Stigma and Hearing Loss.


Over the past year, I have been growing my hair.  I have done this for a couple for reasons.  First, I am still in the midst of a mid-life crises, but in a good way.  I am celebrating the fact that I still have a full head of hair at 47, and I am showing if off it a silly display of vanity.  Second, it looks good when I am playing in my band (its great for head banging).  But thirdly, I must confess, is that it is helping to conceal my hearing devices.  The latter was not one of the initial motivating reasons to grow my mop, but I have noticed a change in the way people look at me now that the devices are less visible.

People tell me I look like Matthew McConaughey's chubby, but sexy, deaf brother.

So what is the issue here?  Obviously there is still a stigma associated with hearing loss.  Lets look at the definitions of this word “stigma”.  The Merriam Webster on-line dictionary defines stigma as “a mark of shame or discredit” and “an identifying mark or characteristic; specifically : a specific diagnostic sign of a disease”.

So do I see using a hearing aid, a cochlear implant or an FM system as a sign of shame or discredit?  Of course not.  In fact Canadians, Americans, Europeans, Australians, and others who live in the developed world should realize how fortunate we are to be living in a society in which our either our incomes or social programs can afford to provide us with devices that can help us hear again.  World wide, there are likely millions of individuals with hearing loss who cannot afford the luxury of better hearing.

Are using hearing devices a specific diagnostic sign of a disease?  Well, maybe.  It certainly does give away the fact that I do have a hearing loss.  But as I will point out later, there are other signs that indicate the presence of a hearing loss, namely, one’s communication abilities.

I think that for many years, hearing aid companies did not help to diminish the perceived  stigma associated with hearing devices.  They constantly tried to advertise “invisible” hearing aids.  One could even order hearing aids that were delivered to your home in a “plain brown envelop”.  What’s up with that?  Are we ordering porn here? These kinds of marketing practices only served to reinforce the notion that hearing loss is shameful.

Frankly, I think most of the notion of hearing aids being stigmatizing on an individual is bullshit.  The ultimate proof of that comes to me every year around Christmas time in which I go to lots of Holiday parties.  What I am about to describe to you has happened to me so many times, I wish had a nickel for every time it occurred.

The scene is set as follows.  I have my refreshing beverage in my right hand.  In my left hand is my Phonak SmartLink+ FM transmitter.  I am happily conversing away with lots of folks, and inevitably, someone will ask about it.  The conversation goes something like this:

Other Person: “Hey, what’s that thing you got there?”

Me: “Well, that’s my FM transmitter”

Other Person: “Oh yeah, so what does it do?

Me: “”It picks up your voice and helps block out the background noise.  so I can hear you a lot better in this noisy party”

Other Person: ‘Wow, cool.  so how do you hear with it?”

Me: “Well, it transmits via FM radio waves to little receivers attached to my cochlear implant and my hearing aid”

Other Person: “Wow, thats so cool.  You know my Dad should get one of those.  His hearing is way worse that yours”

Me:  “Really?  Wow. His hearing is worse than mine?  Is he deaf?”

Other Person: “No, no , no.  He’s not deaf.  Probably just hearing loss due to age.  But he just completely falls apart in social gatherings.  He totally avoids them.  Constantly saying “what?” all the time.  Drives us all crazy, especially my Mom.  He won’t even go to things like this anymore.”

Me:  “Does he wear a hearing aid.”

Other Person:  “No, he doesn’t want anyone to know he has a hearing loss.”

So what do I conclude from this exchange?

  1. People judge the amount of “disability” you on the basis of your behavior and your ability to function, not just on the presence of hearing devices.
  2. Because I seem to function better in a noisy environment with my FM system, hearing aid, and cochlear implant, I am perceived as having LESS of a hearing loss than a silly old coot with presbycusis (hearing loss due to age) who won’t even wear a hearing aid.
  3. Often the biggest barrier to better communication is the person with hearing loss themselves.  They erroneously think others won’t notice their hearing loss if they do not wear a hearing aid or use an FM system.  The fact is that they are constantly having communication breakdowns and this is extremely obvious to everyone.

But this brings me back to the hair thing.  The cochlear implant is bigger than a hearing aid, so folks do stare a bit.  It can get annoying.  So, I grew my hair a bit and it covers it up more.  So shoot me for wanting to look a bit cooler.  But I can assure you, I would never trade my ability to function for the sake of cosmetics.  I know that I would be perceived far worse if I kept saying “what, huh, pardon me”.  The hearing devices and FM system help me function and decrease negative perceptions.

Advertisements

11 thoughts on “Stigma and Hearing Loss.

  1. Very well said, Peter. You are so open and honest about your hearing loss. I applaud you for who you are and taking the time to share your stories. Shame on those who continue to add the inapprpriate stigma to those who use assistive technology to hear, in a hearing world.

  2. I love your blog and have told a few patients now to take a look at it. You are quite a writer – a man of many talents!

  3. Good post! Although, I do still see ads playing off the stigma, and fears.

    I hid my hearing-aids as a teen and well into my 20’s. Lots of ppl thought i spoke funny. Some even thought i had a Longisland dialect. Whatever that is. Others thought i had a speech impediment. It was easier to just cut my hair short, stop hiding it.

    • Hey Jimm. There’s lots of arguments either way. Whatever works for you, I respect that. But what we don’t want to do is sacrifice performance for cosmetics. Cheers!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s