SEASON 2 EPISODE 6

Back to Country: Paulette Bumarda on Securing Support and Returning to Family

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Paulette 2022, Waterfront in Darwin (1) (1).jpg

Paulette Bumarda on the waterfront in Darwin.

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Originally from the remote community of Gunbalanya, approximately 300 km from Darwin, Paulette Bumarda now lives in an assisted living residence to receive essential support for her complex care needs. Paulette lives with a rare degenerative condition known as Machado-Joseph Disease. While support is vital, it is equally important to her to return to Gunbalanya to stay connected with family and Country.

Paulette Bumarda grew up in her home Country of Gunbalanya with her extended family of sisters, brothers and children. Family and Country is central to Pauline's identity.

My dad's from Gunbalanya, my mum's from Gunbalanya, my sister, my cousin. All my family's from Gunbalanya.
Paulette Bumarda

Paulette was diagnosed with Machado- Joseph Disease, a rare degenerative condition that requires care assistance for daily tasks. Due to Paulette’s declining mobility and increasing needs in support and care, she made the decision to leave her hometown of Gunbalanya .

It was a difficult decision to make, but was made in conversation with family and with the understanding that the support available in Darwin was necessary.

Now, Paulette lives in Specialist Disability Accommodation in Darwin, where she has a team of support workers who assist Paulette in her day-to-day activities, like bathing, as well as cooking.

While Paulette discusses the advantages of having support, she always looks forward to returning to her home in Gunbalanya where many of her family members still live. Paulette visits regularly, and with members of her family now passed, she deeply values the time she can spend with her children and family on Country.

In the future I'm going back to Gunbalanya to visit my son and my daughter... .. I will be back. I hope so.

The Speak My Language (Disability) program is an initiative funded by the Commonwealth Government under the Information, Linkages and Capacity Building (ILC) Framework. It is proudly led by ECCNSW and the primary national Partners are ECCV, ECCQ, MCCSA, MCNT, MCOT, ECCWA, and our national broadcasting Partners SBS. 

Podcast Tile Artwork:  Paul Constable Calcott

Transcript

Ngaire Pakai: Yaama, SBS acknowledges the traditional custodians of country throughout Australia and pays respects to elders past and present and ongoing in stewardship in knowledges since time immemorial. Welcome to Speak My Language: Disability. Listen as we share stories of First Nations people who are

engaging in their passions while living with a disability. Throughout this series you'll hear inspiring stories from leaders and advocates within the community who have successfully pursued their dreams in their chosen fields. A warning for listeners, sensitive topics of deceased Aboriginal and

Torres Strait Islander peoples are mentioned in this podcast. I'm Ngaire Pakai and in this episode I have a chat with Paulette Bumarda. She calls the Arnhem Land community of Gunbalanya her home, but recently relocated to Darwin to have better access to support. Paulette lives with a rare

degenerative condition known as Machado- Joseph disease. She shares with us her life in Darwin and her love for family.

Paulette Bumarda: My name is Paulette Bumarda, Hi. I'm really from Gunbalanya. My dad from Gunbalanya my mum from Gunbalanya my sister, my cousin. All my family's from Gunbalanya. So I'm really nervous on NITV! Well I was born 1970, 22nd, 4th April 1970, and I'm 54 and I'm still alive and I'm still good. But my

dad and my mum passed away in Oenpelli and my adopted father and mum, all of them passed away too. So I got myself and got my sister, Angelina. I got four boys and one girl. And the eldest one, his name is Rowan - the eldest one. Owen, the second one, who got three boys, then there's Mike and David.

They're all in Gunbalanya. And my sister Angelina Bumarda, she's married to Rodney, Rodney Ropina. They've got kids, they got maybe seven or six, six or seven. Four girls and three boys and she's my sister, Angelina Bumarda. My name is Paulette Lalara. My real is Paulette, I mean my real name is

Elaine Lalara but the dad from Oenpelli, he changed my name, so I'm calling my name Paulette Bumarda

Ngaire Pakai: Paulette shares some of the difficulties she has with movement and talks about the care and support she needs in her everyday.

Paulette Bumarda: I really hate this walking. I hate walking everywhere, I can't hardly walk. I only walk with the wheelchair, I'm on a wheelchair. My Arnhem Land community of Gunbalanya home because relocated to Darwin so I have better assistance, support, so I go here.

Ngaire Pakai: As Paulette's experience with Machado–Joseph disease continued, it was a conversation with her daughter that led to the decision to leave her home of Gunbalanya to Darwin for support.

Paulette Bumarda: I ask my daughter to send me here. Well, I really hate staying here but they told, but, but I want support. Anyways, she's right there all day. I got one support who do changes. She'll be here in the morning and in the afternoon till 3 o'. clock. She'll go on home and another girl will be here.

Ngaire Pakai: Gunbalanya is 300 kilometres away from Darwin. With the help of NDIS, Paulette's family and the MJD Foundation, Paulette was able to relocate. And the first step was getting on the plane.

Paulette Bumarda: I came by plane, by plane. And then, it's been pretty hard to say. I'm really from Gunbalanya, but I've got a charter to fly off. A charter from here, Darwin, to Gunbalanya to pick me up and put me where I'm here right now. I really like, I really like saying that because I got a lot of help from

hospital help. And yeah, it's called NDIS help. Well, they help, they help me with them, my girlfriends. She's my supporter.

Ngaire Pakai: Family is always on Paulette's mind. She thinks of her son in Gunbalanya and family who have passed on.

Paulette Bumarda: I don't know, because I got my son, my youngest son, he's got no kids. So I want to go back again to Gunbalayna to visit him. To visit David. He really misses me. And I miss him too. I cried a lot. My husband, he passed away a long time ago. But yeah.

Ngaire Pakai: In Darwin, Paulette lives in an SDA, a Specialist Disability Accommodation with support workers. She talks about the care and the cooking.

Paulette Bumarda: Yes. Yeah. Real friendly and nice. Yeah. Well, the carers have to come to help me in my bath. Or toileting. Toilet. Yep. Yes. Romee, I love. She always cook me food. They make, you know the one that is the deep and orange smoothie. I love it. Yeah, well, she made it once and I didn't know. When I

had drink. What? What's all this?! Oh, yummy! So what's that? Eating in white and blue cup and a straw.

Ngaire Pakai: Paulette is always thinking about returning to her community in Gunbalanya, and she looks forward to spending time with her son and daughter, where she is missed.

Paulette Bumarda: Don't know, in the future, I think I'm going back to Gunbalanya to visit my son and my daughter. Yep, I want to go home, but some lady up said no to me. So it's all right I've not seen them lot for how long, and then they can be back. I will be back. I hope so.

Ngaire Pakai: Reflecting together on the people in her life who have passed, as well as the family and support she still has today, a life full of love.

Paulette Bumarda: I'm from Gunbalanya, I'm really from Gunbalanya. My mum and dad, I told you twice, my mum and dad passed away. My brother passed away. And I've got my son, my daughter. He like my cat, my brother. I don't know where to go. I have to just lay it down, and go back to Gunbalanya. I'll go and visit my

sister Angelina. God bless her. I've got my friend Romee here. Romee, God bless her. I've got too many Bible in my home. I got nobody, but I got Romee here with me. And I love Romee too. I really love her, she's really kind to me and I really love her.

Ngaire Pakai: Speak My Language, Disability is an initiative funded by the Commonwealth Department of Social Services. It is led by the Ethnic Communities Council of New South Wales and proudly delivered in partnership with SBS.

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