Responding to disability in global health emergencies – by Jackie Leach Scully
An estimated 15% of the world’s population is affected by some form of disability . In principle, disabled people are just as likely as anyone else to be involved in global health emergencies (GHEs), and Article 11 of the 2006 United Nations Convention on the Rights of Persons with Disabilities (CRPD) stipulates that states must take “all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.” 
But over the last 20 years, the humanitarian response community has become aware that in fact disabled people are disproportionately severely affected by GHEs. There are disturbing statistics and individual horrifying stories:
“A quadriplegic woman in New Orleans …kept telling me she had been calling for a ride to the Superdome [after Hurricane Katrina] since Saturday, but despite promises, no one came…I was on the phone with her that afternoon when she told me, with panic in her voice, “the water is rushing in” …We learned five days later that she had been found in her apartment, dead, floating next to her wheelchair.”
National Council on Disability, 2006 
In 2014 the UN Office for Disaster Risk Reduction’s produced a report, Living with Disability and Disasters, that concluded “The key reason why a disproportionate number of disabled persons suffer and die in disasters is because their needs are ignored and neglected by the official planning process in the majority of situations.”  But the story may not be this straightforward.
In the context of GHEs people with disabilities are usually considered as one of several specially ‘vulnerable groups’, alongside groups such as pregnant women, older people, or young children. While it is a positive step to recognise that disabled people may have different requirements from people without disabilities, placing them in such a broad category often shows a lack of awareness of the societal and political factors that contribute to generating vulnerability in the first place.
Potentially most problematic, however, is the fact that prejudices about disabled people’s agency and competence can also result in their exclusion from humanitarian planning, preparation and management.
There are numerous reasons why people with disabilities are at greater risk both of encountering a GHE and of being significantly affected by it. It is easy to assume that the increased vulnerability is entirely to do with the impairment itself. For example, people with mobility impairments may be unable to leave a disaster area or to reach inaccessible shelters or camps. Impaired sight or hearing, or learning disabilities, can make it impossible to access information or warnings. In a GHE, the community or family networks that provide everyday support are likely to be disrupted as people take refuge elsewhere, or are themselves injured or die. When there is major physical disruption (such as in an earthquake or flood) or urgent evacuation, assistive devices or animals may be destroyed or lost with the result that disabled people who function very well in everyday life are suddenly rendered vulnerable.
Some of these vulnerabilities can be removed by implementing relatively simple measures. Disability scholarship has illuminated how complex interactions between a person’s physical or mental impairment and their environment can minimise or exacerbate the experience of disablement. In many recent GHE guidelines this understanding is reflected by an emphasis on improved access to information, transport or shelter, alongside a new emphasis on the huge diversity of impairments and individual needs.
INCLUSION AS EPISTEMIC JUSTICE
But humanitarian response policies are often insensitive to the evidence showing that, for complex and varied reasons, disabled people are much more likely than the general population to experience social disadvantages -such as poverty-, unemployment, or social exclusion, that compound their relative vulnerability to the effects of GHE . So for example, as a result of their economic marginalisation a disabled person may be too poor to own a car, and because of that, have no way of seeking refuge if public transport provision collapses in an emergency.
Allied to this problem is that while humanitarian response policies, such as the Sendai Framework for Disaster Risk Reduction, now routinely target inclusion and accessibility as important principles, there is less evidence that these concepts have been effectively incorporated into practice [5, 6]. On the whole, humanitarian actors are more familiar with medical and charitable models of disability than the social and rights-based model on which the CRPD is based. Medical and charitable models tend to convey implicit beliefs that disability necessarily makes a person more vulnerable, more dependent, less able to exercise full autonomy.
On top of this, persisting cultural prejudices about disability (including those held by humanitarian workers) generate attitudinal barriers that can have very damaging practical consequences. For example, GHEs and other disasters inevitably run into questions about the allocation of limited resources, and humanitarian workers’ underlying beliefs about impairment and disability (whether a learning disabled person is always going to be a burden to their family and community, for instance) can lead to significant differences in distributive outcomes [5, 7, 8].
Potentially most problematic, however, is the fact that prejudices about disabled people’s agency and competence can also result in their exclusion from humanitarian planning, preparation and management. Although people with disabilities are best placed to identify their own needs and solutions, cultural prejudices mean, paradoxically, that they “are more often seen as a problem than a resource” . Failing to take seriously someone’s own knowledge of what their life is like is a form of epistemic injustice commonly encountered by disabled people (see Lisa’s case history). It follows from the wrongful ascription of global epistemic incapacity: where an impairment by itself is taken as rendering a person incapable of having reliable knowledge . Excluding disabled people from the processes of planning and preparation can end in the implementation of measures that are inappropriate and that can, in the worst case, exacerbate their vulnerability in the face of GHEs.
Jackie Leach Scully is Professor of Social Ethics and Bioethics, and Executive Director of the Policy, Ethics and Life Sciences (PEALS) Research Centre, at Newcastle University.
 World Health Organization and World Bank. 2011. World Report on Disability. Geneva: WHO
 Convention on the Rights of Persons with Disabilities. https://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx
 National Council on Disabilities. 2006. The Impact of Hurricanes Katrina and Rita on People with Disabilities: a Look Back and Remaining Challenges. Washington: National Council on Disabilities, p. 8
 United Nations Office for Disaster Risk Reduction. 2014. Living with Disability and Disasters, p. 12 https://www.unisdr.org/2014/iddr/documents/2013DisabilitySurveryReport_030714.pdf
 Women’s Refugee Commission. 2014. Disability Inclusion: Translating Policy into Practice in Humanitarian Action. New York: Women’s Refugee Commission. https://www.womensrefugeecommission.org/populations/disabilities/research-and-resources/984-disability-inclusion-translating-policy-into-practice-in-humanitarian-action
 Hanschke, K., Wolf, L.E. and Hensel, W.F. 2015. The Impact of Disability: A Comparative Approach to Medical Resource Allocation in Public Health Emergencies. St. Louis U. J. Health Law & Policy 8: 259-300
 Hensel, W.F. and Wolf, L.E. 2011. Playing God: The Legality of Plans Denying Scarce Resources to People with Disabilities in Public Health Emergencies. Florida Law Review 63: 719-770
 Weibgen, A. 2015. The Right to be Rescued: Disability Justice in an Age of Disaster. Yale Law Journal 124, No. 7. Available at SSRN: https://ssrn.com/abstract=2529493
 Women’s Commission for Refugee Women and Children (now Women’s Refugee Commission). 2008. Disabilities among Refugees and Conflict-Affected Populations. New York: Women’s Commission for Refugee Women and Children and United Nations High Commissioner for Refugees
 Scully, Jackie Leach. 2018. From ‘‘She Would Say That, Wouldn’t She?’’ to ‘‘Does She Take Sugar?’’: Epistemic Injustice and Disability. International Journal of Feminist Approaches to Bioethics 11: 106-124