Living with a Disability by Sandra Corr McEvoy

My name is Sandra Corr McEvoy and I have an Intellectual Disability. I have been like this as long as I can remember but I wasn’t born this way. When I was a baby, I took very ill and caught pneumonia. Because of this, I suffered an Acquired Brain Injury. I was put into an induced coma and suffered multiple Epileptic Seizures. I could have had 50 to 100 seizures on a daily basis. At the time, this was very hard to manage. I needed to be placed in a special boarding school where there were staff to help me when it was needed as the epilepsy was so unpredictable. Having a disability has left me feeling isolated because of the lack of control over my own body and my brain. People often don’t realise that I have a disability because I don’t look like I have one. I have friends who look and speak like they have a disability and people treat them very badly. People don’t know what it feels like to have a disability. Having a disability makes life challenging and when people say bad things it makes it harder for all people with disabilities. I have been asked many questions in life about my disability so please join me in learning about how my disability affects me and makes me feel on a daily basis.

What is a disability?

When we Google the term disability we get the meaning: it’s a physical or mental condition that limits a person’s movements, senses, or activities. It has an effect on a person’s ability to carry out normal day to day activities, but to me Sandra Corr McEvoy, a disability is something that stops me from living the life I want to live and how I want to live it.

What is it like for me to have a disability?

Terrible! Having a disability stops me from doing the things I want to do. It stops me from taking holidays alone, living on my own, having a say over my own life, or having children. It takes away the simple things many people take for granted in life. It stops me from having intimate relationships like a normal person or couple. It makes me feel like a child. I don’t like how people look at me or treat me because I have a disability. They forget I still have feelings just like everyone else in the world. I just want to be treated normally and with respect. I always think negative things about myself and my disability and forget about the things I can do and what I have achieved and the good qualities that I have.

How does having a disability make me feel?

Very sad! Very uncomfortable in myself and around others. It makes me feel that people don’t want to talk to me or want to be around me. It makes me feel angry because sometimes I can make mistakes and do things wrong and I don’t mean to but it’s because of my disability. It makes me feel scared because if I ever do have a seizure people might laugh at me as they are unaware of what is happening. Having a disability makes me sad because some people are cruel and make fun of me and how I act and how I look. It makes me feel sad because I had to go to a special school and I could not do a normal Junior and Leaving Certificate like everyone else. This meant that I could not get a good job. I feel like the odd one out in my family. Compared to my brothers and sisters, I am different.

I feel like people treat me differently because of it. If I’m in work and a customer comes in and asks for something and I don’t understand what they are looking for they can get frustrated with me. Then maybe a staff member can get angry and give out to me telling me I should know what the customer is looking for as I’m working there long enough to know, but they don’t understand my disability.

I was travelling on the bus not so long ago. A lady sat down beside me with a baby in a pram. Her partner was beside her and told me to move out of my seat so that he could sit with his partner. I refused as I have a disability and I also have arthritis in my knees and cannot stand for a very long time. Another aggressive lady stood up and told me to move and began to threaten to harm me if I did not move. When I still refused the bus driver listened to the aggressive lady and took one look at me and said I had no disability, there was nothing wrong with me. I feel that some people think they can treat people with disabilities differently and get away with it. It’s very disrespectful and hurtful.

How does my disability affect my life, my rights, my choices, and my independence?

I am restricted to a home that I do not enjoy living in. I feel that choices are being made for me. I would love to have my own home but the choice to do this has been taken out of my hands as I am unable to cook for myself and I don’t like being alone at night. I do not have the same rights as others do, I cannot buy a home or drive a car. I cannot go on holidays alone or travel to many places alone. I do not have the same independence as everyone else. I do not have the same education as most people and as a result, I do not feel as smart as my brain does not function the way a normal brain functions. Some people with disabilities are not allowed to get married. I don’t think that is right. If someone wants to get married it should be their own decision and not their parents.

My research about disabilities

I did research called ‘Attitudes towards People with Disabilities’. I learned how to do research in Trinity College. I did the research in 2009 with Emer who worked in Prosper. Prosper is a day-centre for people with disabilities. I did the research through The Inclusive Research Network. I wanted to find out about other people with disabilities and how people treated them. You don’t hear of many people doing research about people having a disability. I think this is very important and that people should do more research about disabilities. It means a lot to me. It was my first time doing research and I loved it. It took a lot of time and it took a lot of my energy. It took a lot of Emer’s time and energy too. I got on well with Emer and we worked great together.

Are there any good qualities or positive things about living with a disability?

Sometimes it’s very hard to see any positive things in life but I am very lucky. It has been 20 years since I last had a seizure, so that alone is something to be happy and positive about. Even though I have a disability, I found a beautiful man whom I loved with all my heart and he loved me. His name was Larry, I had a dream come true, and we got married. I will treasure this memory forever. I got married on the 20th of December 2008. I did not think that I would ever get married because I have a disability but I did. It was the best thing that happened to me. Sadly, Larry passed away on the 24th of January 2009 from oesophagus cancer. It was one month after we got married. I think of him and miss him every day. Larry meant the world to me. Larry was the only boyfriend I had. He never took advantage of me because over my disability and I never took advantage of him.

I am a very talented swimmer and got to take part in and represent Ireland in the Special Olympics in Athens. I brought home an Olympic Medal for Ireland. This was a very big achievement for me and I worked so hard for it. It was even more special having my sisters with me to support me every step of the way. I love knitting and I’m very good at it. I’ve made all sorts of things for my grand-nieces and nephews like blankets and cardigans. My grandniece Sofia still sleeps with her blanket today. She loves it. I made a very special cardigan and blanket for my goddaughter for her christening that my niece has safely kept away for her as memories for when she is older.

I am an aunt and a grandaunt. I love going to visit my nieces and nephews and brothers and sisters. My grandnieces and nephews love having me stay with them and I love them so much and would do anything for them. I’m a brilliant aunt to them and they love spending time with me. I am a wonderful godmother to my two godsons Jason and Ryan, and my only goddaughter and princess Caoimhe. When I ask my nieces, what are my good qualities they tell me how much I am loved by them and their children and how much the kids love me because I am so good to them and great with them. They say they are blessed and lucky to have me in their lives and how special I am to them and their children. They tell me how proud they are of me and all I have achieved in life and how proud my sisters and brothers are of me. So I guess there are some positive things for me in life even though it may be hard to see sometimes. I would like to thank all the family and friends who have always been there for me and help me to see all the good things I am blessed with in life.