LettrineI wasn’t going to post this til I’d thought about it a bit more, but Emily’s post made me think about the legibility of bodies, and I’d kinda like this post to sit on da tubes in dialogue with hers, so…

If this post title sounds a tad familiar, it probably is. But part of the technique that Eva Kittay uses in her article, “The Desire for Normalcy,” from Erik Parens’ book Surgicially Shaping Children: Technology, Ethics, and the Pursuit of Normality is precisely to engender some sense of how that familiarity might work, and how, exactly, those kinds of familiarity or community might be used to challenge normalcy, which so often passes itself off as monolithic and unchallengeable. (In lots of ways, I’d want to use this discussion to complicate Foucault’s conceptualisation of biopower as operating through biopolitics and anatamopolitics, because he claims that these twin poles are connected precisely through ‘the norm’. But I’ve already written about that (elsewhere), so I’ll have to come back to it later. So for now, I want to pretend to be able to get away with not talking explicitly about Foucault, and a bit unfairly characterising him as monolithic-ising ‘The Norm’. Later. I promise.)

The context of the book this article is in, actually, demonstrates precisely how powerful ideas of normalcy are. Kittay isn’t about to challenge this; in fact, she binds normalcy to desirability, seemingly grounding the subject’s desire in the desire to be desired, dependent, if mainstream discourse is to be believed, on to what extent we achieve normalcy. Rather, what Kittay is trying to do is show exactly how much space there is to challenge and resist normalcy in and through normalcy itself. On the one hand, this seems like fairly standard Foucauldian fare—of course, power has to produce resistance. On the other hand, Kittay’s position is unique in that she makes this resistance not just comprehensible in a ‘I-can-see-how-that-might-work-for-some-people’ kind of way, but in a very familiar sense.

“I have a daughter, now grown, who meets few of the standard norms of 34-year-old women. She is profoundly dependent, having very significant cognitive impairments, seizure disorders, and cerebral palsy. When she was first born, many well-meaning persons urged us to put her in an institution so that my husband and I could live “normal lives.” But we had immediately fallen deeply in love with our sweet, beautiful Sesha and I felt very much like a normal mother—one who would not consider giving up her child, discarding a child because she didn’t meet someone’s expectations of what a child should be. In this, my normality as a mother normalised my child.” p. 92

Thus the first move that Kittay makes is to set one kind of normalcy against another. Yet even this is significant, because in doing so, she makes normalcy explicit. That is, instead of only leaving the abnormalcy of Sesha to mark normalcy (by its absence), Kittay draws attention to what might usually be left as unmarked, as unthought, as naturalised: the normal love of a mother for her child. Normalcy, far from being dense and unalterable—monolithic—is shown to be a tapestry of threads of norms, and more importantly, threads of different senses of normal: one is never simply normal, but always normal with regard to certain traits, or sets of behaviours, or appearance, or lifestyle or something else entirely. As she shows, however much her life might have changed around Sesha, the quotidien normalcy of her love for her child grounded all else. She localised the sense of the normal through which she lived.

Yet such a position does pose a challenge to some norms, and as such is difficult to sustain, not least because any given subject does not and cannot exist in a vacuum:

“Yet even as my spouse and I rejected the social imposition of what a normal family was like, we didn’t entirely reject normality. In wanting a child, we desired a family and we never could nor would we want to entirely reinvent the concept. Families exist within a habitus [very loosely understood as cultural context]. Such a habitus gives rise to expectations that need to be met if confirmation and approval by and inclusion into the community are sought. There are expectations of parents and parenting that are inescapable and not undesirable. For example, that a parent tries to do the best for her child is part of the norm…When parents of a disabled child insist on the normalcy of their special position as parents, they affirm the desirability of normalcy.” p.102

“That is what my spouse and I did as a family. We created our own sense of normality. We found those friends who accepted our family as a family. We worked through the larger familial discomfort with our child and our situation. We figured out what was normal for our daughter, in terms of her health, well-being, and development. We learned to appreciate the small steps in development she did make. We refused the pity of those who could not understand, and we refused the attempts of others to sanctify us, to call us ‘remarkable’ or ‘saintly,’ insisting instead that we were only doing what we assumed parents normally would do—care for, love, protect, and foster the growth of their child. We tried to extend the sense of normality to our other child, and he likewise found his way to normalizing his family by his choice of friends, his understanding of his role in the family, and his understanding of what a sister can be.” P. 104

“The new norms are generated out of a newly constituted habitus—one that emerges under changed conditions of existence and through the formation of a different community. The new community is not distinct from the old, and nor are its conditions of existence entirely different. There are continuities and discontinuities. Again, the analogy with language is useful. A language will be modified as conditions of existence alter and as the community of speakers changes. It need not become a new language, but novel words, unfamiliar meanings, and different grammatical forms are generated. Values and norms are subject to these sorts of alterations as well and while we cannot have a private language we can have many dialects and variations on an established language. Furthermore, new dialects can, although they do not necessarily, reform the dominant language. What was first comprehensible only to a few becomes recognizable and intelligible to many. Similarly, what is normal for a few only can challenge dominant conceptions of what is viewed as normal for the larger group. The new understandings can open a space for political change, for challenges and struggles over the meaning of normal.” p. 102-3

“But they will be successful only if there is enough of a community that can recognise the new normal as normal.” P. 104

By localising their particular sense of the normal, then, through a community which would affirm their ‘dialect,’ the Kittays managed a family life of sustained resistance to the norm. Changes can and are made to the norm, then, but these require confirmation by others if they are not to be understood as merely bizarre, or possibly deranged (and pathological). And this is not something that is easy to stand against:

“Our sense of normality falls apart when we view our child through the stranger’s gaze—if only for a moment—and it needs to be recovered. It is worth noting what exactly falls apart at these times. What falls apart is the vision of your child as the individual he or she is and not as just someone with the impairment he or she has. What falls apart is seeing yourself first as a parent and not first as a parent of a disabled child. It is holding on to the connection you have with this singular person and not allowing the hateful attitudes of others to stand between you and the love you have for your child.” p.104

These kinds of small alterations maintain much of our sense of the familiar—for here, after all, is a family with a mummy, a daddy and a baby who love each other very much—and this family retains much of their respectability, acceptability and authority. Grounded upon the normal, they take their almost-but-not-quite-paradoxical stand against normalcy.

Yet for all that my post-structuralist heart warms to the description she offers, I cannot help but feel a small prick of unease. I think this arises because in the end, this model of social change makes the acceptability of difference (marked as abnormal) completely dependent upon (some form of) the normal, as it already exists. And as such, it precisely affirms the normal and thus implicitly the abnormal (as a legitimised category for what might otherwise be difference). Some might, for example, want to ask questions about the selflessness of the love the Kittays live. Not only this, but the affirmation of the normal also involves its binary opposite: the abnormal, legitimised as a category for what might otherwise have been (‘merely’) different. This might mean that rather than reconfiguring the ways that we can think difference (ie, perhaps as something other than abnormal), this kind of model merely replicates it. This is fine for Sesha, whose family is normal enough and willing to contain the threat of her difference. But what about those whose family is not? Or those whose difference is radical enough that it troubles everyone, countering any attempt at love or familiarity; those whose language is foreign to my own, not merely a dialect? How ethical is it to only be open to those who don’t trouble our own normalcy? In the end, perhaps the challenge operates too much within existing structure, altering content but not form: including more kinds of people in the community thus conceived does not make that community less exclusive, but merely exclusive of fewer people.