Invitation

I astonish peopleYesterday, I asked a question to a group of about 40 people from all walks of life, gathered under a hand-constructed hut providing afternoon respite from the hot Tamil Nadu sun. Sitting, standing, listening intently, are men, women and children, mostly south Indian, from this rural part of Tamil Nadu.  People from the surrounding villages, people connected in some manner to this fledgling but beautiful effort in the district of Villipuram to bring together people with and without disability in communion, community and relationship.  All of these people care about restoring the plot of land they have to fruitfulness, and restoring themselves and others to the notion of community that, for many of them, has rejected them so profoundly. Some young people in the group are volunteers from Spain, France, the Netherlands, and Germany, here for a few months or weeks to try to move the world forward a bit. Most, though, are from right here in Tamil Nadu, and have stories of brutality and rejection to tell that would make your hair stand on end. They are people who grew up in orphanages, or were abandoned in hospitals, or had stones thrown at them, or were told, quite literally, that there is no place for them in the world. There are also families and those who have been caught up in the vision that this little place holds for us to learn how to be together.

It’s a question which seems unaskable, when standing in front such a group.  It’s rude. It seems an affront, an impossibly personal question when one considers the truth about what we as humans have perpetrated on such people and their families. I steeled myself, and asked what their vision was for their lives and for the future. Seems a hard thing to ask someone who is in a small lake of calm after a sea of trouble. It’s a lot to ask. And the answers came flowing.  Many people even stood up, came to the front of the room to be heard by all of us. Such dreams we humans have. Such robustness. And here is one of the statements that caused a small shift inside me.  One that I believe made an impact on each of us in that gathering in shelter from the harsh Tamil sun.

“I want to be invited to come back”

What a bold and powerful assertion for this South Indian man to make.  He has been so profoundly rejected, this man.  And yet resolute that it is not enough for us, in these enlighted days, to allow him a seat at the community table.  To afford him some sort of job. To allow him the right to marry. To make sure his children and all others are allowed into what he calls ‘normal schools’, to not ask for his father’s name but to call him by his very own name.

Does he recognize what he is really asking?  Much more than simply a pathway back to typical Indian life, or permission to enter.  That is not enough, not by a long shot. He understands that after such rejection and brutality, he wants to be issued an invitation.  A request.  One that allows him to decide whether such a community should be graced with his investment, his presence, his gift. It seems to me only fair.

His final vision is that he will “astonish people”. That his children and grandchildren will sit all around him in respect, and look to him for wisdom.  Again, it is only fair.

Go Up

“When in doubt, go higher.”

Dr. Wolf Wolfensberger

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This was not advice about avoiding floods or choosing a hiking path. It was advice about our thinking.  When we are working with an idea, or a thought, or a phenomenon, or a struggle, we must strive to push our thinking to a higher level – to address universals rather than individual particularities. This was a great gift frequently offered by Dr. Wolfensberger to those he mentored and taught over his many years of change agentry around the plight of and possibilities for people with disabilities.  It has come into my mind many times this summer as we prepare to gather together a group of leaders in India to discuss, learn about, and push our own thinking about crafting a positive future by, with and for people with disability in India.

In just a few short weeks, a team from 3 countries will be introducing the core ideas of Social Role Valorization to India for the first time. A group or 40 or so leaders from across India will meet for three days to immerse themselves in the foundational ideas that have been so important to laying the groundwork for moving away from segregation and devaluation, and towards integration and full lives. In our preparations, the core trainers have been discussing SRV examples to illustrate the “big ideas”, such as the culturally valued analogue, role circularity, and the conservatism corollary.  Heady ideas, exciting, and ones that fit fairly “high” on the hierarchy of universals. They are also ones that we can easily illustrate and bring to life for Indian people from our years of work in the US, Australia, and the Republic of Moldova, respectively. In doing so, we risk the response earned by missing the nuances of Indian culture and society which will cause people to respond with “not here in India”. On the other hand, we can tailor our presentations to be specific only to India, and in doing so no doubt get it wrong in truly understanding what we are seeing and, perhaps “shoehorning” Indian experience into our own set of principles.

“Go Up”, we hear.  In this context, I think it means two things:  “Trust the Ideas”: Remember that the ideas we are teaching within Social Role Valorization are based on universal societal principles.  They matter and they apply wherever human beings live in community.  “Trust the People”: People have the capacity to interpret ideas, generalize them, adapt them and then make them specific to their own context when it makes sense to do so.  I look forward to what will be a potent mix of strong ideas, personalized illustrations, adaptations, and, I essence, all taking a leap of faith together. People matter, ideas matter, and, when we get stuck, we will “go up”.

 

Great Questions, Answers that Matter

Judith Snow

“A great question refuses to be answered; so it keeps leading us into deeper connections with each other & into deeper thinking.”

– Judith Snow

 

Change agent, activist and friend Judith Snow once said this, and it immediately captured my imagination at the time. Over the years, it has become a powerful tool of practice for me. A rich set of questions can yield immense wisdom when asked of many people, with a genuine curiosity at the core of the asking.

When we first began to think about the work that needs doing in India around disability and equity, and there came an opportunity to do a part of that work, it seemed wise to begin with some important questions that will add richness to the understanding of both the “asker” and the “asked”.

And so has our work begun, not with answers but with 4 simple questions. These questions are being asked in 45 participatory sessions being held across India, and they are being asked of families, people with lived experience of disability, professionals, and everyday Indian people who might be described as community members. The answers to the questions are respected, recorded, captured, and shared back. They also begin to fill out the tapestry before we can ask other questions, the very first questions of service design, “Who are the people?” and “What do they need?”

The four questions which are grounding our work include the past, the present, the future, and the action. Each has profound importance. One cannot know where one is going unless one knows where one has been. One cannot establish a vision without an acknowledgement of the present. One cannot formulate action without sensing a sharp tension between what is “now” and what “should be”.  A discomfort and even chafing at the conditions of today propels us towards a future in strong ways.

The answers are compelling, profound, diverse, and slowly painting a picture of life, hope, change, and possibility, while acknowledging the hard and faithful work that needs to be done.

When we have asked these questions 45 different times, among 45 diverse groups of people gathered in meeting rooms, offices, conference rooms, and wherever people can carve out a space, we will pull together these expressions of pain, knowledge, wisdom, hope, and, yes, direction, into a single snapshot which will boil down this work into one rich view. This informs the work of Keystone Institute India, can inform the work of many others, and will in some sense cause change simply by having asked elegant questions that echo in people’s minds and hearts for a long time.

“What is the HISTORY of people with disability – in your society, your neighborhood, your community, your family, your life?”

“How are things NOW?”

“What is the VISION for the future?”

“What ACTION must be taken to make that vision a reality?”

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One of the most profound moments came for me, as a facilitator, when 12 men and women, all currently institutionalized in government mental hospitals for decades, came to a session and told us of their realities. One man simply stated, “While we have been here for 15 years, the world has changed, but we have not changed at all”.  This observation brought a hush to the room, as all 35 strong of us realized that one of the profound impacts of segregation are the discontinuities with the outside world which get created. Everyone in the room- professionals, families, and others were immediately able to feel the visceral impact of what it means to be rendered an alien in your own culture through having been separated in a timeless, changeless world where you are frozen in time. If we want to do right by people, listening to their experiences of the past, present, and future matters a great deal. Listening is a part of the process, and it may be a part of the solution to the problems of discrimination, marginalization, and oppression as well.

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Who could have imagined?

Who could ever have imagined this moment, given the 50 year struggle to assist people with intellectual disability to take their place at the community table in the United States?

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It is May 7th, 2016, at the Millersville University’s graduation ceremony. It is time for the “Student Address”, delivered each year by a graduating student who exemplifies the university experience. Daniel Castellanos, university student, soon-to-be graduate, theater major, actor, campus activist, and now, commencement speaker, walks to the podium with an easy confidence. He is the very picture of a young man full of promise, and with just the kind of swagger reserved for the young on the exhilarating edge of anything-is-possible.

He begins his speech with a small joke, delivered easily and with charm, and loosens up his audience of regalia-clad faculty and classmates, and their families. He’s a natural.  Daniel delivers a powerful take-home message of exuberant joy and promise for the future. Just the thing to start out this ceremony, which marks a major life moment for each of the students who will take the stage and receive their graduation honors on this day. Cheers ring out – Daniel is one of their own, and stands with his classmates and proud faculty on the verge of possibility – the good things of life are not only possible, but probable and within reach for each of the students, and they know it. Indeed, Daniel is one of them.

Daniel spoke openly and honestly of his intellectual disability as a simple fact which makes up a part of his identity, but it is clearly only a part of who he is. In this company, it seems almost incidental. Hard to imagine that this man spent his elementary, middle, and high school years in segregated classrooms for at least a good part of the time. As for all the students, university success leads most students on a path that is different than they would otherwise have experienced. For Daniel, this is particularly poignant and meaningful.  For Daniel, university success may well mean a path away from ever being defined by his disability, a path away from lifelong client-hood and into lifelong citizenship. For those of us who get to bear witness to this small but exquisite moment, we can see the fruit of our hard and faithful work in some way.

For me, I take heart at the small, exquisite moments that are mostly unheralded but that signal the changes which are stirring within India as the promises made to India’s disabled citizens and their families begin to take root and grow.  I think of the men and women across India  in mental institutions looking with hope towards gaining their freedom, the families who are striving to create a secure future and a decent education  for their children, and the people themselves  struggling to find their own voice and be heard.  We must approach this work of building an inclusive community with pragmatism and grit, but also with unreasonable hope that the extraordinary will happen.  Thank you for this message, Daniel.

 

 

Living Forwards

“Life can only be understood backwards; but it must be lived forwards.”
Søren Kierkegaard

What does the past mean for those of us trying to craft a positive future for people with disability? Understanding backwards, as Kierkegaard reminds us, creates the wisdom to move forward with a strong awareness of what we are moving away from, what we are moving towards, and what we are learning from the journey.

I spent time this week at a conference of the Pennsylvania Coalition for Honoring the History of People with Disability, whose mission is to tell the story of disability history, especially for people with intellectual disability, and learn from that story.  It is one fraught with terrible acts and big mistakes, but it is also punctuated by bright and shining moments of possibility and promise.  Often, the brightest of moments are sandwiched in between the darkest acts and practices.

Of course my mind begins working on the complicated issues of the history of people with intellectual and psychosocial disability within India.  Our work in India has included asking the question, “what is the history of disability within your family, your community, your country?”  We are intensely interested in the answers – so far nearly 200 family members, people with disability, and professionals in several geographical areas within India have contributed.  The picture is being woven together as a broad swath of Indian society  shares their seemingly contradictory experiences of not only profound rejection, but also deep connection and acceptance.

 

 

Pulling the threads of the story together begins to show the journey that Indian society is in the midst of, and that people with disability are living out and experiencing. Hard questions are posed in the telling of the history, that make us think beyond conventional wisdom and glib truisms.  “What is institutionalization?” arose early on in some of the sessions, and we all struggled with this question. Is institutionalization a mindset? Is it a building? Is it a group home or a sheltered workshop?  The word loses context quickly, and makes those of us new to the culture broaden our perspectives and, as a mentor of mine says, “go higher” in our thinking.

Many invested people are telling of the hard work of changing attitudes and fighting stigma in India, and the departure of the pity/charity model in favor of a developmental and human rights model.  I wonder all the while if India must progress through some of the “stages” in western countries that have worked towards community imperfectly and with some strong regrets. If there are global lessons to be learned from history, it seems wise to add those lessons into the mix and allow them to season with Indian people advocating for change. It also seems wise to walk side-by-side with people with disabilities and their families as a human service system is developed, to avoid services which are based solely on professional experts.  It seems wise to craft supports which avoid “community segregation” by clustering people with disabilities all together apart and away, even if that is a developmental phase many societies have gone through and are now trying to dismantle in favor of more natural, inclusive supports. Will the burgeoning Indian economy eventually demand a service economy that relies on expensive professional supports, and if so, how will Indian advocates respond? Talking about this issue now rather than once the issues arise also seems wise.

I greatly enjoy the practicality and straightforwardness of the vast majority of people I have been collaborating with and listening to over the past few months. I appreciate the question, “So what is the answer?” and “What is the correct model?”  Of course, the answers are complicated but lie deep within that fabric of history that lies within a rich and complex Indian society.  What will be learned, and how will the learning be used to weave the next few decades in our ‘forward living’?

When the Indian Coalition to Honor the History of People with Disability (yet to be formed, of course) holds its conference in 20 years, what will the story be, and who will have written it? This question should keep us up at night worrying a bit, but also make us feel deeply motivated to work hard to craft the story that we will have few regrets about.

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.

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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.