She beat the Budget: The extraordinary, awe-inspiring and humbling story of Joanne O”Riordan, who was born with no arms or legs… but with the heart of a lion
Like most teenagers Joanne O”Riordan loves playing music, going to football matches and texting her friends on her mobile. But the difference between this teenager and others is that Joanne this week single-handedly forced the Government to tear up its Budget plans to cut disability allowance for young people.
Within hours of the cuts being announced, the 15-year-old – who was born with no legs or arms – released images of Taoiseach Enda Kenny promising her that he would not touch the disability allowance.
The footage had been taken during a pre-election visit to Joanne”s hometown in Millstreet, Co. Cork. The Taoiseach”s seemingly sincere pledge on camera made headline news.
Tiny tot: Joanne with mother Ann aged just one
Less than 24 hours later, a humbled Mr Kenny told the Dil that disability allowances to new claimants as young as 16 would not now be cut.
“The Government doesn”t get everything right all the time,” he said as he came under fire during Leader”s Questions. “There”s an issue here that is of great sensitivity and we”re reviewing it on that basis.”
In fact, they were reviewing it because of this singular young woman.
Joanne is one of just seven people in the world who suffers with a rare condition known as total amelia. She also has scoliosis, or curvature of the spine. None of this fazes her.
Her courage this week was “all in a day”s work” for the bubbly transition year student and GAA fan who has since laughed off all the plaudits she has received from disability groups and opposition politicians.
Condition: Joanne was born with a rare condition called total amelia. Her aunts Mary and Eileen customise all her clothes
First picture: Joanne just after she was born
“Please don”t call me an inspiration,” says Joanne. “I hate it when people say stuff like that to me. This isn”t about me anyway, thankfully my family has an income and we can pay for things, but there are loads of people who desperately need the disability allowance.
“I hope things change for them because not everyone can come forward and speak their mind.”
Yet everything about this modest yet tenacious teenager”s attitude to life is so positive it”s hard to think of any other word to describe her but “inspirational”. Despite having no limbs, Joanne insists she lives a “pretty normal life” and loves nothing more than going to school and hanging out with her friends.
“I”ve a friend for everything,” she says. “One takes me to see Cork playing football most weekends, another who is mad into music and one more friend who comes to parties with me.
“I don”t want to be treated any differently, I am the way I am and that”s it, there”s no point in being depressed over it. I could sit in my room crying all day but that”s just a waste of time. There”s nothing I can do about it so it”s better to get on with it.
“I go to discos, I have been to lots of parties, I wear make-up, I have lovely clothes… and when I leave school I”m going to go to somewhere like New York. I”ll either be a journalist or politician.”
Class act: Joanne on her first day at school
She credits her parents with her confidence and independence because they have always treated her equally.
The youngest of five children, her life at home is very normal. “Me and my sister Gillian kill each other most of the time – but we are also great friends. This is a crazy house sometimes but it”s no different to anywhere else.
“My brothers love throwing me about the place but I”m strong, too, and I”ve learned to be able to pin them to the wall with my high chair, ” she says.
“I give as good as I get. They don”t get away with anything… but I also milk it when I”m looking for sympathy.”
It”s hard now to imagine that things could ever have been difficult for the O”Riordan family when they learned one of their five children had an extremely rare condition.
Mother Ann admits they were “devastated” when Joanne was born. However, she now praises her for teaching the family how to live life to the full.
After giving birth to four other healthy children, Ann and her husband Joe were “clueless” about what to do. “I had just nine weeks to go in my pregnancy when I had a scan that revealed Joanne was going to be born the way she is.
“I got a terrible shock, and so did Joe. It was extremely difficult to take in, just like any new mother who is told there is something wrong.
“Nothing felt different in my pregnancy with her. All my previous bumps were small, but she was tiny: I remember asking the doctor was that normal. He believed it was so I didn”t give it any more thought.”
Weighing just 1.8kg (4lbs), Joanne was born at the then Emyvale Hospital in Cork by Caesarean section.
“I didn”t see her properly until the next day,” says Ann. “I remember looking at her and thinking, “What will she ever be able to do”.
“She was so small… but she had a gorgeous little face with a button nose and little tiny eyes. When we wrapped her in a blanket she looked just like any other baby.
“But we really hadn”t a clue what to do because her condition is exceptionally rare, so we came home and started to give it a go.”
Bonny: Joanne with father Joe. She was named after her parents, Joe and Ann
Joe, who works as a welder, started life with his youngest daughter by giving up work for three years to support Ann.
They decided to call her Joanne after their names, Joe and Ann.
“She was a special little baby,” says Ann. “The other four just got on with it: they were amazing, how much they loved her.
“But it was a stressful time, too, in terms of managing her because all the things I was used to doing with babies were no longer valid.
“I had to learn how to change Joanne”s nappy, and it was weird because there were no legs to lift so I didn”t know what to do.”
She adds: “Eventually, I found my own routine. I got so used to it that now when I change my grandchild”s nappy I find that strange because she has legs. So you can really get used to anything in time.
“Joe”s sisters, Mary and Eileen, are great at knitting and sewing so they did all the clothes and blankets for Joanne. I was able to give them baby clothes and they could re-adjust them to fit her properly.
“We started out totally blind, we were just an ordinary family from Millstreet who hadn”t even gone abroad on holidays.
Proud day: Joanne made her first communion with classmates from Millstreet in 2004
“I”d take Joanne out for a walk in the buggy and people would do a double take when they saw her because she was just this tiny little baby with no legs and arms.”
As Joe and Ann came to terms with Joanne”s condition, her siblings, Denis, now 30, Danny, 28, Stephen, 27, and Gillian, 24, fell “instantly in love” with her. Stephen, who received rave reviews for Forgotten Maggies, his recent TG4 documentary about the Magdalene Laundries, is now in the advanced stages of making a documentary about his sister”s life.
“They were a great help,” says Ann. “Children don”t see the things we do, they are so innocent, but they just loved her and played with her all the time. I used to worry a lot because as she got older they would get rougher with her during play time and throw her in the air.
“I would be freaking out but Joanne loved every minute of it so I had to get used to it.
“She was a gentle baby who loved a laugh, she was easy enough to manage. Up until she was two years old, we had a high chair for her and buggy, but she hated both of them. Since then, she has got a wheelchair she can drive herself and a specially-made high chair.”
The bond between mother and daughter is obvious, and while Joanne has her sights set on travelling the world after she completes her Leaving Cert in 2014, Ann admits she would be lost without her.
“Me and Mam get on great but we kill each other, too,” says Joanne. “She is my full-time carer but she gives me so much independence. If it wasn”t for her I would not be able to write or feed myself. I can do a lot of things.
“Mam and Dad just gave me pencils, crayons and toys so that I could get used to them.
Read: Joanne also uses a laptop – and is enjoying her school year
Notes: Her parents urged Joanne to write – and she also texts using her mouth
“Instead of teaching me how to walk, Dad taught me how to roll. He would throw sweets on the floor and we would have a race to see who could get them first.
“Mam gave me a pen to see what I could do with it. I have the use of my lips and my chin so I eventually learned how to write. Mam said, “I can”t do this for you, you will have to do it yourself your way”. And so I did.”
Teaching Joanne how to do things for herself has proved hugely rewarding for the family. “I never really learned I was different. When I first went to school the kids were saying, “What”s wrong with Joanne” and staring at me but I have always preferred to be straight with people and to just let them ask me what they want to, or I will tell them.
“It doesn”t make any difference to me. This is the way I am and I”ve accepted it, I don”t know any different. It”s not fair on kids when their mothers say, “Don”t be rude and stop looking at her”. They are not being rude; kids just say what they see.
“I try and make it easy for people to talk to me about it because I”m happy the way I am.”
Using her mouth and lips, Joanne demonstrates how she texts her friends on her new iPhone.
“I sort of do the same with my homework on the laptop. I”ve programmes I can download and work on,” shesays. “When I”m not studying I love sleeping and chilling out: I”m the biggest daydreamer you will ever meet. I always have my phone with me, which means I stay up late texting my friends so I”m normally wrecked inthe mornings.
Fan: The youngster was delighted to meet Jedward last year
“Mam will come in around 8am to wake me up before bringing me to the bathroom where she puts me into a bath to give me a wash and does my hair. She also dresses me before carrying me to my high chair at the kitchen table, where I can eat my own breakfast. I am a bit of a fussy eater.”
Joanneshows how she eats her food by placing it on a tiny undeveloped arm to the left side of her body. She can also grab a cup or bottle with her mouth to knock back a drink.
“Mam then helps me with brushing my teeth and doing my hair and she”ll take me to school in the car with my wheelchair.
“MillstreetCommunity School had special ramps put in for me so, once I”m at the gates, Mam can leave me to it. I”m in school from 9am to 4pm, Monday to Friday.”
It was at Joanne”s school that she had her famous meeting with Taoiseach Enda Kenny while he was canvassing in January.
Sports scene: Getting an autograph from rugby star Paul O”Connell
“There is something about him that I love, I”m fascinated with him and I don”t care what anyone thinks of that.
“Tome he is the underdog, and I always love the underdog. He tried so hardto get into government and he never gave up, even when people laughed at him.
“I have met a lot of famous people and I really milk it with my condition sometimes. Ihave met One Direction, Jedward and Gerry Ryan, so I told Mam if Enda ever comes to Millstreet that she had to introduce me to him.”
But at the time Mr Kenny took a trip to Millstreet, Joanne was sitting her mock Junior Cert exams at school.
“I didn”t care what I was doing,” shesays. “I was going to meet him and that was it, my teacher let me go tosee him, so I got my way in the end. I normally do.
“Iwas a bit nervous but I made myself known to him, and that”s when I asked him would he cut my allowance if he got into power, which he said he wouldn”t do.
“I bethe regrets meeting me ever since but I still love him and I know he”ll do that right thing. I want to make it clear that I don”t have a problemwith Enda, I have a problem with the decisions the Government made.”
Sohow does she feel about shaming the government into backing down on itsBudget plans Joanne says she hopes for the sake of other people that it won”t happen again.
However, she still has an axe to grind with the Taoiseach over another promise he made to her during the meeting in Millstreet.
“Enda also promised me that if hegot into government he would write to all the county councils and ask them to let him know where their towns need ramps and he would get the work done.
Talkative: Her mother Ann says “there”s nothing wrong with her tongue!”
Hound dog: Family pet Sally is a welcome distraction from homework
It”s a family affair: Joanne”s niece Kylie goes in for a kiss
“I don”t think he has done that either, which is a shame.
“He is a good man, though people think he”s a nerd, but I think he is decent enough.
“I do believe he wants to make a change but it must be so hard when there is no money there to do all those things he promised.
“I”d say he got into government and nearly had a heart attack when he saw the books.”
WhenJoanne isn”t doe-eyed over the country”s leader, she is batting her eyelids at the Cork football team or Harry Styles from One Direction. “Imet One Direction and I asked Harry for a kiss, I knew he couldn”t say no so I grabbed the opportunity,” she says.
Joanne has her tickets bought for One Direction”s sold out show in the O2 in January but feels a lot more could be done to improve facilities for people in wheelchairs. “There isnot enough space for wheelchairs at these events – and there”s never enough tickets, either. My Mam had to sign me up as a member of the O2 because we were always finding it hard to get tickets, and she would have to pay the full amount too even though she is my carer.
Watching: As the youngest, Joanne sometimes gets to hog the television
“My family are massive sports fans, so I go to the Cork matches at Pairc U Chaoimh every weekend and there is good wheelchair access for me near the pitch but that is an exception.”
Proudly showing off a photo of her with Sen g hAilpn, she adds: “He”s kind of cute”.
But Sen g will have to join the queue as Joanne is keeping her options open.
“There is one guy down the road that Ihave a crush on, I think he knows, too,” she says. “I don”t have a boyfriend but I would love to be able to have children and get married when I”m older. As far as I know, I can have kids but we”ll have to waitand see.”
School-time: Joanne at school in her hometown
Getting dressed up for a night on the town with her friends is also something she enjoys. Her large pink bedroom is plastered in Jedward and One Direction posters. Her wardrobe is bulging with pretty teen dresses, shimmery tops and jewellery.
“Ilove my room,” she says. “I love clothes and dresses but I also just love wearing my casual tracksuits. I can give clothes to my aunties Maryand Eileen, and they alter them for me and when I”m going out my Mam”s sister, Yvonne, does my make up.
“I have a team of people around me,” she laughs.
On her large double bed, Joanne points to a safety gate, saying it”s “in case I roll out in the middle of the night”. Joanne uses a high chair but this one has been specially made by the Rehabilitation Centre in Dn Laoghaire.
The family now have an continuing relationship with the Rehab Centre as well as Crumlin Children”s Hospital.
“We didn”t do anything for a long time after she was born because we were just learning to manage the daily things,” says Ann.
“But eventually we got in touch with a family in England who have a daughter, Tina, with the same condition as Joanne.”
Having made contact with the Stack family in south London, the O”Riordan”s began to plan their first ever trip abroad.
“Tinawas 12 at the time so they were way ahead of us. We got a number for them and they invited us over,” says Ann. “We had never left Ireland before, so we have Joanne to thank for getting us out of Millstreet and seeing a bit of the world. We have since been on holidays to France, Spain and Italy.
“We travelled to Britain when she was two and stayed with Tina”s family for one week. When I think of it now I was so cheeky, just to arrive at a stranger”s house and stay for a week but I really wasn”t thinking, sure Ihadn”t even booked a flight before.”
Theweek with Tina Stack”s family was “priceless” and Joe and Ann learned everything they needed to know about giving Joanne as normal an upbringing as possible.
Change: Footage of Enda Kenny promising Joanne that he would not touch disability allowance caused a change in Government plans
“They even made a video of Tina”s first two years so that we could give it to the health board here, it was just totally invaluable and we are still in touch with them.”
She adds: “Tina”s family told us to give her things and let her try and use them which would encourage her to move whatever parts of her body that she can.”
The O”Riordans were now passing on their experience to medical staff here. “I”ll never forget what that family did for us,” says Ann.
“We have also met another 40-year-old woman, Monique from Australia, who is an artist, and another child, from Nigeria, with total amelia.”
Joanne”s family had the option of sending her to a school for children with special needs but chose not to.
Instead, Joanne attended the local crche before going to national school in Millstreet.
“We are lucky we live in a small town where everyone knows us because we can explain things to one another properly.
“Ididn”t want Joanne to be treated any differently, she has her wheelchair that she operates herself and all I have to do is bring her to school and she can manage the rest herself. She doesn”t get any special treatment and if she has a problem, she won”t be long telling you because there is nothing wrong with her tongue.”
Anumber of years ago, Joanne wrote to Cork County Council to ask it to place bollards on the town”s footpaths which would prevent cars from parking on the kerb. This would enable people in wheelchairs or pushing buggies to be able to move along the footpaths without getting stuck.
Timetable: Millstreet Community School has installed ramps to facilitate Joanne”s access to all areas
“It worked,” she says. “They now have bollards everywhere so I can often go off down town on my own.”
Having passed her Junior Cert last year, she decided to go into transition year, and now works on the school paper.
After her Leaving Cert, Joanne plans to either move to Dublin or the Big Apple.
“I”ve loads of plans for the future, and I”ve a lot of work to do so that I can do all the things I want to.
“I”d love to do TV because I”m a great talker, everyone is always telling me I should have my own show. Maybe someday I could have Ryan Tubridy”s show, I like him but I think I could do a lot better.
“Perhaps I”ll be the next Oprah. Either way, I”m going to give my life my best shot.”