What inspired you to start Pentimento?
I'm a long time reader of The Sun magazine and belong to not one, but two Sun discussion groups in New Jersey. What I like about the writing in The Sun is that it doesn't pull any punches. While some find that type of writing depressing, I find it honest. Around 2009 or so, I thought, wouldn't it be great to have a magazine like The Sun that was devoted to disability? That's when I began putting it together. Funny story related to that, I submitted a couple of photographs to The Sun in 2008 and received a rejection letter. A couple of friends of mine in The Sun discussion group had also received rejection letters regarding Sun submissions. So, I wrote a letter to the editor of The Sun stating I was going to launch my own magazine: The Moon. Though similar to The Sun in format, The Moon would give priority to all submissions that had been rejected by The Sun. I went on to say, “well, actually, everything I write and photograph will be included first; if there's any space left, it will be given to Sun rejections.” My letter was published in the December 2008 issue, and I received phone calls and emails from Sun readers wanting to help with The Moon. It was a tongue-in-cheek letter, but my humor bypassed some readers. And later, I actually did start a magazine.
What necessitates a journal devoted to writing by persons with disabilities and those associated with our community?
This is an interesting question for me to answer because of something that happened in the summer of 2012. I enrolled in an online English class -- Contemporary Fiction -- at a local community college. We discussed 16 reading assignments through an online discussion board. About halfway through the class, it dawned on me that all but one of the assignments were pieces written by men. The shortest piece was written by a woman (not that length is related to quality). I checked the class roster and determined about 60% of the class was female. I posted a question to the professor asking why we were reading almost all male writers when the class was 60% female. His response was, yes, the publishing world was and still is a good ol' boys network. I wasn't happy with his response and I ended up not completing the assignments. I emailed the professor and said I was tired of comparing one male writer to another male writer and that I hoped the young women in the class knew that greatness belongs to us too. I got an “F.” When I discussed this with friends my tag line was: I didn't sign up for a Contemporary Male Fiction class. And why are women writers relegated to a separate class at the college called “Women Writers?” So here I was complaining that women aren't integrated into the curriculum of college literature classes except as a separate course and then I start a magazine only for the disability community!
But I guess I feel there's a need for it. I didn't see my myself represented out there in the literary world, and I wanted a space where our stories, poetry, and art are together in one place. I was reading something today about the law of gradual progress and how small movements provide the foundation for something larger. Maybe the first step is a separate magazine and later is integration into the Contemporary Fiction class.
At what point in your life did you become a caregiver? What are your joys and your frustrations?
My son Kyle was diagnosed with autism around the age of 3. He's 20 now, still in the school system but the “what do we do with him after school ends at age 21” question is looming.
One joy is that he keeps on growing, changing. Years ago I thought he'd only get so far and that would be it, but that's not true. And these aren't big changes I'm talking about – it's little things, like using a word he never used before or putting on a coat to go outside on a 20 degree day without being reminded.
I don't know if I'd call this a joy, but I realized from Kyle that no one is “stupid” or “low IQ” or whatever you want to call it. There's something in all of us --a part of us untouched even though we may be constricted by the limitations of our bodies to speak or move. There's an “intelligence” that's always been there and always will be.
My biggest frustration is that caregiving is too much for one person and for many people one person is all there is. I'm divorced and my son and his younger brother are with me half the time. I have a 30-year old daughter who is married and lives in Maryland. I'm 55 and have spent 30 years working full-time and raising 3 kids, one with a disability. I'd like to take a long nap, say a two-year nap, but I can't. My father died a few years ago, and my mother lives alone now and she's 77. A male friend recently said to me, why not have my mother move in with me? My response was that's a great idea – I'm already at the edge of burn-out. Let's add another person for me to take care of.
What popular misconception about caregiving (among the ableist community) would you most like to shatter?
That we're not Mother Teresas. We're human beings who are entitled to the full spectrum of feelings, including overwhelm, frustration, disappointment, etc.
Pentimento is open for submissions through the end of March for the Summer 2016 issue. Submissions will open again in July for the Winter issue. You may subscribe here! And if you’d like to receive a free sample issue, fill out this form.