By Ariana Waldruff
New York has a bill in the Senate that is a direct threat to alternative communication. While proponents of the bill claim the goal is to protect the community from the dangers of “debunked” methods, the language is designed to protect the system, not the people. Language was added to the bill upon its introduction to the Senate, limiting communication options to “validated” methods (those with billing codes) and emphasizing independent communication. That intentionally excludes Spelling to Communicate and emerging forms of communication. It bans all facilitated communication, even if the only facilitation is someone holding a letterboard up.
As an autistic person, I’m enraged. Communication is a human right.
I read an article in the New York Times, written by Amy S.F. Lutz, titled “Profound Autism Is Difficult Enough Without This Debunked Method.” The article slams facilitated communication (FC) and emphasizes that the method is dangerous. And she’s not entirely wrong: it can be dangerous. But that doesn’t make danger inherent. Not every autistic person has the same mental capacity, nor can they all benefit from FC. Lutz speaks only of “profound” autism, completely ignoring the rest of the spectrum. “I cannot imagine how frustrating it must be for profoundly autistic people to be denied the ability to communicate their actual needs and preferences,” says Lutz, disregarding the irony of her statement.
The bill and article are the true danger in this conversation. Banning something because it doesn’t work for everyone is insane. I’m allergic to antibiotics, should they be banned because I can’t use them?
The bare bones: people believe they have a right to police autism. They frame it as protection but it’s an attack on our rights. “Nothing about us without us” means conversations that don’t include us are not about us; they’re about control. Our voices are the ones that matter. Our choices belong to us, not to politicians or well-meaning advocates.
#JoyDew #Autism #NothingAboutUsWithoutUs #FacilitatedCommunication #NewYorkSenate #NewYorkTimes #CommunicationIsOurRight
