Do mobility aids make me more disabled?
Yes. You read that correctly. It's quite a question, isn't it? My answer might surprise you...
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Peta [00:00:02] Hello and welcome to The I Can't Stand Podcast, the podcast, answering your questions on what it's like to live with a disability. My name is Peta. I'm your host. I have cerebral palsy and for the sake of this conversation, it's very important that you know, that I use an electric wheelchair full time.
[00:00:24] If you'd like to ask me a question, there are three ways you can do so. One, follow me and message me on Instagram at @petahooke to email me at email@example.com. All three, message me through my website, icantstandpodcast.com. OK, without any further ado, let's get into it.
[00:00:58] This week's question came from Linda. Linda asked me.
Linda [00:01:05] Peta, what do you think, do you think mobility might make you more disabled?
Peta [00:01:13] Now, I have to admit, when I first got this question, I was a little bit taken aback, but as I thought more about it, I realised Linda had a point. Maybe mobility aids do make me more disabled. There are downsides, of course, to being in a wheelchair. I talk about them every week on this podcast, particularly not having the ability to transfer myself from my wheelchair to the toilet is a massive issue for me and plagues me every day in my life. For example, I'm about to make a two hour round trip to go see my chiropractor and I can't go to the toilet during that whole period. If I could, then I probably run out and also do some errands but because I have to run home, I end up coming back home exhausted and thinking I can't run any more errands; they have to wait till tomorrow.
[00:02:15] Going on from why I'm going to the chiropractor today, I'm currently aching, my posture definitely gets negatively affected. Now, I acknowledge that could happen in an office chair or in a wheelchair, but there's got to be something to that phrase that I keep hearing that really scares me, that 'sitting is the new smoking'. As someone who doesn't really have a choice and who sits, but the whole period of her day, that really scares me. It is possible that something could go wrong with me sitting in my wheelchair all day. But in saying that, I am who I am because I'm in a wheelchair. When I was really young, my parents had a choice, the doctors and physiotherapists told them that I could either focus on being academic or focus on maybe one day being able to walk. It's probably no surprise to you that my parents chose my education. What that meant, though, in practical terms, I went from going to physiotherapy four times a week after school in primary school. To then going into high school and using that extra time to study. Because of that, I can't deny my physical ability has deteriorated since then.
[00:03:50] I believe my parents made the right decision, I mean, of course, I would. It got me to this point and from my perspective, walking doesn't really get me that much more in comparison to my education that given me the confidence to use my voice, articulate myself and feel in control. I'm able to conduct myself in a certain way and engage with the greater community at a deeper level. I love the fact that I'm so independent and I can do anything that anybody else without a disability can do. Within reason, of course, I mean, I'm not about to go skydiving. Without my wheelchair, I wouldn't be able to live in the house that I live in, I wouldn't be able to look after myself. Basically, I would be a vegetable in bed without my wheelchair. I don't have the ability really to use a walking frame, walking sticks or those like old lady trolleys that you see. I don't have the upper strength and the inner balance to be able to stand independently without assistance, so my wheelchair really determines the level of independence that I have.
[00:05:10] Without my wheelchair, I wouldn't be Peta. While, yes, my wheelchair in itself has its issues and its downfalls. But I don't have an alternative, I believe. I guess that just comes from knowing and understanding how much my wheelchair gave me when I was six. When I went to kindergarten, I was using a walking frame. Around at home when I was really little, I would crawl. I didn't have a wheelchair until I was six and the only reason why I went into a wheelchair was because I was frustrated that I couldn't run around quick enough with my friends. I wanted to make friends effectively going into Prep. So I decided to get a beautiful, cute pink wheelchair. I'll post a photo. I'd always had pretty high self-esteem, but I loved being able to run, quote-unquote, "run". I didn't run, I wheeled, but run around with my friends in the playground. And in the end, it determined my participation and the level of inclusion I felt when at school and at home and in society. I was also more productive in my wheelchair. It takes me three and a half seconds to go from one side of the room to the other. Whereas if I had to use a walking frame, it would probably take me all day. I remember when I was in primary school, I used to have physiotherapy while the kids were doing sport and I use something called a K walker I would transfer out of my wheelchair at that stage, I could still do that. That would sit me on a stool and I would get up in my K walker, which is like a frame, and walk from one end of the hallway from the other. Now, I did this for a number of years, twice a week. The first week, I could only walk 10 metres. Three months later, I could walk twenty-five metres. And by the end of the three years, I could walk, maybe seventy-five meters. I didn't improve past that period and as soon as that school holidays happened and I had a few weeks off, I would basically start from the beginning.
[00:07:43] I mean, I'm sure it's like for you, if you guys don't go to the gym for a number of months, you have to start almost all the way back at the beginning. And for me, if I stop. I really, really have to start all the way at the beginning. The beginning of taking my very first steps again. I want to be super clear that even if I did go to physiotherapy five days a week, I would be so exhausted. It might take four days for me to feel back to normal again and at the same time, I haven't been able to do my washing. I haven't been able to cook food, haven't been able to look after myself because I am that exhausted. To me, I value my independence so much that learning to walk again and not lose mobility aids, they sort of cancel each other out.
[00:08:43] There is definitely a stigma that I hadn't realised when it comes to using mobility aids. I learnt a lot the day that my grandma, who at the time was 92, refused to get a scooter. She refused to get a scooter to use outside so she could go down to the shops. She refused, knowing full well that her granddaughter is in a wheelchair. She refused because she was embarrassed. She didn't want to be seen as old and she didn't know whether she could learn the new skill of using the scooter. All valid things, even though I did really struggle in the fact that she didn't see that I live in a mobility aid every day and just got on with it. But I understood where she was coming from because mobility aids redetermine someone's identity. While for me my mobility aid determined my self-esteem, determined that I could be included, could participate and could feel 100 per cent like myself. But I understand for others, particularly those who aren't born with a disability or have a degenerative disability, mobility aids can represent a change that they're not ready or willing to take on. A change in their own identity that illustrates to them that they're getting, quote-unquote, "worse".
[00:10:18] Everybody's different, and I can appreciate how people can see mobility aids in a negative light. So to answer the question, do mobility AIDS make me more disabled? For me, Peta, sitting here, they don't. They don't make me more disabled. They determine my independence and make me less disabled, make me more the person that I want to be. I appreciate that isn't the case for everyone. Everybody has very complicated feelings and relationships with mobility aids because, in the end, it sucks that we all have to use them in some respect. That we don't have the healthy bodies that many other people have and also take their bodies for granted. But I will do whatever it takes to be the person that I want to be to live the life that I want to live, and if that means being in a wheelchair, then so be it.
[00:11:26] Thank you for listening to this week's podcast. If you like the podcast, can I encourage you to write and review if you listen on Apple podcasts or subscribe on whatever platform you're listening on. Or shared on social media. Don't forget to tag me so I can say thank you! Until next week. Have a good one, guys. Bye.