Tapping into community support

The popularity contest of survival in the modern world

If you follow Humans of New York on Instagram, you’ve been following along with the story of Stephanie. They’ve raised over $2.5 million dollars to pay for her to get the caregiving support she needs. Any money left in the trust at her death will go to a children’s charity.

It’s easy to celebrate that Stephanie will now be able to pay for the care she needs. It also makes us think about how not all of us are able to get the sort of attention that leads to wildly successful fundraisers.

You’ve probably seen plenty of GoFundMes on social media. Before they went online, they took the form of coin collections on the counters of local shops and spaghetti dinners at the community center.

There are a lot of fundraisers, but the number of fundraisers — online and off — pales in comparison to the full number of people who are unable to pay for care.

Most of these fundraiers assumes “care” means medical bills and maybe things like rent and groceries. Stephanie’s fundraiser is unusual in the way that it’s counting the full cost of care, rather than assuming someone will be providing her with anything not done by a doctor — from preparing meals to things that would require a nursing license if not done by a family member — as a volunteer.

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Community support doesn’t always mean opening your wallet. In fact, most of the support we get is more hands on.

It’s neighbors taking in the kids for months while their mom goes through chemo. It’s coworkers organizing a meal train. It’s the temple sending visitors each week so you can get out of the house.

I think of Christopher Ingraham hiring someone to plow his driveway and finding his new neighbors leaving casseroles on his step. In his new small town, you only hire someone to clear the snow if someone in your family is seriously ill.

That sort of support is easier to get for care that has a beginning and end. Car accidents, surgery and recovery, and critical illnesses all rally communities.

The slow slide and long-term needs of degenerative conditions and lifelong disability fail to get meaningful community support in the same way. It makes sense, but it doesn’t make it any easier on the people who are feeling left behind.

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Loree Erickson is famous in the disability justice world for having the longest running care collective.

Even if she could afford to hire PCAs, doing so opens her home to the scrutiny of social workers who get to decide what she needs and what she deserves. Plus, Erickson knew she had a lot to offer as a person and wanted care that went both ways. She wanted to be interdependent, not dependent. Erickson explains:

For the past 20 years, I have been meeting all of my daily care needs by means of a care collective, made up of lovely people from various communities of which I am a part. My care needs include things like getting out of bed, going to the bathroom, organizing my sparkly things, taking care of my sweet and strange cat, making food, and so on.

Erickson just launched a website to help people build their own care collectives, which I’m very excited about. There are forums so you can meet other people with care collectives and see the many forms they can take.

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What amount of help would be worth the risk of asking for it and the effort of organizing it?

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Thinking about care collectives makes me think of care mapping and transformative justice pods.

Both help us realize that we are part of communities and interdependent relationships that can be deepened, which is especially helpful when it feels like you have no one you could ask for help and nothing to offer.

My experience talking to members of time banks has taught me how everyone has something to offer. Not just in a hazy ‘all life is valuable’ sort of way, but in an ‘everyone has something to offer that other people are willing to trade their own hourly labor for it’ sort of way.

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In Care Work, Leah Lakshmi Piepzna-Samarasinha writes about care collectives and acknowledges that it’s not the sort of thing that’s possible for everyone. It requires a lot of organizing, a tolerance for adventure and willingness to view strangers as future friends, and a certain amount of charisma.

In the book it doesn’t read as a criticism, it’s a simple acknowledgement of reality.

There’s no one solution to providing people with care. There doesn’t need to be. What works is what works for you.

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If you’re thinking that if you need something done right you need to do it yourself (a sentiment that life experience certainly leads us to believe!) you might want to read this.

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Our focus centers on our unmet needs, because that’s the issue that requires addressing.

But let’s pause for a moment to acknowledge all the needs you have figured out how to meet, despite the challenges you’ve faced. There are so many hurdles that you’ve gotten over — or around.

Take a minute to recognize your own brilliant solutions and your own expertise.

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The asset-based community development (ABCD) model speaks to me because, to paraphrase Cormac Russell, it’s about walking alongside people to support them, reducing their need for services and enhancing people's own abilities.

ABCD isn’t a tool to design nonprofits and social services. It’s a model that describes acknowledging what people are already doing to take care of what they need and having experts work remove some of the things that are making it harder.

Often this mean experts eliminating hurdles other experts created.

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So, that’s my story on community support for the charismatic. Maybe one of these days I’ll figure out community support for curmudgeons. Although, curmudgeons have a certain charm, too.