Participation, Legal Capacity, and Gender: Reflections from the United Nations Partnership on the Rights of Persons with Disabilities Project in Serbia

Abstract

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) establishes that people with disabilities shall enjoy their human rights on an equal basis with others. Those rights include the right to legal capacity and to protection against discrimination, including intersectional and multiple forms of discrimination on the basis of disability and gender. In an effort to support the realisation of the CRPD, the United Nations team in Serbia undertook a project to address the implementation of these rights under the UN Partnership on the Rights of Persons with Disabilities (UNPRPD) programme. Namely, by bringing together stakeholders from the UN, government and civil society, the UNPRPD project in Serbia sought to create structural changes to uphold the rights of people with disabilities. With a view of understanding the process of change within, rather than the outcomes of, this UPRPD project, twenty-eight semi-structured interviews were conducted using the Most Significant Change Technique (MSCT) with key stakeholders involved in such a project. The interviews were analysed using Interpretive Phenomenological Analysis (IPA) to preserve the unique and diverse perspectives of participants who had differing roles across the project. The analysis allowed us to identify a number of facets of the process that facilitate structural change: coalition-building events; strengthening stakeholder capacity and relationships; the participation of persons with disabilities; and innovation in terms of what made the project significant, novel and in itself a change. All these facets are discussed in this article, with the purpose of supporting global efforts in alignment with the CRPD. On the whole, this article aims to support a better understanding of disability-inclusive development projects in line with the CRPD and to give evidence on how countries may begin to tackle the structural exclusion of persons with disabilities in society.

1. Introduction

The United Nations (UN) adopted the Convention on the Rights of Persons with Disabilities (CRPD or ‘the Convention’) in 2006. The CRPD is considered a groundbreaking treaty, which ‘sets out explicitly the many steps that States must take to create an enabling environment so that persons with disabilities can enjoy authentic equality in society’ [1]. The CRPD recognises that ‘disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others’ (Article 1(2) CRPD) and revolves around the key principles of dignity and autonomy, equality, accessibility, and participation [2,3]. The CRPD also values the diversity of persons with disabilities. In fact, Article 3(d) CRPD includes ‘respect for difference and acceptance of persons with disabilities as part of human diversity and humanity’ as a general principle [3].

In the sixteen years since the adoption of the Convention, many States Parties have struggled to amend their laws, social policies and practices to align with the broad-ranging obligations of the CRPD and to allow full participation of people with disabilities in society. In 2011, the United Nations (UN) established an interagency programme, i.e., a programme managed by and funded through an array of UN agencies, including the UN Department of Economic and Social Affairs (UN DESA), the World Health Organization (WHO), World Health Organisation (WHO), United Nations Development Programme (UNDP), United Nations Educational, Scientific and Cultural Organisation (UNESCO), United Nations International Emergency Children’s Fund (UNICEF), and the organisations involved in the Serbia project: International Labor Organization (ILO), United Nations Population Fund (UNFPA), UN Women and the Office of High Commissioner for Human Rights (OHCHR). This programme, named Partnership on the Rights of Persons with Disabilities (UNPRPD), aimed to provide support to select countries as they begin to implement various aspects of the CRPD.

Since its inception, the UNPRPD has aimed to initiate change to normative structures that exclude and create barriers for persons with disabilities accessing their human rights [4]. Being present in 39 countries and 3 regions at the time of this study, the UNPRPD has supported a range of diverse initiatives and projects [5] and provided technical expertise to bridge government sectors with civil society and build capacity while addressing human rights concerns that are specific to certain domestic contexts [4]. According to the UNPRPD Strategic and Operational Framework [4], the United Nations Country Team (UNCT) must work as part of a tripartite partnership with persons with disabilities as rights holders and members of civil society and also as equal partners with government throughout the project cycle. The partnership approach is a defining feature of their programmatic Theory of Change (ToC), whereby the UNPRPD introduces technical expertise in collaboration with key actors to promote normative environment reform, capacity, and coalition building as levers of change to realise disability rights at the structural level [4].

While the UNPRPD is a significant cross-cutting programme, it has also unveiled challenges to the provision of technical expertise as comprehensive as the CPRD and has resulted in initial phases of programming focused strongly on the agency specialisations available within the local UN Country Team (UNCT) [6,7]. For example, in countries with UN Women and UN Population Fund (UNFPA) agencies on site, activities were largely focused on sexual and reproductive health (SRH) and gender-based violence (GBV) and would be quite different from those countries in which there is the on-site presence of OHCHR, which focuses on human rights [6]. Projects that stemmed from the availability of UN expertise rather than from initiatives already being led by Organisations of Persons with Disabilities (OPDs) struggled to find civil society partners focusing on the same things [7]. Previous work has also shown that this distinctive tripartite element of the UNPRPD process—identifying, engaging, and unifying key diverse stakeholders, often for the first time—can present challenges for implementation activities [7].

Serbia signed the CRPD on 17 December 2007 and ratified it on 31 July 2009 [8]. As part of the Convention reporting procedures, in several sections of its Concluding Observations published on 21 April 2016, the UN Committee on Rights of persons with Disabilities (the CRPD Committee) found little evidence of the true conditions of persons with disabilities in their daily lives in Serbia [9]. The Committee provided general recommendations, noting exclusionary laws and bylaws, insufficient training and awareness of rights, insufficient participation of persons with disabilities in decisions affecting them, and lack of action to reduce discrimination and uphold the rights enshrined in the CRPD. While the CRPD Committee highlighted large, systematic barriers, little guidance on how to implement or initiate structural change towards realising disability rights exists in the literature today.

Against this background, this article reflects on one project under the UNPRPD programme in Serbia and aims to explore the generative and open-ended research question: Has the UNPRPD programme triggered structural change in Serbia, and if so, how? Serbia provides a meaningful case study, as the primary activity for the UNPRPD project was to address longstanding discrimination and marginalisation faced by people with disabilities by addressing reform of national legislation permitting the deprivation of legal capacity on the basis of disability (Serbia’s Family Law) to align it with Article 12 CRPD, as well as efforts to address Article 6 CRPD regarding the rights of women and girls, and Article 27 CRPD relating to employment. Article 12 CRPD is difficult to implement for a myriad of reasons, and this article was targeted in only 2 of the 36 UNPRPD country projects selected for funding across three rounds of the UNPRPD programme [6]. The UNPRPD project in Serbia established an inclusive and meaningful process, which might constitute a significant example of how to initiate such change away from deprivation and towards a rights-based model aligned with the CRPD. As such, it could become a reference point for the global community in realising the rights of persons with disabilities provided for in CRPD. In that regard, this contribution, while building on existing literature on CRPD and disability rights, does not intend to carry out a legal analysis. Rather, it is based on qualitative methods to identify what supports structural changes. In particular, as the result of rigorous qualitative research, this article aims to support a better understanding of disability-inclusive development projects in line with the CRPD and to provide evidence-based research on how countries may begin to tackle exclusion at the structural level.

After these introductory remarks, this article is structured as follows. The Section 2 provides an overview of the relevant CRPD provisions found in the UNPRPD project in the Serbian context, followed by the research methodology in Section 3. Section 4 provides the results of participant interviews across stakeholder groups categorised by emergent themes. Finally, the article closes with key insights around participatory processes and twin-track programming found in the Serbia project to tackle structural and sensitive issues such as legal capacity and intersections with gender in disability-inclusive development.

2. The UNPRPD Project and the Serbian Context

The CRPD Committee recommendations informed the project proposal to the UNPRPD, and Serbia was selected for the programme’s second round of funding over two years, between 1 March 2018 and 28 February 2020, focusing on three pillars of work. First, the UN Country Team (UNCT) led by OHCHR sought to amend the legal capacity provisions included in Family Law regarding individuals with intellectual and developmental disabilities (IDD). The second pillar of work focused on the rights of women and girls, specifically sexual and reproductive health (SRH) and peer mentorship. The final pillar of work was smaller than the first two, focusing on increasing the capacity of both the labour market and the workforce of persons with disabilities. This article focuses particularly on activities concerned with the first two pillars. It recognises that legal capacity reform is fundamental to realising other rights enshrined in the CRPD, although amending Serbia’s Family Law does not in itself uphold other rights. Having legal capacity does not guarantee employment, although a lack of legal capacity does restrict such a right. An amendment to the law in Serbia would ‘open the door’, but not in itself guarantee change. This is an example of the sort of ‘structural change’ the UNPRPD seeks to achieve, where the ‘rules of the game’ change to allow for social systems to operate differently [10,11], such as individuals with IDD participating in their own decision-making about employment. The ‘rules’, according to social theorist Pierre Bourdieu [10,11], define what is normative in a social system, but they do not necessarily determine the outcome. The CRPD effectively seeks to change the ‘rules’, whereby nations sign and ratify new sets of rules, but each society may have different interpretations of how the Articles will be applied in their country context. Thus, issues of legal capacity may result in unique barriers, for instance, for women with IDD in a particular country. This may, for instance, require gender-specific interventions in the case of Serbia’s Family Law and beyond.

2.1. The First Pillar: Legal Capacity

Under Article 12 CRPD, perceived or actual deficits in mental capacity must not be used as a justification for denying legal capacity (both legal standing and legal agency), and people with disabilities are entitled to equal recognition before the law [12]. It envisages the shift from the substitute decision-making paradigm, whereby a family member or appointed guardian makes decisions for an individual with an intellectual or developmental disability (IDD) without direct input from the person in question, must be abolished in favour of supported decision-making, keeping individuals with IDD at the centre of their decisions by providing support to help them make choices [2].

The situation of people with disabilities in Serbia has undergone review by the CRPD Committee, which, in line with its General Comment No. 1, clarified in its Concluding Observations that any laws that allow the full or partial deprivation of legal capacity on the basis of disability and function violated several articles of the Convention [9,12]. As of 2016, Beker and Milosevic identified more than 30,000 individuals deprived of legal capacity in Serbia (MDRI-S 2016), 93% of which had full deprivation and only 7% had partial [13]. Deprivation of legal capacity is a legal denial of personal decision-making and entails the violation of several human rights, such as the right to marry, be employed, possess and manage financial resources, and have a driver’s license. As reported in the Academic Network of European Disability Experts (ANED) Country report on Living independently and being included in the community in Serbia [14], the large majority of adults with disabilities live in institutions. The CRPD Committee has often recognised that violations of the integrity of the person occur in the context of involuntary medical treatments for individuals deprived of their legal capacity, and such violations are reported in the case of Serbia [9,13]. Further, the case for reinstatement of legal capacity is eligible if the reason for removal, such as a disability, ceases [9,13]. In this way, persons with IDD spend years deprived of legal capacity, often in institutions, once a court makes its determination without the opportunity to appeal the decision. In response to the CRPD Committee findings, the scope for the initial round of UNPRPD support focused specifically on Chapter 5, Articles 146–150 of the Family Law [15], addressing the full and partial deprivation of legal capacity, restoration, and decision processes by drafting the amendment and providing technical support. They also sought to shift the national model from substituted decision-making towards a supported decision-making model.

The United Nations Country Team (UNCT—which coordinates UN activities in a country) drove the project with civil society partners who were experienced advocates in the area of legal capacity and familiar with the concerns commonly cited in opposition to amending the law, such as personal and financial vulnerability. Therefore, while the intent behind the mentorship program in the second pillar of work was not explicitly to reinforce efforts to amend family law, legal capacity was always in the conversation, and participants with IDD were included.

2.2. The Second Pillar: Women and Girls with Disabilities

According to the CRPD Committee, the Convention embraced and put forward a model of inclusive equality, recognising multiple and intersectional inequalities, i.e., inequalities that derive from the intersection of disability with other grounds, such as gender. In that regard, the CRPD includes a provision for women and girls with disabilities (Article 6). Article 6 CRPD recognises that women and girls with disabilities are subject to multiple and intersectional discrimination and requires States Parties to take measures to ensure them the full and equal enjoyment of all human rights.

While violations of legal capacity are well-known, evidence of the conditions facing women and girls with disabilities in Serbia lacks specificity, resulting in general recommendations from the CRPD Committee in their Concluding Observations [9,16]. The recommendations included broadly incorporating women and girls with disabilities in policy development and strategy, active prevention of population-specific discrimination, participation in development projects, and investment in gender-equality-related programming [9]. Interventions were nonspecific, recognising the multiple forms of discrimination at the intersection of gender and disability. In this respect, the CRPD Committee’s recommendations align with those of the Human Rights Committee, which monitors the implementation of the International Covenant on Civil and Political Rights (ICCPR) [17], which recommends raising awareness around gender equality, protective measures for vulnerable groups (e.g., single mothers with disabilities, women with disabilities deprived of legal capacity), and implementing gender equality as mandated in international treaties.

Discrimination on the basis of gender and disability, such as the deprivation of legal capacity, can affect all areas of life, having a knock-on effect on the enjoyment of all human rights.

3. Background, Materials, and Methods

3.1. Situating the Study

There is an array of disability law scholarship on the CRPD and on its transformative potential [18], and several academic publications and journal issues are addressing various aspects of international and European disability law [2,19]. A range of articles have addressed the normative content of Article 12 CRPD and the challenges it brings about [20,21], and some authors have approached this provision from a critical standpoint [22]. Article 12 CRPD has been considered a ‘controversial’ legal norm [23], but it has also been deemed revolutionary [24], and commentators have addressed legal capacity reforms (or lack of reforms) in several countries [25]. Similarly, legal academic commentators have addressed intersectionality as well as the intersection of gender and disability as grounds for discrimination [26]. This article, while taking into account that legal scholarship, adopts an interdisciplinary approach and is based on qualitative methods, as detailed below.

There is a wide range of socio-legal and disability studies on inclusive processes and the participation of persons with disabilities in policy-making, with notable case studies being presented [27]. However, so far, no studies have specifically focused on processes supported under the UNPRPD initiatives, and literature on Serbia is also limited. Concerning the latter, alongside policy reports and studies, such as ANED’s ones, few studies in the English language have addressed the situation of people with disabilities in Serbia. Those studies adopt discrete disciplinary perspectives and often focus on specific issues. For example, several recent articles discussed the situation of children with disabilities [28,29]. In the context of broader analysis, scholars highlight that people with disabilities remain at the margins of Serbian society and experience structural discrimination through segregation and institutionalisation [30].

On the whole, this article adds to the current multifaceted scholarship in many respects. First, as noted above in the introduction, this article reflects on one project carried out within the remit of the UNPRPD programme in Serbia, highlighting the strengths and weaknesses of those international initiatives. Further, it sheds light on a country that remains underrepresented in terms of disability literature in the English language, although it does not entail a legal analysis of Serbian Family Law. Further, by using a methodology, as described below, that is chiefly qualitative, it allows us to reflect on what is identified as facilitative of structural change. It hence serves as an important case study to gauge a better understanding of participatory projects, such as those initiated under the UNPRPD, and how these projects allow initiating structural change.

3.2. Materials and Methods

Qualitative, semi-structured interviews took place in Belgrade in September 2019, following approval from the Maynooth University Research Ethics Committee on 2 April 2019. Each interview lasted an average of 60 min. Participants involved in the UNPRPD project acted as representatives of their broader organisation, as the UNPRPD programme requires organisational partnership as a core driver of change. Partners included a variety of OPDs, disability rights organisations, local United Nations country teams, government ministries, and researchers (see

Table 1. List of participants by UNPRPD partnership.

Partnership Entity	Notation	Specific Agency or Organisation
UN Agency (5) N = 6	PUN#	OHCHR (leading agency), UNFPA, UN Women, UNDP, ILO
Government partners (4) N = 4	PG#	Ministry of Labour, Employment, Veteran and Social Affairs, Ombudsman, Commissioner for the Protection of Equality, National Employment Service
Civil Society (8) N = 14	PCS#	Our house, FemPlatz, Serbian Association of Employers, Mental Disability Rights Initiative (MDRI), Iz Kruga, Center for Independent Living Serbia, Forum for Youth, National Organisation of Persons with Disabilities
Other N = 4	PO#	Consultants, persons with disabilities involved in project activities

). As such, anyone who played a role in the project was invited to participate in this study, with particular attention to ensuring the perspectives of key programmatic stakeholders—government, civil society, and UN, were included. Participants were excluded if they were a member of one of the core stakeholders but unrelated to the UNPRPD project. An analysis of participant positionality within each organisation was out of the scope of this study as it sought to understand the model of change introduced by the UNPRPD at the institutional level and the processes behind their tripartite partnership in implementing disability rights in Serbia; however, individual factors that emerged from the data were recognised and shared in the results section.

The UNPRPD project coordinator invited project stakeholders to participate in the study, so to include individuals who worked on the project beyond only those active during the site visit. Participants were all local rather than international representatives of Serbian orgnaisations. Participants were interviewed in this study and labeled with a notation beginning with the letter ‘P’ for ‘participant’, followed by letters representing their organisational affiliation and number in randomised order (see Table 1 below).

The same set of six interview questions was used for all 28 participant interviews, which required a tool well-suited to diverse stakeholders. The Most Significant Change Technique (MSCT; see Appendix A) uses accessible language to prompt reflective storytelling about a given experience with open-ended questions [31,32]. Collecting stories from all participating perspectives involved in the project allowed for a rich understanding of the role stakeholders play in realising Article 12 and Article 6 CRPD from this project. The first two questions were designed to gather contextual data about the interviewee’s institutional role in the project and how they came to be involved with the UNPRPD. Next, the heart of the interview prompts the participant to think about activities that felt valuable, asking, From your point of view, describe a story that illustrates the most significant change that has resulted from the UNPRPD projects in Serbia at this phase of implementation. In total, 15 of the 28 respondents shared specific stories, and the remaining participants provided an overall reflection of multiple actions or strategies implemented by the UNPRPD project that resonated as significant. Following the story or reflection, participants were asked about the underlying processes that enabled that change and what made their chosen story so significant. The interview concludes by asking how the UNPRPD contributed to the process and to the desired changes (see Appendix A for the full questionnaire).

This study used the Interpretive Phenomenological Analysis (IPA) to analyse the data. In line with IPA procedures, all 28 interviews were read multiple times and individually reviewed before applying an inductive analysis of responses relevant to the research question. In this way, when all findings were highlighted, they were then organised into categories. The MSCT questions were targeted to inquire about the UNPRPD project, resulting in categories that lined up against the UNPRPD programmatic ToC. Only after clustering responses into emerging patterns was a taxonomy introduced, thus holding any interpretation of the content until after the data were clustered. For example, participants shared stories of government attendance at civil society events on the topic of legal capacity for the first time. Such stories of new stakeholder engagement as a result of the UNPRPD project were categorised together and assigned the thematic label Multiple Partners. This title was selected from the language used in the UNPRPD Programmatic ToC to align results with the activities designed to trigger a deeper level of change to better understand the programme from a process perspective. The combination of MSCT and IPA allowed for open, generative results beyond typical project metrics (such as the number of workshops held, or assessment of existing policy) from multiple perspectives while maintaining focus on the research question.

4. Results

The 2016 UNPRPD Strategic and Operational Framework [4] outlined their ToC describing key factors involved with triggering change at the national level towards realising disability rights. Some of these factors reflect emergent themes in the data and provide the headings below, concluding with one additional unique theme (Section 4.4; See

Table 2. Research findings categorical definitions against the key factors in the UNPRPD ToC.

Theme	Definition	UNPRPD ToC Key Factors
Coalition building Inception event	The UNPRPD programme aims to align previously siloed stakeholders, such as government ministries and OPDs, to a common goal through the UNPRPD project pillars.	Lever of change
Multiple partners	Project partnerships, including but not limited to the UNCT, government, and civil society.	Key actors
Rights holders Focus groups Mentorship	Persons with Disabilities and their representative organisations; CRPD Article 4.3	Key actors
Innovation	New theme, not included in the UNPRPD Toc but emergent from the data	NA

). Recalling the research question, ‘Has the UNPRPD programme triggered the structural change in Serbia, and if so, how?’ findings are organised by coalition building, multiple partners, rights holders, and innovation. Coalition building refers to the collaboration between stakeholder groups, with particular attention to the project’s inception event. Multiple partners reflected the process of strengthening stakeholder capacity and relationships. Rights holders were involved in stories of significant change as a result of the participation of persons with disabilities, including from focus group activities and the peer mentorship program. Finally, innovation was cited in participant stories as part of what made the project significant, novel, and in itself a change. The findings provide a process narrative of change from the perspective of project participants.

4.1. Coalition Building

Five of the fifteen interviews that responded with specific stories reflected on the engagement between project partnerships such as meetings, focus groups, and other project activities that bridged previously siloed groups key to legal capacity reform, particularly when government officials were in a shared space with OPDs and civil society organisations specialised in a legal capacity. The five stories depicted either working group sessions or the project inception event, suggesting multiple partnerships between key stakeholders identified by the UNPRPD had a noteworthy and positive effect on driving the targeted changes.

The UNPRPD began with strategic steps to establish the working group before pitching ideas for the project pillars. A participant from the UNCT reflected on the step-by-step process. PUN3 shared:

First we found out who was working on the draft and the minister appointed to work together, which at that point did not include civil society. There was no indication that they wanted to amend the part about legal capacity because the main agency working was on children’s rights—the train had already started leaving the station, so we recognised the momentum. Then we insisted to bring to the table other stakeholders in the area: the Ombudsman of protection, DPOs (OPDs), CSO, and mental disability rights initiative.

After connecting with the ministry for involvement in the project, the UNPRPD project ensured civil society was introduced before formally proposing project priorities. Engagement started slowly with incremental invitations across partnerships. While inviting members to join the working group, their participation helped construct the direction of the project toward targeting legal capacity based on participating expertise. Next, OHCHR outlined the support they would provide for amending the legal capacity component of Serbia’s Family Law in a meeting with the leader of the working group, making a compelling case for this project over child rights based on the UNCT and civil society expertise available to implement the work. Based on the strategic discussions among key actors, all parties agreed to prioritise legal capacity as the main pillar of work for the UNPRPD project.

The UNCT reinforced the UNPRPD operational requirement to include representative disability organisations during the development of the working group. Some members of the UNCT worked in CSOs for IDD and legal capacity before joining the United Nations; thus, they were aware of the local expertise available to invite into the project during the early design stages. The UNCT proposed the project with known contacts, in-depth knowledge of legal capacity, and a roadmap of what could be achieved with the available resources, as opposed to an abstract proposal to such a complex issue.

As the project scope began to narrow towards addressing legal capacity, all of the engaged partners and additional stakeholders were convened to discuss the proposed activities within each pillar of work. Gathering members from different partnerships into a conversation about legal capacity was said to be the turning point for key partners. PUN3 continued:

We worked on one big closed event to only discuss the legal capacity part, which turned out… more than 20 stakeholders and other institutions from the province and republic level. So, I think that was the point where the leader of the working group and the leader of the ministry realised how important it was to so many groups and felt the pressure from civil society—and (they) made a public commitment to address it. Then we had another meeting to actually draft it. Now we are waiting for the final draft to go up (for) public discussion—the last step before the law will be adopted.

The turning point was not a single, magic moment in which legal capacity was amended or the project no longer required engagement. Rather, it was seen as the early commitment to pursue ongoing work towards amending Family Law to align it with the CRPD.

There were several stages of engagement to implement the project as the UNPRPD programme design intends. Participant PUN4 shared, ‘…they were not aligned with the CRPD principles. Maybe not ready to work together. So, I think for me, the biggest achievement: now we are much more working on the same goals. UN, civil society, and government bodies.’ Thus, the UNCT had to simultaneously align the work to a rights-based framework as mandated in the CRPD while continuing to facilitate discussions around legal capacity reform. The significance of these conversations was not limited to legal capacity but also noteworthy by bringing new, unfamiliar groups into the same room to address mutual assumptions and disability stigma. Participant PUN1 recalled:

(The) most vivid example in my mind was fights we had at the first meeting between civil society representatives and national employment services. They were fighting, contradicting, doing damage to persons with disabilities (saying things like) ’they do nothing’, things like that. And now, I see them without our involvement, they have cooperation on other different projects. So, they respect each other now as partners, and they work together and contact each other.

Arguments revealed misunderstandings between stakeholders, which the UNCT could then openly discuss to increase system awareness between groups. Many of the stakeholders had not worked together on a joint project before the UNPRPD; thus, interagency meetings with the UN as a key connector served to promote the value of each stakeholder and bridge participants in a new way. The same participant continued to describe misunderstandings between partners and their affiliated structures, stating, ‘They didn’t know about subsidies and support the government was providing. There is support, maybe not the best support, but there is support (such as), adaptation at the workplace, and subsidies for salaries. They have subsidies.’ These misunderstandings revealed a mutual misperception of each other, whereby CSO and persons with disabilities were unaware of the available subsidies and services, and those providing the services assumed persons with disabilities were not willing to join the workforce. PUN1 identified the storming conversations that unraveled the long-held assumptions behind employment barriers as most significant, particularly as the clarity and awareness of each other were felt throughout the project implementation that followed. They shared, ‘This was individual change, but after the dissemination activities, and they worked with some other organisations, they shared this level of thinking and understanding, so it multiplies.’ This is an example of how the UNPRPD transitioned from implementation activities to structural change. The UNCT recognised the impression groups had of one another and seized the opportunity to address the underlying relationship, resulting in a more willing and cohesive partnership.

Some participants were more conservative about the perceived progress between groups than the participant above. PUN1 described specific misunderstandings that could be resolved through a clarifying conversation, whereas the more abstract barriers between stakeholders remained an ongoing effort. From a different perspective, PUN2′s story described moderate change after consistent engagement throughout the project activities:

(We had) several meetings and forums since inceptions, various steering committees, working group meetings, and some events organised by other projects. We had a conference at the beginning of the project marking 10 years of CRPD, and 70 years of human rights. And these different occasions to discuss these issues, all the time, we based our activities and leadership on the CRPD. And we were trying to convince them that this is the road that we should follow. And convince them that we have to work together, and now we are somewhere in the middle, but they have to work together to make real change and make it sustainable.

Across the stories of partnership building, engagement did have some immediate results but was not limited to the start of the project or the initial invitation to participate. The UNPRPD project in Serbia made engagement an active part of each meeting. The CRPD was embedded in that process, working in multiple ways to align the participating members, become familiar with the obligations of the convention, and aim to increasingly secure a commitment to disability rights amongst the group.

As discussed in previous sections, the UNPRPD ToC key mechanism is the tripartite approach of partnerships between governments making decisions, the persons subject to those decisions and their representative organisations, and technical expertise. In reality, the partnership approach comes at varying levels of readiness. For Serbia’s project, the technical capacity was available, known, and engaged. Resource availability and mobilisation are different issues to the perceptions of the OPDs and experts with IDD or their role in projects. The UNPRPD was not the first effort to legitimise disability expertise in Serbia’s development work; however, it did contribute to formalising a participatory approach. In this way, participation and legitimisation of OPDs and persons with disabilities were both a strategic operation as well as a project outcome.

4.1.1. Inception Event

Whether the conversations around specific or abstract barriers were noted as significant, the project inception event struck all participants who mentioned it as a very positive symbol of progress. It served several purposes in addition to the declaration of the shared commitment to legal reform as the primary pillar of the project. The event was seen as memorable due to the diverse range of people in attendance. PUN2 described:

The launch of the project (was a) large expansive conference with head of UN, heads of OPDs, heads of CSO, the Ombudsman office, governments; 250 people from all parts of the project. This was our inception event this was the only way. First of all, we needed to celebrate the 10 years of CRPD. We needed to review the CRPD in the country and reflect to see if it has been implement(ed). We need to motivate and bring on board (the) Ministry of Labour. We need approval from the line ministry—we needed them to say, ‘it’s ok for you to do that’. I would say it wasn’t an illustration of change, but it was very interesting.

This participant recognised the essential role the government played in the implementation of the project. The UNCT proposed to amend Family Law; thus, one measure of success was in the hands of another stakeholder. The UNCT does not have the state authority to pass amendments and required government cooperation. In other words, government commitment to the project did not guarantee the implementation of activities. As such, the inception served to continue solidifying additional buy-in from key stakeholders even after the project was decided and underway.

The concept of what constitutes change appeared at the end of the previous quote. The storyteller did not consider the inception design, purpose and event as change; however, they continued by sharing the novelty and response to the event as significant:

(This event was) the first ever—I can testify to this—discussion among all stakeholders about legal capacity reform. The UN was the convening party. (It was the) first time the Ministry of Labor actually came into the panel to present their vision…and what has been drafted to this point. Then all experts, academic, UN, CSO and DPOs (OPDs) were all there representing all disabilities. It was, for me, for someone doing legal capacity work for 7 or 8 years. This was the first time in Serbia that legal capacity was tackled, but in a participatory, inclusive and transparent way. (The event) lasted for several hours, and everyone left happy… The advisor to the minister, he said ‘I am shocked’, because he did not envision legal capacity at all. He said, ‘you shock me. Please put it on paper.’

The event resonated with key actors in the ministry, which was previously identified as an important aspect of future uptake. The persistence in stakeholder engagement was a point of achievement and enabled something novel, whether or not it was perceived as change. PUN2 shared:

Everyone felt they were a part of something that was never in Serbia before. (The) UN kept track of everything that was said. Everybody was there. And everyone congratulated the UN for keeping the story alive. This story would not have been kept alive. It might have been done in a closed office in the ministry without anyone knowing and perform some public discussion with no impact. And we compiled the inputs and notes, and made a policy document and sent it to the ministry. Then we kept talking with them. For me it was such a big step forward, because it had never happened before. There was no interest in changing the law, and even smaller chance that it would align with the CRPD, and then communicating it with other stakeholders (social care, representative of judges—everyone was there). That has never happened before. I was proud because it would never have happened without us. I felt it was our obligation. No one else was doing it, and no one else could have convened all the partners. So, for me, that was one moment I would circle as an illustration of what we are able to do with joint forces, with focus and expertise.

As the story begins to wrap up, the participant detailed the role of the UNCT in managing the project throughout different stages of work. ‘Keeping the story alive’, was the difference between action and plateau, handled through timely documentation and managing the stakeholder connections to facilitate the maintained engagement and commitment to amending Family Law. While the storyteller themselves said in an earlier passage they had been working in the area of legal capacity for many years prior to the project, the UNPRPD propelled the existing capacity and mobilised a network of actors into a formal initiative.

The end of the participant’s story looks beyond the scope of the project and on to Serbia’s ongoing disability inclusive development. Each focal point exists within a larger structure with a variety of responsibilities. In particular, the UNCT has a long history and several lines of work with government ministries and introduced civil society as key partners starting with the UNPRPD activities. The relationships cultivated within the project were reported to surface outside the project limits:

We (initially) reacted to a lot of negative reactions from the country… And we are now involved in drafting the national disability strategy. 3 years ago, a new National Disability Strategy was drafted, and it was the baseline for the new PRPD project, but (it) never got adopted. But we got the project. In the course of the project, we could build the connections with all the partners to help facilitate the new National Disability Strategy. UN is leading the way and securing the participation of civil society, and new national anti-discrimination strategy has a huge disability part. We are hoping to change the law in a matter of a month, then a strategy in the year.

Just as relationship building led to broader awareness during implementation, the UNPRPD partnership approach and inception created a ripple effect, extending the commitment to disability rights beyond the scope of the project. Participants felt several activities led to wide-ranging and sustainable impacts through the reinforcement of engagement, alignment to the CRPD and broad invitation to relevant stakeholders, making the problem more visible to key decision-makers through inception activities.

4.2. Multiple Partners

Participants shared stories of significant change in both stakeholder and individual levels of engagement. The next section focuses on the eight stories of direct engagement with project recipients, such as focus groups with individuals with disabilities and their families regarding legal capacity, a mentorship programme, and engagement with the general public.

The UNPRPD project recognised the need to bring persons with IDDs into the process across all activities. UN agencies partnered with local CSO and OPDs involved in the legal capacity rights of persons with disabilities and hosted focus groups to gather direct input. Four of the stories in this section reflect on the importance of these events and the significance of the response from persons with disabilities and their families. When asked about a story of significant change, one CSO representative shared a conversation they had with parents regarding concerns about retaining their adult child’s legal capacity. Parents shared fears around the vulnerability of persons with IDD to punishment for criminal acts the person may not have been aware were violations of the law, risks to financial independence, being taken advantage of, and similar worries. Parents understood the removal of legal capacity as ensuring freedom from potential repercussions by the state. While participants shared the parent’s concern and desire to protect their adult IDD child, denying legal capacity also came with fears. Parents reported feeling it was their only option to remove legal capacity and were interested to learn more about alternative protections from the focus group sessions. PCS5 said:

They were asking really practical questions. What should I do if an old lady wants to marry my son and take his house? We then talk about what alternatives are there. The CRPD has this, but you have to put it in every specific question they ask. Which can be difficult. … People have a lot of fears that are not completely grounded. Sometimes you offer them… what is already present, because deprivation of legal capacity is not protecting them … We go through the academic papers and these processes, and that takes significant time.

Much like the misunderstandings between stakeholders discussed in Section 3.1, the same was true for the individuals and families interacting with the various protections and legal systems in Serbia. The project worked to translate the rights enshrined in the CRPD by using scenarios brought in by focus group participants. Communicating in an accessible way and in terms specific to the parents of rights holders was seen as an important step in the process.

Conversations went beyond the scope of what legal capacity entails and further into the general meaning of rights in other focus groups with both parents and rights holders. As mentioned in Section 2.1, substituted decision-making and ‘best interests standard’ are not compliant with Article 12 CRPD and must be reformed to include input from people with disabilities without judgement of those preferences. Human rights are not intended to protect an individual against making ‘bad decisions’ and, in fact, allow for human judgement. This understanding of legal capacity was noted by another participant as they reflected on a story from a focus group with a parent and adult child with IDD. They spoke about the right to vote, not predicated on whether the vote was informed. PG4 shared from the focus group:

She asked the girl with autism if she would like to vote, and she said ’yes’. (When we) asked for who, and she said the current president. When asked why, she said, ’well because he has a nice suit’. We talked about how that is not a worthwhile reason. And she (the person with autism) pointed out many people vote based on who is handsome and whatnot. (The personal reason behind the vote) is not that important, but it is important that they know about that right and that they want to vote.

Notions of protection and freedom to participate in civic activities were used for focus group members to discuss the meaning of rights more broadly. The focus groups were opportunities to discuss the nuance of what rights mean in different circumstances that would go hand-in-hand if recognised as equal before the law.

4.3. Rights Holders

Up to this point, participant stories have reflected on strategic engagement and awareness raising as a process of implementing project pillars, particularly between previously opposed groups. In addition to systematic changes, or changes to how things are done, several participants noted the impact on rights holders directly through the practice of including persons with disabilities and their families during the implementation process. The project engaged individuals with IDD in two primary activities: a discussion of legal capacity reform (primarily in focus groups) and a peer mentorship program for women with disabilities. Both were cited in response to the most significant change question.

4.3.1. Focus Groups

Including persons with disabilities as project contributors, or valued partnerships within the project, was in itself a practice of realising human rights during legal capacity reform efforts in Serbia. PCS14 spoke of the focus groups and the effect they had on participants with IDD:

They were very excited and very interested to participate because it is a lot for them to get some more significant position in this society. So, they were in a position to be recognised in the same way as other citizens who are asked to tell something about themselves. It is a big, important thing for them to be invited somewhere to talk about themselves, personally. Not that they have somebody to talk for them. And they have something to say, obviously.

Activities where individuals with IDDs were directly involved with providing input to the development of the primary project pillar were seen as both atypical to promote individuals deprived of legal capacity to active voices, as well as reciprocal in benefits for both the UNPRPD project progress and the individuals’ capacity to know and advocate for their rights. Building the capacity of self-advocates in Serbia was not an explicit activity targeted in the project; however, the awareness-raising process and conversations with rights holders were brought up as some of the most significant changes, as well as in other areas of several interview responses. Further, individuals with IDDs were reported to feel immediate improvement from the act of inclusion. PCS10 shared in another focus group for women on the issue of SRH and GBV:

…it has already had some benefit for these women because they are very rarely asked to give their opinion. It was good they realised they have a right to share their thoughts—it has had some psychological impact. It was good for these women’s psychological senses, and we developed some cooperation with these organisations in different towns.

A partnering CSO hosted a focus group and proceeded to engage other CSOs outside of Belgrade to expand the scope of their conversations after recognising the impact of sessions for women with IDD. Many of the activities were quickly scalable by civil society without the support of the UNPRPD. Therefore, while the UNPRPD was working to amend Family Law at the national level, the civil society expanded conversations with individuals with disabilities about rights beyond the capital, where project activities were primarily located. As such, this story shows the ongoing commitment held by some project partners to scale their role in disability rights beyond the mere completion of project activities.

The psychological relief felt by focus group participants is at the core of human rights practice. Persons without disabilities ought to be in positions of authority to reform policy, but they also have a rich history of having their rights upheld. Due to the imbalance of power, it is more than the development activities behind realising the CRPD that make it profound, rather it is the moments whereby persons with disabilities were being recognised and treated on an equal basis to others. In this way, the project was rolled out with a strategic, two-year implementation plan that drew some immediate changes through the inclusive processes behind various activities.

4.3.2. Mentorship

The psychological relief mentioned in the previous section was significant due to the participant’s lived experiences with abuse and violations of their human rights. Due to the myriad of barriers facing women with disabilities, the UNPRPD piloted a peer mentorship programme with a local women’s organisation. The reality of these rights violations surfaced in some of the conversations between an institutionalised resident deprived of legal capacity and their mentor. PCS12:

Without disclosing something private, the mentee and I had a very complex and difficult process…Many topics were brought up, and it was work to overcome several obstacles for their living and development. Their life. (I spent) time with them and conversation. It was hard. There were emotional moments. We were scared. We were thinking what could we do when we continue, and what they can get from us in such a complex situation. The best thing was the two of us were a team, and we supported each other, and that gave most of the results.

Initially, the mentorship approach seemed too small an intervention to combat the barriers of life under the Family Law restrictions. Despite the limitations of what the pilot could and could not do, this story was seen as an example of meaningful change to expectations. Once the relationship became less about fixing and more about the support and connection of mentorship, the design value was able to surface and strengthen the engagement:

It was difficult to accept the line, the limit (of what a mentor can do). But when you manage to do that… they do not feel threatened and they do not have the feeling we (have) given up on them.

Accepting the line’ as the participant said, was an important step toward optimising the potential of mentorship. Not all activities were intended to directly amend Family Law, but rather grow the capacity of local self-advocates in support of a sustainable social shift.

4.4. Innovation

Many of the participants, in their stories of change, reported thinking in a new way, innovating, changing direction, and reimagining a nation with support services rather than institutionalisation practices. This was true across levels of action, including individual perceptions of disability, standard processes between government and UN, pathways to enact change, engagement, and interaction. Deprivation of legal capacity remained an issue in Serbia despite challenges from four distinct international regulatory bodies and civil society advocates calling for national reform outlined in Section 2.1. Participants felt the UNPRPD project was an opportunity to do things differently than what had been done in the past. PUN6 shared:

I think that sometimes in our everyday life and work, we are all the time ruled by regulations and structures and how things were previously done. I think the project actually showed us we shouldn’t knock on the doors that are closed. The reason why this stands out—it taught me some things cannot be done in one way…

This participant saw beyond the project activities and into the systems that surround them, making the status quo and underlying processes more transparent. As such, awareness made space for intentionally changing direction. Traditional approaches to disability rights implementation were unsuccessful as the project launched in Serbia, so while they were changing the operational approach by including OPDs and experts with disabilities, participants also began to rethink norms. Some interactions with persons with IDD and their families brought a greater awareness of disability stigma and ableist paradigms. One representative from the UN shared a moment that triggered her own rethinking:

I had an opportunity to meet people in institutions and (some parents). What was very striking to me was a mother who has a daughter (with IDD)… And the mother showed she really has to think outside the box. For example, when her child has the desire to be in love, but she is just imagining this love, and the mother has to let her just imagine and talk to her. For her intellectual experience, it is better to let her feel that love. It is very encouraging and brave of that mother.

The participant continued to reflect on the assumptions about persons with IDD that perpetuate exclusion despite their concerns posing no threat, outside of breaking normative expectations. Questioning old paradigms of disability translated into communicating the implementation activities from a new, positive frame. PUN6 felt a change in tone was effective in engaging the non-disabled stakeholders sharing:

Sometimes you have to find ways to talk about serious topics. If you organise a workshop on sexual and reproductive health or gender-based violence, no one shows up. We have to have innovating ways, and that is good because then you include more people, and no one feels you are targeting them. We didn’t approach this topic from the negative—what is not working. All these NGOs when they start talking about problems and what is not working in the country by people (we) all know. But this came from a positive tone—what can be strengthened.

Just as the UNCT and OPDs persisted with the engagement of government stakeholders over the project lifecycle, key actors in the project recognised aspects of conventional development activities that created barriers to broader engagement and uptake. Legal capacity deprivation and multiple marginalisation on the basis of disability were brought into the conversation as generative, dispelling the idea of an unchangeable status quo by spotlighting the value and momentum possible from participating in project activities.

Finally, the activities also introduced new processes and technology that had not been used previously. Civil society and UN Women were working on outreach and growing their connections with the Serbian community. Social media had not been utilised due to inaccessibility, limiting their outreach. The team sought solutions to make use of major networking channels such as Facebook to promote and educate the public about women with disabilities from a strengths-based perspective. PUN6 explained:

Because of the budget, they found an app that can make things accessible so she is trying to make a post accessible to them… This really opened to many different angles of how you can improve everyday life. Again, it is a small thing, but you want to be open to new options.

The project team used accessibility practices to model and include more members in their outreach. Thinking outside the traditional accessibility services, such as captioning, and towards low-resource and easily implemented technologies work to mainstream participation regardless of activity or target population. The participant reflected on what was seen as a ‘small change’, and it shows more inclusive thinking from all ends of the project.

5. Discussion

The UNPRPD project in Serbia primarily sought to amend Family Law in recognition of individuals with disabilities (primarily IDD) as equal before the law, thus triggering a cultural change and piloting a peer mentorship programme for women with disabilities. It also sought to strengthen the capacity of civil society and government participation in disability rights implementation through partnerships and project activities. Delivering activities at both the root and lived experience of disability exclusion with such a stigmatised population required deep engagement and new ways of thinking.

Members of the UNCT used their knowledge and established momentum from local organisations to drive project pillars by shifting the attention from children’s rights to legal capacity with a strategic set of activities. The presence of OHCHR and the accompanying technical expertise of the CRPD and legal capacity not only made use of the CRPD Committee recommendations but also the social networks among human rights professionals in the country. Within a strict two-year timeline, Serbia’s local experts were positioned to support engagement and persuaded the redrafting of sensitive legislation. These careful strategies illustrated what reform would look like in practical terms. The combination of knowing the history of the selected issues, ideas on how to proceed with the UNPRPD support, and simultaneously developing early steps to initiate future reform, all while being open to rethinking unsuccessful norms and processes, made the UNPRPD project in Serbia effective in the eyes of participants.

Importantly, the most significant changes revolved around stakeholder partnerships, as the UNPRPD ToC outlined, but more specifically, stakeholders that bridge across lines of expertise. Section 2.2 touches on Bourdieu’s theory of ‘rules’ by which things are done. Prior to the UNPRPD project in Serbia, the longstanding efforts to reform legal capacity were advocated for in stakeholder silos, and recommendations on intersectional discrimination on the basis of gender and disability were outlined with generalised guidance. These cycles were interrupted through relationships, or social capital, bridged by the UNCT. Expertise was not divided by the strengths of each institution as the ToC broadly intended, whereby OPDs infuse the disability lens, UNCT with programmatic expertise, and governments with national leverage. Instead, the UNCT had previous engagement and knowledge in the area of disability and legal capacity, the CRPD, as the core implementing body, resided with OHCHR and personal connections. Likewise, civil society participants had rich human rights and CRPD expertise. This type of partnership is difficult to establish at scale for a global programme but underlaid the significant changes reported across the project. Further, the familiarity with persons with IDD and their representative organisations within the UNCT contributed to a novel and participatory design. While it upholds the critical role the United Nations can play in supporting countries to trigger legal and normative change toward the CRPD, it prompts reflection on whether or not the project would have had the same successes if different individuals were participating on behalf of the UN, even within the same agencies.

The project concluded on 31 December 2020 with the new disability strategy and Family Law amendment drafted, however without formal adoption. As of December 2022, they continue to await enactment by a new Ministry for Human Rights and Social Dialogue that replaced those engaged in the project. Serbia was selected for a new project from the UNPRPD in 2022 [33], led by UN Women, and activities are yet to be determined. Given the most significant changes were the result of key actors with a shared vision and the UNCT ‘keeping the story alive’ through activity-based engagement between stakeholders (Section 4.1.1), individual turnover and a two-year lapse in project support will require more research to fully understand the impact on pending initiatives.

6. Conclusions

Based on the findings of this research, it can be argued that the UNRPPD programme has triggered change in coalition building and engagement of key actors, as well as the direct participation of persons with disabilities in the project. These are considered levers of change at the structural level according to the UNPRPD ToC and Article 4.3 CRPD, though they have not resulted in the type of impact outlined in the ToC. Normative reform and realisation of Article 12 and 6 CRPD in the daily lives of persons with disabilities remain antiquated in Serbia after the two-year project timeline. This is not to say future reform will not reflect on the UNPRPD project as a critical milestone, and it may prove to have been essential for future countries to model from when these rights are finally realised.

Previous research shows the UNPRPD programme largely supported projects that fall within UN Agency specialisations, and while the OHCHR expertise in Article 12 CRPD and the Convention at large were core to the project, equally so were their relationships with civil society involved in legal capacity activism. This finding needs more research to better understand how the degree of relationships at critical stages of project alignment and implementation play a role in realising the rights of persons with disabilities as a result of UNPRPD projects. For example, are there differences between projects where partnerships with civil society and OPDs were established before a UNPRPD project versus after?

Due to the contextual differences between countries and projects, studying projects over multiple funding cycles may provide a better understanding of how partnerships change over time. Further research can explore if long-term working relationships reduce misunderstandings between government stakeholders and civil society, which was noted as a key turning point in Serbia, or if there is evidence of coalition building beyond the scope of the UNPRPD project. These and other areas of ongoing study will provide more evidence of how the UNPRPD can strengthen and support change at multiple levels and how to put participation and partnerships into practice.

7. Limitations

Data were collected during one month in Belgrade and did not include follow-up interviews when the project concluded; it is thus a picture in time whilst the project was in progress. Participants were volunteers, and thus, the degree to which self-selection influenced the results is unknown. Further, this is a single case study in one country, so the results cannot be generalised to the diverse range of country projects within the UNPRPD programme.

Participant positionality was not in scope for the project, such as how the role of the participant’s gender, disability status, region, and other such factors impacted the findings. Additional research is recommended to better understand the nested hierarchical impacts within and between stakeholders involved in country projects. Further, the authors of this study are not local to Serbia and, therefore, provide perspective from an external viewpoint.

Finally, the MSCT questionnaire was appreciative and asked specifically about the most significant change. The interview questions did not inquire about all changes, challenges, or barriers. This research aimed to ask about what facilitated positive change and processes that may be insightful for other countries or projects looking to address similar topics.