The In-Between

This past month was Disability Pride month. It was something I had never heard of until the end of June, and it was something I immediately was confused about because my first thought was that it was a disability-specific month of celebrating and supporting LGBTQIA+ rights. I couldn’t understand why that would ever be separate from national Pride.

I quickly learned that Disability Pride is a celebration of our differences, a recognition of our challenges, a way to raise awareness among the general population, an opportunity to reach out to and collaborate with our allies to achieve real change, and for many…to wholly embrace and accept our disabilities or limitations after a mourning period. Disability Pride started out as a Disability Day in Boston, circa 1990, fifteen years later it was held as a parade in Chicago, and from there it gained more national attention when in 2019, a Disability Pride Flag was designed by a disabled artist by the name of Ann Magill.

So, here we are at the end of a month-long celebration of Disability Pride. A concept, idea, and call to the largest minority in the world to gather under one banner.

I have struggled with this all month. Within that struggle I find myself, once again, in the position of saying the thing that you’re not supposed to say as a member of a major-minority group:

I don’t have Disability Pride.

I understand it. I get it. I believe 100% that it is necessary and helpful for thousands of people. But it doesn’t work for me. It is my theory that I am not alone in my humble opinions or personal struggle with embracing this leg of the disability movement. Clearly what I am saying isn’t openly talked about, and so I’m putting myself out on a cold lonely limb to speak for myself and the unspoken Others who also may not be on the bandwagon. I feel as though an echo-chamber has developed within the disability community that leaves out the broad spectrum of how people living well with disability feel about disability.

I was born at a time when doctors were still trying to figure out how to manage and treat Spina Bifida. Legend has it that surgeons argued over my body on the O.R. table about exactly what to do with me. The argument? Whether or not to intentionally break my back to save me and set the course for the rest of my life, or do nothing extreme and see how the diagnosis played out. The back-breaker won. It is likely that because of his decision, I am here able to do the things I do, and that I do not have a shunt. I came along right as equal access to education was enacted, civil rights were getting hammered out, medical research was getting more innovative, and people were beginning to be more intentional and think futuristically about people with disabilities. That was just starting.

So, when I hear about disability pride, challenges to ableism, collaboration with allies, a full acceptance of your disability, I totally struggle to find where I fit in, because, despite all of the obvious reasons….Spina Bifida, wheelchair, height, limitations, constant adapting to the world around me as naturally as breathing…I don’t actually see my disability as being my primary ID; some liken that to ableism.

Do I deny I have a disability? No. It’s pretty damn clear that I have one. Do I think my disability will magically disappear with enough prayer? Technically…errr, ummmm….at one time that was actually a full-time focus of mine based on extremely confusing religious teachings in my childhood by very misguided name-it-claim-it preachers and over-zealous worshippers that wanted to see a modern day miracle. Pretty damaging stuff conveyed to an impressionable kid when it is hell and damnation taught and instilled like a religious beer back — we’ll get back to that later.

Do I get frustrated that there are limitations placed on me because of disability? Yes, all the time. It doesn’t seem to matter that “I was born this way,” or that “it’s all I’ve ever known.” There are times that I see a flight of steps and I want to run up and down them like I am training during football camp hell week, and I feel it so deeply it is a physical ache. But those frustrations are not constant. They are rare, and they do not make me sad. I frame them into the same space as any non-disabled person would yearn to have Olympic abilities. It is simply human nature to want more, and be dissatisfied with some aspect of our cumbersome physical selves. Some people daydream of riding the sky for a Michael Jordan slam-dunk, but they can’t and they never will. There’s a whole scene in Sex and the City where the girls all share their body shames (except Samantha). They quip over Chinese take-away, “Trade you my thighs for your boobs!” “Trade you my ba-dunk-a-dunk for your cheekbones!”…everyone is seeking their ideal based on their own mental picture and unattainable physical standards.

I have never felt like I completely fit in with the disability community – maybe its because I grew up knowing virtually no one else with a disability. Learning there was an actual disability community when I went away to college was eye-opening. I was introduced to the disability community and a whole new language. There was adaptive sports, colorful wheelchairs, and a mix of attitudes that both impressed me and baffled me. There were many people that thought like I did (and well beyond) in terms of independence, and there were some that were incredibly immature and had never been away from home before. The learning curve was steep for all of us. I made friendships back in the early 90’s that are an important part of my life still today. While I identified with many people, and while I was suddenly immersed in a social scene where others were having some of the same experiences I was, I would have to say it did not define my collegiate experience, socially.

I didn’t feel like I fit in. In fact, quite the opposite, which was impactful. There were often nasty messages written on my message board on my door, and more left on my voicemail from girls a few doors down in the dorm for women with disabilities. I was called Super Crip. Bitch. Faker. Wannabe. I would roll by an open dorm room door and after I passed a voice from within would loudly say, “Bitch doesn’t even realize she’s a crip!” and the laughter would begin. It was confusing and painful. Because on the other side of that experience, there were also things I couldn’t do with my non-disabled friends. Yet, I was far more embraced by them than by the group I was told was my community.

I was in the In-Between.

That is where I sit on the spectrum.

From my perspective, I have self pride in whatever I do, whatever I attempt to do, and in my human accomplishments. I measure myself on a human scale as a woman who happens to live well with a disability, and my hunch tells me that I’m not alone in that approach. It seems to me that this way of thinking is getting pushed further out of the conversation and it is quickly aligned with abelist thinking instead of seeing it as inclusion and integration.

I don’t embrace the disability pride flag, as much as I appreciate its meaning and intention. There’s been quite enough flag waving and misplaced symbolism these last few years that gets too easily contorted, symbolically highjacked, and literally used to beat on one another. Enough grouping and pairing off to the extremes when most of us live in the middle. Enough already.

And for the record, I don’t fully accept my disability, textbook. I accept who I am as a person, and though to others my disability may seem pretty damn central to my identity, it isn’t. I accept that I have one. I don’t accept its limitations. I view my disability and limitations for now as they are for now. I accept disability insofar as exploring where I can safely push it beyond what it defines itself to be — not in an ableism sense or preference for a body type — but in the sense that I know had I listened to people who tried to tell me what I could and could not do, I would have gotten nowhere, and I would have confirmed stereotypical statistics regarding people with disabilities. I’m not having it.

I see myself as a soul, a being, an energy that has ideas, thoughts, dreams, and insights that live well beyond the physical realm. The mind is unlimited. The body (for everyone) is limited on an extremely broad scale. I see myself as someone who is breaking down barriers and public perception simply by being me – because the “public is politic.” Being in the world, being alive and functioning within it at any capacity, that is barrier breaking by its own right by every human being. It holds hands with civil rights and it is beholden to the pioneers that came before representing every group imaginable.

I don’t have disability pride because I don’t have group-think. I don’t like to focus on one aspect of myself to the point of circling back around to reconstructing barriers with rhetoric. Does organization of a concept or idea into a group create more barriers? I think it does, whether it is radical feminism or radical…anything. Does disability pride bring us together or create an extreme where there should really be a swath of gray area? Does this act of organization gathering under a flag, a day, a month, actually create an echo-chamber where we decide what language we use amongst ourselves, while potentially being out of touch with the rest of the world? In my opinion, yes…more and more.

I do not disregard or dismiss the pioneers of the disability movement. Quite the opposite: I applaud them, thank them, honor them, and revere them as I do the pioneering women of the feminist movement. Without them we would have no language. The ADA would not exist. Human warehousing would not have ended. I would not be blogging about any of this. I get that. But not everything about me is about disability any more than it is about gender. It is a constant, but it isn’t a stand alone identity.

Referring back to the religious impact that I experienced regarding disability (which has influenced my perspective in a massive way), it wasn’t just misguided leaders and worshippers seeking a modern day miracle, it was also messaging about disability and God’s role in it. This is the part where I refute what I was told when miracles didn’t happen, or what believers felt they had to embrace in order to understand and reason out why disability and illness exists. These are my rebuttals to flawed spiritual reasoning:

I do not believe that God calls certain individuals to have disabilities to be closer to Him, teach them a life lesson, pay for karmic debt, or teach their loved ones the love of God. I don’t believe that people with disabilities are angels on earth; we’re not messengers – what an awful role to have bestowed on your head! Who chooses which of us are born disabled or acquire a disability for these lessons and love calls “so others may learn and cleave unto Me?” If the consensus answer is God and/or God’s will, that doesn’t sound very benevolent or fair. It sounds like etheric entertainment in the game of life meant to keep people quiet and accepting. It sounds like a very group-oriented human explanation, which is extraordinarily fallible. I don’t believe we choose to be born with or acquire a disability, either. Not to learn a life lesson. And not to inspire others.

I believe in science. I believe that within the first six weeks of pregnancy, something biologically went wrong in my early development, and I was born with Spina Bifida to no fault of anyone, and no credit to the karmic or angelic. I believe that accidents happen. Paths cross, drunk drivers are assholes, people serve their country at tremendous risk, and sports injuries are very real. Physics. Gravity, force, height, impact. Not God calling you to love him more via the only language we’re taught that humans understand…suffering. Accidents happen and we work with what we are given. The only true disability is public perception, physical idealism, lack of access, and deep-seated stigmatism born in the time well before Christ.

That’s it.

I am not here because of faith. I am here because surgeons argued their craft in the surgical theatre and the right guy won. I am not here to teach spiritual or moral lessons — and I am certainly not here to provide you a Jesus-era modern miracle. I am here because of biology. I am not my disability. I am the culmination of over 4,094 ancestors over 400 years pushing their way through the centuries via science, technology, and evolution to be here without diluting myself down to one single aspect of my being.

It isn’t flowery, it may seem unemotional, and it zaps the faith right out of the equation…but it is how I have learned to cope with my circumstances and early experiences. It is how I embrace self-love, it is how I view my humanity in its entirety. I simply don’t want it categorized under one banner, community, minority, group, faith, ethnicity, nation, or region.

Seek more. Ask for more. Strive for more. Be more than any singular or plural set of limitations, definitions, or community.

There, you’ll find your pride.


“In order to be born you need 2 parents, 4 grandparents, 8 great-grandparents, 16 second great-grandparents, 32 third great-grandparents, 64 fourth great-grandparents, 128 fifth great-grandparents, 256 sixth great-grandparents, 512 seventh great-grandparents, 1, 024 eighth great-grandparents, 2,048 ninth great-grandparents. For you to be born today from 12 previous generations, you needed a total of 4,094 ancestors from over 400 years. How many struggles, battles, difficulties, happiness, and love stories and expressions of hope for the future did your ancestors have to undergo for you to exist in this present moment? ~ Unknown

2 Replies to “The In-Between”

  1. I love the voice, perspective, and universality of your writing!!! It is soothing, eye opening, and offers an amazing charcuterie of ideas laid out perfectly for deep discussions. You are the Virginia Woolf of the 21st century adding into the conversation the perspective (as you have notably stated) the largest minority group in the world.
    My favorite quote from this article is, “ The only true disability is public perception, physical idealism, lack of access, and deep-seated stigmatism born in the time well before Christ.”
    I can’t wait to follow discussions of equally enlightened perspectives adding to the uniquenesses of being Human!
    Thank you, thank you, thank you.

    Liked by 1 person

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