#idk i just. have a lot of feelings about mutual aid and what it rlly means

[palms-upturned]

I sometimes get sad when I see articles/posts about “how to do x when you’re disabled/chronically ill.” I don’t begrudge ppl for those kinds of posts, mind u, it’s touching how spoonies take time and energy out of their day to help each other and share resources. But I get sad thinking about how the ideal way to deal with having to wash dishes during a pain flareup, or cooking when you’re feeling sick and tired, etc is: have someone else help you/do it for you.

When I was really, really sick and anemic in 2020, I could not physically bathe myself for a while. And when I finally could, a shower would take all the strength I had for the entire day. I sort of just… lived with that. Getting a shower stool helped with reducing the risk of fainting and generally with my stamina, but it was still exhausting every time for a long time. There are ways someone can make it a little easier: the stool, using a scrubber with a handle so you can bathe without moving as much or bending over, taking lukewarm showers rather than hot ones, etc. There are also ways you can get clean when you can’t shower, like sink baths and dry shampoo. But the truth is that I would have been able to bathe more often and generally have more strength throughout the day if someone had helped me.

I didn’t live alone at the time, but I didn’t have the kind of relationship with the people living with me where I would have been able to ask for something like a sponge bath without feeling embarrassed and vulnerable. And no one thought of these things without my asking for it, because the truth is we don’t really know how to take care of our sick. Not individually, and not as a community.

Disability and illness are so isolating. It’s difficult to keep up relationships when you aren’t able to go out and see people, or don’t have the energy for long conversations, or just feel awkward and embarrassed when the answer to “how are you?” is always “bad.” Not to mention how financially draining it is to be disabled/sick. How hard is it for us to keep up friendships when we aren’t able to invite friends out and say, “it’s on me?” Or can’t offer a ride? Or can’t financially or even physically afford to leave the house? Without close friends or neighbors to check in on us, and without being able to afford home care professionals, or even be able to trust said professionals to always treat us with dignity and kindness, who does that leave to care for us when we’re not able to care for ourselves? And what happens if, even when we have lots of close friends nearby, they don’t know how to care for sick people, or don’t feel inclined to bc it’s not their business or their problem?

We end up being almost entirely dependent on whoever lives with us for help (if anyone does at all) rather than having a real support network or community. Isolation not only adds a layer of pain, but also vulnerability. Independence means wearing ourselves to the bone or emptying out wallets just to be able to eat a decent meal. Depending on family or a spouse/partner means being almost entirely at their mercy, putting us at high risk of being abused or at the very least casually dehumanized. People consider it burdensome to have to help someone with their cooking, or housework, or personal grooming, or remembering their medications, or any other care needs. So the burden falls on us to pass along tips on what to do when you’re having a migraine attack and can barely even stand to keep your eyes open, but you still have to make yourself something to eat. Because that’s the reality we live with, and that we’ve learned to make do with. And because those of us who understand each other’s needs best and most wish we could do things to help each other are the ones who don’t have money or strength to spare.

When you see resource posts about how to cope with disability, by all means share them, but I hope you will also consider it a reminder to check up on your friends, family, neighbors, coworkers, etc and see if there are any needs in your little circle that you can help meet. Or maybe research some things like how to help a sick person bathe, or what foods are good to eat when you’re dealing with certain symptoms, or how to make your home wheelchair accessible. Since we all get sick and all of us at some point will most likely become disabled in some way, you’re going to need this information at some point in your life anyway. Why not now? And why not use it to take care of people in your sphere of influence?

When I hurt my back recently, a coworker drove all the way to my house to drop off freshly picked cherry tomatoes from her garden just to give me something nice to eat and make me feel cared for. Another coworker spent their ten minute break driving me from my workplace to a restaurant in the same complex just to spare me a five minute walk when I was tired and aching. When I was institutionalized for suicidal thoughts and the hospital held me for 30 hours past when I was told I would be released, my whole family drove to come demand my release, and I got to go home. When I was sick and my bank account was overdrawn, friends occasionally sent me meals. Just today, a friend bought me a pill organizer to help me be more regular with my medication routine. No man is an island. We’ve got to do this together.