Episode 32: Carly Findlay, Rude People, Australia

Emily:              When can I start talking?

Kyle:                 I said go. We are going to keep that in.

E:                     Hi I’m Emily Ladau.

K:                     I’m Kyle Khachadurian.

E:                     You’re listening to another episode of the Accessible Stall.

K:                     What are we going to talk about today Emily?

E:                     We’re not actuallygoing to be talking about something by ourselves.

K:                     Really, why is that?

E:                     We have a guest with us, I love these episodes.

K:                     They are the best, who is our guest?

E:                     Mysterious guest, pleaseintroduce yourself.

Carly:               How do you want me to introduce myself?

K:                     However you want?

C:                     Do you want me to give some clues, andthen you guess?

K:                     Yes.

C:                     I go to work in a kangaroo patch. I don’t like work in a kangaroo patch that’s my means of transport. The Simpsons portrayed Australia in a really bad way. Ihave met Stella Young in person.

K:                     What? Really?

C:                     Yes, she was a friend of mine. I think that you’re like my creep heroes. Can I say creep here?

K:                     You can say whatever you want.

C:                     All right I’m Carly.

E:                     Hi Carly.

C:                     You were meant to guess who I was and you didn’t.

K:                     The audience is guessing we know who you are.

E:                     I’m going to assume that the audience was guessing based on the Australian accent and that you met Stella Young I would hope they would know, at least what continent you’re from.

C:                     Sometimes when I think to America, we talked a little bit in the green room in the green room before about the silly things people ask as a disabled person. Well, the silly things people ask us as an Australian thatcould be a whole other episode of that.

K:                     Thatcouldlike a patron bonus, like a B roll sort of thing.

C:                     I’ve been to America a few times and just the naivety of people asking about Australia

K:                     We are sorry.

E:                     Weapologiseon behalf of our country. We really do. We’re horrible people who elected Donald Trump, so we apologize.

K:                     To be fair. The only exposure that Americans have to Australia like we had the croc hunter and, that’s it. If there was such a thing like a stereotypical Australian, itwas him.

E:                     I love [0:03:02 Inaudible].

K:                     So did I he was wonderful, that’s all he had.

C:                     You should listen to or watch Please Like Me it’s on Netflix it’s set in my city, andit’s great it’s got just Thomas in it, [0:03:17 Inaudible]great Australian comedians you should watch that. Nothing like a crocodile- watch it then get back to me we could do a catch-uppodcastabout what you thought of Please Like Me. It’s got some I think it does mental illness well like it covers mental illness well sensitively.

K:                     Cool.

E:                     Kyle put it on the watch list.

K:                     I will.

C:                     Do it then let me know.

E:                     Now that we still don’t know your last name, you’re still a mystery to some people, after all that. We are going to put it in the show title. Just in case one doesn’t happen to read that, can you tell us actually who you are and a little bit about what you do?

C:                     Yes, can we have some game show music? I’m Carly Findlay I am a writer and a speaker, a trainer now. I’m not like an exercise trainer, don’t worry. A disability, trainerI live in Australia,I’m Australian. I don’t go to work in a kangaroo patch perhaps don’t worry that was just a bit of a lie perpetuated by the Simpsons. I’m involved with you guys because I guess because of Creepy the Mighty. Hey, do you reckon? Is that when we came to know each other?

E:                     That’s got to be around the time. I mean I justknow I’ve been aware of you for quite some time and then brought you into Kyle’s consciousness. We’ve since been following your work so that the lovefestis mutual.

C:                     It’s some fan girlingright now.

E:                     I can’t quite date it, but it must be Creepy the Mighty because-.

C:                     It was a bit before that I reckon I got to know Kyle before then. I mean around that time I knew Emily before then.

E:                     We are like old internet friends who have unfortunately met IRL, butwe’re trying one of these days.

C:                     In the middle of the Atlantic not in Australia. Not in America. You can come to Australiafor holidayit will fine. It will be fun. I don’t want to come to America while Trump’s in power.

K:                     We don’t blame you.

E:                     We don’t blame you.

K:                     We don’t want to be here either.

C:                     I had such trouble when I went to America when Obama was in power, andI don’t think that was anything to do with him. He’s quite lovely. Just getting my creams, I use paraffin. Getting my creams through the TSA was just- it was so bad.I got told at Louisiana airport that we’ll treat you like a terrorist until you prove otherwise.

K:                     They didn’t say that to you did they, really?

C:                     Yes, they did. They thought that the thing that the little labels on my ointments was counterfeit and also my letter. It was so bad.

K:                     Security conscious USA.

E:                     I want to say that I’m surprised by this, honestly not because I remember going through TSA and I had just been on vacationto Florida, andI bought a jar of blackberry jam. I just wanted to take my blackberry jam home–.

C:                     To make a bomb with it?

E:                     Exactly, a blackberry flavored bomb.They took my jam, andthey threw it out right in front of me, andI was little. I said to them. I was like; Ihope you enjoy that on your breakfast.

C:                     You guys have to deal with the TSA in like domestic settings like domestic flights.

K:                     Absolutely, yes we do.

C:                     In Australia we have security but I’ve traveledquite a lot now, andI don’t remember the last time I’ve had to show any form of ID when I’ve entered the plane.

K:                     Well, that’s because other countries trust their citizens.

C:                     Yes.

E:                     Wasn’t there a laptop ban that happened on all flights from the US to Europe or something?

C:                     Maybe, I haven’t traveled to Europe since then I traveled to Europe last year, andit’s the same like you have to show your passport, andthere issecurity and stuff but nowhere near as bad as we see in America traveling, no.

E:                     What happened with the paraffin did it get through?

C:                     Yes, I had an argument, andI cried, andI swore and it got through, butit was so ridiculous they didn’t believe me. I had an extensive letter from the doctor it was an original letter so it was on proper letterhead that wasn’t fair or copied or anything. It was in color so they could tell I guess it was original. I was traveling to Europe as well. I had quite a bit of paraffin so I could get how it looks suspicious. I also look like I needto paraffin I don’t have perfect skin so why would I be carrying all these paraffin around?

K:                     It’sdisappointing you had to get to the point like, I’m glad they gave it to you, of course, but you had to get the point where you’re swearing crying before they would even hear you out.

C:                     Yes. I did quite a few stops in America. I think I went to like five states or something. I had maybe three domestic flight stops and when I was in Chicago, or maybe Louisiana, I don’t know. I said okay, so the next time I travel can I please ring them to tell them that I’ll be there so they can make a note on my file. So, I won’t have to go through this again? They said yes. Then I rang them. They said, sorry, we cannot make a note on your file about when you’ll be traveling or what you’ll be traveling with.

E:                     That’s a huge problem with transportation is the lack of communication. I mean, it’s ridiculous how surprised people are by my wheelchair. I’m like, did you read the manifest? Were you paying attention?

K:                     The answer to that is no. They don’t pay attention. Even if you tell them right to their face, they’llforget before they do something for you. I’ve had that happen.

C:                     I went through a lot of paperwork before I went and got all the stuff ready. The first time I went to America, I went to Blog Her, the conference. I went in 2012. Did you go in then? I’d hate it if you went and then we didn’t meet.

E:                     No, I think I went in like 2015 or something.

C:                     I was coming back from England because I’d just spokenat a conference there and I was so excited to be in America. It was like my dream. Then she’s, “What do you do?” I said, “I’m a writer.” I was all wide-eyedand bushy tailedand then she said like, “How long you staying for?” I said, “Three weeks.” Then she asked me, “What I was doing? I’m like, “I’m going through a writing conference.” And then she said, “What’s wrong with your face?” And I said, “That’s not relevant to the trip today.” And she said, “Don’tback chatme, ma’am.”

K:                     She said that to you after asking you what’s wrong with your face.

C:                     Yes, then my fingerprints don’t work because my skin justpeels off. I don’t have fingerprints.

K:                     You could be like the world’s best criminal.

C:                     No, because I would leave skin everywhere. If I went in like a biohazard suit maybe thatwould be pretty obviousmyfingerprints didn’t work then the person before Ihad their eyes scanned. I said, could you scan my retinas please and then they said again don’t back chatme, ma’am. I said they’re not going to work.

K:                     You got to let them figure it out, andthen they can be embarrassed about it.

C:                     I don’t think they are embarrassed they are just rude.

K:                     See, I told you so.

E:                     Did we even say that we were going to be talking about obnoxious things that people say because I feel like you’ve already touched on like, 20 obnoxious things.

K:                     We did, butit was so–

C:                     Do you know [0:11:44 Inaudible]Duncan she’s Australian activist here, andshe’s a good friend of mine. She’s a diagnose MPT. We always laugh at this. We were talking about this last week she went to America, andshe’s only got one hand, and they said, put both hands on the thing. She saidI don’t have both hands. They’re like, no, we need both hands on the on the scanner.

K:                     I don’t know what to tell you.

E:                     Let me produce that extra hand for you.

C:                     Theycouldn’tthink out of the box. Speaking of extra hands,Stella Young used to talk about this in her comedy that you know stupid things that people have asked. Someone asked her on the train like completely random, “Excuse me, do you have a vagina?”

E:                     That’s going too far.

C:                     Yes. I think she said, “Sorry, I don’t have a spare one today.” You’ll have to go and have a look at that comedy.

K:                     Oh my goodness.

E:                     I was telling Kyle I‘ve never had people ask me like how do you have sex or anything like that or anything–

C:                     I can ask you now.

E:                     Do it.

C:                     Emily, how do you have sex?

E:                     Well you see–.

C:                     When a man loves a woman, ora woman loves a woman, a woman doesn’t even have to love a woman they could just be doing casual.

E:                     Or when they’re totally no gender binary whatsoever and you happen to have feelings for each other, andthen they use genital.

C:                     They don’t even have to have feelings for each other.

E:                     That’s true.

K:                     The Australians do it better that’s how you know that.

C:                     Really? Do we?

K:                     You don’t take any of that emotional stuff into account.

C:                     Well, I’m married.

K:                     That’s true.

E:                     Carly wins that front, I don’t think.

C:                     It’s all right. I’m glad we discussed that. Thank you for inviting me.

K:                     You’re going to take that knowledge and be inspired next time you go to the store or something.

C:                     I’m going to do a project just asking people randomly like ablebodes.

E:                     How do you have sex?

K:                     Ablebodis great shorthandI like that.

E:                     I want to go around doing that too. Just yesterday, I had to go quickly to the doctor’s office. I parked my car. I saw a woman who was juststanding there waiting for me to finish closing up my car and she’s holding the door for me. I thought, well, that’s nice. She must not be in a rush. She’s holding the door for me. I said, thank you so much. She goes, “What would you do if I wasn’t here?” I was like; “Iwould open the door.”

C:                     She’s your knight in shining armor.

K:                     She took it upon herself to like, be your savior accidentally, unbeknownst to you?

E:                     I’m not offended by that question, parse. It’s not super invasive. It’s more just one of those like, what do you think I would do?

K:                     I want to know. What do you think I would?

C:                     You would juststay in your car; you would wait for some other savior to come on. You might be there all day.

E:                     Well, that’s the other thing too is people are always like, do you need help getting in and out of your car? I was like, I don’t think I should be driving somewhere by myself if I can’t get myself in and out of the car.

C:                     Youcould usecovert assistance you need to get out the car.

K:                     Triple-Aon your one touch, she be like I have to go to the store can someone meet me there, please.

E:                     That’s not a knock on people who do need assistance but if somebody needs–.

K:                     Its lack of common sense.

E:                     [0:15:53 inaudible]I’m curious because Carly you and I have visible identifiers of disability but Kyle doesn’t, he passes unless he’s walking you have to be much attuned. Kyle, have you ever had anybody say anything ridiculous to you about your disability or is that partisan?

K:                     No, it doesn’t happen. I’ve said this to you the other day when we were discussing this topic, we should do it, no one says that to me, though. I can’t participate. I’ve mentioned on another episode that, I had to had a college friend after weeks of having me knowing me, asked me just flat out, “Hey, what’s wrong with your legs?” Just like that. So that counts, right. Plus I’ve gotten the sex question before which I think it’s interesting that you haven’t Emily it’s a disability rite of passage.

C:                     Peopleare thinking itdon’tworry.

E:                     It’s just that I’ve not gotten it in public. I’ve gotten it maybe more when it comes to dating or when it comes to friends asking personalquestions, things like that.

C:                     So in context.

E:                     Yes, but nobody ever walked up to me and been like, how do you have sex? Whenever someone points to that as the most invasive example, I justsay, I’ve not had anybody be that obnoxious. There’s still time. I’m young.

C:                     The other day. I don’t think I’ve had that either, maybe aside from dating online or on the phone or whatever. When you move from online to pone may be then. The other day I gave a lecture at a university. I’ve been doing some lecturing in the genetics school, and I did two last week. One of them was about the visibledifference. The doctors did a really good job to set the scene, andthey said at the start, when communicating to people with visible difference, you must be respectful; you must let them lead the conversation. If they don’t want to talk about something, that’s okay. Anyway, after the lecture, people came up to me, a couple of people followed me on social media and they were great.

Thank you, I came because I knew you were going to be here. I saw your tweet or whatever. One person comes up to me. First-yearuniversity student never met her from a bar or so, she says, “Iwasn’t going to ask you this, but now I’m going to.” I’m like oh God here goes. Then she says, “When you get pregnant is there a deselectiongene for your condition and would you consider a termination?” I’m like, “Well, yes, there is the geneticselection. That is a personal question. I just talked about being asked intrusive questions during my lecture. I’m not going to answer that. I have written a little bit about this.” I don’t know, I don’t even think she was embarrassed but it like it was so weird.The doctors realize just the lack of privacy I have because I have these people coming up to me to ask these questions.

E:                     That’s the big ethical monster of a question to throw at someone you just met.

K:                     That’s no one’sbusiness but yours.

C:                     Exactly. That was awkward. Then I wrote about it on Facebook. It was interesting.

E:                     It’s one of those things where I will talk about things like that, depending on context. If somebody came up to me and asked me that, that would,that would hit me. That’s a really, really personal question. I would rather somebody asked me how I have sex than if I would choose to, pass on a genetic condition to my future offspring.

K:                     That’s much more personal, I think.

C:                     There’s been a little bit of writing, I think it was in the New York Times or Washington Post, recently about this. You are kind ofdamned if you do and you’re damned if you don’t, as a disabled person. You’re damned if you’re pro-lifeor not. I don’t want to get into this ethical minefield, but you know what I mean. I don’t think that it’s something that you that you can comfortably say publicly.

E:                     Kyle and I struggle with ethical issues surrounding disability all the time. I think we’ve only touched on them in a limited amount on the podcastbecause they’re such a minefieldlike you said.

C:                     Do you want to know some other things that I’ve been asked?

E:                     Definitely. Can you surprise me will use you surprise me?

C:                     Ijusthave to set the scene though for people that don’t know my face is very red because I have a skin condition called ichthyosis. It’s very red and very sore I look like I’m sunburned, that’s the reason I get asked these questions. I guess. I was on a train, andI catch public transport most times and this man who may have had a cognitive impairment, I’m not sure, he was staring at me. I can feel people staring at me because you justknow, he goes, “Excuse me?” I said, “Yes.” He said, “Have you been licking lollies?” I said, “Pardon.”

E:                     What?

C:                     He goes, “Yeah, have you been making lollies? You must have like, missed your mouth and smeared them all over your face.” I said to him, “That is the stupidest question I have ever been asked.” That wasn’t until the next stupid question came on board but anyway that that was quite funny. He thought I was justsmearing them all over my face.

K:                     I was going to say that, that must be hard to top, butthen you said that there was another one and I’m so curious.

C:                     My husband and our successfuldate like the date that we got together because we had some dates before that went very good and he knows that don’t worry. We’ve made up, andwe are married now it’s all right. He does remind me of these three dates that he thought were great and I thought that weren’t. Our mostsuccessful datewas an African restaurant. Where I live, it’s very multicultural. We went to this African restaurant, and then a few about maybe a year and a half later, maybe I think it was even before we were married. Maybe a year and a half, two years later, after the successful date, we went back there andI was facing the wall.

Unless people were coming up from the toilet, they wouldn’t see my face. This woman came out of the toilet, andshe said, “Excuse me. Have you put on traditional African makeup to come to this restaurant?”

K:                     Oh my God.

C:                     I said, “What?” I mean my mom is South African. I have African in me, but I’m not I’m not visibly black. I don’t identify as a white woman, but I’m not, you couldn’t tell that I’m black because I’m so red. I said, “Excuse me.” She says, “Yes, your face. You’ve got African makeup on. Did you do this to come here?” I said, “No, I didn’t black up. I didn’t do blackfaceto come to this restaurant.” She was like going, but you know, your face it just, you just blend in. I said to her, “I have traditional African genes, butI didn’t put makeup on.”

K:                     If you blend in so much why is she asking you that?

C:                     Because I stand out compared to the other people, I guess. It was so weird.I said, “Look, I don’t even know what traditional African makeuplooks like, but this is my face. Thisis how I look every day.” I said, “And also that’s a really personal and somewhat rude question on two parts thinking I will black up and asking about my face.” She said, “No, I don’t think it’s rude.”

K:                     That doesn’t matter what you think when someone tells you something is rude you don’t get to decide that it’snot. That’s stupid.

C:                     My husband was justsitting there with his head in his hands going, oh my God, I can’t believe this is happening.

E:                     That’s actually a question I have for you. I talk about this with Kyle all the time, usually not on the podcast, but like, literally just last night, I started talking to a new guy, andhe was coaching me through it. I was like, I don’t think he knows about the wheelchair. I don’t think he knows about it. Profile and Kyle wasEmily, can you just shut up and relax. My concern is if I get past that point, and then I’m out in public, andthen someone makes an obnoxious comment while I’m on like, the earlydate I worry about how the date is going to handle that.

C:                     I was talking to Adam about this because I’m about to write a book. I said,“I want to talk to you about how it was not only to get into a relationship but to have to field these comments and questions?” We haven’t talked about that yet formally. Knowing what he’s seen thathappens to me I think he gets more frustrated than me. We justlaugh. There was a group of tourists that took off their glasses to look at me. Adam put on his glasses, and then got up close to them and had a look at them. That was quite funny.

K:                     That’s funny.

C:                     Then we went on our anniversary weekend to this very touristy place and it was quite hot, and then these people were walking past me and himand I didn’t really notice, butthey looked at each other and just wave around the face which often means I don’t know what to say about your face.

The guy said to his wife, “Forgot the sunscreen.” I think that he meant that I forgot the sunscreen. Adam said, “What did you say?” He said, “I said to my wife, you forgot the sunscreen.” Then Adam said, “No, you said that about my wife.” It was awkward. Adam and I will joke about that a lot now. Yes, there’s that. There was this other time, right, in America. In New York, through blogging I’ve met lots of different people who I’ve now met in person. If I’m in their city or whatever I’ll say, “Hey, do you want to meet up?” I had this friend she wrote to me about a year and a half after I started blogging on this current blog and she had an amazing name, TorenoWeatherspoon. I didn’t even think her name was real, Ithought it was one of these spam emails that you get where their names are really odd.

She wrote this email to me, andshe said, “Hey, I’m from the US Navy you are one of the strongest people I’ve met. I’ve been reading your blog blah, blah, blah.” We’ve been in touch for years, andin 2014 I met her in America, andshe came to New York to see me. She drove four hours with her daughter and another friend to see me, sothat was great. We went to this show onBroadway. I was getting a drink at the cafe. I think it was a Starbucks across the road from the theaters.

E:                     We have to know what the show is.

C:                     I was so boring it. It had Toni Collette and the guy from Dexter in it, but it was dull. I was really excited The Joneses. It was The Jonses, I think. Mr. and Mrs. Jones or The Jones. I was reallydull but Toni Collette was in it andshe is from Australia, andI like her. I was getting this drink. Iwas mid-transactionabout to buy water and paying for it or whatever. This woman from America, obviously we are in America, andthey’re so forward man. You guys are so forward.

K:                     We are.

C:                     She says to me so I was with my friend’s daughter as well and she was like 12. She says, “Excuse me, I justwant to ask, have you had [0:28:24 Inaudible]abrasion or is your face always like that?” I said to her, “That’s a really rude question given we don’t know each other.” And she said, “I can’t understand your accent.” Then I repeated it. “That is a really rude question given we don’t know each other.” She said, “Well, I justwant to know about your face. Is that [0:28:47 Inaudible]abrasion.” I said, “No,” like exasperated. Then she said, “Look, I was just interested in your face, and I thought that you’d be happy that someone was talking to you at least.”

K:                     My God every other sentence was justburying yourself deeper.

C:                     I said, “My friend here justdrove four hours to come and meet me. She’d never met me before. So yes, I’ve got people wanting to talk to me from all across the world.” She was ridiculous and then it ended. Of course, I’m the rude person here because I’m the one that has to deflect these comments.

K:                     Be rude for telling people they are rude.

E:                     That’s the thing, this is probably the weirdest thing about me and Kyle is that I struggle more with teachable moments whereas Kyle is like, bring it. For me, a big part of it is that I’m not a confrontational personand ifyou put me in a weird position,I don’t want to talk back to you or otherwise confront you for your utter display rudebullshit. I have a really hard time with that. I’ll go home three hours later and fire off a Facebook status or a blog post feed but inthe moment I can’t handle my shit.

C:                     It’s hard, andI don’t ever feel that I want to be really rude or as rude as them, butI want to be assertive and make them feel as uncomfortable as they made me feel.

K:                     Absolutely, and I think that people aren’t toldthey’rerude enough when they are about anything. When someone asks you a very personal question, yousay that was rude of you. I don’t know I mean it’s never happened to me because I think that we are all decent people. I feel like if somebody were to say that the first thing I would do is like takinga step back and like really sorry like oops.

C:                     Exactly, not argue whether it was rude or what their intentions wasor whatever. I also think like thseteachable moments or these kindnessof things can be able us with them not beingintending to be able as. I had a woman who offered me a wet wipe on the train because he thought that my face was weeping or sweating or whatever, because of the paraffin I use. I said, “No.” And then I just said, “No, thank you.” I thought it might end the conversation then, but then she insisted I must have one because my face is so sweaty and I said, “No, I don’t need one, thank you.”

Then she says, “But, your face is sweaty.” I said, “You don’t know me. This is cream. This isn’t sweat.Like you don’t need to assume that I need to be fixed.” I wrote about it and then of courseI’m getting but she was only beingkind andshe was only worried about you. I’m like,“If I needed help, I probably would have asked for help. I’m unable to talk. I don’t think that I’m unable to talk. I think I was even talking to someone before on the train.”

E:                     Oh my gosh, we did an episode on help.

K:                     The other thing too with assistance, if she said do you want one and you said no thank you and that was it. I mean, I imagine you wouldn’t have thought twice about it. Since she asked three times and insisted you must need one.

E:                     Yes, this is my problem with people offering help, is that,you are the rude one when you say no, thank you. When they insist, if you try to be a little bit firmer about saying no, then I mean it’s so frustrating.

C:                     Sometimes it happens online, but not as much in person. The other day I was on a TV show in Australia, called You Can’t Ask That, andI’ll send you the link so American people can hopefully watch it. It basically we get to talk back to all these questionsthat people ask. Anyway, I wrote about it for a publication that I usually write for. I wrote about how I have been in situations where my cleaner has been scared away and where something else happened. Someone laughed at my face anyway. I don’t think it’s my job to tell people how they need to behave around people that look different, but I just exemplified these things and said that this is how it makes me feel, and I can notice people’s reactions, a mile away anyway.

Someone on Twitter who had probably only read that article of mine took a screenshot of what I wrote and then ask this broader question about how they should react. I was quite busy that day that the day that the show aired, I had some media to do and I had some day job or freelancing stuff to do. I don’t know. I said, great question. Thanks. These are the things that I’ve written about previously that might help you. I sent three links to articles that I’d written. Then they kept on going and going and going and going. I ended up me; theytold me that I should give people instructions about how to handle people that look different. They kept on going, andI shared their tweet on my Facebook, andthen people took over the conversation for me, so I didn’t have to, which was great.

After the show, I’d noticed that they were still tweeting me even though I’d muted them and they said that if I had written about more broad issues than just myself, I would be more effective. I’m like, dude, I probably have written that one thing that you’ve read and that’s it, but I have written far more things that are broad issue than just myself.I write back to them and I said, by this time I was so exhausted because I’d had the day and I’d watch the show and, all these tweets and it trending topic and whatever. It was about midnight,andI said, “I’ve written so much around disability issues. Why disability issues? I’ve given you the information”I said; “Youcan justfuck off.” Like, I was so annoyed because I’d given themstuff. Anyway, so then someone tells me, “Look Carly, Iwasn’t shocked about your face. I was shocked aboutthe language that you’ve used.” That’s the shocking thing.

E:                     Because disabled people can ever use bad words, ever.

C:                     So that is as exasperating as been asked the questions the way we respond.

K:                     You give an inch they take a mile.

C:                     It’s really hard and really frustrating. I don’t know. Idon’t know what people want.

E:                     Neither do we,but that’s why we do this podcast in the hopes that maybe we are answering somebody’s questions somewhere. I had an instance where I was at a concert, and someone had laughed at my face. I was in the drinks queue, andthey justcouldn’t get past my face. I said, “You know, that’s a really rude response.” Then their friend defended her by saying that, “Well,because she’s never seen someone like me before of course, she’s going to laugh.” They were old enough to be my parents. They’re probablymid-50sto 60s a bit younger than my parents, maybe. Anyway, and after the show, I saw them. I was so angry.

                        I wrote this Facebook status, andI’ve got such a great response to it. Just amazing! I saw them after the show as we’re walking out. There would have been about 4000 people there, I reckon no, maybe not that many, but there was a, big crowd and I was walking out of the door as they were walking out the door and I tapped the woman on the shoulder I said, “Excuse me, I’m the woman whose face you laughed at before and that just wasn’t appropriate.I’ve been thinking about it all through the show.” Anyway, she didn’t speak at all. I think she was either embarrassed or not able to form sentences afterIconfronted her in a polite way. Then I was accused of stalking.

I was walking out in this big crowd with these people, and they’re like, Carly, they know my name obviously, they said no you’ve got it wrong. She didn’t laugh; shejustdidn’t know what to say.

E:                     How about nothing.

C:                     Then when I wrote about it on Facebook, I had someone say, look, I probably wouldn’t laugh at your face, but I’d feel sorry for you. So what do you want me to say? I said firstly, Ishouldn’t have to instruct you about how to behave around someone that looks different. Secondly, you’ve asked me this question after someone had just laughed at my face. Don’t you understand the emotional labor that’s involved in me talking about this further?

K:                     I might not want to answer this right now.

C:                     Oh my God.

K:                     That transcends disability, though. That’s like, basic human decency at that point. It’s like, it’s just, that’s absurd.

C:                     I think that disability kind of, I know that we shouldn’t give people teaching lessons, or maybe we shouldn’t be there, they’re teachable moments. I think people interacting with a disabled person shows what kind of person they are.

K:                     I agree with you 100%. It makes them come face to face with something that they don’t know. Period! In that,you can seehow they figure it out. They havenowhere to hide, so to speak.

C:                     I can tell you something that happened. I haven’t spoken about this because I’ve been trying to set boundaries about how much to reveal about someone else. I figure I’ve had enough distance now to do it and they probably won’t listen to this podcast, hopefully. Well, hopefully, they do really to realize the impact. I was at a blogging conference recently, not recently, nearly two years ago now. Emily, like when you blog her it’s free game to kind of take selfies and getsexcited. You’re, going from the online to in real life relationship.

E:                     I think that’s pretty much any big old networking event. I mean, goodness, Kyle and I were just at an event where we were taking selfies with anyone who would get nextto us.

C:                     I am so jealous. I was at a blogging event, I don’t want to sound conceited, but I guess I’m quite well knownin Australian writing circles. There were people that were quite excited to see me. There was a woman who I’d been online friends with for quite a while, andshe asked me if we could take a selfie. I said, yes, that’s fine. We took a selfie on her phone. I thinkI might have put that selfie on my blog after that she put it on Instagram. I must preface it by saying that I find that some bloggers, new bloggers especially, are very worried about statistics and when they’re going to earn their first million dollars.

They’re always watching how many followers they’ve got. I remember writing to her saying, it was so good to meet you.We had a lovely dinner with a groupof people. She was one of those people that I had dinner withand I clicked. Then about two days later, I reckoned I’d write to her to say, “Hey, it was really lovely to meet you in person.” She wrote back to say; “Oh my God, I’m so sorry.Look, don’t take this personally. I’ve taken the selfie of us down on Instagram because I’ve lost followers,” and I’m like, “Right!” So she told me-.

K:                     How is it notto take that personally?

C:                     She told me that it’s not my problem. It’s a problem about her and her self-image and blah, blah, blah, blah. She can’t handle losing some followers. Then I thought, look, I’m pretty proud of how I look, I’m okay with it. I’m not worried, whatever. Forher to tell me someone that looks different. Someone with a disability that my photo is the reason she’s lost followers, that she’s removing it. That’s huge.

E:                     That’s more than huge. That’s a shuttering thing to tell somebody I mean really.

K:                     Nonchalantly too, by the way.

E:                     Did she give you some kind ofproof, or wherepeoplemaking horrible comments I mean, not that there is any way to justify it.

C:                     There was nothing like that. Nothing so last year she wrote a piece on being authentic andI thought, what, I’m going to call her on this andI said, “Hey, so was it authentic that you decided to take down our photo because you’ve lost some followers? Like that wasn’t authentic.” She got really defensive and she didn’t want to know that truth. Like I said, I think it really shows what kind of person someone is.

E:                     I have so many problems with this.

C:                     Me too.

K:                     That could be–

E:                     I’m so angry withthat.

C:                     It’s really hard because no matter what I would say about how bad this looks, she defends it by saying she’s the one with the body image problem. That’s fair enough. Don’t take someone with a disability and a face with difference photo down because of your follower issue.

K:                     If you feel so shitty about it like if you know that you have such a shitty self-body image that that could pose a problem why’d you put it up in the first place. Oh my God.

E:                     That’s her body image problem, she shouldn’t be able to have a problem with some else’s body and call it her body image problem.

K:                     That’s why I don’t think I believe the person in the story, I think that’s an excuse.

C:                     It was awful. I want to write about it more. I’ve had these kind of experiences where people have been a bit embarrassed for me to be in their photo, or made a big deal about hanging out with me. When I get time I want to write about it more I am because I’ve had other people with my skin condition say similar where it’s really dissapointing.

E:                     I want to tell you something that I have neversaid out loud ever in my life. Thismade me think about it. I often think about how when my friend groups start getting married; Iwonder how many people might feel even if they don’t say it that my wheelchair is going to ruin their adorable bridal photos. Howthey take those cute wedding photos and post photos and everything? I always sit here and think to myself, my friends, accept all of me, they know the wheelchair is part of me, but how many of them are going not to wantthat ruining their perfect pictures?

I think the reason I’ve never said that out loud is probablybecause I’mnot really in a phase of my life where everyone is getting married yet. I definitely thought about that. I think that the people whose wedding parties I would be in if I meant enough to be in someone’s wedding party, that wouldn’t be an issue.

C:                     I know I haven’t been in anyone’s wedding party, butI have been to weddings. I think a few of them were before social media. I haven’t been to a wedding recently actually partfrom my own. I totally relate. There was a time at work in my day job it was about 10years ago now. 10years so there’s enough distance to talk about it. I think I don’t talk about day job stuff much. Someone was leaving, andI was like, left alone at my desk. I think I was on the phone and they all decided to go and have a group photo without me,and I was really angry. I said, “You know what, did you not want me in the photo?” And none of them could answer. Back then I wasn’t confident enough to even confront that.

E:                     I don’t think about this too much, but when I do, I really think about it I mean there was a time when I wanted my wheelchair to not be noticeable in photos you know so from the top up, butnow I could not care less at all. Still,it’s a thought that crosses my mind especially because people can be so vain about how certain things look.

C:                     Yes, I think especiallyin this social media age. I’ve seen a couple of people who are parents of kids with the ichthyosis, andthey’ve changed the filter on the photo or left it black and white, sotheir kid’s not as red. I wonder ifthat just their stylistic on Instagram or is it that they don’t want to show how red their kid is.Therewere some filters where I am less red on Instagram, andI have to make myself redder because I don’t feel like I look real. I don’t think I look me. I wonder about that. I had, not a friend, buta person I met at a blogging conference have him like catch up afterwardswe live near each other. After the meeting,she wrote on her public Facebook page, soher blog or Facebook page to say, “I hang out with Carly Findlay today and I didn’t even care when people were staring at her like I wasn’t embarrassed at all.”

E:                     What a hero, such a hero.

C:                     When I confronted her about that she didn’t see a problem.

K:                     You can lead a horse to water; there is only so much you can do about that.

C:                     She had a disability as well. I was so angry and I just it was disappointing to see that. I don’t want someone to feel good about hanging out with me like to feel charitable or not embarrassed. Fair enough, lots of people say they notice people staring but they don’t make it a big deal. They don’t make a Facebook status out of it.

K:                     That’s just making themselves feel better about being a good person.

E:                     [0:48:10 inaudible]pat yourselves on the back because you spent time with meif that’s the case I don’t want to spend time with you.

C:                     I’ve never spent time with them again. People say these things and it’s reallyit’s really bad. They don’t think about the impact.

E:                     I think that’s a pretty solid note for us to end on a sortof taking that wisdom away from that people need to think about the impact of what they do and say. Kyle and I we always do final takeaways at the end of our show.

C:                     Yes.

E:                     Wewould likeyour final takeaway before we give ours.

C:                     I think that silly things that are saidlike, have you been licking lollies? They kind of uplifting, you can you can take, humor from that, how can one beso silly. Sometimes it’s really good writing material as well. I’m not saying that I want these things to happen to me. If these things didn’t happen to me, I wouldn’t have all these articles.

E:                     It’s so true. This is so good for the podcast, we can talk about them.Kyle,what is your final takeaway?

K:                     Listening to all these stories justdon’t be a jerk. It’s not hard. It’s so not hard to be a good person. It’s so easy, that’s it that’s all I got.

E:                     Jumping off that my final takeaway is definitely if it’s hard for you to be a good person, or if you need to point out what a good person you are you’re not probably that great of a person. Stop doing that.

K:                     Also, it’s like that childhood say if you don’t have anything nice to say, don’t say nothing. That’s the other thing. It’s so easy not to talk to.It’s easier not to talk than talk.

C:                     Also,justsay hello. Don’t make the question about our disability or a comment about our appearance. The first thing that you say to us saying hello is really important.

E:                     Saying hi, before you justgo and blurt out some personal question.

C:                     Yes, I think that that makes a bit of difference. I don’t think it excuses it butI think that it’s better to say hi than not.

E:                     I mean, but out there like if someone was like, hi, what’s wrong with you? I probably wouldn’t go for that either.

C:                     No, definitely. Getting to talk to someone before you–

K:                     Ask them about their day first.

C:                     Yes.

K:                     Before you ask them what’s wrong with them.

E:                     How are you was your day? Why are you so messed up? Well, thank you. What a kind and considerate question. I appreciate your concern.

C:                     Absolutely, there was a bigvat of toffee applesauce,andI fell into it.

E:                     That’s a good story. Sometimes I want to tell people like I was actually, I don’t know violently attacked by–

K:                     I don’t know why you don’t lie to people Emily, I reallydon’t. I would lie to people every time.

E:                     I don’t have it [0:51:32 inaudible].

K:                     Make it up.

C:                     My husband’s just walked in on me saying there was a big vat of toffee applesauce and I fell into it, andhe couldn’t stop laughing.

E:                     That’s a good one.

K:                     You should use that.

C:                     I can’t do that on the spot. Like, I just I can’t it’s hard. I wish I had some like a button that I could press that justcomes out with recorded things.

E:                     I always come up with the best ones three hours later. Now, I justhave to know what is toffee applesauce? Is it apple sauce that tastes like toffee or is it apple flavored toffee?

C:                     No, when you make toffee apples, and then you put the toffee. I think it’s just toffee. Maybe not toffee applesauce may justred toffee.

K:                     Like a candy apple Emily as we would call it, I think.

E:                     Toffee that you put on the apple?

C:                     Yes.

K:                     Got you. I got it.

C:                     An Australian American translation that she did there.

E:                     You said something before you were like, I don’t know this person from a bar of soap.

K:                     That’s a good one. We don’t say that here, but that’s a really good one.

C:                     You could use that in Australian. I don’t think it’s Australian. I can’t think of other things that you might not know. No, I do know one. When we talk about thongs,you think about g strings but when we talk about thongs we talk about flip flops on your feet.

E:                     That I knew.

K:                     The first time somebody saaid how you go to me. I was like, “What? How am I?

C:                     Also, the fanny pack. Your fanny pack that’s our bum bag.

K:                     What?

E:                     Bum bag.

K:                     Wait. Do you wear it on the other side of you or?

C:                     Which way do you put a fanny pack?

K:                     We put it on our front.

C:                     Do you call a vaginaa fanny?

K:                     I know you guys do that’s why you guys think that that’s funny. A fanny is a butt.It’sa kid’s word, too.

C:                     I was never allowed to use that word at home, soI’ve never really grown up with it. I only say a bum bag. I haven’t worn a bum bag for years probably, since I was about eight, soI can’t I can’t tell you about that fashionable thing, butapparently they’re in. Currently, they’re in.

E:                     Are they? Because I haven’thad one since I had this tiny little mermaid one when I was small.

K:                     That’sexactlywhat they are.

E:                     I have a picture of Kyle who’s squeezed a child [0:54:24 Inaudible]bum bag/fanny pack on him.

K:                     Good, we’ll just put that in the show next time.

C:                     Cool.

E:                     Carly, do you have a photo of you with a bum bag/ fanny pack, andI’ll get one of me, andI’ll juststart a trend.

C:                     I don’t. I’m sorry. I will send you a photo of me as a kid justto make you laugh, okay.

E:                     Okay.

K:                     All right.

C:                     I’ll also send you the details about the you can’t ask that..

E:                     We want to put that on the show notes. On that note,we would like to thank you for crossing the time divide long enough to be on the show with us today.

K:                     Thank you very much.

C:                     It’stomorrow.

K:                     How is the future? Do you have flying cars?

C:                     Thereisno flying cars yet, there’s nothing here in Australia technology wise that you wouldn’t have in America. So today, but tomorrow, there might be, I don’t know.

E:                     You never know, but you’realways living in the future and that’s pretty legit.

K:                     Its similar weather to where you are right now.

C:                     What temperature is it?

K:                     It’s 60 degrees it’sFahrenheit here, which inthe real temperature scale is 18 degrees.

C:                     Yes, we are about the same temperature. It’scoming to winter now.

K:                     That’s right. I always forget that.

E:                     Its summer for us.

C:                     One of the questions from an American blog her was,if you are in Australia and December is summer. Do you celebrate Christmas in June?

E:                     Oh boy!

K:                     I had an Australian friend. I was a very ignorant American. Just before we go, Ihad an Australian friend I was like, “Leo, do your Christmas cards have like Santa Claus in like shorts on him?” Heis like, “Yes.” I was like, “Can I have one?” He sent me one and it’slike the greatest.

C:                     We do. We have very Aussie. Like, [0:56:34 inaudible]would play Santa, I guess.

E:                     Now, I have an ignorant American question before we go. My uncle likesto tell me that your toilets flush in the other direction from ours is that true?

C:                     Yes, it’s to do with the hemisphere.

E:                     That’s what I thought. Sometimes he justdoes things andI don’t believe him. I feel like toilets flushing in opposite directionsis weird to me.

C:                     American toilets are weird they justgo woof and then you never have to brush them, they just self clean it’s amazing.

E:                     Yes, I wouldn’t say that.

K:                     I didn’t know we had such differences in our toilet technology.

C:                     I have stayed in people’s houses in America, but hotel toilets are amazing in America.

K:                     You’re right about that. You’re definitely right about that. We stayed at some hotel after our Airbnb thing fell through and the toilet overflowed in the room and then they were going to upgrade us butthen we had all of our stuffing everywhere like in the in the closet, on the carpet. We were justlike no it’s all right you can justclean it up and then we’ll stay in our room,it’s fine. That’s a lovely note to end on.

E:                     Toilets everyone.

K:                     Best invention ever.

E:                     Thanks for listening.

C:                     All right bye.

E:                     Bye.

K:                     Bye.

E:                     That was fun.