Part 2 – Fears about moving and challenging others’ perspectives – Audio transcript

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Fears about moving and challenging others’ perspectives

Part 2 – Audio transcript

 
 

SAM:

Hello everyone, welcome to Part 2 of our podcast series.

Hi, I’m Sam

KAREN:

And I’m Karen

SAM:

In this podcast we are talking about fears of moving out of aged care and group homes, and challenging other people’s perspectives.

We also hear from two other people with disability called Liz and Lisa, who have each spent time living in group homes or aged care. We’ve talked about our experiences in the past and they’ll share their perspectives too.

KAREN:

Thanks Sam. So moving to SDA won’t be the Cinderella story that you might anticipate because you’ve still got to deal with the realities of your life and what’s going on and you know, adapting to having support workers in your life too. I know I’ve grown up with a disability, but I was fiercely independent, and I didn’t like to ask for help and suddenly to go with people having to be by your side and having to help with your shower or going through your purse to get your money out, knowing what you spend on a day-to-day basis, because they’re there when you’re spending. It’s your life exposed to people you don’t necessarily know much about and sometimes you don’t want them to know about your life, but it’s pretty hard to hide what you’re doing from people that are there all the time.

SAM:

Yes, it’s so important to have the right people supporting you. You won’t get them right away or forever, but it’s pretty nice when you have them.

KAREN:

Sam. Are there times when your SIL provider doesn’t provide assistance that you had an expectation that perhaps would have been provided?

SAM:

Definitely.

KAREN:

I don’t think you get it right in your head what will be provided exactly. It’s like unexpected supports or unplanned supports but what’s an unplanned support?

SAM:

They can cover anything unexpected outside of your one-on-one support shifts, like if you drop something or you need to go to the toilet or tea or food heating. And when your one-on-one can’t make it, they can cover the shift, although that’s not ideal because they are supposed to be available to everybody during that time as well. My current shared support company hasn’t been good at communication with other support workers, so we keep getting new support workers and I don’t feel comfortable with them and not given any choice with them. They often don’t respect me and they put on shared support without me meeting them first.

KAREN:

So moving to SDA can be a really scary prospect and it can be a difficult process. I’m wondering, Sam, could you share any fears you may have had around moving to SDA?

SAM:

I was scared for many reasons. I was afraid of dropping my buzzer and being unable to yell for help. I still fear this but not nearly as much because my needs have been met so I don’t need to call as much and I have four ways to call them, on my iPad, a pendant I can wear around my neck, on the wall and I can message them on my phone.

Most of all I feared I wouldn’t feel any better mentally and no, I didn’t for a long time but I’m starting to and it feels pretty nice. It simply takes a long time to feel at home and even more so when you have a disability, I feel. We have to get used to our new support workers to feel at home.

KAREN:

Sam, do you think that any of your fears may have been as a result of people’s attitudes and perspectives with regard to you moving to SDA?

SAM:

In a way I was lucky, I had a disability before I had the stroke so it didn’t floor me as much as others so therefore other people’s opinions didn’t get to me as much but they did get to me. Someone at the nursing home used to help me with my dinner and they would say innocently to others “who is going to help her when she leaves?”. The nurses used to drive me up the wall telling me to be careful when I went out. At the group home they said “you won’t get this level of care anywhere else”. For a while I believed them which was scary. They were so wrong.

KAREN:

That’s really interesting that sometimes the people that are supposed to support you are the ones that actually cause the most damage and make you doubt whether or not you have the capacity to move to SDA and have the opportunity to live your best life there. I think some of the things that concern me around SDA are the fact that you feel like – I think it’s a different concept, isn’t it, to have 24-hour care on a – on-call basis but not actually perhaps knowing exactly what sort of supports that on-call basis will support. They talk about unplanned supports and things like that but we don’t necessarily know what those unplanned supports are and I think that something that’s just occurred to me is that when you’re in a nursing home you can press the buzzer and it doesn’t mean anything, it’s like 20, 30 minutes later, no-one’s going to come and I think it is something that you need to be able to trust, that those on-call supports are going to be there for you when you need them.

SAM:

Yeah. In my place they message you.

KAREN:

Also trying to understand what other supports you may need in order to live the best life that you can when you look for the SIL provider you get to interview quite a few different providers. I think that if you have one SIL provider but you need another agency to provide personal care and ongoing supports elsewhere that perhaps you look at a different agency perhaps so that you’re not with the one agency for all your supports. Separating out your supports might be a great idea. Do you agree with that, Sam?

SAM:

Definitely.

KAREN:

One of the other fears that I have is that I’ve made the wrong choice so it’s such a long time between when apartments become available until when you get to move to them. There’s compromises along the way and it’s like have I compromised on the right things? What is the most important thing? I think that there’s that period of the wait that all your anxieties can build and that element of doubt that perhaps I haven’t made the right choice and even though they say to you “look, you can move in 12 months’ time, it’s not forever” but then by the different token they’re like “oh well if you want that in the apartment it’s going to have to be a special thing to be done” and then you have that feeling that oh they’ve done that for me, maybe I shouldn’t really because that’s just an extra thing, that you’re either not grateful or that you’re wasting taxpayer funding by doing that extra element of accessibility, I guess, built into your apartment.

So you just feel like you really don’t have that level of freedom perhaps as an ordinary person might have, the fact that you can’t see the apartment before you have to commit to it, and I know like you can say “oh no, I don’t want to accept the offer now” when it’s close to the thing but I think it takes a bit of strength to say no when something doesn’t feel right when you’ve already committed to it.

I think it also depends on where your mindset is at any given time on how you actually respond to it. We spoke earlier about ableism and internalised ableism and sometimes when you're hearing negative comments about yourself you internalise that and you have the same thoughts about yourself. Because people are always constantly telling you things and it’s really hard to actually push back against those comments and know what you’re even capable of sometimes. Sometimes you just get angry and then it’s “oh people with disabilities are just always so angry”.

Sam, what do you do when people say negative things?

SAM:

I often haven’t said anything because they just wouldn’t get it anyway and like you say, they say you are getting angry at them which you are, but with good reason. I can relate with you so much.

KAREN:

Yeah.

SAM:

We’ll now hear from Liz and Lisa who share their experiences on fears about moving out of RAC, challenging others’ perspectives and the dream of SDA. I had a conversation with them in early 2019.

LIZ:

Hi I’m Liz. I’m in my 30’s. I love live music and I like going to sporting events.

LISA:

I’m Lisa. I’m 43 and I love rock n roll.

SAM:

Hi. I’m Sam and I’m a massive nerd.

LIZ:

I am now living in my own apartment in Fairfield. I have lived there for 7 months and I came from group housing in the outer eastern suburbs of Melbourne.

LISA:

I’m in a nursing home and I have been there for 6 years.

I have been in the nursing home for so long that’s all I know and that’s all I get. Sorry I’m getting a little emotional now.

LIZ:

It is such a distant dream because of well, look a lot of people tell you, ‘are you sure you can do that?’ I’m like well yeah, with the right supports yes I can. But then you need other mechanisms to come into place so you can do it. New builds, Summer Housing, the other developers.

Other people seem to, particularly in accommodation, they only see your physical dependency issue and they can’t see you and what you’re capable of and what I found is the longer you spend there the more incapable you feel.

It took me a little bit of being back at Mum’s to, or back at my folks I should say, to go hang on I can actually do this. It was like I’d stopped thinking I was capable of doing it because people had quite openly told you that couldn’t.

SAM:

I had had my rights explained a long time ago but I had them so continuously not fulfilled by everyone that I almost gave up. Attitudes are so hard to change.

LISA:

Can I just say that people look down upon us so you feel like that.

SAM:

Hugely even though you are your own person the people around you have a big impact and that is so often limiting.

LIZ:

I was told in the shower do you really believe you can do that and I said yes with the right supports. While she was showering me, I don’t know why, people can’t think outside the box. And I’m just like yes definitely with the right supports I mean everything has to be in its place but I definitely think I can, but how rude. They don’t think it’s at all possible and it does take a lot to make it possible but we’ve proven we’re living proof that it can happen.

SAM:

Yep.

LISA:

They always say to me and how can you do that. And I say I’m moving into my own unit and they say, but how. Like I can easily fucking explain it. It’s a nightmare where I am, and if I listen to other people … and listening to you today has proven I can do it, where I did not believe it.

SAM:

Doubt, doubt and you are trying desperately to hold onto what you feel like is unobtainable.

LIZ:

I think that people have got to remember that to them you are their job, but you have feelings and people forget that and they think they can just come in and say what they like and leave and it doesn’t matter but what it actually does it has very long lasting effects, effect on you and I’ve learnt recently the art of choosing and I’m trying to choose, very hard, how some days how you look at things. And I’ve learnt a lot about how your past experiences will influence how you look at your current ones, like that, but people have to understand that you bring that with you as well in all your experiences in life and what’ve you’ve had you know.

The NDIS has played a vital role in the moving into my apartment as I needed the Specialist Disability Accommodation (SDA) high physical support in my plan to be eligible to move into the apartment.

And it’s also given me the best support package I’ve had in my life to be able to live independently.

SAM:

Thank you Liz and Lisa.

KAREN:

Often the system that you’re in is not supportive or understanding of disability which is totally ironic isn’t it.

SAM:

Yeah

KAREN:

I remember having to go to breakfast club at rehab and there was some kind of – I don’t know whether it was meant to give you confidence to prove that you could do stuff for yourself so that you could eventually return home, but I just kept seeing it as this test that if you failed you ended up in the nursing home. Of course I failed the test in my own mind because the breakfast club at rehab wasn’t wheelchair-accessible. It was designed for people that could stand and do things how are you supposed to feel like you can cope and manage living as independently as possible when you’re going through that psychological thing that you’re not meeting some kind of target. That whole period for me was just so traumatic so that there are things that I’ve just totally blocked out and that I don’t hold onto the negative things that perhaps I may have heard throughout that journey because you wouldn’t be able to get out of bed every day, I don’t think, if you kept all those in your head.

SAM:

We don’t remember these things because they are so painful, and many are so small yet profound.

KAREN:

And it’s learning about the structures in society that continue to perpetuate the narrative around disability, you recognise how much of it – it doesn’t necessarily make it easier to deal with, it takes it away from me on a personal level, it takes it to a societal level and it’s that total awareness that it’s not my fault and that – society needs to do better. I think that way back when I was in the nursing home there were people who had acquired disabilities and it was that sort of bit of an epiphany that, hey, they’ve got disabilities and they don’t deserve to be in this nursing home any more than I do. So, clearly, it’s not me that’s the issue, it’s the way society is responding to this situation that is the issue and if it’s not right for them, then it’s not right for me, or not there for me as well.

SAM:

Totally. I learnt a lot too both in the nursing home and group home. But a lot of it came with so much pain. But they are still discriminating and that is taking away our lives. I believe it is very important to stay angry, but important to pick your battles. And yes, we must have ‘me-time’.

When we come back, in Part 3, we’ll talk about what it’s like living in SDA and having hope. Bye again for now peeps.


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