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Dahlia Daos's avatar

Reflecting on the never ending attempts to fix my dysfunction. To make myself functional, to get rid of the dys and replace with superhuman. Because that is what it would take. To be superhuman. And I was, inconsistently, and then paid dearly for both success and failure.

To say disabled has been anathema for me. Not once did I stop to ask myself, maybe I struggle so much because I simply cannot. But when you spend a lifetime doing impossible things, it becomes a personal failure you cannot do the impossible thing every single day, rinse and repeat, with no rest or end in sight, no support, no understanding, no, no, no.

No is a word I am also learning to embrace. No. No, I do not want to do that again.

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Woodrow Swancutt's avatar

You bring up the tough truth: getting labeled as disabled isn’t just about identity or self-acceptance - it can be the line between getting Medicaid, Social Security, and basic survival, or getting nothing. That’s real, and it’s unfair that a single word or a diagnosis - even when it’s incomplete or boxed-in - holds so much power over our options.

Let’s call it what it is: the system is set up to force people to jump through hoops just to get their needs met. You shouldn’t have to fit someone else’s definition of “disabled” to access what you need to live, but right now, in most places, you do. And with this federal administration, cutting through that red tape is getting tougher, not easier.

The fight for change will keep going, and yeah - it takes folks like you, Sher, to push it forward. But until the system catches up, people have to do what they have to do. Labels aren’t freedom, but sometimes they’re the only ticket to the basics. And if that’s the game, nobody should blame you for playing it, even as you work to rewrite the rules. Change is slow, but speaking the truth about this stuff is always a step toward making it happen.

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