Mobility Isn’t Binary
Dynamic Disabilities and the Microaggressions That Come With Them
A lot of people think disability is a fixed, binary thing. You’re either mobile or not. It should look obvious if you are. Do you need that wheelchair or not? How nice would it be if my body would pick a lane. But that isn’t the case, and it isn’t the case for many people.
I live with with dynamic disabilities. And it isn’t uncommon, many of us who are disabled do. What that means is that our bodies change. What we can do changes. One day we can walk through a store on our own two feet. The next day that same trip would wipe us out. Some days we use a wheelchair. Some days we don’t. Both are real. Both are valid. The problem is people expect consistency. When they don’t see it, they start questioning. I have heard this whispered - IN OUR COMMUNITY. When someone like me can walk part of the day, but then needs a wheelchair or a scooter - or some other mobility aid, people become suspect. Are they doing this for attention? Why did I see him walking around all day yesterday, and now today he is in a wheelchair? Is he faking it?
What those questions really say is, “I don’t understand this, so I don’t trust it.” And that gets exhausting. It adds up for us over time, and causes embarrassment and shame. Every look, every question, every moment where you feel like you have to prove that you’re struggling enough to deserve support, makes people second guess themselves. It makes people push past their limits just to avoid being judged.
I am an ambulatory wheelchair user. I can walk and still need a wheelchair. I can stand and still sometimes need multiple mobility aids. These tools are not all or nothing. They are used to manage my energy, pain, and safety. Walking across the room isn’t the same as walking through the grocery store, or the mall. Being able to stand for a few minutes at a time at a con is not the same as being able to function on my feet for hours. Using a wheelchair part time is not cheating. It is strategy, and it’s a tool, but people treat it like a contradiction. “If you can walk, why do you need that?”
First of all - the goal is not to prove anything to you. The goal is to get through the day without making things worse. Some days I am better than others. And the saying “use it or lose it” is real, I try to walk when I can to prolong the time until I will need to be in a chair 24/7. And that time is coming. It’s terrifying, but the more I am able to stay mobile, the stronger my muscles stay and the longer I can maintain a little mobility.
I chose not to use my wheelchair at South Plains recently, because I strategized. I know the layout at South Plains. I knew that there were plenty of places to sit, scattered throughout the venue. I would walk around, sit when my legs were weak, stand in a group and talk, and then ask to move the conversation over to a sitting area when it became too much. When I competed at IML, I used my wheelchair everywhere except on stage. I wanted to be on stage on my feet, but that meant preserving my body for those moments, because I am medically limited to about 2600 steps a day. So I budget them carefully, daily.
And then there are the microaggressions. They don’t usually sound cruel, they aren’t even usually meant to be. That’s part of the problem. They just come out as casual comments or questions.
“Didn’t I just see you walking?”
“You don’t even look disabled.”
“Wow, it’s nice to see you out of your chair!”
“I wish I could sit and cruise around all day.”
These aren’t harmless, they aren’t funny or clever. They put people on the spot. They turn someone’s body into something that has to be explained or defended. A lot of this comes from people who think they are just being curious or supportive. Intent does not cancel out impact. It just happened to me at South Plains, someone came up to me all excited and exclaimed, “oh wow, I am so happy to see you not using your wheelchair!” It hit really weird. And I know they meant it well. It didn’t make me angry at them, it just made me feel a little, I don’t know, uncomfortable.
If your question makes someone feel like they have to justify their disability, it could very well make them hesitate to use the tools they need. And that can not only cause them to deal with more pain, it can be dangerous. I am a serious fall risk. I am having surgery on my shoulder and medically retired from a severe head injury from a fall last August. My legs just gave out. So any time I push it, and my back and legs start to tighten up and become weak and painful, I am at risk. So, trust me to know when I am ok to walk a bit, and when it is time to sit and stay safe.
Respect does not require understanding every detail. It’s really so simple when you are interacting with someone and they’re using a mobility aid, just assume they need it.
And if you are someone living with a dynamic disability, hear this clearly.
You know you’re not making it up.
You know you’re not lazy.
You know you are not inconsistent.
You are adapting to a body that does not follow a predictable script. And you don’t have to explain yourself to anyone. If someone asks you why you’re using a wheelchair today, when they saw you without it yesterday, tell them because today you need it, that’s it. They don’t need an explanation and you aren’t required to educate them. My new favorite quote from the fantastic book, ‘Let Them’ by Mel Robbins is, well, let them! Let them have their assumptions, it sucks, but you do you and take care of yourself.
Most people never have to think about their bodies the way we do, and changing these assumptions takes awareness, effort, and constant adjustment. But the responsibility is on everyone else to do that.
