In sociology, stigma is defined as something that prevents a person from being accepted into normal society.
But if we look at stigma as arising from the fear of things perceived as unfamiliar and judged abnormal, then we must think of challenging stigma by making the characteristics associated with stigma more familiar and thus less fearful. For me, central to stigma is discrimination and exclusion. The antidote: working with someone as a colleague, knowing such a person as a neighbor and friend.
The hard-fought battle for accessibility, fueled by the Americans with Disabilities Act of 1990, has made jobs and community participation possible. Whereas it is easy to observe the progress that has been made in the realm of physical (observable) disabilities, there has been little progress for those who have been defined as mentally ill; those “crazy people.”
For me, the key to the lack of progress is our failure to use what we know about how to diminish Fear. Horror movie producers utilize a basic principle to increase fear: the dreaded monster is not clearly seen until the climax. If we are given enough time to see the movie monster, familiarity diminishes the required fear of the moviegoer. Throughout history, those of us who have experienced anomalous, extreme mental states, regardless of the causes, have been removed from our communities. That isolation makes re-entry, with the added burden of stigma, a formidable, lifelong task for many of us.
For years I have been disturbed by the various attempts made to extinguish stigma. What I have seen are futile public education campaigns that barely make a dent in the public consciousness. Typically, such campaigns center on education about the nature of mental illness and the current treatments that are in vogue and validated by testimonials. Popular are statements equating mental illness with other forms of manageable illness that can be treated with medications.
Some pundits speak of what a dangerous time we live in. Random, unpredictable violence is attributed to people with mental illness. The media thrives on sensational stories while citizens desperately look for predictability to soothe their fears. The other, the different, become the target. Control, with its illusion of safety, is believed to be attained by identifying, excluding and isolating those projected to be dangerous.
In his book, The Better Angels of Our Nature: Why Violence Has Declined, Steven Pinker, a professor of psychology at Harvard University, makes a compelling argument that statistics show a decrease in human violence. Yet his treatise does little to challenge our heightened perception of lurking danger.
Fear remains high.
I offer my thoughts as to what I believe are keys to more effective approaches in overcoming the exclusion and isolation engendered by stigma.
Inclusiveness is the antidote.
A sign of progress is the increasing valuation of people with lived experience; or, perhaps more aptly, experts by experience. I have been fortunate to be both a psychiatric survivor and a psychologist. In my dual role, I have been privileged to be invited to speak to students and faculty at various universities. While responding to questions I frequently say, “I know that among you there are those who have had experiences similar to what I have spoken about. Wouldn’t it be enlightening if students and faculty could freely discuss their experiences with anomalous and/or extreme states of consciousness?”
Theories and treatments could be evaluated and new ideas would be generated when considered through the lens of those with lived experience. I have suggested that I would not need to be invited to speak if openness was supported, so that the resources already there among students and faculty could inform them. My wish is for lived experience to be valued as a credential, and for a special effort be made by universities to support such students who are in various stages of overcoming adversity.
Last week I attended the American Psychological Association Annual Conference. For many years, I have attempted to support and encourage those psychologists with lived experience to consider being open about their background – that is, if they are in a position to do so. I regret to say that we still remain few in number and those that disclose are usually near the end of their careers. A few of us who are open, along with a law professor, have recently co-authored a journal article surveying discrimination in state licensing laws for psychologists. The article, “State Psychology Licensure Questions About Mental Illness and Compliance With the Americans With Disabilities Act (ADA)” is scheduled for publication in the American Journal of Orthopsychiatry.
Another of my critiques is directed at the oft-cited “remarkable people who have made major contributions.” Anti-stigma campaigns cite famous figures who have struggled with mental illness. Mentioned frequently: Abraham Lincoln, Winston Churchill, Virginia Wolf, Beethoven, Sylvia Plath, Issac Newton, Judy Collins and many others.
My objection: Do we have to be famous with extraordinary talent in order to be accepted? Does one become extraordinary simply by virtue of having recovered or transformed their experience? Do those in various stages need to act super normal with no eccentricities in order to be included?
Perhaps we see here why so many remain “the hidden recovered.” Some years ago I developed a three-hour recovery training module for the New York State psychiatric hospitals. Former patients presented to hospital employees about their experiences and the factors that propelled their recovery journeys. The most profound feedback came from ward staff. Many said they were not aware of what these former patients expressed. Most salient of the comments was: We never see the successes, we only see the failures who are readmitted.
I remain hopeful. Progress is slow. The fight for passage of the ADA was a protracted battle where many heroes put themselves on the front lines. I believe our progress is dependent on more of us accepting the risk of being open and joining in the fight for rights and Justice for All.
I borrow a principle which I believe comes from the Western Massachusetts Recovery and Learning Community, that I put in juxtaposition to the popular “recovery is possible.”
Recovery is PROBABLE
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