Explanation

I just returned from a short walk to the beach. Lara is off to a job interview, Jason is in Tampa golfing, Gabor is hanging out in Atlanta. I am alone - or at least by myself – for two hours with Charlie, Lara’s dog.

It is a blustery, chilly day in Tybee. Although the campground is filling up and tourists were everywhere on my little journey to the beach no one is swimming today. The tide is coming in with real surf – the kind of waves that indicate the undertow so many signs on the north end of the island warn swimmers about.

Everywhere there are signs of both devastation and renewal. Parts of palms and trees are scattered about and last night, when I got back to Avalanche at 6:00 PM, it was clear that the electricity had been off for most of the two weeks I had been away. Likely a big storm had passed through.

With the electricity off the fridge had been off too. Neither Jason nor Lara could stomach the job of cleaning up the rot and mold, but once again the generous staff of River’s End Campground came through for me.

At the same time vigorous new palms are growing through the boardwalk that takes me to the beach and – glory be praised – the tides of Tybee have already reclaimed much of the new sand that was carefully dredged up and laid down by the City Council in December, to extend this tourist resource out into the ocean. This is a celebration for me because once again I can reach the water’s edge on the blue and white striped runner that has been laid out by the same City Council so that wheelchair users can reach the ocean. Next week I will be able to stroll on the hard packed sand at low tide.

The gulls were flying low today. Two young pelicans flew right over me, a mere twelve feet above my head. I felt welcomed back.

I can only stay now less than two weeks – including three days taken out to do workshops in Macon and Atlanta – before it’s on to Ohio and Minnesota to finish the Tour. This fact, along with all the effort and sacrifice required to rebuild the foundation so that Gabor could return and Jason could join us, puts me in mind of why I came in the first place to this magical place. Why did I leave my home, spend my money and body, endure cold, accidents and illness, risk my funding for support, and strain my relationships with family, friends and assistants? Was it only to be with palm trees and pelicans?

I know the answer – I always have. But I realize that I have rarely expressed it in public. Therein lies the heart of most of my difficulties. As public as I appear to be I still have secrets that I hold to myself.

There are people in the world who are currently called “developmentally delayed” – they still are often called “severely retarded” in private. In my childhood I was frequently put with them because my support requirements are the same. From that early age I continue to experience a great kinship and communication with people who do not speak. I know that some of my greatest gifts are from this side of my nature.

At the same time I have a great kinship with people who do speak – the so called “normal”. I know that some of my greatest gifts are from this side of my nature.

My drive to build inclusion is very much rooted in my personal desire to live in a world where I am not required to pretend to be either one or the other. What sort of world would permit me to freely and responsibly be both a partner in a number of relationships with deeply caring, skilled and responsive personal assistants – to live the publicly intimate and vulnerable nature my body holds me in - and, in one time and in one body, be an intelligent, articulate, passionate, spiritually and emotionally strong woman?

I came to Tybee after decades of groping toward a better way to both ask and answer the question. Everything I have tried until last summer has led me to dead ends. In a world where either one is disabled or one is normal, if I am to have any measure of public freedom and safety I had better play to my normal side every time.

Of course I’m stating it too baldly. There have always been ways that I could find to live fully. But just the same the barriers still snap back into place every time. I could get a job, buy a house, start and lead groups and projects, make friends and colleagues, but the “me” who does these things doesn’t openly also get to be the “me” who lives in the intimate space occupied by those who usually don’t speak and who live through the will and care of others, contributing in return a spiritual and emotional connectedness rarely available to folks with bodies that support the illusion of independence.

In the year of 1955 I became aware of my spiritual commission to create a world where the silent could be appreciated for their gifts, contributions and being. In the year of 2007 I cracked – in the sense that it became unbearable to me to live and work in a world of jobs, private homes and private lives. Two other people – like me also labeled and working as token advocates in a service agency – suffered heart attacks within a year of each other, and one died. I took it as writing on the wall, and retired.

After more than 50 years of living to create inclusive society I was disgusted and discouraged with my lack of success. Much has changed and some of that change is even attributed to me. But my aim is neither to be famous nor to have a movement of change based on my thinking. I both want to be “we” and I want for quiet, unusual people to be appreciated and supported to contribute as full citizens in a real world of community – just as they are – not having to pretend to be as normal as possible.

I need to find another way to open the doors. Advocating, meeting, lobbying, resisting, fighting – these either are unavailable or can’t work for quiet, unusual people. We need our own way to transform the world – a way as vulnerable and intimate as ourselves. I want to discover, perhaps create, that way.

With the entrance of Gabor, the techno DJ, community loving, party seeking, closet intellectual, into my life a new version of my dream became possible. Gabor entered into conversations about transformation. He understood what I meant – even led me further than I intended to go – when I explained that inclusion is like inserting a disruptive rhythm into a well established beat so that the music isn’t stopped but is altered so that suddenly a new dance is possible.

And so the World Peace through Inclusion Tour was born. Gabor was up for it even though he risked working for four months without pay. I was up for it, largely unconscious of what I was risking, but desperate for a road out of futility.

It has been much harder than I could have imagined. The details are in this blog.

It also has given me a vision of inclusion that can succeed. It has given me the answer to my constant question – “What do I want to do with my life?”

So, no – I am not bent on a permanent vacation with palms and pelicans and I am not dangerously naïve and stubborn. I am looking for a path for those of us with capacities unrecognized in the world to achieve our full human stature. I think I may have found it.

Judith