Children with Special Needs Are Often Condemned to Inferior Education and Even Incarceration

Reprinted by arrangement with Hudson Street Press, a member of Penguin Random House (USA) Inc., from The Price of Silence by Liza Long. Copyright © 2014 by Liza Long.

With mental illness, stigma comes in many forms, all of them pernicious and destructive. There’s self-stigma: you blame yourself for your child’s illness. Then there’s social stigma: your culture’s norms disapprove of your child’s illness. Mental health providers and special education teachers are often both sources of and victims of stigma. Stigma is a mother and son with bipolar disorder who are “politely” told by their church leader that they should “study the gospel at home.” Stigma is a young man with autism who is relentlessly teased by his high school peers. Stigma is a young mother who doesn’t take her little girl to the playground anymore because she knows the other moms don’t like her daughter. Stigma is a psychiatrist who incorrectly diagnoses ADHD instead of juvenile bipolar disorder because she doesn’t want a child to “carry the burden of a serious mental illness.” Stigma is the special education aide who says to a colleague in the hallway, “These kids just don’t know how to behave because their parents give them anything they want.”

Stigma condemns children to inferior education at best and incarceration at worst. Stigma keeps children from becoming happy, healthy, productive adults. The costs to life, liberty, and the pursuit of happiness—the very foundations of American society—are truly staggering.

The media play a tremendously important role in perpetuating our collective disapproval of people with mental illness: when I asked a group of friends to name the first movie relating to mental illness that came to mind, I got the following list: One Flew over the Cuckoo’s Nest; Rain Man; A Beautiful Mind; Girl, Interrupted; The Three Faces of Eve; The Exorcist; Fatal Attraction; and Psycho. This by no means exhaustive list contains examples of the three biggest misconceptions about mental illness: first, that people with mental illness are responsible for their illness; second, that people with mental illness have childlike, magical experiences of the world; and finally, that people with mental illness should be feared.

The popularity of movies like Psycho and Fatal Attraction illustrates why stigma is still so prevalent in our society, despite the brave and diligent efforts of advocacy groups like the National Alliance on Mental Illness (NAMI) and others. In our mass media–shaped minds, mental illness is the “crazy” knife-wielding man in the shower who seemed like such a nice boy; the poised, attractive woman who can’t take no for an answer—then a young man dresses up like the Joker, opens fire at a Batman premiere, and the national conversation turns briefly and almost hysterically to mental illness. Fear is the heart of stigma.

Before any change is possible, we have to overcome stigma. Self-stigma is often the biggest barrier: parents have a hard time talking about their children in part because they fall victim to self-stigmatization. They are more than willing to blame themselves, and society at large is happy to reinforce that message. And yet we would never think of blaming a child with Down syndrome for her condition, nor would we blame her parents. Harold Koplewicz summed up the problem in his March 5, 2013, comments to a congressional forum on mental illness: “This country has tackled things like cancer, AIDS, and yet people are so ashamed, feeling it’s either their fault or their child’s fault or somebody’s fault. It’s time this nation really speaks up for kids, says this is real, it’s common, it’s treatable.”

Instead, too often, we blame the children and their caregivers. If you want to know what stigma at its worst looks like, consider the chilling anonymous letter delivered to the doorstep of Brenda Millson, a Toronto grandmother of a boy with autism:

Personally, they should take whatever non retarded body parts he possesses and donate it to science. What the hell else good is he to anyone!!!

What right do you have to do this to hard working people!!!!!!! I HATE people like you who believe, just because you have a special needs kid, you are entitled to special treatment!!!

When this horrific missive showed up on the feed of a secret Facebook autism mom support group to which I belong, I reposted the letter to my personal page, adding my own observation that every mother of a child with mental illness or a mental disorder has at some time been the victim of intentional cruelty. My friends were outraged by this letter, yet I received a similar comment on my own blog about Michael’s rages: “I would suggest you take your child to Russia or India and have him lobotomized before he kills one of your children, or yourself.”

And the mental illness stigma needle has scarcely budged since the “stay calm and take a Miltown” era of the 1950s and ’60s. There’s a real perception gap between those who have mental illness and those who don’t: while 57 percent of healthy adults believe that people are caring and sympathetic toward those with mental illness, only 25 percent of adults who actually have a mental illness believe that people are caring and sympathetic toward those with mental illness. It’s no better for children and their parents. One mother expressed her sympathy with my futile attempts to get help for my son: “I have been where you are now. I was the single mother of an autistic child and a bipolar child. My experiences were nearly identical to yours. In the end, I was able to save one child but not the other, and that loss haunts me. What I find saddest, however, is that the responses you are receiving are identical to those I got twenty to twenty-five years ago.”

The resentment expressed by the anonymous Canadian author of the “euthanize him” letter rang true to me: as I mentioned in chapter 1, my own son was the target of a parent campaign to have him removed from an exclusive academic program. The fact is that every parent who has a child with mental illness lives with stigma—self-stigma and social stigma.

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