Our medical advances have outstripped our humanity

Published by The Guardian (8th August, 2014)

I can still remember each second of that day just before Christmas when everything changed. The happy family lunch, then the seizure suffered by my tiny new daughter, her eyes rolling and little limbs flailing. The nice paediatrician telling us gently she had “profound brain damage”, then carrying her with tears in my eyes through crowds of festive shoppers.

The next months and years are harder to recall, a blur of dark times later identified as the mourning period that parents in such cases endure. There were batteries of tests, endless scans, the same ceaseless questions as she was prodded, probed and wired up to weird machines. But there were none of the expected signs of brain damage, nor any clues over her condition from the doctors searching for a diagnosis.

One supposed expert measured our heads before declaring breezily that our daughter – then suffering up to 30 seizures a day – would have only minor impairments to her IQ. Others were more realistic, offering gloomier prognoses as it became apparent she would never walk, talk or feed herself given disabilities that were profound, complex and baffling to the medical world.

In those early days – about two decades ago – this lack of explanation for my daughter’s suffering drove me to despair, hearing her awful screams at night and seeing those dreadful epileptic fits in the day. It also meant we could not take the risk of having another child and we worried about the implications for our son – although my wife was more sanguine, saying it was probably just some ‘genetic thing’.

So it was good to see the announcement last week of a £300m package of public and private investment for the 100,000 Genomes Project, a Cambridge-based research initiative to sequence genomes of NHS patients. This is a significant step into the promised brave new world of medicine, with genetic code deciphered to discover, treat and even predict illness. It will also boost a related project focusing on children such as mine whose disorders evade conventional diagnosis.

As time went on and we adapted to our daughter’s condition, that lack of a label to hang on whatever made her the way she is became less important. It was always the first question new acquaintances asked if she cropped up in discussion, before toppling into a conversational black hole. But as she grew older, she developed her own character just like any other child; it was more important to recognise who she was and what she needed than worry all the time about the cause of her problems.

I saw often how people struggle to see past disabilities, however. The more I looked, the more I learned that most of the hurdles people with disabilities have to overcome are societal, forcing many into the shadows through a deadly combination of discomfort, discrimination and a lack of interest. The government says there are 11 million people in Britain with some form of disability or life-limiting illness. Yet a study by the charity Scope found that nearly half the public do not know anyone disabled – and more than two-thirds feel uncomfortable just speaking to a person with disabilities.

No wonder there is still abuse and violence against those with learning difficulties and physical impairments. No wonder governments can bungle disability benefit reforms with barely any concern among the wider public. No wonder local authorities can offer such paucity of services, if they exist at all. And no wonder prejudice remains so pervasive, even in healthcare where it routinely proves fatal.

My daughter’s condition is at the most extreme end of the spectrum, requiring 24-hour care. Yet she is happy and smiles often when the wretched seizures are at bay, giving love back to those around her and lifting spirits. Four years ago we finally got the diagnosis: a genetic disorder called CDKL5 discovered a decade after her birth. We were told she was among 200 recognised cases worldwide, although numbers grow all the time. I found this revelation after so long strangely unsettling; it was a reminder also that too many people are defined by their disabilities rather than their personalities or skills.

We see this again in the case of the Australian couple accused of abandoning a baby with Down’s syndrome, born to a surrogate mother in Thailand. This provoked global outrage, quite rightly if disputed claims they refused to take one twin because of his disabilities are true. Yet the furore seems rather synthetic when our own country aborts a rising number of such children simply on the grounds of disability, even up to the moment of natural birth and when apparent abnormalities can be comparatively slight.

This is not to quibble with any woman’s sacred right to choose, merely to highlight the casual acceptance that disabled lives are second-rate and can be discarded as too burdensome. Some people, even doctors, say such things explicitly; this is the backdrop facing people with disabilities even before birth. Now we enter the age of genetics, which offers such hope for advancing healthcare but has also sparked a new form of eugenics, with scientists talking of eradicating disabilities at birth from the human condition.

This has long been predicted; even 24 years ago Troy Duster,, a prominent sociologist, warned of a back door to eugenics made up of ‘screens, treatments and therapies’. Now zealots such as John Harris, bioethics professor at Manchester University, advocate what they call ‘enhancing evolution’ by eliminating genes that cause unwanted conditions to create ‘better’ people. Last year, he told me on television it was ‘morally wrong’ for parents to choose a child with a disability if science offered an alternative.

Those preaching this new eugenics conflate health and disability, harm and difference. They dismiss how diversity enriches the world, reject complex issues of choice, ignore implications of inferiority. They sweep aside Stephen Hawking writing about how motor neurone disease focused his work, or studies showing people with Down’s syndrome to be far happier with their lives and looks than the average person.

One tragedy of modern society is this failure to come to terms with disability, even as numbers rise with ageing populations and other medical advances. This is the true immorality: the shameful exclusion of so many people who could contribute so much to communities. Until society grips this, we cannot start to grapple with some of the most profound questions facing our species in the genetic wonderland. Sadly, it seems our technology has again exceeded our humanity.

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