Community Care and the Best Advice I’ve Gotten

I recently read an important article, “Beyond Self-Care Bubble Baths: A Vision for Community Care.” Abeni Jones’s article isn’t about caring for the health of our communities, about which much has been written, but about how it takes a community to care for each other, and for some of us more than others.

Jones writes here about people with invisible disabilities, including autism, anxiety, depression and other mental illness. There are a lot of people in my life who live with such invisible disabilities, and other disabilities, too, but I want to be clear that this could be any of us. In fact, human beings are social animals, and all of us need others to be fully well.

I’m also reminded that the opposite of “disabled” isn’t “able,” but “currently able” or “temporarily able-bodied,” as many say in the disability community. If we live long enough, most of us will at one time or another become dependent on others.

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This came home for me in a very real way this year. I live with my partner and a roommate. Early this year, first one and then the other had an unexpected, temporarily disabling accident. Both are recovering well now, but for a month or more they were more dependent on others than usual.

To some extent, they could depend on each other – one was using a wheelchair, for example, while the other was able to reach high cabinets with one hand but unable to open jars. Both needed me to take out trash, run across the street for milk, and move the shower chair in and out of our little bathroom. We also depended on my roommate’s partner, and friends who came to us when we couldn’t go to them.

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In the course of all this, we started talking a lot more about spoon theory, and I gained a much more personal understanding of what that means. It’s been in our household discourse for a while – my roommate has a certificate in disability studies, and we’re all intimately familiar with people with mental health concerns – but now it was personal in a new way.

Spoon theory is a term coined by Christine Miserandino and used in the disability community to explain the idea of how people with disabilities frequently have to ration their energy to get through the day in ways that currently abled people do not. For example, when chronic pain stemming from disability interferes with a person’s ability to sleep, this limits the physical energy and mental acuity to perform tasks during the day like bathing, washing dishes, walking to the bus, sitting too long at the computer, etc. As each day progresses, someone with limited spoons has to identify which activities are worth pursuing, and which activities will preclude more important accomplishments later in the day.

Miserandino created this analogy in reference to the limitations created by her Lupus, a condition that is not always visible to the currently abled public. As such, it is also a popular term of art in the community of people with invisible disabilities.

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Saying “I don’t have spoons for that” when you are not a person with disabilities is considered disrespectful. I have also inquired and been told by some in the disability community that using this specific set of expressions in reference to temporary disability due to injury or surgery is not appropriate, and I respect that.

What I will say is that I have had a brief glimpse into how chronic pain, insomnia, restricted mobility and other physical limitations sap the energy out of a person’s day. He may not be able to focus through a whole half-hour television show, or even maintain coherent conversation over dinner. She may struggle with the limitations to her social interactions and mental health imposed by an inability to leave the house for weeks at a time. They may struggle with the emotional consequences of being dependent on others for basic functions like cooking, loading the dishwasher, mopping up spilled juice, or cleaning the cat litter.

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It was also in the course of all of this that my partner said something important, something that’s missing from Jones’s excellent article on community care.

I kept asking, “What do you need?” and, “How can I help?”

“That’s the wrong question,” he kept saying.

Between the painkillers and the pain and the inability to sleep more than three hours at a time, he couldn’t articulate what he meant, which was that he couldn’t articulate what he needed. He often didn’t even know what he needed.

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When he was finally able to explain, I recognized what he was describing from my own experience of struggling to maintain my mental health through uneven employment in recent years. Sometimes it’s when you most need help that identifying, explaining and asking for what you need isn’t within your capacity.

This happens to me when I’m losing a job, for example. Well-meaning friends say, “I’m here, whatever you need,” but the cognitive and emotional burden of deciding what I need, and from whom, and then finding the words and the courage to ask…. It’s too much. Instead, I have exactly the energy to say, “Sure, Netflix, I’d love to watch another.”

Other times, especially when I’ve begun to really grapple honestly with the depth of my depression, I worry about placing too much of a burden on my network. You might ask, “How are you? What can I do?” and I might be thinking, If I’m honest here, I’ll become a burden and she’ll start to avoid me, so I’ll say, “Oh, you know. I’ll be fine.”

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I’ve been working on a chapter for my memoir about death, mourning and grief, and how my Jordanian neighbors’ relationship with death helped me understand the concept of “abiding” or “companioning” that ministers sometimes talk about.

When my mother’s best friend suddenly lost her son, tragically young, Mom thought about how much she hates funerals. “But,” she told me, “somebody has to wash dishes and scrub toilets and make sure there’s food as people come in and out. I can do that.”

Though I wasn’t able to be there, I’m confident my mother provided emotional support, too, but driving her best friend where she needed to be was a concrete first step towards making herself available for the more difficult stuff.

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So this is becoming my new strategy. I’m trying to resist the urge to say, “Can I help?” or “What can I do to help?” Instead, I’m trying to anticipate what that help might look like.

When a friend posted on Facebook about a really terrible day, I asked, “Do you want to get a drink and talk about it? Or not talk about it?” It made it easier, I hope, for her to say, “Sure.”

When my roommate was finally able to walk again but with a cane and still not back to work, a mutual friend asked me about getting together. “Would you mind if I bring my roommate and my boyfriend with the car and we go somewhere cheap?” Later, to my roommate, I apologized for dictating her social life without asking. “Not at all!” she said. “I need all the help I can get right now!”

It’s harder at a distance, when your friends are scattered across the globe but their bad days are right in front of you on Facebook. Sometimes there’s a resource I know of, an introduction I can make. Sometimes I can offer to give notes on someone’s resume and cover letter. Often I can say, “I’m sorry things are bad right now, but I really appreciate when you post X about Z on Facebook. It’s hard but you’re fighting the good fight.”

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It can be hard to anticipate what your friend really needs, and sometimes “I’m here if you need me” is the best you can do. Sometimes, though, “Let me bring takeout from our favorite place and wash your dishes for you” is much better, because all your friend has to say is, “I mean, I guess, if you want to….”

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