‘Leave no one behind’? The exclusion of persons with disabilities by development NGOs

Abstract

Persons with disabilities have a right to be included in international development, yet persons with disabilities in the Global South are overwhelmingly excluded from development-related activities. While many states have developed disability inclusive policies for official foreign aid, many private international non-governmental organizations (NGOs) have failed to do so. In response to this gap, the Disability Inclusive Development Initiative at the University of Washington began an ongoing research study of small and medium-sized international NGOs. Thus far, surveys collected and depth interviews have revealed four major barriers to inclusion on the part of mainstream development NGOs: 1.) lack of awareness, 2.) belief that persons with disabilities constitute a separate focus area, 3.) assumption that the costs of inclusion are too high, and 4.) believing that others, such as governments or families, are responsible for ensuring access and accommodations, rather than the NGO itself.

Keywords:

• International development
• human rights
• non-governmental organizations
• disability inclusion

Introduction

On December 3, 2018, the United Nations published its inaugural disability and international development report. The conclusion of the Realization of the Sustainable Development Goals by, for and with Persons with Disabilities was devastating. Persons with disabilities are twice as likely to live under the poverty line, one-third more likely to be illiterate, and almost seven times more likely to experience unmet basic health needs than their peers without disabilities. While the international community has made significant progress in alleviating poverty, raising education levels, increasing life expectancies, and achieving other development objectives, persons with disabilities are rarely beneficiaries of such progress. The increasing gap between persons with disabilities and their nondisabled peers highlights the failure of the development community to live up to their current mantra of ‘Leave no one behind’.

The systematic exclusion of persons with disabilities, 80% of whom live in the Global South, is all the more devastating given that the text of the United Nations 2030 Agenda for Sustainable Development specifically references the need to include persons with disabilities eleven times. Furthermore, the now decade-old 2006 UN Convention on the Rights of Persons with Disabilities (CRPD), which has been ratified by 177 States Parties, includes Article 32 on International Cooperation, which requires ‘international cooperation, including international development programmes, is inclusive of and accessible to persons with disabilities’. Whereas both grassroots Disabled Persons Organizations (DPOs), global DPO networks, and international disability nongovernmental organizations (NGOs) have sought to promote the development of their members, they cannot accomplish this task alone. Mainstream development actors, from states to grassroots NGOs, however, largely have not done their share. For this global mandate to succeed, both DPOs and NGOs must promote the development of persons with disabilities in their programs.

To be sure, many official foreign aid agencies have developed policies to promote disability inclusive development, but there is little evidence to show if these policies are making a difference in the lives of persons with disabilities throughout the Global South. The UK Department for International Development (DFID), for example, has its new Strategy for Inclusive Development 2018–23, which promotes four pillars of action (inclusive education, social protection, economic empowerment, and humanitarian action) and three strategies (stigma and discrimination, empowering women and girls with disabilities, and creating access to assistive technologies) that are meant to redress the participation barriers persons with disabilities encounter in development. But our preliminary data has shown that these policy commitments and similar ones made by the US Agency for International Development, Japan International Cooperation Agency, German Agency for International Cooperation, and others will not succeed if they do not change the practices of NGOs on the ground.

Researching the frontline of development

Big, medium, and small international NGOs are the frontline of development in many of the world’s communities. They are the in-country service deliverers that official foreign aid agencies often use to reach the communities they want to serve. In many places around the world, it is NGOs that provide micro-finance and vocational training, build schools and deliver books, vaccinate children and provide food aid to pregnant mothers—not local governments. Therefore, NGOs represent a significant audience that the CRPD, the Sustainable Development Goals, and other disability inclusive development norms need to reach. But have NGOs gotten the message? And, if so, how fluent are they in disability inclusive development?

Questions such as these are what motivated a small group of faculty and students at the University of Washington in Seattle to launch the Disability Inclusive Development Initiative (DIDI) shortly after the release of the UN’s disability and international development report. One task of DIDI has been to begin surveying and interviewing a diverse set of small, medium-sized, and large international NGOs. This ongoing research project seeks to assess NGOs’ knowledge and implementation of disability inclusive development policies and practices. The preliminary data used in this article, was collected through an online survey distributed to a network of international development NGOs and semi-directed interviews with a select number of NGO leaders and program personnel. While still in its initial stages, DIDI’s research has unveiled significant barriers that persons with disabilities face in accessing the development programs implemented by NGOs.

NGOs as barriers to inclusive development

The survey and interviews, thus far, have revealed four types of barriers that cluster around major themes—lack of awareness, beliefs that persons with disabilities constitute a separate focus area, assumption that the costs of inclusion are too high, and responsibility shifting onto others:

1. Lack of awareness

The majority of NGOs exhibited total ignorance regarding all aspects of disability inclusive development. The most egregious was their denial that persons with disabilities existed in the places where they worked. One program administrator for an international education NGO working in a small country in East Africa explained that:

There honestly isn’t a huge population. I mean, [country] is really small. So, in terms of different disabilities, it’s not a huge population. I know that there is one school in particular in [country’s largest city] that is for the blind, and, in all honesty, that can probably house all the people [that are blind] in the country. There’s just not a ton.

Of course, the administrator’s claims are erroneous. Census data for this country estimates that the population includes hundreds of thousands of persons with disabilities, of which tens of thousands are blind– a number which obviously could not be accommodated by a single school. Official census data, including the data for this country, are likely underestimations, as persons with disabilities are not always reached in various data-gathering endeavors, and others are discouraged from self-reporting disability in fear of stigma or discrimination.

Another persistent lack of awareness regards what accessibility entails and the existence of international norms. For example, one organization providing maternal healthcare in a country in southeast Asia initially argued that their services were physically accessible. The executive director of the NGO explained: ‘We have recently moved to a ground-level facility … and it has become more accessible’. After some prompting about whether the entrance to the new facility still required navigating stairs, the director conceded ‘No, it still is not like a wheelchair could come straight in’. Among organizations interviewed, there was even less understanding of access to information and communication (i.e. multiple formats or sign language interpretation). Part of this may be due to NGOs ignorance regarding the disability-relevance of the SDGs, the development aspect of the CRPD, or inclusive development as a whole. When asked about the CRPD, a program coordinator of a malaria prevention organization answered ‘I did a quick Google on it [the CRPD]. We have zero understanding. It has not come up’.

2. Disability as a focus area rather than a cross-cutting issue

The second major barrier that persons with disabilities face in participating in the programs and services implemented by international NGOs is that they are viewed as a focus area completely separate from the population that the NGO serves. One mainstream NGO, when invited for an interview, simply declined by stating ‘[Disability] is not particularly our focus’. For others, their answer was more nuanced, but amounted to much the same: they did not see persons with disabilities as stakeholders in their programs. One, for example, explained ‘Our work is… we are working so much with poverty that there are so many other… [laughs] I mean, everything is important, but there are so many issues that we are dealing with’. Another similarly explained ‘Honestly, because that [including persons with disabilities] is not really our area of expertise and wheelhouse [area of interest and experience], that’s not something I’ve spent a lot of time researching’. The implication of this belief is that persons with disabilities are not included among people who need income and employment opportunities, better education, or quality healthcare. This showcases why organizations have little motivation to ensure that their programs are accessible. Many NGOs, however, did proffer that their projects were gender inclusive but failed to acknowledge that many women and girls with disabilities were unable to equally participate in their programs.

3. Assumption cost is too high

Despite having made minimal or even no efforts to be inclusive, many NGOs assumed that the cost of inclusion would be too great to justify. During interviews, some interviewees were willing to concede the fact that persons with disabilities were an important population to include, but would then seek to elicit sympathy from the research team by explaining ‘Without funding, it is not going to be possible for us to add [accessibility]. I hope you understand the financial constraints we operate under’. Of course, as the International Labour Organization (Buckup 2009) and, more recently, CBM International (Banks and Polack 2014) have found, the cost of exclusion is much higher. Excluding persons with disabilities means that every development actor will fail to reach their development goals of reducing poverty among the most marginalized, raising global literacy, or promoting better health.

4. Expectation is the country must lead, not the NGO

Finally, whereas many organizations were happy to tout themselves as changemakers in the communities where they worked, almost all, in terms of disability inclusion, were willing to wait for someone else to lead. Many expressed that the country where they worked was doing little, therefore they could do nothing as well. For example, one NGO explained the African country where they worked ‘is definitely, as a whole, behind on a lot of accessibility’ and thus felt her organization was off the hook for ensuring that their facilities were accessible. Another organization, similar to the comments meant to elicit sympathy regarding the costs of accessibility, explained to the research team that ‘Our work has been under the challenge of their society, that has been reflected in this […] Like I said, it is hard to find a building that has disability access’. Again, while many organizations explicitly sought to change norms regarding gender, children’s right to go to school, or traditional health practices, when it came to ableism, they justified themselves by shifting responsibility to change onto others.

Conclusion: inclusion cannot be an exception

Within our data pool, there was a lone exception. One organization, which supported schools in Western Africa, demonstrated a commitment to disability inclusive development. This commitment, however, was not due to outreach from external organizations, such as DFID, nor of deep knowledge of the CRPD or the disability-relevance of the SDGs, but the organization’s specific history and the independent knowledge of employees. The founder, a physical therapist, had spent part of her youth volunteering in Western Africa through the Peace Corps. Through her field placement in a leprosy hospital, she worked with many persons with disabilities and obviously become familiar with both their lived experiences, but also the local resources available to promote their inclusion. Thus, her personal knowledge, when coupled with a program director who had learned about disability in college, resulted in a human rights-based approach to development that included children with disabilities. Therefore, it was no surprise when she answered during an interview that:

When we encounter kids, who are clearly facing some sort of barrier to education in terms of ability, we are very intentional on trying to address that. Whether it’s providing crutches for kids who can’t walk so they can go to school… [or] build[ing] special desks for kids who have a hard time sitting in the normal desks. Then there are kids who have some mental ‘disabilities’ and they are right in there with the classroom…

While such exceptions are promising, ensuring that persons with disabilities equally participate in development is not something that can be addressed by relying on lone, enlightened exceptions. Instead, UN organizations, official foreign aid agencies, and, importantly, disability rights advocates and disability studies scholars, have a duty to reach out to the international development community, especially NGOs, to raise their awareness. It is imperative that disability is understood as a cross-cutting issue that must inform the way in which individual NGOs and the larger development community achieve their goals. While our data is still preliminary, the time for turning that research into action is now.

Disclosure statement

No potential conflict of interest was reported by the authors.