Bells chime and horns blare from the 17-foot-by-9.5-foot platform beneath Plumb. Recorded conversations between drivers and station staff ring through the air. Five model trains with rotating poles cross bridges and thread tunnels, including one locomotive that runs at a simulated speed of 36 miles per hour.
While firefighters put out the flames, about 80 action figures roam cows, horses, pigs and goats, four skaters glide across a frozen pond and the smell of burning wood wafts from one locomotive.
In the midst of this swirl of smoke and sound and movement stands Jason Smierciak, 29, dressed like a railroad engineer: pink bandana, denim jacket, blue jeans and a casual shirt from which dangles a flower-embossed gold railroad watch chain given to him by his grandfather. Smierciak maintains the calm of an airplane pilot through a storm.
Jason Smiasiak runs a display of model railroads he built with his father at his family home in Plum on May 4. (Video: Stephanie Strasburg/PublicSource)
Smierciak’s love of trains can sometimes cause social problems for her, as she has autism, a neurodevelopmental disorder that can lead to difficulties communicating and relating to others, repetitive behaviors and special interests in often arcane subjects. But by joining Self Advocacy Voices, a Highland Park-based group, Smierciak and others with disabilities can talk about their interests and advocate for themselves.
“People with disabilities often have their talents shut out,” says Lily Abreu, director of SAV. “Often they don’t have a voice, so I wanted to give them a space where they can have their voice heard.”
Speak Up
Self-advocacy grew out of the civil rights movement, when people with disabilities chained themselves to buses and crawled up the Capitol steps to protest accessibility issues, said Kay Anderson, operations director for Self-Advocates United, a Pennsylvania group that advocates for people with developmental disabilities.
“We speak out because we don’t want and need other people to speak for us and lead us in directions we don’t want,” explains the group’s executive director, Alexa Brill, who has cerebral palsy.
Abreu, a linguist and Latin music singer, founded the independent group SAV in 2021 after realizing her music camp students needed a way to come together and express themselves during the COVID-19 shutdown. She started meeting every two weeks on Zoom, with one member talking about an area of interest and the others listening and asking questions.
Jason Smiaciak, 29, speaks during a Zoom call in the living room of his Plum home on May 4. Smiaciak ended the call by singing “Colors of the Wind” from the Disney film “Pocahontas.” (Photo by Stephanie Strasberg/PublicSource)
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SAV, which hopes to obtain nonprofit status, serves about 60 people between the ages of 18 and 70, about 25 of whom attend presentations on issues of interest to members and sessions on personal development. Disabilities among members and participants include autism, cerebral palsy, Down syndrome and mental illness.
Maura Kegg of Ross gave the group’s first presentation on Jan. 16, 2021. She spoke about her life with cerebral palsy and scoliosis and is wheelchair bound.
“I don’t let that get me upset,” she said. “I just focus on the good, I don’t just focus on the bad.”
Self-assertive voice
For more information, visit selfadvocacyvoices.org.
The organization’s summer social will be held June 15 at 11:30 a.m. at the Kingsley Association, 6435 Frankstown Ave., Pittsburgh, PA 15206.
Kegg first used a manual wheelchair when she was about 6 years old. Her brother Billy, who was 9 at the time, would tease her, so her mother, Colleen, made her son spend a day in the wheelchair, which ended the bullying.
Another presenter, Helenka Foley of Bradford Woods, has attention deficit hyperactivity disorder and spoke about her passion for working with children with disabilities. Abreu suggested that she invite guest speaker Samantha Ellwood, executive director of The Woodlands, a nonprofit organization that supports people with disabilities, to her presentation.
During the interview, Foley asked her what it would take to get a full-time job there. Elwood responded that job seekers must love and respect people with disabilities. Six months later, Woodlands hired Foley as an assistant in the children’s club.
Smierciak also welcomes attendees to SAV events, introduces presenters and moderates discussions. “Watching other people present helps us look inward and think about what we can do,” he said.
From left, Jason Smiaciak’s model freight car with the Autism Awareness logo, the pocket watch he wears as part of his conductor-style outfit, and a wall displaying some of his many model trains, all in Plum on May 4. (Photo by Stephanie Strassberg/PublicSource)
“Choo Choo Boy”
Ed and Kathy Smiasiak realized a few years after their son Jason was born that something wasn’t right: He didn’t talk until he was 18 months old, and didn’t walk until he was nearly 2. He would play next to other children, but not with them.
His interest in trains began when he saw “Thomas the Tank Engine” on television at age 3. His parents took him to Horseshoe Curve in Altoona to see the Conrail trains. Reluctant to get off the train, he threw his sippy cup on the dashboard.
When he was six years old, his family visited the Strasburg Railroad in Lancaster County, which sparked his interest in steam locomotives and led to him being teased at school.
It looked great on social media, but after eight months living in Pittsburgh, I started looking west for better public transportation, tenant treatment, and health care.
He made a gulping noise as he walked down the hallways, and students called him “Choo-Choo Boy.”
But that hasn’t dampened his love of trains: He’s sat in the driver’s seat of a steam locomotive three times in Strasbourg. Donning his engineer’s hat, Smierczak beams with joy as he listens to the heat of the boilers, the whoosh of the steam cylinders and the smell of burning coal in the air. But it’s the throttle that he enjoys most.
“When you have your hand on the throttle, you can feel how much power the engine has, how much power you’re putting into the cylinders,” he said, excited by the memory.
After seeing Titanic, Smierciak found a second love: music. He attended Notes from the Heart music camp in The Woodlands, where Abreu helped him develop his voice. He sang in a former rock band of autistic musicians called the Flying Sock Monkeys. He now plays at Oakmont United Methodist Church.
He said music helps calm him down.
Model trains roared across illuminated tracks on display at Jason Smiaciak’s home in Plum on May 4. (Video: Stephanie Strassberg/PublicSource)
Steve Wickersham, a Tallahassee, Fla., native and former steam locomotive restorer, guided Smierciak’s latest presentation. Wickersham appreciates Smierciak’s knowledge and passion for railroads, but doesn’t consider him a “rivet counter” — a railroad enthusiast obsessed with esoteric knowledge. He credits SAV for giving Smierciak the opportunity to pursue his interests, develop his skills and connect with others.
Smierciak drives himself to his full-time job at Bayer in Indianola, where he packs and ships medical equipment. Since Smierciak started at SAV, his mother has watched him grow in other areas of his life, like making his own bed. “He doesn’t need us to hold him back from doing things,” his mother says.
Advocating for others
Dori Oatman of Hampton decided to learn about disabilities after her daughter, Emily, was born with Down syndrome, and her son, Joe, was diagnosed with autism at age 8.
Her mother is the training director for leadership education in neurodevelopmental disorders. [LEND] The University of Pittsburgh’s LEND Center is a program that teaches students how to support families and their children with disabilities. LEND programs are federally required to teach advocacy and engage with families, she said.
“From a parent’s perspective, we’re not always going to be here for our kids,” she says. “Kids will grow up and our parents will be gone, but kids still need to be able to express their needs and wants.”
When Joe Oatman was younger, he struggled to make eye contact with people, would stand too close to them, interrupt them, and flap his hands. “I didn’t have many friends growing up,” he recalls. He went on to the University of Pittsburgh, where he majored in psychology. He now works at the LEND Center, helping autistic students with academic and behavioral challenges.
Many SAV members, like him and Smierciak, expressed a desire to help other people with disabilities. “You can spend your whole life working for yourself,” Dori Ortman said, “but real change happens when you’re able to advocate for the benefit of everyone.”
Miss Congeniality
Alicia Rose, 28, of Cranberry, gave her SAV presentation about being crowned Miss Congeniality in a beauty pageant for people with disabilities and also spoke about her passion for art. She especially likes to paint sky and seascapes, as well as design coffee mugs, seasonal cards and jewelry.
“When I’m feeling anxious, I find that sitting down and doing art helps calm me down,” Rose says.
Rose was born with DiGeorge syndrome, which causes hearing loss, cleft palate, speech delays, poor muscle tone and learning disabilities.
Her mother, Tammy, said Alicia was ignored at school. “She would fall asleep in class because she was trying so hard to concentrate, read lips and remember information,” Tammy Rose said. “It was mentally hard on her.”
Participating in SAV helped Alicia Rose overcome her shyness. “Through Self-Advocacy Voice, I have made more friends, learned more about other people with disabilities, and become more understanding and compassionate,” she says.
A pin and bracelet in memory of Jason Smiasiak’s friend, Ciara Hasselman, a Riverview High School student who was killed by a train in Plum in 2016. (Photo by Stephanie Strasberg/PublicSource)
Train Memorial
Smierciak’s love of trains was put to the test eight years ago when he lost his best friend. Ciara Hasselman was jogging when she strayed from a rocky path and fell onto the tracks just a five-minute drive from Smierciak’s home. She was listening to music with headphones and didn’t hear the locomotive’s horn as it crashed into her. She died at the age of 17.
“It was heartbreaking,” Smierciak said. “Just because one of my friends won something I love, it will never take away from my faith, interest or passion for trains.”
At the May 18 SAV presentation, Smierciak proposed a complete restoration of the 220-ton steam locomotive, Reading 2101, which would cost about $7 million and take about seven years. He wants to run the locomotive as a track safety education tool in Sciarra’s honor.
“Sometimes the best we can come up with is something we can only dream of,” he said.
Bill Zlatos is a freelance writer based in Los Angeles. He can be reached at [email protected].
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