Having a disability has meant that since before I was born it has been the place of others to label, define, and interact with it. This has come mostly from the necessity of defining it for others. Labeling my body as disabled has made it recognizable to professionals so that I can get the support I need to live an ‘independent’ life. I have a love-hate relationship with these labels and the support they purchase. My body is not a very private thing, as someone who needs support to get up, dress etc. Privacy is the thing I exchange for the ability to move in the world. Sometimes this feels like a small thing and sometimes bigger. It generally depends on the circumstances, who I am working with and the ease with which they can navigate this weird line between work and being in my home: the job being me, my body. There seems to be a huge emphasis in the working world on economic self-sufficiency. For me to even consider accessing this world requires some enabling in the form of care.
Since I first began using the support of people who were not my family it has puzzled me that this kind of intimate work can possibly be considered low skill or minimum wage work. It requires a level of social dexterity that is simultaneously imperative to the work and at the same time not appreciated as skills. Negotiating boundaries between what is a home and a workplace and what is a private task is skilled work. As it is the first interaction of my morning it has the power to change the tone of my day. I can either feel empowered or transgressed by such interactions and, luckily, it has lately been the former, mostly because I am working with people I know well. But how do we talk about this kind of body work when in anyone else’s life—as babies, as elderly people—this kind of work is seen as a familial duty and completely altruistic; the labour of love?