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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Thinkstock photo via TongRo Images Inc.

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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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Thinkstock image by Katerina Andronchik.


“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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June 2017 marks the 10th anniversary of Apple’s iPhone. Yes, it’s been 10 years since Steve Jobs and Apple released to the world what would become a revolution. A revolution that was limited to the sighted at launch. But with the release of the iPhone 3GS in 2009, the blind and visually impaired community rejoiced in amazement at the implementation of the new screen reader called Voiceover.

Prior to the release of Voiceover on the 3GS, blind people were relegated to using very specific models of phones for accessibility. These phones didn’t offer that accessibility right out of the box, however. By the time you purchased the phone, a screen reader and then perhaps software to scan and read print documents, a blind person would spend a minimum of $2000. At that cost, you still didn’t get a fraction of the accessibility and functionality of the iPhone.

Enter Steve Jobs and Apple…

The 10th anniversary of the iPhone has inspired me to reflect on its history and how it has affected the blind community. The iPhone has brought accessibility to social interaction, navigation, text and image recognition, gaming and so many other parts of our digital daily lives. The implementation of so many of these services and the accessibility of so many apps has truly been a game-changer.

Through personal experience, research and the help of some friends, I’ve put together the following list. A top 10 list, broken down by category, that highlights how the iPhone has impacted the lives of the blind and visually impaired.

10. Portability

Ten years ago, Steve Jobs stressed the portability of the iPhone when he explained how it was so many devices in one. To be able to carry in your pocket an iPod, phone and internet device was indeed a revolution! This wasn’t just a big deal for the mainstream, however. Unlocking the iPhone’s potential for blind people was huge. Previously you could spend thousands of dollars between multiple devices just to achieve some of what the iPhone could do.

9. Going mainstream

The advent of the iPhone and its portability achieved something else for blind people. It included us within the mainstream of society. Not only did you not have to spend thousands on multiple devices, but you could purchase a mainstream device just like anyone else and have it work right out of the box. This also means blind users have access to the same safety and security as others through the use of ApplePay. That level of inclusiveness is a wonderful and powerful feeling!

8. Gaming

Games have been developed for blind people long before the iPhone came around. From the early text-based adventures to more modern audio games, there has always been a place for games amongst the blind community. But the iPhone has taken blind gaming to the next level. You can play everything from dice games like Dice World to card games such as those made by Blindfold Games. RS Games offers board games and there are even many 3D immersive audio adventures. And so much more.

There are developers who create their games with blind people in mind, and there are others who work hard to make sure their mainstream game is accessible as possible.

7. Books and Reference

The iPhone also makes it so much easier for blind people to access reference material. Using Safari or SIRI, you have instant access to the internet to research any topic you like. Plus there are apps for accessing text or audio books like Audible and BARD Mobile. There are accessible dictionaries and language translators.

6. Social Interaction

One of the other great things the iPhone does for the blind community is bring us together socially. Of course you can use your iPhone as just that, a phone. But there is a larger world out there. You can text message or even audio/video chat. And then there are apps like Twitter, Facebook and Vorail. You can connect with family and friends and even other blind people from around the world.

5. Audio Description

Games and books aren’t the only forms of entertainment that the iPhone makes accessible to blind people. Thanks to companies like Disney, Netflix and Apple themselves, movies and TV shows are just a tap away for the blind and visually impaired. These companies and others have made a commitment to providing descriptive audio tracks that play along with a movie or TV show. These tracks allow the blind person to know about things happening visually on the screen. Due to the efforts of these companies, access to described content has never been better.

4. News

The iPhone also provides many great ways for the blind and visually impaired to stay connected to local and world events. There are many apps, including Apple’s own News app, that can keep you up to date.

3. Navigation

Orientation and mobility are crucial in the life of someone who is blind or visually impaired. The iPhone offers the standard supplements for navigation like Apple’s own Maps app. However just as crucial are the various transit apps like Moovit that offer accessible bus and subway schedules. Then there are apps specifically designed for the blind like BlindSquare. This app offers real-time GPS information about your surroundings like street names, crossings and even nearby restaurants and businesses.

2. Utilities

Recognizing objects, text and currency can be some of the most difficult obstacles to a blind person. This is where the iPhone shines brightest as a tool for the blind and visually impaired! Using the iPhone’s camera, there are a number of apps to help in identifying things. NantMobile Money Reader is an app that can identify currency from multiple countries just by holding the camera lens up to the bill. Digit-Eyes is another app that can easily scan any UPC code and tell you the contents of what you scanned. Another utility that makes great use of the camera is the KNFB Reader. This app enables you to take a picture of any printed text and then reads it back almost instantly. There are many other utilities that help the blind with object and picture recognition. These include Be My Eyes and BeSpecular. These apps offer live volunteers who either through audio or text can help to identify photos or objects.

1. Accessibility

There isn’t one item listed within this post that would exist without the built-in accessibility of the iPhone. For those with low vision, there is Zoom and Magnifier. Zoom allows you to enlarge what is on screen for better viewing and the built-in Magnifier utilizes the iPhone’s camera to work like a traditional video magnifier by enlarging objects and text seen with the camera on screen.

Apple has also included the ability to invert as well as filter colors for those who have difficulty perceiving certain colors or who have issues with glare. And what about the color blind? Apple has even included filters to help those with different forms of color blindness.

And of course, there is Voiceover. By using certain gestures on the iPhone’s screen, Voiceover provides auditory descriptions of each element. This is what allows a blind person to navigate the web, reply to text or email messages, play games and use the other ground-breaking tools talked about in this post.

I’ve spoken to many blind and visually impaired persons who are eternally grateful to Steve Jobs and the development teams at Apple for their dedication to accessibility. A dedication that enables blind individuals by giving them independence and confidence, right out of the box.

Thank you Apple, for thinking of us. For helping us to be a part of the “mainstream,” and for continuing to believe that the blind and visually impaired community is worth continuing to fight for. Happy anniversary iPhone!

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Disability advocates are criticizing the upcoming film ‘Blind’ for casting Alec Baldwin to play the role of a blind character.

The film, which is scheduled for release on July 14, follows Baldwin’s character, Bill Oakland, a novelist who loses his sight in a car crash. Oakland is later cared for by Suzanne Dutchman, played by Demi Moore, a socialite tasked with reading to him as part of a community service deal after her husband is indicted for insider trading.

“Alec Baldwin in Blind is just the latest example of treating disability as a costume,” Jay Ruderman, president of the disability rights group The Ruderman Family Foundation, said in a statement. “We no longer find it acceptable for white actors to portray black characters. Disability as a costume needs to also become universally unacceptable.”

“Blind” is far from the first movie to cast an able-bodied actor in a disabled role. Another new film, “Breathe,” stars Andrew Garfield, an able-bodied actor, as Robin Cavendish, one of the U.K.’s first disability advocates. Last year’s “Me Before You,” also starred an able-bodied actor, Sam Claflin, in the film’s leading role. 

In 2016, The Ruderman Family Foundation published a study which found that while nearly 20 percent of the country’s population lives with a disability, 95 percent of characters with disabilities are played by able-bodied actors.

While Baldwin himself is not blind, he did meet with blind men at The Lighthouse Guild, a healthcare center for the visually impaired, to prepare for the role.

Twitter users have joined Ruderman in speaking out against Baldwin’s casting in ‘Blind.’


Traveling with a guide dog means I get to hear some pretty interesting comments from the public. It also means I run into some pretty awkward and interesting situations as well. Here are seven commonly occurring comments, or situations I tend to encounter while I’m out and about that are truly annoying.

1.”I know she has her harness on and I can’t pet her, but…” *starts petting anyway*

How disrespectful can you get? This isn’t a situation where the individual is being ignorant and needs educating, this is a situation where the individual knows better and knows the rules, but chooses to disrespect them. To me, this person is saying “I know petting a guide dog while they have their harness on is a safety issue, but I don’t actually care.”

2. Parents who pull their kids away from us.

It’s common knowledge that parents as a whole don’t tend to do the greatest job at teaching their children about guide/service dogs, so naturally it’s us as the handlers who have to do that job for them. I personally love it when parents want me to explain about guide dogs to their kids. However, there’s a common reaction parents have when their kid starts petting my dog that I find somewhat troubling. When their kids start petting my dog and when I notice them, or when I try to educate them, the parents grab them and whisk them away with no explanation. It’s most likely out of fear (cause ya know, difference is just so damn scary — not) or embarrassment.

Really, don’t be embarrassed. Kids will be kids; we understand that and many handlers have children of their own too. Here’s why the above is such a pet peeve of mine, though… pulling your kid away with no explanation teaches fear and doesn’t open dialogue. My heart sinks every time this happens because not only is talking to kids one of the best parts of being a guide dog user, but a perfectly good opportunity to do some practical education to build awareness and break down the fear of difference. If you’re worried we’ll be angry — while I can’t speak for all guide dog users, most including myself wouldn’t be. With that said, remember, we don’t have to be open to doing the job you should be doing with regards to teaching your kids about guide dogs. It’s a choice that I and other guide dog users make. Take advantage of it and don’t treat us like we’re not on the same level as you are.

3. “Its OK if she sniffs me” or similar statements.

People seem to be quite bothered by the fact that as a guide dog, Izzy has certain rules that she needs to follow while out and about. Some of these rules also need to be enforced when her harness is off. A big one, while she’s on harness at least, is sniffing. Guide dogs can’t be sniffing while they are working because it distracts from their work. Not to mention that they aren’t supposed to greet a person while their harness is on, even if it’s just a little sniff. I am pretty strict with rules, and when I tell Izzy to “leave it” if she sniffs you, I mean it. If I have to give her a quick snap in the leash, I will do that too. You, as an individual who hasn’t been through the training, have no place to stick your nose in and say otherwise.

No, she’s not allowed to sniff you. I say so, her guide dog school says so and telling me otherwise promotes an all-too familiar discourse that individuals with disabilities are incompetent to make the appropriate judgements for themselves, a pet, a guide dog, or a child. Of course, when she’s off harness, she can sniff and say hello, but there are other rules that still need to be enforced. The biggest one is no eating food off the floor. Whether Izzy is on harness or off harness she is not allowed to eat food on the floor. Whether on or off harness people again tend to get pretty bothered by the fact that she receives a correction if she tries to, or does eat food off the ground. While you may think it’s fine to give your pet dog people food or an excessive amount of treats, it isn’t healthy for her. So when you say “but she’s just…” you’re disrespecting my authority and my choice to maintain a healthy guide dog.

4. Pet dogs not on leashes.

Having your pet dog off leash is extremely dangerous when not in a fenced area. It’s dangerous to your pet’s well-being and its dangerous to the well-being of service dogs too. Pet dogs that aren’t on leashes pose a serious risk of attacking or interfering with a service dog’s work.

5. Teasing my guide dog isn’t OK.

So now I’ve told you not to pet my guide dog while she’s working and explained to you why you can’t pet my guide dog while she’s working, but you’re getting in her face, making eye contact with her and doing that annoying squealing thing that people (including myself) tend to do when we see a cute animal. Relax, take a deep breath and stop. You’re not petting my dog, but you are intentionally teasing her and that’s not OK. You can comment on how cute she is, even go “aww,” but if possible, say it without getting in my dog’s face.

6. Whether my dog does something good or bad, there’s no need to stare.

Whether my dog is doing something pretty amazing like “finding” something for me, or something bad like pooping in the mall, it’s OK to be curious and look, but it isn’t OK to stand there and stare. It can be very anxietyprovoking when we’re trying to work with our dogs — to be in the process of praising them or correcting them and feel people’s eyes constantly on us.

7. Taking pictures of my guide dog without permission.

My friends with vision are constantly telling me about how people are taking pictures of my dog. Obviously being blind I have no idea this is happening. It has happened in the grocery store, the bank and restaurants among other places. I don’t really have a problem with people taking pictures of my dog, if they ask me first. Not asking permission is a total invasion of my privacy and something I don’t want happening while I’m trying to do my grocery shopping, or while I’m doing other things people usually do.

So there you have it, my top guide dog user pet peeves. I’m so fortunate to have a guide dog who is incredible at her job and loves to work as well. I hope learning more from the perspective of the person at the other end of the leash puts things into perspective. Too often the dog is seen and not the person who also makes up the team. It’s important to have respect for the dog, the handler and the guide dog team as a whole.

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Thinkstock image by Cylonphoto.

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