Other People's Control
and the terror of freedom
We all carry narratives in our bodies, and thankfully, some of them are fun. Narratives about redheads, for example, involve tempestuous spirits and nymphomania and witchcraft, I’ll call that trifecta fun. But most of them are not fun, and that — to put it broadly — is where a lot of “issues” come from.
I’ve heard a lot of heartening stories about disabled people who are not just athletic but EXTREME in their athleticism, doing hardcore climbs without legs or other feats of invigorating madness that, in the end, they always credit to their families, who taught them that their bodies were limitless, and fuck anyone who said otherwise, they could do anything, be anything.
No one in my family ever said, “You’re always be a shriveled up piece of hopelessness so sit down and write, it’s all your good for,” because, in my personal experience, no one ever actually says the cruelist things we “grow up” to believe about ourselves. But this much is true: as twentysomethings in the early 1980’s, my parents were terrified of the limits they saw on my body. They basically had waking nightmares of me falling everywhere I went. For all that we understood about disability and cultural narratives and agency, I might has well been born in the Elizabethan era and deemed cursed, a tiny, squalling embodiment of God’s wrath. Thankfully, by 1983 we’d come along way since then, but the Americans with Disabilities Act had yet to be passed. And when it was, it was for the benefit of veterans. It’s the only time anyone with the last name of Bush did anything I have reason to be thankful for.
But back to what my family always knew I could do, which is sit in a room and spool sentences. I was doing that with dilligent intent from a very early age, enamored with the sense of possibility soft-glowing a deep ancient-past amber, as the clunky, limited computers of my childhood did. In elementary school, everyone else looked forward to PE and Recess. I looked forward to Computer class (that. that was the name of the class) and specifically the days when our elderly teacher, Mrs. Tapscott, would instruct us to use Fredwriter, a word-proscessing program on which, for the most glorious period of the school day, we could write whatever we wanted. My stories were meandering and epic, because I never wanted to stop writing. It was the one thing I always got praise for, the one thing I never felt I struggled with (which, obviously, would change).
With the help of my personal trainer I’ve come to see struggle as a motivator. Yesterday, when I felt like I was willing my muscles to do the impossible and he said, “Go until it burns, and then go until you can’t do it anymore, and then go past that.” Yeah, that’s how to live. But he taught me that. My family didn’t. My family has always been deathly afraid of struggle, or, maybe it’s more charitable to say afraid of me struggling. They never understood that any strain or pain I experience could be just like when it happens for you. I think they truly believed that disabled pain was especially hellish, or that if a disabled person falls (even if they don’t have any bone issues), it would reverberate like our own personal earthquake and we might never recover. When I get angry about this, as, I’ll admit, I often do, I remember again how young my parents were. They weren’t “too young” in the conventional sense, but they were younger than I would’ve ever wanted to be (as evidenced by the fact that I’m now over a decade than they were when I was born and I’ve never had children or tried). They were trying to empahtize with a circumstance they knew they could never know, and there was no global Internet community of parents they could talk to or wild TV spots about hardcore disabled athletes. They were trying. But they didn’t acknowledge their own struggle as a motivator to try differently. (Neither of them, in all fairness, had a personal trainer.)
But living out an unquestioned narrative about how my purpose in life was to be strapped to a keyboard being eloquent with no one else around is how I ended up essentially forced to write a lot of things that weren’t mine so that certain members of my family who couldn’t write very well could get things they wanted. I grew up with a distorted notion of what loyalty from the Midwestern side, the side which, unlike my people in New Orleans, fought tooth and nail against acknowledging their crazy, against ever talking about any dysfuction. (In New Orleans we constantly talk about our family’s craziness, at high volume, often punctuated with surprisingly dark humor from the oldest people present.)
Everything in my body fought against the supposed obligations I had to covertly use my powers for other people’s gain, but I wasn’t allowed to speak up against this, because you don’t speak up against Midwesterners. That makes you mean! And Midwesterners are nice! (Southerners, you see, are gossipy and viscious, so it’s understood that everyone says what they want. It won’t be pretty, but it’ll be memorable, and in the best circumstances it really will turn humorous if you stick around, and in that theatricality there’s room for healing. I’ve seen it.)
Now when I say “trapped in a basement,” that sounds horrorish, right, and I don’t mean there were literal chains that kept me in the basement, but thinking back, I’d have maybe preferred those to my mother’s silent anger, the rage she showed if I had any emotions other than what amounted to gratitude that I could “help out.” It’s not really helping if you don’t have the option not to. This basement, I’ll add, was not a cozy wood-paneled type of place. It was a searing, flourecent room that smelled improbably like grape bubblegum. It had no windows, no relief from its harsh hospital light. It was the worst place to write. But it was where the desktop computer was, and it was my (unpaid) job.
Of course, this dynamic between my mother and me was not, itself, the product of disability. This was simply the most on-topic manifestation of some deeper, darker shit. But the fact is, it’s socially acceptable to exert control over a disabled body in a way that it’s understood not to be acceptable for anyone else. I’ve heard infuriating stories of strangers pushing wheelchairs, and I’ve talked elsewhere about how freely certain old white dudes feel to grab my arm without a word.
Growing up like this gave me a weird relationship to agency. Obviously I want it, don’t we all? But I also fear it. It doesn’t feel safe, because for too many years, it wasn’t. Personal agency necessetates the risk that you’ll go against what someone else wants you to do, and the way I grew up, I couldn’t do that. I can now, of course, but those fears die hard. If I don’t want do what you want me to do you’ll 1.) scream at me 2.) make me feel worthless or, worst of all 3.) abandon me. I’m getting to the bottom of these narratives that do no good for anyone, but it’s slow going for a lot of reasons, one of them being, everyone has wants, and all wants we’ve got are going to go against someone. Takes a lot of neurological resturcturing to say, “and that’s okay.”
Off and on, I’ve encountered physically disabled people who, as I see it, make life remarkably difficult for themselves by insisting on lack of help with anything. They move slowly, often painfully, to make sure that, for example, they’re the ones opening the door or carrying the drink, and I watch them thinking, “Why not just ask someone to do that for you?”
I’m glad I’ve got a balanced relationship to assistance and interdependence when it comes to that sort of thing, but now that I’m being more honest with myself than is remotely enjoyable, I understand their extremeism. There is absolutely nothing worse than being convinced that you are helpless, that you own body renders you helpless, that if anyone walked away, you couldn’t survive.
I don’t know that I’ve ever asked you to travel down a road like this one with me, so I’m not sure how to conclude here. The more self-consciousnesses I leave behind, the more I’m aware that a lot of people render themselves needlessly helpless according to narratives they haven’t examined or can’t imagine living without. By the same token, everyone has everyday actions that are easier or more efficient with a little help, and that’s as it should be. Maybe there’s actually something fortunate about these narratives staring me — and you — in the face the way they do. I don’t forget I have these narratives to battle because the world out there forces me to remember. But someone who’s keeping themselves back for reasons no one can see, well, that’s it’s own struggle. And I don’t imagine that, on the whole, it’s any easier than this one. The whole thing requires that we go until it burns, and then keep going until we can’t, and then go past that.
