They told me I would be independent. The doctors. The nurses. The internet. They would walk into my room and tell me how capable I would be at the same time they watched me hold my finger on a button to slowly raise the head of my bed and sit up. Laying in that same bed—one I could only leave and return to by the strength of a mechanical lift—my glasses reflected the articles and social media accounts I scrolled through on my phone. The ones that told me independence was the goal—the gold standard of disability—and I could achieve it. It was the finish line to recovery and when I reached it, I would once again be a whole person.
I clung to this notion, this ultimate goal, and wore it proudly—like a neon sign above me with arrows pointing down, framing my head saying “this girl here, she will be self-sufficient. Just you wait.” It was only a matter of time. I would be independent. I would be capable. I wouldn’t need to rely on anyone or anything—well, except a wheelchair—to live a complete life. My self-worth became entangled with this concept that was all very black-and-white to me. I could be useful or useless. I could be part of the solution or part of the problem. I could be independent… or I could be a burden. There was no grey area to exist in and, as I saw it, if I didn’t do everything on my own accord, I would have failed at recovery.
However as I lay in that hospital bed, paralyzed for only a hot-second compared to living almost three decades with a body that worked as it was meant to, my perspective of independence was skewed—steeped in those 28 years of existing inside a different body. I looked at my goal through able-bodied eyes and worked towards it with the ideals of who I used to be.
I could accept the wheelchair but I didn’t want my life filled with bulky, attention-grabbing adaptive equipment. And I didn’t want to need the strength of another human to get me through my life. I wanted to do it all myself. This view of independence was unattainable. But it’s also what inspired me to keep trying and what got me to a point where I could view independence in a new light—steeped in the new experiences of a new body.
A couple of months ago I was driving with one of my boys and I told him we were thinking of getting a truck. His eyes lit up and a smile spread across his face, showing the gap between his front teeth that I hope never sees the wire of braces.
“Sweet! What kind? Like Uncle Kyle’s?” Then his face fell and he looked over at me with concern. “Wait. How are you going to get in? Is Daddy going to piggy back you every time?”
I smiled back at him “Uh, no dude. He’s not.” I went on to tell him about the lift we were going to get. One I could transfer on to and then push a button to raise me up higher before I could slide over into the passenger seat.
His smile returned. “That’s so cool! When are we getting it?”
“Yeah. It is pretty cool.” As soon as I uttered these words, they flew back at me like an unexpected slap to the face. Because I actually meant them. The lift is pretty cool. This sometimes-attention-grabbing piece of adaptive equipment is pretty cool. And it isn’t a sign of weakness. It doesn’t make me useless, helpless or part of the problem. It definitely does not make me a burden. It is part of our solution. It gives me the power to get in to a vehicle that would otherwise be impossible for me. It gives me freedom and—yeah, you guessed it—independence.
Life is so rarely lived in the black-and-white—it is lived in every shade of grey in between. And the thing is—the doctors, the nurses, the internet—they weren’t wrong. I was. Independence is not a one-size-fits-all way of life. Being independent is taking control of who you are and making the decisions, using the equipment and utilizing the people who you need in order to live your fullest life. Others will make judgements on it based on their own experiences. But the thing with public perception—at least with disability—is that there is no winning or losing. People marvel at your strength and perseverance when you do something on your own but applaud you for your bravery to get out and do something even if you need assistance. No matter what, you’re a fucking rockstar. So go out and rock your own version of independence.