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CP Photo: Jared Wickerham
When people ask “What are you doing?” It is difficult for Delaine Swearman to answer. This is because the subtext of the question is usually about employment.
Nowadays she might say, “I do archery, I’m a dragon boat paddler, I’m a cat mom, I’m an aunt.”
She is definitely busy. She is an admired speaker and writer in Pittsburgh. And she’s part of a team that travels around the world evaluating and improving mental health rehabilitation centers called Clubhouse International.
But it’s not paid work – which many consider to be the single most important sign of adult success. And that’s why she was ashamed in the past, because she says that, like many others, she “tied my identity to work”.
Swearman, originally from Somerset County, has two diagnoses of mental illness and autism. In addition to touring international clubhouse facilities, she spends many days with her colleagues at the Sally and Howard Levin Clubhouse in Squirrel Hill. It looks like a recreation center. Swearman writes on the computers there and participates in activities like yoga.
It’s a supportive environment in which she can thrive and help others. She doesn’t have to explain that full-time employment didn’t work out, even though she did a master’s degree as a medical assistant.
“I was able to do my own work,” she says. “I couldn’t handle the full-time environment and it really affected my mental health.”
Many people with mental illness have difficulty finding employment. In 2014, the National Alliance on Mental Illness reported that about 80% of people receiving public mental health services in the United States were unemployed. After Swearman left her job, she avoided situations for a while where she might be asked what she had done for a living.
“What does a person with a mental illness say when he is not employed? IM a nobody? Am I a burden to society? ”Schwörer says. “When you say, ‘I’m on a disability,’ you have an invisible disability, so people will ask, ‘Why? What’s wrong with you? You have two legs, why don’t you work? ”
She says that when she felt ashamed of any mental illness, she kept silent about the abuse and inequalities she and others experienced. She says she didn’t want to comment because it would come out.
“It took me a long time to let go of this past,” says Swearman. “In order to thrive and develop a new identity for myself, to stand up for myself and to be successful where I am now, I had to let go of that.”
Letting go of the past also included dealing with an autism diagnosis when you were 30. By then, the years of confusion about their own behavior, seeing themselves or being treated differently without knowing why, had taken their toll.
Swearman writes about it for Pittverse Magazine, a publication by People with Autism Spectrum Disorder. In an essay in the winter 2019 edition, she listed experiences related to autism that affect mental health. The list includes “social isolation, loneliness, the feeling of being disconnected, of being ostracized and bullied, of misunderstanding one’s own motives … the feeling of being overwhelmed by the expectations of being ‘normal’.”
Swearman says that as a child, she tried to mimic peer behavior and feign interest in other people’s musical tastes. It is not uncommon. In 2018, The Atlantic magazine published an article entitled “The Struggles of Women Masking Their Autism: By ‘camouflaging’ their condition, many women on the spectrum learn to adapt – and risk mental harm”. Swearman was one of those interviewed in the article based on studies of women with autism masking symptoms.
“Camouflage is often about a desperate and sometimes unconscious struggle for survival,” says Kajsa Igelström, assistant professor of neuroscience at Linköping University in Sweden, in the play. “Relationship and career gains are often associated with high costs, including physical exhaustion and extreme anxiety.”
When Swearman, now 42, started talking about stigma and unfair treatment of people in her community, she made some personal progress. She wants the same for others.
When you speak up about your diagnosis privately and publicly, she says, “not only are you making connections with other people, but you are also advocating your community.”
“I’ve seen Delaine excel in the clubhouse by ensuring that individuals are involved in decision-making, inspiring new people to learn skills, and she’s always the first person to sit down and make someone feel to be welcome, ”said Joseph Herbick, clubhouse director.
She even became “the cover girl of the clubhouse brochure,” according to Swearman, she says with a laugh. It shows how much more she accepts herself than she did in the early days of her diagnosis.
“People with mental illnesses need to be seen and treated and feel like people with equal rights because we are people with equal rights,” she says.
This story was co-published with Unabridged Press and funded by the Pittsburgh Media Partnership and All-Abilities Media – both based at the Center for Media Innovation at Point Park University.