That is the message to come out of a unique piece of research undertaken by adults with learning disabilities.
Launched today, 6 March, by the Unit for Development in Intellectual Disabilities (UDID) at the University of Glamorgan in partnership with RCT People First and New Pathways, the research is the first of its kind in the UK to be undertaken by people with learning disabilities about the abuse of people with learning disabilities.
Over the three year duration of the project, funded by the Big Lottery Fund, over 100 men and women took part in the research which included a three day residential session. Participants were encouraged to discuss what they understood by abuse, what society should be doing to protect them, and what support people need if they are abused.
Professor Ruth Northway of the University of Glamorgan explained, “This research is innovative as it was people with learning disabilities who identified the area where they felt research was needed. They then worked with a university department to undertake a piece of substantial academic research. Throughout the process people with learning disabilities worked as researchers, were involved in all key decisions, and in many instances they were the decision makers.”
A number of studies have been carried out in recent years into the occurrences of abuse suffered by this group, but never before has the research been proposed, carried out and disseminated by people with learning disabilities themselves.
Professor Northway continued, “Understandably when asked about abuse participants expressed a range of strong emotions including embarrassment, loss of self-confidence and anger. Most worryingly, however, some participants said how abuse can lead people to feel like taking their life as they feel their life is not worth living. “
“We concluded that people with learning disabilities are aware of different types of abuse but may not receive formal education regarding abuse and keeping safe. Such education is important if people are to protect themselves from abuse and, should they experience abuse, that they are confident to disclose this to someone.
“If people are abused, then it is important that they receive appropriate, acceptable and timely support and participants particularly identified the need for others to be there for people who have been abused and for others to believe them if they disclose abuse. Unfortunately the wider literature and discussion amongst the research team suggested that such supports are not always available.”
Data was gathered from people with learning disabilities in Wales by means of individual interviews, focus groups and questionnaires.
In the questionnaires participants were given a number of strategies that might help keep people safe from abuse and asked to tick those they felt would be helpful. Participants were more likely to tick those strategies they could do for themselves than those that required other people to assist but all strategies were rated highly.
The data gathered was analysed by the research team and indicated that participants were aware of a wide range of different types of abuse. However, whilst some had received education about the nature of abuse others had learnt about it via the media or via friends who had been abused and through personal experience.
When asked what support people need when they have been abused the highest ratings were given to people being there for them, being believed and having support to live their life. The research team noted, however, that whilst these strategies were felt to be helpful the reality of people’s lives is that they are not always listened to and believed.
Key recommendations of the report:
- That people with learning disabilities should have greater access to personal safety/ abuse awareness courses and that they should be involved in the development of such courses
- That when people with learning disabilities disclose abuse other people must listen to them, believe them, do something appropriate and provide support
- That people with learning disabilities who have been abused should have greater access to counselling
- That further research is undertaken regarding the relationship between suicidal thoughts and abuse of people with learning disabilities and concerning the effectiveness of various post-abuse therapeutic interventions for people with learning disabilities.
- That people with learning disabilities should be involved in raising awareness amongst others about the impact of abuse on people
- That in future participatory research careful attention is given as to how people with learning disabilities can be employed for more hours and also that induction is given in relation to employment issues
- That co-researchers have personal assistants where appropriate to support them in their work