Edel Murphy, who has an extremely rare condition and told she wouldn't live past 12, has landed her dream job as ceo of Belfast-based University of Atypical

Edel Murphy has been appointed ceo of Belfast-based University of Atypical, a disabled-led charity that develops and promotes the work of d/Deaf, disabled and neurodiverse artists and enhances access for audiences.

When she was diagnosed at eight-years-old with Multiple Endocrine Neoplasia type 3 (MEN 3), an extremely rare condition affecting around four people in Northern Ireland, doctors told her she would not live beyond the age of 12.

Having had 19 major operations and defied all medical expectations, the 45-year-old, who is originally from Moville, Co Donegal, is looking forward to her new role in her dream job.

She said: “Today is a humbling day for me. I first came into the University of Atypical as a visitor, a fan, a friend, a volunteer and then an employee. I came because I felt I belonged. I saw then how clearly this organisation empowered people to do great things and make this city and our region a better place for people like and unlike me to be.”

Edel said MEN 3 is an endocrine disorder that affects all the glands and hormones.

"It also has an impact on my skeleton (she has severe scoliosis and club foot). It predisposes people to initially a tumour in their thyroid gland, which would be cancerous, that is the first major indicator for a person with the condition, as it was for me. Beyond thyroid cancer, there's a medley of other impacts of the condition. I've had a number of tumours – the other ones were benign. They never know if they're gonna be benign until they take them out and test them, so you go through a rollercoaster of emotions."

MEN 3 is considered very rare, but Edel said there's a possibility of significant under diagnosis in the community.

"I had never met another person with my medical condition until I was 33 years old. He was a young boy of about 10 at the time and physically we looked alike.

“Now I see it (MEN 3) just as one of the unique parts of me, but not the main part of me.”Edel takes up her new role at the University of Atypical on February 1, 2024, after having worked in the organisation as the head of Business Administration for three years.

“I really strongly believe that I do have the ability to be a very good ceo. I'm delighted to be able to do this and I'm never one for turning down an opportunity. Having a medical condition like this, you are told quite often ‘don't push yourself too much..you've gone through a lot’, but I've never been one to sit back because I've always thought that if I don't do it now, maybe I won't be able to do it in the future. I do everything with gusto rather than waiting for another five years to think about it. I think that's probably one of my strengths, that I do have that personal belief.”

The University of Atypical, funded by the Arts Council of Northern Ireland, supports and campaigns for disabled artists through a number of programmes. With its own Atypical Gallery and the Ledger Studio for Performing Arts, the organisation also runs the annual Bounce Arts Festival and many other programmes.

While attending Queen’s University, Edel worked at QFT and then began a career as a drama teacher before going on to work for the Arts Council. She then went to UofA as a project co-ordinator and has paid tribute to former ceos, Damien Coyle and the late Chris Ledger.

“Over the past 30 years many great activists, artists and creators built this organisation. It is an incredible honour for me to find myself now at the helm. Most recently Chris and Damien have taken it to one of the most admired and inspiring organisations in the region, meeting and stretching expectations of d/Deaf, disabled and neurodivergent creatives.”

Edel also paid tribute to a woman who changed her life by helping her learn to speak again after one of her many operations.

“After surgery on my neck when I was eight, I found it very hard to speak so that people could hear me. My mum took me to meet a drama teacher in Derry called Eithne McCloskey. I’d just won a bursary of 50 punts for a drama sketch that I’d written at the Feis in Donegal and I used the money for drama lessons. But it was so much more than that. Over the years, Mrs McCloskey taught me how to speak again in public with confidence. She gave me a sense of myself beyond my physicality. She literally gave me my voice back.”

That remarkable experience with her mentor inspired her to work with other creative people with disabilities to fulfil their potential.

She said: “I want to help change this part of the world for others who are longing to live their dreams while embracing their atypical identity with excitement. It’s already happening, we are doing it today, and together the Atypical team will do it again and again.”

Next year she will marry her long-term partner Claire and believes it is important to live authentically, embracing diversity and being atypical.

She added: “I’m very proud of who I am and intersectionality is an important part of what we do at University of Atypical.”

Sean Fitzsimons, chair of University of Atypical, welcomed Edel to her new position on behalf of the board of trustees.

“Edel brings a wealth of knowledge in respect of the Arts, a talented professional who has honed her craft across these islands and beyond. Alongside this Edel brings formidable business acumen and lived experience of disability.”

Like her predecessors, Chris and Damien, Edel worked for the Arts Council of Northern Ireland, which is the University of Atypical’s primary funder, supporting the organisations many programmes and the annual Bounce Festival which has become one of the primary festivals for d/Deaf, disabled and neurodivergent artists in Europe.

To find out more about the University of Atypical go to universityofatypical.org.