Supporting the 1 in 5

Across Sydney Children’s Hospitals Network, there are more than 160 staff and thousands of patients and families who identify as having a disability. These range from physical to intellectual to mental illness through to sensory impairment, but these disabilities don’t define them and they certainly don’t affect the incredible things they are able to accomplish.  

There are many programs across the Network helping patients to reach their full potential regardless of their disability, including the ChIPS (Chronic Illness Peer Support Group) which has helped support countless patients like 19-year-old Mia. Read her story below.

Mia's Story

“Many people think of disability as something that can be seen and something that only needs immense physical support and assistance. I live with two lifelong conditions, Inflammatory Bowel Disease (IBD) and Polycystic Ovarian Syndrome (PCOS) and International Day of People with Disability is a really important day for many people like me who battle illnesses that don’t have visible characteristics at first glance.

Recently, I’ve been really reflecting on how we, as a society, support people who have disabilities. Whether it be a physical, mental, medical, intellectual or sensory disability – we tend to be categorised as one group who all have the same needs, but this simply isn’t the case.

I’ve become extremely exhausted in trying to prove my worth when my life is often consumed by the many symptoms and side effects of IBD and PCOS. I feel like I’ve become a tick for an empty box in many workplaces. I often get feedback that I didn’t look like I had put myself together, or criticisms in the delivery of my response to questions, but the reality is- I am tired, I am fatigued, my hair is falling out and my eye bags are holding on for dear life.

I am expected to perform at the same capacity as other people but with a whole lot more baggage to carry.

A lot of people want to claim that they care, and it seems like a step into a greater future, I get a little excited every time that perhaps I am closer to everything I have ever dreamed of. People say they care, but my question to organisations and institutions is: what are you doing to support people like me?

An organisation that has made me feel cared for and supported is ChIPS (Chronic Illness Peer Support Program). ChIPS is a peer support program for people aged 12-25 with chronic health conditions, run by young people for young people and I have been really lucky to be a part of the program.

ChIPS is a place I know I can go to when I need to be heard, supported and loved. Being able to help other people with chronic illness and crafting various projects has given me a realigned sense of purpose which I am immensely grateful for.

A lot of people with disabilities don’t have this luxury so please, always approach with an open mind, be gentle and be kind. We need you to listen with the intention of understanding us and not listening with the purpose of solely responding.”

The Australian Network on Disability (AND) are a great resource for learning new ways to enable an inclusive practice for people with disability. Their guiding principles include:

  • Never make any assumptions
  • Always ask the person before giving assistance
  • A person’s disability and experience of disability is as unique as their fingerprints.
  • Be flexible and someone who is approachable and responsive.
  • Facilitate open discussion on their needs and strengths.

You’ll find more resources on their website

December 3rd is International Day of People with Disability and this year’s theme is “Building Back Better: toward a disability-inclusive, accessible and sustainable post COVID-19 World”. It is a day that gives us the opportunity to increase awareness and understanding of people with disability, and to celebrate their contributions.