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Ken Howell, advocate for disabilities

Ken Howell of Eugene, Oregon, has been a volunteer advocate for people with disabilities for decades.

“My first child had spinal muscular atrophy,” said 55-year-old Howell in a telephone interview. “They said Elisabeth wouldn’t live until two, but she lived to be 20. Having her introduced me to the disabled community.”

He helped people get over the stigma of having a disability, he said. He worked with families making home adaptations, encouraged people with disabilities to use computers, and advocated with insurance companies and school districts unwilling to follow laws affecting people with disabilities.

“Then my wife received a call from a family that didn’t want their newborn child with spina bifida,” he said. Spina bifida is a spinal birth defect often resulting in paralysis that makes the child non-ambulatory.

“Her parents didn’t want anything to do with her because of it,” he said. “My wife and I tried talking them into keeping her.” The mother would have aborted the child, he said, but her physician had failed to administer a test that could have revealed the spina bifida. The Howells adopted Anna. Today, she is 18, very articulate, uses a wheelchair, and has a paying job.

All that, and now Howell has a disability.

“I’ve been diabetic for 22 years,” he said. “Three years ago, my doctor told me about a new type of laser surgery so a diabetic will never go blind when they get older. He encouraged me to have the surgery when I was young. He said my eyesight was on a slippery slope walking on banana peels.”

About six weeks after surgery, Howell’s vision began blurring. He went to another eye doctor for a second opinion, and that doctor said, “Didn’t (the other doctor) tell you that three percent of people who have this surgery go blind and we don’t know why?”

His new doctor said Howell could be totally blind in six months. If his old doctor had mentioned the risk of blindness, Howell wouldn’t have had the surgery.

“So I became legally blind,” he said. Yet three years in, he still sees well enough to walk in well-lighted places and reads with magnifying equipment. But he no longer can work at his son’s computer repair business.

His advice: “God has a plan for each of us. With being blind, even though your life is drastically different, it’s not over.”



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