One of the benefits of being the editor of NEW MOBILITY is getting to talk with fascinating people from all corners of the wheelchair-using spectrum. The search to find interesting stories to share with you often leads me down a rabbit hole of people who are pushing the boundaries of what is possible and redefining society’s expectations.
I’ll let you in on a secret if you promise not to tell: It can be pretty overwhelming.
Community leaders with nonprofits that are saving lives, activists and advocates who are fighting for laws to help us, award-winning athletes, authors, inventors … the list goes on. It’s just as rich and deep as the list for society as a whole, and to be honest, I think the obstacles and complexities its members face make it even more interesting.
I don’t know what it’s like to deal with all of those obstacles, but I’ve dealt with my fair share and watched friends and people I know deal with them, and I know one thing: It’s never easy. Life is hard enough as is, but when you add in whole new levels of social and physical complications, well …
This brings me back to feeling overwhelmed by the general “kickass-ness” of our community. When I talk with people who are doing cool things, it inevitably leads me to the same question: How do these highly successful people do it? What is it about the way they live their lives that allows them to keep pushing forward?
I’m not too proud to admit that there have been long periods of my 20 years on wheels where I’ve considered it a victory just to sit up and feel decent for a whole day. Setting, much less achieving, the kinds of goals these folks pursue wasn’t even on my radar.
Further complicating the matter, we live in a society with severely lowered expectations for people with disabilities. Rather than try to understand what we deal with, people are desperate to heap praise on us at the slightest hint that we might be “progressing” toward their sense of normal.
If you’ve ever had someone excitedly mistake a spasm for your inevitable return to walking, you know what I mean. It’s easy to laugh at extreme examples like that, but when your health is up-and-down and your plate seems full, other people’s lowered expectations can make it easier to take stock of your situation and accept the status quo.
The main commonality I see in the impressive people I’ve been fortunate enough to meet is that they refuse to settle for OK. They reject the idea that they deserve anything but the best, and they take practical steps to try and make whatever that may be into a reality.
Examining my own life and the choices I’ve made through this lens has been eye-opening. From little things, like adjusting a slightly out-of-kilter arm rest, to big things, like taking the risk of replacing a competent caregiver in hopes of finding a better match, I’ve worked to identify areas where I’ve been settling and take control. The changes have been empowering.
As we kick off 2019, I encourage you to do the same. I’m not suggesting you have to become a Paralympian or write the great American novel — though by all means, if that’s what you want to do, go for it — just that you honestly look at your life and see if there are areas where you are settling. Maybe it’s disability-related, maybe it’s not. And maybe, if I’m lucky, I’ll find you on my interview list.