Monday, October 6, 2014

Singing to End Stigma

This week, forget the ice bucket challenge and think karaoke!

My son has bipolar disorder. Note: he is not bipolar. He has a serious mental illness, which he prefers to define as a "mental difference." But he wants the same things any kid his age wants: friends, a chance to score a goal on the soccer field, good grades, top rankings in Halo. With the right treatments and supports, he’s been given a chance to reach those goals.

“If people meet me first and get to know me, then they find out later about the bipolar, it’s no big deal,” he told me when I asked him how stigma affected him personally. “But when they hear bipolar first, they think, ‘Oh no! He’s a bad kid!’ And I have to work that much harder, if I get a chance at all.”

In a series of “mom chats” with my friend Janine Francolini of the Flawless Foundation, I asked mental health advocate Ross Szabo, who manages his bipolar disorder successfully, what he would tell my son about living with mental illness. You can watch his response here. Ross stressed the importance of self-compassion. I think he’s right: above all else, people who struggle with mental illness (or as my son likes to call it, mental “differences,”), have to develop a lot of compassion for themselves, because they often don’t get compassion from others. And as his mother, I can attest to the fact that parents don’t get much compassion either: when your child is in a psychiatric hospital, no one brings you a casserole.

One depressing fact: even though anti-stigma campaigns have made people more aware that mental illness is a brain disease, those campaigns have thus-far failed to budge the stigma meter long term. I think that both stigma and the resultant discrimination against people who have mental illness are the direct consequences of our society’s inhumane decision to replace mental institutions with another, worse kind of institution: prison. Treating people who have mental illness by sending them to prison, or even to “mental health court,” reinforces the idea that mental illness is a choice or a character flaw. We would never treat people who had a cancer diagnosis by sending them to jail.

A few months ago, the ALS ice bucket challenge was all over my Facebook feed. I was challenged, and I refused to participate. Not because I’m afraid of a little cold water (I will neither confirm nor deny that I have occasionally enjoyed a post-hike au naturel dip in some of Idaho’s lovely and bracing alpine lakes). Not because I don’t think that ALS is a serious disease that deserves our attention, or that I shouldn’t personally contribute to the cause.
My book The Price of Silence about parenting a
child with mental illness is available at
independent bookstores like Iconoclast Books.

I didn’t contribute because you never see things like ice bucket challenges for mental illness, to fund treatment before tragedy. But this week, my kids and I decided to participate in the Children’s Mental Health Network Karaoke Challenge, issued by Linette Murphy, a fellow mom and advocate. I am fortunate to call Scott Bryant-Comstock, CHM Network director, a friend, and I have been honored to participate in a series of dialogues about HR 3717 and how we can fix our broken mental healthcare system.

I’m also planning to use every social media channel I can this week to join my friends in fighting stigma. “When it comes to mental health, silence is not golden.” This is the theme of a story-sharing, stigma-busting campaign led by the International Bipolar Foundation and other groups to fight the stigma that affects people who have mental illness. Starting Monday, October 6, use the hashtags #BustTheStigma and #SayItForward to share your stories of living with mental illness and working toward mental health. 
Because the Price of Silence is still far too high for children, families, and communities.