Friday 30 March 2012

The Limping Chicken and NDCS Volunteering...

AHHHH... - the scream of excitement I made this morning (no hearing aids in - oops...) when I realised that my first piece of writing had gone up on the Limping Chicken Website!! Massively proud deafie sitting here. Definetely not hitting refresh every five minutes to see if anyone else has commented... ;)

Currently waiting to escape school on the last day of term to catch the train to Bristol for my first NDCS volunteering weekend; as well as a chance to catch up with fellow YABer Sophie from Northern Ireland - lucky thing has already arrived and is busy shopping!

More details about the weekend - and all our teenage antics - will be up on Monday once I've had some sleep and recovered!

PS, if you want to read my Limping Chicken article - first of many! - click HERE. And a massive thank you to Charlie Swinbourne for letting me ramble on... a lot... :)

Monday 26 March 2012

Quick (positive) update...

I wrote last week about one of the girls in my youth group entering the Worcestershire Poetry Slam in BSL. Well, I'm proud to announce that the competition was held on Thursday and she came 3rd!! We're all very pleased for her and it's been great to see how much confidence it's given her.

Next year I hope that a few more people will enter in BSL; after that who knows - Britain's got Talent? The X Factor in Sign Song?

:)

Wednesday 21 March 2012

Hitting Out at Local Services...

This post has been brewing for a long time. But I've decided it's about time someone stepped out from the line and spoke up about services and schools in Worcestershire. Before I go any further I'd like to say that I have great respect for a number of teachers, schools and teachers for the deaf within Worcestershire - some of whom I know on a personal level and get on with very well.

The first time I experienced problems with Worcestershire County was when i transferred to a new sixth form. At that point the only support I had at school was a radio aid and infrequent ToD visits - I didnt need anything else and thats what we told the school.
About two months in to sixth form I had a very bad ear infection and other complications that caused me to lose some of my hearing and since then my hearing has for one reason or another continued to worsen. Nobody understands why, despite extensive testing at Worcester, London and Birmingham hospitals.

I know that sounds like a lot of hospitals and let me explain the reason why. When I lost my hearing the head of services for deaf students in Worcestershire contacted my parents and told them that the service belived I was lying about my hearing loss. The reasons given were a) that my hearing loss fluctuates and b) that my speech was too good.
We have since been told that a fluctuating hearing loss is characteristic of the type of hearing loss I have. As for my speech, I didn't even wear hearing aids until my early teens. Of course I have pretty decent speech. What a stupid comment.

I'd just like to emphasise that these comments and judgements were made by a man who had at that point never met me. Over the past couple of years he has stuck to his views despite extensive objective testing which I've had purely to prove him wrong - because if I couldnt prove him wrong then his service would remove all my support.

Whilst this was going on I totally failed my first year of my A levels - I put this down to a mixture of stress and an extreme lack of support.
The lack of support culminated when the county audiologist arrived unannounced at school during my mock A level French exam and demanded to see me. When told this was impossible she kicked up as much fuss as possible; when my Mum complained the county audiologist told my Mum that I had been extremely rude to her. I'd barely said to words I was so scared.

At the suggestion of friends my Dad took me to look around Mary Hare - and although we now accept that it probably would not have been the right choice for me we decided to ask the council to fund a place for me. With no consideration at all the answer came back no. This is not unusual but over the next six or seven months we fought against the council who despite medical evidence from two hospitals still denied that I was deaf.

Try coming to terms with the fact that you can no longer hear, in the middle of that argument.

After a lengthy process - and lots of help from NDCS!!! - we eventually came away with a mediation agreement stating that I would have a full time note-taker. It took the council a further ten months to sort this out. At one point I had four different note-takers and still not all my lessons we covered.

We had hoped that the school would be more supportive - fat chance. My school became an academy last year and from that point on everytime extra support was mentioned they ran for the hills and refused to answer emails or phone calls. At one point my Mum urgently needed to talk to the SENco - she left a million messages, sent hundreds of emails. In two years of me being at the school my parents met and spoke the SENco once.

Things got worse at the beginning of this year; I've been ill for a while now and unfortunately I've had a bit of time off school. A lot of the time through sheer exhaustion that I haven't physically been able to overcome.
One day I went to school as usual. I had three lessons: Chemistry, Psychology and finally Biology. I attended all three and as we have a "cake day" once a week in Biology I even made and took in a chocolate cake as it was my turn that week. Period four (after lunch) as class ended my head of year came in to talk to me about my UCAS application. After that I went to biology - ate cake - and then walked to Mums office as normal. When I arrived she was in a total panic. At 3.30pm, just 20 minutes after having seen and spoken to me in a lesson. My head of year had phoned Mums work telling reception it was an "emergency" and told my Mum that I had truanted every single lesson that day. My Mum asked her what I'd done with the cake...

Instead of apologising for what was clearly a misunderstanding the next day my head of year dragged me out of my form room and shouted at me for not attending lessons.

Things like this happen on a regular basis between us, the hearing services and the school.

My reason for finally wiritng this blog is this.

Last Friday I was off ill; I was still ill on Monday. I went back to school on Tuesday and by break-time I'd passed out twice and been sent home.

Before being sent home on Tuesday I went to collect my notes from the SENco's office for the lessons I had missed. The file was missing, after much searching with a lovely TA we found my notes. At the top of my notes was a green sticky label on which the note-taker had written "withhold from NG until reasonable explanation for absence given and discussed with SENco." 
It goes further... At the top of each individual page was a note saying "unauthorised absence" or "student absent, reason unknown."

Now I wouldn't mind as much but on that day  my ToD had been told I was ill. They'd been given more of an explanation than they necessarily needed as far as I'm concerned...

These are the notes that sit in my file next to my work and they have "withhold" written all over them. Well that's great. But why would they need to be withheld?! And why write it on the notes?

Last night my Mum emailed the head of service - also my ToD to raise this question. The email she's had back answers every other point in the email other than the one she actually wanted answered. It says that we seem to be confused; that he'd like to meet her in person. That we haven't established the correct timeline. What timeline?!?!?! there is no timeline...!

Enough of my rant; my point is this. As far as I'm concerned the situation in Worcestershire is getting worse.
This year two part time ToDs were let go. This summer one senior ToD retires. The head of service took partial retirement at the beginning of this year. None of these people will be replaced.
A few months ago a group of us had problems with our Radio Aids and Receivers. The county have informed our families that they have no budget to buy new equipment - even though Phonak themselves have recommended this.

This is no secret amongst parent of deaf kids in Worcestershire; yet noone seems to be doing anything about it!

At the beginning of this year one of my friends had her support hours cut for no apparent reason.
Some of my friends now only see their ToD once a month or once a term whereas before this year it was every couple of weeks.
When the senior ToD leaves she will not be replaced - who will cover her students?

These are questions people need to be asking - I've tried. I wrote a letter to our local MP this year. The head of service was told about it by his boss and actually asked me not to write as it would "make things worse".

If services are being cut behind people's backs and if the budget for equipment is gone then parents deserve to know about this. And they don't!

It's about time we had a campaign about this... But noone seems to be bothered. If they are bothered they're not prepared to stick their necks out and work to campaign against cuts to services.

Come on people! Aren't we a little sick of this?! Deaf children and young people deserve better!

Tuesday 20 March 2012

Rita Simmons... Her personal journey to make her daughter hearing...

I came home from school early today and began searching through Iplayer for something interesting to watch. I wanted something with sign language as my subtitles had been playing up - searching through I noticed the documentary everyones been talking about: Rita Simmons - My daughter, Deafness and Me. I thought I'd give it a go and try to approach it with an open mind.

After 50 minutes I wasn't quite sure what to think to be honest. I'd seen things that confused me, that made me angry and some things I very much agreed with.

I'll save you from my thoughts on every minor detail and stick to one or two major things.

My first point may start off sounding positive but belive me I'm not impressed. I've noticed recently that there has been an increase in programmes with a "Deaf" theme. On the surface this is a brilliant thing! I'm always up for a bit of low key deaf awareness raising but lets face it, neither this programme or Deaf Teen: Hearing World have successfully managed to raise deaf awareness. They've been talked about yes, but only within the Deaf community. Ask a hearing person, even on of my friends about the programmes and the response you'll get is a blank look of non-recognition...

Like I previously said when I wrote about Deaf Teens here was a unique opportunity to truly engage the "hearing world" and put our view across. Show people that Deaf people are not dumb, or stupid - we can achieve as much, if not more, than your average hearing person.

From what I've seen Rita Simmon's lasting impression of the Deaf community will be that they believe she's abusing her child if she arranges for her to have a cochlear implant. Is this really the impression we want to leave people with? I think not...

There was no acknowledgment in the programme by Rita or by the proffessionals surrounding her that all deaf children are different. Not all of them have good speech like Rita's daughter does. Not all of them are deaf for the same reason. Each child is unique, an individual with their own needs and ways of communication.

The second time I felt like running to a shed to find an axe was when Rita comments that her deaf daughter who will one day become profoundly deaf does not need Deaf people, their community or language. Well I'm sorry, but who are you to make that decision for your daughter? Why not give her the opportunity to meet other deaf young people, to learn to sign and to interact in an environment where she won't feel as frustrated as she clearly at times is. I can see where Rita is coming from as a hearing person - but really she needs to think about her daughter and the opportunities she deserves.

The same could be said of her decision about cochlear implants; Rita is convinced that this is the way forward for her daughter in the future. Well maybe it is. But Rita's enthusiasm for implants seems to be because she sees them as the "cure for deafness". She cannot understand why some deaf people would willingly choice to not have sound. I have to say that to me this shows a profound lack of understainding of the issues around cochlear implants; a lack of understanding of the sense of Deaf community tied in with sign language; and a belief that with a cochlear implant her daughter will be hearing - like the rest of her family. Well I'm sorry. But she won't be...

I could rant on for hours more about the programme but I won't. I thought it showcased some interesting differences of opinion; and in the end my major qualm is with the missed opportunities for highlighting the difficulties facing deaf children and young people. A valuable opportunity missed, ah well.

Thursday 15 March 2012

Confidence and the changes to the Equality Act...

At quarter to seven this morning I woke up and read an email which has made my day brighten - despite the looming Psychology timed essay question...

The email was from one of the girls in my youth group; although one of the eldest she's always been painfully quiet, only really getting involved with the few of us she knows really well. But the last few months all that has changed! She's volunteered to be our committee secretary, dived in to the activities and this morning I've found out why. She's learnt to Sign.

It's a bit silly really - I should have noticed that she'd started joining in with us "signers". And now she's gone one step further than any of us would dare - she's entered the Worcestershire Poetry Slam with a poem about being Deaf, in BSL. Proud doesn't really cover it to be honest. I'm over the moon for her, chuffed to bits!! And we'll be there every single step of the way, cheering and supporting her - she'd better win!

In other news I've also been jumping up and down in joy about the Government changes to the Equality Act. The changes relate to auxiliary aids (things like radio aids and note-takers) and the Government has decided that these should now be provided within school as reasonable adjustments. Its an amazing win, especially for the huge number of deaf children and young people who don't have a statement of educational needs. The best thing is that it's mainly down to NDCS and their campaign which resulted in over 700 replies to a Government consultation. You can read all about it here.

Today is News Day all over the UKand our school are getting involved too - I'm so happy about all the changes to the Equality Act that I've decided to write an article about it.... I'll keep you updated!

Monday 12 March 2012

NDCS Youth Advisory Board Blog

NDCS YAB Blog Post - Woodcraft Folk Participation Weekend

Last weekend two of our YABers went to the Peak District to represent NDCS at the Woodcraft Folk Participation Weekend which was also attended by a number of other charities.

The weekend centred around building confidence in young people and encouraging them to participate in youth events.

I have to say I'm pretty jealous because it sounds like the had a wicked weekend!! :)

You can read all about it by clicking on the link above... Happy reading!!

Wednesday 7 March 2012

YAB Cinema Subtitle Campaign...

With all the current gossip about subtitles on live Tv and in particular Dancing On Ice - check out the story here at the Daily Mail - I thought maybe it was worth publicising the Youth Advisory Board's Cinema Subtitles petition.

Last year at the very first YAB residential in London we realised that as a group we were all extremely passionate about the lack of access for deaf young people (and older people!) to cinema. We discussed all the issues: films available, times of films, travelling to the cinemas... and contacted other deaf young people in our areas to find out their views as well. I'm pretty proud to say that among us we managed to persuade over 500 people to sign a paper petiton arguing that access to subtitled cinema needed to be improved.

At our July residential we discussed how we could take forward the campaign and togther we set up an online petition which you can sign here at campaign to increase the frequency of subtitles cinema showings. We began posting the petition on facebook and twitter and as a result nearly 300 more people have signed up!!

But! We still think more needs to be done to improve access to cinema and we need your help!
Why not...
  • sign the peitition yourself
  • share it with all your friends - we could easily get 100s more signatures of this happened!
  • write to your local cinema and ask them to show more subtitles films
  • or even set up a meeting with the manager of your local cinema and tell them about the issues: most films are late at night, popular films aren't subtitles etc... 
This way we can improve the quality of access for all deaf people - I know this is an area with strong opinions. Many people argue that subtitles are distracting and many cinemas are afraid that they will lose profit by showing more subtitled films; however, there is a market out there! About 9million people in the UK are deaf or "hard of hearing" - and thats alot of signatures!!

Thank you :)

Monday 5 March 2012

YAB Final Residential!

Firstly - and most importantly! - check out the brand new NDCS YAB blogspot page and look forward to many more amazing blogs about campaigns and events from all the YAB members!

This weekend 11 members of the YAB chugged and flew to Birmingham for the final -official- 2011 to 2012 YAB event.


The event was held at The Studio in central Birmingham - an amazingly colourful and inspiational building fillied with bean bags, a wii, a punch bag, inspirational quotes and as much hot chocolate as you could possibly drink!

As this was the final weekend the main focus was on evaluation but there was still plenty of opportunity to learn new skills and on Saturday we took part in a workshop run by the NDCS campaigns team on the change from DLA to PIP. It was definetely a workshop that made us sit up and think as we realised that nearly all of us would not qualify for PIP - maybe this is something the new board should be campaiging about! And we certainly gave Jess from campaigns plenty to think about!!!

The NDCS staff had set up a timeline of all the events and campaigns we had been to or run throughout the last year and it was amazing to think back on EVERYTHING we had managed to cram in! Certainly an awful lot of stuff!!

Throughout this year the YAB have had 4 residentials; been represented at the Scottish Festival of Politics, the Lib Dem Conference, the Cyber Space Conference, Internet Safety Week and many other events and also managed to fit in an amazing cinema subtitle campaign alongside other deaf awareness campaigns! - I'd say that was quite an achievement!

Also at the weekend were NDCS audiologist Vicki and Remark (a deaf run film and media company). With Vicki we made a series of videos explaining how equipment such as radio aids works, how you can retube your hearing aid and also a number of deaf awareness tips! All of which will feature on the NDCS Buzz website.
As well as this Remark also filmed all the activities that took place and an indiviual evaluation of our time on the board which will be used to encourage new young people to join the board.

"I have had such a fantastic experience on the board, meeting loads of new people, boosting my confidence and helping the NDCS to campaign for things that really affect young deaf people all over the UK. What a year it's been, too much has happened to put it into a few lines and words do very little justice to the hard work we all put in and the memories that we got out of it, which we will cherish forever!" - Andrew
On Saturday evening we also found time to go bowling at the Leisure Box to relax and catch up with another member Tom who has his maths exam today - Good luck!! Meaning he couldn't attend all weekend. It was an awesome time and there were a lot of funny moments - all of which were caught on camera!!



 On Sunday afternoon we had a presentation and Thank You! session where we were all presented with bright blue YAB hoodies and listened to a rap written by the NDCS staff telling us all their favourite bits from the year!! - Very funny!
As a group we gave the staff a photobook Ellen had made and which we had all written our own personal messages in - were going to miss our brilliantly inspiring staff!!







Finally we all took part in a superb African Drumming workshop which threatened to bring down the whole building with noise and vibrations!!! Definetely a very memorable end to an amazing weekend! - But lets not forget the very tasty cake the staff had also bought us!



And don't despair!! Because this is most definetely NOT the end of the -vintage original- YAB; there will be much much more from us in the future!

Sunday 4 March 2012

Identity.

I've recently realised that some people seem to have a somewhat illogical fear of the word deaf. To them deaf means, well, totally deaf. Can't hear a jumbo jet close up kind of thing. They can't seem to accept that "deaf or Deaf" can span a multitude of hearing ranges - or non-hearing ranges in this case.

I'm sick of the various political arguments everytime it comes to filling in a form. The latest one is my university disability disclosure form which had to be sent off with "hearing impaired" written in black capitals.

I nearly cried... Hearing Impaired? Ouch! It makes it sound like I have an... impairment?!

I personally think "hearing impaired" is an interesting term; I'm not 100% sure what it even means. It implies that being "hard of hearing" – The world’s other favourite term - some how prevents you from taking part in something, or achieving something. I certainly don't view myself as "impaired" in any way because of my deafness. I prefer to see it as empowered!

All this "hard of hearing" and "hearing impaired" rather than simple "deaf" stuff is giving me a bit of an identity crisis if the truth be told! It makes it even more difficult for me to know which side of the line I stand.

On the one hand I'm a mainstreamer, with hearing parents, hearing siblings and some hearing friends. From 8am until 4pm I'm expected to mold myself into some semblence of a hearing being.
Yet when school ends (or has it? I never hear the bell...) freedom begins! There's deaf club, youth group, NDCS youth advisory board... The list of my activities within the Deaf community is rather long - and astonishing when compared to the only hearing activity I take part in. School. 

I'm well aware of the old big D little d debate but in my mind deaf is D/deaf. Surely we can transcend all that? Surely anybody with a hearing loss who identifies with the Deaf community is plain and simple - D/deaf? Apparently not... A rather long argument/debate I fear which will doubtless leave me even more identity starved.

For my part I call myself deaf. Or partially deaf if I'm filling in a dreaded form... I use speech and sign depending on the cirumstances and although I have more deaf friends I have a number of good hearing friends too. Just like many deaf teens I go to a mainstream school with practically no other deafies, and I go home each night to a hearing family. I don't see my deafness as a loss but rather a gain. I love fencing and kayaking... And reading, definetely reading.

That's my identity and it's mine to keep; I'm done with being defined by stereotypical categories.

And anyway, "hard of hearing" makes me feel like an old person...