For my inaugural post on this blog, I wanted to write about something that’s come to my mind recently as I’ve thought about my disability and my upcoming fatherhood. I’m calling this The Fluidity of Independence, or TFI, for short (if someone else has used this term, I have no idea, and I’m not trying to steal your term, I swear).
To understand what the fluidity of independence means, you have to understand that “disability” is an incredibly complex term.
There are countless disabilities, and various types of each of those disabilities, and various levels of severity within each specific type. You may know someone with spastic quadriplegic cerebral palsy, or even have it yourself. And there’s almost a 100-percent chance that that version of CP is different than mine.
As a result, I might consider independence the ability to drive myself to a sports bar and eat two dozen chicken wings with my buddy Pants, (while we pray silently for Ithaca College’s football team to please win the Cortaca Jug again before we die). For someone else, independence might be as simple as being able to dress themselves for work. All those things are a form of independence, and they are equally important.
But there’s another, more subtle way, that independence can change. And that’s what I’ve started thinking about as fatherhood approaches.
Some background: I grew up in the lovely town of Ithaca, N.Y. It’s a great place to live, but there is a major drawback. It’s a very hilly area, which is not always ideal for those with mobility impairments like me. The style of home popular in this area is also not conducive to being in a wheelchair.
Now, I grew up in a very loving house with my parents, Tom and Donna, and my brother, Mike, (all of whom you’ll probably hear about more in subsequent posts). I couldn’t have asked for a better upbringing, but there was one small issue. I lived in a three-story house. At the top of a really big hill.
This might seem counterintuitive to you. I know it is to a lot of people who see where I grew up for the first time. They naturally assume that I must have grown up in a one-story house with a layout suitable for a wheelchair. Actually, there were stairs in my house. Everywhere. Stairs to my bedroom. Stairs to the garage. Stairs to the third floor (which was the chill hangout spot when I was growing up, complete with awesome fake wood paneled walls and indoor/outdoor carpeting). Additionally, the bathroom doorways weren’t wide enough for a walker, let alone a wheelchair.
You might wonder how I survived in a house like this. The answer, of course, was independence. I had a family that wasn’t going to let me use my disability as an excuse for anything. I also had a team of physical therapists at the Franziska Racker Centers who felt the same way. So, despite my disability, I learned to be independent. I learned to walk using a walker, to climb up and down stairs using railings*, and to navigate the bathroom by walking without anything and holding onto things like walls and sinks.
*Later, with the help of my brother, I learned how to use those railings to jump down those stairs. In a completely unrelated fact, I have four sets of stitches in my head.
That was what independence meant for me, in a nutshell, for nearly a quarter-century. The ability to walk, both with and without a walker, and have a great life growing up because I could get around my house.
But there were also things I didn’t have to do growing up. I never had to take out the garbage, or do the dishes, or the laundry (I don’t think I could even get to our washing machine). I never had to bring in groceries from the car. We didn’t have a dog to walk. I was independent, but in a strange way, it was a limited kind of independence. Because my parents and brother lived in the house too, they could do those things for me.
Now I’m married to Ashley, a beautiful, caring, loving, woman. We have a dog named Banjo, who loves me almost as much as Ashley does. We all live in a wonderful apartment in Newfield, N.Y., just a stretch down the road from Ithaca, and it’s almost a polar opposite of the house I grew up in. There’s one floor. The hallways and bathrooms are big enough for a wheelchair. The parking lot is completely level with the apartment door.
Despite this house being much more accessible and easier to navigate, I almost never use my walker in the house. And I never walk without anything. To the average person, I probably look less independent now than I was growing up, because I’m almost always in my wheelchair. But here’s the thing they don’t realize: using my wheelchair makes me more independent now, not less. That’s because the meaning of independence has shifted for me.
If my wife is resting on the couch, doing the seriously hard work of growing a human, and she needs a glass of water, I’m the one who will get it for her. If the dog needs to go out, I’m going to take her out as often as my wife does. When the dishwasher needs to be emptied, or the dirty clothes brought over to the laundry room…well, to be honest, I don’t do that enough. But sometimes, I do!
Could I do all these things in my walker? I guess so, to varying degrees of success. (I actually took Banjo out once in my walker. Of course, she got out of her harness and, long story short, the neighbors had to help). But it would be more exhausting, take a lot longer, and in some cases, be more dangerous.
Because I want to help around the house, take care of the dog, and at the end of the day, have some energy left over to say, have a dance and lip sync battle with my wife to some epic beats, I use my wheelchair. The walker, at one point the epitome of my independence, would only make all of that much harder*.
*Well, not the battles. Much like N’Sync owns the Backstreet Boys, I’m the champion of in-house spousal dance/lip-sync battles. Banjo says.
I’m about to embark on one of the most demanding, challenging, journeys anyone can ever take. I don’t know much about much about my future son or daughter except that they will love chicken wings, Ithaca Bombers football, and, most importantly, expect me to take care of them and never let anything bad happen to them. It’s going to require me to come up with creative solutions to what may seem like standard parenting problems. That’s means expert-level independence, the kind of which I could never have comprehended at 31, let alone 11.
So, like all new parents, I’m going to have to adjust. Not just my sleeping or work patters, but something central to what it means to be disabled. The very construct of independence. It’s going to be hard, and I’ll probably make some mistakes along the way. But if I can (with the help of Ashley and Banjo) embrace the fluidity of independence, I’m pretty sure I’m going to make it work.
Keep on wheelin’!
This blog post originally appeared at Parenting on Wheels.
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