| | |
| | |
 | You and Yours - Transcript BBC Radio 4 |
| |
| Print This Page |
| |
| |
| TX: 13.11.06 - Mencap PRESENTER:JOHN WAITE |
| |
| Downloaded from www.bbc.co.uk/radio4 THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY. WAITE Today mark's the 60th anniversary of Mencap, one of Britain's leading charities for people with learning disabilities. An organisation started back in 1946 by a mother whose little girl had a learning disability and was therefore rejected by her primary school on her very first day there as being too out of place, too unsuitable for mainstream education. A letter to the press, by that mother, revealed hundreds of other parents who were in a similar position. Well together the families formed an organisation which went on to acquire the Queen Mother as its patron and to become known as the Royal Mencap Society or Mencap as we know it today. Well Philippa Russell is a member of the Learning Disability Task Force and herself a parent of a son with a learning disability and she's been telling us more about the history of Mencap. RUSSELL In 1946 Judy Fryd, who was a formidable parent campaigner and the founder of Mencap, wrote a letter to Nursery World and she said: "It would seem that the idea of forming an association of parents with backward children fulfils a great need. The letters I have received make heartbreaking reading. If expert care and special education for these children were available we should often not be faced the problem of providing lifelong support to a person who could and should be able to make some contribution, however small, towards his own keep." This was of course the year after the war had ended and there was a lot of questioning of the social policies that had gone before. Services of course were very limited for people with learning disabilities and their families. Very often institutional care was seen as the only option and there was very little attempt to support children and families in the community. ARCHIVE These children are mentally handicapped. They are of all ages. There are more than 26,000 such children in England and Wales alone. How can we best look after these children? Is it possible to develop their potentialities, to arouse them, to give them some interest in life. MABLE Instead of sitting in the ward all the time you'd go and stand or sit by the gate and people just used to stand there and laugh at us. ARCHIVE Ward life and education are separate. These children have come from their wards to the training centre where teachers take over. Bead threading is liked by most children. MABLE They had the school there but because they say I couldn't learn they only made baskets and puzzles and doing colouring but they didn't teach you to read or any of that, like you've been taught. RUSSELL Mable's comments make very sad hearing but they're typical of the time because many parents were told that the best thing they could do was to put their child away and forget him. And many parents did not have the confidence or the support to keep their child in the community. In the 1950s and 1960s educational opportunities were very, very limited, the junior training centres were designed to impart a few very basic skills but they were not what we would now regard as educational opportunities for children. ARCHIVE Round about the age of 12 or 13 classrooms become a little more formal at this centre. As most of these children will be given the opportunity to go to a senior training centre when they are 16 or 17 their training at the junior centre inevitably becomes more and more concerned with the development of manual dexterity to fit them for the work they will be taught to carry out there. RUSSELL My family and I came back from living in Central Africa in 1968. Our son Simon had been diagnosed as having a learning disability and we thought we were bringing him back to some really good educational opportunities. We were therefore devastated to realise that in fact he was regarded as ineducable - the 1944 Education Act had seen to that. And the Inner London Education Authority was obliged to send us a letter with a glowing red sentence in it to say that Simon was ineducable and there was no point in registering at a local primary school. We were lucky, in our London borough the then medical officer of health thought this was a nonsense and paid for education from the health budget, hardly possible now. But in many other areas the junior training centre was the only option. In the 1970s there was emerging interest in the importance of early education for the development of children with learning disabilities but provision was very patchy and parents had to do a lot of the work themselves. In Camden a group of parents under the umbrella of Mencap set up their own nursery, we housed it in the rather grand sitting room of a Hampstead House of a grandparent of a young lad in the group. Our long term ambition, which we achieved, was to move the nursery and co-locate it within a brand new day nursery in the borough, so that our children could mix with, learn from and learn alongside other children in the area. Dr Ludlow, of course, had a similar idea. ARCHIVE Mentally retarded children are playing and interacting with normal children at this nursery group. Dr Ludlow was directly responsible for creating this nursery group. We do encourage mothers to bring young siblings that are normal and we also have a number of voluntary helpers who come to the clinic with their own normal children in order that we may have normal children and handicapped children mix together and integrate in. RUSSELL Of course the progress that was made with the 1970 Education Act and the development of some very good early years in school services made everybody think - what next. And Mencap broke new ground when it opened Pengwern Hall because not only did it focus on independent living and the acquisition of life skills but it demonstrated that people with learning disabilities could actually do useful jobs in the community. ARCHIVE Many mentally handicapped young people never have a chance to become independent but at Pengwern Hall near Rhyl the national society is changing this. And now in a flat in St Asaph five young people are living entirely on their own, finding out at first hand what it means to be independent. The boys, Gary and Richard, who both have low IQs and have had few opportunities before, work all day down at the local bowling green, an arrangement, which by all accounts, has been a success for all concerned. For the girls the society has taken over a grocery shop in the middle of the town where they can work and where they have the opportunity to meet local people. RUSSELL My son, of course, was very fortunate in going to Lufton Manor, which was Mencap's rural training college. And it made a huge difference to him. He went to college like his brother and sister went to university, he acquired useful vocational skills and he acquired the confidence to be a young adult in his own right. He is now living in his own home, he owns a house with a mortgage, he does need a good deal of support but he gets it from a good organisation and from very good support workers. And he spends a lot of his time at the AldingBourne Centre in West Sussex where he's been able to use and to really enjoy using his horticultural skills which he acquired at Lufton. His big ambition now is that he wants to set up his mini business under the umbrella of AldingBourne, growing and selling herbs for the local restaurateurs and local gourmets, it's an ambition I never thought he would have back in the sixties but he like other people with learning disabilities expects a very different future at the beginning of the 21st Century. WAITE Philippa Russell looking back over 60 years of Mencap. And you might like to know there's a DVD and a new book All About Us, published to coincide with that 60th anniversary. Well with us in the studio someone who's been associated with the charity Mencap for more than 40 of those years, the current president of Mencap Lord Brian Rix, well known actor/manager of the Whitehall Theatre for many years and star of stage, screen and TV until he turned to helping run Mencap full time. Why was that Brian, how did you first get involved? RIX Well I first got involved really by mistake with the wrong charity. Our daughter with Down's Syndrome was born in 1951 when of course, as you've just heard, there were absolutely no services whatsoever - no education, no welfare, no government support of any kind - and we first of all joined the Stars Organisation for Spastics, which of course was the wrong organisation but we had not heard of the Association of Parents with Backward Children, as Mencap was then called. And - well I became the first treasurer of that and then the third chairman after Wilfred Pickles and Vera Lynn. Then the Secretary General of Mencap, George Lee, tapped me on the shoulder one day and said you with the wrong society, better come over to ours, which had then become the National Society for Mentally Handicapped Children. And so off I went and became the chairman of the first fundraising committee, special functions committee of Mencap. And it was extraordinary because I used to hold the meetings - committee meetings - on the stage between the matinee and the evening performance of One For The Pot, clad in my rather short dressing gown, surrounded by bank managers and solicitors and rather grand ladies and things like that, with full stage makeup on as well. WAITE Some of the first funds that you raised you put into holiday homes, didn't you, because children with Down's or whatever it was weren't welcome in hotels. RIX Well that's right, in fact I was involved with three holiday homes - one for the Stars Organisation for Spastics, one for Friends of Normansfield at Selsey Bill and one for Mencap, then the National Society, at Dymchurch called Pirates Spring. The reason being of course that anyone with a learning disability if they went near a hotel or a boarding house frankly the door was slammed in their face. So we had to buy holiday homes to give them holidays. But of course all that's gone by the by. Although as recently as 20 years ago Tynemouth turned its back on people with learning disabilities, there was a huge row, and that's only in 1986. WAITE Well the other story I'd like you to just briefly tell us is you were asked to go public with the fact that you have a daughter, your daughter Shelly, had Down's Syndrome and what happened, what was the press reaction when you as it were confessed this, because that's how it was seen wasn't it? RIX Well that was the wording that was used. I actually was asked again by George Lee to speak to a crowd of about 2,000 people in Central Hall by Westminster in London. And then I went on to a matinee for the first house, a Saturday, and at 3 o'clock I stood up and told them that I had a daughter with Down's Syndrome. And next day the papers came out with Brian Rix Confesses, Brian Rix Admits - in other words it was a shameful thing to which I had admitted, which of course was rubbish. But George wanted that - George Lee wanted that, he wanted the publicity and he wanted to, as it were, shock people into realising that anybody in the population was likely to have a learning disabled son or daughter. WAITE Well not everyone, Brian, is convinced that Mencap has got it right over the years, when it comes to providing what those with learning disabilities really want. I've been speaking this morning to Andrew Lee, who's director of People First, a self advocacy organisation run by people with learning disabilities. LEE The trouble with Mencap is it's too parent led and the decisions, if you want to call them that, that people with learning difficulties are involved with, are not acted upon, listened to, the assembly is just a side show. WAITE So when you say it's too parent led, what you mean is you would like to see more people with learning disabilities involved in the decision making process? LEE Ideally I'd like to see them making the decisions and the parents not. WAITE And you say that it's not effective, this is the national assembly, the sort of parliament of Mencap, that's toothless is it? LEE Yeah the decisions that they actually take aren't actually acted on but they need to say well we are involving people with learning difficulties. WAITE And what about the name, because I think you find that offensive? LEE It is, it refers to a bygone era. WAITE This is using the word mental? LEE It refers to mental handicap, the name is hated amongst people with learning difficulties and I think that it implies that medical model of looking at disability rather than the social model which People First actually believes in. WAITE So is it time to get rid of Mencap or does it need to be drastically overhauled, what do you think? LEE I think that Mencap actually needs to choose - it either represents parents and carers but it can't actually represent parents, carers and people with learning difficulties, the views are too far gone and they need to choose, they've been holding this debate for too long now and now's the time for action not words. WAITE Well Brian Rix, Andrew Lee says more action fewer words, what do you say? RIX Well of course I totally disagree with him. To begin with the national assembly is not just a talking shop, there are over 50% of people on the national assembly and all our local councils are people with learning disabilities who are not just there as tokenism, they're there to actually voice their opinions and to actually push Mencap forward in whatever area it goes on. WAITE What do you think? RIX As far as the title is concerned, again the national assembly debated this and over 50%, again with people with learning disabilities, realised that to throw away the title - Mencap - the acronym Mencap - would be disastrous financially and they voted to keep it. But on the other hand since that vote took place a bill has gone through, it's now an act, the Mental Capacity Act, so you can now say that the word Mencap actually stands for Mental Capacity which has been granted to people with a learning disability. WAITE Over these 60 years Brian what do you think are Mencap's greatest achievements? RIX Well I think actually the inclusion of people with learning disability, both as employees and as - on the national assembly was a huge step forward. But that all took place in 1998, so it's had eight years already running and therefore it's going well. But there are so many achievements - housing, leisure, employment, transport, welfare - everything has been touched upon and moved forward by Mencap over the last 60 years. WAITE And just finally, I mean now you have a grandson with Down's Syndrome, how different is society today for him, just briefly, compared to the one that your daughter was born into in the early 1950s? RIX Well he's just a lad who was born into the community and he goes to the primary school and he hopefully will continue with his education through the mainstream schooling and then he may be will go to Lufton or Pengwern or Dilston and then get a job which suits him in the future. WAITE And that's the greatest achievement of all isn't it? RIX Of course, of course. WAITE Lord Brian Rix, 60 years of Mencap, many happy returns, thank you very much indeed. WAITE Today mark's the 60th anniversary of Mencap, one of Britain's leading charities for people with learning disabilities. An organisation started back in 1946 by a mother whose little girl had a learning disability and was therefore rejected by her primary school on her very first day there as being too out of place, too unsuitable for mainstream education. A letter to the press, by that mother, revealed hundreds of other parents who were in a similar position. Well together the families formed an organisation which went on to acquire the Queen Mother as its patron and to become known as the Royal Mencap Society or Mencap as we know it today. Well Philippa Russell is a member of the Learning Disability Task Force and herself a parent of a son with a learning disability and she's been telling us more about the history of Mencap. RUSSELL In 1946 Judy Fryd, who was a formidable parent campaigner and the founder of Mencap, wrote a letter to Nursery World and she said: "It would seem that the idea of forming an association of parents with backward children fulfils a great need. The letters I have received make heartbreaking reading. If expert care and special education for these children were available we should often not be faced the problem of providing lifelong support to a person who could and should be able to make some contribution, however small, towards his own keep." This was of course the year after the war had ended and there was a lot of questioning of the social policies that had gone before. Services of course were very limited for people with learning disabilities and their families. Very often institutional care was seen as the only option and there was very little attempt to support children and families in the community. ARCHIVE These children are mentally handicapped. They are of all ages. There are more than 26,000 such children in England and Wales alone. How can we best look after these children? Is it possible to develop their potentialities, to arouse them, to give them some interest in life. MABLE Instead of sitting in the ward all the time you'd go and stand or sit by the gate and people just used to stand there and laugh at us. ARCHIVE Ward life and education are separate. These children have come from their wards to the training centre where teachers take over. Bead threading is liked by most children. MABLE They had the school there but because they say I couldn't learn they only made baskets and puzzles and doing colouring but they didn't teach you to read or any of that, like you've been taught. RUSSELL Mable's comments make very sad hearing but they're typical of the time because many parents were told that the best thing they could do was to put their child away and forget him. And many parents did not have the confidence or the support to keep their child in the community. In the 1950s and 1960s educational opportunities were very, very limited, the junior training centres were designed to impart a few very basic skills but they were not what we would now regard as educational opportunities for children. ARCHIVE Round about the age of 12 or 13 classrooms become a little more formal at this centre. As most of these children will be given the opportunity to go to a senior training centre when they are 16 or 17 their training at the junior centre inevitably becomes more and more concerned with the development of manual dexterity to fit them for the work they will be taught to carry out there. RUSSELL My family and I came back from living in Central Africa in 1968. Our son Simon had been diagnosed as having a learning disability and we thought we were bringing him back to some really good educational opportunities. We were therefore devastated to realise that in fact he was regarded as ineducable - the 1944 Education Act had seen to that. And the Inner London Education Authority was obliged to send us a letter with a glowing red sentence in it to say that Simon was ineducable and there was no point in registering at a local primary school. We were lucky, in our London borough the then medical officer of health thought this was a nonsense and paid for education from the health budget, hardly possible now. But in many other areas the junior training centre was the only option. In the 1970s there was emerging interest in the importance of early education for the development of children with learning disabilities but provision was very patchy and parents had to do a lot of the work themselves. In Camden a group of parents under the umbrella of Mencap set up their own nursery, we housed it in the rather grand sitting room of a Hampstead House of a grandparent of a young lad in the group. Our long term ambition, which we achieved, was to move the nursery and co-locate it within a brand new day nursery in the borough, so that our children could mix with, learn from and learn alongside other children in the area. Dr Ludlow, of course, had a similar idea. ARCHIVE Mentally retarded children are playing and interacting with normal children at this nursery group. Dr Ludlow was directly responsible for creating this nursery group. We do encourage mothers to bring young siblings that are normal and we also have a number of voluntary helpers who come to the clinic with their own normal children in order that we may have normal children and handicapped children mix together and integrate in. RUSSELL Of course the progress that was made with the 1970 Education Act and the development of some very good early years in school services made everybody think - what next. And Mencap broke new ground when it opened Pengwern Hall because not only did it focus on independent living and the acquisition of life skills but it demonstrated that people with learning disabilities could actually do useful jobs in the community. ARCHIVE Many mentally handicapped young people never have a chance to become independent but at Pengwern Hall near Rhyl the national society is changing this. And now in a flat in St Asaph five young people are living entirely on their own, finding out at first hand what it means to be independent. The boys, Gary and Richard, who both have low IQs and have had few opportunities before, work all day down at the local bowling green, an arrangement, which by all accounts, has been a success for all concerned. For the girls the society has taken over a grocery shop in the middle of the town where they can work and where they have the opportunity to meet local people. RUSSELL My son, of course, was very fortunate in going to Lufton Manor, which was Mencap's rural training college. And it made a huge difference to him. He went to college like his brother and sister went to university, he acquired useful vocational skills and he acquired the confidence to be a young adult in his own right. He is now living in his own home, he owns a house with a mortgage, he does need a good deal of support but he gets it from a good organisation and from very good support workers. And he spends a lot of his time at the AldingBourne Centre in West Sussex where he's been able to use and to really enjoy using his horticultural skills which he acquired at Lufton. His big ambition now is that he wants to set up his mini business under the umbrella of AldingBourne, growing and selling herbs for the local restaurateurs and local gourmets, it's an ambition I never thought he would have back in the sixties but he like other people with learning disabilities expects a very different future at the beginning of the 21st Century. WAITE Philippa Russell looking back over 60 years of Mencap. And you might like to know there's a DVD and a new book All About Us, published to coincide with that 60th anniversary. Well with us in the studio someone who's been associated with the charity Mencap for more than 40 of those years, the current president of Mencap Lord Brian Rix, well known actor/manager of the Whitehall Theatre for many years and star of stage, screen and TV until he turned to helping run Mencap full time. Why was that Brian, how did you first get involved? RIX Well I first got involved really by mistake with the wrong charity. Our daughter with Down's Syndrome was born in 1951 when of course, as you've just heard, there were absolutely no services whatsoever - no education, no welfare, no government support of any kind - and we first of all joined the Stars Organisation for Spastics, which of course was the wrong organisation but we had not heard of the Association of Parents with Backward Children, as Mencap was then called. And - well I became the first treasurer of that and then the third chairman after Wilfred Pickles and Vera Lynn. Then the Secretary General of Mencap, George Lee, tapped me on the shoulder one day and said you with the wrong society, better come over to ours, which had then become the National Society for Mentally Handicapped Children. And so off I went and became the chairman of the first fundraising committee, special functions committee of Mencap. And it was extraordinary because I used to hold the meetings - committee meetings - on the stage between the matinee and the evening performance of One For The Pot, clad in my rather short dressing gown, surrounded by bank managers and solicitors and rather grand ladies and things like that, with full stage makeup on as well. WAITE Some of the first funds that you raised you put into holiday homes, didn't you, because children with Down's or whatever it was weren't welcome in hotels. RIX Well that's right, in fact I was involved with three holiday homes - one for the Stars Organisation for Spastics, one for Friends of Normansfield at Selsey Bill and one for Mencap, then the National Society, at Dymchurch called Pirates Spring. The reason being of course that anyone with a learning disability if they went near a hotel or a boarding house frankly the door was slammed in their face. So we had to buy holiday homes to give them holidays. But of course all that's gone by the by. Although as recently as 20 years ago Tynemouth turned its back on people with learning disabilities, there was a huge row, and that's only in 1986. WAITE Well the other story I'd like you to just briefly tell us is you were asked to go public with the fact that you have a daughter, your daughter Shelly, had Down's Syndrome and what happened, what was the press reaction when you as it were confessed this, because that's how it was seen wasn't it? RIX Well that was the wording that was used. I actually was asked again by George Lee to speak to a crowd of about 2,000 people in Central Hall by Westminster in London. And then I went on to a matinee for the first house, a Saturday, and at 3 o'clock I stood up and told them that I had a daughter with Down's Syndrome. And next day the papers came out with Brian Rix Confesses, Brian Rix Admits - in other words it was a shameful thing to which I had admitted, which of course was rubbish. But George wanted that - George Lee wanted that, he wanted the publicity and he wanted to, as it were, shock people into realising that anybody in the population was likely to have a learning disabled son or daughter. WAITE Well not everyone, Brian, is convinced that Mencap has got it right over the years, when it comes to providing what those with learning disabilities really want. I've been speaking this morning to Andrew Lee, who's director of People First, a self advocacy organisation run by people with learning disabilities. LEE The trouble with Mencap is it's too parent led and the decisions, if you want to call them that, that people with learning difficulties are involved with, are not acted upon, listened to, the assembly is just a side show. WAITE So when you say it's too parent led, what you mean is you would like to see more people with learning disabilities involved in the decision making process? LEE Ideally I'd like to see them making the decisions and the parents not. WAITE And you say that it's not effective, this is the national assembly, the sort of parliament of Mencap, that's toothless is it? LEE Yeah the decisions that they actually take aren't actually acted on but they need to say well we are involving people with learning difficulties. WAITE And what about the name, because I think you find that offensive? LEE It is, it refers to a bygone era. WAITE This is using the word mental? LEE It refers to mental handicap, the name is hated amongst people with learning difficulties and I think that it implies that medical model of looking at disability rather than the social model which People First actually believes in. WAITE So is it time to get rid of Mencap or does it need to be drastically overhauled, what do you think? LEE I think that Mencap actually needs to choose - it either represents parents and carers but it can't actually represent parents, carers and people with learning difficulties, the views are too far gone and they need to choose, they've been holding this debate for too long now and now's the time for action not words. WAITE Well Brian Rix, Andrew Lee says more action fewer words, what do you say? RIX Well of course I totally disagree with him. To begin with the national assembly is not just a talking shop, there are over 50% of people on the national assembly and all our local councils are people with learning disabilities who are not just there as tokenism, they're there to actually voice their opinions and to actually push Mencap forward in whatever area it goes on. WAITE What do you think? RIX As far as the title is concerned, again the national assembly debated this and over 50%, again with people with learning disabilities, realised that to throw away the title - Mencap - the acronym Mencap - would be disastrous financially and they voted to keep it. But on the other hand since that vote took place a bill has gone through, it's now an act, the Mental Capacity Act, so you can now say that the word Mencap actually stands for Mental Capacity which has been granted to people with a learning disability. WAITE Over these 60 years Brian what do you think are Mencap's greatest achievements? RIX Well I think actually the inclusion of people with learning disability, both as employees and as - on the national assembly was a huge step forward. But that all took place in 1998, so it's had eight years already running and therefore it's going well. But there are so many achievements - housing, leisure, employment, transport, welfare - everything has been touched upon and moved forward by Mencap over the last 60 years. WAITE And just finally, I mean now you have a grandson with Down's Syndrome, how different is society today for him, just briefly, compared to the one that your daughter was born into in the early 1950s? RIX Well he's just a lad who was born into the community and he goes to the primary school and he hopefully will continue with his education through the mainstream schooling and then he may be will go to Lufton or Pengwern or Dilston and then get a job which suits him in the future. WAITE And that's the greatest achievement of all isn't it? RIX Of course, of course. WAITE Lord Brian Rix, 60 years of Mencap, many happy returns, thank you very much indeed. WAITE Today mark's the 60th anniversary of Mencap, one of Britain's leading charities for people with learning disabilities. An organisation started back in 1946 by a mother whose little girl had a learning disability and was therefore rejected by her primary school on her very first day there as being too out of place, too unsuitable for mainstream education. A letter to the press, by that mother, revealed hundreds of other parents who were in a similar position. Well together the families formed an organisation which went on to acquire the Queen Mother as its patron and to become known as the Royal Mencap Society or Mencap as we know it today. Well Philippa Russell is a member of the Learning Disability Task Force and herself a parent of a son with a learning disability and she's been telling us more about the history of Mencap. RUSSELL In 1946 Judy Fryd, who was a formidable parent campaigner and the founder of Mencap, wrote a letter to Nursery World and she said: "It would seem that the idea of forming an association of parents with backward children fulfils a great need. The letters I have received make heartbreaking reading. If expert care and special education for these children were available we should often not be faced the problem of providing lifelong support to a person who could and should be able to make some contribution, however small, towards his own keep." This was of course the year after the war had ended and there was a lot of questioning of the social policies that had gone before. Services of course were very limited for people with learning disabilities and their families. Very often institutional care was seen as the only option and there was very little attempt to support children and families in the community. ARCHIVE These children are mentally handicapped. They are of all ages. There are more than 26,000 such children in England and Wales alone. How can we best look after these children? Is it possible to develop their potentialities, to arouse them, to give them some interest in life. MABLE Instead of sitting in the ward all the time you'd go and stand or sit by the gate and people just used to stand there and laugh at us. ARCHIVE Ward life and education are separate. These children have come from their wards to the training centre where teachers take over. Bead threading is liked by most children. MABLE They had the school there but because they say I couldn't learn they only made baskets and puzzles and doing colouring but they didn't teach you to read or any of that, like you've been taught. RUSSELL Mable's comments make very sad hearing but they're typical of the time because many parents were told that the best thing they could do was to put their child away and forget him. And many parents did not have the confidence or the support to keep their child in the community. In the 1950s and 1960s educational opportunities were very, very limited, the junior training centres were designed to impart a few very basic skills but they were not what we would now regard as educational opportunities for children. ARCHIVE Round about the age of 12 or 13 classrooms become a little more formal at this centre. As most of these children will be given the opportunity to go to a senior training centre when they are 16 or 17 their training at the junior centre inevitably becomes more and more concerned with the development of manual dexterity to fit them for the work they will be taught to carry out there. RUSSELL My family and I came back from living in Central Africa in 1968. Our son Simon had been diagnosed as having a learning disability and we thought we were bringing him back to some really good educational opportunities. We were therefore devastated to realise that in fact he was regarded as ineducable - the 1944 Education Act had seen to that. And the Inner London Education Authority was obliged to send us a letter with a glowing red sentence in it to say that Simon was ineducable and there was no point in registering at a local primary school. We were lucky, in our London borough the then medical officer of health thought this was a nonsense and paid for education from the health budget, hardly possible now. But in many other areas the junior training centre was the only option. In the 1970s there was emerging interest in the importance of early education for the development of children with learning disabilities but provision was very patchy and parents had to do a lot of the work themselves. In Camden a group of parents under the umbrella of Mencap set up their own nursery, we housed it in the rather grand sitting room of a Hampstead House of a grandparent of a young lad in the group. Our long term ambition, which we achieved, was to move the nursery and co-locate it within a brand new day nursery in the borough, so that our children could mix with, learn from and learn alongside other children in the area. Dr Ludlow, of course, had a similar idea. ARCHIVE Mentally retarded children are playing and interacting with normal children at this nursery group. Dr Ludlow was directly responsible for creating this nursery group. We do encourage mothers to bring young siblings that are normal and we also have a number of voluntary helpers who come to the clinic with their own normal children in order that we may have normal children and handicapped children mix together and integrate in. RUSSELL Of course the progress that was made with the 1970 Education Act and the development of some very good early years in school services made everybody think - what next. And Mencap broke new ground when it opened Pengwern Hall because not only did it focus on independent living and the acquisition of life skills but it demonstrated that people with learning disabilities could actually do useful jobs in the community. ARCHIVE Many mentally handicapped young people never have a chance to become independent but at Pengwern Hall near Rhyl the national society is changing this. And now in a flat in St Asaph five young people are living entirely on their own, finding out at first hand what it means to be independent. The boys, Gary and Richard, who both have low IQs and have had few opportunities before, work all day down at the local bowling green, an arrangement, which by all accounts, has been a success for all concerned. For the girls the society has taken over a grocery shop in the middle of the town where they can work and where they have the opportunity to meet local people. RUSSELL My son, of course, was very fortunate in going to Lufton Manor, which was Mencap's rural training college. And it made a huge difference to him. He went to college like his brother and sister went to university, he acquired useful vocational skills and he acquired the confidence to be a young adult in his own right. He is now living in his own home, he owns a house with a mortgage, he does need a good deal of support but he gets it from a good organisation and from very good support workers. And he spends a lot of his time at the AldingBourne Centre in West Sussex where he's been able to use and to really enjoy using his horticultural skills which he acquired at Lufton. His big ambition now is that he wants to set up his mini business under the umbrella of AldingBourne, growing and selling herbs for the local restaurateurs and local gourmets, it's an ambition I never thought he would have back in the sixties but he like other people with learning disabilities expects a very different future at the beginning of the 21st Century. WAITE Philippa Russell looking back over 60 years of Mencap. And you might like to know there's a DVD and a new book All About Us, published to coincide with that 60th anniversary. Well with us in the studio someone who's been associated with the charity Mencap for more than 40 of those years, the current president of Mencap Lord Brian Rix, well known actor/manager of the Whitehall Theatre for many years and star of stage, screen and TV until he turned to helping run Mencap full time. Why was that Brian, how did you first get involved? RIX Well I first got involved really by mistake with the wrong charity. Our daughter with Down's Syndrome was born in 1951 when of course, as you've just heard, there were absolutely no services whatsoever - no education, no welfare, no government support of any kind - and we first of all joined the Stars Organisation for Spastics, which of course was the wrong organisation but we had not heard of the Association of Parents with Backward Children, as Mencap was then called. And - well I became the first treasurer of that and then the third chairman after Wilfred Pickles and Vera Lynn. Then the Secretary General of Mencap, George Lee, tapped me on the shoulder one day and said you with the wrong society, better come over to ours, which had then become the National Society for Mentally Handicapped Children. And so off I went and became the chairman of the first fundraising committee, special functions committee of Mencap. And it was extraordinary because I used to hold the meetings - committee meetings - on the stage between the matinee and the evening performance of One For The Pot, clad in my rather short dressing gown, surrounded by bank managers and solicitors and rather grand ladies and things like that, with full stage makeup on as well. WAITE Some of the first funds that you raised you put into holiday homes, didn't you, because children with Down's or whatever it was weren't welcome in hotels. RIX Well that's right, in fact I was involved with three holiday homes - one for the Stars Organisation for Spastics, one for Friends of Normansfield at Selsey Bill and one for Mencap, then the National Society, at Dymchurch called Pirates Spring. The reason being of course that anyone with a learning disability if they went near a hotel or a boarding house frankly the door was slammed in their face. So we had to buy holiday homes to give them holidays. But of course all that's gone by the by. Although as recently as 20 years ago Tynemouth turned its back on people with learning disabilities, there was a huge row, and that's only in 1986. WAITE Well the other story I'd like you to just briefly tell us is you were asked to go public with the fact that you have a daughter, your daughter Shelly, had Down's Syndrome and what happened, what was the press reaction when you as it were confessed this, because that's how it was seen wasn't it? RIX Well that was the wording that was used. I actually was asked again by George Lee to speak to a crowd of about 2,000 people in Central Hall by Westminster in London. And then I went on to a matinee for the first house, a Saturday, and at 3 o'clock I stood up and told them that I had a daughter with Down's Syndrome. And next day the papers came out with Brian Rix Confesses, Brian Rix Admits - in other words it was a shameful thing to which I had admitted, which of course was rubbish. But George wanted that - George Lee wanted that, he wanted the publicity and he wanted to, as it were, shock people into realising that anybody in the population was likely to have a learning disabled son or daughter. WAITE Well not everyone, Brian, is convinced that Mencap has got it right over the years, when it comes to providing what those with learning disabilities really want. I've been speaking this morning to Andrew Lee, who's director of People First, a self advocacy organisation run by people with learning disabilities. LEE The trouble with Mencap is it's too parent led and the decisions, if you want to call them that, that people with learning difficulties are involved with, are not acted upon, listened to, the assembly is just a side show. WAITE So when you say it's too parent led, what you mean is you would like to see more people with learning disabilities involved in the decision making process? LEE Ideally I'd like to see them making the decisions and the parents not. WAITE And you say that it's not effective, this is the national assembly, the sort of parliament of Mencap, that's toothless is it? LEE Yeah the decisions that they actually take aren't actually acted on but they need to say well we are involving people with learning difficulties. WAITE And what about the name, because I think you find that offensive? LEE It is, it refers to a bygone era. WAITE This is using the word mental? LEE It refers to mental handicap, the name is hated amongst people with learning difficulties and I think that it implies that medical model of looking at disability rather than the social model which People First actually believes in. WAITE So is it time to get rid of Mencap or does it need to be drastically overhauled, what do you think? LEE I think that Mencap actually needs to choose - it either represents parents and carers but it can't actually represent parents, carers and people with learning difficulties, the views are too far gone and they need to choose, they've been holding this debate for too long now and now's the time for action not words. WAITE Well Brian Rix, Andrew Lee says more action fewer words, what do you say? RIX Well of course I totally disagree with him. To begin with the national assembly is not just a talking shop, there are over 50% of people on the national assembly and all our local councils are people with learning disabilities who are not just there as tokenism, they're there to actually voice their opinions and to actually push Mencap forward in whatever area it goes on. WAITE What do you think? RIX As far as the title is concerned, again the national assembly debated this and over 50%, again with people with learning disabilities, realised that to throw away the title - Mencap - the acronym Mencap - would be disastrous financially and they voted to keep it. But on the other hand since that vote took place a bill has gone through, it's now an act, the Mental Capacity Act, so you can now say that the word Mencap actually stands for Mental Capacity which has been granted to people with a learning disability. WAITE Over these 60 years Brian what do you think are Mencap's greatest achievements? RIX Well I think actually the inclusion of people with learning disability, both as employees and as - on the national assembly was a huge step forward. But that all took place in 1998, so it's had eight years already running and therefore it's going well. But there are so many achievements - housing, leisure, employment, transport, welfare - everything has been touched upon and moved forward by Mencap over the last 60 years. WAITE And just finally, I mean now you have a grandson with Down's Syndrome, how different is society today for him, just briefly, compared to the one that your daughter was born into in the early 1950s? RIX Well he's just a lad who was born into the community and he goes to the primary school and he hopefully will continue with his education through the mainstream schooling and then he may be will go to Lufton or Pengwern or Dilston and then get a job which suits him in the future. WAITE And that's the greatest achievement of all isn't it? RIX Of course, of course. WAITE Lord Brian Rix, 60 years of Mencap, many happy returns, thank you very much indeed. Back to the You and Yours homepage The BBC is not responsible for external websites |
| About the BBC | Help | Terms of Use | Privacy & Cookies Policy |
