When I was ten years old, I had a best friend. Her name was Helen. She lived ten minutes up the road on a smallholding with ponies (!) and had her own (rickety, damp-smelling) caravan, where we used to spend our afternoons hiding from our little brothers, singing Jason & Kylie songs, trying on lipstick and eating Cadbury’s Crunchies. When we were eleven, on the basis of a ‘verbal reasoning test,’ we were sent to different schools: she to the comprehensive, while I went to the girls’ grammar. I didn’t understand what was happening, but I remember crying and begging my teacher to fix it so that we could stay together. It was for the best, she said. That was the system. There was nothing she could do. I didn’t realise at the time, but it was my first taste of segregation. I didn’t know any better.
I never played with Helen again. I had a good education, a privileged education. An education my parents wanted, worked hard for, planned, and bought a house in the right place for. But it was a segregated education, and not entirely a happy one. At my school there were no boys, few ethnic minorities, and I remember no one with a disability. In a world of uniformity, I was picked on as the odd one, and I thought it was my fault. I didn’t realise it was the system that was at fault – how could I? I didn’t know any better.
When I was 38 weeks pregnant with my second child, I was advised to abort him on the grounds of his likely disabilities, his hypothetical quality of life, and his potential impact upon the lives of those around him. I almost followed that advice – I didn’t know any better. Many more parents do follow that advice, because exclusion and segregation don’t start with the ‘eleven plus;’ they start at 24 weeks of pregnancy. This is the point at which disabled children are denied the automatic right to life that is granted to non-disabled children. Right across the country, at their twenty-week scans, mothers bearing children with something as innocuous as Down Syndrome are told, “I’m sorry,” when they should be hearing “Congratulations.” They rarely challenge it. They don’t know any better.
But – oh my goodness! – the impact Benjamin has had upon the lives of those around him! The opportunities he has brought us; the things he has shown us; the friends we have made; the gifts we have uncovered in him and in ourselves.
Even so, until a few months ago I assumed that Benjamin was destined for a life in special schools – I even fought to get transport so that he could travel twenty miles away from home to a special school. It’s a good school, with fantastic staff, top-notch equipment, and excellent support. It’s the school best able to meet his needs. However, Benjamin spends the vast majority of his time in a class of seven disabled children. He has minimal interaction with his non-disabled peers and they have little knowledge of him. Because his school is a twenty-mile taxi ride away from home, he has no chance to become known in his local community, to make local friends, to walk to school with his siblings, to have a school photograph taken with them. And I mourn these things.
I assumed that Benjamin would spend his afternoons and evenings at home with me and, when he is finally spat out of school by the system, into a community that barely knows him, would move to a life in day care centres, if he lived that long. I assumed that he would wear the clothes other people put on him, watch the TV shows other people switched on, maybe play boccia with other disabled people. He would have little to contribute. I didn’t know any better.
Now, thanks to a course called ‘Partners in Policymaking,’ I realise that Benji could – and should – be supported to go to his local school with his sisters; where once I begged for special provision for my “special needs” son, now I crave an ordinary life for him. He will go to Beavers when he’s six (they’ve already agreed to take him), take part in our town gala and the church summer holiday club, swim with his friends, go out in the evening. He should choose his own clothes and toys, and have a turn in charge of the TV remote. He can be happy, have friends, and play a meaningful part in his community.
Partners in Policymaking brings together disabled self-advocates and the parents of young disabled children to work towards a more inclusive society. To be honest, I hadn’t realised that our society was not inclusive already. I certainly hadn’t realised that the life I had envisaged for Benjamin was not inclusive. But the becoming-ever-so-slowly-more-equal rights so hard fought for by women, ethnic minorities, and the LGBT+ community do not yet extend to disabled people. Exclusion, segregation and deliberate discrimination are rife in the UK today. And I had been a part of it. I didn’t know any better.
Segregation is at its worst in the Assessment and Treatment Units that are no improvement upon the ‘institutions’ of the past. But even well-meaning initiatives – ‘Purple Tuesdays,’ ‘Autism Hours,’ special waiting rooms at railway stations – unwittingly perpetuate the segregation which maintains an ignorance of the fact that disabled people are just people, with gifts and capacities, needs and wants, just like everyone else. No wonder many of the abled consider the disabled to be a drain on society, if that’s all we let them be. Why should hard-working businesses spend money building Changing Places toilets – can’t disabled people just shop on the internet? Disabled people don’t go the pub or the cinema, do they? Well, surprise surprise, if you build them, we will come.
The good thing is, inclusion doesn’t need to cost any more than segregation. If all the funding that were spent on specialist schools and units, on transport across – or out of – local authority, and on all the excellent teachers and support staff in special schools, were transferred to mainstream settings, everyone could be supported to reach their full potential. If the huge cost of keeping children and adults locked up in ATUs were diverted into providing support and building relationships in their community, we would see clearly that there was no need for these institutions in the first place.
The great thing is, including disabled people in ordinary, everyday life doesn’t make things worse for the rest of us! Why would it? It doesn’t make things worse when ethnic minorities, women, and gay folk are included. It makes life richer. It makes our environment more accessible to all. It makes our children more accepting, and kinder. For instance, if we can meet Benjamin’s needs in terms of access to our local swimming pool, we undoubtedly make that pool more welcoming for families with young children, and many others. And when Benjamin can access the pool, everyone gets to see the joyous smile on his face as he relaxes in the water. In sharing the water with Benjamin, his peers start to experience disability as normal and not something to be feared. When disabled people are included, they become visible; when they become visible, we see that they are just people. When we see that we are all equally flawed and equally gifted, there is no reason to exclude anyone. The late Jean Vanier put it much better than I can: “When we love and respect people, revealing to them their value, they can begin to come out from behind the walls that protect them.” We start a cycle of inclusion: after just one generation, everyone could know better.
The lovely thing is, inclusion doesn’t have to mean more fighting. Inclusion really isn’t all about ramps and doorways, toilets and hoists, infrastructure, equipment, personal assistants, … and money. Inclusion can start at home and in the community. It starts by making people feel welcome, building connections with those who are different to ourselves, recognising everyone’s gifts and capacities, nurturing relationships, and solving problems together.
I don’t feel guilty about how I’ve behaved in the past because, being brought up in a segregated society, I didn’t know any better. I don’t blame the professionals, who are taught to focus on differences, problems, and deficits; who don’t have the time, training, or freedom to consider people’s potential, to realise people’s dreams. They don’t know any better. But the United Nations knows better (the UK is one of only two countries to have placed restrictions on the implementation of Article 24 of the UN Convention on the Rights of Persons with Disabilities, which covers inclusive education). Disabled people like Benjamin know better. My daughters will know better. Everyone needs to know better. So I don’t feel guilty, but I do now have a responsibility to act.
I feel like I’ve aged several years during the eight months of the Partners in Policymaking course. Partly through lack of sleep, intake of gin, and travelling. But mostly I feel like I’ve grown up, from an angry child to a constructive, collaborative adult. Maybe. I’m a work in progress – aren’t we all? The wonderful thing is that changing the world no longer seems to require power, position, or politics. By changing our lives, and the lives of those around us, we can break that generational cycle. Step by step we can create an inclusive world.