José Ramirez, Jr: Dispelling Myths about Leprosy

6 August, 2018 | Global Partnership for Zero Leprosy

José Ramirez, Jr. is a leadership team member for the Global Partnership for Zero Leprosy and is the board chair for the International Association for Integration, Dignity and Economic Advancement (IDEA). He has also personally experienced leprosy. José, from Laredo, Texas, was diagnosed with leprosy as a teenager and lived for 7 years in the national leprosarium at the time, the U.S. Public Health Hospital in Carville, Louisiana. His treatment involved experimental drugs that led to multidrug therapy. While he was eventually cured, this experience led him to champion the rights and dignity of all people. Currently José works as a licensed social worker.

Jose Ramirez
José Ramirez, Jr., who has experienced leprosy himself, is a leadership team member and board chair for IDEA.

When did you become an advocate for persons affected by leprosy?

I first became aware of how differently persons with leprosy were treated when I was hospitalized in Carville. An imaginary line existed between staff and patients. Our dining hall separated patients and staff. Even at the Sacred Heart chapel in Carville, leprosy patients had to use a separate communion chalice.

Later in life, I was invited to speak at the Centennial Anniversary of the Carville hospital in 1994 and realized that I had been fortunate to have the support of my family. Many people with leprosy are ostracized by their own family. I also traveled to Japan with the support of The Nippon Foundation in 1996. After the Leprosy Prevention Law of Japan was repealed in 1994, my leprosy brothers and sisters could leave the sanitoriums and participate in the community. I visited 10 of the 13 sanitoriums, visiting the people who had lived there. I became an advocate and spokesperson shortly after that.

You’re the board chair for IDEA, the first international advocacy organization whose leadership is primarily made up of individuals who have personally faced the challenges of leprosy. What does IDEA do and how does it make an impact?

We’ve been around since 1994 and will be celebrating our 25th anniversary next year. IDEA has thousands of members in 24 chapters. We have one staff person, otherwise, it’s run by volunteers. We’re experts in the field—not from a medical perspective, but from having lived it.

We’ve had a big impact. We’ve completed oral histories of individuals who have experienced leprosy. People were getting older and we wanted to make sure their stories will be remembered. IDEA has created art and educational exhibits throughout the world.

IDEA also identifies discriminatory laws, writes about them and advocates for repeal. Education has been one of our main goals. We promote terminology that respects individuals and reject labels like the “l” word used in the Bible. All of these activities are to show that leprosy is not about medical papers or photos of hands or feet—but about individuals. Our tagline is “inclusion is our language.”

It’s amazing that IDEA has been around 25 years and it’s run by volunteers. Why do you and other IDEA members continue to do this work year after year?

We’re doing it to make sure the struggles of persons who have gone before us are not forgotten. The people before us set the example for us to continue this advocacy work and make a change. Zero leprosy is not just about the medical issues.It is also about ending discrimination, lessening stigma, and making sure that we all have basic human rights.

Zero leprosy is about ending discrimination, lessening stigma, and making sure that we all have basic human rights.

Leprosy can be easily cured if caught early, but many people are afraid to seek help. What are some ways societies can address the fears around leprosy?

  1. Attack the myths. Make sure people understand that leprosy is curable and not a punishment from God.
  2. Help others better understand what stigma is all about. Most people hear about stigma from a researcher and how it’s measured. I have a simple definition: it’s an act of labeling, rejection, or unexplained fear of something people don’t understand. All of this is due in large part to misinformation and negative images about leprosy.
  3. Make sure young individuals get an introduction to what leprosy is all about. In Brazil, India and Japan, elders go to schools and educate young people about the disease.

How can individuals be more supportive and understanding of people living with leprosy?

Whenever I do public speaking about leprosy, I tell the audience that I’m charging a fee. The fee is that each person in the room has to communicate 5 new pieces of information to 5 people by the end of the week. The information can be to dispel myths or to simply correct pejorative terminology like the biblical “l” word. Listening, responding and correcting individuals is useful—and it’s very simple.

Leprosy is the only disease mentioned in the Bible, and its reputation crosses oceans and country boundaries. The only way the myths can be stopped is by changing people’s perceptions.

Do you feel you’ve personally made an impact?

As an individual I believe I have made an impact. Recently, I, along with others, advocated for funding to be restored in U.S. Hansen’s disease clinics after it was initially cut.

I’ve also written letters to my newspaper editor. If I write a letter to the editor for my Houston newspaper, I know at least 10,000 people are reached. An animated movie came out several years ago with a pirate called a “leper.” I saw the preview and initiated steps not to have it shown. The producers actually changed it.

Little things can make a difference.

Read more about José’s life story and experience with leprosy:

Natalie Angier, “Leprosy, Still Claiming Victims,” The New York Times, June 30, 2014
“Speaking Up for the Unseen: Ending Discrimination Against People Affected by Leprosy,” The Nippon Foundation, 2013
John Nora Lomax, “Love in the Time of Leprosy,” Houston Press, July 29, 2009
Mike Shea, “Squint: My Journey with Leprosy,” Texas Monthly, May 2009
“Author Recounts his Journey with Leprosy,” All Things Considered, NPR, February 1, 2009
José Ramirez, Jr., “Squint: My Journey with Leprosy, University Press of Mississippi, 2009