DISNEY CHANNEL PRESENTS THE 2017 RADIO DISNEY MUSIC AWARDS – Entertainment’s brightest young stars turned out for the 2017 Radio Disney Music Awards (RDMA), music’s biggest event for families, at Microsoft Theater in Los Angeles on Saturday, April 29. “Disney Channel Presents the 2017 Radio Disney Music Awards” airs Sunday, April 30 (7:00 p.m. EDT). (Image Group LA/Disney Channel via Getty Images) BRITNEY SPEARS
There were a lot of messages to be gleaned from watching the recent documentary Framing Britney Spears, including a reminder that the intense scrutiny to which Spears had been subject when she was still a teenager was cruel and wrong, and that nobody should be treated that way. But, while not many people will ever experience fame at the level that Spears did, there is another way that the pop icon has had her agency taken away from her: the restrictive conservatorship she’s been under since February 2008.
A conservatorship — often called a guardianship — puts a court-mandated guardian in charge of making decisions for people who have been found to be incapable of acting in their own best interests. Depending on the type of guardianship, that might be limited to just certain kinds of decisions, such as financial matters, or it could extend to every aspect of someone’s life, including medical care.
It’s most well-known as a system that elderly people are placed under — especially those who have dementia — but actually, conservatorships can be used for anyone who has a disability and is seen as unable to take care of themselves.
Because this standard can be interpreted in a variety of ways, and because there’s poor oversight of guardianships in general, it’s a system that can take advantage of the very people it’s supposed to protect — and, ultimately, violate a person’s fundamental right to self-determination.
That’s why disability rights advocates have been fighting to reform guardianships for a long time. But it’s Spears’ case — which involves people combing her Instagram, vulturishly wondering if she’s mentally sound, that’s finally bringing this topic to the attention of the general public. If one of the most famous women in the world can have her rights stripped from her for over a decade, what hope do other people have to prevent this from happening to them?
“The implication which bothers us is that if she does have a disability, this is all okay,” says Sam Crane, legal director at the Autistic Self Advocacy Network (ASAN). “I absolutely support Britney Spears’ campaign to be freed from guardianship, and it does not matter to me whether she has a disability or not.”
“I’m really glad, actually, that this is becoming a more mainstream conversation,” she continues. “Because it’s been a concern in the disability community for a very long time, and it unfortunately hasn’t always gotten the attention it deserves.”
For people with disabilities, guardianships can either be an immutable reality or a threat they contend with their whole lives. It may be that someone’s particular guardianship is necessary, and what they want for themselves. But the system is not designed with sufficient guardrails to ensure that this is the case, nor is there thorough, consistent oversight. The stakes are too high for such haphazardness.
Guardianships don’t just control someone’s estate — they can deprive people of their right to vote and marry, and control who they see, even completely alienating them from the people they love. “I remember back before Obergefell, we would routinely see cases where — especially elderly people with dementia — because they weren’t married legally to their spouse, family members would place guardianships over them and move them to a nursing home and refuse to let them see their long-term partner,” says Crane.
At its root, the guardianship system is a function of a paternalistic society that believes it will always act in the best interest of other people — even if it means denying them autonomy. What’s in someone’s “best interest” is often based on an idea of what a moral, rational, contributing member of society looks like. The more you deviate from this ideal, the more controlling and violating paternalism can be.
Guardians, for example, can dictate what kind of medical care a person does or doesn’t get. They can force unnecessary, invasive medical procedures — like growth attenuation or sterilization — on people with disabilities, and they can also deny people life-saving medical care, even when that person has expressed a desire to receive it. Just a reminder: People without disabilities don’t have to explicitly announce that they would like to keep living — it’s just assumed. The same courtesy is not extended for those with disabilities.
“In Pennsylvania, there was a case where a woman seeking transition-related care missed her surgery date because her family members filed a guardianship petition to block the surgery,” says Crane. She was able to fight off her guardianship, “but it caused significant delays in her care.”
It’s estimated that about 1.3 million people in the U.S. are currently under a guardianship of some kind, but it’s hard to find precise, consistent data. Each state has its own guardianship laws, as well as its own record keeping — or lack thereof — and there’s no single place where every state’s data can be accessed. Even if you believe that guardianships are at times a needed option, even if as a last resort, you can’t ignore how the lack of oversight and transparency lead to abuse in the way that a damp, dark environment leads to mold and rot.
How a guardianship begins
“I would say there’s three sort of main buckets,” says Crane. “There’s people with developmental disabilities who usually are placed under guardianship as young adults — they might never have an experience of not being under a guardianship of some kind.” This is what’s called the “school-to-guardianship” pipeline; a report by the National Council on Disability (NCD) notes that schools are the number one referral source for guardianships when it comes to young adults with intellectual or developmental disabilities.
“When a person with a developmental disability is reaching the age of 18, schools and doctors and many other professionals in a person’s life might advise the parents to seek guardianship. The perception is that it’s the standard thing that you want to do,” Crane says. The assumption seems to be that this is in fact the way to prevent abuse — by taking away someone’s ability to make their own choices, lest they be misguided ones.
“People with mental health disabilities is another category,” Crane continues. “If a person has had multiple hospitalizations and the family members feel that they need to be involved with this person’s medical care, or they’re concerned about the decisions that a person is making, they’ll seek guardianship. And then the final category, I would say, is people who are aging and have developed dementia.”
In many states, once a concerned party files a petition to place someone under a guardianship, a court will make its determination on the basis of whether the person seems incapacitated. But what does that mean exactly?
“A lot of the time there’s real assumptions — that if you have this diagnosis or that diagnosis, then of course you’re incapacitated,” says Crane. “They won’t look much further than the diagnosis that a person has on paper.” Sometimes, the expert that the court relies on is clearly not the right kind of expert. An attorney who contributed the NCD’s 2018 report on guardianships recalls objecting when a court appointed an orthopedic surgeon to weigh in on a woman with an intellectual disability.
The report also makes the crucial point that concepts of capacity may be “as much philosophical as they are medical.” How much of what we consider “reasonable” and “sane” are normative statements asserting a certain worldview and behavior? Do people only have a right to self-determination if their actions make sense to a panel of experts? Can’t I behave unreasonably if I want to?
Once a guardianship petition is filed, the hearing can be distressingly quick. A 1994 study of guardianships by the Center for Social Gerontology found that most hearings it examined across 10 states lasted 15 minutes or less. In some states, like New York, a guardianship petition for someone with intellectual or developmental disabilities doesn’t always require a hearing. If there is one, sometimes it will take place without the person in question even being present.
“In a lot of situations, people don’t even have their own attorney,” says Crane. “They might have a court-appointed guardian ad litem — but the problem is that the guardian ad litem doesn’t have to represent your interests. They could agree that you should be under guardianship. And in that case, they’ll never present the case to the court for why you shouldn’t be.”
How guardianships end — or not
Initiating a guardianship might seem relatively straightforward; ending one is not. For people with intellectual or developmental disabilities who have been placed under guardianships, the vast majority are in it for the long-haul — no limits are placed on what aspects of someone’s life the guardian can control, and there’s no termination date.
“There are courts out there that have never [ended a guardianship],” says Crane. “Especially for people who can’t say that they’ve been cured. So if you have a developmental disability and you’ve gained skills and you’ve got supports in place, and you want to convince a court that you don’t need guardianship, but you still have your underlying disability? A lot of courts won’t even consider it. They’ll just say you still have a disability.”
There have been some high-profile success stories of people terminating their guardianships, but they still reveal how the guardianship system routinely enables the stripping of people’s rights. Take Jenny Hatch, a woman with Down syndrome. “When she was 28, she got into a bicycle accident and needed to go to the hospital. She had broken a few bones,” says Crane. “Her mother and stepfather took the opportunity to seek guardianship. She had never had a guardian before — she was 28 years old, living on her own, had a job at her local thrift store, was doing fine. Her mother and stepfather, who were estranged, sought guardianship and she was taken away from her job and placed in a group home that was far away from her church and her friends and her job.”
“They started cutting off her communication. They wouldn’t allow her to talk to anyone. It was hard even for her attorney to contact her. She was forced to work in a sheltered workshop for less than minimum wage, doing menial work. That was extremely boring to her,” Crane continues. “She’s a very social person who had really enjoyed working in the thrift store, because that gave her the opportunity to interact with people every day. I visited her in her thrift store and she was clearly in her element. When I talked to her about the experience in the sheltered workshop that she was forced to work in, she said it was so boring — she really was close to tears telling me about it.”
Hatch challenged her case in court and won, but it is extremely rare, on the whole, for courts to terminate guardianships for people with disabilities.
In theory, courts should be regularly monitoring all guardianships to assess its necessity and for signs of abuse. “But sometimes courts are part of the problem, right?” says Crane. “Because they’re often listening to these guardians and conservators over the person with a disability.”
“I hesitate to call it outright corruption, but a lot of what I would call professional conservators and guardians have long-standing relationships with courts,” she says. “That court has known the conservator for 20 years, 40 years, and if there’s a dispute between that conservator and the person with a disability, it’s just an uphill battle — because the court knows the conservator way better.”
Why disability rights advocates call for support, not guardians
There’s a universe of difference between helping someone live the life they want, and deciding the kind of life you think they should want. A kind guardian might deign to take into account the desires of the person they’re purporting to guard — but the danger is that they don’t have to.
For the tides to change from guardianships to alternatives that don’t take away people’s autonomy, Crane believes there needs to be “combination of cultural change and, to some extent, legal change.”
“[Courts] often won’t look into alternatives to guardianship,” she says. Instead, in many courts, the oppressive conditions of a full guardianship seems to be the first or only option considered. “In the developmental disability context, there’s a lot of people who absolutely need help making decisions. They might not be able to balance a checkbook on their own. They might have a hard time making a budget on their own. But they’re able to do that with help, right? They’ll have a person who’s helping them — let’s say they’re a sibling or parent or friend — who will sit with them and go through that process. This is what we call supported decision-making.”
“We’ve supported reforms that require courts to consider supported decision-making as an alternative, which means that a person chooses who supports them to make decisions and retains the ability to have the final say,” says Crane. A growing number of states have started enacting laws on supported decision-making, but they vary in how rigorously this alternative must be considered.
A large part of the “cultural change” Crane mentions is in how we frame stories of disability. Self-determination should not be conditional on public opinion or institutional authority. “We need to recognize that everyone needs support, especially for complicated decisions,” Crane says. If you don’t have a disability, asking for support doesn’t usually lead to the verdict that you’re incapable of self-determination wholesale — yet this is what the guardianship system essentially says about people with disabilities.
“We all rely on advisors and family members and friends to make decisions in our daily lives, and that’s something that people with disabilities have the right to do as well,” says Crane. It’s a right that should be championed even if you’re not a world-famous pop icon.
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