Cassidy Huff
Hello Lovelies!
This video is wonderful, because it doesn't spare anyone's feelings. Miss Huff is just knitting and informing her audience of the best ways to approach (or not approach) someone with a disability. It triggers all of my memories of similar cringe-worthy encounters I've had with people (one ironically in a grocery store) who thought they knew me well enough to corner me and grill me on my life.
"We don't owe you an explanation"
I wish I knew what makes people think it's okay to rapid fire questions about Cerebral Palsy and my specific challenges in public. I'll use another example. Getting onto a bus wearing sunglasses, no one could see my right eye paralyzed inward toward my nose. I've been called cross-eyed, people assume I'm stupid (sometimes they use a slur)...I just don't like to make it public knowledge if I can help it while I'm out. And all the seats in front where the disabled are supposed to sit were taken--one by a man simply assisting a woman in a wheelchair because of a broken ankle.
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I asked if I could take his seat and he rose reluctantly, saying "I don't know if you're disabled or not..." and it haunts me. First of all. Do not assume a diagnosis!! For the love of all things holy, some debilitating disabilities cannot be seen by the naked eye. That does not give you any right to make the judgement that someone is undeserving. Secondly, to this very moment, I regret not whipping my glasses off, looking him in the eye and delivering a scathing retort. But Cassidy very quietly and directly makes an excellent point. We do NOT owe anyone an explanation. My challenges are private information I only share on an as-needed basis, and when I'm out in the world trying to get from A to frickin' B without having to explain myself to some ignorant individual lacking empathy, it takes too long to enumerate what I deal with. And not to put too fine a point on it, but what business is it of yours anyway? Are you suddenly the gestapo making judgments on who has a right to be out walking? That analogy hits a little hard, but I think it fits. There once was a time in Chicago when "ugly" people were not allowed to be in public. That pretty much edges me and anyone dealing with similar asymmetric features way out of the picture.
Even my boyfriend at the time of the bus incident knew not to occupy the seating up front. Clearly the guy imitating Rosa Parks for the Able-Bodied, nearly denying me a seat, had never ridden a bus before. Maybe he only was because he found out an accessibility van is way outside the average person's price range but still needed to be there for his wife, so they thought critically. Bully for them. It still didn't give this man the right to speak to me that way.
Whereas I was extremely familiar and had been riding the bus daily for a number of years, this man decided on his first ride that he deserved "princess treatment" for escorting his poor wife. Sorry guy. Another rider educated him on proper etiquette once I'd taken my seat. I had the walker folded in front of me, but clearly our man didn't see what he didn't want to see. Even if I had shown him my eyes by way of explanation, I'm not sure it would have even registered.
"We are not an encyclopedia"
A very, very triggering question I used to get asked all the time is, "what fills your day?" Well ma'am...what fills yours? I get up, go to the bathroom, drink coffee, have breakfast, make phone calls or run errands, have lunch...you want me to tell you what I do then? I'm a human being like anyone else, doing the best I can, and it's not easy in a world built without a thought for people like me. Some days it's not even worth going into public spaces. No matter how confidently or gracefully I try to enter a space, sometimes it doesn't even matter at all. All anyone sees is a woman with a walker, and I can feel them tense up. "Is she okay?" "Should I call her mother?" "Is she going to fall over?" "Does she need water?" It's most likely not all in my head. I've had so many encounters with well-meaning but utterly clueless people over the years, I can almost bet my life I know what they're thinking.
My quest to get the curb leveled outside my building is also frustrating and demoralizing for this reason. So far, the best Management can do is a 20"-wide portable ramp on one side of the white lines for wheelchairs in the parking lot. I have made myself extremely clear that this is inadequate and unacceptable. There are concrete ramps on either side of the curb, but they are bordered by shrubbery and vines that are frequently overgrown. In the winter the enemy will become ice build-up on the ramp. To their credit, when I bring any of this to someone's attention, it is taken care of immediately. But I shouldn't have to bring it to anyone's attention. Why can't they just make their properties accessible and available to all? They have frequently called me the point person in this endeavor. As if I speak for everyone.
My entire point has been through all of this that disabilities vary. Accommodations need to be broader. They would benefit all instead of just one. Just placating me with a single leveler that can easily be shoved aside is laughably insufficient. I haven't done any more campaigning. Let them be wrong for now. Maybe someone will sue over a fall this winter, and they'll be forced to address the issue. Maybe the money for appropriate curb lowering will actually appear sometime down the line. If it does't I'll most likely have moved to another state by then anyway.
"We are just living our lives"
Remember the thought bubbles I listed in the heads of people watching me exist in a public space? They are from very recently, when I was in a private but (supposedly) open-minded space that helps people. Some one pitied me for saying I was going to take ride share home. And the comments they made were so quick and varied I had to tell them (politely) to back off a little bit. A moment later I went outside to await my ride. It's not pitiable that I had to get a public service to take me home. God knows I prefer it to the bus. This is my life now, and for the most part I thank my lucky stars for every second of my life; it's 2,000% superior to the lives I've known in the past, when I had no mobility beyond immediate family, or no money because I was supporting two people on one disabled individual's support, or I had no friends around me to pay for/provide a ride. This too would have taken far too long to delineate for the ladies ringing their hands in the air conditioning, so I just let it drop. I relished the heat and sunshine.
This entry could be a lot longer. Miss Huff made some excellent points. But for the sake of time, I will let this entry end where it is. Suffice it to say, I would love to sit and have coffee with this girl! She seems brilliant and insightful, and I'm sure we'd have a 3-hour conversation. That is definitely the minimum for going out with me:) If something doesn't last at least as long as it took my ride to get there, it is not worth the expense. But I do try to have fun when I can, as we all do:)
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