PROVIDENCE — Sabina Piorkowski leads a busy life. The Rhode Island College sophomore is a double major in computer information systems and finance and a member of Delta Phi Epsilon sorority. She serves as treasurer of the Advocacy and Beyond club, and when she’s not in her on-campus apartment, you can usually find her at the Disability Services Center, where she works as a clerk’s assistant.
Her active schedule around campus would be enough to keep any student in shape, but for Piorkowski, the daily commute is more complicated than simply heading out from her dorm. Piorkowski has diastrophic dysplasia, a form of dwarfism that affects bone and cartilage development and leads to early-onset osteoarthritis. She uses a wheelchair to get around campus and requires a wheelchair-accessible van to take her off campus for daily activities like grocery shopping or going to the mall.
“Grocery shopping in my walker, I can’t get many things, but in my power chair I can reach more things in the store,” she explained. “But, it’s like, how am I going to get it to the store?”
Without a wheelchair-accessible van of her own, Piorkowski relies on her mother, Marzena, to drive from the family home in Woonsocket and pick up her daughter for frequent doctor’s visits and other appointments. However, at 19 years old, she is ready to be independent and hopes to raise funds to help purchase her own wheelchair-accessible van. A new van can cost more than $50,000, and while she is looking at used vans that cost closer to $30,000 or $40,000, the price is still steep for a college student trying to get on her own two feet.
“The second the word ‘accessible’ is thrown on it, it’s just like a couple thousand dollars extra,” she said, explaining that she needs a van with an automatic wheelchair ramp that will allow her to enter without assistance and position herself in the driver’s seat.
While the van will allow her to spend more time off-campus and go out with friends, Piorkowski also looks forward to the relief it will provide for her family. She has two siblings, including five-year-old brother, Pawel, who also has diastrophic dysplasia as well as autism and other health concerns. His number of doctor’s appointments rivals her own, and having another driver in the family will relieve some of the strain.
“On a normal month, we have 20 to 30 appointments,” explained Marzena. “It’s hard to drive here all this way, back and forth.”
Despite having 19 surgeries before her 20th birthday, Piorkowski said she didn’t allow her condition to define her lifestyle growing up. She attended Woonsocket public schools with her friends and served as an altar server at her home parish of St. Joseph. As a teenager, she got her driver’s license, though she rarely drives due to the difficulty of transporting her wheelchair and other mobility aids. All of her mobility aids, including a scooter and a manual wheelchair, require assistance to place in a vehicle, and only her power wheelchair, which weighs more than 300 pounds, is suitable to travel distances or go out running errands on her own.
“I love coffee more than anything, and it’s as simple as going to get coffee,” she said, adding that her first trip in her new wheelchair-accessible van will be to McDonald’s to buy herself a coffee.
Piorkowski’s greatest challenge comes in the winter, when even her power wheelchair has difficulty maneuvering in the snow. During bad weather, she relies on the school shuttle to transport her around campus, but with a wheelchair-accessible van could drive herself.
“Winter gets tough because just like any wheelchair in the snow, you get stuck, you slip. It makes me feel really scared for winter,” she said. “[With a van,] I could get in instead of slipping and sliding down all the hills on campus, because this is quite a hilly campus.”
Following graduation, she hopes to move somewhere warmer and pursue a career away from New England’s harsh winters. Her dream job is to work as an information technology analyst at NASA’s Kennedy Space Center, a plan that would take her away from her family and place her at the center of the aerospace industry on the Florida coast.
“I’m secretly a science nerd,” she said with a smile.
Her mother supports her plans, but acknowledges her daughter will need the right resources to live independently away from her immediate family.
“She can’t really pursue her dreams and a job if she doesn’t have a van,” she said.
On Saturday, October 14, the family will hold a comedy-show fundraiser at St. Stanislaus Kostka Parish Hall, Woonsocket, to raise money toward the purchase of the van. Doors open at 6 p.m., and food and raffle tickets will be available for purchase. A wheelchair-accessible van similar to the one Piorkowski hopes to buy will be present at the event to demonstrate to guests how it serves her needs.
“It’s really cool, they’ll get to see what it looks like and what it does,” she said. “I think that’s really important.”
For more information on how to purchase tickets or become a sponsor for the event, please contact Marzena Piorkowski at 401-742-0502. Those who wish to make a donation online may visit Sabina’s GoFundMe page at www.gofundme.com/Piorkowskiwheelchairvan.
