Disability Rights Fund

Diana Samarasan is Founding Executive Director of the Disability Rights Fund and the Disability Rights Advocacy Fund – global participatory grantmakers which resource people with disabilities in the Global South to advocate for equal rights and opportunities. Diana’s work is helping to #ShiftThePower in philanthropy, turning the "charity" model on its head by involving beneficiary communities in decision-making about where money goes. She is a founding member of the Participatory Grantmaking Collective. Prior to DRF, Diana directed the Mental Disability Advocacy Center in Budapest, which takes cases to court against governments for abuse of the rights of people with disabilities in institutions. She also headed the Russian and Eastern European programs of Doctors of the World, and worked during the Kosovo Crisis with the American Refugee Committee. Diana was a public service fellow in the 2004 Mid-Career program at Harvard Kennedy School.

Persons with disabilities are 1 in every 7 people globally (and 1 in every 5 women). Despite this, activists with disabilities receive less than 3% of all human rights dollars (and only 1% of funding for gender equality). This is largely because persons with disabilities are seen as objects for charity and not as active, empowered citizens able to advocate for rights. The adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD) in 2006 - now ratified by nearly all UN member states - changed this by providing an opportunity for organizations of persons with disabilities (DPOs) to advocate for rights at country levels. But the resources were missing. The Disability Rights Fund, launched in 2008 as a pooled fund and participatory grantmaker, is the largest funder of DPOs in the Global South, and a model of how activists with disabilities can change the world.

Persons with disabilities are 1 in every 7 people globally (and 1 in every 5 women). 80% of persons with disabilities live in the developing world and are disproportionately poor. Only 10% of all children with disabilities access school; the global literacy rate among persons with disabilities is 3%. Women with disabilities are 2-3 times more likely to be victims of violence than other women. Despite this, activists with disabilities receive less than 3% of all human rights dollars (and only 1% of funding for gender equality). As noted above, the CRPD - and the Sustainable Development Goals - provide an opportunity for organizations of persons with disabilities (DPOs) to challenge rights gaps at country level. The Disability Rights Fund - which has activists with disabilities at governance, grantmaking, and staffing levels - resources DPOs across 22 countries in Africa, Asia, the Pacific and the Caribbean. Since 2008, DRF has made more than $35million in grants to DPOs around the world, including to address COVID-19 response and recovery. A unique grantmaker, DRF illustrates the urgency for philanthropy to #ShiftThePower and include more people with lived experience in decision-making about where money goes.

The Disability Rights Fund pools funding from a diversity of donors (governments, foundations and individuals) and works with activists with disabilities to provide technical and financial resources to organizations of persons with disabilities so that they can lead advocacy for rights at national and grassroots levels in 22 countries around the world. DRF is a grantmaker that is turning the 'charity' model on its head by challenging the predominant paradigm that sees people with disabilities as objects for support. By including activists with disabilities at governance, grantmaking, and staffing levels, DRF shows that people with a diversity of disabilities have lived experience that is critical for effective and strategic support of rights achievement that leaves no one behind. Annually, DRF makes 100-125 grants, each ranging from $5000 - $50,000, to organizations of persons with disabilities in Africa, Asia, Pacific and Caribbean. More than fifty percent of these grants go to groups of persons with disabilities marginalized even within the disability movement, including women & girls, youth, Indigenous, and impairment groups such as persons with albinism, dwarfism and psychosocial disabilities.  Grants are accompanied by technical assistance in movement building and rights advocacy to best support activist-led change on the ground. 

DRF funds organizations and groups of persons with disabilities (DPOs) at national and local levels in 22 countries in Africa, Asia, Pacific and Caribbean. Grantees range from more well-established national cross-disability organizations to grassroots and emergent organizations of very marginalized groups of persons with disabilities, such as persons with psychosocial disabilities, little people, and women with disabilities. The majority of DRF grantees have never received a grant from any funder before, and for those who have received funding, it has usually only been for service provision, not rights advocacy. DRF resources provide the means for DPOs to raise issues with local and national governments and to monitor and report on rights abuses, including in Geneva before the UN treaty bodies, and in New York at the High Level Political Forum on the SDGs. Because DRF is a participatory grantmaker, with persons with disabilities at all levels of the Fund (governance, grantmaking, staff), DRF is informed by global activists with disabilities. The majority of DRF staff working at country level are from that country's disability movement. In other words, people with disabilities inform and make decisions about DRF strategy, grants, and assistance to grantees. 

As a participatory grantmaker that has become one of the largest human rights funders of organizations of persons with disabilities globally, DRF aligns extremely well with 'elevating opportunities for all people, especially those who are traditionally left behind.' DRF also aligns with the other two dimensions of The Elevate Prize by supporting people with disabilities to lead (and participate in funding) rights campaigns that are changing how people with disabilities are seen in countries across the world, and in doing so, challenging people's attitudes, beliefs and behavior towards disability. 

When the process began that led to the 2006 adoption of the UN Convention on Rights of Persons with Disabilities (CRPD), I was heading a Hungarian organization that took cases to court against governments in the former Soviet Union for abuse against persons with psychosocial and intellectual disabilities in institutions. I had made many visits to these institutions and was shocked not only by the detention, horrible conditions and abuses but also by the attitudes of staff who mainly dismissed the people living there as "not having the same feelings we do." This dehumanization is a common experience for persons with disabilities around the globe and is one of the driving forces for the CRPD, to underline that persons with disabilities are human rights holders like anyone else. The CRPD was a giant step forward, mandating the involvement of representative organizations of persons with disabilities in rights achievement. But, there was no money for activists with disabilities to use the CRPD at country levels. The Disability Rights Fund - launched in 2008 - was conceived over a year of conversation with disability activists and donors as a way to address the opportunity of the CRPD and this gap in funding.

I am passionate about DRF for a wide range of reasons. Disability is something that is a common experience, and part of the diversity of humanity, yet so few people recognize its commonality or the humanity of people with disabilities. Like many people, I have had disability in my family, and I have experienced disability myself. While I am not a person with disability, I know that if I live long enough, I am likely to be one. Despite the large population of persons with disabilities in the world (1 billion), disability is often an after-thought, if considered at all. This is true within human rights philanthropy and development funding. It is even true in diversity, equity and inclusion programs. Even Darren Walker at Ford Foundation had to issue a mea culpa about leaving disability completely out of Ford's strategy on inequality a few years back (he has worked diligently to start to address this now). DRF is a way for me to redress this absence in human rights and social justice circles, in philanthropy, and in development settings and funding. It is a way to remake decision-making tables in these spaces so that they are more inclusive and just. 

While I have degrees and career experience that others point to as evidence that I am well-positioned, what truly positioned me as the Founding ED of DRF and its ongoing director is my passion for justice and my refusal to hear 'no.' Ever since I was a child - the daughter of - on the one hand, a family of Jews with roots in Lithuania, and on the other hand, descendants of white settlers who had married Native Americans - I have held onto hope for change. Rebecca Solnit's book, "Hope in the Dark" explains this kind of hope as "...a gift you don’t have to surrender, a power you don’t have to throw away. And though hope can be an act of defiance, defiance isn’t enough reason to hope. But there are good reasons." I have always held onto hope, and hope has made me act, and I have been bold in my action. My degrees and career experience - and race - gave me the privilege to be able to think I could succeed and much of the education and tools with which to do it. My anger at injustice against persons with disabilities, and my connections with activists with disabilities and with human rights donors willing to take a chance, have provided seeds and means. While DRF has grown enormously, there is much to do. Our world, affected by COVID and awakening to racial injustice, is only beginning to see the need to #ShiftThePower, including in philanthropy. 

There have been and are many adversities for persons with disabilities, especially - but not only - in the developing world. A huge issue is government and public ignorance and lack of data about persons with disabilities. In many countries, data is simply not collected or it is poorly collected. At the outset of the Disability Rights Fund, this lack of information and knowledge about persons with disabilities and their representative organizations (DPOs) was a stumbling block among potential donors. Donors did not know whether sufficient DPOs existed in developing countries; they did not know whether these organizations were interested in rights advocacy; they did not know what the rights priority issues of persons with disabilities were; they did not know whether these organizations could absorb funding or run projects; and they also did not know how to make grantmaking accessible to a variety of persons with different disabilities. Through a participatory grantmaking structure which included activists with disabilities from the Global South in Fund governance and grants strategy and decision-making, together with donors, these obstacles were overcome. The Fund is a learning mechanism - for donors to learn about disability movements, and for activists to learn about donors. 

DRF has been spoken about as one of the first global participatory grantmakers, and one that is uniquely disability-inclusive and accessible. Other participatory grantmakers, addressing other marginalized groups such as young feminists (FRIDA Young Feminist Fund), LGBTQI persons (UHAI - EASHRI), and sex workers (Red Umbrella Fund), have come to DRF and me specifically for advice and mentorship as they built their own structures and funding. A broad array of donors, including the EU-UN Spotlight Initiative addressing violence against women and girls and the Global Resilience Fund for young women and girls (a collective response to COVID-19), have come for advice about how to include persons with disabilities in their work. Together with other participatory grantmakers and with the US Foundation Center - now Candid's - Grantcraft, the 2018 guide, "Deciding Together, Shifting Power and Resources through Participatory Grantmaking," was developed, with an introduction focused on me and DRF. More recently, I helped to start the Participatory Grantmaking Collective, an informal group of practitioners who work together and within their organizations to promote equitable decision-making in philanthropy. DRF was built on the disability community slogan, "nothing about us without us." This disruption in who is in power is critically needed.