Working with women with learning disabilities who have experienced gender-based violence

Gillian MacIntyre and Ailsa Stewart (University of Strathclyde)

August 2022

Acknowledgements

This Insight was reviewed by Prof. John Devaney, Scottish Government policy colleagues, and subject specialists including Social Work Team Leaders. Iriss would like to thank the reviewers for taking the time to reflect and provide comments on this publication.

Key points

- The evidence base is limited due to inconsistencies around definitions, as well as a lack of research involving women with learning disabilities.

- Very few studies in Scotland on gender-based violence (GBV) have looked in-depth at the experiences of women with learning disabilities.

- Evidence suggests that women with learning disabilities are disproportionately likely to experience GBV, but are often a hidden population.

- Abuse experienced by women with learning disabilities is often pervasive, leading to a normalisation of abuse. This makes it difficult for women to identify abusive behaviours and is a significant barrier to accessing services. Support that includes educational components is vital for women to understand and identify abuse.

- Trusting relationships and longevity of engagement are critical to enabling women to access appropriate support and to ensure that women feel believed and reassured that they are not to blame for the abuse.

- Other preventative strategies, such as building social networks, developing peer support and challenging other areas of disadvantage in women’s lives, are also important.

Introduction

There is increasing awareness that women with learning disabilities are disproportionately likely to experience gender-based violence (GBV) (McCarthy, 2018), and there is an increasing demand for services to support this group of women. It is, however, difficult to establish exactly how many women with learning disabilities have experienced GBV, partly due to inconsistency around terminology and definitions. There is no universally agreed definition of ‘learning disability’ (or even ‘disability’) in the literature, and the terms ‘gender-based violence’, ‘intimate partner violence’, ‘domestic violence’ and ‘domestic abuse’ are often used interchangeably. Therefore, there is little agreement on how the concept is measured and understood (Mikton and Shakespeare, 2014). For the purposes of this Insight, we use the terms ‘learning disability’ as defined in the Keys to Life policy and ‘gender-based violence’ as defined in the Equally Safe strategy.

Specific studies cited here may use alternative terms such as ‘domestic abuse’ or ‘intimate partner violence’. Unless otherwise stated the evidence base refers to violence against women by men. There is little research that has been carried out on violence against women with learning disabilities by other women. The impact of GBV on the family is acknowledged throughout. Specific studies looking at the impact of GBV on the children of women with learning disabilities are not included unless otherwise specified. For a more detailed analysis of this issue see McCarthy (2019) and Collings and colleagues (2020).

The relationship between disability and abuse is relatively well established. The European Union Agency for Fundamental Rights (2014) suggests that 50% of disabled women have experienced GBV at some point in their life. The experience of adults with learning disabilities who have previously or are currently experiencing GBV is less well documented. Bowen and Swift (2019), in a systematic review of research on intimate partner violence and people with learning disabilities, found only six relevant articles. Most studies focused on physical disabilities or sensory impairment rather than learning disabilities. Meer and Combrink (2015) also noted the challenges of hearing directly from women with learning disabilities about their experiences of GBV. They cite concerns around secondary victimisation – making the women relive their experiences and challenges related to ensuring informed consent. As a result, some studies focused on the experiences of carers and professionals as secondary sources, diminishing the voices of women with learning disabilities experiencing GBV.

The available evidence suggests that some women with learning disabilities have experienced severe and enduring GBV and abuse, often from multiple partners, and that this abuse is often normalised (McCarthy and colleagues, 2015; MacIntyre and Stewart, 2020). They often have limited knowledge of services and sources of support available to them and this is compounded by a lack of awareness of the needs of women with learning disabilities who experience GBV by some professionals and agencies (McCarthy and colleagues, 2015; MacIntyre and Stewart, 2019, 2020). While many women with learning disabilities are also parents (Stewart and McIntyre, 2017), it is not the focus of this summary.

Policy context

In Scotland, the key strategy to prevent violence against women and girls is Equally Safe (Scottish Government, 2016). It sets out a vision where violence against women and girls is eradicated and provides a framework to deliver this. There is little mention of disability, other than an acknowledgement that disabled women are more likely to be vulnerable to exploitation and coercion. It is unclear whether any funding associated with the strategy was targeted specifically at the needs of women with learning disabilities. Likewise, Keys to Life (Scottish Government, 2013), the national learning disability strategy and more recently, its implementation plan (2019-2021), does not consider GBV in depth, suggesting that women with learning disabilities who experience GBV may fall between two distinct policy domains.

The Adult Support and Protection (Scotland) Act (2007) (ASPA) provides the legislative framework for safeguarding adults. Evidence suggests that this mechanism has not been routinely used for the support and protection of women with learning disabilities who experienced GBV (MacIntyre and Stewart, 2020). It has also been argued that the use of the ASPA and other legislative mechanisms can disempower women with learning disabilities by reducing their rights and choice, and increase feelings of powerlessness (Public Health Scotland, 2020; People First, 2017). The relationship between the ASPA and the Multi-Agency Risk Assessment Conference (MARAC) system is complex and more work is needed to understand how these different protection mechanisms can be employed to support women with learning disabilities experiencing GBV in an empowering way (SCLD, 2019).

A report by Engender Scotland published in 2018 found that 73% of disabled women who participated in a small-scale study had experienced domestic abuse, and 43% had been sexually assaulted. The study does not specify how many of the women who participated had learning disabilities, but they were included in the sample. The authors suggested that the higher prevalence rates of abuse of women were the result of pervasive discrimination, negative attitudes, lack of knowledge and poor access to services. They called for the experiences of disabled women and girls to be explicitly recognised in the Equally Safe Action Plan and recommended further training for staff alongside an increase in specialist support for women with disabilities.

Public Health Scotland (PHS) has created guidance for practitioners working with adults with mild or moderate learning disabilities that have experienced or are at risk of experiencing GBV (Public Health Scotland, 2020). It highlights the role that practitioners must play in identifying and responding to GBV and in the provision of support. Prevention is also an important aspect of the guidance and highlights the importance of relationship-based practice.

Safe and Together is an internationally recognised model of good practice that provides a suite of tools and interventions to work with children where there has been gender-based violence in the family (Bocioaga, 2019). The model has three key principles: keeping children with the survivor parent/ guardian; partnering with the surviving parent as a default position, and intervening with the abuse perpetrator to reduce risk and harm to children. While there is a growing evidence base on the effectiveness of the Safe and Together model (Bocioaga, 2019), none of the studies reported consider parental learning disability. Given that mothers with learning disabilities in GBV situations may face the removal of their children due to a perceived failure to keep them safe (McCarthy, 2019; MacIntyre and Stewart, 2020, 2021), the model may need to be adapted to meet the needs of this group of survivors.

Prevalence of abuse

The best available evidence suggests that women with all types of disabilities are at greater risk of GBV and are 1.5 times more likely to be victims of violence (Hughes and colleagues, 2011). Hughes and colleagues also found that interpersonal violence occurs at elevated and disproportionate rates among women and men with disabilities, especially when assessed over the course of their lives. Similarly, in a review of 29 articles focused on sexual abuse and learning disabilities, Byrne (2017), confirmed that adults and children with learning disabilities are at a higher risk of sexual abuse than the mainstream population. This is supported by evidence from other studies. For example:

- Emerson and Roulston (2014), in a quantitative study in the UK, that drew on data from the Life Opportunities Survey of 37,513 British adults, found that disabled adults were much more likely to have been exposed to violent crime over the last 12 months than their non-disabled peers. This was particularly elevated for those with mental health problems or learning disabilities.

- In a sample of 350 men and women with learning disabilities in the United States, high levels of abuse were reported, with more women than men reporting sexual abuse from their intimate partner (Platt and colleagues, 2017).

- A meta-analysis of studies in English and French carried out by Mailhot Amborski and colleagues (2021) found that women with disabilities were more likely to be victims of sexual assault. They found those with sensory impairments to be most at risk. Although women with learning disabilities were included in the study, no specific mention was made of the relationship between learning disability and victimisation.

- Codina and colleagues (2020, 2021) found that in a sample of 260 adults with a diagnosed learning disability in Spain, 35% had been sexually assaulted. They found that being a woman who had been assessed as legally incapable, with a co-morbid mental health diagnosis, were the most relevant characteristics of victims.

- Codina and colleagues (2020), in the same study, also found evidence of poly-victimisation where people with learning disabilities were abused on multiple occasions, in different ways, and often over many years. The average was at least 13 times, highlighting the pervasiveness of victimisation for people with learning disabilities.

- Majeed-Ariss and colleagues (2020) in an analysis of referrals to a sexual assault referral centre in England, found a significant over-representation of women with learning disabilities. They found that women with learning disabilities required accessible preventative services to reduce the opportunities for harm and abuse. Those with a learning disability who presented having experienced sexual assault were also more likely to have a co-morbid mental health and/or substance misuse problem.

Risk factors: what makes women with learning disabilities more likely to be victims of abuse?

There are a number of reasons why women with learning disabilities are more likely to experience GBV than their non-learning disabled and non-disabled peers. In particular:

Stigma and discrimination

Both professional and societal disablist or discriminatory attitudes towards women with disabilities can lead perpetrators to believe they are easier to manipulate. A South African study with 58 service providers suggests that women with learning disabilities are viewed as less valuable (Meer and Combrinck, 2015). This is heightened by cultural beliefs about disability, fear and shame associated with persons with learning disabilities and the tendency of people to internalise negative views about themselves. Therefore, a lack of professional recognition about abuse and a lack of appropriate responses to this, alongside perpetrators seeking out vulnerable women, combine to increase the likelihood of abuse for women with learning disabilities.

Exposure to perpetrators

Disabled women are more likely to be exposed to a wider range of potential perpetrators, including care workers and personal assistants, with whom they often have a dependent relationship (Breckenridge, 2017). Cavalier (2019) suggests that women with learning disabilities are specifically targeted because of their learning disability and then exploited in the guise of an intimate relationship or friendship.

Other risk factors

Evidence suggests that other risk factors include loneliness and isolation and difficulties in identifying and naming abuse (Plummer and Findlay, 2012). As will be discussed below, women with learning disabilities can be unaware that their relationship is an abusive one. The association with poverty is also strong, but it is not clear whether it is disability or poverty that plays the major causal role in the increased violence experienced by people with disabilities (Mikton and Shakespeare, 2014; Emerson and Roulston, 2014).

Who are the women and who are the perpetrators of abuse?

Our research, in partnership with Central Advocacy Partners in Falkirk (MacIntyre and Stewart, 2019, 2020, 2021) found that women with learning disabilities who had experienced GBV often share a number of characteristics:

- Many were parents whose children where not in their care

- Abuse affected the women across the life cycle

- A dual diagnosis of learning disability and mental health problems was common, and linked to previous trauma

- Anxiety and depression were reported with incidences of self-harm and suicidal ideation

- Autism spectrum disorder was reported in several cases

- Loneliness and isolation featured significantly

- Knowledge of available services and how to access them was limited

- Moving to a new geographical area to flee abuse often meant limited social networks and other sources of support, increasing the likelihood of abuse in some cases

- Identifying abusive behaviour was challenging

- The majority of women experienced poverty and lived in areas of social disadvantage

There are a range of perpetrators of violence against women with disabilities. These can include friends, family members and personal assistance providers (Hassouneh-Phillips, 2002), and the deliberate targeting of vulnerable women by predatory and violent perpetrators. McCarthy (2018) states that often those who perpetrate abuse against women with learning disabilities do not themselves have learning disabilities and are generally more intellectually able. Where the male partner of mothers with learning disabilities have higher IQs, this is an increased risk factor for harm to children. Brownridge (2006) found that men were 2.5 times more likely to behave in a dominating and patriarchal manner, and 1.5 times more likely to engage in a sexually proprietary way towards women with disabilities. This suggests that when considering risk, practitioners need to take the motivations of male perpetrators into account.

Types of abuse and their impact

Women with learning disabilities' experiences of GBV are multi-faceted. Therefore, the concept of intersectionality can help understand the impact of multiple layers of disadvantage on their experiences (Thiara and colleagues, 2010). Mays (2006) argues that sexism, ableism and poverty impact and exacerbate the nature and consequences of violence against women with disabilities.

MacIntyre and Stewart (2019, 2020) found that the types of abuse experienced by women varied but included sexual violence, physical violence and coercive control (such as taking control of mobile phones and money). The violence was usually perpetrated by a husband or partner and was often ongoing. Several women had also experienced abuse by family members during childhood or early adulthood. Abuse and, in particular, violence and sexual violence had, therefore, been part of their lives for many years and become normalised. This is supported by Weiss and colleagues (2011) who found that women with learning disabilities who had experienced maltreatment or abuse in childhood were more likely to experience GBV as an adult. As noted, all of the evidence available reports on gender-based violence against females by males. There is very limited evidence available on abuse within same-sex relationships for people with learning disabilities, perhaps because of the ways in which learning disabilities have previously been conceptualised, and the relative invisibility of this group among service providers.

Evidence suggests that violence and abuse are associated with poorer physical and mental health status and can also lead to premature death (Walter-Brice and colleagues, 2012). This is partly due to coping behaviours such as smoking, excessive drinking, drug-taking or over-eating. Little research on whether consequences for disabled people are similar or more severe has been undertaken (Mikton and Shakespeare, 2014), although Sequeira and Hollins (2003) suggest that following sexual abuse, people with learning disabilities may experience a range of psychological issues similar to the general population; the evidence is inconsistent. These issues are further complicated by health outcomes being poorer in general for disabled people (Ee and colleagues, 2021) than their non-disabled peers. This is related to a range of individual and structural issues, including stigmatising attitudes by some professionals (Pellebor-Gunnink and colleagues, 2017).

It is important for practitioners to consider post-relationship trauma. Evidence suggests that despite having left their partners behind, fear often remained for women, affecting their ability to live their everyday lives, their relationships and life skills (Walter-Brice and colleagues, 2017). For example, McCarthy (2018) notes that the partners of the women in her study had often undermined their authority in their role as mothers, insisting their needs be put before the child. They did not engage in any childcare themselves and sometimes prevented anyone else from helping the mother.

The normalisation of abuse

Women with learning disabilities who experience GBV often experienced abuse and violence pervasively and that this can impact their ability to both recognise abuse and protect themselves. This prolonged exposure can ‘normalise’ abuse (McCarthy, 2018). Pestka and Wendt (2014) reported that the women’s search for belonging in adulthood following their childhood rejection led to their increased vulnerability to exploitation and abuse in relationships characterised by domestic violence.

Brown (2003) also noted that services need to be mindful of the consequences of abuse experienced in childhood. This includes consideration of suggestibility and the effects of gendered power on the ability of women with learning disabilities to make sound decisions in their relationships and sexual lives. Wiseman and Watson (2021) take this further in their exploration of the pervasiveness of violence against people with learning disabilities. They claim that where people feel devalued, disrespected and abused that their health and wellbeing are significantly affected. They suggest reframing the conversation about violence and learning disability – to consider it an issue of holistic concern focused on health and wellbeing within a social justice framework. This might involve promoting a sense of inclusion and belonging in local communities, making violence visible, and challenging the view that this might be considered ‘normal’ in the lives of people with learning disabilities.

Identification of abuse

In common with many of the above studies, MacIntyre and Stewart, (2019, 2020) found that the majority of the women in their study had only ever known abusive relationships, both intimate and familial, and so had little experience of positive relationships on which to base their decision-making. They also found direct evidence of women normalising the abuse they had experienced ‘I mean, I know everyone gets abused’ (MacIntyre and Stewart, 2019). As a result, women found it difficult to identify the signs of abuse and had limited awareness that they had been experiencing abuse. Often, it was only after receiving support that women were better able to understand what constitutes an abusive relationship and were better able to make informed choices.

Support for women

The evidence presented so far suggests that women with learning disabilities who experience GBV are a hidden group who have often been subject to many years of disadvantage, exploitation, and abuse. Providing appropriate support for this group of women is, therefore, vital and a number of important factors should be considered as outlined below.

Accessibility of mainstream services

There is some evidence that mainstream support services for women experiencing gender-based violence are often inaccessible for women with learning disabilities. Bowen and Swift (2019), in their systematic review of prevalence and experiences of abuse among those with learning disabilities, report that training clinical staff to detect partner violence is crucial to ensuring appropriate access to services. Fraser-Barbour (2018) and Public Health Scotland (2020) suggest that effectively supporting women with learning disabilities involves establishing trusting relationships. This takes time, which is often unavailable to staff in mainstream services. This is exacerbated by the likelihood that many women will require long-term support, which can often be challenging as a consequence of traditional funding models (Caton and colleagues, 2021). Awareness-raising for professionals and women with learning disabilities is required to ensure appropriate service access for adults and the provision of relevant skills for professionals (Fraser-Barbour, 2018). The key message here is that staff require support and training to effectively support women with learning disabilities who experience GBV, not that there is an unwillingness to do so.

Barriers to seeking help

The evidence suggests that women face a number of barriers to help-seeking. These include…

Lack of awareness among professionals

Professionals can, at times, overlook the possibility of GBV for women with learning disabilities. This coupled with isolation means that signs can sometimes be missed (Lightfoot and Williams, 2009). This is supported by a recent PhD thesis by Robb (2021) who found that social workers tended to understand violence against women with learning disabilities within a context of individual vulnerabilities that paid limited attention to structural causes of oppression. She recommended that social workers be given specialist training to help them manage this complex area of practice. This study also noted that the social workers themselves were concerned that they were insufficiently prepared to work with women with learning disabilities.

Unrealistic expectations of professionals

McCarthy (2018) reports that there is an unreasonable expectation among professionals that women with learning disabilities should be able to protect themselves and their children from harm. There is also some evidence to suggest that some service providers fail to take seriously the testimonies of women with learning disabilities who experience domestic violence. This reinforces women’s feelings of limited power and control over their situation and engenders feelings of injustice and frustration that could delay help-seeking and further trap them in violent and abusive relationships (Nixon, 2009). McCarthy and colleagues (2018) suggest that at times, professional responses to the experience of women with learning disabilities experiencing GBV, leave them without appropriate support and protection. MacIntyre and Stewart (2021) found that women with learning disabilities expressed frustration that professionals did not take the time to listen to them or to try to understand their methods of communication.

Lack of awareness of available support

Access to existing services can be hampered by limited knowledge and understanding of what type of support might be suitable and available. MacIntyre and Stewart (2019) found that women with learning disabilities had limited awareness of existing support services in their local communities and how to access them. This was heightened by a mistrust of some professionals based on previous negative experiences as well as a fear of not being believed.

Implications for the social services workforce

Support for women with learning disabilities can be provided by mainstream or specialist services. McCarthy (2019) identifies the key components that need to be in place to effectively support women with learning disabilities who have experienced GBV. These include:

Ease of access to support is critical, including easy-dial options for online and telephone support, given some of the digital and literacy challenges experienced by people with learning disabilities (McCartney and colleagues, 2019).

Staff training in GBV services and learning disability services is essential to ensure they are aware of the impact of GBV on women with learning disabilities. Specialist issues for consideration when working with those with learning disabilities around communication and building trusting relationships as well as recognising complex needs is also vital (Public Health Scotland, 2020; MacIntyre and Stewart, 2020).

Preventative work and education. Cavalier and colleagues (2019) report on a pilot study of the Freedom Programme, a training initiative aimed at supporting women with learning disabilities who had experienced GBV. Adaptations focused on distilling key messages into a repeatable accessible format, changing the visual layout and adding additional larger and extra visual resources. Participants were better able to understand what domestic abuse looked like, and were better able to identify inappropriate behaviour and the warning signs of an unhealthy relationship.

They became more aware of where to go for support and how to keep themselves safe. These findings were replicated in a similar study by Caton and colleagues (2021). Retaining the key messages and learning from training programmes was often challenging for women with ongoing support and reinforcement of messages vital. It is acknowledged that early intervention in the form of educational programs for young people with learning disabilities on forming healthy relationships is required (Schmidt and colleagues, 2020).

Accessible information provided in a variety of formats is important to ensure that women with learning disabilities experiencing GBV are able to access services to protect themselves and their families (McCarthy, 2018; McCarthy, 2019). McCarthy (2019) recommends that accessible information that pertains to abuse should emphasise the following key messages:

- That the women are not responsible for the abuse

- That what happened to them is experienced by others too

- That they can take action to stop the abuse themselves or remove themselves from risk

- An explanation of what kind of help and support is available and how to access it

Peer support. Women’s support groups for those with learning disabilities are also potentially valuable as a safe and confidential space for women with learning disabilities that can provide the opportunity for women to share their experiences and promote a greater understanding of abuse. Walter-Brice and colleagues (2012) noted that attending groups with other women with learning disabilities reduced psychological and physical isolation and encouraged friendships. Collings and colleagues (2019) found that peer support from women who shared similar experiences played a key role in coping with challenges and adversity.

Specialist support. MacIntyre and Stewart (2019, 2020, 2021) suggest that specialist staff with knowledge of learning disabilities and GBV can help women achieve positive outcomes in their lives. In particular, by increasing knowledge of and ability to deal with abusive behaviours and to keep themselves safe. They identified a number of key roles played by support staff working with women with learning disabilities who have experienced GBV. These include:

- Education – to support women with learning disabilities to understand and recognise abuse and develop strategies to keep safe

- Advice and counselling – someone to listen and talk to

- Development of reliable trusting relationships

- Promoting access to other services for a traditionally excluded group of women

- Translation of complex information and support in formal meetings

- A non-judgemental approach

- Provision of long-term support to reinforce messages

- Building confidence and self-esteem

- Support to address areas of disadvantage and inequality reflecting the complexity of women’s lives in relation to health; housing; personal safety; finance; education; relationship issues; emotional and mental health issues; isolation; and communication

There is also a need for specialist support for the children of women with learning disabilities who have experienced GBV. To date, there is limited evidence on this (see McCarthy, 2019).

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About the authors

Gillian MacIntyre is a Senior Lecturer in Social Work and is Programme Lead for the Postgraduate Certificate in Mental Health Social Work. She has many years of experience in carrying out research with people with learning disabilities and people with mental health problems and has particular interests in citizenship, social inclusion and human rights. Her recent work has focused on the experiences of women with learning disabilities who are survivors of Gender Based Violence.

Ailsa Stewart is a qualified social worker and retired University Lecturer, now working independently, who has over 25 years experience in carrying out social research principally with adults. She has worked extensively with adults with learning disabilities and people with mental health problems. Her particular research interests are the support and protection of adults, inclusion, human rights and citizenship. Most recently she has worked on exploring the experiences of women with learning disabilities who are survivors of gender based violence.

This work is licensed under the Creative Commons Attribution-Non Commercial-Share Alike 2.5 UK: Scotland Licence.To view a copy of this licence, visit https://creativecommons.org/licenses/by-nc-sa/2.5/scotland/ Copyright © August 2022

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