Tuesday, 16 May 2017

#DeafAwarenessWeek - My Story

This week is Deaf Awareness Week. It's not something I often talk about, but I have hearing loss so I wanted to talk about my own experience with partial deafness and how you can be a better friend to someone with hearing loss.


 I've had hearing loss since birth. No one knew till I was at primary school and the school did the standard hearing tests they do on all students and I failed them all. My parents were called and after some exploring it was discovered that I had a 'normal' right ear, and hearing loss in my left ear. At the time my hearing loss was considered moderate, over time it is now considered moderate to severe. My right ear now has some loss but is still just about within the 'normal' range. With my left ear I can hear no high or low pitch sounds, and have less hearing across the more central pitch range.


I didn't get my first hearing aid till I was 21 years old. I sort of fell through the cracks a bit in terms of my hearing being tested regularly, and mistakes were made. When I was 18 I was sent for MRI's and checked to see if I was a suitable candidate for a cochlear implant, I am not. It wasn't until 3 years later when someone asked to service my hearing aid that I realised that the audiology department I was under mistakenly thought I'd been given a hearing aid before. Once this mistake was realised, the process began to get me one.

The first time I wore my hearing aid, I was amazed at how loud the world was. I was quite horrified at times actually. In the car with the window down I was baffled to hear a bird when we were parked at traffic lights, and slightly traumatised to discover that when your stomach rumbles it makes a sound that other people can hear. I'd always thought it was a feeling! I was so embarrassed. I cried the first time I held my ear to my cat and heard him purr properly, it was the most wonderful sound in the world. I realised that I'd never been able to hear the bass in songs I loved, and that I missed most of the drum beats. I found the sound of paper being shuffled sent shivers down my spine like people say nails on a chalkboard does for them. The first time I flushed a toilet I literally leapt in the air at how loud it was! I spent a lot of time asking people to be quiet, I was aghast at how loudly I spoke, and background noise became even harder to deal with than it had before.

A post shared by Kitty Morris (@kittyramblesalot) on

I'm 29 now, and I haven't worn my hearing aid in well over a year. There are many reasons people with hearing loss don't wear hearing aids. They aren't the most comfortable thing to be quite honest, they rub and shift around, and your brain takes a long time to learn how to process the new sounds. The world suddenly being so loud can almost feel like drowning, it's scary and overwhelming. Not all people with deafness or hearing loss want to be hearing, we have our own version of normal and our deafness does not stop us from living full amazing lives. For me personally, I suffer from a condition called otitis externa as well as eczema, both of which affect my inner ear. My hearing aid exacerbates them and it can be really painful and uncomfortable, so I don't wear it. People with hearing loss or deafness are not missing out because of our hearing, we just experience things in different ways. There is a belief in the deaf community that deafness isn't being deficient, it's just a difference. Many view it not as a disability, but as a whole cultural identity. Please never assume that someone who has deafness will want to be hearing, not everyone does and that's OK too. Some of us wear hearing aids, and some of us don't.

Infographic by Action on Hearing Loss

When it comes to being a good friend to someone with hearing loss, there are things you can do, and I love this infographic created by Action on Hearing Loss. I spent many years wondering why people would tell me when they met me that they thought I was a bitch, or that I was better than them, until they revealed that it was because I didn't seem to join in conversations in groups or ignored people when they spoke to me. I've had to explain many times that this isn't something I choose to do, and is because of my hearing loss, not me being rude! Conversations can be hard to follow in a group because when you need to lip read to fill in the gaps that you can't hear, a group jumps around too much to keep up. When you go out with as a group, consider how you can help your friend be included properly, even how you sit can help. As I have such substantial loss in my left ear, I always ask to sit on one end of the table in a restaurant, ideally right on the end so I'm facing in towards every one, or if not with my right ear facing in to the action. It gives me a chance at least!

Using your mouth to really form words can help, mumbling or putting a hand over your mouth is really hard for people with hearing loss. I absolutely love people who enunciate well because I can see the words they are making with the shape of their mouths and it helps so much. You don't need to exaggerate, but don't mumble. You don't need to speak loudly, just clearly.

One of the biggest things that has bothered me for many years, is that often when I ask someone to repeat themselves, that they actually do repeat themselves, and never ever say 'it doesn't matter', or 'never mind' to me. Nothing makes me feel more worthless than someone who decides I'm not worth repeating themselves for. When you give up on helping us hear you, you give up on us and dismiss us. When you say 'it doesn't matter', it feels like you are saying 'you don't matter'.


Hearing loss and deafness aren't limited to the elderly, and you may be surprised by those around you who have it but don't talk about it. It affects people of every age and from every walk of life. As a person with partial deafness I am immensely privileged and often 'pass' as a hearing person in my life. When I mention my hearing loss I'm often surprised by those around me who then tell me they have similar, so I'd love to see more people talking about their own experiences this Deaf Awareness Week.

I hope this has been informative for you, and I appreciate you if you read all the way to the end!

Much love,
Kitty xxx


27 comments:

  1. I have degenerative hearing loss - which means I'm slowly going deaf. My Dad has it too, and he's only recently been given hearing aids, which means I have a while to wait. The biggest bugbear for me is whispering, I have to filter out background noise as it is with only one fully functioning ear so please don't whisper.

    ReplyDelete
    Replies
    1. yes whispering drives me totally wild, it's so hard to cope with!

      Delete
  2. Thanks so much, this was so interesting to read. That I know of, I don't have any friends with hearing loss so I haven't come across much of this information before. I was particulalry interested to read the bit about never saying it doesn't matter instead of repeating a sentence. Note taken. Mich x

    ReplyDelete
  3. Oh wow really love that your hearing aid is purple. I have some hearing loss in my left ear which has also been present since I was very young. My mother has no hearing in one ear

    Laura x

    ReplyDelete
    Replies
    1. They don't traditionally offer the colourful ones to adults but the first time I went for mine I had purple hair and the audiologist offered me a colourful one, so I've always had them since then! x

      Delete
  4. As someone who can hear, reading about hearing loss from your perspective is enlightening. I never realised wearing a hearing aid and hearing sounds you couldn't before can be loud and overwhelming. A really useful infographic too

    ReplyDelete
  5. I never knew this about you so I read your story with interest!
    I deal with several deaf customers so i started learning Sign language so I could communicate better

    ReplyDelete
    Replies
    1. thank you lovely! Sign language is on my list of things to learn because all I know how to say is 'sorry' and some swears!

      Delete
  6. I can't believe it took so long for them to give you a hearing aid, I can't even imagine how strange it must have been hearing everything for the first time x

    ReplyDelete
    Replies
    1. it was a very bizarre experience! x

      Delete
  7. We definitely shouldn't take our hearing for granted. It is really eye opening to hear what it feels like to have hearing loss and the implications of wearing a hearing aid.

    ReplyDelete
  8. My son has hearing loss in his right ear. He has a condition called microtia where his ear is deformed. He wears a baha hearing aid. I'm not sure if you've heard of that or not. I didn't know this week was deaf awareness week. That is so awesome that there is a week devotes to awareness for the deaf and hard of hearing. I feel like it should be a whole month!

    ReplyDelete
    Replies
    1. I have not heard of that type of hearing aid so I'll have to look that up! I think a whole month would be awesome too

      Delete
  9. Also wanted to add that I have written about my son's ear condition on my blog so feel free to search my older posts. :)

    ReplyDelete
  10. It must have been so strange to be able to hear how loud the world is once they (finally!) gave you an aid. My nan is deaf and gave up wearing her aids a few years ago too. She manages with out them and says she's happy not hearing absolutely everything. I love the infographic, I find it frustrating when I see how slowly people talk to my nan so I can't imagine how annoying it is when it's to you.

    ReplyDelete
    Replies
    1. It just feels condescending, people mean well but it makes it harder :)

      Delete
  11. I suffered deafness in one eye due to a blockage when I was a child, this was put right by surgery, so I was really interested to read your post. I think the not repeating must be so frustrating, and frankly so rude too.

    ReplyDelete
    Replies
    1. my little brother was very deaf when he was born and it was completely repaired with an operation, I think it's why mine wasn't picked up on in the same way! It's definitely something that's taught me who really cares about me

      Delete
  12. What an interesting and honest post. My brother is completely deaf in one year and also only found out about it later in life. But he was always well acclimatized and so never sought and aids. But there certainly are allowances that need to be made.
    Www.curvesandcurl.co.uk

    ReplyDelete
    Replies
    1. It's so bizarre how many of us don't know to begin with! I miss wearing mine, but at the same time I find them hard so I don't mind too much xx

      Delete
  13. Thank you for sharing your story, it's so interesting, and useful, to read about your personal experience with deafness.

    ReplyDelete
  14. I never even thought that suddenly being able to hear all the sounds of the world could be so overwhelming. It's something that never crossed my mind. I love that you're so open about it.

    ReplyDelete