"Just Treat Me Like Another Person"
Stigma, Refuge, and Living With Mental Illness
Sky Light Center, a rehabilitative space for adults dealing with severe mental health issues, occupies two conjoined Colonial-era homes on Staten Island, with a backyard where members and staff hold summer barbeques. Members of Sky Light host yard sales for their neighbors, and leave mental health literature outside for the taking. "It's my safe place," says Audrey Levine, who joined Sky Light four years ago.
In a recent photo posted on the organization's Facebook page, she's smiling, her hair pulled back in a ponytail and dark-framed glasses accenting her eyes. Since she was a young child, Audrey has battled mental illness, a shifting enemy that doctors have given a litany of names. "I did not choose this," she says. Her most recent diagnosis, she explains, is "bipolar, schizoaffective, and there was something else--major depression."
Over the years, she's been diagnosed with depression, manic depression, and a form of cyclical depression called cyclothymia--her favorite, she jokes, because she likes the way the word sounds. "You are your diagnosis in the clinical world," she says. "I've had many labels. The only one I dispute is the schizoaffective." She's had to learn to be on guard. Outside of Sky Light, hospital staff have acted differently around her after seeing a list of her medications, or complained in front of her about having to work with psychiatric patients. "People think because we have a psychiatric history we're all going to push someone into a train."
Audrey currently lives in a basement apartment she found through Sky Light's supported housing program. When she's at home, she likes to play computer games like Candy Crush--right now, she's stuck at level 28--and take care of her cats: Shadow, who hangs close by her side, and 14-year-old Destiny Marie, who used to belong to Audrey's sister. Destiny Marie's coat is patterned in black-and-white like a tuxedo, and at 14 years old, she's more reserved. "She's like me. She's kind of shy," Audrey says. One of her friends at Sky Light has a cat who recently gave birth, and Audrey is planning to adopt one of the litter, a rough-and-tumble kitten named Magnus. An avid fan of televised wrestling, Audrey subscribes to the WWE channel, although she doesn't stay up late enough to watch the matches live. She records them at night and watches them in the morning: Monday Night Raw on Tuesday morning, Thursday Night SmackDown on Friday.
Before coming to Sky Light, Audrey was hospitalized three times in two years for cutting herself. Once, six police officers came to take her to the emergency room, appearing all at once inside her apartment. "I'm like, ‘Oh my god,'" she remembers. She was wearing Yankees-themed pajamas, and they asked her about her favorite players. Usually, they would escort her out of her apartment in handcuffs, but this time, they let her leave without them. In the emergency room, she was required to strip down to her underwear, while attendants ran a wand over her looking for concealed weapons like TSA agents at the airport. "When you're in the hospital--it's not that they disrespect you, but they have the madhouse keys. They can say when you walk out the door," she says. Once she was admitted, every aspect of her day was tightly controlled: when she took medication, and how she ate meals. "It's degrading at times," she says. "You feel subhuman, especially in the clinical world."
In the U.S., many patients struggle to find adequate care for their mental health needs, in part due to longstanding stigma about mental illness. Legal attempts to reform the systemic gap between physical and mental health care have been relatively recent, largely targeting insurance companies. Together, the Mental Health Parity Act of 1996 and the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) mandated that if an insurance plan chooses to cover mental health and/or substance abuse treatment, it must be treated equally to comparable services for physical illness. For example, lifetime caps have to be equal for both sets of benefits.
Neither of these acts, however, require that insurance companies cover any mental health and/or substance abuse treatment. In 2010, as part of his landmark health care reform legislation, the Affordable Care Act (ACA), President Obama included a key provision which extended the advances of MHPAEA. To meet ACA standards, insurance plans are now required to cover mental health alongside 10 other "essential health benefits," including vaccinations and maternity care.
In June of 2013, President Obama organized a symposium on mental illness in the East Room, the ornate event space where he had signed the ACA into law three years earlier. "The main goal of this conference is not to start a conversation--so many of you have spent decades waging long and lonely battles to be heard," Obama began in his opening remarks to the crowd, his hands clasped together on the podium. "Instead, it's about elevating that conversation to a national level and bringing mental illness out of the shadows." 1 in 5 Americans, he continued, experience a mental illness in a given year, but less than 40% of those individuals suffering from a mental illness receive treatment. "Think about it. We wouldn't accept it if only 40 percent of Americans with cancers got treatment," he said. "Why should we accept it when it comes to mental health?"
Growing up in Brooklyn, Audrey remembers her mother suffering from depression, but it wasn't something they talked about openly. "It was a family secret," she says. "It was hard back then … now, people are more sensitized, hopefully." Audrey's parents sent her to school at four years old, but she had such strong separation anxiety about leaving her mother that her parents sent her to see a psychiatrist the same year. She doesn't remember much about the visit. "I remember going on the train, and going to see a doctor," she says. It was the first time she was given a diagnosis, but she's not sure what it was. As she got older, she was told that what she struggled with was depression--as a teenager, she visited the clinic at a local hospital intermittently for treatment, stopping her appointments when she felt better. "Things subside. Depression comes and goes," she says.
After her last hospitalization several years ago, Audrey's therapist referred her to Sky Light Center as an alternative to an inpatient environment. "The 27th of this month, it'll have been four years," she says, remembering the exact day she joined. Sky Light is an accredited member of Clubhouse International, an organization that abides by a set of guidelines for psychiatric rehabilitative centers that emphasize voluntary participation and individual dignity. Clubhouses seek to combat the stigma entrenched in many clinical environments. Unlike in a traditional psychiatric facility, members don't adhere to an assigned revolving-door schedule of group therapy and 30-minute psychiatrist appointments. Instead, they stay in the Clubhouse for hours at a time, working side by side with staff to prepare meals in the communal kitchen and complete the daily administrative tasks that keep Sky Light running. "The key to a good Clubhouse is that you don't know which person is staff and which person is a member," says Audrey. Small details distinguish Sky Light from clinical settings she's experienced in the past: staff and members share a bathroom, and eat their meals together. "It makes a difference," she says. "Just treat me like another person."
At first, she came to Sky Light every week day, helping out with administrative work and spending time with one of the first people she met--Sky Light's Program Director, Stephen Signeavsky. "No one believes me, but I'm very shy. I would basically only hang out with Stephen," she says. Soon, she setted into a routine, finding purpose in small tasks: making copies, answering phones, and going to daily meetings between staff and members. "It keeps me on an even keel," she says. She's told all the staff members at Sky Light about her history of self-harm, so they'll know to watch out for warning signs. "I can walk in and someone says, ‘You're not yourself--what's wrong?' Whether I want to acknowledge it or not, they'll notice it."
When Stephen first came to the Clubhouse 12 years ago, he remembers being surprised by its uniquely egalitarian approach. Work spaces are communal and always accessible to members, and he didn't have a designated desk or a door he could shut for privacy if he wanted to take a break. During employment program training, he learned that if a member needed to take a sick day from work, he would show up at their job to cover their shift for them. If they worked at McDonald's, he would spend the day turning over burger patties on the grill in their place. "It's me covering the job so the member, when they're feeling better, can return to paid, meaningful work," he explains. "Everyone's at different levels of their recovery, and we acknowledge that."
When Stephen was in graduate school, he envisioned himself working in management or HR, most likely in a larger corporation. He was in the process of completing his master's degree in industrial and organizational psychology when the World Trade Centers were attacked on September 11th, 2001, and in the aftermath, struggling corporations in Manhattan no longer offered the internships he had hoped to secure. He moved back in with his parents after graduation, and began sending out resumes. When Sky Light offered him a position, he was concerned about the salary, but his parents encouraged him to accept it. At first, he thought he would learn from the training and then move on within two years. "12 years later, here I am," he says.
In addition to Audrey, he's helped many members find stability and employment, including a formerly homeless man who found a full-time job and met his wife through Sky Light. They now have four children together. "Stigma in the mental health field has been ongoing for years, and people internalize that. Sky Light tells them ‘You can go to school. You can get married,'" Signaevsky says. "For me personally, someone just getting out of their house and coming here--that's a success story."
Recently, Audrey secured her second job placement through Sky Light's supported employment program, where she is helping to set up a new thrift shop in the Clubhouse that will be open to the community. She spends her time sorting through clothing and jewelry donated by neighbors on Staten Island, checking their shirts for stains and rips, and pricing handbags. "I don't do well with large crowds. Sometimes I can handle it, and sometimes I can't," she says. Alone in the thrift shop among the racks of clothes, she can put on her favorite music and take a deep breath.
Audrey is also a member of the advisory council for Clubhouse International, and she travels to other Clubhouses across the country to make sure they offer the same safe space she has found at Sky Light. "It's a welcoming environment. You walk in and say, ‘Where has this been all my life?'" she explains. Since she's been a member at Sky Light, Audrey hasn't been readmitted to the hospital. "This place saved my life--the acceptance. No one puts you down because of your psych history," she says. "In my lifetime I would love to see everyone treated the same: black, white, yellow, green, psychiatrically ill, not psychiatrically ill."