About elizabethneuville

Executive Director of The Keystone Institute, the educational institute of Keystone Human Services. At the Keystone Institute, we focus on creating educational events and forums which promote ideas to advance the possibilities of vulnerable people accessing the good things that life has to offer. I also serve as the Director of Keystone Institute India, and educational institute on disability, community and innovation, and currently divide my time between India and the US.

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

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

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

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

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

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

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

 

 

Reference:

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

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Feeding the Vision in West Bengal

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

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

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

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

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

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

Invitation

I astonish peopleYesterday, I asked a question to a group of about 40 people from all walks of life, gathered under a hand-constructed hut providing afternoon respite from the hot Tamil Nadu sun. Sitting, standing, listening intently, are men, women and children, mostly south Indian, from this rural part of Tamil Nadu.  People from the surrounding villages, people connected in some manner to this fledgling but beautiful effort in the district of Villipuram to bring together people with and without disability in communion, community and relationship.  All of these people care about restoring the plot of land they have to fruitfulness, and restoring themselves and others to the notion of community that, for many of them, has rejected them so profoundly. Some young people in the group are volunteers from Spain, France, the Netherlands, and Germany, here for a few months or weeks to try to move the world forward a bit. Most, though, are from right here in Tamil Nadu, and have stories of brutality and rejection to tell that would make your hair stand on end. They are people who grew up in orphanages, or were abandoned in hospitals, or had stones thrown at them, or were told, quite literally, that there is no place for them in the world. There are also families and those who have been caught up in the vision that this little place holds for us to learn how to be together.

It’s a question which seems unaskable, when standing in front such a group.  It’s rude. It seems an affront, an impossibly personal question when one considers the truth about what we as humans have perpetrated on such people and their families. I steeled myself, and asked what their vision was for their lives and for the future. Seems a hard thing to ask someone who is in a small lake of calm after a sea of trouble. It’s a lot to ask. And the answers came flowing.  Many people even stood up, came to the front of the room to be heard by all of us. Such dreams we humans have. Such robustness. And here is one of the statements that caused a small shift inside me.  One that I believe made an impact on each of us in that gathering in shelter from the harsh Tamil sun.

“I want to be invited to come back”

What a bold and powerful assertion for this South Indian man to make.  He has been so profoundly rejected, this man.  And yet resolute that it is not enough for us, in these enlighted days, to allow him a seat at the community table.  To afford him some sort of job. To allow him the right to marry. To make sure his children and all others are allowed into what he calls ‘normal schools’, to not ask for his father’s name but to call him by his very own name.

Does he recognize what he is really asking?  Much more than simply a pathway back to typical Indian life, or permission to enter.  That is not enough, not by a long shot. He understands that after such rejection and brutality, he wants to be issued an invitation.  A request.  One that allows him to decide whether such a community should be graced with his investment, his presence, his gift. It seems to me only fair.

His final vision is that he will “astonish people”. That his children and grandchildren will sit all around him in respect, and look to him for wisdom.  Again, it is only fair.

Quieting that small voice….

Regardless of what is happening specifically in one place or another across the world, we cannot help but see ‘signs of the times’ that Dr. Wolfensberger helped us become keen to. Devaluation is universal, and each of us holds devaluing thoughts and ideas about groups of people. We may wish we didn’t, but we do. Sometimes such negative and harmful thoughts rise up unbidden in our minds. However, we hope that we catch ourselves, that we recognize it, and that we quiet that voice, recognizing that we can be our better selves when we set our minds to it. When the tenor of the statements made by some of the most highly influential people on the planet reinforce those negative stereotypes, they likely give us permission to be less than our best selves, or maybe even our worst. They can spur us quickly from thinking bad thoughts to doing bad things to people.The impact of that across our global society, where an idea or a statement can cross the globe in seconds, and encourage our “collective bad selves” is a terrifying prospect to me. We need to help each other quiet our worst selves.

One of my meditations in times of trouble for people I am trying to stand by, with, and for is to ask myself, “What would it take for me to do really bad things to others, for me to violate the principles I try to live by? To translate bad thoughts into bad actions against other groups of people?” This is a hard set of questions to ask, and harder yet to answer.

 

 

On the ‘eve of a listening session

Tomorrow, I have the responsibility to listen, learn, and react to the voices of nearly 200 people with intellectual disabilities and their allies and mentors. I will ask them to share their perspectives, their histories, their vision, and their opinions.That is a lot to ask of people, and tonight, I work to prepare myself for this. I will try to be a good servant to their voices and their experiences.  I will faithfully record their voices, words, and intent as best I can.  I will share those voices to those with power to make change and move towards the imagined future they will speak of.

The challenges are significant as a person with automatic status amongst many Indian people by default of the geography I happened to be born into. This is the kicker for me – most anything I saw or do seems to commands respect and attention.  My ethnicity as American of European descent brings automatic legitimacy, or at least interest, to whatever my message is, and that may not be fair or helpful much of the time, but it is the reality. It is also a reminder about the realities of having a disability in India, or just about anywhere in the world. It’s not fair that people think they know everything about you just because they think they know one or two facts about your birth, or your condition. But it also just is. The fact of having a disability – particularly an intellectual or developmental disability, makes people think they know everything about you.  Not right, not fair, just is.

Our work to change the future depends on us recognizing the injustice, not of disability itself, but of the judgement and stereotype that is so entrenched amongst most people. Tomorrow, it is my commitment to keep myself as small as possible, so the people I am listening to get to be big. That is only fair and only right.

 

 

 

 

Making It Real

The 24th National Parents Meet in Jalandhar, Punjab was a potent mix of passion, gritty determination, and celebration. From across India, several hundred family members of people with developmental disabilities came together, along with their sons and daughters, to meet, plan, share, learn, and celebrate the hard-won gains they have made. As had been the case in most places, it is the coming together of the parent groups in a common voice  which has formed the backbone of the advocacy movement for people with intellectual disabilities.

The disability movement is India is a smaller community than you might think, so it was no surprise for me to reconnect with people I had met at other events all across India.  In this way, I had a small taste of the kinds of strong connection that these families have for each other through their long and faithful work towards creating a world where their children have access to the good things of Indian life. Governmental leaders and professionals came to speak and listen, and were respectful to parent leaders, recognizing their natural authority and their experience.  Generational leadership changes within the parents association, the self-advocacy movement, and the field itself speak to the change that is in the air for India, for the many people with disability present at the gathering, and for families.

As an auspicious sign of “making it real”, which was the conference theme, a young man with disability who was present for the conference was introduced to the Pro-Chancellor of the University where the event was taking place. In the course of that very day, he was interviewed, offered, and accepted a position at the University which includes housing and full benefits.  Now that speaks to the power of community networks, the importance of people with disability to be in regular life, and the potential that typical people can and will open doors to welcome people with disability when given the opportunity.

 

 

Make a little room

 

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It is tempting to think of big sweeping changes as we consider our work of helping a society learn to make space for everyone.  Big plans for our initiative were explored and crafted out of our hearts and minds 9 months ago in New Delhi as we imagined ideas towards inclusiveness would spread across India, policy would shape itself around such ideas, and we would be a part of the change movement that is a part of India in so many diverse areas. Indeed, it is an exciting time to be doing this work, in this place and at this time. As we re-gather with our planning group nearly a year later, I am reflecting on all of the work that has been done, and discerning which is of biggest import.

We know that for ideas to take root and change to happen, work must be done on all 4 levels – societal, community, family, and individual. It is a bit of a  rush to think about the impact one’s work may have on the very fabric of society, and indeed, the change agentry work being done  alongside The Hans Foundation may have just such an impact. However, the impact of a good idea that has the capacity to change the lives of an entire group of people must resonate in the lives of individual people and their families for us to grasp the tender core at the heart of the matter. For, in the long run, and also in the short run, the experience and impacts of having a disability in Indian society is experienced by individual people.

A few months ago,  a young man of 21 years of age gathered with a small group of people who care deeply for him to think about his future.  He is a man who speaks little, and many would say he is impacted by autism in significant ways.  He was accompanied by his parents, his teachers, and a number of others interested in beginning to explore and create a positive and possible future alongside him.  A number of commitments were made, as we imagined this young man developing a network of friendships which will expand his resources, and help him transition into the role of an adult son, with his own relationships. A vision of a young man who is has a bit of an adventurous spirit – who we can see as a hiker, a trekker, a music lover with an awesome set of headphones and an eclectic playlist.  A man who has friends and relationships with people outside of his family, and has a bit of a life outside their warm and strong family foundation.

At the conclusion of our work together, his mother spoke movingly of how it was a risk  thinking about her son having a real future, and how hope had stirred again inside her.    A month or so ago,  she sent me a quick email because she could not wait to share the news until our next planning circle meeting. Her son had spent 30 minutes visiting with a neighbor without either of his parents present.  A first in many, many years. A small thing, but not so small either. It speaks to the potential for the world to shift just a bit to make some space for this young man.

I will hold this gem of an idea with me over the next few days of high-order planning and trying to work on a systemic level.  It only matters if we can get the world to move a bit.

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Ghost in the Machine

Institutions have been on my mind.  Their definitions, their characteristics, their meaning, their impacts.  Hard and wrenching images and scenes from the hellish large institutions I have seen too many of here in India vie with the images of hope and possibility of families who want good lives for and with their children- both keep me up at night. I had an illuminating talk with a colleague who reminded me of the problem of being dogmatic about issues like institutionalization in a society which you do not, and will never, fully understand. Fair enough. Upon my return to the US, I opened up the latest issue of the SRV Journal, and there before my eyes was Martin Elks’ article about institutions and their features, especially comparing the ‘new’, bright and shiny institutional models being pedaled in the United States with the monstrosities of the Willowbrook and Pennhursts which blight our history. Dr. Elks has proposed that institutions are a ‘meme’ running rampant through our society, spread across time and space, and re-occurring, seemingly spontaneously. He reminds us that Sarason (1969) warned us that “the beginning context is fateful for what comes later”, and Dr. Wolfensberger likened this to the ways that institutions, organization, and settings have ‘ghosts’ within them that will repeat certain ways of thinking and doing things (Wolfensberger, 1989) , a bit like there is a driver in the driver’s seat who no one sees or acknowledges.

One of the beautiful and terrible things about applying ideas, especially those ideas which center on people and their relations, constructs, and categoricals in a different culture is that you often get it wrong, and are forced to re-think and re-organize your assumptions.  Reading Elks’ article, and having several rich conversations with trusted colleagues have helped me struggle with this issue. So I am, as I often find myself,still confused, but hopefully on a higher level and about more important things.

In western societies, the term ‘institution’ and ‘institutionalization’ have a generally understood common meaning when used in the context of disability to mean a facility where people with disability are congregated together, often isolated from typical society, and are subjected to uniform procedures, and treatment which tend to be controlling, authoritarian, and de-individualizing.   Large residential facilities, nursing homes, psychiatric hospitals, and, often, boarding schools are considered to be such institutions.

In India, there is not a current consensus on the use of the word, or the concept, of institution. First of all, the word institution tends to be used in the broader sense, as “an established organization or corporation (as a bank or university) especially of a public character”  (Merriam Webster, 2016). In general, the value judgement inherent in the western use of the word in disability circles does not exist in the same manner.  Unlike most western countries,India has not (yet) experienced the large-scale, eugenics-based institutionalization of its disabled citizens, and the associated movement towards liberation from such places. Therefore, the work ‘institution’  is generally not laden with an association with abuse, neglect, oppression, and control as it is in other places.    One often hears that institutionalization has not been a significant factor in India’s societal  treatment of people with disability, and the word institution is used frequently to refer to any service organization.

However, it must be stated that there are indeed institutions in India, which fully fit the western notion of such places. Government psychiatric hospitals, hostels for both children and adults (and both together, sometimes) and beggar homes  exist in all population centers.  In a place where different kinds of disability are often poorly differentiated, people with mental disorders, physical disabilities, developmental disabilities, and autism are often lumped together in such places, and simply identified as ‘mad’.

If one decides to take a stand against such congregated service types, that no doubt have served a life-saving function (and may also serve a death-causing function at the same time)  there are implications. First, that person must realize that even such traditional institutions may well be, for many people, an alternative to almost certain brutalization, starvation, and death on the streets. This reality is one that advocates for alternatives to institutions must reckon with and come to terms with.

Then there are a host of other complications.  The western service models of supported living and small community group homes seem at times like a dangerous pipe dream in a country where communal living is the norm, and where there are precious few services at all, much less systemic integrated services. There are a host of services using relatively large congregate residential models which are being planned, conceptualized, and built as I write this. This is the direction India is going in, and it is a familiar one, fraught with problems and yet also an understandable solution (often handed over by western consultants) to families who live in terror of what will happen to their sons and daughters with disability where long-standing expectations of extended family-based life care is eroding fast.

It seems possible on the one hand to encourage and promote truly integrated Indian models which are highly individualized, life-giving, and are based in crafting desirable futures and facilitating informal support networks.  I have no doubt that this “bottom-up”, one person at a time strategy will play a powerful role in giving strong families and people with disability the confidence and experience to reap the benefits of such person-centered action strategies.  On the other hand, such seed planting will hardly address the needs of a nation with 1.3 billion people and no coordinated infrastructure for services and supports for people with intellectual and psycho-social disability.

There is likely a justifiable rationale in working with the new and emerging congregate model to raise awareness about the problems inherent in institutions – problems which already are plaguing such services such as de-individualization, to stave off the poor treatment that invariably occurs when devalued people are all together, apart and away, to actively promote and engage typical citizens in the lives of people in such facilities, and to promote entrance and exit routes to and from the service for the people living there, and for the surrounding communities.  Perhaps the lessons of moral treatment era can be brought to bear – communities which are physically attractive and promote engagement, a focus on whole-person development rather than a medicalized “cure”, a restoration of identity and connection rather than a solution to perceived brokenness.  If nothing else, one can select organizations to support and work with who are up to and open to the task of raising their own consciousness, applying keen and sharp eyes to the signs and effects contained within the meme of the institutional approach, and committed to working in service first to people with disability, and second to the organization and themselves.

Elks, M (2016) New quasi-institutions as examples of human service unconsciousness. The SRV Journal, 11(1),30-40

Institution. (n.d.). Retrieved September 13, 2016, from http://www.merriam-webster.com/dictionary/institution

Sarason,S. (1969) The creation of settings. In Kugel, R.B. & Wolfensberger, W. (Eds.) (1969). Changing patterns in residential services for the mentally retarded. Washington, DC: President’s Committee on Mental Retardation, 341-357.

Wolfensberger, W. (1975). The origin and nature of our institutional models (rev.ed.). Syracuse, NY: Human Policy Press.

A Declaration of Identity

“I am not a mental patient.  I am a secretary.  ”

Unnamed long-stay patient at government mental hospital

She has lived for decades in the institution, yet her yearning for valued roles, respect, and dignity shine though.  She sits in the back of a room, a tiny woman in a room full of professionals speaking articulately about the needs of people seen as ‘like her’. She rises when encouraged and asked, and if she had not been encouraged and asked, she would never have been able to create the space to express herself or be heard. She sits in her government-issued pajamas (one of three pairs issued by the government hospital)at this listening session, surrounded by esteemed people of relative wealth and relative power. She speaks with an astonishing level of clarity and courage to an issue near to my heart.  She speaks to the deep human need for place, for belonging, for rootedness. I am somebody, she tells us, I am MORE than my impairment.  I have gifts and contribution to offer.  My gifts are wasted as I sit here awaiting a chance for a new life. Her simple words, “I am not a mental patient, I am a secretary” speak volumes about the power and possibility of societal roles.

Dr. Wolfensberger spoke and wrote about role-avidity – the idea that people are hungry for social roles.  He spoke more powerfully of ‘role starvation’ for those deprived of such roles.  He speaks of ‘role famine’  for those living in a world destitute of valued roles and yet full of deeply devalued roles such as “mental patient”. In this moment in time, I am struck by the abiding truth in his conceptualization of the realities for deeply marginalized people. For me, this moment crystallized the translation of theory into the life of one woman trying to reclaim her history, her contribution, her identity.

This is a concept which may well belong in the realm of theory and academia, but is rooted in the experience of individual people who experience its terrible impact and its beautiful  promise of reclamation.

 

Curb our Enthusiasm

The new Mental Health Care Act, passed yesterday by the Indian parliament, has been winding its way slowly through the Indian legislature since 2013, and replaces the Mental Health Bill of 1987. On the one hand, advocates celebrate its passage, realizing that limiting the use of electro-convulsive therapy, addressing the immense shortage of mental health experts, decriminalizing suicide, increasing the legal autonomy of people experiencing mental health problems, and mandating that mental health services be affordable and available are parts of the picture.

The narrative that picture is embedded in is one that we should take a closer look at and consider.  It is the catchy narrative that explains mental disorders as a medical condition that requires specific address by treatment. A comforting and easy way to see mental illness, for those of us who like neat thought packages, as we tend to do. At its least nuanced, this creates a mental picture where we see a sickness, and see medication as the first answer, and confinement as a strategy while the medication is adjusted. Neat and clean.

Of course, simple solutions can mislead when the true problem is complex and hard to unravel, and, no doubt, the context in which mental disorders exist is truly complex.

If it is true that mental illness is inextricably linked to poverty, then this complicates the picture.  We know that people experiencing major mental illness are nearly always poor.  Do they become so because of the mental disorder, or does poverty “produce” mental disorder? The frustrating answer is, of course, yes to both.

If it is true that gender oppression is inextricably  linked to mental illness, the picture complicates further. Deeply devalued widows rejected by family and thrust out into poverty and homelessness, women subjected to brutality at the hands of family and strangers, and the picture blurs even more.

If it is true that performing jobs that are torturous for human beings to do, jobs that are reserved for the poorest of the poor, with little hope of relief, causes people to lose their bearings, retreat, and lose their clarity of thought and memory, again, the picture needs to be refocused.

The above inconvenient truths reveal that simple solutions to “bring people with mental disorders back on track” only address a part of the problem, and may create unanticipated problems, at least for affected people. If indeed, a society “manufactures” people with mental illness as a result  of poverty, oppression and associated brutal life conditions, at least in part, we need to keep that in our minds, and more importantly, our mindsets.

For me, it is helpful and important to remember and even embrace the complexity of the interplay between social and environmental factors.  The medical model of illness will never fully answer the question of how to address the big questions raised by the issues of mental disorders.

Meanwhile, people with mental illness languish in mental hospitals, beggar’s homes, and on the streets. We can celebrate a legal framework that offers people support, assistance, control, and recognition of their humanity and value.  There is something to be said for helping people to get “back on track”. Don’t think, however, that it will be enough.