Loving disability



Walking to work this morning, I saw a young man with an older woman, running across the street hand in hand. There was a sense of urgency in crossing a busy, major road and a sense of joy too at their bodies, joined together to accomplish the task of getting from one place to another safely. It was one of those the biggest pleasures in life are contained in the small things or in this case, the little dangers safely traversed.

They walked in front of me. I watched them, the young man, his feet splayed as he walked unawaredly inelegantly enfolded  into the older woman: his mother, aunt, or caregiver perhaps. They were completely focused on each other, tender, present, joyful, and easy in their intimacy, easy in the closeness and the small (or large if a good life is a sequence of enough little pleasures) talk of the morning. It was beautiful to witness, the give and take, the mutual and reciprocal pleasure. It looked like a dance of intimacy and care so well-practiced that the steps are less important than the pleasures of dancing together.

So, why would I notice this, you may well ask. I was surprised by the mutuality, the reciprocity, not the intimacy in the encounter. I was surprised by how present the older woman was, her palpable pleasure in the young man. You may be raising your eyebrows here or should be. I've left out a salient point, the young man looked to be developmentally disabled; child-like in a body of a twenty-something year old.

I've been reading a fair amount of disability literature and the models of disability rarely mention this. The pleasure that is received by the caregivers. The focus, or at least the literature I have been reading, is usually focused on models of care, models of righting ruinous and stigmatising perception, models of integration, models that provide support and education for the families of the disabled. If parents write to capture the reality of parenting a disabled child, it is usually in fighting terms, no matter how dry or tender the discourse: my child is worth loving, why does society not see. If disabled people write their reality, there is this showing normalcy within abnormal conditions too. When parents or caregivers talk anecdotaly about someone who is disabled, they usually make explicit that the person is loving, as if this were in doubt. Something profound slips in these accounts.



The capacity to love, the what is received from the person who is deemed incapacitated. The need to defend or disavow what is already and unconsciously accorded to those we consider able-bodied. A similar kind of operation pertains for identity politics on race, gender, class. The imaginary where somehow reciprocity and mutuality become contained in stereotype, stigma and prejudice. The reduction of those intangible things that make life worth living, love flourish and bring all parties in intersubjective exchanges to a fullness of the human condition.



Undoubtedly there are stresses in caring for someone who is subjected to structural violences, requires more care in a world that splits our attentions and demands commodified responses, where value is accorded on unequal scales according to who is most human. In a world or societies rather that discipline us into regimes of value, what I witnessed this morning might have been a moment of mutual tender and intangible exchange that is not always constant for a  life enfolded by capitalism brings with it multiple pressures, and varying emotional, structural and psychological resources at any given time.



Pic sourced at http://www.idrs.org.au/



However, it made me pause and wonder, in which ways those who do not traverse life in ordinary, unmarked ways enable new capacities of caring, different modalities of attention, alternate requirements of engaing with the world. The older woman was fully present, and there was something joyous about it, something immediate about her attention and focus on the young man that made them both appear full. I wonder if this was a result of his 'disability', that its conditions generate presence and full engagement, a celebration of little victories like crossing a road successfully that might be all too fleeting, an acceptance of what is and a letting go of expectation, a mode of attention that is open and engaged, a tenderness and joy in the now.

I have heard people remark that their disabled child was a gift, and wondered at it, the need to say it. In a romantic view all children are gifts, that is if society were equal. Usually theses parents will say s/he is loving. I wonder now after this encounter if it is less about the child's very human capacity to love (although we know this is not always channelled well or reciprocated) or whether it is the disabled child teaching adults how to love in an unmediated way, beyond expectation, pausing after a harrowing day to bring their full attention home, bringing their capacity to care to the fore, opening them up to the moment; for there is no protection from the disabled child's need, no good reason to warrant the withdrawal of love, no good reason for distracted attention and probably bad interactional consequences too. In other words, does loving the disabled child give the adult a gift of the self, as most good loves do that, bring our highest self or most whole self into the world whereas anaemic loves tend to bring a defensive and thus fragmented self to the fore. I wonder how difficult it is to sustain or whether like toxic or resentful parental care it becomes a habit? I wonder why it's possible for some people or in some moments, like this morning and not others?

I have many, many questions and much food for thought. I'm just grateful to have witnessed this encounter today. Social scientists like to talk about the importance of contingency, this contingent moment's synchronicty is uncanny and necessary.