The tips are my toes
Illustration by Sarah John.
In the Bangladeshi village where I was born in the early 1960s, most people, even many health professionals, did not know about polio. At the age of three when I was affected by high fever, the village quack gave me an injection to reduce the temperature that he thought had been caused by malaria. The temperature waned – but so did the movement of my left leg from that day on. Having a baby with a disability led to increased tension and anxiety for my family. It posed an enormous question as to how this child could survive through life.
It was only when I took training on the causes of disability, at the age of 30, that I understood that I was affected by polio and the doctor had given me the wrong treatment. Polio is one of the major causes of disability in a community where poverty is high, health services are insufficient and information unavailable.
I also saw how people became affected by lathyrism – which paralyses the lower limbs – when they were forced to eat toxic pulses (locally known as khesari dal), during the famines of the mid-1970s. Women in rural areas do all the hard work at home but get the minimum of the household’s food at the end of the day. Their underweight babies are prone to disability. Poverty is the cause of much disability, and disability exacerbates poverty.
How many people in a society like Bangladesh know about the scientific causes of disability? For many Bangladeshis disability is the result of the sins of the parents and ancestors. Literature, drama and textbooks portraying people with disabilities reinforce the negative images of disability in society. The life of disabled people in the middle and upper classes is even more miserable, as they are kept hidden at home. Such isolation has its corresponding negative psychological impact. Social stigma excludes people with disabilities from having access to rights, respect and justice.
Upward struggle But even a little stimulation and support has the capacity to change lives. While I was passing through childhood, members of my family used to say, ‘You can overcome your disability only if you excel in your studies at school’. Eventually I went on to gain my Masters in Economics. But children with disabilities in Bangladesh hardly have the opportunity to get enrolled in schools because the teachers are not trained, buildings are not accessible, and the attitude of society remains discriminatory.
Ten years ago, I met Shapla, a disabled girl who had dropped out of school after grade three. She was affected by polio, but she was even more affected by the ignorant attitude of society. Teasing and bullying by the other children in the village gradually led to her withdrawal and isolation. Nor did her parents see any benefits in encouraging her to pursue her education. After the parents and teachers received counselling, she was readmitted to school and is now in college.
In Bangladesh social institutions and government mechanisms further the process of discrimination and denial. After completing my degree, I applied for a job in the Bangladesh Civil Service but was refused although I fulfilled all the criteria. It is thought that there is no use in providing jobs to disabled people while there is huge unemployment among non-disabled people. I temporarily lost all my courage to survive when I found that the Government was not the defender but the violator of my right to work.
Disabled women face double discrimination. They often cannot get married or are divorced because of their disability. ‘My family was broken when my hand was broken,’ recounts Halima Begum. ‘My husband married another woman as I was unable to do all the housework.’ Disabled women face serious violence. Women with hearing loss and learning disability are often the victims of rape and murder.
The pain of disabled adults and children from Darfur to Dublin, Dhaka to Darwin is the same. They are discriminated against by society and the state. This sense of discrimination brought about the solidarity and mobilization of disabled people in many parts of the world and gave them courage to bring changes in society. Even in Bangladesh the tide is turning.
Poverty is the cause of much disability, and disability exacerbates poverty
Touching the glacier
Disabled people in Bangladesh are organizing to promote their social, economic and political rights for inclusion in society. Ten years ago, when I went to a village in the Kushtia district of Bangladesh, disabled people were kept hidden at home and it took blood, sweat and tears to organize them. Now there is a strong voice of disabled people that seeks to persuade the Government to fulfil our needs and rights. As social awareness increases, so do our confidence and negotiation skills.
Parliament has passed a disability law and the Government has focused on disability in its national poverty reduction strategies. The Government has also declared a one per cent quota for the employment of disabled people in the civil service.
After much campaigning, nearly 100 disabled candidates participated in local government elections; 16 were elected as representatives, including Halima Begum. They played an exemplary role as election observers in the parliamentary election of 2001. The ice has started to melt.
To be disabled is not what’s hard; it’s how society treats a disabled person that’s inhuman. The life of a disabled person is a panorama of discrimination and struggle. I can recall my days of crawling at home and not being welcomed in schools. To have a pair of crutches was the fulfilment of a dream. My family encouraged me to dream and I learned how to struggle in life. The incidents of discrimination steeled my resolve and gave me the direction that my life should take.
I have visited the Alps, I have roamed on the beaches of the Bay of Bengal, and I have touched the ice of a glacier. I also dream of flying from one planet to another. My crutches gave me mobility throughout my life. The tips, the ends of my crutches, protect me from slipping and falling down in the race of life. But I can’t run – not all people need to run and I don’t mind that I can’t. I feel wounded when the tips are torn, I get the same pain as when my toes are injured. I don’t get peace until they are repaired or replaced. The tips are my toes. The crutches are my legs. These are parts of my body and psychology. Why then differentiate me as a disabled person?