“BRAD: When you’re young with Stargardt’s disease, you still have a lot of functional vision. You don’t really realize there are things you’re not seeing.
One of the first moments of struggling was in first grade. My mum had told me that if I couldn’t see something on the board, I could walk up to the board to see it.
I took that as anything else she sort of told me to do, but then I remember in class having to get up out of my desk to go a foot from the chalkboard to read what the teacher had written on it, and not seeing anybody else in the class getting up to do that. It definitely hit me then – something was different.
That’s definitely the first time that I remember feeling different
BRYAN: My personal struggle is I very rarely recognize somebody after meeting them for the first time. Because of my vision, you could be anybody from my mum to the Pope, and I wouldn’t quite know.
Thankfully, a lot of people are very understanding. It’s one of those things that if you know somebody’s low vision, it is beyond helpful to just say, “Hey, it’s John.” If you give me the name, I can actually place where we had a conversation. But recognizing the face is always a little bit tough.”
“BRAD: Bryan and I were both in New York working in separate careers. One day, we walked into a Bloomingdale’s, and we happened to buy the same exact shirt.
Part of the reason for that, other than a coincidence, is we lost each other in the store. If you’re blind or you’re vision impaired, touch is so important to you. So we just happened to feel the same, exact shirt that felt extremely soft. And so we bought it. And when we walked out, we had the same shirt. It was kind of funny. Of course, one of us had to return it.
Later that day, we were talking about how there is this vigilance of touch, and we decided it might be fun to create a small side project focused on making some soft clothes and giving those profits to the research [of vision loss].
So it started as sort of this fun side project, and then after we started to get a lot of attention on social media and through some of the news sources and the endorsements from Richard Branson and Ellen Degeneres, we sort of realized that we had to go at this full time to take advantage of this rare opportunity.”
“BRYAN: We were both diagnosed with Stargardt’s at the age of seven. Brad is five years older than I am. So he was diagnosed at seven, and then I was diagnosed also a couple years later when I turned seven.
It’s interesting, though, at that age, you actually don’t have too solid of a frame of reference of what it actually means, and so you have to take the majority of your cues and you have to follow the guidance of your parents. They were always very supportive of us and always pushed us to try despite our visual impairment and never really allow it to be an excuse in our lives.
It had to be something that we had to overcome, which we’re still amazingly grateful for because it put us on a path that’s allowed us to experience so much and allowed us to try so much and not be too worried about failure or how visual impairment is going to impact any activity we do.
BRAD: I think one of the very tough things about these retinal eye diseases is when you’re diagnosed, it’s very confusing. You don’t know what to expect. You don’t know how to feel about it.
And so obviously, when we were young like Bryan mentioned, we took our cues from our parents. But I think growing up, we were each other’s kind of source of feedback. And we sort of played off of each other’s experience, and it wasn’t until we were older that we had a full appreciation that our experience was not necessarily everybody else’s.”
“This may be silly, but [when it comes to technology and websites] many times I have difficulty finding the mouse curser. I alleviate this issue by moving the curser to the farthest top right corner of the screen until I find it again. In addition, the brightness level of the screen can really take a toll on my eyes. I often lower the contrast and brightness levels of the computer monitor so I can function.
The worst thing about DeafBlind is when people underestimate your ability to do what they can do. They assume since I am DeafBlind that I shouldn’t be part of this complex and vision ruled sport. Finding someone that is willing to have the patience to work with me since there’s a communication barrier can be challenging.
The best thing about being DeafBlind, however, is that I can build a stronger bond with people doing AcroYoga through a heightened sense of touch. This allows us them to feel more gratitude for their other senses.” – Tanya
“Everyone is raving all about technology that enables Siri, Alexa, and such. I think that’s amazing. However, I am concerned we would go back to the “dark ages” where everything were purely radio frequencies. Google Home cannot even understand my incredibly and sexy accent. Instead, I often have to disable it and tell it to bring back the text for me to read.
The best thing about being DeafBlind is that we don’t really care about prejudices, bigotry, racism, and whatever else out there. We just don’t have time for that… literally! We accept each other for who we are as individuals. The worst thing about being DeafBlind is sometimes we have too much time to ourselves and that can become boring and lonely. It is not so simple to get in a car and buy milk. You have to plan for transportation, figure out your communication, possibly request for accommodations, and so forth. It can be time-consuming.” – Andrew
“We’re able to socialize and communicate with people just like the rest of the world. The only difference is that we have a different language and other ways of communicating with each other. It’s an easy language to learn that requires patience and understanding. We have passion and we want people to know that we’re not going to live isolated and silent lives. We can do anything our hearts desire and we are capable of much more.
Being DeafBlind we have balance problems due to our inner ear equilibrium issues. In addition to this most instructors use verbal cues when teaching you the next steps of the progression instead of comprehending that I have a disability and accommodating me to help me learn the next progressions. I have gone to workshops where I have asked instructors to use microphone system that wraps around their arm which connects wirelessly to my hearing aids, so I can hear their instruction, however many instructors are not so kind when asking them to put it on. The easiest part is understanding your body movement and predicting the next progression because it simply feels right. Connecting and applying perfect balance allows you to move gracefully without even thinking about what happens next.” – Tanya
“We all live in a world that seems to crave more and more for instant gratifications. Time is essentially an DeafBlind individual’s biggest barrier. I have read that 80% of the information out there are delivered via the eyes and ears. Boy, that is a lot of information! Certainly, we need more time to process all of those information!
Ironically enough, I would say the easiest and hardest part [of doing acroyoga] is interchangeable. DeafBlind people are extremely tuned in with their own bodies. They can detect a slight change in the air or gravity. Yeah, I am saying we are mutants! Step aside, X-Men! Anyhow… when I am being the base supporting a flyer, I can certainly detect whether the fulcrum feels good or not. I can adjust to the flyer or the flyer can adjust to me. Of course, like Tanya said, we generally have horrible balance. So if the fulcrum is off just too much, just run for your lives!” – Andrew
“Being that my vision allows me to only have 10 degrees worth of a field of view, whereas most people can see about 180 degrees, I have had to develop a new way of communicating with my base [when doing AcroYoga]. I found that by using my main sense of touch I am able to communicate what I want done next by squeezing their hands, using my toes to touch where I want to be placed and even simply by applying more weight on one side of the body. I can really focus and feel my bases body movement as well and understand/interpret what move he/she is asking of my body to be performed next. Talk about true, deep, understanding. This I can relate to first hand being that I’m partially blind and almost completely deaf. All my life I have had to get around primarily by using cues and body language. Unlike most who can easily listen and speak to communicate.
AcroYoga is an important part of my life for reasons that most people never really have to deal with. Communication and understanding, which can be done entirely without speaking. It’s like having your own language with another person that can be expressed and interpreted all without speaking a word. Since this sport plays to my strengths of touch without sight, I have decided to teach and share with others my passion and how easily they can accomplish this too with the right instruction.” – Tanya
“Precisely! DeafBlind people comes with a huge and varying range of hearing loss and vision loss. Some even speak a different language whether it is spoken or signed. However, when it comes to DeafBlind AcroYoga, the disabilities and the barriers virtually disappear. The power of touch literally TOUCH us all and I think that’s what makes DeafBlind AcroYoga so fascinating!
Tanya, out of the blue, contacted us at DeafBlind Camp of Texas and proposed a fundraising event. We immediately agreed. At first, we thought it was going to be some kind of fancy Yoga where we would have our volunteers Support Service Providers (SSPs) work with the DeafBlind individuals whether it be facilitating the information or guiding their movements. Boy, we were completely wrong. Haha! It all worked out though. The DeafBlind individuals would feel and follow the instructors’ movements first before trying it on each other. It worked out beautifully. So much that the AcroYoga community is becoming an extended family for us all.” – Andrew
“After Deaf Can! Coffee opened, people started hearing about it and coming. They were very curious, especially about the name, Deaf Can. They’d ask, “What does that mean?”
“TASHI: I was born into a Deaf family. My parents believe that I was born hearing, and then, as an infant at nine months old, I got sick. They thought that that impacted my hearing.
But I really feel like I’ve been Deaf my whole life. I don’t have any recollection of anything other than that.
I had communication access from the beginning. My parents signed, my family signed. I’ve been Deaf my whole life. And 30 years later, I’m still Deaf and happy about it.
People see somebody who can’t hear. And that leads to a negative premise on which everything else builds on.
I wish that hearing people would look at the personhood, our being, first, instead of looking at what’s different about us. Don’t look at us as a disabled person. Don’t look at us as hearing impaired.
Look at us as a person. See that we are a person. See what we can do. Ask us what our interests are, and get to know the person first before you make any assumptions about who they are and what they can or can’t do.
I would love to see hearing people desire to learn more about our language, learn more about our culture, our deaf identity, and realize that we, as Deaf people, can work right alongside and with you.
There are so many stereotypes that are placed around Deaf people. So that’s what I wish people would change.”
“Deaf Can! Coffee really started way before we had the business part of it. I grew up in the rural countryside of St Elizabeth, where as a Deaf person myself I always had strong role models in the Deaf community. One role model was Everlin Clarke, a coffee farmer. He never went to school, was never educated, was illiterate. But he had sign language and had self-confidence.
He was very skilled, and he was a great example to other people that deaf people can do anything. He had his own small coffee businesses, his own home, family, everything.
Our boys from the school here in Kingston were struggling with self-doubt. They were struggling with self-esteem issues, often saying, “I’m deaf. I can’t do that. I can’t succeed in the world, it’s too hard.”
We really wanted to encourage them to believe that they could. So my husband and I, Blake and I, talked about it. We decided to take them out to the countryside to meet Clark.
The boys were so inspired by him.
They started thinking about roasting coffee too. They practiced with a Mr. Coffee machine that was an old, cheap machine, but they started playing around with it just for fun. Then they said, “Why don’t we set up a small coffee shop near the school to sell people our coffee drink?”
It was just kind of fun to do it on campus. But then Blake and I thought, “Oh, that might actually be a good training program.” So we started thinking about formalizing it. We applied for a grant to build it out a little bit more and got the grant through a local foundation here.
The program then changed to be about the students here.
We wanted the message to the world to show that deaf people can do anything. And so we came up with the name to be Deaf Can! Coffee.
So that’s where it all started.”
“In the Deaf world and the hearing world– you have these two separate things– technology helps living in the hearing world a ton. My phone, for example, has dictation that I can click on. You could speak, and it pops up with bold sentences. I can put it in use for communicating with hearing people. If I take my dog to the vet, I have my phone dictate what the doctor is saying. The dictation of the doctor’s instruction can be saved in the data. That alone has helped me have access into the hearing world.
In the Deaf world, technology has also made an impact. I’ve noticed that socializing, like human contact, has kind of been removed by technology. In the past, especially at Gallaudet and any Deaf clubhouse, the Deaf would come together and hang out. There wouldn’t be texting going on or anything like that. Every week, or every month, there were different events. But then since technology has increased, people just communicate more through text messaging. There’s still positives and negatives to technology. But the biggest positive is that look, I can communicate with you through the VRS services, for this interview.
As for captions, I try to avoid watching movies that do not include captions. Actually, I refuse to watch a movie without captions. I refuse to do it at all. It’s cringing frustrating when you go to the movie theater to watch a movie, and you have to deal with the glasses or the one where you had to adjust into your cupholder, hoping no one bumps into it. There are a number of different kinds of devices in theaters. The worst one is the rear window captioning. It’s a reflective glass where you read the caption. The captions come from an LED display monitor in the back of the theater. Even with the modern glass I struggled with how I line up the captions through the glasses on the screen. I get really disappointed whenever the glass skips a line or you miss a joke. (I can see the audience laughing.)
You miss out on a lot of the information. It’s agonizing for our movie experiences as Deaf people. When I come to a theater expecting captioning and there are no captions al all, then I get nauseated. It ruins the movie-going experience too, especially when there’s a glitch in the captioning device. It’s awful when the captions are delayed – I get behind with the story. Live captioning shares a similar problem, especially when watching the news. Those issues are challenging us to fix it.”
“When I was a kid I loved picture books – any kind of picture books. I’m a visual person, not a linguistics person.
I had to grow up with SEE. I’m pretty good with English. But still, I still struggle with expressing English. ASL is a visual-dependence language– I get engrossed in it. When you asked me for an interview, the method was either using a videophone or email. I chose the videophone. If I chose using the email to respond, then I’d have a harder time answering your questions. ASL gave me that confidence to express myself. That’s the best thing about being Deaf.
A few years ago, I started a new hobby of board games. Over the years, I noticed socializing/playing with hearing people using a board game made communication easier. Since we all know the rules to play the games, we didn’t have to face the language barrier. All board games have set rules that we followed. It was easy to teach them the sign language through the board game rulebook. This is a great way to share and expose ASL to anyone who wants to learn/play.
Combining ASL and the board games, the communication went smoothly because of how we use visual cues. I embolden hearing people to develop connections with the deaf people and vice versa. Any kind of socializing through a game– I highly encourage that. I apply this method of gaming and signing a lot in my classroom now. It benefits the students while making it fun.
ASL is what I truly identify with my culture. This language is beautiful and robust. I feel capable and committed to ASL.”
“I grew up, identifying myself as a big D, capital D – Deaf. I emphasize that because of the culture of my deafness. But I wasn’t really sure if I was hard of hearing or not. I had a lot of friends who signed, but all of them signed English, called S-E-E, SEE. So I was kind of stuck. But I didn’t meet a lot of deaf people out in the community.
Then when I entered high school, I started to meet different people, and in college too. That’s when my bubble burst. Oh, man, did I really get engrossed in everything! I still struggled with my identity during that time. I went to Gallaudet, and I also had my own little culture from growing up. And I had to assess myself.
Then I felt like I was really a Deaf person very strongly. So I really got motivated to match with the ASL. And that’s when I became and started to identify with the big D capital Deaf.”
“There are so many crazy myths [about Deaf people] out there. I think my top ‘favorite’ one is, ‘All Deaf people can lip-read.’
I remember when I first was asked if all Deaf people could do that and I was like, ‘Uhmm… Can you even lip-read? Oh, you can’t? Because it’s hard right?’
I think it’s funny how easy some people think lip reading is until they’ve actually tried it themselves. Then after they’ve tried it they are like, ‘Oh wow, this is WAY harder than I thought.’”
“I am the first Deaf person in my family. When I was in the first grade my parents found out that I had a hearing loss. But we have no idea what might have caused it. It was just something that sort of happened.
It’s hard to remember exactly how much sound I could/couldn’t hear back then. But from what I know, when I was younger, I had a mild hearing loss. Then over time, my hearing just kept dropping. Now I have a severe/profound-ish hearing loss.
I grew up being the only Deaf person I really knew so I didn’t have any Deaf/HoH role models around me to relate to. Because of that, for years I felt very hopeless, alone, and isolated. I didn’t have anyone to connect with as a deaf person.
So whenever I get comments/messages from other Deaf/HoH people telling me they can relate to my content… It’s hands down one of the best feelings in the world.”
“I adapted, but I didn’t know what was going on. And it took a couple of years before I was diagnosed with what was going on. But I struggled.
I’m adapted to blindness. It’s not my greatest struggle.
I’ve been totally blind for about 30 years, and the hardest thing for me to overcome is the assumptions of sighted people. Not blindness itself, but the assumptions of sighted people. Their preconceptions, their prejudice of what it’s like to be blind.
The blind label encumbers a whole bunch of, like you say, spectrum of blindness. I’m totally blind, and so when I function, people think I’m mysterious or magical or, how do you do that? But it’s a slippery slope. When you don’t function, people think that you can’t function at all, and actually, people start talking to you louder, as if you can’t hear or grabbing hold of you as if you can’t walk.
This is the best time in history to be a blind person. Technology, the adaptive aids and equipment, that dogs are, by law, supposed to be available and you can take them anywhere. We live in a very good time for blind people.”
“I’m trained as a sculptor. I have degrees in industrial design. But then I started to go blind, and it would make more sense for me to be a sculptor. I know how to cast and foundry work and all that stuff.
Retinitis pigmentosa is an umbrella term for a number of maladies that begin taking your vision from the outside of the retina and work their way in, building a pigment– pigmentosa pigment. And eventually, it comes in and it clouds over the macula. So it closes off vision, similar to a camera dilating down.
I was a contractor. I was building residential buildings, and I was doing sculpture.
But blind people don’t have much money, and so I live in a tiny cottage with a tiny studio in a tiny plot of land. And I was doing huge sculptures.
One or two of my sculptures could inundate or just completely cover the land that I own. And so I needed something smaller, and so going back to ideas and producing photos, you can have massive amounts of information, in digital or negatives. So they’re easier to store and easier to produce. It’s more in tune with the modern world.”
“If you also have a visual impairment, know that learning how to advocate for yourself is the most important key to achieving your goals. There will be more obstacles to figure out, but if you are persistent and unafraid of the label of being “visually impaired”, you can show others what you are capable of achieving.
To those who are not disabled, never assume what a disabled person’s limits are.
Also, the whole ‘you are an inspiration’ speech gets old after a while. We are normal people who happen to live our lives with some slight adaptation. Persons with disabilities are well capable of advocating for ourselves.
If you would like to be helpful, ask to offer assistance, don’t immediately take over what we are doing. And in my personal opinion, questions are how you learn! When the appropriate time comes to ask questions regarding accommodations and accessibility don’t hold back!”
“I was first introduced to the YouTube community through music. I followed pianists like Kyle Landry and Sherry Kim and they were my inspiration for playing.
It wasn’t until I started contemplating my sexual orientation that I discovered the vlogging community and coming out videos. I wanted that same sense of community and resource to those living with disabilities.
So I started talking about my experiences living with albinism and low vision.
I’m almost positive that when people hear the phrase ‘visual impairment’ they think of someone who cannot see completely.
A majority of the blind community are people with low vision. We can still see a little, or most of the detail of what we’re looking at, it just depends on environmental conditions. I am visually impaired, but I am also a painter, and I coach soccer.”
“I was born with albinism, which is what caused my visual impairment. I grew up having to learn how to navigate the world with low vision, while also being aware that my skin color was different from the rest of my biological family.
Growing up in an indigenous community was hard. Not only was my low vision a challenge, but it was also hard to accept my skin color. Being taught about the history of Indigenous communities with white Europeans, made me struggle with accepting the color of my own skin.”
“I’m really lucky and happy to be able to meet the people within the hearing loss community. They are all from different kinds of backgrounds and varying degrees of hearing loss, some people have come to terms with their hearing loss. Some people haven’t. Some people try to hide it. Some people are very expressive with it.”
“I was born and raised in a more oral method of instruction for the deaf where they teach you to speak and understand lip-reading. My father didn’t actually permit me to sign. And that was the 1970s or so. My mom did sign a little bit, mainly just home signs (invented gestures), but my father required me to speak when he was around.”
What is the best thing about being deaf?
“I hear screaming/crying babies less. Unfortunately, sometimes, I can still hear them depending on how close they are, but for the most part, the sound is less for me than it would be a hearing person. Sorry, babies. I understand why you cry, but it hurts.”
“My parents are both deaf, and ASL was my first language. English is actually a second language for me.
In our family we had a footstool that would sit by the TV, and that was the interpreter’s footstool because we didn’t have closed captioning back then. Growing up there was the Vietnam War, and that [was] the first war that was really televised. So I would sit on the footstool next to the TV and interpret the news and update Mom and Dad.”
Want to read more stories, and keep up-to-date with Faces Behind the Screen?
Inspired by the popular photo-interview project Humans of New York, we launched FBTS at the beginning of 2017 to spread awareness about web accessibility. Through photos and interviews, we have been able to share many unique stories that give everyday people a face, a voice, and an opportunity to share their story and perspective.
Our aim is to simply connect the world with these stories, offer a new perspective, hopefully, shatter common stigmas and preconceived notions, and remind everyone that the world wide web, including websites, apps, and other digital interfaces, needs to be accessible for everyone – including people with disabilities.