Today was adopted by Louise, a friend and colleague of Sara’s. This is why she wanted to support #107days and #JusticeforLB and what she is doing:
I adopted today to take Sara out to do something nice – nothing about the campaign, nothing about work (we are colleagues) – but just a bit of a treat.
Any of you who read Sara’s blog will know what a toll this has taken on her, and how in the midst of coping with personal grief she has been thrust into a role as a highly effective but reluctant campaigner. She deserves a break.
Sara and I used to chat a lot about parenthood and our kids as they moved towards adulthood. Sara’s daughter and my older son did their A levels at the same time, so we compared notes over exams, university choices, student loans – and about how on earth we’d feel when they left home. How could our babies possibly be old enough all of a sudden to make all their own choices and be responsible for running their lives? What changed so dramatically overnight on their 18th birthday to make us redundant? I remember talking about the way the term ‘helicopter parent’ is used to ridicule parents who can’t let go, and agreeing that maybe it was all a bit more complicated than that.
Of course we cried when our firstborns left – and of course over time we discovered it wasn’t quite such a separation as we feared. They ring up for advice, they come home for holidays and leave their laundry lying around, they ask for money; we ask them about their new lives (and sometimes they tell us), we remind them about stuff, we still ask them to do the washing up. It’s not a sharp divide between dependence and independence at 18, but a gradual handing over of freedom and responsibility over many years, all the while providing the safe backstop of parental love, interest and concern.
And then we got to talking about the next two kids approaching the cliff-edge of 18 – LB and my younger son. The same age, but with such different prospects. While my son followed his big brother to university, Sara has blogged about the lack of an ‘imagined future’ for LB. Long before he was admitted to The Unit, she was anxious about the absence of meaningful opportunities for him when he left school, but determined she would find something. Then came The Unit, and the stripping away of all aspiration, meaningful activity, and responsibility to do something productive. Replaced with vacuous ‘choices’ to do nothing and a cruel version of ‘autonomy’ in which Sara – who had loved and looked after him with inadequate support for 18 years – was cut out of decision-making. Worse, she was labelled as a pathological ‘helicopter parent’, part of the problem preventing LB from being an independent adult.
Of course we have to preserve individual rights for people with disabilities, of course we do. And the relationship between young people and their parents is often complex and sometimes damaging. But here’s the irony. While my sons and LB’s big sister were feeling their way gradually towards adulthood with family support along safe, well-trodden roads, LB – the one with less mental capacity and adult competence – was bundled sharply into it with no map and no guide. It feels, to paraphrase Thatcher, as if care services believe ‘there’s no such thing as family’. To exclude all parents as a matter of routine is surely wasteful of all the care and understanding they can bring, as well as tough for us parents.
So today is a day to think about Sara and all the rest of the family, and reflect on their needs and what this has done to them. We can’t make it right again, but we can try to create little pockets of peace and relaxation to lessen the pain for a short while.
#107days 
excluding parents was not simply wasteful and tough on the parents, it cost Conor his life.