Health

Tuesday 2 September 2014

No limbs, No limits

As her time as Young Person of the Year draws to an end, Joanne O'Riordan reflects on a rollercoaster 12 months that included addressing the UN, receiving messages from One Direction and starting work on her very own robot. By Nathalie Marquez Courtney

Joanne O'Riordan isn't like other teenagers. She's as bubbly and chatty as any 17 year old, but possesses a poise and charm beyond her years.

Confident, smart and incredibly driven, she talks authoritatively and passionately – although bring up One Direction and the teen in her quickly emerges.

"I think Harry is my favourite, but it's hard to pick," she muses, adding that posters of the teen idols are plastered all over her bedroom door. "It's a little like a shrine!"

Talking to her, you would never guess that she was born with a condition so rare that only six other people in the world have it. Joanne has Total Amelia Syndrome, which means she was born with no arms or legs. Joanne first shot to fame back in 2011, when she confronted Enda Kenny on proposed budget cuts to youth disability payments, forcing the Government into a U-turn. She has appeared on the 'Late Late Show' twice, shared a stage with pop stars, received messages of support from One Direction's Niall Horan, addressed the UN and, last September, was named Young Person of the Year at the People of the Year Awards.

The awards invite members of the public to nominate "everyday heroes and heroines" living within local communities. During the black-tie event, Joanne shared a stage with 'The Voice of Ireland' judge and heartthrob Niall "Bressie" Breslin and was honoured for "her determination in highlighting the challenges faced by people with disabilities in Ireland".

"It's crazy looking back on the past year," she says. One of the highlights was travelling to New York to deliver the keynote address to 200 global leaders at Girls in Technology, the United Nations International Telecommunication Union's conference.

"We got to stay for a week, and it coincided with my 16th birthday," she remembers. "The UN helped me celebrate it! We had planned to go to the Hard Rock Cafe, and the UN sent a cake and told them to make a big deal out of it."

During her Girls in Technology address, Joanne spoke to female world leaders about the positive impact technology has had on her life, calling technology "the limb I never had".

From a young age, Joanne was given pencils and crayons and taught herself how to write. But she had soon progressed on to the family computer and figured out how to use the keyboard by manoeuvring her lip, chin and nose. She even learned how to use PlayStation controls when she saw her siblings playing and decided to join in.

Over the years, technology has helped Joanne become more and more independent.

She can type 36 words a minute on her laptop, using a pen wedged under her chin to hit the keys. Her schoolbooks are stored as PDFs on a memory stick and, like so many teens, she's rarely without her phone or iPad. She shops online, downloads her favourite music and chats to family and friends. Her favourite apps are Facebook and Twitter, and she also loves mobile gaming. "My brother and I are are obsessed with Temple Run," she confides. There are videos of Joanne on YouTube taking part in Nintendo DS challenges in packed lecture halls – and winning.

But she wants technology to go a step further. Speaking to UN delegates, she challenged them to build her a robot that would act as her hands and legs. "Call it crazy, call it insane, call it what you like – but the challenges I face every day get bigger and far greater to overcome," she told them.

"I know I can overcome these challenges, but I need your help. I can't rely on my parents, my brothers, sister and others all my life, can I? Certainly not, and I don't want to."

Joanne's motto has always been "No limbs, no limits" and it's now the title of of a documentary that her brother Steven is directing. "I have always had great admiration for Joanne," he says. "She makes me realise that if I set my mind to doing something I can and will get there – she's a trier!"

Steven says that the documentary is "very much observational" and will look at the everyday aspects of Joanne's life. It is being partly funded through a €25,000 grant from Rehab, and has also received support from Vodafone, the BBC and through donations online at www.nolimbsnolimits.net.

"The general public have been amazing and without the support of these people we would not be in a position we are in," says Steven. "I just hope I can do justice to a great story and even more so to my family. It's a big task but I feel that there's a lovely story in there of triumph over adversity. I think we need a story like this to uplift us."

The documentary features early home videos, which show Joanne as a laughing, happy baby, playfully being tossed around by her brother, or determinedly trying to feed herself.

"I hope that by looking at Joanne and observing how she lives her life it will allow us to see the endless possibilities of what any one person can achieve."

Joanne says "I always wanted to move to bigger cities. Myself and my friend Aisling really want to go travelling. We'd love to go to Cuba, New York, LA, Australia . . ." she trails off, laughing.

The key to helping Joanne live an independent life lies in technology, and the documentary will explore Joanne's attempts to get a robot built. The family have been in talks with Irish tech companies and it was even reported that organisations like Apple and the Massachusetts Institute of Technology (MIT) were also in touch.

"It's very difficult because there isn't a lot of money to invest in this kind of technology, but it is my hope that someone out there would see the merit in funding a project that will allow Joanne, and hopefully others, to live more independently," he says,

"I'd love for it to do girly things like do my make-up – if I had a robot that was really good at hair and make-up I'd be sorted for life!" Joanne jokes. "But seriously, I'm hoping it would be able to pick up things I drop."

For now, Joanne is focusing on her studies and enjoying the buzz that being Young Person of the Year has brought. "I liked the way people recognise you," she says. "It's a really nice feeling. People come up to me all the time and talk to me. Because I'm out there now, people want me to go to their schools or communities and give speeches.

'My friends think it's hilarious," she continues, "but it's great when younger people come up to you and say that you're their role model." She has never shied away from the attention. "People are always staring; but I know they don't mean to be rude, they're just curious.

"People always focus on the negatives, but there are lots of perks," she explains.

"At home, you can always get out of doing the washing up, and you can always milk it – me and my friends have used it as a way to get into meet and greets. At the One Direction signing we were at the back. The guard felt sorry for me though, and brought me up to the very front!"

Joanne hopes to study journalism once she finishes school – "there's a course in DCU, but I want to keep my options open" – and wants to become a writer or TV presenter with her own show.

Rehab is now seeking nominations for the 2013 People of the Year awards and Joanne hopes that her successor has as a good a year as she's had.

"My advice to the winner would be to enjoy it, and don't be nervous," she says. "Keep yourself out there and highlight the issues that are important to you. Oh and get pictures with the celebrities too!"

Nominations for the People of the Year Awards 2013 are now open and you can submit your nominee at www.peopleoftheyear.com. The closing date is Monday, June 14.

Irish Independent

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