“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 together 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.