The last few years have been overwhelming: the purges, death threats, isolation, humiliation, the overall initiation into the marginalization of dis-ability, the shutting down of the server my blogs were on, the reestablishment, post by post, image by image of the entire chronicles, the invasion of our home by 14 armed members of the Los Angeles Police Department, the confiscation of our property, the legal costs, ongoing health problems, the deaths of my father and Barbara Franklin, a close friend, several hospitalizations of my son, moving twice, finding a place to live, restoring an old house, becoming part of a neighborhood.
I started this blog: “In Bed With Frida Kahlo” to provide resources for other people with dis-abilities (pwds), and to speak to the overall experience of dis-ability; a source of identity and self-recognition for other pwds, and a way of exposing pwods (people without dis-abilities—aka the temporarily able bodied) to the realities of the daily indignities of dis-ability. *
People who know me, know I hate new age-y platitudes. I didn’t always. I invested time, money, hope, dreams and even my reputation on the illusion that positive thought and following one’s dreams would inevitably bring about a positive solution. “Do what you love, the money will follow.” “Follow your bliss” “What would you do if you thought you couldn’t fail? “ In the case of the latter, fail publicly, repeatedly, and to the detriment of my integrity and reputation, not because I intended to let people down, but because my expectations and my belief in that mythology were not in alignment with either my financial or physical realities.
The Annenberg Space for Photography is an amazing space, but thought alone did not create it. It took the wealth of the Annenberg family and lots of hard work to make a wonderful idea, a reality. Daily life and its demands and limitations are very different for those with money and those without. Life moves more slowly for those with fewer resources, slower yet, for those with options limited by both physical and social barriers.
It took two years for Andy and me to make a home together, to finish most, though not all the work on a very old house, that in the L.A. housing market, we barely squeezed into. I started projects, and then found myself overwhelmed with the minutia of life—the daily tasks, the unexpected emergencies, the requisites of responsibility to others, that would interrupt my work and delay responses that events demanded.
So here I am, in the present moment. Most of the past is behind us. I know that sounds funny, but this month I finally caught up on the finances on quicken: everything is categorized, documented, accounted for. We can finally really make a budget, plan our future, keep track of spending in the present tense. It is a huge load off our backs. The blogs are up to date, for the most part. I have a place to work, to stack my books on shelves, to file papers for research I’m doing for upcoming essays.
The transition to dis-ability happens faster than I can write. Hopefully now, the space and time exist to allow me a current response. Two humiliating events occurred this week, which is not uncommon for a pwd. Not uncommon at all! I hope this weekend to sit down and write my chronicle of the events. I don’t feel I have years of work looming over me like a tidal wave.
There’s some delay in writing these stories. It takes me awhile to understand what happened. There are so many nuances to dis-ability discrimination, trauma, shock. I am also, often too humiliated and ashamed to look at what has happened to me. I’ve done enough victim advocacy to know the fallacy of that thinking, which helps, but doesn’t remove the stain, stigma or injury, totally.
I also know the risks of writing about dis-ability discrimination—the common assertions- “What did she do to bring this upon herself?” “Is she lying?” “She’s probably just trying to get attention.” “She must have done something to contribute to the situation.” “She’s loud and demanding and she got what she deserved.” I’ve been told all of this, by human rights activists, educators and social service providers, even.
As Audre Lorde said:
“I write for those women who do not speak, for those who do not have a voice because they were so terrified, because we are taught to respect fear more than ourselves. We’ve been taught that silence would save us, but it won’t”
“My silences have not protected me. Your silence will not protect you.”
But the biggest obstacle to writing has been time and the responsibilities of life. Writing is process, there must be a space, often a ritual, and the muse must be courted. The drama of the last few years, the unpredictability, the danger, all had to take priority over the reporting of events. I never wrote about the airline flight attendants who refused to let me use the restroom at the front of the plane, refused to hold my place in line for the bathroom at the back of the plane, while I waited my turn in my seat, instead of standing, and ridiculed and humiliated me as I struggled to reach the back of the plane, while they denied me the use of the airline wheelchair that is mandatory on all flights, forcing me to collapse onto the floor until the line dissipated. I never had time to write about the numerous social service, educational and health care personnel who openly ridiculed me in front of my son instead of providing the services they were required to provide my family. I didn’t write about repeatedly humiliating experiences in Whole Foods, and other yoga beautiful establishments, including farmers’ markets, where dis-ability access is denied or impaired because our presence is seen to diminish the cachet of the establishment. I never wrote about the repeatedly miserable experiences I had in theaters, including one theater where, without even an introduction, one employee, after I had found my way to my seat, grabbed my walker (as per theater policy, apparently) because it took up too much space. (No similar demands were made of tall people for taking up too much space! For pwds, our ambulatory devices are our legs. Without my walker, I would not be able to access the restroom during the performance if need be, or get to the restroom in a timely manner during intermission. I would have had to wait patiently for this brutal matron to return my legs to me, on her own timeline, on her own accord.) Unreported were the numerous occasions where Andy would repeat something I had said, to be praised for the great idea, that seemed to go totally unheard when I made the same point, or where I was accused of being rude, and he was praised for being courageous, brave, outspoken. Good gimp gurls must be quiet!!!
And I never wrote about the human rights activist, who yelled at me for running into her with my scooter, when she backed up without looking, and then chastised me for driving inside a public building.
So now I hope to have the time, the space, the clarity to write, in the present time, not catching up with the past, but writing what is happening now, in the life of one crippled gurl guerrilla gimp, out to take over the world, one wheelchair ramp at a time.
*I hyphenate the word, because disability is subjective. Little people are considered dis-abled, but tall people are considered enhanced. The deaf community does not, in general recognize deafness as a dis-ability at all. It really comes down to social values of what is desired, what is rejected and what is normative. If some people had wings and others didn’t, those without wings would be considered dis-abled.