It’s been a long time since I’ve written a blog, and it’s safe to say a lot has happened for me in that time. A lot has changed, some things have come to an end and new things have started. So I’ve been pretty busy, and life is still moving forward, but one thing hasn’t changed – I still love writing and speaking about life as a disabled person, and tonight I feel like sharing some of that with you.
18 months ago I moved back in with my parents in Cheltenham, having said goodbye to the city I’d called home for six years, Bristol. I hadn’t planned to stay at home for long, wanting to move out pretty quickly and have my own space again. 18 months on, though, I’m still here. I am now looking for my own place, but that’s a subject for another time…
In Bristol, where I went to university at 18, I employed my first PA, and in the years that followed I employed many more PA’s. I finally got to know what it was like to be completely self-sufficient and in control of every aspect of my day-to-day life, from how people washed my hair to how and when I exercised each week to how my food was cooked. Having a PA became an essential part of my life because they became part of me, enabling me to do many things others could do without support from another person.
They were like the final piece of the jigsaw puzzle. Imagine what it feels like when you finally slot in that last piece, how neatly it fits and how satisfying it is to complete the picture. That’s how it felt employing PA’s, because the support they provided fitted neatly into the gaps in my everyday life; they assisted me in the way that suited me and how I wanted to live, whether that meant washing my hair after breakfast because that’s how I liked to do things, or leaving a sandwich in the sandwich toaster for me to switch on when I was ready for lunch a few hours later. They completed the picture, enabling me to live independently and choose my own lifestyle.
Coming home has changed things, though. Living with my parents means that I can, to some extent, manage without as much PA support as I will need when I’m living on my own, but this comes with its own challenges.
I’m one of those people who falls in the gap in terms of the support I need – I don’t need enough to necessarily always need a PA in the house when I’m with other people, but I need enough that the people I live with would have to go out of their way to help me. For example, I need help making my breakfast, which someone can do when they do theirs, but what happens when I need it at a different time, or when we’re both going out to work and they don’t have time to help me as well as sort themselves out?
Both of these instances occur regularly in different ways with the various little things I need help with, and it does sometimes make things difficult because I currently have no choice but to rely on them for these things. This can be slightly annoying for them to have to go out of their way to do something for me and can make me feel like I’m not quite my own person within the household. I can’t get up and get on with my day because I need to ask someone to do my breakfast. I can’t have lunch until someone has made it for me, which might mean stopping what they’re doing for a few minutes, and I’m very aware of that every time I ask someone to help me. They’re still fitting the final jigsaw puzzle in place with whatever they’re doing for me, and it’s roughly the right shape, but it’s from another puzzle so it doesn’t quite fit as comfortably as it should.
Having a PA coming in, though, changes things completely. For the past year I’ve had a PA coming in twice a week to help me before work and then to drive me to work. Once again, it feels like they’re completing the puzzle with the right piece because they’re coming in to fill the gaps of what I can’t do and because that’s their role it feels comfortable, it feels right. For those days I’ve been able to get up and go to work completely independently of my parents, which means that when I do see them there’s no feeling of reliance and I am my own person within the household. It makes a big difference.
As well as the everyday things I need help with there are other things around the house I can’t do, like hoovering my room or changing my bedsheets. These things matter too, but because they’re tasks that don’t necessarily fit in with what others are doing on a daily basis I’m far less likely to ask someone to do them. I haven’t been asking a PA to do these things because they’ve just been coming in before I go to work, when time is limited, but there have been a couple of times in the last year where they’ve been in at a different time of day or for a different reason. It’s felt so empowering in these instances to be able to ask them to do a few extra things that I wouldn’t otherwise do, or that I’d feel awkward having to ask somebody else to do because it’s an extra task for them.
PA’s are an essential part of my life, and living with my parents doesn’t change that. They fill the gaps in a way no one else can and in doing so become a part of me because of the way they assist me. Without them I can’t be fully in charge of my day-to-day life in the same way everybody else can.