Rosa’s Crusade

Rosa Monckton is on a “crusade” it says so on her website http://www.rosamonckton.com/index.php/home/ . She’s on a crusade to help the poor families of children with “real learning disabilities” (not the fake ones she alludes to in her blog http://www.rosamonckton.com/index.php/home/article/58 …. and you don’t have to read very far back on her website to see that prior to 2008 most of the articles are about holidays (expensive ones) or jewellery. The only mention of her “daughter with Down’s syndrome” was that she was the God daughter of the late Diana, Princess of Wales. Now that might make me sound slightly bitter, a bit of a socialist with a chip on my shoulder, but I honestly don’t have an issue with class or money. It’s what people do, say and act that matters to me not where they come from or how much money they have.

My problem with RM is the influence she has because of her friends and position. She is an enormously privileged position to be able to help but instead she continues to scaremonger. I do find this very frustrating and yes, this makes me bitter!

I also wonder why she’s never got involved before. While we were all there campaigning with the Every Disabled Child Matters Campaign were was she? While we were influencing Government policy about disabled children and pushing for Aiming High for disabled Children (which BTW had a big impact) where was she? When Valuing People and Learning Disability Partnership Boards around the country were making huge changes in local services for people with learning disabilities where was she? Okay, so maybe her daughter was a little young at the time and she can be forgiven for that but her ignorance of past campaigns, and present policy is pretty dire and yet she’s the one who gets the opportunity to reach millions of people with her agenda and her opinions.

My point is that RM still talks about “handicapped children” still talks about disabled people “suffering” from their conditions and uses the word “normal” a lot. She is so outdated in her opinions and out of touch with what is really going on in our world it’s scary…and in my opinion dangerous and here’s why….

Following her horrendous (in my opinion) documentary “letting go” (and her previous, equally horrendous programmes about families of disabled children) I heard yesterday that she’s planning another documentary about older carers of people with learning disabilities.

“Oh please God no” I said out loud. “Please don’t let this woman frighten any more parents”.

It’s bad enough that she scares people of my generation and younger, but many older carers are far more vulnerable, susceptible to believing bad news stories and harder to reach than others.

This is a generation who were often told give up their kids to long stay hospital institutions, put them in a home and forget about them and go and have another baby!. Who, having chosen to care for their child themselves (and do none of the above) got left to get on with it, with little or no help from the State and then put up with huge amounts of prejudice, ignorance and abuse in their everyday lives as a result. Their children were deemed uneducable so no education was provided (until the 1970s and then it was segregated and non aspirational). These are parents who often have little trust in services, who have been promised much in recent years and delivered little and who probably now don’t trust anyone ( and who can blame them?). Parents who may not have the internet but do watch the telly and may read newspapers (like the Daily Mail)

Those of us who have been working with older carers of people with learning disabilities know only too well about their fears and nightmares for the future when they are no longer around, and in our small way we’re trying to help them plan for the future. I have a scary feeling that RM’s “crusade” won’t help them at all and compound their fears and increase their nightmares. While we are all trying to tell them there is another way, that good things can happen if you know what to do and where to look, RM will be out there (yet again) scaring the life out of them.

She also now has a petition (being promoted by the Daily Mail). It’s to ring fence money to ensure “cradle to grave care for people with learning disabilities” and it has over 12,000 signatures (but needs 100,000 to get it debated in the Commons) I for one won’t be signing it!

My first thought when reading about this was that families of people with learning disabilities need more than ring-fenced funding to ensure cradle to grave “care” they need accurate information, advice and support to help them help their loved ones live the life they choose. They need to know what their rights are and the rights of their children (if they know these things the money won’t need to be ring-fenced because the assessments should be needs led).

In one of her blogs RM says… “These parents and carers are not organised, they are not part of a union, withdrawing their labour (of love) is not a threat to the state, they have nothing to bring to bear on the politicians” Actually though they do have rights and as adults in their own right so do our kids…perhaps you should tell families about these Rosa!

When we talk about rights, she’s also bemoaning the Mental Capacity Act. I dread to think what she’ll say about this! Her blogs on her website already talk about the fact that people with learning disabilities can’t make their own decisions and that families have no rights. This also isn’t true, some can and some do make decisions about some things, but they may need support to do this. For those who lack capacity there are systems in place. I hope she’ll talk about decision making agreements and best interest meetings and decisions, Court of Protection processes and how parents can become a Court Appointed Deputy to advocate for their loved ones ( and in Scotland parents can become legal guardians under the Adults with Incapacity Act – http://www.scotland.gov.uk/publications/2008/03/25120154/1)   but I won’t hold my breath!

Families also need to know what good support can look like and be inspired by other peoples positives experience so they can see what is possible. They will see then that some people with learning disabilities do have a good life. I hope her next documentary will show some of this, but I won’t hold my breath for this either.

I’m sure that RM means well and believes passionately in what she’s doing and has the best intentions but my personal belief is she’s doing more harm than good. I don’t deny there are many, many things wrong with the current systems. It’s not all good and people still have bad experiences. The 1300 e-mails she received following her last documentary were clearly from real families in despair and with real difficulties. I too hear from families all the time through my work and I’m not saying that people shouldn’t know about these experiences, they very definitely should but there has to be balance. There is still a lot to do to ensure that people with learning disabilities and their families get the help and support they need and to have equality of opportunity but a lot of good things are also happening.

RM says  “The disability lobby in this country has been driven by those with physical difficulties, while those with a learning disability have been dragged along in their wake” However, whilst it may have started with campaigning from the disabled peoples movement the learning disability lobby have hardly been quiet, actually lots of us have worked successfully together (all means all after all) So, instead of going out on a “one woman crusade” perhaps it would be a good idea for her to work with those who are out there already working for change and doing a bloody good job actually.

N.B. I also have to say that the BBC have some responsibility here, they commission her programmes after all. I wish they’d stop!