Hearing Disability – We Have to Change the Conversation

Just because you’re not like everyone else doesn’t mean you’re any less capable of doing anything they can do. In fact, because you’re different, you may even be better for it.

Earlier this week I was blessed to be asked to speak at a Disability Empowerment Day for kids with a hearing disability here in Minnesota. I spoke to two groups of middle and high school kids, and they were amazing.

Keeping It Honest About Living with Hearing Loss

With each group I promised them one thing – that I was going to keep it real and tell them not only the good stuff, but also the bad stuff too. Living with a disability is not all rainbows and unicorns, and we will never change the conversations around hearing loss and deafness if we don’t start being honest with ourselves.

I talked to them about a lot of things. About the stigma of hearing loss, hearing aids and cochlear implants. About relationships, dating and the awkward moments I’ve had when being kissed or the things that “normal”  hearing people don’t have to consider that we do – like on what date do you tell someone about your hearing loss?

I told them that we may be different, but that because of it, each of us has some unique gift from that. Having a hearing disability can be a hidden gift if it’s embraced and explored.  I said to them, “Never let your ears hold you back. I can’t hear much of anything but I still go #hike alone, #travel abroad to Greece and Ireland, #run half-marathons and have an amazing #journalism and #marketing career. Your ears are going to make you work harder. They are going to make you have to consider life in more creative ways, find accessible avenues where others don’t, and may at times, make life a little more risky. But, you cannot EVER let them be the reason you don’t go after something, quit something or give up. And most importantly, never let anyone tell you you can’t do X, Y, Z or shouldn’t do X, Y, Z because of you ears.”

Things Haven’t Changed As Much As We Think

And in each talk I asked questions. About if they’d felt ashamed, frustrated or embarrassed. I asked about issues with teachers, at school, with family, with friends and with sports. I asked them to share their own stories about all of the above, and so many did. I remember being their age, hiding from disability for years and years, and yet these amazing kids (11 years to 18 years) were raising their hands, opening up and sharing their most vulnerable moments with me.

Some told me about how their friends would use them as the brunt of jokes. One had an aunt who constantly yelled at him for not doing what she asked, but every time, he just couldn’t hear her ask in the first place – she asked from another room. I asked if he’d talked to her. He had, as well as his mom. The aunt still refuses to simply walk into the other room to ask face-to-face. Some told me about the difficulties with hearing on the football field through helmets, in team huddles, on the mat for wrestling, how soccer balls would make their cochlear implants fall off on the field, or how in the swimming pool with no hearing aids, it was impossible to hear the coach. [HINT: NEW video on this topic soon for kids and coaches!]

“Never mind”  – It’s Still A Painful Problem

Others shared about the painful use of the word “Never mind!” by family and friends, but sadly, mostly by family. One girl shared how her siblings left her out of inside jokes and refused to repeat things for her. Others soon chimed in after she shared to say they too constantly felt on the outside when with friends.

In short – the concept of feeling unworthy of someone’s effort hasn’t changed since I was their age. And I remember walking away worried, because if these kids keep hearing “Never mind!” we’re teaching them they’re unworthy, and eventually like I did, they will stop trying to communicate or interact with anybody altogether.

Technology Has Made Us Believe Hearing Loss Can Be “Fixed”

Hearing aids and cochlear implants are NOT glasses. I repeat. NOT glasses.

A hearing disability is not like fixing 20/20 vision. It’s more complicated and varies person-to-person. Technology has come so far today – with hearing aids, cochlear implants, mobile apps, looping systems, mobile wearable microphones and more – but it’s also unfortunately, not be talked about the right way. And what I mean by that is that the innovation of hearing technology in the last five years alone has also consequently made people believe that once those of with hearing loss put on our aids or implants that we are suddenly “normal.”

No! No  hearing technology does this. Nobody can ever once again have “normal” hearing or operate at the same way as “normal”-hearing people. Even with my hearing aids, I still need to read lips. I still need to use captions on videos. The kids, many said the same. Hearing loss impacts people in different ways, and how our technologies work for us is unique too. And we have to start talking about the fact that with hearing loss, technology is NOT a cure-all. It is it absolutely a worthwhile life-enhancer that improves our ability to hear and understand, but that’s the key word – IMPROVES.

We need to start having conversations with our friends, family, partners, employers and colleagues that help them to understand that while hearing technology helps us hear better, we still may need help in other ways. We may still need the looping system, the microphone, the captions or to lip-read. And you know what, all of these are simple things other people around us can help us with. I cried after my talks because two girls had told me their teachers refused to use a mobile microphone or add captions on a video. I was livid. It takes no more than 3 seconds to sync a mobile microphone device up to hearing aids. It takes less than a second to click the Captions ON option on a video (or hey, pick a video with captions in the first place!).

Hearing Disability Conversations Need to Change

I could write pages on this, but I won’t because the point of this is that we have got to change the conversation. [And you can watch the full video ;)]

The conversation around hearing technology – Technology has done amazing things for those with hearing loss, but it’s also gotten so good it’s fooled friends, family, teachers and others into believing that aids or implants “fix” everything. They don’t. And we have to start talking more about what that means or we will never rid the world of stigma.

The conversation about understanding what hearing loss really means – We aren’t any less capable, intelligent or driven than those with “normal” hearing, but

The conversation about how to be someone with a  hearing disability – at every age – and how to LIVE your life with it! – Small kids, teenagers, adults, teachers, parents, etc. It’s time to start being honest with these groups, and also, with ourselves.

It’s time to start talking to each other without all the fluff. It’s time to stop painting all the rainbows, and start showing the thunderstorms that create them.

 

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