Deinstitutionalisation Under Siege: A network for deinstitutionalisation of persons with disabilities in the Middle East
Lead Research Organisation:
University of Birmingham
Department Name: Education
Abstract
It is estimated that up to 15% of people with disabilities live in institutional care globally - 150 million people (UN, 2018), and this is likely to be an underestimate. Empirical evidence has shown that institutionalisation results in negative outcomes for children and adults, which has been further heightened during the Covid-19 pandemic, where there were disproportionate numbers of deaths of persons with disabilities in care institutions. The issue of deinstitutionalisation is of pressing global importance as highlighted at the Global Disability Summit 2022. The proposed network, 'De-institutionalisation Under Siege', a network on deinstitutionalisation for people with disabilities in Lebanon and Palestine (West Bank and Gaza) is timely given the UN's work since 2020 on developing guidelines on deinstitutionalisation for persons with disabilities. In June 2022, a call was issued for submissions on guidelines on deinstitutionalisation including in emergencies Committee on the Rights of Persons with Disabilities, with a particular interest in obtaining evidence from persons with disabilities through representative civil society organisations. There is, however, a tension between the international impetus to deinstitutionalise and insufficient infrastructure within communities, particularly in Global South contexts, to support people with disabilities remaining with their families and living in communities. Our proposed network is unique and innovative in that it will use creative arts and humanities methods to capture lived experiences and views on disability, and leverage a range of existing international partnerships, whilst building new ones with specific expertise on deinstitutionalisation, and collecting data in an under-researched but highly significant and timely topic. This proposed network will be led by Professor Dina Kiwan (University of Birmingham, UK) in conjunction with Centre for Lebanese Studies (Dr. Maha Shuayb), Birzeit University (Professor Rita Giacaman) and Islamic University of Gaza (Dr. Nazmi al-Masri) which will build on the work of our current AHRC GCRF Network 'Disability Under Siege' (DUS), funded by the AHRC (£2M; 2020-2024), where we are addressing the challenge that most children with disabilities in the region never go to school. This new network's added value is to focus specifically on the topic of deinstitutionalisation, bringing in additional specialist project partners with expertise in this area. It is anticipated that the network will be made up of a range of stakeholders, enabling dialogue between policymakers including, UN organisations, disability activists and NGOs, people with disabilities, family members, and institutions themselves.
Publications
Giacaman R
(2023)
The Limitations of Deinstitutionalization: The Case of the Israeli-Occupied Palestinian West Bank
in Journal of Palestine Studies
Shuayb, I
(2023)
Deinstitutionalisation of individuals with disabilities in Lebanon
| Description | The project has produced three literature reviews providing an overview of the evidence on institutionalisation of persons with disabilities in the target countries and territories (West Bank, Gaza, and Lebanon). These highlight the lack of data on institutions, particulary for people who have impiaments other than mental health conditions. It also found that there was a lack of legal framework to govern conditions in institutions and where policy existed, there were usually not enforced. The reviews found a significant lack of capacity in providing community services for people with disabilities, and that stigma and stereotypes contributed to institutionalisation. This was compounded by deinstitutionalisation agendas not considering local contexts. Two small scale projects were undertaken in each of Lebanon and Palestine on deinstitutionalisation involving visits to institutions for those with disabilities. The project in Lebanon was a media-oriented project highlighting the conditions of those with disabilities living in institutionalised settings. The project in Gaza examined the experiences of institutions for those with disabilities since October 2023. |
| Exploitation Route | The literature reviews highlight key research priorities which can be taken forward either by members of the network, or other researchers, activists, and NGOs. The project plans on building on these findings through pilot projects and cultural activities to draw attention to the topic of deinstitutitionalisation, and these conversations can be taken forward by stakeholders involved in the activities in their own practice. |
| Sectors | Communities and Social Services/Policy Creative Economy Healthcare Government Democracy and Justice Culture Heritage Museums and Collections |
| URL | https://disabilityundersiege.org/reources-publications/ |
| Description | This work has raised public awareness and awareness with policy and practitioners professionals with regards to the issues relating to deinstitutionalisation of people with disabilities . There are particular context-specific barriers to deinstitutionalisation that have been highlighted to policymakers and practitioners as well as families in the local communities. It is envisioned that this will help in developing appropriate community resources for those with people with disabilities whilst at the same time acknowledging the very challenging contexts of conflict. |
| First Year Of Impact | 2024 |
| Sector | Communities and Social Services/Policy |
| Impact Types | Societal |
| Description | Emergency Rehabilitation and Immediate Intervention Program for Persons with Disabilities (ERP) IUG & Al Quds |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | The Emergency Rehabilitation and Immediate Intervention Program (ERP) for Persons with Disabilities was successfully implemented as a short-term training initiative to empower 48 persons with disabilities in the Al Nahda Displacement Center in Deir al-Balah, Gaza Strip (21 males and 27 females), with basic skills to deal with emergencies during war. Over three training days from 16/1/2025 to 5/2/2025, the procurement process was carried out before the start of the practical training, inviting persons with motor disabilities, visual disabilities and hearing disabilities, which was carried out by Dr. Nismah al-Ghoul, a researcher in the project who is a person with disabilities and the head of the Al Nahda Displacement Center. Interactive workshops were implemented over three consecutive days, starting with a pre-assessment, simulation exercises, and case studies focusing on emergency response, daily life management, psychological support, and safety planning, followed by a post-assessment, noting that the training design was tailored to the specific needs of each disability category, ensuring inclusiveness and accessibility. The project provided participants with real-life skills by empowering them with practical skills to deal with the challenges they face in the southern Gaza Strip. Participants gained knowledge in self-protection, time management, and psychological resilience, enabling them to act more independently and confidently in emergency situations. The psychosocial support component helped mitigate the psychological effects of war, and enhance resilience and mutual support when they are within their communities. By empowering persons with disabilities to play an active role in their safety and well-being, the project challenged the stereotype of persons with disabilities as passive recipients of aid, and promoted inclusiveness and self-reliance in this highly vulnerable group. This initiative not only addressed immediate needs, but also laid the foundation for strengthening resilience and long-term empowerment in the Gaza Strip. The trainer, Dr. Saeed Nabhan, a trainer specializing in crises, emergencies, and mental health, participated in the training with Dr. Nismah Al-Ghoul, a researcher in the project who is a person with a disability and the head of the Al-Nahda Displacement Center, and Dr. Bahaa Sarhan, an academic in the field of inclusive education, in cooperation with the research team, Dr. Hazem Shehadeh and Dr. Saeed Awad from Al-Quds University On the third day, a sign language interpreter, Ms. Rania Abu Shriteh, was used. Most participants noted a difference between their pre- and post-training information, indicating that they benefited greatly from the training. Details of the feedback are attached at the end of this report. A video was also uploaded to show the documentation of the activities in the field. The Emergency Rehabilitation and Immediate Intervention Program for Persons with Disabilities (ERP) project made a tangible difference in several aspects: a. Impact on policies and services The project contributed to influencing policies and services by providing a practical model for training persons with disabilities in emergency skills, which could be the basis for developing more inclusive policies in disaster management. In addition, the project increased awareness of the needs of this group in times of crisis, which could lead to improved services provided to them. Finally, the project provided data and recommendations that can be used to support the development of policies that are more responsive to the needs of persons with disabilities. b. Behavioural change: Participants were able to develop new skills in dealing with emergencies, such as time management, self-protection, and providing psychological support. This led to a change in their daily behaviors, as they became more prepared and able to act effectively in crises. c. Enhancing understanding and discussions: The project contributed to changing the societal perception of persons with disabilities from being mere recipients of aid to active actors capable of contributing to protecting themselves and their communities. The project also sparked discussions on the importance of providing similar trainings to other groups in society. d. Capacity Building: Through intensive training, participants' capacities were built in the areas of emergency response, daily life management, and psychological support. Local trainers' skills in providing inclusive trainings adapted to the needs of persons with disabilities were also enhanced. e. Impact on policies and services: Although the project was not directly focused on policy change, it provided a model that local and international agencies could build on to improve emergency services provided to persons with disabilities in conflict zones. The project contributed to advancing the organization's broader goals of promoting the rights of persons with disabilities and their inclusion in society. Through this activity, the following actions were taken: a. Promote inclusiveness: The project demonstrated that persons with disabilities can be active actors in their communities, especially in times of crisis. b. Build partnerships: Cooperation with local organizations working in the field of disability was strengthened, opening up prospects for future joint projects. c. Enhance reputation: The project contributed to enhancing the reputation of the researchers as a leading team in providing innovative and inclusive solutions for persons with disabilities in conflict zones. We have plans to enhance and expand this project in the future based on the positive results achieved. First, we aim to expand the project to other areas in the Gaza Strip and additional segments of society, such as the elderly and children with disabilities, to ensure greater inclusiveness. Second, we will develop more interactive training tools using assistive technology, such as electronic applications and audio-visual materials, to enhance the participants' experience and ensure broader access. Third, we will establish a mechanism to follow up with participants to ensure the project's impact continues and support them in applying what they have learned in their daily lives. Fourth, we will strengthen cooperation with local and international bodies to adopt the project's recommendations into disaster management policies, which will contribute to improving services provided to persons with disabilities on a broader level. Finally, we will seek to secure additional funding to implement similar projects in other conflict-affected areas, which will enhance the project's impact and create a lasting legacy of empowering persons with disabilities around the world. |
| Year(s) Of Engagement Activity | 2025 |
| Description | Inclusive media and deinstitutionalisation awareness campaign in Lebanon (Dr Itab Shuayb) |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Working closely with disability activists and representatives from disability organisations, media specialists established a network and involved them in the development of the disability inclusive awareness campaign. They also ensured the co-participation of people who have been institutionalized. The awareness campaign consisted of reports, articles, radio segments, and video documentaries. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://disability-hub.com/ |
| Description | Media visits to variety of disability institutions in Lebanon (Dr Itab Shuayb) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Four media specialists visited four disability institutions, with each person visiting a different disability organization in a separate district in Lebanon to document and learn more about the living conditions and the services provided for people with disabilities. The four disability activists and representatives from disability organisations facilitated the visits. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Online meeting on disability deinstitutionalisation for activists, organisations and media specialists in Lebanon (Dr Itab Shuayb) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A virtual meeting was organised and led by Dr Itab Shuayb with disability activists, members of disability organisations and four media specialists to introduce them to the concept of deinstitutionalization and provide the historical context of the institutionalization of people with disabilities globally and in Lebanon. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Three disability Institution visits by researcher Suzan Mitwalli |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Schools |
| Results and Impact | Dr Suzan Mitwalli visited three disability institutions across Palestine to understand their inner workings and interview staff. They consisted of: an institution for persons with intellectual disabilities, a school for persons with hearing and speech disabilities and a school for persons with visual disabilities. These visits changed the way Suzan considered disability institutions and further shaped her research and recommendations for future approaches to deinstitutionalisation. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Workshop based on deinstitutionalization findings in Palestine (Rita Giacaman, Suzan Mitwalli, Shatha Abu Srour) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Face to face workshop with stakeholders discussing some of the issues related to the institutional research visits and highlighting the issues of what de-institutionalization means in the local context in Palestine. The group discussed the the oPt now, later or not at all options and why each one might be chosen. |
| Year(s) Of Engagement Activity | 2024 |