The rights of the retarded

Alice worries about becoming a grandmother again. It probably would mean spending the rest of her life caring for another child. Her daughter is 21 years old and resides in a Florida group home. She is learning to be an independent young woman. She holds two jobs now, and is getting curious about boyfriends and babies. When her brother brought a baby home, she immediately wanted one of her own.

It is unclear whether she is able to understand how pregnancy occurs. She was born with Down's syndrome, an extra chromosome that retarded her mental development.

To her mother's knowledge, she has never had sex. Kissing is still an unusual experience for her. A man did fondle her at work one day. She told this to the driver who takes her to and from her group home, and the man was fired.

The incident reassured Alice that her daughter knows enough to resist being molested. It also underscored her fear that someday her mentally retarded daughter will get pregnant.

In a recent interview at the national Association for Retarded Citizens conference in Tampa, Alice expressed a dilemma that many parents in the association face: how to respect their child's rights without becoming reluctant guardians of their grandchildren.

"That's a thing that I live with every day. I definitely do not want my daughter to have children, and yet I have not opted to have her sterilized," said Alice, whose name has been changed to protect her daughter's privacy.

If her daughter were to have a baby, Alice said, "I would have another child to raise. I'm 59. I don't want another baby."

The case of Jane Doe

To date, the U.S. Supreme Court has not defined when a parent or guardian can petition to have a retarded daughter or son sterilized, and legal standards on involuntary sterilization vary from state to state. The Association for Retarded Citizens argues that this choice should be made by retarded people themselves, regardless of their mental capacity.

In Florida, standards have not been set either by law or the courts, but that is likely to change soon. A single mother who lives in a Boynton Beach mobile home with her 15-year-old mentally retarded daughter is seeking court permission to have the girl's Fallopian tubes tied. The mother is being represented by West Palm Beach lawyer Peter A. Sachs. The Legal Aid Society of Palm Beach County has been appointed to represent the daughter. A hearing is scheduled next month in a Palm Beach County circuit court, and no matter who wins there, the case is likely to be appealed.

In court, the girl is identified as Jane Doe. According to her mother's lawyer, she is microcephalic _ born with an unusually small head _ and suffers from cerebral palsy and frequent seizures. Her IQ is in the 40s, low enough to raise doubts about whether she could comprehend and consent to sterilization surgery. She does not know her telephone number or

address. She knows her name but cannot spell it.

She has "no real concepts of life and death," or of childbirth, Sachs said. "When asked whether she wants to have a child, she says yes. When asked how, she says you have a boyfriend, you kiss, you get married, you have a baby. She doesn't want to get pregnant, but she would like to adopt, she thinks it would be fun. She says " 'dopt."

The girl apparently has been molested once. But "that's not really a central focus of our case," Sachs said. "The main concern of my client is the health of her child. We don't simply have a case of a mother trying to sterilize her mentally retarded daughter. The girl suffers from seizures on a daily basis. Sometimes multiple seizures daily."

If she were pregnant, "the seizures themselves could cause complications for the fetus. The hormonal effects of a pregnancy could have fatal effects on her because of its effects on her seizure disorder. Seizures during pregnancy can be very dangerous," he said.

For now, the daughter's lawyers are not presenting their side of this case publicly. Citing her right to privacy, they have asked the court to prevent the media from examining the case records or attending hearings. Thus, any discussion of the case "would contradict our position," said Bob Bertisch, executive director of the Legal Aid Society of Palm Beach County.

Others who oppose involuntary sterilization say that reliable, long-term contraceptives soon will be on the market, offering a safe alternative to surgery, and that people who are seriously retarded and physically handicapped are unlikely to become parents anyway.

But such cases do occur. In Texas, someone raped and impregnated a 32-year-old woman crippled by spinal meningitis. She has seizures, and speaks only a few words. The state institution where she resides failed to arrange an abortion. Now she is 7 months pregnant.

A modern question

In the United States, retarded children are no longer condemned to abbreviated lives in state institutions. They are staying home, attending public schools, getting better medical care and living longer, and adapting in ways that often surprise their parents.

Modern parents are helping retarded children learn to think for themselves and be proud of themselves, to feel they are loved no less than other children. Then they confront a modern question: What if my daughter, who struggled to tie her shoes and spell her name and recognize street signs, gets pregnant and chooses to keep the baby?

If she is even mildly retarded, her parents probably would have to help raise the child, and that may be just one of their concerns. If the cause of her retardation is genetic, the gene might be passed to the baby. If she is physically handicapped, pregnancy might risk her life as well as the baby's. If she lives in a small town, there may be little help available from social service agencies.

Parents of mentally retarded sons also face such concerns.

Les Crosby's 13-year-old son, Ryan, was born with Down's syndrome. Ryan goes to school in Tallahassee, and is "probably functioning at a 7-year-old level," Crosby said.

The condition likely has made Ryan sterile, Crosby said, as until recently there was no reported case of a man with Down's syndrome fathering a child. Crosby is thankful for that because he doubts that Ryan could be a capable parent. "He's great with kids. He loves babies. But if the baby got a cold, if something came up like that, he couldn't handle it."

A generation ago, few people worried about the consequences of retarded children having children of their own. "The assumption was, if they're mentally retarded, why even bother?" said Stephen Greenspan, an educational psychologist in Connecticut who works with retarded parents. Now, growing numbers of retarded adults are deciding to have children, he said, and "I've seen some who need little support and are doing a fine job."

He has met others who could not perform the basic tasks required to protect the health of a small child, such as draining the bathtub, giving the proper dose of medicine and remembering not to leave the baby unattended. In one family he is working with, "the mother doesn't know how to cook. She has problems with her own hygiene," he said. In another case, Connecticut created a group home for one mother and her child because the state was afraid to leave them alone. "The official cost was $400,000 a year," he said.

Greenspan thinks most mentally retarded adults cannot become adequate parents. He said if he had a retarded daughter, he would encourage her to be sterilized, and if she became pregnant, to have an abortion or allow the baby to be adopted. Yet he would never counsel the involuntary sterilization of a mentally retarded person.

"This is a class of people who, over the years, have had their rights violated in very extreme ways," he said.

"Mississippi appendectomy"

Government attitudes toward involuntary sterilization programs have varied greatly. At one extreme in today's world is the Chinese province of Gansu, which regards its 260,000 mentally retarded residents as a social burden and plans to sterilize most of them by the end of next year. At the other, Canada's highest court has ruled that parents and guardians can consent to sterilize a mentally handicapped person only to protect the person's health.

In the United States, mentally handicapped persons once were sterilized with so little concern for their consent that the operation was nicknamed a "Mississippi appendectomy." The attitude of the era was summarized aptly by Oliver Wendell Holmes, a U.S. Supreme Court justice who believed genetic breeding could improve the human race. In a 1927 ruling that upheld a Virginia law permitting sterilization of people in state institutions, Holmes wrote: "Three generations of imbeciles are enough."

Fifty-seven years later, Virginia agreed to settle a lawsuit on behalf of 7,200 men and women who had been sterilized without their knowledge or consent by its institutions.

Sterilizing a mentally retarded person is no longer a casual act. Institutions, doctors, even parents have been sued by mentally retarded people who learned they had been sterilized, and states have broadened protections against performing this operation without the patient's understanding and consent.

In states where involuntary sterilizations are still permitted, the standards are much stricter. The New Jersey Supreme Court, for one, decided in 1981 that nine factors must be considered. They include the possibility and physical risks of pregnancy to an individual, the likelihood of sexual activities, the inability to understand reproduction, and the feasibility of using less drastic means of contraception.

Jon Rossman, executive director of the Advocacy Center for Persons with Disabilities in Tallahassee, thinks these strict standards could serve as a model when a sterilization case reaches Florida's appellate courts.

"In view of the Florida Constitution's privacy provision, which is stronger than that of the U.S. Constitution and most other states, it would be reasonable to suspect similar protections would be afforded an individual in Florida," he said.

"I have a big dilemma here'

The Association for Retarded Citizens says that 3 percent of the citizens in the United States, or about 8-million people, have some degree of mental retardation. The degree varies widely, of course, and can be influenced by an individual's social environment. Some children are born with severe physical and mental handicaps. Some are physically healthy but mentally retarded by childhood diseases.

Sharon Davis, the association's research director, advocates a policy that would prohibit involuntary sterilizations based solely on retardation, regardless of its severity.

In the past, many women were sterilized simply for the convenience of a state institution, and the preferred method "was the removal of the uterus," she said. "Then you didn't have to worry about menstruation."

Davis has a retarded daughter who just married a man with a learning disability. Her daughter has a dishwashing job, and is taking driving lessons, and for the first time in her life, has scored above the "mildly retarded" range on an IQ test.

For now, "I keep making sure she gets her refills on the pills," Davis said.

But she recognizes that her daughter may want children someday, and she would not deny her that right. It would mean "more work for me," she said. "I think the child would be part of an extended family."

Rose Flagg hopes her youngest daughter, Katy, never insists on her right to motherhood.

Nine-year-old Katy was born with Down's syndrome. She attends physical education and music classes with fourth-grade students in Tallahassee, but she can read only at a first-grade level and has a short attention span. She is a lovable girl, Flagg said, but her mental ability may never pass that of a 7-year-old.

"I'm a big believer in equal rights for people with disabilities, so I have a big dilemma here _ but I would strongly recommend to her that she not have children," Flagg said.

She hopes that when Katy is old enough to have children, she will decide she cannot and agree that a tubal ligation is the best way to avoid motherhood.

"I would not want a 6- or 7-year-old to care for a baby," Flagg said. "I know how difficult it is for me, a person of normal intelligence, to raise a child. I don't feel she could handle that responsibility. What if she got distracted, and completely forgot about the baby?"

She suspects parents of mentally retarded children worry about these issues privately, but don't discuss them much. Sterilizing your child is not an easy subject to talk about, she said.

The Association for Retarded Citizens adopted a position on the issue of involuntary sterilization at its annual conference this year. The association "believes that the presence of mental retardation, regardless of severity, must not in itself justify either involuntary sterilization or denial of sterilization to those who choose it for themselves," the position statement read.

The provision was adopted without debate.

David Olinger is a staff writer for the St. Petersburg Times.