Why am I not likable? This question has been the bane of my existence since I was old enough to realize that people can be mean to one another. I have always been too much: too assertive, too negative, too loud, too something.
When I was in middle school, I was constantly referred to as “crazy” due to my energetic sense of humor. In high school, I was scolded for my sarcasm and strong opinions. In early adulthood, I was “too assertive” — even as I was being praised for making things happen. I could maybe brush this off as misogyny, or my Queerness somehow subverting social expectations, but it’s always seemed like — for one reason or another — the problem is me. And I’ve never been sure exactly what my problem is.
I have my suspicions, but the kicker is that no one actually seems to care why I am the way I am. They just want me to act only in ways that make them comfortable, or go away. And this is a theme — as a society, we don’t react well to discomfort or difference. Racism, queerphobia, xenophobia and a long list of other hatreds are not dead, and though there are those who would say that we live in a post-colonial world, there are also those who would say that colonial norms are alive and well and still harming people today.
Recently, after accidentally falling down a rather deep Google rabbit hole, I learned a new term: Mad Pride, which, in simple terms, is a movement trying to encourage society to view neurodivergence and other mental illnesses in a more positive light. “Mad” is a reclaimed term, meaning that, although it has been used in a derogatory manner in the past, people once targeted by the term now use it to self-describe themselves. Mad Pride as a movement began in the 1970s in response to coercive treatments in mental healthcare, which all too often attempted to subdue a patient and emphasized productivity and adherence to social norms, sometimes at the expense of actually improving their quality of life.
Finding a Mad Pride event is a bit harder than finding a sea of rainbows in June; there are a handful of events occurring around the country this summer, but certainly not in every town. There have even been articles that refer to Mad Pride in the past tense, as though the movement is dead, though I’ve already been able to connect with a number of people who disagree, and still identify with the movement in some capacity.
Perhaps they identify with the term Pride because mental illness still comes with stigma. As a society, we’ve arguably made some strides in recent decades in terms of mental healthcare. The stigma surrounding therapy has lessened, and more professionals now advocate for outpatient treatments, like talk therapy and medication, as opposed to long-term institutionalization. But that doesn’t mean that the current system is without its problems, and the stigma has certainly not died out completely. Why is it that, even as many of us are getting better at acknowledging the fact that anyone can face any number of challenges with mental health, we still reference it with derision? Why is it so common to hear the words “you need therapy” spat out in anger? Why do so many try to “diagnose” those they find challenging?
What is madness anyway?
Recently, I spoke with Laura Yakas, a lecturer at the University of Michigan School of Social Work with an interest in Mad Pride. She Zoomed in from New Zealand, where she grew up, and where she is currently staying while she teaches remotely.
We started by getting clear on terms. While I had always thought neurodiversity referred primarily to conditions like Autism or ADHD, Yakas said she uses it to refer to mental health conditions more broadly. Yakas also differentiated between innate neurodiversity, which a person is born with, and acquired neurodiversity, which is often caused by trauma. For example, Autism would be considered innate and a condition like PTSD would be acquired.
Yakas further argued that there is a lot of overlap between madness and neurodiversity, and different people may prefer one term over the other for a variety of reasons. As a result, these terms are often used interchangeably. But, Yakas emphasized, someone who identifies with the ideals of Mad Pride would likely say that none of these conditions mean someone’s brain is “wrong” or “broken.”
Whether the condition is innate or acquired, and whether we choose to refer to it as madness, neurodiversity or mental illness, the history is complicated. What counts as madness varies, at least in some part, based on the place and time a person is living in.
“Neurotypical … doesn’t mean normal,” Yakas explained. “It means someone whose neurotype is not being pathologized in their particular culture at this time.”
Queerness, in the not too distant past, has been both criminalized and treated as a mental disorder. Famous computer engineer Alan Turing, a man who played a key role in helping the Allies win World War II, was famously subjected to court-ordered chemical castration because he engaged in consensual same-sex relations at a time when it was illegal. “Female Hysteria,” was a historical diagnosis that encompassed a wide and variable array of mental or somatic “symptoms,” like depression and a “roaming” uterus. And before the Civil War, some doctors used to diagnose runaway slaves with “drapetomania.” This diagnosis referred to a “mental illness” that made slaves want to flee plantations.
There are still racial disparities in mental health diagnosis today. According to one study, Black people are about 2.4 times more likely to be diagnosed with schizophrenia than white people. While it could be argued that this could be due to the added stressors of systemic racism, at least some of this disparity seems to come from overdiagnosis. Having a marginalized identity clearly makes someone more likely to receive particularly stigmatizing diagnoses.
“The same person who’s white will be labeled with PTSD and anxiety, and a Black person would be diagnosed with schizophrenia and conduct disorder, or something, for essentially the same behaviors,” Yakas said.
Yakas also argued that madness is, at least in part, socially constructed. There has been somewhat of a cultural shift in recent years in terms of viewing diagnoses like Autism and ADHD as a form of neurodiversity rather than as diseases needing to be cured. Autism Speaks, an organization known for seeking a cure for Autism, has recently come under fire because they’ve long operated without input from autistic people. Applied Behavioral Analysis therapy, meant to help autistic people develop skills to improve and manage their behaviors, has also been frowned upon by the autistic community because of its focus on eradicating common autistic behavioral traits, like stimming, and promoting neurotypical ones, like maintaining eye contact.
Part of the reason that debates like the one surrounding the treatment of Autism exist is because of the increasing vocalness of the autistic community. Stigmatization can prevent voices like those of mad or neurodiverse people from being heard. Yakas offered up a term for this phenomenon: saneism, a variation of ableism.
Because of saneism, mad people are often denied the ability to define their own experience — as evidenced by the push to cure autistic people of something much of the community doesn’t view as a disease. Of her own experience, Yakas said that the messaging she received was, “I have a broken brain. Nothing that I’m saying is real. Everything is irrational.”
In many cases, stigma prevents mad or neurodiverse people from being able to define their own experience. It can also prevent mad people from entering mental health professions, which means that many of those treating mental illness don’t have lived experience.
I’ve experienced a similar problem when it comes to physical disability. I’ve lived with severe scoliosis for most of my life. At various points, doctors have made statements about my experience that simply weren’t true. One nurse once told me that I shouldn’t have motion in my thoracic spine. I responded by doing a backbend down to my elbows. Another time, when recovering from surgery, I was unable to cough effectively and ended up choking. I gasped out that I couldn’t breathe and was told, “Yes you can.” In every case, the doctor’s opinion mattered more than my lived experience. My thoughts on the situation didn’t matter because I wasn’t the one with medical training.
Shutting disabled people out of various professions, whether they’re diagnosed with a mental illness or a physical disability, is one reason we have situations where something can be labeled a problem by “professionals” even when the problem may have more to do with how our society handles differing needs. The Social Model of Disability is the idea that disability happens not because of medical conditions, but because of the ways in which society fails to accommodate peoples’ needs. I’ve written in the past about living with a physical deformity, and I can say with certainty that it would not bother me half as much if I wasn’t constantly worried about being “abnormal.”
This isn’t to say that mental illness or disabilities are never a problem. A mental illness is certainly a problem if it negatively impacts someone’s quality of life, and I don’t think I or anyone I’ve spoken to is saying that people shouldn’t have access to high quality, affordable mental healthcare if it can improve lives. If anything, I think that learning about Mad Pride has made me even more in favor of making consensual mental healthcare easily accessible. Part of self-determination is being able to access treatments and make informed choices.
But consent is the key word. Treatment needs to be about healing, not keeping society comfortable. It needs to center autonomy. It needs to be about individuals defining their own experience.
Why we need Pride
In a few days, it will be June — Queer Pride month. Following that, July will be Disability and Mad Pride month. For me, a Queer person with chronic illness and, as I’m learning, quite possibly a healthy dose of madness, summer is about Pride.
Yakas described her own experience with Pride and said it helped her accept herself for who she was, not what others told her she should be.
“I went through my radicalization and I discovered my Pride and discovered the concept of neurodiversity, and I was like, I’m not fucking wrong,” Yakas said. “I’m different.”
So why do we need Pride in the first place?
As I sit writing this, I’m about neck deep in preparations for Ypsi Pride, where I serve on the planning board. This year, as in the past, we’ve inevitably had to have conversations about what we might do if people who hate us come to the event. Maybe they’ll just blow off steam, wave their Bibles around and tell us to repent for our sins. But there’s always a chance it could escalate beyond that.
Because we still haven’t learned to be okay with difference. We’re still more likely to find something wrong with a person if they aren’t white, cisgender, heterosexual, male or neurotypical. Loving someone who is not the opposite gender, a normal brain variation, a crap ton of trauma outside of my control or a deformity I never asked for can still mean I’m broken. These things can still make me an “other.” They can still make me unlikable.
So how can we learn to question what we view as likable? As sane? How can we learn to stop treating brains as if they’re broken simply because they don’t follow the rules? We’re talking about a mass cultural narrative and undoing it isn’t going to be simple. But it does start within each one of us. Just like we have to question our privilege and rewire our thought patterns when it comes to racism, misogyny, homophobia or any number of other forms of prejudice, we have to call into question why someone else’s way of thinking, experiencing and interacting with the world makes us so uncomfortable.
We have to be more willing to put in the work to make the world accessible to everybody. We have to be willing to be around those who are different from us. We have to make it okay to be a little weird or maybe a bit difficult. We need to redefine likability and learn to be okay with discomfort.
We need to stop treating people like they’re broken.
Statement Correspondent Cydney Heed can be reached at cheed@umich.edu.
The post Our brains are not broken: Mad Pride, neurodiversity and how diversity becomes disease appeared first on The Michigan Daily.
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