Disability Rights are Human Rights

About a month ago, I went to Cracker Barrel for lunch. I parked in a handicapped spot as usual, put up my handicapped placard, got my walker out, and went to enjoy lunch. When I was done with lunch, I came outside only to realize a huge SUV was parked in the access ramp space beside my car and was close enough to my car that my walker couldn’t get between my car and the SUV (and there was no access ramp on the other side of my car). Due to my Cerebral Palsy, lifting my walker above my head to get it out from between the cars was not an option. I also couldn’t collapse my walker and turn it sideways because I needed it for stability. I was, quite literally, stuck. Stuck in a situation that shouldn’t have even happened in the first place. And yet, I knew something similar would happen again, and I was right.

About a week after the incident at Cracker Barrel, my fiancé and I went out to dinner at Applebee’s for date night. We parked in a handicapped spot and he provided me with his arm for stability to help me get inside. Going out to dinner was just what we needed. It had been a while since we had a date night, and we wanted to further treat ourselves after a fun day of shopping. It was a great ending to an already perfect day. We came out of Applebee’s, hand in hand, and when I looked at our car, my smile instantly faded. Beside our car, another car was parked in the access lane, blocking the access ramp, preventing me from getting to the car, much less get inside it. The other car was parked so close to ours that opening the passenger door wouldn’t even be feasible. Infuriated, my fiancé marched inside and spoke to the hostess standing right inside the front door. He explained the issue, pointing outside at the two cars. At that point, a manager was called over, and the story was repeated.

A few minutes later, my fiancé came back outside, followed by a woman in her 60s who seemed extra annoyed to have been interrupted during her dinner. She looked at me, apologized, and simply stated, “I was helping my friend inside. She is in a wheelchair.” That meant nothing to me, not because I don’t support every member of the disability community, but because the woman was parked in an access lane and there was a perfectly free handicapped spot next to her that was not being used, not to mention the fact that where she had parked would have prevented her friend from using the ramp to get up on the sidewalk because the woman’s entire car was blocking access to the ramp. I was so mad, I couldn’t even respond.

And please, hear me out. I understand she was helping her friend. I totally get it. However, she could have helped her friend out of the car, gotten her settled into her wheelchair, and then moved her car to the available handicapped space next to her, or any other free parking space. Instead, she left her car parked illegally in an access lane for the entirety of her dinner outing, preventing another disabled person from using the access lane to safely and comfortably get inside the car.

My point is this: Please don’t park in access lanes. They are there for a reason! And there’s a reason there are blue cross marks through the space…because they are NOT parking spaces! That extended space is there for people who require more space entering or exiting a vehicle because not everyone has the luxury to move with ease. Please consider that the next time you go to park in a handicapped space (if you’re parking there without a handicapped placard or have parked in the access lane). You may be taking away someone else’s ability to enter a restaurant/building/business with ease.

Disability rights are human rights.

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The Reality of PTSD as a Result of My Disability

*This post was originally posted on my first blog. I felt like it was applicable to the fear and anxiety I still have related to my past. I’m working through it of course, but change doesn’t happen overnight. It’s just one day at a time.

For as long as I can remember, I’ve always been a nervous person. Along with those nerves, I was also very scared, especially as a kid. Rather than using the word “fears,” I was simply told by my parents and my doctors that I had a “vivid imagination.”

Because of this vivid imagination, I remember one specific time when I was 12 and my parents waited a while before they told me about a specific scheduled surgery. I understand now that they didn’t want to alert me to it too far in advance because they knew I’d essentially be a nervous wreck right up until I had to go in for surgery. Though I can understand this now and I know it was a protective measure, I didn’t see it that way when it happened. I remember the night my parents sat me down to tell me about a surgery that would be occurring in about a month. I couldn’t exactly comprehend at first that my parents had waited to tell me, but once I did I immediately started to worry. Not long after that moment, the dreams I would always have leading up to a big operation started. The most common, of course, was the dream in which I woke up during surgery.

Due to my “vivid imagination,” my dreams were exceptionally vivid. In my dream, I was lying on the operating table. My eyes were open, and I was seeing everything. The doctors had the femur of my left leg in their hands, and they were twisting it to the left in order to straighten it out. Though I couldn’t feel any pain in the dream, I could imagine it, which was almost as bad. I looked at the doctor’s gloves, which were covered in blood, my blood. In a room as white as the operating room, the red seemed out of place. And yet, there it was. On the doctor’s hands was the blood that ran through my very veins. As I watched the doctors attempt to “fix” what was “not normal,” I tried to scream out. My mouth opened to make any kind of sound, but nothing happened. I tried to move. I focused so hard on trying to simply raise my right hand off the table, but it was too heavy. The doctors had to know I was awake. If they knew, they’d stop. If they knew, it would all be over. I just needed to do something to get their attention, but they were so focused on my legs. They didn’t even glance up towards my face, not even once, to see the fear and the anguish that was mirrored in my eyes. I wanted nothing more than to get as far away from that room as possible. I wanted to get away from the dead quiet that enveloped me like a blanket that was too heavy, practically suffocating me. The moment I closed my eyes to escape the horror I was seeing, I woke up.

When I woke up from this dream, I felt like I could barely breathe. Without even giving it a second thought, I yanked back the covers to look at my legs. I touched them to make sure they were still intact, still closed up tight. I looked on my legs, my hands, and my sheets for the blood. The blood that had been so incredibly red, so out of place in that white room. With my sweaty palms resting on my knees, my emotions took over. I cried out, knowing that tears couldn’t do this type of fear justice. I rocked back and forth, holding the stuffed teddy bear that was tucked into the bed beside me, and knowing as I started to shake that the tears were coming. When my body finally allowed me to cry, I curled up on my side, hugging the stuffed teddy bear to my chest like a shield, and let my tears speak for me. After the immediate emotion passed and I was curled up into the tightest ball I could form, I began to hum. I hummed the lullaby that my dad so often sung to me when he’d rock me in his mother’s rocking chair on the nights I couldn’t sleep. Eventually, sleep tugged at me again, and I opened my eyes for a pleading moment as I looked into the darkness, knowing the dream was waiting for me.

The Mobility Chronicles: CP Edition.

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.

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.