Between Two Worlds

tornThis morning I had a funny reminder of just how much information we Deafies miss out on when we integrate with the hearing world. I received a text from my wife, who is also deaf, telling me that we had won the tennis grand final the previous Monday. It is now Sunday and we had been crowned tennis champions for a week and we were blissfully unaware. I had received a text from the organizer congratulating me on our win. I had found this odd, because we rarely lose. As it turns out she was congratulating me on our grand final win and I had no idea.

I am sure our hearing colleagues who make up our team were chatting about the fact that it was a grand final. Not being able to overhear them meant my wife and I had no idea. Most likely they had congratulated us at the net, but my wife and I didn’t hear this either. So we finished the game and headed home. Where we live its freaking cold at night so I wasn’t hanging about. This little story is stark reminder of just how much information deaf people miss out on when they interact in the hearing world.

Hearing and deaf interactions came very much to the forefront recently when a young deaf woman contacted me. Her name is Sian and she is an interior designer. She was seeking advice as to how she might advance further in her career. As it turned out Sian was born into a hearing family and had been the youngest person ever to receive an implant back in 1990. She was just two and a half years old at the time. Four months after her surgery the implantation of young babies was approved by the US Food and Drug Administration. At 19 Sian had a second implant. Deaf babies now have bilateral implants, this was not an option back in 1990.

I will come back to Sian and her original reason for contacting me later. After I met Sian I asked if I could interview her for The Rebuttal. I sent her a list of written questions, which she answered for me. She also asked her mother for her views on some of the questions.

One of the questions that I asked was about the impact at the time she had her implant. Because she was a world first I wondered how people had reacted. Her mother had this to say,

 “Not long after Sian had the cochlear implant, we went to a camp for families with deaf children. Sian’s head was half shaved from the surgery with a massive scar, we wanted to connect with other deaf families but at this event we physically experienced the Deaf community turning their backs on us. This was one of our family’s first experience encountering the Deaf community. Sian was only 3 years old. We wanted to get an understanding of the Deaf community and what it would mean for her. Unfortunately this turned out to be a really negative experience. This was in the early 1990’s. This set the stage of our family not feeling welcomed by the community.”

I well recall this time. In the early days of the Implant some of the more militant factions of the Deaf community reacted savagely to any suggestion that deaf babies should be implanted. They called it child abuse. They screamed that parents were disfiguring babies. They screamed that parents were putting young deaf babies at risk. I vividly recall a prominent member of the Deaf community going on the Today Show to tell the world that cochlear implants had led to paralysis. (It as an over reaction to the fact that a few deaf people had suffered from facial paralysis as a result of the surgeon nicking a crucial nerve during surgery.)

It must have been a horrible time to be a hearing parent of a deaf child and trying to decide whether to implant your deaf child or not. Sadly, because Sian had been the first, her parents seem to have received the brunt of this negative reaction. As a member of the Deaf community I can only apologise profusely to Sian’s mother. I cannot imagine the pain it must have caused. Suffice to say that it was not until Sian was 14 and began to be involved with the Deaf community that the Deaf community began to accept her family.

When Sian contacted me she wanted advice as to how she could progress at work. She is very intelligent. Her spoken language is fantastic. Her written language is superb. She clearly has much to offer but for some reason she had not progressed as much as she wanted to at work. She had  basically been in the same role in all that time. She was not where she wanted to be in terms of her position and skills. She wanted to gain more in her position.  She recounted all of this to me, in tears and clearly very frustrated.

One day I went into my manager’s office and sat down, I told him I was frustrated at where I was and that I was not where I wanted to be. I was in tears, to the point of crying uncontrollably. I told him I wanted more, I compared myself to people I went to university with that have flourished in the industry that are doing extremely well for themselves, in magazine spreads, owning their own business etc; that I was no where near that. I aspire to be like my colleagues, I want to develop my skills and knowledge further, I want more exposure in the industry. I laid all my emotions on the table and my manager took this on board. To his credit, he has been wonderful. Since then, I have been given more than I ever had in the last couple of years, I am being taken seriously and continuously supported to help me to get to where I strive to be.”

Despite her ability to hear well, speak well, write well and do her job competently she had many frustrations working in a hearing organisation. For example she works in an open office that is partitioned off. She hates this because she cannot see any one. She does not know what others are talking about. She does not have access to peer learning nor the ability to be involved n the discussions that her colleagues are having. This is something that many hearing people do not get, particularly in a workplace. One of the ways that people get ahead in their career is simply by listening to what others have to say. In this way they contribute their own ideas and become involved in the DNA of an organization. If they cannot, they are often seen as being the quiet person, content in what they are doing.

The sad thing is that because not much thought is given to how to properly include a deaf person in these “Office Discussions” employers miss-out on the true value of a deaf employee. And as we can see with Sian it can hold back the deaf employee to the point of frustration. Said Sian,

Because I can speak and hear well, my colleagues tend to forget at times that I don’t always hear absolutely everything. The little subtle things can be a huge effort: phone calls; the intense concentration of listening/lip reading; the strain to hear talking across the office; I am proudly continually educating them about deafness and of my needs. Even having to make or receive phone calls have been a challenge, there are people that I can have a comfortable conversation with on the phone, but there are others that I cannot understand a word because of their gruffness in their voice or accents, or speaking too quickly or in particular background noise. I find knowing the context and knowing the voice helps to predict the conversation. I panic when the phone rings at work, I have all these thoughts running through my mind – who is it? What’s the context? What if I cant hear them how do I get out of it?”

 There is always the constant that the deaf employee must re-educate their colleagues as to their needs. Often hearing colleagues are very accommodating but when things get really busy they forget. We deafies constantly have to remind our hearing colleagues of our needs. It can be very tiresome and there are times we just do not have the energy to continuously remind people. Sian has these frustrations too,

“I also get extremely frustrated that I miss out on a lot of information that can float throughout the office, it could be a construction issue or issues with the builder, or any crucial information that would be valuable for my personal development as a designer. The only way I process information is by being told directly or visually.”

And we develop our own strategies too. Sian has some. We all know that the world is designed for hearing people. It often does not stop to consider the needs of Deafies (or any people with a disability) So what happens is we adjust. In Sian’s own words,

“But of late I have come up with a strategy – leave answering machine on so I can listen to the message to know who it is and what they want, I will then figure out if I am able to ring them back or simply email. This is something that I will be raising in my staff review soon. But if its colleagues interstate, I make the effort of telling them to communicate with me via Skype or email. I find this really useful.”

What Sian has described, I call Deaf Life Skills. We really need to teach them to our deaf kids.

In many ways Sian is fortunate because her employer is very responsive to her needs when she raises them. Sian explains,

“I made a point in a meeting that the office layout needed to be changed especially removing the partitions between desks so that I could have a clear view of people around the office so I could try and see conversations (where appropriate). My colleagues support this, it made complete sense to them and that they had not realised that this was a barrier for me. Despite my frustrations at work, any issue that I raise as a result of my deafness is taken seriously and acted upon. At present I am working on developing confidence around my self advocacy skills.”

 Even so, challenges remain for Sian despite the fact that she gets great benefit from her implants. I winced when she explained that she sits in meetings of up to twenty people. She copes by focusing on the people that talk the most but obviously misses out on much information. I was able to give Sian some advice on strategies to deal with such meetings that she is now following up. That is the value of having a good deaf professional network.

“I got some sound amplication devices that are supposed to be of help with certain situations at work but they were such a pain in the arse to get it working; I would have to stop, make all these switches to tune in – for an example if the phone rang, I would have to had to turn on my loop, press a button on my processor to tune into the phone – it was difficult to do this in a number of seconds the phone rings, it got stressful and frustrating. It also meant that it cut out background noise so I could only hear the person on the phone but I could not hear myself responding back, I would speak so loudly’ with colleagues around. There was another device that I got to help with meetings, it would pick up the person speaking and cut out background noise. But I found this not to be as good as it could have been. It would take ages for it to tune in and if I was to respond, I couldn’t hear myself or control my tone. It also didn’t necessarily pick up other people making comments in a meeting, I still missed out of information. These devices made it a hell lot more awkward for me. However I was luckily enough to get some other devices through a different brand which work a lot better, but the thing is I have to remember to make good use of them. Through out my hectic day, I have to remember that I have these devices that I can use that would help – but who thinks to drop everything in order to make things better for ourselves. It is an effort.”

I asked Sian about some of her experiences growing up. She was educated within a Deaf unit. During her primary and secondary education she generally received good support. She recalls her time at primary school as being very happy. She felt accepted by her friends and she felt just like any other student. Things changed when she attended secondary school. Secondary school brought with it a very different set of challenges. This is how Sian describes this time,

“Secondary school was more challenging. The hearing kids were older and came from different primary schools – mostly from schools that did not have a deaf campus so they would not have the understanding of deafness that the kids I went to school with had. I struggled with my identity, bullying and pressures to be ‘accepted’ “

Sian feels that she was lucky to be part of a Deaf Facility during this time. She saw the Deaf facility as her ‘safe haven’ . The deaf students of the deaf facility are friends right up to this day. But even so there were many things that frustrated her,

“Sitting in groups trying to follow the conversations; having to sit at the front of the class room to ensure that I don’t miss any information. I was encouraged to wear an ‘RF’ transmitter which I gave up in year 8 much to my teachers and parents annoyance (in hindsight would have made a difference). Being a teenager I didn’t want to be any more isolated than I already was, it was a struggle enough as it was.”

Sian has battled with depression throughout her teenage and adulthood life. Much of this related to the struggles and frustrations she faced being deaf. Some of her depression was related to personal issues that she doe not wish to raise here.

“Growing up I have always felt a bit isolated in the hearing world trying to fit in and with my on going frustrations, but then I discovered a whole other world – my identity went into overdrive. I am deaf but I am oral but was learning Auslan. Who am I? Which group do I belong to? The Hearing? The Deaf? The Oral? The Signing? In my twenties, I have come to realise that my world is a whole lot richer that I have access to all these groups. I don’t need to belong to just one group. I can move across these groups fluidly. Having said this, I embrace my deafness, this is who I am. Acceptance has been a long journey but I finally have arrived! My teenage years and early adulthood I suffered chronic severe depression, I was very unwell that I had to retreat to focus on getting myself well again.”

Sian’s experience of deafness and interacting with the hearing world is something many deaf people can relate to. It is not a world that is designed for deaf people, even with the most advanced technology. Sometimes I think we are often set up to fail. If we talk well, hear well and appear to be doing great at school, this is often seen as enough. The internal and external struggles that Sian describes are not something hearing people understand well. Her time at university will resonate with many deaf academics,

I had thought that University would have been a phenomenal experience and I had also expected to make some good solid friendships through out my degree. But it was nowhere near that. My peers were from all walks of life with, I am assuming, not much understanding of deafness. It appeared that they seemed hesitant to approach me because I had a notetaker on my arse, the other students may have not have understood the dynamics between the notetaker and me. They may have also not have understood why I had a note taker if I could hear and speak so well. When it came presentation time, I was worried maybe I would be presenting something completely different to the rest of the class. If I can’t hear or the strain to hear is too much of an effort, I zone out. It is exhausting. I tried my best to be like my peers. To say it was a challenge is an understatement. I wish there was live captioning when I was at university, this would have made a world’s difference to me.”

I asked Sian whether having a cochlear implant meant that many people often had unrealistic expectations of what she could hear and do. Her answer was revealing,

“We need to continually educate the hearing world that just because we have cochlear implants it does not mean that we have 100% hearing, that we are still deaf and we still require support and assistance.”

And we need to educate the Deaf world too. I am still cringing at the backlash that Sian’s parents must have received when they made the very difficult decision to implant her. There are still these elements of the Deaf community that aggressively slam parents of deaf children and the hearing world for pushing cochlear implants. Don’t get me wrong; I also get frustrated with a system that constantly peddles biased information. Even so hearing parents of deaf children are often unfairly targeted and this causes them great pain. Not only does it cause them pain put it also leads to them withdrawing and even shunning the Deaf community. This means that their deaf kids miss out on so many wonderful social opportunities. As I bring this article to a close I ask all my deaf readers to carefully consider this last statement from Sian’s mother,

 I wish now that Sian had contact with the deaf signing community earlier on and that Sian was accepted by them. Being marginalized by the signing community I think caused many problems. It created a situation of us and them. Unfortunately this meant that she was not able to experience being a member of the deaf community until she was about 14 when she became involved in the Deaf community and learned to sign. It was clear that it was what she needed because she flourished in this environment. I wished back then that the Deaf community embraced all people who were deaf or hard of hearing, those who spoke or signed. Considering what we know about the brain’s plasticity now, I may have looked at Sian’s communication needs differently. I may have considered using Australian sign language before Sian learned to speak. But I would definitely have continued with our oral crusade.”

 Food for thought?

Thank you Sian and her mum. It has been a privilege to write your story.

2 thoughts on “Between Two Worlds

  1. Impressive article! Thank you for writing this and sharing Sian’s story. I am Deaf and I believe I went to the same school as Sian, and I had very much the same experiences she did except I did not have the cochlear until I was 13. I found I cannot hear words clearly, this will never happen due to me being born fully Deaf but I can hear sounds and recognise some. I find it frustrating when I have to constantly educate and remind people that I am Deaf and need communication support (pen paper, phone etc) or when I say strictly sms only, often people ignore this and ring me.

  2. IDK the context, maybe she did tried to be sensitive — I’m just commenting based off this article, but… Maybe the mother actually could try to be more sensitive, rather than parading her daughter’s half-shaven head, the CI and the massive scar around in the camp amongst the Deaf people.

    Examples – having the CI after the camp, or a year later until the next camp when it’s easier to hide, and thus enabling her to behave in a culturally sensitive way.
    From how it’s written in this article, it’s just obviously a really abrasive and ignorant action.

    Please do not make mind to place the primary blame on the Deaf community and how they reacted to you. It’s shitty that they reacted like this and I agree that some of them could do with little more openness of the mind – but it’s a knee jerk reaction when you felt like you’re being punched in the gut by the very potent, oppressive oralist attitudes that surrounds the CI craze. So, if you haven’t already, then, please, try to start to understand and sympathise with that.

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