I remember the first moment I saw her. It was hard not to notice her as she mingled at coffee break with other conference attendees who were mostly seniors – she was holding a baby. As she walked towards me, I didn’t know that an amazing woman was about to give me two gifts – peace of mind and friendship.
It was May of 1995, my first Canadian Hard of Hearing Association (CHHA) conference. I was also pregnant with my first and only child.
All those firsts melded into a life-changing year – although that term sounds too understated, too trendy. Going gluten-free or getting a tattoo are also considered life-changing. But really, how do they compare to this: having a baby at 41, a Damascene conversion in attitude towards my own hearing loss, and embarking on a passionate new career of advocacy. There’s no turning back from those. The Hearing Husband gets credit for the first one, but Cindy Gordon was an inspiration for the second two.
In a talk that seemed to last for hours, but was perhaps only a few minutes, this hard of hearing mother of four calmed my fears about how hearing loss might interfere with being a good mother, with keeping my baby safe.
Cindy is a sparkplug advocate who owns a successful not-for-profit agency providing support for people with hearing loss. She is an award-winning volunteer, both in her hometown of Edmonton, Alberta and through her work with the Canadian Hard of Hearing Association. As part of an occasional series profiling admirable activists such as Betty Coombs, Birgit Meyer and Jonathan Nicoll, I recently asked Cindy a few more questions.
Cindy, tell us about your hearing loss.
It most likely came from having chicken pox as a baby, but I was 13 before being diagnosed with a bilateral, severe sensorineural loss. I wore hearing aids – reluctantly and sporadically – from Grade 7 until graduation. It was an embarrassment for me and I told only two teachers in high school and just a few friends. I kept it hidden until I went to college, where I finally became open about my hearing loss and my hearing aids, which I wore regularly. I had no other accommodation while in college.
What can you tell us about family life with hearing loss?
There have always been ups and down, but the birth of my first child was particularly difficult. I had to remove my hearing aids, and afterwards the staff couldn’t find them! In my son’s first year, on top of all the usual worries of new motherhood, I struggled at not hearing those baby sounds a mom wants to hear. My husband helped me accept my hearing loss – it didn’t matter to him, or embarrass him. He even took my first sign language course with me. My family has been my rock through the years, even though my hearing loss work means a great deal of time away from them.
When did you become involved in hearing loss advocacy?
Over 25 years ago, I was becoming increasingly frustrated in work and social settings, because there was no equality for those who couldn’t hear well. One employer told me flatly they would never advance me because of it. I was young and lacked courage; the easiest thing was to quit. I never let that happen again. I decided that, for change to happen, I had to ‘ripple the waves’ and that’s when my journey began.
It was empowering to attend my first CHHA conference and meet like-minded persons with similar goals. I helped form a CHHA branch in Edmonton and soon after, I changed my career from working with persons with disabilities to working solely with hard of hearing people.
I’m passionate about my workshop called The Third Ear, which I wish had been available to me years ago. People with hearing loss and their communication partners attend the session together to learn about hearing loss, hearing aids, and communication and coping strategies. Most importantly, they meet others who are like them, with whom they can share feelings and know they are not alone. I have offered these workshops for more than 15 years now and plan to keep on doing it.
When did you get a cochlear implant – and why?
This March is my third anniversary of being implanted. My hearing loss had steadily progressed, losing about 10 dB with each pregnancy. With four children, that’s a lot of hearing loss, so of course I blame them! And as they got older and brought significant others into the family, I realized how much more I needed and wanted to hear. I earn my living doing workshops, and it’s important to be able to hear the participants. My hearing was dropping and my speech was changing. With my last pair of hearing aids, it became obvious what the next step would be. My CI has been a great success and my family is astonished at what I can now hear.
What are you most proud of in your hearing loss life?
I’m proud that I fully accept my hearing loss. Even though it’s considered a disability, I can accomplish anything, although I may do some things differently. So I prefer the term ‘differently abled’ to ‘disabled’. I’m also proud about helping to influence accessibility changes in our city and government, but most particularly with hard of hearing people themselves. I am never prouder than when I’ve helped someone come to terms with their loss and begin their own journey.
What are you still fighting for?
A lot – there’s still so much to change. A top priority for me is hearing loss prevention – people need to understand the permanent damage noise can cause. Secondly, society has a long way to go before it’s fully accessible to people with hearing loss. Finally, the healthcare system must rise to meet the needs of patients with hearing loss.
What are you grateful for?
Many things – the ability to laugh, be comfortable singing my own lyrics to songs, my family, technology and my hearing loss friends.
And that’s my friend Cindy Gordon – my first hearing loss hero.