My disability isn’t very visible. I was paralyzed from the waist down in 2009 after sustaining an incomplete S-5 spinal cord injury during a soccer game. After using a wheelchair for a little while, I was able to regain enough sensation and movement to learn how to walk again. Now, I use a leg brace and walk with a slight limp, and I can’t walk further than 20 yards without getting tired. I also can’t stand for longer than a few minutes at a time because of my pain and weakness. And of course, I have some of the classic SCI symptoms: lack of bladder control, inability to regulate temperature below the site of injury, etc.
So, yes, I am disabled! I have a disability that affects me every day, as do all people with spinal cord injuries. Yet, whenever I refer to myself as “disabled” or as “a person with a disability,” I feel a twinge of guilt. Identifying as disabled out loud makes me feel guilty, as if I don’t have the right to claim that title.
I’m not exactly sure why I feel guilty for identifying as a part of the disabled community—specifically, the spinal cord injury community. Maybe it’s because I don’t “look the part” of having a spinal cord injury, as if there is only one way to look and be disabled. Maybe it’s because of the stigmatization of “invisible disabilities”, where invisible conditions are seen as less inhibiting and less real. Maybe it’s because of all the times I’ve been apprehended by strangers in public after legally parking my car in an accessible parking spot (and trust me, this is a common occurrence.)
Or maybe it’s because I know that I have more mobility and more sensation than a lot of people in my same position. Maybe it’s because I feel like I got lucky when I made my physical recovery. Maybe it’s because I’m constantly wondering why I’m able to walk and move and feel, when so many others never will.
Maybe because I’m less disabled than some, I don’t feel deserving of the title at all.
But disability isn’t static—neither are spinal cord injuries. SCIs aren’t a “one-size-fits-all” identity marker that looks the same for everyone. I shouldn’t expect myself to look any sort of way to validate my identity, nor should anyone else. Disability also isn’t a competition. What good comes out of comparing disabilities? Everyone is “less disabled” or “more disabled” than someone out there. Ultimately, comparing my disability to others is an unhealthy habit, and all it does is make me feel bad about my own struggles.
I have a ways to go before this disability guilt completely leaves my mind. And of course, I must recognize that I do hold “passing privilege” (meaning I can sometimes pass as able-bodied in certain settings) that benefits me at times. I don’t have to deal with as many stares or instances of discrimination as people who use wheelchairs. I acknowledge that I do have privilege due to my physical recovery. But, I also need to recognize that I don’t have to look a certain way to be considered disabled. And I don’t need to be any “more” or “less” disabled to be considered as someone with a spinal cord injury. Neither does anyone else.
No one with a disability needs to feel guilty about calling themselves disabled. If you have a disability/SCI, no matter what kind, no matter the severity, and no matter what you look like: you are valid, and you have a place in the disability community.
Hopefully, someday, my guilt will go away. And in the meantime, I’ll continue to call myself what I am: disabled.
This post was written by Mackenzie Saunders, Spinal Cord Injury Law Firm Paralegal and SPINALpedia Director of Operations. Mackenzie is currently finishing her degrees in Political Economy and Justice Studies at Arizona State University, and will attend Harvard Law School in Fall 2022. Mackenzie loves dogs, public speaking, and spending time with her sisters.