Understanding disability

Kazol Rekha lives in a small village in a flood-prone area in Bangladesh. When she was young her parents died, one shortly after the other. Her brothers looked after her and arranged her marriage.

But then, more tragedy. She fell off a chair and damaged her spinal cord leaving her unable to walk. Her husband left her and remarried, and her family changed their attitude towards her. 

Kazol says, ‘Previously I was treated with affection by everyone in my family, but that all changed after the accident. I was neglected and I became a burden. It was difficult and painful. I suffered a lot.’ 

Everybody expected her to stay a burden, an extra mouth to feed, and nobody thought she could contribute in any way to her family and community. 

The vicious cycle

One in every seven people has some kind of disability. And most – 80 per cent – live in low- and middle- income countries. 

This is because disability and poverty are closely linked in what is often called a ‘vicious cycle’. This means that people living in poverty are more likely to become disabled, and people with disabilities are more likely to be poor. 

Disability as a consequence of poverty 

Inadequate shelter, unhygienic living conditions, malnutrition, lack of sanitation and unsafe drinking water – combined with poor access to health care – are all leading causes of disability. So communities that have high levels of poverty are also likely to have high rates of disability. 

Disability as a cause of poverty 

Many children and adults with disabilities have limited opportunities to go to school, work for a living, enjoy family life and participate as equals in society. Often this is not because of their impairment, but because of the stigma and discrimination they face. In many cases their voices are not heard and their needs are overlooked. They may also face additional costs such as specialised health care and equipment, further increasing the risk of poverty for them and their families.

What if things could change? 

Life changed again for Kazol when a local organisation started to work in her village. She was given a wheelchair which meant she was no longer totally dependent on others. 

She says, ‘Before the wheelchair at least two people had to carry me to the toilet and the well. It was a big thing for me when the wheelchair came and a ramp was put in to make them accessible.’ 

Kazol also received training in how to grow vegetables and rear chickens, and she was able to save some money. With that she bought a sewing machine. She now lives in her own house and earns money by working as a tailor. 

Leading role 

The life of a person with disabilities can completely change when some of the barriers they are facing are removed. In Kazol’s case, she now has mobility, a safe and hygienic living environment and is able to earn money. This has led to changes in attitudes in her community, where Kazol now plays a leading role. 

She says, ‘I am president of the Ward Disaster Committee. We have early warning and evacuation systems in place and we make sure that no one is left behind. 

‘I was always afraid when there was the chance of flooding, but I am not afraid anymore. I feel proud of my role in the community: people did not know what to do and now I am there to help them learn. I feel good!’

Barriers

Almost everyone will be temporarily or permanently impaired at some point in life, and many who reach old age will experience increasing difficulties in functioning. But not everyone will experience disability. 

One approach (the one we are taking in this publication) is to consider disability as being mainly caused by barriers in society, not by the specific impairment that an individual might have. Rather than focusing on what a person cannot do, this approach focuses on how the environment around the person can be changed to allow them to live their life on an equal basis with others.  

For example, Kazol was disabled by the fact that she could not move around freely or live independently. She was also disabled by the negative attitudes of the people around her. Once she had a wheelchair and an adapted home, she was no longer restricted by her impairment (limited movement in her legs) and her level of disability was reduced. Community attitudes towards her changed and she regained independence, choice and control over her life. 

People with disabilities are affected by four main types of barriers. 

1. Physical barriers: for example, when people with limited mobility cannot access a building because there is no ramp. 

2. Barriers caused by people’s attitudes: for example, when people assume that children with disabilities cannot go to school or join in with community activities. 

3. Communication barriers: when people with different needs are unable to access the same information as everyone else because they cannot see, hear or understand it. 

4. Institutional barriers: when the needs of people with different impairments are not taken into account by organisations, governments, law enforcers and others. 

Recognising and removing these barriers can greatly improve the lives of people with disabilities, opening up opportunities for education, meaningful work and participation in social, religious and political life. The vicious cycle described above is challenged and broken, and the emotional and material poverty experienced by people living with disabilities is reduced.  

Visit www.endthecycle.info/stories/kazol-rekha to watch Kazol tell her story. The video is available in English, Spanish and French. 

www.lightfortheworld.nl/welcome

Knotty problem

Question: Is it too expensive to include people with disabilities in all areas of society?

Answer: From a moral, social and human rights point-of-view, the exclusion of people with disabilities from any area of society is completely unacceptable. 

However, is it economically possible for communities to become truly inclusive, particularly in areas of the world where there is not much money?

Here are some of the many reasons why the full participation of people with disabilities in society makes good financial sense. 

• Inclusive education increases employment and independence, reduces poverty and encourages everyone to contribute their talents and creativity. It also means children can stay with their families instead of going to specialised schools which might be expensive and far away (or unavailable).  
• Greater independence means fewer people need financial help from the government, where such help exists. It also releases caregivers – often girls and women – to study and work. 
• Better access to health care, including self-care, reduces medical and employment absence costs. 
• The creation of new jobs, such as sign language interpretation and caption writing, increases employment. 
• Accessible buildings, toilets and water points benefit everyone, including children and older people. 
• Fully inclusive disaster risk reduction saves lives and property, reducing the social and economic costs of disasters.  

Of course the real benefits of inclusion are not just narrow economic ones. But there is no doubt that inclusion does help society economically. 

So perhaps the question should not be ‘Is inclusion too expensive?’ but, ‘Why have people with disabilities been excluded for so long?’ 

Answer provided by Klaas Aikes and Ambrose Murangira at Light for the World.  

Email: [email protected] or [email protected]

Further reading

Hesperian guides

Disabled village children available in English and Spanish. 

Helping children who are blind available in English, French and Spanish. 

Helping children who are deaf available in English, French and Spanish. 

A health handbook for women with disabilities available in English, Spanish and Nepali. 

These practical and informative guides can be downloaded free of charge from https://hesperian.org/books-and-resources Printed copies can be ordered by emailing [email protected] or writing to Hesperian Foundation, 1919 Addison Street, Suite 304, Berkeley, CA 94704, USA. The manuals cost between 15 and 25 USD.