3 Audio activity
The three clips included in this section are taken from interviews with parents who contributed to the development of the Bedfordshire branch of Mencap.
As you listen to the clips, make notes on why change was needed, and on what pressures for change the speakers mention.
Clip 1
Brenda Nickson, whose son has a learning disability, talks about her own experiences, and about how the organisation was set up.
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Helen Robinson
The 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.
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Clip 2
Michael and Anne Tombs talk about how Mencap provoked changes in care provision for people with learning disabilities.
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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.
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Clip 3
Helen 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.
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Helen Robinson
In order to create greater awareness of people with learning difficulties, it was important for Mencap to disseminate information and create a supportive network of parents. One of its most successful ventures has been the Welfare Visitors Scheme ... thanks in part to committed volunteers like Beryl McLennan.
Beryl McLennan
I think Mr Nixon probably thought there was a need for welfare visitors, because a lot of people didn't come forward to join Mencap. They weren't involved, so there's lots of people out there with children and adults with a handicap that that weren't getting the help and support. I mean, it was obvious social services couldn't personally visit every family with a problem, so he came up with this idea. And he got together with social services. So it wasn't just, you know, him on his own. He did it property with ... we had a member of social services all the way in the planning stage, and everything.
I think it's made a lot of difference, especially as befriending, because a lot of people ... I think sometimes you think you're the only one. You're the only one with a handicapped child or adult. You're the only one, you know, coping. And then you find out there's more. And another way it's helped is with benefits, because a lot of people were not getting their right benefits. They didn't know what benefits they should have, and nobody told them.
Helen Robinson
Beryl recently won an award for long service to the society. She's seen the community she serves change, presenting fresh challenges.
Beryl McLennan
At one time, I don't think I had any Asian families on my list at all. Now I think about ten percent of my list is Asian families. I mean, it did start at Saint John's school. They got a group together to get Asian parents together, because they really felt they were isolated, especially in their community, when they did have a handicapped child. And they asked me to go along as a welfare visitor, to advise on grants and benefits, that type of thing. And that's how I initially got to know families ... Asian families ... and that's many, many years ago, and I'm still visiting them.
Things have changed because we've now got Asian families very much involved. I find that the children ... school age children ... tend to translate, if the mums haven’t got much, you know, English language. But it's all worked out quite well really.
Helen Robinson
The move towards complete integration into the education system and the community has been welcomed by many parents, though some regard these developments with caution.
Anne Tombs
It's going too far with the idea of progressing towards normality because, after all, people have got a learning disability, or a mental handicap, and so they do need a lot of support, and help. And I do think that it's up to the younger parents now, who've perhaps come up with greater expectations to see if those things can work in the future.
Helen Robinson
Younger committee member, Kim Bell, says there's been a definite shift in expectations.
Kim Bell
I do feel that sometimes, at committee level, often it’s views of older people with learning disabilities that are being aired. There's not a lot of new people coming in with younger children. For instance, going back to education, a lot of new parents wish their people ... their children ... to go to school within the local community, whereas the people with older children fought for special schools. And that's what they wanted, but the current law does say that children should be going to their local schools.
Our aim is for Simon to be able to be as independent as possible, living in his own flat with or without a friend, to be able to go off to work two or three days, to go off to college two or three days. Barnfield College gives a good service every Friday. He goes now with his friend. So he has his leisure, his social activities, as well as an independent but useful life. He does have a lot to offer.
Helen Robinson
And terminology also provokes debate between the generations.
Kim Bell
I think it was last year, they had their fiftieth anniversary. And I had hoped ... as a parent ... that they would take that year to change their name because Mencap ... we all know what Mencap, you know, stems from, and I just think it's the wrong impression. Mentally handicapped is not what we want to hear. And, if you listen to client groups - people with learning disabilities who meet together - they don't want that term either.
Helen Robinson
Mencap's aspiration have developed and moved on. Founder member, Brenda Nickson, hopes this process will continue.
Brenda Nickson
It's only the people involved in the problems that can see ways ahead. And, as new ideas come, I hope that they will be accepted. You see, the whole attitude of the world of ... of the approach is so ... has jumped so much you know, that I just hope that it goes on.
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