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Adrienne Stuart's avatar

When our son of just eight and a half years old died, I was shocked to see who did and did not check in with us. Kinship was an irrelevant predictor. Zero neighbors acknowledged the notable absence of the wheelchair van in our driveway. Nobody asked about his absence, let alone, offered nurture or support. I did receive a card from state administrators who were tired of seeing my number on their caller ID asking for yet another service, exception, or change. This was November of 2022 and perhaps everyone was fatigued with the realities of death. We didn't need reminders that we didn't belong, that we live in a community of isolationists, and that community is hostile to disabled children and completely fine with their extinction. Alas, we received those reminders anyway.

I like the analogy of the sweet potato sprouting, growing, without permission or validation. It is true that the state (in your writing, the federal government) as a body does not care about humans and sees us as disposable, if we can't be mined and exploited. It's also true that the state is made up of humans who choose to sanction or not sanction the whims of despotic tyrants through their actions or inactions. My hope is that we start with care and concern for our neighbors, and like the sprouting of your sweet potato, the care and concern lives on even in inhospitable environments.

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