Category Archives: disability

Wheelchair ramps to get …online?

We all know that navigating public spaces in a wheelchair can be difficult, if not impossible, without ramps. As we move more into the online space, the ramp issues fall away, but the visually impaired now get access blocked by unconsidered design steps.

The online platform is largely visual and, thanks to innovative geeks and coders, there are fantastic software programmes and Apps to access this space on audio. …that is, if the developers comply to accessibility guidelines. Safari browser has a reader button that cuts out all images so only text is visible. This is useful for screen reading aids, but is often overwhelming for low vision or dyslexic readers. Text enlarging programmes are expensive, require training and need continuous upgrades. 

Many totally blind users access text online using open source or purchased text to speech software. If one is new to blindness, it takes time, opportunity and money to learn the necessary skills to access basic word processing technology. It is a mission, but not impossible. 

Whilst I am grateful for organisations that provide such services, my heart lies with low vision users, who make up over 90% of the visually impaired people in South Africa…many of whom are seniors. They can see too much to learn Braille and see too little to read large print. 

People with central vision loss, or macular degeneration, usually navigate the physical environment using landmarks and peripheral visual clues. E.g I walk 3 blocks and then turn left at the funny tree, then I use the entrance just after the dustbin and walk down the corridor to the person behind the counter where the red chair is. This way, a person who cannot see signs or faces appears to have no vision problem. The same goes for navigating online. We look for ‘clues’. A white stripe at the top right corner is probably a search bar. We can see where the edit boxes are, but the fancy greyed out description of what to write, is elusive. On familiar Apps we press the 2nd blob of blue, or the top left edge to go back. Who knows what is actually written there. 

With fancier designs on screens and moving images on websites, it is increasingly difficult to actually read a new or unfamiliar site. Often the writing is over an image and many times the colour of the font is the same as parts of the image. This causes visual clutter and is very confusing. 

One in ten South Africans struggle with dyslexia and, similar to low vision, have confusing sensory input that causes frustration, and sometimes even hopelessness. One does not want to take away all the fun from web and App designers, but keeping the space inclusive for those who are text handicapped, will increase the users experience and likelihood of returning to that application. 

Simple, logical and user friendly colour-coded areas would make navigation much less stressful for more people than you would think. 

Banks, public services and transport networks could really do with being more aware of the needs of people with sensory processing issues by considering sound-scaping, landmarking and simplifying, increasing contrast and colour coding to include the text handicapped. Who would not want 5 million more satisfied customers? 

 If reading is a right, then I trust that my writing this is a worthwhile read.  

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Electric Books

Oh, my word!

Words create. Grouped together they form ideas, clarify concepts and uncover emotions. They can be breaking or healing, creating or destroying. Words, like single. little bristles on a hand crafted paintbrush, gather together in choreographed groups to curve, colour and create images that appear uniquely in every reader’s mind. Being able to see them, read them aloud, digest them and allow us to continuously form new thoughts, and so,‘in my book’ (excuse the pun) are a basic human right.

Recently my son drove me to the local library to pick up an audio book from the rather limited selection. AS we walked in I was overcome by the nostalgic smell of old books – a blend of dust, leather and tobacco…with a faint whiff of old style floor polish. It instantly raised the memory of my grandfathers study. I sniffed the air and reminisced aloud. He too, was yanked into memory lane by the smell of the pages, mindful of the joy of choosing childhood favourites that opened new worlds of adventures.

Tables of old library books filled the foyer and people of all ages, shapes and sizes were scanning through the treasures in search of those classic gems.

Acrid jealousy hung in my nostrils as I grieved the loss of being able to read a book. The fleeting emotion of self pity wafted over my heart with the loneliness of not being able to join this assortment of people enjoying the hunt.

Then I took my thoughts in hand shooed them towards thankfulness. It is a privilege to live in thees modern times where technology gives me access to electric books.

My cell phone does not quite have the same memory jolting scent (yet) but I do , with some double – tapping and poking around, get to listen some great books. Scan reader apps, and a little more effort, also allow me access to ordinary books and, for those with the privilege, there are some excellent audio libraries online.

My recent introduction to artificial intelligence, gives me much hope that the advance of technology will once again allow us blindies to put our noses back into old style books.

…and that’s not my last word on it.

Sunshine Surprise

It was a cold, crisp Friday morning as I pulled on my gloves and headed down our sunny driveway to start my day. I had a spring in my step as I headed into the sunrise with all the joys of a new day playing hopefully in my minds eye. Our complex was peaceful and I presumed all residents were out an about, so the “hello” from the shadow bumped me right off my rails. I let out a whoop, quickly followed by a laugh and I think my neighbour got a bigger fright than I did.

Oh, the joys of low vision and not being able to see anything in a shadow!

We both recovered with friendly apologies and explanations…and now he knows that my mobility cane is not just an optional accessory.

Low vision awareness, happena one awkward moment at a time.

How we see it

  • My latest read (which for me means : my latest listen) is a new York Times bestseller by Rachel Hollis called Girl wash your face. I did not picked it our from an exclusive bookstore because of my intense need for ‘self -help’, but because it is free on Overdrive if you are a member of the South African Library for the Blind. I find nothing more relaxing than a well narrated story, whatever it is about.. I was merrily listening along to her insights whilst cooking supper when I heard her say something to this affect, “Whilst you are not in control of what life throws at you, you are in control of your fight. The traumatic stuff that happened to you in your life may not be your fault, but it is in your power to take responsibility for it.”

    I found this so empowering. Yay finally someone gave me permission to be in control…not of what happens, but of how I am going to let it affect me, grow me and shape me!I started to mill over how this statement could be helpful in forming my thoughts about inherited diseases and, my favourite blog topic, living with ongoing loss. We have all had things go wrong in our lives. Life is unfair. (I don’t know who made us think it shouldn’t be). You are not in control of what happens. It is being done to you and, surely someone is to blame? IT’s not fair!!

    The controller

    For many years, my way of dealing with sight loss was to do something to be in control. I thought that by controlling the world around me, that I would feel in control … through leading, achieving, competing, inspiring, … all of which can be good things, but the motive was to cover my pain, to dress up my fears in a brave armour of capability. Praise for the armour straightened the divide between my shriveled, terrified inside ‘me’ and the brave, fearless exterior ‘me’. Eventually the pack of cards has to come down and it is usually the family that get the cards flung into their worlds… so they will then makeup their own little lies about themselves to be able to cope – ‘oh, my pain can’t be as bad as mommy’s’, ‘at least I am not losing my sight’ and, ‘I should be so grateful I didn’t get breast cancer’. What a wonderful way to fiddle with the pain-meter so that you underplay your real feelings and put a little misbelief in there – what pain? Be careful , this thing could explode!

    What I actually needed to control was my response to loss – to change the way I see it.

    So often we compare our ‘wounds’ and either think, “well it’s not as bad as what happened to Jill” or, “what I went through is much worse than Jack so no one would understand me”.

    My wise (give a little space for humanity) and patient husband is involved in helping people break shame off their lives. He has an annoyingly accurate phrase, ‘it is not fair to compare’. He has observed that one person may have experienced extremely violent abuse and another may have remembered a scary boy at school look at them weirdly, but both will pick up pain and make an ‘untruth’ in their brains to help them make this ok. Well, who is in charge of the pain-meter? Who do we blame for it’s existence? Who exaggerates or underplays the calibration?

    Only I can change me

    Another brain smacker form Rachels book – went something like this,”What if you changed your thinking about what happened to you, to the idea that this has happed for you?”

    Buzz, hmm, huh, clink, wha?

    If Stargardts disease happened for me, then maybe my purpose in life can only be fulfilled if I have low vision. Maybe this degenerative disease is the exact catalyst I have needed to press me into a way of seeing that can open up other ways to perceive life and relationships and culture? It has inspired me to search for understanding how a Loving Creator and a genetic mutation can live in harmony. (Article coming soon). This disability enables me to taste wine and identify the butter creaminess, it equips me to hear the level of the liquid being poured into my cup or be aware of the atmosphere in a room.

    I find it so refreshing to have my thinking challenged. The problem is, I cannot do this alone. It is only by allowing other people’s ideas into my current thoughts, letting these ideas make me a little uncomfortable, that I can bounce them around in my head looking for existing points of reference, experience and beliefs and then choosing whether to allow the change or spurn it outright. When these thoughts have existed for years as plasters over a childhood pain, it is particularly unnerving. It is so interesting how we play games with ourselves without even knowing it. I so want to catch myself out! An old saying, ‘the heart is deceitful above all things’ is a wise word. If you think it is-not, you may have fallen prey to its tactics. Anyway, I have a suspicious feeling that my so called ‘heart’ is actually hiding between my ears.

    So today I decided to pull the rip-chord on free falling anxious thoughts and adjust my own pain-meter by just being grateful, present and mindful of my immediate surroundings – to enjoy the blurry view from where I am today! I opened myself to all the things I can be grateful for …the high pitched zing of my desktop magnifier, the smell of washing liquid on my clothes, the purr of traffic far away, the feeling of the carpet under my bare feet. I am in control of my response to my thoughts right now.

    What choice is fully in your court today? Who are you allowing to adjust your pain-meter today?

    P.S. Thanks to Rachel Hollis for her honest and inspiring book and thanks to SALB for adding this to the latest catalogue.

    Cane and able

    Cane and able … not the story of the original rival siblings, but one also involving pride and internal conflict.

    I recently had an unexpected trip to Johannesburg. There was little time to prepare during a busy day and , it was only when my husband and I were standing still on the ‘skellylators’ (our family word for escalators) that I began to think about this trip – body still and mind begins to move.

    I realised that I was traveling alone. No securing husband, just me and my faithful, rather battered white cane.

    Usually, when I go on a solo adventure, I mentally visualise the places I am going to and the colors of shops, the landmarks and the likely course of action. This time I was just there unexpectedly and had to ‘go with the flow’. When I feel vulnerable I make an effort to embrace my weakness and know that I am never alone. God is with me always. That morning I read from an ancient letter, “Let your gentleness be evident to all, for the Lord is near you …and the peace that passes all understanding will guard your heart and mind” . Boy I needed that peace, so decided to just be gentle and ask whoever I met whenever I needed it.

    I checked in online, but went to the counter anyway to find out which gate I needed to find for boarding. the lady asked if I needed assistance and I automatically said, “no”. The thought of sitting in a wheelchair when my legs are perfectly healthy seemed like a false pretense. (Will think more about this for the future). I also enjoy the adrenalin rush of finding my own way.

    I would never travel without my mobility cane. Whilst it is a symbol of blindness and someone needing help (why din’t I get the assistance offered?) , it frees me to do stupid things and to ask stupid questions like, “ is this gate 7?” Whilst standing under a bright blue number I also get into unexpected conversations with interesting people I would otherwise never meet.

    I became very aware of the surroundings for future reference. For example, in the SA airports the bathroom signs are round and bright yellow. I still can’t see which one is for who (although our law allows you to choose your gender anyway) and could not distinguish the disability one. My cane gave me permission to ask for directions to the disabled loo. Some folk falter before answering, thinking that this is only for wheelchairs (I had this conversation in the queue with the girl who had directed me earlier) , but can you imagine being in a large noisy bathroom with sounds of hand dryers, flushing loos and intercom announcements and trying to hear which door has opened and which cubicle is free. The disabled loo – which is probably very able (unless it is blocked) – is either free or not . A much simpler option for the vision impaired.

    When joining a queue for boarding I looked for the brightest bag or shirt and tucked myself in behind that person. As long as they kept moving in the direction I needed to go, I was fine. At one stage the blue bag that I was following had to veer left to board through the front door of the plane and I had to veer right to board from the rear door. I walked slowly until I spotted another colourful blob to follow. (I think he was quite amused when I asked him if I could follow his bright shirt.)

    There might come a day when it becomes too stressful to follow moving blobs and blurs of landmarks, but until then… my cane makes me able.

    Design de-sign

    I love entering an environment that is so cleverly designed that you feel safe and clearly directed, as if an usher were guiding you. Colours, light and acoustics all play a role in how a foyer or room makes you feel. I am not sure if sighted folk are aware of the subtle influence or whether I have just become more cognisant of these elements as my sight has deteriorated.

    Recently I went to an exhibition of the final interior design students at the BHC building in Cape Town. Entering an unfamiliar building is always a bit stressful for me, especially on a bright, sunny day, as my eyes take a while to adjust to the new lighting leaving me totally blind for a few minutes – hence the white cane.

    On this day, the well lit entrance eased me into the foyer where I was greeted, not by a butler, but by a wide yellow walkway that immediately surprised me and filled me with joy…. maybe a yellow brick road association. The pathway (if that’s what you call it in an indoor setting) began wide and seemed to gather us up and then, it’s flowing lines swayed us towards the front desk. The colour even continued up the desk creating a sense that it was awaiting our greeting. In theme, it was in fact attended by a very sunny lady welcoming us to enjoy the exhibition. At first I couldn’t work out why I felt so safe in a new space . I love the folk I was with and was celebrating their daughter’s talent (who was named top student the following day….brag, brag), but I don’t think I have ever found an unknown space so low vision friendly. The design of the flooring actually guided us along unconsciously … clever, social engineering. I love it.

    This kind of design would be so useful for something like a customer service desk in large retail stores. Many people don’t read actual signs, but look for simple pictorial or visual cues to direct them. I love buildings where the tiles, doors and walls are an indication of where to go. Having only peripheral vision, I am very aware of this, especially in places where there are a lot of people moving in different directions … like auditoriums and bus stations. I feel less stressed when the way to a specific place is marked by the change in tiling or denoted by planter boxes or benches. Airports are my favourite (when they are designed well). Large groups of people form all languages and cultures use non-verbal clues as they find out where to go. I love it when there is a tastefully demarcated corridor from the disembarking shute to the conveyer belts where your luggage gets belched out and then the tiles lead you towards the exit.

    There is a particular part of a shopping centre in Cape Town that exhausts me, even on quiet days. The floor is so intricately patterned and the lights so busy, that I detour to avoid it completely. If I was a kid in that space I would play up and have a tantrum from sensory overload. My tolerance for shopping has short-circuited there twice. My family know about it so when we walk past there I just pull down my dark glasses from their almost-permanent perching place on my head, whip out my white cane and hold onto the nearest volunteer tricep until we get to a place where they can see the serenity of the clear line between the floor and the wall.

    I know that music and temperature subconsciously affect a person’s behavior, but until recently I had not noticed the impact of the visual cues.

    In these modern times I know there are certain standards for buildings being ‘accessible’ for persons with disability. There is wheelchair access, being the most important (cos you have to at least be able to get into the building), but I do think there is a lot more that can be tastefully done for making spaces more friendly for low vision folk. This would also include seniors and those with mental challenges who also like to get around as independently as possible.

    I really appreciate thoughtfully decorated public spaces that keep people moving in the right direction or waiting patiently with the least possible stress.

    Well done to the designers who have achieved this. Like the interiors, they are not just pretty facades, but clever subliminal experts.

    I am going …what?

    I am going … what?

    It’s hard to fill in the blank in that statement, ‘I’m going …’. The shock of hearing that you have a degenerative eye disease is enough to make you think you are dreaming.  Thoughts waft through your semi- conscious brain saying, “This is not happening to me“; “this only happens to people I don’t know “ or “I will wake up tomorrow and find out it was just a bad dream”. That word ‘Blind’ is terrifying to a sighted person.  And so begins the first stage of grieving – denial.  I love denial. It is like having permission to live in the cuckoo land of unreality. It works so well … at least for a while.

    I was in denial for years as I pretended and found tricks and clever ways to disguise the fact that I couldn’t see well at all (understatement!), and I let the submerged fear out by running and running and running some more .  In our own time we all go through the grieving process as anger comes short on the heels of denial (thumbs up to all loved ones who stand by us through that!).This is generally followed by fits of bargaining with ourselves and God or both – a good time to take up a contact sport.

    I found myself faced with questions about the value of my life that no ten-year-old should have to ask.  Now that I think of it, no one did ask for blindness – that treacherous ocean between sight and no sight that all VIP’s (visually impaired people) are forced to navigate. You have no choice about being there and as much as people are with you, they cannot extract you from the reality. It can be a lonely and also selfish time. The currents of depression, disappointment and self-pity threaten to suck you under and pull you along paths you don’t want to go, but eventually the acceptance spits you out and you can finally take a deep breath of relief and joy as you recognise that you are still you and will always be you!  You realise that you are okay, and when you wipe the salt out of your eyes you see, or rather, hear a whole community of thriving survivors cheering you on and suddenly you know you are not alone and it is not a shame to get help… it is actually fun.

    Find something that makes you tick and get involved, whether it is using your talents for fundraising for cures, awareness for prevention of blindness, support groups, sports, writing or motivational speaking. Your life itself can be a motivation and an eye-opener to others. If you have a degenerative disease you will go through more grieving, but there are plenty of people and great organisations to help you thrive.

    Let’s do this together.

    (Contact http://www.retinasa.org.za/ for more info on Genetic Inherited Retinal Diseases)