Interview with Maribel Steel

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 - BW-Jacket-Med-Bio-

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.

W:       http://www.maribelsteel.com

B:        http://www.gatewaytoblindness.blogspot.com

E:         maribel@springstudio.com.au

Interview with Kristen Witucki | Part Two

Kristen Witucki is a writer and teacher based in West Virginia, where she lives with her husband James, her son Langston, and her Seeing Eye dog, a black lab named Tad. Witucki’s fiction has been featured in numerous publications, including Exceptions, where her story “Test Run” was spotlighted in our Fall 2013 issue. Click here for that story, and click here for Part One of our interview with Kristen, in which she discusses her experiences, her influences, and how blindness has shaped her art. Read below for Part Two of our interview.

You mentioned previously the enormous impact your teachers had on your development. Did those experiences influence your decision to become a teacher yourself? If so, how?

Even before a very pivotal tragedy in my life, I related to several teachers more than I did to many of my classmates.  But when I was fifteen, my father died, and while my mother did an amazing job keeping things together financially and emotionally, my teachers felt like intellectual and emotional guardians.  They encouraged my love of literature and writing.  Now I’m very honored to pay their mentoring forward to my students, though I’m constantly worry about whether I do enough or too much. I have wanted to teach for a very long time, but it’s an emotionally demanding job—like writing—and I see myself teaching in many different capacities throughout my life, rather than staying in one place.

Given today’s technology, we are able to “read” in many different ways. What are your thoughts on this new landscape of reading that includes print and Braille, audiobooks, screen readers, etc.?

Literacy is of paramount importance, and people who listen rather than reading print or braille miss so much of the structure of language.  However, I’ve also worked with students for whom reading is truly a struggle, and even with all the practice we’ve given them, listening brings those people such pleasure and relief, I think, from their struggle.  So to me, it’s critical to imbue braille with the vitality it needs, but there isn’t one easy answer.  I’m also really eager for braille displays to be as financially accessible as regular computer screens/monitors, because the braille technology available now is truly inspiring and should be readily available to everyone.

You spoke about your family, friends, and community. To what degree are those people involved in your creative process? Who gets the first look at your drafts?

My family and friends inspire all of my creative work, but my mother, siblings, husband and son are not writers, so I don’t show them my drafts.  I do have mentors and friends who write, so sometimes I beg for their time and audience, and they graciously give me those gifts.

You and your husband are both blind, and your son is sighted. Has that changed your perspective on what it means to see? Has it changed the way you engage with and observe the world?

I’ve always lived in a very sighted world; moving to a school for the blind and its community a year and a half ago was the first time I’ve been part of a majority of sorts for months at a time.  In fact, I’ve felt a kinship with my son, because when he visits the dorm or when blind friends come over, he has a very different perception than all of the blind and visually impaired people around him, just as I did when I was a child among sighted people, whether he’s fully conscious of that difference or not.  On the other hand, he’s very matter-of-fact about our blindness and his sight.  He absorbs that categorization without misgiving.  In a way, his ease with the distinction gives me a serenity about it I haven’t felt for years.  I’ve also noticed that he’s a very auditory kid, because we’re always pointing out sounds to him.  My mother or sighted friends who visit will often comment that he has heard a sound to which they haven’t paid attention.  When he enters school next year, he’ll absorb more visual perceptions, but I think he’ll move between the sighted and blind experiences very effortlessly, because he was born into both in a way.  He gives me joy about inhabiting both realms as best I can.

For more information on Kristen and her work, please visit http://kristenwitucki.com.

Interview with Kristen Witucki | Part One

Kristen Witucki is a writer and teacher based in West Virginia, where she lives with her husband James, her son Langston, and her Seeing Eye dog, a black lab named Tad. Witucki’s fiction has been featured in numerous publications, including Exceptions, where her story “Test Run” was spotlighted in our Fall 2013 issue. Click here for that story, and read below for Part One of our interview with Kristen, in which she discusses her experiences, her influences, and how blindness has shaped her art.

Tell us a bit about yourself. How did you get to where you are today?

I grew up in Southern New Jersey, where Philadelphia, Pennsylvania is considered to be the “big city.”  After graduating from high school, I attended Vassar College where I majored in English, minored in German and earned certification to teach English to students in grades 7-12.  I didn’t teach right away, though; instead, I was a perpetual student.  I earned three Masters degrees: an MA in giftedness from Teachers College, Columbia University; an MFA in fiction writing from Sarah Lawrence College; and finally, an M.ED. in blindness and visual impairment from Dominican College.  While I was in graduate school, I held various customer service positions at Learning Ally in Princeton, NJ, but in 2012, I was accepted to teach English at the West Virginia School for the Blind, a position which has actually used knowledge from all of my degrees.  So my family packed up one weekend and moved from New Jersey to Romney, West Virginia, and we’ve been here since then.

In the blind community, some people are born without vision, some experience vision loss over time, and others lose sight abruptly and unexpectedly. Where do you fit into this spectrum, and how do you think this has affected your experience?

I was born blind.  For me as a child who came of age during ADA and IDEA when I had all of the blindness-related resources I needed, congenital blindness means that I don’t miss sight.  Although there was a period during my late elementary school years when I wished I could see, I don’t think I wished for sight so much as for understanding and acceptance from my classmates.  My family is sighted, and most of my friends are sighted, but sight itself has always seemed like a slightly bizarre psychic power more than anything.  But congenital blindness does challenge me when writing from the point of view of sighted characters. My first book, The Transcriber, is told from the point of view of a sighted character, and I had to compile his experience without a real visual frame of reference.  But the experience of wanting sight has always interested me, so I wrote about that in a still unpublished novel.

What have been the most important resources for you in adapting to life with vision loss?

People!  My parents were very determined that I live a life which is as independent as possible, and my siblings treated me for the most part like they would any other sibling.  I also had exceptional teachers, both general education teachers and special education teachers—I’m fortunate to say I have too many to mention.  Mentoring in writing and in life was a huge part of my growing up, and I’m trying to pay it forward in various ways now at my current job.  Finally, books were a wonderful resource.  I read in braille and listened to cassettes when I was growing up, and much of what I’ve learned about living has come from books.  Jean Little, a blind Canadian children’s author, helped me through that late elementary period of melodrama, though I never knew her, because she wrote so frankly about her own childhood as a blind child in a sighted world.  But I’ve learned from sighted authors as well.

How does technology play a role in your life? What changes or improvements do you think are needed in visual assistive technology?

I daily use a computer running Jaws for Windows, a screen reading program, a Braille Note and a Victor Reader Stream.  Technology helps me to teach and to write competently, though I know how to use a Perkins brailler if everything crashes.

What is your approach to writing? What do you write about?

Disability, particularly blindness, is my most powerful creative inspiration.  I write both fiction and nonfiction about it.  For me, there’s always a tension about conveying stories about blindness in a way that avoids the cliché obstacle-overcoming narrative while acknowledging that learning to live fully with blindness is often multi-faceted and complex.  I haven’t gotten it right yet, so that keeps me writing.  My nonfiction right now is primarily about motherhood as a blind person, because my husband, who is also blind, and I have a three-year-old sighted son.

What is your relationship with other creative outlets: books, music, art, film, etc.?

Books and music are the closest types of media to my heart and feed my inspiration for writing.  As a teacher and a mother of a small child, I find making time for reading to be more challenging than it has been in the past, but I still read and write whenever I can.  I’m inspired by modern writers such as Betty Smith, Langston Hughes and James Joyce and contemporary writers such as Joan Silber, Jenn Crowell, Jhumpa Lahiri and Cheryl Strayed.  I also stand in awe of blind authors like Georgina Kliege and especially of Stephen Kuusisto.  I played music for many years in school, so while I’m very far from the professionals, I know enough about the inner workings of music to enjoy it fully, I guess.  Right now, my music playing cravings are satisfied by playing for my son and by occasionally joining Tapestry, our school’s choir, on the piano during the music programs.

What role do you think storytelling plays in our human experience?

Storytellers are, first and foremost, listeners, and storytelling has the power to expand the listener’s horizons past their own life experiences and those of their neighbors and friends.  When a person tells his or her own stories, whether real or fiction, it paradoxically reaches both for universality—what we all share—and uniqueness—individual and cultural differences.  Good storytelling and listening should be about the characters, not about a group of people, and in that way, it can reach for that larger meaning and feeling of interconnectedness we all have as human beings.

Describe your communities – your creative community, the blindness community, etc.

I’m almost tempted to borrow Sherman Alexie’s rumination toward the end of his book, The Absolutely True Diary of a Part-Time Indian, when Junior begins to name all of his tribes.  My current flesh and blood, real-time community is a group of adolescents who are blind or visually impaired!  But right now, I also live in a community which is not connected very well to the rest of the world via public transit, so the virtual worlds of blogs and Facebook, while they have their drawbacks when it comes to real interactions, do help to make my community more widespread.

What would you have to say to our community at Exceptions given the opportunity?

Well, I’ve published one short book and several short articles, so I’m still at the beginning of my writing journey.  So far, I’ve learned that everyone has a story and that sometimes, it occurs in a place I initially didn’t believe possible.

 

For Part Two of our interview with Kristen Witucki, please click here. For more information on Kristen and her work, please visit http://kristenwitucki.com/.

Spring 2014 “Ways of Seeing” Contest

“Language gives a fuller image, which is all the better for being vague.
After all, the true seeing is within…”

So writes George Eliot in her classic novel Middlemarch. As a platform for blind writers and artists, the Exceptions community has an interest in what “true seeing” actually means, and how we depict it in writing, art, and multimedia. In the arts, loss of sight or atypical ways of seeing can serve as symbols for inner conflict; at other times, they afford characters a unique and sometimes superior perspective. This is what allows the synesthetic protagonist of Wendy Mass’s novel A Mango-Shaped Space to say: “All those people in their black-and-white worlds—they have no idea what they’re missing.”

For our Spring 2014 “Ways of Seeing” contest, we at Exceptions Journal urge you to show us what we’ve been missing. Give us stories and art that change the way we see ourselves and each other. Change how we see seeing. All submissions should have at their core the theme of sight or blindness, whether literal or metaphorical. Three winners will be published in our 2014 print issue and will receive a complimentary copy. Runners-up will be featured online.

For this contest, we are accepting submissions in fiction, nonfiction, poetry, and other media, from both sighted and unsighted contributors. Anyone can submit, and all points of view are encouraged. Please follow our regular submission guidelines, which can be found here. Be sure to indicate in your email that you are submitting to the Spring 2014 Contest.

The deadline for submissions is 3pm on February 28, 2014. We look forward to hearing from you.

Interview with Jeff Moyer

Jeff Moyer is an authentic renaissance man. After losing his vision at an early age, Moyer went on to become a pivotal player in the Disability Rights Movement, a forerunner in accessible technology, and a consistent advocate for human rights. He has used songwriting and musical performance as a means of social change, and now operates his own publishing company, Music from the Heart. Moyer is also an author, historian, and public speaker who has been featured on the CBS Evening News, National Geographic, and the BBC. He spoke with Exceptions Journal‘s editor-in-chief Craig Pearson about his journey and how blindness has influenced his creative perspective.

Craig Pearson: Could you give us a brief history of your life and how you got to where you are today?

Jeff Moyer: When I was five years old, two seminal moments happened—virtually simultaneously. I nearly died from a case of measles, and it triggered the genetic predisposition for a form of retinitis pigmentosa called cone-rod dystrophy. I started to lose my vision at that time. The same summer, my brother was born, Mark, with a severe and profound cognitive disability. So my life was shaped by my experience with my brother: watching his developmental delay increase, and the cruelty and the victimization he experienced at the hands of the neighborhood children.

At the same time, I was losing my vision, and my parents were told that I was pretending I couldn’t see. So for three years, between the ages of five and eight, my parents insisted I was pretending. When I was six, I began piano lessons, and the piano teacher was also told I was pretending I couldn’t see, so he insisted that I sit back from the music, and I then couldn’t see it. As a result, I was pretending I was reading sheet music, when in fact I couldn’t see it. So for a year and a half, I did that. He would play something, and I would muddle through it by ear, and then I would go home and my mother would open the piano music and we’d pretend I could see—and I would memorize it, learning that if I could hear it, I could play it. I didn’t consciously understand that what was happening was I was beginning to develop my capacity as a by-ear musician, but that is what happened. And later in life, that would be followed by guitar lessons at 14. By that time, they understood I couldn’t see, but the teacher said, “If you can’t read music, I can’t teach you.” So I found some folk musicians, took some lessons, and began to play in coffee houses and had opportunities to perform through the Civil Rights Movement in the 60s.

Music is a very powerful way to convey ideas. There’s a long history of music as a very effective means of stimulating social movements and helping to create social change. I went to California in 1968 and came back to Cleveland in 1982 after working in the assisted technology world in California and teaching at San Francisco State University, where I developed a course on the social psychology of visual disability. While teaching that course, I was conducting the human factor analysis on a state-of-the-art reading machine for blind people with a team at a Silicon Valley company. Through that I met Stevie Wonder. And the voice of that synthesizer became the voice of Stephen Hawking: it narrates A Brief History of Time, the movie that Dr. Hawking did based on his book.

That lead to other endeavors with music, including being the only musician to use synthetic speech singing—giving people with disabilities that impaired their ability to speak the power to sing. They can download my singing program and, through their own synthesizer, sing. There’s much to say about technology. I’ve used it very effectively as a means to write. My ability to play by ear has led to my developing the ability to play 20 instruments, and now I have a studio in my home and I produce my own work. My son is a sound engineer and musician. We have a company called Moyer and Son, and my publishing company is called Music from the Heart.

CP: As somebody who’s blind, and grew up that way, do you think that you come at the creative process from a different perspective? How does that influence you as, say, a songwriter or a musician—and just generally as an artist?

JM: Blindness is a gift. Because you are free from the distraction of vision. You are free to explore the inner landscape. I think I’m a much more creative person, a better writer, and a better musician because I’m totally focused on it. While I’m performing, I’m focused on the sound of my voice, the sound of my instrument—I’m not distracted by whether people are listening or not. When you perform a concert, they always tell you that you should look into the audience and find someone who’s listening and watching and then play to that person. I don’t have that, so I just listen to myself. I create sort of a mental image of how I want my music to be perceived, and I try to project my intention through my music. And I think it’s effective. Blindness, if you’re open to it, it’s a very potent teacher. I think it’s no fluke or coincidence that many great writers have had visual disabilities—and musicians as well, in many genres.

CP: I find the language that you use very interesting, because I feel like we often hear these stories of “overcoming” blindness or “getting past” it. And you used words like being “open” to it.

JM: What I mean by that is being open to it rather than resisting it. You have to go through grief. It’s a terrible loss. Vision is our primary sense. It’s estimated that the average person receives 93% of the information they gather through vision. So there’s no mistaking that it’s a terrific loss when you lose your vision, or when you’re born with limited or no vision. You have to be able to be open to the feelings—the sadness, the anger, the frustration, the shock. You know, it doesn’t stay put. You bang into something, and in that moment, you’re going to feel anger, frustration, disappointment. And you have to be able to feel it and release it. But the key is releasing it. And you can release it by talking, or by just cognitively thinking about it and saying, “I’m not going to let that control my life.” But recognizing that there are what I call “a thousand little deaths.” The many, many times that I feel the impact of my disabilities. But then you release it, and you’re open to what it gives you. Blindness is a great teacher. But you have to be willing to be a student.

CP: On that note, I’m really curious to hear your opinion on education, specifically education for students with visual disabilities. What do you think is the best way to help students come up through their education, who are living with visual loss of some degree?

JM: I think we’re missing the point when we talk about the three R’s: reading, writing, and arithmetic. We should be talking about the 3 S’s, which is something of my design. The first is “scholastic” learning. The second is “skills” development. When you’re blind or you have low vision, you have to learn to use adaptive technology. You have to be willing to use it in public, and that can be embarrassing. You have to actually be proud of it, that you’re doing something more difficult than other students, and not be ashamed of your low vision or blindness. Be able to talk about it, be the expert on it. Understand what the nature of your vision dysfunction is, and be able to communicate about it. And finally, the third S is “social” understanding. When you have a visual disability, I think it’s very important to be in contact with other people who have visual disabilities. Find ways, whether it’s camps, or seminars, or weekends, or whatever it is, to engage with other students with visual disabilities. If you attend a school for students with visual disabilities, you have that built in. Because there, in those communities, you’ll find that people will understand. It’s our sameness that we share, and that’s important. That doesn’t mean that that’s all we are, but it’s critical that we experience that.

CP: You bring something up that we at Exceptions are really focused on, which is that idea of bringing together a community. And in our case it’s a community of artists or writers who are visually disabled. What do you think about that mission? And what has your creative community been like?

JM: I think that what you’re doing is revolutionary. It’s going to spur a lot of synergism between people who share the artistic gene, so to speak. My communities have consisted of people I’ve played with, primarily—and as I’ve said, my son. I’ve been in groups, but I’m a songwriter, and I work as a solo act. So I have not really had a community of support. But I think what you’re doing will help people get that.

CP: I’m curious. If you were asked whether you have any advice for students, say, at the high school or university level, who have visual disabilities but have these passions for music or writing or poetry or any of the creative arts, what would you say to them given the opportunity?

JM: I’d say it’s an extraordinarily hard way to make a living. And if they really intend to do that, have a really good plan. We’re so well connected now: the American Foundation for the Blind has a network you can tie into and talk to other people with visual disabilities that are doing a career that is of interest to you. They have a mentoring program. I think NFB and ACB have similar programs. Explore what it’s like for people who do what you want to do, and find a mentor. There are many people that would love to be asked to mentor a young person.

CP: Do you have anything else that you’d like to say—any final thoughts related to Exceptions, your music, or the community in general?

JM: Perseverance and resilience are more important than artistic or musical skill. There are many people with talent. But the people who succeed are the people with perseverance and resilience. For every job I’ve gotten—and I’ve played in 47 states and internationally—and for every project I’ve developed, I’ve been turned down two or three times. So keep it up: keep asking, keep seeking, keep looking. If you are a writer, or a musician, or any sort of an artist, it’s in you. And it’s a gift. Even if it’s something that you just enjoy personally, and you don’t have a way to give it away to others—Exceptions is that way. It is an opportunity for people to be read, to be heard. To understand that people want to know what they’ve done, want to read it, want to hear it, want to experience it. And it’s a beautiful thing. I think it’s vital and essential that people try, and that’s where the resilience comes in. It’s about doing it and then doing it some more. If that’s who you are—do it, and live it, and be it. And give it away. Find ways to be of service to others. It’s a wonderful way of life.

Abraham Nemeth: 1918-2013

by Katie Ott and Elliot Zirulnik

The founding father of the Nemeth Code, Abraham Nemeth, recently passed away at the age of 94.  He was known for innovating the Braille code for math, but is remembered by close friends and family for his humor, musical abilities, and religious scholarship.  Nemeth wore many other hats, as he also worked as a psychologist, a mathematician, and an inventor.

Nemeth, a lifelong mathematics enthusiast, was himself born blind.  In the process of his studies, Nemeth grew frustrated by the lack of interpretive resources needed to understand and solve high-level equations without undue confusion.  Consequently, Nemeth went on to earn his degree in psychology, but continued to pursue his love of numbers.  He used his spare time to invent new Braille symbols for use in mathematics, ranging from addition to calculus.

Michael Hudson, director of the Resource Center for Persons with Disabilities at Michigan State University, praised these strides in accessibility: “For decades, [students] who use Braille and pursue mathematics and scientific work have used Dr. Nemeth’s Braille code… [He demonstrated that] blindness did not need to stop one from reaching goals so long as one was willing to persist at the challenge.”

Largely due to the support of his wife Florence, Nemeth earned a doctorate in mathematics at Wayne State University in Detroit, and soon after founded the school’s computer science program.  An observant Jew, he worked to translate the Hebrew Bible and other Jewish texts to Braille.

After retiring from academia in 1985, Nemeth continued to advocate for the advancement of accessibility in the sciences, regularly appearing at speaking engagements throughout the world.

“Abraham Nemeth was indeed an icon and having the chance to speak with him was akin to speaking with Louis Braille himself,” added Hudson.  “These icons in the field of blindness were common people who did not quit in the face of adversity and in doing so used their talents to become exceptional.  Let that be a lesson to all of us as we work diligently to pursue our dreams and exceed expectations.”

Elliot Zirulnik is a member of the Exceptions Journal Editorial Board.  He is a senior at Michigan State University pursuing a degree in Media and Information.

Katie Ott is an employee of the Resource Center for Persons with Disabilities at Michigan State University.  She is a senior pursuing a degree in Social Relations and Policy.

Esref Armagan: The Art of Feeling

by Katie Grimes

Esref Armagan, a Turkish painter, was born blind: one of his eyes had failed to develop fully and the other was scarred and stunted. Esref has never seen a day in his life, but that has not stopped him from teaching himself to draw and paint without any formal training or schooling. While flipping through his online collection, I can’t help but pause in awe to admire his dramatically vibrant use of color, his ability to draw in perspective, and the realism present in his paintings.

Esref’s ability to paint recognizable, detailed images without ever having seen them has impressed and inspired many neuroscientists and prompted them to begin asking question about how our brains make mental images. In 2004, Harvard scientists scanned Esref’s brain and found that his visual cortex–a brain region normally quiet in the visually impaired–became active when he picked something up and began to draw it. These results lead us to believe that seeing goes far beyond what we view with our eyes, extending into other senses like touch.

Esref Armagan and other artists like him challenge our notions of what it means to see and what sort of vision is needed to produce works of visual art. Esref interacts with the visual world in an unconventional way, but as evidenced by the striking realism and vibrancy of his art, he observes it in great detail and with a unique perspective. The fact that his artistic works have influenced not only art lovers, but those in the world of science, attests to the strength of his talents. Just as he feels the objects he portrays, Esref is able to touch those around him in a significant and meaningful way.

Katie Grimes is a member of the Exceptions Journal editorial board. She is a sophomore at Michigan State University pursuing a degree in Professional Writing.

The information in this blog post came from the sites below. Check them out to learn more about Esref Armagan.

Esref’s official website: http://esrefarmagan.com/
Article about Esref in New Scientist magazine: http://esrefarmagan.com/wp-content/uploads/2013/08/New-Scientist.pdf

Art Beyond Sight: A Gallery of Perspectives

by Craig Pearson

At first glance, the e-Gallery for the Art Education for the Blind’s “Art Beyond Sight” initiative looks like a typical online collection. Hyperlinked tiles show previews of pieces by various artists—many bearing pops of color and textured shapes, some bold, others subtle. It is only when one clicks through to see the works full-size that the unique energy of this collection reveals itself.

“Art Beyond Sight” showcases visual artwork by blind artists. The e-Gallery contains photographs of works in numerous media, most of which are deceptively simple. What appears at first to be a drawing is, in fact, a sculpture in limestone—a denim jacket carved from stone and stained with oils to produce an acutely realistic, yet ultimately inflexible, form. An angel-shaped ornament turns out to be made entirely of long, thin strips of rolled paper. An abstract painting is actually an underwater photograph.

The featured artists hail from across the globe and live with varying degrees of vision loss. Many of them attribute their abstract points of view to these visual conditions. One artist writes that “my handicap, which on the surface has blinded my vision of the world, has actually allowed me to look much more closely at the world and to see what is truly there.” The sculptor of the limestone jacket is quoted as calling her unbalanced vision (due to blindness in one eye) an “extraordinary gift” that gives her sculptures an “uncommon perspective, jarring color, an anomalous form.” It is easy to see, when browsing this e-Gallery, the truth in these statements.

While their works differ vastly in form and technique, the artists on display here share a common fascination with point of view. Many embrace unexpected abstractions, portraying common objects—like a jacket or an ornament—from unique perspectives. Additionally, several describe how their approach to art has changed over the course of their lives, whether as a result of shifting perspective due to progressive vision loss, or merely due to new-found insights and discoveries.

Viewing and experiencing these works of art, one is struck by the multiplicity of ways in which human beings observe and perceive the world around them. One might wonder: is art made by a visually impaired individual fundamentally different from that made by someone with clinically unimpaired vision? At first look, the answer appears to be no. The “Art Beyond Sight” e-Gallery only reveals its idiosyncrasies up close. Pieces that seem traditional unveil their atypical techniques; use of color proves daring and unconventional; form and subject clash to create new impressions.

In the end, it may not be possible to pick the blind artist out of a crowd of art pieces. But viewing such works collected together, one can appreciate the rich perspectives that these artists bring to the fore in their artwork. They raise questions about how we see. And the answers stand irrefutably on display before us, in all their colors and forms.

Craig Pearson is the editor-in-chief of Exceptions Journal. He is a senior at Michigan State University pursuing degrees in Neuroscience, Biochemistry & Molecular Biology, and English.

Exceptions Journal: Getting Off the Ground

by Craig Pearson

The first seed of what would become Exceptions Journal came from a conversation I had with a mentor at Michigan State University last spring.

We were talking about my laboratory research: a collaborative effort to develop an injectable drug treatment system for the genetic blindness condition called Leber Congenital Amaurosis. As an undergraduate researcher with a focus on vision and neuroscience, I am constantly asking questions like: “How many people could this help?” and “How much vision could this restore?” Questions, in essence, that are very future-tense.

In the midst of our conversation, however, a different sort of question arose: “How much do we know about people’s experience right now?” And thus emerged the mission of Exceptions.

In our contemporary American mindset, we are nearly always looking to the future. How can we make things better? What can we change, and how quickly can we do it? Scientific and sociological research on blindness and visual impairment naturally—and necessarily—takes a similar tack. We examine before vs. after and try to quantify the degree of improvement. We are always looking to fix things.

The other half of this equation, of course, is the “now.” How people are living their lives with varying degrees of ability and opportunity. Individuals who are overcoming obstacles and finding success in unconventional ways. Artists who defy stereotypical perceptions of “art” and the creative process. In essence, people who are exceptions to society’s sometimes limited views.

These are the people we at Exceptions Journal want to hear from. They are our namesakes: individuals who work around the barriers of blindness and limited sight to generate unique artistic visions. We seek to provide a platform for storytellers with distinctive voices and urgent, richly realized stories to tell. Stories that may be accounts of their own journeys, struggles, and triumphs—or stories that they have created entirely from their imagination and serve as the vehicles for new ideas and ways of seeing our world.

With this goal in mind, a group of students at Michigan State gathered to develop a new art and literary journal that spotlights these voices. We work collaboratively with the MSU Resource Center for Persons with Disabilities and the Digital Humanities and Literary Cognition lab, a research laboratory that aims to investigate how literature and the humanities engage our brains. Do those with limited sight truly “see the world differently”? The answer, we believe, can come from the creative forms of self-expression that Exceptions Journal places front and center.

As science and social movements look forward, we at Exceptions are eager to gain insight into what’s happening right now. We hope that people of all backgrounds—young and old, sighted and not—will have the opportunity to appreciate the voices and visions we are collecting here. From asking questions about the nature of creativity to simply enjoying a well-told story, we are eager to continue highlighting the amazing work of our contributors. We’ve only just begun, and the future is at our fingertips.

Craig Pearson is the editor-in-chief of Exceptions Journal. He is a senior at Michigan State University pursuing degrees in Neuroscience, Biochemistry & Molecular Biology, and English.

Call for Submissions

We are excited to announce that Exceptions, a new art and literary journal for students with visual disabilities, is currently accepting submissions for its inaugural issue. This journal offers a space for creative expression and open dialogue, publishing work that engages in original ways with issues of vision and sightedness. By gathering a talented and diverse pool of contributors to share their stories and artistic ideas, Exceptions strives to build a vibrant creative community and reach audiences on an international scale.

Exceptions invites submissions of creative work produced by visually impaired students in the following four categories:

  • Fiction
  • Nonfiction (autobiographical narratives, personal essays, etc.)
  • Poetry
  • Other media (music, film, visual and tactile arts, etc.)

Our reading period is from July 1st to November 1st, 2013. Selected work will be published online on a rolling basis, with new content being posted to our website on August 15th, October 15th, and November 15th, with our inaugural print edition to follow in early December.

Exceptions aims to be more than just an exciting new forum for creative self-expression. We believe that the work produced by our contributors has the potential to push boundaries and redefine notions of ability. We’re looking for stories that are compelling and urgent, that express the rich complexities of life, that have the potential to change hearts and open minds. Whether you are a practiced writer or a first-time poet, we at Exceptions hope that you will utilize our platform to share your voice, words, and ideas. We look forward to hearing from you.

To submit work to the journal, please view our submission guidelines. Questions and comments can be directed to us at exceptionsjournal@gmail.com.