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The Public Ear & The State Eye

January 30, 2013

I read two interesting things yesterday that led me to reflect on my relationship with social media and the wider media. The first was a tweet from @sarsiobhan that she had received a negative comment on her blog. The comment was critical of her writing about her son and bringing his life into the public domain. The second was a discussion at @SWCmedia on exactly the same topic; is it right for family members to write about their vulnerable children, particularly on the internet? The general view was that it was not a good thing and seldom in the vulnerable person’s best interests and the lack of control of how the material is received could put the person at risk. Familiar concepts in the social care world: control, best interests and risk. So much social care discourse and actions are framed in these terms and the drive to avoid risk often wins the day.

In my case, I brought Steven’s situation in 2010 to the media out of sheer desperation. After six months of having his access to justice blocked by Hillingdon council, he needed more help than I could give him to secure his release from the deprivation of his liberty. I was confident that I could shield him from any negative attention; I wasn’t totally sure of course but it seemed worth the risk. And it worked. It was through the Facebook campaign and Twitter connections that we eventually got legal representation. And I was able to gain valuable knowledge about DoLs that had been denied me by the supervisory body. In the court judgement, the team manager is quoted as saying that the media attention did push Hillingdon to reflect on their decision-making; albeit that it didn’t change anything. I don’t think it’s an exaggeration to say that without social media and the involvement of the press, Steven would today be languishing in a hospital in Wales. Facing a life in care that does not want or does not need.

That was then. What about now? Since the court case, the Get Steven Home group continues to be a vibrant group and the pool of knowledge there helps an awful lot of people. It’s very difficult to get appropriate help; have your voice heard when you’re in the sort of threatening situations that the social care world throws up. People come into the group on a daily basis with harrowing stories of powerlessness and are caught up in horrendous battles with the authorities. This isn’t a Jeremy Kyle culture of washing dirty linen in public (as someone put it on SWCmedia last night). This is about despair and survival. Following 2010, I wrote the book and that certainly involved more disclosure than had been in the public domain up to that point. From the feedback I’ve received, I know that the book is on the reading list on several professional courses, so that can only be a good thing. And I write this blog; partly because I love writing but also because I believe there are important stories still to tell. I see my blog as similar to Sara Ryan’s in that they are both about the narrative of trying to lead a “normal” family life whilst being entrapped in systems that claim to be about support. I also believe that both Sara and I write with a great deal of love and humour and a deep understanding of the people we care for that nor professional could ever have. I like to think in our writing, Steven and LB come alive and their wit, humanness and struggles come across. Compare my writing about Steven with the press release that Hillingdon issued on the eve of the court case and then argue about who has his best interests at heart and which could cause him most harm.

I’m always uneasy by the opinion that the professional’s view of best interests carries more weight that the families’ view because the professional is able to take a more detached position. Whilst they won’t have the same emotional investment as the family; they are hardly entering the arena with a completely clean agenda. They may be detached from the person but I doubt they can be detached from all the other agendas (money, resources, local politics) that come into play. I often find that professionals will imagine worst case scenarios and build their position from that. Understandable perhaps but no way to live a fulfilling life because the position will be not to do something rather than do something and try to minimise the risks involved.

In an evidence reliant world, the evidence in our case reveals that there has been absolutely no adverse impact on Steven that we have encountered from the media attention or from my writing about our story. I say, “we have encountered” because there may be some saddo having a wank over a picture of me on the steps of the High Court but I can’t get too worked up about it if I don’t know about it. Steven will occasionally ask to see the BBC news footage but to him, they are part of his video collection alongside his school plays and the person centred plan footage of him at the gym. Steven remembers the names of the journalists and they’ve been added to his portfolio of lookalikes. And every now and then a member of the public recognises him, introduces themself and congratulates him. Which makes him very happy. That’s it. No doorstepping. No hostile public reaction. No nasty anonymous letters. I haven’t dropped my protectiveness but in three years there have been no unwanted attention for Steven to deal with.

Last week, I spoke at a BIA conference and I had a few random negative thoughts beforehand: “should I put the story to bed now?”, “Does it benefit Steven from me attending these events?”, “Does telling the story serve any useful purpose?”. The response I received was incredible. People were moved. People said they were inspired. But perhaps most importantly, a number of delegates told me that our case had prompted them to examine their practice. That must be a good thing.

Not everyone, even in 2013, is an X Factor wannabe. If your priorities are right; if your heart is in the right place; if you explore your unconscious motives; if you are confident of protecting your vulnerable relative, it is important to tell your story and for your story to be heard,

Sometimes we have to stand up and be counted.

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