12 people from 3 different organizations – The Hans Foundation, Keystone Human Services International, and the Rural India Supporting Trust – joined together this month for several days to see how we could envision and describe an India where everyone belongs. When we say everyone, we mean everyone, and that includes people experiencing disability. This experience of capturing a possibility, or a guiding star, is the work of the heart, work which will soon require us to put our heads to our work, and then our hands to move towards that vision.
As I find is often the situation with any creative process, we sometimes struggle with putting words and images to big ideas and complex, important notions. Sometimes, when this struggle to convey happens, someone can frame that idea into a metaphor of sorts. When this happens it is a wonderful and powerful gift to the process, and one which captures the essence of something to allow that ‘big idea’ to be harnessed over and over again to quickly and easily be recalled in all its nuances.
During our meetings, we had a discussion to discern our shared guiding values and beliefs about the work of helping Indian people with disabilities to experience full, rich meaningful life. General Surinder Mehta, the CEO of The Hans Foundation, offered a rich story to us to illustrate several critical points and realities about working with people who have often been betrayed and forgotten. It involved a family living in deep poverty who was visited by community workers who wanted to help. Instead of replying with great thanks and appreciation, the family responded by indicating that they had received many offers of assistance, and yet, their immediate concern was the roof which was leaking in their small, cramped quarters. It was the rainy season, and the wet was causing sickness and misery within their family. They noted that this situation had persisted for a very long time, while a host of well-meaning social workers and passionate charity organization representatives, government workers and politicians had come and gone, come and gone, come and gone again. All meaning well, all making promises of great changes to come, all good people. Promises from government programs, new initiatives and schemes have come and gone, and yet the leaky roof remains.
One of our planners gave this parable a name – “Leaky Roofs Matter”. It has become our working shorthand for a number of important and connected issues that relate to the work these three organizations are doing together.
The first issue has to do with the notion of “first things” – we often refer to this as “most pressing need”, and it is important guidance to any organization trying to make life better with and for people with disability. This means that some needs that people may have are more important that others, and it is fruitless to try to address other needs until that need has been met. A common example we often find in services to people with psychiatric disorders, or mental illness, is that the most pressing need people experience may be crushing poverty instead of the mental disorder they are said to have. As a result, this “fundamental attribution error” can cause us to waste people’s precious time and lives in all sorts of therapies and with all sorts of drugs when the condition may be intractable until the person is relieved from the some of the brutality and stress of living in poverty. Just an example, but one which is ubiquitous.
The second issue has to do with loyalty to the person impacted by the issue. As the good General noted, we simply cannot lose sight of the man or woman on the street – this means that whether a measure is focusing on the individual, community, or societal leave, we must not lose sight of the vulnerable person and their family. A program is only as good those working on its behalf see those it serves as much like themselves.Its leaders and workers must try continuously to see the world through the eyes of vulnerable people as much as is possible. Sometimes this means we have to make ourselves (and our associated organizations) small so the people we serve can be big.
Lastly, and perhaps most importantly, “Leaky Roofs Matter” implies that we must keep our promises. Vulnerable people have been promised change over and over. The charity mindset implies that the people who are being helped should be grateful for anything and everything that is given to them, whether it is what they need or not. The medical mindset implies that people will “become well” from treatments or service. Predominant service models of congregation and segregation imply that people will gain belonging and safety from being put apart and away from typical people and community. None of these widespread mindsets have consistently met people’s pressing needs, and yet they rage on in practice and theory. If we are to use a different mindset, one where we listen carefully to people with lived experience; one where we see individual people and families as unique, with a unique set of experiences, gifts; and one where we and stand by with and for vulnerable people, we are likely to chip away at the mistrust, suspicion, and weary sense of resignation that our biggest and best ideas are sometimes greeted with. As our friends and colleagues Norman Kunc and Emma Vanderclift say in the Credo for Support with wisdom, “Do not work on me. Work with me.”
Thanks to this metaphor, all of the above issues, which might be powerful enough to build an organization on, or at least a coherent service design, are now available to those of us working in concert within our initiative in India in nearly ‘total recall’ by saying three simple words, “Leaky Roofs Matter”. Those three words are now a strong safeguard and a potent builder of culture.