Journey of a young girl with disability

“...I don’t define my life with my disability. I try to raise voice for those whose voices often remain unheard."

The International Day of Persons with Disabilities (IDPD) comes with a lot of significance for me. As a person with disability myself, from being denied admission in a regular school to getting rejected for health care, I had to struggle at each step in my life.

In spite of this, I’m trying to make my mark as a young disability rights activist.  It has not been an easy journey for me. I live in a society where stigma and prejudices surround disability; inaccessible infrastructures, discrimination against persons with disability are common phenomenon. But I did not let these barriers come in between me and my dreams. Actually, I don’t define my life with my disability. I try to raise voice for those whose voices often remain unheard.

Let me introduce myself, I’m Afia Kabir Anila, a young girl with Cerebral Palsy(CP) from birth.  I was the Global Children Panel member of Save the Children UK. In 2011, I represented Bangladesh at Global Children Panel meeting of Save the Children UK in London and stressed on rights to education for children with disabilities, accordingly urged them to work on this issue. I have participated in numbers of seminars/conferences at home & abroad and spoke out for inclusion and development in the disability sector. I love to talk about child hygiene, nutrition and importance of health care for children with disabilities in rural areas of Bangladesh. During Disability and Disaster Risk Management Conference back in 2015, I met our Honourable Prime Minister’s daughter, Saima Hossain Wazed. I talked to her about the problems faced by the children with disability. Also, in 2016, I was presented with the golden citizenship identity card from our honourable Prime Minister. Recently, Distressed Children and Infants International (DCI), USA awarded me Youth Leadership Award - 2017 for my contribution to establish rights of children with disabilities and inclusive society.

Afia Kabir Anila (L) participating in a demonstration. Photo: Courtesy

When I was born in 1998, everyone including my parents were very happy. Everything was passing by very well. But at 6-7 months of my age, my parents and relatives noticed that something is wrong. My parents started going from one doctor to another. One doctor told my parents that the name of my disability is Cerebral Palsy and that in future I would not be able to move around or walk. After hearing that, my parents were absolutely heartbroken. That is because they had no knowledge of it. They took me to another doctor for a second opinion and he said that I would not be able to do anything in life and that I am “nothing but an object”. My parents felt hopeless but their indomitable love made them to never give up on me. They took me to a psychologist in Kolkata, India where he said that I should not be admitted to a special school rather I should always go to a regular school.

“... a recreational place like Shilpakala Academy doesn’t have accessible place for people like me to sit in to enjoy cultural activities; one needs to climb stairs to sit."

However, in those days, special children were not easily given admission in regular schools. Thus, my parents admitted me to a special school in Dhaka. Meanwhile, my mother completed her BS Ed with the plan to start a special school and then, she completed her MS Ed and launched a special school of her own. After a year of preparing me from her own school, she decided to put me in a regular school. I first started attending a regular school at the age of 4. At first, none of the regular schools wanted to let me take admission because I was a special child. They claimed that if I was admitted in their school, they would lose other students as they think my disability is contagious. My parents had to almost go from door to door of every regular school. At one time, my father cried in front of a principal of a school and he agreed to interview me and after being satisfied with my interview, he decided to let me take admission in the school and that is where my real journey started. When I first started to go to regular school, everyone used to tease me and I didn’t even have friends in the beginning. It was a very painful experience for me. In fact, some of the teachers used to use such slang language which were almost intolerable for me. Every other day I felt like stopping going to school. In a half yearly examination result I stood third. That is when everyone started paying attention to me. The teachers also started treating me like everyone else and loving me. I even started making some friends. When I was in class V and VI, my classroom was on the first floor and I had to be taken to the second floor on someone else’s shoulders. Everyone made fun of me and teased me but I’m still grateful to the school because if they didn’t let me get admitted there when no other school did, I wouldn’t have come so far in life. My parents and the school authority have a lot of credit behind my success so far.

Photo: Courtesy

I always have a scribe with me because I am not able to write anything on my own and ever since I was a child; my scribe has written everything for me. Among many situations I’ve faced in life, I would like to mention one moment. During one of my half yearly exams, I woke up in the morning to hear that my scribe would be unable to come and that broke my heart. I was very upset but I gave the exam with another new scribe.

Later, I went to a renowned English Medium school to take admission. Although they had a lift would not need to carry me through the stairs, they refused to take me in their school. The school’s respected principal said that I would disturb the children in the classroom and the parents of other students will not accept me. Ever since my childhood, I had the regret that I couldn’t attend regular classes of such a renowned school but, interestingly, I attended the school’s coaching centre and completed my O level exams successfully by taking tuition from the coaching centre of the school. I am now one of their very favourite students even the parents also love me and encourage me. Even my classmates like me a lot and my teachers feel proud that I am their student. This makes me very happy and I am very grateful to both of my parents and my respected teachers who have inspired me to come this far.

Photo: Courtesy

On the other hand, if I want some entertainment or even treatment, I face uncomfortable situations. Everyone gathers around me and starts asking all sorts of annoying questions and these questions bother me. Seeing me on wheelchair, they still ask if I can walk or talk. Only wheelchair-bound people would know how it feels when they face such questions. Everyone, whether, literate or illiterate, people from village or city, all give me a curious look as if I’m an alien. In fact, some of the parents snatch their children away from me. It makes me feel like I am suffering from a contagious disease. As if, touching me or standing beside me would make them like me.

I have to face a lot of difficulties and bumps if I take my wheelchair outside because in Bangladesh, we have cars and motorcycles parked on footpaths and obviously there are hawkers too. Moreover, starting from large malls to many diagnostic centres, they all have ramps for sure but, most of them are inaccessible. Further, many places for entertainments do not have proper entrances. For example, a recreational place like Shilpakala Academy doesn’t have accessible place for people like me to sit in to enjoy cultural activities; one needs to climb stairs to sit. I do not understand why people do not follow the building code that exists.

In this short span of life that I’ve lived, I have learnt to fight. I have learned that staying upset and being depressed only take one backwards in life instead of helping us move forward in life. After all, why not live with my head held up high as long as I’m alive. Breaking thousands of stereotypes, ignorance and barriers, I have completed O level. This is a huge deal for me. I will not be able to explain in words how happy it makes me. I’m also preparing myself for A Level exams to be held in January next year. I hope that people feel motivated seeing me because even after having such disability, I never look down. A person like me has the same rights as the other people. I believe disability is not inability, one can reach their desired goals in life with their strong will and support from family. My dream is to pursue higher study in inclusive education to continue self-advocacy and rights activism towards an inclusive society.

The writer is a young disability rights activist & ambassador of Tauri Foundation