The following article was published in 
Sound Shore Review
February 20, 1999

Kid Crusader: 11-Year-old Margaret Purk fights for rights of the handicapped

        Margaret Purk is glad that Caldor is going under.  The Rye Brook resident had been fighting for the store on Boston Post Road in Port Chester to become
accessible to large wheelchairs.  Its bars out front, which hold carts in, also hold some handicapped people out, although entrance in available through a side door.  No amount of calls or letters on Margaret's part could open that front door.
        Margaret has written a number of letters to a variety of local institutions
that are not completely handicapped-accessible -- from stores to schools to
the Port Chester Public Library. 
        She has become a local activist for handicapped people, and she's 11.
The reason Margaret fights for the rights of handicapped people is that she
herself is disabled.  She has never walked.  Born with Spinal Muscular Atrophy
(SMA), she gets around via power wheelchair.  Due to a gene mutation, her muscles will never grow beyond their infant size.
        A fifth-grader at Port Chester Middle School, Margaret has taken it upon
herself to gain access to all floors of her school, the second floor of the library (where the kids' books are) and Caldor (though this last problem seems to have solved itself).
        At school, Margaret can't travel from floor to floor without going outside,
and can get into the building only through certain entrances. "The school's not really accessible," she says, "and the elevator's not big enough for my wheelchair."
        There is no aide at the school for Margaret's special medical needs, so she
brings her caregiver, Brenda Hanson, to school with her.  She spends only a
half-day there because the air becomes too warm for even her plug-in ventilator to counter. "The school gets too hot," she says.  "It's very stale and it makes it hard
to breathe."
        Back home, where she lives with her father, Timothy, who works for Macy's,
and Brenda, Margaret rests and does her homework, which she usually enjoys.
        "Homework is sometimes fun," she says.  "But I don't like language arts
because I have to write 'I' stories and I like to write pretend stories."
 Beanie Buddies 

        Therein lies this activist's alter ego -- your typical 11-year-old Beanie
Baby fiend.  In addition to owning close to 400 bean bag toys, which she
stores on "bean poles" her grandfather helped her make, Margaret also writes
fantastic stories about her Beanies. "I like them because they're easy to pick up and hold," she says, adding that her favorites are Spooky the ghost, Lucky the ladybug, Baldy the eagle and Goldie the goldfish.
        These are also the four she brought with her to the hospital when she had
spinal fusion surgery last year.  She explains, "Spooky kept the bad guys and
the germs away, Lucky was for good luck, Baldy to be free of the hospital, and
Goldie to strive for my gold medal."
        They must have all done their job.
        "Her doctor said it could be as little as 10 days or up to two months in the
hospital," Brenda says. "I was out in five days," Margaret says.  During her recovery, she received between one and 15 Beanie Babies a day for a month -- many from people she had never met.
        Beanies have also earned Margaret her first writer's paycheck.  Her byline
can be found in the March 1999 issue of Mary Beth's Beanie World for Kids. Other tales and drawings of Beanie Babies have won Margaret approximately 100
Beanie prizes over the last two years.  She enters the contests online.

Ahead of the pack

        Wheelchair or not, this girl is more technologically advanced than most
people you'll run into.  She uses an on-screen keyboard with a mouse, or a
voice system that translates spoken words into written.  She has two of her
own Web sites, makes "Beanie friends" online and picks up on new technology in
a flash.  "My science teacher was teaching a program, and I got it in 15 minutes," she says.  "The other kids, it took about two weeks."
        Margaret also wrote for Barbie Bazaar about the wheelchair Barbie. "I said it wasn't good because it didn't have brakes on the wheelchair or a seatbelt," Margaret says.  She also writes a regular Dear Abby-type column for the Winners on Wheels scouting group's newsletter.
        For an 11-year-old, Margaret is well-equipped to help other children with
their problems.  In addition to her illness, which keeps her out of school many days and can turn a cold into pneumonia very easily, Margaret has faced much in her short life.  Her mother was killed in an automobile accident in 1991, and her younger sister, who also had SMA, died the following year. 
        Despite the hardships she has faced, Margaret lives her life in an enjoyable
fashion, effecting positive change along the way -- and hopefully having a little fun.
        She talks of the new wheelchair she has on order, one that will double the
4-mph speed of her current chair, turn on her radio and TV and hold a battery-
powered ventilator.  She recalls her first test-drive in the new chair, when
she left yet another able-bodied person in the dust. "I had it at a high speed," she says.  "I was going straight down the hallway and the guy couldn't keep up.  He was running after me."

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Joan Fleitas, R.N., Ed.D.
Assistant Professor of Nursing, Fairfield, University
Fairfield, Connecticut 06430

Last updated: June 26, 1999