Dr Tom Clonan: Confined to a wheelchair that's too small for him, I can't look my son in the eye
No parent should have to fight so hard to give their child the life they deserve, writes Dr Tom Clonan
Published 13/12/2015 | 02:30
I served as an army officer from 1989-2000. The Irish Army taught me a lot about myself. According to Defence Forces doctrine, in any conflict we would fight as underdogs. Therefore, we were taught to fight for ourselves and for each other. The message was simple, "Leave no one behind". Survival in adversity meant sticking together and supporting the weakest. It is a concept that has remained with me.
I served in the Middle East during the Israeli 'Grapes of Wrath' offensive in south Lebanon in 1996. During the thousands of air strikes and ground attacks of that punitive operation, we acted as human shields for the civilians trapped between Hezbollah and the Israeli military. Hundreds of innocent men, women and children were slaughtered in the fighting that followed. As Irish troops, we gently handled the broken bodies of children and the elderly alike, digging them out of collapsed houses and returning them to their loved ones. Like so many Irish veterans, I consoled myself with the idea that although we couldn't prevent all of the killing, we saved hundreds of precious lives.
It was an object lesson about society. About man's inhumanity to man and about what it means to be a citizen of the Irish Republic. Our oath of allegiance to the Irish Constitution mandated us to protect the weak and vulnerable.
I retired from the Defence Forces as a captain in December 2000 on the birth of our eldest son, Darach. Our second son, Eoghan, was born in 2001. Inseparable, the boys played and developed alongside one another.
As an infant and toddler, Eoghan achieved all of his developmental milestones. He bum-shuffled around the house and began to stand and walk, his dirty little fingerprints marking his progress along the walls. At 18 months, Eoghan floundered. He developed a slight tremor in his pudgy fingers. A faint flickering or nystagmus in his eyes. He stopped walking and lost function in his lower limbs. We were terrified.
In spring 2003, we began a journey thousands of other Irish families have taken into the heart of Ireland's medical and disability services. Throughout the most painful and invasive of investigations that followed, including lumbar punctures, muscle biopsies, MRI scans and nerve conduction tests, frontline medical staff handled Eoghan with loving care. Eventually, we got a diagnosis of Pelizaeus Merzbacher Disease or PMD - a rare neuromuscular disease that attacks the nervous system. As the disease progressed, Eoghan steadily lost motor function. His speech and eyesight were also compromised.
In the shock and grieving that followed, the prognosis for Eoghan's development and survival seemed bleak. In the spring of that year, we faced other challenges. I lost my mum to cancer. We also lost a precious daughter, Liadain, in the final stage of pregnancy. Unlike all of our other births, Liadain's was completely silent. Not long after, my beautiful sister, Pauline, was diagnosed with breast cancer. Despite a brave and heartfelt struggle, she did not survive. Throughout all of these traumatic experiences, one of the few consolations was the kindness and empathy shown to us by the frontline nurses and doctors who dealt with us and our loved ones.
As a small boy, despite his challenges, Eoghan continued to grow and develop as a little person. He endured most of his medical interventions, however painful, with good humour and smiles. Sometimes his procedures were without anaesthesia or sedation, and he would cry silently, fat tears rolling down his cheeks. All we could do was hold him. But, above all, Eoghan showed us he was a fighter, and as his parents we needed to fight for him, to ensure he was not left behind.
So we fought for Eoghan. In Ireland, we learned that as parents of a child or young adult with a disability, you have to fight, for everything. As he grew, we fought for the ongoing supply and replacement of his wheelchairs and ankle-foot orthoses. We fought for the basic physiotherapy, occupational therapy, speech therapy and hydrotherapy that were essential for Eoghan's development.
We fought to get Eoghan into mainstream education and he thrived in the warm and dedicated environment of St Mary's BNS, Booterstown. He was welcomed to the homes of our wonderful friends and neighbours on playdates and birthday parties - just like every other little boy.
Eoghan now has two brothers, Darach (15) and Rossa (8), and a sister, Ailbhe (11). Three years ago our family had a new addition with the arrival of a Golden Retriever named Duke. Duke is an assistance dog from Irish Dogs for the Disabled and his presence in Eoghan's life has been transformative.
On a physical level, Duke helps Eoghan to get dressed and undressed. In a form of natural physiotherapy and play, Duke takes off Eoghan's socks and trousers and helps him into his pyjamas. In day-to-day activities, Duke opens doors for Eoghan and retrieves anything he drops from his wheelchair - a pen, a piece of Lego, or, more recently, his mobile phone.
On a psychological and emotional level, Duke has had a major impact on Eoghan. They are inseparable best pals. When Eoghan is out and about, people approach him all the time to ask him about Duke. The dog makes Eoghan's wheelchair invisible. He helps Eoghan to live independently and to go from A to B on his own. I remember the day Eoghan and Duke headed off to the shops on their own for the first time. A small journey for most 11-year-olds. A giant leap for Eoghan and Duke.
Eoghan has now progressed to secondary school. He has just finished his Christmas exams and got an A in Classics. We are exceptionally proud of him. But despite our efforts and Eoghan's, the past five years of austerity have robbed Eoghan of most of his vital services. Due to government cutbacks, for the second time in two years Eoghan is in a wheelchair that is too small for him, and his physiotherapy, occupational and speech therapy sessions have dwindled to almost nothing.
Our teenage children now discuss their dreams and ambitions for the future as we sit around the table at dinner. Eoghan has told us he would like to be a scientist. I look at him, confined to a wheelchair that is too small for him. A 13-year-old boy who is developing a scoliotic curve to his spine and contractures in his legs - conditions exacerbated by a lack of simple therapies and the right supports. I do not know what to say to him. I cannot look him in the eye.
Eoghan will never live independently. When I die, I despair of where he will live. Will he be housed in an institution or "congregated" setting by the Department of Health? Will such settings even exist with the ongoing underfunding of health and disability? I'm terrified Eoghan will be warehoused in a nursing home or some other inappropriate environment.
As a parent of a vulnerable child and as a citizen of this republic, I recoil from the actions and attitudes of our political class with regard to disability and the most vulnerable in our society. I recoil from the notions of charity and second-class citizenship afforded them by successive governments.
As Eoghan's father, I have exhausted every avenue open to me to fight for his future. I believe that the conversation about disability needs to be radically changed in Ireland - and changed utterly. As a starting point, I am running for election to the Seanad as an independent candidate on the Trinity College Dublin (TCD) panel. I will be asking my fellow TCD graduates to vote for equality for people with disabilities as a vindication of their basic human rights to live self-determined, autonomous and happy lives.
Now, on the 100th anniversary of the 1916 Rising, we need to imagine an Irish Republic where no one gets left behind. If elected by Trinity graduates to the Seanad, I will take the fight for the basic human rights of people with disabilities to the heart of government and revolutionise the narrative on disability in Ireland. I would ask my fellow citizens and TCD graduates to vote for me in this fight and to be truly able for equality - for all.