by Melody E. Holloway
Any experienced neurologist, psychologist, psychiatrist, psychotherapist, or other professional clinician who studies the biology of the human brain and complex pathology of the mind will maintain that one of our natural encoded instincts is to stereotype, categorize, compare, and place everyone else in metaphoric boxes. We all do this whether we admit it or even realize we’re doing it. Our ingrained implicit biases are taught, programmed, or encoded in our brains even before we are born. We internalize ideology, cultural beliefs, feedback, and core values programmed by family of origin and passed down through generations. We are influenced by media portrayals of people who belong to different races, ethnicities, age groups, economic brackets, sexual orientation, gender identity, and yes, disabilities and medical conditions. Medical and mental health professionals turn to dictionaries, glossaries, manuals, and evidence-based treatments in order to make decisions on behalf of someone in desperate need of help. Judgment is clouded by the bombardment of diagnoses, prognoses, disorders, terms, and technicalities more often than most care to admit.
After my unexpected conception, traumatic emergency premature delivery, and touch-and-go beginning, my parents had no idea what to do or where to turn for advice. Not only did they have a baby daughter whom they were told would most likely not be possible, they had a sickly, abnormally tiny, totally blind 2-pound, 14-inch underdeveloped micro-preemie. When faced with the unimaginable sudden challenge of a loved one either born with perceived barriers or who receives the diagnosis later in life following a tragic accident, illness, or injury, a family’s first reaction in many cases is to take complete control over their loved one’s circumstances and situation. These decisions are influenced by society’s preconceived notion of what someone can and cannot do or who someone truly is due to our labels, differences, or boxes.
When we are children, we have our own preconceived idea that our parents know or should know the meaning of life and how the world works. The moment we are born, we begin to attempt to make sense of our environment, judging by cues put forth by our physical senses as well as close contact, voice inflection, spoken word, and attentiveness of our initial caregivers, whomever they happen to be. A traumatic in utero environment, unstable upbringing, neglect, and invalidation inflicted by those who legally protect, nurture, and decide for us are internalized and programmed, whether positive or negative. The frequent back and forth feedback we receive as well as initial decisions made on our behalf can chart the course of the rest of our lives, no matter how hard we try to hold out hope for a brighter future. A house will become unstable and eventually collapse if the foundation is not properly established. The structure, plumbing, and electrical wiring are not safely installed no matter how much nice furniture and elaborate decorations we display to create a facade of the perfect family portrait.
Our doctors, therapists, teachers, and other professionals with legal licensure are just as much a part of society as our families and ourselves. They place us into boxes upon our arrival to a class, appointment, or procedure based on first impression. I would be financially capable of moving from my current toxic environment if I had a quarter for every time a doctor, nurse, technician, case manager, social worker, health insurance representative, or Social Security Administration agent asked, “How do you clean, prepare meals, shop, or travel to appointments? Who helps you take medication? Who fills your organizers? Who checks your vitals at home?” If I speak of my uncomfortable symptoms or diagnoses using an experienced, well-researched vocabulary equal to theirs, they remind me in a bored, condescending, antagonistic, patronizing tone, “You are blind. You have schizoaffective disorder Bipolar Type 1, obsessive compulsive disorder, borderline personality disorder, generalized anxiety disorder, and post-traumatic stress disorder. You are just anxious, depressed, paranoid, psychotic, dissociated, disoriented, confused, and obsessed. You are overreacting and worrying.” As if these boxes mean I have no idea what I am talking about or asking for. Oh yes, and my all-time favorite response: “You should continue to live with your parents. They take such good care of you. It will be easier for you. If you desire more independence, you have to prove to the system that you can care for yourself.”
People who are unwilling to consider the detrimental nature of a client’s or patient’s environment or unusual disturbing life experiences are also unwilling to see past their own programmed beliefs. If I tell a certified professional how I have been living pretty much on my own for years, simply co-existing within the same legal dwelling as the people who created me due to unforeseen circumstances and bureaucracy set in place by an overwhelmed, underfunded, misguided system intended to protect the welfare of law-abiding citizens, boost productivity, financial prosperity, and perceived global success, I am downplayed, ignored, or dismissed. If I bring up the fact that not only do I care for myself almost exclusively, but previously met the holistic needs of one of my truest, dearest, most steadfast advisors and confidants who required a higher level of attention, care, and supervision to the best of my ability with the tools and supports available to us at the time, I am at times sloughed off and presumed psychotic.
My years of extensive psychiatric treatment as well as my best friends in the ACB community, LGBTQ and mental health communities have helped me understand that my symptoms and situations are not my fault. The intimidation, control, and emotional power hold my father has used all my life to get what he wants and demand respect and resigned compliance from my mother and I as well as my mom’s passive-aggressive coping mechanisms and the ammunition she gives society on a daily basis to feed the capability to place me in boxes has driven me beyond the dissociative breaking point.
The healthcare system is not quite trauma informed enough yet to fully grasp the concept that all mental health conditions, as well as the majority of physical diseases, especially autoimmune disorders, are induced and increased by a wide spectrum of traumatic events, environments, and situations. The true definition of trauma is not always clear for everyone. A multitude of comorbid labels, documentation, and public record follows someone for life. My 47 whole blood, platelet, and plasma donations; petitions I have signed on behalf of environmental, animal rights, children’s, elderly, or disability advocacy organizations; activism campaigns in which I have participated; financial contributions; certificates, medals, and trophies I earned for excelling in academics as well as art, music, and writing which are engraved with my name in braille and collect dust over a decade and a half later, or my record as valedictorian of the Ohio State School for the Blind’s class of 2004 seem to be moot points today. I am not necessarily proud of these accomplishments.
I am now known for crying spells, panic attacks, motor ticks, rapid inconsistent pressured speech patterns, loss of touch with reality, catatonia, emotional dysregulation, racing thoughts, and disorganization. Many of my closest friends remind me I will live with conditions, symptoms, and reactions I simply cannot help or completely control. They understand brains are coded, wired, and organized unexpectedly by life’s hard knocks. This is unsettling if my obvious visual impairment and less obvious additional diagnoses will confine me to boxes.
Nobody lives in boxes. The boxes are often seen before the person. If someone is placed in multiple boxes, they feel divided or split in separate sections like our planet divided by the equator. The people who place us in boxes do not understand the contents. They do not have to live inside our bodies and minds or understand our disabilities. Whether the box sorters are the cashier checking us out at the grocery store, the police officer taking a statement after an incident, the attending physician responsible for our medical care, the health insurance agent in charge of benefits, the Social Security claims representative under assumption that anyone with a disability who began drawing supplemental benefits before age 18 still requires a payee, or our families of origin, they cannot comprehend how we experience and adapt to our conditions no matter how much they study or interact with us.
With a new year on the rise, I hope to become further involved with ACB and other like-minded grassroots advocacy organizations made of kind, loving, supportive peers who share a common bond of experience, knowledge, and understanding in order to beget positive change and reform. If the general public had more opportunities to ask questions, learn about our disabilities, embrace differences, and feel comfortable doing so, not only can we show society we can help ourselves, the positive attributes which stem from our disabilities can also help them in turn. Morale and self-confidence improve when someone who lives with chronic needs can truly benefit or care for someone else who also has significant needs. Our greatest roadblocks to living our best quality of life possible are not in fact our diagnoses; they are the barriers which society puts in our path, the boxes in which we are placed.