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.

The Theme Park Theory - Eloise

Another post written by somebody else! Think I'm going to have to rename this blog something other than "Ni Gallant" as that doesn't seem very fair anymore!

This post is by Eloise and came about after some discussion on the NDCS Facebook Page following her school trip to Alton Towers. 

Theme parks can be tricky places for many people who have particular needs. For those who are physically disabled, many special arrangements are made in order to accommodate them in the best possible way. 

However, for those who are deaf, there seems to be an unseen loop amongst these thrilling attractions.

I recently went on a trip to Alton Towers with my school. When I arrived, I was given a white wrist band by guest services in order to highlight the fact that I had either a visual impairment or that I am deaf. Although there were no major problems with Alton Towers throughout the day, there were a few points I would like to highlight with the service I received:

• A white wrist band wasn’t enough to draw the attention of the staff at Alton Towers – In fact, I’m not sure anybody noticed at all even though I walked around with my right sleeve rolled up to make it easier to see! My main problem with this is that when my friends and I got stuck on a ride in the dark, I couldn’t see or hear anything – especially with my hearing aids out. My understanding of the ‘rescue mission’ was nil until my friend shouted the process into my ear so that I could get the gist of what was going on!

• Some of the staff were evidently undertrained in how to help a deaf person on a ride. As you know, visual cues are an important part of understanding what someone is trying to say to you. There was a lack of this, particularly amongst the younger members of staff at the park who tended to put their hands in front of their mouths and turn away at crucial moments of instruction. It’s unsettling to be sitting on a noisy ride and not being able to understand the instructions from the staff as they’re strapping you into your seat!

• Finally, I could see no evidence of flashing alarm systems being installed into rides. I would have difficulty hearing an alarm without my hearing aids in unless it is very loud. I expect that almost every deaf person would take their hearing aids out on rides to make sure they stay safe, so this would further the need for visual warning systems.

Although my experience was not bad at Alton Towers, a little bit more awareness and understanding amongst the staff would have gone a long way. I’m not someone to shout out to people if I am having a communication issue as I’m naturally quite shy, so this awareness really would help me and probably a huge number of others.

Many parents worry about their children going to a theme park if the system is not well established. The concern that parents have for their deaf child’s safety in theme parks is completely understandable – rides should be made accessible to all people with a variety of needs, and if this is not the case then it can be extremely worrying.

What is terrible is that some theme parks have been reported to discriminate against deaf sign language users - namely Disney Land Paris. One person reported that as a deaf family, she and her family weren’t allowed onto some of the rides without a hearing peer aged 18 or over. In order to access these rides, they had to pretend they weren’t deaf, thus putting themselves at potential risk. This situation could be easily resurrected through some training and a simple system for the staff to help deaf people access the same attractions as their hearing friends.

Other parks, however, have received gleaming reviews on their efforts with helping all people of all kinds. Lego Land is said to have their staff walk around with badges stating which languages they can speak, and sign language is on the list. This is a system to be admired and hopefully followed by other theme parks.

Alton Towers is half way there, and will hopefully improve with a nudge or two in the right direction from deaf visitors. Keep up the good work and I hope to have a great time next time I go!

Comments on "The R Word" by Emily Howlett.

Last week Emily Howlett wrote a piece that struck a large personal chord with me for the Limping Chicken entitled "The R Word - Why we Need to Start Talking About It". The article discusses rape and the attitudes towards rape of different groups of people including the Deaf Community.
I thought it was an interesting article because, as Emily rightly points out - rape is something that, understandably, is just not spoken about. I thought some of her reasonings for why perhaps rape is an even harder topic of discussion for deaf people made perfect sense and many of which were things a number of my friends have had to consider, and overcome, in the past.

I also thought that her comments about the fear felt by deaf women around the issue of how and when to report rape or sexual assault were very interesting.
I have never come across (although there may be one!) a charity dedicated to only helping deaf victims or abuse... Many charities offer phone line counseling for victims which is completely inappropriate for deaf people and would be very difficult to access. 
As well as this Emily's points about the closeness of Deaf Community making reporting rape even more difficult really hit home with me. Deaf Community is a world where almost everyone knows everyone and you often have mutual friends with other deaf people... I suppose it's a similar feeling to having 100 people in your school year and being sexually assaulted by one of those 100 people... You have to see this person, and all the other people 5 days a week, have lessons with them and socialise with them. Imagine how hard it would be to admit to having been sexually assaulted - particularly if this was denied by the other person. An impossible situation.

This post is a few of my thoughts and comments upon reading the article - I actually wrote them all down on my phone while they were fresh in my memory because I thought some of them were actually quite interesting and impacted alot on the lives of deaf teenagers in particular.

Firstly, I wanted to draw people's attention to the incredible statistic that deaf children and young people are 70% more likely to suffer from mental health issues than their hearing peers and around 50% of deaf children and young people are said to suffer from some kind of mental health problem.
Personally, I think this makes perfect sense and I don't understand why more isn't being done to address this... Plenty of research shows that deaf young people are more likely to be bullied, abused etc. So why is it that projects specialising in mental health in deaf young people are still in such early stages?

My second thought surrounds Personal and Social Health Education, Tutor or Form times and Citizenship in schools... I don't know about other areas but here in Worcestershire if you see your ToD frequently this is most likely to be organised over one of the previously mentioned lessons. While this on the surface seems sensible (you could argue these lessons are less crucial than maths or English perhaps...) this often means that as a deaf teenager you miss out on a wide range of topics and information which is presented to all teenagers through these lessons.
These topics and information include: sexual health (STIs etc), relationships, teen pregnancy, drugs, bullying, mental health... The list is endless, I could go on for hours!
As well as this much of this valuable information is often presented in a completely inaccessible way. I remember the frustration of struggling through hours of you-tube clips and unsubtitled videos where the characters had strange accents and all the information was given quickly and without thought for deaf young people...

It's little wonder that deaf teens are considered more likely to drink, take drugs, get pregnant etc... I mean really, what do people expect when the information about all these issues is just not there in an accessible format! Deaf young people need leaflets, booklets, fact sheets with clear and concise relevant information rather than garbled videos with no subtitles or fast paced group discussion.

I think a great example of this lack of "information" is the knowledge about "sexual language" of deaf teens... I know in the past one parent of a deaf teenager has approached me with concerns about their teenage daughters lack of understanding but as well as this I can draw on my own painfully embarrassing experiences of being the last person to understand the terms LGBT or f**k...  Hearing children and young people learn these phrases often in the play-ground or lunch hall by word of mouth and over hearing other people's discussions. Yet for many deaf children and young people this is not possible - or certainly more difficult than for other hearing peers!

The net result from my point of view is that deaf teenagers have a biological understanding of "sex" and "gender" as this part of the curriculum is taught in an accessible way... But often then have little social understanding of "sex" and the dreaded topic of teenage relationships...

Apologies for the rather depressing nature of this post... But I hope it's given a few people "food for thought" as such. I don't think enough emphasis is put on the need for better Personal Social and Health Education for deaf teens but there is a definite need! We're not just statistics... We're young people who apart from not being able to hear so well carry out normal, functioning lives! Why should we be deprived the information and access we need as teenagers in order to inform our selves on issues affecting us.

That said, here are a number of links to sites/charities/information that I've found over the years :)

National Deaf CAMHS (Children and Adolescents Mental Health Services).

Deaf E.A.R.S - education and advice on relationships and sexual health for deaf people in sign language or speech, subtitled videos etc.

Sign Health - information on mental and physical well-being

NDCS Buzz - information about a range of issues including bullying, family and school aimed at deaf children and teenagers.

Pondering Audiology... again!

This week I've been thinking and chatting about audiology again - in particular this same issue around access to colourful hearing aids.

I do still think it's important to firstly say that I love my audiologist! She's deaf herself and for me this is really cool - every deaf child should have the chance to see a deaf audiologist! - she understands the issues so much better than anyone else I've ever met and when I say things like "it's a kind of crackly, hissy thingy..." she immediately understands what I mean rather than looking at me like I'm totally losing it...
I know that it's not audiologists fault that their is limited access to coloured hearing aids - a number of audiologists I know really believe that deaf people should have the opportunity to pick what they want. It's the system were in and the annoying post code lottery situation which determines what service you receive.

I was thinking last night though... As far as I'm aware Selly Oak HARC where I go only hand out beige aids to adults. \As far as I understand one of the reasons they do this is because they believe the majority of adults want inconspicuous aids rather than in your face colours.
But what if, like me, you're skin is not beige... actually do you know anyone whose skin is beige? I thought not... My skin is olive coloured and many of my friends have dark skin... Based on the HARC thoughts of inconspicuous aids surely we should then be offered some other colour? One size (or in this case colour...) does not fit all as they say.

From where I'm sitting this position taken by many audiology departments that only those deaf adults (or in some places children too!) who have additional learning difficulties or mental health issues should be allowed colourful hearing aids is so silly its just... silly!

What about freedom of expression? What about confidence? Being 19 might make you an adult in the eyes of an audiologist but really I'm still a kid at heart! I want cool colours to show off and make my ears look great...

It's not like having coloured aids costs anything extra... I did check this out! It costs exactly the same amount to order coloured aids as it does to order plain, boring beige ones.

The other main reason I was given for not being allowed to have coloured aids was that if I changed my mind about "liking" the aids and wanted to change them (can I do that?!) the audiologist would be stuck with a pair of colourful aids and no one to give them to. (From the feedback I've had audiology could probably find a hundred new people to give those aids to, but maybe not...)
I have however come up with a solution - and it didn't take much thought! Why not give out beige aids for the 6 week "trial" period that everyone has with their new aids... Then, if the person likes the aids and feels they're working for them then swap them and order them a colourful pair! Problem solved :) Not rocket science really...

It is fun to decorate aids, and there is now an amazing facebook group called Pimping My Hearing aids and Cochlear Implants - UK where lots of parents and deaf teens show off their funky designs and share ideas on how to decorate. I've seen some more brilliant ideas and I'm amazingly proud of the group and what it's achieved!

However, it's not the same... Decorating aids can get expensive (6.50 for my latest nail foils..) and many people I'm sure would rather just have colourful versions of their aids.
I have to say that the post code lottery involved is also incredibly unfair... In Worcester their are colours but go up to Birmingham and suddenly no colours...

So, here's my plan!

I've made a petition which you can sign at the end of this post... Once a number of people have signed the petition I'll start sending off copies to audiology departments around my area asking them about coloured aids. It would be great if I number of people got involved to and tweeted, facebooked and emailed around the petition and later spoke to their audiologists too!

Thanks :)

Petition to make colourful hearing aids available from all audiology departments :)

"Look, Smile, Chat..."

"I don't hear so good..."

Despite the glaring grammatical errors I've lost count of the number of times I've used this phrase over the past few years... teachers, family, doctors, friends...It's my back up phrase, you know for cases of emergency where the hearing aids don't show through the hair of the lack of correct response doesn't make someone suspicious.

From where I'm sitting Deaf Awareness is THE biggest issue for deaf teenagers in this country; and probably kids and most adults too... You could argue that post-code lottery, education, equal access are all more important but actually when it comes down to it all those things are simple - Deaf Awareness.
With better awareness in schools about the needs of deaf teenagers teaching methods would improve, students would be more welcoming. If more cinema managers understood the problems deaf people have understanding speech, more subtitled films would be available. If the government could see that although each deaf child is unique we all deserve to have our individual needs met we wouldn't have such a blatant post-code lottery when it comes to issues in Audiology and deaf education.

I'm not the only person who belivieves this... Last year the NDCS Youth Advisory Board voted that Deaf Awareness was the most important thing we wanted to campaign for - purely for the reason above. We could all see that by improving awareness we would improve a number of other areas simultaneously. Deaf Awareness was just an umbrella heading for many other issues we faced.

And so, this week NDCS have launched their new campaign - Look, Smile, Chat.

The campaign focuses on raising awareness in schools but also spreads out to youth groups, mainstream events and I personally hope that it will be successful enough to one day hit the people who need to see it the most. NDCS have invested so much time in the fantastic resources available - posters, deaf awareness videos, teaching resources and they're all fantastic and made with an incredible amount of input from deaf young people all over the UK.

As well as all this NDCS is encouraging parents, teachers for the deaf, youth workers and deaf young people themselves to go into schools and teach people about Deaf Awareness - who better to tell young people about the issues facing deaf young people than deaf young people themselves?! Sadly I don't think that this happens enough, but who knows, maybe Look, Smile, Chat will change that!

To view all the resources and download copies of the lesson plans, posters etc please please visit The Buzz - Look, Smile, Chat. You can show your support for the campaign by adding the logo to your facebook picture via the Buzz website.