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Rosa Monckton: the unlikely disability activist Rosa Monckton: the unlikely disability activist
(5 months later)
Rosa Monckton spent many weeks bringing together parents of children with severe learning disabilities for a seminar in the House of Commons late last month. She arranged for the minister for disabled people, Esther McVey, and the children and families minister, Edward Timpson, to listen to the problems they face. Yet Monckton, who is emerging as a serious campaigner on disability, describes the occasion as a "farce".Rosa Monckton spent many weeks bringing together parents of children with severe learning disabilities for a seminar in the House of Commons late last month. She arranged for the minister for disabled people, Esther McVey, and the children and families minister, Edward Timpson, to listen to the problems they face. Yet Monckton, who is emerging as a serious campaigner on disability, describes the occasion as a "farce".
Around 40 parents (most of them mothers) from all over the country came to speak about the difficulties they had arranging respite care, support and proper education for their children.Around 40 parents (most of them mothers) from all over the country came to speak about the difficulties they had arranging respite care, support and proper education for their children.
Timpson attended the meeting at the start, told parents how valuable the occasion was as an opportunity for him to learn about their concerns, and left shortly afterwards. McVey arrived a few minutes before the end of the session, after most of the parents had finished speaking, and apologised for having missed the meeting and said very little else before leaving.Timpson attended the meeting at the start, told parents how valuable the occasion was as an opportunity for him to learn about their concerns, and left shortly afterwards. McVey arrived a few minutes before the end of the session, after most of the parents had finished speaking, and apologised for having missed the meeting and said very little else before leaving.
"We really wanted the ministers to listen," says Monckton. "It was a complete disgrace that they didn't. I wanted them to listen and understand from the parents directly: this is what it is like, this is what your policies are doing, this is what needs changing. I think it is insulting. If any mother in that room needed it to be confirmed how low down in the food chain this issue is, that confirmed it," she says. "There was palpable anger in the room.""We really wanted the ministers to listen," says Monckton. "It was a complete disgrace that they didn't. I wanted them to listen and understand from the parents directly: this is what it is like, this is what your policies are doing, this is what needs changing. I think it is insulting. If any mother in that room needed it to be confirmed how low down in the food chain this issue is, that confirmed it," she says. "There was palpable anger in the room."
Best known as one of the late Princess Diana's confidantes, and as a former luxury goods executive who headed Tiffany's and Asprey's in the UK and later ran her own jewellery business, Monckton is a somewhat atypical disability activist. Her familiarity with some of the relevant issues initially came from being the mother of Domenica, her 17-year-old daughter who has Down's syndrome. Subsequently, her interest has been stoked by the enormous feedback she has had from families on a series of television documentaries about disability that she has fronted.Best known as one of the late Princess Diana's confidantes, and as a former luxury goods executive who headed Tiffany's and Asprey's in the UK and later ran her own jewellery business, Monckton is a somewhat atypical disability activist. Her familiarity with some of the relevant issues initially came from being the mother of Domenica, her 17-year-old daughter who has Down's syndrome. Subsequently, her interest has been stoked by the enormous feedback she has had from families on a series of television documentaries about disability that she has fronted.
Four years ago, Monckton was asked to make a documentary for the BBC about the challenges of bringing up a disabled child. Her empathetic style and the clarity with which she exposed the difficulties families were having prompted hundreds of viewers to write to her, detailing their own problems and asking for help.Four years ago, Monckton was asked to make a documentary for the BBC about the challenges of bringing up a disabled child. Her empathetic style and the clarity with which she exposed the difficulties families were having prompted hundreds of viewers to write to her, detailing their own problems and asking for help.
"They got my email from my website; I had a website selling jewellery – now I've turned it into a campaigning website because there was so much traffic. There's still a page there somewhere, deep down, where if you want to buy a string of pearls you can, but it's not about that any more," she says. "They started pinging through from midnight after the programme.""They got my email from my website; I had a website selling jewellery – now I've turned it into a campaigning website because there was so much traffic. There's still a page there somewhere, deep down, where if you want to buy a string of pearls you can, but it's not about that any more," she says. "They started pinging through from midnight after the programme."
Over the past four years she has been contacted by several thousand people. Although she occasionally feels dismayed to find that she has become the funnel for so many people's problems, she says she responds to everything. She gives practical advice, makes calls to the local councils, and puts people in touch with lawyers who can help them challenge decisions on education, housing and care allowances. She has directed many of her correspondents to the law firm Irwin Mitchell, which does a lot of legal aid work in this area.Over the past four years she has been contacted by several thousand people. Although she occasionally feels dismayed to find that she has become the funnel for so many people's problems, she says she responds to everything. She gives practical advice, makes calls to the local councils, and puts people in touch with lawyers who can help them challenge decisions on education, housing and care allowances. She has directed many of her correspondents to the law firm Irwin Mitchell, which does a lot of legal aid work in this area.
She finds the responsibility "overwhelming", she says, but adds: "You simply couldn't read the stuff I do and not get involved." The experience has ignited a political anger that she never previously felt. "Because of all the correspondence that I get, I have a very, very bleak view. I suppose the people who write to me are the people for whom it has all gone wrong. But I've now got a database of 4,000 emails – so it's going wrong for an awful lot of people," she says.She finds the responsibility "overwhelming", she says, but adds: "You simply couldn't read the stuff I do and not get involved." The experience has ignited a political anger that she never previously felt. "Because of all the correspondence that I get, I have a very, very bleak view. I suppose the people who write to me are the people for whom it has all gone wrong. But I've now got a database of 4,000 emails – so it's going wrong for an awful lot of people," she says.
It is time-consuming and emotionally gruelling, but, mainly, the letters make her furious. "A woman wrote to me saying, 'I want to tell you something I've never told anyone else before – how close I came to killing my child because I just couldn't put one step in front of the other'. If you are feeling pretty depressed anyway, which everyone is sometimes, it makes you feel worse. But I always get so bloody angry because it shouldn't be like this," she says.It is time-consuming and emotionally gruelling, but, mainly, the letters make her furious. "A woman wrote to me saying, 'I want to tell you something I've never told anyone else before – how close I came to killing my child because I just couldn't put one step in front of the other'. If you are feeling pretty depressed anyway, which everyone is sometimes, it makes you feel worse. But I always get so bloody angry because it shouldn't be like this," she says.
While there is widespread support for Monckton's drive to raise awareness of the issues faced by many families of children with learning disabilities, some of her conclusions and solutions (such as her views on the dangers of the Human Rights Act, particularly the right to an independent life, for when those children reach 18 years of age) do not always chime with the thinking of mainstream disability charities.While there is widespread support for Monckton's drive to raise awareness of the issues faced by many families of children with learning disabilities, some of her conclusions and solutions (such as her views on the dangers of the Human Rights Act, particularly the right to an independent life, for when those children reach 18 years of age) do not always chime with the thinking of mainstream disability charities.
Loud voiceLoud voice
Disability campaigning can be a fragmented sector, and Monckton's approach has attracted criticism from bloggers who comment that her privileged background (wife of the former editor of the Sunday Telegraph, Dominic Lawson, brother of Nigella) has given her a disproportionately loud voice on these issues. But others are impressed by Monckton's indefatigable work to bring the experiences of the families who have contacted her to a wider audience.Disability campaigning can be a fragmented sector, and Monckton's approach has attracted criticism from bloggers who comment that her privileged background (wife of the former editor of the Sunday Telegraph, Dominic Lawson, brother of Nigella) has given her a disproportionately loud voice on these issues. But others are impressed by Monckton's indefatigable work to bring the experiences of the families who have contacted her to a wider audience.
"We all have a shared humanity and when one human being sees another human being suffering, you bloody well get up there and try and help. I feel very ashamed. I probably would not have got into any of this had I not had Domenica. I would have merrily gone through life. It has been a huge privilege to meet these extraordinary women," she says."We all have a shared humanity and when one human being sees another human being suffering, you bloody well get up there and try and help. I feel very ashamed. I probably would not have got into any of this had I not had Domenica. I would have merrily gone through life. It has been a huge privilege to meet these extraordinary women," she says.
One mother at the House of Commons meeting described how she had wanted to drown herself in the local reservoir "to get out of the unending hell" of caring for her profoundly disabled son without adequate help. Another described the expense and strain involved in getting trained carers to help look after her 10-year-old son who was born deaf and blind, and with part of his brain missing – detailing how little support she got from her local council.One mother at the House of Commons meeting described how she had wanted to drown herself in the local reservoir "to get out of the unending hell" of caring for her profoundly disabled son without adequate help. Another described the expense and strain involved in getting trained carers to help look after her 10-year-old son who was born deaf and blind, and with part of his brain missing – detailing how little support she got from her local council.
This morning, Monckton has had an email from an 82-year-old father who is unhappy that his 53-year-old daughter is eligible for only four incontinence pads a day. "That's not how you should be spending your old age. I am going to get on to his local authority," she says.This morning, Monckton has had an email from an 82-year-old father who is unhappy that his 53-year-old daughter is eligible for only four incontinence pads a day. "That's not how you should be spending your old age. I am going to get on to his local authority," she says.
"I feel weary that this is still happening," she adds. "I distinctly remember our prime minister going on Mumsnet [the parenting website] saying that from now on there will be no more problem of getting incontinence nappies – because there was a limit of four a day.""I feel weary that this is still happening," she adds. "I distinctly remember our prime minister going on Mumsnet [the parenting website] saying that from now on there will be no more problem of getting incontinence nappies – because there was a limit of four a day."
David Cameron appeared in one of her documentaries and she has met him since he became prime minister to discuss concerns over funding for respite care. "I am very sympathetic with him, given his experiences, but I am disappointed that he doesn't seem to be addressing the needs of those people who a lot of ministers would perceive as a very expensive minority."David Cameron appeared in one of her documentaries and she has met him since he became prime minister to discuss concerns over funding for respite care. "I am very sympathetic with him, given his experiences, but I am disappointed that he doesn't seem to be addressing the needs of those people who a lot of ministers would perceive as a very expensive minority."
She had hoped that the session in the Commons would help to raise awareness of some of the key issues facing families with learning disabilities. "The idea of the session was to work out a campaign, because united you are stronger," she says. She would like to see the creation of a minister specifically for people with learning disabilities. She is angry at the government's "obsession with localism" and refusal to ringfence money allocated for respite care payments. "What is the point of allocating this money and then not ringfencing it? You need a national framework of care. For learning disabilities, you are talking between 900,000 and a million people.She had hoped that the session in the Commons would help to raise awareness of some of the key issues facing families with learning disabilities. "The idea of the session was to work out a campaign, because united you are stronger," she says. She would like to see the creation of a minister specifically for people with learning disabilities. She is angry at the government's "obsession with localism" and refusal to ringfence money allocated for respite care payments. "What is the point of allocating this money and then not ringfencing it? You need a national framework of care. For learning disabilities, you are talking between 900,000 and a million people.
"Surely, as a nation, we can look after them properly without parents having to fight every step of the way. You saw it etched on their faces – the exhaustion – what they've had to go through. It should be something so easy to get right.""Surely, as a nation, we can look after them properly without parents having to fight every step of the way. You saw it etched on their faces – the exhaustion – what they've had to go through. It should be something so easy to get right."
Curriculm vitaeCurriculm vitae
Age 59.Age 59.
Family Married, two daughters.Family Married, two daughters.
Home Dallington, East Sussex.Home Dallington, East Sussex.
Education Couvent des Ursulines, Tildonk, Belgium.Education Couvent des Ursulines, Tildonk, Belgium.
Career 2002-04: member of the Asprey & Garrard advisory board; 2000-02: CEO, Asprey & Garrard; 1997-2000: president, Tiffany, London; 1986-97: CEO, Tiffany, London.Career 2002-04: member of the Asprey & Garrard advisory board; 2000-02: CEO, Asprey & Garrard; 1997-2000: president, Tiffany, London; 1986-97: CEO, Tiffany, London.
Public life Patron, Down Syndrome Educational Trust, Acorn Children's Hospice, Downside Up and the Diana Award; president, KIDS; founder member, the Bulgarian Abandoned Children's Trust; ambassador, Together for Short Lives; member, Department of Health special educational needs pathfinder group.Public life Patron, Down Syndrome Educational Trust, Acorn Children's Hospice, Downside Up and the Diana Award; president, KIDS; founder member, the Bulgarian Abandoned Children's Trust; ambassador, Together for Short Lives; member, Department of Health special educational needs pathfinder group.
Interests Poetry, people and precious stones.Interests Poetry, people and precious stones.
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