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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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.

A Measure of Humility and a Little Grace

Betsy Neuville and Genevieve Fitzgibbon arrived in New Delhi last week to launch major programmatic initiatives in the inclusion of people with disabilities, particularly developmental disabilities and mental disorders, across India.  The first few days of work shed a small light on the experience of being different, and the need to find allies and supporters to walk the journey together.

Our initial work here in India has already proven to be the source of many lessons which will likely serve us well. As Genevieve and I enter into a vastly different society, with different rules, norms, ways of doing things, and unfamiliar and confusing ways of interacting and relating to others, we get an infinitesimally small experience of what it must be like to be living  next to the typical world, but not fully part of it. Although uncomfortable, it is an experience worth having, and one we will do well to keep close to our hearts and minds as we begin to do the hard work of walking with people with disabilities and those who care about them to create belonging, build strength, and push the boundaries of Indian society to include all.

Of course, we should be careful to compare the experience of two seasoned professionals with a host of valued roles making their way in India with resources and a network of supporters both here and in the US. We also should not pass on the chance to capitalize on our small and temporary experience—a tiny taste of being obviously different from others, having a hard time communicating with others, and experiencing the relentless stress involved in being confronted with situations where everyone seems to know what is going on except you.  For us, the experience of being unable to do things quickly and easily is frustrating and consumes a lot of energy and time.  I tried to explain to my husband, Thomas, how busy we have been this week, and all that we accomplished – setting up phone service, equipping an office, negotiating currencies, working with a myriad of workers, repair persons, drivers, etc.  It seemed like a short list, until he reminded me of the simple fact that, when we are operating in situations where we don’t “belong”, things are exponentially more difficult and our competencies go way down.

Important reminder, that people with disabilities experience continuously, isn’t it? One of the takeaway lessons is that, in order to enter into the world, others who agree to walk beside you, connect you, and simply stand with you make things happen.

So here in New Delhi, our wonderful “landlord family” who lives upstairs from us, has taken us under their wing and assisted us with finding everything from good places to shop to taxi companies that are trustworthy. They have connected us with bankers, grocers, and provided all types of support.  They keep an eye on us, stopping in, inviting us for breakfast, welcoming us with plants that periodically show up at our door, lovingly cared for by the elder botanist grandmother.  One small connection with one family, and the ability to negotiate life, get things done competently, and we become daily more competent and able to manage.

This little magic sparked by a family—Dr. Al Condeluci called these types of connectors ‘gatekeepers’ in his book “Interdependence”— makes the seemingly impossible possible. They also make a connected life visible and real. I’ll take this lesson in grace, humility, and the power of human connection in making all things possible forward in our work here in India.