The Dilemma Of Deafness

Sujata Gupta profiles the Reid family, who faced an unexpected ethical quandary when they realized their daughter Ellie was deaf:

Parenting is full of big decisions. But in the first year or so of Ellie’s life, when other parents are focused on helping their kids to walk and talk, Christine and Derek had to think about an issue that many parents never even contemplate: They had to decide which culture their daughter should be a part of. Ellie could join their world, the hearing world, if she received cochlear implants. Yet implants don’t work perfectly. Everyday conversation can remain a challenge, for instance, especially when there’s a lot of background noise. What’s more, implants might cut Ellie off from a community that, some would argue, is her birthright: the Deaf world, where lack of hearing is an identity to be celebrated, not a disability to be cured. As Derek puts it: “How do you explain that she was fine the way she was born when the first thing we did was change her?”

Why many deaf people advocate resisting the technological fix:

For those in the Deaf world, many of whom were born with hearing loss, the very existence of cochlear implants wrongly presupposes that a deaf person is in need of fixing.

In 1993, when the technology was in its infancy, journalist Edward Dolnick explained the Deaf cause to the hearing world in an article in the Atlantic Monthly titled “Deafness as Culture.” Dolnick quoted Deaf Life magazine: “An implant is the ultimate invasion of the ear, the ultimate denial of deafness, the ultimate refusal to let deaf children be Deaf.” In this view, the Reids, should they implant Ellie, would be perpetrating a horrific crime.

Discrimination against the deaf is termed “audism.” When I ask members of the advocacy group Audism Free America how they feel about a “cure” for deafness, they equate it to a cure for being black or female or gay. I counter that the analogy might be a stretch, since deafness is the absence of a key sense. Karen Christie, one of the group’s founders, rejects the notion. “People aren’t absent of whiteness,” she writes to me over Skype. “I am a woman but I am not absent of a penis.”