The Mind Game!

dinner

 

 

With thanks to Julie Judd for the Auslan translation that she provided at no charge. We are fortunate to have one of Australia’s finest interpreters providing us with much needed assistance for the Deaf community. Thank you Julie.

The real disability of deafness is not the lack of hearing but the way it plays with your mind. My friend Adam (not his real name) reminded me of this today. Adam and I were discussing deaf issues and Adam came out with an extraordinary statement. He said that he had not really fully come to terms with his hearing loss until he was 35. Even now Adam doesn’t see himself as Deaf and he certainly doesn’t see himself as hearing. Said Adam, “In some ways it’s similar to the questions of identity I faced when moving from the UK to Australia as a 10 year old. I am neither English nor Australian, but a mixture of the two. They are both comfortably familiar, but I feel I don’t particularly belong in either place. I just happen to live here, and that’s enough. Being Hard of Hearing is like that. We are not hearing, but we are not Deaf. We do not have a strong identity like the Deaf community, but we do experience many of the same or similar issues with access.”

Adam’s story is so typical of people who are born deaf but have had a mainstreamed education. Adam lived in a rural area and was bullied at school. He did not take this lying down and sometimes saw fit to retaliate. He admits he was sometimes disruptive in class. Perhaps it was his way of trying to be a cool kid and compensate for his deafness. Adam admits that he did not start wearing his hearing aids until he was 19 years old, perhaps another sign that he was in some kind of denial about his deafness.

His mother was active in the local area. She became an interpreter even though Adam did not himself sign. She set up a local parent support group for parents of deaf kids.  Adam never attended any functions that were organised by his mother. Adam admits it was because he just wanted to be seen as normal and for him mixing with other people who were deaf was anything but normal. Perhaps he just thought he was above those deaf people, after all he had done well at school and was pretty bright. He didn’t have problems, right?

Adam got through University with minimal support. He never asked for anything extra. Later he was to suffer from clinical depression. This is interesting because there is much research that indicates that depression and anxiety are much higher among people who are deaf. A few years later, most likely to try and understand where his depression may have come from, he attended a conference that focused on deafness and mental health. He was in his thirties by this time and got involved with members of the Deaf community for the first time.

Apart from needing to request some support at work his first experience of advocating for himself was when he started his Masters degree in 2010. He advocated hard for the University to provide him with captioning. It was a godsend and enabled him to complete his studies. Studying counselling provided Adam with an opportunity to self-reflect. It taught him a lot about himself and how his deafness had shaped him. But it took almost 35 years. Better late than never I guess.

Adam’s experience has many parallels with my own.  I refused to wear hearing aids for a long time. They were like a beacon that made me stand out like a sore thumb. I just wanted to be like everyone else. I remember friends showing off their ability to finger spell and me avoiding them like the plague – after all I wasn’t like those other deaf people – I spoke, I didn’t need this hand talk stuff.

Looking back I was an absolute mess. I was immature and lacking in any sort of confidence.  Interestingly, a bit like Adam, I was later to discover that I wasn’t really Deaf either. Although I had Deaf friends and partook in Deaf community activities I had a lot of hearing values. English was my language of choice, although I used sign language for social and professional needs. But I was very conscious that this Deaf culture they spoke about and this Deaf identity they spoke about was not really me. Do not get me wrong, I respect Deaf culture and the Deaf identity immensely.  A mark of my respect for it is that I understand what it really means and for me to claim it as my own would be a real insult to those that really do embrace Deaf culture and their Deaf identity.

Like Adam I was presented with an opportunity to really reflect on how my deafness had shaped me. For Adam it was studying counselling for me it was a job that I took on. This job was a research project titled the National Mental Health Education Project for Young Deaf People. What an eye opener that was!

The aim of this project was simply to identify factors that impacted on the development of positive mental health in young deaf people and then use this information to develop a model of support that could target some of these factors. As I researched I came across issues like bullying, family interaction, communication cycles, peer learning and stuff like how overhearing helps us to mature and develop. I learnt how overhearing helps us to develop the vocabulary we need to interact through each stage of our lives. It was fascinating.

I remember being completely gobsmacked by the story of the dinner table. It is a simple story where everyone chats away, it goes something like this. Mums talking, dads talking, siblings are talking and in the background the news is on television. Dad hears something on the TV and begins a discussion on it with one of his sons. The daughter pipes in and adds her views and in no time the discussion is lively and animated. Jokes are made and laughter happens.

Meanwhile the deaf child is sitting there watching it all, understanding nothing. As the family gets more and more animated the deaf child gets interested. In an effort to get involved the deaf child asks his mother, always the mother, what are you talking about. Mother looks at him and says – “Something about the war in Afghanistan, I’ll tell you later.”  Of course the deaf child gets back to his dinner. The opportunity for interaction, learning, language development and relationship building is lost forever.

This was the story that really inspired me because it reflected absolutely my own family experience. It was the story that really summed up my existence in a hearing world. It was a world where you were constantly struggling to get just tid-bits of information. And this information was the nectar of life. It is what makes you as a person and shapes you. Without it you face a constant battle to develop the language and information you need to interact with society in the different stages of life from childhood through to adolescence and adulthood. It is classic Erikson stages of life theory.

And this is what I meant at the start of this article when I said that deafness plays with the mind. Yet we as a society still largely focus on trying to make deaf kids hear. This is ok, and for some it helps a lot. But it doesn’t help enough. There is so much that kids who are deaf miss out on. Through my work I would often meet with kids who were described as having a mild to moderate hearing loss. What always struck me is that they would bemoan the fact that they missed out a lot in group settings. They would describe to me how much of a struggle it was for them to be part of the social group. Everyone thought because their hearing loss was relatively mild it did not have that much impact. The reality is that for these young mild to moderately deaf people It was hard, hard work. I suspect that this is the same for many young people with Cochlear implants.

I was fortunate that in 1999 I was given the opportunity to develop a program in Adelaide that focussed on the development of positive mental health in young deaf people. I developed a program that used role models, mentors and peer learning. We supported families using what we called communication mentors. A deaf person would go to the deaf kids family home. This was usually always after hours. We planned it this way because we wanted all the family involved. We wanted families to understand that they had a place in the communication cycle and this included grandparents and even close friends. We wanted families to be aware of the immense responsibilities placed on mothers to interpret all the family communication to the deaf kid. We wanted this responsibility shared. We wanted families to develop communication and include the deaf kids as much as they could. Why? Because it is through this communication that so much life learning occurs.

The communication mentor would share their own experiences and their own frustrations of growing up in a hearing family. They would pass on the skills, experience and knowledge that they had developed as a “successful deaf person” to the family.  This assisted the family to support the deaf kids to be more active members of the family. And it worked! Oh yes it worked. It wasn’t perfect but it targeted the real issues. It wasn’t just about making the deaf kid hear well. It was about everyone in the family being aware of the importance of communication and chipping in.

Then we had peer groups, life skill mentors, leadership groups. We linked young deaf people up in the country with young deaf people in the city.  We did this with really basic video conferencing. (It was 2000, fast internet was not yet here.) Together these country and city deaf kids planned events and functions. Signing and oral kids were thrown in a room and made to work out strategies where all could communicate. Groups of deaf kids role-played situations where they had to negotiate support needs at work or university and with real life professionals. It was all about developing “Deaf Life Skills” and entering into adult life with the skills and knowledge to be a successful deaf adult in life. That’s why we called it the SAIL program – Successful Adults in Life.

I say this without reservations and without a hint of conceit. It was the best program of its type in Australia and probably right up there among the best programs in the world. I was proud of it. I was really proud of it especially when it was expanded to include Blind and vision impaired kids. It expanded to four full time staff and every one of them was either deaf, blind or had a disability. And we had 30 or so casual mentors all who went through a training program. All who were required to do a Mandatory Reporting course. They were not volunteers; they were valued and paid workers. It was Australia’s first real Deaf Mentor program.

I said to my friend Adam that I wished that as a young kid that he and I could have had access to the SAIL program. I can tell you now it would have made my life so much easier entering into adulthood. The psychosocial needs of deaf kids are much neglected and not well understood.

So what happened to the SAIL program? Well the sensory sector in South Australia pulled it apart and destroyed it. Rather than try to understand its benefits they wanted its money. We had $300 000 back in 2000 and all the sensory sector did was fight over it. The program was evaluated independently and 98% of respondents indicated that they thought it was an extremely valued and needed program. Eventually SAIL was swallowed up into the services of Townsend House and operated by people who had no clue as to its purpose. It’s now, sadly, but a shadow of what it once was. Rest in peace SAIL – I hope that you can be resurrected someday soon. The Adam’s and the me’s of this world need you.


 

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10 thoughts on “The Mind Game!

  1. Well done Gary …. I so remember the SAIL program and how I trained as a mentor and eventually took on the responsibility of running the program after you and Alex left… So much good come out of it and the comments from families about its benefits was so enthrawling …after I left candoforkids it disappeared ….such a shame as it was so successful….

  2. Great article. Well said and clearly…any chance of presenting this information both captioned and in Auslan as your story is a familiar experience shared by many people who are deaf and hard of hearing.

    • Thanks for the comment Iren. From time to time we do put up Auslan versions. Being volunteers we sometimes get a bit busy and it isnt always possible. Because its Xmas we are all obviously very busy. In this instance I think time will beat us. That said if anyone wants to have a go at translating and captioning it, and sends it tom me to check for accuracy I will embedd the video in the post. Cheers.

  3. First of all I like to say thank you to Julie Judd for translation. And thank you The Rebuttal for keeping going and thank you Gary for sharing your personal experiences. Naturally I am so stirred up by the article, I been pulled into many different situations with myself as deaf child using total communication (signed English and spoken English) along with deaf brother using our own language at home (later realised we used similar Auslan) then during teenager, denying my deafness to be accept by hearing/normal people then got involve Deaf Community, I quickly found myself home but battled with many different deaf people with their own opinions what Deaf person should be or shouldn’t be. They often question why my brother and myself are so different and why he is not in the Deaf community, it is so frustrating as he could not fit in, like Adam. Thanks to oldest Deaf people, like John Lovett I found myself comfortable with who I am however I struggled dealing with my Deaf and hearing impaired (HH) with their own problems which also affected me and I tried be stronger than them to help them get through life. My older sister have moderate hearing loss, I did not realise until I was adult that I actually have “deaf sister” but it pain me that she does not fit in either deaf or hearing world like Adam. I than married two Deaf men (one divorced and one currently separated) (technically they are oral and later learnt sign at their adult age) they both affect me greatly and left me in hopeless situation once again like my brother and sister as well my friends. I discovered that I have Deaf cousin who was adopted out, she is so much like me but more of Adam. I am trying to be strong & supportive to my separated husband who is diagnosed as manic depression, he is a lot like Adam and still struggling to fit in either Deaf or hearing worlds. As a mother myself I found myself once again that my children also suffer depression as they grew up under Deaf (Deaf culture and Adam, bit of mixture & depression) parents, it’s a mess for them at times as expect of KODA. I too suffer depression at times trying to keep above and live out my life as I should be entitled as any human being whether deaf or not. I went to ACT Mental Health asking for their support to bring signing counsellor from Wollongong, it took them one and half years to approve a 6 months trial (later approved to come to Canberra every second Fridays and Saturdays due to growing demand of service by Deaf and HH, I felt such a relief to get help for my deaf brother and separated husband, a huge pressure off myself, interesting enough I didn’t want to go to this counsellor as fear of conflict but it was not until four years later I went into joint session with my separate husband that it hit me that I should have gone earlier. I am thankful for ACT Mental Health to continue fund counselling over five years! I take my hat off this counsellor for 6 hours around trips every forthrightly! Gary, what do you understand or what the difference between SAIL and Hear for Us? I too wish I have attend SAIL if I knew it exist. (Emotional)

  4. First of all Amanda Sullivan. It is hard for meto comment on the differences between SAIL and Hear for You. It is safe to say they have similar aims. Dave Brady or Meg Aumann are better placed to say. Perhaps a major difference was the intensive family support and the use of communications mentors who were deaf to deliver this. The mentor would be matched depending on family circumstances and life experience where possible. We also did some intensive one on one mentoring where the aim was to explore various life circumstances in practical ways. Like for example using the NRS to find out information and organise things. The peer support was also structured so that the young people involved could explore deaf issues. for example signing and oral deaf would meet without an interpreter and with a facilitator explore ways to make communication happen. We would link this to situations in the hearing world at work or wherever that they might have to deal with where communication was a challenge. We had a sexuality program too where sex and sexuality were explored. Some of our mntors did sexuality training at SHINE in South Australia. It was very structured and intensive and so much more to explain. The youth leadership groups, for example, ran themselves and we provided admin support. The planned, organised and implemented all activities. Hope that helps and that Dave and Meg can add any info about Hear for You that is of value.

  5. Thanks for the story Gary, and for the reminder about the SAIL program and the profound impact it had on the program clients and also their families and even the mentors and workers.

    Today I had Xmas breakfast with 2 of the ex-SAIL staff and I talk to the other 1 of your past staff regularly, and I see how they have all been influenced by the values of the program and how they have taken those values into their subsequent roles to continue to influence change for young people.

    It was a great program and, like you, I mourn its loss but I also believe that it has changed the world for many and that they will change the world for many more – well done you!

  6. Thanks for the story Gary, and for the reminder about the SAIL program and the profound impact it had on the program clients and also their families and even the mentors and workers.

    Today I had Xmas breakfast with 2 of the ex-SAIL staff and I talk to the other 1 of your past staff regularly, and I see how they have all been influenced by the values of the program and how they have taken those values into their subsequent roles to continue to influence change for young people.

    It was a great program and, like you, I mourn its loss but I also believe that it has changed the world for many and that they will change the world for many more – well done you!

  7. Why should it be a loss?

    It’s there, to be USED for EVERYONE”s benefits!

    Why not turn it into a WORKBOOK for everyone to use, simple to use, easy to implement, ANYWHERE!

    Why think it’s not available when it’s available in the form of a book? A book that is easily available everywhere, and not too expensive, either.

    I would think it would work.

    I am very suspicious of those who buries stuff. Why? Whne i works so well, why bury it, just because of money? Or some ulterior motive? I suspected they HATED the deafs and would use any means to destroy what we created. FCK THEM! They can get lost, and we GO OUR OWN WAY!

    Ha ha ha ha!

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