Up Front by Emma Hart

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Up Front: The Holland Diaries, Pt 1

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  • Hilary Stace,

    Thanks Emma. I really like parent stories, and even though each one is of course unique, they all contribute to normalising impairments as just part of human diversity. And like Gordon Brown and Duncan Cameron talking openly about their disabled children it makes it easier for the rest of us. Our children don't have to be heroes or tragedies, but are allowed to be normal kids being part of ordinary families doing regular kid stuff.

    By the way I use disabled in the sense of disabled by the barriers society puts up such as funding and service issues. Increased awareness is one way to attack the disabling society.

    And did you all learn NZ Sign? I would like it to be a compulsory school subject from 5 years old for all children as it could be extremely useful in all sorts of circumstances for all of us.

    Wgtn • Since Jun 2008 • 3199 posts Report Reply

  • Graeme Edgeler,

    This has made me much more at peace with the word 'handicapped'. She was naturally so pretty and clever and talented that she's been given an extra load to carry, just to make it fair on everyone else.

    I always did think handicap was a more accurate, nicer way of describing disability. It makes things harder, it doesn't stop them altogether (disabled, just seems, and maybe it doesn't technically, like it means not able ).

    Wellington, New Zealand • Since Nov 2006 • 3202 posts Report Reply

  • Emma Hart,

    And did you all learn NZ Sign? I would like it to be a compulsory school subject from 5 years old for all children as it could be extremely useful in all sorts of circumstances for all of us.

    This is something that's improved since we went through the system. Pre-school kids at van Asch are now taught speech AND Sign, instead of the rigid either-or thing we went through. Initially though, we were just struggling to get her speech to a point where she could be understood at school.

    One of my battles has been to try to get a Sign class that my daughter and I could go to together. There were geographically-handy night classes, but my daughter was under 16 so couldn't enrol in them. And we're about as far as you can get geographically from van Asch and still be in the same city, so timing issues round classes just killed.

    But. This year I believe we've finally cracked it, and the Deaf Association in town is running classes.

    We have taught ourselves a bit of Sign, and last year my daughter was in the Sign production of Oliver Twist that van Asch did. But like any language, fluency depends on using it all the time.

    I should say that as far as describing disability goes, I'm happy for everyone to use the language that works for them. My girl gets ropey if you use any word to describe her that isn't her name.

    Christchurch • Since Nov 2006 • 4650 posts Report Reply

  • giovanni tiso,

    I would like it to be a compulsory school subject from 5 years old for all children as it could be extremely useful in all sorts of circumstances for all of us.

    I don't know about compulsory - I'd like Maori to be compulsory, and a foreign language to be encouraged, so if you add sign and English that leaves twenty minutes a week to attend to everything else. Plus talk about the backlash you'd get. But widely taught, heck, yes.

    I used to go to school next to the deaf school in Milan and we had no contact at all except a couple of times a year we'd have a soccer game. Now if you can imagine a group of vociferous 11 yearold playing soccer and then a another group of completely silent ones, you'd get an idea of the slightly surreal scene. And they murdered us each and every time, of course. Years later the philosophy of teaching deaf kids changed and they closed the school, which was tragic. How tragic I never knew until some more years later when I read Sacks' Seeing Voices, a book that changed my way of looking at language, not just sign. And different abilities.

    Beautiful post, Emma, as per usual. Possibly more than usual.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • andrew llewellyn,

    There was a point at which the doctor's voice receded, becoming inaudible under a white sea of shock. He was telling us quite important things, but no matter how hard I tried I couldn't hear a word he said.

    Unfortunately, I know exactly what you mean.

    If you have the chance (it's hard to come by) watch the movie Beyond Silence with your daughter

    Since Nov 2006 • 2075 posts Report Reply

  • Michael Stevens,

    Thanks you for this post Emma, and I am sure she will grow and prosperwith the love and support you demonstrate around her.

    Auckland • Since Nov 2006 • 230 posts Report Reply

  • Emma Hart,

    I don't know about compulsory - I'd like Maori to be compulsory, and a foreign language to be encouraged, so if you add sign and English that leaves twenty minutes a week to attend to everything else. Plus talk about the backlash you'd get. But widely taught, heck, yes.

    Yeah... I'd like to see it more widely available as a language option at high school. One of the problems with spreading NZSL is the chronic shortage of interpreters and people skilled to teach it. It is available at my son's high school.

    Unfortunately, I know exactly what you mean.

    One of my friends has just said this was exactly how she felt when her father was diagnosed with MS. I think there's a valuable lesson here: if you're going to give people bad news, and you have to give them important information as well, write it down.

    Christchurch • Since Nov 2006 • 4650 posts Report Reply

  • Mikaere Curtis,

    I would like it to be a compulsory school subject from 5 years old for all children as it could be extremely useful in all sorts of circumstances for all of us.

    I fully agree. It has been our third official language for almost three years now, and it would be a great language for our kids to learn. It would certainly make ordering drinks in a loud bar easier...

    My wife is a NZSL interpreter, so I've spent a fair amount of time with Deaf people. It does seem to me that if we were to generalise the uptake of NZSL, one impact would be that Deaf culture be significantly transformed as Deaf would be able to more easily integrate into non-Deaf circles.

    Tamaki Makaurau • Since Nov 2006 • 528 posts Report Reply

  • Gareth Ward,

    There was a point at which the doctor's voice receded, becoming inaudible under a white sea of shock. He was telling us quite important things, but no matter how hard I tried I couldn't hear a word he said.

    Maternal empathy perhaps.

    A lovely story (not the right word at all) as always - can I ask how "impaired" (seriously, I have no grasp of appropriate words today) her hearing is once it's enhanced with hearing aids? Obviously still a fair way down given she needs an FM system and NZSL figures so prominently?

    Auckland, NZ • Since Mar 2007 • 1727 posts Report Reply

  • Hilary Stace,

    A colleague who has a deaf son completed her Masters thesis last year on the experiences of parents of D/deaf/hearing impaired children who had cochlea implants. She interviewed several parents around NZ. I don't think she has published anything yet but it was a fascinating project.

    Wgtn • Since Jun 2008 • 3199 posts Report Reply

  • Emma Hart,

    can I ask how "impaired" (seriously, I have no grasp of appropriate words today) her hearing is once it's enhanced with hearing aids?

    The problem is not so much the volume of sound as the quality of it. Her aids amplify sound in the speech range of pitches - but ALL sound in that range. She lacks the ability to focus on one particular voice and exclude others, and the ability to locate sound directionally. Some speech sounds such as s and f are very quiet and hard to pick up, yet change the meanings of words completely.

    The FM system channels the teacher's voice directly into the aids, allowing her to concentrate on that more easily than background noise - and school classrooms still aren't routinely being designed with good accoustics in mind.

    One of the things van Asch does with mainstream teachers is take them out to the school for a course and show them a DVD which simulates what a classroom sounds like to a child with hearing aids. They come back just about in tears.

    But there are also things like swimming - which she's naturally talented at, but almost impossible to coach verbally, because she has to take her aids out.

    Christchurch • Since Nov 2006 • 4650 posts Report Reply

  • Gareth Ward,

    Interesting, thanks Emma.

    The Sign production sounds excellent - exactly the sort of thing I'd like to take my son along to once he's older to show him how different people communicate.

    Auckland, NZ • Since Mar 2007 • 1727 posts Report Reply

  • Lucy Arnold,

    I went to Oliver Twist at van Asch last year and I thought it was such a great initiative - not least because I understand it brought together members of the wider deaf community including deaf students from hearing schools, not just van Asch. And it must be an interesting challenge to present a production that appeals to a both non-hearing and hearing audience.

    Christchurch • Since Nov 2007 • 1 posts Report Reply

  • Deborah,

    and school classrooms still aren't routinely being designed with good accoustics in mind.

    There's a hearing impaired child at my daughters' school, and his hearing is remarkably improved in classrooms with sound proofing. And of course, the sound proofed classrooms are much, much better for the other children too. The state government pays for each classroom the lad is in to be upgraded, so the principal has moved him around as many physical classrooms as she possibly can.

    A great post, Emma.

    New Lynn • Since Nov 2006 • 1445 posts Report Reply

  • Don Christie,

    if you're going to give people bad news, and you have to give them important information as well, write it down.

    That made me laugh, the right way, I hope.

    At least you were not also having to translate the information from, say, Spanish (which has a fine public health system I might add).

    Wellington • Since Nov 2006 • 1645 posts Report Reply

  • Zippy Gonzales,

    Thanks for an excellent post, Emma. Deafness can lead to a rich and colourful inner narrative, and the cicadas are never annoying. I wrote some of my own deaf experience here.

    Wellington • Since Nov 2006 • 186 posts Report Reply

  • Hannah,

    My brother is profoundly deaf, born in 1964, affected by the Rubella epidemic of the year before. My family was living in Whangarei when he was diagnosed, around 3years old. Being deaf explained all sorts of behaviour, like screaming hysterically when the nice young doctor swooped on him from behind while talking to him - my brother had no idea it was coming, so was justifiably scared.

    When we shifted back to Auckland it was to live in Kelston near the deaf school. From what my mother says, back then, everyone at School for Deaf was expected to speak. Sign language was not allowed in the classroom. Children who signed had to sit on their hands.

    Hearing aids at that stage were the size of cell phones, kept in the shirt pocket, with a cord to the ear plugs. My brother stopped wearing them because it got in the way of playing, and it only may the few noises he could hear louder (only a few of the hairs in the inner ear grew) and not actually increase the legibility.

    It was partly due to that epidemic that things changed, partly because there were so many more deaf than usual, and also because the disease was indiscriminate of the victims. Not just poor people were having deaf babies, but professional, literate, educated parents did. And they stood up and fought for their rights to have sign language recognised as a separate language and part of the culture that was necessary for the deaf.

    Expectations changed - parents who were told they should be thankful their daughter could work in the supermarket after leaving school turned around and said that if her siblings could go to university, then why can't she?

    Now as adults, there is a crucial shortage of interpreters. I think they get 10 hours per year and that would need to cover doctors, lawyers, weddings, visit to the school to talk about the kids progress etc. The advent of faxes and then texting made a huge difference in incorporating deaf into society. A section of our community who had previously ignored all telecommincation devices became avid uptakers of the new technology, which I don't think the Telco's had thought about, or expected.

    And just think, it took 40 years for sign language, to move from out of the deaf schools and become an official language in this country.

    Auckland • Since Feb 2009 • 15 posts Report Reply

  • Jackie Clark,

    Unfortunately, I know exactly what you mean.
    here was a point at which the doctor's voice receded, becoming inaudible under a white sea of shock. He was telling us quite important things, but no matter how hard I tried I couldn't hear a word he said.

    Oh yes. The writing things down is important, and I always advise people to take a nonfamily member, or someone suitably objective, as well. so that what the doctor actually says is noted accurately by someone. Cos let's face it, if you can remain congniscent whilst your world crumbles a little, then there's something wrong, somewhere.

    She was naturally so pretty and clever and talented that she's been given an extra load to carry, just to make it fair on everyone else.

    Fantastic. Love that. You know, life is shit sometimes but there are people who seem to live without major trauma. I can't see but that a charmed life must be so limiting. And I have met people who live those sort of lives, and generally, you know, they are very lacking - im empathy, in spirit, in humour. Those who do it hard recognise easy when they see it.

    Mt Eden, Auckland • Since Nov 2006 • 3136 posts Report Reply

  • Islander,

    Jackie, life is shit a *lot* of the time, but other than that, you're absolutely right. I've met a lot of people round the world, and the ones who have it easy-easy are...shallow. And they expect to always have it easy (and, covertly, think there is something wrong/bad/deserving-of-their-fate about those who dont.)

    Adding to the 'writing things down'- my nurse sisters advise in those sort of circumstances, as well (because not everyone has a partner/support person)
    *having your cellphone on record
    *asking for a hospital support person (most of the major hospitals have 'em) to be with you before anything like that is conveyed, and
    *having the medical people send you a written copy of the diagnosis/prognosis (or asking your hospital/other support person to request it.
    In A&E or an ICU this can be difficult, but it *can* be arranged.

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • Tony Parker,

    That was the beginning of a long, fraught journey for our family. We fought with teachers who didn’t want to use the microphone for her FM system. We fought a long and ultimately unsuccessful battle to retain her itinerant hours. We fought to get IEP meetings scheduled, and for ENT and audiology appointments. Everything that should have been hers by right, we had to fight for.

    As a teacher this reaction from teachers and schools annoys me. It's like they are putting the school first and the child second.

    Napier • Since Nov 2008 • 232 posts Report Reply

  • Zippy Gonzales,

    Funny you mention Milan, Giovanni. From Languages of New Zealand (VUP):

    For the NZSL community, the year 1880 is a landmark for two reasons. Firstly, in that year, hearing teachers of the Deaf at an international congress in Milan resolved to universally reject the use of sign languages which had been used previously in many educational institutions for the Deaf - in many cases by Deaf teachers. The first government school for the Deaf in New Zealand also opened in 1880, and in keeping with the 'modern' thinking crystallised in the Milan resolution which professed 'the incontestable superiority of speech over signs', signing was excluded from the classrooms of New Zealand schools for the Deaf from their founding in 1880 until 1979.

    -Written by Rachel McKee and Graeme Kennedy

    Wellington • Since Nov 2006 • 186 posts Report Reply

  • Lucy Stewart,

    Thanks for that post, Emma; it was extremely moving as well as being an interesting look at a problem I've never had to think very much about, not know anyone hearing-impaired or deaf. I've seen interpreters in classes a few times, but that's it.

    In regards to Sign, I remember being taught the alphabet in Brownies, these many years ago (I don't remember why.) It seems to me that this could be a simple step to opening communication up more; yes, it's laborious, but at least it allows something, and I still remember at least some of it, which implies it's easy to remember. Add that to a few basic greetings and questions, and it wouldn't take too long while providing people with an opening.

    That, and I totally agree about the bar.

    Wellington • Since Nov 2006 • 2105 posts Report Reply

  • Jackie Clark,

    Add that to a few basic greetings and questions, and it wouldn't take too long while providing people with an opening.

    Interestingly enough,signing works really well with babies. I had a friend who, 15 years ago, used it with her children - after they were about 8 mths or so - and it was very successful. They signed when they were hungry, when they had had enough, when their nappies were full, how they were feeling etc. I thought it was fantastic - seemed to limit the amount of temper tantrums too.

    Mt Eden, Auckland • Since Nov 2006 • 3136 posts Report Reply

  • Sacha,

    Thanks Emma, you traveller you. Too tired to think straight now so will come back tomorrow. Love to your family.

    Ak • Since May 2008 • 19685 posts Report Reply

  • Zippy Gonzales,

    I think NZSL has a lot to offer stroke victims. Different areas of the brain are used to conceptualise and gesture comapared with language and speech.

    Wellington • Since Nov 2006 • 186 posts Report Reply

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