'Things have changed for the better' for people in Ireland living with Down Syndrome
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The sister of a man who was one of the oldest people in Ireland living with Down Syndrome has said she was delighted for James Martin’s recent Oscar win, because it shows things are finally changing.
James Daly from Sean McDermott St, north inner-city Dublin, died on Christmas Day 2021 aged 65. He was institutionalised for the last 40 years of his life after his dying mother Hannah insisted he go into State care rather than be a burden her other children with his round-the-clock care needs.
Sadly, the family later learned that, during those early years in institutions, James was “found tied up, face down and heavily sedated”.
His sister Anne Smyth told the that the world’s perspective for people living with Down Syndrome is now “a million miles from my brother’s time on this earth”.
She said: “I watched the actor James Martin from Belfast picking up his Oscar for and everyone singing happy birthday to him, and I was thinking of our James, of course I was.
“He was the first person with Down Syndrome to win an Oscar and it really is a million miles from my brother’s life.
“I was very emotional seeing it. Things have changed for the better, I really am delighted for James Martin.
“My brother couldn’t really talk, and he had many other intellectual problems as well as living with Down Syndrome, but it just shows that the world has changed so much, and James did not have early interventions to help him achieve his full potential”.
Down Syndrome affects approximately 1 in every 500 births here in Ireland. It is estimated that there are about 7,000 people in Ireland living with Down Syndrome.
It is a condition in which a person has an extra chromosome, and they determine how a baby’s body forms and functions during a pregnancy and after birth.
At the time of his birth in 1956, doctors told Hannah Daly they could have James "put away" for her.
But she refused, telling doctors that God had given her “a beautiful gift” and she was going to take care of him.
James grew up in the inner-city flats with his family until he was in his 20s.
His father died young and, when Hannah fell ill, she insisted he be placed in an institution prior to her death because she didn’t believe it was her children’s responsibility to care for their brother.
Anne said: “That is something I regret, but you could not take my mother on. She had put James into State care long before she died because she believed he would be safe in there and that we shouldn’t have the responsibility.
“We visited him every weekend. We never missed a birthday or Christmas, and we had him for summer holidays. All of us took him home every weekend between us and he was, and still is, very much part of our lives. But is accepted today that the majority of these institutions back then were horrible places.”
The family later learned that James had been abused by other patients and that he had been hit in one eye causing him to lose his vision.
On one visit to the centre, his family found him tied up face down and heavily sedated “for his own good”.
He had been in the Grangegorman psychiatric unit, Peamount Sanatorium, and Our Lady of Good Counsel in Ballyboden.
Anne said: "The cruelty of those places back then and you were so helpless. You really have to trust an institution and I think lots of people who work there are good at their job, but there are others doing it for the wrong reasons.
“James was heavily sedated, tied up and left face down and naked in a bed, he was also stabbed in the leg and lost his vision in one eye. Another patient had hit him in the eye with a knife and the eye was left untreated and then he went blind. This was a long time ago, but things like this shouldn’t have happened.
“I am just glad that the place he was in in Tallaght was lovely in the end and his last few years were all good. He died in hospital, and we were all there".
Anne has also hit out at this month's Health Information and Quality Authority report into the Liffey 4 centre in Dublin 24 which revealed a litany of failures for vulnerable patients in the centre operated by St John of God Community Services.
The report found residents at the centre did not feel safe due to incidents which included physical assaults such as being punched, kicked, hit and their hair being pulled.
“That just made me so angry," she said. "Things have changed so much but on the other hand things are still going on among vulnerable patients and the safeguards are just not in place".
While Anne accepts her mother didn't want to burden her children with James, she still didn't want him anywhere other than his home.
She said: "It will always upset me. James went to a lovely place in Tallaght for the last few years before he died but he had a miserable life after my mother died.
“We challenged the management of the places James was in and they made life hard for us. I know we had no chance of getting him out of there, but we always took them on and complained about his care.
“My mother probably overdid it with James, wrapping him in cotton wool and never letting anyone near him, but really, he should have been mixing with kids outside getting a few falls and things. But my mother had no one to learn from there was no information back then.”
In a statement, the HSE said it cannot comment on individual cases.
"The HSE adult safeguarding policy, Safeguarding Vulnerable Persons at Risk of Abuse - Policy and Procedures (2014), and the operational work of the Safeguarding Teams within Community Operations are part of a wide range of measures to promote and protect the welfare and safety of adults who may be vulnerable and at risk of abuse.
"These measures also include the confidential recipient, complaints process, protected disclosure, incident management framework, and integrated risk management policy".