East Wareham woman aims to change minds about disabilities
Creative perseverance.
That has been 52-year-old East Wareham resident Patti Panzarino's mantra since she was a young girl.
Born with spinal muscular atrophy, type 2, Panzarino has never walked.
The genetic disease is characterized by the loss of nerve cells in the spinal cord, which affects the body's ability to control muscle movement.
As Panzarino describes it, creative perseverance is "finding ways to achieve more than you ever thought was possible in your life."
Growing up on Long Island in the 1960s, Panzarino participated in wheelchair karate and other sports, danced at school dances in her wheelchair, and learned to play the piano despite not being able to use all her fingers to press the keys.
"I just never really let this stop me," explained Panzarino, who has lived in Wareham for 17 years.
That attitude is what earned Panzarino the title of Ms. Wheelchair Massachusetts earlier this spring, and is what she hopes will get her the distinction of Ms. Wheelchair America this summer.
The titles will give her a mouthpiece to help her spread awareness about disabilities and to garner acceptance of the people who battle them, she said.
"It gives me a voice," she said. "People are more apt to listen when they see a sash and crown."
The competition is based on personal interviews, speeches, and on-stage interviews with the aim of finding a national spokeswoman for disabilities.
"The more we're out there, the more things become accessible — in architecture and attitudes," Panzarino explained. "We need to keep promoting to society that we are viable, contributing people."
Among the difficulties faced by people who suffer from disabilities: buildings that aren't wheelchair friendly and discrimination from able-bodied people.
A particular problem for Panzarino, who performs live onstage with her band Olypsys, is accessibility in the entertainment industry.
Panzarino, whose husband Vinny Rinaldi is also in the band, said the group has had to turn down gigs because some buildings are just too difficult for Panzarino to maneuver in her wheelchair.
At one particular show, a stairway was so steep that even with Panzarino's portable wheelchair ramp, she could not get onto the stage.
"I had to play on the floor, which was a bit humiliating," she recalled. "But I did it and I smiled."
Panzarino plays keyboards, sings, and serves as music director in the four-member band, which just released an album.
"Being on stage with her is amazing," said Rinaldi. "First people see the wheelchair, and then they hear the music and they don't care."
Her biggest struggle, Panzarino emphasized, is "other people's attitudes."
Asked if she faces discrimination even in this day and age, Panzarino simply responded: "Every day."
It can be as simple as people staring at her or completely ignoring her in public.
"You can put ramps everywhere, but if people don't change their attitudes, it doesn't matter," Panzarino said. "There's been a lot done since I was a child, but we've got a long way to go."
Even if she doesn't win the Ms. Wheelchair America title, Panzarino has the better part of a year to serve as Ms. Wheelchair Massachusetts. She said she hopes to get in touch with key players, including state officials, who can help in her mission.
"When I decided to do this, I jumped in with both feet. Both wheels... all six wheels. Head first," Panzarino said with a smile. "I only have a year! I just want to change the world."
Want to help Panzarino change the world? She currently needs to raise $3,000 to cover her participation in the Ms. Wheelchair America pageant, which will be held in Providence, R.I. from August 6 through August 12. To donate, make a check payable to Ms. Wheelchair Massachusetts Foundation and mail it to P.O. Box 168 Raynham, MA 02767. Donations can also be made online at www.mswheelchairmass.org.
For more about Olypsys and to hear the band's music, visit www.facebook.com/olypsys and www.olypsys.com.