‘A Few Snapshots Of My Life As A CODA’ by Sara Huang

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As far as CODAs go, I was a pretty straight-laced kid. I never snuck out and tried my best to follow household rules. But there were definitely times when I used my parents’ deafness to my advantage. I loved to listen to music LOUD. I’d crank it up at home and my parents were none the wiser. Other neighbors apparently griped and called us as THAT house. The loud house.

Going to backtrack. For the first seven years of my life, I was home-schooled by my mom and pretty much existed in a deaf bubble. During those years, I developed some “deaf habits”. I spoke VERY loudly, never really cared about how loud I was being, copied the way my parents pronounced words (musk-el instead of muscle) and always read books out loud. I never learned to read silently. I’d pass gas whenever I wanted, not knowing it was embarrassing to do it in public. When I finally went to public school, carrying on with all these habits, I got a rude awakening. My peers thought I was very odd and I was often excluded. I had a very lovely teacher though. She got me though some very tough times.

I also went through a period when I thought my parents weren’t really deaf. I was young; maybe six. At the dinner table, I asked my mom, “Are you really totally deaf?” She answered “Yes”, but suspicious six year old me demanded proof. I screamed at the top of my lungs and asked if she heard me. She said “No.” Unsatisfied, I shrieked even louder and asked again. Answer was still no. Stubbornly, I took a deep breath and screeched as loudly possible. I asked if she could hear that. She said, “Barely,” and told me to cut it out. I stopped questioning her after that.

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Mom

I was also one of those CODAs that couldn’t sign well. I developed odd habits. At first, I’d sign with just one hand. Then I became completely reliant on fingerspelling everything. My parents tried to break my habits, but I wouldn’t stop. Communication issues became a major issue later on, especially when I was getting bullied at school. My mom would ask me what the matter was because she could see I looked depressed, and I’d just clam up because I didn’t know how to express my feelings to her.

I can sign pretty fluently now. I think it happened after I moved to Taiwan. I realized how precious my family was and really wanted to interact with my parents on a deeper level. I studied books, watched YouTube videos, and Skyped frequently with my mom. We can talk about almost anything now, and I’m still learning. I came open up to my parents about just anything.

Unsure how to wrap this up, but I hope you have enjoyed these few snapshots of my life as a CODA. It is a major part of my identity and I am proud to be one.

Fin.

By Sara Huang.

Sara Huang with a grasshopper made out of grass.

Sara Huang, with a grasshopper made out of grass.

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The EU Referendum Leaflet

On the back of our recent post supporting Drip Media’s survey, a petition was also engineered, despite low demands; it is only fair a visual version of the EU referendum leaflet is/was made.

Whilst we are eagerly waiting for the official government version, which we hope will be out very soon, RAD has made one of their own videos (please note, this is not the official government version) from written information available to them.

‘EU Referendum in BSL Survey’ by Drip Media

The EU (European Union) referendum leaflet is in just written English, large print and audio CD. There are no visual materials for those who rely on sign language hence why, I support this video by Drip Media in trying to gauge just how many people would like to see the same content available to them so they too, can make an informed choice however which way they would like to vote.

Their video is in BSL yet it is captioned to be inclusive of all.

Please complete their survey in order to assist them in achieving what I hope, will be a successful and fair result. This will only take a minute of your time.

http://www.dripmedia.tv/eureferendum

Thank you for your time and patience.

~ SJ (Sara Jae)

‘Confessions Of A Raving Lunatic’ by Lesley Kiddell-Spencer

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Lesley Kiddell-Spencer and her darling grandson.

Bit about me, I went deaf at seven (that’s not great when you are a Dr Who fan and love music) due to meningitis of course. I have two deaf children (who married deaf spouses) and I also have five grandchildren, all deaf except one. I tell my daughter-in-law, Kaizen must belong to the postman, so you see I have my very own deaf club.

Married 3 times, only one of whom was deaf, I tend to trade them in when they fail their MOT, but my current one is a lovingly restored classic car so he will be fine.  My first husband had to deal with me blasting the chicken instead of basting it as I read the recipe book wrong and he couldn’t understand why I kept going to the kitchen to switch the oven on full blast then back down again. My current one who I met on a dating website had a heck of a shock coming face to face with a whole deaf family when he had never met a deaf person before…you can imagine communication was hilarious.

I am old – 55, and have spent the best part of my life fighting stupid systems made up by idiots with nothing better to do.  I was in the radical FDP – that was a brilliant time, thousands marching for recognition of British Sign Language, I had to make a speech at Trafalgar Square, so I was plied with whiskey beforehand by the other committee members as I was a wreck, and can remember nothing of it except I probably made a right idiot of myself.  We were in the media often… ‘Lesley and her comrades’ in the Guardian newspaper (their words not mine but boy did it turn me into an egoistic eejit) I still smile about that now.  However my life is like the Coldplay song “Viva La Vida” go read it and you will see the higher up you go, the greater the fall.

I have long since learnt, everyone is different, now that was hard because I wanted everyone to think like me because they jolly well should, people can be wonderful, and on the other extreme nasty.

Ten years or so ago I jumped out of my ivory tower as CEO of a deaf organisation and regenerated myself as a female Lovejoy, becoming an antique dealer which had always been my passion. I get hold of the most weird and wonderful items, and meet equally weird and wonderful people, however the antique world is a bit like the Mafia. Fortunately, I have blonde hair, green eyes (never mind fat and 5ft) not to forget deaf so I have been adopted very well, and boy do I play the deaf card, otherwise I would have found a horse’s head in my bed by now.

In my spare time I also take all kinds of deaf people on guided tours of the Richard III centre in Leicester – a man I totally am in love with, despite the fact he has been dead some 500 years plus. Yes, I am eccentric too. Or you can find me in a field full of people and mud, digging up the past with archaeologists (no, I promise I don’t pinch the stuff to sell!) I once found some bones in a Roman children’s cemetery and I was scared stiff, until they told me it was an expired rabbit.

What do I want to see? Utopia, where everyone gets on and dances around with flowers in their hair singing and kissing, but oh my days that’s never going to happen.  Technology has brought out a terrific change for deaf people, but with that has come out a new kind of nastiness with respect, morals and tolerance flying out the window into cyberspace and I sadly realise deaf people are never going to unite.  I fortunately have thick skin but many younger than me do not and are open to attacks, which can seriously cause a lot of grief, we have sadly reverted back to school day bullying.

As for expecting the whole world to change to understand hearing loss, and go mad, when they don’t… I was once like that and believe you me it is arrogant to think that because no one has the right to expect everyone to revolve around you – even if you are disabled.  All minority groups have these issues, it’s just a case of trying to teach and have an open mind.  There will always be downright rude nasty horrible people, I was probably one myself and so were you… I learnt to cut out the negative influence in your life.

I saw a saying recently which sums me up perfectly

“Don’t confuse my personality with my attitude… My personality is who I am, my attitude depends on who you are”

by Lesley Kiddell-Spencer.

‘For Better Or For Worse’ by Robert & Helen Oxlade

World Ovarian Cancer Day (WOCD) falls annually on the 8th of May.

Back in 2014, her darling husband Robert, in a bid to raise awareness, shared Helen’s story on Facebook. We at ‘The Tree House’ wishes to help Helen and Robert, raise even more awareness regarding Ovarian Cancer by bringing their experience, to your attention.

8th of May 2014.

Today is World Ovarian Cancer day, and it is today that we are telling everyone on Facebook Helen Oxlade’s story. If you only read this far, please go and see your GP if you think you have any of the symptoms of ovarian cancer – http://www.cancerresearchuk.org/cancer-help/type/ovarian-cancer/about/ovarian-cancer-symptoms

After Helen and I were engaged in 2011, and with Helen’s Mum and my parents’ blessing, we started to try for a baby. Sadly, we didn’t seem to have any luck, so Helen went to the GP to start to investigate why.

As part of the investigations, Helen’s various blood tests didn’t show any cancer, however there was a tennis ball sized cyst on one of her ovaries, which in turn had moved and attached itself to her womb. The ovary and cyst were removed in March this year. We were given the life changing news ten days later.

Although they think it was contained to the ovary they removed, Helen has early ovarian cancer. This was only half of the news, since part of the treatment was a hysterectomy as quickly as possible, to prevent the cancer spreading. The doctor told us that we risked Helen’s life trying to save any eggs, so that wasn’t an option.

The 14th of March 2014 was the day our hopes and dreams of having our own family were shattered, and our lives turned upside down with uncertainty for what will be happening in the future.

On the 23rd of April, Helen returned to hospital for a hysterectomy. There were quite a few complications, but she is being strong, and is slowly recovering. Thank you to all of our friends who already know, and have offered their help and thoughts.

Tomorrow (9th of May) we return to the hospital for the results of the biopsies taken during the hysterectomy. Given our situation, I believe we have been lucky, and have caught the cancer early. Ovarian cancer is one of the more aggressive cancers, and often goes undetected. All women are able to get this horrible cancer, so please, if you think you have the symptoms, go and see your GP.

This is most definitely the “for worse” bit mentioned in our wedding vows. I hope she knows how much I love her, because sometimes I’m distant and hiding in my shell with worry, but I think and hope we are going to be very lucky.

Please like and share this video so that we can help spread awareness of this terrible cancer.

By Robert and Helen Oxlade.

Exactly one year after the dreadful news of the ovary biopsy result Helen was given, she admirably made another video.

We are truly honoured, being able to share Helen & Robert’s experiences, with you. 🙂

Yes, I Can.

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I saw an advert on TV quite some time ago which used the words “I can” and this advert inspired me to put the question to our dwellers to see, what they CAN do….

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Here are some of their answers.

I sang in a choir (a hearing one), played clarinet to grade 8 and the obvious one that most people seem to be shocked about “Oooohhhhh my gawd! You can driiiive! Cleevverrr!”

My friends think I can do everything and even things I say I would find hard to do because of my hearing loss, they’re the ones telling me: “Why not, go for it”, so I guess I’m lucky. However, years ago, some of my family members and relatives seemed to think that it was “amazing” that I had got a university degree (as if deaf meant stupid) and my sis in law once told my mum that I was “lucky” to get a good man as a husband, due to my hearing loss!

I had a similar experience – my husband is hearing and someone in his family said he ‘must find it hard’ with a deaf girlfriend (this was very early on) We’re all people – hearing or deaf it doesn’t matter, some people have strange/misguided ideas about relationships and equality. I tend not to think in terms of ‘I can do this despite being deaf’ – in my eyes, I think being deaf has given me more determination. Life is tough for most people, I think everyone has potential and it is often what we do with it and the resources we have that make the difference between ‘I can’ and ‘I can’t’.

I’ve had hearing people say to me ‘You’re so inspiring, being deaf and doing a degree!’ and…. ‘how can you hear music?’. I am a singer and a musician because I can.

I’ve met some people who seem shocked to learn that deaf people can dance.

I had a boss who shifted my mindset from can’t do to can do, now I’m talking on phones, gibbering at Portuguese in work, smiling a lot more and having fun!

My old school told my mother that I would not be able to do music or French?! I did both in the end, at Mary Hare School.

I was told I couldn’t rock climb once… because I was deaf (said by a professional climber)

I was told at 16 that I couldn’t go to university as I was deaf but I went to four in the end.

I didn’t go to Uni – I was often asked why with sympathetic looks “Was it because you are deaf and you would find it difficult?”, “ No, I chose to travel….”

I couldn’t sign 3 years ago however now I can have a conversation in sign language. 

I can choose when I don’t want to hear. 😉

I have friends who kept relying on people to help them, I told them that they could do it themselves. They assumed that because people were there for them, they felt they couldn’t do it themselves. I decided to show them that they CAN do it.

Empower yourselves, because you CAN and you WILL.. 🙂

Positivity rules, what else CAN deaf people do?

~ SJ (Sara Jae)

(May you now realise, where the inspiration for the #ICAN posts came from.) 🙂

‘Common Sense’ by Andrew Arthur

This blog entry, ‘Dear Deaf People With The Wrong Facts.’ is an interesting read, because it does give the other side of the picture. When I was at university they were big time on taking the “balanced view”. This often means looking at the other person’s point of view. In my opinion the Deaf part of our community are just not doing this. They are only interested in their point of view and nobody else’s.

This is particularly obvious in the replies at the bottom where we see people desperately trying to make the case for ASL and quoting what they see as facts in order to disprove the “Oral” argument. But you can see clearly that they are not presenting facts at all they are just coming up with anecdotal evidence, that is to say stories that “prove” the point. They tell us that as life long sign users they lead a full and productive life and are happy as they are. This is in fact the worst kind of evidence.

The reason for this is that quoting just one case or recounting a story of just one success does not prove that the whole argument is wrong. It’s very important to realise that. This is what we are taught to rely on at university and people who have not had that type of education, one might even say indoctrination tend to find it hard to accept reasoned discussion.

The *facts* are that overall Deaf people tend to have second class lives. They overall lack job security, career advancement, financial security. Yes, fine there are exceptions. I’m sure there are Deaf millionaires who have forged out a great career and all the trimmings. But far more common are people who live in low grade housing, rely on benefits, only circulate in the Deaf world and are generally deprived.

We know this because numerous surveys of the Deaf world over a period of years show that people experience all these things. That is why the *few* such as Nyle Di Marco are so celebrated. The underlying message is “You too can be like this” and actually the _evidence_ is “No you can’t”. So really these people who bang on about how great it is to be Deaf are only talking about their *own* situation. It doesn’t necessarily mean that we can all be like that.

But if you read those replies, a lot of them become personal. They are like “how dare you offend me with this heresy”. It’s almost like someone has insulted their religion and we all know where that leads. It just isn’t helpful.
But also as I have said before, America is not Britain. In the US there are a huge number of Deaf people and many are able to live in signing communities and work as Deaf people. In this country the opportunities to do that are limited.

So there is a danger in emulating the American experience too closely. In this country if you want to live a Deaf life you have to be prepared to travel long distances to organised events but in the US there are enough people in one area to make it possible to have local events.
Americans do travel much more than we do but the whole country is geared up to it. One of my friends travelled up to London yesterday to see her daughter’s new baby. A mere (by US standards) 250 mile trip. In the US they chuck a few necessities in the car and do the journey in an afternoon. However I had a text from my friend to say how exhausted she was from the journey, which she did by train!

Having said that, people here can and do live in deaf communities, I know for a fact that Bristol has a thriving community whereas Cornwall does not. In fact the deaf club in Bristol is negotiating to buy their own building. In Cornwall there is only one club, it is miles away from the rest of the county (Camborne) and I am told that actually the hearing helpers outnumber the deaf members!

So we’ve got to be sensible about this. There is this attitude of “Our gang, your gang” … ours is better than yours. But come on! We are talking about people’s lives, not rival football teams! I’d like to think that the Tree House can help people to look beyond the partisan attitudes just as the anonymous writer has done in that blog. I’d like us to be able to say “Of course it’s OK to be a signer. Of course it’s OK to be a lipreader, Of course it’s OK to use whatever hearing you have”.

To quote a certain Dodgy Dave… “We’re all in this together” …. but not quite in the way he meant, I think!