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Salk scientist brings his personal experience to science, culture of deafness

Uri Manor does more than one thing at the Salk Institute. For one, he is a specialist in microscopic photography.

The hallway near his office is lined with his photos of cells. One photo shows so-called hair cells that inhabit the inner ear and vibrate with sound, sending signals to the auditory nerve. Problems with those cells can cause deafness.

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That is what Manor, a cell biologist, studies in his lab.

“You can imagine then that if just a little mistake or a little alteration in the instructions in the DNA, on how to construct that hair, can cause it to have a different enough shape that it no longer functions properly,” Manor said.

Uri Manor has been severely hard of hearing since birth. He has never been able to hear properly without hearing aids, something his parents realized when he was 2 years old and still could not talk.

Being hard of hearing has given him a deep understanding of the science and the culture of deafness. Though he is not deaf, Manor knows what it’s like.

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“As someone who has hearing aids, I go back and forth between the two worlds — between deaf and hearing,” he said. “Because when I turn my hearing aids off, it’s over. I don’t hear you anymore. I kind of know what that’s like.”

Deafness and being hard of hearing take many forms. We all lose hearing with age. Loud music and our noisy mechanized society also damage hearing. Manor inherited, from his parents, who were not hard of hearing, the genes for profound congenital hearing loss. A member of Manor’s lab, research scientist David Rosenberg, lost his hearing in one ear. He remembers when it happened in college.

“I was sitting for a physics exam and heard this very loud ringing coming from my head, from my ear,” Rosenberg said. “And it was the first symptom of a vestibular schwannoma.”

That means a tumor developed on his auditory nerve. It was surgically removed, but by that time he had basically lost his hearing in his right ear. He remembers talking with the surgeon after the tumor was removed, and the doctor rustled his fingers next to the damaged ear.

“And I think at the time I (still) had some residual hearing," Rosenberg said. "So when he did that test, I was like, ‘Yeah, I can hear it a little bit.’ He said, ‘Good,’ and then walked away. So that left this impression on me that was … ‘Oh, I’m fine,’ but the reality was that I wasn’t fine.”

Rosenberg and Manor are now writing a grant proposal to fund research that could find a way to prevent the growth, or even shrink those tumors, by implanting in people a working copy of a crucial gene.

Science and Deaf culture

A viral video, one of many similar ones online, shows a woman holding her deaf baby who has had her cochlear implant turned on for the first time, allowing her to hear her parents’ voices. The baby smiles.

Manor, the father of four kids, said seeing a similar video moved him to tears. But he said some reactions to it on social media were very negative, including one who called it "cultural genocide." It’s a common term that suggests that efforts to “cure” deafness are undermining a community that has its own language and ways.

The California Association for the Deaf didn’t respond to KPBS' requests for comment.

Manor said that for deaf people, sign language, their culture and the community have been live savers.

“They join the Deaf community and then they have this whole word of technology, and language and people who understand them," Manor said. "And many of them feel like this idea of curing them, or even calling them disabled, is offensive.”

Manor added that he’s become careful to say he is not trying to cure deafness, he’s trying to give people the “option” to be able to hear.

Looking back on his own story, he said babies these days don’t have to wait until they’re two for their parents to realize they are functionally deaf. Tests are done on newborns.

“I have pictures of my daughters in the hospital wearing special headphones that can measure whether their ears are working properly,” he said.

Manor said the gene mutations that cause deafness are recessive, which means kids have to get them from both parents to be affected. Manor says that none of his four kids are hard of hearing.

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