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.