I sometimes think about how my life would be without “my disability”. I’m convinced that I wouldn’t be living at home, that I wouldn’t be working so close to home, where I grew up. I’m convinced that life would be very different.
Am I convinced that life would be better?
Everybody faces challenges in life. Disability has been and is my main challenge. But disability has also taught me most about life.
I got the train to Dublin on my own last week, for the first time in years. I met a lady in Limerick station. She looked at me and said, "What happened to you? Isn't it awful? And you look so young and normal". And I found myself answering in that familiar cheery convincing tone, "Oh I'm fine' and 'It could be worse'.
Smiling and waiting for my chance to escape. It reminded me of an interaction I had with a client in work last year. As I handed her the settlement cheque, she said, ‘Thank God I didn’t end up in a wheelchair, wouldn’t that be the worst thing?”
Negative attitudes
These experiences highlight negative attitudes and perceptions that exist about using a wheelchair. About disability. But they also tell me that people recognise the challenges that disabled people face. It’s not the worst thing. But it’s not always fine either. The reality is that there are many challenges. There are many “negatives”. It’s important to acknowledge that. Facing reality leads to change. This series of articles has been important in doing this. I and others have written about the lack of equal opportunities and the everyday barriers disabled people face in accessing transport, work, education. The everyday barriers and challenges to do something as simple as getting out of bed.
Every time I brush my teeth I think about a time I could do so with ease. Disability is challenging. Sometimes when I feel like visiting one of my sisters, I think about a time I could hop on a bus or just decide to go. No planning how I’ll get there, who’ll come with me, whether I need a ramp to get into the house or whether there’s a downstairs bedroom – and an electric bed.
Disability limits your options. It’s frustrating. A lot of the decisions I have made and continue to make have been based around disability, or accessibility. I decided to go to college in University of Limerick because it was so wheelchair accessible and had a well-established disability support service. When booking a night away, I don’t search by location, I search by accessibility. I have experienced life with and without a disability. I know that living with a disability is more challenging. I know that living with a disability that isn’t going to improve is especially challenging. Every time you overcome a new obstacle, there’s another waiting. But disability teaches you how to deal with these obstacles. How to deal with life’s challenges.
Brushing my teeth is a moment of every day of my life. Life is as a series of moments. Great moments. Awful moments. Short moments. Moments that seem to go on forever. My disability is forever. That’s overwhelming. So don’t think about forever. Think about moments.
Life is a series of moments. The moment I first realised something wasn’t right. The moment I was diagnosed. The moment my legs first gave way and I fell. The moment I heard my ankle break. The moment I sat in the wheelchair for the first time. The moment I saw the hoist for the first time. The moment I first used the coughing machine. The moment I told my best friend about my diagnosis. The moment I realised I wasn’t going to get better. All those moments that remind you that this is forever. Paralysing moments.
Good moments
But, it only takes a moment to change your mind. If I can't control my body, I'll try to focus on my mind. The moment I got my Leaving Cert results. The moment I got keys to my house. The moment I qualified as a solicitor. The moment I was offered my job. The moment I held my baby sister for the first time, and then my niece 20 years later. Watching Ireland win at the Rugby World Cup. You learn to appreciate the good moments. You learn that the bad moments will pass.
The older I get the less I think about how life would be without my disability. The older I get the more obstacles and challenges I meet. Less movement. More pain. More equipment. The older I get the more I have learned. It’s not always easy but I have learned that I’ll get used to the new pain and the new piece of equipment. I have learned that I have to. There are moments when you can feel very alone. Disability is at it’s core a very individual experience and everyone’s experience is different.
A lot of my worst moments have been because of my disability. But I can equally say that I have had great moments and experiences because of my disability. I’ll never forget the Egyptian taxi driver who insisted on lifting me in and out of the van at every stop as we drove through the desert. I was never a dog person. Getting an assistance dog has been one of the best experiences of my life. I believe that I have the best family, the best friends, the best colleagues.
Disability makes you reliant on those closest to you, and that can be challenging but it also strengthens relationships and bonds. I have met some of the best people I know because of my disability – doctors, physios, OTs, PAs. People I would never have met otherwise. I wrote before that when you begin using a wheelchair the world changes around you. It did. But there’s a lot I wouldn’t change for the world.
Platform Series: Aisling Glynn
1) Weren't they good to give you a job
2) 847 in Dublin, zero in west Clare
3) It's impossible to forget
4) I'm disabled . . . by society
5) Wheelchair versus plane
6) The number 42
7) What makes us disabled
8) Life's challenges
9) I don't think I'd get up in the morning