World 2020: Welcome to disability. Can we help you?

Historically the weak, the lame and the blind are at the begging end of society. Familiar with loss shock, unfair limitations, loss without goal posts and usually finding acceptance and a new reality of finding some peace in the pain of it all. This is our normal. COVID has now made it yours too. Can we help you?

View of railway tracks through a crystal ball
See the way in an upside down world

Living through COVID has a lot more in common with disability. Everyone is facing loss of some Kind. For some it is unfortunately the loss of life itself. For most it is the loss of independence, loss of employment, ability to connect with others, inability to see faces or expressions behind masks (similar to early stage macular degeneration) and adapting to a whole new way of performing daily tasks. Everything takes a little longer. We are familiar with this.

The disabled community is made up of 3.2 Billion people worldwide. We are the largest minority group and hidden in every community, no matter what class race or creed. While the pandemic has made many things far harder for us physically, we are accustomed to  living with loss. For those of us with degenerative diseases this comes in perpetual cycles, like milestones of realisation when you struggle to do something today that you managed quite easily last month.  It is sad, but it’s ‘okay’ – it is our reality.  

That ‘okay’ means the process of getting to acceptance as quickly as possible so as to move on with emotional health. It is first the awareness that there is a loss, then identifying the feelings that go with that loss (the more specific the better), then the hardest part for me is actually feeling those feelings and staying with them, crying, talking or ranting with a chosen person who agrees to offer that safe place.  Then only, is it time to mop up, choose a helpful response and reach out to others in your community and ask for help or practical advice from others with your specific disability . There is always someone who has gone through something ahead of you.  No brownie points for doing loss alone. 

HereIn some ways, being part of a group of people with a common brokenness is really refreshing . No one has to pretend to be perfect or even coping. I rue the years I struggled using clever coping tricks so that no one would know I could not see properly. I avoided the emotional pain by partaking in every sport and risky activity as possible. I spent hours just running. See article:https://goingblindwithinsight.wordpress.com/2015/09/18/run-run-as-fast-as-you-can/

 It was exhausting trying to avoid the constant stress, anxiety and humiliation every day just to appear ‘normal’ (whatever that is) and avoid asking for help. 

Who said that asking for help is a weakness?  Why did I believe that for so many years?  And why is weakness such a big deal? We are all weak in something. We all need others so we can be strong together. We are designed for community. Perhaps COVID has toppled the towers of self importance and leveled the ground to make us aware of the importance of life, of relationships of just being human. 

Loss can attempt to wrestle our identity to the ground, especially  if we are known by what we can, or can’t, do. We are used to being called, ‘the guy in the wheelchair’ or ‘the lady with the white cane’ just as much as you may be used to being called ‘CEO’ or ’Manageress’. COVID may have erased your title, or reputation, but don’t let it erase you. We are all human spirits who have been given a name, usually by our parents. We had life before we could do anything and it is no less valuable now. No label  of ability or disability is more important than you. You are here, now for a reason. Search for it, find it. Someone needs you. 

As we navigate this strange time in  history, let’s forget our labels and be there for each other. Work is a privilege, we can all do something, whether we are paid for it in money or not. We all have something to give – even if it is kindness,  gratitude, paying for the groceries of the person in front of you in the queue or a disabled person offering to listen to the heart of someone who is new to facing this debilitating loss. 

What blindness has taught me is that it is not so important what we see, but how we see. Loss always looks backward. Fear looks ahead. To break both, we can be present. How? What can you be grateful for right now? Say thank you out loud… to God or the air or the cat! Now call or tell someone what you are grateful for, and your eyes will start to see hope, to see what you do have. 

Ask for the eyes of your heart to be opened and use your ability to do something random for someone else. 

May COVID un COV-er real life in us.

Inside autumn

Last Sunday morning I stepped outside the front door into the crisp, cool air of early autumn. It’s freshness cleared my nose of cosy warmth and I got a whiff of the ripe hibiscus flowers in our neighbor’s garden. As I tapped my cane down the road I became aware of the bird cries high above me and the sound of wings swishing as little flocks fluttered in formation in preparation for flying north.

Floral dresses  hanging on a rail.
A ‘hanging garden’ of floral prints

I love walking to our church early. Most people are tucked up warm in their beds so it seems as if I have the sounds and aromas of the changing season, all to myself under the vast blue sky. After meeting with a few folk for prayer, I sauntered into the noisy school hall where groups of chattering people gathered and flowed like flotsam on a stream, some sticking with the clumps and others breaking off to connect with the next group. Last Sunday morning I stepped outside the front door into the crisp, cool air of early autumn. It’s freshness cleared my nose of cosy warmth and I got a whiff of the ripe hibiscus flowers in our neighbor’s garden. As I walked down the road I became aware of the bird cries high above me and the sound of wings swishing as little flocks fluttered in formation in preparation for flying north.

The summer fashions have been so flowery this year. To me it looked like swirls and waves of floating leaves, bobbing blooms, twirling flowers and colliding colours as ladies greeted and turned with fragrant perfumes wafting lightly on the air after them as they made their way to their usual seats. The trousers and shirts stood more solidly like tree trunks stepping determinedly in straight lines, stopping to nod at other pillars of clothes.

I smiled to myself, grateful that I get to see this inside garden of flowing lives in an unusual way. I think that Seeing must sometimes get in the way of experiencing.

After COVID 19, my theme tune is, ‘when will I see you (this) again?’

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.

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.

Tongue in cheek and other mishaps

So one of the ways us ‘blindies’ get to manage tasks that require sight, is to use our tongues. As you and any damaged dental feature would know, tongues are independently intelligent, super curious seekers of adventure that can identify little ridges, gaps, holes and glitches. So, when my iPad is not at hand and my fingers are not managing to identify intricate detail, I give the task over to my tongue. It helps me find matching earrings, the eye of a needle, the type of screw or the hole in a bead.

So today I needed Andre to help me buy placing a blob of quick- drying Superglue on a little bracket to keep it in place. He put on his reading glasses (yes, we are that age) to do the job. The glue was not coming out, so I took the bottle out of his hand, put it in my mouth to feel the clogged spout and proceeded to bite off the plug of dried glue. As I pulled the bottle away I felt the glue on the tip of my tongue, the inside of my bottom lip and the back of my teeth. In terror of these all sticking together forever I bared my teeth and stuck out my tongue like a shrieking gargoyle until it all dried separately – not a pretty sight!

For future reference, the glue came off my tongue easily, it took about 5 minutes to wriggle the matting out of the inside of my lip (with a layer of skin), I eventually flossed some of the dried bits out of the gaps between my teeth and there is still glue on my fingers as I type.

I posted my mishap on a chat with other visually impaired friends thinking I was a bit weird. Well, one of the guys reads his credit card number with his tongue, others test batteries (shocking), read embossing on glass bottles, identify coins (after washing) and find reset buttons on watches and modems.

I know there is a Biblical reference about taming the tongue, but I am heading for training mine … to taste AND see!