Only Anecdotal

The hospital was busy when I walked in, the familiar professionals all gathered in their huddles as I walked past and found the room number. The son of my first call peeked his head around the curtain when I knocked, and I waited as he discussed his parents’ care with the doctors who were already there. Another family called my office, and a message arrived on my cell phone, running late, child sick, will be at the hospital soon.

Hospitals are hectic places nearly all the time, except in those moments of seemingly infinite waiting: waiting for a change, a death, a birth, a room somewhere else. Working with crisis is difficult, but in a hospital the notion of normal is flipped–because it is the designated separate space we have created within our society to cope with emergencies, with the events that so often are the catalyst for enormous changes within our lives. But within the institutional setting, the “abnormal” is normalized, categorized, redefined to fit within rules and structures imposed perhaps at first to lessen the chaos, but sometimes it seems only to tighten the control. Contained, life’s catastrophes seem nearly manageable.

And indeed, last Friday, the families were facing health crises that will change their lives. In these particular cases, the accidents and illnesses may have been one more thing, the defining moment of acceptance that, yes, this is important, our lives are not what they were. We must do things differently when we leave.

I was thinking about this over the weekend, the notion of life-altering events and our definitions of “disability”.

My agency held its first gala fundraiser on Friday, an event that reminded me of the many people who have fought so hard to redefine “normal”–and more than that, to open the world to people who by some stroke of bad luck find themselves separated from the rest of the world because of a body that in some way does not work the way that most people’s does.

When I was younger, I read Foucault, looking at notions of power and sexuality in literature. In so many ways, analyzing things I was reading seemed so detached from ordinary life, but Foucault’s lessons were vivid reminders of how our organizing of the world has created so many barriers to people who do not fit within the confines of what we deem acceptable. His discussion of the dehumanizing aspects of the medical regard (translated to “gaze”), come to my mind each time I think of the harm that has come of seeing the human body as a separate entity from the human being it contains. The very origins of the independent living movement reject this “medical model” of disability, too, as it sees disability as a problem to be fixed, rather than seeing the whole person and his/her individual needs around life itself.

I am inspired when we have moments to reflect on the courageous moments in history, moments that someone like my own boss Paul Spooner spent chaining himself to inaccessible public buses, or arriving to rescue someone from an institutional setting. I am so glad that my job was created, not to rescue people from nursing homes so much as to keep them from ending up there to begin with.

At the same time, I find myself still frustrated at the barriers that still remain, mostly the financial ones, but the lack of accessible housing and transportation and employment, as well. As I walk into crisis day after day, in the temporary institutions that are hospitals, I keep thinking that there must be a better way to fold these events better into the context of our lives, to expect it, and to adapt to the changes that come, so often. This will never be accomplished without listening to the people who need the services and accommodations, and I will continue to fight for this as long as I need to. It is good to know that so many amazing people have paved the path already.

And in a sad moment this morning, I remembered yet another person who inspired me and helped me numerous times in my work to bridge the gaps in the very face of crisis situations. I have written before about the Neighbor Brigade, a volunteer effort organized town-by-town to help people with the very stuff of daily existence that is so hard in an emergency health situation. Neighbors helped many of the people I saw with things like rides to visit a recovering spouse in a out-of-town short-term rehabilitation hospital, with hot home-cooked meals, with a visit to a pet or a plant. I was always stunned by both the generosity toward people who needed help, but even more by what the opportunity to help out gave to the volunteers themselves. This is the stuff of community, and it was created by a woman named Pam Washek, who herself was diagnosed with cancer at the age of 36. After she recovered, she made it her mission to help others in the situation she had been–many without strong support networks. The last time I talked to Pam, she was on her cell phone on a Saturday afternoon, calling to let me know that she had found a ride for a woman… It was July. Little did I know that she would become sick once more about a month later.

Pam died yesterday.

Pam, I hope you and your family know what a difference your life made to so many others.