In this #HumansCare feature we would like to introduce Mary Wickenden, a disability researcher who specialises in inclusive and participatory research. Mary has worked on disability focused research projects, as well as intervention and training projects across East Africa, Southern Africa and South Asia including the research she has conducted for us. We spoke to Mary to find out more about her role in Carers Worldwide. 

Tell us how you first became involved with Carers Worldwide?

I have been informally involved with Carers Worldwide from its early days. Acting as a ‘critical friend’ or sounding board, I have supported Carers Worldwide by providing research guidance and knowledge on disability data and theories.

What made you interested in the work of Carers Worldwide?

As a medical anthropologist with a specific focus on disability, I have an interest in learning about the lives of people with disabilities, their families and communities in low- and middle-income countries and in thinking about ways to make their lives better. As the only organisation working exclusively and strategically with unpaid family carers in the developing world, Carers Worldwide provides an opportunity to explore the role of carers of persons living with disabilities.

Mary leading a workshop

What has been one of your main contributions to Carers Worldwide?

One of my key activities with Carers Worldwide has been my involvement in the film project (Invisible to Visible). This Wellcome Trust funded project was conducted in collaboration with SACRED in Andhra Pradesh, India. The purpose of the project was to make a film with 30 inspirational carers who look after their disabled relatives, in the hardest of circumstances. In this role, I ran a series of workshops and activities during 4 visits over the two years, with the staff and carers. The aim was to prepare and support everyone for the film making process and to evaluate its impact once it was shown to a range of audiences. The experience was amazingly rewarding, challenging and heart-warming.

What was the impact of your main contribution?

During the workshops we gradually got everyone comfortable in working together as a group and telling their stories to one another. The process helped carers develop an understanding of their situation as carers and also understand others’ experiences. It was an emotional experience for everyone involved, but fun filled as well. I hope you all agree that the resulting film featured a powerful set of messages.  

Any final comments?

I hope to continue to collaborate with Carers Worldwide by providing further support to research and evaluation activities at their intervention sites. Whilst it is very clear informally that the Carers Worldwide model is effective at changing the lives of carers, formal evidence collecting is needed to validate this impact as this will enable the work to be rolled out further. 

We would like to thank Mary for her contributions to our work and look forward to collaborating together on future research.

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