When I walk the uncontrollable body there is no joy unless I walk alone for the body alone is not a public body and the body with other bodies is no longer private
Stillness is better / stillness is the most controllable for all factors under all circumstances / for stillness is breathable and forgettable and the body may be forgotten without reason to remember
I am always with spina bifida but in private I can hide and I can disappear
My mom refused to call me disabled or to let me call myself disabled / there is good intention here / to empower and take away limits / to refuse pity and erase difference / to equalize all bodies and uphold the humanness of every body
But there are shadows here too / a deep submemory reaction and revulsion / a desire to fix imperfection and eradicate inconsistencies and disruptions of pattern / to solve problems of deviation
It has been three weeks and the body is still menstruating / the body's cycle has always been irregular and therefore uncontrollable / the body has often gone several months without shedding the uterine lining but never has it shed for so long
I drink mugwort tea to remind the body when it's time to shed / I massage the belly to stimulate the uterus into action / I masturbate to release the body from itself / but I don't know what to drink or touch to tell the body that it's time to stop
I say to the body this is a normal function that you're supposed to do yourself / but so far the body resists the normal things and says nothing back that is not more blood
Do you understand that spina bifida is always a disability / disability: a form of impairment which limits the ability to live within the expectations and parameters of normalcy / spina bifida: a congenital disability with multiple possible impairments
Spina bifida is always a disability / but whoever said that disability must by definition be corrected was wrong / I tell you that liberation comes when we recognize the body of disability as inherently a good body / still deserving of the full state of humanness and worthy of adoration
I would like to be friends with the body but I don’t know how / I am afraid of the body's potentials and signifiers / of pregnancy and non-pregnancy / of being a parent and never a parent / I am afraid of my own blood and how I bleed
The period is an example of the cyclical movements of the body / the ways in which the body regulates itself / but when the body is irregular—meaning outside of regulation—it is cause for great concern and an indication that something is wrong I should see a doctor but I am afraid of the doctor / for the doctor has always had the power to tell you how you are wrong and how you are dying / I do not want to hear how I am dying / I do not want to be the body / I keep this irregularity private and I dwell in the shame for it is a shame of the uncontrollable body
When I walk the uncontrollable body it is the public showing of my fat body and my body of spina bifida together / the fat and disabled body is a misbehaving and uncontrollable body and therefore offensive to the public / reviled and disgusting and rejected
When I walk the uncontrollable body there is an acute anxiety that the body will misbehave / the body is already bad—fat and with spina bifida—and the world is waiting to punish and shame the bad body for bad and good bodies exist only in public / in private the body may be its own ungovernable animal at rest and there is no shame
I have always had and will always have spina bifida / but in my childhood I lived in the poison dwelling of perfection / I punished the imperfections of spina bifida by refusing its existence and its limits on the body / it was only that I didn't try hard enough / that I failed in the body / that spina bifida was the enduring failure of the body to be a good body
If you raced horses in the nineteenth century you would sometimes load your horse with weights and this was called a handicap and the goal was for each horse to finish the race in a dead heat / neck and neck / the best horse—the strongest the fastest horse—would carry the heaviest weights and succeed the disadvantage of its burden / you won the bet if you could guess which horse could overcome its handicap
In the seventeenth century we find the root of handicap in the hand-in-cap barter game / a game in which two people pull objects from their pockets / the value of the objects judged by a third person / the forfeit determined by whether or not everyone agrees on the value
Handicap became a metaphor for disability in the twentieth century / the closest anyone had gotten to contextualizing disability and locating it in the world / but it was never quite right for a person is not a metaphor / handicap: a burden of the body or a person who carries a heavier load
In childhood we tried to equalize our bodies / we tried to determine our right value / we reached into our pockets and pulled forth the object of our personness / is it worth this much or this much / is it worth as much as yours / I never seemed to have as much personness / I lost every time
In walking the uncontrollable body there are rules for keeping the body in check:
go to the bathroom before you leave any place with a bathroom for there may or may not be a bathroom anywhere you go in the world / go to the bathroom again and maybe even again for you can never be too sure / do not make eye contact but if you do you must smile and be polite and behaved to show that you are in control of your uncontrollable body / remember to breathe evenly and steadily and do not allow yourself to be observably out of breath and if you cannot be in breath just stop breathing / do not slow down for the weakest animals are picked off first / do not ever stop / do not sweat for sweat is a sign of exertion and of trying too hard and the body should be effortless and easy / keep going / keep going / there is so much danger when exposed in public / at any moment a shame or humiliation or some other badness / at any moment you may lose control of the uncontrollable body / even when the body begs you to stop / keep going
The thing about the uncontrollable body is that it will break every rule you set against it for the thing about the uncontrollable body is that it is uncontrollable
What if a person is not a horse or like a horse nor a game or like a game / what if a person is a human and only a human / what if the game and the race and the competition between bodies is a lie / what if I don't play this kind of game with you anymore
In my body of spina bifida I am asking you to name me as I am
To let a thing be what it is / to call a thing by its rightful name / to say disability is a reclaiming of the body / an action of the body and a disruption to so-called normal / to say disability is to claim agency in our personhood / to disassemble the machine of normal
When walking the uncontrollable body any movement and especially the movement of walking will eventually trigger the muscles of the bladder in such a way that the uncontrollable body will feel the urge to urinate whether or not there is urine / no matter how often the bathroom was used in private / in the uncontrollable body there is no telling what is a true or false urge and so the panic is the same and so is the shame
The uncontrollable body is also the incontinent body for continence itself is a holding back of the body / the incontinent body knows what it means to control but refuses to enact the habits of control / the uncontrollable body is a body that is out of control / the uncontrollable body carries with it the implication of willful and knowing and intentional uncontrol / this is also a lie
When I'm on my period I use the same pad for blood as I do every other day for incontinence / there is no disruption to the rules of my routine / the pad holds my blood and my urine at the same time and there is no difference
Once I tried to separate the modes of absorption / I bought a menstrual cup to make one part of the body keep the normal rules of having a body / I tried to live inside normal but I didn't stay there long / though I did like the cup for it felt godly to control the blood collection of the body / I would water down the blood and feed it to my plants / their greens were the most alive and in the nighttime I could feel them leaning towards me / I could feel them feeling me and knowing the body in the way that a body can only be known if it is inhabited / we shared a communion of body until I lost the menstrual cup and never bothered to replace it / for the act of separating blood from urine was a redundancy and a lie and I did not belong there
We inherit our bodies and the memories of body / my mom did not believe in her enoughness / my mom blamed herself for my body for she believed that spina bifida was her fault and to rectify her fault she did what she could to take away the disability / what my mom was ashamed of and what I am also ashamed of is that we understand enoughness in terms of how we are or are not normal / that the body is a continual failure of normal / my mom still believes in the failures of herself and I also hold this belief about the failures of my own body / my body of disability and my body of spina bifida
Something we have inherited is how to exist inside of normal / how to disappear so that we might survive
Dis: apart asunder away a force of reversal / disability is to be parted from ability / to be away from ability / to be forever divided from ability
We inherited rules so that we might attain ability and perform normal and inhabit personness and be unburdened and not a burden
Consider always the rules for the uncontrollable body / such as what to eat and what not to eat and when / such as exercise / such as bathrooms and schedules and planning for access / such as how to avoid infections of the bladder and the kidneys / such as catheters / such as medications / such as pads / such as layers of clothes to hide the shapes and the leakage of the body / such as whether or not everything that is needed can be brought into the world when the uncontrollable body goes into the world / such as what can be left behind and what must be carried / such as what can be forgotten and what must never be forgotten
The rules try to predict for the uncontrollable body / to diminish the misbehaving body / to hide the badness of the bad body / to pretend to be a good body among good bodies / to be a public body in control / the body may not forget that it must control for the public body even when it is not public
I may say body I want us to be friends / but this is not what the body knows / it only knows how I am afraid of it / how I revile and dread it
If I go to the doctor in the malfunctioning body the doctor will tell me the ways in which I am failing to maintain the body / I will feel this failure in addition to the inherent failures of spina bifida / I do not want to feel my monstrosities
I keep imagining a future when the body is a regular body and I can take it to the doctor and the doctor will admire how behaved the body is / how good it is at being a body / but so far I keep waking up to blood stains on my sheets / when I stand up from the toilet I think please let me not see blood but so far there is always blood / I lay in bed and think please body stop bleeding but my body keeps bleeding
Every day I think today is the day I will find liberation in the body / but every day it is still my body / still uncontrollable
And the uncontrollable body exists and has and will always exist / for the uncontrollable body is every private body / whether or not it is a body of spina bifida / whether or not it is a body of disability / for any body may become disabled / and all bodies will always die / death is far beyond our control and we are already dying / this is the terror of the public body / that all bodies are uncontrollable whether in public or in private / that the public is a function of control and therefore a construct to deny our coming and present death / therefore the public is not real / and if there is no public then there is nothing to control / nothing to shame / maybe this is liberation
BRONWYN VALENTINE has an MFA in creative writing from the University of Alabama. Recent work has appeared in Quarterly West, Birdfeast, Jellyfish, and elsewhere. She lives in Ohio.