Santa Maria Sun / News
The following articles were printed from Santa Maria Sun [santamariasun.com] - Volume 14, Issue 29
People with disabilities advocate for their rights on the Central Coast
BY CAMILLIA LANHAM
Self-advocacy is something that many folks on the Central Coast probably don’t think about on a daily basis. But for some adults, both young and old, the need to not only be treated as an equal, but also to have a quality of life that’s equal to everyone around them, presents itself on a daily basis.
For adults with intellectual and developmental disabilities, that quality of life could refer to something most take for granted—the ability to have a social or physical relationship with another. But it’s not a lack of desire or physical ability that prevents those kinds of relationships from forming.
David Miklas, who works as an adviser to People First of San Luis Obispo, said more often than not the impetus behind barring a relationship of any kind for adults with disabilities is either a caregiver, a parent, or it’s against the rules of the group home they live in.
“These are people that are adults; they should be able to do the same things that adults do,” Miklas said. “If someone wants to go to a strip club, they shouldn’t be denied that opportunity just because [support staffers are] morally opposed.”
The right to sexuality is something People First felt strongly enough about to create a Sexual Bill of Rights, which will be presented at the inaugural Central Coast Self Advocacy Conference on Sept. 28. People First is a self-advocacy organization run by people with disabilities, for people with disabilities.
“Even though we have disabilities, we’re people, too,” said Jody Barker, president of People First. “We are people first.”
Adviser Miklas said the whole idea for the bill of rights came about after a discussion during one of the group sessions he runs. A group of women was discussing relationships, or the lack thereof, and how group home staffers or their parents wouldn’t allow them to spend time alone with the opposite sex. People First ended up cutting together a video describing why the rights are necessary and what they are. It will be shown during the bill of rights presentation at the conference.
Anastasia Bacigalupo, director for Area 9 of the State Council on Developmental Disabilities, said sexuality is a controversial issue within the community that’s beginning to pick up steam. She’s excited it will be part of the upcoming conference.
“People with disabilities are seen as perpetual children,” Bacigalupo said. “There’s this perception that [the sexual] part of them will never turn on.”
Being seen as perpetual children is a gigantic reason the self-advocacy movement is so important, Bacigalupo said. Area 9 spans Santa Barbara, San Luis Obispo, and Ventura counties. The conference is meant to draw together resources from the three counties and those who need them to create a network for people to lean on and access.
That process, Bacigalupo said, will hopefully give people with disabilities on the Central Coast a broader system to pull from; not just to find ways to get what they need and what they want, but also to educate them and get them comfortable with speaking up for themselves.
“The self-advocacy movement is really the civil rights movement for people with disabilities,” she said. “It’s a movement that empowers people with disabilities.”
It’s all about reaching that “approximated quality of life” that is similar to anybody else walking around in the world, she said. That life can involve living independently within the greater community, gaining adult education, socializing, finding the right group home, and finding a job or starting a business.
Giving the keynote address will be Sam Durbin, a self-advocate and published author, who has championed the cause of self-determination within California and throughout the United States.
Durbin encourages adults with disabilities to make their own choices and to deal with the consequences, whether good or bad. He said nothing is more important than self-determination.
“It’s something that nobody can give you, but it’s also something that nobody can take away,” Durbin said. “It’s that part of you that makes you want to be better.”
Durbin’s first book, You’re Not the Boss of Me, tells both good and bad stories about what it’s like to live with a disability. He said they are stories about his friends and the people he’s met. The reason Durbin penned the book was to support his friends, and to teach them to be motivated in their own lives: to stand up for themselves, go out and get a job, to not feel sorry for themselves, and to teach the world how to treat individuals with disabilities.
“We may be different, but we’re still equal and we should be treated like human beings,” He said. “Why shouldn’t we be?”
Contact Staff Writer Camillia Lanham at firstname.lastname@example.org.