Esther Rosi-Kessel: People are multifaceted. We all have the things that make up our identities, whether that be our culture, our race, our gender, our interests, our beliefs, or really anything else about us. But learning to accept all those aspects of our identities can be more difficult than one might imagine. Hello and welcome back to Albinism More Than Meets the Eye, a podcast that explores the realities and lived experiences of people with albinism.

I'm your host, Esther Rosie Kessel. Today I have the honor of speaking with Natalie Devora, the author of Black Girl White Skin, A Life In Stories. In this episode, we'll be discussing the implications of albinism on forming a sense of identity and how having albinism shapes how people with albinism view themselves and the other facets of their identity.

And now let's hear from Natalie Devora. 

Hi! Welcome to the podcast. I'm glad you're here. 

Natalie Devora: Thank you . 

Esther Rosi-Kessel: So can you just introduce yourself to the audience, tell them a little bit about who you are and what you do? 

Natalie Devora: Yes, of course. So my name is Natalie Devora . I am an author of the memoir Black Girl White Skin, A Life and Stories, and I am a full-time writer.

Prior to my writing career, I worked in the field of early childhood education. 

Esther Rosi-Kessel: So, Your book is about your experience growing up as a Black woman with albinism, and so how do you think that having albinism has impacted the way you view the rest of your identity, whether that's your race or just anything about who you are as a person?

How do you think Albinism has played into that? 

Natalie Devora: Well, I would say what people see first when they encounter me is they see albinism first. And that was certainly the case in my community growing up. You know, it was a different time. And we used different language to describe albinism and we used the word albino.

And so typically that was how I was perceived as that albino girl. And over time, As I grew in age and in a life experience, what I came to understand is that it is important to meet that I see myself beyond albinism. And so that has had a drastic or certainly monumental impact on how I perceive myself in the world as in regard to all my identities.

I. am A woman with albinism and I am a Black woman. I am a woman with albinism and I am a queer woman. There is always the "and" in it, you know? 

Esther Rosi-Kessel: Yeah. I think when I was younger, I kind of felt like having, you know, multiple identities as everyone does. I, I kind of felt like, oh, I'm, I have albinism. And I'm Jewish.

And to me, one of the things that felt very important was that I'm vegetarian cause my parents like raised me vegetarian. And so as like, you know, a first grader, that seemed like a huge thing cuz I didn't know very many other people like that. So it can be a little isolating to feel like you're the only one, but then you do realize at some point that everyone has their own, you know, intersectional identities and things that make them who they are.

And I'd like to share a quote that I really liked from your book, from when you attended the NOAH conference. "I believe the biggest thing I came to see initially was the individuality within the group poll. We all have albinism and we all are uniquely ourselves. We look similar, and yet our features are characteristics are our own. When I was young, I used to think that if I were in a crowd of several hundred people who looked like me, I could blend in, I can be in. Well, I would always be me. I understood I would never be invisible again." 

I kind of got the same impression when I went to the NOAH conference for the first time this summer, and I wrote about something along the lines of that actually for my college essay.

Can you elaborate a little bit on the idea of visibility or invisibility? 

Natalie Devora: Absolutely. I feel that in my day-to-day life, I have a certain amount of blending in, certainly within the neighborhood I live in and in the city I live in. You know, like my neighbors don't really get that I'm Black , you know, and that's fine.

Their perceptions are, are none of my business, you know, and when it comes to albinism and being a part of the albinism community, I am always going to be all those various aspects of who I am and I, I think that that's really valuable to understand because sometimes I feel like, especially within the cocoon of a NOAH convention, for example, that here's all this sameness and.

You know, in one place and how exciting that is and how overwhelming it can be and how exhilarating it also is to realize like, oh my gosh, I'm a part of this community and. The other piece of that for me is like, oh, I remember being at the first conference and realizing like, yes, I have albinism and, um, how wonderful it is to be here.

And some of these workshops don't speak to my experience. And so I was aware of that and, and, but definitely propelled me forward to be able to then ask like, why are, why is there no programming for the LGBTQIA community? Why is the, you know, where. Is a people of color, you, you know, I, it's like really incorporating all these different aspects and bringing them into the space of people with albinism.

Esther Rosi-Kessel: Yeah. And also today they have NOAH connections. They have like the BIPOC NOAH connections and the LGBTQ NOAH connections. I've been to the LGBTQ one, but it's a relatively small group, unfortunately, and it's also not great with my schedule, so I don't get to go very much. It is really interesting to get to see this like very, it's almost like a niche community because albinism is already like 0.01% of the population, right?

And then you go farther and you say, Just the LGBTQ community, which is, you know, another subgroup. Right. And I, I dunno, I think it's an interesting experience to just see that like very niche community, but it is also like really amazing to know that like, you know, you're not the only one. 

What has it been like for you to finally get to meet other people who have similar identities to you, either through NOAH or through any other kind of experience? 

Natalie Devora: Well, I, I really wanna speak to one of the things that, that, that happened for me with being a part of NOAH , um, and attending a couple of conferences. It took attending, I think two conferences to figure this out is then that I met a core group of women with albinism who, you know, were all women of color with albinism and we realized that we had connection beyond albinism. We had professional connection, we had different, you know, similar interests and things like that. And out of that has come this lovely, lovely friendship bond with these women. And we've had, sort of pre pandemic. We had a girls weekend where we all met up in Las Vegas, you know, which was awesome.

We do zoom calls with each other, you know, we check in on one another. It's that whole piece of, here I have this community within a community where just one part of it is about albinism. And honestly, that feels sometimes like a small part given all the other pieces. Um, and, and ways that we connect with one another.

Esther Rosi-Kessel: I was recently watching this podcast, uh, Life with Albinism. It was one of the episodes they recorded at the NOAH conference. And one of the things they said was that like being around a lot of other people with albinism breaks down that little icebreaker of, if you see someone on the bus or something and you see someone with albinism and you're like, oh my gosh, you have albinism too.

And that's, that's gonna be like the first thing you talk about. When you're surrounded by other people with albinism, you know, you can't, that can't be your conversation starter. So you get to have almost deeper connections because of that, you go beyond that initial connection. 

In your experience, do you think people have changed the way they view you either as a woman of color with albinism or just as a person, do you think they've changed their perspective on albinism or have they just, cause you said earlier a lot of people don't really understand that you have albinism and that you're Black . Do you think people have shifted in their understanding of that since you were younger?

Or if not, what do you think needs to change? 

Natalie Devora: Well, I would certainly say that it has shifted, but first and foremost, the shift had to happen with me . So it's about being able to understand that, you know, it's like looking at life through like a prism and there's so many different aspects of who we are within that prism.

And so I needed to get to that point first. And, because I would say because of the work I have done, in writing about albinism in traveling and educating my friends, my community, and then the writing goes out into the world at large. The people who are closest to me have a better understanding about albinism and about the nuances of understanding that simply because I don't possess any pigment, doesn't take away from all the other aspects of who I am specifically about, like how I, I also identify as a Black woman, and being able to walk into those spaces, sometimes of like Black only spaces. And to be able to feel, you know, confident, first and foremost walking into those spaces.

And now with the people in my life, I don't, if someone says something that's not appropriate or makes a judgment, I'm not the first one to say anything, but it's the people in my life who go, wait a minute. That's not acceptable. So again, it's about having created allies, you know, that matters a lot. And, and so how over time, you know, like that wasn't even a thought process, say, you know, in my teens and early twenties, I was simply trying to figure out who I was as a person first. You know? And I also believe that because there's more information in the world about albinism, we are much more visible through different platforms that has created the ability for people to expand their understanding and their their thinking.

Esther Rosi-Kessel: And you did talk about in your book , you talked about going to a writer's workshop for black writers, and you had someone write a piece sort of thinking that you, you didn't belong there. Can you talk a little bit about that? 

Natalie Devora: Yes, I've, you know, what I really remember most is that I felt incredibly uncomfortable and I felt personally attacked.

And all I could think is at that time I still had self-talk in my head about like, oh, do I really belong here? Is this okay? And I remember wanting to leave and I didn't. And in turn ended up writing something in response in the moment and then reading that to the group. And upon doing that, one , it was a way for me to really stand up for myself. And two, the way for me to just be able to educate people really quickly. 

Esther Rosi-Kessel: If you were talking to someone who was struggling to accept having albinism and feeling different from others, what would you tell them? 

Natalie Devora: Hmm. That's an excellent question. I think I would first and foremost just have a moment of silence with them and just having eye contact as much as possible with them in the moment. You know, given the nystagmus and all of that, you know. 

And then being able to say like, it's really lovely to get to be who we each. And it's a process and, and really being able to articulate, it's, it's a process in being able to accept ourselves and in, and to be able to love ourselves. We don't, we don't come into the world with that.

We don't wake up like that sometimes every, every day. But it's an opportunity to just say, it's okay to be who I am. And, you know, and it's just that, that acknowledgement. Like, yes, it's stru. It's a struggle right now, and it won't always be a struggle. 

Esther Rosi-Kessel: Yeah, I think that's a really great answer.

Thank you. And my final question, which I'm asking everyone is, what is one thing you wish more people knew about life with albinism? 

Natalie Devora: I would say the amount of life hacks we have, or that we have to incorporate, sometimes seemingly unconsciously, every day. People have no idea. All the work around that people with albinism create for, for that we create for ourselves.

And it, how we navigate might seem effortless, but that doesn't come without having to think things through, having to really determine what's, what's gonna work best for me because that might not work for you. 

Esther Rosi-Kessel: Yeah, no, that's, that's definitely... one thing that I've noticed, sort of related to that is I can, because there's so many things that I can't see clearly, I've become really good at like seeing, like for example, if there's very small text or very blurry text, I can read very blurry texts because I'm used to not being able to read like normal texts clearly.

So sometimes, Teachers will have very bad photocopy of something and I'll be like, oh yeah, I can read this. And everyone else's, like, what are you talking about? But that, that's like, I don't, I don't know if that would be like a life hack, but it's, it's just something I've subconsciously developed just because of my vision specifically.

And there's a lot of other things like that. 

Natalie Devora: Yeah. No, I would call it a life hack. Absolutely. Or, or a superpower. 

Esther Rosi-Kessel: Yeah. So thank you so much for talking with me and. I hope my audience check out your book. 

Natalie Devora: Well, thank you for having me and just sort of regarding the book, it's actually in the process of becoming an audio book, so that's going to open it up to a new demographic, new audiences, and it's giving birth to the book again and letting it be in the world in a different fashion.

Esther Rosi-Kessel: Thank you so much. 

Natalie Devora: You're welcome. Thanks again. 

Esther Rosi-Kessel: I hope you enjoyed this episode of Albinism More Than Meets the Eye. Again, that was Natalie Devora. For more information about some of the topics we talked about in this episode or to read a transcript, check out meetstheeyepodcast.com . If you enjoyed this, please leave me a comment or a review.

I'd love to hear from you. Thank you for listening!