I'm Begging You Not to Make Up Your Mind About Complex Medical & Legal Decisions Based on Celebrity Media

what do you suppose the average level of knowledge of California conservatorship law is here

In the 1970s, the Canadian psychiatrist Darold Treffert first referred to his concept of “dying with one’s rights on.” The phrase elegantly captures a common tendency in disability rights discourse, which is to privilege abstract concepts like autonomy over the actual physical reality of personal health and safety. In a piece for City Journal, I discussed this attitude through the lens of Rebecca Smith, a schizophrenic homeless woman in Manhattan who froze to death on the street in the 1980s because the barriers to involuntary commitment had prevented city social workers from saving her. Rebecca Smith died with her rights on; liberal do-gooding had created a scenario where the pleasant fantasy of her personal freedom was placed before her literal, material life. Of course, there is no such thing as freedom when one’s mind is hijacked by a psychotic disorder. But years of hippie attitudes about mental illness as a kind of beautiful rebellion had poisoned the well and bent policy in a direction that held physical safety in little regard. As Treffert wrote, in the post-1960s world, America had shifted from “an attitude of stifling paternalism toward the mentally ill to the outright abandonment of their needs.”

I’ve thought of Smith when reading about the controversy bubbling up over the guardianship of Wendy Williams, a former talk show host who has been diagnosed with dementia and was placed in guardianship by a judge in 2022 following various indicators of instability, including outflows of money to people in her circle that had been flagged as unusual by her bank. Williams has on several occasions indicated that she wants to be freed from the guardianship and that she’s being exploited, including by passing disturbing notes; her court-appointed guardian has reiterated that Williams has been appropriately diagnosed with frontotemporal dementia and aphasia, that there were concerns about financial exploitation, and that the ongoing guardianship is appropriate. The internet has picked a side, and I bet you can guess which one!

On Twitter, on Reddit, on TikTok, in comments sections - everybody is sure that they know exactly what’s happening, especially that Wendy Williams is a perfectly competent and capable autonomous person, with no concern for her ability to make sound and responsible decisions, and the guardianship is a form of kidnapping or slavery or just generally exploitative. The fact that the initial concern was inspired in part by a bank noticing concerning patterns of financial transactions - which, to be clear, has often been a legitimate first sign of exploitation of patients with cognitive and neurological disorders - has inspired all sorts of conspiracy theorizing. And all of this has drafted off of the years-long saga of the conservatorship of Britney Spears. (“Conservatorship” is just a California-specific term for guardianship, more or less.) Spears spent years without control of her own finances, largely because of a lifelong exploitative pattern of behavior from her father. And Spears’s conservatorship appears to have been genuinely abusive. But of course, that’s an n of 1, an extraordinary case that could not possibly be more different from the conditions faced by the average candidate for guardianship. It would be remarkably irresponsible, as well as stupid, to advocate for ending guardianship altogether over the Spears case or the Williams case, should it prove to be genuinely unjust.

And yet that’s exactly what a lot of people started doing. A general anti-guardianship movement has started building thanks to the (again, entirely sui generis) Britney Spears situation. You can find this stuff on Reddit and on Twitter and on TikTok and all of the other places where bad ideas flourish online. And there’s of course a preexisting anti-guardianship community waiting to be embraced; it’s an almost perfect Venn-diagram overlap with the autism-disability rights crowd, the ones who say that autism is a disability but not a disorder (incoherent), that attempting to treat autism is genocide (absurd), that autism is an identity (wrong). They’re the same people who push the comprehensively-discredited technique of “facilitated communication.” What this new anti-guardianship crowd shares with the disability activists, in particular, is their absolute inability to contemplate that some people are actually really sick in a way that is genuinely destructive and legitimately unfixable. The activists who say that schizophrenia is just an “equally valid way of knowing” are unable or unwilling to confront a world where some schizophrenics are moved by the voices to shoot up movie theaters; the social media anti-guardianship types are unable or unwilling to accept that disorders like autism or Alzheimer’s or frontotemporal dementia really do rob people of their most basic ability to understand, to communicate, and to make good choices. Like so much social justicey activity, these tendencies are predicated on a refusal to accept that the world is an permanently imperfect place.

Jill Escher, of the National Council on Severe Autism, spelled out the idiocy of investing too much meaning into the Spears case back at the height of Free Britney mania. In doing so, she describes establishing a guardianship for her own severely-autistic son, who is totally incapable of securing his own well-being - and whose personal situation is vastly more indicative of the average guardianship than that of Spears. “In nearly all cases, the conservatee is indigent, and there is no potential financial gain to the family,” writes Escher. “To the contrary, the conservatorship imposes on the conservators many affirmative duties, responsibilities, and burdens, with no potential tangible gain apart from the knowledge that they can use their legal authority to advance the well-being of their loved one.”

An informative and evenhanded (though opinionated) overview of guardianship can be found in Amy Lutz’s excellent 2023 book Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most. Lutz presents a history-rich overview of debates over guardianship, including the United Nations Committee on the Rights of Disabled Persons, which in 2014 called for abolishing all “substitute decision-making regimes such as guardianship, conservatorship and mental health laws” - a scenario that would leave millions of immensely vulnerable people without any legal protections against all manner of personal, legal, economic, and sexual exploitation. Owing in part to this very extremity, the CRDP guidelines have gone unadopted almost everywhere. But the fact that the United Nations could empower a body that came to that extreme outcome shows how deeply ingrained anti-guardianship thinking is in elite circles, and this spirit lives on in the disability activist community’s calls for “supported decision-making,” or SPD, an alternative to guardianship that likewise confers no legal muscle to prevent the severely cognitively impaired from entering into contracts, spending profligately, moving in with someone, engaging in sexual or romantic relationships with someone, or otherwise taking part in behaviors that involve risk and the need for uncompromised thinking. Lutz acknowledges that guardianships can be exploitative, and so do I. But the alternatives are all worse.

Lutz uses an illustrative example to demonstrate just how important guardianship can be, and how easy it is to exploit those without a guardian.

Rebecca J., one of my interlocutors, was stunned to discover that her nineteen-year-old autistic son, Tyler, had left the house with no money and no clothes to spend the weekend with a 40-year-old man from Wyoming who had flown 3,000 miles, rented a car, picked him up, and took him to a hotel. Rebecca called the police and they did bring him home, but because she doesn’t have guardianship, the officers said “that he could make his own decisions—even if they were bad ones.” They told her not to call them if he disappears again.

Don’t you just love freedom and autonomy?

This is a fairly common occurrence, where the parents of a cognitively impaired child don’t think to set up a guardianship after that child turns 18. Although state laws vary, in general an adult without a formal guardianship can legally consent to anything a non-impaired person could. As can be seen in this case, sexual exploitation is one core danger; while charges can sometimes be brought against someone who sexually exploits a person with cognitive disabilities, those charges are difficult to prove and depend a great deal on situation and statute. In contrast, in many or most cases a person in guardianship is presumed to be unable to consent to sexual activity, and a guardian has a legal right to demand that the police return their ward to their custody. There are many documented cases of families facing great difficulty in regaining custody of a loved one with a cognitive or developmental disability when there is no established guardianship. Opponents of guardianship, meanwhile, have no answers to these problems. SPD does not provide the necessary legal force; indeed, SPD intentionally ensures that family members and other custodians don’t have the legal authority to decide where wards go, what they do, or who they associate with.

Again, I beg you not to overrate these rare scenarios involving rich celebrities. Do you really want the parents of a 20 year old girl with Down syndrome to have no recourse if she becomes the victim of sexual predation by an adult man who has no disability? Do you really want your 80 year old father to be able to sign up for a scammy reverse mortgage that slowly steals his home away from him, with you powerless to prevent it? In both of these situations, depending on the state and scenario, there are potential legal avenues to address the problem. But without a guardianship, actually achieving a legal victory is difficult, potentially expensive, and fundamentally unsure. I really have to stress that it’s often far harder to challenge financial exploitation of someone with limited cognitive facilities than you might think. Yes, contracts can be annulled thanks to diminished capacity. But that process can be complicated and typically involves paying legal fees out of pocket upfront. Guardianship is far from a balm for all of these problems, but loved ones with guardianship rights are in a far stronger position to prevent fraud and abuse. Sadly, obtaining a guardianship can cost thousands of dollars in legal fees for families, and in some states cannot be applied for prior to the ward reaching 18, which means there will inevitably be a gap when the family has no binding legal authority over the ward’s well-being.

I think this whole thing points to two aggravating internet tendencies. The first is the way online connectivity tempts people to become armchair experts; there’s this repetitive dynamic where people watch a TikTok, learn about some political subject for the first time in their lives, and then after that first five minute education, turn the camera on themselves and lecture the world about a subject they only just discovered. The other dynamic the Free Britney moment and broader anti-guardianship movement reveal is the degree to which people increasingly want to take the online offline, to take their social media obsessions and bring them into corporeal reality. You might compare it to the rise of disturbing trends regarding true crime, where fans increasingly attempt to solve crimes themselves and often engage in ugly behaviors while doing so, such as harassing the sister of a murder victim because she publicly doubted their theories. Well, if you do want to get involved, here’s a great way to start: ask our media to stop presenting such comically one-sided versions of these stories. (NPR, of course, is a leader in this area.) Celebrity cases are profoundly influenced by disparities in preexisting attention and sympathy. Those who write about these situations should approach them as the achingly complex and profoundly sensitive topics they are.

Lutz has a request for those who wax self-righteous about the rights of the severely disabled without understanding their challenges. She writes

What if, before defunding or eliminating any educational, vocational, and residential settings, policymakers were forced to spend even a short amount of time with those who rely on such models and their families—to sit with my twenty-four-year-old son Jonah, for example, while he sucks his thumb and watches the same thirty-second clip of Elmo’s World over and over, to observe the swelling of cauliflower ear where he hits himself in the head, to listen to me enumerate our greatest and most hard-fought victories: toileting, shoes, haircuts, plugging in his iPad when it dies instead of throwing it out the window of a moving vehicle? Could they really walk away from that experience completely unaffected?