The view from a wheelchair

A new book shows how life has changed dramatically for wheelchair users in the past 50 years, writes SYLVIA THOMPSON

DID YOU ever wonder what life as a wheelchair user is like? Or, indeed, how different it is now to 50 years ago?

Extraordinary Lives, a new book written by Joanna Marsden for the Irish Wheelchair Association (IWA) chronicling the lives of wheelchair users from the 1960s to the present day, offers a huge insight into the changes in the personal and public lives of those with a physical disability in the past 50 years.

The book begins with stories of founder members of the IWA such as Fr Leo Close – the first wheelchair user in the world to be ordained as a Catholic priest – and Jack Kerrigan. Their personal experiences show how significant advances in rehabilitation in the 1960s allowed people to think more positively about living with a disability.

“Either I am content to be the family invalid . . . or I take responsibility for myself and lead a normal life within the confines of a wheelchair,” Kerrigan said after the diving accident which fractured his spinal vertebrae at the age of 21.

The treatment available to people such as Kerrigan and others at the Stoke Mandeville hospital in England and their participation in the first Paralympic Games in Rome in 1960 prompted both the founding of the IWA and the subsequent development of the National Rehabilitation Hospital in Dún Laoghaire, Co Dublin.

Oliver Murphy is the only surviving founding member of the IWA. “The IWA opened up a whole new world, getting people out for socials every week and bringing them on holidays. Until then, you didn’t really see people in wheelchairs,” he explains.

Home-made access solutions in members’ homes went on to influence the adaptations for wheelchairs that many of us now take for granted.

While many members of the IWA acquired their disability (one member described it like a bomb being thrown into the middle of a family), others were born with physical disabilities. Many of these people grew up in places such as St Mary’s Hospital in Baldoyle, Co Dublin, moving as young adults to the Cara Cheshire Home in Phoenix Park.

Kathleen Reynolds is one individual who, after spending her childhood in residential centres, married, moved to a flat and reared three children.

“When I left the Cheshire Home, I knew how to boil a kettle – that was it. I had no life skills. I didn’t even know how to start a fire,” she explains.

Marsden writes about how in the days before public transport accessibility, Reynolds would often be seen crawling on to Dublin buses with two of her boys walking beside her and another strapped to her chest.

“I didn’t panic. By the time he was five or six, my eldest lad would fold my chair for me and the other lad would put his hands up so that someone could lift him on,” she recalls in the book.

The recently deceased Lord Dunraven from Adare Manor in Co Limerick became an active member of the IWA in the 1970s. He spoke passionately about how important social activities were and how the increasing number of accessible venues – including Croke Park, Lansdowne Road and race meetings – made such a difference to people’s lives.

He cited the International Year of Disabled People in 1981 as the turning point in raising awareness of disability.

Martin Naughton is best known as a pioneer of the independent living movement. Having grown up in St Mary’s Hospital, his personal experiences of disability motivated him to set up integrated sports clubs for people with and without disabilities.

“There began to be young people in the community who were authorities on disability and who had best friends with disabilities,” he explains of his involvement with the girl guide and scout groups and football clubs in north County Dublin.

Naughton’s first hand experience of the Boston Center for Independent Living (CIL) prompted him to set up a similar centre in Ireland. Funds were raised, accommodation was found and personal assistants were recruited.

“Our big thing was that we wanted people with disabilities to ask themselves: is this accommodation right for you? Are you in charge of your own life? Are you doing what you want to do? That was the ethos of the Centre for Independent Living,” he explains.

The CIL also set up a programme called “Operation Get Out”, which was aimed at people living in Cheshire Homes all their lives.

While the concept of personal assistants for people with disabilities is now well established, Naughton cautions, “One thing we have to be careful of now is that we don’t institutionalise people’s own homes by over-regulating the way personal assistant services are delivered.”

The prospect of Government cuts is one of Yvonne Fahy’s biggest concerns. “Many people with disabilities live in fear of cutbacks in services and social welfare. Many of us don’t have the opportunity to work. My biggest worry is if they cut my personal assistant hours . . .

“The way I see it is that I’m saving the Government a fortune by living independently. If I didn’t have this support, I couldn’t bear the thought of what would happen. It’s so important to have your own home.”

Actor, journalist and disability campaigner Donal Toolin also adds a word of caution.

“I do think our culture is changing. Although even in the relatively secular era that we’re in, we still have the hangover of the old way of thinking, the ‘God love them’ attitude towards people with disabilities. Interestingly, a lot of the old religiousness did contain a level of empathy, which I think we will also see diminishing.

“I think we are going to see a new reality for disabled people. You could call it a backlash, but I think what we will see is a competition for empathy amongst many different groups, especially in this economic environment . . . Disabled people are going to have to be more assertive in the years ahead.”

Extraordinary Lives – Celebrating 50 years of the Irish Wheelchair Association by Joanna Marsden with contemporary photographs by Paul Sherwood (Dyflin Publications, €24.99), is available from Easons and Irish Wheelchair Association offices, tel: 01-8186400, iwa.ie

TIMELINE: KEY CHANGES FOR PEOPLE WITH DISABILITIES

September 1960: The first Paralympic Games were held in Rome, with wheelchair users from 23 countries – including Ireland – participating.

June 1968: Introduction of tax relief for drivers with disabilities followed by relief schemes, fuel rebates and grants. The IWA driving school was set up in February 1970.

June 1971: An Foras Forbartha (the National Institute for Physical Planning and Construction Research) agreed that future buildings would be designed so that wheelchair users could make full use of all facilities. However, it wasn’t until the Building Control Act in 1990 (enforced in 1992) that significant progress was made.

December 1975: UN Declaration on the Rights of Disabled People stipulated that disabled persons are entitled to have their special needs taken into consideration at all stages of economic and social planning. The IWA 1977 survey of people’s needs in terms of education, housing, training, employment and residential care revealed low levels of education, employment and social contact for those with mobility problems.

1981: International Year of Disabled People. Dublin City Marathon became one of the first in Europe to introduce a wheelchair category.

January 1983: The Home Care Attendant scheme begins. This was the first effort to provide support in people’s homes so that they could live as independently as possible in their communities. The personal assistants programme promoted by the Centre for Independent Living placed the management of the personal assistant into the hands of the person with the disability.

February 1993: Brian Crowley became the first wheelchair user in the Seanad.

November 1993: The Commission on the Status of People with Disabilities was established .

2000: The Equal Status Act outlawed discrimination in the provision of goods and services, following on from the Employment Equality Act in 1998, which outlawed discrimination in employment.

September 2004: Publication of the Disability Bill followed by the Disability Act in July 2005 which supports the provision of disability-specific services and improves access to mainstream public services.