Sunday, 26 July 2015

DeaF Guy: Frozen: Let it go

DeaF Guy: Frozen: Let it go: As an ‘oral success’, I want to reflect on what this means and where it takes me and where it does not.  An ‘oral success’? Because I spe...

Thursday, 23 July 2015

Frozen: Let it go

As an ‘oral success’, I want to reflect on what this means and where it takes me and where it does not.
 An ‘oral success’? Because I speak, in my case, English, as well as a first language user, with the right tonal and linguistic fluency, I can claim that it is my first language. However, it has to be said that without hearing-aids I would not have acquired this skillful use of language. So in that sense I am a successful oral deaf person. In fact, although Afrikaans is the second language that I acquired at school, without the same kind of intensive and extensive oral training as English, I did not become nearly as proficient at this language as my first language. So much so, that I am ‘frozen’ by the fear of speaking in Afrikaans, especially to an Afrikaans speaker who can hear how badly I can mangle their language. So I prefer to keep quiet. Afrikaans was a serious struggle for me at school, and I just managed to scrape through. The orals in Afrikaans were my weakest part of the language.
In contrast, learning sign language as my third, and belated, language was a much more liberating experience for me. Even though this is not my first language, and only being exposed to good sign language users in my late 30s, and this was then followed with the doing the hard yards of learning and using the language from then on. And it will always be at a second language level to me, even though I want to reach higher. Nevertheless, it is my language, I am proud of where I have got to, and still learning it. It is far more useful and meaningful to me than Afrikaans. When I switch off my hearing-aids, sign language makes so much more sense to me. Although, for the purpose of following in meetings, it is still benefitual for follow the interpreter with a more signed English version so that I do not miss out on the nuances of the speaker’s points and terms in the meeting, as there is a lot of academic discourse and terminology and ways of saying things that can get lost when signed in SASL. I know that from what I pick up from some of the speakers and how not all of this is conveyed via the interpreter to me. Of course, this is not the interpreter’s fault, because the role of the interpreter is to convey the message to the clients. If I am the only person for whom the interpreter is interpreting, then I can dictate to the interpreter what I need in the meeting and its mode, i.e. more signed English or less.
That is one scenario I wanted to cover here. Another scenario is from the experience I had recently with the loop system. Yesterday when I did not use the loop system in a small class that know me, I found out a few unpleasant things about myself and being an ‘oral deaf success’. Firstly, I really do benefit from the loop system, and because I had not connected it, although it was there in the class, I found that I was left behind in the to-ing and fro-ing of the classroom discussion. Instead of immediately stopping everything and everyone with the comment about the fact that I am not really following, and would they please hold on till I am properly hooked up, I froze. It was not a conscious decision to freeze, but a consequence of two things happening. Because I was so busy trying to process incomplete signals and messages and multiple messages from the conversation that jumped all around the room, I was on the back foot because of this listening flaw, and its subsequent cognitive processing delay. This meant that I found myself trying to think through what is being said and comprehend this information and construct a thoughtful reply. By then the conversation had moved on. At some points, I made comments that were a step behind. It was not a huge delay, but it was a noticeable delay and had an impact on how I was running flat-out behind everyone, while they were having a refreshing jog through the topic. Phew, I was exhausted, in fact, I was too overwhelmed with trying so hard that I was tired out, and therefore a silent passive partner to this conversation when I could have been an active dialogue-er. Hence, I was silent. Being an introvert in character, this is easy to miss. The longer this went on for, the greater the sense of embarrassment of missing that golden opportunity that was available at the beginning to establish the foundation of communication on my terms, so that the oral deaf person was not left behind. That was my fault. With hindsight and reflection on this in this blog, I realized that it would always be best option for me to get this absolutely right from the start. For me, I suppose that the feeling of being the solitaire/only deaf person came back to haunt me among the group of hearing people. Even though they are all well-versed in sign language and deaf culture and sensitive to deaf communication needs, I failed to stand up and make myself clear that they were not clear enough for me.  It takes great courage to say what I need to a group, ‘please …..’ whatever it is that I need, speak up, wait for me to be connected, could you sit over there so I can see your lips, I am going to move over there so that I can see…. This is the statements of an oral deaf person needs to make tin order to fully be a part of the session. And that is ok to ask, declare. I had to get over that, to let it go of the sense of being embarrassed by making my unusual needs so explicit. It is always easier to practice these in your mind but quite another thing to say these to people. I suppose we hunger for connection, and are equally terrified of the possibility of rejection, of being ignored, embarrassed, mocked, spurned. That is the legacy of unspecified painful experiences from being embarrassed in a mainstream education setting where being outspoken about ones difference, of my hearing aids, hearing loss, and that I cannot hear was frowned upon, or ridiculed. 
               Now, having said that: I am in the place to ‘Let it go’.  The cold touch of this fear will never bother me anymore.  I am becoming an ‘Unfrozen’ oral deaf person.
The next thing I want to talk about is being deaf.
As far as I can recall, and from my parents stories, I was born deaf. This seems to be the result of being a preemie baby. I was born 6 weeks early. And either the over-saturation or under-saturation of oxygen in the incubator contributed to my hearing loss. It was not profound, but severe, in both ears. So I grew up with a hearing loss. I know that my parents had to shout at me, so I must have picked up basics of English then, unaided but left out of conversations more than a couple of words shouted at me. At 7, I got my first hearing-aids, and had years of speech therapy, I will ask my mom about these points. I really remember hating nursery school, it was so awful, I was so alone I know I missed so much going on there, the songs, the words, the pronunciation, the games, the rules, the basic information, friendships, and conversations and life generally. Sigh. I have been passed recently the school and it brought up a huge wellspring of sadness and soreness of being lost in the world between sounds and silence in me. There, I have said that for the first time.  Getting hearing-aids at the start of Grade 1 was a real opening of the world to me. I could hear so much more and make sense of so much more.  And an enormous amount of catching up, with language and speaking and general knowledge and social skills, I was so immature for my age, that that was a sore point to me. I was shy child and I became more shy with the big stand-out chunky-hearing-aids. At least I could hear. And I could hear enough to be there, I do not regret that. I have an education that I am proud of. But the socio-emotional development needed a lot more work than teachers there anticipated or imagined. And the impact of this underdevelopment and residual fear has persisted till today. It will take courage to always make my voice for my needs heard among the hearing, as I look like I am one of them, and speak like them, and that is a lie that is easy to swallow. But I am not, and no-one can see that inside me. I am in both worlds, hearing and deaf, and at times, in neither. This is the bilingual space that is sacred to me.  This is the ‘inbetweenity’ that Brueggeman talks about or a hybrid identity.       
So to answer the following question:
‘I have chosen oral communication for my hard of hearing child, and since embracing our journey, find myself meeting deaf adults that use sign language. Sign language is very foreign to me, so although I really want to, I feel embarrassed to go up to Deaf adults and initiate a conversation. How can I make things less awkward?’
I want to say this is a good question to ask. Let me respond by saying that the best thing you can do as a parent is learn to listen to your deaf child. Learn to hear them. Be there for him/her. That is what I wanted. From that premise, I wanted my parents to communicate with me. It was not a case of they should have learned sign language. That would have been wonderful. But it was not an option for them, so I cannot hold that against them now, and I need to be mindful of that. They do not need my condemnation of their choices at the time. Let it go. But also be flexible, things and circumstances change. And people too. So give them, parents, and deaf children the freedom to use whatever works and have the space to change when it suits them in their own time. I have seen so much damage done to deaf learners who have grown up and not had the freedom to explore the options. Give parents and their deaf child the freedom also to change, to make mistakes, and find out what works and when and why. No-one can tell you the answer because as I have found out, there is no ‘one-size fits all’ for deaf children. Trust your instinct on what you see happening, and keep all the channels of communication open and available. I am proud of the diversity of languages that I have available.
From my experience of Greece, I saw something that may shed light on this dilemma of joining a signing conversation. I saw two similar hearing people respond in completely different ways to the invitation to attend the Deaf Club in Athens.
One of my close friends went, and simply mingled, and signed, and she fitted in by virtue of being upfront about being a signer. And she was accepted within the Deaf community as a deaf person. Meanwhile another person decided not to go because he thought this was an evening for deaf people, even though he could sign. Thus, he chose not to associate with them. I went to this club, and it was so good to be amongst other deaf people signing and being deaf with them. Of course, there are always some people who are easier to talk to or sign to than others, they will often see you and find you and rescue you and surround you till you are stronger to meet others. I remember these special friends with fondness who nurtured me in my early days of meeting and socializing with Deaf adults. Just being there (where there is a Deaf crowd) is the biggest and most obvious step to make. That alone is making the loudest statement of your intent to be included. And by signing an introduction to someone there says volumes of your willingness to be counted as one of them and you have affirmed them by doing that. And you know what is so beautiful, is to see my mom making that extra-ordinary effort to be at a least a part of my world.  That blows my mind. I do not expect anything more: parents do not have to be native signers, but keep looking for ways to bridge this gap. Then you know me, and you have kept a place in your world for me. And I invite you into my world.
 Back to the beginning point, am I an ‘oral deaf success’? Yes, in that I speak well, and I have a strong foundation in English literacy. But there is the caveat in that this means little if the other side of me is not allowed to speak up. I am deaf, and there will always be situations that are a struggle for me to follow. It is up to me to work around these situations by being clear on what I need and not to miss the opportunity to establish the kind of platform that is needed from the beginning. This is part of who I am and what I need to do. I have tended to shy away from doing that. And it is wrong of me and unfair on others. What kind of role model of an ‘oral success’ am I modeling to others? That question stings.
I am proud of sign language, it has its place in my life and I am also a limited user. But, from last week’s experience of signing my responses on the Deaf panel, I am becoming more confident in using the language that I have publically. And that in itself says a lot about me. I count that as a success story of an oral deaf person.
Going by my audiograms, over the years, there is a distinct downward slope. Like my mother’s mother, my hearing is deteriorating. It is at the 98 dB/102 level 3 years ago. And while there are some very high frequencies that I can hear unaided on one side, the vast majority of sound is not heard. I suppose that a hearing test is needed again soon.  The biggest advantage that I have over my grandmother is that I have sign language for communication, and am blessed with excellent writing skills. So I am not a failure. Being deaf is part of me, and it is my story. And I am not alone. Rather, I am not afraid of being alone. Tell me your story after you have watched Frozen again. I am going home now to watch Let it go (Frozen) on Bluray with subtitles) again. This song says so much about what I am going through. And it encourages me to stand. By writing this, I see a new dawn, I am free.
Song from Frozen Let it go
The snow glows white on the mountain tonight,
not a footprint to be seen.
A kingdom of isolation and it looks like I'm the queen.
The wind is howling like this swirling storm inside.
Couldn't keep it in, Heaven knows I tried.
Don't let them in, don't let them see.
Be the good girl you always have to be.
Conceal, don't feel, don't let them know.
Well, now they know!
Let it go, let it go!
Can't hold it back any more.
Let it go, let it go!
Turn away and slam the door.
I don't care what they're going to say.
Let the storm rage on.
The cold never bothered me anyway.
It's funny how some distance,
makes everything seem small.
And the fears that once controlled me, can't get to me at all
It's time to see what I can do,
to test the limits and break through.
No right, no wrong, no rules for me.
I'm free!
Let it go, let it go.
I am one with the wind and sky.
Let it go, let it go.
You'll never see me cry.
Here I'll stand, and here I'll stay.
Let the storm rage on.
My power flurries through the air into the ground.
My soul is spiraling in frozen fractals all around
And one thought crystallizes like an icy blast
I'm never going back; the past is in the past!
Let it go, let it go.
And I'll rise like the break of dawn.
Let it go, let it go
That perfect girl is gone
Here I stand, in the light of day.

Let the storm rage on!
The cold never bothered me anyway...

Monday, 15 June 2015

Blog:    In the loop      14 June 2015

Wearing the Domino Pro loop and FM system has so far been wonderful. It is an amazing experience to plug in the loop into the laptop and switch over to T-coil and have the sound streamed directly into the hearing –aids bypassing the onboard microphones. It does have a few drawbacks, sometimes the signal is not strong enough to pick up the sound when wearing it on my neck as it  is intended to be worn, so I have found, and I know that I am not the only one who resorts to this, is to wear on my hear. It really looks ridiculous that way, but the signal is then strong. I just wonder if this has a health issue from wearing the loop wire right over my head. So far I have not found anything on google about that, yet.
It also plugs into my blackberry to pick up calls and music, but this phone has a faulty headphone jack, a problem that it has always had, maybe I will get it fixed. One thing that I have noticed is that the bass does not come through nicely, when I got the plug to work on a rare occasion. So, I am not particularly phased about not having this plug working.
Where the loop system really comes into its own, and this reason for existence, is in meetings, classrooms and in church. This is both a blessing and a curse. I will explain. In these places, it really does a great job of picking up voices and sounds from the mike box situated closer to the speakers. It is much stronger than my hearing-aid mikes in this way, and the fact that this is placed much closer to the action, really helps, and I have found that I am picking up much more speech than before. However, there is the curse of too much sound, in other words, like at the last meeting, I heard far more than I have ever heard in a meeting, it is a little disorientating because it is feeding me sound from that location, but that is not where I am, the middle of the table, in front of the main speaker, chairperson. So when I speak, I have found that it helps to reconnect the hearing-aid mike of one hearing-aid so that I can hear my own voice. Otherwise, like I discovered, I cannot hear myself speaking when both t-coils are selected. This is always a weird feeling, of not hearing myself, so I do not know the level and intelligibility of my speech. It is preferable to turn one hearing-aid to mike 1 program before I speak, but I do not always have an opportunity to do that beforehand, and must select while I am speaking. I hope that this is something that is endemic to the use of a FM system, but no-one told  me about that. Coming back to the second issue, the volume of sound is quite overwhelming. I do not mean the level of the sound only, but more in terms of its bit rate, if that term makes more sense. For example, with hearing aids I am running on a 56 K bit rate conversion, and this has been comfortable amount of sound being received and processed digitally, the FM loop system feel, this is my perception of it, is running at 128 K bit rate, and this double bandwidth of purer sound is frankly an huge jump in information. My brain is struggling to cope with this double level of soundstage information. While I am delighted to be able to access so much more sound from a stronger, central point, there is a downside that I need to understand and find ways to work through this for myself in the next meetings/classes and church sessions. While I can hear so much more, I am not under the delusion that I can hear perfectly now. I know that well enough, there are still things that are said that I do not hear. There are still some gaps in pickup of the words. Some people have easier to follow speech than others and some people are a real problem for me to follow. But there are less cases where this happens than before. This is important point to dwell on for a moment, when I am struggling to hear someone then it is more difficult for me to think along and think ahead in the meeting. Simply put, I need time to process what has been said and what it means, and then respond to it. For me, there is a wider gap between hearing and responding to the information. For most people in a meeting, this flow of conversation happens intuitively and almost simultaneously. To be honest, it does frustrate me that I am frequently not on the cusp of the to-ing and fro-ing of a fast flowing conversation. This makes me look dumb for not saying anything, or being just a bit too late with a response to a point/comment that has now been finished by the group. Sigh, that it what happens. Now that I have said that, what can be done to address this problem? I think that when I have a comment to make, it would be both more assertive and informative to say something on the lines that, “Do you mean (summary)…, because with the loop, which I love, however, there is a delay in receiving the sound and for me the process what was said, so I need a little extra time to think about things before I can respond”. No-one else has used a loop in these meetings, so it is up to me to clearly inform people there what I am hearing and what I need from them in the meeting, which means having a little more time to gather my thoughts so that I can also participate.               
So, the benefits of this technology far outweigh the difficulties. It is a powerful system, and I need to learn to control it.  
And this means being aware of my own deaf spots. Just like the blindspots we have in car mirrors; there are zones/spaces, places or situations in which I miss things. Instead of not seeing something, I am in danger of missing what was said, this is not the same as mishearing, which can also happen. I am afraid of missing things, or the importance of something said. There are times when I pick up the urgency of the message, but there are also times when I miss the clues that go with the way something was said because I did not see the way the person said it, or pick up on the hidden message between the speaker and the audience. Hearing and listening are two different things, and while listening is dependent on good hearing, it happens in the brain. But I am aware that I can still miss out on what is meant, immediately, or very quickly. I need to be extra aware to where, when, who and how I miss this in these deaf spots to remove these zones of silence and courageously make sure that I fill in the gaps as soon I can.