sisters (are doing it for themselves)

Hello and thank you to all of those who are following Seaweave. I have now read many of your blogs and what an eclectic bunch you are! I’ve enjoyed exploring the nooks, crannies and margins of the internet with you. Because no blog is an island, over the next little while, I will be responding to your writing, especially those words that have enhanced my own insight. First cab off the rank, an article by Shane Clifton, called Disability and the Dark Side of the Positivity Myth. I got a lot out of these words, thanks mate.

In its application to disability, the positivity myth is an attempt to tame and control the bodies and minds of people whose lives we don’t understand, and so fear. We celebrate only those who are able to transform themselves into our image – our normality – free from their disability.

She chucks a fit, it is loud and aggressive. She throws her heavy bag across the table and pushes the stool around, it makes a high-pitched scraping noise on the polished concrete floor. She is yelling at me and waving her plump tanned arms around. It is because she didn’t get her own way and could not understand how to order food in the Mexican café. She went straight to the front of the queue and was told sharply, by other customers, to move to the back of the line. Two good-looking guys eating their tacos turn to face us, to see what is going on. I am concerned that she may injure me, but don’t attempt to quieten her. Instead, I inflame the situation by announcing what she did wrong. ‘You pushed in,’ I say unsympathetically. If only I could make her understand. Everybody seated in the cafe is now staring. A silent space opens up around our table, I can feel them psychologically recoil from us. My sister slumps down heavily across from me and continues her angry tirade. I crunch nachos into my mouth, but am drawn deeper into the experience through emergent, uneasy feelings. I’m embarrassed and want her to shut up, be quiet, act normal. There is no pretext of order, balance or harmony in this familial situation.

In Western society, most people have a very narrow range of emotional expression. Voice is calm and steady, intonation remains pleasant and restrained. Arms and body do not flail about with either joy or sorrow. Heightened emotions, communicated through bodily movement, noise or sensory expression, are frowned upon in public. This is part of the ‘social taming’ that my sister has unwittingly failed to learn. She is out of control.

At the same time I feel embarrassed by my sister’s raw emotional and physical display, I become aware of my own conditioning. I really just want to be like everyone else and fit in, performing the role that is expected of me. This is a nice restaurant, a hip and groovy eating hole, I don’t want to attract attention, at least not that sort of attention. This flash of insight challenges my strongly held intellectual commitments. In my thinking, I’m not bound by societal conformity and my desire is to upend much of the way things are done around here. But not this way, not with a sister with a disability. At this moment, I’m not one of those ‘self-sacrificing’ and ‘loving’ family members. I’m angry, hateful and ashamed. I just want her to be normal.

Much of what I have come to love and respect about the ‘outlaw whore’ movement is concerned with these very same ideas. Sex worker activists refuse to be controlled and tamed into normality by a society that would condemn them for accepting money for sex, and enjoying the experience. This type of sexual politics says that by using the word whore (and slut, hoe, clit, bitch, cunt) as a designation of pride and power, the role is turned inside out and reclaimed from the system of sexual categorisation, judgement and abuse. It is a powerful stance against what is designated as ‘normal’ for women and I am happy to be associated with this movement for justice. It takes guts to stand against the strongly held cultural values of purity and control in a wider social context.

I don’t feel the same way in this situation at the restaurant. There is no pleasure in challenging what is normal, via unsophisticated emotional behaviour. While my sister may have an immunity to what others think in public, she is also very aware that she is not ‘normal’ as so much has been withheld due to in/ability. Markers of adulthood and rites of passage that most take for granted remain beyond her reach. My sister has grieved this for many years, painfully aware that she is outside of the social system, in lots of ways. If possible, she would choose to be normal, rather than special, to be like everybody else and live within the ‘positivity myth.’ Disability is not a political stance nor an activist position, but rather, a burden, a curse, a monster with a great lurking shadow that has taken so much away and given very little in return. It is in this uncomfortable context of trying to fit in, that my sister makes small and fierce challenges to social convention (and the conditioning in me) and I love her for that.


2 thoughts on “sisters (are doing it for themselves)

  1. The problem (and maybe the brilliance) with the label disability is that it encompasses so many different experiences. Thank you for taking a paragraph from me – in which I had particular experiences in mind when I wrote – and giving it a bigger context and deeper meaning than I could have envisaged.

    May your 2015 be rich, and may you continue to make us all feel a little uncomfortable!

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