mcguire

Sophie got braces on her teeth last week. Knowing I had a solid hour with no (or few) interruptions, I settled onto a bench behind the line of dental chairs in the fancy orthodontist’s office, put my phone on silent, and lost myself in a book about a different set of braces — the ones on little Timmy McGuire’s feet.

“Some People Even Take Them Home”: A Disabled Dad, A Down Syndrome Son And Our Journey To Acceptance, published last year by Arizona State University journalism professor Tim McGuire, is a brutally honest, take-no-prisoners look at what it’s like to bring a child with disabilities into the world when you already know first-hand just how shitty things can get when you’re labeled “different.”

That’s one of the nicer things the bullies called McGuire. He was born with Arthrogryposis, which, as he explains in the book, translates from the Greek as “curved or hooked joints.” It is a muscle disorder. It’s no fun — McGuire goes into great detail in the book about both the physical and emotional toll brought on by two club feet, a bum hand and a “butt that sticks out.” It’s also very different from the diagnosis McGuire’s first-born son Jason received: Down syndrome.

Think too much about what it means when a scary-smart dad with serious physical challenges brings a cognitively disabled child into the world and it’ll start to drive you a little mad. I know. I’ve been thinking about Tim and Jason since I met Tim several years ago at a Starbucks near ASU’s Cronkite school, where he holds the title of Frank Russell Chair for the Business of Journalism.

For someone with such a fancy job description (it’s not his first — McGuire retired from the Minneapolis Star-Tribune as senior vice president) this man is wonderfully down to earth. I liked him immediately, and ditto for his book, which I barely put down all weekend. In it, he mentions our first meeting, and the desire to help people like me — with young kids with Down syndrome — understand what the rest of the journey might be like. Jason is now in his mid-30s, living in a group home in Minnesota near his older sister, who is a special education teacher. As I read the book (the title is a reference to a comment made by a doctor about infant Jason) I found myself dog-earing pages where I found similarities between Jason and Sophie — quips belying a wisdom beyond their assigned IQs; a desire to hang out with “typical” people rather than others with cognitive disabilities; and stubbornness hard to imagine until you’ve witnessed it. By the end, I realized I’d folded dozens of page corners.

McGuire and I have a lot in common, too — both high school debaters (I should have predicted that one!) and journalists. (It’s pretty clear he’s worked long and hard as an editor, evident in his acutely, sometimes painfully self-aware and analytical descriptions of both his and Jason’s childhoods.)

But there’s a giant difference between us, in that Tim McGuire is a total, 100 percent bad-ass. Through words and deeds, this man proves again and again that he’s just about fearless, and when he isn’t, he goes for it anyway. I am in awe.

He’s also amazingly candid, which I found refreshing in a memoir about special needs, a genre that often gushes about “angel babies” and calls Down syndrome “the Cadillac of birth defects.”

I must admit that I was a little surprised to see McGuire use the term “Down syndrome son” both in the subhead and throughout the book. These days, it’s far more acceptable to put the diagnosis after the person — to say “son with Down syndrome.” I didn’t ask Tim McGuire about that decision, but I’m guessing he’d say two things if I did: First, that as Jason was growing up, that was the common reference (a big step up from “Mongoloid” or “retarded”); and that second, if that’s your biggest problem — that someone calls your kid a “Down syndrome girl” — then lucky, lucky you.

I hope to someday meet Jason and his siblings (he has a younger brother in addition to his older sister) but more than that, I really regret that I never met Jean, their mom and the love of Tim’s life, who passed away last year.  I have a lot of questions for her.

To read more of Tim McGuire’s work (along with the book), you can go to his journalism blog, McGuire on Media or his personal one, McGuire on Life, Disability and Grief.

 

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2 Responses to “Tim McGuire’s Memoir is a Blunt and Touching Two-Fer About Life and Disability”

  1. This is a good blog post. May I suggest another book that’ has been around for a few years that was popular up hear Adventures in the Mainstream by Greg and Ned Palmer. Ned is Greg’s son with Down Syndrome. Unfortunately, I thought I heard that Greg has since died, but it is another good book!!!

  2. ordered today, thanks for the reminder

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