At the 2008 convention, I was fortunate to speak with Bob Corolla, NAMI's media director who gave some intriguing reasons why stigma persists in the face of education. This blog entry will examine various forms of stigma, I'll offer my earliest experiences with it, and end with some ideas for fighting it.
According to Bob Corolla:
"The reason that stigma continues to exist now following the turn of the century as opposed to the 1950s is portrayals of schizophrenia and other mental illnesses in the mass media-TV and movies, but also that extends to the advertising industry, even retail products that are at least ignorant if not insensitive to what the real nature of mental illness is.
That kind of massive communication and portrayal makes it very difficult for public education to break through the screening and barriers that most people are exposed to. We're making progress, though. Following the surgeon general's report in 2000, we also saw the premiere of the movie A Beautiful Mind, which was a major breakthrough because it was the first time that a person with schizophrenia was portrayed not only sympathetically but as the hero of a major motion picture that went on to win academy awards.
So there is progress. Stigma Busters [NAMI's program] is viewed as a protest vehicle yet really is more than that because any time you make an initial contact with whatever that source of stigma might be you're at least educating-whether it's a screenwriter or producer-about the real nature of mental illness. Now sometimes they don't listen or they sometimes don't care but at least there's that exposure.
The protest strategy behind StigmaBusters is that in the ideal, you're trying to change people's attitudes but even if you're not changing how a person thinks, you sometimes can change behavior. You can make it embarrassing enough or enough of a problem that they have to deal with it from a public relations perspective.
So that they're going to think twice before they do it again. Now that doesn't change an attitude, it's not the best outcome, but if you can cut stigma at the source, that is a small victory."
Bob Corolla's insights beg the question: shouldn't screenwriters and others know better. Or does stigma sell? Pull back the curtains and raise the blinds on any house in America, and chances are you'll find someone living with a mental illness. I wholeheartedly believe that stigma is the prime culprit in a person not seeking help. He or she doesn't want to be associated with "someone like that," and so they deny their own problems.
The StigmaBusters campaign addresses cultural stigma (entertainment, advertising, retail and other media). Structural issues involves law and policy (e.g. insurance or employment discrimination).
I'll talk now about my own early experiences with stigma. Long before I set the goal of becoming an expert on recovery from schizophrenia, I had a shadow life where my diagnosis was kept secret from others. After a failed drug holiday, I was hospitalized again so I could be stabilized on the medication. When I returned to work at my second job (I had started it two months earlier), everyone knew I had a breakdown and treated me differently. My career was derailed.
That fall, I decided I wanted to try group therapy out. At the time, I would've been better served by a peer support group, yet I knew no one else who was working full-time and in recovery. I found the name of a social worker in the Village Voice classifieds. He offered a free consultation. I showed up directly from work in an Ann Taylor suit, ready for the intake. He felt he had to see me a few more times to form an impression, and charged me for every consultation anyway. I was honest; I told him I'd been in a hospital and was diagnosed with schizophrenia.
At our second meeting, he solved my problem. He said, "Don't you see, you became paranoid because the other teens and neighborhood girls persecuted you in junior high." The third session was his charm: "You do not have schizophrenia. I'll accept you into my group provided you don't tell the others you were in a hospital, at least not at first."
He practiced out of a brownstone on the Upper East Side of Manhattan. I told him I'd get back to him, and silently rose and never went back. I had wound up in the hospital because I was in denial that I was sick. I needed help with my condition, and I wasn't about to keep quiet again.
Four years after this incident, as I found and lost one job after another, I reached out in another way: I joined a women's journal writing workshop that met every Tuesday night for ten weeks. It was July, the anniversary of my second hospital stay. After I had spent the day crying into a phone booth to one of the only friends I'd kept from in the system, I pulled myself up and drove to the house where the women met. I wrote about what happened to me. I read aloud the passage in my beautiful expressive voice, and they were shocked. "I would've never known," was the response echoed in the room. It was 1996. I wondered what image did come to mind when they saw a person with schizophrenia in their heads. I had long forgotten I first disclosed my illness to strangers 12 years ago. The memory came back to me as I began composing this article.
Fast forward to 1998 when my first psychiatrist died of a heart attack and I was referred to a shrink who operated out of a basement room with concrete walls and barely a 40-watt bulb. His first words were, "So, life is beautiful?" I said, "Yes, I'm living at home and working and going to school. I expect to obtain a masters degree shortly and move into my own apartment."
"Don't you think if you lived at home, there would be supervision?" he asked.
I looked at my watch. Only five minutes had passed, and he had made a judgment of my capabilities. I bolted from the room, and dialed up my health insurance to get a referral to a doctor who practiced five blocks away from where I worked in Rockefeller Center.
This guy was marginally better. When I asked him if he thought people could recover, if someone could do as well as I had, he harrumphed. "Ah well," was all he said. It sounded like he was choking on a dead fish in his mouth.
So there you have it-cultural and institutional stereotypes abound. Interestingly, when I did join a group therapy with a warm, empathetic woman, the insurance wouldn't cover it so I had to pay out of my own pocket. The $150 each month was a lot of money on a salary of $25,000 considering I had to pay rent, car insurance and buy food and clothing, plus pay for my commute to and from work.
To quote Billy Bragg, a songwriter from the 1980s, "There is a power in a union," and if you think one person alone can't change things, think again. You and an army of others can make change happen. I'm proud to say that mental health parity is now the law in New York State, so I'm able to see my therapist once a week and there are no limits on the number of visits per calendar year. I wrote numerous letters to elected officials, and thousands of people like me, acting alone and together, rose up in a battle cry that was heard loud and clear.
The key to fighting stigma is to expect to be treated with dignity and reach out to tell your story, as appropriate, to those who would benefit from hearing it. Finding your voice and using it is a healing energy. At the NAMI convention, I acted as a roving reporter, asking attendees the question, "How can we best fight stigma?" They weren't shy, and I'll close with their replies:
"I would tell someone to say, ‘I live with schizophrenia' instead of ‘I'm schizophrenic.'"
- Michael B. Solomon, Glenside, PA
"Join a NAMI group and educate people through In Our Own Voice and other programs."
- Donna, Reno, Nevada
"Education through public service announcements and ads in newspapers."
- Marshall, Northern Virginia
"Knowing the facts about mental illness."
- Lynn, Lakeland, Fla.
"To be honest about it, to say it."
- Hanne, Oxford, Mississippi
My suggestion? Be brave, be yourself. Believe in your greatness.
To join the StigmaBusters campaign or keep abreast of their efforts, log on to www.nami.org, and click on "fight stigma."
Published On: July 11, 2008