...a beautifully volatile and disabled existence of raw humanity, art and activism...
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Everyday Writings

how do you create a home?

21 August, 2017

So, I haven’t been present on Facebook for months and hiding from the various social terrorisms that are currently in the world and in the media. But for a few weeks I have been writing a status in my head (as you do now days when you want to connect, but don’t at the same time, to reaffirm your aliveness). I haven’t been able to consolidate my thoughts or even work out what I need to say to convey my egocentric contemplations to feel socially existent. However, earlier this year, I embarked on a terrifying task of creating a home, aka a life away from my mother. While I didn’t know how to do this, or even what it would look like, the idea was something that had been bubbling for years, but it abruptly knocked me over the head and set an unusual fire in me. So, I began with what I am very familiar with: being courageous, asking for help and communicating generously. Luckily, a friend was also looking for another place to live, and she was enthusiastic and keen to nurture my decision. She could surprisingly envisage me as someone she could live with too. We then devoted many Saturdays, time and energy to scheduling, viewing, and perfecting the art of applying for places. 

I also started searching for, and interviewing, people to join (and create) my “care collective”, because I have never been comfortable with the non-reciprocal nature of receiving paid support, especially from disability-trained ‘carers’ who often have irrelevant ideas of how best to “care for” me. Since I don’t need personal, personal care, I can afford to find it invasive, and a bit frustrating to have people who aren’t familiar with or even invested in me doing reasonably intimate tasks, like folding my undies. Through putting up an internet ad, I met, and had some good conversations, with some lovely and decent humans, some of who I subsequently hired. 

After a few misadventures, a few failed applications and then with the support of my mum, we got approved for a little house with a little backyard. It is close to heaps of spacious parks and we even can walk (or if I am feeling energetic, I can ride my trike) along a river. As soon as we were able to move in, I contacted the people I had “employed” and arranged an interim weekly schedule of meal shifts and things. Then I thought that holding a meeting with those people, my parents and friends would be useful to create a sense of a community around me and work out a set roster of shifts together. It was good for everyone to get a cohesive idea of my expectations, wants and just basically how I want to conduct my life. My service provider, Northcott has managed to blame me for being hopeless at employing the people I have selected though, so I once again thank this chaotic universe for my middle-classness, because I can afford to pay my people directly, at least for a little while. With family and friends also helping out, it’s been a very easy and simple thing to create, my support system, and a quiet home that I am always relieved to come back to.

Independence has never been one of my priorities in life, even though it’s hard to think how it has not been, because us disabled humans are constantly told we need to be independent to have a decent quality of life. It just might be semantics, but I have always said I just wanted autonomy, not necessarily independence. Since I absolutely need people and not just physically but emotionally too, I can’t deal with this fucked up life without honest connections and, meaningful and mutual relationships. In my mind and for me, striving for independence and framing being reliant on others as a weakness is an unrealistic and damaging notion. 

Autonomy is more about having my decisions and ways of doing things respected and supported, which surprisingly is something I still need to work on. Not that people don’t generally respect me, it’s more that I find myself to be very unimaginative, passive and accommodating. I usually defer to others, because I am too ambivalent about things, and I don’t know how to quickly gauge my own opinions on mundane stuff. This has been easy to overlook and not see as a deficiency, because my parents have always just compensated and made decisions and done things for me and with me. 

It has been such a novel experience, to be mutually responsible for creating a warm, accepting and comfortable home (without using the heater too much, because I am also equally responsible for paying the electricity bill now). Deciding what goes where, problem-solving little issues, like how to hang the shower curtain and having equal say about the décor, all new territory for me. It takes me days to process these things, but that’s really fine, because it’s our space and there’s no time limit. I also have been forced to start to cook and think ahead in terms of what food and things I need. I have discovered I can survive and function pretty okay, just using my own brain.

My housemate/friend is just excellent. She has been amazingly encouraging of my whole precarious being, and she is very tolerant of my need for order and tidiness too. She teases and supports me in equal measure, which is an awful lot, and provides ice-cream and cups of tea when needed. This is how one makes a home, this is how one makes a life, isn’t it?

Georgia Cranko