Cerebral Palsy

What Blogging Means to Me as Someone with a Disability

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Writing has always been a comfortable outlet for me. Maybe because I feel more true to myself when I write than when I try to vocalize my emotions or connect with people in-person. As a child, books and words meant safety. As a got older and experienced numerous surgeries related to my Cerebral Palsy, writing was once again the outlet I immediately went to because I felt like no one would understand the stream of consciousness going through my anxious, but inquisitive mind. I didn’t have my first surgery until I was 11, but I have this clear image in my mind of sitting on the brown couch in the den of my childhood home after my first surgery with a yellow legal pad on my lap and a pen in hand. I may have had both of my legs in bright blue casts with a yellow bar in the middle, making it difficult to move, but I didn’t let that stop me from doing the one activity that has always set my soul on fire.

Even then, I wrote stories about myself. The story of waking up in the ICU after surgery. The story of experiencing Christmas from inside the four walls of a hospital. The story of weekly visits from therapy dogs. The story of how bi-weekly arts and crafts were the only time where I forgot, if even for a minute, that I was in the hospital and about to undergo a surgery that eventually lead to nightmares, panic attacks, and sent my imagination into overdrive. But those stories weren’t just stories. They were my life. They were a chance to process through the fear, anxiety, and pain I was feeling without having to figure out how to speak my feelings out loud. They allowed me to revisit the experiences, while also being able to act as a spectator within my own life.

I think that’s why blogging has been so helpful for me over the years. It’s been an escape, while also being the place where I found my voice, became part of a community, connected with other people and families with disabilities, and found a place I belonged.

I’ve spoken about belonging before in the sense of being someone with a disability. To put it bluntly, it’s hard. The world is not made with disabled people in mind. Besides the topic of physical access, there are also areas of education, housing, employment, and access to healthcare. Each of those areas are much, much different experiences for someone with a disability than they are for an able-bodied person. In regards to education, I had to be sure the schools, colleges, and graduate schools I attended were accessible to me. For me, that meant small schools (since walking long distances was hard), limited walking distances between classes, and in the case of college, finding a school with a substantial disabled student population (so I could be sure they had resources I might need). For housing, it meant finding an apartment complex willing to install grab bars in the bathroom so I can easily get in and out of the shower. Employment-wise, it might finding a company to work for that was comfortable with and supportive of my disability.

Often times I feel like I spend so much energy figuring out to live in a world not made with me in mind that there’s no energy left to reflect on the positive things my disability has given me. For instance, I don’t know if I would have become a writer were it not for my disability. Growing up, I wanted to find something to do that I could enjoy that my disability wouldn’t hold me back from. For me, the answer was writing. Short stories, fiction, poetry, song lyrics….and eventually blogging about my life. It’s a place I’ve always known I’ve belonged…the writing community, that is. The blogging community. Right here, with all of you.

So, thank you. Thank you for giving me a home in this crazy, frustrating, but beautiful world we live in. Thank you for encouraging me to come back to blogging. Thank you for the comfort, support, and love. But most of all, thank you for reading. My number one goal as a writer has always been to relate to just one person or have one person’s perspective changed as a result of my words. That, to me, is the ultimate dream. And you wonderful readers have given that to me time and time again. It’s because of you that I keep writing. And because for me, writing is and always will be my oxygen, my passion, and the one place I feel at home.

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Disability and Love: It’s Not Impossible

/ TrailblazingWithCP / 4 Comments

Though I’ve touched on this before, it bothers me that there’s a stigma of disabilities and love within society. Maybe not a stigma…but hesitation. It’s there. I’ve experienced it first hand, and I’ve observed many depictions in the media where a disabled person finds love and it become a news story….or my personal favorite…the article about two people with disabilities getting married. Hear me out, though. There is nothing wrong with two people with disabilities being together in an intimate relationship. If you find the one you love, and they have a disability too, but they also love you right back, then that’s wonderful. However, please don’t settle for a mediocre relationship just because you want to be with someone. And don’t think that just because you have a disability you won’t find love. I’m living proof that’s not the case. However, that also doesn’t mean that a disabled person in a relationship is newsworthy. It’s not. It’s every day life. Unless you’re a celebrity, are you going to have an article in the paper about your date to prom? No.

Was I overwhelmed by the dating process? Yes. Was I worried that someone might not want to be with me because of my disability? Also yes. But you know what? You don’t want to be with someone like that anyway. If someone’s put off by your disability, they aren’t right for you. Simple as that.

I by no means am a relationship expert in any capacity. I just have my own experience as a disabled person trying to find a companion for life. My fiancé does not have Cerebral Palsy like me. Truthfully, I had concerns about being with someone who also had CP simply because I knew the amount of help I’d need physically as I got older, and I wouldn’t want to put someone in a position where they didn’t feel comfortable doing that. Would I have considered it if the person I fell in love with also had CP? Maybe. I’ll never know.

What I do know is this: Find someone who cares. Find someone who loves you AND your disability, not just you (i.e. they don’t have to necessarily be thrilled about your disability, but if they have doubts about your ability to love or be in a relationship because of your disability, you deserve better). Find someone who you can talk to openly about disability logistics (and that right there is the cornerstone to my relationship). If my fiancé and I couldn’t talk openly about how my disability impacts our relationship, we wouldn’t work. Getting to that level of openness with a partner could take some time, but if you haven’t had a conversation about your disability and how it would work in the context of a relationship after a few months, maybe there’s a reason. It’s also possible that you may have no idea how your disability will impact / affect a relationship. That’s okay too. When I first started dating my fiancé, everything was uncharted territory regarding relationships. But we got through it together. We learned side by side. Sometimes we had no idea how to handle certain things. When we went on our first date, he didn’t know whether to help me or whether I’d take offense to that. *Hint, hint*: He asked me what he needed to do / how I wanted him to help me, and I told him. Sometimes I needed an arm to steady myself; sometimes I didn’t. Either way, I communicated my needs to him. Because news flash: someone doesn’t know you need help until you ask. And it’s okay to ask. If you ask, and they say no, run. That person’s a jerk. You’re better off without them.

Love is possible as a disabled person. The smartest love advice I was ever given was: “Stop looking. Love will find you when you’re doing the things you love.” However, I’ll amend that advice to say this: It’s highly likely you’ll find love when you stop relentlessly searching. However, don’t expect love to fall in your lap, either. I had to do my fair share of work in meeting my fiancé. For instance, I initiated conversation first. I approached him first. I knew enough to know I’d likely have to do that, which some may be frustrated by. And it’s certainly not required. I just knew I needed to be proactive, and I knew I didn’t want love to pass me by.

I was lucky. I have found a person to spend my life with who doesn’t view me as a burden. It’s possible for others with disabilities too. Trust me, I’m living proof.

The Mobility Chronicles: CP Edition.

/ TrailblazingWithCP / 10 Comments

I was driving home from work tonight trying to determine what topic to touch on in today’s post. So much has happened since I was last blogging regularly that it is hard to even know where to begin. At the same time, I know exactly where to start: smack dab in the middle. Because that’s life. It’s not linear. It just happens, and how we handle situations can all be seen in how we respond to them.

To put it bluntly, my mobility has been decreasing over the past few months. But first, let me paint the whole picture. As a child, I utilized canes and walkers and braces on my feet to help me walk. However, for the majority of my life, I have walked unassisted…until now. A few months ago, I noticed I was having some trouble walking, or put more plainly, I was “freezing up.” Here’s the thing. I can walk, but I have fallen so frequently as a result of my CP that it is almost as if my mind keeps that thought at the forefront every time I take a step. You know what they say….don’t think about pink elephants, but what do you do? You think about a pink elephant anyway. Anyway, what I’m trying to say is that I feel like every time I go to take a step, I’m telling myself “don’t fall, don’t fall,” but as soon as that thought process starts, guess what happens? I’m typically on the ground within a few minutes. Therefore, that thought process in itself has made it hard to put one foot in front of the other without some kind of assistance. Even in moments where I think I’m okay, my mind reminds me again, and I can’t get it out of my head. It shouldn’t be a big deal. I fall all the time as a result of my CP. I should be used to it by now, but alas, it’s not really something you get used to, no matter how much it happens.

Coming to the conclusion that I needed something to help me be more mobile and independent was really hard. I fought it for a long time. I’m still fighting it now to be completely honest. But I reached a point where I realized: if I am going to safely get from place to place independently, I need some help (side-note: I hate, HATE asking for help. I need to get better on that). Anyway, a few months ago, I started using a walker (named Hugo because that’s a way better term). It sucks, and I still hate it, but Hugo helps me get from place to place without having to wait for someone to come along and help me get from the side of a building to my car, which was less than 10 feet away. Yes, that scenario really happened. Once I waited as long as an hour for someone to exit a building before I finally just gave in and crawled on my hands and knees to my car. It was insanely humiliating, but I didn’t really have a choice at that point. The longer I stand still, the stiffer I get, and the more difficult it is to move. And you know what? That scenario I mentioned…it didn’t just happen once. It happened at least 5 to 10 times before I realized I needed to figure something out. In case you haven’t guessed, I’m stubborn…and I value my independence more than anything. There’s something you must understand, though. For my entire childhood, the number one goal was walking independently, and I got there. I did it! So now…having to use something to help me get around makes me really mad. I feel like I’m moving backwards, even though I know that’s not the case. I’m 25. I shouldn’t need a freaking walker. And yet, here we are.

While I know Hugo helps me get from place to place, already being at a point where I have to use him sucks. See, I thought I had more time. I didn’t know this was going to hit by the time I was 25. And truthfully, the hardest part is thinking about what other people think. Even though in my mind I know others don’t care, I’m judging myself for it. I’m caring about what I think about the entire situation. And in case you didn’t already catch on to this, I’m really hard on myself. Internally, I keep tearing myself down for having to use Hugo. I feel guilty I think. Guilty I couldn’t have done more to prevent it. And just angry at the image of it. Walking with a walker was not something I ever imagined for myself. I thought I skipped that part. However, I know from experience that ruminating on “What if’s” gets you nowhere. Still…stopping that train of thought is way easier said than done. I’m trying, but I know it’s going to take time.

As of right now, I’m making a conscious decision to allow people to help me more and to actually ask for help when I need it. It’s probably once of the hardest things I’ve had to do. It’s not easy to change thought patterns at the drop of a hat, but I know one thing. I have to start somewhere, and I know my body will thank me someday for giving it the rest it needs. When I’ll start that? Who knows. I’ll let you know when I get there. At this point, I’m just taking it one day a time. That’s all any of us can do.

My Writing Is Getting A Facelift!

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I’m typically not one for New Year’s resolutions. My stance has always been that if you want to change something in your life, you don’t need to wait for a specific day of the year to make those decisions. However, at the same time, I get it. It’s a new year. A chance to try new things, commit to things you’ve strayed from, or just make a commitment to treat yourself and the people you love better.

On November 1, 2011, I started my very first blog: Life In The Blue Ridges, and to put it simply, it was not only a smashing success, but one of the happiest times in my life. Back in 2011, I made the commitment to blog every single day for entire year, and I did it. It wasn’t always pretty. Sometimes I had something to say, other days I didn’t. Yet, I still posted every day. Even on the days when the words just wouldn’t come, I reflected. I posted the song lyrics to music that had been stuck in my head, I posted recent photographs I’d taken, or I talked about the book I was currently reading. Through a year of daily blogging, I found something I didn’t know I was searching for: my voice and a community. Simply put, I found myself.

A lot has happened since I first began blogging a little over 6 years ago. I met the love of my life, I graduated from college (BA in Psychology), I got my Master’s in Social Work, and I’ve traversed the daily grind of living life with a physical disability. A lot has changed since I first began blogging, but one thing has stayed the same: my love of writing. However, I’ll be the first to tell you that my blog in it’s current state does not reflect my love of writing. Life happened. School was placed at the forefront of my life. I fell in love. My career was my priority.

As previously stated, the happiest time in my life was when I was blogging daily. I’ve come to that conclusion. And I’ve also realized that the joy of writing can only be felt by writing itself. I’ve tried getting myself wrapped up in my job, reading a lot of really good books, and just doing things that make me happy. However, none of those things have brought me close to the bliss and authenticity I feel when writing. So here I am….back in the blogging community…and making the resolution to myself to write every single day once again. How long that will go, I’m not sure. As of now, I want to set the goal of writing every day for a year. I did it once. I can do it again. I’m sure things will come up that may derail that a bit, but when that happens, I’ll come back to the blank page and type one word in front of the other. That’s all writing is anyway, right?

Happy writing, friends. Here’s to a new year, resolutions, and lots and lots of writing.

Dating With a Disability [Part 2]

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The initial dating with a disability post I wrote back in March was such a hit that I wanted to do a follow-up. I think sometimes society has a hard time understanding that people with disabilities want the same things everyone else does: love, success, lifelong friendships. And those things are attainable for the disability population. However, it may just mean there are more logistics to figure out.

In the case of dating, for me that meant thousands of questions were going through my head: 1). When should I tell him about my disability? 2). How will he respond? 3). Will he care? 4). If we get serious, will he resent me for what I can’t do? 5). If we get serious, will he feel like my caretaker?

Even now, after my boyfriend and I have been dating for 3 and a half years, some of those questions still surface. However, we’ve dealt with them just like we’ve traversed the rest of our relationship: with openness, frequent communication, and love.

When should I tell him: Honestly, it was answered on its own. Because my disability is visible, it’s not something I could hide. No, I didn’t have a “I have CP” tattoo on my forehead, and I have never introduced myself to someone by saying, “Hi, my name’s Amelia, and I have CP.” However, I’ve always prided myself on being open with people. The reality of my disability came out pretty early on…and even though I fretted over how the conversation would go, it went as smooth as though I had said, “My day was good, how was yours.”

How will he respond: My Cerebral Palsy mattered to him, but it didn’t all at the same time. It didn’t prevent him from wanting to date me. However, it mattered in the sense that he wanted to understand it enough to know how to help me when he could, which I was grateful for. More than anything, he wanted to know how living with a disability shaped the way I viewed the world. And in that moment, I knew I wanted to spend my days helping him to understand the world I lived in: the world of oppression, marginalization, discrimination…but also the world of a culture that has its own language, values, history, and perspective.

Will he care: He did. But he cared in the sense of, “It hurts me to see you in pain,” as opposed to, “I don’t want a girlfriend who has a disability.” Yes, it’s part of our relationship, but it’s not the only piece. It means we have to do certain things certain a little differently, but it doesn’t prevent us from loving each other. However, I will say it does take a special person to care in this way. You want someone to care enough about your disability that they see it as part of you, but not so much that it is the only thing they see when they look at you. I’m happy to say that’s what I’ve found. And honestly, each day it amazes me. Sometimes it still takes my breath away that I’ve found someone who cares enough about my disability that he has taken up the disability fight out of sheer love for me. For example, the first time my boyfriend became enraged when he saw a car parked in a handicapped space without an appropriate license or placard…I felt heard, I felt seen, and finally, I felt like I didn’t have to face the injustices of the world alone.

If we get serious, will he resent me for what I can’t do: Honestly, I still worry about this one. Since we are serious, it’s a thought that bounces around in my head pretty regularly. And since we are so open with each other, it’s also conversation we have often. Do I think he resents me now? No. Do I think there are things he wishes we could do together that my disability prevents? Sometimes, yes. The majority of those things have been centered around activities that require extended walking. However, about a year ago, when I invested in a mobility scooter, a new world opened for us. With my scooter, I was able to get out and be more active and not be as easily exhausted like I’d get if I was walking everywhere. Therefore, we’ve been able to enjoy things like going to the mall or walking around downtown, whereas previously I’d avoid those things because more walking meant pain…and pain meant both of us being unhappy. However, in another sense, sometimes I worry how my disability will impact me as I age. What if in two years I can’t do what I’m doing now? I’d be lying if I said I didn’t worry about it. But if I know one thing, it’s this: I’ll figure out a way to handle those obstacles as they come my way. I always do. It’s who I am.

If we get serious, will he feel like my caretaker: I still worry about this one too. It’s a conversation we have very openly, as neither of us wants to reach a point where we have a caretaker/patient relationship. Honestly, what’s made the difference is understanding and perspective. Are there things he has to help me with? Absolutely. But do I help him with aspects of himself that are weak because those are my strong areas? Yes. At the end of the day, that’s what it’s all about. The give and take. In my case, many of the ways my boyfriend supports me are physical in nature, but he’s also incredibly kind, loving, and caring too. When I look at a caretaker/patient relationship, I see it as very one-sided. And that’s not what our relationship is. It’s two people supporting and strengthening each other to be the best versions of themselves.

At the end of the day, dating with a disability is just the same as typical dating, but with a double scoop of openness, communication, understanding…and a dash of humor (because if we’re not laughing through life, what’s even the point).

Why My Disability is Not Your Feel Good Story

/ TrailblazingWithCP / 3 Comments

Throughout my life, I have been called inspirational, brave, and courageous because I live life with a disability. Many people have expressed how much they admire me. I used to just accept it. However, over the last few years, those kind of comments have really started to frustrate me, and here’s why.

Admiring me because I live with a disability and have scars and wake up each morning with chronic pain to simply live my life…it’s pity in disguise. This kind of admiration says to me: “Wow. If I had experiences like yours or lived with some kind of impairment, I don’t know if I could face that.” And what, I’m some kind of construct to measure against so you can say to yourself, “Thank goodness I don’t live like that.” Within the disability community, this concept is known as inspiration porn. As was stated in the hit-show Speechless, “It’s a portrayal of people with disabilities as one-dimensional saints who only exist to warm the hearts and open the minds of able-bodied people.”

Other examples of inspiration porn include stories such as the star athlete at a local school taking a girl with Down Syndrome to prom or images of athletes competing in the Paralympics with the caption, “The only disability in life is a bad attitude.” Seriously? Give me a freaking break.

I’ve had my fair share of these kind of experiences as well. When I was in middle school, every year there was a beauty pageant, and each grade was allowed 3 or 4 contestants. The contestants were chosen based on nominations and votes made by each grade, and when I was in 4th grade, I nominated myself but then changed my mind and stated, “Nevermind, no one is going to vote for me anyway.” Even now, I don’t know why I said it. Maybe it was rooted in my strong desire to be liked and have friends, but as you might imagine, my entire class heard the statement. And lo and behold, I was chosen to take part in the beauty pageant that year. While at the time I enjoyed the experience, now it simply fills me with disgust, and I wonder, “Did my classmates or school ever realize that by providing me with this experience, they were simply using it so they could feel good about themselves for doing a ‘good deed’?”

Years later, when I was in college, my dad and I were walking around downtown Asheville and trying to kill time before going to a concert at The Orange Peel, and an older gentleman came up beside me and started clapping and stated, “God bless you, sweetheart. Way to go.” I was floored. I stared at the man in disbelief and didn’t even respond. Looking back on it now, I wish I had said, “Honestly, saying something like that is incredibly demeaning. I don’t exist to provide you with warm and fuzzy feelings, and I am not here for your pity.”

Don’t admire me for simply living, for doing every day things you can accomplish without even batting an eye. Because to be honest, I haven’t done anything extraordinary. I have a college degree, I recently got my master’s degree, I have a full-time job, I drive a car, and I pay all my bills. But so have thousands of other people in the world. But are you going to walk up to them with a huge smile on your face a say, “Wow, you inspire me so much. I really admire you?” I highly doubt it. Just because I have accomplished those things while also having a disability does not make me admirable or courageous or brave. I am not your charity case or your feel good story. I don’t exist so you can put your life and obstacles into perspective. I am not here so you can pat yourself on the back and check off “do a good deed” on your list of life goals. I am simply doing the exact same thing every single other person in this world is doing: existing.

What My Life With Chronic Pain Looks Like

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Imagine waking up one morning, but before your feet even touch the floor, you can feel pain radiating from your hips and into your lower and mid back. You didn’t do anything differently the day before. You didn’t lift something too heavy or strain a muscle while exercising. This is just your normal. No amount of Advil, Extra Strength Tylenol, or deep breathing can ease the dull, yet persistent ache you feel throughout your entire body. As you surrender to the realization that today will be a difficult day pain wise, you get up, knowing that you can’t stay in bed all day, even though you’d prefer that over living in the hell that is chronic pain. You stand up, and while that feels like a feat in itself, the true test will be attempting to move.

You move your hand along the mattress and then transition to trailing your hand along the wall in order to make it to the bathroom, shuffling your feet slowly and cautiously. You do this because of how uneasy you feel. However, you know in the pit of your stomach that simply placing your hand against the wall won’t prevent you from falling due to your already unsteady balance. Right when you make it to the bathroom door, there is a millisecond when you know what’s coming. You see it play out as it has so many times before, but there is nothing you can do to stop it.

Your breath catches in your throat. As you fall, your arms shoot out in front you, trying to grasp onto a chair, a door handle, anything to prevent you from going all the way down. But your hands come up empty. You hit the floor, falling back-first into the door jamb. The breath is knocked out of you, there is a shooting pain coming from your hip joint, and you want to cry out. You open your mouth. Just as the darkness of early morning envelopes you, so does your own silence.

With shaky hands, legs that feel like jelly, and tears streaming down your face, you turn onto your hands and knees and push up with as much strength as you can muster, using the stability of the wall near you to stand back up. You’re standing again. You feel steady. But you know, in the back of your mind, it’s only a matter of time until it happens again. Until your body decides to let you down and you fall, again.

And yet, that moment, that moment of falling again and experiencing a pain that radiates like fire through your bones, that moment has not yet arrived. There is relief in the continuous shallow breaths you take as your world comes into view again. Your world is one of never-ending pain, but it is also one of gratefulness. Gratefulness towards the boyfriend who offers you his arm for support. Gratefulness towards the best friend for consciously slowing down her pace so you don’t feel left in the dust. Gratefulness towards the body that, no matter how painful, is still moving…still allowing you to stand back up, just one more time.

Learning to Drive With a Disability

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As I was entering my teenage years, my parents and I were unsure whether I’d be able to drive a car. However, as with most things in my life, I knew I wanted to drive a car, and I was going to do anything I possibly could to make that happen.

While I didn’t drive a car until I obtained my permit, I was driving as early as 5 years old. I used to drive my Barbie Jeep around and around my neighborhood for hours on end. I’d turn on the little Barbie radio in the Jeep and “floor it,” flying down the sidewalk in my hot pink Barbie Jeep. As I got older, my Barbie Jeep transitioned to a go-cart and eventually a four-wheeler, but the go-carts we had were always my favorite. I know I likely drove way too fast, but I remember my neighborhood used to say that they always knew when I had my go-cart out because they’d hear my laughter and screams all the way down the block. Therefore, when I eventually got behind the wheel of a car, I had years of driving practice already. It’d be a piece of cake, right? Not quite.

I have spastic diplegia cerebral palsy, meaning my CP primarily impacts my legs and causes them to be incredibly stiff. Due to the stiffness of my legs and because I knew that my legs had a tendency to involuntarily shake if my foot was placed in a particular position (called clonus), I was pretty nervous about learning to drive a car. I didn’t know if I’d be able to move my foot from the gas to the brake quickly or easily enough. I also didn’t know whether my legs would become tired quicker due to having to be flexed when using the gas pedal and brake pedal. I had been told by my physical therapist at the time that there was always the option to utilize hand controls to control the gas and the brake as opposed to using my legs. However, I also knew that I wanted to do my best to drive just like everyone else.

A benefit I had when learning to drive was the fact that I lived in a small town. Because of that, I practiced driving on dirt roads, empty back roads that hardly had any traffic, and through town where the speed limit was only 25 miles per hour. Typical kids learning to drive might have been frustrated by this, but I was not. I wanted to become as comfortable driving on country back roads as I could. In order to test my response time, we’d be driving around and my mom would say “deer” (proof that we lived in the south), and I’d pretend I saw a deer in order to practice slamming on the brakes. We learned pretty quickly that I had no problem moving my right foot back and forth between the brake and the gas (which was a major relief on my part because I didn’t want to have to utilize hand controls).

The most important thing for me when learning to drive was taking it slow. Initially, due to my own fears, I drove really, really, really slow, but that changed as I became more comfortable. Once I got my permit, took driver’s ed, and accrued a certain number of driving hours, I was ready to take the driving aspect of the test to obtain my license. And despite all the practice I had, I was completely terrified.

When I took the driving test with a woman from the DMV in the passenger’s seat, initially everything was fine. However, within a few minutes my legs started shaking so badly that it was difficult to keep my foot steadily on the gas. The DMV woman noticed the shaking and said, “Why are you shaking like that?” I responded, “I shake when I’m nervous,” not wanting to bring up my disability for fear of her using that against me when determining if I passed or failed the test. Upon hearing my response, she asked me to pull over so I could “compose myself,” though I knew that no amount of sitting still would prevent my legs from shaking. Eventually, the shaking lessened to the point where I got back on the road and completed the test. Once we returned to the DMV, the woman’s response wasn’t what I was expecting. She said, “You almost didn’t pass,” as opposed to, “Congratulations.” Looking back on it now, I still feel like she was just overall skeptical about my ability to drive a car.

Because of my disability, learning to drive wasn’t just about getting my license and having a car to drive. It was so much more than that. It meant independence. It meant feeling included as a functional member of society. But more than anything, it opened so many doors in my future. There have been a few instances where people have been surprised to learn I am able to drive on my own, and I know in the disability world it is no easy feat. But I also know that if I had been unable to drive, I would have found some other way to take on an active role in my world. After all, my life has always been one of adaptation, but it has never been one of defeat.

 

Dating With a Disability

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Even though I eventually got lucky with my boyfriend (who I’ve now been with for 3 years), the dating scene was intimidating for me through all of my teen years and throughout college.

I used to consistently doubt that I’d even ever find someone to be with because I thought, “who’s going to love me that way with my physical disability?”But the point I’m trying to make is this: that thought wouldn’t have entered my mind so strongly were it not for societal perceptions of disability. People don’t think about disability and intimacy in the same sentence. That may be harsh, but it’s true. I know this because it’s been my reality.

I remember when I was a teenager and I started liking boys. I went through the typical phases of having crushes, but with an added hiccup. I constantly wondered whether the boys who liked me actually liked me or if they felt sorry for me due to my disability. Most of the guys I ended up liking in those early years were the boys who were consistently nice to me, and because I was so used to being indirectly bullied through school, I gravitated to the boys who treated me with kindness and friendship that felt genuine and real. However, even with those boys, the crush was only one sided, and I was “friend-zoned.” I liked them in the “I want you to be my boyfriend” sense, but they just wanted to be friends, and that was heartbreaking for me at the time. It took me years to realize that those friendships were not only real, they were the kind to stand the test of time and still be strong throughout the seasons of life.

I should also add that up until my junior year of high school, I attended private school, and at my private school, I was the only student with a disability. Being surrounded by friends who had no problem getting boyfriends was consistently frustrating. I watched my friends with their boyfriends, knowing they didn’t have the added challenge of wondering if someone would ever take them on a real date as opposed to a “pity date.”

It wasn’t until I was in college that I started feeling more comfortable with guys. Yes, I still had a lot to work through, but in the weird (and wonderfully hippie) city of Asheville, I had finally found a place where I belonged. Throughout my sophomore and junior years of college, I still had some experiences with guys that weren’t ideal and didn’t last, but I was learning. Once, I started talking to a guy who worked at a nearby bakery. When one of the first texts he sent me was, “Are you even capable of having sex?” I blocked his number and never talked to him again. In another instance, I had a few dates with a guy who was incredibly outdoorsy but also incredibly full of himself. While he was initially respectful of my disability, he later wanted to be intimate before I was ready. When he would not respect my decision to wait until I felt comfortable, his inner jerk surfaced, and he said “But no one’s ever said no to me before.” My response, “Looks like I just did.” I kicked him out of my apartment and my life.

I should note that even these early experiences taught me a lot about dating and relationships, and especially dating with a disability, and they helped prepare me for when I would meet the right guy. My friends and family will tell you that I spent years wanting nothing more than a relationship. I used to get so discouraged when they’d say, “It’ll happen when you least expect it.” Turns out they were right.

Sometimes it blows my mind that the first guy I entered into an actual relationship with ended up being the one that stuck. But in other ways, it made total sense. We met in an unconventional way, but looking back on it now, I know that we would never have crossed paths had we not met in that way. By the time we met in my senior year of college, I knew what I was looking for in a guy: someone who treated me with kindness, had a good sense of humor, and wasn’t at all repelled by the fact that I had a disability. When I first met my now-boyfriend, he was all those things and more, and within a few weeks, we were completely smitten with each other.

However, I was still unsure of a lot. I was unsure whether this was a guy that could see my disability, but also see that it was only a piece of me. I didn’t know whether he would comfortable with the fact that I have certain limitations that are always present. But more than anything, I knew I didn’t want to screw this up. For once, I didn’t want my disability to prevent me from experiencing something I really, truly wanted.

I remember the first time I caught my boyfriend staring at me. We were in the kitchen of my apartment, and I was washing dishes. I glanced over, and he was staring right at me. Confused, I responded with “what?” See, up until this moment, I had been stared at my entire life because of my disability, and I couldn’t even fathom that someone staring at me could be a positive thing. When he responded with, “I’m just looking at you,” I broke down crying. I broke down because I was falling for him, and I broke down because for the first time, I truly felt seen. For once, I wasn’t being stared at because of my differences. And for the first time in my life, a guy wasn’t just seeing my CP, but every single part of me…and it was wonderful and terrifying all at the same time. But it was love. It was our story. And it was only the beginning.

My Simon Mall Experience As Someone With a Disability

/ TrailblazingWithCP / 7 Comments

About a month ago, my boyfriend and I went to Haywood Mall in Greenville, South Carolina, because it was the closest mall to us with an Apple Store. As someone with a disability, going to the mall is a pretty huge ordeal because it’s difficult for me to walk long distances before I either become too tired or am in so much pain that I can hardly move. Two years ago, I bought a mobility scooter to make things like a trip to the mall way less daunting, and it has seriously made a world of difference in terms of my independence. However, on this particular day, my scooter wasn’t properly charged, thus making it useless for our weekend mall excursion. Therefore, onto the mall we went, knowing that upon arrival we’d need to locate a wheelchair since the particular mall we were going to was the largest mall in the state (of course).

Upon arrival, I pulled up a map of the mall, which explained that the Customer Service desk where the wheelchairs were located could be found inside of Macy’s. So, off we went into Macy’s, but upon finding the customer service desk, we were informed that wheelchairs were no longer located in Macy’s and could now be found outside of Belk’s. With a sigh of frustration, off we went, silently hoping that Belk’s was not on the entire opposite end of the mall. As someone with a physical disability….long distances (especially when walking) are not my friend whatsoever.

With as much stamina as I could muster, we made it to Belk’s (which thankfully was not on the other side of the mall). However, as we surveyed the area, we realized….no wheelchairs here either. What the crap! By this point, my boyfriend was becoming really frustrated, and I wanted to cry. I knew I needed to rest, my back was killing me, and I needed a damn wheelchair. Out of the corner of my eye, I spotted a mall security officer and kindly asked him if he knew where I could find a wheelchair. He then took us to a long, obscure hallway right next to the entrance to Belk’s (which we definitely would not have seen had he not pointed it out). WHY, in public places, is accessibility-related information STILL pushed back into a freaking corner? The fact that we wouldn’t have found this office had the officer not pointed us directly to it proves how far we as a society still need to come in accepting and normalizing disability.

The security officer informed us he wanted to check the management office to see if there were any wheelchairs there. He looked. There weren’t. He radioed some of his other officer buddies to see if they knew where an available wheelchair was. They didn’t. The officer then proceeded to go look for one, informing my boyfriend and I that we could wait in the management office until he returned. We waited 10 minutes…20 minutes…30 minutes…an hour. By this point, I was pissed. I pulled up another mall map and discovered that the Apple Store wasn’t far from us, so we proceeded to walk. Was it an easy walk? No. Was I already in an insane amount of pain? Yes. But honestly, I was tired of waiting to be accommodated.

This experience got me thinking about a few different things:

  1. Why are there not more wheelchairs available in a huge place like a mall? Heck, there are more scooters available at my local Target and Ingles grocery store than at a shopping mall! Where is the logic in that?
  2. Why aren’t wheelchairs simply placed at every mall entrance? I know this could be somewhat frustrating and might mean investing in a pretty huge amount of wheelchairs, but it would be so much easier for customers. I’ve been to malls before that have provided strollers at each entrance and you just put it a quarter for use and get your quarter back when you’re done using it. Why can’t we have the same thing for wheelchairs? If malls are going to be supportive of families with small children, why not extend the same courtesy to individuals with disabilities?

My experience at Haywood Mall reminded me that I live in a world not build with me in mind. Disabled people are a minority, and while the Americans with Disabilities Act of 1990 was a big step in the right direction, there is still so much to be done. While I am used to living in a world that I’ve constantly had to adapt to, it doesn’t mean it is any less frustrating. I’ve had the mindset all my life that if I want to do something, I’m going to figure out a way to do it that works for me, but that doesn’t mean that I’d shy away from receiving a helping hand every so often. The disability community has been knocked down time and time again over the years. It’s time we speak up…for ourselves, for the rights we deserve, and for future generations of the disability community.