Hung up on difference?

It turns out the idea of ‘difference’ is in the air, and has been for some time – I mean beyond the coinage of terms such as ‘differently abled’, a term which has never felt quite right to me. (Now that I think of it, is that because it paved the way for the intentionally ridiculous ‘vertically challenged’?)

‘Difference’ is no doubt part of the evolving language connected with the disability rights movement, of which I have only been foggily aware until recently.

Though I chose the word ‘different’ to describe myself, now that I am exploring this idea further I am seeing it everywhere. There are memoirs and blogs all over the place on the experience of being different, and of being the parent of a different child. It’s as though the whole area has been cracked wide open.

Jo Case has documented the experience of raising a child with Asperger’s and her discovery that it runs in her family in her blog as well as in her book, Boomer and Me: A memoir of motherhood and Asperger’s. In her presentation Asperger’s Syndrome: Identity or Illness?, she observes ‘… many people who live with an Asperger’s diagnosis – for themselves or their families – experience it as a difference, not a disability.’ She emphasises and convincingly argues that ‘different can be a positive thing’.

She also notes this comment from Tony Attwood, author of The Complete Guide to Asperger’s Syndrome: ‘From my clinical experience I consider that children and adults with Asperger’s Syndrome have a different, not defective, way of thinking’.

Far from the tree coverHer talk introduced me to Andrew Solomon, the author of Far from the Tree, a gargantuan work exploring, through hundreds of interviews, the experiences of a number of families in which parents and their children have significantly different identities. The identities of the children range from being Deaf to having schizophrenia to being the offspring of rape. He calls them ‘horizontal’ identities – identities that are unique to, or begin with, the child – in contrast to ‘vertical’ identities, such as ethnicity or language, which are generally passed down through the parents.

The genesis of Far from the Tree was Solomon’s realisation that the development of his positive identity as a gay man – emerging out of the initial, harrowing, experience of his homosexuality as an ‘illness’ or defect – was mirrored in what he saw in those born deaf, who eventually found a Deaf identify – and that the same pattern was taking shape when a friend (presumably with a ‘normative’ identity) gave birth to a child with dwarfism.

I thought that if gayness, an identity, could grow out of homosexuality, an illness, and deafness, an identity, could grown out of deafness, an illness, and if dwarfism as an identity could emerge from an apparent disability, then there must be many other categories in this awkward interstitial territory. It was a radicalising insight. Having always imagined myself in a fairly slim minority, I suddenly saw that I was in a vast company. Difference unites us. (p. 4)

He argues that while certain ‘vertical’ identities – such as being black, Asian, Jewish or female – may suffer real and serious disadvantages in countries like the United States, there is no expectation that people with these identities/differences should try ‘to become white Christian men if they could’; nor is there an expectation that parents should try to alter the vertical identities of their children through surgery, genetic interventions or counselling.

On the other hand, loving parents often ‘rush to normalise’ children with horizontal identities, or may be pressured to do so by the medical profession, or their religious community, family, etc.

Of course, it’s not hard to understand why parents would focus on reducing the effects of their child’s difference, if they believed this would give him or her the best chance of a happy life. A child’s difference may create huge challenges for them as they progress in their lives. Surgery or other types of ‘correction’ may indeed be justifiable and desirable in many cases.

Solomon’s point, though, is that, from his observations, the challenges may actually be greater for the parents than for the child, who may view their own differences quite neutrally. It is often the parent who must grapple, even before the child does, with the question of how the rest of the world views the child’s difference, and decide how they – as parents, as a family – will respond to it. Often they have to make these decisions before the child is able to express their own wishes, or in situations where the child will never be able to do so.

Solomon is not saying that those with vertical identities never feel pressured to conform – either for themselves or on behalf of their children – to the dominant ideal. He is, rather, trying to make a point that, especially with the availability of gene therapy and ever-more-sophisticated medical technologies, there are explicit discussions going on around eliminating certain kinds of ‘horizontal’ identities which are not happening around ‘vertical’ identities.

Later in the same chapter, Solomon notes that a mere attribute can also be disabling for a person – whether it is poverty or ugliness, or simply extreme age or extreme youth. He says, ‘We are all differently abled from one another, and context – which is socially constructed – often decides what will be protected and indulged.’ And, by extension, what will be attacked or corrected.

Solomon observes that terms such as ‘illness’, ‘syndrome’ or ‘condition’ are often used to ‘disparage a way of being’, while the word ‘identity’ is used ‘to validate that same way of being’. The reality, he suggests, is that many people experience both ‘illness’ and ‘identity’ as part of the same concept of self. He suggests that what we need, aside from a new understanding that accommodates both in a complete view of the self, is ‘a more ecumenical take on healthy’.

Like Jo Case, I’m not necessarily comfortable with the idea of difference-as-illness; and not everyone who sees themselves as ‘different’ will necessarily feel the urge to claim that difference as their identity, either. I certainly don’t. But I do think what difference offers me is a subtly different way of being: often maddening in its challenges, but also often enlightening.

It was the late Stella Young’s ABC Ramp Up blog and TED talk that introduced me to the social model of disability. Within the framework of this model, ‘impairment’ is the term used for the physical consequences of a condition, while ‘disability’ is used to refer to the mis-match between a person’s needs and their physical and social environment – in other words, for a wheelchair user, ‘the presence of stairs’, not to mention the presence of patronising or hostile attitudes. As she put it: ‘We are not wrong for the world we live in, the world we live in is not yet right for us …’

In one of her blogs she conducts an interview with ‘wobbly’ comedian Francesa Martin, who explains why she talks about disability so much on stage: ‘I am proud of who I am so whenever people ask me if I’m going to stop talking about it or move on from it, I think well, when the world stops being so hung up on difference, then I’ll stop it.’

© From the desk of a tiny person 2015