On Diagnostic Labels

My writing sometimes explores dynamics involving my disabilities. I live with both hyperacusis, which is an abnormal sensitivity to everyday sounds, and auditory processing disorder, which makes me functionally deaf in multiple environments including those with multiple speakers, background noise or echoes. It also interferes with my ability to remember anything that is shared via speech. Writing about my experiences as a person living with auditory disabilities has sparked some interesting conversations. One such conversation is about the issue of disability labels.

I see the idea of disability labels as somewhat analogous to racial and ethic descriptions in some cases. The labels I see as analogous to racial descriptions I will call benign disorders as they are conditions that are statistically experienced by a minority of people, but are compatible with life. In other cases disorders are things that must be treated or cured in order for life to be sustained. These I will call malignant disorders. Malignant disorders are those that if left untreated, are incompatible with life.

Our challenge is to understand that not all disorders are or should be treated as malignant.

People who live without auditory processing disorder have expressed discomfort and even hostility towards my use of that diagnostic term to refer to my inability to hear in certain situations. I’m guessing it is the word ‘disorder’ that sparks their discomfort, as I’m not aware of any such disdain being levied towards people who identify as hard of hearing, who likewise cannot hear well but have different mechanisms behind their inability to hear. The critics of labels vaguely posit that society would benefit from considering each human as an individual with different capabilities and honoring each person and their needs accordingly, while leaving labels out of the equation.

I disagree.

Let’s examine what a label is. Dictionary.com offers the following: a word or phrase indicating that what follows belongs in a particular category or classification.

It seems that the purpose of a label is descriptive, it helps identify a category in which something belongs. That doesn’t seem bad to me. I like knowing where things belong. But in life outside of the dictionary we have to look at how labels are used.

I think back on some of the labels that have been applied to me. Among them are: stupid, smart, crazy, sane, emotional, analytical, thin, fat, overachiever, underachiever, poor, wealthy, female, straight, dyke, nigger, white bitch, professional, unemployed, educated, ignorant, single, married, healthy, sick. There are many more than I can list here.

But you notice the contradictions?

All of the labels have been applied to me at some point when the person applying the label thought they had enough information about me to place me in a category among others who they thought also belonged there. Some of the labels are considered complimentary, some are dehumanizing slurs. Some of the labels were applied to me in the past and no one would think to apply them now. Others are a matter of perspective. To a person with no roof over her head, I may appear rich. To a billionaire I likely appear poor. If we think of the implications of rich and poor beyond the financial, a person with more friends might call me poor and a person with no friends might call me rich.

It is clear that sometimes labels are contextual and subjective. Sometimes they are nothing more than insults and slurs. Sometimes they can serve as confidence boosters. They can prompt feelings of hurt or inspiration, shame or motivation.

But what about diagnostic labels? Do they work the same way? What happens when we contrast historical diagnostic labels with current diagnostic labels?

Epilepsy, anxiety, paralysis, developmental disability, Hansen’s disease, non verbal, schizophrenia.

Falling sickness, hysteria, lameness, retardation, leprosy, dumb, madness.

We see the contemporary labels as more descriptive and less demeaning. But do the new labels help us see the whole person?

No.

But that is not a problem with the label. That is a problem with how we react to hearing a brief description that we call a label. We need to get beyond the philosophical error called the false dichotomy or false dilemma that presents when we hear labels, especially those involving the word ‘disorder’. The false dilemma posits that there are two available categories and you must choose from among them. In actuality, there are far more categories or options than those being presented. The false dilemma rears its head when someone asks you if you are voting for red or blue and ignores that purple is a candidate that you might like to consider.

A false dilemma becomes even more dangerous when not only do you believe that there are only typical states and disordered states, but that disordered states must be malignant or inferior. This is not a problem with the label typical or disordered, it is a problem with thinking this category of disordered is smaller or more restrictive than it is.

I have experienced two things labeled disorders that have profoundly affected my life.

The first is PMDD or Premenstrual Dysphoric Disorder. PMDD is a hormone based mental illness. Having PMDD meant that for two weeks out of every month I would become severely depressed. My sleep was disrupted, my personal insight was distorted and my energy level was diminished.

Sometimes I wanted to die.

I do think suicide is logical and possibly appropriate in some cases, such as when a person is terminally ill. But monthly ovulation is not a terminal illness. It is a normal part of being a biologically female human between the stages of puberty and menopause. So wanting to die because of ovulation is not a typical response. It is a disordered response. A malignant disordered response.

The other disorder I have been affected by is Auditory Processing Disorder. For my entire life I have had difficulty hearing and understanding spoken language a great deal of the time. I did not have access to health care for most of my first 28 years of life so I could not discuss the problem with a physician or audiologist. I did not pass a grade after 8th due to unstable living situations and an inability to hear in classrooms that I didn’t understand. But I have always loved to learn, so I got my GED and enrolled in college.

I became very aware I could not follow spoken language outside of one on one conversation when I was in college. I could not understand anything in auditoriums classes and I did miserably on my spoken French quizzes, despite doing incredibly well with reading and grammar. I went to the student health center and asked for a hearing test. I was told my hearing was fine and was instructed to just pay attention. But I was paying attention.

People with APD can hear sound just fine. We just have difficulty getting meaning from sound. There are generally agreed to be four subtypes of APD, and I have three. The three I have are: decoding- which is the ability to quickly and accurately process speech, tolerance fading memory- which is understanding speech in noise and short term auditory memory, and integration, which means unlike an audiotypical person, I have no binaural symmetry. Therefore the input from my right ear does not match the input from my left, and when the two signals meet in the middle in my brain, my brain has to do more work to sort out the meaning of the signals.

Working with my audiologist has taught me that I simply do not hear some sounds at all. I cannot tell some words apart, even when they are spoken to me clearly and distinctly with no background noise.

I had this going on for my entire life but was told by the audiology tech at student services that my hearing “fine”. I still experienced the day to day fact that I could not get as much information from lectures in a classroom as I could from reading a book.

And I didn’t know why.

I experienced the reality that I had an incredibly hard time speaking up in classes and groups, because I couldn’t figure out how to interject or be sure I was on topic.

And I didn’t know why.

I experienced the reality of having to be guilted into going to gatherings I did not want to attend because I was tired of being unable to participate in conversations involving more than one person, or even one person if there was music or other noise in the background. I experienced giving up on speaking entirely in many environments because I could never seem to respond appropriately. I was tired of being mocked, tired of being labeled antisocial, and tired of being called a stuck up bitch because I could not socialize properly.

And I didn’t know why.

These experiences made me lose my voice. I stopped trying to talk so that people would stop ridiculing the off topic things I said. I stopped talking and started smiling pleasantly instead, I felt it was the best I could do. But that led to other conclusions about me.

I started being asked things like, “Are you just gonna stand there and look pretty?” I got called things like “grinning idiot”.

I started to believe erroneous things about myself too. I began to think that social anxiety was my problem. I didn’t know of anything else that could explain my inability to function in groups. I spent money on therapy that didn’t help. There was no shortage of therapists who accused me of various dysfunctions I didn’t have, all the while overlooking my disability. I took benzodiazepines that simply exacerbated my depression.

Not knowing I had an auditory disorder led me to believe I was dumb. It led me to believe I was an academic fraud, despite my ability to synthesize ideas through reading and writing. I was told on one hand my hearing was normal or typical, but my experiences said otherwise and it was seriously impacting my functioning.

Receiving the diagnosis of auditory processing disorder is one of the most liberating experiences I have ever had. It created context and clarity for my perceptual differences.

Now that I understand how my brain and ears work, I can take effective steps to counter or embrace the differences. I understand that I simply don’t hear some sounds accurately, or even at all. I am functionally deaf in many environments. That gives me choices and options within a logical framework.

The label hating critics assert each learning style should be respected individually. That’s a charming goal but you have to be able to identify what the style is before you can cater to it. Before my diagnosis I could not understand that I learned differently. I was left to presume I lacked intelligence and social skills. I could not have reached out to an instructor and asked for an accommodation that I didn’t know would benefit me.

Now that I do have a diagnosis I understand myself and my brain as never before. I am embracing my functional deafness and learning American Sign Language. Before my diagnosis I only had the choice of opting out of presentations and lectures, or hearing bits and pieces of what was said. With an ASL interpreter, I can fully participate where I was never able to before. In smaller groups I can simply ask for people to refrain from speaking over one another. I can ask for acoustically preferential seating because I know it helps me.

Through these mechanisms I regain my voice in forums where I had been silenced.

I am participating in audiological therapy for the processing disorder, not so much to ‘fix something that is broken’ but to better understand my experience. Just a few sessions have taught me that I cannot hear and distinguish certain phonemes. It gives me a framework for living in an audiocentric society.

I get why people don’t like the word disorder. It can be stigmatizing and separating. It can tempt people to think in terms of false dilemmas when they shouldn’t. It can tempt people to divide other humans into the typical and the malignantly disordered and forget that there are millions of experiences in between that should be accepted as part of human diversity.

That is not a problem with the words typical and disordered, but rather a problem with believing in a binary when there is a spectrum. All of human existence is on a spectrum. Many health conditions are on a spectrum. Some require certain medical interventions, some are just diverse ways of presentation that require no medical treatment, only respect for and understanding of our differences.

This issue of labeling is very similar to discussions of descriptions regarding race. All educated people know that race is a social construct, but only the most foolish of us believe it follows from that fact that racism is non existent. Social constructs matter in the here and now. To assert that society would be better off if we ditched disability labels is analogous to making declarations that we should all be ‘color blind’. It is naive and hurtful. It is an absurd view embraced only by the most insulated and privileged or the most vicious and demeaning. It rejects the distinct experiences associated with certain ways of experiencing this world.

The people who are speaking most loudly against disability labels in the US are the privileged white majority. They seem horrified by the threat of ‘otherness’ that could come from a label. They are terrified in anticipation of the pain of not fitting in. The pain of being treated differently. The pain of losing advantages never earned. I get that. At least in theory I do. I’ve been brown my entire life. And I did not and do not always fit in.

From the perspective of a brown person in a white society, let me put it plainly:

Other is not bad. Other can be beautiful.

My mother is white, my father is black. While I prefer to identify as mixed, I may identify in the past tense as black or white because I was in situations where that is the only way I was perceived. I refer to myself as black when talking about my childhood because that is the only way I am aware of having been perceived at that time.

Black was my experience as a child.

My mother tried to hide and downplay my blackness. Clearly the thought of being an ‘other’ who was not privy to white privilege was anathema to her. She couldn’t see a potential for beauty or success outside of the norm to which she was taught we should all aspire. She was wrong to try to keep me from my heritage, just as those who seek to squelch disability identification are wrong. They cannot see the beauty in other, they only see exile. We must move beyond exile to full humanity and self determination.

This analogy does not work for all disorders.

I could not have taken the same position towards my PMDD. Believe me, I tried. I tried to accept that I had different moods than many other people for two weeks out of every month. I accepted I was different. But if you accept something that is going to kill you, you may not be stigmatized but you still end up dead. If you have tumor and prefer to think of yourself as ‘experiencing cancer cells’, and reject being labeled a ‘cancer patient’ you probably still die if you opt out of treatment.

Maybe all we need to do is to distinguish between malignant disorders and benign disorders. Until then, I think we should accept that disorders are not necessarily red or blue, and that we are free to vote for purple.

Just as people of color and LGBTQ people continue to work for better representation in society and media, so do people with disabilities. My auditory system is benignly disordered and beautiful, just as I am brown and beautiful. My diagnostic labels have helped me understand my differences and work with them. I choose to be self actualized, dynamic, and labeled.