You have been on a remarkable personal journey. Can you share more about your story?
I was born in India and grew up in Canada. When I moved to the United States, I honestly wanted to have an adventure, similar to some of the incredible things that I had done around the world, having worked with the United Nations humanitarian agencies in 10 different countries, predominantly in post-conflict and humanitarian settings.
I was enthralled with the idea that the Grand Canyon was a natural wonder of the world, and discovered that for every five or six million people who visit the rim of the Grand Canyon, only one percent go down. I wanted to be a part of the one percent, so I planned an expedition.
Around that time, I was at the beginning of unlearning my own ableism, having only been diagnosed with a rare progressive muscle wasting disease called hereditary inclusion body myopathy (HIBM) at the age of 30. So, challenging perceptions about what I could and could not do was a very big theme in my life. Even now, much later in my disease, I still love to do these daring things, and I love the idea of being part of a one percent, but I’m doing it in a much different way. It’s about dismantling the barriers around me, because I’ve dismantled the ones inside myself already.
My experience through the Grand Canyon is the subject of “Facing the Falls,” a short documentary film directed by Celia Aniskovich, produced by Elizabeth Yale Marsh, and executive produced by Hillary and Chelsea Clinton. It is a culmination of 10 years of passion and purpose.
The film will be free on YouTube starting on December 3, in celebration of the International Day of Persons with Disabilities. The film is made with open captions and audio description. We want it to be as accessible and barrier free as possible for as many people around the world as possible.
What insight would you share with other disabled people who want to share their stories with the world?
The advocacy I do now is focused on sharing my story to highlight attitudinal, physical, and institutional barriers I face, but I had to learn so much to reach this point. I think particularly for people who have been newly diagnosed, who don’t have a community of disabled people around them, who might not necessarily have the language, and who are being bombarded by the harmful stereotypes and euphemisms that we see everywhere, it can be a challenge to figure out how to communicate your story. So, my advice is to find your people.
The first time I went out in public in my wheelchair, disability rights activist Judy Heumann, who also used a wheelchair, rushed over to me. That moment of solidarity did so much for my confidence and comfort in a new space, in a new culture. If you invest in finding your people, you will learn how your story is valuable to the movement. You will learn how telling your story will help you, rather than perpetuating stereotypes and pigeonholing yourself into a space where people feel sorry for you, rather than respecting you and treating you with dignity.
I also encourage learning the history of the movement, because my disability pride has come from those who came before me. I’m proud to be a part of this incredible, global, feisty, powerful, honest, authentic community.
You’ve done quite a bit of international disability advocacy. In light of December 3rd being the International Day of Persons with Disabilities, why is it so important to have a global perspective on disability?
The fact that I have worked in human rights my entire career has led to the perspective I have. I live in America now, and I’m a citizen, but I was raised in Canada, and I have the perspective of how fortunate I am to have a roof over my head, my education, my career. This is a difficult point to make, because we don’t want people without disabilities to be thinking that they shouldn’t take things for granted simply because they aren’t disabled. But I was working in countries where children were dying of mosquito bites, and in contrast, I had access to the Canadian health care system.
And as I became more well versed in both international and American disability rights, I came to understand what it means to have the law protect you. What does it mean to know your rights? What does it mean to demand your rights? What does it mean to raise awareness? What are the policies in place and the programs available?
I think we must be open minded to learn from advocates around the world and the ways they have been innovative in systems and in cultures that aren’t, as we may say, as privileged. And we must realize that we still have major gaps in the United States when it comes to inclusion and rights of people with disabilities. Within the realm of disability diplomacy, as we call it, this country has an enormous responsibility and needs to step it up.
What disability rights issue is your biggest advocacy priority right now?
In natural disasters, conflicts and humanitarian crises, people with disabilities suffer the most. I am part of a collective called Disability Justice for Palestine, international activists with and without disabilities, working in solidarity with people with disabilities in Palestine and the Palestinian Disability Coalition, which includes organizations of persons with disabilities, self-help groups, and activists with disabilities in Gaza and the West Bank. They, and their families, lack protection and access to inclusive humanitarian aid. Without medicine or rehabilitation their impairments worsen. And new disabilities without proper care or assistive aids, like amputations, are devastating. So, I advocate for their safety and protection to be met through funding and policy.
Governments and humanitarian agencies must hire disabled experts. There is a moral, ethical, and legal responsibility to bring us to work on your teams to create multifaceted solutions. And the voices of those most impacted must lead our action. It’s their lives, their community, their culture, their wants, desires, needs, agency, self-determination and dignity that must lead our work.
Looking ahead, what’s next on your exciting journey?
When Judy Heumann unexpectedly left us, she left a lot unfinished. The next big phase of my life will be dedicated to ensuring that Judy’s legacy is front and center. The last 25 years of her life were spent predominantly on international work, and we can pick up where she left off and carry that torch.