A&E and Me - PDDCS Website

So I have a new column now as well as this blog! I've been asked to write for the Peterborough District Deaf Kids Society website and I'm loving it...

I even have my own banner at the top of the column!! :)

Here's my first post courtesy of... http://www.pddcs.co.uk/2012/12/deaflifeaandeandme.html

So, last week I was asked to start writing this column and while I was thinking about what to write, an issue that has probably affected every deaf child, teenager and adult popped into my head.

This week I took a trip to A&E and it struck me once again just how un-deaf aware a number of doctors and nurses are. I mean, of course, you occasionally meet the odd person, like the paramedic I met whose wife was deaf or the nurse who had a profoundly deaf nephew, but by and large medical staff seem to have absolutely no idea what I mean when I say 'I’m deaf.'

It’s not just A&E staff either. I've had the GP who walks around the room while talking to you and even the ENT consultant who talks at you whilst looking in your ears. The story my mum always tells is when I had a chest x-ray and the radiographer asked me to take out my hearing aids and then said 'I’m going into the back room now, but when I shout I need you to breathe in for me.' I’m afraid I just looked at him with confusion.

But for me that’s not even the worst part. As a Deaf teenager, I’m fiercely independent. If I want to communicate with someone, I will, even if it means a long frustrating half hour writing everything down on a piece of paper. So what annoys me more than anything is when medical staff talk to the person next to you as if you’re not there. 'Is she allergic to anything?' or 'What’s her pain threshold?' I thought that going to the hospital with a friend rather than my parents would stop this from happening but it made no difference…

Are deaf people really so difficult to communicate with that it’s just not worth the effort? I know that Deaf Direct in Worcestershire have taken on board the issues that deaf patients are experiencing every time they go to the GP or hospital and have recently been running some deaf awareness training in local hospitals. Hopefully this will make a difference and change the way doctors and nurses treat deaf patients. Maybe this deaf awareness training is something that could be done nationally by agencies such as NDCS or Remark?

In terms of advice on how to deal with these un-deaf aware medical staff, I’m not sure I’m the best person to ask! But when I have it sorted I’ll let you know. For now I guess these are a few pointers that might help:

• Make sure that doctors and nurses know you are deaf, it’s annoying but staff don’t seem to share that kind of information between them.
• If a doctor or nurse doesn't communicate well with you try and give them some handy tips. I know this is hard and feels embarrassing at times but the next deaf person they meet will be so thankful you did it!
• Don’t be afraid to shout up if you haven’t heard. It’s your care and you have the right to understand everything that’s happening to you. Similarly if you want or need an interpreter then make sure you get one, it’s important to understand everything and that will make you feel more confident.

Pimping your hearing aid or CI... A "How To" Guide with pictures!

Lots of people on the Pimp my HAs and CIs Facebook group have been talking about how fiddly it is to stick nail foils on their hearing aids and cochlear implants, so I thought I could do another step by step tutorial for those people who are just getting started!

1) Take of the mold and take out the battery.



2) choose your nail foils! You can buy hundreds of different designs from shops and online from Amazon and Ebay.



3) Choose a nail sticker about the right size and stick it down, don’t worry if it’s too wide as you can cut it to the right shape.



4) Carefully cut the sticker to size so that it doesn’t cover volume controls and most importantly microphones!! Sometimes you can do this before you put the sticker on and sometimes afterwards by carefully trimming the edges.



5) Use the same process to cover the rest of the aid! Make sure you can still open the battery door and nothing is covered over!  You can cover just one side of the aid or all of it! As long as you’re careful!#
 

6) If you have a radio aid shoe you can also decorate that!



You’ve now successfully pimped your hearing aid or cochlear implant!!

Other things you could consider “doing up” would be your radio aid, box for your hearing aid, i-com or oticon streamer… Some people have also started colouring their tubes using a sharpie!

 

Fairy Ears...

This is another blog post by my friend Eloise... I asked her to write about overhearing this conversation because it shocked me so much!! 

It was a very bad day in audiology today. Not for me, but for a girl who looked to be the age of around six or seven waiting with her mother to go into an appointment.

“Mummy, please let me have the pink hearing aids,” she said, swinging her legs off the chair. She was pretty with brown, slightly curly hair which came past her shoulders. Her mum was also quite pretty but oozed pretentiousness throughout the situation.

“I promise I’ll be a good girl,” she continued, “All I want is fairy ears…”

Her mother interrupted before the girl could carry on. “Be quiet, Martha, we need to listen out for your name to be called.”

The little girl sat quietly, still swinging her legs around. She looked at the TV but the mumbling of the news could not keep her distracted for long.

“But mummy, Josh in year two at school has blue hearing aids and says they are like superhero ears! I want to be the same, but with fairy ears! And the nice hearing lady said I could have pink ones if I wanted!”

“Martha, how many times have I told you to be quiet about the fairy ears? You’re a big girl now and you can stick to brown. It blends in with your hair and so everyone thinks you’re normal. Josh’s ears are very nice, but you’re grown up now and all these colours look silly on such big children!”

At this point, I had become so angry and upset at the mother’s attitude that I had to switch my own hearing aids off. My hearing aids are pink with glitter moulds, blue tubes and butterfly stickers – and I’m eighteen years old. The fact that I can decorate my hearing aids gives me a sense of pride and identity as a young deaf person. It seriously upset me that this little girl could not get the ‘fairy ears’ that she desperately wanted. That small dream would have been in reach had her own mother let her have them. Instead, her mum, only concerned about appearances, forbid her own child from having the colour and design she so wished for.

"Eloise's hearing aids before blue tubes!"

To children, having the colour of hearing aids and ear moulds that they want can make all the difference between being confident and proud of who they are or being frustrated. I just wonder whether in the future, this little girl, Martha, will grow up wanting to show her hearing aids, or whether her confidence will be low and she’ll be constantly asking God “Why me?”

Please share your opinions on this situation. What would you say to the mother and the little girl? I certainly know what I’d say, and the mum probably wouldn’t like it!

Team V needs you!! Tackling Youth Homelessness...

A slightly different blog post than usual this time as I wanted to tell you all about the work I've been doing with vInspired an organisation connecting young people with charities and voluntary organisations as well as promoting self development.

Each year vInspired runs an amazing opportunity for young people aged 18-25 called Team V and after a long interview process I've amazingly made it onto this years Team V 2012!

Over the course of the year Team V will run 3 national campaigns within their local communities by recruiting a "dream team" of volunteers to manage PR, media, finance and pretty much any other role you can imagine within a campaign!

The first campaign reveal was last weekend and I'm happy to announce that our first campaign will be tackling youth homelessness and promoting awareness of organisations offering help for young people experiencing youth homelessness.

Below is the campaign video - entirely accessible :) A big step as I've previously complained to vInspired about their videos being all speech and no subtitles...

I think you'll agree that the statistics around youth homelessness are pretty amazing - and not in a positive way... I was shocked to learn how many young people experience youth homelessness and even more shocked to learn how many of my fellow Team V members had personal experience of homelessness and living in supported accommodation.

I'm really excited to start campaigning but i really really need volunteers!! Team V has never had a deaf young person involved before and this year we have 2 - but id love to have a "dream team" of deaf and hearing volunteers who could work together to run this campaign!

As you saw from the video there are a number of steps involved in this campaign... contacting a local organisation... running an event or exhibition... and organising an eye catching stunt in order to draw attention to youth homelessness!

I can't do all that by myself - so if you're interested in campaigning to raise awareness of youth homelessness, live in the Birmingham area and would like to get involved then please give me a shout!

You can comment on this blog post with your email address, or you can email me directly at teamvnairi@gmail.com

As well as volunteers I could also do with a couple of interpreters or communicators - I have a campaign budget but i'd rather spend it on the campaign than interpreters to help out :) again if you're interested get in touch!

For more information take a look at the vInspired Team V page :) http://vinspired.com/teamv

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.