A Small Sea Change?

Yesterday, there was a lot of publicity given to a call to the government for action, from families of people who had been in Winterbourne View. 4 out of 48 families affected, along with Mencap, wrote a letter to the government demanding faster, more decisive action. What wasn’t clear from the way the story was presented was whether those four families approached Mencap for their support or whether Mencap orchestrated the whole show. For me, it appeared to be the latter. Mencap like “calling” for things and the tone and language of the letter had Mencap’s fingerprints all over it.

Victoria Derbyshire ran a piece and invited three speakers: Dan Storer from Mencap, Cath Dyer, the mother of Claire Dyer who spent a year in an ATU and George Julian representing Justice For LB. A lot has been made that there were no learning disabled people on the panel and it is a very fair point. Mencap could have found one learning disabled person surely but in fairness, it was mainly the responsibility of the programme producers who selected the panel. I do think it is really important though to mention that the panel’s make up was very different to how it would have been five years ago. Back then, it would have been all professionals and the major charities on Victoria’s sofa – a family member and a person from an organic, non charity led campaign wouldn’t have got a look in. A small change perhaps but one that strikes me as very significant.

George played a blinder and threw a hand grenade into proceedings by questioning the part Mencap have played in the failure to bring about post Winterbourne View change. She challenged the integrity of being both “the voice of learning disability” and a major provider of care services. In my view, she was spot on. Mencap were one of the 51 signatories to the WV Concordat which failed dismally to do anything of note but have brushed that failure under the carpet and got on with their business of calling for things. For people they claim to support, it doesn’t cut the mustard.

Later I popped out to get our fish and chips and bumped into an old friend. She is the mum of one of Steven’s old classmates and I’ve known her since the lads were in primary school. We lost contact when the boys left school but met up by chance about four years ago. I knew her son was in an inpatient service on the South Coast and has been there just over four years. What I didn’t realise until yesterday was that he was moved to the Unit, exactly seven days after our Court hearing in 2011! Just think – at the moment the director of adult social care was standing on the steps of the High Court and telling the news cameras that “lessons had been learned”, her department were in the process of doing exactly the same thing they were planning on doing with Steven.

Sorry, I digress. My friend had seen the Victoria Derbyshire show and was quite cross about George’s challenge of Mencap. It was quite awkward because I love the bones off George and felt everything she said needed saying. But my friend talked about the “wonderful support” she had received from Mencap and wouldn’t hear a word said against them. I’m afraid I was quite blunt and asked her to be specific. What support? Whatever support they’ve given, five years on,  Steven’s mate is still in the ATU. We parted as my cod was now stone cold but the conversation stayed with me all night. Later I got a Facebook message from her and we carried on the chat online. She had been discussing our conversation with her husband and said, “Do you know Mark – I feel awful. All this time I’ve gone along with the illusion of support”. It was very sad. I asked her whether I could share the story on this blog because I think it’s key to recognising a small sea change.

What would I want from a big learning disability charity if my son was in an ATU? With their huge funds, I’d like them to help fund a legal team so we could get our case before a Court. In the meantime, I’d like one of their staff to accompany me to all the meetings I had to attend to offer their expertise and professional support. I’d like to tap into their media contacts but it would have to be our story, not a Mencap story.

I felt some sympathy for the poor sod from Mencap as he sweated his way through the Victoria Derbyshire interview. I think their time is almost up. Campaigns like Justice For LB, The LBBill, Seven Days of Action (and there must be many more that I don’t know about) are changing the way that campaigns happen. For a start, they’re inclusive in a way that I’ve never experienced before. But they come from a place that I hope never changes. A place with heart, with creativity, with humour, with wisdom. Listening to the Mencap man, the language he used was indistinguishable from the language of the Jeremy Hunts and the Katrina Pearceys. It’s the language of the system. What was so shocking about George’s contribution was that it was most definitely not that language.

These are little changes. These might be huge changes.


10 thoughts on “A Small Sea Change?”

  1. I am not sure that this is just a failing of large charities. Our experience of a small, local charity, that has no “competition” for its services and also has a conflict of interest (relies on local authority funding, also supposed to provide evidence that children will need EHCPs and care packages provided by local authority after leaving their service) has been devastatingly bad. I really sympathise with the mother in your story. It has completely destroyed my faith in all services, systems, and charities. It’s like seeing the reality of the Emperor’s New Clothes, but, even when you say it out loud, the other families rush to support the amazing clothes rather than deal with the trauma of the reality.

  2. I think it fits in with the beginnings of a swing to stop looking at the whole “charity” industry through less rose tinted specs. ( PS This has happened before in the great age of Victorian charity, when critics scathingly noted that some of the biggest givers were those whose activities had placed the needy in their pitiful situation in the first place!)

  3. Actually Mark I signed that letter and we have been working hard WITH Mencap for five years now behind the scenes for change. We could have just sat there, after all most of our children are out of ATUs but we haven’t. We all want the same thing surely, yesterday was a very sad day in my eyes, there was an opportunity to say so much but it was used for charity bashing. I won’t say a bad word against Mencap because I have seen how hard they are working , some people don’t seem interested in what they are doing and quite honestly never will, they will never do anything right. How strong we could have all been working together. Our thoughts though are with the people suffering now and their families and it was we the families that asked Mencap to help us voice this on a day we had a voice to do it.

  4. Who is National Mencap for? It is for the movers and shakers who dream up new PR material to reel in publicity and funding for their top non jobs in the office. Whereas the real grafters are the small local Mencaps who are diligently serving the learning disabled citizens in their community without all the hype.

  5. Mark go onto Suesspiciousminds blog (and everyone who reads this) It sings your praises as they should be sung. Good on you

  6. Mark I will ask you about the LBCampaign – what do you mean by this campaign being inclusive and how has people with LDs been involved in all aspects of the campaign (including putting together the draft bill, attending the meetings with Ministers etc)

  7. Maybe you should join forces with National People 1st (Self Advocacy) – work with user-lead organisations rather than those for people with LDs. I know some of you would be challenged by having people with LDs representing your childrens interests – unsure why? I really do not understand where the resistance is – Disabled people only got their rights because DP lead the campaign – LBGT rights have only been achieved because LBGT people lead the campaign with support from family, friends and allies.

    1. What effective rights, do the deemed mentally ‘disabled’ have exactly ?

      Presumably, the right not to be discriminated against under Equality and Discrimination Acts ?

      But what does that amount to ?

      It, certainly does not stop all decisions being removed from the deemed ‘disabled’ at 18 on their being illegally declared ‘incapable’ of making them, under the MCA.

      This is the biggest discrimination, and it is by the state.

      It means, that for life, the disabled have no rights to complain about the services, forced upon them by the state, or choice as to where they live, who they see, what they eat, or medication, or, how they spend their time, or, money.

      They are discriminated against by the removal of their legal competency, although, illegal under UN disability rIghts.

      They are not allowed any choice of their legal representation, an Official Solicitor is appointed for them, they cannot dismiss him.

      Under the MCA, an IMCA, and RRP paid by the state, ticks the box that they are OK, THEY ARE not allowed to dismiss, or disagree with them, or their appointment.

      And, the only people that care about them, their parents, and family, have no rights, or even voice, or can even see them, when they want, or at all if excluded.

      This, is the reality of the deemed mentally disabled’s rights.

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