By Elizabeth Doherty
“I cannot look my son in the eyes if I did not try absolutely everything,” are the simple yet powerful words of Dr Tom Clonan as he fights for equality for the disabled, for his own child and for a seat in the Seanad.
The former Irish Army Captain-turned whistleblower, turned Irish Times security analyst, and now independent candidate for the Seanad, is, above all those titles, father to 13-year-old Eoghan, a blue-eyed, quick witted child, who suffers Pelizaeus-Merzbacher Disease.
PMD is a neuromuscular disorder affecting the central nervous system. Eoghan is clinically blind, in a wheelchair and he needs physio, provided by his father, every day at 6am.
The teenager, who has the normal dreams and wishes of every schoolboy his age, is stifled though, not just by his disability but by the way this state treats the disabled.
My son is in a wheelchair that is too small for him because of the waiting list for a replacement. He is getting a curvature of the spine because of the wheelchair and the lack of professional physio he has.
Since 2008, with the dawn of the economic crash, Eoghan, like thousands of disabled children and adults lost some of the vital services he needs. The disabled became societal casualties as the Government slashed services to repay bank debt.
The teenager requires an hour of physio a day, yet even during the Celtic Tiger, he was normally provided one hour a week over a six to eight week period, four or five times a year.
That has now been reduced to 30 or 40 hours of physio a year.
“As his dad, knowing the challenges that confront him, I don’t know how to describe that,” Tom said.
This is the only moment while talking of his campaign, that Tom looks genuinely at a loss for words. His eyes momentarily stare into the distance in this Dublin hotel restaurant.
“Because of those cuts, the lack of resources, it is likely Eoghan will have to have a surgical intervention … because he doesn’t have a proper size wheelchair, or enough physio.
“The general anesthetic, the pain, he may have to go through – it is such a inhumane system.
I think it’s time to bring this issue out into the forefront.
We need to say yes to equality for people who are different, for those with special needs and disabilities, to allow them to realise their full potential.
Days before this interview, Tom received an email about textbooks Eoghan needs for his Junior Cert. The books must have large print because Eoghan is medically blind.
The email left the father reeling. There are flashes of a subtle anger that fill his voice. But this is not a new emotion for a man caring for a disabled child in times of austerity.
“I was told I could pick the four books he needs most and that they would get back to us and maybe next year, they will see if we can get some more.
“If you were to say to a young person because you are black, gay, a Muslim, we will give you four textbooks and come back next year and we’ll see if we can give you more, the country would be up in arms.
“Yet it seems commonplace to treat a disabled young person that way.”
It appears to be frustration with a dash of anger that has driven Tom, who previously exposed bullying and sexual violence in the armed forces – to stand for election to the Seanad.
As he talks, there is a clear sense of justice and civil rights entwined in his ideology. But at the core of all he says, is love, devotion to his young son.
The former soldier has watched as the Irish state has cut services to the disabled since the crash of 2008. And he has become increasingly disillusioned by the Government as it slashed the incomes of working people.
As his son is confined to a wheelchair that is too small to carry his teenage frame, Tom is striving to make positive change in Irish society via politics, to help others enduring the same torment.
He hopes to unseat either Labour’s Ivana Bacik, David Norris or Sean D Barrett from the Seanad’s Trinity panel.
For Tom, the Seanad is the obvious place where he can bring about change. After all, it was there where the political will was roused to help push for the same sex marriage equality law.
“Irish people were able to back our gay brothers and sisters and give them marriage equality. Now all I ask is that disabled people are given equality too,” Tom said.
“I have no political connections, I’ve never been the member of a political party and I’m not a member of a political dynasty.
My primary motivation for getting involved in the Seanad is my son, who has in the years since the crash, and with all the slashes to health, had all his services cut.
And we are not alone. We are one of thousands of families enduring these cuts. I want to be their voice.
Eoghan is in his first year of secondary school. He is a “bright” boy, his father says, but when Eoghan speaks of dreams of becoming a scientist and moving out of his parent’s home – Tom feels at a loss. He cannot imagine such freedom for Eoghan in the Ireland of today.
“I can’t tell my son where and how he is going to live, because of the way things are in Ireland. He will never be able to live independently,” Tom said.
When I die, I don’t know what will happen to him. Special needs supports to enable people to live independently in this country are gone. The idea he might be warehoused, living in a care centre, is horrifying.
“That what’s happening in Ireland. Young adults with disabilities, are being put into nursing homes. People in their 20s. There is nowhere else for them. All the supports in the community have been taken away by austerity – it’s a very bleak picture.”
In 2013, The Irish Times documented a case where a young woman with disabilities was offered a place in a nursing home.
Siobhan Powell, 29, who is physically and intellectually disabled, unable to speak and who uses a wheelchair, was expected to live in a full-time nursing home in Wexford. Her family, were, understandably, angered.
The Carers’ Association said at that time, this was only one in a rising number of cases where inappropriate residential options were being provided due to cutbacks in the healthcare system.
“I can’t do anything for Eoghan as a journalist or academic, so this is a roll of the dice for me, to see if I can do something for my son, and all the disabled and carers across the country,” he said.
Being disabled in Ireland is pretty f***ing grim. It’s not a country to be disabled, to be sick, homeless, or to be a single parent in.
“If you’re in any way vulnerable and outside a very conservative understanding of what is normal, then you’re in trouble.
“Even at the height of the Celtic tiger, services were hard to access. There was never enough physiotherapy, speech therapy, so on, and when the collapse came and the Government made the decision to pay the debt made by reckless banking, those services all but disappeared.
“Frontline doctors, nurses, Temple Street, are wonderful, but the resources have been decimated.
“I’m angry and frightened. I watch my son growing up. He’s a great fella, with a great personality. He is full of love and optimism and I don’t know how to tell him that life in this country, if you have a disability, is pretty bad.”
Tom has no campaign team to speak of. He uses Twitter to deliver his message. He is rapidly becoming a voice for the disabled and if unsuccessful in gaining a Seanad seat this time round, he has committed to continuing his campaign.
And his son is there gently encouraging him as he battles the powers that be.
“I asked Eoghan about my campaign because he is part of my decision to stand. I asked him if he was happy to be part of it, for a photo of him and his dog, Duke, to go up on Twitter, to be a central focus,” he said, briefly smiling.
“Eoghan told me he was happy to do that. He was supportive. Intellectually my son is a very bright boy. He knows he is an wheelchair that’s too small for him. He can’t wait to get one that’s bigger.
“My son knows things are not right. He’s not stupid. There is no political will to improve services for disabled people, for my son to have a wheelchair he fits into, but there is political will to put a water meter outside every home in the country.
As a father, I couldn’t look my son in the eye if I did not try absolutely everything I possibly could to try to change this situation.
“I hope when he’s older he understands. The chance of me being elected is slim to nil but i’m trying. And I am getting the chance to raise the issue and to empower people to speak up.
“I’ve no team, no resources, I just have this thing pushing me. I want to fight for the better treatment of disabled people in this country.”
Eoghan was around 12 months old when his father began to notice slight changes, with a subtle tremor in his baby son’s hands, a little flickering in his blue eyes.
After numerous visits to specialists, Eoghan was diagnosed with the rare neuromuscular disease. He requires constant physiotherapy, occupational therapy, and speech therapy, but Tom says not enough is provided for his needs by the state.
“I see him as a little guy starting in secondary school, who’s only 13. He should have the same chance as other kids his age – but because of the cuts to services, all the little gains and functions he had achieved, have been eroded.
“It’s making things a lot harder for him. His sister talks about her future and I can listen and imagine her dreams coming true, but because of the state of this country, I can’t for Eoghan.”
Tom carries this pain with him as he talks. It is almost etched on his face at times when he pauses to think of the hardships he says are forced upon a child, his child.
As a father and a carer, Tom blames the Government for the lack of services and assistance available to his son and to the thousands of disabled children and young people across Ireland.
He is convinced there needs to be huge political change in this country in order for the most vulnerable in society to be treated with dignity and respect.
There has been a period marked by intellectual and ethical failures since the Celtic Tiger.
Those failures persist today in the language round austerity.
“Ireland is still ruled by a political class and even the vast majority of political correspondents, talk about Ireland as an economy, not a society.
“The new priesthood are the economists. They are the Irish celebrities now. They talk about the economy. They don’t talk about social impact.
“Until as a society, we start to talk about ourselves in societal terms and our aspiration is that no one gets left behind. Until we reach that point, we will never recover from the Celtic Tiger, or austerity.
“We can only do that if we pull together. We need to get rid of the economists and start listening to philosophers and to people.
“When the current Government, Fine Gael and Labour, were formed, we were promised reform in the political system and in the Seanad, but then our Taoiseach openly sought to put one of his pals in to the Seanad and it was done very openly and brazenly, which makes you wonder about the kind of corruption and cronyism that goes on behind the scenes.
“Another and an overarching problem with Irish politics, by international standards, is that our system is extremely sexist. It is overwhelmingly dominated by white men. It is a sexist, patriarchal system at heart.
“Most of the carers in our society are women, and single parents, in the majority, are women. Women are the vulnerable ones in Irish society and the ones left to do the lifting and that’s because most of the policies and political decisions are being made by a whole pile of fat men, in their 60s and 70s.
I’m not ageist, but if you have a cabinet of mostly men, who are older, you have a problem.
Tom is hopeful that as a former Trinity College student, the university’s panel will back him for the Seanad. He is also optimistic that Irish society will view this, disability rights, his main motivation to enter politics, as an equality issue they can support.
“Before my son developed a disability, I knew nothing about special needs. Suddenly we were confronted with the idea that his life was going to be different to what we imagined.
“We went through a period of fear for the life he would have. The more I think about the Yes equality campaign, the more I think this is an equality campaign too.
“Young adults with disabilities deserve to participate in society the same way gay, straight, transgender, people do.
The country can get behind marriage equality and this is an equality issue, so the country can support this issue too.
“I want to raise awareness of disability, just like the marriage equality campaign did. People wouldn’t be voting for me so much but they would be voting for an idea that everyone with a disability, kids, carers, everyone, deserves equality and to live a good life, to have expectations, to have potential and participate.
“It’s not about charity and handouts. This is about fundamental human rights, the right to an education, the right to be loved and live in a community and be part of that community and those rights are being taken away.”
Like every parent, Tom has “hopes and aspirations” for his four children, and Eoghan is no different, but he admits “When you have a child with special needs, it’s very complicated because the state puts obstacles in the path of progression.
“It’s enough to deal with the disease and finding therapies and being a carer, but having to fight the state itself, for everything from wheelchairs to textbooks, it’s exhausting.”
Despite his son’s situation, Tom says he is “very lucky” to be in a position to be able to articulate on Eoghan’s behalf. And for the time being he is content to have an audience willing to listen.
“But there are thousands of carers across the state with no voice, trapped in a situation, and it’s very hard for them to get out to lobby,” he said.
For Tom, politics was not a career option he had ever considered. He admits he merely wants to utilise a position in the Seanad to “affect positive change for people with disabilities.”
But to achieve that, he has to reach the constituency of Trinity graduates and “hope they support me.”
“I was privileged enough to go to Trinity and I know in my heart and soul other Trinity graduates would share my view,” he said.
“I can’t think of anyone who would deny a child, a young adult, this equality. I hope Trinity graduates vote for me as the right thing to do, to help the disabled enjoy some of the opportunities they have.”
It’s clear that though he may have left the armed forces and even lifted the lid on the uglier side of the military, Tom Clonan has not left the battle behind him.
“Eoghan at one point was able to crawl, to climb in and out of his wheelchair. He can’t do that now. Some of that, I feel, is down to the lack of services he is receiving,” he said.
As he gives his battle cry for the sake of his son, before he makes his way home to spend time with his family, it seems very believable that if there were more Tom Clonan’s in this country, the political system might represent a fairer society.
I’m a whistleblower, a former soldier,” he said. “I am prepared to go into the Seanad and bring the fight for disabled people and equality. To bring the fight for my son.