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Tuesday, 26 April 2016

Skiing Blind Again

Two years ago I went skiing for the first time. As this post shows, I had a great time and returned from Switzerland feeling confident, empowered and rather pleased with myself.

A couple of weeks ago we had another family ski holiday, this time in the very pretty Monterosa resort in the Italian Alps. This week was both much easier and much harder than my first time. For reasons that will become obvious, it wasn't quite the resounding success of my first ski adventure. But I am still glad I went, and I'll certainly go again.

In 2014 I found the whole pre-ski preparation phrase pretty overwhelming. I hated getting ready every morning and came to loath the hot, smelly boot room and the perilous walk out to the slopes juggling skis, poles, helmet, goggles. This time I was prepared for the hassle and handled it better. Luckily, as soon as people saw my 'blind skier' arm bands they were happy to help me carry things and be patient as I clambered clumsily into cable cars. As in 2014, I had booked a private instructor/guide to ski with me each morning and as soon as I met Chris I felt reassured and relaxed. From our first conversation he was open, honest and confident, which meant that I was too. And as I followed him slowly down the gentle nursery slopes, everything Jolanda had taught me came flooding back. I could still ski! Chris was impressed with my balance and control, and I was delighted that I could still do it.

Chris was so pleased with me after our first session that on day 2 he suggested we leave the nursery slopes and head up the mountain. This was something I had never done with Jolanda. I was nervous of course, but mostly excited: it felt amazing to be up so high, on fresh snow, with just distant sounds of other skiers for company. Chris had picked the easiest blue slope in the resort for my first 'proper' descent, but even so I spent quite a lot of that morning remembering what Jolanda had taught me about getting up after a fall. Luckily, the snow was soft and plentiful so falling didn't hurt.

It turns out that being on a nursery slope doesn't really prepare you for steeper slopes. The only way to learn to ski on steep slopes is to practise skiing on steep slopes. This inevitably leads to tumbles but by the end of day 3 I was feeling much more confident about even the steepest parts of the run. And as I got to know the slope better, I was even able to predict what I might need to do next.

Once I left the nursery slopes, it became clear to me that I would not be able to ski without a guide. Not only did I struggle to see the edges of the pistes, I also found it hard to know accurately which way was uphill and which way was downhill. Mountains are not man-made: they curve and bend at odd angles and slopes go up and down in surprisingly unpredictable ways.  

In the afternoons, I really wanted to ski with my family and friends. But they were all (much) better than me by now (although not good enough to guide me). So I reluctantly decided to curb my dare-devil instincts and enjoy some Italian café culture and sunshine whilst they tackled the resort's trickier slopes. This was hard for me, because I don't like to admit defeat, but it also felt good to be making decisions about my safety and confidently explaining my limits to others.

On day 4 the weather changed: it had been much colder than usual overnight and the snow felt brittle and hard under my skis. It sounded different too: when skiers passed me they made a terrifyingly loud rattling noise which made it much harder to hear Chris. I found it more difficult to control my skis on this new, hard snow and needed to quickly learn yet more techniques before reaching the steep bit of the slope.

Sadly I didn't get much chance to practise skiing in these odd conditions. Minutes later I fell and hurt my right knee. Chris called the rescue team who brought a stretcher to take me to the clinic. X-rays revealed a fracture at the top of my tibia.

As I lay in my hotel room with my leg in plaster my disappointment at my curtailed adventure was soon replaced with more worrying thoughts. What if this accident was proof that I should never have been skiing in the first place? What if it showed that blind skiing is a foolhardy, dangerous and irresponsible pastime which is bound to end in tears? I could imagine people discussing my accident: 'Well it serves her right for thinking she can do sighted stuff'; 'This is what happens when blind people try skiing'; 'Look at all the trouble and inconvenience her crazy thrill-seeking has caused.' What if my accident was evidence that there are things that blind people are better off not doing? I couldn't get these doubting, ableist voices out of my head. I was horrified that a little part of me actually believed that I had been wrong to want to learn to ski.

Maybe I was more likely to hurt myself than a fully sighted skier. Maybe not. I know of at least two other people who broke bones on the slopes that day. And the doctors in the clinic told me they see around 600 ski accidents per season. Skiing is a dangerous sport but I was very careful. I always skied with a guide and never tried anything I didn't feel comfortable with. My boys laughed at me for being too slow but I went at a speed that felt right for me.

On the whole I think I agree with blind writer Jacques Lusseyran who urges the parents of blind children to let them take the same risks as their sighted peers. According to him, 'there is a danger far greater than cuts and bruises, scratches and wounds, and that is a blind child's introverted isolation.' Broken legs heal (relatively) quickly and easily. Self-esteem and confidence can take much longer to mend. I am still a little embarrassed that I broke my leg skiing (what a cliché!) but I am proud and glad that I know what skiing feels like and I definitely intend to feel that indescribable rush of adrenaline again.

Wednesday, 13 April 2016

Jacques Semelin

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.