Marilyne

Marilyn: Especially when I go to the toilet.

Tammy: Yeah.

Marilyn: You know, gotta slow down and sit on that thing when I go toilet. No one there and I feel like falling down.

Tammy: Have you got anyone to help you?

Marilyn: Yeah this one here (gesturing to someone off camera). He help me a lot, and my sister. They do cooking for me.

Tammy: Yeah. So do you just wanna say your name into this camera here, just say “family help me with showering and cooking.” Just say that for us?

Marilyn: And this not too hard, this meant I wanna come down to sit here where family sit down?

Tammy: Yep.

Marilyn: Basically when we do cooking, bush tucker inaudible. Too high that one make it bit down like that one there (pointing in the distance). In front.

Tammy: So what do you need then, what is it that’s too high? What’s it called?

Marilyn: Cement, what they call that.

Family: Ramp. She needs ramp because people like nana here need to walk around, get around. Like she needs a ramp to hold on to to get to the shower, toilet, maybe outside.

Tammy: So a ramp for the-

Family: In the front.

Tammy: Just tell us, so a ramp for the outside and railing on the inside.

Family: (nodding head) Inside railing.

Tammy: Can you say all that now?

Family: So we need ramp outside, both front and the back, and the railing for both the bathroom and the shower. I mean toilet, and the maybe in the lounge a little bit. So nana can get around.

Tammy: Mm. So you need improvements to your house.

Marilyn: Yes.

Tammy: To make it safer for you, so you get support, like infrastructure aye. But what about other things, in terms of shopping for food, um, going to dialysis and that. Have you got support, people to support and help you get there and that?

Marilyn: Yeah car comes every Tuesday and picks me up. Tuesday and then Thursday and then Saturday.

Tammy: Where do they pick you up and take you?

Marilyn: To the dialysis.

Tammy: Alright.

Marilyn: And I just want to walk a little bit to the church, you know every Sunday. Sometimes father brings me home.

Tammy: Mm. And you feel-

Marilyn: I’m trying to you know do something, exercise for myself. I’ve been going to Darwin for this one, nothing happening.

Tammy: Tell us what this one is.

Marilyn: My back. I’ve been going in and out, nothing happening. They give me tablets for my back, nothing happening. And sometimes when I sleep, I want to get up. Too hard, I scream for this boy to help me out. Finding it hard to get up on the bed.

Tammy: Have you got like, do you need something that you can pull up for, over your bed so you can get up yourself?

Marilyn: Ah yes.

Family: And maybe a commode chair for the shower and toilet.

Marilyn: I think I got one from…they gave me one, with shower.

Tammy: Yeah. Tell us-

Marilyn: Sometimes I find it hard when I go to the plane. I tried to lift my feet and nothing, too hard.

Tammy: Ahh. So when you go into Darwin, tell us all that on the thing, I want you to tell me that you find it hard to travel on the plane because the steps.

Marilyn: Yeah.

Tammy: Alright tell us all that now.

Marilyn: Finding it hard when I get on the plane, slowly I walk, walk…sometimes I just wait for a while, ya know. When I feel much better I get in.

Tammy: What’s hard about getting on the plane?

Marilyn: This one now (slapping leg).

Tammy: Yep. But what’s- is the steps on the plane or-

Marilyn: That was…

Tammy: Tell us that, the steps on the plane.

Marilyn: The steps on the plane.

Tammy: Stairs?

Marilyn: I just go like this (motioning stepping with legs) slowly, slowly. And then, I feel like falling down too. Next they tried to put me on the ferry, too hard too the ferry. You know that long things. Tried to get in slowly, you know, both side just to hold it, for safety, tried to get in. Stand up and wait for a while, while I’m ready you know. Just slowly walking inside, no it’s very hard for me. I don’t know what’s happening with me, I wanna know. It wasn’t like that before.

Tammy: When you travel, do people travel, family travel with you?

Marilyn: Yeah yeah, I got one of my nieces I think.

Family: Cassandra.

Marilyn: She comes with me when I go in for appointments, yeah. Sometimes she helps me…too hard.

Tammy: Do you think about things that you might want to do in life that you can’t do?

Marilyn: Well yeah.

Tammy: Tell us about some things you want to do in life? That you can’t do.

Marilyn: I want to do something at home, or somewhere else, ya know. To walk around and visit family. But nothing, I get stuck in the house and lie down. I want to go out, get out from the house. Now I can’t.

Tammy: When you wanna get out from the house, what sort of things do you wanna do?

Marilyn: Just sit around with the family, get along with the family. See how they’re going.

Family: Visit family.

Marilyn: Go and visit around family. But I can’t.

Tammy: Besides visiting family, do you think about doing anything else? Like hunting or going out bush?

Marilyn: Well I used to hunting, with this father, family and we used to go out on a boat. Used to go hunting and sometimes sit down the beach. No today I’m finding it hard. Don’t know what miracle I can have…

Tammy: So you know with this- have you heard of NDIS?

Marilyn: (shaking head).

Tammy: National Disability Insurance Scheme?

Marilyn: No.

Tammy: You might have seen ads on TV, or they’ve started to visit communities now. So are you familiar with them?

Marilyn: I don’t know.

Tammy: Purple t-shirt I think they were.

Marilyn: Purple t-shirt…I don’t know.

Tammy: Uhh…hang on I’ll show you something.

Sheree: Do you get the benefits now from Centrelink?

Marilyn: Mm (nodding head).

Sheree: They help?

Marilyn: Yeah they help.

Sheree: What do you use that one for?

Marilyn: I go do shopping, just for a while. Little walk you know, just near that shop (pointing in distance). Closer more better.

Sheree: Yeah.

Tammy: Well there’s this new government scheme called National Disability Insurance Scheme. And what that’s all about is helping people living with disability, lifelong disabilities. And just providing, ya know, services for helping them to make life better for themselves.

Marilyn: Oh yeah, yeah.

Tammy: Now what they do is they put people on a plan. Now in those big cities and that, and you might see ads on television, in the big cities and that there’s a lot of things going on for people and that ya know. What they’ve asked Ninti One – Sheree and I – to come and talk to communities in Northern Territory and talk to people living in communities about how life can be better for them. And that’s what we’re doing here with you know. We’re interviewing you. Because they wanna know- what they’ll do is they’ll put everyone that’s signed up with them on a plan. And what they do is your own personal plan, so your plan doesn’t have to be the same as someone else living here.

Marilyn: No.

Tammy: Yours can be whatever it is, ya know, that you need. Can be different.

Marilyn: Oh yeah.

Tammy: So if you think about a plan, think about the things that you would need support with. So you talked about going to Darwin for appointments, you’ve got support there, your niece goes with you aye?

Marilyn: (Nods head).

Tammy: Did the hospital and that pay her fare as a carer?

Marilyn: Yes, yes.

Tammy: Alright, so you don’t really need support with that because you’re already getting that aye.

Marilyn: Mm.

Tammy: Um you talked about your house. So you need a ramp. I’m looking at your house now and thinking how do you get up and down there, to get into your house with your walking frame.

Marilyn: Sometimes I go in the front, round this way.

Tammy: Yeah, so that’s something you need support with aye.

Marilyn: Mm yeah.

Tammy: But think about the things that you’ve got support with now, and things you need support for. Because that’s where this scheme could help you. So just-

Family: Physio, physio.

Tammy: Would you like to do physio, someone comes and does exercises and that with you?

Family: For back, like-

Tammy: Like massage or-

Marilyn: Massage yeah yeah.

Family: Yeah exercise.

Tammy: So there’s those, physio and massage-

Marilyn: I try.

Tammy: Exercise and massage, someone to do that with you.

Marilyn: Yes.

Tammy: What other things would you like to do.

Family: Visit family-

Tammy: She mentioned visit family-

Family: In Darwin, she’s got nephew, nieces there.

Marilyn: My brother yeah.

Tammy: Would you like to go to Darwin, and visit Family and that?

Marilyn: Yes (laughs).

Tammy: Yeah, for like a holiday.

Marilyn: Yeah.

Tammy: Yeah, yep. But do you stay with family or do you need to stay somewhere else in Darwin. Would you stay at a hostel where you get help, or would you stay with family?

Marilyn: Hostel ya know.

Family: With disability access.

Marilyn: Where it’s low, bit low you know.

Tammy: Yep, so you need the right accommodation in Darwin if you went for holiday.

Marilyn: Mm.

Tammy: You need support with it too because your family don’t have it aye?

Marilyn: No, they live far out.

Tammy: Alright, just tell me, tell us anything else that you would really like to do, ya know in your life, and you need help with.

Marilyn: In my life, just what I want, I need help-

Tammy: Just be with family.

Marilyn: Yeah.

Tammy: So you’d like to go on a holiday and you’d like a ramp for the house.

Marilyn: Yes.

Tammy: Bit more safe.

Marilyn: Mm.

Tammy: Can you look into that camera, just tell us “Say I would like support”-

Marilyn: I would like support for the ramp, for me to walk around and to be safe with it. Sometimes I find it hard to walk ya know. And yeah I need a ramp.

Tammy: And railing.

Marilyn: And railing. They promised me housing, but nothing happening.

Tammy: And one last thing that you said that you’d like to do is go on a holiday to Darwin to visit your family, tell us in all those words. Say “I would like to go to Darwin on a holiday to visit my family, but I need support with accommodation.”

Marilyn: I need to go on holiday, and I need support from you mob now.

Tammy: Say “I need support with accommodation when I go on holiday to Darwin.”

Marilyn: I need support when I go into Darwin, because I want to stay and visit my family, my brother’s children. Just to see them for a couple of week. Because I haven’t been seeing them, they’re all grown up now.

Tammy: So what support do you need to go to Darwin?

Marilyn: Just for you know, accommodation. Accommodation and ya know, I need help when I’m there. Somebody should help me out.

Tammy: Transport?

Marilyn: Yes, for transport. To go out and visit my brother’s children. To you know, get around with them and talk to them. Cause I haven’t been seeing them for a while now, couple of months now.

Tammy: Now the other thing, when you’re back in Wurrumiyanga, you talked early about- you’d like to do a bit of exercise and you would like massage therapy aye, because you’ve got a sore back.

Marilyn: Yes.

Tammy: Tell us, into the camera, “That when I’m at home in Wurrumiyanga.”

Marilyn: When I’m home at Wurrumiyanga, I need support for my exercise for my back. And do some exercise, here on the island, west side Physio, all that I want, because I haven’t been doing that. Just staying home all the time, not doing exercise for my back. I used to work with the kids too, strong women.

Tammy: You miss working with the kids?

Marilyn: Oh I miss them. Cause I’m crook now.

Tammy: Mm.

Sheree: Cause you’re what?

Marilyn: I used to do Strong Women Strong Babies.

Sheree: Why don’t you do it now?

Marilyn: Cause I’ve got a sore back and I’m on dialysis. I don’t know when I’ll get better, try to do something. It’s really bad ya know, my back no good. Don’t know what I’m gonna do. What next?

Tammy: Do you know how you got a sore back?

Marilyn: Why?

Tammy: How did- you don’t know how you got a sore back?

Marilyn: Just lately, I don’t know. Dialysis I think.

Sheree: If you could manage that back pain you could do work with the children still.

Marilyn: What?

Sheree: If you could manage that back pain, can you still work with the children?

Marilyn: No, too very hard.

Sheree: Mm. If you could, um, get help with the back, then you could work with children or not?

Marilyn: (Shakes head).

Tammy: If you could make your back better, would you still work with the children?

Marilyn: Well I’d try.

Tammy: So just tell us in the camera, “If my back wasn’t still no good, I would still like to work with the church and the Strong Women’s program.”

Marilyn: Well yes, I’ll try my best if I get better. I’ll work with the kids and the church, because I haven’t been doing that. All I do is lie down, sit around at home, doing nothing because of my back. Finding it hard. Sometimes you know I put my foot on the wall, they reckon it can help.

Family: To lift it up.

Marilyn: Yeah.

Sheree: It helps?

Marilyn: Yeah, because pain here (rubbing thigh). I don’t know what else can I do.

Sheree: Mm. You take medication for that?

Marilyn: I do.

Sheree: Doesn’t help?

Marilyn: It’s on my thing. Doesn’t help. What else can I do.

Sheree: All good?

Tammy: That was really good, thank you for that. Is there anything else you’d like to tell us, or say?

Marilyn: Well I want to get a car to move around, you know go somewhere else, like down the beach. Where I used to run around where I was a kid.

Sheree: Mm.

Tammy: So you wanna do activities, like picnics at the beach and-

Marilyn: Yeah, yeah, that’s right!

Tammy: Tell us that.

Marilyn: I want to do something down the beach, to do activities, just to help myself, because I’m finding it hard to lie down, lie down. It’s no good for me. I’m finding it hard, sometimes I cry. You know, cry for my parents, my mother and my dad, to help me out. I don’t know what else I can do. Some people say, old people say you can lie down on a fire. I can’t. I can’t lie down, I can’t get up. That’s way too hard for me, to get up slowly, slowly. Can’t. The other day, last week I think, this one here and my sister tried to lift me up. Nothing. Was just like cement. Wouldn’t get up.

Family: Too heavy.

Tammy: And pain.

Marilyn: Yeah. But I told them, I’ll try my best I said. Then they left me, and I did help myself.

Tammy: That was really hard aye.

Marilyn: Mm. All I need is something to get up on the bed ya know.

Tammy: Like them railings that come over and have that strap aye.

Marilyn: Yeah yeah.

Tammy: Yeah that triangle and you can pull yourself.

Marilyn: Yeah.