By Leslie Freeman
I am writing this as I wait to address, via Skype, an audience of state and federal disaster planners, non-profit workers, first responders, and fellow disabled people at Portlight Strategies’ Getting It Right Conference on Shelter and Transportation Accessibility. I wish that I were at the conference in person, along with Unfiltered collaborators Syd London, Millie Gonzalez, and Milagros Franco. I am with them, and with all of the Unfiltered community, at heart and in spirit, but the physical absence aches.
When we first embarked on Unfiltered, my idea was for Syd London to document my traveling experience, with my PA and my crip sister Michelle Mantione, to the Portlight conference. Syd’s goal became to document a bunch of us crips together, to illustrate our access issues and connect them to the access and transportation failures that we experienced during Superstorm Sandy and hoped to prevent in future disaster responses. The project grew into something much broader and more far-reaching thanks to this collaboration, of which I am honored to remain a part. Ironically, some of the same obstacles that I had encountered, and internalized, during the Sandy evacuation of my Zone A neighborhood in Coney Island ultimately prevented me from joining Syd and my crip family at the conference in Atlanta. I want to name these and related obstacles here, in order to raise awareness of the similar obstacles faced by thousands of other New Yorkers, including returned veterans and survivors of domestic violence and hate crimes, who live with post-traumatic injuries.
Let me be clear: It is no small thing, to name the ways that trauma shapes our responses to disasters like Sandy. At the time of the storm, the population in and around the Projects on Coney Island included people who experience complex PTSD caused by wars, incarceration, intimate partner violence, and/or crime. When Mayor Bloomberg cut off the electricity and water to “encourage” people to evacuate the Projects, not only were low income, disabled people trapped in their buildings, but many were triggered by the isolation and confinement. Sirens and bullhorns patrolling our streets, ordering evacuation, surely compounded those triggers and further trapped folks with post-traumatic impairments. On Coney Island, at the far end of public transit service in Brooklyn, people trapped in their buildings were cut off for days from delivery of food or medication. Some people with cognitive, processing, and/or psychological impairments—people like me, with PTSD, with brain injury—as well as people with dementia, with cognitive delay—became ill due to *confusion* and panic.
Door-to-door checks, in the days immediately following the storm, by grassroots organizations and volunteers saved lives. Kind folks from the Occupy movement and its offshoots, already familiar with flexible, needs-based strategies, were often willing to listen to survivors who had been trapped, and confused or panicked. They listened through survivors’ struggles to communicate clearly or in what, under ordinary circumstances, might be understood as a socially appropriate manner. This patient flexibility was not always the case with grassroots volunteers, but was almost never the case in dealings between poor, disabled survivors and FEMA or the Red Cross, unless the agency workers had already been exposed to community-based methods and successes.
Though I was not, by the grace of good friends, one of the people trapped on Coney, I struggled similarly to navigate the aftermath and displacement. As I noted in my previous blog post, I take pride and find beauty in my visible, physical disabilities. I see my scarred body as unique, and rarely either limited or limiting. I recognize, and use to the fullest extent, my mobility privilege, walking or easily taking public transit everywhere I need to go. I also work my literacy and speech privileges overtime! But I labour to accept my cognitive and mental health differences, in part because I acquired these impairments more recently in a context of repeated assault; and in part because of the difficulties with awareness and communication that they present even among my closest friends. I’ve internalized shame about how much of my own and others’ time and energy it can take for me to process and sequence information, much less to process and appropriately respond to complex situations.
As long as I am in a low-stress environment, with support for self-care such as food, rest, meditation, and medication, I’m fine. Perhaps a little forgetful. Easily overstimulated and overwhelmed and hypersensitive. Sometimes, especially when I’m tired, I misplace familiar things in odd ways: my laptop recently went in the fridge! I get lost, even with GPS on my phone and maps. (Okay, I’ve lost six phones in the past year.) But add major stressors and subtract basic care… Imagine it this way: Have you ever been at a party, gone from buzzed to drunk too fast, couldn’t seem to get your bearings, yet you had to somehow stumble home? Do you remember how you felt when you finally found yourself at home, not entirely sure how you got there, your mind still slightly separate from your body? Did you try to piece together what you might have said or done along the way? That’s what was like to be separated from my routine, support system, meds and other coping tools, when I was homeless, after Sandy.
Just as the caring, attentive door-to-door checks by volunteers mitigated the chaotic circumstances of disabled folks trapped in the Coney Island projects, my chosen crip family helped me get to a safe place, from which I have been able to care for myself and my kids, and to give back to my community.
And yet—I’m not in Atlanta with my beloved cripfam because I became worried I’d be a burden to my companions. I was afraid, not without reason, that traveling with me would burn them out, unless I could afford a full time personal assistant to mange my meds and self-care regimen for the trip. It seemed too big a risk, to leave my comfort zone on our sponsors’ dime. No one told me I should stay home—in fact, my crip sisters encouraged me to raise more funds for care—but I was insecure about *wasting resources*.
I’m writing this here, now, because it reminds me of the obstacles faced by disabled people in situations of displacement, without the benefit of a tight-knit crip community, often with no ties to disability pride. It reminds me of countless times when I wanted to give up in the middle of a long protocol for accessing a new service, especially recovery aide and compensation from FEMA. It reminds me of trying to parse form after form; of scrambling a temporary address and ending up, tear-streaked, in front of a suspicious cop. It reminds me of the faces of women and men I’ve seen, half-asleep, half-dazed, on the streets of my old neighborhood. I cannot speak for others whose responses to Superstorm Sandy have been framed by trauma and post-traumatic injuries, such as PTSD and TBI, but I seek, here, to speak to them, and in solidarity with them. I’m writing as another way to bear witness.