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Sound of Metal
New Feature Length Film on Deafness
                                

July 8, 2021

The Hearing Journal (July 2021 issue) featured “Hearing Loss Representation: Hits and Misses,” on coverage of hearing loss in popular film and other media. ACI Alliance Executive Director Donna Sorkin was interviewed and commented on how inaccurate information—even in dramatic accounts—contributes to misunderstanding and underutilization of hearing technology solutions.

To see the full article click here
To download a PDF click here
April 21, 2021

American Cochlear Implant (ACI) Alliance Executive Director Donna Sorkin will be joining Dr. Sean McMenomey of NYU, ENT host of Doctor Radio, and Dr. Colin Driscoll of the Mayo Clinic on the Doctor Radio show on SiriusXM on Wednesday, April 28th at noon ET to discuss the film “Sound of Metal.” This link can be used to hear the channel/segment live and the show replays at 10pm ET on Wednesday and 2pm ET on Sunday, and listeners can also hear the show for up to 30 days after it airs in podcast form. This link can be used to access the transcript for the show. NIH Director, Dr. Debara Tucci, also comments on the film here.
February 2, 2021

ACI Alliance Executive Director Donna Sorkin also spoke with USA Today about the inaccuracies in the film regarding cochlear implantation.
December 9, 2020

A new film, Sound of Metal, premiered in early December 2020. Initially we thought to ignore it as another film denigrating cochlear implants and promoting the perspective that deafness doesn’t need to be fixed. But the critical reviews of the film, noting superb acting and remarkable audio effects were convincing. As an adult who experienced rapid hearing change some 35 years ago, the emotional turmoil and fear as portrayed by the lead character Ruben rang true to me. It was gut-wrenching to watch him go through the utter despair of experiencing sudden deafness which was further amplified by his status as a heavy metal musician and former drug addict. Some CI recipients who watched the film mentioned that they identified with the perception of weird new CI hearing on the day of Ruben’s activation—not uncommon among recipients during that early part of the process. Of note was how quickly Ruben was able to communicate orally soon after activation of his cochlear implants when he travels to France to reconnect with his girlfriend. This after a total inability, prior to the CI, to understand speech. Such a rapid outcome is remarkable but is not unique.

But there is so much that is factually wrong with this film in terms of the cochlear implant process. Given the meticulous research that the director notes in interviews, one has to wonder why the filmmaker chose to insert so much misinformation into the story. At the initial audiology meeting, Ruben is told that cochlear implants cost between $40,000-$80,000 and health insurance doesn’t cover this expense. That is false—cochlear implantation is covered by Medicare, Medicaid and the vast majority of private insurances. Ruben’s surgical scars were characterized by one surgeon as “comical.” The J-shaped incisions on Ruben’s head have not been used since the 1980s and were never that large. My CI surgery, completed in 1992, was a one-inch incision that was not visible—my hair covered it.

It is inconceivable that any cochlear implant program would proceed without a meticulous evaluation of a patient—particularly one who experienced sudden hearing loss. For every patient, a medical and audiological evaluation is conducted. The process is thorough and empathetic. Patients are counseled on what to expect during the early weeks and even months as their brain learns to interpret the new signal as meaningful sound. Someone like Ruben who experienced sudden hearing loss and is implanted quickly would likely have a positive outcome but it does take time. That aspect of the process is entirely missing. The CI audiologist is portrayed in a most negative manner with no counseling and no long-term expectations provided, nor discussion of the need for support. Ruben is sent on his way as if he has completed a transaction; this is not anything like the actual process.

I have been privileged to serve as a patient advocate in various capacities for over 25 years—interacting with thousands of people of all ages and from various walks of life. I have never witnessed a CI activation that looks like this. Everything about this film is designed to cast a negative light on cochlear implantation--an extraordinary intervention that restores a sense and provides access to sound for adults (who lost their hearing or never had it) and for many children for the first time. My own life and that of my family has been a story of astonishing benefit—indeed benefit that I never dreamed would be possible. How unfortunate (and predictable) that a film on deafness that portrays so sensitively what it’s like to lose one’s hearing should be so negative about the prospects for hearing restoration.

Donna L. Sorkin, Executive Director, ACI Alliance
The mission of the American Cochlear Implant (ACI) Alliance is to advance access to the gift of hearing provided by cochlear implantation through research, advocacy and awareness.