Such a sad time at the moment.
Steven got banned from Virgin Active yesterday. he started to have a meltdown just as they arrived and hit out at one of his friends. I wrote recently that a couple of the women from the water aerobics group had started a petition to have Steven removed because of the noise he makes in the cold shower. I guess that Steven unfortunately, gave the manager the ammunition he needed to instigate a ban.
This post isn’t a criticism of the club – the manager has made a decision and that’s that. He may have made the right decision – he may have been a bit more tolerant and negotiated a trial period. I don’t know. Even one of my closest friends text me last night to say: “I’m with the gym on this one”. So, who knows? It’s done now.
My sadness is that it brings about another loss for Steven. When we run through his timetable for Tuesdays and Thursdays, he reels off a list of his friends that he is looking forward to seeing there. In particular, he is very close to T, the guy he caught yesterday. Despite a 50 year age difference, Steven has built a phenomenal relationship with T in the five years he has been going to the pool. Every year, T buys him a Christmas present and back in 2010, without asking, T wrote a testimonial of Steven for the court case. We spoke on the phone this morning and he was really upset by the ban and asked me if he could still pop over to see Steven at Christmas. Writing that brings a huge lump to my throat.
But for all his other friendships at the club – they’re finished. And that has been the pattern for most of Steven’s life. Neighbours move away; support workers leave abruptly – it’s that awful situation that we all experience in life where someone is more important to us than we are to them. As the day has wore on, two of Steven’s other friends called me to express their dismay over the ban. One told me something very interesting that I’m sure fed into the manager’s decision. He said: “We were talking and obviously Steven is getting more difficult if he needs three workers with him”. We’ve had an extra worker this week because it’s a new guy on induction for two weeks. But an assumption was made, and a helpful assumption in justifying the position.
There’s also a terrible ache about the massive difficulty for Steven to take his place in the community. Last week, I wrote that a learning disabled person doesn’t enter the community from the outside – they are the community. But it’s hard to be part of the community, if some members of that community are hostile to you and don’t want you there. I’m sure the women from the water aerobics group’s lives are much cosier now they don’t have to experience Steven shouting when he gets under the iced water bucket. From a cold shower to a cold shoulder in 24 hours. It all leaves the unanswerable question for me – how does Steven carve out a place for himself in the world? Do we take the Hillingdon line and lock him away for fear of what he might do? If not, how does he find his place?
I got the ban letter from Virgin Active when I got home tonight. Steven has breached their club rule that applies to getting drunk and starting a fight. Don’t really know what to say to that.
Tonight, the Mencap pool reopens. It is the safest place in the world but it doesn’t count in the context of this post. Sometimes it can be chaotic there but there’s always a tolerance there. And a humanity. And nobody judges. But that’s a very tiny oasis for two hours, twice a week – the rest of the week is a tightrope of tension as we navigate the “normal” world.
When I spoke to the manager at the club yesterday, I found myself telling him how Steven’s anxiety about the move/non move has been increasing. In the last week, the anxiety has started to seep out from the night times into the daytime. Steven is needing extra reassurance before he goes out of the house that he’s coming back home and not going to be carted off to the unit. I stopped myself short though – he wasn’t interested. And perhaps the manager and my friend are right. Perhaps one man’s anxiety is irrelevant in the greater scheme of a swimming pool community living an undisturbed life. In disability law, we have “reasonable adjustments” but as events at the club have shown. some adjustments are too unreasonable for some. It won’t ever change, so that’s why that sort of pain, that sadness, that loss will always be present in our life.
I was going to end there but on the way home from work I nipped into the cafe for a coffee. At a nearby table was a disabled woman in a wheelchair and her carer. The disabled woman was eating a poached egg on toast in a rather haphazard manner. Two women on the table, kept tutting and rolling their eyes and eventually called the waitress over and asked her to move the woman and her carer. The carer was brilliant and pointed out that if they were unsettled, perhaps they should move. That only served to outrage them ever further and then my bus came, so I don’t know the outcome. But it struck me as familiar.
How do we live together?