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| TX: 16.03.06 - Living with paralysis PRESENTER: JOHN WAITE AND PETER WHITE |
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| Downloaded from www.bbc.co.uk/radio4 THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY. WAITE Now as you'll know from the news, I'm sure, the parents of Baby MB have won their fight to keep their severely disabled infant on the hospital ventilator. Baby MB has the most severe form of spinal muscular atrophy, a rare genetic condition which affects 1 in every 6,000 children and leads to almost total paralysis. It's meant that Baby MB has had to live in a high dependency unit in hospital since he was seven weeks old, with doctors arguing that his quality of life was so poor that he should be allowed to die. Well Rowan Jade, at 36, is one of that very small group with the condition who have survived well into adulthood. She's almost totally paralysed, she cannot sit up and needs the help of a personal assistant to perform the smallest physical tasks, including feeding herself. Yesterday Peter White joined her at her home in Bristol as she waited for the decision in the Baby MB case. ACTUALITY Hi, morning Rowan. Morning. JADE My name is Rowan, Rowan Jade and I live with my partner and our six year old daughter. My PA, my day time PA, would arrive at 8 o'clock and they come upstairs and begin washing, dressing me. I obviously choose what to wear and whilst all this is going on I try to get my daughter dressed and try to persuade her that brushing her teeth is more important than putting her Barbies in the bath. ACTUALITY - ROWAN JADE TALKING TO HER DAUGHTER JADE Obviously I look very, very different from the average parent. Children do question me a lot about why I am the way I am. And I think that by answering their questions it breaks down barriers. We also look at what's similar, what do we have in common and obviously because a lot of the children at school are friends with my daughter they come to our house, I'm taking Olivia to the parties and they're part and parcel of our lives. They come to play with Olivia at home, they see the lift and that's a huge treat sometimes they see me on my ventilator and being not phased by it at all. That's why people often misinterpret and make assumptions about people who are disabled because they don't have the experience of their own. Hopefully these children won't grow up making the assumptions that my life is intolerable because they see me laughing, they see me happy, they see me telling my daughter off when necessary, they see me as a parent rather than as a disabled person. PHONE RINGING TALKING ON THE PHONE JADE I work freelance so my work is different everyday. For example this week I'm in London for three days at an advisory group meeting advising on the formation of the new National Forum for Disabled People. Monday I was at my counselling practice, I'm also training to be a counsellor where I can [indistinct word] people. Yesterday I was at university all day and then today I'll be reading papers in preparation for going away to the meeting tomorrow. I've got invoices to send out, I've got a paper to write by next Monday. When we get back from the advisory group my mum will be here and so I've got my mum here for the weekend. WHITE What's been the effect of this case on people you know? JADE I would say the majority have been shocked, they've been shocked anyway because it is a shocking case but I've said to them do you realise I was in that position. WHITE Your mother was advised to stop feeding you for your own good. What was your mother's reaction to that? JADE Luckily she was horrified. She had an 18-month-old daughter sat on her knee, she was holding me as she was told that and she was shocked to hear that being given as medical advice. I'm astounded at the strength and the courage she had as a 22-year-old new mother to actually disobey the doctors, to go against medical advice and to continue feeding me. Without that decision I would have died within the month. Time and time again doctors said I wouldn't pull through, doctors said we should stop medication, doctors said it would be kinder to let me go. So the consequences of the illnesses weren't that huge but the consequences of being told repeatedly that this was the end, that's what had a huge impact on me. WHITE You clearly are very concerned about this case and the decision that's being made in it, is there not a danger that you in a sense might do the same as the doctors, in other words you might base how this - what should happen to this baby on how you live and your conception of what life should be like, in the same way that you say the doctors are basing it? JADE I've been very careful I think to not transfer my stuff onto Baby MB. I've not met him, I am very glad I'm not in that judge's position. But what I'm concerned about is that the parents receive the whole picture of what his possible future is. I'm also concerned for myself, I have to say it's self interest in that if there is a judgement that ventilators can be turned off when doctors consider a level of suffering that they feel is intolerable I have no guarantee that that won't happen to me. WHITE But could that self interest that you acknowledge, could that skew your judgement about the kindest thing to do for this baby? JADE I think a lot needs to change. I think that baby probably is suffering intolerably. To be in a situation where those that have your medical care in their hands think that you would be better off dead is in my view an intolerable situation. WAITE Rowan Jade speaking to Peter White. Back to the You and Yours homepage The BBC is not responsible for external websites |
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