Tamsin Coates: Trying to communicate in the dark for my sons’ night vision tests

Posted on May 13, 2014

Recently, I took my eldest son to an appointment and faced my ‘nemesis’ – the night vision eye tests. I first faced this experience about ten years ago when the boys were both small, Campbell a baby and Cameron a toddler.

At the time, both relied completely on sign language to understand the world around them, but even the signs they knew could not make these small people of mine understand what the ophthalmologists wanted them to do.

It didn’t help of course that to get them used to the dark and truly show their night vision abilities we had to sit in the dark for 15 minutes to get their eyes accustomed to the dark before the testing could begin, with communication between me and my babies being impossible at this point as they couldn’t see my face to read my facial expression or see my hands signing to them.

It is a memory which has stayed with me as my gold standard of ‘comedy moments’ where I could only laugh upon leaving the clinic at the absurdity of the situation or I would have cried and not been able to stop.

I approached this more recent appointment with a bit more optimism. I now had a teenager who I could prepare to some degree for the appointment and I am a far more confident parent with a vision toward empowering my son to be as independent in appointments as possible. This repeat of previous tests could go well. Note the optimism…..it isn’t going to last long!

Walking into the clinic room I quietly spoke to the ophthalmologist and asked her to make sure if she needed to give Cameron instructions that she do so before she turned the lights off to ensure he could lip read what he was required to do to complete the tests.

She duly nodded and started to attach electrodes to his head. Following this process she placed an eye patch over his left eye, turned the lights to the half gloom which is the first stage of the test and then proceeded to try and tell Cameron what he would need to do.

Groaning internally from my position in the far corner of the room, sitting to the side to give my son some degree of independence, I realised that despite my comments the lady hadn’t understood why I had made my request only minutes previously.

We navigated this first hurdle and then she realised that she needed to remove Cameron’s implant and hearing aid as they were disrupting the signal to the electrodes and the computer. It was at this point I started to feel the familiar burn of anger. Not at this lady in particular but to the situation in general.

Throughout our appointment the lady slowly realised that she needed to work out a system using me as a signer to communicate with Cameron, including a tapping system to count out seconds between flashes on his shoulder when we were in complete darkness however what nagged at me was the recent reaction to the outcry over the lady who had to give birth without an interpreter.

I had read Charlie Swinbourne’s article for The Guardian and then I had read the responses. I was too annoyed to formulate a reply at the time, knowing that I would be expressing in anger rather than reason which doesn’t help to engender change, but one which stuck with me was a comment that someone made about it being an entitlement society.

A place where people felt they were entitled to more but should just make do. No interpreter, just use a pen and paper! Sitting in that appointment I couldn’t help but feel my thoughts go back to that comment and the amount of ignorance displayed by the person making them.

My son has me there to interpret/communicate for him at present, but going forward to the future he may not want his mum in all his appointments with him (I welcome and dread that day in equal measure!).

We are aiming towards an independent future for him, where his communication needs can be met, not necessarily by his mum, but that can only happen when people give forethought to the clients they have using their service and an importance is placed on ensuring that all deaf people have access to interpreters to ensure their understanding of the appointment/intervention and to express their opinion as a key component. This is a necessity not a whim which deaf people are hoping people will fulfil.

Rant over, but before I close I was hoping to write an article soon about a couple of positive experiences we have had with nurses in appointments and during ward stays recently so it would be remiss of me to not include them now.

Twice recently, nurses have spoken to Cameron and have realised that he hasn’t followed what they have said. The first was a nurse who spoke to him with her back turned toward him, she realised her mistake, apologised and acknowledged that she shouldn’t have turned away when talking to him.

Then a nurse on a hospital ward asked Cameron what he would like for breakfast before realising he had no listening equipment in and she was standing in a dark corner of the cubicle where he couldn’t lip read her.

Again, she quickly realised why he hadn’t responded and started to open curtains to let in light before approaching him to alert him to her presence and speaking again when he would be able to lip read her question.

Two small incidents, but ones which gave me hope for the gradual growing of awareness in staff communicating with deaf people using health services.

Tamsin Coates trained and worked as a Speech and Language Therapist for over 10 years. Her training came in useful when she had two sons who are profoundly deaf. She now juggles being a mum to three lively children, writing (she has new book A Changing Skyline out now and you can buy her first book Meanwhile I Keep Dancing here), co-ordinating Teen Team events for the Wirral Deaf Children’s Society and raising awareness regarding deaf issues wherever she can.

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