SDSU professor tells how caring for child with cerebral palsy changed his life

Joel Henderson recently called pop singer Shaun Cassidy to find out if Henderson’s daughter, Demra, who has cerebral palsy and loves listening to music, could meet him at the concert he’s giving in El Cajon in January.

Henderson did the same thing about 45 years ago, when Demra was 15 and Cassidy was a teen idol. He pushed his daughter in her wheelchair more than 100 miles to Los Angeles to get Cassidy’s attention. It worked on their second trip to L.A. They got an invitation to Cassidy’s house. Henderson wanted to show his daughter that anything is possible — no limits, even if she has a wheelchair and can’t move much.

Henderson, 86, professor emeritus at San Diego State University, has been an advocate for people with disabilities since Demra was born and believes that helping his daughter face her challenges changed his life for the better. He wrote about their journey in “The Book of Demra: A Life Saved — A Life Transformed.”

The book tells how Henderson, who at one point was almost dead after overdosing on drugs, saw a new purpose in life: to care for his daughter, who was born with severe cerebral palsy.

“It was after Demra was born that I realized I could not do what was needed using drugs and then stopped. I had tried to stop many times before and had given up trying. That is how I knew it was Demra that had saved me,” Henderson said.

When Demra was two months old, doctors said she should be institutionalized. They said she would never be able to do anything or say anything. But that didn’t sit well with Henderson and his wife. He spent his life defying that prediction and showing that his daughter could lead a meaningful life that had a purpose. In doing so, Demra helped others see hope and possibilities.

“People see Demra and her limitations and they see she’s happy and then they see their own limitations in a different light — we all have limitations,” Henderson said.

The book tells stories of Henderson’s life before Demra and after — from dropping out of high school and pursuing a hedonistic life — to finding purpose in caring for his daughter and leaving behind his old life, going back to school and eventually becoming a professor at San Diego State University in the School of Public Affairs.

Some stories are told through the eyes of Demra. “I have put it as she would have if she had written it herself,” said Henderson, who along with family and caregivers, are able to understand Demra, even if her speaking is not always clear to others.

“My father took it upon himself to be my arms, legs, and voice, and for the first time, he knew why he was on this earth. For six or seven years, I rode on his shoulders wherever we went. My communication with him grew even though I was not verbal,” Henderson wrote on behalf of Demra in his book.

Henderson has been set on proving to his daughter and everyone else that the sky’s the limit no matter how many hurdles there are. Over the years, Demra, now 60, defied the odds again and again, bouncing back from life-threatening illnesses, starting a baking business with a caregiver, called Demra’s Delights, working at a restaurant folding napkins (using a special tool), meeting backstage with Hollywood stars, going ice skating with her wheelchair and spearheading a skating session for people with disabilities.

“Look at the stories, they didn’t happen by chance. Some force helped me to be her arms and legs and turn my life around because she needed me,” Henderson said. “I went through a spiritual transformation.”

Fast forward 60 years to a recent Saturday morning and Demra is sitting in her wheelchair at the welcome table for a fundraising event for nonprofit GiGi’s Playhouse San Diego, which provides free educational, therapeutic and career programs for folks of all ages with Down syndrome. She is a greeter. She doesn’t say much, but everyone loves it when she smiles.

“Demra is often the first face people see when attending a GiGi’s event and she brings a positive energy to all she does as a volunteer,” said Laura Bellizzi, board member at GiGi’s Playhouse San Diego.

Demra loves to volunteer. She volunteers for United Cerebral Palsy, ARC of San Diego and GiGi’s Playhouse, among others. Sometimes, she helps out by welcoming folks to an event or handing out donuts–she can’t move her arms much, but she’s there smiling.

“Demra is always willing to help us and always has a friendly face and is welcoming to everyone. She’s an example of how people with disabilities can do things and make a difference in the world,” said Jennifer Candelario, vice president of GiGi’s San Diego.

Ask her why she likes to volunteer and her eyes look straight at you and she says, “Hap.” It makes her happy. Does she like to meet people–she nods, “yes.”

“She gives back in her way,” said Marissa “Rissa” Chavez, a rehabilitation counselor with a specialization in cognitive disabilities, who is Demra’s primary caregiver. Chavez is site manager at GiGi’s Playhouse Down Syndrome Achievement Center, San Diego, where Demra volunteers when she is not participating in one of ARC of San Diego’s programs for community members with disabilities. Demra also participates in the In-Home Supportive Services Statewide Authority Advisory Committee, giving her perspective on support services, and assists on the San Diego People First Committee.

“She’s a great part of the community which fosters acceptance of all,” said Karen Falk, founding president of GiGi’s Playhouse San DIego.

“Demra finds her own way to interact with others. Sometimes people can’t understand her, but she understands them and she doesn’t let disability get in her way — her motto is “Life without Limits.” She’s patient and people are drawn to her,” Chavez said.

Demra has yet to hear back from Cassidy, but anything is possible.