Susan Sygall

Susan Sygall, who became a wheelchair rider at the age of 18, is reimagining the meaning of full citizenship for people with disabilities in the context of international development.

Over the last thirty years, Susan has transformed the field of international exchange and international development to ensure the full participation of people with disabilities as leaders of change. She knew that people with disabilities around the world needed to unite, move away from siloes (i.e. blind, deaf, physical), and form a cross-disability movement. Susan also realized few people with disabilities were being included in international development programs. In addition, she was dismayed to see that, although women and girls with disabilities are among the most vulnerable, very little was being done to target their needs and unlock their leadership potential.

In 1981 Susan resolved to tackle each of these issues and transform disability inclusion within international development. She strived to change the perspectives and practices of development organizations from a medical and charity-based framework to rights-based approach. Thanks to her efforts through InterAction, a consortium of 190 US-based international development organizations working on a variety of issues (e.g. disaster relief, health, and others) now adhere to specific standards on the inclusion of people with disabilities. Likewise, Susan has influenced national public policy to increase the number of people with disabilities in international educational exchange, through Mobility International USA’s US Department of State-funded National Clearinghouse on Disability and Exchange.

Though Susan is already recognized by many of her peers as having made a scratch on history, she continues to pursue pathbreaking work. Today, she is pushing the disability movement to accelerate the “rights paradigm” toward what she calls “infiltration.” Susan observes that recent efforts to further promote inclusive development have relied on convincing the development community to change. Her approach moves from a focus on advocating for “inclusion” to more direct “infiltration.” It is Susan’s conviction that people with disabilities must educate themselves on international development policies and practice, and then, literally, bring disabled people directly to existing programs. She is also mobilizing the disability community to provide information, expertise, and guidance to the development community, to ensure that people with disabilities will be successful as participants in their programs; while also applying pressure on funders to strengthen their policies on disability inclusion.

With over one billion people with disabilities throughout the world—more than half of them women—international development goals for education, health, poverty alleviation, and gender equity cannot be achieved without the participation of people with disabilities. Less than 2 percent of children with disabilities in developing countries attend school and the literacy rate of disabled women and girls is also less than 2 percent. Women and girls with disabilities, in particular, are among the most vulnerable groups, faring worse than non-disabled women or disabled men on most development indicators. There is a myriad of foreign assistance programs, which address social problems yet, people with disabilities are marginalized from development efforts, unable to access vital services, and perhaps most importantly, do not recognize their own rights to participate in development.

Building leadership capacity of people with disabilities, and changing the development paradigm to include people with disabilities as integral members of every vulnerable population, will result in their increased participation in the programs that strive to alleviate poverty around the world, such as entrepreneurship, microfinance, health, education, civil society, emergency response, food security, and water and sanitation.

The 2008 UN Convention on the Rights of Persons with Disabilities (CRPD) formally recognizes disability as a human rights issue and explicitly mandates development programs to ensure the rights and inclusion of people with disabilities. In addition, many countries have policies in place regarding disability inclusion by foreign aid agencies, including the US Agency for International Development (USAID) Disability Policy. However, the USAID Disability Policy is not being as effective as it could be because there are no ramifications for non-compliance.

Participation of people with disabilities in all mainstream development programs will benefit not only people with disabilities, but will transform societies by reducing stigma and discrimination and utilizing the contributions of people with disabilities as integral members of their community.

Susan initially founded MIUSA in 1981 to make it possible for people with disabilities to have the same international experiences as non-disabled people. She saw international exchanges as a way to unlock new and important opportunities to develop as full-fledged, globally savvy leaders in their communities. In the early 1980s, people did not realize the full potential of people with disabilities to be leaders in the field of citizen diplomacy.

Initially, MIUSA’s work focused on creating the field of inclusive international exchange programs. MIUSA began by organizing its own international exchanges—with the US both as a host and sender of participants—in order to pilot some of their ideas for inclusive leadership development. It was clear to Susan, however, that without getting the established international exchange field to embrace people with disabilities, opportunities would never be available to them at the scale needed. Furthermore, it was important that MIUSA not become yet another initiative that contributes to the segregation of people with disabilities. She began working with established organizations to build their capacity to start welcoming underrepresented populations in their programs. Susan also had to convince people with disabilities that they too were capable of becoming globally savvy changemakers and participants of such programs. MIUSA’s exchanges target both youth and professionals. The professional exchanges in particular are meant to allow emerging community leaders with experience in fields such as education, health, independent living, legislation, and transportation, to gain new perspectives about what is possible.

MIUSA has worked with more than 2,000 alumni from 100 countries. These alumni leaders are part of a global network of change agents—a cadre of new leaders ready to train others in their communities, not simply to be participants of programs and recipients of services, but to become decision-makers. They are guided by the motto: Challenge Yourself and Change the World®. The MIUSA exchange experience assists participants to network with people with disabilities from around the world and to develop the self-confidence necessary to advance a rights-based approach to disability work.

By 1995, with a proven track record, Susan was able to influence the U.S. Congress to establish funds that created the National Clearinghouse on Disability and Exchange (NCDE), sponsored by the US Department of State. MIUSA has administered this Clearinghouse since then. When MIUSA started its work, less than 1 percent of exchange programs reported that people with disabilities were participants. The NCDE also collaborates with disability-related organizations and international exchange organizations to ensure that people with disabilities are actively recruited and involved. Today, more than 50,000 people visit the MIUSA and the NCDE website per month.

In the same year the NCDE was established, MIUSA led a delegation of 350 women with disabilities to attend the International Women’s Conference in Beijing. Susan and her colleagues organized a seminar the day before the conference to ask all of these women what they wanted and needed. One of the outcomes was the realization that women with disabilities needed to network and share best practices with each other in order to start moving the disabled women’s agenda internationally. Susan and her peers characterize the Beijing conference as the birthplace of the disabled women’s movement.

The Beijing conference marked a couple of leaps for MIUSA. On the one hand it heralded a stronger focus on women’s leadership, and on the other a considerable broadening of the organization’s mission from changing the field of international exchange to ensuring that people with disabilities become included and full participants in international development agendas.

MIUSA’s stronger gender focus led to the launch of the Women’s Institute on Leadership and Disability (WILD), a signature program. The institute regularly brings emerging grassroots women leaders with disabilities from around the world to build new skills (i.e. around the use of media and policy advocacy and implementation), exchange experiences and strategies, create new visions and strengthen international networks of support. Of the 175 WILD women from 80 countries who have participated, many have gone on to become ministers and executive directors, and to affect larger scale change than they had previously thought possible in their home communities.

The transition toward international development also meant that MIUSA began to actively “recruit” international development organizations to become inclusive of people with disabilities in their initiatives. For example, through a USAID-sponsored project, MIUSA worked with USAID mission offices in six countries to build partnerships with the disability community and to implement the USAID policy on disability inclusion. After undertaking capacity-building projects with a number of government and citizen organizations (COs), she identified a powerful lever to affect a much larger group of influential organizations.

Most importantly, Susan partnered with InterAction—the largest alliance of US-based international COs in every developing country. There, she led efforts to develop and adopt Private Voluntary Organization Standards on Disability. Every member organization is evaluated each year for compliance against these standards and MIUSA offers technical assistance for those who need it to turn the norms into practice on the ground. She also established the Disability Working Group and the Disability Inclusion Award, a recognition which incentivizes InterAction members to highlight their successful inclusion efforts.

For this work, Susan has become one of the few internationally recognized entrepreneurs significantly moving the needle in the disability rights and development fields. Susan realizes that continuing to push these changes in the same way will only lead to moderate impact at this point. This is why she is focusing the next phase of her work on infiltration—getting people with disabilities to stop waiting for the change and start showing up at programs though those may not be fully ready for them. Infiltration, she believes, will accelerate the rate of change in the international development industry. This requires a significant mindset shift for a large portion of the population she works with who need to first recognize that they have a right to sit at the “table” and that the “table” even exists.

In order to build this movement of infiltration, Susan is tapping into the strong networks she has been building over the last 30 years. With more than 2,000 international exchange alumni and 175 women leaders on her side in more than 100 countries, Susan has an “army” of people who can deploy this new framework within the disability rights movement. She also plans to spread her framework by working through close partners such as InterAction, Global Partners in Disability Development, and several Ashoka Fellows’ organizations. In addition, Susan recognizes it will be important to spread the concept of infiltration and its implications through influential publications, both in the disability field and international development arena.

Susan recognizes that if she can influence funders to more adamantly adopt an inclusion framework, their grantees will ultimately respond to this demand. She hopes to establish a Clearinghouse that will assist international development organizations to build their capacity to successfully respond to more people with disabilities “infiltrating” their programs.

Susan became a wheelchair rider at the age of 18, ironically while she was studying to work with people with disabilities. The unusual life experience of seeing what it’s like on both sides has given Susan a distinct understanding on the inclusion of people with disabilities.

As a wheelchair rider, Susan had the opportunity to live in Australia on a Rotary Scholarship. Through this life-changing experience, she realized the power that international exchange had in terms of making future leaders, furthering citizen diplomacy, and breaking down cultural barriers. She was shocked to learn that people with disabilities were rarely considered for such opportunities and founded MIUSA to address this gap. As the years went by, Susan realized that MIUSA had a role to play not just in the realm of international exchanges but more broadly in ensuring leaders with disabilities affected international development agendas.

Prior to MIUSA, Susan co-founded the Berkeley Outreach Recreation Program while she was a student at the University of California, Berkeley. The Berkeley Outreach Recreation Program was led by people with disabilities and challenged the prevailing therapy model to focus on the right of people with disabilities to recreation and sports. To this day, it remains a model organization focused on providing recreational programs for people with disabilities utilizing a human rights approach. Susan is energized to dramatically scale up MIUSA’s impact by changing the paradigm for her field from inclusion to infiltration.