I’ve been revisiting this powerful essay by Jim Sinclair recently. It was really important to me as a newly diagnosed teenager, and hugely influential in shaping the views that informed my autism-related advocacy. I don’t see it quoted a great deal these days, which could be an oversight on my part, but as this is the case I thought I’d share it here along with my thoughts about why I feel it’s important for us as autistic and autism communities.
I’m just going to focus on a small section here (you can read the full piece in Larry Arnold’s “Autonomy” journal – here). But the part I want to focus on is this:
Autism is not an appendage
Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,
I wish my child did not have autism,
What they’re really saying is,
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
I think these words are incredibly important for our autism/autistic communities. There is much evidence that these communities are fractured – both within and between themselves – and probably (possibly?) the single word at the root of so much of this fracture is the word “cure”.
Often the disagreement is framed along the lines of an autistic adult voicing their rejection of suggestions of “cure” for their autism, and the parent of an autistic child replying in the terms represented so clearly in this quote from an autism parent in John J Pitney Jr’s book “The Politics of Autism: Navigating the Contested Spectrum”, which says:
“Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognise.” (p12 – ouch!)
The reason why I like Sinclair’s perspective though, is because I think it sets out clearly why this parent’s perspective is problematic, and indeed the fallacy of the notion of “cure” in relation to autism – that it’s not a question of whether or not we should submit ourselves to “cure”, but just that it isn’t possible.
Certainly in my own case, my particular genetic mutation (deletion) is replicated in every single cell in my body. Further, as someone who was clearly “born this way” there hasn’t been a day of my life that hasn’t been experienced as an autistic person. There is no “me” that isn’t also “autism” the boundaries of those two concepts are coterminous. There are certainly times when those autistic experiences have hurt more, or conversely have brought me particular joy, but that is a function of the interaction between “autistic me” and the world around me, it’s not about me being more or less autistic.
Therefore – as Sinclair points out – you cannot cure “me” of my “autism” because if you remove the autism, the “me” doesn’t exist anymore (I don’t particularly like that as an aim).
Now, it could easily be (and often is) argued that it’s fine for me, with verbal and intellectual privileges, to argue in such terms, but I’d like to challenge that argument by suggesting that what I think Sinclair’s perspective does is to emphasise the impossibility of the term “cure” – not just argue against it, but say that it is actually an impossibility.
You can’t cure an autistic person and still maintain that person (whether or not you feel that you SHOULD – for the record, I don’t).
What this DOESN’T mean of course, is that one should do nothing to improve the lives of autistic people. This must be the focus of our autistic/autism communities, and there is certainly much work to do.
In saying that my autism is so fundamental to my identity, I am not claiming that it is an “easy ride”, that I always embrace it or that I don’t feel the need for changes to make my autistic life easier. For myself, I argue that the changes that are needed are structural – and are to do with the challenging of stigma, of oppression and of the ways in which our (neoliberal) society crushes those who are “different” and in any way “other”. That’s why much of my advocacy focus is political and concerned with autism as identity. For others though (such as autistic people with associated learning disabilities, with epilepsy, who struggle to regulate their own sensory and emotional experiences to extents that lead them to hurt themselves severely), the changes they need to make their lives more comfortable are likely to be very different – and may well involve the use of medical intervention/medication (not that medication is exclusively a possibility for this group of autistic people – it has often helped me to keep functioning in the neurotypical world and to keep myself safe and healthy. I’ve also had different types of therapy, at least 5 times that I can remember and with varying degrees of coercion – though it has never “cured” my autism).
I think from this, we might begin to see that actually there could be, while maybe not universal agreement, at least common ground between the autistic and autism communities – and that there is the possibility that we can further explore and explicate this if we lose the rhetoric of “cure” (which, as I suggest Sinclair has shown and I have supported based on my own experience, is an impossibility) and start to think, to discuss and to advocate in terms of “making the lives of autistic people more comfortable”.
To those of us who are autistic, the language of “cure” is the language of erasure and eradication. It is threatening and it denies our innate humanity and right to exist. It’s hardly surprising that we fight against this.
Maybe if we could lose the language of “cure” and “intervention” and begin to think more in terms of “rights” (to live free from pain, from stigma, from extreme anxiety – whatever the autistic individual in question needs to make their life more comfortable), and accepting that the ways in which these rights are secured are likely to be multiple and diverse in our pluralistic autistic community, we might be able to at least talk to each other – as autistic people and as autism advocacy communities.
I don’t claim that this is going to change the world overnight for us – but it may be a start.
Thinking about this, and I feel like I need to add to what I’ve just written. I’m worried it sounds like I’m arguing that the ONLY problem we experience in relation to “cure” is the language – and I need to say that that’s not the case.
People do HORRIBLE things to autistic people in the name of “cure” -MMS (bleach – oral or enema), ECT, abusive “therapies” involving hitting and forcing a child’s mother to tell them they don’t love them – and lots of other things. Practically a new one every day.
I hope it’s clear (but want to emphasise), that I am NOT saying that the ONLY thing wrong in relation to these “cures” is the language used to describe them. These things are abusive. They are painful and often they are criminal (or if they are not, they should be). These are things that all of us as autistic and autism communities need to be fighting against – in a united way.
I don’t pretend that simply removing the language of “cure” from these abuses makes them in any way acceptable. I do wonder though – if we as communities lost the rhetoric of “cure”, whether this might challenge the “end justifies the means” quality that makes some of these abuses seem acceptable, and actually call them out for what they are.
Anyway, whatever the rhetoric of “cure” and what we do with it – abuse by any other name is still … abusive. Losing the pretence of “cure” behind which it often hides doesn’t make it somehow acceptable – it just shows it for what it is: abuse.