THE MAN ON the radio says: ‘Taoiseach Leo Varadkar wants to lead a country for people who get up early in the morning.’ ‘Is that us?’, my son asks me. Eoghan is 15 and suffers from a rare neuromuscular disease.
Indeed, it is early in the morning. 6am in fact. Each morning at this time we do about forty minutes of stretching and DIY physiotherapy on Eoghan’s bed. By my reckoning, Leo Varadkar is probably still asleep, an hour before he reportedly “heads to the gym”. Bully for him.
The reason we do this at 6am is because we are a busy family with three teenagers and an energetic nine-year-old. Ours is a household with four school runs and two working parents juggling a frantic daily routine. There is literally no other time in the day for me to do this workout with my precious son. However, there is another reason for this pre-dawn DIY physiotherapy.
Services have been decimated
It is because services and supports for children and adults with disabilities have been decimated over the past ten years due to so-called austerity measures. Since 2011, as a member of Cabinet, Minister for Health and now Taoiseach, Leo Varadkar has signed off on every cut to health services and supports for the disabled and carers.
As a consequence, Eoghan, and thousands of children and young adults like him have little or no access to meaningful physiotherapy, occupational therapy or speech therapy.
Front line medical staff – consultant neurologists and surgeons in Temple Street, Crumlin and elsewhere – make heroic efforts to meet the growing demands placed upon them by chronic underfunding and catastrophic recruitment difficulties. Ireland now has amongst the lowest ratio of hospital specialists per head of population in the OECD.
Likewise, in the Central Remedial Clinic, the front line physiotherapists, occupational therapists and speech therapists try their best to support a growing number of families like ours. Like other areas of health, the disability sector is in deep crisis.
Eoghan is a beautiful young man
When I work with Eoghan in the morning, I flex his legs, knee and ankle joints. We also work on wrists, elbows, shoulder and neck exercises. It is a labour of love.
As a wheelchair user Eoghan is developing a very pronounced scoliotic curve to his spine. The neuromuscular disease has compromised his eyesight also and he has a number of other challenges including nystagmus in his eyes and intention tremors in his hands and fingers. The stretches help us with the muscular contractures in his legs. They help him to sit up straight for a long day in secondary school, preparing for the Junior Certificate.
Eoghan is a beautiful young man and at 15 is blossoming – like all adolescents – into an adult in his own right. Like all teens, his identity is a work in progress, an incremental, ongoing negotiation. ‘Eoghan’ is how he describes himself. ‘I am Eoghan.’
Different, is how he is. Like all young people –whether they be straight, or LGBTI – Eoghan is aware of his identity, and of his difference. He accepts his difference, his uniqueness. He self identifies as such and regards himself as Eoghan. Lego enthusiast. Fan of House of Cards.
Ireland labels Eoghan “disabled” and has disabled him
However, Irish society has labelled Eoghan “disabled”. Adding injury to insult, Ireland has in turn disabled him. Ireland’s neo-liberal State – Leo Varadkar’s so-called “Republic of Opportunity” – sees Eoghan exclusively as a liability. His difference is constructed as “deficit”. As a citizen, Eoghan is of no value in a republic that is considered primarily an “economy” by its current vulgar and crass political elite.
Eoghan is beginning to internalise his status as a second class citizen in our Republic. I first became aware of this during a discussion of his Classics syllabus for the Junior Cert. Eoghan remarked to me, ‘I could not be a God in ancient times. Because I’m disabled. I wouldn’t be allowed.’
In that simple statement, my son articulated the manner in which Irish society disempowers and actively discriminates against those of its citizens who are different by way of physical or intellectual need. Irish society discriminates against my beautiful son in a myriad of ways every day, from simple and casual barriers to self actualisation, to profound, brutal and frightening instruments of oppression.
For example, to travel to the city centre like any other teenager, Eoghan must contact Pearse Street station at least 24 hours in advance in order to arrange for a staff member to be present at his local Dart Station with a ramp. Very often he has been stranded in Dart stations where the lifts have broken down. This is not the fault of individual Irish Rail staff – it is a consequence of cutbacks to the staffing of a vital public service.
‘It’s all right, Dad’
On our recent family holiday to Spain in July, Eoghan was stranded for over an hour on the Aer Lingus flight when it touched down in Barcelona. Apparently, his wheelchair “had gone missing”. He watched as all of the other passengers disembarked. He watched as buggies were brought to the aircraft door for younger passengers.
He alone – and his siblings – had to wait on the aircraft for over an hour until, eventually, his wheelchair was “recovered”. The Aer Lingus crew were polite but shrugged their shoulders, ‘Not our fault’.
Eoghan is a polite boy. Full of grace. ‘It’s all right, Dad,’ he told me when we eventually exited the deserted airport, long after midnight.
As Eoghan gets older, and as I get older, I sometimes wonder at six in the morning – who will do his physio and stretches when I die? Who will hold him and lift him? Who will dress him in his favourite Leinster Rugby top and A&F tracksuit bottoms? Who will look after his most intimate care needs? What kind of hands will be placed upon him?
Too frightening to contemplate
I have always tried to resist this thought pattern. It is too heartbreaking. Too frightening to contemplate. As a parent. As a father. To be terrified about what will happen to my son after I die. Because I’ve seen the signs. In the casual and callous indifference displayed toward him by the most powerful sectors of Irish government and society.
I also fear that the real answer to this question has been revealed this week. No fewer than 1,222 adults with disabilities – under the age of 65 – are confined to nursing homes across the Irish State. Words cannot express my horror, despair and anger at this phenomenon.
Men like Micheal McGealy – effectively imprisoned in a nursing home for the last nine years. In his own words, Michael states that it feels like he has “lost” nine years of his life.
Senator John Dolan, CEO of the Disability Federation of Ireland, observed yesterday that this phenomenon is “alarming” but “not surprising”. Two years ago, in August 2015, Senator Dolan told RTE that the same situation was a “scandal”.
I’ve had enough
Personally, I’ve had enough. Ireland is the only member state of the EU that has not signed the UN Convention on the Rights of People with Disabilities. Would Irish men and women tolerate a State that detained citizens on aircraft because of their sexuality or sexual orientation? Would Irish citizens tolerate a system that demanded 24-hours notice of travel of the LGBTI community? A State that confined over a thousand LGBTI citizens to an Irish style gulag archipelago of nursing homes? No. So, why impose this on the so-called “disabled”?
I say no more polite lobbying for the “disabled”. We need a radical transition to a rights-based approach to the rights of our fellow citizens who are disabled by a discriminatory State. I’m up for the fight. I would ask all of our citizens, including the LGBTI community, to support us in this fight.
In other words, as a father to a boy who is different, I am asking my fellow citizens to support a call for a Yes Equality campaign for our brothers and sisters disabled by a State that actively discriminates on the basis of physical and intellectual need.
Is Leo Varadkar – Taoiseach for those who “get up early in the morning” – prepared to vindicate the rights of early risers like my son?
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 in DIT. You can follow him on Twitter here.
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