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NAMI Advocacy
a Labor of Love

Buffalo News (NY) - 7/2/2012

Lynne Shuster describes herself as the "bad cop" and Mary Kirkland as the "good cop." Together they have led the local branch of the National Alliance for the Mentally Ill for almost three decades.

"When I complain and groan and moan about having too many things on my plate to do, Mary just pats my hand and says, ’There, there,’ and I go back to work," Shuster said.

The two women, who have partnered to lead the volunteer organization for 28 years, are stepping down from their roles at the end of July. Shuster is outspoken and refuses to take "no" for an answer when advocating on behalf of the mentally ill, friends say; Kirkland is a kind-hearted woman who will spend hours on the phone listening to people’s stories and offering advice. Together, the two have worked tirelessly to provide a network of resources for families across Western New York.

The National Alliance for the Mentally Ill is an all-volunteer organization that provides resources and support for families struggling with mental illness. Shuster helped found the Buffalo chapter of the organization, and Kirkland has served as president for more than 20 years.

"I kiddingly say that I’m the president and she’s the boss," Kirkland said.

Shuster and Kirkland, who will be 72 and 82, respectively, this year, say it’s time to pass on leadership of the organization to a younger generation. But both women have been such prominent fixtures in the community that they still expect to receive calls from time to time.

For both women, as with all volunteers, personal experience started their involvement. Shuster’s adopted son, Peter, was diagnosed with bipolar disorder when he was 17. After a decade of struggles, he committed suicide at 27.

Shuster joined an informal support group with 11 other people. After a few years, she said, "We looked at each other and said, ’You know, we’ve been sitting around this table for months, telling the same sad stories over and over -- and it doesn’t get any better.’?"

Members of the group attended a conference in Toronto, where they heard about the National Alliance for the Mentally Ill. They decided to start a Buffalo chapter and raised all of the funding on their own.

The organization has since grown to more than 500 members.

Kirkland got involved soon after the group started, when her daughter Kathleen, the youngest of nine, was diagnosed with a mental illness. Since then, Kirkland’s involvement with the alliance has "made me do things I would never have dreamed I’d do," she said. Her daughter is getting married this year.

Kirkland’s home phone number is available through the organization, and people call her throughout the day to share their stories and to ask for advice on whom to contact and what to say. The conversations can get emotional, she said. "I just had somebody tell me the other day, ’If only I was close to you, I’d give you a big hug,’?" she said. "People very often are tearful."

The organization provides group and family counseling sessions and support group meetings; puts out a newsletter called the Mind Matters with information on mental illness; and helps families navigate the complicated world of hospitals and patient services. It has also served as a resource for mental health physicians and government agencies, which tell families to contact the group.

Speaking with Kirkland led board member Judy Capodicasa to get involved. When Capodicasa’s son was struggling with a mental illness, Kirkland helped Capodicasa through the complicated time.

"When I would have problems, I would call them. They would guide me through exactly who to contact, what to say. And they’ve done that for thousands of people," Capodicasa said.

Shuster describes Kirkland as a "wonderful people person. ... She carries an index of probably 800 names in her head. Not only does she have the 800 names, but she knows their stories, and she connects instantly with a kind of warmth and tolerance and patience."

Kirkland and others say Shuster is a strong-minded advocate, who tirelessly champions the rights of the mentally ill.

Once, when a distraught family called her because a hospital refused to admit their mentally ill son, Shuster said, she showed up at the hospital and fought until the man was admitted.

"It’s been a long slog, but it has certainly had its rewards," she said.

At one meeting, Shuster said, someone told her they once overheard a care provider say, "When my secretary says Lynne Shuster is on the phone, my hand starts to shake as I pick it up."

Friends and fellow volunteers can’t quite imagine the organization without Shuster and Kirkland, who have become the faces and voices of support for families in Buffalo.

Sue and Jerry Keppel have been involved with the alliance for about a decade. Sue is a former board member, and Jerry is board treasurer.

Sue Keppel said the knowledge the two women have built up over the years will be missed, as will their commitment. "Nobody in today’s time is going to do what they’ve done," she said.

The two women have brought in informative speakers to support group meetings, written to legislators about mental health issues and supported Timothy’s Law, which required insurance companies to provide equal coverage for mental health service.

"It’s kind of been like a ministry to them," Keppel said. "They’ve done it all out of the goodness of their hearts."

kronayne@buffnews.com

 
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