All aboard for self-advocacy: Group helps people with disabilities grow confidence in their talents

Bells ring and horns blare from a 17-by-9.5-foot platform in a Plum basement. Recorded chatter between cab crew and station crackles in the air. Five model trains with rods churning rumble across a bridge and through tunnels with one locomotive chugging at a simulated speed of 36 mph.

Among a collection of about 80 action figures roam cows, horses, pigs and goats while firefighters douse a blaze, and four skaters glide on a frozen pond. One locomotive puffs the scent of burning logs.

Amid this bedlam of smoke, sound and motion stands Jason Smierciak, 29, attired like a railroad engineer in a pink bandana, denim jacket, blue jeans and a casual shirt from which dangles the chain of a gold railroad watch, a flower-embossed gift from his grandfather. Smierciak bears the calm of an airplane pilot during a storm.

His love of trains has sometimes posed social problems because Smierciak has autism, a neurodevelopmental disorder that often involves difficulty in communicating and building relationships with others, repetitive behavior and a specialized interest in arcane subjects. However, his involvement with Self-Advocacy Voices, a Highland Park-based group, allows him and others with disabilities to talk about their interests and stand up for themselves.

“ A lot of time people with disabilities get their talent shut,” said Lilly Abreu, director of SAV . “A lot of times they don’t have a voice, and I wanted to give them a place where they could share their voice.”

Speaking up

Self-advocacy sprang from the civil rights movement as people with disabilities chained themselves to buses and crawled up the steps of the Capitol to protest lack of access, said Kaye Anderson, operations manager of Self Advocates United as 1. It’s a Pennsylvania group serving people with developmental disabilities.

“We speak up because we don’t want and need others to speak for us and lead us in a direction we don’t want,” explained Alexa Brill, president of the group’s board. She has cerebral palsy.

Abreu, a linguist and singer of Latin music, founded the independent SAV in 2021 when she noticed that her students at a music camp needed a way to meet and express themselves during the shutdown of COVID-19. She started biweekly Zoom meetings at which one member speaks about an area of interest while others listen and ask questions.

SAV, which hopes to acquire nonprofit status, serves about 60 persons ranging in age from 18 to 70. Of those, perhaps 25 take part in presentations on a member’s interest or sessions on personal growth. The disabilities of members and participants include autism, cerebral palsy, Down syndrome and mental health issues.

Maura Kegg of Ross gave the group’s first presentation on Jan. 16, 2021. She discussed her life in a wheelchair with cerebral palsy and scoliosis.

“I don’t let that get to me,” she said. “I focus on good things. I don’t focus on the bad about it.”

Self-Advocacy Voices

For more information, visit selfadvocacyvoices.org .

The organization’s summer social is scheduled for 11:30 a.m. June 15 at the Kingsley Association, 6435 Frankstown Ave., Pittsburgh, PA 15206.

Kegg used her first manual wheelchair at about age 6. Her older brother, Billy, then about 9, made fun of her. Their mother, Korene, made her son spend a day in the wheelchair. That ended his bullying.

Another presenter, Helenka Foley of Bradford Woods, has attention deficit disorder and hyperactivity. She talked about her passion for working with children who have disabilities. Abreu suggested she invite Samantha Ellwood as guest speaker for her presentation. Elwood is executive director of The Woodlands, a nonprofit group that helps people with disabilities.

During the session, Foley asked her what it would take to get a full-time job there. Ellwood responded that a job candidate has to love and respect people with disabilities. Six months later, The Woodlands hired Foley as an assistant to a children’s club.

Smierciak also welcomes participants to SAV events, introduces presenters and moderates discussions. “Watching other people’s presentations helps us to reach into ourselves to see what we may be able do,” he said.

‘Choo Choo Boy’

Ed and Cathy Smierciak knew their son Jason was different within a few years of his birth. He did not talk until he was 18 months old or walk until he was nearly 2. He played next to children but not with them.

His interest in trains began at age 3 when he watched “Thomas the Tank Engine” on television. His parents took him to Horseshoe Curve in Altoona to see the Conrail trains. Upset at leaving the trains, he threw a sippy cup at the dashboard.

His family visited the Strasburg Rail Road in Lancaster County when he was 6. That launched his interest in steam locomotives and led to taunts at school.

He chugged and hissed while walking the hallways. Students called him Choo Choo Boy.

But that did not curb his love of trains. He has enjoyed three experiences in the cab of a steam engine in Strasburg. Wearing an engineer’s hat, Smierciak beamed amid the heat of the boiler, the steam cylinder hissing and the air smelling of burning coal. But the best part is always the throttle.

“When your hand is on the throttle, you can feel how much power is in the engine and how much power you give to the cylinder,” he said, excited by the memory.

After watching Titanic , Smierciak found a second love – music. He attended the Notes from the Heart music camp at The Woodlands where Abreu helped develop his voice. He sang with a former rock band of autistic musicians called the Flying Sock Monkeys. He performs now at Oakmont United Methodist Church.

Music, he said, helps calm him down.

Model trains run around the glowing tracks of Jason Smierciak’s personal display on May 4, at his home in Plum. (Video by Stephanie Strasburg/PublicSource)

Steve Wickersham, a retired restorer of steam trains from Tallahassee, Florida, mentored Smierciak for his latest presentation. He admires his knowledge and passion for trains but does not consider him a “rivet counter” – an uber-enthusiast with an annoying knowledge of railroad esoterica. He praises SAV for giving Smierciak a chance to pursue his interest, develop his skills and interact with other people.

Smierciak drives himself to his full-time job at Bayer in Indianola where he packages medical equipment for shipment. Since he joined SAV, his mother has seen him grow in other aspects of his life, like making his bed himself. “He’s not needing us to hold his hand to do things,” she said.

Advocating for others

Dori Ortman of Hampton thrust herself into learning about disabilities when her daughter Emily was born with Down syndrome. Her son Joe was diagnosed with autism when he was 8.

The mother is training director of the Leadership Education in Neurodevelopmental Disabilities [LEND] Center at the University of Pittsburgh, a program that teaches students how to help families and their children with disabilities. She said the federal government requires LEND programs to teach advocacy and reach out to families.

“From my parent perspective, we’re not always going to be here for our kids,” she said. “Your child is going to grow up and you will be gone at some point. They still need to be able to express their needs and what they want.”

As a youth, Joe Ortman had trouble making eye contact, standing too close to people, interrupting them and flapping his hand. “I didn’t have a lot of friends growing up,” he recalled. He went to the University of Pittsburgh and majored in psychology. Now he helps autistic students with academic and behavioral problems at the LEND Center.

Many members of SAV like him and Smierciak expressed a desire to help others with disabilities. “You can go your whole life advocating for yourself,” Dori Ortman said, “but the real change takes place when you can advocate for the greater good of all.”

Miss Congeniality

Alicia Rose, a 28-year-old resident of Cranberry, gave one SAV presentation about being named Miss Congeniality in a beauty contest for people with disabilities and another about her passion for art. She draws and paints, especially scenes of the sky and ocean, and designs coffee mugs, seasonal cards and jewelry.

“When I have high anxiety, I sit down and do art, and that calms me down,” Rose said.

Rose was born with DiGeorge syndrome, a condition that has caused her hearing loss, a cleft palate, delayed speech, low muscle tone and a learning disability.

Her mother Tammy said she was ignored in school. “Alicia was falling asleep in class because she was trying so hard to pay attention, read lips, retain the information,” Tammy Rose said. “It was just mentally hard on her.”

Joining SAV has helped Alicia Rose overcome her shyness. “I find I’m making more friends through Self-Advocacy Voices and learning a lot more about other disabled (people) and being able to understand it more and be more understanding,” she said.

Train memorial

Smierciak’s love of trains was severely tested eight years ago by the loss of his best friend . Ciara Hasselman was jogging when she veered off a rocky patch of the trail and onto the railroad tracks just a five-minute drive from his home. Wearing earphones to listen to music, she could not hear the horn blast from the locomotive that struck her. She died at age 17.

“It was heart-breaking,” Smierciak said. “Just because one of my friends was hit by my favorite thing, I never lost my trust or interest or passion for railroads.”

In his SAV presentation on May 18, Smierciak proposed the full restoration of the Reading 2101, a 220-ton steam locomotive. That would cost nearly $7 million and take about seven years. He wants to run it to teach railroad track safety in honor of Ciara.

“Sometimes the best things that we can ever think of are the things we can only dream about,” he said.

Bill Zlatos is a freelance writer in Ross and can be reached at billzlatos@gmail.com .

The post All aboard for self-advocacy: Group helps people with disabilities grow confidence in their talents appeared first on PublicSource . PublicSource is a nonprofit news organization serving the Pittsburgh region. Visit www.publicsource.org to read more.