Friday 30 September 2016

Positive power: 'Despite the limitations that using a wheelchair can bring, I still lead a very normal life'

Psychology student Aoife McNicholl works and plays hard. She tells Joy Orpen about some of the difficulties she faces as a wheelchair user. However, she's also hugely upbeat about representing Ireland in her favourite sport

Joy Orpen

Published 25/01/2016 | 02:30

Psychology student Aoife McNicholl. Photo: Gerry Mooney.
Psychology student Aoife McNicholl. Photo: Gerry Mooney.

When adversity comes our way, we can choose to heap blame on others, or we can blame circumstances or bad luck. Or we might decide to make the best of what we've got.

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Someone who absolutely epitomises the spirit of being positive under trying circumstances, is Aoife McNicholl (21) from Portlaoise. She was born with a chronic genetic condition and, as a consequence, is now a wheelchair user; nonetheless, she lives life to the full. During the first year of her life, all seemed perfectly normal. Aoife was meeting her milestones and, like most babies, she brought much happiness to her family. However, when it came time for her to start walking, she was unable to master the skill. Initially, it was thought that she was simply a 'late developer", so physiotherapy was recommended, in the hope that it would get her going. But when neither time nor physical therapy did the trick, Aoife was referred to a neurologist in Our Lady's Children's Hospital, Crumlin. When she was two, she was officially diagnosed with spinal muscular atrophy (SMA). This is a genetic condition that falls under the umbrella of muscular dystrophy (MD). It is characterised by weakness and wasting of the muscles.

"Both parents have to have the defective gene," explains Aoife.

"And when they do, there's a one-in-four chance they will have a child with the condition. Basically it's caused by the interruption of signals coming from my brain to my muscles, and so I have weakness all over my body."

While there is no cure for SMA, Aoife's parents were advised to ensure that Aoife, the elder of their two children, had lots of physiotherapy to strengthen her muscles and to keep her as mobile as possible. In the early years, she could manage to take a few steps, but only with the help of aids.

"When I went to playschool, I realised I couldn't run around or jump like the other children," Aoife says.

"That's my earliest memory of feeling 'different'. And when I was a kid, I went through a phase of feeling frustrated that I couldn't go on a bouncy castle or play GAA with other kids. I'd get upset that I couldn't do what the other children were doing."

At the age of six, Aoife was forced to use a wheelchair on a permanent basis, but that still didn't stop her from enjoying life. Swimming and horse riding became excellent substitutes for running and jumping. But she had to give up riding horses when she was about 12, because she had developed scoliosis (abnormal curvature of the spine) and this resulted in six operations.

Aoife went to mainstream school where she thrived and was always well supported. "My friends would tune in to what I needed," she explains. "They'd always be working out if things were going to be accessible for me. But they also treated me like anyone else. We're still friends and have lots of craic."

She says that going out, for whatever reason, be it work or pleasure, requires a good deal of logistical preparation. "I have to plan well in advance," she says. "It's very difficult to get a wheelchair taxi after eight at night."

Aoife, who is now in her third year studying psychology at Dublin City University (DCU), has 24-hour personal assistant (PA) support while she is at college, and a few hours a day, when she ais t home during the holidays. "It's difficult for me to have lunch in the canteen on my own," she explains, "as I can't open doors and I can't carry the tray. I may not even be able to reach the counter. So having a PA is really great, because it allows me to do whatever I want. Like last night - I went into town to have dinner with friends. My PA got me there and then she left me to be with my pals, and returned later to take me home."

One of the most important aspects of Aoife's life right now is powerchair football. She started playing this sport when she was only nine years old. She now represents not only DCU, but her country as well.

"Our specially adapted wheelchairs have a bar attached to the front and you use this to hit and pass the ball," she explains.

"The chairs have a maximum speed of 10kmh -and that's fast, when you have one travelling straight at you." She says the chairs cost about €3,500, but a new, sophisticated version, costs three times that amount.

"No one in Ireland has one," she says. Currently, Aoife plays for DCU Storm, a four-man team, and is in training for selection for the national squad. They mainly compete in the Association of Irish Powerchair Football (AIPF) league. In 2011, Aoife was a member of the Irish team that played in the World Cup in Paris. In 2014, she captained the Irish team in the European Powerchair Football Association Nations Cup. They achieved a most respectable fourth place, and qualified for the World Cup to be held in 2017. Aoife was also awarded the Most Valuable Player title. "It was such an honour to represent my country and to lead the team," she says.

Aoife's contribution to sport, and her role in uplifting people with disability, has not gone unnoticed at DCU, where she was awarded a scholarship. "I got it in recognition of my achievements with the Irish team," she says, "and because DCU won the AIPF National League. But it's really a combination of sporting and academic achievements. It's fantastic to be recognized for something you love."

Another important aspect of her life is the time she spends at the respite camps organised by Muscular Dystrophy Ireland (MDI). "They have different camps for several age groups," says Aoife. "They provide all the PA support we need. We go to pubs, comedy events, nightclubs and so on, and have a lot of fun."

She says she finds it invaluable to be with people her own age, who have personal experience of living with MD. And, of course, they continue to socialise and exchange notes when they are not at the camps.

A case in point is her romantic relationship with Patrick Flanagan, who also has MD. "I've been with him two years," she says. "He's on the team and he works for MDI." So on the whole, Aoife is living a very rich life.

"Generally, I find most people treat me respectfully; I don't feel I'm treated differently," she says. "Despite the limitations that using a wheelchair can bring, I still lead a very normal life. I get to do the things I want to do, and have fun."

Finally, she says she is fully behind the LoveMDI fundraising campaign on Valentine's Day, when people will be asked to donate €2 by texting LOVEMDI to 50300.

For more information about Muscular Dystrophy Ireland, see mdi.ie

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