My Love for the Relatively New NLS Braille on Demand Program Or: Am I Becoming a Luddite?

For sighted people who love to read and who have no reading barriers, for instance, economic hardship or learning disability, reading on paper or reading or listening electronically is a basic choice. For the blind child and then adolescent who loved braille and was of a certain generation–mine–reading choice was taken away, then gradually reinstated in degrees.

As a small child, I could listen to or read books from the library. I didn’t notice until years later that sound recordings, in general, were usually much more likely to be available. I just enjoyed the books. Once in a while, my mom and I would spend a Saturday morning boxing up library books I had pretended I owned, and she would drive the boxes to the post office. “You better be rich when you grow up,” she would say, “so you can have a house with an edition to store all of your books.” This was the late 80s and early to mid 90s, when electronic braille was just starting to be imagined and when most people couldn’t read books with it yet.

In sixth grade, my braille teacher–now generally just called TVI–and I had “the talk.” The “actually after a certain age, you don’t have the braille choice anymore” talk. Braille books were too big, they take up too much space, you don’t “need” this, you “want” this. I could continue to have braille for math and foreign languages. Literature if they were feeling generous that year. Science almost never. Social studies never. Perhaps as a consolation, she got me several plays and a book of Greek mythology in braille, which I read voraciously along with everything else I was reading.

My introduction to audio textbooks was the worst introduction ever, a sixth grade grammar book. Despite this, I became an audiobook poster child of sorts. I was fortunate to present the 1992 Alexander Scourby Award in narration of children’s literature to Barbara Caruso. Later I joined Recording for the Blind’s consumer advisory council and testified for the need for audiobooks before the NJ Joint Budget and Appropriations Subcommittee. After all, if we had no braille and no audio, how and what would we read?

But I still read literature, whether I could get it in braille or on tape. I called the library for the blind, and the patient children’s librarian, probably a little tired since I usually called before closing, sent me the books I requested, read me summaries of books she thought I might enjoy, and encouraged me to read and read and read. I did not read every book that showed up at my house, but I read a lot. I have fond visceral memories of my favorite books, some in audio, some in braille. I remember William Blake’s Selected Poems and Letters as a beautifully old, soft-cover book which had a wonderful smell of dust and many readers. I remember schlepping volumes of Ulysses across campus. I remember the beautiful voices of NLS and Learning Ally narrators who brought me Little by Little and A Tree Grows in Brooklyn, The Namesake and The Human Commedy.

I think of my life in book eras. Junior high and high school: you get what you get, and you don’t get upset. College: similar, but sometimes braille ended up being easier for them to make. Graduate school: cassettes had given way to audio CDs, hardcopy braille and recordings from the disabilities office changed into electronic files. On braille notetaking computers I was now downloading books to read. On my phone or the Victor Reader Stream, I was listening to books I was
downloading. I don’t know the librarians in the NLS library. Learning Ally doesn’t really have librarians.

I had also learned another hard truth about braille. Books for children were considered to be of paramount importance, so nonprofit organizations worked hard to make hard copies affordable, offsetting the transcribing and material costs with generous donations. Even so the number of hardcopy children’s books to keep was limited. I was and am inordinately fortunate to have a friend and mentor who transcribes the “off the shelves” braille books I want to read to my kids, as long as the braille will fit in the book, which is a parameter she and I both set after a few trials of bigger books. But if you wanted to own a hardcopy braille book that was not actually made, it could cost hundreds of dollars. I looked this up perhaps twice. Interpreter of Maladies by Jhumpa Lahiri: something like two or three hundred dollars. The Complete Stories of Winnie-the-Pooh by A. A. Milne: something like $850, and that was before inflation. You can imagine that after I found out about that one, I couldn’t bear to look up the cost of any more braille adult custom projects.

Then, a week and a half ago, I found out about the “braille on demand” program. Essentially, patrons can choose five books–any books in the library collection, children or adult–per month and receive the braille copies for free. As Dr. M. Leona Godin pointed out to me in her Facebook post advertising the project, she could hold a hard copy of Their Plant Eyes: a Personal and Cultural History of Blindness, the book she wrote, that she could read in her hands.

I immediately ordered my novel, Outside Myself, and a book of William Blake poetry. After considerable thought, I added an Italian language book, Household Words by Joan Silber, one of my former creative writing instructors and a current friend and mentor, and Dubliners by James Joyce. Next month, I’m thinking Rumi, Langston Hughes, a Portrait of the Artist as a Young Man, Helen Keller or John Hull or Robert Russell, and Jacquelyn Mitchard?I want a cookbook, because it’s more practical to read a paper book than to cook with a braille display nearby, but the cookbook I want is thirty volumes.

My husband, James, was also entitled to five books. He chose Across Five Aprils by Irine Hunt, Have Dog Will Travel by Stephen Kuusisto and an English translation of the Koran, which he thought was unattainable. He gave the remaining two books to the kids, so I chose Madeline stories and, of course, The Complete Stories of Winnie-the-Pooh.

For the first time in my life, I want gorgeous, unaffordable hardwood bookcases. I’m not rich by any stretch, but I do have a quirky house with a couple of parts of rooms which *might* work for containing a personal library. I want to eventually gather a collection that combines classics, contemporary literature and disability/blindness memoirs into one space. I imagine a braille museum, a peaceful place where I and all of the braille paper booklovers of the world–the many, many, right?–can just sit in this peaceful place and read. Not for the first time in my life, my wanting exceeds practicality.

I hope, as a braille teacher myself, never to tell my students they don’t have a choice when it comes to reading format. I hope someday to help more tangibly with this program and other library programming. And … books, books, books! Thank you, NLS!

The Loss of Quickly Delivered Paper Books

With the loss of the physical library, I ordered some books on Amazon. Unfortunately I waited too long, because “prime delivery” will arrive by April 23–Shakespeare’s birthday ironically enough. I know that Amazon is dealing with its own pandemic problems, and clearly they need to constantly evaluate and monitor their working conditions. But it’s truly tragic that paper books have very quickly become
nonessential.

The Life of a Blind/Sighted Family in Quarantine: Looking Back on the Weekend

Is it worth bringing my blog into circulation after five or six years off to write about coronavirus/Covid-19? For now, yes.

Note to everyone but especially to myself: This is not my finest writing.

Days 1-3: Pandemic life for the non-driver: Take nothing for granted–nothing!

I discovered that food delivery was completely booked in the app I was using–and I heard from others who are blind that their apps of choice were also booked. Whether they have cut off delivery altogether or whether there are a few fortunates who manage to get it is unclear. But I realized very quickly on Thursday when I finally tried it that we were now supposed to go to the store, to get grocery help from strangers who we weren’t sure were well or not. And even if people think they are well, they could have viruses. The “stranger” aspect is actually relative; your friends and family could also be sick. My mother was planning to visit, but her stomach was upset so she wisely stayed home for a few days. Anyway, I panicked and posted on Facebook. Several neighbors came to the rescue, offering to pick up whatever while on their trips and dropping it off at the door. James took what he doesn’t know is his final for a while trip to the store to grab some necessities. My mother also came with a load of food once she was feeling better for a few days, so for now we are well stocked. But wow! The “leveling of the playing field” is so fragile. Any global emergency can quickly tilt the fragile balance of equality for people with disabilities and other vulnerable populations.

Social Distancing

Even those who get it and support it don’t really get it, because the measure is so drastic. For instance, James asked about one of Langston’s friends, “Where has A. been lately?” Um, at home with her parents? Duh. But later I caught myself making a similar mistake when I almost met a neighbor who was bringing over food. Just in time I remembered to stay inside. A friend and I agreed to support my oldest son writing letters, but who knows what else we could lose? For now we have mail and calls, but anything can change.

Things My Nine-Year-Old Learned While Home
He learned the difference between coronavirus, the general term, and Covid-19, the specific crisis the world is dealing with.
He also learned that negative is a good thing in the case of a virus, and positive is actually what you don’t wanto happen!

“Bad!”

“Bad!”
I want to give Langston full explanations for his infractions. But that short, sharp bit of invective, the code word I’m sure my mother used with my brothers and me when we were toddlers and pre-schoolers, is the word I’ve chosen—or rather the utterance which bursts out of me–when Langston commits an act I can no longer dismiss as babyish cuteness or curiosity. He’s my baby, but at almost two, he’s not a baby anymore.
“You may not climb on the coffee table. That’s bad!”
“Stop throwing toys. It’s bad!”
Or sometimes, I forget to articulate what he has done wrong and just yell, “Bad!”
Then I give him my version of a timeout. I hold him on my lap for a few seconds. I don’t let him grab a toy or make me laugh, though the latter can sometimes be difficult! When we both can no longer stand each other, I ask Langston if he is ready to be nice, whatever that means.
“Yeah,” he says amiably.
As he wriggles away, I chide myself for my lack of specificity. But after a brief timeout, Langston usually returns to a state of relative equanimity.
I tell myself it could be worse. I could be cursing, abusing him or holding grudges. But how did all of my verbosity degenerate into a monosyllable? I feel illiterate. I feel like the mom of a toddler. The word, bad, has highlighted the differences in opinion my husband and I have about what is considered to be a real problem. James gets upset if Langston tries to turn on the stereo. I think Langston should learn how to access music, and furthermore, I would rather have him mess with James’s stereo than with my computer. My husband might think I’m a bad parent for letting him play with the stereo, but Langston knows the difference between on and off. But I guess the real problem with “bad” occurs when my son decides to try out the label. “Bad!” he said to me one day when I burped before I could get out my apology. It was an accusation I’d absolutely never given him when he burped, even when he forgot to say his version of “excuse me,” which sounds more like “thank you” to me. “That’s not bad,” I told him. “Burping isn’t bad.” Why, then, do I remind him to say “excuse me?”
A few days ago, I returned from a particularly frustrating day at my new job. It was hard to switch immediately from Teacher into Mom, and I felt the overwhelming adult need to eat, to check e-mail, to listen to the news, to think. Langston immediately intuits when I’m mentally not with him, and he figures out ways to get my attention. This time, he began throwing all of his board books onto the floor with a hollow, thumping sound. “That’s bad,” I told him tiredly, once I’d figured out that he wasn’t just trying to pick out a book for us to read together.
Still he kept throwing the books. I helped him to pick them up, and then he threw them to the floor again.
Finally, I turned him to face me. “Langston, books aren’t toys!” I said, “You don’t just throw them around and make noise with them. You pick one, and we read it.”
Langston seemed to mull this over for a moment. “Mess,” he said. “Mess mess mess.”
I had been trying to explain his potential mistreatment of the written word. But “mess” was as good of an explanation as any. And besides, wasn’t part of my frustration really annoyance about my having to make things neat again? “That’s right,” I told him. “you made a mess. Clean it up.”
“Na-nup!” he responded cheerfully, remembering the song he learned in daycare.
Together we returned the books to the coffee table, and I felt a partial sense of relief that I left bad behind, and Langston understood. Respecting words could wait for another evening.

Temporary Housing

We’re in an apartment supplied by the West Virginia Schools for the Deaf and the Blind while we look for more “permanent”
arrangements. In the past month, I’ve accepted a job in West Virginia and have moved our tiny family to the non-diverse, non-public transit otherworld. I can’t believe this has happened. You’ve adjusted very well, though, and I remind myself that lack of diversity doesn’t really affect you yet while you’re home with Daddy all day. Of course, then I think about your sudden and complete lack of exposure to other kids your age. But then I think you’ll get fewer diseases this year. The pros and cons endlessly loop in my brain, despite the fact—or because of the fact—that I’ve already made this choice for us. And you love our new apartment. Your favorite part of it is the sink, which feels like it’s made of stone, though it probably isn’t. It’s toddler height. You haven’t figured out how to turn on the water, so you ask me to turn it on, “Mama, wawai? Mama, wawai?” Then you stand entranced with your hands in the cold stream. Sometimes, you grab my hand and put it into the cool gush, too. No matter how hard I try not to, I can’t help thinking of Helen Keller during that moment, and I catch my breath at your sense of wonder about the water.

Rain

     This morning, your fever broke temporarily, and you pranced around the room with an orange ball with spikes on it.  You trotted to the open window, and together we heard the sound of the water dripping from the neighbor’s window air conditioner.  “Wain,” you said.

     “No, it’s not raining,” I said.  “that’s the air conditioner.”

     “No more rain,” you said, though it sounds like “no ma wain.”

     “No rain right now.”

     “Bye bye wain,” you said and skipped away.

     Daddy said you heard the wind when you were drifting off to nap, and you asked for rain again.  Later I was hoping you’d sleep by osmosis, since my other sleep techniques are kind of hit or miss—mostly miss—and you said, “Wain” as you heard Tad’s nails clicking on the pavement as Daddy took him outside.

     All of the sounds which prompted your rain prayer/declaration were similar to rain but weren’t really rain, just as your word, wain, is approximate.  Then again, my goal is that someday you’ll understand that rain is the phenomena in which drops of water fall from the sky, and though I know slightly more about clouds and the process than that, I’ve forgotten most of it.  My understanding, too, is approximate.

 

 

Dreamland Calls Me

The first time you decided not to fall asleep during our bedtime routine was, in a way, not the first time. For the first few months of your life, I struggled mightily to coax you into indulging in more than a cat nap. But I knew that those earliest months, you were learning the rhythms, you were hungry or cold or startled, and you were getting used to the world outside the cocoon of my body. But your father could, so it seemed to me, always entice you to slumber. You remained a catnapper during the days, but once you grew a little, you succumbed to my bedtime rituals—reading a story, playing with the book, and lying against me on the bed to listen to a song–as if I were a hypnotist. I would sing “The Water Is Wide,” “Kumbaya,” or “Swing Low, Sweet Chariot,” and the tide of your breathing would become deep and steady by the time I sang about possible unrequited love. Then I’d pick you up and carry you to your crib.
Oh yes, and I did hear Samuel Jackson’s magical voice reading Adam Mansbach’s book, Go the Fuck to Sleep, after I read about the hyp which surrounded its release, and while I found the book to be humorous, I felt the fortune of, somehow, having escaped from the kid who decides not to go to sleep.
Until the day you decided.
I don’t remember the date of your first decision to stay awake, but it was shortly before your ten-month birthday and right around the time your daycare director began, with our blessing, your transition to the toddler room. You’re still half in the infant room and half in the toddler room. In the infant room, you nap and hang out with seven girls. In the toddler room, you visit Circle Time and playtime and occasionally hang out on a mat during naptime.
And now at home, ever since that day, you refuse to buy into my bedtime routine. I read you books, and you listen, you play with them happily, but when we lie down together, you no longer want to hear about love in all its musical forms. Instead you roll onto your stomach, pop your head up as if from a jack-in-the-box, then sit up and start singing to me, “Baba dada” and blowing raspberries as you crawl obliviously toward the edge of the bed before you wail that I’ve interrupted your exploration.
“He won’t go to sleep, and it’s bedtime,” I yell to your father over your chatter and protests.
“Oh he never settles right down. He kicks his feet and moves around a little bit. You just have to keep him lying down.” “What if he rolls over and sits up?”
“Well,” your dad pauses. “I don’t know. But if he’s not tired, let him play.”
Your father, unencumbered by parental research, indulges you in routinelessness. However, I’ve read the same advice in all the parenting books and on all the websites: stick to a good bedtime routine, keep it short and simple, make sure you slow down the activity, if you stick to a routine, you will send the signal that it’s time for bed. But you, Langston—or maybe the experts–are sending me the signal that you can break that routine, and I’ve therefore failed as a parent. Already.
So I pull out the last stop, the one thing your father can’t offer, the breast, and you settle down to suck, and then you either drift away or give a cry or two when the milk is gone before you heed the call of dreamland.
Maybe this is just the new routine. As you gain the mobility to widen your world, the nourishment from my body comforts you and reconnects us, preparing you for slumber.

Oh the places you’ll go!

When all else fails, quote Dr. Seuss.
This is going to be a too-brief post, but I have to say that going places is my theme this week. Langston is transitioning to the toddler room at his daycare, Yellow Brick Road Infant and Toddler Center in Highland Park. The people are really being very understanding with this transition. Sometimes he plays with the toddlers and sometimes with the babies. Sometimes, he naps with the babies, and twice this week, he napped on a mat with the toddlers. This way, he gets to meet everybody, plus his own needs. I love that! But after some initial misgivings (and parental sadness about a stage beginning to draw to a close), I realized that this transition to the toddler room couldn’t come at a more perfect time, because Langston now crawls with a destination in mind. (I just had to stop writing, because he fell on his bottom, which normally doesn’t phase him except when he’s tired, and this time he was tired, so I nursed him into what I hope is more than a cat nap). Anyway, Langston now has places to go: the dining room table, the recliner, the piano. I’ve tried to turn him around to head back toward the couch which is his safe zone, and he turns around again! The nerve! 🙂 So when he gets too close to something I don’t want him to interact with/knock on top of himself, I take him back to the couch, so he can crawl over again. It’s tiring, and this is only day 2! I can see why mothers who never get babysitters for their babies might want to once in a while for their toddlers! But this stage is exciting, too. I’m thrilled that Langston stands holding onto things and makes more sounds. I’m excited about when he really starts walking and talking, even though those milestones present their own challenges.
Going places applies to my life this week, too, because this is the first time total strangers have commented on my blog. (I’m pretty sure they’re not just really clever spammers). I feel the urge, not only to thank them, but to follow up with a post which is extra well-written/poetic, which I’m just too tired to create right now. So I’ve decided that it’s better to write matter-of-factly than not to write at all. Not writing at all can lead me very quickly and easily into writing paralysis, which is a state when my critic runs amuck in my brain and keeps me from putting words down at all.
And on that note, due to the confidence boost I got from this blog, I’m going to do something which has been scaring me for weeks now, which I should have done a couple weeks ago and didn’t. That’s all I can say publicly, and please don’t ask me privately what I’m talking about. Just wish me luck. 🙂