By Alberto Vásquez
Over a decade, Users and Survivors of Psychiatry Kenya (USP-Kenya) grew from a small, largely voluntary initiative into a highly visible organisation of people with psychosocial disabilities. It connected peer-support groups across several Kenyan counties with national advocacy and international human rights work. It helped reshape conversations about mental health in Kenya and brought the experiences of people with psychosocial disabilities into policy and legal debates at home and abroad. From the outside, it appeared to be a large and well-established organisation, with different areas of work feeding into and strengthening one another.
However, by the time the pandemic struck in 2020, USP-Kenya’s work had already declined considerably. Although the organisation had not formally closed, staff gradually left, and its activities dwindled, with only a small number of restricted projects continuing for a time. That year, USP-Kenya also went through a leadership transition, after which little public information about its activities was available. Its social media accounts remain online but inactive, as if waiting for something.
Recently, someone familiar with USP-Kenya’s work asked me how the organisation was doing. When I explained that it was no longer active, their immediate response was: “What happened?”
This case study asks precisely that: what happened to USP-Kenya, what made its work so influential, why the organisation could not sustain its momentum, and what its experience can teach other grassroots organisations seeking not only to grow but also to endure. Drawing on interviews with former staff, collaborators, and peer-support group members, it traces the organisation’s rapid growth and rising visibility before examining the organisational strains that emerged as its work expanded and eventually contributed to its decline.
From informal support to a rights movement
USP-Kenya was established in 2007 by users and survivors of psychiatry, together with some family members. In its early years, it operated largely through voluntary work. Meetings were held in people’s homes and, later, in spaces donated by churches. The organisation had limited funding and focused mainly on raising awareness of mental health and challenging stigma and discrimination.
Peer-support meetings soon became central to USP-Kenya’s work. They offered people a place to meet others with similar experiences, share information, and support one another. Someone described it as “a place where people could come and belong.” These meetings also helped participants understand their experiences collectively, creating a foundation for the organisation’s subsequent rights-based work.
The shift towards rights-based work deepened as USP-Kenya became more closely involved with the wider disability movement. Around 2009 and 2010, United Disabled Persons of Kenya, the national umbrella organisation of persons with disabilities, invited them to contribute to discussions about Kenya’s reporting under the Convention on the Rights of Persons with Disabilities (CRPD). Through this engagement, USP-Kenya gradually moved from a largely medical and awareness-based approach towards a psychosocial-disability and human-rights framework.
A period of rapid growth
A turning point came around 2012, when support from the Open Society Foundations (OSF) enabled USP-Kenya to begin a period of rapid growth. Its peer-support work expanded beyond Nairobi, and its national advocacy, research, and public profile all grew.
As its network expanded, USP-Kenya supported around a dozen peer-support groups across five counties. The groups helped participants understand their experiences collectively and recognise the social and institutional barriers they faced. They also provided practical support, including information, referrals, and help navigating services. Some combined this work with access to livelihoods, social protection, and community organising. They became spaces where people developed the confidence and skills to speak publicly, engage with institutions, and challenge discrimination.
The groups’ experiences increasingly informed USP-Kenya’s national advocacy. The organisation contributed to debates on legal capacity, supported decision-making, community inclusion, access to justice, and mental health legislation. To advance this work, USP-Kenya collaborated with United Disabled Persons of Kenya and the Kenya Association of the Intellectually Handicapped (KAIH), while also engaging with institutions such as the National Council for Persons with Disabilities and the Kenya National Commission on Human Rights. Research and policy papers helped bring the experiences of people with psychosocial disabilities into legal and policy discussions.
USP-Kenya also filled an important representational gap. At a time when psychosocial disability was still poorly understood within Kenya’s disability movement, the organisation helped create a space for users and survivors in national policy debates. Michael Njenga, who became USP-Kenya’s Chief Executive Officer (CEO) in 2014, was particularly skilled at linking community experiences to human rights arguments. As one colleague explained: “He knew how to articulate our issues.” Other members and collaborators, such as Elizabeth Ombati and Njoroge Samuel Macharia, also gained recognition nationally and internationally as advocates, trainers, and experts.
The pull of international engagement
USP-Kenya’s growing recognition opened doors to international networks and policy spaces. Through relationships with OSF, the World Network of Users and Survivors of Psychiatry, the International Disability Alliance, the World Health Organization, and others, it contributed to debates on the implementation of the CRPD and mental health reform. Much of what USP-Kenya brought to these spaces drew directly from its work with the peer-support groups.
But international engagement also placed growing demands on a very small team. As one person put it, “it changes how you invest your time.” Invitations to international spaces competed for attention with country-level work and with building the organisation’s own structures. International representation became concentrated among a small number of people.
Within the organisation itself, the pull towards international engagement raised questions about priorities. Work on legal capacity and access to justice was important, but some interviewees questioned whether it always reflected members’ most immediate concerns. Those concerns included social isolation, poverty, livelihoods, employment, and access to services. Someone recalled hearing from peer-support participants that they could not “eat human rights” and needed sustainable livelihoods.
Advocacy and material support were not competing goals; both were central to USP-Kenya’s work. The challenge was to sustain them with limited staff and resources while ensuring that the organisation’s work remained connected to the priorities of the peer-support groups.
The strain behind the work
Although USP-Kenya produced strong external work, much of it was carried by what one person described as a “quite lean” secretariat: the CEO, two programme staff, and a part-time accountant, working across community, national, and international levels. Another interviewee recalled that project planning was often reactive, with staff responding to what was most urgent.
Consultants, such as Elizabeth Kamundia and Mirriam Nthenge, carried out an important share of the organisation’s specialised legal, policy, and research work. This contributed to USP-Kenya’s visibility and influence, but it also meant that much of its technical expertise remained outside the permanent team. As new opportunities emerged, there was no corresponding expansion in staffing or internal capacity.
The organisation’s administrative and governance structures also remained underdeveloped. There were gaps in human-resources and administrative policies, while financial management and governance systems remained inadequate. USP-Kenya was expected to operate as a registered national organisation, yet it retained much of the informality of the grassroots movement from which it had grown. In the words of one interviewee, USP-Kenya had become highly visible without building some of the “structures that are foundational for longevity.”
Governance structures that did not keep pace
These structural weaknesses were particularly evident in the board. While USP-Kenya sought to reflect lived experience and regional representation in its composition, this was not always matched by the skills, role clarity, and support needed for effective governance. The organisation had different board committees, but they were not sufficiently equipped to carry out their mandates. For example, some board members were uncertain about their role and expected to participate directly in paid programme activities.
Interviewees remembered the board in different ways. Some saw it as largely absent or disconnected from the organisation’s work. Others described it as demanding but insufficiently prepared, while some recalled it as too willing to defer to the secretariat. Taken together, the accounts point to a common structural problem: the board was not sufficiently equipped to guide, support, or provide oversight of the secretariat. As one person explained, “the secretariat members were more empowered than the board members.”
This became especially evident as funding dwindled and staff began to leave. During that uncertain and difficult period, the board lacked the tools to manage an effective transition. Responsibility had remained concentrated in the secretariat, leaving the organisation particularly vulnerable after staff departed.
Dependence on a single donor
Funding from OSF made much of USP-Kenya’s expansion possible, supporting peer-support groups, policy and research work, and participation in national and international spaces. Although the organisation received small grants from other sources, including government grants, it never developed a diversified funding base and remained heavily dependent on OSF. While OSF was a flexible and accommodating partner, its funding was tied to specific projects rather than provided as core support, limiting investment in the organisation’s long-term development and making it difficult to bring long-term consultants into staff roles.
As funding from OSF declined, staff positions became difficult to sustain, the Nairobi meeting venue was lost, and the organisation struggled to maintain its network of peer-support groups. Some restricted projects continued for a time, but the wider organisation began to wind down.
It was not possible to establish precisely why OSF’s support declined and ultimately ended. Interviewees cited the loss of USP-Kenya’s main OSF contact, shifts in OSF’s priorities, and gaps in USP-Kenya’s financial management systems and capacity, but none of these accounts is definitive. What is clear, however, is that the organisation’s heavy dependence on a single donor left it highly vulnerable when that support ended.
The risks of concentrated leadership
As USP-Kenya’s visibility grew, its external representation and relationships became increasingly concentrated among a relatively small number of people, with CEO Michael Njenga playing a particularly visible role. His ability to articulate the organisation’s issues and build connections with donors, public institutions, and international networks brought recognition and opportunities, but it also placed greater responsibility and pressure on him.
This concentration developed in part from the abrupt leadership transition that led to his appointment in 2014. At the time, Kanyi Gikonyo was CEO and Michael was Head of Programmes, though some interviewees recalled them as effectively leading the organisation together. USP-Kenya was still young and operating on a smaller scale, and this informal partnership had supported its early development. When Kanyi passed away unexpectedly in July 2014, Michael became CEO, but as USP-Kenya expanded, the organisation did not develop a broader, more distributed leadership structure.
The transition came just as USP-Kenya was expanding. Michael had to shoulder a growing range of responsibilities while also coping with the loss of a close colleague. This placed strain on him and exposed a wider organisational vulnerability. During periods when that strain became overwhelming, and Michael needed time away, parts of the organisation’s work slowed or stopped. The organisation lacked the distributed leadership and internal systems needed to ensure continuity.
By the time Michael left in 2020, key relationships and organisational knowledge had not been sufficiently institutionalised, and there was no clear succession plan. The transition exposed how much continuity depended on a small number of individuals and informal relationships. Looking back, one interviewee wondered whether a co-leadership arrangement might have helped.
Michael himself identified the broader lesson: movements often “heavily invest in individuals” rather than institutions, leaving organisations vulnerable when they depart.
The relationship between peer-support groups and the national organisation
Peer-support groups were central to USP-Kenya’s work, providing much of the experience, knowledge, and legitimacy underpinning its national and international advocacy. They also had formal avenues for representation and accountability: they were represented on the board, and annual general meetings gave members opportunities to review reports and ask questions.
At the same time, USP-Kenya encouraged local groups to register independently as community-based organisations. This allowed them to elect their own committees and access local government funding directly. In some cases, that autonomy later helped them continue operating after USP-Kenya’s activities declined. However, it also created some distance between the groups and the national organisation, making lines of ownership and accountability less clear in practice.
As funding declined and activities wound down, some group members felt they were not adequately informed. This concern appears to have been particularly acute in Nairobi, where the group depended on a paid meeting venue. One participant recalled arriving for a regular meeting and being told that the rent for the space had not been paid, without having received prior information about the change. Other groups met in spaces provided by local government and were therefore not affected in the same way. Former staff also recalled that participation often declined once regular facilitation ended.
The arrangement therefore strengthened the autonomy of local groups, but it did not always ensure a strong connection between them and the national organisation, especially during periods of decline.
An ending without closure
USP-Kenya never formally closed or dissolved. Instead, its activities gradually diminished over several years until the organisation ceased to function. It is unclear whether the name is still used by some local groups or whether the organisation exists only on paper. The national organisation described in this case study—a secretariat connecting peer-support groups with national advocacy and international engagement—no longer exists.
Peer-support work and broader advocacy declined first, around 2018 or 2019, while some restricted projects continued until 2021. By then, most staff had already left or moved into other work as funding became uncertain and salaries became irregular or stopped. In 2020, the organisation’s situation was discussed at an annual general meeting in Nyeri County, where new board members were elected. A new CEO was also appointed after Michael left, but these changes did not alter the organisation’s trajectory. The COVID-19 pandemic accelerated the final stage.
As people left at different moments, most interviewees did not recall taking part in a formal meeting or receiving any communication about the organisation’s situation as its activities wound down. Interviewees offered different explanations for the decline: the loss of funding, dependence on one donor, gaps in governance and accountability, concentrated leadership, limited administrative systems, and weak transition and succession arrangements. These factors reinforced one another, leaving USP-Kenya increasingly unable to sustain its activities.
In the absence of a clear final moment or shared account of what followed, a sense of unresolved loss ran across the interviews, and some people remained without clear information about what had happened. That loss was deeply felt because many people had cared about the organisation’s work and had invested considerable time, energy, and hope in it. A shared conversation about what USP-Kenya had achieved, why its work had ended, what remained unresolved, and which responsibilities or relationships still required attention might have offered some closure.
What USP-Kenya left behind
Although the national organisation came to an end, the networks, relationships, and organising it helped foster survived in other forms.
In Nairobi, some former participants remained connected through a WhatsApp group and later resumed monthly in-person meetings independently. The group brings together people with lived experience and caregivers, and functions entirely on a voluntary basis without external funding. The wider network reportedly includes around 290 people, with up to 25 attending in-person meetings. Members have maintained mutual support, raising money to cover medication, bereavement costs, and financial hardship during the COVID-19 pandemic, while preserving much of the meeting format and practices developed through USP-Kenya. As one participant stated: “The legacy is still there.”
Other county groups also continued independently, supported by their own legal identities, leadership, and relationships with local government. Former staff and participants also carried USP-Kenya’s knowledge and advocacy into other spaces. Njoroge Samuel Macharia later formed a new national organisation and remains connected to some former peer-support groups. Michael Njenga, Elizabeth Ombati, Elizabeth Kamundia and Mirriam Nthenge, among others, carried this work into other organisations and into national and international spaces. Others remained active through committees, peer networks, and other organisations. In this sense, USP-Kenya’s legacy is dispersed across many people.
But something important was also lost. Mental-health work in Kenya has continued, much of it focused on counselling, services, and individual wellbeing. What appears less visible is collective, survivor-led advocacy challenging coercion and other rights abuses. Interviewees did not identify a recognised national organisation consistently bringing a psychosocial-disability perspective to CRPD implementation.
USP-Kenya had created a shared platform connecting lived experience, peer support, national policy, and international advocacy. The loss of that space weakened that connection and left reforms it had helped advance without the same level of follow-through.
Lessons from USP-Kenya
For those of us working in Mad and disability organisations, and in grassroots movements more broadly, USP-Kenya’s experience is a reminder that powerful work and organisational resilience do not always grow together.
Growth can be exciting, but it needs to be intentional and supported by investment in people, shared leadership, organisational systems, and a broader funding base. Structures that distribute power, clarify responsibility, and enable accountability are essential to sustaining movement work. Administrative and governance systems also matter because they help an organisation care for its people and protect what they have built. Boards need the capacity to provide direction and oversight, while knowledge, relationships, and responsibility need to be shared so that the work can continue through funding losses, leadership changes, illness, or periods of distress.
External opportunities also need to remain connected to the people and communities from which the work grows. International advocacy can open important doors, but organisations should continually consider how such engagement remains connected to community-based work and the everyday concerns of members and participants.
None of these lessons diminishes what USP-Kenya achieved. It created spaces of belonging, cultivated advocates, and made the rights of people with psychosocial disabilities visible in Kenya and beyond. The fact that former members continue to meet, organise, and carry the work into other spaces is part of that legacy.
During the interviews, people spoke with pride about what they had created and reflected openly on what might have been done differently. We are deeply grateful to everyone who spoke with us for their openness, honesty, and care. The lessons they shared are another part of USP-Kenya’s legacy.
✦ ✦ ✦
Movement Stories is a series exploring how disability activists organise and work for change in different contexts. The aim is to look beyond success narratives and examine the politics behind their work: the strategies, alliances, tensions, and risks that shape it.
Feature image: Members of a peer support group in rural Kenya. Source: USP-Kenya (X/Twitter).