2 COMMUNICATION MATTERSVOL 23 NO 1 APRIL 2009

My Communication Story

KATE NORTONwww.livingwithataxia.org/profile/Kati

Kate keeps a regular blog at: www.livingwithataxia.org/profiles/blog/list?user=2nly9cw0x9lp5

The last seven years have taught me alot about people, not just others but alsomyself and my ability to cope with what-ever life throws at me.

Although I had a slow start and disabilitiesas a young baby/child (due to having beenborn with my thyroid not working at allwhich was not found out until I was nearlytwo, and epilepsy), I went to a regular pri-mary school and I remember hearing,being physically able to run about and ridebikes with friends and so on. I could speakand hear, and learnt to communicatepretty much the same way as most peo-ple. I know I owe my experience of a‘normal childhood’ to my parents whowere very dedicated and determined.

When I lost my hearing at 16, it seemedlike I had moved to a parallel universe!Words, even if I could hear them with hear-

ing aids in, made little sense. They werejust a serious of sounds and it was liketrying to decipher a foreign language un-less someone provided you with thewords to read so you knew what they hadjust said.

Visiting the doctor, bank or anywhere withthose glass panels at the reception be-came somewhat similar to visiting anaquarium as the lips moved silently upand down on the other side of the glass,doing fish impressions! Which, althoughquite amusing at times, was also frustrat-ing so I soon learnt to carry a paper andpen with me, to ask others to write downwhat they had said.

My own speech was still clear at this stage.Other people had no problems under-standing me, and often didn’t realise atfirst that I was deaf. But by the end of myfirst year of mainstream local college Iwas struggling to keep up in classes, andwith no knowledge of how to lip-read orcompensate I was soon miles behind.

My parents decided I would be better go-ing to a college for the deaf to learn tolip-read otherwise I was never going to beable to hold down a job if I couldn’t com-municate with ‘the rest of the world’. Ithink it was a hard decision for them af-ter fighting to keep me out of specialschools so far, but I am glad I was allowedto go. I went to Doncaster College for theDeaf whose philosophy was ‘Total Com-

munication’, i.e. using all available meth-ods to make sense of the world andcommunicate with others, for exampleyou were encouraged to use any residualhearing you had left, as well as develop-ing lip-reading skills and using signs toassist learning.

I learnt a lot from other kids who had beendeaf all their life, and I adapted quitequickly. I was fluent in sign by the end ofthe first term (it was residential so I wasexposed to signing all day every day) andalthough lip-reading took longer to mas-ter I was quite good by the time I left andable to follow most people. The other deafkids taught me other compensation strat-egies and I learnt to be aware of drafts,vibrations, reflections off any reflectivesurface and anything that might signifysomeone else was behind you or some-thing else was happening based on otherpeoples body language and where theywere looking, etc.

I found I could lip-read some people moreeasily than others; some just naturallyhave better lip patterns that are easier towork out. I also discovered that lip-read-ing is a bit of a misnomer, as you aren’tjust reading lips. You have to learn to putvisual clues together like a jigsaw: facialexpressions, body language and the con-text of what you are talking about alsoplays a big part. Some words look identi-cal on all lips, for example job, shop, chop.

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In this situation you just have to guessfrom the context which word is the mostlikely.

Rather than pure BSL (British Sign Lan-guage) which has a completely differentgrammatical structure to English, at Col-lege I used Sign Supported English (SSE).For example “What is your name?” in SSEwould be signed in the same order as spo-ken English (subject, verb, object)whereas in BSL it is topic, comment -‘Name you what?’ emphasizing the coreof what you are talking about. BSL is a veryvisual language and for that reason is dif-ficult to follow at first, after having beenused to English grammar all your life.

The SSE gave me the vocabulary of signsthat I needed and I also learned BSL frommy roommate who was deaf-born and anative BSL signer, which was very usefulfor later accessing University, somethingI wouldn’t have been able to achieve with-out an interpreter.

It certainly kept your brain sharp if youconsider the speed lecturers usuallyspeak; the interpreter had to translate thatinto BSL (quicker than SSE) and sign it tome, I then had to translate it back again inmy head.

My situation seemed to bring out the bestor worst in some people. Some peoplewere just shy but curious, and others wereplain ignorant! Their body language toldme which was which. One lecturer wouldpraise the interpreter, and she would haveto explain she was just translating my an-swer. Another lecturer asked if he mustput up with ‘this charade’, and a complainthad to be made about his attitude.

I never really considered how importanteverything I had learnt at Doncaster Col-lege was, until I had a job working withadults with severe learning disabilities. Inthe group I was in most of them were non-verbal - they all had different ways ofcommunicating, and with one person (shehad autism) you had to guess what shewanted or what was wrong as she hadnever spoken and wouldn’t even point tothings. It made me aware of how totallydependent they were on someone else’sinterpretation of what they wanted orneeded. They relied on someone know-ing them well, which profoundly restrictedtheir ability to communicate with theworld. My heart went out to them - it washard enough just being deaf, I couldn’timagine what their world was like.

My world involved a lot of guesswork andpiecing together bits of information towork out what was happening or beingsaid. Some days were quite exhausting - Inever had problems sleeping! It was niceto relax in the company of other signerswhen communication was much easier.

At this time my circle of friends weremainly all deaf with a few hearing studentswho were interested in sign and hung outwith us because they wanted to learn.

Coming back home and finding work withnew people to learn to lip-read again wasa new challenge, but I was quite an expe-rienced lip-reader and my speech wasstill understandable to others.

This lasted until my early thirties when Isuddenly started experiencing sight prob-lems. These were the first signs that mythyroid wasn’t working as it should (al-though undiagnosed at the time) butluckily the sight wore off again after fourmonths.

Those four months really shook my con-fidence in communicating and gettingabout, as having been deaf since 16 I re-lied on my eyes totally.

My vision went in and out, subtitles weredifficult to read on TV and lip-reading wasdifficult - I’d get bits, then the rest wouldbe blurred. It was like someone playingwith the buttons on a zoom lens andthings going in and out of focus.

I started learning Braille but to my greatrelief the visual symptoms went away af-ter a few months.

But I was getting stiffer in my back andlegs and by the following February (2003)I woke up barely able to move I rang mybrother who took me to doctors. I wasadmitted to Neuro ward for further test-ing for MS, MND, etc.

Hospital is awful at best of times, butwhen you are in a ward full of people youcan’t understand, and then nurses com-ing - flapping their lips at you then stickinga needle in you or something withouteven checking I understood what theysaid they were doing - it wasn’t much fun!The TV didn’t have subtitles and it wasvery boring. I managed to stick it out untilafter the MRI then discharged myself asit was Friday and I didn’t want to be stuckin there all weekend doing nothing.

By June I needed a walking stick (age 33)and was using a mobility scooter to walkmy dog Inca. Getting through the day wasexhausting so I didn’t go anywhere otherthan taking Inca out.

They eventually found my T3 levels weredangerously low. Basically your thyroid(when it works) produces a hormonecalled thyroxine that the experts call T4then your body converts it to T3 to feedyour cells/organs, etc. make everythingwork. If your Thyroid levels are too lowyour Thyroid Stimulating Hormone (TSH)will send messages to say you need tomake more. As my thyroid has neverworked from birth it couldn’t respond tothese messages so my TSH levels were

getting higher and higher whilst my T3 lev-els were dropping in spite of the thyroxinedrug I took.

I was struggling with my speech by thisstage but was told once they sorted mythyroid levels out my symptoms would goaway. Some symptoms went, like the ex-hausting fatigue and constant pins andneedles but the Ataxia symptoms stayedand then started progressing despite get-ting thyroid levels back to normal again.

Having successfully adapted to beingdeaf, when I later had to start using a wheel-chair, I told myself, ‘it can’t be that hard,just get on with it!’

I met a few people who were paraplegicwheelchair users, who taught me a lot. Iwas reassured that they still lived inde-pendently, so I could too – I just needed afew adaptations. After getting a mobilityscooter I was soon managing the dog walk-ing and shopping myself again.

About a year after moving into an adaptedproperty I started noticing other difficul-ties; my bladder was always playing up andI was clumsy with my hands, knockingplates off worktop, etc. Also, people Ididn’t know seemed to be having moredifficulty making out what I was saying, andI seem to get more tired just from trying tospeak - especially long explanations.

Typing was getting frustrating, as I’d hitthe wrong key and sometimes the samekey several times. This was a problem fortext phone use.

I searched on the Internet for a solutionfor me to be able to type as fast as I usedto, which was a futile and impossible mis-sion really considering I was trained inBusiness Studies and touch typing andused to type over 200 words per minute! Iswitched to an iMac computer with Key-strokes, (assistive software that providesword prediction, abbreviation-expansionand on-screen keyboards etc) and a spe-cial joystick so I could move cursor asfast as I used to be able to use a mouse.

I developed an intensive exercise routineto try to stop the ataxia progressing. Insome respects this has worked, but onthe other hand it hasn’t stopped my armsfrom getting more ‘jerky’ movements tothem, (though I guess it might have beenworse if I wasn’t doing as many hand-eyeco-ordination exercises everyday). I’mstarting to reach stage where I am usingwrist weights to steady hands so I canchop vegetables safely without taking myfingers off and they are useful for keep-ing arm steady when I need to iron or wantto paint or draw. They are tiring to wear forlong periods though. I have mastered theart of controlling an electric wheelchairwithout needing fingers and fine motorco-ordination, using a big sponge ball on

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top of joystick then using the underneathof my forearm rested on top of it.

Now I seem to have reached a stage whereI have accepted that no amount of spe-cial software/equipment is going to allowme to move as quickly or fluently as Icould naturally, before I had ataxia, and Ihave had to learn to be more patient withmyself and less of a perfectionist.

From walking normally to needing wheel-chair most of time took under 18 monthsand my speech started going downhillshortly afterwards.

It was around the time my speech wasbecoming unintelligible to new people. Iwent to a council meeting with my socialworker. It was about improving the livesof people with disabilities in my area. Alot of other deaf people were there tooand there were several interpreters.

We had to split into groups to ‘brainstorm’.Luckily my group was all deaf people andwe had one of the interpreters. This wasthe first time I became aware that theataxia was also affecting my signing abil-ity, as the interpreter seemed to havedifficulty working out what I was signing. Icould see that his lips weren’t matchingmy signs when he was translating.

Using my voice didn’t give him much ex-tra help either, though he got it in the endas one of the other deaf people helped. Iwas thinking “but I just signed that, whydidn’t he understand it when I said it?”

I left there feeling frustrated and wonder-ing how I was going to manage if I couldn’tmake people understand me with eithermy voice OR signing. What kind of futurewas I going to have and what quality of life?(I didn’t know at that time that I was going toget funding for a communication aid).

It made me think again of the people Iused to work with at the day centre whowere dependent on staff’s interpretationof what they thought the person wantedor needed.

Last week I finally received my LightWriter40 communication aid and I can’t believethe feeling of confidence it gave back tome, even though I only used it locally inmy sheltered complex. I think it was justknowing that if someone couldn’t workout what I was saying I could type it onLightWriter. I used a combination of typingand signing with a lady who could sign buthad never met me before so I suspect washaving some difficulty working out whatsome of my signs were meant to be.

I think of the deaf school philosophy of‘Total Communication’ and I can’t thinkof a better example than the multiple sys-tems I have in place to make sense of theworld around me (lip-reading, body lan-guage, signing) and my own developingway of communicating with others (signs,

sounds – when I can get any out,LightWriter, pointing).

Combined together these make an effec-tive example of a ‘Total Communication’package and highlight the importance wayin which different systems work best indifferent settings and there’s no reasonwhy they can’t be combined together tocreate one highly effective communica-tion system.

It has all been a steep learning curve anda long journey so far but as I reach my40th birthday this summer, seven yearsafter the ataxia started, and although ithas progressed quite quickly comparedto most, I am still managing to live inde-pendently. I think I wouldn’t have managedthis without the Internet and the ability tocommunicate with people of all differentlevels of ability all around the world.

You Tube has been helpful as there aremany videos of people attempting todress themselves and do other tasks withlimited hand function, which has givenme ideas of how I can manage things nowand in future as things progress. I love mygadgets and already know which ones Ineed to get for further down the line.Some of them can be a great help how-ever simple the idea behind them, andcan sometimes be used to help in otherways than the original task they were in-tended for. For example, I also use mygrabber - originally designed for pickingthings up off floor, for opening the cur-tains and for operating the ‘twiddlingstick’ on kitchen blinds (to open and closethem).

And last, but by no means least, I love myfaithful little friend and companionthrough this journey – my ‘little girl’ Inca.She has been my ears when I needed herto be, my hands, my motivation to get upevery day, who willingly learns every newtask I teach her, without complaint so thatI can stay independent for as long as pos-sible. I definitely wouldn’t have got thisfar without her.

Kate Norton

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ABOUT 1VOICE

Many children and adults haveplenty to say, but are unable tocontrol their mouth muscles tospeak clearly. They can use aidssuch as pictures, written wordsand technology to communicate.

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Communicatingtogether