Getting the eyes checked: Tick

13 09 2010

PhotobucketThe eyes are sooo important. I needed a contacts lens checkup and popped into my optician this morning. It’s Tricky Dicky Time.  Today was a different experience with my new cochlear implant. (It’s still a baby, so it’s still new and exciting.)

I was annoyed with the horrible music they were playing in the shop – I had never noticed this before.

In the examination room, I picked up the loud hum of the air conditioning unit (I had never noticed this before either) and changed my cochlear implant setting to ClearVoice high, which cut out the hum. Now I could more clearly focus on the optician’s voice. She started talking and turning around so I told her I need to lipread. From then on, everything went swimmingly.

The equipment for the checkup is straight out of the control room in Star Trek. A huge pair of ‘glasses’ is swung from the wall to the front of my face and I fit my chin on the chin rest. I peep through the holes and I can see the optician’s face through one tiny round window, then the other. I am asked to say which letters I can see on the wall chart, then if green and red look the same on the wall, do the letters look sharper or not as she switches lenses.

Then we get to the ever-tricky part. She needs to look at the internal health of my eyes. To do this, she needs to switch off the light, and then I’m rendered unconscious incommunicado.  During this checkup, I always find it tricky as I am unable to either hear the optician tell me what to do or to lipread instructions in the dark – ‘Look up’, ‘Look straight ahead’ etc. I have devised coping strategies for this. I always remind them of my need for visual clues and at the same time as giving me instructions, they will point when telling me where to look during the checkup. Luckily, there is just enough light to see their finger point the way.

Today, however, I discovered I could hear *and understand* what she said in the dark. It made the experience much easier, quicker, and less stressful. Another little step up the cochlear implant staircase of progress! Whoo Hoo!





Better telephone access for deaf people

2 09 2010

A news release from TAG hit my inbox today, calling for better access to telephones for deaf people. This saga is really dragging on, but it wasn’t easy obtaining captions either. Dan offers a possible solution. Read on …..

NEWS RELEASE

Government call for improved disabled access for 2012 must include better access to the telephone for deaf people

2 September 2010

Government must take the initiative to modernise telephone relay services for deaf and hard-of-hearing people if its call for companies to improve disabled access in the run up to the 2012 London Olympics is to mean anything to deaf people, says TAG, the deaf electronic communications consortium.

The Government-commissioned report 2012 Legacy for Disabled People: Inclusive and Accessible Business shows that almost one-third of disabled people have difficulty in accessing goods and services they want to use. Because of poor access to the telephone network, the percentage of deaf and hard-of hearing people unable to access goods and services is very much higher. As a result the economy suffers and deaf and hard-of-hearing citizens are marginalised.

Ruth Myers, Chairman of TAG, said: “This Government report reflects what TAG has been saying for a very long time: deaf and hard-of-hearing people are excluded from many social and commercial opportunities because of the antiquated way that they must communicate with the hearing world via the voice telephone. Email and texting communications only meet some needs – access to voice telephony is crucial for many employment, commercial and social purposes.

“TAG is campaigning for new types of relay services, such as captioned telephony, video relay and IP relay services, all of which are already available to deaf people in some other countries. Everyone accepts that the provision of additional types of relay service is the way forward, but the trigger for action has to be a Government commitment to find the necessary funding mechanisms. The costs are not high in comparison to the economic and social benefits which will accrue.

“We call on the Government to act now to ensure that modernised telephone relay services for deaf people will be up and running in 2011, ready for use by deaf people to make their booking arrangements for the London 2012 Olympic and Paralympic Games.”

TAG is a consortium of the main UK deaf organisations concerned with electronic communications and is campaigning for improved electronic communications for deaf, deafened, hard-of-hearing, and deafblind people, and sign language users.

Follow TAG on Twitter @DeafTAG

Telecommunications Action Group

Media Contact

Stephen Fleming at Palam Communications
t 01635 299116 (voice)
e sfleming@palam.co.uk


Dan says this one is a no-brainer to fix – for free.
  • Go to i711.com and sign up. You’ll be prompted to be assigned a relay phone number.
  • You will enter your address (for expanded 911 service); and then choose an open number in the pool from the pop-up. Write this number down.
  • Now, you can make unlimited free outbound relay calls from your web browser.
But Wait, There’s More!
  • Now, minimize the i711.com browser window — We’ll come back to it in a few moments.
  • Next, in a new browser window, go to AIM.com and get a screen name (skip this step if you already have one). Then, either download the free AIM software, or if you already use another IM service (ICQ, Yahoo Messenger, MSN, Google Chat, etc…), download the free Trillian IM software, which will funnel all of your IM services into one small app on your desktop.
  • Install & configure your AIM or Trillian software to automatically launch on startup, and also to autoconnect on launch.
  • Go back to the i711.com window and enter your AIM screen name. You can now close that window.
  • Click back on AIM or Trillian and add i711relay to your buddy list. Send an IM with “Hello” in it and you’ll get an autoreply with a couple lines of text.

You now have two additional ways to handle calls:

  1. You can place a call via AIM by sending an IM with the phone number in it.
  2. You can now also receive voice calls on the free number you received when you signed up a few minutes ago.

Now, you can give out that number to hearing friends, family, & businesses as your voice number. When someone dials this number, they will get a relay operator who will send you an IM, and initiate the call.

But Wait, There’s Still More!

Let’s say that the only internet access you have is on a mobile (Blackberry, Treo, or iPhone) via a $35/month data-only plan for the hearing impaired. Simply load the AIM or Trillian software on your mobile, and you can place and receive relay calls, just like on your PC in your home.

Now, let’s say you live in another country and work for an American company: simply enter the US address when you sign up for the i711.com service. You will now have a free phone number in the United States for your hearing business associates (and friends & family) to reach you via relay.

How is this all possible… And for free when one end of the relay call is in America?

Every phone line in the United States is taxed about 50 cents per month to fund relay services for the hearing impaired, allowing free enterprise services (such as i711.com) to thrive in the open market providing services for us. The simple fact is businesses can leverage internet and telephony technology to provide voice relay and turn a profit while doing so.

What a country!


Personally, I would love to see the return of CapTel to the UK. CapTel uses a CapTel phone handset, and WebCapTel uses the internet and any phone including a mobile phone. I was lucky to be able to use both in my job and I found it fantastic – no one realised I was deaf. Unfortunately the company supplying the CapTel service was unable to continue providing it, as it was too expensive to do this without public or government funding. Hence the campaign by TAG to improve telephone relay services in the UK, by either improving Text Relay (formerly Typetalk) or appropriately financing the provision of services such as CapTel and VRS such as SignVideo. You can see SignVideo in action here, provided by Significan’t in London. I found the screen display very clear and could lipread the person.

In the US, you have more than one CapTel provider. You can even get it for Blackberry!

CapTel
Hamilton CapTel
Sprint CapTel
Ultratec

There is also a service called PhoneCaption.





C.I.B.O.R.G. D.A.Y.

27 02 2010

It’s my big day. Bye bye crappy hearing aid. Hello bionic ear. I’m calm. Still asking myself, Am I REALLY deaf enough for a cochlear implant?

THURSDAY 7AM

I got to the hospital and sat in reception, listening to my iPod with my last few minutes of bilateral hearing, until they called me upstairs to the B ward at the Royal National Throat Nose Ear hospital in London. I went through all the prep with 2 nurses – a form detailing any medical problems, and they took MRSI swabs, my blood pressure, and temperature. I met with the surgeon who marked my neck on the left side, he said the surgery should take about 2 hours. The anaesthetist also came to talk to me, then my friend Karen arrived. I chatted with her for the rest of the morning as my surgery was scheduled for 1pm.

I was totally calm and remained so for the whole CI experience – I think this was because I had done so much research and watched a video of CI surgery, and I had the courage of my convictions, I knew I was doing the right thing. This morning, on my way in, I tried listening to my iPod with just my left ear, and I couldn’t even follow the melody of my favourite U2 songs, whereas I was easily able to do this with my right ear. Rock on!

I was given a hospital gown, stockings to stop blood clots, and plastic knickers(!). Wow, this was a whole new fashion thing going! I eyed them nervously until the last minute, the nurse had to almost force me to get all that gear on. The stockings made me laugh as they have holes in the bottom of them … to tickle my feet when I wake up maybe?

THURSDAY 1PM

I walked upstairs to the operating theatre’s recovery room with a nurse and hopped onto a bed. I was to get a general anaesthetic. The nurse covered me with blankets and hooked me up to monitors, with monitor pads stuck to my chest. The anaesthetist had a huge syringe which looked like it was full of milk. He gave me the anaesthetic and looked at me …. I looked at him … he looked at me .. I started laughing and said “It’s not gonna work is it?!” then the next thing I remember is waking up, I was wide awake very quickly and they took me back to the ward with a big grin on my face. It was the best sleep ever and I wanted to do it again! My surgery had taken 4 1/2 hours.

THURSDAY 6PM

I felt very happy and wide awake. David had arrived and he and Karen had been waiting for 4 1/2 hours, they were worried as they had been told surgery would be about 2 hours. I had no pain at all apart from over the ear where the bandage was too tight – it felt as if my ear had been bent over before being bandaged up. I asked the nurse to loosen it for me and that helped a little.

The surgeon came to see me, Prof Saeed from Manchester, who has 15 years experience of CI surgeries, and I am his 294th CI patient – so that’s a very experienced CI surgeon! He said all 16 electrodes are working and the operation was perfect, he was totally thrilled. He asked me to close my eyes and smile, to check that my face is working ok. I then had dinner, I was starving by then, and I discovered that I can still taste food – I had been told I might lose my sense of taste after surgery. I showed the internal part of the cochlear implant to Karen – I had a dummy one with me – and my nurse was absolutely fascinated by it. From the moment Karen and David arrived, I didn’t stop talking, and I was chatting to Amanda and a few other friends via my Blackberry, so I feel as if my hospital stay has been a very enjoyable social event with a good sleep thrown in!

THURSDAY 11PM

I tried to settle down for the night but there were too many pillows, the ward was too warm, my stockings were tight, the bandage was hurting, the tinnitus was roaring like a freight train in my new CI ear. A nurse spoke to me about my pillows but it was dark on the ward and she is dark skinned ….. I gave up at that point! Too tired to explain good communication tactics! I eventually got to sleep after 2AM.

FRIDAY 6AM

A nurse poked me awake – grrr – to take my blood pressure and temperature. Another nurse came to take the bandage off and she pointed out a big swollen bruise on my chest which I hadn’t noticed. Must have got that when the surgeon had to put his foot on me to keep me down …

I had breakfast of cornflakes, tea and toast. I went back to sleep and woke to see Karen there. The nurse removed the tubes and needles from my hand and we headed off to the xray department, where they xrayed my head. The xray is to check the CI has been put in the right place. I collected my discharge note, sick certificate, and confirmed my checkup date. I got dressed and had a quick lunch, then we left for home.

FRIDAY 1PM : Home 🙂

I was able to walk and my balance was good, but I felt quite unreal and had to walk slowly. I wore a pashmina to cover up the crazy hair, I’m not allowed to wash it for a week. The pashmina worked well as it was light and comfortable. The scar looks good, it’s a lot smaller than I thought it would be, and my hair will cover it anyway. I think it looks like a very professional job.

There isn’t any pain in the ear itself. The ear is numb and it’s sore going down the neck, and I have a sore throat/jaw/shoulders/head, bruises on the back of head and chest, it hurts to turn over or to get up, I feel like I’ve done 500 situps, but overall, the operation is a breeze really, and I wouldn’t have any qualms in going through it again for a 2nd CI if I go for that. I’d get to have another go at the drugs and pants thing. I think the worse thing was the tinnitus yesterday, I didn’t expect it to get worse, and to the level that it did, of a freight train, so that was a shocker.

What I found difficult during my hospital stay was communication with the nurses and surgeon – they were foreign and I couldn’t lipread them. Luckily, David can sign so he translated for me. It’s a shame the nurses and doctors don’t get deaf awareness training. It really is so important, so that the patient has a better hospital experience – it’s not just about the medical support, it’s about the holistic support. The psychological aspect is important as well. It’s like yin and yang. I had to constantly ask nurses to repeat, to look at me when speaking, to write it down. It was so frustrating and tiring.

SATURDAY

I woke up to an amazing thing …. silence. No tinnitus! It has been coming and going today but it’s quieter than yesterday. At this moment, as I am writing this, there is silence. It is bliss. I have had constant tinnitus all of my life and it really sucks, but you can’t do anything about it except learn to live with it. I managed to get 7 hours sleep and I feel much more clear headed today. Physically I am really aching and don’t feel up to doing anything. The numbness on the left side of my tongue has gone away and my lips are becoming less numb. I’m amazed at how much better I feel.

I’m really happy because it was a good surgery and the surgeon was thrilled, and by having the CI on the worse ear, I had nothing to lose and so much to gain. It really helped to have such great support throughout from my friends that have CIs, they have been through it themselves and are great at offering reassurance and advice. My hearing dog Smudge was totally spoiled when I was in hospital, he really enjoyed all the fuss, new toys and treats, and is probably wondering when I’m going away again!

I’m so unbelievably TIRED, but I am a very happy bunny! For now, it’s back to the sofa for tea and chocolate biscuits…





Clear voices

20 01 2010

voicesI have been getting to know a lady called Amanda with a cochlear implant and seeing how she copes. She has a blog about her cochlear implant, Journey Through Advanced Bionic Cochlear Implant UK, but it’s so much better to hear about the CI experience at first hand.

I have been amazed as she is just like a hearing person.  Before her CI, she was just like me, profoundly deaf and lipreading what she could. She has had her CI for one year. What has been interesting to see is how she interacts with hearing people and I … um… don’t.

I worry about talking to hearing people because I know it is likely I won’t be able to understand them. Plus, they might not be able to understand me. So when I go to social events or have to network for work, I am petrified.  Lipreading is soooo hard. Most people mumble, talk with food in their mouth, look away when talking, maybe they have a moustache or beard, there is too much distracting background noise, the list goes on and on. When networking, I don’t know what to do, how to behave, or what to say, because I have never heard other people network a crowd.  Why doesn’t someone teach deaf people how to do this? It’s not a skill that I can just pick up by observing other people, I have to be told how to do it.

We went to the SWPP exhibition in Hammersmith.  Amanda is a wedding photographer and offers a unique service producing captioned wedding videos. Amanda was networking with the exhibitors, networking with a capital N. She made it look so easy. She had no trouble hearing people and she was firing responses right back at them. Afterwards, she said it was so funny, I was stood there like a rabbit caught in the headlights, watching them, back and forth, back and forth. I didn’t have a clue most of the time what was being said.

The same thing happened in a pub. We went to a large brewery-run pub and I had my hearing dog with me. The bar staff said I couldn’t bring my dog in. I explained he is a hearing dog and just like a guide dog, he is allowed everywhere. She kept saying they have food and don’t allow dogs. I couldn’t really understand her as she had a foreign accent, so Amanda did the talking. The bar staff kept going to speak to the manager and she said we could go elsewhere or sit outside. Outside? In the freezing cold, snow and ice on the pavements, and it was dark …. why should I want to?? I said you are discriminating against me, because you are telling me I can’t have my hearing dog with me, and I need my dog for my disability. She said she isn’t discriminating against me. I don’t know how she worked that one out. In the end the manager came out. I couldn’t understand him either so Amanda did the talking. In the end he apologised and said he had looked up hearing dogs on the internet and it is okay to have him in the pub. He said, however, that the bar staff was only doing her job. Oh really…..  ! It is up to them to know the law and that there are 7 different kinds of assistance dogs and they are all allowed into places with food, as long as they have their coat on. I tried to explain but both the bar staff and manager kept talking over me and talking to Amanda. Amanda said my voice is too quiet and they couldn’t hear me, so they wouldn’t respond to that but prefer to respond to her, as she could speak more clearly and loudly than I did. I always forget that you need to raise your voice in noisy places as I can’t tell if someone can hear me or not, I can’t tell if my voice is too quiet or too loud.

So how we project ourselves and how we respond to other people talking, really affects the communication between a hearing and deaf person. The hearing person needs patience and understanding of the difficulty and communication tactics, they need deaf awareness; and the deaf person needs understanding of what is difficult for the hearing person and how to project their voice, they need hearing awareness. Not enough training going around, is there!

The CI will really help to bridge this communication gap as I have seen with Amanda. With the CI, there is still difficulty for a lot of people with discriminating voices in noisy environments. Advanced Bionics, who I have chosen for my CI, have a new software programme coming out in the UK in March, called ClearVoice. This automatically analyzes and adapts to different situations, separating noisy sounds from speech. Just what I need!  I tried listening to a ClearVoice demo with my hearing aids and I could tell the difference even through my crappy hearing aids. I’m really excited and can’t wait to try it out for real. Whoo wooo wooo!

To find out more about ClearVoice, go to ClearVoice demonstrations.





Bloody morons

8 12 2009

I’ve booked a place on an arts course at the City Lit. I chose this adult education college as it’s famous for being accessible to deaf people. I enquired about communication support for my course;

Dear Visual Arts Department,

I am interested in joining this particular course next spring. I am profoundly deaf and lipread. and I have a query regarding communication support. Which would be more appropriate for this course’s teaching style, a palantypist, lip speaker or notetaker? I have a palantypist already available to me and will be able to bring her.

I look forward to hearing from you. My palantypist tried to phone you but she just keeps getting voice mail.

Regards, Prospective Student

They replied;

Hello Prospective Student,

Thank you for your email. This course will include classroom lectures, discussions, group work and possible outdoor practical work. From my understanding of the available support you have described, a lip speaker may be the most suitable. I would suggest that you contact our Access to Learning team to discuss any support City Lit may be able to offer. Their contact details are on our website.

Kind regards, Visual Arts Dept.

Fair dinkums. I emailed the Access to Learning Team;

Dear Access to Learning Team,

Please see emails below. I have a palantypist already booked so the easiest thing would be to bring her along, and then I wouldn’t incur cancellation fees. She will need a power socket and table or desk to put her laptop on.

I would not be happy using a lip speaker full time (as suggested by Visual Arts Dept) as this is too tiring for me – you would also need to book 2 lip speakers as they would alternate every 15 minutes to give each other a break (however I get no break!).

For outdoor work (and possibly group work) I can use a lip speaker for short periods of time – which also means only needing to book one lip speaker plus it’s cheaper. I usually use Mrs X (a level 3 lip speaker) however she needs to be booked ASAP as she gets booked up very quickly and lip speakers are extremely hard to get hold of. A palantypist can cope with group work depending on how it is set up – she needs to be able to hear others so a breakout room is better than a corner of a room with other groups in it, and if we are sitting in a group rather than moving around, then that is easier for her too.

Regards, Prospective Student

No reply. I emailed them again. Six days after my first email, they replied;

Hi Prospective Student,

Thanks for your e-mail. We use our own in house support service to provide support for learners and wouldn’t normally be happy with students bringing in their own support. All students need to have an assessment of their support needs which takes into account the most appropriate support for that course.

Please contact our Deaf and Disabled support service (DDS) to arrange an assessment.

Kind regards, Learning Support Team

*bangs head on desk*

Bloody morons!

What happened to a deaf person’s choice of communication support? Especially when I’m not asking them to pay anyway! I wonder what level or qualification the in-house support workers hold? There isn’t a level higher then Level 3 for lip speakers, and my palantypist is registered and qualified. There are only 25 palantypists in the UK so I know I am extremely lucky to have one at all, and they want me to cancel her and try to get another one?!!

I wrote back, copying in DDS;

Dear Learning Support,

As I already know exactly what I need and I already have support booked, I don’t see how canceling it (and incurring extra costs) and booking other (possibly inappropriate) support would enhance my learning experience.

Please note I cannot sign and therefore do not require a sign language interpreter. I require a lip speaker and palantypist which is already in place. I am more than happy to come down to the City Lit and speak to you morons someone about this. Arranging an assessment would take too long and cost me extra in cancellation fees if I am asked to cancel and re-book the same support that I already have in the first place.

Regards, Angry Student

*bangs head on desk again*





Flying Fridays

17 04 2009

It’s Friday evening and everyone heads to the pub. One of the popular haunts of my work colleagues is the cafe at RADA (Royal Academy of Dramatic Art). Everyone wants to chill and let off steam after a busy week. So they head out for a nice relaxed evening. For me, it means more concentrating, more work as I have to lip read and try to understand what’s being said. It’s very tiring and no fun at all at 5pm on a Friday. I’d rather be in a hot air balloon and soar off into the sky with a bottle of plonk and a couple of people to talk to – hey it’s QUIET up there!

The problem at places like RADA is that there are too many hard surfaces – walls, tables, floors, ceiling – which bounce sounds off surfaces. There is too much background noise echoing off these surfaces – people talking, plates, cutlery, glasses, chairs scraping, coffee machine – and the resulting noise is very loud, it’s actually almost unbearable at times. When you’re tired, this is harder to cope with. Hearing people forget that by 5pm, a deaf person is going to be shattered from concentrating on communicating with hearing people all day (unless they work in finance, hiding behind a computer).

The solution?
1) Turn off hearing aids and rely totally on lip reading. Do-able if speaker is clear (not usually!) and I’m not too tired (meaning I can’t keep this up for very long).
2) Find somewhere outside to drink as it’s quieter.
3) Pick a clear speaker to talk to.
4) Make it a very short drink and concentrate very hard on lip reading, ask people to slow down, then vamoose.
5) As a last resort, do the deaf nod. I used to say yes to everything but that got me into a few scrapes! I think a lot of deaf people do this.
6) Meet up with a bunch of deaf people instead. They totally get good communication.
7) Go home. Have a bottle glass of wine. Chill. Properly.





Conference: Communication in the Information Age

16 04 2009

EFHOH Congress, London 2009

This year the European Federation of Hard of Hearing People (EFHOH) is holding its’ annual conference in the UK and its’ theme is Communication in the Information Age. The event will focus on opportunities to achieve equality in communication services and will look at the political effort necessary to bring about better communications networks. They will also look ahead to see what technologies may be empowering deaf and hard of hearing people in the future.

RNID members, and their friends, are invited to come to the events conference on Saturday 25th April. It will be held at the Park Crescent Conference Centre, the nearest tubes are Great Portland Street or Regent’s Park, admission is free to RNID members and just £10 for non-members.

To register for the event
Please go to Communication in the Information Age Conference 2009 and complete the online form. Alternatively ring 020 7296 8280 (voice) or 020 7608 0511(text) to speak with one of the RNID team who will register you for the conference.