Social work and some of its core principles i.e. social justice and advocacy are close to my heart. SJS appreciates when an individual in the community approaches us regarding an idea or issue that clearly meshes with these values. The interview below is with such an individual, Gary Dietz, who wants to further educate society about father’s experiences with their children who experience disabilities. His project has a unique approach in that it will be a book with a collection of personal essays and poems all about the male caregiver’s perspective.
Why you have chosen to write this book and why the focus specifically on fathers?
I am a father of a 13 year old boy who has an interstitial deletion of the lower arm of chromosome 13. That means that some of his genetic material is missing between some of his other chromosomes. There’s no fancy name for this deletion like there are for more common rare genetic issues. Read that again, it is indeed what I meant — some rare genetic issues are more common than others and the ones that are ultra-uncommon don’t usually have names.
In my parenting background, there was a distinct lack of formal and informal supports and information available to fathers of children that experience a disability. Also, in my decade plus of participating on and off in virtual and real-life support groups, I noticed how almost all the information is aimed at mothers and female caregivers. Whenever I tried start a conversation specific to dads, even when asking moms to reach out to dads, I was met with a resounding silence. Did this mean that there wasn’t a need (I found that hard to believe), or did it just mean that it would be exceptionally hard to reach dads?
I created a small “guerilla” market research program reaching out to other parents, genetic counselors, and other developmental and school leaders to see if (a) I was right, if there was indeed a need and (b) If their teams would have at least a small budget to pay for content aimed specifically at Dads, male caregivers and the families that support them. What I found confirmed my suspicions. Fathers want material and support, but they are extraordinarily reticent to go public with that need or provide input to materials from their own experiences.
While there are many first-person novel-length books about single-family odysseys and “father as a hero” approaches – and many of them are really great and very useful – there are hardly any collections of “everyday dad” stories that other fathers can learn from. And often, those stories don’t cover the hard to talk about or rarely-publicly-discussed feelings.
I am going to try and change that. I want to change that.
Who do you hope to reach and who is your target audience?
I am hoping the book reaches these key constituencies:
1. Fathers themselves. Father of kids with disabilities and fathers in general will benefit from this book. Perhaps they will get this book on their own or receive it from someone else.
2. Mothers. This book will hopefully allow moms to see things from a male perspective and open up lines of communication or topics for discussion and create greater understanding in families, especially families with a father who is reticent to share.
3. Other family members and caregivers. These folks, often in a “further outer ring” of the care circle when it comes to understanding men’s and father’s needs, will benefit from reading about these perspectives in an honest and unfiltered way.
4. Specialists. Whether social workers, speech therapists, PT, or OTs, or genetic counselors or psychologists or counselors or MDs – I have heard an overwhelming need for a book that can be given to fathers and families
5. Last, but not least, children that experience disabilities themselves (adult children or young children), as long as they are emotionally ready to read these perspectives. If that is the case, it could start some great conversations with dad and mom.
How can those who are interested submit an essay?
Essay submissions are open to anyone – any gender any background – and I can even interview you on the phone and write the essay reporting our conversation. The only limit is that the story needs to center around father and male caregiver issues.
You can learn more about how to submit and fill out a form (or email me directly) with the information you can find at the Dads of Disability blog.
If there are too many essay or idea contributions (and I can only hope that the input is so robust!) some of these essays may appear on my blog or in a future edition of the book. Alas, not all essays will be accepted.
Discuss your essay goals for the book
There is a detailed Frequently Asked Questions section about what the essays could be about as well as a sample essay located at the Dads of Disability blog.
In general, I am looking for stories surrounding incidents that happened at an inflection point in a family’s life: diagnosis, first talk with grandparents, first time child was called a name, first or last day at school, first job, first girlfriend, first time dad realized X, Y, or Z, etc. These stories do not have to be based on long incidents and I am not looking for “gripe” sessions or “this vendor was insensitive” stories specifically (although those themes certainly can appear).
Think of the themes and approach it this way: if you were to approach another dad in a waiting room or at a bar and he seemed upset about a certain issue surrounding his family and his child that experiences a disability, what story could you tell him about your life and experiences that would give him something to think about – a useful perspective to ponder?
Stories do NOT have to be written by a dad or even a man. They can be by a grandmother about her son and granddaughter. They can be by a young or adult child about their dad. They can be by professional talking about an interesting thing that happened with a child and a dad.
When do you hope to have the book ready for distribution?
The book is targeted for release at the end of March 2014, depending on the success of the Kickstarter campaign (which ends August 9, 2013).
The Kickstarter is an all or nothing proposition, so if it doesn’t reach its target, no backer’s pledges will be collected. I do have a backup plan if the Kickstarter doesn’t fully fund with a less ambitious first step. But I hope for your Kickstarter support and share of this project before Aug 9, 2013! And if you are reading this after then, for your support in creating awareness for the project and its Q1 2014 release.
How would one reach you to learn more about this project and submit their story for consideration? Perhaps discuss the editing process briefly and how essayists will be chosen to be included.
If you would like to submit an essay idea or indicate that you are willing to be interviewed for a story, please visit the Dads of Disability blog site to read the details and contact me through the form available there or send me an email.
I will acknowledge all idea submissions. You must be willing to have your stories edited by me and/or another I will use as an editor. I am looking to have a very diverse set of fathers and stories represented (by race, economic means, and specific disability). Honestly, at this point, the submissions skew toward Caucasian fathers with younger children with intellectual disabilities. I want to, if possible, include a wider range of father backgrounds and a wider range of disability and even include a few by fathers who themselves experience a disability, as well as their child. So, while I am still accepting interesting (and funny and sad and heroic) stories from all, I especially seek stories by, about, or relating to fathers and families of non-Caucasian background i.e., African Americans, Native Americans, Asians, Latinos or other cultures and ethnicities.
Small stipends will be paid, but they will be less if the Kickstarter doesn’t fund. Of course, if you want to submit and not be paid (as many so far have offered) that is fine too!
Gary can be reached at:
Twitter @garymdietz ( use Hash tag #dadsofdis)
A special thank you thank you to Gary for approaching me regarding this very worthwhile project. SJS would like to be kept updated on its progress!
By Victoria Brewster, MSW