Rolling Without Limits

Your mobility may be limited. Your voice, boundless.

"But I Saw You Stand"
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"But I Saw You Stand"

As an ambulatory wheelchair user, especially while transitioning to a chair, I have heard and been told, so many hurtful things. Things from “I saw you walk yesterday, and you’ve walked for years!”, to “you must be faking, you stood up from your chair”, and everything in between. My wheelchair was prescribed by my physician and my physical therapist, based on the significant decline in my mobility, an increase in full dislocations causing upwards of 10 hard falls a day, often with injuries. My “friends” have seen those falls, the concussions, the ambulance trips for stitches and scans because I’m making no sense, the broken bones, everything. And still, they insisted on calling me a fake, because, by God, they’ve seen me walk. They were there for the transition from walking unassisted to a cane, then to forearm crutches, to a walker, and now to a chair. And still, the hurtful comments flow freely. For me personally, I lost my entire vibrant and amazing friend group that was closer to the family for many years as my health and mobility deteriorated, and the accusations began flowing in that clearly I was faking it because these things should be static, not progressive. This is heavily on my mind because this entire former friend group is in my town for my former dear friends wedding, getting married to a former very close friend of mine, and it was made clear that if I accidentally ended up anywhere near where they were going, for meetups or anything, that it would be very unpleasant for me, and I know others have, and are, going through the same thing, and that’s incredibly wrong. But know you aren’t alone.

This is something that so many of we ambulatory wheelchair users hear, especially when we walk, often with assistance, on our good days. It keeps us from exercising on our good days and taking advantage of our good days because of the fear of ridicule and hate. Or, conversely, it keeps us from using our chairs when we need them for fear of being called out as a faker, it makes us struggle with feelings of shame for needing to use a chair in the progression of our condition, whatever it may be. And that is wrong. This ableist thinking needs to end. We are here. We are valid. Our conditions are real, debilitating, and life-changing. And we are a large percentage of wheelchair users. The general population needs to understand that there are many reasons for one to use a wheelchair and that just because it’s a reason that they may not be familiar with, such as Ehlers Danlos Syndrome or other rare conditions - not all of us have SCI or something that they may be more familiar with - it doesn’t make our wheelchair use any less valid. Yes, I can stand. Yes, I can even walk a little bit, but it’s like a countdown timer. I have a short time frame for what I can do before I have a dislocation leading to a fall. If I move wrong, or without concentrated thought, I’m going down. And falling adds danger to my day. Risk of significant injury. Significant pain. And this is the case for so many of us. Weakness. We do as much as we can, but using a chair is a tool, not giving up. Using a chair allows us to do so much more. To exercise. To rejoin life. To have more, and new, experiences. So the next time someone invalidates your wheelchair use, ignore them. You don’t owe them justification. If you hear someone invalidating or accusing someone else, feel free to stand up for them. This is a huge social problem, and it’s not going to get better without all of us joining together and educating the public that we exist, that we are real, and that that’s ok.

 

 

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  1. Arnie Slater
    Arnie Slater
    I’ve gotten that. I use a chair if there is a lot of walking involved in what I am doing. I have CP.
    Log in to reply.

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