What I want to do with my life is
help kids with disabilities in countries that don't have an ADA equivalent
and I’ve actually known this since my travels in Malaysia taught me just how rare it is in so many parts of the world for anyone to conceive of a visibly disabled person living a fulfilling life. It’s a condition associated with severe poverty, deprivation, and dangerously ill health, so every day, every minute, everywhere I went, I’d get this:
“accident? accident?”
“accident? accident?”
Accident was the only way to explain a clearly non-impoverished white chick in what registered as very nice clothes walking around looking well-fed and mostly happy, who walked the way you only see people walk whose lives don’t fit this description at all. The double-accident question was so ceaseless that I actually dreamt I was sitting outside my old house in New Orleans naked, and a crowd was lined up at my door, starting at my porch and circling the block, saying simply, “accident? accident?” and failing to remark on my unclothed state. Any time I desended a staircase (we’re back in real life now, where I adhere to the practice of wearing clothes in public unless explicitly allowed to do otherwise), strangers would say, “slowly, slowly,” practically in chorus. At the time, I hated it. But I appreciate it now. It’s sweet of a crowd of people who will never know my name or ever see me again to be that genuinely concerned about me falling down stairs. (And I have, as it happens, fallen down stairs, though not since childhood. It is a supremely awful experience.)
Being such a novelty helped me understand where I want to go with this whole “wild and precious life” to quote Mary Oliver possibly being satiricial (I’ve read different interpretations) but I forgot about all that because I was too busy running determinedly from my demons and spiraling from various negative untruths about myself to do a whole lot of productive concrete thinking for a while there. And it came to my attention well, basically this morning, that if I want to take my ever-growing network of amazing disability activists and figure out how I can help kids with disabilities here or anywhere, I’ve gotta get fundamentally okay with having been one myself.
I’m pretty convincing, I assume, as someone who’s like, way okay with it, hence the name of this blog and the hilariously unflattering picture of a huge-ass blister I got on my foot after walking untold miles in Malaysia. I convince myself, most days, because I can go all righteously-raging disability activist without missing a beat when I see and hear ableism happening out there, whether “out there” is the world we’re in or the Internet we’re somehow-still-on-god-help-us-all.
But there’s a lot of shit I’m not over, and I tried my damndest yesterday to process it all in private like I’m assuming a well-adjusted person does, and I can’t. I am a performer to the extent that I am nothing else, and the fact is I can only do so much if no one’s watching. I can only do this with you all right here. Which doesn’t mean you’re obligated to keep reading, of course, but then, when you get right down to the bare bones of life, there’s comparatively little (relative to all that we do) that we are actually, objectively, obligated to do. All that said, here it is. Disability-Related Shit I Am Not Over From Childhood, but wait! Before I write it all out, let me make sure you know how cute I used to be, so as to really drive home the extent to which internalized bigotry destroys our sense of reality and vision:
So, that little girl in the photo above is about 6 years old and she’s shopping for shoes. She wants black patent leather Mary Janes because that’s what every girl she knows and respects is wearing. Black patent leather Mary Janes confirm to the world that you are A Girl. Being a girl means you are beautiful, which is the only thing it’s truly important to be. If you’re not A Girl, then you are not beautiful, and you will never be beautiful, because that, in a 6-year-old product-of-this-society’s mind, is simply and unshakably how that works.
So I try on the shoes, the black patent leather Mary Janes, the ones that will confirm that I am A Girl and therefore beautiful and therefore a worthwhile human being. I cannot wear them, because I still walk on my tip-toes as I did before my surgery and the angle of my foot cannot be properly supported in these shoes. I cry uncontrollably because I’m ugly and worthless and without hope. We have to leave the store. I never get over this, not really. Not at that primal level where there is no wound. I spend my adult life wearing sneakers with dresses that don’t match sneakers and feel quietly humilated, and it’s only later, much later, in my 30’s, that I discover Doc Martens as a means of liberating myself from the confines of The Sneaker, ironically, it turns out, because now you’ve got actual models wearing sneakers with their dresses and the world is topsy turvy and that little girl is very confused. She can respect a certain level of high-tier streetwear like the kind my personal trainer is into, but on women? Her secret is, she’ll never go for the fancy-clothes-with-sneakers look on women, no matter how lovely and balanced they look. “Pretty girls wear pretty shoes,” she whispers, and I try to tell her that we’ve gone beyond that, but she’s having none of it, she knows me too well. (My dad, for the record, had a major thing for hippie chicks and was gaga over the sundresses-and-sneakers look or long-skirts-with-sneakers look and he comforted me through many would-be crises that would have taken place every weekend were it not for his particular aesthetic appreciations. He would VERY much appreciate what fashion has become.)
Thinking back to my teenage years in New Orleans, what kept me from feeling anything like self-worth was not my disability but my uniform. De La Salle High School forces it’s then-newly-co-ed student population to wear the ugliest uniforms ever devised. The starched, boxy white shirt designed to make curves disappear flattered no one, and the grey pleated skirt, while potentially cute, had a mandated regulation length of barely-above-the-knee, ie as anti-erotic as humanly possible. (There were girls who got away with shorter skirt lengths, but I was not confident enough to even attempt to rank myself among them. My confidence, such that I had, hit on the weekends, when my skirts were so short I can’t believe my dad and I didn’t argue. I guess he understood the sartorial prison I was in during the week.)
I did own some beautiful shoes as a teenager, most notably a pair of black velvet boots that had black ribbons for laces, but my gait meant that most soles disintegrated after two solid weeks on my feet, so I had to choose my occassions for pretty shoes carefully, and even when I did, accept that all lovely footwear would die swift unceremonious deaths on my feet, which of course is why they were inferior. No one else had feet that killed shoes. The death of those boots was truly one to mourn. (Thankfully, my shoe size inexplicably rose when I was 22, so it’s not like I could’ve kept anything from prior years anyway.)
Brittany Spears recieved my ire unfairly because the school uniforms in the “Baby One More Time” video were the actually-sexy versions of what we wore, and life was already bad enough because the girls who went to Sacred Heart truly wore cute uniforms, the kind that Catholic schoolgirl fantasies are made of. They were our nightmares, those adorable navy-blue-and-green plaid skirts with elegant navy-blue sweaters, mocking us from not too far away. I didn’t feel like I was one with my female peers, even as we all suffered those uniforms together, because several of them were undeniably pretty and arguably responsible for the fact that I’m not straight, and I couldn’t be pretty, not with the gait I had, not with the shoes I had to wear, not with this thing that made me different, this thing that people would keep noticing no matter how big my boobs got or what I choose to wear (or how one thing affected the other, though the older I got the more that effect was commented on). What wrenched me a part every night was knowing I would never look like this:
What I hadn’t learned and wouldn’t for years was that no one just looks like that. I knew what makeup was — lipstick was very important to me as a teenager — but as the child of a hippie mom I didn’t know anything about makeup routines. There were women like Gwen and there were girls like me, one category of which was magical and one of which had something visibly, eternally wrong with us. That’s how I thought that worked. And I didn’t have anyone out in the wider culture explicitly telling me otherwise. Which is why, in college, when a talented actor who was older than me drunkenly told me I was sexier than other women precisely because you’d assume that someone like me wouldn’t be sexy at all, I took it as a compliment. Amazing what we’ll settle for. What sounds like appreciation when the internal insults won’t shut up.
Instagram would’ve destroyed me when I was a teenager. At least the goddesses I held aloft as impossible and life-would-be-perfect-if beauty standards were far away, living unattainable superstar lives. If I’d had to stare at similarly made-up photos of girls I went to school with, I can honest to God say I might not have survived. The only thing that kept me able to value a damn thing I had (intellect, a sense of humor, a way with words) was the understanding that underneath it all, my peers and I were united in similar struggles. If I thought my classmates had what Gwen Stefani had, I truly have no idea how I would’ve clawed my way to self-worth. If the struggle still burbles up now, what would’ve happened to me then?
I don’t have to think about it, but I occassionally do because the Wall Street Journal published a devastating exposé showing that executives at Instagram are well aware, empiraclly aware, they have the data, of what Instagram does to the self-esteem and even will to live of young girls. They don’t give a fuck, and they don’t expect you to. And it seems that most people don’t! I’ll stop that line of thought before I get misanthropic. I don’t want to lose you, if you’re still here.
The disabled body is fundamentally anti-capitalist and anti-efficiency. This latter point is, I’m convinced, why German tourists are so weird with me. The French are weird with me because I’m so visibly imperfect, but they’re weird to everyone for whom that’s the case (I have this on record now from several overweight men). Sometimes, I like walking around knowing that my body is a moving shoe-in-the-machine when it comes to capitalist notions of “productivity,” and sometimes I feel downright divine knowing that my body forces American individualists to, if not accept, at least examine the sacred concept of interdependence.
But other times, it’s exhausting knowing that I can’t actually change minds, not essentially. That’s not a very helpful mindset to hold if I actually do want to change things for children with disabilities. I suppose what I want them to understand is what I didn’t get as a kid, because I thought I could change minds, and I hated myself even more every time I failed to. I want to make them see that it doesn’t matter. That bigots are bigots are bigots are bigots and anyone who sees us in terms of our percieved “flaws” is failing at life: we don’t need their compliments, their affirmations, or even their acceptance.
But I’ve got to know that myself if I want to live the example, and if I did know that, I wouldn’t have started this newsletter, because none of those people on the street would have been able to get under my skin. I was sick of the same rants going nowhere to individual ableist people who wouldn’t listen to me, so I decided to carve out a forum for people who are awesome to listen to me instead. We don’t have to change minds to change things.
We definitely have to align our beliefs with everything we say we believe, though. And that’s a lot harder than, I think, any of us want it to be. Maybe that’s part of the point, such as there is one: we help each other realize this shit. Interdependence, and all that.