Love really hurts without You

I went ten pin bowling just before Christmas with my six-year-old grandson, Oliver. He likes bowling. I like it too although where Oliver makes huge incremental progression with every game, I clearly regress each time I play. An none-too-subtle metaphor for so much of course, but age, well that’s all in the mind…

During our game of bowling, on the next lane (ally?) we were joined by four or five people with learning disabilities, with whom I presumed were two staff members. Their game looked much more interesting than ours. They were clearly real players, hitting strikes on a regular basis and making the scoreboard play loud music, high-fiving each time and all decked out in the most fabulous Christmas clothes, jumpers, sparkly dresses, elf and reindeer ears etc. It looked like a well-anticipated day out of celebration.

Anyway, 20 mins in or so, I noticed Oliver staring at the players in the next lane. At first I thought it was because they were celebrating Christmas hard (a passion which Oliver lives for in December) but then I wasn’t so sure, it was more than that. As I remarked to his dad afterwards, maybe it was the first time that he had consciously noticed people who looked a bit different to the other adults. He wasn’t rude, or staring in a way that was hugely inappropriate, he was just looking at people with genuine intrigue, like kids do, and with certainly more glances and interest than he was paying to anyone else. Eventually Oliver got eye contact with a couple of the people playing, and they got talking a bit, asking Oliver if he had got any strikes and telling him how many they had. They’d had 8 strikes already and we had had 1 in over an hour. Oliver grinned and told them that his grandma and grandad weren’t very good at bowling and then rejoined our game. He said he had ‘made friends’. Mission accomplished on his part I think, but I was left with the feeling that they were clearly having more fun than us and that Oliver would’ve loved to have ditched us and joined them if he could. But hey, Oliver, you don’t get to choose your family for outings like this. Grandma and grandad are doing their best and you were born into a dynasty of very, very average sportspeople!

Two of the people playing bowls would intermittently stop playing bowls and would embrace and have a full-on kiss. This caused the others in their party to very loudly ‘whoop’ and clap and cheer each time this happened. The couple would finish their kiss, burst out laughing, and then clap each other before carrying on with their bowling. The man would do a little bow to the others, and the woman would run and hold hands with a female friend and they would hug, as if in celebration. At one stage the man went off and came back with two huge ice-creams, with sprinkles and chocolate sauce a plenty, and the two of them sat alone in their own world eating (and kissing) while others played on. It was really quite joyous.

As a former support worker and now as a social worker, I found myself drawn to the reaction of the support staff. And what I saw was that each time the couple kissed, the support staff joined in the cheering. On one occasion when the couple were mid-embrace a support worker called out to them, “you two look so lovely, do you want a photo?” and they duly obliged. This went on throughout the game until we left, with Oliver looking back longingly at the fun he had seen but wanted more of.

I have been thinking about this a lot over the last couple of weeks and it’s very much triggered some real memories of my early days or working with people with disabilities, and about relationships.

I first began to work with people with learning disabilities in the very late 1980s, early 1990s. At that time, I worked as part of teams aimed at supporting people to move out of long-stay hospitals, which I soon discovered was a polite way of describing asylums, where people had lived pretty much all their lives and with no prospect of ever leaving. Their move was into what we called ‘community settings’, which were small group homes for 4 or 5 people. We got so much wrong then (as we do now) but were so proud of the work we did back then. It genuinely felt like liberating people from a lifetime of shackles. There was genuine optimism in the air.

As much as I fondly remember this work, I do recall struggling with what to do about the relationships which had formed in the hospital settings, and I felt that the organisations involved in this work did also. On one hand, we acknowledged that in the hospital personal relationships, including intimate ones, had occurred, and were, we believed, healthy. However, in our discussions and plans for moves towards ‘group homes’, the notion of continued sexual relationships became a real thorny issue for us to consider. Whilst it wasn’t spoken about openly, there was an understanding between staff that whatever had gone on in the hospital (and of course, there was some really deeply worrying things) should not be replicated in the community, and the reason for this primarily was, well, because we told ourselves that “the community wouldn’t like it” – a phrase I remember hearing a lot. A belief that for people with learning disabilities to live among non-disabled people, they would need to conform with what the expectations of them would be, and that would definitely include that they did not have sexual relationships.

At that point we made no differentials between the sexual relationships of those living in the hospitals, where the relationships were loving, intimate and a very likely to be a lifeline to people experiencing the harshest of injustices, and those relationships in the hospitals that were clearly abusive. Therefore, a blanket approach to people not being ‘permitted’ to have any kind of sexual relationships once out of the hospitals appeared to be the order of the day, at least across the hospitals were I was working. An injustice utterly compounded for many people in the hospitals, who on their move to community living found that the first thing that had gone was friendships, relationships and intimacy and in effect, many had to start again to build relationships, particularly intimate ones. The criteria for who lived with who in a group home seemed to be based around who liked or could tolerate the others. The criteria for who couldn’t live with who in a group home was unspoken but always ensured that those who had sexual relationships were kept separate.

As a support worker I recall Alexander and May, who had been brought out of the local large hospital together, and who were inseparable having been admitted to the hospital as children. When years later at a Christmas event, which saw two or three group homes hold a party in one of the homes, the couple were ‘caught’ by the staff in bed during the party. The party was immediately stopped, both Alexander and May sent back to their own homes with accompanying staff, and steps were taken to ensure that the couple never saw each other again, which to my mind they didn’t. At the staff meeting a few days later the senior staff member regaled the meeting with a story about her asking May why she had got into bed with Albert at the party. May said it was because she liked it. This caused huge laughter with staff team, but not one shred of reflection, remorse or burning shame.

Edward, a man who whilst admitted under a section of the Mental Health Act fell deeply in love with a young woman who was also admitted to hospital under the Act. As Edward’s support worker I was told by the Approved Social Worker (nowadays an AMHP) that he had decided “along with Geoff, the consultant” (I remember thinking how keen he was to emphasise to me that he was on first name terms with the doctor) that Edward’s discharge would be wholly conditional on him not having a relationship with this person when he returned to the home because this person was a ‘bad influence’ and was ‘known to want to have a baby’. As staff we ensured that the Approved Social Worker’s plan was adhered to. Edward died a few years later, never having experienced a relationship outside of the long stay hospital.

And of John and Susan, who staff thought were getting too close to each other and so were made to attend different day centres, in the hope that they would make new friends and be less reliant on each other. When both a colleague and I raised this at a meeting, we were told by managers we were ‘idealistic’, by which of course they meant we were young and unknowing and silly. The relationship between John and Susan, the absolute loves of each other’s lives, ‘fizzled out’ as a couple because any support needed to facilitate that relationship simply stopped been provided. When my colleague tried to re-instigate the support to enable John and Susan to see each other again she found herself surplus to requirements at that home and was transferred 20 miles away.

But this is all years ago, right? Things have changed and maybe the kissing bowlers are the new norm? I would give anything to say yes, but in truth that isn’t my experience. As a social worker I still see and feel the attitude of late 80s and early 90s, of non-permission and segregation across learning disability services. When it isn’t barkingly obvious, I can still sense it. I still sense a fear about relationships. For many years I used to think the fear was as I was told during the work in the hospitals, because people don’t want to think of people with disabilities having sex. But now I don’t think its that. I think its more about the consequences of people who receive support having sex.

The search for the “what if’s” to prevent relationships taking place are common place and often the go to position when a new relationship starts. Outside of service land, where a new relationship starts its usually encouraged and celebrated. Throughout my life I have had numerous people people tell me with great excitement that they have a new girlfriend or boyfriend or even that they’ve had a one night stand etc! It’s an exciting part of life and/or growing up/getting older etc, it’s a life event and one that is generally celebrated. Not so much if you have support needs and have professionals in your life. It tends to be the moment that your social worker or nurse decides to don the mantle of Sherlock Holmes to check that everything is as it should be. Its where we immediately go rushing for the legislation, the assessment form, the something somewhere that means we can end this right now, or worse still, assemble the obstacle course to make the relationship journey as fraught as we possibly can.

The Mental Capacity Act may have thwarted some of us for a while with its bloody principles, but we quickly learnt to turn them on its head. Principle One not being rebutted, replaced with a concern that too many people are using principle one not to protect people –  so start rebutting people! Then we found sanctuary in ‘fluctuating capacity’, then ‘executive capacity’, and always ‘people saying what they think they want us to believe during an assessment’ (like we all do), We have even clung to a belief that despite the legislation, there is somehow a middle way, a period when legislation can be interpreted and so applied fundamentally different for people with disabilities, to prevent them experiencing life in its fullest form because that is preserved for us only. 

I remember speaking to a psychiatrist some years ago. He was well meaning, I think (possibly not), but utterly lost in what to him was a new world of ‘rights’ for people that he believed he had spent his whole career caring for. The Mental Capacity Act was, he said, the tragic death nail of paternalism. On one hand I admired his honesty, he was upfront about his self granted and self-perceived role as a public protector, based on his own measures of morality etc, but at the same time repulsed by the astonishing grandiose arrogance of him. I met with him to discuss Mary. The psychiatrist, having experienced a difficult time in the Court of Protection when his witness statement in relation to Mary was heavily criticised by the judge, stuck to his belief that although the court ruled that Mary had capacity to consent to a sexual relationship, he did not believe that Mary had what he termed ‘the same capacity as you or I’. Her capacity, he argued, must be tempered with the fact that she has a disability and that as psychiatrists, nurses and social workers – public protectors –  we all know that Mary will not understand everything always in the same was we do.  And so, Mary had, in his view, ‘a little bit of capacity’ but not the same as us and we needed to protect her as a result of that. I remember the discussion continuing and explaining that if we believe someone has the capacity to consent to sexual relationships, that means they have the same capacity as you and I and that means that they too may be exposed to the things that sexual relationships bring to us all, including fulfilment and pleasure, but also the possibility of pregnancy and STIs, and then, possibly even more so than that, it also meant that within a sexual relationship the person may experience heartbreak, distrust, lies from their sexual partners etc. And this is where he struggled. As a professional man, he could not, he said, allow a situation for Mary where others may lie to her, hurt her, and treat her badly for the purposes of having sex with her, let alone her run the risk of pregnancy. Yes, she had capacity for the act, he reluctantly conceded, but not the consequences. His othering of Mary complete.  

There was no legal basis for his argument at all, but if I am honest, I think his view about capacity and people with learning disabilities having sexual relationships would be widely shared by many, not that it would be admitted.

I think, on balance, as a profession, we remain as afraid of this now as we were when the hospitals closed, perhaps more so. Whatever the reason, whether we are frightened of the consequences of love or desire or whether its worrying about what others may feel? Or whether it’s trying to protect people from the harsh realities of adult relationships, which invariably come with more than love hearts, ice-cream and chocolate kisses? Or is it that if we ever get to a place of real reflection and honesty, whether that deep down, our concerns are none of this. Is it that our real feal when it comes to people with learning disabilities having relations is not necessarily the unwanted pregnancies, it’s the wanted ones.