'When I'm dead, who'll take care of him?'- Irish dad opens up about the worries facing parents of disabled children
Former army officer Tom Clonan wants to be a senator. He tells Joy Orpen he can see no other way to help his much-loved son Eoghan, who daily suffers the indignity of being discriminated against, because he has a disability
Having grown up in north Dublin, Tom Clonan did a degree at Trinity College, before joining the Irish Army. Initially, he was part of a group providing armed support to the police. "Ireland was a security and economic basket-case at the time," he says. "I wanted to help make this country a better place."
In 1996, he witnessed terrible carnage during the conflict between Hezbollah and Israel in Lebanon. "We acted as human shields and spent our time collecting bodies from bomb sites," says Tom. "The killing culminated in the shelling at Qana, which Osama Bin Laden later cited as one of the main reasons for attacking the US." Just a few days after his return from Lebanon, Tom found himself wandering down Grafton Street with his girlfriend; a most surreal juxtaposition of realities.
During the last four years of army service, he did a doctorate, which looked at the experiences of women in the Irish Army. "Of the 60 women I interviewed, 59 reported incidents of sexual harassment," he explains. "That made me a committed feminist."
Shortly after, Tom retired from the defence force, he married and became an academic. Currently, he teaches media studies, while writing and broadcasting about security issues.
Soon after his marriage, sons Darach (15) and Eoghan (14) arrived on the scene. In 2003, they suffered a terrible tragedy when their daughter Liadain suffered a cord accident and died at birth. "We buried her in the Little Angels plot in Glasnevin Cemetery," says Tom. "It forced me to confront my experiences in Lebanon. You can only understand that kind of ordeal when you have kids."
Eventually, daughter Ailbhe (11) and son Rossa (8) completed the family. In mid-2003, Eoghan, who had been meeting all his milestones, began to regress. "From that point on, we entered that world of special needs, tests and examinations," Tom says. "They did nerve conduction tests; inserted probes into his muscles, and did other painful and invasive procedures."
Eventually Pelizaeus-Merzbacher disease (PMD) was diagnosed. This is a rare, progressive condition, which affects the central nervous system. As a result, coordination, as well as intellectual and motor function, may be compromised.
"Eoghan's upper body, his limbs, his eyesight and speech are all affected," Tom says. "However, intellectually he is very bright, and is in mainstream education." Today, Eoghan is in first year at secondary school; he is escorted there by Duke, his assistance dog. His parents have converted one of the downstairs rooms in their modest south Dublin home into a cheerful, self-contained space for Eoghan.
There, he is surrounded by all the things that interest him; Lego, various mechanical constructions and books are piled on the desk and shelves. The rest of the ground-floor rooms, as well as the garden, are wheelchair accessible. So Eoghan is as comfortable as possible. Nonetheless, Tom worries about his special son - all the time.
"When I'm dead, who'll take care of him?" Tom says that he asks himself this question, as he lies awake at night. "Who'll help him get up at six in the morning and stretch his limbs while he's still warm? Who'll help him shower and get dressed before he heads out the door?" he says. "I have to ask this, because right now, all the supports in the community have been eroded by austerity measures. How will my son live in the Republic? There is no appropriate setting for people like him. This is a great little country to do business in, but if you're disabled, it's the worst."
Tom says that since the collapse of the Celtic Tiger, Eoghan has lost most of the services he so desperately needs. He gets a little bit of physio and occupational therapy, and no speech therapy at all. He's outgrown both his manual and power wheelchairs.
Tom says that because of his disability, Eoghan faces discrimination and marginalisation on a daily basis. If he wants to go into town, they have to phone the Dart station in advance, to arrange for a ramp at each end. Then the possibility exists that the lift won't be working, leaving him stranded.
Recently, Eoghan needed large-print books for school but was told he could only get half of them, because of budget cuts. That made Tom's blood boil. "Imagine saying to a Muslim or a gay person, you can only have half of the curriculum, because of your religion or sexual orientation. Yet, because Eoghan is disabled, he faces gross discrimination on a daily basis. I want to make it unacceptable for any politician, or anyone else, to deny a disabled child access to movement, education or happiness."
That is why Tom has decided to stand as a candidate in the upcoming Seanad election. He says his only motivation is to try to help secure a decent future for his son, and for all the other people living with a disability in this country. "I have spoken to various groups, and all say the Minister for Health tells them the same thing - that there's no money about. Yet, there was money to put [water] meters outside every house," he says.
Tom continues, "In the name of austerity, disabled children and carers were cruelly targeted. A moratorium on recruitment saw the loss of vital specialists such as physio, occupational and speech therapists. Carers were also targeted with cuts to respite-care grants; special-needs assistants and learning-support hours in schools were decimated."
Tom says what is missing is the political will to transform the narrative around disability and equality. He says he's been talking about this issue for the past six months, and not one single politician has offered to help.
"As army officers, we put our lives on the line as an expression of our citizenship. The current political class has forgotten all about service. All they're interested in is personal power. You can devolve authority, but you cannot devolve responsibility. I would challenge the acting Minister of Health, Leo Varadkar, to look Eoghan in the eye as he sits in his too-small wheelchair, and explain austerity to him."
Tom adds: "As his father, I have exhausted every avenue open to me. It is unbearable to see him suffer and to worry for his future. That's why I'm running for the Seanad and why I'm asking Trinity graduates to vote for me, so I can fight for the rights of our disabled brothers and sisters. I want to stand up for brilliant young men like Eoghan, who have to endure the indignity of living a painful life in a wheelchair that is too small, who, through no fault of their own, cannot live freely like other young people.
"Eoghan is routinely and grotesquely discriminated against on a daily basis. I want to put a stop to that."
For more information see, tomclonan.ie
Sunday Indo Life Magazine