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Natalie: [Introduction] Welcome to the second SafeLives Spotlights. I'm Natalie and this is the second podcast in our series on domestic abuse and disabled people.'
Today I've come to speak to Dr Michelle McCarthy, a reader in learning disabilities at the University of Kent, in Canterbury. Michelle has a background in social work and has worked with people with learning disabilities in a variety of residential and field settings. She has a particular interest in working with women with learning disabilities on issues such as relationships, and sexual health, and has recently finished a research project looking at domestic abuse and women with learning disabilities. Hello Michelle.
Michelle: Hello
Natalie: So can you tell us about your research? 
Michelle: Yes. Some colleagues and I, a couple of years ago, did a research project looking at the domestic violence experiences of women with learning disabilities. So we interviewed a group of women who had experience of domestic violence in recent years and we interviewed 15 women with learning disabilities. Now, that's a relatively small sample number but, in fact, our study was three times as big as any other study that has been done in this area because usually the research takes a very small sample. So we were asking the women what their experiences had been. All of the women in our study had left the violent relationship because we were not given ethical approval to include women who were still in the relationship. So we spoke to them about the relationships, about how those relationships had ended, what kind of help, if any, they had had to escape from those relationships. And what had been useful to them in terms of support from other people.
Natalie: So can you tell us, what did they tell you about their experiences of the abuse?
Michelle: Well, I guess what they told us was that the kinds of domestic violence that they had experienced was not fundamentally different to what any other woman would experience. There's nothing about having a learning disability which protects women from domestic violence. So the full scale of physical, sexual, emotional and psychological, financial abuse that any other woman might experience, these women had also experienced that. One of the things that emerged very strongly from our findings was the very high levels of coercive control, that the men who they were in relationships with were very controlling about where the women could go, what they could do, what they could wear, who they could see, that kind of thing. The women, some had experienced very severe physical violence including some potentially life threatening injuries. Certainly domestic violence in pregnancy was common. In fact, in our study, all of the women who had been pregnant had experienced domestic violence whilst pregnant. Sexual abuse and, as I say, other psychological and emotional abuses as well.  
Natalie: So what did they, they were all out of the relationships, how did they manage that? Were they assisted by specialist services, were they seeking advice from friends or family? How did they get out of those relationships and were there any additional barriers do you think?  
Michelle: Yeah, I think there were a variety of ways. Very few spoke about friends and family being a source of support, which is kind of interesting in itself I suppose. Some had been helped by, for example, social workers or other kinds of support workers. But many I think had just eventually just managed to do it by themselves. None of the women in our study had been to a women's refuge, for example. In fact very few of the women in the study actually knew what refuges were and that kind of level of information wasn't there for them so that clearly suggests that that's an area of work that needs to be done there in terms of making the women aware of that. I think in terms of additional barriers for women with learning disabilities, as opposed perhaps to some other women, is that they are definitely there and I think first of all realising that actually what they're experiencing is abuse and that it's not acceptable and that they shouldn't be expected to put up with that. And that in itself was quite a barrier; for them to be able to see that actually life could be better and to aspire to that. And also just to simply to know that actually that help is available, that there are people and there are services that exist to help women in that position. A lot of the women really didn't know that, and so were very much kind of left on their own to deal with it. 
Natalie: So, in terms of asking specialist domestic abuse services to look at how they enable that access to their service, is there anything, are there any practical tips you can give those specialist that would increase a victim's knowledge and awareness of what is out there for them?
Michelle: Yes. I think obviously services themselves need to be more accessible to women with a whole range of disabilities and that includes learning disabilities and I think sometimes it's easier for domestic violence agencies to think in terms of physical accessibility. You know, if somebody's in a wheelchair or somebody has a visual impairment it's perhaps more obvious what you have to do to adapt your building and your service to make it accessible to those women. I think, that for people who are not that familiar with learning disabilities, they're not sure what is it then that we should be doing. And there are a number of things that they can think of. But, obviously one of those is about accessing information. That's almost like the first step if you like because if the women don't know that support services exist, because they've not had that information, well then nothing that you subsequently do will make a difference because they've not come to you yet. So, first and foremost, I think that's an important thing to address.       
Natalie: And is there a way services could do that relatively easily?

Michelle: Yeah. It's about there are lots of examples available of making information easier to read, for example, so sometimes people use pictorial information as well and I think that's always useful to do that, but also you have to actually adapt the text as well to there's a limit of what you can get across in just in pictorial format. So there are certain principles about easy-read information which are widely available for people to look at and set up simplifying what you said, but it's also sometimes about how you lay out the information and make it easier for people to understand. That's relatively easy to do, its relatively cheap to do, if you've got an existing leaflet where you can look at it and adapt it yourself to make that more easily understandable, both to those with learning disabilities and that has knock on effects for other people as well, people for whom English is a second language, for example, might pick that leaflet up and it might be easier for them to understand this version of it. And I would say also perhaps consult with people who have learning difficulties themselves, if you want to adapt your information, have a stab at it and then ask people with learning disabilities. There are lots of there are proper consultancy services available of people with learning disabilities who will either give you advice on your material, or produce it for you, obviously for a fee because they are providing a service but those kinds of things do exist. They'll have a look at it for you, if you can't afford that, or if you know that service doesn't have those funds available you can do that on a more informal basis.

Natalie: Is there anything Michele you can tell me about the perpetrators?
Michelle: Yes. It's important to say that we didn't speak to any perpetrators ourselves for this research so the information we have about them came from the women themselves and also sometimes from the people who were supporting the women to take part in our research. But obviously there were a variety of different kinds of men, there were all men, there were no women in same sex relationships who took part in our research. Generally speaking, the men did not have learning disabilities themselves, but they often did have mental health problems and often would have drug or alcohol problems. Generally speaking they were men who didn't work, and that was significant for a number of reasons. Not because men who didn't work are any more likely to be violent than men who do work but it was significant because that meant that often there was very little money in the house which was an additional stress within the relationship and also because then that meant they spent lots of time at home and so the women never really got any respite from the abuse that was happening because they weren't getting up to work for eight hours a day they were there together for most of the time, and so that was difficult. And they were men who sometimes had housing issues or were homeless and they would move in with the woman very early into the relationship, much earlier than the woman would've wanted. And that cemented the relationship really in a way that perhaps was a too earlier stage for that. And then once he was there, it was very hard to get him out and escape from that. In general, these were generally not men with learning disabilities but men who often were troubled in other ways.
Natalie: Do you feel they targeted the victims in your study, because of their learning disabilities?
Michelle: I think it's hard to escape that conclusion, yeah. Because, I think not all of them, a couple of the women were married and it's probable that the beginning of that relationship there was an element of love and affection between the two parties, you would hope, at least. But that did not come out strongly from what the women said, that relationships that were good strong solid relationships which somehow went bad, it never really seemed to be like that. It was, not all of them, but for a number of them, a relationship of convenience I think, on the part of the perpetrators and an element of targeting, they didn't seem to like the women very much but it was someone to be with and somewhere to stay.

Natalie: What do the survivors tell you they want from services, whether that's domestic abuse services or services such as adult social care, what do they want or need?
Michelle: I think there's a number of things. I think it's helpful to perhaps think what they might need after domestic violence has already happened to them, but I also think we could take some steps backwards and think about preventative work which is really useful. What do women with learning disabilities need perhaps before they enter into adult intimate relationships? And I would say they need a good sex education and relationship education at an early stage so they can be helped to think about ‘what do healthy relationships look like', ‘what kind of expectations might you have in relationships', because sometimes people are not clear about that. I think assertiveness training and help with self-esteem, and that kind of thing, at an early stage is going to be very useful so they don't find themselves in a position that they're accepting all kinds of abuse from other people and not asserting them themselves. In terms of what might what they need, if and when it does happen, I think other women to talk to is extremely useful, so whether that's informally or a women support groups something like that but a forum in which they can share experiences and help each other and get advice from each other and understand that they are not the only person that this is happening to, that actually this is a common life experience and there are things that can be done about it, I think that would be good. Often advocacy, access to specialist advocacy services, somebody to help them think through what's going on, what steps, what their options are, and what steps they might be able to take, is very useful. I mentioned already about accessible information, that that is always there. The other thing that the women in our study spoke about, and I think it is a common issue, is that they want support to be able to keep their children because their experiences of that if domestic violence is known about, and they have children, then their fear is that their children will be removed from them because the children might be in danger and obviously if that's their fear then they won't want to report it to anyone else because they won't want that to be a consequence. Obviously they, like other women, might need emergency accommodation and refuges, actually somewhere to go. Most of the women in our study hadn't been to refuges but what they wanted was help to stay safely in their own home, and not to have to leave their home, which is perfectly understandable. But that often wasn't available, that their route out of the violent relationship meant they had to leave their own home and that sometimes it took women quite a long time to come to that acceptance. That would be true, I guess, of a majority of people knowing you would want to do that but I think particularly for women with learning disabilities who might have had to struggle really hard to live independently and to have a place of their own, to have achieved that, and then to have someone move in with you who is violent, then the only solution to that is for you to have to leave what is actually your flat, or your house, and he gets to stay – that's outrageously unfair apart from anything else, and often the women didn't want to do that and I can totally understand that, but then that trapped them in that violent relationship sometimes for a long time.

Natalie: You mentioned earlier about victims not always identifying themselves as victims of abuse, and not knowing about services and also not necessarily being supported by friends and family, is that because they had been in abusive relationships previously, had they been victims of child abuse for example, within their own families?
Michelle: It's not as a result of that but that was in their experience.
Natalie: So, multiple victimisation I suppose.
Michelle: I mean certainly for some of them, that was the case, and some of them had, when they were children, had seen domestic violence in their own families, so they had seen their own mothers experience domestic violence and to some extent had grown up with that, and one or two had had previous relationships which had been abusive as well, and not everyone by any means. For some people that was in their history. The fact that they didn't have family and friends necessarily as a source of support around them, I think there are a couple of reasons for that. One is that quite often people with learning disabilities are quite socially isolated anyway, so that's one reason, but certainly it was a very strong feature of the findings of our research that the perpetrators systematically isolated the women, that they went out of their way to make sure that the women actually lost contact with family and friends, and they did that through a whole number of different ways. From being horrible to people, from being abusive to people around them, from accusing them of various things until people just stopped visiting and stopped staying in contact, and they would prevent the woman from going out and seeing family and friends as such that she became very isolated and really there weren't many people she could turn to.
Natalie: And very dependent, I suppose, on that source of seeming support from a perpetrator, and company and friendship – seeming friendship.
Michelle: Yes, to some extent, sure. 
Natalie: Finally, if you could give any advice to services about their response to victims of domestic abuse who have learning disabilities, is there anything you could add that would help them help those victims?
Michelle: Yes, I think there are a couple of things to think about. One is that women with learning disabilities need to be seen as women, first and foremost, and often you get this thing that's referred to as ‘diagnostic overshadowing' which is where the disability is seen as the most important thing about that person, that's the characteristic that people see first and that people respond to first, and not their gender and I think that's really unhelpful and obviously both things are important. But what we want really is from almost like two different worlds of services, there's the domestic violence world, if you like, and then there's the learning disability service world, and both of those have their own strengths. Domestic violence services are very good at obviously understanding domestic violence and gender issues, but don't tend to know very much about learning disability issues. And learning disability services are obviously are good at the learning disability stuff, but they need to learn much more about gender and about the realities of life for some women with learning disabilities and kinds of experiences they might have, and understanding the dynamics of domestic violence. So both services need to learn from each other ideally, and ideally work together, that would be great. In particularly in learning disability services, I think people need to just think about domestic violence differently and conceptualise it differently, because certainly what came up quite strongly from our research was that when women made people aware that's what they were experiencing, it was treated very much as an individual problem for that individual woman and it wasn't seen as a wide-spread social problem which it is, and always has been historically and is cross-culturally. Nobody seemed to be thinking in those terms. It was like that particular person is experiencing that, let's do that, and lets respond to that issue, and I think that often that meant the women were given responses that were either very simplistic or really not helpful at all. A couple examples of that where a woman had left her boyfriend, who had been violent, and he was continually sending her text messages all the time, abusive messages, and she reported that to the police who just told her to get a new phone and a new number. That's ok – but that's surely not the only answer, there's more really that could've been done with that, with just that individual response. Another woman said she had made her care manager aware of what was happening in the relationship, and the response was: ‘well, it's your choice to be in that relationship, if you don't like it, you could leave' – not in a nasty way, but in a way where everything is put back onto the individual woman. It's you now that has to find the solution to this; I just think that's very unhelpful. The other thing that for me emerged quite strongly from this research is that in terms of how we think about domestic violence for women with learning disabilities, is that we don't seem to be making links with other similar crimes that happen against people with learning disabilities. I'm thinking of disability hate crime in particular, the phenomenon of what is called ‘mate crime' which is where someone will befriend a person with learning disabilities and might gradually move into their house and take over, that kind of thing. That was a very strong pattern in our research, often they were women with mild learning disabilities, living independently, who would meet somebody, who would meet a man, and very quickly he would have moved in to her flat. And the women felt kind of railroaded into that in a number of ways either because they were just, as they themselves said, ‘I was a bit too nice', ‘I was easily led', ‘I was manipulated into it', but very quickly he would have his foot in the door, his feet under the table, and he would be ruling the roost and he would've taken over. And that has very very strong parallels with ‘mate crime', and how that works and yet we don't see them as part of the same phenomenon, they are seen as separate somehow, and they are treated differently and understood differently and I just don't think that's helpful, I think we should be taking a broader look at what's happening to these people rather than just seeing it in a very blinkered way of what's happened to individual people as opposed to what happening a bit more broadly.

Natalie: Thank you Michelle for taking the time to talk to us, is there anything else you would like say?
Michelle: Yes there probably is one other thing I would want to say in terms of particularly back to the issue of prevention I said, because I think what can support workers do for women with learning disabilities? I suppose one thing that needs to happen is that women with learning disabilities just need – I know sounds very idealistic – they just need better lives, they just need jobs, they need nicer places to live, they need social activities, they need to be connected in society in many more ways because what happens for many people is the only thing of value in their lives is their relationship, because they don't have many of the things that many of the rest of us take for granted, and if that's the only thing that is valuable in your life well you're probably not going to want to let it go even if it is really rubbish, and abusive, because then you're really left with nothing because you've got no job, and maybe your children have already been taken into care, and you've got no money, and you live in a horrible place and really that relationship is the only thing of value that gives you status in society as an adult woman, that you're in a relationship with someone, and if that goes, blimey there's not much left so obviously it's a very very big thing to think about to improving women's lives in lots of other ways that are not anything to do with the relationship I think is in itself a really important thing that needs to happen because then women can get that kind of value and that self-esteem can come from lots of other things and not just from that relationship. I realise as I say that, services are being cut left, right and centre and actually the kinds of opportunities that are available to vulnerable people are actually reducing, not increasing, and that is pretty sad.
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Natalie: A huge thanks to Michelle McCarthy for sharing her insights with us. For more on disabled people and domestic abuse look at our website www.safelives.org.uk