Inspiration Porn

A/N-Before we begin....I'm on Facebook! Just let say I have no idea how to run a personal blog page so bare with me as I figure that out. I'll share the link to that below. Also I'm sharing a link to a video called "I'm Not Your Inspiration, Thank you very much", a talk by Stella Young. When you read this post and watch the video you are going to notice a lot of similarities which I didn't do on purpose at first. I then watched the video after this was typed out and almost everything she said I had thought, felt, and/or written down.

   Hey everyone!
   
   It's no secret that I like to work out. Well, OK, truthfully I hate working out but I'm always glad I did afterwards....isn't that what it's like for most (sane) people anyway? While I work out I like to listen to motivational speakers and most of the time the speech is accompanied by a sports montage which doesn't bother me at all. Now as much as I love able bodied sports I'm, of course, drawn to Paralympic sports because I see myself in those athletes more then those athletes in able bodied sports. Personally I love, love, love it when people make montages of Paralympic sports and add a motivational speech because it's often done in a way that isn't singling us out or idolizing us. It's showing us as the athletes we are and they have a motivational speaker in the background just as they do for Olympic and other sport montages. It's a normal thing to see on YouTube.
   But what does bother me is when the see videos that have this slogan in the description, at the beginning, in the title, or in the comments- "When you're down, watch this!". Then proceeds to show a video of people who are "disabled" (I hate using that word) doing sports or living life. People are comparing their lives to ours in ways such as "Oh my man well I was having a bad day but my life isn't as bad as theirs! I am so blessed that I'm not in a wheelchair". As if having a disability is the worse possible thing. I don't want y'all to do that. My life with my disability is hard, yes, but I'm 100% sure that there is something going on in your life that isn't easy and that you wish you didn't have to deal with. I understand when some people look at others who have a disability they think "I'd be pissed off if that was my life". And sure sometimes I am too..however you are still thinking that being in a wheelchair or any other disability is the worse thing that could be going on. Sure my problems may be more apparent, but actually my disability isn't the worse in my life either. I have other stuff that I would change way before I would ask not to have Charcot Marie Tooth.
    People with disabilities don't see their lives are exceptional. At least not me. I'm honestly not doing anything out of the ordinary then other teenagers. Honestly what I do most of the day during the summer is as followers- get up, eat, check all my social media and emails, blog or write something else, listen to music, watch TV, and then exercise. Sometimes I'll go out to the mall and movies with my friends. But I'm not doing anything different then most teenagers except I do it all sitting down or with the aid of my leg braces. Most people who are living with a disability don't want or feel like they should be subject as inspiration.
   Again, most of the time when we are being called inspirations it is from people who are really really kind and sweet and do mean it. I don't so much mind that. That's meant in a positive way. What I do mind is when I see pictures like this on the internet while I'm scrolling through workout inspiration-

 (for those who can't see, the girl has prosthetic legs)

   That my friends is called inspiration porn. A picture or a quote that is used to make others feel good about themselves because they don't have "as a life as that person over there who is in a wheelchair or has a disability so that persons life must be horrid.". This is negative. We don't want you to look down on us as if we are something to be pitied or something to compare your lives to when you think yours is horrible. That's not why we're here. These types of posts make me angry, but most of all they make me sad because I think " is this is how people see me when I go to the gym? Or when I go to the store? Or when I go to the movies?".  I'm living a full life. Yeah at times it isn't fun but that is the same for anybody, regardless if they have a disability or not.
    This isn't to say that people with disabilities don't need help at times. We do need to have access to ramps and handicap parking and stalls in the bathroom. This post is to say that the way we are looked at needs to change. Personally I don't have a problem with someone asking me if I need help if it looks like I'm physically having a hard time since that's what most people would ask an abled bodied person. What I do want to change is a scenario like so:
I'm grabbing a box of cereal off the shelf and someone asks if I need help when it's clear that-

1. I have it in my hand....I don't need help getting it into my shopping cart  
2. I haven't even tried to grab the box off the shelf yet
3. They keep pestering me about it even after I say "No thanks, I've got it. But thank you!" with a smile.

  Now this post isn't just a rant or a bully post. I totally understand that when people usually say "you're so brave" or "you're an inspiration" that they mean it with the kindness of their hearts and that makes me smile. This post isn't meant to offend or critique or rant. This is meant to be an eye opener. I know it's hard to change the way you think, especially if you've been in a mindset for a long time, but if you can try that is all I ask. Try to look at the disabled community as people who are just living life a bit different then you. Not as an inspiration. Going to the grocery store or working as a doctor while in a wheelchair or having another disability shouldn't be a surprise or anything out the ordinary.
   It's up to the disabled community to spread awareness that we are people and we are just living a life that looks a bit difficult. We need to be open and thankful that we get the chance to educate.

XOXO,
Dana

Facebook link- https://www.facebook.com/pages/Here-I-Am-On-My-Way/1438109616460397?ref=hl

Stella Young video-

 

Why I fell in love with "The Fault in Our Stars" (before it become a movie)

I read the Fault in Our Stars by John Green about a year ago, before news of the movie even came out. I read it per request by a friend who told me that it was worth reading and because she thought I'd like the way it was written. And boy was she right.

Just as Hazel Grace says about Imperial Afflictions, John Green is the first author that I've ever read who can portray an illness/disability and make it seem like a minor detail while still making it apart of the story...as someone with Charcot Marie Tooth (a neuropathy that makes it painful and tiring to walk and causes me to get sick more easily) there are actually  themes of the book I can relate to. Which is rare.
 
   Now I'm not saying that my life is any way as hard or painful as Hazel Grace's or Augustus Water's. I'm not saying that at all. I'm not dying. There is a very good chance that I will live into adulthood. I live a life that is probably much easier then most people in my situation. But my CMT isn't going away. In fact, more then likely, I believe that it will progress. There is a good chance that I will someday be permanently in a wheelchair. I know for a fact that I will always be tired and weak and get my pain cycles. There are parts of Hazel and Gus' story that tug at my heart string. For example: when she is at Anne Frank's house and has such a hard time making it up the stairs? I've been there. That feeling of  "I can do this. I don't need to be different then the other people here". That feeling of "I'll show them". That feeling of "I'm perfectly fine, I don't need to be treated like someone who is sick" while in truth you are that person. You are that person can't do all the things someone else can do.
    When Gus is calls Hazel in the middle of the night sobbing and it turns out he was trying to buy cigarettes because it's the "one thing he wanted to do on his own"? I have felt that so many times.  The feeling of wanting to be able to rely on the body that is suppose to ABLE you to do something not hinder it. The feeling of why even exist when my life is so full of sickness? All of these parts of the book (and Hazel's questions and overall being) were what hit home for me and caused me to enjoy the book so much. Because I can relate. I know that I've felt that way at least once in the 16 years that I've been alive.
 
   Why do I love Gus so much? It's not because he's dreamy and mysterious, though that may be part of it.. It's because he sees Hazel as who she is as a person and not the illness. He treats her as if she is not her problems. The part in the book where he asks what her story is and she begins to tell her cancer story? He interrupts and tells her he wants to know HER story, not her cancer story. He wants to know her dreams and her hobbies. The unique things that set her apart from everyone else. That's what I want. I want a man to love me and not to linger on my disability. John Green doesn't romantize the illness. He romantizes the love between two people who just happen to have an illness. Sure Gus worries and makes sure that Hazel is OK to do something, but he doesn't stay bent on the subject for too long. He plans ahead to make sure that Hazel has everything she needs, yet he doesn't worry about the moment. He wants to live and he wants to live his life with Hazel no matter how hard it gets.
 
John Green has done something that no other author that I've ever read (and there have been ALOT) has ever done before. And that is write a book that has deeply impacted me because I can relate to the main character without feeling like something to be pitied or something to be idolized. He has penned a story that doesn't linger so much on the life that a chronic illness or terminal illness can take away but instead focuses on the life that one can live while surviving and dealing with the illness. This is something special. And something that I, someone with a disability, hardly ever get.

John Green gave us a positive light to shine through, even if that wasn't his intention when writing 'The Fault in Our Stars'. He gave us a voice that is telling the world that we are living a full life. That is what we strive for each day. To live a full and happy life. And that is something that I am so very grateful for. So, Mr. Green, if you EVER happen to stumble across this or actually read it, I (on behalf of me and my friends who struggled with any type Muscular Dystrophy) would like to say thank you. Thank you for writing a book that I can relate to and have fallen so in love with. It hold a special place in my heart for a different reason then most people have.

Sincerely,
Dana