A Review of the Loud Hands Anthology

I’ve been slowly working my way through the Loud Hands anthology, and I have to say, it’s pretty good. Some might be thinking, of course you would say that, your writing is in it! Well I leave it up to others to judge my writing on its own merits or lack of them, what I want to talk about is the other writings in the book.

There are so many good pieces here, I hardly know where to begin. Jim Sinclair’s historical and ground-breaking piece, ‘Don’t Mourn For Us’ (p13),  forms a good intro - written in the early 1990s, yet it’s just as relevant today. Then there’s his other seminal piece, ‘Why I Dislike “Person-First” Language’ (p152), also from the 90s, and also just as relevant.

There’s also Ari Ne-eman’s retrospective on how ASAN got started (p 66), where he states that one of the reasons for its beginning was that “good intentions and love were quite frankly just not enough… When people that you talk about, or set policy on, or conduct research regarding, are not in the room, even good people feel licensed to say horrible things. You cannot help people through pity and fear.” (My emphasis, as it’s something we should never forget, or let others forget.)

Nick Walker’s ‘Throw Away the Master’s Tools; Liberating Ourselves from the Pathology Paradigm’ (p 156), is a little more ‘academic’ or ‘intellectual’, and some may not like it for that reason, but as someone who came out of the feminist and anti-racism movements in the 80s, ‘the master’s tools’ is a phrase that has great resonance for me. It’s basically about how we need to step out of the dominant mentality, in this case the ‘autism as pathology’ mind-set, and create a new frame of reference, and new language, to describe our reality. Language is power, and changing the language is the way to empowering ourselves. I feel it’s a very important piece of writing.

Julia Bascom’s ‘Quiet Hands’ (p 119) is another important piece – even though I’ve read it before on her blog, it still gets me every time. Her ‘This is Why’ (p 134) also moved me to tears, as did Amanda Forest Vivian’s ‘They Hate You. Yes, You” (p 124). They also left me feeling angry and anguished about what’s been done to us, what’s still being done to us, as did Julia’s ‘Grabbers’ (p 137), and Shain Neumeier’s ‘Inhumane Beyond All Reason’, on the terrible things done to autistics and other ‘different’ people at the Judge Rotenberg Center. There’s so much out there that needs changing, and Zoe Gross’s ‘Killing Words’ (p 163), is a potent and chilling reminder of why we need to change things.

The most important thing about this book, however, is not so much the individual pieces, fine as they are, but what the whole book represents. Most autism books I’ve seen or heard of so far are either autobiographies by autistic people, books for parents of autistic children, or ‘self-help’ books for autistic people, often by those who are on the spectrum themselves. There’s nothing wrong with any of these, but I do feel Loud Hands goes a step further than all of them. More obviously ‘political’, It collects and collates important existing advocacy pieces, brings in new ones, and presents a vision of where we are, where we’ve been, and where we are going. It’s a new type of writing ‘about’ autism, one which has been slowly nurtured in blogs and social media groups and forums for quite a few years now, but this is the first time it’s all been put into a book, and published, and put ‘out there’ for all to read, and in doing so, it makes a powerful statement about us.

I believe that this book is our ‘Declaration of Independence’, our Communist Manifesto, our Long March, our October Revolution, our Stonewall Riot, our Our Right to Love, our The Female Eunuch, our ‘burning’ of bras (actually just publicly dumped in a trash can at a protest outside a beauty contest, but the media has never let feminists forget it), our Sisterhood is Powerful, and any other powerful event or book or document of liberation or explosion of collective frustration that you can name, that started some ball rolling, outlined some group or movement or country’s priorities, allowed one oppressed group or nation or another to redefine themselves, and get, or begin to get, their oppressor’s foot off their neck. I believe that some day Jim, Julia, Zoe, Amanda, Nick, Ari, et al, will be seen as our George Washington and Founding Fathers, our Martin Luther King and Malcolm X and Audre Lorde, our Shulamith Firestone and Robin Morgan and Germaine Greer, our Susan B. Anthony and Kate Sheppard and Pankhurst sisters, our Gandhi and Steve Biko, our Harvey Milk and, well, anyone else you can think of that did so much for their people, their brothers and sisters, their race or gender or sexuality or nation.

It’s that important. Read it.

The Tyranny of Normal

In freeing ourselves from our oppression, possibly the biggest force we have to fight is what I call “The Tyranny of Normal”. By this I mean the powerful and largely unquestioned assumption amongst so many professionals and parents of autistics, and even much of the media, that being neurotypical is the superior or ‘healthy’ state, that autistic is inherently a ‘wrong’ or ‘pathological’ state, and hence the very best thing that can happen to us is to be made over into NTs. That nothing is more important or more worthwhile than this, and any ‘treatment’, up to and including harsh physical restraints, abusive punishments, the administering of bleach, electric shocks and even death are preferable to a person being ‘obviously’ autistic. Hand-flapping, lining up toys, flat voices, refusal to make eye contact and hours spent on computers are sins to be eradicated, and ‘indistinguishability from their peers’ is the sacred, shining, holy grail of autism ‘treatment’.

To be free of this tyranny, we have to challenge this assumption. I’ve just been reading, and loving, Nick Walker’s fine article “Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm”[1], in the Loud Hands anthology, which expertly dissects it. He wants to replace the ‘pathology paradigm’ or commonly accepted viewpoint with a ‘neurodiversity paradigm’, where being autistic is simply a ‘different’ state, and autistics become simply another minority group, “no more intrinsically ‘disordered’ than any ethnic minority”[2].

And yes, the ‘low-functioning’ are included in this. (Functioning labels are largely based on the pathology paradigm anyway.) The Tyranny of Normal rules all of us – from the non-verbal child who is held down and has mouthwash forced into his mouth when he stims, to those who ‘just have a few quirks’ that need ‘ironing out’. As Amanda Forest Vivian points out, “when people claim that ‘cure autism now’ and the disease [mentality] and the Judge Rotenberg Center are not about me, well I beg to differ. The only reason they’re not about me is that I’m old and verbal enough to not be vulnerable to that kind of abuse. They would be all too happy to practise it on me if they could. Autistic people do not get abused because they are low-functioning, they get abused because they do weird things.”[3] (My emphasis. This is an important point forgotten by many who seek to separate ‘high’ from ‘low’ functioning.)

At the risk of sounding arrogant, I have to say I can’t accept that being NT is really so superior. NTs lie, cheat, steal, start wars, abuse and oppress, create ‘isms’, perpetuate prejudice and divisions, and generally make their own and other people’s lives hell, in all sorts of small and large ways. We are generally honest, straightforward, high in integrity, lacking in class-consciousness and prejudice, and (to start with anyway) all too trusting, friendly and open. Yes, I know that NTs have many fine qualities too, and nor do I think autistics are all perfect. Far from it. My point is, that both NTs and autistics are human, with both good points and faults, and neither state should be exalted as ‘superior’.

Nor can I accept that being ‘different’ is really such a ‘sin’. Preventing behaviour that’s harmful of oneself, others, property, etc, for instance meltdowns, aggressive behaviour, running away or faecal smearing, that’s one thing[4].  But hand-flapping? Lining up toys? Rocking, humming or spinning? Talking in a monotone, or monologuing about trains (boring as the latter might be)? Loving lampposts, or rocks, or butterflies? Refusing to wear certain fabrics, cutting labels out of clothes, or hating the radio? Being able to list all the Kings and Queens of England since Alfred The Great? Loving Disney tunes – even at 29? What is really so wrong, so harmful, about these things, that they must be eradicated, and all of us turned into blandly boring ‘normal’?? How are these really any different to the guy with a collection of several hundred flags, featured on TV[5] last night? Or the NZ couple who covered their house with paua (abalone) shells? The people who take part in ‘extreme’ sports, or spend their entire lifetimes trying to prove UFOs exist? If ‘abnormal’ behaviour can be accepted in NTs, why not in us? Yet all of the above types of ‘harmless’ behaviour in autistics have seen someone try to destroy, suppress or eradicate them – many times, with extreme harshness. And other people have supported such harshness, precisely because the individual is autistic (and therefore, anything is okay if it promises to ‘get rid’ of the autism, even if it wouldn’t be okay for any other person, because autistics are somehow ‘less than’ human, or the ‘wrong’ sort of human).

I know that talk of ‘neurodiversity’ doesn’t go down well with some autism parents, especially those who are so anxious, and so overwhelmed, that they will listen to any ‘expert’, try any ‘therapy’, if it will stop their kid’s screaming in the supermarket, or teach them to talk, or get them toilet-trained, or prevent them running away, etc, etc[6]. I do know that it can be difficult, and that many parents, especially when their autistic children are young, feel like they’re living in a war zone. I sympathise, hell I even empathise. And (up to a point) I support any treatment that truly helps with such things – but not those that are harsh, punitive, harmful, useless, or done with the end goal of ‘eradicating’ the autism – especially if in doing so, they communicate to the child (or even in front of them, even if they’re non-verbal) that autism itself is ‘bad’.

Why? Because autism is not a set of behaviours, but a profoundly different way of thinking, feeling, looking at the world and reacting to it. It’s a neurological style, and an intrinsic part of us – and can no more be separated from us, than we can stop being the gender or race we are. So anyone communicating that something so central to us is ‘bad’ and ‘wrong’, we invariably assume it means that we are bad and wrong. All manifestations of our autism (even if it’s not diagnosed, doesn’t have a label), become evidence of our ‘inferiority’ or wrongness, things to be hidden away, repressed out of sight. Which can lead to stress illnesses, rock-bottom self-esteem, self-hatred, shame, anxiety, depression, even addiction, self-harming or suicide attempts. Many of us adult autistics are all too familiar with these. The cost of this ‘Tyranny of Normal’ is severe, and can’t be allowed to continue, for all our sakes[7].

We need to challenge this assumption that being neurotypical is so superior a state that it’s worth anything to make us that way. We need to put an end to the sacred status of ‘indistinguishability’. It’s time to overthrow the Tyrant, and assert our right to be free, and to be our true autistic selves.

---

[1] Nick Walker, “Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm”, in Loud Hands – Autistic People, Speaking, ed Julia Bascom/The Autism Self-Advocacy Network, pgs 154-162. Washington DC: The Autistic Press, 2012.

[2] Walker, p 161.

[3] Amanda Forest Vivian, “They Hate You. Yes, You.” In Loud Hands – Autistic People, Speaking, p 127.

[4] Though even here, I am against harsh, ‘normalising’ treatments – surely trying to understand an autistic child, and why they do these things, what triggers them, and work with that, has to ultimately work much better than ‘normalisation therapy’, which merely seeks to suppress ‘symptoms’.

[5] On NZ’s TV1, Seven Sharp, 7pm, Tuesday 19^th February, 2013.

[6] By the way, though I do recognise they can be hard to separate from it, none of these things are actually intrinsic to autism. See my following paragraph, for what autism actually is.

[7] ‘Normalisation’ is also of course often ineffective – many of us, despite our or our families best efforts, remain obviously ‘different’ and ‘other’, and prone to ridicule, bullying, violence and discrimination, even as adults.