No limbs, no limits for ‘pretty unique’ Joanne

I’M pretty fast,” Joanne warns. “Fair enough,” I reply, but really I’m just curious to see how she can text at all. Gripping that ever-present iPhone between chin and what she calls her left hand, she manoeuvres it onto the table and begins texting. With her upper and lower lip. And at a speed faster than I’ve seen anyone text. My jaw drops. She shows me the screen, a flawless message. I can only chuckle in astonishment. She laughs back — you can tell she enjoys that reaction.

But this is a mere party piece for Joanne O’Riordan, a 17-year-old from North Cork. Born with a rare condition, total amelia, which left her limbless, Joanne has been the subject of media scrutiny since her early childhood — and she’s now internationally renowned.

At 15, she single-handedly shamed Taoiseach Enda Kenny into reversing budget cuts to disability allowances. On the week of her 16th birthday, she spoke at a UN conference in New York on women in technology, receiving a standing ovation. It is just one of many forums she has addressed, and she is a popular weekly columnist with this newspaper. She was made Rehab Young Person of the Year at the People of the Year awards in 2012 and has made multiple appearances on the Late Late Show.

But as the subject of an intimate new documentary, No Limbs, No Limits, directed by her brother Steven, the world is finally going to see the full extent of Joanne’s astonishing achievements to date, including the private, which is possibly more impressive even than the public.

We are in the cosy kitchen of Joanne’s specially adapted Millstreet home, the result of a massive fundraising effort in the late 1990s when the public first became aware of her following an appearance with parents Anne and Dan Joe on Kenny Live.

Photographer Des knows Joanne well from matches — she is a fanatical sports fan — and the pair are trading wisecracks, she seated in her specially adapted high chair. My first time meeting her, I can’t help but register her appearance, that absence in the places I am conditioned to expect limbs, the slight torso which means she stands all of 20 inches.

I sit down beside her and a curious thing happens, though it takes some minutes to register. The root cause of my being there, her disability, vanishes entirely from my consciousness. In the absence of two arms and two legs, Joanne’s personality has evolved to fill the gap and then some; her impossible energy, her razor-sharp intellect, even her ribald humour, generate a physical presence most other people would be hard-pushed to match. I find myself doing no more than sitting down for an ordinary chat with a typical 17-year-old teenager and her mum.

“I’m only one of seven people in the world with total amelia but I go to regular school with all my friends in Millstreet,” she said. “I lead a normal life and that’s it. Just because I’ve no limbs doesn’t mean I’m going to stop myself doing different things. I still go out to matches, go out with my friends shopping, to Killarney, Mallow, Cork.

“We go out in town as well — ’cos we’re teens, that’s what we do. My friends always say, ‘I’d love to get you drunk’, but they always collect me,” she grins, nodding over her shoulder towards Anne.

“I remember Tony Ryan, the paediatrician, coming in the morning after she was born,” says Anne. “I think I told him go away. I can’t remember, I just wanted to be on my own. The next day, they brought her down to the room. I picked her up, put her into the bed and looked at her and thought: ‘What will you ever do?’ Because I could see nothing.

“We went home to four walls and you’re wondering: ‘Where do we go now, what do we do?’ We hadn’t a clue, we had no contact number, no contact name, only ourselves.”

The only two medical professionals she credits in those dark early days are health nurse Anne Buckley and Tony Ryan, still Joanne’s paediatrician to this day. “They were very good, they were the only two people who listened to us and even if we were talking rubbish, they still listened to us.”

Over the course of those tumultuous early weeks, someone from Reach, a charity for those with a limb deficiency, passed on a phone number. It went up on the wall, forgotten, until four months had passed and things weren’t getting any better. It was for the Stark family in London, whose daughter Tina, then 12, also had total amelia.

“We were fierce lucky, we were going to be left there,” says Anne. “We were getting absolutely nowhere here because no one believed in Joanne achieving anything.”

They travelled to London, their first time out of the country, and spent a week with the Starks. It was life-changing. They could see all Tina was capable of doing and, more importantly, learned how she had achieved those milestones.

“They told us Joanne would never learn to talk until she sat up,” says Anne. “They had something like a flowerpot made for Tina to sit up in so we got one made for Joanne. They gave us a videotape of Tina between the ages of one-and-a-half and two-and-a-half and it was only when we showed it to the health crowd here that they decided: ‘OK, we’ll give ye some help’.”

Armed with this new-found knowledge, the O’Riordans began a very fruitful relationship with the National Rehabilitation Hospital in Dun Laoghaire. Anne still sings their praises to this day. They helped produce all manner of gadgets that helped Joanne progress to where she is today, but the O’Riordans remain fiercely independent of the general healthcare system.

“Once we made that start, we went our own way,” says Anne, “and that’s the way we’ve lived the last 17 years but we were very lucky to have Professor Tony Ryan in Cork. We still have him.”

Joanne’s trip to New York to address that UN technology conference was special, not just for the “mental craic” crammed into her birthday week but because the subject matter is especially dear to her heart. She has called technology one of her limbs.

“Technology is my life,” she says. “Everyone thinks I use specially adapted technology but I have the same phone as everyone else, the same laptop as everyone else. They think I’m going to use voice recognition software.

“My brothers had a Nintendo, and I was always crying to have a go. Eventually they got sick of me and threw the controller at me. And I started playing,” she declares triumphantly. She graduated to an old desktop computer before she was three, and today operates an iPhone with her lips and ‘left hand’, as she calls it. She uses her chin and a mouth-held biro to work her laptop. She closed her UN speech by calling on the technology industry to make her a robot.

Just in case you thought Joanne was a one-off, her brother Steven is pretty remarkable as well. A theatre and film studies graduate, not only was he moved to make the powerful TG4 documentary The Forgotten Maggies, but he also went on to establish the Magdalene Survivors Together support group, and was in the Dáil with some of the survivors to hear Mr Kenny’s apology on behalf of the State.

Mind you, he credits his attitude to Joanne: “It came from her,” he says. “I understood exactly what they had to endure.”

Of No Limbs, No Limits, Steven says: “To be totally blunt, for the first time ever it will allow people to stare for all the right reasons. You get to see Joanne in all her glory: The good, the bad, and the ugly. It is an incredible story. Joanne almost turns the idea of having a disability on its head. What are the possibilities, it implies, for us able-bodied, if Joanne can achieve what she has? She also goes to England to reconnect with Tina for a little glimpse into her own possible future. And it also allows those people who supported her so generously back in ’97/’98 through bake sales, 20p in the bucket, and so on, to see how far she has come.”

And while Joanne is ostensibly the star, it is also the story of her parents, ordinary people who had to learn to do extraordinary things.

“We come from an ordinary family. Nobody has a special education or a silver spoon,” says Steven. “We never would have experienced disability in the family, especially such an extraordinary disability. Joanne has allowed us to become educated about the world, to stop and ask the important questions: How can we do something differently, not to get caught up in our own lives?

“I now have a greater respect for my parents and what they’ve done for Joanne. I would have to take my hat off to my mother, Joanne was her greatest achievement and she proved everyone wrong. You would have to say she is like a modern-day version of Brenda Fricker in My Left Foot.”

And as always, Joanne has the last word. “I’m not different, I’m not special, I’m just pretty unique because of my condition.”


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