Bridging the Communication Gap

After going deaf in my teens and having friends who were born deaf and relied on sign language I was aware for years before my speech was affected by ataxia, of the ‘communication barriers’ that existed between non-verbal and speaking people.

I was often ‘interpreter’ for my friend and people would speak to me rather than her. Been young and inexperienced at lip-reading myself at the time she would teach me tricks like going round shops looking for the assistant who looked easiest to understand. We would go armed with pen and paper just in case neither one of us could work out what they were saying and then I would translate my friends replies to the assistants.

After developing Late Onset Ataxia in my early thirties I slowly started to struggle more with speech I first noticed it about 2 years in as my first symptoms were in my standing and walking balance.

I started struggling more to get words out and would have to write things down myself just in case I couldn’t get the words out when I got there. Then my speech would go slurred, initially only when I was getting really tired but as I could still walk with a stick at the time but tended to wobble from side to side with slurred speech I could see people looking at me and wondering if I was drunk in the middle of the day, when I was just exhausted after trying to get around town for a few hours to get my shopping.

As the Ataxia went on I found it more tiring to speak for longer periods and even when I had just been out for an afternoon or evening trying to speak for several hours it would take me about 2 days to recover my full strength again and get my speech back.

Then I’d get people who would start a conversation, then realising they couldn’t understand me when I tried to reply, suddenly remember they had to rush off somewhere, which doesn’t do much for your self esteem.

I would get people to text me if they were going to visit, that way I didn’t have to answer the door if my speech was really bad and I wasn’t expecting anyone.

By this time I was also needing a wheelchair full time so access as well as communication was starting to get frustrating and going out to socialise was just too much hard work!

So last year I wrote to a website called ‘Communication Matters’ explaining my difficulties and asking if they thought I would still be able to get funding for a communication aid as I still had some speech and I could sign (but none of my neighbours can so was very isolated within my community).

They put me in touch with my local NHS guy who came to assess me. He really did struggle to understand me, some people did and other were just good guessers I think or I would later find out, had a deaf/speech impaired person in their family or worked with one or something.

After trying out a few different communication aids we decided on the Lightwriter SL40 as I could communicate the best on that. The word prediction and abbreviation-expansion system was similar to the one I already used on my iMac.

I thought at least I would now be able to communicate better with the health professionals as getting to the doctors was a problem. My local surgery like people to make appointment on same day but interpreters have to be booked 1-2 weeks in advance which means they are also very difficult to get in an emergency.

It was one such emergency during my trial period last September that I realise the importance of the role this little machine was going to play in my life if I could get the funding (I didn’t know I was going to get it at that time).

I had got up as usual and set off on my mobility scooter with my dog but my face felt strange. I looked in one of the rear view mirrors and saw my eyes were starting to swell. (I had been getting unexplained allergic reactions which we now think its because of my conditon also affecting my immune system).

As I had, had the full blown Anaphylactic shock twice in the past I rushed home as quick as I could I took some extra anti histamines hoping to slow it down and buy me some more time while I rang the doctors surgery.

I use the Typetalk Relay system which involves me dialing my doctors surgery with a prefixed code in front, an operator then joins the conversation when the call is answered. They speak what I have typed to the person I am calling then type the other persons reply back to me so I can read it on my textphone.

This means phone calls take longer but luckily this time it was not life threatening, which is just as well as the doctor wanted to know if I wanted to do the consultation over the phone or if I had an interpreter at home!

Resisting the urge to tell them sarcastically, “yes I keep one in the cupboard for emergencies!” I explained that I didn’t happen to have an interpreter present, was wheelchair user without transport to get to surgery and on my own.

Luckily for me it was the week that I had the SL40 for a trial so I was also able to reassure her we didn’t need an interpreter as I had a communication aid so she would be able to understand me.

In the time it took her to get here I was able to type out what had happened and save it as a note, telling her I had had allergic reactions before and what to etc. Fortunately as I had taken 4 anti –histamines by this time, this one proved not to be life threatening and a course of steroids was all that was needed but it certainly brought home to me the importance of been able to communicate with anyone.

I used this example in my letter to panel when I was invited to write a letter to them myself supporting my case for needing such a device.

I was thrilled to eventually receive my own Lightwriter earlier this year and as well as using it when necessary with health professionals it has also helped to give me confidence to go out to new places and meet new people.

Recently I went to a ‘1Voice’ event that was held in my local town and enjoyed meeting other communication aid users for the first time.

I have also attended council meetings in the past where there were deafened adults who couldn’t sign well enough to follow an interpreter or hear quite enough to keep up with the speaker so my Lightwriter will enable me to communicate with both groups! I think the forward facing screen is a great idea.

I have shown it to my deaf friends and although we don’t need it with each other as we all sign, they did like the design as it looks similar to a small textphone for the deaf.

Recently I met up with cousins I hadn’t seen for years and I took my Lightwriter with me, I have used it to go to an hairdressers I have never been to before whereas in past it was an home visit and a friend was here too to help with communication.

All my dogs information is also stored in my notebook as well as her insurance details etc incase of any unexpected bills or visits to vets/animal hospital.

Now I don’t have to go round a shop looking for someone who will be easiest to lip-read as they can type their reply in the event I don’t understand them and it is easy for anyone to use even if they have never seen one before.

I find abbreviation-expansion is good for quick sentences to explain the Lightwriter and why I use it and to ask people to give me time to reply.

I use the stored phrases when I have several sentences that will be the same each time and contain a keyword for example ‘account’ to use in a bank. I type in acc.. brings up acc in word predition which then brings up

‘Can I open an account please?,
‘I’d like to transfer some money into my account please’,
‘I’’d like to take money out of my account please’,
Id like to close this account’.. then I just choose the one I need that time.


I like the way one abbreviation can bring up more than one thing for example ‘lw’, brings up the word ‘lightwriter’ if I just want to add it into a sentence I’m constructing or will also bring up the sentence ‘This is a Lightwriter, it speaks what I type, as I have speech difficulties’ I could also then add to that by typing ‘tma’ (time to answer) and it comes up ‘Please be patient and give me time to answer’ ‘lpr’ quickly brings up ‘I need to see your face to lip-read’

Things like my full name and address also have abbreviations to bring up quickly. As I cant write very well now I have a tab in notebook for all the things you often get asked in forms so I can answer quickly if someone else needed to fill in a form on my behalf too.

Sometimes you just want a spontaneous chat or might need to say something you hadn’t predicted and the word prediction is very good for that. I have made entire sentences from the word prediction alone without actually pressing any letters! I have to say it is very good at predicting the possibilities of what you might say next.

I have researched several communication aids through my own group ‘More Than Words’ so know the various systems and how they work and I have to say that the new Lightwriter (SL40) is my personal favourite because of way it works and also its compactness, whilst not been so small that its difficult to use if you have motor co-ordination difficulties. I definitely think it was the right choice for me.

http://www.dailystrength.org/groups/more-than-words