Setting the Stage for a Lifetime of Friendship and Belonging

by Guest Blogger, Ms. Chitra Paul

On May 29^th, 2020 Keystone Institute India hosted an SRV study group entitled ‘Tis People that Matter, in which the challenges and possibilities of helping people with developmental disabilities establish freely-given, inclusive relationships with typical people were explored. Two articles formed the basis for our rich conversation, and the following thoughtful and instructive reflection and response was written by parent activist and change agent Chitra Paul.

Please enjoy reading about Chitra’s experiences using powerful and effective strategies to assist her 15 year old son, Tarun, to have friendships and relationships which provide such a great foundation now and in the future. For people with autism and other developmental disabilities, freely-given relationships with typical people have sometimes been very difficult to facilitate, given the stereotypes, marginalization, and downright oppression of many such people. Chitra helps us see that persistent, tried and true strategies can be effective in not only sparking genuine relationships, but have a strong positive impact on the mindsets held by others.

 

Read the article  HERE– enjoy!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Signs of the Times

Worldwide, the global pandemic has impacted human lives in many ways, and the impact on communities is being considered and analyzed even as it unfolds. One thing we do know, the Corona virus illness itself has its impact, the response to curtail and control it has different impact, and our own personal and collective fears and anxieties also create circumstances that we can see and feel.

Those of us who study Social Role Valorization across India often find our SRV lens gives us insight into the multiple jeopardies faced by groups of people made vulnerable by society, economics and geography, and gives us a good handle on societal dynamics that work to uplift people, or drag them down.  60 of us – people with lived experience of disability, their family members, and professionals alike – gathered together in 3 different study sessions to give voice to what we are noticing around us.

We thought that SRV principles might help us unravel some of the many extraordinary changes we have seen around us in the past several hard weeks.  All around us, people are living under new conditions that are shaking our assumptions, causing us to connect with others in different ways, and feel very real fears. In this  study group, the group spent time together sharing what we have “noticed” about people and society during the COVID 19 pandemic through the lens of SRV.   The discussions were rich, and captured in these graphics.

Understanding that this was a rich treasure trove of insight, we worked the themes into a brief paper highlighting the themes. To read the paper, click here.

 

A PATH toward Inclusion: Head, Heart and Hands

Does inclusion really mean everyone? When a school decides to follow the path towards embracing the promise of including all, do they know how to proceed? Sangath and Keystone Institute India recently teamed up to explore these very questions and to assist four schools in Goa to move forward towards inclusion as a part of the Beyond Boundaries project.

Sangath has all sorts of technical expertise in promoting successful inclusion initiatives, and was looking for ways to help all four schools start strong and develop their own vision of their own school being a model for inclusive practice, and also grow into a thriving, diverse community of learners which includes students with developmental disabilities. Keystone serves as a national resource for PATH and other tools for inclusive practice, and is cultivating leaders across India who are facilitation experts. This week,  Keystone Institute India facilitated 4 PATH processes at 4 different schools to assist each school community to plan for a positive future by harnessing the facilitation skills of four committed leaders from across India. Two process facilitators, who learned their craft at leadership level workshops in Chennai and Punjab (KII’s own Dr. Neelam Sodhi and Ms. Radha Ramesh from Vidya Sagar) led 4 schools though the PATH process, envisioning the future, and helping the group translate that vision into action – that’s the heart and the hands of change agentry. Mridula Das and Radiya Gohil, talented graphic facilitators  from Pune trained by Keystone Institute India  last March in West Bengal were able to bring the vision and the strategies to  life in vibrant ways.

Ms.  Percy Cardoza, the leader of the Sangath initiative, has deep knowledge about good inclusive practices – concepts like universal design for learning, scaffolded instruction, co-teaching, and adapting curricula. We might think of this as the “head” of inclusive practice. Percy, as a strong leader, understands that the knowledge is never enough, it must be accompanied by passion, enthusiasm – the “heart” and a willingness to put our hands to work in action – the “hands”.

We look forward to catching up with Murgao High School, Our Lady of Fatima High School,Government High School Juna Bazar-Ponda, and Immaculate Conception High School, Paroda in December at a gathering od all four schools to mark progress, celebrate success, troubleshoot barriers, and learn from each other.  Thomas and Betsy Neuville will lead this gathering in Goa in December, along with all four events.

 

 

Masterful Teaching

I am reminded of the complex skill set required to not only know a certain concept, but to know it with  mastery, and then teach that concept to others. Last week in Dehradun, Uttarakhand,  four emerging national leaders in Social Role Valorization had the opportunity to practice their teaching craft in a very potent way.

KII  faculty and staff  Mrs. Geeta Mondol, Dr. Neelam Sodhi, Ms. Bindu Sengar and Mr. Faisal Asraf are no strangers to SRV theory – they have studied it intensely. Each learned about SRV in English, and have studied its implications through English writings and sources only. This past week, they all had the opportunity to present in full-on Hindi, joining a few others in Jaipur who have done some Hindi presenting.

 

We know about the power of imitation and role modeling from our  study of SRV. Many aspiring SRV presenters begin to teach the concepts by using standardized notes, and by watching and imitating their mentors. Of course, this is an excellent way to learn. A step further is to move away from mimicking what we have heard other, more experienced persons say, and moving towards  our own words, expression,  and content, whilst remaining true to the core concepts. This is a huge step towards mastery – making ideas your own, presenting them in your own voice and from your own experience, and learning to respond to questions and challenges by drawing upon a deep well of knowledge.

As if this is not daunting enough, just today I began thinking about just how well you have to know a complex set of ideas like SRV, in order to present and teach them in another language, especially a nuanced and poetic language like Hindi.  Listening to emerging SRV trainers convey the ideas in Hindi is moving to me, and it means that such educators are forming their own deep well of understanding. Bravo to the team.

 

Unpacking the Journey

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 Risky Proposition

Into my news feed this morning came this video, describing the development of a playground in the midst of New York City full of potentially perilous materials such as hammers, nails, saws, and……well….. junk.  To add insult to injury, parents are forbidden to enter. Hard to imagine in this western world of liability, and equally hard in the global South’s world of fiercely protective parents. And yet, research and study tells us there are important and in fact essential benefits to risk that make it worth a closer look.

The article reminded me of a number of things. I live near a mostly Amish community, a faith group that has chosen to reject much of technology as a means to preserve the strength of their community and their religious focus. Although my family is not Amish, we live closely alongside many such families.

Many if not most Amish families are farmers, and very good farmers at that .It always amazes me to see children as young as 4 years old on the roads, unsupervised, with the reins in their hands as they drive their ‘pony carts’ while cars whiz by at high speeds. One could criticize, or at least wince thinking of the danger, but one cannot deny the competencies that are developed from taking such risks.

For people made vulnerable by the impact of disability, protection and ‘safeguarding against risk’ matter a great deal. In fact, in Social Role Valorization principles, we often  teach about the need to ‘bend over backwards’ to compensate for vulnerability. No wonder, with our study and understanding of the wounds of brutalization and death-making. Today, though, I am reflecting on the benefits of risk-taking, and how reasonable risk helps us all gain so many competencies. I believe the concept of the dignity of risk was first described by  Robert Perske in 1972,

Robert Perske (1927-2016)

about the same time when Wolfensberger’s conceptualization of ‘Normalization’ was sweeping the western world. It is a peculiar thing that the western institutions, and the ones I see in India as well, are such a mix of perilous and overprotective, at the very same time. Perske reminded us that overprotective can also be perilous, as people are likely to be sheltered from life’s most important lessons, remain dependent (and devalued) and not get the chances for those ‘healthy stretches’ that cause as to grow in leaps and bounds, gain confidence, and help convince others that we can do, can be, and can become. Unfortunately, the dignity of risk also can be used as a weapon, as when people get hurt or harmed and others say, “their choice, their fault”.

I think the balance between over-protection and under-protection sits at a particularly nuanced intersection for each person, and in all different life areas.  Finding that sweet spot is a part of helping a person to grow and develop. Missing it is to miss a prime developmental opportunity. The famous Russian psychologist Lev Vygotsky  first

Dr. Lev Vigotsky (1896-1934)

described this area with the intimidating phrase, “the zone of proximal development”, but we can understand it as the tension point of PUSH where  just the right amount of risk will allow the person to burst into the next level of learning and growth.

So, there’s a rambling group of morning thoughts about not only the scary side of risking, and the great need for us to know people well enough to help find that sweet spot where failure is not disaster, but where the push point for growth is identified and allowed to be pressed.

References:

Perske, R. (1972). The dignity of risk and the MR. Mental Retardation, 10(1), 24.

Vygotsky, L. (1987). Zone of proximal development. Mind in society: The development of higher psychological processes, 5291, 157.Wolfensberger, W. P., Nirje, B., Olshansky, S.,

Wolfensberger, W. P., Nirje, B., Olshansky, S., Perske, R., & Roos, P. (1972). The principle of normalization in human services.

A Foundation of…. Icebergs?

Metaphors 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.

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 components –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.

Reflections on Social Role Valorization

We recently spent some time in Chennai conducting a day-long workshop at BALM, the training institute associated with Banyan, a leader in mental health services in India. This workshop was organized by several people who attended our training in nearby Pondicherry last spring, who felt a determination to bring these ideas to their city. We spent our time together studying Social Role Valorization (SRV) and discussing how devalued people can access the good things in life. Over 40 people attended this workshop, several of whom will be attending the upcoming four-day intensive SRV course in Delhi. We were pleased to reconnect with our colleagues at BALM, and were especially thrilled to learn of this write-up about the workshop, written by BALM students/trainees. We encourage you to read their reflections for some powerful insights.

 

Happiness is not all it’s cracked up to be….

The Jinn, or Genie, and the magic lantern story leads children to think, “if I had three wishes, what would I wish for?” Some logical and clever young minds answer with the definitive statement, “I wish for unlimited wishes”, thus immediately lifting the pressure of coming us with “the answer”. Not as logic-minded as some children, I remember coming to my own imperfect 6 year old version of the answer, “I wish to always be happy”. Seemed to solve the problem for me at the time.

Little did I know what a vexing answer this is was to be to me, even today.  Many people in service to vulnerable people say that the gauge for the success of a particular effort on behalf of their clientele is the happiness of such people. Nowhere is this more evident than in efforts towards the well-being of people with intellectual and developmental disabilities. I have no doubt that this perspective must be closely tied to our stereotypes that “They are always happy” or  “They don’t really experience anything deeper than “happy” and “sad” – and so are shallow and un-nuanced, simple beings”

SRV leader Joe Osburn meticulously described the problem with the happiness issue in his 2009 article, “The happiness issue: a brief elaboration on a common obstacle to Social Role Valorization”, so I direct those interested to that excellent piece of thinking and writing. In the meantime, I am reflecting on happiness in my own life and those I know. Seems to me that happiness is only taken in fully with a certain measure of suffering. Happiness does not reach the depth of ‘full and rich’, those times that define our lives, help us discover our own capacities, and reveal our purpose and best selves.

As some wise person said, happiness could be said to be having a full box of chocolates, and sadness is when that box is empty. In my own experience, some of the most important moments that define my best self and my hoped for self are those that are deeply uncomfortable, or even contain a measure of pain and suffering. The period of my mother’s illness and passing was, for me, a period of richness and great sadness, and was undeniably transformative. Happy, no, but I would not have missed it for the world. Watching my children ‘become’ has been a source of abiding joy, intense stress, and great fear, alternately and at the same time. Traveling alone for long periods of time is terribly lonely, and also greatly fulfilling. Happiness and sadness come and go in all those life experiences, and in the grand scheme of things seem unimportant and transient.

So, when we talk about how ‘happy’ people are with the services they receive, or how ‘happy’ they appear to be while in our services and program, I try to keep this in perspective.  Happiness in others makes us feel good, particularly when we feel we are responsible for their happiness. This should give us all pause. Rich, full life, made up of freely given relationships, a sense of belonging, a good reputation, growth and learning, and opportunities – now these things count in full measure towards what I want in my own life. I’d like to think they matter more than happiness.

People with disability are fully people, with the complexities, nuances, full range of emotions, drives, and contradictions that reside within all humans. Happiness seems to me to be a transient state and not always worth wishing for, in our own lives, the lives of those we love, and the lives of those we want to stand by, with and for.

 

 

Reference:

Osburn, J. (2009). The ‘happiness issue: A brief elaboration on a common obstacle to Social Role Valorization. The SRV Journal, 4(2), 33-41.

Feeding the Vision in West Bengal

What an amazing time to have a small role in the shaping of a social change that will be written and spoken of for decades to come. A vision of an Indian society in which people with disability have a valued place at the table is emerging, and with that, the consensus that this is a movement which is not only good for people with disabilities, but a part of what must happen for the benefit of everyone.

Although practice lies far behind policy, law and rhetoric, the will is strong and the people are beginning to establish a vision of where they are headed and also why it matters.  A local representation of this unfolded in West Bengal this past weekend, as over 100 change makers gathered at the Kolkata Lions Club to add momentum to this work of building an inclusive India.

Respected, tireless leaders of the movement who have been fighting for decades for a fair shake for people with disabilities shared their lessons from the early days, when people with disabilities were forgotten, ignored, hidden, and left behind joined us for the day.  Dr. Rekha Ramachandran, founder of the Down Syndrome Federation of India, and change warrior in India, spoke truth about the realities of past and present, recounting essential truths to a rapt audience.

New leaders spoke with passion about the progress that is being made, and began to describe the future as we see it. People with lived experience of disability took to the stage to tell of their work in starting entrepreneurial businesses. Families of people with disability, spoke with hope, still mixed with trepidation and worry, of the futures of their sons and daughters.

As I looked over the audience, I saw evidence of our progress by the number of strong leaders who make up the disability movement in Kolkata – those we have met in workshops, planning sessions, and dialogues here in West Bengal and in other places as well. I see the growing confidence of a movement which is finding itself, discovering its own power, and beginning to see the possibilities of an Indian society where everyone has a place and that place is honored.

For me, this day spent with like hearts and minds was rejuvenating and life-giving.  Of particular power for me was seeing that the event was conceptualized by new leaders, such as Amrita Roy Chowdhury, founder of Transcendent Knowledge Society and a woman with a growing vision of what it means to stand by, with and for people with disability. Standing beside those of us who have been in this work for decades, adding their own important perspectives to the common wealth of knowledge, and adding optimism, a sense of surety, and their own images of a future that works for everyone makes for a potent recipe for change. Congratulations to the organizers of this event, Dr. Monidipa Bannerjee, Dr. Rekha Ramachandran, and the indomitable Amrita Roy Chowdhury, and all others who made this important day happen.