Disability inclusion is ‘not a favor’: Biden’s special adviser discusses how equity adds value for everyone worldwide

Sara Minkara, the US State Department's special adviser on international disability rights, recently visited her home state of Massachusetts.David L. Ryan/Globe Staff

When Judith Heumann, hailed as the mother of the modern disability rights movement, died this month, Sara Minkara said she felt like she had lost her second mother.

Heumann served as the first-ever special adviser on international disability rights for the State Department, a position created during the Obama administration. Minkara, now the second person in the role after President Biden revived it in November 2021, spearheads the effort to protect the rights of people with disabilities across the world.

“When I got appointed, [there were] big shoes to fill,” Minkara said.

Minkara, a Lebanese-American raised on the South Shore and an alumna of Wellesley College and Harvard University’s Kennedy School of Government, founded nonprofit Empowerment Through Integration as a student at Wellesley, providing services to children with disabilities abroad. She then founded and served as CEO of Sara Minkara LLC, a company promoting inclusive and value-based leadership.

Minkara visited her home state recently, her first official visit since her appointment. She sat down with the Globe to discuss her priorities and goals for inclusion in the US and abroad.

Responses have been edited for length and clarity.

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How did you get involved with advocacy and nonprofit work?

I grew up in the Boston area suburbs and went to the public school system in my town. I became blind at age 7. My sister is also blind and because of my parents, especially my mom, we continued living our life. She pushed us to really embrace our disability from a point of strength.

Growing up, we used to visit Lebanon during the summers because it’s where my parents are originally from, and this is where I was really exposed to the narrative of pity, shame, “I feel bad for you.” And ultimately, I used to think to myself, if I grew up in that narrative, I wouldn’t be here.

In college, I was a math and economics major, but I ended up starting my nonprofit when I was at Wellesley, which I ran for over 10 years, and we did work all over the world. The work focused on how you empower youth with disabilities and really get them to embrace their true potential, but then also, how do you change the systemic aspect of inclusion?

What is your role as special adviser?

Our mission is advancing the rights of persons with disabilities. But we bring it through the value-based narrative. Right now, we talk about disability rights from a point of “it’s a human rights issue,” which it is, but I want to take a step further. When we’re not including 16 percent of the population, we’re losing out on their value, their contributions. We’re losing out on so much. Why don’t we tell that story?

Inclusion, accessibility — it benefits everyone. It’s not a favor, it’s not a burden, it’s a value for everyone. That’s an area we’re trying to bring forward.

What are your policy priorities in this role?

We have four main priorities. One is fostering accountability and building capacity. Most countries have ratified the UN Convention on the Rights of Persons with Disabilities. How do we take that and turn it into implementation of disability policy? How do we bring forward accountability?

Priority two is promoting disability-inclusive democracy. We need the voices of persons with disabilities to be heard across the board, political participation, running for office, voting.

Third is crisis and disability. Whether it’s a [natural disaster] like in Turkey and Syria, whether it’s a conflict in Ukraine, how do we make sure persons with disabilities are at the table, from planning to response to making sure that rebuilding and reconstruction is inclusive of persons with disabilities?

The last priority is how do we disrupt the narrative surrounding disability? How do we really make sure we’re partnering up with folks to bring forward this value-based narrative?

Since I started, we’ve visited 20 countries [spanning] the Middle East to Africa, Europe, East Asia, and South Asia. We focus on one or more of these four main priorities. For instance, in Nigeria, we focused on their upcoming election, which happened this past February, on disability-inclusive democracy. In Lebanon, we help them move forward to signing the ratification of the CRPD, which is in the final stages right now. In Moldova and Romania, we focus on Ukrainian refugees with disabilities.

Where are we coming up short in terms of including people with disabilities?

I would love for everyone to see disability inclusion as part of their own work. I would like every single entity, sector, sphere, individual, and company to take on that shared responsibility. This is where we fall short. We’re not having enough difficult conversations around why we’re leaving people with disabilities behind. Let’s create shared responsibility, then let’s build the capacity to take that work forward. There are 1.2 billion individuals in this world with disabilities. A lot of times, we’re not seen, we’re not heard, and we’re not valued.

What’s it like to be back in your home state?

I love the city. I love the state. We came to speak at the annual Arab Conference at Harvard, and then we had meetings with the city of Cambridge, the city of Boston.

Ultimately, the reason why we’re doing this is because we’re connecting the domestic and the international. We want to share good promises and practices to the international community. We want to make sure that we’re shedding light on the amazing work that people and entities are doing here in Boston and bringing it forward, but also we’re trying to identify ways that we can do better.