A Guide to Caring for Your Crip
On Friendship
I started writing this on a friend’s couch, 1,105 miles away from home. I finished writing it in an airport. I am lucky if I see my friends a couple of times a year, and I always leave them feeling deeply homesick - for cities I’ve never lived in, for coffee shops I’ve only visited once, for people I only get to squeeze a handful of times a year or have spent no more than a couple hours with in person. When I was young, I struggled to build relationships, platonic or otherwise. Making friends as a chronically ill adult is hard; making friends as a chronically ill kid felt impossible. Friendships started and ended, started and ended. The invitations stopped coming. The texts drifted off. The label of “flaky” earned a spot on permanent rotation. I don’t fault the kids who didn’t know how to be my friend. I was fighting pain, medical trauma, and depression, and I didn’t have the language to describe those things yet. Disability Justice wasn’t a framework that existed in my life, and I didn’t know I could vocalize my needs, let alone how to do so or what those needs were. As my classmates spent nights drinking lukewarm beer out of red solo cups in cornfields, I spent another week in another hospital, hooked to IVs and 24/7 drugs. At the time, I resented them for it. I hated their normalcy, and I wanted them to see and feel my pain. It made friendships impossible.
A couple of years ago, a former friend told me that they didn’t engage with my disability content because they believed that anything they did would be wrong. They didn’t know how to be my friend. In fewer words, I asked too much of the people in my life. Many of the complexities of forming friendships in my childhood have stretched into adulthood. I struggle with vocalizing my needs. I get jealous of supposed “normalcy.” I self isolate when things get bad. And - a reality I’ve learned to accept - a lot of people do not care to engage with disabled folks who are not silent about being disabled. A lot of people are ableist, but more damningly, have no desire to change that. A lot of people shy away from friendships that require effort, and it has made me wonder if I’m too much work more times than I can count.
This month, a friend mailed me a box of soap, paper towels, toilet paper, and cleaning wipes. She wanted to save me a grocery trip. She, seeing the ways in which life has exhausted me, recognized a small way to help and helped. It was a weight lifted off of my shoulders.
Another friend housed me for a week while I rested my joints and my heart in her city. She showed me her New Orleans, and it gave me a brief respite. She asked me how I was, she planned our days around how I was feeling, and she had an ice pack hat in the freezer waiting for me when I landed. Yet another weight lifted off of my shoulders.
It is not difficult to love disabled people. We are not hard to love. We are not too much work.
It is a refrain that I must repeat, over and over. Sometimes I need reminding. If you need it too, here it is: You are not difficult to love. You are worth the work of friendship. You are worth the work of love.
Here are my tips for those of us who love disabled and chronically ill folks. I am imperfect, as we all are, and constantly trying to practice these things more effectively. You don’t have to give the world on a platter. You just have to give intentional love and care.
- Consider access needs when making plans. The first time I noticed this, a friend asked me if I would be able to walk the flights of stairs leading up to their apartment before planning a dinner. Something as simple as a question about stairs stands out in my memory three years later. Check venues for accessibility, ask your people what they need, and be flexible and creative when you can.1
- Ask questions. Don’t shy away from their disability. Don’t sweep it under the rug. Ask how they’re feeling, how their new medications or treatments are working, how their appointments go. Ask if they want to talk about these things or if they would rather be distracted. I have found that so many people in my life fear what they don’t understand. I love being asked about how insulin works in the body or what to do if I have a seizure. Questions demonstrate care and create deeper understanding and intimacy.
- Do the work individually. Most disabled and chronically ill people are professional advocates. We must advocate for ourselves at work, at school, with family, with friends, with strangers, at home, while traveling, with insurance, with medical professionals, and on and on. While many of us - myself included - are passionate about education and enjoy answering questions, reading our book/ article recommendations, following advocates online, and devoting time to learning Disability Justice means more than you may think.
- Uproot your ableism. Continually, daily, as often as you can. Move through the world considering disabled folks at every turn, and let it radicalize the ways in which you speak and act. Be receptive to feedback and room for growth. Remember that we are all on this journey together.
- Help where you can when you can. This does not mean offering unsolicited recommendations like yoga or drinking more water. It means sending a care package or cooking a meal. If you’re nearby, it may mean offering to help with chores or transportation. It could be a phone call or a FaceTime. Sometimes, it’s just sitting together in silence or sending a text to ask if they’ve eaten yet. Get creative.
- Be patient. Listen. Ask rather than assume. Remember that each disabled person is different. We are not a monolith, and no two relationships will ever be identical.
- Lastly, be resilient. Weather the hard days and months and years with us. Do not desert us. Remember in those moments that though you cannot fix things, your existence, the existence of a loved one, can be the closest thing to healing we have.
Relationships - particularly friendships - are rarely given the devotion I feel they deserve. For all my tendencies towards isolation and independence, I am forever homesick for the people I love, scattered across the country. I’m grateful for that ache, because it means that I finally have the connections I so yearned for as a youth. You are worthy of relationships steeped in mutual care and the deeply worthy labor of love.
This also has much broader applications! Consider your queer and trans friends, your friends of color, your friends from different religions, and your fat friends when making plans. Are the spaces safe and comfortable for them? Will they be unintentionally excluded?
I want to end this week’s newsletter not with encouragement to share my words, but instead to continue the hard but necessary work of not turning away from the ethnic cleansing and genocide that is happening in Palestine. To reiterate what the nonprofit Disability Justice organization Project LETS stated, Disability Justice is anti-imperialism, anti-militarism, anti-apartheid, and anti-settler colonization.
If you can, please call your representatives to demand an immediate ceasefire, humanitarian aid, and protection of medical facilities in Palestine. The U.S. Senate can be reached by calling (202) 224-3121.