Starting University... and wearing my hearing aids for 17 hours!

This was first published on the Limping Chicken :) 

I’m writing this sat in the laundry room of my university.

From what I can work out there are 3 washing machines and a tumbler dryer on the go but all I can hear is, well, nothing. This is what I love about university. I woke up this morning and looked at my hearing aids before thinking – “you know what, today I want to be Deaf.” Nobody stopped me, my parents didn’t nag me. There wasn’t even a particular reason, and even though I can’t hear anything I feel perfectly safe because for the first time I have a pager in my pocket which I know will vibrate like hell if the fire alarm goes off.

As well as all this silence I’m feeling amazingly awake, buzzing, and full of energy… Despite having two hours of lectures already today I don’t feel like I’m in information overload – the reason why? Oh, well I have an interpreter now! In terms of academics and support I’m loving it! After years and years of battling for support in a mainstream school, with a council that never seemed to come through with support even when it was promised, I feel like I’m on cloud 9 right now. This is another thing I love about university.

I’m not going to lie though; there have been moments when the tears have spilled over and I’ve sat in my room with my hearing aids out wishing and hoping that another deaf person will just walk through the door and start up a conversation with me. You see, although I have enormous amounts of fantastic support within university outside of lectures it’s just me. All on my own. My university is actually split into three campuses – North, South (that’s me!) and Millennium Point – and although there are apparently a couple of other deafies up at City North, here at South I’m the only one.

In the long run I hope this won’t matter too much, that people will become more deaf aware and that the university will hurry up and organise a deaf social event like they’ve promised! But at the minute it means that for the first time in years I’ve felt almost (shock horror!) like a hearing person…
Whereas I would normally do as I’ve done today and spend any free moment hearing aidless I realised last week that what with moving in, talking to new people (scary!) and going out for Freshers I’d actually had one day where I wore my aids for 17 whole long hours… That has to be some kind of record! I found myself sitting in conversations, where I couldn’t hear much of what was being said, debating the benefits of stem cell research and cochlear implants… Scary thoughts for someone who’s always sworn blind they would never consider them! Not that I’m saying I would – but I’m really starting to see why people would think about it!

In the defence of my lovely and wonderful flat mates, and flat next door mates, they have made an effort! Nearly all of them now know their names in sign, as well as various things such as “hello”, “good morning” and amusingly “where are the tea bags…?” So I can’t fault them for effort. But I think it’s more of a general misunderstanding about the complexities of not being able to hear half of a conversation, or not ever having had to think about how tiring it is to lip read a conversation all day. But I do love them all to bits, and I hope that over time they’ll become fluent signers or at least incredibly deaf aware!

To look back over my past week I have to say that moving in day was the most daunting experience, a flat full of new people who could have potentially been horrendous to lip read was never going to fill me with joy! But I do seem to have lucked out – so far all my flat mates have been easily lip readable!

I suppose the funniest moments have been in clubs where at first I felt even more isolated until I realised that people’s deaf awareness increases ten-fold. Suddenly texting on phones when you can’t understand is acceptable and normal, and using gestures and signs is common place! I even found I had an advantage – lip reading skills are very useful in a club!

I guess in conclusion I should say that after a week and a half I both love and hate university. I love my support and my friends. I dislike the general lack of deaf awareness, but I applaud the efforts made by everyone I know (well most of them…). At the same time I do hate not having my deaf friends around me – I find myself overjoyed just to have an appointment with my disability advisor and actively seeking out speech and language therapy students or pretty much anyone with sign language skills!!

I’m sure that overtime things will improve and so for now I’m staying as positive as possible! But if you’re reading this and you happen to be a deaf person living in Birmingham please do get in touch! I would love a coffee with another deafie!! 

Writing for the Buzz -Pimping My Hearing Aids And Cochlear Implants

Our group were recently given the opportunity to write for the NDCS Buzz to promote our group and give others the chance to learn about decorating the hearing aids and cochlear implants! This is what will be published...

Do you think your hearing aids or cochlear implants look dull and boring? 

Would you like to make them individual, funky and fun? 

Why not try customising them? 

By using small stickers or gems you can create a look that’s unique to you; or if you want something even funkier you can use nail foil stickers to cover the whole of you hearing aids or cochlear implants! (Don’t cover the microphones!) 

You can also use printable sticky paper to create your own designs or use Tube Riders, Skinits or Ear Gear! 

Pimp my Hearing Aids and Cochlear Implants is a group set up by teenagers (with help from some parents!)  who felt that their hearing aids and implants were uncool and wanted different ways to show them off with bright colours and awesome designs! The group has grown and now has nearly 300 Facebook members who share pictures of their jazzy aids and implants or share advice about new ways to customize!

Pimp my HAs and CIs Facebook Page

Pimp my HAs and CIs new blog!

Skin-its for Advanced Bionics 

Connevans Ear Gear 

Tube Riders :) 

Deaf Gerbils...

So yesterday the press (and Action on Heairng Loss) published a story which has - yet again - brought the Deaf community together in what has mainly been shock and sadness.

The BBC news story Deaf Gerbils hear again after stem cell "cure" has sparked interesting, if a little outraged, debate on social media. The story claimed that over 10 weeks of being injected with stem cells and such like the Deaf Gerbils could hear on average 45% better than before. And as the story reports "It would mean going from being so deaf that you wouldn't be able to hear a lorry or truck in the street to the point where you would be able to hear a conversation. It is not a complete cure, they will not be able to hear a whisper, but they would certainly be able to maintain a conversation in a room."

But the question I know I immediately asked was what on earth will happen to our amazing Deaf community and to BSL as a language in its own right. Will it just die out? Will the 90% of deaf kids born to hearing families really never know what it means to be deaf? Or will parents think of the future and wonder how their child might be if they were allowed to be deaf... 

Because I was interested in the story I posted it around Facebook. On my own page I got the kind of predictable "Oh my Gods" and the normal arguments against a "cure" for deafness from my deaf friends. And the normal misunderstanding from my hearing friends who couldnt work out why anybody wouldnt want to hear.
In a kind of sweet way a friend of mine going to university to study medicine promised never to allow a family with a deaf child to make such a massive decision without contacting NDCS first. (See! There is hope for the hearies!)

It was when I posted the story on the NDCS facebook page that I was a little shocked.. Straight away I had a comment telling me that the research was amazing... and the overall opinion did seem to be that deaf children were part of a hearing rather than deaf community... and that they didnt have much of a deaf identity.
I did think it would be interesting to know how many of these children also had cochlear implants?

I do have to stress though that I know several "NDCS Mums" who would never dream of "curing" their childs deafness and are proud of their deaf child and what they achieve.

However perhaps the most disturbing thing was the message I had when I woke up this morning... (From someone Ive never spoken to and dont know.) Telling me how evil I am for wishing deafness on could be hearing children... I mean Ouch. I dont wish deafness on anybody! I just think that people need to see deafness as more than just a medical condition. Its a culture, language, history etc...

The twitter debate #DeafGerbils has been predictable really... The people I know are mainly members of the Deaf Community in a big way and there have been some funny comments and cartoons - including the picture below.

I did have an interesting discussion with one person about the similarities between the arguments about stem cell "cure" and cochlear implants. We agreed that actually the pressure put on families by ENT consultants, audiologists, ToDs etc has a massive impact on the choices parents make. We already know that some audiologists and consultants are openly still preaching against BSL use which I think is unforgivable.

From what I've understood - which is limited by my scientific knowledge - if someone did gain funding etc to continue this research it would be many years before it was successful enough to even be trialled on humans.
Thats great because it gives us plenty of time to campaign against it and show people the reasons why deaf people love being deaf! As someone told me earlier, there needs to be a greater focus on raising deaf awareness so that when a deaf child is born to a hearing family they have some basic knowledge of deafness.

Unlike some people I do have a slightly random aside view to all this... As a person with progressive deafness I can understand that there might be some newly deafened people out there who did want their "sound" back. I think if you're an adult who suddenly loses all hearing, or an elderly person with age related hearing loss, maybe this idea of a "cure" suddenly looks a lot more promising...

Anyway - If you want a particularly interesting film to watch about the -dangers- of a "cure for deafness" I totally recommend watching the film The End, by Ted Evans. Its a remarkable piece and made me cry when I watched it - I think it sums up the fears of the Deaf community perfectly.

Our Local Celebrity :)

So normally this blog discusses issues relating to deafness etc, has a good moan and chats about how much I love decorating my hearing aids.
But I thought for a change I would introduce you to an inspirational deaf friend of mine.

15 year old Tilly was diagnosed as deaf when she was a baby and has overcame many barriers to gain a place at Chethams School of Music in Manchester where she is a boarder. (I should add that there are other deaf students at Chethams!)

This year she auditioned for, and was picked to be, a part of the Paralympic Paraorchestra! An amazing opportunity to play alongside other disabled musicians as well as Cold Play!

She also got a chance to show off her blue ear gear and hearing aids to a national audience... A great way to raise deaf-awareness! 

Tilly, who plays the viola amongst other instruments, told me "it was an amazing and unforgettable experience, I love the orchestra and will be continuing with them and it was inspirational. Just a very emotional night!"

Serious kudos to Tilly for being an amazing role model to other deaf young people wanting to learn to play an instrument. A great example of how being deaf should never hold you back and that you should always reach for your dreams!

Well done Tilly, we're all very proud of you!

A business proposal....

So, I think I should go on Dragon's Den.

My pitch I hear you ask; well its been gradually brewing over the last few months. Over the past few months the idea of decorating hearing aids has gone from a pet project belonging to a few Mums to something wide spread and massive, crossing the Atlantic and bringing together parents and teenagers on Facebook as they search for the latest cool nail foil/sticker design.

But as time has gone on and the market for hearing aid decoration has increased I've realised that the whole process would be a lot easier (and make someone ALOT of money) if there were specificly shaped hearing aid stickers made from the same material as nail foils. These could easily be available in a range of colours, patterns etc and with a bit of work i'm sure the stickers could soon be made available in a range of sizes/fits.

I'm not saying it wouldn't be difficult... To start with I reckon that on the Facebook group alone I've probably seen close to 15 different makes of hearing aid - Phonak and Oticon are of course the most popular companies but there are also a lot of Siemans aids around and even something called Danalogic... And all these companies make more than one type of aid... So of course a lot of market research would need to be done. However in some cases two hearing aids are (we have discovered) the same size and shape (Phonak Naida and Nathos being the obvious example...).

There are other difficulties of course... With my own hearing aids the battery door has to unclip from the rest of the hearing aid and therefore you need two stickers in order to allow it to open and close...

However I reckon all these difficulties could be overcome to create an amazing and special project or even business for somebody with the ability to take it on! There is definetely a huge market out there and lots of opportuntites to sell products through facebook, webpage and even connevans (like Ear Gear do) and possibly the hearing aid companies themselves.

I also think there are lots of opportunities to branch out as well - lots of people in the group complain that their cochlear implants are boring so maybe cochlear implant decoration would be something to explore. I've seen loads of amazing designs with flowers on the coil or sparkly diamantes so they look more like hair clips!
I also decorated my radio aid the other week which has made it look tons better!

So - for any bored people out there who have the skills, or would be willing to learn the skills needed to make nail foils into the right shapes for hearing aids we need your help!!!

No seriously... Get in contact :)

Kathryn Wilkins - The new Deafie on the block...

So my friend Kat who has written a couple of posts for this blog has now started her own blog writing about deaf issues and ideas as well as her life from the point of view of a deaf teen!

To visit her blog please go toooo... kathrynwilkins16.blogspot.co.uk

This is just a sample of some of her writing...

After doing some research into a well-known deaf model:Fletch@, reading about Louis Tomlinson's new found "deafness" and simply talking to deaf friends I started to wonder  what are the connotations of the word "deafness", what does it really mean?

Well, deafness goes across a wide spectrum: from mild to profound and within that spectrum are many different levels, and every individual's needs regarding deafness is unique. Some people choose to use BSL, some choose to speak and some choose to use a combination of both. There are hearing aid users, cochlear implant users, BAHA users and some who choose not to wear anything. Unfortunately Cochlear Implant's do spark a bit of controversy within the deaf community, but I'll leave that for another post! As you can tell, the deaf community is diverse, so being deaf doesn't always necessarily mean that you cant hear-full stop.

So why do we have to tick the disabled box on forms, just because we're deaf-we can still do everything that hearing people do so why should we let our deafness get in the way. We're not disabled, we're able to do anything. I personally think that deafness is separate to disability, we should be allowed to say that we're "deaf" and not "disabled" when applying for jobs,for uni etc. Another label we have to put up with; Special needs. Man people associate special needs with being stupid, that they can't do anything. Well I for one know that's not true because I volunteer with them, I have a family member who has Down's Syndrome and they're a pleasure to be with. But why should people associate deaf people with the word stupid? This relates back to the old saying 'deaf and dumb', many deaf people are on par with hearing peers,some above average and yes some are below the national average but that's not because they're dumb, it's because they haven't been provided with the necessary amount of support to enable them to achieve their potential. And yes we may need to have support and resources in an educational and work environment, and we may use a different language. But Special needs?! What happened to being "deaf"?

To end on a positive note I'm proud to deaf, proud to be a part of the deaf community, proud to say to people "I'm deaf."

#UKYP2012

So a couple of weeks ago I was up in Nottingham representing NDCS at the UK Youth Parliament Annual Conference - an opportunity for all members of UKYP to meet and attend various lectures, presentations and seminars. Its run very similarly to a real deal party conference with fringe events taking place as well.

This year NDCS had managed to set up an information stall and get permission to run a half hour workshop about our Look Smile Chat campaign as well as playing a Look Smile Chat video to all UKYP members after lunch.

We arrived early in the morning to set up our stall with loads of information about NDCS, The Buzz, the YAB and our campaigns. We also walked around sticking up posters advertising our lunchtime workshop and asking young people if the would be interested in learning some random signs.

During the breaks between seminars I was amazed and so excited at the number of people dropping past our stall for a chat, to ask questions and to fill in our quizs etc. Everyone had a question and we were very happy to answer as many as we could and to teach some signs and point people in the direction of places they could learn BSL.

I was set reading through some of the material in a quiet moment when I realised that the UKYP manifesto said in big letters that UKYP supports the teaching of sign language in mainstream schools alongside languages such as French and German.
I started pointing this out to people dropping by the stall and was a little disappointed that none of them even knew this aim was in the manifesto... I talked to a few people about why it was so important to teach BSL in schools and explained about Signatures new GCSE in BSL.

At lunchtime a large crowd of people crowded around our stall all very excited (I bet the other stalls were jealous!!) to begin a quick workshop.

We decided to play a lip-reading game to show people how hard lip-reading is and to make them aware of the importance of good communication tactics such as facing people when you talk and speaking clearly. We pointed out to them that these skills transfer to everyday life, not just to when you meet a deaf person.

It was really funny to see young people and adults struggling to lip-read words and phrases and resorting to amusing gestures in order to make themselves understood... I think they got the message we were trying to put across!!

After that we talked for a bit about the difficulties of being a deaf young person in mainstream education, focusing on the lack of subtitles on educational videos. We played on of the Look Smile Chat Videos and we answered questions.
Finally we taught the group a few signs including parliament, geek, tortoise and whats your name?

It was great to see how enthusiastic and motivated everyone was about the workshop and to realise that all the things they had learnt would be fed into their work in their local communities!

In the afternoon we attended a seminar with an MP and two young men who worked in the media who were discussing the attitudes of the media to young people. I was able to ask them a question about how they thought young people with disabilities were portrayed in the media, and whether they believed their views were fairly represented.