It’s about a year since I wrote a post for Scope about my disabled son, Benjamin, whom we decided to keep despite being offered a late termination of pregnancy. Amongst the many supportive comments on the post was one (swiftly removed by admin) that stuck in my mind: a comment berating me for my selfishness and the expense Benjamin would cause to the taxpayer. Benjamin’s recent stay in ICU – at an estimated cost of perhaps £10,000 (estimate based on this article) – brought this back to my mind. In fact I’ve heard variations on this opinion several times, perhaps increasingly in today’s political climate: that disabled people are ‘a drain on society’ and those of us ‘lucky enough’ to have the opportunity should prevent them coming into the world.
As new genetic tests become available, it is becoming more and more possible to do just that – for instance, as the NHS considers rolling out a non-invasive prenatal test for Down’s Syndrome (as well as Edwards syndrome, Patau syndrome and Turner syndrome), many are voicing concerns that it is being presented as an opportunity to ‘eradicate’ Down’s. As Hayley Goleniowska puts it in her blog, Downs Side Up, ‘I fear Down’s Syndrome is just the very visible tip of a much larger iceberg, with adults with non specific learning disabilities now being swabbed to look for genetic patterns to enable earlier diagnosis [and termination].’ Discriminatorily, for disabled babies there is no legal limit in the UK on abortion before birth although the limit for non-disabled babies is 24 weeks.
Quite apart from being frankly insulting to the millions of disabled people who contribute fully to society in every way on a daily basis, the premise that even the most severely disabled are a ‘drain on society’ is built upon a fallacy: that society is fundamentally about money. Taken to its logical conclusion, the moment any one of us is hit by a bus, contracts meningitis, enrols at state school, or wants our dustbin emptied, according to this argument we become a drain on society.
The word ‘society’ comes from the Latin socius (companion) and was first found in English in the mid-16th century meaning ‘companionship, friendly association with others.’ Society as thus defined is based on give and take. Yes, Benjamin receives disability living allowance from the state. Yes, in his first two and a half years he has received more healthcare input than we would have liked. Yes, his education may cost more than that of other children. But Benjamin gives hugely in other ways. No one can fail to be brightened by his smile, relaxed by his hug. The determination with which he tries simply to reach out and touch something that has caught his interest could teach many of us a thing or two about persistence. He has certainly taught me about priorities, principles and prejudice. He makes me acutely aware of the state our society is in, and more dedicated to making it better. It is no coincidence that disabled people, their families and carers are often the ones campaigning for social justice, battling against climate change, fighting discrimination in its many forms.
Benjamin will never get married or hold down a job. He will never start a business, own a house or vote in an election. He will also never get drunk and cause a multi-car pile-up, hold up a shopping mall with an AK47, or evade his tax bill. But his life has value, his voice should be heard and his needs should be met, because that is what society is all about.
I am very aware how lucky we are to live in a country where society, on principle and in practice, provides help with the extra needs associated with being disabled or caring for a disabled child. But believe me, families like ours are far from living a life of luxury at the expense of the state; nor do we enjoy being dependent on it. Benjamin’s specialist bed, bath chair, even his toys, are second-, third- or fourth-hand, and go back into stock to be used by another child when he outgrows them. For his feeds and medications, we make do with the same number of syringes in a month that a hospital would use in one day! Benjamin is too young to receive nappies from the continence service, but when the time comes we will receive perhaps half the number needed to keep him comfortable; the rest we will have to buy. I hesitate to speak for other families, but I suspect that most of those in our position are proud, even stubborn, and as a consequence extremely resourceful. Our dignity and that of our children is precious, so we tend to explore every avenue before finally turning to the state. Furthermore, a recent campaign has highlighted the extra costs of being disabled: costs over-and-above those borne by the state. Thanks to society, living with a disability has been made easier, but it is still harder than it should be. Choosing to let Benjamin live was never the easy option.
It is often said that the measure of a civilised society is how well it looks after its most vulnerable members. Benjamin shows us all that is good about our society, and all that can and should be improved. I cannot fault the care he has received from the education, health and social services, nor that from charities such as the Newlife Foundation, Capability Scotland and our local children’s hospice. We would not be where we are without the support of friends, family and neighbours. But there is a long way to go until our whole society values people like Benjamin for their true worth and doesn’t disparage them as a drain on resources.
Giving Benjamin a chance was the right decision for him, for his family and for society. Anyone who thinks otherwise should come and meet him; they might just change their mind.