Knitting in the Dark

Susan Dale with Andy and Sarah

Super-hero or tragic

• The people I work with often express a strong sense that the world responds with medical and cultural descriptions of visual impairment and sight loss

• We are often seen as ‘tragic’ to be pitied or patronized, or that we are some kind of ‘super-hero’ valiantly battling through life with a trusty guide-dog or white cane.

Terms and conditions

• Blind

• Visually impaired• Partially sighted

• Suffering from sight Loss

• Visually disabled

• Only 5% of those registered blind have no vision at all

•Each person is unique in their ‘difference of vision’ and how this affects them

• Our aim is to give voice to people who ‘live with’ rather than ‘treat others with’ sight loss

• To explore how the telling of stories in counselling and research settings enables people to re-connect with strengths and abilities that ‘enable’ rather than ‘disable’.

Stories as enabling practices

Telling stories which make us stronger

• Andy and Sarah have commented that it is important to tell their stories to audiences in ways which move them from the position of ‘being invisible’ to ‘having a voice which is listened to’

• This enables them to feel connected with positions of strength, rather than when they are ‘talked about’ by experts which leaves them feeling disabled and powerless.

• We invite you now to listen to excerpts from our ‘performance narratives’. The words you are about to hear are Sarah and Andy’s own performed by actors.

Audio 1

SarahI’m 58 quite assertive normallyI can’t believe how the hospital told meCan’t believe it. Even sitting here telling youI think that I must have imagined it.‘She’s got MD’ he said to the student.‘There is no hope of recovery the retina is

damaged beyond repair’Still they didn’t talk to me.I blink slowly.‘what does this mean for me’ I ask‘We’ll make an appointment to get you registered’ he said

‘you don’t have to worry about it’.

What! Me! Worry!Then I was out in the street.Should I drive home?Did I really hear what they said?If I couldn’t drive….I started shaking then.Uncontrollably…..I didn’t know where the bus went from.

AndyI use a white stickI need it to feel my way through the streetsLike some kind of broken insectCreeping round the groundTapping, poking, scratching, tasting.I need it, yet hate it.How I hate it.It represents everything I hate and despiseI have fantasises of smashing it, breaking ithacking it into a hundred pieces and then burning it.Burning it – seeing the flames lick it into dust.Then scattering the ash to the wind.

• Neither Andy or Sarah are here today, but they have given permission for me to share with you from their stories.

• When I asked them what they wanted me to say to you, they both said: ‘ask them to listen to our stories without judging us, all we want is to be heard’ (Sarah) . ‘I hope that as you decide how to set up services you will listen to the voices of people like us and not just assume you know what we want (Andy)

Audio 2I sometimes wonder whether things were really the way I thought they were. I used to have such a strong sense of belonging in the village. I would go to the shops, speak with my friends, feeling part of the community. Connected to people. Now, I feel lost and lonely. I can no longer see peoples faces, the angels in my vision have clearer features than the grey faced people that I am left with. I speak with you and out of the corner of my eye I glimpse colour, movement, a hand. Your face has faded, like a nightmare where an artist has drawn crowds of people and then rubbed out their features. How do I connect with you now? I hadn’t realised how much I looked into others eyes and met with them. Now I am just one of the grey ones. I look into the mirror – nothing just a fading out. Like my life really. Just fading out, ending, useless. Did I ever think I knew about life and who I was. I knew nothing. Nothing.I sit for hours just sittingThinking nothing.What else is there to doI can’t sew, I can’t read – I close my eyes and try to recall the words on the

pages of Tolkein. Seeing them clearly in my mind gives me comfort.Sitting with my eyes closed I can daydream, see colour and facesI open my eyes and the world fades backwardsThe dream world is preferable to this

So alone. That is my experience of blindness. So alone.So not knowing.Sometimes being alone.Knowing it will always be like this..I want to die.Don’t want to go on.Living isn’t something I do at the moment, this is just survival stuff.The aloneness.Set apart – just a thing. Sexless. Knowingless.My body constantly tenses against the emptiness. awaiting I know not what.

Set apart unless someone chooses to approach me,then there is no warning.I don’t see them coming – or going for that matter!I get no choices about who I talk to. My body constantly tenses against the emptiness, awaiting I know not what.

For me to know intimacy now there has to be touch.If I touch your hand I suddenly see – your face, your heart, your meanings, or try to.You understand I think. Your hand pulses with life. I have met you, your hand is a window, A moment of meeting.

Using audio texts to perform narratives

• Visually impaired people often live in a world where text is not an option

• Using audio therapeutic documents is part of my normal counselling practice.

• Andy and Sarah kept audio journals during our counselling sessions, I kept a written journal.

• Most research in the field of visual impairment comes from medical understandings which place much emphasis on treatment, diagnosis and rehabilitation.

• Our original aim was to produce a text multi- layered narrative to enable sighted people to glimpse something of our lived experience which could influence the practice of social and medical practitioners.

• I compiled poetic narratives (in text) from the audio material the stories standing alongside each other across the landscape of the page.

Knitting in the Dark

I’m 58 quite assertive normallyI can’t believe how the hospital told meCan’t believe it. Even sitting in your counselling room telling youI thought that I must have imagined it.

‘She’s got AMD’ he said to the student.‘There is no hope of recovery the retina is damaged beyond repair’Still they didn’t talk to me.

I blinked slowly.‘what does this mean for me?’ I ask‘We’ll make an appointment to get you registered’ he said‘you don’t have to worry about it’

What! Me! Worry!Then I was out in the street.Should I drive home?Did I really hear what they said?If I couldn’t drive….I started shaking then.Uncontrollably.I didn’t know where the bus went from.

November 2005‘It must be bloody terrible. I don't think that I could ever cope with it. I just couldn't go on living if it were me’ This was my taxi drivers thought for the day as we crawled through traffic towards my visit to a client at home. The driver is someone I travel with regularly, and regularly transports other visually impaired colleagues and members of RNIB. I am curious (although I didn't challenge him at the time) by his implication that sight loss was a tragedy. Certainly I don't consider it a tragedy, being born with a visual impairment which leaves me with tunnel vision it is just part of who I am as a person. I’m not suggesting that at times this hasn’t been frustrating, especially when I am entirely dependent on public transport—but having no peripheral vision has also enabled me to focus on one thing at a time, develop seeing through hearing, listening, and intuition possibly good attributes for a counsellor! I wonder about the different stories that I am hearing about sight loss and how prominent ‘tragedy’ and ‘medical’ stories are, and how little is told about peoples personal experience.

I use a white stickI need it to feel my way through the streetsLike some kind of broken insectCreeping round the groundTapping, poking, scratching, tasting.

I need it, yet hate it.How I hate it.

It represents everything I hate and despiseI have fantasises of smashing it, breaking ithacking it into a hundred pieces and then burning it.

Burning it – seeing the flames lick it into dust.Then scattering the ash to the wind.

Sarah Sue Andy

AMD age-related macular degeneration is a degenerative condition of the macular and the most common cause of vision loss in those over 60 (RNIB 2006:1)

What is therapeutic?

• The text was re-recorded into a performance narrative

• Performing the narratives to an audience was very important to both Andy and Sarah in feeling that their voices would be heard.

• Both Andy and Sarah concluded that ‘counselling was helpful’ and had therapeutic properties but concluded that it was the collaborative voicing of their stories which had the greatest influence in how they described their lives.

• Audio 3

Audio 3 SarahHello Sue,Listening back to the tape I realise that saying these things, being listened to by someone who didn't judge me or try to ‘jolly me up’ has changed things. I’m not sure if I taped it again it would be thesame. Listening to your and Andy’s account and thinking of them standing side by side felt likeholding hands. Connecting with human beings whose experiences were different, but the same. I feelstronger. I still don’t think that I accept the sight loss as being ok. It isn’t. It will never be. I don't forget the pain of the friends that weren’t , that melted away when the going got tough, nor the churchwho treated me like someone who needed to be pitied and treated with ‘kid gloves’.I am learning to get about, to use a computer—this is my first try at email !! I have started to go outand made a few friends. It’s strange, I don’t see the angels so much now. Occasionally when I firstwake they are there, but they feel different, less judgmental. The last year has been like trying to knit in the dark. So difficult and muddly, but the garment emergingis worth it! Yes I am fine about you using this story, I hope that it will give those who haven't experienced sightloss some kind of clue as to what it was like for me, and judging by others I have spoken to my story isnot that different from many others. I got so much out of our counselling sessions, and probably justas much out of working on this paper with you.Meeting with you and A was such a special moment—It feels finally I am doing/saying somethingwhich might make a difference.

Audio 3 AndyHi Sue, As I hear all these things that I have written (knowing that they were truths told in response to your listening and my connection with you) another view comes into my hearing. Paradoxically an opposite stance, it is faint, yet as I say the words and they rest with you they become louder, and how it is for me.I now see differentlytouch is very importantmy world is now a tactile worldI feel my way across townI notice things which were before absentI smell the rain on new grass,feel it against my face,the orange blossom tree thirty steps to the left of the fourth drive after Maple street.I feel the hands of my partnerthe tiredness in her voiceWorking 40 hours a week and relying on my vision these were all aspects of life missing.

It does not matter whether I am a man or a non-beingwhen I feel I become meand me exists and can commune with you.My aloneness is around me stillLiving in a different universe from you.An alien, alienated by your (by your I mean the world at large) reliance on the etiquette of the sighted.Your alienation gives me time,gives me space for connecting spiritually to the whole of the rest of the universeeven if you are not aware of it or my existenceI define myself as a ‘feeler’someone who feels their way around and who feelsanger, rage, sadness, joy.Feeling is being.‘I am’ because I feel.

Double listening

• Giving space and respect to stories of pain and despair and ‘how it is for us’, has enabled Andy and Sarah to move beyond being defined by these stories to finding new better descriptions of their life experiences.

• It is not just the double listening to the individuals stories that is needed however, we hope that by sharing these stories with wider audiences that we can provide an alternative story which can stand alongside expert medical descriptions of sight loss and visual impairment and can hope to influence the practices of those setting up services to support those affected by sight loss and visual impairment.

Every story I listen to changes the stories I tell of my life.

• I have recognised that I have always lived as a sighted person without the sight, and been blind to the stories which connect me to others with different sight

• Working with Andy and Sarah and others I am able to see my own relationships with sight loss and visual impairment more clearly

• I accept the pain of having to adhere as Andy pointed out to ‘the etiquette of the sighted’ and feel anger with him. I knit in the dark with Sarah and experience the ‘muddly’ beautiful garment which emerges.

Audio 4• April 2006• The narrative therapy practice of using therapeutic documents has taken a

new turn today. In the past I often asked people to write journals and/or written to them between sessions, today I had suggested to a client that she keep an audio journal and she played part of it to me today. It was fascinating how by listening to the original story (which she had recorded) she was then changing and enriching the story as she talked to me. She was reconnecting with her skills as a writer (she had in the past written both poetry and short stories). I asked her ‘does this ‘telling on tape’ change how ‘depression’ holds on to you? She replied ‘it can’t touch me when I write, and I can write even though it is in a different way. She had called her original story ‘when the angels came’ and now she had found a preferred alternative story of ‘knitting in the dark’ but that knitting in the dark was ok. It was a bit ‘messy’ and ‘complicated’ but that the ‘multi-coloured garment’ produced was worth it.

• I’ve been thinking about my sight too. I realise that I have been effectively living as a ‘sighted person’ without the sight. For the first time ever I asked college to provide me with documents in LARGE PRINT their response was positive. I felt like crying.

Casting Off‘Time to stop knittingto cast offto finish this multi-coloured garmentand wear it.to move onwards, and outwards.Sailing into the wind.Feeling the spray on our faces,the breath of others speaking, shouting our names’. (Sarah June 2007)

• We would love to hear what (if any) impression these stories had on your own life and stories, and would be interested in sharing more of our work with you.

• Do contact us on susan.dale@rnib.org.uk or sd2510@bristol.ac.uk