Rosa Monckton, learning disabilities and independence

A graphic with a grid on which man-like figures are displayed in each square, one of which has a stick and another is replaced by a wheelchair symbolThis post is part of Blogging Against Disabilism Day 2013

Rosa Monckton, as I have written on this page before, is an extremely privileged lady. I do not mean privilege as in white or, needless to say, male privilege. I mean she has enormous advantages: a lot of money, very powerful political connections and the ear of the national media. Not for her an article published in an obscure corner of the Daily Mail website, no, this woman can get a BBC documentary produced to air her views. She was a friend of Princess Di, she’s married to the former editor of the Sunday Telegraph who is also the son of a cabinet minister under Margaret Thatcher. Her views are taken seriously, particularly when they concern something which is no doubt very dear to her: the welfare of people with learning disabilities. Like her daughter, Domenica, who has Down’s syndrome. Unfortunately, she is somewhat set in her ways, not very fond of people with such disabilities having personal autonomy, and her articles bring out the prejudice in a lot of readers, such as the comment posted below her most recent lengthy article in the Daily Mail:

Thank you for highlighting this…independent living didn’t work before it won’t work again, nothing has changed people with downs are children and the do gooders need to get to grips with that ,not promoting human rights on the vulnerable people that are at risk..at the bottom of this it purely down to finances …yet again.

Rosa Monckton portrays her daughter as an eternally innocent child who will never be able to live on her own or make decisions about anything significant. She also gives a few extreme examples of people with learning disabilities whose ‘autonomy’ led to them making bad decisions and living in squalor or getting into serious danger whose parents were unable to extricate them from these situations because they were freely chosen and the disabled person had every right to make the choice. These incidents could well have been the results of poorly-trained social workers who did not have the resources to try to talk the disabled people out of these ideas; it also seems she is biased towards the families’ point of view, as she is in the same position, and so when they tell her that their relative wanted to leave his residential home “in a fit of pique”, “following a disagreement with one of the other residents” (rather than because of a serious conflict), she believes them and relays their story unquestioningly. We know that there is a Court of Protection in the UK which rules on such decisions when someone does not have the mental capacity to make them themselves, although it is reported that it is very expensive. However, the Mental Capacity Act (which regulates the Court of Protection) stipulates that making mistakes or unwise decisions does not mean someone lacks mental capacity, and acts that others disapprove of do not necessarily justify being put into a care home when the same would not happen to anyone else, and less than optimal housekeeping skills (as evidenced by an untidy room or messy kitchen) also do not necessarily imply incapability.

Picture of a young white man and woman sitting on a sofa with a toddler and baby son, with a Christmas tree on the leftHowever, Rosa Monckton’s daughter is not every person with Down’s syndrome, or every person with a learning disability. There are those who can manage their own affairs or at least some of them, to gain qualifications, to hold a job, even to get married, and some have found enormous barriers stacked against them. Recently a British newspaper reported that a man who had sustained a brain injury in a motorcycle accident in 2003 was still unable to gain control over his own money, years after doctors had found him to be of normal intelligence (the same case was exposed in a BBC Radio 4 documentary in 2010, so it is depressing that he is still disempowered, and disturbing given that his deputy has a vested interest in keeping things that way). A few years ago a young woman with a mild learning disability, Kerry Robertson (now McDougall) tried to marry in a church in Scotland, but her plans were thwarted when social services objected, telling the church she did not have the mental capacity to understand marriage. When she told them she was pregnant, the social worker told her that this was foolish as the baby would be taken off her. She and her boyfriend, now husband, fled to Ireland, but the baby was removed and only returned to them after months in foster care and a couple of weeks in a supervised mother-and-baby centre. The mother had, in fact, gained a qualification in childcare and had been employed looking after children in Scotland before having to flee. It appears that a mixture of prejudices against her disability and family background contributed to the social workers’ devastating decision.

Picture of two white women, one with a face characteristic of Down's syndrome, against a backdrop of an oak-panelled wall with pictures on itMore recently, I have been following the case of another young woman with Down’s syndrome, Jenny Hatch, who has been held against her will in a series of “homes” in Virginia since last summer because of a hostile guardianship application. Jenny had lived and worked independently up until last year, but was forced into a group home (what we call a care home) because of disputes over who would pay for medical treatment following a bicycle accident. Jenny has friends who would take her in and employ her again, and has expressed her hostility to her mother having control over her affairs very clearly, but the authorities have so far disregarded her wishes. As her computer and mobile phone have been seized by the ‘home’ staff, she will not be able to read this or any other BADD post at the time of publication, but Blogging Against Disablism Day 2013 coincides with the day her case is due to be heard in the Virginia courts. The repeated sneers at “human rights” (quotes hers) in Monckton’s article stick out a mile, but the denial of human rights — there is no “so-called” about it — leads to disempowerment, isolation and misery.

Monckton refers to the case of Gemma Hayter, a young woman with learning disabilities who was murdered by some so-called friends in Rugby, Warwickshire, in 2010. She made the same point about hate crime in her documentary last year, and then also used it as part of her argument that people with learning disabilities are just not cut out to live in the real world. The problem is that abuse exists in care homes as well, and while no evidence has been found of other homes quite as bad as Winterbourne View that exist now, there has been a whole history of serious abuse (neglect and physical and sexual abuse) of disabled and elderly people, and indeed children, in communal homes for years. More recently there have been reports of serious sexual abuse of girls at a school which caters for teenagers with learning disabilities in Hampshire, and at such places (like the special school I went to), certain types of abuse (particularly by peers) is perceived as trivial, even normal. Residential care is not an option for every learning disabled person: besides the potential for abuse by staff, there is also the potential for conflict with other residents, something that is largely absent when someone is living on their own. Moving people out of their own flats into ‘homes’, besides being very expensive because of high land costs and the need for high levels of staff, is not an option for everyone; it may result in trading one type of abuse for another, and it only guarantees protection from hate crime if the disabled people are never allowed out unsupervised.

We cannot live in fear of what probably will not happen, and we should expect people with learning disabilities, particularly mild ones, to do so either. A few days ago someone drew my attention to a Twitter account called @EndingRape, which posted a whole series of “safety tips” among which were some fairly sensible ones (although they are often quite valid for both sexes and for threats other than rape), but also a whole lot of liberty-restricting, fear-mongering ones, like this:

Greyed out picture of a woman's face, with the caption "To find out what an illegal cab could cost you, ask a rape victim".I have no problem with public advice warning women of known threats such as unlicensed minicabs or people who would spike their drinks, but this series of tips seems to take no account of differing situations — there are places in the western world where it is quite safe for young girls to walk home from school without a chaperone, much as there are places that are fairly safe for people with learning disabilities to live and where they will not be harassed or threatened (although there is no entirely reliable ways of identifying them — in some areas there are middle-class people who think that having mentally disabled people around lowers property prices, while in others you have council-estate yobs with nothing much to do who attack vulnerable people for fun). People’s liberty should not be more restricted than is necessary; some sort of middle path needs to be found so that people with these kinds of impairments are able to enjoy some degree of autonomy and liberty while still being protected from hostile outsiders and, if necessary (and it is not always) themselves.

Monckton acknowledges that part of the reason why some people are placed in the community without support is because it is financially convenient for local authorities: it is the authorities’ duty to pay fees if they are in residential care, while central government pays if they are in their own flat and receiving Housing Benefit. However, we do not see Monckton mention the word “cuts” anywhere in this article or in her earlier BBC documentary at a time when the government are cutting funds to local authorities, including for services to disabled people such as day centres and support to find employment, as well as to centrally-funded provision for disabled people, such as the Independent Living Fund. Local authorities have been constrained in what they can raise and what they can spend for years, and this got worse from the 1980s on when her father-in-law’s friends were in government, to the point that they are reduced to selling pockets of land (such as playing fields and car parks) for development, just to raise money. Monckton can name a certain part of the problem but will not talk about the cause of it because she is politically compromised. It has been common to criticise a programme to release people from institutions into the community on the grounds that “it’s all about saving money” when the real agenda is that some, or most, of the people released really should not have been.

A screen grab of a white woman in her 50s standing against a backdrop of a flowery papered wall, talking to a man who is off to the leftIn the 1990s, I recall seeing an episode of the British police drama, A Touch of Frost, in which a man with Down’s syndrome, who was preparing to marry his fiancée who also had Down’s syndrome (against her family’s wishes) was suspected of murdering a young girl, wrongly as it turned out. The female manager of the home he was living in (who looked close to retirement) told the lead detective at one point, “what I do know is: the less the mentally handicapped expect from life, the easier their lives are; the less they have to do with sex, the better”. Attitudes like these that needlessly restrict people’s lives should be a thing of the past, but whatever Monckton intends, if her views are allowed to dominate the discussion on the care and autonomy of people with learning disabilities, they will become more prominent: the attitude that people with these impairments should not expect too much, and not much should be expected of them. While I do not dispute that some people with these conditions live quite happily with their families and others in care homes, others do not want or need either. People should not have their lives needlessly restricted because of others’ fears. Let’s not just complain about bad decisions and penny-pinching: let’s campaign for proper funding for different levels of supported living, as this will reduce the risk of all the abuses described.

Note: a blog an awful lot like this one was mentioned in a recent interview with Monckton in the Guardian; you can read the article and my response to it here.

Other notable BADD posts this year: Claire Wade, Frida Writes, s.e. smith @ xojane, Jane Young (on independent living), Row Row Your Boat.

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  • Thought-provoking read, ty, Matthew Smith. I was greatly reminded of the Coote family ordeal: Megan, a young lady considered to have learning impairment became pregnant and immediately was deemed “unfit” to care for her child. Although the young woman had a loving supportive family, still she was forced to flee her country in effort to preserve her family from being torn apart. Happily, Megan has proved a most worthy mother, yet no apology has been provided to the family for all that they endured. http://www.dailymail.co.uk/news/article-2148069/Mother-24-fled-Spain-social-services-ruled-unfit-bring-child-allowed-daughter.html

  • This is great, Matthew. As with so many disability issues, there seems to be this idea that one size fits all - one strategy is appropriate for everyone with X condition. This is especially dangerous for people with intellectual impairments, because there is such variety. Some people are extremely vulnerable, but others simply are not - and will have extremely restricted and unhappy lives if they are treated as such.

    It is amazing how that episode of a Touch of Frost seems to have effected people. It often comes up in conversation with various different people, and I can’t really remember watching the rest of the series.

  • I remember the episode of “A Touch of Frost” very vividly - more than pretty much any other, with one exception (and that was only one speech, not the whole story), and that quote in particular. It seemed ever so cruel, and you could see the logic but it seemed an awfully cruel and selfish logic: let them not expect too much, so they can’t be disappointed. I also remember the scene where the young man was taken away from his home and the crowd that shouted “mental” and similar things at him, and the scene where he turned up at a home or day centre following his release just as the fiancée was being driven away, and both clinging to the windows. I was hugely emotionally affected by it even though I was not really aware of disability politics then, and didn’t connect my own situation to it.

  • Blue Fairy

    I used to be a social worker working with people with learning disabilities, and I am now physically disabled myself. I have watched one or two of Rosa’s programmes, and seen articles by her in the Daily Mail.

    I agree with a lot of what you say. One of the things that most annoys me about the independent living issue is her saying that it is about cost-saving. In my experience, residential care is often cheaper, especially if you are comparing it someone living on their own with a care package. In the team I used to work in, we used to try and do group supported living, so some of the care hours could be shared, and this made it cheaper than supporting someone to live alone, even if living with just one other person. The difference between that and residential care was that the people involved chose who they wanted to live with, rather than just being slotted into whichever residential home had a place.

    Things are not perfect when it comes to social care for people with learning disabilities, but it is better than it was, and we had some great services being provided which really worked. There is a postcode lottery though; I remember one of the people Rosa met, who was denied social care because she didn’t have a diagnosed condition. This would never have happened in my team. As long as someone had a learning disability and met the Fair Access to Care criteria, they would get a service to meet their needs if they wanted it. There was no need for a specific medical condition to be diagnosed which was causing the learning disability.

    I have to take issue, though, with your saying that some situations are the result of ‘poorly-trained social workers’ who aren’t able to talk people out of doing risky things. We had our fair share of these type of cases, and they are not simple. However much training you have, you cannot simply talk someone (with or without a learning disability) out of doing something if they are determined to do it.

    Quite often, there were complex reasons behind the behaviour which required us to first understand these reasons, and then figure out if the person’s circumstances could be changed, by our intervention, in order to take away the reasons why they wanted to do whatever they were doing. Then of course, we had to get the person’s agreement for us to intervene. In one case, it took over a year of frequent visits just to understand what the problem was. The person had the mental capacity to choose to place themseleves at risk. They did want to stop doing it (we eventually discovered), but they found it difficult to admit they needed help, and difficult to articulate how they wanted to be helped.