Helen RobinsonThe National Association of Parents of Backward Children was formed in 1946, an organisation we now know as Mencap. First, one of the founder members talks about her experiences of caring for her son with a learning disability, before the advent of the society, and how the society was set up. Brenda Nickson Well my name's Brenda Nickson, and I had my son in 1955, and I was just told that he was a mongol, as they were called in those days, and there would be no future for him. He'd probably die when he was five. He wouldn't probably, well shall I say, he'd probably not live longer than five, and the best thing for us to do was to put him in an institution, which of course ... needless to say, my husband and I were just so horrified, we just picked up our bags and left, and had a good ... well I had a good weep. Of course, I think I spent the first two years crying. And we were just left then. And at that time, of course, nobody acknowledged you to any great extent. My mother-in-law wouldn't acknowledge that there was anything different from Roger that except he had a bad heart. And I was referred to Hammersmith, and he went in for the investigation to see ... X-ray the heart, to see what holes were in it. When we went to collect him, the specialist said that he was very sorry but he couldn't do anything for Roger and, in any case, he would still be a mongol. And it was the last remark that really shook us because we knew perfectly well he was going to be a mongol. That could never be repaired. In those days, the baby clinic was once a month in the village. And the health visitor notified my husband and I that there was going to be a meeting in the town of people interested in setting up a branch of the Society for the Parents of Backward and Handicapped Children, and would we like to go? And I think my son was four months old then, so it was very early on in the circumstances, and we said, “Yes”. I can't remember how many people there were there. I was the only one with a baby. All the others had practically, you know, growing up children. And then the ... so they decided then to form the branch of the society. There was no such thing as respite care or carers, or anything at all. There was just nothing.And so the aim was to see about that ... helping each other, we were ... it was a self-help society, of course ... and to try and get all of them recognised as people. You see, respite care was the culmination of a long effort, because the first sort of respite was having a night out at a club. That was one evening that the parents had without their offspring. And that was the first sort of respite for the parents, to get initiated into letting their children go somewhere where they weren't in charge of them. And that was another thing, you see, and the society ... well the members that ran the society, were adamant that there's no reason for their offspring not to have a club to go and meet, like other children ... other people did ... and have activities of their ... that they could do. Helen Robinson Brenda's husband, Jim, became chairman of the society and, along with other members, he worked hard to improve the facilities and services available to their children. As Fay Bunyan explains, respite for parents and breaks for families were their priorities. Fay Bunyan Whenever parents got together, one need appeared to be ... and it came up time and time again ... was holiday accommodation, where we could take the children. They could have a holiday in private without being stared at, where they could take the other children as well. Many of their children never had a holiday, especially the more handicapped ones. And we fancied a caravan or a holiday chalet ... and eventually Mr Nixon tramped round East Anglia looking for sites ... and he came.up with a site of a chalet in Winterton. And, having got it, he said to me, “You've made more noise than anybody else about this. There it is. You look after it”. So I had the job of furnishing it, with the help of quite a lot of local businesses that were very, very generous. Social services, yes, were a little bit, “It's not going to work and l hope you know what you're doing,” but we ignored those completely. Some parents said they wouldn't use the chalet, and they gradually came round to it. Helen Robinson Brenda is certain that, when it came to establishing provision for parents and children, the voluntary sector laid the ground work for the statutory services. Brenda Nickson A lot of the services that are there now really are developed from the fact that this started as voluntary services. I mean, who would have thought of them putting a swimming pool in Saint John's? I mean, we used to take the boys, you see ... holidays ... and they went swimming. And, naturally, Jim thought, “Why can't we take ... perhaps go swimming with them?” And he got permission to have a swimming session at the college on a Saturday morning, twelve to one, when nobody else wanted it, providing ... we had to supply our own supervision, of course, and everything.And so the aim was to see about that ... helping each other, we were ... it was a self-help society, of course ... and to try and get all of them recognised as people. You see, respite care was the culmination of a long effort, because the first sort of respite was having a night out at a club. That was one evening that the parents had without their offspring. And that was the first sort of respite for the parents, to get initiated into letting their children go somewhere where they weren't in charge of them. And that was another thing, you see, and the society ... well the members that ran the society, were adamant that there's no reason for their offspring not to have a club to go and meet, like other children ... other people did ... and have activities of their ... that they could do. Helen Robinson Brenda's husband, Jim, became chairman of the society and, along with other members, he worked hard to improve the facilities and services available to their children. As Fay Bunyan explains, respite for parents and breaks for families were their priorities. Fay Bunyan Whenever parents got together, one need appeared to be ... and it came up time and time again ... was holiday accommodation, where we could take the children. They could have a holiday in private without being stared at, where they could take the other children as well. Many of their children never had a holiday, especially the more handicapped ones. And we fancied a caravan or a holiday chalet ... and eventually Mr Nixon tramped round East Anglia looking for sites ... and he came.up with a site of a chalet in Winterton. And, having got it, he said to me, “You've made more noise than anybody else about this. There it is. You look after it”. So I had the job of furnishing it, with the help of quite a lot of local businesses that were very, very generous. Social services, yes, were a little bit, “It's not going to work and l hope you know what you're doing,” but we ignored those completely. Some parents said they wouldn't use the chalet, and they gradually came round to it. Helen Robinson Brenda is certain that, when it came to establishing provision for parents and children, the voluntary sector laid the ground work for the statutory services. Brenda Nickson A lot of the services that are there now really are developed from the fact that this started as voluntary services. I mean, who would have thought of them putting a swimming pool in Saint John's? I mean, we used to take the boys, you see ... holidays ... and they went swimming. And, naturally, Jim thought, “Why can't we take ... perhaps go swimming with them?” And he got permission to have a swimming session at the college on a Saturday morning, twelve to one, when nobody else wanted it, providing ... we had to supply our own supervision, of course, and everything.But, when it was first mentioned, I can remember they said, “Good heavens, you're not thinking of taking these sort of children swimming?” That was the attitude. “Who on earth do you think will go to look after them?” It went like a bomb.Clip 2Michael and Anne Tombs talk about how Mencap provoked changes in care provision for people with learning disabilities.
Clip 2
Helen Robinson After they became aware that their son, Sandy, had a learning disability, Anne and Michael Tombs also became involved in Bedfordshire Mencap. They believed the society did provoke changes in care provision for those with learning difficulties.Anne Tombs Yeah, well I think Mencap's been very important, right from the very beginning. I feel that it was pressure from parents, and from parents’ organisations, that led to the complete change we've had in the last fifty ... more than fifty years ... in a time when people just went into an institution, to the position we're in now, where people have rights and have a choice of occupation, and a choice of residential provision. Michael Tombs As it developed, it did get a lot of people involved, whose relatives were in the institutions. I refuse to call them hospitals, because they're not really hospitals at all. They were just institutions. And they took a different view. They felt that, you know, the provisions should be centred round them. They could improve them, they thought, a lot. But they didn't really envisage the complete shift in the basis of provision that did develop eventually. We strongly promoted residential care, and that was enough to alienate a lot of the people with relatives in the hospital, because they didn't want that. Anne Tombs I mean, I think the Education Act in particular was ... is the most important ... and the Chronically Sick and Disabled Persons Act as well. The change from health to social services was all part of that recognition, that there should be services in the community. And I think that was largely because parents were saying, “We want something better for our children, who are in the community, and we don't want them to go into institutions. And we don't think that's the right place for them”. Helen Robinson With the closure of the long stay institutions, people with learning difficulties necessarily achieved a greater visibility in society. But voluntary societies, like Mencap, still found prejudice in health and social care.Michael Tombs One of our members needed a cataract operation, and the local hospital refused to do it ... we were told. And so we quite simply said, “Right, we'll raise the money, have it done privately. We will give this maximum publicity, and we'll march up and down outside the hospital waving banners”. And the hospital, and presumably the consultant in question, just changed their mind. And I believe the operation was carried out fairly quickly. And that was just the watershed. Before that, they wouldn't ... or at least they were extremely careful about admitting people with learning disabilities.Clip 3Helen Robinson talks to Beryl McLennan abut the Welfare Visitors Scheme. We also hear from Kim Bell, who presents the views of younger members of Mencap.