Picture this – it’s 90 degrees. The sun is shining, and it’s equally humid. You’re starting to feel beads of sweat gather around your forehead, promising to spread to every part of your body. Hot leather is sticking to your legs, threatening to chaff. Rusty steel surrounds you and makes worrying creaking sounds as you are being thrust forward.
That was me, on May 10th, 2015. In downtown Atlanta, near Central Park — smack dab in the middle of the city. The reason? Shaky Knees Music Festival.
My dear friend had used her own money to purchase day tickets, drive 10 hours to pick me up, and take me to see one of our favorite artists – Ryan Adams. I know what you’re thinking: wow, you have an amazing friend. Yes, yes I do. I honestly don’t know how I would’ve survived the experience without her there by my side.
I’m a Georgia transplant. I was raised, mostly, in Mississippi, and only moved to the Peach State a couple years ago when I got married. I am not too familiar with Atlanta. Actually, I’m not too familiar with big cities in general (if you’ve ever been to Mississippi then you will understand). So I am willing to admit my naivety regarding navigating the “Big City.” I live northeast of it, and rarely venture down into the belly of the beast. Being disabled, it has always seemed to be more hassle than it is worth. And boy was I right.
The mental gymnastics that I performed in order to get to this picture of sweltering heat and being pushed in an old wheelchair was quite exhausting. Worrying thoughts swam around my head as my skinny friend pushed and heaved me along the rough sidewalk. How much longer can she push me? How much longer can I endure this? How much longer do we have to go? “I’m so sorry!” I repeated I don’t know how many times. “I had no idea it was going to be this hard! I’m sorry! I know I am heavy!” I chattered worriedly, to which she just laughed in reply. “Stop apologizing! It’s okay.” I didn’t fully believe her as I heard huffing and puffing behind me. We had only just gotten out of the parking garage and through the hotel lobby. Mere seconds outside and we quickly saw our fate before us; uneven sidewalk, huge gaping potholes, and places where the sidewalk abruptly ended. I clutched my phone with a death grip – it was my only sense of direction. I asked the first person who caught my glance, “excuse me sir, can you help us get to the Shaky Knees Music Festival?” Sure, he said. It’s pretty simple, he said. Then he gestured so fast I couldn’t keep up. Was that a right, right, and then a left? I asked for clarification. After he repeated himself, I was feeling more confident. Only two minutes later did that confidence become shaken as we approached another massive pothole. My friend tried several times in vain to push me through it. I could feel my shoulder joint rattling with each shove, and I hoped that the stabilizing brace would keep the joint in place. “I’ll just get out, it’s okay,” I assured her. I steadied myself and shakily raised myself out of the dilapidated wheelchair. After walking only a few steps I was glad to sink back into it’s sticky, leathery embrace. I kept telling myself that it won’t be long now, we will get there soon. Then we encounter another pothole. Then, another, and after that, the sidewalk ended. Cars sped pass us at alarmingly close length. Again I volunteered my legs. “I’ll walk past this part, it’ll be faster,” I convinced her.
I could feel time waning on at such a slow rate. How long had we been at this? I glanced at my phone, the maps program still up and still just as confusing as when I first launched it. It was 30 minutes later, and we still had 0.8 miles to go. I updated my friend on our progress, encouraging her, “Only 0.8 miles left! That’s not far at all!” I tried not to notice the sweat now pouring from her brow, as was mine. It was at that moment that I wished I was a millionaire, with a personal chauffeur and one of those really expensive, high-powered, motorized wheelchairs. How great would that be! As we crossed yet another busy intersection, I began to notice people camped on the side of road, with backpacks and personal items set up beside them. I peeled my eyes on the crumbling sidewalk ahead. After what seemed like forever, we finally started to see signs and indications that there was a music festival going on. I could hear a bass line off in the distance. I began to get excited, hoping that the most difficult part was over. Excitement quickly turned into confusion as we approached an intersection with these tall black barriers and security standing guard. I couldn’t help but think that we must have been quite amusing to watch; me yelling out my sentences so my friend could hear me over all of the noise, dictating directions that my iPhone was feebly giving me. “It says we’ve arrived!?” I shouted. “I don’t understand? I don’t see a sign saying where we enter?” I could finally hear a hint of frustration in my friend’s voice as she gathered her strength to turn me around, and push me up the massive incline back to the intersection. The only thing we could do was follow the music; and like moths to a flame try to weave our way towards the growing crowd.
I was pleasantly surprised by how nice the crowd was; after yet another pothole a group of men helped lift me forward. And when a fence rudely jutted itself out in my pathway, several people helped my poor friend navigate me around it. I was happy to finally see a white poster board stuck to a light pole that read “ENTRANCE”. We approached an open gate and two young women standing guard of it, with shirts that read “Shaky Knees Volunteer”. My friend and I both started speaking at once, desperate for information. “Where is ADA? Where can we enter?” Despite repeating questions, all we received in return was a point in a general direction. So onward we went, only to be stopped again by crumbling sidewalk. Another group of people kindly helped us, although it was so massive I had to eventually get out and walk. FINALLY, the entrance was visible. I could feel my friend gaining momentum as we made our way down a curvy sidewalk past a mysterious public building. I looked to my left and saw a row of empty handicapped parking enclosed within the gated-off area. Disgusted, I yelled out, “What!? I didn’t know these were here! Why couldn’t we park there!?” Frustrated but not defeated, I pushed it out of my mind and looked ahead anxiously. We approached the security gates and saw several tents past the gates, with booths and employees set up to check tickets. My friend triumphantly pushed me up to the security gate, we were both dripping with sweat and exhausted. I could feel sweat pooling underneath my thick, black shoulder brace. Suddenly I came to an abrupt halt as the wheelchair slammed up against the gate’s railing. They were placed so closely together that the width of my chair couldn’t pass. I looked around confoundedly, trying to make eye contact with an employee. The line ahead of us started moving at a quicker pace and streams of people came up behind us. We were holding up the line. I eventually decided to stand up, allowing my saint of a friend to lift the wheelchair completely off the ground and wedge it in between the railing. As I approached the employee taking tickets, my friend asked the employee if there was an easier way to wheel me into the festival, where the ADA was and how much further it would be. The answer we got was, “Um, well, yeah, technically you can’t bring a wheelchair in without someone in it.” We both gawked at the employee incredulously. Surely this employee could plainly see that my friend was having to lift up the chair and turn it on it’s side just to stand in line. Still, I gave him the benefit of the doubt. “I had to stand because my wheelchair would not fit through the entry gate.” I explained. He seemed agitated by my response, his face tightening in annoyance and exhaustion. “Um, if you don’t mind, why do you even need the chair?” It took me a few seconds to realize what he was really asking. I stood dumbfounded, shifting my weight and exaggerating my slumped shoulder that was being held up only by a brace and sling. I don’t remember the exact words I said, as my cheeks flushed and I felt hotter than I had all day. But I believe my reply was something along the lines of, “My shoulder is chronically dislocating and I have had multiple brain and spine surgeries from serious conditions.” I could hear my voice tense up, growing higher and higher in pitch as I hurried out the last few words. He quickly reacted, rolling his eyes and raising his hands up defensively. “Ok, ok! I was just asking.” As if to say, “relax, disabled person whom I have just interrogated, no big deal!” He seemed to begrudgingly let us pass, and as we emerged from the tent, I was finally able to sit back down now that all four wheels of my chair could touch the ground. Breathing heavy, exhaustion overwhelmed me.
I realized they didn’t answer our questions of where to go, where ADA was and how much farther we had to walk. Determined to make the final stretch, we started walking towards the music and look for any other staff employees. Soon the hilly pavement ended and the direction we needed to go was towards the sidewalk and a grassy area. It was very much uphill, and the only sidewalk entrance was three shoddy planks of plywood crudely constructed and somewhat askew to the sidewalk. With as much momentum as my friend could muster, she attempted to shove me up the “ramp.” After failing several times, some nice fellow festival goers helped heave me up on the pavement. Then we adventured uphill, trying to stay within the narrow, dirt covered walkway. By this time it had been over an hour and we both needed to use the facilities. I have never been so happy to see a port-a-potty in my life. They were arranged together forming rows within a basketball court, which was surrounded by a tall black fence with only one visible entrance. The cement slab was much taller than the tiny walkway, making for a major obstacle. I was turned around and pushed towards the giant step up, only to slam into it repeatedly. There was no way my chair was going to clear that. I had really hoped there would be a ramp or something that would enable me to access the bathroom without leaving my chair. Sighing, I felt deja vu as I repeated, “I’ll have to stand up.” Thankfully, it wasn’t that far to walk before I found an available port-a-potty.
It was at this time that I really started to question if I had made a huge mistake. I mean, we had just gotten into the park and I was already trembling from pain. As if she read my mind, my friend forced a smile and encouraged me onward. She was determined to find someone that would listen to us. I could tell she was as frustrated as I was, but I was so grateful for her advocacy and positivity. After a few more literal bumps in the road, I finally spotted the glorious “ADA ACCESS” sign. I swear I heard a chorus of angels singing. There were also several staff members standing around in bright colored shirts. More good news! I felt victorious, our luck was finally changing. The ADA area was well designed, had a proper ramp with plenty of room and a good view. Also, there was shade, which is super important. We relaxed for a minutes after getting situated, and then my friend turned and examined me. My fatigue must’ve been fairly visible because she quickly decided that we needed water. I craned my neck as far as I could to see if the food and drink vendors were nearby. To my dismay I realized that in order to reach that area from where I was, I would have to navigate in the grass and up and down several hills. Also, if I wanted festival merchandise I would have to do the same thing. I quickly saw that was out of the question, so my friend went by herself. I took a deep breath and relaxed, trying to slow my breathing, lower my heart rate and control the muscle tremors. After a while she returned with good news. After talking to three different staff members, she was finally directed to a manager of some sort who was very understanding. He directed her to a parking spot near the first aid tent which was across from the ADA access. He also gave her his business card and seemed very interested in our experience, asking her to email him and follow up with our story. What we didn’t know at the time was that he would later reply to her lengthy email with a few sentences that in essence brushed us off completely. However at the time we felt a renewed sense of hope, and my friend set out to retrieve the car while I settled in to actually enjoy the show.
It was incredible, and despite our earlier trials and troubles, I am so glad that I went. Not only did Ryan Adams put on an amazing show, but I was so encouraged by the support and advocacy that my dear friend displayed for my disabilities. I only wish that something would be learned by others from my experience, whether it be fellow disabled people who are seeking information on the Shaky Knees venue, or downtown Atlanta/Central Park sidewalks; or from those that are not familiar with the difficulties we face, who do not on a daily basis struggle with the obstacles and judgment that we encounter. I am grateful to WheelchairTravel.org for allowing me to share my story and spread awareness. I am excited for what is to come in the future!
Rachael Cawthon is 21 and a wife, Christian, dog lover, writer, cook and professional patient. She has more than 15 chronic illnesses, but they do not have her. Rachael’s most debilitating diagnoses include Ehlers Danlos Syndrome, Syringomyelia, Psuedotumor Cerebri, Chairi Malformation and Postural Orthostatic Tachychardia Syndrome. She is one of millions of Americans with invisible disabilities that cannot always be seen with the naked eye.