Maribel Steel is a writer, speaker, blogger, mother and vocalist. She lives in Melbourne, Australia and has been legally blind since the age of seventeen with Retinitis Pigmentosa (RP). She says her passion is to write and dispel some of the myths held by others about living with a disability – and shares her life experiences through presentations and insightful short stories. Exceptions editor-in-chief Craig Pearson spoke to Ms. Steel about her background and her inspirations.
Tell us a bit about yourself. How did you get to where you are today?
In a nutshell – with a determined heart, a resourceful way of thinking and with tenacity of spirit. My father likes to say I’m stubborn but I don’t agree and won’t hear of it!
My aspiration to become an artist emerged around the age of ten when I took to tracing random patterns on pieces of paper. My precious box of Derwent pencils delighted my eyes: delicious round-barrelled sticks of colour I often nibbled on while drawing in my mother’s kitchen in our home in Melbourne.
My parents encouraged me to pursue my deep appreciation of drawing, especially my Spanish mother who had many talents in the creative arts. My English father was a lecturer and researcher in ‘Romance Languages’ at University and on some Sunday afternoons, I pestered him until he agreed to take me to the empty university.
My heart was fixed on one mission: to draw in the classroom with coloured chalks on the wide blackboard.
But a few years later, I was struggling to see anything on the blackboard at all. An alarming inability to see my school work at fifteen, led to a serious investigation and countless tedious tests.
It took the skill of fifteen Opthalmologists and other specialists to deliver the definitive diagnosis. I had an incurable eye condition, Retinitis Pigmentosa (RP) and was pensioned off at seventeen as legally blind.
It was not the time for drawing but a time for resourcing.
I had to adopt new skills in order to function in a sighted classroom. By Year 11, I was using hand-held magnifiers to read textbooks and a tape recorder accompanied me to various lessons.
Then came the question – to Braille or not to Braille?
I was unable to embrace this reality since the thing I feared most was to appear different from my peers. Having the Braille alphabet guide tucked into my school bag was rejected and instead, I took a course in touch-typing which, three decades later, now serves me well as a writer who has traded my play with colour to paint stories with words.
How do you think this has affected your experience of life
Looking back from my vantage point, I feel grateful that my sight has been fading gradually and still hasn’t disappeared completely.
I do remember a defiant spirit rise within my young heart that I would take the obstacle of vision loss as a challenge, and not view my life as limited.
I have learned through this experience that often it is my attitude that will bring me victory or defeat in what I am trying to attain.
I strongly reject the term ‘disabled’ to describe my life as it doesn’t represent the whole of me. I am a mother of four grown children, and studied aromatherapy massage as my profession in the 1990s.
As well as being a writer, speaker and blogger these days, I also help my partner in his recording studio as a backing vocalist for some of his clients. So this word ‘disabled’ is a bit of a thorn in my side. It may only be a word to some, but it has a negative connotation. Instead of saying what I can’t do, I look for realistic ways to reach my goals. Sometimes this might be on my own and at other times it involves seeking assistance from others.
I have learned a beautiful truth that to ask for help when you really could use a sighted person’s eyes is not a sign of weakness but actually gives both of you a wonderful opportunity to interact and to achieve together – the classic win-win situation.
What have been the most important resources for you in adapting to vision loss?
Craig, this is a great question. It touches on my favourite subject which I am passionate to share as my personal philosophy: that there is an ART in being blind.
Life is about developing our skills in whatever career or hobby we choose to master. The only difference with losing sight, is that we didn’t choose this ‘vocation’.
Obviously, as the organ of sight weakens, we are forced to rely on our other senses: to hear, to touch, to smell, to taste, to intuit and to imagine. Apart from these sensitivities, three personal qualities that have proven to be powerful resources in my life are attitude, intuition and memory.
I have found trusting my intuition to guide me when sight cannot, and improving my ability to remember the smallest of details, to be the two best friends of attitude.
My firm belief is that as sight fades, we can become the artisan of our new life’s direction by seeing our role as an apprenticeship: learning new skills to buff and polish until we can craft the life we want to live.
How does technology play a role in your life?
I use it every day, and am so grateful that technology in assisting the blind in the 21st century has opened many doors to opportunities that I didn’t have at my fingertips in my teen years.
I mainly use JAWS, a computer screen reading software program (which drives my sighted family crazy with its robotic drone). But, as a writer, my dear JAWS helps me to zip around files, compose stories and connect with the world wide web.
The initial training lessons were quite overwhelming because it was all so very new to me. But I would highly recommend using JAWS to anyone needing to relieve the strain on their eyes. I’d be lost without my old friend ‘George’, as my young son once thought the robot was called.
The only other piece of technology I use on a daily basis is a magnifying CCTV to read printed mail, check some of my writing or to make a purchase over the phone with my credit card.
Which remeinds me, of a disillusioned phone operator who once said to me, “Oh, you don’t sound blind?” which was the first time I realised this was one myth waiting to be explained.
What changes or improvements do you think are needed in visual assistive technology?
It’s a flowing river of change out there – as soon as you think you have mastered one type of device, they update and bring out a new one!
I haven’t been brave enough to switch to a smart phone yet but I wouldn’t mind trialling a ‘smart’ white cane. Why shouldn’t my portable hand device (that goes everywhere with me anyway) have a GPS, a note taker, a phone and of course, fast internet connection for those split seconds when I am waiting by the traffic lights to check my emails on the go.
Seriously, if anyone needs more current information on phone apps and other accessible devices, I recommend checking out the following post, 326 Accessibility Apps for I-phone for the visually Impaired and the Blind, on the Low Vision Bureau blog: http://lowvisionbureau.com/blog/
What do you write about?
My writing is mainly nonfiction, memoir type stories where I reflect on many aspects as a person facing the gateway to blindness.
I had a strong yearning to jot down my autobiography a few years ago as a legacy for my children so they would know about my life’s journey toward going blind: the good, the bad and the ridiculous.
Then after I wrote my two hundred pages or more, I found a writer mentor who read the first two chapters. She kindly commented, “It’s OK … for a first draft.”
First draft? I thought I had finished it.
That was the beginning of my writing career. I was determined to learn by researching on the Internet how a writer moves from first draft to the final complete and polished story.
Even though that particular manuscript remains in my desk drawer in draft form, some of the incidents have served as seed-thoughts to new stories, a self-published book in 2012 (My Mother’s Harvest), and a ‘proper’ memoir under construction at present.
The stories I particularly love to write are short stories for my two blogs. Ideas jostle to be written and, like children, I have to ask them to kindly wait their turn.
On good writing days, inspiration flows and often situations that occur as I travel or the funny things people say end up being my published stories.
But on those very difficult days, I can feel like I’m stuck in a sand bunker slogging out words that won’t lift out of the sandpit of this writer’s despair.
I have learned, as in life in general, to let it go, take a break and come back later. The reward is being able to craft anew and see the potential of my initial story begin to emerge, as beautifully stated in this quote,.
“The first draft reveals the art, revision reveals the artist.” Michael Lee
What role do you think storytelling plays in our human experience?
I think that when we open to the sharing of our personal stories, we feel the connectedness with others as one human experience.
Every single person has a challenge in their lives and they will be confronted to face it at some point. It may be a health issue, the diagnosis of pending blindness, a mental illness, a relationship incompatibility, a financial concern, a family crisis – we have been enrolled in the school of life, and when we find others in our similar situation, it is like opening a window to a heart-warming realisation: we are not alone.
The telling of our story, whether it be through words or in the multitude of art forms we use to express our human creativity, is the true story being told that passes on the gift of ‘being human’ to future generations.
What is your relationship with other creative outlets: books, music, art, film, etc.?
I love all forms of creativity that I can touch!
This includes the tactility of books. Even if I can’t read them, the smell and feel of a brand new book is divine. My hands glide and cruise on a daily basis – from garden plants, to shop packages, to outdoor sculptures, to feeling the texture of everything around me.
I enjoy the placement of ornamental objects in our home too, my hands preoccupied with placing each trinket or ceramic ornament in just the right place which brings a sense of satisfaction.
On an equally creative level is my love for music and singing. I had once dreamed of becoming a famous singer but now happily sing and perform in house concerts as part of a duo with Harry Williamson, my musician and composer life partner.
We work together in his recording studio to produce quality recordings for his clients. Harry has found it beneficial for me to listen to the mixes with my hearing sensitivity. Move over Snoop-dog, here comes Big Ears!
Visual forms of art such as watching movies and DVDs are not my favourite pastimes. The barrage of exploding sounds are intolerable. I prefer dialog type films, comedy or interesting documentaries.
One more thing I would like to add here is my love of art galleries.
It seems ironic to my sighted friends when I jump at the chance to visit the latest exhibition in Melbourne. They often laugh and ask “Why? You won’t see anything?”
To which I reply, “No. But you will and you can describe the paintings to me.”
The thrill for me is that I get to observe, even if by osmosis, the images on canvas, as interpreted by the eyes of another.
The most exciting galleries I have been fortunate to visit with my patient partner, Harry, and audio describer son, Mike, was in Paris. My sighted guides took it in turns to paint in words, the pictures on the gallery walls.
In one Cubist gallery, the curator on noticing my white cane, gave me special permission to touch the artwork – sculptures in ebony, wood and bronze. I don’t know who was more thrilled, Harry and Mike who were reprieved from describing the fine detail, or my fingers that danced with joy over the same object once held by the master craftsman.
Describe your creative community, the blindness community, etc.
Hmm, my personal creative community is also my blindness community.
Since beginning to write my life blog, Gateway to blindness, many other visually-impaired people around the world have made contact and we now share regular email updates and have even begun to call via Skype to swap news of our daily experiences.
I am thrilled to have made so many new and kind friends facing similar challenges of vision loss, as most of my friends here in Melbourne are sighted.
I do use the services of Vision Australia, one of the main organisations which deliver a wide range of training programs, social events and technical support for clients with any issues of vision loss throughout Australia. I mainly subscribe to receiving newsletter updates and audio books from their extensive library. They stock thousands of titles and the service is free. Occasionally, I have attended an audio-described theatre show with the help of a small group of volunteers who devote their time to making a visit to the theatre or opera or seeing a live show an incredibly special event.
I wrote an article that appeared on ARTSHUB in 2013, called ‘Theatre through blind eyes’. If you would like to read the story, it is here: http://gatewaytoblindness.blogspot.com/2013/11/why-watch-live-theatre-if-you-cant-see.html
Given the opportunity, what would you have to say to our community at Exceptions?
I commend the work you are doing in Exceptions Journal! From Melbourne to Michigan, and many places in between, you are helping to shine a light of awareness and offer insights that bring our worlds closer together in the sharing of our stories, out of love of art and literature.
Craig, I am very honoured to have this interview with you and to be included in your community of dedicated and passionate creatives.
I encourage your readers to keep shaping their dreams and would like to remind us all of this wonderful quotation from Henry Ward Beecher (1813-1887):
“Every artist dips his brush in his own soul, and paints his own nature into his pictures.”
© 2014 Maribel Steel
With special permission by the author for publication in Exceptions Journal
Maribel Steel has been one of the judges two years running for Vision Australia’s Dickenson’s Literary Award and has recently joined the team of peer advisors for The American Foundation for the Blind (AFB). She has published a book, My Mother’s Harvest, and is currently writing an ebook (or two) – as a collection of short stories focusing on The ART of Being Blind.