Queer Crip Love Fest: Love Is Showing Up

Over seven months of Queer Crip Love Fest, we’ve talked books, kids, pets, partners, breakups and more with some of the disabled internet’s most captivating queer folks. The goal of this series was to illustrate just how many forms love can take, no longer forcing us to wait for able-bodied saviors who’ve Just Learned So Much. We deserve space to speak out about our own passions on our own terms. I’m incredibly proud to have created that here, with all of our guests and all of you. And today, for the final installment, I could not be happier to introduce you to Nicole and Lindy, who have just the kind of story I want to end on.

Nicole had this to say about Lindy:

I love my girlfriend. She has perfect blonde hair and her laugh is the best thing in the world and she makes me feel like I’m full of glitter. We travel to see each other every month or so and count down every single day until we’re back together. We met on Tinder and she came to volunteer at the summer camp I worked at for a couple of weeks. She flew on a plane alone for the first time to come visit me.

I think it’s important to highlight that we’re both disabled in different ways; I have invisible disabilities, whereas she is legally blind and so we have two totally different kinds of access needs that we’re working toward mindfulness about. I think that disability has always been a part of our love; it’s a constant exchange, nothing is off the table, we’re always here holding each other and offering space for accessibility and everything else within our relationship. We acknowledge that love is growth and finding space to give each other what we need to make the world a more accessible place for both of us. It has changed my experience in love because I’ve never had someone love me the way that she does, and the way I love her.

Who wants to see them at next A-Camp? Me too! But for now, enjoy our big gay sendoff with a bit of everything: lifeguarding, Lesbian Processing™, text etiquette and yes, True Life.

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Why don’t we start with more about your origin story? I know that it’s adorable, but tell me from the beginning.

Nicole: So, Tinder. [Laughs]

Lindy: I messaged first. She didn’t respond for a while.

N: That’s because I was busy, first of all. [Both laugh] I was! It was the very beginning of the summer; we had just done the turnover from staff training to an actual session at the camp where I was working. I had just downloaded Tinder, and she said ‘Hey cutie’ with a smiley face, I remember that. And we got to chit chatting, and then moved over to Snapchat. I’d send pictures from being up too late in the office, just looking exhausted, wearing a fanny pack, clearly had not showered in days. Very camp manager. [Both laugh] Remember you were out at the bar, and you sent me something?

L: Yes, I was drunk.

N: Sent some great snaps. [Both laugh] Got real intimate, real quick.

So had you met in person at this point?

Both: No.

N: I was still in session, and you can’t really leave while that’s happening. Management doesn’t get breaks. So we hadn’t had the opportunity to meet in person, and then I kind of disappeared for a little bit.

L: For like, two weeks.

N: It was not two weeks! It was like, four days.

L: She’s lying, because I’m never that dramatic. I wouldn’t say it if it wasn’t true. [Laughs] So eventually I texted and said “If you don’t want to talk to me, I can take a hint” or something.

N: I was managing six program areas and about 150 kids, plus 50 staff. So it was legitimately a busy time!

L: And then you took your lifeguard class. Because you sent me a snap on your way there, and I was like “Oh, I’m a lifeguard instructor!”

N: And I was like “Well, that’s a really helpful thing to know, because we’re looking for one!” [Both laugh] So we still hadn’t met, but we did need another lifeguard. So I asked “Do you want to come to camp for a week?” and she was like…

L: “… yeah.”

Aww! So Lindy, you hadn’t even met her yet — how did you feel when she just asked you to come there for a week?

L: Well, I already had the week free; think I had something planned, but it fell through. So we met the day before camp started and went on our first date.

N: Yes. We went to Kerbey Lane — do you know what that is?

I don’t know what that is.

L: [Whispers] Oh, she’s missing out.

N: Yes, you’re missing out. It’s like IHOP but better in all the ways. You can get a swirl in your pancake, and they have vegetarian, vegan and gluten free options every day. And you can also get a carafe of mimosas for $12. I figured you should know that.

L: So we went on our first date there, and then I met all of her camp friends. I’m pretty good at going into random groups, and I thought I did pretty well. But they all had camp names and I was like “This is weird.” Then we went to the lake, and then we went to Dick’s Sporting Goods —

N: And then we went to Whole Foods and got some food in a box.

So you’re essentially just checking off gay thing after gay thing over the course of this one day.

L: You grabbed my hand at whole Foods.

N: I did. We held hands at Whole Foods. We do a lot of really gay shit. Get excited, this interview is about to get really gay.

“When one of us would walk into the dining hall or something, we’d text each other stuff like ‘Oh, your hair is so beautiful today!'”

So when you met in person, was the vibe definitely there? Because sometimes it can be tough with internet people, not necessarily knowing if you can make the transition.

Both: Yeah.

N: It was pretty immediate. And what was nice was that we’d had Tinder conversations, we’d had Snapchat conversations and we’d had a couple of phone conversations. So the vibe was there early on.

So you had to jump into this thing head first, because you were working together right off the bat. Do you think it was good to have total immersion with each other immediately?

L: I think it helped build a friendship instead of just a physical attraction. And also, seeing how each other interacted with other people, and how we are under stress.

N: In that environment, you’re gonna figure out pretty quickly who you do and don’t want to be around. So it worked really well on that level.

L: We’re not really allowed to be on our phones, so when one of us would walk into the dining hall or something we’d text each other like “Oh, your hair is so beautiful today!” Because we couldn’t really go up to each other and be cute either. But working together ended up being really good, because it taught us a lot about each other that we might not have learned until later.

And what about afterwards? Because then you have another big transition, so was it “Oh, I want to be with you,” or “Maybe this isn’t the right time,” or what?

N: We had made it official pretty quickly. We didn’t U-Haul it, but we did call it something pretty quickly. If we could have U-Hauled it we might have. [All laugh] But she did help me pack and go to the airport.

L: We bawled. I almost got my car towed because I got out and went inside with her. They don’t like that. [Laughs] But there wasn’t really a sit-down conversation. Because she wouldn’t have phone service in the middle of the woods in Vermont, which is where she was going, I wrote little letters to give to her, so each day she could open one. It would be like “When You’re Feeling Sad,” or whatever. And then she could open it.

Had either of you been in a long-distance relationship before?

N: I had.

L: Nope.

So what sort of agreements did you hammer out going into it?

N: That we are only with each other, and we’re going to make sure we keep up communication, agree to visits, switch off the visits. It was very clear from the beginning what our relationship was going to look like, and that if it needed to change, we could talk about it. It took practice. There were some moments of friction, some call out type things: “You’re not listening, you’re not paying as much attention as you could,” stuff like that. But what never changed is that we were happy to talk to each other.

L: I think part of it was we were scared because it was real. The stakes are so much higher. Plus you always wonder if it’s going to feel the same when you go so long without seeing each other. But we’ve been able to trust each other from the start.

“She asked curious questions in a respectful way, which people don’t do… She makes me feel like I have an open space to say when I need something.”

So you’re the first couple I’ve ever interviewed together, and also the first where both people have disabilities. I’ve actually never been in that situation, so I’m really interested to hear how it plays out in your relationship. The first thing I’m wondering about is disclosure, since that can be a huge issue when you’re meeting people online. Did you disclose your disabilities up front?

N: She told me that she was blind when I mentioned that I was applying for a job at a school for blind students. So we just kind of carried on, and I asked something like “So what does that mean for you? What does that do for your daily life? What do your access needs look like?” Not “Oh wow, so what’s it like?” in that morbid way.

L: She asked curious questions in a respectful way, which people don’t do.

Right! It would be amazing if more people did that for their partners — not “Tell me everything I feel entitled to,” but “Tell me what this is gonna mean for us,” which is a completely different question. Can you tell me more about that made you feel?

L: It was really reassuring. She seemed interested and not like she’s never been around someone with a disability before. She knew what to ask to make me feel open to want to share with her, and not have to justify myself or why I need printouts of PowerPoints, or to not use green marker on white boards or things like that. It was just really good. Sometimes I’ll feel attacked or like I need to defend myself when describing my disability to people; with her, that never happened.

On the other hand, when we would Snapchat, I could never read what she said because the font was so small, and I waited a while to bring that up. It was a couple of months until I was like “Hey, can I ask for a favor…?” And now we only use the bold, big fonts. When she forgets, she’ll just immediately resend the same thing with the font big. But she won’t take it to the extreme and overcompensate like people sometimes do. She makes me feel like I have an open space to say when I need something.

And what about for you, Nicole? Did you talk about your needs before or after that?

N: It’s never been a big, one-time disclosure, because I do have multiple things going on. There are some things going on with my body that are invisible disabilities, and then I have learning disabilities and mental health stuff. So it wasn’t that it came out slowly or that I wasn’t telling the truth, but there was a right time for things and a not right time. So it would come up like “Hey, this is a thing I usually have a handle on, but right now I don’t and I need support.” Dealing with both the physical and emotional exhaustion that comes from all this.

We made a lot of lists. She would sit on FaceTime with me —

L: And I would type the list for her. She would tell me about the things that she needed to get done within the week, so I’d send her daily reminders.

N: That was so helpful; it made things a lot more manageable. There was a window of time where I was feeling really depressed, and she helped me clarify what I needed to do, and whether I was taking my medication. That came up one time.

L: I didn’t mean it in a bad way, but one time I accidentally said —

N: We were arguing, and I was really upset. Instead of taking it as “Oh, Nicole’s upset and it’s okay to be upset” or whatever, it became “Are you taking your medication?”

L: For the record, I did feel awful about it!

N: But that is an important question! Are you feeling this way because you’re not taking care of yourself? That’s completely legitimate. It’s just a weird line to navigate, and a hard thing to ask, and a hard thing to be asked. Because you’re having these feelings, and you need the other person to know that they’re very real. So we navigated and worked on that.

It seems like you’ve negotiated the logistical access stuff really well, and that your needs and abilities complement each other. What about emotionally — how does it feel to be in a relationship with someone who understands access on a visceral level? Not “Oh, I should understand this concept because I’m a good person,” but “I understand this because I’ve been through it”?

L: It helps that Nicole had studied disability in school, so she knew how to ask properly. I’m pretty open; give me somebody who shows interest in disability stuff, and I will tell you what I need. So her giving me that made me feel like I could ask for those things without causing a problem. The knowledge to understand where I was coming from was really helpful.

Is there anything that’s challenged you about being in a relationship with another person who has access needs?

N: Not in relation to disability for me, really, beyond that moment of “Are you taking your meds?”

L: There have been more conversations around our ways of supporting each other. When I need support, it’s a mixture of “Please agree that this sucks” and a hug or a hand to hold. And then “Here are the things we can do to make you feel better.”

N: You also love a good platitude. [Laughs]

L: As you can tell from her tone [laughs], Nicole does not like platitudes at all. She likes “This fucking sucks, and I want you to understand that.”

N: I want her to listen and be there with me, rather than tell me about how it’s all going to be okay. Just for her to say “Yeah, that sucks, and I’m right here with you” — that’s all I want.

L: And I’m a fixer. So that was a huge issue that we had to figure out.

But that’s great — that sounds like a pretty standard relationship issue, and a really healthy thing, rather than this huge blowup around feeling like a burden, or whatever people might assume your problems would be.

N: That’s definitely true. We’ve gone through breaking up and getting back together, and it’s not because of any disability-related stuff at all; it’s been for the same reasons and followed the same path as it would even if that wasn’t a factor. It’s because things weren’t healthy, and then we worked on healing, and it was hard on both of us, and now we’re here. You just learn a lot about each other and come to that place of understanding.

We definitely had to negotiate how often to communicate and in what way, though, when we were first getting back together. Really be mindful of the line between what was and wasn’t healthy, and choose the medium carefully.

L: I sound like I’m in a mood whenever I text, because I put periods on things.

Why would you do that?!

L: People just assume I’m angry because I put periods on things! Which then does put me in a bad mood! [Laughs]

Rookie mistake. You can’t put periods on your texts.

L: That’s the real takeaway from this interview: don’t end your texts with a period.

“Love is in the things you choose to do and the way you choose to be and the people you choose to be with. I think it means that’s the person you give the last of your favorite candy in the bag to, the one you bring to a place you love and share it with them, the one you have total honesty and truth with even when you’re not quite so pretty in it. It’s being your gross self with someone.”

Okay, last big question: what does love mean to you? I want you to each answer this individually.

N: Do you want us to each leave the room so we can’t hear the other one answer?

If you want! I think that’d be cute.

N: You go first. [Leaves the room]

L: Bye! [Laughs] Okay, I’m ready. I think love means accepting each other with all flaws and positive attributes. Even when you’re in a bad mood, still loving them and letting them know that you’re still there and not going anywhere. Eliminating that fear of leaving is really big for me; knowing that they’re not going to leave when you have a bad day.

[Nicole comes back in]

We’re talking about you, go away! [All laugh, Nicole leaves]

That sense of security is big for me too, because it’s so rare to get from anybody. Knowing that you can show your whole self is such an important thing.

L: It’s like that in my family too; we can be mean to each other, but we know that we’re there for each other and aren’t going anywhere. I don’t mean purposefully, but getting into arguments and knowing it’ll still be okay. And I love having that security with Nicole. Because I’m not always great — no one is — and it means a lot to be able to let her know when I’m not having a good day, and have her say “Okay, thanks for telling me” and still love me is really important.

Great answer!

[From off camera] N: Can I come back now?

Yes!

[They switch places]

N: I think that love is in the things you choose to do and the way you choose to be and the people you choose to be with. I think it means that’s the person you give the last of your favorite candy in the bag to, the one you bring to a place you love and share it with them, the one you have total honesty and truth with even when you’re not quite so pretty in it. It’s being your gross self with someone. Lindy knows everything; she’s been around, y’know?

Love is taking the time, and just sitting there on Skype even when you’re not really doing anything. Love is sharing food, and asking for Sno-Cones and going to get them and then realizing you didn’t want them after all, but nobody gets mad because you spent time together. Love is showing up.

Wait. Can I tell you a secret?

Absolutely.

N: She was on True Life: I’m An Albino. And I bought the episode — didn’t just watch it on YouTube, I bought it. It was when she was in high school and going through her scene kid phase and it’s just so good. [Laughs] Love is being able to buy her awkward teenage moments on iTunes and watch them over and over.

Oh, this is amazing. I really wish I could put this in the interview, but I don’t want to out her MTV phase without her consent.

N: [To off camera] Babe? I have a question! [Laughs] You know how I bought the episode of True Life? Can that be part of this?

L: [Laughs] Yes, that’s fine. Thanks for asking.

N: See? Love is calling her over to ask if that’s okay.

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This is the last installment in Queer Crip Love Fest. View the complete series.

Queer Crip Love Fest: Nana’s Stories and Ginger Loaf

I’ve said it before and I’ll say it again: disability is a family issue. But all too often, that means misguided portrayals of disabled kids as “burdens,” the assumption that no family would want a disabled child, and insistence that nondisabled family members always know best. What about all the other ways disability can play out in a family —  as a source of empowerment, empathy and togetherness — particularly across generations?

To find out, I talked to Scout, a 22-year-old Māori queer person and aspiring politician living in New Zealand, who had this to say about love:

The first person that would pop into my mind is my great-Nana. She’s 93 (nearly 94), she has dementia and she lives in a secure dementia ward in a rest home that’s airy and bright and just like when she used to live with us. She’s been this one constant source of love and ginger loaf since I was tiny, and has watched me grow up. Because of the dementia, she’s the only person in my life who I will let call me by my dead name. Which is pretty big for me! Out of all her grandkids and great-grandkids, she remembers me the most often. I love the levels of unconditional love and optimism she spouts every single day. I love her fond stories about her childhood, and I love hearing them for the 14th time in a row, too. I really cherish every moment I have with Nana.

Read on for more about forging a political career while disabled, the importance of interdependence, and some excellent family lore.

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Tell me more about yourself, and especially your political ambitions!

I identify as takatāpui; that’s a word in Te Reo Māori (the Māori language) that these days is used as an equivalent to the word “queer.” So it means a Māori queer person. I use the term to describe my gender and sexuality all at once — without it I’m “somewhere sort of like a boy but not a man but also really gay but not into guys.” I’m disabled and mentally ill. I believe in a world where we can be all these things and still live safely.

I’m really good at communicating with people simply and clearly. I want to use those skills for good, so I’m going into politics. I’ve already run in one election — last year, I ran for mayor and city council and I actually came within 180 votes of election, which was remarkable given my age and budget.

That’s incredible; as an American, I can’t even imagine a young, brand new candidate coming that close, so I’m really impressed. You have a lot to be proud of!

The neat thing is that in New Zealand, because our Parliament is made up of all these different people from different political parties, being elected is actually pretty achievable here. You don’t have to be a privileged millionaire. In the next ten years I see myself in Parliament, with a portfolio in something like social development. I specifically want to represent the trans community and the mentally ill community in New Zealand because we have no one in Parliament who can truly amplify what we have been saying for years.

“Part of the reason I’m trying to shift my community work from this activist, volunteer level up to being an actual politician is that I can affect change in a way that is better for my disabilities — I can work with my strengths so that I don’t exhaust myself doing everything else.”

Politics is a notoriously demanding field — lots of traveling, long hours, staying on top of multiple issues at once. How do you negotiate your disability, which can also ask a lot of you, in all that?

The political party I’m in wants to see a Parliament where we can have members who jobshare. Their focus is that it would be great for parents who deserve to have a voice but need to raise their kids too. I think it’s a fantastic idea, but I’m coming from the place where if I could share a portfolio and divide my Parliamentary responsibilities between me and another person with a disability, we could manage our lives so much more sustainably.

Several of my friends are members of parliament, or MPs, and I literally just sit here and watch them work from 5 AM to 11 PM — or later, some days, and they don’t get days off, and I see the impact of that on them behind the scenes. It isn’t a sustainable role for anybody and I think our attitudes towards work are so inherently capitalist and need rethinking. Taking a day off shouldn’t be the end of the world! Productivity doesn’t trump health!

Personally, too, I hold multiple volunteer positions where I have an incredibly high level of responsibility with zero compensation for that work, and it’s really difficult to do in a sustainable way. I can’t afford the doctor’s appointments, medications and supplements to keep myself well, even in a country with almost universal healthcare. Part of the reason I’m trying to shift my community work from this activist, volunteer level up to being an actual politician is that I can affect change in a way that is better for my disabilities — I can work with my strengths so that I don’t exhaust myself doing everything else. Maybe it’s a pipe dream, the idea that Parliament could be easier on my health, but at least being reasonably financially compensated for my work would enable me to access the healthcare I need to do the work.

Do you come from a political family?

My immediate family aren’t particularly political — my parents actually have polar opposite politics to me in many areas. My little brother is getting more and more interested, especially as this year he gets to vote for the first time, but neither of us was really raised in political spheres. I think I get the politics from my dad’s side of the family; his grandma, my great-grandma, used to speak about politics on a literal soapbox, and she and her husband were both staunch unionists — much like me! And I recently discovered that on dad’s dad’s side I’m related to the guy who’s been mayor of a city further south since 1993. He’s pretty well-liked! So it’s in my roots, at least.

Speaking of your roots, I want to hear more about your great-Nana and your relationship with her. Do you have a favorite story of hers?

My Nana Vera is a little 93-year-old English woman who grew up in London and watched Queen Elizabeth playing in the backyard at Buckingham Palace from her doorstep. She made excellent ginger loaf back in her day, and now I have the recipe too. She came to live with us when I was maybe 13, and she was always busy — she loves “cooking, knitting and sewing,” that’s her mantra — but she also would ask my mum to give her literally anything to iron and she would stand in the lounge at the ironing board ironing scraps of fabric or tee shirts or pants just because she enjoyed it.

One day my family went out to the lake on our boat. She stayed home, but she made us a bacon and egg pie to have for lunch and when we cut it open, she’d left the fork that she’d mixed it all up with inside. When I tell her that story now, she finds it absolutely hilarious. Nana has lots of stories — the clothes she and her siblings would make for the rats that lived in their London house, sleeping overnight in the tube during World War II when London was being bombed, the swimsuit she knitted herself, and when she dove into the water and stood up to find the woolen swimsuit stretched down to her ankles. We hear these stories over and over again now, often with details swapped out for those from another story, and I think we all cling onto the stories now because that’s going to be what we have left of her soon. The stories and the ginger loaf.

And you said you’re the great-grandchild she remembers most?

Yes — she doesn’t recognize me anymore because I’m an adult now, so when I see her and she asks who I am, I have to say “Hi Nana, I’m your granddaughter, [deadname].” Last time I saw her, she talked about being the one who gave me that name (even though my parents were actually the ones who did), and it was a bit of a twang to the heartstrings because she doesn’t know me as Scout. She knows me as this awkward 10-year-old with messy hair, and I desperately want her to know who I am now because when she does get snippets of me, she is so, so proud of me and how far I’ve come. She doesn’t know about my disability or chronic illness, but sometimes sitting with her gets really difficult because part of dementia is when people start to get confused, and they get paranoid and scared, and it’s much like psychosis. I’ve experienced psychosis quite a bit, I know how terrifying it is, and I’m such an empath that I really struggle to know that I can’t just take her hurt away.

That’s really interesting, because nondisabled people say that kind of stuff to me a lot — “wishing they could take the pain away” or whatever — and I’m wondering if that’s true for you. That sentiment can mean such different things, depending on the context.

Yeah, wanting to just magic the hurt away is a weird feeling to be coming from me! But at the same time, we’re talking about literal distress here — like emotional hurt. And I think for many of us as disabled folk, we’ve come to terms with what we experience — but Nana’s experience of dementia is sort of different in that she doesn’t always know what’s happening or who and what she can trust. We can be empowered about disability at the same time as acknowledging that some of it really, seriously fucking hurts and no one should ever have to experience it. Given that I’ve experienced psychotic episodes where I have no idea what is real, what is not, and what I can trust and hold with me, I would not wish that terrifying experience on anyone and it breaks my heart hearing Nana echo those same feelings. There is a lot that Nana cannot do anymore and a whole lot that she struggles with; at the same time, she’s an incredible baker, she knits pretty well, she always says the right thing even when she’s not very with it that day. She is overflowing with compassion for everyone and everything.

On her good days, she’ll tell me how much I’ve grown; on her bad days, she’ll tell me it’s “lovely to meet you!” I love how excited she is to see me, every five minutes.

“I’m glad she doesn’t know, in some weird way, because it means I have one person in my life who just assumes I’m competent unconditionally.”

You mentioned that she doesn’t know about your disability; was that a conscious choice, or has the timing just never been right? Do you wish she knew?

She hasn’t consistently remembered who I am for the last five-plus years, whereas I only became disabled in the last three years. So somehow it’s not really come up because she’ll just forget five minutes later. I’m glad she doesn’t know, in some weird way, because it means I have one person in my life who just assumes I’m competent unconditionally — and being disabled, y’know, not often do you get to just do things without people second-guessing whether you’re capable of them.

Absolutely, and I think that’s a great point to make here. It sounds like becoming disabled gives you a lot of empathy for her, but also a clear understanding of the different ways disability and illness can manifest and change your life.

Definitely. Since becoming disabled, I’ve had to rely on people for things a lot more. And I think a lot of the time the role of your best friends can be blurred into the roles of your carers. And with that, your carers and doctors and your whole team become part of your group of friends too. It’s fascinating to me how those relationships have helped me learn what is and isn’t genuine.

How so?

I have a lot of trouble trusting people enough to feel loved, but when I do, it’s because I can read someone’s genuineness in how they interact with me. Working in politics, y’know, all my interactions with people feel so fake some days. I love genuine conversation, I love when someone trusts me and when they just have that feeling about them that I can trust them too. I love when people don’t expect me to do what they’re capable of doing, when people are conscious of my limits but don’t decide those limits for me.

“I really despise this idea that dependence is ‘inherently bad.’ Humans are pack animals; I’m so sure that we have never been this doggedly independent in our whole history.”

I think the idea of “dependence” can get unfairly vilified, even in otherwise progressive spaces and among other disabled people. Dependence is not inherently a bad thing or a sign of failure, and can in fact be a source of empowerment, I think. Do you agree, or not, or have anything you want to say about that?

I really despise this idea that dependence is “inherently bad.” Humans are pack animals; I’m so sure that we have never been this doggedly independent in our whole history. People are so individualist in their approaches to everything now, even in progressive spaces. I prefer more communal spaces, I like the ideology of “it takes a village to raise a child,” and I apply that to how I exist now. There’s no point beating myself up for needing a friend to come sit with me on tough nights, or for always having to ask a friend to open difficult jars for me. That will just turn into some gross circle of self-loathing, and I’m not here for that.

I think we have to be careful with dependence — when it becomes a situation where the other person can’t do anything for themselves anymore, then that’s a bit of a problem. But it’s important to be able to depend on things like facts and the knowledge that someone can help us and the people we surround ourselves with. We need to support each other to make positive change together. That also means we have to take self-responsibility, look after ourselves, and remember that means asking for help when the job gets too hard.

So with all that in mind, what does love mean to you?

Love means that you can put your trust into someone and mutually agree that you will keep each other safe to the capacity that you’re able. Love is not conditional; genuine love is someone who sticks around even after I’ve been stuck in bed three days, or blown them off four times in a row because I can’t cope with leaving the house. Love is when someone understands that my behavior at a given point is out of the ordinary, maybe I’ve socially withdrawn myself, and asks if I’m okay without getting angry at me and taking it personally. Love is trust, safety and home.

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!

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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.

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.”

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.

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?”

Queer Crip Love Fest: Who Will Be My Emergency Contact?

We’ve covered a lot of ground so far on Queer Crip Love Fest, including relationships of every shape and size. But what happens when a relationship ends? How does love look and feel in the shadow of a breakup, and how does disability impact that experience?

Katie, a PhD student living on the West Coast, has a lot to say on the matter.

I originally responded to you with my magical story of two queer crips who met and found love and acceptance in each other. Now that my story has a surprise ending, I wonder how much that acceptance and love was externally motivated. Because we crips spend so much time defending our right to exist on this earth, insisting that we have the same rights to romantic comedy love stories (that don’t end in death) feels like a stretch. Breakups are never easy and they usually involve ableism. That can be difficult.

Read on for the value of communal love, the joy in queer crip outsider status, and the problem with that whole “emergency contact” box.

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When we first talked about your recent breakup, you mentioned that for you, breakups have usually involved ableism. Can you tell me more about that?

With my recent breakup, I don’t remember a lot of our last phone call, but what I can remember stands out because I didn’t recognize the person who said it. She said she didn’t want to depend on the social safety net and was concerned that I would end up back on disability and dependent on her, which would be both a financial and intellectual setback for the relationship. Of course that was one explanation she gave out of many, and I can’t claim to this day to understand exactly what happened or what her real intentions were. I can’t presume to know. But this was the same person who shared vulnerability, family, tears and difficult medical decision-making while I spent months with her in the ICU.

What I can say is this direct mention of my disability and its capacity to strip me of financial independence, daily functioning and intellectual rigor hit buttons so fragile I’m not sure I knew they existed before. In retrospect, it seems only natural to push the most painful buttons we can imagine because we’ve felt them ourselves. That was where the magical love originated in the first place: the depth of understanding, shared language of experiences and lust and love born of watching one another’s resilience and successes.

The other side of that coin, though, is that you know someone’s vulnerabilities and are able to get to them immediately.

“Internalized ableism is not a character flaw — it is a result of living in this society, and the best we can do is try to recognize it, identify it and mitigate it.”

And vulnerability is such a sticking point, for exactly that reason. Has your disability affected how you’ve dealt with the fallout, do you think?

None of us show our best selves during a breakup. They bolster our defenses and beg us to preserve our ego. And again, I can’t stress enough how much this is magnified when we see daily threats to our life-saving healthcare, or able-bodied doubts that our crip lives are worth living. Internalized ableism is not a character flaw — it is a result of living in this society, and the best we can do is try to recognize it, identify it and mitigate it.

You know, “Who will be my emergency contact?” is a question that comes up after any breakup in my life. It’s a proxy for a lot of other questions, because each relationship is supposed to fit into that model. No one from my family of origin goes in that box; my family didn’t even go to see me in the hospital when we were on the same coast. Instead, I use the box for my villages of dykes, queers, crips, freaks, and the occasional open-minded normie along the way. Because that’s the village who will cushion my fall.

“Love is community over individual for me in a world that was not built to house my body or heart.”

Can you think of an example?

Recently, thanks to a case of crip burnout, I decided to “just go with it” when a specialist wanted to do a procedure on me despite admitting to never having heard of one of my systemic diseases. The idea of dealing with insurance and finding a suitable second opinion was too exhausting in my mind. A close crip friend intervened, telling me — in colorful language — just how bad of an idea that was. Then she asked for my insurance information and proceeded to call other offices. I was so moved by her care for me; ultimately it stirred up my own sense of deserving good care, and I found a new provider.

That’s a true friend.

My disabilities land me in the ER not infrequently, and if I’m hospitalized, crip friends are the ones who show up to visit me, humor me and my off-color jokes, be in solidarity when I need to advocate for different care or accommodations, and laugh with me while I laugh at myself and my stash of forms from non-compliant patient-ing. Fair-weather friends get strained out real quick when you have several chronic illnesses. Superficiality doesn’t stand a chance; things get real, fast.

Lovers come and go and illness flares and friendships are strained. Only conceptual community is forever. Love is community over individual for me in a world that was not built to house my body or heart.

“Queer crip love is politicized whether we like it or not.”

How has community love been most valuable for you?

Queer crip love is politicized whether we like it or not. When the personal is political, our ableist world is ready to deepen any chasm that might have been opening up already. Personal trauma becomes pretty inevitable. When a relationship ends, I often regret that I could not have preserved it for queer crip family love instead; it’s less intense, but also less subject to abandonment.

I think that for both queer and disabled people, community can provide the support that lots of outside people in our life can’t or won’t, whether out of fear or some other reason.

Living with disability teaches us to find our own purposes for existing, resisting, relating and loving. We get a crash course in finding external sources or ego boosts. My recent breakup was a refresher in this lesson. Regaining my sense of self as something in my core that cannot be as vulnerable to systemic, widespread ableism has been a powerful experience, strengthening my prior sense of self. It takes too much energy to build up ego walls against capitalism, ableism and everything in society that can dictate a sense of worth. And if we are counting our spoons, we don’t have that kind of time!

“Queers and crips don’t fit in this society, by intention, so we come up with creative workarounds. We think differently by necessity.”

In light of the breakup and everything else that’s happened, how do you feel about romantic relationships right now?

I do believe that intra-queer-crip relationships are valuable and beautiful things.  Of course, race, class, family support, gender identity, and tons of other factors shape how we experience them (and the world). I am acutely aware of how my class, race and educational privilege interact.

Right now, I’m finding myself deepening my love of myself and my entire communities through loving another queer crip. We’ve named body parts and bionic parts, laughed at ill-timed medical events, and given few-to-no fucks about external gazes. Queers and crips don’t fit in this society, by intention, so we come up with creative workarounds. We think differently by necessity. In my experience, that thinking outside of the proverbial box extends to romantic and sexual lives.

“We reaffirm our existence and resistance when we love each other.”

And finally, the behemoth of a question I ask everyone: what does love mean to you?

Love is messy and unconditional, honest and forgiving, indescribably joyous. Love is my cat climbing into bed with me for a fluffy cuddle when I need to hide out from the rest of the world for a bit. At this point in history, when our existences are threatened by policies and hate crimes and many of our communities suffer from deprivation of care, feelings of worthlessness, and traumas, we reaffirm our existence and resistance when we love each other.

Queer Crip Love Fest: More Seen Than I’ve Ever Felt

I write you from the hallowed halls of Terminal 3 at O’Hare International Airport, awaiting my return from the annual woodsy queer bonanza known as A-Camp. We had a glorious time workshopping, Variety Night-ing, and fleeing sudden thunderstorms, and now I’m prepping for the notorious Camp Comedown. This volatile period often involves physical illness/rebellion by a body you’ve neglected for a week accompanied by feelings of heightened disgust with the patriarchy, and it can be a rough ride. So to help ease us back down to earth, this week’s Queer Crip Love Fest features a bona fide A-Camp love story.

Al is “a fat, disabled, terminally ill, cis, Jewish lesbian” who works for a women’s geek interest site and had this to say about her partner, Katie:

“My partner and I met at A-Camp in 2015. We were instantly obsessed with each other, but she pursued me much more. We Skyped constantly, then we started dating, and now we live together! There is this moment, it’s just a second, between when we’re acting serious and when she’s acting like a wild monkey. She tries to make me laugh, to force me to enjoy my life. She is radiant light and I want to be blinded by it.”

May this sweet recounting of camp romance guide you through a truly disorienting time. Hang in there, friends.

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Tell me about your work!

I am co-editor of the games section of WomenWriteAboutComics.com. I started the section almost three years ago and recently hired my co-editor (who is INCREDIBLE) because my day job had become so demanding. Now I’m mostly handling the logistical aspects of the section (soon to be its own website), while spending my days as a Director of Communications for a really great nonprofit, OneTable.

How’d you get into gaming? As a relative outsider, I’m always curious how women in gamer and geek culture navigate that space.

I’ve been gaming my entire life. My parents were very young and very poor. My dad was still a teenager when I was born and he had a Super Nintendo from one of his friends. As soon as I could hold the controller I became addicted to gaming.

For a long time I wasn’t really cognizant of how treacherous the waters can be for gamers who are not cis hetero white dudes. I played mostly one-player games and wasn’t interested in joining the world of online multiplayer. It was when I started dating other gamers that the full scope of the gaming world came into focus. I suddenly became afraid of trying out certain games and of telling strangers that I played.

That’s part of why forming a games section at WWAC was so important to me. We have our own stories to tell and our own needs that are often neglected in mainstream gaming journalism. I’ve written for some of the bigger sites and they want a specific style and particular stories. I’ve chosen to not engage in toxic stuff and to help carve out space instead.

I want more of you and your partner’s origin story! It’s so cute and gay!

So! My partner, Katie, and I met at our first A-Camp where we were cabinmates. I had very recently been diagnosed with Antisynthetase Syndrome, which can be a devastating disease. It had been made clear to me that I might not make it to 40 years old. I was still processing when I got to camp and was looking forward to sort of a temporary reprieve from what had been a grueling diagnostic process.

The first night at camp we talked about what we wanted to leave behind for the duration of the trip. I told everyone about my illness, and about my fears surrounding it. I remember clearly announcing that I was not interested at all in finding someone to date. And, in an abridged version of this story, Katie and I both eventually left other relationships after months of daily Skype calls to be together. For the first while I was flying back and forth from Chicago to D.C. to spend a weekend here and there with her. It was never super stressful. We just fit. And our Skype dates went well into each night.

When she moved across the country to live together, it just worked immediately. We’re very similar in ways that matter, even though almost none of our interests overlap. (We’re also both slobs, which is important. Having just one slob in a relationship can be a struggle.)

At our second A-Camp, I spent a lot of the trip in bed. The travel was very hard on me, I’d gotten much sicker, and I ended up with a migraine. Katie reported back to me on all the activities I wanted to know about and was great at checking in without making me feel like I was bringing down the mood. Then, in our cabin’s Feelings Circle (totes normal), I shared that I was alarmed by how fast my lungs were breaking down and when it was her turn she told everyone that she was in it (our relationship) for good for all the eventual sponge baths and until I drew my last breath.

Like… she’s the love of my life. She makes me feel more seen than I’ve ever felt.

Did you go to camp expecting to meet someone? Did you feel like there was pressure to do that once you got there?

There was no pressure to find a relationship, but, for me at least, there was more opportunity for queer romance than I’d ever been faced with before. I had fully planned to just have fun and maybe make friends.

“I am learning to deal with my illness. It is swift in its changes to my body and my ability to do the things I once did. I am having to learn to be gentler with myself, to let go of things I do not want to do.”

I’m curious about the interaction between your relationship and your disability, especially its progressive aspects. Popular media like Me Before You romanticizes death as a form of liberation from disability, leans heavily on the idea of a nondisabled savior as part of that process, and goes on to make hundreds of millions of dollars worldwide. How do those kinds of narratives make you feel — do you relate to them, do you feel they represent you, or is it the opposite? How have you and Katie talked about those issues?

This is such a complicated and interesting question, and absolutely one of my favorite topics. My version of my disease is affecting me in a couple of ways: my lungs are failing, my muscles are breaking down, and I am constantly fatigued. Since it is a progressive, chronic illness, I am becoming “more” disabled with time.

My mother has been disabled for most of my life. She’s battled with a lot of complications of diabetes since childhood and became blind when I was very young. I grew up thinking disability looked like a very particular thing. I hadn’t yet met all of the incredible people I know now who live with disabilities and are happy and healthy. We didn’t have access to a lot of the resources that I now know exist (and that are at risk under the current government).

So no, I don’t see myself in any media narratives. Characters are given terminal illnesses either to kill them off or miraculously save them at the last minute. It’s never clear that sometimes terminal illnesses take a long time to kill you, that there’s so much life and joy and pain and fear and fun and frustration between diagnosis and death. Katie and I talk about this a lot — specifically about how much becoming increasingly dependent on her is going to suck, but also how much I love being alive.

How have you and Katie negotiated the reinvigorated healthcare battle? My girlfriend and I have had to have some Real Talks about where we’ll be able to live and all that, and it can get kind of scary, as I’m sure you know.

Well, it’s made me terrified of losing my job. Which, due to the progressive nature of my disease, eventually I will. I don’t know what we’ll do then. It’s a dark spot, a black hole. And while being together makes the terror less lonely, it doesn’t stop being terrifying.

I am learning to deal with my illness. It is swift in its changes to my body and my ability to do the things I once did. I am having to learn to be gentler with myself, to let go of things I do not want to do, to give up some of my favorite things (anything not on the autoimmune protocol diet, for example) in the hopes that it slows the steady march of my disease.

Also, I am happy. I’m in love. I love my jobs. I know one day we’ll need to move out of our dream apartment because I won’t be able to walk up the eight steps to the door. I know one day I’ll have to give up most of the work I am energized by because I won’t be able to stay awake long enough to be “productive.” And I know that I might be facing that day much sooner than I hope I will. Yet my life is so full of reasons to celebrate and to despair. You know, it’s life. I wake up each day in pain and discomfort, knowing it is likely the best I will ever feel. It makes me feel loved when I know that’s enough. That even though I can’t promise her a long life together, our time is enough.

“We live parallel lives that we choose to tangle together with love.”

Do you face a lot of misconceptions as a disabled and terminally ill person in a relationship with someone who is not? What is one thing you wish people understood about your dynamic?

Ha! I think people who don’t know us at all sometimes imagine she’s in a caretaker role. That’s simply not the case. We’re both busy people with very different and time-consuming interests. We live parallel lives that we choose to tangle together with love. Honestly, if anyone’s naturally the caretaker it’s me, not her. This year she declared to our group of close friends that she planned to be there until my lungs finally failed felt like the only moment in the entire world.

So what does love mean to you?

Oof. Well, I think it’s meant many things to me over the years. I have a lot of emotions and 90% are love. In my early twenties I fell in and out of love often, always desperate to remain friends and stay connected with each of my exes.

Then I was in a series of more serious, more long-term relationships and love seemed to mean that I continued to choose the other person and invest in our relationship. Now, not only with Katie, but in all of my relationships and friendships, I believe it’s something else. It’s a comfort and a choice, but also a surplus. I feel so whole on my own, now that I’m growing more into my skin, that love is a happy bonus.

Queer Crip Love Fest: We Make it Radical

On Sunday night, my girlfriend and I were at the airport (my favorite!) when a security guard asked us to clarify ourselves.

“Are you two related?”
“No, girlfriends.”
“Okay, so you guys are friends.”
“No, girlfriends. Like —”

Before I could confirm that she meant “dating each other,” he was already down the jetway, explaining to his colleague that “she’s traveling with her friend.”

Tale as old as time, really — especially for queer women. And if you add disability into the mix, you wind up with a dynamic that a surprisingly large number of people flat out fail to understand. That’s why I was excited to talk to Jax Jacki Brown, a queer crip activist, performer, writer, feminist, public speaker on LGBTQIA and disability rights, person I have long admired from across the internet, and proud co-owner of one of the sweetest and gayest relationship stories I’ve heard.

She had this to say about her girlfriend, Anne:

“We’ve been together for two and a half years, so of course we U-Hauled pretty quick and we have a cat. She’s a non-crip, but she’s an awesome ally. She’s read all the disability studies texts I own (which is a lot!). We talk about disability and queer rights, and she deeply engages. She gets it as much as someone who isn’t a crip can. Allyship is really core to our relationship. We spent 10 of our first 11 days together, and in true lightning-fast lesbian fashion, we’ve been together ever since.”

Enjoy our conversation on disability pride, how a wheelchair can be like a lover, and proof that poetry really does get you the babes.

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Tell me more about your girlfriend!

Her name’s Anne and we officially met online, on a queer dating website. But she had seen me perform poetry at a local queer venue a few months previous to me cruising her there. She says she thought I was super cute and funny with my queer crip poetry, but apparently during the break when she was trying to summon up the courage to come say hello, I had a bunch of people around me (it was my local queer venue so I knew people) and she thought “there’s no way she would be single.” So when she saw me online and I inboxed her she was like “oh, it’s the babe from poetry.” So yeah — poetry can get you the babes!

We talked for like a week online, then she got really drunk one night and sent me her number and we had a cute phone chat, then we went on a date and really haven’t looked back since! To be honest, in true queer form, we basically spent all of our time together from the start, but we did wait almost a year before I moved in with her and her cat. And that was almost three years ago now!

She is a proud fat, femme feminist. She is generous, kind, witty as hell (she loves a good pun), sexy and just easy to love. My queer relationships prior to this one have always been high drama, so it took some getting used to being in a relationship that just worked.

Now we live in the suburbs in Melbourne, Australia, with our cat, Boo, in an old rundown house that we are trying to fix up. It sounds super normcore and boring, but it’s not; we make it radical! It’s just super lovely. It’s my safe space, my home, and she is my space to land when I’ve been out in the world doing scary, boundary-pushing queer crip activist work.

Was she familiar with disability politics before meeting you, or did you introduce her to it? How’d you go about that if it was new to her?

This is a great question! So if I’m being honest, it took me awhile to talk to her about the social model of disability, which she didn’t know about before we started dating, and the reason it took me a while — whereas normally it’s one of the first things I talk about when I’m getting to know people as friends or lovers — is precisely because I really liked her. So it meant a lot to me that she understood how important my disability politics are and what my politics are, and I guess because I was already invested, there was a lot riding on “the conversation.” It took me a good couple of months to tell her about the social model and disability rights, even though she used to ask me about it. I mean, she knew that I was speaking at things and vaguely what it was about, but that was it.

“It’s knowing that she has my back — that not only does she get it, she will fight for it, she will fight with me. She loves me just as I am.”

Part of my reluctance and fear around “the conversation” had to do with my parents’ ableism. I feared having someone I really liked dismiss me in the same way they have. I mean, logically I knew she wouldn’t, because she has a deep understanding of power, identity and social justice. But that’s the effect of ableism — the fear was still there.

When we did finally talk about it, she said something like “I’ve never heard of the social model, but of course the world and society influences how you experience your body and interactions and places.”

Was there a moment where you knew that she really “got it” and that you were safe and understood, or did it evolve over time?

It’s a combination of all the moments where something ableist happens where she is there giving me that look that says “I’m here, I’m seeing it too, you’re not alone.” It’s in those moments after something ableist happens and we come home and I debrief with her, and she is able to articulate clearly and with rage why what happened was fucked.

One example, which I’ve written about before, is when we were at a dinner party and people started talking about how of course you would abort disabled fetuses. People were agreeing as though it was the only logical option, and then my friend finally turned to me and asked what I thought. So I tried to articulate why what was being said was deeply ableist and hurtful, and Anne clearly and calmly added to my points so I wasn’t the only voice in that room holding the weight of speaking up. Then we came home, she lay in bed and held me while we talked about what happened and asked what she could have done better, how she could have been there for me more in the moment, even though it was already beautiful not to feel lonely and isolated in those moments of speaking back to ableism.

The other example that springs to mind was last year when we went home to see my parents. They said a bunch of ableist things, and when I just couldn’t be in the room with them anymore — I just couldn’t continue to clearly and calmly explain why my disability is not a tragedy — she stayed and tried to talk to them and help them through the grief they are still resolutely stuck in. Then she came and held me and reassured me that the way that I think about my body, my identity, and my politics is valid.

It’s knowing that she has my back — that not only does she get it, she will fight for it, she will fight with me. She loves me just as I am.

“There’s this assumption that even if you’re calling each other ‘love’ and ‘honey’ and holding hands and behaving as a couple that of course you can’t really be lovers or partners — you must be friends or family, because a person with a disability can’t have a sexuality, let alone a queer sexuality.”

I love that allyship in all directions is core to your relationship. Can you tell me more about what that looks like?

To be honest, I think that she does a lot more ally work in the relationship than I do, but maybe that’s because ableism is more overtly present and unless publicly talked about than other forms of oppression. I think I am a good ally to her femme identity, but I could perhaps do better with allyship around fatphobia. I feel like our queer feminist politics are pretty aligned, and we back each other up and go on cute feminist dates to feminist events.

Do you deal with a lot of misconceptions as a mixed-ability couple?

People somehow assume that she’s amazing just for being with me, that she contributes far more than I that I do to the relationship, that she must earn more than I do, that I should be forever grateful, that one day she will wake up and realize that she is with a person with a disability (like somehow she hasn’t noticed) and leave me for someone “better” — and of course that person is an able-bodied person. Oh, and we get the comment all the time “you two look like sisters!” to which we’ve started saying “yeah, sexy sisters!”

You know, there’s this assumption that even if you’re calling each other “love” and “honey” and holding hands and behaving as a couple that of course you can’t really be lovers or partners — you must be friends or family, because a person with a disability can’t have a sexuality, let alone a queer sexuality.

I mean, you know all the stuff. I’m sure you and your girlfriend get it too.

Yup. Can confirm.

“She says ‘I like how you have a sound, that’s different from how everyone else sounds. I like that I can hear you coming home, wheeling up the ramp, moving about the house, and know it is you.'”

I’m really interested in your relationship to your wheelchair, and how that factors into your relationship with Anne. Can you tell me more about that?

I love my chair; it’s a part of me, it’s a part of my identity, it’s a part of my personal space. It’s how I move through the world, it’s how I am perceived, it’s almost an extension of me. It’s not just an object; it’s almost like a lover. I wrote a poem about it around five years ago called “Do you have sex in your wheelchair?”

To be honest, I’m tired of my current chair — she is getting old and I really need a new one, but the process in Australia is so arduous and long that I always put it off until they literally start falling apart.

Anne is always very respectful of my chair; she’s careful when taking the wheels off, putting it into cars, or carrying it upstairs to be kind and gentle, because she knows how much it means to me, and also that I only have one, so it’s precious. She says “I like how you have a sound, that’s different from how everyone else sounds. I like that I can hear you coming home, wheeling up the ramp, moving about the house, and know it is you. It is familiar and beautiful. I like how you move in your chair, and how your body has a rhythm and sway to it that is just yours.”

What has the process of cultivating disability pride been like for you?
I’m sure you’re familiar with Laura Hershey’s poem “You Get Proud by Practicing,” where she says:

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.

You get proud
By practicing.

I think it is so true — practicing your pride in a society that tells you that you should be ashamed is an act of resistance and resilience. As the late and great Stella Young said, “This is possibly the most important thing anyone will ever tell you. The journey towards disability pride is long, and hard, and you have to practice every single day.” So I make sure I practice and surround myself with people who value and love me. I’m also profoundly lucky to do work in disability rights, and get paid for most of it these days.

Being queer and disabled has allowed me to live life outside the box of social expectations. It’s enabled me to deeply question society, bodies, power, identity, and to work out what I really think is important to value, what I’m really passionate about, what I believe in. It’s enabled me to become unapologetic and proud.

I try and proudly practice calling my body home, to truly inhabit my body, to feel what it feels like to live inside these muscles that bend and curl, and to feel proud of it, and no longer ashamed. This is queer crip pride.

So with all that in mind, what does love mean to you?

To me it means being seen, being truly seen — and loved — for all that I am. I think because of the effects of ableism I had been really damaged about what love could look like. The love I had experienced in the past had always been conditional and never a constant, but could always disappear without warning and be withdrawn at any time. The love I get from family has been tinged with their grief about my disability, and so it was never inclusive of it in a truly accepting and positive way. Love should push you to the edges of yourself and give you courage to go to those edges, to do the things that expand you and make you grow — but it should also give you a soft space to land, a sense of comfort and belonging and acceptance. It should call you home.

Queer Crip Love Fest: Insider/Outsider

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.

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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.

Queer Crip Love Fest: Parenting at the Intersections

The conversation around parenting and disability often follows the same tired path: nondisabled parents, disabled child, and a whole lot of “life-changing lessons.” But what about disabled people who decide to have kids? We’re not hearing their stories often enough — to the point that some able people might not realize they’re out there. Fortunately Lala, a 22-year-old nonbinary mother living in Florida, has plenty to say about that.

“I have Ehlers-Danlos Syndrome, Type 3. I’m a mother to a two-year-old boy, and I have an amazing and supportive cis male partner. Right now, however, we are fighting to reunify with our son due to a domestic incident. Being disabled is making the battle to get my son back even more difficult.

After I had my son, I got back into reading. Reading helps me cope with the fact that I have limited exposure to the world around me because of my physical disability and mental illnesses. Reading helps me to escape the dark mindset I have, and even helps me to dream peacefully.”

Read on for their insights on parenting while disabled, being out at work, and the importance of a good book.

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Let’s start with your fiancé. Where did you meet?

We were part of a mingle group on Facebook — so I guess you could say it was kind of an unconventional way of meeting. But for a lot of disabled people like me, it’s not. It’s more than conventional; it’s perfect. I was actually with my ex at the time, so we were just Facebook friends. And after I went through a bad breakup with that person, he and I started talking seriously.

I was supposed to go to an Orlando meetup, and he was going to come from Miami. But then I got my first job, and thought I was going to be too busy working to make it. And so one day this big group of people, including him, made a surprise visit to my job. This is going to sound so cheesy — I’m not gonna say it was love at first sight — but when we actually met in person, something definitely clicked. It was a pretty fast move, but I felt it was right. We have a son now, our two-year-old.

That’s so great. Do you think it’s more common for disabled people to meet their partners online?

I don’t think it’s specifically about that; there’s a multitude of reasons why someone will befriend someone or meet a partner, and one of them is being disabled. For queer people, too, it’s a lot easier to find like-minded people online. There’s always the chance that we could get bullied, killed, whatever — any of those fears people have about outing themselves.

Even then, I’m afraid to tell some people that I’m disabled, because I don’t know what their reaction will be. Usually, the reaction I get is “Oh, but you don’t look disabled!”

I get that all the time.

Yes. So it made sense for me to find my friends and my fiancé online. It’s been a lot easier for me to be taken seriously online. When people find out how old I am, for example, they’re like “I wouldn’t have guessed! You’re so wise and mature for your age!” But offline, it’s much harder for me to be taken seriously. It’s a lot harder for me to find friends, it’s a lot harder for people who are older to take me seriously unless I’m with him.

I get teased for having a “chipmunk voice.” When I do disclose my disability, some people will really patronize me and treat me like I don’t know what I’m talking about or whatever.

Yes! I’ve always found getting people to take you seriously as an adult is one of the most difficult things. There’s a temptation to treat disabled people as perpetual children.

Once, a woman thought I was my own fiancé’s daughter because I was walking with a limp.

Whoa, what?

Yes. That was kind of embarrassing. I mean, there’s an age difference between us, but we look nothing alike. So… yeah.

You’re actually the first person I’ve talked to for this series who’s a parent. It can be such an emotionally charged thing for disabled people to have children. Talk about not getting taken seriously — parenthood is something people assume we’ll never want or be able to do successfully. What’s your experience been with that?

Before becoming a parent, I looked at parenting through rose-colored glasses — with an able-bodied person’s perspective. It was drilled into my head by other people, well-meaning as they were, that I probably shouldn’t have children. Because “Oh, what if you pass it on to them?” or “Oh, what if it’s too hard on your body to carry the fetus?” “What if you can’t pick up your child?”

Honestly, when I got with my fiancé, I was just like, “fuck it.” My symptoms are debilitating and they’re going to get worse as I age. I’d rather be a mom now than later. And plus, I’m fortunate that I got my diagnosis when I was nine; many, many people who have uteri don’t discover that they have Ehlers-Danlos Syndrome until they’re either pregnant, going into pre-term labor, or the baby is older and they’re also having issues.

Parenting while disabled is very interesting. We actually purchased our first baby carrier at Target when our son was about five months old. I only got to wear it one time; we take public transit everywhere, so usually it was Dad always wearing it, or we had the stroller. The one time I got to wear him was in a supermarket. He was so heavy! And I knew I couldn’t walk with him in it, so I sat down in the grocery scooter and strolled around the store carrying him. The looks I got were mixed; there were some, like, “Should she be doing that?” or “Aw, that’s so cute!” but in a very patronizing way. Or “… is that her baby?”

Do you find you have to justify yourself as a parent?

When I take him to doctor’s appointments, for example, I almost always have my fiancé with me. Again, we take public transit, or when we were on Medicaid, we got free transport to and from the appointments. So I didn’t really feel the need to justify myself in that situation. But when I was pregnant, my first OB didn’t take me seriously. I said that due to the nature of my disability, I should be labeled high risk. He didn’t really pay attention to me at all. I kind of felt like I was in a drive-thru: “Lemme see how you’re doing, baby’s good, okay great, get out. Next!”

It’s really hard for me to advocate for myself, and at that point my fiancé didn’t know much about EDS. Now he does; I even have him carrying around a little EDS information thing in his wallet.

If you talk about disability as a family issue, people assume that means the kid has the disability — and also that it’ll be a burden on the family. But it’s so much more complex than that.

That makes me think of something else I’m really hoping to see: more changing tables in gender neutral or men’s restrooms. They’re pretty common here, but this is a major city; if you go further out into smaller towns, they get a lot harder to find. Obviously as my son gets bigger, it’s harder for me to change him. So it’s almost always been my fiancé that has to change him, and some public restrooms just do not have changing tables. It’s unfair and absurd. There are so many reasons why every public restroom should have a changing table!

“We don’t have our own bathroom, we don’t have a kitchen, we don’t have a sink, we don’t have a toilet. Everyone in the building shares one microwave. I’ve noticed that a lot of us in this building have chronic illnesses, disabilities, or mental illnesses. There’s a lot to say about that.”

Do people ever say that it’s “so inspiring” that you have a kid?

To be honest, my fiancé kind of did at first. But he’s really been open to learning and listening to what I have to say. He says I’m inspiring for other reasons. But beyond that, no, I haven’t really been praised for being a parent and being disabled.

That’s surprising in a good way, actually. I would think people would get weird about that.

I’m sure they do. But I have to disclose my disability because I “don’t look like it,” so I’m able to kind of blend in. I’m sure if I used a wheelchair or my scooter full-time and had my son walking around beside me, people would say it’s “such an inspiration.” I wouldn’t be surprised.

Right now my son is in foster care. We’re supposed to be living somewhere that accepts children later this month, so that’s kind of a tight deadline to find a place. And we’re in a hard situation; I just started working my second job ever, and it’s only minimum wage. My fiancé works in IT, and people in that field typically make good money, but it’s been hard to save up for a place. Where we live is pretty much a shit motel. The landlord is overcharging everyone here. We don’t have our own bathroom, we don’t have a kitchen, we don’t have a sink, we don’t have a toilet. Everyone in the building shares one microwave. I’ve noticed that a lot of us in this building have chronic illnesses, disabilities, or mental illnesses. There’s a lot to say about that.

I’ve been having to unpack my own ableist thinking, and nothing’s been more eye-opening than living in this building and talking to the people here. Some people I talk to on a regular basis are the very same people I would have judged, or thought they were weird or odd or peculiar, and just not wanted to associate with whatsoever. But upon knowing who they are and why they’re struggling — often because they’re disabled and can’t find work, since no one wants to hire us — it’s made me reevaluate the way I looked at ableism.

Disability has such a harsh impact on employment and housing. Even though it’s technically illegal not to hire someone because of their disability, there are so many loopholes in the way that law gets applied.

I honestly go into work thinking “Could this be my last day?” Because even though my employer seems very understanding, when I finally disclose my disability, I’m afraid I’m just gonna go in and they’re gonna say “Sorry, we have to let you go.” And I’m not gonna know why, and I can’t prove that they fired me because of it. They can also fire you for being gay here.

So are you out as queer at work?

Several of my coworkers know that I’m bi, but not nonbinary. I still go with she/her pronouns. They already know that I’m disabled, and at least I can kind of present as cishet, but there are things I have to think about. Which would I rather disclose, and which would I rather keep hidden?

How long have you been out as nonbinary?

I’d say a little over a year now. I kind of kept it hidden until the Pulse tragedy, given how close it was to home. I went to an arts school that a lot of queer people tend to flock to, and I was worried, checking on Facebook to see if any of my friends were there. Hearing that it was on a Latinx night, being Latinx, it just made it even worse. I drank a lot the night after it happened, and I was freaking out.

I was staying at my friend’s house at the time, and I came out to my fiancé over Messenger. He told me that he would love me no matter what, and he said he was gonna be there for me until the end and meant it. I don’t mind that he still presents me as his wife, but he definitely recognizes that I’m genderqueer, and he’s been very understanding. I’m kind of hoping that he’ll help me get my first binder, because I really want one.

That would be awesome! It’s great that he’s been understanding. That’s by no means a given.

He was a lot worse when we first started dating; he was definitely more on the privileged side, to the point of not recognizing it. But I’m getting through to him. He’s started to help me pick out my haircuts — like now, I have an undercut, and he helped me pick that out. He gives me tips on how to style it and make it look better. It’s awesome.

There’s been some moments when we’ve really clashed, or he’s made transphobic statements about somebody else. But typically, we’ll have a quick argument, and later on or the next day have a heart-to-heart. And he’s been very understanding and perceptive to what I’m saying. It’s kind of hard for people who have intersecting, marginalized identities to find someone who can be wholly enlightened or totally aware. There’s always going to be those internal biases they don’t know that they have. So I try to think about it as “How can I frame this to help him see that wasn’t okay?”

“I love being able to read something that is fabricated from the author’s imagination. It’s amazing, it’s really a special craft.”

I also want to talk to you about reading. You mentioned that you hadn’t been reading in a while because of school, which is something I definitely relate to, and then you got back into reading after your son was born. Was it because you were reading to him, or just because you realized it was time?

Both. We got word books for him, and I was reading those almost every day. And I was like, “As much as I think these are really cute, I’m getting kind of bored reading the same thing over and over. I should really get back into reading.” So I checked out chapter books for children at the library. The first one I read to him was The Last of the Really Great Whangdoodles. I love that book. I hadn’t read it since I was in third grade, and it was such a treat reading it to my son. It was also a fantastic choice to get back into reading.

I’ve set reading goals for myself ever since my son was born, and I’m trying to reach those goals by New Year’s Eve. I’m trying to read 52 books, one every week. I’m on track so far.

Media representation of disability, especially disabled queer people and people of color, is sorely lacking. Have you ever read a book that you felt represented you in all of those identities?

I’ve felt I had to pick one identity and sacrifice the others. There are books with disabled protagonists that I might want to read, but they’re not really available in the library. I can’t remember the last time I looked up a book about a disabled character. I’ve kind of given up; it’s disheartening. I don’t tend to see books about characters who use wheelchairs or canes or have hearing aids or anything.

The Absolutely True Diary of a Part-Time Indian by Sherman Alexie is about a kid who, as he describes it, has water on his brain, and he’s intellectually disabled. Alexie is Native American, and so is the character. So it was very interesting to see those identities intersecting. The character describes how he didn’t feel at home on his own reservation because he was going to a white school, and he didn’t feel like he fit in at school because they were being racist toward him. The kids at home would call him retarded and everything, and it really tore me up, because I know what that’s like.

Ursula Le Guin said that stories are lies that tell the truth, and I think that’s very true. That’s exactly why I read. I love being able to read something that is fabricated from the author’s imagination. It’s amazing, it’s really a special craft. I love being able to see things from different perspectives, which I really think has helped me be more mindful of other people and understand where they’re coming from. Whether it’s fiction or nonfiction, I think that applies.

Reading has been an amazing way for me to just step outside my world for a second and be able to refresh my perspective. Especially since the election, it’s been helpful.

“I think love, for the marginalized person of intersecting identities, is being able to see past your own biases you’ve internalized to love that person and recognize difference. For a privileged person, it’s to be able to love unconditionally — because they should be loving unconditionally.”

What’s it been like, at the intersection of all of your identities, to live in this political environment so far?

It’s a complicated question, obviously. Because I can’t lie and say I’ve been harassed or discriminated against; I am light-skinned, and that affects things. I haven’t really experienced harassment, and I hope I don’t. I live in Miami, which is a diverse city, but a lot of people still voted for Trump. And even though I haven’t experienced harassment or racism personally, I can’t say that it doesn’t happen. A lot of white people, and even light-skinned people of color, tend to get that wrong about Miami. They think that because Miami has many different cultures and is very diverse, racism is not a thing here. That’s absolutely false.

I’m definitely not oblivious to the things going on in this state. I live right outside what used to be a predominantly black neighborhood, and now all you see are white people. It’s horrible how gentrification took over. They’re trying to convince people that this is the place to be, when there are homeless people sleeping at the foot of all these new paintings and murals and whatever. I experience more direct racism online than I do in my day to day life, but it’s very much alive here.

How can America be great when it was never great for people of color, for disabled people, for the sick, for the poor, for people with uteri? It just never was.

And finally, the big question I ask everyone in this series: what does love mean to you?

That’s honestly a tough question. Because if I say love is unconditional, and then one of the ways I cope is by saying “I hate my oppressors,” people will be like “You need to rise above and be better than that; otherwise, you’re just as bad as they are.” Okay, but there’s a power imbalance, so that’s not really true.

I think love, for the marginalized person of intersecting identities, is being able to see past your own biases you’ve internalized to love that person and recognize difference. For a privileged person, it’s to be able to love unconditionally — because they should be loving unconditionally.

Queer Crip Love Fest: Love Sounds Like Purrs

Last time on Queer Crip Love Fest, we revealed my personal biases and came down firmly on the side of Team Dog. But because I know my audience, I concede that cats, too, must have their day. Leah* is a 43-year-old software engineer and cat mom, and she reached out to me with one of the most powerful stories we’ve featured yet.

I was raised in a very abusive household. I survived incest by both my father and mother, and at 17, I escaped by going to college 600 miles away. I got fibromyalgia the spring of my freshman year. I struggled to keep up with classes because the alternative was moving back in with my parents, which I ended up doing after sophomore year anyway. A few months later I met the man I ended up marrying. He was abusive but he supported me when I was unable to work or go to school. After almost 20 years with him, I managed to escape and I’ve lived on my own since. It’s a constant struggle to support myself but I’m happier than I’ve ever been. I feel like for the first time in my life, I can finally be my true self. I consider myself a baby queer because I’ve only recently come to grips with my asexuality.

I couldn’t have made it through the years of therapy and coming to terms with the incest without my cat, Mr. Pants. I adopted him when I first moved in with my ex. He wasn’t the world’s smartest cat but he was incredibly sensitive. He could be sound asleep in another room but if I started crying he’d come get in my lap and purr until I felt better. The year he died, I adopted Sweetie Pie, another big, beautiful tomcat. He’s not quite as empathic as Mr. Pants, but he earns his name every day.

This was most expansive QCLF interview to date, and we covered so much more than I was able to include here: navigating the workforce while disabled, the relief of a correct diagnosis, internet friends, service animals, and more. Because this is Autostraddle, I’ve condensed our conversation to focus on queerness, disability, and cat stories.

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I love that you consider yourself a “baby queer.” What’s it been like to come out as asexual later in life?

I’m not sure what it’s like to come out at the “usual” time of adolescence or early adulthood; not that there’s a typical journey, but mine’s certainly unusual. One thing that’s difficult to understand about sexual assault and abuse, like what I’ve been through, is that humans are wired to respond to certain touch no matter how we may feel emotionally. All too often perpetrators use that against us. It’s a painful and difficult thing for victims to cope with, this feeling that our own bodies have betrayed us.

For a long time I didn’t even know asexuality existed. Then I thought that I couldn’t be asexual because for me it’s not all asexual, all the time. I still masturbate now and then. I can imagine having sex but if given the opportunity I couldn’t work up the enthusiasm. I’d rather have a deep, thoughtful conversation or tell dirty jokes until sunrise.

I haven’t come out to many people. Most people assume I’m straight, especially if I mention past hetero relationships. I have a lot of straight privilege, and I know it. On the other hand, asexuality comes with its own set of stereotypes. People assume that we’re missing a precious piece of our humanity. I’ve heard people say that if they lost the ability or desire for sex they’d want to kill themselves. There’s a lot of crossover with disability there, too. Like somehow our lives are less than or not worth living, when we know there’s so much more to life.

I get that a lot with disability, too. My disabilities – fibromyalgia, depression, and anxiety – are invisible. When I tell people I get a lot of “but you look so healthy!” or “but you seem so normal!” First off, what the hell is normal and why do I need to be it? Second, how am I supposed to look? Do I have to be in a wheelchair? Do I need a cane? What will it take to convince you I’m not making shit up?

Oh yes, been there. So many times!

My therapists have always come at my sexuality like it’s something I needed to work on and heal from. To some extent that was true — I had a huge amount of guilt and shame I was carrying around that actually belonged to the people who hurt me. I remember one therapist saying “It’s enough that you want to want to have sex.” I’m sure that’s very useful and reassuring for most victims, but it messed me up. Even now, I want to want to have sex. Every movie, TV show, or romance novel is telling me I want to want to have sex. Of course I want to be like everyone else. Of course I want to please my (hypothetical) partner. And yes, even an asexual person can enjoy sex now and then.

“People assume that we’re missing a precious piece of our humanity… There’s a lot of crossover with disability there, too. Like somehow our lives are less than or not worth living, when we know there’s so much more to life.”

My sexuality isn’t something I need to overcome. It’s not something that’s broken or missing or was stolen from me. As far as asexuality goes, the psychology community is still stuck in their old attitudes about queerness being a mental illness.

Even in disability communities, people can throw “asexual” around like a slur — as if it’s only a negative stereotype, and not something we could actually be.

I have a lot of the gold-star asexual traits that keep most people from questioning my sexuality: I’m cis, socially adept, I’m attractive, I’m sex-positive, I’ve had hetero sex, and I look under forty. On the other hand, I’m a disabled victim of sexual abuse — but people don’t know that unless I tell them. For years, therapists and psychiatrists told me that that when I got better I’d feel sexual again. When that didn’t happen I felt like I must have done something wrong. It wasn’t until I felt like I’d healed from most of the abuse and I still didn’t want sex that those feelings were valid.

“I could be ace as fuck one day and attracted to someone the next; it doesn’t change who I am.”

It’s kind of like when I first got sick and everyone told me I was making it up or just lazy and I started to believe it. There’s so much societal pressure to be straight and to want sex, of course we feel like rejects or losers when we don’t fit that mold. I think non-cishet people are better at thinking outside the box because from the get go we’re forced to question society’s idea of what love means. I could be ace as fuck one day and attracted to someone the next; it doesn’t change who I am.

I want to talk a little bit about dating. As a disabled person the thought of dating, especially dating cishet men, is exhausting. Disabled people are twice as likely to be victims of interpersonal violence and I never want to go through that again. I believe my ex targeted me because of my disability. Intimate partner violence is all about power and control, and it’s easier to control someone who’s disabled.

For most of our relationship my ex didn’t want me to work. Over the years I learned to cope with my disabilities, healed from my trauma, and was better able to function. A few years ago my ex decided that I should work and he should stay home. I don’t entirely know why but he seemed to think that it was something I owed him, since he’d done it for me. In a healthy relationship people don’t keep score. We don’t look after our partner because we expect to be compensated down the road.

In a way that was the last straw. I decided that if I was going to work that hard, it would be for me.

I don’t think I’m in much danger of becoming a victim again. For one thing, I know what to look for. More importantly, for the first time in my life I have self-esteem and I don’t take shit from anyone. But it’s still exhausting to be on guard and be ready to fight back if someone crosses my boundaries.

“I decided that if I was going to work that hard, it would be for me.”

Does disability affect how you experience love also?

Being disabled, especially becoming disabled as a young adult, has taught me things that most people don’t learn until later, if at all. When I first got sick I used to make plans for all the wonderful things I’d do once I got better. It took some time, but I realized that life is too short to wait to do wonderful things. Maybe I can’t go skilling or backpacking the way I used to but I still love the outdoors. Instead of backpacking I’ll go for road trips, long drives through the mountains or the prairie or the desert and see the beauty of this country. I love to garden and bake and I even make berry jam. My garden is pretty accessible, too. I grow tomatoes and other crops in a self-watering planter.

At least with friendships, I find that being disabled forces you to find out who really cares and who doesn’t. I can’t predict when I’m going to feel good and when I need to stay home and rest. That makes planning ahead, even for the weekend, tricky. The friendships that lasted are with people who listened when I said, “Even though I keep canceling at the last minute, please don’t stop inviting me.” Even though it’s hard for abled people to understand what my life is like, the ones who try are the ones I keep around. They don’t say stuff like, “Well you made jam all day last weekend. I can’t see why you can’t come to my party.” They figure out that disability isn’t black and white; it’s a continuum.

“Even though it’s hard for abled people to understand what my life is like, the ones who try are the ones I keep around.”

What kind of support did you have in recovering from trauma?

I’ve been in therapy for about 20 years, so I have a lot to say about that. When I first started to recover my memories, I was very suicidal. I didn’t want to die but the pain was so bad I felt I couldn’t go on. Plus I had become disabled only two years before, had to drop out of school, was stuck living with my abusive parents—it was a mess.

I spent eight weeks, first inpatient and then outpatient, in a unit for victims of sexual trauma. The program was amazing. I’m sure I wouldn’t be alive today if I hadn’t had some kind of help. There’s something so powerful and healing about sitting around with other victims, swapping stories, making the darkest of jokes about it, and laughing your asses off.

I’m glad you had a positive experience; I know a lot of disabled people (including me) have complicated relationships with hospitals and that kind of thing.

Overall, yes. Day by day, it was difficult. That hospital was excellent but there were issues. A friend of mine got her hands on a plastic knife and scraped the hell out of her shin. The nurse decided she wasn’t going to treat it because it was self-inflicted and it got infected. The very first morning I was there, the nurse came in while I was sleeping and took blood. Can you imagine doing that to a victim of violence? I woke up with a needle in my arm and freaked the fuck out.

What? Ugh. Although truthfully, I can’t say I’m surprised.

That’s one thing I’ve learned as a disabled person. Even when I was on Medicaid I could find good health care providers, but I had to go look for them. I don’t think most people get that—how it’s a full time job just to get and keep public services when you’re disabled.

That gets overlooked so often.

The best therapists I’ve had are the ones who push me. Any good therapist will be supportive but the best ones really pay attention to what you’re saying — and not saying — and challenge your assumptions. They get you to think about how you think. It’s the reason I’ve been able to heal from so much trauma, to learn to really love myself and have healthy relationships with other people.

I wish I could bring a pet to therapy. For years I brought a stuffed tiger with me instead. I’d take that tiger with me when I had to get well woman exams, too. To hell with what people thought of a grown person carrying around a stuffed animal. Mr. Pants was jealous of that tiger.

I love that animal companionship has been so powerful for you. Tell me about Sweetie Pie!

He has his own origin story. Back in 2008, I moved from Colorado to Iowa. The day after my ex and I moved in, Mr. Pants got sick. He was only 13, but he died of cancer two weeks later. I was devastated. He helped me get through the worst of the healing from my childhood trauma. He was super special.

I started volunteering at my local animal shelter in Iowa. (They’re awesome and deserve a shout out: the Animal Rescue League of Iowa in Des Moines.) One day I was visiting with the cats and spotted this big, beautiful guy. I opened the cage and started to pet him. He immediately turned upside down and licked my nose. It was like he’d decided I was going to be his mom now.

He’d had a rough time of it, too. I don’t think he’d ever been inside a house before — he was fascinated by the toilet! He was really scared of dogs and thunder. So I was gentle with him and he was gentle with me and the rest is history.

Oh gosh, that’s wonderful. What is it about animals that feels so comforting and healing?

I learned from an early age that it was dangerous to trust people. Because of severe allergies, I couldn’t have a pet until I was a teenager. I was lucky enough to be able to take riding lessons and I loved being around the horses. I’d spend hours in the barn, brushing the horses and talking to them. Touch is such a powerful and underrated thing, especially for victims of abuse and people with disabilities. Animals are one way for us to find the love and affection we so desperately need in a safe way.

“There’s something so satisfying about having a limp, drooling cat asleep in your lap. It’s such a powerful sign of absolute trust and love.”

Cats have been elemental to me learning about healthy boundaries. They tell you where the line is and enforce it. It’s a beautiful thing. I think animals teach us humility. If we want to communicate, we have to learn their language. Like with Sweetie: I approached him slowly, let him sniff me, and said hello in a cat-friendly way. That’s why it took him all of 30 seconds to decide he wanted me to rub his belly!

I’m glad that people seem to be getting better at accepting the deep bond between people and pets. Some people have more superficial relationships to their pets and that’s fine, but for me it’s always been a deep, mutual friendship. Yes, sometimes Sweetie just wants me to feed him, but he loves me for more than food. There’s something so satisfying about having a limp, drooling cat asleep in your lap. It’s such a powerful sign of absolute trust and love. Maybe I’m like a cat because I don’t trust easily and I can appreciate what a gift that trust is.

“You can’t tell me animals don’t get sarcasm.”

For years my ex felt safe to me because at least he never hurt me sexually. The abuse made me feel unlovable, but my cats have proven to me every day that’s not true. And cats aren’t like dogs; they’re a little more conditional with their love. Even if they love you, they don’t pass out in your lap unless they trust you. To me, love feels like a warm, limp, happy body in my lap and sounds like purrs.

My cat likes to tell me he loves me by acting like I’m the worst cat mom in the world. I think it’s a cat thing. Like when we were driving a thousand miles in the U-Haul and he hated every minute of it. I knew he was okay because of the way he’d glare at me. You can’t tell me animals don’t get sarcasm.

Classic cat.

Yup! Now that I’m older, I get the Crazy Cat Lady label sometimes. But because of my experiences, it’s easier for me to think outside of “normal.” I’ve lived such a difficult, challenging life. I see people my age giving in to societal or family pressure and doing what’s expected of them, whether that means going to college, picking a career, getting married, or having children. My experiences pushing myself to my limit in college showed me that there’s so much more to life than work. I learned early that if you don’t feel good, nothing else matters much.

*Leah is her chosen pseudonym.

Queer Crip Love Fest: The Two Great Loves of My Life

By all accounts, I am one of those people who just needs to get a dog already. I will — will — lavish affection on every dog I encounter, whether or not I’ve met their owner before. I let a stranger’s Pit Bull/Corgi mix sit in my lap and lick my face for a good ten minutes on International Women’s Day. I’m still wondering about whether the stray I saw in my neighborhood months ago found a forever home. Current logistics and finances make pet ownership a no-go, and I refuse to adopt any dog until I know I can give it a life full of cuddling, constant attention, and great snacks. But I’m still a firm believer that there are few loves purer than that between a Dog Person and their canine pal.

So when Kaety, a 20-year-old nonbinary actor, artist, and activist, reached out to me about “the two great loves of [their] life”:

“First is my almost-four-year-old dog, Denim. I’ve had him since he was a puppy, and he had become my therapy dog. Not only does he regularly get me out of panic attacks, he helped me survive during some of my darkest hours. His rambunctious personality keeps me on my toes often, but he wouldn’t be himself without a bit of trouble.

Then there’s my fiancé, Matt. His patience and acceptance of even the most difficult parts of my life had always been absolutely natural. I lived with him through the worst parts of my illness so far, and he has always kept me grounded.”

… I knew we had to talk.

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What does love mean to you?

That’s a really interesting question for me right now because I’ve had some tough family stuff go on. I’ve always had a complicated family; I don’t have many blood relatives I am close to whatsoever. So family love has come from friends as much as relatives. I’ve found that love is someone who is going to be there and understand you, even if they can’t follow everything that’s going on. Even if they don’t get every intricate part of what you’re going through, they’re still there, and they’re still gonna respect you.

A quiet, understated, but always there love makes me feel best. For me, love is positive attention with respect of my boundaries and moods. I love very deeply, and invest a lot in those I love, and sometimes that can hurt, but that’s how my heart is.

Especially since I have a chronic illness, sometimes I can’t be as affectionate with people as I want to be. Often, my skin will just be hypersensitive, and if I even just touch a hard corner of something, it hurts like a burn, almost. That’s hard for a lot of people who care about me. Sometimes I have to place really strict boundaries and be like “I can’t even hug people today, because it hurts.” That has been a problem for some people who have known me for a long time. They’re like “But this isn’t how you used to be.” And I’m like “Well, I have to preserve myself, to some extent.” It does get in the way.

So if you’re having a day where hugging is not an option, what are some other ways that you show affection?

I like being able to touch someone briefly, even if it’s just their arm or their hand. Or just sitting next to someone and actually being there with them — that means so much more to me than any of the physical stuff does, in the long run. If you’re gonna be there and spend time with me, help me distract myself from all the maintenance I have to do on my body, that’s what means the most. Sometimes it does mean just sitting on the couch talking. I can’t always go out to lunches and stuff. I can’t always drive. And so people understanding and still taking the time to be with me during that means a lot.

“Love, for me, is positive attention with respect of my boundaries and moods.”

It sounds like your fiancé does a good job with that.

He was raised by a parent who’s disabled, so his outlook on that is very unique. She home schooled him for a brief amount of time too. He is able-bodied, pretty strong, pretty able to work long hours, which is very helpful for me since I’m not able to stand on a concrete floor for nine hours a day anymore. He, fortunately, also enjoys that, so he’s been able to help us progress. We started out literally living in his parents’ home; that’s where we moved in together. And we gradually got to an apartment, and now we’re in a house, and that’s huge.

Having a safe, stable place to live where I don’t have to go up a flight of stairs or deal with noises from other people that keep me from sleeping has improved my life significantly.

It’s interesting that you bring up the division of labor, because I think a lot of people have questions and/or are skeptical when it comes to a disabled and an able-bodied person together. “What could you possibly be contributing to this relationship?” And not even just from outside — there’s the whole internal “Don’t burden this person who’s already doing all this for you!” thing. This idea that even being with you is a favor.

We haven’t had an issue with that — again, I think that’s largely because he grew up with a disabled person in his household. But he also does understand that having a disability takes work. It is sometimes a full-time job. And he understands that on days when I have energy, I get a lot done! I have pushed through and done things I definitely wasn’t able to do years ago.

How did you meet?

We actually met at community college, in our Community Chorus class.

Oh, yay! That’s so cute!

He was a music major; I was just there because I enjoy music and was like “I should probably try and make friends sometimes.” I got to know him because he was a very popular music student, so the conductor would call him out and have him do example stuff for us. So I knew his voice before I ever knew him. Which, I mean, it’s just so sappy.

Apparently he had tried to talk to me at some event, but it was somewhere that had been hard to drive to and I was a new driver, so I blew him off because I was distracted. But we ended up at an end-of-year party for the chorus and talked then. Our first date was the most recent Godzilla movie, and it was only a few months after that that we moved in together. We got along immediately.

“I was already identifying as nonbinary when we started dating. And on our second date, I came out to him… And he took it fine, which none of my previous partners had. He was just like, ‘Okay.’ And that was huge for me.”

Were you already identifying as disabled when you met him?

No. I was aware that something wasn’t right in my body, but I thought it was due to depression. I’ve always had depressive issues in some form or another. So I definitely wasn’t identifying as disabled, but I was having a large number of the issues I deal with now. It’s obviously super complicated. It was really once I started feeling real physical effects and was unable to do certain things — I ended up dropping out of college, even though I started early, because I was too sick to go to class. It was around then when I was like “This is definitely not normal anymore,” y’know? “This is not a reasonable, expected amount of pain in a lifetime.”

I know that line is so blurry; I also know that my physical and mental health issues interact a lot. Most of the time, I don’t really know where the lines are between those. Which is complicated! It’s hard when an anxiety attack will bring on a fibro flare up. Personally, I think a disability is when it starts keeping you from doing something you want to do. But that’s only based on experiences I’ve had, and it’s obviously super individual.

Especially since I was diagnosed pretty young — a lot of fibromyalgia isn’t caught until you’re closer to your forties — I couldn’t relate to the experiences of other people, who were like “Oh, this was brought on by menopause” or something. I’m like, “I’m 18 and I have this.” There are people who, when I say I have a chronic illness and try to talk about it will be like “Well, you’re just an adult now.” I mean, yes, but also, this is real. It does keep me at home a lot. I do have a weakened immune system. I’m not making this up. So it was so important that he believed me and understood.

I was already identifying as nonbinary when we started dating, though. And on our second date, I came out to him — which was a little scary, because I wasn’t as publicly presenting as I am now. I still looked pretty cis and I was vastly underweight. And he took it fine, which none of my previous partners had. He was just like, “Okay.” And that was huge for me.

“There are people who, when I say I have a chronic illness and try to talk about it, will be like ‘Well, you’re just an adult now.’ I mean, yes, but also, this is real. I’m not making this up.”

That’s so validating. So with the progression of your disability, both physically and in your understanding of it, did he take that well also?

Yes. Right after I moved in with him was when I started hitting my sickest, because I was experiencing a lot of stress and not receiving any real treatment. And I ended up dropping out of school and almost not leaving the house for three or four months. Nothing beyond going to the grocery store, if that. And that was really tough. I had just turned 18, so I was really young. And he took that so well.

He saw every day how sick I was, and how much, every day, I would want to get stuff done. He ended up getting a degree and working full-time, just working on improving skills outside of the college environment. Neither of us is a very traditional learner. But I think his parents being who they are really benefited him, and ultimately ended up working in my favor with him understanding a lot of things right off the bat.

He wants to be a bigger activist in the community. He appears very cishet, and he is cis — but he’s always been attracted to nonbinary people and just not known the term for it. Most of the people he gets along best with are trans or gay. So he’s looking to do a lot more activism. And he’s started wearing nail polish at work. Y’know, he works at Home Depot — he has a lot of conservative coworkers who think it’s okay to say shitty stuff. So he does that just to remind them.

What kind of activism do you do?

Well, I grew up right outside of D.C. — so, that is to say, with too much politics. It’s part of the reason I left. But for years I’ve done activism as just a part of my life. I started helping at polling centers as a child. I’ve been to, I think, all the inaugurations I’ve been alive for except for this most recent one. I’ve been to counter-protests for Westboro Baptist Church, and I was on the steps of the Supreme Court the day before the marriage equality vote. Activism has been a part of my life since I was born, and I can’t just ignore that as an adult.

Recently I’ve been involved with the Degenderettes, which is a queer femme activism group. A lot of activism, art, and community outreach and safety. It’s founded by trans femme people. They definitely deal with a lot of disability conversations as well. I’m the leader of the group up here, and they’ve been great.

Okay, I’ve been saving this: tell me about your dog!

He’s actually here with me right now, being a big sleepy baby. His name’s Denim. I rescued him at around four months, and they told me he was some sort of retriever, but they were very wrong. He’s actually a Catahoula Leopard Dog. It’s the Louisiana state dog, actually. And they’re known for being extremely loyal.

He got attached to me very quickly, so as a puppy anytime he was away from me he’d just destroy stuff. And he wouldn’t sleep at night. But now he’s about four years old and has been one of the best companions for me. He’s not as energetic as he used to be, but he’s such a troublemaker and the most loyal dog I’ve ever met. He’s next to me at all times he can be. He knows when I have panic attacks or when other people have panic attacks, and usually he’ll either try and crawl in your lap or start acting out and causing trouble. I know that as a cue now: if I’m showing anxiety that I might not even notice and he’s acting out, I need to evaluate how I’m feeling. He’s never been trained for it or anything; he just does it.

Right now he’s certified as a psychiatric comfort dog. I’m going to work on getting him certified as a higher-level care dog, so I can bring him to events and stuff. Because he’s amazing with people. I can take him on planes, but it’s not as easy as if I had the other certificate. Plus I want to take him to Pride and stuff like that.

“My dog knows when I have panic attacks or when other people have panic attacks, and usually he’ll either try and crawl in your lap or start acting out and causing trouble. I know that as a cue now. He’s never been trained for it or anything; he just does it.”

How has Denim helped you navigate your disability better?

He definitely knows when I’m having anxiety and over-obsessive tendencies. He can tell when I’m starting to mentally lock up, and has gotten very good at telling me that I’m doing that. He’s basically a nurse dog: he lays next to me when I’m sick and is very calm. He doesn’t get into as much trouble then. He gets me out and about, gets me to talk to people. I’ve met people who don’t like dogs who like him.

In general, it’s just the companionship. When I got him, I was alone a lot and lived in an area where I couldn’t walk to restaurants or anything. So he has been a live-in companion. And he’s got such a big personality.

You mentioned earlier not being able to show physical affection all the time, and sometimes dogs can want to jump on you just because. Has that ever become an issue?

Once in a while. He does have long nails, and since I bruise easily, I’ll just get a lot of bruises that are lines up and down. Now that we’re in a house, we spent some extra money and fenced in the yard, so that’s been good in terms of running around. We open the door and he just sprints. He’s learned to be a dog without other dogs.

He’s been such a companion, and a real lap dog since the day I met him. I sat on the ground, he came over and sat in my lap, and I was like “I guess this is my dog now.” Also, I got him right after I was diagnosed as bipolar. And so he was there all through that.

Did you face similar issues of being believed and taken seriously — which it sounds like was an issue with your fibro — with your bipolar diagnosis?

To an extreme extent, yes. I was pretty lucky to get diagnosed early at 16. But I faced some pushback from my therapist at the time. And I would have friends’ parents tell me they didn’t believe in me taking meds. I would tell them “I probably would be dead without these,” and they’re still like “You’re too young for that.”

I get that we don’t want to start “too early,” but sometimes it is necessary. And that needs to be understood. It was bizarre — and because I was still considered a child, people would feel comfortable saying things like that to my face. But even at that age, I wasn’t having it. And because my mom started taking medication for depression when I was young, she understood that they have life-saving properties. That was lucky.

I was very fortunate to hear about fibromyalgia and get my diagnosis as early as I did. Both of my parents believed me, which was convenient, and I already knew what to do. So I was really well prepared, and I’ve helped a lot of other friends with chronic pain start to address and understand that, as a young person, you shouldn’t have constant pain. That’s not addressed enough! And it’s definitely a thing. So I do that in the community a bunch and I want to do more.

It’s such a complicated thing because there isn’t really one answer — as with many chronic illnesses. There’s never just one answer.

Queer Crip Love Fest: Bring Love Back to Academia

I literally did the homework on being gay in high school. My final presentation in U.S. History was an hour-long recounting of the gay rights movement, unleashed upon conservative suburban classmates who wriggled uncomfortably in their chairs all period. I gave the same talk the next year as Gay Straight Alliance president, and in the meantime read everything I could get my 17-year-old hands on about the vast and growing progress that ultimately enabled me to come out so young.

But in wringing every last drop of gay pride out of my academic experience, I erased disability from it altogether. I bought into the “my mind is fine” model hook, line, and sinker and reaped my rewards. The good grades piled up and reassured me that I was not only equal to nondisabled people — but just like them after all. So imagine my surprise when academia ended up putting the first cracks in that veneer. In researching my undergrad thesis, I came across a little thing called disability studies, and the work that changed everything for me wasn’t a memoir or a TED Talk, but an academic article.

Of course, the school system hasn’t exactly been kind to disabled folks. Disability rights pioneer Judy Heumann was once sent home from elementary school as a “fire hazard.” Just last week, 12-year-old Ehlena Fry had to go all the way to the Supreme Court for the right to bring her service dog to class (and got a rare unanimous victory, thank you very much). Right now that same court is preparing to decide just what a “free and appropriate public education” means under the Individuals with Disabilities Education Act. And of course we’ve got Betsy DeVos, who didn’t even know IDEA was a federal law until her confirmation hearings.

School worked for me, at least in part, because I already fit its preferred bill: white, upper middle class, ambulatory, verbal, “gifted.” For too many disabled students, education means encountering discrimination and underfunding in the very same classrooms that are supposed to empower us, out of the mouths of supposed advocates. That’s why I was excited to talk to Lisa, a 28-year-old “grad student, occasional writer, seamstress, reader, cat mother, and queer babe” who’s studying mental illness in 19th century female writers, and has a lot to say about academia.

Here’s how she introduced me to her PhD cohort:

“They’re gems of people, full of vitality and intelligence and fearlessness. They’ve supported me through difficulties (like the resurgence of PTSD symptoms that occurred around the time of my move to my city) and celebrated with me through successes (my first presentation, my first accepted conference proposal). We’ve challenged each other in class, laughed together (and in costume!) on Halloween, shared meals and cigarettes and the occasional misery. I truly love them, and I feel loved by them.”

Read on for more academic love, the fight for accommodation, and mental illness’ place in the disability community.

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First off, your research sounds fascinating. What can you tell me about it?

Well, I’m a first year PhD student, so it’s a general idea at the moment. But what I hope to do is read mental illness in 19th century literature by women through a disability studies lens —  not as purely metaphorical, but as a real representation of disability.

Do people tend to lean on the metaphor in your field?

Well, the seminal text in English literature is Gilbert and Gubar’s The Madwoman in the Attic. One way to characterize their argument is that the madwoman appears in 19th century literature as a sort of proxy of the author; she does what the author cannot, because she is so confined by social mores. I want to push back against that. First of all, reading illness as metaphor erases the reality of disability in the world. Secondly, metaphorizing illness becomes a problem for treatment. Plus mental illness is rarely, if ever, liberating.

All excellent points! It’s always struck me as kind of a cop out, people painting over the realities of disability and mental illness that they’d rather not deal with. Much easier to either demonize us or reduce us to symbols.

Right! All disabilities tend to get used that way.

“Reading illness as metaphor erases the reality of disability in the world. Metaphorizing illness becomes a problem for treatment. Plus mental illness is rarely, if ever, liberating.”

What does “the reality of disability in the world” feel like for you?

I am disabled by major depressive disorder and post-traumatic stress disorder. My reality is the constant negotiation of symptoms, adjustment of medications, dealing with side effects, dealing with stigma. It’s a heavy weight sometimes. I have a lot of support right now, though, so things are going pretty well for me. Even so, it’s a lot to bear. I don’t like to complain, but I suspect ableism has a lot to do with my reticence to be honest about the difficulties of living with a disability. So I’m not going to take it back!

How have people responded when you bring up those tougher realities?

It depends on the person. Generally, I surround myself with people who are kind and generous. I do find myself apologizing to my therapist a lot, though. She wants me to stop doing that.

Mine too, I’m with you there.

Negotiating symptoms takes a lot of time and energy. I take three medications that help, but even so, I fell into a depression over the winter break. My therapist said it was kind of like a mild dissociation; I just kind of checked out for weeks. I have to try to stay as on top of warning signs as I can, but even then, things slip through the cracks. I see a therapist and a psychiatrist, and I go to group therapy as well. I have a lot of nightmares because of the PTSD. Because of my medications, I sleep a lot. I could go on and on about symptoms, but there’s a taste for you.

“Why is the onus on us to measure every person’s empathy stores and judge whether or not they’ll treat us with kindness?”

I’m lucky that I’m in a place where most of the people are very supportive. That doesn’t mean I haven’t internalized a whole lot from outside my social circle, though. Negotiating with ableism is an ongoing conversation in my head. Part of that is deciding where, when, and what to disclose about my illnesses. I usually have no problem saying what I have, but more sensitive stuff like my hospitalizations takes a lot more thought. All of it takes up a lot of time and headspace.

Oh, absolutely. It’s a ton of work gauging how much people are going to be able to handle, and can get frustrating when they won’t take some responsibility for that work themselves.

Right? Like, why is the onus on us to measure every person’s empathy stores and judge whether or not they’ll treat us with kindness?

So with all that negotiation going on in the background, what does love mean to you?

As a bisexual woman with severe mental illness, love feels like an extended hand. Sometimes that hand is a high five, sometimes it’s a hand to hold, and sometimes it pulls me up when I’ve fallen hard on the ground. Love doesn’t flee from me when I’m doing poorly. Love stays, and it flows out of actions. It’s a resource that is constantly in flux between people, animals, things. I’m not sure why I called it a resource — maybe because it’s so necessary. I know that, for me, it’s something I need to both give and seek out in order to be well.

I haven’t had much luck romantically. My one relationship (a marriage) was a disaster that left me with PTSD, a cherry on top of my severe depression. I haven’t lacked in love, though. My most recent love story is that of my cohort. I love the way they accept me, even when I reveal things like my stays in psych wards or my divorce or even my bisexuality. Our relationships with each other have only deepened over time. I knew this transition to a new city, a new job, a new social scene, was going to be difficult. I mean, I’ve had two failed transitions before. So this time, I was determined to seek out people who I could love, and who could love me. I found that in them.

I love that they’re the ones you want to talk about! Most people don’t think of love extending into those kinds of spaces, especially academic ones that can be so competitive.

They are amazing! Yeah, “cohort” is such a cold word, but it feels so warm to me because of my experience with them. They’re understanding, but they also have shown me such an openness. They not only want to share their ideas, they want to share their lives. I remember once I was feeling so low, and one of them dropped everything to come over and eat ice cream with me. Recently I went to one of their houses and made his baby smile. I haven’t perceived a lot of competition among us, which is great. I learn so much from them in classes, too. It’s a combination of an intellectual and a personal relationship that only deepens because one informs the other.

“I think intellectual work needs to come with a commitment to caring for one another. That’s the environment where creativity and thought can really bloom.”

That sounds ideal, especially when you’re doing something so vulnerable together. Creating any kind of work takes a lot of trust.

Absolutely! Let’s bring love back to academia; or maybe let’s bring it in for the first time.

Yes! What would that look like?

I’m fortunate to have some professors who model it. It’s like you said, trust is a major part — and how can you trust without some element of love? I think it comes down to care. I think intellectual work needs to come with a commitment to caring for one another. That’s the environment where creativity and thought can really bloom.

Do you find that ableism crops up often in academic environments? I think that’s something that gets talked about more with younger students, but I’m curious about your experience in higher ed.

I think it does, in subtler ways. The fact that disability studies gets written off by more conservative academics is proof of that. I’ve only had one quarter’s experience in grad school, but I do find strange things, mostly to do with ignorance. People will ask strange questions that are based on ableist assumptions. I’m about to cut back on medication under the care of my doctor, which will probably result in stronger or more symptoms. I’m afraid of what will happen if I need to slow down. At a previous master’s program (for education), they were unwilling to make accommodations for me. I’m going to try to be like one of my heroes, Harriet McBryde Johnson, and fight to be accommodated.

“Why is a hug or a kiss seen as so much more loving than spending the time to give comments on a paper full of cherished ideas? Than sharing a drink to celebrate a quarter’s hard work? Than creating something together?”

Ultimately I believe it is worth fighting for accommodation, and those entering academia must know that it will be a fight. I’m in the process of reflecting on whether or not I want to fight throughout my entire career — and really, my career path is at stake. For those of us with severe mental illness, fighting for accommodation will always be a part of our lives. I do believe there are career paths that are more accommodating than academia. It’s a personal choice as to whether or not the fight is worth it in the end.

Harriet McBryde Johnson was a badass and a treasure, so excellent choice. Are most of the people in your cohort nondisabled, are there other disabled folks, or is it a mix?

I’m not aware of any disabilities in the members of my cohort. There are some disabled people in the department, though. Not many.

Sounds familiar.

Right?

“Ultimately I believe it is worth fighting for accommodation, and those entering academia must know that it will be a fight.”

Have the able people in your cohort been more understanding than those you’ve encountered elsewhere?

Yes, the people in my cohort are definitely more understanding than people at large. I think it’s a combination of luck of the draw and of intellectual curiosity. Their openness to learning about various ways of being makes all the difference. Even if they haven’t had personal experience with severe mental illness, they’re willing to put forth the energy to empathize with me. In the same way, they’re willing to listen to me talk about disability and to ask questions and really listen. Such jewels.

What makes you say that there’s love between all of you instead of just, say, creative or intellectual support?

I’d like to expand the definition of love to include things like creative or intellectual support. I think I originally said “love” because we have a personal relationship that extends beyond intellectual spaces, but it occurs to me now that our love for each other is in the supportive actions that we do for one another. Why is a hug or a kiss seen as so much more loving than spending the time to give comments on a paper full of cherished ideas? Than sharing a drink to celebrate a quarter’s hard work? Than creating something together? I suspect it’s because heterosexual romantic love is privileged above all other forms, no matter how life-giving they are.

“Mental illness doesn’t get much room in disabled spaces, probably because there’s this myth that mental illness isn’t real. I think we all need to work to change that.”

It can be hard for me to accept the fact that I’m lovable. My mental illnesses affect the way I feel about myself. As a result, I’ve had to consciously work on loving myself the way I love others. Developing coping skills to help me accept the love I’m given has helped me to appreciate that love more deeply. Also, working through my PTSD with my therapist and group has given me a chance to develop conscious awareness of the ways that I’m still reacting to my trauma, and thus to deepen my relationships across the board. Overall, I feel acutely aware of love’s power because of my illnesses. I appreciate that.

Last thing: I’m curious how you came to identify as disabled and with that community. Many folks both in and outside of those circles are quick to dismiss mental illness as a membership card, so to speak, and I think that reveals a lot about how ableism grows, even in our communal spaces.

When I was younger, maybe eight or nine years ago, I identified as disabled for a period of time because of a long-term physical illness. That’s when I first came into contact with the disability rights movement. I read all that I could about it, because it was so affirming to finally hear about the okay-ness of all bodies. Even though I have dealt with MDD since I was fourteen, I didn’t really identify as disabled in that sense until I read Too Late to Die Young, again by Harriet McBride Johnson, last year. Before that, I bought the ableist narrative that my illness was a personal problem rather than a social one. In one of her stories, she talks about a disability rights group she was a part of that had a man in it who identified as “crazy” and had experienced multiple hospitalizations. It was like I was knocked upside the head. I was like, “Ah! It’s me!” That’s when I started up my reading again.

It’s definitely been my experience that mental illness doesn’t get much room in disabled spaces, probably because there’s this myth that mental illness isn’t real. I think we all need to work to change that.

Queer Crip Love Fest: Radically Vulnerable Feminist Pep Talk

All photos courtesy of Alaina Leary 

Happy Aggressively Affectionate Week, everyone! Did you do Valentine’s Day? Galentine’s Day? Gal Palentine’s Day? My girlfriend and I celebrated early with a fancy dinner on Sunday night followed by a few solid hours of video games. I’ll take Dragon Age over crowded restaurants every time. But I’m also a big ol’ squishy romantic at heart — and so I’m excited to introduce this week’s Queer Crip Love Fest guest.

Alaina is a 24-year-old grad student living in Boston and working in book publishing for kids and young adults. She’s not a fan of Donald Trump, Bury Your Gays, Autism Speaks, or the lack of diverse representation in books. But she loves her girlfriend Macey, whom she described like so:

“I love that she’s selfless and the way she cares about people. I can see it in her eyes when she’s thinking up a great present for someone, I can hear it in her voice when she calls someone to make them feel better. We can be stuck together in the most awful situation, like we’ll be in an airport waiting hours for a delayed flight, but it doesn’t matter because we’re together, we make it fun. She’s the kind of person you want to be stuck in an airport with. She’s the kind of person who, when she comes into the room, it’s a better room than it was before.”

They’re high school sweethearts. They met in Agricultural Mechanics class. On the first day. Keep reading, y’all — this one is a goodie.

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Okay, first I want to talk a little about you because I’ve admired your work for so long. Can you tell me about your grad program?

I’m studying for my Master of Arts in Publishing and Writing. I started in September 2015, right after undergrad, and I will graduate in May of this year. Most of my focus has been in online and book publishing. I’ve taken a lot of classes in electronic publishing, editing and writing, business and innovation, book publicity, stuff like that. Right now I’m in a class where we’re writing stories for the Boston Globe Magazine. We’re going to pitch those stories to them and be accepting assignments from them on the local community — so I’m hoping to sneak some marginalized stories in there if I can.

Yes, that’s great! You’ve also worked with Disability in Kidlit in the past, right? I know they’re going on a break, but they’re such an awesome resource that I’d love to hear more about that.

Yes! I have written for them before. I’m not one of the founders — though I wish I were, because what a great idea — but I’ve written some reviews for them and am friends with the people who started it. Disability in Kidlit is an important site because it, to my knowledge, is the only one that focuses on disability representation in children’s, middle grade, and young adult lit. Possibly even in any lit!

I’ve been working with the nonprofit We Need Diverse Books for a while now, and a lot of what I’ve done with them is dependent on Disability in Kidlit, Latinxs in Kidlit, and Gay YA. All these sites are feeding into these groups of marginalized people whose stories aren’t being represented. Book reviewers aren’t necessarily vetting these books for whether or not they’re good representation, and that’s what sites like Disability in Kidlit do.

What have you been doing for We Need Diverse Books?

I’ve mostly done social media for them since last year. I went to BookCon back in June 2016 and livetweeted their young adult panel, which had some great authors like Leigh Bardugo, Gene Luen Yang, Sherman Alexie, Anna-Marie McLemore. It was focused on loss and grief — it wasn’t actually focused on diversity — but they were very careful in vetting diverse authors of diverse books. It had a really good spin on that whole topic.

I’ve also hosted and moderated a lot of We Need Diverse Books’ Twitter chats — picking people and themes for those, asking questions, getting the audience involved. Every once and a while there will be a really disability- or queer-specific question, and they’re like “We have someone who can answer that!”

That’s as good a segue as any to talk about your girlfriend, Macey. You’ve been together for a long time!

Yeah! We just made it to eight years.

That’s fantastic, congratulations. You met in high school?

Yeah, first day.

Oh my god. Okay, can you tell me your origin story?

So our story actually starts with the first class we were in. We went to a vocational high school where, instead of being a technical school where you’d learn hairdressing or graphic design or something, you learn about animal science. So we actually met in an Agricultural Mechanics class — which, like, I still don’t know how to do anything besides turn my car on. But we met on the first day of school, and she asked to eat lunch with me and some girls, and I just kind of liked her immediately, if you can believe that.

“ I was not completely out as being queer — I was semi, half-in-half-out — and she wasn’t out at all. So we started out as friends… I said ‘Why don’t we give it a go?’ And she said ‘I’d love to.'”

I was drawn to her for some reason. She was reading; that might have been it. She had glasses; that could have been it, too.

Speaking from experience, both of those things help!

Right. At the time, I was not completely out as being queer — I was semi, half-in-half-out — and she wasn’t out at all. So we started out as friends, and we were friends for about a year when I realized that our friendship was developing into a pretty serious crush. And then I was like “Oh no, straight girl, friend, me — a typical scenario.”

Eventually, it just kind of came out among our friend group that I liked her, and she said “Y’know what, I’ve been feeling the same kind of thing.” And I said “Why don’t we give it a go?” And she said “I’d love to.”

That’s so nice!

We were kind of shy and nerdy in high school, so I think I asked her out over AIM.

Classic.

Yup! And her response was via handwritten note, so I still have that.

Aw, that’s so sweet! What a nice memento.

That’s pretty much our story — and right after we started dating, it then became “How do you date your best friend? What do we do if we break up? Is she bi? Is she gay? Is she just gay for me?” So many questions for both of us. And the whole coming out process to all our friends and to her family and most of mine, we navigated together. Which is just wild to me, looking back on it.

How has that been? Have you generally had good experiences through all that?

Yeah! I mean, there’ve been some rough patches, like every coming out situation. We have had a lot of really good experiences, though. Our friend group in high school was very accepting. And my family was very accepting. We’ve hit a couple of rough patches with people not believing in bisexuality, because a lot of people are like “Oh, you can be gay or you can be straight, but you can’t be bisexual,” which is what we both actually are. But we’ve chosen to not really push that issue with most people, because we’re dating each other — so I guess if they don’t believe us, that’s fine. It doesn’t really affect our situation.

“Right after we started dating, it then became ‘How do you date your best friend? What do we do if we break up? Is she bi? Is she gay? Is she just gay for me?’ So many questions for both of us.”

We pretty much went through the whole experience together. I knew I was queer a lot earlier than she did, so I came out a lot more easily and a lot younger to my family. So I was being a support system for her, which was new to me: learning how to be patient with someone as they identify with themselves and as they chose to tell people, and dealing with the fallout of what it’s like to tell someone. Even someone who ends up being accepting, it can be a shock.

Absolutely. I came out really young also, so I’ve had what I would imagine is a similar experience. Being out in high school is a very specific type of being gay or queer. And even if you ultimately don’t lose any friends or whatever, it can still be kind of a rocky road. It’s nice that you had someone there to go through it with you, but I can see how it’d be kind of strange to experience both sides of that negotiation at the same time.

It was. And I think, for me, what was so weird about it was that I had always been culturally taught that you just know you’re gay the minute you come out of the womb, basically. And I did! I don’t remember not being gay. But my girlfriend had a different experience — she really just didn’t identify as gay or straight, and all of a sudden she was like, “Yeah, I guess I like everyone.” For me that was weird at first, because I had never experienced that before. And I was like “If you don’t know, are you really even gay?” Because I had always heard that you were born that way and you just know that you are.

Have you since shifted your views on that, as a result of being together?

I’ve definitely shifted my views. And I had an aunt come out as trans and transition in the last couple of years — so I’ve kind of learned that either people don’t know everything, or they don’t want to deal with it, or they sort of know somewhere inside but they’re not ready to accept it yet. And I think, no matter what part of the LGBTQ spectrum — or even disability, y’know — you’re on, that’s completely valid. I got older and realized that there were parts of myself I hadn’t been honest about. I started to realize more why that was so common for people in the LGBTQ community.

“I just had this feeling inside me that disability wasn’t an identity or something to be proud of or tell people about. It was hush-hush: you don’t want your employers to find out, you don’t want your friends to find out.”

Was disability one of those things you weren’t being a hundred percent honest with yourself about?

Absolutely, yeah. The way I would put it is that my internalized ableism ran deeper than my internalized queerphobia. And I’m not sure why that is, to be honest, because I was actually raised by two disabled parents. But I just had this feeling inside me that disability wasn’t an identity or something to be proud of or tell people about. It was hush-hush: you don’t want your employers to find out, you don’t want your friends to find out. You try to be as well as you can, suck it up as much as you can, and not ask for accommodations until the last possible minute. It took a lot of unlearning and a lot of social justice for me to get to a point where I’m like “Y’know what, no. I’m just gonna say it.”

I think that’s true for a lot of people in our age bracket who’ve come to disability activism as young adults. It’s in spite of ourselves, regardless of how progressive our families were. I was born two years before the ADA passed, so I wasn’t aware of it, because I was two — but you can bet my parents were. They had done their homework. But they didn’t know how to keep internalized ableism from becoming a thing in my life. They were nothing but supportive of me, but it still gets in there. How has unlearning that habit played itself out in your relationship?

I want to back up and bring my good friend Katie into this, actually, because she deserves some credit. Not to always blame your moment of truth on some disabled person — because that’s such a typical story — but it wasn’t really until I was in college and met Katie, who uses a wheelchair, that the process started. I didn’t even know what ableism was, if you can believe it. I kind of came to that unlearning as if I were an ally — which I think is very common for people in the queer community too. At first you’re like “I just really like gay people! I really support them!” And then all of a sudden you’re making out with them. That’s kind of how I came to disability too. I was like “Oh, I’m really just here to support,” and then I’d find myself getting fired up about these topics, and them feeling very personal. Katie would say something about accessibility or the questions people asked her, and I’d be like “Yeah! That does suck! … Why does that feel like it’s happened to me before?”

“I kind of came to that unlearning as if I were an ally — which I think is very common for people in the queer community too. At first you’re like ‘I just really like gay people! I really support them!’ And then all of a sudden you’re making out with them. That’s kind of how I came to disability too.”

Right! So were you not identifying as disabled at that age?

I wasn’t, no! I didn’t really start until undergrad, honestly.

So you met Katie and saw some similarities in your experiences, and then that was it? Or was it sort of on its way to happening anyway?

I would say college and the internet in tandem opened me up to the wider disability community. My parents, like I sad, were/are disabled, but other than that I really didn’t know anyone else. In college I sort of just fell into this really disabled friend group, which was awesome. We had more disabled people in our group than abled people. We just kind of flocked together. In tandem with my social justice activism and learning on the internet, I was meeting all these people in real life who were like “Y’know, I have autism,” or “I have cerebral palsy,” or “I have dyslexia,” and these were things they were cool with talking about. They were fine with asking for accommodations. And I think it just opened my eyes to the fact that it didn’t have to be this hidden part of me — this very special ed, going to the doctor’s office kind of thing.

So you and Macey were already together when you started to discover disability politics?

Yes.

And is she disabled also?

No.

So were you her first exposure to those sorts of ideas? When you started to get on board, so did she? Or did she already have experience with it in the past?

She definitely did not have experience. I would say she learned about it at the same time that I did, through Katie as well. And then she started to see me opening up to it, and as our friend group grew and became more vocal about their own disability experiences, so did I, and that was a big moment of change for both of us.

“I think it just opened my eyes to the fact that it didn’t have to be this hidden part of me — this very special ed, going to the doctor’s office kind of thing.”

One of the biggest things we’ve had to talk about as I’ve gotten more into disability politics is, I’ll be honest: like everyone else, disabled or not, I’m lazy sometimes. What we needed to establish in order for that to work was “Do you actually need an accommodation or assistance right now, or are you just being lazy?” Because you never want your partner to be the person who does everything for you or feels burdened by you, or feels like they have to help you with all these things you can’t help with around the house. And she’s just been really respectful in terms of when I can’t do things, and being accommodating.

I have intersecting disabilities, so in addition to physical difficulties I also have attention deficit difficulties. So sometimes it’s just a matter of me explaining “I put the laundry in, but I forgot to put it in the dryer!” “I made a ham sandwich and forgot about it!”

It’s really important that you bring up the word “respect,” because I think that’s the thing a lot of disabled people want in our lives in general — but especially from our intimate relationships. Can you think of a particular time that really showed she understood your access needs?

I feel like it happens on such a daily basis. We’ll be going to the grocery store, and she’ll ask me if I need my cane or not because it’s already in the passenger seat with her. We live in an apartment and we have dumpsters where we throw our trash out, so if I can’t lift it and throw it in, she’ll lift it and throw it in for me. She’s really good about all the sensory issues that I have — so sometimes I’ll need captions, or I’ll need something repeated, or I will completely forget what someone looks like, or be somewhere that’s just sensory crazy and need to get out. She’s awesome about that stuff. She’ll be like “We’ll get you out of there, we’ll get you somewhere chill, I’ll rub your back.”

Sometimes that’s all you need: just someone to be cool with accommodating whatever’s going on. And I think one of the reasons she’s so good about that is because she knows what it’s like to deal with her own struggles, because she is also a marginalized person. She’s queer, obviously, but she’s also Latinx and she’s plus size.

We talk a lot about our intersecting marginalizations and how our experiences are similar and different. Because we have those purposeful, feminist discussions with each other, we both really get that sometimes we just need different things, and one person just needs to be able to say “No, right now, I need this.”

“You never want your partner to be the person who does everything for you or feels burdened by you, or feels like they have to help you with all these things you can’t help with around the house. And she’s just been really respectful in terms of when I can’t do things, and being accommodating.”

So what does love mean to you?

I think about this question a lot, because I have been in a relationship for so long, and so many of my friends and family members have noticed that it’s noteworthy that I’m still dating my high school sweetheart. Love, to me, really means unconditional love. I think love starts from a place of excitement and passion, and mutual interest in each other that you really get excited about together. And then it grows into something so unconditional. Anyone who’s been in a long relationship can tell you that there are very difficult times and very stressful times, and there are times that you’ll be tired and they’ll be cranky, or you’re both tired and cranky — and it’s the unconditional love and respect for the person, and remembering to always be better, that gets you through those times.

“Sometimes that’s all you need: just someone to be cool with accommodating whatever’s going on. And I think one of the reasons she’s so good about that is because she knows what it’s like to deal with her own struggles, because she is also a marginalized person.”

I think someone that you really love makes you want to be better, but you also want to be better for them. It’s so easy to fall into the old traps of like, whining and complaining, or nagging, or snapping at someone when you’ve had a bad day. And I think if you really, unconditionally love someone, you take a minute and you step back and say “Stop it, self. You’re just being an asshole. This person’s done nothing but love you, and you should treat them with respect.”

Apologies go a long way, and I’ve always been taught to own up to what you do, apologize, and have that discussion — and then actually take some action and be better. A lot of what love means to me is that commitment to grow, and recognizing that someone will change. Because if you meet someone at 15 and you start dating and now you’re 24, that’s a lot of years and a lot of change. You’re changing as a person as you grow older. And I think what sustains love is you recognize the person is going to change, and that you’re going to change, and that you’re committed to making that work.

Seems to have worked, apparently!

I’ve just kind of rolled with it. Macey and I have changed so much. And like you said, I got into disability politics while we were together. I came out to the world as disabled, I started walking with a cane, I started writing public articles about disability and autism and all of these things, and being so public about that. That’s definitely a huge shift of identity for both of us, because she’s a part of my life in this relationship. Those kinds of changes are things people go through together and you just have to be ready to roll with it.

“We talk a lot about our intersecting marginalizations and how our experiences are similar and different. Because we have those purposeful, feminist discussions with each other, we both really get that sometimes we just need different things.”

You also identify as nonbinary, right?

Yes.

Did you come out as nonbinary while in your current relationship?

I did. It’s funny that you ask that, because I have a very long and bizarre relationship with gender identity that’s still in the works. I originally came out as trans to Macey while we were still in high school, and at the time, I wasn’t really sure what I wanted to do with that. Maybe socially transition and medically transition, maybe change my pronouns. I experimented with the pixie cut and kind of gender-neutral, masculine look. That was pretty early in our relationship, now that we’ve been together for eight years. Because we started dating when we were sophomores, and it was senior year that I told her I wasn’t sure how I was feeling about my gender identity.

I thought she wouldn’t want to be with me, even though she was bisexual. That should be a fail safe. But I still imagined that it would be too difficult. I guess that was one of the moments early in our relationship when I was like “She’s in this for the long haul, and she’s okay with change and the unknown.” That’s really the reassurance I think I needed to move forward with our relationship — and to feel completely, radically vulnerable with another person. Ever since then I’ve been able to be so much more honest with her, because that was when I told someone something I’d been thinking about since I was little but never shared with anyone.

I love that, “radically vulnerable.” I think vulnerability is tough for disabled people, because you’re sort of assumed to be perpetually vulnerable but also constantly fighting against that. So it’s great that your relationship is a place you feel like you can go to let down the guard.

Right. It’s one of those things that I’m going to be constantly working on, because I think we all are born radically vulnerable as kids, and we’re all so very open to the idea of just being whoever we are when we’re young. And for many of us, our first experiences with doing that are being shut down — whether it’s by our parents or educators, classmates, other family members. Being shut down for being who you are and living your life.

In my case, I was disabled as a child as well, so living your life in a disabled way, being shut down and being told that the way that you speak or walk is not correct and not good. I think that it turns people away from radical vulnerability, and we have to kind of relearn how to do that when we’re in these relationships. Because it really is the only way to get to know someone and feel safe with them: to know that they know you at your core, and that at your most vulnerable, they’ll still be there. I think if you haven’t reached that point yet, there’s still that part of you that says “Well, when they see this, they won’t wanna.”

“I think what sustains love is you recognize the person is going to change, and that you’re going to change, and that you’re committed to making that work.”

I think that’s a really common fear, but for disabled folks it’s especially acute. Because there’s this narrative that you’ll always be too much, or that there’s gonna come this breaking point just by nature of who you are. Especially if your partner’s not also disabled. But if they are also disabled, everyone simultaneously assumes that’s who you should be with, and also doesn’t understand how you could be in that relationship at all! So it’s sort of a lose-lose.

I also have an able-bodied girlfriend, and it’s interesting the expectations that people have for a mixed-ability relationship. That person being not just your de facto caregiver, but ultimately your savior. And your job is to make them a better person. What would you say to somebody who was implying your relationship should be like that?

This definitely has happened before. People see Macey holding doors open for me while I’m walking with a cane, or holding my coffee for me, or throwing the trash out, and they make these assumptions. What I would say is that I don’t think disability is the only thing in life that makes our experiences different — and no matter whether you’re a mixed-ability couple or you have disabled partners or able partners, there are different things all parties bring to the table. Even in a couple where both people are abled, there are going to be situations where either person acts as more of a caregiver or nurturer. It’s just natural to being human.

Being disabled doesn’t make me the person who needs to be taken care of all the time. In fact, there are plenty of times when my girlfriend really needs a pick-me-up — and I’m the one who snaps her out of it with a good ol’ feminist pep talk. Everybody needs that sometimes.

Queer Crip Love Fest: I Wanted This Country to Be Better

Feature image via Los Angeles Times

Last time on Queer Crip Love Fest, we sat at the threshold of Donald Trump’s presidency and fortified ourselves with a radical love story (and a GIF for the ages). Now we’ve got executive orders, judicial stays, and confirmation that boy oh boy, is Trump delivering on those campaign promises. It makes my head spin to think that by the time this article goes live, we’ll have a whole new deluge of Bannon Brand All-American Bigotry^TM to sort through. There hasn’t been a single day’s reprieve, and make no mistake — that barrage is strategic and absolutely intentional.

So maybe you protested at the airport over the weekend. Maybe you leveraged your voice, your time, your money, or your law degree to fight back. But especially with So Much Bad coming down the pike, it can feel too easy to either insulate yourself or give in to the overwhelm. Here’s a reminder of why to do neither.

Emily* is a Syrian-American college student who had this to say about love:

“I love my family so much. They have been there for me my entire life, through sickness and health (mostly sickness, but who’s counting). I come from a huge Syrian-American family, and we do everything together. I’m mostly talking about my cousins who are some of the best friends I will ever have. We grew up together, supported each other, and caused chaos together from the day we were born.”

Read on for more family history, finding community with an invisible disability, and what Trump really means by “terror countries.”

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What does love mean to you?

I think love really means compassion: the ability to listen and accept people at face value. It’s very malleable, and it’s also a support system. When you’re at your worst and when you’re at your best, somebody who can be there through all of those times. And it can be multiple people! Platonic, romantic, whatever. But I think having people to be by your side, and you be by theirs — that’s the biggest show of love.

I never really connected with romance movies or novels and all that. Because it never felt like that was gonna be me. So I think understanding that romance and love can look different for everybody is really nice. It’s comforting having people you know support you no matter what and who will push your buttons, but also be able to sit and cry with you or laugh with you, or make food together. I think it’s someone who can be there for both the boring stuff and the fun, adventurous, showy things.

Thank you for pointing out that it’s not just about romance or sex. Because especially when we’re talking about disabled folks, getting an able person to want you is seen as your punch card to real adulthood. And there’s so much more to love than that!

I’m not a caricature in your little storybook to check off, you know? I think being able to redefine things in my own way and finding new people to understand that is really helpful.

I love my family so much. They have been there for me my entire life, through sickness and health (mostly sickness, but who’s counting). I come from a huge Syrian-American family, and we do everything together.  I’m mostly talking about my cousins who are some of the best friends I will ever have. We grew up together, supported each other, and caused chaos together from the day we were born.

That sounds amazing. Tell me about them!

So I grew up in a Midwestern suburb, about 15 minutes outside the city. I saw my cousins three or four times a week, maybe more. We hung out after school, my aunts would take care of us sometimes, my mom would take care of a bunch of us. We all kind of shared that whole child-raising thing, which was really handy, and also super different from anybody I knew. And we would always do dinner together and make these big Arabic meals, all just crammed into one house using the top floor, the basement, the garage, the patio — any open space. It was a really fun way to grow up, because I was never alone.

“I never really connected with romance movies or novels and all that. Because it never felt like that was gonna be me. So I think understanding that romance and love can look different for everybody is really nice.”

I grew up with my cousins being my best friends, my support system. We’re all very close in age so we reached all the milestones together. And now we’re at colleges across the country, and it’s super weird. But we’re still always talking and very connected — which I didn’t know would happen when we went to college. I’ve always just grown up in a very tight-knit community.

Was there an Arab community where you grew up, outside of your family?

Yeah. My family’s from Syria, and we came to this country in around the 1940s. I’m second-generation, and my Gidu, my grandpa, came here when he was about thirteen. So I kind of have a third-generation experience because he basically grew up in this country. He spoke very good English because for a while, before there started being more militarized groups in Syria and before the war now, a lot of schools did have English classes. Plus he was raised by an uncle, so he never really had to be alone in the country.

At the same time that my Gidu came over, there were a bunch of Syrian and Lebanese people who came too. Everybody settled in this one neighborhood, in the same three or four blocks. It was just Arabs all over the place. And they transferred that little community when everybody spread out into their own areas. It was still like, you went over and you mowed the lawn for your aunt, or you raked the leaves for this person. You still did everything for everybody even though you had to drive a little bit to do it. There has always been a really big Arab population and community.

“I had never met another queer Arab person until last year. I went to a conference and was desperate to meet somebody else who was like me, so I would go around saying random Arabic phrases seeing if somebody would recognize it.”

Also, the church that I went to growing up was basically Episcopalian — but the thing is, when everybody came to the U.S., somebody from the church taught them English, helped people get jobs and find houses, taught them how to use sewing machines, all these things. So everybody went to that church. And now it’s dominated by Syrians, so it’s not the Episcopal, progressive narrative we hear all the time. It’s still very conservative and morally strict. So we all went to the same church, went to the same doctors, lived in the same neighborhoods. It’s just a community, together, all the time.

That sounds awesome on one hand, but something that insular…

It can be suffocating.

Right. And when you first reached out to me about this interview, you mentioned that you’re only out to your cousins. Is that because of the strict moral value system, or…?

Yes. I had never met another queer Arab person until last year. I went to a conference and was desperate to meet somebody else who was like me, so I would go around saying random Arabic phrases seeing if somebody would recognize it.

Did that work?

It was ridiculous, but yeah! There was nobody who was out, because there’s not a space to be out in the Arab community — at least in mine. Because we’re a little more conservative than others. I didn’t know being out was an option. So yes, I’m only out to my cousins. Because it’s not like my parents will disown me and then I can go stay with a cousin. It’s the whole community: you’re out. So you lose the connections, you lose the support. And it’s really nice to have that support — like if someone is struggling financially, everybody else comes and helps. If somebody’s struggling medically, everybody comes to help. Losing all of that is losing all the ties that I’ve grown up with and ever had, so that’s not an option for me.

Do you think it’s not an option right now, or not an option ever, or both?

I think right now. This is gonna sound really bad, but I’ve thought about it. I love my Situ, my grandma, so much — she means the world to me and helped raise me. She’s a strong woman, even though she had to be quiet all the time when she was married. I think she’s kind of the biggest person who’s stopping me. And it’s not anything against her, but she’s kind of the last person that I’m most afraid of letting down. When she passes away, I’ve thought about writing her a letter and coming out to her, but I don’t know.

That could open up possibilities for me and my cousin, who’s also queer. We have this pact: he’s gonna marry his lesbian best friend and I’m gonna marry my gay best friend. So we’re both marrying the “right people” — we can have the family wedding, and we can do our family “right” — but then we can be in our own relationships. So when she passes away maybe we can, like, tell some aunts. Maybe. But that’s the only possibility. I would never be able to be out to my older aunts and uncles. The older community is just not here for it at all.

“It’s not like my parents will disown me and then I can go stay with a cousin. It’s the whole community: you’re out. So you lose the connections, you lose the support. Losing all of that is losing all the ties that I’ve grown up with and ever had, so that’s not an option for me.”

I think people forget that. Everybody thinks things are a lot easier for queer folks of our generation, which in some ways they totally are. But it’s one of those things that white cis people in particular tend to romanticize — like “Oh, you’re fine! Everybody loves gay people now!” I’ve screwed that up way too recently.

Right! Like, I help run the LGBT group on campus here. And a lot of times, all the queer narratives that we hear are white. And that does not apply to me at all. I can’t relate to any of it. So I’m part of this group that, yes, I have an identity in common, but my experiences have been so different, it’s almost like I don’t even belong. I have to find niche communities that I can understand.

If we could paint the “typical” queer person, they’d be white, cis, thin but built, able-bodied, and super hot. And we really blow that image up into “This is queer life!” And so being queer and disabled and of a different culture, you’re in a smaller and smaller niche. It’s nice to be in a niche where other people get it — but why does that niche have to be, like, one person? Why do we only get one tent at Pride when there are thousands of white cis gay guys in a hundred different tents?

“A lot of times, all the queer narratives that we hear are white. And that does not apply to me at all. I can’t relate to any of it. So I’m part of this group that, yes, I have an identity in common, but my experiences have been so different, it’s almost like I don’t even belong.”

Being on the outside of a community is weird, because you get to see everything going on, but you can’t always participate because it doesn’t always apply to you. Like, in high school, there was this LGBT resource center in the city. I would always tell my mom that I was going to a friend’s house, and then I would go there for a meeting or whatever. And it was far enough away that nobody would ever see it, plus it was in the gayborhood, which my family would never go to. So I was good. That was the little refuge that I had. But even there, there was only ever one other disabled person, and it’d just be us in the corner talking.

Have you been out as disabled your whole life?

I haven’t. In my community and family, you don’t talk about things that are “wrong” with you — you don’t say, like, “Oh, I’m sad about this at work, or stressed about this at school.” You just support everybody else and don’t focus on yourself. So I think I’ve always deflected any attention that I get. There are certain circles where I can be like “Yeah, I feel like shit today,” but not everybody. I try to hide a lot of how crappy I feel for the comfort of everybody else. But that’s what everybody does, you know what I mean?

I think that’s really common, especially among disabled people. “No, it’s cool, I’m fine!” Because you’re taught that repressing and handling your shit is sort of a must. And the minute you let it “control you,” that’s when people start to get uncomfortable.

I only really started to talk about being queer and disabled when I got to college. Because there are more spaces. I can be out in college, I can be myself in college, because it’s far and disconnected from my family. My name never goes anywhere near the LGBT community, except for running the group — but then I can just say “Oh, I’m an ally!” But I can be me here, which is nice. Having more space to talk about it is a relief, because you’re holding a lot of stuff in. It’s hard going through life not being able to do the same things that your friends can do. But it’s nice to have a space to discuss that.

“I’m privileged enough that I can hide my disability for a while… until I can’t. But that is a big privilege. A lot of the time disabled folks will come into a room and that’s the first thing you see. And you don’t necessarily want that, because then you get tokenized.”

So have you always identified as disabled, or is that something you came to later?

I didn’t know that was a thing that even applied to me until college. Which sounds really stupid to say, but I never knew there was an out disabled community online that was talking about more than, like, mobility issues. Because the common narrative we see with disability is “Oh, you’re in a wheelchair,” or blind, or deaf. It really ignores invisible disabilities, and chronic illnesses, all of these things. When I finally found that community, it was really nice to feel understood. I didn’t know that I had a part in it before.

Especially with invisible stuff and chronic illness, like you were saying — but I have cerebral palsy that’s been very visible for my entire life, and there’s still this impulse to distance yourself, if you can, from the community and the label. As if it’s a bad thing that you shouldn’t want around you. It took me until after college to figure it out.

Right. When I found disabled community, it was largely online, through YouTube. My whole life was on YouTube. Closeted queer kid! I would just follow every single queer person I could find. And Annie Segarra was my first “in” into the disabled community online. She made the videos so accessible and easy to understand. So I think that really helped me get that other people are experiencing similar things. For me, I’m privileged enough that I can hide my disability for a while… until I can’t. But that is a big privilege. A lot of the time disabled folks will come into a room and that’s the first thing you see. And you don’t necessarily want that, because then you get tokenized.

“The fact that they’re totally fine with [my disability] and it’s automatic is really nice. I’m not pressured or left out of things; we can be together without doing things that I have to stay on the sidelines for.”

How have your cousins shown their support for you?

The way that they’ve expanded their language, for one thing. It’s not like “Oh, your future husband.” Because we talk a lot about marriage, since it’s really pushed on us, especially at my age. In the Arab community, weddings are like Christian Mingle in real life. Your grandmothers and aunts will be like “Look, here’s a good Arab boy for you!” and pin us off to other people. So we always joke at those functions and stuff, like, “Oh, are you going to marry Jacob? But you’re probably more into Fatima over there.” It’s funny for them to be able to acknowledge that I’m not going to be marrying some “good Arab boy” and nice that they can expand their language that way. It sounds little, but that’s actually a really big thing.

They’ll also show me that they support Pride events — like, we go to Pride two hours away so we can say “Oh, we’re going to this concert.” But we all crammed into this van and went to Pride instead. They’re willing to go out there just to show me that they accept me and are totally cool with it, which is really, really nice to feel.

How have they been with disability stuff? Do you talk to them about that?

We’ve grown up with it. My energy levels are very low sometimes. It’s been getting worse as I’ve gotten older. As a kid I could do most things, but now going up the stairs some days is really hard. Or I can’t just go off and run six miles with them. So getting used to the fact that sometimes, hanging out with me means sitting and chilling instead of doing some crazy adventure. The fact that they’re totally fine with that and it’s automatic is really nice. I’m not pressured or left out of things; we can be together without doing things that I have to stay on the sidelines for. And when I’m sick they’ll come hang out and bring me snacks and be fun.

I get that! When you’re in the hospital and have friends who come see you, it’s like “Well, this is the low point of my life, and you’re still here.” It can really speak volumes.

Right. And they don’t make my disability feel like it’s everything. We don’t talk about it a ton; it’s just “Oh, these are her limitations, and we’re good.” It’s not something I always have to think or talk about, which makes it easier to deal with.

“‘Terror countries’ just means any brown country in the Middle East, but also Mexico and anywhere else that you’re brown. It is so bad right now… Remember that immigrants are people, refugees are people. When one bad thing happens, we can’t just target an entire group.”

With all this in mind, is there anything you want our community to know about the war in Syria, the election, or the U.S. political climate in general?

Trump is not our biggest friend, at all — so Arab Americans and Muslim Americans as a whole are pretty scared. Even with Obama, it was rough. Post-9/11, there was a very significant line drawn. Life changed a ton. It’s not like there was no discrimination or hate crimes before, but as soon as 9/11 happened — even I remember how much it changed, and I was really young. Everything got a lot more dangerous for the community. There’ve been fire bombings at mosques and liquor stores, people spray painting “terrorist” on my uncle’s garage. And we worked so hard to be in this country. My Gidu, my grandpa, was so happy to be an American; every time he would say something about America, he would basically shout it. But for me, being a second-generation American and seeing him so happy in a country that doesn’t want him is so hard to swallow. He loved it because it was so much better than his life back home. But I wanted this country to be better for him.

I’m working to bring Syrian students who are displaced by the war to colleges in the U.S. They want to continue their education here after their schools have been destroyed. But I feel so bad that I’m bringing them here, to this country, at this time, with people all over the country saying we’re all terrorists or evil people, or thieves, or whatever horrible thing. It just feels so crappy that this is the better option, and I want this option to be so, so much better.

“There’ve been fire bombings at mosques and liquor stores, people spray painting ‘terrorist’ on my uncle’s garage. And we worked so hard to be in this country. My grandpa was so happy to be an American… but for me, being second-generation and seeing him so happy in a country that doesn’t want him is so hard to swallow. He loved it because it was so much better than his life back home. But I wanted this country to be better for him.”

“Terror countries” just means any brown country in the Middle East, but also Mexico and anywhere else that you’re brown. It is so bad right now. And I think I just want people to understand that immigrants and refugees — this country was built on the backs of people of color who did not have the privilege of growing up here all their life, being able to take and take and take. Remember that immigrants are people, refugees are people. When one bad thing happens, we can’t just target an entire group.

“People deserve to be safe in this country. We’re not.”

After any terrorist attack, we’re all sitting on the imaginary couch together being like “Please don’t be brown, please don’t be brown, please don’t be brown.” And it’s not even a joke. The hate crimes go up so much after each attack; every time something happens, it makes it so much worse for us. But this is not representative. School shooters don’t represent white guys — but when you think of Syrian people or Arab people, you think of terrorism. I wish we could reroute that whole narrative. Because people deserve to be safe in this country. We’re not.

*Emily is her chosen pseudonym.

Queer Crip Love Fest: Nobody Can Go Through This World Alone

Feature image photos by Sofia Lee

Okay, everyone: I know what’s happening tomorrow, you know what’s happening tomorrow, and if you’re a regular reader of Queer Crip Love Fest, chances are you’re pretty torn up about it. I, for one, have been dealing with a low rumble of nausea all week (or since about November 5, really) and want to spend these closing hours of the Obama era reminding myself how and why to keep fighting. So, in the spirit of gathering our strength and resisting the living hell out of these next four years, I bring you our sweetest installment to date — along with some notes for the revolution.

Yael is a 22-year-old agender trans woman living in Seattle who described her relationship with her girlfriend Jarreau like this:

“After a night in late July when I got my first choker, we ended up hooking up and from there on, our subsequent encounters made us realize how gay we are for the other person. We’re both really goofy and silly and we’ll crack jokes with each other all the time, and whenever there’s serious stuff we need to talk about, we affirm each other and figure out how to grow in caring for each other. Whenever I feel really emotionally drained or something bad happens, I can go see her and just rest in her warm presence.”

Don’t you want to meet them? Just for that choker story alone? I did too. So read on and remember, my fellow resisters: love won’t save us on its own, but it certainly helps along the way. We love you and we are here.

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So you recently moved to Seattle, and you met your girlfriend soon after, right?

Yep! I first visited last summer back when I was dating an ex of mine. It was only a visit, but as soon as I got up here I felt like I had fresh air and wasn’t extremely anxious all the time. So I figured out how to make it work and finally moved to Seattle back in March. I found this amazing group of friends and two of the people I’ve had romantic and sexual entanglements with, all in the same night and at the same place. I met Jarreau there but we were only acquaintances after that.

Tell me more about it! Did you approach her or vice versa or both or…?

Having moved to a new city, I was like “I don’t know anybody here, I need more friends because I feel so isolated right now.” So being the little social butterfly I am, I was chatting up a storm with just about everybody, and I was like, “She’s cute and I like talking to her but I don’t think she’s interested in me, so I’ll file that away and we’ll be friends,” which is a super easy mental process for me.

Once we became friends, I had walked to Capitol Hill with my cane, and I saw her sitting on the stairs of some building eating a burrito, and I was so excited to see her. Because while I had built up the skeleton for my current set of friend groups in Seattle, I wanted to nurture and blow on every little flame of friendship I saw. We ended up having a really exciting conversation and made plans to meet up later that day for coffee as a “friend date” —

Ah yes, the friend date. Ambiguous yet promising.

Yeah! And she told me a while after that, one of the things she really loved about that encounter was how excited I was to see her. In hindsight, it was the classic meet cute and it was amazing. When we met up later that day it was a few hours of sweet and interesting conversation. Another time after that, we went to visit a different friend but ended up just talking to each other and eating some bowl of chocolate in the shop where our friend worked. I don’t know what it was exactly, but all the little seeds of a crush she had for me blossomed into a full-on one.

“One of the things she really loved about that encounter was how excited I was to see her. In hindsight, it was the classic meet cute and it was amazing.”

That is so sweet, I love it.

But I was completely oblivious! So after that, we bumped into each other a few times at this rooftop summer LGBT party and this amazing bar that’s really faggy and dykey. During that same time, a complicated thing started with an older cis woman friend of mine. We both had feelings for each other and stuff happened, but she wasn’t ready for a relationship, which made things complicated to navigate emotionally, and that was hard.

So I ended up thinking, “Theoretically, I’m poly, I need to have a week where I’m super slutty and get a lot of attention.” So that was when I bought my first choker. Both because it’s a trans woman thing, and I’d read some article that jokingly said that after women get a choker, they have a lot of sex. So I went to Claire’s, got this cute lacy choker that had a metal heart attached to it — and who do I run into, but my soon-to-be girlfriend. I swear, that choker was a fucking miracle.

Later that night we were at a bar and I told her about how I want to have many slutty and gay escapades, and then she asked if I wanted to sleep with her, making sure to clarify only if I wanted to and it was only a suggestion. It took a second for me to refile her in my mental categories, because I hadn’t realized she was interested. After that, I was super enthusiastic. So we hooked up in one of the bathrooms there.

“Being the silly and cheeky person I am, decided to be cute and poke fun like ‘That’s cute that you called me your girlfriend.’ And she was like ‘I didn’t, but that’s actually a really great idea and I’d love to be that with you if you want.'”

YEAH YOU DID. So was it officially on after that?

We decided to hook up again several times and in my mind, it seemed like a friends with benefits situation. But then we both caught emotions for each other, and ended up going on several dates. One night was super romantic — dimmed lights, all that — and at one point, I thought she had called me her girlfriend even though we weren’t official at the time. Being the silly and cheeky person I am, I decided to be cute and poke fun like “That’s cute that you called me your girlfriend.” And she was like “I didn’t, but that’s actually a really great idea and I’d love to be that with you if you want.”

So cute! Oh my.

From that point on we threw ourselves into the swing of things while we slowly figured each other out and what our dynamics were going to be. In some ways it was really easy, both of us being trans women, and nonbinary trans women at that. In others we were different, with me being physically disabled and younger than she is, and her being Black. So we both went through this process of “Is she going to be respectful and mindful of power dynamics?” and ultimately, yeah, that’s how it turned out.

We both realized this is a constant process and there’s an important ethical responsibility in handling power differences for the both of us. We always grew and affirmed each other. Even when we weren’t talking about power differences, we were both thinking about what the proper ethical actions are to go through our dynamics. I care about her so much and love her so much, and she loves me.

I’m wondering how poly plays out for you, especially intersecting with disability and race and gender and all of your identities.

I tend to avoid poly communities as much as I can, except if they’re LGBT. Hetero-aligned polyamory is such an utter nightmare. Straight poly communities, to me, have always stunk of domination by popular dudes trying to get laid as much as possible. I got into polyamory originally because I was really attracted to the radical love part of it, how in the right circumstances, it works very well to build social infrastructures and support networks.

“So much of the Poly 101 info out there is catered to neurotypical able-bodied folks. So disabled poly folks have always had to find each other and through the lessons we’ve learned, build our own 101s, our own communal reservoirs of advice and wisdom and possible paths.”

I’m physically disabled and I need to be able to access caretakers now and then, and spreading it out versus focusing it on one person is a survival strategy I have for avoiding a caretaker turning on me and becoming really ableist. Also, with my bipolar disorder, I deal with such intense emotional energies all the time and such a strong desire for attention, and poly is a coping mechanism for that. I don’t have to worry if one person is not giving me affection at the time, because a bunch of other people are!

That’s great!

I’m also moving and encountering and growing through this world with the trauma I’ve had to deal with. To be perfectly honest, I would not have survived if it wasn’t for my friends and support networks, social infrastructures and communal fabrics. They’ve always helped me to cling and hold tightly to life. Nobody can go through this world alone, nobody. We’re embedded within webs of relations and it’s such an important value to me: interconnectivity and interdependence, mutual self-care.

Navigating polyamory with mental illness and neurodivergences is such a task, because for a while, you have to learn the hard way how to do it yourself. So much of the Poly 101 info out there is catered to neurotypical able-bodied folks. So disabled poly folks have always had to find each other and through the lessons we’ve learned, build our own 101s, our own communal reservoirs of advice and wisdom and possible paths.

Yes! As is the case with a ton of sexual communities, including the queer community at large, I think.

With race, I’m always thinking about how my whiteness impacts my relationships, and even if a lot of white LGBT folks don’t like to talk about it, we all have the subconscious and sometimes conscious urge of the whole white picket fence, 1950s path of relationships, and it’s a constant and ongoing process for us to critique and move against that. In dating, sooner or later, you’re going to have a partner who’s BIPOC and there’s an ethical responsibility to constantly manage our whiteness.

“We need to constantly figure this stuff out and hold other white people accountable because if we don’t, sooner or later, a person of color is going to be forced to do emotional labor they don’t want to do, and there’s an ethical responsibility to prevent that. It’s a process of regularly giving space to the people of color in your life for them to do their own thing.”

A common mechanism in a lot of interracial relationships is that white folks take up way too much emotional energy and way too much space. Like, we need to constantly figure this stuff out and hold other white people accountable because if we don’t, sooner or later, a person of color is going to be forced to do emotional labor they don’t want to do, and there’s an ethical responsibility to prevent that. It’s a process of regularly giving space to the people of color in your life for them to do their own thing. It’s a constant process, you can always fuck up, but you need to hold yourself accountable and grow.

We do have a knack for the fuck up, yes.

My girlfriend has this saying: “I don’t try to be perfect, but I always strive to always do better.” Which is an A+ ethos, to be honest.

That’s fantastic. Solid words to live by.

In terms of gender, that’s a whole thing on its own. So many cis LGBT folks have such a narrow, homonationalist view of their futures. They see potential years and decades and lifetimes with other cis people they find cute, but so many times, when they look at trans women, they don’t see futures in us.

What a spot on way to say it.

They see us as short flings, as experiences to try. And it’s really frustrating because like, I’m not at all a separatist — I think that goes to bad places — and I have many cis folks in my life who I care bunches about. But so many times, cis people in general don’t get it.  Like, I want to be around you but I need you to do the work that comes with critically examining and undermining your role in cisness in a way that isn’t the whole performative ally thing. And so many cis people aren’t willing to do that. Gender fucks up everybody, trans and gender nonconforming and cis people.

“They see potential years and decades and lifetimes with other cis people they find cute, but so many times, when they look at trans women, they don’t see futures in us.”

A lot of the time, trans women signify the dramatic contradictions within gender just bubbling under the surface. We corrode the toxic cisness of their milieus and networks and worlds, and they’re not willing to give up the material positions of cisness and the comforts and resources that come with that. I’m super sapphic, but there really is so much cisness in a lot of WLW communities. Women-aligned gay spaces don’t do the work of making an atmosphere that welcomes and centers trans women. They pay lip service a lot, but they’re more likely to produce infrastructures and networks and fabrics that only provide for cis sapphic folks. At the end of the day, cis sapphic folks and sapphic spaces need to centrally dwell on the questions of “How do we undermine cisness in this space and provide the resource networks to trans women that cis sapphic folks already have?”

We should all go ahead and tattoo that question on our foreheads. Were you your girlfriend’s first exposure to disability politics?

I don’t think so? I think she’s encountered it. I think I’m the first physically disabled person she’s dated, though. When I asked why she was never ableist towards me and respectful of my physical limits — her answer, oh my god. It made me so happy.

Tell me! What did she say?

She basically saw that sooner or later, everybody is going to encounter and enter into positions of disability. For most people, that usually happens when they’re older. But knowing that, she realized it was something she had to honor even though she’s 90% able-bodied at this point. She realized that navigating ableism and her position as an able-bodied position in relation to physically disabled folks was going to be a constant thing.

That’s an incredible response, and very perceptive.

I can visibly see she’s willing to do the work and accept the ethical responsibilities of encountering others who are marginalized in ways you’re not. Like, if I’m having a fibro episode, she’ll walk me through it, ask what she can do, and most importantly, respect my consent. She doesn’t act like physically disabled bodies can be used as toys.

“Are they going to explode and make a big deal out of a small basic need and get resentful for addressing needs that, if they were coming from an able-bodied person, they wouldn’t blink twice?”

It’s worth mentioning how patronizing able-bodied people can be. They treat us like beautiful props and displays to have around, but they don’t respect our consent and autonomy. They just treat us as furniture, at best, to move around — and at worst (which is a lot of the time), they treat us as broken tools and utilities. They try and extract labor even though that’s not going to happen. Our bodies simply can’t do that, and they get really frustrated with that. Which, to be honest, is a common tendency in our ableist and capitalist society — how so many people treat others like tools, thinking “what can I use this person for?” It’s not just a toxic attitude but a violent and abusive logic common to so many institutions and networks.

Do you feel that weight in your relationship ever, of the expectations people have about disabled folks and our able-bodied partners?

Oh, that I’m expected to do all the emotional labor just so they can be the “good” able-bodied person? That has happened occasionally. Not with my girlfriend or my sweet friend or most people I’ve had romantic and sexual encounters with lately, but it has happened before, and it’s really frustrating. Because one of the things that has always made it hard for me to ask for help sometimes, is I’m worried about what the other person’s reaction is going to be.

Right, same.

Are they going to explode and make a big deal out of a small basic need and get resentful for addressing needs that, if they were coming from an able-bodied person, they wouldn’t blink twice? So through a lot of trial and error, I’ve learned to suss it out. At the end of the day, if an able-bodied person is not willing to do the work that comes with the ethical encounter, I’m not really interested in dealing with them regularly.

It’s why I left my family, because apart from a small handful of people, they could never understand and affirm me. They always treated me either like a beautiful prop or a broken tool, and I figured I deserve way better than that.

“It’s not ‘we’re all the same, we should all love each other’ but more like, everyone won’t be like us, there will be differences, there will be divides, but what matters is how we go about affirming those differences. Not idealizing and projecting on others, but seeing how we can grow together.”

You are absolutely right, and I’m so glad you got it. So what does love mean to you?

Wait, sorry, my girlfriend is just starting to wake up and she’s being super sweet, oh my god.

Aww hiiii! That timing could not have been better.

Okay, love: that’s a big question. Being the philosophy nerd that I am, I would say this comes down to ethics. Every day we encounter other people, each who may or may not share some commonality with us. In every encounter, there’s an important and strong ethical responsibility to affirm the other, and that responsibility is a constant process. We can’t belittle or fetishize the other person; we have to respect and encourage their autonomy, not just on a personal level, but also in the encounters between milieus and networks.

We have to build up an ethical, communal fabric. Not a “community,” per se. Communities are imagined groupings, they depend on borders and limits, they require enemies and scapegoats; they’re filled with egocrats who care more about their own universes rather than encouraging growth and change and healing and affirmation. Communities get so fucked over by a particular sort of desire and envy of, “Why does this other person have this thing? I want that thing,” and it leads to so much lateral violence. Building an ethical, communal fabric is about making a break from that: about styles of care where we affirm and respect and love each other and no matter what the circumstance, we all dream for a better world, we constantly work on healing whatever traumas we carry, and push toward common goals.

It’s not hippy-dippy “we’re all the same, we should all love each other” but more like, everyone won’t be like us, there will be differences, there will be divides, but what matters is how we go about affirming those differences. Not idealizing and projecting on others, but seeing how we can grow together.

All so true, and really well put! I think that’s all crucial to keep in mind as we move into the Trump era, too.

Serious Love, whether romantic or sexual or platonic or whatever, requires us to actively respect and take on the task of ethical responsibility towards the other, to build an ethical communal fabric that will always defend each other and grow with each other and never ever forget that healing is the number one task that can never be dropped or disregarded.

As soon as you forget about healing and often the momentous tasks and exchanges and reparations that come with that, everything gets fucked up. You’re never obliged to be around other people, but you are obliged to take seriously the task that we don’t hurt the people we are around. And whether between power differences or laterally, we can never stop taking that seriously.

Queer Crip Love Fest: Online Friendship in the Fight Against Trump

I grew up without any disabled friends. Consider what that means for a second: we’re one-fifth of the American population, the largest minority group in the world, but I didn’t really know anyone who lived in a body like mine or understood what it’s like to get cut open every few years until after I graduated college. My parents tried to fill the void through Challenger baseball teams and phone calls with so-and-so’s nephew who also has cerebral palsy, but the bonds never stuck beyond the end of the season or when we hung up.

Ableism played a big role, truth be told: the structural kind made it tough to find each other, and my own helped me assume we didn’t need to. As someone who holds her own in the able world, I didn’t realize that I’d been absent from my own community for over two decades. No one expects a queer person my age to go it alone for that long — but isolation is still part of the disability equation.

I finally found my fellow disabled folks through the internet, which is no surprise. Ali hit the nail on the head in her recent Queer Your Tech: “Communities whose members were fewer and more spread out found a way to cheaply congregate over long distances… The relationships we forge in cyberspace don’t stay there. They have consequence in the physical world.” I’d argue that goes double for disabled people, who know the impact of those “long distances” all too well. And Buffalo-based writer Angel Powell has a lot to say about it.

Angel’s essays and poetry explore the intersections between sex, gender, race, love, and disability. In “I’ve Never Been In Love, But I Know I’m Not Ready,” she outlines how standard-issue romance doesn’t quite cut it for lots of disabled folks:

“I am a giant fan of romantic comedies and for a long time I naively believed that was how love actually worked. For a while, I told myself it had to wait, I had to be in the right place with the right people, and that life was so much bigger than high school. I was right about life being bigger than high school, but… I didn’t understand why love just wouldn’t happen for me. I knew that it might be harder for me than for my able friends, but it felt like it was just skipping me completely.”

We talked about how online friends can become family, disability’s place in activist spaces, and what the Trump era holds for disabled people of color.

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What does love mean to you?

I have a very interesting relationship to love. Because technically, the only love I have is platonic — romantic love just does not seem to work out for me. In my last year of college, there was this girl I’d fallen in love with, and she was really nice to me. No one had ever been as nice to me as she was. She was able-bodied, and I thought she was beautiful, and smart, and funny, all those things that you think when you see a girl and you’re like “oh my god.” But I found out she had a boyfriend, and then she told me she had a brother who has autism, and I’m like “that’s why she was nice to me this whole time!” There’s this extra sting that comes with it. In that moment, you didn’t see my humanity — you saw me as a person to feel sorry for. That’s not cool.

When you’re in a chair, women aren’t thought of as sexual. In the able-bodied world they’re taught, directly or indirectly, that we’re not supposed to be desirable. And then there are people who feel like “if I get with a person in a wheelchair, I’m a hero.” No you’re not! I went to school with a guy who was a Paralympian, and he had girlfriends the entire time I knew him. I thought it was very funny. If you’re a guy in a wheelchair, people will gravitate toward you. I thought it’d be the same deal with me, because I also date women — and then it wasn’t.

My experience with romantic love (or lack thereof) makes me take my platonic relationships more seriously. Knowing they may be the only ones I have saddens me sometimes, but my friends accept me in all forms.

Are most of your friends able-bodied, or disabled, or do you have a mix?

Ninety-eight percent of them are able. I didn’t get more disabled friends until the internet. When I was growing up in school, I didn’t have very many friends. I did not like school at all. The first school I went to wasn’t actually in my city; it was in a suburb an hour or two away. That’s where the county chose to send me to because there were more kids with disabilities out there.

“There are people who feel like ‘if I get with a person in a wheelchair, I’m a hero.’ No you’re not!”

I don’t remember having problems being in a wheelchair around other people until about third grade. Because we don’t teach kids about the fact that people look different in the world. We teach them about race, gender, all that, but we don’t teach them about ability. So what frustrates me is that I [was] a normal eight-year-old just like every other person in third grade, but I get stared at more. And more of my gestures and things like that are made fun of. And I don’t think I realized how deeply ingrained that stuff is until I became an adult.  And the internet kind of brought me to a space where, with able-bodied people first, I could be judged a little less. Because you didn’t have to look directly at them.

Does that make it easier to talk about disability with them?

With one of my closest friends, V, I didn’t have to explain much to her because we didn’t become friends until after working together. I connected with her on Twitter — she’s a writer also, and I really liked her work — so we worked together as writer and editor and I wrote this very detailed, intimate essay about what it’s like to balance having cerebral palsy with having major depressive disorder, and having those two things cross wires. So it was already on the table for her, whether I liked it or not. And I see our friendship in a unique light, because I feel like if you can know all that stuff and you can still choose me… well then, yeah.

What do you think she does well as a friend?

I’ve never felt like I had to be somebody else. I don’t have to act like I’m not bummed out by shit every day. Y’know, truly, I am! So I’m really grateful that I don’t have to show up and be some different person. I have to have other people help me go to the bathroom, help me get dressed and undressed. All of these things that, because the able-bodied world isn’t taught about respecting others in different positions, people would normally push that away or be weirded out. And with her — it may be because we’re grown-ass women — she didn’t.

“I’ve never felt like I had to be somebody else. I’m really grateful that I don’t have to show up and be some different person.”

My other friend I met on the internet, C, wasn’t as familiar. We didn’t have a working relationship before friendship. So I had to get used to telling her certain things about me. I have hemiplegia — one side of my body is much stronger than the other — so I was explaining to her that when I do things, I have to be slower, because I can only use one hand. And she was like “you can only use one hand?!” It flipped her out! Not in a bad way, but just an “I didn’t know that existed” kind of way.

Are C and V different than the able people you encounter offline? Do you think the internet plays a role in that?

To be honest with you, yes. They know I love them both, but I feel like if I had met them in person, it would have been way too fucking awkward for anything to actually happen. I’m an awkward human being and an introvert, point blank. I only have a certain amount of energy in terms of being out in the world and interacting with other folks. So if it wasn’t for the internet, I don’t know if our friendships would exist right now — and that makes me very, very grateful because I’ve learned and grown a lot being friends with them.

What have you learned?

I am entirely way too mean to myself. I’ve been in a chair my whole life and I guess some part of me thought “if you strive to be perfect in other ways, nobody else will notice.” And that’s not really a real thing — they’re gonna notice regardless. So for both of them to be like “you gotta calm down, you’re way too mean to and hard on yourself,” that makes me feel really good as a person. They can see the stuff that I can’t. I don’t see it, necessarily, as me being too hard on myself. I see it as “these are the things that have happened to me.” And once they’ve talked to me about it, I’m like “damn, that is a really high expectation.”

“I only have a certain amount of energy in terms of being out in the world and interacting with other folks. So if it wasn’t for the internet, I don’t know if our friendships would exist right now — and that makes me very, very grateful.”

I’m the same way — it’s not until somebody says it back to you that you realize it sometimes. Who reached out first?

I’ve been friends with C longer; I’ve known about her for about four years and been really good friends with her for two. She put a sense of normalcy and a very steady pace in my life. But it also scared the hell out of me. Because I’d never been so close with anyone — I’m not necessarily close with my biological family — so I could talk to her in a way I couldn’t talk to anyone else. I was afraid that I would get so comfortable that one day she’d up and leave and I wouldn’t have that anymore. And what am I supposed to do then? So I was always very, very afraid. I’m not used to having someone be like “no, I’m here, I swear.” And it wasn’t until her that I thought “okay, maybe I can calm down.”

“I think about people who had disabilities in the 1950s and ’60s, and they stayed in group homes and didn’t interact with anybody beyond the other people there. How much does that sort of thing affect your growth as a person, mentally and emotionally? We are so focused on physical growth that we don’t think enough about how people are growing emotionally.”

It’s so important to have people like that around. I feel like that’s something a lot of people expect from their biological families, who may or may not be able to come through.

I feel like when you have a disability — maybe it’s just a “being in a wheelchair” thing or a “mobility device” thing — when I was a kid, I don’t remember being held a lot. Because why would you do that if I have a wheelchair? So the affection that comes from that tactile relationship, that is not stuff that I think anyone around me could deliver. It wasn’t until I met my friends that they were like “seriously, I think you’re amazing.” I’m an “I love you” person, and most of the people around me aren’t. But with my friends, I am, and they don’t care.

I’m so close to my friends that I’m not sure anyone else could meet the same standard that they’ve set for me. My therapist always tells me “you have to go out and meet more people; just having online friendships is kind of cheating.” But that’s totally not cheating!

Not at all! And I think it’s that way for a lot of disabled people — able folks like to dismiss online friendships and communities, but what if the world is a hostile place? Then what?

Right. And I think about people who had disabilities in the 1950s and ’60s, and they stayed in group homes and didn’t interact with anybody beyond the other people there. How much does that sort of thing affect your growth as a person, mentally and emotionally? I think we are so focused on physical growth that we don’t think enough about how people are growing emotionally. You can be an adult on the outside and still have very childlike emotions because those are real experiences for you.

“If you’re a person of color and you’re in a wheelchair — and if you’re a queer person in a wheelchair — there’s this idea that you don’t count in the movement of people of color trying to express how white supremacy has affected them, and you don’t count in this group of queer people talking about how the patriarchy and the election of Donald Trump has affected them… How am I supposed to embrace all of those identities if you keep shutting me out?”

Anyone who’s grown up with any sort of trauma — which I would argue is all disabled people on some level — that internal conflict can come up. And you have a completely experience with that than I do, as a person of color.

In terms of identity, I knew that I was Black, but I always felt like my race isn’t what makes me stick out — it’s the fact that I’m in this chair. Intersectionality is a very new idea; that wasn’t a thing when I was 11 years old. Not by the same name, and not as heavily academic as it is now, anyway. So I didn’t really think about the different types of intersectionality among people I met in wheelchairs or with disabilities, period. Everyone thinks the representation of disability is a white male. If you’re a person of color and you’re in a wheelchair — and if you’re a queer person in a wheelchair — there’s this idea that you don’t count in the movement of people of color trying to express how white supremacy has affected them, and you don’t count in this group of queer people talking about how the patriarchy and the election of Donald Trump has affected them. It’s a very weird space to be in.

Whatever your identity is, that’s supposed to be your safe space. What if there’s just no space for me? Maybe in each one of those spaces, I have to be a different person. There are disabled people in those communities, and we deserve to be acknowledged too. That stuff can get a little frustrating. How am I supposed to embrace all of those identities if you keep shutting me out?

I think the tendency among white disabled people is to put disability first and whitewash everything else out of the equation. Even under Trump, white disabled people are categorically safer than disabled people of color are.

Absolutely. I’m genuinely terrified of a Trump presidency. I remember getting the final result at three in the morning and crying. I’ve never felt so personally attacked before. My college was a very private college, which also means it was very white. I had friends — both straight and queer — who voted for him. Why? All through the election, I kept making the analogy of a cow voting for a slaughterhouse. I feel like if you voted for him and you said you were my friend, you just voted against me.

People are like “oh, it’s going to be fine.” No — it’s not going to be fine. This man knows absolutely nothing and keeps appointing people in his cabinet who don’t know shit either. It’s very dangerous.

“This election was not the election to play with. We were so, so confident this was not gonna happen. But in the back of my brain, as a marginalized person, was ‘what if this does happen?’ As a disabled person who, at this point in my life, relies a lot on the government, that shit is truly terrifying.”

Did you talk to C and V after the election?

I did — they’re also both women of color, so they were definitely my safe space. The four days following, as more things were starting to come out about the rise in hate crimes, just going through all of that and thinking “I can’t do this, I can’t get out of this bed today, this is not gonna work,”  they’d be like “no. I know you’re upset, but you have to.” In the same respect, I’m about to move out of my mom’s house for the very first time. I’m excited! And to be on the cusp of that stuff, and then to get this damn election result, I was so mad.

Because of my depression, I take things that don’t turn out the way I’d like them to very hard. I’m a very emotional person. I told V, “I don’t want to fill out apartment applications anymore.” And she said “no, you can’t just roll over and die, that’s not about to happen. You have to do this anyway.” Plus, the morning after the election was when writers and editors from every publication possible started taking submissions about it. And I didn’t contribute anything, just because I couldn’t contribute anything that was a) brand new and b) clear enough for me to express the rage I truly, truly felt. For me, writing is a very political act. At the same time, this was so crushing that I don’t think I could do it in that moment.

“People are like ‘oh, it’s going to be fine.’ No — it’s not going to be fine. This man knows absolutely nothing and keeps appointing people in his cabinet who don’t know shit either. It’s very dangerous.”

The day after the election, I was supposed to go to therapy. My therapist is a white woman. And they called me to say she couldn’t come in, and I breathed this sigh of relief. Because even though we had very similar views, I just didn’t want to talk to her. I wasn’t magically angry at a bunch of white people — I just didn’t want to talk to anyone else about the problems I was going to face as a person in a wheelchair, as a queer person, as a  person, as a poor person. I just was not ready.

I know the key to ending ignorance is education, and that’s why I like to talk to people about disability. At the same time, I’m not about to expend this energy on trying to teach you when I know you’re not going to give a fuck. This election was not the election to play with. We were so, so confident this was not gonna happen. But in the back of my brain, as a marginalized person, was “what if this does happen?” As a disabled person who, at this point in my life, relies a lot on the government, that shit is truly terrifying.

How have your friends stepped up in the midst of all that fear?

Growing up, I had the worst self-esteem imaginable. I wasn’t taught that I was valuable or pretty or loved or any of that. That’s still a journey to this day, and I’m 24 years old. It boggles your brain a little bit. To know that I’m loved, it has to constantly be reinforced. I hate saying that out loud, but it’s true. The other day, C came to me and was like “how can I be better supportive of what you’re going through?” And I just said “listen, I need this, this, and this,” and she did it.

I really have to know I am in a space and place where people do give a damn about me. Don’t just pretend you do; don’t just say you’re gonna show up and then when I need you, don’t. My concern is always “how do I know that the people I love, love me as much as I love them?” There’s no accurate way to measure that; you have to just sort of guess. I don’t want to guess. I want to know. So you have to talk yourself into believing you’re fine and okay. And the group and the family that you have cultivated for yourself — because that’s what these closest friends are, they’re my family — you have to believe that they’re in the right space and you’re in the right hands.

Queer Crip Love Fest: Talking with Queer Disabled Latinx Activist Annie Segarra about Family and Connection

My girlfriend told me she loved me on election night. The rest of that evening is either blurry or so sharply detailed that it actually hurts to recall. But I think back to the moment she said it happily and often. I remember thinking “no matter what else happens, the person I love loves me. I’m not alone in any of this. So now I have to do better.” Since then, I’ve gotten braver: talked back more and shut up less, trumpeted my worth and my friends’ achievements, given my intelligence some teeth. It would have happened anyway, but knowing I have someone to stand next to upped my game a whole lot faster. If I don’t fight my best fight, I’m not just letting myself down — I’m part of a team that will hold me accountable.  And that realization got me thinking about what love looks and feels like for disabled folks in particular.

Know what you get when you Google “disability and love”? Page after page of articles on the “damaging myths” that plague our dating lives; reminders that yes, of course we can have sex; and, best of all, praise for “overcoming stereotypes” by managing to score able-bodied partners. Message received, internet: romantic love (particularly from an able person) is the only kind that counts. It’s our punch card into the “real world,” the validation we need to become worthy of opportunity, the end goal when we see ourselves in movies and TV every last one of those search results. It’s how we’re supposed to secure equal footing with “normal” people. If one of them wants us, we must not be too scary or too much. We must be Good Disabled — the ultimate endorsement.

But what about everything and everyone else we love? It’s not like I languished in woe and despair until my able-bodied girlfriend showed up. Disabled people’s lives are bursting with affirmation, affection, and meaning well beyond the half-baked romance narratives we get stuck with. So say hello to Queer Crip Love Fest, a new series where I talk to disabled queer folks about the love all around them — for partners, family, friends, pets, fictional characters, whatever — and share it with you right here on Autostraddle.

 To start, I caught up with Annie Segarra, a queer disabled Latinx activist and YouTuber from Miami who advocates for diverse media representation, accessibility, and “uplifting intersectional and marginalized narratives.” We talked disability in social justice communities, her relationship with her sister, and what would have happened if Frida Kahlo had the internet.

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Let’s get right to the big stuff. One reason I started Queer Crip Love Fest was to question this assumption that disabled folks aspire to love but never actually experience it, and that “love” always means romance and sex. What are your thoughts on that?

It’s such an exhausting topic, and I haven’t even begun to get into it, really. I feel a little inexperienced with it and I feel inexperienced in general, because I still feel so new, and I feel like there’s a lot socially that I may not understand. There’s a lot that I do understand, but there’s a lot that I don’t, because I’m a disabled baby — like a gayby. I’ve only been out as disabled for about three years.

I didn’t realize that!

I started losing physical ability in mid-2014, almost three years ago. So whenever someone asks me what dating is like as a disabled person, I’m like, “I just became one.” I haven’t had any of that experience yet. I’m sure there are other disabled people who have had disabilities their whole life and have never dated either, but that’s kind of how that question makes me feel. I’m still too young in the disability world to have any feedback on that.

Absolutely, and that’s a great parallel with queer experience.

The spectrum of what’s possible, the spectrum of what queer sex is gonna be like for me, I feel like there’s gotta be ways. I have trouble currently seeing how physical disability will be an obstacle there. But topics like that, dating and disability, I still don’t know yet and so I’m still pretty nervous about it.

I’ve had sex a few times in the past three years, but there wasn’t really a difference because I hadn’t lost as much ability then. So with my ability being what it is at this moment, I don’t know how that works, and I don’t know how queer sex is gonna work. So that’s where I am now — with the whole road ahead of me. I used to be a top, and now I’m like “can my wrists handle it? I don’t know!” We’re gonna find out, I guess.

“Whenever someone asks me what dating is like as a disabled person, I’m like, I just became one.”

Right! And that’s kind of why I wanted to get away from exclusively talking about romantic relationships, and exalting them as the only way to express love. Also, there’s this morbid fascination around disabled people’s sex lives.

That fetishization is triggering as fuck, and I hate it. That was a whole new thing to deal with in becoming disabled. I’m a rape survivor, and a big part of that was that I felt objectified and fetishized for being Latina and indigenous-appearing, and ambiguous. So I already felt fetishized as a woman of color, and for my body shape and size. I hated when people made comments about me having a big bottom and stuff, because it feels bad. And then to add the fetishization of being a wheelchair user on top of that, I was like “fuck, why? Why is the world like this? Holy shit. I can’t catch a break, man.” It just sucks that people are so obsessed with sexuality and disability. And I think it’s because it’s seen as a fetish, and not normalized like able-bodied sexuality is.

So in terms of other kinds of love, the person I really want to talk about is my sister Emily. She’s one year younger than me, she’s my best friend, she’s autistic, and we take care of each other. I just love her energy and being in her presence.

Have you had any of these conversations around queerness with her?

No. My sister is generally not very verbal, so language is not necessarily the way that we communicate, which is a really cool part of our relationship. We have to find other ways. So now it’s really interesting — we swap help with one another. For the majority of my life, I’ve been helping to care for her and have her back on a multitude of things. When we go out together, she wants to be independent, but she has to learn the language to communicate with people. So either she will gesture to me or hand me something that she wants to buy and I’ll do the talking with the cashier, or sometimes she wants to do it herself and I’ll give her the language. Kind of like an interpreter. I’ll give her the words that she needs to communicate with that person.

“Language is not necessarily the way that we communicate, which is a really cool part of our relationship. We have to find other ways. We swap help with one another.”

I’ve never heard that interpreter analogy before, I like it.

I feel like that intensifies our relationship too, that a lot of it is nonverbal communication. ‘Cause that’s very different than how I communicate with anyone else that I know. And we’ve been communicating that way so intimately for our entire lives. She was diagnosed as autistic when she was two and I was three. From that moment, I felt compelled to be like “my sister’s gonna be fine, I have her back. I’m gonna help her and she’s gonna stick by my side no matter what. We’re gonna go to college together, we’re gonna live together, we’re gonna be moms together, we’re gonna do everything together.”

“Nobody’s exempt from ableism — including disabled people. Ableism is in all of us because of the systems that we’re living in. I loved my sister and therefore I understood that she deserved justice and she deserved respect and she deserved the best. But there are times that I probably babied her and she didn’t want to be babied.”

Why do you think you saw it that way?

Because it was already love at first sight. I already loved her, at that age. I’m the oldest, and so I had her to myself for a few years. And the moment I first saw her — there are videos of this — I was like “this is my best friend.” I just instantly felt very connected to her and didn’t want to let her go. So when I found out she was autistic and needed some extra help, then I immediately thought “well yeah, I’m gonna help her.” It made a little advocate out of me.

Has becoming disabled — and an advocate in the community who’s very visible online — changed your relationship with her?

Someone recently asked me if having an autistic sister absolved me of ableism, or if I got into disability politics because of her. And I had to say no, nobody’s exempt from ableism — including disabled people. Ableism is in all of us because of the systems that we’re living in. I loved my sister and therefore I understood that she deserved justice and she deserved respect and she deserved the best. But today I catch myself, because of her oral ability being what it is, there are times that I probably babied her and she didn’t want to be babied. There’s still that weird line of “is it ableism or is it because I love her like my child?” Because a parent of a nondisabled child will still pinch their cheeks when they’re 30 and be like “my baby!” That’s kind of my relationship to my sister, and I’m like “is that ableism or is that ’cause I love her like my own kid?” So I definitely still question myself on that.

Have you reached any resolution, or is it kind of an ongoing conversation?

I try and read her better — watch for her cues a bit more. Because I realized I wasn’t watching that. I feel like I was just treating her like a teddy bear or something, and I understood more that I was maybe thinking more about myself and how I wanted to communicate love, and not necessarily what she wanted to receive.

Sometimes we need to adapt to what other people’s needs are instead of focusing on our own instincts. Like “is this the appropriate time to say the thing that I want to say? Probably not.” Read what that person needs rather than what we feel in that moment. Because honestly, that kind of instinct is more about anxiety. It’s about relieving anxiety from ourselves, but not necessarily giving someone else the space or resources they need to go through whatever they’re going through.

“The way I receive love has changed. That being said, it hasn’t meant me living without love at all. It’s been just transitioning from one way of life to another.”

I think that’s crucial for anyone, especially if you’ve got a disabled person you love in your life or are interacting with us out in the world. Because it hits on lots of sensitive areas: self-determination, independence, being believed when we assert what we want, or even just wanting something, period. Does any of that weigh on you?

I feel like a big part of my experience of transitioning into disability has been isolation. If anything, my isolation has kind of made who I am a little more needy, because I’m already kind of needy in social interactions. That’s how I need to receive affection: physically, hugs and stuff. That is how people would communicate love to me. Usually, I feel like I have to be reaching out. So if someone else is doing it, it feels a whole lot better than me making myself vulnerable all the time.

Isolation and bed rest are lonely and depressing. I kind of felt like I disappeared. Because when you get sick, and you’re stuck in your room and in bed, everybody else’s life just keeps moving forward and you are at a standstill. I don’t want to put disability in a bad light, because so many people are advocating for how disability is no different than any other identity — but then again, I want to differentiate illness and disability that is not illness. Illness and chronic pain is something that I can’t really accept as part of my identity as much as it is something that I have to fight all the time — in comparison, at least, to other disabilities that may not cause pain. There’s language I still need for that and I’m working on it. I don’t know if the day will come or if I’m supposed to, as a disability activist, love my disability. Because I’m like “my disability is my pain.” And I don’t know that I could ever truly say I love my pain.

The pain is exhausting! It does take a lot out of you.

So the way that I express myself in love is the same as before — maybe just heightened, even. But the way I receive love has changed, because I’m usually here in my room. So it’s more expressed to me in a verbal or written way, not necessarily from physical interactions. That being said, it hasn’t meant me living without love at all. It’s a change and it’s an adjustment — just like losing abilities has been an adjustment — which can be tearful and sad because you’re grieving over the change. So while I used to be able to go out and be in the city and be that able-bodied girl, now, no. But the love that I’ve received through people like my sister, who’s one room away, or through the internet and the disability community has been just transitioning from one way of life to another. The internet is amazing.

“A lot of disabled people are very aware of [identity] intersections themselves. Many other activists are not, because most don’t give a shit about disability rights if they’re not disabled. How do we fix that? How do we get other activist communities to include disability rights in their missions?”

The internet’s given the disability community a huge boost.

I mean, we’re very lucky. I think about Frida Kahlo all the time, because she’s like, the intersectional representation of my life: a queer, disabled, feminist Latinx with chronic pain who lived most of her life on bed rest, too. Her disability rights beliefs are questionable, but this was also the ’50s, so I don’t really blame her. She was very progressive for her time. When I see someone like her, specifically, it gives me representation of disability that’s totally doable. She totally did it. She was a queer, brown artist and feminist with chronic pain that kept her in bed and isolated all the time. I’m like, “damn, I struggle with all these same things and I have the internet.” In that time? Oh my god! That’s why she never connected with the disability community, in my opinion, because she was isolated. All she had was herself and the able-bodied people that surrounded her. What magic could have fucking happened if homegirl had the internet? 

So we’re all very lucky to be able to connect with one another, make these connections really fast through the content we’re creating, and push our visibility into the mainstream.

Have you found that to be the case with other communities online?

As disabled activists, our work tends to be incredibly intersectional for several reasons. For one, I think our activism tends to be at the bottom of the list for everybody else. And if we are intersectional people, like being women or nonbinary or queer romantically and sexually, or people of color, a lot of disabled people are very aware of the intersections themselves. Many other activists are not, because most don’t give a shit about disability rights if they’re not disabled. How do we fix that? How do we get other activist communities to include disability rights in their missions? The only solution I can come up with right now is that we have to be the ones reaching out, because they aren’t necessarily going to.

Other activist communities are very aware of one another. Trans rights, gay rights, racial issues and people of color — they’re aware of one another. But all of them lack an awareness of disability rights issues. The question is, is it because they don’t care? is it because we’re not visible enough? Why do we know about their issues but they don’t know about ours? Is that their visibility, or is it that we’re invested in learning? So if we can find that answer, maybe that’s also the answer for them.

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Check back for the next installment of Queer Crip Love Fest, which will be running biweekly beginning in January!