Well, it is close to Halloween and I think I fit right in…with the ghosts. At least the part of me that dons an invisible disability like it was a white sheet with 2 holes for eyes cut into it. For the purpose of this blog you can call me Casper. For the younger generation, Casper was a cartoon that originally aired in 1950 and was about a friendly ghost named, you guessed it, CASPER!
This month is Disability Awareness Month and this week specifically is National Invisible Disability Week and ironically, I as Casper the Invisible Disability Ghost, had the opportunity to have an interview with Pennywise, that terror of a clown who ruined the circus for so many children (and adults alike). This is an opportune time to that share the transcript of that never to be aired interview. Why was it never aired? Besides being totally fictional and not a reflection of any actual podcast or interview I have done, you will find the reason laid out at the end of the transcript.
Casper: Thanks for the interview Pennywise, I hope to shed some light on what it is like having an invisible disability.
Pennywise: So what's with you? I don't see any crutches and you have a great ghostly sheen. I was supposed to interview someone who is disabled.
Casper: We might be able to stop here, I think you just made the gist of what I needed to say apparent.
Pennywise: Oh circus peanuts! I forgot my wallet! Hey, since you're not disabled, I think there is a good chance you can run across the street and limbo down the sewer to get my wallet for me. I like to carry red balloons wherever I go and I need to buy some more.
Casper: Now? Well, I actually do have a disability, you just can't see it. I wish I had the stamina to "run" and get your wallet, but I have this thing you can't see called called dysautonomia. I have a hard time regulating basic body functions like my temperature and blood pressure. It is acting up at the moment. It’s tiring just doing this interview. I also have this thing called Ehlers Danlos Syndrome, EDS. It's a genetic disorder that makes me hypermobile-you know, too bendy. It has to do with collagen. You can't see that either, but it is there and it holds us together.
Pennywise: Oh, then you shouldn't have any trouble bending backwards and slipping down the sewer to get my wallet.
Casper: Whoops, I meant so bendy that sometimes my bones and ligaments slip out of place. It hurts a lot.
Pennywise: Can't you slide them right back where they are supposed to be?
Casper: I think you are missing my point.
Pennywise: Well, if you really think you can't do that, while we chat, help me blow up my last balloons. I need them to show to some kids later.
Casper: I don't think I should, I forgot my epi-pen and I'm allergic to balloons. I have another invisible “thing” called Mast Cell Activation Syndrome. It means I can react to lots of stuff with no notice. Sometimes even stress makes me turn red and blow up like one of your balloons. It's also why it looks like I am wearing makeup when I am not. It is called “flushing”.
Pennywise: Perfect, Can you just touch this (pushing a balloon towards Casper)? Once you do that turn-red and swell-yourself-up trick, I can tie a string to your ankle and we can go looking for some unsuspecting children.
Casper: Not a good idea.
Pennywise: Oh elephant dung! Then can I use your big wheel to go get balloons myself? We can finish the interview in a sec.
Casper: Do you mean my mobility scooter? Have we really started?
Pennywise: Yeah, that is a sweet ride. I want one. Where did you get it, Amazon? Wait, why do you need one? From what I can see of your ankles, they look fine-even if they are a bit blotchy.
Casper: My scooter is considered “durable medical equipment” and was prescribed for me because I have trouble walking and standing too. My ankles are blotchy because blood pools when and where it shouldn't. It is a symptom of Postural Orthostatic Tachycardia, POTS.
Pennywise: If I can't see this POTS AND PANS thing, is it really there? Wait, why is your dog dressed up, it's not Halloween yet?
Casper: This is my service dog. She is wearing her official vest. The service vest lets people know she is working and not to play with her. It is her job to let me know when I am going to faint or to comfort me if I am anxious.
Pennywise: You don't look anxious or upset. Are you depressed? You are an attractive ghost, you have strong looking ankles, your face is glowing, you have a big wheel I really want and a dog to wait on you hand and foot. What do you have to be upset about?
Casper: You’re upsetting me now.
Pennywise: You might be getting hysterical. Is it that time of the month? Wait, are you a girl or a boy ghost? Hysteria is a real thing you know, I am seeing it through you right now.
Casper: (sighing) Have you ever had a headache?
Casper: Can you see a headache?
Pennywise: Yes, because I wear my pain on my puffed sleeve.
Casper: (sighs again) Let's try again. Have you ever had an itch?
Pennywise: Of course I have, haven't you?
Casper: If you had an itch and asked me to scratch it, how would I know where to scratch? I can't see your itch.
Pennywise: I'd tell you.
Casper: Why should I believe you?
Pennywise: Because I don't clown around. (said sarcastically)
Casper: It's not fun when people doubt a legit itch is it?
That is what it is like having an invisible disability. People roll their eyes at me when I walk out of a my car with handicapped tags, but I don't look handicapped, I've been scolded for not putting a shopping cart back when those extra steps would have caused me to be physically sick. Friends have a hard time understanding I might have to cancel plans at the last minute because they don't understand pain levels can skyrocket without a moment's notice. Sometimes people even think I have made up my disability for attention.
Pennywise: Have you?
Casper: (defeated sigh) Sometimes people with invisible disabilities need psychological services to deal with their illness and also to learn how to manage the way they are treated by judgemental, assuming clowns, Pennywise. It leaves our self esteem in the sewer with your wallet.
Pennywise: Hey! No need to get personal. I like the sewer and leave being a clown out of it.
Casper: Ok, I apologize. How about this, I'll make a deal with you. I'll stop getting personal if you stop assuming that just because a person looks able-bodied, they are.
Pennywise: (with a sinister smile) I will think about IT.
So went the interview with Pennywise. It was never published because, ironically, Pennywise felt it cast him in a bad light.
Personally, I don't think that people intentionally mean to cast themselves in the same light as Pennywise did. They just don't think outside of their own bubbles.
Moral of the interview: Be kind, you never know what is under a sheet with two holes cut out for eyes.
Remember, some disabilities are invisible!
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