The past three weekends have been full of public events for Irena and I. One of the ongoing stressors for people with disabilities is attending public events. Especially when they are in unfamiliar territory or uncontrolled conditions. For some, the level of fear can become paralyzing, creating a border of frustration and isolation between themselves, their loved ones, and their community. For others, it creates a challenge, a deterrent that we must push through to fully engage in the society that we are meant to be a part of. For many, the concept of facing that fear doesn't even get to be entertained due to a lack of technology, support, and access.
When I say "challenge", please understand that often it is not just a matter of facing physical or emotional obstacles; that "deterrent" frequently involves accepting real pain...both physical and emotional...as an assured tax for ensuring that you will be present in your friend's and family's memories of such events. Pain is a toll for people with disabilities who choose to participate in public events that are built around their interests and hobbies. Pain is the price that people with disabilities pay to enjoy the major life activity of attending public events. This price is inflated because our social model, and the events that spring from it are still not designed to be accessible for people with disabilities. Well intentioned accommodations and legislation aside, we have barely begun to scratch the surface of embracing a truly accessible social model.
Over the last two years, with the rise and resurgence of Covid19, the entire world has had a tiny glimpse of what it's like to live with a disability and confront the very real potential risks of going out into the world, much less a public event where diverse crowds will be gathering. It's still here, we still have to incorporate protecting ourselves and others from the virus in everything we do, but for a person with a disability, it's just one more consideration on top of everything else we already have to account for. In addition to making the decision to get vaccinated and remembering to wear a mask when I'm in a public enclosed environment, I also have to think about whether I'm going to want to wear my prosthetics to better access the environment, will I need my wheelchair to deal with distances, if I'm not using my prosthetics do I need to wear something to protect the grafted skin on my right residual leg from the sun and other elements, will there be accessible parking, accessible restrooms, etc?
I know, no matter what, if I wear my prosthetics for more than a few hours they will start to become "uncomfortable"; which is actually a level of discomfort above the normal constant globally tight fitting sockets. If I stand in place too long, it will hurt my back. If I sit too long, the top of the sockets on my prosthetics will begin to irritate the surrounding skin...this is especially an issue when in the car for long periods of time. If I've gained more than ten pounds from what I weighed when the sockets were designed 7 years ago, my residual legs will throb until the pressure and sweat has caused my legs to reduce in volume; if I've lost more than ten pounds then they won't fit at all and I will not be able to control them properly. If I'm using my wheelchair, eventually the constant sitting will begin to wear on my lower back and the repetitive motion of pushing and maneuvering the chair will impact my arms, neck, and shoulders...my tail bone will become sore due to a break from a fall last year. These are just examples, based on my experience as an amputee, but I assure you every person with a disability faces some form of physical or emotional pain tax every time they decide to engage in the outside world.
Please, don't get me wrong, we learn how to manage all of this as much as possible, and if we can orchestrate the perfect confluence of weight control, health management, diet, perfectly fit and adjusted assistive technology, and all of the variable environmental factors like weather, traffic, etc. to flow together the way we need it to, that pain can be minimized and we can function at the top of our games, but most of the time we're lucky if we can get half of that to go our way. The fact is that we live our lives in discomfort, no matter how much we may have accommodated our disabilities in our home environment, so when we go out into the world it becomes a question of how much more discomfort that gradually will intensify to pain are we willing to experience?
Part of making that decision inevitably becomes about research, prior personal experience, and ultimately how important the event is to you and your loved ones. Three weekends ago Irena and I decided that we wanted to go to a Renaissance Fair being held about an hour and a half away, at Clayshire Castle in Clay County Indiana. (Yes, there is a medieval castle in Indiana...they even have costumes for the guests...how have we never stayed there?). Clayshire Castle is actually a bed & breakfast in a beautiful rustic setting surrounded by woodland and rolling hills. While I have not stayed there, the first room advertised on their website is described as wheelchair accessible, which I find intriguing. Renaissance fairs are something that Irena and I love to experience, so regardless of how challenging (eventually painful) this would be, I was in!
Irena and I became aware of Clayshires Castle's ren-fair about a week ahead of time. This also presented us with an opportunity to take our friend Sonja, whose husband Scott recently passed from Covid-19, out into the world in a safe manner for some diversionary healing and positive energy. As usual, when it comes to information about accessibility at the event there was very little mentioned beyond a statement about the event being accessible for all. This is always good to see, but often a little dubious depending on what "accessible for all" means to the event planners. Irena and I had actually considered Clayshire Castle as a location for our wedding almost 6 years ago and, though we had not visited it, I remembered that the website had said that parts of the castle and grounds were accessible. The online info on the ren-fair specifically said that tours of the castle ran one direction and that you would need to be able to climb stairs to complete the tour...which tells me that someone is thinking about access and communicating in advance that some things are not accessible, this is actually very helpful...it's never been my expectation for everything to be accessible, just to the best extent possible, and it's good to know when and where it's not before you find yourself in the middle of it. Unfortunately I couldn't find anything about parking or any other accommodations for people with disabilities.
I should have taken the time to call, but life being what it was, I didn't get around to it and I felt pretty confident that if they were operating as a bed & breakfast with a wheelchair accessible room, and advertising that the fair was accessible for all, then what ever obstacles I may encounter, I would be able to figure it out...which might mean deciding not to attempt to enjoy some aspect of the fair, but that comes with the territory. I wore a lightweight shirt, a casual kilt, and my prosthetics. Irena wore a beautiful dress that is a little large on her, but creates a beautiful flowing effect in the wind. We decided to take my folding frame wheelchair too, predicting there would be a lot of distance and uneven ground. We picked up Sonja on the way and enjoyed the adventure of a drive into Indiana's forested countryside on a strikingly beautiful day.
Our drive took us onto stretches of forested road that barely qualify as "road", across bridges that appeared to be built out of random pieces of metal soldered together, and ultimately into a field full of cars bordering a narrow gravel road. The road went back into the woods and appeared to immediately go up hill at a sharp angle; there was a manned barricade blocking the road, it's keeper guiding people into the field to park. There were several attendants guiding the traffic in the "lot", and school busses regularly coming out of the woods to pick up the fairgoers.
We asked the first person we could where to park for wheelchair accessible parking. He didn't know, but directed us back towards the front. We flashed the ADA parking tag at the next person we saw and he suggested we drive back towards the entrance and park as close to where the busses were picking people up as we could. Before I got out of our Santa Fe, Irena checked with the man at the barricade and he said that there was ADA parking up near the castle grounds, but that the busses would actually get us closer to the ren-fair than the ADA parking would. He then offered Irena two free passes to the fair for the inconvenience.
So, we walked to the bus stop, the ground being so uneven here that it was actually easier for me to walk than to try to push the wheelchair with me in it. After waiting until most people had gotten aboard, I utilized the robotic stair ascent functions on my Power Knees to get on the bus. (I'm told it's very impressive to watch, and even more entertaining with the kilt)! Irena and Sonja waited with the folded wheelchair until everyone else was on the bus, then brought the wheelchair on with them. The bus driver and everyone aboard was very understanding and accommodating, though the bus driver was also confused about why the parking guy hadn't told us to stay in the car and follow a bus to the parking area. (The road from the field to the castle grounds is so narrow that vehicles can only go one direction at a time).
So, we walked to the bus stop, the ground being so uneven here that it was actually easier for me to walk than to try to push the wheelchair with me in it. After waiting until most people had gotten aboard, I utilized the robotic stair ascent functions on my Power Knees to get on the bus. (I'm told it's very impressive to watch, and even more entertaining with the kilt)! Irena and Sonja waited with the folded wheelchair until everyone else was on the bus, then brought the wheelchair on with them. The bus driver and everyone aboard was very understanding and accommodating, though the bus driver was also confused about why the parking guy hadn't told us to stay in the car and follow a bus to the parking area. (The road from the field to the castle grounds is so narrow that vehicles can only go one direction at a time).
Sure enough, when we arrived at the top of the road, the bus stop was directly across from the ADA parking area, right next to the entrance to the castle grounds. An entire parking lot designated for people with disabilities, and there was only one vehicle parked in it. I wondered how many people with disabilities had struggled to get on and off the bus because the guys at the main parking area either weren't aware, or hadn't been properly trained.
After everyone else had gotten off the bus and Irena and Sonja had managed to get the wheelchair off and set up, I used the stair descent functions of my robotic knees and they worked really well until the last step, where the doors and the lack of hand holds created an awkward body position that the AI in my knees interpreted as me falling, so they wouldn't bend to let me down. Due to the height and uneven terrain...loose gravel...there wasn't a way for me to safely use my crutches to step down to the ground. Ultimately I had to trick my knees into allowing me to carefully fall down the last step. It was physically taxing and emotionally draining to figure this out in front of an audience; all wanting to help but equally afraid to get in the way of the cyborg in a kilt at the renaissance festival struggling to stumble off a school bus. Once on the ground and in the chair I took a moment to rest, knowing that the struggle had reduced the amount of time I had left to enjoy the festivities before my discomfort progressed to pain.
The gravel road that led a short distance through the woods and then on to the castle grounds was a challenge for the chair, with basic narrow wheelchair tires and small front castors, but relatively safe for me to walk so long as I paid attention to the stable placement of my crutches. (A bit more focus than I typically need, but nothing too taxing). Once on the castle grounds, we could see that the fair was spread out across the grounds, which consisted of a well manicured, though quite hilly, lawn. They even had a small hedge maze and, though we did not get to it, even the jousting arena looked accessible. Most of the vendor stalls had enough room for me to approach, and some even had room for me to browse inside their tents. There were some places where I needed to walk, and some places where I needed the chair, and some hills that were too steep for either to be really safe, but for the most part the entire fair was as accessible as it could be.
Overall I was very impressed, though I have to be honest that my assessment does not include the accessible bathroom facilities, as I avoid those as much as possible whenever I'm out in the world...especially if it involves an "accessible" port-o-potty...whatever that is, I don't want to find out, but I'm glad they exist. At the end of the day, after we waved goodbye to the queen and one of her masked handmaidens as we left the castle grounds, Irena and Sonja rode the bus to the car and then followed another bus back to pick me up at the ADA lot, which spared me a tremendous amount of additional pain, as we were beyond that balance point. What made it possible though, was a combination of my equipment and experience adapting, Irena and Sonja's willingness to help me manage that process, and the fact that it was evident that the planners of the event at least wanted people with disabilities to feel welcome even if they didn't get it perfect in regards to awareness and training.
The following weekend was a different situation all together. My uncle, Maestro Michael Palmer, Director of Orchestral Studies at Georgia State, Founder of the Bellingham Music Festival, Creator of the American Sinfonietta, and more musical achievements and accolades than I can list here, was Guest Conducting the University Orchestra at the Indiana University Jacobs School of Music...his alma-mater. My uncle spends most of his time in either Atlanta or East Hampton, New York, so the opportunity to spend any time with him is always a gift, but to see him perform is a rare treasure! He conducted the young musicians beautifully, drawing emotion and imagery from their combined musical talents to bring the compositions of Gresham, Mahler, and Brahms to life!
For this excursion I opted not to use the wheelchair, though we did bring it along, just in case. My reason for this circles around the fact that I have found wheelchairs are rarely comfortable in theatres, for both physical and emotional reasons. They are restrictive. With my prosthetics on I can usually get to almost any seat...carefully...but if I am in my wheelchair I typically am constrained to the wings or the back of the house, never able to get to the optimal area for both viewing and auditory experiences. I also always feel like I'm sticking out and either blocking someone's view or creating a fire hazard.
Arriving early, which is very unusual for us, Irena and I found the accessible parking spots...2 of them...on the side, downhill, but just around a ramped corner from the front of the building. I was slightly confused by the signage for the accessible parking spots, as they stated "Valid IU Disabled Permit Required". Taking the chance that IU's police would not give a vehicle with an ADA parking tag a ticket for parking there without an IU specific permit, we parked the car. Unfortunately the actual accessible entrance, which was the main entrance for the building, was located at the opposite end of the building from the accessible parking spots, requiring me to walk a considerable distance before I could enter the building and embrace my cousin David and his wife Michelle, who had come from Texas for his dad's performance!
Once inside, the very modern and recently updated theatre was very accessible for me, though I still needed to be cautious when walking to and from my seat near the middle of the row. I had made the right call leaving the wheelchair in the car. Though this was the row that was "accessible", they had only built a leveling platform at the end of the row that had space for a couple of wheelchairs...I assume there was an identical platform at the opposite end, but they had not widened the space between the seats and the next row forward, or allowed any space in the row for wheelchairs or walkers, etc. to be stored during the concert. I watched one woman struggle to fold up her walker after she was seated at the first seat in the row. Her walker then became an obstacle for any of us if we needed to get out. I then watched another woman approach with a walker who took the first seat in the row behind the first woman. She left her walker parked directly behind the folded walker belonging to the previous woman, adding a second layer of durable medical equipment for us to deal with if we needed to leave in a hurry...of course, in that situation I would become an obstacle too if I'm to safely navigate the row.
The after party was at a college bar/restaurant on Kirkwood with a large room at the back on the main floor. Aside from some uneven flooring in the building that clearly dated back to before my parents were students at IU, I have no complaints. I was able to move through the restaurant to the back room and find a seat at a table safely and unobstructed. Their tile floor, often slippery with decades of grease build up in most college bars, was clean and safe for me to walk on with my crutches.
The glaring difference between the two situations was that the theatre and the grounds including the parking areas around it had obviously been designed and updated after the American's With Disabilities Act became law, but their accessibility measures lacked the forethought and spirit that comes from including a person with a disability and our priorities in the design and construction of the facility. The restaurant, on the other hand, was in a building that was much older. The operation was doing the best they could with a building that wasn't designed to comply with any accessibility codes, yet there were no steps at it's entrance, the arrangement of the tables and booths...the internal design that maybe might have been updated since 1990...and their attention to cleanliness and safety made it a much more comfortable environment for this amputee. (Oh, and as you can see, I wore a kilt again; this is also directly about comfort, but it sets a striking style as well).
The weekend after that, I was looking forward to a quiet weekend at home. I was really looking forward to a quiet weekend at home. Irena was going with her sister to camp at the Feast of the Hunter's Moon. A living history re-enactment of the annual gathering of the French and Native American's that took place at Fort Ouiatenon, on the banks of the Wabash river near West Lafayette, Indiana. To drive the point home, my wife and her twin sister were camping in French & Indian War era military tents for the entire weekend! They grew up doing living history re-enactments with their dad, whom we lost to Covid last year. Though this was the first Feast to be held since Scotty transitioned to his next phase of existence (2020 was canceled), Irena and Gavin and several others said his spiritual presence was keenly felt. It was important for them to not only attend the events, but to immerse themselves in the experience as they did in their youth. I, on the other hand, was happy to stay home and enjoy some downtime, this was one event that I could decide to be absent from, when it came to their memories, and we were all ok with that.
On Saturday, I received a text from Irena saying that Feast would be a great place for me to test out the new off-road wheels that our local Center for Independent Living, accessABILITY, recently purchased for me. I had picked up the wheels from accessABILITY earlier in the week, but other than unboxing them, I had not had an opportunity to figure out how to add the whole off-road package to my folding wheelchair frame yet...it's not as simple as swapping the wheels. So, based on her text, it appeared that my wife wanted me to come up to Feast for the last day of the event on Sunday.
Due to a random string of unrelated events, I didn't get around to working on the wheels during the day on Saturday. I had decided that I was really too tired to deal with what it would take to attend Feast the next day, but there's this funny thing that happens to me whenever my beloved isn't home for the night; I struggle to actually get in bed to sleep. Shortly after midnight I thought to myself, "Self, your wife wants you to be in her memories of this event, it won't take long for you to set up the wheels, you just need to sit down and work on them." So, I set about bringing the folding frame in from the car, where it resides.
Once the frame was in the room I unwrapped the new wheels, installed the axle pins, and added them to the frame. Next came the unboxing, assembly, and installation of the new front wheel that would lift the front castors which catch every bump and crevice, off the ground. Counter to my gender's stereotype, I took the time to read the instructions which were not very detailed. Some of this was going to be trial and error. This new front wheel component was actually intended for a rigid frame chair, which I use primarily in the house, so I also needed to unbox and assemble an adaptor piece to attach it to the folding frame chair...the same chair that I used at the renaissance fair two weekends earlier. As a Purdue student, when I walked on my natural birth legs, I had spent time out at Fort Ouiatenon and attended more than one Feast over the years. This was terrain that I knew and it was going to be much more challenging than what we faced at Clayshire Castle.
As is my way, I lost complete track of time. What I thought would only take maybe a half hour, and what only felt like a solid forty-five minute period, was in reality much longer. At 3am I was outside in the front yard testing out the new off-road equipment, and honestly, I wasn't very impressed. It was marginally easier because the castors were up, but otherwise I didn't notice much difference. I knew there were adjustments to make, but after my step-son told me what time it was, I also knew they would have to wait until morning...or later in the morning, I guess.
During the few short hours that I slept, my mind worked out that I would need to check to see if the tires were actually inflated. My standard tires on all of my chairs have solid foam cores. This adds a little bit of weight, but reduces maintenance and adjustment issues that can lead to safety concerns. I had tried tires with inflatable innertubes in the past, and after the first one blew out, I switched right back to the foam core but, as a result of trying the inflatable tubes in the past, we have a bicycle pump. Around 7:30 am, unaware that her husband had only slept for about 4 hours, Irena sent me a txt asking if I was coming up for the day. Seems my wife was missing me as much as I was missing her.
I fed the animals and then went out to the garage to finish adjusting the frame to the new tires. Sure enough, the tires were not inflated, which helped explain why the brakes were so far off too. I spent the next hour sitting on the floor of the garage, holding a bicycle pump against the ground with my residual legs while working the pump with my arms and back. After pumping 63lbs of pressure per square inch into the main tires and 40 into the front tire, adjusting the brakes, and also loosening the steering on the front wheel, I gave the off-road set up a second try. The difference was amazing; I could move across our front yard almost as easily as moving across our living room!
(While it made mobility easier, please keep in mind what I said at the beginning about the physical and potentially emotional tax that people with disabilities pay to attend public events. I hadn't even made it out the door yet and I'd just expended hours of energy just to get ready, reducing the amount of time I would be able to enjoy the actual event before the discomfort would turn to pain; at which point, I would need to mask it so those around me could continue to enjoy their time. I also had to make the decision then and there to not wear the prosthetic legs. When I am tired there is a greater risk that I will move or shift weight in the wrong way and the AI in each knee will misinterpret my intentions and do something unexpected, which almost always results in a fall, though one day I hope it will result in someone who deserves it getting a good swift kick...but I digress, back to the story).
Before leaving I had to figure out how to store all of the new components in my car so that they would be accessible when I arrived for me to rebuild the off-road version of my folding chair beside my car at the destination. I wasn't even sure how I was going to transfer, but I always find a way. After driving for an hour, I arrived at the area around the fort where Feast is held. This situation made the parking at Clayshire Castle seem luxurious. There were people who lived around the Fort selling parking in their yards for increasing amounts of money as you got closer to the event. There were police directing traffic, but somehow I missed the first entrance to the actual parking area and got rerouted through a residential neighborhood to the other side of the event. At every potential parking area I asked about wheelchair accessible parking and no one had a clue, they just kept motioning me on until I finally got to someone who said "there's no such thing, but drive up to that police officer up there and ask him what you should do".
It's a public event, and I assure you that the ADA requires accessible parking, to the best extent possible, regardless of the environment the event is being held in, but there was no point getting into it with any of these people. The officer that I had finally reached was actually manning the entrance to the Feast parking area at the west gate to the event. He said "you'll have a hell of a time in their with a wheelchair, but there is a parking area designated for handicapped people in there somewhere; pull in here and ask the lady in the green vest up front." I decided not to get into how offensive the term "handicapped" actually is and thanked him for his help. He moved a cone for me and let me drive through. No one ever asked me to pay for parking as I pulled in.
I asked the young woman he had pointed out where the wheelchair accessible parking was and she pointed to an area a short distance from the gate, not the front of the parking area, but close, and told me to look for the "sign with a wheelchair". I drove down a few rows into the muddy grass covered parking area and finally saw a post with a hand drawn wheelchair sign nailed to it that looked like it would blow away with a good breeze. There were a lot of vehicles everywhere, and no actual parking spots marked out, but as I drove between the rows of cars, vans, and trucks in this section I could tell that people were allowing space between each vehicle for wheelchairs and other accessible devices to be deployed.
I figured out how to reconstruct my new off-road version of my chair and set out to find my wife. I was amazed at the difference the new wheels made in my mobility. I had attended Feast several years ago with Irena and had needed my prosthetics to navigate the more difficult terrain that the wheelchair would get bogged down in. This time I would not have that option, and I remembered that Irena or one of the boys had pushed me when I wasn't walking, instead of me struggling to move myself. This time there was no one around as I moved through the parking area, but I really had no difficulty getting to the drive in front of the gate.
I was a little concerned about getting across the drive, as it was soft and rutted from all the vehicles coming in and out and the rain the night before, but as I approached a kind woman who was escorting her children to the parking lot stopped and offered to push me across. I always appreciate it when people offer to help, and this time I was more than happy to accept. As she pushed me across, she commented on how much easier it was than she had expected; the benefits of the off-road system were readily apparent!
Once at the gate I met my beloved and was escorted into the mid 1700's. (I always want a re-enactor to react to my assistive technology as if I am some time traveler or sorcerer from the future, but no one ever does).
We made our way through the market and listened to the drum and fife band that was performing in a small arena nearby as we found some delightful food...sausage-on-a-stick, which was really very good. The new equipment performed better than expected. Uphill was still uphill, but it was so much easier to maneuver and get around the event!
We covered all areas, some multiple times, and really, the only issue that I encountered was that most of the vendors tents were not set up to be accessible for a wheelchair user. The extra front wheel was an issue that I was bringing into the environment, but really it doesn't stick out much further than my legs would if I had the footrests elevated even the slightest bit. Sure, there were some vendor tents that I could enter, but they weren't set up to allow room for someone in a wheelchair to maneuver and shop independently. Even if I could get in, I would be an obstacle to anyone else, so stayed outside and trusted Irena to do the shopping. Which is how I wound up purchasing $60 worth of mid-1700's trading schwag. (I'm not going into detail, use your imagination).
While I paid some of the pain tax up front by getting the off-road wheels setup, the improved maneuverability and independence provided by the new wheels restored what I lost in those few hours by allowing me to move easier and more comfortably around the event. That said, it was so much easier to move around that I also moved around a lot more than I usually did and took more of the pushing on myself. The next day, and really for most of this week I have been paying the price for over doing it on Sunday, but in a good way.
From an accessibility standpoint, while the Feast of the Hunter's Moon is welcoming to people with disabilities, their organizers have a lot of work to do to better train the community to handle questions about parking, etc. They could move the accessible parking to the closest parking sections to their gates...I recognize that I didn't have an opportunity to check out the accessibility at the other parking areas, but can be pretty sure it's about the same as where I was. In regards to the vendors tents, these are shops designed to be mobile for trading outposts in the mid 1700's. I recognize the authenticity that they are shooting for and the restrictions they face when accommodating disabilities. All they need to do to be accessible is recognize potential customers who may not be able to physically enter and offer to assist in their shopping. I didn't experience that, but I also didn't put myself in that situation much while I was there, either. I will say that I was definitely not the only person with a wheelchair, manual or electric, at the Feast of the Hunter's Moon this year, and that was good to see!
Three very different public events in the past three weeks, all in different environments and, while all are attempting to be welcoming to people with disabilities, the one thing that holds true across all of them is a need for training and consultation from someone with a disability who can help them truly embrace the spirit of the ADA in their approach to accessibility. People with disabilities can reduce the toll that attending public events will take out of them by utilizing the right assistive technology, which is not always easy to acquire, and good planning, but we need society to meet us in the middle to make such events truly accessible and inclusive. Feel free to ask questions or let me know your thoughts in the comments section. I will try to respond to comments at least once a week. If you wish to contact me directly, or would like to learn about my services, I can be reached through walkingspirit.org. Please enjoy the music in the video below!
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