Tag Archives: Blindness

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‘    

Friends and Remedies

It always amazes me the remedies that people use to try to cure their ailments. When I had the “shunt headaches” that wouldn’t budge, someone suggested that I put some pieces of raw potato on my forehead, (apparently it’s a sure-fire cure). Nothing else was working so I tried it, but alas it did no good which is a shame. A kilo of potatoes is so much cheaper than a kilo of painkillers.

 

After I eventually lost my eyesight and had gone through all of the subsequent procedures to fix the cause, a family friend came to me with a jar of Holy Water that she had gotten from her local church. She advised me to dab some on my eyes each night before going to sleep because this would help me to restore my sight. I did it for a while, (hey it was worth a try) and in the more than 6 years since, I have recovered some of my sight. But I am not sure what (if any) role the holy water played in this.

 

Perhaps the most bizarre “remedy” that has been suggested to me to improve my sight though, was to wear a scarf.

 

I was invited to a prayer meeting/healing session which started innocently enough. Music began and it was actually a hymn that I recognized thanks to many years in the school choir. But when the music stopped the congregation did not. They kept right on singing although now not everyone was singing the same song. In fact, some people weren’t singing real words at all. Come to think of it, the same thing happened at the end of the “Hail Mary” and the “Our Father” prayers too.

 

It appeared that somehow I had found myself at a Charismatic meeting. I had always thought charisma was meant to be endearing. I didn’t find this endearing, I found it weird. But we were just getting warmed up…

 

With the prayer portion of the evening over it was now time for some healing. The priest went through a few different types of ailments (i.e. heart condition, stomach complaints etc.) and anyone who suffered from that ailment was called forward. He placed his hand on the sufferers forehead, muttered something (again in the mystery language) and they fell backwards onto the floor. One woman even began to cry, although perhaps this is because she hurt herself when she fell.

 

Then people with vision impairments and/or blindness were called forward and the friend who had invited me tried to get me to go up. I love her dearly and respect her enormously but there was no way I was going anywhere near that altar. I have enough trouble staying upright as it is. I didn’t need someone to push me over thank you very much!

 

I could sense that she was a tad disappointed and I did feel a twinge of guilt. That was until I noticed her go up to the altar herself and whisper something to the priest. “Oh no” I thought, “She’s bringing him here”. It seemed that like it or not I was going to end up on the floor. I considered laying down then and there to cut out the middle man. But as I pondered this she came striding back toward me without him. Phew!

 

Then she handed me the scarf she had been wearing. I had seen her wear it often and I knew it was her favourite. She told me she had asked for it to be blessed and that she was giving it to me to keep me safe and healthy. I was touched.

 

I haven’t seen that particular friend in a few years, but I do still have that scarf. While I am not sure whether it is keeping me healthy, each time I look at it the scarf reminds me of how incredibly lucky I am to have so many wonderful friends who care about me.

 

XOXO

 

Sense and Disability

I have no idea what it was called but I once saw this movie that may or may not have starred Winona Ryder and Keanu Reeves. In this mysterious movie (mysterious because I can’t be sure it actually exists not because that was its genre. I can’t remember that either), the wide-eyed female lead is desperately in love with this handsome guy who just so happens to be blind.

 

Anyway in this one scene they were in a restaurant where she worked. For some reason she gave him a block of ice and told him that it was the colour blue. Then she gave him a hot piece of coal (and possibly third degree burns and told him that it was the colour red. Upon feeling the thing she gave him he “saw” the colours she was trying to show him (or at least he said he did to get into her pants).

 

It made me wonder if that could really work. Could you get an idea of a colour using other senses, even if you’ve never seen them before? Further, is it really true that your other senses are heightened when one of the senses is lost?

 

A common question posed to people who have lost their sight is “can you hear better now?” In my case, unfortunately not but I do have an insane sense of smell that I didn’t have before. Conversely, I have heard of cases where people who are looking for a specific address or building whilst driving have turned their radio down to help them see better. Surely this doesn’t work, does it? If it does perhaps I should remove my hearing-aid and visit an art gallery. I might get a lot more out of the art.

 

There is a saying that you eat with your eyes and I never quite understood it. How is that possible? Wouldn’t it obstruct your vision? I remember sitting down to one of the first meals I had eaten at home after going blind (from memory it was Spaghetti Bolognaise or similar). You would think that after a month of eating almost exclusively public hospital meals that this would be like going to Venice for Carnivale. But it wasn’t.

 

It was no reflection on the cooking, that was still as good as it had ever been and spaghetti bolognaise is one of my favourite things to eat. Yet for some reason I couldn’t enjoy the food in front of me like I used to. The same thing happened when eating Sushi (another favourite) and even chocolate cake. It didn’t stop me from eating it though!

 

At this time I was completely blind and eating consisted of me groping around on my plate until I stabbed something with my fork that was edible (my own form of hunting and gathering). I began to ponder, just as you are deterred from eating food that does not look appealing, is the desire to eat something diminished when you can’t see what is on the plate?

 

Not according to The Scientific American.

 

Apparently the way that the food looks (and presumably whether you can see it) does not affect the taste of it and the taste buds do not react based on whether you like the look of what you are eating or not. That only affects your perception of it.

 

So why did the enjoyment of the food improve as I regained some of my sight?

 

I am not a scientist but as I couldn’t actually see what I was putting into my mouth (or anything else) I was getting no visual stimuli. Perhaps the fact that I was so bored was what made the foods so boring.

 

Move over Marie Curie, I’m coming through!

 

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

A Whale of a Time

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A tip for tour operators: When there are evil people (such as myself) about, don’t make claims on your website such as “We guarantee you see whales or your next tour is free.”  As soon as I read this the little devil on my shoulder began rubbing her hands together. I probably won’t see any whales. I am legally blind (insert maniacal laugh here).

As we sat on the boardwalk waiting to board we (or rather my brother Geoff) spotted a pair of dolphins frolicking in the harbour. Ordinarily I would have been quite excited about this but today I was slightly distracted. There was a delicious smell of bacon wafting through the air and it was making me hungry even though I had just had breakfast. “Pigs are friends not food” I reminded myself.

The sun was shining, there was a gentle breeze and the ocean was calm. Perfect whale watching conditions. We boarded the Sea Eagle (although given we were in Fremantle perhaps calling it the Sea Docker would have been more fitting), en route to the “humpback highway” in the Indian Ocean off the Western Australian coast.

The journey from the warmer waters of the Kimberley (taken from September to November each year) is apparently the longest migration route in the Southern Hemisphere and we were headed to a very popular rest stop for the whales (who said Perth was dullsville?). Hopes were high for a definite sighting.

We had only been at the rest stop for mere minutes but already a whale had been spotted in the distance.  The throng rushed to the viewing platform to get the best view. The whale leapt out of the water. The crowd gasped in amazement and a flurry of cameras went off around me. But I saw nothing.  Then another whale was spotted and again the crowd ooh’d and aah’d and again, I saw nothing.

By this stage I was beginning to feel a bit despondent. There seemed to be this awesome experience that everyone else was having and to be honest, I felt a tad left out. Even my inner Pollyanna who reminded me how nice it was being on the water on such a lovely day couldn’t shake the feeling.

I suspect Geoff had picked up on this and decided to do something about it, as not long after this the captain (another Tom) invited us onto the bridge to watch from there. Not only was it much warmer in here but I also had a prime viewing position and exclusive commentary from the captain too.

I eagerly looked in the direction I was told and scoured the ocean for any sign of life. Whales are enormous; a baby whale weighs as much as a small car. Surely even I could see something that big!

Apparently I could. Suddenly my eyes clocked onto what I thought was a fin and I began to get excited.  But my bubble was quickly burst when I was told that what I was actually seeing was the sail of a yacht…oops.

Then a miracle occurred, I saw the surface of the water break and a REAL shiny black fin came out. It was a mother and her calf and as if she knew I had been waiting she rolled over in the water, splashed with her tail and even did a leap. A few seconds later a slightly smaller tail popped out too. Finally I had done it. I saw not one but two whales, there goes my free tour.

Not sure if I would go whale watching again. It seems like something that should fall into the “once in a lifetime” category.  Besides I am pretty sure the thrill I got from finally seeing them could possibly never be recreated.

It is another thing to tick off my bucket list and in the end I did have a whale of a time!

XOXO

Just Do It

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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

Friends, Romans, Countrymen lend me your Hearing Aids

Modern technology is a wonderful thing. Because of technology I can use a computer even though I can’t see what I’m doing, write this blog using dictation with only my voice and pay for things with just the wave of a card. This is a particularly dangerous one, especially when there are pretty handbags nearby desperately in need of a loving home.

Technology has also allowed me to hear. I am stone deaf in my left ear and in my right I have a hearing aid that does everything for me except make me breakfast. If down the track I decide I want surround sound I also have the option of getting a Cochlear Implant. This has been put on the backburner for the time being, but it’s good to know it is a possibility if I want it.

Although, sometimes technology isn’t my friend. Take for example the voiceover software on my iPhone. I’d be lost without it. It reads out my emails, my Facebook news and Twitter feeds, and it reads my text messages out to me. However, the content of such correspondence is often unpredictable and I could be anywhere when I get a text message. No one wants their boss to know how hammered they got on the weekend or to have their Grandma overhear how awesome their boyfriend thinks their bottom is!  Thank goodness for headphones!  Shame they’re not always handy though.

Then there’s that moment you get to your destination, your hearing aid battery goes flat unexpectedly and you don’t have a spare. A sinking feeling washes over you. It’s rather like the one you used to get when you hadn’t done your homework or the way you feel when you leave the house and discover you have accidently gone commando…I’m guessing.

You know you have two options. Leave immediately, not really an option considering you just spent 4 hours getting ready and  paid a king’s ransom in cab fare to get there. Or; nod, smile and pray that no one asks you a question.

Argh, first world problems!

XOXO