Persons With Cerebral Palsy Self-Mobilising for Meaningful Participation in Uganda

Persons With Cerebral Palsy Self-Mobilising for Meaningful Participation in Uganda

English

Problems and Purpose

For years, persons with Cerebral Palsy (PWCP) in Uganda have been marginalised both in their communities and in the disability movement, partially due to limited awareness on Cerebral Palsy (CP) as a disability with its own causes and effects. Because PWCP manifest many different forms of functional limitations (e.g., challenges related to walking and/or speech), they tended to be categorised under other disabilities.

In most local communities, people interpreted CP through cultural understandings (e.g., parent’s unfaithfulness, curses, incest) and stigmatised their families. Many families hid children with CP from the public, both to protect their family image and to avoid exclusion from broader community activities. Over time, this contributed to high illiteracy rates among PWCP and exclusion from capacity-building opportunities by both civil society and state actors, further limiting their participation in governance. PWCP have generally been invisible in all community activities, including those targeting persons with other disabilities, exemplifying the Uganda National Bureau of Statistics’ understanding of disability: “any physical or mental conditions that limit full participation of an individual in family and community activities” (Uganda National Bureau of Statistics, 2016).

It was thus urgent to mobilize, organize, and empower PWCP to claim their space for inclusion and to realize their right to contribute to development and governance. Raising public awareness was also crucial to change attitudes and prejudice that perpetuated the exclusion of PWCP. To accomplish this, a group of PWCP initially mobilized and empowered their peers, engaged other stakeholders, and conducted media campaigns. However, to realise their rights, sustain these efforts and ensure their full participation in development processes and decisions, PWCP moved to form their own organization: the Uganda National Association of Cerebral Palsy (UNAC).

History

Intersectional discrimination is common to persons with disabilities (PWDs) and constitutes a major barrier to their inclusion and participation in community, despite a legal framework to protect these rights. Article 21 of the Ugandan Constitution (1995) prohibits discrimination against persons with disabilities, and the Uganda Local Governments Act (1997), the Parliamentary Elections Act (2001), and the Movement Act (1997) all aim to increase the representation of PWDs in the public sphere [1]. Uganda is signatory to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The enacted Uganda Persons with Disabilities Act (2006) makes further provisions for the elimination of all forms of discriminations against PWDs and towards equal opportunities. Notwithstanding, PWCP remain excluded in part due to assumptions that their views can be adequately represented by people with other types of disabilities, especially physical ones.

In 2011, a delegation of youth with disabilities from Denmark visited the National Union of Disabled Persons of Uganda (NUDIPU) Youth Committee as part of an exchange visit. The delegation included youth with CP, who noticed that PWCP were not included in any activity or in the organization database in Uganda. This prompted them to initiate a project specifically aimed at mobilizing PWCP in Uganda, requesting in 2011 that NUDIPU-Youth Committee recruit two youth with CP, who would then receive training in leadership and project management in Denmark.

On their return, the youth implemented a 1-year pilot project that raised awareness and mobilized 142 (87 male and 55 female) PWCP in two districts of Central Uganda, Kampala and Wakiso. Another 2-year project expanded the reach to Buikwe and Mukono districts. Despite the success, the fact that PWCP were operating under the umbrella of national disabled peoples’ organization still meant limited control, influence, and dependence which prolonged their marginalization and invisibility. To overcome this, and to address the challenges of exclusion and voicelessness in their communities, PWCP resolved to form and registered their own organization in 2013

Originating Entities and Funding

Spastiker Association Denmark, in collaboration with the Danish Association of the Disabled, funded the projects implemented by PWCP leading to the formation of UNAC. To register under the Uganda Non-Governmental Organizations Board, PWCP largely used their own resources. Their aim was to enhance the visibility of PWCP in their community, to strengthen their advocacy voice for inclusion and participation in their community, and to realise their rights to live a dignified life.

Several funders have since supported UNAC’s initiatives. Disability Rights Fund (DRF) have supported efforts to establish leadership structures of PWCP across Uganda and to strengthen UNAC’s own leadership capacity. The Abilis Foundation has supported the economic empowerment of PWCP through start-up capital, business development, and management training.

Project implementation partnerships have also been developed with Uganda National Action on Physical Disability and Motivation Charitable Trust.

Participant Recruitment and Selection

Formation of UNAC

To mobilize PWCP, two youth with CP were identified from with Kyambogo University Kampala and were trained and empowered to mobilize their peers. They mainly relied on community members to lead them to families believed to have a member with CP who would likely be hidden from the public. Other community members were eventually recruited to support in identifying PWCP from their community. All identified members (PWCP) were then trained on their rights and the difference between CP and other disabilities. From this initial group of members was established an acting committee to monitor and support project implementation.

UNAC activities

UNAC targets PWCP of all ages from all districts of Uganda, though it often focuses on those in project implementation districts. The engagement of PWCP depends on:

  • project location, duration, and available resources;
  • previous participation in UNAC projects, with new areas always prioritised; and
  • the prevalence of CP.

UNAC approaches local leaders to help first disseminate the information to the community and then help in identifying families with PWCP. Parents and caretakers also constitute the primary participants recruited, since most PWCP depend entirely on someone for support.

UNAC also recruits teams of contact persons in each community, including community leaders, parents/caretakers, empowered PWCP, and reputable community members. Their role is to identify new members with CP; coordinate the exchange of information between UNAC, its members, and the community; and to monitor the participation of PWCP in all community activities.

DPOs, civil society organizations, and government departments constitute a secondary member group mobilized by UNAC as allies to support and promote the inclusion of PWCP.

Membership in all categories has increased annually, yet challenges persist in recruiting and mobilizing PWCP, pertaining to negative public attitudes, inaccessibility, poverty, illiteracy rates, age, and neglect.

Methods and Tools Used

Numerous methods were used by PWCP to claim their inclusion and enhance their community participation, including disability rights advocacy training, stakeholder engagement meetings, and media campaigns.

Disability rights advocacy training: This training targeted PWCP and their caretakers, focusing on raising their awareness of their rights and how to protect and promote them.

Stakeholder engagement meetings: These were aimed at both forming allies to support the inclusion of PWCP and to raise awareness.

Media campaigns: These aimed at reaching communities and publics beyond the project operation areas. It entailed press releases, television shows, brochures, charts, and call-in radio talk shows.

Deliberation, Decisions, and Public Interaction

Within UNAC

According to UNAC (2015), the Cerebral Palsy pilot project mobilised a membership of 142 (87 males and 55 females), which increased to 538 (342 males and 196 females) members with Cerebral Palsy mobilized in only 4 districts out of the total 121. Under an interim committee leadership, the mobilized PWCP joined together and established UNAC, which then established leadership structures (i.e., committees) of PWCP in two regions of Uganda (West and Central); they are now in the process of establishing in the East and Northern regions. The structures have played a key role in mobilizing more PWCP in their respective regions and empowering them to claim space in their community.

Within the disability rights advocacy training

Over 15 trainings (each involving 10-20 participants) were conducted for PWCP and their caretakers in Central, Western, and Northern Uganda. The trainings included workshops and follow-up meetings to evaluate changes PWCP experience in their community. The workshops used moderated discussions, often led by a PWCP, to impart knowledge and skills and gather data for documentation. In all workshops, PWCP’s views were primary in all decisions, with parents deliberating on behalf of children and those with severe CP. On matters concerning caretakers, their views were prioritised.

In the first workshop, participants listed and prioritized the most pressing barriers faced by PWCP, including:

  • negative attitudes from community members;
  • low self-esteem amongst PWCP and their family members;
  • physical and information inaccessibility of opportunities in their community;
  • isolation both in their family and in the community;
  • lack of representation in any leadership structure within their community and at the national level;
  • high illiteracy rates; and
  • poverty.

In terms of actions to address these barriers and realize their rights, members agreed to prioritise:

  • Public awareness raising;
  • Leadership training for PWCP;
  • Economic empowerment and
  • Establishing an organization for PWCP.

Within the stakeholder engagement meetings

These engagements were preceded by stakeholders mapping to identify potential allies and align various stakeholders with particular barriers the initiative aimed to address. DPOs, local government departments, and the general community were primary targets. UNAC then arranged individual stakeholder meetings and joint meetings where multiple stakeholders came together to pledge reforms and support to guarantee inclusion of PWCP.

DPOs who targeted a particular category of disability committed to including PWCP in all their activities aimed at the broader disability movement. For some, PWCP became part of their primary targets in all their activities and leadership structures. The results were mixed, as these well-established national organizations had strong influence and reach in their areas of advocacy and operation; yet, their efforts tempted to diverted potential funding and support for PWCP to their organizations.

Local government leaders considered this initiative to be transformative for the entire community. They believed raising community awareness on CP would change people’s attitudes, stereotypes and myths, and reduce stigma around families and PWCP. In Buikwe, each time a government program began, a PWCP contact person was mobilized to guide officials on any accommodations required to ensure their active participation.    

Within media campaigns

Media campaigns aimed at raising the awareness of a broader audience on CP, at mobilizing other PWCP, and at showcasing PWCP’s ability to deliberate on issues of public interest, like national budget allocations. For example, UNAC contributed to a press statement calling upon the State to follow the Uganda Persons with Disability Act (2006) in appropriating funds to special needs education programs [2]. PWCP also contribute press statements regularly on other rights issues and comments on national budget allocations in health, inclusive education, the inclusion of PWCP, and implementation of the UN CRPD.

Within the community

These multiple engagements have also led some PWCP to gain formal representation as elected councillors in local government. As such, they have kept peers informed of all planned activities in their community, they advocate for reasonable accommodation to facilitate their participation, and they influence the local government to improve accessibility of their offices for all persons with disabilities. Since assuming office, some leaders with CP have cited noticeable changes amongst their fellow leaders, including increased patience to allow them more time to speak, receiving copies of Council deliberations, or a sense of changes in attitudes. However, for greater inclusion of PWCP, this attitude change observed within Council still needs to be expanded to reach peers in the community.

Influence, Outcomes, and Effects

The goal of inclusion and active participation of PWCP in the disability movement and in their communities has been partially achieved. As PWCP established their own association, they are now awarded representation both in the disability movement and their local community. While UNAC initiatives have reached fewer than 10 of 121 districts in Uganda, gains in those areas have been significant, and include:

Mobilizing PWCP to contribute to their communities

This initiative inspired PWCP to share their experiences and time to promote participation in their communities. By organizing themselves, PWCP established a platform upon which their knowledge and skills, acquired through living with a disability, was valued and shared to help the public develop interventions to guarantee their participation.

Meaningful inclusion in the disability movement and in communities

PWCP are now meaningfully included in both the disability movement and in many of their communities. There are now two youth with CP in the NUDIPU’s youth committee, including one representing youth with disabilities from central Uganda. UNAC elected a board that includes persons with other forms of disability and other members without disability. Moreover, a former member of the CP committee was elected as a local councillor, representing all PWDs in his community. This has enhanced PWCP’s sense of belonging in their communities. Though still limited, there is growing social acceptance and recognition that PWCP can play a key role in their community.

Confidence building and collective awareness

Each time PWCP are consulted and invited to contribute to debates in their constituencies, or participate in elections, or run for office as candidates, they feel connected and important to their community. Participation in such decision-making processes enhance their sense of ownership over processes and outcomes that benefit the whole community. PWCP now have an increased sense of their ability to act and influence their community, as is evidenced by the increased enthusiasm among PWCP to advocate for the rights of all PWDs.

Heightened public awareness and more equal opportunity

PWCP have effectively sensitised the public about CP and how they can be included in all activities in their community. Some communities can now clearly distinguish the needs of PWCP from other disabilities, which is evident where they are offered more time to speak and write, or where family members are always invited to participate on the behalf of those with severe conditions. This has also reduced stigma towards families of members. A heightened awareness has also prompted responses from authorities and encouraged them to consult PWCP regarding their representation and participation in community activities and governance.

Barrier free community

While it was crucial to address physical and social barriers that hindered the inclusion and participation of PWCP in their communities, addressing cultural beliefs which compounded these barriers and led to the exclusion and stigmatising of the whole family was urgent too. For example, in areas where PWCP projects have been implemented and people are educated around CP, they freely interact with PWCP without unfounded fears of contracting the disability. Stereotypes, such as the assumption that all PWCP are also intellectually, socially, or physically deficient are also less common.  

Representation and voice in the political space

Having PWCP participate in politics by default raises political awareness of politicians and other public office holders of the existing disability legislations that they must respect, protect, and fulfil to guarantee the full participation of all members in the governance of their constituencies. During leadership training in western Uganda, local councillors and leaders with CP testified that they are always allowed space to present the views of their constituencies during debates, thereby increasing the voice of PWCP around those decisions. Another indicator is the increasing presence and influence of politicians who attend activities like International Cerebral Palsy Day, organised by UNAC.

However, in the political arena, partisanship has remained a major challenge to the participation of PWDs in governance. There is a general misconception that all PWDs support the ruling government, which has made inclusion overly political and a source of tension. In some communities, PWDs must affirm their support for the government to be included, while in others, the opposite is true.

Analysis and Lessons Learned

The following lessons can be identified from this experience.

PWCP creating and claiming their own space

The mobilization and empowerment of PWCP was crucial to the above outcomes. This initiative shows that it is very powerful when marginalized people take the lead in activities aimed at claiming their space. Moreover, it is transformative when a group comes together and acquires a sense of their own rights and values. PWCP mobilizing and empowering their peers established acceptance and trust from both their peers, family members, and the general community. This enabled them to first understand that the conditions they manifested was a disability with causes and effects different from other forms of disability; and second, this awareness dispelled stereotypes and stigma attached to PWCP, thus redeeming their political space.

Importance of moving from the individual to the collective

The lack of a united voice of marginalised groups of people often constitutes a key challenge to their inclusion. Most PWCP assumed that they were the only people with that type disability in their community, and perhaps in the world. This was perhaps due to their isolation from the public and misinformation about their disability. As such, many internalized a misrepresented image of themselves. When PWCP started to mobilize and organise themselves into an association, the community accepted that some of their conditions and needs are unique to them and started to respond in favour of inclusion.

Overcoming both physical and attitudinal barriers

In 2006, the UNCRPD was adopted to promote inclusion and active participation of all PWDs in their community. Post-adoption, it is asserted that it is not just one’s disability or physical barriers that determine their level of participation in their community, but also included socially constructed barriers characterised by ignorance, indifference, and fear from community members to interact with persons with disabilities. Working at this attitudinal level was key for UNAC as it sought to have PWCP recognised and included in the governance and life of their communities; that is, it was impossible to advocate for their inclusion without first addressing community attitudes and stereotypes.

The challenge of dependence on external funding

Since 2011, the mobilisation of PWCP has been mostly donor-funded. When PWCP presented their desire to become an independent organization, there was hesitation from some donors who claimed that their partnership agreement would not allow such activities, thinking that it would not directly benefit the community and that PWCP lacked sufficient capacity to manage their own activities. These attitudinal barriers, together with other restrictions related to location, time frames, activities, and objectives were driven by donors and further limited PWCP’s ability to claim space and participate on their own terms.

To guarantee sustainability, UNAC has entered into partnerships with different DPOs to implement joint projects and to write joint funding proposals. This helps ensure that organizations working on similar or related challenges avoid duplicating interventions amidst a shrinking pot of international donor funding. A second strategy is the collection of membership annual subscription fees from all members. While this strategy has great potential, it is complicated by the fact that most members (mostly PWCP) live in poverty and their ability to pay fees is limited.

 

Secondary Sources

Republic of Uganda. (1995). The Constitution of the Republic of Uganda. Kampala: Parliament of the Republic of Uganda. Retrieved from http://www.parliament.go.ug/index.php/documents-and-reports/the-constitu...

Republic of Uganda. (1997). Chapter 243: The Local Governments Act. Kampala: Ministry of Local Government.  Retrieved from  http://molg.go.ug/sites/default/files/LOCAL%20GOVERMENTS%20ACT.pdf

Republic of Uganda. (2001). Parliamentary Elections Act, 2001. Retrieved from https://ulii.org/ug/legislation/act/2001/2001/parliament%20elections%20A...

Republic of Uganda. (1997). Chapter 261: The Movement Act, 1997. Retrieved from https://ulii.org/ug/legislation/consolidated-act/261

Republic of Uganda. (2006). The Persons with Disabilities Act, 2006. Retrieved from http://www.ilo.org/dyn/natlex/docs/ELECTRONIC/88100/100632/F69652940/UGA...

 Ssenkaaba, S. (2017, January 12). Inclusive education: The missing link. The New Vision. Retrieved from https://www.newvision.co.ug/new_vision/news/1443873/inclusive-education-...

Uganda National Association of Cerebral Palsy (UNAC) (2015). UNAC Profile.  Kampala: UNAC.

Uganda National Association of Cerebral Palsy (UNAC) (2015). Western Region Meeting for People with Cerebral Palsy. Kabwohe on 27/November/2015. Unpublished document.

Uganda National Association of Cerebral Palsy (UNAC). (2017). Constitution as amended, 2017. Kampala: UNAC.

Uganda National Bureau of Statistics. (2016). Disability Statistics Measurement in National Population and Housing Census. Kampala Uganda: UBOS.

United Nations. (2006). Convention on the Rights of Persons with Disabilities. Retrieved from  https://www.un.org/development/desa/disabilities/convention-on-the-right...

 

External Links

UNAC leadership training in Lira District Northern Uganda.
http://unacp.org/mobilization-and-leadership-training-in-lira-district/

UNAC commemorate world CP day 2017
http://unacp.org/commemoration-of-world-cerebral-palsy-day-2017-2/

UNAC achievements
http://unacp.org/achievements/

UNICEF Uganda study on children with Disability https://www.unicef.org/uganda/UnicefUganda_CwDsStudy_Annexes_Final_(2).pdf      

UNAC a DRF grantee.
http://disabilityrightsfund.org/grantees/uganda-national-association-of-cerebral-palsy  

A mother and son take disability out of the shadows in Uganda (Motivation’s mother and child support group, funded by UK aid from the Department for International Development).
https://www.gov.uk/government/case-studies/a-mother-and-son-take-disability-out-of-the-shadows-in-uganda

National Budget Framework Paper. FY 2013/14–FY 2017/2018
http://budget.go.ug/budget/sites/default/files/National%20Budget%20docs/National%20Budget%20Framework%20Paper%202013-14.pdf

Notes

[1] The Local Government Act, for example, provides for representation of disabled people at the various Local Council levels.  In addition, Section 37 of the Parliamentary Elections Statute provides for five seats in Parliament for representatives of persons with disabilities.

[2] The Uganda Persons with Disability Act 2006 obliges the government to allocate 10% of the education budget to inclusive and special needs education, while it only spent a mere 0.12% in 2013–-14.

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

 

Case Data

Overview

Specific Topic(s): 

Location

Geolocation: 
Kampala
P. O. Box 8567
256 Kampala
Uganda
UG
Geographical Scope: 

Purpose

Other: Intended Purpose(s): 
Inclusion of persons with cerebral palsy

History

Start Date: 
Thursday, September 1, 2011
End Date: 
[no data entered]
Ongoing: 
Yes
Number of Meeting Days: 
[no data entered]

Organizers

Who paid for the project or initiative?: 
Spastiker Association Denmark, in collaboration with the Danish Association of the Disabled
Other: Funding: 
Disability Rights Fund (DRF) have supported efforts to establish leadership structures of PWCP across Uganda and to strengthen UNAC’s own leadership capacity. The Abilis Foundation has supported the economic empowerment of PWCP through start-up capital
business development
and management training.
Who was primarily responsible for organizing the initiative?: 
[no data entered]
Type of Organizing Entity: 
Who else supported the initiative? : 
[no data entered]
Types of Supporting Entities: 

Resources

Total Budget: 
[no data entered]
Average Annual Budget: 
[no data entered]
Number of Full-Time Staff: 
3
Number of Part-Time Staff: 
[no data entered]
Staff Type: 
[no data entered]
Number of Volunteers: 
3

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