When those with mental disabilities speak for themselves

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November 3, 2003 // UPDATED 11:06 am - April 30, 2007
By: Sarah McKenzie
Sarah McKenzie

To People First member Maureen Marolt, self-advocacy means determining "your own life path."

Marolt defined the term at a recent gathering of People First Central, a group devoted to empowering people with disabilities to speak for themselves and direct their own lives. A group of a dozen or so members normally meet at the Downtown YWCA, 1130 Nicollet Mall. However, on this fall afternoon, People First Central gathered at Lake Calhoun for a benefit walk, "Made in the Shade," organized by many social services agencies and advocacy groups.

Marolt spoke assertively about her rights and what it means to be a self-advocate. She has a developmental disability stemming from a brain condition developed in her youth that impairs her motor skills.

"[It's] being able to speak for yourself -- advocating for your own needs rather than having staff or other people tell you what to do," she said.

She used her self-advocacy skills to purchase a St. Louis Park home with her husband six years ago. Marolt said she learned how to navigate information about mortgages and loans with assistance from staff from Arc-Hennepin-Carver, an organization for people with disabilities. She also sought help from Fannie Mae, a home-mortgage company, and ACORN, a national community organization representing moderate and low-income families.

Mark Olson, a People First advisor, called Marolt a fine example of someone who has taken charge of her life.

"[Maureen] will speak her piece and she has learned that skill over time," he said. "She will call and get an advocate involved if she feels she's not being treated properly by some system, or another -- whether it's the county system, the state system or with her job or with her residence."

Olson has known Marolt for sometime, but couldn't identify her disability.

The group focuses on people's "abilities," Olson said.

A goal at a time John Rischmiller -- (profiled in "Affirmative Actions" on page 8) and a former resident of Andrews Residence in Elliot Park (see page 1) -- is a leader of People First Central.

Rischmiller said a critical first step in becoming a self-advocate is knowing one's rights. He has cerebral palsy and has battled mental illnesses, including depression and borderline personality disorder.

Rischmiller, a Stevens Square resident, said people with disabilities need to be aware they have a right to privacy and free speech.

They also have the right to deny medications administered to them.

While people with disabilities often depend on advocates and care workers for assistance with many of their needs, Rischmiller said, certain boundaries should be respected.

For one, care workers should refrain from opening [disabled persons'] mail.

Instead of simply "knocking and walking in," residents should be given a moment to collect themselves before a care worker walks through the door, he added.

Olson credited Rischmiller with mentoring others to self-advocate. "He's very good at welcoming other individuals and about sharing his experiences," he said.

The local People First chapter is part of an international network that encourages people with disabilities to speak for themselves, develop new skills, work toward independence and promote inclusion in the community.

This fall, the group has focused on relationship issues, personal safety and

self-defense.

Olson said he believes all people with disabilities have the potential to become self-advocates.

"It is realistic for everybody to advocate for their own needs in some manner," he said. "For one person, advocating for themselves, that might be just attending the meeting."

Even people with disabilities limiting their ability to communicate, such as autism, have ways of expressing their desires on some level, he said.

When working in groups, self-advocates often fine-tune and polish ideas before acting on them. Individuals acting on their own aren't always able to do this.

Olson said there are times when self-advocates might push too far, though in his experience, it's the exception to the rule. "Someone might push for something that they really, really want [such as a driver's license] that might end up being harmful," he said.

"However. . . . We try not to step on people's dreams. We try to help people dream the dreams they want and try to achieve those dreams. Taking it a goal at a time is kind of the way it usually goes."

Embracing activism Other critical components of self-advocacy are grassroots organizing and political involvement.

At the State Capitol earlier this year, People First volunteers lobbied against proposed increases in the size of residential facilities and cuts to support that goes toward community-based programs. Marolt said self-advocates make a point of sharing personal stories with legislators when they consider policy matters.

Rischmiller relies on such funds to pay for his health care. He has cerebral palsy -- a type of developmental disability stemming from brain damage that occurred before he was born. The condition results in a loss of control over the body's voluntary muscles. The money covers therapeutic treatments Rischmiller receives at Golden Valley's Courage Center.

Impending co-pay increases and transportation programs cuts, among other things, have Olson worried about some People First members.

"They will be nickel-and-dimed to the point that they have nothing to live on," he said.

Besides lobbying against human-services cuts, self-advocates have also worked to promote more training and pay for direct support staff who work with the disabled.

On average, Minnesota direct support workers earn $7.81 and only slightly more in the Twin Cities metro area.

Many leave the job within the first year because of the stress, low pay and difficult hours, Olson said.

Marolt lamented high turnover among care workers and counselors. She said it's difficult to establish close relationships when people quit so frequently.

While there are many issues to tackle, People First's mission is first and foremost. It commands the group to see people first and support the disability by focusing on the ability, Olson said.

Rischmiller lives by the same idea.

"All people are different. Don't let the disability get in your face," he said.