About apple cider, makeup swatches, and the narratives imposed upon our bodies
My twin brother absolutely cannot tolerate apple cider. We discovered this when we were 9 and my mom carted us off to go apple-picking.
After an hour of picking and fighting over who picked the best Honey crisp, we visited the little stand at the front — adorned with apple-baked goods and an assortment of hot ciders. Ryder went for an apple cider donut (naturally, the twin in me had to get the same), and my mom ordered us both a hot cup of apple cider, a treat neither of us had tried before. After about 20 minutes (and I assume a lot of discomfort for Ryder), It became well-known in our family that my twin brother has quite the intolerance for apple cider.
It was also common knowledge in my family that I had a little left arm. Just like we knew that when October rolled around, my brother would now opt for a hot chocolate (the twin competition remained and I too, became an avid hot chocolate drinker), it was also known quite plainly that I sometimes needed help zipping up my winter coat and opening certain jars in the pantry. Throughout my childhood and within my family, my short arm was approached very matter-of-factly. It was no more emotionally charged than my brother’s cider intolerance was. My asymmetrical body was my ‘normal;’ this was my neutral way of being.
When my disability stepped into the social spotlight:
While I recognized that having a short-left arm was a bit more unique of a difference than a food intolerance, it wasn’t until I was in public school that I really began to feel limited by this difference.
Like many of us, for most of my young adult life the concept of disability was accompanied by feelings of shame or pity. When I pictured disabled people (at this time I didn’t consider myself disabled), I pictured individuals dependent on constant care, people living away their days at home, or the classroom adjacent to mine in middle school that was referred to as ‘special.’
Disability was a concept that remained largely separate from me. However, as I entered public school, began to interact in social spaces, and noticed other people's perceptions more – my neutral feelings towards my asymmetrical body began to change.
What started as noticing a few not-so-subtle glances to my left side, and a handful (ha) of hushed “Mommy, what happened to her’s?”, quickly snowballed into a powerful hyper awareness of how my body was received by others. And my god, was this awareness strong! At 12, I was Google-ing ‘long sleeve’ prom dresses, in a desperate attempt to conceal my little arm for a prom that was 5 years away! I was grasping at anything I could to hide my difference– tucking my arm behind a shoulder bag or beneath long sleeves, or nestling it as close to the side of my body as possible.
What was this fear? What was this uncomfortable, and hyper-self conscious feeling that swept over me once I entered grade school? This big sticky feeling of fear, shame and pity that I held towards others’ disabled bodies and now my own? I have now learned this to be ableism, and it shows up in many ways.
Ableism and other sticky beasts:
Ableism exists in many forms and places. It is the gaze with which we, as disabled people, are viewed. It is the assumption that our bodies are bad or inferior bodies to have. It is being labeled in social spaces as undesirable or difficult on the basis of this one attribute that has already been decided for us. It can even be the way that usually kind and well-meaning people interact with us. It is in the prayers (as if an arm can grow back if you pray enough? ) It is in the way assistive technology may sometimes market to us assuming we want to be “healed” or can “overcome” a disability.
In the past few years, navigating this world with a disability, I have just begun to grapple with the big bad sticky beast that is ableism. I have struggled with understanding it: Is this feeling a product of my body? My world? Why is it that I feel completely excluded and hyper-visible in some spaces, but not in others? How come I feel comfortable and relaxed in my body in some contexts and not in others?
Lois Keith, teacher, writer, and disability rights campaigner, hits the nail on the head with this one. She remarks, “Doing disability all day long can be an exhausting process. I don’t mean having an impairment, in my own case not being able to walk. Like most disabled people I can deal with this. I mean having to spend a significant part of each day dealing with a physical world which is historically designed to exclude me and, even more tiring, dealing with other people’s preconceptions and misconceptions about me.”
I find this incredibly liberating. While I don’t know how to fight ableism in our government, our systems, or in our healthcare (although I can point you to some pretty damn inspiring people that are doing so!), what I do know is that what is most disabling for me is often not my unique body, but is the stigma that surrounds it.
About those makeup swatches…
While I feel grateful that I’ve experienced minimal outright moments of rudeness, what I’ve really come to notice is just how BIG the little things can be. Just as the little comments and moments of insensitivity had created a BIG feeling inside of me, the little acts of thoughtfulness have also had the most profound impact.
This past fall, my friend Bella and I were browsing the makeup aisles in Ulta.
We had come in to pick up some product or another, but ended up lazily scanning the new makeup displays. We had both paused, examining the new Half Magic glitter liquid eyeshadows, displayed at the front of an aisle.
I watched as Bella unscrewed Bad Bunny! And Microcosm, tapped her finger on the pinkish-purple shimmery pigment and swatched the shadows on the back of her other hand. Rotating her wrist, we both gawked at how the light hit the shimmer.
I picked up a shadow from the display to examine, hesitating to unscrew the cap, because in my 10 + years of frequenting Ulta, swatching a makeup product has frankly just been a hassle.
This hassle, at one time, used to cause me overwhelming anxiety. In one instance, it had even resulted in a mortifying Ulta-employee-mix-up. On this one occasion, I had quickly rolled up my sleeve, attempting to covertly swatch a highlighter on my little arm’s elbow, only for an employee to accuse me of stealing the product because she hadn’t understood I was missing an arm and was tucking my arm at my side out of insecurity, not to hide a stolen item (No blame to her — I did such a good job of hiding it).
Back in the Ulta aisle, I showed Bella how difficult it was for me to swatch the shadow on my hand, joking to her (as I often do), Just another two-handed person thing… Knowing Bella and how accustomed she is to my constant stream of arm-jokes, I figured she’d laugh and we’d move on to the next aisle or to grab whatever product we came in for without a second thought. Instead she paused; looked at me, and said, Anni, that's something I hadn’t ever even THOUGHT about.
We stopped for a moment, laughing about it, musing over it, while we (she) swatched a few more shadows for us both to look at. While this was about makeup swatches, (… read that again, makeup swatches!) I was overcome by how refreshing it felt to talk about such a little thing that used to plague me so much. For her to pause, acknowledge and notice, just for that moment.
We left Ulta, I dropped Bella off at work, and by the time I got home and parked, I felt an odd amount of relief about how good it felt to be seen.
Benign neglect:
Over the summer, my friend Chris and I went to the driving range. It was my first time really golfing. We had just started to become friends, and I didn’t know him that well yet, but I knew he was athletic and that we both loved trying new things. You’ve never been golfing before? Let’s see how you can do it, he had said. We were meeting another friend– Andre – a fellow-limb-different, and exceptional golfer (if I knew more about golfing I am sure I could introduce his golfing abilities better). Two disabled people and one able-bodied person! We disabled folk were in the majority (take that ableism!). I’d happily agreed to the outing, because why not? I was sure I’d have fun with both of them and really do enjoy trying new things, but my expectations were low.
While I’m sure this came from a place of anxiety, it also came from a place of experience. I had tried a variety of bat/club sports before. Most of these I’d attempted with my brother and dad, and while I can usually keep up and try to adapt the bat/club to my asymmetrical body, I hadn’t really found much success. I already had an idea of how the day would go: we’d hangout for a bit, I’d watch the guys hit a bucket of balls, attempt to hit some of my own, have an awkward-asymmetrical swing, they'd notice & would explain to me how to position my body, my feet and how to swing the club better, I’d end up overcompensating with my right side, we’d call it a day (my right-side likely in pain while my left would get off scotch free), and I’d drive home – thinking that while golfing is fun, it just really isn’t my thing.
This isn’t at all how it went. For the purposes of this story, how good I am at golfing isn’t the point (although I’m sure you’re at the edge of your seat). We chatted with Andre for a bit, impressed with his customized clubs and his crazy good swing. Chris explained the basics to me —which club to use for what, where to place the tee, and how to position my feet. All things he knew; things he was well-versed in. But, when it came time for me to swing, the instruction, the “okay, so you should grip the club like this, and move like that…” didn’t come. Chris leaned against the fence, giving zero instruction on how I should attempt to swing the club, as if to say Go for it. Let’s see what you can do.
This not only shocked me – but angered me for a moment. Wait… what? You’re not going to help me?! You’re not going to tell me how to do it?!
When it comes to my disability, I'm so used to others poking and prodding with suggestions. So accustomed to solutions being nudged towards me, or being urged to purchase some disability dongle in an attempt to make me function in a similar way that able-bodied people do. This lack of instruction felt wholly foreign. It made me uncomfortable.
While I have no idea if this was his intention, the point is that he gave me the space – space that I don’t often feel like I get. Space to try; space to trust my body; space to fail, even.
After the initial discomfort of being left up to my own devices, I felt such relief. Relief in Chris’s acknowledgement of his able-bodiedness– and his assumption that I am truly the expert over my own body. Relief in his acknowledgement that I have surely been adapting and hacking for a long time. And that sometimes just having the moment, the space to make friends with my own unknowing is HUGE.
What does this mean? For you? For me? For disabled communities?
I am now 22, and am working to drop the hyper awareness of how others perceive me as a disabled person. In these two decades, I have pretended to be so many things (able-bodied, a hero who beat her disability!), I have hidden in so many ways. Now though, I feel so much more settled in my body – less like an inconvenient outsider-eyesore, and more like a valuable if-a-little-bit-asymmetrical-looking human.
It comes in waves, but what I think I can give a hell of a lot of credit to is the small and thoughtful moments, from people like Bella and Chris, where my disability has been acknowledged but not attempted to be fixed. The small moments that can make the world of a difference. Maybe this says something? Yes, no doubt there is a ton of BIG work to be done in the disability space. But in my experience kindly acknowledging without trying to fix the situation can go a long way. Giving space to notice, to listen. Asking good questions. Asking bad questions! Just asking at all. Including disabled people is a kindness to us all. Because listening to voices that are typically silenced brings to the table nuance, endurance, creativity, beauty, innovation and power.
Although “doing disability” all day, as Lori Keith calls it, can be exhausting, it is a little less heavy when people listen, ask questions, and are kind and thoughtful more often than not.
Oh, how those comments sting! What a fighter you are seeking and working out a more genuine way of living. Your positive outlook is ringing in my ears.
Great read! I reflected on how it might have been for a man I shared my life with for 20 years, who had half a hand…. He had a grip with half a thumb and half a palm, so there wasn’t actually much of an impact in terms of what he could do….. but I probably really underestimated how it had made him feel at times. He appeared to be a happy , confident person but looking back I realise there was anxiety too, anxiety that I might have belittled….. He didn’t talk about it that much, and never to others. He did say occasionally that he thought he might not be attractive to anyone else except me, which was a complication we could probably both have done without….... so talking about ableism is wonderful I think……. a gift to others as well as yourself….. Thank you.