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Missing pieces

by In Wales Sun Nov 4th, 2007 at 06:05:10 PM EST

This is one of these things that I spend most of my life riding through and trying to make light of but every so often it gives me a smack in the face.  And I feel compelled to try to point some things out.  It's a purge, I have to have these rants every so often and it isn't directed at anyone, just at the set up of the world in general.

I began a reply to DoDo/MfM in the OT because I felt as though I needed to explain why I had missed something as important as clause 4. This diary isn't related to clause 4 or anything anyone said, it just reminded me of things I usually ignore for the sake of my sanity.  I've been thinking about writing this diary for a while now.

I think I probably miss far more of the information that people absorb just by listening to stuff than perhaps I can ever realise.  So many information sources are cut off to me.  Listening to conversations around me, having the radio or tv on in the background, colleagues chatting around the office, or just coming across audio snippets of information wherever they occur - I have no access to that at all.  I miss out a great deal of the informal routes by which people learn and obtain information, even if they are not doing it entirely consciously. That's not an insignificant amount of information.

For a smart person I have huge knowledge gaps, and when this occurs in areas that seem to be common or collective knowledge, I have to fight so hard to remind myself that I'm not stupid.  I miss many fundamentals that other aspects are built on.  

How do people start conversations, do small talk? What are people talking to each other about? I had no idea because I'd just never been able to overhear other people's interactions with each other. It took years as an adult to learn how to do that properly.

Those information gaps, those little linguistic non-spoken rules that govern individual and group interactions, that I just don't pick up on because they are entirely audio based.  At least bit by bit, I begin to learn about these things. At least I know I don't know them now.

I can't count the number of times that I've not found out about something important because colleagues/friends had a conversation about it in my presence, completely forgetting that I'd not have heard a single word of it.  Somehow by being present, I ought to absorb important information through the ether, without anyone taking a moment to ensure that I actually have been aware of the conversation.

I'm fed up with being made to feel like I am too much effort. Largely, friends and people who know me well have adapted, just as I have to adapt to function properly in a society geared up around hearing and audio and the sound-a-holic nature of this world.  Every so often I come across a snotty sales assistant, someone in a call centre who refuses to talk to me when I am using my textphone, customer 'services' that refuse to email or write to me and instead keep phoning and phoning until I answer my mobile or get a friend to do it for me.

Why should I have to get anyone else to do simple tasks for me?  Why should I wait for a friend to be around to sort a call out for me, to deal with my insurance, or a problem with the bank, because they just don't know how to deal with deaf people?

Why is it somehow ok for me to be treated like I am causing a massive problem and putting other people out when I ask why a film that was advertised as being a subtitled screening isnt subtitled?  

Why do I have to keep tolerating people who apparently know much more about my hearing loss and how to deal with it than I do?

I have to adapt almost everything I do in this world, and all I ask is that people use the prefix on my textphone number so I can answer calls, or for people to make the effort to send an sms or email when they would usually phone.  Instead of not bothering to contact me at all and leaving me out of the loop. Or to not be rude to me when I ask to use a facility for deaf people that they advertise.

An average person may only come across a deaf person on very rare occasions.  To that Mr Joe Bloggs, being a bit thoughtless, or rude on one occasion doesn't really mean all that much.  But try standing in my fucking shoes for a week, because I come across Mr Joe Bloggs many times a day.  
And once, well fuck that, whatever. But every day, a few times a day, being given 'looks', being treated as though I am stupid, being denied access to the opportunities that everyone else has.  Live with that.

Mostly I do, and I brush it off, because I've been there, done that so many times.  I've become desensitised to it.  But sometimes it just builds up and it isn't just about me because I deal with it well, I'm in a good place and I know how to fight my corner. But many people don't have those skills and they will keep on being marginalised and trampled on all the time.  People end their lives over this kind of treatment.

I shouldn't feel uber-grateful when a stranger is polite to me and talks to me like I'm human. Work is easy now because my reputation goes before me. I go into a meeting and people know who I am even if they haven't met me, I've established my status but I bet you anything I had to work a damn sight harder than anyone else would to position myself there.

I'm always putting pieces together, almost getting the full picture only then to find that something is missing.  Lipreading is like doing a jigsaw puzzle, and wears me right out in the process. Navigating my way through a world of information in a format I can't open, leaves me feeling confused most of the time.

Sometimes I think I make it all look too easy.  Sometimes I think people just need reminding that it is anything but that.

It is a challenge, isn't it. But sometimes I am also greatful not having to hear everything, it is harder to indoctrinate me at the supermarket, as I can't understand what they say I don't have to buy extra stuff. But yes, it is frustrating if people who know the problem talk while holding their hands in front of their mouth and getting impatient because I can't understand them well.

You know I do admire you, I think you are doing a great job and you are a great inspiration and hope to me. My hearing isn't that bad and I think if it ever should happend I still can have a meaningful live - because you do. So thanks for sharing. :-)

by Fran (fran at eurotrib dot com) on Mon Nov 5th, 2007 at 12:40:19 AM EST
Thanks Fran.  I try to keep upbeat about it all mostly and give a kick up the ass to the harder stuff.  But I don't think it is healthy to deny the existence of all those things that anger and frustrate me, good to let it out every so often.

You're doing just fine too!

by In Wales (inwales aaat eurotrib.com) on Mon Nov 5th, 2007 at 02:18:15 AM EST
[ Parent ]
I ahv eno idea.. but I woudl say two words: Keep upbeat...

Form the list , there are some case that in a normal day you can take it with a smile...  on the other hand there is some kind of stubborness that well..ñññññ. may be sarcasm.. maybe ... well I do not know.. but for example the rejection to send e-mails...w ell you can really use the famous e-mail line "whichttime do you live on, pleistocene?"... as way to ridicule them...

But.. as you say sometimes just getting pissed is more than appropriate...

but I really dunno.

A pleasure

I therefore claim to show, not how men think in myths, but how myths operate in men's minds without their being aware of the fact. Levi-Strauss, Claude

by kcurie on Mon Nov 5th, 2007 at 05:01:41 AM EST
I like your put-down. I will let you know when I use it! Likely they wouldn't know what I was talking about which will amuse me even more.
by In Wales (inwales aaat eurotrib.com) on Mon Nov 5th, 2007 at 07:38:02 AM EST
[ Parent ]

The more they look like stupid without oneself sounding over the top the merrier...

A pleasure

I therefore claim to show, not how men think in myths, but how myths operate in men's minds without their being aware of the fact. Levi-Strauss, Claude

by kcurie on Mon Nov 5th, 2007 at 08:16:52 AM EST
[ Parent ]
i wonder which sense you have used the most to compensate for the audio dropout...

as a musician your plight is unimaginable horrifying to me, i strive in vain to put myself in your shoes, and quail at the implications.

i try not to depend on hightech as fantasy way out of my problems, (that's why it's so wonderful when it does work that way, like with this laptop!), but if i were in your shoes i think i would place my hopes there.

last night i was watching a nat. geographic documentary on the human body and there was a lot of tech stuff to be awed by, such as an eye surgeon who put in 16 tiny electrodes into the back of a blind person's eye, to replace 100s of 1000s, and she regained her vision to a great degree.

there was some amazing stuff about stem cells too.

blind people usually make great masseurs, do deaf people attain excellence in other fields?

thanks for this expression of your anguish, we all need reminding of what should be obvious once in a while.

sometimes i think i get the tiniest of hints of how you might feel, when i expend a lot of energy explaining something to someone who isn't really listening, or the experience of being surrounded by people talking in a language i am clueless about, like it was for me in many of my travels in india, iran, afghanistan, turkey, greece, morocco, it got to  be extremely frustrating, and made me consciously choose to settle where i stood a chance of understanding what people are chattering about around me.

but this pales to insignificance when i think of living in a silent world...

i respect your attitude to life enormously, in wales, and a m regularly inspired to care more deeply about my fellow man and woman because of your posts.

and i pray that science or healing will eventually learn how to resolve this affliction you have, so you can learn all there is to learn through the worlds of sound.

please continue to share... rest assured, you are a mistress of communication, through your pix and posts, and i always look forward to your offerings here.

your pain is equally valued as your positivity, it's all fuel for who you are, and who you are is much bigger than what you imagine, we are all wounded in different ways, and must walk on just the same, often surrounded by people who seem better equipped for life's difficulties.

you might not feel the vibrations in my voice, but i believe you have ears in your heart, which still work very well.

i'm sorry if this sounds mawkish, it's hard to express right, though i'll die trying...

good luck, we're rooting for you!

'The history of public debt is full of irony. It rarely follows our ideas of order and justice.' Thomas Piketty

by melo (melometa4(at)gmail.com) on Mon Nov 5th, 2007 at 07:11:39 AM EST
I appreciate what you are saying melo and thank you.

I guess there are quite a few points to respond to there.  One is that you look at this from the point of view of loss.  You think what would it do to you if you lost your hearing?  You see, I've never lost anything, I just work with a different set of tools.  But the fact remains is that I am the one that is different from the majority and therefore I have to try to fit in. Assimilation rather than integration.  

I don't think the problem lies with me and I don't know what I haven't got so I don't feel aggrieved about that.  I do feel aggrieved about being reduced to a lower status, less deserving, not so valuable in society.

My world isn't silent but you wouldn't recognise it.  The same way you learn to recognise sounds and what they mean, I do as well but the information I work from is far more ambiguous and patchy and misinforms a lot of the time.

I think some obscure sense takes over. I read people and interactions rather than listening. So sight obviously, but I have some talent in interpreting the meaning of what I see before me, although that still leads often to different conclusions than others seem to reach!

by In Wales (inwales aaat eurotrib.com) on Mon Nov 5th, 2007 at 08:01:12 AM EST
[ Parent ]
although that still leads often to different conclusions than others seem to reach!

that dosn't mean you're wrong though, just because your in a minority.

Any idiot can face a crisis - it's day to day living that wears you out.

by ceebs (ceebs (at) eurotrib (dot) com) on Mon Nov 5th, 2007 at 08:30:01 AM EST
[ Parent ]
I try to remind myself of that!  It's called out of the box thinking, innit?
by In Wales (inwales aaat eurotrib.com) on Mon Nov 5th, 2007 at 08:52:53 AM EST
[ Parent ]
I suppose so,

although you could just call the general view Institutional blindness.

Any idiot can face a crisis - it's day to day living that wears you out.

by ceebs (ceebs (at) eurotrib (dot) com) on Mon Nov 5th, 2007 at 08:55:39 AM EST
[ Parent ]
In Wales:

But the fact remains is that I am the one that is different from the majority and therefore I have to try to fit in. Assimilation rather than integration.  

Well, not so different. I think everyone has areas which they find difficult, and it's rare to get the consideration that might be wanted for them.

My expectations of sales and marketing people are so low that I'd be surprised if they did manage to remember to email you. Or anyone.

Sometimes it's not so much about people's inability to respond intelligently to someone with a disability, as to respond intelligently to anyone in general.

by ThatBritGuy (thatbritguy (at) googlemail.com) on Mon Nov 5th, 2007 at 10:56:27 AM EST
[ Parent ]
Although you say this diary is not related to the Clause 4 stuff, I am sorry that that discussion reminded you of this situation your inconsiderate fellow people put you into...

For the record, I myself never thought of what you write above, or you being stupid, I just thought you were... normal 18 :-)

On the Joe Bloggses of this world, they'd deserve a smackdown from one of their victims ever so often...

*Lunatic*, n.
One whose delusions are out of fashion.

by DoDo on Mon Nov 5th, 2007 at 03:22:46 PM EST
Yep, 18 and clueless!  It reminded me because it made me wonder was clause 4 one of those things that I missed just because I wasn't exposed to the kind of people who would give a shit about what the Labour party were doing (I lived in Tory Heartlands then) or one of those things I missed because I wouldn't have picked up on it in conversation, either then or more recently.  

I decided that clause 4 is an important thing that not enough people know about.  But I've been wanting to write this diary for a while and haven't known where to start so it shoved me into action. No bad thing.

by In Wales (inwales aaat eurotrib.com) on Mon Nov 5th, 2007 at 06:06:49 PM EST
[ Parent ]
Yes, it's the peripherals you miss that are often the bits that make sense. Kinda like reading a newspaper from the net; it's not just that it's not the same experience, it's that you don't see the same information or understand it in the same way.

So long as you are around to remind us, we at least will try to be more aware. So don't be afraid to be forthright on the subject.

keep to the Fen Causeway

by Helen (lareinagal at yahoo dot co dot uk) on Mon Nov 5th, 2007 at 05:17:21 PM EST
I needed to ´hear´ this, In Wales! because it gives me the full picture of what it´s like for you and remind me to be more aware in general.

Trying to imagine the accumulation of frustration for you on a daily basis, seems overwhelming, yet you have learned to manage it positively.  Of course, on ET, I can´t tell any difference until you tell someone new and I forget, but I´ll try to be more thoughtful about other people´s differences.

Our knowledge has surpassed our wisdom. -Charu Saxena.

by metavision on Tue Nov 6th, 2007 at 05:46:35 PM EST

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