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.

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.

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.

 

 

 

 

Great Questions, Answers that Matter

Judith Snow

“A great question refuses to be answered; so it keeps leading us into deeper connections with each other & into deeper thinking.”

– Judith Snow

 

Change agent, activist and friend Judith Snow once said this, and it immediately captured my imagination at the time. Over the years, it has become a powerful tool of practice for me. A rich set of questions can yield immense wisdom when asked of many people, with a genuine curiosity at the core of the asking.

When we first began to think about the work that needs doing in India around disability and equity, and there came an opportunity to do a part of that work, it seemed wise to begin with some important questions that will add richness to the understanding of both the “asker” and the “asked”.

And so has our work begun, not with answers but with 4 simple questions. These questions are being asked in 45 participatory sessions being held across India, and they are being asked of families, people with lived experience of disability, professionals, and everyday Indian people who might be described as community members. The answers to the questions are respected, recorded, captured, and shared back. They also begin to fill out the tapestry before we can ask other questions, the very first questions of service design, “Who are the people?” and “What do they need?”

The four questions which are grounding our work include the past, the present, the future, and the action. Each has profound importance. One cannot know where one is going unless one knows where one has been. One cannot establish a vision without an acknowledgement of the present. One cannot formulate action without sensing a sharp tension between what is “now” and what “should be”.  A discomfort and even chafing at the conditions of today propels us towards a future in strong ways.

The answers are compelling, profound, diverse, and slowly painting a picture of life, hope, change, and possibility, while acknowledging the hard and faithful work that needs to be done.

When we have asked these questions 45 different times, among 45 diverse groups of people gathered in meeting rooms, offices, conference rooms, and wherever people can carve out a space, we will pull together these expressions of pain, knowledge, wisdom, hope, and, yes, direction, into a single snapshot which will boil down this work into one rich view. This informs the work of Keystone Institute India, can inform the work of many others, and will in some sense cause change simply by having asked elegant questions that echo in people’s minds and hearts for a long time.

“What is the HISTORY of people with disability – in your society, your neighborhood, your community, your family, your life?”

“How are things NOW?”

“What is the VISION for the future?”

“What ACTION must be taken to make that vision a reality?”

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One of the most profound moments came for me, as a facilitator, when 12 men and women, all currently institutionalized in government mental hospitals for decades, came to a session and told us of their realities. One man simply stated, “While we have been here for 15 years, the world has changed, but we have not changed at all”.  This observation brought a hush to the room, as all 35 strong of us realized that one of the profound impacts of segregation are the discontinuities with the outside world which get created. Everyone in the room- professionals, families, and others were immediately able to feel the visceral impact of what it means to be rendered an alien in your own culture through having been separated in a timeless, changeless world where you are frozen in time. If we want to do right by people, listening to their experiences of the past, present, and future matters a great deal. Listening is a part of the process, and it may be a part of the solution to the problems of discrimination, marginalization, and oppression as well.

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The Doctor Is In: From Menacizing to Medicalizing

 

I was recently captured and unsettled by a widely circulated global conference notice describing mental disorders as an “enormous disease burden” on human society.This statement should give us a bit of pause, and cause us to reflect on what we know, what we assume, and what the impacts of such a mindset may be.

Humans have struggled with the nature of mental disorder since at least the beginning of recorded time, and many of the powerful metaphors of such live on with unbelievably deep and strong roots – they just won’t give up their holds on our minds, whether consciously or unconsciously. Many contain truths and helpful ideas, but each also falls short of providing a clear way forward for how to think about this human condition that impacts all of humanity and each of us.

People with mental disorders have been seen and treated as sages, wise men and women “touched” by the divine, and deeply respected, even cherished and worshiped as oracles.  If that is the role of people with so-called psychiatric conditions, we can imagine the lives and treatment they might have received at the hands of society.

“Menacized” in the middle ages in much of the western world, the focus on requiring people to submit in fear through methods of confinement, fettering, and weakening through beatings were the obvious result.  One cannot help but realize the parallel with the US practice of confining people with serious mental illness in prison today – over 350,000 as of 2012. This belief system – mentally ill as “menace” – has great power in our minds and simply won’t give up.

The predominant role today across the world represented a sea change – the envisioning of mental disorders as a medical condition. This is accepted almost without question in many parts of the world.In some ways, it has been a very effective change that has brought some good things for people who experience conditions of disordered thinking.  On a very basic level, it has been said that the purposeful shift to the medical mindset meant that, when a person had a episode of significant emotional distress indicating a mental condition, the men in the white coats showed up with an ambulance instead of the police with a wagon.

But the medical model carries with it all sorts of incoherencies when applied to mental disorders which cause distress and problems for society, but especially people experiencing such disorders. For many people, being prescribed lots of powerful medications without great care and careful oversight have wreaked havoc on people’s bodies and minds and focus, and have sometimes made recovering a full life out side the mental health system all but impossible. And, when people fail to respond to all sorts of therapies and treatments, custodial care or imprisonment remain as very real possibilities in many parts of the world.

Of course, looking deeply to history and around the edges of popular practice often yields great insight and even great hope, a much needed commodity in the mental health field.One need only look to the moral treatment movement to see glimpses of the power of people to get stronger, to gain a fuller life, to recover and even heal from difficulties both within the body and mind, and from a human society which can inflict devastating  wounds on those who are seen as different. One can look to  an organization in service to women with mental disorders who chooses to refer to the highly vulnerable and deeply persecuted women it serves as being “in distress” rather than “mentally ill”. This is a small but important distinction that allows for a different view of those women, and a whole different set of assumptions about what they might need.

We should be cautious about the mindsets we use to try to understand mental disorders.  There is no question that many of the frameworks for understanding it may be helpful – the medical model offers something important, but the disease mindset causes big problems in how people get treated.  The “recovery” framework, the idea that people can live full lives, contribute and grow has developmental assumptions which not only give hope, but help people learn to manage the aspects of the mental disorder which make life difficult. At the same time, this has failed many people languishing in prisons across the US. One thing we do know is no single framework offers a complete understanding of the phenomenon of mental disorder. Assuming that the answers lie only in the realm of science, or society, or medicine, or religion leads to “answers” we might regret.

 

 

 

Living Forwards

“Life can only be understood backwards; but it must be lived forwards.”
Søren Kierkegaard

What does the past mean for those of us trying to craft a positive future for people with disability? Understanding backwards, as Kierkegaard reminds us, creates the wisdom to move forward with a strong awareness of what we are moving away from, what we are moving towards, and what we are learning from the journey.

I spent time this week at a conference of the Pennsylvania Coalition for Honoring the History of People with Disability, whose mission is to tell the story of disability history, especially for people with intellectual disability, and learn from that story.  It is one fraught with terrible acts and big mistakes, but it is also punctuated by bright and shining moments of possibility and promise.  Often, the brightest of moments are sandwiched in between the darkest acts and practices.

Of course my mind begins working on the complicated issues of the history of people with intellectual and psychosocial disability within India.  Our work in India has included asking the question, “what is the history of disability within your family, your community, your country?”  We are intensely interested in the answers – so far nearly 200 family members, people with disability, and professionals in several geographical areas within India have contributed.  The picture is being woven together as a broad swath of Indian society  shares their seemingly contradictory experiences of not only profound rejection, but also deep connection and acceptance.

 

 

Pulling the threads of the story together begins to show the journey that Indian society is in the midst of, and that people with disability are living out and experiencing. Hard questions are posed in the telling of the history, that make us think beyond conventional wisdom and glib truisms.  “What is institutionalization?” arose early on in some of the sessions, and we all struggled with this question. Is institutionalization a mindset? Is it a building? Is it a group home or a sheltered workshop?  The word loses context quickly, and makes those of us new to the culture broaden our perspectives and, as a mentor of mine says, “go higher” in our thinking.

Many invested people are telling of the hard work of changing attitudes and fighting stigma in India, and the departure of the pity/charity model in favor of a developmental and human rights model.  I wonder all the while if India must progress through some of the “stages” in western countries that have worked towards community imperfectly and with some strong regrets. If there are global lessons to be learned from history, it seems wise to add those lessons into the mix and allow them to season with Indian people advocating for change. It also seems wise to walk side-by-side with people with disabilities and their families as a human service system is developed, to avoid services which are based solely on professional experts.  It seems wise to craft supports which avoid “community segregation” by clustering people with disabilities all together apart and away, even if that is a developmental phase many societies have gone through and are now trying to dismantle in favor of more natural, inclusive supports. Will the burgeoning Indian economy eventually demand a service economy that relies on expensive professional supports, and if so, how will Indian advocates respond? Talking about this issue now rather than once the issues arise also seems wise.

I greatly enjoy the practicality and straightforwardness of the vast majority of people I have been collaborating with and listening to over the past few months. I appreciate the question, “So what is the answer?” and “What is the correct model?”  Of course, the answers are complicated but lie deep within that fabric of history that lies within a rich and complex Indian society.  What will be learned, and how will the learning be used to weave the next few decades in our ‘forward living’?

When the Indian Coalition to Honor the History of People with Disability (yet to be formed, of course) holds its conference in 20 years, what will the story be, and who will have written it? This question should keep us up at night worrying a bit, but also make us feel deeply motivated to work hard to craft the story that we will have few regrets about.