On the day that our lives were turned upside-down by an emergency 38-week scan, I remember begging the neurologist to put us in touch with other families with children like our as-yet unborn child.
Some part of me knew – despite the medical predictions (“Your baby will never walk, or talk. He won’t be able to feed. He won’t survive the birth”) – that this wasn’t the whole story. I wanted a glimpse into the future. I needed to know, not just the worst case scenario, but the lived experience.
For whatever reason – perhaps because we were so very short of time to make our decision; perhaps because there were so few other families with children like ours in our area; perhaps because our wise consultant didn’t think it fair for us to invade their already complicated lives – for whatever reason, we never met with those other families. For whatever reason, we made the decision to go ahead with the pregnancy despite advice to the contrary. For whatever reason, Benjamin came into our lives.
Thanks to the amazing charity SWAN UK, I now do know several families with children similar to Benjamin. I know that their lives are just as complex and, at times, difficult, as ours. I also know that not one of them would have it any other way. Yes, we wish our children didn’t have to suffer. Yes, we wish society were more inclusive, accessible and equal. Yes, we wish our children’s siblings had a more ‘normal’ home life. But we never, for one moment, wish that they had not been born. Even the folks who, after that unpromising scan advised us to take the termination option, now acknowledge that all our lives are better with Benjamin in them.
The same is true of other disabilities and differences. You only have to watch this “carpool karaoke” video from last year to see how much joy, life, meaning, and promise children with Down Syndrome bring to their families – as much, if not more, than any neurotypical child.
And yet at least nine out of ten women faced with a prognosis like ours would choose an abortion. Ninety-one percent of mothers in the UK who receive a pre-natal diagnosis of Down Syndrome terminate their pregnancy. According to the European Surveillance of Congenital Abnormalities, between 2006 and 2010 in England and Wales 157 foetuses were aborted for cleft lip and palate and 205 for club foot. More than 90 previously much-wanted pregnancies terminated each and every year for conditions arguably much less severe than Benjamin’s.
Why the disparity? Why, despite all the evidence that children with disabilities are better off alive than dead, are so many of them killed in the womb? Why do parents, after much heart-searching, honestly believe that this is the best thing to do, for their baby, for their family, and for themselves? Why do they, in alarming numbers, reach such an apparently contradictory conclusion?
One answer could be that they don’t have all the information on which to make such a decision. That, as we were, they are given the stark medical ‘risks’ but no inkling of the beautiful chances. They assume they have been fully informed, and they don’t ask for more. And who can blame them? Suddenly finding that the child you are carrying has a disability is, for most parents, completely outside their experience or previous encounters. It’s not something covered in NCT classes. So they trust the medical professionals by whom they are surrounded at that critical time. They don’t press the doctors for the other side to the story, because they have no concept that one exists. The medical story appears to be the whole story. This puts a huge amount of power and responsibility upon (already overstretched) medical professionals.
What if the responsibility wasn’t all theirs? What if they could do their job, of giving us the medical information, safe in the knowledge that everyone already has some idea of what it is like to be disabled, to bring up a disabled child, to have a disabled sibling? What if people weren’t afraid of disability because they see it in their everyday life: at school, at work, at church, on TV, in the supermarket, on the bus, …? What if we hadn’t had to beg our consultant to put us in touch with another family like ours because they were already all around us?
What if all disabled people went to mainstream schools, were supported to live in their own communities, could access their playgrounds, shops, restaurants, cinemas, zoos, theme parks, leisure centres, trains and planes? What if everywhere met the requirements of the Equality Act to make reasonable adjustments?
What if, instead of special schools, special “autism friendly hours,” and “purple Tuesday” shopping days (one day a year when disabled people are invited to go shopping… on a Tuesday, outwith the lucrative sales and Christmas shopping periods, of course!), disabled people could learn, shop, work, travel, and play with everyone else? What if people who need support to leave their house, get support to leave their house, rather than being docked financial support because they can’t leave their house to get to an assessment? What if people with “challenging” behaviour (i.e., unmet communication needs) were able to live with their families and peers instead of being locked away for years, in units hundreds of miles from home?
Then, we might all be better informed. We might all have the lived experience necessary to see the full picture. We might see that disability is not scary. Disability is not wrong. Disability is not a tragedy. Disability is not to be locked away. Disability is not to be culled from the population. Neither is disability an “inspiration.” Disability is simply an ordinary part of the rich tapestry of human life. Then, we might realise that ignorance is not bliss. Ignorance is missing out on the wealth of gifts, skills and talents that is hidden in the diversity of our population; which rarely see the light of day.
Benjamin loves to swim. He loves to visit the park. He loves to go to school – and he is making great leaps in his ability to communicate. He is a joy to be around and if he could go to school, go to the park, swim, and so on, with his peers, a generation would be better informed and a generation would grow up for whom termination is not the obvious or only answer to what is seen as purely a medical problem. A generation in which everyone is a citizen with common human needs and a contribution to make, whether they need a little help or a lot.
I know that inclusion, mainly for historical reasons, isn’t easy to achieve. But it’s currently getting worse: we live in an increasingly hostile climate in which government policies, procedures, and propaganda, and the public attitudes they foster, threaten to force disabled people back from the society they have pushed so hard to enter, into nursing homes, segregated schools, or as prisoners in their own homes, just as at the same time medical advances such as NIPT make it easier and “safer” to identify and “deal with” disability in the womb. These combined pressures could see minorities such as the Down Syndrome community effectively eliminated in our lifetime.
We have a collective responsibility to turn this around. Our government needs to overhaul the benefit system and its mind-set so that it is no longer in contravention of Article 19 of the Convention on the Rights of People with Disabilities. Our local councils, businesses and attractions need to make Changing Places and accessible design a matter of course. As citizens, we need to lobby for better allocation of funding to children with ASN in mainstream education, for our rights to accessible public transport, and so on. As medical professionals we need to modify our language from “I’m sorry,” “There’s something wrong with your baby,” “Not able to live a ‘normal’ life….” To “Congratulations!” “Your baby may need more support than others,” “We can help you to live an ordinary life.” As parents, we need to foster our children’s naturally inclusive nature, not nurture a sense of disgust at anything different. As parents of disabled children, and as disabled self-advocates, we need to put ourselves out there as beacons of human rights. Because ignorance of disability is not bliss. Ignorance of disability is deadly.