Unpacking the Journey

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Every now and again my own rhetoric gets taken down a notch. I spent a few hours digging down into inclusion, not as a thought experiment, but as an analysis of the “state of the state” in inclusive post-secondary education in the state of Pennsylvania in the United States. One might think that the idea of people with intellectual disabilities in university is not one relevant to the inclusive work in India, but these days most everything I engage myself in seems to lead to my relating it to the national ‘state of the state’ of people with disability in India.

My colleagues and I were lamenting the fact that so few “inclusive post-secondary” initiatives have a vision for the full inclusion of students with intellectual disability in regular campus life (feeling a bit superior, I might add, since WE all seem to be so clear). As good human service inclusivity-types, we immediately began talking about “the journey” of inclusion remarking that “as long as they are on the path” we are good, and incremental progress is what matters.

The man responsible for the very first inclusive post-secondary program in North America, started in 1986, spoke up. He reminded us, unequivocally, that inclusion of people with disabilities is not a journey. In fact, decisions were made all along the way that caused segregation and that prevented people from experiencing typical places, people, activities, and societal roles that more valued people take for granted. This brought the discussion to a sudden stop, as we all sensed the truth and the strength of this statement.

Inclusion, by which I mean the inclusion of people with disability into everyday life and all its aspects, often gets referred to using the metaphor of a “journey”. In fact, the work Keystone Institute India is involved in has been conceptualized as supporting practices which move away from segregation and towards inclusion – a journey per se.

Indeed, there are many ways that “inclusion” gets conceptualized. These metaphors may make “inclusion” seem easier, may soften the sting of segregation, and may be forgiving to us who hold these mindsets.

  • Inclusion as philosophy/ideology/value: Inclusion is an idea, a ‘state of mind’,  not an action – holding the idea is enough, and no action really needs to be taken
  • Inclusion as theory (An idea which can be proven or dis-proven as to its merit or validity)
  • Inclusion as feeling (as long as I and others “feel” good, are happy, and feel like we belong, that’s good enough)
  • Inclusion as ‘the dream’ (we may never “get there”, that is perfectly OK, and we can look longingly at it as people continue to be segregated and left out for another decade or two)

I think we would do well to study these conceptualizations, for each seems to pose some dangers and within each sits the potential to hold us back. In India, discussions about inclusion are everywhere. I think we need to hold our promotion of inclusion to a rigorous standard. We need to challenge each other to define what we mean by inclusion. I have started to use the definition of integration used within Social Role Valorization in my talks and consultation on inclusion, and it is often is a bit of a hard pill to swallow. Doing “typical things with typical people in typical ways in typical places” is the shorthand I use for this, and it seems to cause a pause maybe a bit similar to the one in that meeting about post-secondary. A pause that we should, in trying to ease the way forward, be mindful that sometimes we need to tell the truth clearly. Say it out loud. Acknowledge it. Then move on, stronger and more sure, and a little less likely to listen to the lullaby of “it’s a journey”. We do need to be purposeful, clear, committed, and truthful.

A Foundation of…. Icebergs?

imagesMetaphors have great power to shape our mindsets, govern our ideas, and make things crystal clear. Today, I was in a forum to discuss the strength of a movement. The metaphor of a “foundation for inclusion of people with disability” was used, and we all immediately identified with it. Every building needs a firm foundation, made of solid concrete, or strong steel sunk deep in the ground. Otherwise, we are a house built on stilts, easily swayed by a change in the weather. Good metaphor, indeed.

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We immediately began to work on what those foundational concrete blocks might be…great policies, strong models, documentation proving best practice, committed staff, standards of inclusive practice (i.e. is 50% inclusive OK, or is it 80%).  Great to get a handle on this, and a seemingly sensible approach.

However, a second metaphor was posed…one that struck me hard. Perhaps the foundation is not made of concrete block. Perhaps the foundation of our house of ‘inclusion’ is made of icebergs. At the tips are the visible icebergcomponents –policies, program models, rules, standard operating procedures, staff commitment, effective procedures…beneath sits an unseen mountain of commitments to people, values, depthful understanding, sense of purpose, history, biases, passion, world views, spiritual and societal beliefs, and desire for change. The tip is easy to formulate – just find the right model, develop the right protocol, replicate a ‘best practice’, determine the proper quality indicators, write the standards for inclusion.

And, yet, the result will, in the end, be driven by that massive, unseen, powerful part of the iceberg. I suppose what is under the tip of the iceberg will remain a mystery, by definition. By its nature, we may never know it all. However, our acknowledgement that it exists, that it is powerful, and that it drives what will in fact bloom from our efforts commands my attention today.

Thanks go to the good people at the Pennsylvania Inclusion Higher Education Consortium along with today’s thought provocateur John O’Brien for this rich discussion and where it may lead.

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.