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.


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.

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

Carrie has written 82 articles for us.

7 Comments

  1. Ooof so much of this rings true to me and “who will be my emergency contact” is a question that is in my mind a lot of the time (I still haven’t got an answer that I am totally happy with–but this with the reminder about community has gotten me closer to an answer I think).

  2. I really love this interview, it speaks to something really deep and difficult to talk about.

    This is a different issue of course, but lately I have been giving thought to who I would want by my side were I to give birth, as a trans person. It’s a daunting prospect to me to be in pain and splayed open for the world to see while living an experience considered to be the pinnacle of womanhood. No one from my natal family is suited to the task, and I realized the person I would feel most physically comfortable with is my ex of two years, since she’s already seen me inside and out. It’s an odd feeling, since we don’t talk very often anymore.

  3. i think every relationship i’ve ever had has ended due to an inability to sustain a relationship through the flare ups of illness over time. that in and of itself is such a complicated issue to kind of move through and maintain a secure sense of self throughout. i’ve admittedly not sought enough community for my own sense of self care, but in opening myself up to working with and on behalf of my community has really drawn me into it and given me a lot of unexpected support.

    this is a great and important read. and these feelings are so shared and felt within the community. thanks AGAIN(!) carrie. <3

  4. Oh man, the emergency contact question becomes especially salient to me when I’m single AND in another country (which makes calling my parents not so ideal). Lately I’ve been using a best friend’s number because I can’t really think of anyone else and he knows enough about me to know what to do if shit goes down. But it is a tricky question!

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