Negotiating agency: disability activism in Uganda between local contexts and global influences

Abstract

This article explores how disability activists in Uganda mediate their agency between influences of the Global North and local realities. Narratives of activists illuminate limits to their agency on individual, community and national levels and depict challenges to apply global frameworks to local contexts. I argue that the Ugandan disability movement needs to determine a common strategy with an increased focus on social change, but activists do not have the agency to determine priorities as funding organisations impose their agendas. Activists seem to lack awareness of current debates in critical disability studies that would support engagement with unequal power relations and reflections on the assumed universality of concepts. I conclude with the call for a dialogue between critical disability studies and development studies that supports activists in Uganda can develop a context specific disability discourse.

Points of interest

• This article explores the work of disabled people and their organisations who aim to improve the situation of disabled people in Uganda

• While this Ugandan disability movement has had exemplary achievements in the past, currently it seems disorganised and not unified.

• The priorities of the Ugandan disability movement are heavily influenced by funding organisations, which has resulted in a focus on creating laws and policies, while work to improve the attitudes of society towards disabled people has been limited.

• The funding organisations are mainly development organisations that work globally and rarely take specific local contexts into account.

• Critical disability studies debates stress the importance of local context, but the debates do not reach Ugandan disability activists.

• Disability studies and development studies scholars and practitioners need to work together to find ways forward that meet the needs of disabled people in contexts like Uganda.

Keywords:

• Uganda
• disability activism
• agency
• disability and development
• social change

Introduction

Disability activism today presents a significant force (Ciszek 2017), and the formation of international alliances has strengthened Global South Disabled People’s organisations (DPOs) (Meekosha and Soldatic 2011). They were the driving force behind the Convention on the Rights of Persons with Disability (CRPD) (Crpd 2006), which established disability as a political and development issue (Soldatic 2013).

Although disability in the Global South has become a more prominent topic in academia (Chataika 2012); a lack of voices from the Global South persists (Goodley 2011), particularly from disability activists. Research gives little evidence on their practical work located at the ‘anxious intersection’ of the global and the local (Grech 2012, 54) as they mediate between local realities and global influences.

This article aims to fill this gap in the literature by drawing on research on disability activism in Uganda. I will argue that Global North influences decrease the agency of activists on the individual, community, and national levels. Quotes from interviews will illustrate that the Ugandan disability movement is fragmented and lacks a common strategy. Activists describe the challenges of human rights approach and emphasise that achieving disability rights alone is not sufficient (Berghs et al. 2019), but needs to be accompanied by social change.

The article concludes by stating the need for critical disability studies to inform activists as well as the development discourse. I recommend a closer collaboration of academia, activists, and DPOs to determine strategies and explore possible contributions from Global South epistemologies to the disability discourse. Such a critical engagement can support the decolonisation of disability and development studies (Chataika et al. 2016) and facilitate a situated disability discourse.

Critical Disability Studies and disability activism in the Global South

Within critical disability studies (CDS), several scholars have developed a particular focus on the Global South, termed as Southern Disability Studies (Meekosha 2011), Critical Global Disability Studies (Grech 2012) or Global South disability studies (Goodley 2016).

In such contexts, CDS builds on the work of disability studies but emphasises the complexity of the disability discourse and the need for intersectional and interdisciplinary analysis (Goodley 2016). Effects of colonialism as well as globalisation impact on the disability experience in the Global South and must be part of the analysis (Meekosha and Soldatic 2011). Key writers engaging with disability in the Global South such as Chataika (2012), Ghai (2002, 2003), Grech (2009, 2011, 2012), Grech and Goodley (2012, 2013), Goodley (2013, 2016), Meekosha (2008, 2011) and Soldatic (Soldatic and Grech 2014) question the dominance of Global North epistemologies and emphasise the need to respond to socio-cultural factors and politics inherent in disabled people’s lives (Meekosha and Shuttleworth 2009). They criticise the hegemony of Global North epistemologies and their transfer to the Global South without consideration of local contexts (Grech and Goodley 2012; Kuipers and Sabuni 2016), while indigenous practices and knowledge are silenced and ignored (Goodley 2016).

More recently, research engaging with disability activism in the Global South has increased. Publications such as Global Perspectives on Disability Activism and Advocacy (Soldatic and Johnson 2019) and The Routledge Handbook of Disability Activism (Berghs et al. 2019) have contributed to further discussions about the present and future of disability activism.

In an African context, Haang’andu (2019) analyses the opportunities and challenges of disability advocacy. He concludes that although transnational alliances have provided support, their influence led to a Western-centric approach to activism that can be counterproductive. He proposes an Afrocentric paradigm of disability activism that focuses efforts on communities rather than solely pressuring policy makers in order to address deeply entrenched cultural-cognitive beliefs.

Bezzina’s (2019, 2020) work about disability and development in Burkina Faso describes the challenges DPOs face. Lack of organisation, dependence on outside funding and focus on urban centres among other difficulties lead to weakening of the disability movement despite a large number of grassroots organisations. Nevertheless, she concludes that DPOs can provide an important space for disabled people to exchange ideas and find a place of belonging.

Katsui and Kumpuvuori (2008) and Katsui (2020) have analysed the political participation of disabled people in Uganda and raised attention to the need to redistribute power and knowledge for participation to be effective and impact on the lives of disabled people at the grassroots level. Katsui (2009) further illuminated the continuous relevance of the charity model and by linking it to local forms of patronage, provides an understanding that does recognise the agency of disabled people.

Disability activism in Uganda

The negotiations of disability activists in Uganda have led to exemplary achievements on the national level (Lang and Murangira 2009). The political representation of disabled people is one of the highest in the world (Abimanyi-Ochom and Mannan 2014) and includes five disabled members of parliament. Disabled people have manifested their presence in all political spaces (Katsui and Kumpuvuori 2008).

Uganda’s constitution recognises the rights of disabled people under a human rights approach (ibid.). Uganda has ratified the CRPD and developed anti-discrimination legislation on the national level with the Persons with Disabilities Act (Uganda Government 2006).

Considering such accomplishments, the Ugandan disability movement appears to be strong and influential. The National Union of Disabled Persons of Uganda (NUDIPU) functions as an umbrella organisation with a network extending to the district level (Ndeezi 2004), while the National Council for Disabilities (NCD) presents a government body tasked to coordinate disability advocacy work.

This powerful disability movement, combined with a progressive legislative framework, should have led to an improvement of the situation of disabled people at the grassroots level, yet this has not been the case (Ingstad and Whyte 2007). A policy practice gap (Lang et al. 2011) can be observed as the implementations of CRPD and national legislation are aggravated by lack of resources and political will (Wickenden et al. 2012).

Indeed, the overt focus of the disability movement on influencing national legislation resulted in reduced attention to disabled people at the grassroots level who struggle with the persistence of stigma (Lwanga-Ntale 2003). Unchanged cultural values and norms point to a failure to achieve social change, which manifests in the continuous exclusion of disabled people.

Research process

In-depth semi-structured interviews and one focus group meeting were conducted between July and August 2018 with six female and six male disabled activists. The researcher has lived ten years in Uganda and worked as a special needs teacher and in community-based organisations. She is immersed in the local culture and disability discourse, although she has no immediate connection to the area of disability activism.

The group of participants consisted of independent activists as well as representatives of DPOs and international organisations to depict every level of activism. Initially, participants were chosen based on their identification as activists. Two activists were known to the researcher, one worked in the same community-based organisation the researcher had worked with, and one was the mother of a former student of the researcher. Others were recruited through a snowball system with the aim to present a wide variety of areas of activism. DPOs appointed representatives of their organisations.

The participants’ impairments included physical, visual, and hearing impairments as well as one person with Albinism. Two participants were parents of young adults with intellectual impairments. Activists were based in Kampala but worked countrywide and often had rural backgrounds, which enabled the researcher to include lived experiences in such areas.

The data gained from the interview narratives and the focus group discussion was analysed following the structure of narrative analysis with a focus on content (Bold 2012).

A qualitative research approach was chosen to understand the meaning given to experiences of activism and their situatedness in time, space and context.

The research proposed an agency-oriented and situated approach (Oberhuber and Krzyzanowski 2008), seeking to understand the specific Ugandan context. By focussing on the role of disabled activists, disabled people were ascribed agency. ‘Nothing about us, without us’ (Charlton 1998) was given value not only through the narratives of disabled activists but also by acknowledging social structures, values, and concepts imminent to Ugandan culture as part of an Afrocentric worldview (Khupe and Keane 2017).

Two research questions guided the study:

1. Which concepts and themes are relevant for disability activism in Uganda?

2. Which challenges and opportunities are disabled activists facing in their work?

Findings

‘I think that’s the best way to help people with disabilities, trying to teach them how to gain confidence:’ internalised oppression and stereotypes

Self-stigma and loss of self-confidence

On the individual level, activists open spaces for the participation of disabled people through skills development. Economic empowerment programs facilitated by INGOs are widespread and utilise a rights-based approach to encourage disabled people to demand inclusion in the work sector. However, the interviewed activists reported that skills-building alone does not lead to disabled people occupying these spaces.

In a society that predominantly stigmatises disability, the experience of exclusion and discrimination often leads to a loss of confidence and self-stigma through processes of psycho-emotional disablism (Thomas 1999; Reeve 2014). Juliet, an activist for people with Albinism, confirmed that ‘there is a quite lot of self-stigma’. Goretti, the youth leader of NUDIPU, agreed, remembering her childhood: ‘I had self-stigma, my esteem was also very low’.

Maria, an activist with the National Disabled Women’s Organisation, illustrated her struggle with low confidence:

‘When I was young, I couldn’t feel that stigma, but when I grew up, I understood that I had a disability, according to people’s attitudes. Like when I was to go to the market or to any place where there are many people, people could look at you, they say ‘Eh, you look at this one, she has one leg, what!’ and you feel that you have low self-esteem. Even now, sometimes, when I sit, I fear to stand up when people are very many because everyone is going to look at me’.

Self-stigma fosters isolation and reduces the agency of activists to connect disabled people to society. Even if spaces for participation are opened up, lack of confidence often hinders disabled people from occupying them. Ivan, a disabled dancer, described reactions from peers that led to self-isolation during his youth: ‘I wanted to quit education and just sit at home’.

Goretti pointed out how segregated schooling affects self-esteem:

‘I have seen people who have studied in special schools; their esteem is very low; they are not exposed. You know you feel sorry for yourself all the time. You don’t really understand what is happening in society’.

Activists support disabled people to overcome self-stigma through developing self-esteem and positive disability identity. Maria used her experiences to encourage disabled women:

‘The first thing I advise women with disabilities is to accept themselves, the way they are. Even if you have a disability, cause some people, when they say that they have a disability, they think life has ended. Yet it’s not true. First is to accept yourself the way you are. I counselled myself because this disability came; it will not go. So, I have to believe in myself, the way I am, and I started to feel myself, to love myself’.

The social model of disability promotes activism by emphasising the role society plays in disabling processes. However, even though activists aim to utilise the social model, common understandings of disability in Uganda are based on individual models. These conceptualisations affect not only the responses of society but also the identity of disabled people. Disabled people may choose not to identify as disabled and prioritise other identities, limiting the agency of activists to identify and mobilise disabled people.

Local discourses: disability conceptualisations and careers

Simultaneous subscription to multiple and even contradictory models of disability are typical in Global South societies (Nixon et al. 2015), where models of disability exist juxtaposed and are frequently intertwined (Devlieger 2005b; Stone-MacDonald 2012). Traditional conceptualisations locate disability in the realms of supernatural forces (Munyi 2012; Bannink et al. 2015). The medical model and charity model hold inordinate power (Parekh 2008), upheld by international medical organisations and charities operating in Uganda. INGOs and charities often disregard the conceptualisation of disability as a metaphysical experience (Soldatic and Grech 2014) and do not share the beliefs these conceptualisations are based on. Traditional beliefs are, however, deeply rooted in Ugandan society and form people’s realities (Khupe and Keane 2017) and therefore need to be considered by the disability discourse. Maria, who lost her leg through a snakebite, reported that people always associate her impairment with witchcraft: ‘There was someone that was bewitching you’, while Julia, a mother of a child with Autism, commented: ‘Witchcraft, that’s the first thing everyone will think of’. The expertise of activists can contribute to a better understanding of such realities. However, activists need to promote the social model and often do not have the agency to engage with traditional beliefs in the context of the local disability discourse critically.

While INGOs support disabled people through their interventions, they also place them at risk to internalise the charity model. Maria commented: ‘They have in mind that they need to be helped’ and ‘that somebody else should do this for me, not myself’. Effects are multiple: The agency of disabled people diminishes, and accordingly, the agency of activists becomes limited. ‘Disabled people see begging as the best way to go through life’ and can resist activists’ efforts to strengthen their agency. Participants reiterated experiences with disabled people who were ‘stubborn’ and ‘not wanting to leave the streets’ because ‘they still use the charity model’. Moses, a disability rights activist, illustrated:

We’ve found people with disabilities who are adamant, and there’s resistance to change. They still use the charity model, ‘I have a disability, you see how I am?’ And as much as you show them other opportunities they can explore to change their life, they will not take them.

Bosco had similar experiences:

We used to work with disabled people but realised some of them couldn’t even accept to leave the streets because of the benefits there that they are used to. So, I don’t know how we can change that. I don’t think it will ever change totally.

He further recounted responses of disabled people he approached on the streets:

The problem is, such programs come and go. People just use us, and after some time, they disappear. So, we rather go to something where they have assured us that at the end of the day, this is what you’re going to get. That’s the end of the business. So just call us if you have a workshop, tell us to come for a workshop, give us transport allowance, even drinks. That’s it. Don’t tell us about the future.

Activists expressed that disabled people who internalised the charity model ‘use disability as an excuse’, which confirms society’s stereotypes of the passiveness of disabled people (Barnes and Mercer 2010). Bosco concluded: ‘So, there is a stereotype which can grow in your mind and people’s minds. The people you associate with, whenever they tell you that you can do nothing, that can impact you’. Such a negative self-image affects the impact of rights-based approaches. While participants confirmed that a rights-based approach empowers some disabled people ‘to speak confidently about their issues’, they pointed out that many others do not have the confidence as they grew up ‘knowing that they can’t do anything’.

Projects offered by INGOs often focus on the same skills. Due to such a narrow scope, they can also limit opportunities as Moses explained: ‘This business of pushing them into doing tailoring, shoemaking, carpentry, does not give them a mind to think further than they are’. Activists lack agency to explore other pathways for disabled people, and simultaneously, another stereotype within society is strengthened that assigns specific careers to disabled people.

Bosco illustrated how the community advised his mother:

You are spending your money to take him to school, but honestly, he will never, even if he studied, he would never secure a job because no one is ready to employ him. But those people have their jobs. Just take him to town, and he will start mending shoes for people, from the roadside. He will earn a living from there. That’s what they do.

Moses confirmed how stereotypes developed:

So, when I was moving around, I could see people with disability either dirty, begging, or mending shoes. Others mending watches, others were tailors. I remember going back home, and I asked my mum, ‘Do all people with a disability do this kind of work’?

Ivan described how his ambitions were destroyed:

I remember a relative who took me to school when my grandmother had died. I told her, ‘I want to study, I want to get a job’. And she laughed at me so loud, telling me I could only do shoe stuff on my own.

Many INGOs involved in Uganda run similar projects, developing the same skills, such as tailoring or crafts. Such an approach creates heavy competition and local contexts and structures are not considered, leading to ill-fitted projects (Omona and Mukuye 2013), disconnected from the reality of disabled people (Grech 2011). The experience of Rose, a disability sports activist, who was given a sewing machine by an INGO, illustrates the lack of consideration. Due to her physical impairment, she was working on the floor and failed to get customers as they feared their clothes would get dirty.

‘All the attitude begins from the community:’ activists and communities

Community attitudes and influences

On the community level, activists continuously engage with communities to change negative attitudes towards disabled people. Community attitudes have been described in detail by Devlieger (2005a), Riche (2014) and others.

Changing attitudes of communities is crucial for activists as Goretti and Tadeo, a blind activist, narrated: ‘If we don’t push for changes within the community, especially in terms of mindset, then it’s going to be very hard. Activism is all about social change’.

Maria pointed out: ‘For people with disability, the most thing is the attitude that is affecting them, the community attitude towards disabled people’.

Linking individual and community level, activists recognised how to initiate such a change of mindset: ‘If one person changes the mind, the whole community is going to do the same’ and ‘when this person with a disability believes in him or herself, the community does’. All participants, however, agreed that ‘attitude change is the hardest thing to do as an activist’.

Currently, communities perceive the impairment as the dominant narrative and primary identity of a disabled person, which Moses confirmed: ‘The challenge is that the community still looks at me as a person who is disabled’.

Nevertheless, disabled people are ‘living as part of the community’, as Tadeo described, and the experience of disability is both personal and shared (Grech 2011). Unfortunately, many INGOs do not place agency and capacity building into a community perceptive. Disregarding community structures and values, the projects of INGOs often fail to foster sustainable change as they do not empower the whole community through social action (Berghs 2017).

Community ties and belonging are central concepts for African societies (Barker and Murray 2010) who define personhood communally (Soldatic and Grech 2014). Implications for disability activism are ambivalent. As a moral framework, communality mandates respect and support for all people. However, prioritising community needs (Higgs 2012) can have a negative impact on disabled individuals if communities question the capacity of disabled people to contribute to the community. Ivan confirmed: ‘People don’t think that you can add anything to society’. Role models could support a change of attitudes, because if communities can see disabled individuals active in society, they will ‘also have in mind that these people do exist and can do something. It has to start from what they see’.

Currently, most activists perceive communities as social structures that hinder rather than enable the participation of disabled people. Maria recounted how community experiences affected her:

It was hard leaving that negative attitude that I had donned upon, because it was because of the people, the community, how they see you, how they treat you, that I’d bring to me that stigma.

Most participants also noted that while community and interdependence frameworks persist (Grech 2012), community support for disabled people has decreased. ‘Communities do not care for disabled people’, observed Juliet.

On the other hand, Tadeo described a different response of communities in his experience of community ownership:

These elders are brought on board. Because for them, what they need is to know what a person with a disability, what kind of things he needs, what kind of care. So, if they are well sensitised, you’ll find them urging others. ‘Please, when you see him on the road, make sure he gets to do this, support him in this way’.

Tadeo’s response describes how community structures can be utilised by activists to build networks of disabled people and activists and communities.

The human rights approach and communities

Activists recognised the human rights approach to disability as powerful but emphasised that its impact rests on the efforts of activists to translate it into local contexts. Tadeo commented: ‘We use these models and translate them, customise them, break them down, lower them to fit the context’, while Moses stressed that ‘activists need to bring in the local content and then borrow ideas from the West and cause change’.

Currently, the application of a human rights approach to the Ugandan setting appears to be difficult and removed from the daily experiences of disabled people at the grassroots level. Activists acknowledged that for many disabled people, a rights approach is ‘not making sense’ as ‘most of the rights, according to the people in the village, it doesn’t work’. Maria emphasised challenges due to implementation gaps:

When you tell disabled people about their rights, even the rights are not implemented. It’s they are there, but they are not implemented.

Peter, who works for an INGO, pointed out the different priorities for disabled people at the grassroots level:

But to that woman down there, who was left by her husband, because she produced a disabled child, human rights don’t make sense. What she wants first are the basics. To be able to buy food, to be able to feed this child.

The human rights approach to disability and its salience to Global South contexts have been discussed in academia (Chataika 2012). A human right approach might not be sufficient to encompass the complexities of a disabled identity in the Global South (Ghai 2003). Activists expressed that currently, a human rights approach is most helpful ‘at the planning level, for the policymakers who have knowledge’. Without appropriate alternatives, activists try to make the human rights approach and the underlying social model accessible and applicable to local contexts (Sharma 2015).

Participants recommended developing a disability model that incorporates local contexts and juxtaposing epistemologies, paying justice to the more dynamic understanding of disability in the Global South (McKenzie 2013).

Maria concluded:

I think it could be better if we develop our own concept for disability than using the one of Western culture. Africa should develop their concept for disability.

Tadeo summarised why existing models fail to encompass the African experience as they do not recognise social structures:

‘There is a way they do their own thing, their cultural bit, their religious, and their way of understanding’. He continues: ‘The human rights, how can we balance them with the what? The community? Because in an African way of understanding, it is not like in the UK whereby a person has the right to ask for anything’.

Community-based practices of disability rights (Nguyen et al. 2015) can link communities and human rights together. However, activists need to have the agency to analyse how this could look like within their contexts. Tadeo recommended the development of an African model by ‘embedding human rights and social model into the community aspect and way of understanding these things’.

This ‘community aspect’ has been thematised by CDS and postcolonial scholars through their engagement with the social ethics of Ubuntu (Barker and Murray 2010, Berghs 2017, Mji et al. 2011; Ngubane-Mokiwa 2018). Acknowledging interconnectedness as framed by Ubuntu (LeRoux 2000; Mji et al. 2011) transforms disability from an individual issue to a community issue that calls for collective action to achieve social justice (Berghs 2017). Emphasising the shared humanity and respect for diversity as inherent in Ubuntu (Berghs 2017) can support recognising disabled people as part of communities and focus attention on social cohesion (Haang’andu 2019). However, as Goodley and Swartz (2016) question the inclusivity of Ubuntu in terms of disability as disabled people might not be perceived as being part of the community. More research is needed to develop an African model of disability, taking into consideration all implications of Ubuntu as well as a dynamic understanding of disability that acknowledges the ongoing relevance of charity and religious or spiritual models of disability.

The CRPD and communities

The CRPD, which presents proof of agency of activists in the Global South (Grech and Soldatic 2016), has been developed as a tool to enforce human rights for disabled people. However, its impact remains limited due to implementation challenges. Participants recognised the potential of the CRPD but also admitted its complexity. Esther, a representative of the NCD, remarked:

It is for few, who understand and appreciate it. People in Uganda, many are not understanding the law; it is known by few.

Activists pointed out limits to the capacity of disabled people to demand their rights:

‘They cannot read; they cannot write. They cannot challenge the law. They cannot stand up when they’re being discriminated’.

Moses admitted:

I’m only semi using the CRPD if I go to the community, and I’m talking particularly on how to end poverty. That’s when I refer to it, but I cannot explain how a local PWD benefits from the CRPD. It will benefit me as an advocate.

He further confirmed the critique of the CRPD’s focus on the nation-state (Soldatic 2013):

And one thing I saw in the CRPD, there is a line called ‘the state’ and the question is, ‘Who is the state?’ They all hide under ‘the state will do this; the state will do that’, and it stops there. So, it is the role of activists to go back and say, ‘Who is this state in this nation?’

Unclear responsibilities limit and redirect the agency of activists. Besides, causes and redress of impairments often lie beyond the nation-state’s capacities, rendering it powerless (Cutajar and Adjoe 2016). Not only activists lack agency, but also the nation. The capacity of both duty-bearers and rights holders needs to be increased (Katsui and Chalklen 2013).

As described above, rights holders live in the context of communities. Several authors have pointed out that individualistic rights-based approaches might less meaningful and are not an ideological fit for Global South contexts that define personhood communally (Grech 2011; Wickenden et al. 2012; Businge 2017). Community needs may be prioritised over individual needs (Mbiti 1970; Higgs 2012), and a sense of identity is not derived by achieving individual goals, but by improving the common good (Mbigi and Maree 1995). Demanding individual rights based on a human rights approach seems to at odds in such a context. Onazi (2020) discusses reciprocity as an important aspect of Ubuntu, which places obligations on every member of the community (Malunga 2006; Idoniboye-Obu and Whetho 2008). Disabled people might not be able to fulfil these obligations and therefore their personhood might be questioned (Onazi 2020), making rights claims challenging. The complex relational concept of community can result in disabled persons refraining from demanding rights as it could affect their social ties. Communal solidarity is perceived as more binding than individual aspirations (Haang’andu 2018), presenting complex challenges for activists who work within frameworks of the human right approach.

‘We have laws; we have policies. But the performance is little in terms of services, delivery, and implementation:’ the national disability discourse

Implementation gaps and lack of capacity

The implementation challenges of the CRPD also apply to the national legislation. Peter acknowledged the existence of good laws and policies but agreed that legislation

is only on paper. It may be good, it may be beautiful, it can be used as a tool to lobby other partners, but on the ground, the implementation is not done.

Goretti agreed: ‘I think in as much as Uganda has excellent policies, we still have challenges in those policies in terms of implementation’, and Paul, a deaf activist, commented, ‘The laws are there, but they are full of dust’. Such an implementation gap reduces the agency of both activists and disabled people to enforce their rights.

Participants noted that while the representation of disabled people on all political levels is a great achievement, the agency of these representatives is minimal. Moses shared how disabled MPs are excluded from planning and decision-making processes because disability is not recognised as a cross-cutting issue:

You don’t see it in plans; you don’t see it in budgets. You don’t see the representatives being invited to meetings so that they can know and contribute.

Maria referred to a lack of representatives’ capacity due to their additional needs, which are not recognised in their budgets. As a result, a sound system is undermined, and disabled representatives are reduced to ‘sit, get their allowances, and go home’ without demonstrating agency.

Esther illustrated the limited agency of local councillors:

We engage with the local government, the councillors, representing people with disabilities. In the districts, they are just like puppets, because when they’re in their councils, they don’t even know whom to approach and how. Apart from sitting once in a quarter, that is all. We asked them about some of the advocacy issues that they push to those councils, and they were like, ‘But if they give us a small budget, how can you advocate with that? We are two councillors; we are representing many sub-counties within our district, so the number of constituents is big. You are talking about organising meetings? But even just one meeting will finish the whole budget because people need transport’. So, their hands get tied up.

Goretti agreed:

They have no capacity. We have councillors representing persons with disabilities at all levels. They go to meetings, sit for the five years they’re in office, none of them can come up with a petition about the issues that affect them because they don’t even know how to write it. Sometimes they don’t even speak. They’re there; they’re not even listening, because they don’t communicate effectively in English. And the few that understand what, they’re taking advantage of others. They want to be the ones benefitting at the expense of those who don’t understand.

Maria questioned the impact the disabled members of parliament can have:

No, the people with disabilities on the grassroots don’t benefit from those members of parliament. The person who is disabled in the village, I don’t think there is anything that person is benefitting. Those members of parliament are just benefitting themselves but not the people they are representing.

The impact of INGOs

The influence of INGOs on the work of disability activists (Chataika et al. 2016), was confirmed by all activists who noted that dependence on outside funding limits their agency and leads to ‘jealousy and competition for resources’. INGOs determine thematic areas of disability activism, but their presence has also impacted the structure of the Ugandan disability movement, which activists described as disconnected.

Interventions of INGOs focussing on disability issues have opened up pathways for activists to partner with these organisations directly. However, such partnerships often lead to a breakdown of communication between locally based organisations because ‘each group is doing their own thing’. Rather than combining efforts to work on a coordinated approach, individual organisations ‘just write to the donors, get money, and spend the money’. Activists pointed out that the movement’s lack of strategy and direction reduces their agency and limits its impact:

Until we have a reason why we need to come together, and that reason is disability. Otherwise, we’re not going to make our voice reach further.

The presence of charities heavily influenced the structure of the Ugandan disability movement and led to the formation of impairment specific organisations that remain in place until today. Activists described the competition and a hierarchy of impairments within the disability movement that further contributed to its fragmentation, stating that ‘we haven’t got the unifying factor that pushes us together’. Tadeo pointed out that ‘even within the disability fraternity, they discriminate against each other’, which was confirmed by Goretti, who observed that ‘even within the disability organisations, there is an attitude of internal discrimination’.

As many INGOs focus their efforts on the urban areas, ‘disabled people in the urban areas are okay, but those in the villages are miserable. People in the villages are not benefitting’.

External funding has also contributed to a lack of strategic planning, as each INGO follows its agenda and does not seem to coordinate its efforts with other organisations. As a result, many DPOs run similar projects, which limits the effectiveness of the disability movement. Esther emphasised the need to ‘plan together. Stop reinventing the wheel. Stop eating resources, doing the same things’.

While direct funding is currently necessary to facilitate interventions, activists recognised its implications on their agency. They are rarely involved in project planning, yet their insights could ensure that projects align with disabled people’s needs and lived realities. Instead, activists have to conform to the agendas of their funders (Goodley and Swartz 2016) despite limited relevance for their contexts.

As a result, activists often pay lip service to funding organisations. Moses confirmed the practice of including key phrases into proposals to secure funding:

We only use the human rights approach when we’re writing proposals because the funder wants to read that line.

Adhering to the strategies and methods dictated by the funding organisations, activists also have fewer opportunities to explore and develop local concepts and context-specific methods.

The unsustainability of external funding was expressed by all activists because ‘people come and go’, and often projects end when the organisation leaves. Peter noticed the importance of building the capacity of local activists:

If you build the capacity of an activist, and the project left, you’ll have this human resource.

With corruption within DPOs recognised as a significant challenge, Esther further pointed out that external funding is continuously at risk of withdrawal, because ‘who funds those who have swindled money’. All participants mentioned a lack of transparency and accountability: ‘Like it stops somewhere in someone’s pockets’. Tadeo explained widespread corruption stating that ‘Charity begins at home. And that’s how the game is played’. Julia confirmed: ‘First you satisfy your family, and then distribute the rest’.

The role of NUDIPU

Participants questioned the role of NUDIPU as a national leader of the disability movement. They critiqued the limited presence at the grassroots level and lack of inclusivity to encompass the diversity of DPOs and impairment groups in Uganda. Harriet, who trains young adults with intellectual disabilities, expressed her frustration about the marginalisation of people with intellectual disabilities by NUDIPU: ‘The effort NUDIPU is putting into keeping updated with the movement and being inclusive is very limited’. Goretti further chimed with Bezzina (2019), noting that DPOs often marginalise young people:

People will believe that the youth have no knowledge, no experience, and they’re not given the platform to say whatever they can say. We don’t have space to make decisions; we are not included in different programs of our mother organisations.

The focus of DPOs like NUDIPU on the national level has weakened their community roots (Omona and Mukuye 2013) as Goretti confirmed:

Our capacity as a national leader is limited. Currently, NUDIPU is only operational in 30 out of more than 110 districts. We rely on funding from the donors, but it’s becoming less.

These developments present a risk for the agency of NUDIPU as a national leader. It seems that it does not represent its whole constituency. NUDIPU lacks the capacity to listen to the voices of disabled people at the grassroots level and coordinate the national disability activism agenda. Without a coordinated approach, the Ugandan movement is at risk of losing valuable allies, as ‘even the speaker of parliament challenged the disability movement to become more coordinated’.

Way forward

Esther summarised the challenges of disability activism in Uganda:

So that is the challenge we have with our activism. People are selfish, that’s one thing, another thing, people don’t understand the issues. Then, the modes of communication are too challenging to reach the grassroots, so that’s why you see, we have some different divisions in our course in terms of disability.

Moses pointed out how such divisions affect the agency of activists:

We as activists now, we don’t know where we are going. And we don’t know what we want at the moment. We’re gonna do just piecemeals on issues. So, this is the same thing that we are giving to the next generation. They’re also doing small things; they say, ‘It’s not me, it’s the government’. But the question is, ‘What can you do?’ And then the government can add because you’re supplementing what the government is supposed to do. I think we need to have a new strategy.

DPOs need to develop agency to determine their agendas and define such new strategies according to the needs of disabled people at the grassroots level as Moses emphasised:

The issue of wanting results in terms of policy, programming, and what does the donor say about this; I think now this is also affecting our advocacy and activism thinking. Because activism, activism is all about social change, okay?

Ivan saw building alliances with other marginalised groups as an opportunity to include the disability agenda and contribute to social change:

‘Synergies can be one way to achieve our advocacy. We need to move out of the box, work with different activists, like not necessarily working in the disability area, I think we need to scale out, get out of the disability brackets and now join the rest of the world’.

Goretti added:

We have to go back on the drawing board and strategise. If what we have been doing has not yielded us results, then we have to think outside the box. Come up with better strategies. We research.

Esther understood the contributions research could make to the agency of disability activists:

‘We have not studied the concept of disability properly. There are no universities who are trying to come out with disability and encouraging people to study more about issues of disability and researching more about disability because research on disability in Uganda is very minimal’.

Discussion

Participants of the study described their limited agency in the current context of the disability movement in Uganda. While they gained achievements in political spaces, the agency of disabled people to utilise these spaces is limited by implementation gaps, lack of capacity and negative attitudes from society.

Organisational and structural challenges within the Ugandan disability movement present further limits to the agency of activists. Participants voiced their frustration about corruption and lack of cooperation between organisations and emphasised how it reduces the agency of the movement as a whole.

The symposium on the situation of the Ugandan disability movement held in 2018 (NUDIPU 2018) confirmed the findings of this research, but could not determine any concrete steps to overcome these challenges. In a general roadmap, reducing donor dependence, competition within DPOs, developing a common strategy, the building of alliances and increasing accountability were identified as issues of concern, but it remains unclear how this can be achieved (NUDIPU 2018).

Activists seem to lack agency to imagine a way forward. While the research participants also struggled to map out future strategies, they suggested strengthening the disability movement by cooperating with other marginalised groups and the use of research.

The need for social change

Activists agreed that current methods and concepts of their work only have limited impact as they do not consider the need for social change. Unfortunately, their agency to foster social change is limited as they have to align priorities with the funding INGOs (Aniyamuzaala 2012). These INGOs’ agendas centre around political and economic empowerment, leaving activists with little agency to engage with theories on how to produce social change and influence social structures. Activists described how they are caught up processes of glocalisation by modifying the human rights approach to fit their particular culture (Iriarte, McConkey, and Gilligan 2015).

The relevance of social change was not only explicitly mentioned by participants; their accounts of self-stigma and limited opportunities for participation draws attention to the need to change attitudes of individuals, communities and society. Disabled people will not utilise the opening of economic and political spaces without accompanied social change. The interviews demonstrated the persistence of individual models of disability, which results in negative attitudes from society and disabled people themselves. Discrimination based on spiritual and religious beliefs remains common, and the charity model is widespread in society and has been internalised by disabled people, limiting the agency of activists to mobilise them.

The charity model is further reinforced by the omnipresence of charities in Uganda, which work not only with disabled people but also with other marginalised groups. Competition for funding between marginalised groups affects opportunities for cooperation, making it questionable if the synergies that activists envisioned as a way forward can be achieved.

Research and cooperation between academia and activism

Activists mentioned research as a way to increase their agency, not only in the context of analysing the needs of disabled people, but also to engage with the global disability discourse. Activists gained their knowledge about models of disability from their funding INGOs. Unfortunately, there has been no awareness of critical disability studies debates that discuss disability contexts in the Global South and global power influences. Only two of the participants were aware of research that had already been undertaken by development organisations, while works from CDS were unknown. Such lack of awareness is concerning, but also points to lack of participation of DPOs in research projects and challenges in dissemination.

The critical disability studies discourse has thematised many of the issues brought up by the participants. As confirmed by the participants, disability is a fluid concept and conceptualisations of disability are complex. The interdisciplinary and intersectional outlook of critical disability studies opens doors for an analysis of the multiple aspects that impact on the understanding of disability in contexts like Uganda. Critical disability studies further recognises the need to engage with indigenous practices, investigate the relevance of communities (Goodley et al. 2019), and interrogate power differentials (Devlin and Pothier 2006).

In addition to insights on the already mentioned issues, critical disability studies can give activists input to reflect on their positionality (Goodley et al. 2019). This will enable them to develop a discourse that aligns with the lived realities in Uganda.

Such knowledge can further increase activists’ capacity to negotiate global power inequalities that affect not only the lived realities of disabled people, but also their agency.

A closer cooperation of academia and DPOs (Kett et al. 2019) can increase the capacity of activists to engage with frameworks in a meaningful way for the Ugandan context rather than just to adhere to given meanings.

The activists’ struggles to apply the human rights approach point to the need to gain further insights into the understanding of human rights from an African perspective (Chataika et al. 2015). Two activists suggested exploring how a human rights approach could look like in a Ugandan setting and recognised the positive contributions communities and local practices could make. Most participants referred to communities as important but emphasised how they hinder the participation of disabled people. By disregarding communities, opportunities to explore the meaning and application of community structures to the disability discourse (Ngubane-Mokiwa 2018) are not utilised. Disability affects not only the individual but shifts relationships in families and communities, making social change mandatory to ensure positive attitudes.

Conclusion

At its current state, the disability movement in Uganda consists of various organisations and actors that struggle on all levels of society to improve the situation of disabled people. The diversity of the organisations should be acknowledged postively, but lack of coordination and strategy have led to a multitude of organisations rather than to a coordinated movement. Participants further noted issues of marginalisation as the movement struggles to reach out to disabled people at the grassroots level and be fully inclusive.

This research has demonstrated how the agency of activists is influenced and limited on all levels of society. Activists are caught in positions of dependence and inability to develop their agendas and frameworks. As a result, critical engagement with the hegemony of Global North epistemologies is often avoided.

Activists need the agency to impact individuals, communities, and national frameworks to build a sustainable future for the Ugandan disability movement. To develop such agency, knowledge of and engagement with current discussions and research are crucial, so activists look beyond immediate needs only.

The work of CDS, particularly questioning universal concepts and foregrounding a situational analysis that takes into account the specific historical, cultural and material contexts disabled people in the Global South, can not only support capacity building of activists, but also create impetus in development studies.

Considering the substantial impact of development organisations on the disability movement in Uganda, critical disability studies need to seek a dialogue with development studies to understand the specific context of disability in the Global South. Such dialogue is emerging through interdisciplinary and participatory research and the linkages that have been made between poverty and disability (Grech 2016).

However, although disability has become recognised as a development issue over the past two decades (Grech 2015), disabled people have not yet benefitted from development efforts (Groce and Kett 2013; Niewohner, Pierson, and Meyers 2020). A ‘disability and development gap’ (Groce 2018) persists as the incorporation of disability into the development discourse appears unsystematic and technocratic (Kett et al. 2019, Grech 2016).

Despite commitments to participatory approaches, development efforts that prioritise the voices of disabled people remain scarce (Grech 2016), and generalised and simplified conceptualisation of disability dominate the discourse (Grech 2015, 2016). The majority of development efforts continues to address disabled people as a homogenous group and does not consider their agency and knowledge (Trani et al. 2011; Sonpal and Kumar 2012; Grech 2015). Interdisciplinarity becomes key as insights from CDS scholars need to inform development work and through this pathway also reach disability activists. At the same time, CDS needs to develop a presence and discourse in the Global South. Disability studies courses in Uganda currently do not exist as independent programs. Development organisations therefore still have a role to play as vehicles for the transfer of knowledge and in capacity building of local activists. However, activists should determine the areas of support needed. Activists in the Global South display agency despite numerous barriers and challenges, and this agency needs to be valued and supported.

Disclosure statement

No potential conflict of interest was reported by the authors.