Upholding A Legacy - Foundation – And Director – Dedicated To Serving People With Disabilities

A would-be dancer who became passionate about working with people with disabilities is following in the footsteps of a mother who began fiercely advocating for her son 70 years ago.

“I started working with the disability community when I was 19, and I have not stopped,” says Lara Ceisel, Executive Director of the nonprofit foundation named for Barbara Stone – that crusading mom.

Ceisel’s first job in the field was as a teaching assistant in a special education classroom, during a break after her first year of college.

“I felt like I could dedicate my life to this,” says Ceisel, who had planned to study dance. “I had a great purpose every time I went to work.”

She changed her major, earned a degree in special education, and began searching for a job that would offer the fulfillment she craved.

In 2008, that search brought her to YMCA Camp Greenville.

Barbara Stone’s journey had begun decades earlier when one of her three sons, Barham, was born with profound disabilities. The young mother acquiesced when doctors insisted that her son be institutionalized. But she was not complacent. She served with what was then the Greenville Association for the Retarded, eventually establishing Greenville County’s first group home and moving her son there.

In 1968, she collaborated with friends, other families and community leaders to found Camp Spearhead, now located at Pleasant Ridge County Park near Marietta and managed by Greenville County Parks, Recreation and Tourism. The camp serves children and adults with disabilities and special needs.

It was Camp Spearhead that brought Ceisel, Stone and Barham together … when Stone brought her adult son to camp … and after Ceisel became the Therapeutics Recreation Coordinator for Greenville County.

“Meeting Barbara was like meeting an idol. She was a visionary who changed Greenville. She was responsible for establishing most of Greenville’s early disability services,” Ceisel says.

“Barbara was determined and moved mountains. Think about a woman doing that in the late 1960s – going against the recommendations of doctors and the status quo.”

Stone was instrumental in creating the Greenville County Disabilities and Special Needs Board, which provides low- or no-cost services to people with disabilities and their families.

The Barbara Stone Foundation was created in 1991 as a fundraising arm of the board, now known as Thrive Upstate.

Ceisel spent more than a decade at Camp Spearhead before moving to the Barbara Stone Foundation, which continues the work and legacy of its namesake, who died in 2013.

“The needs of the disability community are important, and their voices are not heard enough. It is one of the country’s most diverse yet marginalized and hidden communities,” Ceisel says.

“This was an opportunity to take what I had learned from the families at Camp Spearhead and apply it to our community and the foundation, to help us achieve the next level of services, awareness, opportunities and education.”

The foundation had already begun to evolve.

In addition to grants to Thrive Upstate, the foundation funds a variety of projects that include RECESS (Recreation, Education, Community, Exercise, Social, and Service), a program at the YMCA of Greenville for post-high school adults with diverse abilities; Carolina Dance Collaborative, a nonprofit that takes adaptive and educational dance to people with disabilities; and Upstate-Carolina Adaptive Golf, which offers golf therapy and other programs to foster self-confidence.

In October, the Barbara Stone Foundation gave almost $32,000 to nine local nonprofits: Able South Carolina, Adaptive Pickleball, Clarity Upstate, Lions Vision Services, David’s Table, International Ballet Greenville, Prisma Health Roger C. Peace Rehabilitation, Trailhead Community Farm School, and the Upcountry History Museum.

“One of our goals is to increase our ability to grant money to organizations that provide opportunities aligned with our mission,” Ceisel says.

The foundation is growing in other ways, too.

In 2013, parents and service providers created Greenville CAN (Collaborative Action Network) and now serve on work groups.

Greenville CAN, which is managed by the Barbara Stone Foundation, has expanded to become a coalition of service providers, individuals with disabilities, families, caregivers, and professionals who collaborate and exchange ideas with the mission of making Greenville County a better place for people with disabilities.

When Ceisel was hired, she was the foundation’s only full-time employee; Chris Sparrow became the second, as program manager of Greenville CAN.

Another full-time staff member, Hadlee Hoeksema, became the job liaison for UP Employment Initiative – which helps disabled individuals prepare for employment, find jobs, and set goals toward increased independence.

UP (Upward Professionals) is personal for Ceisel.

“I’ve been in the workforce since I was 15. The minute I could start working, I did. For me it was about independence, having a purpose, and survival. I believe that anyone with the desire and commitment to work should have an opportunity,” she says.

The foundation’s third initiative is CAN Talks, created in 2019 and modeled after TED Talks.

“It’s unique, very special to Greenville. We haven’t seen it done elsewhere. We're excited to grow and share this event,” Ceisel says.

During the annual production, five or six speakers – local to Greenville – pick a topic they are passionate about or tell their own story through the lens of their disability, “but not being defined by a disability,” Ceisel says.

“We want people to understand that just because somebody is in a wheelchair, they aren't defined by that wheelchair,” Ceisel says, quoting Mark Shoop, who spoke at one of the CAN Talks. “Everyone who attends the event ... their perspective changes. It closes the gap and brings the community together. We challenge people to get comfortable with being uncomfortable.”

The initiatives further the foundation’s mission to support service providers, create services, and connect people to services and opportunities.

“The Barbara Stone Foundation doesn't work for the disability community. We work with the disability community,” Ceisel says. “There's work to do. And we want to do it. If people are willing to trust us, work with us, and move alongside us, we'll be here to lead the way.

“That's what Barbara did. That’s why what she created was so successful. It's our responsibility to carry that forth. It's a great responsibility – great in so many definitions of the word.”

This article originally appeared on Greenville News: Upholding A Legacy - Foundation – And Director – Dedicated To Serving People With Disabilities