Monday, 30 July 2012

Deafinitely Girly at the Olympic Games


As a Londoner, I'm not really meant to be a fan of the Olympic Games. In the seven years since we won the bid, it's been drummed into me just how much it's costing me, what chaos my life will be thrown into, and how we couldn't possibly get it right and make it a success.

I remained detached from the hype. I didn't apply for tickets and the most excited I got was buying a Paralympic scarf from Next, but that was more because I thought it looked pretty.

I was indifferent.

Until last Thursday that is, when a colleague suggested we go and see the torch pass through Trafalgar Square.

The Writer was beyond excited about this suggestion. She was close to combustion as we made our way up to Trafalgar Square and then, as the police bikes went past, the official buses, the people, the cyclists and the the torch, I finally got it. This was bloody amazing and it was happening on my doorstep.

I didn't even get to see the torch that night, it veered off to the right just ahead of where we were standing. But as I joined friends for a drink afterwards and we stood in the heaving streets soaking up the atmosphere, I realised what I actually had was a free ticket to what could be an awesome party... a party that some people had travelled halfway around the world for and I really should be grateful for that.

Friday saw the Olympic Opening Ceremony. The Singing Swede and GBman threw a party. We ate Olympic coloured cupcakes (sorry LOCOG) and clapped and cheered as the TV screen was filled with once-in-a-lifetime images before hanging out the window to see the real-life smoke of the Red Arrows as they did a u-turn over west London.

Ok, the subtitles on the TV weren't great and I had a nap from G-S as the countries were parading out, but it was still pretty awesome, and as I finally got to bed at gone 2am, I had to pinch myself when I remembered I had tickets to the Games for Sunday.

You see, some of my friends caught the Olympic bug ages ago. They're faster learners than me, and so Penfold and Dangermouse had four tickets for the hockey. So they, along with me and Fab Friend headed over bright and early to the Riverbank Arena spectate. Ready for transport chaos, braced for queues. 

There were neither.

Instead there was a quick, crowd-free tube across the whole of London, a saunter up to Victoria Gate where extremely smiley security people met us and X-rayed our bags.

All day this happiness continued. When the rain came down in bucket loads, we donned bright orange recycling bags as skirts, which drew envied looks from wet-bottomed people and witty announcements on megaphones from games stewards. We were part of the party, and it felt great.

And the park? Well, lunch cost what it would in any London sandwich bar and there was no queue. There are tons of toilets and there was no queue. There are two big gift shops, with slight crowd control to get in, but so many tills and people organising you, that there was no queue.

Even getting into the hockey venue, there was no queue. Getting out again, there was no queue.

You're getting the gist of things here right?

And what about the match? Well we watched China vs South Korea – won by China, and then Argentina vs South Africa – won by Argentina, and both games were brilliant.

The rain bucketed it down during the warm up and stopped as play began on both occasions, and apart from a brief shower in the closing play of the final match, it was mostly sunny until we were walking back to the tube, but by that point we didn't care.

It's fair to say that I loved my Olympic experience. I went there, I did that, and I got a rather lovely T-shirt.

And truth be told, I feel a bit guilty about my 7-year Olympic grump. But then, to get it finally, in the awesome summer sunshine of central London last Thursday, well, I wouldn't swap that euphoria for anything.

Goooooooooo-oooooo team!

Thursday, 26 July 2012

Before I knew I was deaf…


Last night, while marvelling at how the heat in my bedroom was preventing sleep, I whacked my iPod on shuffle and attached it to the speaker that sits by my bed.

The shuffle selected Starship's 1987 album No Protection and suddenly I was catapulted backwards to memories of my 9-year-old self, dancing around the living room to Beat Patrol, the opening track.

I don't often reminisce that far back and the strange thing about doing this is that it was a time when no one knew I was deaf. Not even me.

Back then I was a 'hearing' kid. I played violin and wanted to be a professional violinist, I danced and wanted to be in the Royal Variety Performance. Hell, if Britain's Got Talent had existed in 1989, I'd have done everything I could to get on that show. One time at a pantomime when Lionel Blair asked for children up on stage, I clambered over seats to get up there… such was my enthusiasm.

Whenever I got the chance, I would book the living room, kick everyone out, move the furniture and dance to my Pa's CDs – Jefferson Airplane, Starship, and the Pet Shop Boys. I loved them all and listened to tracks on repeat. But my 9-year-old self didn't realise that there were actual words being said, so to this day, I don't know the words to a single track by any of those bands.

Remembering back to those days when I simply didn't know I was deaf gives me a bit of a clue about what I might have been like if I wasn't deaf – a chatterbox who quite happily waded into anything and didn't have once ounce of self doubt.

But then isn't that just part of being 9 years old? And I guess I'm also forgetting the downsides of being deaf but no one knowing. The teacher who gave me detention almost every day for a term as I was always the last one to stop talking when she said sshhhhh, the French listening exams I failed at every single time, the dictation in English where I thought half the challenge was to guess the storyline, and the whispered chat that girls of 9 love to have that I simply couldn't follow.

I also was rubbish on the hockey pitch as I couldn't hear the whistle, a disaster at netball for the same reason and never heard the rules of either as they were shouted across the pitch or court and I couldn't follow them.

Ignorance was not bliss.

Then when people found out I was deaf, I kind of felt like I'd failed something.

I got these HUGE hearing aids, which I wore in my pocket.

I had a hideous teacher who used to make me face the wall so I couldn't lipread her to make sure I was wearing them. I wasn't.

I liked my world exactly how it was. But in some ways, now everyone knew, it was better, because as at least now my French teacher understood why I was so rubbish at French listening and my violin teacher could work on different ways to keep me in tune.

I think though discovering my deafness meant I had to let go of a few dreams. The concert violinist one was first to go. but hey, letting go of your childhood dreams happens to pretty much everyone.

Last night, listening to Starship, remembering my 9 year old self, I actually felt pretty happy.

I mean I got the best of both worlds. I had 9 years of thinking I was perfect and the rest discovering that no one is.

Sounds like an idyllic childhood to me.

Wednesday, 25 July 2012

Changing the little deaf things


Phew, after a quiet few weeks, I think it's time for an update on everything DG.

I'm not quite sure why I don't blog anymore. Perhaps it's because I'm so happy and supported in my day job that I don't need to rant about my deafness in the way that I used to.

Indeed, my current company has done everything in its power to make my job feel as thought it was always meant to be done by a deaf person, and this is something I absolutely do not take for granted.

But it also means that days of weeping as I psyched myself up to make those compulsory phone calls have gone.

The conflict I encountered in other places I worked regarding my deafness has gone.

Therefore too, in a way, has my blog fodder.

Sure, there are still hilarious mishearing moments, and right now I'm trying to learn Spanish, but I guess this gets posted on Twitter in bite-sized pieces and where most of you guys follow me anyway.

However, with my life so sorted deafness wise – I'm nicely equipped with all manner of flashing and vibrating things and my iPhone is groaning under the gigabyte weight of all the useful apps – I'm looking at what I can do that will not only help me, but also other peeps, too.

And this is where my NHS campaign comes in. While the name of it is still in progress, it's actually ticking over nicely. Emails are being sent and responses from people are largely positive. I have a long-term plan, too, but for now, I'm just trying to plant the seed of thought about how bizarre it is that it's so difficult for deaf and hard-of-hearing people to easily access NHS services.

Indeed SuperCathyFragileMystic, an amazing GP friend of mine, has been job interviewing these last few months and one of her big questions at the end is 'How do deaf people make an appointment at your surgery?' and she gets met with mouths opening and closing as they struggle to think why they don't know the answer to this.

But really, I thought last week, while trudging through the rain under the umbrella I ran the length of Oxford Street for, why should I stop at striving to make essential services accessible?

What about seeing if I can make those non-essential but very enjoyable services accessible? What about video content online? What about augmented reality, QR code links and live streaming? I mean, I only notice how inaccessible it all is because I can't access it, but to the more-than-likely hearing people that have created these amazing things, they already offer them exactly what they need. These peeps don't realise that actually they could be reaching way more people if they just captioned the videos, or maybe even had a sign language option.

Wouldn't that be amazing? You hold your phone over an augmented reality page of a magazine and choose between a voice over, captions or signing.

And while sorting the sign language would probably cost money, there's no reason why the captions should. These are free and easy to embed on YouTube videos (tutorial to come) and look quite frankly bloody brilliant in action.

So you see this is my plan. I'm not going to scream and shout and point out the unfairness of it all. That would be like having an argument in a dream with someone then yelling at them about it in real life the next day. They'd be utterly clueless to what the hell you were going on about and then rather put out by the whole thing.

These companies don't necessarily know how inaccessible all these amazing new technology developments are, so it's not really fair to shout at them.

Instead, I'm going to just ask questions, Super-Cathy-Fragile-Mystic-style. I'm going to ask them how deaf people access their content and point out how easy it is to caption things.

Because you see, if you don't ask, you don't get. People don't sit around wondering about your specific needs, but if you point them out, they're more than happy to think about them. And if you point them out politely, they're even more happy.

No guns blazing, no tantrums. Just 'I love this idea but I can't enjoy it because…' and 'Could you please fix this by...'

With the big things in my life changed so much for the better, it's time to focus on the little things.

I'll keep you posted peeps

DG x

Friday, 6 July 2012

Deaf access update


Today is Thankful Friday and I am thankful that my quest to make NHS services more accessible for deaf people seems to be gaining momentum.

So far, I have had loads of feedback, supportive messages, offers of help and useful information given to me by all you lovely people on Twitter and through the blog. For the first time, in a long time, when it comes to improving services, I'm hopeful.

Not least, because I seem to have my contact from PALS on side. On the same day I emailed him, he said he would look into it and is now liaising with the equalities manager to see what can be done.

But things I've found out so far, is that many hospitals and GPs already use the vibrating disc system – Royal Free in London for example – and that lots of you lucky readers can book your GP appointments online.

It's really reassuring to know that not everyone faces the horrible challenges of trying to get medical help without being able to make vital phone calls or worrying you're NEVER going to hear your name called.

But, who am I to criticise the ancient ways of the NHS if I too am not bang up to date?

Which is why I've set up a Facebook page – a Deafinitely Girly Facebook page! How's about that, eh?

I'll mean, I can keep you up to date with my campaign when I don't have time to blog, and you can get in touch with me more easily than through the tricky Blogspot comments procedure.

So hit on me at here and click on that LIKE button… 

I would be very thankful on this Thankful Friday.

Cheers peeps.
DG
x

Tuesday, 3 July 2012

Deaf Girl takes on the NHS


My Twitter followers will know that at the weekend I had a fight with a cup of tea and lost, resulting in a big burn across my stomach, which was level with the kitchen work surface when the boiling water went flying towards me. Not only did it hit this bit of me, but it also went down my jeans and onto my feet.

I was in pain and in shock and my two brilliant friends who were there at the time sprung into action, yanked all my clothes off and threw me into a cold shower for 20 minutes. It was only after about five minutes of standing in the bathroom looking at my increasingly blistered skin that we realised that I was standing in a cold shower, without clothes on, with two of my best friends staring at me.

At that point, despite the pain, we all burst out laughing and they then left me to the icy water and went and cleaned up the scalding stuff on the kitchen floor.

It soon became apparent though that this was not just a surface burn, so off we pottered to the Minor Injuries Unit. It felt like I had a 100 toy soldiers stabbing me with bayonets in the stomach – it was that kind of repetitive niggling pain. 

Randomly, it affected my lipreading abilities – possibly because I couldn't concentrate – so PentHouse and First Ever Flatmate became my ears. They answered all the usual questions then made sure I knew what was going on as a marvellous nurse dressed the burn.

In short, they were amazing. They found me painkillers, they poured me wine, they checked I was still alive in the night when the combination of the former and latter made me fall asleep on one of their husband's shoulders in the car on the way home from dinner.

The next day, I ended up calling in on SuperCathyFragileMystic – who happens to be a brilliant GP. I asked her if she'd help change my burn dressing and she willingly did, while confessing that she'd never changed a dressing before. She also advised me to get a nurse appointment at my local surgery for a new dressing in a few days.

Regular readers will know that my GP surgery is amazingly inaccessible to deaf people. The appointment system is phone only and there's some weird thing where you have to call from 7am to secure an appointment for that day. Not practical for deaf old me.

In the end my boss at work rang about 11am. There were no appointments left. 

I then remembered a walk-in centre and looked up my nearest one. It was in a hospital. I did some research and checked that dressings could be changed at walk-in centres and set off. On arrival I asked if I was in the right place. 'We don't do dressing changes here.' I was told bluntly, and was told I needed to be two miles down the road instead.

Gutted, I broke into a jog to make sure I got there in time, as it had shorter opening hours, and arrived, sweaty and out of puff and probably looking far too healthy. The waiting room was empty. I was thrilled. I spoke to a guy and got that glazed look of 'Whatever' when I told him I was deaf. I filled in my form and waited and waited.

The waiting room began to fill up.

I read the sign on the wall that said patients were seen on a first come, first served basis unless it was an emergency. And waited and waited.

I knew that my burn dressing wasn't an emergency but when a lady with a stye on her eye came in 30 minutes after me and was seen 20 minutes later with me still waiting, I began to wonder if I hadn't heard my name being called. 

You see, the set up was almost circular. There were doors at all angles. People came out and seemed to mumble a name before disappearing again and I had no idea if they wanted me.

I went up and spoke the the receptionist and asked him where I was in the queue and reiterated my deafness. He said I would be soon.

I waited and waited.

Again, I began to worry I hadn't heard my name so I popped up again and asked him where the nurse I would be seeing would call me from. He pointed this out and I found a chair straight opposite.

Two-and-a-half hours later, I was still waiting. I hadn't read my book the whole time for fear that I wouldn't hear my name and no one would tell me it had been called, I had been sat simply staring at the doors the nurses came out of in the hope that at some point I would lipread my name.

But what that time did give me was the opportunity to think about how utterly appalling the whole experience was. I mean, I told the guy twice I was deaf. I didn't write it on my form because there was no appropriate place to, but he could have passed the information onto the nurse, however he didn't.

There was no other way of knowing that my name was being called. And the earlier palaver of only being able to call my GP for an appointment was also starting to frustrate me even more.

But what can we do to fix this?

One of my marvellous Twitter followers pointed out that they can't put names up on a screen to call them as this is apparently a breach of data protection. But what about a vibrating pager like the ones you get in food halls that go off when your order is ready so that you can go up and collect it. If it can work in a busy restaurant, surely it could work at a walk-in centre. 

Or as another marvellous Twitter follower suggested, what about utilising the text message system that we already have on our phones. I mean I get a text from my hairdresser now reminding me of my appointment, so why couldn't we receive a text alert to say that our name had been called or we were at the front of the queue?

What I want to know is what services are already out there for deaf people in the health service that work? In America, in the UK and wherever else you marvellous readers are. By finding out what works, I may be able to work out what's missing here. Please let me know.

And those of you in the same position as me, please tell me what you'd like. I'd like the NHS to sit up and take notice of deaf people and create a service that is easily accessible, from the GP to consultants, wards to operating theatres but what else? Please let me know.

It occurred to me as I was sat in the waiting room panicking that I hadn't heard my name, that each experience of the NHS makes me want to use it less and less. The difficulty with getting a GP appointment means I don't go when perhaps I should. If others are doing this too and vital symptoms are missed, then couldn't this be the difference between life and death?

Would I not get that mole checked because it meant asking a friend to call for me at 7am? Would I let my Crohn's get to hospitalisation stage because I simply couldn't contact my doctor myself? Quite possibly and that's shocking.

Something has to change. If I can book tables, haircuts and holidays online, why can't I book GP appointments? I know that some practices allow this, but in my borough there is not ONE deaf accessible GP surgery, and there is only ONE that is open early and late enough for me to pop in, in person and make an appointment – and it's not that near where I live.

And if I can get texts and vibrating pagers going off to tell me when my lunch is ready in a restaurant, car is ready for collection and the next bus is coming, why on earth can't the NHS provide this, too.

I know it's a stretched service. I know that people are dying before they get treatment, waiting lists are long and people are underpaid, but all I'm asking is that deaf people are given the same opportunities as everyone else to access and use the NHS. And if that's too much to ask, then I have no idea what the future holds...

However, perhaps if I can gather this information, lobby the right people, raise awareness, tweet, nag and general be the annoying deaf girl that I am, then perhaps we can change things. It'd be amazing. And if you know someone who's already doing this – let me know about them, too.

It's time to take a stand. Who's with me?