Tag Archive for RP

Myth Bust: This blind girl CAN shop!

Today I had a very rough encounter with a shop assistant. A very quizzical, judgemental encounter….. But rather than be negative, this got me thinking; unless you have a visual impairment or live within close proximity to someone who does, this may be a common misconception that anyone of my readers may also hold.

So here in a series of blogs I am going to look at busting some myths and misconceptions. Now as my blog is all about me (selfish I know!) what I write here works for me and is my point of view. Sight loss has a MAHOOSIVE variant in the many that it affects, so what works for me may not work for another. After all VIs (Visually Impaired) are unique Human beings with their own individual characteristics.

I personally love to shop! Muse through rails of clothes, feeling the different texture. I find some shops easier than others, I also have my staple ‘go to’ shops for my essentials.

When I trained with my guide dog (both of them) it was explained to me about how a dog works in certain environments. How a dog works in a supermarket for example is different to how they work in a clothes shop. And most of this is down to how we as humans move around in said shops.

Mostly because of how the shops themselves lay out their stock. A supermarket is quite regimented, with aisles and shelving. Where as clothes shops work with rails, displays and a more ‘hap-hazard’ movable approach.

So, when in a clothes shop I do not ‘work’ my guide dog Fizz. By this I mean I do not hold her harness handle and ask her to guide me around….. Manly because we wouldn’t get past the first row of clothes as the space between rails isn’t wide enough for Fizz to work properly!

So once inside a clothes store I will simply hold her lead, I will keep her on my left hand side and I will use my right hand to feel my way around the store, feeling out mostly for the ends of rails that could cause me issues if I bump them.

The stores I frequent regularly are used to me and Fizz, they even know that at times she will just lay down if I am spending too long looking at a section! After all she is a dog; she has no need or interest in clothes!

But when we go into a different shop (which doesn’t happen often) the other shoppers (as today) and the staff appear amazed by it.

Today’s encounter saw me being asked to leave. And this was because the store assistant believed that I was not VI and that my guide dog was just a pet. (Despite her harness and all her ‘uniform’ stating she is just that)

The store assistant had watched me move around, touching the clothes, but that my dog was just walking behind me. I did explain the main reason for this was because the space between the clothes was only just big enough for me to walk in, let alone Fizz to walk beside me.

I explained how I am trained with Fizz and how dropping harness means she doesn’t have to be responsible for trying to navigate in such an unnavigable space. To which the store assistant became very interested and was then asking questions out of interest not judgement.

Another point to make is that clothes shopping isn’t a rushed affair (not for me anyway) So I take my time, I can focus using what little sight I have left on navigating my way around. It’s not ideal and at times it doesn’t always work. But it is making the best of the situation.

For me, I prefer to shop alone for clothes, not be rushed or concerned with someone else getting bored or fed up with me. So this is how I work around it. It’s a quirk and it is following my guide dog training; which means I can’t be the only person who does this.

After all VIs shop, VIs go out alone and VIs above all else, have their own minds.

Personally I would not consider going clothes shopping using my long cane. As most clothes are hung on rails a cane could alert me to the floor being clear, but won’t alert me to the tops hanging from a rail (if the lighting isn’t right for me to see) And for this reason I do understand why some VIs prefer to shop with others.

So, I hope you have enjoyed this Mythe bust? Feel free to comment below on this subject or other myths you may have questions about.

Just over there

‘Over there’ is a world of myths and legends, often where ‘that way’ can be found. (Or so I am told)

It’s a place where as someone with a visual impairment upon asking for the location of something I have been directed to MANY times.

“It is a place I have never found !!”

Usually such explanation to a location comes with a wave of a hand or arm, but rarely any eye contact from the person giving the instruction.

Don’t get me wrong, there are times when such directions do come with eye contact, but due to other people or a counter my guide dog is often obscured.

I am more than happy to press the matter and ask for more detailed direction. And thankfully on most occasions it has been easily obtained.

But it reminds me of how we can all become so familiar with our environments that we forget that someone new (with or without sight-loss) may not find it so easy to navigate.

I know people get flustered giving directions; do they give it from their point of view or the person asking?

If it is a shop or business and you are the employee being asked for directions the easiest way to direct someone is to walk them there.

Asking if the person would like to take your arm, explaining to them when you are turning left or right and most importantly when you are walking through a doorway, even if the door is open.

I am thankful that Fizz will fall in behind someone guiding us and simply ‘follow’ but for me I like to have the verbal directions as it means that should the need arise I can find my own way if there is a next time.

Reflections

Photograph of Tee, Weston a grey t-shirt saying “climb on” stood in front of a black and white canvas of a misty hence in Greenwich Park

Photograph of Tee, Weston a grey t-shirt saying “climb on” stood in front of a black and white canvas of a misty hence in Greenwich ParkThis November it will be 10 years since I was registered SSI (Severly Sight aimpaired aka BLIND) it was the appointment with my consultant that EVERY seemed to change, yet at the very same time NOTHING changed.

What I mean by that is that my eye sight didn’t actually change at THAT appointment.  I  simply became aware of just how bad it was.

Having had my Nystagmus (involuntary eye movements) and having worn pretty strong glasses for as long as I can remember my sight had never been great.  But in terms of the distance I could see (I have always been short sighted) had changed very little.

Rightly or wrongly so; when I was in my early teens I had been discharged from the consultant at the hospital, where I was given into the care of my opticians.  With the strength of my prescription And it was through this team that in July 2008 they used their new camera equipment to try getting a photo of my retina.

My optician wasn’t happy with what she saw, but she couldn’t explain it to me as she explained it could simply be that with my eye movement the photograph wasn’t actually true.  So she referred me to the hospital for a thorough check up.

Having been rushed in as an emergency after the hospital were concerned I had detached my retina (a common issue that if caught early enough can be reversed) I discovered that this was not the case, the registrar discovered I had cataract in both eyes, I will always remember what she said;

With laser treatment we can remove them and that would actually improve your vision.

But as she was simply confirming I hadn’t detracted my retina, she didn’t actually comment on the fact that my retina wasn’t ‘complete’.

So, you can probably understand my total shock when I returned a few weeks later to see the consultant to be given the news of just how bad my sight was.

I did have cataracts (my left eye had been diagnosed when I was 12) But the laser surgery suggested wouldn’t be easy and would have very little affect at this time.  And actually with my retina dying away my sight would actually only get worse.

Many people ask me

How did you not realise you were going blind?

Its simple, the changes in my peripheral were suggested to be something that had been happening steadily for many many years, and as I only likely lost a small amount at a time I didn’t actually realise.

I did notice ‘little’ things after my daughter was born in 2006, like how I was bumping into things, like low level tables or benches.  But I put this down to ‘baby brain’

I had also noticed that it was taking me longer for my eyes to adjust to light changes; like walking indoors after being out in the bright sunshine, but because I had reaction lenses this went in-noticed as an actual change in my sight (as I assumed it was just the glasses)

So…… Reflections.

I have decided I want to celebrate this anniversary.  I want to acknowledge that as me I have changed from the person I was before.  It hasn’t always been happiness and celebrations, but I have tried to embrace my blindness (and now deafness)

It may sound like a cliche

But in these last ten years I have had so many amazing opportunities, so many doors open to me.  I want to move forward with me and celebrating the good seems the best way to do this.  I am human, I can’t be postmitive ALL THE TIME.  But in this instance I want to look for the good, rather than dwell on the bad.

But the question is (and this I hand over to you my readers) ….

How should I celebrate???

When Molly and Chris gave a Masterclass

Image of Members of the group sat around a large table with phones, iPads and other tech sat on the table with numerous cups of tea, coffee and water with Molly stood at the head of the table showing her iPad:

Would you think of a pair of glasses as a mobility aid?

When you see an item every day and used by everyone then it becomes ‘the norm’ and not seen as an aid to support someone with a disability.

There are many products that are designed to support those with disabilities, these include glasses, hearing aids, walking sticks, wheelchairs and even other everyday products like iPhones and iPads.

It may not seem like it to a person who has no sensory or motor disabilities, yet all apple products were designed with accessibility and intergration as their base principle.

There are obviously other computer operating systems, programmes and technologies available.  But as a Mac (made famous in a Mitchell & Webb sketch) which I have been ever since I studied at university; way back when Apple Macintosh was for everything design and Windows was for everything administrative.

I have spoken before of my liking for Apple products, and in this I am not alone.  Molly from The Molly Watt Trust is a big believer and user of Apple products, her charity have also helped to support and fund those with Ushers Syndrome by funding an Apple Watch programme as she herself had found its features so very beneficial.

As part of an Ushers Social and awareness weekend (The Weekend that almost wasn’t) Molly was going to give a presentation similar to that that she gives to large companies about accessibility and awareness.

Her work as a Keynote speaker and accessibility advisor sees her working alongside Chris from Sigma (https://www.wearesigma.com/) Among others.

Molly explained the way in which she made use of the accessibility on her iPad.  She spoke of the obvious ‘voice-over’ and how she didn’t use it, how she found ‘zoom’ and ‘speak screen’ more neneficial to her.

She spoke of how you could set you home button triple click to bring you a list of accessibility options.  Including how to use your camera as a magnifier.

These little ‘nuggets’ of information were some that I was aware of and some that I wasn’t.

Since the latest iOS update there was also a rather clever new accessibility feature called ‘smart invert’ this is where the screen and text are inverted in the colours used, but the p have photographs are not……. Savi g confusion with colours when looking at images.

Chris spoke of how accessibility is in the every day, how as I said at the start of this post , “ when something is used and seen every day it becomes the ‘norm’” and how the work he does with Sigma and Molly is about making that a reality.

Molly explained how she found “Hey Siri” a great help; although this was when she realised that another piece of technology she was used stopped the others in the room from heading the response.

You see, Molly wears ReSound hearing aids; hearing aids that stream her iPhone and iPad directly and clearly into her ears.  Just as if she were wearing headphones!

Molly’s work has seen her work with ReSound and it is through this work that I have followed her and learnt about the fantastic products that are available.

Molly and the work she does through her company Molly Watt Ltd is paving the way for those with sightless, Ushers and hearing loss.

This masterclass have me some fantastic information to work with, some new connections to talk to and more importantly new friends who enjoy similar struggles to me.

The session was just a snapshot of what Molly and Chris do when talking to big companies, where there is often very rarely anyone with additional needs in the audience.

But it was enough to make me feel confident that accessibility becoming part of ‘the notm’ Could be a reality in the not to far distant future.

Less than 5 degrees looks like…

A question I am regularly asked is “What can you see?”  It’s actually a tricky question to answer, because I can answer it medically (with percentages and terminology) or literally (I can see your face, but not the colour of your eyes!)

Facebook has been throwing around an image that may help.

My vision currently sits at just under 3 degrees (some call percent) central vision, with nystagmus (involuntary twitch) and a distance vision that is classed as ‘finger counting’ (I can’t even read the top letter of the eye chart, just fingers that the nurse holds up-as long as she does this against a contrasting background)

Complicated right?

The image that many friends have shared lately on Facebook is quite helpful:

Images shows visual field on a semi-circular diagram, breaking down the different parts of the view. With the centre 5% highlighted and standing out from the main diagram.

This diagram details what an eye can see while looking forward and focussing in on a spot or image, without moving the eyes or head the majority of people will have a good range of ‘far peripheral’

where as I have just the central vision (just 5 degrees of overall sight) and thus stands at less that 3 degrees for me.

Despite common misconception this doesn’t mean that the rest of my vision is black or dark, it just isn’t there.  Many RP (retinitis websites show photographs for a sighted person and for an RP sufferer.

Two images side by side, left image is of a lake with waterfall surrounded by autumnal trees. The right side of the image has all but a small proportion of the image blacked out, just showing he waterfall part along with the caption "view for someone with Retinitus Pigmentosa

They show the RP view of the same photograph with the outer area blacked out, many friends took these images literally I thought I saw a lot of black.

I can see the whole picture; only it takes concentration, scanning and an element of memory to get the same result.  Or what I believe to he the same result as someone without my eye condition.

 

Can you see me?

A friend asked me yesterday what I saw when I looked at her face in person not by looking at a photo.

We were sat only a coffee table width away from each other, so not far from each other.

As someone who has always had poor sight (although not as bad as it is now) I have no ‘normal’ memories of sight to refer to.

I usually explain it as. I can see the shadow of your eye, but not the colour or even the white in them.  I can see the darker colour of your mouth, but no detail or if you have food in your teeth.

 

But this doesn’t really help.

So, a quick look for an app at that App store and this is what I came up with.


A photograph of my face blurred to look the way I see it.

Can you see me?

It’s official, I am annoying !!

Last week saw me attend my 9 monthly checkup at Moorfields eye hospital.

My condition LCA is grouped in with RP, retinitis pigmentosa, as it includes many of the se characteristics like night blindness, loss of peripheral vision. With LCA – Labers Congenital Amarosa, I also suffer with myopia (severe short-sightedness) and nystagmus (involuntary eye movement that is continual)

I am now down to finger counting in both eyes, when I used to get the top line of the eye chart stood at half the distance in my rift eye.

Given that six years ago I was between the second and third line on the eye chart (depending on the letters)

I have an incredibly strong prescription lenses, which is what gives me the sight I explained above. Without any glasses it is purely light and colour I can see without holding something above the top of my nose!

Please don’t be reading this and feel sorry for me, my sight is what it is, yes it may be worse than most, but it is much better than some.

So, up at Moorfields for my nine monthly check, I have noticed many little issues in the past few months and with the puppy being off work, I was even more aware of differences from the last time I had used my cane like this.

The long and the short of it, after four hours seeing a consultant, an eye scanning team, a retinal photographer, a registra and then my Proffessor, I have an increase in my cataracts (but not enough that they would risk laser surgery with my nystagmus) I have more noticable ‘floaters’ parts of my retina that is moving around in the eye jelly, a deteriation of my peripheral.

I can no longer do the peripheral eye test where you stick your head in a white bowl like test machine, stare at the red dot in the middle and press the button when you see a green dot.

Now they use the images they get from the scans and photo’s to tell me about my percentages. I have a difference of 21% from eighteen months ago, which sounds significant, but when I have less than 10% periferal it is even more…. I am not a mathamatitain, but even I can work out that that is a lot.

The cataracts are causing everything to feel as if it is either darker than it used to be or is unbearably bright when I have been in a darker environment.

So, the main reason I go to Moorfields is because I am part of DNA study to help with genetics for RP and LCA. So far they have found and researched 14 different genes…… And then there is me!

I told the registra that I liked to be different, he said I wasn’t different I was annoying. He actually called me annoying.

But then the Prof came in to see me, telling me of another study that I could be part of, very simple blood sample is all they need. He reminded me that my condition was definately not ticking any of the right boxes at the moment and making his and the research teams work ever harder. But that at the same time, he still found my scans and photographs magical.

So, I am offically annoying.

And that is exactly what is now written in my hospital notes too !!!

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