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Republic of equals? My son, on a waiting list, twists in a wheelchair too small for his body

Austerity and spending cuts have made second-class citizens of people with disabilities, writes Tom Clonan.

Tom Clonan Security specialist and columnist, TheJournal.ie

I’M A PARENT of four children.  Three boys and a girl. Four little Irish citizens with hopes and dreams – just like other kids all over the country.

But one of my boys is a second class citizen. He lives in a parallel universe that is virtually invisible to the rest of Irish society.

Let me explain.

Eoghan is 14 years old. He is a beautiful boy, blossoming into a young man.  Unfortunately, however, Eoghan is different. He has a neuromuscular disease. He is a wheelchair user and is partially sighted. He has an assistance dog called Duke.

Eoghan and Duke are partners. They go places together.  I’d like to say they go everywhere together – but they cannot. They are excluded from a lot of places in Ireland. Here is just one small example.

Due to cuts in public spending, Eoghan cannot travel on the Dart safely. As Eoghan’s carer, I have to call the station master in Pearse Street train station 24 hours in advance of any trip to ask for assistance with ramps at our stop.

This is because Dart stations are no longer crewed at all times.  Iarnród Éireann staff are lovely – but there are not enough of them.

Even with the phone call, there is no guarantee that anyone will be there to help with the ramp. Eoghan could get stuck on the Dart at his destination.

Or, as often happens, he could be stranded in a Dart station with a broken lift. This means I have to travel everywhere with my teenage son.

To quote the great Rory O’Neill, aka Panti Bliss, it feels oppressive. My son cannot safely navigate the broken and uneven streets of Dublin.  I have to accompany him everywhere.

And, just like Panti Bliss, at pedestrian lights – I check myself.  I am a middle-aged man who must escort his teenage son everywhere in an Ireland. That is simply not accessible.

Endless waiting lists

Like all teenagers, Eoghan is embarrassed at having his dad with him.  It feels oppressive for the two of us.

When I get him to wherever he is going, to mix with other teenagers or friends, I hang back – to help him feel autonomous and independent. I check myself. And I hate myself for that.

I hate that Eoghan has been denied most of his vital therapies such as physiotherapy, occupational therapy or speech and language therapy.

I hate that he is confined to a wheelchair that is too small for him. And like Panti Bliss, I despair at the sight of government politicians who say that they are making the “tough decisions”.

download (1) Eoghan with his assistance dog Duke

I despair at those who actively decide to treat my son as less than equal. I despair at those in cabinet who deprive him of his rights. The same government ministers who say to camera – without blinking – that my son must pay the price for the gambling debts of bankers and developers.

Like Panti Bliss, my son and I know only too well what it is like “to be put in your place”.  That place is on a series of endless waiting lists. And, like Rory O’Neill’s experience, it feels oppressive. And it hurts.

Over 10,000 children and young adults with physical and intellectual disabilities have been waiting over 12 months for basic therapies such as speech and language therapy or physiotherapy.

All of the services and supports for children with disabilities and medical challenges are in disarray.  To paraphrase Panti Bliss, this has made me an “accidental” activist for the rights of children and adults with disabilities.

Invisible community

My experiences as a father and a carer have led to my decision to run for the Seanad on the TCD panel. I have spoken repeatedly over the last six months on national radio, television and in all of our newspapers about the appalling conditions that afflict children and young adults who are different by way of physical or intellectual challenges.

I have spoken openly about the fact that my son is developing a scoliotic curve to his spine.  To see him twisting in a wheelchair that is too small for him is heartbreaking.  To hear him tell me that his back or his hips hurt is unbearable.

Like Panti Bliss, I have to check myself.  I try not to hate myself for being unable to help my son – for being powerless.  I lie awake at night and fret about what will happen to my son when I die.

And over the last six months, not one politician or public representative has offered to help. Not one has even asked if they can help. Because I belong to an invisible community that is firmly in the closet. I am one of 240,000 carers in Ireland.

My son is one of the 600,000 Irish citizens who are disabled – whether they be children or young adults with acquired brain injuries or elderly people struggling to live independently and with dignity in their own homes. Due to austerity and cuts to health and services, we have become second-class citizens in our own republic.

The only positive thing about this Seanad race has been the warmth and support of ordinary Irish citizens. Not the elected representatives who have shown themselves to be almost utterly indifferent to our plight, but ordinary people. Neighbours. Strangers I have canvassed.

Other parents of children with special needs have approached me in the last few months.  Parents of children with spina bifida, Down syndrome and autism are in precisely the same situation as myself.

Last year, hundreds of thousands of Irish citizens did the right thing for our LGBT brothers and sisters by voting for marriage equality. Let’s hope that this year marks the beginning of a political movement to vindicate the rights of the disabled and their carers.

I want to live in an Ireland where I no longer have to check myself.  Where it no longer feels oppressive to be a carer.  Where it no longer hurts to be disabled.

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 at DIT. He is also an Independent Seanad candidate for the TCD panel. You can follow him on Twitter here.   

Read: FactCheck: Is Fine Gael right to say it has “maintained disability spending”?

Read: ‘My son will never live independently. I fear for his future when I’m dead’

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About the author:

Tom Clonan  / Security specialist and columnist, TheJournal.ie

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