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://dadsofdisability.com/reviewkit