This will be published in an upcoming issue of the DVIQ.

“Erika Johnson and Blake Sinnett’s daughter, Mikaela Sinnett, was returned to them after 57 days in foster care,” begins an article on Parent Dish, which describes the horrifying tragedy in detail. And the Kansas City Star comments further on this travesty that, “Now breast-feeding is a lost option.”
Many of us hear stories about how blind people are barred from access to events or opportunities, but how can one even begin to talk about parents being barred from access to their own child; about blind people being excluded from parental love?
This author can empathize—but then again, can’t even imagine—what nearly two months without one’s own baby must feel like. It is unimaginable to picture the mother, who has known her baby for months, not having the opportunity to get to know her at all. Or to think of the father, who tries and tries to keep his partner hopeful as she grieves, perhaps needing to mask his own grief at times. In fact, both of them might have felt the need to hide their grief somewhat behind courage, and later behind gratitude. Johnson even said she felt forgiveness. But then again, can we really fathom the horror of working and planning and saving for a baby, only to have her gone, knowing she is alive somewhere, but remaining unable to participate in her life.
The ramifications of such a story are also frightening in the world of new blind parents. After reading such a story, the thought of having the baby unassisted seems infinitely easier, when prevailing thoughts are that the assistance could turn out to swoop in, raptor-like, to remove the baby. Hospitals all over the country offer services for new parents, services which parents who are blind would feel cautious to take advantage of with stories such as these permeating their consciousness. As Erika Johnson explained, “I needed help as a new parent, not as a blind parent.” The thought of parenting becomes less terrifying than the thought of making a mistake in front of someone, a luxury which new sighted parents can’t fully appreciate. Since parenting, whether the parents are sighted or blind, is a human and not a mechanized endeavor, mistakes can and do happen. As a wise friend told me, “Kids don’t come with instruction manuals, and even if they did, they wouldn’t have read them.”
Perhaps some sighted workers in positions of power in hospitals and in the community can’t imagine feeding, diapering and caring for a baby without seeing. Or perhaps they don’t even try to imagine it and simply deem it impossible. After all, the social worker asked Erika Johnson questions about caring for her newborn, but she was not really listening to her answers. If she had been listening, and not just staring, maybe she would have realized that Johnson and Sinnett both had forethought, a necessary qualification for all parents.
This is the sort of story about parenting which makes the news, because the media is often about page-turners. It’s much more difficult to find a story entitled: “Blind Couple Brings Child Home from Hospital and Everything Is Fine.” But that’s the sort of story the general public, especially hospital personnel, needs to read.

I’ve been following my friend, Stacia’s, life closely, because she is going through the adaptations of early motherhood, which interest me, and because I think her writing is beautiful and full of insight. One of her literary foremothers, Lucille Clifton, recently died, and I felt sad that I couldn’t claim her as a foremother in the same way. It got me thinking about my own literary foremother, Jean Little, who is, as far as I know, still alive. I always worry she’ll die before I ever get to meet her, and unlike some of my worries, I think this one has some basis in reality.
I encountered Jean Little in my bedroom in South Jersey on August 12, 1993. I was a week away from turning twelve and was full of pre-adolescent angst about life. I was about to go into sixth grade with the same kids who had made me miserable in fifth grade the year before and couldn’t understand why my parents had not decided to move as they had promised (actually, discussed—but promised!), so I could attend a new school; or, better yet, why they hadn’t yanked me out of school altogether. “Ignore them,” my mom told me when I told her about the kids and went off to work.
My mother is not a callus human being. She would not have enjoyed knowing her daughter disliked everything about school except for the work. It must have associated on some level with her own childhood and early adulthood of wanting, stubbornly, something more from her life than being a teacher or a nurse or a housewife. But really, what could she do? Yell at someone? Send hate mail? Tell the teacher to have a talk with the kids about tolerance? We all know how well those sorts of talks work. Mom is extremely patient, and although she is not unemotional, she cringes from melodrama. I’m a little amazed that I, the worryer, the cryer, the impatient one, was born to her. My mom has never been bursting with advice or therapy every time I talk, though she does have her moments. “Birth control is cheaper than abortion,” she told me later in young adulthood, “and abortion is cheaper than a kid.” It was the shortest, least preachy birth control lecture I ever got, and it stuck. But in general, my mother is a listener, not a talker. So she did more than just tell me to ignore them—she listened to me day after day—whether I felt like talking or not. But I didn’t really get that as a kid. All I knew was that the teasing went on and on and on, and she couldn’t fix it, and I could not ignore them.
So I sprawled, sweating, across my bed, wondering why I had had the nerve to be born so prematurely and in summer, of all seasons, when I couldn’t show off my birthday to anyone, feeling incredibly isolated. I picked up a book which the librarian had randomly sent to me: Little by Little: A Writer’s Education by Jean Little. It was a tape actually; the narrator was Kerri Cundiff, who was already one of my favorite narrators. Upon reading the book jacket, I was dismayed to discover that this book was an autobiography and, even after the author’s introduction about her loyalty to fiction, I waited for the inevitable, “I was born in …” Instead, “’You can’t climb up here,’ Marilyn Dickson said, ‘You’re not allowed.’” I knew all about “friends” who decided what I could and could not do, justifying their sudden ascent to authority with safety concerns. I was hooked. I’m still hooked by that incident, and I pay a brief tribute to it in the opening of my novel manuscript. I read into the evening, into the night even, and my parents didn’t stop me. I woke up the next morning and kept on reading until I had finished the book. Then I read the book again. And again … I don’t remember when I moved on to whatever book I read next.
For those of you who don’t know, I’ll indulge in a little bit of fact-throwing, the sort of behavior which Jean Little would not condone in full-scale autobiographies. But many Americans–at least most of my friends–don’t know about her. She was born in 1932 in Taipei, Taiwan to
doctor/missionary parents and lived there until she was seven. She spent the rest of her life in Toronto and Guelph, Ontario, Canada. She was congenitally visually impaired and became totally blind during her adulthood. She published her first children’s book, Mine for Keeps, at the age of twenty-nine and went on to have a long and successful career as an author.
The biggest revelation of the autobiography for me was Jean Little’s acknowledgment of teasing. She couldn’t ignore it, and she didn’t shrink from telling about it. She did get through it somehow just by getting older. Little did I know as a twelve-year-old that I was only one year away from the end of the teasing. By the time I got to seventh grade, the school was so much bigger, so much easier to hide in, that kids who didn’t like me simply pretended I was not there. But reading through those incidents left me with my throat clenched, when I was not actually crying, and, though I had read sad and troubling books before, none had ever taken me to that raw, wounded place and healed me in quite that way. I had a similar reaction later in the book when Little mourned the death of her father when she was just twenty-one. It hearkened back to my maternal grandmother’s death almost three months before, and I credit it with preparing me obscurely for my father’s death at a young age.
The second biggest revelation of the book was her story of being blind but becoming a teacher and an author, two vocations for which I am still striving.
I’m introduced to very few authors by their autobiographies, because I tend to be hooked by their fiction first. But knowing that this book “really happened” and was not imagined was incredibly powerful for me as a kid. I went on to read many of Jean Little’s fictional books, though I still have not read all of them, and although I loved them, her autobiography was, for me, the most authentic, and I’m deeply sad that it has gone out of print.
As writers, as people, Jean Little and I do have our differences. Her ethos is very Christian and has never really wavered. I read other books which gradually undid my semi-Catholic upbringing. And I’ve read enough of Jean Little’s work now to recognize certain phrases, certain types of instances, certain storytelling mannerisms which I probably won’t adopt, though they work for her books. But my writing owes enormous debt to hers; in some ways, my fiction can’t ever leave childhood, that incredibly formative, vulnerable time of life when everything becomes a learning experience. Trying to capture the one adult love affair in my novel has been the absolutely hardest part for me as a writer, and I’m sure it’s because my childhood yielded far more vivid impressions.
When I was in my early twenties, I discovered Jean Little had written an autobiographical sequel: Stars Come Out Within. It persuaded me to get a Seeing Eye Dog and moved me deeply in its own way, again probably through its sheer authenticity. But a moment in the foreword troubled me: the author’s acknowledgment that she would “stay clear of that attic.” There were memories she would not or could not share. If I were to venture a guess, those memories would have had something to do with sexuality, love or lack of it, or some sort of family obligation. As far as I or any mere reader knows, Jean Little has completely supported herself with her writing but, much like Emily Dickinson, has always lived with members of her birth family. She never married, possibly never fell in love, though that last possibility is unconfirmed. As a person with a disability, I find the complete omission of love (ok and sex) disturbing as a representation of the blind woman who, “of course,” would not marry; yet I also know she is not a representative of anyone but herself and never tried to be, that she doesn’t have to justify this choice to anyone, not even to herself, any more than a woman without a disability. I’ve often daydreamed of meeting her: randomly seeing her at Seeing Eye or randomly passing through Ontario and setting up an appointment to chat the way she and Rosemary Sutcliff did so many years ago. I have written a fan letter and have not heard back from her, and really there is not a reason she should write back. She was the writer and has no obligation to be the responder for every person she’s impacted. She has the right to her attic.

I returned to

My story,

This article will be published in the DVIQ newsletter, a publication for the Council of Exceptional Children, in January.

I’m not the first human being who is blind to rail against the frustrations of sight language. As a verbal thinker, I’m continually astounded at the ways in which vision pervades language-based thinking, because sight words both potentially alienate sighted people from blindness and dominate language to the extent that describing my non-visual world can sometimes prove to be challenging.
There are instances of language during which I can’t help feeling as if the words people use promote sight over blindness. Clichés such as “blind optimism” and “blind faith,” which connote ignorance rather than lack of sight, pop up everywhere in my daily reading. When I come across educated people who don’t know how to interact with me as a person who is blind, I can’t help wondering whether these words affect them subliminally. There are also organizations whose work I truly admire, but their names use sight words. For instance, Ski for Light, which I’ve attended and loved because it provided me valuable exposure to cross-country skiing, implies through its name that its mission will help me gain light, or will equate me somehow with being sighted. Taken literally, I will not gain light perception through skiing, but more importantly light does not equal understanding or knowledge or freedom for me. In other words, why is darkness bad? Another organization about which I know considerably less but whose cause—curing preventable blindness—I also support, is named Foundation Fighting Blindness. I found out about their name as a high school student and felt as though my identity as a blind person was somehow being threatened. I joked to my little brother, who is sighted, that I should retaliate by starting a group called Foundation Fighting Sight. He was not amused.
As an aspiring writer, I sometimes wonder whether sight language exacerbates my own limitations as a writer and the ability of speakers of the English language to think about non-visual senses. While I can only hear or listen, feel or touch, smell or sniff or taste, sighted people can see, look, stare, gaze, watch, view, glance, peek, etc. I don’t begrudge the eyes their complexity and power, but when I struggle to describe my own non-visual experiences, I begin to wonder whether our language, along with my own language ability, need further development. On October 15, we gave in and turned on the heat. Radiators heat our apartment, and the first time we turn them on after a long dormant period, they always give off a certain smell of not having been used in months. The smell is not new to me, but this year I wondered how I would describe it. My first thought was that it smelled like gas, but smelling like gas can mean anything from farting to something truly harmful. How could I use words to capture the clear difference I discerned between the smell of the radiators and the smell of car exhaust? And even if I could eventually come up with something, why was this such a struggle?
There are two ways to handle this dilemma: to give up and accept that our language will always be visually dominated or to try, even if it takes me longer than it should, to illuminate the very real, non-visual aspects of experience: the complexities of dialogue, the sounds of crowds and silence, the smell of a radiator stirring from hibernation, which I’ve decided, at least for the moment, is a chalky smell. Describing it as chalky makes me smell dust flying from the erasers, hear its scrape across a blackboard, even taste the dust. (Do kids even experience this anymore)? And isn’t one hallmark of good description that it can awaken all of the senses, not just one? When I skied for the first time, I felt the ache of muscles I didn’t even know I had, heard skis and snowshoes taking bites from the snow, smelled wool and wood smoke, tasted a sharp, clean taste of a piece of the world which is still relatively unpolluted. I did not see light.

My colleague came into work today and told us a story about a neighbor who came up on her porch to trick-or-treat. She said he had just graduated from high school. He told her he was dressed up as “a retarded person” and was immitating his perception of people with mental retardation.
“Your parents must be so proud of you,” she told him. “Now get off my porch.”
I’m happy to work in an organization and particularly in a department that has such high awareness of these things. If she had been in my harassment training group, maybe it would have been easier. But more importantly, we need citizens like her everywhere to stand up for those who don’t wear disability as a costume.