JUST back in her office, Edel Murphy apologises as she flings off a pair of shoes she doesn’t normally wear – “they’re killing me” – before sitting down to chat about her new role as CEO of the University of Atypical in Belfast.
It is a minor throwaway comment - and one many women will relate to - but for the new head of Northern Ireland’s leading disability arts organisation, pushing through the pain barrier and keeping going has been a lifelong mindset derived from a marathon walk in the ‘wrong’ shoes.
Diagnosed as a young child with the incurable genetic disorder, Multiple Endocrine Neoplasia type 3 (MEN 3) – a rare condition affecting the endocrine glands – doctors at first believed she would not live beyond the age of 12.
She has undergone 19 operations to date – internally on different parts of her digestive system and also on her foot, face and neck, the latter resulting from tumours linked to her condition.
On top of the physical trauma, the 45-year-old has also come through the other end of poor mental health, learning to accept her physical differences and choosing “not to see them as a negative thing any more”.
An unyielding ‘can do’ attitude that surfaced in early childhood is still her mantra today and she is thrilled to be in her “dream job” at the helm of an organisation she first encountered as a “fan, friend and volunteer” before joining the payroll as a project co-ordinator.
“I saw clearly how this organisation empowers people to do great things,” she says of the disabled-led charity that develops and promotes the work of deaf, disabled and neurodiverse artists.
“I saw it from the inside out. I now want to use my own personal experiences to help hundreds of great artists fulfil their potential.”
Back in school at Thornhill College in Derry – just across the border from where she lived with her supportive parents and siblings in Moville, Co Donegal – she remembers “always arguing with the teachers that I could do something when they thought I couldn’t” and demanding to be treated like everyone else.
“Today, thankfully, there is more of a ‘can do’ attitude in schools - looking at what barriers can be removed to make sure everyone can take part,” she says. “And at the University of Atypical (formerly the Arts and Disability Forum), that is also the way we operate, using the social model of disability, whether that is bringing in sign language support for deaf people or audio description for those who are blind. It means all sorts of support – even tiny things – and, really, just asking the question, ‘What can I do so that you can fully take part?’”
One of the first challenges of the job will be to secure funding for around 400 direct members who sign up for the various activities and around 600 artists supported annually through employment, grants and training.
“I hope to bring in a lot more focus on the artists themselves and profile artists on a national and possibly international basis,” says Edel who, as well as being busy with her new role, describes herself as a “full-time girlfriend” (she is planning to wed her Dublin-based partner, Claire, next year) and “full-time daughter” (helping her mother who has Alzheimer’s disease).
“We do need to seek additional funding to support any developments – so that is the first point I have to address as CEO. Where do we get the funding to make real all of the ambition and all of the ideas that are here?” she says.
“Because we work in the disability sector as well as the arts sector, we have a crossover into different government departments. The Department for Communities has helped us a lot in terms of sign language support and we’re looking forward to the new government making sign language an official language in Northern Ireland, in keeping with other parts of the UK and the Republic of Ireland.”
With a background in teaching (English and drama), working with the homeless (the Simon Community) and as a former employee of the Arts Council NI, the English and psychology graduate (Queen’s University) brings a varied skill-set to the post.
“To be honest, working with the Simon Community was a real learning curve for me,” she says. “I really saw what some people went through.
“I lived quite an isolated existence in Co Donegal and because I had been so sick, I wouldn’t have had even the same social life as an ordinary teenager there, so my eyes were opened to a lot of things when I came to Belfast. Belfast was my time of really learning and becoming part of things.”
Notwithstanding her many hospitalisations, she left behind a happy, sheltered childhood in Moville to move to Belfast to attend university, but one of her early visits was for a drama workshop at the Lyric Theatre.
“I was selected to be part of that as a young woman of 21 and I performed on the Lyric stage which was something I had always wanted to do, ever since my cousin and I came up on the bus from Donegal when I was about 15 to watch Oliver Twist,” she recalls. “I used to write poetry and drama sketches and was very much helped by drama.
“After surgery on my neck when I was eight, I found it very hard to speak, so my mum took me to meet Derry drama teacher, Eithne McCloskey. I had just won a bursary of 50 punts for a drama sketch I had written and I used the money for drama lessons. I got so much more out of it, though – basically, Mrs McCloskey gave me a sense of myself beyond my physicality. She literally gave me my voice back.”
She later signed up for the AMEND (Association for Multiple Endocrine Neoplasia Disorders) charity, sitting on its board of management and giving talks and supporting others with a similar condition to her own.
“At first, I was actually really afraid of meeting other people like me,” she says with candour. “I honestly didn’t know what I would think.
“In the end, when I met others with the same physical characteristics and idiosyncrasies, I thought they were beautiful. I thought, ‘Wow, what a beautiful person; what a lovely person’.
“And from that experience, I came away thinking, ‘That’s what some people are thinking about me’. I felt bad that I had given myself a hard time because if I was criticising myself, I was criticising them too. It was great because I could just love my body and love what I look like, and just celebrate difference in everybody – myself included.”
