Parisian Phoenix Publishing

Parisian Phoenix editor Nancy Scott and I have worked together now for probably a decade. She thought I might know someone who could help her manage her writing career, and I told her I’d just do it, and she protested that I probably had better things to do with my time.

But we started working together, and at that time she lived about four blocks from me on the way to my child’s school and in the same building as my banking office. I hadn’t been writing much at that point, my creativity on hold in favor of parenting and survival jobs. I wanted to do it because I knew Nan would motivate me as much as I helped her, forging a relationship not really competitive but certainly complementary–where she would say “you should write this” or “you should submit here” and my editorial skills would help her squeeze a too-long piece into a journal’s guidelines or hopefully serve as inspiration with our antics, one set of which was chronicled in “The Nail Polish Story,” part of the Not an Able-Bodied White Man with Money anthology.

Nan still motivates me and occasionally lectures me, in the maternal way, reminding me not to do too much, to be smart and to remember sometimes one has to say no.

The Launch of a New Video Series

So when Nan told me that she saved me an email and thought I might want to check it out, I listened. I registered both of us for the launch of the Disability Poetics video series through University of Syracuse. The series was funded (in part) by a three-year multi-project grant from the Canada Council of the Arts, curated by poet Kenny Fries, and featured ten disabled poets from a variety of perspectives.

The university is also home to Wordgathering, a long-standing disability publication that has published Nancy’s work. Nan reported that Kenny Fries was one of the first people to publish her, and that he has the requisite “serious poetry chops.”

Syracuse University offers a minor in Disability Studies as part of their school of education, in addition to some programming regarding disability and the law. One of the featured poets, Steven Kuusisto, is working on a joint-partnership between the university and the state government creating a program in disability entrepreneurship, The Inclusive Entrepreneurship and Employment Program.

The program will equip participants with information, education, skills training, and human support to help individuals with disabilities make informed choices about their careers and succeed in their chosen field.

— New York State Senator John W. Mannion’s Office

To learn more about the upcoming series:

Conversation from the Launch

Four of the ten featured poets attended the Zoom launch to offer insight on a panel moderated by Kenny Fries. Those poets were Naomi Ortiz, Cyrée Jarelle Johnson, Stephen Kuusisto, and Meg Day. Other poets in the series include L. Lamar Wilson, Sheila Black, Kay Ulanday Barrett, John Lee Clark, Travis Chi Wing Lau, and torrin a. greathouse.

A key question raised in the conversation, that “invisible illness” is a “misnomer” (because to whom is the illness invisible?), evoked the reality that while words on the page can be humanizing, according to Day, and that literature can be a tool to create empathy, this does not occur for the disabled.

It is hard for the able-bodied to imagine chronic disability and even more difficult to wrap one’s head around the pain felt by the disabled, said Johnson. Disability as an identity is a compounding of different features. Someone who is blind may have little in common with someone who has Lupus.

Our experiences do not overlap.

Genderqueer Deaf Poet Meg Day

Disability poetics is about the experience of the outliers, to paraphrase Kuusisto. And in his efforts leading the journal and the publishing house, Nine Mile, he seeks to give more voice to the disabled. (Something we’ve done quite a bit of here at Parisian Phoenix.)

Naomi Ortiz brought up the concept of complicity– to remain complicit in our medical treatment and our existence– whereas Kuusisto circled back to the concept of invisibility, not in the terms of whether a disability is visible but in certain societies in the world where the disabled are still hidden away and seen as a hindrance to the able-bodied or as bad luck. He prefaced this with a reminder that attendees are familiar with a post-ADA American disability culture and stated that his mother “didn’t want him to be blind.”

As a member of Generation X, and Nancy as a Boomer, we belong to generations still escaping the stigma of disability. If you look at the book Karen by Marie Killilea, you’ll see that disabled children of Nancy’s generation were still institutionalized despite our potential to be functional members of society. With none of the protections or accommodations in place today, Nancy’s generation paved the way for the ADA legislation and my generation, in my opinion, forced the schools and society to consider accommodations and special services in a mainstream environment.

As someone with diplegia spastic cerebral palsy, my family drilled into me a responsibility to “pass” as able-bodied, and I think Nancy would probably agree that her family wouldn’t take her blindness as an excuse. As someone from a socio-economic disadvantage (my parents are both high school drop-outs), I did not have interventions or medical treatment as a child. My mother refused to take me to doctors out of fear– in her experience the doctors only gave her bad news and they were always wrong. Or, perhaps more accurately, I proved them wrong.

So, I guess the point of all this disability poetics is to allow the individual and society together to grapple with this interplay of identity, ability, belonging and possibility; to face the struggle of living in a body labeled defective or “less than” (my quotes) and dealing with the discomforts of such a body; and to build pathways toward empathy and cooperation.

But as Ortiz said, “I have to navigate and touch the things that scare me.”