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'I started using a wheelchair at 18 and instantly became isolated but I just want to be wanted, like everybody else'

‘People get tired of the fact that I live with my physical issues every day as if it’s a burden for them’, writes Niamh Ni Ruari.
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I AM ISOLATED because of my appearance, because of my wheelchair.

I was diagnosed with a rare form of cancer called langerhans cell histiocytosis LCH when I was three years old but it didn’t present itself in any life-threatening organs and three months of chemotherapy put it into remission.

After that I was an active child and enjoyed swimming, gymnastics, horse riding and basketball.

It was believed that I would never have to face the illness again but at 13 it came out of remission.

I started showing neurological symptoms. My speech started to slow down and I started walking with a limp.

About three months later I was diagnosed with a neurodegenerative condition, relating to LCH, that was attacking my cerebellum.

‘Different attitude’ 

When I was 18 years old, I started using a wheelchair and people immediately had a different attitude with me.

They viewed me differently, treated me differently, and even spoke to me differently. I feel that some people don’t consider my opinion as sincerely as they would if I was presented any other way.

Others are obnoxious and some people are just oblivious that wheelchair users have the same rights as the average person.

Of course, there are the few who treat wheelchair users like everybody else; but these people are like finding a diamond in the rough and are extremely rare.

I have lost contact with old friends, partly because we grew up and lost contact, and partly because I didn’t want friends who knew me when I could walk to see how much I had deteriorated.

‘Want to be wanted’

I became pregnant at 22 and took a year out of college. My son is now 15-months-old and pulls at everything in reach.

I depend on my partner to take items he shouldn’t touch off him as I’d be worried I might drive over his foot in the process – plus he knows to run away from me when I try to take anything from him.

We live with my parents as its near impossible to find a suitable place in Dublin for the three of us with my wheelchair.

When I returned to college after having my son I was determined not to feel isolated like I had previously. But it happened again, as if I had made the same wrong turn.

I think people get more complacent and apathetic as they get used to me. They get tired of the fact that I live with my physical issues every day as if it’s a burden for them.

When most people see different, they avoid it.

But I am the same person, my appearance is the only difference. I still think the same, I still give the same banter and I want to be wanted, just like everybody else.

Not talking to someone and giving them the ‘cold shoulder’ is like a form of punishment.

But I don’t deserve punishment, life has just been harsh on me. I shouldn’t be punished for a change that was far out of my power.

I have a few months left until I graduate but I don’t expect better treatment in the workplace.

There’s a perception that the chair is a tragedy but I see the chair as a tool for enabling my body.

Niamh Ni Ruari is mother of one and final year student in Dublin City University.

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