Who Wants to Live in a World Without Rosies? – March 2016


THIS year may go down as the pivotal moment in history that led to people like our daughter Rosie becoming extinct. Mankind may reflect for centuries to come about a particular species of human being, with a subtly different genetic profile, high in emotional intelligence, with a lower than average IQ, that was systematically eradicated like a disease.

Down’s Syndrome is not a species of course. But it is not a disease either. Among those of us with direct experience of the condition, you would have a tough job finding someone who believes that it should be treated in a similar vein to smallpox. But that is what is happening. The year 2016 marked the recommendation from the UK’s National Screening Committee that the new non-invasive genetic screening test (NIPT) become available through the NHS. Already in some countries with the test – such as Iceland – there have been zero Down’s Syndrome births since its introduction.
With an already 94 per cent termination rate for foetuses prenatally diagnosed with Down’s Syndrome in the UK, it is with heavy hearts that my wife, Victoria, and I realise that this generation may be the last. That our daughter, Rosie, may face her challenges alone. The last generation of a beautifully flawed group of human beings who are only just beginning to be understood, after centuries of mistreatment and being written off.

As parents of a child with the condition, we have been exposed to a fanfare of newspaper headlines. “UK to be Down’s Syndrome Free by 2020”, for example. I’ve even read advocacy for “post-birth abortion” for this so-called terrible affliction. Journalists band about terms like “suffering” and “debilitating condition” on the presumption that they understand progress when they hear it. In the meantime, I look up from my newspaper and marvel at the irony that Rosie is the one inflicting suffering on her two siblings by poking them in the eyes and stealing their toys.

Don’t get me wrong – Down’s Syndrome can be challenging, but not in ways most people think. The reality of the challenge is more like having a typical child who, when they master the use of their low muscle tone, become Teflon-coated double-jointed micro-Houdinis, capable of escaping the firmest of nappy-changing grips and freeing themselves from car seats. It can also be difficult to make judgements sometimes. Like when and how to use the naughty step. There’s no Super Nanny: Down’s Syndrome Edition.
In spite of the challenges, however, numerous studies have consistently shown that parents, siblings and the individuals themselves with Down’s Syndrome are happier for having the condition in their lives.

As a baby and now a three-year-old toddler, Rosie has an effect on others that is too consistent to be coincidental. Passing strangers smile at they watch her pulling her sister’s hair, stealing her brother’s dummy. “How wonderfully normal,” their look seems to say. I see them walk on, with their hearts lifted just a little, and feeling slightly less scared of something they don’t understand.

But as we start to move out of those cute early years, I wonder how much longer others will look at her that way. Will those same people stop seeing normality and switch to pity or prejudice?

Last year, my wife and I visited the Holocaust exhibition at the Imperial War Museum. It was not our first visit, but our recent experiences caused it to take on a whole new meaning. We observed the beginnings of the Nazi eugenics programme, encapsulated in headlines not dissimilar to the ones I am reading today. They spoke in an altruistic tone of “freeing these wretched creatures from their plight”. We saw the dissection tables where people like Rosie ended up. And we saw the ease with which this accepted logic began to extend beyond disabilities into more and more nuanced notions of perfection.
Tomorrow is World Down’s Syndrome Day, and for the past two years, I have marked that occasion by writing on these pages. In 2014 – when Rosie turned one – I wrote about my initial difficulty of coming to terms with the fact our second daughter had been born with the condition. In 2015, a few months after the birth of Rosie’s little brother, I wrote about the failure of social attitudes to keep up with the dramatic progress being made by people with Down’s Syndrome.

This year, Rosie has turned three, and the intent of my message remains the same. I want as many people as possible to see what Victoria and I see now in relation to the condition. I want people to understand the progress that has been made and the fulfilled, independent lives that are becoming commonplace for those who have it. The message comes with a newfound sense of urgency, however, in light of this year’s medical progress.

If you’d like a demonstration of what I mean by progress, then look no further than the TED talk by Dr Karen Gaffney. Dr Gaffney happens to have Down’s Syndrome. She is a public speaker, disability rights activist and, when not doing that, an accomplished swimmer who has swum the English Channel.
As she so eloquently puts it, the reason for the fear of her condition that causes such an enormous termination rate is the misunderstanding held by many in society, including the medical profession who offer them advice, which is based on information that “reflects the past and ignores the present”. While I watched in amazement as she stood on the famous TED platform, as engaging as any speaker I’ve seen, it occurred to me that a few decades ago she would likely have been in an institution instead, having never been afforded the opportunity to learn.

Now, that’s progress. And the progress continues at an astonishing rate. Who knows what this generation of Down’s Syndrome children will be capable of. Yet the de-facto assumption upon diagnosis appears to be a termination, which will be booked for you the following day. Parents report being told apocalyptic, outdated opinions of what life will be like to help them with their decision. I’d go as far as to say progress with this condition over the last 30 years has paralleled the rate of technological advancement. If you can imagine an organisation making decisions on their IT infrastructure based on their computer knowledge from the 1970s then you may get some sense of how we feel about terminating because of a Down’s Syndrome diagnosis.
“But why bother?” you might say. Why develop our understanding of how to educate and nurture imperfect humans when they can now be safely avoided? One word springs to my mind: diversity.

We should be careful about what we wish for. What seem like obvious conclusions about the complexion we would wish for our society might well lead to a world full of narcissistic consumerism-driven clones. It’s a funny thing I’ve noticed – while people with Down’s Syndrome have more difficulty learning, they often end up nicer people. It does cause you to wonder about what we’re teaching.

Children with Down’s Syndrome and other learning difficulties can now be seen in mainstream schools. The effect on the children exposed to this and all manner of diversity appears to be to develop the attitudes that will stand them in good stead long after the world has forgotten what grades they achieved. Exposure to people of different social classes, races, sexual orientations helps us to become more accepting, empathetic, humane humans – and where disability is concerned, to see the person behind the disability. Having witnessed a wide range of attitudes to our daughter that span generations I can safely say that this is one area where age and wisdom do not appear to go hand-in-hand. Young people do it best.

I wish I had that ability. It’s precisely because I wasn’t exposed to such diversity in my formative years that Rosie’s condition came as such a shock. Now I see the person behind Rosie’s condition, but I still struggle sometimes to see the person behind many other disabilities.

Last year I watched as the BBC documentary-maker Stephen Nolan “saw behind the disability” for the first time while making a film called One Extra Chromosome. He broke down in tears when his interviewee (a qualified teaching assistant with Down’s Syndrome) remarked: “No-one takes me seriously. You asking me to open up to you like this means everything to me. So … thank you.”

Why the tears? Because in making a documentary about people with Down’s Syndrome he had thought he was alleviating prejudice against them. But those few words, by his own admission, made him realise that he’d been just as prejudiced as everyone else. Because, after hearing those three short sentences, it was the first time he had seen the capable, fully qualified, working member of society that stood before him. Full of interesting insights, unique perspectives, personal dreams, emotions and points of view. You know … a person.

These sorts of television programmes are beginning to make an impact. It’s no coincidence that the condition has exploded on-screen – it’s been quite a deliberate attempt to educate by Down’s Syndrome charities and parents.

It seems that no soap or TV advert is now complete without a Down’s Syndrome actor. It is a good fit with big brands wanting to associate themselves with disability-inclusion while providing the awareness education that parents and charities want to see.

Today, we find ourselves in a painfully paradoxical situation. We finally know how people with Down’s Syndrome learn and how to teach them. Progress is unlocking their lives. And in return, the prism of an education is enabling them to enrich our lives with fresh perspectives. These are exciting times for people with Down’s Syndrome and for everyone around them. But as we head towards the perfect understanding of how people with Down’s Syndrome should live and learn, our testing and eradication will mean that we have none of these people left to apply that knowledge to.

However, in my opinion, the test is not the problem. It’s a distraction from the real issue. And in fact, the test does represent progress. Previously, testing for genetic conditions of all sorts entailed a risk of miscarriage. Now it does not. That’s a good thing. But medical progress on the technical side highlights society’s failure to progress at the same pace. Attitudes. Understanding. Awareness. It is the response to the diagnosis – and more specifically, the underlying reasons for that response – that are the issue.

If I was looking from the outside in, I’d probably think that I hold this point of view because I have to. That’s probably what I would have thought too before having Rosie. Or that it’s simply that we don’t want us, or Rosie, to be alone with Down’s Syndrome, in a world that is only just coming to terms with it.

I challenge myself on these points frequently, wondering if it might be true. But it’s not.

I’m fairly sure that if our child had a genuinely debilitating, painful condition then, in spite of our love, I’d acknowledge that this is not an experience I’d wish on others. That if it is possible to avoid it, then it should be avoided. But the opposite is true. In some ways I wish it on everyone. It’s a gift that has changed our lives for the better, and continues to enrich our lives every day. I would never change this experience. Nor would I change one hair on Rosie’s head. And that’s the truth. We’re better people for it and I believe that our children will be too.

This is not a “pro-life” point of view. Nor is it an emotionally charged knee-jerk reaction to a test that could have meant that Rosie was never here. It is as genuine and objective a statement as I can possibly make that we need these children and these people in our society. We are better for having them. They are not in pain. They are not suffering. They can live happy, independent lives and they will enrich those around them in schools and workplaces, making everyone else a better person too.

Eradication of individuals on the basis of IQ, looks or any other material notion is not a route we want to go down. It won’t make the world any better. In fact, the world would probably be a better place if every family had one member with Down’s Syndrome. But if we don’t properly educate those parents who get a diagnosis, then in the future, it seems that no families will.

We don’t worry any more about Rosie’s capabilities, or the likelihood that she can have a happy, fulfilled life. Rather what concerns us is the ignorance she will face; the judgement and limitations imposed on her from the wider world who don’t understand her capabilities. And more widely we worry about how those societal attitudes taint the decisions of new parents faced with a Down’s Syndrome diagnosis, causing an inability to consider their choices based on information that accurately reflects the present situation and ignores the past.

So, you see, this last year our perspective has changed. It’s no longer Rosie we’re worried about. It’s you.