I have recently had the misfortune of allowing myself to be lured into a fruitless and asinine conversation with a person who holds that disability labels are nothing more than useless means of oppression. This person had read a blog post I had written, and was challenging the legitimacy of my inability to hear in certain environments due to the auditory processing disorder I have experienced my whole life.
This individual insisted that the world would be better off if we simply accepted that we are all different, without bothering to describe our differences. They stated that the problem with disability isn’t disability itself, but the societal stigma associated with disability. Get rid of the disability label and there goes the stigma. And like magic the disability itself is then remedied.
They envision a utopia where we can all live label free and state subsidized lives. As I dug deeper into the dynamics of this conversation, I realized the critic didn’t have problem with all disability labels. They only had a problem with the ones that describe invisible disabilities.
I asked them why it was okay for a deaf person to identify as deaf, but so objectionable for someone like me, who is hard of hearing due to a different set of mechanisms, to identify as having an auditory disability. After attempting to deny bias against invisible disabilities, this critic proved their bias by actually asserting that deafness is obvious, and doesn’t have to be diagnosed by a physician. The implication was clear. If my lived experience of disability isn’t obvious to this person who I’ve never met, whose agenda is threatened by its existence, then it isn’t real. It is an imaginary social construct or a psychogenic fabrication.
So listen up! All of you people who live with epilepsy, PTSD, Crohn’s disease, premenstrual dysphoric disorder, chronic pain, traumatic brain injury, postural orthostatic tachycardia syndrome, cystic fibrosis, lyme disease, narcolepsy, ulcerative colitis, fibromyalgia, myasthenia gravis, Meniere’s disease, multiple sclerosis, Ehlers Danlos, mastocytosis, and all the rest of the utterly debilitating invisible conditions that make your life a daily struggle, take heed!
It isn’t your medical condition that is detrimental to your everyday life, but the stigma associated with your medical condition! So get up out of your wheelchairs or beds, or off of your toilets as the case may be, and go forth to flourish in the world. Nothing is holding you back but words and attitudes!
Offended yet? If you live the everyday reality that is life with an invisible disability, I’m guessing you might be. And you have every right to feel that way.
What I declined to point out to this individual who posits that my subtle (to them) auditory processing disorder is nothing more than a neuroplastic nuance, is that for my entire life my APD was obvious. Before college, the issue is that the people around me chose to ignore my reports that I couldn’t hear, and instead force me into a box filled full of the stereotypes they thought I should embody.
It is far easier to assume that a female student of color with no familial support has a psychological problem, an addiction problem, or an immorality problem, than to take a deep enough interest in her challenges to determine that she actually has an auditory disability with implications for learning. That is what I experienced in the many high schools I attended. I was presumed delinquent when in fact I just had sensory difficulties.
The fact that I started to skip class in 8th grade so often that I was absent more than I was present, and continued to skip class all the way up until the moment when I dropped out in 11th grade was blamed on presumed delinquency and drug use. In reality, I loved learning, but became overwhelmed and confused in the loud echo chambers that were high school classrooms. If any teacher or administrator had asked, and only one ever did, they would have learned that when I skipped school I preferred to spend my time in quiet libraries, not doing drugs or committing crimes.
Yes, I had an unstable living situation and bounced from house to house. Yes, I was a trauma survivor and a prostituted teen, but that wasn’t the whole story. That was actually a very small part of the story.
It was however, what my lived experience was reduced to by authority figures who took no real interest in my life. I was told by my few friends that my teachers thought I was stoned due to my vacant expression and lack of participation on the rare occasions when I did show up to class.
Drug addicted. Disengaged. Underachieving.
Like most teens, I did try a drug or two, but I never experienced addiction. I didn’t even come close. I hated the way drugs made me feel, so I dabbled here and there when I visited the white suburbs where drugs were readily available and eagerly used by the people in my age group. I dabbled, disliked, and never touched them again. But that’s the first assumption made of a low income student of color when they start to fail. Drugs and misbehavior.
I would have loved to have been engaged in the learning process, but it wasn’t possible due to my undiagnosed disability and my unstable living situation. And underachieving? Ha. We’ll get to that later.
Since I’ve always loved learning I didn’t let an inability to finish high school stop me from getting an education. I got my GED within weeks of dropping out and enrolled at my local community college at age 17, when I was supposed to be in my senior year of high school. I hoped that college would make more sense than high school. Fortunately, it did. I started by enrolling in four classes. I dropped two that took place in classrooms with horrible acoustics and got Bs in the other two classes whose content I learned to master from reading.
Later, at the University of Kansas, I realized that I couldn’t hear much in the majority of my classes and recognized that I would have to adapt regardless. At such a large university, many freshman and sophomore classes are taught in auditoriums with dreadful acoustics.
I had to finance my own education, so I worked in several departments in a grocery store. I frequently got yelled at by customers. In the deli I was berated when I grabbed the wrong meat or cheese to fill orders. In the bakery I was called stupid for asking customers to repeat their cake decoration requests to me. I went to the student clinic and explained that I was having problems hearing. A tech gave me a hearing test and pronounced my hearing ‘fine’. She told me to pay attention and brusquely sent me away.
I was perplexed but felt forced to accept the results that were clearly in conflict with my lived reality. Since I was told my hearing was ‘fine,’ I directed myself to accept a different conclusion. I decided that if my hearing was normal, and I couldn’t follow lectures, that I was secretly dim. I perceived myself as an academic fraud. That conclusion I arrived at on my own, not through the judgment of any other human. And it is what began to make me melancholy. But I wasn’t ready to give up yet.
I somehow managed to graduate with a B.A. in Philosophy despite having not spoken in class more than a handful of times over the entire course of my undergraduate career. It was so hard to follow conversation among multiple people that I could never insert myself into a classroom discussion and be assured that I was speaking on topic. My grades in discussion sections were abysmal. But I did manage to graduate with an overall 3.27 GPA and with two completed graduate level research projects.
I read every textbook cover to cover and I spent hours in the library independently researching what I hadn’t been able to understand in the lectures. Between my supplemental reading and my 25-50 hours of work per week, I lived a life fueled by a desperate desire to be liberated from poverty by education. Sleep was no more of an option than failure. There was no safety net.
My college experience completely destroys my critic’s theory that stigma is the problem, rather than the disability itself. You see, once I was in college, with the exception of a handful of social science classes that required a discussion section, and foreign language classes that required conversation, there was little evidence at all to the people I interacted with that I experienced any kind of deficit. People thought I was simply quiet and reserved, and I was accepted as quiet and reserved.
I was not treated badly or differently by the faculty and staff while I was in college. My academic performance was actually celebrated. I got multiple scholarships and awards. And the praise and rewards had no effect at all on my inability to hear. Kindness and encouragement didn’t result in a miraculous audioplastic antidote. I was only treated badly at my grocery store job, and that was the least important part of my life.
There was no disability stigma, because no one, including me, knew for certain that I was disabled.
And I allegedly wasn’t disabled. But there has been no question, from my perspective, that throughout my entire life I couldn’t hear. But I didn’t have access to health care between ages 10 and 20 because of my economic reality. I only got access at age 20 because I paid student health services fees at my university. I didn’t get employer sponsored health insurance until age 28.
After scoring in the 88th percentile on the LSAT, I applied to and was accepted to 7 law schools. I visited two of them and realized I could not follow the lecture and debate format in the law school classroom. Saddened, I realized I would have to choose another profession.
Too bad so sad, right? I got through my undergraduate studies okay, so why would I want to acknowledge my APD now?
Well, after I sustained a medically induced brain injury in 2014, my APD was profoundly exacerbated and I also lost the intellectual coping skills which I had used for my entire life to offset my APD. The brain injury also prompted APD’s evil cousin, hyperacusis, to join in my auditory dysfunction. I had always been sensitive to sound, but after my injury my sensitivity skyrocketed and I became unable to think at all in noisy environments. Due to the medical negligence that injured me, my APD is far more severe now than it was 20 years ago. But it is also due to my brain injury that I finally got diagnostic confirmation of my lifelong inability to get meaning from spoken language.
My diagnosis was made possible in large part because I am no longer an impoverished child whose voice exists to be ignored. I have education and health insurance. I have medical access that comes from financial privilege, thanks to my hard working spouse.
I estimate I hear with at least 40% less accuracy now than I did while in college. But regardless of severity, why on earth would I pretend I’m not disabled and continue to struggle to learn as I did as an undergrad? I now know there are measures I can take to avoid that torture, so by all means I am going to take them. I am learning American Sign Language, because my visual skills are strong. I can ask to sit near a speaker so that I can use my lip reading skills. I can explain my inability to contribute orally in groups and offer to make written contributions instead.
My lifelong inability to speak in classrooms, groups, and meeting was mischaracterized as social anxiety or profound shyness, dullness or drug addiction, depending on who was doing the mischaracterizing. That mischaracterization was one aspect of the true oppression.
Take a moment to consider the impact of not speaking in meetings on my life as a professional adult. I have lost promotional opportunities for which I was otherwise qualified due to my inability to speak often or consistently in meetings and groups. I avoided social events such as picnics and happy hours, not because I disliked the company of my coworkers, but because I became confused and disoriented in gatherings with so many voices.
I have no interest in sitting passively and living a government sponsored label free life. I have no interest in missing another educational opportunity as when I missed out on law school. I have no interest in being bypassed for employment opportunities or promotions.
I prefer to live up to my full potential while experiencing the reality of my disability. Now that I have explored the dynamics of the interaction with the person who denies the legitimacy of invisible neurological and audiological differences and disorders, I can better address what really happened. I recognize the interaction for what it was, which is that most insidious oppression known as gaslighting. My experience needed to be invalidated because it is in conflict with someone else’s agenda. An agenda that oppresses while hiding behind a facade of liberation.
I see my opponent’s argument as similar to the arguments of people who insist that they are, and that everyone else should be ‘colorblind’. They naively and absurdly think we as a society can heal the reality of thousands of years of racial injustice by simply declaring that we’re all just the same. While humankind does have more biological similarity than differences among ethnic groups, culture and history very much matter. Lived experience matters.
Perhaps while I’m attempting to pass as neurotypical as my critic would prefer, I should try to pass as white too. I’m sure that would make lots of people a lot more comfortable when they are around me. They wouldn’t have to worry about those awkward moments when I call them on their racist remarks. I’d simply smile at the watermelon jokes and tuck my head. Cute, quiet, and obedient.