When I joined OHEL Children’s Home and Family Services 17 years ago, one of my first meetings was with a group of parents whose children had a range of disabilities. Although the clinical terms may be depression, bipolar disorder, personality disorder or developmental disabilities, to these parents, they are life-altering states.
I asked them only one question: “What can be done to make your children’s lives better than they are now? Their answer was powerful: “We want our children to have a good home, a good job, a social life.
Just as powerful is what they didn’t say. They didn’t talk about therapy, medication, or access to better mental health. They conceptualized a life for their children beyond treatment and talked about life as you and I want to live it.
These parents’ gestalt was a life for their children as typical as any child. Like an atom breaking into infinite particles, as natural as the evolution of life, theirs was not to deny any opportunities to the atypical person, one who happens to have a disability.
It is not enough for people with a chronic mental illness to have an apartment, a job, a date or a soul mate. It is also the understanding that their illness will occasionally interfere with their life and must be attended to. This may be daily with medication, weekly with therapy or even through episodic hospitalization.
My recent encounter with Mark is a good example of the way in which these parents hope to turn stigma on its head.
Mark is in his 50s. He stops by my office every few months to say hello. He lives on his own and has a steady hourly job with which he is satisfied. We talk about music, his passion, politics and the order of the day. We occasionally have lunch together. For a man with a persistent mental illness, he seems relatively content. In fact, “it’s OK” is a term he’s fond of using.
During the many times I have met with Mark, most pronounced is his trembling hand and constant pursing of his lips to catch the drool from not falling onto his striking red beard. These are all-too-common side effects from long-term use of certain medications to manage mental illness.
On his last visit, Mark looked different. It took me a minute to see it. Knowing I have a good relationship with him, I conveyed to Mark that he looked terrific and that I noticed that his hand wasn’t shaking and he wasn’t drooling.
I found myself looking at him and listening to him without the usual distractions that had been so much a part of him. With a satisfied, self-confident grin he said he was tired of seeing himself in that way too. He felt himself identified by a trembling hand and the constant dabbing of a tissue at his beard. He was tired of this look — the stigma. He sought out a psychiatrist who was using a new medication to treat these side effects.
Mark exuded a newfound self-confidence.
He spoke about his job and even a potential raise. We spent time reminiscing, all without his ever mentioning his disability — a first.
A recent study conducted by St. Patrick’s Hospital in Dublin, Ireland, monitored attitudes toward mental illness in the country.
Results showed a strong belief that those with mental illness were less intelligent. Forty-two percent agreed that being treated for a mental health problem was a sign of personal failure.
Such misinformed attitudes are endemic throughout all countries and communities, and the more insular the community, the more pronounced the prejudice.
An anonymous assessment of 2,500 physicians in England identified only 13% who would choose to seek help from a physician or other health professional for personal depression, citing fear for their own career prospects and professional integrity.
Findings such as these are telling and most alarming — especially when those amongst us who are well informed about mental illness are still so reluctant to be open about their condition.
Stigma is our perception of a problem with the other person we meet, see or hear. Though we may not wish to acknowledge it, we attach a label to that person. He is sick. He has a disability. He is unemployed. She has an eating disorder. He is an addict. He is obese.
The Parkinsonian side effect of a trembling hand can be manifested countless ways. That it appears to us so evidently, albeit silently, is the essence of stigma. We may be careful not to let the words pass through our lips, but our internal brain chatter is sufficient.
The parents with whom I met were essentially saying, “Look beyond what our children require today. Consider your own life in helping to shape theirs.”
Everyday solutions for common human problems presuppose that all people, typical and atypical, seek meaning in their lives. Our collective work is to help find the meaning.