Although the research was inclusive and user-led, one could argue that the methodology and role of the researchers identify that the analysis potentially has elements of the emancipatory paradigm within it. The emancipatory disability research model is generally associated with qualitative data collection strategies and is concerned with the transformation of social relations of research production. The Centre for Disability Studies, Leeds refer to emancipatory research as an opportunity for ‘disabled people and their organisations, rather than professional academics and researchers, to have control of the research process’, (Barnes, 2001). This particular approach to researching means that disabled people are in control of the process from start to finish. Researchers without a disability may also be involved but they are accountable to the advisory group which is made up solely disabled members. This paradigm challenges the power structures traditionally associated with process of disability research and has the potential to make disability research more relevant to the lives of disabled people (Oliver, 1992).
The main aim of the project was to promote inclusion and independence for people with learning difficulties and to find ways of freeing people with learning difficulties from the control of others. The Jospeph Rowntree Foundation supported this study as part of its programme of research and innovative development projects and hoped that it would be of value to policy makers, practitioners and service users.
To establish the researchers target audience one must identify which foundations the key findings are based upon. Above all the research draws attention to the barriers and constraints the team had to overcome in order to be accepted as professional researchers. The researchers felt that they were not taken seriously by their support people and other working partnerships because of the stigma attached to learning difficulties.
The research highlighted that the more choices people with learning difficulties had, the more they were included in their local community. The data collected from the work surrounding the ‘circle of friends model’ identified that the more independently a person lives, the more people they know. This is apparent at the other end of the scale which observed that the people living at home with their parents knew the fewest people and had the fewest choices. The researchers found that people living in a community based setting had more choices, were treated more like equals and could do more of what they wanted. However, people who lived in residential places had less choice, this it was said, was partly due to the nature of the home and the limitations on support staff. Some people interviewed felt that they did not receive enough support to manage their lives and were left to struggle by themselves. (Joseph Rowntree Foundation, 2007).
The nature of the research above all, raises ones awareness to the barriers people with learning difficulties have to overcome to be accepted as a member of society. There is a clear feeling of frustration from the researchers as they describe how they struggled to be taken seriously by not only the people that support them but the organisations they worked in partnership with. This point highlights the fact that a subtle form of discrimination still exists in society today, which in turn distorts the UK Governments vision for disabled people in Britain which was set out in 2005 whereby:
By 2025 disabled people … should have full opportunities and
choices to improve their quality of life, and will be respected and included as equal members of society. (Prime Minister’s Strategy Unit, 2005: 44 cited in Deal, 2007)
The findings strongly promote independent living within a community setting as the most beneficial living style for maximising inclusion and choices for people with a learning disability. Reading between the lines, there appears to be a shortage of supported community schemes for adults with learning disabilities, therefore is the research an attempt to target the Government and Housing Corporation with a view to influence the development of policies surrounding future housing needs and requirements? The Department of Health Survey of Adults with Learning Difficulties (2005) supports this claim, with recent survey results revealing that 50% are still living with their parents and a further 12% living with other relatives (Purdam et al, 2008).
The research also raised concerns that some people seem to have ‘slipped through the net’ with regards to the Supporting People initiative and the Direct Payments scheme and as a result are not receiving enough support to enable them to live independently. This draws attention again to government policies surrounding welfare as well as human rights.
The fact that safe modes of transport are often in limited supply for people with learning difficulties leads to the restriction of choice regarding access to leisure and employment opportunities. A recent national Survey of Adults with Learning Disabilities in he United Kingdom found that 65% of people with learning disabilities who were unemployed and were able to work said that they would like to work (Purdam et al, 2008). This point highlights a weakness in the services surrounding access to employment and furthermore identifies the lack of opportunity to earn a living and have an identity. In general people of working age tend to define themselves by their work and their work life responsibilities. Giddens describes how certain characteristics of work are important for self identity and how ‘in modern societies having a job is important for sustaining self esteem’ Giddens (2006: 415).
The study supports the significant policy development which was recommended in the ‘Transforming the life chances of Disabled People’ report (2005) that service user’s view independent living as a way of putting people with learning difficulties in control of their lives thus enabling them to participate fully in society (). However, the key findings of the project clearly identify that social exclusion still surrounds the lives of people with learning difficulties and therefore limits their choices.
There is a significant link between social exclusion and poverty, due to shortage of opportunities and limited choices, the majority of people with learning difficulties will spend their entire lives being financially dependent on the state. There are a wide range of further education programmes targeted at people with learning difficulties however there are very few employment opportunities to justify the levels of training and education (Davies, 2002).
The theme of study for ‘Our lives, our communities’ therefore draws on the theory that the research is a class based analysis as all the participants were financially dependent on welfare benefits, lived in the same geographical region and overall were not a true sample from all sections of the population. Despite the shift of power in this particular research project, class is still commonly associated with people with learning difficulties due to money, control, exclusion, poverty and an overall lack of power.
By publishing this research, the Fresh Start team have been given the opportunity to promote their abilities instead of their disabilities to the rest of society. This is a positive step towards raising public awareness and changing attitudes by attempting to remove the stigmas attached to people with learning difficulties. By completing a successful research project in this particular way the Fresh Start team may have encouraged others with learning difficulties to empower themselves into taking more control over their futures.
The research found that by having more choice there was a lesser chance of a person being socially excluded. This highlighted a weakness in the levels of independent support available for carers and parents. It was found that more training was necessary to enable more choices for people with learning difficulties by not over supporting them.
A shortage of information relating to human rights and equal opportunities for people with learning difficulties was thought prevented the development of skills and experience. Furthermore the research found that not one of interviewees with learning difficulties had control over their finances, this was felt by the team to be a major obstacle in having choices.
The research appears to meet the overall aims of the researchers, as well as highlighting some wider social issues and weaknesses. Therefore one must consider that the methods the researchers used during this project were appropriate and met the needs of the service users. However, Aldridge argues that the use of qualitative methods amongst vulnerable groups, such as people with learning disabilities, ‘must reconcile the conflict between meeting recognised academic criteria, or measures of research strength, while at the same time appropriately and effectively representing the experiences and needs of vulnerable respondents’ (Aldridge, 2007: 2).
(Aldridge, 2007) goes on to suggest the use of more appropriate participatory research methods which include photographic participation and elicitation techniques as a more effective way of including vulnerable people in social research studies.
The Fresh Start team tested their research methods before starting their interviews and observations. The team did a series of pilots with other people they knew with learning difficulties to check the suitability of the questions and to test the format of the research. The pilot found that videoing was not appropriate as it would not have been suitable to use video when in public places. The pilot also highlighted the fact that research would take longer to conduct than what was originally expected, this was because arrangements had to be kept flexible as transport was often a problem to organise. It also highlighted the difficulties in attempting to see every friend or relative within a limited time.
The research was user-led and was controlled by people living with learning difficulties, thus power was shifted from the ‘expert’ as in traditionally research to the ‘user’ as in the emancipatory paradigm. The development of the emancipatory paradigm by the Joseph Rowntree Foundation was done with a view to making disability research more relevant to the lives of disabled people. The role of the researcher in disability research often raises issues on one hand it is argued that the role of non-disabled researchers lack personal experience of disabling barriers whereas on other hand it is felt that both disabled and non-disabled researchers both contribute to disability theory and research (Barnes, 2001). With regards to the researchers in this project they appeared to at times take things personally and to heart. The report discusses that certain researchers felt insulted when the people they were interviewing were taken advantage of or disrespected.
In conclusion the research raises a number of other issues which need to be addressed. The report highlights the future housing needs required to enable people with learning difficulties to be able live as independently as possible. The lack of suitable information focussed at people with learning difficulties regarding welfare and human rights. A major issue which had an effect on the majority of people interviewed was the shortage of safe and reliable transport, this it was felt prevented people making choices. There appeared to be limited paid employment opportunities for people with learning difficulties, the report recommends that more could be done to support agencies such as MENCAP or MIND to promote employment support projects. Furthermore the report findings enable the Joseph Rowntree Foundation and other organisations to establish separate research projects on the specific issues raised.
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