STEPPIN' OUT IN STYLE
OK. So, you're having a bad hair day.
by Anita M. Caldwell
"Personal appearance shows what kind of person you are."
But when neuromuscular disease makes it difficult or impossible to style your own hair, dress yourself or put on makeup, it might be tempting to let that "bad hair day" become an everyday occurrence.
Don't succumb, say several men and women among those served by MDA. They advise taking the time to tend to your personal appearance. Whether you're about to interview for a job, speak at a corporate seminar or go to the mall, when you look good, you feel good.
LOOKING GOOD AND FEELING GOOD
"I feel much better when I'm dressed up," says Patrick Hill, 22, of Ronkonkoma, N.Y., a child study major at St. Joseph's College on Long Island who began student teaching in September.
Hill, who has Duchenne muscular dystrophy and uses a power wheelchair, often wears pull-over short-sleeved shirts and casual pants. This way of dressing "says that you feel good enough about yourself that you want to look good for yourself and others," Hill explains. "And for the kids, it says to them, 'That's what you do when you go to work and you take it seriously.'"
Pulling yourself together in the morning isn't always easy, especially if you need an aide or caregiver to help. But you can be well dressed with minimal effort.
"As long as you are clean and decently dressed, it doesn't matter," says Michelle Cooper, 33, of Sylacauga, Ala. The 1998 Ms. Wheelchair Alabama is a consumer activities coordinator for Civitan International Research Center, a program affiliated with the University of Alabama in Birmingham to improve quality of life for people with disabilities.
Cooper, who has Friedreich's ataxia, usually wears stretch pants with stirrups and pullover shirts and sweaters. "It's nice to look in the mirror and say, 'You look good.'"
Dressing well also lifts the spirits. "If you look in the mirror and you see you're dressed up, you'll see yourself as better looking and you'll feel better, especially if you get compliments," Hill says.
Angela D'Arezzo, 39, of New York, was a medical transcriber for many years and in 1996 began a free-lance modeling career. D'Arezzo, who has limb-girdle muscular dystrophy and uses a power wheelchair, says dressing well is important for self-esteem.
"People get a different impression of you if you have sloppy dress," she says. "For me, personal appearance shows what kind of person you are, that you take care of yourself."
Even before she began modeling, D'Arezzo says, "Personal appearance was always important to me. I was working in an office so I had to learn how to dress appropriately. I have ups and downs like everyone else. But if I look good, I feel good."
Cooper agrees. "It improves your ego, even though that's not what you should focus on. Every now and then you need to boost your ego."
WHAT OTHERS SEE
"If I wear junk clothes, people look at the wheelchair."
Giving extra attention to physical appearance also helps others see past the wheelchair and focus on the individual. "I want to look presentable," Hill says. "I feel I represent other people in wheelchairs."
Dan Molloie, 29, of Voorhees, N.J., is an outreach specialist for the Camden County Office of Disabled Consumer Services. He speaks at schools and community organizations on disability awareness.
"To me, if I wear junk clothes, people would look at the wheelchair," says Molloie, who has Friedreich's ataxia.
Molloie sees many wheelchair users wearing sweat shirts and sweat pants, but he doesn't like that look in the workplace. "It's so easy to wear sweats. They're comfortable. I can see why people do that. But to me, they're pajamas."
Molloie says people already recognize there's something different about you when you're using a wheelchair. "You have to overcome that," he says. "You do that through dressing." Molloie wears shirts with no collars or shirts with a tie and khaki or black pants.
Making sure people look past the wheelchair is a big part of comic Gene Mitchener's routine. Mitchener, 56, of Chatsworth, Calif., was a nationally known "sit-down" comic for 14 years and about two years ago moved his humor to motivational speaking and lecturing. Mitchener's booking agent, Damon Brooks Associates in Hollywood, has him traveling throughout the country and internationally to speaking engagements. He also volunteers in hospitals offering humor therapy, and has served on the boards of directors of three national corporations.
"If everything you see about me is negative, I make you laugh about it with humor," says Mitchener, who has spinal muscular atrophy and uses a ventilator.
"The disabled have tons of negativity surrounding them so we have to come off better than the next guy just to get our foot in the door," he says. Mitchener wears stylish, tailor-made clothing designed for comfort in a wheelchair.
The company he keeps also affects how he's perceived, Mitchener says.
"Whenever I go out, I take with me a very attractive, well-dressed woman," he says. "If I go out with a guy, people think, 'There's the poor cripple and the man takes care of him.' When I go out with an attractive woman, they say, 'Wow, he's lucky.' The whole attitude toward me changes. A guy will say to me [jokingly], 'Where do I get a wheelchair?'"
"Everything has to look immaculate," Mitchener says, including the design and condition of the wheelchair. "Get the latest wheelchair on the market."
DRESS FOR SUCCESS
After he shaves and combs his hair, Patrick Hill asks his assistant to help him put on a shirt, tie and dress pants for the day. Photos by Michael Spruill.
"Jackets are cut so they hang straight and don't hit the wheels," Mitchener says. "It's easier today looking good and being comfortable because of the advances in adaptive clothing."
Most people agree that, if you're using a wheelchair all day, the style and comfort of clothing is extremely important. Dressing well, however, doesn't mean having to look like a model or buy expensive clothing.
"Everyone's on a budget," D'Arezzo says. In addition to modeling, she's a United Way ambassador for the International Center for the Disabled and acts with the National Theater Workshop of the Handicapped.
"I don't have the money to look the way I want but there are ways to dress well," she points out. "You don't have to buy the best of everything. A nice haircut and grooming, a neat appearance, that's already a plus. I look for sales and I go to thrift shops; they have unique styles."
Molloie has used adaptive clothing. When he buys traditional clothing he purchases larger sizes.
"I go for the baggies, khaki or black pants," says Molloie, who, along with his county job, helps administer the Personal Assistance Services program for New Jersey, a home care program. He also is on several committees in the state including serving as vice chairman on the Special Citizens Advisory Committee for the Office of Special Services for New Jersey Transit.
"My shirts are more colorful," he says. "Or I wear white shirts with a snazzy tie." Molloie, who admits he's a little vain "but a good vain," uses accessories to brighten up his look. Like vests, or earrings for his five ear piercings.
"I want people to see I'm an individual," Molloie says. These days he's showing only two earrings in one ear and one in the other. He's quick to point out that he doesn't have any 'accessories' on his face.
"I'm too cute," he says with a laugh. "I don't want metal on my face. I have [eye] glasses. That's enough."
Hill wears traditional clothing but takes extra time when dressing to adjust his pants.
"Pants are a problem with some people. Adaptive clothing seems to be more comfortable so you don't have the waist riding down," he finds. "I'm in regular clothing right now. In the morning, my pants have to be arranged in the most comfortable position. I'm sitting in the chair all day. Taking time before you get into the chair, that makes all the difference."
Cooper has adjusted her wardrobe to meet the needs of wheelchair comfort. She wears stretch pants with stirrups. "The stirrups help them stay down so I don't have them halfway up my leg. They have a comfortable elastic waistband that doesn't bind or hurt me."