What it means to be poor and disabled

On World Disability Day, here’s a question to consider: how poor is poor? What factors go into deciding who is and who isn’t? And crucially, does disability make it more likely a person will be poor?

The Oxford Poverty and Human Development Initiative — a UK- based research organisation dedicated to reducing poverty — recently published a study on the multi-dimensional aspects of poverty and it’s more important than its bureaucratic description might lead you to believe.

Because two families can have the same income but drastically different standards of living, depending on education or health, just to name two critical factors.

And policy makers try to tease out which factor may be more important in reducing poverty overall: does improving access to water make the biggest difference or does it make more sense to educate children well?

The “Multi-Dimensional Poverty Index” is a list of just ten very specific questions, grouped in three categories. Education and Health get two questions each while Living Standard gets six.

In education, the indicators for poverty are that no one in a family has completed more than five years of school and/or that a school-aged child (6-14) is currently not attending school.

In health, if a married woman or a child under three is malnourished or a child under five has died, that family is predisposed to poverty.

In living standards, the predictable lack of electricity or drinking water are side-by-side with “Lives in a kacchaa house” or “Cooks with cow dung or crop husks.”

I was curious to see where disability came into the picture and was surprised (yet not) to find that it appears only obliquely. Since most children with disability do not go to school in India, their existence does figure as a factor in the education question, yet without awareness or analysis.

Similarly, since many, if not most, are malnourished, they would be counted as factors in the health questions too.

But this doesn’t even begin to do justice to the tumbling into poverty which disability almost guarantees for all but the most secure families.

My family is secure. In fact, I consider us reasonably well-off. Both my husband and I have jobs, we own a house (and it’s pucca ), our kids have all attended school for many years and no one is malnourished.

Yet our daughter Moy Moy’s disability consumes more than 2/3 of my salary and most of my free time.

Were it not for the medicines, the tubes, the special feeds, the nebuliser, the wheelchairs, the diapers, the extra household help, the frequent illnesses her condition creates and the lack of spare time for me to pursue my writing as a second career, we might be rich.

As long as neither of us has an unexpected crisis, we are lucky to be able to afford what Moy Moy needs to live a life of comfort and dignity while still maintaining our own health and well-being.

For most people, especially in countries like India, that simply isn’t possible.

Poverty is hard on everyone who lives in it, but for people with disability it is much worse.

What’s the point of that indoor toilet when you physically cannot get to it, no matter how close it is to where you are sitting.

Imagine hunger when you cannot feed yourself what limited food there is or if you cannot swallow. Try to picture yourself thirsty, on a hot day in June, with water on the table but with arms that don’t have the strength to lift the jug and pour it out.

We are incredibly lucky not to ever have to imagine these scenarios for Moy Moy.

But when I am dealing with a tube-feeding crisis (a simple bout of coughing sends her lunch flying all over the kitchen) or her severe constipation, I think about how it would be if – on top of all that we are already coping with – we were also poor.

The Multi-Dimensional Poverty Index should include disability as an indicator and the Government of India should take note.

Nearly 15 per cent of the world’s population, according to the World Health Organisation, live with special needs and are, by definition, predisposed to being poor.

They need more resources to achieve the same standards as typical people, yet they have fewer, if any, ways to earn. And they get very little understanding, let alone sympathy or support from their better-off fellow citizens.

Amartya Sen, on whose work the Poverty Index is based, comments: “It is amazing how smug and inactive most societies are about the prevalence of the unshared burden of disability, from which purely income-based views of poverty… only distract attention.”

The Multi-Dimensional Poverty Index is not purely income based, and that’s a promising step. But clearly we still have a lot more to do before we can understand the true nature of poverty.

On World Disability Day this year, let’s think it all the way through. It’s bad if you are poor. But if you are poor and disabled? Do the math.

The writer is with the Latika Roy Foundation, which works with children with special needs. December 3 is World Disability Day.

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