Stack of books on a table.

Why We Must Save Bookshare for People With Disabilities

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Author’s note: Bookshare, a service that provides large print and Braille digital books for people with print disabilities worldwide, is currently in danger of losing federal funding. As a student with low vision, I have been using Bookshare since 2011 and it has dramatically changed the way I read. Below, I have written a sample letter for my local congressmen and senators so they can see how important this service really is. Feel free to use my letter as a template to send to your local representatives.

Dear (Representative),

My name is Veronica, and I am a college student here in Virginia studying software engineering and assistive technology, to develop tools for people with disabilities. I graduated from Virginia public schools in 2015 with an advanced diploma and a 3.8 GPA. In addition, I run my own blog about assistive technology and disability life at www.veroniiiica.com. This wouldn’t have been possible if I didn’t have Bookshare, an accessible media library that’s in danger of losing federal funding in fiscal year 2017.

I have low vision, which means I can’t access standard print materials and require large print. Large print books can be very expensive and hard to find, and sometimes the font size isn’t big enough. Bookshare digitally scans in books so users can access them in whatever format suits them best — large print, Braille, or audio. Almost any book that can be found in the local library can be found on Bookshare, and I can read the same books my peers are reading. I’m not just limited to the small large print selection at my library or the even smaller selection at the local bookstore.

I have been using Bookshare since 2011, and it has helped me tremendously both inside and outside of the classroom. Before I had Bookshare, I would have to order large print books that would take weeks to come in, and then I would have to catch up with the rest of the class on the reading. My classmates would talk about books they had read for hours on end, and I would often be excluded from the conversation because large print wasn’t available for the book they were talking about, or the book would be too heavy for me to carry around, like in the case of the Harry Potter series. Once I got Bookshare, I could carry my books around on an e-reader or tablet, and download a book almost instantly to read in class. I started reading more and more, and was able to join more discussions in class.

Education is invaluable, and with accessible materials, more students are able to learn and go on to pursue higher-level education, enter the workforce, and contribute to society. By making these materials accessible, students can thrive in the educational environment, as opposed to failing because they can’t see the materials and believe they just can’t learn.

People with disabilities are the largest minority, with about 1 in 5 people having some type of disability. Disability affects all economic classes, races, nationalities, and other demographics. By funding Bookshare, it ensures that more than 400,000 people with print disabilities are able to access materials. Without it, the responsibility would fall on state and local governments to provide for their students, and the selection wouldn’t be as large, easy to access, or as inexpensive as Bookshare. Bookshare is able to create materials at a cost 15 times less than the previous national program.

I hope you will advocate to restore the Technology and Media FY2017 budget line to $30 million, the same as it was in 2016. Bookshare is extremely important to me and so many other students, and we don’t want to imagine life without it.

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Thinkstock photo by MaskaRad.
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Josh Sundquist's First Novel Explores Blindness, Identity, 'Love and First Sight'

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The following is an excerpt from Josh Sundquist’s debut novel, “Love and First Sight.”

Vice Principal Larry Johnston extends his hand.

To clarify: I don’t see this. I hear the swish of his shirtsleeve.

“Nice to meet you, William.” The fabric sound plays again—the hand retracting. “I’m sorry, I guess you can’t do that now, can you? You probably want to feel my face?” He grabs my arm and smacks my palm against his cheek, knocking me off balance so I have to step into the musk of his aftershave. “Where do you normally start? Eyes? Nose? Mouth?” He shifts my fingers across the front of his face with each suggestion. His skin is rough and pockmarked, like the outside of an orange.

“No, actually, I don’t do that,” I say, pulling my hand away. “I identify people based on their voices.”

“And…also…” I add. I can’t resist.

“Yes?” he asks, all eager to please.

“Well, I don’t usually touch faces, but I am gifted with a heightened sense of smell that allows me to recognize a person’s pheromones, which are concentrated just below the ear, so if you wouldn’t mind…?” I touch my pointer finger to my nose.

Love and First Sight book cover.
“Love and First Sight” book cover.

His excitement drops. “Oh… you want to… smell… my ear?”

“Pheromones are like faces to me. Only if it’s not too much trouble, sir.”

“Oh, no, no trouble at all. I just…No trouble, certainly I would like to accommodate you.” He steps close enough that I can feel the heat of his body, which is a signal that (a) he is falling for it — sighted people always do, the suckers — and (b) I’ve taken the joke far enough. I don’t actually want my nose anywhere near his old-guy earwax, after all.

“Mr. Johnston, I’m kidding.” I hold a hand up to stop him. It sinks deep into fat rolls, presumably around his midsection. I hope. “A joke, sir. I don’t want to smell your ear.” When I pull my hand away, I wonder if it leaves a visible handprint or even fingerprints in his squishy flesh. I’ve heard that happens when you press an open palm against a soft surface like sand, dough, or wet paint.

“Oh, right, yes.” He lets out a forced chuckle that sounds like a wheezy smoker’s cough. “A joke. Yes. Very funny.” Mr. Johnston’s voice is deep and grizzly. If you listen carefully, you learn that a particular set of vocal cords produces audio vibrations unlike any other in the world. Voices are the fingerprints of sound.

“Shall we head to your first class?” he asks. He grabs my arm from behind and starts to push me out of the front office. I’m sure he thinks it’s helpful to lead me like that, but I instinctively swap our positions so I am holding his arm instead.

“I’d prefer we walk like this,” I say. Now I’m in control. I can let go at any time.

“Yes, all right, that’s fine,” he says.

I’ve spent most of my sixteen years around other blind and visually impaired people, so this is the first time I’ve actually had to execute a Hines Break in real life. Fortunately, Mrs. Chin made me practice so many times I could do it automatically with Mr. Johnston. The main purpose of this little arm reversal is that it puts me in charge. To put it in dating terms, I can now be the dumper rather than the dumpee. I’ve heard the horror stories: Blind people standing on street corners waiting for a crosswalk light to change, only to have a well-meaning but annoying stranger come up from behind, grab their arm, and say (overly loud, of course, because they always assume we are all deaf, too) “LET ME HELP YOU!” and shove them across a street they were not intending to cross. And then the stranger lets go and disappears into the void (“YOU’RE WELCOME!”), leaving the blind person stranded on an unknown street corner.

I feel the floor change from the carpet of Mr. Johnston’s office to the hard tile of the hallway as I follow him through the doorway. “Can we start at the front door?” I ask. “That’s where I’ll be coming in each morning, I assume.”

“Isn’t that where you came in today?” he asks.

“Yes, but my mom took me from there to your office.”

“Well, then, simply imagine that instead of turning into the office, you walked in this direction toward the stairwell, and you’ll be on your way to first period.” He starts to walk, presumably toward said stairwell. But I stand still, gripping his arm tightly so he is forced to stop. (Behold the mighty power of the Hines Break!)

“It doesn’t work like that. I can’t…” I drift off. I hate sentences that start with “I can’t.” But as it happens, I was born completely blind, so one thing I truly can’t do is imagine an overhead map and then make up different routes or shortcuts. I can walk from A to B, yes, but only if I memorize a list of actions: How many steps to take and when to turn and then how many more steps to take before I’m there. I can sniff odors like a bloodhound and echolocate sounds like a bat, but it is simply impossible for me to infer a new route using my imagination. “Look, Mr. Johnston, can we just start at the front door, please? That would be much easier for me.”

“Are you sure you don’t want us to assign you a full-time aide? The state would gladly pay…”

“I know, I know, but that’s not why I transferred here. Having a babysitter walk me around school every day is not going to help my street cred.” Honestly, it’s not just about my street cred. I transferred because I want to prove that I can live independently in the sighted world. No dependence on charity. No neediness. My parents sent me off to the school for the blind back when I was little. Right after the Incident. It was “for my own good,” to “protect me,” and blah, blah, blah. But if I want to eventually land my dream job, to make a name for myself as the Stevie Wonder of journalism, it’s not going to happen within the confines of the blind bubble — excuse me, the visually impaired community. I have to go mainstream.

I hear Mr. Johnston sigh. But when he speaks, there’s a hint of sympathy in his voice, as if maybe he was once young enough to care about his own street cred. Or maybe he still does. “Very well, William, to the front door we shall go.”

He guides me there. “First I need to get my bearings,” I say.

“Well, the door is in front of you, the wall is beside…”

“No,” I say, pulling my iPhone out of my pocket. “I literally need compass bearings.” My compass app tells me I will enter the building facing west. Got it: west. (Seriously, how did anyone get by before talking smartphones?) “Mr. Johnston, let’s head to English. If possible,” I say, “please walk in a straight line and tell me when we are going to change directions.”

“Very well.”

We walk twelve steps west, twenty-three steps south, and then turn west again. Mr. Johnston tells me we are at the base of a stairwell. I hear footsteps rushing by on both sides of us, students in a hurry to get to first period. Up to this point, I’ve kept my white cane folded in my back pocket. No use drawing attention to myself if I don’t have to. But I’ll feel safer using the cane on stairs than relying on a vice principal with a lifetime total of three minutes’ experience guiding a blind person.

I pull it out and, with a quick flick of my wrist, snap the whole thing open. People have told me this looks like a Star Wars lightsaber turning on. That’s not a particularly helpful description for me, though. Which also makes me wonder why it’s called a “white cane” in the first place, since the people who use them can’t see its color. Anyway, I reach out for the handrail, but my fingers grab something soft instead. A body part. Chest level. Boob alert.

“Oh, my God, I am SO sorry, I tooootally didn’t see you there,” says a female voice. That’s what a white cane will do for you: Not only can you get away with copping a feel, the girl assumes it was her fault and apologizes for it. Let me assure you, random girl, you have nothing to be sorry about. Completely my fault. And my pleasure.

“No problem,” I tell her. “I didn’t see you, either.”

She doesn’t laugh. She is already gone before I say it, the sound of her footsteps lost in the shuffle. I hate that. When I discover I’m talking to someone who has already walked away. Feels like when you tell some long story into your cell phone and you wonder why the person has been silent for a while and then you realize the call was dropped at some point.

At the top of this flight of stairs, Mr. Johnston tells me we are going to turn 180 degrees and go up another. I continue to climb with one hand on the rail and the other pencil-gripping my cane as it surveys the next step. Once we’ve reached the second floor, I fold the cane and return it to my right back pocket. I can feel how the fabric of my jeans has stretched around that shape, the form of my folded cane. For the first time, I wonder if this distortion is visible.

Footsteps drop all around us like a heavy rainstorm. As Mr. Johnston guides me eighteen steps east through the crowded hallway, he shouts, “Clear a path, people! Blind student coming through! Blind student coming through!”  Wow, thanks, Mr. Johnston. I’m sure this is gaining me so many popularity points at my new school. My election as Prom King is now all but assured.

We pause at the door to my classroom so I can dictate the directions into my phone. (“Enter building, walk twelve steps west, turn south, walk twenty-three steps…”) I’ll have Siri read them back to me after school until I’ve got the route memorized.

“Attention, everyone!” Mr. Johnston says as soon as we cross the threshold. His voice sounds pleased, maybe even surprised, by its ability to silence the chattering room. “This is Will, a student who has transferred to our school this year. He’s blind.” Perhaps because this is English class, he adds a helpful definition of the word: “He can’t see anything… nothing at all.” He pauses to allow the gravity of my tragic situation to sink in. “Life is very difficult for him. Please offer him your assistance whenever you can, because…”

“You know I’m still standing right beside you, right?” I interrupt. There’s a snort of laughter from the students, and Mr. Johnston’s arm stiffens against my fingers. It’s probably unwise to make fun of your guide, the guy who has the capacity to lead you, say, directly into a brick wall. But come on, I don’t need eyesight to know his speech was making the entire room squirm.

“Yes, William, I—I…” he stammers.

“Listen, sorry, I appreciate your help,” I say. “Can you guide me to the teacher?”

“I’m right here, William. Or do you prefer Will?” asks a female voice standing maybe two arm lengths away.

“Most people call me Will,” I say.

“I’m Mrs. Everbrook. I’ll take it from here, Larry.”

“Very well,” says Mr. Johnston. “William…er, Will, I will meet you at the end of this period to escort you to your next class.” He shuffles out.

“The bell hasn’t rung yet, boys and girls,” says Mrs. Everbrook. “Until it does, you can go back to texting underneath your desks and I’ll go back to pretending I don’t notice you have your cell phones out of your lockers.” Unlike Mr. Johnston’s, hers sounds like a voice people listen to. “Will, there’s a desk open immediately to your right,” she says. I sit. She continues, “I was told you’d be in my class, so I’ve already talked to the library, and they can get you all the books we’ll be reading this term. Do you prefer braille or audiobooks?”

“Braille, please. And thank you. For talking to the library, I mean.”

“No problem. Whatever else you need, just ask. I’m happy to help. Otherwise, you get the same treatment as everyone else. This is Honors English, and I expect honors-level work from you.”

“Thank you,” I say. “That’s very nice.”

“You may change that opinion after I grade your first paper. No one has ever accused me of being nice. But I try to be fair.”

“Then I hope this request appeals to your sense of fairness: I type notes into my phone during class so that it can read them back to me later. Is that all right?”

“Fine by me. Just don’t let me catch you texting your girlfriend during class.”

If I had a girlfriend, I think. I dated several girls back at the school for the blind. But it would be different here. Dating a girl without a visual impairment, I couldn’t help but be beholden to her. Dependent. Needy.

“Oh, no girlfriend, huh?” she asks.

“How can you tell?”

“Your inability to see doesn’t stop your face from speaking what’s on your mind.”

“Hmmm. Well, I did meet a girl downstairs this morning. She seemed nice.”

“Anything else?”

“She was also very apologetic.”

“I don’t care about the personality of your crush, Will. I mean any other accommodations you need?”

“I wear one earbud in my ear.”

“Because?”

“My phone reads everything on-screen to me — the names of apps, the selections on menus, all that. The earbud will let me hear the phone without disturbing the class.”

“How about that? Anyway, it’s fine. You can use your headphones. Just don’t—”

“Let you catch me listening to music in class? Got it.”

“I was actually going to say anything other than country.”

“What?”

“Don’t let me catch you listening to anything other than country music during my class.”

“I’m not into country, so I guess I’ll just be listening to you teach.”

“I like you, Will. I think we’re going to get along just fine.”

Which is good, because it turns out I have her again for third period. And that class begins with a major social disaster.

If you enjoyed Chapter 1 of “Love and First Sight,” you can purchase via Amazon or learn more on Josh’s website.

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How Living With Blindness Can Open Windows of Perception

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Many people in society seem to believe blindness is a fate worse than death. As a recently blinded woman, it wasn’t until I lost my sight that I realized blindness is just a different way of perceiving the world around me — certainly not a death sentence. My “dark” circumstances have caused me to open my sightless eyes and see blindness in a different way. I’ve learned that blindness is not the end of life, but rather, the beginning of a new chapter and a different way to live a happy, productive and fulfilling life. And I would argue, even better.

But blindness is not the problem. It’s managing the people around you. If you’re blind, that’s what society sees first. Since my ability to perceive the world is now different, the way I’m perceived by others has also changed. When a friend recently pitied me saying she was so sorry I had to live in darkness the rest of my life, I realized that my visible disability — made ever so apparent by my dark glasses and white mobility cane sweeping and tapping about — marks me to some sighted people as someone who must be living a sad, lonely and unfulfilled life. However, I live in the same world, do the same things and go to the same places I did before I lost my vision, and then some.

First of all, I do not live in “darkness.” I know it’s hard for sighted people to understand that, but blindness is not like closing your eyes and being plummeted into a world of terror and panic that sighted people assume it is. I work, write, hike, swim, kayak, race sailboats, perform music, go to parties, dine out and perhaps the most fun, shop ‘til I drop. (Yes, blind girls can do all the girly things sighted women like to do!)

Your brain can rewire itself to recognize the world in a very different way by using your remaining four senses, sending information deeply into your heart and mind, mapping out the very rich and wonderful world of shapes and sounds, aromas and tastes, rendering a vivid impression of my surroundings in a complex, intertwined and profound way. This phenomenon is called “neuroplasticity,” an umbrella term referring to the brain’s amazing capacity to both physically and functionally reorganize and adapt or alter itself (“plastic”), helping it to remap itself in response to new situations or changes in one’s environment due to injury or loss of a sense such as sight. Although blind people generally don’t have any innate “superpower” senses as many people think, this dynamic re-mapping process of the brain does help us to learn from and adapt to different sensory experiences by paying attention to our other senses with a heightened level of sensitivity.

Yes, some people will pity me, thinking I have a horrible disability, while others, due to my ability to function effectively and navigate the world around me — particularly when I take off my dark glasses and fold up my cane and put it in my purse and “look” them in the eye as they speak — will say, “Carla, you don’t look blind to me.” I’m not always sure how to respond to that subtly accusatory observation beyond saying, “Well, guess what, you don’t look sighted to me!”

I’ve worked very hard to understand and accept who I am — simply a woman who cannot see with her eyes. And now, along with some adjustments, new windows of perception open up for me every day by using the many resources available for the blind. I do everything I did before I lost my vision and then some. Just like sighted people, blind people are diverse and unique individuals with different passions and interests, skills and talents. I have wonderful friends and spend as much time as I can with them, enjoying a rich and fulfilling life. The challenge is more about helping society become more understanding of and comfortable with blindness.

It may take me a little longer than sighted people to do things, but I just say “I can” and I do. That’s what it’s like to live with blindness.

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Why I Became a Disability Advocate in Nigeria

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One good thing that has happened in my life is developing the ability to understand my place in society and take a stand, even if I stand alone. I have developed the courage to understand that disability does not only affect persons who live with one, it also affects their relatives by blood or by marriage.

I have been married to a visually impaired man for eight years, and I have observed people seeing me through the different perceptions they have of a person with a disability. Some see me as an extortionist who wants to take advantage of a blind man. Some see me as an unfortunate young woman who is taking “shelter” under the refuge of a blind man, or as a kind woman who has decided to marry someone “no one else would want to marry.” Only a few see me without judgment.

I get irritated by their perceptions, and at times I used to tell my husband not to introduce me because I do not want to see the judgment in their eyes or words. But I think differently now, because I know their understanding is based on what they know. So I am ready to raise my voice for the change I want to see.

One fateful day, my husband and I boarded a public transport on the Bus Rapid Transit (BRT) lane. This transport provides quick access to persons with a disability; they do not have to queue nor buy tickets. At the boarding gate, the bus administrator harassed me, saying I cannot board the bus and seat since I did not queue with my husband. I explained to her that I have my ticket and I need to sit with the person with a disability I’m supporting in mobility.

Whatever people perceive of me or I experience in the environment, I have decided to take up a challenge to increase awareness of disability. I know ignorance is a major reason for discrimination. I can’t blame people for what they do not know, but I have to teach them what they need to know. In this vein, I founded the Disability Awareness and Development Initiative (DADI) here in Nigeria in 2015 with the sole vision to increase awareness of disability by building a network of voices to speak for inclusion in the public and private sector.

I have commenced by building a network of mothers and wives of persons with disabilities to create a platform where they can share their experiences, knowledge, mentor each other and strengthen their advocacy skills. We are also engaged in disability awareness outreach to schools, churches, mosques and corporate organizations.

This has become my life. I can’t exhaust the story.

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How Writing Poetry Helps in My Journey Toward Accepting Blindness

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I have an eye condition called cone/rod dystrophy. In fact, so does half of my mom’s family. Ours is a particularly dominant strain, so whereas many with CRD retain a considerable level of vision, most of us are either already totally blind or well on our way.

The way I explain CRD to people is this: say you want to do a photo dump onto your laptop the old-fashioned way — you know, with a USB cable. Except in this case, your brain is the computer, your eyes are the camera, and your retinas are the USB cable. Now, let’s say your USB cable has been worse for wear and has frayed, causing limited access to your photos. In the case of cameras, oftentimes replacing the USB cable will easily get you back up and running. But every once in a while, an electrical shortage can cause loss or corruption of files, and the same is true, however metaphorically, of retinal deterioration. No USB cable, no picture. Simple as that.

But I’m a poet, so prefacing aside, I’d like to give you a glimpse into living blind… in verse. I have included three poems here that are rich in imagery, giving insight into my sensory experiences; but in addition, each takes a different angle on my journey toward accepting blindness. I’ll let you guess which is which. But I’ll give you a hint — check out the timeline. I can’t speak for those who’ve been blind since birth, or even on behalf of all blind people. But perhaps the reason why gradual or even sudden vision loss can be painful is because you never know when it will happen, and something you had is being taken away. It gets better, though, and you can learn to find beauty in the disjointed. Picasso was on to something.

Optical Illusions  — March 2011

I walk on an endless plane

where ground and sky are one.

People are characterized

by articles of clothing:

floating T-shirts and pairs of shorts

contrasting

with a non-descript, grayscale world.

Color does come to me sometimes,

like smatterings of paint—

a blue sky here, a golden sun there,

a green cloud of foliage—

especially red, like the red-shirted girl

from Schindler’s
List
.

The eye doctor waves hello,

but I see her white sleeve,

not her tawny hand.

I’ve been known to think a small tree

was a person.

I’ve flinched at unknown shadows,

even my own.

I turn like a sunflower

toward any emission of light.

I have personal firework shows each night

that bleed their way into my dreams.

Cones and rods fall away, Assailing me

with ghostly yellow and purple ripples.

Blood vessels burst, and my world bleeds red.

If I stare at something long enough, I can make it

disappear.

Sometimes, I can find it in me

to laugh at these optical illusions…

 

The Way I See It — July 2013

Beyond the train window,

vague impressions of buildings

fly past,

but they might as well be

mountains in Colorado.

I can see Christmas lights

best when they’re tangled;

they’re like fireflies,

glittering

in all their splendor.

A silhouette

is all I need to know

about a person;

I see no blemishes.

I’ve always wondered

why height, weight,

skin color,

or disfigurement

ever mattered to anyone.

We are

perfect

in our imperfections.

You see,

you may see the forest

for the trees,

but I see it

inches at a time,

and though I sometimes

mourn my loss of sight,

I find the world is

wondrous

the way I see it.

 

Earl Grey — September 2013

One sip of Earl Grey,

and the hot, earthy steam

on my face

suddenly turns

to a cold, salty mist.

I open my mind’s eye

and behold a memory from

some thirteen years ago,

of my ten-year-old self

leaning up against

the railing of a ferry,

staring in wonder

at the iron sea below,

teeming with foam

as it laps against the siding

and reflects

the overcast sky

until they meet and merge

at the horizon.

After trying in vain

to see my own reflection

on the water’s surface,

I feel disappointed,

but only momentarily so,

for I am just as soon distracted

by the beauty around me.

Hindsight whispers

that it matters not

what I see;

rather, it’s how I see things

that counts,

and these visions

are my reflection—

not of my face,

but of my soul.

I glance down

at my tiny hands

gripping the railing,

and once more

they are grown-up,

illuminated

by my open window,

and lifting

a well-worn mug

to my expectant lips

for another sip

of Earl Grey.

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When I Realized I Should Have High Expectations for My Blind Sons

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Not too long ago I read a statistic that scared me to death: 70 percent of blind or visually impaired adults are unemployed.

It might not scare everyone to death, but for me, that statistic was heart-stopping. That number and the number of people it represents are huge. But when I read it, I wasn’t actually concerned about how many people it impacts. I was only concerned at that moment about two people: my blind sons.

My sons are blind due to a rare inherited eye disease. When we received the first diagnosis 16 years ago, all I could think of was, “He will never play baseball. He will never keep up with other kids. He will never drive.” I thought of all the childhood things I believed my son would miss out on. I sobbed over my visions of him never having a full life. You see, I had never met a blind person before. I had only known of a few blind folks – Helen Keller, Stevie Wonder, Ray Charles. All I actually knew about blindness was nothing at all. Therefore, I expected a life of challenge and hardship. My hopes and dreams for my son were gone.

I had such a bleak expectation of my son’s life ahead, I relied completely on the early intervention professionals to create his early education plan. I treated them as my therapists helping me cope instead of teachers who would help him thrive. I took all advice as golden because they had spent years in the blindness “world” and I was the newbie. I was so lost in my sorrow that I celebrated anything and everything I thought remotely looked like that old dream of a sighted life, without questioning it. I cheered when a teacher advised me that Michael had “so much” vision he would fight Braille, so just skip it. I was proud to hear he had such great muscle tone “for a blind child.” I breathed a sigh of relief that no one mentioned the white cane for my little guy.

As I was attempting to climb out of the devastation ditch I was in, I came across the story about a man named Erik Weihenmeyer who had recently climbed to the summit of Mount Everest – and he is completely blind. His story began to shift my expectation of what might be possible for my blind sons. If Erik could manage climbing a mountain without sight, surely we could figure out preschool. And when the time came, I believed my son was ready and able to attend a local “regular” preschool and move on to the local public school. I expected he’d survive and we’d figure it all out.

And figure it out we did. We figured out that we should have started Braille instruction earlier.  We figured out he was way behind in cane training. We figured out that we were shoving our son into a sighted world hoping for the best, instead of guiding him with the right tools to ensure his success.

I pressed on and investigated more blind adults who were having success, noting the tools they used.  I read about blind runners, musicians, and business leaders. I learned about assistive technology, Braille and mobility training. While my expectations for my sons’ lives were gaining new heights, I began to find that the expectations for blind children in this country are not so high, not high at all as a matter of fact.  Remember that statistic I opened with, that 70 percent of blind adults are unemployed? Now consider this, from Michael’s kindergarten Individualized Education Plan (IEP) – “Michael will find his cubby independently 70 percent of the time.”

My son was going to be expected to achieve only 70 percent of the time. Hmm, coincidence or direct correlation of expectations and achievement? When we read that goal in the IEP meeting, we asked “Does the cubby move around from day to day? Is it a hard thing for even sighted children to find the cubbies?” No and no. So we did not understand why Michael finding his cubby to hang up his jacket only a few times each week would demonstrate success, yet the other children would be doing it 100 percent of the time.

“We don’t want him to fail,” they said. “If we hold him to 100 percent and he misses on one data collection day, it will look as though he isn’t progressing.” It took a while, but we eventually made the case that if he is missing the cubby at all, he is definitely not progressing and things need to be put in place to teach him how to succeed 100 percent of the time.

And so began the journey of keeping our expectations of our boys very high. We hold each of them as well as their education teams accountable. We expected them to learn the Braille code with 100 percent accuracy. We expected them to learn the computer skills the sighted children were learning with 100 percent accuracy. We expected them to advocate for themselves, pursue their interests, and be kind, thoughtful and productive community members.

The results? Well, they are each in high school and middle school and are thriving… not just as blind children, but as kids in general. They pursue their passions, they try new things, they excel at schoolwork, they have ups and they have downs.  We are still learning the tools of blindness every day and we still constantly reach out to blind role models. Michael is planning for college and Mitchell is planning material for the standup comedy circuit (oh my). I think the only thing they have in common is their passion for student government. Each of them has found teachers, coaches, and other adults who have high expectations for them, and joined their teams in guiding them to their greatness. However, both Michael and Mitchell have had to demonstrate to more than a few folks that blind children are differently but equally capable of greatness.

I expect my children, the blind and the sighted, to pursue their passions and achieve their dreams. I expect that they will achieve their personal greatness… and you know what? All three of my children expect that of themselves. And that expectation of greatness allows them to be open to figuring out the tools they need and to build a team of support along the way.

I challenge everyone – parents, teachers, coaches, etc. – in all communities to heighten our expectations of our children and give them the guidance they need to not just survive life’s challenges, but to thrive.

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