The Most Insidious Oppression

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.

How?

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.

Auditory Processing Disorder, What does it Mean?

As I explained in my last post, I was liberated by my Auditory Processing Disorder (APD) diagnosis. Of the 4 types of APD – Decoding, Tolerance-fading memory, Integration, and Organization, I have been confirmed to experience 3. My audiologist states I experience issues with Decoding, Tolerance-fading memory and Integration. He states he cannot rule out Organization as a potential component as well.

Post liberation, I find it easier to communicate with people because I can ask for conditions that facilitate my ability to hear and understand speech such as a quiet environment and seating where I can lip read. But people wonder: What was I hearing before?

Let me explain.

Have you ever used speech to text on your smartphone and watched the screen as the program sorts through multiple potential words and spellings until it accurately or inaccurately decides what you were trying to say?

That’s how I hear. It’s almost like Siri and I were separated at birth.

When I hear speech, I sort through multiple potential spellings and meanings and try to match the vague sounds I hear to the context of the conversation. I picture the potential spellings of words in my head nonstop to aid in my understanding. I think of this visual spelling habit as my internal closed captioning system.

I hear sound just fine, but individual speech sounds are very indistinct. When a word starts with the letter P for instance, I simply don’t hear the P. You say the word ‘play’, and I hear ‘lay’. You say ‘piece’, I hear ‘ees’. Well, I hear ‘ees’ if I’m lucky and there’s no background noise. Add background noise to the equation and I’ll only hear a long e  or ‘ee’. That’s a hell of a lot of English words to sort through to figure out which long e word you were using.

Okay, you may be thinking. That’s not that big of a deal, you obviously know people aren’t saying ‘ees’ or ‘ee’ to you, right? Just pay attention and you can sort it out.

Well, compound what I’ve described with other phonemes that challenge me and it becomes more problematic. I can’t hear most L sounds correctly. So ‘puzzle’ becomes ‘uzza’ because both P and L are involved. Imagine playing a game of hangman or Wheel of Fortune when you only have a few letters. That is what auditory life is like for me. I only managed to get this far because I have tremendous puzzle solving skills. Once you understand these dynamics, it is easy to understand how people with APD and fewer problem solving skills remain nonverbal.

In a face to face situation with no background noise I can supplement my understanding with lip reading and get by. On the phone I have no such benefit. You can see how I might fall behind in conversation as I’m trying to sort out sounds and the person to whom I’m speaking is just rambling on full speed ahead as people are prone to do.

Think about the multitude of unnecessary words you sprinkle into phone conversations. Think about the noise behind you when you use the phone. Is there music? Are you sitting at a table where others are having a conversation? Are you in a loud office environment? Are you alternating speaking to the person on the phone and also speaking to someone in the room with you? Ever turn your head from the phone to yell at your kid who was already screaming in the background? And God forbid, are you using the freaking speaker phone?

Now imagine someone like me on the other end of that phone conversation. I already didn’t stand a chance hearing 50% of what you said without visual context clues. Now you’ve just reduced my understanding to 20% or even 10%. I will probably ask you to repeat yourself, and you will probably become impatient and annoyed with me. You will think I’m not paying attention and when you later learn I have completely misunderstood something you said, you will assume I am stupid or that I suffer from a refusal to follow directions.

Think for a second about the social ramifications.

I have been absolutely shamed for my inability to hear, even in places where one might think people are peaceful and enlightened.

I once took a yoga class at a local community center. I had not yet been diagnosed with auditory processing disorder. When I arrived, the only spots left were in the back of the room, quite far from the instructor. Each time the instructor asked us to change asanas, I looked at the mirrors and at the movements of my classmates to understand what I was supposed to be doing. I simply couldn’t hear the instructor. I got through the entire series of classes that way and I really enjoyed the yoga experience.

After the last class, many of the students stuck around to thank the instructor and ask her where they could take more classes. The young woman in front of me told the instructor that she had enjoyed the class but that she preferred to be grouped with advanced practitioners in a private studio environment because she found it irritating that the community center had mirrors and that some people, she said while giving me a hard glare, were always looking at the mirrors and at other students instead of focusing on their own practice. I can hear tones perfectly well and her voice was full of contempt.

I felt so ashamed. I had been waiting in line to tell the instructor how much I had enjoyed the class and I had instead learned that this other student had been horribly offended by the efforts I had taken to follow the teacher’s verbal instructions. I turned and left the room after that woman spoke so cruelly, and it took me years to attempt a yoga class again. I knew I couldn’t participate without using visual cues, but clearly that pissed off other students. I didn’t know how else to get through the class, and I didn’t want to anger another practitioner.

I think of the many times I tried speaking with people I didn’t know well, usually coworkers, when they quickly verbally digress in a direction that I can’t follow. I try my best to keep up and I simply can’t. Before I know it they’re yelling at me. “It was a joke!, Don’t you get it?” It becomes clear that I’ve missed a cue, but I don’t understand what cue.

And I respond by smiling like I understand, just to try make the situation smooth again, but they can tell I didn’t understand at all. Their humor then turns to anger and they begin to berate me. “Don’t you have a sense of humor?” “Always so serious!” “Lighten the hell up!” Then they mutter something about what an idiot I am and walk away. This has happened more times than I can count. It sums up my entire working life.

I remember a Thanksgiving dinner at the home of my stepfather, who due to crazy family dynamics, I had not seen in several years.

“Do ya ha any is?” he asked me. There were lots of people at the dinner and the echo prone raised ceilinged home was filled to overflowing with voices.

I had been staring at his mouth, trying to sort out what he was saying. But I simply couldn’t figure it out.

“Do I have any keys?” I guessed back to him. I knew he was a car enthusiast, maybe he wanted to see what I was driving.

His brows lowered and his expression darkened. I was familiar with this disapproving look from my childhood. It was the look he had given me when as a kid I, “just wouldn’t listen.”

“Do you have any kids!?” he blasted back.

“Um, oh, no,” I replied as my face reddened. I really didn’t like making people angry.

These are examples of the things I hear, or rather don’t hear, and their real life implications for social interactions.

I hope this has shed some light on one presentation of auditory processing disorder. I further hope it encourages you to be patient with people who ask for repetition or exhibit misunderstanding. You can never presume that the person to whom you are speaking hears as you do.