One Day In Our Lives.

Having stepped into our lives for one day, you will remember how scared you were crossing the road and how hard it was to use an entry doorbell system. But most of all what it was like to be deaf and how it felt; frustrated, exhausted and withdrawn all by having to focus on people’s lips and being extra cautious of everyone and everything around us. In just one day you saw how attitudes changed around you and perhaps how people judged a book by its cover.

“Going deaf for the day was one of the most insightful yet exhausting days of my life.” – John Barrowman.

We thank you for choosing to spend one day in our lives. For some people, one day has been known to be too distressing. For others, a whole new world opened up which left them more mindful and considerate of our various needs and abilities. Kudos to you for dedicating a day in your life in order to understand what it may be like to be deaf.

However – you knew that was coming right?

Eloise mentioned, “On the one hand, good to spread awareness, but on the other not a true representation of it at all. These people have a ‘simulation’ of a mild-moderate (conductive) hearing loss. Now try adding tinnitus, distortion, balance issues, fluctuations on hearing, hyperacusis to certain sounds, and more to that. It would be nice to give them a REAL taste of what it’s like – for say, a week – with all the added complications and various other things added on top. With being deaf, there is no guessing what’s round the corner sometimes!

Also the people who do this are going from a completely hearing perspective, knowing their ‘condition’ is only temporary. Okay, this might help to simulate someone with a sudden CONDUCTIVE loss but not a sensorineural one, and no more than moderate. They won’t have built up coping mechanisms so they’re more likely to feel angry and aggrieved at things we are generally used to, and not angry at longer-term effects or experiences we have as deafies. The ‘problem’ in this is that hearing loss isn’t very simple – every person has a different experience of it. So John Barrowman still has the ability to talk to people verbally, but will never experience the communication barriers of someone who solely uses BSL.

But as I say, equally, it’s a very interesting thing to do. It gives them SOME insight into what we deal with. It’s pretty much impossible to simulate a sensorineural loss for someone who has perfect hearing – so why not go 2nd best and simply block up their ears? It’s the easiest solution for a complicated task. I have a fab ‘party trick’ that I do when I’m teaching schoolchildren about hearing loss when I do talks. I get them all to put plastic cups over their ears and all talk at the same time. The noise generated by say, 50 voices, is distorted by the cups and background noise is emphasised. Most of the time the children can’t understand what the child next to them is saying. And that’s teaching them why deaf people struggle with background noise.”

My GP once told me that everyone can lip read – at least 25% of us, hearing and deaf, can without realising it. But it does not happen “just like that” as Tommy Cooper would say. It is a brave thing to do to be part of that ripple effect in raising awareness however it is done, I am more concerned about those who feel the salt rub in that little bit more because I used to work as a care assistant – my clients never liked seeing someone get in a wheelchair to see what it was like only for them to get up and walk away afterwards. While it is useful for some people, it balances out for others.

Eloise added “Lip-reading’s not really that easy – we all do lip-read (deaf or hearing) but obviously we have to really rely on it more. When I was younger (maybe about 9 or 10 – still in brownies) I took part in a disability awareness week. This was my pre-hearing aid days. I went in a wheelchair for a few hours around town with some friends and the leaders at Brownies. That experience has always stayed with me because people stared, pitied etc. But that’s me, as a ‘walking person’ who only did that for a short time. I didn’t REALLY experience the day-to-day struggles. I didn’t have to think too hard about accessibility or getting home somehow. Or about having to get myself in to bed etc.”

A few people shared a similar concern that videos of this nature would suggest everyone suffers from the same relative effects and we all need a dog as John Barrowman is Hearing Dogs‘ celebrity ambassador for 2014. This to some would smack of being a publicity stunt and a ploy to advertise but if it helps to raise awareness at the same time then why not? Any publicity is good publicity. Just we ask, as mainstream as possible.

Helen expressed her opinion by saying “I think it would be a better impact if they get the ear plugs AND be in a foreign language environment then they would be struggling with sound AND communication issues for a week. John Barrowman in a Japanese or Spanish city for a week would be more interesting – to see how he deals with the daily life e.g. shopping, travelling locally etc.”

Hear hear! (Pardon the pun) as we all agreed this would really give someone a truer insight.

While Andrew reminded us this is… “You may have heard of the Medical Model and the Social Model? Well this is medical model. The idea that giving people a dog will cure the deafness. In just one day they can’t really cover the social side to any degree, so this is medical model. I don’t think it is a great idea to favour one or the other model. Most of us benefit from gadgets like hearing aids and flashing doorbells. Straight medical model. But the effect on our lives is mostly social, it’s about people’s perceptions of deafness (“I’m only deaf, not daft”) and how people won’t employ us because they think we can’t cope. That’s 100% social. So to describe deafness in those terms you can say that everyone falls along the spectrum of medical/social mix to some degree. That’s why I think some people are wrong in running down the medical model. It has its place in the grand scheme of things but there’s much more to us. We’re not that simple.”

Isabelle contributed “I don’t see it as someone “doing things on our behalf”, but I see it as a hearing person trying to get a glimpse of what it might be like to live a normal life in our society without hearing, or with less than perfect hearing. Perhaps we should all consider things like that. I sometimes go around my house closing my eyes and trying to do things without seeing, so that I can get a tiny idea of what it’s like for my cousin who is blind, or for other blind people. I believe that, whilst it’s perhaps not the best way to raise deaf awareness, or promote the ABILITY of deaf people, it’s a positive thing to see a famous person on TV trying to see things from the perspective of a person with a disability (or if one doesn’t want to think about deafness as a disability, trying to see things from the perspective of someone who has a hearing loss). I think we have to be careful not to over-criticise such attempts, because it may be counter-productive. Perhaps we need to take a more pro-active role ourselves, rather than except others to come and ask us to come up with ideas?”

As Angel remarked because she “actually began to appreciate the different levels of accepting what John Barrowman and previously Pam St Clement and Tim Vincent is really down to who you are and how you view your deafness and when you became deaf. I am fine with what they are doing purely because they are showing other hearing people this is a worthy cause and touching on a subject that is; well, as they keep saying invisible!!! Maybe stepping back and considering the various ways that hearing loss is represented from mild right down to totally deaf will put the exercise into perspective. I believe we will all view this with our own experiences of hearing loss and how we have dealt with it and what life has dealt. For that I respect we are not all going to agree however I will support anything that helps to raise awareness in any small form and of course raise money for a worthy cause.”

On top of all that, it is always best to put across a balanced and informed deposition as it is all educational and part of the ripple effect in helping to raise deaf awareness. Thank you to those, who have dedicated just two minutes, half an hour or a day to step into our lives as best as it could have been constructed just to understand our medical model as it is in our predicament and how best to adapt to our needs. When it touches a soul so much so that they want to be a part of that change for the better – herein lies true insight and passion.

One day in our shoes will at least contribute in making the world a better place, for you and for us as it is all educational and a part of the ripple effect – please don’t take anything for granted or forget that we have to live the rest of our lives with this deafness albeit with both the social and medical models.

Thank you for your time and patience.

~ SJ (Sara Jae)

(To read John Barrowman’s diary “Deaf for the Day” – click here.)

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