I feel sick. Just saw a boy, maybe 4, on an elevator in a hosp bldg. Bilateral implants. He was yelling a bit, clearly having feelings. I tried to sign a little w/ him (hello, dodo?). Mom angrily says “we are trying to get him to speak, he just falls bk on sign too easily.”
It all happened so fast. (mom also said his sign is minimal so he will speak) They’re suddenly off the elevator. I know what I saw is just a moment. But imagine yr kid, unable to tell you what they need, want, feel bc you only want them to tell you those things in a certain way.
I’m writing these tweets while processing what just happened, shaking and weeping on a NYC street corner.
TBC, the sounds he was making were not intelligible speech. She said they were trying to GET HIM to talk. He’s 4! How many yrs of missed, precious toddler conversations were lost? I am so done w/ #LanguageDeprivation. Listen to deaf people, my god.
I will never forget his face peering back at me in the elevator as mom is dragging him away-I’m signing “Hope to see you later” to him. He’s looking at me, I’m not sure he’s understanding me, but he’s still for a moment and looking. Then the doors closed. 😭
Hrs later I still have lots of feelings. I’ve spent my career critiquing ableist systems that made this moment possible. Wrote a whole book on CIs & deaf kids. I’ve always steered clear of attacking parents b/c I think ppl do what they think is right, what they think is care...
...but it was such a clear moment: this parent had been so enculturated into a therapeutic imperative, into a need to fix...and all I could see was a child in distress b/c of it. When will we collectively see the harm this does? I encourage folks to listen to disabled people &
Next week I start teaching a new grad seminar on feminist approaches to disability, illness &care. I’ve created a “Course Ethos of Care” document. It says we are all under duress, & therefore will always choose the most humane option. We’ll check in w each other every wk 1/
We’ll estab frm the outset that no needs are “special” or unreasonable, they just are. As such we will strive to meet them. It encourages all of us to ask for what we need & not apologize for it. Extensions are always avail, ask for them & feel good about taking care yourself 2/
It states that we commit to being innovative & creative in doing these things & we’ll give ourselves room to not do it all. We’ll ll commit to collective & self care, continually ask for what we need, & revisit the document & add to it as necessary. 3/fin
It is an over the top love letter to a technology without any sense of critique or nuance. It presents the CI as always successful (it is not) and doesn't talk about the years of work it takes for children to learn to use it.
In fact, there are well known disparities with CIs with children of color and poor children faring worse with CIs. It is not a panacea that 'fixes' deafness - it is a tool that the most privileged can get the most out of