Born Whole

Last night BBC2 broadcast a documentary by the British actor Sally Phillips, titled A World Without Down’s Syndrome? Phillips is the mother of three young children, one of which has Down’s syndrome and with the introduction of a new non-invasive antenatal test that promises to detect 99% of all cases of Down’s, Phillips raises a crucial question:

“What kind of society do we want to live in and whom do we think should be allowed to live in it?”

Since this non-invasive prenatal testing (NIPT) test was made available in Iceland, 100% of Down’s babies are now aborted, signalling that Down’s syndrome has become a disability for which it’s socially acceptable to terminate.

With the NIPT test becoming available to expectant mothers through the NHS, Phillips asks if the same will happen in Britain where already nine out of ten Down’s babies are terminated and where such termination is legally permitted right up to birth as Down’s syndrome is classed as a severe disability.

Paradoxically, scientific advancement in prenatal screening for Down’s is paralleled by an increase in research into Down’s syndrome, especially in the field of education, which means that given the right support, the majority of people with Down’s today can attend mainstream schools, get a job and live independent lives.

People with Down’s syndrome aren’t the problem; the problem is we have a society that is unable (and unwilling?) to care for people with special needs.

Screening for Down’s is only one aspect of a huge field of genetics, and within a near future, we’ll most likely be able to screen for a wide range of conditions, disabilities, illnesses, etc. that until now we accepted as part of what it means to be human.

At the end her hour-long documentary, which I strongly recommend you to watch, Phillips leaves the viewers with some thought provoking and soul searching questions:

“If we’re heading towards a world where we choose more and more who gets born, I feel we really need to think about what it is that we value. And as our powers of choice get greater and greater, who are those people that society might leave behind?”

For those of you who say, “well, Phillips has a child with Down’s syndrome, so, of course, her view’s going to be very slanted,” take a look at this TED Talk by Karen Gaffney, an advocate for people with Down’s syndrome who happens to have Down’s herself.

Needless to say, not everyone born with Down’s syndrome is going to be as high achieving as Gaffney and other prominent members of the Down’s community, but neither is everyone born with a typical set of chromosomes going to grow up to become a superstar.

Imperfection is what makes us all human.