dialogue in “Trading Places” the 1983 movie about class warfare starring Dan Aykroyd and Eddie Murphy that was definitely not for children.

When I was in third grade, I couldn’t sit still, so I spent a lot of each day chilling out with the janitor in the hallway. I struggled with reading, especially reading out loud, so I often hid in the bathroom. Then there was writing. I asked my teacher what seemed like perfectly reasonable questions: Do we really need there, their and they’re? And can’t we just agree when I write “how” instead of “who,” or “who” instead of “how” that he could still get the gist of what I was trying to say?

Eventually I was found to have multiple learning disabilities, attention deficit disorder, anxiety disorder and depression. It was helpful for me to be able to identify the challenges I faced, but the language used to describe me was, and still is, inherently negative. It was clear that in the eyes of society, I wasn’t just different, as my mom liked to say, but deficient. I wasn’t just not normal, I was abnormal. And to be labeled abnormal is to be told that you should be other than you are. Eventually the round peg, made to fit the square hole, breaks.

Sometime in October 1988, during my sixth-grade year, I felt as if I were in the corner of a room watching myself. I started to rub my eyebrow raw and became obsessed with my split ends and would pull out any irregular hairs. I thought I had cancer, and then AIDS, because I found some white spots on my tongue. That year, a teacher assigned us the task of writing a story. I figured this was my chance to prove them all wrong. I wanted to show them that I was more than my speech problem, my chicken-scratch handwriting and my fetus-level phonic awareness.

I went home that day, sat down and tried to write all of the images, sounds and feelings that were swirling around in my head. It didn’t work. But my mom told me to tell her the story and she would write it down. So I dictated a 10-page story about King Arthur and the Knights of the Round Table to my mom. It was my magnum opus. Mom and I were triumphant. A few weeks later, I was summoned to the principal’s office, where I found my mother waiting. The principal proceeded to accuse me of plagiarizing the story. My mom stood by me, defended me and, long after that demeaning incident, continued to support, teach and love me.

But I was devastated. I went home that afternoon and wrote my suicide note. I got a glass of water and a bottle of aspirin. I sat there, feeling nothing. I turned on the light and walked over to my bird Charlie’s cage to say goodbye. He was the size of a Granny Smith apple and had a green body, yellow-tipped wings and black around his eyes like a prizefighter. I found Charlie as a baby with a hurt wing on the sidewalk. He had fallen out of his nest and I saved him, took him home, fixed his wing and loved him. I taught him to talk, and he could say, “Hi, Jon” and “Charlie is a pretty bird.” I took him out of his cage and said I was sorry. He kissed my face and said, “Hi, Jon, hi, Jon, hi, Jon, hi, Jon, hi, Jon.” I put down the bottle of pills. I couldn’t do this to Charlie. He loved me just as I was, and that, for a moment, was enough.

We live in the golden age of diversity, right? I figure if we are all special now, my school experiences, which happened decades ago, would at some point be obsolete, simply a dispatch from the bad old days of the 1980s, a time long ago when everyone listened to Def Leppard and wore stonewashed jeans, when rattails were cool and kids were sorted into “smart” and “stupid” reading groups, and normal reigned supreme. Well, that was naïve, wasn’t it?

Every day, in every community, all around the world, people with differences are demeaned. Whether they have autism, cerebral palsy, deafness, visual impairment, dyslexia, depression, ADHD or something else, they are being treated as abnormal and deficient in school and at work, as well as in families and communities. And there are consequences.

The French theorist Michel Foucault called the cultural systems and institutions that pathologize and seek to remediate differences the “normalizing society.” The normalizing society uses the statistical abstraction of “normal” as its organizing principle. Schools, factories, cities, towns and even families are designed and built not for the reality of differences but on the dream that we could, and should, all somehow, someday be the same. Schools are designed for the middle of the bell curve. The nuclear heterosexual family is solidified as normal; and architecture, city planning, industrial production and product design routinely use and promote impossible body ideals to shape our environment.

As Ann Waldschmidt, a sociologist and disability theorist, wrote in her groundbreaking essay “Who Is Normal? Who Is Deviant?”: “The central means of social control in normalization society is the statistically backed comparative description of people, their behavior, and their characteristics.” This type of society is organized to make us more alike than different, and it hurts.

Research shows that people with atypical brain and bodies are at a higher risk of self-harm. The risk for suicide is high among children with attention deficit hyperactivity disorder, according to a study data published in the Journal of Affective Disorders. A case study that looked at 693 childhood suicide cases across the United States found that 60 percent of children ages 5 to 11 who died by suicide had ADD or ADHD. The rate of suicide in the autism/neurodiverse community is higher than in the general population. Adults with learning disabilities had 46 percent higher odds of having attempted suicide than their peers without learning problems, even when we took into account a wide range of other risk factors. According to the National Bullying Prevention Center, children with disabilities are three times more likely to be bullied than their non-disabled peers. According to a recent study, poverty increases the risk of suicide, and people with disabilities are more than twice as likely to live in poverty.

This is not an individual but a systemic problem. The idea of a “normal” body and mind, based on a narrow continuum of acceptable human variation, banishes atypical bodies and minds. Variability becomes disability, abnormality and pathology. The medical model used to enforce these rules makes variety synonymous with sickness and relegates the social “problem” to the person, not the environment.

We know more than ever about the long-term effects of systemic sexism and racism. But do we fully understand, and condemn, the effects of systemic ableism? Do we even call it that? I don’t think so. In 2001, the United States Supreme Court ruled in Board of Trustees of the University of Alabama v. Garrett that there was no history of systemic discrimination against people with disabilities.

The evidence does not support that misguided opinion. A report by the National Disability Rights Network and the Government Accounting Office reveals numerous cases of abuse in special education; a report by the Ruderman Family Foundation shows that half of police shootings have involved a person with a cognitive or physical difference. Women with intellectual disabilities are 22 times more likely to be victims of sexual violence or rape than the general population. Overall, people with disabilities are substantially more likely than the general population to be victims of abuse and hate crimes.

To make matters worse, the algorithms that drive our digital economy tell us what is normal, and in doing so, push us toward sameness. As the disability scholars David Mitchell and Sharon Snyder have pointed out, this economy sells us products to compensate for our supposed imperfections. These norms power our Fitbits to track our endless quest for bodily improvement. Curated social networks like Instagram create standards unattainable by nearly everyone in real life.

Addressing this crises demands public and governmental support for improved mental health services, a strategy to destigmatize mental and behavioral health challenges, and an aggressive social media regulation to address cyberbullying and hold the platforms that facilitate it accountable.

But that’s not enough. It requires us to call ableism what is: a form of injustice. It requires a cultural transformation driven by a new set of values, an ethic of differences that values all human beings not for how they should be but for who they are.

Differences are fact. Difference is essential. In fact, it drives life on earth. It requires us to include and to love, like my mom did and like Charley did, the round peg, even when it doesn’t fit the square hole.

Jonathan Mooney is a writer, speaker and activist, and the author of, most recently, “Normal Sucks.”

If you are having thoughts of suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255 (TALK). You can find a list of additional resources at SpeakingOfSuicide.com/resources.

New Book:About Us: Essays From The New York Times Disability Series,” edited by Peter Catapano and Rosemarie Garland-Thomson, published by Liveright.

The Times is committed to publishing a diversity of letters to the editor. We’d like to hear what you think about this or any of our articles. Here are some tips. And here’s our email: letters@nytimes.com.

Follow The New York Times Opinion section on Facebook, Twitter (@NYTopinion) and Instagram.

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