Developing capacity for youth disability advocacy through networking in East Africa
Lead Research Organisation:
Bournemouth University
Department Name: Faculty of Media and Communication
Abstract
Working through Action on Disability and Development's (ADD) Young Leaders programme and utilising the knowledge, expertise and networks of our partners, this project will equip a new generation of disability activists in East Africa with the tools, skills, and resources required to build powerful movements for change. This will centre around a programme of knowledge exchange between young East African disability activists (working in Tanzania, Uganda and Sudan), academics, international campaigning organisations, and existing disability networks. The programme will enable disability activists to a) influence governments, international development actors, and the private sector to adopt practices and design policies and services, at a local, national, and global level, which consider the needs of disabled people; and b) challenge the stigma of disability through developing their public voice and influencing media outlets to increase and improve the representation of disabled people.
Through networking, we will fuse academic research with practice in the fields of disability studies, political science, policy, education, advocacy, communication, arts and media, creating a network that is research-informed, but also action-oriented. Importantly, we will map existing models of East African disability advocacy, help document emergent ones, and capture lived experiences in this area. These will then be put into conversation with existing knowledge of disability advocacy research to advance knowledge. Further, we will share practices and strengthen the collective voice, to create a visibility circular dynamic to create change.
We will do this through the following activities:
1. A four-day Festival of Disability Advocacy featuring capacity building and knowledge exchange workshops to connect international partners with grassroots disability activists in East Africa. Held in March 2023, Dar es Salaam, Tanzania.
2. A programme of online knowledge exchange and networking events led by disability activists, academics, international campaigning organisations, and existing disability networks.
3. The development of a series of advocacy campaigns, led by youth disability activists with support from the network, that advance disability rights and challenge stigma in East Africa.
4. Informed by the previous activities, the development of an accessible website of training materials, case studies and campaigning toolkits that can be used by disability activists across the world.
5. The establishment of an interdisciplinary and international network for the study and practice of disability advocacy.
These activities will promote cross-cultural exchange and partnership between disability advocates, academics and other key stakeholders. Thus while the initial focus is on the East Africa region, through the networking events and campaigns we will share knowledge, approaches and experience and connect these to broader global networks.
We are working with with ADD (sub-contractor), and partnered with the International Foundation for Electoral Systems [IFES], Youth for Road Safety [YOURS], and Humanity and Inclusion; and have established links with several other related stakeholders. All of these stakeholders are deeply engaged with grassroots disability advocacy and capacity building in East Africa, and come with their own outstanding networks of NGOs and policymakers at the global level. They therefore provide excellent pathways to impact at both regional and global levels, which will benefit both the disabled young people we are working with, and our network of academics.
Through networking, we will fuse academic research with practice in the fields of disability studies, political science, policy, education, advocacy, communication, arts and media, creating a network that is research-informed, but also action-oriented. Importantly, we will map existing models of East African disability advocacy, help document emergent ones, and capture lived experiences in this area. These will then be put into conversation with existing knowledge of disability advocacy research to advance knowledge. Further, we will share practices and strengthen the collective voice, to create a visibility circular dynamic to create change.
We will do this through the following activities:
1. A four-day Festival of Disability Advocacy featuring capacity building and knowledge exchange workshops to connect international partners with grassroots disability activists in East Africa. Held in March 2023, Dar es Salaam, Tanzania.
2. A programme of online knowledge exchange and networking events led by disability activists, academics, international campaigning organisations, and existing disability networks.
3. The development of a series of advocacy campaigns, led by youth disability activists with support from the network, that advance disability rights and challenge stigma in East Africa.
4. Informed by the previous activities, the development of an accessible website of training materials, case studies and campaigning toolkits that can be used by disability activists across the world.
5. The establishment of an interdisciplinary and international network for the study and practice of disability advocacy.
These activities will promote cross-cultural exchange and partnership between disability advocates, academics and other key stakeholders. Thus while the initial focus is on the East Africa region, through the networking events and campaigns we will share knowledge, approaches and experience and connect these to broader global networks.
We are working with with ADD (sub-contractor), and partnered with the International Foundation for Electoral Systems [IFES], Youth for Road Safety [YOURS], and Humanity and Inclusion; and have established links with several other related stakeholders. All of these stakeholders are deeply engaged with grassroots disability advocacy and capacity building in East Africa, and come with their own outstanding networks of NGOs and policymakers at the global level. They therefore provide excellent pathways to impact at both regional and global levels, which will benefit both the disabled young people we are working with, and our network of academics.
Organisations
- Bournemouth University (Lead Research Organisation)
- Tanzania Media Women's Association (Collaboration)
- Franklin and Marshall College (Collaboration)
- Internews (Collaboration)
- Youth for Road Safety (Project Partner)
- International Fdn for Electoral Systems (Project Partner)
- Handicap International (Project Partner)
Publications
| Title | Advocacy Music Videos |
| Description | As part of our supported disability advocacy campaign run by Eva Masanilo, two music videos were produced. These raise awareness of disability issues, aiming to reduce stigma and prejudice. Video 1 (Tunaweza): https://www.youtube.com/watch?v=Z5eu2KCfe40 Video 2 (Usinifiche): https://www.youtube.com/watch?v=wUZBkgzm1l4 |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2023 |
| Impact | The songs were played on local radios and Eva interviewed (e.g. Mtawala Radio). This reached regional listeners around Dar Es Salaam. They were also distributed through the project's whatsapp groups and received excellent feedback about highlighting and combatting disability stigma. Furthermore, both music videos were played to local bus drivers, who pledged to spread the word amongst their colleagues with the aim to sensitise bus drivers towards disability issues and thus prevent discriminatory behaviours o public transport. |
| URL | https://www.youtube.com/watch?v=Z5eu2KCfe40 |
| Description | While this is a networking grant that did not collect primary data leading to 'key findings' in the traditional sense of the word, it did overlap and intersect with ongoing work we are doing in this area. For example, Dr Catalin Brylla's work on Documentary and Stereotypes (2023) studies how social stigma and prejudice can be reduced through factual media, including documentaries, news, reality TV, advertisements and social media videos. It centres around the intersectionality of disability, gender and ethnicity. The placing of these social identities within the context of interventional research and media advocacy, has been significantly informed by the YDAR project. Therefore, the book is intended for researchers and media makers who want to increase social inclusion and diversity through strategic on-screen representations. Using models from social psychology, media studies and cultural studies, it explains how harmful social boundaries can be reduced in relation to ethnicity, culture, age, disability, gender, sexual orientation, religion and many other social categories. The first part explains the function of stereotypes in social perception and cognition, whether we meet a person in real life or watch a TV documentary. The second part establishes a classification system for stigmatising media stereotypes, and it proposes a methodology to analyse these in narrative and audio-visual representations. The third part introduces a framework of methods to reduce stigmatising stereotypes and foster social inclusion. These are based on experiencing the perspective of screen characters and the strategic intersection of multiple social identities. Second, in a book chapter mentioned in the publications section, we formulate a conceptual framework for studying the 'communicative interfaces' established through the work of YDAR (Youth Disability Advocacy and Research Network) and TAMWA (Tanzania Media Women's Association). 'Communicative interface' denotes a nexus of contact and change through connection and interaction between different social groups, which results in the bidirectional production, consumption and exchange of information. Being prerequisites for positive social change, communicative interfaces have been used to challenge rigid, binary structures of identity and belonging, such as ability-disability, European-African, privileged-disadvantaged, heard- silenced voices, and men-women. Finally, there findings from the practical implementation of advocacy campaigns. In this project we piloted a new form of participatory grant making (PGM), that cedes decisionmaking power about advocacy funding- including the strategy and criteria behind those decisions -to the very communities that funders aim to serve. This was done through the micro-grants that we had allocated for advocacy campaigns to be led by young persons with a disability (YWD). This pilot led to important findings that we think can shape and improve current grant making models in the advocacy field (and potentially beyond). These include: - The PGM model was very well received by YWD who reported much greater investment in the application and assessment process, and who gained new skills in grantmaking, decision making and policymaking. It also meant that the advocacy campaigns they pursued truly reflected the needs and demands of YWD. - While the model is unique in how it transfers power to those communities that funders aim to serve, we also found that in our case, the YWD still requested additional structure, mentorship and training, particularly for the for grantees. We aim to pilot this model in more contexts through follow-on funding. |
| Exploitation Route | Until now, in the advocacy field, most decisions about who receives funding and what it is used for have been made by donors / funders and their agents. Often, this means grant decision-making by people who are different to, and at some distance from, the communities the funds are meant to benefit and the activists doing the frontline work. This means that the power over decision-making and resources does not lie with the people most affected by their use. We believe that PGM has excellent potential for a range of funders and projects that have a grant making process. We believe this model is particularly effective in developing equitable partnerships and closing the power relations gap between Global North and Global South communities, and other forms of marginalisation such as disability, gender and age. |
| Sectors | Communities and Social Services/Policy Education Government Democracy and Justice |
| URL | https://www.youth-disability.org |
| Description | While the core aims of this project are about networking and capacity building over the long term - with long term impacts - there have been some notable impacts during the course of the first year of the project. These are documented in Researchfish but they include: - Influencing a Government of Tanzania review into disability policy, including a new 3 billion TZS investment in education facilities for persons with a disability. - The successful launch of a research and advocacy network that brings together practitioners and academics from across two continents and is leading to many benefits for members. For example, through the network a member was accepted to participate in the Barack Obama Young African Leaders Initiative (YALI). - A young person with disability-led advocacy campaign (YWD) centred on the story of one person with disability's situation which, through the use of video and social media, caught the attention of the government in Tanzania. Witnessing the widespread dissemination of the story across various social media channels, the government swiftly intervened and provided the necessary support to address her needs. This remarkable example underscores the impactful role that social media can play in amplifying voices, rallying support, and effecting tangible change, particularly in addressing the urgent needs of marginalized communities such as individuals with disabilities. - Young disabled advocate (Eva) who campaigns through the composed inclusive awareness songs and community outreach events and has minimized stigma associated with PWDs especially from public transport workers. Through her work, she has made bus drivers and conductors from obstacles to disability accessibility into disability ambassadors. Drivers now speak positively about people with disabilities. Through her increased visibility through the project, Eva is now well known as a popular role model in her community. She has used her influence to advocate to parents of disabled children to educate them. - Through the project, two interns at Action for Disability and Development (ADD) went on to join a start-up OPD and helped to formalise the organisation, establish its leadership structure, systems and policies. - Young disabled activists have demonstrated increased confidence, advocacy, safeguarding, teamwork (negotiation and collective decision-making skills), leadership, employability and time management skills. |
| First Year Of Impact | 2023 |
| Sector | Communities and Social Services/Policy,Education,Healthcare,Government, Democracy and Justice,Transport |
| Impact Types | Societal Economic Policy & public services |
| Description | Contributing to a review of 2004 National Policy of Disability by the government of Tanzania |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | We have increased the voice of disabled people in the decision making process. At our Festival of Disability advocacy held in Tanzania, Mr Rasheed Maftah, Director, Disability Unit, Prime Minister's Office explicitly called on our network to use their newly acquired skills in advocacy (gained through this project) to shape the ongoing review of the 2004 National Policy of Disability by the government of Tanzania. |
| URL | https://www.youth-disability.org/youth-disability-in-tanzania/ |
| Description | Digital Media Self-Advocacy for Disabled People |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to new or improved professional practice |
| URL | https://www.youth-disability.org/campaign-digital-advocacy-for-youth-with-disabilities/ |
| Description | Influencing the allocation of resources for public infrastructure for persons with disability. |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | As a result of our policy work and the attendance of Mr Rasheed Maftah, Director, Disability Unit, Prime Minister's Office at our Festival in Dar es Salaam in April 2023 (where he gave the keynote address), the government of Tanzania invested a further 3bn TZS (£1m) for the construction of special colleges for persons with disability. |
| URL | https://dailynews.co.tz/govt-releases-3bn-for-construction-of-special-colleges/ |
| Description | Tanzanian Bus Driver Practices with Disabled Passengers |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to new or improved professional practice |
| URL | https://www.youth-disability.org/campaign-tackling-negative-attitudes-towards-people-with-disabiliti... |
| Description | Media Engagement for Wellbeing in the Sight Loss Community: A Preliminary Model for Research and Intervention |
| Amount | £10,000 (GBP) |
| Funding ID | SRG2223\231062 |
| Organisation | The British Academy |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 02/2024 |
| End | 10/2025 |
| Title | Participatory Grantmaking |
| Description | Until now, most decisions about who receives funding and what it is used for have been made by donors / funders and their agents. Often, this means grant decision-making by people who are different to, and at some distance from, the communities the funds are meant to benefit and the activists doing the frontline work. This means that the power over decision-making and resources does not lie with the people most affected by their use. This donor/funder and agent control has meant that funding systems have often been designed mostly to meet their needs, rather than the communities and activists they are meant to help. For example, application processes can be complex, demanding and force competition, those who are rejected have often wasted a lot of precious time, and requirements often exclude small and informal groups etc. Similar problems apply to reporting, where donors might require detailed written accounting for where the money has gone in ways that take up much time and money and foster responsiveness more to funders than to the communities the fund are meant to benefit. All this can be especially true for most marginalised groups who need the support the most. Participatory grantmaking is an approach that involves the communities that the funders aim to serve in some or all stages of the grantmaking process - from developing the strategy and criteria for the funds, to the decision making and reporting. Fundamentally, it is an approach that seeks to address the power dynamics inherent in philanthropy by moving power from (fund-holding) foundation staff to the people most affected by the issues, or at least sharing it. We have not invented this method of grant making, but we believe we are leading it in the allocation of research council micro grants that were part of our project. Here, we gave young disabled people power over the allocation of micro grants at all levels of the grant making, assessment and implementation stages. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Participants in our participatory grantmaking pilot reported much greater engagement with the process of applying for grants. Many chose to be on the funding committee and learned from shaping the calls and assessing applications. And crucially, the projects that emanated from this process were truly led by the needs of young disabled people in East Africa. |
| URL | https://www.youth-disability.org/participatory-grant-making-and-advocacy-by-young-disabled-activists... |
| Description | Conceptualising Media Advocacy for Young People in Tanzania |
| Organisation | Tanzania Media Women's Association |
| Country | Tanzania, United Republic of |
| Sector | Charity/Non Profit |
| PI Contribution | We provided TAMWA with the opportunity to present their advocacy work at the festival in Dar es Salaam. We also enabled a collaboration on co-authoring a chapter (Young Disabled People as Frontier Africans - Activism through Media Engagement) for the edited volume "Communications and Social Change in the 21st Century. New Perspectives from Africa" (forthcoming). |
| Collaborator Contribution | TAMWA presented their work at the festival and provided significant insights into mobilising media stakeholders to responsibly cover stories about disabled people. They also co-authored the book chapter "Young Disabled People as Frontier Africans - Activism through Media Engagement" for the mentioned edited collection. |
| Impact | Book chapter: "Young Disabled People as Frontier Africans - Activism through Media Engagement" in edited collection "Communications and Social Change in the 21st Century. New Perspectives from Africa". The chapter proposes a new framework for sustainable media advocacy projects. It provided the opportunity for two authors from different cultural and social context to exchange ideas and find common research grounds. There will also be further collaborations (tbc). |
| Start Year | 2023 |
| Description | Disability Advocacy in the Kenyan Media Industry |
| Organisation | Internews |
| Country | United States |
| Sector | Charity/Non Profit |
| PI Contribution | Conceptualising training toolkits for capacity building workshops, targeting media professionals with the aim to improve social attitudes towards disabilities through strategic media representations. |
| Collaborator Contribution | Facilitating access to interviewing and focus group participants from the Kenyan media industry and disability community. |
| Impact | The partnership is ongoing. We are planning a week of knowledge exchange and capacity building workshops in Nairobi in 2025, after we have conducted interviews and focus group discussions with stakeholders. |
| Start Year | 2024 |
| Description | Oral History of People with Disabilities |
| Organisation | Franklin and Marshall College |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | We have provided contacts of disabled people to be interviewed. We provided know-how in visual anthropology methods and media representation. We co-designed consent forms and participant info sheets. |
| Collaborator Contribution | They have recorded interviews with 12 participants and thus produced 12 short films. |
| Impact | This collaboration crosses media studies, disability studies, Global South studies and political activism. It is resulting in 12 character portraits of the lived experiences of disabled people. These also feature the leaders of the campaigns supported by the project. The outcome is not only the videos (which will be uploaded on the project's website), but also the contact between US students and disabled people form the Global South, fostering inclusion and stigma reduction across geographical and cultural borders. |
| Start Year | 2023 |
| Description | Conference: Towards East and Central African models of disability advocacy and social change |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This is a full-day conference for academics and practitioners in the fields of disability advocacy, featuring presentations and expert panels from the academic, NGO and advocacy sectors. 'Speed dating' sessions encourage cross-pollination of insights, best practice and knowledge. The objectives are to exchange knowledge on (1) established models of disability advocacy and their critiques, (2) models of disability advocacy emerging from the 'Global South', (3) media, disability and (dis)empowerment, and (4) a new international network of disability advocacy scholars, activists and practitioners. Outcomes from the event include new research collaborations between UK and East-African scholars. We also developed and launched a new network: Youth Disability Advocacy and Research network: YDAR. This has already gained over 250 members from across the world |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.youth-disability.org/festival-day-3-conference/ |
| Description | Festival of disability advocacy |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | A four-day Festival of Disability Advocacy featuring capacity building and knowledge exchange workshops to connect international partners with grassroots disability activists in East Africa. Held in April 2023, Dar es Salaam, Tanzania. The objectives included to exchange knowledge on (1) local, national and global dimensions of disability advocacy and activism, (2) how digital tools can be employed as catalysts for societal change, (3) conceptualising and planning campaign strategies and theories of change, and (4) toolkits for disability advocacy and empowerment. Over 200 people applied to attend the event (with a capacity of 60) and over the 4 days 79 people attended. This event had direct benefits for the youth people with disabilities who attended, who were equipped with the skills to be able to better self-advocate for change. The results are reported in the advocacy campaigns that they have now led, and new employment opportunities they have taken. The minister for Labour, Youth, Employment and Persons with Disabilities attended the event and invited participants to input into their new policy agenda for persons with disabilities. National media also attended and the event was featured in TV, radio and press. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.youth-disability.org/festival-day-1-tools-for-change/ |
| Description | Representation of Disability in East Africa (Franklin and Marshall College) |
| 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 | 35 undergraduate US students attended this workshop, which aimed at equipping them with skills of how to responsibly interact, interview and represent disabled people from East Africa. Their awareness of issues of inclusion, cultural sensitivity and research positionality was raised. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Research Method Innovation:Documentary Making as Research Tool in Disability (Spring Institute) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | 25 people taking part in the Spring Institute's annual seminar series. The idea of the Spring Institute is to create a community of scholars around the topic of disability. It is aimed at PhD students , ECRS and those mid- and senior career researchers who wish to enter the field of disability-related research. To this end, scholars (including myself) talk about innovative research methods and theories applied to disability research. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://spring-institute.com/program-and-speakers-2024/ |
| Description | YDAR Webinar Series |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | A programme of 90 minute online knowledge exchange and networking events led by disability activists, academics, international campaigning organisations, and disability networks. The objectives of the webinar series are to: (1) expand and deepen engagement with the network, (2) create opportunities for academics and practitioners to share knowledge, (3) promote cross-cultural exchange and partnership between disability advocates at the global level. Launched in June 2023, we have organised over 20 webinars so far, and continue to host one every month beyond the life of the project. Typical audience reach is 50-80, primarily made up of disability advocates from across East and Central Africa. |
| Year(s) Of Engagement Activity | 2023,2024 |
| URL | http://www.youth-disability.org |
| Description | YDAR WhatsApp group |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | A WhatsApp group of Youth Disability Advocacy and Research (YDAR) members that will sustain beyond the life of the funded project. Approximately 90 members from East and Central Africa. Has proven impactful in forging new relationships between disability activists, for sharing job and funding opportunities, and showcasing events. Successful applications to international scholarships and training programmes by East African activists have directly resulted from information shared on the group. |
| Year(s) Of Engagement Activity | 2023,2024 |
| Description | YDAR website |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | An accessible website of events, training materials, case studies and campaigning toolkits showcasing existing and new resources from project partners relevant to youth, disability, and advocacy that can be used by disability activists across the world. Regularly used by disability activists to register for our webinar series, access our training materials and toolkits. Disability studies scholars also regularly access the academic resources section of the website. Analytics show that it has reached over 13,000 users from across Europe, North America, East and Central Africa, Asia and Australasia. |
| Year(s) Of Engagement Activity | 2023,2024 |
| URL | https://www.youth-disability.org |
| Description | Zero Conference |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | Invited presentation at panel "Using Data to Create Policy Change" attended by roughly 200 disability inclusion leaders (advocates, policy-makers, private sector accessibility champions, etc.); Zero Conference is an invitation-only event and the world's largest disability inclusion summit. Impact included advising organizations on implementation of narrative evidence systems. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.youtube.com/watch?v=te4627zk4kE&t=20s |