No families come under the microscope of the State more than those families with a learning disabled member. It starts at birth but really ratchets up when the disabled person reaches adulthood. Whole swathes of professionals suddenly appear on the person’s 18th birthday with big plans of what your son or daughter’s future should look like. Your role in their life will come under very close scrutiny and all your values, beliefs and traditions will be questioned.
Nowhere does this reveal itself more than in the thorny issue of “independence”. And what this usually means to the professional is independence from the family. I’m sure it is not the case all over but there is lots of anecdotal evidence to show that for many professionals, they believe this should and must happen for the learning disabled person between 16 and 18. The very first time we met Whistler’s Mother she asked when we saw Steven living independently from us. He was not quite 17 at the time. She then spent the next 4 years trying to turn her belief into a reality for him.
I’ve been reading the book, The Modern Judge by Sir Mark Hedley. It’s a fantastic little book, no more than 90 pages but packed with wisdom, humanity, humility and humour. I heartily recommend it. In the book, he tries to tackle the subject of State intervention around independence & quotes from one of his own cases, In The Matter of B (a child) (2013) UKSC 33:
“It follows inexorably…That society must be willing to tolerate very diverse standards of parenting, including the eccentric, the barely adequate and the inconsistent. It follows too that children will inevitably have both very different experiences of parenting and very unequal consequences flowing from it. It means that some children will suffer disadvantage whilst others will flourish. These are consequences of our fallible humanity and it is not the provenance of the state to spare all children all the consequences of defective parenting. In any case, it simply could not be done….”
Adult services are, despite the MCA, person centred ideals, inherently paternalistic and risk averse. It is hard for adult services to follow the principles Hedley talks about. And it is made significantly harder when services have fixed ideas on issues like, the right time for a learning disabled person to be and live independently of their family.
There are so many complexities to the issue that having a template date for independence is nonsense. I’m watching Steven wrestle with these complexities at the moment. Approaching 27, he is clearly experimenting with his independence. For a couple of months I have been with him for 2 hours on Tuesday, 5 hours on Thursday and the weekend. The rest of the time he doesn’t want me there. He doesn’t want the support workers around either and keeps sending them off to his room. In truth, he hasn’t needed me for practical day to day stuff for ages. He does still want me around though for an emotional need that only I can meet. Just before I left yesterday, he called me back to go through a picture in the photo album with him. He wanted to share the whole story of everyone in the photo, how they were related to each other and what were the videos on the shelf in the background! Nobody else but me could have done that with him because nobody else had been around for those original memories. If that is a dependency, it is a dependency we all share for all of our lives. Think of the huge psychological boost you receive when you meet up with an old friend and share a trip down memory lane. Learning disabled people have that need too.
One of the 7 Days of Action families are going through something similar. The dude is 19 and has been in an ATU for four years. The Responsible Clinician is ready to discharge him but only to a supported living placement. He believes the family won’t enable his independence if he moves back home. He may be right but how does his stance fit in with the Hedley quote? I find it impossible to discuss these issues on social media. Nowadays, everybody is encouraged to have an opinion on everything. Advice is given, even when it’s not been requested. There is no space for complexity at all. In this case, I believe that only one person is “right” and that is the dude himself. Is the RC right to decide when the dude should be independent? Is the mother right? In its starkest terms, our independence has nothing to do with anyone else. If it is forced, it is likely to backfire terribly and lead to feelings of rejection and abandonment. If it is refused and the person is forced to remain dependent longer than they wish, that will backfire too and lead to feelings of resentment and bitterness.
The time is right when the time is right. It can’t be forced early or postponed until later. It will be driven by the person themselves, no matter how much they are deemed to lack capacity. As Hedley says, lives, especially family lives are messy but to engineer something that isn’t natural for the learning disabled person, or anyone for that matter, is fatal.
Steven is struggling and will continue to struggle as he teaches himself about his independence. He will cock up; he will get confused; he will get upset. But if I try and step in to “make it alright”, I will do more harm than good. He has to work with and through his own complexity.
Just like the dude in the ATU. If the experts and adults allow him to.