Barnet

7

How are things in Barnet ? This post is not about how things are in Barnet , but it is about my communication . I am writing it for everyone’s interest and for your use , if you speak with me .

The Repeating Phrase – the Delete key is next to the Speak key on my computer , and I often hit Speak when I mean Delete . Andy , who lives in Barnet , told me how things are there . Five minutes later , he got the same question and said things were as before . We laughed , but sometimes the repeated phrase causes annoyance for the listener and frustration for me . It provokes reactions like ‘Didn’t you listen to my answer?’ or ‘I am not stupid , I heard you first time.’ Sometimes the phrase repeats five times , and now you know why.

The Phrase For Someone Else – when I am having a conversation , I write down my next phrase with my eyes and it is visible on the screen . Carers , nurses , friends and family look at the screen , often because I don’t want to use the spoken voice or because they are in the room . You can imagine the potential for misunderstandings and privacy breaches .

Expressing Yourself – even for fast users of eye gaze , getting your message across is totally different compared to normal speech . For visitors or longer subjects , I prepare in advance . During conversation , I am slow , can’t vary voice volume or tone and have limited body language . I make facial expressions , though my mouth muscles have wasted . I leave many conversations feeling not heard or misunderstood .

Speed Of Conversation – linked to the previous point , but needs a separate one . You won’t notice , but we talk and respond quickly , such that by the time I am ready to Speak my answer , there have been one or two more questions . My words are out of context . By now , you will have realised that it’s not easy being the speaking partner either . Banter , irony and switching languages in less than a minute are impossible . Conversation slowly works well . The biggest loss is good communication with Valentina and Sebastian .

Stress And Fatigue – I am writing this at a good speed , but there are times when I can’t make contact with any key . People wonder what is happening , I get frustrated . It often occurs when I need to say something important .

Clarifications – I try and be accurate to avoid the need to clarify , but balance the accuracy with brevity . Sometimes the gamble pays off .

Bright Light – the eye gaze doesn’t work with glare , but not everyone knows this and so can’t understand why I am not talking . I can’t tell them the reason for my silence of course . To speak I need to move , often to the position where they are . I just start moving and hope that they are not offended as the 200KG wheelchair advances towards their toes .

The Question In The Negative – Here are a couple of questions , but the answers are not obvious . ‘Are you not feeling well?’ and ‘Do you not want to have this?’ Take the first question . The answers can be ‘ Yes , I am not feeling well ‘ , ‘No , I am not feeling well ‘ or ‘ I am well’. Negative questions always cause confusion , especially when I am answering with nods or headshakes.

Or Questions – these questions are a nightmare . How do I answer ‘Would you like to eat chicken curry or fish ?’ When I am answering with nods or headshakes , I just look at the person asking and wait until they give me one option . By default , the second option will be clear depending on the answer to the first option .

Sunglasses – the eye gaze doesn’t work with them , but not everyone knows this . This can cause frustration .

 

Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

2 thoughts to “Barnet”

  1. This is so moving …..my brother did not have eye gaze …he could still use his hands and used his keyboard ….for his voice …..so many people asked a question and then moved on before he could reply ….he got so angry …..people came to visit him and ended up talking between themselves ….they just did not have the patience to wait so he could be included in a discussion ….so frustrating for him …and me ……X

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