‘The Reality of Cochlear Implants’ by (Confessions of) a Deafblind Mother

Reality vs perceptions

Reality vs perceptions

SJ passed on a link to a very insightful blog, to our Facebook group and we liked it so much, that we think it deserves to be shared with everyone else.

The writer in this blog has remained very realistic about cochlear implants, which is very close to our readers’ experiences also.

It is somewhat dejecting to realise that the media has not been able to grasp the whole truth concerning CI’s – they give the impression that we will be able to hear perfectly well, almost instantly upon activation whereas that is not the case for most, if not all, of those who were inplanted.

Please visit ‘Confessions of a Deafblind Mother’ to read her very interesting article, ‘The Reality of Cochlear Implants’.

http://www.deafblindconfessions.com/blog/the-reality-of-cochlear-implants

🙂

Thank you.

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‘That Long and Winding Road…’ by Mervyn James

thisthatotherway

That Long and winding Road…

Has nothing to do with this article, I just like the tune…. 9 out of 10 people I meet have no idea I am profoundly deaf,  I could easily make them aware by using sign language, but people tend to put a label on you as a random member of some subculture based on not hearing anything if you do that, and I’d rather be seen as an individual who just happens to have a profound hearing loss.

People in my position and indeed, millions of others with various degrees of hearing loss, suffer huge issues of poor support and access where it counts, e.g. 999 areas and GP’s etc, even opticians and dentists don’t support you to have those all-important tests we all need.

Have you tried lip-reading your optician in the dark with one eye closed up half the time and with a test card written in Croatian? You take the point. Or the Dentist with their masks one, they don’t call me Gummy as a term of affection, they just keep taking them out till they get the right one.

Not even disability support areas and the Local Authorities provide what you need, either because the charity hasn’t the funds to pay for it, or the LA is unsure if you making an enquiry puts the onus on them to assist you, of course cuts affect everybody but we are always back of queue by default, because of the difficulty in defining the type of support you need, and, the actual availability of it.

By comparison, if you are a deaf person who relies entirely on sign language then you are 25 times more likely to get supported than I am, because my lip-reading is getting worse, and the access to text support is almost non-extant in Wales. Alternatively insist you are an illegal Migrant who speaks only an obscure dialect of Bantu and is a relative of Winston Churchill, then they queue up to help apparently.

I’ve lost count of asking areas for text support and then being offered sign language instead, it’s a bit like a Welsh speaker being offered a Spanish interpreter. As people with profound loss, we are easily identified as shoppers who only use supermarkets and always offer high denomination notes or coins in payment regardless of cost. That is because if we guess wrong how much the price is, we are up against it in communication terms. My biggest bugbear are shops that won’t just take your money for goods, but launch into lengthy discourse regarding BOGOF offers or what cards do I use or want, if you say you don’t have a  loyalty card they start thrusting papers at you to get one, I said you want my loyalty try to communicate properly.

I’m then in trouble because I cannot follow properly and there is some queue behind me, getting annoyed, and asking which planet I just arrived from. I usually say Neptune or Blaenau Ffestiniog and that seems to satisfy their curiosity…

My speech is OK, I’ve got a PhD in mumbling… although speech is an issue, because then people assume talking equals hearing and get angry when you cannot reply properly after.

No two people are the same, bit of a bugger but…. Sadly our Hard of hearing people suffer a great deal of denial, this is down to the fear of looking stupid to other people, ergo YOU.   Manufacturers of hearing aids hone in on that and we all see the adverts for ‘Hidden Hearing’ etc, which to my mind panders to that view. Why hide your hearing loss and then STILL look stupid if you miss something?  I’d be banning hidden hearing ads, I understand making them less obtrusive and even miniature, it’s an advance, but what you cannot see, you do not understand that’s the issue, and Hard of Hearing still insist they can hear everything so ask for it really.

This week is officially ‘Deaf Week’ but you won’t see me taking part in it, you will probably see a lot of deaf people signing who are an hyper-active but minor cultural promotion area, and of course charities promoting their wares, having assistive dog shows, and fund raising too.

Be aware lip-reading isn’t an exact science either, unless following less than 30% of anything spoken will do for you, or you have advanced A level in ESP studies. Mine goes from 24% to zero mostly. Then the ‘Nod’ kicks in, and everyone assumes you are either the worlds’ most attentive listener (and polite with it), or vying for pole position in the Village idiot category.

Lip-reading isn’t possible if you have your back to us, you are eating at the same time, or a poor speaker anyway. Goldfish impressions tend to look better on the fish to be honest. Don’t go with the Mime approach unless your name is Marcel Marceau…

On the roads, please spare a thought too, that person in front of you may be deaf we don’t have a label on our backs with ‘I’m Deaf please pass carefully.’ on it. So don’t just push us aside, or run your prams and buggies into us because we haven’t moved out of the way quickly enough. If you try, I’m liable to trip you up as you pass and blame the dog. Or if you have a wheelchair, I will almost certainly let your tyres down.

Statistics suggest one day it will be you too…  then remember what goes around comes back at you! What we need most is your patience, and a little extra time to ensure we know what is being said, thank you. I’m not ignoring you, (at least not today, I may well do tomorrow), but I really cannot hear you…

By Mervyn James….

 

‘Start With A Smile’ by Emily Owen

stillemily

On May 11th 2016, Emily Owen’s book called “Still Emily: Seeing Rainbows in the Silence” will be published.

Emily, who is deafened, was asked to give some tips to hearing people for when they meet someone who can’t hear. See what you think and let us know if you agree or not? 🙂

Start with a Smile

I could hear.

Then I couldn’t.

Overnight, I’d lost my hearing.

All of it.

I was deaf (still am).

I joined the 11 million people in the UK who have less than perfect hearing.

When I eventually began to emerge from the shock and depression and scariness of sudden silence, I picked up my ‘surviving hearing loss in a hearing world’ guidebook.

Or I would have done, had such a book existed….

The first time I told an assistant in a shop, “I’m deaf”, she looked terrified.

It was like looking in a mirror: I was terrified, too.

Where did we go after “I’m deaf”?

Neither of us knew.

I knew I could verbally tell her, “I’m deaf,” because I grew up with hearing and speech.

She knew she could hear me say, “I’m deaf,” because, well, she could hear.

What we didn’t know was how to bridge the hearing/deaf divide.

How to meet in the middle.

How to co-exist.

Since that day, I’ve had two choices.

  1. Become a hermit.
  2. Compile a bit of a guidebook of my own.

Tempting though option 1 often is, I went for option 2 (most of the time).

The first entry in my guidebook says, ‘remove the full stop after “I’m deaf.”’

Here are three tips for (hearing) people when they are met with the terror of hearing, “I’m deaf.”

Three tips for removing that full stop.

  1. Remember to relax.

Unless you happen to have a PHD or equivalent in communication, no one expects you to be an expert in dialoguing with deaf people.

We get that you are probably out of your comfort zone when you meet us.

Believe it or not, so are we when we meet you!

We don’t automatically know how to bridge that divide either.

But let’s start with a smile.

  1. Remember that communicating is about getting a message across.

If you and I can work out how you and I can bridge that deaf/hearing divide, that’s enough.

I speak a bit of sign language. My god-daughter doesn’t.

One day, in an effort to get me to understand the thrilling-to-a-three year old tale I kept misunderstanding, she resorted to waving her arms around.

She was trying to copy sign language.

She looked more like an over worked windmill.

But the combination of seeing her lips and seeing the windmill actually helped me.

To my shame, I can’t now recall this story that so obviously rocked her little world.

But I know I understood it at the time.

I’m also pretty sure that not many people use the windmill method.

And that’s ok.

In our own way, message was received and understood.

  1. Remember that we’re all different.

So you met someone last week who was deaf? And they could lipread what you said to them? Well that’s great. But, guess what?

We can’t all lipread.

A bit like just because some people can sing Opera, it doesn’t mean everyone can.

Some of us who can’t hear prefer to lipread, some prefer things written down, some prefer sign language, some prefer typing, some prefer….

Obviously, unless possibly you have the aforementioned PHD, no one expects you to be fluent in sign language but we’re pretty sure you can write things down. Or type them into your phone.

A good way to get started is to write/type, “how do you prefer to communicate?”

*note the question mark, not full stop*

And don’t forget your smile……

by Emily Owen.

 

If you wish to view Emily’s book via Amazon, please follow this link: https://www.amazon.co.uk/Still-Emily-Owen/dp/1910786438?ie=UTF8&qid=1462190333&ref_=tmm_pap_swatch_0&sr=1-1

Or alternatively, via Wordery, please follow this link: https://wordery.com/still-emily-emily-owen-9781910786437

‘Our Journey To Equality’ by Steven Mifsud, Founder of Direct Access Consultancy

Steven Mifsud

Mr Steven Mifsud

Slowly approaching the tenth birthday for Direct Access Consultancy, it has been an amazing adventure, but I can tell you it wasn’t easy. Over the last 10 years, we grew and grew, battling difficult times and overcoming tall obstacles, now we have provided access audits and access consultancy for over 10 Local Authorities/Councils, over 10 housing associations, over 650 schools and more than 2500 buildings.

My name is Steven Mifsud, I started my higher education life with an architectural degree, little that I knew, I would end up here running the company I started so many years ago. A few years after I finished the last minute exams and late night flat parties, I started working for Chester City Council (now known as Cheshire West Council) as an Access Officer. This effectively acted as my entry point into the disability access world as I was sent to take care of many community projects. Though it was a great experience, I was beginning to get fed up with the speed of that I was limited to by the red tape.

During my time as an Access Officer, I was head hunted by a large consultancy based in London, which gave me some great opportunities such as surveying land mark buildings. Within this time, I also managed a 300+ access auditing project for Brighton & Hove Council. Times were good now, but I felt something was missing. Unfortunately I was extremely frustrated that I was never with my family, more particularly my daughter Georgia. The work was also extremely deadline driven which a lot of the times meant to compromise the quality of the access audit reports in order to retain employment status.

Now, this is the good bit, one day I was approached by a large department store to undertake some access audits for them; thus how Direct Access Consultancy was born. After working for the consultancy in London, I learnt that access audits deserve precious time rather than rushing each project in the goal to finish more jobs, quality over quantity.

One job after another, year after year, the company grew and expanded and is now lead by myself with Judith acting as my communication support worker due to my hearing impairment. There has been some highs such as delivering a speech in Qatar on Accessible Sports on the behalf of the UKTi and extreme lows such as fractured family relationships due to my loyalty to Direct Access. The highest points in 10 years was not being privileged to access audit world famous sites such as The Roman Baths but hearing real sound for the first time in my life by having a Cochlear Implant and meeting my wife Judith.

DSC_0522-190x300

Judith & Steven.

I have built a company that is unique to our competitors, a disability access auditing service provided by people affected by disabilities, thus a unique edge and perspective to access projects. Disabled access auditing is for disabled people, so wouldn’t it make sense that disabled people are the best people to consult on how their lives can be made easier?

Yes, this is effectively my autobiography, but my life is basically the story of Direct Access Consultancy as I’ve devoted the majority of my working life being in the company. I love what I do as it combines my personal insight into disability, my passion for architecture and contributing to creating a society that is equal and fair regardless of what your physical difficulties may be. Here is to another 10 years of leading Direct Access Consultancy.

Steven Mifsud

Founder of Direct Access Consultancy

Read more about what Steven’s company does – http://www.accessaudits.com

They also do a lot of access audits for schools, over 800 to date.

One of their current key projects  – http://www.accessaudits.com/direct-access-appointed-access-consultants-for-new-victoria-square-development-woking/

A bit about what their access audits are about and what they entail – http://www.accessaudits.com/access-audits/

Some of the clients Steven have worked, including clients like Bodelwyddan castle, Roman baths etc etc http://www.accessaudits.com/our-clients/

Steven has also done a bit of free work (when he can) to help his local community such as Nantwich museum http://nantwichmuseum.org.uk/direct-access-audit/

Sarah-Jane Gillman’s version of “Uptown Funk” (in BSL)

Lyrics to “Uptown Funk” by Mark Ronson.

Doh
Doh doh doh, doh doh doh, doh doh
Doh doh doh, doh doh doh, doh doh
Doh doh doh, doh doh doh, doh doh
Doh doh doh, doh duh (Aaaaaaow!)

This hit
That ice cold
Michelle Pfeiffer
That white gold
This one for them hood girls
Them good girls
Straight masterpieces
Stylin’, wilin
Livin’ in up in the city
Got chucks on with Saint Laurent
Gotta kiss myself I’m so pretty

I’m too hot (hot damn)
Call the po-lice and the fireman
I’m too hot (hot damn)
Make a dragon wanna retire, man
I’m too hot (hot damn)
Say my name you know who I am
I’m too hot (hot damn)
And my band ’bout that money
Break it down…

Girls hit your hallelujah (ooh)
Girls hit your hallelujah (ooh)
Girls hit your hallelujah (ooh)
‘Cause Uptown Funk gon’ give it to ya
‘Cause Uptown Funk gon’ give it to ya
‘Cause Uptown Funk gon’ give it to ya
Saturday night and we in the spot
Don’t believe me just watch (Come on)

Doh
Doh doh doh, doh doh doh, doh doh (Hah!)

Don’t believe me just watch

Doh
Doh doh doh, doh doh doh, doh doh (Hah!)

Don’t believe me just watch
Don’t believe me just watch
Don’t believe me just watch
Don’t believe me just watch
Hey, hey, hey, oh!

Stop
Wait a minute
Fill my cup put some liquor in it
Take a sip, sign a check
Julio, Get the stretch!
Ride to Harlem, Hollywood, Jackson, Mississippi
If we show up, we gon’ show out
Smoother than a fresh jar of Skippy

I’m too hot (hot damn)
Call the po-lice and the fireman
I’m too hot (hot damn)
Make a dragon wanna retire, man
I’m too hot (hot damn) {hot damn}
Bitch, say my name you know who I am
I’m too hot (hot damn)
And my band ’bout that money
Break it down…

Girls hit your hallelujah (ooh)
Girls hit your hallelujah (ooh)
Girls hit your hallelujah (ooh)
‘Cause Uptown Funk gon’ give it to ya
‘Cause Uptown Funk gon’ give it to ya
‘Cause Uptown Funk gon’ give it to ya
Saturday night and we in the spot
Don’t believe me just watch (come on)

Doh
Doh doh doh, doh doh doh, doh doh (Hah!)

Don’t believe me just watch

Doh
Doh doh doh, doh doh doh, doh doh (Hah!)

Don’t believe me just watch
Don’t believe me just watch
Don’t believe me just watch
Don’t believe me just watch
Hey, hey, hey, oh!

Before we leave
Let me tell y’all a little something
Uptown Funk you up, Uptown Funk you up
Uptown Funk you up, Uptown Funk you up, uh
I said Uptown Funk you up, Uptown Funk you up
Uptown Funk you up, Uptown Funk you up

Come on, dance
Jump on it
If you sexy then flaunt it
If you freaky then own it
Don’t brag about it, come show me
Come on, dance
Jump on it
If you sexy then flaunt it
Well it’s Saturday night and we in the spot
Don’t believe me just watch (come on)

Doh
Doh doh doh, doh doh doh, doh doh (Hah!)

Don’t believe me just watch

Doh
Doh doh doh, doh doh doh, doh doh (Hah!)

Don’t believe me just watch
Don’t believe me just watch
Don’t believe me just watch
Don’t believe me just watch
Hey, hey, hey, oh!

Uptown Funk you up, Uptown Funk you up (say whaa?!)
Uptown Funk you up, Uptown Funk you up
Uptown Funk you up, Uptown Funk you up (say whaa?!)
Uptown Funk you up, Uptown Funk you up
Uptown Funk you up, Uptown Funk you up (say whaa?!)
Uptown Funk you up, Uptown Funk you up
Uptown Funk you up, Uptown Funk you up (say whaa?!)
Uptown Funk you up
Aaaaaaow!

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

sara

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.

IMG_3040

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.