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?

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.

Loo-king for relief

One of the toughest things about travelling to other countries is that signage and placement of almost everything is unfamiliar. I have a weird obsession for interiors that make sense for the vision impaired, illiterate or people who do not like reading.

Design for inclusion of all types of abilities is a little more complex than one would initially think.

I came across this really great loo sign in Toronto airport. The size and contrast is perfect for people with tired eyes or low vision as well as including a small sign for those with tunnel vision who have little peripheral visual perception. One of the signs is low enough for little people, children and and those in a wheelchair.

I also found a long textured tile pathway in the middle of the walkway, which most sighted people would not even notice. It is a useful texture feedback guide underfoot for those of us who are not quite sure where to go, as the corridor is visually ‘cluttered’ with display stands, street restaurants and groups of travelers standing around. I found it a reassuring guide.

‘Looking out’ for inclusive design seems ironic for a VIP, but I am grateful to those architects who take the time and effort to make it happen.

Finding a loo, without too much trouble is a real relief!

Following clothes

This morning I walked from a bright, sunny quadrangle into a shadowy corridor that leads down a ramp, through a doorway, into a foyer. It takes a long time for my eyes to adjust to the change in light, but today was my lucky day. Two precious people were walking ahead of me and one was wearing a black and white striped skirt, a perfectly elegant landmark unknowingly escorting me through the narrow doorway.  

I did say thank you and, since I know her quite well, joked about the usefulness of  the vertical pedestrian crossing! We laughed together about the odd behavior required by people with confusing vision. It only then dawned on me that I have something to write about: the usefulness of following bright clothing, bags, prams, rolling suitcases and the like. 

Public spaces , and public transport, are often very difficult to navigate… without the public. Insufficient colour contrasts, lack of decor landmarks and complicated signage often make moving about alone quite trying.

Thank God for people.

Camouflage Carpet

We inherited a beautiful Persian carpet from relatives who immigrated. It is plush and colourful with a bold black background. We decided to put it into our bedroom and it is there that I discovered it’s mischievous, secret addiction. If I take off my slippers next to the bed, they are nowhere to be seen in the morning. I have lost shoes, cell phone chargers, handbags and even the dog on this carpet. It is only when I close my eyes and feel around the floor, or stand on a yelping pet that I know it is not really the camouflage carpet, but my inability to see detail. The surprises on the floor keep me chuckling.

Our next carpet will be monochrome!!

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.