'Parents would come straight from hospital to hand over their babies...'

Irish Examiner

3 days ago

'You would hear stories of parents coming straight from the hospital to hand over their babies.'
Sean Abbott, the outgoing chief executive of Horizons, formerly the Cope Foundation, recalls the early days of his career when parents felt forced to abandon their newborns due to the stigma around disability.
For some of these babies, who spent their whole lives being cared for by his organisation, Horizons staff were the closest thing to a family they ever experienced.
'Nobody would come to visit or be in contact. We looked after them for most of their lives,' he told the Irish Examiner.
'Eventually somebody would find out something about the family and try to make a connection. Sometimes it worked, other times it didn't.
There were some families who didn't want to connect. Myself and other staff got to experience the joy from these people that their families never did.
Mr Abbott, who is retiring after more than four decades, acknowledges the considerable progress Ireland has made over the years in supporting people with disability.
'It's impossible to comprehend the changes that have taken place unless you have worked through it.
I started here in 1980. Back then you would hear stories of parents coming straight from the hospital to hand over their babies.
'Often they came under a lot of pressure from their families who didn't want the shame of having a child with a disability. In those days, the stigma or idea that these children might be a burden was difficult for many families.'
Cope Foundation is now Horizons
Horizons is a not-for-profit voluntary organisation which was founded on May 29, 1957 by former lord mayor of Cork, the late John Bermingham, in response to Cork's then polio epidemic.
John Bermingham with his daughter Joan on his first day as Cork's lord mayor at Cork City Hall in 1968. He had founded the Cope Foundation the previous year. Picture: Irish Examiner Archive
It now cares for some 2,800 people with intellectual disabilities and autism across Cork City and county.
Mr Abbott started with the organisation at the tender age of 19.
'I came here for a summer job. My first job was in one of the buildings in Montenotte. A group of young people, many who had Down syndrome, came running towards me, asking me my name and where I was from.
"From that day I was hooked.
"I stayed on to do the disability nursing training and later became a director of nursing.
Then lord mayor Jim Corr conferred the freedom of the City of Cork on John Bermingham on May 24, 1997, 'in appreciation of his remarkable contribution to the personal growth of persons with mild and profound mental handicaps'. Picture: Irish Examiner Archive
'The prevailing attitude from people at that time was that anyone with disabilities needed to be hidden or locked away.
"People on nights out would ask me if Cope was a frightening place after learning that I worked there. That wasn't my experience. Cope was a place where people were looked after regardless of their disability.
'Before, you wouldn't see these people in places like shopping centres. Now, they are working there.
"They are living their own lives and doing what they want to do. They were restricted for so many years and denied what was possible for them.
'They couldn't have relationships or their own homes. They couldn't have a job. All of these things are possible now for people with disabilities in Ireland.'
The Special Olympics had a huge positive impact on public attitudes, he says:
When the Special Olympics World Games came to Ireland the whole country celebrated and hosted athletes. I think that was the start of real change for people with disabilities.
However, new challenges have emerged for those working in the disability sector — and in particular he cites 'restrictions' which he says are 'horrible'.
'I remember when we could do things for people without even thinking about it.
"When somebody had an emergency at home you were able to put an extra bed in a room and bring someone in for a while till it was figured out.
'Now we have to work within Hiqa and government structures.
'It means that families end up in a crisis situation where people are left in emergency departments.
"They are in acute services even though they are not sick. The reality is they shouldn't be in hospital.
The opening ceremony of the Special Olympics World Games at Croke Park, Dublin, on June 21, 2003. Picture: Dara Mac Donaill
"We had someone recently who was in hospital for 90 days because there was no bed for them.'
And the retiring CEO has a strong message for the Government over the desperate shortage of care places and services.
'They don't have to sit in front of an 87-year-old man with a wife with dementia and a daughter with Down syndrome in her 60s, who is seriously struggling.
'I've had 90-year-old women crying in front of me because they can't access care for their sons or daughters. These are the kind of things that keep me up at night. It's not difficult to see the number of older parents of people with disabilities who need support but nobody realises the impact of not having these services. There is too much of a focus on the process and the system and not on the people.'
He says the compassion shown by his colleagues over the years is unparalleled.
'People here do things you never hear about. They'll make sure that someone is dressed perfectly for their sister's wedding. They'll take time out of their own lives to go to a special life event with them without any pay.
"There was a time when people used to take residents home to stay with them for Christmas.'
Sean Abbott is retiring from his role as CEO of Horizons, formerly the Cope Foundation, which cares for some 2,800 people with intellectual disabilities and autism in Cork. Picture: Jim Coughlan
That doesn't really happen now with the strict safeguarding process. However, people in Horizons have much better lives nowadays so these things are not really needed as much.'
Acknowledging how much time has passed can be bittersweet for Sean.
'I go around visiting people who I have known all their lives. I remember them as children in school and now they are in their 50s. You often reflect on experiences you had with them. It's sometimes sad to see how they have changed over the years. People who were once so involved in the community now need fulltime care. The ageing process in some is often a bit more advanced than would be the norm.
There was one guy who once knew where everybody was going every morning who made sure that everyone got on the right bus. He went from this to being in a wheelchair and needing to be fed.
"That can be difficult but then I think about the kind of life he had and remember how great it was. A lot of people will ask about my wife and children. It's great that they have this ability to connect.'
And what does the future hold for Sean, his wife Eucharia, and sons Jeffrey, Daniel, and Samuel?
'I'm looking forward to spending more time with my family, playing a lot of golf and guitar — but I will be back for visits to Horizons. It has been such a huge part of my life. I don't think I'll ever be able to let it go completely.'