Guardianships like hers are all too acquainted to the disability group.

Sara Luterman has to confess that she was never really a fan of Britney Spears’ music. “I got caught up in this idea that Britney Spears is shallow, and as I’ve gotten older, I’ve realized how ridiculous that was and how misogynist it was,” Luterman says. Now, she’s kind of a Britney Spears expert. Luterman covers disability rights, and she’s watched over the past few years as Britney Spears’ fans have organized, advocated, pressured California’s courts to “free Britney” from a conservatorship that controls her finances and much of her life.

No one knew a whole lot about this legal arrangement until last week. That’s when Britney Spears herself testified in open court about it. The audio leaked almost immediately. Britney Spears spoke for more than 20 minutes, in what felt like a breathless run-on sentence. She said she had no control over her finances, couldn’t make her own reproductive choices, couldn’t choose her own mental health care, and she begged the judge for help.

But none of this surprised Luterman. “There are some people in the disability community who call conservatorship civil death,” she says. “You essentially legally stop being a person. All of the civil rights that you have are basically afforded to your guardian.”

On Tuesday’s episode of What Next, I spoke with Luterman about what Britney Spears’ case means not just for her, but for the hundreds of thousands of people just like her who don’t have a social media campaign focused on setting them free. Our conversation has been edited and condensed for clarity.

Mary Harris: This is all very personal for you. You’re autistic and partially blind. So things that may have stood out about Britney Spears’ testimony in court  to people without disabilities sort of made you shrug.

Like, at one point, Spears talked about being forced to go to therapy with providers she didn’t like or trust, sent to offices where she suspected paparazzi were lurking. I heard that, and I thought, Doesn’t that defeat the purpose of therapy? Mental health care is all about trust. But you say that’s a perfect example of how there are two systems of psychiatric care in America: one for quote-unquote “regular” folks and one for people with serious mental health issues. 

Sara Luterman: That also didn’t surprise me, the idea of being afraid of talking to your therapist about certain things, about being worried about being noncompliant. Those are very real fears that I’ve experienced and some of my friends have experienced. I haven’t been under guardianship, thank God, but when people think you’re crazy, nothing you say is believable. Everything can be undermined.

The main thing Britney Spears kept coming back to again and again in her testimony was the fact that she wants to end her conservatorship without being evaluated. Could you explain the significance of that?

It’s actually very difficult to end the conservatorship or guardianship under any circumstances. There’s a case of a young man named Ryan King. He’s not a young man anymore. It’s been years. So Ryan King finished high school and has an intellectual disability. And his parents were told, like a lot of parents are, “Look, he has an intellectual disability. You need to put him under guardianship.” So they did because that’s what they were told they had to do. And he was actually a very functional, independent adult, unexpectedly. He had a job at a supermarket for 10 years. He was paying his own rent. So his parents looked at the situation, and they talked to him about it, and they were like, “We don’t think we need this guardianship. You’re clearly fine.” So they go to the court and ask the court to remove the guardianship. And in this case, everybody agrees. The parents agree, who are the guardians. Ryan agrees. And the court said no.

Why?

Because once someone is determined to be under guardianship, it’s civil death. It’s very unusual for a guardianship to be removed or reversed. Because the idea is that it gets imposed when someone is fundamentally incapable and then being able to prove you’re capable when you’ve been determined to be fundamentally incapable is like a Catch-22. You don’t have the opportunity to really prove your competence.

So what Britney Spears is asking for here is doubly hard because she’s asking to leave the guardianship, which seems very difficult to do at all, and she’s also asking to leave the guardianship without some kind of stamp of approval that she’s OK.

It’s more that the evaluation is kind of pointless.

The evaluation would never find her to be fit?

Yes.

There’s no chance?

It would be unusual. I guess there’s a lot of unusual things about Britney Spears, because of who she is and how much money is involved. But I understand why she doesn’t want the evaluation, and I don’t think that the evaluation should be necessary. I’m also skeptical that the evaluation would treat her fairly, based on every other guardianship case that I’ve ever seen.

What happened with that case you were talking about with the man whose family wanted him to be free of guardianship. Did he ever get out from under it?

Yeah, it took them 10 years and lawyers

In writing about Britney Spears and her testimony, a lot of people talk about how outstanding her case is. And a lot of writers talk about how usually these arrangements are made for people who are old and infirm. I wonder if you take issue with that a little bit.

I do think that when people write about the arrangements that way they’re missing the point. It’s complicated, like everything else is. There are legitimately some people who struggle to make decisions about things that they need to live. For example, right now, Nichelle Nichols, the actress who played Uhura on the original Star Trek, her family, recently put her under a conservatorship. But the reason for that was because there was a so-called friend who was financially exploiting her. So they did that because they wanted to protect her. And that’s a very laudable goal. It is completely reasonable for families to want to protect people they care about. The problem is that the guardianship system itself is just so unregulated. We don’t actually even know how many people are under guardianship in the United States.

I read it was over a million, which was more than I was expecting.

That’s just an estimate from the AARP. We don’t actually know because there’s no federal reporting standards and the state records are really shoddy. There’s no rules about how things are recorded or about whether records are even saved. So we don’t know how many people are under guardianship in the United States. We don’t really know how many guardianship end. We have anecdotal evidence and stories, but we don’t have statistics. Those numbers just don’t exist because we haven’t been keeping track.

The other challenging thing about talking about guardianship to me seems to be that each arrangement is a little bit unique, has its own reasons for existing, has its own person in charge. With Britney Spears, it’s her family who’s in charge, especially her dad. But then there are cases where the state gets involved and the state takes over even when the family doesn’t want them to. There was this case in Maine, a guy named William Dean, who is a savant and had a mental health crisis after his mother passed away. His family actually wanted to be conservators for him, but the state stepped in and the results seem to be disastrous.

Oh, man, that case haunts me. It’s a very extreme case, but everything that happened was completely legal. He was a savant who really loved musical instruments. He had a collection of historical organs, and the state sold all of them. And they sold the properties that his mother had owned for considerably less than market value.

And he had waterfront property.

And also they euthanized his cat.

And did the state ever explain why?

They still assert that what they did was right and necessary. William Dean and his family actually brought a suit to try to get the state to give something back to them after having essentially destroyed his life, and it was determined that everything that happened was legal. And Dean died before any kind of justice could have even been meted out.

You make this point that I think is really important in your writing when you talk about these cases of guardianship and conservatorship. You talk about how nondisabled adults make harmful decisions all the time, and they usually don’t risk losing their civil rights for it. But a disabled adult is in a different situation, where if they make a bad decision, someone—a family member, the state—can step in and all of the sudden lay claim to so many aspects of their life. And I thought that was a really useful framing because you think about conservatorship, and a lot of people think about it as a form of protection, but by framing it in a different way from the disabled persons perspective, you really see how harmful it can be.

It’s hard to know because once again, there is no data, but I do think that most family conservators and guardians are probably very well-intentioned and care about their relatives. I don’t contest that at all. The problem is that if you have a system that relies on the unchecked, unsupervised benevolence of someone who more or less has absolute power over another person, that’s dangerous. The state was able to do all of those things to William Dean because it was legal. In disability service provision, there’s this concept of the right to eat too many doughnuts and then take a nap.

I’m in favor of that, right?

That’s the thing: If a nondisabled person decides I’m going to skip work and have a couple of drinks and eat a whole bunch of doughnuts and then take a nap, that person isn’t going to have any of their fundamental rights taken away. That’s a thing that normal people are allowed to do. But if you have a disability and you do those things, that’s seen as further evidence of your incapacity and inability to responsibly manage your own life.

Do you think conservatorships are ever necessary?

I do think that we’re always going to need some kind of proxy decision-making. There are genuinely some people who can’t communicate what their preferences are in ways that would be meaningful to most other people. For example, I have a friend whose son is under guardianship because they don’t really have other options. He’s nonspeaking, and he has an intellectual disability. He has preferences, like he likes his food or maybe he wants to go swimming one day and not another day, but it wouldn’t be possible to consulting him about his tax situation or that kind of thing. This is actually something I’ve been struggling to write about. When people have those kinds of disabilities, the state creates a situation where their parents don’t have another choice.

Why? 

Because the less restrictive option in that case would be power of attorney, which gets used with older folks, where an elderly person can designate someone else as the person who makes their legal decisions, but they still retain all of their civil rights. And you can’t do that with someone with a significant disability like that, because they are seen as fundamentally incompetent and incapable of giving consent.

So they couldn’t even agree to enter into the relationship in the first place.

According to the state, yeah. Some families are just forced to go for the more restrictive environment because otherwise they’re just hoping that the state won’t step in.

A lot of disability rights advocates cite this case, Buck v. Bell, that went to the Supreme Court. Do you think it’s worth talking about that case and how it frames this bigger issue you’re talking about, about not just conservatorships but how the legal community has seen people who are disabled?

Yeah, so Buck v. Bell was a case that happened in the early 20th century. It’s the eugenics case; it’s the basis for whether the government can legally forcibly sterilize people in this country. There was this woman named Carrie Buck and her mother had been institutionalized. She had a child out of wedlock, and this was seen as her being fundamentally unfit, and so she was institutionalized, and then the institution wanted to sterilize her because they felt that she was dysgenic and wouldn’t produce offspring that would degrade the human race, specifically the white race, if we’re going to be honest about the ideological underpinnings of this.

She was white.

Yes. Eugenics at the time was very popular. And there’s this quote from Oliver Wendell Holmes, who wrote the majority decision: “Three generations of idiots is enough.”

And Buck v. Bell was never overturned?

No, it was never overturned.

I wonder if there’s an alternative framework for disabled Americans, people who might need some assistance but don’t want to surrender their civil rights. What does that look like?

Yeah, there’s this newer legal construct called supportive decision-making that’s increasingly popular in the intellectual and developmental disability community. Seniors are using it now too. Basically, instead of losing all of their civil rights, a person retains their civil rights and then has advisers—either informal or formal, depending on the state and how the pilot program is structured—and those people help someone make the big decisions. Like, if someone wants to move to a new apartment, they’ll talk about how much it costs and help walk the person through all of the things that they should understand about it. And the person can defer to their supporters if they need help.

Are their supporters trained or anything? Or is it just friends or family?

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It can be both. Some states have more formal supporters, like money managers or people that are through nonprofits. And in some cases, they have looked to family members, siblings, parents, friends even.

What I keep coming back to with Britney Spears is that it’s clear that she has very few people around her that she trusts. She talks in her testimony about her whole family essentially being people that she even potentially wants to sue. I just look at that and I think I don’t know a good way out of this situation for her. She’s been surrounded by people she doesn’t trust for so long. She’s asking for that entire system to fall away. And then the question becomes what comes in its place? Do you think about that?

I just feel like maybe she doesn’t need a system. Why do we get to decide what’s good for Britney Spears? Why does Britney Spears’ family get to decide what’s good for Britney Spears? If she does stop having this framework and she has another mental health crisis—why is she not allowed to do that? Why is she not allowed to struggle, to have difficulties, to make bad decisions? Those are all things normal people do all the time.

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