IT HAPPENED TO ME:Julie Joyce was born without a forearm, and her experience of the health service has been a protracted struggle
I AM classified as a congenital amputee. I was born with no forearm. As a child, I had to travel from Carna in Connemara, Co Galway to the National Rehabilitation hospital in DúLaoghaire twice a year to attend a limb clinic, where I would be measured up for a new limb. At that time, the clinic was run by prosthetic technicians from Queen Mary's Hospital in London.
In my youth I used to wear a silver hook instead of a cosmetic hand. It was a functional limb.
I had a wonderful upbringing. My parents inspired me to be the best I could be, irrespective of my limb loss.
I was quite confident as a child and happy go lucky. I did Irish dancing and attended Scoil Phobail Mhic Dara in Carna, where I was the only amputee.
My confidence waned in my teenage years. With the hook, I had body-image issues and they tied into my sexuality as a teenage girl.
With so much attention paid to the female body and the size zero body, it's hard for a normal teenage girl to come to grips with her body. To have an additional obstacle to overcome makes it much tougher.
While the physical aspects of my needs were met at the hospital, I feel that other aspects were not catered for, such as my emotional needs or, aside from learning how to use a knife and fork, any in-depth occupational therapy. When it comes to amputees, people talk about acquiring, fitting and the funding of prosthetics, but there is little discussion about the issue of body image associated with limb loss. Open discussion of sexuality is still a taboo in Ireland, so sexuality among people with disabilities is never discussed.
I have broached the subject with other members of Amputee Ireland but it is quite a painful subject for people and difficult for them to talk about. I don't think it ever goes away.
In my 20s, I was very angry about being disabled. The anger didn't have anywhere to go. I was never offered counselling for my disability.
With the support of my twin sister, Jackie, and my family I came to accept who I was. Eventually I started to appreciate that I wasn't just a label, an amputee; I was a woman with a disability.In my teens and early 20s I was quite shy around men and shy in my body. It took a while to overcome my sexuality issues and learn to form healthy relationships with men.
Now at the age of 38 I have come to terms with who I am. When I look in the mirror, I am happy with what I see.
When I left school at 18 I started wearing a cosmetic limb up to my elbow. After a year studying business studies in Galway I moved to London. My self-belief and confidence started to grow when I started to work and integrate in wider society.
I moved back to Ireland in 2001 and I now work for the Simon Community on their resettlement project.
I am trying to set up a peer support group facility for amputees in the west of Ireland through Atlantic Prosthetic Orthotic Services in Kilcolgan, Co Galway. The idea is to provide psycho-social and emotional support among amputees. It is important that we have a voice.
Amputees are the invisible disabled. If you were to sit in front of me you would not know that I was disabled.
People often tell me that it is only on the second or third meeting that they realised that I had no left forearm.
I am very open about my disability. People are often curious, they want to know how it happened and how I feel about it. I am happy to discuss it.
A prosthetic limb needs to be changed twice a year. To purchase what I need in Galway from the Atlantic Prosthetic Orthotic Services would cost around €2,000 twice a year. Because I work, I do not qualify for any financial support from the Government and I have to finance it myself. This would be a big financial drain every year.
Because I was born and worked in Britain, I can return to the hospital where I was treated as a child to get my prosthetic twice a year. Irrespective of what you earn, everyone in the UK is entitled to a limb. Whether that is open to me in the long term, I'm not sure.
It seems to me that you have to fight your corner all the time in Ireland to access healthcare. That takes emotion and drains energy.
I am fortunate enough. I just don't have a forearm so I am quite able-bodied and fully functioning. Compare me to someone who is 60 years old and has been forced into voluntary retirement because of the loss of a leg. They are starting right from the beginning, trying to advocate for themselves and get what they are entitled to.
It is ridiculous that living in 2008 in what appear to be a wealthy country, people still have to fight to get a limb.
In conversation with Fiona Tyrrell
Readers are invited to write in about their own experiences of the health service, good or bad. Responses should be sent to healthsupplement@irish-times.ie