Members of Emmanuella's advocacy group.

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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Please Do Not Grab Me: 5 Tips for Interacting With Blind People

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Throughout my daily life, I have the opportunity to meet a large number of wonderful people who prior to our interaction were complete strangers to me.  On the other side, just as frequently, I have the misfortune of being treated as less than human. This wide range of experiences is thanks solely to my traveling companion, my white cane.

Living in a big city means that most people travel through their day in their own thought bubble, moving quickly from one appointment to the next. Most hardly remember anyone they pass on the street — that is, until the white cane is present. The white cane is meant to help blind people feel our way through the world while also serving as a signal to others that we have a visual impairment. Most people recognize the cane as a symbol, but unfortunately the education stops there. Many people don’t understand how to interact with us, or even worse, sometimes do things that put us in physically dangerous situations.

I realize this might sound a bit strange to a sighted reader, especially someone who is kind enough to want to help when you see a blind person, but there are helpful and unhelpful ways of interacting with the blind. Hopefully this incomplete list will take the mystery out of interacting with your friendly neighborhood blind person. While we may seem like a mysterious people at first, I promise once you have some of these down, it will take away a lot of the guesswork.

1. Blindness is diverse. Many sighted people believe that blindness means complete darkness with no usable vision. While there are some who experience this, they are in the minority. Only about 15 percent of people considered blind have zero vision left. The rest of us have varying degrees of vision remaining, and often that vision is unpredictable. It can vary based on the time of day, lighting, tiredness, or type of object, to name of a few variables. Don’t be surprised if you see someone with a white cane reading his iPhone or ordering off a menu but unfolding the cane to travel. Also, not everyone with severe vision loss uses a cane. Some have guide dogs, while others may choose not to use a cane at all or only in certain environments.

It’s best not to assume the level of vision of someone with a white cane, beyond understanding it’s far more limited than someone with “normal” vision. Most of us can navigate our lives without always bumping into things or getting lost. Many of us use regular technology with some adaptations such as voiceover and magnification. I know it might be confusing seeing someone check their phone and then continue walking using a cane, but humans are amazingly adaptive creatures and there is a lot of great technology available.

2.  We don’t always need help. If I am traveling alone, I will inevitably be stopped and asked if I need help.  When I’m traveling with friends, it’s not uncommon for a stranger to stop my friends and ask if I need help (I’ll come back to this later).  While we appreciate your kindness and concern, we also understand that some people imagine what it’s like to be blind, think it would be impossible for them to function and project that on us. Please don’t
assume if we are blind, we must need help.

Most of the time, we do not need help. I’ll let you in on a secret as well; we sometimes get annoyed at this because the offering of help can slow us down when we are in a hurry, and honestly, it can get a bit tiring.  I’ve been known on occasion to wear my ear buds as a “do you need help” repellent.

Most of us have received mobility training. We were taught safe ways of navigating the world. We have learned how to cross streets, navigate paths, and move safely with a cane or guide dog. Our daily routes are familiar, and when we go to new places, many of us use apps to help guide our journey.

If you do feel the need to ask if the blind person walking past you needs help, or if you see a blind person who looks like they do need help, here is how to do it. As you see the blind person, ask yourself, “Does this person look like they are lost, confused, or unsure? Or do they look like they are busily getting on with their day?” If the answer is no to the first question and yes to the second, then resist the urge to offer help. If the answer is yes to the first question, continue to the next step.

Quickly introduce yourself and ask if help is needed. Here is an example: “Hi, my name is Tom. Do you need some assistance?” The name creates a bit more of a connection and humanizes the experience.  Offering the help in this way is friendlier, and even if we are in a hurry, you’ll more likely garner a friendly response, even if the answer is no.

If the answer is no, please respect that. If the answer is yes, ask with what
specifically the blind person needs help. We may need help crossing a street, but just because we are stopped at a corner doesn’t make that so. We may need help with directions, or just a quick question answered.

Finally, many of us are assertive and will ask someone for help before we are asked. We do appreciate friendly offers and sometimes will accept them, but please do not be offended when we do not want or need help.

3. Please do not grab us. If you are unfamiliar with this scenario, allow me to elaborate.  A blind person is waiting to cross a street when she is approached by a sighted person who may or may not have asked if help is needed. That sighted person next proceeds to grab onto the blind woman’s upper arm and pull or push her across the street. Most sighted people believe this is the best way to guide a blind person; it is not.

On a practical level, this is very dangerous. By pulling us along, you take away our ability to effectively use our canes to feel uneven pavements, steps, and other obstacles. While it might seem safer to you, it is actually more dangerous for us. We can fall, walk into objects, or be pushed into other people. Even the grabbing itself can cause injury. I was once bruised by a woman who grabbed me without permission and held on too tight. It’s really a precarious situation and not helpful.

Let’s think about it on the level of personhood as well. If a stranger grabbed an
able-bodied person without permission, that would be assault. What about  blindness causes the sighted world to forget we are deserving of the same respect? Grabbing can make some blind people feel infantilized, as there is a hegemonic infantilization of people with disabilities lurking under the surface of conscious awareness in our culture.

Finally, it can be emotionally trying for us. As a woman traveling alone, being
grabbed is terrifying. I find myself needing to prepare myself for the grabbing that may take place as I travel throughout my day.

So now that I’ve given the doom and gloom part of this, how do you guide someone? It’s very easy; first, ask! If you are aiding someone, please ask him if he would like to be guided. If he says yes, then still do not grab him; allow him to hold your upper arm. In this way he will get a wealth of information about the landscape, obstacles, and oncoming people by feeling your movements.

4. Be specific. Like everyone else, sometimes we need directions. If a blind person asks for directions, please tell them specifically where to go and do not rely on visual markers. For example, tell the person “Walk three blocks in the direction your are facing and turn right before crossing the street.” This is more helpful than “Go that way until you see the bank and turn left.”  The more specific you can be about distance and direction, the more helpful the directions will be.

5. It’s all right, you can speak to us. Some people seem afraid to ask us questions, as if they will somehow remind us we are blind. I promise, it is always better to ask me questions related to me rather than asking my friends.  This happens less frequently, but when it does, it’s usually in restaurants. For example, the host sees the white cane and asks my friends what he should do with my menu instead of me. Sometimes the wait staff will ask my friends what I will have to eat, as if I am unable to speak for myself. Or on occasion someone
will approach the group and ask them if I need help.

These situations are some of the most frustrating for blind individuals. The only way to describe the feeling is like being a child or an outsider who doesn’t belong in the adult social setting. Please know that if you ask us as opposed to defaulting to those around us, you are not embarrassing us. In fact you’re helping to make us feel like everyone else.

Beyond these tips, the best way to interact with a blind person is to recognize we are all human. The cane is a sign that we need more space when walking; we might walk into you if you don’t move, and we may not react quickly in certain circumstances.  See it as a symbol of how we navigate the world differently, but then let go of the cane and see us as unique individuals. And if
you are ever unsure, you can always ask.

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Why I Struggle to Accept My Cane as a Legally Blind Person

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There’s a saying to never judge a book by its cover. But upon hearing the term “legally blind” associated with me, many people automatically assume I come packaged with a white cane and sunglasses.

Except in most cases, I don’t. But I do have one on deck.

When I was in sixth grade, my vision therapy teacher started taking me out of school every week to partake in mobility lessons and community inclusion. Amongst the many tools and tricks used for me to interact with society independently, the white cane was introduced. The goal of the cane was to be used as an identifier, to show people you are in need of assistance should something come up.

From the first day I had it until now, I feel weird as hell using it.

Although I am legally blind, my vision is just enough to distinguish obstacles like window panes and stairs, which a cane helps its holder navigate around. So I never really saw the point in using it — although, to be fair, I have since cracked it out a few times when I moved down here as I learned the traffic patterns and crosswalks I would need to be accustomed to in my neighborhood. And I have also used it on days where my migraines would make me see the world with one eye open. Nevertheless, I still felt odd bringing it out. Not because of the attention I would receive while using it, but something else that is hard to put into words.

I want so desperately to try to use my cane more, as it will help me come to terms with myself and my own awareness of my body and disability, but at times, I feel there is a stigma involved. It’s almost like that “fat lady on a scooter” stigma when you see one in a WalMart. Why do you need a scooter when you can walk? Why do I need my cane when I can (sort of) see around me?

I feel almost like an imposter, using something intended for someone far “worse off” than me. As if whatever ability to see I have isn’t enough to warrant its use. I don’t want to be that person on a bus with a cane as I am on my phone checking Facebook. It looks weird… and it becomes hard to talk to strangers who may want to accuse me of some wrongdoing. I hate dealing with altercation, especially if it’s in public. I just want to be me, no questions asked.

Once in a while, I take my trusty cane out for a spin. But for the most part, she rests in my closet, waiting for the next new adventure into the great unknown.

As to when that will be, the world may never know.

This post originally appeared on Legally Blind Bagged.

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To My Guide Dog's Puppy Raisers: Thank You

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I thought the sudden snow storm that Saturday morning was nature’s way of telling me I did not have to go tour pre-schools for my almost 4-year-old daughter. My husband, on the other hand, was hell-bent on not letting a little snow get in our way. We had arranged for baby-sitting with my in-laws and headed out the door that morning. Me, my husband, and my guide dog, Frances.

“Goodbye, Mama,” my almost 4-year-old shouted as I grabbed my purse. “I hope you have fun looking at my new school.”

I wanted to throw up. Literally. Even with September almost nine months away, the thought of my “baby” leaving me every day, entrusting her safety to strangers, filled my mind with dread. When we finally found ourselves sitting in the parking lot that snowy January morning, my husband assured me we were doing the right thing. Frances snuck her head behind the back seat and licked my ear. “Let’s go, girl.” I said.  And with that, she hopped out of the car and I snapped the leather handle into the harness. “Forward, Franny.” There was no turning back now.

The weather had deterred a lot of people from attending the open house that morning, placing more unwanted attention on my husband and I, the obviously nervous blind mother and her snow-covered guide dog. When we finally were escorted into what could quite possibly be my daughter’s classroom, I felt as though I was going to have a panic attack. All I could see were clothes lines with papers hanging from them, the silhouette of a wooden toy kitchen and endless rows of tiny desks. My eyesight prevented me from seeing any further and the negative self-talk commenced in my head:

How are you going to get her here every day? 

What if the kids pick on her because I’m blind?

Am I going to be able to volunteer in the classroom?

Will the teacher…

My last thought was interrupted because Frances decided to intercede. My beautiful, furry partner pressed her body close to mine. Franny lifted her head and looked up at me, as if to say, “Hey, Mom, we’ve got this. You and me. We’ve got this.” And that’s when I thought of you, her puppy raisers, and how much your immense sacrifice has impacted my family.

Puppy raisers like yourselves play such an integral role in preparing these remarkable dogs to be our guides. I want you to know that I think of your sacrifice during times like these. When I feel the foreboding sense of doubt in my abilities to live an independent life, it gives me strength to consider how you and your family volunteered to take in an adorable, cuddly, puppy.

Nobody asked you. Nobody forced you. You knew the commitment involved. You knew it was going to be hard. As Frances’ raisers, you looked after her, cared for her, carefully laying the foundation for her training. For close to a year, you kept and loved the dog fate had decided would come to me, all the while knowing that one day you would say good-bye, perhaps wondering if you would ever see her again.

I don’t pretend to know why you and your family chose to make such a heart-wrenching sacrifice. I can only tell you what that sacrifice has provided for me as a wife and mother of two little girls.

My husband no longer worries when I leave the house alone. Fears about me falling or getting lost are a distant memory now that I have Franny by my side. I can pick up that container of strawberries and bushel of bananas at the grocery store 14 blocks from my home – alone. I can attend work functions without loading two kids into car seats and being chauffeured by my spouse. I can even walk to Starbucks and get a cup of hot chocolate on my own, 20 minutes of mom-free time, where I get that much needed break to reconnect with myself.  Having Frances has given me that – you have given me that.

My daughters, ages 2 and 3 love that yellow Labrador as much as any child could ever love a dog. They hug her, play dress up with her, invite her to tea parties. All the while, “St. Frances” puts up with being squeezed, shoved, and adorned with pearls and tiaras. When my daughters wake up every morning, Frances circles each of them, her tail intently wagging, as she sniffs, licks and showers them with affection. While I will attribute some of her temperament to Guiding Eyes for the Blind’s fantastic breeding program, I would be remiss if I did not give your family credit for part of the calmness and gentleness in her demeanor. Undoubtedly, in her training, you must have had our Franny around children because she has happily assumed her role as backup mother for my daughters.

There is a piece of your family that beats within the heart of my dog. I feel it every single day when I grip Frances’ harness. I think of you every time I make it to the mailbox or find that elusive flight of stairs. I think of you on days it rains, or snows, and I’m still able to make it to that doctor’s appointment without canceling. There are times I have even thought of you when I was able to find the ladies room with my little girl who “really had to go.” A part of you is with us every single day, on every single route.

With pre-school fast approaching, maybe you can relate to the anxiety I’m having over letting go of my little girl. It must be very similar to how your family felt the day you let go of Frances, so another person you never met could benefit from her training.

I want you to know this amazing creature we both have grown to love is more than just my guide dog. She’s more than a mobility tool. She has become my partner, my friend in blindness, and my partner in crime. Every day Frances gives me confidence, self-assurance, and a level of independence I had only dreamed possible. So thank you to Frances’ puppy raisers and to Guiding Eyes for the Blind, for giving this mother of two my four-legged angel, complete with leather harness.

With Franny by my side, I know I’ll be able to navigate pre-school. After all, “We’ve got this.”

Follow this journey on Blind Motherhood.

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