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.

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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.