It's All Happening in Queensland

I simply couldn’t measure up as a “hearing” person. 30 years of butting my head against a brick wall in the mistaken belief that I could be a “hearing” person (when I was profoundly Deaf)!

This is all so obviously wrong that I am somewhat ashamed of myself for letting this happen.

MICHAEL LOCKREY

This is one of the most profound statements that I have ever read about a deaf person and how they feel in the hearing world.  More so because I know the man. You could almost call Michael Lockrey a poster boy. He is profoundly deaf, intelligent, successful, articulate, speaks with clarity – He is everything the auditory verbal professional wants from a deaf person. He is a shining beacon of what the approach can achieve. AND YET .. he himself acknowledges that for all of the the success that the auditory verbal approach had in developing his speech and language – It wasn’t enough.  For all the efforts of the system to make Michael “hearing” the reality hit him, well into adulthood – that he is deaf, and speech alone could not provide him with the communication  he needed to achieve his full potential – socially and professionally.

So it is with some trepidation that I read today that the Queensland Government has put in its state budget money to ensure that every Queensland kid who loses their hearing or is born deaf can be provided with a cochlear implant. Now I am not one of those anti-cochlear implant people. I fully support the right for parents to chose the implant for their kids. Parents do not make the decision lightly – they make it with much love and with only their child’s best interest at heart.

I wish, however, that they could make this decision with all of the information they need at their finger tips. I wish that they could understand that using sign language will not impede speech and language development but actually enhance it. I wish that they could access the research that shows just how speech and signing complement each other and not the opposite as many cochlear implant advocates will have us believe. BUT I know that this is not likely to be so.

The reality is that they are likely to receive highly biased information. Information that raises their hopes. Information that suggests that the cochlear implant will NORMALISE their child and make them as close to hearing as is possible in today’s technologically enhanced world.

But as Michael Lockrey can attest – when they hit adulthood the reality will set in. After years of being praised for being able to HEAR so well, after years of having people gush and be amazed at what the cochlear implant has done for them, after years of believing that they are hearing they will learn that they are,  in fact, deaf. They will realise in big groups, in social situations, in work training situations or in noisy environments that they are DEAF.

For some the reality will hit home that they have been living a lie. And like with Michael Lockrey, this realisation will hurt. There will be anger and possibly shame. For some, like Michael, they will get past this and live happy and fulfilling lives. But it is painful. Some get past it but too many do not.

In adulthood they may even find that the technology that has been their godsend will breakdown. Like hearing aids cochlear implant processors have a life-span. After the age of 21 they will have to pay for repairs and replacements themselves. Somehow, to be “hearing” againthey will have to find many thousands of dollars to replace the technology that they have become so reliant on.  Some will be able to afford it but many will not. All those years of training to  be able to use the cochlear implant may suddenly be for nothing. Suddenly one day they will be DEAF .. And then what?

Recently Greg Leigh from the Royal Institute  for the Deaf and the Blind gave the Libby Harricks Memorial Orientation at the Deafness Forum Summit in Sydney. He rolled out statistics that showed how kids with cochlear implants perform better in language tests, speech tests and so on. All of this is true. I would be lying if I did not admit that I had not met kids with cochlear implants that are doing fantastically well. But Mr Leigh’s research had one flaw – It did not have any data, as far as I could see, that compared results of kids who have had cochlear implants and who had been also given access to sign language. It didn’t provide any longitudinal information of the difficulties that  kids with cochlear implants confront in adulthood. It didn’t talk about how they perform in big groups, in noisy environments nor did it discuss issues of self perception of kids with cochlear implants. Mr Leigh did talk of the benefits of signing BUT not as part of the cochlear implant process. It seemed that it was either one or the other,  there was no suggestion that the two methodologies could be combined.

You see, life as a deaf person is not just about speech and language – it is about many other social and environmental factors. Its about a the WHOLE PERSON. The WHOLE PERSON is something that the cochlear implant advocates have not yet understood. In fact I doubt it is something they even really consider. Their obsession with speech and hearing blinds them to these issues.

Queensland is an enigma. Not too long ago it committed $30 million over 5 years to introduce Auslan to schools. It has now introduced a program that aims to see every kid with a hearing loss provided, where possible, with a cochlear implant. It clearly recognises deafness, particularly with kids, as a vital and important state issue. For this they are to be congratulated.

But now the challenge is to roll out the cochlear implant program in a way that parents can see the WHOLE deaf person and not just hearing and speech. The challenge is to provide parents with the REAL story. They may well still do this – I will watch the developments with interest.

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4 thoughts on “It's All Happening in Queensland

  1. I love the Rebuttal. I have subscribed since the confirmation of my son’s deafness. As a hearing parent, I actively seek out any and all information I can about D/deafness. I am laso a hearing parent who chose cochlear implants for my child. However, I have also learned to signed, and am giving my son as much of that as I possibly can, also.

    When he was born, and “failed” two SWISH (State Wide Infant Screening – Hearing) tests, then confirmed by an audiologist from Australian Hearing, we were sent on a very narrow path.

    Perhaps it was my lack of awareness regarding the Deaf that I didn’t know how to seek out their help. But the big sticking point for me was that there was NOTHING from the Deaf community, or their advocates, to approach me, as a parent of a newborn Deaf child.

    After the confirmation of his Deafness, I was sent with my son to Australian Hearing for him to be fitted with hearing aids. No-one ever asked me did I want to learn to sign. Once hearing aids were fitted, it was suggested we see the Shepherd Centre. And so I went. I thought it bizarre that they should NOT support signing to a Deaf child. After all, everything I had read whilst pregnant had suggested signing to infants pre-verbal can assist with communication and reduce frustrations. I was always going to sign to my baby !

    It went against my gut instincts, but I followed their vehement belief that signing would hinder my son’s progress…and again, where was the presence of ANYONE from the Deaf community to reassure me that if my child signed, his communication would be enhanced, not hindered ? Where was the presence of someone from the Deaf community to show me that Deaf (and I use capital “D” purposely) people CAN live in this ignorant hearing world they must endure, AND be happy AND successful ?

    As a first time mother with a brand new baby, premature by 2 months, with colic and a naso-gastric tube, poor lactation, a husband due to work commitments, living away from family and friends, it would have been a relief for someone from the Deaf community to seek me out, rather than let me be lead, sleep-deprived, down that very hearing path.

    • Indeed there is much to dislike about the system. I have written of this before. Priorities are wrong the big picture has been lost. There are two things that bug me. Australia Hearing know where the Deaf community is. Hospitals know where the Deaf community is. The Shepherd Centre know where the Deaf community is. I know for a fact having worked as a case manager for Deaf Children Australia, (then VSDC), that we are constantly saying .. we are here, we have something to offer, we want to ensure full and unbiased information. Rarely are the services tapped into – the biase and reluctance to work together is just appalling.

      It saddens me sometimes. Sometimes it is well meaning people that have decided that they want to save the world. They want to create an organisation that will cater for everyone. They have five and ten year plans. Unfortunately these kids dont have five or ten years. They need it now. While boss ex is on an 8 week overseas trip to RESEARCH, Carly – 100 km from the city centre cant even get a case manager to their home. Parent Z in the South East is so disillusioned that someone can not come out and work with her school she asks me in desperation to be her advocate. It should not be this way .. that 40 grand the boss is spending to be overseas to learn something he already knows could be better spent here.

      Yes its a shocker. It doesnt need to be that way. I am sorry it was for you. ONE DAY .. hopefully …But these kids and parents need it NOW!

  2. Have you seen this medical report before?

    The group of “brain” medical people study to test the efficiency of cochlear implants in transmitting auditory information to the brain in 10 profoundly deaf subjects.

    Five were postlingually deaf and five were prelingually deaf.

    Conclusion:

    The postlingually deaf subjects had a greater increase of rCBF in the Broca’s and Wernicke’s areas and better sentence comprehension than the prelingually deaf subjects.

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