Tom Clonan: ‘Two years on, my son is still in a wheelchair too small for him’

‘Eoghan’s story is one of the countless’, says Clonan as disability equality campaign launched

Tom Clonan, his son Eoghan (13) and Eoghan’s care dog Duke. Photograph: Cyril Byrne

Tom Clonan, his son Eoghan (13) and Eoghan’s care dog Duke. Photograph: Cyril Byrne

 

According to the Disability Federation of Ireland (DFI), 600,000 citizens are living with a disability in Ireland. Census 2016 is expected to show about a quarter of a million Irish people are carers, the majority of of whom are women. The number of male care-givers is growing; 38 per cent of carers are men, as of the last census.

Despite the huge numbers involved, people with disabilities and their carers are an invisible community. I know this because I am a carer.

My 13-year-old son Eoghan suffers from a rare neuromuscular illness, Pelizaeus Merzbacher Disease. He is a wheelchair user and has a range of physical challenges. His vision is impaired and he suffers from muscle contractures in his legs.

He is intellectually normal and, despite setbacks, he attends mainstream secondary school with his assistance dog, Duke.

In the past five years, due to austerity and cuts to health services and carers, Eoghan has lost many of the supports that allow him to participate fully as a young citizen. His physiotherapy hours are much reduced. He gets minimal occupational therapy support. His speech and language therapy has become almost nonexistent.

Too small

On the 100th anniversary of the 1916 Rising, Ireland is marketed as the “best little country in the world to do business in”. Sadly, it is one of the worst countries in the developed world in which to be vulnerable, weak or disabled.

As a direct result of government cuts to services, my adolescent son is confined to a wheelchair that is too small for him. I raised this issue in The Irish Times in January 2014. I wrote then that inappropriate seating and the loss of other supports was accompanied by a deterioration in the muscle contractures in his legs. The article went viral on social media and trended on Twitter. I got a lot of sympathy from my fellow citizens. But nothing has changed.

Two years later, in January 2016, my son is still struggling with a wheelchair that is too small for him. As a beautiful young man, he is blossoming in so many ways. Sadly however, he is developing a scoliotic curve to his spine that will become more acute as he grows.

As Eoghan’s father, I am at my wit’s end. I have engaged with the myriad of agencies and bodies that deal with disability as best I can. It is a time-consuming, exhausting and bewildering process. As a journalist, I have tried to raise the issue as often as I can in print and broadcast media. None of these efforts have made any difference whatsoever.

Election issue

Today, DFI will launch its DisableInequality.ie campaign to make equality for persons with disabilities a defining election issue for the 2016 general election. DFI are asking Irish citizens who are bearing the brunt of austerity and cuts to services to tell their individual stories of inequality. The aim of the campaign is to “disable inequality” – one story at a time.

Eoghan’s story is just one of countless in Ireland. My aspiration for the Irish Republic of 2016 is that it becomes an Ireland where nobody gets left behind. Eoghan is routinely disadvantaged in his day to day activities in Ireland. In school, there are delays to the supply of the large-print books he requires to access the curriculum. At one point, I was asked by a service provider of assistive technologies to “choose one or two subjects” from the curriculum for Eoghan to access. I was enraged and upset. Why should I be forced to make this decision? My son is different through no fault of his own. He is routinely discriminated against in an Ireland that does not recognise the basic and inalienable rights to equality and autonomy for citizens with disabilities.

Lifts out of order

As a teenager, Eoghan cannot rely on public transport due to cuts in public services. Our local Dart station does not have sufficient staff to provide ramps for him on a daily basis. Whilst the Dart staff are wonderful in their support, they cannot provide the continuity of staffing necessary for Eoghan to travel safely on his own. The lifts at Dart stations are also routinely out of order, leaving Eoghan stranded on cold, wet platforms. I get upset, angry. He tells me, “Its okay dad”.

A final straw for me was in visiting the Natural History Museum in Dublin with Eoghan. With no lift, I had to carry my son up the curved stone staircase to the first floor. I had to lay him on the ground at the top of the steps and run back downstairs to retrieve his wheelchair. Just so that he could see the primates and wolves in the glass cases. Just to be like his brothers and sisters and all other children of his age. As I carried Eoghan down the stairs in my arms, he kissed me and thanked me for letting him “see the monkeys”.

Like DFI, I have had enough of inequality for disabled children and adults in Ireland. As a journalist, father and carer, so have I. Tom Clonan (TomClonan.ie) is running as an independent candidate for the Senate on the Trinity College Dublin Panel. He is running to “transform the narrative around disability in Ireland”.

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