Every month, a group of teenagers gathers in Bloomington for pizza and conversation. For the first half hour at least, they catch up with junk food and in-jokes. But the chatter only lasts so long. The group — PACER Center’s Youth Advisory Board on Mental Health — is laser-focused on their mission: To advocate for the rights of teenagers and young adults with mental illness.
Board members, who range in age from 13-18, have all been diagnosed with a variety of mental health challenges. The PACER board provides them with an opportunity to work on leadership skills and self-advocacy, as well as a forum where they can discuss what it feels like to live in a world where certain behaviors are deemed “normal” or acceptable, and others are actively discouraged.
“These are kids who cycle in and out of hospitals, who have been in multiple school placements,” said Renelle Nelson, PACER Center children’s mental health and EBD project coordinator. She helps organize the board’s activities. “These are kids who have a huge range of disability needs and even communication abilities. The beauty of this board is that it is a safe, accepting place for them. They are just awesome about supporting each other, and they are working together on important issues. ”
One of the issues board members often discuss is how hard it can be to explain what life is like for a young person with a mental health challenge. This spring, after much debate, the group decided to write, produce and star in a music video designed to debunk common misperceptions about mental illness. By appearing in their own production, they hoped to address the stigma and bullying that they so often face — and to show that there are real kids behind the stories, stereotypes and statistics.
With the video, the group “wanted to be their own voice at school and in the outside world, boldly advocating for the rights of young people with mental illness,” Nelson explained. And speaking up makes a difference, she pointed out: “If a peer intervenes in a bullying situation, the chances that the bullying will happen again drops significantly. We feel strongly that when they speak up and show others how to stand up for their peers, teens can be a real force around decreasing stigma about mental health challenges.”
The Youth Advisory Board video, set to Sara Bareilles’ hit, “Brave,” features board members holding cards that list facts about mental illness and disprove common misconceptions; advice on how youth, teachers and parents can to help young people with mental illness; and personal stories about life with a mental disorder. It premiered in August at the annual PACER Symposium on Mental Health.
The video was well received by the symposium’s 1,500 attendees, Nelson said: “Everyone there was deeply touched by the message.”
Next week, the video — and the advisory board — will be featured at the PACER open house for families. And in April, the board will be guest speakers at Mount Olivet Lutheran Church’s mental health fair and resource day.
“The youth will show their video and then do a panel,” Nelson said. “They like to talk about the issues and answer audience questions. They are teens that are really driven, and they are in the thick of their mental health needs. What they’ve put together here is really impressive and they’re excited to show it off.”
Established in 1978, PACER, a training and information center for parents of children with disabilities, was one of the nation’s first disability-rights organizations. Today the Bloomington-based nonprofit is an internationally respected leader in disability-rights advocacy.
“We think of ourselves as the mothership of parenting information centers,” Nelson said. “We are a founding organization, and we probably have the biggest and most expansive projects. Minnesota is really lucky in that regard.”
In the beginning, PACER’s advocacy focused on children with physical disabilities; by the mid-1980s, the organization had expanded their services to include children with emotional and behavioral disorders.
Though prospects have improved for children with mental health concerns in the last 30 years, Nelson explained that many parents still feel a great deal of shame around raising an “imperfect” child. “Nobody wants to discuss the reality of mental illness in children,” she said. Children are expected to be born without flaws, so parents whose children differ from the norm often report that they feel blamed by society for their children’s disabilities.
“If your child has a mental illness, you get the feeling that it must’ve been caused by what you ate or drank while you were pregnant,” she said. “It must’ve been how you raised your child. It must’ve been something you did wrong. The stigma is so great that people don’t want to accept the fact that most forms of mental illness are out of our control.”
At PACER, Nelson explained, parents learn that all children are perfect, and all deserve our love and advocacy. The members of the advisory board are a wonderful example.
“It’s always a challenge when you work with teenagers,” she said with a laugh, “especially teenagers with a variety of abilities. But these are absolutely brilliant kids. This entire project was conceived and driven by them. I was just on the sidelines watching them create.”