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Vulnerable and invisible fight to have voices heard

By Nicola Anderson
Thursday July 08 2010

IN mechanically propelled wheelchairs, with guide dogs or with carers in tow, it was undeniably a struggle -- but they came.

Young children with Down Syndrome, middle-aged adults with intellectual disabilities, parents and family members struggling under the burden of providing 24-hour care, they came -- because they felt they had no choice.

More than 1,000 people from all over the country turned out in protest in Dublin yesterday amid anger, confusion and sorrow at the impact the swingeing axe of healthcare cuts is having on their own lives and the lives of loved ones.

Protests at Leinster House may be nothing new, but the march yesterday was different.

This time it was the turn of the most vulnerable and marginalised people in society, those who are sometimes forgotten, often invisible, who were forced to take to the streets to have their voices heard.

With respite services stopped or cut around the country, families are at "breaking point, afraid they will no longer be able to cope", Inclusion Ireland, the organisers of the march, warned.

As the large gathering left the Garden of Remembrance and marched down O'Connell Street, taxis beeped loudly in solidarity as they passed, with Roberta Connolly, from Dun Laoghaire, up front in her electric wheelchair, leading the protesters into the fray, as the crowd chanted: "When they say cut back, we say fight back."

Banners held aloft read: 'Child Neglect by Proxy'; 'Cruel Coward Cowen'; and 'Give my Brother the Same Rights as Me'.

Bobby Hurley, a widow in her 70s, took the 7.35am train from Limerick with her son John, who has Down Syndrome. John was receiving respite care of three days a month at Bawnmore Centre in Co Limerick for the past 10 years but now the centre has announced that this is all to cease.

The service was a "lifeline" for his mother, who said it meant she was able to go somewhere, see a friend or just have a rest.

"I saved the country millions by looking after my son myself and not putting him into care, and never even received the carer's allowance. Now after all my savings, I'm being left with nothing," said Bobby.

John and Brigitte Butler, from Sutton, Co Dublin, were there with their eight children, including their son Mark (4), who has Down Syndrome.

The family is worried that the cuts may affect the speech therapy service that has produced "amazing" benefits for their son.

"He is now able to 'speech combine' and say things like 'open pop', which means 'open ice-pop'," explained Brigitte, adding that this breakthrough was life-changing for the whole family.

Pat Murphy, from Clonsilla, Co Dublin, was protesting because the respite service for her 15-year-old son Alan is closing at the Daughters of Charity facility on the Navan Road.

"The respite mean a night's sleep and time for the other siblings. It meant a bit of quality time for myself or just to catch up on the housework," she said, adding that Alan needs 24-hour care because he has no sense of danger.

"You have to be one step of him all the time and have the doors and gates locked."

Anne O'Brien, whose daughter Shireen (40) is a resident of St Louise's Centre in Chapelizod, run by the Daughters of Charity, said she was "absolutely furious" at the HSE cuts that resulted in the closure of the daycare facility -- just one month after its official opening.

There are 54 women with intellectual disabilities at the centre, where staffing has been cut by 11pc. Staff are already reporting a regression in a number of the women.

"I'm devastated," Anne said, telling of how the centre had had such a positive effect on her daughter's life. "She was speaking more, she was communicating better and was happier than I've ever seen her."

Eileen O'Donovan, whose daughter Deirdre (46) is profoundly deaf and also a resident at St Louise's, said Deirdre has become increasingly frustrated because her day is no longer structured.

"Now they sit and vegetate in front of the TV," she said. "This country squandered money and now our children are the ones to suffer because of the greed of others."

Mothers Marian Frawley and Sinead Corrigan, from Co Roscommon, said they were worried because the cuts meant that their respective sons, Ben (8) and Ciaran (7), would be sharing a special needs assistant when they started a new school in September, despite having very different needs.

Ben has autism, while Ciaran has severe vision difficulties.

Freda Finlay, chairperson of Inclusion Ireland, called for greater awareness of what is happening to Ireland's most vulnerable citizens.

"It is outrageous that it has come to this," she said. "What have people with disabilities done to be threatened and treated like this?"

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