Now Jensen is engaged in another battle—a fight for her own life. Her heart ailment has worsened, and last January doctors told her that she needed a heart-lung transplant or she would die. So far, though, no hospital will agree to give her the complex $250,000 operation. Stanford University Hospital administrators rejected Jensen's request in March on the grounds that Down patients are not "appropriate candidates." In July, in a letter to Dr. Philip Bach, Jensen's cardiologist, doctors from the University of California, San Diego (UCSD) refused her because, they wrote, she is "limited in her ability to have recall and memory.... We are left with great concern for her ability to...adhere to the medical regimen." A prime consideration, medical officials say, is the scarcity of donor organs: Of 348 heart-lung candidates nationwide last year, only 71 received the double transplant. Jensen, who is now frail and susceptible to cold and fevers, views it differently. "I am being discriminated against because I have Down syndrome," she says. "I deserve to be treated like anyone else."
Jensen insists she should be judged not as a category but as an individual who has made her own way in the world. "They need to see how I live to understand me," she says. In fact since age 20, Jensen has lived in her own apartment in Sacramento—doing housework, shopping for clothes, cooking and paying her bills. She worked as a cafeteria aide at the state capitol until the mid-'80s, when patrons' cigarette smoke began to bother her. She uses buses to get around and takes the train alone to Oakland to visit her brother Keith, 36, a computer company comptroller, and his family. Emily Graves, 39, Jensen's attendant, whom Sandra hired when her health deteriorated three years ago, says Jensen takes her own medication and blood pressure. "To say she couldn't handle the medication is, well, B.S.," Graves says. Even a UCSD assistant professor of psychiatry, Dr. William Perry, noted that Jensen, whose IQ is high for a Down patient, "has an atypically good prognosis" to care for herself.
This is not the first time Jensen has run up against a doubting medical community. Shortly after birth, when doctors diagnosed her heart malady, known as Eisenmenger's syndrome, they followed common practice and chose not to operate because she was retarded. The decision led to her current medical crisis. They also advised her parents, Kay DeMaio and Frank Jensen—they divorced in 1979—to institutionalize her, predicting she would never function on her own. "I was lucky they didn't put me in a state hospital," Jensen says.
In fact the Jensens treated her just like her brothers Mark, now 32, a Sacramento accountant, and Keith. That meant Disneyland vacations, camping trips and mainstream schools where Sandra took special education classes and, says Mark, "interacted with 'normal' kids." Her childhood was hardly painless, though. "Kids called me every name in the book," she says, "but I kept going." Graduating in 1981 from Rio Americano High School in Carmichael, Calif., Jensen, who was inspired by the movie The Miracle Worker, later studied sign language at Sacramento's American River College. She remains close to her brothers and mother, now remarried and living in Oregon. "We talk every day," says Jensen. "She's always there for me." (Jensen no longer sees her father.)
At the core of her life is her activism. In 1980, Jensen cofounded Capitol People First, a Sacramento-based advocacy group formed by and for the disabled, and lobbied so energetically for passage of the Americans with Disabilities Act that she was invited to the White House for the signing of the legislation in 1990. For the past two years she has been a paid consultant for the World Interdependence Fund, advising families of disabled teens.
These days, though, Jensen's health is her top priority. "She's deteriorating. We're pretty much at the end of the road with medications," Dr. Bach said recently. Yet a glimmer of hope remains. Local newspaper articles and disabled-rights groups have recently highlighted her crusade, and UCSD and Stanford are now both reconsidering her case. Meanwhile, Jensen tries to remain optimistic. "I want to live my life the way I've always lived it," she says. "I've learned that being retarded just means being slow. Nobody really knows how far you can go."
MARJORIE ROSEN
JAMIE RENO in Sacramento
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- Jamie Reno.
Saved by the Bell Reunion
The hookups, the meltdowns, the memoires
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