Photo by Walela Nehanda (They/Them)
**Content Warning: brief mentions of abuse**
This article will highlight the moments when the CW is relevant, but regardless, please read at your own discretion.
Welcome to the fourth installment of our Disability Pride Month Spotlight series. In this article I will be highlighting Walela Nehanda (they/them), a Black nonbinary writer, poet, and cultural worker. Throughout this interview, I found myself learning so much, whether it be Black history, how broad the asexual spectrum is, or some fun fact Walela had in their pockets. I was honored to get to sit down and talk to them about their experiences, including being a cancer survivor, or as they say, warrior, as well as becoming unhoused at the age of 22.
We were able to talk in depth about many issues within and outside of the disabled community, as well as touch on the impact intersectionality has on our identities, experiences, and the way we both perceive the world. It was a joy to experience!
Giulianna Vicente: Please, if you could take it away and introduce yourself.
Walela Nehanda: My name is Walela, they/them pronouns. Cultural worker, writer, poet, explorer, – I’m very curious about everything – community organizer (I do not do that at the moment). I have done a lot of advocacy work online, I just don’t realize that I do it. I’m born and raised in Los Angeles, also known as Tongva territory, and I live in my apartment in LA. There’s a lot, so I think that’s a good starting point for “this is just me.” I have a dog who’s about to be four and I’ve raised her since the beginning and she’s a mess. Her name is Riley…that’s really my life at the moment.
GV: What does cultural work entail for you?
WN: So I always referenced this essay, Devyn Allen Springer wrote a piece on Medium called “Cultural Worker, Not A ‘Creative’,” and that was back when everyone was like “I am a creative, I’m doing creative things” and it was supposed to be “Art-ivism.” With being a cultural worker essentially, if you look at the Black Arts Movement (BAM) which had Amiri Baraka, Audre Lorde, Gwendolyn Brooks, Lorraine Hansberry, people who really did work as far as organizing or being involved in the community…and then on the other end, you would have their art being reflective of that. A great example is Lorraine Hansberry [who] was born middle class, committed class suicide (so basically doesn’t accept the ideologies of that class), and became friends with Nina Simone. That whole infamous “duty of the artist” quote was very much influenced by Lorraine Hansberry, like “Young, Gifted and Black” was.
My goal is always whatever I do, artistically, to be a genuine reflection, that there’s moral alignment. It’s a moral positioning in the sense of “I am committed to the work that I do,” being reflective of my politics, and I’m gonna stick with that. So unfortunately, you do lose a lot of opportunities, but at the same time, also, just remembering everything that I’m writing towards is so Black people either can become aware/have a name for what they’re experiencing when it comes to oppression, giving a sense of hope, but also going through the tragedy…A lot of cultural work is rooted in trying to create a revolutionary culture…one that we do not have at the moment, but I think about [how] BAM was able to do that. I think about even Jazz and Pan-Africanism, [those were] very interlinked until Jazz got commodified…I’m just trying to contribute from my corner of the world.
GV: How do you think race, sex, gender intersect with disability as well as ableism?
WN: I think at its core when you think about all these things and all the oppression that is faced, and you take each one and then say, “Let’s go to the root of it, let’s go to the root of it,” it’s all settler colonialism and capitalism. That is the one thing that very much intertwines our oppression. Especially, you know, let’s say you’re trans and Black and working class and disabled. Well then you’re disposable by society standards or by a capitalistic standard because you can’t provide labor…, you’re not within this cis-heteronormativity box, [and] also you’re Black, and so on – there’s a lot of things set up against you…Some of the people who are the most marginalized within our communities, it’s because of how many intersections there are and how little support exists for them, and (we’ve seen it with COVID) how quickly they get disposed of. Class also plays a huge, huge role in how people move through the world. But in short, I would say settler colonialism and capitalism, that’s the base answer.
GV: I totally understand. As a Gender Studies major, I just took a class that was on feminist knowledge and basically the whole entire time we were like “You know, it’s literally just all about money.”
WN: Yeah, it’s about the circulation of capital at the end of the day. So a disabled person, for instance, let’s say it takes a [nondisabled] worker six hours to make a rocking chair. For a disabled person, let’s say it takes them eight hours. That’s too long; you’re not making it within the timeframe, therefore that does not make you a good worker…So then we get “tooted and booted.” When you think about disability [benefits], it’s meant to not be something that is functional to live off of. You’re getting $1,500 a month and you’re having one doctor tell you one thing and another doctor (sent from disability services) who wants to take your check away, to come visit you, and “survey” you…It’s definitely designed to make it hard to survive, very intentionally as well. Even the damn ADA is barely followed.
GV: You have a post about patient advocacy. Could you expand a little bit on how you were able to find your information and how to be your own advocate when the (medical and otherwise) system is against you?
WN: For me, I was houseless at the time of being diagnosed, I was going undiagnosed for a couple years even and not knowing it. So I’m houseless, 22 years old, running around LA…sleeping on couches, sleeping, you know, on spare beds, whatever. [When] I got diagnosed, I didn’t have insurance, so I got put on emergency [insurance]…[and] I [became] used to [not going through insurance bureaucracy] for a little while. Then, I was put on a LA Care Plan. I remember I showed up to an ophthalmologist appointment and they said, “We can’t take you today,” and I came all the way there from South Central too, so I was just like “Are you kidding me?” and they replied “Yeah, you need authorization.” I had to go to my [Primary Care Physician], which happened to be in the nurse’s office of Manual Arts High School (basically me and the kids would go to the same doctor). I was getting a different doctor each time and that was a problem, too; when you have a PCP and a slew of side effects from chronic illness you kind of need a long standing relationship.
I was looking around a lot online because I was 23 at the time for any type of help or advice. I was really looking for Black people online who were talking about this or talking about how to navigate…anything (even just a Black cancer patient I would have just gone bananas for), and there just weren’t any. So I was just like, “Fuck, I guess —,” it’s kind of a corny quote now but like, “— be who younger you needed…If this can help someone else, then so be it.”
At first, it was just sharing. I was just sharing how hard it was to be on [insurance] and have doctors where I [tell them I] have a heart problem saying, “You know, I think I have an issue because of the chemo I’m taking” and the oncologist is just like “You just need to lose weight.” Then I get hospitalized a couple years later and it turns out I did have a heart problem…The emergency room becomes your best place, [but] the emergency room is also a lethal place because that is where a lot of people, especially colonized people, experience neglect and that’s where a lot of people experience racism, fatphobia, ableism, and things such as that.
Then, in 2019, I had a really horrible hospitalization and it was at this hospital in East LA called White Memorial. I have a Medium piece about it that is posted on my page. Nobody was helping us, I wasn’t getting care for over 24 hours, it was a pretty dire situation, too. It was just really harrowing and I realized the only way I got out was because of these things that I had been learning and implementing when it came to patient self advocacy…Because if I didn’t have my friends and then myself, I just think about people who don’t have access to that knowledge or anything, you basically become straight to a casket because that’s how they treat patients. So, I put [the self-advocacy post] together after that.
My family would always say you have to know your condition as well as your doctor, so I spent a lot of time researching my leukemia, the chemo that I was on. I could speak the language because a lot of doctors come in and they want to overwhelm you with “intelligence” and it’s really they’re just saying some fucking shit about your white blood cells…Also, having a symptom tracker, so that if they try to invalidate me, I’m like, “Here it is.” … A lot of it was this deep resilience and desire to live that was guiding it, but it was a lot of trial and error where I got lucky often. I think by 2019, I just kind of had it down pat a little bit from interacting with doctors so often. Obviously, I think so much more can be added to that, but I’ve definitely had people hit me up saying “It saved their life in the hospital” and things like that, or they’ve used it for caregiving purposes and whatnot. It’s just the totality of my life experience at that point, where I had cancer, at that point, for two years. I was pretty experienced with the system and whatnot to where I was like “Okay, y’all, this is the cheat code.”
One of the beautiful things about Instagram is everybody kind of grew up with me and experienced everything alongside me. I used to be a lot more personal when it was smaller, but everyone went through my cancer with me. So, they knew when I got denied care, they knew when a donor option for my transplant pulled out, they knew so much. Also on Instagram, learning from others always helps, like, I’m sure there’s somebody, somewhere who said something random to me and it stuck, like, “Tell the doctor to write in the chart.” … It’s a lot of whispering to each other about what to do when we get in there, and it’s sad to think of what we have to do to get in there if it’s a life threatening situation, if we’re in pain, if we need help, to think of having to reset your brain to be ready to essentially fight to get care.
Walela Nehanda, a Black nonbinary person with long dark brown braids threaded with colorful beads and shells, a beaded necklace, a deep yellow layered top, and tattoos, poses in front of deep green foliage with their head held high in a peaceful expression. Photo by Walela Nehanda.
GV: Your writing is so good. I enjoyed it so much and your very beautiful tempo with it. How do your experiences impact your writing?
WN: I don’t try to be anything…I think that’s the thing. A lot of people come online and they want to be niche and they want to be opportunistic about advocacy and activism. I believe many people think they have to come online, know everything, and have everything figured out. Everybody is learning about my [asexuality] alongside me, everybody is learning about how I came into my disability, and even just accepting it more alongside me. I do not know jack shit. I’ve always said I’ll share what I read and if you come to a different conclusion, feel free to talk with me about it.
I think it’s important for there to be Black people that are like that online because we’re always expected to be the teacher, the Mammy or the Jezebel, or whatever someone assigns to us. I was just talking with my best friend about this…No matter what, no matter where I am, I’m Black first and therefore I become whatever that person projects on to me. So I’m nonbinary — that doesn’t matter to a lot of people even if I say that to them because in their mind, it’s whatever hypersexual role they want to put me in or the hyposexual role of nannying them, basically being a mom, or therapist friend.
… I mean, obviously, a lot of these things that we’ve talked about are influenced by media, also family, also culture, there’s so much that influences us to…feel bad about ourselves. Obviously that helps with consumerism, but also genuinely to try to get us “in line.”
GV: Yeah, I agree with you…I didn’t really think about [the influences] until later when I was trying to figure out what my identity was.
WN: It’s something that’s coming up more…There’s Angela Chen’s book “Ace” that talks about this. I think Devyn’s attempt with “Cultural Worker” is an attempt to make a new language for things that need a little bit more specificity. I have another friend, who goes by Ngwagwa online, who was saying for Black people, the idea of neuro-expansive, as opposed to neurodivergent, because being Black and neurodivergent is a very different experience than being any other race *and* [neurodivergent]. I’ve been trying to do that with my gender. I’m like “What is it?” because no matter what, I also don’t like the concept of being/having the colonial term and being like “a-” or “non-” in front of it, which means “without or not.” I don’t want that to convey what my gender is, by saying “I’m not this.” What am I? [The answer] is always “I’m just a person,” but we don’t live in a world like that.
GV: Do you want to expand a little bit more on the asexual spectrum? And where/how do you fit into it? Or just your experience(s)?
WN: I came out as demisexual and demiromantic…and it was largely because my friend is asexual so we were able to have conversations that we never had before. And I was like “Holy shit, wait. You’re similar on this, you’re similar on this.” Then we were watching this one Black person on YouTube…where I was like “Holy fuck, someone’s saying something.”
With nonbinary, I remember I was at a Bi+ Task Force meeting (I am not a bisexual). Basically, they were going through gender before and I heard nonbinary and I was like “Holy, there’s a word for this” because I felt like finally my whole life made sense. [Finding asexuality] was…the same way, when being able to come into that where I was like “Holy fucking shit.” It really makes you look back on things that you were forced to do and forced into for acceptance.
I’ve been looking at my childhood a lot because I just think…“When did the indoctrination really start seeping in?” I think about elementary school; I was friends with the boys, I was friends with the girls. I was a tomboy [and] whatnot, whatever, I was just being me. Then we hit middle school, I would hang out with the guys a lot. I also was hanging out with the girls and whoever else and then it quickly became like “Oh, so-and-so is dating Walela” and I was like “There’s nothing there.” It was really tough because it was the same girls saying this that my guy friends liked so that they just nixed me because I was getting in the way…I felt really disposable and I was just like “All of this? Over I guess sexual attraction, right?” … I had a purity ring, but (even when I was younger) I wasn’t behind the whole Christian shit of it. I just was like “I really want whatever type of interaction like that to be with someone that, it’s connected, and it’s very meaningful.” I thought maybe that was a prudish take at first and like anti-sex liberation and stuff like that, but it’s not — I was simply trying to find ways to understand what I wanted.
**Content Warning: mentions of abuse**
As I got older, It felt like I had to trade sex for the possibility of a connection. So I actually was like “Okay, let’s just do this so that I have a chance at you seeing me as someone who [could be a] partner.” I think that’s really sad at the end of the day because I’m not having sex on my terms; I’m having sex on the terms of what I think I need to to morph into society, and I really do regret that…My ex and I fell in love extremely quickly. I was convinced we were so emotionally connected. I finally enjoyed sex. Usually, before, I was just like “Okay…I know what to do because Cosmopolitan taught me”… Eventually I just didn’t want to have any sexual relations with my ex while we were together, I was very ambivalent, and that’s because I am sex ambivalent and my ex was abusive. That emotional connection chain was severed…With things like that going on and trying to build a secure attachment (which takes roughly two years from what I’ve read), it did make sex sometimes feel like a chore and my partner was also more sexual than myself and that gap widened over time…I think finally having her out of the picture, after our break up, I really was able to ask “What the fuck is romance? What the fuck is sexual attraction?” and really [sourced] through those definitions.
**End of CW**
I think one of the most beautiful things is figuring that out alongside everyone else. I know, for instance,…I’ve never seen a romantic “Healthy Love” work out. If we don’t even know what it means…that’s kind of hard because I guess it’s trial and error, but I don’t want to put myself through that because I was a wreck for a long time. So there is somewhat of an aversion I have growing towards romance. I’m not identifying as aromantic, but that’s why I say “demiromantic.” I love the idea and concept of romance, I do have aesthetic attraction…for voices…I’ll just be like, “I could just talk to you forever,” and then I would confuse it [for sexual/romantic attraction].
I’m still figuring out what relationships mean to me, but at this point, I really do believe in platonic love so much, like I’d rather have platonic relationships because I feel like there’s less of a likelihood of me losing that person and that really special bond. It’s not rooted in abandonment, but rather I feel like sex makes things so much more complicated…Also, I always had kind of a low libido (low sex drive). So now being older, I definitely am just like “Fuck that shit.” I don’t feel the need to uphold some societal standard of compulsory sexuality, compulsory romance and things like that; I don’t feel the need to do that anymore. I think that’s just coming with age and coming into this at my age.
Unfortunately, I’m on the older side, so I feel like I’m on the learning curve at the moment, but I’m about to share my thoughts about ace and whatnot, so people come along that journey with me. I don’t have everything figured out, but I definitely know I’m not allosexual…It’s hard for people because I think about people like Yasmin Benoit [who] wears lingerie. It becomes “Oh, you must want sex.” What if I just fucking like wearing a corset? What if it’s just fucking that? Why do we have to sexualize clothing, things that are not even alive? Why are we doing that? … I love that asexual culture essentially is very subversive to our current culture. With coming out, I did get worried too, because I am disabled and there is the whole myth of like, the undesirable disabled person who is automatically asexual; I was worried coming out could reinforce that harmful stereotype within my community, too.
GV: In talking about the intersection I wanted to ask you about the asexuality and disability part because that is something that is in a way historical, and capitalism also takes a role in that, saying that because the disabled body is not good for labor, it’s not good for sex.
WN: That’s because of reproductive labor. We have to think about labor in two forms: productive labor and reproductive labor. The idea of a nuclear family is the Dad goes out and works, the Mom does all the homemaking and makes sure the Dad is fed so that he can go back out to work. Also she’s gonna pop out more babies so they can go to work…For instance, I can’t have kids, my radiation fried me, so I am considered useless then technically…People with mobility aids, in particular people who are darker skin than me, people who are working class (there’s a lot of things that add on to it),…immediately there’s almost like a repulsion towards [those bodies]. That just shows the way that society really loves to criminalize what is not in the norm. It’s like “You’re asexual, you’re trans, you’re this, you’re disabled. Oh, out with the garbage.” It means to criminalize us, or make us seem like we’re weird or there’s something medically wrong with us, on top of whatever conditions we have.
GV: It is Disability Pride Month in July. Do you think it’s important to have that specific niche of Disability Pride?
WN: It depends on what we make of it…If we look at the history of it, a lot of it has to do with legislation getting passed. As a Black person, I don’t particularly care for that. I’m not meant to be a part of the American project, I’m not meant to be seen as American even. I am outsourced, I am the descendant of outsourced labor, basically, a child born here via enslavement. So, my concern always is the abundance of racism in the disability community. For a lot of us who are Black and disabled, it is evident that we need our own place, and I really think that that’s valid too because we need to feel safe. So even having subgroups within subgroups, I do think Disability Pride in general is important just because I think we don’t spotlight that enough.
I think disability is coming to the forefront in more mainstream talks. Like, what happened with Lizzo. And I think Olivia Rodrigo brought an ASL interpreter to the Grammys…so we’re seeing it’s starting to happen and I think there’s more visibility, but also, I don’t like visibility and representation without politics behind it. That’s sometimes the hard thing because that does require organizing, that does require political education, that does require a lot of things that a lot of us are, frankly, too busy trying to survive to do. That’s just me being really honest, like, I don’t have time to organize at the moment.
I also always think about me at 23, looking around for someone like me, and I couldn’t find “me” and then [now] I’ve had younger Black people hit me up being like “Hey, I follow you because you talk about polyamory and it’s really chill and you’re not being pious about it” or “I follow you because of this” or “I follow you because your disability activism.” … That’s great, and for me, I take it as a great responsibility during that time then to educate. But for me, when we say Black History Month, we say Juneteenth, we say Pride, we say all these things, but it’s in my life 24/7. That’s how I am about [Disability] Pride, especially with corporations taking it over. I’m kind of just like “Well, I’m like this everyday.”
GV: What are your thoughts on Disability Pride in general?
WN: During a pandemic, I do think Disability Pride is important because then we can center…the ways in which the pandemic has disproportionately impacted very marginalized communities even within our disabled community. We’ve been forgotten, I think it’s a good reminder. I mean, I try to remind myself constantly, but I think it’s extremely important in that sense, because also for organizing efforts. I have to double mask everywhere I go and to see events where I’d be like “Oh, I want to go to that,” and there’s [no precautionary measures] in place I’m like, “So is it not meant for me to show up?” …
Disability is the final pillar of understanding that people forget and consequently disabled people, disability justice, etcetera are constantly left out. I think for me, I’m kind of like “Meh” around a lot of stuff because if my people aren’t part of your vision of liberation, then what is it? …What does freedom look like? What does community care look like at this moment? We live in a really apathetic society right now and so really trying to steer that, it’s really tough, especially when you’re disabled, because people think you’re doing the most asking for accommodations.
You can find Walela’s writing, interviews, and resources on their website (or their Medium) or on their instagram @itswalela.
Walela Nehanda, a Black nonbinary person with long dark brown braids threaded with colorful beads and shells, a beaded necklace, a deep yellow layered top, and tattoos, poses to their side in front of deep green foliage looking into the camera with a cheerful smile. Photo by Walela Nehanda.
Credits:
Author: Giulianna Vicente (She/Her)
Copy Editor: Christopher Ikonomou (Xe/He)