You know me by my face, and you never knew me in any other way. Therefore it could not occur to you that my face is not my self.
What I fear most when I face the world is that one’s knowledge of me will begin and end with my face.
I was born with paralysis of the cranial nerves, which are responsible for controlling expression. Studies Studies of this condition, which affects approximately one in one-hundred-thousand live births, characterize the faces of those affected—my face—as “dull, unfriendly, and mask-like.”
People on the street who notice my open mouth sometimes apologize for startling me. Others think me sleepy and say teasingly, “Don’t you know yawns are contagious?”
One wide-eyed little boy at the coffee shop where I once worked leaned over the counter and whispered, “Do you not like going to the dentist? Sometimes, it doesn’t hurt.”
Most people, though, say nothing; most only stare.
I’ve spent what probably amounts to years of my life trying to cover my face with my hair, my hands, a book, or newspaper.
But the face, it seems, is the hardest body part to hide.
Today, I am meeting with a man who cannot see my face.
Todd Bauer was diagnosed with macular degeneration when he was just eight years old. Legally blind, Todd can only identify color families and see contrast. For his work—as an accountant and a playwright—he must use a computer with an oversized monitor and a black keyboard printed with white letters. He relies on software called ZoomText, which allows him to significantly magnify the images on his screen. To read, he guides a four-by-four inch camera-like device over the page, and the enlarged words are projected on a closed-circuit television in front of him. He has not been able to recognize faces in nearly two decades. At movies and plays, his wife whispers to him any visual cues he would otherwise miss, including facial expressions, subtle gestures and the movements of small, key props. He has never driven a car. He has never seen his niece’s smile. He has, on occasion, not realized when his wife was crying.
I first heard about Todd when he directed a series of Harold Pinter one-act plays through the Access Project at Victory Gardens Theater in Chicago. Under Todd’s direction each scene was first performed with the menacing character played by an able-bodied actor and the victim a disabled one. Then, the scene was immediately performed again with the roles reversed. I attended this performance three years ago, and while I don’t remember any specifics about the scenes themselves, I acutely remember the discomfort of openly staring at disabled people. Here were individuals who, like me, looked different, but were—by climbing onstage—saying: “Look at me. I want you to look at me.”
And for once I was the one looking.
Todd and I are meeting at a hip little coffee shop, its walls painted purple and orange, on Chicago’s northwest side. I arrive first and pretend to read my book, but my eyes are slit upward, watching the door. As soon as he walks in, I call out to him, “Todd!” so that he’ll hear where I am.
Although we’ve only met once before, we hug each another warmly. Collapsing his white cane and setting it at the end of the table, Todd takes the seat across from me. A handsome forty-six year-old, he is the kind of bald that looks somehow regal, which he pairs with a neatly trimmed goatee and an inviting smile that makes his eyes squint. He has an athletic build and dresses like a professor in a button-down and blazer. Looking at him, I wonder what he sees when he looks towards me. From the little I’ve read about his disease, I imagine that my face is a roundish, light blur, hovering over a slightly darker body blur.
As he settles in and we exchange pleasantries,it occasionally feels—although I know it’s impossible—as if Todd has found my eyes with his. His blindness is easy to forget. A waiter approaches our table and stands there expectantly. Todd finishes his sentence but then starts a new one without pausing, and that’s when it dawns on me that he cannot see the waiter, who is now confused and uncomfortable. I interrupt gracelessly. “Sorry, Todd,” I say, “but did you want to order something?”
Unfazed, Todd asks for the soup of the day. Noting that his choice eliminates the need to read the menu, I wonder how often he orders the daily special or if he even likes soup. Before leaving our table, the waiter’s eyes rest momentarily on the white cane.
Apart from small moments like these, Todd, unlike myself, has lived most of his public life with the freedom of an invisible disability. He may not be able to control his impaired eyesight, but he can dictate whether or not and to what degree it is seen.
How We Are Seen
“I chose to have an invisible disability for a long time,” Todd explains. “That changed when I went to a workshop where the lesson was to take something in your life that you view as a burden and turn it into a gift. For me my central issue, my core wound, is disability. There’s really no way that you can halfway embrace that if you’re going to make peace with it.”
The tenderness of the phrase “core wound” pulls to mind my earliest memory.
I was in preschool. I was wearing a pink sweatsuit, the top and bottoms perfectly matched. But something about the waistband of my sweatpants or perhaps my underwear was bothering me. I reached down and adjusted whatever it was.
“Sarah!” My teacher’s voice snapped sharply, “Get your hand out of your pants!”
I looked up bewildered to find everyone’s eyes on me. I felt like my small body had been placed over a high flame.
In that moment I learned to connect hot obliterating shame with being an object of gaze.
“It’s only been recently,” Todd tells me, “that I’ve started using the white cane, because that was a huge psychological deal for me. It was past the time when I”—he gestures air quotes—“‘should have been using it.’ So far, though, it’s been really good.”
“How so?” I ask.
“Well, in the past,” he explains, “if I accidentally walked too close to someone, they would react like, ‘Hey, jerk what’s your problem!’ And that would create double anxiety in me, because I don’t want to be viewed as a jerk, and the only reason that I was walking too close was because of my stupid eyesight, which would trigger this downward spiral. Whereas when I carry the cane, everyone is bending over backwards to help me and I think, ‘Why wasn’t I doing this a long time ago?’”
Todd and I both know the answer to that question, but neither of us says it aloud. Even though Todd cannot see the stares that his white cane draws, I have no doubt that he can feel them.
Todd tells me about a friend of his who is a Thalidomide baby.In the late 1950s, Thalidomide was prescribed to pregnant women to treat morning sickness. It was withdrawn from the market in 1961 when it was found to cause birth defects. This friend is a tall, strikingly attractive man with dark hair, chiseled features, and two infant-sized hands sprouting from his muscular shoulders. Once the two men were waiting for the El train, and a woman standing next to them stood openly staring at Todd’s friend. Accustomed to this behavior, the friend wasn’t bothered by this. What bothered him was when he turned and smiled at the woman and she immediately looked away, refusing to meet his gaze.
“That’s when he got angry,” Todd says. I nod unsurprised. I’ve had nearly the exact experience so many times that I cannot pinpoint specific examples; what I have instead is a montage of briskly turning heads.
It is not the staring that I fear. What is much worse is the looking only to look away.
Riding the train to work one day, I watched a man standing in front of me turn to the woman next to him and say, “Wheweeee! She must have had a rough night.”Most of my examples of being objectified through gaze occur on the Chicago Red Line. I spend a lot of time on public transit and people on the train need somewhere to look; I am a good distraction.
The female passenger removed her headphones and said, “Sorry, I didn’t hear you. What’d you say?”
“Oh, nothing, just that—well, you see that?” he nodded at me. “I was just looking at her. Someone’s been out partying all night.”
I’ve heard variations of this before. My mouth ajar, paired with my that involuntarily drift to half-mast, can appear drug-induced. A group of teenagers on this same train line once had an animated argument about whether I had fetal alcohol syndrome or was a heroin addict. A bartender once refused to let me drive home because I “couldn’t keep my eyes open,” and when I assured her that I’d had just the one beer and that my eyes were “just like that,” she threatened to call the cops.
The female passenger stared at me for a moment, then two. My hair was freshly washed and pulled back. I was wearing a button-down tucked into a brown skirt, matching tights and a cardigan. Before slipping her headphones back in place, she said to the man, “I don’t know. I can’t tell. Something’s not right”
Staring out the window, I felt near vindication—as if I had been on trial and found not guilty by reasonable doubt.
During our conversation Todd keeps using the word “gift.” Every time he says it, my brain squirms and my schmaltz alarm blares. Tentatively I press the issue.
“I worry about sounding sentimental if I write about this stuff,” I say. “I’m uncomfortable with words like ‘gift’ or ‘special.’”
“Oh, I hate that!” Todd cries with genuine disgust.
I sigh, relieved.
“I hate the idea of the ‘noble gimp,’” he says. “I hear this all the time in different interviews that are done. The [interviewer] asks, ‘Well, given the life you’ve had would you choose to be not disabled or disabled?’ and the person [being interviewed] always says, ‘I would choose this.’ which is—”
“—bullshit!” I cry.
“Bullshit,” Todd agrees, “because A) it’s an act of cowardice and B) I think the main reason that they manipulate people into saying that is that it eases their guilt.”
Todd’s food arrives. He thanks the waiter but pauses before he begins to eat.
“I’m on a path right now towards making peace with my disability,” he explains, “but you know what? No! If it comes down to it—no! There are so many things that I would love to be able to do but I can’t because of my eyesight.”
I watch Todd pick up his spoon and taste his soup. I wonder if it needs salt. I wonder if he can see that there is a saltshaker resting just to the right of his arm.
“I haven’t made eye contact with anyone in almost twenty years,” Todd tells me. The enormity of this statement makes me catch my breath.
Blindness creates tangible losses—both small and staggeringly large—that quantifiably limit how Todd experiences the world. For me the consequences borne from compromised facial muscles are less cleanly identifiable. The things that my misshapen mouth cannot do are relatively silly: I cannot blow up a balloon or rip a piece of duct tape using just my teeth or whistle or play a reed instrument. I can’t bite through crunchy food without using my hand to support my lower jaw. Things like smoking or kissing are never thoughtless, easy acts. And that’s essentially all I lose: a lack of ease. I lose the ease of speaking and expecting to be understood. I lose the ease of walking down a street and blending in. Many of these things, though, I only perceive as challenges or losses because I feel threatened by the eyes of strangers. How much of my disability is tied up in fear of perception, and how much of it is a reality? The fact that I grapple with this question clarifies why I have never wholly accepted the term “disabled.”
Is there another term that more aptly fits me? Physically impaired? Physically challenged? Handicapped? The very precious “differently abled”? Or the abrasively brazen “crippled”? To choose a label is to identify not only by my limitations, but also to identify by something that I have all my life categorically denied even acknowledging.
Listening to Todd, it occurs to me that the reason I am—at almost 30 years old—finally writing about these issues after allowing them to go unspoken for so long has very little to do with “disability” and everything to do with being seen.
As Todd takes a sip of his water, I begin to tell him about how I’ve never felt fully comfortable within the disabled community, but then sharp moments—stares mostly—remind me that I will never be a seamless part of the able-bodied world either.
“Why don’t you feel you’ve ever been accepted within the disabled community?” Todd asks.
“I don’t know really,” I reply, “maybe I’ve never felt as disadvantaged as they were.“
“Not disabled enough?” he asks knowingly.
“Enough,” I repeat. The word feels right. “Yes. I’m pretty much fully functioning. I can’t do little stuff. I can’t speak clearly, but is that enough?”
“That’s clearly your issue,” Todd says, and the bluntness of this statement feels like a slap. “I remember when I was younger feeling that way too,” Todd continues, blithely “as if I walked among, but not of any group. But it’s also a matter of not spending enough time within the community. I would be shocked if you end up spending time within that community and you don’t end up feeling accepted.”
“My sister and I went to a conference once,” I explain, surprised at the defensiveness in my tone, “for people like us with facial paralysis. And I still didn’t feel like that was my community. Most of them had a lot more severe issues than I did, but also socially because maybe they had been isolated or chosen to isolate themselves, many of them did not know how to interact with other people in the way that I’d learned. So even being around those who looked more similar to me than anyone else I’d ever met, I didn’t feel as if I belonged.”
As I am saying this, I hear Todd’s previous statement bang in my eardrums louder and louder: this is clearly your issue.
Instead of pointing this out, Todd generously begins to discuss various support groups that he’s attended at an advocacy organization called Access Living and the necessity of recognizing you are “not alone.” As I write check out support groups in my notebook, I, ironically, catch myself thinking, there aren’t support groups for people like me and then, Jesus Christ, Sarah, you’re not a precious fucking snowflake.
Todd is in a very good place in his life right now—happily married, securely employed, and enjoying increasing success in the theater world with one of his plays recently landing a reading at The Kennedy Center. But decades ago, just out of college, his world changed so drastically in the move from a small town in Ohio to the big city of Chicago that he languished, bitter and depressed. He was upset with his dating life and his professional life. Reflecting on this time, he admits: “So many times when I was unhappy with different aspects of my life, I laid it at the feet of disability.”
Watching him listening to me, it feels as if Todd finds me at turns aggravating and endearing, as if he is measuring my words in order to determine how far he has grown.
As the evening progresses, Todd pushes aside his soup, unfinished. He begins, slowly and thoughtfully, to backpedal on his previous statement that he would rather be sighted. He admits that he has felt a shift since enjoying more and more success with his playwriting.
“My life,” he says, “ is all of a sudden pretty good. So, if given the two doors to choose from, rather than jump at the unknown, I feel like right now I might hold off a little bit. It’s not like you just give up the disability,” he says “you also give up everything that comes with it.”
Sitting across from Todd, I keep thinking about what a friend of mine once said to me. Adagio, a fellow writer, invited me over to her apartment one night, and we ended up on the roof-deck of her building, splitting a bottle of wine. As we sat side-by-side, looking out over the city lights, she asked me what I was writing and what I planned to write in the future. I told her about a couple of potential pieces. She seemed unimpressed.
“Do you ever plan on writing about your disability?” she asked.
Stunned, I said no and then stammered, “At least, not yet.” I told her it felt limiting but also like cheating.
She looked right at me and said in a tone that was calmly prophetic, “Sarah, you’re sitting on a goldmine.”
I turned away from her and started to cry.
I have never identified as my paralysis, but I am slowly admitting how much of me is tied up in it. What would I give up if I was able to make it disappear?
“People always recognize me,” I say to Todd.
“I won’t,” Todd replies with a wicked smile, and it feels nice to laugh together.
“Right,” I say, “but other people, sighted people come up to me on the street, and they’ll be surprised or even hurt when I don’t remember them and I just want to say, ‘Oh, come on! Give me a break! I’m much more memorable than you.’ ”
Todd laughs, “Yes! I really regret that I didn’t start using my cane before for very pragmatic, artistic reasons. I know that I am remembered more now within the theater world— ‘There’s that blind playwright!’ I’m not going to get any readings or productions because I’m blind; they’re not going to compromise on that level, but let’s face it, the more you can be remembered, the more it helps you.”
He looks towards me, bemused and knowing. “It’s a long road,” he says. “For disabled people, everything goes back to disability. Everything goes through disability. All of it is going to add up to make you say, ‘I do choose my life,’ or you’ll have to keep working at it until you do.”
“I’m still working on it,” I say.
Todd’s first play was extremely autobiographical and in his words “terrible.” However just this week, he thought about revisiting that material.
“Now I’m better equipped,” he says. “I definitely think it has to do with that awareness of not meeting the disability halfway. It’s either all or nothing.”
The waiter clears away our dishes and asks if I need a refill on my coffee. I shake my head no.
“Here’s an interesting thing—for both of us, I think,” Todd says, once the waiter leaves. “I can’t see your face. To be honest, I’ve been sitting here this whole time wondering, but resisting saying, ‘Describe your face to me.’ ”
I let out a nervous laugh. Instead of answering his question, I say, “No one has ever asked me that before,” and then, lamely, “I don’t have full use of my eyes and mouth.”
As I say this, my words strike me as deliberately vague—the most anti-visual description I could have given. Here is a blind man asking me to use my language as a substitute for his eyes, and I am refusing his request. Do I not know how? Do I lack the language? Or do I like the freedom, however temporary, of being faceless?
Whenever I catch my face in a mirror, I am startled by it—even at twenty-eight years old. But if I sit with it long enough, all alone, if I linger on my features, I begin to savor the oddity of them. I can and I have fallen in love with the way I look, as long as I look long enough. When people on the street call me ugly, I tell myself that if they had the time, the inclination, the investment, they’d take it back. They’d apologize. My beauty, I assure myself, would grow on them if they’d let it.
Ever since I was a teenager, and still today, if anyone were to ask me how I wanted to be seen, I would be able to answer in one word: effortless. I know that this is all I want because it is the opposite of what I feel that I am—an unavoidable challenge. The face, it seems, is the hardest body part to hide.
Nancy Mairs, an essayist who was diagnosed with MS when she was in her late 20s, explains in “On Being a Cripple”:
Along with this fear that people are secretly accepting shoddy goods comes a relentless pressure to please—to prove myself worth the burden I impose… In our society, anyone who deviates from the norm had better find some way to compensate. Like fat people, who are expected to be jolly, cripples must bear their lot meekly and cheerfully.”
Mairs’ sentiment is something I’ve internalized and further complicated by my shameful slavishness to stereotypes about being a woman. I might balk at identifying as disabled, but I unequivocally identify as female; unshakeable from my experience of womanhood is a “relentless pressure” to be something attractive to look at.
“For you having a visible disability,” Todd says, “it’s even tougher the fact that you’re female, because women are so judged. For men too, I can’t do a lot of the masculine things that men are expected to do. Like when I was dating it was a big issue that I could never drive, because the man is expected to be able to pick someone up for a date.”
Despite our intellectual contempt for conventional gender roles, Todd and I both crave to fulfill them. I do not leave the house without putting on make-up, I avoid eating crunchy, drippy, and slippery things in public, and it takes a lot of silent cheerleading for me to feel confident enough to speak in groups larger than four. Likewise, Todd refused to use his cane for fear that it emasculated him with its implication that he was weak and unable to protect himself and the ones he loved. Once again, it seems it is not the disability but the perception of it that generates the disability’s impact upon the self. But this fear—that we are not perceived as we perceive ourselves—is not exclusive to Todd and me.
I resisted writing about or even acknowledging my paralysis for so long because I found it limiting; who would relate to such a particular and unusual set of circumstances? But, perhaps, it is after all my “goldmine,”not because it sets me apart, but because it doesn’t.
Look at Me
With the waiter having long since cleared away Todd’s dishes, I ask if he needs to get going. He shakes his head no and says kindly, “I’ve got nowhere else to be.”
I am overwhelmed with gratitude when he says this. I know vaguely where this conversation is headed, but I don’t know how we’ll get there.
“What an interesting decision,” I say, “for you to choose theater—such a visual platform—for your writing.”
“That was one of the problems with my early work,” Todd recalls. “[My plays] were too verbal, too talk-y. A lot of my revising now is cutting back—consciously stepping back and saying, ‘Do I need every word in this sentence if I imagine what an audience member can see?’ What I tell my students is that plays are not written to be read, but performed.”
Todd begins to describe for me his process in writing, pointing to his most recent play, The Bird Feeder Doesn’t Know, as an example of the slow, essential progression of letting the characters take over and become real people who speak for themselves. Listening to Todd, it is obvious that he deeply cares for his characters and wants the audience to care for them. He reminds me how good theater can convey the importance of empathy more acutely than any other art form by creating a world with actual human beings, in the same room as me, sharing the same air as me.
The barrier between how Todd and I and his friend with the infant-sized arms all want to be perceived, and how we often hurtfully are perceived emerges, I believe, from a lack of empathy. How does one learn empathy? And how does one lose it?
In his part memoir, part scientific case study About Face, Jonathan Cole writes:
Their faces are the first part of the body that [babies] take an interest in controlling, not just to suck, but to express… Through imitation a face can be assimilated from visual experience, through proprioception, into felt experience: something can be taken from being “out there” in another, to being in me. Certain faces can then be given a context; faces look like what the infants feel themselves to be…if we are born alone it is through the face that we first experience things out there that are like us…
So, we learn empathy from the face? Yet with my paralyzed muscles—my “mask-like” face—I am unable to respond to others’ facial expressions in kind. I can empathize but am unable to visually convey that I can. Because of this I have sometimes been misinterpreted as cold, distant, detached. Ironically, those who know me best worry that I can be overly empathic—that I can be, in fact, sensitive to the point of paralysis. Thus empathy hinges upon not the looking but what come next, what one chooses to do with what it is seen.
With jangly nerves, I finally ask Todd, “What do you see right now?”
“I can see contrast,” he says. “I can see a blur where your face is, and I can see colors—a little off, perhaps. I think your shirt is like a turquoise or blue. It ends just past your elbow. I can tell where your hair is, generally, but it fades in and out. The wall behind you is orange and there is a picture on it, of a rooster, I think.”
He’s right; there is a rooster on the wall behind me, but my shirt is grey, not blue. This small error makes me feel oddly free. I finally take a bite of the chocolate-chip cookie I ordered before Todd arrived. When the waiter brought it to the table, I was annoyed to see it drizzled in chocolate syrup and had pushed it aside. Now, after one bite, I wipe my teeth with a napkin because my weak, foreshortened tongue cannot adequately clean them. The cookie’s edge is crunchier than I’d expected, so I have to use my left hand to push my jaw up to complete each bite. Typically, I’d hide this action behind a napkin held over my mouth, but because Todd is still talking and I am still jotting down notes, I am one-handed, exposed. But I feel safer in doing this now that I know he thinks my shirt is blue.
As I messily eat my cookie, Todd tells me that in order to see someone’s face he must get “nose to nose” with that person and then, maintaining that fractional distance, move from one quadrant of the face to the next and the next in order to “see” all of it. Todd admits that although he wants to do this all of the time, he doesn’t. Even with very close friends whom he has known for years, he often feels weird or guilty for asking. He worries it will make them uneasy. He worries he will frighten them away.
A study on facial expression contended that most humans only experience uninterrupted mutual gaze at two specific times in their lives: when they are infants and when they fall in love.
Two weeks after telling my partner that I loved him, we were lying next to one another in the dark. He gathered me close and asked the question that I had been waiting for:
“Why are some of the muscles in your face paralyzed?”
I took a deep breath and told him what I knew, my tone apologizing for how little that was.
He nodded and pulled me closer.
“Can you feel it,” he whispered, “when I touch your face?”
“Yes,” I said.
He touched my eyelids.
“Yes,” I said.
He touched my cheeks, my chin, the narrow place between my nose and upper lip.
He touched my mouth.
I breathed into his touch.
In the twenty-seven years between being an infant in my mothers arms and falling in love, the idea of a stare and how I was seen through that stare became a palpable threat, one that I had to brace myself against every time I went out into the world. Now in love, I am un-learning and re-learning, trying to recalibrate my brain in order to feel gaze as, perhaps, a goldmine.
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