‘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: thus, 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 cannot claim moral personhood over and above intelligent non-human animals, or 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.’
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? Thus, 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? My second son is one of them: Joey (25) 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, eye contact, laughter and smiles. Indeed, those of us who know him 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. And 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 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 speech.
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’ and 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 perhaps 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 last fifty years has been the self-advocacy movement, with its insistence that the learning disabled should be given the opportunity to speak for themselves and for their wishes to be heard and acted on. Indeed, ‘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 expect him to suddenly start talking, it’s that his very presence articulates the indisputable fact of his existence.
Indeed, 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 lifecycle. 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’s not enough just to encourage the articulate to speak, for if the ‘social model of disability’ shows us anything it’s that it’s we who must change and develop new forms of communication, and new kinds of listening. And this, I suggest, is essential if our desperately fractured and divided society is to be healed.
I can’t pretend that accepting Joey’s silence has always been easy. Indeed, 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 I had no idea that there was such a thing as being non-verbal. It seemed impossible, and I had no idea how I would cope. Sometimes at night I used to dream that I was having a conversation with Joey and I would hear a light tenor voice chattering away sweetly, just like the endless conversations I’ve had with my other kids. Slowly, however, and reluctantly, I’ve come not just to accept Joey’s silence, but, ultimately, to embrace it. Indeed it’s transformed my understanding of the world.
This year, on Joey’s birthday, I tweeted a picture of him by the sea with the 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 went viral (trending at #4 for a moment), garnering 86,000 likes and almost 3000 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 how 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.