You Don’t Need to Fix It.

I’ve been thinking of this for a while now, and over the last couple of days, it has been bubbling within me. On Tuesday night, I watched Rita Simons: My Daughter, Deafness and Me on BBC1. I had been looking forward to it, as my friend Lizzie had texted me about it being on TV, and my mum had been talking to someone else about it during the day too. Tuesday night arrived, I settled down with my mum and sister…and all started well. Rita’s daughter has a progressive hearing loss, which means that (like me), her hearing will most likely deteriorate as the years go on. To start with, I understood the heartbreak that they were experiencing, and could understand why they were looking for alternate ways to help their daughter. However, as the programme went on, I felt more and more irritated and appalled at Rita’s attitude. The way the programme was filmed was awful, in the end, too. Why? Well, bear with me.

Don’t get me wrong, it started well. Where it began to go wrong, though, was when Rita began to meet other Deaf people – and I mean Deaf with a capital D. (For those who don’t know, that means deaf people who are full signers, who are often enveloped within the Deaf Community and Culture.) Her attitude became quite defensive, as she spoke about how they were bringing up their daughter orally, mainstreaming her at school, and were researching cochlear implants. That would all be fine. But when she broached on the topic of cochlear implants, which, amongst D/deaf people can be an extremely controversial and sensitive subject, she became very offensive. One of the Deaf people she met suggested that, in her eyes, cochlear implanting a young child is like a form of abuse. Okay, so maybe that was quite an offensive thing to suggest, but the thing is, that was just her view, and she was not in any way suggesting that that is the only way to think about cochlear implants. However, Rita took offence by it, and began to enter into a debate about something that she really oughtn’t have, since it was apparent that she didn’t really understand why Deaf people feel the way they do.

What angered me more was the fact that the BBC didn’t feel the need to diverge further into this; the fact that they cut off the filming of that debate, just as it was getting interesting, it annoyed me. It painted a bleak picture of the Deaf Community, and made Deaf (and deaf) people look like evil, soulless creatures who are very anti-hearing. That is not the case, at all. The programme just went downhill after that. In the end, Rita said that she was in favour of cochlear implants “100 percent”, and that that would be the route they are going to go down. Although her husband had a bit more sense about him, (he actually went to listen to simulations of what speech and music sounds like with a cochlear implant) I have a bad feeling that they will end up implanting their daughter and cutting her off from the Deaf world. Not in a bad way, because I am not against cochlear implants, but in the sense that they, especially Rita, seemed to turn against D/deaf people, and wanted her daughter to be “normal”.

In a world that is supposedly becoming more and more accepting of differences, and disabilities, this attitude stunned me. It made me feel shit about myself. It made me feel like there are many, many people out there who think that deafness is something that needs to be fixed. In this day and age, with technological advancements, yes, I can understand that people want to use those advancements to help each other. However, what I will not, and never will accept, is the way that hearing people (sorry to generalise here, I know that there are many who are absolutely, 100 percent on the side of D/deaf people) feel the need to go around fixing poor little deaf people’s ears, curing them of deafness and taking away any sense of deafhood in those people. I’ve got news for you all; deafness cannot be fixed. It cannot be cured. Do you know why? Because just by implanting a young child, just by putting hearing aids in their ears, just by sending them to hours and hours of speech therapy…it does not, and never will, make them hearing.

My parents were in the exact same situation as Rita and her husband, except, maybe, it was slightly worse. They got a double whammy dosage of “bad” news. Both my sister and I were diagnosed as being deaf at the same time. She was 6 years old, I was 2 years old. My mum has told me, in the past, that it was heartbreaking. She felt so confused, so lost. Her beautiful children, both of them, had damaged ears. What she didn’t know, back then, was that our deafness would in no way hinder our lives, or stop us from achieving whatever we want in life. The only thing that would hold us back would be the ignorance of people who are not accepting of differences. All of this may sound harsh, it may sound bleak, but it’s the way it is. There are many people out there who may see deafness as something that needs to be fixed. They may think that being hearing is the only way to be, and, oh golly, we can’t have people going around not hearing things, can we?! Seriously? Are you kidding me? I know how hard it is. Being deaf is both a blessing and a curse. Having a progressive hearing loss sucks, honest, it does. But I would much rather be deaf, than hearing, quite frankly.

Some who are reading this will probably be thinking I am mad. But, really, I’m not. I am glad to be deaf, because it has made me who I am today, it has meant that I’ve met some truly amazing, inspirational people, people I would not have been exposed to otherwise. Some of my friends are wonderful, and they are hearing. I have a whole other handful of friends who are D/deaf. It makes no difference. With the D/deaf friends, I can relate, I can be on the same wavelength in terms of experiences and our day to day lives. With the hearing friends, I can experience the hearing world, I can hear (yes, hear, wow!) their stories from their lives. Being deaf hasn’t stopped me from setting out to achieve my dreams. Last year, I lost a lot of my hearing. It was hard, and it was really, really painful. I was suffering for a long time, not in physical pain, but mentally. It hurt. To get used to one level of hearing, and then to have that hearing taken away from you, and to have to adjust to a whole new level of hearing…it’s tough. I won’t lie. But, still, I am happy to be deaf. I feel a sense of pride, of belonging, and all because of the things that Deaf and deaf people have achieved throughout history. The things they are still achieving today. I feel proud. I feel a sense of belonging that many hearing people do not have; I have a community, even if I don’t always join it. I have a foot in both worlds, the Hearing World, and the Deaf World, and I have my own world too – I have the world that is in between the two, a world in which I can be with just me, and watch both hearing people and Deaf people, my own, comfortable world.

I have no regrets. I am who I am today because of everything, and I mean every single little thing, that I have been through in my life. Heartbreak, natural highs, academic achievements, being on the stage, making life-changing decisions, enjoying the little things in life, as well as the big things; all of it, it makes up who I am. I love my parents so very much; they are both hearing, and they surrounded both my sister and I with love. My mum was the confidante that I would always go to with tears in my eyes, because I suffered so much, growing up, and had to accept how different my deafness made me from my hearing peers. I can’t even imagine how strong she had to be, to listen to me and not break down herself. My dad was always there to have a giggle with, to be goofy with. Then, as I grew up, I became closer to my sister. We have something special that bonds us; our deafness. It’s special, and I wouldn’t change it for the world.

Of course, there will always, always be obstacles and hurdles to overcome, but I have the right people around me, I am living in the right time period, to be able to get over any of it, to overcome it all. We are strong. Deaf people are not weak, they are not damaged, and they do not, ever, ever, need fixing. You don’t fix what is not broken. Rita ended with: “I cannot fathom for the life of me – and I’ve tried – if sound is on offer why you wouldn’t use it.” I end on a high. I am happy with what I hear; I miss the hearing I had, I miss hearing music naturally, I miss hearing the boy’s heartbeat…but I am content with what I can currently hear through hearing aids. No way do I want to hear music without the melody, to miss out on all those beautiful notes. Sure, it doesn’t even sound the same with hearing aids, but I’m getting there. I don’t want it to just become “noise”, which is what it would be with a cochlear implant, but that’s a whole other post…and I’m running short on time now. I’ve been ranting for a while. It’s clear now, and I am feeling happier now that I’ve put this all into words. Rita, as lovely as you may be, please, please reassess your stance, because you offended a great amount of Deaf and deaf people on Tuesday.

Me? I’m happy. I hope you are too.

So…

…what’s been going on? I haven’t done a proper blog post for a few days now, mainly because I feel like I haven’t really got any news, and I don’t want to moan about things any more! I’m actively trying to keep a positive outlook on things, because it’s all too easy to slip into the negative mindset. There are a few things that seem to be hanging over me, so I feel like I just want to type it all down, and get it off my mind. (Perhaps then I can be more focused on the things that need to get done – a messy room and uni work want my attention!)

The first thing is money, or rather, the lack of it! The boy had patiently sat down with me this afternoon and tried to make me a financial plan…but I got all worked up and kept snapping at him (it’s no help that both my hearing aids decided to pack in the other day, so I’m relying on lipreading…with no back-up, bloody annoying!). But now I’ve calmed myself down and I’ve looked over the notes/numbers that he jotted down, and they make sense…hmm, he’s a clever boy. The fact that money is a worry for pretty much everyone in the house at the moment, well, it makes you worry even more, I think. However, the simple fact is that it is easy to budget, and this is precisely what the boy has tried to help me with. So, I’d better give him a big, big hug the next time I see him, mustn’t I?!

Yeah, so the other day, BOTH of my hearing aids decided to stop working – brilliant! They did this back in December too, so I took them to the hospital and had to get through the festivities without my hearing aids; and now it looks as if I’m going to be living in silence for a while again. These hearing aids seem to be very temperamental! *Sigh* The thing that annoys me the most about not having working hearing aids is when it comes to lipreading, as most of it is guesswork, so having some sounds to back it up really does take the strain of lipreading away. Ugh. It’s part of the reason I decided to wear hearing aids again, last summer, as I was getting so tired, too quickly, due to having to focus so much on reading lips without the sounds. Ah boo. I wish I had some sort of hearing aid technical expertise, so that every time this happens, I can fix them myself. Humph.

The last thing is uni work. Hmm. Recently I’ve had no focus. Zilch. None at all! I’ve been going to bed, with a free day the next day, and tell myself, right, tomorrow, I must get on with some uni work… And it just doesn’t happen. There are things going on all around me, and those things win my attention. It’s pretty bad. I’m starting to think that I need more structure, more plans, so that on the days I schedule to do uni work, I actually get it done, instead of spending the day procrastinating. At this rate I’m going to end up with charts for everything – money, uni work…

It is necessary sometimes to work through things like this though, and write down plans and solutions for the things that aren’t going how you’d like them to go. The money issue has been worrying me for months, but I’ve not actually sat down and done anything about it until today! It’s good to go through these things with someone else, because they will often have a solution that you wouldn’t have thought of, because you were too focused on the issue itself to even think about a practical solution. Or maybe that’s just me, because I’ve been stressing too much recently?! Huh.

As for the uni work, I think the best thing to do would be to timetable the days when I have free-time, and do a rigid plan for those days, with no space for procrastination. I need to be strict with myself when it comes to uni work, because I’m the only one who will tell me off and the only one who can sit myself down and force myself to get on with it. Really, I need to buck up and be firm. Forget the “thinking cap”, I need a “study cap”. That’ll do the trick!

Right, the best thing for me to do now will probably be to tidy/clean my room, because a tidy room equates to a clear mind…or so I’ve heard (I’ll let you know how that goes…) Hope you’re all having a happy Friday! (If not, then get that FRIDAY FEELING!)

Hidden

It’s strange, how other people with disabilities sometimes perceive D/deaf people. Some, not all, seem to think that we’re not disabled, and we have no right to claim to feel excluded and different from able-bodied people. It’s almost as if because our “disability” isn’t visible, it’s not there. When in fact, it’s the opposite. Whereas they can learn not to let their disability stop them from building good friendships, learn to accept it as a part of them…and just generally feel included with understanding/accepting hearing people…we can’t always get that. We have to work so hard, if we lipread, just to follow a conversation. Our eyes are doing most of the work every single day. We won’t always hear the dangers around us. Some of us rely heavily on hearing people to keep us alert to the world around us. Some deaf people, like me, can never hear the radio…it’s just a static, crackling noise in the background, never coming into focus. There’s so many things that make up our daily lives, that so many people don’t even think twice about…and yet they think we have no right to be “disabled”. And they wonder why we hate the word so much.

“Disabled” means you’re not ABLE. It means there’s something about you, that holds you back, because it doesn’t work as well as it should do. For us, it’s our ears. However, the reason we hate the word…is because for the majority of us, our deafness is NOT something that holds us back. For most of us, it’s a unique part of us. It makes us who we are. It’s ingrained into our personality. Rather than sitting and feeling sorry for ourselves all day, we get on with it. I find other Deaf/deaf people so inspiring, because they allow their deafness to make them stronger and a lot of Deaf/deaf people I know/have met, do not let anything inhibit them. Life goes on, and we know that only too well.

There is no point in this life, to sit and worry too much, to let things get you down all the time, to never go forward. And I NEVER want anyone to feel sorry for me. I hate it, absolutely hate it, when I meet someone…and they realise that I’m deaf, and their whole attitude changes, for the worse. They get patronizing. They look down. That look crossed over their face and then they treat you completely differently to how they did a few seconds ago. Although, admittedly, this hasn’t happened for a long time now. I think the times are changing at last. More and more people are becoming aware, and more and more people are wanting to be more accepting.

Deafness is, and probably always will be, a hidden disability. You can’t see it. One in seven people are deaf. But you won’t see it. Unless you can see their hearing aids – but even then, not every one wears hearing aids/cochlear implants. Not every deaf person signs. Not every deaf person lipreads. Not every deaf person sees their deafness as a part of their identity. Not every deaf person will be happy to associate with hearing people. Not every deaf person wants to be deaf. Not every deaf person wants to be hearing. What I’m trying to say, is that every single deaf person is different. You cannot generalise. Every Deaf/deaf person you meet will be different, because everyone is different. So, whilst it’s nice if, when I meet someone, they start signing to me, they shouldn’t. Because the whole point is that you need to ask. Ask the person you’re talking to what their communication methods are, because, if you start signing like there’s no tomorrow, and then the deaf person doesn’t even sign…you’re going to go pretty red. Everyone in this world is different. That’s what makes us all unique.

I’m still learning about who I am, and how my deafness fits into who I am. Every day, it becomes more and more a part of me. I like being deaf, because it’s shown me a whole other world. It’s shown me how to adapt to many things in life. It’s made me more accepting of others. It’s me. And it’s hidden. Always hidden. But always there. I’m deaf, and it’s alright.

Note: this is just my view, and there are so many other views out there. My view is not the RIGHT view, it’s just MY view. I know that some people won’t agree with everything I’ve said…but then again, isn’t that the whole point? Life would be dull if we all agreed!

Boy, why are you crying?

Yup. Peter Pan. What a lovely boy. Well, actually, he’s pretty arrogant at the beginning – “Oh! The cleverness of me!” – but then he goes on to talk so beautifully about girls…saying that one girl is worth twenty boys! Uh huh, that’s a lovely boy. And I love the fact that he’ll stay a boy forever. In fact, I just love Peter Pan, Barrie created such wonderfully lovely characters in his plays/books. The reason I’m raving about Peter Pan is because I’m currently working through the play text, analysing it, and writing an assignment on the fairyland. I still can’t quite believe how much I’m enjoying my Open University module/course this year! It seems to be the first time in a while that I’ve actually been enjoying my studies again. It really seems like things are on the up again = good times.

It’s been a strange week so far. Monday was, quite simply, shit. The whole thing to do with my hearing taking a drop just seemed to shadow everything and really pull me down. And despite trying to be strong, Tuesday and Wednesday were hard days too, because I kept breaking down at various points throughout the day. Happily, I’ve managed to kick some sense into myself now and I’m drinking out of a cup of positivism again…phew! It’s just that, for now, I don’t need to get worried and stressed about the hearing drop thing because I do still HAVE some hearing, and hearing aids are really helping me these days, so whilst I still have all of that, I really have no reason to stress out about not being able to hear some day. I think I was just grieving for the hearing I had before…and grieving for the hearing that I’ve just lost recently. Honestly, every time my hearing drops, a little piece of my heart gets broken. Not permanently, but it bloody hurts when it happens.

Things started to pick up a bit on Wednesday night, as I was in the Christmas show, and the little boy I support was back! (He had been ill, which meant that I hadn’t seen him since before Christmas!!) So, that special little deaf boy, well, he just really injects sunshine into everything he does…and so when I see his gorgeous little face…a smile erupts on my face. Happy days. I really hope I can support him again in his Children’s Theatre weekly workshops…otherwise I’m going to really miss him. I’ve been working with him at the theatre for a year and a half now…and I adore him. Oh boy! Another little Peter Pan, he is.

I find late night blogging sessions fairly therapeutic…they seem to bring a calm over me and all my troubles seem just a little bit less troublesome. I guess that this blog is kinda like a good, old friend. It’s been by my side throughout the last few years and I now find that reading back through old blog posts can be funny sometimes. When I read back over posts I did when I started the blog, I chuckle to myself. It was around the time during the summer before I went to University…and I felt so excited, yet so scared at the same time. I’m really quite glad that I started this blog…it’s been a good journey. And a good way to document that journey. Life isn’t all daisies and sunshine all the time, and yet, there are moments of happiness that seems to rush through your body and lift you into the air for a while…but quite a lot of those great highs and blue lows seem to be recorded amongst the blog posts; it’s going to be a great thing to look back over in years to come. And there’s still a whole load of adventures to go on and record…so don’t worry, I’m not going anywhere just yet!

Hope everyone has a very, very, very HAPPY FRIDAY! And also, if a certain close friend happens to read this…HAPPY 22ND BIRTHDAY! Looking forward to celebrating with you in 60s style on Saturday night <3 Everyone else…have a great weekend

Noisy in my soul

Had a check up with the audiologist yesterday. Not good news. My hearing has dropped again; this time in my left ear. About a year ago, there was a drop in my right ear. Every single time my hearing drops, it really does break my heart a little. For the majority of the time, I accept my deafness, it’s who I am. But, and that’s a big but, there are things I truly HATE about my deafness. And one of them is the fact that it’s a progressive hearing loss – prone to getting worse over time. Now, in itself, that’s a lot to put up with. What makes it even worse is the fact that you never actually know when its going to drop. It just happens out of the blue. In that gap between going to see the audiologist. And I only know when it shows up on the audiogram, after I’ve gone through the hearing tests again.

Honestly, I’m not a weak person, if anything, I have to be a strong person, because it’s what my deafness has taught me to be. But when the audiogram shows a drop in my hearing, I start to crumble inside. I won’t cry in the hospital. Won’t cry in front of people I don’t really know. But it’s inevitable that I will cry. And I cried. When I got home, 2 or 3 hours after leaving the hospital, it all just flooded out. The one person who has always been there, through all the highs and low of my deaf journey, is my mum. There have been times when I probably couldn’t have carried on if she hadn’t been there to help me and to help me pick the pieces up again.

The thing that scares me the most is the thought of waking up one day, to complete silence. And it might happen, one day. No more music. No more voices. No more buzzing of daily life’s noises. I would hate it. Which is why I am starting to see Cochlear Implants in a different light. I’ve never been against them, but I’ve never really seen them as something that could help me personally – well, it’s only been within the last year that I’ve started to wear hearing aids again! At the moment, a Cochlear Implant is not the answer for me; but the audiologist said that if my hearing continues to drop like this, it would be better to change it, rather than live and struggle with too little hearing to use. He said that if it got to the point where everything was just a struggle…change it. Which is why he suggested that I think about the future…and the possibility of a CI. I’m just in two minds about it right now; but if I woke up to no hearing, it would most likely be a very strong contender.

I’m letting myself grieve a little because, after all, a little part of me has died. Another little piece of my hearing, that I savour so much, has fallen away. I miss my hearing; I miss just what I had five years ago, when I didn’t wear hearing aids and I got by using the low-frequency and little high-frequency that I still had. These days, a lot is hidden in silence…and hearing aids are turning into my ears. It’s noisy in my soul at the moment, I want a bit of peace, and a smile.

Two Little Helpers

Thought I’d post a little update on the Hearing Aid journey… It’s really interesting to see how much has changed, already! They always say that it takes a few months to get used to hearing aids, and they’re absolutely right. On September 30th, I said:

If I can get used to them, they’ll probably make my life a bit easier. When I’m tired, lipreading becomes a lot harder than it normally is and I often miss a lot…so if I was to pop my hearing aids in, it may make lipreading slightly easier in times like these. Or maybe it won’t. I still prefer music without hearing aids though, it just doesn’t sound right with the hearing aids. It turns into a huge, ugly combination of noises…the singers sound awful, the drums, bass, everything just blends together and it truly sounds horrible. And the thing is, I KNOW it shouldn’t sound horrible. When I listen to music without the hearing aids, it sounds just right. Not in the slightest bit horrible. I guess that these hearing aids and music don’t go hand in hand.

Wow. Music and these hearing aids don’t go together? Well, that has certainly changed! I love music, whether I’m listening to it with the little natural hearing I have…and now, even when I’m wearing my hearing aids! I simply can’t believe that I’ve settled to them to this extent! Never before has this happened, no lie. I’ve HATED music with hearing aids before. It used to sound awful. It was if someone has cranked the volume up, and just crashed and banged on loads of pots and pans and sang at the top of their voice, with the most awful singing voice you could imagine. Yep. That’s the closest I can get to describing how music used to sound with hearing aids.

Which is exactly why I’m so amazed now. Here’s my life today: I wake up, reach for my bedside table and pop in the hearing aids. Live my life for the day. Go to bed, snuggle up and get ready to go to sleep…and the last thing I do is take the hearing aids out and rest them on the bedside table for the night. I am someone who used to loathe hearing aids…the only place I wore them was at school, and when I got home…straight out of my ears and dumped like trash on the table by the front door, just like keys. Honestly, I hated them. And now I love them. Wow, wow, wow. I’m amazed, amazed, amazed.

Merry Christmas everyone

Those little things you stick in your ears…

No, not earphones. Hearing aids. Hmm, I’ve had mixed feelings about them for quite a long time now, in respect to my own use of them. Some people find that they really benefit them – it helps them to hear sounds that they otherwise wouldn’t hear…everyone has their own benefits from their hearing aids. For me, however, they’ve never seemed to be able to get the right setting for my hearing loss. It’s always been either too loud, too quiet, too unnatural, too intrusive, too robotic…this list goes on (didn’t experience all of these at the same time!).

I had tried countless hearing aids without much success. After 2004/5, I gave up on them and thus far have managed fine without them. Now, I went back to the audiologists earlier this year for a hearing test and doctor’s appointment and I asked them if there was a new hearing aid that would suit my hearing loss. Which means that since then I’ve been trying them out, in trials that last a few days here and there.

Yesterday, I tried them again. Each time I “try” them out, they seem to improve a little and yesterday I began to distinguish between more sounds – in the beginning it all felt rather intrusive and most of the sounds merged into a jumbled mess. I’ve also noticed that in the evenings, when everyone is at home, it’s too loud! Honestly – my father has his radio on, and often has the TV on in the dining room if the football is on – both at the same time, my mother will have the TV on in the living room, and will often be talking rather loudly to someone too…ah, for someone who is trying to adapt to new hearing aids, it’s all a bit too much.

If I can get used to them, they’ll probably make my life a bit easier. When I’m tired, lipreading becomes a lot harder than it normally is and I often miss a lot…so if I was to pop my hearing aids in, it may make lipreading slightly easier in times like these. Or maybe it won’t. I still prefer music without hearing aids though, it just doesn’t sound right with the hearing aids. It turns into a huge, ugly combination of noises…the singers sound awful, the drums, bass, everything just blends together and it truly sounds horrible. And the thing is, I KNOW it shouldn’t sound horrible. When I listen to music without the hearing aids, it sounds just right. Not in the slightest bit horrible. I guess that these hearing aids and music don’t go hand in hand.

I think that for now I’ll just try wearing them during the day when it’s, generally, quieter. Time will tell.