Personal Bitches, I Mean Assistants. 

Today’s topic will be all about personal assistants. And some people may get offended but quite frankly I don’t give a flying fuck. As always.

This is a good read for any persons with disabilities looking to hire PAs or for personal assistants to get a good idea of what it’s like on the inside.

For those of you who are unaware, a personal assistant is someone that a person with a disability can hire themselves to help them do daily tasks. There is a program through the government that pays these personal assistants. Now, as a person with a disability, my job is to find these PAs. It is also my job to manage these PAs. Meaning I am the employer and the PA is the employee. Now here’s a list of annoying shit I’ve personally had to deal with and that I’ve noticed in general.

1. There’s a line between employee/friend.

In most cases, people with disabilities find enough trust in their friends to take on this responsibility. This could go either really well or terribly wrong. I’ve had both happen. In one case, one of my PAs is also my best friend and I’ve never had any major issues with her. On the other hand I’ve also had to deal with a psychotic bitch who does not understand the concept of confidentiality or selflessness. This PA, literally, just so happen to mix both her job and our friendship together so ignorantly that I was forced to fire her and end our friendship. Neither of which I regret. Also, along with this it is important for PAs to realize that no matter how close you are with the person you are helping does not mean they want any half-assed task you ask from them. My point here is, make sure your friend you are wanting to hire knows when each time they are with you it is either to hang out or time to get serious and help with everyday tasks. Also, make sure they know the extent of the job requirement. If you need that PA to help you shave the vag, I suggest you let them know or just let it grow. Your pick.

2. Confidentiality.
This is important! If I shit my pants tomorrow the last thing a PA should do is go blabbing about it. Like geez, you would think this is common sense to most people. There isn’t much to say after that. Pretty self explanatory. Zip it or feel my wrath.

3. Being able to address issues. Assuming we are all adults here, I would THINK if a personal assistant had an issue with the way I was treating them or talking to them or whatever, they would tell me. And I will do the same. Just because I don’t wear a suit and sit behind a desk everyday, does not mean it’s a blow off job like McDonald’s or Taco Bell. And I absolutely hate when I have to turn into full professional employer mode–but sometimes when PAs are not doing what is expected… I have no choice.

4. Working around schedules.
This is hard to do. Now, here’s the scoop. College is when it is easiest to deal with PAs and schedules mostly because college students are broke so not only do they want the money, but they’re convenient in the sense that for most college campuses everything is walking distance. Outside of college is a little tougher. This person could live next door or ten miles away. In either case, calling them last minute will never be advised or smart to do. Making a schedule for every single time in the day you’re going to have to pee is NOT easy. Believe it or not. It’s hard to say that everyday I’m going to have to use the bathroom at 5pm. It’s also hard to try and figure out when your PA is not in class or work AND figure out what specific tasks you’re going to need done at which times. You want to shower but your PA has class until 2? Sometimes, that’s just the way it is and it’s a bitch.

Following up on that…
5. Dependency. It absolutely SUCKS to have to schedule your life in sync with someone else’s. Not gonna lie, I’ve got it pretty easy because my main PAs rock and are there for me when I need it, schedule or not. But in general, having to live in the reality that you have to wait until Sunday to do laundry (because that’s when you scheduled your PAs to do it) because you can’t open the washer door yourself…. When you’re on your lastttt pair of undies…. And even though you’re home all alone for hours and can physically see the washer and dryer calling your name but can’t do shit about it. That blows. On top of that, this isn’t necessarily a job someone can call in the same day and say they are sick. Having backup PAs are ESSENTIAL but if one of my PAs called me at 10am when I was suppose to get out of bed at 11am to tell me they can’t make it to work…. Well I’ll let you know how long I’ll be stuck in bed for by the time I figure out who else can come and when… Just sayin’.

6. Don’t half ass what you wouldn’t half ass yourself. This is one of my biggest pet peeves when it comes to PAs. Only in the sense that… If you and every other abled body person in the world cooks their pizza in the oven, what would possibly make a PA believe I would want mine cooked in a microwave. I’m just trying to give a little perspective here. Having someone complete tasks for you, when in your head you would do it a completely different way is interesting to me. There are some things everyone has their own special or specific way of doing, in which case I would give my PA special instructions on how to do it… But just trying to get the task done as quickly as possible is almost never the answer.

7. Rewarding competent PAs. This is something new I’ve been introduced to and tried myself. There are sometimes when my life is completely a mess and I’m down to relying on one PA for five days and have to create a completely new temporary schedule. No matter how hard you try, there will always be the little cracks in the sidewalk that just make each day go by bumpier and bumpier. (<—–Wheelchair metaphor!) By the end of the five days, if I feel as though I’ve completely over worked or overwhelmed a PA, I do the best I can to make sure they know I appreciate it whether it’s verbally or by adding small bonuses to their next check. I think it’s a good tactic.

All in all, me and my best friend came up with the perfect way to figuring out which PAs will be the best PAs. There’s a simple rule of three we came up with.
1. The PA has to actually want/need the money they are making.
2. The PA has to give a fuck if you make it to bed or not each night.
3. The PA has to realize that it is a real job and a real responsibility.

Just because we can talk about all the guys on campus or in movies that we think are hot and are sharing secrets as if we are best friends, does not mean it’s okay for me to continuously let things slide.

Basically what I’m saying is that… In life you’ll have jobs where you have your strict bosses and your chill bosses. Personally, I’m not a strict boss but that doesn’t mean I’ll be cool with skipping a shower so you can go hang out with your friends at Beer Olympics. Unless I get invited, in which case this changes everything…

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Dear Parents,

Parenting is probably one of the most controversial topics in society… But I’m gonna tackle this one the best I can. 

I know I’m not a parent but here’s my perspective. 
Raising a child with a disability takes a toll financially, physically, emotionally, and mentally on any parent. You gotta get the right medical equipment: wheelchair, breathing machines, orthopedic braces… You obviously are going to want to find the best doctors for your child to live as healthy and strong as possible. You have to stay strong and can’t give up. It’s tough. It is….
But that’s one aspect of the child’s wellbeing. Next, there’s the actual growing part. Here’s where the arguments may stir up. 
Some parents need to realize what exactly their child’s disability is affecting. I cannot stand seeing some of these parents treating their child, who has a muscular dystrophy or whatever physical disability, as if they have something mentally wrong with them. It’s sickening to see these parents think their child is “special” or “inspirational” or “a hero” because they’re growing up with a disability. I do not agree with parents when they think their child has accomplished some amazing thing just because they’re growing up a little differently. They’re still growing. And learning. And playing. And you do not need to “over-baby” them with every movement they make. I get parents want the best for their child, but treating them as if they are puppies or trophy children is going to affect them negatively in the long run. They’ll grow up sheltered and scared of the outside world alone. They’ll think they’re not capable of doing anything on their own. They’ll depend on you more than they should. And lastly, they won’t live a normal life if the parent does not give them one. 
My mom never once treated me any differently or special because of my disability. I still got slapped when I was a brat and my brother still pulled and yanked my hair when we fought. She pushed me to go out on my own and take public transportation.  My mom has always fought for me to get treated just as equally as the next able bodied guy and she raised me to believe that I can do anything independently. She never babied me. She never held my hand every time I needed it. And she sure as shit does not think I’m inspiring anyone in this world. 
A child with a disability has just as much potential as any other child, these parents need to stop acting like their child’s disability makes them some sort of different or special  person. Just THINK about if you would say the same things about your child if he/she did not have a disability. 
My point is…some parents need to see that their child can grow up to be independent and successful even with a disability… It’s the parents job to teach and guide them. Not do it for them. And certainly not to treat a child who is 7 as if the child were 3. 
I don’t necessarily want to tell parents how to raise their child. All I’m saying is that I would not be where I am today if my mom spent every waking day by my side to make sure she was there to clean up any of my messes. And she definitely did not raise me thinking that I’m better than anyone else just because I have a disability that I have to live with. She made sure I was healthy, found me expert doctors, made sure I was okay medically… And lastly she raised ME, not my disability.  

 

Fill Your Glass

There are two kinds of people with disabilities.
The ones that find the optimism in their abilities, rather than limitations, and advocate the fact that their disability does not define them as a person.
And then there are the ones who are very adamant that their life sucks whether the optimists choose to believe it or not, BECAUSE of their disability. 

Now, here’s the real reality of it.
Yes. You were born with a disability.
Yes. It does make you “different” than the majority.
Yes. You are going to have to depend on others for some things.
Yes. In some cases, there is no cure.
YES. YOU ARE NOT ALONE.
No. Your life does not suck due to your disability. 

 Some of these pessimists also feel the need to announce to the world how badly their disability has affected their lives in a negative way. That to me is just a cry for attention. 

Here’s the way I see it…

There comes a time in someone’s life where they learn to accept who they are. And what they are. And where they’re going. Having a disability is just that. Something that needs to be accepted. Some people have trouble losing weight. Some people have trouble gaining weight. Some people hate their height. And some people can’t undo the fact that they have a disability. But it’s something we can’t change about ourselves. 

I believe that some people are so focused on the negatives that it completely eliminates the positives. 

I’m actually really glad that I was born with a disability. If it weren’t for my disability… I would not have the same personality. Or the same friends. Or the same mind process. Or the same dreams. I wouldn’t be Sawsan…

If I were to quickly forget the fact that I have a disability, I would think about how fucking amazing my life is. It might not be as easy as the next guys… But who said life was easy? Everyone has their own personal struggles, having a disability just makes ours a little more noticeable to the naked eye. 

Wheelchairs As Props…

I recently read an article involving disabled characters in movies who are not actually disabled and it got me thinking.
No. Actually. I’ve thought about this on multiple occasions.
Reading the article just made me realize how livid it makes me to see someone PLAY a disabled person. Like cmon, are there really not enough disabled individuals in the world to be an actor? Or do the real people with disabilities not have the potential? Or are the producers just lazy fucks and take the easy way out?
I’m sure these are all factors on some level but fuck that.
When I was little I had a dream that I wanted to become an actress. I wanted to be like Hannah Montana and Lizzie McGuire. I wanted the fame. I wanted everyone to know my name.
Scratch that. I still want to be famous. And I do want everyone to know my name. But acting may not exactly be my strong suit.
Anyways.

My point and message to the media world is that people with disabilities should play people with disabilities. Because when people like Eddie Redmayne WALK across that stage to accept a Golden Globe because he’s amazing at faking a disability he doesn’t have, it’s pretty insulting. Now I may be overreacting, but at the same time… I very highly doubt that in the casting call it said they were looking for someone preferably with a physical disability.

Try this on for size:

I found a casting call for a new that’s going to start shooting this summer. This is what the casting call says:
“Lead* Brian 30- 50 year old male preferably not athletic, office workeresque body. *must be able to swim* 35 ish white Male who just lost his job, his girlfriend broke up with him and his life is in shambles. He is a functional alcoholic, sci fi computer, and is a gaming nerd that goes to the sci fi / gaming convention circuits and hits the Renaissance faire and does what he can to escape”

Descriptive isn’t it? I actually wonder what Stephen Hawking’s casting call looked like. I’m sure there are disabled people in the world who want to be on the big screen.

Upon some small research I found out that Redmayne didn’t even get auditioned for the part. He was just offered it and accepted.
COME ON.
That’s not even giving others a chance. What if there were a swarm of people with disabilities lined up at the door waiting to audition for the part! I guess now we’ll never know..

I just want to see some more real disabled people in the media. To show that we do exist, we do live, and we do normal things. The media is the best way to send a message. And right now, the message people get about disabled people is sort of twisted. Our voices are little right now. And that needs to change.

Where’s your heart?

Today is the International Day of Acceptance.
Many of you may not know what that means. Many of you have probably never heard of it.
Well, I’m sure many of have you seen the wheelchair heart symbol somewhere. That symbol says a lot more than one can think. And to each individual it can mean something different.
To me, this symbol means equality and acceptance.
3E Love symbolizes me. And everything I believe in. And everything I stand for…or sit, for those of you who can’t help but crack a cripple joke.
Having a disability affects each person differently. I have grown to project my disability with confidence.
I have grown to accept that not everyone realizes my disability does not define me. Or my intelligence. Or my personality.
One day I hope to change that stereotype.
The stereotype that people with disabilities are automatically mentally challenged. The stereotype that people with disabilities only have their family, no able-bodied friends. The stereotype that people with disabilities are not capable of speaking or thinking for themselves.
I am able.
I am intelligent.
I can speak for myself.
I can think for myself.
I am aware of my surroundings.
I do have friends outside of my own family. That are able bodied and disabled. And see me for me, not for a hunk of metal on wheels.

Having a disability has not stopped me from believing in myself. Believing that I CAN. Believing that I AM able. Believing that nothing is impossible. Believing that there is a status quo that needs to be broken.

Because in the end, if I don’t believe in myself, how can I expect others to?

I just hope that one day, everyone else can see what I see….
A human being with a beating heart and a functioning brain.

If your heart isn’t already on your sleeve everyday, as it should be, at least wear it for today.

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Am I Wrong?

Do you ever just feel like there’s something on your mind you’re afraid of saying outloud? Fear of being judged. Fear of thinking that your thoughts will make you look stupid. Fear of knowing you’re the only one ever thinking whatever it is you’re thinking.
Honestly, our society is pretty fucked up. You can’t be fit without being called anorexic and if you don’t have a thigh gap you’re fat.
If you say you think you look pretty in a picture, you’re conceited but if you say “ew” you’re insecure.
This society is so judgmental and damn blunt about it.
Honestly, over the years I really stopped giving fucks about what anyone thinks. It wasn’t easy, but I somehow convinced myself that my thoughts are unique, not stupid. I taught myself that changing who i am is harder than just being myself.
Sometimes I think about how different I am to other people, but it doesn’t bother me. I think everyone’s differences makes them memorable in some sort of way.
Like having a third nipple!! If I ever met someone with a third nipple, my life would be partially complete.

I like to think that people remember me for my fucking fantastic personality… And if I’m lucky, my sailor mouth… But I’m pretty sure the wheelchair wins this competition.
Can’t blame them though, after all… It is bedazzled.

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Sorry Not Sorry, Continued.

Not too long ago I wrote a blog stating some of the annoyances that seem to follow people with disabilities. People aren’t always aware of their actions, but we are very aware. The smallest of things you wouldn’t even think twice about doing.
So I’m here to think for you. Listen carefully.

13. I am not an inspiration just because I am a disabled girl who’s gone jet skiing, or who’s traveled to New Orleans to party with drunk people. That does not make me an inspiration. I’ve been told numerous times how much of an inspiration I am just for living my life as anyone else would. Until or unless I successfully accomplish world peace, I am not “an inspiration.”

14. There have been two occasions in my life so far where random strangers come up to me and ask if they can “pray for me.” Both times I’ve awkwardly said yes but for one, IM MUSLIM. Which they don’t know that, I get it, but I never know what to do. They grab my hands and close their eyes with their head down and pray for me… And I just sit and wait for it all to be… I’m not dying…… And I don’t need God… Sure, I can’t walk but that’s just a little physical flaw. I’m not in pain or anything. It’s a nice gesture but it’s still weird. Please, just don’t do it.

15. Why is it that every time I’m with a friend who is also in a wheelchair, there’s always that ONE guy that says “ohhhh are you guys going to race?” We’re not six… And we’re not in NASCAR… Why would we race? The next time I see two people walking next to each other in the mall as friends I’m going to ask them the same thing… See their reaction. We don’t find amusement in those comments. Please, refrain.

16. Apparently, people with disabilities are not allowed to have friends.
Every time I’m with another person going anywhere, the other person is either my sister/brother or my mother. Never a friend. WHY?! First of all, why ask the relationship in the first place? Second of all, we don’t look alike. Third of all, what would a young 20 looking year old person be doing with a daughter who looks nothing like a toddler. Even if they thought i was 13… My “friends” look nothing close to moms. Also, on that note. I’m allowed to have friends who actually enjoy doing normal friend activities with me like shopping and eating. Believe it or not, disabled people actually interact with able bodied people.

17. A couple of occurrences that has happened to me is when people ask my friends questions ABOUT ME. For instance, one time I was making a friendship bracelet and this lady sitting right next to me asked my friend sitting across from us what I was making… I took the liberty of answering a question intended for me. Does a wheelchair also signify deafness? Or maybe they just think I’m not mentally capable of talking or understanding the world around me. Well world, I’ll let you know that I am aware. And I can understand what people say. And I can wittily respond if I must. I enjoy being as obnoxious as possible in public because people probably already have their own preconceived notions about me anyways. We all know they’re staring at the wheelchair. Might as well give them a reason to stare.

18. This ones kind of funny. I think it’s funny when I’m trying to fit through tight spaces and the world just thinks I’m some sort of wide load that needs to be escorted down sidewalks or something. Every time people notice me behind them about to pass them up they literally grab their children super quick, as if I had a gun, and squeeze up right across the store windows. Lol.. People, my chair needs a few extra inches than the normal width of a person to fit through places. The biggest difference is that I can’t tuck in my steel wheelchair stomach to make myself thinner and fit through tiny spaces. I’ve also been driving since I was 3, so stop making your children scared of wheelchairs by prying them out of my way.

19. I got asked this a couple times. “Do you sleep in a bed?” *FACE PALM*
Does it look like my ass is glued to my seat? Do I look like a vampire? Do you really think that I sleep in a sitting position every day of my life? I just don’t understand where this question seemed to be going. Or what answer they actually expected from me. Yes. I sleep in a bed and if the mattress is uncomfortable, it sucks for me too.

20. When people play with my controller unexpectedly and say “hey how do you work this thing” is probably my biggest pet peeve at all. DO NOT TOUCH A WHEELCHAIR PERSONS CONTROLLER. You do not know how to work it and if you dare try, you might just roll them into a wall and sprain their ankle. Or run over the person in front of them. Or push some tables. It’s not a toy, and it’s not something you need to know how to do. Seriously, I don’t grab your legs and ask them how you work those things. The way my wheelchair works is no ones business but my own. And even if you do know how to work it, the last thing I want is for someone literally controlling my life and moving me places I didn’t move myself.

For now, that is all. I will keep updating this list as the world continues to blossom with ignoramuses.

Have a fabulous day.

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I Use a String to Shut Doors.

A person with a disability has the keenest of minds and are very good at observing the world.
Because in the eyes of a disabled person, every move a person makes intrigues us.
The way people get dressed, cook, put things together, even something as simple as taking a glass out of a cabinet. And I honestly believe part of it has to do with the ability to fit in. The ability to do things the same way everyone else is doing it. Also, it’s interesting to see how people do things we are not able to do.
After years of trying to do things the “normal” way, I found many other disability friendlier way of doing things. Like using a broom to reach high things or a backscratcher to pick something off the ground.
As ridiculous as these things sound, they are the way that people with disabilities gain independence.

It’s interesting when you realize that able-bodied people don’t think twice when they do simple things such as getting out of bed in the morning.
They just do it.
To a disabled person it’s more:
“oh it’s 10:30am and I’m wide awake but my PA doesn’t come in until 11am, looks like I have to wait.”
“I wonder if my PA will be here on time.”
“What if my PA can’t show up?”
“Aw man I wish I could sleep longer but my PA has an early class and it’s the only time she could help me.”

Mind you, these are all the possible thoughts going through a disabled persons mind, and this is just for ONE simple task in the day. Getting from the bed to the wheelchair.

Independence is something disabled people have to strive for and build for themselves.
And we see everything. We see your abilities. And compare it to our own. Trying to find and think of a way we could possibly do these things ourselves.

Some obstacles are easy to overcome… Others, not so much.

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King Of Me.

There’s been a lot of backlash about Kanye’s recent incident at one of his concerts.
One thing I find great is that when the media shows some sort of degrade to people with disabilities, my entire Facebook feed is filled with people talking about it. And I honestly don’t think that’s how everybody’s Facebook looks.
The people I’ve met in my life have seen and helped and placed themselves in the shoes of those with disabilities.
I can honestly say that unless a person actually has the disability, there’s no way to actually know how it feels. To think how we think. To see what we see. My friends though, have a pretty damn good idea.
It’s hard to convey what we feel when someone like Kanye makes a person with a disability feel so outcasted. As if they don’t already feel that way.
I can honestly say that after watching the video of the concert I don’t agree with all the bad things people are saying about him. Don’t get me wrong it was a dick move and completely unnecessary. But I don’t think anyone paid close to attention to the ending. He found out the guy was in a wheelchair and immediately continued his concert….
my point: HE DIDNT PITY THE GUY

He probably didn’t pity the guy because he’s a vain asshole, but I could care less about him.
Disabled people don’t look for pity. It kind of follows them, and quite frankly, it’s really fucking annoying.

Everyone around me is always staring and judging and thinking about who am I and what I’m doing in the world. But I wonder if they look at the able-bodied person behind me and think the same thing.

I don’t agree with what Kanye did… But for once it ALMOST felt as though he treated the guy equally even after he found out he was disabled.

Just an opposing thought…

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Camp.

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.

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