Baby MB case shows who true experts are

The other day, Rowan Jade’s morning started normally, she told me. She got up at eight, leaving herself just enough time to dress and get ready to take her six-year-old, Olivia, to school. A pair of lost gloves and a mislaid favourite mug for her daughter’s drink at break time delayed proceedings. But it was going to be a stressful day anyway. She had an important conference to prepare for the next day – lots of dry paperwork to familiarise herself with – and she was worried about her grandfather, who was seriously ill in hospital. Oh, and she was awaiting the judgement in the baby MB case.

She had an important reason for caring more than most about the outcome because Rowan herself has spinal muscular atrophy (SMA), the condition which doctors say will make this baby’s life intolerable. The point about SMA is that it does vary in its severity, but Rowan believes that her own case is comparable to that of the baby boy. She is paralysed except for the ability to move one finger; she has not sat up since she was 14, and needs help with any activity requiring physical movement.

And yet, talking to Rowan, it is clear she defies all the stereotypes. She is funny, fun-loving, and incandescent at the idea that someone who doesn’t know her should make a judgement about the tolerability or otherwise of her life. And, as she is the first to admit, the decision in this case has implications for her. It has been acknowledged that baby MB has the ability to respond and understand, and a decision to end his life would, in Rowan’s view, set a dangerous precedent, which could have implications for her and people like her.

We now know that the High Court judge in this case has said that his judgement should be seen as referring only to the facts of this case, and that conclusions should not be drawn about it setting a precedent. Being wise after the event, Rowan would probably now be delighted if it were to be deemed to be binding in future similar cases. But whatever the legal status of such a judgement, these decisions have a huge effect on the thinking of doctors, lawyers and other professionals.

But Rowan’s real complaint is that the one group of people from whom almost nothing is heard during such cases are the very ones who could give an insight into the life being judged. As far as she knows, no evidence has been heard from someone like herself, who has lived with SMA for well over 30 years, and that therefore nobody has been able to hear that, against all the preconceptions of people without a disability, life is not intolerable: that, as she puts it, dealing with a disability, however severe, that you have grown up knowing how to live with does not stop you feeling that life is a most incredible gift, and a very acceptable alternative to death.

Rowan knows that, if you tell someone who is hardly ever ill that needing to ask someone to help you, even when all you want to do is blow your nose or sip a cup of tea, should be intolerable. What she doesn’t understand is why it never occurs to people to talk to those who could put them straight. At the moment, she is not waking up each morning wondering whether there is a cure for her impairment: what she is wondering is how one of her major interests, this year’s Formula One Grand Prix championships, will work out; what’s on at the Bristol Old Vic; and, oh yes, where will Olivia have left her gloves.

Having a disability, even of the severest kind, does not mean that it is the be-all and end-all of your life, even it does seem to be the only thing others can see when they meet you, and all they want to talk to you about. Rowan is mightily relieved that the decision did go the way it did in the High Court on 15 March. But she has one more thing on her mind: if there is an appeal against the decision to prevent doctors turning off baby MB’s life support system, will she get her chance this time to put the other side of the story?

Peter White is the BBC’s disability correspondent