Squint: My Journey with Leprosy

Willie Morris Books in Memoir and Biography

by Jose P. Ramirez, James Carville (Foreword)

Lying in a hospital bed, José P. Ramirez, Jr. (b. 1948) almost lost everything because of a misunderstood disease. When the health department doctor gave him the Handbook for Persons with Leprosy, Ramirez learned his fate. Such a diagnosis in 1968 meant exile and hospitalization in the only leprosarium in the continental United States--Carville, Louisiana, 750 miles from his home in Laredo, Texas. In My Journey with Leprosy , Ramirez recalls being taken from his family in a hearse and thrown into a world filled with fear. He and his loved ones struggled against the stigma associated with the term "leper" and against beliefs that the disease was a punishment from God, that his illness was highly communicable, and that persons with Hansen's disease had to be banished from their communities. His disease not only meant separation from the girlfriend who would later become his wife, but also a derailment of all life's goals. In his struggle Ramirez overcame barriers both real and imagined and eventually became an international advocate on behalf of persons with disabilities. In Squint , titled for the sliver of a window through which persons with leprosy in medieval times were allowed to view Mass but not participate, Ramirez tells a story of love and perseverance over incredible odds. José P. Ramirez, Jr., is a social worker in Houston, Texas. He has written articles about Hansen's disease for the Houston Chronicle , the Star Magazine , the National Association of Social Workers Newsletter , and other publications.

Genres: Nonfiction

240 pages, Hardcover

First published February 1, 2009

Reviews

[Dolores · Rating 4 out of 5]

Many years ago, when I was young, I was deathly afraid of four diseases....infantile paralysis, hydrophobia, lockjaw, and the scariest one, leprosy. I didn't actually know much about it except that there were terrible sores and my nose might fall off.

At the age of twenty, Jose Ramirez was diagnosed with Hansen's Disease and sent from his home in Laredo, Texas, to the only leprosarium in the continental United States at Carville, Louisiana, where he was treated for almost ten years.

His book not only answers all your questions about a dreaded disease, but it is a heartwarming memoir of a loving and supportive family, a close-knit Mexican-American community, and the love that held him and Magdalena together until they were finally married. He overcame all obstacles to become an advocate on behalf of persons with disabilities.

I felt very close to the wonderful people I read about, and I learned a lot from this inspiring book.

[Alice · Rating 3 out of 5]

Fascinating era of US history, but this book doesn't quite stick the landing. Some parts are very interesting, other parts - there was a lot of minutiae about Ramirez' family life - just didn't hold my attention.

[Danielle · Rating 2 out of 5]

This book was sort of interesting, sort of informative, and sort of frustrating all at the same time. I had two big issues with the book. First, I don't think it was written very well. The narrative is rather dry even when the author is describing very emotional things. It was a lot of this happened, then this happened kind of writing. That may partially be as a result of English not being the author's first language (or at least I assume it isn't based on the story). My second criticism can only partially be blamed on the book. Like most Americans my knowledge of leprosy is pretty much limited to stuff from the Bible and the movie Ben Hur. Obviously not the most factual, or up-to-date information. The author continuously points out how wrong people are about leprosy and how hurtful it is to be stigmatized and called a leper, but I never really felt like he gave much information to combat it in the book. There is a FAQ section about leprosy at the back of the book, but it was kind of annoying to have to wait to get to that section to have some of my questions answered. Although some of them still remain unanswered because they just are. For instance no one really knows for sure how people catch leprosy.

I learned a lot about the effects of the disease reading the book, but despite the author's best efforts he did not eradicate my fears about leprosy (not that I really think about leprosy all that much), but if I ran into someone who had it I would be afraid. He says that only 3% of people are even capable of catching the bacillus responsible, but if you don't know if you are one of that 3% it's kind of scary because trust me after reading about what he went through I would never want to take the chance.

[Cheryl Gatling]

In the 1960s, Jose Ramirez, a Mexican-American teenager in Laredo, Texas, began noticing sores on his body. This was followed by excruciating pains in his extremities. His local doctor, and a round of village healers brought no relief, and no answers, so Jose determined to tough it out. He did this until he was unable to rise from his bed.

When he finally got the diagnosis of leprosy, his whole family cried, and asked themselves what sin God was punishing them for. Jose was sent (in the back of a hearse, since no ambulance was available) to the Carville leprosy hospital in Louisiana. There he was treated, and eventually was able to go to college, marry his high school sweetheart, and have two children.

He became an advocate for people with leprosy, now called Hansen's Disease, and got to travel all over the world. If you take away one thing from this book it will be that calling the disease "leprosy" is acceptable, but that labeling a person with Hansen's Disease a "leper" is demeaning, and should never be done. Ramirez calls it the dreaded "l" word.

This book is not especially well written. Despite the often-dramatic events, there is a flatness to the narration. But the fascination of the subject matter mostly makes up for it. Information about the history of Hansen's Disease, and about its transmission (still a mystery, but it is not highly contagious) are sprinkled throughout the story, and included at the back in a Frequently Asked Questions section. I would have liked even more of that, but reading the experiences of this one likeable, determined guy are an inspiration to look up more information online.

[Paul · Rating 4 out of 5]

Jose Ramirez, Jr. has courageously described in painful detail exactly what it is like to live with a diagnosis of Hansen's Disease (aka leprosy). He was blessed with a strong family and a wonderfully supportive girlfriend/fiancee/wife. His transformation into an HD advocate was a long and difficult road, but one I am grateful he chose to tread.

[Showme · Rating 3 out of 5]

Layered.

Although the title refers only to the author's experience with Hansen's Disease, the book gives the reader more - a window into Mexican-American culture of a certain era, more specifically, a Mexican-American culture in Laredo, TX; an as-it-unfolds narrative of a minority culture - and the majority culture around it - as they transition re: gender roles and in diversity awareness, whether that diversity has to do with culture, race or disease; a truly romantic love story between him and his wife; and a story of complicated relationships between parents and children.

While the book isn't an on-the-edge-of-your-seat page-turner, the author tells his stories well. I felt engaged throughout the book. Occasionally, I got lost in the chronology, but I found that the chronology wasn't all that relevant to the story, anyway, so this wasn't an irritant.

Overall, the book gives the reader more than it promises in the title.