“Hold my hand and walk with me. We must break the back of social inequity; We must empower every individual with a disability To live with dignity in an inclusive society.” William E. LightbourneTo every person living with a disability, I say to you I see you. It still annoys me beyond belief that people still treat me differently due to my physical differences that they know nothing about. Like everyone living with illness or any differences, I have numerous stories of being ostracized for trying to live my life. I try not to bring attention to those stories because I don’t believe they are worth my energy or time. However, this past summer I encountered an individual that I feel I need to draw attention to. Or rather, I need to draw attention to his behaviour and to let you all know that we do not deserve this attention.
This past August, my husband and I attended the Edmonton Music Folk Festival. We have attended it for the past 10 or so years and it is really a highlight of the year for us. The reason we like it so much, is that even though I have MS and need to use a scooter to attend the event, I always feel very comfortable and all the staff and volunteers at the event are amazing. In terms of a large event, the EMFF has done an exemplary job of making changes to make it accessible. I have always felt that a main goal of the event is for everyone who attends to feel included with as little awkwardness as possible to the individual in attendance. It seems like everyone wants to make me and others feel as comfortable as possible. They have an accessible seating area, that is covered for inclement weather, lots of accessible parking, and a separate gate that is accessible for people with wheelchairs and other mobility devices. I cannot speak highly enough of the Folk Festival for how much they have done to create a feeling of inclusion especially for such a large event. This is the first year that I have every felt singled out and extremely uncomfortable about how I was dealt with by a volunteer.
My husband and I arrive every day for the festival half an hour before the gates open. We park in the accessible parking area, unload my scooter and all our gear, and head to the accessible gate to line up. This year was no different. The staff at the gate were known to me due to the fact that I have been going for years. We chatted it up while we waited. There were some technical issues near the stage, so the gate opened a bit later. No problem. We waited patiently enjoying the sun and conversation. A brief time later, the staff opened the gates and told us to go in and have a good time. This is where the problems started. I must give a bit of information about the facility to create understanding. It is and outdoor event and takes place on a very large hill. The accessible seating area is at the bottom of the hill to the left of the stage so that people in wheelchairs don’t have to sit up the hill. I however, never sit in that area. It is a wonderful option, but I attend the event with a lot of people. If you sit in that area, you are only permitted to bring one person with you. For that reason, it would be isolating for me to sit there. Also, although I need a scooter to get around the vast event, I am capable at this time of getting off of my scooter to sit in a chair on the hill. That is why we get there really early so that we can get a spot fairly low on the hill. That day was no exception. When we got there, there was no one on the hill though and they were telling people that we had to wait because there were still some safety issues with some equipment near the start of the hill. No problem again we said. Things happen. We moved to a different area that was far from the area that was being worked on. That is when I encountered a volunteer that made the event horrible for me.
An older man approached my husband and I and said that we needed to go into the disability tent. I told him that we did not sit in that area. He said we had to and that I was disabled. I said I was aware that I was disabled but that I was capable of not sitting under the tent. He walked away and we proceeded to move farther away from the stage so he would not think we were in any harm. He came up to us again and reiterated I was disabled and that we needed to go into the tent for people like “me.” People like me? What does that even mean? Dutch people? Women? I got so angry at that point. I told him that I have been attending this event for 10 years and was just doing the same thing that I do every year. He then went on to tell me that I shouldn’t have entered the gates if I wasn’t going to sit in that area. I explained that the gate attendant had let me in or I would have waited outside until I was permitted to go inside. I was then told by him that I was scamming the system. Really? You think it is cool for a 44-year-old female to have to use a scooter to get around? I asked if he wanted me to go out to wait to come back in when we could go onto the hill. He said I could but that I would have to go to the back of the line. At that point, I was so embarrassed and shaking. There were able bodied people moving all around the event heading towards the beer gardens and the vendors. I started to head in that direction. He followed me again and told me that I could not go to that area yet. My whole body was shaking with rage and embarrassment.
I would like to point out that I am not easily angered by ignorant people. I have encountered my fair share. I used to be a teacher and an assistant principal. I am fairly good at handling conflict with angry people in a calm fashion. However, I kept thinking about what if someone was attending this event for the first time? What if the were someone newly diagnosed who had just worked up the courage to attend an event without knowing what to expect? They would likely never have attended again. I had to go talk to someone to point out this unaccepting attitude that was shown to me. I went over to the information area and asked to speak to someone about a complaint. They instantly had someone come over to talk to me. She listened as I recounted what had happened to me. She was so upset that someone had made me feel this way. She told me if I saw him again to note what colour his shirt was so that she would know what department he was from. She reiterated that the entire goal of the event is to promote inclusion and that inclusion does not mean you need to be isolated to one area. She asked if I would write a letter or call the main office after the event to let them know about the issue so that they could include more training next year for volunteers, so this does not happen again. I felt heard by her and felt like she would do something about this issue.
I acknowledge that people have bad days. It happens. I have had my fair share of them. However, all I was trying to do was to attend a festival that I love and was made to feel like a scammer and that I was trying to get away with something. For all of you who have been embarrassed and singled out while trying to live your best life, I hope you can brush it off, create some education and keep going back. I know for me, I will be back next year to the Folk Fest and will keep being me and try to keep informing people about how strong, different-abled people deserve to live in the same world as everyone else. I will not be lumped into one category.