The following is an interview I conducted via FaceTime, with Faye Frez-Albrecht, a former student at the American School for the Deaf in West Hartford, CT. Faye has Usher Syndrome and is currently a junior at Gallaudet University studying Physical Education and Recreation.
Karen: Hi Faye! It’s great to see you after all these years! So, I have questions for you about the past, present, and future! Should we start with the past?
Karen: I’m curious to know how and when you learned you had Usher Syndrome.
Faye: Sure. It took a long time for me to fully understand about Usher Syndrome. Of course I knew about being deaf. If I took my CI (cochlear implant) off, I couldn’t hear. But when I was about 7 or 8, my Mom read a children’s book about Helen Keller to me and compared me to her. She told me I would lose my vision. I was probably about 10 when I really began to understand that. But I don’t think I knew the name Usher Syndrome.
Karen: Well that probably wasn’t as important as understanding what was happening. You started to learn braille when you were in high school. Are you using braille today?
Faye: No, high school was the last time I used braille. I do use braille numbers though, especially in elevators where the numbers are hard to read and it can be dark.
Karen: You received a cochlear implant when you were two years old. What are your thoughts about CIs and their usefulness?
Faye: Well, they’re not perfect and not for everyone. And they don’t always help with language development. I think you still need a visual aid like sign language. Some people with CIs do hear like hearing people but for me it’s like a robotic hearing or artificial hearing. I think CIs are good for environmental sounds and for people who enjoy music.
Karen: That makes sense. CI’s were originally developed for deaf adults who wanted more access to environmental sounds.
Faye: Yes. I do think the CI makes me feel safe when crossing streets.
Karen: In thinking about your past, is there anything you’d like to add? Things you wish you had known or had done differently?
Faye: I wish I had known that certain foods help your vision. Eating a healthy diet. I try to eat an Asian-type diet with rice and lots of veggies, especially dark green ones. I am gluten-free too. Gluten gives me brain fog. I eat a lot of tofu, beans and fish. I avoid foods high in sodium and sugary drinks. They give me spots on my vision and if I don’t drink a lot of water, I’ll see spots. So I try to choose foods that have a lot of water in them because it’s hard to drink a lot of water.
Karen: It’s hard to believe you graduated ASD 4 years ago! And now you’ve been studying at Gallaudet University. Did you expect to see yourself there?
Faye: I never thought I’d go to college. I didn’t do well in school. I didn’t understand what was going on. The teachers sent me to the resource room for special education to do my homework. That’s until I went to the deaf school. I still didn’t do my homework, but then I started to realize it was my responsibility.
Karen: So going to a school for the deaf helped you?
Faye: Yes, learning sign language and being on your own. Learning responsibility.
Karen: How has your experience at Gallaudet been?
Faye: It’s been very convenient. Here in DC, I’m not stuck at home, relying on people to take me places. I can take the Metro or a bus to go out with my friends, go get a haircut. It’s given me a lot of freedom.
Karen: And what about your education?
Faye: It’s been nice. There’s a big deafblind community here. They provide interpreters for my classes. Two interpreters who change off every 20 minutes, because I can’t see all the students, or even what the teacher is saying. It’s a small school here and they give me the accommodations I need. Because it’s so small I can go directly to the teacher when I need help. Everyone says Usher Syndrome is rare, but I can find many people with Usher.
Karen: What has been your biggest challenge at Gallaudet?
Faye: I would say homework. It takes me 2 to 4 hours to finish a homework assignment. Sometimes I have to read 20-40 pages. I have some memory issues and have to take notes. Some teachers forget that I take other classes. They don’t always understand my struggles and I have to educate them. I’ve been allowed to extend my time on homework assignments to up to 72 hours. I’d say a challenge is lack of free time.
Karen: Yes, that’s a challenge for many college students, but I certainly understand your struggle. You’re majoring in physical education. What do you hope to do with your degree?
Faye: I want to be an athletic trainer.
Karen: Oh wow! Can I hire you?
Faye: (Laughter) Sure!
Karen: You recently traveled to Japan. For as long as I’ve known you (and that’s been since you were 2!), you’ve been interested in Japan and wanting to go there. What was that like? Did you travel with a group, or on your own?
Faye: I traveled on my own.
Karen: Did you pre-plan it with reservations and all?
Faye: Yes, I did a lot of research to know the safest places in Tokyo. It’s a big city with many people. But I got a hotel right near the train station. Tokyo is a very safe city. Women can walk alone at night and feel safe.
Karen: You told me you met many deaf and deafblind people. How did you meet them? Did you go to a school?
Faye: No, I knew an international student from Japan who was studying here for a couple of semesters. I guess she wanted to learn English and ASL. I was surprised there are many people in Japan who want to learn English and ASL. I contacted her to see if she’d be in Tokyo when I was going to be there. She was, but she also asked her friends to come see me. She told me I should be with someone at all times.
Karen: Did you study Japanese before you went?
Faye: I tried to study Japanese but people told me I wouldn’t need it. I did study Japanese sign language but my teacher was from Osaka and I was going to Tokyo where the sign language is different.
Karen: Well, I’m very impressed with you Faye! Where do you see yourself 5 years from now?
Faye: My future plans changed after visiting Japan. At first, I wanted to be a trainer at Gallaudet with deaf and hearing people. Now I want to move to Japan. It’s very deafblind friendly. I do know it’s hard for deaf people to find jobs in Japan. There are some jobs in computers or in factories.
Karen: Can you be a trainer in Japan?
Faye: Yes! I’d like to do that.