JUBIN VARGHESE is a disability specialist and has been a member of India's Uttarakhand Cluster since it began. In this interview, she tells us about the Cluster's impact in Uttarakhand during that time.
Tell us about your work. I work with an organisation called Emmanuel Hospital Association. We’re a group of 20 hospitals, and I’m based at one of them: Herbertpur Christian Hospital is part of the Uttarakhand Cluster, and is the lead NGO for disability in the Cluster. I help run a community-based rehabilitation programme there.
What is community-based rehabilitation? Many people with disabilities - especially children - would usually have to travel for over an hour to get disability-specific help, which can mean that the parents would lose wages for that day of work. We do assessments and therapies for the children in the community, and we train people from the local community to look after the children. That is key, as it means that the knowledge remains in the community rather than with a few professionals, who can sometimes pretend like we know everything – we don’t! And so even if the professionals leave the community, a level of support will remain.
You’ve been involved in Uttarakhand Cluster for a long time – what have you seen change in that time? In the past, a lot of the health-based organisations in the Cluster were not involved with disability directly. Often disability was seen as a specialist field – like you have to be trained in it to be thinking about it. But over time, we have had conversations about disability and a number of 'Linking2Learn' trainings about disability. We've also helped organisations receive small grants to start thinking about and working on it. This means that disability is now a “natural” conversation to have – that has changed in the Cluster.
We also now have 'Disability Champions' within each organisation – one person who has been trained to recognise disability, who knows the connections in different organisations, so they can immediately refer and get things done. So the speed with which intervention can happen is faster, and people don’t get lost in the system.
Organisations were willing to come together for it, even if it wasn’t a priority area for them; because we were in a Cluster together, we were willing to listen to each other and learn.
Were you surprised by how responsive the organisations were? Yes, because many organisations – not just in Uttarakhand, across the country – would think twice before getting involved with disability. First because people see disability as a specialist area. But second, because disability is a place where you do a lot of investment but you don’t always have amazing "success stories". You begin to define success differently – it’s not the number of groups you run, it’s not the number of water tanks or houses you build – success goes beyond that. You begin to define success in terms of each life you have the privilege of touching or getting involved with. And that’s a paradigm shift.
What do you think is the Cluster’s biggest achievement? Sharing resources and working together. Even within one organisation, you can sometimes have difficulty working together. We might have two or five organisations coming together, where the philosophy is often different, the work styles are different, the reporting patterns are different… and yet people are working together and supporting each other and learning from each other. That, to me, is the success of any network, where organisations can step beyond themselves and say "how can we come together to address this issue?". Be it disability or any other area, when organisations are willing to set aside their individual identities to come together as a whole, that is the greatest success.
What is the biggest challenge your Cluster faces? From my perspective, I think it would be communication. Because we are living in a changing climate in our country, dynamics are changing. When we have these new challenges coming up, the strength of the Cluster is in its relationships. As a network grows we can get focused on activities and forget relationships. The foundation for relationships is communication; so being intentional about communicating, keeping those communication channels open, building those relationships up, continuing to invest in relationships. That's an ongoing challenge.
Has being in the Cluster impacted you in a personal way? I have had the privilege of friendships that have now lasted a decade, outside of my organisation, and of knowing people who I may never have met if not for the Cluster, people who don’t live close by. And because I have the privilege of being part of the Cluster and getting involved with trainings, I learned a lot in terms of disability training. I trained clinically to work with disability, but the community side of disability I learnt along the way being part of the Cluster. Being involved in the community gives me wider perspectives and allows me to consider differing ways of doing things.
Something we hope for is that larger Clusters, like Uttarakhand, will be able to support and mentor newer and less confident Clusters. Is this something you see happening already? Yes – for example, some of us were there in Dimapur when North East Cluster started. There was value for them in it – there are lessons we have learnt about things not to do, and maybe things to do. But the other way round, it helps enthuse us. After being in the network for a while, you sort of forget your first love, you forget the excitement and the energy. So when they ask us questions – 'why did you make those choices?', 'why did you do that?' – it makes us talk and think and remember again. And there’s a big sense of gratitude that your Cluster has survived. You can take it for granted, but when you're asked these questions, you think “yeah, we’ve managed ten years and more, that’s a miracle in and of itself.”
Thank you so much for speaking with us, Jubin!