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By Abigail Abrams
“This conservatorship is doing me way more harm than good,” she said, detailing how her legal guardians have dictated where she lives, works and receives therapy, stopped her from seeing friends, forced her to take medication against her will and prevented her from having her IUD removed so she could try to get pregnant. “I deserve to have the same rights as anybody does by having a child, a family, any of those things.”
But while Spears’ speech was shocking for many listeners, disability rights lawyers and advocates say what she described is not unusual for many conservatorships in the United States, which are typically instituted for elderly adults, people with mental illnesses or those with intellectual or developmental disabilities. Spears is arguably the nation’s most high-profile conservatee, and people with disabilities who have been fighting to reform conservatorships for years now hope that the attention paid to her case can give momentum to the push to rethink the entire system.
“I’m really heartened by the support that people have shown her and the outrage that people express when they see what conservatorship has done to her life,” says Sam Crane, legal director at the Autistic Self Advocacy Network. “What I really hope is that people can go beyond advocating for her and start really advocating for broader reforms that will help ensure that other people don’t have to go through this either.”
“It’s supposed to be a last resort”
If the system was born of good intentions, in practice, it can become warped and strip people of their basic civil rights.
A conservatorship, also known as a guardianship, is a legal tool that puts a court-appointed guardian or “conservator” in charge of making decisions for another adult who is deemed incapable of managing their own affairs. “The idea of conservatorships and guardianships is supposed to be a protective mechanism to protect a person who cannot take care of their own basic needs,” says Zoe Brennan-Krohn, a staff attorney with the ACLU’s Disability Rights Project. There is limited data on conservatorships, but a National Council on Disability report estimates that at least 1.3 million Americans are under guardianship. Once people are under a conservatorship, there can be periodic reviews, but the process varies by state and there is little oversight.
Conservatees don’t have to lose all of their freedom. In California, for example, where Spears’ case is located, the system is supposed to favor limited conservatorships and give the conservator only those powers that a judge determines are truly necessary. This could mean someone only gets help with making financial decisions or has a guardian attend medical appointments, while retaining the rest of their autonomy. However, the National Council on Disability has found that most guardianships for people with disabilities go way beyond that and give all of the conservatee’s rights to the appointed conservator.
And once a guardianship is in place, it is incredibly difficult to end it. It can only be lifted by a court. Conservatees often lose access to their money, to their ability to sign a contract and in some cases even to the Internet. Their conservator might be the one hiring a lawyer for them, they might not be able to afford a lawyer, or in cases like Spears, the court can appoint a lawyer they didn’t choose. “It’s supposed to be a last resort because it’s so invasive. It’s supposed to be only if there’s nothing else that works,” Brennan-Krohn says. “But in reality, it’s very often the first resort.”
This is in large part because of the way society views people with disabilities, advocates and lawyers say. “It’s a cultural failure,” says Jonathan Martinis, senior director for law and policy at Syracuse University’s Burton Blatt Institute and a leading expert on alternatives to conservatorship. He notes that the idea of guardianship for people with disabilities goes back as far as the first codified laws in ancient Rome, and it’s been a fixture of western legal systems since then.
Assumptions that people with disabilities can’t take care of themselves can also lead to situations like Spears being denied the choice to remove her IUD and have another child. “There have been efforts to control the reproduction of people with disabilities, and especially women of color with disabilities, for a long time,” says Crane. “And it really was born from the eugenics movement.”
In 1927, the Supreme Court ruled in Buck v. Bell that it was constitutional for the state of Virginia to forcibly sterilize a “feeble minded woman” for the “welfare of society,” and this kind of practice continued for decades. States have stopped allowing this kind of sterilization, and most have extra protections before someone under conservatorship can be sterilized, but Crane argues that Spears’ forced IUD constitutes reproductive coercion and should fall under that category as well.
Some guardianships are abusive, as Spears has alleged, but disability rights advocates say there are serious problems with the system even when everyone is acting in good faith. This is especially an issue for young adults. Among those with intellectual and developmental disabilities, people ages 18-22 are the age group most likely to be under guardianship. Educators routinely recommend guardianship for teenagers leaving school, creating a “school-to-guardianship pipeline,” according to a 2019 report from the National Council on Disability. For other young adults, making mistakes and learning from those choices is part of growing up. But for people with disabilities, those mistakes can be used against them in guardianship hearings.
“One of the things that we’ve seen with guardianships really commonly is that when you don’t have the ability to steer decisions around your life, you’re not in the driver’s seat, you disengage,” says Crane. “So people don’t develop skills under guardianship, they actually lose skills under guardianship. And it keeps people trapped in the cycle where people are making decisions for them without consulting them.”
A new model of support
Increasingly, advocates are promoting the model of “supported decision making” instead of conservatorship.
Supported decision making is a process by which an individual builds a network of people who they trust to help them make decisions, instead of having a court designate people for them to manage their affairs. This can be done informally, codified in a notarized agreement, or in some states recognized by a court. In 2013, Martinis represented Jenny Hatch, a Virginia woman with Down syndrome who was suing to end her guardianship, and the case became the first trial in which a judge denied permanent guardianship in favor of supported decision making.
Since then, 12 states and Washington, D.C. have recognized supported decision making as an alternative to guardianship, and there are movements in most states to bolster the model, says Martinis. Guardianship laws have come a long way in recent years, and legislators in California and other states have introduced bills to strengthen the rights of those under conservatorships.
But advocates says there is still more work to be done to educate teachers, doctors, judges, and families of people with disabilities about steps to take before or instead of guardianship. People who need support could also designate a power of attorney, for instance, which transfers more limited authority, or work with experts like a financial manager before moving straight to guardianship. With so many people now focused on Spears’ situation, advocates are hopeful that the star’s wrenching testimony can serve as a call to action for others.
“Every time we
shine a little bit of light, things get easier for everyone after that.
Britney’s not just shining a light, she’s a huge spotlight,” says
Martinis. “So maybe just maybe the conversation changes a little bit and
the culture changes a little bit. And we say before guardianship, what
else can we do?”
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