Sometimes the world does not know what to make of me. I have been stared at for all of my life, sometimes out of interest and curiosity, and just as often out of plain rudeness. Even though I like to think of myself as a routine part of a diverse society, it seems that so many people are just not there yet. I suppose the sight of me is discombobulating, or at least surprising sometimes. My small, slightly crooked frame resting in a black wheelchair that is, and always has been, a little too big for me. The constant jingle of the lanyard around my joystick, and the unnecessary number of pens spilling out of the side pockets. The shreds of colored fabric, the pink exercise band hanging limply off the back of my chair, the ever-growing collection of social justice, dark humor, and snark themed buttons rattling on my headrest.
It’s a lot to take in sometimes. I get that. Still, it can be saddening to know that people often don’t know how to look at me. Even sadder is knowing that some people just won’t look, because it’s easier not to, and easier not to think about the attitudes and assumptions that put the uncertainty in their gazes. Trust me, I don’t enjoy being stared at like a lab specimen, but I’ve spent many years thinking about what to do with those stares, how to handle them, and how to prevent them from becoming downcast eyes that render me invisible. I don’t want to be stared at, but much less do I want to vanish, to become unseen by a world learning how to “be polite”.
This is what I believe occurs when embarrassed parents redirect a child’s widened eyes, and shuffle them away, as if hoping that child will forget what, and importantly, who they saw. From that well-intentioned attempt to salvage a child’s manners comes the beginning of the fear, the shame, the idea that my corner of the world is not worth being understood. That kid grows up, and becomes an adult whose gaze shifts dutifully towards the ground, because that is the procedure when making sense of my presence. How much I wish that each of those embarrassed mothers and fathers would tell the child that it’s okay to say hello. How much I wish they took the time to reject the culture of shifting eyes, mystery, and misunderstanding. I love children, and when the tiniest, most impressionable among us are hastily ushered away from me, I begin to lose touch with those that I consider our hope for the future.
Just several weeks ago, as I approached a local pizza restaurant, a small girl with brown hair and chubby cheeks was pressed against the window. Her tiny finger pointed toward me, another trying to find a place for me in time and space. In this moment, I decided what it was I had to do. This precious child was looking at me, and not in a situation where she could be whisked away before I looked back. Returning her gaze, I lifted my hand and waved. Then, something beautiful happened. She waved back.
This simple exchange made us human to one another, and gave me the hope that this little girl may continue to wave back as she grows older, keeping me visible to the world around me. The glass between us seemed a perfect metaphor. We are living two very different lives, and in some ways, there will always be a slight space between our worldly experiences. Like two people from drastically different cultures, some things in our lives will distinguish our fates from each other. But ultimately, we can choose to not just look at, but to see one another. We can notice what we do have in common, and convert the silence and fear to appreciation for each other’s humanity. We can affirm the presence of all people. We can wave back.
A beautiful essay, Kathleen.ReplyDelete
This is wonderful. Thanks for writing.ReplyDelete
Thank you everyoneReplyDelete
This invisible/stared at problem is certainly that. There are many ways that we wheelchair users are damned however. Your wave worked in this instance and was perfectly appropriate. The question is, if the pointer and starer had been someone who was an older adult would your wave have done good? Perhaps. I think that often the person would think that you also had a intellectual disability as well and you didn't know that you didn't know that person, that you were a stereotype “cripple retard”. Or it may be accepted by that person that it was ok to stare and point cos you waved.ReplyDelete
At the same time if we react to adults staring, pointing, laughing, name calling, wanting to heal, patronising, insisting on helping when it is politely declined with anger, we will equally be stereotyped as “angry, bitter cripples”.
Reactions need to be situation appropriate.
Example from my life where I was damned either way:
There is a bike shop next to a deli near my place. I sometimes go to the deli to get milk. There is a ramp to the deli owner’s door but the bike shop Manager displays bikes on it. I approached the Manager once and politely explained the problem. He was sympathetic and it looked like he would address the problem he had caused. Weeks later I went back and the ramp was still blocked. I went into the bike shop and spoke to the shop assistant as the Manager was out and asked her to pass on to him that the problem still was a problem. Then weeks later I went there and the problem still existed. I asked the manager to come out again and explained the problem again. He complained about my request. I was being more assertive this time and saying that he was blocking my access etc. He was getting annoyed now and then looked DOWN on me and smarmily spoke down his nose saying “Have you ever thought that if you approached this in a more polite manner that you might get somewhere?” Now there is a myriad of topics for discussion in just that one sentence. But I nearly digress. WELL that’s when I exploded and said to him.“ So you really think so? I have spoken politely with you once, and then to your assistant and now I am here again speaking to you. I am out of polite. How dare you patronise me like that!!!!!”. Which of course would have led him straight to the point of “Angry, bitter, ungrateful cripple”. At this point in time we can not often “win”. However we will fight on against ableism and the soft bigotry of low expectations. Slowly, it is changing. The more we be ourselves and act and react as the situation necessitates then the faster it will change.
I have SMA and am 58. I have fought ableism all my life and have used politeness and conciliation and also the DDA as needed and it is slow going and my attitude may be seen as cynicism. It is not. It is born of long experience.
It is refreshing to read your blogs and know that the work against ableism is forging on and will continue to do so long after I am gone.
I haven’t written for a while but my blog is here:
Post Script: The deli owner did not care that I could not get in his shop nor did he think it was unfair that I had to shout from the footpath to be served because “he didn’t mind coming out”!! I went to the local council but as the shops were set back and the ramp was on private land then they couldn’t do anything. So then I would have had to use the Disability Discrimination Act and lodge a complaint which if then not resolved by conciliation to Federal court. But as neither shopkeeper valued me as a customer I really could not be bothered. I went to other shops and bike shops.
Soon the bike shop moved and the deli closed down. I wonder if my few dollars and cents could have prevented that. We will never know.
Also I do not use the R word lightly here. I use it deliberately to illustrate the attitude adopted as it is often what is thought, if not shouted.
Thank you for sharing your thoughts. I agree- children should be approached much more softly than adults, as I really believe that children are still earnestly trying to learn. The wave, in a larger sense, is more meant to be a metaphor for acknowledgement as people, not always a literal wave! With older adults, I try to say "good morning" or "excuse me" or something that will break the staring stupor and make them realize I am aware of them and their staring! It really startles people when I say something rather than serving as their "museum piece". I totally get you that politeness doesn't work for everyone... I like to try it, and if that fails, I try to outsnark them in an intelligent way, which is always fun. That does not even begin to tell of the bunches of letters I've written and complaints I've filed! Children, though, especially very young ones, I think deserve to be approached very gently because unfortunately, many of them have intentionally or unintentionally ableist parents who I want to help them rise above! I also just hate the feeling of being not even looked at/awkwardly avoided like I am not a human. Thank you so much for your insights & keep up the great work.Delete
Also, I agree.... the R Word is a hideous, but sadly very common remark. Boo R Word!Delete