Part 3 – The hardest and best things about SDA, the day-to-day reality and having hope – Audio transcript

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The hardest and best things about SDA, the day-to-day reality and having hope

Part 3 – Audio transcript

 
 

SAM:

Hi. I’m Sam

KAREN:

And I’m Karen

So, we’re going to be talking about moving to SDA, the day to day reality of living in SDA. Sam will take us through to talk a little bit about her apartment and we’re going to talk about hope and how life has changed since moving into SDA

I haven’t made the move yet to SDA, so in Part 3, we’ll also hear from Liz again, who has a disability, about her experiences of daily life in SDA.

So Sam, what is the hardest and the best things about living in SDA?

SAM:

The quiet is the best thing.

The cessation of the noise was quite eerie and sad because of those I had to leave behind. People would scream. I now have my own things around me, food in the fridge, temperature how I want it. The peace of my own space. Worst thing, still not being given as much choice and control as I should. Being unsure of the reliability of your support workers like if they get sick or something but that can happen anywhere.

KAREN:

We all have our preconceptions on what we think that SDA is going to be like before we move so it’s really good to hear Sam’s perspective on the good and the bad. I think that having the ability to make your place a home is really important and I think that that’s why it’s really important to choose a space that’s going to be right for you I think, rather than looking at it as just an escape from a nursing home or a place that’s got support. So being home is a really important point.

So, Sam, do you mind sharing a little bit about your apartment and how it works for you? Firstly, perhaps you could tell us how many bedrooms the apartment has.

SAM:

I have one big bedroom, big enough to fit my hoist, my bed, and park my wheelchair as well. And all my clothes. I also have a study/studio too. The kitchen and living area is nice and open.

I was a bit disappointed I couldn’t paint the walls but I managed to make it very colourful with all my things. I love colour.

KAREN:

How many bathrooms does the apartment have, Sam?

SAM:

One big enough to fit my commode. I also have a spare toilet for able-bodied people which comes in handy for support workers. I also have a small balcony where I have fitted as many plants as I can.

KAREN:

I worry about not having enough room for all my stuff, so I’m wondering Sam, what’s the storage like in your apartment?

SAM:

Never enough. I’m an artist and because I like to buy in bulk, I store chips in my dishwasher.

KAREN:

At least now we know where the secret chip stash is, Sam. Yeah I don’t use my dishwasher for anything either.

So, Sam, what are some of the features that you love about your apartment?

SAM:

I have a lovely view onto quiet streets and a park. I can even see it from my bed. The Yarra runs through it but I can’t see the water from my place. And the sunrise, the rainbows, hot air balloons, clouds, the moon, the stars and bats.

KAREN:

That sounds so lovely – can I move in?

I think one of the things about when you live in aged care that people don’t really realise is that there’s high fences, you're surrounded by high fences to keep people in. So you moving to an apartment where you've actually got a view of things and you can see the sky must be so amazing, I’m so jealous.

SAM:

Yeah, yeah, huge change.

KAREN:

Sam, can you tell us a little bit about the location of your apartment?

SAM:

I’m close to the shops, doctors, cinema and Dizo, hehe. It’s very close to the arts of Naarm/Melbourne. I’m on the east side of the city which makes it easy to visit family. But basically it is a nice view and it’s quiet.

I was kind of lucky that the choice became very clear to me. Where I was living before was really not liveable and this new location was so ideal.

KAREN:

Sounds like the apartment and the location really work for you, Sam, so that’s good to hear. It sounds like you got like a celebrity view.

SAM:

I bloody deserve it after all that.

KAREN:

You sure do.

Must be fabulous too to be able to go to the movies, go shopping and do what you want when you want and not have to sign in and sign out.

SAM:

Yep. And waiting at the door for ages.

KAREN:

Yeah.  I once got dumped out the front of aged care after going to physio and I couldn’t get back in.  I don’t know why I just didn’t make a run for it.

SAM:

Because you need the support.

KAREN:

Yeah, that’s a good point, isn’t it, that we don’t have the same freedom as everyone else to leave a situation necessarily.

SAM: 

Yep.

KAREN: 

Just imagine that, being 45 years old and waiting to get back into the nursing home because that’s all that’s there for you or that’s all that there is available for you.

It’s like you keep on knocking but you can’t come in, you're much too young, you should be out there having fun.

SAM: 

Yep.

KAREN: 

I think it goes to the point of understanding the location, what you might be able to do once you move to the SDA. I’m trying to get a sense of that so one of the things that I’ve discovered is that my location is actually really close to a fully accessible beach with a changing places facility which makes it really good for me because I love the beach and the water. But I wanted to be close to the city.

SAM: 

I do too.

KAREN: 

And I’ve also discovered that there’s a few music venues that Tex Perkins has been playing at close by so that’s a positive for me because I love it, I listen to music very often. I do like my Tex Perkins, especially when he does Men In Black. So there's things that I don’t like about the location that I’m going to, but there are things that I’m looking for the positive at the location so that I have that way to look forward to things.

SAM: 

Grab it.

KAREN: 

Yeah. 

It's just an exhausting roller-coaster I think of emotions and resetting your expectations and trying to create a life that you don’t really know how you’re going to live, I think, because I’m uprooting my entire life from another location to move closer to the city. So it’s trying to find things where I can fit within a community and find that connection to community is really important to me, and I’m not quite sure how I can fit at the new location but it might just be going down to the beach and having a coffee and just people-watching.

So, Sam, following on from the best and the worst of SDA what is the day-to-day reality like for you?

SAM: 

The day-to-day reality is hard and always will be hard. I see it as you have the same problems with the world as you did before, only you have a better space to call home. 

KAREN: 

That’s so true, that goes towards what we’ve discussed around moving to SDA doesn’t necessarily mean that life’s going to be suddenly all glorious and easy because we’re still living with the same day-to-day reality of life with a disability so that’s a really good point to make, Sam. 

SAM: 

Ableism too. 

KAREN: 

Yep, living with ableism and a disability. Too right.

SAM: 

Here’s Liz, who shares her experiences of ableism and the day to day reality of living in SDA.

LIZ: 

For a year we were excited about this apartment and had every right to be excited and it was, not in a bad way but all this thing about, when you get into your apartment you’ll be fine things will settle down. What I realised this thing, my issue with my disability, regardless of where I was living, was going to follow me for evermore.

At the start I had people that weren’t trained in what they were doing and I used to be able to tell people what to do and it was done and that wasn’t working, really wasn’t working and my goal let’s just get out bed and do the daily tasks and live as opposed to what I like to call independence. And my dependence consumed me rather than being a part, a part of me, that stops you eventually, in many ways from functioning and participating in normal everyday life, as I like to do, because everything else just takes over and you end up on autopilot because you can’t do anything else just sort of fight the battles till you can re-engage with it and fix it. But people, including the disability support work sector, need to be more supportive of that, rather than putting more issues onto you to fix that. Because that’s not actually going to help you fix it, it’s going to make you more anxious and unable to contribute to fixing it.

SAM:

Yes. No one is truly independent.

LIZ:

Obviously, every tenant is going to require a different thing and some might be at different stages and might be more able to do certain things for themselves or know how to do the daily stuff or whatever. But you need to be a bit more broad minded in what your job is and just be a little bit understanding of the toll everybody’s opinion, because it happened in accommodation and it’s happened here, everybody’s opinion on your life. It’s Liz’s opinion, nobody else's. I have a friend, this worked for him, he told me something very wise he said, good healthy debate, blah blah, but in the end it is my decision and that’s what it is. I’m happy to talk to people that are happy to have a two way conversation but in the end my choice, not yours.

I love my apartment, I love it but it’s only now that my roster is running smoothly. I like it even better that the onsite support is now functioning the way that I want it to in that they are very much in the background and they are only up there when nobody else is. 

I’ve got a team of people around me that I believe know me enough that if I can’t be, like I ended up saying to them I can’t be upbeat Liz all the time, I can’t do that all the time, you’re going to just have to take it as it comes and go with it. And now I know that they can and I don’t have to. It’s never going to go away but I don’t have to stress as much about what they’re doing or how they think of me or you know, some of that perception about yourself or finding the right people to work with you. And if they don’t get you - I had someone say to me recently you don’t really have to like them to work with them and I said actually that’s a lot to do with support work. You have to like them to be able to work with them otherwise - it doesn’t function if someone doesn’t understand where you’re coming from in your life.

It’s a lot about choice and it’s a hard one because you are always, I use the phrase that I’m always working. I have my paid job and I have the things that I love to do, but I’m always working because with some staff, you guys would know, there’s some things you do talk about and there’s some things you don’t, and sometimes you can’t just say whatever is in your head because it’s not going to come out right. I may not be in my paid job but I always feel like I’m working. So you have to get the dancing partners right to make it a little less like work if that makes sense. 

SAM:

Yep. Microaggressions, and there can be so much and day in day out they really get to you 

LIZ:

Oh, the constant little every day nonsense that you always have...I’m familiar with the concept

SAM:

Yep. They are so bad for you.

LIZ:

They really are.

I think that this breaks the stereotype and the myth that people with disabilities aren’t entitled to the same wants and desires of everybody else and I don’t know how that’s ever been able to come into play but it certainly still exists today. We fixed so many other rights and wrongs in this world that we need to demystify that one and we’ve broken the glass ceiling, so hopefully there’s more to come.

KAREN:

Some really interesting insights from Liz about her day to day reality of living in SDA, and the challenges she faces with organising staff as part of her everyday life. Thanks Liz. 

So we’ve talked about a lot about the difficulties around not only moving to SDA but also around the difficulties of having a disability and dealing with the mental health aspects around that, dealing with the negative attitudes around you sometimes by people who are meant to support you. And I keep saying that I want my Pollyanna moment or that moment of hope and something that gives it all a bit of happiness to end the podcast with. I know, Sam, that you’ve prepared something that you'd like to share around hope if you’d like to tell us what your experience is around hope. 

SAM: 

I wish I had more hope to give. It’s still hard. Things are improving for me. I’m slowly building up a good group of support workers. Moving into SDA has enabled me to do this by giving me my own space and time to do so. But there are still times when none of them are available and I had to work with unsuitable support workers. Unfortunately, the current SIL company, the one that provides all the in-home supports are not reliable, so all us tenants as a group have decided to look for another company. I’m not holding my breath, but the others are confident we can get a better one. It will mean I won’t have to worry about having my own support workers so much and maybe more choice and control. 

KAREN: 

That’s a really good point you make there, Sam, too and I do take hope from that because I think that I understand probably a lot of people’s fears are how do you get good supports in place when you do move to SDA? I understand also that it can be a really difficult process but slowly but surely once those supports are in place and you do have a good team around you, you can start to focus on things that make life more enjoyable and get the most from life, I think. So that’s the hope I’m going to take from this. 

Also I think that learning from others is a really good way to understand what your rights are like we talk a lot about rights but we don’t necessarily have the energy or feel that we have the power to invoke our rights and I think that the more we hear about people who have taken that path and had successful outcomes I think that we draw strength from that as well. 

SAM: 

I feel it’s not just about rights, it’s about the human relations too and that’s another nut. 

KAREN: 

Yeah, there’s a lot, isn’t there? It’s one thing to have rights, it’s another to find the people that are a good fit and have the right attitude too. 

SAM: 

Yeah.

KAREN: 

Perhaps people feel not so alone in the whole SDA experience and that there’s that reality, the actual reality of what this whole process means to a person living with a disability, because we get all this glossy marketing materials showing us that SDA is going to be just life-changing and amazing and you live an independent life.  But if you're in aged care and you've gone through that process where you've lost a lot of your skills and you don’t feel like you've got the capability to live this independent life outside of aged care, then you're not going to relate to those glossy marketing videos.  

So I hope that what people take from this podcast series is that they're not alone in their experience, that there are people out there that have gone through a really rough time with their SDA journey, but I think that we can all take hope from this that things are better than what they are in aged care.  And the final word goes to Sam.

SAM: 

SDA has got its own problems. But for me this is better. If you choose it, you deserve a home. And the more we use them the demand will be higher and probably the more sustainable these arrangements will become.


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