My spirit of resistance

Earlier this year I was asked if I’d like to take part in an intergenerational creative project called Spirit of Resistance which explores the life and legacy of World War Two blind French resistance leader, Jacques Lusseyran. The project marks the tenth anniversary of Extant’s ground breaking play: Resistance.

Spirit of Resistance (photo of booklet)

All the participants met in workshop style gathering for ten weeks. We discussed our understanding of resistance and resilience together with our experiences of visual impairment.  We worked with various media and art forms i.e. recorded interviews, creative writing and, music. The content of the workshops were varied from handling objects from World War 1 and 2 like a helmet and shrapnel provided by the Imperial War museum and writing a group poem. The result was a ‘Spirit of Resistance Sharing event’ which took place on 18th June Stratford Circus Arts Centre.

I was attracted to the project because we would have the opportunity to work with various art forms, and as I am a writer, I thought I’d take the opportunity to use my skill.  At the first workshop, we all talked about our experience of facing life with a visual impairment and what the words ‘resistance’ and ‘resilience’, meant to us. As I looked around the room, I had my usual thoughts when in the company of others with what I thought of as more serious eye conditions or states of vision than myself. I thought ‘I shouldn’t be here’, ‘I can see well enough’. ‘I just have a small problem with my eyes’.  These insecurities emerged over a number of years when my own journey of ‘resilience’ began. I cultivated a steely exterior to deal with the sudden loss of peripheral vision in my right eye, and a subsequent eye operation which left my sight unstable for one year. I thought ‘I should just get on with it. I am lucky not to have lost sight in both eyes!’  However, as the workshops went on, I realised I was very much in the right place and any anxieties soon faded, especially as it was stressed right at the beginning that this was a safe space and we should only share what we felt comfortable with.

During the workshops I was asked to interview some of the older participants about their experience of resistance and resilience. One woman talked about being evacuated from London; and another that of being a prisoner of war in Poland who was moved from camp to camp. They both stressed that their familiarity of resistance gave them the tools to cope with sight loss in later life. Although loss of vision robbed them of the ability to do valuable hobbies and tasks, their struggles in earlier life equipped them with assets that helped them, like me, ‘to just get on with it’! One woman talked about missing embroidery but instead listened to talking books. Another talked about going to her Member of Parliament so she would receive the right injections for her eye condition!  As I interviewed these two women I gained an awareness of my own sight loss journey. Although we were distinct by nationality and age, we developed similar coping strategies.

In my own interview I drew parallels with growing up in a migrant family and coping with life in 1970s London. My family had to deal with not just travelling miles to a new country, but once here, with racism and struggles with employment. We all three discussed how much maternal strength played a part in our lives and gifted us with the durability  we all felt.

All the participants discussed the difficulties that living with sight loss brings from travel, to lack of confidence when talking to people if you cannot see their faces. We all wholeheartedly agreed that being asked meaningless questions in daily life for example:  ‘how much can you see? How long have you been like this? ‘You don’t look blind’ was really frustrating! We all received a mixture of pathos, pity and ridicule from people on the street to friends, and health care professionals. I was therefore very happy when Jules Tipton the facilitator for the project decided to incorporate questions we were asked into the Sharing event.

During the workshops I drew parallels with my experience of loss through death and how much the grieving from this helped with that of sight loss. As someone said ‘loss is just loss no matter what it is and you have to grieve’. This comment reminds me of the Gerard Manley Hopkins poem Spring and Fall where he wrote about the similarity between age and loss, spring being youth and autumn seen as ageing. This is such a beautiful way of writing about loss. I’ve also chosen the medium of poetry to express loss and I read a poem entitled Grief.

At the end of the workshops we discussed how valuable we found the opportunity to share our experiences. Personally, the Spirit of Resistance helped me to rediscover the confidence I’d lost after losing sight; but more importantly I learnt from some of the wonderful people I met that this loss is immense and it takes at courage to even begin to deal with it.


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