Myths and Misconceptions Surrounding People with Hearing Loss are Deafening

One friend was surprised she didn’t scream at the TV until half an hour in. Another poured a stiff drink before viewing. I gritted my teeth and forced myself to watch for the purposes of journalism. No, this wasn’t another White House Press Briefing, but a one-hour documentary on A&E called Deaf Out Loud. Airing recently, the show features three predominantly deaf families to show that not all deaf people are alike and to bring the deaf and hearing worlds together.

If anything, however, the show has widened the divide as it promulgates misconceptions about deafness. It’s basically a “disgraceful, one-sided, piss-poor piece of propaganda,” as someone so astutely stated on social media.

I know this because I’m deaf. In fact, as a deaf journalist, I’m appalled. If parents of a newly diagnosed deaf child were to watch this show, they wouldn’t have accurate information about deafness, much less all the options available to them.

The three families on the show are the Mansfields, Garcias, and Posners. Manny Mansfield and his wife Sheena are deaf and use American sign language (ASL). They have two daughters; one hearing, one deaf. Paco Garcia has been deaf since birth, and his wife April is a hearing child of deaf parents. They have six kids, four of whom are deaf. The family speaks and signs. Mick Posner was born profoundly deaf, as was his son Henry, while Mick’s wife Rachel and their daughter Faith have a progressive hearing loss. They all wear hearing aids (HAs) and use a combination of speaking, reading lips, and ASL to communicate.

Ten thousand points to Hufflepuff if you can figure out what the number one takeaway is already: the assumption that all deaf people sign, even if they use listening and spoken language (LSL). This LSL demographic isn’t a small group, as only about 5 percent of children born deaf or hard of hearing are born to deaf or hard of hearing parents. These parents usually choose to raise their children with an LSL approach. It’s also common for deaf parents who have deaf children to choose LSL. In a survey by the National Center for Hearing Assessment and Management, 66 percent of families reported their child’s primary communication modality was either only or mostly LSL. Just 6 percent of families reported their child used only or mostly ASL.

The show feeds into this erroneous assumption with its first figure – “the Deaf community in the U.S. is made up of over 35 million people,” which isn’t accurate. This number refers to anyone with a hearing loss, including those with mild hearing loss who don’t use hearing aids or any technology. The largest portion is people who lost their hearing as aging adults. By lumping everyone together in the capital-D Deaf community, speaking deaf or hard of hearing people are miscounted. The big-D signing community has actually been estimated to be under a half million.

When cochlear implants are addressed, the show loses all semblance of objectivity. A screenshot says that 80,000 people worldwide have CIs of which 60 percent are children. This number is too low. It’s about 100,000 in the U.S. and probably close to 300,000 worldwide, according to Donna Sorkin, Executive Director of the American Cochlear Implant Alliance.

Only half of all American children who could benefit from a CI actually receive one, compared to Europe, where 9 in 10 receive implants. This is because many American parents don’t know about this option, and that’s partially due to the information provided coming from the Deaf cultural community: deaf people for whom deafness and sign language make up their primary identity.

Indeed, by lowballing these numbers, April’s claim in Deaf Out Loud that getting cochlear implants (CIs) is a risky procedure appears to be substantiated. In reality, it’s a common surgery, has lower risks than many other surgeries and is even done on an outpatient basis. April says that CIs can cause nerve damage, facial paralysis, and constant headaches. Nerve damage and facial paralysis are extremely rare because electrodes are placed on the patient’s face to monitor the facial nerve during surgery. Some people may experience headaches in the first week after activation as the brain gets used to sound input, but otherwise, headaches aren’t typical.

There are many published studies on the safety and efficacy of CIs. One device from one company over a decade ago was associated with a few deaths in children due to meningitis but has since been corrected. Every recipient is now supposed to get the meningitis vaccine prior to surgery. Deaf people who consider deafness to be the main part of their identity and culture are threatened by CIs and tend to believe in myths the way April does.

At one point, Manny and his wife disagree about the options that should be presented to a family of a newly diagnosed deaf child. Manny thinks ASL should be the first option and CI the last. “Of course [hearing parents are] going to go with the CI when doctors are giving them the message that their child should be fixed so that they can be more like their parents.”

I asked my parents what they thought of Manny’s claim. They said it “definitely wasn’t about us, but rather all about you. To us, using ASL as your primary language would likely be a narrower life (fewer options and opportunities) versus you being independent and living a full life.” Every day, I’m grateful that my parents made this decision.

What’s really interesting is that all six parents are in the ASL business, with two of the three families making money off of ASL. Chalk this up to one of those things that make you go hmm. This gets to the crux of my problem with Deaf Out Loud: it purports to represent the diversity of deaf people, yet it really only speaks for 1 in 70 people with hearing loss, as in the ones who sign. Spreading myths and a narrow view does the public a gross disservice.