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Saturday, 9 March 2013

Confessions of a Blind Mother

Last week I did something I'd never dared do before. I took my children to London on my own. This might not seem like a big deal. Other mothers I know are always taking their kids out on days out, to parties, on shopping trips or to the swimming pool. But I have always found being alone with my children in public stressful and difficult. I do not have difficult children. Zac (age 6) is funny and affectionate. He likes to stay close in public and more often than not chooses to hold my hand. Raffy (age 8) is exuberant and full of energy. He is never still and always runs ahead, darting in and out of passers-by and jumping on and off walls. My problem is that I find it impossible to watch them both all the time. Raffy doesn't have to run very far before he is out of my sight and even Zac can vanish from view by taking a few steps backwards or to one side. They always look a little blurry and I can't distinguish them from other children of the same size and shape when they are more than a few metres from me.

As soon as they were old enough to walk I became terrified of losing them. Even the walk to school was frightening as they would run ahead and I'd worry that me not being able to see them meant that something dreadful had already happened to them.
Now that I have started thinking about my blindness in a more positive and proactive way, I have realised that I was approaching motherhood from a sighted perspective, obsessing about keeping my children in sight because that was what the sighted world expected parents to do. After the Madeleine McCann case, which happened when Raffy was 2, I became even more worried that something might happen to my children if I couldn't see them. (Of course I was also particularly interested in this case because Madeleine has coloboma like me.) I used to worry that I was a bad mother because I couldn't always see what my children were doing. But now I know that I am just a different kind of mother.

I have developed other ways of keeping track of them. When we are in crowded or dimly lit areas I get them to help me hold my cane and let them help me swipe it from side to side. We have even created a game where they have to try jumping over the end of the cane without touching it. This keeps them close whilst giving them some freedom. It also makes blindness fun. If I lose sight of Raffy I simply call his name. He has got used to answering and I use this sound either as reassurance or as a way of finding him again.  As he becomes more independent I let him go off on his own (within reason) as long as he tells me where he is going and knows where to find me again. We have both got very good at fixing meeting places and returning to them. This has helped us build a trusting relationship.  Zac has got used to describing things to me and sometimes plays at being my (talking) guide dog. He points out steps, kerbs and stray dustbins and he will always tell me where Raffy is when I ask him. Both boys are great at alerting me to approaching friends and acquaintances. My face blindness means I cannot even recognise good friends in unexpected contexts. But the boys can and they'll say, 'Look, Mum, here's Carolin' just as she stops to say hello.

I have always been open about my blindness with my children and this has helped me be more honest with myself. I wanted them to understand what I can and cannot see, why I do not drive and why it is important that they answer me when I call to them. But mostly I wanted to make sure that my blindness was not a taboo topic of conversation. They must not be ashamed of my blindness or think of it in a negative way. Sure, it is mildly annoying that sometimes we have to undertake laborious trips on public transport which would have been quick and easy in the car, but it is not a tragedy. I think I have done a pretty good job of convincing them that my blindness is not a bad thing. There is no denying that it makes me different from most mums, but it has also shown them that sight is not the only way of navigating the world.

(And as for our trip to London: we had a great time. No one ran off or got lost and we all loved the Churchill War Rooms. I especially liked the audio guide whilst the boys enjoyed the huge interactive displays.)

Thursday, 7 March 2013

Disability and Culture: Whose Tragedy? Workshop

** UPDATE: Audio from this event is now available here **

As part of my research on representations of disability, I am developing an interdisciplinary and collaborative research project called 'Disability and Culture'. The first event in this project is a study day to explore how the 'personal non-tragedy' approach to disability, which I have already discussed here for example, can encourage us to see disability differently. I also wanted to showcase some of the ways in which Modernl Languages is interacting with the discipline of Disability Studies.


Disability and Culture: Whose Tragedy?

Part of Royal Holloway’s Trauma, Fiction, History Series, jointly sponsored by the School of Modern Languages, Literatures and Cultures and the Humanities and Arts Research Centre, Royal Holloway, University of London.

Thursday March 21st, 2013

16 Acton Street
London WC1X 9NG

Programme

11-11:30 Registration and Coffee

11:30-1pm Session One


Whose Disability? Challenging Stereotypical Representations of Epilepsy
Maria Vaccarella (Centre for the Humanities and Health and Comparative Literature Department, King’s College London)

Sur mes lèvres, Deafness, Embodiment: Towards a Film Phenomenology of a Differently Ordered Sensorium
Jenny Chamarette (Queen Mary, University of London)

Beyond the ‘Narrative of Overcoming’: Representations of Disability in Contemporary French Culture.
Sam Haigh (University of Warwick)


1-2pm: Lunch (Provided)

2-3:30:  Session Two

Ana García-Siñeriz, Esas mujeres rubias (2010): disability, gender, and the medical establishment
Abigail Lee Six (Royal Holloway, University of London)

The pain of itching
Naomi Segal (Birkbeck College, London)

‘Raw data’: autistic aloneness and the category of insight in Elle s’appelle Sabine
Vivienne Orchard (University of Southampton)


3:30-4pm: Tea

4-5:30pm Session Three

Telling, not seeing: blindness and travel writing
Charles Forsdick (University of Liverpool)
Read Charles' account of the day here.

On not being deaf to the blind
Kate Tunstall (Worcester College, Oxford)

Disability and Sexuality: the poetry of Denis Sanguin de Saint-Pavin (1595-1670)
Nick Hammond (University of Cambridge)

5:30 Closing Remarks and Plans for Next Stages

Attendance at the study day is free and includes lunch and refreshments. Anyone interested in attending should contact me to register for catering purposes.

The Centre for Creative Collaboration is a neutral collaborative space near King’s Cross. We are using this space to think about the  interdisciplinary and collaborative potential of the Disability and Culture project. This workshop is the first step in a project which we hope will expand into a dialogue not only between academics, but also with artistis, medical professionals, charities, activists and community groups.