THE LONG READ: BEING A WOMAN AND A MOTHER WITH DEAFBLINDNESS

Camila Indalecio, Brazil

INTRODUCTION

The history of women is marked by struggle and challenges, as we fight for equality and for opportunities within society. Women are often excluded and discriminated against simply because of our gender, and we often have to fight to overcome assumptions and guarantee gender equality. Even today, women across the world face many obstacles to equality, including racial discrimination, violence, poverty and – for those women with disabilities – additional discrimination because we are different. The history of women, however, is defined by the history of women without disabilities. Women with disabilities are, therefore, a minority within a minority. Our stories of struggle and overcoming barriers are either forgotten or unrecognised.

Women with deafblindness also suffer specific discrimination within the disability movement. People with other disabilities perceive us as being incapable of participating in public policymaking, having a family, or gaining employment. Because of the different ways in which we communicate, we are rarely given any opportunities, and few people with deafblindness are able to fight for recognition or the right to equity.

We, women with deafblindness, face many obstacles simply because we are women. We are submitted and exposed to various difficulties and challenges. Domestic and sexual violence are often hidden, even by the family. Many women with deafblindness suffer silently, day after day, without anyone to defend or protect them. Many women do not have access to information about healthcare or education. To these women, the universe is a silent, dark world.

However, a number of women with deafblindness do lead productive lives within society. They fight both as women and as mothers, actively advocating for public policies to guarantee their rights, as well as ensuring family protection. This struggle to achieve recognition in society is experienced by each and every person with deafblindness.

BEING A WOMAN WITH DEAFBLINDNESS

I am a woman with acquired deafblindness and Usher syndrome. I found out that I was becoming deafblind when I was 13 years old. When I was 11 I started to lose my hearing and, when I was 23, I lost my sight. Knowing that I would become deafblind when I was 13 did not affect me that much. I was a teenager who was worried about enjoying life to the fullest. My mother, whom I greatly admire, never hid the fact that I would lose both my sight and my hearing. My older sister was already living with deafblindness.

During my time at school, however, I was ashamed to accept my deafness, to use hearing aids, and feared that my peers would not accept me. To interact and follow the classes, I learned to lipread. In the second year of high school, I faced the first situation of discrimination in the classroom. The teacher read a text aloud for us to write down. I couldn’t lipread what she said because her head was down while walking around the room. I asked her to speak in front of me, so that I could lipread what she was saying. She replied, "It’s none of my business. If you're deaf, it's not my problem. This is not a school for the deaf." The whole room laughed and made jokes about me. I cried and felt full of shame and begged my mother to move me to another school. I finished high school at an inclusive school where many people with physical disabilities were studying. Unfortunately, I was unable to attend college because I could not get a job to pay for my studies. That's when I became my sister's interpreter-guide.

I used to take her to work, to events and leisure activities, and I interpreted newspapers, books, TV and conversations with other family members at home. I began my preparation to live, in the future, as a person with deafblindness. Having seen the routine and barriers faced by my sister in terms of accessibility, I began to imagine what my life as a person with deafblindness would be like. However, wearing their shoes was something totally different.

Interpreter-guides strive to convey as much information as possible to the person with deafblindness, to help him or her to interact. Sometimes, however, they may become impatient. This happens a lot with some interpreter-guides, as situations arise where they  get frustrated, or think that certain information doesn’t need to be passed on to the person with deafblindness. To have worked as an interpreter-guide was of great value to me; it prepared me to understand that not everything can be transmitted, even if the interpreter-guide is trying their best best. Today, I realise how much I failed my sister.

When I became deafblind, I thought that I was prepared to accept the difficulties and challenges that came with it, due to my experiences and interactions with my sister, other persons with deafblindness and my work and learning as an interpreter-guide. Despite being part of my sister’s experience, I was not prepared psychologically, particularly as I had a much greater challenge ahead of me: the challenge of being a ‘deafblind mother’. The despair and sense of incapacity took over me and everything I had learned from persons with deafblindness and the professionals vanished from my mind, leaving everything in the dark.

Although my family always supported me, it took me a while to come to terms with it all. It was difficult to accept. I started thinking, ‘What now? How am I going to help my deafblind sister and other persons with deafblindness the way I used to do? How will I raise my child and help him with his school work, his daily activities?’ This was my worst fear and nightmare: how to fully participate in my son's life and whether he would accept me as a mother with deafblindness. Those were just some of the questions I asked myself during this acceptance process. Many mothers with deafblindness face these challenges, but many of them fear sharing the difficulties they are coping with, afraid of showing themselves as weak. As a result, they keep the pain, the frustration and the despair to themselves.

BEING A MOTHER WITH DEAFBLINDNESS

One of the challenges of being a mother with deafblindness is overprotection from your family. Many people believe that a mother with deafblindness is unable to perform or participate in certain tasks with her children, making her feel incapable or guilty about a situation that is, in truth, socially invented. The mother may end up angry with herself for being deafblind, and she may start to believe that she isn’t able to fully participate in the life of her child like other parents. A family’s attitude can greatly affect the bond between mother and child, and the child may relate to and respect the other family members more than the mother herself. After undergoing a process of acceptance, my family helped me to interact with my son, encouraging him to be close to me, making him aware of my disability and trying to ensure we had a life like any other family.

My son was three years old when I became deafblind. I could see very little at that time. There were still many discoveries, such as preparing for him to go to school. I worried a lot. That's when we started adapting games so that I could play soccer with him, I could follow his drawings. How did we do that? While he was drawing, he would tell me what he was doing. We started playing soccer with our hands, sitting on the ground. We used to look for toys that I could feel to play with him. I also wanted to teach my son how to explain different activities to me. For example, while watching children's music videos, he taught me the dance steps and the lyrics of the song.

My other sister, Andreia, who later became both my sister and my interpreter-guide, helped me to come up with ideas and taught my son to guide me, or to let me know when he needed something. This phase was a bit easier. The difficulties came later: school and the times when he got ill.

To enrol my son in school, I had to go with my mother. The school principals did not allow me to enrol because I was deafblind. They thought I was incapable of making decisions about my son. It upset me a lot and my mother felt that she should protect me from situations where I might feel embarrassed or angry. I have always had a strong temperament, and have always confronted my mother when she tries to protect me from situations involving my son.

At pre-school, my child had learning difficulties, and struggled to focus on activities. The teacher and the principal called in my mother to discuss my son. I went along, even though my mother told me not to. The teacher said that my son had not developed because I was deafblind. That, to me, was a huge shock. A slap in the face. I was furious. I pointed my finger at the teacher's face and said, “My son doesn’t have problems with his activities just because I'm deafblind. Children of parents without disabilities go through the same situation and I will prove to you that it is not because of my disability, and that I am fully capable of helping my child to thrive at school!”

My mother was initially ashamed, but eventually she realised that I was right to speak up. Because I was taking part in rehabilitation at Grupo Brasil and at the ABRASC, I was able to seek guidance from teachers who work with children with deafblindness. One teacher, Dalva, helped me a lot, and taught me how to use modeling clay so that my son could improve his hand-eye coordination.

Writing was more intuitive. As I have a tattoo, my son liked to pretend that he was tattooing my foot. He then began to draw on my feet and legs, where I have more sensitivity. This gave me an idea and I began to help him write in this way: he drew and wrote, and I corrected. Using this method, he started to develop in his school activities.

Other difficult situations at school included the presentations and parties. My son's first performance is the last image I have of him. It was a dance performance. I've never felt so much pain when looking forward to seeing something in all my life. The desire to watch my son dance was immense. Although my family was interpreting everything – the clothing, the lyrics of the song, how he was dancing – I could only see the flashes of the cameras. I cried so much and I had to try to calm myself down. When the dance ended, the teacher encouraged the children to meet their parents. Arthur, my son, saw me crying and asked why. I lied. I said that I was thrilled to see him dance. I was surprised by his response. Despite being only three years old, he said, “Mom, I know you do not see anymore, but look, I danced very well. I fell, but I stood up quickly!” At this point, I realised that he was becoming aware of my deafblindness. It was clear that the education my family and I had provided him was starting to show results. He understood me and he was close to me.

At another school, my son was bullied for being overweight and for being the son of a woman with disabilities. Once again, the teachers and principals tried to keep me away. They did not want me to participate in his activities and I was again told that he was not developing because I was deafblind. This time, however, I was prepared.

People aren’t used to seeing a person with deafblindness playing an active role in their children's lives. This role is usually assumed by another family member. There are still few people who understand the different forms of communication, such as the use of tadoma. When I took my son to school with my sister, and she talked to me, other mothers and fathers would look at me, frightened, suspicious, thinking that I was a lesbian. They started separating their children from mine. My son’s classmates made sick jokes and isolated him, because of their parents.

Again, I faced up to the school principals, the teachers, and even the other parents. My mother wanted to protect me from what was happening to my son at school, and tried to solve the issues herself. But I confronted her, explaining that I had the right to know what was going on, whether good or bad.

One day, a group of mothers were whispering about me, and about the fact that I was touching my sister's face. She passed me this information and so I asked her to take me to the group. I explained how I communicate and ended up saying that, if I were a lesbian, they should respect me. In doing so, I gained respect, and they started to see me in a different way. To those who called me a ‘pity person’ or who said I was sick, I replied that I have no illness, that I am a person with a disability. When you take away the ‘Dis’ the word that remains is ‘ability’.

The role played by the family of a mother with deafblindness is very important. However, the mother herself has to have the courage and desire to face the challenges, and to prevent her family from becoming overprotective. If the family does not support the mother with deafblindness to interact with her own child, enabling them to feel close to each other, how can that bond be strengthened? And what will happen in the future?

Sometimes my son rides his bicycle on the street. I sit while other parents accompany their children. My mind is not quiet and every car noise or child's scream terrifies me. I can still communicate and ask for help from someone, though. What about the mothers with deafblindness who can only communicate with tactile Libras or other forms of communication that nobody knows? When I have the opportunity to meet other mothers with deafblindness, I try to share my experiences, teaching them how to participate in their children's school activities.

Family support is critical, as is participation in the development of policies, which will ultimately help to break down the barriers. However, reconciling the fact that I am a woman with deafblindness, a mother and a militant, is difficult. A lot of my time is spent on mobility and communicating. I also need time for translation and interpretation, and require the support of professionals, such as interpreter-guides. As a result, in Brazil today, few women with deafblindness have the opportunity to play an active role in the development of public policies.

I would like to finish by saying how grateful I am to my mother. Although she sometimes tries to protect me from difficult situations – and this is motherly, I know how it is – she has always given me the support I need. She gives me strength to not give up fighting and has never made me feel incapable. She has always encouraged my sister and I to prove that we are capable. My whole family, my brothers, nephews, nieces and brothers-in-law, are the same. I am grateful to all of those who give persons with deafblindness their full support and encouragement.

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