To bravely go: Renay Barker-Mulholland on life as a First Nations woman with disability

FIRST Nations woman, visionary leader, and courageous advocate for human and disability justice, Renay Barker-Mulholland is much more than an inspiration.

Renay is a motivator, a gutsy change-maker, and a proud mother, sister, daughter, aunty and niece with a story to tell.

Renay’s Country is the Birpi/Daingatti nations on the mid north coast of NSW, and her learning and life history has been shaped by those who have gone before her, those who have surrounded her with love and wisdom, and those she is now advocating for and sharing her knowledge with.

Renay grew up in a single-parent household with financial hardships. She attributes her inner strength to her close-knit connections with her mother and extended family.

“On the practical side of things, it was difficult. I don't think we owned a car throughout my entire childhood. So, it was public transport or nothing.

“It really helped me develop resilience. It was like me and my mum and my brothers against the world. And, you know, we could defeat anything with just the four of us. I was lucky in that I had my extended family around me too, my best friend lived next door, and my cousins lived up the street, so I had a network of love and support.”

Now, as Renay navigates life with PTSD, anxiety, polycystic ovary syndrome (PCOS) and ankylosing spondylitis – and as a mother who is raising children with disability – she is channeling the wisdom of her past, gathering her skills and proudly advocating for the rights of those living with a range of abilities, especially in Indigenous communities.

She also speaks out – loudly and proudly – for the recognition and rights of people facing barriers to equality in their communities to break down the stigma and create understanding of psychosocial illnesses. This includes her feature on our Grow Bold with Disablity podcast.

Find out more about Renay below.

Disability pride and a ‘wonderful kaleidoscope of people

Renay’s own journey of embracing disability pride snuck up on her. She didn’t realise, until a while after she became physically disabled due to her diseases, that disability was part of her identity.

“I had caught a case of the Epstein-Barr virus that landed me in hospital when I was about 22, and not long after that I became mum to a disabled child.

“So as my child grew and I found myself needing to be more active, I became less and less able to ignore the excruciating pain, loss of mobility and swelling that often left me bed-bound.”

During her time confined to bed, Renay browsed the internet and was motivated by the words and work of “a fierce disability advocate”, Stella Young.

“Reading some of what Stella had to say was like opening a whole new world, one where I was not failing as a person because my body didn't perform a certain way. And the community was open and welcoming”.

“Understanding and identifying as a proud Black, disabled woman helps me to connect with others who relate to my experience. Solidarity and support can make enormous changes to people's lives.”

Disability pride, Renay says, means recognising the wonderful kaleidoscope of people and experiences that make up the human race. 

"It means truly seeing the value in yourself and others, and sharing that with people to help them see their own value and worth.

“Disability pride means rejecting the idea that bodies need to move, look, or do certain things to be worthy of praise or just exist as a member of our community.

“Sharing my pride means that people can recognise that one-size-fits-all is not possible, and we need to see that true diversity in our society reflected and celebrated.”

Provisions, protection and prevention

Renay says she doesn’t speak for everyone and the topic of the Stolen Generations “is incredibly painful and something that impacts people immensely”. These impacts cannot be understated and touch everyone in Indigenous communities.

What she does know is that policies and health services we as a country provide for First Nations people need to first and foremost be community driven, and culturally appropriate.

Renay’s family was impacted by these racist policies of the past, and she believes it would make families reluctant to draw attention to any physical or mental differences in their homes for fear of giving authorities any “reason” to take a child.

“In general, BlPOC – Black, Indigenous, people of colour – are held to a different, and often higher standard. As a protective measure, we become less open about things that might see us scrutinised.

“Any provision made for someone – like, helping the wheelchair user get over stairs or a certain kind of tool to help heal them – was seen as an individual's need, rather than a deviation from 'the standard', and a disability. And so we didn't talk about it as it's just part of life.”

Renay says First Nations people have had a “continued, thriving connection with this continent since time began, however we continue to have some of the worst health outcomes and experiences in the world. “We shouldn't be dying of treatable, preventable diseases and poor health.”

Culturally safe and appropriate health care services will improve lives and reduce the barriers that disabled people in Indigenous communities’ face, Renay says. “Redirecting our focus to reducing those barriers will help improve both the health outcomes and contribute to our seeing a true embracing of the diversity human race.”

Mother to mother

As a child, Renay watched her own mother volunteer at the local community centre and work as an advocate for tenants’ rights in the community housing field. Her mother displayed devoted and dedicated leadership, organising support groups and setting up committees with domestic violence survivors.

Cas, Renay’s mum looks lovingly across at a young child wearing a striped tshirt. There is a milkshake sitting on the cafe table between them.

“I could see other people being impacted by her advocacy and her spirit. So, I think it kind of rubbed off on me.”

Her aunties were also a source of great inspiration. “My aunties are some of the most amazing women in the world, both on my mum's side of the family and my dad's side. Having the love of these women and seeing them in leadership roles out in the community and around the home modelled so many different kinds of people, all of them I wanted to grow up to be.”

Renay’s aunties helped define her vision for herself, and her belief in her abilities. “I have a great memory of my dad's sister coming to visit me when I was not even three. And she's a very tall woman. I remember her being this great giant who bundled me up and told me how wonderful I was and that I could do anything.

“You know, all those cliche things that people maybe don't say a lot because they sound so contrived. But I remember hearing it at that age and thinking, ‘Yeah, maybe I am.’

As a result, Renay said she has never felt the inclination to be like everybody else. She was just 15 when she recognised that for her own mental health, she wasn’t going to try and meet the expectations or intentions of others.

“I'm always going to be Aboriginal. I'm always going to be tall. Now I'm always going to be disabled. Nothing is going to change that. So, I must work on getting to a point where I'm happy with who I am."

The diagnosis journey 

As a young woman, studying fashion and raising a baby with a disability, Renay began noticing symptoms of exhaustion and pain.

“I remember not being able to stand up for longer than a few minutes, thinking, there's got to be something more to this because I'm trying so hard, and things are just not happening.

Renay saw “every single doctor that would see me” to have her symptoms checked, analysed or monitored and was routinely told that she needed to lose weight, that she would be “fine”, that she should try eating better or getting more sleep.

“I was doing those things and it just didn't make a difference. Finally, I ended up seeing a doctor that I wouldn't normally see at the same clinic I had been going to. He was a very soft-spoken man who didn't say much. But he said, ‘stand up’. And he got me to do a couple of stretches and sent me off for a blood test.”

It was ankylosing spondylitis (AS) – a form of inflammatory arthritis that can affect a person’s spine and hips. 

“In between the discs in my back, there's little spurs growing, and they cause a lot of pain and cause a lack of mobility as well. I have trouble moving around, or if I do, it's painful.”

Eventually, Renay overcame a mental hurdle about being a wheelchair user, and she has now used one for about five years – she’s enjoying the benefits and is considering taking up soccer.

“I like to call it the world's best wheelchair because it's amazing. It can go on the beach. It can go on snow. I love getting out on Country with the kids and climbing mountains with it.”

An advocate for the social model of disability, Renay’s work is based on the foundation that people are disabled by barriers in society, such as a lack of wheelchair ramps or facilities. 

She’s also spending time focusing on her own care which allows her to be so active – physically, mentally and in her work and community. Renay now manages her chronic pain with a combination of medication, water therapy, exercises, physiotherapy, and massage.

Forward thinking and backing herself

“I would like the future to be accessible! I would love to see everyone – disabled or not – embracing the support and implementation of truly accessible communities,” Renay says.

“I would love to go out into the world knowing my access needs have been considered and not having everything be a battle.”

Within the disability sector, Renay says she has admired people such as Mali Hermans, who she works with as part of the Disability Justice Network.

“She inspires me. She's a Blackfella. She is staunch and compassionate, and so community-focussed. Even though she's younger than me, she's the kind of person I want to grow up to be.”

She’s also inspired “endlessly” by writer, speaker, and appearance activist Carly Findlay.

“She is an incredible example of how you can celebrate fashion and disability, and it doesn't have to be one or the other. She endlessly teaches me how to back myself. And that is a skill that I'm very grateful for.”

Renay is currently working on some new writing ideas, and she will be performing at the Emerging Writers Festival in late June. Find out more about that here.

You can also find Renay on our Growing Bold With Disability podcast by clicking here.