by August (he/they)
In current media, there’s a concern around being “woke” and having characters that not only represent a marginalized group, but represent them well. Otherwise, they end up falling into the token category and are waved off as being relatable for the sake of brownie points. The token black guy to fill out an otherwise all white cast. The token woman in a group of men that can’t overcome her libido and inevitably falls in love with one of them. The token queer character that also happens to aggressively and harmfully use AAVE, even though they themselves are cis white men. It’s a little strange, but this popular character archetype is a good way to describe myself.
Born AFAB in 1990 to refugee parents from war torn Central America, I eventually grew into a 30 something year old with a solid grasp on my identity. Nowadays I describe myself as a proud disabled, latinx, non binary lesbian, and I can’t help but laugh at the fact that if anyone read that about a character, they would roll their eyes and think it was just another case of pandering to as many audience members as possible. Truthfully, in certain ways I do see myself as a background throwaway character in my own story. I haven’t quite found my true footing and juggling every aspect of who I am is sometimes impossible so I often fall to the wayside of someone else’s story. And in that mess, my disability is the hardest identity to navigate.
To the surprise of my parents and the doctor, I came into the world with Spina Bifida Myelomeningocele. The lower part of my spine didn’t develop correctly in the womb, leaving me with weak legs, partial paralysis and general ambulatory issues. Although it’s a fairly common birth defect in the United States with 1,400 babies affected every year, it’s still such an alienating identity. Just like water, it can take many forms and most days I feel like a drop in the ocean; indistinguishable, unknown and ready to go feral over an unsupervised pack of Cheddar Goldfish.
I joke of course, but growing into my disability left me with an unfulfilling childhood. Every few months I was recovering from ongoing corrective surgeries, leaving me with little time to develop my social skills. Elementary school felt like 5 years in and out of the hospital, which inevitably molded me into an angry, awkward teen. I certainly wasn’t justified in some of the cruel things I said and did and looking back on them I regret speaking that way to the people around me, but my cries for help were overshadowed by my disability. People expected me to lash out and hurt, not only because I was growing up, but because of the tragedy of my life. Every curse word, every threat I made, was laughed off and all they had to say to me was “I’m proud of you for making it this far.”
Infantilization is such a problem in the disabled community and as an adult it’s an everyday occurrence. It’s a phenomenon that occurs when an adult treats, talks to, or otherwise sees another adult like a child that needs to be coddled. You are spoken down to with that “baby talk” tone, you are spoken over, and you are seen as fully incapable. Although this does happen on an interpersonal level, the biggest offenders happen at institutions. My entire primary and secondary education was almost exclusively infantilized. It often felt like being shoved in a closet (no pun intended) and left there until it was time for me to graduate. Although I can’t directly blame the school for not having more students that had ambulatory limitations, it was still obvious they had no idea what to do with me.
The majority of their disabled students had TBI (Traumatic Brain Injury), which meant round the clock care, higher attention and focus. While I did have some challenges and a learning disability that was shockingly never addressed, I still felt like I could sit in a regular class with my friends and learn alongside them. But expecting schools to have a grasp on disability education in 2004 was like wishing for the moon. In the end, I was assessed many times with very little follow up, I had no emotional/mental support when I was overloaded, and the only thing documenting my disability was an IEP (Individualized Education Plan) that seemed to collect dust on a shelf. I did take a few regular classes with my peers, but in the mix was an advisory class that was nothing more than a daycare for all the disabled kids. There was nothing to do, and I spent an hour of my day just twiddling my thumbs in boredom. I looked to my teacher in that class as just a nurse for the other kids, while I spent my time getting frustrated over schoolwork. I don’t blame the other kids for needing help, but I was placed at that same level with them and when I didn’t need anything medically, I was simply cast aside.
Just like that, I was stuck in limbo.
To the school's credit, I often found myself in parent teacher conferences. I wasn’t a great student, so my studies always came under question. My teachers were understandably upset with me, hoping that I would put more effort in than I did. When faced with this conflict, my parents were very adamant that me being disabled was a good enough reason to let me skirt by. I could only promise that I would do better, but with a lack of support from home as well, nothing would change. While it is admirable to advocate for your child, doing it to avoid solving very real issues is less than.
Still, my highschool experience taught me something very valuable; despite everything I represent and the different identities I carry with me, having a disability blanketed all of them. I’m not just Latinx, I’m a disabled Latinx. I’m not just queer, I’m a disabled queer. Existing in a space means having to accept that my disability dictates how I interact with that space and whether I like it or not, my disability comes first. I always do my best to embrace this fact, but in certain situations, especially those that deal with the government, sometimes I have to let the bad guys win.
Claiming a disability is a different experience than claiming an ethnicity or a gender, and infantilization is to blame for that. According to the CDC, 61 million adults in the United States are currently living with a disability, or 1 in 4 adults. Yet despite occurring in roughly 25% of the population, it’s common knowledge among the disabled community that you often have to infantilize yourself in order to get what you need. I’m not saying you should flat out lie and make grandiose statements that you could never back up, but oftentimes you’re forced into a corner where you have to stretch the truth just a bit in order to be heard. Growing up, my parents made sure I knew how to capitalize on my physical disability. During any evaluation, I had to make sure I really sold the fact that my disability was debilitating, that I cried myself to sleep every night due to chronic pain and that I knew I would never be normal, but that I still lived life with a smile because I was just so brave. Are any of these lies? No, not technically. But a combination of factors make this a persistent reality.
It’s not uncommon for someone to take advantage of services for those with disabilities when they themselves didn’t have any, so the process of getting any help means you have to really sell yourself. You have to exaggerate and you have to have more than enough proof that your claims warrant getting sufficient help. As a recent example, I used to be able to get unlimited time with physical therapists, but because of past frauds, I can now only sign up for 6 sessions at a time. If I want to renew it, I have to go through another assessment.
My disability is stable, but lifelong. Yet if I don’t have the right paperwork, the government suddenly thinks I’m lying and I have to be thoroughly assessed. It’s absurd but I’ve literally had to wait for them to decide if I was still disabled so that I could continue getting benefits. How is it that I’m living a life where my own judgment on my abilities is never taken seriously and I need able bodied people to give their seals of approval? I don’t understand this obsession with using infantilizing prerequisites to legally determine if someone's disability is “passable”.
It’s this concept that has really put a wedge between me and my parents growing up, because I always had to “play up” the part of my disability. It had gotten so bad at times that I had begun to feel like maybe I wasn’t as capable as I thought and everyone around me was right. I have such an unstable trust in myself that I’m so scared of doing adult things because I’m treated like a child; not because I’m AFAB, or I’m brown or I’m queer, but because I’m disabled. All of these issues have blossomed from a childhood where I was never really allowed to grow up. And when your mental age is stunted, it creates even more problems when you want to start doing more adult things.
At my grown age, I’m more than happy to step into the dating pool. But even there I’m fighting for my life to prove that I want to find a decent and hopefully lifelong partner. My disability comes first and I’m often interrogated in what I truly value in a partner. I’m a grown ass person, but it’s always assumed I want to date someone willing to be my home nurse. The idea that I need a romantic partner to take care of me like that is definitely puke-worthy and yet there are some people out there who revel in the idea of being that for me. I’ve had potential partners look me dead in my two eyeballs with absolute sincerity as they spoke about how excited they would be to be my home nurse. They were excited at the thought of helping me shower, organize my medications and be my chauffeur.
I hate to burst anyone’s bubble, but this goes well beyond what I would see as a considerate partner.
Do I shame them for wanting to be helpful? No, of course not. I think it’s wonderful to have a partner so willing to be there for you through thick and thin and I certainly don’t speak for the entire disabled community. It goes without saying but disability at a young age means being worried no one will be there with you when you reach your elderly years and you run the risk of being fully dependent on others. But I could not personally live with someone who thought that their whole world needed to revolve around treating me like an infant. I blame society for not teaching the able bodied world about what is and isn’t appropriate when interacting with someone like myself. I blame them for not being able to separate my disability from my sexuality, and yet here I am in yet another facet of my life having to accept that my disability must come first. I can’t just date someone; I have to make sure they understand that I in fact don’t date just so I can have someone wipe my ass for me before we hop into bed and cuddle. Even just typing that out grossed me out a bit.
It’s 2022 and I wish I could say I’m truly happy with where the United States is in terms of disability advocacy and rights. And while I am grateful I’m no longer placed in a box away from society and that there are people and organizations out there who genuinely want to listen to me rant and rave about the ethics around having a single elevator run an entire building, I fully believe there’s room for improvement. I don’t want to have to think about my disability so closely, but in a world where injustices like shooting an unarmed, Deaf man simply because he couldn’t cooperate with the verbal police exist, it’s hard not to. It’s hard to feel like I am financially stable in between jobs when Social Security believes that $900 a month is good enough for you to live comfortably in California. It’s hard to feel like I belong, when all I hear about is how I’m a leech for living off of the government, how accommodations are excessive, and that I just need to pray more if I want to be normal.
It’s exhausting being disabled in all parts of my being. I wish I could hop out of bed everyday and have my life together, get rid of my depression and anxiety and get things done. But wishing for the impossible does nothing but remind me of how much more there needs to be done. As an English speaking American, I recognize I have privileges, but with my education came a critical eye for the system I have to live with right now. Things need to be done, things need to be said and as long as I can breathe, I will make sure that everyone knows that we are here and we will no longer be token characters in our own stories.