On the days my body is completely immobilized by pain, I wonder if my partner is going to leave me. He has given me no evidence that he plans to, but in my most vulnerable moments, I subconsciously assume the clock on loving a disabled person has to run out at some point. Time and time again, as pain vibrates through my body making it difficult to speak, I whisper to him, “Do you love me? It’s okay if you need to walk away. I know there's a limit.” He chants quiet choruses of “I love you. I am here.”
What I experience in these moments might seem like self-loathing, but it is the effect of structural ableism. Talila Lewis, an attorney, educator and organizer, defines ableism as “a system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity.” It is impossible not to internalize these ideas, and it is a constant practice to uproot them. In terms of pillow talk with my partner, ableism’s loudest message has been that my disability makes me unlovable.
I grew up without a diagnosis, but I have been chronically ill and in pain since I can remember. Lacking a label meant I had nowhere to look for role models, romantic or otherwise. Instead, I mainlined romantic comedies. With an often invisible chronic illness and privilege in almost all other areas of my life, I fantasized that my life could be like the women in these movies. The arcs are usually predictable — crisis, conflict, resolution, wedding bells, sunset. Except for one story line: characters who’ve trapped their partners in a burdensome dynamic of care. They inevitably heroically die so their abled partner can finally live a fulfilled life of freedom; think “Me Before You” or “A Walk to Remember.”
In real life, my experiences were painful, too. I earned the nickname “crip” from my high school peers for my collection of undiagnosed (and presumably exaggerated) symptoms. My only encounters with adolescent nudity were in sterile doctors’ offices. With a distinct absence of suitors, I could not imagine that I was sexually desirable to others. But I also learned to navigate medical systems that never intended to serve me and began to understand the ways my Whiteness, class privilege and appearance afforded me a degree of access never available to my disabled peers.
In college, my decade-long search concluded with a diagnosis. A few months later, I began to date in earnest for the first time. An explanation in hand, I thought I could make a case for being lovable. As a straight-sized, able-passing White woman, I could secure dates through apps relatively easily. It was in person that things fell apart. The first time I disclosed my chronic illness, I watched the blood drain from my date’s face. He explained that his last girlfriend had the same genetic disorder, and he had broken up with her over it. Dating someone like me was too much, but he was still willing to sleep with me. It was my worst fear realized.
In my early 20s, I committed myself to the Olympic sport of dating, hoping my gold medal would be a heteronormative happily ever after. I averaged a date a week, and as I met potential partners for coffees, cocktails and meals, my formative college rejection played on a loop in my mind. I learned to hide my disability from my dates and wondered if I could trap someone into my own version of the relationships I admired in movies. Success was convincing an able-bodied partner to love me.
At the same time, I was combing the Internet for dating advice for the chronically ill. Few articles existed, even fewer written by those with lived experience. They all lamented the same thing — dating, an already vulnerable and awkward ritual, is more difficult for disabled people, specifically women, and most acutely for Black women. The worse your disability, the more likely you are to experience intimate partner violence or abuse and the less likely you are to marry. The sparse advice was exclusively focused on how to soften our disabilities and squeeze into social norms. It was our job to ensure our (able) partners did not feel like caretakers. It was clear that any repercussions of disability in a relationship were wholly the responsibility and fault of the disabled person, not our social structures.
Thankfully, in my mid-20s, I discovered my disabled community. I started to learn about concepts like disability justice and ableism and models of disability, mostly from BIPOC (Black, Indigenous and people of color) disabled women and femmes. These are the women who taught me that love can be a revolutionary political force. Ableism is interconnected and inseparable from racism, sexism, classism, colonialism and capitalism. Much of the pioneering analysis has been done by those at the intersection of these identities — a shortlist includes Audre Lorde, Mia Mingus, Leah Lakshmi Piepzna-Samarasinha, Stacey Milbern, Keah Brown, Imani Barabrin and Patty Berne.
I was finally able to name myself as disabled, not out of necessity, but out of pride. I saw how my own ableism had conditioned me to solely search for an able-bodied partner. I learned the magic inherent in my disability and identified all of the skills I had mastered navigating this world as someone who was never meant to survive. I was finally able to imagine new ways of living, beyond the realities ableism had sold me. I started to understand the ways my internalized ableism interacted with my socialized prejudices of racism, anti-queer and anti-fat prejudices; none of these identities could be isolated, singular experiences. Yet finding love still seemed impossible. I allowed myself to believe that if I could find it, it would give me the contradictory evidence I needed to believe I was worthy.
Healing, as we all must discover again and again, is not linear. I met and fell in love with my now-partner during the pandemic. No longer bracing myself for the perfect moment, I proudly announced my disability on our second video date. He didn’t run. In fact, at every turn, he rebuked my expectations of relationships. He thoughtfully learned about my access needs and the realities of my condition. He was quick to purchase accommodations and duplicates of my over-the-counter medications for his apartment. He slowly offered and learned to do more for me, and viewed his physical care as reciprocity, not responsibility. He used a consent-based approach and centered my dignity at every turn. Like every privilege-carrying person, he made mistakes. When I sought to educate or correct him, he responded with curiosity.
At some point, between surgeries and late-night pain flares, I realized that the able-bodied script for love never told me I could have a partner who creates deep access intimacy, who knows the right setting on my heating pad, who sorts my meds every Sunday night, who cuts my food when my hands are too tired (but never without asking first).
I also realized that love alone was never going to save me. The nagging voice that tells me my disability makes me unworthy is still there; it will survive as long as ableism does. Learning to be unapologetically disabled is an ongoing fight with my socialization and an act of imagination. As author adrienne maree brown teaches us, what we give attention to grows, and I had been tending the wrong thing. Re-creating ableist love was never going to liberate me; radical crip love will.