I Was There 3: What If We Imagined A World Without Scripts?

Before we get started, I must also acknowledge my privilege. You can't understand how bad I had it without understanding how good I had it. Despite some bumps we’ve had, I have a good relationship with my parents and they’ve been very supportive during recent events. I’m able to live with them with my mom only asking for 30% of my income in rent, so I haven’t been forced to work, in spite of chronic illness. I also have good health insurance through my parents that has been very helpful in recent times. My mom is also autistic, COVID cautious, and chronically ill with Long COVID, disautonomia, an immunocompromisation, and POTS, so she understands how bad it is. I’m able to eat high-quality, MCAS-friendly food all the time and I know how to cook and at least currently, have the physical capacity to cook, so I’m able to take care of myself reasonably well. I can’t walk around the block on a bad day, but I can whip up a batch of mean peanut noodles, or even just a fairly basic pasta and meat sauce.

For the past months, a question has taken over my life. Ever since getting kicked out of college for being too mentally ill and slowly realizing that I’ve become a part of the 29.4% of students who enroll, but don’t graduate. I’ve seen a friend of mine fall into this category, but I never thought I would too. When thinking about statistics that are applied to the population, the actual way they fall out is completely unintuitive. Statistics are supposed to be fair, that’s what I had assumed. Those who are marginalized often face it from multiple intersecting marginalized groups they’re a part of. You can reasonably expect to be in the majority when you already are in the majority. Those first to fall to statistics are those already most vulnerable. The queer, the neurodivergent, the disabled, and the non-white. I happen to be all 4, and more! Let’s be honest, the game of capitalism is always rigged, but I had to deal with an extra rigged version of it. I hadn’t realized this at the time. For a while, the only framework I had to process the disability was what my mom gave me back when I was formally diagnosed with autism, which is the idea of being “Neuro-Beautiful”. I “grew up” with the idea that I was just “differently abled” in a sense. It left me unprepared for the reality that I am, in fact, disabled. Furthermore, that framework feels very assimilationist and feels as though it’s denying the reality of my condition. In doing so, it also robbed me of the ability to find community with other disabled people.

These days, I’ve developed my own framework for understanding how it all impacts me. I describe it as “Disability Nihilism”, where I stop expecting capitalism to work for me because it never was designed to work for me. It’s a practical approach for me that doesn’t explicitly say specific conditions are good or bad, just that they exist and some aspects hinder me and other aspects help me. To use a metaphor, life is a river and while a river may always flow downstream, in the rapids the flow is going in every direction. I’m not an optimist or a pessimist because my life is too complicated to generalize at that scale. My disability won’t change, but the system that is disabling me can change. This also explains my endless passion for social justice, plus being radicalized by my experiences. Can you really expect someone to try to see the best in things when they’ve only been shown the worst? 

When I was 16, I realized I was plural and told my therapist. During our next meeting, my therapist heavily encouraged me to play it off as a joke so she wouldn’t have to send me to the psych ward to be assessed to see if I was a danger to myself. For context, plurality is a new framework to understand the “multiple personalities or identities in one mind” class of mental health conditions. I’m being very careful here to avoid the term “disorder” because it really isn’t one. The other personalities aren’t harmful and I remember what happens while they’re in control, it’s a nice break from having to exist. Let me make myself perfectly clear here, the alters do not make me a danger to myself or others, it’s the other mental health issues that do that. The alters do the opposite, they help me deal with chronic stress by offering a break at times. Whenever plurality shows up in media, there’s always this subtext of spectacle. One of the alters is secretly evil or something. For me, I have an extra two personalities that are just as cool as me that show up sometimes. How can I reasonably expect to get good quality care for my issues if I am constantly under threat of institutionalization for saying the wrong thing?

All this also explains my current political position. The world actively wants me dead for a half-dozen reasons and yet I persist. In more modern times, I’m settling into the limitations that my conditions present me with. With my parents out of town indefinitely, I’m wanting to go to The LGBT Center more to socialize, but I realistically can’t since I need 2 days to recover from the PEM that even a single trip unleashes. This is actively worsening my mental health by reducing how much social interaction I can get. I’m reduced to being unable to hold my phone up to my ear for an extended phone call or even just to text without my arm cramping. It’s 70 degrees inside, but I’m in long pants, socks, and a hoodie just to stay warm. Just 2 years ago I was able to wear shorts through any winter time conditions without issue. I was unable to register to vote in time for the 2024 presidential election because I couldn’t walk 1.1 miles to my local polling site, rendering me disenfranchised by disability.

Disability and mental illness are where your rights go to die.

Alright, if you don’t believe me, here’s a thought experiment. How would your doctor, therapist, or psychiatrist react if you informed them you went off your meds? I was kicked out of college for, in part, being perceived as off my meds. I was described as “out of control”. Your bodily autonomy gets slowly eroded by the expectation that you are to remain “in control” or “safe”. You are compelled by threat of persecution to continue on your medication as defined by your doctor’s orders. I’ll say it now so nobody takes it the wrong way, I’m not saying to go off your meds, I’m just pointing out their place in a wider system of control that you step into while you are disabled or mad. You can be executed in the streets for the crime of being disabled. Don’t just trust me, trust the statistics. According to this report, half of all people killed by the police are disabled. Insurance and income become matters of life and death even more than they ever were before, food becomes all the more important just as your earning potential is falling and making it unaffordable.

The problem when trying to heal from trauma inflicted by the mental health system is that you’re effectively forced to look outside of it to heal due to all the stigma around issues that got you traumatized in the first place.

Newer generations have socially destigmatized mental illness, but the medical stigmatization has remained. When you are mentally ill, you always have a gun to your head and the gun becomes less and less metaphorical as you become further marginalized. When I was in college, I struggled with mental illness for my entire Sophomore year, taking a medical withdrawal the first semester and ultimately being kicked out for being too mentally ill the second semester. Isn’t it fucking great how you can go through the hell of only being able to talk to your sister and closest friend for only an hour a day cause she’s in the psych ward for a week, then being isolated due to a break and only finding out that your antidepressant can increase suicide risk only after you already had a near miss with suicide cause your psychiatrist didn’t warn you, and then get kicked out of college for being too mentally ill? You see, this is completely fine because I had become a liability to the college with my near miss with suicide and I was already maxed out on other supports, so there was nothing else they could do. So what happened next was perfectly legal, but heinous in effect. By design, I was not informed of what was going to happen because they didn’t want me to kill myself before they could hand this bundle of liability off to my parents. On Tuesday, March 12th, I nearly killed myself during spring break. It was my mom’s 52nd birthday and she missed the call from my sister Vinnie because she thought it was birthday wishes. On Wednesday, March 20th, I received an invite to a mandatory meeting with John Gerald, Dean of Students and Title IX Coordinator. Remember this man because he will show up in a future IWT. Thursday, March 21st, I went to the meeting and was informed my dad was going to be there in person. Once he arrived, I was informed that the Emergency Withdrawal procedure was being activated on me and that I was to cease attending classes immediately and vacate my room by sundown. I was intentionally kept in the dark throughout the entire process so I wouldn’t kill myself before they could kick me out. I was a bomb and instead of trying to defuse it, they played Hot Potato and tossed it to someone else so it wouldn’t blow up in their lap. In a classic example of carceral sanism, the need of the organization to be liability-free overrode my needs as a person going through some very stressful and traumatic events. The exact things I was kicked out for were some class disruptions, allegedly not taking my meds, wearing the same outfits, and not doing my laundry. I was taking my meds the entire time and was consistently doing my laundry, which I’m proud of managing, despite the mental problems I was contending with. The near miss with suicide just gave them an excuse ot finally be rid of me cause he didn’t like me due to my social justice advocacy and a joke I had once made.

Later, in another example of carceral sanism and its consequences, I would be flat-out denied HRT by my doctor because I had recently been to the psych ward, despite it being an isolated incident that can be easily prevented from happening again. This, getting kicked out of college, and when I told my therapist about being plural, are all stories that hinge on the idea of “Safety”. In the current healthcare system, Safety is paramount. The term “Safe” is shorthand for a trio of questions, “Are you in danger by someone else’s actions?”, “Are you in danger by your own actions?”, and finally “Is someone else in danger by your own actions?” It is the fine dehumanizing line of carceral sanism where the rules of confidentiality don’t apply because now someone is in danger. There isn’t any nuance, it’s either you bend to conformity or face further repression for your mental illness. The second question is where the problems start for most people. Before getting kicked out by John Gerald, he asked me “Are you safe?” I tried to offer a nuanced answer, but he would only accept a yes or a no, so of course I told him yes. It’s an active threat to my autonomy and I didn’t want to know what plans he had for me if I said I was not. I guess we ultimately did find out what happens if I’m not “safe” in his eyes.

What happens after? That’s the question that has taken over my life recently. In media, my story would end with getting kicked out of college or ME/CFS disabling me this heavily. I don’t know what the future holds because things have changed so much already that I can’t predict how much more they can change. I am scared of what could happen soon. This part is being written before the 2024 election, so that’s an extra layer of why I’m so fearful. The rhetoric around the attacks on bodily autonomy, specifically the trans healthcare bans, are really worrying because they’re playing into the perception of transgender people being too mentally ill to know what’s best for themselves. COVID cautiousness has been seen in a similar light, with people still masking being painted as hypochondriacs. There is one memorable incident where an immunocompromised person was put on an involuntary psych hold because they wanted people to wear a mask around them.

So what happens next? I don’t know honestly, it’s up to all of us. With the looming climate crisis, masking is going to be all the more important to protect us from airborne toxins and particulates unleashed from wildfires and such. I know I’m gonna be focusing on my healthcare for at least the next year. Hopefully I’ll be able to find a good doctor for my chronic illnesses and start HRT soon at Callen-Lorde Brooklyn. I’ll continue doing activism stuff for sure. I don’t know a lot of the answers, but writing helps me find them, so I’ll continue doing this. Thanks for reading all this, it’s been more intense than usual cause I’m covering so much territory and some specific events that have been really traumatic. I’m being really vulnerable here because there is no other way to tell this story.