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"What happens when I'm gone?" - The question every parent of a child with a disability dreads

You know how I go on and on and on about disability rights? I’m not alone. Last night I had...
Newstalk
Newstalk

16.11 18 Mar 2016


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"What happens when I&a...

"What happens when I'm gone?" - The question every parent of a child with a disability dreads

Newstalk
Newstalk

16.11 18 Mar 2016


Share this article


You know how I go on and on and on about disability rights?

I’m not alone.

Last night I had the privilege of attending the launch of Tom Clonan’s bid for one of the three Senate seats in the Trinity College Dublin constituency. Tom asked me for permission to read one of my old Undaunted columns. I reached into the archive and chose this one.

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It was written in April 2013. I was aware of friends with young children with disabilities. They were beginning their own journey of struggle. I reflected on my mother’s and my struggle. I felt tired. I wanted to help but tiredness gripped me.

I’ve fought every step of the way. Bus pass. Fight. Education. Fight. Any tiny little aid. Fight.

Of all the Undaunteds that I’ve written, this seemed to chime with Tom’s campaign. He understands the fight and the individual struggles he must have in order to support his son.

Tom is a relatively young man yet he is haunted by questions. They are questions which you usually hear elderly parents of children with disabilities say.

What happens when I’m gone? Who will fight? Where will my child end up living? Will s/he be seen as an equal citizen?

Tom knows what that question feels like. His son Eoghan sits in a wheelchair that is too small for him and has done for over a year.

Think about that.

If that happens to people like Tom and Eoghan, what about the families who do not have the strength to stand up and fight.

That fight takes some perverted shapes. Parents may be forced into over-emphasising what their child’s deficiencies are in order to fit into any meagre funding structure which may exist. Imagine that. The child you love. The child you see doing amazing things every minute you are with them. That child must not be seen. The impaired child, the sickly child is all that matters to the state.

Tom has been through the system and, so far, it hasn’t ground him down. Yes he is angry but the anger has a focus.

As I’m on the Electorate for TCD, I’ll be able vote for Tom. I know he won’t waste my vote.


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