Doctors gave her medicine to calm her down. She chose to live with the voices in her head.
A new movement wants to get people to think less about drugs and more about acceptance.
When Caroline Mazel-Carlton was in day care, she started hearing voices. By the time she was in middle school, she had a bowl of oatmeal and a white saucer of colorful pills every morning for breakfast. Her voices remained vibrant. They weren’t inside her head; they spoke and screamed from outside her skull. She couldn’t see the people who owned them.
The voice that had been with her the longest told her that bad things were going to happen to her family in Zionsville, a town north of Indianapolis. These bad things had something to do with the TV images of the Gulf War: fighter planes, flashes in the sky, and huge explosions on the ground. Even though she knew the answers to the teacher’s questions, a woman’s voice told her at school that her clothes smelled and that she should keep her hand down. Another voice followed her every move, and it sounded like it was making fun of her. “She is now getting out of bed. Oh, she is now walking down the hall.”
Her mix of psychotropic pills changed and grew to include antipsychotics, mood stabilizers, an antidepressant, a benzodiazepine for anxiety, and a stimulant for attention deficit disorder. It’s common for people who hear voices or have other hallucinations to end up on more than one drug. In an effort to calm the mind, doctors often prescribe more than one type of antipsychotic at the same time.
At most, Mazel-antipsychotics Carlton’s were able to make her voices sound like a wall of noise. This might be more annoying than hearing them one at a time. The antipsychotics made her gain 50 pounds and make her feel like she was losing control of her neck and forearms. Her hands shook and looked like they wanted to flap-paddle through the air. In addition to making her feel alone because of how different her mind was, the side effects of the drugs made her feel even more alone. Her anger and disgust with herself, as well as her fear that she was barely human, made her twist and pull at her hair. Patches of bald head started to show. Her classmates called her names like “fat-ass” and “crackhead” and asked her why she was shaking and going bald.
In high school, she tried to escape by taking weed, Valium, and heroin in addition to her prescriptions. Even though she didn’t do well in school, she got a perfect score on the verbal part of the SATs. She had found some relief in literature for years, like in “Hamlet” and “Ethan Frome,” where she read to herself over and over the “delirious descent” of Ethan’s suicide attempt. She also told her two younger sisters stories. They loved how she changed her voice when talking and when switching from one character to another. This skill came from listening to other people talk. It wasn’t that she gave the characters in her books those voices; it was more that she had a good understanding of the subtleties of speech because she heard it so much and so often. And when she read out loud, either to her sisters or to herself, it helped her calm down the people who were neither in the books nor in the real world that she, her family, and other people lived in.
She got into Indiana University Bloomington with a perfect score. She signed up for a neuroscience seminar, thinking, “I’ll find out why I’m crazy.” Even though she couldn’t get answers, she loved the class. But she also gave sex in exchange for drugs. It wasn’t as clear as prostitution, but it wasn’t any softer, either. There were men in states of addiction and rage, and she absorbed their anger and violence. One man beat her up in the shower, and she woke up with a costume of bruises.
After she had an abortion, she heard a voice say that he would cut off her fingers “one by one by one.” She was taken in by police more than once. She fought with police, went crazy, and hit her head against the wall of a cell where she was kept alone. On her third time being caught, she stole electronics to sell for drugs. Her parents, who are both lawyers, may have been the only ones who could have saved her from jail time. She was sent to a high-end locked ward on the outskirts of Houston and then to a psychiatric farm in the foothills of the Appalachian Mountains. There, after working hard and earning the right to not take her pills under the watchful eye of a nurse, she decided to stop taking all of them. The choice was made on the spot, but it wasn’t crazy. She felt better when she went to the farm and cleaned out the sheep stalls and helped a runt donkey’s sore feet. And she could no longer deal with how useless and dangerous the drugs were. She didn’t make any cuts. She threw the pills down the toilet every morning and every night, making sure that if anyone checked her medicine case, they would see the right number of pills left.
She lost weight. She got her hair back. Her voices seemed to be going away, but not giving up. She moved to a group home in Asheville, North Carolina, where a staff member took her and the other residents to a flat-track roller-derby match. Mazel-Carlton thought that a crowd of men watching skaters in skimpy outfits would turn her off, but instead she watched with rapt attention as women of all shapes and sizes competed in a violent sport that looked like rugby without a ball. The next day, she bought skates. She practiced on her own and then talked her way into practicing with the local team. Soon, she was featured on billboards all over the city as a small girl with dark eyes who was one of the team’s best scorers. She felt like she was starting to control her chaos and turn it into determination, and she gave roller derby credit for that. In roller derby, chaos has to be gathered and used.
In the late 2000s, when Mazel-Carlton was in her mid-20s, a new job in mental health came up: peer-support specialist. This is a job for someone with “lived experience” who works with mental health professionals. The idea is that people who are having trouble can trust their peers more. Mazel-Carlton worked in a number of low-paying jobs that took her to Holyoke, Massachusetts, in 2012. Holyoke used to have more than 25 paper mills, but it is now one of the poorest places in the state. There, she went to work for the Wildflower Alliance, which is now a peer-run organization with a three-room office above a deserted downtown street and a goal of changing how our society understands and treats extreme mental distress.
She started leading support groups for people who hear voices or see things that aren’t there. These groups are similar to Alcoholics Anonymous meetings. The groups met on second-hand chairs and sofas in small rooms rented by the alliance. There were no clinicians in the room. What psychiatry calls psychosis, the Hearing Voices Movement calls “nonconsensus realities.” One of the most important beliefs of the movement is that talking about ghosts in a room won’t make them more real or give them more power. Instead, the talk will break the hold of hallucinations and, most importantly, the feeling of being alone. It will do this in part by easing the pressure of secrecy and reducing the feeling of being different.
Mazel-Carlton also sometimes worked as a staff member at Afiya House, a temporary home run by the alliance as an alternative to locked wards. People who live at Afiya are in desperate need. Many of them are not only mentally messed up but also don’t have a place to live. Many are suicidal. There are no doctors or security guards on staff. Instead, there are only people who have seen how desperate people can be. A homemade sign in the living room says, “Holding multiple truths. Knowing that everyone has a true picture of how things are.”
A decade after she moved to Holyoke, Mazel-Carlton and the Wildflower Alliance are now the leaders of a growing movement in the field of mental health to completely change how severe mental illnesses are treated. The medical establishment doesn’t care much about what they think. The traditional way focuses on risk management, especially when it comes to psychosis. Mainstream providers say that antipsychotic drugs, even though they have side effects, can lower the long-term chances of mental breakdown, suicide, and violent outbursts, no matter how low the chances were to begin with.
But there isn’t much proof that the medicines make things better. And other studies show that staying on the drugs may actually make things worse and even cause brain atrophy, though these findings have been argued about. There isn’t much science in this area, which is a big part of a bigger problem in biomedical psychiatry: there hasn’t been much progress in treating serious conditions or even in diagnosing and understanding them. A 2019 lead opinion piece in The New England Journal of Medicine said, “Something has gone wrong in both academic and clinical psychiatry today.” It said, “We are up against the severe limits of biological treatments.” “There is no full biological understanding of either what causes psychiatric disorders or how to treat them.”
The World Health Organization put out a 300-page directive on the human rights of people with mental health problems last June. Despite coming out of a huge bureaucracy, it is a revolutionary document on the subject of severe psychiatric disorders. It questions the authority, knowledge, and understanding of the mind that biological psychiatry claims to have. It also says that there should be no more forced or unwelcome treatment and that the pharmaceutical approach to mental health care, which is the main one for psychosis, bipolar disorder, depression, and a lot of other conditions, should not be the only one used. The W.H.O. says that problematic drugs used in psychiatry can no longer be taken for granted.
To support its position, the WHO points to harsh words from Thomas R. Insel, who was head of the National Institute of Mental Health from 2002 to 2015, the largest funder of mental-health research in the world: “I spent 13 years at N.I.M.H. really pushing on the neuroscience and genetics of mental disorders, and when I look back on that, I realize that while I think I succeeded in getting a lot of really cool papers published by cool scientists at fairly large costs, I failed to get a lot of.
“Better results,” says the WHO, “will depend on a re-evaluation of many of the current assumptions, norms, and practices, including a different view of what “expertise” means in mental health.” Michelle Funk, a former clinician and researcher who is now leading the WHO’s work on mental health policy, law, and human rights and is the main author of the report, told me that current clinical assumptions need to change drastically: “Practitioners can’t put their knowledge and experience ahead of the knowledge and experience of the people they’re trying to help.” Not only can the side effects of psychotropic drugs and the power imbalances of locked wards, court-ordered outpatient care, and even seemingly harmless practitioner-patient relationships hurt outcomes, but a single focus on reducing symptoms, a professional mindset that makes people feel like they are seen as checklists of diagnostic criteria instead of as people, can also hurt outcomes. Funk said that many people in the health field believe that people with mental health problems have a defect or disorder in their brains. He said that this belief can easily lead to a loss of identity, hope, self-stigma, and isolation.