“I never would have guessed you have schizophrenia!” My fellow support group member says it as though it’s a compliment. “You’re so articulate.”
I know social etiquette dictates I say something in response. But I just…don’t want to. I force a smile. I wear lipstick on days like today when my diagnosis makes me feel disgusting.
“Yep,” I finally muster. The group moves on. But the woman’s comment lingers in my mind.
I frequently experience microaggressions disguised as praise. A therapist once attempted to reassure me by saying, “I don’t think of you as schizophrenic.” These comments imply I’m the “good one.”
I struggle with survivor’s guilt. Being “well-presenting”—our community’s preferred term over “high-functioning”—is a form of privilege. Yes, I work hard at my recovery. But some working just as hard experience profound symptoms daily.
While the “bad ones” are banished to psychiatric wards, jails, and the streets, I get to enter spaces where decisions are made that define the circumstances of our lives—spaces ruled by doctors and caregivers staunchly in favor of legislation like California Proposition 1.
Disability rights groups have argued this proposition would expand involuntary treatment for people like me. Though Californians voted nearly two weeks ago, the vote is so close that the Associated Press has not called the race.
To many, I’m the perfect poster child for involuntary treatment. I managed to recover and return to work—something less than 30 percent of us accomplish—despite a particularly severe bout of psychosis at my onset. I graduated from U.C. Berkeley, communicate effectively, and can work a room thanks to my successful fundraising career.
But just because I’m in the room doesn’t mean I have a seat at the table.
There seems to be an increasing awareness that voices of members of marginalized groups must be at the forefront of those groups’ movements. Unfortunately, doctor- and caregiver-dominated advocacy spaces devalue lived experience.
The founder of one organization told me it was ridiculous for someone with a psychiatric disability to expect a speaking fee. Meanwhile, he paid clinicians hefty sums to speak at his events.
Months earlier, I’d received $500 to speak.
At another mental health organization, my performance review’s sole negative comment penalized me for an approved, week-long disability leave. While claiming to value lived experience, my employer refused to make basic accommodations to retain me.
A third organization’s leaders told me again and again to erase “mental health condition”—my preferred label for schizophrenia—from my vernacular. This term makes schizophrenia less alien and scary by grouping it with depression and anxiety. Instead, they insisted I use “brain disease,” which does the opposite by foregrounding the condition’s perceived severity.
This term reinforces a biological understanding that positions faulty cerebral wiring as the culprit for schizophrenia. While this reduces blame for individuals with this condition, several studies from the last decade have shown it increases beliefs that people like me are unpredictable and dangerous and don’t recover.
This is why lived experience voices are essential: Without them, those claiming to help us only increase stigma.
One of the most harmful stereotypes about us is that we’re violent and dangerous. Media and public perception dramatically exaggerate the prevalence of our violent behaviors. Though mental illness never ranks among the top five risk factors for mass shootings, a 2013 study revealed 48 percent of Americans perceive it to be the top cause. A 2022 study found 55 percent believe this. And schizophrenia stigma is only increasing, as it has for the last two decades.
For the record, the vast majority of us are not violent. And people without mental illness commit the vast majority of violent acts.
Yet the Treatment Advocacy Center, a nonprofit organization dedicated to expanding involuntary treatment, selected Jonathan Rosen as the keynote speaker for its 25th anniversary gala in September. They could have selected someone thriving with schizophrenia. Instead, they chose the author of a memoir about his best friend from Yale Law who murdered his fiance in psychosis in 1998.
They chose Rosen for the same reason the “brain disease” organization preferred a stigmatizing term: Because these organizations will say literally anything to expand involuntary treatment.
My heart hurts for families who’ve lost loved ones to untreated schizophrenia. But I, along with many of my peers, understand how involuntary treatment enables rampant abuse of psychiatric patients.
Though medical staff can legally sedate us only if we’re a danger to ourselves or others, far too often, they do it to make us easier to control. In one psychiatric ward, I witnessed a nurse threaten to sedate an old man because he called her an “ugly old hag.”
The first time I was sedated, medical staff undressed me. I later learned that was illegal sexual assault.
My favorite YouTuber, Lauren Kennedy, was also stripped down and sedated during a crisis. But they didn’t wait until she was unconscious.
We understand involuntary treatment’s nuances. And we sense stigma better than anyone because we live it daily. No one is more qualified to advocate for our holistic needs, including but not limited to treatment.
Expanding involuntary treatment does not justify reinforcing harmful, inaccurate stereotypes. Why can’t we argue for its potential to save us rather than its potential to prevent our extremely rare acts of violence?
And yet leaders of organizations willing to say anything for involuntary treatment wonder why more of us don’t come forward to advocate. The “brain disease” organization’s leader once remarked, “Where are all the badass, super smart young women like you thriving with schizophrenia?”
This same organization vetoed my suggestion of speaking out for Disability Pride Month for being “counter to their goals.” As though shame was necessary to keep us taking our meds. Months later I wrote a Slate article arguing a pride movement could improve our outcomes and quality of life.
And this same organization’s leader nonchalantly said, “Remind me, was that in the gun bill?” of a bill to expand our resources.
“Thank god it’s not in the gun bill,” I replied. “That might have done more harm than good.”
Yes, I’m a schizophrenic. But I am nobody’s token.
login
who are we?
contact us
qosheapp
Toi Staff
Gideon Levy
Belen Fernandez
Andrew Mitrovica
Mort Laitner
Nikkei Editorial
Ali Fathollah-Nejad
Rami G Khouri
visit website
