Imagine having to wear the same outfit every day for eight years. How would you pick that outfit? Hard decision right? Well, that is what it is like picking a wheelchair.
The thing that determines your independence and how people see you. So how do you go about picking the right wheelchair for you?
You can ask Peta a question via:
The website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
You can follow Peta's personal account on Instagram @petahooke
Episode Transcript:
Peta [00:00:02] Hello and welcome to The I Can't Stand Podcast answering your questions on what it's like to live with a disability. My name is Peta. I'm your host and I have cerebral palsy. This week, I was asked, what is the process of getting a wheelchair? It's quite a process. Let me tell you.
[00:00:24] If you'd like to ask me a question, there are three ways you can do so. One, by my Instagram at @petahooke, PETA HOOKE (spells out), via my email at icantstandpodcast@gmail.com or by my website, icantstandpodcast.com. Without any further ado, let's get into it.
[00:01:00] This week's question is:
[00:01:03] Peta, What's the process of getting a wheelchair?
[00:01:08] Now for this conversation, I'm going to talk from an Australian perspective; but there are still a lot of tips and tricks for you guys, regardless of where you live. Deciding what sort of wheelchair you want to get is a really tricky issue that needs high levels of consideration, because in the end, once you get it, it's really difficult to change your mind.
[00:01:32] The life cycle of my wheelchairs are normally about six to eight years, so it's a long time to sit in something if it's not right. You've got to understand whether you want, firstly, a manual, a self-propelled wheelchair, electric, which is what I use, or a hybrid. Which is a self-propelled wheelchair with a motor that generates energy from you, self-propelling yourself and then when you need a rest, you can, from what I understand, activate the motor and then the wheelchair will move with no assistance.
[00:02:13] Regardless of whether you go for a manual or a hybrid manual or an electric, everything on a wheelchair is customisable. For me of always gone with electric. I've never felt like I've had the proper capacity to be able to be in a wheelchair and also I don't really enjoy being as low as you are when you're in a manual wheelchair. On the occasions that I had to go into a manual wheelchair for a reason or another, I feel like I'm sitting on the floor, whereas my electric wheelchair can actually elevate so I can go up to like five foot five or five foot six and talk to someone at eye level.
[00:03:00] Although that's not considering the fact that a lot of people who use manual wheelchairs can actually a lot of the time stand, transfer or possibly walk a few steps. So I can understand why elevation isn't as important to people in that situation, because they may be able to stand and talk to someone and look at someone at eye level. Manual wheelchairs are easier to transport, they're really light and also you're more active and in a manual wheelchair, like I said before. Some people even have wheelchairs specifically for the sport they play. Some people prefer manual and some people prefer electric. It just depends on the person themselves, their capability and also their preference. There is a bit of unsaid baggage, I believe, on the sort of wheelchair that you pick. I know a lot of physiotherapists prefer clients to be in manual wheelchairs, and I can appreciate that. I mean, you're using your body to move yourself through an environment versus I just move a control stick. I'm not using my lung capacity. I'm not moving my body. I can appreciate that that is not the healthiest choice for a person to make. The level of independence that my electric wheelchair has given me has been invaluable and I believe I wouldn't be able to match that level of independence in a manual wheelchair.
[00:04:39] Along with being able to go up to someone's eye line, I'm also able to elevate in my own home. So, for example, I can't really reach the washing machine that well. I need to elevate to my highest point to be able to reach the soap container. Little things like that just mean that I don't require help. I can actually do it because my wheelchair is flexible enough to give me the sort of independence that I crave.
[00:05:13] OK, so you picked the type of wheelchair that you want. Now, how do you go on to pay for it? In Australia, we now have something called the NDIS. The NDIS is a funding mechanism supported by the government. So now because of the NDIS, I'm not out of pocket for my wheelchair. But if your disability has resulted from a road or car accident, you go through the TAC rather than the NDIS. To be eligible for the NDIS, you have to be aged between seven and 65, live in Australia as an Australian resident, or have a special visa to be able to get the NDIS if you don't have an Australian residency. Your disability has to be permanent or likely to become permanent to get on the NDIS and your disability has to impact your day to day life.
[00:06:16] So to gain funding for something as big as a wheelchair, it requires you to go through a number of assessments. Those assessments are really varied based on what you're trying to get and the sort of disability that you have. The people that come to assess you are normally strangers that don't know you from a bar of soap and just know your name, your participant number and your disability. So over a period of time, normally a number of hours, the participant with the disability has to prove or if they don't have the capacity to and advocate for them on their behalf, has to prove to these medical professionals that they need a wheelchair. So whether that means going through lots of yes-no questions of what I achieve in a day, explaining how I use my wheelchair or plan to use my wheelchair, the sort of hurdles that I experience in my life that could be better helped with a different wheelchair, whether I'm in pain because of my old wheelchair, not having enough padding. All sorts of things that you're trying to put across to a stranger that you need this wheelchair. You only normally have one assessment and if it doesn't go well, it's really hard to get the NDIS to get you to have another one. To prove that the assessment was incorrect. So these assessments are really important and super stressful because this person that you've never met before determines whether you get a new wheelchair or not. This scheme has had many problems, which I know a lot about, both personally and professionally, but when I look at the overall, the NDIS really has positively impacted my life.
[00:08:17] Getting a customised wheelchair can be pretty full-on. You have to go through every dimension and make sure that the wheelchair that the company is building for you fits your needs and is comfortable. It's quite tricky when you get placed in a new chair and three people look at you and say, does that feel comfortable? Do you need the cushion to be moved more to the left, up or down, and then you sort of have to sit there and go, oh, I don't know, actually, was I more comfortable before or after? A bit like the optometrist, you know, when they put the glass in front of your eye and they go. Before or after. And you have to sit there and go, oh, I think the E was better before or was it better after? I don't know.
[00:09:15] So you've got your manual wheelchair in your mind. Seems pretty simple, right? No, not only do you have to make sure that the seat is comfortable like I said before. Have you decided what sort of wheels you want? Do you want ties that are super thin, streamlined, that are easy for you to push around at home? But also I might give you a flat tire when you're out and about. Do you have a lot of hills that you have to push yourself up? Is your driveway quite steep? Every one of those decisions can impact you going forward. So it's really important that you think about every detail of your life and that you try not to become overwhelmed with the decision. You've got to remember that you're unique. You're an individual and maybe Sally whose building you the wheelchair doesn't know that you like to go salsa dancing and your salsa club have cobblestones on the way. I know that's very niche, but, you know, you never know. Just because you use a wheelchair does not mean that your life isn't varied.
[00:10:35] I'm super fussy when it comes to my wheelchair, my wheelchair manufacturer will vouch for that. I know what I want basically. This is wheelchair number five and I know what sort of model I like. It's quite unusual. So people in electric wheelchairs to have the big wheel at the front of the machine, for example, instead of the back. It's quite unusual for electric wheelchairs these days to only have four wheels and not six. The reason why I prefer the configuration that I have is basically my brain knows how to drive a wheelchair without thinking. And when the configuration of the wheels is different, my spatial awareness goes all over the place and I feel like I don't know how to drive a wheelchair. My current wheelchair, I have to admit, is a bit of a work in progress. I love its speed and how safe I feel in it. But I have to admit, I don't love the colour of my wheelchair. If you don't know, my wheelchair is black and white and if you follow me on Instagram, you know that black and white really isn't on-brand for me. I love colour. Colour is life. It brings me joy. The upholstery in my wheelchair is also black, I don't like it, but I didn't have a choice to have something customised. Because the wheelchair manufacturer is also a brand, they also want to remain consistent. Their wheelchairs are different, but they're all pretty similar. There's not much individuality when it comes to wheelchairs, there is when it comes to comfort and practicality, but anything not practical, that's about expressing your identity. Still needs improvement. You know, I still haven't got my rainbow glitter wheelchair that I want. Wheelchairs now are robust enough, whether you have a manual and you play basketball on Tuesday nights or you have an electric and you like to go hiking, there are all possibilities now. I just wish there would be more colourful.
[00:13:18] Thank you for listening to this week's podcast. I hope you enjoyed it. If you did can I ask you to write and review the podcast if you listen on Apple? If you listen on Spotify, tap that little heart. Or instead, if you could share the podcast on social media, make sure to tag me so I can say thank you or just mention it to a friend that you think might find the podcast interesting. Until next week bye.