Advocates seek to strengthen laws regarding sterilization of disabled people

Disability advocates are calling on Nevada legislators to create additional protections for intellectually disabled people whose legal guardians wish to have them sterilized.

A legislative committee focused in part on adults with special needs unanimously voted to look into revising the statute governing the sterilization of people who are under legal guardianship. The July 19 vote came after the Nevada Disability Advocacy and Law Center and an independent disability advocate raised concerns that the current law may be allowing guardians to use outdated beliefs on physical and intellectual disabilities as a basis for permanently removing someone’s ability to have children, which is considered a constitutionally protected right. The existing statute dates back to 1933.

“I wish I could report this wasn’t still happening but it is,” disability advocate Erik Jimenez told the legislative committee.

Jimenez says he did not realize the sterilization of disabled people under guardianship was still an issue until a lawyer told him about an ongoing case in Washoe County. Jimenez says that after doing additional research he found a Clark County case from approximately a decade ago involving an autistic man who was sterilized against his wishes because his legal guardian believed the disorder could be spread genetically and wanted to stop that from happening.

“That’s a good backdrop for what we’re talking about here,” says Jimenez.

The United States has a long history of eugenics and forced sterilization of people who are now protected by discrimination laws, including racial or ethnic minorities, as well as physically and mentally disabled people.

The guardianship element differentiates it somewhat from broader injustices of the past, but the topic still evokes serious bioethical debates and controversy.

Washoe County Legal Services Executive Director James Conway explains that people are typically under guardianship because they lack the capacity to manage their own affairs, therefore it’s natural many guardians see reproduction as incompatible with that. The prevailing thought is often: If they can’t care for themselves, how could they care for someone else?

Conway adds: “When (this issue) does come up, we have to ask why we resort to that measure. Obviously there are other birth control measures available. Why do you do the nuclear option? Why is that necessary?”

Many, including the American Civil Liberties Union, question whether legal guardians are the ones who should be making that decision and answering those questions. The United Nations Convention on the Rights of Persons with Disabilities argues in a report that many of the given motivations for performing sterilization on adults and minors are not justified. One reason often cited is protection from unwanted pregnancy caused by sexual assault, which disabled people are especially vulnerable to.

Both of these groups advocate for so-called “supported decision-making” that takes into account the wishes of the disabled person, as well as legal safeguards for individuals whose desires might not be known because of an extreme disability.

Here in Nevada, guardians must receive a court order in order to get a protected person sterilized. Judges are permitted to authorize the procedure if it “is of direct benefit to, and intended to preserve the life of or prevent serious impairment to the mental or physical health” or “is intended to assist the protected person to develop or regain the abilities of the protected person.”

Disability advocates say that leaves too much open for interpretation.

In a presentation to the legislative committee, Janet Belcove-Shalin of Nevada Disability Advocacy and Law Center recommended additional criteria the state could include to ensure due process. They include requiring a guardian ad litem and/or counsel to represent the protected person, setting a legal burden of “clear and convincing evidence” whenever the protected person’s preference is unknown, and requiring that “less irrevocable and intrusive means of contraception” be proven non-viable as options.

Washoe County Legal Services confirmed it is currently representing a protected person in a guardianship case involving sterilization. Conway, who is not directly representing the client, said the nonprofit could not provide details on that ongoing case because of attorney-client confidentiality. He did note that such cases are not commonplace. He believes this case is the first of its type being handled by the Reno-based nonprofit.

Jim Berchtold, who heads the Guardianship Advocacy Project at Legal Aid Center of Southern Nevada, says none of its attorneys have seen the issue of sterilization against a protected person’s wishes make it to the courtroom in Clark County.

“It wouldn’t surprise me if we face the issue at some point,” said Berchtold via email, “but so far we (and our clients) have been lucky.”

When interviewed by the Current, Conway hadn’t read about specific changes that might be considered by the Legislature, but he said Washoe County Legal Services is generally in favor of creating additional safeguards and protections for vulnerable people.

“This issues illustrate the need for attorney representation for all protected people,” he said.

Jimenez agrees. He worries the practice may be flying under the radar here in Nevada.

“The bigger problem is we don’t have any available data,” he says. “We really don’t. That’s even more frightening.”