It was soon evident they amplified what I did hear and not what I didn’t, as the complaints from my friends and family were even more frequent as they couldn’t understand why the aids didn’t “cure” me.
For today’s testimonial, Noelle Sinclair shares her life story of having hearing loss, finding treatment, experiencing discrimination, frustration while chasing her dream career in broadcasting media.
I started to lose my hearing when I was in my final year of high school. No one really knew why. I was sent to local hearing doctors then to specialists in Toronto, but no one could pinpoint what exactly happened. There were no solutions offered, just to keep coming back for regular testing. Going back for regular testing as a student graduating high school, going off to university for the first time was not something that was high on the priority list. In retrospect, it should have been the top priority.
My hearing loss led me to have to leave University, seek smaller classrooms where I could hear better so I switched to college. My chosen career field was broadcast journalism, which I was able to pursue well during the first few years of my hearing loss. Not sure if it was the headphones or studio sound, or an ability to turn the volume up very loud, but I somehow coped. I started to teach myself to read lips. I generally did ok for a number of years.
About ten years into my hearing loss, I became a single mom. The loss was becoming more obvious to people around me, who would comment. There were times where I would get so sick of asking people to repeat themselves, I would just nod in agreement. So many times, I would receive strange looks, as I had clearly agreed to something I would not normally have. I stopped using phones, I started relying on my young daughter to be my ears. I started avoiding social situations, and for me that was a drastic change as I was always an extrovert.
As time progressed, my employer had started to express some concern about my hearing loss and suggested I seek help. Hearing aids were the first attempt at trying to improve what was quickly becoming an impossible situation. A half hour appointment was made at the rehabilitation hearing clinic for me, I laughed and said oh I’m not going to take a half hour. It was an hour and a half later the audiologist emerged and said “I don’t know how you’ve gotten through life this far like this.” I was fitted with BTE hearing aids, the cost was beyond my means at the time as a single mom, but I got on a payment plan and started using them. It was soon evident they amplified what I did hear and not what I didn’t, as the complaints from my friends and family were even more frequent as they couldn’t understand why the aids didn’t “cure” me. Eventually I stopped using them completely and muddled on reading lips and coping as best as I could.
I eventually left radio news as I worried about my own accountability for delivering the proper facts. I never made any errors in my job, but I knew a time would likely come where my hearing could compromise my professional integrity. So I made the difficult decision to quit and move on to a job with less requirements on perfect hearing. However, after a few years in my next position it was becoming more and more challenging to use phones and various accents of people were becoming almost impossible to understand. I relied heavily on other people to help me hear, that I sought another attempt at hearing aids.
This time I went to a private clinic, again my audiogram showed significant bilateral loss. Hearing aids were attempted again, and again failed miserably. I was almost in a world of silence by this point and no one ever suggested cochlear implants to me. And this is a point that should be made clear, private clinics are not always acting in the best interest of their clients. Anyone reading my audiogram knew full well, hearing aids wouldn’t help me. These private clinics are sometimes operated by Hearing Instrument Practitioners (HIPS) and not registered audiologists. These HIPS tend to put profits before people and sell unsuspecting people like me expensive devices that don’t have a hope in hell of improving the client’s life.
By the time I was 45, this is now more than 25 years after I first started losing my hearing, I had become basically unemployable. My doctor suggested I get another test, but this time, it was for use to apply for CPP disability. This audiogram showed I had about 6 percent hearing left in both ears. This audiologist however, suggested the CI program and while I was applying for CPP disability, I started the process with an ENT to be referred to the CI program at Sunnybrook hospital in Toronto.
I was denied CPP disability as they claimed I was not significant hearing loss nor prolonged. I didn’t fight it or appeal the decision as I had been accepted and added to the wait list for a CI. However, my wait was to be a year and a half. During this time, I started to appeal the CPP disability decision. It was such a drawn out, red tape, annoying process I eventually gave up and luckily was given a chance to get off the waitlist 8 months sooner due to a cancellation. But the government needs to seriously explain its rationale for denying fully deaf people CPP. I just don’t think I’ll ever understand that one.
I was implanted in May of 2014, activated in June of 2014 and in July of 2014 I received an above 80 per cent mark on a hearing test I had failed so miserably in the past. My success with the CI was immediate and incredible. Six months after my implant, I went back to radio news and was enjoying it right up until February of this year, when due to the pandemic and cut backs Bell Media decided to axe hundreds of jobs and mine was one of them.
My implant was life changing for me, I could now talk on a phone, I could use a drive thru, I could hear people when my back was turned, I could hear people speak in the backseat of my car, I could hear bells in my car, beeps on microwaves. I soon learned that over the past 25 years, a lot of things that never made sounds 20 years ago suddenly do. My life not only changed in terms of employability; I was now able to go back to social situations that I had started to avoid as I just couldn’t hear people.
My hearing is not perfect, but it is vastly improved. I have since learned from others with CI’s that my result is not indicative of everyone’s experience. I am an above average result I am told. I also recently participated in a lecture for the UBC audiology program and the professor was shocked at how well I coped on a ZOOM meeting with only one CI. He was further amazed that I worked in broadcasting.
One thing the pandemic has shown me is that despite the success of my CI I do still rely on lip reading. As soon as everyone masked up, I started to have some difficulty understanding people. Add the shields and plexi-glass barriers and it is very challenging to hear people. And of course, there are just some people who speak too fast and don’t enunciate. Sometimes all it takes is just someone to slow the speed of their talk and enunciate every consonant and vowel.
Some of the biggest barriers I faced in my years of hearing loss would be the lack of understanding of most people to appreciate hearing loss. When I would ask people to repeat themselves and speak slower, they assumed I was dumb. Many wouldn’t even bother repeating and would just say “never mind.” If I had a dime for every time someone refused to repeat or simply disregarded me, I’d have been able to buy a second CI for myself. Some people never even think that the reason a person isn’t responding is not because they simply can’t hear you. It’s an invisible disability, and sometimes I wish I had a sign on my back that said, deaf or hearing impaired.
“There is a distinct lack of help for the hearing impaired by all levels of government. We always see wheelchair accessibility and concessions made for those with other obvious disabilities, but technology advances to help those of us who are hearing impaired are rarely available.”
Could it be the cost of technology? Maybe. But even small things like window coverings, carpet or mats, things that help absorb ambient sounds can make a huge difference to people who have CI’s or hearing aids. These things seem to be rarely considered in building spaces.
I would also criticize the government CPP disability program. I was deaf, completely deaf and told I couldn’t get disability support. That is just wrong. I also wish the government would fund more for CI’s as I can only imagine the impact a second CI would make on my life. OHIP covers only a certain number of first CI’s a year, and even less for second CI’s. I may have even missed a chance to have significantly improved hearing with a second implant as some doctors now speculate a second implant may be useless as I’ve been deaf in my remaining ear for so long now the cochlea may not respond to stimulation.
I can only imagine what life must be like for people who are deaf and don’t have the benefit of a hearing device or ability to have their hearing restored with a CI. I was absolutely thrilled to see that sign language is making its way into our school system. My children when they get to high school plan to take the course and I plan to take one at Niagara College so that we can all learn it together. To me every government office at every level should have someone that can provide that service. Just like we make government officials be bilingual, communicating with the deaf or hearing impaired should be available too.
I still face challenges and am denied things I want to do because of my hearing loss. A recent example is the COVID vaccination clinics. I wanted to give back to my community by being a volunteer at the vaccination clinics in my city. However, the masking requirements of everyone meant my communication skills would be compromised and it would not be suitable for me, so I was denied the opportunity. There are some jobs I would like to apply for but feel I can’t. How does one argue you have exceptional communication skills when you are deaf without batteries.
The technology advances every year, and while I’d love to upgrade and get in on all the new Bluetooth capabilities the government funding $1000 of hearing devices for me, is nice but a far cry from the total. To get an upgrade on my devices from 2014 will cost me around 10 thousand dollars. That’s more than a used car. Most benefit plans do not account for costs like that for hearing aids, many plans don’t even cover hearing devices. Especially when you’re dealing with disposable batteries in some cases. Hearing loss is a very expensive disability to cope with when you want to remain a contributing member of society.
To hear more of Noelle’s story as well as her advocacy for accessibility in society, listen to this webinar where she and Lee Pigeau discuss removing barriers in public spaces.