Effy’s Story

By Effy Redman

After a day of high school in eleventh grade, I stand in front of the stove in the small kitchen of the little house my family is renting in a grimy small town in upstate New York, a fork in my hand, and quickly eat leftover spaghetti with tomato sauce from the saucepan. I can’t get enough. I am starving because I skipped lunch, hiding out in the high school library reading a glossy magazine instead of venturing into the cacophonous cafeteria with tables full of cliques I didn’t fit into. The sensation of hunger became familiar, expected. I eat as much leftover pasta as I can, then I wash my hands and mouth at the kitchen sink. The reason I am self-conscious about eating at school is that I have a disability, a rare condition of facial paralysis called Moebius Syndrome, which makes eating, and other things, difficult for me. I cannot completely close my eyes or blink, and I speak a lot like a ventriloquist, without moving my lips. But I was raised to avoid talking about my disability. My parents taught me that it was preferable to act “normal,” like my four younger siblings. So, when I find myself hungry and alone in the high school library at lunchtime, instead of having compassion for the difficulties my disability causes me, I blame my isolation and deprivation on myself, on my apparent lack of social skills.

After drying my hands and face on a ragged tea towel, I press Play on the boom box my parents keep on a high shelf. I listen to a cassette tape of Belle and Sebastian, which one of my brother’s cool friends recorded for him. I love this music. It makes me feel like there is hope for me, although I can’t articulate where or how. Secretly, I wish I could hang out with my brother’s friends. Many of them are Punks, with hair chopped into spikes and dyed cool colors, piercings, Doc Marten boots, and ironic lunchboxes. I see them sauntering down corridors in small groups, acting aloof and refined. I can’t imagine them wanting to get to know me.

In my final year as an undergraduate student at Bennington College, I write a Senior Reflective Essay. In the essay, I talk for the first time about having a disability, what that means to me, although I don’t really know what it means to be disabled yet. Before this night, I have been silent about my disability, governed by its physical limitations yet too afraid of rejection to speak out. But now, after almost four years living away from home, where I was taught, however unintentionally, to act “normal,” I am ready. Distance gives me power. I remember sitting in my room in Stokes House on campus late at night, trying to write. My urge to procrastinate is so strong that I actually tie myself with a belt from a loop on my pants to my chair. It is late and the house is uncharacteristically quiet. I have a bottle of Dr. Pepper—my go-to when I have to pull an All-nighter—which I periodically drink from, loving the strangely familiar artificial flavor and the burn of carbonation in my mouth and throat. This is what I love about writing, this time alone to savor every sensation, to explore the corners of thought.

I forget that I am tied to a chair, that I am slightly hungry, and bone tired. All there is is the keyboard beneath my fingertips and the bright white page in front of me. I write about immigrating from England to America at age thirteen right after having plastic surgery, I write about loss and grief, disability, looking and feeling different. Even while I write, I am realizing for the first time it is all true, and that is the scariest thing. The past year, I have developed romantic interest in several women and, although it will be three more years before I come out as a lesbian, these early stages of accepting my sexuality highlight with astounding clarity that I also need to come out as having a disability. In order to be myself, I need to know myself. I don’t understand yet that this will be a journey. I probably shed a few tears. I definitely stare up at the white ceiling with its oddly shaped eaves more than once. When I finish the essay, just before dawn, I save my work, then crawl into bed fully clothed and pass out. It is the kind of sleep too deep for dreaming.

I wish now I had known this was only the beginning of perceiving my disability, the tip of the iceberg, so to speak. What made me sit down then and begin that journey was that it had finally become impossible for me to pretend I was “normal” any longer. I was beginning to understand desire, and my desire involved not wanting to hide my true self.The memory of taking that first step toward self-acceptance amazes me, because it felt then like a conclusion. However, the opposite could not have been more true. It was, in fact, a point of origin.

On my first day of teaching a Nonfiction Writing Workshop to undergraduate students at Hunter College in New York City, I asked my students to arrange their desks in a circle. It was 2016, winter, my fourth semester as a graduate student. The desks' metal legs scraping across the wooden floor sounded celebratory, like the beginning of something. As I had the previous semester on my first day teaching, looking around at my diverse student body, I felt almost maternal, a kind of responsibility new to me. Large windows at the classroom’s far end looked out over Lexington Avenue, whose festive din of traffic would punctuate our bi-weekly gatherings.

 Once everyone was seated, I stood at my desk halfway round the circle and introduced myself.

"By the way," I said, "I have a disability, a condition of facial paralysis that means I speak a lot like a ventriloquist." My new students were training their eyes on me with benevolent but acute focus. I continued.

"If you have difficulty understanding anything I say, feel free to ask, and I'll repeat myself."

There was a moment of silence. Benign, thoughtful. I asked the students to take turns introducing themselves. In their expressions, I saw compassion, and esteem. I had been nervous in the days leading up to this class, but my new students were completely accepting of my differences. This, in turn, bolstered my confidence. I launched into the semester feeling like I had taken flight. The students’ respect for me as an authority figure, a role model, inspired me to work harder than I ever had before.

The experience of introducing my disability to my new Nonfiction students sticks out in my memory because it deepened my journey into writing my first book—a memoir of growing up with a physical disability. Even while I was trying to teach students how to write nonfiction, I was trying to figure out how to write nonfiction myself, as a graduate student. The layers of learning and teaching, receiving and giving, exposed new truths both in the classroom I walked into and onto the pages I typed. Whereas writing my disability memoir was, at that time, intensely private, casually describing my disability to my new students felt refreshingly public.

I learned that each one of my students had a fierce drive to tell their story, too. I learned that my own story was more vulnerable than I had ever before imagined. For my thesis, I wrote about my body intimately, revealing details of my physical self I wouldn’t even share with my therapist. My graduate school classmates and professors, to their credit, only ever gave feedback and critiques that reinforced the validity of my story’s most vulnerable form. In a manner I never had before, I felt heard.

Sometimes, riding the 6 train packed with commuters on my way to teach two early mornings each week, I felt the pressure of bodies crammed in around me like words crowding my mind before my hands released them onto the page. I had never felt more human.

Some people gawk. They stare at me as though I am an oddity, a curiosity, because I have a facial difference. Occasionally, the gawkers are hostile, but this is very rare. Usually, people are simply wondering why I look different. I typically wait until I am getting to know someone to offer an explanation. I don’t feel that I owe anyone one, not even you. I remember my best friend in middle school telling me that, when I joined the school, there were other students who disliked me due to my difference. I had to prove myself. My friend explained that she had decided to give me a chance. This was in England, where I was born. We were lying on the bright yellow floorboards in my bedroom, near the bay window. My friend was half Black, but we never talked about that. It didn’t occur to me to ask her if she ever felt other, too. Our school was a tiny, private Christian school in inner city Manchester. We were both sheltered at home and exposed to the roughness of inner city living. She was one of many friends along the way who showed me true respect and unconditional love, which I would need in order to navigate becoming an adult. Friendship has always been my sanctuary from any hostility I might encounter in the world.

People talk to me. What I mean is, people make themselves vulnerable to me. I think this is because I radiate vulnerability and receptivity. Regardless of what I think of the people exposing their stories to me, I am repeatedly moved by their vulnerability, by their trust that I won’t judge them, even that I may help them. I have not always been nonjudgmental, though. During my first year of undergraduate college, I met a young woman who had cerebral palsy and used a walker. Though I wouldn’t admit to it, I was repelled by her disability, by her looking different, and refused her offer of friendship. In her, I saw too much of myself for comfort. I lied to her when she invited me to see a play on campus with her, saying I would be busy. I will always regret this missed opportunity for connection.

Several years ago, I spoke on the phone with a dear friend who had just broken up with her long-term boyfriend. She seemed most upset about all the time invested into the relationship. She was in Kentucky and I was in upstate New York, yet the conversation felt close. I told her I was sorry about what she was going through. I couldn’t think of much else to say. My own romantic relationships so far had all been short-lived. I didn’t have much basis for comparison. But I did understand personal loss. The loss of physical ability, the loss of childhood friends due to immigration, the loss of self. On some level, my friend knew this. And by inhabiting the moment centered in her loss, paradoxically, my own loss diminished, because of the comfort of the bond we shared.    

In the small city in upstate New York where I live, on a warm  day this November, I walk down my street. I pass a large brick house with an old walker abandoned on the front lawn. This place is a community residence for adults with mental health diagnoses. And, for a couple weeks in 2017, I lived there. What I haven’t told you yet is that, at age twenty-five, I was diagnosed with bipolar disorder. There is scientific research proving that Moebius Syndrome, and the inability to smile, is linked to depression. Thus, I believe my mental health diagnosis is essentially a component of my physical disability. Living with it, including several nervous breakdowns, has at times disrupted my life and relationships. That’s how I wound up in the community residence five years ago, just half a block from the beautiful apartment where, quite by coincidence, I now live independently. I pause for a moment on the sidewalk near the community residence and study the walker. It is perched on a slight hillock in the lawn so it tilts precariously to the side, as though pushed. The sun warms my face. In the abandoned walker, I see neglect, carelessness, fragility.

At forty, having lost everything then rebuilt my life a couple times, I can say that I am happy. This happiness is more of a baseline quiet satisfaction than anything ecstatic. My bipolar symptoms have been in remission for almost five years, my career is flourishing, and I have cultivated a diverse, supportive community. That said, there are still days when I feel emotionally or physically awful. But even then, I am conscious of being in a good place, a place where I can both work and rest. I cannot take the luxury of peace for granted. A large part of settling where I live has been discovering the local LGBTQ+ community and connecting with fellow queer people. Identity, I think, cannot be limited to a single title. It is essentially intersectional, because humanity is endlessly multi-faceted. For example, I am a lesbian neurodivergent immigrant with a physical disability. But maybe even that example is overly simplified. Doesn’t true identity shrink when we attempt to simply label it?

Although there are some knowns in my future—a book contract, a job contract, community events—I think of it as a blank page I am trying to write onto. Some days, I see the page clearly, it all makes sense. Other days, I need to sit back and stare out my windows holding a cup of coffee, waiting for insight, or at least the motivation to get up off the sofa and start something. Although control is essentially an illusion, I do feel more control over my life than I ever before have, because I have autonomy, which, for me, manifests as the freedom to make my own choices within the fabric woven from a diverse, supportive community. I have access to both the space to breathe and the human connections that help bring my journey to life. As each day unfolds, I remember that reality can be a gift.

Effy Redman is an author and disability advocate based in upstate New York. Her first book, a memoir of living with disability titled Saving Face, will be published by Vine Leaves Press in March 2024. Her writing has appeared in The New York Times and Vice, among other places. This story she is sharing deals with self-acceptance in the face of adversity.