Guardian sues to sterilize her niece

A mentally disabled 26-year-old wins stay on forced surgery
August 12, 2005|By Michael J. Higgins, Tribune staff reporter
In an unusual and emotionally charged legal case, a 26-year-old mentally disabled woman on Thursday staved off–at least for now–her guardian’s legal bid to force her to be sterilized against her will.
Kirsten Johnson of Matteson, who requires help with such basic tasks as preparing meals, said in a deposition that she would like to be a mother someday and didn’t want a tubal ligation, which she said, “Ties your ovaries so the eggs can’t get hatched.”

But Johnson’s aunt and legal guardian, Vera Howse, argues that her niece can’t handle the responsibilities of pregnancy or parenthood.
Johnson, whose brain was damaged in a childhood accident, has agreed to use birth control. But she isn’t capable of taking pills properly, Howse contends, and had a bad reaction to a long-term form of birth control, Depo-Provera injections.
Howse and Johnson, who is represented by an advocacy group for the disabled, presented witnesses and arguments over several days of hearings in June and July in Cook County Probate Court.
On Thursday, Probate Judge James Riley ruled that birth control was in Johnson’s best interest but said he would hold off making a decision on Howse’s “petition for tubal ligation.”
Riley ordered Johnson to be examined by a gynecologist to determine whether she can use other long-term birth control methods, such as an intrauterine device. The gynecologist is to report in January.
Johnson “is unable to do most of the home chores,” Riley wrote in a 12-page opinion. “She does not do any cooking. She cannot be left alone to operate a stove or microwave. She has a personal caregiver who comes into her home every day. … Simply put, if Kirsten cannot care for herself, how can she care for a child?”
The case shines a light on a largely hidden issue between adults with disabilities and their guardians. Many adults not legally competent to handle their own affairs are still sexually active. So their guardians may try to counsel them on birth control or suggest a sterilization procedure, experts said.
But seeking an involuntary sterilization in court is highly unusual, according to experts. Around the country, no one knows how often such cases arise, but it is rare to see it litigated in court.
No published legal opinions in Illinois directly address the issue.
Disability rights advocates generally oppose the idea, except where an incompetent person faces a serious health threat.
“Our position is that we’re dealing with a fundamental right,” said Byron Mason, attorney for Equip for Equality, the group that represented Johnson.
“Regardless of whether a person has a disability, a person has a right to make certain fundamental decisions about their own body.”

Howse’s attorney, Lester Barclay of Chicago, said Thursday that those discussions of principle ignore the practical consequences should Johnson become pregnant.
Johnson would probably have to go off her psychiatric medications during pregnancy and could become ill as a result, Barclay argued. He said child welfare officials might take the child from her, which would be tragic and painful for her.
“This lawsuit was not about placing any restrictions on Kirsten,” Barclay said. “It was only about looking at her desire to be free and recognizing her desire to engage in sexual conduct. … This is why we appoint guardians.”
Kirsten Johnson was born in 1978, and her early life was a poignant mix of misfortune and resilience. Her parents divorced when she was 4, and she grew up with her mother, Barbara Johnson. When she was 7, she was hit by a car and suffered brain injuries.
In 1990, Johnson’s family settled a personal injury lawsuit, which included a $750,000 lump sum and an annuity expected to pay Johnson $4.5 million to $14.4 million over her lifetime, court records show.
Just a few years later, Barbara Johnson was diagnosed with cancer. As she became more ill, the family moved in with Howse, a receptionist at a law firm, at her home in Matteson. Kirsten Johnson went to high school, attending a special-needs program.
Barbara Johnson died in 1995, and a judge appointed Howse as the young woman’s guardian. A separate guardian handles Johnson’s money, which can be spent only with court approval.
As an adult, Johnson attended workshops and other programs with men who have similar disabilities. She became sexually active, both sides agree.
Johnson began using Depo-Provera for birth control.
But in 2002, a doctor became concerned that she had gained 68 pounds and apparently suffered high blood pressure, hair loss and nosebleeds from the drug.
In 2003, Howse filed the petition in Probate Court. Equip for Equality found out about the situation when Johnson called the group with questions about whether they could help her get married to a man she was dating, Mason said.
Johnson told Equip for Equality officials she did not want the procedure done and repeated that claim in a deposition she gave in April.