Disability and the City Part III

Bed pan stories

“Yet in the different voice of women lies the truth of an ethic of care, the tie between relationship and responsibility, and the origins of aggression in the failure of connection.”- Carol Gilligan.

This piece will stray away from, but not abandon, the discussion about navigating public space with reduced mobility. This time let’s take a little peek into private spaces (ok, let me admit it now:  this sounds more fun than it is!J)

After the initial shock and pain of this injury has worn off,  the first thing that hit me is how dependant I am on others for the most basic things. The excretory system takes on a whole new dimension. Mundane things like shitting and pissing become a chore.  When loved ones stick a bed pan under you and clean you up after, one is forced to break personal boundaries with those people or realize that the boundaries don’t actually exist.

While admitted at the general ward at the AIIMS Trauma Centre, the class pyramid could be seen and felt. I was at the very top. But class wasn’t the only difference between me and the other patients. With one exception, almost everybody else I could see around me were men. All of these men were being taken care of by women, presumably their mothers or wives. While in the hospital, I had four friends, (two men, two women) taking turns as my primary caregivers. Every time the curtain was pulled shut so I could pee, any one of them could have come out to empty the bed pan. The four friends told me that the fellow patients and their attendants would joke with them when they were leaving saying ‘duty over??!!’. No one could figure us out: not the hospital employees, not the patients, and definitely not the other caregivers. Not only was there the eternal mystery of what relationships exist between these people and me, but also a mild scandal when men walk out with my bed pan.

Care and its Ethics

In the early eighties, Gilligan and Kohlberg among others popularised the concept of  ‘Ethics of care.’ (http://books.google.co.in/books?id=XItMnL7ho2gC&printsec=frontcover&dq=in+a+different+voice,+gilligan&hl=en&ei=HJFQTKHdIofQca3nzY0H&sa=X&oi=book_result&ct=result&resnum=1&ved=0CCsQ6AEwAA#v=onepage&q&f=false; http://books.google.co.in/books?hl=en&lr=&id=33OpldPlDgQC&oi=fnd&pg=PA3&dq=ethics+of+care,+disability&ots=bYbWgGuEd_&sig=vcWNtUArt-POf0KYvSu8fw5DSYc#v=onepage&q=ethics%20of%20care%2C%20disability&f=false)

In a nutshell, the ‘ethics of care’ is about the need to acknowledge that we are all interdependent on one another. Some of us are more vulnerable than others at various points and it is important to consider each of our personal or political choices in terms of the vulnerability of others. Based on this, every context should be considered from the perspective of the care-needs of all those involved. Interdependence in this context includes everything from everyday physical and emotional needs to the larger picture within existing systems which hold within them a range of interdependence(s).

Feminist perspectives towards the ‘ethics of care,’ have added a gender analysis to care in the private realm. There is an attempt to evolve an ethics that acknowledges our interdependence while not taking the existing systems of care as default. This perspective encourages leaving room for challenge and exploration within these interdependent relationships.  In addition to this ‘interdependence’ also counters the default vehement ‘independence’ of many other theories both progressive and otherwise (from utilitarianism to Marxism and some feminisms). As it turns out,  tension between individualism and the collective comes out when these theories are applied to care.

In an attempt to explore precisely this politics, within feminist queer spaces  in India, some of us have been, thinking, writing and attempting to live lives that question existing systems of family and kinship as our default support structure. Further, the attempt is also to create a range of alternatives or at least a realm, theoretical and practical, that makes space for such exploration. Many of us who’ve been part of this thought process realize the responsibility that comes with it and the immense effort that it takes. It isn’t the dreamy, charm of hippie communes that we want to replicate, but a reliable support structure that sees us through upheavals, social, political, economic and inter-personal. The few days in the AIIMS Trauma Centre ward were one such moment. It moved me to see the strength of these structures (or relationships or arrangements) and the ease with which they can exist and step up in the times of need. In this structure there aren’t assumed roles. It is a conscious choice to not have a default care-taker. The discussions of division of labour of the care were had collectively and decisions were made based on the comfort of everyone and a range of practicalities. This collective decision making process is an important exercise because of the physical and emotional work that goes into care-taking.

I believe that caretaking always looks easier than it is. One of the things I’ve come to realize over this period is that there is a difference between primary and secondary caretakers. I’ve noticed that the primary care takers are the ones who’ve taken the time and the effort to tune in to the needs of someone who is physically different from them. In my case, I move differently now. For instance, our home in Chennai has many levels, a fact that has not occurred with such intensity to any of us before. Given the circumstance, many a times, it wasn’t me who would latch on to a possible mishap while hobbling, but my mother who is currently my primary care-taker who troubleshoots most of the obstacles that would interfere with my limited mobility.  It is clear to me that it must take a lot of mental space to move around and think like someone who hobbles around with a walker while she walks around with both her legs.

In short, care-taking is taxing labour that we all need to do at some point or the other. This labour most often falls on the shoulders of kin and especially women. In fact, when men do intimate care- giving like picking up bedpans, they are looked at with admiration at best or a raised eyebrow at worst. We need to acknowledge that all of us do or will need some kind of care at some point or another. With this acknowledgement, we need to evolve a way of thinking about this that is radical and practical.

Firstly, I think that it is important to break down the charade of ultimate independence. Interdependence means that we need to learn to trust another person with our bodies. These two ideas run counter to each other. We need to find ways in which we can live our independent lives while creating systems in which we acknowledge the need for interdependence. Second, we have to work with existing systems of care differently or create new support structures of care for those who are disabled (permanently or temporarily), or aged or ill and in a myriad other circumstances. If this is our political project, then we also need to think substantially about evolving unself-conscious systems of interdependence at all levels so that we are all taken care of.

Personally, the ‘ethics of care’ and ‘interdependence’ has become another part of a broader political worldview.  This injury and this time to think has strengthened that thought process. It is hard to ignore the possible oppression of the reverent belief in un-thought out independence of oneself and others.  The ‘ethics of care’ in many ways then could be a theoretical as well as a tangible basis for the argument that we need to not only deconstruct default, assumed support structures of family and kinship, but rework them and create newer more egalitarian ones. In the South Asian context, maybe our dissent against existing support structures and the default, oppressive systems of care has moved us away from thinking, reflecting and speaking about care itself. A different perspective would include not only the need to make room for new loves, political structures and non-normative laws but also to let us choose who cleans our bed pans.

There are a range of other aspects to explore in this context; workers who perform the labour of ‘care’; the political implications of caretaking in existing and newer structures in terms of class, caste, region, religion, sexuality, gender etc warrant a number of discussions. The question of the role of the state in providing adequate and free care to all irrespective of the family structure is another case in point. The fact that there is a government hospital in this country like AIIMS where anyone can receive good medical care with relative ease is something to consider.

One could go on and on, but this, however, is just a brief note to initiate a conversation.

5 thoughts on “Disability and the City Part III”

  1. the myth of independence is a relatively new myth. breaking into smaller and smaller social units, we now think the logical conclusion is a unit of one. of course, in practical terms this is not possible, and there does not seem to be a future possible with this either. interdependent units of people have existed whether we call them family, tribe, religious groupings etc.
    the point you make of women being considered primary care givers an interesting and correct one. apparently in a straight marriage/relationship if the woman is the one with a serious disease, there is much more chance of the marriage breaking up than if the man has the disease. i wonder how it is in a male homosexual relationship in case care giving is needed?

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  2. hey ponni, just read your pieces in this series with interest. much to think about. truly there is so much structural ‘default’ that is condoned, that when we contest it we tend to use up our intellectual and emotional energies in sheer opposition. your musings on the ethics of care (which i recall you emphasised during the panel discussion at queer nazariya as well) are an important reminder of a whole aspect that we risk overlooking. hope you’ll soon have a well-healed leg to stand on, and that you’ll still keep writing from these margins!

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  3. Dear Ponni,

    Many thanks for your writing on the ethics of care, which I read with interest. I have spent my fair bit of time in and out of hospitals, primarily as someone who has been assigned ‘night duty’, and I have always found the solidarities of ‘care’ fascinating.

    I am also thinking of the situations of extremity, when the person you are caring for is actually about to die. I feel very strongly that we need to have a legal right to euthenaisa, because one of the most exhausting things, both for carers and the cared, is the slow fatigue of sitting out the pain that we know can end only in death. I would much rather have someone I love and care for go easy into the night, than to watch them fade away in pain. I would want the same for myself as well.

    Can caring mean caring enough to take away the life of someone you care for so that they can be free of pain?

    I strongly feel it does.

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    1. Thanks for the comment and I don’t think the discussion is a simple one by any stretch. I think the hassle comes in with the number of structures within which we live and function that makes death as difficult as it does life. Euthanasia being a classic example. In essence the instinct would be to say ‘yes, we should be able to make the choices to take our own lives or that of others to relieve them of pain’. however, it seems like the nittigritties of making that happen officially are too dangerous for us to even consider it as of now. In our world, the way death is regulated in terms of suicide or euthanasia, which right now is almost on the same footing if not more grave than murder or attempted murder etc has much in common with how life is regulated in terms of our intimate spaces and choices of work for instance, when it comes to sex work. This regulation we know is based on a certain morality and is not egalitatiran and maybe can never be due to the nature of ‘regulation’ itself. To change this is a much more complicated process and has to deal with a range of socio-political paradigms and the ethics of them all. The argument is that within this thought process care be considered seriously along with pain and other factors.

      there is also other systems of thought unfamiliar to me about the view on life and death from a range of philospohical perspectives. I’d imagine a certain rigorous engagement with all of them before arguing for or against euthanasia just out of a sense of skepticism about the simple liberal answer of ‘my life, and my right to take it away’. Often dying just like living might also be a luxury available to some for a range of factors. Or maybe not.

      If I were to imagine the situation you describe in my life, I would also at least partially wish euthanasia was possible here but would be plagued by all of these confusions and questions and much more I would imagine.

      Well. Do not have a definite response am afraid but just a whole lot of questions and confusions.

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  4. Dear Ponni,

    agreed, on all counts, the grey zone is a big zone, when it comes to matters of life and death.

    I have to say though, that though I am shy of claiming luxuries alive, I would have no hesitation or guilt in desiring the luxury of a good death. Is that hypocrisy? What do you think?

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