Disabled couple have language all their own
Published: April 23, 2006
On Valentine’s Day, Linda Van Deusen used a borrowed fork to feed her husband turkey and sweet potatoes.
It also was a dropped fork — one the Van Deusens’ service dog, Minnie, had picked up with her teeth.
It was their version of romance, an awkward wheelchair waltz with Linda taking the lead and John following as best he could.
It’s been that way since 1995, when John fell off a wheelchair lift and suffered a head injury. His muscles are captive to the spasms caused by dystonia, a movement disorder that he and Linda suffer.
Since her retirement from state government in 2000, Linda Van Deusen has filed dozens of lawsuits under the Americans with Disabilities Act — the 1990 federal legislation that guarantees the handicapped access to public buildings.
But love, marriage and life came first for the Van Deusens. The litigation came later.
John can’t talk. He occasionally can hold his head up, but it’s usually just to roll it to the other side of his shoulders.
His body is twisted into an S-shape because his muscles aren’t strong enough to support him. His head leans to his left, perpendicular to his crooked body.
Linda can walk, but only short distances, such as from her carport to her front door.
They met in New York in 1975 at an international convention for dystonia patients. Linda lived in Pennsylvania but moved to West Columbia and the Wil Lou Gray Opportunity School the next year. John was in Washington, D.C., where his father was a Lutheran minister.
They fell in love through letters and were married a few years later.
In 2005, Linda had surgery and was in the hospital. That meant John had no one to care for him at their home. Someone — Linda doesn’t know who — called the Department of Social Services. They threatened to put John in a nursing home.
“Linda has lived with that, fighting the system, feeling neglected and rejected in the world at large. It creates in her, this passion that you see,” said the Rev. Barry Gray, associate pastor at Shandon Baptist Church and Van Deusen’s pastoral counselor. “She’s fighting for a quality of life that you and I take for granted every day.”
Another local church rallied to the couple’s cause and scheduled members to stay with John. When Linda came home, the volunteers stopped.
In May 2005, Linda yielded, exhausted from taking care of her infirm husband. John’s church found him a place in a White Rock nursing home.
Now, Linda loads up her 1997 Econoline 350 van twice a week and drives to White Rock to visit and take care of her husband at Lowman Home.
John carries a board with everyday phrases written on it, such as “yes” and “no” and “hungry.” It’s mainly for the nurses.
John and Linda speak through an abbreviated sign language. He grunts to get her attention and, usually, she knows what his grunts are about. It’s when she doesn’t know that he starts using his hands.
“It’s 100 percent give,” Linda said about her marriage. “But the preacher said for better or worse. I guess I took him seriously.”
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