The recent events at Winterbourne View refocused attention on abuse of people with learning disabilities, and there is an acceptance of the need for system wide change as a result of the enquiries that followed the uncovering of these events.
That change has posited the need to close Winterbourne View type services and help people to be supported in their local communities and enable local services to develop experience and expertise in delivering that support. However, the published studies tell us that abuse also occurs in community settings, with a growing concern being expressed about the levels of hate crime experienced by people living in the community.
We posted recently about a major study which suggested that almost 9 out of every 10 people with disabilities had been harassed or bullied and that this is not only common as an experience, but a regular occurrence for some people.
Whilst there is an increasing literature uncovering and recognising abuse and its signs, it is only recently that the voice and experience of people with learning disabilities themselves has come to be heard in this literature.
The current study aimed to add to this voice. The project ran for three years as a collaborative venture between the University of Glamorgan, Rhondda Cynon People First and New Pathways. The overall aims of the project were to develop better ways for people with learning disabilities to find support after being abused and to prevent abuse, learn about participatory research and to disseminate the findings widely.
The paper we are looking at in this blog looked at one key aspect of the project, which was to address the question of how people with learning disabilities viewed abuse and abusers.
The researchers worked with 47 people ((40% women, 60% men) who were recruited through People First advocacy groups. All the participants took part in one of seven focus groups and 14 people also took part in individual interviews. Whilst the researchers did not do any formal assessment of the degree of learning disability of the participants, given the level of involvement in groups and interviews, they believe the participants would be considered to have mild or moderate learning disabilities.
One of the interesting aspects of the data collection was that it took place at a residential event that lasted three days. This meant that there was an opportunity to engage with people on the topic for a concentrated period of time, but given the sensitive nature of the topic and the emotional content of some of the groups and interviews, it also meant that both participants and researchers became very tired at times.
The data from the focus groups and interviews were analysed separately and in a two stage process. The first stage identified key themes which were shared with the group via a presentation enabling a deeper conversation around those themes. The authors point out that it also gave co-researchers with a disability to “relate the comments made by participants to the lived reality of having an intellectual disability: a level of understanding that other members of the research team did not possess.”
The researchers were keen throughout to ensure that people knew they were not asking about personal experiences of abuse, but as abuse was a common feature in the lives of people with learning disabilities, it became a personal issue and a number of people did talk about their personal experiences, which the researchers were keen to point out, was dealt with appropriately through the working with local procedures.
The themes that emerged and were discussed by participants were identified as follows:
i. Severity of Abuse
The researchers asked people to consider if they thought one form of abuse was worse than another and the form most often considered the worst was sexual abuse. One person made the case for this to be emotional abuse, pointing out that this can be difficult to share with others because of the way it made a person feel. One person also drew attention to a subjective element in the definition, pointing out that what might feel like abuse to one person being abused, may not be to another.
ii. Emotions and feelings
Some participants pointed out that the strength of feeling they had about abuse could make it difficult for them to find the right words and express that feeling appropriately.
Some people shared that this had, in the past, meant that these feelings had been expressed physically, which means that some people had been labelled as having a challenging behaviour, when they had expressed an understandable response.
Some people also talked about being embarrassed about the abuse and that this may go some way to explain the under-reporting of abuse amongst people with learning disabilities.
There was also a strong sense of injustice and incredulity about abuse. Participants had seen the TV programme in which the events at Winterbourne view had been exposed and they were left feeling at a loss as to how one person could act in such a seemingly heartless way to another.
There were also feelings of low self esteem expressed by people who had suffered abuse and a number of people indicating how abuse could lead to self-harm or even suicide. The researchers point out that where abuse is happening continuously (not uncommon for some people as suggested by previous research) that this can lead to a sense of hopelessness about the future.
iii. What should happen to abusers
As mentioned, the participants felt a sense of injustice in that many people were unclear about what happened and sometimes they felt nothing happened at all. Some people felt that the punishments did not always fit the crime, although there were comments from some people that at least as a result of recent events there were the beginnings of better systems in place and a sense that people were being listened to more when they reported abuse.
It was clear that people felt that if a staff member was guilty of abuse they should be prosecuted and at the very least, should not be able to work in care work again.
Conclusion and Comment
This is a major participatory research project that has spanned a number of years and worked with co-researchers with disabilities and advocacy groups to recruit and work with people with disabilities around a sensitive and often emotional issue. The paper we are reporting on here has focused in particular on people’s views about abuse and abusers.
The focus group approach and the two stage approach to analysing themes meant that it was possible to be iterative in the development of the ideas. The themes were shared with the groups and this led to further discussions in detail.
One of the strengths of the project, alluded to by the researchers was the fact that co-researchers with a learning disability were able to relate what was being said by participants to lived experience.
The project however set out to try to listen to people’s views about abuse, rather than personal experiences, but of course many people wanted to talk about their personal experience.
What also emerged was that there was a subjective dimension to abuse as a concept, in that some people felt that what might be experienced as abuse by one person may not be experienced that way by another. The researchers point out that they did not offer a specific definition of abuse and whilst this may be considered a potential weakness, it opened up the possibility of the discussion of subjective ideas of abuse. It raised the question of how to respond to someone who may feel they are being abused whilst what is happening may not fit the objective definition of abuse.
The nature of the data collection, through focus groups and interviews also meant that the project did not seek the views of people with severe or profound learning disabilities. Whilst this may be a weakness in understanding the issues, there was a clear description of the participants and so this element of the project was made clear.
One of the suggestions that emerged from the focus groups in relation to reducing abuse was to help those who are perpetrators to better understand the impact of their abuse. The researchers suggest that this approach could help to alter the balance of power back in favour of those who have been abused and suggest that service providers may consider developing programmes to introduce this approach.
It is clear from the transcript of comments that are available in the paper that people were able to provide meaningful accounts of their experiences and consider some of the broader issues relating to what happens to those who experience abuse and those who are abusers.
The research also adds to the understanding of the process that may lie behind under-reporting of abuse and may offer some insight in what people who involved in supported people with learning disabilities need to be aware of if they are to offer support at the right time and in the right way.
How do people with intellectual disabilities view abuse and abusers?, Northway R et al., in Journal of Intellectual Disabilities, 17,4, 361-375
Download the full report here: Looking into Abuse: Research by People with Learning Disabilities, Looking into Abuse Research Team