Lizzie Kiama

Through targeted communications, advocacy, and county-by-county movement building of women and girls with disabilities across Kenya, Lizzie is constructing a new public narrative about their full potential, rooted in control over their own sexual and reproductive health, workforce access, and independence in choosing how and with whom they choose to live.

Lizzie’s women-led organization, This-Ability, pursues a bold strategy to transform the public’s perception of what it looks like for Kenyan women and girls with disabilities to live their lives to the fullest while contributing their strengths to the communities around them. She is transforming the visibility, leadership, and inclusion of women with disabilities by focusing on sexual and reproductive health rights (SRHR) as the foundational issue to shift cultural narratives and by developing a core network of women with disabilities who serve as trusted leaders, organizers, and experts, offering support to other women and helping drive change in the healthcare system and beyond.

Lizzie’s insight is that society denies women with disabilities the right to be seen as sexual, desiring, and agentic human beings. Rather than starting from a lens of protection or gender-based violence, she begins with sexuality, pleasure, and choice — reframing how women with disabilities are seen, not as passive recipients of care but as full participants in society. This shift is radical: it unearths cultural stereotypes that suggest women with disabilities should not have children, that pregnancy is an “abomination,” and that their sexual activity must be explained as abuse. By opening unapologetic conversations and linking them to policy advocacy, Lizzie is creating a new narrative — one in which women with disabilities are visible, knowledgeable about their rights, and equipped to self-advocate.

Central to Lizzie’s innovation is Mama Siri (“Secret Mother”), a model that transforms women with disabilities into trusted focal points for inclusion and care within their own communities. Each Mama Siri acts as a connector and problem-solver — linking women to health, justice, and economic services while documenting barriers and insights. Individually, they embody localized leadership and trust; collectively, they form a county-based network that now operates across 12 counties, reaching more than 30,000 women and girls with disabilities. This distributed structure enables the model to grow organically — each Mama Siri anchoring change at the grassroots, while the network as a whole generates the data, coordination, and collective power needed to influence systems and policy at scale.

Lizzie envisions a Kenya where a trusted Mama Siri is present in every community — a woman with a disability who serves as a local focal point for care, connection, and leadership — where healthcare facilities are universally inclusive, where data on women with disabilities is readily available to policymakers, and where media portrays disability not as a tragedy but as a normal dimension of human diversity.

In East Africa, the term “disability” is largely associated with negativity, poverty, and fear. Society has internalized this perception and stigma, which has led to lower expectations and standards for people with disabilities and to their treatment as less-than-full citizens. Such neglect often manifests in superficial solutions designed to meet only the bare minimum — or even less — to “tick a box” and move on. This mindset is passed down across generations, becoming entrenched in cultural norms and institutional practices.

While this stigma affects persons with disabilities broadly, its burden is especially severe for women and girls. In Kenya, persons with disabilities constitute about 2.2% of the population (roughly 918,000+ individuals aged five years and above) according to the 2019 Census, and among them, 57% are female (523,000+ women and girls). Yet these women continue to be invisible in health data, policy frameworks, and program design. Because they sit at the intersection of gender and disability, they face multiple, compounding layers of discrimination — excluded both as persons with disabilities and as women in patriarchal norms. They are more likely to live in poverty, have lower educational opportunities, be excluded from the workforce, and experience disproportionate rates of gender-based violence and denial of reproductive rights.

Leadership also reinforces this status quo. From community-based organizations to national institutions, many decision makers are products of a society that has long viewed disability through a lens of pity or fear. As a result, there is little internal motivation to transform narratives or systems. Despite being a distinct constituency, persons with disabilities in Kenya are rarely prioritized in policy, programming, or budgeting. Because they are not treated as a coherent political or social force, their voices and needs remain marginalized and unseen.

A core obstacle lies in how disability is framed. The medical model predominates, casting disability as an illness or deficiency to be cured. Under this model, people with disabilities are often encouraged to withdraw from public life until they are “healed.” This framing denies the possibility of living with dignity and full agency, and shuts down conversation about autonomy, contribution, and rights.

The charity model is the complementary discourse — portraying people with disabilities as passive, dependent recipients of goodwill. In practice, many charitable or NGO-based interventions reinforce this posture: top-down, short-term, and disconnected from the lived realities of the communities they aim to serve. When people with disabilities are not meaningfully involved in design or implementation, programs risk entrenching dependency rather than enabling autonomy. Media often amplifies this logic, presenting persons with disabilities as objects of pity, inspirational “overcomers,” or burdens rather than as agents, innovators, and contributors.

These dynamics are especially devastating for women and girls with disabilities. In many Kenyan communities, they are presumed not to have sexual agency — not expected to form partnerships, become mothers, or make decisions about their bodies. Pregnancies among women with disabilities may be stigmatized, assumed to be evidence of violation, or met with pressure to terminate. These assumptions frame them as passive, undeserving, or unfit for reproductive life.

The consequences are profound. Women and girls with disabilities are frequently excluded from sexuality education, leaving them without critical information about their bodies and reproductive health. They face stigma, inaccessible facilities, refusal of services, or dismissive attitudes from healthcare providers who believe they should not be sexually active. Such barriers exacerbate their risk of gender-based violence, unsafe pregnancies, poor maternal health, and preventable health complications. Over time, their experiences remain invisible in health data, blind spots in research, and gaps in policy — a vicious cycle of silence and exclusion.

Deep structural and systemic gaps amplify these harms. Kenya’s Persons with Disabilities Act of 2003 is among the most comprehensive frameworks on the continent, mandating rights, rehabilitation, and a 5% job reservation in public and private sectors. Yet compliance is strikingly low, and enforcement is minimal. Even when services exist, they often lack accessibility — in design, communication, physical layout, or cultural sensitivity. Beyond the law, civil society organizations and NGOs have launched inclusion initiatives, awareness campaigns, and targeted livelihood or education programs. While valuable, these efforts are often fragmented, donor-driven, short-term, or narrowly focused. They rarely confront or shift the deeper cultural narratives, structural power asymmetries, and mindset barriers that keep women and girls with disabilities excluded.

The result is systemic exclusion. People with disabilities are marginalized across education, employment, health, civic participation, and social life. But for women and girls with disabilities, the exclusion is deeper: they tend to be unseen, unheard, and uncounted. They are all too often cast as handicapped or helpless, rather than recognized as full citizens with rights, agency, and potential.

To change this reality demands more than service delivery. It requires a radical mindset shift — one that challenges entrenched stereotypes, dismantles both medical and charity models, and positions women and girls with disabilities as leaders and decision makers in their own right. Only then can inclusion become meaningful, sustainable, and justice oriented.

Lizzie understands the creative, problem-solving, and adaptive capacities that often emerge among people with disabilities. In contexts designed primarily for able-bodied populations, people with disabilities are required to innovate continuously — devising alternative approaches, demanding access, and building new possibilities where barriers exist. Lizzie channels this resilience and ingenuity into the design of her strategy. Her approach is structured as an ecosystem where each element reinforces the others, creating a web of support, knowledge, and opportunity for women and girls with disabilities while simultaneously shifting the systems around them.

At the heart of Lizzie’s strategy is a clear theory of change: by unlocking the leadership potential in a group of women with disabilities as trusted leaders in their own communities, they catalyze systemic transformation far beyond what any single organization could achieve. This is the role of the Mama Siri network — women carefully selected for their lived experience, empathy, and leadership potential, who are then equipped to act as focal points for disability inclusion in their counties.

Every woman who embodies the role of a Mama Siri receives intensive training on how to manage a confidential toll-free service — including answering calls, assessing needs related to sexual and reproductive health (SRH), gender-based violence (GBV), legal rights, and referrals — while also learning to record issues, handle confidentiality, and follow up effectively. Each Mama Siri acts as a trusted focal point within her community, the first line of response for women and girls seeking SRHR information, GBV support, justice, or guidance. A typical call involves listening and triage, offering information or emotional guidance, and—where needed—activating referral pathways across health, justice, and protection systems, with follow-up to verify that services were actually accessed.

Collectively, the Mama Siri network now operates across 12 counties, reaching an estimated 30,000 women and girls with disabilities. Yet the power of this movement lies in the strength of each individual Mama Siri. Every Mama Siri serves as the first point of contact for women seeking information, support, or justice — and none of them act in isolation. Each one coordinates with This-Ability’s wider ecosystem of healthcare providers, legal actors, civil society organizations, and government institutions to ensure that referrals from the hotline translate into concrete services.

The impact of this model is visible both in scale and in depth. The Mama Siri hotline has fielded over 30,000 calls under UNFPA-supported rollouts, with common issues ranging from family planning and pregnancy to violence and abuse. In Narok County, for instance, a local Mama Siri has referred multiple women and children to hospital care and is actively pursuing justice for a teenage girl impregnated by an adult man. These cases are more than numbers — they represent women breaking cycles of silence and exclusion, gaining access to care and legal recourse where before there was none.

Equally powerful is the personal transformation of the Mama Siris themselves. Many entered the program shy and hesitant, with little experience speaking in public or engaging with authorities. Through training, mentorship, and exposure to advocacy opportunities, they have grown into confident leaders. Today, Mama Siris sit on county health committees, speak at policy forums, and are sought out by media as experts on disability inclusion. Several have gone on to start their own initiatives, mentor younger women, and even consider running for political office. In this way, the multiplier effect of Lizzie’s theory of change is undeniable: empower a core group of women, and they in turn create ripples of change that shift institutions, transform services, and reimagine what leadership by women with disabilities can look like in Kenya.

Complementing this trajectory is a structured online program that equips healthcare providers with training on disability-inclusive sexual and reproductive health rights (SRHR) while simultaneously strengthening the leadership and advocacy skills of Mama Siris. This dual focus ensures that both community leaders and service providers advance in tandem, reinforcing one another’s roles in transforming local systems.

Healthcare system transformation is a critical component of Lizzie’s work, and Mama Siris are deeply embedded in this effort. Over 200 healthcare providers across 12 counties have been trained through This-Ability’s inclusive care curriculum, which challenges long-held biases and equips providers with the tools to offer respectful, dignified care to women and girls with disabilities. Mama Siris’ lived experiences are at the core of these trainings, making the learning more tangible and applicable. Post-training feedback consistently shows improved attitudes and increased confidence in delivering care to patients with disabilities. Importantly, this work is not limited to individuals: Lizzie has formalized partnerships with two public hospitals, turning these facilities into centers of excellence for inclusive sexual and reproductive health services. This institutional approach embeds inclusion into hospital policies, patient flow systems, and staff onboarding processes, making it sustainable over time.

The strategy has evolved to move beyond individual training sessions toward systemic transformation of health facilities. This means creating environments where inclusion is no longer dependent on a single champion but is hardwired into the way care is delivered. Lizzie envisions each facility becoming a model that others can learn from, creating a ripple effect across the public health system. By documenting lessons and outcomes, she is building an evidence base that can be used to influence national health policy, ensuring that inclusion is prioritized in budgets and programming.

Technology supports Lizzie’s ability to grow her impact while keeping relationships anchored in community. She created Hesabika, a USSD (Unstructured Supplementary Service Data) platform — a text-based mobile system that does not require a smartphone or Internet access. Through Hesabika, women and girls with disabilities can register and self-identify, creating visibility for a population that is largely absent from official data systems. The aggregated information helps identify geographic gaps in services and informs where community-level efforts, including those led by Mama Siris and partner organizations, may be most needed. By complementing person-to-person support with data insights from the platform, the model maintains local connection while expanding reach. The Hesabika platform has also become a vital communication channel during public health campaigns, enabling real-time dissemination of information to women with disabilities across multiple counties. This visibility and two-way messaging shift women with disabilities from being overlooked to being recognized as an active constituency — offering government and partners an invaluable window into a group that has historically been “invisible” in planning and policy.

Advocacy is another key pillar of Lizzie’s strategy, building on the insights and data generated through Mama Siri interactions and the Hesabika USSD platform. Civil society organizations and women with disabilities are prepared to engage effectively with decision-makers, form alliances, and articulate their priorities on disability inclusion. These advocacy efforts focus on four key policy areas: inclusive health services, economic empowerment, protection from gender-based violence, and representation in decision-making spaces. As a result, several counties have begun allocating funds specifically for disability inclusion in health programming, and partners like UNFPA have adopted their strategies to integrate people with disabilities more systematically. The Ford Foundation and other international funders have also shifted their frameworks after working with Lizzie, embedding disability inclusion as a non-negotiable element of their programs.

Lizzie’s influence extends well beyond her immediate programs. By offering evidence, solutions, and partnerships, she is showing institutions what inclusive practice looks like and making it easier for them to adopt. This is particularly critical in a context where disability has long been treated as a side issue. She reframes it as central to achieving broader development goals, from gender equality to universal health coverage.

Looking ahead, Lizzie envisions expanding the Mama Siri network from 12 to all 47 counties of Kenya, ensuring that every woman and girl with a disability has access to a trusted local leader. As the network grows, more women will register on the Hesabika platform, generating richer data that drives even more targeted advocacy and programming. This creates a virtuous cycle where growth fuels insight, which in turn fuels stronger systems and deeper inclusion. She is also cultivating a younger generation of Mama Siris, making the movement relevant to adolescents and young women, and ensuring leadership continuity for the future.

Lizzie’s approach aims to change how systems recognize and respond to women with disabilities, rather than offering support in isolation. Each component reinforces the others: interactions through Mama Siri highlight practical barriers and gaps in service delivery; these insights guide adjustments in training and partnerships across health and community services; improvements in service responsiveness encourage more women to register on Hesabika; and the resulting data helps Lizzie and her team identify priorities and refine their approach over time. The model operates across personal, community, and institutional levels, creating feedback loops that strengthen accountability and responsiveness. Through this, Lizzie is contributing to an environment where women with disabilities are more visible, better connected to support, and able to exercise their rights.

Lizzie grew up in a middle-class family in Mombasa, Kenya, where she thrived in school and extracurricular activities. Until the end of secondary school, she was a highly active girl — excelling in sports, drama, and creative pursuits — and enjoyed the full freedom of her abled body. After finishing her secondary education, she got an internship position at Kenya Commercial Bank (KCB). Two months into the new job, Lizzie was involved in a car accident that changed her life. When Lizzie regained consciousness, she found herself adapting to life after the amputation of her legs. For a very long time she did not associate herself with the label of “disability.” Because her accident happened to her when she was 18 years old, she was also just learning about her sexuality. Her mother was very sensitive to this and encouraged Lizzie begin dating again and not view her disability as a ‘death sentence’ which would prevent her from ever finding love and family.

The delivery of her first child was also a traumatic experience. Her mobility was compromised again, and she could not walk without support. She had mixed feelings of happiness for being a new mother and sadness because her body was failing once more. With the need to overcome this complexity, Lizzie started reading about women with disabilities and disability rights. She wondered, why hadn’t she wanted to associate and identify as a woman with disability? That was the moment when Lizzie started identifying herself as a woman with a disability and wanted to understand the negativity around this terminology. Lizzie did research and contacted several organizations for people with disabilities in Kenya until she was accepted for an internship at the National Council for Persons with Disabilities as Job Placement Assistant helping people with disabilities to find jobs. In 2013, while working at the National Council for Persons with Disabilities, Lizzie was accepted into the Women’s Institute on Leadership and Disability (WILD) program by Mobility International USA. Through WILD, she was exposed to adaptive sports in Oregon, including wheelchair rugby, and recognized for the first time that disability could be a site of strength, not limitation. That experience inspired her to launch the Women & Wheels project shortly after her return: organizing wheelchair rugby workshops that included both women with disabilities and non-disabled peers, combined with workshops on SRHR, leadership, and empowerment.

It was in Women & Wheels that Lizzie saw the painful gaps in Kenyan society: how women with disabilities were excluded from everyday sports and public life, how their sexual and reproductive health needs were ignored, and how even in private sector discussions, disability inclusion was reduced to questions like, “Do you have a database of PWDs we can hire?” This combination of adaptive sports, visibility, and gendered conversations led her to experiment with media, photo campaigns, and menstrual health advocacy — such as provocative campaigns that featured women with disabilities in advertising to challenge media invisibility, provoke public dialogue, and bring companies’ attention to this demographic of their customer base.

Through these initiatives, Lizzie began to understand that impact required shifting not just policy, but culture: that art, sport, storytelling, and business all had a role in changing how disability is seen. Ultimately, she recognized that the for-profit consulting model limited her reach into SRHR and community organizing, which pushed her to transition This-Ability into an independent non-profit model. The non-profit structure allowed her to go deeper — to build grassroots networks, invest in advocacy, engage counties, and center women with disabilities’ voices in SRH conversations that had long been silenced.