Carola has worked and volunteered for agencies serving the hearing loss community for many years. She is also a freelance writer.
“Deaf Man Hears Daughter's Voice for the First Time After Cochlear Implant: 'It Was Very Sweet'”
“Try not to cry challenge, people hearing sound for the first time”
“My wife hearing for the first time! Amazing!”
“Man Hears for The First Time In 20 Years”
“Hearing My Husband Say I Love You for the First Time”
“Adorable: Baby's Reaction Hearing New Sounds With The Help of Hearing Aid”
As a disability advocate and writer, I often come across videos with similar titles. These videos are designed to make viewers “ohhh” and “ahhh” and feel good about the wonders of modern medicine. While rejoicing for people who hear for the first time may not be wrong in itself, the videos do not tell the whole story about people’s experience with assistive listening devices and cochlear implants (CIs).
About Cochlear Implants and Hearing Aids
Hearing aids boost hearing by sound amplification for those with mild to moderate loss. It consists of an amplifier, speaker, and microphone. Many types are available as wearables or may be surgically bone-anchored.
According to the Mayo Clinic, a CI consist of a sound processor that fits behind the ear and a receiver surgically implanted under the skin behind the ear. The processor bypasses damaged areas of the ear by capturing sound signals to the auditory nerve and transmitting them to the receiver. The brain then interprets thee signals as sounds.
Why “Hearing for the First Time” Videos are Problematic
CIs and assistive listening devices do not work for everyone
I have met people who tried hearing aids and did not find them helpful. Cochlear implant surgery is also not suitable for all people with severe hearing loss for one reason or another. Some people who are born deaf are not helped by CIs, especially if they receive their devices in their teens or later in life. Teenagers may find the world of sound to be a bewildering cacophony of auditory stimuli that they are unable to process or understand. Eventually, they will give up on using the device.
The success of assistive listening devices and CIs are dependent on several factors such as when the person lost their hearing and their level of language acquisition. A child who is born with severe hearing loss and receives a CI early in life will require a lot of training and rehab to be able to interpret auditory information and learn spoken language. Postlingual deaf people with new implants need training over time to interpret CI signals and gain a lot of understanding of speech within a year.
The use of the word “hearing” is misleading
The way that this word is used in some videos is misleading. There is a lot more to hearing than just being able to receive audio information. It also involves being able to recognize and distinguish between sounds like a parent’s voice, a honking car horn, and music. Some people who are born with severe hearing loss are surprised to learn the variety of sounds in their environment such as the wind rustling through trees, waves on the ocean, and – well, the sound of passing gas.
Hearing sounds is not enough to benefit people. They need to be able to interpret the words and auditory information they are receiving to experience true communication.
Sound through CIs are not the same as regular hearing
CI users may hear only parts of sounds and hear auditory stimuli differently than regular speech. CI users hear auditory information differently than hearing people do. I have heard the sounds described as robotic or like trying to understand the cartoon character Donald Duck.
Many people with hearing loss do not want to be “inspiring”
The media tends to objectify people with hearing loss and various disabilities as sources of “inspiration.” Viewers and readers are supposed to feel better about themselves because a pitiful “handicapped” person “overcame the odds” or finally had what the world labels a deficit fixed.
The disability and hearing loss communities are speaking out against this practice because they think it is condescending. They want to be accepted as whole human beings who are treated with dignity and respect. These communities want to be treated as equals and have opportunities to get a good education, pursue relationships, work, and live a full life. They do not want to be held up as objects of pity to make other people feel good about how superior and disability-free they are.
Some deaf people do not want to be fixed
Some people who identify themselves as deaf and identify themselves as members of a deaf community oppose CIs. These people consider their severe hearing loss as a part of who they are and not as a bad thing that requires fixing by medical intervention.
Some deaf people have adapted to their hearing loss by developing sign language and a unique culture. They do not think of themselves as having a disability that needs to be fixed and may value sign as their form of communication. They may resent the idea that they have to have CIs or assistive listening devices to be a whole human being.
Many others with hearing loss are open to considering the benefits of CIs and other devices. Many parents, including deaf parents, are choosing to have their young children undergo surgery for these devices. I sometimes attend deaf events and notice that many of the young deaf children attending with their families are wearing hearing aids or had cochlear implants.
CI surgery and rehab has certain risks that videos do not address
Many people have legitimate concerns about CIs such as:
- The surgery, needed rehab and aftercare can cost up to $75,000 US if they are not covered by insurance or medical assistance programs in the country where they reside
- The procedure is a major invasive surgery
- CI surgery can destroy any residual hearing
- There is a risk of surgical complications such as inflammation or device failure
Some people experience pain or discomfort
For some, the activation of assistive listening devices can be uncomfortable and even painful. Their first experience of sound would not be considered inspirational. The videos online do not reflect everyone’s response to hearing sound for the first time.
For deaf advocates such as 2015 America's Next Top Model winner Nyle Dimarco, these videos are problematic because they can be misleading and leave out vital information about cochlear implants and assistive listening devices such as hearing aids. They also want people to accept sign language as a valid means of communication.
There is no doubt that assistive listening devices and cochlear can greatly benefit people with hearing loss and we can be happy for them. We should be aware, however, that there is a lot more to their stories than fodder for “feel good” stories. These are real people who are taking a challenging but often rewarding journey to hearing.
Cochlear Implants, Mayo Clinic
‘Baby hears for the first time’ videos aren’t inspirational, they hide the reality of Deaf lives, Metro, Nyle Dimarco and Bobby Siebert
Nyle DiMarco Gives A Good Reason To Reconsider ‘Inspiration Pørn’ Videos, Huffington Post, Jamie Feldman
The space in between: on hearing loss and cochlear implants, Medium, Beth Williams
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Glenn Stok from Long Island, NY on February 23, 2019:
You brought up some interesting facts that I never considered Carola. It makes sense that a person who is hearing for the first time after having a CI, will not have any idea what the sounds mean.
They would definitely have to learn spoken language as a new method of communication. I find it so silly how the doctors in those videos asked questions, as if the patient could understand spoken language—having never heard it before.
An analogy I thought of while I was reading your article... imagine if we were suddenly capable of seeing infrared light, or ultraviolet light? What if we were suddenly capable of hearing ultrasound as whales do. These new senses, that were never experienced, would overwhelm us—or even scare us.
Tim Truzy from U.S.A. on February 09, 2019:
Excellent, Carola. Your article nailed this topic precisely. This is why I continue to read your work: Not only are you an advocate, you communicate in a way that is easy to comprehend.
People with hearing loss and vision loss, as well as individuals with other disabilities, prefer to live with the knowledge that in every interaction they will be treated with "dignity and respect," as you stated so eloquently. Changing a situation does not always equal happiness. Pity from the public is not conducive to a realistic discussion of the subject of living with a disabling condition.
However, awareness of the public's general misunderstanding in encounters is important to these groups. Essentially, if a person with a long-term permanent disabling condition discovers that a member of the general public was acting out of misunderstandings, education must occur. The benefit of such gentle education is to win allies for all individuals with disabilities. Some people with disabilities reject the notion that they should help the public grasp how they should be treated, but I always inquire: "Then who else is better? Who else has the knowledge? Who else can work to make a better tomorrow?"
Active compassionate engagement increases awareness without contributing to the negative perceptions which have thwarted so often the development of positive attitudes toward people with disabilities. It takes two sincere parties to make this reality occur.
Carola, thank you for writing thoroughly and with sincerity about these topics. You are a champion in my book.
Rachel Horon from Indiana on February 09, 2019:
I watched one of those videos before. As sensational as the videos are, the sensations come from the joy of the parent or individual taking the video rather than the person who is hearing sounds for the first time. I hear happiness, but I see reactions of confusion in the face of the hearing impaired. You are so right how there is more to the story that a 3 minute video does not share.
A year ago my teenage son was fitted for bilateral hearing aids. We waited so long because his hearing frequency loss was not discovered until school, and even then we trusted the advice of the ENT that it would not affect his schooling. Years later we did see its effect and we got a second opinion. The audiologist on site fitted him for a loaner pair to see if it made an impact and improvement. The look in my son's eyes when he hear subtle sounds AND INTERPRETED them was moving. It was confusion, inquiry, and realization before there was awe and surprise. We did not film it. We did not share it.We let him tell his story about new sounds. Thank you for this article that is more informative about the reality rather than the social media hype.