Hope from the shadows

I am not sure how you like to negotiate milestones in your life, like a birthday, anniversary or new year. For me, it is always a time to stop, look back and be grateful; notice where I am now and ponder the hope between now and blessed eternity. As I sat here and quietened my soul, I became aware of the old painting on the wall behind my reading magnifier. Whist I can’t actually see it, I know what it depicts.

The painting is a view from within an old country church. There is a baptismal font on the left of a doorway and a large gothic door standing open, revealing a view to an antechamber with a bench and another door leading into the graveyard garden. I can’t make out much on the painting as it is very dark, gloomy and predominantly in shadow. I can almost smell the dusty dankness of old wood and cold stone. 

Today my eyes were drawn to the brightest line on the canvas. It is where the sun’s rays catch the top edge of the threshold. I gazed at it, more pondering than seeing. My brain was still thick with sleep allowing the image to relax into me before forming its relevance into two clear thoughts. 

Firstly, this is a step that makes me feel safe. One with a clear shadow defining it. When I walk about, I orientate myself according to the shadows. The sun shining obliquely onto an obstacle, provides the biggest contrast in tone and thus, marking an anchor point for my ever-moving blind spots. Shadows, for me, are securing. They allow me to determine the shape and size of an object and free me to move without fear of falling. 

The second idea trailed naturally behind. In my journey of life, the biggest shadows have become the clearest landmarks, when I open myself to the light of God. Here, as I write this, I find myself, looking to that peaceful garden and a lure to step into the antechamber of my life. A transient place for preparation and contemplation where we meet others who are coming and going on life’s journey. 

In 2020, the darkness of a pandemic has provided a delineating shadow that has made us all contemplate life’s journey. It has been a defining year, a year of clarity – that 2020 vision we so glibly declared on old year’s eve. It has defined what is really important in life. A glaring understanding of our mortality and the opportunity to adjust ourselves as we walk, with greater commonality, towards the hope of a new season. 

This brief interaction between me, my God and a step on a painting, has been a gift to me todayLook out for yours.

An image of the painting described in the article.
A painting by Ann Hammon

Kitchen for Seeing Hands

After response for re-blogging Kathy’s last post, I thought to add this one too. It gives useful information about the utensils and accessories that help anyone to navigate the kitchen safely so that all focus can go on the people enjoying food and time together.

Interior Disability Design Guide

‘The kitchen is the heart of the home.’
Kitchen design key requirements are to meet functional needs according to logical workflows. The starting point when designing any kitchen is to position the fridge, stove, and sink in a workable triangle. Remember the one and half meter distance rule between electrical outlets and sink/water.
Consider these sub-task processes in a kitchen.

-Unpacking food after shopping
-Heating up food
-Refuse and recycling

-Food preparation- Access to food, utensils, equipment, water,
-Serving a meal/distance to carry food
-Storage of household cleaning and ironing equipment

-Tea/coffee/cold drink preparation
-Cleaning up/washing up/putting away dishes
-Cell/mobile/technology charging station

These tasks are required for all people utilising a kitchen for daily tasks, but how can the kitchen be made better for people with low vision? There are four main headings to consider: Colour, lighting, touch (haptic), and hearing (audio). Not forgetting two important senses, those of smell…

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Planning a Kitchen for Visually Impaired People

If ever you get the opportunity to revamp your kitchen, many of these tips will prove valuable, even if you have perfect vision.

Interior Disability Design Guide

A kitchen is a mini factory and requires thoughtful functional planning. The kitchen is planned in the same way for a visually able person, but with a few additional design requirements and understanding. Visually impaired people are intuitive and adaptable to learn how to work/operate in an environment and have their own personal preferences to consider. The first layout decision is positioning the triangle of stove to sink to fridge zone, according to the available electrical and plumbing services. Each of these points on the work triangle require adjacent workspace.

The plan is an upside down U shape. On the left hand side is the cleaning zone shown in yellow. Top left to center including walk in pantry, fridge and vegatable drawers is the Zone for Consumables, shaded in green. Top right is the Preparation area and storage of non-consumables, shaded in magenta. Center right is the cooking zone with the stove and the pots in pale orange colour. The Dining counter is shaded in blue.
Plan showing functional zones

Kitchen design elements that will benefit people with low vision or visual challenges.

• Continuous counter-top height allows the user to slide bowls/pots/items along the surface to reduce handling mishaps.
• Counter material choices- Corian (Composite solid surfacing material) is the best choice, laminated surface is the next most suitable choice. Marble, or granite are the…

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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.