Being disabled and queer means living in a Venn diagram. You’ve got a lot of material in both circles, but the most interesting (and complicated) experiences populate that middle place. I feel that push and pull daily as someone who’s visibly disabled but still nonthreatening to able people; such privilege comes with its advantages, but also generates internal friction. So many queer disabled folks I’ve met (and interviewed for this series) describe, at one point or another, how it feels to not quite be “enough” for either community, and the pressure to “pick a side.”
That’s why I was excited to talk with Max, a 26-year-old “mixed Pilipinx/Ashkenazi queer working with kids and generally in many novice stages of learning to organize while being a part of community.” They described their relationship with their mother, a prime example of insider/outsider balance, this way:
“I was estranged from my mother after I moved out a few months ago; we got into a physical fight. She is the probably the person who both underestimates and overestimates my abilities the most. But she is the longest and closest relationship I have ever had.”
Read on for the challenges and joys of working with little ones, the meaning of community, and spaces that let you do you.
Tell me about your work.
I tutor and teach social justice through Public Allies, an AmeriCorps program.
That’s so cool! How did you get involved with them? And what kinds of stuff do you have in your curriculum?
They were recruiting last summer and I saw through Bay Area queer exchange on Facebook. Recently we focused on Women’s History Month. It’s kinda weird being nonbinary and focusing on womanhood, but I think right now for where everyone is at, it’s important.
I work with an underserved population of mainly Latinx kids. Their culture is very gendered and right now that’s what they’re used to and understand. We had a day where we talked about gender roles and actually, the kids who did bring up transgender identities weren’t Latinx. I joined the program to do something more radical, but I also realize the importance of approaching complex concepts in palatable ways.
I definitely get that. Disability activism can work that way too, in my experience.
Totally. It’s hard to explain to someone all at once the concept of abilities when you have to explain how they work within all these different diseases. Disability itself is a spectrum too. It’s something I continually put aside like it doesn’t matter very much, because it feels like there are so many other things to address and deal with anyway.
While a lot of intersections are covered in the places I habituate, ableism is the last standing prejudice that is perpetuated by people of all colors and genders. It feels really lonely, and even I feel stunned and frustrated with where my abilities are — especially in being able to even describe them.
“You get so tired of people who look the same and aren’t really you.”
I’ve felt similarly. Like, with some of the political activism I’ve done recently, for as good as everyone’s intentions are and how much we agree more broadly, the minute I bring up a disability issue (whether it be policy, access to events, or whatever) people are like “Oh shit, forgot about that” and then try to talk me out of caring.
For me it’s especially tricky, since my disabilities end up being very fluid and invisible because I’m bipolar. When I entered my program I was manic and made some weird first impressions. Right now I’m not, but those impressions still stand. I wish I was in a state to navigate these social situations differently, but it is what is and the assumption is that it says something about my character. I’m not sure some of those folks could conceive of what that’s like. But if they could I think they would be kinder.
Have you found any activist spaces that have been better about confronting ableism? Or has that exclusion been the standard experience for you?
I think one of my best experiences was the Rebirth Garments fashion show last year. Sky Cubacub, the designer and main coordinator of the event, basically left the main Queer Fashion Week because they refused to make accommodations. [Editor’s note: you can read Rebirth’s official statement on the decision to withdraw from Queer Fashion Week here.] I still can’t believe that happened. But it was a great show. The models were so much themselves and so happy — totally the antithesis of moody, serious, similarly-shaped models. You get so tired of people who look the same and aren’t really you.
It was a smaller crowd but really cozy. And I was so careful in asking if I could share space while watching rather than just finding a spot with a stranger. You just felt like putting intention into that, which is something we generally don’t believe we have time for.Sky created an atmosphere where that intention felt so important. And the audience was invited on stage afterwards too. I was just in the audience, I wasn’t in the show, but I did a little dance on stage after.
“I love her for what she can do, and mourn what I wish she could.”
I want to shift gears a little bit and talk about your mom, if that’s okay.
That’s totally cool.
What is your relationship like now?
I’d say a work in progress while she calls for reconciliation. She is admittedly self-critical. I hope she has more remorse over some of her actions, but she may not ever tell me.
It’s complicated because she, more than anyone, will cheer me on for what abled people don’t count for all that much. Like showing up to work consistently. Or a poem I wrote, which is hard to even produce in terms of organizing my thoughts and going through the process of committing them to paper. She’s the only person who validates my creativity in the way I need it, because my process is highly impacted by disability. And that’s what makes me feel loved: when people ask me about what I write or draw. I feel so special when someone understands how personal and important those things are. It’s extremely vulnerable for me.
On the other hand, she still dead names me. I haven’t asked her not to or come out in concrete terms, but those feel so Western and unimportant when I see how dapper she is. She doesn’t need the words — or at least, as a disabled and not-completely-American person who has not always had the right words, perfect Americanized and properly PC queer-informed English is kind of whatever in terms of understanding someone’s abilities and nationality. But she is a white American, and a teacher, also struggling with disabilities and an older world view.
I love her for what she can do, and mourn what I wish she could.
That’s a pretty spot on summary of a lot of disabled folks’ relationships to their parents, I think.
When I talk about my queer identity in regards to my parents, I usually mention “I mean, they know.” They always have known, in some way, that I’m nonbinary. Even as a little kid, I had both Elvis and princess phases. But I haven’t really said the word nonbinary, and I feel like it ends up being just another thing they don’t or can’t get, and they’ve seen me go through so much already.
Sometimes I still feel like we all haven’t healed from a major suicide attempt I made a few years ago. I’ve spent months in hospitals. And so nonbinary ends up, to me, being a word for an identity they have been witnessing their whole lives; the word itself becomes unimportant. It becomes unclear whether or not I have an identity that is unaffected by mainstream society. That’s why I’ve become more tolerant of she/her pronouns, especially being in a work environment that I want to make more familiar for children. So there’s a lot to consider.
“I’m really intersectioned and I feel affinity for parts of Asian communities, neuerodivergent communities, queer communities and kink communities. I don’t really feel completely invested in one place.”
A lot of your work, and (it seems to me) your life as a whole, focuses on community. What does community mean for you?
I think I want to exist in community and I will follow that important work. It ends up being less cis-focused queers that survive more on fringes. I think I’m still figuring out what “existing in community” means. I think all community struggles to maintain equilibrium, whether that’s your soccer mom, church or queer community center.
I’m really intersectioned and I feel affinity for parts of Asian communities, neuerodivergent communities, queer communities and kink communities. I don’t really feel completely invested in one place. It’s always been like that.
Do you find strength in that? Or has it been exhausting? Or both?
A little bit of everything. But it makes for the weird outsider/insider perspective. I end up empathizing with a lot but also not really wanting to get involved in some of the “drama” aspects. I understand that close involvement means a lot of interpersonal conflict, and I never want to downplay how frustrating and sometimes even dangerous those things can be.
Do you think being disabled affects how you experience community, or the idea of love and closeness in general?
Yes. In terms of affection, due to major issues with abuse, trauma and dissociation, touch can be really difficult for me. Intimacy itself feels like a sensory overload and my disabilities work in such a way that group dynamics are easier than one-on-one situations. I just feel so inadequate very easily, not knowing if I’m comforting someone enough through touch and being terrified of it, and also being extremely particular of when and how and from whom it’s given.
In some ways I envy dominant culture, because it seems if you exist in some static way you might avoid butting heads. But that’s probably a myth I’ve constructed for myself. Still figuring it all out, I guess.
Oh this was all the awesome. Thank you Carrie (and Max). Very much!
“I’m really intersectioned and I feel affinity for parts of Asian communities, neuerodivergent communities, queer communities and kink communities. I don’t really feel completely invested in one place.”
I have so many feelings about this. Replace Asian with Jewish and it’s me. Sometimes it’s like being in the middle of a busy intersection. It’s confusing, overwhelming, feels dangerous, and can leave you in a wreck. There’s so many moments where I’m desperate to talk to someone who understands all the things and I wouldn’t have to be constantly explaining something or be forced into the role of the educator.
thank you so much for this interview. i have very complicated relationships with the few family members i still talk to and most of the self care i read about when it comes to family is to cut them off. as a latinx person with disabled immigrant family members it never felt like a comfortable/real option and this was so refreshing and honest.