Tag Archives: independent living

Refreshing journey – cane, lines and ‘le-man aid’.

Yes, a play on words of my favourite cocktail from my miscreant youth. Now it is my favourite way to get around – use my white cane, line up with fellow commuters and depend on le – man aid, help from strangers, so I can go wherever I feel like it …ON MY OWN.

As many of you LOVIS (low vision sufferers) will know, it is wonderful to have family and friend support for … just about everything, but I love to give my concerned others a break at times and get to live a little on the edge. Being a bit of an adrenalin junkie, I get buoyed by the adventure of putting myself at the mercy of strangers and depending on the kindness which I believe is in the heart of everyone. Yes, I may bump into a serial criminal – who I believe is just a very hurt human, who never got a safe enough environment to help them through their pain – and, yes, I admit, I do pray and ask the Lord of Life to protect and guide me. My family know, and joke about, my designated ‘guardian traffic angel’ to protect me from being run over and they occasionally ask me if I can put in a quick request for these services to be rendered to them to get a break in the traffic!

Background

I come from a privileged upbringing where owning a private vehicle is a necessity and public transport from the northern suburbs of Cape Town can be seen as a daunting unfamiliar mission.

The story – One day to UCT for one meeting.

My husband dropped me off at the Golden Arrow bus stop early in the morning. I met my first travel buddy in the line. She had the incorrect small change and knew that the driver could not break a R200 so early in the morning, so I got to add in the couple of rands to get her ticket. It started a great conversation about ‘paying it forward’ (a must-see movie classic). She also told me she was getting off at the place I wanted to go. She told me the driver stops between official stops to let her out. What are the chances that that was exactly near the staircase I wanted to use to head to the MyCiti bus-station.

I always use my white cane when I am on my own. Physically I could survive without it, but the stress of trying to figure out where to go or who I may literally bump into, and the embarrassment of looking like an idiot – like when I walked boldly towards a door that had a big ‘use next entrance’ sign on it and I wondered why the handle didn’t work – as I shoved an pulled at it. My cane gives me permission to do weird stuff, it drastically reduces my stress, gives me permission to ask for help, without giving long explanations, and is a kindness I afford myself.

I got off at the un-stop and joined the throng of pedestrians streaming headlong into the bowels of the bus station like ants into an underground ant-nest. I knew where there were machines for checking how much money was on my card, but I knew I didn’t know how to work them. I just joined the line and then, close to the front of the queue, I asked the person behind me (travel buddy 2) if they could help. He was a friendly Nigerian student on his way to college. He showed me how the card readers worked and told me it didn’t matter which way up the card was … another relief as I needed to use the card at every entrance and exit point.

In the bus station, the marshal told me where to go. The paving guides in the MyCiti Terminus are up to international standards and so I was easily able to get to the right platform using my stick in the rutted grooves and my feet on the stipples. I do wish, however, that there were more color contrasts, or even color coding, to clarify the functional areas. When I began to look a bit lost, as I could not see the platform number, a little girl and her brother (travel buddies 3 and 4) asked if they could help. They confirmed that I was on the right platform, but many busses used it. They would not leave me by myself, so I let them take me past the line of people to the official usher at the gate. I waited with her and she made sure I got onto the right bus.

As we bumped along somewhere near District Six I asked the lady next to me (travel buddy 5) where exactly we were. She announced, “Coronationville” and we got chatting. She was a domestic worker who was so grateful for her work and the family who she obviously loved like her own. She proudly told me all about ‘her’ children and how wonderfully they were doing. She had so much gratitude and satisfaction in her heart that she literally bubbled hope.

I hopped off the bus at the Cape Town society for the blind as it was the closest bus stop to the university (for non-students). After a cup of coffee and checking emails, I took an Uber to the campus. The driver was very protective and was reluctant to let me go (travel buddy 6) on my own, until I showed him the Lazarillo App that told me exactly where I was and what the names of the buildings were.

After a couple more meetings and greetings with helpful people, biddies 7 and 8, I got to my appointment. Interestingly, on that floor of the building the corridors were an off-white color and all the doors were painted green … very low vision friendly, yay! So when someone told me that the loo was the first door on the right, I felt comfortable that I could find it on my own. Actually, it was not the toilet. The loo was the only door not painted a color … camouflaged in-house out house!

After our TEDI meeting (google it) I hitched a lift with a colleague (not a stranger, so I can’t add a buddy number) to the busy Main Road and hopped out onto the pavement. After gathering my wits I held my index finger down in the signal for a minibus taxi. Well, the taxi stopped in the middle lane of traffic, the jockey got out, stopped the vehicles in the closest lane and came and fetched me by the hand to climb into the already full minibus. I told him where I wanted to get out so, about 10 minutes later, when we were driving in the right-hand lane, he spoke to the driver who then veered across 2 lanes of traffic and stopped to let me out. Once again, I was not left alone. The jockey (who deserves to be travel buddy 9) simultaneously stopped the oncoming traffic at a green light, grabbed a nearby unsuspecting pedestrian by the arm and told the guy to, “take this lady across the road”. He acted with so much cheek, daring and caring, that we were all laughing! The accosted Indian man who helped me across the road (travel buddy 10) happened to be going in the same direction to Cape Town Society for the Blind. So, whilst we negotiated the patch-work of pavements, potholes and driveways all the way to CTSB, we chatted about cane woven lampshades and about having things in our homes that have meaning. It was a delightful few minutes that left me feeling refreshed.

I had an hour to waste as the first Golden Arrow bus out of CT to Durbanville leaves the city at 3. So, I settled down for a big lunch at Cafe 45. (For local readers, you can get a fantastic, reasonably priced lunch of the day at CTSB in Salt River Road, Woodstock)

Just after 2pm I waited at the MyCiti bus stop to head back into the CBD.I was a bit anxious because I did not know when the next bus was supposed to arrive. There was a toll-free transport number on the bus shelter, which I was able to see in a zoomed-in photograph on my cellphone, but that day all I got was, “sorry, the number you have dialed is not available right now”. I can’t hail a bus ‘cos I can’t distinguish between buses, trucks and large noisy vehicles…so I made a quick request for my traffic angel. A lady arrived shortly thereafter (travel buddy 11). We got chatting about how she had taken off early from work and was heading into town. She hailed the bus when it came, and I got safely onto it.

Back at the terminus, I walked over the bridge to catch the Golden Arrow bus home. Once again, a friendly passenger (travel buddy 12) happened to be taking the same bus back to the northern suburbs so I did not need to hold out my large print A5 sign with the word BUS and the destination, DURBANVILLE, on it, (which, although necessary at times, does make me feel a bit odd). After solving our country’s leadership crisis with her, we got onto the bus. It was so full, I couldn’t find a seat. I said aloud, “I don’t want to sit on anyone’, and then travel buddy, lucky number 13, said, “There is space to sit here” as she reached for my hand and led me to sit next to her. I got into a conversation with this young lady as she asked about my sight. We landed up talking about her struggles at work, and this time, I got to be someone’s le-man aid.

What a lovely day! I feel proud to be a South African. There were so many good-hearted people from all walks of life helping me out in their ‘on the way moments’ of their lives. I am just one person, on one journey, on one day and yet I feel like I got to see the kindness inside of many hearts.

It is a privilege to be blind enough to see this.

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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.

    Eye deal iPhone

    Looking is not really my strong point (understatement), but looking for simple solutions is.

    Problem: Really bad eyesight

    Solution: iPhone

    Yes, the solution for-needing an electronic magnifier, was literally under my nose…almost on my nose!! Such is the posture that shortsightedness dictates. My iPhone had been merrily freeloading in my handbag like a lazy stowaway, until I discovered how brilliantly it can work … for a living.

    Now It works 15 hours a day, on minimum wage, and it is everything from a personal assistant, a talking watch, cab caller, story reader and an electronic magnifier. It is very polite and never complains. Paired with a bluetooth keyboard, it is also a word processor with built in, free screen reading software.

    It requires patience to learn how to handle this versatile creature, but the rewards of a mutually beneficial relationship outweighs the inevitable frustrations of a green apple ….user.

    Just one byte 😉 and you will be hooked.

    ….and live ‘appily’ ever after.

    Check out my first video and share with friends and family with really bad eyesight

    https://youtu.be/FFHbBpOcdvg

    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.

    Remember the school nurse?

    school-nurse

    Every second year in Primary School the department of education had a health official who would come to do a health check on every child to see that we were meeting our developmental milestones. In the junior years the boys and girls were lined up in our underwear to have our turn being prodded and poked. Once it

    was on the day that I did not wear a vest …. How embarrassing for me … and I felt so sorry for the boys having their check up in front of the girls.

    Eyes and ears were tested regularly which, in itself, was a good thing (when we could keep our tunics on).  The problem for me came in when I learned that I had a retinal degenerative disease in both eyes. My parents got me, and my 2 siblings, the best help from eye specialists, but there was nothing more to be done for us medically.  We just did our best to cope as well as we could in mainstream schooling. The teache

    rs were very helpful, my parents kept in communication with the school, but the school nurse was a differen

    t lady every time. I got tired of explaining that, “yes” I did know that I was very short-sighted and, “Yes” it was a serious condition. By the time I was in grade 6, I didn’t have the energy to discuss the whole thing from scratch. I quite enjoyed and also pitied the shocked concern from a well-meaning professional. In order to save them the trauma of breaking terrible news to a child and to save a very intense conversation, I just learned the eye chart off by heart. I got the giggles when I had to pretend to read and when she pointed to another place on the chart my friends had to whisper the first letter so that I would know which line to recite.

    In hindsight I don’t think this was helpful for accurate statistics for the health or education department

    ….in fact, a bit short sighted …but fun!  I am however grateful for the schools that accommodated me in what is now called inclusive education.

    In Matric many of us went to apply for teaching or nursing because it was a good way to get a study bursary and you were granted a job for 4 years afterwards. We went as a group  to the department of health and li

    ned up fully clad with our jars of ‘apple juice’ , said ,”Aaah” and did the ear and eye test with  the same school nurse that had visited us.  Unfortunately, I had forgotten the eye chart, so although I was fit and bright, I was denied access because I was disabled. I wasn’t’ put out about it then and so, with some scrimping and scraping from my parents, a financial windfall and a scholarship, I went on to do my BA Hons. It was only after working part time in a private school for a couple of years  that my headmaster fought, on principle (or should I say principal),  to get the Department to recognise me as a qualified teacher. I was grateful for the justice of his action.

    E  F  P  T  O  Z  L  P  E  D  P  E  C  F  D

    Silly Siri and other short-sighted sniggers

    oopsSiri me
    As many of you know, I can see very little detail and so I find Siri (the personal voice assistant on my iPhone) very useful….most of the time. A few weeks ago I was involved in helping organise an event management workshop.  As a colleague pointed out, the chairman of the organisation definitely needed the event management skills on offer as the biggest event of his life happened unexpectedly… three weeks early – the birth of his first child.
    As a result, I had a bit more responsibility than expected and promised to take a photo of the delegates alongside the banner of Retina South Africa.  After lunch my helpful, fully sighted husband took the pic on my phone – which was also a fun event … Have you ever tried to get a handful of us blind people looking at the camera at the same time? Have you ever seen a photographer trying to clap his hands and hold a camera still?  Anyhow, the required task was finally completed.  As the session began I quickly wanted to forward the picture to ‘the boss’. I asked Siri to put in a caption saying, “The Essential Event Management Workshop”. I pushed Send and then peered through my magnifying glass to see that all was in order. In distress, I shrieked aloud, interrupting the speaker who was just getting underway, and I read, “the sensual event management workshop. The place erupted as I quickly sent a voice WhatsApp saying,” Essential, essential, e-s-s-e-n-t-i-a-l”.
    Siri nearly got me into Siri-ous trouble.!

    P.S. congratulations to Manny and Shamiela on the birth of their little girl Aarya

    Mistaken identity
    The coldest weekend this winter coincided with a burst geyser and an extra family member in the house. We were all using one bathroom and all our hygiene products had gathered in a line along the basin edge like spectators, to watch the high speed water sport. . I reached for my face scrub in the blue and white bottle and felt the luxury of a thick cream on my cheeks. The lotion smelled unusual. After the chilly commotion I took the tube to inspect the contents under my reading camera… it was heel balm!

    Wakey, wakey
    Half asleep I staggered to the kitchen to make the early morning coffee. I placed the mugs on the counter and spooned granules into the first one… except that it was upside down and the coffee sprinkled all over my slippers and the floor. Is that why they call it ‘in-stand coffee?’

    A separate joke
    Albeit weak, I need to share my home– made joke that birthed itself out of my home-made yoghurt gone wrong.

    What did the cheese say to the curd?
    “No Whey!”