Adults with disabilities have historically been sterilized against their will in Illinois and in the rest of the country, Koelliker explains, because their guardians believed that children could inherit their disabilities or would not receive adequate care.
“This is the only group of people for whom this becomes an issue,” she says. “The reality is that there are a lot of people out there who are not labeled as people with disabilities who have difficulty raising children.”
In the past few years, attitudes in Illinois have changed. In a 2008 landmark decision, the Illinois Appellate Court supported a 29-year-old woman who refused sterilization as a means of birth control. After Equip for Equality, lead counsel in the case, discovered that Illinois was one of only 16 states failing to protect adults with disabilities from involuntary sterilization, civil rights advocates joined forces to push a permanent statewide policy change.
In mid-August Gov. Pat Quinn signed legislation that bans the sterilization of adults with disabilities without court approval. The new law, which goes into effect on Jan. 1, 2010, amends the Illinois Probate Act, the statute that defines the duties of guardians of adults with disabilities. It now requires a guardian to file a court motion for any proposed sterilization and for the court to appoint a guardian and obtain a medical and psychological evaluation of the ward before consenting to the procedure.
“This doesn’t prohibit sterilization — what it does is require an independent decision made by a judge as to whether this is an appropriate path to follow,” Koelliker says. “The decision isn’t made between the guardian and the doctor. It has some oversight.”
Since guardians were not previously required to ask permission before sterilizing their wards, Koelliker says, it’s difficult to pin a number on how many people with disabilities were affected.
Kirsten Johnson, the 29-year-old from Matteson, Ill., who won the support of the Illinois Appellate Court last year, found out about her pending tubal ligation after she contacted Equip for Equality for assistance. Johnson, who suffered severe head trauma in a car accident at age 8 and had been cared for by her aunt, decided that she did not want to be sterilized.
Equip for Equality secured a ruling for Johnson in the lower court, and after the decision was appealed, the Illinois Appellate Court ruled that all means of birth control, if involuntary, restrict the “fundamental personal rights of reproductive freedom and personal inviolability.”
“Furthermore,” the appellate court continued, “tubal ligation is a particularly drastic means of preventing a mentally incompetent ward from becoming pregnant, because it undercuts both of these rights so deeply.”
While the appellate court’s ruling helped lead to Illinois’ new legislative reform, Koelliker says more resources are needed to help people with disabilities raise their children.
“We need to realize that we’re all vulnerable to things in our lives that may require us to ask for assistance,” she says. “We need to make sure the things needed are available.”
Contact Amanda Robert at firstname.lastname@example.org.