Category Archives: disability

Face to Face with Sharrona Pearl

I recently had the pleasure of speaking with Sharrona Pearl about her new book, Face/On: Transplants and the Ethics of the Other. Below are excerpts from our conversation, which ranged from disability, to artistry, to parenting, to sex transitions, all illuminated by Sharrona’s insights from the history and culture of face transplants…

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I May Not Heal, But I Will Live Better Thanks to Occupational Therapy

Last year I learned how to chop a carrot with my eyes closed. While being filmed. Sounds like one of those crazy reality cooking shows, like “Cutthroat Kitchen,” doesn’t it?

Actually, I was in the model kitchen at the Lighthouse Guild for the Blind in New York City, and the filmmaker was Joseph Lovett. We were shooting a brief documentary designed to teach ophthalmologists when and how to refer patients for low vision therapy. I was grateful for the care offered to me by the Lighthouse Guild, and I had agreed to be a sample patient for the film…

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Diversity Works, but Only if We Can Forgive One Another

“We are a divided nation,” Donald Trump repeats again and again.  And then he makes plans to divide us still further: registration of Muslims.  Stop and frisk policing.  Massive racialized screening and deportation.  Trump leans on the support of white nationalists who would like to make us “undivided” by eliminating anyone who isn’t white and Christian.  Even many of his less extreme supporters seem to feel like the only reliable way for us all to get along is for us to be more alike, not just in our basic political commitment to constitutional democracy, but in the specifics of our cultural habits, religious practice, and lifeways.

I am convinced that we do not have to be alike to get along, and to be friends and community for one another.  I share the liberal optimism that our cultural diversity is a major strength of our nation.

And yet, when I look at my Facebook feed full of smart and generally justified cultural criticism, demonstrating the myriad ways in which well-meaning liberals don’t fully “get” sexism, racism, disability issues, etc., I worry a bit.  I don’t disagree with it; heck, I’ve written some of it.  I am just concerned that those of us who are optimistic about a multicultural society are not doing the best job modeling how we can all get along.

Today is the Day of Atonement in the Jewish calendar.  As a Catholic, I admire the Jewish tradition of atonement and repentance.  I confess my sins privately to God at the beginning of mass.  That can feel like the easy way out compared to apologizing directly to the people I’ve hurt.

If we’re going to have a successful multicultural and integrated society, though, we are going to need to be good at both atonement and forgiveness.

I would like to observe this Day of Atonement by recalling and apologizing for the times that I cluelessly and thoughtlessly offended my friends’ religious practices, racial and cultural identities, and parenting choices.  I have many friends who are quite differently than me, so I have a lot of opportunities to mess up and make stupid assumptions.  I am often not sure how to take it back, or make it better.  I hope those I have hurt will forgive me, and give me a chance to learn from my mistakes.

I also would like to apologize for the times that I have been impatient, snarky, or sarcastic toward people who had good intentions, and said something I found annoying or hurtful simply because they did not understand my experience or my perspective.  I care about creating community, and I can do better with patience and good will.

I really believe in a liberal society, and my life is richer and wiser for the stories and perspectives and friendship of my diverse community.  In these politically and cultural divisive times, I hope we can find in ourselves shared values of atonement, forgiveness, and reconciliation.  This is how we will show a way forward that genuinely makes room in our nation for everyone.

Playwright Alice Eve Cohen Asks Us to Reconsider What We Think We Know about Pregnancy and Motherhood

“What makes a mother real?” asks writer and performer Alice Eve Cohen in her newly-published play, What I Thought I Knew. In 1999, Cohen experienced the most improbably and bizarrely complicated pregnancy imaginable. Her play is a crystallization of her stranger-than-fiction pregnancy memoir that was acclaimed at its 2009 publication with book-of-the-year awards from Salon to Oprah. Cohen’s saga touches on an amazing range of twentieth-century reproductive history and politics, from the birth defects caused by the drug diethylstilbestrol (DES) prescribed to pregnant women in the 1950s, to surgical approaches to intersex, to “wrongful life” litigation. Through it all, she never lets her audience rest on their assumptions about motherhood…

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I Could Wrestle with my Disability, but I Think I’ll Dance Instead

A year and a half ago, I gained a permanent dance partner. That’s what I’ve decided. That’s how I need to think about the damage to my visual field from an unfortunate multiple sclerosis flare-up.

If I were a filmmaker, I’d show my dance partner as one of the monsters from a Hayao Miyazaki animated movie. My monster is big and bulky and squishy and always there, pressed awkwardly up against my left side. Everything I see on the left side of my visual field, in both eyes, is hazy and squashed, and some is obscured altogether. When I try to look at someone through the monster’s mass, that person’s face is melting. One eye is an inch below where it should be, and that side of the person’s mouth smears into his chin. The distortion is different at the bottom. The monster must be giving me a hug, because he presses everything from the bottom of that side upward and toward the center, so my blurry left hand is closer to my face than it ought to be.

The monster means well…

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Sorry, I’m Disabled. Oh, Wait, I’m Not Sorry, Just Disabled.

“Sorry,” I say, “Sorry, but would you mind giving me the directions again a little slower? I have a visual impairment and I didn’t see which way you were pointing.”

“So sorry, excuse me for bumping you, I didn’t see you there.”

“I’m sorry I didn’t think to get permission ahead of time, but I’m partially blind, and I need to bring in a friend to help me. Would that be ok?”

I apologize a lot these days. Constantly, almost. I became aware of it when trying to explain to my friend–the one who was trying to be my able-bodied helper — why my attempt to get a spur-of-the-moment accommodation didn’t work. “I didn’t apologize and grovel enough,” I muttered, feeling cynical. “That works reliably. I don’t know what else to do.”

My friend was indignant. “You don’t have anything to apologize for. You should be able to describe the situation, and they ought to accommodate you.” That would be nice, wouldn’t it? But it’s not, in fact, how it works…

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If You’re Not a Jerk, Then I’m Not Disabled

This is my fantasy: I’m standing at the Main Street corner in my little New Jersey suburban downtown, waiting to cross the street. As usual, I’m stressed out by the giant SUVs whipping by, oblivious to the crosswalk. But then I remember the “alterations” I made to my ID cane. I whip it out, and it automatically unfolds with a satisfying series of clicks (that part is real, actually). I stick it out in front of me, into the crosswalk. I wait for something to happen. If the next car stops for me, no drama. But if not, it’ll run over my cane, and… POP! “Oh, I’m so sorry, did the razor blade on the end of my white cane damage your tire when you ran over it? I hope it didn’t scrape the paint too badly!”

Oh, that ninja cane! What else can it do? Tune in to the next episode of Disability Avengers to find out…

Ok, maybe I’ve been reading too many of my 11 year old’s adventure books (if you haven’t read Spy School, I highly recommend it). But just think, if my cane could actually DO something, wouldn’t it be a lot more empowering?

I have had a lot of these fantasies in the last nine months, since I lost some of my vision to a multiple sclerosis flare-up…

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