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Treatment

Life

Life, in other words, is being made a condition of nonautism. And while life is always life, the condition of ‘life with’ autism comes to be immediately understood as a life that bears the origin of its own undoing. It is a life under threat and so is no kind of life at all. […] How, in other words, can advocacy live anything other than a (good, neoliberal, and necessarily nonautistic) life of fighting for – and so securing, attaining, recovering – the vital being of nonautism? How, when any alternative to the nonautistic life is so carefully and so thoroughly framed as not life at all?

Anne McGuire

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I interfere because I think you, and people like you, will benefit from hearing the perspective of the receiving end of those therapies and treatments. Because I think you should know red flags of abusive treatments. Because I think that you should be thinking about risks versus benefits, and what kinds of “benefits” are benefits you actually want, and what kinds of risks you’re willing to tolerate for what kinds of benefits.

I don’t want to call all the shots in your parent-child relationship. I want you to listen to those with relevant experiences – to me, to other autistic people, etc – and to think about what you’re doing. I want you to think about the potential consequences, about what’s best for your kid, and what is a true deal-breaker for you.

I want your generation to avoid making the same mistakes with your kids that my parents’ generation made with me. I want you to learn from their mistakes without having to repeat them yourself, and to make the best possible decisions for your kid.

And that’s why I “interfere.”

ischemgeek

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What is problematic in the drive for medical cure is its narrow, simple focus on the gains and benefits that cure may bring, disregarding its associated harms, risks, and disenabling effects.

It also closes off ways to support, in the present, ‘un-treated’ and ‘incurable’ lives, that is, people who have a disability or an illness, as well as people who refuse or cannot afford treatments. When bodies are pronounced ‘incurable,’ they are read as being in a condition of a ‘nonlife’ – without a future and denied meaning in the present. At the same time, cure denies a place for disability and illness as different ways of existing in the present. Cure discourses and imagery operate in political, moral, economic, and emotional realms that go beyond individual medical treatments and personal desires for remedy.

An emphasis on cure as the only path forward is damaging, because it obscures the fact that cure is always a multifaceted negotiation, often enabling and disabling at the same time, and may be accompanied by pain, loss, or death.

For many, cure demands that we suspend our living in the present and instead wait for a future without disabilities and illnesses, urging us to not live in the present.

Alison Kafer calls this temporal framing ‘curative time’:

“In our disabled state, we are not part of the dominant narratives of progress, but once rehabilitated, normalized, and hopefully cured, we play a starring role: the sign of progress, the proof of development, the triumph over the mind or body.”

[…]

Set against the impossibility of inhabiting the present, the promised transformation through cure is enticing enough to make losses and hastened death acceptable, even expected.

Kafer continues,

Within this frame of curative time, then, the only appropriate disabled mind/body is one cured or moving toward cure. Cure, in this context, most obviously signals the elimination of impairment but can also mean normalizing treatments that work to assimilate the disabled mind/body as much as possible.”

The curative drive also demands an approximation of normality through ‘habilitation’ (the acquisition of skills and abilities) and ‘rehabilitation’ (the regaining of skills and abilities that have been lost or impaired).

Eunjung Kim

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