Report Without Pictures

Introduction
The context of this project was a long-stay hostel for adults with severe learning disabilities which was due for closure in the not-too-distant future, with the tenants transferring to a supported housing arrangement. This is a significant event in the lives of the tenants (and staff), many of whom have been there for twenty years or more. The aim of the project was to facilitate the ‘voice’ of the people with learning difficulties during this difficult transition period. Whilst the move from hostels to being supported in your own home is long overdue and welcomed, this is nonetheless likely to be an emotional time for many people: moving home for the first time in over twenty years is in itself a major upheaval, to also lose friends and possibly even key members of staff who have supported you, makes this a very significant event.

A history of an institution
The 'Our Home' project involved engaging tenants of a long stay hostel for adults with learning disabilities in a participatory photography project focusing on their lives in Bankside Hostel.

Bankside is a long stay hostel for adults with what are termed 'severe and profound' learning disabilities in a town in the North West of England. Bankside has been in operation for 27 years, but was originally designed as a temporary structure and as such has long outlasted its intended lifespan. The building is typical of similar structures erected across the country during the early 1970's and is located at the back end of a housing estate, out of public view.

The closure of Bankside is very much in keeping with the vision set out in the Government White Paper ' Valuing People ' (DOH, 2001), being directly linked to two of the key objectives - ' to enable people with learning disabilities and their families to have greater choice and control over where and how they live ' and ' to enable people with learning disabilities to lead full and purposeful lives within their community and to develop a range of friendships, activities and relationships '. In relation to housing, the emphasis on moving away from congregate living is key to the Government's objective; it is anticipated that this in turn will create opportunities for tenants to become more active members of the community in which they live.

The tenants of Bankside face major changes and disruptions to the pattern of their daily lives. While these changes may have (and are intended to have) positive effects on people's lives, it is impossible to determine in advance exactly what these changes will mean for tenants. Not only will they experience changes in the location and physical structure of their accommodation, they will also be subject to further changes such as who they live and interact with on a daily basis including, in some cases, changes in their support staff.

There is evidence to suggest that these changes are already provoking anxiety amongst some tenants. For example, several of the tenants who lived semi-independently in a bungalow in the grounds of Bankside expressed their feelings of distress (verbally and in some cases behaviourally) to us and hostel staff when the bungalow was demolished. This is not surprising, particularly given the close proximity of the main hostel to the old bungalow, providing them, in effect, with a front row seat for the destruction of their former home (a fairly forceful demolition as some of the photos depict).

Although support staff have been working hard in an effort to prepare tenants for the upcoming changes, it is difficult for anyone to prepare for changes they have not yet experienced. Because some tenants do not communicate verbally, accessing their experiences and perceptions about these changes (anticipated and realized) in their lives may not be straightforward.

Hostel tenants may not have a large variety of choice about with whom and how they relate, however they do have some measure of choice and these preferences, where staff could ascertain them, will be reified in the new living arrangements after the hostel is closed. Tenants will be living in smaller groups and in different locations isolated from one another. If they can be supported to live and develop relationships in the wider community, this move may be a very positive thing. Whatever happens, this move will constitute a major change for the tenants of Bankside, some of whom have been living in the hostel for their entire adult lives.

Methodology

'Photovoice involves giving people cameras and using the pictures they take to amplify their place in and experience of the world. It puts people in charge of how they represent themselves and how they depict their situation'.

(Booth and Booth, 2003)

An introduction to participatory photography
In the anticipation of Bankside Hostel's imminent closure, we felt that working with tenants on a participatory, photographic project dealing with the hostel as their home might be a way of engaging people in considering what this place has meant to them and providing them with a photographic record of the buildings, artefacts and people that for many years have made it their home. We also hoped this project might provide a means of better understanding what tenants might like to change (and keep the same) as they move into new types of housing and living arrangements.

Participatory photography is a methodology in which those who would normally be the subjects (or objects) of research, engage in photography as a means of expressing themselves and participating in that research. Participatory photography is a potentially engaging and accessible way of working with people who have trouble accessing textual and or verbal forms of communication, particularly those whose 'literacy, cognitive and communication skills are impaired' (Woorlrych, 2001). In doing participatory photography, participants are encouraged to photograph aspects of their lives, or be involved in the decision-making of what to photograph and then to consider what the resulting images mean to them. This process is sometimes referred to as 'photovoice' a term coined by Caroline Wang and Mary Ann Burris, two researchers from the University of Michigan working in the field of health education (Wang, Cash and Powers, 2000).

Work in the hostel
It was crucial that staff as well as tenants understood the nature and purpose of the project and felt they had some ownership of it. It was therefore felt important that the project was clearly communicated to both of these groups. Tenants were informed through an accessible letter with words and pictures to be read and explained to them (if necessary) by members of staff. The project was also explained to tenants in person by the researchers. Staff were also informed by letter, in person by the researchers and through the manager of the hostel.

Ultimately, seven of the 12 hostel tenants participated most directly in the project. Several other tenants expressed some interest and participated in the taking of a few photographs, whilst others expressed no interest or chose not to be involved. Five members of staff were involved to varying degrees in the project.

Three of the seven primary tenant participants in the project took many of their own photographs, another two did not choose to (or were unable to) take photographs themselves, but clearly indicated what and where they wanted researchers to point the camera. The remaining two primary participants (the participants with the most severe levels of disability and communication difficulty) were unable to take photographs or indicate clearly what they wanted photographed and so researchers took photographs of places and artifacts these tenants were interested in (as determined by working with these tenants and their support staff).

All tenants who participated in the project viewed their photographs on a laptop and in printed form, spent time with the researchers viewing and discussing (when possible) their images and received an individual photo album with 8 x 10 sized prints of their photographs. All participants expressed interest in the project throughout and many showed high levels of interest in both the taking of and consideration of their photographs.

Working with a consultant
There is a growing commitment to the involvement of service users in research and the production of knowledge about their experiences; this is reflected in recent government policy where considerable emphasis is placed on service users' involvement in the development of research, policy and practice (e.g. DfES 2003; DH 2001). Members of the research team have considerable experience of research employing participatory and partnership approaches, e.g. people with learning difficulties' perspectives on friendships and relationships (Carson and Docherty 2002).

It was clear from the outset that some of the more severely disabled tenants would require support to participate in the project; members of the research team were mindful of the fact that, regardless of their experience of participatory and partnership approaches, experience of undertaking research with people who have more severe learning disabilities was limited. Much has been written about the challenges of involving people with severe learning disabilities in the research process (Grove et al 1999, Kiernan 1999), such challenges are often cited as justification for excluding this group of people. Ware (2003) however, suggests that whilst we may not be able to collect the views of people with profound and multiple learning disabilities with any degree of certainty, this should not exclude them from the process. In response to this issue it was felt that a collaborative approach to the research was essential and thus, we sought the help of a consultant with learning disabilities quite early on in the project.

As a result of the project team's involvement in other participatory research projects we were aware of a person with mild learning difficulties who is a member of a local self advocacy group. He also had significant experience of supporting people with more severe disabilities than himself and we felt he would make a valuable contribution to the project as a consultant.

Although the consultant had been involved in some university work (presenting, teaching, writing etc.) the daily workings of a research project were fairly new to him and he considered the work on this project as a learning opportunity. Initially he tended to follow along with what the university researcher was doing without inputting much of his own opinions, comments or ideas, but during the course of the research his confidence grew and he felt able to contribute more directly.

The consultant felt we focused on what was important to tenants of the hostel during our work there. Part of this way of working involved being careful not to upset people as we worked. Sometimes it was difficult to strike a balance between upsetting people unnecessarily and focusing on upsetting issues which might help make people's lives better in the future.

The consultant was very busy outside of the 'Our Home' project with self-advocacy and other work and the project management team was initially uncertain how much time and interest he might have for the project. In the event the consultant was enthusiastic and generous in his commitment to the project. This commitment has manifested itself in a variety of ways and as the consultant has shown interest in being involved in aspects of the project other than the role initially conceived for him, his role has grown. It became clear early in the consultant's involvement in the project that his insights into tenants' experiences and the workings of the project were valuable and so enabling him to influence the project became an important aspect of the work. He has been involved in interviewing staff and tenants, devising and asking questions as well as analysing the data. The consultant has also been involved in working with tenants of the hostel to decide what photos they would like to take, as well as documenting the various stages of demolition and construction of the hostel buildings. He has been involved in documenting social activities for hostel tenants (a tenant's 40 th birthday party and the hostel Christmas party) as well as planning a party for tenants, staff and tenants families in which photographs were presented to tenants. Because of his growing involvement in the workings of the project, his role changed from one of consultant to one more akin to research partner, an evolution which had not been planned or anticipated.

The evolution from consultant to partner was however, not a conceptualization the consultant had made himself and it was one he was initially uncomfortable with, feeling it had been foisted upon him by the other members of the research team. With time, he began to grow more comfortable with his having a different, expanded role (and job description) in the project and to accept the term 'research partner'.

An evolving methodology
At first it seemed practical and desirable to work with 35mm disposable cameras on the project as they are inexpensive, relatively easy to use, robust and colourful. We did attempt to use this type of camera with some success, but the lack of flexibility and control in not being able to make prints ourselves as well as the time lag between taking and viewing the photographs all precipitated a rethink of their usefulness. We changed from using 35mm disposable cameras to using digital cameras. The use of digital cameras allowed tenants (and researchers) to instantly view the images they had taken either on the camera itself, or in larger form on a lap top computer. The large screen size on the back of the digital cameras and on the computer enabled visually impaired tenants to view their images (and potential images) almost instantly and with greater clarity than the tiny viewfinders on 35mm cameras. This change from disposable to digital cameras served as a methodological evolution in the project and increased the ease and accessibility of the process for everyone involved.

In order to obtain the most thorough understanding of the context and process and to bolster the project's validity and reliability, we employed a variety of methods of data collection. We relied on observations, field notes, photo logs (recording who took what photographs along with contextual information), the photographs themselves, and semi structured group and individual interviews with staff and tenants. We considered data throughout the research process in order to inform our continuing practice in the hostel.

The project proved more elaborate and time consuming than we had originally envisaged. The difficulty of attempting to conduct participatory research with (and eliciting the perspectives, preferences and understandings of) a group of people who have difficulty communicating and or do not communicate traditionally, was perhaps underestimated. Gaining some measure of trust from and familiarity with tenants and staff also took more time than had been initially estimated. Issues such as accommodation, freedom, choice, consultation and accessibility in relation to tenant's lives in the hostel are necessarily complex and deserve more time and attention than the modest scope of this project allowed.

Findings
We were able to elicit and record the views of some tenants about their lives in the hostel and evident from the images they took (or participated in taking) and subsequent consideration of these images, were specific aspects of their lives in the hostel which were important to them. This was not the case with all tenants or all images and there was a certain amount of ambiguity concerning the preferences and perspectives behind of certain images. Inevitably, not every photograph depicted something of great importance to tenants and in some cases it was difficult to determine what particular tenants might feel about their images.

Despite some degree of ambiguity in relation to analyzing the images, there were examples in which tenants used the process to make clear statements about their situation. Some statements of preference were more obvious than others and would have been clear without being explicated in this project; for example, one tenant who loves clocks, took many photographs of the clocks on his walls, as they were important to him and he wanted them to be put up in his new room. Even though staff in the hostel knew about this tenant's love of clocks, the photographs did add weight and served as a form of evidence of his preferences. There were less obvious examples as well. Out of the three tenants who lived in the old bungalow, only one felt it was important to photograph the bungalow's kitchen (before the building was knocked down). This tenant does not speak and so it was difficult, at first, to understand why he wanted a photograph of the kitchen, but after discussion with his support staff, we learned that the tenant had on occasion enjoyed cooking with staff in the bungalow's small kitchen. This insight might have been lost were it not for the photograph, and certainly has bearing on what this tenant would like to do in the future.

Generally, tenants photographed spaces, places and artifacts which had positive associations for them, but there were a few instances in which tenants had negative emotional reactions to their images. For example, several tenants exhibited anxiety when viewing photographs of the partly demolished old bungalow. These images were disturbing because it was painful for tenants to view their former home in such a forceful state of deconstruction and also because of the feelings of uncertainty (and potential insecurity) such images provoked in relation to the impending move and tenants' future lives and homes.

Staff participated in the project by helping the researchers and tenants consider and interpret the images they took and also giving the researchers a sense of what non-speaking/non-signing tenants might liked photographed. Certain members of staff were generous in offering their time and insights into tenants' lives in the hostel.

Staff, for the most part, were supportive of the project and some gained insights into the perspectives of particular tenants and the tremendous capacity for engagement in the project which tenants exhibited. For example, several tenants who have severe communication difficulties and typically have rather short attention spans, spent long periods of time with the researchers engaging with the images generated during the project. These tenants' capacity for engagement surprised some members of staff.

Conclusions
It is quite difficult to say precisely to what degree the project was able to facilitate the 'voices' of participants in relation to their experience of significant life change. This is due, in part, to the fact that for most tenants, the life changing closure of the hostel and moving to supported tenancies had not yet happened and was therefore theoretical rather than actual. However, there was evidence that the project facilitated the 'voices' and perspectives of some tenants in relation to their life in the hostel and aspirations for the future, particularly in regards to what spaces and artifacts were important to them in the hostel and what they were uncomfortable with.

An important aspect of the project was a party and presentation of tenants' photographs in the hostel, during which tenants were presented with their individual photo albums (all tenants, including those who did not participate directly or indirectly in the project received some form of photo album). This party was attended by most tenants, some staff and some tenants' families as well. The party provided an opportunity for us to display photographs of tenants and the hostel taken by the tenants and researchers. As part of the display, we hung a series of photographs depicting different stages in the progression of demolition and reconstruction of the hostel bungalows, forming a photo timeline, which tenants, staff and tenants' families were able to view and consider. The tenants seemed very pleased by the party and were particularly happy to receive their photo albums. The importance of ownership, for project participants, of these photographs should not be underestimated and we had some evidence of this as several tenants quickly removed their albums to their own rooms and private spaces. We were told by hostel staff that one tenant (who could not attend the party) upon receipt of his album slept with it under his pillow for several nights.

Many of the project participants showed great pride in their photographs, choosing to display them prominently in their rooms, and expressed their enjoyment and interest in the project, an interest that was sustained over many months. Several tenants were inspired and encouraged through the project to take up photography and purchase cameras for themselves.

The participation of people with severe learning disabilities could be better facilitated in the future by working more closely with these peoples' key support staff in making participation in the project more accessible and more meaningful for them. It would have also been beneficial to integrate the project more directly into other aspects of the consultation of tenants such as the creation of their person centered plans. This only happened in a very limited way in the project due to its small scale.

It is intended that an accessible project report will be produced for hostel tenants and staff as well as social services. We will also be writing journal articles and producing conference reports based on the project.

The partnership aspect of the 'Our Home' project in which university researchers have been working with the consultant with learning disabilities has become the focus of an ESRC funded Research Methods Project exploring partnership research. With the support of this funding, the project in the hostel will continue in a limited form as the hostel closes and tenants are moved into their new homes. We are hoping to procure some additional funding in order to continue working with tenants (and staff) after they've moved, in relation to their new lives. In this way we will be able to better understand the impact the move has had on people's lives and how the original project has influenced this process.

References
Booth, T. and Booth, W. (2003). In the Frame: photovoice and mothers with learning difficulties . Disability and Society . 18 (4). pp: 431-442

Carson, I. & Docherty, D. (2002) 'Friendships, Relationships and Issues of Sexuality' in Race, D. [Ed] Learning Disability - A Social Approach , London , Routledge.

Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21 st Century , London , The Stationery Office.

DfES (2003) 'Learning in Partnerships Toolkit', http://www.dfes.gov.uk/learningparttoolkit

Grove, N., Porter, J., Bunning, K. & Olsson, C. (1999) 'See what I mean: Interpreting the meaning of communication by people with severe and profound learning difficulties: Theoretical and methodological issues, Journal of Applied Research in Intellectual Disabilities , 12 (3), pp190-203.

Kiernan, C. (1999) 'Participation in research by people with learning disability: origins and issues, British Journal of Learning Disabilities , 27, pp77-80.

Wang CC, Cash JL, and LS Powers (2000). Who Knows the Streets as Well as the Homeless?: Promoting Personal and Community Action Through Photovoice . Health Promotion Practice, 1 (1): 81-89, 2000

Ware (2003) 'Eliciting the views of pupils with profound and multiple learning difficulties, SLD Experience , 36, pp7-11.

Woolrych, R. (2001). The Tenant's Viewfinder . Community Living, April/May.