When a disability is used to help a community

People rarely blatantly discriminate against Lydia Richard, 49, of Milo. The discrimination instead comes in the form of avoidance.

“I find people just stay away from you once they learn you have a mental health diagnosis,” she said. So she is the one making the effort to build awareness and involve those in her community to help others.

Lydia has dissociative identity disorder, formerly known as multiple personality disorder. It’s a mental disorder where different personality states alternately control a person’s behavior. It’s often accompanied by an impaired memory.

The history of Lydia’s diagnosis and life with the disorder is filled with pain. But she has used her experiences to try to shape how others perceive mental illness. She helped start a nonprofit in Bangor called the Advocacy Initiative Network of Maine, which supports mental health consumers across the state. She is the president of Maine Mental Health Connections, which also serves consumers of mental health and developmental disability services, and she is on the protection and advocacy committee for the Disability Rights Center.

But she wanted to do something locally. A hometown is where, as she put it, “people make their progress.” So when she saw a notice in The Eastern Gazette last year about a new group for people with disabilities, she went to a planning meeting held in Dover-Foxcroft. The Mid-Maine Aktion Club, a Kiwanis program for adults with disabilities, had only three members at the time, but it grew by word of mouth. In November the club received charter approval from Kiwanis International.

Lydia, who became the club’s president, spoke publicly about her disorder in order to build awareness and because she wants more people, no matter what type of disability they have, to get involved in the club. So far the group has collected food for the Milo Ecumenical Food Cupboard, organized a benefit concert for Pine Tree Camp in Bath and provided a local child with Christmas gifts. The eight members are now looking for their next project.

“A lot of times, people with disabilities aren’t looked at as people that can give. But we have skills and abilities that a lot of people don’t have because of what we’ve experienced,” Lydia said. Giving to others benefits the members, too. “When the group gets together, and we do something, we have a blast. It takes us away from all the problems that we experience.”

Lydia grew up in Milo and didn’t receive her official diagnosis of major depression and dissociative identity disorder until she was in her late 20s. She finally saw a psychiatrist, she said, because she was suicidal.

“That was what really was the breaking point for me, was this feeling of wanting to die — because I didn’t know what was going on with me,” she said.

It turned out she had been experiencing “alters.” They appear at times of great stress and cause Lydia to lose her memory. “I don’t always know what’s going on,” she said.

At first she didn’t believe her diagnosis. Then she became angry. Then she thought if she could only find the right medication everything would be fine. But she learned along the way that, while medication could take care of some symptoms, it couldn’t solve the problem. Over time she learned ways to step back when her feelings became overwhelming. She set plans for how she would react to situations she knew to be triggers.

“It’s not scary anymore. Through therapy I’ve learned why (alters) exist,” Lydia said. She’s learned to use the situations in which alters arise to address the underlying problem. “There’s a communication that goes on in which I find out … why it is that I’m dissociated.”

It’s that same interaction and communication that she wants to bring to her local area through the Aktion Club. People with disabilities are often viewed as “takers,” she said. She wants to show they have the ability and desire to give.

To get involved, contact Lydia at 478-1046 or lrichard@thenetwork123.com.

Erin Rhoda

About Erin Rhoda

Erin Rhoda is editor of Maine Focus, a journalism and community engagement initiative by the Bangor Daily News.