In November 2014 I was pleased to give a keynote lecture at the French Autopathographies conference organised by Dr Steven Wilson at Queen's University, Belfast. As well as discussing Thérèse-Adèle Husson's Reflections (1825), and Le scaphandre et le papillon by Jean-Dominique Bauby, I talked briefly about Jacques Semelin’s 2007 autopathography, J’arrive où je suis étranger. Semelin’s account of his gradual acceptance of his own blindness touched me deeply when I read it because it resonated with my own experiences of denial, dissimulation and eventual celebration. To coincide with the publication of his second book about blindness, Je veux croire au soleil (which I review here), I share below some of my thoughts from the Belfast talk.
Unlike Husson, Semelin did not go blind as a child. He grew up completely unaware of his degenerative eye disease which was only discovered during some careers counselling he had in high school. At the age of 16 he was told that his sight would soon start to weaken and that he would go completely blind at an unknown and unspecified point in his life. Semelin is a renowned and well-respected historian and political scientist who is a researcher at the CNRS and a lecturer at Sciences-Po. His successful career might suggest that his story could be interpreted as a typical ‘triumph over tragedy’ narrative about how he battled to overcome his disability to lead a ‘normal’ life. But Semelin’s story is far from being the kind of cloying and self-pitying ‘inspiration porn’ which some non-disabled people enjoy. Instead he offers a practical, humorous and thoughtful account of how he has come to appreciate the kingdom of the blind in which he now finds himself:
Maintentant que j’y ai mes repères, je dirai que ce pays a du charme, qu’il est quelque part envoutânt, que vous pouvez y découvrir de nouvelles Muses.
Semelin’s frank descriptions of his early diagnosis emphasize the dangerous and degrading objectification which is one of the unpleasant effects of the medicalisation of disability:
Jamais je n’avais encore eu la sensation d’être considéré comme un cobaye, une variété exotique d’une espèce pathologique. Désormais c’était fait. En quelques seconds ils m’avaient transformé en une chose clinique.
Unlike Husson and Bauby, Semelin is at first able to hide his disability from those around him. His narrative charts his increasingly unsuccessful attempts to ‘pass’ as non-disabled and his eventual decision to ‘come out’ as partially blind by using a white cane and asking for adjustments to his working environment. Semelin’s desire to ‘pass’ demonstrates the extent to which he has internalised the widespread view that disability is a negative, undesirable state which should be hidden rather than celebrated. As he points out when describing his years of eco-activism:
C’est bien plus tard que j’ai pris conscience de la gêne que mon attitude avait suscitée autour de moi. En fait, j’étais alors engagé dans deux batailles, l’une certes aux côtés des paysans du Larzac, et l’autre contre moi-même, contre celui que je redoutais de devenir et que pourtant j’étais déjà.
Alongside Semelin’s recognition of his ableist desire to deny his own disability, we also find in this quotation a surprising reference to others’ feelings which he seems to prioritise over his own. Semelin’s desire not to embarrass his non-disabled friends betrays a concern for ‘normality’ which sits uneasily alongside his celebration of blindness. In the early stages of his journey, Semelin has a somewhat contradictory or conflicted view of his own disabled subjectivity which reminds us that even the most proudly ‘out’ disabled people sometimes struggle to reconcile their position with the ableist views they are continually exposed to by non-disabled society.For me, one of the most striking things about Semelin’s story is the honesty with which he interrogates his at times knowingly ‘ableist’ perspective. Shortly after he has become officially registered blind he says:
Je ne parvenais pas à me définir comme handicapé. Le mot handicap me mettait mal à l’aise. [...] il me pesait terriblement, comme si on m’avait mis un boulet au pied. D’ailleurs, handicap par rapport à qui ? à quoi ? Chacun n’est-il pas handicapé quelque part ? Il y a simplement des handicaps plus ou moins visibles, plus ou moins « handicapants ». Le mot n’exprime t-il pas avant tout un jugement normatif, pour se mettre à distance de la différence ?
This quotation illustrates the conflict which characterises Semelin’s work. He seems to agree with the negative connotations attached to disability whilst at the same time acknowledging that these connotations are nothing more than constructs of a resolutely normative society.Because Semelin is never completely at peace with his disabled status, his narrative invites us to question are own internalised ableism. And as the book goes on, he does begin to celebrate his blindness for its own sake, as an positive feature which helps him relate to the world in different and perhaps better ways:
La perte de la vue n’est pas une tragédie en soi, elle peut même être une puissante source de renouvellement et d’enrichissement.
Regular readers of this blog will recognise how Semelin's assertion that blindness is not a tragedy echoes my own approach to blindness.