Mad Out Loud

My essay from Tinfoil Hats: Stories by Mad People in an Insane World

Tinfoil Hats: Stories by Mad People in an Insane World is a collection of writing edited by Phil Smith and published by Autonomous Press. I wrote the following essay in 2020, and it was selected for the anthology, which was published earlier this year in 2023. Tinfoil Hats: Stories by Mad People in an Insane World is available for purchase in both e-book and paperback formats. As always, thanks for reading!

The translucent pill boxes.  The laminated hospital bracelets.  The safety levels.  The strip-search.  All the hours spent staring at the carpet in therapy offices, trying to justify my life through words that don’t feel like they fit right.  These things have happened to me.  Even now, grasping at gut feelings and whisps of my memory to form these words is like trying to capture the vastness of the ocean in a bucket.  I have been articulating myself over and over to what feels like little avail.  I tell curious and well-meaning people that “no, those aren’t my pronouns” or “actually, I am Autistic.”  I explain, explain, explain that referring to me as “high functioning” is an ableist aggression (before attempting to teach people what the word “ableist” means), that I am neither a man nor a woman, and that many things in my life—from my gender to my medical history—are “kind of a long story.”  I explain, rinse, and repeat in conversations with friends old and new, with family, with strangers, and with health professionals.  I noticed this cycle of articulation first with my transness, then my Autism, followed by the reckoning of such a combination.  Now, finally, I see this urgency embedded in my quest to articulate something I have come to know as “Madness.”

Much of the way we as a culture talk about how distress is treated signals acceptance of a linear kind of timeline, a trajectory that aims toward “recovery” from an ailment.  Generally speaking, the narrative of sickness is that the sick seek help, and that help makes the sickness better.   Professional intervention disappears the chaos of illness, or so many of us assume.  In my opinion, to “recover” implies the resumption of some kind of idealized “before” state, an existence before the onset of otherness.  But if I have no “before,” then what am I to recover?  I was born an Autistic; a neuroqueer Sensitive inclined toward Madness in response to a world—with its abrasive bustle and lack of sameness—which is not suited to a bodymind like mine.  I cannot “recover” what never was, but this is not the tragedy.  The tragedy exists in the negative space; the tragedy exists in how we as a culture do not address dynamics of Madness.

One might dismiss the following discourse as a game of semantics, but I remain confident that our word choices matter.  Do I have mental illnesses?  Am I mentally ill? Do I embody illness, sickness, disorder?  If I am “mentally ill,” I wonder exactly which parts of me are sick.  Does my illness lie embedded in my neurological structure?  Does it come alive with the intensity of my emotional states?  Am I disordered because of the ways I behave…or misbehave?  Who is determining what qualifies as misbehavior?  Through posing these questions, I have discovered the alternative frameworks of thinking that inform the Mad movement.  Combined with my growing knowledge of the overlapping Autistic self-advocacy and disability justice movements, I am starting to form stronger opinions about what it means and doesn’t mean to have a psychiatric diagnosis, to be a long-term mental patient, to be someone who hurts too much and wants the pain to go away.  It turns out, I’ve found, that just wanting to be rid of extreme emotional distress is extraordinarily complicated.

Between the ages of fourteen and twenty-two, I spent a collective eighteen months in psychiatric treatment programs.  During the same timeframe, beginning in my early teen years, I was prescribed a varied list of two dozen different psychiatric medications, often five or more at a time, up to three times per day, in attempt to contain my unruly despair.  I cried a lot.  I didn’t have any close friends.  I had panic attacks and sometimes dug my fingernails into my flesh to cope.  The prescriptions for pills piled up, one after another.  One psychiatrist I visited for a second opinion made the observation that my experience with psychiatric treatment appeared to be like “throwing spaghetti at a wall to see if it sticks,” which I now find both humorous and horrifying.  Some of my medications triggered allergic reactions or elicited bizarre side effects like extreme sensitivity to light or body convulsions.  Most of the medications, though, blend together in my memory as being largely ineffective.  I couldn’t and still can’t tease apart the effects of one drug from the effects of the next, which was compounded by the fact that I was on so many of them at any given time.  Of course, I don’t know where I’d be (or even if I’d be) if I had not begun taking medication, but from time to time, I wonder.  Would I be different?  Would that difference be “better” than my life now?  Again, what does “better” mean, anyway?

As a years-long psychiatric consumer, I was—and to some degree, still am—so desperate to escape misery, no wonder I took every pill I was prescribed.  Being a patient isn’t much of a choice when it’s the only choice you have.  What if what I needed most wasn’t an ever-changing cocktail of drugs and safety checks every fifteen minutes, but rather the feeling of peace in my own skin and the comfort of having good friends to count on?  I have no easy answer.  It was simpler, after all, for adults to instruct my younger self to swallow a benzodiazepine after a meltdown and sleep off the panic than it would have been to help me along in discovering my own identities, in beginning my gender transition, in maintaining a first meaningful friendship with a peer based on mutual understanding.  I don’t blame myself.  I am instead growing critical of this system, this industry, which all too often seems to not acknowledge its own faults.

It baffles me that the science—perhaps the art—of prescribing psychiatric medication is one that seems to lean so heavily into chance.  When I went to the doctor with a simple infection, I was prescribed an antibiotic to clear it up.  After taking the pills as prescribed, the infection subsided, and my symptoms disappeared.  My emotional distress—along with the distress of countless people like me—is nothing like having Strep Throat, but these wildly differing cases are funneled through the same Medical Model of Disability.  Feeling too much can be a symptom.  So can scratching at your arms until you begin to bleed.  Avoiding eye contact is a symptom.  Hell—avoiding anything itself can be classified as a symptom.  Many of these parts of my life—these “symptoms” of mine—arose out of the conflict between my inherent neurotype and a world of deeply ableist and saneist power structures.  These traits and behaviors are not merely purposeless symptoms of sickness or displays of psychopathology; they are harm reduction tactics, damage control, and a means of self-protection.  But they have been medicalized, even vilified, so I am expected to work toward being rid of them.  I am supposed to tell a nurse when I am thinking of scratching at my arm.  I am supposed to surrender anything I could use to hurt myself.  I am supposed to catalog my feelings, write them down, rate them on a scale of one to ten.  I’m supposed to take all of my pills exactly as prescribed by my physician.  Supposed to, supposed to, supposed to…

Right now, I remain very much “in the system” as a psychiatric consumer.  Moreover, I have long embodied the trope of the so-called “good patient” since entering into the system as a child.  A “good patient” exemplifies the narrative of the ideal consumer who is willing to abide by doctor’s orders; it is someone who exhibits gentle compliance and doesn’t ask too many questions or make objections.  As a result, “good patients” are met with praise and trust.  In psych hospitals, “good patients” don’t have their outside time or phone privileges revoked.  Consumers who fail at being “good patients” often lose their right to privacy, bodily autonomy, or some combination of the two.  The thing is, the “good patient” is both a reality and a false construct.  Nobody is inherently or ethically “good” or “bad” at being a patient or services consumer.  Rather, these narratives are constructed around us and then plastered upon us.  Being one of the “good” patients has served me well, to a certain end.  I report symptoms and feelings, I gauge my own safety and promised not to seriously harm myself, I show up to every therapy appointment on time, and I take my meds.  I am compliant.  Even when I was fourteen on an inpatient psychiatric unit, I saw that this kind of behavior was a gateway.  Because of my compliance, I was allowed to go down to the cafeteria for mealtimes, I was allowed ten minutes of phone time at the end of the day to call my mom and dad.  And, after the minimum length of stay, I was allowed to walk out of the locked doors and return to my life…all because I was one of the “good” ones.  Every now and then, I have nightmares about being one of the “bad” psych patients.  I would say more specifically that I have nightmares about being a psych patient whose autonomy and self-determination are compromised, but I figure that right now, to me, being a psych patient has been inherently linked with compromised autonomy and obstructed self-determination.  In the nightmares, I’m trying to escape a locked ward only to find that the elevator is broken, or I’m lying on a gurney, pleading with figures hovering over me who threaten me with injectable sedatives.  I am begging, begging, begging to be believed.  Then, I wake up. 

It goes without saying that behind each doctoral degree is a flesh-and-blood human being.  Every single person who walks into a psychiatrist’s office is, in fact, a person.  But only one of those people has the prescription pad.  Only one of those people wears the white lab coat.  Only one of those people is taking notes, conducting analysis, and, importantly, receiving payment from the other.  Only one of those people, depending on the setting, can have the other ordered to be locked in an empty, padded room or physically or chemically restrained against their will.  For these reasons, (as well as many more nuanced factors) the relationship between a psychiatrist and the person seated on the couch across from them is unequal in its balance of power.  This differential is one major aspect of being a psychiatric consumer that I think is underdiscussed outside of the Mad movement.  I have experienced a striking lack of personally satisfying discussions about this power imbalance with people who aren’t patients, consumers, or survivors of psychiatric treatment or abuse.  This is not at all to say that medical doctors are generally incapable of non-harmful participation in such conversations.  I do believe, however, that holding conscious space for the consequences of the doctor-patient power differential to be properly acknowledged and explored takes a seasoned knowledge of interpersonal and systemic power intricacies, as well as a thorough understanding of how and why power differentials have been historically weaponized against vulnerable populations. 

When I try to articulate what it has been like for me to have been a long-term psychiatric patient, I find myself tripping over my words.  It feels, in a way, parallel to the desperation I felt during the extreme mental states that accompanied the Serotonin Syndrome I experienced at fourteen.  A whirlwind mixture of fear and anger; a deep-rooted wariness of (and also a frantic pressure to appease) authority figures borne out of my being tricked into powerlessness.  Beginning to think critically about the mental “health” system has been like opening a kind of Pandora’s Box.  I have tapped into an array of knowledge and emotions about what I have experienced, as well as a growing vocabulary I can use to articulate myself.  Trying to put all of this into words is difficult and complicated and tiring.  I know what I have to say may cause others to disagree with me, which is scary.  But when I wake up each morning and take my medications with a growing sense of disillusionment; when I leave yet another therapist’s office after an unsatisfactory session; when I toss and turn at night thinking of everything I’ve been through and where it has and has not led me, I am the only one who lives with the feeling that follows.  So, I have come to the conclusion that however tedious or tiring the process may be, I need to speak and share more about how I experience my own bodymind and the consequences of living a life like mine in the midst of an ableist, saneist world.  I need to be Mad out loud.  To be Mad out loud means I must work in the direction of a Mad identity that is political in addition to deeply personal.  It means listening to my intuition, and it means valuing the sound of my own voice even when it speaks alone.  I anticipate that this will be an arduous process which will last not only for the duration of my lifetime, but long after.  Here, I am thinking of the generations of people just like me who were—and continue to be—lost to a system which, however well-intentioned, has in many ways replicated the very harm and disfunction it has aimed to treat.  I am thinking of icepick lobotomies.  I am thinking of the countless queer survivors and non-survivors of conversion therapy.  Scores of nameless headstones marking the final resting places of the restless on the grounds of abandoned asylums.  Autistic children who whose joy and communication are shushed with “quiet hands.”  People whose freedom, bodily autonomy, and dignity may or may not be returned to them after seventy-two hours.  I am Mad out loud for them.  I am Mad out loud for us.