A few days ago I met with a man who like me has a neuromuscular disability and uses a wheelchair. But instead of feeling energized and liberated that I found and ally in my struggle for inclusion, the situation left me rather sad and disenchanted. He's about twenty years older than I am, but despite him growing up in a different time you could draw parallels between our lives. Some of the things we experience, some of the issues that shocked us and made us reevaluate how we see our disabilities and our lives and how pushed to the limit we were set on a path of advocacy we would never think to choose to pick for ourselves were essentially the same. We're a generation apart. If I'm still struggling with some of the problems he was decades ago, maybe some things never change. Who am I thinking that I can come in with my enthusiasm and energy and make a dent? Maybe it's a battle we already lost. While not to say that he was in any way resigned- he is one of these people constantly on the forefront of disability issues, in your face and not backing down, I found it troubling how accepted that this is what his mission in life would be from that point not, and as unfair as it may be this how how people see him, feel and react to him when he's in the room. Almost as if he was invisible as a person and all that everyone else notices is the equipment, the chair, the gadgets, that are external to him. This is the way he sees his struggle- although he's not backing away from a fight he accepted the framework, the narrative, the box that he's in. I want to throw out the box, kick in the door and the window for as long as I have the energy to do so. But one thing he did say left me speechless and nodding. When I told him of that look that I get sometimes when I'm at a bar or club and people pass me by. "I know it well"- he said. "It's fear". The fear not of me, who I am or what I do. But a fear of ever becoming "like me". Whatever it means to them. This is an emotion and a reaction that I truly don't know what to do with. When they look at me they don't see "me", but a projection of whatever it is that they associate with "being in a wheelchair". It has nothing to do with how I see myself or what I value and enjoy about my life. They can associate any number of negative stereotypes, feelings, ideas with me as they see me, but it's them not me. I would even think that contempt or a strong dislike would have been a better emotion than fear. Because it's something completely beyond my control, and it's not simply an issue of changing someone's mind through education. That day I went home thinking: "Have I been wrong about assessing the "perception problem" all this time? Fear is a much more powerful trigger than ignorance. Ignorance I can deal with. You combat it with knowledge. Fear you just can't compete with. And then perhaps it just goes from there. You simply don't want to think about the things that scare you, so you choose not to think at all. And it's odd to think, that for someone who has never met me or spoke to me, I'm his boogeyman. It's two days later and I still don't have a good answer.
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