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September 22, 2013

Do We Have to Talk (About Cancer)?

We Have to Talk megaphone

One of the many provocative tensions at the heart of Brain Lobel’s Fun With Cancer Patients project is between talking, and not talking. Many visitors to the exhibition comment on how cancer has gone from being a shameful, difficult topic to something we can talk about: ‘When I was growing up you couldn’t talk about it. We used to call it the ‘c’ word. It’s good that there’s so much openness’, says a woman in her forties with a young daughter. This sentiment is expressed by many others who think it is positive that cancer – a difficult subject – is being talked about in the open public space of mac birmingham’s Arena Gallery.

At the We Have to Talk About Cancer workshop last week, we used pictures and sculptures to talk about our understandings of cancer and we learnt a lot from each other in an environment of open exchange.  Afterwards the young people who had facilitated the discussions said that they welcomed the chance to talk about cancer: ‘I like educating people’ said Chelsea, and Will added, ‘I like speaking about what should be spoken about’.

The general consensus seems to be that whilst not always easy, it is good to talk.

But …

What if you don’t want to talk? What if talking does not – cannot – express how you feel? One of the participants, Chris, decided for his ‘action’ to record a series of answers to the questions he always gets asked (What kind of cancer do you have? What happened to your hair? Does having cancer as a teenager affect your love life? What did you struggle with? How did your family deal with your cancer? Does your walking stick have a name? Will you get better?’). For the most part, Chris patiently answers curious enquiries and says, ‘I’d rather people ask than didn’t ask’’, but Dr Sue Gessler points out that it can be a pressure on patients to answer every question and this can be intrusive. She argues that, ‘Just because someone asks something doesn’t mean that they have a right to an answer’.

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This is important for us working in the Research Hub, too. Sometimes visitors take in the exhibition and want to talk. They have comments, further questions, memories and experiences they wish to share. Sometimes they don’t. Sometimes the exhibition makes people quiet. They might come up to the board and write a comment, or draw a picture, or they might take their thoughts and feelings away with them. That does not mean they are not affected by the exhibition and the response is no less ‘valuable’ because it remains unspoken, though it can be hard for us to understand it in a world where talk and text is what counts. But silence is not an absence of response. It is a response.

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So yes, we do have to talk about cancer. And we also have to respect, and try to understand, the silence.

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