Researcher brings hope to disabled living in poverty

Katarina is blind, suffers from severe epilepsy and risks losing the use of her legs because her family cannot afford to take her to a doctor regularly from their remote home in Guatemala.

Until recently the 18-year-old had only been to a doctor once, when she was 10, and was unable to follow up treatment.

To get her out of the dispersed rural area, her aging father has to first carry her on his back through the dirt track to reach a place where a vehicle can access and pick them up. This doesn’t happen too often because they cannot pay the costs.

Now, thanks to a Maltese-run project, emergency healthcare is being provided to disabled people living in extreme poverty, especially those in indigenous populations and rural areas. Many are on the brink of survival.

Shaun Grech, a sociologist who founded and runs the project, recalls the day he and a team of volunteers went to fetch the woman.

“Katarina and her father were waiting for us at 4 a.m. after a gruesome walk up to the dirt track. This was possibly Katarina’s second time in a vehicle,” he said.

“Seeing her enjoy the breeze on her face and laughing was just priceless. She is now being treated by a top neurologist and we will follow through with this.”

The project, funded by the Maltese Foreign Affairs Ministry, was set up by Integra Foundation Malta and is run in partnership with local disabled people’s organisations.

It is supported by the Research Institute for Health and Social Change at Manchester Metropolitan University in the UK, where Dr Grech is a research fellow.

It organises transport, funds private medical care and medication for the disabled and organises a long-term healthcare programme with their families and communities.

People like Katarina are now being given the medical attention that will significantly improve their lives.

“The project builds on years of research and responds to one of the most critical needs and problems – the lack or absence of access to adequate healthcare by the poorest disabled people,” said Dr Grech, 35.

The seed of the project was sown when he went to Guatemala 12 years ago to carry out voluntary work.

“I was young, wanted to help, but quickly found out how little I knew and how much I still had to learn,” he said.

Determined to make a difference, he has been studying ethnographic research on disability and extreme poverty in Guatemala for almost a decade. The next step was to act on his research.

“I am no missionary… I do what I do because there are already too many sedentary academics who make a career out of detachment and talking about the reality ‘out there’ from the safe and sometimes ever so arrogant distance of their comfortable, Western offices.

“There are also too many do-gooders trying to save the world by imposing their own values, beliefs and ways, without listening, without learning, without research,” he said.

Dr Grech bounces between the UK and stints in Guatemala. Being there has its highs and lows.

“The lows are seeing people struggling and suffering the most disastrous health conditions and dramatic poverty, not being able to feed and educate their children through no fault of their own,” he said, adding that the highs outweighed them.

“My high is having the luxury of being with and learning from disabled people and their families.

“It is getting the extreme poor, those normally marginalised and treated like dirt in one of the most unequal countries in the world, to jump queues in five-star healthcare facilities for a fraction of the price the wealthier patients waiting in the lobby will end up paying.

“That’s a moment of great satisfaction,” he said.

Anyone who wants to help the project can send donations to Integra Foundation’s Bank of Valletta account 40014292437.