LMGTFY “Define: Disability Advocate”

Being a disability advocate means standing up for what’s right and genuinely educating people. It means to show society that if we come together we can fix a serious issue that is negatively affecting people with disabilities’ lives every single day or to show society that we can live an equally successful life as an able-bodied person. Able-bodied people will never be able to fully understand what living with a disability is like and that’s totally fine, that’s what advocates are for. To talk about the problems that we come across, address them, and explain to people what a possible solution can be or even just letting society know how it makes us feel so people can understand.

People are so important. And being able to advocate appropriately and sufficiently means everything for our future in the larger community. People are architects. People are pilots. People can be teachers. People can be doctors. These are all careers in which people serve other people, and in order to do that effectively they need to understand people of all ages and ABILITIES. Having a disability can be tough. Half the things that we think about, able-bodied people probably never have to think a day in their lives and that’s fine, too. Why wonder who’s going to help you get out of bed in the morning if you can get yourself up? Until an advocate talks about it and explains how tough it can be to find reliable, kind people to help them shower every single day… that’s when people start thinking about it. And that’s what we want. We want people to understand our everyday life so that when they work with a person with a disability in their career or even just a normal encounter, they know how to communicate with them and they can kind of understand what sort of struggles we may or may not be going through. That’s why people are important. Because every single day a new law is written, or new establishment is built, or new appliances are being made and people are finally starting to understand what sort of requirements need to be met in order for people of all abilities to be able to utilize these services. Most of the people that make these decisions are able-bodied and need to understand our needs in order to make adequate choices for the disabled community. And it wasn’t until advocates spoke up about lawmakers unfairly deciding how we run our lives and establishments not having ramps or elevators and appliances being specifically modified for able-bodied individuals that people started to take a step back and put themselves in someone else’s shoes.

Being an advocate for people with disabilities means finding a topic where able-bodied people may not understand the obstacles we have to jump through on a daily basis and breaking it down in a way that’s easily and empathetically understood without making them feel uncomfortable or belittled. To do this successfully takes patience, empathy, and understanding. Being an advocate also doesn’t necessarily mean I, personally, come across every single obstacle that other people with disabilities do. This is very important. I never want to make myself seem like I am less able than another person with a disability just to prove a point. There are people with disabilities that have more needs than I do and it’s one thing to address a topic to make others aware and another to make my life look like I’m jumping through hurdles every move I make. Everyone has their own opinions but being able to efficiently and respectfully talk about a topic, whether I am the actual one going through the issue is crucial. For instance, I do not personally need straws when I drink out of a cup and currently a controversial topic in society is whether or not straws should be banned for the sake of the environment. Though I don’t utilize straws, I see the need for them in the disability community. Whether it be because someone does not have the strength to pick up their cup, or a jaw contracture that might limit their range of motion making it difficult to drink independently. Just because I don’t use straws does not mean I can’t advocate for it. As an advocate, I understand the need and will fight to make sure that every humans basic daily needs are met. Being an advocate means respecting people with disabilities’ struggles or successes.

Which brings me to my next topic, being an advocate for people with disabilities doesn’t always have to be about struggles and daily obstacles. It can and should also be about successes. Some negative characteristics society thinks of people with disabilities is pity, sheltered, unintelligent, unsuccessful due to their physical and/or cognitive impairments. As an advocate, it feels so good to share with people that we can hold down a job, or win a medal, or be as independent as possible. If society sees that we are living with the glass half full, they’ll start to see people with disabilities in a more positive way.

Pleasing everyone is close to impossible. But having the ability to think about all perspectives can be helpful to reduce the amount of controversy. Though I want to advocate and make able bodied people more aware, I also want to be sure not to offend others with disabilities that may or may not be going through similar situations. In addition, I want to ensure that people trying to educate themselves feel comfortable and entrusting in my words to help them understand our view of the world in order to gain equality. I find that a lot of able-bodied people are very uncomfortable with asking questions or finding the right words to effectively and respectively educate themselves. Openly advocating allows people to realize that we are open to answering questions and WANT people to understand what our daily life looks like.

Empathy is the biggest common denominator in becoming a true advocate. Being able to address people with disabilities’ needs respectively and understanding that some people have never even talked to someone with a disability is the key to advocating appropriately. Though there is no right way to advocate, I believe advocating means to help society understand that there is more than one reality in this world. Helping others understand each other’s reality will lead us one step closer to equality.

Hear Me Roar

I didn’t even realize that my ENTIRE life I have been fighting for equality. Growing up I had to constantly fight back towards my parents and let them know that anything they let my brothers do I was able to do too. Just because I’m a girl, doesn’t mean I can’t hang with the boys or go to college or talk to who I wanted or dress how I wanted. I was constantly arguing with my stepdad when he tried to tell me my fitted T-shirt’s were too tight when they weren’t. Just because they barely showed curves of my body. As a child I didn’t even realize what I was actually fighting seeing as I was the only girl in my family besides my mom. I grew up with two brothers and all boy cousins but I’ve had this mindset the whole time. I’ve always known and fought for equality within myself and now I’m doing it with an entire country.

I attended the Women’s March of Chicago on Saturday and have never felt so united within our population. This was the most empowering day of my entire life. After Trump was elected, everything started to separate us. Our race, our gender, our sexuality, our religion, our abilities… but not on this day. Every single type of human that can breathe was represented on this day. Over 300,000+ Chicagoans cheered and marched and continue to fight for equality across all spectrums of our human race.

I grew up in a Muslim household. And growing up I always felt that people wanted nothing to do with my religion because it was too extreme or because it simply wasn’t anything like the religion they have or it was too conservative. On this day, a beautiful woman recited a part of the Qur’an that talks about how we are all one. At first I was nervous that people weren’t going to accept and enjoy the Arabic recitation but my friends told me how beautiful it sounded and the cheers afterwards were incredible. And then followed by an amazing, powerful speech by Asha Binbek of CAIR Chicago that reminded us that we are all warriors with a purpose.

I was also completely blown away by the amazing accommodations put in place for ALL disabilities. There were ASL interpreters, a wide screen with closed captioning, a special sectioned off area for those people and their accompanying friends to sit near the stage, assisted hearing headsets, and even loaner wheelchairs to make it easier for those who have issues walking far distances to go from the stage area to the entrance of the event. NEVER in my life have I seen such an amazing, inclusive, and efficient ADA services at an event before. I usually never use the ADA services at events because I feel left out of the crowd and it doesn’t feel like I’m part of the same energy as the rest of the people there. I was able to bring all my friends there, I felt safe, and I felt like I was still apart of the same energy if not more…. I also felt super VIP which is dope. 😏 AND the best part was that the disability services provided was put in place by a team of PEOPLE WHO ACTUALLY HAD DISABILITIES! This was the most accessible outdoor event in Chicago HISTORY. #AMAZING . I tell people day in and day out, “the best people to choose to talk about and create accessibility services are the people living the reality of it everyday.” And that was exactly this. A team of people with disabilities that made sure every single disability was accounted for. Truly incredible.

I would also like to add that the EmCee, Fawzia Mirza, was hands down my favorite part of the rally. I have a mini crush on this beautiful human. Her energy was contagious. Her words were powerful. And it was completely genuine. Talk about a pep rally…. I’m in awe.

I have never in my life been to any event that I truly felt and saw every type of human being included. Even incarcerated people. Im not going to lie, before this event I never thought about how incarcerated people do not have a voice behind bars, but they should. They have families and opinions too and should be heard. Every. One. Has. A. Voice. And it’s about time people start feeling comfortable to speak out. Women especially. We live our lives ignoring when guys cat-call or slap our asses but instead shouldn’t let it happen to begin with. And a lot of people just sit back and think “this is the way things are, but WHY?!

I’m the type of person that likes to stay neutral in most situations which is why I’ve never been a fan of politics or even talking about politics. I say “most” because I’ve always believed that everyone is entitled to their own opinion except when it’s downright wrong or someone isn’t being treated right. And that’s exactly what’s going on in our own country. It’s wrong. My eyes have been opened and it’s time to speak up. Change is difficult and a lot of people would rather keep things the way they are and stay quiet but if WE don’t change it someone else that shouldn’t have power will and it won’t be for the better. We all have power. We are the controller of our own tomorrow. Like Channyn Lynne Parker said during her speech on Saturday, “no one is coming to save you from Donald trump. The best way you can fight him is to get to the polls and vote. Your silences will not protect you. The only thing more frightening than speaking your truth is not speaking at all.” Society has become so acclimated to the injustices that is our reality that they don’t believe change is possible. But it is. And part of that reality is belittling women, and the dreamers, and people with disabilities, and the LGBT community, and Muslims, and incarcerated people. All of these people are HUMAN and have a say in what their own future looks like. It’s time for change. It’s time for equality. This is for the history books y’all. Knowing that there is a LARGE group of people out there that CARE and feel the same way you do with no judgement of who you are or where you came from, that is what America is about. #TimesUp #WomensMarchChicago

 

Sex-Abilit-y

So. I did a thing. I did a boudoir photo shoot. And I am flaunting it and proud! I did this shoot for many reasons. The first reason is for MYSELF and not for anyone else, but I’m happy to share it with you guys! The second is that I wanted to be able to do something sexy and not only feel sexy but I want to show people that it’s possible for people with disabilities to be sexy. The third reason is because the Groupon I found was a great fucking deal. Often times, people with disabilities are not seen as sexual beings and quite frankly it really pisses me off. One of the most popular questions I ever get when the subject of my disability comes up is, “Can you have sex?”

Yes. People with disabilities can have sex. Believe it or not. For those of you that don’t know how sex works……………. I won’t go there. BUT, it’s a ridiculous reality people with disabilities live in everyday. People with disabilities have to work twice as hard just to show people we are capable of being sexy or scoring a date or having relationships. Now, I’m not saying it doesn’t happen… but it’s not always as easy as it can be for able bodied people.

Why is this? Why does sitting down constitute the inability to be or perform sexually? We’re not frozen solid and our asses are not nearly glued to our seats.

Society has molded what sexy is, who sexy is, and how sexy is.

But it’s such a limited view of the reality of sexy.

I’ve come to a point in my life where I am confident enough to say that I am in charge of my own tomorrow. I am Muslim, so I grew up in a very conservative household. It’s interesting growing up in this sort of household when you have a disability because it makes it a little more difficult to find yourself, especially in America. For example, growing up I wasn’t allowed to wear shorts or tank tops because a woman’s body is not meant to be shown off. It’s a sign of respect for yourself and to God. Since I have a disability and need help getting dressed, I didn’t really have too much say in what I wore. Plus, my mom also had terrible style so it made it that much harder.

Anyways… being able to find myself and become confident took a long time. Surrounding myself with people that love you and themselves and can truly make the biggest difference.

Learning to love yourself is not easy. It took me a very long time to get to where I am now and it can be mentally draining at times. I love being able to feel good about myself and my body especially having a disability. I’ve got what me and alex like to call “SMA body.” I have prominent ribs, rods in my spine, hip and knee contractures. Not your typical hourglass body. This alone makes it hard for people with disabilities to feel sexy or pretty because of what society has perceived to be a perfect body. There are some people that go through extreme workout plans to get that perfect hourglass body and have that option. I don’t have that option. I don’t really have any options to change my body to look “beautiful.” Being able to accept your imperfections makes you feel and look more beautiful; because at the end of the day, your imperfections are what make you your own perfect. (Super cliché… I know)

I’m not a perfect person. I have my insecurities too, but I would just much rather focus on what I love about myself which ultimately helps me accept the “not-so-perfect” parts. This photoshoot wasn’t just a confidence booster for me. It helped me find another part of me. It helped me figure out that my wheelchair doesn’t always have to be a part of my image, physically and figuratively. Yes, it is a part of me but it definitely can mask some really great bodily features. E.g. My ass.

Kidding. Kind of. Not really. It’s a great feeling to show people that my ass actually isn’t glued to the seat…. mind blowing, I know.

For those of you that didn’t just scroll to the bottom to see my photos… thanks for reading (:

Crippling Reality Of Love

Letter to myself when I fall in love: 

You’re in a good place. I never thought this day would come honestly. Sure people tell you you’re pretty all the time but it doesn’t compensate for what love can make you feel. For years there was no one you were even remotely interested in. And other years you found yourself just settling for whatever came your way. It was all because you never thought it could or would become a reality.

You’re confident. It shows. Some may call you conceited. Sure. You don’t really care. But what people didn’t know was that you didn’t believe a man could love you. And see you for you. And accept your idiocy sometimes. And your weirdness. And dramatic rants. And your ADD. And lastly…. your disability.

It’s so fucked up because everyone knows you as this person that does not by any means let your disability get in the way of ANYTHING. Yet, love is the only thing in the world that made you mentally confused and torn. You tell yourself your disability isn’t what defines you. That you’re just like everyone else. That you can do anything. So why did you think this?

It’s because that’s the way YOU think. You are confident in yourself. But you were never confident in the male population. To think the way you think. To see the things you see. To accept you the way you accept yourself.

Sure you got along with guys and can make friends with the snap of your fingers. But to get a guy to see you in a way that’s more than just a cool girl to drink with… is very difficult. It’s a special kind of effort.

You had to love a little extra to prove you’re capable. To show him that it’s not scary to be with someone that has a physical disability. That, yes, you can have sex.

Enjoy the love he gives because you’ve earned it. You deserve nothing but the best. You deserve love and respect and honesty.

I’m proud you didn’t settle because you thought you had to. I’m proud you found yourself. I’m proud that you’re happy. I’m proud you finally learned what true love means.

Love,
Yourself

Perspective time.

All an able bodied girl needs to do is wear a low cut shirt and a mini skirt and walk by a man and instantly get looked at sexually. The love part usually comes after this initial encounter.

If I wore a low cut shirt and tight skirt and rolled past a dude it’s not like I can catwalk past him and strut my stuff. And the only ass he’s seeing when I roll past is 300 pounds of steel and wheels.

The more I think about it, I’m not insecure in myself finding love. I’m just skeptical about every guy that walks by. For some reason, I’ve convinced myself that I’m not capable of love. I convinced myself that a guy who’s trying to flirt with me is only doing it to be “nice.” I convinced myself that guys will have sex with anyone so that doesn’t lead up to love in my case. Because what guy would love me. Society somehow made me believe that no one will ever truly love me because of something I can’t control. But I’m wrong.

I’m not in love with anyone. I’m not sure I’ve ever even been in love, but everyone has their flaws and love is still everywhere. We can hold off on marriage for a while… but when I love something or someone, it’s strong and true. There are so many loving couples out there with baggage and flaws yet all that stuff doesn’t matter if it’s real and unconditional. It makes me sad that I actually feel this way. It makes me even sadder that it’s a common misconception that most disabled people feel.

A Letter To The Guy That Kissed Me Out Of Pity

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

ISO: Yellow Brick Road

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. (:

SMA Treatment Ahead

In less than a year, the SMA community could possibly have a drug!! We are that much closer to treatment.

For those who are completely out of the loop:
I have Spinal Muscular Atrophy (SMA), a debilitating muscle disease of the major limbs (arms, legs, lungs, neck, etc.) There are 3 different types of SMA, Type 1 being the most severe. Most children are on feeding tubes by the age of about 8. Those with type 2 usually were never able to walk. And those with type 3 can usually walk until the age of about 12. This disease does not allow us to gain muscle, only lose or maintain what we have. Through these clinical trials, results have shown babies actually reaching milestone goals such as crawling and walking and even something as simple as keeping their heads up. All milestones which type 1 babies usually never reach.

I’m overwhelmed by the steadfastly results and all the futures that are going to be saved and changed when this treatment becomes available.Now I know what some of you may be thinking and no this drug isn’t going to just magically make me walk. But it will allow me to gain muscle so I will be able to be more independent. My SMA is far too progressed to be able to expect a miracle out of this drug. I would need many of surgeries first so i don’t think it would even be worth it.

Having to rely on other people truly fucking sucks but I have no choice but to make the best out of it if I don’t want to be miserable every single day.

The main thing that sucks about relying on other people is having to use the bathroom. I can push aside hunger or a glass of water for an hour or two until my next Personal Assistant shows up, but having to use the bathroom and being forced to wait for it is the worst feeling in the world.

What I’ve learned from being in a Facebook group of other people with Muscular Dystrophy is that we all have similar struggles. And one of them is pee math.

Pee math is a mental algorithm we (those who cannot use the bathroom by themselves) created by the time we got our first wheelchair. So probably around the age of 3. Pee math is deciding how much to drink before your next Personal Assistant is scheduled to come help you. Pee math allows you to learn very important things about yourself…. aka how long it takes for your body to digest things. Mine takes an hour or more. So if my PA gets me up at 9am and the next person isn’t scheduled until 3pm, I would drink lightly or only if I was extremely thirsty until about 1:30. Then I wanna start drinking as much as I can to make sure I get all my fluids in but am able to release it all when I have someone there to assist me.

It’s very shitty I know. But it’s a lifestyle I’ve subconsciously accustomed to.

Well. Back to the drug that’s hopeful to come in the next few months.

I am beyond excited that I will finally be able to work out and actually feel like I’m improving myself. Right now, without the drug, I should be doing physical therapy everyday but I’m so discouraged by the fact that I’m never able to gain anything from it. When this drug comes out I will be able to buy cute workout clothes and actually use them for their purpose….. real talk. So many cute things. But seriously, I might just become a gym rat. And I’m excited.

I’ve lived my entire life in a wheelchair and finding myself and making something of myself. And I’m proud of that person thus far. Though, I’m not going to lie, I absolutely have spent nights wondering what my life would be like if I did not have SMA and could walk… but I’m also not crying at the fact that I can’t or will never be able to.

This drug is really exciting to me because I will be able to gain more independence, even just by the simplest of tasks like opening a door on my own. My main focus goal in the long run will to be able to transfer myself in and out of my chair. Specifically to be able to use the bathroom on my own. It is the most difficult yet simple task in my life that holds me back in any way. To have to make sure that if I want to travel any place I will need someone to be there to help me use the bathroom is one of the hardest obstacles I have to deal with on a daily basis.

With this drug, I will work my ass off as much as I’m allowed to- to get to my goal in the long run. My independence is the most fundamental aspect of my present and future.

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

Wanna-Be Couch Potato

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.

I Believe In You

“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)

Accomodation Proclamation

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.