A Little Bit Of Pamela

One of the support workers was asking me yesterday for a day off because he has to attend some refresher training for one of the leading charities that he also does some work for. As well as the work he does with Steven, he is also part of the bank staff at a residential unit for up to 8 people with autism and learning disabilities. The only day that clashes with when he is due to be with Steven is for his annual refresher training in “assessing risk behaviours”. He doesn’t want to go but knows that he has to if he wants to remain on their payroll. We talked about the irony of that particular charity running a “assessing risk behaviours” course because they have no insight into how their practices and compromised position as a provider probably creates the greatest risk to the resident’s well being. He regularly turns up for work there to find just one other member of staff on duty. Trying to keep 8 people safe under such threadbare resources means that whole shift is spent firefighting. As he said, boredom is the greatest risk for the residents and their whole lives are determined by it.

This attitude was mirrored this week as both Ray James and John Trevains issued blogs, 7 weeks after the Leder report was sneaked out. Both pieces of writing are too depressing to go into but one thing that struck me was the complete absence of any ownership. The solutions to the problem (when a solution is even mentioned) are always out there. For someone else. No recognition of the part they might be playing in the problem existing. Worse, no recognition that their tawdry response actually accentuates the problem. No person with a learning disability or their families could have read either blog post and been reassured by the content. The palpable fear that has been expressed since Leder would surely have been cranked up a notch or two after their wet responses.

I don’t think taking ownership has to be that hard. I’m not talking about Jeremy Hunt and his obsession with a “no blame” culture. Blame only becomes a factor because people are unwilling to take ownership. Whenever we have an “incident” in the Cowley house, we sit down and the first question is always “what part did I play in that happening?” It’s not about flaying someone alive: It’s about trying to prevent it happening again. I like to think that I’ve created an atmosphere among the support staff so that we can talk honestly when things go wrong. For example, I’m going to a client’s wedding on Tuesday morning and it’ll mean that I’ll be an hour late for my normal visit to Steven. I can prepare him for this but the change to routine is likely to prompt anxiety. I’m not going to do anything differently but it’s important for me to acknowledge that my decision may have a negative reaction. Likewise, tomorrow’s support worker is looking forward to decorating the bathroom. I didn’t even ask him! That positive moment could backfire if it means curtailing some of the interaction he would normally have with Steven on a Monday afternoon. Blame is inevitably associated with doing something wrong. Risk behaviours, for what they are worth, can also occur when we are doing something right.

The title of this post is a nod to two people. Pre personal budget, Steven’s support came from an agency run by a woman called Pamela. She had the sort of stuff I’ve been writing about spot on. She knew that she had to do mandatory refresher training but the most valuable time of the month was our Thursday evening meetings. All the staff had to attend and so did me and Steven. She created a space where it was relatively comfortable to talk about any shit that had gone down in the previous month. It used to be interesting watching new staff adapt to this approach. Initially defensive and wary, they soon realised that for her (and me) nothing bad would happen to you if you are totally honest. I don’t think blame or no blame ever came into the equation.

It’s also a nod to Lou Bega. I mentioned recently that Steven loves to forensically examine a photo with me each visit. Once we’ve gone into what everyone is wearing, what dvds are on the shelf in the background and what music is playing at the time, Steven will end the conversation by throwing in a name of someone who is totally incongruous to the subject matter of the photo. Yesterday, we were looking at a picture of me swinging Steven upside down when he was about six. You can see that Fawlty Towers is playing on the telly in the background. After a long discussion about Sybil Fawlty driving over to Babbacoombe, Steven threw in the curve ball. “Lou Bega” he shouted. I’m expected to run away with his joke and have to say things like “Did Mark Neary swing Lou Bega upside down in the Hillingdon house?” “Did Lou Bega fall off the ladder when he was looking in the girl’s room?” Steven falls about laughing at his own joke and it marks the end of the photo discussion.

So, just throwing this one out there. The way we often deal with assessing risk behaviours in the Cowley house is to have a bloody good laugh. I’m no PBS expert but it seems to work.



It’s Father’s Day today. It’s never a big deal here in the Cowley house. It’s not going to occur to Steven and there isn’t really anyone who will remind him so it’ll be a business as usual Sunday. That’s okay.

Being Steven’s Dad has been on my mind a lot since Friday. I spoke at a conference in Leamington Spa and travelled up the afternoon before I was due to speak. It was at the conference that I had an unexpected, very emotional reunion. Even though I was sleeping in a strange room and had gone to bed late, I still fell into my recent habit of waking up at 5.30am. The hotel had a gym, so I was in there at 6am and did a 45 minute workout. After breakfast I sat outside the hotel and noticed someone heading in my direction. It was the social worker who assessed us for adoption and found us Steven. It must have been 22 years since we’d last met. After the conference she gave me a lift all the way home and it was great to travel down memory lane as well as catching up on the present tense. She had remarkably clear memories of those days all those years ago and reminded me of a couple of things that I’ve forgotten.

We talked about how Steven and I connected during the “introductions” week. As this is my only experience of being a father, I don’t know how it is for other people – when do you start feeling like a Dad? For me, the connection happened before we even met. We were shown a video of Steven at a birthday party and, having been told that he had no speech, I clearly heard him say the word “sausage” that nobody else in the video seem to hear. I suspect that is the same reason why Steven connected with me so quickly – he had someone who was prepared to listen to him. The first day we met we went to the park and I was carrying Steven on my shoulders. As we walked along, he would tentatively whisper things to me as he spotted them: “A bird”, “A tractor”. I would instinctively repeat back to him what he’d just said and he became beside himself with excitement. A few days into the introduction week and we went for lunch in a local Wimpey. His class from school were in there and Steven went round their table, hitting each kid and teacher on the head and pointing out “Steven’s Daddy”. They were all astonished because in the six months he had been attending school, they hadn’t heard Steven speak once.

The theme of the conference was “Risk and Rights”. I wanted to pose the serious question – does the language of social care and its need to turn people into objects pose the greatest risk of all to people with learning disabilities? It was a bit heavy for a 25 minute slot but I wanted to see if there is any connection between the “othering” of disabled people by the professionals and the appalling data revealed in the #LeDeR report that shows learning disabled people die on average 25 years earlier than their non disabled peers? The “not quite human” framing happens very early on in the process, so are early deaths an inevitable consequence of that? I can’t do a concentrated serious talk, so I used the time as an opportunity to tell some of Steven’s funniest anecdotes. Those times when he’s come head on with Hillingdon’s relentlessly unforgiving attitude towards risk. I told the Take That & Lulu story, the throwing the risk management folder off the balcony story and the story from his time in the ATU where Steven was acting out an episode of Mr Bean but they logged it as a “matter of serious concern over the aggressiveness of his outburst”. I ended the talk by bringing things right up to date and read them some quotes from the recent Community DoLS assessment. I mentioned a conversation I’d had with one of the support workers about the report and that I’d observed, “we take the risk of letting Steven take risks whilst their attitude is all about eliminating risks”. From the feedback I received afterwards, the one thing that stayed with the delegates more than anything was a rather throwaway remark I made – “Can you really assess someone if you don’t really know them?”

Steven likes shared stories from the past, so I think he would have liked me telling these stories at the conference. Yesterday, back home, we did what has become a regular bit of “positive social engagement with his primary carer”. Everytime I see Steven these days, he will take out a photo from the album and want to talk about in great detail. There are usually lots of people or things in the photo and he will want a thorough background to everything. Yesterday’s photo was unusual because the only two obvious people in the photo were me and him. It’s a photo taken outside our house and I’m teaching Steven to ride his scooter. It was 1996. It took about 30 minutes to go through the whole photo. What we were wearing. Who owned all the cars parked down the street. What the owners of the cars were doing in that moment (“Olive was eating a green Club biscuit”). Who were those specks in the distance in the photo playing football on the green? What song were we listening to at the time (The Beautiful South – Don’t Marry Her)? Where was Julie Neary? (She was in the kitchen cutting her toenails). Over the years these stories become part memory and part flights of fantasy. Steven adds some bits to the story; I add bits that make him laugh. I chose that song because Jacqui Abbott swearing (Don’t marry her – fuck me) makes him crease up and he pretends to be Dave Hemmingway and says – “Right Jacqui Abbott – off to the bathroom and wash those dirty words out of your mouth”.

Most regular readers of this blog will know that my favourite film is Field of Dreams. Steven is never going to be interested in having a game of catch with his Dad but I suppose the shared photo stories are his equivalent of that.

Silly DoLS Talking

After 16 months of assessments, changes of social workers, endless paperwork, yesterday I finally got the completed paper work for the Community DoLS. I’ve written at length about the process before and hopefully, this will be the last post on the matter.

As a quick reminder, the concept of Community DoLS came about as a result of Lady Hale’s acid test ruling in the Cheshire West Supreme Court appeal. A person is now deemed as being deprived of their liberty, regardless of where they live, as long as they meet the two acid drops of the acid test – are they free to leave and are they under constant supervision? If they aren’t free to leave their own home and are under constant supervision then they are being deprived of their liberty. That kicks in those two lengthy and cumbersome processes: the mental capacity assessment and the best interests decision.

In Steven’s case, the mental capacity assessment has been the most time consuming. For ages, the big question that nobody seemed to be able to answer was: does he have or lack the capacity to do what? In the end, having decided that it was the very substance of Steven’s care arrangements: the 24/7 support in the home and the 2:1 support when he goes out that was the deprivation of his liberty, the focus of the capacity assessment became “does he have the capacity to consent to his care arrangements?”. If the answer turned out to be that he lacks capacity in this area then the professionals would have to make a decision as to whether it is in his best interests to have these care arrangements and whether they were the least restrictive for his care. Considering they had already agreed to the care plan long before the Community DoLS appeared in the ballgame, the second aspect of the process seemed to be a foregone conclusion to me.

Are you keeping up? Have you got the capacity to take all this in? It could be you one day!

So, the paperwork has been completed and the bottom line of the assessments are that they have decided that Steven lacks the capacity to consent to his support arrangements but it is in his best interests and the least restrictive option for his care to have those support arrangements in place. Through the acid test lens, the very stuff that gives Steven his liberty is now seen as depriving him of it and the paperwork will shortly go to the Court of Protection for its authorisation.

I’ve already tweeted several of the highlights/lowlights of the report but I feel they deserve greater analysis as this is the process that every learning disabled person in the country will be going through at some point in the near future (if they already haven’t done). I want to say that I’m not knocking the capacity assessor or the best interests assessor at all. They were tasked with an impossible mission. They were both meeting Steven for the first time. They were allocated about an hour to do the interviews. They were just pawns in this very silly game. And at the end of the day, they did both arrive at the only conclusion they could have done under these circumstances.

But. The assessments and outcome say nothing about Steven at all. He has so much more going for him than either assessor was able to elicit. Anybody that knows Steven will read the assessment and despair at how so many points were missed to really engage with him and would have given him and evens chance to display his understanding and wisdom. The fact that the assessments sail right pass the real Steven is no comment on him at all.

Here are some direct quotes from the report with my thoughts:

“I asked ‘Where do you live?’ Steven said ‘Cowley House’ and pointed at the floor. I then asked him where is Cowley near? Despite offering this question a few times, Steven repeated his previous statement”.

Okay, Steven was able to say where he lives. I don’t understand what the question about where is Cowley near has got to do with anything. Does geography come into a mental capacity assessment? Steven knows that his house is near to Uncle Wayne’s and Jay’s sweet shop but I don’t think he would have answered that from the way the question was phrased. Has being able to judge distance got much to do with demonstrating your mental capacity?

“I asked Steven if he lived with other people. Steven said yes. I asked who these people were. Steven said “Mark Neary and Des and Alan and Chris Young. I asked Steven ‘who cares for you?’ to see if I could help him make a distinction between these two concepts. Steven mentioned many of the same people above. I repeated the question and Steven repeated his response”.

What is the correct answer? Those people do live with Steven, in his eyes. They eat and sleep in Steven’s house during the week. Steven is remarkably comfortable in his own skin and doesn’t see himself as dependent on others. He certainly doesn’t carry the emotional baggage that people carry when they need to rely on others for support. To him, life is much more straight forward – these are people in my life who I do things with.

“I asked who takes Steven swimming. He said ‘Michael and Alan’. I asked Steven whether he would be safe to go swimming by himself. He said ‘no’. I repeated this question and he said ‘yes'”.

He gave the correct answer. He does go swimming with Michael and Alan and he knows that he can’t go by himself. Asking the question is dodgy psychology. Steven is very eager to please. He probably assumed that he had got the answer wrong first time and was being given a second stab at it. I dunno but that strikes me as a little cruel.

“We talked about cookery. Steven gave me the answer first that he cooked his meals and when I asked him a second time he said that staff did so. The support staff pointed out that both are true; Steven is able to use the microwave by himself but freshly prepared meals are made by staff”.

Thank goodness that the support workers were able to point this out. Without their intervention Steven’s reply would have been filed away in that category of not understanding the question.

“We talked about what Steven would do if there was a fire in the house. Steven became distressed at the idea of a fire and did not pay heed to my question about what he might do in such an instance. I moved on from this questioning after reassuring Steven that there was no fire in the house at the moment”.

This one seriously pisses me off. For two reasons. I accept that the assessor couldn’t have foreseen that his question would have caused distress. The fact that he mentions it in his report suggests though that he still doesn’t realise that it was his questioning that caused the distress. Steven does know what to do in the event of a fire. Anyone with even a tiny knowledge of him will know that he follows the Basil Fawlty procedure to fire safety. Many years ago we were on holiday in a caravan. It had a gas cooker which we had never used before. I was outside on the sun lounger one afternoon when I heard him shout: “Fire. Fire. Everybody out now please” and he proceeded to lead Julie by the hand out of the caravan. He thought the gas ring was on fire and demonstrated that he knew the premises needed to be evacuated. But of course, when you take your life cues from Basil and Mr Bean, you’re hardly likely to be seen as such during a mental capacity assessment.

“I showed Steven a picture of bleach and cleaning products. I asked Steven to identify them and he said ‘soap’. I asked Steven who used them in the house and he said ‘Des’. I asked Steven if he used them and he gave different answers on the first and second occasions I asked”.

Again, Steven gave the correct answer. Des bleaches the kitchen floor every Monday afternoon whilst Steven is watching his DVD. And another example of asking the same question more than once. It just seems destined to trip the person up.

At this point in the assessment, the assessor returned to earlier themes. Steven slips into echolalia. To me and the support team we know that is a sign that Steven is tired or tense or both.

“I asked about going out – again he told me who took him but did not respond when I asked if he was safe to go out alone – repeating my question back to me”.

Tortuous, isn’t it?

Then came the first bit of humanity during the whole assessment. Thank goodness we’ve got Des on our team:

“I asked the support workers whether there was any other way I could communicate these questions. Des said that Steven understood much of what i was saying but that I wasn’t giving him enough processing time”.

I cried when I read that paragraph. Thank you Des. He’s right. It can take Steven a couple of hours, a couple of days, a couple of months to process stuff. Putting pressure on him or trying to trip him up isn’t going to speed up his processing time and ability.

The final paragraph reads:

“Whilst Steven seemed to indicate that he was happy with his care and support and his home, he did not understand the information relevant to the decision which he would need to weigh to make a decision to the question at hand”.

Does that make sense to anyone? It’s very clumsily phrased. Whatever it means, it feels like the whole assessment was geared to produce that outcome.

There’s been some very supportive feedback on social media. This from Rob Mitchell:

“The failure is that the assessor hasn’t enabled Steven as per Principle 2. A series of questions aimed at catching him out, proving incapacity, ticking the box, keeping Steven in his place & moving on.”

And this from Dicky Biscuit:

“It’s the BIA’s skills at communication being tested not the P’s. Considering the power imbalance betwen P and the BIA, BIA asks a question and gets an answer. BIA asks question again (Why??). P, unsure if 1st answer displeased BIA, gives a different answer. BIA finds incapacity.”

In a year’s time the whole thing will start all over again. I imagine that Steven won’t see either assessor before then so any chance of building a relationship and getting a better understanding of how he operates won’t happen.

I was discussing the report with the support worker this afternoon and we were both unhappy with two references within the report to Steven becoming “distressed”. How can we make this silly process less distressing for him next time? The truth is we can’t.

Steven heard us talking and wanted to know more. I was at a loss. And then true to form, Steven came to my aid. He dismissed what I was saying as “silly talking”. That gave me the idea. Next year we’ll say: “A man is coming this afternoon to play a silly game and do some silly talking”. He can cope with that. It should take some of the tension away. We had to explain Gladiators to him in much the same way when he got worried that Hunter was really trying to take the contender’s head off with his pugel stick. It’s not real. It’s a silly game. Just like a Community DoLS.

Only I know that it is real. It’s abusive. It’s disrespectful. And it’s the type of practice that leads directly to the way learning disabled people are treated as horrifically presented in the #LeDeR report.

But who gives a toss when there’s paperwork to be done.

Uncle Frank & 2018

I woke up on Saturday morning to an email from ancestry.uk, informing me that I had 91 new notifications.  Naturally, I rushed over and found that they have uploaded the 1939 census register. I was a bit thrown by this because I had always believed that the protocol is to wait 100 years before releasing the data. I was expecting to have to wait until 2021 before I could next update my family records. And why did they do a census in 1939? was it because they knew that shortly people would be scattered all over the place and wanted a record of where everyone was at the start of the war.

Anyway, among the 91 notifications, was more information about my Uncle Frank. Regular readers will know that Uncle Frank was my father’s brother who I didn’t know existed until long after he’d died. From the little data I’ve manged to glean so far, I was pretty sure that Uncle Frank had some form of learning disability. Last year, I discovered that he spent the last two years of his life in an institution in Derby after living all his life with my grandparents. He was 40 when he died in 1957 (LeDeR report?) two years before I was born.

In 1939, he was 22 and living at home in Southall with his parents, my father and two of his sisters. In the column headed “Occupation”, Uncle Frank is classified as “Permanent Invalid”. It’s the first time I have seen any confirmation that he had a disability.

For a few minutes I felt myself getting cross. Why had the family kept his existence so secret? My anger didn’t last long. We’re talking 60 years ago. My family were very much of their generation and class and lived by the mantra that the world shouldn’t know anything about our business. I’ve often wondered whether it’s about shame but I don’t think shame even comes into it. I suspect it’s as basic as what goes on behind the net curtains, stays behind the net curtains. They also put a great deal of value on self reliance. They wouldn’t have expected help from outside (even if it was there to be given which is doubtful). As his parents, my grandparents would have done their duty and expected Uncle Frank’s siblings to chip in where they could.

Fast forward 60 years and this attitude seems almost ludicrous. There is no differentiation between our public and private space anymore. I’m a part of that as much as anyone. When I write this blog, I’m ripping down our net curtains for the whole world to see inside our Cowley home. When we post a photo of our breakfast on Instagram we are broadcasting our business to the world.  We cannot stake a claim on privacy. To compare the times is pointless.

Needless to say, I do compare the times. Foolishly. What would Uncle Frank’s life be like today? What would Steven’s life had been like back then? A couple of things haven’t changed. The language may have changed but the “othering” of learning disabled people still persists. Only a few years before Uncle Frank’s time, his occupation would have been “an idiot”. By the late 1930s, that had become “permanent invalid” and I guess somewhere along the way, that morphed into “spastic” before we got to where we are today. It still marks him out though. That one column emphasizes the difference between him and his siblings. Whether it’s 1939 or 2018, does it need to be mentioned at all?

The other striking thing is that he died at 40. Apart from one his brothers who was killed in the war, all of his other siblings lived well into their 60s and 70s. He died 20 years earlier than the rest of them. They all lived in the same house. In the same town. With the same parents. They would all have eaten the same fish and chips every Friday night. And yet Uncle Frank “had his time” 20 years earlier. This all sounds very familiar.

Over the past two years I’ve felt quite close to Uncle Frank. I don’t know him at all, of course, but I feel the connection. My relationship with time is peculiar. Sometimes, thinking about Uncle Frank, it feels like I’m thumbing through an old sepia photo album of a time that I know nothing about. At other times, it feels like I’m looking into a mirror of 2018 and Uncle Frank is staring right back at me.

Rightful Lives: An Update

It’s now four weeks since I published the post launching the online exhibition – #RightfulLives. The exhibition will have a theme of Human Rights & People with Learning Disabilities”.

The initial response has been phenomenal. Thank you so much. People and families from across the world of social care have got involved and started to send in their exhibits. We have been particularly bowled over by the many contributions from people with a learning disability. Sorry to be a tease but we’ve got some cracking demonstrations of people’s creativity to include.

This post is a gentle nudge to those people who read the initial blog and thought they’d like to get involved but haven’t decided what to contribute yet. Or you may have missed that first post completely.

Getting involved couldn’t be simpler. Email your idea to: exhibition@rightfullives.net We will send you an information sheet and a consent form. We will also send you a link to the Dropbox where you can upload your exhibit. Job done.

What can I submit? The brief of the exhibition is very wide and as long as people stick to the theme (Human Rights and People with Learning Disabilities) you can be as creative as you like. Good and bad stories of how human rights serve/don’t serve people with learning disabilities. We don’t want to be prescriptive but already we have received artwork, films, written submissions, photos. We’ve had offers of performance art (a choir, stand up comedy) that will be streamed on the exhibition site. We’ve even had an offer of an interactive human rights game. The world is our lobster.

Following the first wave of responses, the curating team have made a couple of decisions. Firstly, we need all contributions to uploaded via Dropbox. Please do not post your contributions on Facebook or Twitter. Whilst we oversee those accounts several times each day it is easy to miss something important. Also, and frankly, if we have all the exhibits in one place it’ll make it simpler for us once we start to assemble the final exhibition.

The consent form is important. Especially if you are using images of other people. Or it may be that the person lacks the capacity to consent to the image being used and therefore you need to make a best interests decision on their behalf. We cannot accept contributions without the consent form.

Finally, we’ve been contacted by several organisations about exhibiting work produced by them. This is absolutely fine and welcome, although the curating team will need to ensure that the exhibition is not being used as a vehicle to plug the organisation. The artist and the subject of the art must take precedence.

The deadline date for submissions is 10th August.

The exhibition will be held all week from Monday 24th September.

You can follow us on Twitter @RightfulLives

Or you can visit the Facebook group at: https://www.facebook.com/groups/445617982552189/

Many many thanks from all at the exhibition team and please keep those storming ideas coming.

As a final teaser, Jen Fookes has submitted a whole collection of her art for the exhibition. Here is just one of her pieces, “I’m A Package”:

2018iamapackage (2)_preview