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The Sound of SilenceMy Joey Doesn’t Need to Speak to be Heard
Stephen Unwin explores non-verbalism and how societal debates around disability are still too binary
“In the beginning was the Word”, St John asserts boldly, and for centuries we have lived in a culture dominated by the spoken word.
It is hard-wired into education, politics, the arts, and all forms of public life. We’re constantly encouraged to ‘speak up’ for ourselves, for our opinions to be heard, to engage in conversation and dialogue, and such activity is regarded as a minimum requirement for citizenship.
Privileging speech has a long pedigree. Martin Luther despaired of a boy who couldn’t speak and proposed to drown him in the Moldau, while in the early 1800s the French doctor Jean Marc Itard gave up when the feral ‘wild boy’ Victor that he adopted failed to learn to talk. Indeed, classical philosophy, from Plato to John Locke, has consistently claimed speech as the single clearest indicator, not just of rational powers, but membership of the human race itself.
Astonishingly, this exclusionary tendency is still in evidence, as when the much-lauded professor of bioethics, Peter Singer, claims that those with such limited intellectual capacity that they cannot speak can hardly claim moral personhood over and above intelligent non-human animals; or in Richard Dawkins’ evident dislike of the intellectually disabled, to such an extent that he advised a woman whose foetus had Down’s Syndrome to “abort it and try again”, adding that “it would be immoral to bring it into the world if you have the choice”.
Those of us who know Joey well can understand almost everything he’s ‘saying’
Our best guarantee against the abandonment that these mighty intellectuals suggest, is, it seems, the ability to talk: speak up or else! For if “the unexamined life is not worth living”, as Plato’s Socrates declares, what hope for those who either cannot examine their lives or are incapable of expressing it in language? The privileged status of speech still offers an oubliette into which those without it can all too easily be consigned.
So what is it like to be deprived of this fundamental tool and how do we respond to such liminal people, who all too easily slip under the radar and, silent and still, are so easily forgotten?
We Must Change
My second son is one of them. 25-year-old Joey has never spoken a word and never will. There are some suggestions – a faintly sounded “mumee” for ‘mum’ and, comically, “cupofteee” for, well, everyone’s favourite drink – but nothing that we would recognise as speech.
The fact is, Joey has severe learning disabilities and cannot coordinate the muscles in his mouth needed to make words. His passive language skills are much greater. ‘Joey, will you get my glasses from the kitchen?’ I’ll ask, and, in moments, he’ll come back with them in his hand, glowing with pride at what he’s achieved.
Which is not to say that Joey lacks the ability to communicate – indeed, he’s very clear about his immediate needs and, while abstract conversations are impossible, he shares a huge amount through an idiosyncratic use of Makaton signing, body language and eye contact, laughter and smiles. Those of us who know Joey well can understand almost everything he’s ‘saying’. He even prompts us to act as his ventriloquist and the joy he takes in knowing that his experiences are being shared is overwhelming. But speech is beyond him.
There are many reasons for non-verbalism, including brain injury, a stroke, psychological trauma, cerebral palsy, elective mutism and severe learning disabilities. About a quarter of autistic people are non-verbal (or ‘pre-verbal’ as is sometimes preferred) or with very limited speech. Indeed, I was criticised by an autism activist when I wrote in Byline Times last year that Joey “lacked the capacity” for speech: the assumption was that he was refusing to speak, whereas the truth is that, despite self-evidently wanting to communicate, he is incapable of it.
The debates around non-verbalism are complex. There are times when those of us with speech have foolishly offered to be a ‘voice for the voiceless’. The learning disability charity Mencap was much criticised for its strapline of being ‘the voice of learning disabilities’. While the impulse is understandable – noble even – it is better to become amplifiers of the desire to communicate what is already there, rather than speaking over people whose wishes do not manifest themselves in speech. But it’s not always easy.
One of the key developments in disability politics over the past 50 years has been the self-advocacy movement, with its insistence that those with learning disabilities should be given the opportunity to speak for themselves and for their wishes to be heard and acted on. ‘Speak Up!’ is one of its key mantras. How this applies to someone who has no speech is problematic.
One way through, I have discovered, is to recognise that presence itself is a speech act. And so I always insist that Joey attends all meetings about his future: it’s not that I’m expecting him to suddenly start talking, it’s that his very presence articulates the indisputable fact of his existence.
I increasingly think our views of disability are too binary and that instead of imagining a simple distinction between the verbal and the non-verbal, we should recognise the vast range in verbal ability – not just between people, classes, intellectual ability and educational background, but at different stages in the life cycle. Certainly, being with my very old, almost entirely silent, father reminds me that learning disabilities are universal. Even the most articulate stop speaking eventually.
The meritocracy, in its eagerness to dispense with inherited wealth and status, insists that the most capable will rise to the top and reap the rewards of their talent and hard work. But I suspect non-verbal people like Joey offer another perspective.
Above all, they show us how to look and how to listen; how to engage with people who are inarticulate, who lack confidence in speaking up, whose culture or background inhibits or prohibits such self-expression. It is not enough simply to encourage the articulate to speak, for if the ‘social model of disability’ shows us anything it is that we must change and develop new forms of communication, and new kinds of listening. And this, I’d suggest, is essential if our desperately fractured and divided society is to be healed.
I cannot pretend that accepting Joey’s silence has always been easy. When I first discovered that he was unlikely to develop speech, I was appalled. I come from a background where everybody talked easily and at length and had no idea that there was such a thing as being non-verbal. It seemed entirely impossible, and I did not know how I would cope. When Joey was a teenager, I used to dream that I was having conversations with him and I would hear a light tenor voice talking to me sweetly, just like the endless talks I’ve had with my other kids. Slowly, however, I’ve come not just to accept Joey’s silence, but embrace it. Indeed, it has transformed my understanding of the world.
This year, on Joey’s birthday, I tweeted a picture of him by the sea and a simple statement: “Joey is 25 today. He’s never said a word in his life, but has taught me so much more than I’ve ever taught him.” To my amazement, this quickly went viral (trending at #4 on Twitter for a moment), garnering 86,000 likes and almost 3,000 retweets, and was, I gather, doing the same on Facebook and Instagram.
While we all know that Twitter is a snake pit, it did suggest a moment of hope when the fact of non-verbalism was speaking loud and clear to large numbers of people – the vast majority of whom were entirely verbal. Such a paradox showed the way severe learning disabilities act as a kind of ‘alienation effect’, turning our blithe assumptions on their head, and suggested that we should perhaps hesitate before we declare yet again that the ability to speak lies at the heart of what it is to be human.
There is more in heaven and earth than is dreamt of in our philosophy.