Ten years ago I started writing a book about G. I called it “A Square Peg” It’s still sitting in a file on my computer, I never did get it published. It got rejected from one publisher and I lost the confidence to submit it to any others. Maybe one day I’ll revisit it.
I used to think of G as a “square peg”, never quite fitting into the norm and struggling to fit into everyone else’s idea of what it was to have a learning disability, even within his special school which was for kids with severe and profound disabilities. On Thursday I went to a conference about transition and it got me thinking about this again.
I’ve been to lots of conferences about transition over the last eight years and this was a really good one with lots of great information stands and speakers. I was thrilled to be asked to be the opening speaker. As those of you who have read this blog before will know this is where I am at my happiest (work-wise anyway!)
I was heartened to hear that there was a consensus in the room about the “getting a life not a service” concept – FANTASTIC! And, I think I even got people thinking about the jargon they use (though there was still plenty of it to be heard people started apologising for using it – RESULT!) The topics of the day included the usual transition stuff, housing, education, leisure, work and sex and relationships.
Throughout the day there were times where I wondered how G fitted into what people were talking about even though the talks were about disabled young people, with a lot of reference to people with learning disabilities. I did what I’ve done for the last 21 years and started pondering the following questions….Do they mean him too? How does this include him? How can I include him in this?
During the first question and answer session a chap got up from a provider organisation and started talking about the need for people to be “ready” for supported living. I’ve heard this “readiness model” spoken about before. Actually the last time I heard it spoken about I walked out of the presentation (I’d never done this before nor have I since and I have a sneaky suspicion it was the same chap!) According to said chap, people with learning disabilities need to have acquired a certain level of skills and ability before they can successfully move to supported living (and yes, he meant supported living not independent living!). “If we don’t enable them to have these skills we will be setting them up to fail” he said. Mmm well…I beg to differ!
Was G ready for Supported living? Well within the “readiness model”, NO and he never would be. Was he ready to live his life as an adult in a way that made sense to him…YES he was and he’s doing it! So stuff the readiness model!
Later, there was another talk about further education. The speaker talked about the absolute essential need for reading and writing skills. The gist was that reading and writing was a basic skill that everyone needed in order to lead a fulfilling life. Mmm, G will never learn to read and write does this mean his life will be unfulfilled?
Does having certain skills improve your quality of life? Well yes of course but some people learn these skills at a much slower pace. (At twenty two G’s probably now ready for some of the things they were trying to teach him at nursery) Some people will never acquire certain skills, however much they are taught, however much they are encouraged and for some progress means maintaining the skills they have already acquired. G’s understanding and level of ability has progressed over the years but if we are talking educational ability then he’d still be working towards level one of the national curriculum, with a let’s not hold our breath proviso. Even so he has a good quality of life and in the scheme of things being able to read and write is just not important to him and neither are a lot of others things that lots of people judge their quality of life on.
So does any of this matter? Well to him, no is doesn’t. But I think to families, in the beginning at least, it really does because it’s something we are faced with all the time. However, if we are truly person centred in our thinking then it’s the individual person’s gifts and talents, what’s important to and for them, how they communicate and what a good day/week/month should look like that matters. None of this depends on a person’s ability it’s about what matters to them and what makes them tick as the unique individual they are. If we think in this way then everyone fits
G has lots of gifts and talents. He has built in chocolate radar and his ability to hunt down chocolate is very much liked and admired. He has a laugh we’d defy anyone not to find infectious and wicked sense of humour. He always makes us laugh and smile, this is a rare gift in anyone! While the world moves on around him changing its policies, its language and its ideas about what people like him should be doing, he continues to develop at his own pace and moves to his own rhythm. His daily life fits around what he needs and wants and he has no concept that he doesn’t quite fit in or that he’s different from anyone else.
I don’t think of G as a square peg anymore. Once I’d accepted him for who he was I stopped trying to fit him into others idea of what he should be and instead focussed on changing other people’s attitudes and perceptions about him and people like him.
When he was very young teaching him new skills, trying to help him catch up became all consuming. We had a stream of professionals, testing, measuring and comparing him to the norm. Along with the skill of being able to put one brick on top of another one test that was used to measure his development was posting. The early years folks, OT’s and Education psychologists were always trying to get him to post shapes into posting boxes. I watched him once trying desperately to fit the peg in the hole. Whatever way he tried he couldn’t do it so he slid the lid off and then all the pegs fitted. Maybe there’s a lesson there for all of us!