Last week at The Small Places blog, Lucy Series wrote a brilliant post about the challenges on people’s human rights if they are living in an institutional setting. How the rights and choices, that those of us not living in care homes take for granted, go out of the window, no matter how benign or enlightened the culture of the care home may be.
It made me think about Steven’s time at the positive behaviour unit in 2010 and how much of his usual life had to be compromised. he was expected to be tolerant of a whole set of rules that simply don’t apply at home; not because I don’t set rules but because they are not needed in the home environment. And those rules required Steven to be empathic to other residents, to the staff, to the ideologies of the local authority and as we know, autism and empathy don’t normally go together. By the way, this post isn’t meant to be a criticism of the unit; it’s just an examination of how much a person gives up when they enter a care home. I reject though the comparison that other s have made between life in a care home with the communal living, with a group of students living together. As someone wrote on Twitter, a student is not going to have their lecturer enter their flat and tell them they can’t drink, can’t smoke or have sex.
Back to the positive behaviour unit and the first thing that both Steven and I found difficult was that the resident’s guests weren’t allowed in their rooms. The first time I visited Steven there he led me off to his room but the next day I received an email from the manager to say that it was prohibited. He gave two reasons: preserving the privacy of the other residents and ensuring my safety. I never understood that; we were going to Steven’s room, not the other resident’s. And as to my safety, that seemed to stem from their risk averse culture and bore no relation to the relationship I have with Steven. So, not being allowed to share quality, private time in his room, my two hourly visits took place in the dining room. I used to visit on a saturday afternoon and tried to stick to Steven’s favourite routine from a Saturday afternoon when he’s at home, which is a music session. So, I used to prepare a C90 tape and take along Steven’s ghetto blaster for a familiar music session. Except that we were frequently joined by other residents, interested in what was going on. Or we’d be interrupted by staff coming to get the evening meal out of the freezer. Or by staff coming in to check on my safety! Each interruption would make Steven more agitated and I grew to loathe those visits. In every other relationship in my life, if I want to spend two private hours with that person, I can pretty much guarantee we could achieve that. And yet, I could never get it ,with the most important in my life for just two hours a week because of the unit’s rules and the needs of approximately twelve other people.
Another very problematic area during the year in the unit was bathtimes (I can’t bear to use that institutional phrase “personal care”). Steven made it very clear that he was uncomfortable with women supervising his bathtime; reasonable for an awkward young man. Bear in mind that this job including someone applying his excema cream to his private parts and it becomes even more understandable. However, Steven was at the mercy of the shift rotas and on many occasions there were only females on duty. Inevitably, this led to several of the incidents of “challenging behaviour” that the unit meticulously logged and which they used as their rationale for keeping him away from home. The solution was simple; send him home or respect his wishes. I am a man. His support workers at home are all male. But I was told that he had to accept a multi gender staff team. Can you imagine the outcry if any of the female readers of this blog expressed their discomfort about a man being in their bathroom, only to be told that it was okay for that man to apply soothing lotion to their breasts? No, of course, you can’t imagine it because it would never happen. person centred care goes down the plughole.
There were a lot of other examples. Here are a few:
- How do you explain to an autistic man who has watched Countdown every week day for the past fifteen years that he can only watch it once every four days because he has to take into account the viewing requirements of four other residents (and the staff – I remember Wimbledon fortnight when all the residents were in their rooms but all the staff were glued to the TV). Oh, and he can’t have a TV in his room because bedrooms are out-of-bounds during the day.
- How do you explain to a young man in 2010 that he has no computer access and he has to forgo his three times a week Youtube session. This is complicated for the young autistic man as he can see there are three computers in the office that seem to be working fine. At home, if he suddenly decides he wants to watch the Fine Young Cannibals singing Johnny Come Home, he can because he has his own computer. Having a computer that is only used for spreadsheets about client behaviour patterns isn’t something that is part of his normal life and he doesn’t really get it.
- How do you explain to a young autistic man who in the past 15 years has been able to eat a whole bag of crisps once a day all to himself that he has to empty that one bag of crisps evenly into four bowls and be shared with the other residents? Whilst on the subject of food, I don’t buy foods that I don’t like. Or if I go into a restaurant and there’s nothing on the menu I like, I walk straight out again. Unfortunately, in an institution, if you don’t like the one dish on the menu, you go hungry.
I bought Steven a mobile phone whilst he was away but unfortunately, he couldn’t get the hang of selecting from the four numbers I put in it. So, if he wanted to speak to me, his mother, his uncle, or his friend, he had to ask and wait for a phone or a member of staff to be free. And even then, he wasn’t allowed in the office, so had to conduct a conversation in the main lounge in front of all the residents and staff.
I wrote in “Get Steven Home” about Steven’s person centred plan. People who don’t live in institutions don’t have person centred plans; they have the freedom to be as person centred as they like and god forbid, not even have a plan in their lives. Steven came up with six things for his person centred wish list:
- “Want to live in the Uxbridge house forever and ever”.
- “Want to open my Christmas presents in the Uxbridge house on Christmas Day”.
- “Want to go on holiday to Somerset”.
- “Want to have sausage and bacon in Rip’s cafe”.
- “Want to go to Hampton outdoors swimming pool”.
- “Want to see Toy Story 3 at the cinema”.
All six things were refused. because they were passed through an institutional funnel. I’ll never forget Justice Peter Jackson questioning the safeguarding manager about number (3): “So, you can’t go on holiday if you’re under a DoL? Really? Good heavens! I’m shocked!”.
Needless to say, since Steven has been home we’ve done all six: you can express yourself and get your needs met without a person centred plan. Who’d have thought!
You might ask who was bothered by all this; me or Steven? Well, obviously by the tone of this post it bothered me (and still does). But, I witnessed Steven’s agitation when our brief, valuable two-hour Take That session was repeatedly interrupted. I’ve read the umpteen incident reports, so have seen how problematic it was for him having a female do his bath. And since Steven has been home, he has never once chosen the Alan Titchmarch show on ITV1 over Countdown!
When I lived in a communal house, it was bedlam most of the time. Sometimes we were mature enough to negotiate. And I could stand my corner over expressing my wishes; I didn’t have someone telling me that I lacked capacity to make a decision about what I wanted. If my fellow tenants wanted lasagne, I’d go out to the Wimpey Bar. I had total autonomy over who scrubbed my bollocks.
I’ve read this post back and clearly there are things that I am still angry about. But this isn’t a rant post; I hope it’s a post that adds a bit of flesh to the experience of institutional living. And perhaps illustrates that dead normal human rights are terribly difficult to uphold in an institution.