What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

 
 

The Secret About Gatekeepers

I’m fascinated by this continuing and accelerating erosion of the control that traditional gatekeepers have held over our lives. Lots of observers, with various different axes to grind, continue to write about this.

Some note that automation, in the form of interactive websites and self-service gas stations and cash registers, is adding to unemployment. Or, at least, it’s eliminating jobs that don’t add value to what others have created.

Some point to the ways in which amateur online journalists are now providing a reality check on big media, and myriad other small operators are using technology to overtake the complacent Goliaths in our world.

This trend has casualties, but I think it’s empowering.

One example: When the time arrived for me to show What About the Boy? to the publishing realm, I found myself repeatedly bumping up against literary agents and acquisitions editors who claimed to see merit in my story but feared to get behind it. Some admitted to being unable to proceed simply because my name is not a household word. The book exists anyway because I realized I didn’t need them. 

“No one is going to pick you,” Seth Godin points out. But that’s OK, since nowadays you can “pick yourself.”

In short, power is shifting from big organizations to small, informal groups and individuals.

If you are a parent with concerns about your kid, which nobody is adequately addressing, this trend is especially good.

I think the ultimate appeal of What About the Boy? is its presumption that individuals have the right, and the power, to make decisions for themselves, as opposed to letting authority figures hand them a circumscribed menu of choices.

Now, this comes with the understanding that we may not always make good choices. (By the same token, my ability to publish this book does not automatically mean I can do it well or deliver a quality product.) Eliminating gatekeepers does not guarantee success. On the other hand, how often do gatekeepers facilitate success? How often are they middle men, at best? At least, when we take responsibility, the choices and the results of those choices are ours. If we care, we will do our very best, and will enlist real help where needed. It’s true that sometimes certain desired outcomes remain out of reach. Nevertheless, choosing our own response to whatever fate sends our way makes us less a victim and more a participant in the way life unfolds.

I see people doing this daily as I monitor online discussions concerning developmental disabilities.

A lady reports that her nephew is constantly walking on his toes, and that the parents are taking him to a podiatrist. This triggers a rather well-informed discussion of what toe-walking may indicate and how others have treated the underlying cause.

One parent asks about the merits of homeopathy. Another responds, “Did absolutely nothing for us.“ The first comes back for more details. “How long did you guys try it for?”

Yet another parent complains that her child is expected to wait a full year before the neurologist can see her. I am among those who step in with suggestions, and the collected responses make fascinating reading, both about the smartest way to get in front of a good neurologist and about what to expect.

What About the Boy? describes my family’s quest for help in the days way back before the Internet was available. We took our son to a doctor who acknowledged that he had major problems, but the doctor had absolutely nothing to recommend in terms of treatment.

We insisted, “There’s got to be something we can do for him!”

“Oh, there are programs out there for children like yours,” the doctor said. “But I’m not about to suggest anything. “They’re controversial.”

“How are we supposed to make intelligent decisions if we don’t know our options?” my wife demanded.

“Talk to other parents,” was all the good doctor would suggest. And that hint started us down a very long path.

Sometimes, I think, gatekeepers don’t even want that role. I think the more intelligent ones hate to find themselves in the path of highly motivated seekers en route to an objective. They know, and we know, that if they can’t help us along the way, they’ve got no business being there.

As always, comments are welcome.