In the 1960s and ’70s Berkeley leaders in the civil rights movement for people with disabilities fought for accessibility to public spaces and the opportunity to live independently. And in Berkeley today, new leaders are still struggling for the rights of people with disabilities. Last week one of these, Tamar Michai Freeman received the Paul G. Hearne award for leaders in the movement for disability rights.
Freeman is among the 20 percent of Americans with disabilities, according to the Washington, D.C.-based American Association for People with Disabilities, the agency that sponsored the award.
Freeman, who won the award for overcoming obstacles in her life and for her vision for the future, stays calm when describing the everyday indignities she lives with as a disabled person – people become impatient with the staccato speech caused by her ventilator, doctors assume that she could never be a parent, and waiters ask her husband, “What does she want for dinner,” instead of talking to directly to her, she says.
Although she smiles, she says, “Sometimes it makes me want to scream.”
Freeman will put the $10,000 that comes with the Hearne award towards establishing a nonprofit agency, “Glad to Be Here.”
Her vision is to educate the medical community and sensitize it to the lives of people with disabilities – a passion that has been influenced by her own life experiences.
“I was diagnosed (with muscular dystrophy) when I was eight,” said Freeman. “When the doctor said I would be a vegetable I didn’t know what ‘vegetable’ meant, but I saw the tears on my mother’s face.” Many disabled people find that insensitivity in the medical community continues throughout life.
Jenny Kern, a Berkeley attorney, won the Hearne award last year. She eagerly supports Freeman’s plan. “Most medical professionals are trained in the medical model of disability which means that you’re looking for a cure to fix these people,” she said. “It’s often the case that if a doctor can’t cure you it’s somehow an affront to the profession, which does nothing to improve the quality of our lives.”
Kern described visiting a dermatologist whose office didn’t have wheelchair access. “When I said it was humiliating to yell upstairs to get attention she assumed it was because of my disability. It’s not,” she said. Kern continued, “Then she asked me about my spinal cord injury. A dermatologist did not have to know about my disability. Doctors like everybody have stereotypes and fears about disability.”
Some disability activists feel doctors’ stereotypes may lead to poor health care. “A lot of women with disabilities are not seen as sexual, or as women. We’ve heard about women going to their doctors where the focus is so much on the disability that they don’t get referred to reproductive health care. They’re asexualized,” she says.
Freeman is a commissioner on Berkeley’s Commission on the Status of Women. One aspect of her nonprofit will focus on the special needs of disabled women. She is particularly interested in resources for disabled women with families, an interest that came from researching her own parenting options, and encountering resistance and, she said, “societal assumptions about what kind of parent I can be.” She was disturbed to find that people thought only about what she couldn’t give as a parent, rather than thinking about what she could give. “There’s a physical dimension to parenting,” she said. “There’s also more, there’s a spiritual and emotional (component).”
Young disabled women, Freeman said, need role models to show them the different possibilities of their lives. Her eyes got wide when she described the intensity of the first time she saw a picture of a disabled woman in a wheelchair – pregnant.
Beyond activism and education, Freeman wants to create a space where people with disabilities won’t have to face constant stereotyping. It would be a place where, she says, they can let go of, “the enormous task of feeling like you have to educate,” and instead relax, “and just enjoy the every day reality.”
The name of her nonprofit “Glad to Be Here,” is a constant reminder that even dealing with the difficulties of day to day living with a disability, life is still meaningful. “People say to you, ‘You’re so courageous. I think, ‘What’s the alternative?’’ Should people with disabilities just jump off the Golden Gate Bridge? That’s not the alternative.”
Freeman is one of 11 people to win the award this year, out of the hundreds that submitted applications. She is the second Berkeley resident to win it in the two years it has existed. Kern was the other.
Paul G. Hearne was a founder of the American Association for People with Disabilities, and a lawyer who helped insure the passage of the Americans with Disabilities Act. When he passed away two years ago, the Milbank Foundation for Rehabilitation and the American Association of People with disabilities created an award to support emerging leaders with disabilities.
The creation of the award is timely. “Unfortunately what is happening is that many of the disability leaders are aging,” said Helena Berger, Chief Operation Officer for the Association of People with Disabilities. “Because the movement goes back that many years, many of the leaders are getting older or unfortunately passing away. People in the movement are realizing that we need to find new leaders with disabilities in the community.”