Don't Make My Disability Taboo

WARNING: This may be a matter of personal opinion, but this is my blog and my opinion.

Often times I find myself being asked by children what is wrong with me, or what happened to me. Sometimes they whisper their questions to their parents instead of asking me directly. No matter what way these children ask, they are almost always hushed by their parents. I always tell the parents it is okay, and then try to explain why I use a wheelchair to get around. My explanation varies depending on the child's age. I want children as well as adults to know that it is okay to use different ways to get around. Some people walk. Some people limp. Some people roll. 

So parents, please do not hush your child when they are just trying to understand. It is one thing to ask why I am in a wheelchair because you are being nosy, but most children are just trying to comprehend the wheelchair. I truly feel that by shushing your child, when they are asking about one's disability, that you are adding to the stigma that people with disabilities are not normal human beings. 

Some people may not be okay with talking about their disability, but that is where you as a parent step in and explain disabilities to your child. Explain to them that some people cannot walk, so they use a cool device to help them get around. Explain to them that some people look different, but they still deserve to be treated with kindness. Explain to them that it is okay to be different. Explain to them that a disability can happen to anybody, so it is important to treat everyone with the same amount of kindness and respect. 

My disability is not silent or hidden, so please do not keep it silent or hidden from your child. You never know, by me explaining my disability to your curious child they may then spread the word to their friends. That child in their school who is a little bit different may then be accepted into a new group of friends. We are all unique in our own ways, but don't make my uniqueness a taboo.

I Just Make It Look Easy

I always try to see the bright side of every situation, but today is just one of those days. Life with a spinal cord injury is not all about good parking, and always having a place to sit. This shit is HARD! Just because I make it look easy does not mean it is. Remaining positive when you literally have zero control of your own body gets tough. Forgive me for having a bad day and being a little moody on occasion. This is how I vent, so here goes!

Imagine waking up every morning and having to wait for someone to help you get out of bed. My life revolves around waiting on people to help me. Imagine not wanting to ask for help because you don't want to bug your caregiver more than you already have. Imagine having to wait until someone is ready to help you with whatever because you rely on them to do anything and everything. I am beyond thankful for my caregivers who do everything for me. They get tired too. It has to be exhausting caring for someone's every need which is why I try my best to be understanding. I just get tired of feeling like I am burdening others by needing so much help.

Imagine constantly living with bladder infections because you have to use a catheter to pee. The one thing you need to live could be the very thing to take your life. Going septic from a bladder infection is very real. We can't constantly live on antibiotics, but who wants to feel like shit all of the time? I wonder if I even remember what it feels like to be 100% healthy. Imagine being terrified of catching a simple cold because you can't cough good, and it will likely turn into pneumonia. 

Imagine having to constantly adjust positions, and make sure nothing is rubbing or poking you. Pressure sores are so deadly, and a thing we have to constantly worry about. Imagine being so uncomfortable in your wheelchair, but being denied modifications because they are not covered by insurance. I have been uncomfortable on my wheelchair cushion for months now, but insurance will not cover the test to see which cushion will be best for me. I was literally told I needed to have had major pressure sore surgery to get that test covered. So guess where I am on my way to? To my first pressure sore in 10 years. 

Imagine living with constant pain, but constantly being told how lucky you are to be sitting all of the time. Imagine having a total working brain, but still being treated as a child because of society's ignorance about disabilities. Imagine strangers touching you asking if you can feel it. Imagine being reminded everyday of the worst day of your life because you are constantly reminded you are paralyzed. So please do forgive me for my bad days, but I am entitled to them. 

The list goes on and on. I may make this life look easy, but I wouldn't wish it on my worst enemy.

I Shine Brighter Than My Rims

Ten years ago, I never thought I would be anything more than just a girl in a wheelchair. I spent my days cropping out my wheelchair and using old pictures. Hiding behind a computer screen was easier than facing reality for my fourteen year old self. I constantly wondered, "Why me?". What did I do that was so bad in my fourteen years of life to deserve this? I had tons of friends and boys wanting to date me, but I lost all of that the day I started seeing myself as a set of wheels and not a human being. Many of you are guilty of seeing the wheelchair before the person, and many of you are in a wheelchair yourself. 

I can now proudly say, I stopped seeing myself as a set of wheels. Once I started seeing myself as a regular person, other people did too. I no longer look in the mirror and think how ugly I am because of these wheels. I look in the mirror and see a badass chick who has been through hell and still wears a genuine smile. It is all about perspective!

Sure, people still see the wheelchair first but I don't. Once someone gets to know me, they often forget I am even in a wheelchair. They don't forget because they can't see my wheelchair, they forget because who I am shines brighter than my rims. Nobody wants to be around someone who wallows in self pity, so I stopped being that person. Shit happens and it sucks, but we have to pull through. If you can't laugh at the misfortune this injury causes then you will forever be stuck in a sad place. I am not saying people can't have bad days, but I will always say it is just a bad day not a bad life!

 After ten years, I no longer question "Why me?". I know this happened so I can reach out to that fourteen year old girl and say it gets better. Time may not heal our wounds, but it teaches us to cope with them. Learn to love every part of yourself because every part of you is unique. I hope that no matter what anyone is going through that they look in the mirror and see the good not the bad. You only get one life, and if you don't love yourself then nobody will. As my dad says best, "Love yourself, fuck everyone else!"

Why Are You So Obsessed With Me?

It's one thing to be attracted to a hot girl in a wheelchair, but another thing to be attracted to a girl because they are in a wheelchair. In the wheelchair community, we call them "devotees". Technically they are called "wheelchair devotees" because they are devoted to people in wheelchairs, or better yet obsessed with people in wheelchairs. When I was first injured, I knew nothing about this fetish and fell victim to many of them. I am not one to knock anyone's kink, but when it becomes a creepy obsession damn straight I am gonna knock it. 

If you like a girl because she is a beautiful girl in a wheelchair, cool. If you like a girl because she has to use a wheelchair, use a catheter, has atrophied legs, has curled fingers, may have incontinence problems, and you just enjoy watching them struggle to do things, FUCKING CREEPY! Nobody should be turned on by someone else's daily struggle. I am sure this will piss off the creepy devotees, but it needs to be shared. 

What I find the most disgusting about them, is that they try to hide their fetish. I don't mind the ones who are at least upfront about it. I still won't talk to them, but I respect them at least. Most devotees create fake social media accounts, pretending to be someone in a wheelchair, to gain our trust. They will steal an actual wheelchair users photo and create fake accounts in order to talk to us. I fell victim when I was first injured, and gave info about my injury to many fake accounts because I wanted somebody to relate to so bad. I felt so violated once I found out what a devotee was and how much information I gave to so many of them. For them, any talk about someone's injury is the equivalent to dirty talk. They love to hear about what we can or can't feel/move, or how we use the bathroom, or how we struggle to do things. 

Not only do we have to be aware of the fake accounts, we have to worry about our safety from them. Some have gone as far as stalking wheelchair users. They will steal our photos and post them on fetish sites. Some will go as far as threatening your life if you do not entertain them. It is hard enough being disabled, and having to worry about our safety from someone obsessed with our disability is not okay.

I am writing this for the one's who are newly injured and unaware. I am writing this for those not in the disabled community who also need to be aware of what we deal with. I will say, not all devotees are shady. Some are very open and honest. This is just to bring awareness, so we can protect ourselves from harm. I never want to feel violated by these people again, and I will take every precaution to prevent it. 

I'm disabled not dead!

Recently I went to a concert with a bunch of different bands. I had a blast and got to crowd surf! I have had this crowd surfing thing in my head for about a week. I went out there and did the damn thing! However, that is not the point of this blog. There was a handicap section that was basically an elevated platform. I was allowed in that section, but only with one other person. I have experienced this at almost every concert I have been to. Why should I be limited to having one friend with me, while everyone else gets to be with all of their friends? Oh yeah, I forgot people with disabilities don't have friends they only have a caregiver! 

I understand not being able to have ten people with me in that section, but just one person! Really?? If that is not discrimination I don't know what is! Us people in wheelchairs are just that PEOPLE. We have friends that are not a caregiver. We want to enjoy the concert next to our friends like the rest of the world. Why should I be limited to how many friends I bring because your venue is not completely accessible? I should not have to argue with someone about why I should be allowed to have two friends with me. We were told no to me having two people with me. So basically, if I have two people with me either I sit alone or one of my friends does. Fun huh? NOT! 

I clearly managed to still enjoy the show, but I would have loved to see the show with my friends and not stare at butts the whole time. I refuse to let discrimination ruin my good time! Every venue should have several accessible areas, so we can enjoy it with our friends. The world needs to realize a disability does not mean we don't have a life. I am disabled not dead! We have friends. We want to enjoy life. We want to go somewhere without feeling like an outcast. We deal with enough everyday that we deserve a night out worry free. I should not have to worry about being separated from my friends, or people falling on me because they don't see me. I don't want to risk being hurt by not being in the designated area, but I refuse to be told I am only allowed to have one friend. Discrimination happens everyday, and our world should be more accessible. After all most of us will end up with a disability at some point in our life. Get it together world! 

Fuck your disability!

Since when did becoming paralyzed mean that your life was over? Sure, we may do things a little differently or require more help but I'll be damned if I let someone tell me my second chance at life should be wasted away laying in a bed. Doctors tell you from the get go that you will never live the same life, which is true in a sense. My way of not living the same life is to live a better life just modified. I refuse to live miserably at home missing out on the world around me. Shitty things happen to everyone, but it is how we handle those shitty situations that make us who we are. I spent two years of my life moping about being a quadriplegic and I refuse to ever do that again. I want to experience the good, the bad, the ugly, the love, the hurt, the fun for those who wish they had a second chance to just live. I have seen so many young amazing people die too soon, and I refuse to be dead while still living. 

People are so afraid to be hurt while living that they hold back so much. If you feel some way about someone, tell them! You may get rejected, but at least you tried. Rejection sucks, but you know what sucks more? Missing out on an amazing opportunity. If you wanna go to that party, go! If you don't have anyone to go somewhere with, go alone! You may meet some of the most amazing people. Go alone for those of us who can't! I wish I could go places alone, but I need too much help physically to do so. Since I can't go alone, I go out at every opportunity that I get. I go out because I want to have fun and experience things. It is too easy to sit at home feeling sorry for yourselves. 

Let me put this into perspective for you! I pee through a catheter. I can't even hold my own drink. I can't dress myself. I can't push myself around most places. I need help with EVERYTHING, but why am I gonna dwell on that? This is MY life! I only get one chance to be me, you only get one chance to be you! If you are unhappy with your situation, change it! You are in control of how you handle every situation life throws at you. I have been thrown one hell of an obstacle, but guess what? I grew from it! I no longer allow myself to be this wheelchair. Anybody that has met me knows I am the life of the party. I enjoy the moment because I choose to! You may see me as the girl in the wheelchair before you meet me, but after you meet me you know I am so much more than that. I am so much more because I choose to be. I will never let my disability define me. I want everyone to know I am disabled, but I am not my disability. Everyone has a form of a disability, and a bad attitude is the biggest disability out there! 

How I Gained My Wheels

I was a fourteen year old girl, finally allowed to go to her first party with her friends driving. I don't remember much of that day, but it was March 3, 2007. I spent the majority of the day on the phone with my best friend, at the time, discussing the party we would be going to that night. We were to be picked up at my house by our friend and his older friend who would be driving. Things didn't go as planned and my best friend could not go with us, so I decided I would go without her. One thing I do remember about that night, is that I told my parents I had a ride home when I really didn't. However, I was not worried at all about how I would get home. It was like I subconsciously knew I wouldn't need a ride home.

After spending hours getting ready, my friends came to pick me up. I said goodbye to my parents and got in the backseat of the car. I had only met the guy driving one time before, but my good friend was in the passenger seat. We had to stop at my friend's house to pick up his sister. His other sister did not have a ride to the party, so we decided to take everyone. There ended up being seven of us crammed into a Chevy Impala. The guy driving and my friend were still up front. In the backseat the order from left to right went two girls, me, a guy, and a girl on his lap none of us had seatbelts on. As we were headed to meet everyone else at the grocery store, I remember us girls going back and forth about how cute each other looked. That was the last thing I remember before waking up on the ground which I will get to soon.  

According to the police report and witnesses, the driver was going around 100mph on a residential street. He ran a red light and hit a huge dip in the road that caused the car to go airborne. The car hit a telephone pole so hard that the car split in half. The motor part completely separated from the car. The impact caused us four girls to fly out. Two girls landed on the grass and the girl to my left landed on the sidewalk with me on her back. I have no idea how I landed on her, but thanks to her I survived. We flew about 100ft from the car. She sadly died on impact. Out of respect for everyone involved, I will only speak about her death and my injury nobody else's. Just know everyone else is alive and well. 

Next thing I remember is waking up to a very bright light and a man asking if I knew what happened. The man informed me that I was in an accident and the ambulance was on its way. I asked him to call my mom and I gave him my home number. My parents arrived on the scene at the same time as the ambulance. I don't remember much during the first few weeks. Throughout that time, I was informed I shattered my C5 vertebrae and was now a quadriplegic. That is how I gained my throne.  

The Nice Girl

We always hear the saying "nice guys finish last" but what about nice girls? Nice girls give and give until they have nothing left to give. A lot of nice girls get pushed to the point of becoming cold hearted because they get tired of giving and receiving nothing in return. How do I know? I am one of those nice girls. I love to see people happy. I will give anything to make others happy even if that means sacrificing my own happiness. When you have been so broken that you can't even fake a smile, you never want anyone else to experience that pain. In return you do anything for others so they never have to experience being that broken. There comes a point where you have to realize that you should never sacrifice your happiness for others. They will just take that happiness and run with it, leaving you broken once again. 

In that brokenness you will learn a lot about yourself. I have learned that I am a fixer. I want to fix everyone else, but forget to fix myself in the process. Do you ever notice that some people only want to hear your problems and not share their own problems? This is not because they are nosy, it is because they don't want to burden you with their problems as well as your own. I do this often! I find myself listening and helping everyone else with what is bothering them, but never really seeking help for what is bothering me. I genuinely enjoy helping others and seeing them happy. I deserve the same happiness that I enjoy seeing everyone else have. I need to remember to help myself while helping others too. My advice to myself is to never become cold and never stop making others happy, but to never lose myself in the process. My happiness is just as important as the next persons. 

I have learned that if someone is not putting forth as much effort as you are, you need to let that person go. Every relationship should be equal, whether it's romantic or not. If someone says one thing but does another, believe their actions over their words. We tend to fall for words and forget that actions speak the loudest. If that boy doesn't wanna bring you around his friends and family, he doesn't value you enough to stick around. If that boy makes you feel like you will never be as good as his ex, believe me you won't ever be in his eyes. If you aren't being shown off like he's proud to have you, he isn't proud to have you. If your friends don't include you in their plans, they don't want you in them. If people only hit you up when they need something, they really are just using you. If you are putting forth all of the effort, end that relationship please. ACTIONS baby girl, they say it all. 

Now I am not saying to stop being you and loving hard, I am just saying that love is only for those who deserve it. I know this post is all over the place, but this post is for me. For the girl inside of me who is questioning where I went wrong. The truth is I didn't go wrong with my love. I stayed true to myself. I only went wrong by not loving myself enough to see I was losing myself by giving all of my love away, and not keeping any for myself. Now here I am putting myself back together and learning from my mistakes. Here is my promise to myself to never stop being the nice girl, but to be just as nice to myself in the process. 

PSA

As a woman who has been in a wheelchair for ten years, I have heard some of the dumbest comments. I realize not everyone is aware of how rude they are being with certain comments, which is why I am here to educate you. For some reason people lose their mouth filter when they see someone in a wheelchair. Maybe my wheelchair says "Say anything to me." and I am unaware of it. Regardless, if you see someone out in a wheelchair please remember we are humans who require respect just like you. With that being said, lets discuss some things not to say to a roller. 

1. "You're too pretty to be in a wheelchair."

Do not say this! It is NOT a compliment! I have heard this comment so many times. What does it even mean? Are pretty girls not allowed to break their spines too? Do pretty girl's spines have some sort of sparkly super protection around them? I don't get it! Pretty girls get hurt too!

2. "You're pretty for a girl in a wheelchair."

Umm...thanks? This is such a backhanded "compliment". Why can't I just be pretty? Why am I only pretty for a girl in a wheelchair? If I'm sitting on a couch, am I no longer pretty? I require these wheels to get around they are not permanently attached to my ass! I am pretty with or without my wheelchair, thank you very much!

3. "Can you still have sex?"

Yes, people seriously ask this! My response is usually, "No, when you break your neck they stitch up your vagina too." or "Yes, but not with you." Now this is usually asked by drunk idiots at the bar, but no matter how drunk you are this question is never okay. Imagine if I just rolled up to random people asking them if their goodies still work. It would be pretty comical, but I would definitely deserve a punch to the throat. I get it people are curious, but google kills most curiosity give it a try!

4. "What's wrong with you/your legs?"

Nothing, what's wrong with you and your brain? If you want to know why I am in a wheelchair, you can word it way better! Don't ask me as if I have four legs or two heads. Simply start a conversation with me and after we have had a normal human to human conversation ask how I ended up in a wheelchair. Most (not all) of us rollers don't mind educating you walkers if you treat us like a normal human being first.

5. "It's so good to see you out!"
If you don't know me then why are you happy to see me out? I once had two girls come up to me at a bar and buy me a shot because they were happy I was "out of the house dressed cute". I definitely took that shot because I deserved it after being nice to their ignorance. Actually, if you feel the need to say something stupid please follow it up with a shot! I understand people may think it is good that I am not at home hiding from the world, but don't interrupt my fun just to tell me you are proud of me when you don't even know me (unless you have a shot for me).

6. "If you just think about it hard enough you can walk again."
Oh, is it that simple? I had no idea! It amazes me that people think in my ten years of being paralyzed I have not thought extremely hard about moving a limb. It is not that simple! If it were that simple nobody would be paralyzed. I don't care if your cousin started walking that easily after being paralyzed. Every injury is different. No two spinal cord injuries are exactly the same. 

7. Do not give "props" to the guy I am out with.
Yes, as a quadriplegic I require extra help with things that not everyone is willing to do. With that being said, whoever I am out with is with me because I am a damn good time! They do not deserve props for bringing me out in public. If you don't see yourself being out with me that is your loss. Instead you should give us both props for dealing with people like you who think I am less deserving of a man to take me out. 

8. I can speak for myself!
I guess this one is more of something you SHOULD say to a roller. I can speak for myself, so you don't have to speak to whoever I am with about me. I can answer questions for myself. Believe it or not I can actually think for myself too! Also, I can hear just fine! There is no need to yell.

The list can go on and on, but my arm is tired from typing. You get it! Basically when you see someone in a wheelchair treat them with the same respect that you treat an able bodied stranger with. I understand as humans we are naturally curious, but we can be curious and respectful.

Viewer Discretion Advised

    How ironic is it, that I write my first two blogs then get thrown right back into those same emotions a week later. I wanted to write a new blog once a week, but last week I found myself with a mind full of self doubt. My goal of this blog is not to post strictly negative things, so I decided to skip a week to figure my shit out. Then I remembered we are all human and you all love me because I'm real. So lets get real! 

Since all this wheelchair shit happened to me, I have had a hard time opening up and trusting people. Why? Because they always fucking leave! Always, no matter what they promise. I know, I know, Debbie Downer here! So in case you haven't figured it out yet, I got dumped. A year and a half down the drain over one simple saying "I wanna be alone." Those words fucking suck coming from someone you love. I guess I was raised differently, when shit gets rough I surround myself with people I love instead of push them away. Everyone handles things differently, and I have nothing bad to say about the guy. He's amazing and it was great while it lasted (even if I wasn't ready for it to end)! I have learned a lot about myself in this week going through this and am only gonna learn more as the reality sets in. 

I found myself wondering what I could have done to be a better girlfriend. Maybe I wasn't comforting enough. Maybe I didn't say the right things. Maybe it was too much taking care of me physically. Maybe he wants someone who can take care of him physically. My thoughts kept going back to my biggest insecurity, my disability. I sulked about it for a few days off and on. I surrounded myself with my loved ones and of course they reassured me that he was making a mistake. That's their job as my loved ones. I want to believe them, but I have to believe it on my own not just because they say so.

I reread my other two blog posts and thought, "PRACTICE WHAT YOU PREACH". Truth is, I still love myself I just have my moments. I still think I am a bad ass bitch. I know I love with all my heart, so when things don't go as planned I fall a little harder. I know that no matter what I tried my best, and that is not always good enough. I sometimes find myself thinking I don't wanna open up to anyone that deep again, or love that hard. Then I think, why not? I shouldn't give up my best qualities because I got hurt. Hell, I've been hurt before and that's how I learned to love so hard. I'm a warrior, I haven't lost my throne and my crown of strength. I am still me, and even after all the hurt I have nothing but love for him. People are gonna hurt you, that's life, it's how you handle the hurt that defines you. Don't let that pain make you cold hearted. Let that pain teach you that your love is to be cherished, and if someone else doesn't want it give it to yourself. It's easy to become cold. It's not easy to stay warm and loving. Never choose the easy way, you won't grow there. 

I think everyone should love hard and hurt hard. Without the hurt we will never grow. It's okay to cry and it's okay to doubt yourself, but it is never okay to dull yourself because of it. Maybe I will be okay tomorrow and maybe I won't, but I will still get up and live. Sometimes you have to doll yourself up and pretend you feel that way on the inside and there is nothing wrong with that. Even if I don't feel that sparkle on the inside I will show it on the outside. I will not allow my heartache to make me cold. I will learn from it and grow from it. 

Cheers to the boys who break hearts and create stronger women!

The Girl In The Wheelchair

As women, we are constantly comparing ourselves to other women, and wondering if we are good enough. As a woman with a disability, I feel that these feelings intensify. When you are a little bit different looking, and require more help than you can give you tend to think you will never be good enough for the love you deserve. I spent years thinking that I will never find someone to help me cut my food, transfer me from place to place, help me go pee, dress me after undressing me, or turn me in bed. Years wondering who would want to introduce the girl in the wheelchair to their family and friends, or who would want to take the girl in the wheelchair out in public. I allowed myself to become the girl in the wheelchair instead of Kaley. I find this trend of becoming just the girl in a wheelchair very popular among women with disabilities. The internet becomes our safe place because we can hide behind old, and cropped photos. We can even pretend this wheelchair doesn't exist. Believe me I have been there. I allowed men to speak to me however they wanted just because my insecure self wanted that attention. I settled and I know many of you have to. It is a heartbreaking trend that I hope one day can go away completely. 

We need to take control of our disability and stop letting it define us. Yes, we may look a little different and require more help, but we are still human. Once I realized, I was not just the girl in the wheelchair my life changed for the better. You'd be surprised how many people are willing to go the extra mile just to be around you. It definitely takes a strong person to date us, but we deserve nothing less. When you have suffered through something that nearly killed you and changed your life forever you deserve that extra love. You deserve to be shown off to the world because you are a survivor. Your struggles have made you beautiful inside and out. Your scars are beautiful because they tell a story. That wheelchair you hate so much has helped you become the person you are today. Maybe you are a little insecure, but so is that Instagram model. Not many people can say they have been through hell and came out with a throne and a crown made of strength. We deserve the strongest of people to love us because we too are the strongest of people. When you lose everything, you learn to love and appreciate everything that much more. You will never find a better lover than someone who has seen rock bottom and came back from it.

Believe me when I tell you that cliché saying, "You have to love yourself before anyone else can love you." is so true! A little over ten years later, and I can sit here proudly and tell you I know my worth. I know those of us who have more to love have so much more to give. I know that this chair I sit on is nothing but my throne to get around in. I know these struggles I face every day will not break me and neither will someone's opinion of me. I love myself and the person I have become because I was strong enough to become her. The scars tell my story and show my struggle to become me, and not just the girl in a wheelchair. Have you ever talked to someone who has a million scars both visible and on their heart? It is a beautiful thing. You are a beautiful thing.

I'm going to end this by saying, don't allow someone to walk all over you just because you can't walk at all. Roll right back over them! The extra love we require isn’t shit compared to the extra love we have to give! Love yourself and people will be drawn to you. Don't believe me? Just try it for yourself.