We are beyond excited and honoured to start 2018 talking to acclaimed American poet, essayist and editor; Destiny Birdsong. Destiny has won the Academy of American Poets Prize, Naugatuck River Review’s 2016 Poetry Contest, and Meridian’s 2017 “Borders” Contest in Poetry. She’s had fellowships from Cave Canem and Callaloo among others.
She openly speaks to us about her experience with albinism, her family, writing out her fears and her hopes for young people with albinism
Photo: Hunter Armistead. Makeup: LaRisa Jones
We work in African communities and mostly have an African audience – Your background is different from that of our readers, tell us a bit about your community and how you grew up.
I grew up in the American South—Shreveport, Louisiana, to be exact. It’s not a big city, but it’s also not a small town. I haven’t lived there in many years, but it’s a place I love deeply. There’s something about the miles and miles of flat land, the pine trees, and all the waterways that will forever be a part of my concept of home, even though there are other places that share that moniker for me. Shreveport is an interesting place; it’s not in the part of the state most heavily populated by French-speaking Acadians or French Creoles (whose cultures Louisiana is most famous for), but it is definitely influenced by them in terms of food and other forms of celebration (like Mardi Gras), as well as in how the people around me thought about race and color. I grew up in an African American family where people were a range of colors, and my albinism never made me feel out of place in that regard. There is no general phenotype for us; I was just one color of many. So many of my family members’ nicknames are based on appearance, and particularly color. I have an uncle called “Fat Ear,” another called “Black Boy,” and yet another called “Red Boy.” When I was a baby, my uncles nicknamed me “Honey,” which they thought matched the color of my hair. I spend most of my life away from my family, and something in me starts to heal from the world when I walk into a room and my Uncle Carlos yells: “Honey Bunny!” I love my family for taking one look at me and naming me after something carefully made and harvested, something precious and sweet.
Of course, people outside the safe space of my family still said and did mean things during my childhood, but I was rarely—if ever—made to feel “less black” than others. And, while I was certainly made fun of, I felt physically safe in most of my environments. I do have one distinct memory of being bullied, however, and it was in pre-school. I’ve worn glasses since I was three years old, and this girl who had been hassling me on the playground one day smacked them off. Apparently, that was the last straw: somehow, I got a hold of her finger and bit down to the bone. She was rushed to the emergency room, and I was sent home. I love that story, especially since it’s the one time I got in trouble in school, but didn’t get in trouble at home. My mother knew the girl had been picking on me, and she understood why I retaliated. My mother never condoned violence, but she did give me space to stand up for myself, and she and the rest of my family made me feel like I had the right to do so. I also use this story to remind myself of something that I apparently knew then, but sometimes forget now: I matter, and no one has the right to treat me poorly simply because they feel like they can.
Do you remember when you initially became aware of your hyper-visibility?
There are two distinct moments that come to mind. The first happened when I was perhaps three or four years old, and I overheard my mother tell her best friend that, when she was at the grocery store, shew saw two children who looked like me. I wasn’t there with her, but I remember understanding that, when she said that, she also meant that we didn’t look like everyone else. The other time was a bit later—five or so—when I drew a picture of an imaginary friend named “Samantha.” Samantha had yellow hair and wore glasses, and my mother was touched, but also a little tickled; she showed that picture to everyone she knew. Although she understood better than I did at the time, we both knew who Samantha looked like, and why: I needed to see someone else who looked like me.
How have you navigated your albinism in your writing, what are some issues/aspects related to having the condition, feature most in your work?
This is a tough one, because, like everyone else (I imagine), this condition is one part of my identity, but doesn’t encapsulate the totality of my experience. I write about a number of things: love, sexual trauma, mental and physical health/illness, my family, my belief systems—so, whenever any of those things comes to the page, I let it come. I’m not sure if I ever developed a strategy for navigation. I do think, however, that in recent years, I’ve been more forthcoming about my fears and insecurities in my work, and albinism is certainly a part of that conversation, so I write about it more freely now. But, as I was recently telling a friend, I don’t come to the page with intentions so much as I come with questions, and if I am interrogating something about my experience with albinism and I feel like writing it out, then I write it out.
Oh! Ok, so I do have a caveat. I recently started writing fiction, and I deliberately made my main character a woman living with albinism. My decision was based on a few things. First, my best friend writes urban fiction, and we once had a conversation about how some writers in the genre create heroines who are cookie-cutter tropes: fair-skinned, long-haired, thin—very traditionally beautiful by some cultural standards. As such, these characters easily attract the interest of lovers and they are the darlings of whatever space they inhabit. I can’t speak to the motives of those writers, because I don’t know them or live inside their heads, but my first thoughts were: if these writers create such characters because they believe that a specific kind of beauty is more palatable for readers, and more believable, then that’s unfortunate for us as the audience, but also for the writers themselves (especially if they too don’t fit into that paradigm). There is a certain kind of trauma in never seeing yourself depicted as beautiful anywhere, not even in your own work. So, when I started writing fiction, I made a decision that my narrator would have albinism, and she would be desirable. She’s also really regular-degular (shout-out to Cardi B): she has no superpowers aside from code-switching and humor. I wanted her to be unique, but also just a person—someone you could imagine being friends with and commiserating with and understanding. I rarely see people with albinism depicted as such anywhere. And, of course, since I’m a hopeless romantic, her love interest falls in love with her. Well, eventually—I haven’t written that part yet.
There’s often a struggle between being vulnerable in talking about one’s experience with having albinism, and protecting yourself; how have you balanced being open and willing to educate others, and not feeling too exposed?
I practice one rule in this regard: people can ask me anything, but I reserve the right to refuse to answer. That’s my general rule about most things, and I try to offer that to others whenever I ask them questions about any subject I perceive as sensitive. I think that, as relational beings, we have all, at some point or another, fallen into the trap of assuming that, because we know a person who is privy to a particular experience, then they are conveniently available to provide the narrative of that experience for us. I’m certainly guilty of having done it in the past. However, I’ve learned that I don’t have the right to anyone’s body of knowledge, and they don’t have any right to mine if I don’t want to make it available to them. There are other ways to learn a thing, and to be informed.
There are some people who feel PWA should always self-advocate, what’s your view on this? Should we always carry the responsibility to help educate others?
Absolutely not. For instance, in public spaces, I often get the question: “Are you related to [insert the name of some other person they know who has albinism]?” Sometimes, I want to say “No, because not all of us are related. This is a complex genetic condition that spans ethnicities, countries, and cultures.” However, that is emotional labor, and I reserve the right not to perform it if I don’t want to. Sometimes, I just want to be doing whatever it is I was doing before I was interrupted: shopping for groceries, dining with friends, or taking a walk in a park. To be called to step out of the normalcy of my life to explain something to a person who perceives my body as abnormal, and thus demands that I explain this to them, is intrusive, and I don’t owe them anything. It can also take a toll on my emotional equanimity—especially if they prolong the conversation with follow-up questions, which they often do, and which are almost always deeply personal. I reserve the right to choose when to subject myself to that.
Do you have anyone in your family/community/role models of people with the condition, how did you find this experience?
No, I didn’t, and I was about to say “unfortunately,” but that’s a difficult thing to gauge in hindsight. I also don’t want to detract from the legacy of the people who were there. I was raised in a family of talented, innovative, and fiercely loving black women who have taught me a great deal about how to be a woman; and yet, whenever I hear the following words from Lucille Clifton’s “won’t you celebrate with me,” I always think of coming into womanhood as a person with albinism: “i had no model…/what did i see to be except myself?” In Clifton’s words, I made a lot of it up. I just did my research and/or figured it out and/or kept trying until I got what I needed. In so many ways, I am still doing that.
What words would you like to share with parents of children with the condition?
I don’t have any children, so it’s hard for me to tell any parent how to raise theirs, but I can say that it was—and still is—important for the people I love to give me space to feel what I can’t always articulate, and what people without the condition cannot always understand. There is something about my being hypervisible for every moment of my life outside my house that is both exhausting and exhilarating. I have a few other conditions—anxiety, depression, etc.—that sometimes make leaving the house an act of defiance. That is difficult, but I’m quite proud of that, and proud of the person I’ve become in spite of it. It’s important for the people around me to acknowledge that struggle, even when it looks effortless. I have a lovely family and wonderful friends who ask “Why are you so hard on yourself? You’re beautiful!” That’s important for me to hear, but it’s equally important for them to understand that everyone doesn’t see what they see; and, sometimes, I’ll be sad or frustrated by reactions that aren’t as complimentary, or as kind. If you are raising someone with albinism, give all of their feelings space, even as you remind them that one person’s opinion shouldn’t determine how you feel about yourself.
To young people with albinism, what are you hoping they take away, not only from your story, but their own experiences?
This one may take a bit of time to unravel, but trust me, I’m going somewhere! So, I spent most of the early part of this summer outdoors, which is rare for me: I’m a bookworm and not much of an athlete, and, of course, I burn easily (not to mention the fact that I often forget to wear sunscreen). But this summer, I spent four days at an outdoor music festival, and then travelled with my sister to the Bahamas. All around me were tan, thin, beautiful people, and I felt so self-conscious about my skin. This is unkind, but I literally felt apologetic that people had to look at it and spend time around it. Anyway, a few months later, I developed a skin condition that is temporary, but also incredibly uncomfortable, and it drastically changed the appearance of my skin. Fortunately, it’s finally resolving itself, but in the meantime, I’m realizing that I haven’t been loving my skin the way it deserves to be loved. It doesn’t do what everyone else’s skin does, but it is healthy, for which I am fortunate, and it’s beautiful, period. No caveats. I wish I had understood this earlier. I wish I hadn’t internalized so much of everyone else’s opinions about it. I wish I had known that one person’s recoil doesn’t mean I am unsightly or damaged or worthless. I feel like it’s never too late to change anything and enrich the quality of one’s life, but I wish I hadn’t wasted so much time thinking otherwise.
From their own experiences, I’d say: live your whole life. Albinism is an anomaly that you can’t change, and that may sometimes bring you grief, but don’t try to normalize the rest of your life as consolation for those around you. If you are quirky, if you have interests that differ from people around you, if you think differently from them, hold on to those things. Cherish them. In childhood, they might make you the butt of someone’s joke, or the object of ridicule, but hang on to them. Those opinions change over time, and in adulthood, those traits could make you an artist, a millionaire, an inventor, a world-changer—we won’t know if those parts of you don’t survive. Also, celebrate your albinism. As part of my faith practice, I believe God specifically made me to be myself. He determined my tastes and my cravings, my talents and challenges, my complex desires, and who and what I would come to love. Albinism was part of that plan. It too has its purpose, even though I’m still figuring out what that is. How wonderful it is to think that, years before I would learn to smile or wash my face, God set the bones in it to look like my mother’s and her mother’s, then covered them with a different skin. Then, He set my eye color to match my father’s, though they move differently. I’m no admixture of anything. I am a body curated from my ancestors, but also completely different from them. I can’t say I’m always happy about it, but I can say that, fragile as it often is, my body has survived. So has yours. Every cell in our bodies is narrative and counternarrative, plot and plot twist. We are also vulnerable, but we are also brave enough to be so. That is something worth celebrating.
Photo: Noelle Théard