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My simple New Year's wish is for my son to live in a truly equal Ireland

One of my boys, Eoghan, suffers from a rare neuromuscular disease. He cannot walk. As a parent, I am becoming increasingly concerned for his future. What will happen to him when I die?

Tom Clonan

THE LONG DARK evenings of Christmas can be a time for reflection. In the glow of twinkling lights or by candlelight, we often pause and think back on the year. For many, it is a time for New Year’s resolutions.

This New Year is especially significant for Ireland. 2016 represents the 100th anniversary of the Rising. It is a time to look back and try to make sense of the events of Easter Week 1916.

It is also an opportunity to look forward and to re-imagine our Irish Republic. After the intellectual and ethical failures of the Celtic Tiger and the false narratives of austerity, I have one simple New Year’s wish for Ireland.

But, to explain this aspiration, I first need to bring the reader back in time. Back to a recent Christmas past.

In December 2010, just a few months after it had been refurbished and re-opened, I brought my four children to the Natural History Museum. Known as the ‘Dead Zoo’ to generations of Dubliners, a visit there is a rite of passage for most kids, from all over the country.

5/12/2014. Museums Could Close Down Natural History Museum in Dublin Source: Sam Boal/Photocall Ireland

It is an opportunity for children – and adults alike – to get up close and personal with everything from giant spiders and beetles on the ground floor to lions, monkeys and wolves on the first floor. My kids loved it.

He cannot walk 

There was only one problem. One of my boys, Eoghan, then aged 9, was a wheelchair user. Suffering from a rare neuromuscular disease, he cannot walk.

So, when his two brothers and sister scampered upstairs to see the monkeys and lions, Eoghan was left behind.

I took matters into my own hands. In the absence of a lift, I took Eoghan in my arms and took him out of his wheelchair.  I carried him up the curving stone staircase. Eoghan was literally quivering with excitement. When I got to the top, I gently laid him down on the stone floor and ran back down to get his wheelchair. Then, I carried it up the stairs.

When I got back to Eoghan, I lifted him back in to his chair and dusted him off. He wheeled himself in among the glass cases. Staring at primates and wolverines shot by the well-heeled Anglo Irish on safari.

Carrying my son in my arms 

When it was time to go back downstairs, I repeated the exercise in reverse. I lifted Eoghan out of the wheelchair and laid him down on the stone floor once more. His seven-year-old sister stood guard over him whilst his older brother took the youngest, hand in hand, down the stone steps.

I carried the wheelchair below and then returned to gather up my son. Eoghan held me tightly as we descended. He kissed me on the cheek and thanked me for letting him ‘see the monkeys’.

4/9/2014 Trains Stations Source: Sam Boal

In the Christmas present, I often bring Eoghan, now aged 13, into the city centre for shopping or maybe a hot chocolate. Like all teenagers of his age, he’d prefer to go into town on his own. Without his Dad, who is frankly an embarrassment at the best of times.

He now uses a power chair and is accompanied by his assistance dog, Duke. So, in theory, he could travel into town. Independently. On his own.  But, it’s not that simple in the Ireland of 2015.

Simple tasks like getting a train

To get the Dart into town, I need to call the station master in Pearse Street train station.  Preferably the night before. I need to tell him what time Eoghan will arrive in Booterstown Station so that arrangements can be made to have a staff member in place to assist with the heavy metal ramp necessary for Eoghan to board the train. The Iarnród Éireann staff are wonderful. They joke with Eoghan as he gets on the train. Due to austerity and cuts to public services, however, there simply are not enough of them to crew all stations.

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Often, the lifts on the Dart line are broken. In those situations, I take Eoghan to the next station and we either walk back home or wait for another train to drop us off on the right side of the tracks. Simple commutes can turn into extended journeys. In these circumstances, I cannot take the risk of allowing Eoghan to travel unaccompanied on our public transport. It is simply not accessible. And yet again, as a disabled child, Eoghan gets left behind.

Like thousands of other children and young adults across the Republic, Eoghan will never live independently. As a parent, I am becoming increasingly concerned for his future. What will happen to him when I die? Who will lift him? Who will hold him? Who will carry him? How will he live a self-determined, happy and fulfilled life?

Austerity has robbed Eoghan and hundreds of thousands of disabled citizens and carers of the basic supports for independent living.

My worries for the future 

Ireland 2015 is a society that relegates the disabled and carers to second-class citizenship and poverty. It is one of the last great equality challenges for this country.

My simple New Year’s wish for the future for Eoghan, and all of his brothers and sisters, is that Ireland becomes a true Republic. A Republic that recognises and vindicates the basic human rights of all of its citizens, able and disabled alike – to include the weakest and most vulnerable. A Republic that is truly able for equality.

That is something that the leaders of 1916 would have been proud of. A Republic where nobody gets left behind.

Dr Tom Clonan is a former Captain in the Irish armed forces. He is a security analyst and academic, lecturing in the School of Media in DIT. He is also an Independent candidate for Senate-TCD Panel. You can follow him on Twitter here.  

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Tom Clonan

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