Tom Shakespeare

One of the most troubling dilemmas that the advance of science forces us to face is that of prenatal diagnosis.  Every potential parent now becomes a bioethicist, as they decide which tests to accept during pregnancy, and how to act on them.  Continue?  Or terminate?  Having to take responsibility for making a choice makes life more difficult.  The option of having a disabled child may seem like taking on a terrible burden.  Disability is always seen as tragedy, never as blessing.

But I tell people: consider the implications of the “normal child”.   Start with a year or two of total dependency, with your wailing, leaky bundle of demands.  Then continue for a couple of years of frustration and tantrums.   No rest, no freedom for Mum or Dad. Next, the anxiety of school and peers, and tests and keeping up with the crowd, and so many things to buy.  Then puberty strikes: more tears and tantrums, the blank face, anger at everything.  Weary parent relearns patience, becomes a taxi driver, digs deep in their wallet to keep up.  As the child becomes older and freer, the stress is replaced by yet more worry: is he safe?  When is she coming home?  What will he do with his life? And finally, after twenty years of emotion and sacrifice and commitment, the child leaves home, rarely to be seen again.

People do not tell the truth about normal parenting, and its difficulties.  We become soppy at the sight of a baby, but downplay the huge investment which having any infant entails.  Disabled children do not have special needs: they have the same needs as anyone else – love, attention, care and support.  The truth is, both the disabled child and the non-disabled child are a joy, and at the same time a burden.  No amount of medical intervention can deliver the perfect baby.