'The scandal of asking for help': How support changed the game

Short Statured on C Street is a brief podcast about flatting with a disability by Umi Asaka and Jacq Ruth. Below is a transcript of part three 'The scandal of asking for help': How support changed the game.

Jacq: Kia ora, and welcome to Short Statured on C Street with Umi and Jacq.

Olivia: Kia ora. I am Olivia. I'm the editor at The D*List, and in this series we're looking at flatting with a disability. And in this part I'm gonna ask Umi and Jacq about who supports your flat? Who comes with a who supports you with things around the house and navigating that whole thing. So where should we start? Shall we start, tell me about some of the people who come to your flat?

Umi: Sure, I'm also wondering if it might be a good idea to share what we knew about support workers a little bit. So actually, we have different friends and not so much family, but people popping by now and then. And it's funny because a lot of the flatmates we had over the years have been people who started coming around for dinners once a week or something, and started coming more often and moved in eventually we had two people like that. It's quite a social flat, I think. And we also have different animals coming and going. Yeah, that's mostly due to you. 

Jacq: Yeah, I volunteer as a foster for Dog Rescue Dunedin so we ended up having eight dogs over two years, and then we've had some more since. But that was a very hectic time. So

Olivia: Wow and that’s not all eight dogs at once, right?

Jacq: No, no, that was spread out thankfully over two years. We've never had two dogs at once, because that would be absolutely bonkers. But yeah, that was pretty cool.

Umi: For me, I’ve always had support workers growing up for my mum. So I knew having support- how important it is to have support workers in day to day lives, and how much better you can live with support workers. But because I'm a migrant I wasn't eligible to receive funding for support workers for the longest time until I became a permanent resident, and recently I became a permanent resident. So I have been able to apply for the funding, which has been amazing.

Umi: But for you, you didn't know what support workers were? 

Jacq: Well, I didn't know it was a thing cause I grew up in an able bodied family, and the biggest thing they strived for me to be was independent. Which means not doing the scandalous thing of asking for help. And then I started living here, and we had a flatmate with a support worker who came round once a week and I was like, Oh, this is nice! Oh, this is cool! And then that started the process of actually, I think I would like one. I can actually regularly do laundry now. Oh, so good. Changing my bed sheets. Fantastic.

Olivia: Oh, my gosh, that's the worst chore. I have a support worker do that for me as well.

Umi: Yeah, when we are small, it's hard to reach every corner.

Jacq: So yeah, and then that process of getting a support worker is very confusing. 

Olivia: Yeah, well, how did you find the ones you have? ‘Cause I know getting support workers and finding good ones, reliable long-term ones is very rare unfortunately.

Umi: I think I was lucky that my experiences of having support workers growing up, my mum always got her own support workers through her personal network. So it kind of taught me how to approach people in some ways, and find the people who I already know. And so I first off, I reached out to my Japanese community, which also is very lucky, because I think people from like you. I can find people I can trust easier through that. But I also met these wonderful friends through other mutual friends, who I thought would be a great support, and their friends too. And then I asked for Jacq, I was like, would you be interested in being a support worker for my flatmate? Or for me as well? So that’s been working out.

Jacq: It's been awesome. That's been so nice. It's been a mission getting used to it, like actually letting them do things. And this sense where it's not really a mental load, but adjusting to the mental load instead of just doing the thing, explaining what you want done. 

Olivia: You're trained to like, be independent or conditioned to think that way. So tell me about some of the things that - you mentioned making the bed and laundry - what do the support workers help you with?

Jacq: The big one is cooking, actually. They come round, and they help cook. We have probably a bit more of an unconventional relationship with our support workers, because I'd consider them friends outside of supporting us. So they stay for dinner, which is always really nice and they've come round for a movie night separately. And they went out to a show with us, that's quite cool. And so yeah, that's actually really nice. And I'm teaching one of my support workers how to drive. That's quite fun. They're doing very well.

Umi: Yeah, for me, I think, having support workers, the biggest thing is our own safety. So like I said, I can't carry heavy things, or I’ll break my bones easily. So having them around to ensure that when I'm transitioning place to place, and I am safe, and that they can ensure that. Having them around to support really improves the quality of life. And another thing, one good thing about living in Dunedin is that there are lots of students and they are good people who can be good people to be support workers, although when they graduate they leave. So I think that's the hard thing about long term support workers. But I think, finding people at uni is one good way of finding support workers. 

Olivia: What would your advice be to other disabled people who had thought of getting support workers before? Or where they can find them, or navigate that kind of relationship with support workers? You both seem like you've done it quite well.

Umi: I think, for my example, it might not be as helpful because you may not know people to even approach as a support worker. But if you do have people you trust and feel like you can ask, you could go down that pathway, or I've heard other people using Student Job Search, and Trade Me and things like that, but you have to make sure to meet with them and like interview them, and see if you match the vibe, feel comfortable and trustable. We both have individualised, and the best thing about that is, we can choose who we want to have as a support worker, as opposed to other organisations sending people to you, and I think the are good part of people sending people to you is because you don't have to manage all of the employment aspect of things if you don't want to. But if you are able to do that, being able to choose your own people, I think can mean you have a better relationship with the people.

Jacq: It's a fight. It's a fight to go through the process of being assessed, of finding the right place to do your IF, to fighting, they may not give you what you need. So originally they gave me 90 minutes of funding a week for everything that I needed done, and I kind of went back to them, and I've now gotten four hours, which is great but 90 minutes to cook dinner, to go shopping with me, do laundry, everything else.

Olivia: Wow! That's nothing.

Jacq: It's worth the fight. It's a fight, and it's worth it. And if you do have the capacity to be able to manage your own IF and not go through a third party. It's a good way of doing it. It is tiring.

Olivia: Yeah, sounds like it's worth it. Worth it for you both, though frustrating that does take a fight. Well, on that note. Let's wrap up this episode. And yeah, thanks for sharing your tips and tricks around support workers. I think that's gonna be really helpful to people who listen to this and cool thanks for your time.

*Editor’s note: This podcast series was originally recorded in December 2023. A huge shoutout to Umi and Jacq for coming up with the concept for this podcast and their patience with us!