As of today, I have “two, two, two!” pieces I wrote on the front page of the main United States Easter Seals web page.
The first is a piece I wrote called 12 steps to find a good caregiver. The second piece is called 6 gift ideas for dads with kids who have disabilities. The second piece is NOT what you think it is. You should read it.
The backstory: Last year, I read Jeff Howe’s Money article Paying for Finn. It was quite a co-incidence that I picked up this issue at all, as it was the last paper issue of Money magazine mailed to me and I was so sick of being broke that I decided that I was done subscribing to mags for a while. And I was so busy, having kicked off my Dads of Disability project (I was in the thick of the animation for the crowdfunding), that I was cutting back on a lot of things.
I thought Jeff’s article was pretty good, so I started to Google him. The comments I found about Jeff and his article really upset me deeply. There were some horrible things being said about this guy that I couldn’t really believe were true. So, I actually called Jeff, and he actually answered my call. (Apparently working writers and professors are just like the rest of us, they even have day jobs and phones and stuff). We chatted, commiserated, and eventually met. (Jeff and his wife and children were gracious enough to have me over one morning for a quick visit).
He wrote a draft of an essay that eventually became the essay “The Measure of Grief” in my Dads of Disability collection. And this is the piece that was adapted into “The Language of Autism” that the New York Times Motherlode piece published yesterday. Jeff and KJ Dell’Antonia deftly shortened and adapted the piece from the longer version in my book.
(By the way, my book isn’t specifically about autism. The core disability issues and challenges in the book are wide ranging.)
The lessons: I think I have another book in me about the lessons I have learned since working with Jeff and over 3 dozen other essayists and poets around the world. So, in the up-to-date parlance of web content marketing, let me share a few of them in numbered list form.
- Stereotypes abound: A certain sub-segment of the radical disability community can sometimes stereotype and be scornful of other folks who are the very folks whose minds they are hoping to change. I accept this irony and try accept folks who write and advocate like this as an essential part of the mix; They are a group of people I need to learn from but who I don’t always have to agree with. Actually, this is a good lesson for society at large, not just for disability issues.
- Language and words evolve: Words are important, but people are more important. If I see a parent in pain or a young or adult child of that parent in pain, I have learned to focus less on how they are saying what they are saying and more on understanding if there is some way I can learn from them or help them. As I said in the introduction to my book, “And if there is unintentional offense, please let it start or continue a dialog, not end one.”
- Gender impact: There are gender differences in reaction to being a parent of a child with a disability. Yes, there are many things that parents of young and adult children experience that are common. But gender and cultural differences in reaction to disability abound. My book begins to address them indirectly through the words of a variety of fathers and mothers writing about fathers. But boy, this is a big topic.
- Experts disagree: This isn’t just about Autism, this is about disability in general. For every white there is a black. For every up there is a down. And every shade of grey and every altitude in-between. It is extraordinarily hard for a parent of a child with a disability to navigate social systems, medical systems, school systems, not to mention the plethora of fact and opinion on the Internet. It really is a lot harder to learn how to parent a child with an atypical challenge then it is to parent a child who is developing more typically.
- GATTACA could be coming, and nobody seems to be ready for it. I had the privilege of being invited to the 2014 GET conference in Cambridge, MA a few weeks ago. The speed with which genetic technologies and information is available is increasing at tremendous rate. If you think that regulation and ethics around the rise of the Internet aren’t keeping up with the technology, just wait to see what happens with genetic technologies in the next few years. The choice about terminating a pregnancy of an “abnormal” (I hate that word too) fetus — that’s just the beginning.
- Going broke, but saving a life: Speaking of money, if you write a book that gets some decent reviews, far too many people think you are getting rich off of it. Trust me, both the hard and opportunity costs of collecting, publishing, and promoting this collection of essays and poems over the past two years has me in some debt. It is different being a marketing person for your own project with your own money than doing it for a VC funded firm! But it was totally worth it. The book already literally saved a life. (I’ll write more about that another time.)
Best to all, and if you know a reviewer at a major publication that has my book on their “to do” pile (you know who you are), please poke them in the ribs for me. Or if a reviewer wants a copy, visit http://blog.dadsofdisability.com/reviewkit
An adaptation of Jeff Howe’s essay from my book just appeared on the New York Times Motherlode blog. More on this from me tomorrow, May 15, 2014 (here is the link). Which is one year to the day after I first posted Defending Finn’s Dad.
The editor of the New York Times Motherlode blog can’t be wrong. (Well, she is in New Hampshire after all!)
Rusty Earl is a Kansas-based filmmaker. He reviews Dads of Disability in this 2 minute video on Vimeo.
Dad’s of Disability Book Review from Rusty Earl on Vimeo.
Disclosure: Rusty send me this video review before he posted it, but it was not requested by me. Rusty’s essay “Boxes in the Night” appears in my book but Rusty didn’t see any essays (other than public samples) prior to him reading them in the finished book. Finally, Rusty declined any payment from me for his essay.
We’re in the homestretch! The book is planned to be publicly available and orderable in print and in ebook formats on April 15, 2014. (Copies to Indiegogo supporters and reviewers will be shipped before that.)
Below is the video that started it all!
And here is what Mr. Book really looks like! (This is a proof copy, and there will be slight changes before release.)
Dads of Disability Cover (click to enlarge)
All the best,
I watched Who Is Harry Nilsson (And Why Is Everybody Talkin’ About Him?) over the course of the past few days on the FlixoftheNet. And what exactly does this have to do with Dads of Disability?
First of all, among the many hits he wrote for himself and others, he wrote what I think is the seminal “Dad” song of all time: the theme from “The Courtship of Eddie’s Father.” You can listen to it here (OK, maybe “Cat’s in the Cradle” by Harry Chapin is better known and is a tie for “best Dad song.”)
Despite my son’s speech challenges, we can still sing that song together. He especially enjoys the silly “scatting”-like words at the end.
Secondly, the documentary shows that, despite Nilsson’s father abandoning him at age 4, he evolves to have deep relationships with a son from his first marriage and the children he had in his last. I think it is a pretty touching tribute to fatherhood.
Finally, it’s a great (if not a touch too long) documentary about a man whose musical influence usually goes unmentioned. Watch the doc, and you’ll see just how many of his songs you know and how many people he influenced. And how sad it is that we lost him so young.
Here is my holiday song about the “Dads of Disability” book progress. Sort of to the tune of 12 Days of Christmas, but not really. You can download some sample essays and poems here.
The 46 Entries of Winter
On the 15th day before Christmas, my essays and poets gave to me:
– 16 essays fin-ished
I'm pleased to say 16 essays are ready to go to copy editing.
– 9 essays on-deck
9 essayists are awaiting detailed edits and suggestions from me or writeups
of their audio interviews with me.
– 7 short pieces a-brewing
7 microstories/essays are on the way from me as interstitial pieces.
– 6 essays com-ing!
I am awaiting promised essay drafts from 6 writers (you know who you are!)
– 5 poems commmmmm-pleeeete!
5 winning poems from the poetry contest are chosen. One is in the sample PDF.
– 2 essaysssssss close!
Super close to going to copy editing!
– And a 1 fore-ward to put at the front…
And one foreward essay is forthcoming from one of two
medical professionals (or another who comes forward!)
And an “early” table of contents to whet your appetite (this not complete and not in the final order of the book):
Best to all,
Today, I am a guest blogger on Ellen Seidman’s must-read blog called Love That Max. Ellen is a powerhouse writer, editor, and mom. Check her blog out! And thanks to Ellen for being a great editor and allowing me the space on her blog. And to Heidi Kay at Pediastaff for introducing me to Ellen!
Also, today I am distributing a press release about the Dads of Disability project status. You can see it here in HTML format on the web or download it here as a PDF. Please feel free to pass it along to health, features, or other media editors you may know.
Have a great week,
I am happy to announced that poet and author Marly Youmans has picked the first Dads of Disability book poetry contest winner. The first winning poem is Adapted Views by Patricia Wallace Jones.
Patricia tells us about herself in this short bio:
Patricia Wallace Jones is an artist and retired parent trainer, disability rights advocate who worked all her adult life for rights she fears are being lost daily now. Daughter of a mother with a physical disability and mother of a son who lived a full and included life with intractable seizures, cognitive and psychiatric disabilities, she began writing poetry after retiring on the northern California coast.
In addition, Patricia has graciously refused the prize money and asked that it be put back into the book project. Thanks so much Patricia!