Important new open access article by Humphries and colleagues: An approach designed to fail deaf children and their parents and how to change it https://t.co/fV6TfpUvvq
Excited to announce the publication of my first article from my dissertation. It provides an examination into hearing culture and a working definition as well!
https://t.co/dFMGyurJEt
@AEfronArts That’s informed by your Deaf perspective right? In their eyes, it’s an easily curable disability to fix. Like LASIK surgery for eyes? They did not mention eugenics or destroying Deaf culture. It’s not even in their realm of possibilities from what I gathered.
@AEfronArts Dr. Burke made that point - even if you fix someone’s hearing - they’re still deaf. And the researchers also mentioned that genes could “expire”
@LealaHolcomb Oh wait. Wrong tweet. The presenter for this was Dr. Teresa Burke from Gallaudet. I thought you were asking about the Vanderbilt presenter on screening from a diff workshop
How to have conversations about deaf gene therapy and editing? Three main points: Must have deaf people in the room; acknowledge our differences. Must acknowledge it’s enormously painful to be asked to justify why you and others like you deserve to continue to exist. #ehdi2024
@AEfronArts TBH their perspective is just “how exciting! We can fix this disability”. They’re ignorant. They’re not actively seeking to destroy cultures or communities - only to fix a medical problem. Zero mention of Deaf culture or communities during their presentation. All medical context
At the panel’s close -we were informed not to share any images/video of the content. Kinda hard to shove that toothpaste back in the tube once it’s out. Curious of the purpose for the media blackout? This groundbreaking info shd be openly discussed! Also no time for Q&A 🤔 .
This picture is the diverse representation of the deaf communities at #ehdi2024 - not just students - but also professionals, doctors, lawyers, early interventionists, parents, college administrators, state agency representatives, EHDI program coordinators, etc etc
Doctrine of Double Effect - when a decision made had a second (predictable) but unintended consequence. Eg. Gene therapy on deaf children contributed to a smaller number of signing Deaf people worldwide. Communities need a critical mass of people to flourish.
Will gene therapy eliminate signing deaf people from this world. “The history of eugenics is a part of the trauma that has contributed to this fear” #ehdi2024