Proud, But Not Proud [My original life]

in #life8 years ago

 When people first meet me, more often than not, they are intimidated. They aren't intimidated because I'm 6' 2". They are not intimidated by all my tattoos and piercings. They are definitely not intimidated by my black clothes and chains hanging off my pants.

  Except I don't have any of those things.
 I'm not 6' 2", I'm only 5' 1". I don't have any tattoos and I only have my earlobes pierced. I love the color pink and cute sundresses.

 The real reason of why people are intimidated by me is, in my opinion, a really stupid reason.
 A little background: I have two rare gene mutations called ADCY5 and DOCK3. ADCY5 is responsible for my seizure-like tremors I sometimes get at night, but they are both essentially responsible for muscle weakness.
And that is all they are responsible for.
  They do not affect my brain in any way, shape, or form. Period.

No matter how many times I tell people my disability is 100 percent physical, there is always someone who is absolutely terrified to approach me.

 This is to that "someone": I am just about the least intimidating looking person in the whole universe (if you ignore the wheelchair). I'm a blonde haired, blue eyed girl who wears dresses and has a smile on her face 99 percent of the time. Are you seriously scared of that?

 There is, however, also someone who gets over their fear of approaching me. When they do though, they often talk to me like I'm two years old (AKA "baby talk").

 First of all, while I appreciate them taking the time to try and have a conversation with me, I am currently a sophomore in college. I'm turning 20 in less than six months. What 20-year-old wants to be talked to like they're a baby? Pretty sure the answer is not a single one. It is completely demoralizing and just shows the ignorance of the person doing the talking. In addition, simply because someone is physically disabled, that does not mean they are mentally disabled by default. Every disability is unique; no two people share the exact same symptoms, even if they have the same condition.

  Although this has been proven to be rare, there can be someone in the very, very, very exclusive group of people who automatically just "get it." They don't hesitate when deciding whether or not to approach me. They are patient and present in the conversation. With me, I get nervous talking to people I've never talked to before because I'm not sure they'll be able to understand what I'm saying. It is much easier to ask "yes" and "no" questions first and then once I get comfortable enough, I'll expand my replies. If someone absolutely can't understand me, I'll either spell it out or type it on my phone.

 The stereotypes that have been placed on me because of my disability make me wish I didn't have a disability. Every day I am aware of how people perceive me and my wheelchair and it makes me really frustrated. More than ever, I want there to be a treatment for my condition. I don't want to be disabled anymore.

 That being said, however, I feel immense pride as well for being disabled because I have become a trailblazer for other people with disabilities. I have a unique perspective of the world that able-bodied people will never have.

And for that, I am proud, but not proud.

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Image Credit: www.modernreaders.com

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