Joanne O’Riordan

 

 

joanneThere is an awe-inspiring young woman I’d like you to meet. Before I introduce her, I have a little exercise for you first. I’d like you to cast your mind back to when you were sixteen. Remember how it felt. Exciting, perhaps. Overwhelming, too. Lonely, for many. One thing I think we all felt as teenagers was that we were somehow different, that the world could not possibly begin to understand the unique constellation that was us. We may even have written terrible poetry to that effect. To find what fit you pushed limits: you tried on new emotions for size, tested your family to their limits, and probably broke a limb or two, just to find out what your body could – and could not – do. You felt different, yet so desperately wanted to feel the same. And those terrible, terrible clothes? You’re forgiven. At sixteen, you most likely wanted to look like everyone else, too.

Today you realise that whatever made you different as a teenager was to be your greatest asset. Geek then? Technology titan now….plus a thousand other examples. If I were to write a letter to my teenage self, it might read: ‘Dear Norah. Try not to worry. You are exactly who you are supposed to be.’ Had my teenage self read it, I doubt she would have been convinced! Because it has taken me, and everyone I know, decades to appreciate that being unique is the most powerful, precious gift we possess.

Meet Joanne O’Riordan. At eighteen, she is no different from any other teenager. She loves One Direction, is a passionate football supporter and a self-confessed iPhone addict. She has dyed red hair and, when we meet, is preparing to sit her Leaving Certificate. Joanne is smart, funny and ambitious. Like any teenager, she gets angry sometimes … and no more so than when someone won’t allow her to speak. She’s very good, incidentally, when it comes to speaking. Joanne O’Riordan is a typical teenager in every sense, but two. In 2012, aged sixteen, she delivered a stunning keynote speech to the United Nations. And in 1996, by virtue of her birth, she entered a very tiny group of individuals diagnosed with Total Amelia Syndrome.

‘Total Amelia syndrome means that you were born without your limbs,’ she explains. ‘And there’s no real explanation as to why that happened. There are only six other people in the world like me, so that’s what makes us pretty unique.’

I’m talking to Joanne on the eve of the release of a documentary entitled No Limbs, No Limits. Created by her big brother, Steven, it chronicles her life to date and includes home footage of Joanne’s tireless attempts to beat the odds. It shows how each day has for her been an uphill struggle, how incremental improvements in quality of life have demanded a preternatural strength of will. ‘I’m unique,’ she says. ‘But I am not different. I have overcome many barriers and obstacles that may be inconceivable to any able-bodied person. It never matters how long it takes to get there. All that ever matters is that I try, and try again…’

Joanne grew up in a modest house in County Cork with parents, Ann and Dan Joe, three brothers and one sister. Early years, as recounted in her brilliant TED Talk, featured various contraptions, each designed to improve her mobility. One, a ‘flowerpot-type thing’ worked: it allowed Joanne sit into it and ‘bop around a bit, explore my environment…look at something other than the ceiling’. Next was a ‘little jacket’ with fake limbs attached. This was less successful. ‘My brother said it made me look like a plastic doll. My family, like me, preferred me as I was – natural.’ Following that, a micro-electric hand was created, but proved too heavy for the little girl to bear. Meanwhile, Joanne’s parents had decided to encourage her to walk. Their daughter smiles at their optimism even now, vaguely remembering hours spent rolling off the dining-room table as part of the family effort to prove every medical professional wrong.

‘There were many times I fell off the table and cried,’ she says. ‘But eventually I, like so many others, took my first step. This was a step into the realisation that my life would no longer be on the floor, or in a pot, restricted.’

Restrictions lifted, Joanne really got moving. Aiding this was her ‘car’, a motorised wheelchair allowing her move in any direction she pleased, and at speed (she likes speed). It was in this car, in February 2011, that she squared up to a politician named Enda Kenny, who was then on the hustings trail in her hometown of Millstreet, Co. Cork. There he made her a promise: should his national leadership campaign prove successful, she could be assured that government disability allowances would not be cut.

Enda won. Joanne was delighted, describing him to schoolfriends as a ‘legend’. She and her family knew that daily life with government allowances was challenging enough, making reduced assistance an unthinkable prospect. And so a 2012 Budget announcement came as a crushing blow: disability allowances were, after all, to be reduced. Enda had reneged on his promise. As for Joanne? She was angry.

Using her chin to type, she wrote the nation’s leader a letter. ‘The next time,’ it read, ‘do not tell people like me something that you are not going to do.’ She upbraided him – articulately – in the press, speaking of how disabled people have a voice, yet are not listened to: ‘You have to shout out louder to make sure you are heard.’ Her shouts were heard. The Taoiseach reversed his decision and Joanne found herself an unintentional hero. News headlines carried her name. National awards followed. Invitations to address the world came next.

‘I never thought it would become this big, entire situation,’ she tells me. ‘When he came to Millstreet, I was just having a general conversation with him.’ His retraction has, she says, regained her respect. ‘I still like Enda Kenny, even if people find that hard to believe. I met him at the People of the Year Awards in 2012. He told me that he had done his research and found out that we share the same birthday…but I already knew that!’

I ask a simple question: how is life today? ‘I have always wanted to be independent,’ she responds. ‘As a teenager now I want to feel like I’m taking on the world, and I can win, and all that jazz…I try to do everything by myself.’ Joanne is very funny, upbeat company, but I wonder if she has always been such a positive person. Growing up, was she conscious of her differences? ‘No, not really,’ she says, ‘I grew up in an area where everyone knew me from birth. I was lucky in that no one ever picked out the differences, but if you’d go outside of Millstreet, you’d have the odd one or two toddlers saying, ‘look at her, she has no hands and legs’. But that doesn’t bother me, because they’re just inquisitive. I know, if I was in their situation, I would probably be the exact same.’

We talk on, and to appreciate her personality, you need to eavesdrop…

 

How do you deal with it, Joanne, when children make comments about you on the street?

Well, their mother usually takes them away before anything more is said! It’s fairly awkward that way…but if they do hang around, I would sometimes talk away to them. They’re kids at the end of the day. They don’t have any malice in what they’re saying.

 

I’ve spoken to your mum, Ann, before and I know how much your family believes in you. You grew up believing you could be anything you ever wanted to be in the world. So what did you want to be?

I wanted to be a Pokémon trainer, or a fireman. I thought I could do anything! Now, I’m hoping to become a sports journalist, covering GAA or Spanish soccer. The big aim is to have my own TV show, so hopefully that will happen soon.

 

Are you mad about sports?

Ya – it’s a slight obsession! Since I was about three years old my father said I had an obsession with sweaty men!

 

You’re a very lovable young woman, but if Ann were here would she talk about the rebellious side of the teenager?!

Ann would tell you about the hormonal teenager who’s having mental breakdowns every hour of the day…no, I’m joking! I suppose I’m a regular teenager. I have good days and down days and whatever. I was reading this thing about ‘what tree you are’ the other day. It told me I’m a nutwood – that I have a really bad temper and that I’m egotistical maniac and always have been…it described me pretty well, I’m not gonna lie!

 

You might be a regular teenager, but you’re no ordinary young woman. You were invited to the UN to speak before the International Telecommunication Union. How did the invite come about?

It came about after one of my appearances on The Late Late Show. An Irishman named Paul Conneally – who is based in Geneva – was organising a conference for girls in technology … he saw my interview and saw how obsessed with technology I was, and how much it made an impact on my life. I often say that technology is one of my limbs. So I went over, did my speech, and it all happened on the week of my sixteenth birthday, which was pretty cool.

 

Where you nervous?

No, not really. They’re just regular people, only in fancy suits!

 

You used the occasion to challenge the tech community to produce a robot for you, to assist you in daily life…

They asked me what my personal wish was and I said it was for them to build me a robot. I remember writing the speech with my brother, Steven. When we got to the robot bit, he said: ‘you can’t say that…’ And I said, I can and I will. So we put it down. And I suppose we were naive because we thought a robot might be built and given to me on the spot. What happened was that Trinity College offered to begin the build, and we started working closely with them… and then we saw that it is a long process!

 

Robbie the Robot was unveiled by Trinity engineers in March 2014….have you had a chance to try out the prototype?

Well Prototype I is the physical shape of him…it doesn’t really do anything yet, so the next stages are about getting it to do the things I want it to do. My father says it’s like a shopping list…you upgrade it every so often.

 

What do you want him to do?

He’s going to do all the basic things that you would take for granted. He would pick up things that I would drop, open doors, get me a drink from the fridge…small things like that.

 

So Robbie will exist independently to you, obeying your instructions…

Yeah, I call him the ‘slave without emotions’ – I think that’s the best way to phrase it!

 

I think every woman would want someone like that in her life!

I know, right? But seriously…in fifty years’ time, everyone will have one. They’ll look back at me challenging them to build them one at the United Nations and think: that’s not much of a challenge!

 

Joanne, what things can you not do, that frustrate you?

Well, I suppose I never really look at things that I can’t do. Because that would put me down, you know, make it into a bad day. I try never to focus on that aspect, ever…and if I do start thinking that way I consider it a small blip. I don’t know, I suppose the worst thing is not being able to play sport, but I exercise that by being an obsessive sports fan…some would say stalker! There are always ways around everything.

 

No Limbs, No Limits is about you, but it speaks to everybody. Does that weigh quite heavily on your shoulders…your very personal life up there on a big screen for all to see?

Well, we never really saw it as that big of a deal…for me, it’s more about that awkward moment, where I can’t go to the cinema because I might have to see my own trailer and I’d be cringing with embarrassment. But as my father would say: ‘pressure is only for tyres!’

 

What do you do to take the pressure off…are you a TV addict?

Well, I like the soaps and Keeping Up With The Kardashians, because I enjoy seeing that kind of life. People give out about it, but if you’re having a down day, you can watch it and have a nice feeling after it. And I always have this joke with my father that I’m gonna be fairly famous myself one day, that I’m going to have fans lining up on the street wanting my picture or my autograph…

 

But you’re famous already, Joanne! People must regularly stop you on the street…

They always do, actually, which is fairly funny…and I love it when people my own age stop me; I like being famous amongst my own peer group. My big hope would be that if I went abroad and was recognised there. Then I’d feel I’d really made it!

 

The last time we talked you had a bit of a crush on somebody. Who’s the current crush?

The last crush – that’s so 2012! Em, I don’t know, I think I’m too busy to have a male species in my life…they’re weird anyway; I mean, come on, who really wants them? I have Robbie – he’ll do me fine for now! Joanne O’Riordan is eighteen. She can type thirty-six words per minute. On her phone, she stores a list of ways to phrase sentences more positively. She is a columnist with the Irish Examiner newspaper. She has changed how people with disabilities are perceived not just in Ireland, but globally. She stands twenty inches tall.

 

 

 

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