Leaky Roofs Matter: The Strength of a Metaphor

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.

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.

 

 

 

 

 

 

 

 

 

 

 

Trust the Process, Trust The People


One of the major themes within my own teaching and workshop content via Social Role Valorization theory and the field of human learning that is so relevant to each of us is the importance of imitation and modeling as “hands down” the most powerful force there is for both teaching and learning.

Like it or not, we model the behavior of those around us, and learn by watching and imitating.

This is one of multitude of compelling reasons why separating and congregating people with similar competency impairments or disabilities usually spells trouble for people. We can argue well using civil and human rights to freedom from segregation, using the image damage that is done when devalued people are gathered together by others, and we can argue well knowing what real danger vulnerable people face once society gathers them all together, apart and away. De-individualization, mistreatment, and brutalization is nearly always the result, despite what are often the best of intentions.

Here, though, I am thinking only about the practical issues of role modeling in my own experience while conducting the first KII  learning event here in India. I had a powerful dose of it this week. A small school and vocational training program located here in New Delhi, agreed to allow Keystone Institute India to “pilot” a brief workshop/event in their program, gathering together over 20 family members of children and young adults with autism. Who better to kick off our work in India than Thomas Neuville and myself, seasoned international educators? I had a game plan, prepared relentlessly, and brought lots of impressive handouts and PowerPoint slides, ready to inform and educate right off the bat. About 45 minutes into the workshop, a courageous mother spoke up loud and clear, and let me know what I was offering was not what she needed. Recommendations were made to change things up, and so that is what we did. Within 5 minutes, paper was on the wall, and we were all engaged in a lively and robust debate about the current realities for people with disability and their families, what our vision was for the future, and what needs to be done to move that vision forward. The ideas and analysis was captured in a visual way, and I was even given a second chance to wind the ideas I had intended to teach into the work, this time with good result.

Lessons, lessons, lessons, and it is I who am learning from them.

  1. People’s time is precious and it matters.
  2. People should be given what they really need, and simply because we have a tool to offer them does not mean it necessarily meets their need.
  3. When people show us that what we are giving them is not meeting their needs, we need to bend, change, listen, and do something different.
  4. We should speak up and out with courage when we discern our own needs.
  5. People need to know others well and listen deeply in order to try to understand what is really needed.

In the space of a short workshop, we have so many learning parallels to how we must think about human needs and the needs of people with disability. Listen, observe, learn, respond. Sometimes sitting at the feet of those with lived experience is the best role modeling we can do. If we just implemented the above 5 notions at the core of human services and programs, that would be a good start to effective and relevant service. All role modeled by one woman who spoke up and spoke out.

Partnerships Amplify Efforts and Actions toward Inclusion

Partnership is an amplifier.  It multiplies possibilities, stirs creativity, pools talents, and makes us able to accomplish more than any of us ever could on our own. It can also humble us, makes us flex and bend, and can prevent us from narrowing our vision. When it comes to serving vulnerable people, partnership has a deeper level of meaning and impact. Partnership is only as valuable as the direct and indirect influence it has on the lives of people we wish to benefit.

Our first two weeks after opening our office in New Dehli has been full of new experiences, connections, and re-connections.  This week marks a much-anticipated planning retreat to be held over the next three days with The Hans Foundation leadership and program staff, and Keystone leaders.   In it, it is our intention to amplify the unique synergy and shared values that have drawn us together from our first meeting over 2 years ago.  Through our work in January traveling across India with THF staff talking with and listening to people with disability and their families and advocates, to our work studying the less formal community-grounded supports in the Republic of Moldova alongside THF staff, we have each grown from our work together. It is time to translate that growth into action.

Now is the time that we must turn our attention towards our combined impacts on people with disabilities and those who care about and for them. Our gathering begins tomorrow, and extends over the next three days. It is our intention to strengthen our commitment to our shared initiative, expand our vision, and think with clarity about the ways our work will impact some of India’s most vulnerable people.  Partnership has a payoff, and it matters.