More MS news articles for August 2002

Women on a Roll

Ms. Wheelchair America Contestants Have Already Won What Matters Most

http://www.washingtonpost.com/wp-dyn/articles/A38437-2002Aug2.html

Saturday, August 3, 2002
By David Montgomery
Washington Post Staff Writer

There she is, Ms. Wheelchair America, laughing in her chair in one of the pools at the Franklin Delano Roosevelt Memorial, holding her dress above the water lapping at her knees, a waterfall splashing behind her. Some people not in chairs lifted her in for a photo op, after she had wheeled herself more than a mile from the Smithsonian Metro station in 95-degree heat.

"It's good for you people to see this," Candy Marsh, the reigning wheelchair queen from near Denver, says to some perambulators nearby. Without vans or taxis, visiting the monument to the president who used a wheelchair required a kind of death roll along the torrid Mall. "People in wheelchairs can't regulate heat and cold as easily. You see what we go through, these long distances in the heat."

A column of competitors hoping to succeed Marsh by winning the crown at the Ms. Wheelchair America ceremony tonight also made the pilgrimage to the FDR Memorial on Wednesday. Extreme wheelchair travel is not part of the judging, it's just what sightseeing from a chair can be like.

The tacit message all pageant week in Washington has been: These ladies aren't fragile. They are fun-loving and bold. They can do anything.

Except, please, no bathing suits! The first question most prospective contestants ask when they learn that a competition of this sort actually exists is: "Am I going to have to appear on a stage in a bathing suit like Miss America?"

"We don't do bathing suits," says a former Ms. Wheelchair Iowa, Judy Hoit, who developed polio a few years before the vaccine was perfected in the 1950s. "This is not a beauty contest."

Too bad. Plenty of these women would look great in a bathing suit. In fact, Marsh, 43, used to model swimsuits until the day in 1989 when she was water-skiing, fell, and was run over by a boat trailing too closely. The prop blade cut her spine.

The pageant is supposed to be a vehicle for advocacy and education. Each woman had to lose a lot to compete for this crown. Yet only those who no longer look at it that way -- who have rebuilt the notion of loss into an idea of gain -- have any chance of winning tonight.

So it's nothing like Miss America -- and a lot like Miss America. Organizationally, the two contests are unrelated. The Ms. Wheelchair America pageant is 30 years old yet still obscure. Open to women age 21 to 60, it's organized entirely by volunteers. Only 24 states and the District of Columbia sent contestants this year, one short of the record, after small statewide wheelchair pageants.

The Doubletree Hotel in Rockville is not exactly a Trump casino palace in Atlantic City. Tonight's winner gets a cruise, a new wheelchair, a $2,500 travel allowance and a dozen round-trip plane tickets to advocate for disability rights.

Ms. Wheelchair organizers say theirs is an "ability pageant," and they repeat bromides about inner beauty and how everyone is a winner. These women don't seem to need such emotional coddling.

And yet, for all its aspirations to something more substantive than a beauty contest, Ms. Wheelchair America can't escape the pageant paradigm. Ms. Wheelchair America and Miss America both pick winners. Their respective machineries exist to define and promote specific ideals of womanhood. Perky, pretty, permed and opinionated, Miss America is a vision of the American female as a perfect blend of beauty, talent and generosity.

But what makes the perfect wheelchair gal?

Inspire vs. Aspire
 

Here comes Ms. Wheelchair Wisconsin, Catherine Gugala, rolling into the Doubletree with her son, Samuel, 4, drowsily catching a ride in her lap after the trip from their home town of Menasha.

After checking in, Gugala heads to the room where the women are setting up their displays of state pride and personal achievement. She scouts the competition and is somewhat awed.

"You've been busy!" Gugala says to Stacy James, Ms. Wheelchair Ohio.

James, 31, a motivational speaker and wheelchair marathoner who also works full time in Christian ministry, has traveled the state speaking on disability. She is one of two women in the pageant partially paralyzed in similar accidents: As a junior in college, James was standing on a friend's shoulders in a swimming pool. She dove and hit the bottom.

At the moment, James, who is single, is noticing the rock on Gugala's finger. Are you married? James asks. Gugala, 31 and divorced from Samuel's father, tells how several days earlier, her boyfriend slipped the ring on her finger and proposed.

A former kindergarten teacher, Gugala is studying for a master's degree in speech pathology. At the age of 5, she developed a blood clot on her spine that partially paralyzed her.

All around, women are taking each other's measure.

Nadia Massuda, Ms. Wheelchair Maryland, 47, from Baltimore, is an accountant for Medicare. She contracted polio in 1955, the year the vaccine came out. At first she disdained the notion of competing. Then she saw it as an opportunity to tell children about disability.

Brunilda Sandoval, 39, Ms. Wheelchair Washington D.C., a communications student, said her issue is helping disabled mothers keep their children. At 19, she developed a rare muscle disease. She says the city took away two of her three children for a year because someone claimed she was neglecting them -- an accusation she says was based on ignorance of the capabilities of disabled people. Now she has the children back.

Nikki Reese, 28, Ms. Wheelchair Mississippi, a news producer with the ABC affiliate in Meridian, rolls out of the room with her mother to take a break.

"I heard last year it was really cutthroat, with half the women being really catty," she says. "Those were the half who messed up" in the competition.

Reese, who as a teenager developed a rare disease that caused muscles and tendons in her body to begin turning into bone, was nervous when she arrived for the competition. But "when I started meeting the other women, I told my mother, it's about more than the competition. It's about meeting other people and being inspired by their accomplishments. I've already been inspired by Ms. Wisconsin and Ms. Ohio. I may find myself rooting for another girl!"

Can she be serious?

If she is, she's on to something. The judges and pageant organizers -- a mix of people in and not in wheelchairs -- have definite ideas about the ideal wheelchair woman. For one thing, disabled people have enough challenges without turning on each other in competition. This is a contest where playing too hard to win might make you a loser.

Judging began Thursday with individual interviews that continued yesterday. Those sessions were not open to reporters. There is no "talent" portion of the program. Contestants are judged on two personal interviews and public speaking. Last night, the judges took notes as the women presented the issues they intend to champion. There was an audience of 200, according to organizers. Tonight, five finalists will be announced before an anticipated audience of 300 family members, friends and disability activists. Judges will ask the finalists two more questions, then a new Ms. Wheelchair America will be crowned.

The judging criteria suggest qualities of the ideal wheelchair woman: Accomplishments since the onset of disability. Communication skills, including "ability to deal with media, peers, civic groups, public relations skills, advocacy." And something called "poise/demeanor," which, on the criteria sheet, comes with a big footnote: This "is not a beauty contest." Nevertheless, "a pleasing appearance capable of obtaining favorable responses from any audience" is a plus.

Other pageant values are unwritten but underlie every conversation on the subject with judges, organizers, contestants: Angry activists need not apply, just "team players." Chips on shoulders are evidence a woman has not come to terms with her disability. The way to stop resenting poor treatment from those not in wheelchairs is . . . to stop being bothered already. Almost mystically, this change in attitude will change the attitude of the walkers. "You send that persona to other people, and people treat you that way," says Marsh, the reigning queen.

Which is not to let walkers off the hook. Ms. Wheelchair America is here to say that the country still has a long way to go to appreciate the potential and the challenges of people with disabilities. But she's here to say it with poise/demeanor.

The judging criteria leave some gaps. Are we looking for the supermom who has raised a family from a wheelchair and whose advocacy means simply making her life a rolling masterpiece of capability? Are we looking for the super-activist who has won renown working specifically in the disabled community? A blend of the two? Is it effort or results being rewarded?

And what of Deborah Johnson, 50, Ms. Wheelchair Virginia, a paralegal from Lynchburg. She has cerebral palsy, and sometimes her speech is hard to understand. Reporters ask her to repeat sentences. She's missing some teeth.

But listen long enough, and her voice and intelligence become clear, and she has an amazing story: fled an abusive home to go to college, was homeless for three months upon graduation, found a job, paid the bills and lived independently ever since, and seems one of the most joyful people in the pageant.

Can she be as good a media magnet as a former swimsuit model who had a water-skiing accident?

Life Rolls On
 

In a society where Miss America still finds an audience, body damage is going to be harder for a woman. That's part of the reason a doctor in Columbus, Ohio, dreamed up Ms. Wheelchair America in 1972, as a way to dispel myths.

The un-wheelchaired may wonder things like, Can she get dates? Find a partner? Have children? They may have analogous questions about men in wheelchairs, but many of these women will tell you that women in wheelchairs have more difficulty attracting men than vice versa. Blame Miss America.

One of the sponsors of the pageant is DateAble, a Bethesda-based nonprofit that tries to nurture a dating scene for people with disabilities. The man who became DateAble's executive director, Robert Watson, who has cerebral palsy and uses a chair, met his wife, who has mild cerebral palsy but can walk, through the organization.

"It's not that effective," Massuda, Ms. Wheelchair Maryland, says with a laugh. So far, she has not found the man of her dreams through DateAble.

Marsh once did an experiment in a bar. She settled on a stool and had the wheelchair placed out of sight. Men started hitting on her. Then she sat in the wheelchair, and they avoided her.

"Those aren't the guys you want to meet anyway, so this is a weeding-out tool," she says, patting her chair.

Some varieties of womanhood on wheels:

Reese, Ms. Wheelchair Mississippi, says she's eager to move out of her parents' house and pursue a more independent social life. One insecurity still exasperates her close male friends. She worries that because she can't go certain places, she'll cramp her friends' style, so her instinct is to stay in. They scold her: If the situation were reversed, would she feel cramped and want to dump the friend in the chair?

Regina Blye, Ms. Wheelchair Texas, 25, another news producer at an ABC television affiliate, in Amarillo, is asked for a date by a stranger as she rolls toward the Union Station Metro station on her way to the FDR Memorial. But Blye, who was shot in the neck by a teenager when she was 10, is too busy talking about her issue, which is to make adaptive devices more widely available. "If you want to be in a wheelchair, you've got to be able to afford it," she says, as a woman pushing a baby jogger cuts in front of her $10,000 power chair at the Metro elevator.

Leona Gutherman, Ms. Wheelchair Pennsylvania, 36, goes to work every day as a business analyst at a software company while her husband, George, not in a wheelchair, stays home with their four children. They were high school friends when, a few weeks after graduation, she dove off someone's shoulders and hit the bottom of a pool. He started taking her to bowling alleys and movie theaters in her chair. Six years later, they were married.

"It definitely takes a very special person to fall in love with a person in a wheelchair, and once they do, you know that's someone you can rely on for your life," Gutherman says.

Cynthia Hill, Ms. Wheelchair New York, 44, came to the pageant with her husband, LaMar, and their two younger children, Adam, 15, and Erica, 12. The oldest, Nicole, 17, the only child who remembers Mom walking, is at basic training for the Air Force. Hill was diagnosed with multiple sclerosis 14 years ago and had to quit her job as director of research and development for a national bakery.

The family adjusted. It moved out of a Victorian home and into a rambler. She was amazed that, in spite of the landmark Americans With Disabilities Act, so many obstacles to mobility remain. "I didn't see the need until I was in a wheelchair and couldn't get where I wanted to go," she says.

She couldn't visit her children's schools near Albany. "They made improvements in all three schools as my kids made their way through," she says. She got the local YMCA to install a weightlifting machine for people who can only sit.

But she couldn't do everything. LaMar taught the kids to ski -- "not nearly as well as I could have," she says. Ms. Wheelchair New York smiles and looks at her family. Then she rolls off to join a group photo.

All 25 contestants line up in their chairs with the Capitol behind them. They have sedentary bodies but not still lives. Somewhere in that group, ready to be ideal, there she is.
 

© 2002 The Washington Post Company