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.

Traditions of leadership

It is common in social science discourse to bring together beliefs, attitudes and behaviour as if it were a cohesive whole. It is also common for theorists of power to delink these three parts and look at the interstices between them, and how beliefs, attitudes and behaviours are brought to bear upon each other, to appertain the dynamic ways they reveal and conceal and enable the formation of relationships of power. Looking at what people do versus what they believe and say they are doing is important in understanding how ideology functions and how traditions are enacted. And of course, this has a bearing on inequitable relationships.

One needs only to look at traditions of leadership on the African continent, particularly by leaders who were at the forefront of liberatory struggles and the kinds of inequities they allow to flourish whilst mobilising talk about liberation. How the people, the actual real living people who their policies and practices fall down on are treated versus what leaders believe they are giving, to realise that these leaders are dazzled by their beliefs and their rhetoric. Their behaviours, the what is done in practice is soothed away by an attitude that justifies and of course, placates the restless populace. Its why the management of persona is important to despots, the paternalistic air, the distancing from actual details of the everyday, the gestures through talk of grand ideals that are not lived out by them, but of course should be lived out by the populace. The belief suffices and is treated as if it were behaviour. It is a peculiar kind of blindness, and all the more sad because the belief has so entrenched itself in the attitude, that the behaviour is not easily reflected on.

Sacrifice for the cause, it is worthy, tirelessly give your labouring body and relationships to the cause for it is worthy, occupy your hovels and your slums, for the cause requires it. And of course, the leader needs his respite from the hardness of the cause that the populace is fighting on his behalf, for how can he (and it is invariably a he) lead to glory if not supported, for he is the exception that will turn all the populace into exceptions, if only they worked hard enough. If they are disgruntled, it is because they have not worked hard enough, they are weak, angry, morally deficient, uncommitted and a whole host of other ills and the disease at the centre of the cause, is really their fault. And how can he the leader lead them to glory with so many among them that are deficient.

The cause becomes the spectacle and an explanation in and of itself, the ends of the cause is not meant for the populace for they are part of the cause. The ends have to be deferred by the populace, the expectation of fair treatment deferred for their is much work to be done elsewhere, the expectation not to be preyed on by the corrupt and bullies deferred for the world is not fair and there is work to be done, the expectation of the structures that support the work to be done deferred for there is much work to be done, and so it goes. And so corruption thrives, and small cruelties and the explanation is that it is so difficult to change a deficient system and therefore we must work harder at the cause. It is the disbelieving individuals who are at fault and rarely that a concerted practicing ethic of care, accountability and responsibility is absent from the leader. After all institutions and political systems are populated by individuals.

An ethic of care is meaningless if it is not practiced on a daily basis. No matter how strong the belief that grants it legitimacy, no matter the hard-won history. Within liberatory movements, if the behaviour and the belief do not coincide, then it is as dangerous as any fascist, totalitarian regime. We see this with Western democracies too, who will protect the belief at all costs, regardless of the terror it sows elsewhere. For the cause deems it necessary to exploit, deceive, classify who deserves consideration based on old, uninterrogated prejudices. And so the traditions of inequity remain, the beliefs that found them just have a new flavour. It is how a liberatory movement like the ANC can give lip-service to gender equity and yet allow practices that harm women to flourish, it is how most men still have power and the women who work themselves to the bone to support their causes are valued arbitrarily (and it is invariably women).

To change traditions of leadership, we need to change what we do and what we enable leaders to do. We have to look to their practices and not to their rhetoric to see which beliefs are embodied. It is not enough to believe differently, tradition is a praxis. Transformation is something that must be attended to on a daily basis. Some of the introspective questions we should expect from our leaders are what did I do today to foster an ethic of care, how was I accountable to the people in my charge, did I consider them responsibly before directing them instrumentally, am I treating them all fairly, what is my responsibility within this turn of events, how can I serve them so that they may reciprocate and enable me to bring about this equitable vision of the world? And mostly we should look to what they do and not the flourish of what they say.