Shame and disability

I have a disability. I am disabled. And, I have shame.

I have never written out those words, much less read them aloud to myself, feeling the edges of their meanings, as I do right now. I have said that I have a learning disability, but these words feel different. I have said publicly that I was diagnosed with dyslexia and attention deficit disorder (ADD) as a young boy, and I have been able to say, “I have dyslexia and ADD.” Actually, I have been able to say that when needed, and only sometimes because shame attaches to part of me when I say any of these words: dyslexia; ADD. Shame especially visits me when I call it what it is: being disabled.

Such shame builds over time.

When I was an undergraduate, a professor asked me in class if I had dyslexia. My body went rigid and I got tunnel vision. He asked in care and concern. He had no way to know; I had not told anyone. I was not mad at him. In fact, I love him to this day. In graduate school, a professor who learned of my disability told me I should go back to working construction. I came to hate that professor. But, I no longer allow him to hold power over me. Later, while applying for another round of graduate school, I stated on my application that I have dyslexia. No more cat-and-mouse. Even so, a professor, ripping apart my paper, asked if there was a situation connected to my writing. With a glint in her eye, she offered help. I had had enough “help” by that point to know that, as Anne Lamont says, “Help is the sunny side of control.”  I told her nothing was wrong. I did not come to hate that professor. Worse, I have no respect for her. I feared her, which was her game. I went back underground, hiding my shame and my disabilities.

These two professors were not the only ones interested in shaming the disabled. I used to be, too. As a kid in the eighties, I called others “retard.” I had an older brother whom I never knew. We were not to talk about him publicly. His name was Nick. He was profoundly mentally and physically disabled, and died young. I asked myself: Am I retarded and no one’s telling me about it? Are they calling me dyslexic and ADD so I won’t feel bad? How much of Nick is in me? Questions like these led to fear and shame — the cocktail of aggression. So I, the learning-disabled kid with the ghost of a dead handicapped brother, was happy to call others “retard.” Despite the sting it gave me, distancing myself from Nick felt good.

Shame wants to cover vulnerability. Shame moved me to hide my disability from myself and others by burying any sense of weakness in hard won success. So, I began learning Arabic as an undergrad, and not only have I learned it, I have learned to teach it. My Arabic is exceptional. My teaching is exceptional. I know that. I have spent most of my life working on these two things. Not just doing them, but working hard on them, and at different times in my career I have been advanced, if not high advanced, in three different dialects of Arabic, in addition to my skills in Standard Arabic. Take that dyslexia, and ADD, and retardation. I beat you! I deny you! 

It is still there. It always will be. I am not it, and it is not me, but it is part of who I am in this world. It was put in me and I recognized it in me, and I let it in. I also let in the shame.

[pullquote speaker="" photo="" align="center" background="on" border="all" shadow="on"]I have learned to embrace my shame.[/pullquote]

In kindergarten, I sat between the smart kids with tears streaming down my face as my teacher scolded me. I could not read. This was my first lesson in shame. I also learned that remembering what was said made reading less necessary. By college, I could read and write well enough and memorize the rest. I got good at memorization. It’s fun. I still remember my lines from my kindergarten play and I finished university with honors without taking notes in class. Does that make me smart? No. I do not  feel smart for that. I feel shame. You see, I do not know how to take notes. People talk quickly and then some letters reverse and I forget where I was and then the sentence gets stuck on a few letters, and maybe that person can see my writing and my spelling might be wrong and what are they thinking? Do they know? Can they tell that I am —? And then my hand is shaking and the doctors said that anxiety exacerbates what I’ve got, so I’ve got to relax and try to catch that next sentence, and where were we...?

Oh, yes! Kindergarten play lines, graduating with honors, and a sharp memory. Smarts? No. Not smarts. A survival tactic. Differently-abled? No. It’s “nice,” like someone saying “AWW.” Disability means I lack or find marked difficulty in relation to a capacity that is possible for most. And, disability does not come with extra abilities, despite my lifelong infatuation with Daredevil, the blind comic book hero. No, I just memorized most everything because anyone can. Seriously, read Joshua Foer’s “Moonwalking with Einstein.” I am not special. I am handicapped. Handicapped? Yes. And despite my hesitation, why the hell not say it in this way? It is true and accurate. Retarded? No. On the spectrum? I guess I’ll take it, but I am old enough that it was not part of my medical-DSM/Dyslexia/ADD-story, my story featuring shame.

My shame, despite its efficacy in compelling action, has been a tactic without strategy, a reaction and not a response to being disabled. To feel soothed, it has demanded praise and success, and I have complied. But, it has always fallen short. No matter the accolade gained, the shame does not subside. And, I actually remain less skilled at what I am doing because I remain fearful. Fear limits. Only recently have I begun to move out of it. I have learned to embrace my shame, feel it, and grieve what I denied myself through shame and grieve what my disability has denied me. I sit alone. I cry. I listen. Then I usually laugh. I feel as if I am without shame, shameless, which presents a freedom, and freedom is a strategy, a dangerous one. Yet, it beats shame. So, what instead? I do not know, and I refuse to offer advice. I just know from my story that while shame provided quick and hot burning fuel, a simple generosity for others and the multiple selves that comprise me has provided the basic ingredients of my learning and growth, and can abide more than I thought possible. 

Robert Greeley is a professor of Arabic, and is currently on sabbatical.