I’ve been involved in a couple of debates this week about how the parents of learning disabled people can often oppress them. Of course it happens but I get frustrated sometimes that in amongst the well meant call for independence, there is often a skewed understanding of family life. Sara Ryan coined a brilliant description of this – “prolonged parental intensity”. The parent is long involved in day to day involvement that simply wouldn’t happen in a neuro typical family.
This week a client was talking about her void now that her youngest daughter has flown the nest. Later, I thought about our situation. Steven is the tenant of the home we live in, so if anyone will be flying the nest, it would be me. But if it was the other way round, the alternative nest options for Steven are pretty grim. The nests available to him are nowhere near as wide or attractive as those open to my client’s daughter. When people fly the nest it is usually with an aim of expansion. Sadly, for lots of learning disabled people it is marked by contraction and loss.
So family life continues and I wish sometimes the realities of that would be recognised more and judged less. Decisions are made including the whole family and there are winners and losers each time. Here are a couple from the past week. There are probably several ways they could have been handled but that’s not the point.
On Mondays, Steven goes to the Arts Centre. The usual plan is that I go off early to buy the snacks and open up the Centre and Steven & his two support workers set off about 9.30. Once they arrive, I head off back home to do the hoovering. This week, I was at the Centre awaiting their arrival and at 9.15, the second support worker phoned me to say he was stuck on a train and it would be at least 10am before he arrived. He assumed that everything would just be put back an hour. There were two problems with that. Firstly, the room is only booked until 11.45 and then other people use it. Secondly, expecting to be at home, I’d booked a telephone assessment with a new client at 10.45. I’d now be doing a potentially emotional interview for the client slap bang when Steven & the staff arrive. So, do I meet my needs and cancel Steven’s trip out or do I meet Steven’s needs and cancel the assessment and try and find another room for Steven’s session. In this instance, I chose the former and Steven lost out.
Two days later, a similar thing happened. We needed someone at home to let the housing manager in for her 3 monthly inspection. Does Steven have to forego his gym session or do I cancel two hours at work? Although, cancelling the work could be seen as unprofessional and letting the clients down, and it cost me £60, that is what I chose to do and Steven got his gym session.
The point of these stories are that they are daily occurances and will continue to be because of the prolonged parental intensity. Decisions are made and plans are made that try to accommodate everyone’s needs. Most of the time it can work, sometimes one of us loses out. Dare I say it, sometimes, someone’s best interests can’t be met.
I can’t see how it can work any other way.
From → Social Care