The Role of NGOs in Disability Policy Implementation: Releasing the Hamster from the Wheel

by Erica Edwards

Importance of NGOS and Non-Profits to Disability Policy Enforcement

NGOs (non-governmental organizations) and non-profit organizations play a critical role in the lives of people with disabilities. In The Marketing of Rebellion: Insurgents, Media and International Activism, author Clifford Bob (2005) agrees with his statement “NGOs can mobilize resources for beleaguered movements, and pressure repressive governments” (p.4). We have seen consistent examples of the power wielded by NGOs to effect policy change in the U.S., as NGOs and non-profit organizations operated by people with disabilities forced implementation of the Rehabilitation Act of 1973 and also passed and enforced the Americans with Disabilities Act… both were civil rights laws geared towards people with disabilities. These successful examples of advocacy by NGOs are common to other countries as well. So, the need for these advocacy-led movements continues in the face of many signatory countries’ unenforced mandates of the UN Convention on the Rights of People with Disabilities.

Threats to NGOs and Non-Profits

But, these advocacy NGOs/non-profits are transforming as economic interests worldwide gain a stronghold over other causes and concerns. Bob warns that as international causes compete for NGO support and funding, that problems often result when NGOs take over causes: “NGOs at their root are organizations – with all of the anxieties about maintenance, survival, and growth that beset every organization” (p. 14). Because NGOs that serve people with disabilities are also organizations, their goals can at times run counter to what is best for individuals with disabilities:

  • Increasingly, NGOs/non-profits led by and for people with disabilities worldwide have accepted government contracts, in the absence of government’s interest in doing so. With more resources dedicated to government service provision and meeting the funder’s contract goals among stretched staff and budgets, advocacy has become a superfluous role instead of a necessary one;
  • Many of these NGOs/non-profits have become paternalistic. Instead of people with disabilities deciding what’s best for themselves and their own communities, the funder or NGO determines the program and service goals, which again… often excludes advocacy; and
  • Advocacy requires mobilization of and collaboration between NGOs/non-profits, which threatens many in an environment of scarce resources — for other organizations are seen as competition for funding. Consequently, there is no incentive to mobilize.

The vision for many NGOs/non-profits, therefore (albeit unintentionally), has shifted from advancing society as a whole to advancing the organization and its own staff/clients. Thus, the behavior of some NGOs can actually fragment or dilute the disability movement and weaken the position of citizens with disabilities they are striving to advance. (For more information, see UNESCO report.)

A Central American NGO as a Hamster in the Wheel

I saw examples of this on my visit to a Central American country in the summer of 2010. I was there to examine the country’s disability laws and government structure, and to evaluate the effectiveness of these policies. What I recognized on this visit was the critical role that NGOs played in delivering government services. Approximately fifty NGOs had sprung up to address the needs of people with disabilities that government was unable and/or unwilling to meet. This country faced what seemed to be insurmountable odds in providing for its citizens. Endemic corruption was woven throughout its government, over half of its children under the age of 5 were malnourished, and over half of its families were in extreme poverty. Further, disability rights that were legitimated by the Constitution and other laws had not been funded. As a result, they had not enforced. Therefore, barriers saturated this society, in spite of laws that were passed to eradicate them. Steps led into every building with no ramps available. There were few affordable wheelchairs and assistive devices available. There was no accessible transportation and access to an equal education for children with disabilities was sorely lacking. People with disabilities were unemployed and had to either beg in the streets or depend on their families, who themselves were struggling to survive. In this context, the goal for those that lived here and had disabilities was simply about survival. Thus, although NGOs there dedicated to other causes led successful advocacy efforts to improve conditions for other disempowered groups, NGOs dedicated to those with disability assisted in providing direct services, but did nothing with advocacy. As a result, disability rights laws for the past 15 years had not been codified or funded in this country, in spite of the large number of NGOs involved.

The country I visited continued to ignore its laws and policies with no political fallout as NGOs continued to serve as stopgaps for government without advocating for change. Over time, the goals of these NGOs may increasingly be difficult to meet, as deplorable treatment of citizens with disabilities by its government continues to grow in the face of NGO neglect of advocacy work. As a result, NGOs become relegated to the proverbial hamster in the wheel…running constantly, spending large amounts of resources, but advancing its people nowhere. And without involving people with disabilities in political advocacy, the hamster will continue to run until he dies from exhaustion.


NGOs and non-profits in this Central American country and others deliver valuable services, and they should be applauded for what they do. At the same time, they should not forget the big picture of societal inclusion. This cannot be obtained strictly through service provision. NGOs led by people with disabilities can turn this tide of exclusion and unfunded mandates by ensuring that advocacy remains central to their missions. By doing this, they can help build a movement and spread the message that disability rights is a substantive issue affecting core democratic principles that countries are to uphold. They can also put pressure on governments to turn written laws, like the UNCRPD, to implemented and enforced ones.  In the case of this Central American country, quality of life for people with disabilities may then be able to advance beyond simple survival to full societal inclusion and participation.

About Erica Edwards

Erica Edwards has cerebral palsy and 15 years of experience in disability working as: licensed counselor, policy analyst, educator, researcher, writer, and Executive Director. Her research dedicated to disability policy, inclusion and government administration has been published and presented at national/international conferences. She is currently obtaining her PhD in Public Administration.

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