Art is at the Heart of Disability Justice
An estimated 7.5% of the adult population in the United States is now living with long COVID, the long-term or chronic effects of a COVID infection, or reinfection, in children and adults. Artist, teacher, and HIV organizer Pato Hebert is one of them. In January, Hebert spoke with Abdul-Aliy Muhammad, who lives with both HIV and long COVID. A native of Philadelphia, Muhammad works as a writer and organizer, and recently received the BIPOC Fellowship for people living with Long COVID and associated diseases from Long COVID Justice, a project of Strategies for High Impact.
The two first met through their HIV related work with What Would An HIV Doula Do?. In the aftermath of the racial reckoning of 2020, the two edited the zine, What Does an Uprising Doula Do?. The project looked at the work of a doula as someone who holds space for others in a time of transition to ultimately answer the question: how is an uprising a time of transition?
During their conversation, Hebert and Muhammad reflect on how the work of artists propel justice movements and why a disability framework is key to inclusivity and understanding. From writing and using art to organize, to choosing to live their life visibly and vulnerably, Hebert and Muhammad go deep on grief and their evolving understanding of gender, and what it means to build community.
This conversation has been condensed and edited for clarity.
Pato Hebert: You told me that as a young child, you loved science fiction and you wrote these elaborate short stories. . . It made me think of adrienne maree brown, who said, “Speculative fiction is where we get to practice the future. I think that science fiction is a form of organizing, and organizing is science fiction.” And so I wondered, how did you get started writing science fiction? And what do you remember about those early stories you wrote?
Abdul-Aliy Muhammad: I’m not often asked about my childhood . . . in the context of my artistic practice . . . and I think we talked about this [before] how often I’m addressed as an organizer first, and not as an artist, as well. Those parts of my identity get relegated to the corner pockets in the room.
But as a kid, I grew up in a Muslim community, with my mother and my older brother and my oldest sister. We didn’t see each other a lot during the week. I would see my mother doing Jumu’ah on Fridays. I hardly saw my brother and sister. So I had a very intense internal life. I lived in my mind a lot, and part of that was writing because I couldn’t really articulate what I was thinking about for anyone else but myself.
And so I did the old style marble composition books and just started writing whatever that I was thinking about. And often the stories were about some kind of magical being, some kind of person and . . . the power they had possessed or something they would do in the world. It was always otherworldly, too, about a place I had never seen physically that I could imagine. Or the texture of the place was different than my living situation.
I would just write for myself, mostly, I wasn’t a kid that shared my writing with most people, My mother read my writing. [She] was definitely interested in those creative parts of myself, so I would share with her.
[But] when I was in middle school, I was asked to write an essay for social studies. And after I’d written that essay, the teacher said, “Oh, you can write! I think you should enter this poetry contest.” And I did enter into the poetry contest and it’s in one of those compilation books, because that was what I won. I won the entry into this poetry book for writing the poem, and it was called “My Mother.” And since that moment, I was interested in poetic form and of seeing the world through that kind of method of communication.
Pato Hebert: And right into the present, you’re still writing poems. You’ve got three chapbooks now.
Abdul-Aliy Muhammad: I have two and a third that I am working on.
Pato Hebert: I’m gonna call it three!
We’ve talked a lot about time and that sense of not having time that you were kind of inculcated in growing up. And just a few months ago was the 10 year anniversary of losing your mom. We’ve talked a lot about grief and what we’ve learned over the years about how much isolation does further harm to us. Solitude, retreat, care — those can be really powerful parts of the way we not just survive, but thrive. But isolation – because of poverty or racism or transphobia, or just not being able to get access to what you need – is part of what we know puts us at risk for HIV and COVID.
And our compa JD Davids reminds us how important it is not to mythologize the HIV activists or place the activists on the pedestal. And JD asks, “How do we dare to live and foment?” And I wonder if you could respond to that? How do you dare to live and foment not on a pedestal, but in the grip of the every day?
Abdul-Aliy Muhammad: I think the way I decide to live now, which is very different than how I decided to live previously, is to welcome all of myself into my body, and not try to shut down the undesirable parts of myself.
Pato Hebert: Undesirable to whom?
Abdul-Aliy Muhammad: Undesirable to the system. To the world. To these patterns of violence that we are kind of socialized in. I was someone who had a really strong internal sense of self and identity, but I wasn’t someone who thought that what I was thinking was valuable to anyone else. That was something that I know has to do with the way that the world views Black people and Black young people, and at the time I’m a Black person assigned male at birth. I’m dark-skinned. So I think it definitely is connected to the systems. But somewhere in there, I got the idea that what I was thinking, and what I envisioned for myself in the world, and what I imagined wasn’t important for anyone else, but myself.
And so when I started to organize as a young person, I realized that what I think internally is important to speak about and is useful to the world and to other people than just myself. I think that opened up so much for me about how I foment and live in the world.
For a long time I struggled with visibility or being visible. I still struggle with that . . . but I think I am less worried about being seen by others and being seen as rough around the edges. It’s being seen as inarticulate, at times being seen as scruffy. I think I’m okay with all the parts of me, even the parts that I struggle with being on display in a way I wasn’t when I was younger. And then I would kind of hold on to those parts tight to myself but what I know now is that those rough parts of myself and those things that I don’t want others to see are probably the most interesting parts of who I am. . . And so I think, for me, the question is how do I show them more? How do I lean into them and get to notice them more and not shun them away?
Pato Hebert: You’ve had to navigate living with HIV and living with long COVID. . .As somebody who’s built community, I wonder if you have thoughts about what it means to build community and relationships through chronic conditions?
Abdul-Aliy Muhammad: For me, it’s a big part of how I survive. It’s a big part of my survival building community with folks with COVID, folks with HIV and other chronic conditions. When I was diagnosed with HIV in December of 2008, it was . . . I think it’s probably useful to talk about what was happening. My mother had been diagnosed that previous summer with non-small cell lung cancer, and my mother and I were extremely close.
That was hard.
It was hard to know that she had a very small amount of time to be on this realm. To hear that directly from her, and sit with knowing that; having that information did something for me. And I tested positive for HIV months later. So, this was a time where I was extremely depressed and also grieving; preparing for the ultimate kind of grieving moment when she passed, but kind of grieving her as she was still here. She lived until 2012, which was a long time for her to live with this kind of cancer, and so she had time to make new memories with people. She would say, “I want to make memories with you.”
One of the things that I didn’t share with her but she found out probably weeks before she passed was that I was HIV positive. And she called me on the phone and she was crying. She said, I want to talk about your health. I want to talk about my health. And she mentioned to me that my sister, my baby sister, had told her that I had HIV, and parts of me wanted to be defensive because I didn’t want her to know, because I felt like I didn’t want her to build that burden of having to worry about me when she was worried about herself. And in that context, I mostly hid, and didn’t disclose to my family and friends my status. . . And my mother and I, we didn’t have a chance to talk about my HIV diagnosis that much. We talked on the phone, and then we were supposed to have another conversation [but] quite soon after that, she started being less able to have conversations and so it never happened. But after her passing, I made a commitment to myself to talk about being HIV positive more, to write about it, and to engage with community members who are pos.
Before that, I was not wanting to do that, and not wanting to be in a community of people living with HIV. I wanted to be alone; suffering silently, which is the messaging I received about disease and how you handle it from my community. Being a Black person, being a young queer person at the time, I saw people either code in a certain way, or not talk about at all. And I felt like I needed to build with others to understand what I was going through.
Pato Hebert: HIV and COVID, of course, are really very different viruses, [with] very different impacts on the body. And yet, there’s some stuff that’s shared structurally. I wonder if you have thoughts about how it is that we nourish and embolden people living with viruses?
Abdul-Aliy Muhammad: For me, especially having lived through an HIV diagnosis, being diagnosed with COVID, and having long COVID has definitely taught me about communication and the importance of communication around what I need. Before I was more interested in what others needed. Even after my HIV diagnosis, I was so interested in/and taking care of others, because that’s what I default to, is being a caretaker. But with COVID, I had to relinquish a lot of that.
I had to really focus that concern on myself. Living with long COVID, I don’t have the kind of concentration I had before, I can’t focus on the amount of tasks that I used to in a day or in a week. I forget things. And so I’ve learned that I need to say what I need and invite others to support me in what I need more than I did before.
And so I think that a community that nourishes and emboldens people with viruses and disease, is a world that understands that we should absolutely always try to check in with people about capacity and not assume capacity. It’s a world that offers up the relaxation of creating care spaces, and not just spaces where work happens. A space that is not just comfortable, but a space where your body is your work like, “Hey, this is a day for you to rest. This is a day for you to get acupuncture. This is a day for you to lean into massage as a therapeutic practice. Or we can just hang and just chill and lay on our backs.”
I think creating a space where the work doesn’t always have to be as rigid as the systems make it to be, or happens in a timely way that is people think about working, I think that would help create nourishing environments for people with viruses or with disease versus assuming that after you have COVID, that you’re completely able to function in the way that you functioned before. We should never assume that people are able to function the way that they did the previous year, the previous cycle of something in perpetuity, but that’s part of the work around disability justice. [It’s] understanding that people change, people shift and in different times, people have different capacities.
People have moments where they’re fully able to kind of commit to some kind of action or work, and then other moments when that might not be the case. It’s about our mind and body and spirit and not assuming that someone who has organized a time-limited action before can just jump up and do that immediately because they have that in their history.
Pato Hebert: I probably got infected [with COVID] in February  but began feeling sick in March . So March  will be three years. I continue to really struggle with fatigue and brain fog, and I got reinfected late last October. It has been a real setback. But one of the things that was different about getting infected the second time around . . . the world is completely different.
It’s a different strain of the virus. But I also had so much more community, COVID community on top of my HIV community, and my many other kinds of communities. And I also had learned practices that have been really helpful around pacing – the wisdom you just shared that we can’t expect people to be at previous capacity or even some kind of gold standard of capacity. You were talking to me the other day about how our worth is not determined by our productivity, and that’s just as true in activism and organizing, even though it may be more painful. That truth is inside of a workplace or where we’re trying to earn our coin just to survive.
And I appreciate, as we began talking about HIV and COVID, you were candid about [the fact] you didn’t tell that many people initially, and there’s all kinds of reasons why we choose to share when and how we do, and why. So often we don’t. Respecting each person’s decision and each [person’s] dignity and sense of interdependence, but also autonomy. What do we each need? I’m always moved by how vocal and public you are.
We’ve talked in the past about how much of our vulnerability in our sacred care practices do we want to be public. So much of your activism, in addition to just living and being with your people, I think, dances along that complex question. Doing the care of course, or trying to remember to do it, but also the vulnerabilities that can come even just with friends or lovers and community, let alone the broader bigger public. And I wonder how you dance with that vulnerability and visibility?
Abdul-Aliy Muhammad: I think it is definitely a dance to figure out where to be vulnerable, and when, and also who is it for? Who am I talking to and about what? I think you’re writing about sacred care practices and community ritual and, in language, how do you offer it out to others? And why do you do it? I think when I’m my free self, I want to share what’s meaningful. I want to be real. I want to be honest. And sometimes, because of the way the world is set up, I know not to do that in certain spaces. And also, part of it is: will the people I’m sharing this with, actually hear what I’m saying?
It’s also okay to say, “No,” and say, “I’m not going to share that. I’m not going to share that image. I’m not going to share that thought at this moment, or any moment. I’m going to write it down, and I’m going to sit on it until I feel like it’s okay to share.”
Pato Hebert: Transparencies are a deeply empowering thing, because we choose them. And I often think that opacity, secrecy, not knowing, has long been a political survival skill. I think about the Underground Railroad, the people trying to get across the Mediterranean or the Caribbean, or the southern land border of the U.S. It may be very important [for some information to be] as unknown as possible for physical survival. And what it means to have to sometimes work in these ways that are known to only those who need to, and then what it means to also be together, to claim our space or what we need. And I’m struck by how many folks I’ve encountered in the COVID movement, who maybe weren’t politicized prior to that, especially if they’re white, or they’re middle class or they’re straight, or they just haven’t had to think more reflexively about their place in the world, and are maybe for the first time realizing like, “Oh, yeah, the state may not exist to support your value, your life.” And I am trying to really appreciate and open up to this politicization that’s happening for many people who are thinking through these things and feeling them in the body for the first time. I wonder, Are there any origin stories or lineages that you feel you come out of, that helped you become the person you are in terms of your politics?
Abdul-Aliy Muhammad: Absolutely. I think for me, I didn’t think of myself as an organizer or a political [activist] first, I thought of myself as wanting to do something to disrupt what I was seeing. That’s the first. And I think of my first crisis of consciousness, or moment when I felt like I had to act, I had to physically go to a protest or physically attend a meeting, was when I was in high school.
It was the time that we had just invaded Afghanistan and we were going into war with Iraq. And that was my first fully understood memory of what war means. I had been extremely young, when the Gulf War happened, and remember the fact people were still kind of made to go to war, made to be in the military. I remember that as a small kid. But the Afghanistan invasion, and the subsequent war in Iraq, was, for me as a young person, the first time I had to contend, in a real way, with the possibility that my future was uncertain. I started going to different organizing meetings, where I learned about the power of collective action, and the responsibility of someone who has U.S. citizenship to interrupt what this power structure was doing in the world. And that’s when I knew I had to do something differently.
But in terms of lineages, I think a lot about Black women organizers. My mother, and how my mother was able to easily talk to her neighbors and share resources with her neighbors. . . [She] was always offering up resources around what she knew, or what she had heard about. It could be something as small as this grant for fixing up your house, but she was always in a mode of communication with others about what she had learned. And so I think that was the earliest form of organizing that I engaged with.
And so thinking about my mom, Fannie Lou Hamer, part of the Black Liberation Front . . . Assata Shakur is someone that I think about a lot in my work, because I was really deeply impacted by her autobiography. Jose DeMarco, a long-term ACT UP [Philadelphia] organizer . . . Those are some of the folks. I learned early on that conversations with people build movements. Collective action is an important part of it, but the word that gets us there is building relationships with people on trust and understanding first.
Pato Hebert: Last year you received an Artist2Artist award from Art Matters. They give out fellowships to artists who are healers, activists, elders and caregivers who address the long-term sustenance of their communities. And I think this reflects a shift we’re beginning to see around understanding and valuing the complex role that artists play in community and the power of creativity and organizing and activism. Could you talk about what it was like to receive that award and how you’ve been thinking about creativity in the rich range of all that you do?
Abdul-Aliy Muhammad: I was floored. I was caught off guard when I received it. You know, part of capitalism is gatekeeping and part of that gatekeeping is creating conditions where people opt out of thinking of themselves with various labels. Labels that are ascribed versus labels that you self-identify with. Art was at a place that I could never reach, right? That I was always putting my hand out, or moving towards it, but I was never able to claim it. So, receiving this fellowship was affirming. If I’m real and honest about it, I see myself as a creative person, but would never, prior to that fellowship, identify myself as an artist. I find it hard to do that now.
Artistic expression can look different for each individual. And so I am excited about doing things that use my creative voice, my creative vision more. I’m excited about seeing them as not disconnected. . . I want to find a space where they can live together. And I think that in 2023, [I intend] to do more readings, and see that as part of actions. My poetry is action. So yeah, looking at direct action differently.
Pato Hebert: I always say that a poetry reading and a short story reading was my entry into HIV [activism and organizing]. I really believe that a poem can change your life.
. . .
I’m grateful for how you’re sharing the wisdom of the body today. You and I have talked many times about [how] we’re not small humans. And there’s lots of complicated ways that people perceive us, as different as we are, you know, my lightness and my mixedness and your beautiful darkness and your West Philly Blackness. But our bodies are never neutral, as different as we are. I think we’ve loved talking about how we keep reimagining ourselves. I’ve learned a lot from you in the ways you’ve talked about your subtle shifts and the evolution in your sense of your gender, and I wonder if you want to share a bit about that and [how] the shifts shape how you move in the world.
Abdul-Aliy Muhammad: I came out as non-binary several years ago. I remember getting [asked] about my gender presentation like, “Are you going to do something different with your facial hair? Are you going to dress differently?” And I remember one of the responses that I had to one person in particular was about safety. Growing up in West Philly, having the body that I have, and moving through the world being perceived as a Black man comes with concerns around safety if I’m dressed a certain way. So, attire and adornment have always been things I’ve struggled with.
As a young person who, even today, if I decide to wear something that people might perceive as clothing for masculine folks, or someone who is considered a man in a lot of ways, that portrays how I feel inside and how I want to feel in my body – how I want to adorn and dress. And I understand that as someone who’s dark-skinned, there is this kind of struggle around being perceived. I’ve been told repeatedly how aggressive or confrontational I am. A lot of that has to do with just my body size and my darkness. It has nothing to do with who I am as a person, or how I show up in the work that I do. And so that impacts how comfortable I feel in spaces.
And especially people assigned male at birth, not having access to external images of what softness is, and having to rely on and build this concept ourselves within us, how do we communicate that softness to the world? And so that’s definitely something that I am thinking about. How can I change the way I adorn myself and dress myself so that I might feel more comfortable or more pretty, or more beautiful, in a way that I’m not impacted or targeted? Those are the things I always constantly think about. And can I wear something and pull it off because of my body size and how I look? So those are some things I’m always considering and thinking about.
And so I like to have things that are accented . . . And when I do those rituals of care around getting my hair cut or getting my nails done, it helps me feel less disconnected from my body. When I don’t feel beautiful, I feel disconnected from myself.