Student with backpack walking away from camera.

A while back, I was sitting down to write an email to the professors I’ll have when I start my Master’s program in September with regards to my accommodations as a blind student in their class. Instead, I found myself thinking about what I wish I could really say to them. So here it is:

Hello,

I’m going to be one of the many students in your Master’s classes next year and I absolutely have to write you this email. You see, I was born stamped with this tattoo called “advocate.” It’s an invisible tattoo, so you won’t be able to see it, but it plays a huge role in my life. Many other people are also born with this tattoo, and while I’m not complaining, it’s the main reason I’m writing to you. Maybe I should have written this at the beginning, told you straight out, but I’m blind.

I don’t want to have to write to you. I’m not ready for you to know, for you to make your assumptions and pre-judgments, but you need to know. A few people convinced me to write to you because they care about me and my academic success, and I care about my academic success too. So here I am putting myself out there — not because I want to, but because I need to.

I had always said during my undergraduate studies that I was going to switch to a different university, but when I got accepted to that different university — the school of my dreams — there were reasons why I couldn’t take that plunge and make the change. So it’s not a fresh start and instead, even though I’ve never had any of you as a professor yet, it’s likely you already know me, or at least have heard of me. You might have seen me in the hallways with my guide dog, or heard about me through my advocacy work on campus. Maybe you’ve even come across a blog post of mine… either way, there’s a strong possibility that you know of me, but I don’t know of you. That means you might have formed an opinion of me already (maybe you were one of the many people I’ve told off for petting my guide dog while she was on harness and working), but here’s the thing, I’ve already started to judge you too. Not in the way that is negative, but in the way that is full of anticipation and hope. I’ve read each of your areas of research online and have a few of you who I am particularly looking forward to meeting. You might be my first choice for my Masters Thesis supervisor, or committee member, or someone who I’m just interested in talking to further.

You’d never guess that I’m shy — especially if you’ve seen me around. You won’t believe it when I talk nonstop about the reading, or get into a heated academic debate about a topic I’m totally passionate about. But, I am and sending this e-mail to you is totally awkward, for me and probably for you.

So with all that aside, what accommodations do I actually need?

It really isn’t that complicated, unless you make it out to be, but I’m hoping you’re not one of those professors. Like the professor I had in third year who kept handing me printed paper I couldn’t read, for example.

Firstly, please make sure course material will be available electronically. This is so that my computer can read me the material, or I can enlarge it using my computer’s “zoom” function. Please allow the length of assignments to be measured by word count instead of page count (there’s a story behind that one, for another day).

Secondly, please make sure videos are transcribed if they aren’t in English and there are subtitles. This is because I can’t see the screen to read the subtitles on videos. Finally, if there are charts or diagrams you’re showing to the class, you’ll have to describe them for me. This is because charts and diagrams can be very visually hard to comprehend, even if I were to have them on my own computer.

Phew, I think that’s it. I hope I don’t come across as too demanding, but if I do, I’m not sorry. You need to understand that this is the way it is. These are just little things, but they mean I’ll be able to engage with the course material and learn with my peers.

I hope we’ll be able to work together and have good dialogue if there are any accommodations, or issues with accommodations that need to be addressed. Please don’t be “that professor.”

Don’t hesitate to contact me with any questions, or concerns — I promise I don’t bite.

I am truly looking forward to meeting you in September, along with the rest of my peers.

Sincerely,

A future Master’s student who doesn’t really want to be known just yet

This article originally appeared on Behind the Eyes of a Writer.

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Thinkstock photo by Seb Ra.

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It seems like everyone around me has been extremely excited for the solar eclipse. There have been lines that spanned across parking lots to get the special glasses, a few of my friends have made T-shirts, and a lot of local museums and libraries are holding special events for visitors. So, how can someone with low vision or blindness be included in the event?

Luckily, there are people who thought ahead about accessibility. The Eclipse Soundscapes Project, which is affiliated with Smithsonian Astrophysical Observatory and NASA’s Heliophysics Education Consortium, has developed a multi-sensory experience for people who have low vision, blindness, or simply don’t want to look at the sun. It also would be a great addition for sighted people who are watching the eclipse! Below, I am outlining the different ways to experience the eclipse with information I found on their website here.

How to access

There is an iOS application available for free download in the app store, which can be found here. It is available for iPad, iPhone and iPod Touch. There is also an Android version available for free download, which can be found here.

Descriptive audio

The eclipse will be narrated live by the National Center for Accessible Media from within the app. However, if users want to listen to the audio, VoiceOver must be disabled, as otherwise it will result in competing audio. If desired, users can have their VoiceOver read the descriptive text from within the app.

Location services

The app will pinpoint the user’s location to determine what the eclipse looks like from where they are. Location services will need to be enabled in device settings.

Rumble map

To show the physical qualities of the eclipse, there will be a tactile map for users with low vision, called the rumble map. As users move their fingers around the screen, the speakers and screen vibrate to show the brightness of the different sections. The vibration increases depending on the brightness of the areas. The map will work best with the speakers turned all the way up, and no headphones.

Soundscapes

While this won’t be available until after the eclipse, there will also be a recording of the sounds of the eclipse, showing audio fluctuations and other phenomenon. Users can even record sounds from their surroundings and submit them through the app to be included.

While I won’t be looking at the sky like the rest of my family, I look forward to enjoying the eclipse using this application and will be posting a review of it after the eclipse. I’m so happy people with blindness and low vision are able to be included in such an incredible experience!

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It’s 10:00 a.m. and I’m about to head out the door to meet up with a friend at my alma mater to go downtown for coffee at a quaint café known as Hyperion. I begin to take out my folding cane and walk down the concrete sidewalk, which is marked by clumps of grass and weeds (predominantly the latter) and inconsistencies in height. I swing my cane back and forth as I listen to the roar of traffic next to me and come up to the first intersection and the rolling tip of my cane caressing the sidewalk with each swing of my wrist, hoping that whatever driver might be there is a kind soul. I stop and listen; thankfully there’s no one there and I can cross safely.

Depending on who you ask, going out like this can be a potentially deadly flirtation with Death, but I’m unfazed by such anxieties and presumptions. I’m legally blind and have been since birth. I was born with retinopathy of prematurity (ROP) due to being born three months premature. I was also recently diagnosed with retinitis pigmentosa (RP), which will most likely lead to eventual total blindness. At the moment, I’m “just” legally blind with a 15˚ visual field in my right eye and 10˚ in my left. My overall visual acuity is 20/200 in both eyes. Both of these criteria meet the legal definition of blindness, which stipulates a visual acuity of 20/200 and/or the widest degree of vision being 20˚ or less in the better eye.

This will be the first time my friend and I have met in person. We met via Facebook and FaceTimed and texted back and forth fairly frequently over the preceding summer. I’m the first blind person she’s ever met, and she made it clear she has a ton of questions. The first time we talked on FaceTime, I got this concerned look followed by, “Hey, so this is kinda awkward for me, but is it OK if I ask questions about your blindness?”

I smiled warmly and replied, “Sure, that’s totally fine!”

“Oh, thank God,” she said, “I was afraid you’d think I was an asshole. When do things start getting blurry for you?”

I paused momentarily and thought about my vision, “Um… you know when you’re sitting at a stoplight and there’s a car in front of you? I can read the license plate until the car starts moving. Does that help at all? Oh, and I have pretty much no vision off to my sides.”

“That actually helps a lot! Thank you! Is it OK if I have, like, a trillion questions?” she asked.

“I actually appreciate it when people ask me questions rather than making assumptions,” I replied.

I arrive at the university and make my way to my friend’s dorm. I take out my phone and quickly send her a text letting her know I’m here. A few moments later she emerges and runs up to hug me. We then began the walk to Hyperion where we’ll spend the next few hours drinking ungodly hot chi tea lattes and talking about a myriad of topics ranging from school to psychology (both of us have anxiety).

She nervously grips her latte and asks me another question, “What are some of the most ignorant things people have done or said because of you being blind? Is it all right to ask that or am I being a jerk?”

I laughed a little as I thought of all the naïveté I’ve encountered over the years, “Well, yes, that’s fine of you to ask. Ask whatever you want. Um… when I was at school the students working at the post office tried to use ASL on me when I told them I needed help getting to my mail.”

“What? Are people really that ignorant?” she asked, shocked.

“Sadly, yes, but I think most people are decent,” I responded.

“What’s the worst you’ve dealt with?” she inquired.

“If we’re talking about people being purely naïve, I’d have to say one of my high school math teachers. She flat out banned me from using visual aides and assisted that I was ‘too young to have so many doctor appointments and bad vision,’ so I must have been faking it all,” I stated.

“How… like, I’m becoming a teacher and I can’t understand someone being that foolish!”

“Now, if we’re going to talk about someone being an asshole, the award goes to my step-aunt,” I said.

“Oh God,” she replied, bracing herself for the absolute worst.

“So as you know, I just finished my Master’s degree in psychology and working towards my doctorate so I can become a clinical psychologist and eventually a board certified clinical sexologist,” I began.

“Right…”

“My step-aunt is a nice lady, don’t get me wrong, but she’s ignorant. She once asked me what my career choice was after I finished high school. I told her my plans and her reply was, ‘Don’t you think that’s a bit ambitious for someone like you? Cripples don’t become doctors. You need to shoot for something more realistic and in line with your intelligence, like washing dishes.’ I haven’t talked to her since,” I said.

There was dead silence for a good 30 seconds. “I… I… can’t wrap my head around that! How can anyone be so cruel?”

“That’s a wonderful question,” I said. Not too long after, we wrapped up and started our walk back to campus so we could say our goodbyes and I could walk home, where a Xanadu-like environment awaited me.

If I had the opportunity to stand up on a soapbox before society and educate people about blindness, there are a myriad of things I would say. However, above all else I would want people to know that blind people are capable of accomplishing nearly anything they set their mind to. There are blind medical doctors, psychologists, and lawyers. Blind people aren’t as limited as society seems to “dictate,” and we’re capable of achieving our goals and dreams; we simply need to do things a bit differently to reach our end goals and live our lives to the fullest extent possible.

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I have been living with chronic illness and a visual impairment since I was a baby. I was born with something called congenital toxoplasmosis, which is a parasite that you can catch from raw meat or cats. It’s a condition that can affect the eyes, brain and liver. In my case it damaged my eyes and brain, causing legal blindness and hydrocephalus. I have struggled a lot over the years because I don’t fit textbook symptoms so sometimes doctors don’t believe me or have very little knowledge. I have had a fair share of doctors who don’t believe me because I don’t exactly fit into one box, so to speak, and it’s hard to find doctors who have the ability to think outside the box and try treatments they might not think of otherwise.

 

Sometimes living outside the box is cool because I am able to prove that everyone is unique and it causes doctors to have to be more creative and open-minded about different treatment options. I also get to prove that I am fully capable and have a very good understanding of my conditions. I have taken it upon myself to really understand all types of medications and how they can be used for more than one thing.

The downside is I have been mistreated by professionals who aren’t willing to listen and take the time to get the whole picture of what’s going on. I have had doctors label me as having a conversion disorder because my scans are always normal regardless of my symptoms. Being legally blind does not help because it is really hard to explain what I can and can’t do. I have had to prove myself a lot to people to get them to understand how independent and capable I am.

Using humor is one of the best ways to deal with these kinds of situations because it makes people more at ease and less worried about how to interact with others. I know this is just how it’s going to be the rest of my life because of the fact that so few people understand how my body responds to things and how I get through day-to-day life.

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Music is an important form of self-expression, particularly for students who are blind. Though I’m classically trained, the fact I loved to sing depressing Italian arias during a time in my life when I was feeling so much loss is not a coincidence. Music gave me a way to comprehend and express what I was going through. Technical training gave me access to analytic skills, team work, self-reliance, advocacy and more. The very same ethics are being learned at Lavelle School for the Blind.

Lavelle is one of two schools for the blind within New York City. Together, they serve the population of blind children who are residents. Lavelle accepts students with cognitive and complex disabilities who also need services for blindness. This need for intertwined services has led Lavelle to invent a curriculum to support the unique needs of its students.

Part of that program is the inclusion of music classes. Eric Nilson is the current
instructor teaching this often-overlooked piece of education. Through music and
music groups, students are learning real-world skills such as social skills, analytics, self-expression, and a taste of success. “I like to prepare students for tasks by having tasks that are doable so they can succeed and enjoy doing it.” Nilson said of his program. “I teach them how to take the pressure off. We’re all here to help each other out.”

Since Nilson joined the education team at Lavelle, there has been a yearly Talent Show to allow students to showcase a year’s worth of vigorous work. This year’s performance included standup comedy, solo musical performances, group music performances, and even yoga and ballroom dance demonstrations. The goal of such a showcase is to provide an opportunity for students to go through the process of preparing for a performance in front of the entire school community. There is no litmus test to perform, no standard, simply a student’s willingness to prepare and present themselves on stage.

This means all the students’ needs must be accommodated. To ensure that each student who wants to participate can, there need to be a host of professionals on hand, and group performances accommodate for the verbal and non-verbal students alike. In a singing group, this is important because not all students will be able to express themselves through their voice. For these students, finding instruments for them to play, or using their own body as the instrument, ensures they can be fully engaged.

Nilson uses a variety of techniques to work with his students. Pulling from his time as a speech language teacher and a general music teacher, Nilson created a program that fit his students. It was a challenging task, because many of the students are in the middle of working on their social skills, which can make group work difficult both in and outside the classroom.

Nilson has found that his music classes help students develop these crucial skills. “In order to perform as a group, you have to support each other and there is no room for put-downs. That’s my number one classroom rule.” Nilson said of his teaching style, “It has helped kids start to have empathy for others. Help students put themselves in the place of someone else, be aware of what they say and how they say it.”

Lavelle students take on challenging and achievable music goals, and work their way up. They learn to self soothe, and manage their own difficulty in self-expression through music. This program, in turn, assists the rest of the school’s goals — to help students reach their fullest potential in blindness skills, living skills, advocacy, communication, and other areas. It does this by providing a supportive atmosphere where students can be themselves, and use alternative forms of communication. This, in tandem with the existing arts program, is the necessary ingredient for Lavelle students to achieve whatever their individualized goals are — both academically and socially.

None of this would be possible if Nilson had not taken a unique approach in educating his pupils. Whereas so many mainstream classrooms expect children to mold to the curriculum, Nilson allows his students to thrive in ways that are more natural for them. Though some of Lavelle’s students have gone on to support themselves as part-time musicians from music instruction, Nilson’s goal isn’t to shape his students into musicians. The purpose is to give an empowering platform for a group of children who are so often labeled as “unsuccessful” for not achieving the conventional definition of success.

Lavelle is also a tremendous example of what music has the power to do within the disability community. Though I’m now best known for my activism surrounding STEM inclusion, my music training is what initially helped me build confidence in myself. Not all students are destined to work in a robotics lab, but I believe all students are fully capable of reaching their highest potential if they are given the right tool set. Music is a key component in their tool belt. Without it, I believe students would not be nearly as successful. It is my hope that as we strive toward a higher tech society, we don’t forget about the importance of fundamental arts programs that have spurred creativity for thousands of years.

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“It’s about walking boldly with confidence, transcending barriers and changing the way we perceive blindness.” — Stephanae McCoy

When I lost my eyesight as a mildly seasoned professional, I quickly learned thriving within the sighted world meant overcoming seemingly insurmountable obstacles. The most significant hurdles are the misconceptions around sight loss, blindness, and the capabilities of blind people.

Transitioning into an unknown major life-altering event is a process that can be scary and overwhelming at times. However, after the acceptance of, and acclimation to sight loss, for the most part we remain the same. Personal adjustment to blindness training enables those new to blindness to learn new ways of accomplishing tasks.

Following is a list of common misconceptions and brief explanations:

1. Blindness means a complete lack of sight, total darkness. False.

The majority of people who are considered blind have some functional vision. This could range from a little light perception, shapes or shadows, lack of peripheral or central vision, cloudy, obstructed vision, etc.

2. Legal blindness is when a person can’t see after taking off corrective lenses. False.

Legal blindness is a specific measurement required for an affected individual to receive government benefits. Legal blindness does not define or describe functional vision. When a person is legally blind their functional vision affects day-to-day living and cannot be corrected by lenses, medicine or surgery. There are legally blind people who, for personal reasons, do not use mobility aids or self identify. This is their right and requires no explanation.

3. People who use white canes or guide dogs are totally blind. False.

As indicated in points one and two, there is a vast range of sight loss, and it differs from person to person. Many people who are legally blind and use mobility aids may in fact “appear” to see. These individuals need these devices to navigate safely and independently.

4. There is a distinct differentiation between blind and sighted people. False

Many people who are blind do not “appear” so for a number of reasons. Many people who are blind carry themselves confidently and are well put together. Many people who are blind are highly skilled in a number of areas including, law, health care, technology, art, science, sports, politics, teaching, etc.

5. Blind people cannot read text or use devices like smart phones and tablets. False.

Keeping in mind the vast range of sight loss — this includes people who are totally blind — many of us are adept at using technical devices and could in fact, depending on our personal situation, read text.

While the above list is not all inclusive, most of us, at one time or another, have encountered situations where our lack of eyesight is questioned. If there were one takeaway I would want people to understand it would be this: when coming across anyone who has a mobility device or self-identifies as having a “hidden disability,” take it at face value. Many times things are not as they might appear, and just because we may not understand the situation does not change the fact that everyone — even people with disabilities — are entitled to be treated with dignity and respect.

Stephanae McCoy, is a businesswoman, style setter, blogger, abilities crusader and founder of www.boldblindbeauty.com a successful website that makes a connection between the sighted and non-sighted worlds eradicating misconceptions and long-held stereotypes about people with vision loss. Ms. McCoy can be contacted at [email protected]

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