Changing Perceptions in Ecuador

Detroit News - Disabilities Blog

By Richard Bernstein
December 1, 2010

Imagine living life as a social outcast. Think about what it would be like to live in a nation where you were viewed as being the bi-product of evil-doing relatives that had gone before you. Imagine being perceived by members of your own community as being cursed, without having uttered a single word or performing a single act to define who you truly are as a human being.

Upon traveling to South America, I was struck by the harsh realization that this was similar to what life is like for people with disabilities living in developing nations like Ecuador. When I was asked by the Ecuadorian government to visit and experience what life is like for disabled people in their beautiful country, I hadn't a clue what I would be faced with. What I came to discover is that many of the social perceptions of people with disabilities are similar to the perceptions people had in Medieval times.

At first, I was awestruck. But as I began to think about how the Ecuadorian culture was modeled and how these perceptions were formed, I began to understand and empathize with the Ecuadorian people--they had never known anything other than this. It was my job to change that.

In coalition with the Ecuadorian government, the mainstream media, and the Ecuadorian universities, my role was to transform the perceptions of people with disabilities in their country using athletics as the model. In rural areas outside of the major cities and university communities, the general perception of individuals with disabilities is this: people who have visible disabilities (i.e. developmental disabilities or physical disabilities) are seen as the products of parents who were evil-doers, and thus are cursed for past actions that are beyond their control. Often in these communities, children with disabilities are not permitted to live indoors with their families, therefore banished to live with the animals. In addition, they are forbidden to even go out in the community because it would be perceived as being a bad reflection on their parents.

Shocked at the realization that this presented, I approached my role as a stimulus for change with managed expectations, knowing that these perceptions would be impossible to change overnight.

Equally shocking was how amenable the nation of Ecuador was to breaking down these ill-formed perceptions of the disabled. The vice president of Ecuador, a wheelchair user, expressed to me how deeply he cared about improving the lives of people with disabilities in his country, to serve as a model for developing nations and about how spectacular the lives of disabled people are when they are given the opportunity to live their lives free of ill-formed stereotypes. As I traveled the country, I had the opportunity to speak to various groups of young students in universities, and I participated in two major interviews with South American mainstream magazines to speak about how, using athletics as my vehicle, awareness of disability issues could heighten their understanding of individuals with disabilities and transform their culturally embedded perceptions. Knowing their profound cultural respect for athletic achievement and idolization of athletes, I explained that by completing 13 marathons and one Iron Man Triathlon, surely a "cursed" individual could not have achieved such success as this.
I spoke with managed expectations, but I also spoke with hopeful exuberance, because whatever effect I could have on someone in a developing nation such as Ecuador could be a profound one. Upon my departure, I had a sincere love for Ecuador and an excitement for what the future holds for it and other developing nations.

My next step is to return to South America. By working in conjunction with athletic organizers, the government, and more intensive media outlets, I hope to continue to change the way Ecuador and other developing nations treat their citizens with disabilities. I'm already scheduled to compete in a triathlon in the Galapagos Islands to serve as a continuation effort to destroy ill-formed perceptions.

As a result of my trip, I realized how blessed I am to live in the U.S. We've made tremendous strides toward people with disabilities. But we still have work to do, and it's time to focus on the next step -- changing the lives of people with disabilities in developing nations in an effort to change the world.