Recently, I was in the grocery store, minding my own business, when I heard, “Daddy, what’s wrong with her legs?” I looked to the right and saw a young boy with a now-embarrassed father, who quickly shushed his son. The dad made eye contact with me, trying to relay his remorse through his furrowed brow. I stepped in, as I have been trained to do, before he could verbally apologize for his son. “It’s no problem, I am in a wheelchair because I was born with a disability.” The father’s shoulders sagged in relief. He introduced his son and I am cued to teach the boy about disability etiquette.
I know how to have these conversations because I have been having them for as long as I can remember. Let’s ask the disabled student about disability! What is it? Why do you have it? I’m so sorry! Wow, your wheelchair sure does look fun! I was born with a neuromuscular disability (similar to Muscular Dystrophy). I have used adaptive equipment my entire life and began using a motorized wheelchair full time in elementary school. I have always faced obstacles surrounding accessibility and inclusion, which, from a young age, has led me to deal with overwhelming anxiety. Now, I am a 19-year-old undergraduate student and I can see that my mental health is intrinsically linked to my disability. There is no way to separate the two.
I learned very early on that able-bodied people know it is rude to ask extremely personal questions to other able-bodied people, yet they expect me to divulge personal information at their request. People feel emboldened to ask me personal questions as if we know each other. Throughout my life, this has always confused me. What is it about me that makes perfect strangers feel comfortable asking me about my body? Do they think that just because I am in a public space I am open to public inquiry? Sometimes when I am strolling through Safeway, I feel as though I am a guest on a late-night talk show: No question is off the table.
I often feel that the easiest and fastest way to exit these conversions is to give people the details and explanations they want. What is the alternative? I tell this young boy that his question is inappropriate and he moves forward in life seeing disabled people as rude or intolerable? Instead, I play the role of resilient neighborhood role model, always up for inspiring those around me and offering insightful metaphors for life’s obstacles before returning to my actual life
“I have always faced obstacles surrounding accessibility and inclusion, which, from a young age, has led me to deal with overwhelming anxiety.”
When people talk about me, they tend to mention how happy and friendly I am, how they are comforted by my approachability and welcomed by my easy-going nature. While I think these things are true, I also understand that under the layers that disguise me is a rage I struggle to come to terms with.
For my entire life, anger has been a part of my essential self. I lose all ability to walk on my own: angry. I have to be separated by my class to use the elevator: angry. I cannot share a limo with my friends at prom: angry. I am a complex and multidimensional person who, along with being very positive, is also mad a lot of the time. Some of this anger streams from the interactions that I have either in person or online.
People commonly stop me while I am running errands, to say hello or ask how I am. These strangers check in on me as though I am not equipped to take care of myself. Even people I know, give me patronizing comments with suggestions on my writing or approving pats on the back for sharing my story. As I have aged and the impact that my disability plays in my life has expanded, I have been taught to suppress my urge to scream and throw things; I know that is not what others want from me because rage is scary. I have always wondered: If inaccessibility enrages me, why can’t I be mad?
Marginalized communities are historically chastised when they react to oppression with fury. When trans people fought against police brutality at Stonewall, it was seen as a riot rather than a protest; when women fight for the right to regulate their own bodies, they are accused of behaving irrationally; when BIPOC protest against racial injustice, white supremacy and police brutality they are seen as overreacting. Time and time again, marginalized communities have been demonized for expressing their anger, as though their feelings of rage are unjustified.
“As I have aged and the impact that my disability plays in my life has expanded, I have been taught to suppress my urge to scream and throw things; I know that is not what others want from me because rage is scary.”
People are most comfortable with me when I am not talking about the injustices that I face within a world that is not built around the needs of the disabled community. Society prefers I talk about how I overcame my obstacles and how they, too, can be resilient like me! When I am smiling and happy, I am the perfect role model, the disabled woman they allow to participate out of the goodness of their hearts, as a way to give back to the less fortunate.
While anger is only a small portion of who I am, it is a part of me that I have been careful to suppress out of fear of further rejection. Motivated by the discomfort expressed around me when I am angry, I have spent years reprogramming my emotions, reverting to sadness instead of rage. Melancholy is something that I can control, something that I bring upon myself rather than anger brought on by the actions or inactions of others.
I remember when I was a sophomore in high school, I was invited to a birthday party. The host of the party showed me images of her front steps, assuring me that I would be able to get in with one of my portable ramps. I was convinced this plan would work despite the fact that I had been let down so many times in similar situations. And so I dressed up, put on makeup, asked my sister for advice on my outfit, excited for this high school experience that I often missed out on.
When I got to the party, I saw that the staircase to her home was too steep for the two-foot ramp she told me to bring. I was again met with crushing disappointment. I turned around and went home as my friends made their way into the house, spending the night neurotically checking social media to see what I was missing. I was furious, at my friends for going to the party without me, at the host for getting my hopes up, and at myself for being so naive. I wanted to hold onto my fury, to go home and throw my things across the room, to break dishware, to scream and cry and yell at those who had wronged me, to curse the world that constantly worked against me. Instead, I went home and spent the night crying.
“When living with a disability, coping is one of the first things you learn. In order to survive, you have to learn how to accept things and move on.”
When living with a disability, coping is one of the first things you learn. In order to survive, you have to learn how to accept things and move on. My sister moves into her first apartment, but it is not wheelchair-accessible; OK, I’ll get a hotel. I have to make my high school class schedule around the accessibility of classrooms; OK, I will find new classes. I cannot see a movie because the theater is not accessible; OK, I will watch a different movie. I cannot go into this bookstore because it does not have a ramp; OK, I will shop online. The aisle at the store is too small for my wheelchair; OK, I will leave. I cannot go on the school field trip because the destination is not accessible; OK, I will stay home.
If I allowed myself to be angry, I would be furious all the time. Every day I am shown a new example of inaccessibility ― physical or systemic ― and no matter how hard I try to ignore it, the ignorance around disability will always infuriate me. I should not have to cope with injustice. I have worked for years to find a role that anger can play in a healthy lifestyle.
Rage has a funny way of feeding into itself, growing bigger and stronger as you give into it. If I have a well-deserved tantrum, I find that I have lost even more control over myself than I had before, and what was perhaps supposed to liberate me has instead done just the opposite. The internal battle that I am forced to fight ultimately leads to a feeling of weakness and depression. This is a cycle that I am very familiar with, one that I have participated in too many times.
I do not want to live a life fueled by frustration and pain, but I also believe that I should not feel shunned by society for my rage. I saw my first therapist at the age of 10 to handle the aggression I felt and to have a safe space where I did not feel ashamed of my fury. I know now that I am allowed to be angry. The only way that the blazing fire within me will go away is when the injustice around me does not ignite it. I am still furious at the world and at my body for betraying me, but I have had to find a way to live with this anger.
“I fight to be seen as a person in the classroom, I write about my pain and the mistreatment I receive because of my disability and I educate myself and others on what needs to be done so that we can live in an equitable society.”
The only solution that I have personally found for this anguish is to fight. I fight to be seen as a person in the classroom, I write about my pain and the mistreatment I receive because of my disability and I educate myself and others on what needs to be done so that we can live in an equitable society. I have implicitly been doing this my whole life, advocating for my needs and explaining my disability to those around me. However, it was not until I made my first short film in 2016 about disability and sexuality that I felt the power of my rage. I had taken my anger and frustration and created a piece of art I was proud of, a film that was loud and unapologetic, that illustrated how utterly misunderstood I felt. I was met with discomfort and shy glances but I felt strong and seen.
Rebelling against the stereotype that I have conformed to for so much of my life has allowed me to live. I no longer have to hold onto these feelings of rage and let them simmer inside me, instead I embrace my fury and do something with it.
It felt as though I was taking off my costume as the role model and embracing a new position, I was getting the opportunity for the first time in my life to be my true self, anger and all. This inner awakening gave me the courage to push back against the expectations others have of me, even if that means making them uncomfortable. I look forward to the day that I am no longer held to this standard.
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