I’ve been reading lots of stuff on Independent Living today and feeling as confused as ever. What does it really mean? It all seems intrinsic to the Personalisation/ In Control agenda but everyone I speak to seems to have a different view as to its true meaning.
One thing that pops up often in the Independence debate, is a phrase about “preparing the person for a time when the carer/parent is no longer around”. Social care professionals are especially keen on this concept and it was used all the time when Hillingdon wanted to send Steven to the hospital in Wales. We hear all the time about how families are excluded from the social care professional’s eyeline when the disabled person hits 18. But this takes that on to new heights (or depths) and taken to its logical conclusion would mean that the learning disabled person would have whole chunks of their life curtailed, so they can rehearse for a time when their carers are no longer around.
Whenever I discussed this issue with Hillingdon, they solely focused on the practical. Emotional connections never once appeared in the conversation. And I would suggest, that the emotional attachment for a learning disabled person is as important, if not more so, than the practical support they receive.
As Steven has become more mature, there is hardly anything practical that he needs from me. If he were to be living “independently”, he would still be needing 24 hour support, so a support worker would be providing the practical help and support. There are many things at home that Steven now does for himself – he can load and start the washing machine; he can cook something basic in the microwave; he can change his bedsheets; the list is very long. He may need help with some of the tasks but that would apply wherever he is living.
In the CoP judgement, Justice Jackson quotes the independent psychologist as saying that living at home with me was in Steven’s best interests because I was the “best person to engage with the narrative of Steven’s inner life” as a result of our shared experiences. This morning, before he went for his spa, Steven engaged me in a long Mr Bean discussion. The two support workers were around but he chose to talk to me about it. When Steven discusses a Mr Bean episode, his narrative includes memories of the many times he’s watched it; how he’s acted out the episodes in his real life; who the people in the episode resemble from Steven’s own life. I know why Steven choses me for this chat – I am the only person who can connect to all the references. The support workers will try but they don’t have the shared history. This is very important to Steven.
I remember a moment in 1997 when we took Steven to the London Transport Museum during the school summer holidays. Earlier on that year, I had been to two funerals for the last of my aunts and uncles. Whilst at the museum, they had an old 120 bus on display. I used to travel on this bus many times as a kid with my mum and Auntie Rose. I became convinced that the museum had got the wrong destination on the front of the bus. The event pierced my gut because it hit home on the tube home that there was nobody left from that generation in my family to check this out with. When the last one who remembers is gone, you really are quite alone.
In my counselling work, I have seen hundreds of people who are either facing their own death, or having to deal with the death (imminent or actual) of a loved one. And one consistent thread from where I sit is that nobody can predict how they are going to feel or react until the time actually comes. Whether you loved or loathed the person, on their death, everything changes and major psychological and emotional shifts take place.
So why should the learning disabled person be put into a forced rehearsal that (a) the non learning disabled person doesn’t have to undertake, and (b) is actually impossible to do.
I suspect I’m rambling. So, one final story to finish on. Last week, I was cleaning upstairs and I heard “Fox On The Run” by The Sweet come on the radio downstairs. Steven launched into a full blown narrative with his support worker, who try as hard as he might, didn’t really get a single reference. Steven told him the names of all four members of The Sweet. He talked about how they played the song during “nature studies” when he was in Gilbert Best’s class in primary school. This was back in 1998 (16 years ago) and the class had just been on a nature trail in Ruislip Woods. Steven talked about the time “Dad saw Brian and Steve in the bacon shop in Hayes”. This must have been about 1974 and I jumped off the bus and followed them into a cafe, sat myself at the table opposite and listened to every word they talked. Steven has adopted that story, as one of the hundreds of family histories that entertain him so much. And when it came to the line “Foxy on the run”, Steven reminded the support worker that Foxy used to go to Pop Idol with Pete Waterman. All of these stories went way over the worker’s head.
Of course, there will come a time when Steven won’t have anyone to relate these stories to. But it would be a real shame to bring forward that moment, in the name of making him more independent.