Perspectives #12 - "Seeing the Light"
"Perspectives" is a series of blog posts written by people different to James, the usual writer of this blog: a white heterosexual non-disabled male. Through this series, we will hear from people from Black, Asian, and Minority Ethnic, LGBT+, and faith communities, as well as women, people with disabilities, and people from a low socio-economic background. Each individual is speaking from their own experiences alone, not speaking on behalf of a group of people. The aim is for all of us to hear voices of those who are different to us, so we can understand and build a culture in our schools and organisations where the wellbeing of all is at the centre, not just the wellbeing of those who are the same as us.
Sharifah Lee is a primary Deputy Headteacher, born and raised in Singapore although she has lived here for the last 27 years and calls England her home. Aspiring to Headship, married with 4 grown up children, Sharifah has struggled with a hidden disability all her life.
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I have always considered myself to be generally healthy apart from common colds, seasonal flus and of course, the impact of childbirth four times over, which leaves some permanent scars and associated conditions. This short narrative of what happened to me was inspired by Kate Holden's blog post earlier in the "Perspectives" series. Her bravery in telling her story gave me the courage to tell mine, in the hope that I may be able to raise awareness on disabilities that can’t be easily ‘seen’ (oh the irony of that word!). I never anticipated what happened to me on a winter’s day at school about to welcome my class first thing in the morning could have such a massive impact on my life.
To give you some context, I have always suffered from poor eyesight, a genetic flaw through generations of extreme short-sighted ancestors. This particular ‘hand-me-down’ has only dramatically affected the female side of my father’s line as we discovered much later. I understood the term astigmatism as my father used it to explain why I had such thick glasses as a child and my general clumsiness; always tripping up and hurting myself against furniture and objects. My knowledge of astigmatism was learned only when I was formally diagnosed.
“Astigmatism is a type of refractive error in which the eye does not focus light evenly on the retina. This results in distorted or blurred vision at any distance. Other symptoms can include eyestrain, headaches, and trouble driving at night.”
When I started formal education at 7, I was placed in the back row as we were seated according to the letter of the alphabet our names started from – S for Sharifah. At that point, my extreme short sightedness had not been diagnosed. My parents and teachers were stumped at my inability to read at school and yet, according to my parents who were teachers themselves, I could read and spell independently at home. This was the 70s – the model of education in Singapore was a ‘one size fits all’. There was no notion of pupils with disability or additional needs. They were never seen or heard as they were not sent to school. Up until 1996, education in Singapore was not mandatory although there were very few children who were not sent to school (apart from those who were considered disabled).
Back in the classroom now, in 1978; my class teacher met my parents to discuss the need for a child psychologist as there must be a serious mental health issue for my ‘clumsiness’ and in her words, my ‘stupidity’. It was a providence when in the same week, the school nursing team arrived to test the sight of 1000 pupils at the school. Call it a stroke of luck that my short-sightedness was discovered, and they could then monitor and diagnose my younger sister much earlier at the age of 4.
I had to be really careful with my glasses or spectacles, depending on what you call them, during my most active and formative years as they shattered easily and each pair would set my father back 500 Singapore dollars. I was still clumsy with the glasses as they were heavy and they made permanent marks on the bridge of my nose, and I became heavily dependent on them. Obviously, I could not recall life without them, but I must have somehow coped. Just to put things into context, for those readers with some knowledge of corrective prescriptions, I am about -20 in each eye!
I struggled for the next 10 years of my life until the day I managed to convince my father that I should wear contact lenses. These revolutionised my life, self-image and gave me the self confidence that was missing in all my formative years. The impact of having to wear ‘ugly’ glasses, being called names and made fun of for so many years growing up was debilitating, on top of my short sightedness, but this part of my story will be for another time.
The cost of maintaining mine and my sister’s sight and its upkeep meant that our family could little afford luxuries that others took for granted. However, to me, it was worth it! Move the clock forward 40 years since I was diagnosed and as I started this story, I am now living in England, about to teach a class of very excitable Year 3s. I looked up at a display at the back of the classroom and the display looked contorted; there were wavy lines and everything looked askew. “Cheryl, is it just me?” I asked my TA, and "yes" was her answer. Swapping around my contact lenses did not help and I managed to get an emergency appointment at the optician’s that same day. She was lovely and immediately diagnosed something I had never heard before that day but one I should have known with the extreme astigmatism I had. It was called macular degeneration. I was lucky to have private medical care (through my husband’s employment) which meant that over the next few days, I had specialists confirming this condition and some very painful eye injections to the right eye. Speed was key and my life of economic privilege meant that my diagnosis and treatment were extremely quick and efficient. I have heard horror stories of being on waiting lists and misdiagnoses.
Wet macular degeneration (which is what I suffer with) is different from the ‘dry’ version which generally affects the ageing population. My condition is more common in people who suffer from extreme astigmatism:
"Wet macular degeneration develops when abnormal blood vessels grow into the macula (the macula is part of the retina at the back of the eye. The macula has a very high concentration of photoreceptor cells that detect light and send signals to the brain, which interprets them as images). These leak blood or fluid which leads to scarring of the macula and rapid loss of central vision. This can develop very suddenly but it can now be treated if caught quickly. Fast referral to a hospital specialist is essential." - Macular Society.
There is currently no cure; the injection stops the condition getting worse for that period you suffer, and it can get worse (as I was to find out). I have now lost the central vision in my right eye and I am always on high alert that it may happen to the other eye. This would be completely life changing as I will not be able to do the work I am currently doing, drive, or get on with life the way I would be used to. I am now extremely sensitive to sunlight, find it difficult to read (I require extra lighting) and HATE driving in the dark – I will avoid this at all costs. I can still legally drive but must have regular eye tests. One really does not know what one should be grateful for until one loses it. I am now forever mistaking people I meet, being careful about moving around especially in dimly lit places, and I am starting to dislike going to restaurants and being handed menus I cannot read! There are many other things I struggle with, but you get the gist.
Currently I lead and I teach, and I find joy and pleasure in both my roles at school. I have also found a school close to home to perform both roles so that I need not travel or drive far. Traffic lights and headlights particularly blind me at night and I find it difficult to navigate as safely as I would like. I do not normally tell people about my condition as I don't want to be treated differently but I am now so careful and sensitive to the needs of others who may have hidden disabilities. I find the courage and bravery of others who suffer sight loss particularly inspiring especially the ones who refuse to let their disability get in the way of a successful life. Sometimes I am made fun of as I think people do not know how to react when I tell them. I am strong and would either brush comments off or explain how words can negatively impact on me.
Recently, there has been some limited sight restoration treatment through stem cell surgery, but these are exceedingly early days and is only at the trialling stage at Moorfields Eye Hospital in London. I do not anticipate a reversal for my condition anytime soon, if ever. In the meantime, the work of charities such as the Macular Society and other organisations that support individuals and families are amazing – the value of staying connected, as sight loss can make one feel so isolated. As a creature who thrives on social connection, the threat of becoming isolated scares me. However, I am grateful for the support of my family and close friends who are always there to be my ‘sight’, my light, and my companions.
My three suggestions for school leaders are:
1. Be sincere, transparent and honest in supporting staff/pupils with disabilities.
2. Ensure there is a truly inclusive culture and respond to needs sensitively.
3. Ensure adequate lighting in all areas of the organisation including paths and car parks (it's amazing how often this is not the case).
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Editor's note: After Sharifah wrote her first draft of this blog post, I asked if she wanted to add anything about how her experiences have also been shaped by her ethnicity and gender, and initially she said yes, because "a lot of [these experiences] have not been positive". However, she decided in the end to focus on the challenge of disability and incorrect diagnosis as a child: "although there are overlaps with the challenges I face as a BAME and a middle aged woman/educator, I think the aim of the writing will get lost if it’s mixed with these intersections [...] The challenge of growing up with this disability in school was very difficult and the fear of the condition I have now is very real. There are many stories of people especially educators who have had no choice but to leave the profession because of macular degeneration and other sight problems."