An Open Letter to the Donors of Southeastern Guide Dogs

I am excited to begin the new year in a spirit of gratitude. Your gift to Southeastern Guide Dogs blesses all future guides and graduates—but it also touches every member of the Southeastern community.

I graduated with my first guide dog from Southeastern Guide Dogs in July 2014. I had been matched with York, an 18-month-old black Lab whose large brown eyes shone with intelligence and determination. After a month of training in Palmetto, FL, I was ready to take my pup home, but I had only a faint understanding of how he would change my life.

The training process was not easy. Before York, I had used a white cane for safe and independent travel: independent being the key word. I knew how to trust myself, but I had to learn to trust York. On our third day of training, we paused at the edge of a curb, ready to step down. With my cane, I could have judged the depth easily—using the cane to touch the step and the sidewalk below. But with York, I wouldn’t feel the change in elevation until we stepped off the curb. I knew it was only one step, but I stood there for several minutes, afraid to trust another creature with my safety. I thought I could do it better. I thought we would stumble. I thought I would step down wrong and twist an ankle.

My trainer stood quietly beside me. She repeated, “Whenever you’re ready, tell him to go forward.”

When I finally gave York the command to step down, we moved so fluidly that my moments of worry dissolved in an instant. I was already several feet along the path before I could process what had held me back. Once I decided to trust, the obstacles disappeared. Steps up and down, crowded sidewalks, random signposts—these are now just arbitrary pieces of a world that York and I travel smoothly and confidently together.

York and I are an inseparable team in the most mundane and extraordinary places. From our favorite coffeeshops to the university campus where I teach, from the symphony and art museum to the regional stage at an a cappella singing competition, York is my constant companion. This year, we made our debut on the TEDx stage, giving a talk on disability and collaboration—and as far as I can tell, he is the first guide dog to grace this famous venue.

I knew that York would bring me a greater sense of independence and adventure, but I had no idea how his presence would transform my heart. It is not just that York helps me or that he has given me a way to express deep love and affection. York, like any partner worth having, challenges me to be the best version of myself.

When I would rather choose a quiet well-known path, York demands a crowded sidewalk full of obstacles. When I would rather stay on the sidelines, York demands attention. People stop to ask about his training or tell me how beautiful he is. On one memorable occasion, a woman sprinted across a hotel restaurant to meet us: she turned out to be a former puppy raiser for Southeastern and she was thrilled to see a guide dog team in action!

Perhaps what is most exciting for me is the picture York and I present when we work together. York and I are often the first blind woman-guide dog duo to appear on the conference panel, at the competition stage, in the coffeeshop. Though it seems like service dogs are everywhere, disabled people are still woefully underrepresented in professional and social settings. York and I get to show people that inclusion isn’t “special” or “exceptional”: we get to set a new norm, raise the bar for disabled people everywhere. With the simple act of walking up to a counter and ordering coffee, we teach the world that blind people can be just as competent and worthy of respect as anyone else.

But with York, it never stops at respect. He works so hard with me because he loves me, and this is a love that completely overwhelms me. It is as powerful as a symphony, as beautiful as a night full of stars. It’s a love I can never hope to measure or comprehend. But it’s a love I will spend my whole life trying to return.

Every time I grab my purse or put on my shoes, York runs to his special rug and waits for his harness, tail wagging. Every time we step out of the car, his nose sniffs the air, exploring. He sees the harness, and he turns from a wiggly explorer into a serious, focused companion. The harness slips on, and his body language says, “I’m ready for this.”

If you’ve never wrapped your fingers around the square end of a guide dog’s harness, if you’ve never needed to place your trust in a furry four-legged genius, it can be difficult to fathom the impact a guide dog has on the life of a blind or visually impaired person. Our dogs help us find independence, confidence, and self-worth. By extending an incredible network of dedicated humans, they teach us that our lives have value.

Your gift does not just help us be more independent. It helps blind people reclaim their dignity and their self-determination. Your generosity reminds us that people believe in us and that we should believe in ourselves—that our greatest joys and successes derive from profound collaboration. None of us is meant to strive alone: we all need to hold onto someone. I am honored to be working with York—and with the community of trainers, sponsors, and puppy raisers that made this brilliant partnership possible.

Sincerely,

Emily K. Michael, with York

10-14-16-em-york

45 in 2016: What I read this year.

It’s been a busy year for me, but I’m proud to say I met my Goodreads goal: 45 books! Check ’em out! Some were duds, but most were wonderful. I’ve written brief reviews beneath the ones I really enjoyed.

  1. Provence, 1970:M.F.K. Fisher, Julia Child, James Beard, and the Reinvention of American Taste by Luke Barr
  2. Must Love Dogs by Claire Cook
  3. A History of the World in 6 Glasses by Tom Standage
    Fun, fascinating, and entertaining! If you love food and history, you’ll enjoy this book!
  4. Gratitude by Oliver Sacks
  5. Letters on Life by Rainer Maria Rilke (trans. Ulrich Baer)
    A meditative and delightful collection of Rilke’s prose thoughts on love, death, nature, art, and so many other wonderful topics.
  6. Yes Please by Amy Poehler
    Funny, thoughtful, and surprising—I loved listening to Amy Poehler read this audiobook. There is real substance here.
  7. Consider the Fork: A History of How We Cook and Eat by Bee Wilson
    Though this book is a bit slow in places, it is fascinating and thorough! Wilson begins before pots and pans, travels through French renaissance kitchens, and explores molecular gastronomy.
  8. Next Word, Better Word: The Craft of Writing Poetry by Stephen Dobyns
    Incredible! Thorough, down-to-earth, and detailed. I underlined something on every page and stopped mid-chapter to write my own poetry. I recommend this book for all poets! I especially loved his final chapter on linguistics.
  9. Is Everyone Hanging Out Without Me?  (And Other Concerns) by Mindy Kaling
  10. Mind of the Raven: Investigations and Adventures with Wolf-Birds by Bernd Heinrich
    An outstanding narrative exploration of ravens! Compelling stories, philosophical observations, and exciting discoveries—all expertly written.
  11. The Spell of the Sensuous: Perception and Language in a More-Than-Human World by David Abram
    Completely absorbing! Abram traces the evolution of the alphabet, the debate between oral and writing cultures, and the effects of the alphabet on our relationship to the wild world. Absolutely extraordinary.
  12. e.e. cummings: A life by Susan Cheever
    A perceptive and captivating literary biography interspersed with the poet’s work.
  13. Stumbling on Happiness by Daniel Gilbert
  14. Heartburn by Nora Ephron
    Listen to Meryl Streep read the audiobook. Totally worth it! It’s a cute, well written story.
  15. Welcome to Subirdia: Sharing Our Neighborhoods with Wrens, Robins, Woodpeckers, and Other Wildlife by John M. Marzluff
  16. Object Lessons: The Life of the Woman and the Poet In Our Time by Eavan Boland
    Boland explores the struggles of being a female poet in the very male tradition of Irish poetry. This is a fascinating contemplation of a writer’s motivation and origin—how she can build something value from a tradition that has excluded her.
  17. Essays in Love by Alain de Button
  18. Writing Wild: Forming a Creative Partnership With Nature by Tina Welling
  19. Anam Cara: A Book of Celtic Wisdom by John O’Donohue
  20. When You Are Engulfed in Flames by David Sedaris
  21. A Writer’s Diary by Virginia Woolf
  22. Planet of the Blind by Stephen Kuusisto
  23. The Forest for the Trees: An Editor’s Advice to Writers by Betsy Lerner
  24. Blind Rage: Letters to Helen Keller by Georgina Kleege
    Kleege is a reflective, capable writer. This book is a fantastic meditation on Keller’s life and cultural legacy!
  25. Fruitflesh: Seeds of Inspiration for Women Who Write by Gayle Brandeis
  26. Doctors: The History of Scientific Medicine Revealed Through Biography by Sherwin Nuland
  27. On the Move: A Life by Oliver Sacks
    I’ve always enjoyed Sacks’s writing, and his autobiography was no exception. I appreciated hearing about his own struggles as a physician and writer, but I didn’t enjoy the overall structure of the book.
  28. The Practice of the Wild by Gary Snyder
  29. Eavesdropping: A Memoir of Blindness and Listening by Stephen Kuusisto
  30. Happiness Is an Inside Job: Practicing for a Joyful Life by Sylvia Boorstein
    Warm, inviting, and practical.
  31. A Walk in the Woods by Bill Bryson
  32. The Organized Mind: Thinking Straight in the Age of Information Overload by Daniel Levitin
  33. The View from the Cheap Seats: Selected Nonfiction by Neil Gaiman
    I have a soft spot for poets writing prose and sci-fi/fantasy writers writing nonfiction, and this collection does not disappoint! Gaiman covers everything from journalism and film festivals to his favorite influences in science fiction and fantasy.
  34. Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Love, Live, Parent, and Lead by Brené Brown
    Encouraging, systematic, and fortifying! I loved reading this book—it’s way too good to be called “self help.”
  35. Acquired Tastes by Peter Mayle
  36. Would You Baptize an Extraterrestrial?: . . . and Other Questions from the Astronomers’ In-box at the Vatican Observatory by Guy Consolmagno and Paul Mueller
  37. The Geek Feminist Revolution: Essays by Kameron Hurley
    Ardent, biting, and analytical! Hurley’s collection of essays is full of passion and personality!
  38. The Glamour of Grammar: A Guide to the Magic and Mystery of English by Roy Peter Clark
    A lovely light read on English grammar and writing. I learned a lot and would love to assign this book to a class!
  39. The Three Marriages: Reimaginating Work, Self, and Relationship by David Whyte
    A rich and rewarding combination of personal history and literary biography.
  40. The Genius of Birds by Jennifer Ackerman
  41. Beauty: The Invisible Embrace by John O’Donohue
    This is a lovely collection of meditations on sensory experience. Though I enjoyed Anam Cara, I found Beauty much more engaging.
  42. TED Talks: The Official TED Guide to Public Speaking by Chris Anderson
    An engaging introduction to presentation literacy. Anderson covers many of the how-to’s of setting up and delivering a TED Talk—as well as profiling several of the best TED speakers and talks.
  43. League of Dragons (Temeraire #9) by Naomi Novik
    A not-terribly-thrilling end to the fabulous Temeraire series. Solid but unremarkable.
  44. How to Be a Tudor: A Dawn to Dusk Guide to Tudor Life by Ruth Goodman
    Utterly fantastic! Goodman covers Tudor fashion, food, living arrangements, and so much more! The book is well researched and well written! I enjoyed the meticulous details!
  45. More Home Cooking: A Writer Returns to the Kitchen by Laurie Colwin
    Another book of fun and pithy kitchen essays. I love reading Colwin’s strong opinions on everything from picnic fare to gingerbread.

So what’s on the list for 2017? Probably more of the same. Books on poetry, food, language, birds.

Have a recommendation? A favorite book or a recent read? Share in the comments below!

Poet’s Mind

If you want to understand what it is to be a poet, spend time with people who consider themselves unpoetic—people who feel defeated or confused by poetry. You will keep bumping up against that thing that separates you. It feels like a low cement wall.

The essential separation borders a world where every question has one answer, where every effect has one cause. And that’s decidedly different from the world you believe in, the world you want to live in, the world you know is true. In the poet’s world, everything has multiple answers— not because everything is relative, but because discovery and learning help you see what you thought you understood in a novel light. A new way. You understand that the truth you took for granted is now being filtered differently. It is still true, but it is more true. It is true in a way that envelops more of your experience.

You write because you want to dwell in possibilities, to step over a threshold of autobiography and facts and into a place of identity and soul-making. A place where souls can touch other souls outside of time. A place where an epiphany from 200 or 2000 years ago may still have something to teach you. A place where “right” is not the same as “finite.”

You realize that as a poet working and writing in the world, you have the chance to be extended, lifted up and out, expanded. You realize that when you step into that bigger “I”—not your “I” that agonizes over what to wear to work or whether to stop for coffee—when you take the hand of the big “I,” give your talents over to it, you’re taking the hand of your God. That your work might speak to thousands beyond yourself, that it might reach farther than your physical hands could actually reach. And what other name could there be for such expansion than the name of God? Of a force that brings meaning to a mass of atoms and stardust?

So you wonder how others can be closed off to this feeling, this invitation to an expansive self, this response to an initial Creator and creative spark. You ask, did I invite God or did God invite me? You wonder whether, in a search for the finite rightness of things, others are shutting out the sacred.

Because the sacred is unruly. It’s not facts and lists and statistics. It’s a network of finely spun vitality, and once you accept it, you’re in. You’re there. You can’t abandon the sacred. Recognizing the sacred invites you to reconsider all life. You accept the sacred, you accept responsibility.

A poet accepts responsibility.

Watch my presentation: “Creative Activism: The Poetry of Disability and Disclosure”

In November, I participated in the Brown Bag Series hosted by UNF’s Sigma Tau Delta (English Honor Society). I had the opportunity to read my work and discuss the challenges and joys of writing as a blind poet. Here’s what it’s about:

As a blind poet, Emily K. Michael understands the politics of disclosure. Publishing in disability journals and mainstream literary magazines, she hopes her work will introduce a new story of blindness into genres where disability is seen as irrevocable tragedy or simplistic blessing-in-disguise. But this activism requires a sense of balance, a poem that doesn’t preach. Michael discusses the decisions that shape her process—from creating a poem to seeing it published. She outlines the pressures facing disabled writers and develops her poetics of protest.

Check it out!

Watch my TEDx Talk, “The confluence of disability and imagination”

About a month ago, I gave a talk as part of TEDxFSCJ: Engage. The process involved a lot of work—rehearsals, revisions, workshops—but it was an incredible experience. I was blessed with the TEDxFSCJ crew to guide me, including a test audience and awesome speech coach!

Here’s how the video is described on YouTube:

Today one hears a lot about disabilities and about how best to talk about persons with disabilities, but Emily Michael believes there is no one term, definition, or “right way” that makes every disabled person feel comfortable, included and worthy. Drawing on her experience living and working as a blind poet, Michael urges us to resist simple dichotomies, whereby disabilities are either downplayed as mere inconveniences or magnified into epic tragedies. Instead, we should learn to negotiate one another’s disabilities as we do any other fact about a person—through dialogue, openness and understanding.

Now for the big reveal…You can watch my TEDx Talk below! Enjoy!

Guest Post: On Writing a Film Review

Jacob Lusk is a Jacksonville, Florida native, a high school English teacher, and an amateur film critic, who writes about movies on his blog,  The Panned Review. You can follow him on Twitter. Check out his tips and suggestions for composing a film review.

Some Suggestions for Writing a Good Film Review

  1. Watch the film actively. Even if you’re writing about a movie you’ve seen before, watch it again and take notes. Taking notes while watching a movie may seem strange, but it helps. When it comes to note-taking, there are no bad notes. Write down any thoughts that come into your mind as you watch, write down dialogue that stands out, write down observations, no matter how slight: the color of someone’s scarf, the dim lighting in a room and the way that lighting exposes a character’s silhouette; the way a scene goes from sad to funny and back to sad again. These notes may or may not be useful later, but taking them ensures that you’re giving the film your full attention.
  2. Getting Started: Finding a Through-Line. With a review, you may find yourself scrambling to think of something to say other than, “I liked it,” or “I didn’t like it.” So ask yourself, “What about this film jumps out at me as the most interesting or noteworthy element?” Maybe the movie itself was junk, but a particular actor’s performance was so good you didn’t mind; maybe the film was a mess, but you admired that it tried so hard to break from conventions; maybe the writing felt incoherent, and that ruined the whole movie for you. Find the specific thing that speaks to you, and you’ll have a place to start.
  3. Getting Started: Just write something. If you’re struggling to “start” your review, try writing about any aspect of the movie, and remind yourself that you can always re-arrange paragraphs later. Maybe you don’t know how to begin your review, but you can likely write about specific elements of the film that would go in the middle of it. You can worry about the introduction later. And in the process of writing the middle, you may find all kinds of new insights you didn’t know you had.
  4. The review vs. the summary. If you’re putting on the critic hat, remember that plot summary shouldn’t be your primary goal. Yes, a few details about the movie are helpful for readers who haven’t seen the film–or even those of us who have, and might have forgotten them–but the bigger, more important, and more interesting job is making connections and judgments about the movie that are sharp and thoughtful and that give the reader a fresh perspective on the movie. As Pauline Kael says, the job of the critic is to help the reader see something about the work that s/he didn’t see before. And of course, you should try to persuade the reader why the movie is worth seeing (or skipping).
  5. Find fresh, vigorous, specific ways to describe the movie. Cliches like “roller-coaster ride” and “on the edge of my seat” have lost any power that they might have once had. They’re vague and dull anyway, so don’t use them. Instead, be specific. Try to get at the heart of what makes a movie work or not work. If a movie was genuinely suspenseful, talk about a specific scene that exhibits this quality; talk about your own response, and if you saw the film with others, you may even want to write about their reactions: did the audience jump in unison during a terrifying moment? Did everyone jeer at the screen when a character did something stupid (like walk up the stairs of the dark, spooky house, when she ought to know better)? Find a way to make the experience of watching the movie come alive to the reader who wasn’t there in the theater/living room with you.
  6. Don’t read other reviews of the movie you’re reviewing. The opinions of other critics will likely influence you whether you want them to or not, and you want your work to be original.
  7. Exception to #6. One way to write a strong review is to forcefully disagree with another critic. Perhaps you thought Owen Gleiberman’s review of The Martian was all wrong, and you’re here to set the record straight. That could make for a compelling through line.
  8. But what should I write about? How should my review look? There is no one right way to write a film review. There are so many elements in play: your own response will dictate the nature of your review; in addition to that are all the elements of a film: the acting, directing, writing, editing, cinematography, makeup and effects, music, costumes and sets; there’s also the structure of the film, the themes at work in the film, the conversations being had about the film by filmmakers, critics, industry people, and regular moviegoers. If the movie is part of a particular genre, you may want to evaluate it in the context of other horror movies or comedies; if it’s a sequel, you might want to compare it to its predecessor(s); if it’s a comic book movie, you’ll likely be thinking of it within the greater comic book universe. If it’s an adaptation of a book, and you’ve read the book, you may want to compare the two. (Although please avoid saying “the book is always better” because that is a cliche; give specific reasons instead.)
  9. Write to a general, educated movie-going public. No matter what, make sure what you’re saying makes sense and is specific. Using pompous language–especially lots of film jargon–often impedes these two goals. It’s one thing to describe a particular shot of a film, it’s another thing to overuse words and phrases like “tracking shot” or “foley mixing.” (Occasionally a phrase like that might be necessary, but usually it’s not.) Most readers won’t be familiar with these terms, and your goal should be to invite readers into your review rather than alienate them from it. Also, assume your reader is intelligent enough to come along with you for the ride.
  10. Analyze, don’t moralize. You may have been taught that analyzing literature and film is ultimately about identifying the moral of the story. But boiling texts down to a one-sentence bumper sticker statement like “Be careful what you wish for” or “Don’t take anything for granted” is a simplistic reduction. If a movie really is that simplistic, it’s often a sign that the movie has been overly compromised by studio heads wanting to appeal to a global audience. (This happens a lot.) It’s not a cause for celebration when a movie bravely reminds us to “see the glass as half full.” A movie should illuminate something about the human experience, and it certainly might criticize injustice or other social problems, and as a critical writer, you want to discern between trite moral lessons and complicated depictions of real life. Even fantasy films have something to say about reality (calling Doctor Strange). How does a movie speak to us about real life? Is its tone poetic? Angry? Curious? Terrified? Explore these avenues, and resist the urge to oversimplify.

Other Random Tips

  • Use active verbs in the present tense [fashions, jolts, arranges, redeems, scowls, frets, maneuvers, obliterates, renounces].
  • Avoid seems and appears. They tend to weaken our writing. [“Director Sam Mendes seems aware of our culture’s current need to psychoanalyze movie heroes to death.” → “Director Sam Mendes understands our current need to psychoanalyze heroes to death, and he subverts this impulse at every turn.”]
  • Avoid very and extremely and other intensifiers. Very scary? Terrifying. Very slow? Sluggish. Very serious? Morose. Somber. Extremely dark? Dark.
  • Avoid phrases such as “Chris Evans does a good job playing Captain America.” You’re not giving Chris Evans his job evaluation. Instead, describe specific characteristics that stand out about a performance or any other element of the movie.

My interview with the Eyes On Success podcast!

A few weeks ago, I was interviewed by Nancy and Peter Torpey from the Eyes On Success podcast. Eyes on Success interviews blind people from all over the world about their careers, passions, hobbies, and challenges. I had a blast doing my interview! I was excited to discuss teaching, writing, and publishing!

My interview was released in today’s episode. Listen here. You can also subscribe to Eyes on Success in iTunes.

Presentation Notes for SAMLA 88!

On Saturday, November 5, my colleague Michele Boyette and I will present the workshop “Insensible Paradise, Invisible Nightmare: Complicating Embodiment in the 21st Century Classroom” at the 88th SAMLA conference! We’re looking forward to an exciting 90 minutes of analyzing disabled character tropes, evaluating accessibility statements, and brainstorming effective communication strategies. Want to see what we’ll be doing? Check out our handout!

Click this link to download the PDF: samla88handout_michael

October Interview: Spark, Startle, Enlighten!

Dr. Sheri Wells-Jensen, age 53, is an  associate professor in the Department of English at Bowling Green State University (in Bowling Green, Ohio).  She teaches technical linguistics courses for people who wish to teach English to speakers of other languages.  She says it’s a marvelous job: “I sort of love it.”

She has a scattering of background hobbies such as bread baking, knitting, whittling, and reading good science fiction and nonfiction science books.  And she likes standing on beaches feeling simultaneously small and exalted.

But music is what takes up most of her free time and makes a good try at her non-free time as well.  She’s one of the Grande Royale Ükulelists of the Black Swamp, a strumming, picking, harmonizing, rock-and-rolling, song-writing, carrying-on quartet which is maybe the most fun she’s ever had; go to http://www.grubsmusic.com for all the happy details. Find her and her band on Facebook and iTunes!

How would you describe your vision or blindness? Is it congenital or has it developed recently?

I have been blind since birth.  I could perceive a little light and color as a small child, but lost all light perception more or less around age 12.  Although I have no external light perception whatsoever, what I perceive visually now — perhaps due to some ongoing random stimulation of my retina — is unpatterned brightness in a variety of colors which I can no longer accurately name but which I have learned to control to some extent.  This is sometimes very disorienting and sometimes moderately interesting.

Do you use a cane, guide dog, or other mobility aid to get around? Why have you chosen this aid?

I use a cane.  Always and only a cane.  Although I love dogs, I prefer to get into my own mischief.  I can also tolerate the foolish things sighted people say to cane travelers better than I could tolerate the foolish things they say to dog guide users.  The cane is so much a part of my identity that I sometimes find myself stopping when reading an action sequence in a book thinking: “Wait! If he’s running down the hall, and he’s got the alien artifact in one hand and his laser rifle in the other, how is he holding his cane?” Yeah … I know.

What is the most consistent challenge or frustration you experience with your blindness? How do you handle it?

To start, I’m going to sound like a very broken record here — or perhaps today we say a skipping CD — the most consistent frustrations I face related to blindness are the public’s bizarre, distorted ideas about blindness, and their perverse inability to notice, examine, and discard those ideas. They are fiercely ingrained, and anything that contradicts them is dismissed as an “exception to the rule” rather than evidence that the rule itself is faulty.

For example, I was appalled by the dependent blind character in Anthony Doerr’s All the Light we Cannot  See, but many of my sighted friends had no trouble with her passivity or her literal inability to put on her own shoes. What I read as destructive stereotypes went unnoticed by most of them.

If, to take another example, I talk to my students about prejudice against disabled people and negative stereotypes about blindness in particular, the majority regularly inform me happily that these no longer exist: “You have a good job,” they say, and that finishes the deal for them. I become silent. What am I supposed to say?

So, I suppose my problem is that the harmful stereotypes that keep 70 percent of blind folks unemployed … simply do not exist in the minds of sighted people. They are omnipresent and thus invisible.

How do I handle it? Increasingly, I write. I try to let the experiences which enrage or frighten or dismay me flow in and out through my fingers.  I feel like … I hope that … it helps. And, maybe, if I keep doing it, these little sparks born of frustration will fly out and startle, or enlighten, or bring hope … or set fires. Here, for example, is a YouTube video I recently made in response to the destructive yet perversely popular #HowEyeSeeIt campaign from the Foundation Fighting Blindness:

 

What resources have helped you to handle your blindness best, either in everyday matters or in moments of crisis?

There are, of course, my indispensable friends who hold space for me in the ordinary/extraordinary way that people can do for each other. (I hope that this is everybody’s answer to this question.) Beyond this, my very own front line defense against despair, rage, and exhaustion is dropping into wordless music. It’s planless: I don’t know if it’s the playing or the waiting to hear what will be played, but a space is cleared around me when I pick up an instrument to play and let go of whatever else I’m carrying. I can feel the day receding and the space opening, and afterward, I’m both more distant from, and more entirely a part of, whatever it was that set me off. It’s a connection that gives me courage and serenity, and inspires musings that are sometimes inexpressibly sacred and sometimes very satisfyingly profane. It is my power source.

What would you say is the most harmful or annoying belief that people have about blindness? How would you change this belief?

The belief about blindness that harms me most often is that blind people are viewed as basically useless in most situations. If there is a table to be moved, or something that needs retrieved from a high shelf, or even a long line to stand in, I am offered a chair while the work goes on around me … “Because it’s easier.” When I hear “because it’s easier”, I also hear exclusion from responsibility and isolation from the community.

And, horribly, part of me has gotten used to it. I’m so conditioned to things being inaccessible that I am not the first to jump when someone yells, “Who can get this?” If I’m standing at the side of a soccer field, and a ball rolls my way, I often stand unmoving, unwilling to risk diving for it, even though diving for it would be the fun thing to do. And I know why. I grew up in the same culture as everyone else, absorbing spoken and unspoken information about race, gender, and ability along with my language and my style of dress. These beliefs are everywhere, and I know that my own little acts of education or compassion or assertiveness are not going to sweep them all away. But I’m still hopeful; as Martin Luther King, Jr., said, “You can’t stop the birds from flying over your head, but you can keep them from building a nest in your hair.” So, that’s what I do: I spend my days birdwatching and tending my tresses.

What is a book that you could read over and over again? Why do you feel this way about it?

The Sparrow by Mary Doria Russell. What can I say about this book? The blurb pulled me in: “Puerto Rican Jesuit linguist in space”. For real. Who would not love that?But the bit that fixes the attention is not the well-wrought story or the lovely prose; it’s a story about people who leap guts-first into life, struggling together with humor, compassion, grace, and dignity to do the right thing, and (quasi-spoiler alert!) when they fail, reassembling with courage and humility.  Ms. Russell asks the big questions, and the answers — when there are answers — are complex and beautiful. Rereading this book restores my faith that people are good, smart, and will work toward justice and peace … once they understand what that is.

What is one dream you hope to accomplish in the next 10 years?

The next ten years? I’m still sort of figuring out Saturday.

I would like to become a more precise and effective voice in the ongoing struggle for equality for disabled people, and in case that sounds too pretentious, I would also very very much like to become a more expressive and powerful musician and make more and better music. I would like to continue to simplify my life so that I can concentrate my attention on the things I can do that might make a difference. That, and please let me go back to Hawaii again where I can practice being small and exalted for several uninterrupted days!

What topics do sighted (or blind) interviewers usually ask you about? What topics would you prefer to discuss?

If you had asked me about interview questions when I was 25, I would have said that journalists are incapable of detecting any kind of complex human existence beneath the dazzling light that reflects off a white cane. Everything I did had to be about blindness. Now, though, I seem to have emerged into new cultural territory. The media feeds on young disabled people who they can present as inspiring or old disabled people who are either heroic or poignant. In the middle, blindness, at least, is less interesting. I stopped being a prototype around 30, I think: middle-aged blind women aren’t as useful for inspiration porn, and my children are old enough now that nobody thinks to ask me how I raised them. So, in many ways, I am freer now than I have ever been before to be a linguist, musician, or anything else I want to be … and maybe because of this freedom, I am now actually ready and willing to talk about blindness. However, it is often clearly communicated to me that what I want to say about blindness is not nearly as welcome as the things they want to ask about blindness. But I’m not a young woman just starting to sort through these things any more; now, I’m a much older and stronger woman … with a power source, and an increasing desire to swat birds out of the sky.

 

A sneak peek at my TEDx Talk and a radio spot for Blindness Awareness!

I’ve got some exciting things to share!

First up are two short promo videos I did for TEDxFSCJ: each one offers a sneak peek at my upcoming talk, “The Confluence of Disability and Imagination.”

Here’s the first promo:

And the second one:

If you’re interested in coming to my performance of the talk, I’ve got the details for you.

When: Tuesday, October 18, at 2:30PM

Where: FSCJ Downtown Campus, A1068 (the auditorium off the lobby)

In a similar vein, I spoke with a local reporter today about guide dog etiquette. My spot aired on the radio this afternoon. You can read and listen here: Jacksonville Blind Woman Talks About Service Dog Etiquette.

I’ll Be at TEDxFSCJ in an Unconventional Way!

My Dear Readers:

I was accepted to speak at TEDxFSCJ here in Jacksonville on October 8. However, Hurricane Matthew came to town (I guess he heard about our impressive lineup of speakers), so our event had to be postponed!

TEDxFSCJ has been rescheduled for Saturday, November 5, but I will be speaking at SAMLA 88 that day. As I’ve yet to find a way to occupy two places at once, I’ll be performing my TEDx talk ahead of time so it can be shown at the main event.

I’ve been given the opportunity to perform and record my TEDx talk on Tuesday, October 18 at 2:30pm at FSCJ’s Downtown Campus. My talk is called “The Confluence of Disability and Imagination.”

If you can come, I’d appreciate it! This is an awfully big auditorium, and I won’t have the benefit of all the enthusiasts who arrive to hear my fellow speakers. I’d love to give this talk to a live audience.

Please spread the word and come if you can!

 

October Interview: Faith in a Life After Loss

April Ogden, age 45, is a full-time manager with the Florida Department of Education in Northeast Florida. She enjoys reading and traveling. You can learn more about her on her LinkedIn page.

How would you describe your vision or blindness? Is it congenital or has it developed recently?

I was diagnosed with Glaucoma during December of 1989,shortly after graduating from Douglas Anderson School of the Arts, a performing arts high school, in June of 1989. Previously, before December of 1989, I had not experienced such significant vision loss. Over the years, and more specifically, after the birth of my two children, my vision slowly began to decline. My depth perception began to fade, and later I experienced a severe decline in the loss of my central vision.

What was once seen with my eyes as thick black bold print on a sheet of paper, over time became a faded thin black line, which eventually became an all-white sheet of paper. No matter the number of characters on a page demanding my attention, my vision only allows me an opportunity to see a blank sheet of paper, at best on a good day. My vision fluctuates from day to day, and some days, I’m unable to even see the sheet of paper at all.

Do you use a cane, guide dog, or other mobility aid to get around? Why have you chosen this aid?

I use both a white cane and sighted guide in order to assist me with my orientation and mobility needs. I use the white cane to travel independently and safely in familiar areas.  The sighted guide is used when I am in an unfamiliar area.

What is the most consistent challenge or frustration you experience with your blindness? How do you handle it?

I have certainly experienced my fair share of challenges. I would have to say the challenge that bothers me the most is a challenge I experience consistently in professional settings.

I am a very independent individual. In a professional setting, I require very little assistance. I call this level of independence my coat of colors. This phrase refers to a person’s inability to understand another person’s knowledge, skills, talents, and abilities, without focus on the vision limitations.

The challenge for me in the past was that I became aware that many sighted persons had low expectations of those who are blind or visually impaired. The majority of the individuals without vision limitations do not believe in this notion; however, there are enough individuals who think like this to perpetuate the lack of advancement of well qualified individuals who are able to contribute to a conversation, project, the progress of an agency, and so much more.

By communicating, demonstrating, and educating individuals more about me and the strengths that I possess and/or the areas in which I may want assistance, I’ve been able to work more closely to help others understand that people with unique abilities are just as deserving of an opportunity to be successful and live meaningful lives as their non-unique ability counterparts.

What resources have helped you to handle your blindness best, either in everyday matters or in moments of crisis?

I have found that having a great support system is key. You have to balance the use of your support system. Relying too much on your support system enables you to be more dependent and less independent. Your support system should be aware of the resources to assist you in being more independent. For example, a family member could contact the local State agency for the visually impaired or blind to learn more about resources to help an individual to become independent. Moreover, a member of your support team may contact a local Community Rehabilitation Program, to learn about resources for individuals with vision loss. There are so many resources available to educate families, support teams, and most importantly, the individual living with the vision loss.

As your independence grows, you should expect the structure of your support system to change. What I described above, is a support system for someone new to vision loss or who has experienced a decline in vision.

My husband, children, and family members have all been an excellent support system for me.

What would you say is the most harmful or annoying belief that people have about blindness?  How would you change this belief?

The most harmful belief that people have about blindness is that people who are blind are satisfied with mediocracy. We are not, and we want more than just an opportunity, but we want an opportunity to exceed the expectations of others.

What is a book that you could read over and over again? Why do you feel this way about it?

The Bible is a book that I could read over and over again. Throughout the pages, countless examples of changing one’s prospective is provided to the reader. Examples of how to recognize and face a challenge are displayed all throughout the Bible. The ability to face a challenge and overcome that challenge is so important to me.

What book, person, or perspective makes you feel most centered?

For me, it is my Bible. My faith in God, has been a part of who I am before my sight loss as well as after my sight loss. It has not only encouraged me, but it’s allowed me the chance to encourage others.

What is one dream you hope to accomplish in the next 10 years?

The many dreams that I will accomplish in the next 10 years is that I will work in a Senior Leadership role within the federal or state government. My work experience and education supports this goal. In this role, I will be able to create effective policies, procedures, and standards that will promote the advancement of individuals with cross disabilities. I will be able to be in a position where I’m evaluating overall agency programs and services. Most of all, I want to have a significant positive impact on the lives of others who are faced with what I’ve overcome

What topics do sighted (or blind) interviewers usually ask you about?

Usually the questions are limited to rehabilitation technology, and the discussion of how did I lose my vision. Rarely do I have an opportunity to discuss life after vision loss. It does exist!

What topics would you prefer to discuss?

I was satisfied with the list of questions presented. It provided me with an opportunity to express myself.

October Interview: Understanding Begins in Presence

Jennifer Pearlstein, age 26, is a graduate student in Clinical Psychology at University of California -Berkeley. Outside her professional life, she enjoys reading, running, and spending time with her dog. She has recently started a blog on issues related to vulnerability and identity.

How would you describe your vision or blindness? Is it congenital or has it developed recently?

I describe myself as having low vision. I was diagnosed with a form of early-onset macular degeneration at age 17. My vision progressed passed the threshold of legal blindness within a couple years. My central vision is very poor – I see a gray fuzzy blur when I look directly at something. However, I have functional peripheral vision.

Do you use a cane, guide dog, or other mobility aid to get around? Why have you chosen this aid?

I recently received orientation and mobility training and have since begun using a cane. I generally use an ID cane at times when my vision is weak, such as at night or when the glare from the sun is particularly bad. I also gravitate to using my cane when traveling in unfamiliar places, shopping alone, and various other contexts in which it helps me for those around me to be aware of my low vision. My dog is a trained service dog (not a guide dog), performing tasks centered on helping me navigate crowded spaces, perceive depth, and regulate my low-vision related anxiety. Although I still use him in lieu of a cane when traveling and hiking, I do not use him daily anymore; primarily because he required guidance and attention that distracted me from my environment.

What resources have helped you to handle your blindness best, either in everyday matters or in moments of crisis?

I started working with the Department of Rehabilitation about a year ago, and they have been instrumental in introducing me to resources. Beyond technology, Braille, and orientation and mobility, working with the DoR has enabled me to connect with others experiencing low vision and blindness. The practical aides of technology – many of which I truly could not succeed professionally without – and the connection to others in the community makes the DoR a phenomenal resource.

What would you say is the most harmful or annoying belief that people have about blindness?  How would you change this belief?

I see the most harmful and annoying belief as having two parts: first, that people experiencing blindness or low vision are defective and second, that overcoming the limitations imposed by blindness is incomprehensible and inspirational. The ramifications of these beliefs range from outwardly and obviously offensive (i.e. strangers making derogatory comments) to the subtle and unintentional (i.e. family, colleagues, and friends referring to my way of completing tasks as unfathomable and remarkable). I realize the intention is generally compassionate, and I acknowledge how challenging it is to strike a respectful balance between acknowledging how a disability impacts individual identity while simultaneously not defining an individual by the presence of a disability. Nonetheless, this belief stigmatizes the blind as being different from “normal.” Perceiving the way the blind navigate the world as incomprehensible further denotes an “us” – the sighted, and a “them” – the blind.

I think correcting this belief involves a shift towards showing blindness as part of normal experience for millions of people. The media and popular culture generally (1) ignore people with disabilities, (2) portray people with disabilities as decrepit and (3) depict disability as an experience foreign and impossible to imagine. Publicly revealing the blind are just people. We are friends, parents, professionals, athletes, and artists. As is the case with any marginalized group, the blind are underrepresented politically, culturally, and in the work force. Until we are seen, we will continue to be misunderstood.

What is a book that you could read over and over again? Why do you feel this way about it

I am generally most attracted to nonfiction, especially memoirs. However, I am also a fervent Harry Potter fan. When stressed by life, I gravitate to rereading the series. I grew up reading these books, and feel nostalgic when reading them. I cherish the characters, disappear in the magical wizarding world, and deliberate on the broader implications of the themes. I appreciate the series both for its entertainment value and for the important messages embedded throughout.

What is one dream you hope to accomplish in the next 10 years?

I aim to graduate with my PhD!

What book, person, or perspective makes you feel most centered?

I feel centered by mindfulness. I find reading, practicing, or learning more about self-compassion, non-judgment, and focus on the present grounding.

I am most attracted to these themes in the context of individual authenticity One example that comes to mind is Kay R. Jamison’s An Unquiet Mind: A Memoir of Moods and Madness. Dr. Jamison powerfully reveals her personal experience with bipolar I disorder while simultaneously sharing her professional expertise as a clinical psychologist. I admire her for taking the chance to be exceptionally vulnerable. I get the privilege of revisiting this gem often through my research and clinical work and every time I reread this, I gain a more profound understanding of the science and phenomenology of bipolar disorder. Works like these that weave together informative content and portray a unique facet of human experience are particularly striking to me.

October Interview: Scholar, Teacher, and Guide

Eric Harvey, age 34, is a Ph.D. candidate at Brandeis University in Near Eastern and Judaic Studies. He studies the texts, religions, and cultures of ancient Israel, Syria, and Mesopotamia (what is now Iraq). He is writing his dissertation on a group of biblical Psalms which reused pieces of older texts. He lives with his wife Kristin, 2-year-old daughter Jane, and dog Faye in the San Francisco Bay area. For hobbies, he hangs out with Kristin and Jane, reads a lot, listens to too many podcasts, and enjoys strength training and yoga. Find him on Twitter and at his blog.

How would you describe your vision or blindness? Is it congenital or has it developed recently?

Both. I have always had low vision, but in the past four years it has begun to deteriorate in earnest. I have a diagnosis of Retinitis Pigmentosa, but it is unusual in that I am losing central vision first.

Do you use a cane, guide dog, or other mobility aid to get around? Why have you chosen this aid?

Our dog is a good dog, but she’s not a guide dog. In fact, she’s kind of an anti-guide dog, and she can get me into trouble when I try to walk her. So I have a cane. I don’t use it all the time, but more and more often I feel safer with it than without. I always use it now when I venture far from home or take BART.

What is the most consistent challenge or frustration you experience with your blindness? How do you handle it?

The unpredictability. I have a degenerative retinal disease, and my vision varies wildly from day to day, even hour to hour. Some days I can see and do certain things just fine, and the next I can’t. Also having to retool every habit and workflow that I have ever learned.

What resources have helped you to handle your blindness best, either in everyday matters or in moments of crisis?

Oh wow—so many. My family and friends first and foremost. My wife is a huge support and cheerleader. Knowing my daughter relies on me to show up and care for her every day keeps me centered and focused on living life day to day. The rest of my family has also been incredibly helpful, but I don’t want this to turn into an Oscar speech!
Also, books. I’ve been binge-reading blind-lit for the past few months. I love to read memoirs by blind people who refuse to be held back by their blindness.

What would you say is the most harmful or annoying belief that people have about blindness? How would you change this belief?

I think a lot of people feel there’s no right way to talk to us, like if they open their mouths at all their foot will inevitably find its way in. It’s true that people say a lot of dumb stuff to blind people. Blindness activists in the last century rightly fought against the open mockery and condescension with which blind people were often treated. Now in the post-ADA world, the political and social climate is such that people don’t voice those noxious opinions as much (even though some still hold them). Instead, people tend to tell us how inspiring we are. But disabled folks have pointed out (again, rightly) how hard those comments are to hear over and over, how they objectify us and betray the speaker’s diminutive expectations for us. So now I think sensitive, thoughtful people are afraid to say anything at all, lest it cause offense, and this is not really a solution. It prevents dialogue and understanding, and leads to a greater sense of isolation among the blind.

I’m not sure how to solve this problem on a societal level, but for myself I take it as a challenge to be a teacher and a guide to sighted people. Those of us who are blind know much more than the sighted about blindness—what it is, what it isn’t, and what it means to live with it. We have thought through all of these things because we have been forced to. Most sighted people know no blind people, and meeting us prompts them to think about issues of blindness often for the very first time. Whenever anyone starts thinking about any topic for the first time, their thoughts are bound to be simplistic and naïve. They ask us the natural first questions, the simple questions that we asked and answered for ourselves long ago.

When I hear those questions, I try to remember that this is what’s going on, and that this is a chance for me to teach someone about something new. I try to have an answer ready to questions that I hear more than once—not a snarky witticism that shuts the conversation down, but an answer that invites them to rethink their assumptions. It’s not easy, because a lot of these questions poke at our exposed nerves. It requires a kind of strength and self-awareness from us that the people we engage with often do not demonstrate. But I think the effort is worth it, if it leads to more engagement and connection between the blind and sighted worlds.

What is a book that you could read over and over again? Why do you feel this way about it?

I seldom reread books, because that’s time I could spend reading a whole new book. I’m a novelty junky. I do have the strange urge to reread a book right now, though, so I’ll mention that one: Gilead by Marilynne Robinson. It is a beautiful, nuanced depiction of family, generational strife, American religion, and small town life that unfolds in a series of letters from a very old Midwestern pastor to his young son. It ends up being about something unexpected that reframes the whole work in a surprising and poignant way.

What book, person, or perspective makes you feel most centered?

Honestly, I don’t know how to answer this one. I feel centered with my wife and daughter, or when I’m reading and engaging with new perspectives or new information, or when I’m alone and chewing on ideas from things I’ve read or heard, or when I’m doing yoga, or… I guess a lot of things make me feel centered. I feel decentered when I’m overwhelmed or pulled on from too many different directions.

What is one dream you hope to accomplish in the next 10 years?

I want to finish my Ph.D. and get a job teaching somewhere.

What topics do sighted (or blind) interviewers usually ask you about?

No clue. This is my first one!

What topics would you prefer to discuss?

I’m happy to discuss anything: my field, adapting to blindness, fatherhood (I’m the primary caregiver for my 2-year-old daughter), hobbies, the history of language, etc.

October Interview: Magic, Swimming, and Social Acceptance

Alan Brint, age 19, is a swimmer at Beloit College in Beloit, WI. He loves to read and watch sports. He describes his vision as light perception from Leber’s Congenital Amaurosis (LCA). He travels with a white cane. You can find him on Facebook as Alan Brint.

What is the most consistent challenge or frustration you experience with your blindness? How do you handle it?

Socially it can be hard to fit in sometimes. But even then I am not doing poorly in it. Sometimes I do not know what is going on when, but I almost always eventually figure it out someway, although it is not always a consistent way. I have to ask sometimes, which can be a bit embarrassing, but such is life.

What resources have helped you to handle your blindness best, either in everyday matters or in moments of crisis?

I tend not to use my blindness as a crutch ever—well except in a car, although my brother decided even that was an unacceptable place to call it a crutch when I was 13. Don’t worry, it was just a parking lot where he put me behind the wheel, and my parents had enough brains to almost take away his license. But now that he is 23 and I am 19, we have brains and we don’t do that, but I guess you can say that I go to my brother as my way of living “sighted.” But honestly, I have a good friend, Peter, who I go to with questions about blindness related stuff. Also, you would be surprised how receptive friends can be. It is more than you would think, even if they are not blind themselves.

What would you say is the most harmful or annoying belief that people have about blindness?  How would you change this belief?

It is extremely shocking how dumb people can be sometimes. People think we cannot get around physically. We have two legs that function just as well as most pairs of legs. We can do absolutely anything anybody else can do with our legs, just not necessarily in the same way as everyone else. People are always shocked out of their minds when they hear me say that, but unfortunately that is a good thing and I look for those reactions in people sometimes, it makes me feel really good.

What is a book that you could read over and over again? Why do you feel this way about it?

Harry Potter. I am rereading the books again. It is just such a universe, and I get immersed in it all the time. It is great. Who knows, the Foundation Fighting Blindness may not be needed anymore if J.K. Rowling can come up with a spell that will give full sight back to us? If you can think of it, please charge me in dollars for the wand, I do not have galleons, sickles or knuts in my pockets. I guess their hard work is for nothing…

What book, person, or perspective makes you feel most centered?

I love it when people believe that people can always do everything, just not necessarily the same way. This is the perspective that many of my friends have, and it makes me feel the best about myself.

What is one dream you hope to accomplish in the next 10 years?

I want to swim across the English Channel. I am not sure if any people have done it without sight, so it would be very cool. Plus, a challenge in the water is where I am most like me.

What topics do sighted (or blind) interviewers usually ask you about?

I typically am asked about swimming in interviews honestly. This is the time where I got interviewed the most. They ask me how I do it differently than most people, and the answer is simple and consistent with what I have said before: not that different. I don’t need to see the wall when I get used to a 25 yard pool.

What topics would you prefer to discuss?

I can talk about anything with any intelligent people. As long as your question doesn’t ask about my physical mobility, I am all in for anything!