Why My Disability is Not Your Feel Good Story

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

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

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

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.

Jobs, Money, My Future…Oh My!

To say it has been a long time since I’ve blogged is an understatement. Between being in my final semester of graduate school (which starts back on Monday), stressing about jobs, money, and my future, and fitting in time with my boyfriend and my cat, there hasn’t been time for much else. However, as usual, this blog/writing has been in the back of my mind. So, here I am.

When I first began my MSW (Master’s in Social Work) program in August of 2014, I thought I knew what I was in for. I thought I knew the population I wanted to work with. I thought I had the hard parts figured out already. However, I’m beginning to realize that starting my MSW program was just the start. As it turns out, the hard decisions have yet to be made. People ask what population do you want to work with and what kind of work do you gravitate towards within social work…and my expression is completely blank. Because you know what? I don’t know. I don’t know, and that’s scaring me.

As part of my MSW program, each year students are required to complete an internship/field placement for each of the two years of the program. During my first year, I began by interning with an organization that works with individuals with disabilities. However, after a big personality clash between my supervisor and I, I made a quick switch after a few weeks. I then interned for the rest of the year at an adult day health center for individuals with dementia. While I enjoyed that, the pace was somewhat slow for my taste and I didn’t really like working with the elderly population, so I knew that during my second year, I wanted to do something completely different. Therefore, this year, my field placement has been in the case management department of a local hospital. While I enjoyed it at first and I’m able to do the work, I’ve recently realized that it’s not where I want to work following graduation.

Here’s what I do know as of now: I’m interested in mental health (but don’t have any experience with it), I’m interested in disabilities (but know that I want to directly work with clients as opposed to doing a lot of behind the scenes work) and I want to do clinical work. I also know that I love working with kids, but don’t necessarily know if I’d like working with them in a mental health capacity.

And here’s where all the frustration comes in. While I realize that it is just as good to know where you don’t want to work as well as where you do, I thought I’d have a better idea at this point. I thought I’d have it figured out, and I don’t. I thought graduate school would help me figure out what the hell I want to do with my life, but it hasn’t. Other than knowing I want to be a social worker, obviously. Which is good, I guess. But it doesn’t feel like enough.

I’m hoping that I have a better idea of what direction I want to move in following graduation, but what if don’t? What if I’m just as clueless then as I am now? The hard part is that I know I’ll need to get a job following graduation in order to pay for rent, bills, and living. At the same time, I’m just as scared to take a job working with a population I don’t have experience working with. To be honest, that terrifies me….to get in a job and realize the learning curve is way more than I bargained for. Therefore, the obvious result would be to take a job in an area of social work that I already have worked in (like in gerentology or the hospital)…except for the fact that I know I don’t enjoy working with those populations/in those settings. Agh! I’m frustrated, to say the least.

Thankfully, I’ve been able to talk to multiple people about all this. And all of them have told me that it’ll all work out and that I’ll find a job. However, what many of them have also said that it may not be a job I really like right out of graduate school. And I guess that’s what’s so hard. The uncertainty. The not knowing where I’ll be working. And the likelihood that even once I find a job, I might not even like it. How crappy is that? I thought the whole point of going to graduate school was so that I could work in a field I love and enjoy going to work every day?

And when I get in this kind of funk, the ever looming question emerges: Am I cut out for this work…Do I really even want to be a social worker? At this point, I know one thing: I know I want to help people. I want to help people more than anything in the world. And hopefully, when the time comes and I’m sweating my way through all sorts of job interviews, that will be enough.

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