The Lonely Journey of a Nine-Year-Old Girl

Boarding Refused

I was born on May 24, 1960, the biological daughter of Raimundo Maciel dos Santos and Jucelina dos Santos, in the district of Arauiri, in the city of Tefé, state of Amazonas. Fifteen days after born, my biological mother died of tuberculosis. Then I was given by my father to the couple who had baptized me: my godparents, Mr. João Rodrigues das Chagas and Mrs. Maria Meide das Chagas. According to my adoptive parents I was a very sick child, impaired by the lack of breastfeeding, which seriously affected my nutritional condition. When I was adopted, my foster mother was 6 months pregnant of her first child. And due to this situation that generated an accumulation of responsibilities for this family, I counted with the care of an uncle (my dad’s brother). This uncle was bearer of Hansen’s disease, undiagnosed, untreated, and without segregation. And it was him who took care of me all the time. When I was 8 years old, the early signs of Hansen’s disease began to appear in my body: spots, swelling in the hands, feet, ears, and pains in the entire body.

We lived in Arauiri, in the city of Tefé, state of Amazonas. It was common at that time, in the countryside of Brazil, in riverine communities, the passing of boats with healers. My parents always searched them seeking the cure for that disease that nobody knew. They prepared beverages (beverages with several medicinal herbs), and they even took me to séances, where they also prescribed those beverages. However the disease would not give in and just got worse. I spent one year doing this kind of treatment and only eating sardine (regional fish), because it was considered non “remoso” (a quality of fatty foods considered dangerous).

My mother was a teacher of the only school in the community. When the other kids noticed my health state, with fear, they began to get away from me. Then the parents took all the students from the school because of my condition. My mother was out of work.

One day my parents decided to take me to Tefé, for a medical appointment. We left at dawn, it was a four hours trip of rowing boat (we didn’t have any motor boat). Even the doctors could not diagnose me. On the fourth trip, in 1969, they reached a diagnosis: Hansen’s disease. With this also came the recommendation that I should be inpatient of Antonio Aleixo Colony, in Manaus, capital of the state of Amazonas, where there was a hospital specific for the disease internment and treatment. In fact, still with 9 years, I could not understand almost anything of what was going on.

With the needed trip, my parents tried to prepare what I should take. I had never used a shoe. They bought me a sandal and, for the first time, I tried with difficulty to use a shoe, because my feet were very painful. Even though I felt the greatest joy to have and wear a sandal. That same day, an aunt of my mother who lived with nuns got some clothes for me, because the ones I had were too old (they were made of sugar bag). All this so I could travel to Manaus.

My father went to the boat to present my ticket and, unfortunately he was aware of sad news: I could not travel inside the boat with other passengers because of the disease! With the pressure of the nuns and the doctor regarding the urgent need of my trip, the boat owner accepted the proposal to drive me in a canoe, tied to the boat, in tow. My father, very down and sad, got our own canoe and wove a “panacarica” with cauaçu leaves. The “panacarica” is a kind of roof. With the stalks of arumã my father made the panacarica frame, a shelter with coverage, to protect me from the rain and sun during the trip.

After everything was ready, my parents came to talk to me. It was a very sad moment, we cried a lot. They advised me not to get out of that corner, only 15 minutes before the boat departure. My mother took me to the canoe and arranged my things. She said that I would have to be sitting or lying down, remembering that I should take the water from the canoe often, for not wetting where I was sleeping. Then it was the departure time, my mother hugged me, blessed and said “Go with God”. Then my father came to arrange the back of the canoe. I began to feel a great pain in my chest and a great desire to cry when I saw that huge boat of three floors. I watched my father getting on the boat to talk to the owner and, then together, going to the back of the boat to check the distance from my canoe to the boat. Then my dad returned bringing me some foods, because that day there would be no dinner.

Exactly at 6 pm of November 28, 1969 I left on boat, followed at a distance by the canoe that took me, leaving in the “edge” my parents completely upset by the departure pain and the conditions under which I, a little girl alone, would hospitalize myself in a Colony.

Until the boat was distant and until nightfall I was in tears, unable to control myself. I fell asleep by the fatigue and crying. The next day, the people in charge of the boat threw two cans, tied to the ropes: one with coffee and another with cookies to feed me. But I couldn’t eat because of such sadness, fear, perplexity, and the longing of my younger brothers, that I cared. I also missed my parents, and I felt the uncertainty of what awaited me, of what was going to happen to me. I noticed that several people came at the boat stern to look at me. It was a two-night and two-day travel, and I wasn‘t even ten years old. I was only able to urinate; I had no way of doing anything else.

The hospitalization was also a very painful process because I didn’t know; I didn’t understand the reason for that isolation, that distance from the family. I cried a lot because I felt a deep sadness, and without mentioning the various problems that I had to face in the Colony.

In 1976, already 16 years old, I was discharged and I returned to my parents’ house. But I returned one year later to the Colony due to the difficulty to get adapted, because everyone saw me as “that sick girl that returned”. This attitude stigmatized me, causing great distress and embarrassment. The pain caused by prejudice.

Meeting My Partner and MORHAN

In 1978, the Colony, as an isolation was discontinued, due to the Ministerial Order 165 from the Presidency of Republic, Ministry of Health.

In 1981 I was hired by the Health Department of the State of Amazonas as a Nursing Assistant, starting to perform the function of midwife, in deviation, due to the experience I acquired in the Hospital/Colony and due to the area needs.

That same year I assumed a commitment with the companion Edigilson Barroncas, with whom I live until today. And, jointly with other struggle partners, already in 1982, we began to act in the social movement and, in 1983, we were able to establish the MORHAN/AM.

On March 8, 1984, the International Women’s Day, I represented the Women Affected by Hansen’s disease, at the Town Hall of São Bernardo do Campo/SP.

Also in 1984, I participated in the 3rd National Meeting of MORHAN, in Brasília.

In 1985, I had a great disappointment and anger, because I was affected by a relapse that caused me a reaction in the muscles, showing “claws” in my feet and hands. This condition professionally affected me, preventing me from doing what I liked the most: childbirths. This caused me great sadness, because since I was a child I dreamt with a healthcare profession, because I liked the white clothes. I was always dressed in white. I lost my profession with 26 years, being forced to take a leave to do the treatment and rehabilitation. My outrage was such that I fought with “God and the World”. With that my story comes to the attention of the State Health Department and, through the Government Ordinance, all servers bearers of Hansen’s disease could require retirement due to disability, and I was benefited with that, being one of the first people afflicted by Hansen’s disease to be entitled to retirement due to disability.

In 1994, my companion Edigilson and I adopted our only and beloved son Walter Cruz Barroncas, which today helps us in this struggle, being the reason of our pride and joy.

In 1999, I was elected the 1st Deputy of the State Health Council/AM. In 2005 I was elected member of MORHAN National Executive Board. In June 15, 2006 I was elected Counsellor by MORHAN, having a representation in the National Council for the Rights of People with Disabilities – CONADE. Still in 2006 I was assigned to represent CONADE in the GTI/Hansen’s disease (Interministerial Working Group of the Presidency of the Republic). During four years, two mandates, I was Coordinator of MORHAN/Manaus.

Today, 55 years old, I’m still in the struggle, being a Counselor at CONEDE (State Council of the Rights of People with Disabilities), and also as a Counselor of CMDPD (Municipal Council for the rights of People with Disabilities). And the most important of my life is to be engaged in movements and struggles for the rescue and guarantee of the space that both people afflicted by Hansen’s disease, and people with Physical Disabilities are entitled to. Exercising citizenship in equality and freedom, with rights and duties, as any other citizen, without any kind of discrimination or prejudice. All these victories and achievements, as a result of my path against prejudice and discrimination, were reached through this engagement that MORHAN provided me in training, knowledge and exercising citizenship with dignity.

NOTE: Artur and Carly, feel free to make any changes. I trust you.