How not to offer a medical service...

I have a deaf friend around the same age as me who recently discovered she was pregnant, although she is in a relationship she was very unsure about whether or not she wanted to keep the baby and in the end decided to have an abortion.

She told me her story recently and I asked if I could blog about it to raise awareness of the issues she faced.

As I said my friend was very unsure about what she wanted to do and after speaking to her parents, who are both hearing, they decided that the best thing to do would be to get her some deaf friendly, impartial advice from a local service.
After a conversation with the GP it was decided that she would have an appointment at the local BPAS clinic, her mother called and made an appointment and spoke directly to the receptionist explaining that my friend is deaf and uses BSL. The receptionist assured her that everything would be sorted and that the counsellor she saw would be aware of her communication needs.

The next week my friend arrived at the clinic on her own, it was on a main road and in order to get into the building she had to press a buzzer. She pressed the buzzer and quickly realised it was an intercom system, she waited a minute and then pressed again before waiting a few seconds and hoping someone was listening explained that she was deaf and gave her name. She was buzzed into the building.

When she got to the reception she gave her name to a receptionist who then disappeared behind a computer screen and mumbled a bit. My friend again explained she was deaf and the receptionist apologised.

She waited half an hour in the waiting room before going back to the reception desk, worried she hadn't heard her name being called. The receptionist explained the clinic was running late.

Eventually a counsellor came out and called my friends name and took her through to another room. The counsellor was talking with her back to my friend who was unsure what she was saying. Again she explained she was deaf - the counsellor had not been told and there was no interpreter.

Deaf awareness aside it quickly transpired that the counselling service was not particularly impartial. My friend was pressured to have an abortion and told that she could have all the medical checks that day and set a date if she wanted.

The appointment ended after half an hour. My friend still doesn't know the name of the counsellor she saw. She was charged £60 for an hour appointment.

Skipping over the next few weeks in the end my friend decided that she wanted to have an abortion. She felt it wasn't the right time for her to have a baby and that she couldn't support it and it wouldn't be fair to expect her own parents to help her out. She also wanted to continue studying.

My friend was given an appointment at a local abortion clinic and although the clinic were told by the nurse that my friend was deaf her mother was advised to contact them to ensure she would be able to accompany my friend and help her with communication.

Her mother phoned the clinic and was told categorically that she would not be able to stay with my friend even though she was deaf. They wouldn't book an interpreter as they had a member of staff with BSL level 1 and it was procedure that nobody could accompany a patient.

My friends mother asked to speak to the manager and eventually received a phone call back. The manager again refused to book an interpreter, my friends mother explained that someone with level 1 BSL would not be able to communicate for my friend and that my friend was getting increasingly distressed by the situation. The manager also said that they could not state for sure that the nurse with level 1 BSL would be present all the time, they would likely only be there when my friend was in recovery.

My friends mother explained that my friend would not be able to take on any information given to her and would feel incredibly isolated.

After more than a week of phone calls the clinic eventually gave in and booked an interpreter, however they were only booked for 3 hours and had to leave for their next booking before my friend had properly come round from recovery and had her post-abortion care explained to her.

The nurse on the recovery ward handed my emotional and groggy deaf friend her hearing aid and told her she had to put them in and "listen". The nurse had an accent and my friend had no idea what she was saying.

The clinic sent her home half an hour after she had come round, with no painkillers as she was a danger because they couldn't effectively communicate with her.

Through all this the one thing my deaf friend most wanted me to tell you was that the attitudes of the midwifes when she went for an emergency scan at the local hospital were amazing. As soon as they realised she was deaf they made every effort to ensure she understood, were clear and gave her extra time to ask any questions she wanted and even gave her some of the impartial medical advice she needed.

I feel like the story I've told is pretty self explanatory in the problems it highlights. I was shocked when my friend told me her story and I can only hope that she had a run of bad luck in terms of services. I'm aware that her parents have complained to BPAS and I really hope they get the answers and the apology they deserve.

Christmas Hearing Aid and Cochlear Implant Decorating...

I've created a sneak-a-peak video of some of the fantastic designs that parents and teens have come up with this Christmas!

Check them out in the video below :)

For more pictures, or to find out how to join in with our jazzing up craze visit our Facebook Group - http://www.facebook.com/groups/pimpmyhearingaidsandcochlearimplants/

We now have nearly 500 members and literally hundred of photos a long with lots if different ways and ideas to make your aids or CIs more colourful and unique!

Pondering Noises...

Sometimes things happen in the world around you that make you sit down and reevaluate your own life as such.I've certainly had one of those days today and they're the times when you realise that just perhaps you aren't as comfortable with your own deafness, your own identity as you thought you were. The days when everything just feels a bit of a struggle, and you're not a hundred percent sure whether its really worth working everyday to overcome the barriers that you face.

Of course with my positive role model hat on I know that confidence to shout out and feel at ease with your own deafness is important for your own well-being (and everyone around you's!) but there are some days when you feel like going oh f*** it and putting on your "I don't speak hearing person" tshirt.

I've lived with the fact that my hearing loss is progressive for a few years now, most of the time I don't really give much thought to it. I've learned to get over the panic that happens every time your audiogram shows another 10dB gone... But however comfortable, however much of an incredible role model people might believe me to be I'm just a teenager really, and I have days when the idea of losing my hearing scares me to death.

I might say I hate my hearing aids, that I'd rather go without them, I might throw them away when I'm mad or sad or just plain confused. But if you told me that I would wake up tomorrow morning and they wouldn't be there if I wanted them I have no idea how I would cope. What about music? What about the world around me?

Maybe I'm melodramatic, I know some people who would say I am. But maybe I'm just tired of pretending I'm "cool" with being deaf when actually it makes me cry every time I really sit down and think about it.

I wonder how many other deaf teenagers, either deaf from birth but maybe more specifically those with late onset or progressive loss feel the way I do.

I guess the difficulty with being a late onset progressive deafie is I feel like I somehow missed out on the childhood lectures on how to cope in a world that doesn't seem to see passed the word deaf to actually understand that it means you can't actually hear. I'm a little sick of being told that "your speech is so good that of course I forgot that doesn't mean you understand me like I understand you". I find myself wishing that my speech was a little worse, a little more obvious. Just so people would have a little reminder every time they spoke to me.

So yeah, I guess all this pondering is what happens when your lecturers play 3 DVDs in one day - none of which are subtitled. When you're already exhausted from lipreading conversations in a noisy background just to appear as "normal" as possible then that's a killer right there.

But then what is "normal"? Certainly my social work lecturers wouldn't agree with that particular sentence.

So deaf kids out there... Embrace "abnormality" and rock on.

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