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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