Making a New Image for Disabled : Lecturer Spearheads Drive to Change Public's Perception

Times Staff Writer

Mary Nemec Doremus was so intent on her subject that she could barely eat her bagel, scarcely touch her iced tea. "We're talking about a movement here. There have been four great ones in our time: civil rights, feminism, the elderly and, now, it's people with disabilities.

"And you know what it's about? It's about opportunity. People with disabilities don't want to be given favoritism. We don't want pity. We don't want to be super crips. We just want to be what we are, for better or worse. People who you like or dislike, who fail or are great at what we do."

She talked fast, eager to get her point across, determined that people should understand the impact of what she was saying. "I go through a door, and I tell the people I'm meeting, 'There are 36 million people with disabilities right behind me.' "

Mary Nemec Doremus is founder and president of the National Challenge Committee of the Disabled, a Washington-based organization whose goal is "assisting the media in changing the way America perceives individuals with disabilities." She's been in Los Angeles for the last two weeks talking her cause at public meetings and private ones, meeting people with money and those with ideas.

Motivating, Inspiring

A former television and radio interviewer/commentator, a regular for many years on the lecture circuit specializing in motivating and inspiring people to get involved in their country's future, she has a certainty about her. Her role in the disability rights movement? It's to communicate. "I have a commitment to talk, to get people excited, and to recognize opportunity when it's there."

Challenge, as the committee is called, is concerned with the disability movement as a whole. It was established, Doremus says, to serve those organizations--whether at the grass-roots or the national level--that represent the disabled community. Already, in Challenge's 1 1/2 years of existence, it's networked with 150 groups. The groups may have their specific interests and goals, but the idea of Challenge is to work for them all--a unified voice to the media, which, Challenge supporters believe, "can bridge the communication gap between the general public and disabled communities."

Doremus, 41, is one of those upbeat, high-energy people who can't seem to wind down. Except, and she laughs at how odd this must look even as it's happening to her, Doremus has a mysterious nervous disorder that so robs her of energy that she can scarcely walk 15 feet without collapsing exhausted at the nearest chair. Consequently, though she is mobile, she usually gets around by wheelchair. And when she's talking, especially when she's animated and passionate about her subject, she'll suddenly have to stop--unable to go on. Her silver medication case always at hand, she'll pop a pill, Mestinon ("It's an orphan drug. You can hear it cry mama, mama"), and deliberately pace herself for a few minutes until the medication takes effect. Then she's off and talking again. In the course of three hours of really good conversation, she may have to take Mestinon five times.

But it's by choice, she says: Take life on her own terms, on the run, rather than as a convalescent. What she's got going for her, she says, is nothing less than a mission.

Marketing Disability

What she must do, Doremus says, is market disability. "I want to make disability chic," she declared. "I want to talk about life after disability. It can be a good life. But for that, we have to see people with disabilities as an accepted part of us."

And that's why Doremus and the National Challenge Committee of the Disabled are out to:

--Pressure business's top brass to include people with disabilities in their advertising. Not advertising about people with disabilities, but commercials and ads where people are standing in line at a bank or buying hamburgers or taste-testing colas.

--Pressure the media to be more sensitive in writing about people with disabilities. For example, they advocate the elimination of four words-- afflicted, stricken, victim and crippled --at least when used in connection to people with disabilities. She contends that being called a cripple is highly offensive to a person with a disability. A pamphlet, "Guidelines for Reporting and Writing about People with Disabilities," has been published, but needs funding of $25,000 for mass distribution to media professionals and journalism students around the nation.

--Create awareness of the movement and its goals with an onslaught of special events and programs. Among those already in the works: the National Challenger Program and Barrier Awareness Day. The National Challenger Program identifies individuals from throughout the nation whose accomplishments demonstrate the theme of "Turning Obstacles Into Opportunities." These people are sent around to special events and represent what Doremus says the disabled desperately need: "role models, role models, role models." As for Barrier Awareness Day, the first was held March 4, 1985, in Richmond, Va. Sponsored by Cumberland Hospital and 19 area health agencies, civic organizations and other concerned citizens, the project included having eight people from the community "assume a handicap" as they went about their daily routine at work.

The programs and projects she's involved with, says Doremus, are only a means to this end, a means to changing people's attitudes about disabilities. And awareness, or maybe the lack of it, is the biggest obstacle to opportunity.

Opportunity? "It's like education, transportation. For years everyone segregated the disabled from society. But it's important we get the same education, so we can get the same opportunities for jobs, for making a good life. In the past we've been set up to fail. People, if they did hire us, it was only out of pity or as a favor.

Same Opportunities

"In our society, people get rewards for the things they accomplish. If you work hard, you deserve what you get. And people with disabilities should have these same opportunities."

She twisted to reach a pamphlet in the back pocket of her slick, silver Quickie II wheelchair. "We're trying to let people be aware of all the things that are going on and this," she said, showing a brochure for a Los Angeles area program initiated by Arco where high school students with disabilities are given support, education and exposure to high-tech fields. " . . . These kids, they'll all get jobs."

Mary Doremus is in fine form: kicking shins, as she says, while pushing her listeners toward action. Any kind of action. "But if we don't act now, we won't act at all." Even as she is pushing the movement though, her manner animated and infectious, her own story slips in and out.

Strange Symptoms

She apparently picked up a virus during a trip with her parents to China, for when she returned she began experiencing a strange set of symptoms ranging from personality change to stiff neck to skin painful to the touch. She was 34, living in Alexandria with her husband Ted Doremus and two young sons, now 12 and 8. Doctors had no answers; indeed, she says, even harder than the symptoms, which became increasingly more dehabilitating, was not knowing what she had. Doremus still does not know. The working name is "central nervous system vasculitis secondary to white matter disease." For seven years, she's been in and out of hospitals, had countless tests and treatments, and during one three-month period gained 75 pounds (which she's since lost) as a side effect of the medication she was taking.

In between hospital stays, "downtime"--there's been her involvement with the movement, "up time." And through it all, there's always been her husband and sons. "Without them, I wouldn't be who I am today."

She's a pretty good role model herself. And this is fine by her if, she said, "I inspire you because that's the way I am. But I don't want your admiration because I can do wheelies in my wheelchair.

"The big deal is not saying, 'I can do this.' The big deal is saying, 'no big deal.' "

The National Challenge Committee of the Disabled is at 1155 15th St., N.W. Suite 500, Washington, D.C. 20005.

Copyright © 2019, Los Angeles Times
EDITION: California | U.S. & World
70°