Category: Blog

This post is probably long overdue but oh well.

Ever since I was six years old I’ve been going to summer camp. From the age of six to 17 I went to MDA Summer camp which is only for children that have Muscular Dystrophy. Since I turned 18, I attend Association of Horizon Summer Camp which is a camp for adults that have any type of physical disability. It is a non-profit organization so throughout the year we are constantly fundraising to make sure camp continues each year.

Camp is and has always been my number one priority. I know for a fact I would not be the person I am today if had never gone.

Camp has taught me that I am not alone.

That I am not limited.

That I am not different.

That making a fool of yourself can be socially acceptable… For the most part.

Because of camp I’ve met the most amazing people to ever walk (or roll) this earth.

I wish I was able to describe the week I have but words are just not enough. There are no words to describe such a week. When I’m at camp it’s almost as if I’m on a different planet. Nothing else in the world matters for about 168 hours… It also helps that no one has service to make contact with the outside world with their phones.

Camp is a time to learn and grow. To open your eyes to new experiences. To make people see that adults with disabilities are just as normal as anyone else. To learn that a physical disability does not make or define a person. Because, mentally, that person is still human. And can understand 100% what is going on around them.

Horizon is my life. They are my family.

Even though volunteering could involve wiping some butts or showering someone, I can guarantee you the best week of your life.

Camp gave me confidence. I am so confident in what I CAN do. I focus on the cans rather than the cants. Otherwise, how would my life move forward?
There are obstacles to make something happen, even with something as simple as swimming, but those obstacles are just a different way of doing something aside from the “normal” way. Finding your own special way to do something. If you’re determined to do something yourself. You’ll find a way to do it.

Camp has become a permanent part of my life. A permanent part of me. A tradition. At this point in my life, taking away camp is like taking away Christmas.

I could never imagine my life without camp. There’s no non-cheesy way to put it.

You know what really irks me? Those grouchy disabled people that get angry when strangers try and help them? Am I the only one who knows these people exist?
I love when strangers open doors for me! I appreciate every single person, friend or complete stranger, that tries to help me if it looks like I need a hand. It just means they’re a good person trying to help someone in need. Seriously, I know one of my friends told me that when she tried opening a door for this disabled man he gave her attitude and said “I got it!”
How rude!
Now I get it, some people can open doors themself and underestimating blahblahblah but if it’s a stranger… They clearly don’t know what you’re capable of doing on your own and let’s be real… Opening doors is ten times easier if someone else does it for you.
My friends know what I’m capable of doing myself. Strangers do not. Strangers assume that people in wheelchairs are pretty much helpless (unless they personally know someone else who’s disabled) so we have to just let them do their good deed of the day with a smile on our face and say thank you. It’s only for half a second anyways.
Now I’m not saying it’s a good thing that strangers think we’re helpless but… We only have about 2 seconds of meeting that person which isn’t quite enough time to explain to every stranger of all your capabilities.
All I’m sayin.

Smile, bitches.

My biggest pet peeves when it comes to being in a wheelchair.
The shit people say and do….
1. Telling me to turn off my wheelchair.
I’ve been in a wheelchair since I was like 3 years old… And for SOME reason people feel the need to tell me when to turn my chair off… I think I know how to control my own chair. Personally, I hate turning my chair off so that’s probably why it bothers me so much.

2. Telling me HOW to drive.
Back to being in a wheelchair since I was 3… Some people try and tell me which way I should be turning and places I can and can’t fit. I don’t tell you guys how to walk. Just like you guys stub your toes, I run into things here and there. Same concept.

3. When people pet me.
I’ve come across a few incidents where people like to pet and stroke my head when they first meet me… I feel like a freakin dog. I think it’s the equivalent to shaking peoples hands or giving them a pat on the back. I haven’t quite figured out why but it’s quite annoying. Also, you’re messing up my hair! C’mon people.

4. When people apologize for disability.
Now it hasn’t happened to me personally but I feel like people have apologized to my mom before after she tells them I have a disability. WHY?! I’m not dying people. Apologizing for something I was born with is like giving condolences after someone’s death. So… Watch how you reply to news like this.

5. When people assume I’m paralyzed.
I CAN FEEL EVERY BODY PART. Some people feel the need to answer other peoples questions about my disability by telling others I’m paralyzed. False. Paralyzed means you have no feeling or control in a certain part of your body. I have feeling, I just don’t have the muscle to move it.

6. When cops tell me to slow down.
This happened a lot in high school. The security guards would tell me to “slow down or they’ll give me a ticket” and I just ignore or give them a quick fake chuckle. I don’t know why, but it’s very annoying when cops do this. I feel like an 8-year-old on one of those electric cars that go like 3 miles an hour with my dad screaming behind me “slow down I can’t catch up you’re too fast for me” to make the experience funner and more exciting….

7. “Going for a walk”
If I say this, please do not correct me. Clearly I cannot walk but saying “I’m going for a roll” just sounds weird.. Plain and simple.

8. Being stuck behind people.
This is the worst. People generally walk at a pace of about 3 miles an hour. My chair can go twice that fast. So when a group of people decide to walk right next to each other and there’s no way for me to go around, my god it’s annoying. Imagine if you were on your longboard or bike and this happened. Yeah, I feel the same way.

9. “You’re so lucky you don’t have to walk”
…..believe it or not I’ve been told this a hand full of times. Not being able to walk is not something to be lucky about. I’ve gotten this mostly when I’m out with people and there’s a lot of walking involved. Like at a mall or amusement park. I’m not “lucky” I can’t walk, you’re just lazy and out of shape. When you get tired of walking you have the ability to sit down and relax. I do not have that option. Just a little thought.

10. Random wheelchair people say hi
So at school there aren’t that many wheelchair people maybe like seven. I know two of them… Yet when I pass one I don’t know, they feel the need to say hi to me. Okay, I don’t wanna sound like an asshole or anything but it’s obvious the only reason they’re waving is because we’re both in wheelchairs.. For some reason, this is a pet peeve of mine. I say hi to lots of random people but not specifically because of a certain feature. I may be over exaggerating this one but it’s something I’ve noticed.

11. Accessible. One step.
If a building has ONE step, it’s not accessible. A number of times I’ve had people say “yeah it’s accessible, there’s just one step.” That “one step” is usually a huge step that my wheelchair cannot go up without assistance. Therefore, it is not accessible.

12. When people call me speedracer.
I feel like an 8-year-old when people say this. Just don’t do it.

These are just some things I’ve thought about. I know there’s more so I will be adding to the list as life goes on. (:
I still love you all, just some things on my mind. (:

So I’m a girl. Muslim. And disabled. Meaning there’s lots of double standards, religious expectation, and underestimation in my life.
Triple-suicide-bomb is what it actually sounds like.
I absolutely hate when my parents try and say my brothers can do something because “they’re boys and I’m a girl”
Drives me nuts. I’m sure my parents know by now that using that excuse will only make me want to do it more. Going to college is one example. Involves all three of these actually!
Before going to college it was a huge debate about me going away to Illinois state for college.
1. Because I’m a girl.
2. Muslim girls don’t go away for college. They pretty much must live under their parents wing until marriage.
3. I’m disabled, how will I fend for myself.
I fought and won all three arguments. And I am really glad I did.
I was born and raised in Chicago. Though I truly respect my religion and the beliefs, some rules are just meant to be broken. I’m completely Americanized. And my mom gets that. My stepdad on the other hand, does not. I can go for hours on end about him and how much I disagree with every little thing that comes out of his mouth, including the way he raises his kids, but I won’t. Because hes not worth the precious words I use in my blog.
Anyways– I digress.
So I am Americanized and just think that some American customs make a lot more sense than Muslim ones. I mean it’s what I grew up learning naturally in this society. I like to have my own beliefs. Makes me know I have control over my life and where I’m headed.
And I want my kids to grow up knowing that too.
I don’t want people to get the wrong idea about Muslim religion. Everyone that knows me, knows I’m Muslim yet still am Americanized as can be.
I honestly hate when parents bring their family here to America trying to shelter and protect them from the society they live in. IT DOES NOT MAKE SENSE.
I get it, better opportunities here, but you can’t expect your kids not to catch customs from the place they reside. Its so irrational to think they have the capability of hiding the real world.

Okay… I could go on for hours about how I disagree with how some people raise their children. I’ll just agree to disagree for now.
I just know, in my case… My parents finally see that my disability has never stopped me from doing anything, me being a girl will never stop me from doing any “boy” things, and I am an Arab-American with mixed beliefs.

Sue me.

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. (:

 

I know I’m not the strongest person. But I’m as strong as I can be.
I know I’m not the smartest person. But I know i know some things that others might not.
I know I can’t walk. But I know I can rock a wheelchair just as good as a girl in yogas.
I know I’m not perfect. But perfectly imperfect.
I know I’m not normal. But I don’t care to be.
I know I’m not the most popular person. But I have a small amount of best friends that I love way too much and would never switch them for more people.
I know I’m not the most religious. But I have my own beliefs.
I know I’m not the prettiest. But that doesn’t mean I can’t be confident.
I know I’m not the most creative. But I like to act like I am.
I know I’m not the best singer… Not even close. But the hell it’s gonna stop me from singing.
I know I can’t help everyone that needs it. But I like to believe I can.
I know I’m not most open person. But I love to let people in and figure things out.
I know I’m not the happiest person. But everyone needs a shoulder sometimes.
I know I’m not the nicest person. But I would never do anything to intentionally hurt someone. Ever.
I know I don’t always have the best ideas. But I love contributing.

Just because you’re not ‘the best’ or ‘the most’ at something… Doesn’t mean you should stop doing it. Just know what you’re capable of and hold on to it. Cuz chances are… There’s probably someone worse than you.

There are just those days that I wish I could be invisible. A day where I don’t have to fake a smile. A day that I could just mope for absolutely no reason with no one asking me “what’s wrong?”
Now, I don’t wanna sound emo or depressed or anything. I’m really not. Everyone just has those days where they just want to shut out the world. But every class I’ve had in college where usually the teacher has no clue who you are, will always know me.
No matter where I go or what I do, my chair will always make me noticeable. And it sucks. It has it’s perks, I don’t wanna sound completely negative here.
But, for example, my accounting class of almost 200 only about 30 students go because she’s the worst teacher ever and class is irrelevant. So anyways. After skipping class for like 3 weeks my teacher goes “oh it’s nice to have you back”

LIKE OMG

HOW. AWKWARD.

Luckily she assumed I wasn’t coming to class because I told her I get stuck in the snow. But still…

Days where I just hate people and the world and want nobody to notice my existence….. It’s physically impossible.

And then I just have those days where I feel like no one notices me. No one texts me that day. I feel like the world hates me.

Sometimes… There’s just no medium.

#TheStuggleIsSoReal

Independence. A strong word and even stronger characteristic.
I don’t think everybody realizes the things I go through everyday. Not even just me. Anybody with a disability.
How long does it take an able bodied person to put a shirt on? Five seconds? 10? Okay okay, let’s even say 30 if you’re a girl because of that hard-to-reach zipper in the back on that sexy peplum. Or if you’re a guy and wearing a button up…there a lot of buttons.
How long does it take me? Maybe… Three minutes let’s say. Could take 5 if it’s a tight shirt.
My point here is that a lot of people don’t realize how fortunate they are to be able to do a simple task such as picking a pencil off the ground. Or getting out of bed in the morning.
There are things I’m capable of and things I’m not. And I’m aware of most of them. And if it’s one word I hate… It’s dependence. Depending on other people is shitty. I appreciate every single stranger that has opened a door for me, or every one of my friends for coming to my rescue in a dire need of help.
But there’s two things:
1. There’s nothing I can do about it…and it just means I’ll never get lonely pretty much. There’s a plus!
2. Even though there are things I am absolutely not capable of, I ALWAYS think of the things that I CAN do. I’m not trying to brag but I love that there are so many things I am capable of doing myself. And i know I can do so much because I actually try and do it before saying “I need help.” Which more people need to start doing.

People with disabilities create this invisible line of limitation created by their own minds. For fucks sake people. The more you don’t do, you’ll end up losing the ability completely. An ability you might not even know you had! So do yourself a favor and if you can do it, someone else shouldn’t be. Point blank.
Especially if you have muscular dystrophy. You all know damn well the muscle you don’t use deteriorates and is gone forever. So don’t get lazy and let someone else do something because it’s faster if they do it. Unless you’re in a rush, you’re better off doing it yourself.

And I’m not here to lecture anybody. Just something I’ve noticed before. Also, I just hate seeing my friends get weaker and weaker every year.

I will not let my life be dependent on other people when it’s not needed. I create my own schedule with my abilities. It’s either that or I need to work around other peoples schedules, which is never fun.
This disease will not control my life. I’m controlling it. Every single day of my life. And I really hope others follow this motto too.

A quote that will forever be a part of my life: “Nobody has a disability. Everyone has ability. Let’s find it.”

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.

All my life I dreamed to be an actress. The idea of having my name known worldwide sounds so amazing. I doubt I’d be a good actress in the first place but still. A girl can dream.
Around my senior year of high school I started to actual give a flying fadoodle about my looks. And gained some confidence.
Now, I dream of being a model. I want to be THAT girl that changes the way a model should look. And I mean I somewhat have the face and have a great rack. And then there’s the chair.
Oh how could I forget. There’s no possible way a girl in a wheelchair can become a model. How ABSURD, am I right?
Not. Fuck the rules. Fuck the status quo. And fuck the next person that tells me NO (for a stupid reason of course. I take constructive criticism well).
I don’t mean to sound vein or anything. Everybody has dreams. This is mine.
My dream is to become a model, since I sure as hell can’t act. Being a model is pretty much acting without talking. Which I can do. Anyways. I want to become that iconic person that changes the way the world looks at people with disabilities. People with disabilities always feel like they cannot do something because of the automatic assumption that their wheelchair is the answer. That their wheelchair makes them not as accepted. Blahblahblah
All a wheelchair does is make a person stand out more, in a good way. Most of the time, that person has the best things to say and deserves to stand out. And people don’t see that.
I want people with disabilities to realize the potential they have. I want you all to see that people with disabilities have an equal chance of becoming whatever they want to be.
Well, world, that’s what I’m here for.
And I want you all to listen. And listen well.

My disability does not define me. I define IT. So don’t look at my chair and judge me. I’d rather you look at my cleavage if that’s the case. Nothing is wrong with my brain and I thank god for that everyday. I just hope you all can see that too.

thanks for reading (: