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Hear Me. See Me. Know Me

28 minutes

(female) My name is Brittany Winkleman. I am a senior in high school. I enjoy drawing, photography, horseback riding, social media, and hanging with friends and family. By hearing those things, you probably think I am just a normal, shy teenager.

But I am different. I am deaf-blind. If you'd asked two years ago, I'd say she was quiet and shy-- very not outspoken. But now that I've known her longer,

she's sassy! [giggles]

(Brittany) People would say I was born this way, but no one knew for sure at the time. I can say for sure it's the only way I ever remember being. My parents found out I was blind when I was two. A few months later, they found out I could not hear either. So why in the world, as someone who describes herself as shy, would I make a video all about me. The easiest answer is I want to show what it's like to be me. I learned I was deaf-blind at two, but now I'm eighteen, a legal adult and a week from my high school graduation. So what is it like being deaf? For me, the hearing on my right side is dead, at least that's the way doctors like to describe it. The only thing I can hear from my right ear is extremely loud noises that are right next to me, like an air horn. I use a hearing aid in my left ear. I've been working with Miss Kate since first grade. Brittany has a profound hearing loss in her right ear and a severe to profound hearing loss in the left ear. Her right ear doesn't function well enough to use a hearing aid. There's no useable hearing there that can be amplified. She's unable to benefit from a hearing aid.

(Brittany) My left ear can hear, but not really well unless I have a powerful hearing aid. Her left ear has had hearing loss progress over time. Started as a high-frequency hearing loss and has progressed. Now she has about 10 to 15 decibels of hearing she uses.

(Brittany) Now that you have a better technical understanding of my hearing, I want you to hear what it's like for me to hear.

(both) This is what the average person hears. This is what Brittany hears. With a profound hearing loss, there's damage of the cochlea's inner hair cells, or the inner ear structure. It's kind of a little snail shell organ for hearing that also works along with the semicircular canals, which are necessary for balance. With profound hearing loss, the hair cells in the cochlea are no longer functioning. Kind of like grass that waves in the breeze, the hair cells of the cochlea wave in fluid of the inner ear. That's what's been damaged-- with any hearing loss. With profound, they're primarily absent.

(Brittany) We found out that I am a candidate for a cochlear implant. We no longer rely on your whole ear system. We don't rely on the outer ear delivering the sound through the ear canal to the eardrum and middle ear space and using an acoustic signal of the cochlear inner ear. Instead, we use an electrical signal. The sound comes in to the speech processor. Instead of going through this ear system, it's delivered through the external device into the device on the other side of the skin. It's held on with a magnet. An electrode array is inserted by a surgeon at the hospital. They put it into the inner ear. It stimulates the hair cells-- or stimulates where the hair cells would have been in the frequency range that we want to bring that hearing back. We're at the point where for that right ear, since it's not helping, the audiologist and team at the University of Michigan think Brittany would benefit from a cochlear implant in the right ear and monitor that left ear since we've seen that progression over time. When she can't hear with that left ear well enough to be able to function and hear what's necessary to meet her daily needs, an implant will probably be recommended for that left ear.

(Brittany) I'm in the early stages of appointments and testing. I haven't made a decision yet. But I decided it could possibly happen over the summer. My vision is harder to explain. When we talk about vision, most people understand 20/20 vision. With my contacts, I have 20/200 vision. Without my contacts, I have 20/800 vision. When I don't have my contact lenses in, I can only see the very shape. They could be people, they could be object. I can't see the details of the face. In order to be classified as legally blind, a student who has 20/70 has a visual impairment. Once they hit 20/200 to 20/400, that is when they are classified as legally blind. And that is with best correction. That is after the student is prescribed glasses. That's the best they can see. Usually when it gets to that point, a lot of students' glasses don't work for them. That's when the large print and audio books and eye magnifiers come into play for their education.

(Brittany) But not being able to see things like everyone else is not the only issue. I see these little floaties in my eyes, but it's been there for so long I hardly notice them. I am completely blind in the dark. Photophobia is when someone has-- is very sensitive to light. Brittany has photophobia, which means when it is a brighter light, it is more sensitive and it can make the eyes hurt. So it's best to reduce the light and glare for best results from her vision.

(Brittany) Since I have always been deaf-blind, I don't know what it's like to see or hear. I can still work like everyone else, just in different ways. Things I use to make my life easier are a FM system, iPad, contact lens, hearing aid, a telescope, special education services, and of course, Mrs. Vauter. She's my one-on-one aid that has been with me since fifth grade. First, my hearing aid--I can't hear anything without it. An FM system basically helps me hear the teacher's query. The teacher wears a microphone that is like a radio. It broadcasts an FM signal that I am able to receive directly into my hearing aid. But when I'm listening to the teacher, I can't hear anything else near me unless I first push a button on my hearing aid. I wear a contact lens in my right eye. It's helped my vision greatly, but I still have a difficult time with steps or curbs. I see them as a flat surface. I have limited vision of things that are not directly in front of me. A telescope helps me see things far away, like if I am trying to read a street sign or see someone way down the hallway. I use an iPad in class to enlarge my paper work. It also helps bring the overhead to me. I don't have to carry a large-print book any more because I can enlarge the text on my iPad. As someone who has a disability, I qualify for special education services. These teachers help me with the things I need to succeed in my classroom. Monica taught me to read and type Braille. She also is the one who showed me how to use Bookshare on my iPad instead of using huge, large-print books. Monica worked with my classroom teachers to make sure I was getting what I needed visually. Mrs. Goldstein was my fourth and fifth grade teacher. There was times that we had to enlarge her assignments for her vision. We had to make them so they were bigger so she was able to see. Unfortunately, lack of-- we didn't. She was sitting there. She would-- She would never complain. She was trying to look and see and participate. We're like, "Hurry and enlarge the pieces for her." That is a testament of how hard of a worker she was, but she never complained. That goes to show the good person. She's always positive. She's just always worked hard and was positive.

(Brittany) Miss Kate helped me with my hearing. She helped me get a hearing aid when I was in school. She was usually the one to fix my hearing aid when it wasn't working. When my hearing got worse, she helped me make my hearing aid more powerful. Miss Kate worked with Mrs. Barkowska to make sure I had what I needed in class when it came to my hearing.

(Mrs. Barkowska) When it comes to socializing I face Brittany when I'm talking to her, make sure not to cover my mouth, make sure I ask her if she's heard me or can understand. But on the same note, I'll have to say we need to make sure we speak loud enough for Brittany. For the longest time-- Mrs. Vauter touched base on this-- Brittany would be so quiet and shy that I couldn't even hear her talk. I would have to say, "Brittany, I can't hear you."

(Brittany) Mrs. Vauter is one of the most important persons in my life. She's basically my eyes and ears for me in school. She takes notes and makes sure I hear the teachers' instruction. Mrs. Vauter is also like a mom to me. She actually is the one who told me it's okay to let people know what we have to say. I'm gonna add to that and say that I feel Brittany has a stronger drive. Brittany never says no. She's always willing to try it even though it's out of her comfort zone and most likely she will need assistance or she can't complete it, but she never says. She gives it a shot.

(Brittany) My least favorite place to go is to school. Like most teenagers, I hate waking up early. It's what I dislike about school. But also it's hard being a teenager who is different. And even harder when you know you are different.

(Mrs. Barkowska) Brittany is different than the rest of the students due to her hearing and vision loss. She has had to overcome other barriers-- day-to-day barriers that other students don't have to. I feel like she has to work harder every day. I'm sure her days are more exhausting than other students just to be able to hear and see.

(Brittany) I started school at a young age--two or three years old. When I was little, I would talk a lot to my classmates. But as I grew up, I became less social in school. Mrs. Nowak was my first and third grade teacher. Because of those impairments, things were harder for her. I made sure she could see me when I was talking to her. I made sure that the work was adjusted so that she could see the work. That was the biggest difference. She was still a girl and had friends.

(Brittany) I come off as shy. People think I don't want them to talk to me and they are doing me a favor by giving me my own space. Actually, it kind of bothers me because I like to talk a lot. But I don't like to be the first one to start a conversation because it makes me feel like the other person doesn't want to talk to me and they are just forcing themselves to because they feel sorry for me. The reason I don't talk a lot is because I'm afraid to make a fool of myself by not pronouncing some of the words right. It is all due to hearing. I cannot hear some of the sounds. Her thresholds fall down here in this profound range. So if we put the severity here on the grid, you can see that her left ear is in that profound range and then rises just into the severe range in the highest pitches. So it's a good example and a good visual to show she can't hear those speech sounds without a hearing aid. Her right ear, which is the circles, is even more impaired and falls in that profound range. So maybe she can hear this jet plane even though it's still above her threshold. That's why it really doesn't help her much for hearing.

(Brittany) There was a point in my high school career where I would skip school every week almost. I did that because I felt like I didn't fit in. As I looked around at everyone in my school, I would think, "Wow, these people are all normal, and here I am with disabilities." I felt kind of miserable during that year. I felt like I was the only person with visual and hearing impairments. I had teachers and family members who worried about me as I kept missing school. Then Mrs. Vauter said to me one day, "If you don't think you belong here, then where do you belong?" I didn't have an answer to that question. She pushed and told me that if I was so convinced that I didn't belong, then I needed to have an idea where I did belong. I didn't believe what she was saying was true. My mom wrote a note to Mrs. Vauter and Mrs. Barkowska, who worked together, asking if they could call her. I had no idea that this was happening. My mom was seeking help for me. She cried during the phone call because she didn't know what to do to help me. They organized a meeting with the high school counselor. When I found out I was going to be going to the counseling office, I wasn't really happy. After a little discussion and some tears from my mom and me, they came up with some ideas to help me get more involved with school and my classmates. They started to bring up organizations for me to attend. At the end of my freshman year, I became happy and knew somewhat where I belonged. I'm so glad my mom and teachers helped me because I probably wouldn't be as happy as I am now. Sophomore year I came back to school and I attended sport camp. Sport camp is for the blind and some hearing impairments to do sports. They will do anything to help those with vision loss do sports. This camp changed my view of myself. I felt like I am not the only person in the world with my disabilities. It made me feel like I belong somewhere, which was here. They also taught me that I can do anything that I set my mind to. Nothing can stop you. After I attended sport camp, I started to come out of my shell. Junior year I started attending ed-tech for digital media arts. I was thrilled to do some work there. I didn't know how it would work out since I need everything enlarged. I have to say that when I first learned I would have a student who was legally blind and legally deaf in my digital media arts class, the first thing I thought is, "How is this student gonna do what the rest of the kids are doing?" Because digital arts is a visual medium and you have to use audio. So when I first-- Before I met Brittany and I heard that, I wondered how it would all work. Then I met Brittany and though she was quiet, I could see by her work that she worked really hard to not let her disabilities... predict or-- She worked really hard not to let her disabilities limit her in the classroom.

(Brittany) I enjoy meeting people, but the class was mixed with other school districts and I just didn't want them to know about my disabilities. It also felt like freshman year again, like I was the only one different. Coming back to ed-tech the second year wasn't so bad. I started to open up a little bit more. Although I don't speak up for myself, I have learned that it's hard when I meet new people because I have to teach them that I don't need their help. Despite my disabilities, I can do things for myself. I really appreciate the things my classmates do, but I don't think they realize I can do these things. I can do anything, but I have to do it differently. In D.M.A., we produced a new program called "The Edge." Students were directors, producers, and reporters. The moments that stand out about Brittany is when we were in the studio and doing studio production and the thing that Brittany has the hardest time with in my class is speaking up-- speaking up for herself. I've really seen her grow. But as a director, you have to speak up and tell other people what to do. I wasn't sure, you know-- There's a lot going on. So having-- Being a director is hard when you have 20/20 vision and you have perfect hearing. Now add-- Because, as a director, you're managing the rest of your classmates, which is challenging. It's challenging as a teacher to manage a roomful of high schoolers. And then putting that onto a student is even more difficult. I always enjoy watching my students step up. But knowing that-- Speaking up has always been a challenge for Brittany in my class. When she took on the role of director, I was unsure how she would do. I remember when she did her first practice. You could tell that she had really been paying attention to the other students and had really prepared. We were just doing practices and she did her first practice directing and she rocked it. The rest of her classmates applauded her because she did such an awesome job. I just remember as a teacher going, "Wow. "Would I have done that good of a job...myself my first time?" So that's a memory that really makes me-- that stands out for me with Brittany in my class when she amazed not only me, but her classmates.

(Brittany) This year Mrs. Holladay picked me as her top senior in digital media arts. I'd take 20 Brittanys in my classroom. So when people say to me, "You have a legally blind, legally deaf student in your class?" I say, "She's one of my best students."

(Brittany) At the end of April, I traveled on a train with my digital media arts class to Chicago. It's the biggest city I have ever been to. The trip was the first time I had ever used trains and buses to get around. It made me realize that some day I could live in a city somewhere like Chicago and be able to get around by myself and not have to rely on other people. I am starting to see there are opportunities for me. This summer I will be very busy. After my graduation May 27, I will be going to Kalamazoo for a College Assessment for students with low vision. I was also accepted into Helen Keller National Center in New York City. I will spend two weeks there in July and August learning how to be more independent. Getting in was a surprise to me, but I don't think it surprised everyone, especially my teachers. Mrs. Stover-Lange is my 12th grade English teacher. I just think that as far as limitations that, yeah, Brittany has some physical limitations, but her drive and her willingness to learn and her willingness to change and accommodate and do the best she can do for herself. Everybody has limitations. Whether that's academic or in sports or physical, every single person has some kind of limitation. How you get around them, deal and manage them, Brittany's got that down. She knows how to get what she wants. I'm proud of her.

(Brittany) I worked hard to where I am. I won't throw all that hard work away either. I plan on going to college. Right now I think I want to study photography and art. I'm not sure what I want to do when I get older. But I think that isn't much different than most 18-year-olds. She never used her lack of sight or lack of sound as an excuse. She always tried to do her best, even though she did have those obstacles to overcome. I really appreciate all the people that helped me get to this point in my life. I plan on-- I really want to-- I plan on continuing in pushing my limits... and providing people with all I can do. So next time when you see someone like me, don't assume they can't do it. Let them show you.

Funding to purchase and make this educational production accessible was provided by the U.S. Department of Education:

PH: 1-800-USA-LEARN (V) or WEB: www.ed.gov.

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For her senior project, Brittany Winkleman created a video that tells her story as a teenager who is deaf-blind. The video follows Brittany through her last year of high school and highlights the support systems she uses to succeed in school.

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Runtime: 28 minutes

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