MDA Double Life

As you all know I currently work for the Muscular Dystrophy Association’s National office. I’ve been working here for seven months now and it truly has been an eye opener. For starters, the people I work with are some of the nicest people I have ever met. You always hear stories about offices having the competitive, stuck-up office bitches that think they know everything and are the best, well MDA doesn’t have that. Everyone is helpful, supportive and on the same team. We all want to see each other succeed while we strive to follow our mission and vision.

As a person with Muscular Dystrophy, I’m able to see both sides of the spectrum. As a child I went to MDA Summer Camp, went to the clinics to see specialists, and attended some of the fundraisers. Now, as an employee, I get to see the background behind it all. I’m able to see the people who make it all happen, who have their hearts in it, and the dedication that the organization has to grow for the individuals with MD and their families.

Now I know what a lot of you are thinking… that MDA isn’t exactly your favorite organization (for your own personal reasons) and I can honestly say I was in the same boat until working here…

Growing up, MDA Summer Camp was everything. The anticipation that lead to just seven days out of the year completely took over my mind and changed my life (And to this day I still have the same feeling waiting for Horizon camp each year). As a kid, camp was a time to play, to be free, a vacation, a break from parents, a time to grow, to be myself, and most of all camp was a time to learn. After I became too old to go to MDA Summer Camp I felt as if MDA had nothing else to offer me. I felt that all the people I once knew at camp had new campers/friends and that I was just chopped liver once I graduated. I felt that going to the clinic was useless because there is no cure to what I have. I felt that MDA wasn’t doing everything they could to benefit me or my future.

I started working for MDA when the brand launching was first coming into play and was able to be a part of a panel where parents and people with MD got to give their opinion of the new brand logo, mission, and vision. During the panel I realized that MDA is starting to become aware of the things they are doing wrong (well, wrong in my eyes). MDA is growing into an organization that people can truly rely on and respect more. They’re starting to fix the issues they have, gain a new perspective, and slowly becoming a stronger outlet for all individuals with MD.

Part of the problem, I believe, was that there weren’t enough people with MD telling MDA what they were doing wrong. That is currently one of the changes they are making. They want and are looking for advice and opinions from people living with these diseases and their families. I love that I am able to give my opinion from personal experience to better the organizations outcome.

I’d hate to add a cliché… but Rome wasn’t built in a day. MDA really is growing into an organization that adults and families can believe in. I’m not just saying these things to make sure I don’t get fired either… I am just glad to have the honor to be able to be behind the scenes as well as being an asset to the transformation this organization has yet to see.

IMG_1019

Ethics

The rhetorical question that life asks us all at multiple milestones of our lives: Who am I?
This questions stems from so many other factors. Is there really an answer to it? Probably. It’s not easy to obtain it. But it’s most likely possible.
So then I must ask myself….. Who am I?
Honestly I don’t think I know yet. I feel like everyday I learn something new about myself. Whether it’s something I like and don’t want to change, or something I feel like needs improvement.
I do know one thing for sure… I do not like to disappoint. And I like to keep people happy.
So I guess this correlates with my personal life values. What DO I value?
Family: No matter what they’re always there.
Friends: I wouldn’t be who I am without them.
Camp: Taught me to live life without limits from my disability.
Life: It’s short. Live it. You won’t regret it.
Challenges: I love challenges! They make me learn so much about what I’m capable of and what I like/dislike.
Risks: If you’re not taking risks, you’re living life too innocently. You’re missing out.
Honesty: I just don’t see the point in lying. The truth usually ends up coming out anyways.
Positivity: I like seeing the positive side of things. I can have my pessimistic times, I think that’s normal. But in general, without positivity the world is just mean and depressing.
Pro-choice: I believe that everybody is entitled to their own opinion and it does not mean others have to agree.
Open minded: I think this one is a very relevant one. I believe that most arguments happen because of how one minded people are. Though I do not agree with what everyone says, I have the ability to see each side of the argument and attempt to come to some sort of middle.
Equality: If you do not know by know I am all about equality. I absolutely HATE when people treat me like I’m some sort of delinquent human being because of my disability.
Sexism: This one’s kind of funny because my religion can be very sexist. Which I plan on talking about in another blog post… But I refuse to let anyone (mostly my parents) tell me I cannot do something because I am “a girl.” NO! Do not tell me this. You may or may not get kicked. Fair warning.
Gay rights: I don’t even know why this is such a social issue. Because seriously…. Who really cares who people choose to marry or be with. I just do not see the need for the controversy. Let the LGBT community live their life just like the rest of us. They are no different than the rest of the world. Peacefully, for the most part.
Love: I think everybody loves something or someone. Whether they choose to be open about it or not. I enjoy expressing the things I love about life. I feel like it gives others the opportunity to relate or unrelate.

To be able to express my own opinions about some of these topics shows the loyalty I have to my own self. I want other people to know what I think and I could care less if I have the popular answer or not. I think some people are afraid of society and what they might say, so they hold back. I’m sorry, but fuck. That. I don’t like holding things back. Gets me nowhere in life besides one step backwards.

These are just a few things I felt were important to me and who I am. I feel like there are endless factors that create who I am. Everybody is unique in their own way. Everybody has an opinion to every topic. Everybody is different. And I think it’s interesting to realize how accepting everybody has to be in SOME sort of way of people’s personal beliefs and thoughts.

A new day leads to new answers.

Kudos to those that have their answers.

My Bae.

I recently saw a post that someone asked “what is the relationship you have with your wheelchair?” Which I thought was a very interesting question. So I got to thinkin, and this is what I’ve come up with.
My wheelchair isn’t something I really think about all day. To some, that may sound weird, to others you might relate. So just hear me out.
I’ve somehow wired my brain to make it feel as though I’m “walking” in my wheelchair. Which clearly isn’t the case. I’m not delusional you guys, I promise.
I do have days that I realize how fucked I would be if I forgot to charge my chair for a night and then my chair dies. Or the possibility of it stop working. Cuz these are possible scenarios that able-bodied people never have to worry about.
I think I have a mutual understanding with my wheelchair that it’s meant to be my “legs.” I understand some people name their chairs and such but… I’m not that much of a fruit. No offense. (:
I love my wheelchair. Sometimes. And other times it just gets in the way or it’s really loud. Like right now for instance, my wheel is deciding to do this thing where it squeaks every time I drive. It’s pretty embarrassing.
Whatever. I also beat the hell out of my chair… I have 2 broken headlights, squeaky wheels, bent anti tip… I pretty much put this chair through hell just to get things done.
If you want to name my chair for me, be my guest. (:

20140427-210948.jpg

Rocks Don’t Have a Heater.

Sheltered disabled children….
Is one thing that really grinds my gears. Parents that feel the need to protect their child is one thing. But keeping them sheltered because they have a disability is another.
Usually these parents believe that their disabled child can’t leave the house alone and they are the only ones that are able to take care of their child. NO!
Gosh I cannot thank my mother enough for never holding me back from doing something because of my disability. My mom never treated me different just because I was in a wheelchair and my brother wasn’t. I still got slapped just as much as he did… My mom actually use to try and force me out the house to take buses and trains alone.
And now I’m in college, and I did it by myself. I applied by myself. I found help by myself. I called for my accommodations and got everything set up and now I’m two semesters away from being a college graduate. Even my mom was impressed that I did it by myself…
It just pains me knowing that there are really children and maybe even adults at this point that are afraid to leave their house without their parents. I talked about independence in a previous blog so this pretty much connects to that.
I’m not trying to offend anyone here, but if you’re a parent with a disabled child… I can tell you right now, your child is NOT alone. And your child IS capable of being independent. And there are SO many resources in the world for disabled people to go where they need to go and get shit done.
Who knows, parents that have disabled children may never even read this blog but I’ve heard stories about parents who just shelter their child because they don’t feel like their child has the ability to do anything on their own. Which calls for a rant.
It’s just sad, really. There’s so much potential that is being wasted away.
My rant for the week is that some parents that have disabled children should realize by now that we’re at a time where resources are endless. Not to mention support groups left and right. Become educated and let your child live the most normal life they could possibly have. That’s all I ask.
I’m a strong advocate for independence and equality for people with disabilities. If it’s not obvious already. So I feel strongly about people with disabilities doing things on their own and growing up to live the most normal life that any other “able-bodied” person will have.

20140413-174128.jpg

My first blog

I guess I should start from the beginning?
My name is Sawsan Abuosbie. Saw-sin ABOOZ-bee. I’m 20 years old, junior at Illinois state university. And I’m in a wheelchair.
Yes. A 4 wheeled hunk of metal of an ass that I use in replace of my legs. It really brings out my eyes.
I was born with this thing, which I don’t expect anyone to have heard of, called spinal muscular atrophy type 2. It’s a form of muscular dystrophy. And in the muscular dystrophy book for dummies, SMA2 simply means that I cannot gain muscle in the main muscles of my body. Arms, legs, neck, and lungs. This is a progressive disease so I do lose muscle and get weaker with time. Ive had many friends die of this disease because they get so weak, so it is a very serious disease.
For the record, I can feel my legs and ass. But there is one part of my body, unrelated to this disease, that I actually cannot feel. But we’ll get into that later.
For now, I’ll stick to sharing with the world my thoughts and stuff… That’s what blogging is for isn’t it?
I’m pretty chill, I love people, and guys, and abs, and CAMP. oh you guys will hear a lot about my camp. It’s my life. Literally. I LOVE music and the media. Pop culture. All that jazz.
I like to rant about the stupid shit that people do to piss me off. Granted I don’t actually get pissed. More like…. Very confused as to what goes through people’s minds when they decided to be idiots. Yeah I like to rant about them.

Enjoy! Subscribe! Add me! Follow me! Sign up! Email me! I don’t really know how this website works at all so whatever button means you’ll read my posts, click it. (:

20140402-233405.jpg