Category Archives: disability

Illuminating Bathrooms

“It does not matter how many carrots you eat, you will face vision changes sometime in your life” Kathy Tinney, my friend, cheerleader and author of this post.

Even if you wear corrective specs, you are unlikely to be donning them when you are washing your face, shaving or putting on makeup. So these principles of design pertain to pretty much everyone.

As a person experienced in vision loss, I found it useful having a magnifying mirror on a collapsable extension arm attached to the wall. I could then bring it right up close to my face. It was attached in place where I could still have light onto my face , without any shadows.

Lighting/illuminating is a design element that contributes to making a bathroom safe to use, both for people with low vision and the elderly. …

Illuminating Bathrooms

Wonderfully Made…With a flaw?

A stylised image of a sapling in a triangle of soil I have a story about a tree that drastically changed the way I see myself and that helped me put my blindness into perspective. 

Back Ground

I was brought up in a family culture where, as children, we learned words from the Bible off by heart. There are some great verses, but one in particular was very disturbing for me. It’s in Psalm 139. A song written by King David, where he sings, “O Lord, You search me and you know me!” Then  he goes on about everything the Creator knows about him, which is really securing and comforting for me, until the part; “You knit me together in my mother’s womb, I praise You because I am fearfully and wonderfully made. Good grief! Did He know I had a genetic flaw in my ‘knitted’ flesh? How can a person with an inherited degenerative disease be ‘fearfully and wonderfully’ made? Is God a liar? Why is this not my experience? How can a supposedly loving Creator ‘knit’ me with an ingrained flaw? It’s not like my parents had any control of that. 

My Process

This was part of my identity struggle that I took years to put into words. I was scared of the answer in case I was deliberately created to have a factory flaw.  At some pivotal stage of emotional turmoil, probably triggered by some small incident or frustration of not being able to see, I got the courage to ask the hard question to get to the bottom of this. I literally said, “God, if you are alive and real and loving and you made me, then how come I got this disease? Show me, teach me.”

About a week later I was doing some gardening. I find that there is nothing quite as soothing as hard, physical labour that works up a sweat, for a person who is fighting within themselves, namely, me.  There was an area in our garden where nothing seemed to really grow well. It had full sun and got enough water and compost, so I was not sure why a special ‘birthday bush’ I had carefully planted there, had died! It was another symbol of a disappointment and an unexplained defect. We had previously planted a beautiful double-delight rose bush, specially transplanted from our previous home, there and it had also died. What was wrong with these plants?  Why did they not grow for me? The ‘injustice’ seemed to connect with something in my own story. I was upset and so decided to rip everything out of that patch. 

Once the dead roots of the little tree were hacked out, I energetically dug as deep as possible to get rid of this garden bed.  I was arm length into the hole when I came across some builders’ rubble, and a penlight battery.  It was rusted and leaky and had probably, inadvertently, been tossed out in a previous story of someone else’s life. I was so relieved to find the cause of the problem, it was not the plants that were defective , it was the soil. 

Buoyed with hope, I carefully scooped out another bucket of soil around where the battery had been. We added natural fertiliser and new soil. We went out and bought a beautiful leopard tree and planted it in that place. 

As I was working I had an ‘epiphany’ or, as Oprah would say, an ah-ha moment.  There was never a problem with the plants we had put there, it was a problem with the soil. I am ‘fearfully and wonderfully made’. There is nothing wrong with my spirit, the Jenny inside Jenny’s body. I am the plant and my body is just the soil, which happens to have 2 mutations in one gene. I am not my body, I am a spirit, with a soul in a body. What a relief! I found this revelation so profound, that it gave me a fresh foundation from which to look at my life,and my value as a human being. 

In Charge Versus In Control 

This incident scrambled my belief system, as I thought The Creator was in control of everything on earth. Well, now I believe, The Creator is in charge, but not in control. What is the difference? 

Have you ever been in charge of a project, and something goes wrong? Is it your fault? Is it helpful to blame? What action did you take to work with the situation? 

Just because you are in charge, does not mean you are in control. 

None of us are in control of ‘the soil’ in which we are planted. Our bodies, our skin colour, the families we are born into, are all part of the mystery of life. We did not choose our DNA, but we can choose how to respond to what we have been given. We may have been given an earthly ‘bad card’, but we can choose how to play it in a way that positively contributes to the next generation. As for the factory flaw, that was never in the mind of The Creator, it was a weakness in the soil, the genetic material from generations past – that part of us that returns to dust when we die.  

It’s been hard for my parents, who have had to face the reality of passing on a mutation, even though they had no idea it was there. We all have genetic mutations and idiosyncrasies. Even a perfect human specimen is not more valuable than one who has come through illness or accident with a lasting impact. It is the sacred, human spirit, the part we call life, that carries value. 

My conclusion

Wheelchair ramps to get …online?

Diagonal view of a text file on a tablet.

Showing text on a digital device

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.  

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

  • A person holding a picture frame through which they can see a hang glider in the sky.

  • 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.