Friday, I went to the Disability Pride March in Adelaide and on reflecting on it, there is so much to unpack. I won't unpack it all here now. Yes, weather was quite hot, held on a weekday mid-day and there would have been many people who were there in spirit due to the fact that their support (assistance to get out of bed and prepare for the day) didn't enable them to attend (1st point that could be expanded upon).
On arrival, I was offered a hat and balloons. I had to think for a minute. Balloons tied to wheelchairs is not really the image of what I would have wanted to present in such a pride march. I weakened and had a hat put on me which spent more time falling off my head than staying on. Why? Because I have a big head. There! I said it! I allowed a balloon to be tied to my wheelchair, but only one, mind you! I had to be seen as in the in group though it almost had me literally killed outside Parliament House. More on that later.
Number of attendees was lower than I expected, about 8 of us wheelchair users, possibly a few handfuls of other people with various disabilities and the rest were friends, family and supporters. All up there were around 60-80 attendees. Yet, one of the day's cries was "We are loud, proud, 18% of the crowd!" Would people looking on have understood what that meant (2nd, that could be expanded upon). Yes, the people using wheelchairs possibly made up 18% of the crowd, but that wasn't quite what the cry was meaning.
The pride march is a celebration of diverse abilities, yet many of the cries were demands for Rights. I personally would like to see more of Arts involved, performers etc. This march was hopefully the first of many, so as they say “Out of little things big things grow.” May future marches be bigger and brighter.
Usually, I am not one to send out a blanket invitation to an event on Facebook, but I thought this was pretty important, so rather than selecting individuals I selected the option to invite all my friends in Adelaide. This meant that a lot of people who I thought possibly would not be interested got an invite. I got to re-ignite two special friendships, friendships that expanded over many decades. One friend I bumped into I hadn’t seen for over twenty years, although we had connected through Facebook recently. I thought she had come with the people she was talking with but this was not the case. She was waiting and hoping for me to arrive. Shortly afterwards another friend arrived who I know through church. It was lovely to spend time with them as well as talking to others who I knew.
Through my studies of disability I am continually reminded of how complex the field of disability is. Diving into the history of disability and seeing the ways people have tried to understand have deepened my understanding. At the beginning of the march there was a bunch of pre-made placards. One that stood out for me to take was one which said “Not your inspiration.” To me it rang a bell. A friend with me could not understand why I would want that one, because she has been inspired (or is the correct word is “impressed”?) by the things I have achieved given that I have a disability. In recent years this concept has been brought out into the open by the Australian Comedian, Stella Young, who coined the phrase “Inspiration Porn.” Even though I can relate to this concept it is difficult to explain. Of course, I want people to acknowledge what I have achieved on one hand, yet on the other, I get annoyed when people who hardly know me say they are inspired by me, in most cases, just because of the disability I have. Another friend there tried to explain to my friend that for people with disabilities it is difficult to be anonymous in the crowd. They too often receive praise for just ordinary tasks and while this is part of it, it doesn’t capture it all.
Although, in my being, I understand the concept of Inspiration Porn, I still have trouble explaining it. At its core, a picture and video of a lovely clothed disabled child trying to do an ordinary task, such as tying up their shoe laces with one hand or using their foot to hold a comb to comb their hair - everyday stuff - is used to evoke pity. Often people say that these kinds of image make them feel better because “at least I am not THAT.” The best way I can explain it at the moment is this. Earlier this year I got to know some of my fellow PhD candidates and one was pregnant. Week by week I saw her stomach growing and toward the due date for the baby to be born I could see how difficult it was for her to move around. I could understand and appreciate some of struggles she might be facing but how appropriate would it be if I went to her and said, “You are an inspiration to me?” It would possibly be seen as more or an insult than a compliment. I think Stella best explains it in her thoughtful TED talk, "I'm not your inspiration, thank you very much."
“Nothing without us” is another one that we shouted. It is a common cry in the Disability Activist movement. It evolved from the 1990s. I feel that, like most the cries used in the march, this cry is not really understood by most people, even in the Disability field. One of my friends came up to me after the speeches and said she had problems with this cry. This took me by surprise as she has been actively involved with disabilities rights for years. On questioning her about it, she basically argued along the these lines. Leaving people with disabilities to direct and provide services for themselves doesn’t work because their voices are often disregarded. I think their interpretation of “Nothing without us” is saying services for people with disabilities must be run by the people who have disabilities themselves. I explained that I agreed with them, saying the services must run in partnership with people with disabilities, and that is how I understood the slogan. If a government or a service provider is formulating policies that affects people with disabilities then there should be a reliable representative involved. The conversation just got me started thinking, even within the field there is confusion (yet another point that I could expand on).
As we were saying our good byes and returning to our homes or places of work, my friend decided to try to put a cap on my head for my journey back home. However, like a group of highly excited young puppies on leads, the one balloon I allowed to be tied on my wheelchair got entangled with a bunch of balloons that were tied my friend’s arm. As she went to put the cap on, the group of balloons, highly excited in the wind, also tangled with the controls of my wheelchair which started me heading for the main road only a few metres away. Quickly thinking of my options, all I could do was to grab hold of the tangled strings and pull them off my control as hard as I could, while shouting as loudly and distressed as I could, in the hope people would run to the increasing entanglement of strings, balloons, controls and body parts as well. People came and started cutting the strings, although all that was needed was a flick of the power switch to save the day, yet I could not communicate that quickly enough to be of help. Cutting ties is sometimes the only thing to do. After our near death experience, with hearts still pounding, my friend offered to put the cap on me again. This time I gracefully declined. Smiles on our faces, we said we must catch up again. She went on her way while I went to talk to a guy who I had seen in other marches and who did the Welcome to Country for this gathering.
I marched with him part of the way to Parliament House. We exchanged G’days and he mentioned that we marched together before in others. His Welcome to Country was refreshing and very relevant. I had to connect with him and I am happy I did. We chatted a bit before leaving together talking about various things. At one time heading up King William Street we stopped on a corner to talk more easily. I wonder what passers-by were thinking of us on the corner chatting and helping each other out with phones. Two men, proud of who they are, different, except having a shared connection with our people, despite how society see them. A new friendship that I hope will develop over time.
Also, I am happy about rekindling a dear old friendship, a friendship that was once strong and supportive yet sadly fell to pieces many years ago because of a disagreement. The blanket Facebook invite I sent out brought him too. Once we started talking, the years of a broken friendship evaporated and it was fabulous to be with a mate again who I respect and honour as a friend. True reconciliation doesn’t always need clever words, just recognition of common ground, as well as a shared twisted, and at times wise, view of disabilities.
One of Adelaide’s most passionate Disability Activists was missing on the day and wrote on her Facebook later in the day the reason why she decided to boycott the march. She disagreed with having just one day a year to focus on issues of disabilities. We should do it every day of the year. My reply to her post was, “… I read what you are saying yet it is far more that. It is a time for us to unite, share experiences, reflame[sic] friendships and encourage one another in the struggles and achievements. It's not just education of the public etc. Anyway, you were greatly missed.”
Disability is complex in its diversity. We need to examine the kind of messages we need to communicate to the public and how to make them more understandable to all. I hope for future Disability Pride Marches that we can come together to campaign for equity and more freedom, as well as, us to unite, share experiences, ignite friendships and encourage one another in the struggles and achievements.