The US needs to lead again on disability rights

There are more than one billion disabled people worldwide.

That’s about one in seven people — and these numbers are only growing. People acquire disabilities through natural disasters, conflict, military service, age, climate change and disease (including diseases that we, as Americans, rarely see). 

In 2010, I was appointed as the State Department’s first special adviser on international disability rights. This was the natural progression of American leadership: the landmark Americans with Disabilities Act (ADA) — which will celebrate its 30th birthday next year — has become a global gold standard, and served as the foundation for the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

However, the special adviser position has been vacant since January 2017, and the U.S. has been noticeably absent from international disability rights fora.

American leadership on disability rights has eroded. There is still real political will within the State Department to promote the rights of disabled people, and highly capable staff to implement this vision, but the authority, access and respect garnered by a high-level political appointee is the missing piece. The right leadership will elevate the Office of International Disability Rights; put a much-needed disability lens on State’s everyday work; and give international disability rights its rightful place in leadership conversations on funding, resources and inclusion. 

There are ambassadors-at-large and special envoys for other critical issues and groups, including the Office of Global Women’s Issues; Trafficking in Persons; Monitoring and Preventing Anti-Semitism; and International Religious Freedom. Yet, because the special adviser position remains empty, there is currently no political appointee dedicated to the rights of disabled people, which — at 15 percent of the global population — is one of the largest minority groups in the world. 

Beyond the sheer size of the disabled population, international disability rights is simply good policy. Disability rights are human rights, and the core of State’s mission is to advance the human rights of all people worldwide. The political participation and leadership of disabled people, including those who belong to other underrepresented groups such as women, young people and internally displaced people, is crucial to resolving conflict and sustaining peaceful and prosperous democracies.

In short, the U.S. needs to be doing more — not less — on disability rights. 

Fortunately, Congress is taking action. Both the House and Senate are introducing versions of the Office of International Disability Rights Act, which would codify the Office of International Disability Rights at the U.S. State Department (within State’s Bureau of Democracy, Human Rights and Labor); mandate a high-level political appointee to lead the office; and require a State-wide disability policy — something the agency currently lacks. H.R. 3373, the bipartisan House-side version of the act, already has 25 co-sponsors. 

This bill is critical. In government, titles do matter, granting access and sparking responsiveness both within State and abroad. With the authority granted to me as the special adviser, my team and I improved inclusion agency-wide and helped raise the visibility of and respect for disabled people. For example, after the establishment of a politically appointed disability position, U.S. embassies all over the world began to substantively engage with the disability community. The perspective and information provided by disabled persons organizations provided a critical, previously unheard perspective, resulting in strengthened annual country reports on human rights and trafficking in persons. 

Furthermore, before the creation of the international disability rights team, there was not a single disabled person participating in the Young African Leaders Initiative (YALI). By 2017, there were 65 disabled YALIs. This leap was only possible because I, as the special adviser, happened to be in the right meeting at the right time. How many opportunities is State currently missing, every day, to advance the human rights of disabled people, simply because there are no disability rights staff with access to the high-level conversations where critical decisions are being made?

A high-level disability position and International Disability Rights Office also facilitates the empowerment of organizations and programs committed to elevating the rights of disabled persons. For example, I worked closely with the International Foundation for Electoral Systems (IFES), an organization that proves great things can be accomplished when disability is truly mainstreamed. IFES strengthens political inclusion by providing technical assistance to electoral management bodies on how to implement international standards (such as the Convention on the Rights of Persons with Disabilities); empowering disabled people and civil society organizations to advocate for equal rights; and assisting citizen-led efforts to define best practices through the development of global tools such as ElectionAccess.org. 

I applaud the work of Congress’s disability rights champions, including Rep. Dina Titus (D-Nev.) and Sen. Bob Casey (D-Pa.), who — among many other things — spearheaded a bipartisan, bicameral resolution recognizing the International Day of Persons with Disabilities on Dec. 3, 2019. But we must do more. 

The inclusion of disabled people is a fundamental part of democracy and essential to the full realization of human rights. It is simply too important an issue to be left to the whims of subsequent administrations; we must ensure it is prioritized across presidencies and secretaries of State. I call for members of Congress to support the Office of International Disability Rights Act in both Houses, and for the House Foreign Affairs Committee to mark up H.R. 3373 as soon as possible.

With the passage of the Act, America can once again lead the world in international disability rights, and disabled people can take their rightful place in communities worldwide.

Judith E. Heumann is an American disability rights activist, and served as U.S. Department of State special adviser for international disability rights.