The Power & The Gory
Steven and I have just been participating in the weekly Gladiators viewing. This episode was the 1994 Grand Final where Sam Cojoe is nearly decapitated by Shadow in Powerball. Steven has watched this episode so many times now that he has built up an incredibly detailed narrative about what happens to Sam from the point of him being whisked away from the National Indoor Arena in an ambulance. I could have gone the same way as Sam today because I wasn’t really concentrating on all the ins and outs of Duel and that tends to wind Steven up. My mind was half with Ulrika but half mulling over a couple of things I stumbled across this morning.
Before I left the flat to come back here, I watched an episode of Escape To The Country. At the end, the male househunter cuddled up to his wife and said: “This place will be idyllic. If you have your partner and you have your family and you have your home, you have everything”. It was slightly slushy but it brought me back for the umpteenth time to the incredible Power that Hillingdon have exercised since 2009 in all three of those areas in my life. Firstly, Whistler’s Mother told me that if I didn’t leave my wife, she would take Steven away. Partner gone. Then six months later, she refused to return Steven home after his three days respite and it took a year to get him back home again. This was illegal. Family gone. Then 18 months after Steven eventually came home, the council made us homeless, again illegally, and we lost our home. Home gone. The three foundation stones of our lives removed by people who have more power than us. Using the househunter in Devon’s template, we had lost everything. We had nothing.
But we didn’t have nothing. We had everything because we had love and belief and balls. And some luck.
Somehow merging with those thoughts are the reflections I’ve had since reading Mark Brown’s post this morning about confidentiality. Mark wrote the post in response to someone who had made a criticism of Seven Days of Action. The post is here: https://thetiredoptimist.wordpress.com/2016/05/03/does-confidentiality-matter/comment-page-1/#comment-51
What I think is at the heart of this is another hurdle that faces people with learning disabilities and their families. I don’t think it would be an issue in families that are neuro typical. It’s the argument about who is in the best position to decide on the best interests of someone who is deemed to lack capacity to make the decision themselves. In this case, it is about telling a story in public about the learning disabled person. I think it takes a very open minded authority who play with a straight bat to take on board, Justice Munby’s famous quote of The State being the servant not the master”. In all the stories in Seven Days of Action, the State was definitely the Master. In the three examples I’ve quoted from my life, The State mastered some shocking decisions for us. The Justice For LB campaign has demonstrated consistently for three years that when the State body is intent on controlling and concealing the truth, the Power dynamic becomes very gory. And it’s fascinating how the State nearly always use “confidentiality” when it is clear to everyone that they are trying to shut down the truth emerging. Dr Sara Ryan wrote just yesterday about how the family advocate was expected to sign a confidential confidentiality agreement. In Hillingdon’s application to the Court of Protection, one of the orders they were seeking was for me to be prevented from mentioning Steven or the actions of the Authority online or to the media. And more than one of the mothers involved in the Seven Days of Action stories has been threatened with a gagging order since the start of the campaign.
I’ve spoken to the mothers a lot since the campaign was first mooted and I am completely convinced that none of them were prepared to take part for their own egos. Going public nearly always comes out of desperation. Justice Peter Jackson referred several times during Neary vs Hillingdon to the underhand tactics of Hillingdon – blocking scrutiny, false promises, incorrect information. The list is endless. Families tend to go down official channels first because they know no different. It took me seven months to realise this wasn’t going to get us anywhere. In fact, that’s not true, it would have got Steven to Wales, probably for the rest of his life. I genuinely felt it was in Steven’s best interests to contact the press and media and to speak publically online about our predicament. It felt like the only way that I could find other people who had been through similar and perhaps securing legal representation. Thank goodness, it worked. Did my actions compromise Steven’s confidentiality? Possibly. But as the State invariably has the person and their family pinned firmly against the wall, I will argue that the ends justified the means.
I think it often needs a third party, in our case a High Court Judge, to examine the agenda and motives of the best interests decision makers. My agenda was only to get Steven’s voice heard and for him to be able to realise his wish of returning home. I’m not convinced that Hillingdon had a pure motive for their (seemingly) ethical position over confidentiality.
As has been discussed many times in this blog, I agree very much with the thoughts of Dr Sara Ryan when she says that society and in particular, the State, by and large, see learning disabled people as not quite human. It can be the only explanation for why Southern Health continue to treat that population of their patients with such utter contempt. Not once in 2010, did Hillingdon ever see Steven as a human being with the same needs, loves, values, wishes as the rest of us. To keep someone away from their home and family for eight years like Eden Norris in Seven Days of Action reveals that the professional decision makers have long since crossed the line of seeing Eden as a human being. Steven doesn’t have the same opportunities as I have to present his human beingness. He is seen as a “service user”. With a less open minded Judge, he could have been SN. All these things means he faces an uphill battle in asserting his humanness.
I’ve been challenged a few times about Steven’s online radio station. The same argument usually. Is his privacy and confidentiality being compromised by broadcasting his music taste and anecdotes weekly? It’s true, he has no idea of the reach of his broadcasts. I told him earlier that his choice of Coldplay didn’t go down very well this week. His response – “No more Coldplay for the world and Brighton”. Without understanding the scope, one things is clear, he gets a huge buzz out of compiling the programme each week. He’d be very upset if someone tried to stop him. For me, it’s another best interests decision.
Regardless of the music station. Regardless of the court case. Regardless of my writing. Steven now has his own place in the world. A tiny, personal space where he is human.
I like that and I think he does too.
From → Social Care