Living An Independent Life When You Have A Disability🙌👩🦼🤩
"Peta, how do you cope without support workers?" Or better still, "why would you choose not to have the extra help?"
Every disabled person is different but here are Peta's techniques for an independent life while lifting with Cerebral Palsy.
The website: www.icantstandpodcast.com
Peta [00:00:02] Hello and welcome to The I Can't Stand Podcast, the podcast answering your questions on what life is like when you have a disability. This episode is so on brand. This week I talk about how I choose to live independently. What strategies I've put in place that enables me to cope for lack of a better word without any formal support workers. If you have a question you'd like me to answer, please get in contact with me. You can do it via my Instagram, via my email or via my website. All the links are in the description, OK? Without any further ado, let's get into it.
[00:01:01] This week, Amanda asked me Peta. How do you cope with no formal supports or support workers? It's such a good question, and it's something that I haven't been doing for that long. I guess. I moved out of home from my parents home in 2016, and I moved in to my very first home independently alone. And I love my house. There's no doubt about it. But when I first moved out, I had support workers every morning helping me get up and get on with my day. This was particularly handy when I was trying to get to work. I used to work over an hour away from my house and I used to have to be at my desk by 8:30 in the morning, which is no mean feat, particularly when you have a disability. But when COVID hit, I really wasn't comfortable about the idea of having someone come into my home who were also going to other people's homes, who also might have COVID. The likelihood of spread and it may getting sick was really high. And worst of all, I would hate for them to get rid of me. And for me to have given it to somebody else with a disability who has a compromised immune system. So I made the decision that I know many people don't have the option to make, but I made the decision to stop having support workers. I decided to see if I could cope by myself. And it turns out I can.
[00:03:00] Well, the truth is, I do have a bit of hope like my parents come every so often, mainly just to come and see me, but they do the odd bits and pieces. You know, I'm sure like your mom might fold a load of washing if she sees a clean load of washing that needs to be folded. And my dad will go out and trim the roses because he sees that the roses need to be trimmed. But really, I wouldn't call it ongoing support. I do everything for myself. I get up in the morning, a shower myself, I dress myself, I feed myself. I unload and load the dishwasher. I do my washing. I do my grocery shopping. I cook and clean. The NDIS is so important for my ability to be able to live independently. While I don't necessarily need the ongoing. High level support that other people with disabilities have with their NDIS plan, things like having a fortnightly cleaner, things like having a fortnightly Gotha. Things like having the delivery fee for both my fruit and veggies and my worse order being covered by the NDIS is really invaluable to me. There are many techniques that I've put in place that allow me to be as efficient as possible. I live alone, so there's not even an informal support for people to be able to come and help if I need the help. And yes, I have a lot of people that I could call if I really needed it. That's not a sustainable solution. When I decided to firstly live alone and then decided to cancel all support. I put in the strategies in place that allowed me to do it now, why I chose to do that. I'll talk about it in a minute because I know a lot of people don't understand why I would do this when you have the choice of a support. But let me tell you how I do it. It must be said before I get started. I have a house that's been adapted to me and my needs, and it makes it so much easier on a day to day basis just to do normal things like chop fruit and vegetables, like wash my hands in the sink like load and unload the dishwasher. All the things that maybe some people take for granted. I think that I'm able to do because of clever considerations and choices that I made along with a kitchen designer on how we made sure that I could live independently as possible.
[00:06:08] Also, I can't live without my electric wheelchair. That's just a fact. I would be stuck in bed all day without my electric wheelchair. Many of my friends have never seen me out of my wheelchair. That's how valuable this piece of equipment is to my life. Secondly, things like a hoist, I have a hoist system, the way system comes from Denmark of all places and it's a tracked waste that embedded into the ceiling. It can take me from my bed to my wheelchair to the toilet to the shower. And back again. Those things are fundamental to my independence, and I would not be able to live the way I live without them.
[00:07:05] But there are little techniques that I've learnt along the way that you might find helpful. I get up as soon as I wake up, because it takes me so long to get up and organised in the morning. I do not let myself lay in bed anymore. I then get myself in my hoist and I dangle myself mid-air in my hoist and put the towels on my wheelchair because getting out of the shower, you really, really don't want to make your wheelchair wet. Sitting in a wheelchair all day is not pleasant. So the towels are on my wheelchair. I've set out my outfit for the day already from the night before. I give myself a shower. I wash my hair. I get out of the shower. I dress myself. I have a massive, massive, long shoehorn. I think it's about a metre long and that really helps me take off pants. Whether it be pyjama pants or a pair of jeans at night time, I don't have the ability to sort of put my foot on my knee and pull my pants off. So I need to be able to do it from a seated position with both feet on the floor. I get custom bras made. Now, I'm pretty sure that there are adaptive bras out there now, but I have many sets of bras with a fix at the front and a fix at the back. The fix at the back is like the original fix that every brass have, and then the fix at the front is they've cut the bras in half between the two breast cups and able to secure my bra from the front. When I get dressed because I can't reach around to fix it from the back. I don't know how you ladies do that. You're amazing.
[00:09:11] The other thing I make sure all my clothes are super stretchy, particularly dresses, skirts and pants, so they're easy for me to put on. Also, something you might not know about me while I can't stand up independently, I can stand up with the aid of my hoist, so I put the sling on a different way and I can stand myself up independently and pull up, say, a pair of pants or whatever I'm wearing on that day. I do. You know, all the other normal things that we all do, brush our teeth, put skin care on, put makeup on. I then have breakfast, I normally ate the same thing every day because it just I don't have to think about it. And then I normally go into the laundry. I've already preset my washing machine the night before, so there's a fresh load of wet laundry that needs to be hung up. I have a heated cupboard in my laundry, which is great because it means I don't have to worry about whether it rains or not. I make myself a coffee, and then I come in here to my podcast studio and I start working for the day. If any of you live with a disability or know people who live with a disability, you know how difficult and how long that home warning process takes. And I might have explained that, like it sounds easy. It's not easy, but it's doable. Home delivery is so great for me, and I'm sure many other people with disabilities. Not only is it meant that I'm safe from COVID because I'm not going out into the community. But also, it's so much more efficient. I used to try to go to a physical shop. And to go to like a Woolworths or Coles, it would take me. At least two and a half hours just to do a shop. I also and I've heard on the grapevine. While I did not pay for mine through the NDIS, I've heard on the grapevine that this may be possible for people on the NDIS. I purchased a Thermomix during COVID. And while I was super hesitant to get one because they are so expensive, so, so expensive. Mine has been really helpful for me. Before COVID, I used to rely a lot on things like UberEats. I would get it multiple times a week. And between me discovering that I'm a coeliac and just realising that I felt awful after eating. Not awful food, but, you know, takeaway food isn't like a homemade meal. The same mix has been fantastic that enabled me to really prioritise my health. So I make all my own food. I tend to food prep a lot. I might cook two days out of the week and then the rest of the week are portioned frozen meals. That I've made previously.
[00:12:57] I have barbecue tongs sitting in my house throughout my house, and that's for when I pick things up and I can't get them off the floor or I have to reach like a vase out of the cupboard. Not technically a mobility aid, but super handy. I had a little bit of money left over on my old NDIS plan before it finished, and I got permission from the NDIS to go out and buy a robot vacuum. Well, I mentioned before, I have a fortnightly cleaner, I'm sure many of you sweep your floors more than once a fortnight and it really, really used to annoy me when people used to come over the house was so clean and neat. It's just the way I like it. And the floors were not because I can do a lot of things, but I am very, very bad with the broom, a vacuum and the mop. So the vacuum is just a great way to ensure that the level of dirt and when you have a wheelchair. There is a lot of dirt in my house. The level of dirt on the floor is manageable. If I ever dropped a bag of rice or flour or sugar or anything like that. It was such a drama. But now I can just direct my robot to go and clean it up for me.
[00:14:39] I have a friend on Instagram, her name is Nina. She has a miss, and her motto in life is, do you think Madonna would do any of these things for herself? No, and she's right. Madonna wouldn't. She would delegate. And for those who know me, and if you've followed me for a while, you would probably claim that I have a very, very strong inner Madonna within me. I can pull out my inner diva with the best of them.
[00:15:16] But the reason why I choose not to delegating this point in my life is I have had someone helping me from the very moment I was born. Think about it. I've never been alone. Never been able to complete anything. Of like daily tasks of any of that nature alone. Even toasting some some bread for some toast before I was coeliac, I might have been able to reach the bread in the pantry, but I needed to ask mum to pass me the butter. Just that constant need of having to rely on people. I was just over it. Totally over it. I was over having somebody watching me have a shower. Watching me wash my hair. Oh, it's over. Feeling self-conscious. I forgot to shave my legs. I was over having somebody comment on the sort of things that were in my bin and whether my diet was healthy enough. I was over the judgement that I received when I opened the door, if I had a new support worker, come and help me. Yes, for the hundredth time. I have friends. I just want it to be me. I wanted to shower alone and to wash my hair in peace. I wanted the privacy that I'd never had before. I can't deny my decision not to have support workers is inefficient. But I prefer to live in an efficient life than an unhappy one.
[00:17:20] Thank you for listening to this episode about how I live independently. I know the way I live isn't for everyone, but I hope you found it insightful or interesting if you did. Can you please leave a writing interview on Apple podcasts or share my podcast on social media? It all helps more people find the podcast, and I can tell you podcast growth is really, really difficult. So any hope you can give me? I would be so appreciative. OK, guys have a good week until the next one. Bye.