Little Boy on the Train–Written Before Tad and Harping

I met this cute little two-year-old boy on the train. He came over,
fascinated by Tad and was pointing out his different body parts, so I was
pointing them out with him. Sometimes he would say, “What’s that?” and I wouldn’t know what he was pointing at, so I would
talk to him about something else. But he didn’t seem to mind. I am
worried about when that question will come from you, because I will actually want to tell you whatever it is you’re fascinated by, to give you the thing’s name. We will have to learn to communicate verbally and tactually. Anyway, the kid was standing so I told him to sit on the seat (I was on a tripple) so he
wouldn’t fall. He climbed over the arm of the
seat instead of approaching the seat like an adult would. Then he got
a little bored With Tad and started jumping on the seat. I kept hold around him so he wouldn’t fall, and then his dad came and got him, but I was sort of fascinated by how well he balanced jumping on a moving
train seat. His agility was so youthful! I’m sure even when I was little I did not have his
balance. Tad remained calm. Actually he was
calmer on the train having a little kid to look at. I think he
sniffed the kid and probably licked him but let him touch him and pull
on his ears and everything. I also think the kid was relatively
gentle with Tad anyway. I knew Tad was fine with little people, but
it was still nice to witness that before you arrive.
The little boy was very trusting of me, maybe because I had a dog, maybe because I was pregnant. I have no idea. I know someday you will come into the world thinking everyone wants the best for you. I hope you always encounter such people.
I am listening to harp music, and I’m longing for a harp. I have not played the music on a speaker for you in utero yet, but I plan for your first song to be Grainne Hambly’s arrangement of “The Jointure and Jig.”

Tad Witucki

The only one from your generation who currently shares your in-utero surname is a black Labrador with floppy ears who, unlike his entire breed, hates the water. He was born on March 7, 2004, and he came into my life on June 26, 2006. He has now spent more than half of his life with me.
My urge to portray him for you surprises me, because I can’t sit down and portray a human to you this way. Even Carolina, who died during the earlier stages of your forming, whom I regret you will never meet, I can’t portray to you somehow, though not for lack of wanting. The only way I can remember her to you, over a month after her death, is through Tad, a creature Carolina was sure had the love of Jesus in him. I’ve tried to separate out the relevant aspect of love from the less relevant—for me—aspect of Jesus, to pull love away from the character in order to understand what she was getting at. She would insist to me, as she came to Tad with a treat, that she was waiting to give it to him until he showed her love, so she knew he was not just there for food. No other treat giver has insisted on his giving something so impossibly intangible, and I’ve laughed at her saying, “Ok, he loves you, but he knows what you have and still wants it.” After she died, I sat upstairs in Tom’s house, a place which is more comfortable than but which is about as familiar as a hotel to me compared to the house in which I grew up, making the requisite phone calls to coworkers in my department, while Independence Day barbecuing was happening downstairs, and Tad sat in the doorway, perhaps longing to make a permanent exit toward the food but attending to my vigil. Once in a while, he would trot off, but he would return shortly after to sit there again, checking in. I wasn’t crying, but he knew.
Just as he knew that he needed to sniff around the tumor which was growing on Susan’s dog’s jaw the week before she died.
Or that when I was crying, in the aftermath of a difficult hospital visit, he should flop on his back in front of me in complete, goofy Tadness.
In our earliest days of getting to know each other, I cried in front of Tad, too, and that time, he walked around in circles crying along, then flopped into my lap. He has done this lap-flopping less over the years, which fills me with combined regret and relief, because I can’t hold 65 pounds of dog for very long. But his expressions of affection have not diminished; I have known two other dogs over my lifetime, but I never had such an expressive dog—or at least I never paid attention to their expressions before. Tad is usually a clown, even when he is completely earnest in his clowning.
His job is to be singularly attentive to me, unlike Jesus’s, of course, and he can but doesn’t always show that singular attention. As I was getting at to Carolina, he is not divine, or at least not only divine. He is a mere mortal with mortal yearnings. His passion for food cannot be rivaled, not even by his passion for attention. He has no enemies, except, perhaps, for dogs which surprise him on our walks. All humans are friends, and all friends are long lost kindred spirits. He does seem to have a different, deeper, more excited affection for those he knows, and he knows everyone. He’s the quiet extrovert, the kid who plays with everyone on the playground, who gets universally excited about everyone and shows it in small individual ways which are as varied as the individuals he meets. For me, he actually shows a calmer emotion than with other friends. If I reappear after being absent, he moves around wagging, but he never jumps on me or even near me. It’s almost as though he thinks, “Oh there she is,” instead of, “Look who’s here!” Reassurance instead of excitement? I’ll take it. When I returned from my first absence of a few days, he slept on my foot for hours.
In October, Tad had a gigantic scare. He has had little scares, of course, but this one was different. He was riding in a van with us when a part fell out from underneath it. It didn’t hurt anyone, but he began generalizing this panic to other vehicles. For months, I thought it would get better; then I gave in and called the Seeing Eye. They sent out an instructor who helped him recover at least 50% of his calm, if not more. Food bribery is particularly helpful in this situation as well. But the thought of his retiring to live with one of my friends, probably either Betty or Damien, fills me with dread. I’ve started and then postponed an argument with your father, which I hope you won’t hear someday in a few years, as I’ve told him that we can keep the old guide dog, the new guide dog and the kid or kids! No problem!
I’m excited that with the little boy on the train, Tad was so calm. I wonder what will happen when he meets you, and I hope someone in the room will have a camera on hand to visually document that meeting. Your Uncle Chet will drive up here to take him off my hands while I’m in labor, so that as it gets more painful and messy, Tad will not have to witness it. Legally, he is allowed to be everywhere with me, including in labor and delivery, but I feel as protective of him as I would of a toddler. I can’t show him that bloody unfurling, even though he has seen the entire range of my emotions, because his only fears reside in the physical.
My terms of endearment for Tad include: Tadli (spelled li instead of ley, because in Swiss German, li is a diminutive), Tadster, Thumper, Sniffer, Squeaker, Sneezer, Mister, Dog, Buddy, Boy, Goofy, Dork. Your father calls him Buddy Boy and Tadster. I wonder if I can adapt any of those terms of endearment for your arrival, but most of those words are related to action. While Tad’s actions will not change much over the course of his adult life, yours will change tremendously. You were “a real kicking dude” in another (unpublished) entry, but someday you’ll be walking and then running. And thinking and falling in and out of love and learning. So who knows how we will name each other in the years to come?

A Sad Story with a “Happy” Ending

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.

Navigator

Now that I’ve alerted my family and friends about my pregnancy, I’ve thought and thought about what, from my baby journal, (yes, from the day I found out, I’ve been keeping one), I could publish here. Some people are braver than I am and put it all out there. I can’t do that … yet. But here is one entry I feel relatively comfortable unearthing.

I am reminded of interviewing Elaine, a woman who is about my age and who was raised by blind parents. She said she constantly grew up with people being impressed by very ordinary things. It’s happening already while you’re in utero. I’m glad there is a small period when you’re immune to it. Even after birth, it will be a few years still until you fully understand what goes on for me every time I encounter random strangers. People either ignore me, which is sometimes preferable, sometimes not; try to help, whether I want the help or not; or ask weird questions. I am cringing about the days when you’ll have to witness one (or several)? Of these conversations.
During my first trimester sequential screening, which consisted of an ultrasound and a finger sticking, the Hispanic receptionist thought for a second I was in the wrong place. “How could she be pregnant?” She did not actually say this out loud. I think she just asked what I was doing there or something like that.
“I have an appointment,” I told her calmly. I could hear myself, the way I sometimes can in dreams, this calm, faraway self, asking her for assistance with yet more paperwork, telling her that yes, I’m employed and work fulltime in technical support. (This last is a slight exaggeration. I do help people with disabilities to use their technology, but there is a point of brokenness beyond which I can’t go). All of this happened in a sort of serenity I had not thought possible, but I can take something from my mother, a woman who is slow to anger and even slower to reveal her anger. If you’re calm, then you’re not starting anything, and if you’re not starting anything, chances are people will leave you alone. While I know that mindset won’t always work, that it didn’t for her and won’t for me, that there were times she had to advocate and not hide, just as I’ll have to, I can understand its benefits. If I’m calm, maybe no one will tell me I’m not allowed to raise you?
Anyway, I got into the ultrasound room, and the Caucasian tech said, “You get around pretty well, don’t you?”
“Yes,” I said. I never know how to answer that question. On that particular trip, the white cab driver dropped us off at the wrong building, so I had to ask for directions from a kind African-American receptionist in the main building. She promptly abandoned her post and walked with me to the right building, the right floor even. She didn’t ask why I wanted to be in the maternity area, and she disappeared tactfully after I thanked her without announcing to the entire room that she “brought” me there. I wished she could stay. She probably would not have almost said, “No, right?” after asking the employment question.
But my point is that I didn’t really travel well, or at least without help. Then again, I depend on people to read signs, even if I’m traveling alone, and some of them get it wrong, so that I have to undo, not only my mistakes, but theirs with the help of mistake undoers. There will be a point when you’re privy to these escapades. There might even be a point when you start reading signs for me at age six or seven, better than the adults around us. You will interrupt my asking of directions to point out that you know exactly how to get wherever, and you will actually be right. I do not want you to be ushered into the world just to be my reader, my navigator, and yet this might happen from time to time. I still want to be the parent, and I still want you to have a “normal” childhood. That won’t entirely happen, but I’ll cling to that dream as tenaciously as I can.

On Jean Little

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.

Transcribing

I’m home with a cold. It’s not even a bad cold–in the history of my minor sicknesses, I’ve definitely had worse, and this may be one of the better ones, actually, because I’ve been drinking pitchers and pitchers of water. But I know 7.5 hours on the phone will not help today. Tomorrow I’ll go and abuse my voice, but I’ll take one recuperating day.
Sometimes I wish I did not have a job whose primary responsibility is to talk. It could be so much worse. I could have a job in which I don’t have the flexibility to take off when I’m not feeling well. I could have a job without benefits. I could be jobless.
Anyway, I’ve been prepping for the NLS trial manuscript. For those of you who don’t know, the NLS is the National Library Service for the Blind, a branch of the Library of Congress, and they have a certification process that enables a person to become a certified braille transcriber. My requirement to pass is that I have to submit a 35-page literary braille manuscript; with Sheila’s help, I chose Thinking in Pictures by Temple Grandin. Actually Sheila gave me this entire idea in the first place and allowed me to use it as my braille work for last semester. The brailling was easy, but the formatting and proofreading work gave me a deeper respect for the work
transcribers do. Sheila also kept telling me things like, “You can really get some decent income from transcribing” and “I earned nine thousand dollars this summer transcribing.”
But it wasn’t until yesterday that I really started thinking of this gig as more than an exercise. My friend,

To See or Not to See: A Blind Writer’s Struggles with Sight Words in the English Language

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.

Cheering for My Colleague

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.