X-post from Blueprint Zine
CN: ‘Autism mums’, eugenics, forced sterilisation, functioning labels, disablism
“[It’s] not for the disabled students at Cambridge to condemn the idea of a cure for autism.”
– Judith Newman, To Siri With Love
For the most part, autistic people vocally object to the search for a cure for their condition. While I was Disabled Students’ Officer at Cambridge, I ran an event about this issue, and was recently surprised to hear that author Judith Newman wrote about it in her book, To Siri With Love. She was astounded that Cambridge students would object to the search for an autism cure, and felt that we had no business sticking our Cambridgey noses into the discussion – even though we were all autistic ourselves, and directly affected by the issue.
There have already been a wealth of excellent analyses and criticisms from within the autistic community addressing the most harmful views expressed within To Siri, wherein Newman, for example, outlines her plan to sterilise her autistic son. But I’d like to address a specific moment, where the author questions whose voices we ought to listen to and prioritise when thinking about the ethics of an autism cure. Because, while Newman rather unhelpfully concludes that autistic people’s voices should be discounted if they are educated at Cambridge, I agree that it’s still a very useful question to ask.
When Newman says, ‘it’s not for the disabled students at Cambridge to condemn the idea of a cure for autism’, I don’t think she’s really referring to class privilege – although that no doubt plays a part. Instead, I think she conceives the autism spectrum to be a straight line between clusters of traits that are ‘high-functioning’ and ‘low-functioning’. Cambridge students therefore exemplify in an extreme sense all the characteristics that denote ‘high-functioning’: being able to live independently, having normative access to language, getting accepted into a world-class educational institution.
“The higher functioning Newman perceives you to be, the better quality of life she deems you to have”
Ignoring for a moment the inadequacy of this spectrum, and the fact that this does not by any means accurately portray the varied experiences of autistic Cambridge students, Judith Newman believes that those of us at the ‘high-functioning’ end have no business condemning a cure because our lives are comparatively going pretty well – according to a particular measure. That is, the higher functioning Newman perceives you to be, the better quality of life she deems you to have.
And while functioning levels may be one (however crude) measure of a person’s quality of life, on its own it constitutes a rather inadequate one; it goes out of its way to avoid taking into account autistic people’s own opinions on how their lives are going. When we think about what good an autism cure could bring, we’re pretty much always thinking about it to the exclusion of those who actually have the condition: how much money could be saved; how the family’s quality of life could be improved; how much we think an autistic person’s life could be improved. This paternalism is an especially pressing issue for autistic people who do not have normative access to language, and who cannot always express their views.
Having said what I’ve said, I still think we need to be honest with ourselves – I believe Newman is completely correct when she implies that my experience is totally alien to many other autistic people. I will readily accept that my life experiences differ from others’, and I believe I experience a kind of relative privilege. I accept that the voices of autistic people like myself – a Cambridge graduate – dominate discussions of autistic experience; that ‘autistic’ is often used as short-hand for ‘high-functioning autistic’ within our communities (no matter how much we will nominally reject functioning labels).
We need to do better when we talk about autism. A large part of that is undoubtedly to be critical when neurotypical parents speak for their autistic children – especially when they claim to carry more weight than the lived experience of other autistic people. However, if we are to move towards a productive system of representation, rather than simply waxing lyrical via articles and Twitter threads, then we have to be fairly practical and honest about how this could happen. We need to accept that for many autistic people, their carers will be their parents or another family member; that however uncomfortable we may feel about this, they may well often have the best understanding of the autistic person’s feelings, thoughts, and desires.
“Newman is completely correct when she implies that my experience is totally alien to many other autistic people”
What follows is to regard this sensitively, critically, and contextually. It is not to disregard any autistic person’s views, regardless of what measures might be applied to them to judge their worthiness to participate in the discussion. It is not to accept inadequate and offensive functioning labels as a way of collapsing myriad autistic lived experiences into two inflexible categories. It is not to prioritise neurotypical parents over their autistic children, or over any other autistic person.
So, is it for the disabled students of Cambridge to condemn a cure for autism? Very much so, as much as they would like to, and as much as any other autistic person. But we still need to be honest, and recognise that whenever these discussions happen, our voices seem to be heard and valued that much more.