Queer Crip Love Fest: In Control of My Own Narrative

Photos courtesy of Sandy Ho

Fun fact: when I’m not busy being professionally gay on the internet, I am a librarian. Right now that means taking a lot of inventory and reconciling our catalog (thanks, summer!), but obviously the top perk is getting paid to live among books all year long. I would be a disgrace to my profession if I didn’t devote an entire Queer Crip Love Fest installment to the love of reading. Fortunately Sandy Ho — an educator, activist, organizer and overall badass from Boston — has us covered.

“At first reading was something to pass the time in doctor’s offices. At one point I was really ashamed that this is how I first came to love reading: as a distraction from the ways my disability manifests in ‘health problems.’ But now I’m damn proud of the fact that that is how I first became enthralled. Through all the different ways my relationship with reading has fluctuated, it has also developed alongside my disability identity. As a child who experienced a lot of unpredictable physical pain, I gravitated towards books that gave me finite conclusions — the kind of resolution I wasn’t getting from my body. Once I got older, reading morphed into non-academic education and identity-seeking, a hobby that gave to me more than I took away. It’s equal parts salve and catalyst.”

Enjoy, fellow brainy weirdos!


One of the goals of this series is to celebrate the many forms that love can take, so I was excited when you specifically brought up reading and books. What does love of those things mean to you?

To me, love is freedom, and it’s also about respect. So freedom in the sense that I’ve been able to turn to reading no matter how confused I’ve been about my identity or my body — or even how proud I’ve been. That freedom to return to that place of comfort and empowerment is love. In my free time, I also work with a senior citizen who’s writing her memoir. Watching that process of putting a book together, I recognize that whether I like a book or not, it embodies somebody’s dreams and their end goals, and it took a lot of work. So even if I don’t love what they’re saying, I respect the time they took to produce something and share it with someone.

I’m interested in how reading evolved from something you did in the doctor’s office to something that empowers you. Can you tell me more about that?

I’m a child of immigrants, and I come from a family that’s always valued education. I don’t know if you’re familiar with the show Fresh Off the Boat, but there’s an episode where the mom takes her kid to the grocery store to cool off because she doesn’t want to turn on the AC — that was very much my mother, except we went to the library. My grandparents worked in the Boston Public Library growing up, so we were always surrounded by books.

Sandy, a young Asian-American woman, poses for a selfie in front of the Boston Public Library

At the Boston Public Library

Even though they never explicitly said so, I think it’s something my parents realized was empowering for me. My older brother leaned more toward math, and I was like “No, that’s disgusting.” So I would always just be reading stories. It was something to pass the time, but it was also something that just made everything go away for a while. There were a lot of things happening at the doctor’s office as a kid that I didn’t understand and were frightening, so having a book was a comfort for me. It was always those sorts of long-winded adventure books.

Was reading was a form of escapism for you?

Yeah, definitely — it was about escapism and distraction. And then when I started writing my own stories, I realized that I could be in control of my own narrative in a very basic way. I would make up characters who were basically aspects of myself, but I never brought disability into those stories — which is interesting, I realize now.

That was my next question, actually.

I’d never read a book with disability in it that wasn’t kind of instructional: “This is so-and-so, in a wheelchair, in a classroom,” and the wheelchair looks like it comes from the FDR era. Outside of that, I never came across disability in the stuff I read, or that I wrote myself. I think it was because of that focus on education, and this idea that “Look, if you just do well in school, you’ll be able to do X, Y, and Z, and let’s just treat your disability when it comes about, as necessary.”

I relate to so much of that. The idea of being a Smart Kid as a way to assert yourself, I found super helpful on one hand, but later realized it also bred all this internalized ableism. Have you had that experience?

Yes. Even if given the opportunity to bring up disability in class, I probably wouldn’t have known what to do or say — because, again, I never came across disability in books. I didn’t have the language for it outside of medical diagnoses. So for the longest time, I thought I wasn’t somebody to be concerned with unless I had a medical issue. Other than being able to do well in class, I should just blend in and not bring it up.

Remember the article you wrote a while ago about being angry? I related to that a lot. I was a very snarky, snappy kid. I always felt like I had to be on the defensive and I never understood why. It wasn’t until seventh grade that my social studies teacher pulled me aside and was like “You know, instead of getting in trouble for all these comebacks that you have, you should join Mock Trial. Channel your energy towards that.” And eventually I became a lawyer, so. [Laughs] Here we are.

“I never came across disability in books. I didn’t have the language for it outside of medical diagnoses.”

Was there anything specific you read about disability that led you to where you are now?

Absolutely. I always rave about her book and refer to her as my “disability mom”: Don’t Call Me Inspirational by Harilyn Rousso.

I love that book, it’s so good!

Yes! For anyone who hasn’t, Harilyn Rousso is a woman with cerebral palsy who was born in New York in the ’40s, and this is her memoir. It’s an interesting book because it’s not your typical memoir — there are poems, there are snippets of dialogue she has with strangers, it’s sort of a collection of moments from her life. She explores the typical disability narrative: the disabled person as inspirational figure, just because they got out of bed and managed their day.

I actually came across the book because I was running a mentoring program for disabled young women, and was looking for something we could wrap our minds around. For a lot of these women, it was their first time thinking about disability identity and feminism, and what it means to be a woman. So I found Harilyn’s work, and I liked the way she talks frankly about being a disabled woman: about sex, masturbation, being married, learning how to drive. It was the first book I read where I was like “Holy shit, this is exactly my life.”

Sandy, a young Asian-American woman, takes a selfie at the 2017 Boston Pride Festival. She's wearing a rainbow flag headband and excellent polka dotted sunglasses.

What is that relationship like for you — especially as a woman of color — between disability and your other identities? What does that feel like?

It feels like a mess. I am definitely still trying to figure that out. As a queer woman and a person of color, it’s strange. Oddly enough, I sometimes pass as white or Latinx, so I get a lot of things thrown at me that are not who I am. Going back to the idea of having control over my own narrative, I’m very much working on how my disability relates to my race, gender and sexuality. There aren’t a lot of examples out there. But I try to remind myself that because there are no other examples, I can be sort of free about it — it’s up to me to define.

I’m feeling good about it right now because it’s Pride month [laughs], but on any other day, it can be very challenging. Having that reputation as the Smart Kid, for example, and also being Asian-American, can feel like I’m feeding into the model minority crap. I think because education is something my family always stressed, the first, most ableist idea I was instilled with was “Your disability only affects your body and not your mind.”

I’ve gotten that one, too.

That was emphasized throughout my education. I swallowed it and clung to it. And it wasn’t until about three or four years ago that I realized how damaging that can be. This idea of the model minority, along the same lines, is damaging because people pigeonhole themselves into the idea of doing all the right things in school, getting a white collar job, being on top of their shit and not letting themselves fail or just be who they are. It’s now playing out as a lot of mental health issues and not feeling like you really deserve the things that you have.

I think there’s a hierarchy within disability that a lot of us play into without realizing it. But the more we’re talking about it, the more conscious I am of it. It starts with those of us who can visibly pass as “in the norm” with our bodies and however we present, and the hierarchy works downward from there. That idea makes presenting as a queer woman difficult. Having a disabled body and trying to mesh it with being queer — understanding that the disabled body is rarely sexualized — creates a lot of tension. It’s difficult because we’re always trying to figure out where we stand, and I think sometimes in the queer world, we don’t allow a lot of flexibility in the way bodies present. With my body, it’s never the same day to day; I just don’t move the same way as I might have yesterday or the day before. And the pressures of always trying to present a certain way are challenging. I just wish there was more openness between the two worlds.

“I’m very much working on how my disability relates to my race, gender and sexuality. There aren’t a lot of examples out there. But I try to remind myself that because there are no other examples, I can be sort of free about it — it’s up to me to define.”

So where did you go after Harilyn Rousso’s book?

I basically Googled every name that she mentioned. And that was how I learned about Corbett O’Toole, Simi Linton — My Body Politic taught me a lot about disability history, especially in terms of institutionalization. And I also learned a lot about the politics of acquiring a disability versus being born with one.

What else would you recommend that people read if they want to get better at disability politics?

Since I’ve started teaching, I’ve tried to put as many disabled writers of color as possible on the “required readings” list. And one of my favorite blogs is Anita Cameron’s, Musings of an Angry Black Womyn. She’s always at the front lines of every political conversation. I would also recommend Geek Love by Katherine Dunn. It’s not really looking at disability in the traditional sense — it’s more sci-fi, and pride in being a mutant — but there’s still a lot of that power and hierarchy.

Also, for those interested in more disability rights and the present-day fight, I would recommend Good Kings, Bad Kings by Susan Nussbaum. That involves a bunch of kids who are institutionalized in Chicago, and they kind of break out of the institution. And in terms of disability and race, I would recommend The Story of Beautiful Girl by Rachel Simon, which takes place in the late ’60s/early ’70s and is about a young disabled white woman and a deaf African-American man who fall in love and are institutionalized. It follows them on this 40-year journey.

Sandy sits next to the author Simi Linton on stage at a conference. Sandy is on the left in a blue dress and white sweater, while Simi is on the right in all black except for an orange scarf around her neck.

Sandy with Simi Linton, author of My Body Politic

It’s great that you can recommend books across all genres with not-terrible disability portrayals — because I feel like nondisabled authors especially can go to a weird place sometimes.

Yeah, and usually because they center characters around their disabilities. They’re described solely in that context — maybe they’re in a wheelchair, or they have some kind of tic or something. Authors who are not disabled tend to pick out one stereotype and just wrap the character around it. It’s very one-dimensional, and they serve maybe one or two plot purposes of “overcoming” or “inspiring.”

Jodi Picoult, who I kind of can’t stand — I know I’m probably wading into contentious waters right now, because she is very popular — does this a lot. The entire family drama wraps around a child with a disability. You hear about the sacrifices, but you never hear about the actual disabled kid, what they want or what they’re actually saying.

When I’m not reading for work or for teaching, I don’t really read for disability. Like right now I’m reading Murukami, which I do about once a year, and I’ve been into graphic novels. I just finished the Paper Girls series, which is about 12-year-olds who fight alien monsters while delivering newspapers in the suburbs of Cleveland. It’s interesting and refreshing to be in this time period where authors are resisting in their own way. I also just finished the graphic novel American Born Chinese, which was amazing. That opened a whole bunch of floodgates in my mind.

“Reading has allowed a lot of empathy on my part, but also an awareness of the empathy I should have for myself. Because I’ve become more aware of disability as a political identity, that has been a very empowering act: to finally be okay, and sit with it.”

Would you ever write a book of your own?

I would like to — I think that would make four-year-old Sandy very happy. It’s always in the back of my mind. For a few years, I did have a blog where I focused on disability, and that was kind of the first time since I was a kid making up stories that I focused on my own life. I recognized that there were a lot of online spaces dominated by parents of kids with disabilities, and they’ll just kind of write whatever they want. Or it was from the perspective of teens using the space to vent, which was very much needed. But there was nothing from a young adult at the time, looking back on what worked and what didn’t. It was one of the first times I wrote very honestly about my disability — and because of that, I think a lot of my blog entires come off as a little inspiration porn-y. I look back on them now and I’m like “Ugh, this is so cringe face.”

I don’t know if my future book would be about disability, necessarily, but I would love to write a book someday. I think as a reader, it’s really that aspect of being curious about other people. Reading has allowed a lot of empathy on my part, but also an awareness of the empathy I should have for myself. Because I’ve become more aware of disability as a political identity, that has been a very empowering act: to finally be okay, and sit with it. So now I’m at the point where I’m reading new material and adding to those layers to my identity. The next step is “How do I communicate that to my family and my friends, and the students that I teach?”


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Carrie

Carrie's body is weird and she's making that work for her. She lives in DC by way of Los Angeles and has a conflicted relationship with social media, but you can follow her on Twitter and Instagram anyway.

Carrie has written 1 article for us.

4 Comments

  1. Hooray for queer disabled book-lovers! Also that pride photo is sooo cute.

    As somebody who is about 10 years into neuromuscular disease and just starting to dive into disability politics in a deeper way, I’d love to read more on “the politics of acquiring a disability versus being born with one.” Future AS columns or book recommendations both welcome!

  2. This is my new favorite article on Auto Straddle. Tons to think about and so much that resonates with my experience. Although I do not have a disability, I really lived in books and through the characters I found there so that I could escape my body.

    Like Sandy, I was trying to escape pain, albeit mine was mental anguish caused by my physical body being seen as male, while my spirit and mind were not. And like Sandy, I didn’t really see myself reflected in what I read until much later, and I never had a label for how I felt.

    Books helped me through so many dark times. They were my light – a safe place where I could try on different lives and borrow some of the strength I found there.

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