“CIs shouldn’t be compared to cures for diseases. A better comparison would be to a prosthetic leg. Prosthetic legs enable people without legs to walk, but they don’t have the same functional ability as real legs. Prosthetics are tools, not cures.”
Cochlear implants (Cis) can give some auditory perception to deaf people. But they can be misunderstood by members of the hearing and Deaf communities alike. In this Facebook post (reprinted below), Sarah Sparks reflects on her experience of living with a CI for the past year. She breaks down several common myths about Cis and provides some balanced perspective on the benefits and limitations of having a CI.
Check out her post on Facebook here.
One year ago today, my cochlear implant was activated. The past year has been a mixed bag of experiences. I’ve learned through these experiences that as much as the world needs education about Deaf culture and sign language, it also needs education about CIs. So, on the first birthday of my fake hearing, these are some things I wish other people knew about CIs and CI users. Some of these are directed at hearing people and others are intended for Deaf people who don’t use CIs:
– Not every activation is like what you see in the viral videos on social media. My activation day was painful and a traumatic experience. I had an air pocket between my skin and the internal device that was causing problems, and I had to be reactivated a few days later.
– Further on that topic, not every activation video you see is a CI. There are different kinds of implantable devices, and some are not for deaf people. There are cochlear implants, middle ear implants, bone conduction implants, and auditory brainstem implants. The best known viral activation video (the one with the woman who has black hair and tattoos and starts crying with joy immediately) is, in fact, a middle ear implant activation. Middle ear implants are not for deaf people.
– My experience of hearing with a CI has not been the same as what I remember from years ago when I had typical hearing. It sounds artificial. A year later, it still sounds artificial. Humans sound human, but not like they did years ago.
– CIs shouldn’t be compared to cures for diseases. A better comparison would be to a prosthetic leg. Prosthetic legs enable people without legs to walk, but they don’t have the same functional ability as real legs. Prosthetics are tools, not cures. Also, most insurances classify CIs as prosthetics. A CI is an auditory prosthetic.
– Many people with CIs do not hear as well as you think we do. My aided thresholds on my best day are between 30 and 45 dB HL. Even with my processor on, I do not have the audibility that a person with typical hearing does. And audibility isn’t the same as clarity; I don’t hear as clearly with my CI as a person with a mild to moderate hearing loss who uses hearing aids would.
– Although there are CI users who hear well enough with their devices not to need additional support, that’s not true for all. Many CI users need to read your lips to understand your speech. In noisy or echoey environments, I might as well not have my processor on because I can’t hear in those spaces.
– Although having a CI and benefiting from it is a kind of privilege, CI users aren’t as privileged as you might believe. Some of us struggle to get the accommodations we need because of other people’s assumptions about how well we hear. A good metaphor for this is the lower middle class high school student whose parents don’t have enough money to pay for college, but they make too much money for the student to qualify for federal grants. My experience as a CI user has been in a similar middle space: I hear enough that lots of people tell me I’m a hearing person, but I don’t hear enough to function exactly like a hearing person in the hearing world. I still need accommodations for access.
– Having a CI doesn’t make a person “not deaf”. CI users don’t hear anything through the device when our external processors are turned off. We don’t sleep with them. We don’t shower or swim with them (with the exception of some who use the water wear for these situations). Many of us need to take short breaks from them in situations with overwhelming noise. The internal implant does nothing without the external processor.
– “Having a CI means not needing sign language” is a myth. CI users communicate in a variety of ways. There are many CI users who sign, work with interpreters, and need sign language access for classes, work, and events. CIs give a person auditory access, which is not the same as language access or language development.
– “Having a CI means you want to be part of the hearing world instead of the Deaf world” is a myth. We can be part of both worlds. Many CI users want to be part of both worlds. We are discriminated against in both worlds, though. I hope that will change in time as more people learn about the benefits and limitations of CIs. It’s possible to love your CI and love sign language too.
– Deaf and hard of hearing people who were once hearing and now have CIs are in a uniquely challenging situation. Sign languages are not our native languages, so learning and communicating in a sign language requires a huge amount of commitment. Spoken languages are our native languages, but they’re no longer fully accessible. For a person in my situation, the only form of fully accessible language is written. CI users like me try our best to make do with what we can get from two languages without full access to either.
– The risks of CI surgery and CI use are often overstated by Deaf people who don’t use CIs, or who have older CIs but don’t use them. Damage to the facial nerve, meningitis, and botched surgery are risks, but they are low risks. Today, CI surgery is a fairly simple procedure and is usually performed outpatient. It isn’t brain surgery. It’s no more bloody or violent than other outpatient surgeries. And it doesn’t necessarily destroy all residual hearing like it used to. There are many CI users who have residual hearing in the implanted ear. Spreading false information about CIs does not make sign language more appealing; it makes CI candidates and their parents angry when they find out the truth. It alienates hearing parents who might otherwise be open to sign language for their deaf children.
– Deaf and hard of hearing CI users who communicate in both sign language and spoken language have almost no advocates. There’s plenty of advocacy for oral deaf and hard of hearing CI users who don’t sign. There’s also advocacy for greater understanding and acceptance of the signing Deaf community. But D/HH people who are part of both worlds and communicate in both modalities and languages have pretty much nobody advocating for our needs. We need you to listen and support us because using CIs does not make us immune to audism.