Skip to content

And The Moonbeams Kissed The Sea

I’ve just been watching an episode from season two of Lewis. One of the central characters of the story is Phillip, an art student who is autistic. The second murder victim is another art student called Nell. There are several early scenes between Phillip and Nell and their relationship is sensitively portrayed. As the story progresses it is clear that Nell was the only character who cared for Phillip. In a way it was a love story, although Phillip didn’t seem to appreciate or respond to her love. To all the other characters Phillip was seen as an irritant, or tolerated, or seen as “interesting” or “a weirdo”. When told that Nell was dead, Phillip didn’t cry or ask questions but carried on with the landscape he was painting.

It got me thinking about love. Steven doesn’t do hugs. He doesn’t cry over deaths or sad situations. I don’t think he recognises when someone is doing something for him out of love. He never asks questions about love. In songs, it’s a word that doesn’t prompt any curiousity.

My mind went off to a meeting in the ATU. I had complained about Steven’s clothes being damaged, shrunk or disappearing. He was often wearing other people’s clothes, usually several sizes too small. After hearing me bang on about Steven’s dignity, the manager said something so chilling, I’ll never forget it:

“Steven doesn’t seem bothered. This is about your autism Mark”.

This appears to me to be the nub of why so many learning disabled people die uninvestigated, preventable deaths. It also may be why so many people are wrenched from their homes and incarcerated in ATUs for many years.

If the person doesn’t recognise love, does it not matter if love is given?

There’s nothing in the Mental Capacity Act about love. Nor the Human Rights Act. Nor the Care Act. Therefore it’s not surprising that you’ll never see love mentioned in someone’s care notes. If someone is a “case” or an object, then love is never going to be part of the equation.

Connor Sparrowhawk’s family’s love for him was attacked. In the quote from the ATU manager above, my love for Steven was mocked. Or if not mocked, certainly belittled.  1000s of people will spend Christmas in ATUs away from people who love them. Does it matter that they might not understand love?

I don’t hug Steven. That feels uncomfortable and forced. But I will do acts out of love. I’ve been out today and brought his Christmas Pringles. That’s a hug. That’s a little moonbeam kissing the sea. There won’t be a thank you but there will be a smile and a dance when I lay out the goodies on Christmas Eve. Another little moonbeam.

If the State is going to be involved in family life, it has to recognise love.

If not, we’ll continue with a framing of the learning disabled person as the unlovable who doesn’t need acts of love because they may not know how to receive it.

That’s not a life for anybody.

Or am I wrong to assert my idea of a life onto someone else?


Lean On Me

There’s a lot of nonsense written about “independence”. My last blog post, “An Engagement Announcement” was turned by some into a discussion on independence, although reading the post back, I never used the word once. I wrote about my death plan and imagining Steven’s future when I’m no longer around but it was seized upon as an opportunity to espouse about the importance for a learning disabled person to become independent. Of their family.

I’m going to try and not make any assumptions about what independence means and looks like for other families but I can talk about what it looks like in mine.

I remember the shock during the first meeting with the “transition manager” when Steven was 17 when she pushed me to give her a timescale to when we saw Steven living independently. It was my first encounter with the trickiness of what that word really means. Naively, I equated it to what it meant to me when I left home at 19. For me it meant having to learn to cook for myself, pay my bills and consider things that had never occurred to me before – like it’s important to clean the grill pan every now and then.  I saw less of my family but it didn’t mean that I became emotionally divorced from them. At times of trouble, I would still pop back home to be welcomed by my Dad serving up a cold meat pie.

The framing of the transition manager’s question (as she repeatedly explained) was to prepare Steven for a time when I die. Once again, I found this a tricky concept. When he was 17, I was 48. I was in good health. My Mum died when she was 42, so I was acutely aware that there is no set age for dying. I remember that strange feeling when I hit 43 and realised that I had outlived her. But I felt then (when Steven was 17) the same as I feel now – it is impossible to prepare for life after the death of someone you care very much for. And why should you? You’d have to emotionally detach yourself and run the risk of missing out of lots of good stuff between the detachment and their eventual demise.

Our life has changed a lot in the last year. From being around practically all the time, I now spend the weekend with Steven and see him for a few hours on Tuesdays and Thursdays. He looks upon the weekends as me “coming for a sleepover”. It’s interesting that he’s been drilled in service speak and uses the term “sleepover”. I wonder how many non disabled people planning to host family members over Christmas are viewing that as a sleepover.

As I’ve been at Steven’s since yesterday morning, I’ve been thinking about the “independence” question and reflecting on how it fits into the way the weekend has gone. Yesterday, Steven approached the support worker (and not me) and asked him to cook Steven his chicken pie. A year ago he may have asked me. Is that more independent? This morning, he called out for the support worker to do his shower. There’s nothing new there. I can’t remember the last time I supervised the showering. Is that more independent? As I typed the first paragraph of this post, Steven called me into the living room. He wanted to ask why there aren’t any archipelagos in Cowley. I don’t think he would have asked the support worker that question, whether I was here or not. Is that unhealthily dependent? Steven is about to go to the shop to get his Frazzles. He won’t ask me to come. Is that more independent? This afternoon he is planning a Christmas compilation tape. He fully expects me to take charge of that. The full list of Christmas songs is in Section 9(A) of the Death Plan so he could ask the support worker to do the tape but I expect he’ll want to discuss with me who Jonah Louie resembles from his old school (Answer – John, the minibus driver). After the tape, Steven wants to watch his The Beautiful South on Jools Holland Video. For that 90 minutes, he will send both me and Francis to our rooms. He likes to conduct his viewing on his own, giving his own unique running commentary in his own space and time. Is that more independent?

Most of my writing and the thoughts I have to gauge my sense of my world tends to focus on the “small places”. I hardly ever think about independence for me or for Steven. I know that I am just as connected to my Dad as I was when he died 25 years ago. Possibly more so. This morning, Steven chose as his photo of the day, one taken from the school when he lived with his foster family. He hasn’t seen any of those people for 22 years but they still mean something to him. For me, that goes way beyond independence and having the capacity to cook some sausages and spaghetti hoops in a microwave.

The Beautiful South video includes a few guest performances. The show concludes with Sam Moore joining the band for an uplifting version of “Lean On Me”.

We all lean. It’s healthy and important.

Why should it be so different for a learning disabled person?

An Engagement Announcement

It’s been nearly a year since I started to write my “Death Plan”. I’ve found it such a difficult experience that I work on it for a day and then put it away for a month in order to deal with the pain the one day’s work has generated. The point of the exercise was to put together a series of documents that detail all the things that would be necessary for Steven to continue living his life in his own home after my demise.

I’ve finished it. There’s one more practical job to do. I’m leaving that until the New Year and hope I don’t get run down by a marauding reindeer over the next four weeks.

I gave an interview to the BBC about the Death Plan back in the summer and you can listen to it here:

So, how do I feel now that the task is complete? I feel a small sense of satisfaction. I can’t think of anything I’ve missed out and I hope I’ve covered all bases. It all fits into one folder and it shouldn’t take an awful lot of effort for it to be actioned. But there’s the rub. Even if it was just a one page document, it is still reliant on a professional making an effort. On the other hand, it doesn’t need any professional effort at all. I’ve assembled a “team” and it would be totally realistic for them to take over without any professional input. It won’t be too big a challenge for the team but doing nothing will be a huge challenge for any professional. Can they loosen the reins and not demand a personal budget audit every month? I don’t think they can. Can they accept that a humble support worker can manage the online weekly shop? I doubt it.

And it’s because of those question marks that I have very low moments when the whole project feels utterly worthless. I’m aware that the final plan is basically saying to the professionals, “do nothing”. Do the yearly assessment. Pay the money. And leave the rest to the people who care. To the people prepared to make an effort.

The last two days I’ve been following a thread in the Facebook group “NHS England Learning Disability and Autism Engagement”. It’s a heart sink experience. I don’t doubt the sincerity of the people running the group but it’s another example of “engagement” on someone else’s terms. It feels like, sadly, like the appearance of engagement, rather than real engagement. Because so much of social care is playing at engagement, that’s why I fear for Steven’s future after I’ve gone. In an attempt to keep up appearances and pretend engagement, he could have his life ruined.

Why I feel so fearful for the realisation of the death plan was crystallised by a post in the Facebook Engagement group this morning. A call went out for families to engage with an “evaluation of building the right support”. It’s a cruel stunt. It infers that there’s some secret out there that we haven’t yet discovered and until we do, the current dreadful status quo must continue.

We don’t need any more evaluation. We don’t need any more research. We don’t need any more transforming champions. We know all we need to know. We know what people want and what people need. We know what makes a good, fulfilling life. No more illusory engaging. Let’s do some doing.

For the rest of my life, I know my death plan teeters on a knife edge. It could mean that the second half of Steven’s life could be as meaningful as the first. Or it could mean that the life he loves ends.

For the time being I’ll try and concentrate on the engagement he has with in his life and give a wide berth to the pretend engagement of the people who don’t do.

Arfur Scissorhands

This year’s Christmas at Cowley is being sponsored by 1987.

Steven never asks for more than two Christmas presents. Any more than two and they all get lumped together under Steven’s special category – “Lovely Surprises”. Even though they are “lovely”, the additional presents don’t command his attention and too many lovely surprises is likely to lead to a sensory overload and potential challenging turkey behaviour.

A few weeks back Steven asked for his first present:

“Dad. Edward Scissorhands video. Present for Christmas day”.

And later, to make sure I hadn’t missed the salient point:

“Dad. The Edward Scissorhands video. Not the DVD. The video in the white box”.

That present wasn’t too hard to track down. A bargain £2.85 on Amazon.

The second one was a bit more tricky. With December nearly upon us, Steven watched two Top of The Pops Two Christmas Specials over the weekend. (On VHS). The first one had all the obvious suspects on. The second one drew on more obscure tracks. And it was whilst we were in the middle of the most obscure, that the second present request came in:

“Dad. Dennis Waterman and George Cole. What Are We Going To Get For ‘Er Indoors? Christmas present?”

I didn’t even know that Minder had spawned a Christmas hit.

Back to Amazon. Only one copy available. Vinyl. £10.75. From Germany. (Apparently in Germany Dennis & George give Boney M a run for their money in the popularity stakes). Fingers crossed. It’s due to be delivered between 1st and 20th December.

This morning I popped into Uxbridge on some errands. Dawdling through the market, I spotted a Sony Walkman. Steven used to love wandering from room to room listening to his Walkman. We made him a little handle strap and he used to carry it, elbow bent, rather like Mrs Thatcher used to carry her handbag.

Sod it, I thought. We might as well go the whole hog with our 1980s revival. So I brought it.

It’ll be a lovely surprise.


In a blink of an eye, Steven has discovered a new expression that to the unknowledgeable listener may suggest that Steven has spent the last few years in a finishing school. Manners have become the new currency.

It was only a couple of weeks ago that me and the support workers were chuckling over Steven’s complete absence of regard for the other. I’m alright Jack was our coat of arms.

Two examples. One of my new pairs of training bottoms went missing. We searched everywhere for them. Eventually the support worker found them in a crumpled heap at the bottom of Steven’s wardrobe. I asked Steven how they came to be there and he replied, “Steven Neary put them in the wardrobe”. When I asked him why, his explanation was “Trousers was on Steven Neary’s radiator”. Straightforward. They were on his radiator. They weren’t his. He has no use for them. Get rid.

Des, the support worker told me a similar story. He (Des) was in the kitchen preparing his own meal. A dish of chicken and rice, he had ingredients all over the worktop. Steven came into the kitchen and said he wanted his sausage and spaghetti hoops. As Steven can cook them himself, Des left him to it. When he returned to the kitchen, all his food had disappeared. He asked Steven what had happened to his tea and got the reply, “In the bin”. Again, straightforward. Chicken and rice had no place with sausage and spaghetti hoops so had to go.

Overnight, we now have a new phrase – “If you want to”. On Sunday, we were doing a compilation tape and I asked Steven what song he wanted next. “Dad. Have some Gene Pitney. If you want to”. This morning, Steven wanted a private chat, away from the support workers – “Dad. Can you come in the kitchen? If you want to”. He was asking who is going to be working on Christmas Day & when I told him, he said to the support worker – “Francis, you can have white turkey on Christmas Day. If you want to”.

I don’t think Steven has suddenly mastered unconditional positive regard. More likely, is he heard Dr Hanssen say it on Holby City. It’s a totally unexpected development.

I’ve tried to be more like Steven and be more direct in my communication. I’ve been trying not to let my awkwardness over certain social conventions render me speechless. Today, I blew it. The gym I’ve started going to is run by the former Gladiator, Panther. It’s called Panthers. I keep wanting to ask her if I can bring Steven along one day to meet her. Panther isn’t Jet but Steven would still see it as a big feather in his cap. I see her there often but she’s normally in the middle of a workout and I think it’s terribly bad form to interrupt someone on the treadmill. This afternoon, she was on the front desk and I thought “Carpe Diem”. As I approached, her phone went off and for me, the moment had passed. It felt uncomfortable mooching around whilst she took the call, so I went on in and started my session.

If it had been Steven, it would have been very different:

“Hello Panther. Talk to Steven Neary. If you want to”.

Whose Home Is It Anyway?

Two stories hit the news this week that beg the question, if you are living in a care home, is it your home? Or are you a guest in the provider’s home? Or are you an object to be managed within a service?

The first case is about an information document published by the law firm Ridouts to assist the providers of care homes on their powers to exclude family members from visiting someone resident in the home. The full article is here, under the title, “ASK THE EXPERT – Managing The Relative From Hell”:

From the title onwards, the language is chillingly adversarial. “It is your home”. “The visitor, effectively has no rights”. “The expression next of kin has no meaning and carries no rights”. Regardless of its legal rightness, would you want someone with such an aggressive attitude to be running the home your loved one is living in?

Those often used expressions like “working together” and “experts by experience” hold no truck for Ridouts. The home is a thing that takes priority over the people living there and phrases like “It is your home” expose where the power lays. To quote Lloyd Grossman – “who would live in a house like this?” It’s not person centred care – it’s Basil Fawlty care.

The second story is even more alarming because it’s not about excluding visitors; it’s about excluding the resident! John Pring has written an excellent article describing the sorry situation:

Lakhvinder Kaur, a disabled woman in her twenties, explains clearly what she wants from her life: to live in her own home, manage her support and engage in a social life. Surely the aspirations of many people her age, disabled or not. For seven years Ms Kaur has been a resident in a care home. This means she has no tenancy agreement, no choice in the staff who support her, no choice in how she lives her life within the home.

What has Ms Kaur done that has prompted the home to try and evict her? She’s invited friends back for late night visits. Most people of her age do that all the time. She’s insisted only female staff attend to her personal care. In other words, she’s asserted her dignity. There are other indignities but in short, they all add up to a provider affronted because one of their (paying) residents wants to put their life ahead of the needs of the service.

These two stories may be extreme cases but I don’t think so. They may stand out because of the language and the degree of professional violence. But as recent campaigns have shown, there are so many insidious ways that a resident learns that their home is not really their home. Sadly most disabled people whether they be in supported living or assessment and treatment units will have stories of where the power really lies in their home.

Stories like these make me realise how lucky Steven is. Tonight we’re going to see a Queen tribute band. Because he employs his own staff, he hasn’t got to worry about not having enough staff on duty to enable him to go. He hasn’t got to leave the concert early for a shift handover. If he wanted to, he could invite Freddie Mercury back for a late night drink without fear of breaking the house rules. A normal life of a twenty something.

Others are not so lucky. Their home is in A home. That’s a very different kettle of fish.

Independenceonly happens if it fits in with the service.

Tenacious & Squatty

On Monday I gave an interview to the British Association of Social Workers. They wanted a human rights angle to include in their magazine in December to celebrate International Human Rights Day. I really liked the interviewer and he seemed to fully get my repeated insistence that for me, human rights only exist in the “small places”. All the little things in Steven’s life like popping out to buy a pie or choosing his daily DVD viewing wouldn’t be possible without his right to liberty and his right to a private & family life.

At one point during the interview, the interviewer described me as “tenacious” and I experienced a strong emotional reaction. After he left, I even had a little weep over the word. It was only later in the evening that I remembered why. I’ve got an old press cutting from the mid 1950s about my Dad. He was an above average non league player. He used to play inside right and was blessed with a blistering turn of speed. In the Gazette report he is described as “the tenacious Neary”. I’m very like my Dad in lots of ways and so unlike him in many others but I guess that throwaway comment from the journalist got me because it made a connection that I think my Dad would have liked.

The tenacious Neary became a bit of a nickname for my Dad for a while. Slightly sending up but with a great deal of love and respect for him. I can hear my Mum saying to him, “Oi Tenacious. When are you going to mow the back lawn?”

As a kid (and for much longer after) I always wanted a nickname. Most of my mates had one but I could never get one that stuck. Nicknames tend to be appointed by others: you can’t give yourself one and my circle seemed happy with me being Mark. It took me 45 years to get a nickname. Another thing me and my Dad had in common is that we both had our physical strength in our legs. He was quite trim above the waist but had the most enormous quads. They housed the power that propelled his speed and his tenacity. I never had the speed but I had the power. At the gym, I could do deep squats with pretty heavy weights. And that’s where my nickname came from. One morning, I was in the middle of a set of squats and a guy walked in and said, “Hey. It’s Squatty, putting us all to shame”. And the name stuck. For the next few years, in the gym at least, I became Squatty.

Assumptions. Back to the interview. The interviewer told me that his Communications Director wasn’t sure about doing the interview because, given my history, it might turn into “social worker bashing”. Correct me if I’m wrong but I don’t think I do social worker bashing. I bash Steven’s 2010 social worker but she deserves it. I think I’ve made some good online friends with social workers. It was an unfair assumption.

After the interview, and still a bit cheesed off over the bashing assumption, I went off to the gym. It was a Legs & Shoulders session. This is my fifth week of being back in the gym and to date I hadn’t done any squats. This is partly because I know I’m approaching hip replacement material and I’m not sure my hips are up to such a pounding. But moreover, it’s pride. Squatty’s squatting heyday is over and that’s a rather bitter pill to swallow. Foolishly I also didn’t want a public showing of Squatty’s demise. Another stupid assumption. I wrote before that, at 58, I’m invisible in the gym. It’s a different gym and nobody knows Squatty anyway. So ignoring the audience that only exists in my head, I loaded some piddling plates onto the bar and squatted for the first time since 2012. A bit less vanity and a bit more tenacity.

I remember a conversation with my Dad a few months before he died. He’d been out for a lunchtime drink with his partner and on the walk home, someone came up behind them and snatched her handbag. Instinctively my Dad set off in chase. Tenacious to the last but at 63, his speed had gone and the robber got away. He was cowed as he told me the story. Cowed by the deepest shame. It was very sad and no words could make it right for him.

I didn’t really get it at the time but I do now. It goes beyond pride. It’s a part of our identity. Part of our self belief. It may be built on ever shifting sands but it’s part of who we are. My Dad was Tenacious to the very end – just not in a way that he recognised of himself.

And Squatty will exist, long after I can no longer touch the floor with my arse as I complete my third set of squats.