SAIDR Sara Minkara (center with white face mask) speaks to one of the students at the Lalla Asmaa Foundation during a visit to Morocco, March 23, 2022. During her visit, Minkara commended the Lalla Asmaa Foundation for providing quality inclusive education to students who are deaf and hard of hearing. Photo by Yassine Ameur
By Andrea Cilliers
On March 4, Judith “Judy” Heumann passed away, leaving an indelible mark on the international disability rights community. To say Heumann was instrumental in the disability rights movement is an understatement, for she embodied the collective fight for the rights of all people with disabilities via her myriad roles and platforms. Legislation such as the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act, and the U.N. Convention on the Rights of Persons with Disabilities (CRPD) would not exist without Heumann’s leadership alongside her pioneering fellow advocates.
The Department of State was fortunate to call Heumann a colleague, as she held the first appointment as the special advisor on international disability rights (SAIDR) during the Obama administration from 2010 to 2017. During this time, she and her team traveled the world to meet with persons with disabilities, civil society organizations, and governments to share how everyone can use their voice to champion and advocate for disability rights. They also collaborated closely within the interagency to amplify the perspectives of persons with disabilities around the world. Their efforts also sought to shape U.S. diplomacy and development in such a way that it is informed by and inclusive of persons with disabilities.
In November 2021, President Joe Biden appointed Sara Minkara to the role of SAIDR, to help carry Heumann’s legacy forward and position the Department as a leader in international disability rights. Since then, Minkara and her team have identified four focus areas for their office to incorporate across the Department’s policy and programming work. These areas include: accountability and capacity building; disability-inclusive democracy; advancing respect for human rights in moments of crisis; and disrupting the narrative on disability.
Fostering Department-wide, civil society, and foreign government capacity building and accountability for the effective promotion, protection, and advancement of the rights of persons with disabilities is a key component of the SAIDR team’s work. Internally, they strive to create a workforce capable of implementing disability-inclusive diplomacy, while also providing technical assistance and universal access to bureaus and U.S. missions abroad. Externally, the team works to encourage foreign governments to enact and enforce national laws and policies and respect their obligations under CRPD—a framework for creating legislation and policies that respect the rights and dignity of all persons with disabilities—and other human rights treaties.
Though the United States has not yet ratified CRPD, more than 180 countries have. However, implementation remains challenging. The United States is committed to working with those countries that have ratified CRPD, to promote the effective implementation of their legal obligations under the treaty. When countries do not sign CRPD they still need technical assistance, but if they do sign there are different needs and regulatory commitments—Minkara and her team continue to work with countries that have signed CRPD and those that have not to advance disability rights.
Advancing disability-inclusive democracy to ensure that persons with disabilities have access to and are included in democratic processes is another key component of SAIDRs work. In March 2022, Minkara traveled to Lebanon to promote the rights of persons with disabilities ahead of Parliamentary elections scheduled for May of that year. Throughout her engagements, she underscored how inclusion brings value to societies as a whole and emphasized the importance of shifting from a charity-based model to one that recognizes the value and rights of persons with disabilities.
In December 2021, during the Summit for Democracy Year of Action, the Department—including the SAIDR team—collaborated with USAID, the U.S. Mission to the U.N., and the International Foundation for Electoral Systems to host a formal side event on “Disability-Inclusive Democracy: Building Participatory Societies” at the 15th Conference of States Parties to the Convention on the Rights of Persons with Disabilities. The event afforded leaders an opportunity to consult with external stakeholders to capture data on innovative approaches and common challenges to promoting disability-inclusive democracy globally.
Additionally, following the White House launch of the Disability Inclusive Democracy Year of Action at the Summit, the Department dedicated $7 million to support governments in designing more inclusive political processes and to empower persons with disabilities to advocate for their human rights.
In February 2022, the Department showcased its dedication to and leadership on disability rights during the Global Disability Summit (GDS). Through the work of the SAIDR team, the Department submitted seven commitments to be achieved by 2026, joining additional commitments from USAID. This was the first time the United States has made GDS commitments, marking an important step in promoting inclusive values.
Mainstreaming disability to ensure that persons with disabilities are protected in times of conflict, disaster, or other humanitarian crises is another key area that SAIDR focuses on. By working with stakeholders to include persons with disabilities and their representative organizations in the emergency planning and response processes, SAIDR is helping to advance respect for human rights in moments of crisis. For example, Minkara traveled to Romania and Moldova to learn about the evacuation efforts from Ukraine and the gaps for persons with disabilities receiving care and resources in August 2022. Her team continues to coordinate a bi-weekly call with NGOs around the war in Ukraine to connect government and NGO partners around this critical topic.
The last area of focus for the SAIDR team is shifting the prevailing paternalistic, medical, and charity-based perspectives toward a human rights and value-added lens that highlights persons with disabilities as rights-holders with diverse skills, innovations, talents, and contributions.
In 2022, SAIDR secured the United States as co-chair of the Global Action on Disability (GLAD) Network, a coordination body of bilateral and multilateral donors, foundations, and coalitions of the disability movement with a common interest in achieving inclusive international development and humanitarian action. The first major role in this two-year term was to co-chair the GLAD membership meeting on the margins of the 2022 Conference of States Parties to the Convention on the Rights of Persons with Disabilities. As co-chair, the United States is positioned to continue ongoing engagement to integrate disability rights into foreign policy.
Each generation must build upon the efforts of previous generations in order to create a solid foundation for the next generation. Heumann said it best, “Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.”
Advocating for human and civil rights is no small task, but it is essential to advance the lived experience for persons with disabilities. While continuing Heumann’s legacy, the SAIDR team recognizes that they cannot do this work alone. Together with colleagues around the world, they hope to carry this critical mission forward.
Andrea Cilliers is chief of staff in the Office of the Special Advisor for International Disability Rights in the Bureau of Democracy, Human Rights, and Labor.