Larry Opinsky

From left, Lilly’s guide dog, Dixon, Lilly, Sam, Larry and Joyce Opinksy. Photo: Kristi Foster

By David Baugher, Special to the Light

For Unsung Hero Larry Opinsky, making a difference in the world at large is also about making a difference much closer to home—one that affects his daughter.

“What I can do is make the world a better place for her and for her quality of life,” he said. “I grew to understand that I have the time and ability to affect change and if I can help the whole state become better at how it views people with disabilities, to create a better quality of life for them, then my daughter’s life will also be better.”

Opinsky’s daughter, Lilly, has Rett Syndrome, a genetic disorder generally considered to be a form of autism. Like many who live with the condition, the 12-year-old is non-verbal and uses a wheelchair.

Opinsky, 45, is heavily involved trying to make the community more accessible and accepting towards those who live with disabilities. He is chair of Missouri Protection & Advocacy Services, a group established in the late 1970s to help preserve the rights of the disabled and provide a voice for their interests. It works on everything from preventing abuse and neglect to helping with information and referral services to assisting with Social Security benefits and denial of service issues.

In addition, the Chesterfield resident is a former president of the Parkway Parent Advisory Council for Children with Disabilities. Currently, he serves as vice president of the organization, which works with Parkway administration and the Special School District on behalf of special needs students.

He also is active in helping with local events held by the International Rett Syndrome Foundation of which his wife Joyce serves as Missouri regional representative.

“Whatever she needs me to do, I do,” said Opinsky, who runs a family footwear business with his wife. “I try to do fundraising through my business, through friends and business associates and all sorts of sweat equity. Whatever needs to get done.”

Opinsky recalled how his own view of disabilities evolved beginning with a woman named Sharon whom he met at a class. Though her cerebral palsy made her speech difficult to make out, he came away impressed by her intelligence and goal-focused nature.

“Even though I couldn’t always understand what she was saying, she had a lot to say and it was filled with hopes and dreams,” he said. “I realized that my daughter does too and that was an unbelievably empowering moment.”

It’s a moment he wishes more people could experience.

“There is still a lot of shame and protectionism,” he said. “That does not help the individual and it certainly does not help the community at large to grow, understand and appreciate that every single person in society has something to offer.”

Facilitating that process defines Opinsky’s work on disabilities issues. It’s something that carries over to his Judaism, which he said was important to keeping him centered.

“We live in a dynamic and often difficult world,” he said. “I often reach into some of my spiritual remembrances, whether they are services, songs or prayers, in times of difficulty to calm me and bring me to the center of things as opposed to letting the world get on top of me and everyone around me.”

Opinsky, who was born in Hartford, Conn., but has lived in the St. Louis area since childhood, also worked with others last summer at Congregation B’nai Amoona to revamp aspects of the synagogue, making it easier for individuals like Lilly to play an active role in congregational life.

“A large portion of the bimah is now accessible and we look forward to hopefully being able to use it as much as possible,” he said. “She uses a wheelchair and she can now roll up and be next to the Torah for the first time. That’s a very proud moment for us.”

Opinsky said his work is deeply rewarding as it allows him to meet and help so many others. There is a cost however.

“It’s also extremely frustrating to be so far into the political framework and understand that there are large parts of the population in the metro area and outstate that have a very archaic view of the abilities of people with disabilities and expectations,” he said. “I get very disappointed when I see millions of dollars in state and federal money going to programs that are little more than a babysitting service for someone with a disability.”

Opinsky said it is important for people to become involved in more than simply taking care of legal issues.

“People have not just civil rights that must be honored but they also have dreams and hopes,” he said. “Just because they need special help doing it doesn’t mean they have to be confined or restricted to locations that are the most cost effective way to receive their assistance or that they shouldn’t earn a regular wage for doing the work they do.”

Lee Notowich, a friend who has kept in contact with Opinsky since the pair were together at Camp Sabra, lauded Opinsky’s dedication.

“He’s patient, he’s consistent, he’s always there. He’s just a solid guy,” said the Memphis native who now lives in California. “He brings calm and levity to challenging and difficult situations.”

Larry Opinsky

AGE:  45

FAMILY:  Married to Joyce, a son and a daughter

HOME: Chesterfield

OCCUPATION:  Managing Partner – Gateway Shoes LLC

FAVORITE PASTIMES: Cooking, gardening, live music and ‘anything outdoors’