Introduction

The Oral History Project

Recovering Voices From
the Distant Past

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Stigma, Identity and Human Rights
Conference on Robben Island

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Books Written by People Who
Have Had Leprosy

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(Left to right) Yang Xiao Yuan, Hu Shou Ming, Huang Bao Huang, and Guo Zhao Han participate in the China-Japan Friendship Tour trip down the Li River in Guilin.
Photo by Pamela Parlapiano

I am from the leprosy village in Anqui City, Shandong Province.  Today, I am honored to attend the ceremony of the Fifth International Day of Dignity and Respect.  This activity strongly encourages me to overcome my sense of inferiority which I have had since I was diagnosed with leprosy 30 years ago.  This activity not only gives me the encouragement to get rid of my sense of inferiority but also the resolve to assist my fellows who have faced the challenges of leprosy.

I was 22 when I got the disease.  I was diagnosed in 1969 and cured in 1979.  I was a soldier.  I was sent from an army group to a local leprosy hospital.  I found a very bad situation there.  I didn’t want to stay there and didn’t want to live at that time.  I felt like I was a bird just beginning to fly and my wings were broken by someone.  I was supposed to have a bright future but because of the disease, I felt a lot of mental pressure.

When I was in the Army, I was in a very important position.  After I got the disease, I was sent to the leprosy village and appointed to be the leader of the village.  At that time we weren’t allowed to get married and men and women were separated.  I was the leader so I had to be very strict with others and with myself.  I’ve been a caregiver in the hospital for more than 30 years.  I became responsible for management and medical treatment in the village. 

We began to manage our own lives when the government of Shandong Province announced that leprosy had been “eliminated” in Shandong Province.  After that, there was no “patient” in the village.  Of those cured of the disease, some have gone back to their homes.  Those who remained are people who are homeless, old, weak, or have disabilities.  In the meantime, the Dermatology Institute, including all the doctors and nurses, left the village and took the medicine and medical facilities along with them.

In other words, the leprosy village fell into a very difficult situation.  We became a forgotten corner where no one cares about us.  Fortunately, people recovered from this darkness after a period of confusion and hesitation.  We got together to walk on our own way.  We developed our own strength, self-respect and self-confidence and became self-supporting. We work together like a big family.  Thirty-five percent of the income we get from production goes to the village, while 65% goes to the individuals.  After several years’ effort, our living standard has been improved.  However, the heavy burden of physical work added great pressure to the villagers who already had disabilities.  Fortunately, that has been changed since we bought some agricultural facilities.  In the meantime, our productivity rate has been increased.  It is not enough to depend on farming.  In recent years, we have set up centers for raising pigs and sheep.  To our delight, our economy has been greatly improved after working hard for over ten years.  There are 18 villagers who have the ability to do physical work.  They voluntarily take good care of the 23 people who have serious disabilities.  This is the recipe why everyone enjoys this big family. 

To enrich the villagers’ spiritual lives, we set up a club where we have television, stereos, chess, etc.  People living around the village who have not had leprosy often come to play and sing songs with the villagers.  As a result, we have built a good relationship with each other.

Nevertheless, we can’t ignore that there are still about 150 people who are seriously disabled living in severe conditions in Anqui City.  I have a dream that the government will get all the people who are elderly and disabled together and support their living expenses, which will enable them to live out the rest of their lives happily.

-- Excerpts from Speech Presented by Mr. Hu Shou Ming on the Fifth International Day of Dignity and Respect, March 11, 2003, Guangzhou, P.R. China and an Interview Conducted by Anwei S. Law in 2003.   Translation by Dr. Michael Chen and HANDA/IDEA China.   Copyright 2003 Hu Shou Ming and HANDA.

[Note:  In 1998, Mr. Hu Shou Ming was chosen by Congress Organizers to speak at the Opening Ceremony of the XV International Leprosy Congress, which was held in Beijing.  This was the first time in the 100-year history of the ILA Congress that any individual affected by leprosy was invited to share their experiences during the Opening Ceremony.

When he traveled to Guilin with the China-Japan Friendship Tour, Mr. Hu flew on an airplane for the first time.  He commented:  “I’m the only person in my village with an I.D. card.  Many villagers have never even seen a train, not to mention an airplane.  It’s my first time to fly through the sky.  The white clouds are like a field of snow under my feet.  It goes a thousand miles a day.  Who says only the ghosts can fly?”  He also composed a song to commemorate the Friendship Tour.]