“Unspooling” by Nicole Lee Schroeder
Disabled love is a different kind of love. It’s neither born from blood ties nor proximity. It doesn’t hold to the same rules as romantic, platonic, or familial love. It comes from a shared desire for a better world. It sustains us in moments when we don’t love ourselves, and it offers a tether to cling to as we cycle through grief and readjustment. It’s not performative or draining. These days, I weave disabled love into my life like a practiced artisan. I spin threads of love from late-night phone calls, Zoom get-togethers, and disparate Twitter threads. Hand over hand, I wind up scraps of wisdom from those who’ve come before me. I weave line after line, watching as patterns spring into existence, crafted from the instructions they have patiently and lovingly written down. I tamp down row after row, interlacing the love I have for me, the love I have for you, the love I have for us. The craft itself, and the result, is a thing of beauty.
In the Before Times (before I knew I was disabled, before I knew there was a community out there, before I knew I belonged) I had a cookie-cutter view of love. As a child I knew there was love in the way my mom snuggled me, laying my head in her lap with tender hands brushing my hair. I grew to learn that there was love in the extra jobs my dad took on to make sure we had what we needed. As a teen, I found love in small-town connections and seemingly everlasting friendships. I thought my life was full of love, even brimming with it. I built friendships and maintained family connections. I played to all the normative standards of reciprocity.
I thought I had woven this gorgeous tapestry together with friends and family members connected in a tight-knit weave. My tapestry’s warp ( the long, vertical threads stretched across the loom) was made up of the threads of my love, and its weft (the sideways, horizontal threads locking everything into place) was made up of the love that others reflected back to me. I thought I was weaving something stable and secure. I thought I was churning out yards of doth from my threads.
But then I got sick. And I got sicker. And I started to cancel plans. Friends and family members witnessed my rapid deterioration, but no one outside my immediate family knew how bad it was. I didn’t tell them because I knew they didn’t want to know. I wasn’t healthy enough to have fun. I was frustrated and anxious as I tried to make sense of a body that seemed to defy my every desire for normalcy.
A tapestry can’t hold when warp and weft go at the same time. One thread snapping makes little difference in a woven piece, but when multiple threads splinter, the piece reverts to a shapeless tangle. My warp threads were straining under the pressures of internalized ableism. I had very little love for my failing body. I needed the weft to hold everything together until I could straighten out my warp. But those threads began to snap, one after another, as loved ones distanced themselves from me. I had banked on the idea that those threads were wrought of love. I thought they couldn’t snap, but they did. I watched as my whole tapestry unraveled before me.
I didn’t know what to do with the tangle of threads I was left with. I had scraps of love at my disposal, but everything seemed a mess. My warp was all wrong. I didn’t know how to love myself as I watched my body decline. I grew up denying my body the love it needed, convinced by doctors and teachers that I was “fine” and had to just “toughen up.” I had no love for my limitations. I wanted a body that could run on very little and churn out constant streams of productivity. I wanted to be independent, so I starved myself of rest. But a body can’t survive without rest, self-love, and community support. Eventually my symptoms accelerated so rapidly that doctors were forced to interrogate what was wrong. At age nineteen I was finally diagnosed with hypermobile Ehlers-Danlos syndrome. EDS is a genetic condition that affects your collagen production. Because I have weak collagen, my joints, blood vessels, and skin are very fragile. While symptoms are diverse for EDSers, in my case, EDS looks like frequent dislocations and subluxations (partial dislocations), chronic pain, weak muscles, and poor blood flow. Like a thread spun too loosely, my joints and bones tend to split away from one another, even under minimal pressure.
My diagnosis compromised every vision I had of my future. Motherhood? Gone. Living abroad? Gone. Working a political career? Gone. Having a day without pain? Gone. All these threads that I had planned to place in my tapestry fell from my grasp. I felt like I had nothing left to weave. Instead of giving me the tools I needed to craft something new, doctors gave me a lengthy to-do list. I’d have to put off the tapestry until I could set up appointments with cardiology, neurology, orthopedics, gastroenterology, optometry, pain management, and physical therapy. I’d have to screen for the life-threatening comorbidities. No sense weaving something together, they claimed, if I were dying. There was an endless list of medications, supplements, dietary changes, physical therapy plans, and other “habits” to change before I could even think of weaving again.
In the months following my diagnosis I looked for threads of love in all the wrong places. I looked through countless medical journals and patient community posts hoping for a cure. I looked at my body through a medical lens, thinking, “What can I fix?” and “How much can I fix?” A few months after my diagnosis, I went to a meeting of the 2013 Ehlers-Danlos National Foundation Conference. I was excited to meet other disabled people who shared my “rare” condition. Doctors had told me time and time again that EDS was so rare (back then they estimated 1/20,000) that I’d likely never meet another patient outside my family unless I sought them out (if only I had known about Twitter). I thought I’d find disabled people who were adapting—people I could learn from. I didn’t know how to weave a life together anymore, but I thought if I could just find one other person who was doing it,maybe I could simply mirror them.
I didn’t find threads of love at that conference. Medical professionals with tenuous and exploitative patient connections dominated the conversation. I wanted so badly to find community, but this was not a space built from love or joy. People were held together by fear, desperation, and anger. I attended “community support” sessions for my age group and listened to peers share stories reeking of discrimination. People described how they were forced to homeschool or drop out of college. Others recounted how they couldn’t find steady employment, and many had been fired over accommodations. I entered the room hoping I could find one thread to hold on to. I spiraled as I listened to others say that they had no friends anymore, that their romantic partners had left them, that no one was willing to stick around. If none of these people had found threads of love, how was I going to? People seemed resigned, but I was upset. Why weren’t they angry? Didn’t they want to talk about how unfair this was? I walked into the room hoping to borrow threads, or to learn to spin new ones. But the people in that room were clutching their own torn pieces, trying to repair holes in moth-bitten cloth. They had no threads to share.
The ironic thing is that I already knew how to extend disabled love, I just didn’t have the right framing for it. My mother and brother were diagnosed alongside me that December. Our household was already held together by disabled love. Every time we dimmed the lights or spoke in low voices, my family showed love for those with migraines. When my brother tiptoed down the stairs in the afternoon to grab a snack, avoiding all the squeaky spots, he left trails of love behind him. He would gently shut cabinet doors and creep back upstairs as I dozed on the living room couch, a napping spot that seemed to have a special kind of magic for aching joints. When my mom honed herself into a weapon at every new medical appointment, all sharp edges and hardened eyes, she was teaching me a new form of love. I had plenty of instances of disabled love in my life, I just hadn’t honed my self-love or awareness yet, so I didn’t see them for what they were.
The threads I was weaving together back then felt inadequate. I was spinning threads of self-love that seemed far too thin to hold and far too dull to make anything beautiful. I was taking my medications, doing physical therapy, using mobility aids, and slowing down. I was beginning to gather reserves I could spin, but I was still jealous. Non-disabled friends were weaving their tapestries together — dating, making career plans, building lasting friendships, going on spontaneous vacations. I was endlessly jealous of the threads my friends seemed to have, spun together from spur-of-the-moment trips, all-nighters in the library, and drinking parties on the weekends. My nondisabled friends seemed to have piles and piles of threads — colorful, bright, distinct — made of spontaneity and freedom. I wanted threads like that, too.
I wanted more. I had no idea what I was doing or what I needed, but I knew that I wanted a community. I wanted a space to weave love back into my life. At first, I tried to bring together disabled people on my university campus. I grew heartsick week after week when I was the only student who appeared for disability awareness meetings. Sitting in the ALANA Cultural Center at Colgate University, waiting endlessly because “maybe they’re just late” became a monthly occurrence. It felt like a sign that I wasn’t supposed to love this part of myself, and a reminder that seemingly no one else my age did.
Luckily, instead of shutting down, I got angry. I scoured my university looking for disabled love. I found scraps in the library, reading works by disabled scholars Paul Longmore and Tobin Siebers. I found fragments in the memoirs I read and the theories I parsed through and the histories of disability rights I pored over. I found so many people fiercely demanding equality, justice, and inclusion. There were blogs, zines, and lnstagram posts brimming with disabled love. I realized that even if I didn’t have disabled community nearby, it was out there. I just needed to look for the threads that disabled people were already putting out into the world.
Love came in the form of Anneliese, the first (and only) disabled person who ever showed up to a disability awareness student meeting. Ahead of me by a few years, she was already a fierce advocate for disability rights. We shared lengthy emails bemoaning our struggles to secure meaningful accommodations. We drafted policy briefs to improve campus transportation, housing, and classroom and campus environments. We debated how to best attack discriminatory policies.
Anneliese taught me that some of the thinnest threads in the world, like silk, make some of the strongest materials. She spun beautiful threads, in tones I had never seen before. A quicksilver gray thread — a reminder that work can always be done lying down. An opaque fishing line-encouragement to try to build access even when that labor goes ignored by others. Together we spun. Threads to ground us, threads to acknowledge the harms done to disabled individuals who came before us, threads to voice current harms, threads to encourage others to keep fighting.
Those early attempts at activism sustained me and reminded me that I, too, belong in this world. In an environment where disabled people are rarely accepted, and even more rarely valued, having disabled love in my life at school was vital. Anneliese broke every rule I had mistakenly held myself to. She taught me to ask for what I needed, to be unashamed of defying nondisabled norms and respectability politics, and to fight for my inclusion. Our threads did little to change the tapestry of our institution, but I graduated knowing how to spin glittery, silken, undamageable threads.
Disabled love is spun from respect and mutuality, not reciprocity. Disabled love isn’t about keeping score or competing to give the most. Disabled love doesn’t demand consistency or perfection. Disabled love asks us to love ourselves first and foremost. It reminds us that we are not a healthy community if we push one another to give beyond our individual means. Disabled love tells us it’s okay to cancel plans. Unlike nondisabled friends, my disabled friends never stop inviting me or rescheduling. They honor my boundaries just the same as I honor theirs, because disabled love is spun from honesty.
Disabled people spin threads out of nothingness. We hand the shuttle back and forth when we spend time together, build space for one another, and find value in one another’s experiences. We map out new patterns, and make sure that every thread finds its own space to shine when we build and sustain access for one another. We dig through our reserves and share the threads we’ve spooled. When doctors take tools away from people, we show up with polished shuttles and shed sticks. When newly disabled people say that they have nothing to weave, we show them our finished works and remind them that there is more to this life than darkness. We reach out to those new to the community, those with shakily spun threads. Hand in hand, we twist our own materials to shore up weaker threads until each and every one of us can spin our own unbreakable strands. We spin skein after skein with care, curiosity, and understanding. Together, we weave rows of hope and laughter and joy to balance out those of frustration and despair. We borrow with care, and we share with generosity. We spin and weave and tamp down row after row of love when we build community together.
Disabled people know how to love like no others. We show our adoration for one another when we crack morbid jokes. We make one another laugh over very real, terrifying shit. We pay homage to one another by simply standing witness-to highs and lows, to cycles of grief and mourning and celebration. We find reverence in the stories shared with us, stories that teach us how to navigate, how to fight, how to resist. We say “I love you” in a million ways. When we murmur it at the end of phone calls, hoping that the simple sentiment resonates. When we scribble it all over medical notes as we help one another compile records, track changes, and figure out how to secure what we need despite a failing medical system. When we proclaim it, loudly, when we protest and make our stories public.
Disabled community teaches us how to weave love in a way that’s hard to put into words. We weave to sustain ourselves, one another, and our shared histories. We send one another threads across time and space. We ship them off in envelopes with letters and postcards. We trade them during Zoom calls where we do absolutely nothing together. We gift them over long phone calls peppered with silence because quietude is love, too. We unabashedly take them when we tell guests to leave already because it’s nap time. And we leave them behind in heaps when we perform care work.
The threads whisper that we are worth everything. That it is worth rebuilding the world so that we have a place in its future. They remind us that our lives have value, even when the world disagrees. Row after row, the tapestry tells us that our lives are worth living, even when we start to have our doubts. It claims that undoubtedly, we are enough, no matter our needs. The full picture tells us that we are beloved. Perhaps our tapestries are made up of thinner threads, maybe they don’t follow the patterns we expected or the color schemes we had hoped for. Nonetheless they are woven together from stronger stuff than we could have imagined. In the end, the final image is stunning.