My hearing loss is of the sensorineural variety, meaning that my auditory nerve is damaged, particularly the hairs in the cochlea. I wear Phonak Audeo hearing aids, as well as using a Roger microphone.
Because I’ve worn hearing aids my whole life, I don’t really have one specific memory that stands out as being connected to them. I don’t have any experiences as a non-hearing aid user. I’ve always communicated verbally, so all of my memories are connected to my hearing aids in some way or another.
One such memory is the beginning of my participation in speech and debate. This is connected to my hearing loss because it’s a competition entirely dependent on verbal communication. It’s also a fantastic platform for breaking down stigmas around hearing loss and disability in general, due to the fact that participants are provided with space and a time to express themselves, along with all of their unique experiences.
Another memory of mine which is uniquely possible because of my hearing aids is learning to play the piano. I’ve been playing piano for around 9 years, and it has developed into yet another form of self-expression, as well as a way to entertain others and meet people with similar interests. These are two of my biggest passions, and they are both possible because of my hearing assistive technology.
One of the biggest obstacles associated with my hearing loss that I continue to deal with is communicating with others in day-to-day environments. This is particularly true in crowded and echoey locations. School cafeterias, auditoriums, classrooms with tiled floors, etc.
These places make communication difficult not because of volume but because of background noise. Large amounts of people (sometimes hundreds, depending on the location) all talk at the same time. That noise then echoes around the room, creating an overabundance of sound. This makes it difficult to focus on the things I actually want to hear.
Also, the actual person that I’m trying to talk to. Sometimes they speak too quickly or quietly, sometimes they mumble, and sometimes they cover their mouth when speaking.
That last part is especially significant because I read lips as a visual cue to help fill in what I don’t hear, which becomes even more important in noisy environments. The best advice I could give to other teens with hearing loss is this; advocate for yourself. If someone isn’t meeting your needs, let them know.
“The best advice I could give to other teens with hearing loss is this; advocate for yourself.”
I routinely ask people I’m conversing with to move their hand away from their mouth, stop mumbling, or whatever else the situation calls for. If you do this enough, the people closest to you will become aware of your needs and start to do these things instinctively.
Self-activism becomes even more important in an educational setting. If a teacher tries to seat you in the back of the classroom, tell them to put you somewhere else. If you use a microphone, and they forget to wear it, remind them right away. If these actions are intentional or become a pattern, talk to an administrator or counselor.
Of course, every student with hearing loss has different needs, and you will have to adjust your activism accordingly. Especially as you become more independent, dealing with hearing loss, as well as the stigmas associated with it, can seem daunting. But remember that hearing loss is one of the qualities that makes a person unique. Learn to cope with it, and embrace it.
“But remember that hearing loss is one of the qualities that makes a person unique.”
Written by Issac’s mom Diane Doty
Isaac was born six weeks early and spent several weeks in the NICU. It is hard to separate the news of his hearing loss from the NICU stay and his other health concerns in those early days. The news of his hearing loss came the same day he was finally released to come home. Learning about his hearing loss was surprising, and we were very concerned about what it would mean for him. We were unsure of what to think, how to proceed and where to go for answers. This was combined with concerns over his mobility and vision issues.
The first obstacle we had to overcome was finding out what our options were and what to do. We knew we should not delay in finding the right path. We were initially told that the test may not have been correct.
We did not rest on this idea and instead, we moved quickly to have his hearing tested again. Luckily, we were very near to a wonderful team of professionals who helped up learn some excellent options. We have faced many obstacles over the years. Access to sound, equal access to education and advocacy are the most important factors in how we dealt with obstacles.
Isaac is a wonderful advocate not only for himself but for others. It took many years for him to develop this level of confidence. It is not easy for a child to have to advocate for their rights to authority figures. His goal is to be an advocate and attorney focusing on civil rights.
“Isaac is a wonderful advocate not only for himself but for others.”
It can be tricky to find the right balance of doing what you have always done- advocate for your child and then to step back and let your child develop these skills on their own. You have to decide when problems are too large for your child to handle without your help. Let them take the lead.
See yourself as their advisor in advocacy and give them the support they need to be courageous and confident. Teens are often included in IEP and staffing meetings at schools and should be encouraged to prepare requests and topics of concern that they would like to talk about at accommodations meetings.
Did you see our last article about Phonak Teen Advisory Emmy? Read it now here!