What I'm Learning From My 'Chrysalis' Year as a Legally Blind Young Adult

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I’m leaving home tomorrow.

Even though a few months ago I left for the first time, this feels more real and substantial for some reason. Maybe it’s the fact that I’m going alone. Not that I’m flying alone, but that I’m going to really be “on my own” when I get back to my orientation and mobility training program in Seattle. This time, no one is coming with me to help, but it’s not a bad thing. Neither I nor my parents have any doubts — I can handle all of this.

To a lot of people, this kind of thing happens naturally and isn’t a big deal. But even though I’ve always been intelligent, things were more difficult to learn because I had much less vision than others in a sight-dependent world.

After graduation, I decided to take a gap year. Even though many young people do this, I wasn’t excited about it at all. I didn’t want to be any more different from other people than I already am. It turns out, the problem was really my perspective. Living and working with other blind and visually impaired individuals at this program has really opened my eyes (pun intended.) It hasn’t been easy. Going to this program feels like your disability is being shoved in your face every day, and that’s hard, especially knowing I am going to lose more vision as I get older. Everyone there has a lot of emotions about their situation. Each person has a story, none of us are perfect and we don’t always get along.

Blindness doesn’t discriminate. Rich, poor, tall, short, thick, thin, all kinds are affected by this impairment. To put it simply, the OTC (Orientation Training Center) is a lot of imperfect people trying to make the best life they can for themselves despite the challenges they face. That’s not a mantra or anything, just my personal assessment.

At first, I was a little disappointed looking at my friends’ college pictures, thinking “that should be me.” I got over it, though. This year was my chrysalis. I have two acceptance letters plus scholarships to great colleges and a ton of possibilities. I love myself and have more confidence than I ever have before. To be honest, it’s a wonderful feeling.

Although I’m surprised and proud when it comes to my metamorphosis, I didn’t write this solely for that reason. School was really hard. I was a caterpillar at one time. Sixth grade to 11th felt like I was crawling on my belly, trying not to get eaten. In 12th, amazed I survived to that point, I started to make my chrysalis. I know I’m not the only person who felt like school was more about survival than having a good time. You don’t know me, and I don’t know you, but if you’re thinking about giving up on yourself, don’t do it. Not for me or your S.O. or even your mom, but because if you give up, you will never get to know all the wonderful things you can be.

Follow this journey on The Blink Butterfly.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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How This 'Fabulously Chic' Icon Helps Me Feel Confident After Vision Loss

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Meeting the world on its terms after losing much of my eyesight was difficult. Prejudice, inequality and inaccurate presumptions, though not new, were now based on my disability.

“As she steps forth to face the crowds

Some will stare, some will pass.

Captures attention as she goes

What do they really know?”

You’ve probably heard the phrase “you don’t know what you don’t know.” For example, I didn’t know I couldn’t see until I put on my first pair of eyeglasses. Prior to wearing eyeglasses, I functioned quite well because I wasn’t aware of what I couldn’t see, so as far as I was concerned there were no limitations to what I could achieve.

“She walks on by, her head held high

Opinions form in minds.

Some only see the stick she holds

What do they really know?”

Likewise, while I knew there was a significant disparity between the abled and disabled communities, I was stunned to find myself caught in the middle of two worlds. Many times I felt alienated for not being fully sighted, yet also not fully blind.

“I’m sick of people staring at your cane. It’s 2016, why do people still stare at people who use mobility devices?” my son asked me when we were on a recent outing.

“With cane in hand she proves she’s strong.

Breaking through opinions

She’s changing minds, she’s changing views

Shows them what they should know.”

I am grateful that I can’t see the gawking, however this is the reality of living with low vision in the sighted and non-sighted worlds. Sighted people can’t comprehend why a person who appears to see uses a white cane, and on the other end of the spectrum, blind people can take offense to people who aren’t totally blind being referred to as such.

Acceptance, the one thing most people yearn for, can seem especially elusive when living with a disability. However once we become confident enough to accept ourselves with our disability, we can begin to meet the world on our terms.

Abigail.
Abigail.

We are living in an era where people with disabilities are aggressively finding creative solutions to overcome the obstacles we face. Abigail, the poem by Jazmin Ruiz contained within this article was inspired by the stylish new white cane icon.

“Strength and beauty is what she holds.

Walking tall, head held high.

And there she goes achieving goals

That’s all they need to know.”

Abigail has sight loss, yet she is fabulously chic as she walks confidently with purpose, letting her white cane guide the way. The icon was designed with a two-fold mission in mind: to embolden women who are blind or have sight loss to embrace their individual greatness, and to eradicate the stigma around all kinds of visual impairments.

As a society, let’s begin a clean slate, operating from a standpoint of “we don’t know what we don’t know” to view people with an open mind. Let’s cease placing people with disabilities in a box of conformity based on what we think they can or cannot do. Once we are able to do this, we eliminate limitations.

Follow this journey on Bold Blind Beauty.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. Check out our Submit a Story page for more about our submission guidelines.

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Blind Man Files Lawsuit Against McDonald's Drive-Thru Policy

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A lawsuit against McDonald’s is alleging that the fast-food giant’s drive-thru policies violate Americans with Disabilities Act (ADA) standards, according to the Chicago Tribune.

Plantiff Scott Magee, a resident of Louisiana who is blind, visited a McDonald’s franchise on foot one night in August 2015. Finding that the restaurant’s lobby was closed for the night, Magee sought service from the drive-thru. According to his suit, attendants “refused service to him, laughed, and told him to go away.”

Magee believes this constitutes discrimination, saying in his suit that “blind people must hope for a companion with a car or paid taxi services to assist them in selecting and purchasing McDonald’s food.”

Magee and his lawyer, New Orleans-based Roberto Luis Costales, filed a class-action lawsuit against McDonald’s Thursday in Chicago’s federal court.

According to the suit, the burger chain shows no “concern whatsoever for the accessibility of the late-night drive-thrus to the disabled.”

Neither McDonald’s nor Costales, responded to The Mighty’s request for comment.

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To the Parents Whose Child Was Just Diagnosed With Blindness

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I can only imagine your feelings as you’ve been thrown into this whole new adventure of life with a visually impaired child. There will be joy, sadness, determination, frustration and triumph throughout this new journey you now face, but please remember you aren’t alone. Here are four things I want you to know as a person who is legally blind:

Lauren Berglund

1. It’s OK to feel sad, scared and uncertain of the future.

You more than likely never imagined your child would be visually impaired, and now a doctor has given you a diagnosis you may not even be able to pronounce, but everything will be OK. It’s more than OK to be scared and to feel uncertainty for what the future holds. Chances are you don’t know anyone who’s blind or has a child who’s blind, but I can promise you there are thousands of successful people who are blind all over the world. Blindness will now be a part of your life forever, and it will change your life, but for the better.

2. Reach out and find what services are available.

First of all, find an eye doctor you love, trust and who knows your child’s diagnosis. Do some research and ask around about what services are available for your child nationally and in your town and state.

Ask about early intervention services, support groups and awareness organizations. Most eye conditions have national organizations dedicated to awareness and support for a specific diagnosis. The more services you take advantage of the better. Meeting others who have your child’s eye condition and/or parents of children who have it will be one of the most rewarding, educating and supportive things you do.

3. Don’t limit your child and always let them try.

Your child is a child first and can do most everything any other child can do, with a few modifications. Your child will set their own limits as they grow and develop into an individual just like any sighted child would. Let your child grow and blossom beyond their disability and become who they want to be. If your child wants to try baseball, let them try. If your child wants to try to learn to ride a bike, let them try. If your child says they can do something on their own, let them. Your child will learn to figure out what help they’ll need and what they can and can’t do. Your child may surprise you; the sky really is the limit.

4. You will become an advocate.

Being a parent of a child with a disability means you’ll have to do quite a lot of advocating for your child until they’re able to do so for themselves. The world isn’t designed for people who are blind or visually impaired, and because of this, advocating for your child’s needs and best interests will become a part of your everyday life. Your child has certain rights pertaining to their education and may be eligible for specific services.

To receive most of these services, advocacy is needed on your child’s behalf. As your child grows and matures, he or she will begin to be able to advocate on their own needs — let them. Self-determination and advocacy skills are extremely important for your child to learn and develop. Once your child is ready, support them as they advocate for themselves until they’re able to do it on their own.

Teach your child they have a voice and can use it to advocate for what they need to succeed. (If you ever get to a point where you need legal help, there are organizations that provide services free of charge.)

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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My Response to 'But You Don't Look Blind!'

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Man in Target: “Why can you bring your dog in here?”

Me: “She is my guide dog and allowed under federal law.”

Man: “But you don’t look blind! Are you sure you just aren’t faking to bring your dog in?”

Me: “Not all disabilities are visible.”  *and walks away*

Me: *walks out of dorm room directly into a college tour*

Lady: “Oh! You can have pets?”

Me: “She’s a guide dog.”

Lady: “Wait, you’re blind?”

Me: “Yes.”

Lady: “Oh. I’m sorry, but you don’t look blind!”

Women working the order counter at a restaurant: “What side would you like with that?”

Me: “What are my options?”

Women: “They are written behind me on the menu.”

Me: “I can’t see the menu. I am blind. Could you please read them to me?”

Women: “You don’t look blind! I just assumed you were lazy.”

Teenage boy: “Why do you have that stick thing?”

Me: “I’m blind; it’s my cane.”

Boy: “But, you look normal, not blind.”

I am blind, but I will admit I don’t match society’s perception of what blind looks like, and because of this I have these conversations on an almost daily basis when in public.

Before I say anything else, please never ever tell someone they don’t look blind/sick/disabled! Ever. Many illnesses and disabilities are not visible, and when you tell someone they “don’t look blind/sick/disabled” you are not complimenting them. Just don’t do it.

As a sociology major we talk about society perception of different minority groups a lot, but rarely do we discuss what society perceives about people with disabilities. Here’s what I believe society’s perception of blind people is. Society thinks we, as blind people, are incapable of living successful lives and looking “normal.” Blind people are portrayed in media as having no eyes, deformed eyes or eyes that are always closed, and for many people this is just not the case. Society expects blind people to be incapable of doing simple mundane things such as walking and eating. It’s not “amazing and inspirational” that myself and others who are blind get up every day and participate in simple aspects of daily living. A person who is blind is just as capable of being a fully functional member of society as someone who is fully sighted.
Most people who identify as blind are not actually completely blind. The vast majority of people who are considered legally blind (A visual acuity of 20/200 or less in the better-seeing eye with best conventional correction or a visual field of 20 degrees or less.) see something. This “something” could be only light, only shadows, rough outlines or enough vision to function without the use of assistive technology. It is important to remember that someone who says they are blind may have some residual vision. If a blind person ever asks you for help, assume they have no vision and adjust the amount of assistance you provide as they tell you.

Not all people who are blind/visually impaired use assistive devices such as canes, magnifiers or guide dogs. The devices someone uses is based solely on that person and their needs. Don’t assume that since someone doesn’t use a cane or guide dog they have perfect vision. If someone says they are visually impaired and ask for your assistance, give it to them. Don’t question their need for that assistance.

The bottom line is, never judge someone’s abilities or disabilities based solely on their outward appearance.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When I Doubted My Abilities as a Legally Blind Teacher

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I am a year and a half away from graduating with my bachelor’s in special education and a minor in sociology, and it is absolutely terrifying. Once I got through my core classes like algebra, biology and physics, I was able to take only curriculum and instruction and special education classes, and get As. It was a wonderful feeling to be able to internalize and remember the things I would need to put into practice in a short time. I have been in school for 15 years, and soon I will have my own classroom.

Emily Parma, ready to teach.
Emily.

And then my entire physical being trembled with fear. Could I really teach students when I was struggling with facing my disability in the academic setting? In high school I was able to get by with barely any accommodations, and no assistive technology. Math and geography were always the hardest for me, since the nature of those classes are visual, but I got by. The teachers who tried to push me to help myself — to sit closer to the board I could not see — just made me frustrated. I refused the help and barely passed those classes. I had testing accommodations, but I pretended not to need help during activities or class presentations. Truth be told, I used my own adaptations to do the work. If I feared not being able to read a PowerPoint, I memorized it. High school flew by, and I graduated with a goal to become a teacher. At that time, I still ignored the part of my identity that needed extra help to succeed. I thought I had figured it out.

So here I am in my first block class (the part of an education major’s classes that prepares for student teaching), and I have never been so overwhelmed before. The first block is ESL (English as a second language), and we are expected to create lesson plans, present methods for teaching, observe teachers in elementary schools, and various classroom activities. Unfortunately, I grew to hate this class because my disability was in the way.

I have been forced to grasp the part of me I pretended was not there for so long. I am learning to teach and learning how to adapt to my needs. There have been many tears shed during my years here at school, because I fear I will not be able to teach. I know it is what I am meant to do, but because I never used technology in my education career before, I have to teach myself how to use adaptive technology now, like a CCTV or zoomtext on a computer.

It is exhausting. Some days I have to opt out of classroom activities because I cannot read the text, and then I have to explain why to everyone. Of course they ask if I wear glasses, so I have to further explain that I am legally blind, and my contacts or glasses only help so much. Answering people’s questions is not my main concern — it is the fact that I am expected to already know how to help myself, because I’ve been in school for so long.

In my teaching classes, we have spontaneous assignments where we are given a text and we have to present the information we find. For a student with a disability, this is the most anxiety-creating assignment a teacher can give. There is no extended time given to read the text or figure out how to present it. Put partner work on top of that, and I have to make sure I write it down so I can read it, or memorize it. By the end of the class, I am exhausted, and terrified of teaching. Some classes are like that when I do not know how to help myself.

I had to do something. Was this major really for me? I was afraid my future students would not respect me. Was there someone I could talk to? I remembered my first special education professor I had last semester, and how she said her office door was always open for students to approach her with a problem.

I found myself in her office that very week, in tears because my heart knew what I was meant to do, but my mind had doubts. It was overwhelming. But she told me she believed in me, that I was one of her best students, and she needed my head in the game. I needed to hear that. She also reminded me that if this is what God wants me to do, I must go forward. I know not everyone is religious, but everyone needs something to motivate them, and for me, it was being reminded of where I believe God has me. Then my kind professor told me she knew just who could help me. Her best friend is legally blind, and has been teaching for decades. I finally had a mentor, and it turned out we were more alike than either of us realized. It was a good feeling to find someone who can relate to my struggles and guide me in finding the most helpful technology to use when I am a teacher. Now I have one less thing to worry about.

I wish I had not been so shy about my disability in high school, because maybe then I would not be working as hard now to learn how to adapt. Reaching my breaking point in college and asking for help was the best thing I did for my future. I will always have insecurities that come and go, but now I have people in my life to talk to about them. I will forever be grateful to the professor who spoke truth to me, and to the role model who will help me be a better teacher. Thanks to them, I now know I can be an effective teacher, and I will do whatever it takes.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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