In my opinion - Orla O'Sullivan
I was born premature and at six-weeks-old, I got double pneumonia. The doctors gave me medicine to fight off the pneumonia, however, in saving my life, I lost most of my sight and almost all of my hearing.
I have a very full life. I have a wonderful five-year-old son, John A, and a brilliant partner, Danny.
Living with low vision is normal for me. I would love to be able to see all the beauties of nature. I would love to hear the birds singing. But I don't see all of them and I certainly don't hear them as my deafness is profound.
My sighted and hearing family and friends often try to explain and describe all those marvels around me. Imagination lets you see everything. Imagination lets you hear everything. My imagination has taught me so many things. My imagination has feelings too. And it has touch. With feeling and touch, it gave me a very special gift, the gift of music.
It was my mother who first saw this when I was a frustrated one-year-old who could not communicate and could not understand why. She put my fingers on the piano keys and saw my face light up when I felt the vibration. My life-long passion for music started that day.
Today, I am the only deaf vision-impaired music teacher that I know of. I never show or talk about my deafness and vision-impairment to my pupils. I used the term "DeafBlind music teacher" on my website but I had to remove it as I could not get new pupils. After that, business improved.
The education system did not teach me much of what I know. My mother taught me. My first music teacher, Jean Downey, taught me. There was some help in secondary school with one-to-one teaching. And there were some teachers who really tried to help. But most of all, I taught myself.
I was the only deaf vision-impaired pupil in a primary school of 500 pupils, where my mother was a teacher. I often cried and begged my mother not to send me.
Being singled out and humiliated every school day, particularly in my final three years, was something I can never forget. But, with my mother's help, I was a brilliant pupil. A very unhappy pupil, but still top of the class.
So, while being deaf and vision-impaired has given me many negative challenges in my life, it has also had some positives.
I have an amazing son. I am teaching him sign language and music. He has just started school in the very same primary school I attended. It is such a different place now. It has a dedicated facility for deaf pupils, which is brilliant, but there still needs to be a change in people's attitudes toward the deaf, blind and deafblind. All primary schools should include a subject about this to help combat the isolation these children feel.
In recent years, I have been collaborating on a music teaching system called Sound Senses, developed with two music and software experts, Brian Leach and Ciarán O'Kelly. it is about "feeling the music" through vibrations and touch. There is also a picture of sounds on a screen to "see" the music. With this, it is possible to teach music to the deaf and deafblind. In fact, anyone can learn from this. I use a special software monitor to enlarge music scores to make them easier to read. I then memorise every single note from the score.
Without music, I would be in a silent world. It has brought me to life. It has given me a way to show the world that a deaf and vision-impaired person can learn just as well as a fully-sighted and hearing person. It has given me a job.
My mother never let me give up and that strength of purpose has stayed with me. You have to believe in yourself. You will get there in the end.
- To mark World Sight Day, Fighting Blindness will host a public engagement day with eye experts in Dublin this Saturday, October 14, as part of the international conference, Retina 2017, at which Orla O'Sullivan is one of the speakers.