Knowing better

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.

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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.

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“Inclusion doesn’t meaning getting wet though, does it?”

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.

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A drain on society?

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.

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14 thoughts on “Knowing better

    • Hey Paul! Is it Friday?! In Scotland the course is run by In Control Scotland. I think there are versions in England too although they don’t attract such high-calibre speakers. In terms of policymakers, we had the head of social work strategy with Social Work Scotland at our graduation, and Scotland’s head of SDS is a big fan too. Past graduates have gone on to become local councillors. Otherwise it’s up to us to decide what to do with our skills and knowledge but a lot of it is about working from the ground up xxx

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  1. Gosh I wish I had know you had done this I did this when Archie was 4, one I did was called sharing knowledge it was amazing and our local authority at the time was well driven to be thinking outside the box. But a few years later and funds dried up, leaders left the council and now I feel we are back at square one. I have been back intouch with some of the facilitors just to give me a boost against as I lost all faith in fighting and proving to the LA we and especially Archie and others deserve better. I will bounce back when I get better x

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  2. This has rally made me think as I actually faught to get my son into a special needs school. I was a mainstream teacher and I felt mainstream really wasn’t right for my son. He almost finished primary and while I wish he was nearer home I know that the local school which his sister attends really wasn’t the right place for him for all sorts of reasons. Even back when I enrolled him locally we both agreed that it wasn’t the right place. Even should the support staff have been brought in locally the building itself wasn’t suitable with no changing places toilet and no break out rooms.
    This has really made me think though as neither of mine go to Sunday school though they very much do chose what they wear and what they watch and very much love life.
    Great post and you have really challenged me and made me think.

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    • Thanks for reading Miriam. I think at present the situation in Scotland makes it very hard because almost all resources are channelled into special schools and units. Thus for our children we often have to choose between the school that can meet their needs in the short-term (toileting, quiet spaces, trained staff, etc) and the local school that will set them up for the future in terms of building a network of local friends and contacts. What I hope and pray is that somehow we will create a shift towards the system that is envisaged by Scottish law and prescribed in the UNCRPD, whereby all children can go to their local mainstream school, with full and appropriate support. xxx

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  3. Just read this : 1 Lay off the gin!
    I thought it appalling when they banned Ex-service amputees from a pool in Birmingham because it “upset the Kids” Dad

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  4. Interesting. And challenging! Pudding was in our large open-plan local mainstream until part way through Year 1, but now is in a special school that I love. As his peers became more focused on learning and the gap between them grew I couldn’t see it continuing to work. To be honest, he really needs the small group and focused space that he has now, or we would only see more and more disruptive behaviour.
    However, I very much appreciate that his school now is in the same building (and the classrooms off the same corridors as a mainstream primary). That model means that there is still contact between the two sets of pupils while giving him and the others in his class a safer environment.
    I still believe that inclusion should be tried absolutely wherever possible, but sometimes I worry that ‘Inclusion for All’ isn’t actually in the best interests of everybody.
    (Difficult to explain all my thinking in just one comment, and aware that this opinion won’t always make me popular!)

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    • Thanks lovely. I feel absolutely the same about Benjamin’s specialist unit – it is absolutely the best place for him given current provisions, and I am glad that it is at least attached to a mainstream primary, even if it is one twenty miles away from his hometown. I think “inclusion for all” is a much misunderstood concept – it should not mean a “one size fits all” model, but that everyone gets their needs met in order to have an ordinary life xxx

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  5. Wow! Just love this, thank you so much for sharing! I suppose each parent needs to make the choices that are best for their child, in our case a specialist setting works best for James, but perhaps the important thing is that parents have the choice and can access the best provision for their child, rather than not having these options. Great to read your story! 🙂

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    • Thanks! I guess the problem with choice is it requires infinite resources and money… Can councils afford to fund both special schools and adequate support in mainstream? The drive to efficiency tends to push (at least in our area) towards ever-more centralised places where ASN children can receive all their education and healthcare in one place without ever having to go into the real world. But how does that equip them for the real world…?

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  6. What an amazing post and course by the sounds of it. The whole autism hour or autism friendly screening at cinema thing always gets me. Don’t get me wrong, we use the screenings a lot and without them would struggle to go as a family. But there is just one autism friendly screening a month. At low estimates 1 in 100 people are autistic. Applying the same ratio would mean having an autism friendly screening once a day at our local cinema … not once a month. But they wouldn’t need to have them all the time if they just did a few things in regular… or some regular screenings that would make a difference. Letting us know when the adverts would finish for example. But that’s not how it works, and that’s just something simple like a screening not making physical changes to venues etc. I hope we sort it out I really do.

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    • I can imagine a lot of neurotypical folks would love to know when the adverts will end and the actual movie will start too! Generally making things more accessible makes them better for everyone, it’s a no-brainer… Or it should be! Thanks for this Ann xxx

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  7. Pingback: Trailblazing | The long chain

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