Tuesday, 16 July 2019

Finding your peer group

Related imageI don't believe the UK HAS any of real note, we know the deaf have them, but HoH groups are as rare as hen's teeth and we don't join the deaf versions or feel they are peers.  We read the 'Deaf & HI' remit all the time but that's a UK hype, not reality.  It was hype introduced by the health systems to try to put all with hearing loss under one heading, and to promote inclusion, but the Deaf did not want to know about including the HoH or the hearing.  

We keep asking the systems and charities to stop promoting the lie they won't listen, and I thought it was just us with hearing loss?  The reality is peer support and inclusion is side-stepped by cultural and human rights laws, then, division becomes an acceptable norm and inclusion fails, diversity is just a word.  We believe if Americans are honest with themselves the same situation already exists there. I find the article a bit twee and fitting into the 'let's all sing together from the same hymn sheet' cheesy mould, it's sad really.  All that's missing is coca cola...

It is hard to understand hearing loss until you have lived it — the mental fatigue that comes from listening all day, the debilitating impact of background noise, the frustration of non-working accessibility equipment. These are things people with hearing loss face on a daily basis. People with typical hearing — well, they just hear. This is why it is so important for those of us with hearing loss to find a peer group of people like us. Not only is the camaraderie enjoyable, but we can also learn a lot from one another and we will feel less alone in our struggles. 

Like most people, I started my hearing loss journey alone. My father had hearing loss, but he never discussed it, instead living his adult life suffering with denial and stigma. He eventually isolated himself from his family and friends, leading a lonely life. When I first noticed my hearing loss in graduate school, I was terrified, assuming I was doomed to a life of solitude as well. 

For many years, I followed in my father’s footsteps, hiding my hearing loss from all but my closest friends, but once I had children, this all changed. Since my hearing loss is genetic, I worried that I may have passed it onto them. I didn’t want them to see me feeling embarrassed by my hearing loss or disrupting my life to hide it. I needed to set a better example of how to thrive despite hearing loss. 

To educate myself, I began volunteering at a local hearing loss non-profit organization. This helped me to meet other people with hearing loss and discover they were leading vibrant and fulfilling lives. They engaged in meaningful work and had active social calendars. I began to feel less alone and less afraid. 

My new hearing loss peers showed me there was nothing shameful about hearing loss. They taught me tips and tricks to lead a better life despite the challenges of hearing loss. They informed me how to seek out caption readers at the movies and on Broadway. They coached me how to advocate for myself with my friends and family and taught me what communication best practices to use so that I could hear my best in a variety of situations. Most importantly, I no longer felt alone with my hearing loss. I was now part of a community of people like me.