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U.S. special advisor on the needs of people with disabilities worldwide

The Paralympic Games' WeThe15 aims to end discrimination towards persons with disabilities and act as a global movement publicly campaigning for disability visibility, inclusion and accessibility. (Stuart C. Wilson/Getty Images for International Paralympic Committee)
The Paralympic Games' WeThe15 aims to end discrimination towards persons with disabilities and act as a global movement publicly campaigning for disability visibility, inclusion and accessibility. (Stuart C. Wilson/Getty Images for International Paralympic Committee)

Judy Heumann is lauded as the mother of the modern disability rights movement. She served as the first special advisor on international disability rights for the U.S. State Department in the Obama administration. After her passing last weekend at the age of 75, Sara Minkara has taken over the role.

Minkara says that while the U.S. is seen as a leader in disability rights worldwide, there’s still work to do. And people with disabilities must be involved in every step of that work to ensure accessibility needs are met.

“When we talk about accessibility, we need to make sure I am comfortable as a person with a disability to bring my true full self forward,” Minkara says.

Full interview transcript:

Celeste Headlee: It’s Here & Now. We’re reflecting on the life of disability rights activist Judy Heumann, who died over the weekend at age 75. Heumann was known as the leader of the modern disability rights movement. She was the first to serve as the State Department’s special adviser on international disability rights, a position created by President Obama. In this role, Heumann fought for the rights and protection of the more than 1 billion people in the world who live with a disability. Sara Minkara continues Heumann’s work. She’s the current special adviser on international disability rights at the State Department. And Sara, it’s a pleasure to have you.

Sara Minkara: Thank you, Celeste. It’s great to be here.

Headlee: I understand you knew Judy personally. How would you want her to be remembered?

Minkara: Oh, Judy is a mother to so many, a grandmother to so many, a mother of disability, someone who empowered millions, I think, of people across the globe, someone that has left an amazing legacy of impact. You know, the past few days when we found out the awful and horrible news on Saturday, a lot of us have been mourning. The disability community has been mourning. The friends that the disability community has been mourning. Because she’s been, in so many ways, an amazing and dear friend, mentor, ally, mother to all of us.

Headlee: And I’m certainly really sorry for your loss. She leaves a big hole in the nation, not just for those who are part of the disabled community, but she also leaves behind this position that you have taken. She was the first to serve and you are now picking up this mantle from her. What is the goal of your work as the special adviser on international disability rights?

Minkara: You know, first, it’s really big shoes to fill. You know, she, in being the first to serve in this role and now in the past year or so that I’ve been traveling the world, her legacy is there. Every place I’ve been to, people remember her impact and remember the work she’s done around, you know, bringing forward the expertise and the learning lessons from the [Americans with Disabilities Act], the [Convention on the Rights of Persons with Disabilities], and just a lot of that work. She really put it forward and put disability at the table. And from my end, it’s how do we continue that work? How do we continue her legacy? How do we continue getting the global community to see the value of the inclusion of persons with disability? How do we make sure that the 1.2 billion individuals in this world with a disability are seen, are heard, are valued? And again, it’s not just promoting the rights of persons with disability. That is the core basis of our work, but also how to bring the value of persons with disability to the system at large and make sure that we’re benefiting from that.

Headlee: You have visited some places where there have been conflicts, where there has been unrest, both disasters, natural or not, and wars can really complicate life for everyone, but especially people with disabilities. We spoke with activist Anna Landre about the conditions for people with disabilities in Ukraine, and she says people in that community are often left behind. Have you seen this as well?

Minkara: Definitely. I mean, the disability perspective, the disability voice, persons with disabilities are left out when it comes to the space of conflict and crisis. This is why I say we need to bring the disability community into the planning phase, bring them to the table, have them design the response, have them design, be part of the designing of the aid, have them make sure they’re, from the get-go, at the table. And when they are at the table from the get-go, then our response is going to be more inclusive and accessible and reaching the disability community. There’s a phrase in the world, ‘nothing about us without us,’ in the disability world, right? ‘Nothing about us without us.’ I actually take that a step further and I say, ‘nothing without us.’ Make sure the disability community is at the table from the get-go on all issues, not just, you know, ‘Oh okay, great. Now we need to bring in the disability community. No, it needs to be from the get-go.

Headlee: The Americans with Disabilities Act was signed into law more than 30 years ago. Obviously, it was a landmark achievement, but the U.S. still lags behind other countries in the world in terms of fully integrating people with disabilities, not only in the decision-making process, as you just mentioned, but in the design of our systems, our buildings, our transportation. What might we learn in the U.S. from other countries that have made more strides in improving services for people with disabilities?

Minkara: I mean, I actually would say U.S. is the leader when it comes to disability. Our ADA law and legislation is still looked towards as an example across the globe. Wherever I travel, people are looking towards the ADA and our enforcement provisions and our implementation. Not to say there’s not still work to be done in terms of how do we continue moving forward towards a more inclusive world. When we look at inclusivity across employment, right, and employment of persons with disabilities, there’s a lot of work still to be done. I always reference this article that Accenture came out with a few years ago that showcases that businesses that hire persons with disability, it helps their profit margin, their bottom line. So how do we really bring forward that narrative and really get across-the-board businesses, the employment sectors say, ‘we need to employ persons with disability because it brings value to our system’? That’s one layer. Then how do we bring forward and make sure we are building an inclusive and accessible space? I also talk about accessibility not from a technical lens, but also from an adaptive lens. How do we build a culture of accessibility? It’s not enough for me to be at the table. The question is, am I comfortable bringing my true authentic self to the table? And that’s the question. When we talk about accessibility, we need to make sure I am comfortable as a person with a disability to bring my true full self forward.

Headlee: Sara Minkara, special advisor on international disability rights at the U.S. State Department. Such a pleasure. Thank you for your time.

Minkara: Thank you so much, Celeste.

This article was originally published on WBUR.org.

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