4:32pm December 24, 2013

➸ That Crazy Crippled Chick: This Is What Disability Binarism Looks Like

worldxmenace:

flutterflyinvasion:

telephonoscope:

This, THIS is why when I get on a bus with my scooter, I sit in it and ride, even though it’s less safe, even though my scooter has tipped over on buses before. THIS is why I don’t just park my scooter outside a bathroom stall and walk in. THIS is why, when I go out in public, I let people think that I’m a full-time chair user. THIS is why 99% of my college campus had no idea I can walk. Because of attitudes like this. Because of ableism like this.

This is why hardly anyone knows that I actually use a wheel chair. This is why I walk even when I shouldn’t.

Holy fucking crap in a box this has 114 notes. Thank you guys so much for your support. I wrote ¾ of this post as a ranty status thing on Facebook and then I realized it was long enough to make an actual blog post.

Anyone who wants has permission to print it out, re-post, etc. as long as it is attributed back to me with a link back to the original post.

Thank you. Thank you. I’m speechless. 114 notes. Holy crap.

Wait, so this person has a disability and shouldn’t always be walking? Is that correct? I hope so. Because the way it reads it sounds like they use a wheelchair to avoid expending energy, which is laziness.
I’m lost.

Worldxmenace,

I use a wheelchair due to chronic fatigue and pain, yes.

Imagine that every step you take, you take on a tightrope. Imagine that each step requires that same amount of concentration and balancing. You walk three blocks and it feels like you’ve walked three miles. And you still have to walk three blocks back to where you started. And yet you keep walking because standing still is much harder, because you don’t have that momentum. You’re just standing still, flailing your arms, tensing and relaxing your uncooperative muscles, hoping you don’t fall, because there’s no safety net, there’s never a safety net for me.

Imagine that you can’t do things like spend a day in your nearest city, because it’s too much walking. Imagine that every time someone says “It’s within walking distance” your heart sinks, because walking distance for them is double or even triple what your walking distance is. Imagine that by the time you get where you’re going, you’re full of exhaustion and pain, so much so that you can’t focus on what you’re supposed to be doing, whether that be work, school, or fun. You literally cannot enjoy anything because you’ve spent all your energy on moving from point A to point B, a distance that is practically minute in other people’s terms.

Using a wheelchair puts me on even footing (no pun intended) with the rest of the world. I am able to do things that most people take for granted. Without a wheelchair, I would not have been able to go to college, let alone graduate summa cum laude. So, no, it’s not laziness, it’s living my life, just like you live yours.

The Spoon Theory is a great piece that discusses the day to day realities of having a chronic disability or illness: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I use a wheelchair to avoid expending energy.

You know what happens when I expend muscular energy?

It drops away rapidly until I become so limp that I can’t even turn over in bed.

Which also involves hitting the floor really really hard and I’ve got some painful ongoing injuries (such as an ileotibial band injury) due to doing exactly that. And I got lucky – falls like that can kill people or render them permanently in wheelchairs.

We don’t know exactly what I have, but we know that it responds to the same treatments as an autoimmune condition called myasthenia gravis. Since my mother has the same symptoms (and responds to the same treatment) too, there’s a good chance it’s a form of familial myasthenia, a genetic condition rare enough that each family that has it, has its own particular set of genes involved. My mom is a patient at the Mayo clinic for symptoms like mine.

And that’s besides the fact that I have other conditions that make a wheelchair a necessity, including a movement disorder and several pain conditions. If my muscles turning to noodles didn’t immobilize me, the joint pain and neuropathic pain would. It feels like a combination of a “sunburn” (that’s the closest analogy I can think of, but much worse) reaching deep into my body, and joint pain so intense it feels like my joints are grinding against each other even when they’re not. I also have stamina issues which can cause widespread weakness, rather than the more localized weakness caused by the myasthenia-like condition.

Oh, you didn’t know that neuromuscular diseases can cause people to need to save energy by using wheelchairs, so that they don’t lose all that energy and collapse in a heap on the floor?

Do you know how many people it takes to lift me off the floor when I’m a dead weight because my muscles have gone limper than you could ever imagine (not just “relaxed” muscles, but super-limp ones)?

Do you know how hard it can be even to maneuver me into a Hoyer lift, if I’ve fallen in the wrong position?

Then you have no business saying that conserving energy is the same thing as laziness.

And that’s besides everything everyone else might’ve said. Because yes, conserving energy from walking so that you can cook dinner is also a thing. Do you want people to starve so they will walk upright and not intrude their disabled reality on your able-bodied world? Do you want people to be able to come home and do literally nothing, just so they could look normal in public?

And do you have a bit of a double standard here? I am almost certain that you don’t go around saying that people should, say, pass a test saying they really need a car, before they can drive one. Hey, they could walk ten miles if they just planned it enough, doesn’t matter how busy they are, how cold it is. But you do think that people should have only the ‘right’ reasons to use a wheelchair. Why? It’s just a vehicle, like a car or a bicycle.

Also?

By the time I started using a powerchair (I waited until I literally collapsed and couldn’t move on my own for ages, because I was that stubborn) I had so little stamina, either body-wide or specific-muscle, that it was completely exhausting simply to drive a power wheelchair around outside. It’s exhausting and I can’t do it very often if I want the energy to sit up in bed on a regular basis (oh yeah, I’m pretty much bedridden despite some advances after getting my Mestinon). If driving a power wheelchair wouldn’t exhaust you in its own right, then you have no awareness what conserving energy even means to a disabled person, you’re not even in the same ballpark with us.

Notes: