By: Jackie Kancir, NCSA executive director
These days, it feels impossible to scroll through social media without tripping over someone mentioning Orwell. Who could be immune to allegorical FOMO, so here’s my own take—one that doesn’t involve pigs or totalitarian slogans, but something much simpler: fish and chickens.
My daughter shares about as much in common with a Mensa-level PhD candidate as a fish does with a chicken. Nobody’s handing chickens supreme authority to make decisions for fish just because chickens can bawk while fish cannot.
Society never claims that if only fish grew up in chicken-designed “animal-affirming” environments, they’d suddenly take up roosting and learn to crow at sunrise. There’s no assumption that every fish thrives in the same tank conditions, either. Some need fresh water. Others need salt. Certain fish want solitude, others survive best in schools. The important point: experts don’t consult chickens when they want to understand fish. They study the fish themselves. Wild concept, right?
Rigid, universal rules masquerading as “justice” run counter to the very point of the disability rights movement. These policies draw hard lines and dictate what people can or should do, who they should live with, and where they belong. Person-centered support is the opposite of state-imposed sameness. Policy that erases choice is not justice – it’s discrimination by design.
Society gets it when it comes to orcas, demanding they be given the expanse of the ocean and the company of other orcas. Nevertheless, somehow, when it comes to my human daughter with severe autism, the only socially acceptable answer seems to be a cramped house in a loud, overwhelming city—forced to “integrate” with neurotypical peers who, in a state of more than seven million, rarely acknowledge her and exactly zero have been willing to staff her intense support needs in almost an entire year.
Make it make sense.
If you’re one of the lucky ones for whom the current system works—if you found your wings and soared—fantastic! No one wants to clip your wings. Please, though, don’t stand in the way of families like mine, who are watching our children flounder in a desert of “nothing about us without us (but not her)” support. Our private nighttime tears won’t sustain them forever. We need a flood of research, innovation, and new approaches. We need systems built for fish, not just chickens. We need severe autism to be treated as the public health emergency it is.
No amount of chicken wisdom will ever teach a fish to fly. Reckoning that reality doesn't deduce fish to disposable refuge. It starts a necessary long-overdue conversation about the unintended consequences of systems over-correction and over-reliance on science skewed by selection bias.
The real moral of Orwell's Animal Farm isn't a celebration of barn animals rising up against totalitarian farmers. The alarm being sounded lies in the corruption of revolutionary ideals displayed when the pigs seized power and became as oppressive as the humans they replaced.
Join us for a free webinar with Ashley Kim Weiss Executive Director of Together For Choice. She'll explain how proposed changes to the CMS HCBS Settings Rule could open up more living options for people with disabilities and their families.
If you've ever wondered:
• Why it's so hard to find the right housing for a loved one with disabilities
• Why some housing models aren't available in your state
• What's being done to create more choices
This is your chance to learn about potential changes that could make a real difference.
📅 Wednesday, May 7
⏰ 8:00 - 9:15 PM ET
💬 Includes live Q&A session
