One definition of legal blindness is having a visual acuity that is best corrected to only 20/200. That means that even wearing glasses, a person can see no better than 20/200 using the standard eye chart. It also means that a person who is legally blind may walk around without a white cane or guide dog, but nonetheless cannot read standard-size print. According to the CDC, more than 3.4 million (3%) Americans aged 40 years and older are either legally blind or low-vision, and in many of these cases, reading traditional physical books with their eyes is no longer an option.
“My mother/father/uncle/aunt is legally blind , and they’re depressed because they can’t read anymore,” is possibly the most common thing random strangers say to me. Because I’m blind, they want advice, sometimes, but most often they want me to commiserate somehow. They want me to tell them how horrible life is for their loved one now, but I won’t do that because I have technology, and technology has been pretty great for blind people.
In particular, book accessibility is just incredible compared to what it used to be. Braille, since it’s invention in 1829 by Louis Braille, was revolutionary, allowing blind people to read and write for the first time in history. However, producing braille has always been very expensive. I lost the ability to read print in the mid-eighties when I was about 15, and although I tried to learn braille, I was deterred by the dearth of books available in braille.
Enter the electronic braille display. It’s a nifty device that can be connected to your computer or smart phone by wire or wirelessly using Blu Tooth, and translates electronic text into braille—usually twenty or forty cells of refreshable braille that you can scroll through and read with your fingers as the little pins pop up and down in the correct configurations. Suddenly, now that pretty much every book published is available as an ebook (without the hyphen please, like email), I can read the latest release just as soon as my sighted companions. So yes, the much reviled ebook is accessible to blind readers. And unlike the adored audiobook, the ebook is also accessible to deafblind people, such as author Haben Girma, whose 2019 memoire describes how electronic braille helped her not only finish her Harvard law degree but also to communicate with fellow students in noisy social situations.
For many years, I relied on books on tape from non-profit and government organizations. There were so many reasons to be grateful for these audiobooks as they granted me access to school textbooks and for-fun novels. However, audiobooks take a lot of time and money to produce, even when they are relying on volunteer readers. The books on tape of my high-school, college and graduate-school years were not the slick productions that are so easily downloaded today. They were indifferently listenable and slow to arrive. They came by mail in unsexy plastic blue boxes, and oftentimes I had to wait months, years, or forever to get ahold of a book that my sighted friends were reading and talking about.
Before braille and audiobooks, there was the wonderful technology of spectacles—invented in Italy around the 13th century. Judging from the fact that all my newly middle-aged sighted friends suddenly need reading glasses, I’m guessing there were a lot of ancient and medieval scholars crying over their inaccessible books.
Thus, it is confusing to me why people—particularly older people are so mistrustful of technology. Technology has always allowed us to extend our working life beyond the years nature (and genetics) intended. Ebooks are a perfect example of how technology can be immensely helpful and yet widely despised.
I am on many bookish email lists (such as NY Times Books Briefing), which I read using my text-to-speech software on my computer or iPhone. The joy I feel at being able to gain immediate access to items on, say, “The 10 Best Books of 2019” is immeasurable. Before the ubiquity of ebooks, It simply was not possible for me to be so current with books without hiring a legion of personal readers.
I’m still working on my braille skills with my relatively new (and very expensive) display. But now that the books are available I can work on it daily. I recently finished Patti Smith’s 2019 dreamscaped memoir, Year of the Monkey, mostly using my braille display, but switched to my ears (using text-to-speech) when my newbie fingers got numb or when I was eating.
This leads me to an important point regarding the much-maligned ebook: a visually impaired reader can enlarge the print and read with their eyes; a blind reader who does not know braille can listen using text-to-speech software; and a braille reader can use their fingers with a braille display.
I am not saying that ebooks should displace physical books with their wonderful smell and heft. I dream of having a braille book library of my own someday! I also dream of owning my own house with a room big enough to house it. But until that wonderful day when I have lots of money and square footage, I am thankful to have access to electronic books. In fact, I would argue that the “cheerleaders” for ebooks a few years back who urged a complete switch from ink and paper to digital hurt my predicament as a reader who relies on digital, by assuming that all readers would love to hold their entire library in one hand.
This idea has understandably suffered a backlash. From this angry Guardian opinion piece railing against the techno-dazzled, to Bill Henderson’s refusal to publish his influential Pushcart Anthology digitally, to ebook-hating authors such as Jonathan Franzen, physical book fetishizers deny the validity and even the reality of digital books as if the printed letters were the thing and not the content and ideas the letters point to.
I am here to say that for me and millions of other print-blind readers, physical print books do not exist as anything more real than a doorstop, while digital books are real, readable books. If you don’t believe me, just pull an Oedipus–poke out your eyeballs–and tell me about the reality of your impressive print-and-ink library.
Book lovers come with all kinds of abilities and disabilities, all kinds of resources and lack thereof. We do not all have rooms for shelves and shelves of books or live next to a world-class library. Many of us have uncorrectable vision loss. Ebooks and digital libraries have opened up countless books for me, and they might very well keep them open for you, when you lose the ability to read with your eyes.
If you, for example, become print-blind alongside millions of Americans with age-related macular degeneration (a leading cause of visual impairment in those over 60), I hope you will remember my words: Ebooks are accessible books. Get over your technophobia and read.
This essay about the very different experiences my father and I had growing disabled first appeared at Catapult last June. I performed a storytelling version for a live taping of the Risk! Podcast, which aired in December in an episode called “Quality Time.” Scroll down for the performance followed by the essay.
I republish both versions here in honor of my father, Lee Goodin, who died a year ago tomorrow. It was, however, a year ago today that I received the call that told me he was dying. My stepmother had used his phone to call and so when I answered, I was prepared to receive birthday wishes, but instead received her no-nonsense, nurse-practitioner announcement that he was in the hospital and not coming out. So my birthday on August 18th and his deathday on August 19th are forever linked in a two-day bittersweet celebration of life.
You can read more about my dad in my personal obituary for him and get a taste of his writing in this post that includes three of his many letters to the editor published in the San Francisco Chronicle. But for now, please indulge my need to tell you about our respective disabilities and the joy of sharing delicious food and booze no matter the obstacles…
Now my dad is disabled. The military man, the world traveler, is in a wheelchair. A degenerative neurological disease has turned his feet into blocks, his hands into mittens. But we still can drink together, his blind daughter finding herself singularly helpful in these new circumstances. In his kitchen, where his wheelchair cannot fit, I slosh Beefeater into glasses, and, with directions called out from the dining room, I locate the pâté, the crackers, the Dijon mustard, the knife, and return to the table, not realizing that a strange moment of intimacy, such as we’d never shared before and will likely never again, is about to take place.
I barely knew my father from the time I was three, when my parents got separated and then divorced, until I was nineteen and surprised us both with a visit.
While I grew up in San Francisco with my mother, he was stationed in Thailand, Turkey, Italy and Germany. I saw him twice during those years. I believe the first time was when he and my mother signed their divorce papers, perhaps I was five, and we took a ferry ride in the rain to Sausalito. We went into a glassblower shop and that luminous fire magic took my breath away. He bought me a glass Cable Car and a bird. My mother drove him to the airport and I have a memory of waving to him until he disappeared. Immediately I crumpled to the floor, and I remember the feel of that Ford’s floor and the look of the child weeping as if I could be the protagonist and spectator both.
The next and last time I saw him as a child, I was nine. My grandmother died and he returned to San Francisco for the funeral with his new wife. Not long after that, I started losing eyesight. It was just the beginnings of the eye disease that would eventually make me blind. For decades after diagnosis, I was visually impaired, and it was as a visually impaired person that I met my father again, after several years of dwindling correspondence had resulted in us finally losing touch.
The night before we were to set out with our giant backpacks for a three month Euro-Trek, my best friend called to tell me that she had fallen off the wall at Ocean Beach. She’d been drinking a farewell bottle of cheap wine with her boyfriend when her hat blew off. Reaching for it, she’d slipped. “I hurt my knee,” she told me and said that it wouldn’t change a thing. It turned out she had torn a ligament, and that fact changed everything.
At that time in the early nineties, plane tickets to Frankfurt were among the cheapest, which is how we ended up flying into the city next to the town of Wiesbaden, where my father was stationed. Upon arriving in Frankfurt with my crippled best friend, in the early morning hours, with the lurid airport porn shops and bar that served us, the foreignness was overwhelming. They’d given me a wheelchair to push her and our packs around, but once we left the airport, how I’d get her anywhere came crashing down. I decided finding the bus to the Wiesbaden military hotel was the only viable option.
For the next two days, my best friend did nothing but lie in bed and moan. Once I tried to go out by myself but it was a disaster. My low vision made it impossible to carry out any plans, as I couldn’t read street signs or bus numbers or maps–this was long before GPS and iPhones helped to level the playing field for visually-impaired travelers. Although I’d had no intention of contacting my father, and probably wouldn’t have if my best friend hadn’t been out of commission, I’d agreed to take his number.
If large black letters were set on a small expanse of nothing–a 4X6 index card for example–I could still read using my peripheral vision. With a cigarette in one hand and trembling fingers, I dialed the number. I listened to the foreign ringing until the voice, somehow still unmistakable as my dad, picked up, and I said, “Hi Dad, It’s me.”
“Oh hello.” He may have even said, “Hi kiddo, what’s up?” Apparently unruffled.
I said, “I’m in your neighborhood and thought I’d give you a call.”
“I’m in Wiesbaden.”
He asked if I had plans for the evening. I looked over at my best friend prone on her little twin bed, and said that I was pretty open.
A year or two ago, after my dad was put in the wheelchair but before his chronic infections had progressed to where they are now, during one of our pleasant “liquid lunches,” I asked him if he’d had forewarning about my arrival from my aunt and uncle. It had suddenly occurred to me, after all these years, that his nonchalance could have been attributed to them mentioning my trip to Europe. He assured me that he had had no idea that I was coming, but that being career military primed him on being prepared to deal with unforeseen events.
On our first father daughter date, we went for dinner, which was a miracle of conviviality. We smoked and drank wine and talked as if no years had passed, no childhood lost. We held hands in the misty streets and he kissed me goodnight. Such is the strangeness of the human psyche, that the exhilarated bounding I did down the enormous, crystal-dripping hallway of the hotel built for international delegations–at that late hour empty but for me in my exuberance of finding a father–sits in my heart alongside one or two of the most romantic moments of my life.
After my dad and his wife retired, they moved back to the states, first to a tiny town in California’s Gold Country, where he became mayor, and then to his native San Francisco, where he still lives. As I turned from a visually impaired person into a blind person, my dad metamorphosed from an able-bodied person into a disabled person. The neuropathy progressed from the soles of his feet up to his knees, and from the tips of his fingers halfway up his arms, leaving him without sensation. When he stopped being able to feel the pedals of his Jeep, he had to give up driving. His wife continued to work as a nurse practitioner. She still works and goes to the theater and travels, while he has degenerated into helplessness.
They’d been accustomed to go on grand vacations for over thirty years–to more than a hundred countries and to all seven continents, and now she does these trips by herself. Putting my dad in what he calls “my kennel”–a small group home for elderly people in Pacifica.
It saddens me that for several years, my dad has spent his days sitting in his wheelchair, afraid to venture out alone, reading the newspaper and watching Netflix, all day while she’s at work. On more than one drunken occasion, he told me, “If I thought I could manage it, I’d shoot myself in the head.”
Nearly 1 in five Americans have a disability, and the vast majority are older people, according to the U.S. Census. When I was visually impaired, I never thought of myself as disabled–the very idea of it would have been insulting. As I’ve aged into my disability, both in terms of acuteness and familiarity, I’m proud of being a marginalized group on the rise. Proclamations of non-discrimination pertaining to diversity still do not often include disability, but that is slowly changing. Unfortunately my dad is of the wrong generation to benefit from this change. I hope to live to see it blossom.
Disability is the one variety of diversity that can strike anybody at any time, so why not prepare people to embrace it as difference rather than affliction? This shift in attitude will likely benefit you. At the very least, it may help you cope with your end of life disabilities, or those of your loved ones.
Having started on my road to disability at a young age, I feel strangely equipped to deal with what’s to come. In his 1911 essay “The Handicapped,” Randolph Bourne insists on the benefits of growing up and into oneself and one’s (dis)abilities:
When he [the handicapped man] has grown up, he will find that people of his own age and experience are willing to make those large allowances for what is out of the ordinary which were impossible to his younger friends, and that grown-up people touch each other on planes other than the purely superficial. … He will have built up his world, and have sifted out the things that are not going to concern him, and participation in which will only serve to vex and harass him. He may well come to count his deformity even as a blessing, for it has made impossible to him at last many things in the pursuit of which he would only fritter away his time and dissipate his interest. He must not think of “resigning himself to his fate”; above all he must insist on his own personality.
Even after more than a hundred years have passed since Bourne’s essay appeared anonymously in The Atlantic Monthly, it seems to me that we have yet some growing up to do. When will we finally recognize ourselves as precariously able-bodied, tending towards disabled, instead of constantly comparing ourselves to some mythical potent youth?
Last night my dad called to tell me that he’d made his decision. For almost a year he’d been facing the choice to either cut off the feet that keep getting terrible infections from wounds that do not heal because of his lack of feeling down there, or continue to get infections that will hasten his death. He reminded me that when we’d first had this discussion, I said to him, “The choice seems to be your feet or your life.”
It had struck me as obvious. But he’s resisted all these months, and yesterday brought finality. “I’m saving my feet and sacrificing me.”
Although the choice has been complicated by his weak heart that might not survive the amputation surgeries, it has always been more than loss of life that frightens him, I think. He prefers to die whole and intact. The idea of being footless would irrevocably launch him into the land of the disabled.
“No heroics,” his wife had told me last week, I think to prepare me. “He’ll go home and get what’s called palliative care.”
I was meant to understand that route was terminal. My dad confirmed it in a subsequent conversation.
“When do you go home?” I asked.
“Maybe a week, maybe a month,” he told me, “but don’t get your hopes up. It doesn’t look favorable. Don’t dwell on it.”
Between his nurse practitioner wife and his no-nonsense attitude all the conversations in the past weeks that touch upon his death, up to and including last night’s, have been singularly devoid of tears. It feels strange even to write about this finality with no surface emotion. I know that the loss of my dad will be painful, but I also know that he’s not been living the life he loves for a long time, and that the ground has been laid for all of us to let him go. Besides being world travelers, my dad and his wife had been avid skiers, avid theater goers, avid devotees of the good life, and I had, through many transcontinental cocktail conversations and on my bi-yearly visits, enjoyed that with him. I will miss our liquid lunches and our drunken conversations, but I know that he is already missing so much more.
I place the pâté, mustard, breadsticks, prosciutto, crackers, a knife, a plate, and lots of napkins on the table, my dad directing my movements. “There, yes, put it there. Open that prosciutto.”
He had once been a wonderful cook–the sort that took pleasure in serving up multi-course meals for ten or twelve intimates–and so this fumbling with food in front of him provokes more than a little self-consciousness. I do my best with the butter knife to slice the thick Trader Joe’s plastic, muttering a narration of my efforts, though he can see my progress perfectly well. I finally get a hole in it and rip the rest. “Now what?”
He informs me that the prosciutto must be wrapped around the breadsticks, like flesh over bone, and we get to work.
“Ah, shit” he says, and I hear a delicate snap. These are dainty breadsticks, no thicker than my pinky. Without feeling in his hands, all digital movements must be guided by sight alone with no tactile input. Hence, it’s awfully easy not to know one’s strength in the way of breadsticks and crackers.
I on the other hand complement this lack with my tactile-heavy relationship with the world. I ask if I can make him one, and he agrees.
I take a thin breadstick and a thin slice of prosciutto and dexterously roll it up. It is much easier than rolling joints or burritos. I hand it to my dad who smacks his lips. Then I make one for myself and I smack my lips. We continue for a few rounds.
I ask what the plan is for the pâté, and he instructs me to take a cracker, spread pâté on it and top it with Dijon. I do this and try to hand it to him. But, not being able to see, I cannot put it in his fingers, and not being able to feel, he cannot grab it without cracking it in two, so after a few frustrating attempts, and much pâté lost in the effort, we hit upon the expediency of me holding the cracker in the direction of his face, whereupon he grasps my wrist and shoves the cracker (and sometimes my fingers) into his mouth.
We do this over and over and the gin helps us forget the unsanitary way in which I grip the knife and thrust it first into the pâté and then into the mustard and sort of push lopsided toppings back onto the crackers with my fingers, which, nine times out of ten end up in contact with my dad’s mouth. And each time he grunts his approval in a closed-mouth yum-yum kind of way, I know I will never forget the way he let me help him –at least for a few minutes–enjoy one of his last tastes of the good life.
*Recently Artsy reached out and reminded me of this article (written last August) and the importance of art accessibility. Also, I should note that things are continually improving, as exemplified by my friend Claire Kearney-Volpe who offered a Co-Lab through the NYU Accessibility Project, to help Cooper Hewitt bring art accessibility to their design museum*
“You can’t touch the artifact!” said a female voice in an urgent museum whisper. In fact we’d been directed to the pieces in The Met’s Egyptian collection that are touchable by blind patrons by another museum guard, who clearly had great love of his job generally, and this aspect of it in particular. He shushed his alarmed colleague and explained to her about art accessibility. You’d think all the guards working the Egyptian wing would be informed of this unique aspect, or at least that they would have looked at the exhibits they were guarding over and learned what the signs clearly state, but people don’t read.
My boyfriend Alabaster told me that several people stood staring aghast during the course of our tour, and that one woman nearly screamed when she saw me with my hands on a sarcophagus until her husband pointed out the braille title card and the printed sign explaining that the object may be touched by BLIND PATRONS ONLY to enhance their museum experience.
You may be jealous and confused, but don’t be! Out of the approximately 26,000 artifacts in the Egyptian collection, only a handful may be touched. The rest must be explained verbally, which is just not the same thing.
I have been on several “sense” tours at NYC museums over the years and, while I appreciate the impulse, it often feels like they are phoning them in in order to check the accessibility box. Take for example a sense tour at The Met wherein our tour guide described almost every object as “very colorful.” Or the time at MOMA, when, at the top of a tour of Soundings, an exhibit of contemporary sound art–perfect for blind people right?–we found ourselves sitting on portable stools in front of a silent piece–the only silent piece of the exhibit–with a tour guide who, in an effort to encourage us to commune with the art, sat on the floor with her back to us and began to meditate.
I haven’t a very long fuse for the unbearable and soon I was fuming, not the least because I could hear the happy buzzing and whirring and chattering of a dozen or so other pieces–and as you may have noticed I like soundscapes a lot! Still, I felt somehow guilty for not appreciating the effort, so instead of having a tantrum, I handed my headset to the tour coordinator, claiming a terrible back spasm, and Alabaster and I got out of there to enjoy the museum in our own way.
He described in great detail some of his favorites–Paul Klee and Piet Mondrian –and I was able to ask questions when I didn’t understand. Even though I used to see and can readily access visual memories, I find it difficult to assemble descriptions into an art object visible to my mind’s eye. But, with great effort, enthusiasm and empathy on the side of the describer, and intense and artistic concentration on the side of the listener, it can happen that a heretofore-unseen object can manifest in the mind’s eye and occupy mental space as vividly as any object once-seen. As with all translations, this one is not perfect but it is wonderful.
Friends of ours with a similar dynamic–Caroline (visually impaired) and David (sighted)–went to Paris and were delighted to find that all museums were free for blind people. It made so much sense that this should be the case, since, really to get anything out of the museum experience, only a few objects can be described and integrated at a given visit. There are no cursory glances for blind people. All must be savored and chewed slowly if it’s to make any impact, and so what might take a sighted museum-goer a single trip to see, could take several for a blind person and her trusty describer.
Back in the states, it never hurts to ask about art accessibility. At the Whitney, we were pleasantly surprised when, upon asking if there’s a discount for blind patrons, we received the good news that it would be free for me–whether this was policy or not was unclear, but it was nonetheless welcome and, in addition to having a fine time talking through the art, with many articulate gestures on the one hand and far-flung questions and analogies on the other, we apparently attracted attention. More than once, Alabaster caught strangers filming or photographing us.
Which brings us back to our Met tour on Saturday in which I was able to touch Ancient Egypt. It was really cool to feel the mane of the lion goddess, and squeeze the nose of a king’s sarcophagus, but my favorite part of the tour, and the reason it far surpassed the tour the Met organized a couple years back of the very same objects, was spending time reading the hieroglyphs with the help of our personal Egyptologist (and voiceover artist extraordinaire), Lloyd Floyd.
Before we learned which artifacts I could touch, we started the tour at a colossus where Lloyd Floyd described the pharaoh’s many titles, spelled out in hieroglyphs, and I found it difficult to concentrate, but later, with my hands on the hieroglyphs, the meanings that he explained corresponded to a sense impression–just as you, my dear sighted reader, may take information in through your sense of sight while listening to information regarding that description.
I realized how incredibly enlightening it was to hear what the signs meant when I was not splitting my brains trying to keep the image just described in my head at the same time as incorporating information about the object described. In other words, incorporating two abstract concepts into my poor pickled brain at the same time is exponentially harder than incorporating one abstract and one concrete–or in this case granite!
That’s not to say that, as mentioned above, it is not wonderful to receive a description of an art object, but it takes a long time, and when the description of what is seen comes at you alongside esoteric context, the brain easily boggles! However, with my hand on the hieroglyph my ear became very attentive. Besides, feeling the shapes and being able to participate in the discussion of whether the thing under my fingers, and their gaze, represented, as the archaeologists claim, a horned viper or, as our senses suggested, a slug, was a precious moment, not to be underestimated.
Not all museum pieces are made of virtually indestructible granite, but there are other ways of creating environments of art accessibility. Through models and replicas and many other ingenious tactile analogies as described in an article at Art Beyond Sight. Mentioned in that article is a brief warning to be careful not to make the experiences segregated:
“Some museums offer visitors in-depth tactile investigation of selected works, frequently in an alternate space. It is crucial that this not become a “segregated” program, but rather a supplementary educational approach to gallery programming.”
I agree with this, and believe the experience of others to my even being in a museum makes the whole experience educational in a multi-faceted and fun way–nothing like freaking out sighted people on a Saturday afternoon at The Met!
Yesterday I sent off a story–a rather sick and twisted tale that has disturbed the dreams of more than one workshop companion–to a reputable UK horror magazine using Submittable. If you’re not a writer, Submittable may be new to you, but if you are a writer, you can hardly avoid it these days. Submittable is the online hub of submitting work for journals, magazines, even fellowships. I’ve used it many times and have always been so happy and grateful that it exists.
Submitting electronically makes it possible for writers who are blind to participate in the vital, if often painful, act of submitting work without sighted help.
So, while submitting to Black Static yesterday, I was aghast to find that, according to my screen reader, there was no button to choose a file or browse for one. In other words, I suddenly could not attach my story. And for those non-screen reader users, buttons are usually pretty accessible. I cursed and then asked Alabaster to mouse click the damn thing for me, and took it from there–the “submit” button was still accessible.
Then, as is becoming my habit, I wrote a note to the tech support at Submittable telling them about the problem and offering to help test any changes, a typical example of how I reach out in the face of such difficulties:
I am a blind writer and have used Submittable many times for submitting in the past (and also as a member of the editorial review board for Newtown Literary), and today is the first time I’ve not been able to attach a file. My sighted partner had to click the “choose file” button, which did not appear to my screen reader Jaws in Firefox, though the “submit” button showed up fine. Usually such buttons are no problem at all…
Please let me know if I can be of any further service, and feel free to have your developers reach out with any questions, or if they would like me to test anything out for them.
Happily, Submittable is awesome and I received an email within a couple hours:
Thank you for letting us know. We’ll get this fixed asap. I’ve also let our development team know about your kind offer to help them test the system. I’ll be back in touch when I get word of a fix.
Thanks again! Best,
Although I always offer to help developers test their systems, I’ve only received a taker once before, and that from the premiere screen writing software Final Draft, with whom I’m working as a beta tester, which is super. It’s just kind of sad that most of the time developers do not take me up on my offer. Why not? Hubris? That’s my guess until some one of them explains it otherwise….
I try really hard not to get frustrated by these encounters with lack of accessibility in the writing community, but it’s hard.
I recently filled out an extensive application for the PEN Center Emerging Voices Fellowship, where several of the menus–age, gender, race, etc.–were not accessible, another frustrating case, as combo boxes and drop-down menus are usually very accessible. So I let Submittable tech support know, and asked Alabaster to take care of these, as the deadline was strict, and there was no time to wait around for a fix.
I also had him choose “Other” in the race box, so that I could type in, “I feel it is important to state that although I am white, I experience many challenges because of my blindness.” Disability is rarely included in statements of diversity, though I think that is changing.
Because the Emerging voices Fellowship is meant to help out traditionally unheard voices, I was able to press the issue further, into the short answers. For example, to the question “Explain why you think you are locked out of the literary establishment,” I wrote:
I have a degenerative eye disease, which means that I’ve occupied pretty much every notch on the sight blindness continuum, but oddly, as my sight has decreased, the technology that gives me access to new books, journals, electronic submissions–in short all the things that are vital to a budding writing career–has flourished. Still, there’s a long way to go. even in this application, there are a few dropdown menus that are not accessible and for which I will need help before submitting. I run into such difficulties often, and I try to let web developers know, but if I picked every accessibility fight, I would hardly have time to write. Thus, in a very practical way, I have been, and often still am, locked out of the literary establishment.
Up until very recently, it was virtually impossible for me to gain access in a timely fashion to contemporary literature. This is part of the reason that I stuck close to the Early Modern Period in graduate school. Through my twenties and thirties, almost nothing was available to me, and now I am surprised when I cannot get ahold of a new book. This is wonderful, but I feel I have a lot of catching up to do with regards contemporary literature.
Even now, there is snobbery in the literary community regarding eBooks, which are accessible books. Happily, more and more prestigious journals–“Tin House,” “Ploughshares,” “Granta“–are available as Kindle books, but others, such as “Glimmer Train,” are not. The point was driven home in a “Publishers Weekly” article, “Bill Henderson Marks 40 Years of the Pushcart Prize.” In it, the founding editor explains why there will not be a digital version of the acclaimed anthology. “’In the future, anyone can read it without using a battery”,'” which indicates a naïve understanding of readers and a complete disregard for accessibility. This illustrates how, even though the technology exists, there is an ideology that keeps myself and other print disabled people locked out of the literary establishment.
In a Catapult workshop I am currently in, we read “Cremains” by Sam Lipsyte, and though I enjoyed the story, my appreciation of the writing was tempered by the portrayal of Hilda, the blind character, who is fantastically stereotyped and badly drawn–I don’t know any blind people who can’t do their own dishes for example. Of course, as writers we will all be mistaken in our portrayals of the other, but until some corrective is offered in the form of blind people taking some control of their literary image, mythology, and metaphorics, not to mention the mundane bits of life that the sighted cannot know experientially, the stories will remain terribly lopsided both in terms of number and authenticity.
In my last essay inspired by attending the NYC Disability Pride Parade, I presented a small rant on the dearth of actors with disabilities representing themselves on television. And I got to thinking about how, in a troubling landscape, I can say with as few sour grapes as possible, that the blind actor is pretty much non-existent, excepting of course in a certain Vanda commercial starring me!
Blindness is a very weird disability since, without the accoutrements of white cane or guide dog, it doesn’t look like much, which is why, I suppose, I receive comments on the Vanda iSpot page doubting my authenticity. Here’s an example from George:
“Doesn’t look blind to me. Her eyes are following the action. She at least has some vision.”
And another from Rhonda:
“This is an actor!!! They need real blind people. They stopped this one with the actor woman. Now they have an Afganastan [sic] vet.”
For some reason, Ronda believes in the vet, but not me, the assumption is that the vet is a real blind person, which in fact he is. Mike and I shot our commercials at the same time and chatted during lunch once. But why getting blinded in war is more credible than having an eye disease remains a mystery.
“Same she doesn’t look hummm noract like any actual blind person I know and I have friends and family blind from infancy to loss of sight from wound in war to elderly! And lost sight even to being diabedic [sic]. She doesn’t appear to act in any way as they do”
Spelling mistakes and typos aside, I accept these comments as representative of a certain percentage of the American sighted population. Happily for Molly (and human kind), there are others who believe. Someone took the time to Google her and discovered her authenticity. From Shelley:
“I googled it and I think her name is Molly Burke and she has retinitis pigmentosis [pigmentosa]. You gradually lose your eye sight when you have that. My grandma had it along with two of her sisters. She was declared blind in 1967 but didn’t completely lose all her sight until 10 or so years later.”
Indeed Molly Burke is authentic and has a popular YouTube channel in which she talks about life with blindness.
I wonder if others in the disabled world get victimized by such able-bodied scrutiny. Probably. And yet there are disabilities that are hard to fake. No one doubts that Peter Dinklage, who plays Tyrion Lannister in Game of Thrones, is the real deal.
Part of the problem is that able-bodied actors have been portraying and often winning Academy Awards for their performances of disabilities for so long that seeing someone who is actually disabled defying stereotypes–not looking blind, for example–that when they see the real thing, they doubt the authenticity and somehow feel duped. It’s odd that people cannot imagine a real blind actor, but only real blind people, as if actors were not also people.
Kitty McGeever starred in the long-running “Emmerdale,” but sadly died age 48 as a result of many health issues. McGeever was the first blind actor to star in a British soap. Having trained at RADA, she lost her sight at the age of 33, shortly before winning her role on “Emmerdale.” She described her character as “naughty” and “manipulative in the extreme” to the BBC, and added, Lizzy “uses her disability to her advantage and then disregards it to her advantage whenever and whichever way she chooses.
When I was called to audition for the part of Reba on NBC’s Hannibal, I dreamed of not just the stardom and money, but the idea of doing talk shows and the like, speaking as myself to a mass audience of sighted people about my particular flavor of blindness. How delicious, I thought, and important, to offer a perspective that might not square with the usual perceptions! I also imagined insisting on the importance of having people represent themselves on TV, providing more nuanced and authentic representations, representations that have behind them, at least to some extent, experience that reaches beyond stereotypes. This is important not only regards viewers but also the immense cast and crews on a television or film set.
The director of the Vanda ads, Malcolm Venville, told me on our first day of shooting that how I moved was so interesting. That it was so different from how a sighted person moved, and yet subtle and not what you see in the media–not superhuman and not slapstick. The cast and crew’s experience of a blind actor can only help to explode stigmatic portrayals. There is hardly a mainstream blind actor working today, and yet the portrayal of blindness is practically a staple on the TV series, where main characters are struck blind at alarming rates, usually just before jumping the shark–yes, I’ve got Fonzie’s Blindness in mind.
But things they are a changing, and I’m excited for the blind kids coming up. Soon, I hope, it will be as frowned upon to have a blind character played by a sighted as to run around in blackface. But for now, we must be satisfied with pharmaceutical ads and training videos… Below you can watch my friend George Ashiotis and I tell poll workers how to treat people who are blind!
Last year I wrote about why Disability Pride Parades Matter, from a bookish perspective since I unfortunately did not make it to the parade. This year, I did make it and was very pleased to run into friends including my old pals from Lighthouse Guild Music School! They may never forgive me for flubbing my chance to distinguish the Lighthouse from amongst the hundreds of other disabilities organizations in my impromptu loudspeaker announcement, but perhaps this video mitigates somewhat. Anyway, please excuse my excitable camera guy, who got a little nervous when I took the mic–he’s a much better singer composer!)
As an actor and writer for New York Film Academy, I’m acutely aware of the challenges actors with disabilities face. So it was exciting for me and many others to have Micah Fowler of the current hit TV show “Speechless” grand marshal this year’s Disability Pride Parade.
Born with cerebral palsy, Fowler started acting when he was five. In a Vulture interview Fowler said, “I think it is sad that less than 2 percent of actors on screen are themselves actually disabled. Growing up a huge television and movie fan, I couldn’t help but notice the lack of representation of both disabled actors and disabled characters being portrayed on television. So I am so very excited that “Speechless,” a prime-time network-television show, conquers both of those missing links by having both an actor actually living with cerebral palsy as a main character and by having a “character” in the story line living with a disability.”
Although Fowler and other young actors with disabilities such as Lauren Potter who played Becky Jackson on Fox’s hit show “Glee” and Jamie Brewer who played several recurring roles on “American Horror Story,” including Nan in “Coven,” who both have Down Syndrome, offer viewers the glimmer of a new trend of hiring actors with disabilities, things are still pretty dismal.
According to a Variety article informed by a 2016 study released by Ruderman White Paper, “95% of characters with disabilities in top 10 TV shows are played by able-bodied actors,”
The study was commissioned by the Ruderman Family Foundation and took a comprehensive look at employment of actors with disabilities in television, and reveals that “people with disabilities are the most unrepresented minority in Hollywood.”
In all of this, there is a need for activism and a push for hiring practices to shift, but there are also things disabled people can do for themselves by themselves. A good example is marching in disability pride parades, because they bring bunches of disabilities into the public eye.
I could have wished that there were a few more people along the parade route yesterday, but there were a whole lot of people marching, and it felt good, though, I believe it was a little lacking in spectacle–a few too many matching t-shirts, if you ask me. I think we need to rip a page off the gay pride parade handbook. We need costumes and we need floats! I have big plans for a braille dress next year! But of course, Gay Pride has got a few decades on us.
Daryl Mitchell, who stars in NCIS New Orleans, was an established actor before a 2001 motorcycle accident left him paralyzed from the waist down. With support from friends, including Denzel Washington and Chris Tucker, he has continued his career and now stars in “NCIS: New Orleans.” He is an advocate for employing actors with disabilities. In an Ability Magazine interview Mitchell says, “You meet with these Labor Department guys, and you can tell everybody is enthused and ready to go. That’s the main thing, really. Their willingness to fly out from Washington and see us in Los Angeles and speak with us says a lot about them. But it’s really a matter of what we need to do, what we’re willing to do as people with disabilities. We need to be more boisterous. We need to let the world know that we’re here.”
So here’s to boisterous disabled people, costumed and bejeweled, marching in the Disability Pride Parade 2018!