Problems and Purpose 

Cultural beliefs and negative attitudes towards people with disabilities (PWDs) in Uganda make it difficult for them to participate in socio-political life. This is especially true for youth living with disabilities (YWDs), many who also experience gender-based violence and discrimination (Human Rights Watch, 2010). Since the formation of the disability movement in Uganda in 1960, particular issues facing YWDs have been overlooked. Worse still, within the mainstream youth movement, the exclusion of YWDs is especially pronounced. 

As a result, YWDs are rarely given the opportunity to stand up against discrimination and injustice in a supportive social structure. Likewise, the broader organizational environment is not fully supportive of bringing YWDs on board as agents of change. YWDs are, therefore, left out of decision-making processes that could improve their quality of life. 

In 2003, to address these challenges, the National Union of Disabled Persons of Uganda (NUDIPU) organized a national conference for youth with disabilities, with one result being the formation of a youth committee: NUDIPU-Youth. The group has since worked towards enhancing the participation of YWDs in the Ugandan disability movement, as well as in government and civil society organization (CSO) programs such as employment, youth livelihood programs, women’s entrepreneurship, special grants for persons with disabilities, and community driven development. 

To this end, in 2016, a NUDIPU-Youth project aimed at engaging 1,000 young males and females with disabilities was launched to influence decisions and promote equal participation in programs at both national and district level, and across all regions. The direct involvement of YWDs would provide a platform for collective demands for more inclusive development at local and national levels through the Department of Youth and Children Affairs in the Ministry of Gender, Labor, and Social Development (GLSD).

Background History and Context

In 2016, NUDIPU conducted a survey in Mpigi and Mbarara districts to establish the level of inclusion of YWDs in government poverty reduction programs (i.e., Operation Wealth Creation, Youth Livelihood, and Uganda Women Entrepreneurship Program). Based on survey results, 76% of the YWDs interviewed had attained at most a primary-level education, whereas the non-disabled youth were better-educated and more competitive (Ssenoga, 2016). Also, YWDs were not aware of the different programs existing within their communities and, thus, were not accessing them (Yedo, 2016, p. 33). This represented a challenge for NUDIPU to ensure that it capacitates YWDs through its advocacy in order to create openings within the mainstream youth movement, in the community, and in organizations of persons with disabilities (OPDs).

Prior to the 2016 general elections, the broader Ugandan youth movement and CSOs launched the National Youth Manifesto 2016–2021 as a youth agenda with key demands directed at various political leaders. However, YWDs were only mentioned in one of the demands, despite their needs cutting across all five priority areas: health, participation, education, unemployment, and sports and culture (YCED, nd.) Many of the CSO’s youth-focused programming as well as government programs for non-disabled youth have also side-lined the YWD movement, often inviting just one or two representatives for meetings. 

Facing exclusion from both the youth movement and the disability movement, NUDIPU-Youth sought to support YWDs with spaces to meaningfully participate. In doing so, it would be crucial to ensure a balance between the types of disabilities. 

Origanizing, Supporting, and Funding Entities

NUDIPU-Youth is an umbrella organisation of YWDs initiated in 2003. It is part of the NUDIPU umbrella organisation and was established to build capacity and tap the potential of YWDs in Uganda. That year, NUDIPU-Youth partnered with the Norwegian Association of the Disabled (NAD) and since 2011, with the Danish Association of Youth with Disabilities (DAYWD), who both funded projects aimed at to build the capacity of YWDs in Uganda and promote their inclusion. Building on this and subsequent YWD-focused projects, the Empowerment of Youth with Disabilities in Uganda 2016–2019 project has benefitted from ongoing funding by DAYWD 

Participant Recruitment and Selection

Within NUDIPU-Youth

Participants were selected through nine OPDs representing different disability categories and based on their leadership capacity. Each OPD was asked to invite eight YWDs to participate in NUDIPU-Youth’s General Assembly, helping the OPDs to understand the work of NUDIPU-Youth and to commit support for the mobilization. Emphasis was put on a gender and disability balance, and 80 delegates aged 16–30 were selected. Marginalized categories of disabilities were given priority (e.g., deaf-blind, albino). 

These delegates then elected 11 members to form the NUDIPU Youth Committee, composed of four regional representatives, youth with different disability categories (e.g., dwarfism, epilepsy, cerebral palsy, and deaf-blind) and one female representative. The Committee has two ex-officio members, one representing the government’s National Youth Council and the other a youth representative on NUDIPU’s Board of Directors. This composition has fostered support from both the disability movement and the government its promotion of inclusion. The Committee meets on a quarterly basis to receive reports and make recommendations on issues pertaining to YWDs; it monitors and supervises all youth activities at the NUDIPU Secretariat and community levels. It also monitors youth involvement OPDs and lobbies stakeholders to include YWD issues in their programs.  

In communities

Home visits helped identify role models who used their own life experiences to mobilize, encourage, and motivate others to be part of the program. This approach was effective, reaching 796 YWDs—including some not reached by previous development programs— who were trained between March 2016 and September 2017. The approach also helped the caretakers, leaders, and community members to understand that YWDs are key in development and must be included at all levels. 

Methods and Tools Used

Several methods were employed to enable the YWDs to actively participate in decision making:

· Advocacy and gender trainings: Ten district-based advocacy trainings were conducted, focused on life skills, leadership, advocacy, volunteerism, communication, and fundraising among others. 

· Media advocacy: NUDIPU-Youth used press releases, press conferences, and public events to make their demands.

· Dialogue meetings: Sixteen dialogue meetings were conducted that targeted decision makers, parents, caretakers, community volunteers, police, and opinion leaders in the four districts and at the national level. 

· Deliberative meetings: Partners and network members were convened to deliberate on mainstreaming inclusionary measures in their respective organizations.

What Went On: Process, Interaction, and Participation

Advocacy and gender trainings

Ten trainings were conducted in the four districts—two in Lira and Sironko districts and three in Mbarara and Mpigi—bringing together a total of 500 YWDs. Young women were separated from the men to discuss gender and advocacy issues, creating an open and conducive environment for the participants to freely share and learn about advocacy around gender equality and development issues. Through a mix of presentations, role plays, and open discussions, facilitators ensured that all participants had equal chance to actively contribute ideas, opinions, and experiences.

Further, the 80 delegates from NUDIPU-Youth’s General Assembly and 16 non-disabled youth underwent a 4-day intensive training before the elections on leadership, fundraising, volunteerism, gender mainstreaming, advocacy, economic empowerment, sexual reproductive health, and civic education skills. This was done to prepare them to understand that YWDs have the potential to take up leadership and community leaders to be mindful of inclusion of different disability categories. 

Media and public advocacy

A total of 72 journalists and reporters from various national media houses were trained to more effectively report on disability issues. These actors were thus more responsive and effectively reported YWDs’ key advocacy issues on accessibility in health facilities and in education, on employment, as well as on unequal participation vis-à-vis non-disabled youth. YWDs put forth their issues through press releases, demonstrations, and press conferences and used public events such as International Youth Day celebrations to attract the attention of the President and other decision makers towards the inclusion of YWDs. 

Radio and TV talk shows featuring YWDs were used to sensitizing the public about their needs and potentials and the importance to include them in government and CSO programs.

National and district-level dialogue meetings

Four national dialogue meetings were held between 2016 and 2017 bringing together YWDs spokespersons, youth Members of Parliament and other legislators, non-disabled youth leaders, Councilors, and youth-focused CSOs. YWDs themselves presented the needs and realities of living with disabilities, along with an inclusive guide that gave insight into how they have been marginalized. Interactions between YWDs and authorities enabled stakeholders without disabilities to understand the importance of involving YWDs and to recognize gaps in how budgeting processes had been contributing to the exclusion of YWDs. 

In district-level dialogues, facilitators used a number of tools to convey the message to stakeholders: demonstration through role plays, group discussions, brainstorming, and use of volunteer role models to share their experiences in the meetings. This fostered open discussions, learning, and understanding that yielded commitments and favorable attitudes from decision makers with regards to the inclusion and mainstreaming of YWDs.

Deliberative partner network meetings

Three partnership network meetings were held at 6-month intervals and included the Parliamentary Forum on Youth Affairs, the Equal Opportunities Commission, the Commissioner for Youth and Children (Ministry of Gender, Labour, and Social Development), youth-led CSOs, and other development partners. Nearly 50 CSOs and government agencies deliberated on the development of inclusive guides for YWDs in their respective organizations as a means for YWD inclusion. 

Consultations were continued on an ongoing basis following the meetings to ensure implementation. Further, the NUDIPU Youth Committee, along with the Project Management Committee and community volunteers, conducted routine monitoring field visits with stakeholders in the four districts.

To complement these efforts, eight meetings were held with executives and chairpersons of national OPDs to lobby for mechanisms for YWDs inclusion in their organizations (e.g., a youth policy, youth project, or youth wings at the community level). Similarly, a meeting with the Ministry of Youth and Children Affairs was aimed at lobbying for the mainstreaming of YWDs in their structures and activities. This included YWD representation on National Youth Councils, from the village to national levels, for government representation on the Project Management Committee of NUDIPU, which would enable YWDs to display their potentials and capabilities. 

Influence, Outcomes, and Effects

  The initiative led to many outcomes, not only affecting YWDs’ lives directly, but also building momentum around their inclusion in development initiatives and social priorities in Uganda. 

Enhanced YWD rights awareness, self-esteem, and voice

In the spaces where YWDs engaged, their participation enabled them to recognize the importance of identifying problems through sharing experiences and finding their own solutions. Participants clearly understood that they are the resource people with the potential and power to demand and advocate for their rights. For example, exchange learning visits between YWDs from different districts revealed that the issues they face are common across jurisdictions and there is value in learning from each other’s experiences to replicate best practices in their respective communities. 

Similarly, peer learning was encouraged during the advocacy trainings, providing YWDs with an opportunity to freely discuss and interact. Through dialogue with others, many YWDs became hopeful to go back to school or realized that their disability was less of a limitation than for others living with different disabilities (e.g., in terms of discrimination around marriage or in romantic relationships). 

Sessions for young women with disabilities motivated them to speak up in the absence of the young men with disabilities. As they gained self-esteem, the women began debating with the men without the fear or hesitation they previously felt. 

Increased engagement of YWDs in economic activity and development

Following the trainings, many YWDs came to understand their rights and recognize opportunities available to them in their communities. Increased confidence led many to look for places to intern and volunteer in OPDs and in other CSOs or government organizations. Some participants secured jobs, hence promoting independent living within their communities. 

By early 2018, 28 YWDs were engaged in the workforce, either as volunteers with different national or district-level organizations, with 12 being formally employed, and six receiving further skills training in Uganda and abroad (Iceland, Denmark, UK). Ten YWDs were working private businesses and livelihood activities to improve their standards of living.

Increased access to rights and resources

As an example, one male youth with cerebral palsy used his advocacy skills to address a grievance about land that had been denied to him by family members due to his disability. He called a family and community meeting to claim his right and ultimately won the case. He is since practicing farming and other income-generating activities as an independent person. 

As perception of YWDs began to shift in communities, parents committed to keep their children—in particular girls with disabilities—in school, protecting their right to education and further increasing their likelihood of accessing resources in the future. A similar shift, many YWDs are seeking information from NUDIPU about how to join university through affirmative action.

YWDs claiming space in organizations and government bodies

As a result of deliberations and discussions hosted by NUDIPU-Youth, five CSOs have mainstreamed YWDs in their activities, hence increasing awareness about disability needs and visibility of YWDs among the constituencies of mainstream organizations.

Lobbying OPDs led to the development of five strong Youth Wings as well as increased representation of YWDs on boards of directors. This also opened space for YWDs to volunteer in their organizations.

Engagement with government led to securing a space for one representative on the Committee for National Youth Council (a government body), as well as a representative from the Ministry of Gender to sit on the NUDIPU Project Management Committee. This resulted in securing space from the government side to have four YWDs participate in the 2017 Commonwealth Youth Ministers forum. 

Political engagement and representation of YWDs

YWDs who benefited from the leadership and capacity building trainings took over leadership positions as Councilors representing persons with disabilities. This has translated into more accessible service delivery to YWDs in the community as a result of their influence.

Policy change and political inclusion

NUDIPU-Youth used made deliberate efforts to reach out to marginalized youth, guardians, and policy makers through community dialogue meetings, sub-county sensitization meetings, and networks of community volunteer ambassadors. Their advocacy for the inclusion of YWDs led to a number of changes and development in district- and national-level policies.

First, the national dialogues secured commitments by policymakers to include YWDs in public planning processes. For example, four districts developed District Operation Plans (DOPs) that are YWDs and PWDs sensitive and have supported the work of CSOs and OPDs working towards the inclusion of YWDs in their organizations and programming. 

The YWDs’ advocacy also led to the revision of the National Youth Policy guideline relating to the Youth Livelihood Fund, which now provides for inclusion of YWDs in the grant (MGLSD, 2013, p. 11). At the district level, community development officers and district chairpersons now enforce the implementation of the policy guideline in all programs.

The initiative worked with 21 CSOs to generate an inclusive guide to mainstreaming all categories of disabilities in national and district level programs, as well as in CSOs. As a result, six youth-led CSOs have developed mainstreaming mechanisms for YWDs in their programming, strategic plans, governance structures, or volunteer policies.

Finally, as a result of the deliberations, youth are increasingly invited into policy discussions and forums where decisions on disability matters are being made and increasingly solicited for input on these issues.

Analysis and Lessons Learned 

Many lessons were drawn from this experience, including the following:

Self-reflection as a step towards empowerment

In most activities, YWDs engaged in reflection and meditation sessions, which gave them an opportunity to think through both difficult and positive experience they have had, as well as turning points. This approach helped YWDs to realize their weaknesses and strengths as leaders, to transform their self-perception as agents of change, and to make commitments towards the changes they were going to make. This self-reflection was key to empowering YWDs, whose marginalization in their communities clouded their self-perception as leaders. 

Community outreach and engagement for collective accountability

Community outreach and family visits were effective means to involve many community stakeholders, including parents, councilors of persons with disabilities, local and district councils, and CSOs. These intermediaries were effective in reaching the most marginalized YWDs (e.g., those living in remote, mountainous areas). All parties engaged were responsible for identifying a YWD within their community, for supporting their participation in the project, and for following up and reporting on their well-being. This allowed many girls with disabilities, whose parents pulled them out of schools to give boys access to study, to get involved. These girls learned their rights and, with support from different local leaders, demanded to go back to school. Engaging multiple stakeholders and holding them accountable to a YWD created a sense of collective responsibility for YWDs at the community level.

YWD volunteers changing community perceptions of disability

The establishment of community volunteer networks, connecting villages to the national level, broadened the reach and changed local perceptions of people with disabilities. As YWDs began volunteering as vocal youth leaders in their communities, local councils, opinion leaders, religious leaders, and parents witnessed YWDs displaying new and different behaviors. This changed their mindset and enhanced community support for the initiative, as people recognized that YWDs can play a leadership role and contribute to decision making. 

Media involvement creating opportunities for YWDs

Media involvement was key in effective advocacy of the project because it enabled the message to be spread far and loud. Most media campaigns run through local radio stations yielded positive results, especially those targeted to district-level decision makers. Media involvement meant that the project objectives could be clearly understood by community members, further enhancing their support and participation. As YWDs began exercising their voice, communities responded by enabling many of them to volunteer or by offering support for the initiative. 

Challenges

Some of the challenges encountered include: 

· Ongoing resistance to inclusion in CSOs and OPDs. Despite ongoing advocacy by YWDs, a number of OPDs continue to resist developing mechanisms for YWDs inclusion and are reluctant to fundraise for projects tailored towards youth empowerment. While over 50% of OPDs have created a space through a youth policy and/or board representation, many CSOs are is still slow to respond to issues of YWDs inclusion. Lobbying and engagement with these CSOs and OPDs is ongoing in an effort to close this gap.

· Limited accessibility. Participation of YWDs in programs was often limited by the lack of assistive devices such as wheelchairs or canes and insufficient access to information. This was mitigated by organizing activities targeting the most rural communities and hiring local language translators and sign language interpreters.

· Negative attitudes and discrimination. At the community level, stigma and isolation is highly pronounced. To change this, NUDIPU-Youth established networks of community volunteers, including community leaders in mapping out and sensitizing the public on the challenges, potentials, and the need to empower YWDs in all spheres of life. Through these efforts, some of these mindsets and perceptions are beginning to change, thereby creating a more enabling environment for YWDs to participate meaningfully in political and economic life. 

See Also 

National Union of Disabled Persons of Uganda (NUDIPU)

References

Human Rights Watch. (2010). “As if we weren’t human”: Discrimination and violence against women with disabilities in Northern Uganda. Retrieved from https://www.hrw.org/sites/default/files/reports/uganda0810_brochure_low.pdf 

Ministry of Gender, Labour and Social Development. (2013). Youth livelihood programme: Programme document. Republic of Uganda. Retrieved from http://ylp.mglsd.go.ug/Publications/PROGRAMME%20DOCUMENT.pdf 

Ssenoga, M. (2016). Needs and potentials of youth with disabilities in Mpigi and Mbarara. NUDIPU. Internal document.

Uganda Bureau of Statistics. (2016). National Population and Housing Census 2014: Main report. Republic of Uganda. Retrieved from http://www.ubos.org/onlinefiles/uploads/ubos/NPHC/NPHC%202014%20FINAL%20RESULTS%20REPORT.pdf 

United Nations. (n.d.). Toolkit on disability in Africa: Culture, beliefs and disability. Division for Social Policy Development, Department of Economic and Social Affairs. Retrieved from http://www.un.org/esa/socdev/documents/disability/Toolkit/Cultures-Beliefs-Disability.pdf

Yedo, S. M. (2016). Assessing youth with disability needs and challenges in accessing government programs. Baseline Report. NUDIPU.

Youth Coalition on Electoral Democracy (n.d.). A social contract with young Ugandans: The National Youth Manifesto 2016–2021. Retrieved from https://www.dgf.ug/sites/default/files/dgf_publications/National%20Youth%20Manifesto.pdf

External Links

National Union of Disabled Persons http://nudipu.org/

NUDIPU- Youth (Facebook page) https://www.facebook.com/nudipuyouth/ 

Human Rights Watch https://www.hrw.org

Youth Livelihoods Programme ylp.mglsd.go.ug 

Light for the World https://www.light-for-the-world.org

Uganda Parliamentary Forum on Youth Affairs http://upfya.or.ug/

African Youth Development Link www.aydl.org 

Notes

This case was produced and submitted by a graduate of the Coady International Institute at St. Francis Xavier University with support from J. Landry and R. Garbary.