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My name is Mindy Joy Mayer. I have Usher’s Syndrome type 1. I was born deaf. My mother had noticed my deafness when I was 13 months old. How did she notice? She dropped a bunch of pots and it was very loud and it scared my older brother but I did not jump or cry. My Mother took me to the doctor to have my ears exam and there was no infection so my doctor referred me to an audiologist. I was profoundly deaf but I can hear some with my hearing aid. I wore hearing aid in both of my ears for a long time.

My parents had been struggling to get me to speak. It was very hard, and they realized that I couldn’t speak so I learned Sign Language Exact English when I was 3 years old. At that time, Sign Language wasn’t allowed. My Mother would sneak to meet a lady that has a deaf son. She will learn Sign Language then come home and teach me. Of Course I was expel from an oral school because I used Sign Language. My Mother and my best friend’s Mother and my Godmother worked very hard to open a deaf program in Deerfield, Illinois. It was accomplished. Many deaf kids came to that school, of course with Sign Language Exact English.

When I was 6 years old, my Mother noticed something funny with me. My family always goes on vacation to fishing, one night, it was very dark outside, and I lost my family for a minute, my Mother would come and get me. At my age of 8, my Mother took me to a regular eye doctor. He told my Mother that he sees inside my retina, there were webbings. He says there are two things, he suspected, I might have retina from rubella or Retina Pigmentosa. My Mother says that I did not have rubella, he referred me to University of Illinois in Chicago. We had to wait for 6 months to see Dr. Gerald Fishman. He is well known doctor for Usher’s Syndrome. We went to see Dr. Gerald Fishman. Dr. Fishman identified me with Usher’s Syndrome. At that time Type 1 and 2 was not identified until in 1990’s.

My parents decided to not share about my Usher’s Syndrome until later on. I still could see pretty good until I was about 12 years old, I noticed my vision had changed but I thought it was normal. When I was 11 or 12 years old, my Mother decided it was time for me to know about my Usher’s Syndrome. I did not accept and believe it. I also noticed in change of my hearing that I cannot use my right ear for hearing aid anymore so I remained with my left ear. When I was in mainstream Junior High school, I would try out for girls’ basketball. I was sad when the coach say that I cannot play basketball because of my vision. I felt down very much about that. When I was 12 years old, I went to Illinois School for the Deaf (ISD). I was insulted lots. They would insult me “blind”. That time, I started to notice more of loss in my vision again. I started to learn American Sign Language.
When I was 14 years old, my family went to Family Learning Vacation (FLV) at Gallaudet University. It was really worth! Funny, I met my friend when I was 10 years old. I remember I did not see her moving closer to me while I was pouring juice in a glass and I was going to give her the glass and I turned around, I bumped into her and the juice flew out and landed on her. When my family went to FLV, I was very surprised to see my friend and my friend was very surprised to see me too. We both realized that we have Usher’s Syndrome. We got closer and became good friend for long time, we are still friends today. Anyway, at FLV we met Art Roehig and other kids with Usher’s Syndrome. I felt happy that I was not the only one. When we got home from FLV, my mother heard about cochlear implant, she asked me if I was interested in cochlear implant as I heard about it at ISD. I told my Mother No, I am not interested as I am more happier being deaf. My Mother says ok and forgets it. I went back to ISD after summer vacation. I noticed that a teacher from Education Evaluation Center, she was evaluating children’s vision. I asked her what are you doing with them? She says that she was seeing if any of them needed glasses. I asked is there any Usher’s Syndrome kids here at ISD. She say no as she know that I was the only person. I told her it was impossible. We decided to schedule a time together. We got together and discuss about this. We decided to ask the Superintendent for the permission to evaluate the kids. We did that and we took 40 students and it turned out 10 out of 40 students have Usher’s Syndrome. We discussed how to approach them and their parents about Usher’s Syndrome. The teacher happened to read an article about Grace (I forgot her last name). The Evaluation Center decided to invite her to come to ISD and at the same time they invited the Parents of the student. My Mother asked me if she could come down and listen what Grace was saying. It was a huge success. Everyone including teachers and House parents went to that presentation. We were invited to come to California for a month. We did not have the fund. So we decided to do some interviews with newspapers and went out on presentations and we earned lots of money to cover everything for us to go to California. We stayed there for a month. It was lots of education and at the same time we the kids got closer and get know about each others. It was a great benefit for us all. That was in June 1985. When we came back to ISD after summer vacation, we opened Usher’s Syndrome support group. We get together twice a week. More Usher’s Syndrome students came to ISD and join us all. It was fun.

When I was 16 years old, I kept changing the hearing aid battery often as I thought I was getting lousy batteries. One day I got fed up and I asked my houseparent if my hearing aid was working or not. I gave my hearing aid to her; she hears it and says it is LOUD!!! I was puzzled, I decided to request for audiologist appointment. I went to the audiologist and he say that I am totally deaf. I cannot use the hearing aid anymore. When I got out of the world, I went to Gallaudet University, I felt that I did not get much of support as I understand today at Gallaudet University is doing much better with Usher’s Syndrome. I had some problem with my Vocational Rehabilitation counselor. I had to withdraw from Gallaudet University. I tried to get a job. I got a job at Underwriter Lab, I tried very hard to accomplish with my job, but I got fired because I was making too many mistakes. As I told them that I had vision problem. I accepted. I got a job at Computer Discount Warehouse. I got fired for the same reason. I accepted. I met a Vocational Rehabilitation (different counselor) he mentioned about Chicago Lighthouse for the Blind. I went there, I realized that there was only one person that worked with Deaf Blind people and he did not have much of knowledge about equipments. I explained to him about my experience. He showed some of equipments. I got a job at a Medical company (cannot remember the name) they were very eager to try to get me some equipments so I can work. After a while, they realized how expensive it was to get the equipments and decided to let me go. I gave up! I did not work for 6 years. I did some home jobs like babysitting.
One day, a friend I met once but we kept in touch time to time. She has Usher’s Syndrome. She called me and told me about Seattle Lighthouse for the Blind. I was scared to contact them because of my experience with Chicago Lighthouse for the Blind. In a few days, I decided to go ahead and contact them. They mentioned about Seabeck Retreat for Deaf-Blind Adults. They sent me application and I filled them out. It turned out I was accepted to go to Seabeck. Seabeck is in Washington State, it is a small town on the island out of Seattle. I went there, I was in a big shock because I had never seen so many Usher’s Syndrome and Deaf-Blind people. I stayed there for a week. I really enjoyed it so much. Seabeck Retreat is a place for Deaf-Blind Adults, there are workshops, crafts, trips, sports, dancing, socializing, ETC. 17 years old is welcome to go but must have an adult with the child. I talked to some people and they mentioned about Seattle Lighthouse for the Blind. I decided to apply for a job. They sent me application and I filled it out and sent it out. It was three months that I haven’t heard from them. I called them, they say that they never did have my application. I was disappointed. They suggested me to write a letter to the President of the Seattle Lighthouse for the Blind. I did! A month later, Paula Hoffman, the Director of The Seattle Lighthouse gave me a call and gave me a brief interview and told me that they will call me the next day, all sudden they changed mind and put me on hold for about 5 minutes or so. Paula told me the job has been offered. I took Amtrak train just with a trunk, suitcase and a small suitcase. I got the job at The Seattle Lighthouse for the Blind. It was a very struggling but I learned so much! I accomplished with my work at The Seattle Lighthouse for the Blind as I worked there for 9 years.

I lived in Seattle for 9 years and I learned lots about Deaf-Blind culture. Now I am back to Illinois as I want to be close with my family. I also want to help Illinois improve with Deaf-Blind. I am involved with HKNC, Laura Thomas with presentations as I went down to Jacksonville and joined Laura Thomas in the workshop for interpreter students to learn more about Deaf-Blind. I am also involved with The Chicago Lighthouse for the Blind. I work with Veramarie Baldoz doing some presentations for schools. I am involved in SSP Task Force. What is SSP? It is Special Service Provider, hard of hearing, deaf and hearing sighted people will help Deaf-Blind adults to be independent, they will take Deaf-Blind shopping, read mails, going bank, socializing, take to club, etc. Now, I am trying to go back to school as I know what I want to be. I want to be a Deaf-Blind specialist.


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