A Conversation with Claire Manes

Out of the Shadow of Leprosy: The Carville Letters and Stories of the Landry Family presents a personal, first-hand account of the trauma and impact on one family facing leprosy. 

In 1924 when thirty-two-year-old Edmond Landry kissed his family good-bye and left for the leprosarium in Carville, Louisiana, leprosy, now referred to as Hansen’s Disease, stigmatized and disfigured but did not kill. Those with leprosy were incarcerated in the federal hospital and isolated from family and community. Phones were unavailable, transportation was precarious, and fear was rampant. 

Edmond entered the hospital (as did his four other siblings), but he did not surrender to his fate. He fought with his pen and his limited energy to stay connected to his family and to improve living conditions for himself and other patients. 

Author Claire Manes, Edmond’s granddaughter, lived much of her life gripped by the silence surrounding her grandfather. When his letters were discovered, she became inspired to tell his story through her scholarship and his writing. Out of the Shadow of Leprosy presents her grandfather’s letters and her own studies of narrative and Carville during much of the twentieth century. 

Edmond (right) and an unidentified
man at Carville

For more information about the book, news and events see www.leprosysecrets.com 

Below is a conversation with Claire Manes where she discusses the secrecy surrounding her grandfather, her research into her family's past and the current understanding of leprosy.

How long did it take you to write the book?

I never knew my grandfather who died thirteen years before I was born. I had absorbed my family’s ethos that we did not talk about him, but I always wanted to know him.  From that perspective, I have been working on this story for almost sixty years hoping to discover him despite my family’s silence.

Then thirteen years ago I read letters that my grandfather had written to his family from business college, the Army during WWI, and Carville, Louisiana. His letters inspired me not only to read but also to study the collection. That study of Carville’s history and my family story impelled me to write this book during the last two years.
Why do you think there was so much secrecy about your grandfather?

We always understood that my grandmother was deathly afraid of Hansen’s disease and that she never spoke about her husband. There is certainly cause for that. In 1924 when my grandfather first entered Carville, the condition was feared and stigmatizing. My grandmother must also have known that speaking about her husband would have affected the way she and her children were viewed and treated in the community. Later, perhaps the habit of secrecy had become ingrained in her. As the years went by it became obvious that my grandfather’s illness was a public secret; people knew about it but also knew not to talk about it.

Edmond and Claire married in 1917
When I began to research the letters I learned that there was tension between my grandmother and grandfather during his years at Carville. Perhaps this too added to my grandmother’s silence; whatever her reasons were, we all knew not to ask questions.  Even in her eighties, my mother acknowledged that she would not have spoken about her father if her mother were still alive. 

Happily, writing about my family has lifted the shadow of leprosy that enveloped all of us for so many years.

What were you hoping to discover when you began searching for your grandfather?

As a young child, my fantasy was that a picture of my grandfather or a note from him would mysteriously fall out of a book or appear in a dresser drawer. I smile now at my innocence, for my grandfather had never lived in the house I so carefully scavenged.  By the time I reached adulthood, my search was as unimaginative as my childhood search had seemed magical.  

I sat down to read the letters with no expectations at all. Happily, I was captivated by the words my grandfather had written in his own hand.  I knew then that I wanted to do more than simply read those letters.  I was discovering my grandfather in ways I had not imagined possible and I wanted to honor the life of this man I had finally discovered.

Did anything surprise you when you read the letters?

I was happily surprised by the collection as a whole because it gave me an insight into my grandfather at three important stages of his life.  I met him as a young man away from home for the first time as a student, as a married man in the Army, and as a man incarcerated voluntarily at Carville as a patient. In the early letters I discovered a young man of ambition and compassion who had hopes for a full life.  In Carville this same compassion and ambition were stymied, but also
In this 1917 picture Terville and Lucy Landy sit
surrounded by their five children. Unknown to the
family, all five children had probably already
contracted the leprosy bacillus
redirected as he set about finding meaning in a life he had not chosen.

I also discovered that I can no longer idealize my grandfather. He was a man with his own demons and fierce demands on himself and others, but he channeled those demands in a way that gave him agency for his own life and enabled him to advocate for his fellow Carville residents.

Perhaps, though, the biggest surprise was the freedom I felt with the completion of this book.  I had intended to speak about my grandfather and bring him “out of the shadow,” but I too have come out of the shadow of my family’s silence.

Your book is about your grandfather’s life in a different day and time when fear about leprosy and a misunderstanding of its cause and contagion were rampant.  What is the current understanding of leprosy?

Medically we now know that Hansen’s disease or leprosy is only minimally contagious.  Ninety five percent of the population has a natural immunity to the disease, and even the five percent susceptible to HD seem to be at risk only if there has been a prolonged contact with the bacillus.  When my grandfather was diagnosed there was no understanding of leprosy’s transmission and there was no known treatment or cure, but now with a multi-drug therapy a diagnosed HD patient can be cured and is not contagious after just a few treatments.

Even so, in today’s culture there are still misconceptions and fears about HD.  People associate it with the leprosy described in the Book of Leviticus, but these are not the same. Many may also recall portrayals of the disease in literature and movies where victims are pictured as badly scarred and/or ostracized by the community. People are not aware that the disease is only slightly contagious to begin with and is curable. I would hope that this book and other activist literature and organizations can dispel misunderstandings that still exist.  IDEA for instance is an international organization that exists to achieve dignity for people with HD and provide education for the rest of society.


Coleen Perilloux Landry said…
I am very excited to read this book. I have a small photo/journal of Carville in my personal web site at http://www.pbase.com/septembermorn. When I visited Carville it was a very emotional trip. My parents were born in the late 1899's (1892 and 1894) and leprosy was a very feared disease. My mother would not eat in a Chinese restaurant because she feared the Chinese had leprosy. So many fears, heartache and wasted lives. Thank goodness medical research has changed that.