image: book cover Putain de silence – Philippe & Stéphane Vigand

The Price of Augmentative Communication Devices

James Rakoczi

In 2004, Don Mauricio – a Spanish citizen living with a condition known as locked-in syndrome – lost an appeal to the Tribunal Supremo Sala de lo Civil to reverse two 1990s judgements that had removed his legal right ‘to govern his person and property’. Mauricio failed to convince the judges of a capacity to administer his estate and was ordered to pay all costs of the appeal.

Locked-in syndrome, or LIS, is a condition formulated by neuro-clinicians in the 1960s to designate explicitly those who live with near-total bodily immobility and retain cognitive capacity. The definition was constructed to mitigate clinical and legal negligence. Because LIS patients have such little movement, they risk being misdiagnosed as comatose or cognitively impaired. It remains common for family and friends, rather than professional caregivers, to notice that small movements are not reflexes but attempts to communicate.

Mauricio’s disavowal contrasts with the 2006 Spanish Supreme Court case of Jose Carballo, whose experiences of LIS are detailed in his memoir El sindrome de cautiverio en zapatillas (2005). It has been suggested that the difference between Mauricio and Jose lay in the kinds of communications technologies they had access to. Mauricio relied on a system of blinking and alphabet boards, requiring the mediation of caregivers to “spell out” his meaning. The Court decreed that this ‘form of communication’ is ‘not produced at his request but by third parties’. Jose, however, showcased the various computational devices that allowed him access to word processing and internet software. The judges were particularly impressed by his ability to manage, without help, his banking online. They re-conferred his status as full legal persona.

From reading testimonies by people with LIS, I have learnt how bodily movement is bound up with many ableist presumptions about capacity, consciousness, and communication. When confronted with the disparity of Jose and Mauricio’s cases, I want therefore to ask: in what ways can LIS memoirs undermine the legal discrimination of those without movement? Further, what can LIS memoirs tell us about the role of technology in enabling such disenfranchisements?

The legal system’s insistence that Mauricio and Jose elucidate their communication techniques parallels how LIS life-writing texts are read predominantly through their compositional methods. It is true that eye-tracking technology, alternative/augmentative communication (AAC) devices, digital interfaces, and alphabet boards abound in these memoirs. But, against a cultural tendency to gawp either at the ‘painstaking’ slowness or technological ‘innovation’ entailed by the craft of LIS memoirs, they should instead be considered instead as texts which fold into themselves. The scene of description – its mechanisms, embodiments, labours – is itself described.

Philippe and Stéphane Vigand’s punchily-titled memoir of Philippe’s LIS, Putain de silence (1997), translated mawkishly as Only the Eyes Say Yes: A Love Story (1999), highlights this self-reflexive quality. Philippe had lived with LIS since 1990, acting as treasurer of ALIS. He passed away in late 2020. The memoir reveals how AAC technologies are prohibitively expensive. It is through ‘family connections’ that Philippe is offered access to an innovative ‘EyeGaze’ device that allows him to communicate (30). Stéphane describes the Association des Paralyses de France’s President wry comment that only ‘the rich can afford to be quadriplegic’.

More discreetly, Philippe acknowledges this technology’s intersections with human labour. His descriptions of how his eye-tracking technology works weaves with an account of its origin in military-industrial research. He humanises a tech device by naming it “James” and notes how his ‘readaptation’ is down to paid carers ‘who allow me to reintegrate myself into a nearly normal existence.’ This, he adds ambiguously, ‘is saying a lot’.

LIS life-writing, despite or even because of such self-selecting biases, discloses that what we witness in the display of communication aids is not the production of independence but the displacement of interdependence. The hard work of disabled persons as they adjust to their devices, the labour of unpaid/underpaid care-workers, or the violent supply-chains that undergird technological innovation, are intimated in the self-attentive descriptions of those who testify to the experience of living with immobility.

In the Spanish courts, technology conspired to legitimate a legal fiction of able-bodiedness as a state of being that rejects our reliance upon others. Significantly, this had to be done through a display of effortlessness. Mauricio’s method of communication required too much from those around him: he and his carers worked too hard. As if it were a Turing test, what legally counted for more was not the evidence but the self-evidence of cognitive capacity.

As any writer will tell you, effortlessness take effort. The central conceit of the Vigands’ memoir is that Philippe produces its first half, which from the book’s central binding faces Stéphane’s account of the same events. This exemplifies the enfolding quality I suggested characterises LIS life-writing: everything is told twice.

However, there is one event that Philippe does not tell. Stéphane confesses her frustration with a computer that her husband was ‘perfectly satisfied’ with. It lacked writing software ‘capable of scrolling backward, cutting, pasting,’ and so she insisted he upgrade it. The new device ‘imploded’ and Philippe was left ‘unable to communicate except via the old eye-blink code’. I think he forgave me, adds Stéphane, because ‘once repaired,’ it ‘enabled him to write this book!’ The production of Philippe’s laconic, lucid prose is thrown into sharp relief by this co-compositional revelation. The price he paid for the technology to write his book was two months of silence.

His silence on that price is, in turn, instructive. Let’s call it technological friction: a (dis)articulation of all that must be disavowed in the hi-tech comprising of full legal personas. Rather than recognise only the unaccomplished—that the writer has failed to communicate or been failed by technology—it invites us to think through the “what else”of representing technological failure, to the networks of work, care, and suffering that lie beneath fantasies of technological seamlessness.

Suggested Further Reading.

  1. Fernando Domínguez Rubio and Javier Lezaun, ‘Technology, legal knowledge and citizenship: on the care of locked-in syndrome patients’, in The Politics of Knowedge, eds. Patrick Baert and Rubio (New York: Routledge, 2012), 58-78.
  2. Jerome B. Posner, Fred Plum, and others, Plum and Posner’s Diagnosis of Stupor and Coma, 4th edn, (Oxford & New York: Oxford University Press, 2007)
  3. Alison Kafer, “The Cyborg and the Crip: Critical Encounters”, in Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 103-128.
  4. Philippe and Stéphane Vigand, Only the Eyes Say Yes: A Love Story (New York: Arcade Publishing, 1999)
About the author
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James Rakoczi

James Rakoczi is a researcher and writer affiliated with the Centre for the Humanities and Health at King’s College London. In December 2020, he was awarded a doctorate in English Literature and Medical Humanities for a thesis on philosopher Maurice Merleau-Ponty and contemporary literatures of the brain and nervous system. His current book project, The Making of Disorder: Neural Politics and Critical Therapeutics in Contemporary Illness Life Writing, addresses the significance of compositional difficulty in neurological memoir.