Joanne O'Riordan: 'People used to say: she's the one with no arms or legs. They're nicer now'

 

JOANNE O’RIORDAN will appear for the second time on the Late Late Show tonight, which is marking its 50th anniversary on air with a special show.

It’s a tribute to the young woman from Millstreet, Co Cork, that she was deemed to be one of the guests on the show in recent years who has made the most impact on viewers. The first time she appeared, her name was not familiar to the general public. Now it is. O’Riordan, who is 16, was born with Total Amelia syndrome. She has no limbs.

O’Riordan’s response to the syndrome, her Twitter name, and the title of the documentary her brother Steven is making about her, are the same; No Limbs, No Limits. “I was always treated like everyone else growing up. It never really came into my head that I was different,” she says now.

The fact is, O’Riordan is different from most people. To the knowledge of her family, she is one of only seven known people in the world with Total Amelia syndrome. But it’s not solely the syndrome that makes her different. It’s her tenacious and wholly engaging ad-hoc campaigning for disability rights and innovative technological support that has marked her out.

While on the campaign trail prior to the last general election, Enda Kenny called to Millstreet to canvass. “I get random obsessions,” O’Riordan admits cheerfully. “I had one with Enda Kenny.”

The morning Kenny was in her home town, O’Riordan was at Millstreet Community School, doing her Junior school mock exams. Her father Dan Joe contacted his daughter and persuaded the school to allow her to come into town to see Kenny on the campaign trail. O’Riordan, who was then 15, met Kenny. He was filmed on local television promising her that, if elected, there would be no cuts to disability payments. “I thought he was honest. He looked like someone who wasn’t going to tell a lie.”

After Kenny got elected, he sanctioned cuts to youth disability payments. He seems to have forgotten that he had been captured on camera with O’Riordan, assuring her of the exact opposite. When the clip subsequently emerged, O’Riordan wrote an open letter to Kenny expressing her disappointment and anger. “Disabled people have a voice, but are not listened to. You have to shout out louder to make sure you are heard,” she said at the time. As a result, there was a very public retraction of the cuts, and an invitation to appear on the Late Late Show.

“I didn’t think of it as campaigning,” she says now, talking between classes in her transition year at school. “But the best thing about being on television was that before that, I was the person who went to lots of GAA matches and people used to say about me, ‘Oh, she’s the one with no arms or legs’. After I was on the Late Late, people knew what my name was. They knew who I was for a different reason. People are nicer now.”

O’Riordan is chatting from what she laughingly describes as “My car”. Her “car” is a motorised wheelchair, and she detests having to get out of it, as it signifies independence to her.

“When I say I have a car, people think it’s an Audi or something,” she jokes. In fact, some classmates wanted to customised her wheelchair in a technical workshop class. “They wanted to put alloys on the wheels and an exhaust pipe out the back. I was like, no way, you’re not messing with my car. Although actually, I could do with mirrors alright, because I’m not too good at reversing.”

In person, O’Riordan has a large presence. She is focused, articulate, smart, opinionated, naturally funny, with a great turn of phrase, and has a remarkable level of confidence that most 16-year-olds do not possess. “I think I get my confidence from my dad. My dad could talk about anything for hours. See this table? He could talk about that.”

The teenager in her is evident by the colourful concert wristbands stacked on a bar of her wheelchair, most of them for the band members of JLS and One Direction. “I love Harry! Harry is beautiful,” she giggles. “And did you know Justin Bieber has more followers on Twitter than the population of Sweden?”

O’Riordan has been allocated a special-needs assistant, Nicola O’Donoghue. O’Donoghue, who sits in on the interview, makes sure her student is comfortable and is provided with snacks and drinks. “Nicola is my stand-in robot,” she jokes. O’Riordan can get hoarse quite quickly, and needs to sip drinks frequently. She is extremely dexterous with the physical resources she has. “I brush my own teeth, although it’s probably not done the way my dentist would do it.” She depends most on what she can do with her small part of a left arm; this is how she controls her wheelchair, for instance.

O’Riordan is the youngest of six – “Paddy last” – and her siblings and parents encouraged independence when she was still very young. “Those were the days of big PCs. They’d sit me in front of it, and I used a pen in my mouth to stab at the keys. That was when I was five or six. They were playing a game on a PlayStation, and I wanted to play too. They gave me the controls and I figured out how to work it.”

More than anything, technology has helped O’Riordan to claim independence for herself. By second class, she had abandoned the slow practice of writing manually with a pen wedged under her chin: she had moved on to using a laptop, typing swiftly with a pen in her mouth. Her text books are downloaded on to a memory stick, and assignments are saved to the memory stick and then printed out on the nearest classroom printer. “I don’t have a schoolbag. I just have a memory stick.” She got her first phone when she was 10, and now has an iPhone and an iPad. “I can’t live without my phone.”

In April, O’Riordan was invited to speak at the United Nations in New York at the International Telecommunication Union’s conference, called “Girls in Technology”. She told the delegates how she used technology to tweet, use Facebook, send text messages, play computer games and carry out her schoolwork: “Technology has opened up a world of possibilities, through which I have excelled in both my education and social environment around me . . . I’m asking the Girls in Technology who are here today and who are the leading women within their field to start doing what I do, in my life: ‘Think outside the box.’”

She issued a challenge to her audience to “build me a robot . . . This robot would become my 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. 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.

“I want to live an independent life just like you. I don’t want to live in the shadow of others because I want to make my own journey in life and I know if I’m given that chance I can and will succeed. I know that there must be someone out there in the world who can do something like this to make life much easier. It would not just help me, but indeed others who are in similar situations.”

O’Riordan received a standing ovation for her speech, which went around the world via social media. Since then, various organisations and individuals have been in touch about her challenge. They include the Massachusetts Institute of Technology (MIT), which has a world-famous designated robotics lab, and representatives from Apple, which is sending someone to visit her in June to discuss how it can develop software for people who have disabilities.

“I’m just like a normal teenager,” O’Riordan insists. “I get moody. And I don’t think people believe I actually leave my family. I do. If I want to go go-karting in Dublin, I go. If I want to go bowling, I do. I’ve done those things.”

Apart from the robot, what O’Riordan wants is “to jump out of a helicopter. I want to go bungee jumping too, except you have to be a certain height for that. But you could be strapped to someone else jumping out of a helicopter.”

The teenager who successfully challenged the Taoiseach, addressed the United Nations, has attracted the personal interest of MIT and Apple, and longs to jump out of a helicopter is, however, not entirely fearless. “I’m scared of spiders,” she admits.