Arthrogryposis, Art Wackett’s Story

A National Institutes of Health website defines arthrogryposis as “a group of non-progressive conditions characterized by multiple joint contractures (stiff joints) and abnormal muscle development throughout the body at birth.”

Art Wackett of Binghamton, New York, has it. “It’s a congenital birth defect,” 50-year-old Wackett said in a telephone interview. “It affects the major joints, like the elbows, shoulder, feet, and hands. Most children with it have club feet and hands.”

During his infancy, a doctor said Wackett would grow up to be a “vegetable” and ought to be institutionalized. Instead, his parents eventually enrolled him in a school for children with disabilities and then in a public high school in the ’70s as one his area’s first children with disabilities mainstreamed. All through these years, he had many foot and hand surgeries.

“I was relatively well accepted at high school,” he said. “But it was awkward. I thought I’d come across a much more mature level of student. Many had insecurities about themselves. I didn’t have many close friends there, so I withdrew and expressed myself through schoolwork.”

Over the years, he would attend college and hold several different jobs, including working for IBM, an independent living center, and a sheltered workshop.

His chief goal has always been to continue working and be employed. “I enjoy being out with people,” he said. “And I love the camaraderie of being at work and doing a good, quality job.”

After using a leg brace to walk and having a limp for years because of a dislocated hip, he started also using a cane in 1995 due to knee troubles. In 2007, he developed foot sores and spent seven months hospitalized. For the most part, since then, he has used a wheelchair to get around.

Through all the trials, he has remained committed to work. To do it, he depends on a company called Community Options to send in a person each morning to help him dress and put on his leg brace. Once dressed, he can drive himself to work.

“I had to find something to help me maintain my independence,” he said. “This is huge having someone come in to help. Without it, a person in my situation might have to be put into a nursing home. That’s what I’m trying to avoid.”

Since February, Wackett has worked as a telephone receptionist at the local Community Options office.