Suzan Mitwalli

1. A Human Centred and Community Based Participatory Research Approach to Education Among Young People with Disabilities Living Under Occupation (Research and Engagement funding)

Project Outline

In this project, we aimed to understand the lived experience of young people with disabilities (PWDs) in the West Bank of the occupied Palestinian territory (oPt), with a focus on their educational trajectories, through a socio-ecological (and political) approach and using human centred design and community-based participatory research. The project relates to the broader aims of the Disability Under Siege network in terms of focus on the lived experiences of young PWDs in education as well as in adopting a participatory approach that is shaped by a rights-based and capabilities lens rather that the lens of charity and victimhood that is more dominant in the region. We achieved this through working with a participatory action group in a refugee camp to explore the educational and work-related experiences and needs of young persons with disabilities. Guided by the lived experience of the group members and with their direct involvement, we explored the lived experience of other young people with disabilities in the Ramallah district of the West Bank. We, together with the group, mapped and investigated existing services for young people with disabilities in the West Bank. Finally, we co-developed awareness and educational material with our participatory action research group. The findings of working with the participatory action group will be reflected in an academic paper that will trace and describe the experience of working with a group of young people with disabilities. We produced a directory of all the organizations that work with people with disabilities in the West Bank, and it will be electronically available on the institute’s website. We had the opportunity to present our experience to a variety of stakeholders in disability work halfway through the project cycle and another time toward the end of the project, where we presented the video-filmed drama sketch that the group members, with the support of the art therapist, produced.

Project Objectives

The project aimed to investigate the lived experiences of young people with disabilities in the West Bank of the occupied Palestinian territory (oPt) with a special focus on their educational trajectories in addition to work opportunities, and social life involvement using human centred design and community based participatory research. The objectives were to shed light on the lived experiences of young people with disabilities in a refugee camp in the West Bank through their active participation throughout the various phases of the project, and to work together to systematically map the institutional context that they must navigate to reach services, identify gaps, and co-develop and produce interventions and materials that can be used to improve the lives and educational experiences of young people with disabilities.   The activities centred on understanding the lived experiences of young people with disabilities through the main methodological approach of participatory action research. The activities were in line with the activities proposed in the proposal but we worked closely with one participatory action group instead of two to allow for greater depth in working with one participatory research group. This allowed for more intensive contact and engagement with the PAR group by increasing the number of meetings, and focusing on their preferences and needs while conducting research. We started with in-depth qualitative research and desk review to better understand the context in which young people with disabilities live and to help to understand their lived experience. We then recruited a group of young people with disabilities (our co-researchers) from al-Jalazone refugee camp; nine young people with disabilities (4 males and 5 females), with whom we worked intensively throughout the research project, and were involved in various phases throughout the study, from planning and priority setting to data collection, analysis, and co-production of outputs and dissemination. We conducted 31 collective meetings with the participatory action group in the period of October 2022-March 2024 in which we built the group, introduced them to basic academic research steps, and worked together on the various steps of the research.   We utilized qualitative research techniques to understand their lived experience in general with a special focus on educational opportunities and constraints (formal and informal), and their work opportunities. We, together with the participatory action group expanded our understandings of the lived experience of other young people with disabilities through co-designing an interview guide, co-conducting twenty interviews with other young people with disabilities, and co-analysing the data together. Prior to starting the data collection, we introduced the group members to basic academic research steps and research ethical considerations. Additionally, we, together with the group members mapped the local organisations that provide a wide range of services to people with disabilities in which we co-conducted 21 interviews with the main organizations. This included organisations providing education, health, legal, and other social and rehabilitation services. We also conducted a three day training for the PAR group by a disability activist on introducing the group to local and international laws regarding disability and the self-empowerment of people with disabilities through increasing their knowledge of their rights and how to advocate for these rights and presenting ideas about economic empowerment. Building on the cumulative work we have done with the group, we co-designed a community intervention with the group members based on their lived experiences and needs. Finally, we organized a dissemination workshop with a number of organizations that work with people with disabilities, where we presented the community intervention the group worked on and facilitated a discussion between the group members and the workshop attendants. Currently, I am finalizing an academic paper focusing on the process and experience of working on participatory action research.     Difficulties encountered in the delivery of the project   One of the main difficulties is the enormous amount of time it takes to work with the participatory action group in contrast to the traditional research methods. It is a process that needs continuous reconsideration and revision of the planning. Each step of the research took longer than expected, given that we needed to respond to the group members’ needs and preferences. In fact, it wasn’t merely research work but also a kind of support group for participants. More time and resources are needed to undertake this kind of research, which funders should consider.   We noticed that most of the group members needed psychological support, so we recruited a professional counsellor specializing in art therapy to work with them on building and enhancing their self-confidence and self-esteem and to facilitate the community intervention that we aimed to make untraditional. This took longer than planned, yet supporting our co-researchers was ethically essential.    Sometimes, there were tensions between the group members and the extra attention they wanted from us, and dealing with such situations required extra energy and effort.   Given that most of the group members couldn’t read or write, we needed to make modifications based on the group’s needs and capabilities. For example, when we, together with the group members, conducted the interviews with other young people with disabilities, we needed to read the questions first to the members who couldn’t read. It was also sometimes challenging to encourage participants with learning disabilities to participate, even with the different facilitation techniques we used.     The mapping of organizations working with people with disabilities took longer than expected. We couldn’t find a trustworthy list of such organisations, so we collected and depended on many sources to prepare a preliminary list to start with. The logistics of the work also took considerable time. Preparing the information and designing the directory took many rounds of editing and reviewing.      The unstable political situation and the escalation of Israeli violence in the West Bank caused delays in the planned activities, primarily due to the frequent attacks on refugee camps, including the camp our group members live in.    The war on the Gaza Strip, which started in October 2023, significantly affected our work with the group, especially at the beginning. The psychological situation of the researchers and the group members made it difficult to meet for some time because the political situation was hugely unstable and unpredictable. And when we started meeting again, we focused on enhancing their psychological well-being.

Findings

The project’s outputs include the qualitative dataset of the meetings memos with the group, which contain detailed information about the participatory group members’ experience as co-researchers and their experiences of education, work opportunities, and social life. An academic paper focusing on the project’s methodological participatory approach is in progress, and the first complete draft is almost ready. The other dataset included the transcripts of the interviews co-conducted with 20 young people with disabilities. A basic analysis has been completed with the group members.   A directory of all organizations that provide health, education, legal, and other social and rehabilitation services for people with disabilities in the West Bank was co-produced with the group members. It includes name of the organization, contact information, location, focus of the work, provided services, and beneficiaries. This directory will benefit people with disabilities by providing information about the available services in addition to community organizations and other organizations working on disability, policymakers, and program designers, as it will give a broad view of the institutional landscape.   The video-filmed drama sketch the participatory action group members acted was a valuable project output. The group members are very proud of this tangible production, which serves as both educational and awareness material about their lived experiences as young people with disabilities and as a policy brief to advocate for meeting their needs.   I also participated in many of Disability under Siege workshops which informed and supported my research project:   Regarding the project’s impact, we adopted and applied a model for participatory action research, which affirms the agency of young people with disabilities in the context of occupation and displacement. This model challenged the prevailing way of traditional research and promoted a model that builds on the capabilities of young people with disabilities. An additional meaningful impact is how our work with the group helped create spaces and outlets for these young people with disabilities to express themselves, be heard and appreciate their capabilities. The produced detailed directory will be the reference for people with disabilities and others to use to access services, obtain information, and investigate possibilities. The group drama sketch will be a powerful educational material to advocate for the rights of young people with disabilities and hopefully contribute to initiatives aiming to affect disability policies.  Additionally, this model of participatory action research can be followed in future research about people with disabilities in other similar contexts in the region and beyond.

2. Training disability activists in qualitative research methods (Research and Engagement Follow-on Fund)

Summary

Building on my project “A Human-Centered and Community-Based Participatory Research Approach to Education Among Young People with Disabilities Living Under Occupation”, we observed a need for training on qualitative research methods that could help disability activities better understand the issues related to people with disabilities. We conducted six sessions of qualitative research training that covered the following topics: research ethics, introduction to scientific research, brief introduction to quantitative research and the difference between quantitative and qualitative research and the importance of both, research question identification, developing appropriate qualitative research methods (observation, interviews, focus group discussions), data collection, coding and data analysis, and report writing. The training contributed to the capacity-building of disability rights activists in qualitative research, enabling them to provide evidence-based research results to policymakers that could help respond to the needs of people with disabilities.

Outcomes/impact

The direct change that the project has achieved is the capacity building of a group of rights disability activists through training on qualitative research methods. The trainees know how to identify and write research questions, recognize the different methods of conducting qualitative research, choose the one most appropriate to their research questions, select study participants, develop the research tools and data collection, and know the basics of coding and analyzing the data, the appropriate structure of the research reports, and understand the principles of research ethics, and become more knowledgeable of their rights as research participants, especially since most of them were previously approached by researchers.     The engagement of the trainees was very high, and they were very interested in asking questions and raising issues for discussion. Some of the interesting questions that the trainees shared are how, as a researcher, to clarify the research aims to the participants clearly, how to bring the participants back to the research subject when they divert away from the research subject, how to research a sensitive topic, how to respect the culture of the research participants, how to be aware not to phrase the interviews questions negatively, and not to lead the participants in a way that pleases the researchers. The participants also asked how to interview people with learning disabilities, how to use different techniques like easy reading and drawing, and whether it would be good to have the specialist working with them during the interview.     Some remarks the trainees raised are how research results can lead to new research topics and that researchers, especially university students, who conduct research as part of their seminars, should avoid researching overdone topics. Some participants also raised the issue that some university students approach them as study participants at the end of the semester and urge them to do the interviews with short notice; this is annoying for them, although they want to help as activists, especially since the research is disability-related. According to them, coordination between different universities is needed to avoid doing the research in the same period and to avoid repeated research topics.      The activity helped our institute’s aims by building the trainees’ research capacity and networking with rights disability activists. It also ensured the institute’s goals and role in serving and helping the local community and informed us of its research needs.     Based on the trainee’s evaluation, having more practical sessions will be helpful, especially for the analysis part.  However, we tried our best to balance between theory and practical exercises, given that the skills vary among the participants and because of the road conditions and the time available for participants to attend face-to-face.

3. Enhancing the psychosocial support skills of specialists working with persons with disabilities through art therapy training. (Impact follow-on funding)

Project Outline

The project aims to train specialists who work with people with different types of disabilities in art and drama therapy and equip them with new techniques for working with their beneficiaries. The plan is to recruit specialists from organizations with a high reach for people with disabilities who are interested in using such methods. There will be 10-15 training sessions in different expressive art therapy techniques and five follow-up sessions. The trainees are expected to apply the techniques they have learned with their beneficiaries, aiming to enhance the mental health and well-being of people with disabilities who need psychosocial support.   We recruited an art therapist to train specialists who work directly with people with disabilities from organizations based in Ramallah- West Bank so the trainees could use these art therapy methods with their beneficiaries.  We conducted 10 face-to-face extended art therapy sessions with 20 participants, in addition to one collective online session and three supervision sessions with subgroups of the participants. The training covered the following topics: the concepts and tools of art therapy and how it can be used in the diagnosis, treatment, and stress relief, the therapeutic story and its elements, and practical session application, drawing and shaping with playdough, sound and movement games and their use in stress relief, music therapy, audio-visual focus exercises, drama activities and games, the use of handicrafts and role play in therapy and stress relief techniques.  The training contributed to the capacity-building of specialists working with people with disabilities in art therapy and will enable them to use art therapy techniques with their beneficiaries of people with disabilities, which is expected to positively affect their wellbeing. Some participants already used some of the training activities with their beneficiaries and reported how these techniques worked well with them.

Findings

Based on my work with a group of young people with disabilities in the participatory action research and the positive feedback we received from them regarding the art therapy approach used by a well-established art therapist, notably how it enhanced their well-being, we decided to conduct art therapy training for specialists who directly work with people with different types of disabilities, to enable them to apply art therapy techniques with their beneficiaries.   I recruited specialists from organizations that work directly with people with disabilities. I emailed the organizations’ directors, describing the training and its elements and asking them to nominate candidates who would benefit from the training and use it with their beneficiaries. The plan was to recruit 10-15 participants, but due to the high demand, we accepted 20 participants.   The art therapist conducted the training while I attended it as an observer. The trainer engaged the trainees very well, and they quickly built trust with one another and fully participated in the training activities. Most trainees were highly committed to attending the training sessions and didn’t want to miss any session unless it was beyond their control. Additionally, the trainees were very happy with the training, finding the group to be a safe space to express themselves and talk freely not only about their professional experience but also on a personal level. The use of art therapy tools in each session provided a real-life experience that reinforced their belief in the importance of using the arts in their work with people with disabilities. Some trainees even applied some activities with their own families and children and reported how powerful they were. People with disabilities were directly involved in the training through the participation of one trainee with a disability and two members with disabilities of the participatory action group. These two members were a valuable asset to the group as they had previously experienced art therapy techniques with the art therapist during their involvement in the PAR group, and their reflections on their previous experience enriched the training. The original plan was to involve them as co-trainers. However, the trainer instead encouraged them to share their insights in a different way by sharing their previous experience and how they coped with their situation and empowered themselves. They also had the opportunity to participate in a group of specialists that provided them with a source of support and encouragement. Additionally, people with disabilities will benefit from this training through the specialists who work with them. Some trainees were enthusiastic about the techniques they learned and had already started applying them with their beneficiaries even before completing the training.

Impact

The project’s direct impact is the capacity building of the trainees who work with people with different types of disabilities and age groups. Some trainees also work with mothers of children with disabilities, and they were particularly keen to apply the techniques they learned, seeing the importance of relieving the mothers’ stress. By implementing the new art therapy techniques, the trainees will hopefully enhance the services provided to people with disabilities.      The trainees admitted that the training was highly beneficial both personally and professionally. Some mentioned that the training came on time for them and that they needed it. Others stated that they became more confident in themselves and their abilities and improved their problem-solving skills. According to the trainer, the group played a therapeutic role, and the training was a journey of change for each group member. Some added that the training was unique compared to other trainings they had attended, which were often more theoretical. In contrast, this training provided them with practical learning in every session. As almost all of them expressed, Each one of the trainees positively influenced the others. The engagement of all participants was very high to the extent that all trainees were fully focused throughout the training sessions. All sessions included lots of fun and building friendships among the trainees in addition to the educational part of the training.    The training helped the trainees share their professional and personal experiences in a safe, non-formal setting, and art therapy allows and facilitates this exchange. They gained skills and techniques that will help them in introducing new ways of working with their beneficiaries, thus hopefully leading to new understandings about disability and creative ways of working with people with disabilities that can have a more positive effect on them, like what we have found in our working with the participatory action group and how the two members who attended this training perceived their disability differently due to the space the art therapy allows, and they were able to develop and discover their capabilities.       The training activity helped our institute’s aims by marinating and strengthening the collaboration and the good relation with the local organizations working with people with disabilities. It also comes with the institute’s goals and role of serving and helping the local community, and contributing to capacity building of specialists working in these local organizations.     Based on the trainees’ reflections, offering such training is highly recommended and needed. It could be replicated with different groups of people, enhancing the well-being of the trainees and the beneficiaries they work with.