by Maribel Steel
When I was giving a presentation recently at a primary school, one question I received from a nine-year-old boy was, ‘What is it like to be blind?’ My immediate thought was, what a brave thing to ask. The children were sitting on the floor in front of me, and I could hear a pin drop. As if in slow motion, a myriad of thoughts flooded my mind with various replies; where do I begin? I smiled, and gave him my honest reply. ‘Being blind means I have learned to do things a little differently than a sighted person might do.’
If we rewind the clock back four decades when I was first diagnosed with an incurable eye disease, ‘being different’ was too shocking for me to accept. I was in my late teens, extremely shy and the last thing on earth I wanted to be was different from my peers. Two new words entered my family’s vocabulary; two words that initially made my mother weep and my father fall silent. Two words that separated me from my family and friends – Retinitis Pigmentosa. The prognosis of being blind one day, and labelled as ‘disabled’, scorched my young soul like a hot branding iron.
The problem I faced in those early years was a question of ‘where do I belong in my community?’ I remember my father sitting at the kitchen table, flicking through the Saturday Age. My mother was stirring dinner on the stove when he said, ‘Do you want me to read the employment section? Hear some of the career options you could consider?’
I knew he had not said ‘now that you are visually impaired’ because it was a touchy subject. We were still coming to terms with my ‘future’ prospects while I was partially sighted and partially blind. My mother turned down the heat on the stove and took a step closer to peer over my father’s shoulder. Skimming the lines, he said, ‘What about becoming a nurse?’ Then he thought for a moment. ‘Perhaps not. How about, er, air hostess?’
Mum shook her head.
‘Here’s one. Secretary?’
I rolled my eyes. ‘That’s a bit hard with a magnifying glass.’
‘OK. Well, what about becoming a teacher? That might suit you?’
Silence from all three.
My heart sank with a deep realisation that to be visually impaired, to be different, and disabled, meant fewer career options and more closed doors to a fulfilling future. Yet, I refused to give up. My seventeen-year-old self prepared to weather the storm. I made a pledge to my future. No matter what anyone else thought was possible or not, I would place a shield of hope around my dreams.
Several years on, experiencing motherhood, and raising four children certainly had its challenges as a visually impaired mother. I found myself comparing my efforts to other sighted parents, a sure way to feel inadequate. It was a constant struggle to keep my internal critic quiet. Sometimes, especially when tending to a garden to escape my inner turmoil of inadequacy, my kinder internal voice would say, is this daffodil inferior to that jonquil? Is a duck inferior to a swan? They are merely different; both belong to the flower or bird kingdom, and both are equally valid.
My journey towards blindness has revealed many insightful moments which have placed me on pathways I never could have imagined in my teen years; I went on to forge a career in aromatherapy and massage, a singing career as a teaching artist and children’s choir leader, a writer and author using assistive technology, and an educator and public speaker inspiring my community to focus more on the ability in a so-called disability.
If I could answer the young boy’s question again, what is it like to be blind? I could say, ‘for me, being blind is a privilege as I get to sense and experience life from a different perspective, and to share what I have gained, with you.’
Believe it or not, it was a rose bush that brought my attention to a life lesson. I was pruning her thorny branches carefully when a huge prickle grabbed my bare arm and hooked deeply into my skin. I cursed the thorn and could not get free. An intuitive voice said,
‘Consider this lesson: you have to let go. The choice is yours.’
Choice? Let go? The thorn was gripping my arm, causing me pain. As I managed to untangle from the thorny branch, the message was clear. Any difficult life challenge, such as going blind, can be viewed as a thorny situation, a series of prickles which lead to pain. But, there is another option – to let go of that attitude, and accept a more helpful one to view the situation where you can see the growth of a single rose, blossoming regardless of the thorns.
Of course, life is not all roses, and trying to succeed on some days in a sighted world is hugely challenging. Last year, I enrolled in a tertiary study course where the learning materials were not accessible to my assistive technology, a screen reader that does not flow in a flow chart, or appreciate the prettiness of graphics in a PDF. As much as the trainers tried to provide other documents, the pace was intense with deadlines for assignments due each week. I fell apart on many nights, crying with frustration. I was not stupid, I was disabled due to inaccessible materials. For ten months, the thorns hooked deeply into my aspirations. But I was determined not to let go of the ‘rose’. What got me through was the practical assistance and emotional support given to me by my husband, a trainer (outside the program), and fellow students urging me on. To celebrate, it occurs to me that I should mark the achievement by planting a new fragrant rose bush in my garden – one called Blooming Miracle!
Weathering the storm of going blind is an ongoing journey, one that I continue to embrace each day. What can seem a life of closed opportunities when losing sight, need not be a loss of vision in attaining our aspirations. As I enter a new phase with a guide dog by my side, I am looking forward to our school presentations and more thought-provoking questions from the young students – and growing many more roses, metaphorically and in my garden.
Maribel Steel is a Melbourne-based freelance writer, author, public speaker and disability educator. She is legally blind and the mother of four. She is currently a Kaleidoscope teaching artist and a peer advisor for VisionAware (USA). Maribel has appeared on national TV, ABC radio and international podcasts as a blindness advocate and sensory cook. Her website is www.maribelsteel.com.