I WAS BORN with scoliosis, so I have lived with disability from birth. But most of my life I didn’t think of myself as ‘disabled’. I was just getting on with things and facing the practical challenges that came with my disability.

Indeed, for a long time the word ‘disabled’ hit a raw nerve with me. It was another label – along with Black and child born in a Mother and Baby Home – to be added to my name. And when I was younger, I worried that people would see me as weak.

Scoliosis is a sideways curvature of the spine. If the spine is out of alignment it has an impact on growth and on the development of internal organs. So, when I was eight years old doctors attempted a surgical procedure – spinal fusion – that they believed would improve my condition.

Unfortunately, the operation did not go as planned and I ended up needing further surgery to undo it. I had walked into the hospital but after the surgery I no longer had feeling in my legs.

At the time of my operation, in 1981, my mother was terrified that the medics would underestimate me because I was so small and frail. Her fear was that if my condition deteriorated doctors might assume I was not strong enough to fight to stay alive and would not do everything in their power to help me.

She knew that even if my body was weak, my spirit was anything but. “She’s stronger than she looks,” she said to them, “she’s a real fighter.”

I was too young to fully understand why I had to remain in hospital, unable to sit up, turn myself or feel anything from my waist down. Yet, my question wasn’t “Why can’t I walk anymore?”. All I ever wanted to know was “Why can’t I go home?”.

My family was my safety net and my comfort zone and here I was alone in hospital and feeling very confused. I can remember every visit – me begging to go home with whoever was in and promising to be ‘a good girl’ if they took me with them.

It really did take the love of my parents, sister and extended family to get me through that year-long hospital stay. Yet the trauma will never leave me. I can only imagine how traumatic it was for them too.

Determination

Coming through that experience – eventually getting home and, with my parents’ amazing patience and help, learning to walk again – only added to my determination and strength.

I believed I could get through anything that was thrown at me. Also, I know that deep down I wanted to prove that ‘disabled’ didn’t mean ‘inferior’. That tells me something about beliefs I had internalised, despite everyone’s love and support.

I think anyone growing up with a disability, or who acquires one later in life, will understand that coming to terms with it is complicated.

Over the years, I really didn’t want to focus on what I could not do; I wanted to try everything, and thankfully my parents always encouraged me to give things a go. If it didn’t work out, no big deal; if I succeeded, that was a bonus. And I tried as many new things as I could.

I’m not sure if I was trying to prove something to myself or to everyone else, but it gave me the determination to get to where I am today: I’ve travelled widely, I drive, I have a wonderful social life with my family and friends, I’ve had a fantastic variety of jobs (including working as a beauty therapist, in a bridal shop and in all kinds of great companies like Ryanair and the VHI).

When writing my book, looking back at the surgeries and trauma I faced, and subsequent experiences of illness, I had to ask myself: ‘How did I get through it all?’ and to be honest about the answer.

‘I couldn’t quit’

It’s important to say that for people like myself, who may seem to breeze through adversity – and that is certainly the impression I like to give – there is no easy route. I used to think that it was up to me to make it easier on my family and friends, as the guilt I felt at what I was putting them through was so overwhelming at times.

I knew I couldn’t quit. You summon every last breath in your body through the pain, stress, fear and heartache. When you have a good day, a good hour, this is where hope gets in. You use that hope then on the bad days – and believe me there are many of them. And it’s not just the physical illness, it’s the mental anguish, which for some people can be so much harder.

Thankfully I am a positive person, so even in the depths of despair, I knew I could overcome whatever I was going through. While I know I’m blessed with a naturally positive outlook, and a wonderful family who have supported me all the way, I believe the human spirit is strong within us all, so even when we want to give up, something always pushes us that little bit more.

Today, I feel differently about disability. I believe it is important to embrace it for myself, and more importantly for others, so that people don’t automatically puts limits on what we can achieve. We are far from incapable – we simply have to adapt to our way of life.

When I was younger, I don’t remember seeing many like me, or indeed with any disability, in the public eye. Yet, when I visited the Central Remedial Clinic in Clontarf for physio, activities or swimming, there we all were!

It is great that now we see so many amazing people with disabilities representing Ireland and their countries in the Paralympics and the Special Olympics and more widely in the media and public life generally. It really is important to see everyone represented.

I am proud to speak about what I have gone through and about my life now. I hope I can be one of the many faces of disability for the public.

I know it takes a lot of strength, courage and resilience to overcome the odds.

But it is possible. I am proof of that.

Yeah, But Where Are You Really From? by Marguerite Penrose is published by Penguin Sandycove and available in bookshops now.