A friend asked me earlier this week, “What does being deaf mean to you?”
Honestly? I replied with a series of ‘cant’s’.
It wouldn’t be too strong to say I hate it, and if someone had turned round to me and said “Hey, I made this magical potion thing that will restore all your hearing and make you a conversational genius”, I would probably bite their arm off.
“Jeez, you should be proud of being deaf! You can communicate really well, you can sign AND speak”, people have said to me throughout my life when we’ve discussed my deafness.
I used to sit there and count what I can’t do:
I can’t hear (obviously) but I also can’t join in group conversations without talking out of turn, talking over someone, laughing inappropriately or creating awkward silences where someone asks me a question and I just nod my head and smile.
Occasionally I go to a hobby group and recently, we were discussing houses and mortgages.
Everyone was laughing, so of course I laughed along thinking,” I’ll just ask my friend after we leave, how funny can mortgages be really?”
All at once, it went quiet and everyone looked at me.
It turned out everyone stopped laughing because this woman disclosed how she only got her house because her mother died of lung cancer. Guess who carried on laughing. Guess who this woman doesn’t talk to anymore.
My current default setting is to just smile and murmur noncommittally.
This makes everyone think I can actually hear them and I’m just a flake who doesn’t know if they want milk or cream. That’s mostly in cafes, not like in Homebase or something.
Then it’s, “Where are the hammers/hoses/candlesticks” and then I just walk in the opposite direction to what they’ve said and moan they’ve given me dodgy directions. Thanks, Homebase. I found the screws eventually.
Deaf Identity. This means nothing to me. Nor does ‘Hearing Identity’.
So, where do I fit in? The question audiologists can’t answer for me. That’s what I am trying to find for myself.
Sometimes I’ll say, “What did you say? I’m profoundly deaf” and that’s when the head-tilting, patronising looks start, the “Oh, you cope really well” comments, and the random hand gestures that are mostly well-meaning as they try to help me keep up with conversation but manage to make me feel like a dependent child.
I went to the dentist a few months ago and explained that I was deaf and needed to lip-read. “Okay,” she said, lifting her mask over face and covering her lips. I took an interpreter after that.
Sometimes I feel like a deaf person on the inside and a hearing person on the outside, and a total pariah to both worlds.
Deaf people will say to me, “Are you deaf or hearing?” and seem wholly surprised when I say “I’m profoundly deaf”. “You don’t sign very well”, “Why don’t you use BSL?” Well. I don’t really have a good answer for those questions, so I blush, dribble and then wave my hands around in an embarrassing mimicry of sign.
Then a situation will crop up where hearing people ask me to repeat the sentence again, and again, and wonder why I can’t pronounce some really simple word that EVERYONE should know how to say, and again I sort of wave my hands around, dribble and squeak an approximation of English.
Especially at work, when I’ve had people walk off because neither of us can understand each other. That’s actually just rude really.
I think more people struggle with their D/deaf identity than is known; it is a thing that needs to take time and patience to understand and form. When a person is a natural introvert or lacking in confidence and self-esteem like I am, it takes a lot to say, “HEY! I’m deaf, slow down, face me and talk normally.”
Writing this has made me realise, I am getting there. I don’t actually hate being deaf. I might struggle with things that hold me back sometimes and I definitely have a propensity for focusing on the negatives (can you tell?) but I do have my deaf identity, it is interwoven with growing up in both worlds, going to mainstream school and having BSL friends, losing most of my residual hearing, marrying a hearing man and having hearing children whilst using a mash of BSL and SSE with them.
The choices of trying to decide whether to have a cochlear implant or not, to continue to use hearing aids or not, or to use total communication at home. Looking at the bright side of being deaf, and learning to accept that I might not always like being deaf, but that’s okay.
I really struggle to hear my daughter talk; she signs, but by virtue of being in a mostly hearing family, tends to speak. I have to ask my husband what she is saying sometimes, and this can be quite deflating.
But then I realise I can miss out on most of the tantrums, the whining, the wonderfully repetitive questions (why is that man there? Why? Why?). The rest of the time we communicate just fine.
Sometimes I find working in a customer-facing role too challenging, with having to speak to and lip-read new people constantly but a couple of years ago I got presented with an accolade for my customer service skills, so I can’t be all-out dreadful.
I might always be the last person to find out what happened after the event, but it does give me some funny stories to tell.
My husband and I, two kids and the dog went to a little café last week. We sat outside drinking a decadent hot chocolate, replete with cream and marshmallows when an elderly couple stood less than two feet from our table.
The man started pointing from the dog to our daughter, whilst the woman just stared at the baby. My husband started laughing, and thinking they were talking to us and had made a joke, I laughed along.
They finally moved on, so I asked my husband what they had been saying. Turns out, they weren’t saying anything and he had got the giggles, and I just laughed in their face.
“What does being deaf mean to you?” For me, it means I’ll always find a way of communicating, a nod and a laugh goes a long way.
It means I can be part of both worlds and experience the richer sides of each. I am proud of how far I’ve come and what my identity is now.
What does it mean to you?
Kim Webster born moderately deaf, and went profoundly deaf in her teens. She’s a mother of two young children who works at Derby County Football Club part time. She enjoys reading, baking programmes and wine.
The Limping Chicken is the UK’s deaf blogs and news website, and is the world’s 6th most popular disability blog.
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donaldo of the wasatch
September 10, 2014
So an aberration to both venues. Understood! Prelingual deaf, then bilateral hearing aids, and now the bilateral CI’s. If you want to hear, those CI suckers will do wonders. But the CI is like buying a new car – you still have to drive it. Or like tools, you still have to push, turn, pull, lift, pry or pull the trigger to get an outcome. It is horribly hard work and most of it without an instruction manual. You have to write your own instruction manual. Each person is a one off copy.
I wonder how many of us say we are are profoundly deaf and live down to the expectation others have? Oh, 63 years old. So I have worn devices for 59 years. Wore them when the medical professionals said they would be useless, Wore 2 when everyone said only 1 is needed. I consider myself smarter and better for the sojourn, but then I “shot for the moon.” Got shot down more than once and aimed again for the moon and I see my golden years as my best years and my greatest contributions. Appreciate the courageous ones that speak out rather than settle for less than they can be.
And no one can tell anyone about how to improve the situations better than us. We are the experts. If it is to be it is up to me. We have stumbling blocks. Make them into stepping stones.
Go for the opportunities! And never let any type of low performer suggest to you that you cannot aim high and get those outcomes.
Suzanne
September 10, 2014
Wow I can relate to that a lot.
shonajh
September 10, 2014
Hi Kim thanks for writing this , I think you are very brave & represent how a lot of people feel. I agree about all the communication stuff it is so hard at times. Luckily I married someone who is a great repeater of stories & events that have happened in our life & over the years I have finally understood what really went on when we were away in groups sailing or whatever…I had always got the wrong end of the stick because I did not hear it the first few times ! The number of times I had misconstrued what was going on when everyone was having a laugh or a joke ! But I would not swap it for anything because that is me …and I might have got divorced if i had normal hearing from getting fed up listening to the ‘ repeats’ .lol. My only regret is that we did not have blogs & Facebook and people like yourself sharing how you feel years ago because if we had I think I may have been a little braver. So thanks for this today.
Cathy Alexandeŕ
September 10, 2014
Oh boy! Did your blog make me smile! I do suspect there are a great many people, including myself, who are entrapped between the deaf and hearing worlds.
Like you, I have never found “deaf identity” to mean anything, but “hearing identity” doesnt mean anything either. Its a twilight world that the likes of you and me occupy, Kim.
Although, unlike yourself, I do use and understand BSL. It has itself been a saving grace, since I would never have got through any of my College or University courses without it!
Even so making use of BSL does not confirm a “deaf identity” as I speak also and often it is difficult to make people realise or believe that Iam profoundly deaf. It is not unusual to have people saying: “you don’t talk like a deaf person” or “you lipread well eh!” They dont realise half of it can be guesswork!!
It is difficult if not impossible to fit into hearing groups: speech is too fast, people cannot always be facing you, not everyone has patience to repeat n repeat, and they will say, “oh never mind its not important!”
The life of profoundly deaf people with speech confounds people, but they dont make life any easier, in fact its more problematic because they keep forgetting you are profoundly deaf because you are talking, just like them!
It would be great to join book clubs and knitting or craft groups, but it is absolutely impossible to do so due to the communication barrier, so I cannot adhere to a hearing identity.
The deaf world mainly consist of pub nights and deaf clubs with nothing but bingo running!!! So not much of a deaf identity there!!
Its a delicate balancing act to live between the two, but I have faith in the fact that something better than CI’s will be coming up so I will possibly be able to say, at least, I can join in hearing groups with maybe a HOH identity!!
pennybsl
September 10, 2014
We look forward to the day when you feel able to say, I am DEAF – full stop – take it or leave it, that is ME.
You are in a journey experienced by many, especially in a mainly hearing world, and you accept the bloopers caused by ‘following along as a pseudo-hearie’.
Hearing aids and CIs are our props to ‘hear’ but not ‘access’ to the everyday behaviours of hearing-talking. There are Deafies who do well without aids and with assertive, courteous approaches.
If hearing-talking behaviour could just adapt a bit to us Deafies ‘on the fence’, communications and respect would be breathtakingly enhanced.
donaldo of the wasatch
September 11, 2014
Absolutely! We decide who we are! Too many are willing to accept someone else’s expectations/identity of ourselves.
donaldo of the wasatch
September 11, 2014
I want to jump back in and say THANK YOU! for this post and comments. So does that mean we are like a Toyota Prius (a hybrid). LOQ – “Laughing Out Quietly” is a favored expression for me. But, a hybrid Toyota Prius was and still is a simply phenomenal technological breakthrough. Awesome. Know what? SO ARE WE! When I tell folks that I am smarter because I was deaf, they do not just believe me, they know too. That has been my experience for 59 years of my 63 years mortal sojourn. Victimhood serves anyone poorly.
Helen Keller’s statement about “deafness cutting you off from people” (relationships) rings (pun intended) louder and louder each day that I enjoy this mortality. And consequently for me, I seriously reach out to others to make our mutual experience better for having met one another. It takes a kind of or aspect of militant graciousness to thrive. Some will misunderstand. So what! Those that do understand and appreciate – I defer to the U.S. Marines attitude of OOH RAH! It is that kind of Nirvana for us.
It takes humility, respect and gratitude as a moral core to successfully transition this experience. I am so grateful to a Deity that gave me the opportunity to go along for the ride.
Runaway Train
September 10, 2014
I’m glad you’re becoming more comfortable with being you; there’s not much that feels worse than not really knowing who you feel you are, and not being comfortable in your own skin.
These sorts of posts always get me thinking. I go through phases of not knowing where I fit, feeling like I have no real identity; I have Auditory Processing Disorder so I’m by no means deaf, but I don’t ever feel I’m a hearing person because I experience similar problems to deaf people – missing out on group conversations, misunderstanding, not being able to localise sounds, etc. I lip-read, like to use written info as much as possible, and gesture/sign whenever feasible.
In the past year or two, I have become more comfortable and open with my closest circle of friends about when I don’t hear something. A few of them are very good and always make sure to face me when speaking (or catch themselves if they start to speak facing away); a couple of them just forget constantly, and the remaining couple don’t really seem to understand why I can’t hear them, but all are always willing to repeat themselves. The most aware ones will also fill me in when I’m lost in a conversation, often without me even asking them to! But the experience on the whole is helping me to become comfortable as ‘me’, someone with wonky hearing.
Outside of that, I’m still a bit lost, to be honest. But now I am comfortable being myself with the people who matter most to me, I’m not too fussed about outside of that. I have my responses/explanations for various other situations (such as work) and am quite happy being an individual – teaching assistant, Aspie, musician, geek, unsporty, linguaphile, etc. – who doesn’t quite hear properly.
Emma Leigh MBE
September 11, 2014
Really timely reading this article today. I’m a CI and HA wearer, but I’m still deaf so can relate to the identity stuff totally. Top comment in my week has been, sorry didn’t realise that you are deaf because you can speak….. yeah right!
Natalya D
September 12, 2014
I find the assumptions made based on “how people hear us speak” which isn’t the same as “how we speak” is very interesting and maddening at the same time. Professionals are just as guilty, can see your test results and know how much you struggle but if you speak “well” you’re deemed and perceived as cleverer than if you don’t speak “well”.
I think some of it is about judgements, psychology on speech by hearing people, I have seen people with speech impairments treated as if they are stupid or discriminated against more than other disabled people because speech is such an effortless thing for many people that they associate so many things from it (class, race, education, dis/ability etc).
For me that started as a child, “she doesn’t need a statement cos she speaks well” even though I was well and truly in the criteria. I’m often labelled as officially less deaf than I am cos of my speech.
Don’t get me wrong, having clear speech that I can make myself understood with is a great luck and privilege not everyone has, but it is also a double-edged sword which allows people to “forget you’re deaf” “I always forget you’re deaf” and somehow make that my fault etc.
Kim, I hope you keep getting more comfortable in whatever deafhood you wish to inhabit and that people around you deaf or hearing are respectful and supportive of that on all levels.
Julie Southern
September 19, 2014
Thanks for this. It helped me to better understand what life must be like for my daughter, who has a severe-to-profound hearing loss.