Father’s Day can feel a little strange for the fathers of broken children. Most of us feel a little broken ourselves. The reasons for that disconnect might not always be so obvious. The numbers are pretty clear; the primary caregivers for kids with disabilities tend to be mothers, and that’s just a fact. I suspect that mirrors neurotypical society, but the fact remains that many, many fathers of special needs children are on the outside looking in on the day-to-day lives of their kids, and often by their own choice. It’s a shameful truth, but one that does no one any good to ignore.
I hear it often. “I think it’s so great that you’re such an involved father!” I see the looks in the eyes of members of Schuyler’s IEP team, mostly from the new ones, when I walk into the meetings, and when I speak up, as if they’d almost expect to hear Schuyler talking before a father would. And I see the broad generalizations, even here. In a recent post, when I expressed my own self-doubts and admitted that Julie and I hadn’t fully faced some aspects of Schuyler’s disability head-on, one commenter just mentally adjusted that and turned it into how Julie is the strong one, no self doubts and no illusions, but me? I was just like this commenter’s husband, in denial and uninvolved in the details of my kid’s education and care. In her head, the narrative reads that way, and so it became my narrative, too. And she’s not alone.
Mostly, though, I get the opposite treatment. Some people treat me like an aberration. I’m like some bizarre extraterrestrial father who puts his daughter’s well-being ahead of his own, one who goes to all the IEP meetings and all the parent nights and the playmates. “Here is a father who gives everything to his kid, and puts her happiness ahead of his own! Isn’t that wonderful and weird?
Well, I call bullshit.
It seems like almost everyone has so much anecdotal evidence of crappy fathers who don’t step up on behalf of their disabled kids. But in the past two years, since my book came out and I began traveling around and meeting other families, it has been my honor and privilege to meet some amazing fathers. And I’m not just talking about the ones who show up to the IEP meetings and doctor’s appointments, either. I’m talking about extraordinary dads whose work on behalf of their own kids have changed the world for countless others, too.
Richard Ellenson saw a need for his son, whose cerebral palsy left him unable to communicate and for whom existing speech devices were inadequate for his particular needs. The device he created, the Tango, has been praised for its innovative design and success in social integration of AAC. Dan Habib turned his fight for full integration for his son into a celebrated documentary and an ongoing project at the University of New Hampshire, dedicated to creating and developing more inclusive schools. I’ve met extraordinary authors and advocates like Rupert Isaacson and Michael Greenberg. I’ve been in the company of some amazing fathers.
Amazing fathers, and yet they’re exactly like all the fathers out there who work tirelessly for their children with disabilities. What sets these fathers apart, in my mind, is that rather than trying to find a way to fit into our society’s narrow idea of what fathers are supposed to do, they’ve taken their talents and their abilities and they’ve forged into territory that hasn’t always been welcoming to them.
Plenty of fathers don’t do that. Is that because some of them are crappy fathers? Of course. But how many fathers respond to the low expectations of our society and our system, one that assumes that the mothers of these kids will be the ones who will take care of them? How many fathers go online to find information and end up on page after page of resources for Special Needs Moms? How many read the poems about how special those moms are, how hard they work and how they are the only ones these kids can count on? I know I see those sites and those posts. I see them every day, and even now, after everything I’ve said and done and written, after as many speeches as I’ve delivered and as many books as I’ve signed and as many IEP meetings I’ve attended and been a pain in the ass in, even now, I still hear the tiny voice in my head, the one that whispers “Your presence is not required. Your input is not necessary.”
Look, fathers need to get involved. Fathers need to step up and take on their share of the work. That much is clear. That’s not just in the disability community, either, but I believe it’s even more critical that it happen in these families. This isn’t an episode of Mad Men; the old models of fatherhood no longer work. I’m not sure they ever really did.
But there needs to be an accompanying significant shift in our societal attitudes. There has to be a change in how fathers are seen. Fathers of broken children aren’t volunteers. We don’t want partial credit just for showing up. And we don’t want a pat on the head. We want to be involved. And we should be. You as mothers and as society should have the expectation that we’re going to be, and with that, you need to be willing to step back and let our talents shine, let our unique perspectives contribute fully.
I think you might be surprised at what you get in return.
Robert Rummel-Hudson’s first book, Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press and was released in trade paperback in January 2009. We profiled him in June 2010 in honor of Father’s Day.
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