Tag Archives: Deafness

Disability is not a Time Capsule

I interrupt this ignorant transmission to deliver an important public service announcement: I realise I have a disability but I’m not Peter Pan, I have grown up!

  

Ok, I am the height of an average ten-year-old so possibly that has thrown you but let me make this very clear.

 

My life as a disabled child was very confusing.  Most of my extended family refuse to acknowledge the fact that I had a disability, (apparently this was just too embarrassing). 

 

I remember one day sitting on the floor watching TV when suddenly my uncle appeared in front of me angry that I had ignored him. Apparently, he had been trying to get my attention, but as he was standing on my left (aka deaf) side and I was facing the TV, I didn’t notice him.  When I told him this, adding that this was part of my disability I was subjected to a lengthy telling off.   Actually, I was not disabled, just very rude.

 

Sadly, this is just the tip of the iceberg. I was never allowed to admit that I had a disability. But, I was never allowed to do what the other kids did because, “don’t you realise you can’t?”  Not surprisingly I developed an identity crisis and severe depression.

 

As I got older, this did not improve. In my late teens and early 20s (even though I was almost completely self-sufficient) I was still being treated like a toddler.

 

On one family occasion, I remember we were all eating roasted chestnuts. A different uncle was feeding said chestnuts to his toddler grandsons by inserting them directly into each child’s mouth one after the other.  Then next thing I know the same slobber-laden fingers were in my mouth too.  EWWWWW! 

 

I pulled away and told him I didn’t want any. But he could not understand why what he had done was inappropriate (I was 24). I struggled with this issue for many years. In the end, I realised that you can’t argue with stupid, and in order to preserve any remnants of my self-confidence I cut all ties with this side of the family.

 

A lot of people (myself included) suffered because of this decision and I felt a lot of guilt. But I have no regrets. I did what was the best for me for once. I know this was my family, and in their eyes, they were helping.  But this is not a good enough reason as it made me feel belittled and inadequate.

 

The problem wasn’t so much what they were doing but rather their disregard and lack of respect for me as a person. My dignity was never taken into account.

 

No one has the right to make you feel bad no matter what relationship they are to you. Your self-esteem and sense of self-worth are precious.  Guard them with your life. 

 

It is a big thing to cut ties with someone though, especially if they are family.  So, if possible, try and explain to them why what they are doing is causing you so much anguish. Sometimes, it will help and the problem will resolve itself. 

 

But if it doesn’t, know that you are not alone. I understand.

 

XOXO 

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The blind leading the blind: 10 tips for socialising with some who is visually impaired

Last week I covered socialising with someone who is hearing impaired. Then I remembered, I’m visually impaired too. What luck, another excuse for a blog.

 

I am lucky in that I have some sight (for what it’s worth), so for me, having a vision impairment isn’t really a hurdle when socialising. Not as much as the hearing impairment anyway.

 

It is irritating how clueless some people are though. So here are some things to keep in mind if you meet me:

1.   Your hand is invisible to me. I have no peripheral vision at all so holding out your hand to shake mine is useless.  If you want shake my hand just take it in yours. Just leaving your hand hanging in the air makes us both look stupid.

2.   Give me real directions. I can’t see where you’re pointing. Use “Left” and “Right”.

3.   Get out of my face. It’s unlikely that pushing something up against my nose will help so just don’t do it.

4.   Remember there are boundaries. I once had a women grab my hand and thrust it into her bosom in order to “show” me the chain she was wearing.  Computer says no!

5.   Warn me. In situations like the one above it would be nice if you gave me a heads up if you intend for me to grope you.  Otherwise it could end in tears. Yours, not mine.

6.   Excuse me. Having said that though, if I inadvertently get too friendly or bump into you while doing something else, I am eternally sorry.

7.   It’s not one size fits all. I think the “official” way to guide a visually-impaired person is by letting them grab your elbow. This doesn’t work for me. It doesn’t offer me enough stability. Don’t assume you know the “right” way I should do things. Find out what works for me.

8.   Be my mirror not my groomer. If I have something on my face, in my teeth or up my nose, tell me. Don’t take it upon yourself to fix it.

9.   Put it back. I am a neat freak. I can usually find things because I know where they live. I can walk around familiar places because I know where the “landmarks” are.  Don’t leave things out for me to trip on or re-arrange my stuff. It will only piss me off.

10.Tell me where you are. Sometimes you’re just a dis-embodied voice. So, tell me where you are and stay there so I can face your direction. It is very embarrassing when I realise that I have had an entire conversation with someone while facing a solid wall.

 

In terms of socialising it is ok to suggest a movie to someone who is blind. High-action low-dialogue movies such as “Pirates of the Caribbean” might not work well as they are hard to follow if you can’t see. But British comedies such as “Notting Hill” (not slap-stick) are great as are movies based on books as they are easy to follow.

 

Stand-up comedy and concerts are also helpful as there isn’t much to see.  And anything where multiple senses can be used such as parks and beaches etc. are excellent.

 

Although, if you are there with me be careful. It’s highly likely that I’ll confuse my left from my right and end up in the ocean.

 

XOXO‘    

Cochlear: The journey continues

 

 

I have now had my cochlear implant for a little over nine months and I thought it was about time to give everyone an update on my progress. 

 

You may remember that I had the device switched on in early April. I was able to recognise voices and some words almost immediately, which is apparently rare, especially for someone who has not had hearing in that ear for such a long time. But the journey was far from over.

 

I knew I would have to do some training of my new-found hearing in my left ear but I had no idea what that training would involve. Would I have to lift weights with my earlobe? Thankfully no. Turned out that the standard training is by listening to audiobooks. They gave me Anna Karenina (which I had never read) and instructed me to listen to the book on CD whilst following the story with the physical book in my hand. The idea is to match what it is that you are hearing with the book in front of you. It took me back to the 1990s where as a child I used to listen to the gingerbread man story on cassette tape while following along with the book. Only this one didn’t have an annoying chime that sounded every time you needed to turn the page.

 

I am legally blind and I couldn’t see the text in the book so this method did not work for me…

 

Then they gave me a book of exercises designed to help me learn to hear. For example, one exercise instructed me to repeat two words that sound very similar eg. duck and truck or Ben and sin. Problem was I had to find a willing participant to do the exercises with and because of a lack of volunteers/lack of time/I am just lazy this did not work for me either.   You can’t do these things without amassing a curious audience and between my embarrassment with that and the standard frustration of both parties when a parent tries to teach a child anything, (Dad was my volunteer) I gave up in a huff. 

 

Eventually I devised my own training regime. Because of my low vision I have the voice-over switched on to all my devices i.e. iPhone and iPad etc.  In doing any training exercise I had only my cochlear implant device on and not the hearing aid on the other side so when using these devices I could only work them using what I could hear from my implant. I also have an extensive library of audiobooks of my own, most of which I have now heard so many times I can recite off by heart. This mean that if I listen to them it is the same as if I was following them with a physical book. 

 

Once the device was switched on for the first time I had to attend weekly adjustment sessions for the first four weeks. Then every fortnight for the following few months and every three months after that. Each involved a type of hearing test which as well as measuring how much I could hear, also measured how well the nerves were reacting to the implant. Adjustments to things such as pitch and volume can then be made accordingly.

 

On the first day of having my implant switched on, I had a constant background noise that sounded as though I was receiving a transmission from space. I could hear the odd word or two but not hold a conversation and all words sounded as though they were being spoken to me from the bottom of a swimming pool. Now the transmission noise has disappeared (this is because my nerves are getting used to have anything else on the left side), I can identify more sounds and words and if I need to I can even hold a conversation. (all be it a slow and stilted one).  The words no longer sound as though they are coming from the pool. Now people just sound robotic. I also find it easier to be in noisy situations and I find it easier to participate in group conversations.

 

The actual device that sits on my left ear is a bit annoying though. I can’t fit it and the arm of my sunglasses on my ear at the same time, so often it’s just hanging from my head like a bizarre earing. The magnet under my skin ensures that it will not fall off. However if I flick my head forcefully enough it will go flying. I have done that the few times so far and it has resulted in my companion having to go and search for it in whatever shrubbery or clothes rack etc. that I happened to be standing next to. Miraculously I have not actually hit anyone with it yet.

 

There is still a lot of work to be done and the more I do the better the results that I will get. I am really happy with how it’s going so far and it has actually made my life easier already. I know there is debate over whether or not a cochlear implant is worth having. In my experience I think it is.

 

XOXO

 

Nina – Marie Butler

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The Fresh Princess of Cochlear

 

 

Now this is a story of about how my life got flipped, turned upside down. So I’d like to take a minute, just sit right there. I’ll tell you how they turned on my brand new cochlear (implant).

In Western Australia I was amazed, it sounded like I was getting a transmission from outer space.  Like getting a fax it wasn’t very cool. And the voices sounded like they were coming from the bottom of a pool.  Then a couple of sounds that were not understood started coming forward, I was feeling good.

They made some volume adjustments and the nerves began to stir. So this is what it’s like to have a working cochlear.  I grinned at my dad who was sitting quite near and I checked out the new hardware in the reflection of the mirror. If anything was heard it was still quite unclear but I thought at least now I have a switched on cochlear (implant).

We got back to the house not very late. And the doggies were barking. On my ear it did grate.  It will take lots of training till I finally get there. But so far I’m happy with my brand-new cochlear (implant).

Apologies to those fans of “The Fresh Prince of Belair”

 

XOXO

The Road to Cochlear

I always know I have a good surgeon when I walk into his office and everywhere I look there is memorabilia for the “Fremantle Dockers” (my favourite AFL team). If that wasn’t enough reassurance, how about the fact that when I asked if he did ear drum transplantation (a reference to Australian comedy “We Can Be Heroes”), He knew exactly what I meant (the answer was no by the way).

It helps that he comes highly recommended, but actually it is things such as TV preferences and being a fan of the right footy team that are really important to me when choosing who I will let cut me open. Hey, I have to have criteria!

I went to a quiz night a few weeks ago and I really enjoyed myself but I must admit I struggled. Not with the questions themselves, (did I mention we won?) but rather with hearing what they were.

Between the murmurs of other tables conferring, the clinking and rustling of snacks being removed from their containers and the very bad acoustics in the hall my one good ear couldn’t cope; there was just too much background noise. This time it wasn’t that I couldn’t hear, it was that I could hear too much. Sheesh! I was able to participate; I just had to have someone repeat every question directly into my ear which was a tad frustrating. I shouldn’t complain though. It makes a nice change from when I get an ear infection. When that happens I can’t hear anything at all.

I have come to the conclusion that there is only one thing for it. It’s time to get my cochlear implant!

Being assessed for eligibility to get a Cochlear implant is a very different experience. It is the only situation where being told I am profoundly deaf (in one ear) is actually a good thing.

It started with an interview which was very much like a first date. Except that it was in a clinic (I prefer a restaurant) and there was no chance I would get a kiss at the end of it. We talked about my life in general (family, work, social life and hobbies etc.). Then as we got more comfortable with each other the conversation turned to goals for the future and other matters of the heart. This may seem intrusive but the purpose of it was to see if I was going to make good use of the implant.

Then things got really weird. I was told to lie on the bed, (at least buy me dinner first!) And I was given a pair of glasses to put on. The glasses looked a lot like the spectacle/sunglasses combination popular in the 80’s. For some reason they made me think of “Skippy” from the sitcom “Growing Pains”. I’m pretty sure he had a pair.

So I was lying on the bed (wearing the glasses) and suddenly the technician shoved a hose into my ear that was blowing extremely cold air.  Next the cover of the glasses was pulled down which made the room go dark and I was asked to list as many girl’s names in alphabetical order as I could in a minute without stopping.

By this stage I was sure I was being punk’d but apparently I wasn’t. The cover on the glasses actually had a camera on it that was monitoring my eyes. When the cold air is blown into the ear the eyes are supposed to dart from side to side and the amount they do this gives an indication of how much balance a person has. The girl’s name thing was to distract me from the sensation of the air. My eyes didn’t move at all, which means that I have pretty much no balance. But I could have told them that!

Finally I was placed in a sound proof booth and asked to repeat the words that were being fed to me. This is to give them an indication of my level of speech recognition and understanding which can then be used for comparison after the implant is inserted. Allegedly I didn’t do too badly with this. That surprised me as the accent of the recorded voice was so strange that I wasn’t sure that what I was repeating were actual words.

Having jumped through all the hoops I am now able to get the implant itself. This is a simple day surgery where a magnet is placed under the skin behind the ear. Two weeks later the outer parts are fitted and the implant can be switched on. I am told this will all happen in February 2016.

Apparently when the implant is first switched on the sound is similar to a radio that is not quite tuned properly. So once they switch it on I will need to start the training to teach the nerves to interpret the sounds.

I guess in my constant quest for self improvement there is always room for some fine tuning.

XOXO

Your Questions Answered Part 1: Incontinentia Pigmenti & My Schooldays

Recently I have had lots of interesting questions from people wanting to know about me and how I do things. I put a call out to see if anyone else wanted to ask me anything promising to answer all questions put to me in a blog.

I got a surprisingly overwhelming response via email and on social media so I have decided to do them in instalments otherwise the blog will be longer than War and Peace.  I have grouped all similar questions together and may have paraphrased the actual questions.

So get yourself comfortable as I attempt to tell you everything you ever wanted to know about me and some things you didn’t!

What is wrong with you?

I have a condition called Incontinentia Pigmenti or IP. Never heard of it? Don’t worry, neither has anyone else. There are only about 1500 people with it worldwide and except in VERY rare cases only females can have it. One of my favourite things to do when going to hospital or meeting a new doctor for the first time is to casually mention that I have IP. They look at me as if I am speaking Klingon, it’s hilarious!

IP presents differently for each person but for me it is basically weak muscles (apparently I have 20% muscle capacity, hence the wobbling) and skin pigmentation.  Until I was about 12 I looked a lot like a Top Deck chocolate (sadly I haven’t got any photos of this). I was as white as a sheet from the front but at the back, I had solid brown pigmentation from the base of my neck to the top of my heels. Thankfully this has faded now but I still have a large collection of freckles on my face.

Some people with IP are partially or fully blind but my legal blindness (I have about 30% sight) isn’t related to my condition at all. It is as a result of the damage to my optic nerves caused when my shunt (a tube that runs from a ventricle in my brain to my peritoneum) blocked. This trapped the fluid in my head and caused there to be too much pressure squashing the nerves. When the shunt was replaced incorrectly I had a mini stroke (it sounds worse than it was and surprisingly was not painful). The extra damage from the stroke left me with a permanent visual impairment.

I am stone deaf on my left side caused by a problem with my ear (no-one actually knows what it was now) when I was 14. My right ear used to be good enough to do the work of both ears but these nerves were also damaged in the shunt debacle so now I wear a hearing aid.

The fact that I use a walking frame to get around and occasionally a wheelchair is just laziness.

What about school?

I am told that as a child I was very advanced. I started to speak at 6 months old and have never stopped.  As it was originally thought that I wouldn’t be able to communicate at all, I was given IQ tests from a very young age. As a result of these tests my parents were advised to put me into school as early as possible.  So, the year I turned 4 I was enrolled at kindy. This is the norm now but in 1988 it was not very common in Western Australia.

I went to a Jewish kindy (although I am Catholic) with “normal” children. I don’t remember much about this time but I do remember learning a lot about Jewish traditions and one day I even ended up in the local newspaper dressed as Queen Ester.

When I started primary school I was a very confident and precocious child. I had mostly hung out with adults until now and so I spoke like an adult and had a fondness for using un-necessarily big words. I think the other kids (and a few of the teachers) were unsure how to take me. I looked different and I spoke weirdly so I was a bit strange.  Adults may think little kids using big words is cute but other kids do not. I was often picked on for this habit and eventually I gave it up all together. I regret this now.

The rest of primary school went pretty smoothly considering. Of course there were a few school yard squabbles and the occasional friendship tested but overall I generally did what everyone else did (whether I liked it or not) albeit in my own special way.  When we played cricket I played too and used a runner and I almost always got a prime role in the school plays. My favourite was as the ghost in our dramatization of the Australian folk song Waltzing Matilda.

Everything was fairly normal. That was until the final year. For some reason which was never explained to me (although I never did get my pen licence so that may explain it) the school and the education department decided that I needed a laptop to help me. This was useless. Computers were not widely used at this point and so I didn’t know how to use it and neither did the teacher. Also I couldn’t touch type so everything took twice as long as it should have. I would have been better off with a stone and a chisel! The laptop also served to highlight that I was different from the other kids for the very first time.

As the year drew to a close and high school approached there was some concern about what to do with me now. It was suggested I go to a “special” high school for kids with special needs but I was having none of that. I wanted to go where all of my friends were going so that’s were I ended up.

I found high school pretty lonely at first. There was no one like me (not that I expected there to be) but I had started to recognise my limitations and was starting to feel a bit outcast. I had lots of friends but It might have been nice to have someone else in my situation to compare notes with.

I found walking from class to class difficult at times and was often late which I found very embarrassing. I was never reprimanded for this but it was not unheard of for me to sit by myself outside a classroom at recess or lunch just so I would be there on time.

At least I didn’t have to worry about the laptop making me stand out anymore. It had fried itself by the middle of year 8 and I didn’t get a replacement.

The realisation that I was different had made me a tad wary of other students and I found myself getting nervous at the beginning of the school year when new students arrived.  This was because I had encountered my first (and only) real bully. I am not sure why exactly I offended him but evidently I did and I was often treated to taunts and eventually physical violence by him. This stopped one day after my best friend at the time spotted him punch me and marched me (against my will) to tell a teacher which is what I should have done in the first place.

My later high school years were happy ones. I had a close group of friends (some of whom I still see regularly) and as there was more flexibility in the subjects available to you in years 11 and 12 I was able to focus more on what interested me.

We also had a campus to ourselves so I didn’t have to worry about an influx of brand new students each year and because the campus was smaller and I didn’t have to walk as far I could actually spend my breaks with my friends.

I don’t really believe the popular notion that your school years are the best of your life but there is no doubt that they have played a big part in shaping the person I am today. And yes, I am almost fully recovered from my 12 years of Catholic schooling.

Tune in next time for part 2: Assistive technology, accessibility and more…

XOXO

Just Do It

IMG_0367

I have not always been legally blind (a fact I often “forget” to mention when I tell someone that I used to drive), in fact I have had near perfect vision for most of my life. I was not always this hard of hearing or this wobbly either.

Yet before I went blind (aka before I turned 25) I didn’t really do much (other than work) at all. I went to the odd party and enjoyed the occasional holiday, but mostly I just sat in front of the telly; watching whatever was on and doing long stitches. For anyone who doesn’t know what a long stitch is, it’s basically paint by numbers with wool. Yes, I now have a lot of pretty pictures to hang but still I am fairly sure this time could have been better spent.

Last weekend I finally did a skydive (see post “I came, I saw, I skydived!”). Not sure if anyone was aware of that, I only mentioned it 2 or 3 (thousand) times! Skydiving hasn’t been a life-long ambition for me. More like a year-long one that blossomed after it was suggested to me by someone who I am sure really didn’t think I would do it, and who could blame him? There was a time when I didn’t think I would do it either.

I have had a lot of people congratulating me this week. They have been saying things like, “you’re braver than me” or “I don’t think I could do that” but I am here to tell you, yes you can!

I find myself wondering, if I had done it earlier and my eyesight and hearing were both still intact would I have enjoyed it even more?

There are so many things that I have now decided I would love to do but with my body the way it is  I really wouldn’t get much out of it.  I’m kicking myself for not realising this sooner. Still, there are lots of things I CAN do so I intend to do as many of them as possible and make the most of each experience.

Skydiving may not be your thing and that’s ok. A guy who was diving with me has just been swimming with white pointer sharks and was trying to convince me to do it too. NO WAY JOSE. I hate getting my hair wet, that and I can’t swim.

You never know where you will be tomorrow, next month or anytime in the future so my advice would be; if you can, do. And do it now!

Who knows? One day if I learn to swim or if I can get someone to piggyback me around in the water again (see post “I can’t swim! And other life lessons I’ve learnt this week) I might actually get up the courage to swim with the sharks.

In the words of Rob Schneider in pretty much every Adam Sandler film ever created, “you can do it!”

XOXO

 

P.S, if anyone does want to skydive please let me know. If I bring along 4 new victims I can do it again for free! LOL