(Note: This is an update and adoption of a piece that first appeared in October 2009)
This first full week in October is being celebrated as Mental Illness Awareness Week (MIAW). In celebration, well meaning mental health advocacy organizations are busy hosting events to reduce the “stigma” of mental illness.
But I don't believe there is ‘stigma’ to having a mental illness.
I believe serious mental illnesses, like schizophrenia, are real biologically based disorders that are no ones fault. Serious mental illness or ('consuming mental health services') is not, “a mark of shame or discredit”, or “a mark or token of infamy or disgrace”. There’s no stigma to being mentally ill the same way there is no stigma to being “black”, “gay”, “short”, ”tall”, “lefty”, “righty”, inny, or outy.
There is discrimination. But that’s another story. And ending it takes other strategies. As J. Rock Johnson, a former head of the National Alliance on Mental Illness (NAMI) consumer council once said, “the most stigmatizing thing we do is talk about stigma.&rdquo
I think the efforts to reduce stigma are actually harmful because they are accomplished by diverting attention away from those who need our help the most: the most seriously mentally ill.
The anti-stigma campaigns are premised on the belief that the key to reducing ‘stigma’ is to convince the public that “the mentally ill are just like you and me” and “with proper supports can recover and become productive members of society”. Those two facts are true, if you’re talking about the higher functioning 25 percent of Americans who have a “diagnosable mental disorder”. Or the 50 percent who believe they have a mental health issue. Hey, who doesn’t?
But what about the others? The three percent to five percent of Americans who are the most seriously mentally ill -- like those suffering from untreated schizophrenia or treatment-resistant bipolar disorder, the very people who often need our help the most? And what about the homeless psychotic, eating out of garbage cans, sleeping in cardboard homes, and living with festering wounds under layer after layer of filthy clothes because they have a mental illness than makes them unable to help themselves?
Trying to gain sympathy and resources for mental illness, by only displaying the highest functioning individuals, is like trying to end hunger by showing the well-fed. And new research shows it doesn't work. There is no less 'stigma' today than when these efforts started.
Not everyone agrees with me. Some people believe mental illness is a myth. And there are those who believe strongly there is stigma to being mentally ill. The Alternatives 2010 Conference-a meeting of people with experience in the mental health system-who I would think would be the first to believe there is no stigma to being a person with mental illness, had at least eight workshops on stigma.
The Surgeon General also believes there is stigma to having a mental illness. "The Surgeon General's Report on Mental Health" cited stigma as
the most formidable obstacle to future progress in the arena of mental illness and health.
But in later sections, the Surgeon General discusses why stigma exists:
The answer appears to be fear of violence: people with mental illness, especially those with psychoses, are perceived to be more violent than in the past.
It is well documented that only a tiny percentage of mentally ill people engage in violence. But they tend to be the most seriously mentally ill.
The report notes that in the 1950s, when most seriously mentally ill individuals were hospitalized, only 13 percent of the public associated mental illness with violence, while in the 1990s, 31 percent of the public made this association.
It seems clear from the Surgeon General's report, as well as from research studies, that little progress will be made in decreasing stigma until we address the issue of violence. To do so is currently considered politically incorrect by some people, who claim that addressing this issue will cause additional stigma. Yet, if violence is the main cause of the stigma, our failure to address it simply ensures that stigma will continue indefinitely.
So whether one believes that there is stigma to being mentally ill; or discrimination against the mentally ill, the answer remains the same: let's help the most seriously ill.