By LNOB Coalition Kenya

Akina Odhiambo, a 14-year-old girl with albinism, lives in the county of Embu, in Kenya. She dropped out of school in the first grade due to visual disability resulting from her albinism. She could not get spectacles to correct her blurred vision.

Akina was orphaned at age 8. Her caregiver, a maternal aunt, died last year due to COVID-19 complications. Akina has been promised food and cash aid by the district welfare officer, Adamu. Food parcels are distributed by the district office, but Adamu takes the food first to his relatives and friends, and often demands a bribe from the needy.

Corruption is high in Kenya and often diverts social protection assistance meant to reach the most vulnerable people. The pandemic has worsened this situation, with officials like Adamu demanding kitu kidogo (the Swahili term for “a little something”) before assisting vulnerable people. As a result, people like Akina seldom get a decent meal on any given day.

Albinism is a profoundly misunderstood condition, socially and medically. In Akina’s community, albinism (and disability in general) is associated with superstitions – it is seen as a curse. Biases and stereotypes further threaten the security and dignity of people with disabilities. Throughout Africa, people with albinism suffer alienation and even physical abuse. They are dehumanized, their bodies mutilated or killed for witchcraft rituals. 

Akina is a fictitious character, but her story is shared by many young girls with albinism. It is a story of extreme discrimination, hunger, and poverty.   

The ongoing project of the Kenya’s Leave No One Behind (LNOB) Coalition has revealed a data gap that prevents better targeting of public services for people with disabilities. The LNOB Coalition report, titled ‘Disability inclusion research on determining the drivers and level of marginalisation among persons with disabilities in four counties of Kenya (Embu, Taita Taveta, Siaya and Makueni),’ documents that poor targeting and lack of county-level policy implementation has resulted in tales of dehumanization like in the story of Akina.

Unmet Promises of Human Rights and Social Protection

Akina’s experiences are the result of unmet social protection promises, in spite of constitutional guarantees that oblige the Government of Kenya to uphold, protect, and promote the rights of people with disabilities. The right to life, liberty, and security of person – that no one shall be subjected to torture or to cruel, inhuman, or degrading treatment or punishment – is a cornerstone of the Universal Declaration of Human Rights, among other instruments which Kenya has ratified.

In Siaya County, according to the report, a disabled man spent a whole day at a hospital without being attended to. At about 6 pm, he was asked to leave and come back the following day. Being visually impaired, he had spent the entire day seated on the same chair without knowing that the queue had been moving.

In Embu, a woman abandoned her severely disabled daughter after she had her uterus removed for fear that she would be impregnated. The girl, who suffers from cerebral palsy, was taken into the care of another woman who had her own autistic child.

These real-life stories are not reflected in Kenya’s official statistics. George Awalla, Co-Convenor of the LNOB Coalition in Kenya, says “Better ways to identify and support vulnerable people with disabilities are needed. Official statistics miss the real issues. Citizen-generated data can tell their stories.” Data from non-official sources are worthy of recognition, and would enable better targeting in resource allocation.

Data Inclusion: Fighting Invisibility

The benefits of inclusive data are indisputable. In the implementation of the Sustainable Development Goals (SDGs), better data hold the key to a more meaningful identification of the people deemed furthest behind, and the structural drivers of inequality.

Of concern, as Akina’s story illustrates, is the invisibility of people with disabilities. In reference to Kenya’s National Bureau of Statistics (KNBS) census of 2019, an estimated 9,729 people in Kenya have albinism. “This is the first census in which persons with albinism and intersex were counted in the country,” as the LNOB Coalition reported.

Using focus group discussions, household surveys, and key informant interviews, a better appreciation of the circumstances of people with disabilities (including the plight of their caregivers) is emerging. Without improved and more accurate data on the situation faced by people with disabilities, it is difficult to achieve the SDGs, and even harder to monitor and review progress. “For Kenya to meet its ‘leave no one behind’ pledge, the Coalition recommends that data must highlight inequality, the nature and extent of disability, and the intersectional disadvantages,” says Charles Nyukuri, Co-Convenor of the LNOB Coalition in Kenya.

It is too early to tell whether policy change will result from this work any time soon, but there are reasons to be hopeful.

The KNBS, with support from the Global Partnership for Sustainable Development Data (GPSDD), has developed simplified guidelines for citizen-generated data. This is in line with the Government of Kenya’s National Quality Assurance Framework. The Coalition seeks to use this opportunity to lobby, monitor and advocate for a more robust use of community-driven data to end poverty, inequality and marginalisation. 

The author of this guest article, the LNOB Coalition, is a member of the global LNOB Partnership of international and country-based civil society organisations. The International Civil Society Centre (ICSC) acts as its global secretariat.

In Kenya, membership involves more than 40 domestic and international organisations, including Voluntary Service Overseas (VSO) Kenya, SDGs Kenya Forum, Action Aid, Plan International, Islamic Relief, Humanity & Inclusion, Development Initiatives, United Disabled Persons of Kenya, Christian Blind Mission (CBM) Kenya, Caritas Kenya, Polycom Development, Rural Citizen Network for Development, and the Association of Kenya Elders.

This article is part of a series from the LNOB Partnership that aims to tell the stories of the people behind the data on leaving no one behind. It is also published on the website of the LNOB Partnership.