“My Story

This book is my story. Well, part of it anyway. No one (at least not me) can write it all. Some I am holding back because I made a pact with myself to do no harm with this book (and in some places that was harder than I expected).
Some moments of history I can no longer recall (a side effect of a lifetime of dissociation). Sometimes I just could not bear to tell the truth publicly. I’ve shown this book, or parts of it, to many people. They’ve been intrigued, shocked, and/or laughed at parts of it—rarely the same parts.

Whether these stories will resonate with you, I cannot know. I only know that I am telling you the best truth I can at this point in my life.

These stories are not complete. I can only tell you what I saw from my seat on the late 20th century U.S. disability history bus. I remember details, and, as I’ve become aware, they are mostly about white people, about women and girls, and about disabled people. Those are the lenses I’ve worn.

If you are a person of color who was there, and/or you were not female when I knew you, and/or you were not disabled, I hope you tell your story, for we need more stories. The ones we have of 1970s U.S. disability history focus on white college-educated people with physical disabilities and their organizations. I am glad those stories are preserved, and I am deeply sad that those are the only ones that have been preserved permanently.

I am a unique package shaped by abuse and Irish history and immigration and the Boston superiority that spreads all the way down to the working classes.

I am a woman who was taught she was not a woman by virtue of her long steel leg braces, and ace-up high-top boys’ brown leather shoes (the better to accommodate the leg braces).

I was never supposed to be married, to have children—according to my family and community. At best, I was supposed to get a job, support myself, and be the spinster aunt to my siblings’ children. Being freed from the societal expectations of females created a wonderful recipe for letting me know that being a lesbian was a great option.

My writing buddy, Naomi Ortiz (disabled), laments the rigidity of books. What we write is preserved, critiqued and analyzed, yet it is only a snapshot of our thinking at that time. Hopefully, it is our best thinking, yet we know that it is and will be full of contradictions and half-formed ideas. A week after publication we will realize the importance of changing a now unchangeable sentence. That book will go into the world locking the writer into that version of the truth.

These essays tell my story of only one moment. Like a photograph, the point of view decides the story that is shared. The photo viewer never knows what lies outside the picture’s frame.

I share disability history with the others who lived it. We all had many different observation points, so our stories are necessarily contradictory. My filters allowed me to see and remember the white people much more clearly than the people of color; the women more than the men; the children more than their parents; the kind people more than the mean ones; the queers more than the straights.

I am a white girl from a white neighborhood who went to white schools and whose biggest historical achievement, the 504 sit-in, depended on the Black Panther Party from Oakland, California, for our success. I love the irony. I was taught to hate and fear powerful Black men, yet my survival, my first major political activist success, and my civil rights depended on them.

My history is messy. There are lots of contradictions, gaps, confusing realities. I connect best with people who are poor, yet educated; fierce, yet kind; strong, yet vulnerable. At my best I am these things, at my worst I am not.

I cannot tell you my stories of joy and surprise and sometimes even inspiration if you do not know that I also carry within me the shame of being viewed as a burden, a problem, an unexpected and unwelcome intrusion. I can craft stories of pride and community and impress you with my resilience and cleverness. But unless I draw back the curtain, you might believe that people like me, with impairing disabilities, live in the same world you do. But we don’t. At least I don’t.

My world is multicultural. In the mainstream world, I am a fat cripple. In the disability activist world, I am a queer. In the queer world, I am a dissatisfied disability activist. I am all of these and often none of these.

I have learned the academic skills demanded of white people, so I can participate in the educated upper-class white world. This saved me many times from being forced to live in institutions. I have learned the disability cultural norms that allow me safe passage through gnarly bodies and creative minds to the beauty and resources deep within. I learned the mannerisms of soft butch, to pass enough to get laid in queer communities.

I am all of these and none of these. I am encouraged by the members of these communities to believe that I belong everywhere, but mostly I know that I belong nowhere. Each of my worlds does not want the other parts present. So my stories are messy. No neat margins here. My life spills in too many directions to be contained. Sometimes I cannot be seen because my life overflows community boundaries. Other times parts of me lie invisible.

There are scars all over my body. The visible ones tell stories of surgeries to force my polio-atrophied muscles to obey, in the attempt to make me more like “normal.” After decades, my body rebels, tightens up and returns to its original polio state. The body always wins.”