About Keystone Institute India Keystone Institute India (KII) is a values-based national training institute designed to improve the lives of people with disability across India and to fuel a change movement on a national level, working toward a more inclusive, just Indian society where all are valued and all belong. The work of KII serves as a catalyst for the development of supports, services, and initiatives, which better safeguard vulnerable people, establishes thinking which works towards full citizenship and full lives, respects the voices and perspectives of people with disability and their families, and facilitates India moving toward a society where all have possibilities and potential, and all matter.
Keystone Institute India is a program of Keystone Human Services International, funded by a grant from the Rural India Supporting Trust Keystoneinstituteindia.org Keystone Institute India B-6/22, First Floor, Safdarjung Enclave, New Delhi-110029 +91 (11) 49053452 | Keystoneinstituteindia.org
Table of Contents
Letter from Chairperson - Rural India Supporting Trust
4
Letter from the Director - Keystone Institute India
5
Introduction
6
Our Vision
7
Transformation in Service
8
In the Driver’s Seat
8
Studying the Ordinary
9
The Power of Language
10
Rethinking the IEP
11
A Unique Life to Live
12
Image Detectives
13
Putting the Developmental Model to Work: New Ways of Teaching and Learning in West Bengal
15
Nipping Away at Devaluation
17
Transformation in the Lives of People with Disability
18
Heavy Hitter Roles
18
On Ownership
19
A Vision with a Plan
20
’Tis People that Matter
21
The Real Thing
22
Bending Over Backward to Strengthen a Role
23
Magic@Work
24
Finding the Fit
25
Discovering and Exploring Identity
26
Creating Legacy and Making Our Mark
27
Acknowledgements
28
Page | 3
Foreword by Shweta Rawat - RIST
Jhalak, A Glimpse, presents a window of insight into some beautiful stories about people living across India, who have overcome seemingly insurmountable odds to bring success, community and joy into their own lives and in the lives of their families and friends. Although I have been strongly committed to the well-being of people with disabilities, my desire to promote fundamental change in how people with developmental and psychosocial disability are seen and treated by others was ignited by a visit to a state mental hospital in Kolkata. I left with two rival powerful impressions – one is the inhumanity with which we as humans are capable of treating those we devalue. There are segments of our society forgotten about, rejected and discarded, and this is deeply felt when visiting such a place. My second impression was also instructive, especially when looking for a path forward. I had the chance to meet people engaged in a rare endeavour at such places. This was the creation of a bright space of hope within the bleak hospital environment- Dhobi Ghaat, a first of its kind initiative that empowers the people trapped for decades in that hospital to operate and manage a laundromat that caters to the people living in the hospital grounds. I was struck by the simple fact that some of the happiest faces in the hospital were the residents who were working here. Every individual there had a purpose, a job that they looked forward to every day. Here they could joke with their friends and bicker playfully about their work, but it was their work. Dignified work. Work that spoke to the possibilities still there, for a life that is fully lived. It was after that visit, etched in my heart and mind, that The Hans Foundation and Rural India Supporting Trust took a strong stance not only towards creating alternatives to such places, but also towards finding and investing in ways to encourage life-changing valued roles, to facilitate that very sense of purpose that the men and women I saw in that laundromat embody. Jhalak shines the light on the small changes, ones you might easily miss, that our joint work across India is yielding. These small changes are driven by new mind-sets, and a new understanding of disability itself as a part of the human condition. Much remains to be done, but we should take heart. India is on its way to glorious things. As the country frantically races ahead to establish itself as a super economy, we have to remember those who will so easily get left behind. Economic progress can and should not overlook social progress. The ideas of person-centred planning and Social Role Valorization (SRV) promote and encourage opportunity that is a human right of every individual. I am confident that the networks we have created across the country will grow and it is my dream that these practices will be localized and used even at the village level to help a person decide what is best for his or her life and how they envision contributing to society. Thank you for the opportunity to contribute to Jhalak. The stories you will read ahead will fill you with joy, as they are meant to do. It is important to remember that they could just as easily not have happened, but for the drive and dedication of organizations such as Keystone Institute and other partners across India. Shweta Rawat Chairperson Rural India Supporting Trust Page | 4
Letter from the Director - KII
Dear colleagues, friends, and fellow change agents across India, A Glimpse is a fleeting image to capture our imaginations and give us great hope, and it can serve as a source of optimism for the positive and possible futures for people with disability and their families across India. At Keystone Institute India, we have committed from our beginnings in 2015, to share ideas that matter, such as personalization, Social Role Valorization, person centered thinking and planning, and designing responsive supports and service for people with disability. Our commitment goes further than that, though. We have made a promise that we will build networks across the country to put ideas into practice – to move beyond theory and make the difference that makes a difference. It is my great pleasure to share, in words and images, a few of the small yet consequential actions in the lives of people with disability that have unfolded over the course of our work together. In the past few years of conducting workshops, establishing leadership networks spanning across India, and mentoring and supporting new emerging leaders, our colleagues and partners from many places have contributed these small glimpses of change. Ideas surely have consequences, and the ideas that we are working together to share, simply require that we put them to use. It is my perspective that these small yet powerful actions herald a movement of change that will grow and thrive – a movement towards the recognition that people with disability must have a full and valued place at the Indian table, and that the pathway towards realizing it is clear. So, enjoy these bellwethers of change, these small yet potent signs, that together with our shared vision of a society that works for everyone, is appearing before our very eyes. Indeed, it is my pleasure to offer Volume 1 of Jhalak, to share accomplishment and forward movement. With deep respect and great hope, Elizabeth Neuville Director Keystone Institute India
Page | 5
Introduction
Welcome to Jhalak, a glimpse into some of the inspired actions, large and small, taking place across India towards an inclusive Indian society where there is a valued place for everyone. Over the past four years, thousands of us across India have been exposed to ideas and ways of thinking that are exciting, challenging, and a bit daunting. These idea sets include the introduction of tools to advance highly individualized inclusive practices, with the higher-order framework of Social Role Valorization laying the foundation. We’ve left workshops and facilitated discussions deeply strengthened by the networks and bonds of a shared vision, but sometimes also feeling distanced and alone as we seek to communicate our vision of living and working and sharing life alongside people with disability. We recognize that this transformation towards making the good things of life available to all, including people with disability, is a part of what India has to offer a world which appears more divided every day. Our purpose within Jhalak is to offer a glimpse of some of the ways that people and organizations across India, have put the elegantly simple, but also paradoxically complex roots of Social Role Valorization to work in transformative ways, even if they are seemingly small steps. We bring them to life through words and images, and invite you to reflect on how small change agentry steps are exceedingly brave and poignant in a world that prefers distance and segregation. Some are practices related to the direct life changes experienced by people with disability and their families, and others are organizational change efforts that are part of a broader transformative effort. Consider it a bit of a curated “clearinghouse” of vision converted to action, of small steps forming the fabric of our movement towards equity, justice, and full, rich, meaningful lives. We encourage you to share and celebrate the work of building this inclusive house. After seeing the glimpses offered, you may consider submitting other action steps you are aware of, to highlight, inspire, and challenge our community. Lastly, we must thank the small but mighty Rajasthani SRV implementation group for forming this idea, for setting us on this path, and for providing a spark from which this small fire grew.
Page | 6
Our Vision
O
ur vision is one where all people, regardless of ability or disability, are valued and contributing members of society. We believe that diverse and welcoming communities experience the gifts of all their members, and that such communities have much to teach us about how to live in harmony together.
Our community of practice stretches across India, and is comprised of activists, people with disabilities, advocates, family members, and those who are allies alongside vulnerable people. We are committed to learning about and using important and high-level idea sets, such as the principles of Social Role Valorization as well as person-centered inclusive practice in education, community life, vocation, home, and relationships. We are also committed to putting those ideas into practice. We work ‘each in collaboration with each’; all are both teachers and learners, and we share what seems to “work” towards our vision freely. All of us are leaders in our commitment to better lives, whether through formal teaching, implementation, powerful role modelling, or sharing through media and writing. Our commitment to create a better world is one thing we share, along with a belief that our thinking frameworks, such as our core framework of SRV, are good guidance on the path towards such worthy work. We invite you to share in the vision, the partnership, the hard work of creating change that brings the good things of life to us all. The work sketched in these glimpses bring to life incremental change actions which we think move the world a fraction closer towards the world we want to create.
Page | 7
Transformation in Service
In the Driver’s Seat Prayatna is a small organization in Pune, Maharashtra, dedicated to supporting adults and children with developmental disability. Founding partners Radiya Gohil and Mridula Das attended the inaugural Social Role Valorization course in 2016 in Delhi, and were struck with the concept of assisting people who have been often overcontrolled and over-protected to maximize their personal autonomy and be “in the driver’s seat” of their lives. They thought, talked, discussed with the people they serve, the families they serve, and the staff, and formulated an idea. Prayatna has a vocational training program which is fairly typical across these sorts of programs. The people served in this program are all adults, and they are assigned work tasks such as paper bag-making, masala preparation, and creation of craft items for exhibition. When Radiya and Mridula began to think about how to increase the opportunities for choice and control, they began to question why such tasks were assigned and controlled by the staff, and whether they could change that. After all, decisions made about the tasks people are involved with define how people’s time is used, and whether people experience a sense of pride in their work. As a result of this exploration, the people they serve formed a “Friday Work Meeting,” essentially a democratic staff meeting in which the workers themselves negotiated and decided which work would be done by whom. You can imagine the room for real competency enhancement here, as the people served learn to negotiate, advocate for their interests, work together, compromise, and lead. In addition, people gain the benefit of having some control over their next work week, and how they will spend their time. As an added unexpected benefit, they noticed that Fridays had often been a day when people decided to stay home from the program. Once the Friday Work Meeting was in place, people realized that their presence was important on Fridays, and attendance went up. After all, if you weren’t at the meeting, you didn’t have control of your time and activity for the following week. This practice is evolving as the role of the workers in managing the meeting continues to increase and the role of staff decreases.
Page | 8
Studying the Ordinary The Ashish Centre, under the founder Geeta Mondol and the current Director, Sheila George, has taken the implementation of both person centered practice and Social Role Valorization forward in a steady arc with one strong strategy after another. Over time, we will cover several of these strategies in more detail, but for this Glimpse, we’ll look at just one. It should be said that Ashish was an early adopter. Their leader attended the inaugural SRV workshop, senior staff have attended, and families and board members have all been exposed to the ideas. One of the biggest struggles in looking at implementation of SRV in services that serve only people with disability is realizing that integration and inclusive practice might be a long-term goal, but current structural realities prevent the realization of this goal at this moment in time. Ashish decided that they wanted to make every possible implementation effort they could, while keeping practical limitations in mind. Although Ashish is a school, they realized that, because it is a special school just for people with disability, it has drifted in some practices from what typical schools for typical students might do. This makes it highly likely or leads to a high likelihood that students will not be prepared for a more inclusive life in the future. They therefore decided that they need to study the ordinary, explore how typical schools operate and function, and adopt what they could into their own school. They accomplished this by “twinning” with a nearby school, and asking all the staff from Ashish to spend some time there in observation. They came back loaded with ideas. Some were big ideas – like grouping students in class by age rather than functioning level or type of disability, and renaming classes according to normative standards. Some were small ideas – like decorating the halls with the kinds of learning messages and decor one might see in a school, rather than messages to the staff and messages about disability. They learned about how much time students spend in their own classrooms vs. out of the classroom, and tried to model that. They noted how the students’ time was maximized in learning tasks, and replicated this by reorganizing class activities to reduce waiting time for students. As an unexpected bonus, the relationship established between the two schools may lead to options and possibilities for some inclusive practices between the schools. This is an excellent example of using the culturally valued analogue (what happens for typical people in the community) as an anchor point, and making adaptations and modifications from there.
Page | 9
The Power of Language One of the areas in which Social Role Valorization sharpens our eyes is noticing the power that language has to convey negative or positive messages about people. Dr Raheemuddhin PK, psychologist and leader at CDMRP within the University of Calicut, attended a four-day intensive SRV workshop and immediately realized that in the many training courses he conducts for professionals, the language was highly medical in nature. He knew the use of such terms might further cause people with disability to be seen as clinical objects, as problems to be treated, and as research subjects rather than full citizens, full human beings, and people who actually represent the breadth of diversity of the human condition. He realized that he could take a first step in implementing aspects of SRV by paying close attention to language and use terms that further citizenship and humanity rather than pathology. We know that changing language may not be the only answer to changing mindsets and attitudes that hurt and harm not only wounded people with disability but all of us. We do know it’s not a bad start. Tomorrow’s professionals, students, and protégés of Dr Raheemuddhin will benefit from his efforts to use a language of respect about and towards people with disability.
Page | 10
Rethinking the IEP Sudha Nair, a special educator and passionate activist from Pune, was struck by the potential of Social Role Valorization back in 2018. She recently attended the four-day deep dive at SRV 3.0 and has put her sharp mind to the task of trying to relate Individualized Education Plans (IEPs) to a meaningful planning process for competency enhancement. She first explored the difference between a document intended to be a roadmap to accomplish goals and a living process that frames a roadmap for a person. She notes that while the IEP may focus on specific learning objectives, it is likely to completely miss the bigger picture of the student moving towards a life of belonging, acceptance, and the best that life has to offer. She discovered that the IEP is often described as a living document, but wisely notes that a process may be alive but a document cannot. How can you breathe life into a document? Her work is deeply tied to figuring this out. How can we uplift such a document to cause good things to come into the life of a student with a disability? For Sudha, the potent idea of valued roles being incorporated into such planning has become the focus of her planning processes with parents, teachers, and students. She has opened minds to the ideas that a goal might have associated skills, but a person has roles, not just skills. That’s just real life, and this simple but important idea has escaped many of us. Sudha writes, “When traditional IEPs are formulated, the focus is on deficiencies and how to overcome them. Yes, we call it objectives and skill development. But this perspective actually narrows the scope of our work to activities. A typical specific objective would be: ‘Will count the number of objects (1-10) and indicate the answer by pointing to the corresponding flashcard on command, independently, 4 out of 5 times.’ Once this goal is achieved, we move onto the next. However, if we are using roles-based planning, the starting point would be the person in his or her community. What is the role the person would mostly likely ease into and fill? Just the addition of two words— ‘valued roles’—makes all the difference.” Sudha is working within her own practice to elevate the IEP to be roles-based, so that instead of focusing on the small sub-skills, she helps teachers and parents to identify roles the student might like to fill—like teacher’s helper or even just the basic role of student, which involves such skills as learning to attend the all-school assembly and learning to distribute items to the rest of the class. Once the role begins to be filled, she can see the growth of some very important elements: Her teacher’s regard and attention A sense of belonging with her peers Increased meaningful participation and interaction with her peers All of this leading to more shared experiences. However, having valued roles as a default setting gives a clear, defined path from the beginning. No hit or miss. The whole rationale shifts from a deficiency model of a checklist of skills to be achieved to a valued person-centred model of planning. Based on an IEP, goals will definitely be achieved, but belonging, acceptance, and respect may or may not be a happy by-product. A person-centred, rolesbased, value-creating program culminates in the good things in life for the people we serve. We are appreciative of Sudha’s role-modelling of the “goals to roles” orientation in her work coaching and facilitating students with disability and their families and teachers. Page | 11
A Unique Life to Live People with disabilities have often been seen and described as “those people” – and segregation and congregation increases the tendency to not only other such people, but to see them as a clump who are much the same as each other. One strategy which is taught within the framework of Social Role Valorization is to individualize services and supports, and that can start with our own mind-sets and the mind-sets of others (another powerful theme of our teaching). Autism Society West Bengal took on this issue of individualization by asking what they can do to assist the staff to see each child they serve as a unique person, different from every other soul, and with unique attributes, potential, characteristics, and even dreams. After all, every time a teacher opens a student file, full of cookie-cutter planning documents and list of deficiencies, they are likely to get reinforced for seeing their students as all the same. With this view in mind, ASWB initiated an important step of change by making a highly individualized, colourful, imageenhancing, creative one-page profile placed prominently on the cover of each student’s file. Now, no one can open young Asma’s file without seeing her as an interesting, unique, valued person at the very first glance. That’s a great way to start out on the right foot, before her file is even opened. The one-page profiles are full of positive characteristics, interesting facts, and a lovely image of the student. The same one-page profile was also introduced in short-term parent-child training courses, where teacher and parent discussed and made the one-page profile together. Families find these to be positive, affirming discussions, and the creation of beautiful representative images to be in themselves uplifting, and understanding that they will go on to inform other teachers and supporters that this is a child worth knowing. Way to go, ASWB! These simple methods have an impact on mind sets and on how children will be treated.
Page | 12
Image Detectives
If you walk into the employment section of Autism Society West Bengal, you won’t hear the workers and trainees referred to as “our children”. You won’t see the walls jam-packed with donation plaques lauding all the generous benefactors, nor see all sorts of autism awareness and diagnostic posters on the walls. These examples are “red lights” that contribute to the people served being seen as forever children, charity burdens, or medical problems which need to be remedied. You will hear families referred to by their proper, respectful names rather than “Tarun’s Mom,” you will see the school section full of the sorts of school-typical décor and positive messages about learning, and the work section with messages you would expect a workplace to have. These are all “green lights” which encourage people to think of those served as full human beings and full fellow citizens. Image enhancement is one of the vehicles through which one can access valued roles in society, and image can be used to put good things into the minds of people about other people. Autism Society West Bengal (ASWB), an impassioned organization working for change, was captivated by this idea as a result of their training in Social Role Valorization, and immediately set about with a metaphorical magnifying glass to check out the image messages around them.
Page | 13
The imagery that surrounds a person with disability has a huge impact on how others will judge them, and, in turn, the juxtaposition of positive imagery positively affects the judgement people will make. Oftentimes, programs for people with disabilities are simply chock-full of imagery that conveys powerful “silent messages” that aren’t so positive. ASWB decided to tackle this issue by conducting a detailed and intensive search in the physical building where ASWB is located. They did so with a mind-set of uncovering any images that might reinforce negative roles such as eternal child, societal burden, clinical objects, or sick. Once uncovered, they would work to remove or mitigate the impact of such images. Some of the changes were small, like the notice board, initially used for instructions to teachers, was replaced with age appropriate visuals for the students, much more normative for a school. The ‘donated by’ plaques which reinforce the negative role of burden of charity, were changed to ‘gifted by’ after convincing donors this was more enhancing. A library was started for the students, in line with a resource you would expect a school to have for the students, reinforcing the idea that the students are learners with great potential for increasing their knowledge. In the past, many of the staff would refer to the adults they worked with as “our kids”. This term was intended to be endearing and affectionate. However, they identified that this very term reinforced the age-degradation that limits expectations that people hold for adults, as well as displaying a sense of ownership that may limit the personal agency. Immersion in SRV study and learning helped the teachers realise that the chronological age needs to be kept in mind whenever they talk to an individual regardless of the severity of disability, and that interaction style should match the age and cultural expectations for typical people. Deciding to take a step-wise approach to SRV implementation, ASWB has taken a good hard look at the image messages in the physical environment. This was an excellent starting place in implementing SRV, impactful, and simply “doable,” even when larger systemic changes seem out of reach at first. The team members at ASWB have transformed into image detectives, and this has made a difference in how the people they serve are seen and treated.
Page | 14
Putting the Developmental Model to Work: New Ways of Teaching and Learning in West Bengal An invisible entity, a tiny virus has changed what we knew as normal. The lockdown in India brought everything to a standstill. The closure of schools and programs sent parents of those with special needs in a tizzy, and it sometimes seems that everything is in jeopardy. No doubt, within a crisis lies possibility and promise, and Autism Society West Bengal decided to use the strong ideas they have been learning to adapt and help students thrive. The Developmental Model, a major theme of Social Role Valorization theory, incorporates a number of broad principles which are likely to result in great learning for all people, including those with disability. This was an opportunity to put some of those ideas into practice. To keep the teaching and learning process afloat, they began by providing online classes. Social stories were written, and visuals were prepared and circulated to all parents. But group teaching online somehow seemed to be missing the mark. The critical element of one-to-one interaction was missing, and they decided to individualize and personalize the approach to each student. Individualization and personalization is one of the hallmarks of a successful developmental approach, and this pushed them to individually design the learning path for each student. A person-centred online approach with video calls was envisioned as a possibility. Individualized Education Plans (IEP) were reviewed and modified, and adapted for new ways to teach and learn, incorporating highly individualized, person-centered methods. Online classes started with the teachers bonding with their students virtually and individually. Fourteen-year-old Dipyaman’s teacher sent the program schedule for the first week, hoping it would be a success. The teacher sang his favourite songs with him and recollected their days in school, and both shared about how they were missing school. The teacher used social stories as he talked about the pandemic and how we all had to change our routines. Then the teacher took Dipyaman on a virtual tour of his village, far away from Dipyaman’s home in Kolkata. Here, Dipyaman’s interest sharpened in amazement at the green open spaces, ponds,
Page | 15
vegetables growing, cows in fields, and coconut trees. Fruits which he loved and saw only on the dinner table were growing in the trees—bananas, lemons, mangos. He saw and learned about bright hibiscus flowers in red, yellow, and pink. Concepts of colour, shapes, animal types were seamlessly woven within these virtual tours. After this, Dipyaman was hooked on using technology to open new doors for learning. Other teachers got involved, designing custom lessons with his favourite activities, incorporating occupational therapy goals seamlessly and in ways which appealed to him. Dipyaman then joined group classes, and he was delighted to see his friends on screen. Keeping in mind the need for high levels of individualization, just four students connected in each class using WhatsApp as a platform. Family meetings were also arranged in a regular basis using Google Meet, and the students seemed reassured to see parents talking and laughing together. Families could share stories of all the unexpected achievements of their sons and daughters, and share ways to support the learning process. So this “new normal” has turned out to be better than the “old normal” in terms of Dipyaman enjoying his online learning, and it brought in a level of individualization which could never be achieved otherwise. Dipyaman is truly thriving in this individualized set-up, and has a knack for technology no one knew about. During the one-on-one class, he was in control of his lesson and was not distracted readily. Later when he became a veteran during one-on-one classes, he was introduced to group classes starting with just two or three students. Everything seemed to have fallen in place. The lockdown in the times of Covid-19 showed us not only can individuals with autism adapt to change, they can also make considerable progress. However, the necessary material supports and accommodations needed to be in place, and our mindsets as teachers must embrace the possibilities of person-centeredness. During these desperate situations in the times of Covid-19, this was an eye-opener. The high expectations demanded by the developmental approach were met and exceeded by the students of Autism Society West Bengal. Maybe it is just another example of the indomitable human spirit.
Page | 16
Nipping Away at Devaluation Devaluation can occur in subtle ways, and sometimes unknowingly. We usually mean well, and work at ways intending to be valuing and uplifting. However, when our “SRV lenses are on”, we realise that sometimes those measures in themselves can be harmful in how they cause people with disabilities to be perceived. Dr Fahmida Islam of Chittagong, Bangladesh, a physician, activist, and mom of a son with autism, left a four day course on Social Role Valorization with a sense of urgency to do something to ease the wounding she saw impacting people around her. It seemed overwhelming – she realised this as soon as she returned from her SRV training and tried to make a plan for how to begin. As Founder and Director of Foundation for Autism Research and Education (FARE), she felt an obligation to act, and recalled the words of the SRV experts – “Don’t let what you CAN’T do get in the way of what you CAN do”. One piece of powerful learning for Dr Fahmida was how the labels that are placed on a person with disability can come to take over the identity of the person. Those labels can be helpful in terms of helping people access certain services that can help. However, in the minds of many people, a child with autism may become actually seen as autism itself (the condition) rather than a full human being, a student, a son, a valued contributor to society, a citizen. This bothered Dr Fahmida, and she and her team wondered how they might lessen the impact of this constant labelling and categorizing of the students they serve at FARE as “autistic”. They noticed that the van in which the children rode into school every day was emblazoned with the name of the school on the side - pretty typical across Bangladesh. However, the name of the school is Spectra School of Autism. With her new lenses, she realized that it was not necessary or even helpful that this label followed the students everyday as they travelled to school, reinforcing the notion in thousands of passer-by’s minds that the most important thing about the people on that van is autism. Dr Fahmida and her leadership team realized that this was one small way to nip at the heels of overly labelling their students. They have renamed the school “Spectra School”, leaving out the unnecessary label – this means there is a little bit more space for people to see these young people in more valued ways. They are not trying to deny the disability, just put it in perspective as one characteristic about a person, not the defining characteristic. Slowly, taking small steps to keep chipping away at devaluation is imperative, as is not getting overwhelmed by the enormity of the journey that lies before us in combatting devaluation. For that we need to have eyes that are SRV savvy and take small steps in translating SRV thinking to SRV doing. Dr Fahmida and the small but strong team of SRV practitioners in Bangladesh have them, and that does make a difference. Page | 17
Transformation in the Lives of People with Disability
Heavy Hitter Roles Mr Shrutarshi Banerjee lives in Kolkata, and if you are lucky enough to meet him, he will be introduced as an entrepreneur, a manager, and a business partner. His life has changed so much from the days of pre-vocational class engagement that were not leading toward employment or other valued roles. Several of his supporters, including his family, were exposed to the ideas of inclusive practice and valued roles through workshops and collaborations in West Bengal, and Amrita Roy Chowdhury was a notable early-adopter in West Bengal and across India. She wanted to have the experience of helping a few people move into valued social roles, and see the impact on the larger business community. Change-agentry on the individual and the societal scale are Amrita’s passion. Shrutarshi began his entrepreneurial career as one of three partners starting up a small-scale catering business known as Sip n Bite, with a few customers and some excellent experience. Mr Banerjee is a person many people would quickly judge as not able to work, but his support team was determined to help people see his potential, and see him succeed. He is now a partner in a sidewalk café business located on a classic corner crossing in Kolkata, serving a lovely breakfast al fresco. Mr Banerjee handles the business side of things by taking the orders, collecting the money, and making change. His business has been written up in many media formats, and is a part of the leading edge, up-and-coming business trends in booming Kolkata. At the same time, he shatters myths and stereotypes about people with autism, and does his family proud. Amrita and her team understand from their exposure to Social Role Valorization the importance of highlighting the most valuable aspects of a role, while making sure the person also is authentically in the role. This understanding that people may need invisible support to more fully fill the role is an important SRV implementation concept. The transformation in Mr Banerjee’s life serves as a testimony to the importance of valued roles, and the potential to create valued space for everyone at the community table. Page | 18
On Ownership When Bhawna and Rosy left the shelter home, they owned nothing – not a stitch of clothing, a photograph, or a memento to tell their story, to hold their history, and ground them. Those who assisted these young women to leave that shelter home in the north of India and move to a typical home in a village understood the importance of having personal possessions. They are a form of asset, not only a financial asset but an identity asset. One of the wounds often inflicted on marginalized people is that they experience grinding poverty – material as well as financial. The team who supported Bhawna and Rosy understood this well, and has worked to assist each young woman to develop her own personal possessions. Rosy and Bhawna are wonderful hostesses, and when they welcome you to their home, they are so anxious to show you their bedrooms, their almirahs and, specifically, the things that they own now that they have had a fresh start. One of the reasons institutionalized people often have few possessions is that they are often stolen or create problems between people living in the institution. One of the important reassurances that Bhawna and Rosy have is that their space is theirs alone, their possessions are theirs alone, and they will be safeguarded and protected. In SRV training, we think of the many wounds experienced by marginalized people as bricks on the backs of already vulnerable people. As a response, we recommend that people find ways to prevent, reduce, and compensate. Helping both these young women develop personal possessions that express them, define them, and give them deep joy and pride is one way to take bricks off.
Page | 19
A Vision with a Plan In the city of Bengaluru, the families and leaders of Bubbles Centre and Pragati joined together to empower families to engage powerful, inclusive, person centered tools to help imagine and move towards positive and possible futures for the students and young adults they serve. Within their method, a group of families joined hands to learn to facilitate the PATH process as well as Personal Futures Planning. Over 20 such processes have been led by parent facilitators to work towards full futures for 20 individual children and adults, ranging in age from 5-35. As a result, young Maaya has gathered with over 20 family members, friends, teachers and neighbours to create an inclusive future. Arvind explored and developed a passion for care and healing of the earth through sustainable farming and water saving techniques, and Aditya sketched his desired future out, leading to his first experience in independent living in his own place. PATH is a wonderful way to create a vision of valued roles, and works so well when laid upon a foundation of Social Role Valorization.
Page | 20
’Tis People that Matter Kiran, a young woman with developmental disabilities, lived in a congregated, segregated institution under terrible conditions for many years, as both a child and an adult. Moving to a typical home with 3 other women was a big change in her life, and she had no friends or relatives to welcome her there, except for the staff who are working with her and the women she moved in with. As we all know in SRV, there is a tendency for natural relationships, if a vulnerable person has any at all, to be replaced by paid relationships in the form of paid workers. In Kiran’s situation, we realized soon after her move that she was surrounded by people who were paid to be in her life, or who were volunteers for her service organization. They are caring, committed, and dedicated staff, but one cannot forget that they are, indeed, paid workers, and people need more than just paid or volunteer workers in their lives. SRV theory highlights the lack of freely-given relationships as a nearly universal “wound” experienced by so many vulnerable and devalued people. The team began to wonder, where might young women be found who are about Kiran’s age in the town where she lives who might be excellent possible friends? Well, look and you’ll often find. A Community College sits quite close to the place where Kiran works, full of twenty something young women who are interested in many of the same things Kiran is, and might be interested in knowing her. With a few careful introductions, Kiran was quickly included in several friendships with students at the community college. As we know from the SRV theme of “Personal Social Integration,” relationships with valued people in the community are important for many reasons. The relationships that Kiran is building with the college students have good chances of benefitting Kiran herself, her close social circles, and the community at large, for many reasons proven by empirical research but also in concert with the values ascribed to by our major civic and religious traditions. And for Kiran, we now need to support her to hold on to, and get stronger in this valued role of friend, to be one step closer towards attaining a full, rich, and meaningful life within her community.
Page | 21
The Real Thing Samarpan always wanted a job. He wanted to travel to work, get paid, and work just like any other young person his age. However, studying in a special school, he was constantly protected, and taught skills in “pretend situations,” so for him, real work had not been a real consideration. And then came the introduction to SRV. A personal futures plan was developed alongside Samarpan, in which he expressed his desire to work at a real job. At the same time, the organization that supports Samarpan, Ashish Centre, was exploring SRV implementation, and had learned about some important aspects of skills teaching relating to helping learners develop real skills. Soon, Ashish Centre was approached by a company who said they wanted to hire people with disabilities for e-commerce operation. They were excited about guiding Ashish to develop a special area in their building that looked just like their materials handling room, so that Samarpan and others could “train up,” and when they were ready, move into the real work setting and the real job. Sounds great, right? Except that SRV had taught us differently, and we gently negotiated on this point, and asked that Samarpan and any others interested in applying learn and train on the job, in the real workplace. So, Samarpan went to his new place of work, and learned the skills he needed for his job, on the job. His supervisors were very helpful and Samarpan learned about his job, on the job, from his peers and supervisors. There was no transfer of skills required from one setting to another and he stepped into the valued role of staff in a manner which was similar to any person in a new job. Now the Ashish Centre has assisted several other people with autism to work with the company, with two of them already promoted to supervisory positions. As firm believers of ‘pedagogical verisimilitude,’ Ashish has moved away from creating pretend situations. They learn the skills they need in local businesses and restaurants, using real public transportation to navigate in the society by being in society. As a professional working with those with disabilities, I often come across situations where schools create ‘mock’ situations to teach skills to people with disabilities. We might find pretend shops, pretend workplaces, and even pretend restaurants located in the school itself. Social Role Valorization approaches the idea of competency enhancement with a developmental approach, and one aspect is that people learn best when they are taught in the environment where the behaviour is expected to be carried out. In fact, when one learns in the “fake” environments, one is simply less likely to generalize successfully. Dr Wolfensberger coined the term “pedagogic verisimilitude,” meaning that teaching is most likely to be successful when the tasks are real, not fake “mock-ups,” and when they are taught in the natural, real environment. Simply speaking, it means teaching skills in an environment which is as close to the natural situation as possible, and using real materials, not representational ones. For Samarpan, as well as many stakeholders in the process of trying to use SRV, it was a timely connection of the right idea…. coming at the right time…. with the right people listening. Page | 22
Bending Over Backward to Strengthen a Role
Person-Centered Planning can be a powerful method to help envision all sorts of valued roles a person might move into. Autism Society West Bengal gave their organization a powerful boost when they combined their SRV savvy with a tool like PATH to give a roles-based vision. Mr Amitava Basu took center stage at his PATH planning session, surrounded by the people he most trusts and regards. When he began to talk about how important his role is as a classroom assistant at the Lake Gardens unit of ASWB, his circle members listened. They began to think about ways he might fill the role of school employee more fully. STRENGTHENING existing valued roles is one of the important parts of SRV theory, and the people in Amitava’s circle understood this, and used this idea in supporting him. One way to strengthen Amitava’s role was to help him take on more valued activities in that role. Amitava is a natural public speaker and a man who loves to be in the center of things. He decided he would like to be a part of the orientation team at his school, providing training presentations at the parent training sessions. Not only does this strengthen his current role, but it is also a very fine example of the conservatism corollary (bending over backward to compensate) in practice. After all, being a part of the new batch of parent training means you are automatically respected and listened to as a mentor. As Amitava teaches about school-wide policies and procedures, he is also perceived as an expert on the subject, an added bonus to all the “good things of life” coming his way.
Page | 23
Magic@Work Sitting in the first SRV workshop was like looking into a mirror for Elizabeth Albuquerque (Liz). “... my belief system, of how every human being deserves respect, dignity and a purpose in life .... was right there staring back at me.” Creating meaningful and valuable social roles for each person is the basis of a happy, productive individual, leading to a happier and more productive community. It was important for Liz, to facilitate Alyx, her daughter, into making a difference, however small, by being a contributor in the community, a giver rather than being a taker at all times. But where does one begin? While belief is important, where does the action begin and how. Firstly, a PATH (Planning Alternatives for Tomorrow with Hope) was conducted. When the PATH for Alyx was being done, what stood out was the vision that the people saw in that PATH were Alyx’s choices, her dreams, her ambitions, her interests, and her friends and supporters. For the first time she was at the center of her life’s choices and goals. Conservatism Corollary tells us that we need to prevent wounds, reduce them and compensate for them by bending over backwards. So the PATH that Alyx chose for herself was more unconventional and highly valued (more to the right of the bell curve). The first thing that was done was to ensure that there were no more wounds. No more treating her as an eternal child. She was to be firmly in the driver’s seat, deciding for herself. Then came the part of her being made strong in the valued roles she already had, and having strong heavy hitter roles she wanted to make her a contributor in the community. This gave birth to Pumpkin Patch–Magic@work. Alyx is the owner and creative director of it. She is very much in the role of an entrepreneur. When you visit the pumpkin patch, Alyx is the one who takes you around, shows you the place and takes pride in all that she has accomplished. She has support, but she is definitely in the driving seat. While she does have some support it is gently in the background, supporting and undergirding her. “SRV and PATH were brought into our lives at a time when we were looking for focus and direction in Alyx’s life. And therein was the birth of Pumpkin Patch—Magic@work,” said Elizabeth Albuquerque.
Page | 24
Finding the Fit Helping people, especially young people, find their place in this world is affirming work. For many people, including people with disabilities, finding out what is “a fit” requires having lots of experiences, stretching a bit, and experimentation to see what brings out the best in us. Mohammed has always stood out to his family and friends as a unique teenager who has big ideas about his future. When the pandemic struck, the centre which he attends each day in Bengaluru switched from hands-on, face-to-face support to online classes and online activities. He was not interested in this, and those who know him well could see this. However, the onset of the pandemic opened up new possibilities for him. He shifted with his family to their farmhouse in Hyderabad, where he may well have discovered his niche. As the lockdown started due to COVID, his family moved to a small farm near Hyderabad to avoid being cooped up in the apartment in Bengaluru. And Mohammed almost immediately found his place at the farm in a surprising fit. He adapted well to the farm schedule, enjoyed the open spaces and exploring new areas of his choice. Mohammed enjoys the hard work of the farm such as planting, and taking care of the goats, which he enjoys with clear delight. We can suddenly envision him as he grows into adulthood moving into the role of a farmer, specializing in animal husbandry, perhaps even specializing in the growing Indian concern of raising animals and growing food which is organic and healthy. Fatima, his mom, notes that seeing Mohammed as such a natural has increased her own expectations for his future. She says, “Seeing Mohammed at the farm has given me insights into his abilities and things we need to work on”. They imagine that this family farm is Mohammed’s legacy – they can envision him inheriting this farm as an adult. Fatima and her husband have found themselves referring to the farm as “Mohammad’s Farm” and he is likely to be the future owner of it. Mohammad has a sense of belonging and his image and competency was boosted, which has helped open up more roles for him. This move of the family has been so successful, even as the family realises the joys of minimalism and blossoming of Mohammed, they are seriously contemplating moving to the farm permanently. So Mohammed appears to be moving toward the role of a farm owner, and this has had a cascading effect with several other roles coming flowing from it, e.g. animal lover, worker, farmer, nature lover and so many more. We wish Mohammed well, and are so pleased to hear about the directions his life is taking, and how, even in the midst of adversity, his life is opening up, and he is growing into it. The concept of Model Coherency, as introduced in Social Role Valorization principles, is partly about finding the right fit - the right person in the right place in the right manner. It is likely that Mohammed’s life in the metropolis of Bengaluru may never have exposed him to such a complementary experience. In this way, the pandemic has brought a life-changing opportunity into his life that no one could have predicted. Mohammed’s experience living on the farm in some new valued roles makes it clear that when that fit starts to happen, possibilities open up. Page | 25
Discovering and Exploring Identity Mr Arvind Sekar is the sort of person who reveals himself only over time. About a year ago, his circle of support – a group of people who care about Arvind and his future, spent some time helping him to think about what the future might hold for him. After holding down a number of short-term jobs, Arvind was back in a job-readiness program, where he has spent a good part of his life. Making items for sale did not seem to much interest him, the hospitality industry was not a fit, and an internship at Café Coffee Day seemed to engender little excitement. When the discussion turned to caring for the land, Arvind’s entire face lit up and he began speaking with such animation about caring for the earth, about farming practices which make careful use of water and soil, and about preserving elements of the soil and caring for plants. The circle came alive with ideas for roles Arvind might fill in environmental advocacy, positive farming techniques, protection of the earth, and working for a good cause. One of the circle members knew of an initiative in Tamil Nadu, far from the city of Bengaluru where Arvind hails from. In the rural area of Villipuram district is a small farm on which people gather who share Arvind’s passion for the land. In fact, there is a tight knit community of people who live and work on the farm, and bind themselves together with great care helping to heal the land, and work with natural methods to bring it back to health. An intentional community, those who engage on the farm are from all walks of life, some come from far lands and even far nations to contribute to the effort. A part of this place is about the land, but just as much of it is about the community of people trying to live in harmony with both the land and each other. The world opened up a bit for Arvind on the day that he and his committed parents travelled by car to cross the country to see this place. They were warmly welcomed by the community members, and had a chance to experience a taste of the labours of care which happen there, and saw a very different sort of life that people were living. Arvind returned to Bengaluru the same man, slightly but noticeably shifted in some way. Having a powerful experience like this enabled him to see the potential for his engagement in life to be bigger, more somehow. He walks a little taller having had this experience. His loving and committed parents also see him with a fresh perspective, having travelled with him, seen him in a radically different environment, and envisioned him branching out in his interests. Who knows where Arvind’s life path will lead him, but he continues on it a bit stronger and surer having had this opportunity. New experiences make expand our world, help us discover who we are, and open up our futures. They also give us fresh eyes to view the world and each other. Page | 26
Creating Legacy and Making Our Mark Bhawna’s life is full of interesting people, places, and activities, and she is a woman hungry to experience all that life has to offer. After years of having a small, restricted life, she is living in a community in which she can stretch herself, and even grow into herself. The team who supports her understand how the skills that Bhawna learns tie closely to allowing her to fill important roles in her community. They also know that keeping a close eye on Bhawna’s interests and natural gifts help them understand the direction her life is heading. When they first met Bhawna, a year ago, they noticed that she loved to get a hold of the mobile phones that belonged to other people and look through their photos. Sometimes, she was reluctant to return them. They realized, far from this being a problem, Bhawna also wants to capture her own life, and friends and events, creating a legacy and a record of her place in the world. They helped her to obtain a digital camera and learn to use it. Now, she is developing the skills to print the photographs that mark her important presence in the world, the rich experiences she is having, and the people who are accompanying her in her life. Everyone wants to leave a mark on the world in some way, to leave a legacy that says our life matters and we each matter. Bhawna teaches us this every day, as she becomes an amateur photographer who captures moments that matter.
Page | 27
Acknowledgements
Keystone Institute India thanks all who contributed to this effort through sharing their powerful stories and images: Ms. Alyx Albuquerque Mr. Amitava Basu Ms. Amrita Roy Choudhary and the team at Sip-n-bite Mr. Arvind Sekhar Ashish Foundation Autism Society West Bengal Ms. Bhawna Biswa Gowri Trust Dipyaman Dr Fahmida Islam FARE Bangladesh Mrs. Elizabeth (Liz) Albuquerque Mrs. Fatima Sheikh Mrs. Indrani Basu Ms. Kiran Dr Mitu De Mr. Mohammed Syed Ali Mr. P.K. Raheemuddhin Pragati for Livelihood Prayatna – for people with special needs, Pune Ms. Rosy Mr. Samarpan Mondol Mr. Shrutarshi Banerjee Ms. Sudha Nair Pumpkin Patch Design Studio Rural India Supporting Trust The Hans Foundation Page | 28