11 Things About Being Lower-Limb Disabled You May Not Have Known

Living with a lower limb disability is an adventure. Everybody appreciates that. But the public understanding of what it’s like to live disabled is lacking in a few areas- take it from someone who had to get hit by a train to learn how wrong she was about disability. Here are 11 things that, much like the train, I didn’t see coming.

1. You do everything with your hands.

Everyone kind of knows this one. But think about what that really means for a second. Yes, I have to flush the toilet in a public bathroom with my hand. And consider this- when you’re in a wheelchair; you’re basically palming the soles of your shoes all the livelong day.

2. Your equipment becomes a part of your body…

This is a big one. More than just an extension of your body, your devices become a part of you, because you literally can’t get by without them. It can be overwhelming, to be so dependent on a mechanical device, 24/7. It’s hard to let that device out of your sight, or trust someone else to handle it.

3. …and that equipment is expensive.

Insurance or not. If you want freedom and mobility, you have to pay for it. And it’s a very frightening, uneasy feeling to doubt whether you can financially afford what you cannot survive without.

4. You can’t bring your own wheelchair onto an airplane…

Nothing strips you of your dignity more swiftly and surely than flying. You have to transfer into an “aisle chair”- property of the airport, and narrow enough to fit inside the plane. Then you get wheeled to your seat by a disgruntled employee, and have watch anxiously over your shoulder as an even more disgruntled baggage handler takes your personal chair and tosses it in with the strollers.

5. …and once you’re in your seat, you can’t get up until the plane lands.

Like I said, those aisle chairs are property of the airport, not the airline. So, go easy on the Sprite. On my 15-hour flight from L.A. to Sydney, I got to drag myself across the plane and climb around in the bathroom on my hands and ass. Hands. On the floor of an airplane bathroom.

6. Fashion has not been designed for the disabled.

Clothes aren’t sewn to be sat in all the time, nor are pants tailored to fit well over prosthetic legs, and this is a bigger, more obnoxious problem that I ever would have expected.

7. Hospital wheelchairs aren’t the same as daily-use wheelchairs.

Hospital chairs are bulky, difficult to maneuver, and one-size-fits-all— not what you want to live out of. But somehow, T.V. and movies always portray wheelchair users in them.

8. Hotels are hit-or-miss.

If you’re lucky, they’ll have a “handicap room” and it’ll be available. You’ll have railings in the bathroom, enough floor space to maneuver a wheelchair, and a shower seat. If not, your wheelchair gets to stay in the entryway and you get to sit bare-assed on the shower floor in the Quality Inn.

9. You track mud, dirt and snow around everywhere.

If you’re in a wheelchair, your tires are your shoes. And you can’t take those off when you, say, go in the house. And have you ever tried to change a shoe on a prosthetic foot? Pain. In. My. Ass. So, get ready for tire tracks and footprints.

10. Independence becomes everything to you.

Seriously. It was strange to me how instantly my independence became my top priority. My independence is my pride; it’s my dignity. It’s my humanity. Independence is a mark of adulthood, and it’s often belittling when people assume you need help with simple tasks.

11. It’s astonishing how quickly you learn.

Within a couple months of my amputations, I had the mechanics of daily life pretty much figured out. But more than that, I had developed the skill set to deal with unfamiliar situations. Necessity is the mother of adaptation, I suppose.

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