About Keystone Inst I tute Ind IA
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
foreword by Ex E cutiv E Dir E ctor - ri St
We often say that walking a mile in someone else’s shoes is the best way to really understand who they are and how they see the world. In essence, experiencing a glimpse of what their journey through life entails. Jhalak (a glimpse) gives us that opportunity. I was honored to be asked to contribute to this volume of Jhalak for two main reasons: First, I am so proud to have been one of the fortunate few to work on the establishment of Keystone Institute India (KII). KII plays an instrumental role in advocating for equity and inclusion of all people who are living with a disability in India. The approach taken by KII is one of pure empathy. The ability to truly understand someone else, see the world through their perspective and have an emotional stake in their wellbeing is not an easy thing to do. It’s agreed, that empathy does not equate to having the same experiences as another person, but it is an important step to advocating and ensuring equity for them. Empathy alone is not enough, however. The second, but equally as important reason, for me being so happy to contribute to this volume of Jhalak, stems from the word “inclusion.” Over the last 5 years or so, my connection to KII has allowed me to learn so much about what inclusion means. Every aspect of life must be one where there is no line between those with and without disability. The word inclusion does not specifically have a direct tie to disability, but in this case can illustrate how if we, as human beings, can make inclusion a priority, so many other divisive issues within our society can be eradicated. Instead of highlighting why someone can’t do something, they are empowered internally and externally to understand nothing but equity. Just think about the possibilities!
So, since we are now thinking about the possibilities, let’s reflect back to a time, not too long ago, when so many were convinced that people with mental health issues and other disabilities needed to be locked up and put into large-scale institutions. Exclusion from society was a real answer to the “problem.” KII, as well as a number of likeminded people and organizations have been on the forefront of not only dispelling the theory that people with disabilities are a “problem,” but have been actively transitioning people from exclusion to inclusion and the results are absolutely amazing!
This volume of Jhalak will lead you on a journey that is teeming with exciting stories of those people and organizations that are changing the perception of how we think about people with disabilities. These leaders are breaking barriers, reducing stigmas and just plain doing the right thing when it comes to ensuring an inclusive and equitable future for those with disabilities in India. I hope that you all are as grateful for their existence as I am after reading through this volume of Jhalak, and desire more than just a glimpse into this movement… sparking your involvement in taking things further than we ever could have imagined!
Paul Glick Executive Director Rural India Supporting Trust
letter from t he e d I to R
December 2021
Dear Colleagues, Friends, and Fellow Change Agents across India,
A Glimpse is a snapshot of what is definitive and what is possible, bringing a shining ray of hope and optimism for people with disabilities and their families. Keystone Institute India’s commitment to share ideas that can positively impact services and supports for people with disabilities began in 2015 and continues today with a growing network across India that strives to hold up a mirror to how change agents across India are working in concrete ways to transform ideas into action. These actions elevate the position of people with disabilities across India and also enrich individual lives.
This is the second edition of Jhalak. A rich repository of prose and images that demonstrates glimpses of seemingly simple yet powerful stories in the lives of people with disabilities that can pave the way toward meaningful and positive change. Social Role Valorization, Person centered thinking and planning, and other powerful change ideas shared through workshops in the past few years have shined a light on emerging leaders and partners, expanding the growing leadership network of change agentry across the country. And this change agentry is made visible through these Glimpses.
We believe that we need to be the change we want to see in the world. And every Glimpse you read in this edition showcases that change toward a better world where every single individual is honored, valued, and embraced. It is our vision that the welfare of all people is vested in the welfare of each individual, and it is on this tireless journey that we tread step by step, with great care and determination.
Welcome to Volume 2 of Jhalak – a treatise of love, accomplishment, and inspiration.
With warm regards and abiding hope,
Leela Raj
Int Rodu C t I on
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 have 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.
This second volume of Jhalak brings to bear the hope and promise that each little step towards change brings. Change in the personal lives of people with disabilities, change in services, change in service providers, change that can touch everyone and herald a world that recognizes and values each and everyone. We offer this with gratitude and hope for many more to come.
We remember and thank the small but mighty Rajasthani SRV implementation group for forming this idea, for setting us on this path, and for igniting a spark from which this small fire continues to grow.
Our 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.
the small beauties
m At I on I n the lIV es of Peo P le w I th dI sA b I l I ty
Across India, small, community-based supportive services for people with developmental disability are rising out of the imaginations of families and activists. These days, such sorts of services are often fuelled by the desire to create human-scale alternatives to large institutional settings.
With this, comes a need to create a respected profession for the paid staff who work directly with people. Often, we focus on what such people can and should GIVE to those they support. A number of support staff who work closely by the side of people with significant disability recently shared some insights into how the work they do has benefitted THEM – how they have grown and shifted as a result of standing by, with, and for people with disabilities.
Recent conversations with a number of support staff at Vidya Sagar in Chennai, Action for Autism in Delhi, Community Lives in Uttarakhand, and KPAMRC in Bengaluru yielded some potent reflections on what has been gained from the role.
These can be considered small beauties – seldom-considered gifts that people with disability bring to those who serve them and walk with them.
…Earlier I used to think that the women are sick, and the behaviour would decrease with medicine therapy, but now realise that when they live like ordinary people then change can come and has come
…Has helped me to be more creative
…I realised that sometimes my body language or tone of voice was not correct, so I am working on changing that
…I have learnt tolerance now
…I have met some of my best friends through this work
…I know my community better
…My spirituality has deepened
…I have more fun and enjoyment
…Our thinking regarding the women has changed
…I’ve learnt how to do new things
…I’ve learnt how to talk to others respectfully
…I know now that all work can be done even if it takes a little more time
…I have learnt to control myself. Earlier I used to get truly angry
…Earlier I had not heard the word disabled. Now I have tried to change myself, changed my thoughts. I have learnt to be humble, and have love for the women
…I have learnt to fulfil a support staff role
family focus
Efforts to help people with disability to fully contribute their gifts, as well as to lead full, expansive lives requires more than hoping, wishing, and half-hearted efforts. In fact, much of the work of elevating the status of marginalized people goes against the grain of societal devaluation, and so it stands to reason that many good efforts are crushed early and decisively. The best efforts can be thwarted easily by circumstances, mind-sets, and disappointments. For this reason, our efforts to help elevate people’s lives must be made consistently, thoughtfully, pointedly, with focus, steadily, and often over time. The below story, of loss and regaining of family illustrates this so powerfully.
For many people, separation from families becomes a life-defining loss, a grief that comes to reside deeply within. A sense of being adrift, unmoored, and unrooted may be metaphors for how this loss is experienced. For Kiran, whose loss of family happened early in her life, this seems to have been her experience. While in the institutional setting, where she remained for years, it was simply known as a fact that she had a sister, but no details were known, an assumption that followed her over the years. In fact, her records stated that there was no reasonable hope of reunification or contact.
After re-establishing herself as a neighbour in a small community, those who were supporting her began to explore whether she might not have remaining family who could in fact be located. They did not stop there – they began to ask, to look, to actively seek such connections. It was not long before
someone…. who knew someone…. who knew someone else… was able to locate the region where her sister was reputed to live. It was many hours of travel away, and Kiran’s sister had no telephone.
But they did not stop there. They located the local shop close to where Kiran’s sister lived. They found that she sometimes used the shop’s phone. They got a message to her.
They connected and were told her sister would not be able to come to visit because the travel was long.
But they did not stop there. They made sure Kiran and her sister were able to talk periodically on the phone, building their relationship.
But they did not stop there. They arranged for a video call so they could see each other for the first time in many years.
But they did not stop there. They organized transportation. Until finally, a reunion happened, as 8 of Kiran’s relatives re-entered her life with great joy. Kiran seems bigger somehow, more sure of herself, more rooted, and some of that at least can be attributed to her knowing “her people”.
This reunion is instructive in many ways, but what is standing out right now is how efforts to assist people with disability to have strong connections, and full, rich lives require real focus. The team who supports Kiran did not rely on rumour and assumption. They explored and investigated. They did not give up. Their detective work spanned months of thinking through next steps. Disappointments were met, acknowledged, and the goal was again placed on the horizon. New efforts were made; different directions were explored. That FOCUS was required to bring a result that matters. This resolve and even stubborn refusal to accept assumptions, to move on to easier tasks, and not to give up bore such important fruit in Kiran’s life. A lot of people are richer for it.
A Place at the Citizenship table
Aratrik is a nineteen plus, almost twenty-touching young man. If you took a peek at his official records, including his government disability certificate, it would tell the story of a young man with significant and even so-called ‘catastrophic’ disability. Yet meet this man, and you quickly see he is much more than a label. In fact, his parents and those around him see him as a man full of ideas, comprehension, and opinion. He feels deeply and strongly about the world around him, and as he approached the age of majority, his parents realised that his franchisement was an important part of his entering the world and exercising his right to have a voice in leadership of his country, afforded to those of us lucky enough to live in the world’s biggest democracy. Indeed, the right to vote is an important passage in our journey to full citizenship.
Aratrik entered the valued role of voter this past year, after a concerted effort to help support him in undertaking some rich learning about his role as a citizen, including learning about candidates and making his own decisions.
His mom and dad, noted disability activists Bratati and Malay, had helped him make many decisions and choices over the years, and he was well able to express his preferences. They assisted and prepared Aratrik by exposing him to the many YouTube instructional videos for voters and candidate guides.
Bratati and Malay expressed that when they do not fully understand their son, it is their disability, not his, so they listened carefully and more deeply. This was their method in preparing young Aratrik to vote, and when the day came, he was ready. He had been making choices since a young child, and his parents considered this part of his preparation for life – indeed, the day when he entered the valued citizenship role of voter, it was the culmination of years of preparation for the responsibilities of adulthood.
In the days before the election, cardboard replicas of the Electronic Voting Machines were created (EVMs) so Aratrik would need minimal support and know what to expect, and they focused on following the newspaper accounts on candidates, and watched
carefully for his reactions and decision. Aratrik choose his favourite symbol and practiced at least ten times in the last three days and chose a single symbol in the true election without any comment or help from any of those supporting him. He proved he has his own opinion; he should be given the opportunity to express it.
When the day came, the family travelled to the polling place together, ready and well prepared, and full of anticipation. They appreciated all the bending over backwards by election officials in making sure Aratrik and other people with disability, get to exercise their right to vote. This included home visits for registration, accommodations for people in line at the voting places so long lines, frustrating and hard to tolerate for some with autism and other developmental disability, were avoided. People with disability, or at least Aratrik, were welcomed fully to take his place at the table of citizenship.
His mom, Bratati, was with him, but went alone in the voting enclosure, she was touching him at a distance from behind. He completed the whole process just like every other normal person.
This day didn’t come just by chance. It is the result of the combined efforts of many people, and it shows that, yes, legal accommodations are needed and valued. But such accommodations must be accompanied by real people, such as those election commission staff who reached out and made the accommodation work in the way they Aratrik and his family would FEEL the welcome! As well, people like Bratati and Malay who made sure their son was well-prepared.
Most importantly, Aratrik crossing the threshold into citizenship was the culmination of the efforts people who did not believe that his disability defined him and excluded him from regular life and a place at the table. A victory for Aramik, his family and his supporters in creating an India where everyone has a say.
singing beyond the Choir
Dr. Rita James and Dr. Neelam Sodhi believe that working towards equity and justice for people with disability in India must extend beyond family members and professionals in the field. Each of them work within organizations to make change, and Asha Kiran School in Bengaluru as well as Ashirwad in Ludhiana are fine examples of families and professionals working hand-inhand for change. But change must come from all people, as we tune-in together on creating space for everyone.
It takes a certain kind of bravery to reach into unknown territory, to the parts of society that have sometimes worked against rather than for the well-being of persons with disability. Recognizing that the words of physicians carry great weight, and that those words may be delivered to families in ways that set the trajectory for a strong full life or may reinforce the stereotype of low expectations, drove Rita and Neelam’s decision to gather with physicians and activists together to carve out areas of agreement and common concern.
24 people gathered in a zoom room with some trepidation – medical students, neurologists, orthopaedic surgeons, dentists, psychiatrists –all together with Neelam and Rita to talk about what doctors can do to bridge the gap between the way things are and they way they could be. As the discussion warmed up, it became clear that this was not a group vested in pathologizing disability, but instead, 21 interested, engaged citizens who also want better for people with disability. Together, they were able to pinpoint and express so many problems with the way people with disability are treated by the medical profession. They also had a surprising handle on better ways, including sensitizing medical students early on in their training. Their work in a little over an hour may bear fruit in their own medical practice, and impact people with disability and their families.
On the other hand, perhaps the biggest learning was that families and advocates can step beyond the safe boundaries of keeping the conversation within the echo chamber of our own social and professional circles. It was a simple act of courage to take the message outside our comfort zone and then find that many people in the world are open in word and deed toward creating a welcoming world for people with disability from the first moments of life. Physicians have a unique role in helping or harming, and Rita and Neelam learned that at least THIS group, at least, is invested in helping.
moving forward
“We weren’t exactly sure where we were going but we were moving”
Ms. Suganthi Murali, Maaya’s Mom
Maaya is a young woman of 17 years. Like most other young people, she has big dreams, hopes and desires for her future. Her family had been told early and often that, because she has Down syndrome, little could be expected for her and of her. Suganthi, Maaya’s mom, says the low expectations were reinforced by many professionals, who often focused on what she will not do, will not be, and will not have in her life. Maaya has, every step of the way, proven otherwise as she reaches out to make her mark on the world.
A quick study of human behaviour shows us that we step into the expectations that others hold of us. It is no different for Maaya. Her family and friends surrounded her with love and support for all her creative ideas, and she in turn proved a role model for others around her.
As she was just approaching the edge of adulthood, Maaya and her family took some time together to envision a bright future where Maaya’s growth would continue, and she would be fully able to offer her many gifts. We used a tool of Person-Centred Planning, known as PATH. A simple but engaging planning process, PATH shifts the conversation away from deficit-based thinking and towards to the focus person, in this case Maaya. In this unique process, Maaya, with supportive help from a circle of friends, neighbours, and family, crafted a desired future, and that picture came to vivid life when those who love her added their own details of a North Star vision. This experience had consequences, and, her mom says, it was a powerful jumpstart that kept things moving. This gathering and visioning was a catalyst that shook the
family to the core and helped them revise all they expected and wanted for Maaya.
Maaya took the lead in the process, bearing witness to the capacity of people to rise to the occasion, and guide us towards her future. Circle members were astonished to see Maaya’s leadership and confidence come through.
PATH was timely and a powerful medium for Maaya to guide her supporters and shape her future. Maaya became assertive about what she wanted in life. She was ready to take on the world and take ownership of her life, for she was no different from other typical teenagers chasing their dreams. Exploring every opportunity that presented itself, she intensified her engagement in acting and theatre, and began to increase her closeness with the local teenage “girl gang”. Aspiring to be a chef, a choreographer, a fashion designer, or a graphic designer, she has set about equipping herself with skills needed to achieve these goals.
Many new adventures and experiences have filled her life, and with these many experiences come an array of choices. She knows now that she deserves to have what other young people around her have. She no longer looks on as others live full lives, but has seized the moment to jump in, immerse herself, and engage fully.
And as her PATH affirms, Maaya is standing on the edge of a bright and wondrous future. The courage and the confidence of her and those who love her deeply to step into that future gives us all the nudge we might need to step towards our own future.
theory Comes Alive
Valued social roles often lead to very good things in life – important things like belonging, freedom, a decent reputation, and a positive self-image. This is theory –simple facts that might be very useful when supporting people with disability to live full lives.
But when these ideas take root in the lives of real people trying to live their best lives, theory comes alive and holds deep meaning for those impacted.
Today, we reflect on and honour Bhawna, who moved out of a government institution after being held there for a decade – this is 3650 days of her one and only life to live. This is 87,600 hours of her precious time. 52,56,000 minutes waiting for a second chance to take her place in the community.
Nearly two years later, living in a regular home in a regular neighbourhood, Bhawna leaves no stone unturned in her experiencing everything community has to offer. Literally diving in, as she did the first time she was exposed to a swimming pool since she was a small child living by a riverside in an unknown part of India. She has put her whole self into learning new skills, like using the computer, using a sewing machine to make beautiful things, cooking all sorts of delicious foods, and entertaining visitors in her home. She celebrates with gusto at weddings and community events, and has experienced deep frustration at the restrictions on community life that pandemic times have caused.
Work has been an area of exploration – Bhawna has her own clothes for the first time in many, many years. She wants to earn real money to buy the things that she wants and participate in the local economy. She has explored different role options while being supported by others to experiment – to “test” her gifts, to “uncover” her interests. Stitching, design, cooking, making handcrafts were all explored, but did not fully fit. Bhawna wants to
BE with people – a naturally social person, she yearns to be with everyday people from the community. She is tired of being labelled a so-called special person and kept in groups with others also seen as “special”.
This means that the work roles which fully fit Bhawna will engage her as an intrinsic part of the community. She has so much to offer. The need is to accept it, learn it, find a valued role, step into it, maintain it and defend it. Many were the options that were placed before her. Many places where the community would be richer because of her involvement.
She tried all of them but was not gainfully employed with a real salary with typical people. Then a small gathering of local business leaders was held. And one businessman came forward and said he was willing to ‘try out’ with Bhawna working in his department store. When she came to try out, one of the women invited her to join the circle of women doing the packaging work, all together. Bhawna took her place and immediately could feel that this was indeed, her place. You could almost hear the click. From doing the work, to making friends with the colleagues, Bhawna was right there, one of them. Not only did she look the part, she was skilled to do the work. Training on the job took place and Bhawna learnt at a fast pace. Not only was there image enhancement, as the guiding theory requires, but also competency enhancement. Both are made visible and very real in Bhawna’s life. So real you can almost feel it.
And then the day to pay salaries came. The local business man said, ‘Same work, same pay’. What a joy for Bhawna to the paid the same wages as everyone else. And what a way to take one’s place in the community, as a valued member and employee. Slow, sure and important steps were taken to facilitate Bhawna into the important role of employee. And a valued community member leading the way to ensure that Bhawna was one of the valued workers of his place. Theory is just theory. But theory made real in the lives of others is what brings the gifts that Bhawna has to offer with a community which needed those gifts.
Remembering Amma
Grief is a universal human experience as beloved elder family members pass from this world. Mukund, a young man living in Lucknow, experienced just such a loss this past year. He, along with his brother, grew up with his “Amma” at the centre of his life, as she took care of him and his brother, and created an atmosphere of warmth and love at the heart of the home. With his parents both working professionals, Amma was in many ways mother of all, bringing everyone together under the roof of hospitality and love. The entire family looked to Amma with deep respect and gratitude, as she put the needs of all others before herself.
When Amma passed from this life after a period of physical decline, the family was heartbroken. Young Mukund and his family found the loss of this powerful force in the lives almost too much to bear, and they clung to each other for comfort and sustenance. The memories were so clear and sharp, and loss was keenly felt, almost a physical pain.
But pain subsides to an ache, and that ache dulls over time. The family began to get back to their lives, as they reckoned with the new normal of life without the presence of the woman they loved so much. Mukund, however, wanted to create a way to bring his Amma’s contributions and identity to living colour for those who knew her, and those who did not, and began to think of ways he might do this.
Mukund approached his family with a desire to honour the legacy of his Amma with a documentary and announced this to his Dad with surety and confidence, who agreed to team up with him to get it done. They were quite amazed to see that he had developed a whole script and screenplay, and he pitched the idea to his brother. In Hindi, he shared, “Rachit aapko pata hai mai Dadi ke liye movie bana raha hu, aap meri movie mein interview dene mein interested ho?” (I am developing a movie for Dadi, would you be interested in interviewing for the documentary?)
When Mukund entered this world, the doctors attending his birth had great pessimism for his future. As a baby with born with significant disabilities, they even described him as a “vegetable”, and warned his parents that they should hold little hope that he would make a contribution. One wonders if they would recognize this young man today, in the centre of family life, and the one who holds the most central role in the family, the role of creating a living artwork of the legacy his beloved Amma has left for the family to take forward. Generations of the future will have the chance to see how this important thread of their lives has travelled from grandparent to parent to child and beyond, thanks to the gifts and talents of this one young man. Mukund - family historian, legacy-keeper, treasured family member.
the Power of Interpretation
When you first hear about Rick, you will likely hear all sorts of good things about him.
“He knows what he wants – he’s a definite kind of guy”
“He’s a good traveler by road and train”
“He’s a thoughtful, observant guy, easy going and kind”
In fact, last September, that’s how a group of Rick’s family members and friends described him to others, all of whom gathered to think about his future.
With that lovely description as a foundation, now we were ready to meet Rick in a place that let us see him. No one mentioned the disability he experiences, any so called “deficits”. Although having autism is a simple fact – some might consider it is problem, others might consider it is attribute, but it does not define this young man with so much possibility laid out in front of him. Instead, we looked to the qualities that matter the most in thinking about someone’s full life, even someone’s calling. The way that people who know and care about Rick created such a powerful interpretation of him to the rest of us, meeting him for the first time, that we were all able to envision him easily as the entrepreneur running a juice stand, a skier, a gamer, a bachelor chef, a tech-savvy man who is an excellent communicator.
At the close of the process, one of the circle members noted that this successful planning process was embedded in his Rick’s family and friends interpreting him so well to others present. There is a powerful role for each of us walking with people with disability to contribute to this process of interpretation- others look to those of us next to people with disabilities as guides, and when we say positive things in respectful ways, it puts good things into the minds of others about the person, and maybe about all people with disability. What a powerful lesson Rick’s family and friends taught us.
A minor miracle and some Good detective work
Relationships and a sense of belonging fuel our lives, give it meaning and a desire to thrive against all odds. In the lives of many people with disabilities however, freely given, unpaid relationships are few, if at all. And this wound can shake askew the very core of one’s being.
Rosy, now sharing an apartment with two women in the quiet neighborhood of Herbertpur, is a lively, helpful, and sprightly young woman, and much loved. Her housemates and everyone who knows her, acknowledge her as a leader, home maker, a quick learner and an advocate. Rosy had lived in an institution in terrible conditions for many years. After moving from the institution to the community, she has grown from a quiet, shy, timid girl to a happy, carefree adult. Yet, there was something vital missing in Rosy’s life.
People around Rosy, people who live with her and know her closely, noticed that she loved visiting the local Gurudwara, she was familiar with the Punjabi language, and that she repeatedly expressed a desire to go to Poanta Sahib, a nearby town in Himachal.
They knew that Rosy longed to reconnect with her family, although she was lost from them since she was a young child. Rosy remembered they were bangle sellers, and that she used to help out with them at the langar meal in a Gurudwara. With those few clues, the team set about trying to make the connection. A visit was organized with a well-connected Sikh family near Poanta Sahib, and they immediately connected to Rosy’s buoyant personality, and the people who know Rosy were so surprised to see how outgoing and confident Rosy was when interacting with them. The visitors enquired about her past, her memories from the past, and clues which might lead to finding her family. Rosy was quick to respond excitedly in Punjabi – Rosy was aglow in her true element! She mentioned the langar meal that she helped prepare, and this was a great clue, as the team learned that certain Gurudwaras serve certain meals. Now they had a location- they knew which particular Gurudwara she belonged to.
Arriving to that particular Gurudwara, they enquired about a bangle seller family, and were directed immediately to the home of her brothers. A joyful reunion happened at that very moment, and Rosy has re-established relations with her two brothers, her step-mother and her sister, all of whom are so enriched to know their long-lost family member.
This is one of the “minor miracles” that are seen so often in this work of helping people take their place in the community. In Rosy’s life, having family brings renewed hope for exciting possibilities; reconnecting with her roots, reunifying with her family, reviving of old familial relationships – any or all that can help heal those deep wounds in Rosy’s life, that can uncover the real person that she
is - who is loved, cherished, and belongs. In the life of those that helped with this astounding bit of detective work, this experience also brings renewal, deep satisfaction, and a sense that the work really matters.
Just wait
For many people with intellectual and developmental disability, especially those in segregated programs, waiting often becomes one of life’s most frequent activities. Waiting for someone to listen, waiting for the next activity, waiting for a family visit, waiting for the next meal, waiting for someone to assist you. For Sumitra, institutionalized for over a decade in a shelter home, each day has been much like every other day, a routine of sleeping, eating and waiting filling the hours. Sumitra committed no crime, did nothing wrong, and came to this “waiting place” from other “waiting places” before that. There seemed little hope until a year ago when she was told that she would have the opportunity to live in a regular home, to have freedom in the community, to possibly work, earn money, and live her own life. It seemed too good to be true, but Sumitra visited her future home and indeed, it seemed possible. Maybe for the first time in decades, she seemed to feel hopeful.
But then, lines got crossed, the message went south, the path to freedom was blocked by tangled paperwork and bureaucratic snafus, tiny power struggles and other pressing priorities. Days passed, and then weeks, and at first, everyone assured her it would happen soon. Months dragged on, and advocates became distracted. It seemed really complicated to untie knots. Some said, “Just swap someone else who is easier to get out.” Someone not so tied up, perhaps. Every few weeks, visitors from the community would try to avoid Sumitra, standing just outside the institutional door waiting for an update, a word of hope, for someone to answer her eyes, increasingly less hopeful. Everyone would say, “Just wait, we are trying”.
Fortunately, a small band of advocates kept trying to untie those knots by calling just the right person, by writing another email, by reminding the knot-tiers that “Sumitra is waiting for you” and “Sumitra is a person, not an inmate”. For eight months, Sumitra waited just outside that door for a way to open, and open it did, finally. She walked through those three locked gates, out from under that watchful gaze of security guards, into a future where things happen. Where each day presents new experiences, new possibilities, and a fresh start. Where a day of engagement and challenge makes it worth getting tired for at the end of a satisfying day.
This is a rare ending of a story that plays out across the country, as institutionalized people wait for a change in policy, and change in practice, or a way to open somehow. It was not luck that gave this story a different ending. It was a small handful of people who hung in there with Sumitra, who kept on trying even when it was difficult, and who resisted the constant encouragement to forget about Sumitra. A rare ending, but only the beginning for Sumitra. Those who are walking beside Sumitra in her new life agree that they will think twice before asking Sumitra to “just wait”.
A home of her own
Janaki Amma loves hosting, making chai and doting on her daughter. She is a woman with cognitive disabilities, with a frame frail and a great sense of humor. As we sit down for tea, she wants us to see her new shoes and clothes that she has folded with great care. She insists we have tea, and biscuits.
Life for Janaki Amma has not always been easy. Till recently, she and her daughter, Komal lived at a government shelter home for women in Dehradun which houses abandoned and destitute women with mental and cognitive disabilities. More than 100 women, at any given time, live at the institution and their movement is severely restricted. There is no concept of privacy, or agency for these women. As the State’s wards they do not have the rights of an individual. They cannot make any decision of their life, from what to eat and wear to where to live, with whom and how. The women are referred to as either “inmates” or “children”, by the officials, caretakers and other staff. Most of these women have no families that want to take them back. They have no visitors, and very little interaction with the outside world.
A small group of committed change agents – the Rural India Supporting Trust along with The Hans Foundation and Keystone Human Services International have worked to change this narrative. We believe that every individual, irrespective of their cognitive and mental status, should live within the mainstream society, as part of a community. We are committed to the idea that institutionalization
of people with disabilities in closed off and heavily restrictive institutions must be challenged, and it must be changed. With a partnership with Government of Uttarakhand and Dehradun’s premier Lehman Hospital, two family-style homes have been leased that are embedded in a community, where 8 women with developmental disabilities live, with one round the clock caretaker. In the last 6 months, we have been a witness to the value of autonomy and decision-making, and the positive and therapeutic effect that has had on the women in these homes. We have seen first-hand the changes these women have undergone, and how their neighbors have also evolved to overcome their reservations about them. The community has started to look inward to question the stigma and the discomfort they have only after a few months of interaction with the women.
We dream of a world, where every individual makes her own decisions, of her free will. Where every individual has capabilities of being part of a community. Where the shackles of institutionalization, the loneliness of abandonment and the disregard for a person’s humanity, are undone. Where everyone has a skill set to be a productive member of the society, with a sense of belonging to a family, to a home, to a community, and with a life of normalcy and autonomy. We believe that the Community Lives is a small step and a giant leap towards this goal. We are very excited to see the journey these women will embark upon, and what they make of their lives.
tRA nsfo R m At I on I n s e RVIC e
handwork and heartwork
The artisans and craft persons of native places know that their art and craft carries with it the knowledge of those that have gone before, the honed skills of producing something beautiful, meaningful and useful with your hands, and the knowledge that a created object is more than its form and shape.
A small organization but driven by vision located in the heart of Uttarakhand, and committed to bringing people together, starts with the understanding that all enterprises are indeed human enterprises.
The land provides what is needed to create useful and beautiful things
Economies can be made by people, partnerships, shared goals, with tasks undertaken with joy in the work. This enterprise is a different sort of space than what you would expect of a typical program working towards livelihood for people with disability. One does not see a room full of persons with disabilities, congregated and segregated, churning out candles, and newspaper bags, and grinding spice or flowers for Holi colours. One does not see the signs of charity – the donation placards reminding us of the benevolent folks who donate. Nor does one see classrooms where adults are treated as children. Rather, the hum of the printer and the everyday noises of an office, combined with creative spaces for a small workgroup to work just like any other. A few people
work in the space diligently, working together in harmony to meet the deadline of the order for the hand-made paper products they make. It is only in getting close, and interacting with the people, one would notice that some happen to have disabilities. The man who has started this small enterprise, does not tell us that this is a disability project, nor does he highlight it. He was keen not to do anything ‘special’ but rather chose the normative ways to bring about inclusion and employment to those who were in the margins, using the rich resource of a community steeped in the tradition and skill of working with the hands to create the artifacts of a community.
All give what they are best suited to contribute. Mr. Rishab, after a year of employment, uses his skills for precision to place eyelets on paper products while using his management and motivational skills to help run the office and keep people on-task. He posts the daily “quote for the day” for his co-workers and partners and has risen to the demands of the job. Behind his contributions are the desires to produce for the community with pride, to stand for generations of people who have done such meticulous handwork, and to share it with the rest of the peoples of the land. The commitment of the initiative now extends to hand-crafted furniture, and other products from the land.
A quick study of Social Role Valorization highlights the importance of the ordinary. In this space, the ordinary is actually extraordinary. The state of Uttarakhand is full of the richness of native handicrafts, produced by the hands of people over decades, with a market for the beautiful products from the hands of local people. The paper made here is made by people with and without disability, with a stake in their work, and shared profits among those who produce, not the service itself, not the salaries of professionals, but shared by the hard work and the heart work. The work is divided among all the workers, and everyone does their part regardless of the ability but keeping in mind interest and inclination. We are informed that the grounding of this enterprise is not filling the daytime hours with busy-ness, but instead with business that uplifts everyone. “Small is beautiful” as a principle guides this enterprise, and a small, integrated group of people work together to contribute to the national market in fine-quality local handwork – market integration, and people integration in the truest sense. There are many lessons to be learned, not the least of which is that the work of the hands has value, is not trivial, and has great importance in the cultural memory and real value to the economy.
the Gift of People-Power
What does it mean to carry a mindset that disability in society is a gift that we cannot live without?
That people experiencing disability and those gifted by fullness of presence of such persons in their lives carry important skills, lessons, and technique that have benefit to all people?
This bit of beautiful work illustrates just such a moment, where we can recognize the methods drawn from work within the lives of people with disability.
Just this very concept was demonstrated in Purulia in December, as a group of people committed to a stronger, safer world borrowed a powerful tool from the disability movement and applied it to their work.
As is well known, ‘planning’ is often done by those who carry both voice and power, and the result of such planning often serves to direct others, who are expected to conform and comply. For decades, this has been done to people with disability, as professionals, governments, organizations, and even families direct their futures. In this process, the voices and agency of people with disability sometimes remain unheard. For people with intellectual and developmental disability, this has often led to small, constrained lives, where people’s gifts are never offered.
Person-Centered planning techniques were first developed as a way to recognize the agency and full-personhood of a someone who may need help in directing their future. In fact, these types of techniques require that the person be at the almost literal centre of the planning process, while those in support of the person listen deeply and make respectful guesses about what the person might want, or need, or desire in order to live a full life. These process, such as PATH, or MAPS, or Personal Futures Planning, are being used to plan WITH rather than plan FOR people with disability in India.
A small but passionate group of people from diverse areas are working in Purulia, West Bengal to adapt such techniques, bringing together lots of diverse stakeholders to guide the vision and the action of a new initiative, Aadhar (an Outreach Project of Biswa Gouri Trust), designed to empower local organizations such as Bandhu, Purulia doing important community work. Experienced in using PATH as an inclusive process for people with disability and their families, Sarbani Mallick, Meena Jain and the team at Biswa Gouri Charitable Trust and her colleagues decided to borrow from their planning tools for people with disability to craft their work together, as they knew that the local people working and living in the communities they serve must have both a voice and a choice in the planning stages. The images say it all – diverse people putting their hearts, minds, and heads together in a way that honours those at the centre of the work. One can see that the circle of support is all participating fully in developing both the vision and the path to get there. Thank goodness that the presence of disability within society has taught us to listen better, adapt, grow and thrive. We meet together in circles in family homes, in meeting rooms, inside, outside, in the fields and the forests alike, to dream together, and to actualize that dream. All voices are heard, and all voices matter.
ACK nowled G ements
Keystone Institute India thanks all who contributed to this effort through sharing their powerful stories and images:
Vidya Sagar
Action For Autism
Community Lives
Herbertpur Christian Hospital
KPAMRC
Ms. Kiran
Mr. Aratrik
Mrs. Bratati Choudhury
Dr. Rita James
Dr. Neelam Sodhi
Ms. Maaya
Mrs. Suganthi Murali
Ms. Bhawna
Mrs. Vinakshi Singh
Ms. Rosy
Mr. Mukund
Mr. Rachit Pandey
Ms. Sumitra
Saahas Foundation
Mr. Shahab Naqvi
Biswa Gowri Trust
Mrs. Sarbani Mallick
Ms. Sujata Khanna (Photography)
