Deaf News Briefs: Deaf author Sara Nović on gene therapy; Brighton police sued by Deaf people
Alex, Daily Moth Reporter: I have two Deaf News briefs.
The first is from Sara Nović, who is a Deaf author and a mom. This picture is of her and her sons. She wrote an opinion piece for the Philadelphia Inquirer expressing deep concerns about gene therapy that was done at the Children’s Hospital of Philadelphia (CHOP), where a 11-year-old deaf boy had his hearing restored.
I covered this news about a month ago.
Nović said she has ethical questions about the boy’s participation in the gene therapy trial because he may be language deprived due to growing up without schooling in Morocco and using self-invented signs until he moved to Spain three years ago, where he learned Spanish Sign Language. Did the boy understand what he was participating in when he received gene therapy?
Nović said now the boy’s audiogram shows that his hearing sensitivity is now nearly normal, even though he may not understand speech. Now the boy may be disqualified from receiving resources provided to deaf people, such as accommodations and government services. She questioned whether the researchers thought of a plan to help the boy and others who have restored hearing.
Nović raised a broader concern that when this gene therapy technology is perfected and viewed as an easy fix, Deaf people’s rights and protections under federal law will be stripped away.
Nović shared many more profound thoughts and concerns. The link to the column is in the description and transcript.
———
Sponsored video by Convo: www.convorelay.com
———
988 Helpline (Description)
Exciting News! The 988 Lifeline launched new American Sign Language services for callers who are Deaf or Hard of Hearing. It’s a new resource for people to access help when they need it. Visit 988lifeline.org and select “ASL Now.”
———
The second Deaf News brief is that there are several local news reports from Brighton, New York — near Rochester — about two separate lawsuits filed by Deaf people who said they experienced discrimination from Brighton police.
The lawsuits were filed at the beginning of February and the Eisenberg & Baum law firm is representing both parties.
The first case is about a pair of Deaf parents who tragically lost their 29-year-old Deaf son to suicide in 2021. The parents said when the son had mental health crises that were so serious that Brighton police was called to help, Brighton police never provided ASL interpreters, either in-person or through VRI, despite being asked to do so. Police communicated using simple messages on an iPad or on notes and the parents felt like the police did not understand the severity of what was happening. The parents said they tried multiple times to educate the police department, but their requests were never followed. The lawsuit said on the day their son died, police did not immediately provide an interpreter and that one did arrive, but only after most investigators had already left. The parents felt like they were not able to ask questions, explain their situation, or fully understand what had just happened.
The second lawsuit is about a Deaf RIT student from Tennessee. In 2021, he was working as an Uber driver when he was pulled over by a police car. He tried to communicate that he had a firearm inside the car but there were communication breakdowns. The deaf student was arrested and transported to jail and there were no interpreters provided. The student was later released. He filed a complaint and received a response from Brighton police that they didn’t consider it a violation of policy if they didn’t provide an ASL interpreter.
Both lawsuits are asking for compensatory damages under federal and state law and policy changes with Brighton police providing interpreters. For more information, the links to the reports are in the description and transcript.
Nović Opinion Piece:
https://www.inquirer.com/opinion/commentary/gene-therapy-deafness-no-cure-20240221.html
Brighton Lawsuits: