Categories
Treatment

With

Health is an absence of symptoms.
There is this part of living as a person with a disability.

[…] health is frequently presented as an absence of symptoms. No more soaring mania, no more blood, no more voices  […] So many of us would rather soar and crash like Icarus than crawl the face of the earth like insects. What we crave is the wildness and the depth without the agony and destruction.

Out of context, Sarah K Reece

… I still do hate meltdowns. […] Meltdowns are hard, messy, frightening.

I still want to avoid having meltdowns. […] But I vow to honor and respect my meltdowns.

Meltdowns teach me what is too much for me and what my body can handle. […] Meltdowns teach me how to take care of myself.

Max Sparrow

part of living well as a person with a disability is accepting the body and the brain that you have, and working with it rather than against it.

Because you can’t live in an imaginary body; you can’t live in an abstraction. You have to live your own life, as you actually are. […] You can’t willpower yourself into being someone else.

part of living well as a person with a disability is accepting the body and the brain that you have […]

Even if the therapy helped you. Even if you gained new […] abilities. Even if you learned things from it you wouldn’t have learned without it. […]

You have to live your own life, as you actually are. And sometimes that involves medical treatment, sometimes it involves equipment, sometimes it involved therapy – but always, it involves reality.

Ruti Regan

Categories
Treatment

Functioning

The autistic is perpetually out of sync.
Functioning is not an answer, it is a line of questions.

In Yergeau’s text, the autistic or neuroqueer subject is also perpetually out of sync – developing at a supposedly delayed rate; moving through the world in inscrutable ways; exhibiting a sociality that does not satisfy non-autistics; potentially being already out of time for redemption.

Crucially, being out of step with the idealized tempo situates autistic individuals under the surveillance of parents, physicians, employers, policymakers, and educators, who conceive of autistic bodies as perpetually requiring intervention by allistic others.

Yergeau writes that “regardless of degree, low-functioning and high-functioning bodies are effectually nonfunctioning bodies,” such that “no autistic person is ever high functioning enough, much like no autistic person is ever low-functioning enough.”

Heather Thomas

Functioning means “how well you do”. It is not an answer, it is a line of questions. How well you do what? How well you do when? How well you do in which circumstances, in which environments, with which people? Who decides what well means? Who decides which doing matters and which doesn’t? How do you measure well? Who do you measure against? Why are you measuring at all?

Why do you need to know?

Functioning is not a word. It’s not a sentence. It’s not even a paragraph. Functioning requires a lifetime of context, it requires testing and experimenting, it requires caveats and exceptions and constant amending. Functioning is not something you can capture in a single phrase.

Natasha

Categories
Treatment

State

And the truth is that I had been injured. I had been damaged. […] And I hadn’t wanted to be more autistic.

Most autistic people don’t want to hear [that certain microbial states are causally linked to behaviors characterized as autistic].

Many view it as a threat to the notion of neurodiversity as a phenomenon that has existed with unchanging frequency since the dawn of time […] Others fear it may fuel more abuse against autistic children. […] There is a very real basis for worrying that parents of [autistic] children might badly harm them in misguided attempts to ‘treat’ or ‘cure’ [them].

I imagine that if I had been born with the degree of autism I experience today, I wouldn’t view my newly limited state negatively, because I wouldn’t have experienced a loss.

Twilah Hiari

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It might seem like saying “we’ll do anything to help you” or “we tried everything” would make a kid feel like you really adore them, but this can actually make someone feel horrible. If you’ve always been disabled, disability doesn’t really feel like an emergency, nor does it really feel separable from who you are. So it can just feel, [if someone would be desperate enough to try everything], like you must be sort of a disaster.

Amanda Forest Vivian

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Doctors and researchers seem to think that curing cancer seems to be only a matter of time. My question is how we live in the meantime.

Out of context, Meredith Minister

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Categories
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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