Hi guys! Miggy here. So excited to have Rebekah back to share more thoughts on disability awareness and more specifically, on ableism. Rebekah was one of my all time favorite and most popular spotlightees ever--you can read her interview here. She is a phenomenal writer and even after 6 years of special needs parenting, 5 years of special needs spotlights, I was completely blown away by what she wrote below. Frankly, this post belongs in a major publication, but I'm so happy and thankful to be sharing it here. Also, this is a long post, but most definitely worth your while. Enjoy.
Let’s start here:
When I was a little girl, I believed that I was beautiful, valuable, and fully capable of contributing to the group. I made up dances, wore frilly dress-up gowns around town, and pretended I was married to the prince. I felt capable and dreamed big. The fact that I couldn’t walk – that I strapped braces to my legs and used a walker and a wheelchair – didn’t really factor into my evaluation of myself. At least, not at first. Very quickly, I began to believe different things about myself. I started to see myself as a burden on the people around me. Spending time with me cost something extra, and I wanted to spare people that high price. I started to believe I was ugly. No one would ever want to date me, let alone marry me. I began to see myself as weak and helpless. I would never be able to support myself, have a “real” job, or pay my own bills. The best I had to offer society was to encourage other people by being joyful despite my wheelchair. This was where I fit best.
So this is my question:
How on earth did this happen? Why did these ideas take root? I was never bullied or abused. In fact, I grew up in a world of kindness and generosity – one where everyone knows you’re supposed to be nice to the disabled kid. I never once heard a person describe me as a “burden” or “ugly” or “weak.” (Well, maybe once. But once? Is that really enough to highjack a person’s entire sense of self?) In fact, people often used positive words to describe me, like “joyful” and “bright” and “inspirational.” By all accounts, I should have had a hearty sense of self-worth. So, what is this?
I ask, not just because I want to understand myself, but because I know I am not the only one who has experienced this. So many of us have grown up under spirit-crushing systems– racism, sexism, classism, homophobia, size-discrimination, ableism. These structures are buried deep into our cultural history and steal from us our sense of worth and power. This act of thievery can be loud and violent, or quiet and pervasive. There are ways these oppressive systems overlap, feed off each other, mirror one another, and there are also ways they remain uniquely distinct. As a white, cis-gendered, straight woman who grew up in a middle-class family, I won’t pretend to understand most of these structures intimately. Even in my paralyzed body, I carry a world of privilege, much of which I haven’t yet begun to understand. At the same time, nearly thirty years of paralysis has prompted some thoughts on this slippery, subtle, shifty little monster called ABLEISM.
In its most boiled-down, squished together, simplified form:
Ableism is the process of favoring nondisabled bodies while discriminating those that move, see, hear, process, or look differently. The application of this idea, can morph into ten thousand shifting shapes, and for the world we live in today, it’s usually more subtle than overt cruelty. Some examples to get us started: the assumption that all those who are deaf would prefer to be hearing – the belief that walking down the aisle at your wedding is obviously preferable to moving down that aisle in a wheelchair – parents physically holding their children back as a person with a disability passes by – the assumption that a nondisabled person who chooses a partner with a disability is necessarily brave, strong, and especially good. All of these are different flashes of the same, oppressive structure. Ableism separates, isolates, assumes. It’s starved for imagination, creativity, curiosity.
An ableism metaphor to help make sense of this mess:
The concept of ableism is so deeply entwined in our culture, and, by extension, the wiring of my own self-perception, that sometimes it can be difficult for me to name. It helps me to picture ableism like an elaborate stage performance that we, as a culture, perform together. For most of us, we learn our parts as we go along. We pay attention to cues, we watch how the other characters interact with us, we see what happens when we step outside of our designated parts, and soon, we learn the precise parameters of the roles we play in this story. When you live inside of the story, it can be difficult to really see it. We begin to believe things like, “this is just how it is – this is how the world works,” forgetting that we are in charge of the stories we create. So, in the spirit of this month – our month of Disability Awareness – I want to take a step back with you – to attempt to work some of this through – to pin some of this slippery business down so we can examine it, process it, weigh it against our individual experiences, and hopefully, decide for ourselves – What is this, really?
When I pause, take a breath, get some distance, these are some of the ways I see ableism shaping the roles we play in the story:
- It is hard to see/resist something that has no name.
I am going to confess something to you: I had not heard of “ableism” until I read about it in a book a few years ago. I mean, I knew that I was uncomfortable in my own body, that people stared at me when I went out in public, that I was barred from many spaces by flights of stairs, narrow doorways, and cluttered aisles, but I internalized these experiences as evidence of my own inferiority. I was swimming in the omnipresent fumes of ableism, drinking it up through a straw, absorbing it through my skin, but still believed that the poison itself came from me. Unfortunately, I don’t think my response is surprising or rare. In general, ableism doesn’t show up in the forefront of our public conversations. In fact, when I did a Google search for “ableism” a couple of weeks ago, the first suggested search Google offered was “ableism isn’t real.” So this is where we start – not from the ground up, but from the boiling center below ground.
When we refuse to acknowledge ableism as an oppressive structure, we tell a group of people that the inequality they experience is a result of the defects located in their individual bodies and minds. It says, “Sorry you’re inferior,” as it drapes a giant, white sheet over the external barriers impeding them. Might the absence of critical conversation – the silence surrounding ableism – be one of the ways that a girl with a disability comes to believe she is a burden on the people around her without anyone speaking the word?
- Inaccessibility creates more than inconvenience.
We live in physical spaces that exclude large portions of our people. Using a wheelchair, I understand one sliver of this. There are many ways that certain bodies are barred, but when I approach a building with stairs and no ramp, I see the words “CRIPPLES NOT WELCOME” painted across the front. Does this sound extreme? To me, it feels like regular, boring life. I am positive that the owners of these spaces would be appalled if someone scrawled these words across their doors, bathroom stalls, or parking spaces. That’s not the message they are consciously sending. But that’s the power of the force that remains unnamed – as a culture, we are so slow to recognize the manifestation of ableism.
The question I’m working through here is this: How does the uninviting design of our communities shape a person’s self-perception? I mean, really, what happens in a human brain when it moves through a world that shouts “You don’t belong here!” from the rooftops and in the streets. How might this person imagine herself as a contributing employee, parent, student, artist, consumer, vendor, or citizen in the very spaces that disregard her? There isn’t one answer. Everyone experiences these spaces differently, but I’m wondering – might the design of our communities be one of the ways that a person with a disability comes to believe she doesn’t fit without anyone speaking the word?
- Kindness is complicated.
In my experience, the vast majority of strangers I interact with are recklessly kind – racing to open a door for me, offering to help me put my chair together, making jokes about how I need a speeding ticket *wink, wink*. People want to reach out, connect, help. What a beautiful thing! The reverse of this – a world where no one offers to help with anything, ever – sounds lonely. And yet, these very gestures of kindness often leave me feeling so small. How do I explain this? Maybe this story will help: Shortly after I learned to drive a car by myself, I took a trip to the book store. I felt powerful and independent as I pushed myself up the curb-cut and toward the entrance. An older couple opened the first set of doors for me, so, by the time I got to the second set of doors, I was ahead of them. This time, I opened the door for them. As they passed through the door I held open, I heard the woman say to her husband, “She’s a proud little thing, isn’t she?” I had stepped outside the boundaries of my assigned role, and it stung like a slice through my belly.
I long for the freedom to play a different role in the story. Maybe the people I meet would like that, too? But these parts haven’t been written into most of our scripts yet, and improv doesn’t always go well, especially if both parties aren’t on the same page. When I encounter strangers who insist on helping me, I feel forced to participate in a storyline that hinges on my dependency. Whether it is true or not, accepting help from strangers often feels like supporting a suffocating narrative of disability – one in which the crippled lady is always the recipient of aid from the nondisabled heroes on stage.
Does this sound like an unfair setup? I mean, forty-five seconds ago, I was telling you how uninviting and inaccessible many built environments are for people with disabilities, and now I’m telling you it doesn’t feel great when someone tries to help? It’s slippery, right? I hear it in my words, even as I type them. But here’s the question mark – what does it do to a person’s sense of power and worth to receive constant offers for assistance whenever they enter a public space? What would we begin to think of ourselves, for example, if every time we walked down the street, people approached us with a look of tender concern, a couple of bucks, and an offer to use their shower? There’s something nice about extending a hand, certainly, but there’s also something degrading about receiving it without request, no? Over and over and over again, unsolicited offers of aid send a very powerful message: when people look at you, they see helplessness.
It leaves me wondering – might these relentless acts of kindness be one of the ways that a person with a disability comes to believe she is powerless without anyone speaking the word?
- And while we’re talking about being nice, completely ignoring a person’s disability isn’t.
During a first date with a guy I had met online, I asked him, “What do you think about the fact that I use a wheelchair?” He answered quickly. “It’s not like it defines you.” Without pause, he said the words his script had taught him to be the kindest and most generous for this conversation. Instead of making me feel valued, though, it made me feel whitewashed, sanitized, invisible. I wanted to ask, “Am I only acceptable to you if we ignore the fact that I can’t walk?” This doesn’t work. My body is inextricably stitched into the person I am. When people say things like, “You’re too pretty to be in a wheelchair,” or “All I see when I look at you is a beautiful woman. I don’t even notice your wheelchair,” I think they believe they’re progressing beyond that ableist script. Instead, it folds directly back into the oppressive storyline that forbids beauty in the defect itself.
I understand how it happens – if you live in a community where disability is framed as tragic, sad, and inferior, then claiming not to see that so-called defect feels like a nice thing to say. Deep within our cultural understanding of what it means to be a human with a body, we position disability below ability and at odds with health, beauty, wholeness, and happiness. But I don’t need (or want!) my paralyzed legs to be erased in order to be seen as able, healthy, beautiful, whole, or happy.
Might this impulse to erase disability out of “kindness” be one of the ways that a person with a disabled body comes to believe she is inherently ugly without anyone speaking the word?
- Good grief, is any form of kindness good enough for this woman?!
When I remember the acts of kindness that stir me with genuine gratitude, I don’t think about people offering to hold a door or carry a bag for me. I think of the Kansas City organization that builds ramps for people who need access to their homes and my brother who connected me with them – my friend who used her connections with a medical supplies clinic to advocate for some of my wheelchair needs – the owners of a local café who installed a new mirror in their bathroom so I can actually see my face when I wash my hands in their sink.
When I imagine the most effective, long-lasting, empowering ways to offer help to a person with a disability, I think of all the people across my city who run businesses, manage grocery stores and restaurants, teach classes, drive buses, design buildings, work in hospitals and schools and churches, raise children, and on and on and on. What would it look like for these people to hire a person with a disability? To make their restaurant more accessible? To create a classroom space that invites physical and mental diversity? To talk with their kids about difference? Instead of entering the personal space of a person with a disability, what would it look like for all of us to make our corners of the world more accessible and inviting to those same people? When our spaces are made accessible, we are no longer forced into forever relying on the strangers around us. And, yes, I think there is always something miraculous and beautiful about the willingness to help out when someone is stretched thin. This is fundamentally different, however, than fostering a culture that shapes an entire people-group around the experience of helplessness and dependency.
In our ableist play metaphor, the occasional helpful hand does very little to expand the boundaries of the confining “disabled person” role. It may allow the helped person to conserve some energy, but it doesn’t change their actual position in the story. Becoming an advocate to change the set-designs, though? Arguing for a new script? Instead of minor and fleeting tweaks to a moment within the play, these are the kinds of acts that create fundamental changes to the story itself.
What I’m trying to get at here:
What I’m circling around with all of these words layered on words – is this: Our work with “Disability Awareness” and “Disability Rights” can only go so far before we have to address the deep roots of ableism harvested in our culture. The majority of our communities are well-trained in “political correctness,” even as they are steeped in ableist thinking. The result of this confusing combination is a culture that says all the “right” things, while continuing to practice the marginalization of an entire people-group. I know this, because the little girl version of me grew up in a world that advertised itself as inclusive, tolerant, and aware, and I still grew into a self-loathing adult who saw herself as incapable and undesirable.
That is not to say that we haven’t made meaningful progress in our pursuit of disability rights. There is progress worth celebrating! Last year, for example, we paused in gratitude for the twenty-fifth anniversary of the ADA – a change in our legal system that brought tangible benefits to the lives of people with disabilities in the US. There are powerful advocates doing work, bit by bit, to contribute richer representation in media, create more accessible spaces in public and private sectors, prompt changes in our education and workforce systems. Nor do I intend to suggest that we shouldn’t continue to fight for more of our disability rights. More handicapped spaces, please! More interpreters, more employment programs, more affordable, accessible housing! All of this is gorgeous, powerful stuff. But somehow pursuing these legislative changes feels simpler or more straight-forward than undoing the tightly intertwined tenants of ableism. Ableism itself is the source of the problem – the reason we have to go in with our sledgehammers and perform damage control on our established architecture, education, and employment structures.
Releasing our grip on the script long enough to make eye-contact:
As we go about fixing the tangible evidence of ableism, how do we dismantle ableism itself? It’s intimidating, isn’t it? To step into this mess? I think there must be many answers to this question. There has to be, right? To match the complexity? But from where I sit, I think this is the moment when we put down our scripts for just a second, look in each other’s faces, and listen.
And when I say listen, I don’t mean approaching a stranger in the parking lot, figurative clipboard in hand, with a list of questions designed to make them explain their disability to you. “What’d you do to yourself?” “What happened to you?” When I suggest listening, I imagine a planet where people with disabilities are allowed to tell the world who they are and what they need, instead of the other way around. I imagine someone pausing long enough to see my strength before they jump at the sight of my wheelchair. I imagine sharing my experiences with ableism without someone telling me why I shouldn’t be bothered by them. I imagine more stories that include disability. And not just more in volume, but more variety – we don’t need more stories about the Tragedy or the Inspiration. I imagine my younger self, making up dances in my dress-up clothes. What would have happened if my culture – my community – had rallied around my vision of myself and listened?
Because that’s one of the most defining characteristics of ableism, isn’t it? (And maybe most of these oppressive systems we experience as people?) Ableism doesn’t listen. It assumes, erases, ignores, pushes away. It takes an entire group of people loosely identified by one characteristic and blurs a thousand individual faces into one giant category of “other.”
To begin the work of undoing our ableist systems – to build a community on awareness, respect, and care – we create space for people. We forget ourselves long enough that we don’t feel defensive during someone else’s story. We let these new narratives fill us up and change the way we see what a human life can be. We take a gulp and recognize that, even as we strive for insight, we don’t fully understand yet.
As we engage in more and more conversations about ableism (and let’s do that, yeah? let’s create so many new conversations about ableism that Google replaces the “ableism isn’t real” search with something new and true and awesome, like “ableism sucks – let’s knock it down, burn it to the ground, and build a sunflower and mint garden in its place”), let’s not forget the depth and breadth of the work we have ahead of us. As a culture, we’ve spent ages performing a very old, very established script. Can we be both patient and vigilant, practical and imaginative, kind and relentless, as we set to work to write an entirely different story?