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FIGHTING FOR THE DISABLED Militancy works for Marillynn Phillips

As a March of Dimes poster child, she smiled for the camera the way she was supposed to, a happy little polio victim.

But at 47, Marilynn J. Phillips obviously isn't a child anymore and wants to stop being treated like one. She doesn't want to be carried over steps to enter a building. She doesn't want to be lifted up to reach drinking fountains set too high for her. And most of all, she doesn't want to be told to smile and be nice and trust the adults to take care of things.

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"These posters make people see the disabled as always children," said Ms. Phillips, who last week succeeded in freezing more than $500,000 in federal funds to the Maryland State Arts Council until it makes its building accessible to the handicapped. "And they have produced a feeling among disabled that the only way to survive in this country is to smile."

Ms. Phillips is not an unsmiling person. In fact, she's funny and engaging and bright -- she graduated from high school at 16, holds several masters and doctoral degrees in English, history and folklore and teaches at Morgan State University.

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Yet despite all that, the world tends to define her by her disability. Especially since she's become a vocal -- some would say confrontational -- activist for the rights of the disabled.

It's not by choice -- the hazel-eyed, wiry-haired Ms. Phillips would just as soon live what she calls "a real life." There's certainly enough for her to do without playing the Dirty Harry who enforces violations of equal access laws: She has her academic career -- in addition to teaching at Morgan, she's a folklorist who specializes in oral histories and body image -- and a husband and three cats and all those other things that make up a full life.

It's just that the world can nickel-and-dime a person in a wheelchair. If she wants to buy a new dress, will she be able to get into the fitting room? If she goes to a restaurant, can she get through the front door -- and if so, can she use the bathroom? And if she can get into the bathroom stall, can she also close the door? If she wants to go swimming, pick her husband up at the airport, attend a concert, visit the library . . . well, you get the picture.

"Inaccessibility is discrimination. I don't go out looking for these problems. I just enjoy living," said Ms. Phillips, who lives in Hampstead in Carroll County. "What happens with most disabled people is they become forced into a sort of submission. You go to one restaurant only, the one you can get in, you let people carry you."

She refuses to do that -- and so she starts writing letters whenever she's denied access to a building. In addition to the state arts council, she's filed complaints against Western Maryland College, the Carroll County Law Library and any number of other stores, restaurants and businesses.

"I have a feeling if you don't fight, you die on the inside. You shrivel up," she said. "You're submitting to a portrait of yourself that is inaccurate. I embrace my disability. I have really benefited from having a minority perspective in this culture."

Not unsurprisingly, she's made some enemies; the real surprise is that some of them are disabled themselves and think she goes about things in the wrong way.

"We try to do things more amicably," said Marion Vessels of the governor's committee on employment for people with disabilities, who herself uses a wheelchair. "We try to help people to work in a conciliatory way. I think the confrontational manner in which she might approach people does not lead people to want to work with her."

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Ms. Phillips indeed works independently rather than with what she calls the more mainstream disability community. Some groups, she believe, create special programs for the disabled, which then become self-perpetuating and enclosed, rather than taking her preferred path of pushing for access to the rest of the world.

And she does push. "I think her complaint itself is eminently legitimate . . . but I was concerned she was focused on punishing people on what they hadn't done in the past," said Judith Levine, the former deputy director of the state arts council who handled Ms. Phillips complaint. "My personal view is to deal with the present and the future. She wasn't especially patient about it, but I can understand why. She is the type of person we see throughout history -- they're very focused, very committed to getting something accomplished and they don't have any concern for the consequences."

Ms. Phillips rejects the notion that her demand for accessibility is denying anyone anything, even though some of the funds her complaint has frozen are grants to artists and arts groups.

"I'm not depriving anybody of anything, the Maryland State Arts Council is," she said. "They have been given plenty of time to comply."

Though controversial, Ms. Phillips has drawn applause as well.

"I think she represents what's good about the disability rights movement," said Evan Kemp Jr., the chairman of the Equal Employment Opportunity Commission, who succeeded Supreme Court nominee Clarence Thomas when Mr. Thomas became a federal judge. "What she does is terrific. We need the Marilynn Phillipses of the world."

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Mr. Kemp, who also uses a wheelchair, said he was surprised when he heard the news of Ms. Phillips' complaint against the state arts council and her ultimate victory. "I didn't think she was that confrontational, but I'm very pleased she won," he said.

Ms. Phillips' base of operations is a log home in northeast Carroll County that she and her husband Robert Winans moved into in 1987, picking the location after determining it was equidistant from her job at Morgan State and his at Gettysburg College, where he is an English professor.

He is fully supportive of Ms. Phillips' activism, even as he sees how it can drain her time and energy.

"It's the only way to get things done," he said. "If you play the good cripple, no one will do a damn thing."

Unable to find a one-story house at the time they moved to the county, they modified this one with stair-gliders on the stairs and a ramp that blends right in with their outdoor decks -- one of which has a Jacuzzi for nighttime skinny-dipping. Inside, the home is decorated with artwork from her travels through South America and Europe and her own backyard -- several pieces by a chain saw artist in Carroll County.

LTC Ms. Phillips is perhaps the natural result of a lifetime of being "ghettoized."

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A Chicagoan, she was sent to a school for all the handicapped children in the area rather than her own neighborhood school -- which meant a two-hour bus ride each way.

"At the age of 13, I petitioned to be removed from that school -- does that sound like me?" Ms. Phillips recalled with a smile. "I became aware that I didn't know any of the kids in the neighborhood. I left in the dark at 6:30 in the morning and I arrived home at dark at 6 at night. Every summer, it was like I had just moved to the neighborhood."

As a bright and articulate child, she was often the one pulled out of class when one group or another wanted a token disabled child. She became a poster child for the March of Dimes, did what she calls "a couple of gigs" for Easter Seals and even appeared on the Bob and Ray radio show (during which she became uncharacteristically silent and refused to say anything. "This was radio!" she said with a laugh. "They had to keep saying to their audience, 'We really do have a child here with us' ").

Although she is opposed to schools that segregate handicapped children, she values her own experience for one reason: "It gave me an incredible, wonderful respect for the diversity of the human body," she said. "It does not faze me if someone doesn't have arms, I don't think it means they can't do something. Plus, it was an integrated school -- since there was only one school for all of us -- so while my peers were growing up learning how to be racist, I wasn't."

She then moved to a "regular" school for her junior year of high school, and graduated at 16, after being voted most outstanding girl and becoming one of the top 10 students. Mostly that was due to her undeniable intelligence, but also to all the time she devoted to her studies.

"I had an awful lot of time on my hands because I wasn't really included," she said. "I was the outsider, there was something wrong with me, people were embarrassed to be around me. I remember having friends, but I don't remember that translating to activities outside of school. I thought everyone went straight home from school; it didn't seem unusual to me."

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Even when it came to college, she was directed only to the University of Illinois because it had a "special program" for the disabled, she said. She never found out what it was because she never needed to use it. Although she uses a wheelchair now, as a child and young adult she was more ambulatory, sometimes using crutches or leg braces, other times not.

Now that her complaint against the arts council has been settled, Ms. Phillips is hoping to get back to an oral history project on former poster children. She traveled extensively to interview the now-grown children, and finds many similarities to her own life.

"I think I probably enjoyed myself, I was pulled out of school, and sure, I'd take the gifts. But I also remember the hypocrisy -- I was always a cynic, even at 7 or 8 -- because there was so much show biz. . . . I was sucked into a lot of things, if the VFW was giving away potatoes or something, like a little Shirley Temple," she said. "I don't think any psychological damage is done to poster kids. What I think is the damage is what message is being conveyed to society. And I'm amazed at the number of disability activists who were once poster children."

THE PHILLIPS FILE

Born: July 5, 1944, in Chicago.

Married: Robert Winans, English professor, Gettysburg College, and banjo player.

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Education: University of Illinois, bachelor's degree in history, master's in English and master's in history of ideas; University of Pennsylvania, Ph.D in folklore.

Pet peeve: "The minstrelization of disability -- the people playing the disabled [in movies and television] who aren't disabled. It's like blackface."

Special academic interest: Body image, especially in regard to the handicapped.

Oddest example of this: "Playboy once did a spread featuring a disabled woman. What was interesting from a scholarly point of view . . . was I think she was a paraplegic and she covered her legs. This is not a positive sense of her body."



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