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Tuesday, December 27, 2016

Minding my disabled daughter: 'I don't want to do this any more'

32-year-old Siobhan Powell can't walk, speak or eat solid food. Her exhausted, frustrated parents want to start a conversation about the lives of carers in Ireland

Alan and Johanna Powell are parents to a disabled child, Siobhan, who is 32. Now in their 60s, the Powells are seeking full-time institutional care for their daughter. Video: Enda O'Dowd

I’m not doing this job by choice,”  Johanne Powell says. “I’m doing this job because I have to do it, because there is no alternative. I don’t want to do it any more. I’m bored. I’m bored out of my tree doing the same thing day in, day out, with no changes. I swear to God I could walk into a supermarket and rob the place blind, because once you have a child in a wheelchair, by definition you’re a good person. It doesn’t matter what you really are.”
Powell is talking about the challenges of caring for her disabled daughter, Siobhan, who is 32. Siobhan is the only child of Johanne and Alan, her husband of 39 years.
“One nurse told me I’d get my reward in heaven. It’s so condescending. What annoys me the most is when people come up to you and say, ‘God only gives these special children to people who can cope with them.’ Well, he can take her back, then.

“Sorry. I’m going to be very straight about it: she’s not special. She’s damaged goods. I wanted the child that I thought I was going to have. The one that was going to have two children by now, and have finished university studies, and be having a life for herself, in a home where I could visit and babysit my grandchildren. I wanted to have that child.”
Johanne and Alan met in 1975, when they were both working on a Norwegian oil tanker. After their marriage they moved to Fethard-on-Sea, in Co Wexford, where Alan’s family has long-standing roots. The intention was that they would both remain working.

Siobhan’s birth, in 1984, changed all their plans. She had the rare genetic condition of ring chromosome 8, and initially she wasn’t expected to survive more than a year. Born with an unusually small head, she has profound mental disabilities. She cannot walk, is nonverbal, does not eat solid food, is doubly incontinent, and has only one kidney, which functions at well below normal levels. “It’s chronic renal failure that we expect will kill her in the end,” Johanne says. Although she is 32 Siobhan wears clothes for an eight-year-old. She has never weighed more than 21kg.
The Powells received the diagnosis of her chromosomal disorder shortly after birth, once tests were complete. “I went to pieces after that,” Johanne says. “I cried for a month. I lost a month of my life. I don’t remember anything about it.

‘I was going to be the perfect mother’ “Before she was born
I had this image in my head that I was going to be the perfect mother. That our baby would be breastfed, and given organic food, and then we’re left with a child who doesn’t want anything to eat.”
Siobhan was tube fed for six months, then began to take liquids. Johanne says that Siobhan has eaten a tiny bit of mashed potato twice in her life; otherwise her diet is entirely liquid.
Alan took nine months off work after the birth, and stayed in Fethard to help out. Then he had to go back to work, which required him to be at sea for months at a time. “It was very hard,” he says. “But someone had to work, to look after the family.”
“I found it so hard and bewildering to have a new baby – and, moreover, to be the mother of a profoundly disabled child,” Johanne says. “I was being told that she was going to be needing physiotherapy, speech therapy, every kind of therapy. All I could think was, I’m her mother; when am I going to have the time to be her mother in the middle of all these therapies she needs?”

‘It can make or break a marriage’
Siobhan's disability is not a result of any genetic abnormalities in her parents: it just happened. They subsequently tried to have other children but were unsuccessful.
As Siobhan got a little older the Powells discussed moving to Norway, where Johanne was born, and where Siobhan would get better public-healthcare support. In the end they didn’t move.
“Alan really didn’t want to go. And everyone here in Fethard knows Siobhan, and she’s part of the village. It would have been better for me if we had gone to Norway but not for anyone else. God, that makes me sound awful saintly.”
Alan continued to work at sea, three months on and three months off. He retired at 55, in 2005, and his presence has made day-to-day life easier for the household, in that Johanne now has constant companionship. “Having a disabled child either makes the marriage very strong or breaks it up. It made ours stronger,” she says.

Now he’s home from sea Alan keeps ducks, geese and hens and maintains two polytunnels that provide many of the vegetables for the house. Most days he’ll take Siobhan out for a drive, and he’s the one who does most of the carrying and lifting of his daughter.

Rosita Boland