“Your disability doesn’t define you” or “You are more than your disability” are phrases that continually follow me around. My disability does define me. My hopes, fears, decisions, likes, dislikes, empathy, and shortcomings can all for the most part be tied back to my experiences as a person living in the world with a visible disability and chronic illness symptoms. Why should disability be minimized? Baked in those sentiments is the subtext that disability is a bad thing. By minimizing disability, my whole self is minimized because the presence of disability impacts so much for me. The irony is that the same people who are so sure disability doesn’t define me actually love who I am a lot. The folks who see disability as a negative are seeing me and my experiences through a lens of ableism and struggle- an easy trap that I sometimes fall into, too. Because to be clear, disabled existence is full of struggle. It takes about five minutes of browsing Where She Stands to see that I’ve been exposed to some heavy stuff: Life threatening complacency at the hands of my college, sexual rejection, traumatic amounts of social isolation… you get the picture. Nestled within a lifetime of disability, though, is a vibrant, unique upbringing and identity that I wouldn’t trade for the world. You just have to look at it with open eyes and an open heart. Social media has shown me that lots of other people with a wide variety of disabilities and chronic illnesses feel the same: #disabilitypride has been tagged in over 52,000 instagram posts, and #disabledandproud is tagged on almost 20,000 posts.
The predominantly abled spaces I inhabit are constantly telling me not to be proud. Folks express this bafflement at my ability to navigate, or to be at all optimistic, many do not share stories about disability, and some refuse to say the word ‘disability’ altogether. Juxtaposed by intense erasure, it is of course possible that the strong sense of pride myself and others exhibit is an act of defiance. While I know that having pride in something that can be a source of pain might be seen as rebellious, my pride is genuine and for myself. It is based on a sincere love for the body I have and the life I get to live. The high points of disability identity are not necessarily such lofty abstractions as “sincere love for body and life,” though. There are kickass parts of being disabled that are mundane and fun that no one talks about because for those who see hardship, joy running parallel is confusing. But life is more complex than that! I can’t speak for the other 52,000+, but this is why I am joyfully disabled.
I Don’t Sweat the Small Stuff
Because my safety is generally precarious and ableism can feel larger than life, I tend not to react to inconveniences my abled counterparts are frustrated by. This was most evident when I worked retail, and my coworkers would complain about a rude customer for the rest of the shift. I got my share of embittered patrons too, but pretty much as soon as they were out of sight, our interaction left my headspace. In the scheme of my day, that moment was so incredibly small. And my own experience of wanting to lash out at individuals taught me that when someone is unnecessarily rude because they can’t find the particular baseball bat they’re looking for, there’s usually a pile of other annoyances and injustices behind that. Annoyances and injustices that ultimately, I am not responsible for as a Cashier at Dicks Sporting Goods. Perhaps my bar is set low, but unless my life, liberty, or pursuit of happiness is at risk, you’re not going to hear me whining.
Disability (and Ignorance) is Really, Really Funny
By way of muscle tightness and misfiring neurons, my movements are full of jerks and quirks. Jerks and quirks that have catalyzed a water bottle thrown across the room, slaps in the face, and food on the floor all at the most inopportune times. Nerves around crushes and accidental caffeine overdoses alike have resulted in teeth chattering tongue twistedness that is nothing short of ridiculous. Well-intentioned misunderstandings with abled folks about my specific abilities result in hilarious oversteps to assist me, and the mixture of curiosity and ignorance has resulted in some downright ridiculous, giggle-inducing comments, and even better opportunities for rebuttal. Responses I’m personally proud of to date: “God will fix you!”/ “Why, do I have something on my face?” ; “Why do you walk like that?”/ “Mindblowing Sex”.
My Crisis Management Skills are Fire, pun intended
Because I’ve been at the center of many-a-crisis, whether that’s falling, inability to evacuate possible emergencies, navigating sudden symptoms of chronic illness, or surrounding myself with other disabled people who are also prone to crises, I’m better equipped than the average 22 year old to respond to a variety of situations that fall under the label “crisis.” I’ve been the person to take charge when a friend was dangerously intoxicated, while others sat slightly paralyzed in fear. I’ve talked many people down from panic attacks, and worked as an intensive case manager for a year, in which my job was to literally walk into someone’s life, assess the urgent situation they were at the center of, and figure it out. In my particular body in this particular world, things can go from fine to unsafe at the pace and frequency of a light switch. I’d like to think I’ve done a good job of accepting that reality, and twenty years later I’ve picked up a few tricks on how to act fast and make judgement calls I can stand by.
My Voice (and Bullshit Detector) is Strong
People seem to think I’m an activist because I enjoy it- I’m constantly being sent more advocacy tasks and disability related causes as though taking down the world’s ableism is my leisure activity of choice. It’s not. But the upside of facing oppression and being forced to advocate for myself is knowing what injustice looks and smells like. In parts of my life that have nothing to do with disability at all, I’m unafraid to share my feelings and opinions. This means I’m often the only woman to speak up in a classroom with bulldozing boys, or the person to ask the make or break question at work that others are also wondering. I have strong communication skills, intuiting how to approach different people about various topics based on circumstances. Because man, have I found myself in the middle of some fucked up circumstances. I know how people speak when they have ulterior motives. This is not to say I’m perfect or prepared to confront a problem at any time. But I know when someone is playing me, and generally know what to say to stop the games.
Disability Acts as a Douchebag Filter
Navigating space with a physically disabled person in a world that is inaccessible takes a certain patience. Bearing witness to and holding oneself accountable for ableism takes a certain maturity. And being close to a disabled person in any sense calls for a destruction of bias, because history preaches isolation. All of that said, shallow, entitled, and embittered is not the profile that’s attracted to me. If someone reacts to my body or ableism insensitively, that behavior shows itself quickly and a friendship is generally not then viable. You either sink or swim. It’s likely that if a person has a problem with the ways I live as a disabled person, other “-isms” aren’t far away. Ableism is an indicator that that person and I are not a match even outside of disability, saving me from emotional stress later on. On the flipside, the folks that are a big part of my life tend to be more critically thinking, empathetic individuals that are particularly excited about my personhood and disability identity. Our conversations are really meaningful and our bonds are long lasting.
Abled Bodies Seem Super-Human
Because my disability is congenital, my standard for what is physically ‘normal’ and what capabilities are ‘typical’ are based on, and possibly limited by, my specific experience with Cerebral Palsy. So when I see abled people do things with their bodies that I can’t, it inspires a sense of awe in me, because I can’t even conceptualize embodying what I’m seeing, even if it is an activity accepted as unremarkable among the abled majority. This is more relevant for me in so much as most of my friends are actors and dancers by way of my own involvement in the performing arts. As a result, many can do things with their bodies that are viewed as exceptional. Witnessing my friends physical accomplishments allows me to understand the human body in an even deeper way. I’ll never forget when a friend said to me that when she looked over at me during a dance showcase we were attending, she was amused by my face because she’d never seen my eyes so wide or my jaw so close to the floor. To me, what I saw on stage was nothing short of miraculous.
Part of a Built In, Worldwide Community
Re: disability informing many facets of my selfhood, disability is a cultural identity, just like that of ethnicity, religion, and sexuality. There are niche jokes, understandings, and practices shared among people with disabilities that span across differences in disability types, ages, and upbringing. When I pass another person with mobility challenges, we are likely to share a little nod of acknowledgement; a small gesture that says we out here. At that moment, our diagnoses or what brought us to that place at that time doesn’t matter. Similarly, students at my school who recognize me as a vocal individual with disabilities have gone out of their way to introduce themselves to me. Many have invisible disabilities that are objectively different from my own, but that difference is not super relevant, because they’re simply seeking another person who knows how it feels to present ‘differently’ and has to go through similar bureaucratic hurdles on campus in the day to day. As random as these introductions may seem in the moment, I do my best to make time for them, because I love knowing there are others in my vicinity that can connect to this specific and strange existence.
Meaningful Trust and Platonic Intimacy
I lean on my friends for things that abled people don’t have too. Once a person gets through the aforementioned Douchebag Filter, it takes a little longer for me to trust them with helping me with physical tasks, or to confide in them about what I face moving through the world as a disabled person. So when that trust is eventually established, the bond I share with that person is particularly strong, and there is a language between us for touch, assistance, and communication that is unique to that person and I, and enriches my time with that person on the whole.
Increased Empathy and Gratitude
Hopefully this one is self-explanatory. Because I know what it feels like to be on the receiving end of micro aggressions and prejudice, a lifetime as a marginalized person has made me particularly empathetic to struggle and marginalization on the whole. I feel I can relate to people with marginalized identities other than ability status moreso than with people who I appear to have more in common with on the surface. Disability forced me to deconstruct and reconstruct what ‘normal’ means, so I am more equipped to meet people where they are when their normal differs from my own. The result is an awesomely diverse group of chosen family and friends, because we’re connecting to one another on more substantive qualities than how we look or our age. For that and so much more, I am grateful. Because my day to day health and ability to perform is precarious, I don’t take the ‘good days’ or my capabilities- physical or otherwise- for granted. I get really excited every time I get to the top of a set of stairs, or see myself standing on equal weight in a mirror, or introduce myself to someone I don’t know, or successfully talk myself down from a trigger, because these are all things that I’ve lived without the ability to do. And all idiosyncrasies considered, I feel really lucky to have the body and mind that I do, because they allow me to do a lot of cool things!
I have even more to say! Including: employable skills, logistical perks, esoteric medical knowledge, the fact that disability brings out the good in people, aaaannnd I know who I am; my sense of identity formed earlier than average. BUT this piece is already a lot of words, so instead of expanding on all of that, I’ll wrap it up. If you want to talk specifics about what I mentioned briefly, send me a message here. When I reference the struggle of living with disabilities, it’s regarding other people’s ableism, not barriers presented by my body itself. Sometimes I dwell on the former because it takes up so much space in my life. But ableism is ultimately the doing of others. It is someone else’s energy, someone else’s time. I remind myself that when it spills over into my energy and time. But that does not diminish any of what I’ve named here. I have faith that I can reclaim the usurped energy and time with a mixture of good people, intentional fun, and a strong sense of discipline. In short: Haters can’t kill my vibe.
Today, This is Where She Stands.