Interview with Justine Clark

Winton resident and WQPHN Consumer Advisory Committee Member

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Western Queensland PHN are celebrating Disability Action Week by shining a light on lived experience and the powerful voices within our communities. Meet Justine, a proud community member who is passionate about helping others understand that not all disabilities are visible, and that kindness, respect, and inclusion can make all the difference.

For Justine, connection comes from the relationships she’s built throughout her life through family, school, and friendships. “I feel connected in a little way to my community because I am related to lots of them, I went to school with them, and I am friends with them,” she shares.

Her message for Disability Action Week is simple yet powerful:

“We are the same as everyone in the world, we just have different needs, but we still wish to be just normal. We all have different types of disabilities, and some are visible and some are invisible. Please choose your words carefully and respect us and our families. Please walk beside us, don’t walk in front or behind us, we want you to walk beside us for support and strength.”

Living with an invisible disability has brought both challenges and lessons. Justine hopes more people will take the time to understand that disability is not always something you can see. “One day you might see me in a wheelchair, and the next I might be walking, but that doesn’t mean my disability has gone away. People have said some not nice things, and that can be very hard. Please be careful of what you say, as every person’s disability and experience is different.”

When sharing her story, she doesn’t want sympathy, she wants understanding. “I want people to know that invisible disabilities are real, and that’s what’s most frustrating. I wish people wouldn’t say things like, ‘Oh, you were in a wheelchair yesterday and now you’re walking.’ That cuts deep. What they don’t see is the effort it takes just to go out, how I have to prepare myself, and that I only go out on my very good days.”

There have been times when Justine has felt excluded, especially when communication becomes difficult. “I feel disconnected a lot as I’ve lost the ability to communicate the way I used to. I loved to help, and not being able to do that makes me feel disconnected. Now, we just don’t go anywhere that I don’t feel included or accepted.”

Looking ahead, she hopes to see more accessibility in community spaces and local stores, and more people with lived experience included in designing services, policies, and safe spaces.

“I really believe more people living with disability need to be involved in creating policies and services. Someone sitting in a high-rise building doesn’t always understand what it’s like to live with a disability or what’s available in remote communities. It’s not a one-size-fits-all approach, that’s why lived experience is so important.”

She’s grateful to organisations like WQPHN for creating opportunities for lived experience voices to be heard. “WQPHN has given me the ability to speak about my disability, my journey, and to get my story out. I am grateful for them allowing me to tell my story.”

If she could create one change in her community, it would be a safe and inclusive space where people can come together to share their stories without fear of judgment. “I’d love to create a place where people with disability can connect, be heard, and not be spoken about afterwards. I’d also love to speak with community groups about what it’s really like living with an invisible disability, how it affects my family, my mental health, and my day-to-day life. People see me out and think I’m fine, but inside I’m fighting a battle.”

Her advice to organisations is to slow down, listen, and treat every person with respect.

“Give us a chance. Communicate slower, don’t push, and talk to us like people. If someone looks lost in your shop or at a function, stop and check in, they might just be overwhelmed. Think about how to make your space more welcoming and accessible. Small changes, like leaving room for wheelchairs or having a reserved area for people with disabilities, can make a big difference.”

When reflecting on her journey, Justine becomes emotional, proud of how far she’s come, but honest about the challenges.

“I am proud of my family; they’ve had to adjust so much. I’ve had many setbacks, but I’ve learned how to get back up. I’m proud that I’ve spoken about my disability and my struggles, and that I can now share my story to help others understand invisible disabilities. I’m thankful to my husband, daughter, extended family and friends who have walked beside me, cried with me, laughed with me, and helped me stay strong.”

Through her courage, honesty, and determination, Justine reminds us all that inclusion begins with communication, compassion, and connection and that when we walk beside one another, we build stronger, more understanding communities.