Listening ACCESSability

Today is World Cochlear Implant Day! In anticipation of the special day, we spoke with our friend and bilateral Cochlear Implant user, Andrea Lepore.

Cochlear Implants allow those with hearing loss not well managed with hearing aids to immerse themselves into the hearing world. A far cry from the body-worn devices first used in the 60s and 70s, technological advances over the last few decades have significantly reduced the size of the sound processor (external device), and improved listening and spoken language outcomes for those who are Deaf or Hard of Hearing. Though controversial for some, this invention has been life changing for many around the world.

Andrea is a Teacher of the Deaf and lives in Montreal, Canada. Be sure to check her out on Instagram @yellowbrickroadie!

Hi Andrea, thanks for agreeing to talk to us about your experiences with cochlear implants as a bilateral user.

My pleasure!

Can you explain to us what Cochlear Implants are?

Cochlear implants are sensory devices that allow those who are profoundly deaf to hear, to receive and process environmental sounds and speech for access to language, communication, and learning. They come in two parts: an internal implant and an external sound processor worn behind the ear. One cannot function without the other. Cochlear implants bypass the normal ear channels, directly providing electrical stimulation to the auditory nerve. Through everyday listening and intensive auditory training, one begins to interpret the electrical signals as sound and speech. It’s quite fascinating!

Cochlear Implants can be controversial, and they’re also a big decision, why did you decide to get CI’S?

My hearing loss further progressed in my early 20s. This was a very difficult, unsteady time for me, where fear of the unknown crept in at a very pivotal time in my life – at the end of my final undergraduate teaching internship. I briefly questioned my ability to sustain a positive mental state and healthy work-life balance as a teacher with severe-to-profound hearing loss… and I think the voice of doubt inside my head grew louder when there were others who questioned my journey to become a classroom teacher. I think their response was steeped in ignorance rather than negativity. But as with everything else in my life, I adapted. Around this time, a former teacher and mentor from high school encouraged me to look into cochlear implant surgery. We had kept in touch over the years and she would occasionally drop off documents, articles, and VHS tapes related to hearing loss and cochlear implants in my parents’ mailbox. What a blessing she was. Based on the research I subsequently conducted, I was a prime candidate. I decided to apply for my first cochlear implant and received it in December 2004.

Now that you have lived with your Cochlear Implants for a few years, what do they mean to you?

My cochlear implants are an important part of my everyday functioning; my interactions with the hearing world, my personal and professional communications. They connect me to the important people in my life. For this, I am grateful. I’m not attached to them in the way that maybe I would have been had I received them as an infant or young child. On my own time, I’m not anxious about being without them. I rather enjoy the silence.

How do you find that your Cochlear Implants (CI’s) help you on a daily basis?

My CIs mainly help me communicate with the people in my day-to-day life. They especially allow me to better meet the demands of my job as a teacher of the deaf working with students who are deaf or hard of hearing using a listening modality to communicate and learn and learn. This has been an especially difficult school year, transitioning to my job as an itinerant teacher of the deaf and hard of hearing, having to communicate with a variety of communicators and personalities in a variety of schools on a weekly basis. My CIs no doubt elevate my functional listening abilities; I have good access to speech, music, high-pitched environmental sounds, and I can more easily separate background noise and localize sounds bilaterally. They aren’t perfect, I still have to advocate for my listening needs, break through barriers, and rely on a support system, but they have enriched my life. 

We know that you are a keen advocate of your assistive technology, how do you use this with your Cochlear Implants?

As a teen, I mostly stayed away from assistive communication technology like remote microphone systems because the technology just ‘wasn’t there’. In those days, there were things that bothered me like the sound quality and how the microphone picked up too much the background noise. These days as an adult, I take so much pleasure in using my Roger On. It connects to my sound processors via Bluetooth, and it’s quite dynamic, automatically adapting to the manner it is being use, i.e., in presentation mode, interview mode, or table mode where the omnidirectional mic is activated to pick up surrounding voices in a group meeting or discussion. I love it, mostly because it makes me feel more at ease and confident about what I’m hearing in different situations. 

What do you wish that you had known more about before getting Cochlear Implants?

I think I was pretty well prepared for my CI journey. I don’t think I wish I had known anything that I didn’t already know. While I had an excellent prognosis based on my history, my patient profile, i.e., post-lingual hearing loss, consistent hearing aid use and stimulation, I needed to manage my expectations nonetheless. My added knowledge of the devices, the process, the possible outcomes, and the history as a teacher of the deaf helped me prepare. This isn’t the case for everyone. Most people, families, parents of children who are deaf or hard of hearing need to rely entirely on others, like the medical and educational professionals in the field, to guide them. 

Are there things that you wish that your Cochlear Implants could do that you hope will be possible in the future?

My CIs can do a lot, so at this time not really. I maybe wish that they were more intuitive, more dynamic. This will come with time as the technology evolves. You always want things to be easier, more ‘natural’, without having to change settings, for example, but my current CIs can already do a lot of this. I’m excited for the future.

What advice would you give to someone who was considering getting Cochlear Implants?

I would say, do your homework, talk to others who have been through the experience, investigate the pros and cons, understand all sides, take your time, and be ready to put in the work. The work is lifelong. Seek out a well-rounded support system. It’s a miraculous piece of technology, but it’s not going to do everything for you. As I’ve said before, listening with a CI is always a work in progress. It’s a lifelong journey of adaptation and self-understanding. Nothing about it is automatic, one-and-done, or incidental. It takes intention, and a great deal of attention, creativity, and persistence.

What do you wish that people knew more about when it comes to Cochlear Implants?

More than a couple of things:

1. CIs are life-changing.
2. CIs are a wonderful tool.
3. CIs can connect you to others.
4. CIs are not a cure.
5. CIs are not a magical fix.
6. CIs are technology and technology can fail.

I think that if we can all look at CIs as a wonderful tool, a tool to be chosen by the d/Deaf and used on their own terms, to give them access to those things that would maybe add to their life, not fill a void, then I think we could achieve some common ground, a greater understanding across deaf, Deaf, and hard of hearing communities who are so at odds over this device. I can only speak for myself, but my CIs have not made me a hearing person, they will never replace my deafness, they will never erase my identity: Deaf. 

Andrea, thank you so much for joining us today, and helping us to celebrate World Cochlear Implant Day. We are also excited that the MUHC (McGill University Health Centre) in Montreal has just become the second location in Quebec to provide Cochlear Implant surgeries. This means that a larger proportion of the Quebec population now has access to implantation surgery without travelling to Quebec City. With 10% of the population of Canada living in the Greater Montreal area this sees an improvement in services, and lower wait times across the province, with less travel, reducing stress for patients and their families, especially those of young children with hearing loss.

World Cochlear Implant Day is an annual global event that is celebrated on February 25th each year to raise awareness about cochlear implants and their benefits for people with severe to profound hearing loss. World Cochlear Implant Day was first celebrated in 2004. Since then, it has become an important day for the cochlear implant community to come together and share their experiences, educate others about hearing loss, and advocate for access to hearing healthcare services for all.