Category Archives: education and vision impairment

Mindsets and jelly moulds

jelly mouldI was thinking about this word ‘mindset’ and how wonderfully it describes the foundational thoughts in our lives that bed themselves down and set, like concrete. They determine how we see life and are created and re-enforced by the values, the culture, and the experiences in our environment in which we grow up. I think that education is meant to challenge our mindsets and prod at the possibility that the world could be different to how we perceive it.

Changing our mindsets is much more difficult than changing our minds.

It is very comfortable and securing to do the same thing the same way everyday as it takes away the necessity to make a deliberate choice. Doing routine tasks in a new way can be very taxing and stressful. Some people even get upset or put out when someone sits in their usual seat at their favourite coffee shop or in church. Silly things that don’t have any real importance become a stabilising comfort to us. No wonder it is called ‘set in my ways’.

Changing our minds is like putting different flavours of jelly in a mould, but changing our mindset means we need to identify the mould and choose a more beneficial one.

Related to low vision     

It is for this reason that when a person starts losing their vision progressively, it takes a lot of emotional energy to carry on doing what they have always done, but in a new way. It is especially challenging for older folk as they have done the same things in the same way for so long. It is stressful and sometimes frustrating, but if you change your mindset by breaking up that foundation of understanding how life ought to be, the limitations are removed and each difficulty can be seen as a puzzle waiting to be solved. We need to be flexible in our expectations and open to creative solutions for seemingly insignificant tasks. One example is, trying to put toothpaste on a toothbrush….because that’s what we do twice a day (hopefully). For those who don’t know, you have to hold the brush so close to your face and it is difficult to aim the white paste onto the white bristles without flicking some into your eye. Why not just put the toothpaste straight into your mouth.

I was finding social interactions more and more stressful because my ability to see faces had deteriorated quite substantially over the previous four years and I had been bumping into things and ‘losing ‘ things a little more often than in the past. All my life I had tried to not stand out as being abnormal in any way. In hindsight, I was not doing myself or others any favours. I identified my mindset as: ‘fitting in is a way to look competent’, then I chose to change it to ‘who needs impressing? ‘I needed to address my own needs above what I thought others might think. This meant picking up my white symbol cane. It was difficult at first because I knew that people would respond to me according to their mindset towards a disabled person – avoidance because of lack of experience or fear of me being a beggar, pity and condescension or glorifying me as some sort of saint. I decided to go ahead anyway and if people see me out and about with my cane, identifying me as having vision problems, then maybe that can challenge their mindset as to what a vision impaired person is supposed to do…. and I just call it an on-the-go public awareness campaign. I appreciate my family supporting me in this community education.

I challenge other low vision sufferers to embrace their needs and set yourself free.

Happy setting

Advertisements

Run, run, as fast as you can …

In High School I discovered that I could run! Previously, the furthest and fastest I had ever run was about 300 meters – the distance from the Primary School to my house. That was the day I got to school and realised that my shorty pyjama trousers were sticking out below my school dress. I had to get home and back before the school bell rang. I thought this only happened in nightmares, but it was my first middle distance event.

Anyway, back to high school. My brother, who was a distance runner and my sister, who was a senior then, coaxed me into signing up for an 8km fun run. I did it because I was entering ‘big school’ and wanted to please them. I was the 5th girl home. Their girl friends on the athletics team were so proud of me and I had no choice but to join the cross country team. From then on I loved to run. It was a way to be out in nature, breathe fresh, Johannesburg traffic fumes and detox from my age appropriate teenage moodiness. Also, the faster I ran, the more my blind spots were covered and the more liberated I felt from tasks requiring visual acuity.

By then I knew that I had Macular Degeneration and was also trying to prove to myself , and my parents and teachers, that I could cope well enough to not have to enrol at a boarding school for the visually impaired. I was such a home bird; there was no way I was going to leave home. Denial suited me perfectly as facing loss is very painful and only for the mature (which I was not). Running became my escape …running from pending vision loss and running to cope with stress and running to achieve my own goals so that I would be seen as capable. It all sounds a bit like Forest Gump… “Run Jenny run”. Anyway, it was fun …

…until I was the first to finish the race. I had no one to follow and I could not see where the right chutes were for my age and category. It was embarrassing to sprint to the finish line and break the tape, only to be told that I was at the wrong finisher’s table: “you are not a senior boy”.cross country wide

I don’t know why I did not ask for help. I think my teachers thought I was pulling their leg that I could not see the signs. At least at Provincial level I was never first! There was always a bouncing, pony tail to follow.

Running opened the door for me to appreciate many beautiful parts of our country. There are secret gardens, green belts and forest trails tucked away in the middle of highveld cities and towns. Later I ran for EP (as it was called then) and so got to see beautiful parts of the Eastern Cape countryside – even racing in a team against the Old Apple Express steam train!

Through a particular running event I learned that achievement is very satisfying and gloriously addictive, but is not the key to feeling better about oneself and one’s value in society.

This significant race has been an allegory of my life. It was the final 1500m track event at the top 11 English schools’ meeting. I had won this event at every athletics meeting that season, so was under pressure to perform well and I anticipated breaking the record at this particular event. Those were the days when the good athletes wore spikes, but I never could get the hang of them and so ran barefoot – not quite as fast as Zola Budd! We ran as a team of 5 and each team had their own tactics. I was one of the targets to beat so we had our protective moves. There was a lot of tension and a bit of jostling at the start line, but finally we all got off on a sprint. Our pace setter was out front and I was immediately boxed in by two runners in front of me , two alongside me – one slightly ahead and one slightly behind – and someone on my heels. You get used to this kind of crowding and bumping each other, but I got a deliberate shoulder shove and as I faltered the girl behind me wearing spikes accidently (or maybe not) stepped on the back of my calf and left a long deep bloody scratch down to my heel. As I fell, I bailed out onto the outer lanes so I would not be trampled on. I got up and checked my leg. I was so mad!! By this time the others were out of my sight, I realised that I had not stepped out of the track and so could legally still continue the race. I decided then to finish as best I could. My indignation and sense of injustice and pain kicked me into high speed and I charged after the pack who was about 200m ahead. I cried and ran my guts out. I heard later that the whole school was on their feet cheering me on. It felt great passing the athletes one by one. I was so focussed on catching up to the next girl that I forgot to count the laps and I was relying on the bell ringer to announce the last lap. I only had one girl to pass.

She was about 10 meters in front of me so I paced myself to overtake her at the 300m mark. I didn’t realize that it was the end of the race until the girl in front of me stopped running at the finish line and the track official stepped out to stop me. He was very apologetic that they had forgotten to ring the bell. It was such a crescendo of mixed emotion – disappointment at being denied the chance to break the record, indignation at the injustice of the bell situation and pride at knowing that I had done my absolute best in the situation.Run 2

In my life race (as probably in yours too), I have been boxed in by vision loss, knocked down temporarily by breast cancer and even today, as I write this, I have been elbowed by the confirmation that my peripheral vision is also now affected. It sucks!

There is nothing like disappointment for figuring out what is really important in life. No trophy, medal or accolade can take the place of knowing deep down that you are valuable just because you are created alive and are cherished by a loving God.

I will get up and go on. I have a loving family and supportive friends who are cheering me on and I don’t care where I come in this race. It is a joy just to run it.

At band practise tonight we sang a song from Jesus culture “Your love never fails” and one verse made me think about this blog. Nothing can separate, Even as I run away, Your love never fails, I know I still make mistakes, But your mercies are new for me every day, Your love never fails”(Romans 8.35)

Join me -don’t give up!

… and where the heck is that gingerbread man?

‘On the ball ‘

I tried my hand at tennis when I was 10. I was good at all the individual skills like bouncing a ball on the racket, throwing the ball up for a serve and sprinting around the court, but returning a ball over the net was literally ‘hit and miss’. Not understanding that I had a vision problem, it puzzled me why I could not consistently get the ball onto the racket strings. It was as though my racket had no strings at all! I practiced at home against a wall and my friend across the road taught me a useful ball skills game called sevens that I thought would rectify my frustrations. I played it for hours on end and with little success on the tennis court. Later that summer I broke my arm and was quite relieved that I could not play tennis and I didn’t have to give up by choice.

For 2 years I unconsciously avoided ball sport in favour of gross motor skills and spent a lot of time upside down walking on my hands, climbing up trees, playing in the pool till the sun went down or careering around the suburb on a bicycle with friends. In those days TV only started at 7pm so being active was a good way to avoid homework. I have many fond memories of the antics we got up to (thanks to my friends at Rembrandt Park Primary School)

In standard four I tentatively signed up to play hockey – there were no strings on a hockey stick. I loved it! I played in a forward position so as long as the ball was on my stick close to my feet, or moving into my peripheral vision, I could generally see it and the goalposts were more of a peripheral vision thing anyway so I had an idea where they were. I was a little too successful for my own liking as I landed up being the only standard 4 girl, and not a confident one at that, in a team of standard 5‘s. The following year was much more fun as my friends were also in the team.

hockey

Initially I did not sign up for High School hockey. I was very fit from running (probably next blog) so when I took up hockey again 3 years later, I did well. I could not see the ball on the other side of the field, but by inference, the ‘people shaped smudges’ that moved the quickest was where the ball must be. I ran after anything that was white and moving on a green field. White fantail pigeons and wind swept litter were at risk! By this stage, my team mates would call my name before they passed the ball to me which was really helpful. In my Standard 9 year I made the Nuggets Schools Hockey team and landed up going on tour with strangers who knew nothing about my sight problem. That in itself was scary as I was really afraid of getting separated from the team. I never even went to the bathroom alone. . Oh Shucks, I wish I had been honest with them and myself. It was only when we played an evening game in Durban, on dry, brown grass under yellow floodlights with a yellow ball that I had to tell the coaches that I could not play because I could not see the ball. The coaches were annoyed and I think they felt betrayed that I had not told them about my eyesight problem before. If I had made them aware of this we may have been able to play with a red ball. The following year I did not even sign up for trials as the social stresses and explaining the situation was just too taxing for me.

Somehow, in my matric year, I was picked as captain for the first hockey team, but always had to ask the vice-captain where the opposing captain was so that we could do the coin toss – I couldn’t even see the ‘flipping’ coin!! It was super ridiculous!! How could my pretence have been so far from my reality?

Playing ball sport is still fun for me … especially if the ball is big, bold and moving across my vision! My love for sport was also the impetus for my studies and later employment. I even used the game called “sevens” in teaching ball skills to junior school children.  I have no regrets that I played ball sports, but only that I was not ‘on the ball’ enough about coping with the reality of my fading sight.

So, my message to any VIP’s (visually impaired persons) reading this is: continue to throw yourself into whatever you enjoy, but be open, be honest and unapologetic about letting others into your world. This is better for building trusting relationships and there are no Brownie points for being a lone hero!

My early days

playground pic\Hindsight is not the vision that all mothers have in the back of their heads but it can be just as exposing and definitely something to learn from.

When I look back to when I was between 8 and 9 years old, I realise that my sight was already deteriorating. Stargardts is such a strange disease to pinpoint as it is so gradual and only affects the central part of one’s vision. I had no way of knowing that my sight was deteriorating as I could still read, write and run about. My grade 2 teacher was Miss de Nation (it took me 6 months to realise that she was not gender confused, but rather I was baffled as I thought her name was Mr Nation but she had such big bosoms!?) Anyway, I remember sitting in her class and looking at the word ‘aeroplane’. The clever children could spell each letter, but I could only see the first 3 letters and the last 2 – ‘aer????ne’. I learned to read by the shape of the whole word rather than seeing each letter. Sentences were much easier than lists of spelling words as they had a context in which to recognise the possible words.

I remember break time being very stressful as I could not always recognise my friends. I would ‘dwaal’ around until I recognised someone or until they came up to me. In standard 3 we all congregated at the end of the field to practice handstands and backbends. Those lunch breaks were easier for me to find my buddies as they were the ones who were upside down or contorted in some gymnastic position.

Mostly, to avoid the stress of having to recognise others, I tried to finish my work quickly in the class before break time so that when the bell rang, I would be ready to run out with my friends and not have to go looking for them.

I feel so sad for that little girl who did not know why she was so unsure inside and yet pretended so well that all was fine. My advice to parents of children with visual impairments in mainstream schools would be to help the child identify what the stresses are and help them, in consultation with teachers and fellow students, to implement practical coping strategies. E.g. meet at the lamp post in the quad. Or have a special whistle (a simple, short melody) to identify where the mates are.

We have a family whistle that has a related answering call that we use to find each other in shops or crowds. Our children learned to whistle or sing the little tune so that I could find them when collecting them from the playground. I wish that I had had a ‘find my friends whistle’ at school that I could have shared with selected friends (assuming that they wanted to be found by meJ ).

Later on, even into high school, I never let on that I actually couldn’t see people’s faces or recognise even close friends. It was a great security for me when a group of us used to hang out in a particular spot. When timetables changed or there were break time meetings it became really stressful … but I never let on. I was such a great pretender in my quest to be ‘normal’. I wonder if they ever watched me walk right past and thought I was just plain rude?

Anyway, I am grateful to those who stuck it out with me and helped me in the classroom. I had a friend in each class who volunteered to dictate to me as I could not see the writing on the board, even from the front of the class. Often we would get into trouble for talking and I would have to go after class to explain to the teacher why I wasn’t using my binoculars to see the board­ – a girl has her pride! Besides, chatty remarks were easier in between whispered dictation phrases as it was quicker than trying to focus on the board, adjust my eyes to seeing the page, and still think of something entertaining to share with my neighbour. I suppose it did cause some disruption in the class at times and would have been irritating to others who worked better in silence. I have not thought about the impact it may have had on my friends until now. I I’ll have to check in with my old school pals to find out how it affected them. I would love to hear their perspective on this as it has relevance for other visually impaired children in mainstream education.

I hope that this ‘hindsight’ will provide ‘insight’ to others currently in similar situations.