A STORY OF LIFE AND STRUGGLE!

Name: Feliza Alí RamosAge: 38 years

Feliza is in a wheel chair and narrates the cause of her situation.

Can you tell us how you became to be in a wheelchair? Yes, I was in a car accident 10 years ago, I was traveling from Potosí to Uyuni by bus and the driver fell asleep, he passed directly instead of going around a curve and we fell 70 mts deep, I fractured my vertebral column at level D12-L1, from that moment on I can’t walk. The bus was almost empty; there were only 12 people on it, including the chofer and his helper. Of the 12 people, 5 died, 5 survived and have no major injuries, 1 has a major muscular problem now, and I won’t walk again. The accident was caused by the driver being so tired, he had traveled the same day from Tarija to Potosí, this happened on Tuesday September 23, 1997. At the moment of the accident who helped you and how were you treated?

It was very hard! There are moments I remember and moments I don’t, there were moments where I was unconscious. I fell directly on my stomach, and when I realized I just had an accident, everyone was leaving the bus!, they were screaming!! They were crying!! They were asking for help! I was also screaming for help, I wanted to turn over, I was hot, a man wanted to help me and turn me over but a tourist was telling him not to because my back was hurt. They didn’t turn me over but they did try to keep me out of the sun because I was sweating and I was very thirsty, so they wet my lips with a little water, I kept passing out and then come back to consciousness. I felt my legs wouldn’t respond. I passed out again and when I woke up and they were putting me on a board made from the ladder of the bus. The bus was completely destroyed; top was completely ripped off! The only thing left were the seats! I can remember that 8 people were carrying me up a rocky hill. After that, I remember they were putting me in a pick up truck and nobody wanted to come with me to the hospital, until another tourist said he would come. The road felt so bumpy that it hurt me, I screamed of pain!! The truck driver stopped a passing bus and they drove me to the Bracamonte Hospital in Potosi, the pain was less because I didn’t move as much as the pick up truck. The bus driver knew my dad, so he called him as soon as we got to the hospital. I remember when we got to the hospital I was waiting and waiting to be attended in by a doctor and no one would come!! There were other patients who would not get any attention either. I would scream for help, and nobody would help me! Then I remember that I was getting X-rays of my knee, which was bleeding, and they had turned me over but they wanted to put me on my side but the pain made me scream! I just started screaming and I didn’t let them turn me over. A doctor told me (after two years) that if they hadn’t of moved me so much and instead had stabilized my neck in that moment, I could have recovered. The hospital was very depressing, it made me very angry, and if my family hadn’t been there with me they wouldn’t have given me any pain killers.

After all that my life changed completely, I could no longer walk, I was there 11 days without moving at all. I had be operated on, but they wouldn’t allow it until I had authorization signed by my parents because I was single. My parents got to the Hospital 48 hrs later because there was no transportation from Uyuni to Potosí any sooner. My 30 year old sister got there 24 hours before but they wouldn’t let her sign the authorization form. If I would have had surgery to decompress my spinal cord within 5 to 7 hrs after the accident, I might have been able to walk again, but my surgery was done after 48 hrs. My spinal cord is not cut, it is compressed by the

vertebrae caused by all the movement of my back in the first couple days. Now I can move my legs a little, I have learned to control my bowels after 4 years of not being able to and of having to use a urinary catheter. Maybe I could have recovered more if my spinal cord was liberated before with the operation, but it didn’t so now my life is completely different!

What was your first month after the accident like?

I spent one month and 11 days in Potosí, I had the hope of being able to walk again because the doctors told me I would. After that I came to La Paz to get second opinions. They told me that I was not going to be able to walk again because I had a spinal cord injury and that no surgery was going to help, just physical therapy. I just couldn’t accept it! So I kept on researching and found out that there was a doctor in Cochabamba that specialized in this type of injury. So I went to see Dr. Trigo. During my first appointment he showed me x-rays of my back and told me that with one surgery he could liberate my spinal cord and that my cells would regenerate and I would be able to walk. I was so excited!! We had no money left, but I begged my parents and they finally agreed to help me. Just the doctor’s fees were 4000 US dollars apart from the hospital and medication fees. That doctor did nothing but take the metal bar out of my back. He said that in two months, maximum six, I was going to be able to take my first steps. After the surgery, the doctor came to visit me continuously but as time went by he came less and less often. At the end he didn’t even want to come see me. He played with my hopse and they only thing he accomplished was to make me poorer than I was!! After being in Cochabamba for two months I left to live to Sucre. In Sucre I was doing very badly, I was very depressed; I went to physical therapy at the “Psicopedagógico”, and in exchange of my physical therapy I worked half time for them as a social worker. I had physical therapy, electrotherapy, and hydrotherapy done on me and nothing worked!! I just became poorer and poorer!

I wanted to die for four years; I tried to commit suicide various times, I suffered way too much, I was desperate because it was very hard for me to accept my situation! I had a boyfriend for 7 years, we were supposed to get married, we’d talked about it before the accident. His attitude started to change and mine as well, I didn’t want him to be in the same room where I was, so I would ask him to leave, I couldn’t accept that I couldn’t walk. It was very hard on him too; he really wanted me to be able to walk again. And that frustrated me even more! Terrible things started to happen, I felt everyone treated me differently now that I had a wheelchair. In my work for example, everybody got a raise except me, because they said I was getting free physical therapy. On the other hand my family had no money, not even for basic food. My nieces would save up to 50 cents to be able to buy bread, and that caused me a lot of pain and made me realize from that moment on that I had to stop pitying myself, I had to stop taking painkillers, and spending all the money on physical therapy!! I promised myself I would start working to help my parents and siblings.

When I started to look for jobs, I met with my classmates and they told me that I could work with them, that they could do the house visits and I could type everything up in the computer. That hurt a lot because I hadn’t studied to just type on computer, I wasn’t a secretary. They were just thinking of my wheelchair and not all the education I had. I know they didn’t do it to be mean, but usually that’s the way the society thinks about people in wheelchairs. I felt sad that I decided to create my own job and help others like me, so I started to bring together people like me and organize them. Sometimes the pain in my legs was so intense that it kept me in bed, and of course all the work I had was delayed. That psychologically strengthened me, it was an internal

fight, I couldn’t let the pain get me down and not make me work. It was a very hard fight!!

When we were finally more organized, we created the “New Hope” Association. We has small projects like a “Piñateria” in which we sold “piñatas” from home, we didn’t do so well because we didn’t know how to run a business. After that we had a shoe making business, we did badly on that too. At the same time as we were trying to succeed, we learned about the existence of the law 1678, so I started researching it. I looked for the organization, CODEPEDIS (Departmental Committee for People with Disabilities)., which was in charge of seeing that this law was being implemented. We organized the Federation of People with Disabilities and I became president of it. Later CODEPEDIS Chuquisaca hired me as their Director. Many things were going on in that time, there was a lot of discrimination, and the government authorities wouldn’t even listen to us. One time a women spat on my face in the street and I screamed at her “I hope this never happens to you”.

What gave you the strength to keep on living and at what moment of your life did you decide to do so?

It happened slowly. First I stopped taking my pain medication, and I focused on supporting my family and on working. One day I realized my parents were so poor, it killed me!! They never said anything about it they just keep supporting me, so there had to be a moment where I started to pull my weight right? So I did. When I stopped taking the pain killers and had my 5 sense back, I started an investigation on disability policies in order to finish my bachelor’s degree in Social Work. I learned a lot about disability policies and laws in Bolivia. At the same time I did a lot of research on spinal injuries, there I realized that medullar cells don’t regenerate and that I was not going to be able to walk again!! It was very cruel to have learned that, but I finally had to accept it.

What were the results of your efforts?

We started a CODEPEDIS office in Chuquisaca and I would like to tell you about it: When they were giving us the office they wanted to have all the media for propaganda purposes to show the whole country that the governement helps people with disabilities. So in front of everyone, I try to go in to the desk to sit down so they could take pictures and I didn’t fit with my wheelchair. So they had to move the desk and as soon as they lifted the desk it broke, the legs has been broken before, it was so funny that all the press was filming this incident. They had given us a broken desk!! This was how they treated us for having a disability.

After 10 months CODEPEDIS hired me as the director in Chuquisaca. It helped me so much to have already been a professional. After a year and 8 months of work in CODEPEDIS Chuquisaca, when the institution was still growing, I was chosen to be the representative for people with disability for the National congress, and shortly after I was chosen to be a board member of CONALPEDIS (National Committee for People with Disabilities).

In a CONALPEDIS board meeting I was chosen to be National Executive Director, I worked there for 2 years and eight months. I contributed a lot to CONALPEDIS, they hired 4 more people, a first national plan for equality was created, we initiated a national program to register disabled people and a started an investigation of the situation of disabled people nationwide. All these activities would not have been possible without the help of different entities like the public defender office, JICA, the British International Service, and World Bank amongst others.

Feliza working in International Service Bolivia

How independent do you feel in your daily life?

I am a completely independent person, I can take perfect care of myself, but the fact that there is no infrastructure in La Paz for disabled people makes it impossible for me to move around by myself, I’m therefore always depending on someone for help to get from one place to another. La Paz’s streets are not flat; there are many hills, so I take cabs everywhere. I pay double the fare almost always, but I guess I’m used to it now. I spoke with my parents several times and they told me that they never thought I was never going to work, they thought that my siblings were going to have to take care of me forever, but now they see me as just another member of the family, with my own responsibilities and they expect the same from me as from anyone else. Who lives with you?

First off, I support the whole household and I live with two brothers and my nephew. We come from a large family, I have 8 siblings, and thank God all of them are professionals with university degrees. I know that all my family is always looking after me, we are very united, and I am committed to helping them.

Since you have been in a wheelchair do you feel that you have had same opportunities as other people?

Definitely not the same! It makes me mad, sometimes you get a lot of attention and sometimes nothing, so it’s definitely not the same. I really notice it because I lived 27 years walking normally and I have always fought for what I believed, but now I feel I need to fight double. I want to live like everybody else, but it’s hard not to get noticed in a wheelchair. In various occasions I have felt discrimination, you don’t get many opportunities, people just assume that you can’t do things when they see the chair.

What would you say to a child with a disability?

I would tell him to have lots of strength and courage!! He’s going to suffer more than other children, but it really depends on how he is raised at home, if he is overprotected by his parents, he will suffer more when he goes out of the house, but if he is treated like a normal kid, he will have a better life.

I would tell him that life is not impossible, that we can make it!! We have to participate in everything we can, go out in the streets, go to regular school; we have rights because we too are Bolivians and humans!!

What goals to you have for you professional and personal future?

I would like to create my own business or an NGO, something that will allow me to continue helping people with disabilities in my country. In my future personally I would like to have a child, not necessarily to marry someone but I would love to have a child and continue the struggle for a better life!!

Is there anything else you would like to tell us?

Yes, there is also a lot of discrimination that disabled woman face. One example in my life is once there was a contest in Ecuador for people with disabilities and CONALPEDIS when they informed us about the contest said that they were looking for men who had disabilities and a bachelor’s degree. I couldn’t believe they were asking for a male, when I had a disability and a bachelor’s degree. We were so mad that with my friends we decided to find out more about the contest, and we finally discovered that it was here in Bolivia that they said that only men could apply, we could not believe it. We made everyone aware of what had happened, and then women were finally able to enroll in the contest.

When I was the National Executive Director of CONALPEDIS, I really fought hard to demonstrate to the other 7 male directors that I was as good as they were. They thought I couldn’t do such a good job because I was a woman. It is true when they say that women with disabilities face double discrimination. Now I do everything in my power to fight for my rights as a woman and as a person with a disability.

One more thing, the access we have to services is very limited and not very good quality, they just don’t know how to treat us. Once I had to have x-rays taken in Sucre, and the doctors wanted me to stand up, I told them I couldn’t, and they insisted that I stand up. They lifted me up by my arms and then wanted me to straighten my legs, and I couldn’t believe that as doctors they didn’t understand and know that that was impossible!! I cried the whole day, I couldn’t believe it.

Interview by: IS -Bolivia