Author: sawsan

Thank you. Thank you for telling me the truth. Thank you for not wasting my time in trying to be your friend or anything more. Thank you for showing your true colors. Thank you for not being fake. Thank you for squeezing out the little ounce of faith I had in the male population to a pulp.

I have never ONCE in my entire life even considered the possibility that the people in my life would ever do something for me out of pity. And you thought that it was okay to kiss me, out of pity, and then TELL ME that it was out of pity AND THEN not even have the guts to give me the reasoning. Probably best I don’t know.

Even after confronting and asking you to explain yourself, you refused. Chose to end the conversation instead of even attempting to save it. Had absolutely no interest in trying to mend our friendship. To make me not upset, to even try and take back what you said. And with no closure…. this left me to openly analyze your actions. My analyzation led me to believe that you kissed me out of pity because you probably think that I can’t find another man….specifically because of my disability. There isn’t too much else I could link to your sense of pity. Especially since you agreed to being my best friend’s date to an event without hesitation considering you guys haven’t even been talking regularly or ANYTHING. So was it pity date too???

The fact that you look at me and feel pitiful makes me really wish I had the ability to kick you in your undersized knads. The fact that you could look at me and feel pitiful makes me believe you think you’re better than me. The fact that you THOUGHT I had feelings for you AND kissed me out of pity makes you scummy and rude and a coward. The fact that you felt that way makes me realize what kind of person you really are.

LOL. This is actually all so hilarious to me because I am probably one of the least pitiful people EVER. My life is fucking amazing thanks to all my friends and family, I’m successful, hot AF, and live on my own. As far as I’m concerned, I’m kicking this disability’s ass and your act of pity has done nothing but make me angry and skeptical. Skeptical at the fact that I truly thought you were a genuine, nice person. But you’re not. Skeptical about the type of person you actually are.

I pity you for being so uneducated. I pity you for having such a big head. I pity you for believing that I needed you. I pity you for being rude and cowardly. I pity you for losing a lot of respect from not just me but my close friends too. I pity you for being the subject of this resentful blog post.

Next time you kiss someone out of pity, do them a favor and DON’T. I think you should really question your own sense of self before deciding to pity others that don’t deserve pity.

Sincerely,

A non-pitiable person

Looking for an accessible and affordable apartment in Chicago is close to impossible. I came up with a list of requirements while searching for an accessible apartment which able-bodied people don’t really need to think about as far as accessibility goes:

1. Price: for obvious reasons. Note: the cheaper it is the more inaccessible it is because it’s usually a really old building.

2. Neighborhood: Is it safe?

3. Distance: How far is it from my job? (less than an hour is ideal travel time)

4. ACCESSIBILITY:

• Is there stairs to get in the front door of the building?
• Can I get into the building/open the doors by myself?
  • Are there push buttons?
  • Is there is a fob or a key?
    • If it’s a fob can I reach the swipe device to unlock the door? And then can I open the door myself in the time allotted before it locks again?
    • If it’s a key, can I reach the key hole? Do I have the strength to fully turn it to unlock it?
• Is there an elevator? (if not a first floor unit)
  • Can I reach/press the elevator buttons by myself?
• Can I get into the unit by myself?
• Is the door lightweight enough so I can open the door to get out of the unit myself?
• Are there stairs in the unit?
• Is there a walk-in shower or just a tub?
  • Can my shower chair fit in the shower/tub?
  • Does the shower have a hose shower head?
• Can I reach at least one sink in the unit?
  • Can I turn that sink on by myself?
• Can I fit through the doorways?
• Can I fit in the bathroom? Or will I have to leave my chair outside the bathroom and have someone carry me inside forcing me to use the bathroom with the door open?
• Is the toilet the correct height?
• Is it spacious enough?
  • Will I have to get a twin sized bed to make sure there’s room for my chair to move around in my bedroom?
• Is the kitchen too narrow?
• Can I reach the light switches by myself?
• Are the buttons on the stove/oven low or high?
• Is the microwave over the stove?
• Is there a close transit stop near by?
  • Is that transit stop accessible?
    • Is the transit stop that lets me off at my job accessible too?
• Can I make extra copies of my key or do I need to find alternative ways for my PAs to enter my apartment?

Imagine looking for places online and you find the PERFECT place, from the pictures and description provided. Now imagine that happening even AFTER you find a place that’s listed under the “wheelchair accessible” filter option. So much excitement and faith and enthusiasm for these seemingly flawless finds. Then imagine calling the realtor to make an appointment for a viewing and ask to confirm the accessibility and they tell you that it’s a three-story walk up or there are steps to get in the building or that there’s steps in the actual unit… every single time. The amount of false hope I’ve had in the past two years of searching for apartments really puts a damper on things…

More accountability needs to happen and false advertising needs to stop. What twisted definition of ‘accessible’ do they have that gives them the right to listed as such. Or do they list it as accessible to guarantee it will pop it in more searches?

Some of these I understand can be changed or tweaked after signing but there’s a couple of factors that come into play here. For one, that’s more money I’m forced to spend for this that able-bodied people don’t need to. Second, although you are allowed to renovate your apartment, realtors usually want the apartment put back the exact same way we found it. Which is in turn, is financially counterproductive unless I plan on staying there for more than…. let’s say 5 years at least.

Now let me go into a little more depth. Yes, the ADA does require buildings to be accessible. But buildings that were already built before this law came into play basically get a “get-out-jail free card.” In Chicago, as if you don’t know already…. there are a lot of old buildings. These older buildings are in my rent price range but usually walk-ups. They also are much smaller so even first floor units wouldn’t work.

For a two bedroom can range anywhere from $600 to $5,000+. Believe it or not. In order to find all these requirements would be typically somewhere in the $1,100+ range…. per person…

Yes, I have a job. But I’m definitely not nearly making a six figure salary to be able to afford something like that. Especially since I’m also still pretty fresh out of college and taking care of some of those bills currently.

Now, you might be thinking, what about subsidized housing? Well, for one I would rather not live in a building with all disabled and old people. Honestly, I think of disabled people as our own race. I don’t want segregation. I want diversity. Inclusion. People my age. People that are able-bodied. People of color. All types of people. ALSO, subsidized housing is for people with low-income. Which I don’t qualify for with my full-time job. It really grinds my gears to know that just because I am disabled and need housing also requires me to have low-income. I don’t even have the option to live in subsidized housing even if I wanted to. So there’s that.

I am an independent, middle class woman trying to fit normally in society with a disability.

I also don’t believe that anyone should settle. If I’m going to be signing a contract and locking myself into anything, I better really fucking like it or I will not sign. I will not sign to any apartment I am not 100% in love with just because it’s the “only” option I can find. I don’t believe that’s fair to myself or a good example for others out there that may be in a similar situation as me.

My best option would be to just buy my own condo or house but unfortunately I don’t have the funds to put a down payment on one. It is something I plan on doing in the near future though! Definitely more cost-effective than renting in the city.

For now I continue my depressing search of the constant reminder that accessibility everywhere isn’t as acknowledged as it should be…

Also, if anyone is willing to help me pay for that down payment on a condo, please let me know. (:

Updated edit: Spinraza was approved by the FDA December 2016!

Do you ever have those days where you just want to say fuck the world and everyone in it. The days where you just want to bum around and watch Friends all day. The days you don’t want to talk to anyone and let your mind breathe. Not have to worry about the next drama-ridden “life crisis” someone’s going to throw your way. Not having to change out of your PJs. Not having to eat anything besides Cool Ranch Doritos and French Onion dip.

In the world of people with disabilities, it’s almost impossible to have a day like this. Everyday having to watch the clock and making sure we’ll be home in time for our next PA to come and help us pee at 3pm. And then again at 9pm. And having to talk to them while they’re there to prevent any awkward silence.

We don’t have the choice to not have company over or to not have a care in the world. In our world, our care is our world. Our world consists of having to constantly think about things like if I shouldn’t drink too much water to make myself not have to pee until my next PA comes in 6 hours. Or making a mental list of things I have to get done around the house that I need a PA to help me do, like mop the floors. Or taking out the trash that smells like last weeks jungle juice.

In our world, our care is our world.

In a way, it’s nice to have company instead of being a complete loner. But having a day completely to yourself with no interruption is close to impossible when you have to rely on people to completely relevant daily tasks.

“Dear Julianna” is a campaign that was created by adults with neuromuscular diseases to help kids with the same neuromuscular diseases feel more confident in the skin they’re in. Julianna is a 5-year-old girl with CMT (a type of muscular dystrophy) who ultimately wants to choose “Heaven” instead of living through a life with her disability in the event that she gets too sick and has to choose to fight through it or give up her life. This campaign was made to show Julianna, and other kids like Julianna, that life with a disability can be challenging but worth living and fighting for. These adults are sharing their stories and hardships within these letters and showing these kids that we are still living, and very happily, at that. I wanted to join the movement and wrote a letter to Julianna that I wanted to share with you. Here’s a link to the news story about Julianna if any of you haven’t heard of it or are curious.

CNN-Heaven over hospital: Parents honor dying child’s request

Here’s my personal letter to Julianna. Enjoy!

Dear Julianna,

Everyone is unique in their own way. Including you. And you should share that with the world. You are the best person out there that can tell your own story. Your story is like no one else’s. And people can learn from you along the way!

Every person with or without a disability is like you in some way or another, so you don’t ever have to feel alone. A lot of people are afraid of what others will think of them if they feel like they don’t fit in or are different. Just know that if you think you’re weird, the person next to you might be weirder and you’d have no idea. So don’t be afraid, the world isn’t as scary as people make it out to be. The world is only scary when we focus on all the reasons the world CAN be scary. We’re all trying to find our place in this world to make us feel like we belong. Your mission is to find your own happy ending. To figure out where in this world makes you happy. And your disability is only going to help you find that answer. Your disability will actually make you stronger. It will empower you to think differently. To be a keen observer of society. To really appreciate things that seems so minuscule like curb cuts or spacious public bathroom stalls.

I could sit here and tell you about my disability and how it’s helped me become the person I am today. But this isn’t about me. This is about you. I want you to really be able to grasp the person you are and embrace it. Just because you have a physical disability it does not make you any less of a person. It does not make you mentally incapable. It does not make you incapable of doing. And finally it definitely does not mean you can’t face obstacles that seem close to impossible for a disabled person. The key is to believe in who you are and who you want to be. You’re the pilot of this plane. Now, just think. Where do you want to go?

It’s up to you to decide how far you wish to push your abilities. Even if it’s just picking a pencil up off the floor. Are you going to wait for someone to come home to pick it up? Or are you going to try and do it yourself first? Using a back scratcher maybe? Or sticking tape to the end of stick/or ruler and grabbing it? Or what about living on your own as an adult? Do you want to live by your own rules and feel as independent as possible? Or depend on your parents for every thing? Do you want to put yourself out there and open up to the idea of finding PAs on your own? And living by your own terms?

Your disability is made out to what you make it to be. Don’t let your disability control you, you control it! If you tell yourself “I can’t,” then you won’t. If you tell yourself “I’ll try,” you’re brave. If you tell yourself “I will,” then you will.

Having a physical disability is completely subjective. There’s not a default way of completing a task. There’s no instruction booklet on how to tie a rope to a doorknob and pull the string to shut doors. Or how to use a broom to reach high things. There’s no single person that can tell you what you’re capable of doing or how exactly it should be done.

Just know this, just because you have a unique way of completing a task that’s different from able-bodied people, doesn’t mean you’re doing anything wrong and it doesn’t make you any less “normal.” Nobody is “normal” whether it’s clear to the naked eye or not. There isn’t even an accurate definition of the word normal when it comes to society. You do you. And be proud of your independence you’ve worked so hard to gain. Be proud that while everyone else around you is doing things in black and white, you’re doing everything in color. Be proud that you are you. Be proud that you found a way. Be proud that you believe in yourself. Be proud that you’re brave enough to face the world on your own. Be proud that you’re not letting your disability define you. Be proud that you have control.

While everyone’s posting pictures of themselves, I want to share a special symbol with you.

Before I tell you what this symbol means to me, I want to think about what it would mean to you. This is the 3E Love symbol. Stands for embrace, empower, educate.

The meaning of this symbol is created through your own interpretation.

To me, this symbol means acceptance. Independence. Unlimited possibilities. Happiness. Confidence.

This symbol, to me, reminds me that I am who I am and there’s nothing wrong with that. It shows me my disability does not define the person I am. It shows me that I am strong enough to do whatever I set my mind to. It shows me that I can’t give up when all odds seem against me.

So, my final words to you is to never stop trying. Stay you. You are not alone. And you, most certainly, can do whatever it is you set your mind to. As time progresses, society is becoming more and more accessible to the needs of people with disabilities. There’s always a way around an obstacle. Your job is to find the alternative path.

I bid you good luck on this journey. I hope I was able to shed some light.

If you believe in yourself, the rest of the world will follow.

Yours truly,

Saws.

If anyone is interested in reading more letters here is the link to the campaign.  Don’t be afraid to like and support the movement on Facebook as well!

Dear Julianna Facebook Page

Updated edit: CNN-Julianna Dies (June 2016)

It’s interesting when my friends help me to see how they think they should do it without instruction by using the same techniques they’re familiar with.

What I mean by that is, when a person comes to help me, they should technically ask me what way works best for me is. But I have some friends who have experience helping other disabled people, which is great. But there’s just one issue with that.

When I go by my friend Alex’s, and her friends help me, they automatically help me the same way as they would help Alex. But we are two completely different individuals who sit comfortably in many different ways. For example, Alex sits on the toilet sideways. I, for one, cannot and do not like to sit sideways on the toilet. Alex needs her sandwiches cut in 4, I do not. I like wearing my leggings with it stretched over my heel, Alex does not.

Each individual person likes and needs things done a certain way depending on their disability. Even if it seems like a small pointless detail, just think about it this way… If we were physically able to complete this task on our own, we would do it a certain way… Actually, in our head we map out how we would do it ourselves. And try to explain to our helpers as descriptively as possible how we like things done.

The best technique of all is being able to realize how the slightest of changes in helping a disabled person can make a worlds difference in that persons comfortability. It’s in both parties best interest to ask what technique works best for each situation.

Just because you help one disabled person, does not mean that technique will work for everyone.  There is no default here.

If you’re a chef and you cook everyone’s steaks medium rare without asking their preference, you’re going to have a lot of angry and confused customers.

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.

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…

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

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.

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.