Eugene Callan: Pioneer in independent living movement

Born: October 18th, 1964. Died: September 27th, 2017

Eugene Callan and President Mary McAleese at a conference in Dublin in 2007 on independent living for people with disabilities. Photograph: Cyril Byrne

Eugene Callan and President Mary McAleese at a conference in Dublin in 2007 on independent living for people with disabilities. Photograph: Cyril Byrne

 

Eugene Callan, who died in September, was a pioneer in the independent living movement. He was a member of the establishment group for the Council for the Status of People with Disabilities and a trustee of Cheshire Ireland for 12 years. A former chairperson of the Centre for Independent Living (CIL) for almost a decade, Callan campaigned for the development and expansion of self-directed personal assistance services for people with disabilities and became an advocate of best practice around independent living.

When there was an announcement in 2012 from the Department of Health regarding a €10 million budget cut to personal assistance services, Callan was a driving force behind the campaign to seek a reversal of this decision. The protest led to cuts being reversed and to the ring-fencing of budgets for personal assistance services.

Callan’s capacity for strategic thinking and his vision for independent living where people with disabilities are empowered to live the life they choose was recognised by his peers in the disability movement in Ireland and Europe. He also had a small consultancy role in Damien O’Donnell’s acclaimed film Inside I’m Dancing (2004).

Spinal injury

From a farming background in Carrickmacross, Co Monaghan, Callan incurred a high-level spinal injury in 1982 at the age of 18, when a car accident left him paralysed from the neck down. Following rehabilitation at the National Rehabilitation Hospital in Dún Laoghaire, he studied accounting at Rehab in Sandymount. He realised that computers and IT were the way forward, as aids both to work and to independent living. He set about gaining as much knowledge as possible and obtained a degree in IT from DCU.

When he moved to the Cara Cheshire House in the Phoenix Park in 1985, where he lived for 12 years, he volunteered to computerise the accounting system. He earned much respect and trust, which led him to being offered a full-time position as office manager. He then transferred to Cheshire Ireland’s central office, where he was payroll and pensions administrator. In the words of a colleague, he was “a genius at Excel”.

Callan recounted being offered a job at the US embassy by the then ambassador to Ireland, Jean Kennedy Smith who was a regular visitor to the Cara Cheshire House, which is located near the ambassador’s residence, but in his usual altruistic way he replied: “Thanks, I have a job, but my friend over there needs one.”

Quiet acceptance

Though paralysed from the neck down and physically dependent on others in every way, Callan had a quiet acceptance of his disability and never allowed it to define him. He moved about freely in his chin-controlled wheelchair, often popping into town on the Luas, wandering around St Stephen’s Green or meeting friends for coffee on Grafton Street. He used a mouth stick to operate the computer, moving on to voice activated software as it was developed.

He frequently wrote letters to The Irish Times on a range of issues including politics, economics and social affairs. His innate curiosity and appetite to learn led him to embrace technology, current affairs, philosophy, science, theatre, cinema and music. He enjoyed travel and revelled in different cultures and new experiences, his ventures taking him to South Africa, to the hills of northern Thailand, to the US and, frequently, to other parts of Europe.

Until the 1990s the only option for most people with significant disabilities was to live in a residential care setting. A campaign by CIL to bring about a social model of service delivery, and for a State-funded personal assistance service, came to fruition in the mid-1990s. In 1996 Callan embraced the opportunity which independent living offered and moved into his own home with the help of personal assistants and the back-up of Niamh Gaffney, a nurse whom he went on to marry.

At a celebration of Callan’s life in the Victorian chapel in Mount Jerome Cemetery on October 1st, his good friend David Egan said: “Eugene’s quiet intelligence, his ability to see the big picture, his lived experience and his intellectualisation of his own disability made him a perfect role model for a life well lived.”

He is survived by his wife, Niamh; his mother, Kathleen; and his sister Margaret and brothers Patrick, Thomas and Michael.