She’s deaf and she’s girly! Follow Deafinitely Girly as she tackles a spinning class, spends time in the mountains and hears a baby cry. She’s funny, clever, positive and ready to tell you what being deaf and having fun in London is all about!
It's Deaf Awareness Week this week - it officially started yesterday but it was a Bank Holiday and I was having a largely tech-free day of wandering around London getting some fresh air.
But here I am today, raring to go.
This year is a little different for me. This year, I've made the decision to collaborate with a brilliant company on something very important - so look out for this content on my Twitter feed throughout coming days.
So there won't be much extra activity on here... but what I will leave you with is my list of Deaf Awareness Week wishes... if I really could have anything!
1 More subtitles... everywhere
It's no secret that Deafie Blogger and I have been working hard behind the scenes to try and get more subtitles at the cinema at better times and more movies - especially new releases. The steps to achieving this are small right now but we hope when the time comes, with the full support of the D/deaf and Hearing community, we'll be able to show that there is a demand for subtitled cinema and that hearing people are willing to attend them, too. We will keep you posted and when we yell 'CHAAAAARGE!' please promise you will, right into your local cinema to show it and us support. And please sign Deafie Blogger's petition if you haven't already.
It's not just the cinema though - I wish for subtitles across all streaming services such as NOWTV and ITV player. I wish for the ability to autocaption videos on Instagram and Twitter, without having to run them through an app first... although I am still mightily impressed by this latest development.
I wish for everyone who needs subtitles to be able to have them - at museums, doctors' surgeries, appointments, conferences, the theatre, talks, in education.
2 More accessibility everywhere
Plain and simple. I wish the world was more accessible for D/deaf people. I want the people in charge of health care, travel, employment, education, all public services - the list goes on - to take some time to look at how they can make all of this easier to access for us.
Sure most of us have learnt ways to hack the systems - I have FJM who is my ears even from 4,000 miles away, I have apps, I have customer services people on Twitter who I can reach out to, but it still doesn't change the fact that I am currently overpaying on my flat's contents insurance because the only way to negotiate it was on the phone and I couldn't do that and, at that exact moment in time, I didn't have the energy to 'hack the system' and find a way to do it. After all, hearing people don't have to do that. Why should I?
3 More awareness everywhere
A lot of the time I find my life is made difficult not because people are mean but because they simply don't know what the right thing to do is. Many people have never met someone with a hearing loss before and as no one size fits all with deafness, even if they had, chances are what helped that person might not always help me. I have always made it my policy to be as open as possible to helping people understand not just the generic ways of how to make life easier for D/deaf people but also to help them understand the quirks of my own hearing loss and how that means, they cannot group us together under one big label. We are all different.
My wish is that we continue to raise that awareness for people who are less comfortable or able to state their needs, which is why I'm going to be sharing all the deaf awareness tips I find this week on my social channels. There are some brilliant campaigns going on - so don't forget to have a google and check them out.
4 More employment opportunities everywhere
As a deaf person, I can count on one hand the number of times I've missed out on a job because of my deafness. But all three times, weirdly, the people chose to tell me straight out that it was because I was deaf. These jobs were not jobs where hearing was compulsory. But these people had made up their minds - a hearing person would be more efficient. I was out of the running.
The last time this happened, for a crappy little job, at a crappy little company, I took the time to write them a letter explaining why 'THAT WAS NOT ACCEPTABLE' and while I never got a reply, I hope that realising how close they came to a call from my lawyer, has made them approach who they employ slightly differently. In all honesty, probably not.
Right now, I am in an amazing job with the most insanely supportive boss. I have video calls with people from all over the world. I have had colleagues drive to Walmart in the hour before our scheduled call to buy a web cam because their laptop one is playing up. I can honestly say that this company I work for now sees my talent first.
And that's what I wish for everyone. I have no idea how we get there but these are wishes right? And sometimes wishes do come true.
5 More support everywhere
I am pretty lucky that on a personal level and indeed through Twitter and Instagram, I have an amazingly supportive network of people. People who, in the 11 years since I started blogging have been there through some insanely challenging times, picked me up off the floor, carried me for a bit when I've not felt like carrying myself.
Deafness can be incredibly isolating. It can be scary, frustrating, it can affect your mental health.
I wish that there is more support for anyone who needs it, however they need it. I appreciate it won't be easy, but I will do whatever I can to help. Because, as my friend and campaigner Deafie Blogger says, 'Deaf people can achieve anything they dream of, given the right support.' and she's right!
Happy Deaf Awareness Week peeps. And if I bump into a genie in a lamp, I'll tell him these five wishes. But in the meantime, please know, that I personally will be doing all I can to make them come true.
Wow, 2019! That means I am now in the 11th year of blogging here on DeafinitelyGirly.com.
When I started out, it was a bit of a therapy for me. It was a place I could have a rant about things, and when I look back, it's amazing to see how much of what I was ranting about has now changed.
The subtitles on BBC iPlayer are mostly flawless now. Back when I started ranting about iPlayer, they were practically non existent.
I no longer have to make horrifically stressful calls to utility companies or phone providers as much of it can either be sorted via live online chat, Twitter or if absolutely necessary, the NGT app on my phone.
But while all these things are marvelous, now is not the time to be complacent and I'm going into 2019 with a renewed vigour for change. It's not that I haven't been campaigning for it. More just not writing about it on here.
So in no particular order, here are my five missions for 2019 and beyond: 1. Continue the Subtitled Cinema campaign with Deafie Blogger
Last year, Deafie Blogger invited me to join forces with her and Michelle Hedley to try and get more open captioned showings of films in cinemas around the UK. Deafie Blogger had already set up a hugely successful petition by this point - sign if here - and it's already had more than 11,000 signatures.
Her determination saw us have two meetings with the UK Cinema Association, including one with representatives from the big UK cinema chains. And we are hoping that now the conversation channels are open, that we will find some way of increasing the open caption availability at UK cinemas - at more reasonable times.
And if we manage that, then what we need is your support. To go to as many as possible. To tweet about them, share awareness and get D/deaf people back into the UK cinemas. Currently, that's not that possible seeing as there are only a small number of subtitled films and these are quite often not at 'work-friendly' times.
2. Look into getting new hearing aids
Now, don't get me wrong, I love my hearing aids, but they are now quite old. I've had them for more than six years and in modern technology terms that's quite a long time. The last time I got hearing aids, my life changed dramatically. I got promoted at work - twice - and this gave me the confidence to eventually quit my job and write a book. Which then gave me the confidence to go back and do something on my terms, which turned into an even better opportunity, which then meant when a fantastically mind-blowing challenging role came up, I thought 'Yep, I'm going after that!' and I got it.
These hearing aids have enhanced my world in a way I never thought was possible. After spending my entire twenties not wearing hearing aids, my thirties were a revelation. But let's be clear... putting on hearing aids is not like putting on glasses. They don't make the world perfect. But they make it a lot more understandable. And if there's new hearing aids out there that could do even more, then I want to try them.
3. Sort out my book
Four years ago, I wrote a book. And then, as new job opportunities came along, I put it to one side to focus on building my career. It's still there at the side, but this is the year I am going to do what needs to be done to sort it out. You see, I've had some amazing advice on it. And it's advice I agree about. I just need to make time to prioritise sitting down and starting the edits, the rewrites, the plot changes and structure - NOT MUCH THEN - and perhaps my deaf romantic fiction character will make it beyond my laptop screen. The good news is, that no one has said my writing is crap. Just that the structure needs work. So that's something!
4. Catch up with new technology
Just as I want to see what new technology is out there in terms of hearing aids, I also think I am due for a refresher on what amazing technology is out there in general for D/deaf people. From apps for my phone to things around the home, I'm going on a mission to get up-to-date on deaf tech and make my life easier. Please let me know what you recommend via Twitter or .
5. Blog more
Yep, 2019 is the year that I am going to reconnect with DeafinitelyGirly.com. Not the daily blogs I did when I first started out 11 years ago, but perhaps four a month to keep you up to date on the things I am passionate about. In the last two years, while I was off getting married and living abroad, I've kind of lost the time to write about what's going on in the world of Deaf Girly, which is a shame, because so much of it was new challenges and discoveries for me as a deaf person. So there will be a retrospective series, while I bring you up to date. And it'll give me a chance to tell you about the time I...
Sometimes, just sometimes, I allow myself the chance to daydream about all the things on my deaf wishlist coming true...
It's a bit like when you daydream about what you'd do if you won the lottery, only better but sadly less likely.
Top of my list is getting accessible cinema for all D/deaf people. That means something that ticks boxes for as many deaf people as possible. Not just the boxes of 'reasonable adjustments'.
So yesterday, I sat there daydreaming about what it would be like to be able to go and see any movie I liked, whenever I liked. I imagined impulsive evenings with friends, last minute dates with FJM, being up-to-date on the office chit chat when they talked about the latest film or awards nominations. I imagined all the snacks I would buy - coz let's face it, for me, it's all about the snacks.
And then, I remembered that it was Monday evening, the day before Tuesday, which is, in Vue's own words, 'One of the preferred days for deaf people to go to the cinema' so there might be movie on that following evening that London Aunt and I could spontaneously go to as we already had a date in the diary.
Imagine my joy when I discovered that the chosen subtitled movie at Vue Westfield White City was First Man - the movie about Neil Armstrong and his journey to the Moon. As a massive space geek - I am one of those people with the ISS app who stands outside hopefully in orange-skied London trying to spot it whizzing over - I was SO excited! It was on at 20:45 too, which would give us enough time to grab a drink and bite to eat first.
I texted London Aunt excitedly and then hit 'book tickets'. And guess what?There were no tickets available. Why? Well, that Vue only puts its subtitled showings on in the smallest 40-person cinemas... so naturally, when it's a film's opening week, these are going to sell out.
As one of my Twitter peeps said, half the seats were probably booked by hearing peeps who didn't notice the 'ST' by the listing and would probably wonder what the heck was going on when they realised they were at a read-along screening. I really hope that those people don't walk out.
What's more, there are 99 non subtitled showings of First Man at Vue Westfield White City this week... that's 99 that hearing poeple can go to. In the bigger screens.
The sad thing is that this Vue is renowned for only putting on one subtitled showing of each movie it has. So that was my chance to see First Man... and because it's sold out, my chance has gone.
When I tweeted about this last night, the support was incredible. Not just from my fellow D/deaf peeps, who totally get my frustration, but from hearing peeps, too:
Hearing peeps who would like subtitles because they can't hear mumbling Hollywood actors.
Hearing peeps who have hard-of-hearing friends and would like to go to the cinema with them.
Hearing peeps who don't mind either way if every single film at the cinema was subtitled.
Hearing peeps who have partners whose first languages are not English and could do with subtitles to help them understand.
Hearing peeps who didn't even know that subtitled cinema existed because guess what? Cinema's hide it away like it's some dirty secret.
Hearing peeps who hear our cause and support it wholeheartedly.
Deafie Blogger and I had a great meeting with the UK Cinema Association during which they promised to open up the conversations between us and the cinema chains who insist that there is no market, that subtitled showings are not financially viable, that deaf people prefer going to the cinema on Sunday and Tuesdays, which is why there are only showings then, who insist that there's nothing wrong with putting the only subtitled showings on in the middle of the day during the working week.
And I welcome those conversations. Because right now, we have no choice, and it feels a bit like we have no voice. We are stating our case to people who are already converted and then it's falling on the deaf ears of those who really need to listen - except guess what? They're not deaf.
If you want to know what it's like to be deaf - at least my deaf - then remove choice from your life. Remove choice. Remove security. Remove access. And then spend every day fighting to get that choice back.
Remove it all and that's what it's like.
Sure, there are ways around it. And sure it's not the worst thing that can happen to someone. But it's happening. And it's exhausting.
I am exhausted of trying to explain why I am fighting for simple choices and changes that would enhance not just my deaf life but everyone else's, too.
UK cinemas please listen to us. Stop hiding subtitled screenings away like they're some dirty secret. Like you're ashamed. And support a community of people who really need you.
And if you'd like to help, then please sign Deafie Blogger's petition, here. Big thanks and Happy Tuesday peeps DGx
Regular readers and my followers on Twitter will know that recently I've been talking a lot about the lack of subtitled showings available at UK cinemas.
And I am not alone in my rage or my quest to change this. But we are hitting brick walls.
Anyway, last night, I finally got to watch Mamma Mia with subtitles at the cinema – Vue only provide subtitled movies on Tuesday and Sunday because apparently according to Vue, 'Our research showed deaf people prefer those days', which to me translates as
'The other days are important moneymakers for our hearing customers so we don't want to jeopardise this by showing films with subtitles.'
Of course, I might be wrong – but I have no way of confirming this, because Vue won't speak to us or offer any transparency on the issues around subtitles. And you see, for me most conflicts occur because of a miscommunication between two parties. So far our conflict is that Vue won't communicate with us at all.
But where was I?
Ah yes, dosed up to the eyeballs on Lemsip due to a sore throat bug I've had since Saturday but couldn't miss this only subtitled showing, I headed to the cinema to watch Mamma Mia. I've learnt the hard way not to buy snacks at the cinema anymore – the number of times I have had to dump open nachos or popcorn because the subtitles have failed – so I had a bag of home snacks and rather reluctant (because Mamma Mia really isn't his thing) but super supportive FJM in tow.
He laughed at my excitement as we took our seats and we scoffed our Maltesers before the trailers had finished. Then, as the opening credits rolled, he squeezed my hand – an amazing acknowledgement of how special cinema trips are for the both of us.
And then, the subtitles didn't work.
At first I wondered whether it was simply that they weren't going to subtitle the singing but then the speaking happened and still no subtitles. And so calmly and quietly, I put down my chocolate-covered raisins and walked out of the cinema to find someone to ask what the fresh merry hell was going on.
I quickly found a manager who in all fairness dropped everything to sort the issue out. While I was there, a girl in her early twenties who was also wearing hearing aids, came out of the cinema and asked the same question as me.
'This happens all the time!' I said to her.
'Does it?' she asked, 'I hardly ever go to the cinema as there are so few subtitled shows!'
And we stood there rolling our eyes at the whole stupidity of the situation.
Eventually the guy came back and said he'd sorted it, but the lovely girl I was with hadn't followed. He didn't clock this, so I let her know and we walked back to the cinema.
'I am so glad you were with me,' she said as we waved goodbye to head up separate aisle. 'I would have been so nervous to do that on my own.'
'It was nothing' was my reply and I meant it.
But as I sat down I realised that while now, I will boldly assert my right to things when they are not right and ask for things and vocalise my needs, 15 years ago I would have also been nervous.
I wanted to give that girl a massive hug and tell her that she should never be nervous and that I will ALWAYS fight for her, me and any other deaf person who needs fighting for.
As I sat back down and the movie re-started with subtitles, I grinned at FJM as he mouthed 'I am so proud of you!' at me.
And I was proud of me, too.
But I am not there yet. Together with Deafie Blogger and a few other amazing people, we are trying to get to the bottom of the whole subtitled cinema conundrum. While we have theories about the lack of subtitles, we want to hear from the cinemas themselves and get transparent truthful answers about why they think it's OK to tick the accessibility boxes in pencil rather than with a flourish of pink Sharpie pen.
Why by showing one or two crappy movies a week at completely inappropriate times of day – Deaf people have jobs, you know – they feel they are doing enough for us.
I just want to understand.
When the world is made accessible to me as a deaf person, it gives it a third dimension. It gives it colour, vibrancy, and makes it such a nicer place to be.
Yesterday, walking out of the cinema with FJM, so full from all the snacks, eyes puffy from all the emotion – MAMMA MIA IS THE MOST AMAZING MOVIE – I was walking on a cloud of happiness.
I'd had a date night with my husband at the cinema. It was wonderful. It was different to just watching Netflix at home. It means that I can now talk to my colleagues and friends about how brilliant Mamma Mia is. It's helped me feel more included and happier.
That's what subtitled cinema gives me. Not just access to the latest movies, but a third dimension to my life.
And if that's not worth fighting for, I don't know what is.
Want to help us fight? Sign Deafie Blogger's petition here and tweet your hopes, wishes and frustration about subtitled cinema using the hashtag #subtitled cinema.
Most regular readers of this blog will know that I'm pretty comfortable with my deafness these days.
I've got a job I love that I am fully supported in by amazing colleagues and my manager. I am pretty comfortable about talking about my deafness, too. Demystifying it. Putting it out there. Challenging people to think about what it's like for me. And I've had amazingly positive responses.
All these things are incredible.
One of the toughest things is that I cannot overcome the exhaustion. And the frustration of how much better I think I could be if I wasn't deaf.
So let's start with the exhaustion. It's hard to explain this kind of tiredness. After listening on a call for one hour and trying to lipread, I feel like someone has dunked my brain in treacle, put it on a spin cycle and then demanded it run 100 metres in a straight line. My arms are like lead weights. My eyes hurt. Speaking feels like I've had a tongue transplant. Tears are so dangerously close to the surface of my eyes that they could sprout at any second.
I cannot work out how to stop this tiredness. The exhaustion of my brain trying to piece together the few sounds I can hear and make intelligible sentences. My brain is fit. But even this is sometimes a marathon too far.
The thing is also, I want to be on these calls. They are fascinating, full of good chat, information, insight and I know that I can often add value to them. If I can just get through the exhaustion.
And then there's the frustration.
I know the cause of this exhaustion is my deafness. Ands this makes me FURIOUS. Except logically, the cause isn't my deafness. It's the listening.
The other day, I had to turn my camera off and mute the speaker to have a little cry not because I was upset, but because I was frustrated and cross.
This job is so utterly perfect for me. It's an amazing balance of pure geekery and creativity. It uses all my core skills yet pushes me out of my comfort zone. I am learning every day. I mean, jobs like these don't come along very often, do they?
But just sometimes, I allow myself to sit and think about how much better I could be if I wasn't deaf...
And then I berate myself for thinking like this because this is exactly the discrimination I have spent a lot of my working life fighting. And if I'm thinking it myself, how am I meant to stop other people thinking it?
So last night I sat down and wrote down all the things that make me great at my job. Instead of thinking about the floundering conference calls or the exhaustion, I focussed on the amazing relationships I have built around the world, of the creative work out there that I've been part of, of the ideas I have that change how we do things.
The list was good. It far outweighed the 'You're deaf' list. And actually if I am honest, a lot of my strengths can somehow be related back to my deafness.
For example, I am a massive self-teaching geek. Why? Because I never really heard at school. If I wanted to learn something, I had to sit down and teach myself. So now, when it comes to learning new things, I think I have strong advantage. My teacher is there, ready and waiting – in the part of my brain that doesn't get exhausted.
And I guess that's what I am thankful for. Deafness can be challenging, emotionally exhausting and downright frustrating at times, but it truly has made me me.
If I wasn't deaf, would I be so bloody determined to get where I want to go? Would I be so observant of body language and be able to read conversations as they are happening and spot the people who are unhappy or have feedback they can't express on projects? Would I take everything for granted?
I honestly don't know.
When I think back to the me, before I knew I was deaf, I was a different character. Before I went really deaf, I definitely didn't try as hard at things. I did indeed take success for granted.
So yeah, on this Thankful Friday, I am thankful for the fact that there are some amazingly good things about my deafness. And if you think about them long enough, they will always outweigh the bad.
Apart from my own wedding back in December, one of the best weddings I have ever been to happened 20 years ago today, in London.
It was the summer I finished my A-levels. I was 17 and had travelled down to London a few days earlier to hang out with London Aunt and London Uncle. It was amazing weather like this, too. I remember because I had this stripy skater dress that I wore with my DC trainers and thought I was so cool.
I was incredibly honoured to play the flute at that wedding - during the signing of the register. It was one of the last times I played my flute in public. Apart from my recital performance exam. Even then, I'd modified some of the notes to ensure I didn't miss them and sound like I was blowing into thin air.
I wore this amazing maxi dress from East. Pink silk with a floral print. I still have that dress and thanks to the 90s fashion revival occurring right now, it may well get another outing this summer!
That day taught me a lot about relationships and also weddings. It taught me that you can be best friends with the person you marry, that you don't have to invite a long list of extended family to watch you say I do, but that your friends will willingly cross continents to see you.
It taught me that it's incredibly hard to keep a straight face when one of the guests decides their wedding present is to sing a song, in a restaurant, after lunch, in front of everyone. And it also taught me that I really don't like cigars.
And so, every year on this day, I raise a glass to two of my favourite people and their amazing wedding. Twenty years... feels like yesterday.
But how do I deal with them all? Aside from medicating with copious amounts of chocolate?
Here are my deaf life hacks:
1. Streamline your shopping
I am not a massive fan of trying to interact in shops. There was the time I replied no to the 'Would you like a bag' question four times only to discover the shop assistant had been asking me to 'Enter my pin'. It was not a fun experience.
So now, when I go shopping, I use contactless, I take my own bags, and I use the self-service checkouts whenever possible. For things like shoes, where you have to try on things while looking at your feet, often with a hovering shop assistant, I buy them online.
2. Streamline your correspondence
I never, ever, ever, ever answer my phone. FACT. Every single place I am registered at - from banking to healthcare to education to work - has my email address. Also, I have voicemail so if it really is important - like the time I won a competition and they rang to let me know - they can tell me there.
And did you know, that you can text voicemail files to other people so they can listen. Something I do when on the rare occasion I actually get one. FJM is an excellent secretary! *beams
3. Streamline your life admin
I am a bit of a tech geek, but it's mainly because technology makes my life so much easier as a deaf person. I have all the various table booking apps for restaurants, not just in London but wherever I am in the world. I have Uber for taxis.
I have online booking set up for GP surgery, my bank manager has me on his email contact list, my hairdresser - well haha, actually I once tried to call him using the NGT Lite typetalk app and he hung up. He doesn't really do alternative technology. And so FJM calls him for me! But gradually, over the years, fewer and fewer things need me to use the phone, or hear. It's awesome. And the NGT Lite typetalk app - it really is very useful. If you haven't tried it already, do.
4. Streamline your social life
No, I don't mean cancel your plans and cut people out of your life. But consider what really makes you happy. I spent a lot of my twenties in clubs not hearing anyone and having a largely terrible time. There were amazing nights out in among those moments, but a lot of the time I found it really tough. Until I sat down and worked out what made those nights amazing and started to focus on that. For me, that's smaller groups, quieter restaurants and bars, one-to-one dinners, captioned theatre or movies.
Also, I accepted that being deaf is bloody tiring. Proper lie-down-on-the-floor tiring. And so I started to edit the amount of socialising I did in order to make time to get my energy levels back up. And there's nowt wrong with that. I learnt to let go of FOMO and focussed on things that made me happy, rather than the things I thought I should be doing.
5. Streamline your sound
Earlier this week, I tweeted about the fact that I can hear next door's Nutribullet but I can't hear a fire engine that is about to run me over. So many of you came back with 'I knowwwww....' and your own tales of what makes your hearing random or unique.
One of the best things I've learnt to do is say, 'I am having a quiet day' and taking my hearing aids out. Sometimes it's nice to slip back into that 2D world where everything is just muted and well, quiet. Other days, I whack on my hearing aids and crank up the volume and go out there and explore my 3D world in all its glory.
And then, there's the different settings on my aids - the sound recover for cats meowing in low voices, the T-loop for focussed sound on one thing without background noise, the music setting with sound recover off in order to safeguard the pitch of the instruments I can hear. Of course, I will never hear sirens or birds singing but it's my world. And I love it. But for me, the empowering thing is choosing when I have each world.
What life hacks have you discovered to make your deaf life easier?
It's Day Three of Deaf Awareness week. Gosh that's going fast isn't it?
I couldn't talk about all things deafness without covering education - but I warn you that this isn't the most positive subject for me. It's not something I find it easy to write about in my usual jovial manner. However, it turns out it's rather topical at the moment because apparently one third of councils in England are cutting a total of £4 million from their budgets for deaf children’s education.
That's £4,000,000 You can read more about what the NDCS have to say about this here but I have to say this genuinely terrifies me.
I can chart my hearing getting worse solely through how difficult I began to find school. In nursery before anyone knew I was deaf, I was always being told off for not knowing the words to the songs, because at that age I had not yet learnt to lipread, and the only way you learnt the songs was by hearing what the teacher was singing. But compared to now, my hearing probably wasn't that bad.
The primary years...At primary school, I was always in trouble for not listening. Except I honestly thought I was listening. I honestly didn't know that you were meant to hear everything. I didn't really know any different.
From the age of seven I played the violin. As I progressed up the higher registers, I genuinely didn't realise you were meant to be able to hear it still. I thought it was guess work.
At seven years old, I remember that I could still take notes from a TV programme... something one of my teachers was very fond of making us do. But by 10, I was struggling with this. And at that same time, my rents got a TV at home and noticed me struggling to follow that, too. And then I was told I was deaf.
I remember getting these massive NHS hearing aids. I was at a private school at the time and so there was no additional support. And actually, even if there had have been, I am not sure I would have allowed it to be given. I was pretty cross about being told I was deaf. It was my world as I had always known it. And so my hearing aids sat in my school bag and I continued to muddle through.
Deafness is an invisible disability. For my teachers, they soon forgot that I was deaf and went back to teaching me how they always had. Deaf children in mainstream schools must not be forgotten.
Once I knew I was deaf, things I'd always struggled with suddenly had an explanation. French listening for example - I discovered that the hard part wasn't meant to be the listening. Dictation it turned out wasn't a creative writing exercise... and sport... wow, there was a whistle I was meant to hear!
The secondary years...Once I went to a local secondary school, assistance was offered. I had a council lady come in and 'statement' me. I was horrid to her. But on reflection, I honestly don't think she was a very nice person either. But she did fight to get me support and I had a radio aid for lessons, which gave me zero clarity and massive headache.
Hearing aids back then didn't give me anything like what my current ones give me today. My world became louder and more uncomfortable. I got no more clarity of speech and no 3D hearing. Unsurprisingly, I rarely wore them.
Getting deafer...During the summer of my GCSEs, my teachers, my rents and I all noticed that my hearing had taken a bit of a nose dive. I noticed because remarkably, one of the ways I used to revise, from year 7 to 9, was by recording all my notes on cassette tape and listening to them as I went to sleep at night. It was a brilliant revision plan and I was mostly in the top 5 for all subjects.
In Year 10, this plan began to fail. I got 3 out of 23 for a physics test and was so upset by this I cried until I threw up in the science lap sink - I was not used to failing. But not only was I not hearing my own revision notes on tape, I was no longer hearing in class.
School for me began to feel like a free fall of insecurity. I stopped knowing what was going on. I stopped being 'clever' and started to struggle. Worse still, I also started to get very short sighted and in the weeks it took me to notice this, I had no way of seeing the board or lipreading either!
Gosh, school was fun.
Getting the support I needed...After my GCSEs, which were OK but not brilliant results, my rents pushed hard to get me more support from the local authorities and along came my wonderful note taker. She was a retired secretary and she basically ended up with a stroppy tired teenager and a LOT of A-levels as my school insisted that you took four.
She was amazing. She took wonderful notes. She kept me in the loop when I fell asleep and tried to get me through that first intensive term of Year 12. But I was struggling.
In the end, it was decided, because helpfully I was a year ahead of myself at school and only 15 when I started A-levels (I did warn you I was a super geek), that instead of doing four A-levels in two years that I would do three A-levels in two and one extra A-level in a year. And so that is what I did.
No time would be lost and I would still go to uni at the right age so I could hastily pursue my dream career. That was all I wanted to do. Head to London and write.
But really, my A-levels were not about learning stuff, they were about me learning how to teach myself stuff. I would sit in the lessons struggling to hear and then go home and have to read and learn all the notes my note taker took.
But without the class discussion or context to back it up.
It was hideous.
...but doing badly anywayMy results at the end of the first two years were neatly alphabetical:
I think I actually stopped breathing when I opened my envelope. Devastation didn't really cover it.
And then in my third year, I retook the D and sat another and turned them into CCCE... turns out the E for RE was as good as it was ever going to get.
School made me feel like the biggest failure. And I had support. I had a note taker and permission to fall asleep in class - something I regularly did.
Why support for deaf children is importantI do not even want to imagine what it would have been like without any support. Or if I had gone deafer at a younger age. I cannot imagine what it will be like for future generations of children who do not get the support they need - whatever that support is.
As I write this today, I am doing a job I love in a big global company. I have ticked some pretty big career boxes, accomplished some things I am incredibly proud of and fought plenty of deaf battles along the way.
Deaf children are not stupid. Deaf children - whatever level of deafness they have from the very mild to the profound - deserve the same opportunities as their hearing peers in education. They deserve access to the same resources, the same standard of teaching and the funding to ensure they have the technology to support them in their studies. No deaf child should be allowed to fall through the gap. No deaf child should have to sit in a classroom with no idea what is going on, feeling a lump in their throat as they realise they are lost. I used to regularly feel like this and when I watched The Silent Child with the final school scenes of complete isolation in a school environment, my heart broke.
Support however you can...I understand that cuts need to be made and pots of money are not unlimited but the idea that my education could have been even more challenging...the idea that without the support I had, I would not be doing this job that I love, makes me feel physically sick. What's more, according to this Guardian report, there are only 45,000 deaf children in the UK. Why is it not possible to provide support for them?
So this Deaf Awareness Week, look out for articles relating to cuts to deaf children's education, get involved in the discussion, find out how you can help fight for their futures. I'm going to. Happy Wednesday peeps DG
It's the second day of Deaf Awareness Week and today I'm making it all about me. Here are the 10 dos and don'ts about my deafness. The things that will make me happy, sad and mad!!
DO remember that deafness doesn't define me It's part of who I am but it's not all I want to be remembered or known for... It's a fine balance between understanding my needs and assuming those are my only needs. It's hard to get it right. Even I don't get it right all of the time. However, that said, I'm pretty sure that 80% of my Tweets are food related and not deafness related. I don't make my life all about my deafness - EXCEPT DURING DEAF AWARENESS WEEK - and don't expect anyone else to either.
DON'T give me sympathy Believe me, being deaf isn't the worst thing to have happened to me. In some ways, it's one of the best things. So no head tilt, sad sigh or hand holding necessary. Unless I've just got off a compulsory phone call with the HSBC credit card fraud squad, in which case bring all of the above... and a large bottle of gin.
DO speak clearly and ensure I can read your lips That means things like ensuring you don't have your back to the light - otherwise all I can see is a fuzz of you surrounded by a halo. Great if I was painting you as a religions idol, but not great if you want me to actually follow what you're saying.
DON'T say "It doesn't matter" if I don't hear you the first time Actually don't say "It doesn't matter" even after the 50th time. It always matters. When I am struggling with something, I ask people to spell it, to give me the synonym. I never tell them it doesn't matter. Because it always does.
DO ask questionsSeriously, ask away. Ask me about my deafness. Ask me about the life hacks I have. Ask me what snacks I ate before midday - although maybe don't ask me how many snacks I ate before midday. Oh OK, it was three Milkyway bars and a Twix... but in my defense, I had a small breakfast.
DON'T shout I cannot stress this one enough. Ever listened to heavy metal? My Pa used to like a band called Napalm Death - and their lyrics were once likened to someone throwing up blood. When you yell, it distorts the sound. It doesn't make it easier for me to hear. And who wants to sound like they are throwing up blood, eh?
DO remember what you've learnt about making things easier for a deaf person You know when you go home and your ma gets all your favourite food in? Or you hit the road with your bestie and she's made a playlist of all your favourite songs? When you remember the things that make it easier for me to hear in the world, that's the warm and fuzzy feeling I get. Things like going out for dinner and your friend having your back when the specials are recounted at top speed by a heavily accented waiter and your friend simply says, 'Aaah you love beetroot and goats cheese - that's the starter for you!' while ignoring the lobster because 'Shellfish are friends not food,' instead of recounting the specials in front of the waiter without giving them any context and freaking them out.
DON'T assume because you know about my deafness, you understand all deafness You really don't. Some things will be applicable to other people and some things won't. I've said it many, many times, there really is no-one-size-fits-all for deafness.Sorry. We don't make this easy for you. But then, it's not exactly easy for us either.
DO get involved There are amazing charities that support deaf people in all areas of their lives and you don't need to be deaf to support them. You could sponsor, foster or volunteer for Hearing Dogs, run races to support Action on Hearing Loss, sign petitions to get better access for deaf people to things like cinema, and find out more about what incredible charities such as Sign Health do. All these charities and more have a wealth of information that will help you understand a little bit more about what sort of support deaf people need. Why not learn a bit more about BSL and how it works as a language?
DON'T confine deaf awareness to one week of the year It's not a novelty. It's a reality. For 466 million people worldwide... according to the World Health Organisation. That's a lot eh? Let's keep the conversations, ideas, innovation, acceptance, and changes happening 24 hours a day and 365 days of the year.
This week I am celebrating Deaf Awareness Week 4,500 miles away from London in a country so hot that I had to take out my hearing aids yesterday as I could feel the heat of the casing behind my ears. It's 44 degrees centigrade, people!
Anyway, Deaf Awareness Week is a brilliant time to find out new things about hearing loss and deafness, and I truly believe that there's something new for even people who having a hearing loss to learn.
That's the thing about deafness. No one size fits all. It's not like being short sighted, where you can put on a pair of glasses - prescription permitting - and it's all perfect again. It's not like a sickness we can all relate too, or a hip that aches in winter. All those things are easy to imagine or at least explain.
Deafness for me is so different to that. In my experience of meeting people with hearing loss, it seems that we are all unique. I can hear next door's Nutribullet, but I cannot hear someone in the same room as me unless I am about to read their lips. Fab Friend makes phone calls like a boss, but when she takes out her hearing aids, all hell could break loose and she would most likely sleep through it all.
My ma can hear birds singing, but ask her to watch a comedy show with canned laughter and she goes nuts as the laughter is all she can hear.
It's like we all get our own unique ways of hearing things, which is kinda cool if you think about it. But the only way we can get hearing people to understand is if we tell them.
However, it's not always easy to find the right words.
I remember my eureka moment in finding the words to explain my deafness. I was on a school trip to Lourdes in the south of France and we were attending a mass said in about five different languages. I was stood there in a sea of other students holding my candle when I realised that I couldn't tell my own language apart from the French, Spanish, German and Italian words. I genuinely had no idea which was my language. And that's how I started to explain my deafness.
'Without lipreading, I have no clarity of speech.'
Indeed, you could be speaking Guarani and I would have no clue unless I could see your face.
And then I did my post graduate course, which was four times more intensive that my degree in terms of lectures and listening. Around that same time, First Ever Friend came to visit and she came out with me and my friends from uni. Her first language was English but then she moved to Switzerland at eight and forgot her English. By the end of our evening, she was absolutely exhausted. 'It's so tiring listening in English' she told me.
And there was my second sentence:
'Listening is exhausting.'
As a deaf person I would rather do a 20km bike ride that listen for 20 minutes. It's the kind of exhaustion that makes you want to lie down on the floor and cry. And there have been real occasions when I have done just that.
Having these sentences are incredibly valuable to me. But I'm willing to bet that Fab Friend or my Ma wouldn't put these sentences at the top of their 'explaining their deafness' lists.
And that brings to me what I would like to celebrate on the first day of Deaf Awareness Week 2018. Our differences. Our differences not to hearing people but among each other. We are all brilliantly different and each have our own way of 'hearing' the world around us.
I don't hear sirens but I know one is coming because FJM usually starts shouting. That to me is still hearing. Just in a different way.
Yes, there are lots of things you can do that are beneficial to ALL many deaf people and yes, it's important that everyone is aware of that. But if you know a deaf person, take the time to find out a bit more about their own unique deafness. Find out the things you can do that can make their life easier. And learn something new this Deaf Awareness Week. Happy Monday peeps. DG