As part of the Change a Little Change a Lot accessibility campaign to raise public awareness of disability, a series of Open Letters have been written by people with varying degrees of disability. In this piece we hear from 29-year old Stephen Cluskey from Swords who, after a freak accident, was left paralysed from the neck down. Here Stephen recounts his story and gives us an insight into life with a disability.
IT WAS 4 August, 2002 and a day which changed my life. The weather was glorious, the Dubs had just drawn in the quarter finals of the All-Ireland against Donegal and life couldn’t have been better. Little did I know that a couple of hours later I’d be in the back of an ambulance on the way to the Mater hospital after falling from a bale of hay.
The accident took me down a road which I had never envisaged. I always thought serious accidents like this happened to ‘other people’ and at 18 felt invincible, like everyone else at that age I suppose. Unfortunately this was not the case and I had broken my neck. I was going into sixth year in Belvedere College about to start the Leaving Cert but instead spent the next year and two months in the National Rehabilitation Hospital in Dun Laoghaire. It was a tough time no doubt but was made so much easier with the great support of family, friends and the staff at the hospital who did everything they possibly could to ease this almost unimaginable situation. In times of trouble and despair the amazing kindness and generosity of human beings really shines through.
The news each day is polluted with bad stories about corruption, murder or sensationalism about a celebrity who did this or didn’t do that and the decency of humanity gets very little coverage, which is a real shame. I can vouch from a very personal point of view how caring a nation we really are and this should be highlighted more.
A ‘previous life’
So what’s it like living with a disability? Well this is quite difficult to put into words as it has gotten to the stage where my daily routine is now ‘normal’ 10 years on from the accident. I once heard another wheelchair user talk about his ‘previous life’ – referring to before his accident – and I can very much relate to that. There are so many connections to this ‘previous life’ with relationships, bonds and memories formed over all this time but my life is now lived and structured in a very different way. Routine plays a big role and the things that were so simple to do in this previous life – like getting out of bed, getting dressed, feeding myself or even just meeting friends – are the challenges I face on a daily basis.
I have learned how to plan and manage time meticulously because of this and without this newly-acquired skill my life would be in turmoil. It takes an hour and a half to get up, washed and dressed in the morning with two people helping and about 45 minutes to get to bed. My day is then structured around carers working times giving me windows of opportunities to get things done. It is not something I would choose, or wish on anyone, but like everything in life you just get on with things and learn to adapt.
That is not to say I live an unfulfilled life. On the contrary, I believe I live quite a decent, mostly independent life and do everything I can to maintain this independence which is very important for sanity reasons. In these past 10 years I have completed my leaving Leaving Certificate while in hospital, studied an economics course in UCD, history and psychology in DCU and am about six months short of completing a business degree with the Open University while also having built a house. Keeping my mind busy is a way to alleviate many of the negative thoughts that may creep in from time to time. I have visited places like the UK, US and Portugal (albeit for treatment but very fulfilling nonetheless) and have had a couple of weekends away with some friends so am fairly well travelled. I have also recently embarked on a new business and I’m hoping it can have a huge social impact.
I never thought transport would be such a big issue
Something that became very evident from my travels and living in Ireland was the struggle a wheelchair user goes through to find suitable transport. I remember lying in the hospital going through in my head the problems I would face when returning to the outside world and not for one second did I think transport would be such a big issue.
However, I quickly learned the contrary after being stranded in town on a night out until 6 am because there were no wheelchair taxis available. So, in 2012 I founded Wheelchairtaxi.ie, a social enterprise which brings all forms of wheelchair accessible transport together in one place. The site lists wheelchair taxis, car hire, minibus/coach hire, community transport organisations as well as wheelchair-accessible boats.
While in the US, I had to travel to the hospital every day in the boot of the hotel shuttle bus with my parents holding onto me so I didn’t fall over because we didn’t know where to find suitable transport. This indignity, and knowing I was not the only one going through these problems, also spurred this idea so this is something which I am determined to replicate in as many countries in the developed world as possible.
I am very optimistic about the future with so much ground-breaking research being done on repairing the spinal cord and don’t see this wheelchair as a permanent feature. Human trials on spinal injuries have recently taken place in the US and many more are cropping up each day so the future is very bright. Spinal cord injuries will be curable in my lifetime and each day that goes by is a day closer to this cure. In the meantime, however, living with a disability is something that I have become accustomed to and something which I will have to live with for the immediate future, like it or not.
This article was originally written for the EU INTERREG IVA Citizenship Project’s Community Awareness Programme which is a joint initiative by the Western Health & Social Care Trust and the Health Service Executive West under the Co-operation and Working Together (CAWT) partnership. The aim of the Community Awareness Programme is to raise awareness of disability in the cross border area of the Donegal and Strabane in association with Donegal County Council and Strabane District Council.