Bush Administration Names Young Disability Advocate to Head Government Research Agency
By Blair Anthony Robertson (reprinted by permission from the Sacramento Bee)
Steven Tingus, who was born with muscular dystrophy and spent much of his life overcoming obstacles, has received a presidential appointment as director for the National Institute on Disability and Rehabilitation Research, a unit within the U.S. Department of Education.
Beginning Oct. 17 in Washington, D.C., Tingus will run an office of 45 civil servants that oversees research and pushes for new policies to promote inclusion and access for people with disabilities. He will also serve as chief adviser to Robert Pasternack, assistant secretary for special education and rehabilitative services.
Tingus, 38, grew up in Davis, Calif., and worked for several years in Sacramento.
He's packed and ready to go to Washington, with file boxes labeled and stacked high in the kitchen and living room. Just the other day, the FBI showed up for a two-hour security interview, then proceeded to canvass his Davis neighborhood to ask about the little man who found success against all odds.
For years, Tingus has dreamed of taking his talents to the nation's capital, though at times his extreme health concerns and need for round-the-clock care made such a goal seem farfetched, even reckless. He has a clunker for a body but a heart that won't quit.
The strain of long work days could make him ill, even kill him. The weather -- hot, humid, cold, rainy -- could confine him to a sickbed. But he says he wants to tackle this, his greatest challenge, even if he is tempting fate.
The prestigious job appointment, months in the making, is a personal and professional dream come true. Because Steven Tingus is, for someone with his disease, an old, old man. He has outlasted the naysayers and outlived the law of averages. People with his kind of muscular dystrophy usually die during childhood, and life expectancy is not much beyond 20 years.
Tingus has limited mobility in his arms and legs. He gets around in a motorized wheelchair and uses a voice-activated computer. During the day, each breath becomes more of a strain until he is all but exhausted at 8 p.m. He must be hooked up to a respirator at night. His throat must be suctioned each evening or he could choke in his sleep. He worries every time he eats that he might choke on his food. When he catches a cold, the cold nearly kills him. When it rains, he frets. When it's cold, he worries. He needs help getting dressed, taking a shower.
Aware that Washington's weather is much harsher than Sacramento's, that the demands of the job could sap his strength day by day, Tingus says he is nevertheless prepared to plunge forward.
On a professional level, he is headed to Washington to make a difference. On a personal level, he is leaving the nest, saying goodbye to Mom and Dad and finally heading out into the world on his own.
For all that he has accomplished -- earning a doctorate, being an adviser to Gov. Pete Wilson, making public policy -- Tingus has never been able to truly experience life as an independent adult. His parents have always been there to care for him, catching him when he falls and, for the most part, helping him outlive all the gloomy medical expectations.
But Tingus is branching out on his own at last.
"This is the pinnacle for me," said Tingus, seated in his de facto home office. His chair at the kitchen table has worn a hole in the floor after three decades of sliding back and forth, and the varnish has rubbed off the chair's arms. "Each stage in my life I have been developing my skills, and this position is where my skills will be tested."
Says his sister, Tina Harris: "This is such a wonderful opportunity for anybody, but especially for Steven, given his physical limitations. He has proven to everybody that nothing is going to get in the way of his professional and personal goals."
No one doubts Tingus will thrive in the land of power, politics and policy. But his family wonders how he can make it happen, how he can branch out on his own when it has been Mom and Dad who have kept him alive all these years.
In Washington, Tingus will rent a wheelchair-accessible apartment for $2,176 a month. He will pay another $1,500 a month for a live-in caregiver. It will be a Herculean task that his parents suggest is impossible.
"Somebody's going to have to be a superstar to look after him," said Steven's father, Jim Tingus, who plans to spend up to a month in the nation's capital to help with the transition.
For the past six years, Jim has driven Steven from Davis to work in Sacramento in the morning and picked him up at night -- 65 miles a day. He dressed him every morning, arguing with his fastidious son over which tie to wear with which shirt. Jim carried Steven in and out of the bathroom, loaded him into the car, vacuumed out his trachea and hooked him to the ventilator. In earlier years, Steven's mother did most of these chores.
"It's going to be tough," Jim said with a shrug and a touch of sad sarcasm. "Who am I going to fight with besides him?"
"He's going to have a hard time letting go," Steven said of his father, "because of his need of being needed."
To see father and son together is to watch a rare partnership in action, complete with love, fondness and all the usual quibbling.
"I don't praise him a lot," said Jim. "But I'm so proud of him I can't see straight."
Steven Tingus recently resigned from his job at the California Foundation for Independent Living Centers Inc., where he provided an information clearinghouse for the state's 6 million people with disabilities. But through all the high-profile success, Tingus lived with a secret that wore on him: He was not independent himself. He relied on his parents for survival and they seemed to be almost territorial in insisting that only they knew how to care for him. It was a relationship that may have kept him alive, but it stunted his growth in other ways.
"This job," said Tingus, "offers me the opportunity to test my abilities, to live on my own and manage my personal care needs without relying on my family. It will lead to developing my own identity. Until now, I've always been thought of as Jim and Joanne's son. Back in D.C., I'll just be thought of as myself."
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