The Deaf One

The Lost Happy Endings

I went to the theatre a few weeks ago.

 Quite an ordinary statement do you think?

 To me, it doesn’t really register. I went to the theatre? Really? YES I DID!

 And guess what – I followed every single word! – That’s what is extraordinary. I still almost cannot believe it.

 The reason?

 I went to see The Lost Happy Endings presented by an organisation called Red Earth at the Mac Theatre in Birmingham. I have met with the two directors before, for something unrelated (and also very exciting) so I already knew that the show would be excellent. Not only are they extremely deaf aware, but they are two of the loveliest and warmest people I’ve ever met.

I also knew two of the actors in it, both of whom I already knew how to lip-read and follow due to previously spending time with them.

Emma Case, the star of the show who is someone I am proud to call a friend. Whose photography has always inspired me no end and her enthusiasm for an alternative fresh look on life and work, has always relit my fire whenever it’s been needed. Emma has helped me more than she knows, twice fairly recently, using her sign language skills to communicate for me during valuable photography workshops, and being someone whom I always know I can drop a line to, or catch up with her blog for friendly reassurance and happyness. I adore Emma and was thrilled that she was in this show.

Kiruna Stamell, I met whilst doing a 2 day workshop with Red Earth back in September. Out of the group, she immediately stood out to me as someone who I really aspire to be like someday. Kiruna is fantastic at what she does and extremely intelligent. I loved hearing what she had to say, forever coming out with words of wisdom, seeming incredibly wise for her years. She was so warm and encouraging towards me, and I really felt like I belonged in the group with her help. I was so excited to see her on stage!

 Both Emma and Kiruna light up on stage. They did not disappoint in the absolute slightest and I could talk about them all day. But I really cannot go much further without mentioning the other two key actors in the show, being Caroline Parker and Toyin Omari-Kinch. Both equally as fantastic on stage as Emma and Kiruna were. Perfectly cast for the parts they played, and ruddy marvellous at acting, and all four being gorgeous to look at to boot. I don’t know Caroline and Toyin personally, but I get the feeling that if I were to meet either of them for a coffee, (lets pretend I did know them for a minute) it’d be one of those meet ups when you’d walk away with a huge smile and cheeks hurting after a conversation with laughs a plenty.

 Am I gushing? I probably am. But in fact, even 3 weeks after I went to see the show, I am still in a bit of a dreamlike state when thinking back to it. Anyway, it’s my blog. I’m allowed to gush if I want to!

 When I booked the tickets, for the date I wanted, there were only the absolute front row tickets available left. At first, I felt a bit scared about this – for a start, how would Emma feel knowing that there were people she knew on the front row? The absolute, caught by the stage lights, look down and there we are, front row! Would she be a bit miffed at this? (Thankfully all I got was an “Eeek!” and a “Can’t wait to see you!”, phew). Additionally to this, I was a bit concerned about the stage being at my nose, and getting a crooked neck from looking up! As it happened, it couldn’t have been a more perfect spot. With nobody in front of me, and with the stage being at apt height to our seats, we literally saw everything, without any kind of squinting or crooking needed. This meant, lip reading had a fighting chance! Yay!

 Not only was the story being portrayed, heart-warming and instantly transfixing, but it was incredibly funny and addictive to watch, I could not take my eyes off the stage for a second while it was  was on. The four actors were excellent at their roles, brilliantly funny and provided me with proper laugh out loud moments, which as an adult watching a show predominantly with children in mind was ever so feel-good. My daughter, who is 5 and a half totally loved it too, she had a steady grin on her face throughout. Well, except for when Job, Emma’s character was upset, the grin turned into a face of genuine concern at that point!

 The fact that there were only four characters was a huge plus point for me as well. It was easy to follow, kept us on our toes as the characters themselves, played out characters (with me?) giving me apt chance to keep up with the lip patterns and characteristics. The stage was never too busy, and it was very easy to tell who I needed to look at. Each actor was not only bloody brilliant at their part (have I stressed this enough already?), but they were very easy to lip read, always facing the audience, always clearly spoken, and always entertaining with it. The story itself, perfect for the stage, the set, incredibly designed. The direction, fantastically executed and the portrayal of the book, simply wonderful.

 The best thing for me though? Was that the whole thing was signed. And by the characters themselves which was the key thing for me. There was no interpreter standing at the side, taking my attention away from the fun on the main stage. As fantastic as interpreters are, it can be a bit monotone compared to a colourful and dancing stage, and you can’t see the show itself if you’re following the interpreter all the time.

The other thing, was the it wasn’t a signed show. Everything was signed, don’t get me wrong, there was sign language throughout, and nothing was missed (there was actually a small part of the show that included dancing text across the top as part of a sequence which made a fantastic twist to the script, very much being part of the design) but the sign language wasn’t what the show was about. It wasn’t what came first in the description. It was so cleverly integrated within the performance that whether you needed the sign language or not, you would have felt the show wouldn’t be right without it. There would have been something missing if the sign language hadn’t been there. Now I have no idea, actually, if the original screenplay states there is to be sign or not (I am aware of Carol Ann Duffy, and her work but only in book form) but it works perfectly that there is sign there inbuilt as part of the performance. It’s neither patronising nor awkward, it just, well, goes.

 If you were hearing therefore not needing it as such to follow, it was part of the show in a way that wasn’t intrusive, inbuilt into the acting and the performance, adding spirit and visual effect  to what you were seeing. It taught children words in sign in a way that wouldn’t have felt like they were being actively taught, it added to the humour, it contributed to the wonderful quirkiness, it gave the show it’s magic.

 And for those who did need and appreciate the sign language within, it felt like a lifeline. I have never, before, been at the theatre and laughed at the same time as everybody else. I cannot explain just how wonderful that is to me. It gave me confidence to sit back and just enjoy a show, knowing that I was in tune with the rest of the audience (especially as I was on the front row!) and I didn’t look out of place as a stony figure of confusion. It gave me the experience of actually knowing what I was talking about when I enthused about the show afterwards, frantically rushing onto Twitter, Facebook and texting friends to say YOU MUST GO AND SEE IT!

But most importantly of all, to me, it gave me a conversation with my daughter that I will treasure for the rest of my life. A conversation that I relayed to my husband and my parents, a conversation, simply talking about the trip we had just made, and what we had just seen, that made me feel like I was a wonderful cool Mum, taking my daughter to the theatre. Just like every Mum should.

 TDO X

Welcome, 2012!

Happy New Year!

Wow, its 2012! One of my new year’s resolutions will definitely be to blog more. In fact, I must. Not necessarily because I think my audience will like it, but because it’ll be good for me.

Writing was always cathartic for me during good times and bad, when I was a teenager, I wrote countless diaries, every day writing a new essay on the day’s events and I was constantly reading back the previous entries. As I got older, I got out of that habit, as you do when I became preoccupied with boys, studying and well, let’s be honest, partying. When I started this blog, way back in 2009, as a way to spill my thoughts and share my journey as I went to get a Cochlear Implant, I relished again how writing helped me get my head in order.

When things got busy, thanks to my Photography Business  (take a look at this blog post by the way, recapping and sharing 2011’s weddings!) I started to neglect my writing side of things. It also didn’t help, that I felt so let down by my Cochlear Implant not working out, that it felt like I was flogging a dead horse wittering away on a blog intended to start out as a way to share my experiences.

As it has now been some months since I wrote here regularly, and 2 years almost to the week that I was first switched on, I’ve decided to let those demons go by using this blog as a means to write again, but not necessarily specifically hearing related. I think, actually, that this still will be my place to write about all things deaf/hearing related on the whole. But does it really matter if the odd post slips in about something different?

No! Because it’s my blog right? I can write what the hell I want to write!

Things have been very difficult at work for me lately. I think that’s a blog post in itself as I’m due a meeting with my lovely bosses later on this month so it may help me work out my stance on the matter. And that will be, obviously, deafness related. But things at home have also been just lovely lately, and I have at times, wanted to share that loveliness with the world – so although that hasn’t been deafness related, you know what? I think I will share!

In the meantime however, I have something fantastic to write about. I cannot believe it’s taken me so long to write about it! I’m going to write it as a separate post though, because it’s a review of something that has no relation to the above.

See you in a paragraph or two……

TDO x

Sorry for the radio silence recently, I’ve had WordPress/LiveWriter password issues. But I persevered today and got it sorted.

The reason? I feel the need to write quite desperately. I needed to get across why it mattered so much, that Deaf people were so upset by Radio 1 DJ/presenter Sara Cox’s tweets on Tuesday evening.

I’ve been quite upset at some of the lashings that the Deaf community have had with regards our outrage over the matter. I need to talk about it, and justify why we had to say something.

For reference, it started off with the following three tweets on Twitter by @sarajcox:

How daft is this? I’m on a date at flickrs (with ben, obvs, or otherwise I’d be more discreet)&bridesaids is gonna have English subtitles

Followed by:

I morphed momentarily into my dad & asked if we got any money off cos of the subtitles. #youcantakethegirlouttabolton

and:

If I was wearing my specs I could’ve just put a thin strip of black gaffer tape across bottom of the lenses to block out of the subtitles

Well, the reaction was severe. Within minutes of this tweet there was an uproar from Sara’s Deaf followers and in turn it was retweeted to the attention of those who don’t. Within an hour there was a barrage of tweets defending the point of subtitled films storming Sara’s way.

So why did it provoke such a response?

Before I go on, a disclaimer: It is clear that Sara’s tweet wasn’t malicious. It is clear that her tweet wasn’t intended to offend. But unfortunately, even if the intention wasn’t there, it doesn’t mean that it wasn’t capable of doing just that.

I think the word “offend” is actually quite a strong word in this case, but it’s hard to think of a better word. What the tweets did, was make a lot of people very cross.

Deaf people have had to work very hard for years to get access to films at the cinema. Thanks to the work of the people who run the ruddy marvellous website www.yourlocalcinema.com, we are very slowly, starting to gain speed on access to see the latest movies on the big screen and This.Is.Big. It’s a start, a glimmer of hope that access in ANYTHING can happen one day soon.

It’s only the cinema, you may think. Just get the DVD! The cinema isn’t that big a deal surely?

Well why shouldn’t it be? It is! Why shouldn’t Deaf people enjoy going to the cinema as much as the next person? We are entitled to the same of life’s little pleasures as everybody else. Going to the cinema is an activity that many people take for granted. A hearing person with normal eyesight can decide at the spur of the moment to pop to the cinema to grab a flick, partake in some popcorn consumption, make an evening of it without a second thought. What film would you like to see? The new Harry Potter? Absolutely, shall we go tonight? It’s on at our local screen.

For a Deaf person, or someone with a sight disability, it’s not that simple. Being able to go to the cinema depends on many factors. These include not only whether the film is subtitled (or Audio Described for the Blind), but where and when it is subtitled. If it’s not at your local cinema, you have to try the other cinemas within an x mile raidus. I’ve been known to travel for an hour, just for a subtitled film I really wanted to see, that was on at a time that I could attend. On top of subtitled films being so rare anyway, too many of those that are shown are on in the middle of a weekday, or late on a Sunday night. Not ideal in the slightest, for full time workers – and believe me, far more Deaf people work than don’t. 

Subtitled films can’t be an inconvenience to the cinema after all – they survive on the swarms of Hearing people that attend and fill their screens, to make their money. It’s a catch 22, after all there aren’t as many deaf people in my home town than hearing people so what can they do? Show a film that deaf people can watch at a reasonable hour, lose a potential full cinema’s ticket sales; so they go with what they trust will bring in the spending. As a result, Deaf people get little chance to see films at the cinema. They are so few and far between and those that are shown, are hard to fit around normal day to day life.

Which is why, when a hearing person complains of the “inconvenience” of having subtitles at their showing, when they could go to ANY other showing, on ANY other day of ANY other film, it’s insulting. It’s an inconvenience to you on this one occasion – it’s an inconvenience to Deaf people Every Single Time.

Sure, if you don’t need subtitles, perhaps it’s irritating to have them, but the moral of this story is don’t shout out about it. Deaf people struggle enough to get the same rights and access as Hearing people, to hear about inconveniences that quite frankly appear minor to us – at least you can still hear the film whether it’s subtitled or not after all.

What angered me most, was not the first tweet as such, but the fact she had asked for money off the film, due to it having subtitles and then the trivialising of the issue with the glasses and gaffer tape comment. It was the implication that the subtitles, which subsequently are an absolute LIFELINE for Deaf people (and not just in the cinema), something that we cannot cope without; were such an inconvenience, that she felt she deserved money off as a result. And then onto making a joke, to “cope” with such inconvenience; can you see why we were so upset about it?

To add insult to injury, what didn’t help Sara, were her follow up tweets once she came out:

For all you gobshites we checked online & it didn’t mention it, the guy said it was a last minute thing from head office. Night.

10 or so minutes later:

Crikey come out of cinema to lots of severe tellings off from very cross people. Sorry my random musings might sometimes not be thought thru

By the time I was back on Twitter, the whole lot had been deleted. This caused more grief, as all Deaf people wanted now, was some sort of acknowledgement that the original tweets had been a bit insensitive.

I said myself on twitter that there was no need to delete the last tweet. I may have seen the screen-grabs, but it would have been nice to see it actually on Sara’s page. The fact it was gone, meant the apology didn’t exist anymore.

Although the “Gobshites” term was probably very silly, I am also level headed enough to understand that she wasn’t calling Deaf People in general Gobshites, just those who had put her in this rather overwhelming position. I imagine it was a knee-jerk reaction, but lets be honest, it put her in a less favourable light with the Deaf community. Added to this, the subtitled film would NOT have been a last minute decision by the Head Office – whether she was ill informed, or made that up to defend her position, we don’t know but films are not subtitled last minute – how on earth would Deaf people know of this so to attend? What would be the point in making the decision just before the film was shown?

Subsequently, I then through various networking mediums discovered some kind of apology via the press. It’s something I suppose but I feel the apology should have been made in the same way that started the issue – she should have tweeted it. It feels like it’s been shirted, that it didn’t come from Sara herself. How was using the press, initially one smaller scale paper, going to get the attention of the hundreds of Deaf people using Twitter? Ultimately, it was relied upon that one person with the link, would get retweeted, henceforth using the domino effect to reach everyone else. Hardly taking responsibility.

I think that Sara would have recouped a lot more respect from the Deaf community had she responded in a more calm, immediate way, with a dignified “OK, I got it wrong, I didn’t understand. I’m sorry” or similar. I agree that she shouldn’t be crucified for her words which were, as she apparently put it, careless, but it would be polite to acknowledge what’s happened yes? As a high profile figure with celebrity status, she automatically carries a burden that everything she says could potentially have influence and consequence. This should have been acknowledged.

What saddened me on top of all this, was the response of a few Hearing people. Either via comments on articles eventually in newspapers, or towards Sara’s twitter account herself. It seems that the Deaf community have taken quite a battering as well. It proved to me that there is such a huge lack of understanding of why this had such an effect on the Deaf community. Most comments I had about this saga from Hearing people, other than those who did indeed “get it”, have been kind and well meaning if still not quite getting the point, however it was very hard to read comments saying we were being insensitive, and to “lighten up”. For example, amongst some I read were:

@sarajcox don’t worry about it hen, some people go out of their way to be offended.

and

@sarajcox just ignore! Some people not happy unless they’re on their high horse #superioritycomplex

It sometimes feels that we can’t win, damned if we complain and get a bad reputation as a result or damned if we don’t and see the failure to improve or even decline of services that mean so much to us. All we want to defend is our right to have the same access to everything everyone else has. And going to the cinema is just as important. It’s not everybody’s cuppa, some people can take it or leave it as far as going to the Cinema is concerned but the principle is there – it’s hard work in progress, getting these subtitled films. PLEASE DO NOT DISS IT.

So I’m asking, please don’t defend Sara Cox’s tweets by telling me you don’t think she meant to offend – I worked that out for myself. Perhaps you felt uncomfortable with the battering she was getting – to a small extent, so was I when I saw a tiny minority of tweets heading in her direction had crossed the line – there’s always going to be one or two - I do understand that, but I hope I’ve explained a little bit why it touched such a huge nerve with Deaf people – and why its a valid nerve to have been hit.

From our point of view – what’s just a distraction for you (when you have plenty of other options and we don’t), is the difference between us getting it at all – or not.

So forgive us for being less forgiving of Sara’s complaints – if you do need to talk about it; be at the same time, sensitive to the fact it’s so important to us these subtitles exist somewhere and somehow. SUBTITLES ARE PRECIOUS. A hint of anyone who’s words can influence, dissing them, is going to get a heavy defensive response.

There is an EXCELLENT blog post by iannoon which upon reading, I wonder why on earth I didn’t just post a link to in the first place in stead of write possibly one of the waffly and unconstructed posts I’ve ever written for The Deaf One. But it has been hugely cathartic getting it all out as it’s been bubbling a little in me all week. And my regular readers will know well, how I like to talk. I don’t know if I’ve made sense, I hope I have to some extent. I haven’t directed this post at anyone in particular by the way, so if you’ve commented to me over the last few days about this,  I didn’t have anyone in mind whilst writing. I have many lovely friends who do get it but sometimes I have to explain formally, why there’s more to it than mass hysteria over something that may seem trivial.

I’ll leave you now with the wise words of @Deaf on Twitter which I do think rings true of this whole affair and the readers of some daily newspapers could do with repeating:

“Deaf people need to be judge of whether [its] hurtful or not, it’s their struggle”

So trust us, we were annoyed. And we had reason to be xx

More links here:

How the story unfolded on Twitter in quotes by Pesky People

Where cinemas are letting Deaf people down From the Guardian by Deaf journalist Charlie Swinbourne

Sara Cox’s statement provided by @paulbharrison

Articles that reported the story in no particular order:

The Mirror
The Sun
The Express & Star
The Telegraph

Sorry I’m Deaf, I mean English…

I am writing this, sitting in a bar on the Royal Mile in Edinburgh. My husband is watching the footy, while we ignore the rain pounding outside and wait until our train home is due.

We love Edinburgh, although haven’t been hugely lucky with the weather on our trips here. The last time we visited we were newly married and escaping away for a brief honeymoon. Trouble was, it was the start of the Big Monsoon of ‘07, and we spent much of the time in pubs willing the rain to cease. Sitting in pubs wasn’t a bad thing altogether, although we had hoped to see more of this beautiful city. We managed to see some of Edinburgh Castle but due to said rain it was rather miserable; but at least we went home 3 days later having done something other than drink and relish in newlywedness.

This time we’re in Edinburgh because I had work yesterday. I shoot weddings sometimes, I’d like to shoot weddings more than sometimes (especially for Deaf people) but a Photography Business takes time and work to build. The wedding yesterday was absolutely beautiful. It was in some caves partly underground and partly dug out of a huge stone bridge. Dark and mysterious, I found it a little unnerving in places but it suited the couple getting married down to a T due to it’s uniqueness and fun indifference.

The reason for this post? Well, I knew that the wedding would be a huge challenge from a photographer’s point of view due to the extreme low light. But what I didn’t think of, was not only would the low light also mean lip-reading would be harder, but I completely forgot that the people of Scotland have, well, a Scottish Accent.

The couple themselves, were absolutely fantastic with me. They already knew that I was Deaf, and they are one of the loveliest couples I’ve ever met, having communicated by e mail for several months, I knew I’d get on well with them. Obviously madly in love with each other, and extremely excited to be married. It was such a lovely ceremony, and their friends and family all friendly and fun. I cannot WAIT to share their photos with them. I must thank them for their patience with me though, fabulously understanding and humorous, they really helped me feel that I wasn’t being a pain with my struggles to get past their accent in the dark rooms of the caves.

I did struggle though, to understand the broad Scottish accent spoken by people I’ve met whilst visiting this beautiful city. It’s never easy to understand accents, but I did wonder why I was finding the Scottish one harder than normal. It could be the dialect rather than the accent. But I also think I’m not familiar with the Scottish accent as well as I might be with others. My day job, being in Birmingham which has inhabitants with nationalities from all over the world gives me experience in understanding a huge range of accents but at least in those situations, I’m in a quiet office with a one to one scenario and pieces of paper at hand.

In the city of Edinburgh, especially in a venue with music and chatter in the background, I was never going to find it easy was I? I don’t think it’d have been any different if I had been talking with a couple from Egypt, Mexico or Timbuktu. I must remember this in the future, and perhaps mention it to the venue or couple in advance. Not that it’s hugely necessary, but it perhaps will make me feel more at ease knowing they understand.

It does frustrate me though. I so WISH I didn’t feel like I was weird. I know I’m not (ok, perhaps a little but, but not lack of hearing related ;-) ) but I constantly feel like I’m coming across as strange.

I nod my head a lot, I smile sweetly at the times I hope is right. I keep my eyes open for body language that gives me clues. It’s either this, or spend the whole day asking people to repeat things up to five times before I give in. I read a really good post the other day, about being Deaf and our pretty amazing eye for clues given away by body language to help us out. There are often times when I see Hearing people wonder if I am really as Deaf as I claim, because I understood what they said or wanted. Well – body language and coming to conclusions as a result of interpreting it, has a LOT to say for. You can read Deafinitely Girly’s blog post about body language here. Body Language did help me yesterday, I saw the Father of the Bride looking out for the Bride’s arrival, and he ran up the path shouting something. I guessed the Bride had arrived, I didn’t hear a thing he was saying but considering I knew what he was looking out for, and considering his pointing gestures, nods, waving his phone in his hand – there was only one thing it could be couldn’t there?

I think in recent months I’ve been getting rather frustrated at my Deafness and I wasn’t sure why. I’ve been Deaf for my entire life. I’ve never known not being Deaf. I’ve never known being able to understand anybody without looking at them, or following the television without subtitles. It’s completely normal to me to be Deaf. But why have I been getting frustrated by it?

I don’t mean frustrated by being Deaf – that’s something that is just me and I’m fine with – Hey I live and breathe Deaf. I mean being frustrated at my deafness and the struggles that come with it and I think it comes down to business.

Which is why I struggled yesterday and found myself wishing I wasn’t Deaf yet again. It’s so rare for me to wish this, incredibly rare and I feel almost disloyal to my identity and the Deaf community wishing this ever so rarely often, but whereas I had a great day and loved everything about it as far as taking photographs is concerned, not being able to understand people easily generally, not being able to hear the humanist minister conducting the ceremony so to know when to get ready for the ring/kiss shot, not understanding the banter during the speeches so to know when to get the laughter pictures or pick up on conversation between staff discussing what was happening next made it hard and this on top of the difficulties I have at following at networking events which is a huge part of the Wedding Industry these days, makes having a Photography Business when you’re Deaf quite a lonely hard slog.

It’s all worth it though. Seeing my beautiful bride and handsome groom yesterday, shooting their special day and viewing the pictures afterwards makes it all worthwhile. I am very proud of my little business, I’m hoping I’ll go far. For now, I’ll cope with being a little bit weird, sometimes being a little bit weird helps that creative eye ;-) and I need to remember that.

So I’ll leave you now to enjoy my Magners (isn’t that Irish?) in my Scottish pub with my very English husband to make the most of our time left in this rainy part of town. I will probably speak to some more Scottish people before we make our leave by train 6.5 hours south and there will be a lot of “Pardon’s” said but what I’m going to remember is that it may be difficult for me to understand, but an accent makes somebody belong somewhere and provides identity and perhaps I need to explain more often why I’m finding it hard. Hopefully they’ll recognise my accent to be Midland with a twang of Brummie after all, next to being Deaf that’s who I am too :-)

See Hear

Did you see me on the telly today? I was quite pleased with how I came across although I don’t think anyone likes seeing themselves on the telly much!

It was very interesting to see the other perspectives, and as a whole i thought it was a very well put together programme.

If you’d like to catch today’s See Hear, looking into different experiences with Cochlear Implants plus previous episodes, you can catch up on iplayer here

Let me know what you think!

‘Don’t we live in the digital age?’

… said a deaf friend today.

It’s been on my mind for a while to be honest, I’ve been getting more and more fed up with the lack of flexibility with companies and local services inability to apparently operate by email as well as telephone.

For some services there are understandably security issues, such as banks and credit/loan companies which require talking to the account holder only but I won’t get started on that, I had quite the rant about a friend’s experience with her bank in my column in this month’s issue of the Hearing Times (seek it out) so I’ll stick with the general day to day services out there for now.

For example… Lets look at my experience at trying to find a supplier to fit a composite door for us as our front door was rickety and not entirely secure enough for my liking. It was easy enough to find a door but funnily enough to arrange for a fitter it needed to involve a telephone call to get a fitting quote from a local handyman.

The contradiction here, which I have mentioned before, is why can’t an email be replied to by email? A telephone call is often returned, but an email, especially by way of contact forms on websites, require a telephone number to be entered, and a valid one at that for response.

What is the use in that? Being the only option, that is. Why can’t there be an option to say whether email or telephone is best for the person making the enquiry? You’ll be checking your email anyway to see that a contact form from the website you are listed on has been completed afterall…

I appreciate that the number of tradespeople willing to communicate by email may lessen compared to those who use telephone but quite frankly-its better than no-one and I’d rather pay someone to fit my new door who has that flexibility.

I do wonder why it’s this way. Is it lack of awareness of laziness? Is it because they are out and about a lot so actual sitting at a computer eats into their working time? Or is it that they think we’ll find a way somehow… well we do I suppose. My husband in this case, took the calls. But what if it’s a Deaf couple with Deaf parents and Deaf siblings?

I fully appreciate that there are many people with many different kinds of disabilities out there, and it is difficult to cater for everyone. But many people with a disability can still pick up a phone. Deafness is often a forgotten disability when it comes to making websites and information accessible.

While I’m on the subject of accessible information, I recently attended a huge exhibition at the NEC. There were also some seminars which you could attend. A friend of mine emailed the organisers to see if there was any support for deaf people in these seminars, but had no reply. Not even an acknowledgement. It’s one thing having no provisions in place for a deaf person, in which case I would have had to just simply find my own; it’s another not replying altogether. So I missed the seminars.

We are not trying to be difficult, we are quite simply trying to lead an independent life. We are totally capable of doing so despite obstacles we have to overcome. This is a modern world where equal rights for all is a legal requirement. But as my friend pointed out… her full sentence being: ‘Not being able to hear on the telephone shouldn’t be a problem… don’t we live in the digital age?’. Well… Precisely. It’s a simple thing. It’s the little things. And now I’m going to work out what I can do about it.

Oh and excuse the brevity and possible typos of this post, my first ever post published via an app on my iPhone! See… Technology has come a long way in the last few years let alone the last 100. Why can’t a simple email function be more available too?

A date for your diary

A few weeks ago, I was contacted by a member of the SEE HEAR team. For those who don’t know, SEE HEAR is a magazine programme which covers all aspects of Deaf and Hard of Hearing current news and affairs. It has been running now for nearly 30 years. I know this because for some reason the fact that the first SEE HEAR programme was aired just days after I was born, has stuck in my head as a random piece of stored away information in the back of my brain!

So fancy that, I wonder if they will mark their 30th birthday? I actually remember meeting Clive Mason once at a playscheme for Deaf children during my school summer holidays when I was about 9 or 10 and I remember him being quite the celebrity. I remember we went swimming and I got a little out of my depth and he rescued me. What a memory to have!

Anyway, to the point – SEE HEAR contacted me as they were interested in my Cochlear Implant story. They came to my house and filmed me in the kitchen (cue me putting the washing up away asap) rambling away hoping hard I was making sense. A lot of what I say won’t be news to my regular readers, but it might be interesting to see me talk about it in person anyway. The show will cover all aspects of the CI, including positive stories and I imagine those at the start and possibly end, of their CI journey.

The episode will be aired at 1pm on 6th April 2011. I appreciate a lot of people will be at work at the time, but it will be available to view on iplayer afterwards as well. Or you could set your player to record!

I was very nervous being filmed, and I will be very nervous when it airs. Not least because I will not see the show before it’s shown on TV. I’m quite nervous about my signing – which I know is ridiculous. The problem is, when I’m nervous, my signing goes to pot (as does my spoken word) and I am hoping hard, I am understood well.

I would also like to point out to any potential viewers of the programme that I have lost weight since it was filmed… if I look like a bloated whale, I certainly don’t look as much like one now as I did Winking smile  and anyway, doesn’t the camera add on 10lbs?

In all seriousness, I hope you will watch it and not just to see my small part in it, but to listen in on other people’s experience of the CI as well. I am hoping as a whole, that the programme reflects every angle of the CI journey that people take. I have confidence they will actually, after having met the team who I have nothing but praise for after being looked after so well.

There you go – beans have been spilt. Let me know what you think!

What I saw in Solihull last Week

We love Solihull Town Centre, it’s our New Town Centre. Most importantly, it has a Giraffe! Which is quite possibly my favourite restaurant ever. So we go to Solihull if we want to shop now. You can’t go wrong with the Duck Stir Fry, ultimately yummy.

Anyway I digress. While we were waiting for the lift in the Car Park, I noticed some familiar hand waving a short few yards away. If there’s anybody signing within a 50 metre radius of where I am standing, you can guarantee my radar will start prodding me (well, it’s not going to beep is it?). Standing, waiting for the same lift as us was a little girl who must have been about 3, or perhaps a young 4 with her parents. She had beautiful blonde curls and the most adorable glasses over wide, curious eyes. This little girl caught my attention, not only was she very cute and was signing incredibly well, but she had a cochlear implant.

My first reaction was to stiffen, as although I’ve come to terms with my CI not working out for me, it can still sometimes hit me rather hard when I see one unexpectedly.

I quickly regained composure though, and tried to sign discreetly to my big girl; “look, there’s a little girl who signs like Mummy too”… only I signed too quickly and she didn’t catch what I said. I am SO disappointed in myself because, so not to draw attention to myself from the little girl and her family, I simply said “I’ll tell you later”. I really wish now, I had just signed it again, I have no idea as to why I didn’t, and would it really have mattered if they had seen me?

I think this may have come from years of private communication in public between me and my Deaf friends when in hearing dominated areas, and realising that it wouldn’t necessarily be private on this occasion. I normally don’t mind in the slightest, about signing in public – why would I after all. But I became self conscious all of a sudden and I’m regretting it now.

I did indeed talk to my big one about it afterwards though. We talked about how Mummy signs sometimes, and how I need to sign more often and I’ll start doing so from now on. We talked about how my youngest daughter’s first word was “rabbit” in sign, and how my eldest’s first sign was “light”. I came to the conclusion that I really do not sign enough. I’ve said it before but it seems so much more important now. I don’t need to sign with my family, but I often need them to sign to me. If want them to sign to me, I need to sign more to them.

What really touched me about this little girl, was her Mum and Dad. Obviously Hearing and obviously very learnt, in their signing, I felt an enormous amount of respect growing inside me for them. They were both such friendly looking people, and obviously had a lot of love for their daughter. They signed consistantly and clearly with a softness that only a parent could provide. They repeated after their daughter’s words, clarifying the instructions to wait. I was in danger of looking a bit strange, staring at them when thankfully the lift door opened.

Seeing that moment, has really stuck with me, even 2 weeks later just how lovely a sight to me it was. What was so wonderful for me to see, was that these parents had embraced their daughter’s deafness in such a way that it was their life. I imagined them finding out she was deaf, and the enormity of the information reaching them. I imagined that they learnt to sign, the very week they discovered she was deaf. I imagined that they researched long and hard into her Cochlear Implant, and I imagined how tough it must have been to see their daughter have an operation at such a young age. I imagined the challenges they faced post op, helping her learn while she was tiny, how to hear and how to talk. And here they were, in a shopping centre, signing as if it was absolutely normal to them. And it really was – of course it was. Their daughter understood every single word they said in answer to her inquisitive questions. As we drove away, in my head, I wished them well.

It’s the simple things that please me. I know that there are many wonderful parents who embrace their children’s deafness and throw themselves into making the needs associated with that deafness, normal for their home life. My Mother did just that, back in the 80s when I was diagnosed Deaf and I know others who do the same now. Some parents, even go the extra mile to put their experience to use, working voluntarily for wonderful charities which support new parents of children dealing with disabilities. (Yes Nicola Corazzo, I’m talking about you!)… these people are around, and they are the backbone of the support networks and happy families. But it’s still lovely to see it in person, and I suppose, unexpectedly.

I am determined to sign more at home now. It is incredibly precious when my daughters sign to me so I need to encourage it more. I can sign well, but I’m getting rusty somehow and tonight I realised that when I’m nervous, my hands go to pot. (I signed Dead for Deaf! For goodness sake!) I drove home from my meeting wondering when on earth did that happen? When did signing become second nature to me? It should come to me naturally.

If you’re in Solihull sometime, especially if you’re near Giraffe, and you see some waving hands on a woman with dark hair and blue glasses, come and say hello. It might be me Smile

One Year On

I’ve told people it was today, a year ago, that I was switched on.

Actually, as my Mum pointed out, the appointment last year was on a Monday, therefore it must have been Tuesday… alas, it’s still a year ago this week even if I’m blogging on the wrong day (I was waiting for today to write!)

I am finding it really hard to get going with this post. I’m very emotional today but that’s not just due to this anniversary.

It’s been a year though, a WHOLE year since I was switched on and wrote that first post utterly terrified at what I was hearing. As it turned out, what I heard through the implant that day didn’t change at all for months and months and in the end, we called it a day.

What was supposed to happen, was that the sounds I was hearing that day, should eventually have got clearer and clearer. Like they do for everyone else who has a Cochlear Implant. I’ve not met anyone yet, who had the same thing.

I still have moments of doubt, where I think “Did I REALLY give it a good go?”. Especially when I hear of CI users say about how hard they found it, and they talk about how they “pushed through it, gave it all they had, worked the hardest they ever had to work” and it worked out for them in the end making it all worth their while… this makes me feel like they’re implying I didn’t push through it, I didn’t give it all I had and I didn’t work very hard to make it work at all. But I really did, honestly. You know how much I wanted it to work.

I also have moments where I think “Why the hell me?”. Why also, did it happen, that only days after the consultant mutually agreeing with the audiologist and hearing therapist, and me, that we’ll call it a day, that the hearing in my very precious other ear, disappears completely resulting me with absolutely no hearing but unbearable Tinnitus for an entire summer?

Thankfully, and every so gratefully, some hearing did return in that ear once the Tinnitus subsided and I was able to make use of my hearing aid again. It’s not at the level that it was previously, but it’s still light years better than the Summer.

I went back to the audiology centre after I was confident that my hearing had settled. I asked them to turn my hearing aid up some more to try and recoup what I had lost. Unfortunately, I was told that my hearing aid was at the very highest it would go, and the blow was, there isn’t a hearing aid more powerful than the one I have now.

All my life, there has always been a better hearing aid to go on to. For the first time, I’ve reached the peak of technology. and cannot go further despite needing to. I guess if I had been someone else, the next question may have been “Have you considered a Cochlear Implant?”

You know what though? This may sound utterly daft. I’m quite happy now. It’s been a few months since everything went utterly pants and I have adapted. I love the word adaptation and the meaning through it – people really do adapt to their situation with a bit of positivity, can accept things for how they are. I decided that I would be positive.

Good things to be positive about include the fact some hearing did return after all – it didn’t have to! Other things to be positive about are, my friends and family will get me through whatever happens and I have an ACE Audiology team supporting me. I also have GLITTER in my earmould – could it be any sweeter than that?!

So I have adapted, I’ve got used to what I have now, and am making the most of it. Listening to music in the car will never be the same again, so I’m just jacking up the volume and feeling the beat instead. My children’s voices were very wobbly sounding and far too quiet for some time, but now I’ve just decided, that’s what they sound like. They’re still cute!

As for the Cochlear Implant, well I remain confident that it is still by far, the best hearing aid there is on this planet. I am by far, in the absolute minority where it hasn’t been successful. I still have absolute faith in the procedure. So much so, that actually – I still hope it’ll work for me sometime. As proved in the summer, and in my hearing history, my ears shift all the time. The amount of Tinnitus that I get tells me that! So perhaps, you never know, when things have settled down, I’ll give it another go – they may even have an even better processer to try with even more flexibility to make it work for me.

I live in hope, because I still have my life to live. I am 30 this year, I have to make the most of what I have, which is a huge lot. I might not have the hearing I hoped to have and the changes that I hoped the CI would give me, but I do have a huge amount of other things.

Here’s to 2011, and a different kind of switch on x

Being my Daughter’s Mummy

I have Live Writer! Yay! It went AWOL. I couldn’t post on the blog until it was re-installed. But due to running my photography business (www.bryonyclairephotography.co.uk) and the hectic few weeks approaching Christmas, I’ve only just had chance to establish just where it went, so again, apologies for the time its taken to write again.

Diving straight back into it…

My youngest daughter has been a little slower on the uptake with her speech. She has good understanding in context, she has words and sentences but they are not completely understandable even to the hearing ear, let alone my own. I have to say, I’ve been really sad about it. I was incredibly fortunate to have such a young and clear speaker with my older daughter, I could understand her right from the beginning with her early, clear speech. The terrible twos as a result weren’t quite as bad as normal. But with the Small One, it’s much harder to decipher what she’s trying to say, and the frustration is clear on both sides. She can sign, but she’s going through a phase of not wanting to. The Big One was the same, I just need to persevere with that.

I desperately want to understand my own daughter. She’s the funniest and most adorable little thing, her sign name is actually the sign for laugh, as she is so hilariously cheeky and funny sometimes. She’s obviously trying to tell me something but I can’t understand what. She also chatters away to herself when she’s playing and often, my husband or my Mum will tell me what she’s said, but I want to hear it for myself, or lip-read it for myself. I know it’ll come, I’m just not a very good waiter.

Today she started to tell me something but as I was making lunch, didn’t pay as much attention as normal. Until I realised she was being quite pressing about it. “Mummy, Pone! Mummy, Pone!” she kept repeating. It clicked after she’d said it a few times, she was telling me the phone was ringing. I went over to the phone and indeed it was, the light was flashing. I didn’t answer it, as we only have a phone line as it came with our internet package, we don’t use it to make or receive calls so the only calls we get are those of the chilly temperature. And all of a sudden, I choked a sob.

She’s not even 2 yet, all of three weeks and she’s already started to be my ears. The Big One, perhaps became my ears earlier than this, but she’s always seemed much older than her years so it sort of became more acceptable to me. For my youngest daughter, the baby, to all of a sudden “get” that she needs to tell me the phone is ringing, the gravity of the responsibility I place on my two children by default hit me somewhat.

They are very precious, my children. I’m incredibly lucky to have them, and that they are happy and healthy. But I do struggle with this “responsibility” that they have been armed with, through no fault of their own. I do worry that throughout childhood, they will see it as a chore. Them telling me the phone is ringing, or there’s someone at the door is quite cute at the moment, but in time, it’ll turn to what the shop assistant said, or what that tannoy said, or even, what I absolutely dread happening, that need to call 999.

The idea of my children ringing 999 on my behalf absolutely terrifies me more than the the idea of why I’d need to ring 999 in the first place. If there was an emergency and it was just me at home with them, I have often thought about what I’d need to do. What if I couldn’t leave the situation to go and knock on my neighbour’s door? What if I couldn’t absolutely guarantee that someone would pick up a text immediately? At the age that they are now, I think I’d risk calling them myself, I’d just repeat down the phone on a loop that I am deaf but this is what I need, this is why and my address in the hope that the message would get through. But there will be a time, perhaps even in only a year or so time seeing as my Big One is approaching five, that asking her to telephone for me would be the most reliable form of getting help. The responsibility of this, just doesn’t seem right for her to shoulder.

There are various text message services these days, but none are particularly well advertised, the campaigns I hear of, are always temporary trials, or trying to get the idea recognised. The numbers to text are different depending on where in the UK you are. I couldn’t rely on a text message, I would need to make a phone call.

How my little one telling me the phone was ringing, led the thought process right the way through to a hypothetical situation of needing to call 999 I don’t know, my mind works like that, always thinking about what I’d have to do, seemingly needing to be prepared somewhat. That’s mother’s nature I imagine. Only I have to think about the extra bit too.

I hope you had a great Christmas and New Year. I’m quite happy to be back on blogsphere. I am still writing for the Hearing Times which is an excellent resource of current news, affairs and stories for all Deaf and Hard of Hearing people and enjoying seeing my words in print!

If you have any questions about anything I have said over the last year or so, then please don’t hesitate to contact me by commenting on the blog, or you can e mail me at byps81@gmail.com. If you are interested in any of my Photography services, then there’s a separate e mail address for that at info@bryonyclairephotography.co.uk.

In the meantime, see you soon xx

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