Dynamic or Melodramatic? Living with a Disability

I am at negative 10 spoons already but want to go out with my friends. My body is screaming at me to just use the dang mobility aid, because let's face it, there is no way I’ll make it through the night without it. 

BUT, I just can’t get over that comment my coworker made 3 weeks ago… “Do you really need that cane? You didn’t need it at your birthday party you posted on Facebook last week.” 

Ouch. 

I tried to explain that sometimes I need it, but sometimes I don’t, but it didn’t come out quite right. 

I wanted to say I need it a lot of the time, but most of the time I don’t use it because I want to avoid interactions like the one I am literally in right now… with this coworker. 

I wanted to say that I haven’t seen my friends since my birthday party 3 weeks ago because I didn’t use the helpful assistive devices and my body has been in survival mode trying to recover. 

Also, not to mention the fact that I didn’t want photos of me using my mobility aid on Facebook because Grandma Betty doesn’t know how to NOT comment on it every.single.time. (That is some deep-rooted internalized ableism that we’ll work on in therapy).

What is it about dynamic disabilities that has able-bodied people’s panties in a wad for? 

Why is the first assumption that we are faking it or being dramatic? 

I’ll tell you my best guess: because they have the privilege of not knowing what it is like to feel like you’re dying on the inside, but look fine on the outside.

We, disabled people, are well aware of the fact that our disabilities, needs, functionality, and mobility can change literally minute to minute. One second you’re enjoying yourself at dinner and the next you can’t even get yourself to the car to go home.

It truly changes that fast. 

Able-bodied people have the luxury of not knowing what that feels like. What it feels like to not trust your own body, to even be scared of your own body.

Many able-bodied people assume disabilities are constant, stagnant and stable which is totally not the case at all. 

I’m a firm believer that ALL disabilities are dynamic because even if someone does have a disability that is the same all of the time, their environment, diet, rest, mood, anything you can think of, will affect their disability in one way or another. 

So back to the concept that we’re faking or being melodramatic when we use assistive devices one day but not the next. It’s less likely that we’re faking or up-playing that we are sick and more likely that we are faking or up-playing being well. 

It's uncommon for people with disabilities or chronic illnesses to show every symptom, every pain, every inconvenient twinge that reminds us we live in a body we can’t rely on. If we did that, we would be subject to a lot more invasive questions from people who, more or less, just won’t ever understand unless they experience it themselves.

And when we use mobility aids or assistive devices dynamically, it is almost like announcing to the world, “Hey everyone, yes I’m disabled but no, not visibly everyday and it doesn’t make sense to me either!” which again, elicits unsolicited comments. 

Because how can we explain what is happening within our bodies if we aren’t even that sure?

There seems to be a mix of misplaced anger with a hint of abled saviorism when it comes to addressing part-time assistive device users. 

People will feel like they are “doing good” for the “handicap” if they call out the person who stood up from their wheelchair in the grocery store or the young person who is getting in their car parked in the accessible parking. 

Disabilities can present so differently. No two disabled people will have the same needs and thresholds that another will. 

Using mobility aids and assistive devices is a very personal choice and whether or not someone will comment on your need for a device today but not last week should not have to be a deciding factor, period. 

Anyways, I still need to decide if I’m going to use my mobility aid tonight with my friends or not.