Don’t Cramp My Style A Campaigning Life Simon Cramp Don’t Cramp My Style A Campaigning Life Simon Cramp Contents Dedication ...............................................7 Forewords ................................................11 Chapter 1 About Me ...................................... 15 Chapter 2 Family ......................................... 17 Chapter 3 Early Days ......................................27 Chapter 4 Mencap ........................................ 31 Chapter 5 Dimensions ....................................47 Chapter 6 National Policy ................................53 Chapter 7 Housing ........................................ 65 Chapter 8 Freedom ....................................... 71 Chapter 9 What Next? ....................................77 Chapter 10 Collected Writings ............................. 79 Dedication In Loving Memory of my twin brother, Adrian John Cramp, who died on 21st August 2015. Simon and Adrian My brother (on the right in the photo) was a great bloke who lived life to the full and took on the world at swimming and smashed it in the world of learning disability sport. This is what my dad said about him recently at his funeral: Frustrating, stubborn, grumpy, annoying, irritating, exasperating, delightful, funny, caring, considerate and generous, these are just some words that describe Adrian. A truly complicated man. Adrian was born in Lambeth Hospital in London just after 9am on Sunday 15th August 1971. He was just 8 minutes later than his twin brother Simon. Even their birth was an event, as they were born, not in a delivery room but in the lecture theatre as the birth was being viewed by a number of trainee midwives and doctors who had to see a multiple birth. They were born a month early, and they stopped breathing for about a minute at their birth, and this was the cause of their difficulties. A few days later their Grandpa Gordon described them as two little peaches! When Adrian came home from hospital he was so tiny, less than 2 bags of sugar, that he had to be fed every 3 hours, a process that often took 2 hours, so there wasn’t a lot of sleep taking place. Adrian had a great childhood, and loved playing football and cricket, not very well, but who cares! School was a nightmare; he didn’t always get what he was being taught. Nevertheless he got through it, with a few GCSEs. One of the highlights of his school was when he and Simon were selected to run a stretch of the Queen Baton Relay for the Commonwealth Games. In 1985, family holidays at the seaside usually started with a panic event, losing Adrian. But often he would be found standing, fully clothed and up to his neck in the sea. He couldn’t swim! After school he attended Chesterfield College on a Sports Leader Course, organ sing and taking part in various charity events. This led to him going to a supported employment with a local council, in the Sports Development Department. This was both a joy and trial. Shortly after starting work it was found he couldn’t swim and one of the swimming teachers took him in hand, and Adrian learned to swim. This turned out to be his greatest joy. This led to him being selected to swim in the UK Special Olympics at Cardiff in 2001, as part of the East Midlands Team , gaining a number of silver and bronze medals .He was always rather miffed that a mere fingertip stopped him getting a gold medal. He also represented Great Britain in a swimming gala in Geneva, Switzerland, again gaining a silver medal. Adrian decided that he wanted to gain swimming teachers qualification, but he was told that his employer wouldn’t support him taking the exam as they didn’t think he would be successful. This is where the stubborn part of his character took over. Without saying anything to his employer he took himself off to Skipton in North Yorkshire one weekend, and with a little help by someone reading him the questions, listening to his answers and writing them down, he gained the theory part of the exam. A few weeks later he persuaded me to take him down to Huntingdon where he took the practical exam, again passing. He gained the full certificate and proudly presented it to his manager the following Monday. They paid all his fees shortly afterwards. Due to reorganisation Adrian moved to work in the community based at Ash Green Centre and then at Ringwood Centre. One day he was setting off to work, and whilst on the bus felt a bit unwell. He got off the bus and felt much worse. He had the wherewithal to call an Ambulance, and was found to have suffered a heart attack. It is true to say that this event was the start of Adrian suffering long term health issues. Adrian always seemed to be on a time delay, he was usually about 10 minutes behind everyone else. He had little concept of time. If he had an appointment at 9.30 he would appear at his front door a few minutes before, seemingly not grasping that the journey would take time. His cooking usually ended up under or over cooked as someone else would take his attention, he was a typical man could only do one thing at a time! Adrian needed a lot of help from people and he really did appreciate that help. It may not help always have been obvious as he could moan and groan. He could be quite grumpy but as was commented recently HE WAS OUR GRUMPY ADRIAN. When I phoned him, it was very rare that he would answer. I found out that he would turn his phone onto silent so he wouldn’t be disturbed! Mind you the phone would switch to answer phone and I would be treated to the longest greeting message ever recorded, inviting me to leave a message. Adrian over the past few months had began to lose some of his memory, and often I would get a call from him about something. We would talk about it and decide what to do. However ten minutes later I would receive another call about the same thing. This could happen a few times, and I know that I could get a bit cross, sorry Adrian. He was one of the most generous people I know, he was always willing to offer his family and friends anything he had, and most visitors would often leave clutching a bottle of water he had insisted they take. He was also very vulnerable, and could be taken advantage of through his naivety. He was really pleased when he sat with his niece, Abigail, and taught her to count up to 10, although 8 was always missing. We know that Adrian had many health issues, and unfortunately these had become his main thoughts. Most conversation with him centred on his health, and he had become more and more reluctant to leave his home. He loved to watch the Sports Channels where he could indulge his passions for cricket and Manchester United. He relied heavily on his twin, Simon and the boys had a very close bond. They strived for individuality, but were linked closely. They felt each other’s discomfort, when one was having some form of operation. They would argue and get cross with one another, but of anybody else argued with one of them, the other would support their twin. Adrian was truly a very complicated person; he needed a high degree of maintenance. He wasn’t always logical, and could be difficult to understand. He often didn’t quite get that what he wanted couldn’t always be met straight away. Yet he had a wonderful smile, a cracking sense of humour, a kindness towards people in distress and loyalty to his family and friends. We will always miss him and I think many others will. He is at peace now and we picture him sitting in a better place with the one person he always missed, his Mum. Just one more thing, to paraphrase Spike Milligan, Adrian always told us he was ill and he was. DON’T CRAMP MY STYLE Forewords From David Brindle of The Guardian Thirty years is no time at all in the scheme of things. Yet it seems an altogether different era when you look back to the 1980s and reflect that we were still sending people with learning disabilities to long-stay hospitals as a matter of course. We’ve come a long way since then. It’s easy to forget that when you despair at the state of things: the brutal cuts we have seen in the welfare state to pay for the banking crash a decade ago; the continuing struggle of disabled people to secure their rights as equal citizens; the shocking hate crime that anyone who looks and sounds different is always in danger of suffering. There is, indeed, much to despair about. But here’s a cause of celebration: a book by and about someone born with a learning disability, albeit not especially severe, who was one of the first generation to be not at risk of being consigned to hospital for good and who has gone on to lead a rich, rewarding life and to make an important contribution to the emancipation of disabled people. Simon Cramp is today one of the most well-known figures on the national stage with, as we now say, “lived experience“ of learning disability. He is knowledgeable, articulate and able to hold his own in conversation – occasionally heated discussion – with government officials and ministers. Under the terms of the 1944 Education Act, passed in living memory, he might well have been considered “uneducable”. His book is idiosyncratic, emotional (especially when he discusses his late and beloved twin brother, Adrian) and frankly a touch disorganised.