Changing the stigma around disability

If someone was to say to you, "I've got a disability" what would your immediate reaction be? Would it be one of sadness or pity? Don't worry if it is, it's common - but it's also what we, as a Network and more broadly, a society, are trying to change.

Across Sydney Children's Hospitals Network, there are more than 160 staff and thousands more patients and families who identify as having a disability. These disabilities range from physical, intellectual, mental illness and sensory and while it is easy to assume that these disabilities would be noticeable, more than 90% are in fact, invisible. 

Today, on the International Day of People with Disability (IDPwD), it is a chance to increase public awareness, understanding and acceptance of people with disability and celebrate their achievements and contributions.

Disability isn't about what you can't do, it's about making the most of what you can and across the Network, there are some pretty special people who are doing just that. Here are their stories.

Maddy and Briella's story

Maddy and Briella were both born with diastrophic dysplasia, a rare genetic condition that affects cartilage and bone development. Both girls were born with cleft palates and developed cauliflower ear, they are short statured and their breathing has been restricted because of their small ribs. They have had their challenges, sure, but their disability hasn't stopped them from living life to the fullest, as mum, Nicole, shares.

"Today, we were having lunch in Parramatta Westfield food court with both Maddy and Briella in their halo traction wheelchairs when a lovely, kind, but very ignorant elderly man approached me and asked "are you a social worker, or are they yours?"

Initially I was taken aback, but he seemed genuinely nice, and his questions were not coming from an ugly place - so I decided to answer politely "yes they are mine".

"Do you mind if I ask what condition they have?"

I responded "they have a form of dwarfism called diastrophic dysplasia".

It was clear that his experiences and perception of disability were only negative, and he said to me sadly "I'm so sorry".

"Don't be, it's a good life," I replied cheerfully.

"It could be better" he responded.

"It could be worse" I told him.

It made no sense for me to be upset by this interaction, he meant no harm. The little sadness that I did feel was for him, that life has taught him that disability is a tragedy. I know others may have been offended by the questions - and they certainly were confronting - but yet I know that the only solution to ignorance is education.

Even with a disability, we are still smiling. Even after six months in hospital, we are still loving life. Even in halo traction, these monkeys are still attempting to ride bikes.

Life with disability is still life worth living. And not just existing, but living fully. Full of smiles and joy and laughter. Full of games and love and friends. Full of excitement and anticipation.

We have a good life. No, we have a great life. We are extremely blessed."

Renee's story

Renee was born a happy, healthy baby girl but when an infection took hold of her tiny heart, her whole world changed.

Doctors thought Renee had picked up a run-of-the-mill germ and put her on a course of antibiotics but as the weeks went by, Renee became sicker until she was so unwell that she required hospitalisation.

A scan of her heart discovered that the infection she had was so severe that it had effectively eaten her aortic valve. Her mum, Robyn, was told to prepare for the worst.

"We were told that Renee wouldn't survive the weekend," Robyn said, "but somehow she did."

Eventually, Renee's condition stabilised and at 14-months-old she underwent her first of several open heart surgeries to repair her heart. The operation went well and with daily medication, Renee was able to go back home.

The relief was short lived though. Just two months later, Renee contracted a strain of meningitis and was back in hospital once more.

The infection, that is hard enough to deal with for a healthy child, hit Renee even harder. She suffered a bleed on the brain which caused a hemorrhage, blood clot and a stroke.  

For the second time in her short life, her future was up in the air.

Renee underwent neurosurgery and had half of her skull removed to alleviate the swelling. She then spent the next four weeks in a coma.

Renee's mum never thought she would see her little girl walk or talk, but she did. After four months in hospital, Renee was discharged home and Robyn made it her mission to give Renee the very best chance possible.

"I wasn't going to give up hope, I made sure we did every type of therapy. We did physiotherapy, occupational therapy, I taught her sign language so we could communicate and slowly, she began to improve," Robyn said.

The life changing moment was when Renee was five-years-old and started walking and talking on her own.

"She is truly a miracle child," Robyn said.

Since then, Renee has come leaps and bounds. Her condition has caused lasting weakness in her right side, some intellectual delay and poor vision in one eye but Renee has let that stop her, and has gone on to become a valued and highly-respected member of our Volunteers Department.

Starting as a volunteer five years ago, Renee now helps to manage our Sibling Care every Tuesday, Wednesday and Thursday - a job which she adores. Her role involves minding the siblings of children in hospital, providing social support for parents as well as offering a place for parents to relax or unwind with a cup of coffee.

"I love working in sibling care, I can help mothers and fathers through their tough times because the stuff they’re going through, I’ve been through myself,” Renee said.

"I can’t imagine working anywhere else.”

For Renee, it is the support from Volunteers Manager, Jill Jenkins, that has made her experience so positive.

"Jill is always there, no matter what I need, and she doesn't treat me any differently," Renee said.

"Jill, the people I work with, my friends, they all help and support me. They don’t just try to take over if I can’t do something, they take the time to teach me.”

Her mum couldn't agree more.

"Jill and the Volunteers Department have just been fantastic, they gave her a chance when a lot of other people wouldn’t,” she said.

Renee's love of what she does has pushed her to overcome some of the barriers of her disability, including learning life and travel skills so she is able to get to work on her own.

“It has taken a lot of hard work for Renee to get to where she is today but she really has that grit and determination to achieve anything. She was born with that fighting spirit and when she puts her mind to something, she’s unstoppable,” Robyn said.

Ibi's story

"I have been working at Sydney Children's Hospital, Randwick for 14 years as the Waiting List Support Officer in the Admissions department.  I have a disability called Spina Bifida that requires me to use a wheelchair.

Within my time here, I have had wonderful managers who have all been very understanding and considerate of my physical needs within the work environment, any alterations needed (for example, the space needed at my desk) have been done without any problem at all.

I have also recently been invited to be a member of the Disability Diversity group formed at SCH this year.  The group was formed to have members working together to develop new strategies for the future for patients, families and staff members so that the organisation can become a more accessible and considerate place for people with disabilities. It's wonderful to be able to contribute to that.

One of my proudest moments that I have had over the years, is when a child turned to their parent and said, “Is that lady a doctor in the wheelchair?” What a privilege! 

It makes me feel proud to be seen by the kids as someone with a disability who works here.

Since working here, I have also become a parent myself and learnt to face many other challenges besides work.  I have learnt (and am still developing) my ability to speak up when I need help and/or have concerns.

My greatest wish would be that the community has better understanding of persons with a disability wanting and needing to be an active member of the community/workforce.

I'd like to see more exposure in the workplace, so that they can see we are the same as everyone else and we want to lead as similar life as possible. We may look different but we have the same needs and wants."

Julie's story

When Julie Charlton was born, no-one could have predicted that she would become a world-class athlete. But 19 years on, she has gained international recognition in athletics, winning medals for Australia in javelin, discus and shot put.

This is what defines Julie – not her disability.

Julie was born with a condition known as Spina Bifida, a birth defect that results in the spinal cord not developing properly. For as long as she can remember, she has been visiting Sydney Children’s Hospital, Randwick for treatment and management of the condition, which has left her wheelchair bound.

There is no denying that throughout her time growing up, Julie faced a few more hurdles than most but she has never once let that get in the way of her dreams.

From a very early age, she had her sights set on representing Australia in wheelchair sport and through hard work and perseverance that is exactly what she did.

In 2016, Julie travelled to Prague, Czech Republic, to compete in the IWAS (International Wheelchair and Amputee Sports Association) Under 23 World Games.

Of the 150 competitors from 50 different countries, Julie was the only Australian entrant and while there, became the World Champion seated javelin thrower, earning herself a new Australian record. She also won a Silver Medal in the discus and a Bronze Medal in the shot put.

For Julie, this was one of her greatest professional achievements and one of the things she is proud to tell people when she talks about her disability.

In addition to her passion for sport, Julie is also a passionate advocate for people with disabilities.

“My love for helping people drove me to want to become a public speaker. I want to be able to share my story with people across Australia so that hopefully one day, we can live in a world where disability isn’t ‘scary’,” Julie said.

“I want people with a disability to know that if you set your mind to something, you can achieve pretty much anything and that if you have a passion for something, no matter what your capabilities, just do it.”

The need to change the way society views disability has been a driving force in Julie’s determination.

“We are people, it’s as simple as that, we are people and I will continue to fight for what’s needed for the disability community,” Julie said.

“People with disabilities want to be treated with respect and dignity. We want to be treated fairly and have the same opportunities as everyone else.”

"We have goals and dreams and we should all be able to achieve our dreams without barriers.”