Category Archives: independant living

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.

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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.

I am going …what?

I am going … what?

It’s hard to fill in the blank in that statement, ‘I’m going …’. The shock of hearing that you have a degenerative eye disease is enough to make you think you are dreaming.  Thoughts waft through your semi- conscious brain saying, “This is not happening to me“; “this only happens to people I don’t know “ or “I will wake up tomorrow and find out it was just a bad dream”. That word ‘Blind’ is terrifying to a sighted person.  And so begins the first stage of grieving – denial.  I love denial. It is like having permission to live in the cuckoo land of unreality. It works so well … at least for a while.

I was in denial for years as I pretended and found tricks and clever ways to disguise the fact that I couldn’t see well at all (understatement!), and I let the submerged fear out by running and running and running some more .  In our own time we all go through the grieving process as anger comes short on the heels of denial (thumbs up to all loved ones who stand by us through that!).This is generally followed by fits of bargaining with ourselves and God or both – a good time to take up a contact sport.

I found myself faced with questions about the value of my life that no ten-year-old should have to ask.  Now that I think of it, no one did ask for blindness – that treacherous ocean between sight and no sight that all VIP’s (visually impaired people) are forced to navigate. You have no choice about being there and as much as people are with you, they cannot extract you from the reality. It can be a lonely and also selfish time. The currents of depression, disappointment and self-pity threaten to suck you under and pull you along paths you don’t want to go, but eventually the acceptance spits you out and you can finally take a deep breath of relief and joy as you recognise that you are still you and will always be you!  You realise that you are okay, and when you wipe the salt out of your eyes you see, or rather, hear a whole community of thriving survivors cheering you on and suddenly you know you are not alone and it is not a shame to get help… it is actually fun.

Find something that makes you tick and get involved, whether it is using your talents for fundraising for cures, awareness for prevention of blindness, support groups, sports, writing or motivational speaking. Your life itself can be a motivation and an eye-opener to others. If you have a degenerative disease you will go through more grieving, but there are plenty of people and great organisations to help you thrive.

Let’s do this together.

 

Love, loss and Levi jeans

jeans

There is nothing more relaxing and calming than putting on your comfiest jeans. They are usually the oldest and softest, bearing rips, patches, paint and other scars that hold memories and reminders that life is an adventurous journey. They are best worn with slippers and accompanied by a good book and a warm drink. We seldom wear these in public, especially if we are meeting people   for the first time. First impressions are important, but are only a glimpse of a person’s whole life journey. They can be misleading at times. So, my spaghetti brain (every thought touches every other thought) related this to how relaxing it is to be with people who don’t appear perfect.  Perfection has its place in the beauty of music, fashion, sports and mathematics, but it is a bit unhelpful in relationships.  This got me thinking about the strength of being real with our weaknesses.

“My power is made perfect in your weakness”- God himself.

Just as love conquers strife and forgiveness is sweeter than revenge, so is vulnerability a key to strength.
I have learned that being open with my weaknesses allows an opportunity for others to feel strong and, asking for appropriate help empowers me. No matter how hard, I tried to be independent; it was only when I admitted my need for help and got the skills to cope with my vision struggles, than I found real independence. Thanks to the professionals, at Helen Keller Low vision services, I got the freedom to move around independently even on public transport.

Asking for help takes courage as it can seem that we have failed. I know that family members can feel frustrated when they see us struggling, as they know that if we just asked for help then everyone is happier. I get that we need to be determined and persevering, but, if we don’t acknowledge our weakness, the frustration can easily become anger (at ourselves) or even aggression. Asking for help is not a failure. Being honest with our pain is helpful for everyone.

It cannot be easy to live with a person who appears to have ‘no need for help –no weaknesses‘. Hats off to all friends and relations of super- strong, perfect people. If a person is so independent and self –sufficient, without a gap, then how do you love them?  Softness can triumph over perfection as it opens an opportunity to value others and transact with humility, kindness and appreciation.

In the process of embracing my blips and blemishes and it is no easy process (especially for an A type personality), I have become less stressed and, in a way, more able. I am more comfortable in the worn jeans of my inability which opens up opportunity to ask for help and make someone else feel trusted and valuable. It’s a bit like letting an acquaintance come into your house through the back door and asking them to turn the kettle on. It makes them feel like family.

chair 2

For me, old jeans are an allegory of a life of loss, laughter and love… far more satisfying than clean-cut lines of pristine perfection. I love them so much that I restored an old wing back chair with the family’s old jeans and it is my favourite place to sit with a cup of tea, snuggled by the life journeys of my loved ones …and the scratchings of our naughty kitty!

‘Let the weak say I am strong’

(Thanks to Botha and Budler editors)

An angel a day

photo-1459179214099-4bb3cc48e6c3This morning I woke up to another ordinary day. How boring.  I decided to live it with my eyes wide open looking for a new hope, a new person to meet or something ordinary to see in a new way so that it could be an extraordinary day with something interesting to remember in it.

 I took the taxi to Durbanville village as it is more than half way to the aqua aerobics class. At 8 am the taxi rank was a buzz and we all poured out of the vehicles escaping the confines of our stuffy tin cans, flooding the streets with bustling bodies heading in different directions. As I was negotiating the shadows and steps that led onto the sidewalk, a lady wearing a white blouse and navy slacks walked slowly ahead of me. I decided to follow her as she was walking my pace and it is easy to follow a monochrome top.  She saw my white cane and asked if I was okay. I greeted her, noticed the scrubs and asked if she was in the medical field. She is an assistant in a local pharmacy and we worked out we were heading in the same direction. We spent 5 minutes walking and talking together, and she didn’t mind me holding onto her shoulder as we crossed various roads and driveways. What a joy to meet such a positive, beautiful lady. I pray every time I travel on public transport, asking God to designate a ‘traffic angel’ for me. She was it. We parted near the gym and so, by 8.20 am, this could no longer be called ‘just another day’.

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.

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iSight or iSee

iSight or iSee

 

isightI recently attended a mobility training course to learn how to get around more independently as a visually impaired person. It required that I learned how to use a mobility cane – an extra-long cane with a rotating golf ball at the tip (so you get extra notice when you are about to fall into a cover-stolen manhole) as opposed to a symbol cane, a shorter stick which merely reminds others that you are a person who has full permission to act slightly strangely at times (like using a magnifier to see a till slip or walking past a friend without greeting them).

Shortly after this, a close friend of mine found an iPad that had been dropped in the street.  In her good citizen quest to find the owner she had to make a trip to the iStore in Canal walk. That day I was feeling down about a health issue, and was pondering on how precious life is.  So when the opportunity arose I grabbed the chance to get out, enjoy time with a friend, changed my plans and offered to go along for the drive.

I took along my new cane and was excited to try out my fresh skills in an unfamiliar environment.   I felt really free just walking from the car into the building without putting strain on my always confusing vision.  We found the relevant shop and, bolstered by my new found confidence, I asked her if she was up to a bit of fun. She giggled and said , “Go for it”, so I held onto her elbow, kept my shades on and she led the way to the counter at the back of the store where two attendants were waiting . I asked, “Is this the iStore? “when the chap said yes, I announced politely, “I would like to buy some eyes”.
There was a serious and awkward silence and then we burst out laughing.  The guys then joined in – I think very relieved at not having to make an appropriate response. We eventually got onto our real errand.

I was reminded that life with a disability is not as tragic as a life where you cannot see hope. There is no option to buy ‘iSight’, but there is always an option to choose how ‘iSee’.

P.S.I admire all things Apple and, in my opinion, an iPhone is a brilliantly helpful assistive device for any blind or blindish person… even without using the accessibility functions.

P.P.S. Apologies for any emotional trauma caused to the iStore staff.