Interview With Lyn Jones and Liz Whiteacre

WG: Your recent book Monday Coffee is subtitled "And Other Stories of Mothering Children with Special Needs." Can you talk generally about how this book came about and what your goals were in creating it?

LJ: This project was really a joint vision and venture. Liz and I are both moms, writers, researchers, and teachers, and both have vested and personal experience in the disability community.

Liz and I met in 2012 at the start up meeting of the fall semester at Ball State University. The new hires of ours, the largest department on campus, were announced and as the names of the faceless were read, I heard "disability poet." I looked up and made sure I knew what Liz looked like so I could catch up with her after the meeting.

We immediately connected, realizing how much we had in common. That first conversation on that first day led to more conversations and dialogue. We read each otherís works: Lynís recently completed dissertation titled, The Joyful Lived Experiences of Mothers of Children with Special Needs: An Autoethnographic Study and Lizís collection of injury and disability poems published in her book Hit the Ground.

Over the course of the semester during our coffee talks, we discovered that we had even more in common than disability. We understood each other as women, as mothers, as writers, as activists. We both talked about what we could do together, how we could reach out and share with other mothers and writers.

Liz read my dissertation and asked me what I was going to do with it. She said it could be and should be turned into memoir, into literary, into stories read. I was thrilled. Truth is that I was never satisfied with my dissertation that studied the challenges and joys of mothers of children with special needs. Itís an academic document that sits in a database and on a shelf and may or may not be read by other academics. Donít get me wrong, I know and believe I have contributed positively to the field. What little research about mothers had been done was mostly number data and conducted by the medical community who understood very little about us. But, I always hoped that those data stories I collected could be read and shared by real mothers. As one of my favorite researchers and writers Laurel Richardson at the 2013 International Congress of Qualitative Inquiry Conference "I discovered that I wanted to write for real people." And so with a nudge from Liz, this journey began.

Below is an excerpt from my blog where I detail more of my personal journey towards this publication:

I remember a consultation my husband and I had with our sonís neurologist, Dr. James Pappas, asking again for a diagnosis, prognosis, life expectancy–what will he do, what wonít he know, what should we do?

He sat down, part weary from our questions and part from the complexity of Willís case, and simply replied, "I canít tell you. Willís writing his own story." I wrote that down in the notebook that I always carried, went home and began to write down everything Will did or didnít do, recording his story.

Weeks went by and I kept rewriting that quote at the top of each new page. I didnít know at that time what I was going to do with it, but I couldnít stop hearing it and thinking about it. It gave me hope and purpose and it felt like it was an invitation. And then one day, it just hit me, very much a clichťí Oprah lightbulb moment. I was not just a mom, but a writer and maybe, just maybe there were other moms like me out there. Moms who felt guilt, sadness, and joy simultaneously. Moms who wanted to make sense of this challenging and wonderful thing, momming a child with special needs. Moms who needed to make sense and used writing to do it. Maybe I needed to tell my story too.

When Will was first born, I had attended and tried to participate in several support groups but they were usually disability specific and had guest speakers. My kid didnít fit one diagnosis and I wanted to talk to other moms, not another expert. At that time, with Will we were seeing nine doctors and four therapists. I didnít need anymore "expert" advice. So, I created the Indianapolis Special Needs Moms Writing Group. We came together and we wrote and continue to write today about the challenges and joys of being a mom.

It was because of Will that I started that writing group. It was because of that writing group that I became more interested in community literacy. It was because of my growing interest in community literacy that I changed my doctoral program and began exploring disability studies and narrative research. It was because of this research that led to my dissertation where I studied mothers.

LW: Lynís captured the genesis of the project, and itís been a pleasure working with someone so motivated and dedicated to helping other people find their voices and tell their stories. My daughter is neurotypical (I learned that label from Lyn), so this anthology project was an education for me. Regardless of what issues our children might have, I believe that we learn a lot about parenting and about disability when we talk with each other. Thereís much to be said of the stories and pieces of advice that are passed from person to personóthereís only so much that can be clinically recorded by health care professionals. Every child, every parent, every disability is unique. Iíve learned so much about parenting through working with the mothers involved with this anthology, and Iím grateful for this experience.

As someone whoís lived with disability, I also appreciate how candidly the mothers in the anthology discuss the journeys theyíve taken with their children and how disability has shaped them and their families. Iíve had moments in my life when Iíve been desperate to minimize physical pain, and this desperation has lead me to try unconventional remedies in the hopes theyíd help me heal. In talking with people during therapy, I learn their unique experiences, what works, what doesnít; Iíve gained valuable advice thatís helped me navigate my recovery and lead to breakthroughs that might not have happened otherwise. And I pass my experiences on to others newly injured to keep the conversation going. I think this anthology has a similar goal. In sharing their stories, these mothers are contributing to a conversation thatís important for everyone to be part of and engage with: what do we do when a child is born in peril? What do we do when a child is born with health issues that will present obstacles throughout his life? What do we do when this child becomes an adult and his parents are no longer able to care for him? What do we do? To me, Monday Coffee & Other Stories of Mothering Children with Special Needs presents a group of mothers who wrestle with questions like these on a daily basis and have taken the time to share their insights with the hope others will join in conversation and collaborate to discover solutionsófrom figuring out how to make a feeding tube work to how to negotiate health care to how to navigate awkward social situations.

WG: Many anthologies that deal with in-the-trenches experiences of people with medical or heath issues have an amateurish feel to them, but Monday Coffee seems to have a high degree of really quality writing. How did you go about gathering the writing once you decided to embark on the project?

LJ: In my dissertation study from 2009-2011, I gathered and read as many "moms with children with special needs" memoirs as I could. Most are individually written and self-published or are published by small Christian publishers. The stories were heartfelt, but needed an editor to improve the writing. Trying to research them for information and themes was cumbersome because they were not organized well and had no index. Many were out of print and difficult to even access.

There were a few published anthology collections and the same holds true as above or they were overly simplistic and only talked about the good or the bad of being a mom. And most were devoted to one disability, so only stories of Autism for example. There was one collection that was very good, but the contributors were mostly academists and professional writers. And it was compiled of one lengthy essay and after another with no real unification of the writing. Separate, excellent essays. But, I felt that the book was inaccessible to "typical" readers. And the title was concerning for me. I won't reveal it but I felt like it added to the hegemony of what we as mothers were trying to get away from.

As an academic researcher AND a writer AND a teacher AND a mom, several things were critical to me: First, that we produce a text that researchers could use, meaning it had to have a workable index; next, that it revealed all the ways in which memoir can be written: essay, poetry, and even graphic or photographic memoir; and finally, that it could be read by any reader including mothers of children with special needs, mothers with neurotypical children, anyone who supports or knows mothers of children with special needs like dads, grandparents, teachers, doctors, nurses, social workers, etc…

So, yes while there are memoirs and anthologies devoted to mothering and to mothers of children with special needs, there are none that employ multiple literary forms. Our book includes essays, poems, graphic memoir, even a theater script. And it illustrates the full and complex human range of emotions mothers experience including the challenges, our sense of purpose, our belief and sometimes anger at being chosen, our transformation, and most importantly and not always associated with having a child with special needs – our joy.

And the book is indexed so that researchers or people who serve mothers can use this book purposefully and hear what itís really like. And finally, and this is something that Liz and I are both proud of and worked hard on with our student intern Michael Baumann, the book includes pages of writing prompts. We invite anyone who reads this book to write with us. We want this book to be enjoyed as quality literary work, to be useful to other mothers in beginning their own writing to heal journey, and to be a teaching tool for those who serve and support mothers of children with special needs.

I will let Liz field the question about the writers, but will say that it was the first published piece for some of the contributors and some of the contributors are published authors. We let the submission call for themes and the submissions that supported those themes guide what was selected, not whether or not someone had experience as a writer. We wanted as Natalie Goldberg so poignantly reminds us, stories that were "from the gut."

This book represents an excellent exemplar of memoir, a human story with which we can all connect, and most importantly a piece that realizes the power of mothers.

LW: We sent out our call for submissions, which requested mothers respond to specific themes (these themes now organize the anthology: challenge, provident & power, and joy), to online forums and list serves that were creative writing or disability specific. And, people shared it around the world. I received many inquiries from people with questions because theyíd received the call from a friend or child who thought they might have something to share. We culled the writing that best fit the themes we hoped the anthology would explore as we started the process. There were many pieces that focused on childrenís stories or organizations, which were equally compelling, that we didnít include because they didnít have a focus on mothering.

WG: One of the things that is immediately obvious in looking over the table of contents is that there are no pieces written by men. Given that here in the twenty-first century an increasing number of men are the primary caregivers for their children this is an interesting omission. Was it purposeful?

LJ: Yes, very purposeful. For several reasons.

  1. The research and statistics support that the primary caregivers of all children are women and in families of children with special needs that is also true.
  2. My work with the Indianapolis Special Needs Moms Writing group has been with all mothers, women, and over the 8 years I have facilitated that group, I have witnessed that it isn't just about mothering children with special needs, but mothering and feminist topics in general. In the group, the writing and discussions produce stories of the roles and responsibilities that women and mothers live and experience so I wanted the book to reflect that collective female story.
  3. I have not studied fathers yet. I want to. It's my goal some day to publish a book like this but all stories written by fathers. But until I know what has been studied, what has been written by fathers, an idea of what they think and know and what the world to know, I won't.

Like any writer, I do my research first. I see where the gaps are or what needs to be shared. The research for this book was critical in shaping the call for submissions, in soliciting pieces we knew were shared experiences.

WG: In addition to the anthology itself, you have also set up a Monday Coffee blog. Tell us about the blog and how readers who might want to get involved can access it.

LW: Iíd love to talk more about the blog Monday Coffee & Other Stories, which readers can find at http://motheringkidswithspecialneeds.wordpress.com. Itís a companion site we set up to originally raise awareness of the book when it was released, but itís turning into a wonderful publication venue for mothers who want to continue conversations about mothering their children with special needs.

Topics are not limited by the themes that organized the book; as long as a submission deals with issues of mothering a child with special needs, itís considered for publication. This has resulted in a wide range of topics, and mothers who were not published in the anthology are starting to share their stories. At the blog, readers can find mothers talking about things like coping with feeding tubes or the holidays, tackling feelings of guilt, sharing things for which they are thankful, highlighting mothers and organizations they think are amazing, and more.

We invite anyone interested in participating to visit http://motheringkidswithspecialneeds.wordpress.com/submissions/ for guidelines. At the site, readers can also sign up to follow the blog, so they get posts when new material is posted. We also post regularly to Facebook (search for Monday Coffee Moms).

WG: I know that one of the motives for the creation of Monday Coffee – both the book and blog – was the creation of a sense of community among women who were raising children with disabilities, but since Wordgathering is interested in disability-related literature and the promotion of work by writers that we feel deserve a larger reading, Iím going to ask a rather tactless question. Almost everyone putting together an anthology comes across work that makes them sit up and say, "Wow, this really blew me away. I need to let others know about this womanís work." What were some of those moments for each of you personally as editors?

LJ: Great question. Several pieces blew me away, but will zero in on three in particular.

Barbara Crooker's "The Least of These Caregiving in America" because she speaks plainly, humorously, sadly, bluntly …honestly about the very real fear that we all have as mothers about the costs and what happens to our children when we die first. She takes us through ordinary events, places, and people that we all understand and then paints her picture very differently. It's part memoir and part political but also really unique. Her older voice is unexpected and is a welcome surprise in the middle. Her story speaks to any one in the disability field about the complexities surrounding caregiving.

"Torso of Clay" by Christy Boyer is the hardest for me to personally read because while my child has not died, his medical situation is much like her son's. Her writing is fierce. You have this anxiety as you read, you can't not be disturbed and yet hoping, hoping the story has some relief. And it does, but it is not presented like we want it to be. It's so raw and yet so powerful. She speaks with almost this in the moment, but yet reflective tone. We are in the scene with her cleaning up shit, but yet she is also helping us understand what it means at the same time. And she presents this long piece in a series of scenes. It's very haunting, yet beautiful.

I love all of the poetry, particularly Kimberly Escamilla's work, but I love the very simple piece by Dee Thompson called "My Daughter Sings." It's fragile and starts small and low and quiet and swells with joy by the end. Provides hope and joy and helps shift the book into different topics.

And of course as I have said before, I love the invitation to write. I am very proud of the prompts at the end. Liz and I want everyone in the disability community to tell their stories, to write their life. As a qualitative researcher and narrative nonfiction creative writer, I believe that story is critical in relating experiences and exploring and advocating.

LW: Iím going to pull the parentís prerogative, I canít pick a favorite, because in this case, itís true. We read these pieces dozens of times during the selection, organization, copy editing, and proofreading phases of the project. The pieces had me pulling tissues out of the box or heard me laughing out loud. During the fall, my daughter would arrive home from the bus and ask if I was reading that mom book again. (She was very supportive during the project, but I think she found the puffy eyes disconcertingÖ) I know whatís coming in an essay or poem, and still, it punches me in the gut because each piece is complex, so honest. And, Iím not even in the target audience. My child does not have a disability that influences how I parent and experience family. Iím on the periphery here, yet, Iíve learned so much not only about parenting, but also about how I want to engage with families I know who have a child (or children) with special needs. This book is an education for everyone. I think a hallmark of an engaging anthology like this one is readers can return to pieces and be stunned every time. Each read teaches us something different, and we walk away satisfied, with new perspectives, inspired to take part in the conversation.

WG: Lyn, you mentioned the prompts at the end of the book. Have you worked with those personally in writing groups or workshops? How did they work?

LJ: Regarding the prompts… Yes, I have personally written and worked with all of prompts. As the Co-Creator and Director of the Memoir Project at the Indiana Writers Center, I have created curriculum and tasks for about 20 different community agencies or groups. We work with many of these groups more than once so I have had to develop prompts that are specific to their memoir writing needs and that allow them to develop their writing over time.

For example, I am approaching m 9th year with the Indianapolis Special Needs Moms Writing group and my 4th summer with at-risk children so I am constantly gathering and creating ideas for writing prompts as I avoid repeating those topics.

The prompts that refer back to the pieces in the text are new and were developed as a team with Liz, our student intern, Michael, and myself. Liz took the prompts I had written or we had written and then titled and organized them beautifully into the sections you see such as "Warm Up," "Digging Deep," and "Starting Conversations."

Again, since we can't stand in front of these potential writers over multiple sessions and lead them through, we needed a way to reflect that these prompts can be used as a way to write to heal or craft something publishable.

I have a "hot list" or "tried and true" memoir writing prompts that work well and certainly many of those made it into this list.

WG: What has been the reaction to the anthology so far? What plans do you have for it? Will there be readings? Where would interested readers be able to get a copy of the book?

LJ: The response has been wonderful. Initial reactions were that people loved the cover and title which we worked very hard with our technical editor, Mark Latta to create. We released small excerpts of a few selections early on for our Facebook page and on our blog site to create anticipation. Liz can address that more–she is amazing with that stuff!

We had a book release event in November of 2013. It was well-attended, and three of the mothers who contributed came to read their works along with Liz and I. Other families in the disability community as well as local writers attended. As we read, there were tears, from moms, dads, and grandparents. It was very special for us to see that work finally elicit such an emotional response.

Immediately after the release, we had several positive reviews posted on Amazon and Barnes and Noble. The book is popping up on other social media sites and web pages as well. I believe (and I will check the numbers), we have sold over 500 units since November.

We had a second reading at a local, independent book store in December, the 28th, which is not an ideal time but we had a small group and another and a different contributing mom writer came to read with me.

I have a reading scheduled in Harrisburg, Pennsylvania in early April and a reading scheduled in late April in Chicago. And, Liz has had some so again, she can talk about hers. If we didn't have full time jobs and families, we could easily do more. The disability and writing community locally wants more. I have had several individuals and organizations ask locally in the Indy area, but it's just a scheduling issue. So, we can both do much more this summer and will.

The National Autism magazine, Autism Digest, is going to feature an essay in March or April that I wrote where I reference the book and in their book reviews section, the book will be reviewed. Temple Grandin is an editor, so this is a big deal to have our piece featured. And we were able to access wonderful reviews from two writers and a well-known doctor. Their reviews were much longer than what you see in the book and the endorsement was for us, a real nod that we succeeded in again, creating not only a quality collection of stories, but a quality collection of memoirs.

I continue to personally blog and reference the book. Interestingly, I have heard more direct feedback from the non special needs community, a group of educators at a school and a group of women at a church are all reading this book: one group for professional development as they work with children with severe special needs and the other a group of women who want to start writing about faith. I'm thrilled with their responses and I will be visiting both of their groups when they complete the book.

I do hope after March that I can get out to more sites. I believe readers are hungry for the stories in there. And I am working on setting up an event as part of a research symposium with the Peyton Manning Children's Hospital and Women's Hospital with St. Vincent's to conduct readings of pieces that particularly reference medical situations. I am working with two doctors and their staff to make this happen. And I just got a call this morning. I am doing a reading for the Fishers Art Council's Soup and Supper with a Writer series. I will be doing readings and sharing the book at this event this evening at the Fishers Art Council building in Noblesville, Indiana.

Folks can purchase the book directly from INwords, Amazon,or Barnes and Noble, or if we do readings, directly from us as we bring copies with us.

WG: Lyn and Liz, Monday Coffee is a great project, both in its book and blog forms. Before we close, is there anything else that you would like to add to what we have been discussing.

LJ: Social activist and higher and community educator, Phyllis Cunningham, self-assigned herself the metaphor of "spacemaker." Her goal was to create space for learners to learn so individuals would not only maintain that space, but be changed, so they can continue the cycle of creating space for someone else. For me, spacemaker is a cultural stance that encompasses all of the cultural roles because whether I am praying, mothering, studying, writing, or teaching, I am always seeking space not only for my own learning, but for others such as well. This book makes space. Jerome Bruner, psychologist and philosopher, says that the most poignant symbolic activity is the story form. Writing about our lives doesnít just record events, it helps us define and develop ourselves as human beings. This book creates the opportunity for mothers to write their lives and for those who read it to understand that life.

I just read a wonderful blog post by fiction and memoir writer, Dani Shapiro, where she talked about her process:

When I am working on memoir, I burrow deep into a small, dark place inside me, no larger than the head of a pin. This dark place contains within it all the sorrows and confusion of my life.

When I burrow into that place, it expands and becomes oceanic. It fills and fills the room in which I write until it is the air I breathe, the water in which I swim. It becomes everything. (para 8)*.

It is my hope that mothers, readers, writers will feel that everything, breathing that air and come through the other side, to the end, enlightened and transformed. And, I hope more people will make space for individuals living with someone or living with a disability.

LW: I must echo Lyn. Itís my hope too that writing about disabilities will continue to gain a wider audience and more participants. A lot of the feedback I receive for this collection starts, Wow, I had no idea _______, and I leave the blank because it can be filled in by anything from specific moments mothers share that stop our breath to how professionally written the pieces are. Itís surprising to me how surprised some people are because when youíve been consuming disability literature, this is nothing special. Thereís a great body of work out there that provides us a glimpse into myriad disabilities that is honest, raw, and invites conversation. I hope people who read Monday Coffee & Other Stories of Mothering Children with Special Needs will share it and will respond to the next call for submissions from an anthology or magazine, sharing their stories.

 

*Shapiro, D. (2014) Dear disillusioned reader who contacted me on facebook. Salon http://www.salon.com/2014/01/10/open_letter_from_dani_shapiro_dear_disillusioned_reader_who_contacted_me_on_facebook/. Retrieved January 7, 2014

 

Lyn Jonesí and Liz Whiteacreís Monday Coffee and Other Stories is reviewed in this issue of Wordgathering.