Visually impaired but will never lose sight of what’s important.
A story about navigating life with vision impairment and not holding back.
Hi. My name is Maria Umer and I am from Sydney, NSW. Today I want to share my story about how decision-making and different life choices have impacted my life.
I was born with Congenital Cataracts and my parents did not know about it when I was born. They found out when I was three months old and I was taken to different eye specialists to have a look and examine me. I was diagnosed with many different things, with one specialist saying one thing and another specialist saying another. They finally came to a conclusion, and I was taken in for a surgery which ended up being a disaster.
Following the surgery, my right eye optic nerve got damaged with a certain kind of a disease, and my left eye vision was really bad as well, so I completely lost my right eye vision when I was three months old. I didn’t really know about it, and I moved on as a regular baby who played and who did things like wanting to catch a ball. Still, there were many hurdles in my childhood.
When I was a young one, around 2, 3 or 4 years old, I was always wearing spectacles with a chain around my neck, so I always stood out. Since the beginning, I always stood out as a child. My parents never let me stand out like a person who had a disability. They always supported me and treated me like my other three siblings, there was no difference between me and them. If they were going out to play, I was going out to play, but the only problem was if they were going out to play with a ball, I couldn’t do that as I could not see the ball. My parents ultimately figured out that it was going to get difficult for me as I grew up, so they opted for different options for me like swimming. Swimming is the only sport that I know.
When I went to school, they chose larger prints for me so that I could read a little bit with my left eye. They provided me with extra lights on my study table in the classroom as well. That was good, but was yet another thing that made me stand out at school and brought a lot of questions from everyone. It was difficult.
When I was in grade 7, I went to my eye specialist just for a regular check-up and I found out that I was completely blind in my right eye, which I didn’t previously know. I thought the way that I saw the world was how it was. That was the most devastating day for me. My left eye has very low vision and no one can stop that from deteriorating as well. So sooner or later I will go completely blind, and I will not be able to see what I am seeing right now. Small shadows, little shadows, but still I am able to see light and optics and things like that.
When I was a grade 7 student who was 11 or 12 years old, I had my dreams. On that day, my dreams shattered, and I locked myself up in my room for several days and I cried. I tried to be positive, I tried to do a lot in those couple of days, trying to figure out where I was heading and what was going on in my life. Ultimately, I figured out ‘No Maria, it’s OK. It’s fine. Things happen. You have to accept it and move on.’
I wanted to do something. I wanted to have an objective in my life just like any other girl, and I wanted to achieve those objectives. I went to my parents and I cried my heart out and I said I don't know what happened when I was a baby but I'm not going to let anything happen to me again for as long as I live. So anyway, I did my studies and my parents supported me a lot in that. They gave me every aid to complete my education. It was suggested that I take up Computer Sciences as it was an easier way to read, write and understand things. I had larger fonts and a program that could speak to me as well. With these aids, I completed my Bachelors in Computer Science, specialising in system analysis and logic design. I worked for a couple of years in a multi-national as a system and business analyst and achieved a lot of goals. That was a very big booster for my own self ego.
I went to different parts of the world looking to see if there was any treatment for my eyes. I went to Europe, I went to Russia, I went to America but everywhere I went I was just told, ‘No, it’s not possible Maria. At the moment it’s not possible.’
So, I moved on. I continued my swimming. I continued my studies. I completed my Bachelors and then I went into the corporate world and started working in Telecommunications in Australia. But after a couple of years, I realised that my sight was deteriorating further and there was too much burden on my one eye. It was like another earthquake in my life. The second phase of disaster. I was devastated. My best friend who is my husband now, my life partner, supported me a lot during that time. He showed me how I could be positive about my disability and how I could be an inspiration for others.
I got married in 2015, and in 2017 I had my baby boy who is now 3 and a half years old. He is such a beautiful boy and so understanding. He loves to get mum to help him with many different things. So, despite my disability, I just carried on. I have a small house, a loving husband and a child who loves me unconditionally. Life goes on. Every day is a new challenge and brings new learnings.
There have been times when my little boy asked me to do things and I'm just speechless. I don't know how to say no to him. Just recently he started asking me to read him story books, which I'm not able to do, so that breaks my heart. Just a couple of days back he was like ‘I'm going to have a house and I'm going to have a car and mummy's going to drive it.’ I'm listening to all his words, his conversations and his thoughts, and it makes me question whether I'm going to be a good mother, whether I'm going to be someone who he can look up to someday. I wonder, when the right time comes, how I am going to tell him and how will I explain to him what is wrong with how I see the world.
How do I let him see how the world looks from my eyes? My vision at the moment is so weak that I cannot provide food for him. I can feel him, I can feel where his nose is, where his little eyes are, but I can’t see. It’s like a shadow for me. I don’t know how long even that is going to last, but he gives me hope every day. Every day I listen to him and it gives me motivation to live and to be a better person and be an inspiration for him.
I would also like to say the positivity that I have in me right now is because of my education. It was a blessing that my parents chose to continue with my education and give me as much opportunity as any other kid to complete my studies. I am thankful to them for giving me that opportunity and making things easier and more accessible. Education is very important, whether you have a disability or not.
Today, I know what my rights are and what my obligations are because I am an educated person. I know how to go about accessing resources and use resources to get assistance for myself in any aspect of my life. Whether it’s medical support, physical support or assistance with my capabilities, I can get the support because of my education. Education has given me reason, education has given me hope and education has given me light at the end of the tunnel.
Now, I am a woman with a disability who is trying to do the best in my life and be an example and advocate for people who have a disability. I can talk on behalf of other women with disability and fight for their rights and fight for what they deserve.
Note: This story was written by Speakers Bank based on an interview with Maria Umer.
Tip: If you would like to hear more about Maria’s story, you can watch her video on the Speakers Bank YouTube channel.