Last month, pop star Britney Spears went to court to protest the guardianship she’d been under since 2008. She told a judge in Los Angeles that she had been drugged, forced to work against her will, and even denied the right to remove her IUD in order to have more children.
“I am traumatized,” she said. “I just want my life back.”
The hashtag #FreeBritney quickly dominated social media. Among its enthusiastic users were many disability activists. They had been fighting guardianship rules for decades.
Guardianship and Disability rights
You may not think of it as a disability issue. After all, guardianship (also known as conservatorship) is defined as a legal relationship between a responsible, competent person and someone who lacks the intellectual or emotional capacity to care for themselves. Typically, the one under guardianship is a child.
But Haley Moss, an attorney who identifies as #ActuallyAutistic, argued recently in Teen Vogue that guardianship is, by definition, all about disability rights (or the lack thereof).
“Britney was essentially deemed disabled,” she wrote, noting that Britney’s specific diagnosis if there is one, isn’t public knowledge. According to the ACLU, people only end up under conservatorships if they are assessed as having some type of disability, making Britney’s case a disability rights issue.”
The National Council on Disability (NCD) estimates that some 1.3 million Americans live under guardianships. They come in all ages, but many are folks with intellectual or psychiatric disabilities. The fact that NCD keeps count at all is testament to the uneasy connection between guardianship and disability rights.
In theory, some guardianships may be appropriate. Children need guardians, after all. But the consequences of abuse can be dire.
Disabled people under guardianship—children and adults alike—have been forcibly institutionalized against their will. They have been forcibly sterilized. Sometimes both. Back in 1927, in a notorious case called Buck v. Bell, the U.S. Supreme Court ruled on a case involving a teenager named Carrie Buck, who was intellectually disabled. She was essentially in foster care at the Virginia State Colony for Epileptics and Feebleminded, where she had been raped and become pregnant. The state sought to forcibly sterilize her, and it won. The court ruled that compulsory sterilization of those deemed unfit, particularly people with intellectual disabilities, was not only constitutional but beneficial to society. It did not violate due process protections, said Justice Oliver Wendell Holmes Jr., because it was essential for the safety and, in particular, the health of the community.
The state of Virginia’s sterilization statute was not repealed until 1974; the Supreme Court decision has never been expressly overturned.
More recently, the controversial life-and-death case surrounding Terri Schiavo was similarly decided on guardianship grounds. Schiavo lived in what doctors called a “persistent vegetative state” for 15 years, following a collapse in her Florida home at age 26, possibly due to a freak heart attack. She was nourished through a feeding tube and nonverbal—like many disabled people—but her parents found her responsive; she moved her eyes and smiled occasionally, they insisted. Her husband and legal guardian, however—who had in the meantime found a new fiancée he wanted to marry—went to court to assert his right to have her feeding tube removed. Since he, not the parents, was her guardian, her plug was pulled in March 2005, and she died shortly after, at age 39.
Legal Protections Under Review
To date, only 14 states require guardians to have some sort of training or credential. Guardians are usually family members appointed by a judge, not by the individual under guardianship. The process itself is potentially abusive. It’s a stranger picking another stranger to have complete control over someone who’s powerless to object.
But there is hope. In mid-July, Britney Spears won the right to replace her attorney, something she had been prevented from doing for 13 years.
More broadly, her case shined such a bright light on the problem that the move to enact federal legislation to change the system has received bipartisan support. No less than senators Elizabeth Warren, Democrat of Massachusetts, and Ted Cruz, Republican of Texas, have spoken out on the issue.
Then, in late July, Democratic Representative Charlie Crist of Florida and Republican Representative Nancy Mace of South Carolina introduced the Freedom and Right to Emancipate from Exploitation (FREE) Act to give those under guardianship a little more power and greater transparency.
If passed, it would allow those under guardianship the right to petition to have their guardians replaced and, at the same time, to find an independent caseworker to watch for abuse. States would also be required to provide annual reports about their local guardianship arrangements.
The power to decide what and whom is appropriate still rests with a judge, not those directly affected, but it’s a first step.
Ben Mattlin is a Los Angeles-based freelance writer, author and frequent blogger for FacingDisability.com. He was born with spinal muscular atrophy, a congenital muscle weakness that causes paralysis and related health issues.
Ben is the author of MIRACLE BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity, and IN SICKNESS AND IN HEALTH: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance . He is a frequent contributor to the Washington Post, New York Times and Financial Advisor magazine. His work has also appeared in the Los Angeles Times, Chicago Tribune, and USA Today, and has been broadcast on NPR’s Morning Edition.