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.

Plus One: A New Team Member for KII

We are pleased to announce that Bindu Sengar has joined the team at Keystone Institute India (KII). Bindu comes to her new role as KII Administrative Coordinator with great enthusiasm and capacity for this work. In this position she will provide key administrative support to our education and consultation activities. She began her full-time position with us on February 26.

KII Team

Betsy Neuville, Bindu Sengar and Genevieve Fitzgibbon

Bindu has a Bachelor’s and Master’s degree in English Literature, and is working on her post-graduate diploma in business analytics. She has years of experience in the development sector. Her most recent job was at Oxfam India where she began with a position managing the front office in the Lucknow regional office, after which she was promoted to Programme Associate at the Oxfam national office in New Delhi. Here she was responsible for helping to plan and execute various advocacy programmes focused on education, health, gender, and economic justice. She was also deeply involved with capacity building of staff and partners, event management, hosting and coordinating national and international in-house meetings, monitoring and evaluation of grants projects, and supported a multidisciplinary team of programme management professionals. Prior to this, Bindu was in charge of front office operations at the Taj Residency Hotel in Lucknow, one of a renowned chain of five-star luxury hotels, and earlier, was a customer care executive managing the head office operations for a company in the aviation industry.

While the work of administrative coordination should be familiar and comfortable next step for Bindu, community inclusion and disability rights is a totally new focus for her. But this sort of “stretch” is something that she is excited about. “I did a lot of research on Keystone before I took this job. The Mission and Vision of Keystone are inspiring to me,” Bindu shared. “And I am looking forward to helping us build strong connections and a foundation for this work throughout India.”

Her skills and experience will be a great asset to KII. As Administrative Coordinator, Bindu will be responsible for all aspects of office management, coordinating a host of training events and meetings across the country, and liaising between in-country staff, international consultants, trainers, allied agency staff, and others community partners. She will play a pivotal role in establishing and maintaining a base for our India central office in New Delhi. Bindu will support our Institute Director, Betsy Neuville, in the organization of all program activities and will work in close coordination with Project Manager, Genevieve Fitzgibbon.

“Bindu is a welcome addition to our team, and brings a wonderful new perspective and a ‘can do’ approach,” said Betsy Neuville. “She has already gone above and beyond to give our initiative a strong start, and we are proud that she has brought her diverse experience and education to our work.”

Bindu can be reached at:  bsengar@keystonehumanservices.org

We are delighted to have her on board!

Leaky Roofs Matter: The Strength of a Metaphor

12 people from 3 different organizations – The Hans Foundation, Keystone Human Services International, and the Rural India Supporting Trust – joined together this month for several days to see how we could envision and describe an India where everyone belongs. When we say everyone, we mean everyone, and that includes people experiencing disability. This experience of capturing a possibility, or a guiding star, is the work of the heart, work which will soon require us to put our heads to our work, and then our hands to move towards that vision.

vision

 

As I find is often the situation with any creative process, we sometimes struggle with putting words and images to big ideas and complex, important notions. Sometimes, when this struggle to convey happens, someone can frame that idea into a metaphor of sorts. When this happens it is a wonderful and powerful gift to the process, and one which captures the essence of something to allow that ‘big idea’ to be harnessed over and over again to quickly and easily be recalled in all its nuances.

During our meetings, we had a discussion to discern our shared guiding values and beliefs about the work of helping Indian people with disabilities to experience full, rich meaningful life. General Surinder Mehta, the CEO of The Hans Foundation, offered a rich story to us to illustrate several critical points and realities about working with people who have often been betrayed and forgotten. It involved a family living in deep poverty who was visited by community workers who wanted to help. Instead of replying with great thanks and appreciation, the family responded by indicating that they had received many offers of assistance, and yet, their immediate concern was the roof which was leaking in their small, cramped quarters. It was the rainy season, and the wet was causing sickness and misery within their family. They noted that this situation had persisted for a very long time, while a host of well-meaning social workers and passionate charity organization representatives, government workers and politicians had come and gone, come and gone, come and gone again. All meaning well, all making promises of great changes to come, all good people. Promises from government programs, new initiatives and schemes have come and gone, and yet the leaky roof remains.

One of our planners gave this parable a name – “Leaky Roofs Matter”. It has become our working shorthand for a number of important and connected issues that relate to the work these three organizations are doing together.

The first issue has to do with the notion of “first things” – we often refer to this as “most pressing need”, and it is important guidance to any organization trying to make life better with and for people with disability. This means that some needs that people may have are more important that others, and it is fruitless to try to address other needs until that need has been met. A common example we often find in services to people with psychiatric disorders, or mental illness, is that the most pressing need people experience may be crushing poverty instead of the mental disorder they are said to have. As a result, this “fundamental attribution error” can cause us to waste people’s precious time and lives in all sorts of therapies and with all sorts of drugs when the condition may be intractable until the person is relieved from the some of the brutality and stress of living in poverty. Just an example, but one which is ubiquitous.

The second issue has to do with loyalty to the person impacted by the issue. As the good General noted, we simply cannot lose sight of the man or woman on the street – this means that whether a measure is focusing on the individual, community, or societal leave, we must not lose sight of the vulnerable person and their family. A program is only as good those working on its behalf see those it serves as much like themselves.Its leaders and workers must try continuously to see the world through the eyes of vulnerable people as much as is possible. Sometimes this means we have to make ourselves (and our associated organizations) small so the people we serve can be big.

Lastly, and perhaps most importantly, “Leaky Roofs Matter” implies that we must keep our promises. Vulnerable people have been promised change over and over. The charity mindset implies that the people who are being helped should be grateful for anything and everything that is given to them, whether it is what they need or not. The medical mindset implies that people will “become well” from treatments or service. Predominant service models of congregation and segregation imply that people will gain belonging and safety from being put apart and away from typical people and community. None of these widespread mindsets have consistently met people’s pressing needs, and yet they rage on in practice and theory. If we are to use a different mindset, one where we listen carefully to people with lived experience; one where we see individual people and families as unique, with a unique set of experiences, gifts; and one where we and stand by with and for vulnerable people, we are likely to chip away at the mistrust, suspicion, and weary sense of resignation that our biggest and best ideas are sometimes greeted with.  As our friends and colleagues Norman Kunc and Emma Vanderclift say in the Credo for Support with wisdom, “Do not work on me. Work with me.”

Thanks to this metaphor, all of the above issues, which might be powerful enough to build an organization on, or at least a  coherent service design, are now available to those of us working in concert within our initiative in India in nearly ‘total recall’ by saying three simple words, “Leaky Roofs Matter”. Those three words are now a strong safeguard and a potent builder of culture.

 

 

 

 

 

 

 

 

 

 

 

Trust the Process, Trust The People


One of the major themes within my own teaching and workshop content via Social Role Valorization theory and the field of human learning that is so relevant to each of us is the importance of imitation and modeling as “hands down” the most powerful force there is for both teaching and learning.

Like it or not, we model the behavior of those around us, and learn by watching and imitating.

This is one of multitude of compelling reasons why separating and congregating people with similar competency impairments or disabilities usually spells trouble for people. We can argue well using civil and human rights to freedom from segregation, using the image damage that is done when devalued people are gathered together by others, and we can argue well knowing what real danger vulnerable people face once society gathers them all together, apart and away. De-individualization, mistreatment, and brutalization is nearly always the result, despite what are often the best of intentions.

Here, though, I am thinking only about the practical issues of role modeling in my own experience while conducting the first KII  learning event here in India. I had a powerful dose of it this week. A small school and vocational training program located here in New Delhi, agreed to allow Keystone Institute India to “pilot” a brief workshop/event in their program, gathering together over 20 family members of children and young adults with autism. Who better to kick off our work in India than Thomas Neuville and myself, seasoned international educators? I had a game plan, prepared relentlessly, and brought lots of impressive handouts and PowerPoint slides, ready to inform and educate right off the bat. About 45 minutes into the workshop, a courageous mother spoke up loud and clear, and let me know what I was offering was not what she needed. Recommendations were made to change things up, and so that is what we did. Within 5 minutes, paper was on the wall, and we were all engaged in a lively and robust debate about the current realities for people with disability and their families, what our vision was for the future, and what needs to be done to move that vision forward. The ideas and analysis was captured in a visual way, and I was even given a second chance to wind the ideas I had intended to teach into the work, this time with good result.

Lessons, lessons, lessons, and it is I who am learning from them.

  1. People’s time is precious and it matters.
  2. People should be given what they really need, and simply because we have a tool to offer them does not mean it necessarily meets their need.
  3. When people show us that what we are giving them is not meeting their needs, we need to bend, change, listen, and do something different.
  4. We should speak up and out with courage when we discern our own needs.
  5. People need to know others well and listen deeply in order to try to understand what is really needed.

In the space of a short workshop, we have so many learning parallels to how we must think about human needs and the needs of people with disability. Listen, observe, learn, respond. Sometimes sitting at the feet of those with lived experience is the best role modeling we can do. If we just implemented the above 5 notions at the core of human services and programs, that would be a good start to effective and relevant service. All role modeled by one woman who spoke up and spoke out.

Partnerships Amplify Efforts and Actions toward Inclusion

Partnership is an amplifier.  It multiplies possibilities, stirs creativity, pools talents, and makes us able to accomplish more than any of us ever could on our own. It can also humble us, makes us flex and bend, and can prevent us from narrowing our vision. When it comes to serving vulnerable people, partnership has a deeper level of meaning and impact. Partnership is only as valuable as the direct and indirect influence it has on the lives of people we wish to benefit.

Our first two weeks after opening our office in New Dehli has been full of new experiences, connections, and re-connections.  This week marks a much-anticipated planning retreat to be held over the next three days with The Hans Foundation leadership and program staff, and Keystone leaders.   In it, it is our intention to amplify the unique synergy and shared values that have drawn us together from our first meeting over 2 years ago.  Through our work in January traveling across India with THF staff talking with and listening to people with disability and their families and advocates, to our work studying the less formal community-grounded supports in the Republic of Moldova alongside THF staff, we have each grown from our work together. It is time to translate that growth into action.

Now is the time that we must turn our attention towards our combined impacts on people with disabilities and those who care about and for them. Our gathering begins tomorrow, and extends over the next three days. It is our intention to strengthen our commitment to our shared initiative, expand our vision, and think with clarity about the ways our work will impact some of India’s most vulnerable people.  Partnership has a payoff, and it matters.

A Measure of Humility and a Little Grace

Betsy Neuville and Genevieve Fitzgibbon arrived in New Delhi last week to launch major programmatic initiatives in the inclusion of people with disabilities, particularly developmental disabilities and mental disorders, across India.  The first few days of work shed a small light on the experience of being different, and the need to find allies and supporters to walk the journey together.

Our initial work here in India has already proven to be the source of many lessons which will likely serve us well. As Genevieve and I enter into a vastly different society, with different rules, norms, ways of doing things, and unfamiliar and confusing ways of interacting and relating to others, we get an infinitesimally small experience of what it must be like to be living  next to the typical world, but not fully part of it. Although uncomfortable, it is an experience worth having, and one we will do well to keep close to our hearts and minds as we begin to do the hard work of walking with people with disabilities and those who care about them to create belonging, build strength, and push the boundaries of Indian society to include all.

Of course, we should be careful to compare the experience of two seasoned professionals with a host of valued roles making their way in India with resources and a network of supporters both here and in the US. We also should not pass on the chance to capitalize on our small and temporary experience—a tiny taste of being obviously different from others, having a hard time communicating with others, and experiencing the relentless stress involved in being confronted with situations where everyone seems to know what is going on except you.  For us, the experience of being unable to do things quickly and easily is frustrating and consumes a lot of energy and time.  I tried to explain to my husband, Thomas, how busy we have been this week, and all that we accomplished – setting up phone service, equipping an office, negotiating currencies, working with a myriad of workers, repair persons, drivers, etc.  It seemed like a short list, until he reminded me of the simple fact that, when we are operating in situations where we don’t “belong”, things are exponentially more difficult and our competencies go way down.

Important reminder, that people with disabilities experience continuously, isn’t it? One of the takeaway lessons is that, in order to enter into the world, others who agree to walk beside you, connect you, and simply stand with you make things happen.

So here in New Delhi, our wonderful “landlord family” who lives upstairs from us, has taken us under their wing and assisted us with finding everything from good places to shop to taxi companies that are trustworthy. They have connected us with bankers, grocers, and provided all types of support.  They keep an eye on us, stopping in, inviting us for breakfast, welcoming us with plants that periodically show up at our door, lovingly cared for by the elder botanist grandmother.  One small connection with one family, and the ability to negotiate life, get things done competently, and we become daily more competent and able to manage.

This little magic sparked by a family—Dr. Al Condeluci called these types of connectors ‘gatekeepers’ in his book “Interdependence”— makes the seemingly impossible possible. They also make a connected life visible and real. I’ll take this lesson in grace, humility, and the power of human connection in making all things possible forward in our work here in India.

Seeking the Way: Establishing an Educational Institute on Disability, Community, and Innovation in India

With a deep sense of responsibility, we are establishing the Keystone Institute India (KII) and beginning a process of capacity building, education, and sharing. After over a year of exploration and discernment, Keystone Human Services International has begun a collaborative partnership with The Hans Foundation to strengthen the inclusion of people with disabilities in community life in India. This partnership establishes an educational institute on disability, community, and innovation.

This national institute will provide training and consultation related to the creation of responsive community supports for men, women, and children living in India with a disability. It will also focus on supporting individualized alternatives to congregate care and institutionalization.

Over the next three years, KII will work with others who care about the well-being of people with disabilities: their families, advocates, allied organizations, and those with disabilities themselves. The focus of this outreach is to improve the lives of those with disabilities by bringing communities together and developing responsive community-based supports. This outcome will create an environment where people with disabilities will have a home, friends, family, work, and meaningful roles in their communities. It is both a joy and a great responsibility to continue to be a small part of the important work of creating a world where all people are valued. We will share our work, our progress, and our challenges with our colleagues, partners, and those who are walking this journey with us. We invite your dialogue and conversation as we go forward.