Katie Kelly: ‘If I have to fight for opportunities, I will fight every single day’ - Kilkenny Live

Have you ever met someone in a wheelchair? People assume everyone in a wheelchair has the same or similar stories, but I can safely say that’s not the case. We all have our own. This is mine.

My name is Katie. I am from Kilkenny and I am 24-years-old. I have been a full-time wheelchair user for 12 years. I have a progressive disability called ‘Friedreich’s ataxia’ and if I am honest, it’s hard work and it is quite scary at times. It’s scary in the sense of what my future will be like for me.

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For example, now I can stand up but in ten years or even five years, it could even be next week, I won’t be able to stand up. This is something that I didn’t understand when I was young.

I think because I was diagnosed at the early age of six, I grew up with my disability, and it became normal to me.

It’s okay though. I have realised in recent years that I might as well enjoy life because there is no cure for my condition. With that in mind, waiting around for one to start living life would be a very silly thing to do!

Life is far too precious. I am one of the lucky ones.

Yes, I use a wheelchair, but I only use a wheelchair to get around.

My legs do not always behave themselves and I have poor coordination and my balance is poor, sometimes my voice is a little shaky but the way I see it is my head and my heart work perfectly, my personality is my own, so I do not see a problem.

The most frustrating thing I face every day is that people make up their minds about me before they give me a chance to talk. And it’s always sympathy.

Sympathy for being in a wheelchair. Ridiculous. I do not need sympathy — it just brings me down.

Some people think that because I am in a wheelchair, that I am miserable, no fun and can’t do anything for myself.

I’m quiet but I can say for sure that’s not me and I hope it will never be me!

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I have been approached by strangers on the streets in Kilkenny who tell me ‘what a great little girl’ and I get handed money.

I have been in shops in Kilkenny and I have heard staff say ‘what do we do with her?’ or ‘stay out of her way’ as if I can’t hear them.

The one I love the most is when people talk down to me like a baby or when people talk to the person beside me instead directly to me. That’s sarcasm, by the way, I don’t love it.

I sometimes meet my brother for coffee and the person serving us says ‘what does she want?’.

Sometimes I do speak up but most of the time I can't and it’s a hard thing to do when you get a confidence knock like that.

The chance of you then talking again is unlikely because it’s embarrassing!

Over recent years, I have become very aware of my mental health because I have had many moments in life where I have struggled, and I need to keep myself happy and healthy in every way.

When I tell people I sometimes struggle with mental health, they automatically think ‘well yes obviously, you’re in a wheelchair, it’s only normal that you're struggling’.

Of course, it’s not the easiest thing to live with, but I do not blame my disability for anything.

Some people think that because I am a young woman in a wheelchair with a physical disability, that my mother is my full-time carer, the strong female figure that I need, and someone I turn to when things were too much.

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But unfortunately, I lost my mam when I was twelve when she lost her battle with cancer.

As a result, I had to grow up earlier than all my peers.

It is not an easy thing to do, saying goodbye to your mammy at such a young age. And then there’s me, trying to become a young woman in a house with four brothers and your dad!

A job and a half, but she taught me well. I think she left a little bit of her strength for me, she knew I would need it.

What is it like to be in a wheelchair?

Now, I’m probably not the best person to answer that question.

Yes, I am a full-time wheelchair user but it has never stopped me from doing anything. I might do things differently or a little slower than some people but I always get there.

If I need help, I will ask. A lack of chances and opportunities is the biggest daily battle for me but, I have a secret weapon, hope.

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Not hope that I will get up from my chair and run around, I have hope that things will get better for me.

I don’t see my chair. I’ve learned to adapt. I don’t get up and walk around. Nobody would remember me if I was ‘normal’ - being unique is a good thing!

My story is not a sad story, I hope it is an inspirational story. I’ll probably never run around but I might do another skydive, I’ve already done three!

Having a disability is like a rollercoaster that I’ve been riding from a young age. It has been quite a bumpy ride, with many ups and downs.

I’ve fallen back, I’ve lost people on the way, I’ve gained people and I have people who have been holding my hand through everything. The good, bad, laughs, and tears.

Even when I want to scream and shout and try to get off this rollercoaster, I’ve always had a reason to stay.

I am proud of myself for facing my disability with courage every day, but being proud is only a small slice of it.

It takes determination and strength to be in a wheelchair! Not physical strength, but mental.

Having a sense of humour helps. I am an extremely stubborn person and giving up is the last thing I would dream of.

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If I have to fight for opportunities, I will fight every single day until I’m old and grey. If I have to make phone calls every day for the next ten years I will. I just want a chance to live a life with a bit of a purpose.

I have had too many days over the last couple of years where giving up would be the easiest option but it’s not in my blood just to give up and my heart demands me to keep going every day.

Few people see my bad days, not bad days because of my disability, but bad days because I don’t have opportunities.

The only way to explain how I feel is straight out and to the point.

I wake up every Monday and I wave everyone off to work. I get dressed and have breakfast, all the coffee a girl needs. I could then spend the day sitting on my own.

Sometimes I watch Friends or rearrange my room, usually with my Google Nest and the volume turned up full, my 60s playlist playing in the background.

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Now I know what you’re thinking, that sounds lovely! But when that’s your life, every day, all day?

I sit at home every day and wonder why I can’t get out and go to work. I wonder then, why am I so lonely? Is it the wheelchair? It can’t be.

Sitting at home with thoughts like that every day, it’s like being at war with yourself, it’s exhausting.

The weekends are just as bad. It’s like Friday evening comes around and everyone comes home, freshens up, and goes again.

I’m nearly saying hi and goodbye in the same sentence. They all have partners and families, so I can’t expect them to sit with me and do nothing. And I do not understand why I feel like this. I think it is jealousy.

Yes, I’m jealous because they’re living life and I’m not. I want normality but I don’t have much of a chance to live a life outside my house.

If people could only see my anger, and my frustration, live with my loneliness and isolation, sit with me and dry my tears, they might understand.

Now, I would like you to have this picture in your head of this girl that has her wheelchair, is happy, confident, carefree, and is always smiling - because that’s me.

I don’t always have a chance to let that part of myself shine. You know the girl that’s good to be around, that will come out with a witty comment, I like that part of me.

I know I have used the terms ‘I’, ‘me’ and ‘myself’, but that’s only because my story is personal.

I know I’m not alone with anything I have said and I hope my story helps someone, wheelchair or no wheelchair!