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Ten Things About Being Disabled That Most People Don't Realize

I am only speaking from my own perspective. With that, in no particular order… 

10. The effort that goes into the simplest things: How long does it take able-bodied people to get themselves out the door in the morning? Way less time than it takes me, I know that much. I need at least an hour to get up, get dressed and get myself out the door, and that's pushing it. If I want to eat, I need longer. If it's winter, add another half an hour to the whole routine, at least. I never let it show, but I'm pretty damn tired before my day even starts. My dad asked me once why I don't have my attendants come and help me in the morning to save time –my answer is very simple: I don't actually need them to. If I needed help getting out of bed that would be one thing, but I don't. It is exhausting but much more liberating to give myself the time I need to get my day started.

9. Carpets are evil: I have spastic cerebral palsy and it doesn't just affect my legs. I have a titanium manual wheelchair that weighs fifteen pounds. It’s top of the line. I don’t have it because I’m obsessed with being on the cutting edge; I have it because it is the only manual wheelchair I have the strength to propel and control. Only indoors and only if there is NO carpet. Even tightly-packed carpet with no extra padding is a challenge. If I'm in my power chair it doesn't matter but I dare you – try apartment hunting with one of your stipulations being that you cannot have carpet (if you must, you can live with a carpeted bedroom, but that's all). It seems so simple, right? I promise, it isn't.

8. Extreme weather of any kind is a nightmare: For most people, extreme weather is an inconvenience. I have a power chair, which costs more than a car. You want to know what the top warning is, with any power chair? Don't get it wet. Insane, right? I have to avoid being out in the rain, or when it’s snowing, if I can. Thunderstorms are a different kind of torture, not just because they scare the bejesus out of me anyway. Power wheelchair, plus lightening strikes everywhere… you do the math. And the winter! Don’t get me started. The short version goes like this: even the most sturdy power chairs do not have traction worth a damn and no, snow tires for power chairs are not a thing, unless you can afford to buy a separate, all-terrain wheelchair that would cost the equivalent of another car. I have a weather app on my iPhone that I check constantly.

7. Winters wreak havoc: My cerebral palsy causes circulation problems. It's not enough that I have spastic muscles, the blood vessels in my feet had to get in on the action. The spasms in the blood vessels of my feet mean that once my feet are cold, as they rewarm they swell and cause severe neurological itching/pain. This problem is consistent throughout the winter, because it is impossible to completely avoid the cold.

6. Most of my friends are abled-bodied and I prefer it that way: I have disabled friends too and I love them just as dearly. But I enjoy having able-bodied friends a) because we're all people; there is no thick red line separating me from the rest of the world, and I don’t like the idea of living my life as if there were and b) I am lucky to be light and petit. I’m lucky that my cerebral palsy does not cause fragility. Having able-bodied friends opens so many doors for me; my friends give me exponentially more freedom than I would have on my own, or what I would experience if I were only friends with other disabled people; they can carry me and literally take me so many places I would never get to experience if I didn’t have them. They do what they need to in order to make sure that I'm included and that I feel valued and loved and they do it happily.

5. There's a reason I'm preoccupied with bathrooms: Using the bathroom everywhere you go is an amazing luxury that able-bodied people never knew they had. Every time I’m going out anywhere one of my first questions is always related to the bathroom – where it is, how big it is. I do not have a weird obsession with toilets. If I’m going somewhere where using the bathroom would be difficult, or flat out impossible, I need to know beforehand. It doesn’t stop me from doing things; if I only went places where I could use the bathroom without issue, I would have no life. I limit my fluid intake when I have to. It isn’t torture, or even an inconvenience. It's a fact of life. I am lucky though; if I were in dire straits, my friends would and do step up – even the guys.

4. Transportation can be a headache: Having a disability, it’s not always so easy to hop on the bus or subway and it might be impossible to book a cab. Using designated wheelchair transit usually requires pre-booking and does not travel one foot outside of designated city limits. Real, honest-to-God spontaneity when you have a disability is a rare occurrence. See above, re: able-bodied friends and why I love them.

3. Wheelchair parking permits: not a perk, a necessity: Again, I'm lucky to be small and light. With a little help, my friends and family can afford to park anywhere and we all manage. I have no patience for people who park in wheelchair spots without a permit. Once, I was out with a babysitter and someone was parked in a wheelchair spot illegally. She wrote on their windshield with her lipstick. Ever since then I've told everyone who drives me to have lipstick handy; that ain't coming off with windshield wiper fluid.

2. I don’t pay attention to how my way of doing things compares: I’ve never really considered myself to be an inventive problem-solver. I'm a person with a disability, constantly adapting to an inaccessible world. How I get things done is second nature; this is the only reality I know. Sometimes I don't realize how unusual my reality can be, until an able-bodied person watches me in awe.

1. Privacy is a luxury: While getting a tattoo (one of several, all strategically placed to be no one’s business but mine) the artist asked if I was excited to show people. I said I wasn't planning on showing anyone; when people saw it, fine, but I wasn't going to make a point of showing it off. He was perplexed at my answer. I said, "Okay, I'm going to be blunt. A lot of people see me in various states of undress and countless compromising positions, never for the fun reasons. I need a lot of help with things that are private and personal, so my body art is in places where as few people as possible will see it unless I choose to show them." Most of what I need help with are things no one wants a hands-on audience for. Wish it wasn't so, but that's the way it is.

Tags: accessibility, advocacy, inspiration