He sleeps like a goat on the floor because she cannot afford for him to soil yet another mattress, she tells me. He is excluded from a nutrition programme, despite being malnourished, told by officials that this is part of his disability. She cannot leave him alone, and so she herself is prevented from working or accessing the government’s public works programme. She is unaware of a national disability categorisation exercise that took place in her community: she doesn’t feel she or her son would be welcome at meetings where information is shared.
In short, she perceives that her son’s life is not valued by others while she herself experiences ‘disability by proxy’ — excluded because of her status as the mother of a child who experiences disability, the bearer of shame.
Fear of difference
The issues that this family faces are not exceptional. Families in several sub-Saharan African countries have recounted to me similar stories of exclusion, stigma, discrimination and dehumanisation. Far from enjoying the dignified life promised to them in national government legislation and global conventions, persons who experience disabilities often find themselves unable to access the social protection to which they are entitled. The main reasons for their exclusion are:
- Widespread misunderstanding of the causes and nature of disability following generations of negative narratives associated with beliefs that disability is a punishment or curse or that it is contagious;
- Fear of what is not understood leading to the exclusion and isolation of those who experience disabilities. This fuels the notion that persons with disabilities are different and leads to a lack of interaction between those with and without disabilities in communities; and,
- ‘Othering’ leading to the devaluation and dehumanisation of persons who experience disability
These are not small issues; they are not something that a well-crafted policy or time-limited donor-funded programme can change overnight but something requiring widespread change in understanding and social behaviour. Nonetheless, social protection has the potential to transform the lives of families experiencing disability when coupled with concerted efforts to educate, dispel myths and adopt a biopsychosocial approach to disability mainstreaming at the core of inclusive policy and practice across sectors. In this way it can contribute to the creation and/or maintenance of dignity in a person or family’s life.
Who needs support?
Evidence in the recently published Leaving No-one Behind report tells us that we are far from this transformation for persons who experience disability. For a start, we don’t know who needs assistance or what assistance they need, since disaggregated data on disability are often scarce and/or of low quality in low- and middle-income (LAMI) countries. Data collection is frequently hampered by the three points above, exacerbated by limited resources and political will. Even in countries where disability-relevant or disability-specific social protection programmes exist, eligibility criteria are often based on crude and/or rapid medical assessment (i.e. focused on status, not needs).
Disability is used as an ‘umbrella term’ that refers to the interaction between a person’s body, mind and social and physical environment. The term covers the health condition(s), impairment(s), activity limitation(s), and participation restriction(s) that a person may experience. However, this remains poorly understood and the term ‘disability’ is frequently used to refer solely to health conditions or impairments, in the absence of a consideration of how these impact upon a person’s life. When working to improve systems for the identification and registration of refugees with disabilities, I have encountered registration questionnaires that confuse medical and disability issues, so that the resulting data are unclear. People who experience non-visible disabilities, such as communication disabilities, fail to have their challenges adequately recognised. People who experience multiple disabilities frequently struggle to have their unique combination of difficulties accounted for, with often the most visible impairment being recorded to the exclusion of their additional, and potentially significant, challenges and associated support needs. This affects the accuracy of data and thus, in turn, policy design and allocated resources, ultimately impacting upon the individual’s access to appropriate support.
In a bid to improve the availability of national and globally comparable disability data, at the Global Disability Summit (GDS) in London in 2018 ten national governments committed to using the Washington Group questions during their next census. Although not detailed enough to assess individual needs (this would require a specialised and more in-depth survey), these questions document any activity limitations a person may experience, rather than their health condition or impairment. Their use will enable the documentation of a person’s multiple abilities and challenges, rather than their medical status.
However, in the case of children, those under five years of age are rarely included in identification and registration exercises. The additional adoption of the innovative Washington Group/UNICEF module on child functioning would also allow the identification of disability from age two, expanding the scope for disability-specific entitlements for young children. The Government of Rwanda is considering using this module with young children and has taken this a step further, having recently validated an early childhood development risk screen for children from birth to two years and eleven months old. This may help to identify factors that could negatively affect development, potentially resulting in developmental delay or disability. The screen is linked to a cross-sectoral referral system, including social care services incorporating social protection programmes. It is true that the service structures and professional capacity may not yet be available to respond to an increase in demand, but the generation of data to determine need is a crucial first step to take.
It’s not (just) about the money
To enable disability-inclusive policy and programmes to be implemented effectively, people, from policy-makers to communities, need to understand the true causes and nature of disability. They need to know that disability does not affect only a small number of people, but that they too are likely to be affected by disability somehow (themselves or someone they know) at some point in their lives, and, most importantly, that people who experience disability are people — with capabilities and the right to participate in society and to live with dignity.
You’ll hear ad infinitum that ‘disability is a cross-cutting issue’. This is, of course, true and it is critical that disability-inclusive policy is incorporated across all sectors. Unfortunately, however, it is more often a convenient excuse for no particular institution to take responsibility for ensuring high-quality, inclusive policy or programming. This results in disability being an afterthought in service and programme design, frequently ‘shoehorned’ in, with little or no dedicated funding to implement inclusive strategies effectively. Six commitments were made at the GDS 2018 by a number of LAMI countries around ensuring dignity and respect for all. However, little will change unless disability is recognised as an issue affecting the realisation of human rights and the responsibility for change is elevated to high-level, high-capacity and respected institutions.
Of course, access to social protection is only one part of the puzzle of improving the dignity and participation of people who experience disabilities. It is also important, for example, that the supply of specialist goods and services, such as assistive devices and rehabilitation, is strengthened alongside improving access to mainstream services. However, as Leaving No-one Behind highlights, this can bring additional costs for persons needing such support. Social protection has the potential to mitigate some of the costs associated with meeting individual needs and promoting dignity and independence. In this regard, it may be only one piece, but it is an important piece, of the puzzle—one upon which can be found the face of more than one billion people.
 Barrett, H., Marshall, J., and Goldbart, G. (2019). Refugee children with communication disability in Rwanda: Providing the educational services they need. Forced Migration Review. March edition. 36-38. https://www.fmreview.org/education-displacement/barrett-marshall-goldbart
 See https://www.gov.uk/government/collections/global-disability-summit-commitments.
 See discussion on additional costs of living with disability in https://www.developmentpathways.co.uk/publications/child-disability-benefits-an-investment-worth-making/
 Barrett, H (2019). Developmental Risk Screen for Children Birth to 2 years 11 months. For Rwanda National ECD Programme, UNICEF and Chance for Childhood. Pending official release.
 An estimated 1 billion people globally (WHO and World Bank (2011). World Report on Disability https://www.who.int/disabilities/world_report/2011/en/ )
 See Development Pathways (2019) ‘Leaving no-one behind’ report https://www.developmentpathways.co.uk/publications/leaving-no-one-behind-building-inclusive-social-protection-systems-for-persons-with-disabilities/
 WHO and World Bank (2011). World Report on Disability https://www.who.int/disabilities/world_report/2011/en/