A Cog in the Wheel

Why does society reduce humanity to mere minions of production? There is scarcely a hem’s stretch of fabric to weave meaning and worth along when one cannot work. When I say one, I mean many. Despite hegemonic standards to silence the chronically ill, we comprise a burgeoning chunk of beating hearts. Our days, months, and years creep by wound in a web of invasive procedures, pain, degrading treatment by misinformed medical staff and a gradual alienation from ourselves and others. If this, the sum’s worth of sustaining a pulse, doesn’t equate tokens of awe and social standing, what does?
Doing. The occasions which I’ve been requested to churn out a daily log of my output, successes in creation, are myriad. A flip book of faces, both familiar and stranger, feel compelled not to know HOW I am progressing in my steep climb of Lyme, but rather WHAT I’m doing in the meantime. In the meantime? My days have rocketed into a sphere of space defined by a continuum of pain. To explain how bone-crushing, vomit-inducing, silent-screaming pain can make even the existence of life superfluous to a healthy someone, is impossible. As if marinating in a viscous stew of torture weren’t enough, I’m still expected to conform to ideological demands to be, do, make more. But I can’t. Therefore, in a culture creamed by means of production and fortifying character through economic prowess, I’ve become a deviant. 

A word to Marx: There is more to life than surplus value. Cultivating worth through work excludes a significant parcel of humankind that is not able to do so. Social mores posit that there is no cause more noble than saving a life. The subtext elaborates, through, stipulating the heroism of sustaining pink pallor to be rooted in profession. Doctors are lauded saints and adorned with accolades. Those of us saving our own lives, however, often suspended in a warp of getting through this very now, one tumultuous shred at a time, aren’t doing anything with our lives. 

This standpoint is problematic on multiple levels. Not only does it damper further the quality of life for the chronically ill but it also perpetuates a divide between us all. If the pinnacle of connection among humans revolves around production and climbing the salary ladder, relationships falter. I’m not even close to the lowest rung of that ladder. Because I have been socialized to be, do, make more, topics for conversing about experiences outside of this means-to-an-end merry go round take considerable inquiry to evoke. This exiles me to tugging ancient threads of past accomplishments that now have little meaning. My current attempts at forging relationships are degraded by pressure to be the woman of my past. 

I’m banishing Marx to the backseat in favor of a different view. Enter Max Weber, often remembered as the “father” of sociology. My college years of theory are as arthritic as my joints so don’t quote me on this. Weber believed (even in his time) that technology advances permitting efficient routinized production rendered us robots. Assembly line creation bolstered bank accounts while alienating us from ties binding us to one another and also ourselves. This dehumanization reduced us to mere “cogs in the wheel,” lacking individuality and losing one another. The application of Weber’s theory to the severed web of todays’s society makes sense to me.

I wonder then, if we aren’t the mechanic drone of work, school and the scurrying hum drum of doing, who are we? Who am I? I honestly don’t know, but it’s a place to begin again. 

As I forge ahead to weave meaning and purpose into a tapestry of illness, I invite you to consider your own trajectory; highlighting instead of your resume, aspects ethereal, intangible or perhaps none of the above. Just think on it. 

Art by Sebastien Millon

Labeled Disabled

            “Are you retarded?” The words hang in the air as I pause, consulting my 8 year-old reflection in the mirror of the school bathroom. I exhale, my adrenaline surging, my hands shaking as I remind myself that she isn’t worth it. She isn’t worth my well-memorized, sensitive speech about cerebral palsy and how even though I stopped breathing at birth and walk and talk differently, I am just like her. I know this is a statement, not a question, so I do what I can to grasp at any shred of self-respect available, rest my hands on my hips and dish it back out. “Are you?”

            When I was a kid, I used to think that being dismissed and belittled because of my disability was temporary. As I’ve gotten older, though, I’ve come to find that adults, and ironically, those in the disability field, are the most ignorant because they think they know it all. Now that I’m older, have shed my blonde locks and patient smile, people don’t ask me if I have a disability, they do much worse. They don’t ask.

            I have become invisible in a society intent on ignoring people with disabilities, leading me to question sometimes, if I exist at all. It’s no question that we live in a culture demanding conformity. It may be surprising, however, for some to learn of the severity in penalty for those who cannot conform, or choose not to. As much as I’d like to say I am a rebel, that word better describes my mom. Since the early days when she kicked a physical therapist out of our home for blaming my late physical development on my mother because she held and loved me too much, to the repeated times of advocating for me throughout the nightmare of my education, she is relentless in enlightening people.

            Despite educating people and us both taking a stand for equal rights for people with disabilities, the injustices against me endure. The punishment for pursuing an education, developing friendships, having expectations and deviating from the medical model’s prescriptions for how my life should be, are costly. Instead of being supported and encouraged to pursue my dreams like any able-bodied peer of mine would be, I am told that I’ll never…you fill in the blank. Doctors, teachers, case workers, peers, the very people who are supposed to support me, shoot down my dreams, one at a time. Some even take it upon themselves to ensure that despite my attempts to level the playing field, to gain some status and respect, credibility and to be taken seriously, I remain subordinated and pitied. 

            Case in point: Two high school staff members clearly expressed their subscription to dominant ideologies about people with disabilities by electing not to make proper arrangements for the administration of my Advanced Placement (AP) English exam, even though they reassured me they had. After one interruption after another throughout the test-taking process, one teacher accidentally deleted an essay I had been toiling over for two hours, forcing my hands to cooperate with me in getting the words that illuminated my mind out onto the computer screen. After deleting it, I’ll never forget what she said to me: “Briana, you’re lucky it got deleted (as if it were an accident) because I read it, and the truth is that we both know it wasn’t good.” She then proceeded to tell me, in so many words, that what was the point of even taking an AP exam when I wasn’t going anywhere in life, anyway. My test was disqualified because my teachers didn’t care about my future, they didn’t think I would pass the test or ever amount to anything. Only after pursuing legal action was my exam graded. I got a 5, the highest score possible.

            This incident is not an isolated event for people with disabilities. Unfortunately, an epidemic of erroneous stereotypes that portrays people with disabilities as burdens, castaways to be “dealt” with, has lead to a system of institutional oppression. What does this mean? Basically, it means that our society has forced people with disabilities into the fringes, deeming them inferior and therefore setting them up for failure. It is no wonder then why they do not have the resources they need to be successful in education, jobs, and relationships when they have been segregated for their entire lives. When they reach adulthood, and find themselves without natural supports of friends, connections, or hope for the future, the system blames them and their parents.

            The truth of the matter is that although the medical field leads parents to believe that they have to follow the rules and that having a disability means you automatically surrender your own freewill and watch your dreams fall by the wayside, it doesn’t have to be this way. Parents need to know that they have a choice; to choose inclusive education, to say “NO” to traditional medicine in favor of alternative therapies, to trust yourself. You have the right to say “YES” to doing it your way. As my mom says, “you and your child are in the driver’s seat. This is your life.”

            Yes, it most certainly is and we are here for you. We are available for disability awareness trainings, consultations for businesses looking to be more welcoming to those with disabilities in our community, as well as life skills coaching for children, teens, adults and their parents. We know that doing life on your own terms can be difficult and lonely. I’ve watched friends and family members fade into the background because my mom and I have made decisions for what we believe is best for us. But we’re here for you, to support you in whatever ways you need and to offer resources.  

            Friends sometimes ask me if given the choice to do it all over again, to start fresh and avert the trauma that caused my disability, would I do it. Would I choose not to have a disability? I have always found this to be an annoying question, partly because I can’t return to my mother’s uterus for a second take and partly because they ask this question already expecting me to respond with some heroic, “what doesn’t kill me only makes me stronger” wisdom. They expect me to say no, to confirm that I would not choose a different life, that I am grateful to suffer from others’ ignorance so I can teach them. They are wrong. 

            If I were to honestly answer this question, I would point out that nothing about the way I entered this world was on my terms. My birthday was preselected as a deadline, synthetically induced. Chemicals forced my mother’s body, to eject me or as she says, “to fly” out of her womb, rushing a natural process that should not, in my opinion, be tampered with. A doctor with a social commitment chose to speed up the birthing process so he could play golf, or something to that effect. The consequences of his decision have and continue to ripple. He may have met his deadline but at the cost of rendering a perfect baby dead within moments of taking her first breaths.

            Since the day I was born and died, others have made choices for me. Because of taken-for-granted assumptions that people with disabilities are broken, wrong, incapable, peevish, stupid, a waste, the stain of humanity, the list goes on, others have usurped my power as a human. Few have taken the time to ask me what I want, what I dream of, how I want to live and how they can help. Instead, since my birth, my mother and I have been thrust into a system of doctors, therapists, government workers, and bureaucrats who all think they know best. They talk at us, telling us what I will and mostly wont do—live, walk, talk, achieve, marry, have a family—essentially, telling us that I can’t have dreams and why would I, I am just a “disabled person,” after all, right? 

            Wrong. I am a person. Period. I am human and just like you, I breathe, have blood coursing through my veins, good days and bad. The scarlet letter “D” I bear is not due to my disability, it is because of the way we—all of us, you and me—have come to fear what this word means. We just don’t know so we believe what we hear. What I am telling you, begging you to hear, is that YOU can change the lives of people for disabilities, to empower them, by changing your mind. Be aware, look around at who is being ignored, ask questions and listen to what people say. Just be still and listen. Do something because if you don’t, who will?

            I often trip and fall, scraping my knees, bruising my arms, and sometimes my ego. My unpredictable balance is predictable but that I sometimes spend minutes, chunks of time that feel like days, on the ground with people walking by pretending not to see me, floors me every time. When time permits, I will sometimes just stay still, watching others avert my gaze, hurrying by. I stay on the ground not necessarily because I need others to help me stand, but because I want to know that there is someone who takes the time, the concern to see what we should all be looking out for—each other.