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Kira Stoops's avatar

As a formerly high-achieving, now low-functioning/low-income disabled person, I've been on the end of "contributing or benefitting" that I never expected to be.

And after sitting in that uncomfortableness for some time, I think it's the wrong framing: contributing or benefitting.

Giver or taker.

The former, worthy, good and generous.

The latter, needy, unfortunate, and groveling.

In my "successful" days, I was benefitting. Benefitting from health and all the pretty thin firm young privilege that comes with it. Benefitting from "earning" jobs and kind gestures. Benefitting from the simple ability to eat convenient food, drive a beater car, walk wherever I wanted, work extra to save for trips and nice skincare and organic food.

In my disabled days, I'm...benefitting? I've been granted this newsletter subscription (thank you, thank you). I've gotten the blue badge that lets me park closer. My health insurance deductible is adjusted down in accordance with my low income. Some outstanding medical bills have been forgiven. My parents pay for my laundry to be taken away and returned folded.

Who gives, who takes? I'm too sick to work much, but I have the time and patience and breadth and empathy to hear my close friends' laments in a way I never did before. For them, I'm a safe space. I hope to help the swelling numbers of long haulers coming up on one of my diseases, ME/CFS.

I've given back my use of the trails, my pounding on the pavement, my pull on the gas stations, my patronage of processed food because disability forced me to. I didn't—couldn't—have a kid, gave that back to the planet in the form of just a few-fewer people needing resources, I guess.

We all give, and we all take, and it's so hard to see how. Disability is the only minority in which you can find yourself a part of in an instant. What would you want for yourself if you were disabled? If that thought chaps—"I would never"—let me remind you, no one chooses to be. And while many parents choose to be parents, many don't.

Most of my help comes from my family and friends, who "generously give" to make my life possible. But I wish they didn't HAVE to, because of the dearth of resources available to me. It's less of a gift to me and to them, and more of a survival tactic and act of loyalty—I become dependent, because what else can I do? What else can they do, as my family and friends? How much of the giving is "generous", and how much is resentful, desperate, or gladly given but hardly had?

This is where I think safety nets really, really matter.

Because people who *receive* gifts don't feel like burdens. People who NEED gifts do.

When a gift fulfills a WANT, it's a delight, a grace, a connection, a pampering.

When a gift fulfills a NEED, it's an emergency stopgap for a failure of society.

For me, this newsletter is a gift.

The break on medical bills is more like social justice.

Gifts should come from community.

Justice should come from society.

I don't love a system where parents' only recourse is the "kindness of community". I want the village raising a child to be a lovely thing, but I know it turns into a popularity contest. It turns into conformity and pleasing to stay in good graces. It turns into people who can't afford to give giving too much, and sneering from the judgy and privileged.

Reliance on community, when it means survival, means prioritizing your place in that community above all else. To be helped can change your dynamic in that community to the help-ee. The pitied. The inspirational one. The better-get-better one. The oh you again? We already helped. You always need help. Now, you're a mooch.

Justice—real justice—doesn't make these judgements. Communities do.

It's a glitch of individualistic mindset to think we'll all find a way within this system to get all of our needs met, no matter our circumstances. But I hope we can scooch our current system closer to meeting more people's needs, more of the time.

I see that happening in legislation, if anywhere. If not there, in company and corporate policies, from employee pressure. Community as a survival tactic is a temporary shelter, and these efforts should be saluted...but I hope they don't have to be permanent.

I just can't see another person dependent on a GoFundMe for medical care.

Because gifts should feel like gifts, not life rings. Giving should come from generosity and abundance, not desperation and despair.

So that when a neighbor does step in, it can truly feel like a gift—instead of, "am I going to drown saving this drowning person?"

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Katydid13's avatar

I think one big problem is not just empathy, it’s that there is so little slack in our systems. I am the auntie (honorary) who picks up kids from school and babysits them such. And I’m happy to jump in. But there also isn’t much space for reciprocation. Like before I was partnered finding someone to take me home from like dental procedure where they require someone to bring you home was hard. Because of course my friends who are parents (most of them) don’t have the leave to do that. I managed to break my elbow this summer and my partner had to go to office when I wasn’t really in a place to be alone yet. It took some juggling to find someone to sit with me. And there is only so much slack that non-parents can pick up at work before it grinds them down. All of this would be easier if we weren’t all stretched to the breaking point. It’s systems.

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