Monday, August 22, 2011

The Disability Hierarchy 2: Born this way

People with congenital impairments occupy a strange space in the disability hierarchy. On the one hand, people born with physical impairments have automatic and complete legitimacy and the right kind of disabled children are a very popular image. The Tiny Tims of this world, who are aesthetically cute, intelligent and sweet-natured and who demonstrate – or can be made to seem to demonstrate – uncanny levels of wisdom, gratitude and stoicism, in the light of a miserable existence. They make for great tear-jerking documentaries and feel-good telephons, they put things in perspective for everyone, bless their feeble little hearts.

Lots of disabled children are utterly unacceptable. Some of them are difficult to look at, some of them are impossible to communicate with, some of them behave in extreme and disturbing ways. And one way or another, parents - especially mothers – will be held responsible. The parents of children with many types of learning, intellectual and neurodevelopmental disorders are continually suspected of pathologising or indulging bad behaviour, of being neglectful or overbearing as parents, having fed the children the wrong foods or allowed them to watch too much television, even of faking disorders in their children in order to get benefits. My grandmother was accused of failing to manage her pregnancy properly when she had a child with Down Syndrome in the 1950s, whereas Sarah Palin was criticised (or glorified) for having carried a wanted pregnancy to term in the 2000s. Even the European Courts have recognised the discrimination by association sometimes experienced by parents and carers.

With any luck, children grow up (although it makes a better story if they don't). Unfortunately, even the cutest people with congenital impairments fall a long way down the disability hierarchy when they become adults.

The first problem is the absence of a really tragic narrative. I imagine it is fairly impossible to tell your own life story and describe the events of your own birth, let alone your own conception, as a disaster – very few people wish they had never existed. Certainly, few people I have ever known with congenital impairments see their impairments as tragic at all, even if they would rather be without them - and many would not. If you have never been able to walk or see or hear, then only curiosity and the frustrations of the disabling world are going to make you mourn abilities you never had. Indeed, some deaf signing people described themselves as a linguistic minority and refuse to be called disabled (although I just called them disabled out of spite!).

Often charities and some parents attempt to work round the absence of tragedy, by changing the narrative. Autism has been one area where there is a massive chasm between some charities and autistic activists about what the experience of autism is. Some charities, profiteering quacks and occasionally respected scientists have largely ignored the existence of contented autistic adults, talking of “normal” infant children stolen away by autism or trapped inside the “Shell of Autism”. Whereas all those autistic adults who have been able to express an opinion of the subject – at least that I know of - see their autism as an intrinsic part of who they are. (It's not entirely on topic, but here I must link to Stephanie's excellent post on False Blame, about how the stress of disability is often confused with autism itself - and undoubtedly other conditions too.)

The second problem is the absence of any strong narrative at all. When adults with congenital impairments are featured in the media or in fiction, there is very often a great emphasis on their childhood experiences. In last weeks' Radio Times they interviewed three actors from a reality TV programme called Seven Dwarves. Personally, I think there are loads of questions to ask disabled actors, especially about performing those kinds of roles, but almost the entire piece was dedicated to what it was like to grow up with dwarfism and the rest was about why being short doesn't matter if you're plucky enough.

Many non-disabled people had something to overcome in order to grow up into well-adjusted adults, but non-disabled people don't need to constantly explain their lives in terms of either tragedy or triumph over adversity, so they're allowed to leave it behind. An adult actor may well talk about experiences of a tough childhood, but a relatively unknown actor is unlikely to be asked about that or think to raise it. Gay and non-white British actors are only likely to be asked what it was like growing up different if their childhood might be relevant to a role – and no, they didn't even try to ask the question, “How did growing up short prepare you for the role of a musical forest-dwelling miner harbouring a runaway teenager in exchange for catering and domestic work?”

The third problem is that people who have been disabled for a very long time often lack the demeanour of the good cripple. Not always, but often. Our culture finds comfort in the kind of victim-heroes who are humble, apologetic and grateful for whatever scraps of accommodation and tolerance they can be afforded. The idea of disabled people as charitable causes not only denies us power and controls the level of inconvenience and expense other people have to go to in order to let us in, but it makes non-disabled people feel better. And when you first become disabled and generally experience all manner of blows to your self-esteem, you want to make people feel better. You feel you need to justify your own existence, or else apologise for it and you are fairly amazed, let alone grateful, when people do treat you like a human being again.

The disabled people I know who were disabled as children or young adults tend to be more politicised (as happens to many young people who find themselves marginalised), they tend to be more sensitive (occasionally over-sensitive) to patronisation, tokenism and exclusion. They feel we have a right to be here and to be included. They often lack the humility and fragility of tragic victims, in a culture which conceives and is comforted by narratives in which disability is all about tragedy.

And that's really a we rather than a they, because I was disabled as a teenager. But it was late enough that I do have a nice tragic narrative and there are many ways in which my illness makes people more comfortable about me than they are about most people with congenital impairments. There are other ways in which it does not. As I said already, it's complicated.


stopbeingstupid said...

“How did growing up short prepare you for the role of a musical forest-dwelling miner harbouring a runaway teenager in exchange for catering and domestic work?”
You made me smile.

Excellent post.

GirlWithTheCane said...

Great post!

I linked to it on my blog today, if that's okay. Let me know if it's not:

Sage said...

"tend to be more politicised (as happens to many young people who find themselves marginalised), they tend to be more sensitive (occasionally over-sensitive) to patronisation, tokenism and exclusion"


Vaguely connected: I'm just reading "The Emperor of All Maladies" by Mukherjee about the history of cancer research, and it's striking how heartlessly researchers in the 1950s would write about the "disgusting" children with facial tumors. They got the same medical treatment, but one suspects the bedside comfort wasn't as available to them.

kethry said...

I think there's another hierarchy of disability too, which you've touched on briefly but is worth expanding on: to do with the complexity and rarity of the disability. So for example, non disabled people might feel more comfortable with someone who's deaf or blind, because its a "common" disability, or at least, they'll have come across examples in their lives, e.g. the bible, and while they may not know precisely how to react to them, or how to communicate or whatever with them, it is at least familiar in a way.

Whereas someone with some terribly obscure disease with an unusual name, then the internal reaction will be something along the lines of "oh shit. whaddoidonow?" (the sensible thing of saying "what do you need" never seems to cross their minds for some daft reason).

its all totally wrong, but it vastly amuses me sometimes to watch the thought processes running through people's minds when they discover things such as my deafness... :D (yes, I'm easily amused!)