fpa (the Family Planning Association) has made the sexual rights and health of people with learning disabilities their campaign for this year's Sexual Health Week, which runs from 4-10 August. Campaign materials include these posters.

There's a strong focus on the negative impact of people with learning disabilities not being seen as sexual being on their rights to sex and relationships and sexual health, and are keen to stress the key role of social care professionals in tackling this.

What do people think?

This is an issue that most people working with individuals with intellectual/learning disabilities struggle with. On one hand you have the human rights aspect and on the other the eternal child who is vulnerable and an ideal target for abuse. Someone needs to address the issues. Its the 21st century and yet we are not that much further forward from the eugenics movement, The balance between care and control is very important. Personally I liked the posters .

fpa have just released the results of their survey of professionals, which show 94% believe barriers exist which prevent people with learning disabilities from enjoying sex and relationships.

Can anyone comment on what these barriers might be?

Hi Mithran

It looks like the FPA are trying to improve the lives of people with Learning Disabilities and this includes increasing people's perception that this group of people actually has a right to a sexual life like the rest of us.

The hope is that professionals like yourself and Learning Disability Nurses like myself educate and encourage clients to know what a relationship is and the difference between this and abuse.

 I haven't decided if I like the posters yet 

Hi

I work at an organisation as a welfare officer for people with learning disabilities. Many of my clients have mild learning disabilites and live a fully independant life living alone and having relationships.

Two of my clients came to see me with regards to information on contraceptive advice. As this is not my speciality i decided to support them and refer them to our local Family planning centre. I was bombarded with no end of barriers.

I explained who i was and who i wanted to support and how. I was on the phone for 30 mins been passed from pillar to post explaining what i hoped to achieve to several different professionals ranging from the receptionist to a FP nurse and in the end a doctor. No one would see my clients as they had learning difficulties.

They believed they did not have the capacity to make the decision over what contraceptive method they could use.

I was disgusted to say the least they would not even make an appointment for my clients to make an informed choice or for the professionals to meet the clients in the first place.

My case was referred to the learning disability nurse whom would contact me to make a decision whether they would see my clients.

I am still waiting 5 weeks on. I have made numerous telephone calls and with no prevale got through to anyone. I am in the process of making a formal complaint regarding this particular Family Plannng Centre.

 Annie, your story describes me as completely extraordinary. If the family planning centre specificially refused to offer advice to the people you were supporting on the grounds of their learning disability, that would be a very clear breach of the DDA, and I am sure, other legislation relating to equalities and  human rights. It's completely extraordinary. In my experiences (other that for age and gender specific services) sexual health services are able as "open-access" as any health service can be - there are obligated to see anyone who walks through the door.

 This is not my specialist area but might I suggest that you contact both MENCAP and http://www.equalityhumanrights.com/en/Pages/default.aspx.

 In the event that the people you have been supporting did not wish to make a formal representation to these bodies, I would hope that expect that either organisation would be willing to contact the Clinic on a "mystery shopping" type expedition or similar.

 It would be interesting if you could state the reasons for the refusal. 

 Good luck with persuing this for you all and let us know how it goes.

Daniel, asking "Can anyone comment on what these barriers might be?" is a bit like asking "can anyone comment on what human rights abuses take place in the world" or "can anyone give me a few specific reasons for the differences in outlook between China and the USA". For such a huge question I'd suggest equally huge answers:

Devaluation

Disempowerment 

Exclusion

I think all count as barriers....

...and I'm meaning to imply not just that these are the issues that people face without our support, but that we need to recognise that our support often adds to these issues too.

Annie, if I might be so bold as to offer you a challenging question: How did the FPA ever encounter the fact that this couple are "people with learning disabilities" before they'd even got in the door? If we label people (with all that this implies) when we speak to people we can't criticise them for doing the same. I do recognise that I don't have a full story here so please forgive me if I'm missing something - and please don't think that in any way I'm singling you out for criticism - 99% of people in your situation would phone up and say "I'm... etc etc ...learning disability... etc etc ...and I have two clients who ...etc etc " 

RobertW:

Daniel, asking "Can anyone comment on what these barriers might be?" is a bit like asking "can anyone comment on what human rights abuses take place in the world" or "can anyone give me a few specific reasons for the differences in outlook between China and the USA".

RobertW, thanks for responding my attempt at furthering the discussion, which is great; however I guess my response to your comment would be, fair enough, but don't feel you have to name them all.

I guess the major one linked with your suggestion about exclusion, and this seems to crop up a lot, is the stigma attached to learning disability, and the disastrous lack of understanding in general society. How many of us live close to, work with, or are friends with people with learning disabilities? If the answer is as I suspect - not many - isn't this part of the problem? Until the process of that horrible word, integration, into the community is successfully achieved, and those gulfs of understanding eradicated, I imagine that people with learning disabilities will continue to be excluded from enjoying the everyday things that people without learning disabilities take for granted.

Ummm... yes, sorry - I suppose that some examples would be helpful and would move the discussion on - but I find it hard to think of examples without getting stuck in thinking about the whole of the environment in which people live. I'm not meaning to come across negatively. For many of the people that I've known it's not really possible to say what the barriers are in any more detail - the answers I've given are about as specific as I can think of getting. To show you what I mean here's a story:

I can think of a particular man, call him Andy. He lives in a group-home type place. The only people who could be described as friends are a couple of those who live in the same home. Friends is a bit too strong a word though - they just happen to have been placed in the same home and co-operate with one another in the way that I did with flat-mates when a student (people who I didn't bother to keep in contact with when I left). One of his acquaintances at the home is a woman, Jean, and they flirt a bit, but in a child-like manner. Andy meets other people at a resource centre where he helps in a catering unit. Both at the home, and at the catering unit there are people who support him - call them 'staff' for convenience. Pretty much anything that Andy does is under their scruitiny - day in day out, hour by hour, minute by minute. These staff talk about 'empowerment' but act in many ways as if they are his parents (I've played that role by the way so I'm not criticising individual people here - I've talked the talk while stuck in a system which expected me to be in charge of what went on in the room). In response much of Andy's behaviour is child-like (it's not that way because of his disability). The staff certainly feel quite happy commenting on his relationship with Jean. When he's said to them "Jean and I are going to get married" (which he says regularly) they've laughed and said "Are you now! And when will that be?" Never in his adult life has there been an opportunity for Andy to have had a 'date' (i.e. two people meeting in privacy, with the possibility of 'a relationship' pretty clearly in the air between them) with Jean or anyone else. He's used to doing what he's told on a day to day basis - although sometimes he does refuse to do things there's usually a process to go through where he's eventually persuaded to do them by the staff. He's not brave enough to invite Jean into his room. He did do that once, and they started to kiss, but a member of staff knocked on the door to ask about whether he was going to wash-up. They do sometimes kiss in a flirty way, but generally they seem to do this in public rather than private. They like the reaction they get from other residents - "Ohhh... look at Jean and Andy everyone!!!". Andy's entire set of social contacts - those in the home and at the resource centre - number about 40. That's only 40 people he has to choose from in the whole world if he's going to have a 'relationship'. 21 of these are male - and he's not interested. 17 of the women are significantly older than him, communicate in very different ways, just don't like him, or just aren't people he'd be interested in. One of the remainder is Jean. The other is a woman he likes a bit at the resource centre, but they have nothing in common he's never had an opportunity to approach her without being watched, and anyway she's known to be 'Steven's girlfriend'. 

I know I'm simplifying the story here and it might even sound like I'm being unnecessarily negative. And I know that there are organisations that try to work in different ways - and some people who do wonderfully different things from this. But on the whole I see fairly similar problems arise in many many services. And when I think of this kind of situation I tend to think that everything about the lives of Andy and Jean is a barrier. There's pretty much nothing which isn't a barrier. So my answer is in all seriousness - exclusion, devaluation, disempowerment. And to be specific, these things as carried over from the way that society sees them to the way that they receive services - the way that the services they receive shape their entire lives.

RobertW, that's a really interesting picture of a frontline example, although obviously quite a bleak picture overall. A shame the member of staff couldn't have respected Andy's privacy at what could have been a crucial moment...and I take the point about the lack of potential partners. That really highlights the social exclusion and isolation that people with learning disabilities are faced with.

Yes... sorry to be bleak... I don't know if that's always something helpful...

To be more positive - I'm sure there are amazing stories of positive things out there. And it might be good to hear some. But - we MUST remember two things about these (I think):

Firstly - that each positve story is just one story... a valuable story, reason to be hopeful, something to learn from, something to tell people to show that 'different' is possible, but certainly not proof that 'things aren't like they used to be'.

Secondly - that in most cases someone has gone out on a limb somewhere to make sure that each positive story could happen. We need to notice this and applaud the person/people who did.

People will have seen in my other posts that I'm particularly interested in this aspect of how things work... that the really interesting stuff for people often depends on someone taking a real personal interest and making sure that 'simply not possible' things actually happen. The reason I'm so keen on saying this is because it doesn't get talked about enough, and because it suggests to me that good strategies for changing things often depend on us creating an environment where all sorts of staff people  (managers included) are more able to do this - more able to 'go out on a limb'. Of course allowing people to do this is a bit scary... What if something bad happens? But I think it's worth saying that bad stuff already happens (look at the story I told) - and that one of the biggest effects of trying to control things too tightly is that the 'going out on a limb' simply gets forced down the system to the most front line of the front line staff. Which is all nice and safe for the rest of us of course. We get to be clear about policy and practice, and on the front line people have to make it up as they go along. In fact they sometimes have to step out of line just to keep people safe. And then when something goes wrong it's just a care assistant who gets in trouble and that's pretty easy to deal with.... 

Oh dear... I was trying to be positive...

OK let's try again: Positive things are possible. There are tools to make them possible. Real person-centred planning for instance, gives us ways to really genuinely get people a life. One of the benefits of getting a life is that all sorts of things, including loving and sexual relationships, become much more possible.