When K.E.J. was 8 years old, she suffered a traumatic brain injury in a car accident.
When she was 26, her guardian attempted to obtain a court order to have the young woman sterilized. K.E.J., as she is known in court documents to protect her privacy, had no idea.
Before Tuesday, when Gov. Pat Quinn signed into law a measure that would require court orders approving the sterilization of people with disabilities, guardians could take steps to have their wards sterilized without the individual's consent.
Rep. Kathy Ryg (D-Vernon Hills), the original bill’s chief sponsor, says the law shows how society has evolved, citing the recent obituary of Eunice Kennedy Shriver, whose sister Rose was mentally disabled and had a lobotomy.
She says it also gives all parties protection under the law.
“I think it provides the due process that really protects all parties, most particularly the individual, but also the family, the guardian and the doctor,” Ryg says. “Once it was brought to people’s attention, it became clear there was a gap in the due process.”
“This is so important. All women need, deserve and should have all their options as to whether to become a parent or not to become a parent available to them,” says Shelley Davis, vice president of programs and advocacy for Chicago Foundation for Women.
Marsha Koelliker, public policy director for Equip for Equality, an organization that advocates for the rights of the mentally ill, says the law is a civil rights victory.
“It recognizes the fundamental right to privacy of people with disabilities, even under guardianship, and it also recognizes their dignity as a person,” she says. Koellicker says Equip for Equality has come across cases from the late 1980s and early 1990s where records show people were sterilized but never told the procedure would eliminate their ability to reproduce.
“In more recent years, we’ve had cases of young women with disabilities coming to us because their guardians were seeking to have them sterilized,” Koellicker says.
In the case of K.E.J., her guardian’s request was denied twice. K.E.J., did not find out about her guardian's attempt to have her sterilized until she consulted with Equip for Equality on another matter. Court records were then uncovered.
Before Quinn signed the bill, Illinois was one of 16 states that did not require a court order to perform such a procedure. Other states in the Midwest that do not require a court order include Missouri, Iowa and Nebraska.
Leah Bartelt, staff counsel for the American Civil Liberties Union of Illinois, says the law adds another layer of oversight for guardians, who are already scrutinized by the courts.
“Bringing the court in to assess whether … the ward would be able to make the decision on their own is an important step,” she says.
Under the law, courts would assign an agent to meet with the ward to discuss the petition for sterilization. After consulting with the ward, reviewing his or her mental capacity and ensuring he or she understands the petition, the court will make a decision.