Coming to terms with it, getting over it, moving on from it, coming back fighting these phrases to me all assume movement some kind of active experience.
What would be my own experience of the slow process of becoming more disabled by society, the way my body has been displaced by the world around me, it has been ejected from buildings I can not get into, and made invisible and visible by the light of different spaces under the gaze of those who call themselves able.
At the same time I experience a suspended-ness, a non movement a less movement. I have now discovered the activeness in the stillness and the fight in the lying down.
I do not feel a progress, I hate the idea that I must learn from this experience; that I am made stronger by my body becoming weaker. I feel forced to be stronger because the world has shut me out and I have to crawl my way in or is it drag my tired legs in, breathe in, keep pulling my fatigued, weak and pain ridden body into the world that wants to push me out.
I struggle with the desire to make my pain visible in a fuck you I’m in pain kind of way while at the same time wanting permission to be invisible to not be a portal for the worlds projected feelings of discomfort to be placed. Yet I do not want to be rendered invisible for the gaze to look through me to pretend that I am not there, that I am nothing to do with the gazer, that they can distance themselves from my body and from their own body’s weaknesses and fears.
Maybe its not a coming to terms, it’s a sitting to terms, it’s a lying down to terms, it’s learning to save the energy for another day or another fight.
I feel that maybe the terms that I am expected to come to are terms which involve the acceptance of a disabling world, the terms I must ‘come to’ are the terms of - putting up with; getting used to the ways that temporary able bodied people (TABs) fail to see me and my access needs. The social acceptance of the way things are, the pace of life, the lack of patience, the stairs, the lights, the chemicals, the abuse, the assaults, the lack of a holistic medical service, and the expectation that disabled people overcome their physical limitations quietly in a way that does not disrupt the lives of TABs in any way. These are terms I do not want to come to or lie down to.
Often the experience of becoming suddenly disabled or more disabled is likened to the grieving process. There is a lost of a past life and the acceptance of a new disabled life. I think yes I have a mourning, and there are days I want my old life but the greatest pain of this change in my life is the pain of being left out side by society. I know that I could still live a life close to the life I had, that I could be less isolated more able to have the life I want and what stops me is not my inability to be a heroic disabled overcoming my limitations, no what stops me is the people around me not thinking about me, not caring that I am not there. What stops me is the government’s lack of support for me to live in a place that suits my needs, to access the right kind of transport to have the human support I need in my daily life.
It is my task to hold on to the knowledge that it is not me that has to come to the terms. That those terms which do not make the world accessible to all bodies are not terms I ever want to sign up to, I don’t want those terms, to those terms I will not come and until the barriers to my exclusion are addressed I will not be coming anywhere I will be crawling, limping my way into the world with a fuck you I will be lying down refusing the terms until all our bodies are included.