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TX: 02.05.03 – NEW ANTHOLOGY OF DISABLED WRITERS AIMS TO COMBAT TABOOS SURROUNDING DEATH
PRESENTER: WINIFRED ROBINSON


ROBINSON
We don't much like discussing death these days, as it's often observed sex and money get us talking, mention death and we tend to clam up and then shift uncomfortably in our seats. A new book from the National Disability Arts Forum called Shelf Life is an anthology of poetry, prose and pictures by people who know they're going to die prematurely. Here are a couple of extracts, the first is Stella Hughes reading her poem My Casket, she has a degenerative spinal injury and the second is the actor Nabil Shaban reading from his foreword to the book.

STELLA HUGHES
I have in my casket many treasures to bring out from time to time - hold, listen, smell, look, taste - before the cold ice time comes.
I have in my casket the touch of your finger upon my lips, the feather light movement of your caress, the depth of your voice.
I bring all out from time to time - hold, listen, smell, look, taste - before the cold ice time comes.
When the casket and I are no more.

NABIL SHABAN
Being born a disabled person and having to spend my childhood in hospitals and institutions of disabled people I probably came to terms with the subject of death at an earlier age than most. By the time I was nine at least three of my friends had died. Childhood accidents that fractured my fragile bones could have taken me to the brink of death. Ten years ago some specialist informed me that my spine was continuing to curve to the side. Until then I wasn't really aware that the ongoing scoliosis was a typical feature of the brittle bone condition and that my internal organs were going to be increasingly constricted and inhibited from functioning effectively. Great! The specialist wasn't helpful about whether any lifesaving remedies were available. I got the impression he didn't consider my life worth the expense of prolonging. Well sod the doctor - sod the lot of 'em. I'll just try to shine even brighter before my flame is extinguished prematurely.

ROBINSON
Well Nabil Shaban is here, you might remember him as the evil Sil in Doctor Who and Kate O'Reilly, who edited the book, is on the line. Kate why produce this book?

KATE O'REILLY
I think it tells a story that hasn't really been told before. There's been many versions of - well opinions on shortened life and so on but it's never actually come from this perspective before, this is the first time when we have disabled people who are experiencing this, writing about this themselves.

ROBINSON
Nabil Shaban I'm told that you've come close to death a couple of times, and you mentioned that in your foreword, how's that affected how you live your life?

NABIL SHABAN
Well I mean first of all it made me realise that my life can be wiped out at any moment, so I try to live each day as if it's the last. Secondly, it has reduced my fear of death because I've come so close to it and actually seen that maybe death isn't as bad as we're led to believe.

ROBINSON
In what sense not as bad?

NABIL SHABAN
Well like the first time was when I consciously remember was when I was drowning and as I was drowning in the swimming pool a great calmness came over me and I felt very philosophical about it and it seemed to me that it was going to be another great adventure rather than the end. Also when I had a very bad car accident, again it felt like this was my last moment and instead of being frightened or panicking I felt that it was actually going to be quite an interesting experience - there was no feeling that my consciousness would cease to exist.

ROBINSON
Kate O'Reilly how would you describe the works in this book as a whole?

NABIL SHABAN
I think they're so varied it's really remarkable. I think because we had the writers responding in what ever way that they wanted the scope is huge. So we have very gentle, reflective reminiscence pieces, some very personal first person testimonies, we have some in your face, rather quite confrontational work but also the journey of the book, if you like, from start right the way through, it ends with something that I think is very inspirational, rather like Nabil was saying, I think it's actually quite fearless, optimistic and forward facing.

ROBINSON
Nabil I mentioned right at the beginning that we don't like to talk about death, do you talk much about your situation, your possible imminent demise with other people that you know?

NABIL SHABAN
I probably talk about it too much.

ROBINSON
Really?

NABIL SHABAN
Most of my friends get bored and say well look if you're going to die, hurry up and die. You've been going on about it for the past 20 years.

ROBINSON
Do you think it's really possible for the rest of us, who don't know when we're going to die, or don't know that we have - might have a shortened lifespan to really live our lives in the knowledge of death these days? Because we're not surrounded, are we, by the evidence of our own mortality in the way you were as a child and in the way previous generations were.

NABIL SHABAN
I think that's absolutely true. I mean we sanitise death so much in the modern Western culture especially. And it's always presented in - when you see it in film and television it's presented in the most dramatic ways and usually the most horrific way - bodies being blown apart etc. So consequently people don't like to talk about it. And also I suppose with the demise of kind of spirituality, religion, a belief in the afterlife, people prefer not to think about it because they're not convinced anymore - especially as science is continually trying to tell us that all we are is just microbes and molecules and once they're disintegrated we cease to exist.

ROBINSON
Kate what kind of reaction has there been to this book?

KATE O'REILLY
It's been really positive, I think most people were a little nervous to begin with, thinking oh my goodness we're going to go into doom and gloom and we're all going to get very depressed and in the doldrums. But the reality is the very opposite. I think because it's so beautiful - the art work is really outstanding - and the work itself is so varied and so courageous and in your face and optimistic that people come away feeling I think far more enlightened, maybe even stronger, about this subject because I think when we have a taboo and we're not allowed to look in that area, we're not allowed to discuss certain things it can become huge and frightening. And when you actually do, if you like, peer in, look over the edge, it's not actually that bad and I think it can actually be very helpful and a great solace as well.

ROBINSON
Nabil we keep on being told that we must put forward more positive images of disability - you don't worry at all that this book is undermining all that?

NABIL SHABAN
No, I mean I actually think that what it does is shows to non-disabled people, who do have a fear of death, that disabled people have a lot to teach and inspire in terms of ones attitude towards everyone's demise. I think a lot of non-disabled people who expect to live their three score years and ten will in fact admire disabled people because of their constant confrontation with death.

ROBINSON
But is that what you want to be admired? You know we keep being told don't we that we're not to regard disabled people as heroes and heroines.

NABIL SHABAN
No I think we want to be regarded as heroes and heroines in the same way as anyone wants to be regarded as a hero and heroine. We don't want to be regarded as a hero and heroine in the sense of an unreal presentation of who and what we are, we want to be admired for our real achievements.

ROBINSON
Nabil Shaban, Kate O'Reilly thank you both.



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