Little people can change the world

On the heels of International Dwarfism Awareness Day (October 25) and as we approach ‘International Day of Persons with Disabilities’ (IDPWD) celebrated on December 3, Mary O’Brien meets with Róisín White, mother of Lia, an eight-year-old child with achondroplasia and Pauline Cotter, (67), who has the same condition. They share their stories and how the world as we know it could be more accessible for and accepting of little people.

Lia White is a typical eight-year-old; confident, bright and inquisitive, she goes to school and loves princesses, drawing and singing. Her family and friends are her world and she is loved and happy. But while Lia might act like any other fun-loving child, as her peers around her grow taller, Lia’s challenges grow bigger, because while today we’re taught to celebrate difference, the world still has to catch up, particularly when it comes to rare conditions like dwarfism. Lia, who lives in Ardfield in Clonakilty, has achondroplasia, the most common dwarfism-related condition – estimated to occur in approximately one in every 26,000 births – that results in abnormal cartilage formation, which means she has shorter arms and legs. The average height of an adult with dwarfism is just over four feet. Eighty per cent of people with the condition are born to average height people, such as Lia’s parents, Róisín and Kevin White. Aside from the physical barriers like being unable to reach door handles, light switches and toilets, people with dwarfism and other disabilities unfortunately continue to face stereotyping, stigma, and discrimination. While it’s never ok to point and stare and the use of the word ‘midget’ to a little person is very offensive, Lia’s mum Róisín says it’s normal for children to be curious and direct and she welcomes questions about Lia’s condition. “I want a parent to approach me and ask me how to explain it to their own child,” she shares. “Knowledge makes us all better people and it’s really important to me to help make the community and world Lia is growing up in more understanding and accepting of difference.”

Not too far away in Schull, Pauline Cotter is a 67-year-old woman with the same condition as Lia. Although little in stature at 4ft 3in, Pauline is one of West Cork’s biggest, best-loved personalities, hugely respected and appreciated for her contribution to her local community, particularly in youth circles. While her childhood couldn’t have been more different from Lia’s – Pauline grew up in the Good Shepherd Convent orphanage in Cork, a place that also housed an asylum and laundry where hundreds of women and children were held against their will – because of her condition Pauline has already lived through many of the challenges and barriers that Lia will face unless the world becomes a better and fairer place for people with disability.

Pauline

A director and founder of the Fastnet Film Festival, an annual event that has helped to shape Schull and place it on the International stage over the past 15 years, Pauline Cotter is a remarkable woman, her achievements particularly inspiring because of her tough beginnings.

Born in 1956, Pauline spent the first four years of her life in the Bessborough Mother and Baby Home. Taken from her mother – also a dwarf – at the age of four, Pauline still has a clear picture in her mind of the day when the “big bald man in the big black taxi” came to take her away. She spent the next 12 years of her life in an orphanage, starved of love and kindness. “It’s only in hindsight that you realise what normality is,” she says. “The orphanage was enclosed so I didn’t know any different when I was in there.” While she doesn’t want to dwell on that period of her life, Pauline does recall how the children were split into groups, each under the leadership of a nun, in order to discourage friendships. “If you got too friendly with someone, you’d be moved to another group,” she says. 

Once a year, Pauline’s mother, who she describes as “an extraordinary woman who had a very difficult life but someone who I didn’t have a mother-daughter relationship with” would travel up in a taxi from Ballydehob with her brother, using the money she had saved, and take Pauline out to dinner. “There came a time when I didn’t want her to visit me anymore,” shares Pauline. “It was hard enough being a dwarf but two of us out together in public was very difficult for the teenage me.”

Pauline was sent “outside” to school when the government took over the running of the orphanage from the nuns and in the ensuing years she was fortunate to be taken under the wing of a kindhearted gym teacher at her secondary school. “People can be cruel, especially back then when there was no education around disability but, rather than exclude me, Nollaig got me to run the sports competitions in school,” she shares. When Pauline reached 16 and was allowed out of the orphanage at weekends, the same teacher and her boyfriend would collect and take her out for the day. When they got married and had a child, Pauline became the babysitter for Vivienne Jnr. “The Nathans became the closest thing to family I knew,” she shares “and are still very close friends.”

A bright student but told by the orphanage that they didn’t send people like her to college, Pauline applied for a job in what was then known as the Irish Permanent Building Society (now Permanent TSB), where she stayed for seven years, becoming the assistant supervisor in the mortgage department. “Eddie O’Flynn was the manager there at the time, an extraordinarily kind man,” shares Pauline.

She moved from the hostel on the grounds of the orphanage (supposed to ease the transition from the orphanage into the ‘outside’ world) into a bedsit before moving into a flat with three other girls. “I was never so terrified in my life,” she recalls. “Moving from living with hundreds into a place on my own with strangers walking up and down the stairs.”

It was a difficult stage in Pauline’s life. While she made many good friends, she found that she couldn’t cope with being different. “I was drinking a lot, going to parties, staying out late. During that time, while I could laugh and drink off being different, I couldn’t accept it.”

Frustrated and angry with the lot she’d been handed in life, Pauline resigned from her job and spent a year hitching around Ireland on her own, sleeping in ditches when she had to and talking her way out of more than one terrible situation. “I think I was saying to life ‘come on show me your worst’” she says “until one day I reached a place of acceptance.”

She remembers that day very clearly. “I was staying in a friend’s room in Waterford. The sunlight was streaming into the room and I just had this revelation that I was alright, it was all going to be alright,” she shares. “In that moment I remember thinking ‘I’m 4ft 3 and there is nothing I can do about it, so make the best of it.’”

With that acceptance Pauline was able to move forward with her life. She got her job back in the Irish Permanent, staying there until she moved to Ballydehob in her late 20s to look after her mother after she suffered a serious fall. Her mother eventually moved to Mount Carmel Nursing Home in Clonakilty.

A few years later Pauline had a loving relationship with a taller-than-average height man and their son, Alan, an ‘average’ size baby, was born in 1988.

Unfortunately Pauline’s partner wasn’t as accepting of her dwarfism as she thought and the relationship ended. “As beautiful and strong a man as he was, he wasn’t as strong as I thought he was,” she shares without bitterness.

Pauline moved in with her uncle Peter and for the next 18 months – until she was awarded a council house across the road –  baby Alan slept at the end of her bed.

Over the years, Pauline and her son have both come up against ignorance and discrimination because of her dwarfism. 

However, throughout it all Pauline has remained strong. “It’s a rare situation where I would back down,” says the spirited woman. “I’m little enough, I can’t understand why people would try to belittle me further.”

She has taught her own son that while there is difference all over the world, the most important thing is how you react to it.

When Alan was young, Pauline remembers one incident that took place in the queue at a supermarket in West Cork when a little girl pointed at her and said ‘look mom there’s a dwarf’. The little girl’s mother reacted by slapping the child. “I had to respond,” says Pauline “so I went over and said to the little girl ‘you are right, I am a dwarf’ and I looked at her mother and said ‘you are wrong, sort out your own inadequacies’.”

The incident stirred something in Pauline. She felt the need to change the narrative on disability with the youth in her own community, so she got involved with the local youth group in Ballydehob. “The kids would ask questions about my dwarfism and I answered them. It wasn’t just about me, it was important for Alan’s integration in the community,” she shares.

Pauline moved to Schull over 20 years ago and today she lives in a specially-adapted house, gifted to her by friends for the remainder of her lifetime, with her dog, a Toy Terrier Russian breed called Rasputin. Like Pauline, he’s little, but large in personality.

“I’ve led a fairly nomadic life and this is the first place I feel I can really call home,” she shares, pointing out the adjustable countertops in the kitchen and lower-than-average handles on the windows and doors.

A gift from her late uncle Peter on his passing offered Pauline the opportunity to open a business in Schull called ‘@Your Leisure’, a games cafe and pool hall for the young people of the area, which she ran with her friend Marion O’Brien for eight years. These were the best years of Pauline’s life and it was during this time that the seed of an idea for a film festival was planted. “The downturn was coming, Schull was dying as a village and I knew we had to do something that would involve the young people of the area and all the creatives we are so fortunate to have in our community,” she explains.

Pauline called a meeting and a great number of people turned up including Maurice and Maria Seezer, the late Colin Vearncombe, Chris O’Dell, Helen Wells and Hilary McCarthy. “There were so many local people moving in film circles so that’s how the festival was born,” explains Pauline.

With the creative support behind it, Pauline was tasked with finding the finance to get the festival up and running. The little boy she had babysat all those years ago, Vivienne Jnr, was now an astute business man and he agreed to make the first donation, which was matched by business man Benny McCabe. An introduction to Michael and Kathleen Barry of Corona brought their important sponsorship on board and with the support of Bill and Judy Bollinger, Pauline had the makings of a short film festival. That very first year, well-known directors Jim Sheridan and Jack Gold got involved and since then there have been contributions from many other reputable and Oscar-winning directors in the film industry. Pauline is hugely grateful to Schull village and the festival’s patrons, sponsors and volunteers without whose support she says the Fastnet Film Festival would not have succeeded. 

Today Pauline has taken on the mantle of Director of Hospitality and she is one of the advisors to the current committee, headed by CEO Tom McCarthy. “He’s pedantic but brilliant,” she says laughing.

With her great sense of fun, and warm, straight-talking personality, Pauline is a people-magnet. Her friends, she admits, are her anchor, who have helped to ground her through the hard times.

“Initially your personality grows to shield yourself but eventually it becomes natural to you,” she shares.

She would like to thank all those extraordinary people who befriended and helped mould her into the ‘little’ fighter she is today.

Pauline has travelled all over the world with friends and while she has had to undergo spinal surgery in recent years and arthritis in her spine and hip now means she’s currently on a lot of pain medication, her hope is that one day in the not-too-distant future she will be well enough to visit her son who runs a business in Peru.

Her advice to little Lia is to find friends she can trust and who love her for who she is, be it magical or musical, whatever wonderful qualities she has.

“Never let your mind or anyone else tell you that you can’t do something” says Pauline, “because anything is possible.”

Lia

Standing at 100cm (3ft 2in) high, Lia White, age eight, has achondroplasia, a rare dwarfism-related condition which affects the growth of cartilage in her arms and legs and means she is shorter than her younger six-year-old sister; her two-and-half-year-old brother already stands at her shoulder. While Lia’s parents, Róisín and Kevin White, have brought their eldest daughter up to be strong and confident and accept her difference, as Lia gets older, this difference is becoming more noticeable to her and also to others.

“We’re very open about her condition and at home we talk about difference being great but, as her friends at school grow taller, she has been noticing more recently that she is the only person in school who is like her,” shares Róisín.

Each year the family travel to the Little People of Ireland Convention so Lia can meet other people who are little.

Dwarfism is not an intellectual disability or a disease and Lia does not have any serious physical complications due to her condition so the White’s live a regular life just like other families; but an incident at a local playground during the summer, where a younger child commented and pointed at Lia, brought home the challenges that lie ahead for the little girl. Afterwards Róisín made contact with the child’s mother who was very kind and receptive and promised to have a conversation with her child about little people and difference. Unfortunately comments, innocent or otherwise, are something that Lia will have to deal with more and more herself as she gets older.

“Achondroplasia doesn’t impact on our daily lives but we still have the challenge of protecting Lia from the ignorance that’s out there,” shares Róisín. “She’s only eight and in a cocoon right now so we know that we have to give her the tools to deal with situations like these herself in the future. It worries me much more than any health issues she might face.”

Róisín believes that change can start with just one person. “If I can change just one child’s perception on the playground or through this article, then I feel I’ve done something important for Lia,” she says.

Lia was born without any complications following a straightforward pregnancy. While achondroplasia was suspected by the doctor when she was born, it was a very difficult four months for the couple before they received a formal diagnosis.

“She was the most beautiful newborn,” shares Róisín. “It was never Lia who scared us…she was such an easy baby, to feed and to sleep. It was the world and the medical professionals, the negativity, that scared us. If it wasn’t such a battle for disability acceptance, everything would be fine.

“I remember other parents saying to us that in the future when Lia is older it will just be a part of your life, she’ll live an ‘average’ life just like everybody else.”

As a baby, Lia’s greatest difficulties were with gross motor skill development. She didn’t walk until she was over two and she had to have a lot of physiotherapy. Her speech was also delayed, as the fluid built up in the smaller-than-normal tubes in her ears, which affected her hearing. This was corrected and Lia now wears hearing aids; these aren’t noticeable and she will possibly outgrow them in the future. She doesn’t have any problems with her speech today.

She has smaller bones and a larger head than her peers, which puts pressure on her spine and joints. This, as well as sleep apnea, has been very tiring for the little girl. “She’s stronger now,” shares her mum “and she has outgrown the sleep apnea, but she has to walk and run twice the distance of average-sized people.” Lia has a flamingo pink wheelchair to help her with longer distances.

The West Cork Child Development Service and Enable Ireland have always provided great support. Róisín and Kevin were also in contact with disability activist Sinead Burke, whose parents set up the Little People of Ireland, from the early months of Lia’s life.

Lia attends Ardfield NS where she has a specially-adapted seat so she can sit at a table with all her peers. She also has access to an SNA. Door handles and toilets are difficult for her to access but otherwise she’s very independent.

“I do worry that she might have to carry around a step with her for the rest of her life,” says Róisín. “It wouldn’t take much for an architect or engineer to place things like ATMs, toilets and door handles just a bit lower to make them more accessible for Lia and other people like her.”

If we fail to adjust the built environment, from housing and transport, to schools and banks, life will always be more difficult for little people and others with disabilities.

“Ardfield NS has been fantastic,” says Róisín, who has been raising awareness about Lia’s condition through the school.

Lia is bright and funny and has lots of friends. She loves art and maths and would like to be a singer when she’s older. Her parents know there will be challenges ahead but their hope is that by having the conversation about dwarfism now the world will become more accepting of disability and Lia will be loved for who she is.

“If I could pick one word to describe Lia it would be loving,” says Róisín. “She wears her heart on her sleeve and wants to give everybody her love. I just hope she gets that back from the world.”