The anger and rage around the appointment of Stephen Bubb continues to play out in social media. Bubb, himself, feeds the fire, effortlessly with no need for further comment. The set of comments on my previous post (and on many posts on this blog) provide illustration of the consistent fight, fear and disempowerment of learning disabled people and their families.
Around 16 years ago now, I first met Fran, our advocate, through what we thought was a groundbreaking new initiative by the local authority. The ‘Parents Advisory Group’ (PAG). Wow. We were ready (we thought) to challenge the world of ‘special needs’ and bring about change. Such naivety. We thought nothing of the parents ahead of us in this new and strange world.
Earlier this year, Bill Mumford came to meet a group of Oxfordshire parents and allies including Pat and other carers, who had decades of caring experience. It was more than apparent that the fight had been fought, without sniff of victory, over and over and over again. The balance of power firmly in the hands of the provider (NHS or otherwise), commissioners, local authorities and staff who can, with ease, draw on the devastating tool of ‘contact’ and worse to control dissenting voices.
Right now, we have a bit more welly than we did back in the days of PAG. We have a platform not previously available to the likes of Pat (although she, and many others like her are still standing ready in a way that makes me weep at their undented commitment in the face of decades of fuckawful fighting).
It’s kind of fascinating to see the fire fighting techniques of the conventionally powerful (including big charities) at the mo to #justiceforLB. Apologetic (lay) name dropping blog posts, press releases, personal emails/DMs, tweeted ‘concerns’ or ‘pleas’ to unite rather than fragment, meetings involving a cherry picked few to neutralise/counter mobilise.
In addition, we receive genuine and heartfelt messages of support from some. Outraged and frustrated by unfolding events and complete lack of action.
Earlier, George Julian reflected on how we’re damned if we do and damned if we don’t in terms of engaging with discussions around the latest shambolic developments. Mark Neary has pretty much captured all that needs to be said in his post; ‘So tainted, it can only do more harm than good’. We ain’t being divisive or difficult (a pretty offensive insinuation, given that the only division throughout #107days was the deliberate lack of involvement by any big charity other than the NAS*). We all know that this new steering group is not going to lead to any effective change. It will simply eat more time (not nosh anymore, I suspect) with talk. Years and years of talk.
It was an error appointing Bubb. One he underlines with each post. One that is documented in various posts and tweets. A very public error. One which will be analysed and written about in future dissertations/research projects. The beauty of social media is that voices of dissent can’t easily be silenced. And remain visible. A very public record.
So. For the record, we have no alternative agenda or conflict of interests. We simply want effective change. Not one member of Bubb’s merry band can say that.
*Ironically the likes of the NAS and Mencap were set up by raging parents.
On Tuesday the CEO of the “not for profit” company that provides supported living for the residents where my daughter lives apparently just dropped by unannoinced with his entourage there was of course an astoniching tidy up and all on their best behaviour on his and their arrival. Bearing in mind the house had faild a CQC inspection which it has apparently recently passed. What I cannot understand is that this very high ranking visitot made no effort to enquire about her life at the house which my daughter describes as like being in a prison she was polite enough to introduce her PA and show him/them around her raised allotment, garden and the beautiful moasaic she has made with the dedicated support of her own staff. I do wonder what the purpose of his visit was and how much he truly values people and personalisation he has after all written a very well recieved book about it.I would like him to stay for just a couply of days in this house and get a real feel of “whats working and whats not working!!!” Hello is there any one out there who looks at this stuff anyway? I continue to be a raging parent along with the rest of you my heart truly aches for those who dont have a family to fight their corner.