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June 17, 2018

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.


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  1. Andrew Sinclair permalink

    Mark, I’ve been following your blog and your life with your son for quite some time now but today of all days I thought I’d just wish you Happy Fathers Day even if you, like me, doesn’t really care much for it. I have four children, the eldest is at university and the youngest just started senior school so life is reasonably good in our house and most of the time we have a pretty sensible family life however, compared to you, I’m pretty inadequate as a father. Please accept a virtual rubbish card from the supermarket and tacky mug saying ‘Worlds best Dad’ on behalf of everyone inspired by what you do for Steven.

  2. Pauline Thomas permalink

    It is absolutely heart warming to know that Steven only began to talk when you and your wife came into his life. That is the power of love.

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