The day I learn about Ableism and family miscommunication
[Note added on 29th December 2015: I have received some feedback on this post and I want to make it clear that I am not trying to upset anyone by my personal reflections. These are just that, personal reflections of the day. Some people have read it and have thought it was targeted at them. This not the case. However, I hope it make helps people to think. ]
Yesterday was a pretty weird day for me. I went to a fundraiser for a special school which is somewhat absurd in itself. I went in the hope that I could meet up with some of my family. (Some who know me are possibly going “what the!?” already.) On arrival I was at the door trying to pay to get in. It was a rock music event at a hotel in the northern suburbs of Adelaide. Stupid me thought, as it was a fundraiser for children with disabilities, that there would be some level of disability awareness. Ableism met at the door. Well, actually she followed me from the taxi and stayed with me most of the afternoon and into the evening. Finally, one of the door people suggested that I might be asking how much is it to get in, me waving around a fifty dollar note and asking repeatedly how much is it to get in.
Recently my brother and I have been in contact and, with his business being one of the sponsors of the day, I thought I would go hang out with him and the family. He had to work in the afternoon and was coming later, yet the rest of the family arrived soon after me. Without going into too many details, it was one of those awkward situations with all of us not knowing what to do and I didn’t get to meet them. The area for the children to play was, ableism would have it, in a raised floor part of the room without a ramp to it. So, even if I decided to break the ice between us, ableism would ensure that I would have to fight the steps and make a bigger scene than I wanted to. We spend most of the afternoon periodically glancing over at each other in the hope one of us would cross the divide. Afterwards, I realized that we all wanted to meet each other yet each was too chicken to do so.
One of the pleasurable moments was when my brother did finally arrive. We shared our first beer together and I met my lovely niece, Zoe. I went outside to talk to Peter who had come to take me home. With me just meeting my brother we decided that he would come back much later to maybe catch a bit music and to take me home. The kids were getting restless and they thought I had left, so they went home. In the end, I was alone in a room of people for the rest of the evening. On one of my trips to the toilet, ableism followed me. On the way into the hallway leading to the toilets one of the wheels on my wheelchair caught the door jam thus the door closed behind me meaning that on my way from the toilets I had to wait for someone to go through the door before I could go through to. Yet, another way, subtly ableism attempted to remind me of my place.
Reading for my PhD, of late I have read about Crip Theory and ableism. In short, ableism is like racism and sexism except against disabilities. Robert McRuer, a disability scholar, refers it as compulsory abled-bodiedness. The need to uphold able-bodiedness in society. I felt it strongly in that room. Apart from my brother, only one person engaged with me in a conversation asked me if I needed a drink in the eight hours I was there. Even, when I went to the fundraising table, which I thought was staffed by people who work at the special school, to buy some things, Ableism made her presence known again. With money clearly in hand and waiting to be served for at least ten minutes, no one even asked me if I wanted to buy something.
Yes, I could have been more proactive and used my communication device to try to initiate conversation and demand service. Yet, ableism had her way. She had worn me down and successfully planted self-doubt. Siting there listening to the bands, I pondered. What could I have achieved by staying at home working on my literature review? How this experience relates to my PhD research? I thought about other people with complex communication needs, could they successfully socialize and negotiate a new relationship in that environment, an environment which is usually seen as a place where one can find a potential partner. I wanted to come to a conclusion, yet I thought it would be best to leave it up to my PhD research to answer. What could I learn from this crazy day?
During the evening, my brother and his partner texted me through Facebook and cleared up some of the things that happened. We arranged to catch up again soon. I experienced family miscommunication first hand for the first time. Family!
Peter returned ready to enjoy some music but I was ready to go to get takeaway, I was bloody hungry by then! I could tell he was looking forward to listening to some live music yet I needed to get out of there and eat. Like a good neighbour and a true friend, he took me through the nearest good Hungry Jack’s, fed me the meal and took me home to throw me into bed. I went to sleep understanding a little more about ableism.
[Edited: A correction, I have learned that the people on the door and on the trading table were not staff of the special school, but dedicated friends and supporters of the organiser of teh event who want to make a difference. In no way is this an attack on the event, venue or the organiser of the event. It is just my reflection on my lived experience and teh literature that I am currently reading.]