Crip Café: How to fend off unsolicited (ableist) comments

Olivia:  Kia ora and welcome to Crip Café, your fortnightly live podcast where we figure out how to be disabled together in Aotearoa.  I'm your host Olivia Shivas and we are joined by guest host Ella Sargison.  Welcome.  

Ella:  Kia ora Olivia, welcome back to Crip Café.  My name is Ella, I'm the Community Hub Manager here at The D*List and I'm very excited to be joining you for Crip Café.  Yeah, very exciting.  We've got a few housekeeping, I think we've got a new caption streaming service with our friend Katherine, so that's great.  Comment if you're having a good time with the captions.  

Olivia:  Yeah give us any feedback, last time we had some technical issues, so we've found a solution which has been really amazing.  So how's the week been?  

Ella:  It's been good, been busy, but looking forward to a bit of a long weekend, which will be nice.  But it has been good. 

Olivia:  Yeah we had our Matariki market last weekend so thanks to everyone who came along.  What did we do?  

Ella:  We had lovely hāngī, we had lots of stalls, we had our waiata sessions and bead making.  It was beautiful, it was windy but it was a good day. 

Olivia:  The sun was out which made a huge difference.  It was really awesome to see lots of cool people there.  

Ella:  Yeah thank you for coming. 

Olivia:  So, how's your week been? If you're watching this live, put an emoji in the chat, let us know, we have people in the comments and we'll show them on screen as they come up.  For the theme of this episode, we have chosen quite a fun topic, and it is how to fend off unsolicited ableist comments.  So before we head into the new section, type in the comments if you've got any funny stories or comments that you hear all the time, that you're really sick of, and we've got a bit of a list between us and how to respond to them as well. 

So, coming up to our new section, you would have probably seen a lot on social media there's been a lot of chatter around the Disability Support Services Bill or the DSS Bill, last week across the motu there was protests, one in Tâmaki Makaurau then another one of people handing a petition over to parliament [Te Whanganui-ā-Tara], so big shout out to all the people who were at those protests with their placards, and yelling chants, I think one of my favourite once was hey-ho hey-ho the DSS bill has got to go.  It was really cool to see so many people come together.  The petition opposing the bill had over 16,000 signatures and at that event Labour's disability Minister, no disability issues spokesperson Priyanca Radhakrishnan says the party will bin the DSS bill if they get into power at the next election.  Yeah, we watched quite a few of the submissions, they were quite powerful weren't they. 

Ella:  Yeah, I really enjoyed watching them, I feel like there was such a range of people giving submissions and it was really lovely, but it was also very sad, but it was also good so many people spent time to write.

Olivia:  The collective of people, disabled people themselves, their parents, whānau, carers, disability organisations, it's unfortunate we have to come together over this, but at least it's cool to see some unity. 

Olivia:  Another thing that's happened recently is that Sailability Tauranga has celebrated 10 years of sailing for disabled people.  They've had over 30 volunteers and delivered over 1,000 sailing experiences taking to the water each day, and that's quite cool.  I used to do Sailability when I was younger. 

Ella:  Did you? Jumped in a sailboat?

Olivia:  Yeah, I remember I was really nervous the first time but I remember that I think the boats are not impossible, but they make it very, very difficult to flip, by the way they're designed.  I think knowing that helped me, because I did not want to capsize. 

Ella:  How old were you? 

Olivia:  I was probably a kid, like probably too young, maybe like 12 I went off by myself. 

Ella:  Like no-one else in the boat?

Olivia:  Yeah, they threw me into a boat and I just winged.  It was fun.  How about you, have you done sailing?  

Ella:  I did sailing at camp, it was a school camp, I was quite scared but I don't think I've done any other disabled sports -- I've done sports as a disabled person, but not disabled sports. 

Olivia:  Yeah.  Cool, okay, we have Red, he's put his hand up to jump in. He's our producer, you can't see him on screen but his voice will magically appear. 

Red:  Kia ora I am jumping in speaking of news, there a bit of breaking news in this afternoon. In my email inbox I got an email from the office of Jennie Marcroft, New Zealand First MP who is reigniting the Accessibility for New Zealanders Bill. 

Olivia:  Wow!

Red:  Yeah, There's a members' bill she's going to put in the biscuit tin which is really reigniting the conversation about setting minimum enforceable standards, on the surface sounds like a great thing, although New Zealand First is also nominated Michael Laws, I think, as a candidate for this election, who notoriously had said some horrific things about disabled people over the years.  So torn about what this means for us.  Obviously early days, hot off the press.  But interesting that the conversation around this bill lives on and thank goodness.  So you know, shout out to Jennie Marcroft. 

Olivia:  Yeah putting it back on the radar. 

Ella:  Thanks for the breaking news Red. 

Olivia:  Cool, so do we have any interesting comments?  Are we going to keep an eye on comments?  We're going to keep moving along,so yeah, please let us know.  So yeah, the topic is fending off unsolicited ableist comments.  So you could put the ableist comments in the comments if you want to, I feel like we're going to be saying comments a lot in the next 45 minutes.  Before we kind of do a deep dive into that section, we have a little tiny segment called non-disabled nonsense of the week.  This is a part of the episode where we share a little funny story or anecdote that we've shared maybe around the office and we just have a little laugh, not at the expense of non-disabled people, because I think they mean well.

Ella:  Well.... 

Olivia:  But you know, trying to make light of some of the funny and awkward situations we get into.  I think a comment that I've had recently, which again, I think people mean well, is that I'm getting married in January.  

Ella:  Yay Olivia. 

Olivia:  Which is very exciting, I've had a few people ask me if I'm going to decorate my wheelchair.  I want to be the centre of attention, not my wheelchair.  

Ella:  Paint it white or something. 

Olivia:  I think I have seen some disabled influencers put fake flowers around them or, like, I don't know.  I'm going to actually ask Red, so if Joegen wants to prep Red's mic, I want to ask you, did you decorate your wheelchair when you got married?  

Red:  I feel like there is some really interesting differences in gendered expectations of wheelchair users and weddings.  I'm not familiar with decorating the wheelchair for a wedding aesthetic.  What do you think people are expecting you will do?  A train?  

Olivia:  No, that's definitely not practical. Cause I'm running over that and it's going to rip straight away.  

Red:  Oh the ‘just married’ cans.  

Olivia:  Like walking down the aisle, no afterwards I'll come into the office with the cans.  

Red:  I think the really common wheelchair question around weddings is are you going to walk down the aisle.  

Olivia:  Yeah. 

Red:  I don't know if you want to touch on that, but that's interesting, that's certainly a thing. 

Olivia:  Yeah, I think maybe when I was younger that was something that I thought maybe I would do, but like now that I'm older, I'm actually marrying Gareth and he's known me as a wheelchair user, it would feel weird if I walked down the aisle.  So I've already told him to not expect that. 

Red:  You'd be like I don't like this. 

Ella:  You've got to do what's comfortable for you, not someone else's you know. 

Olivia:  Yes you see those inspirational important individuals of brides that spend months learning to walk and everyone cries, like I don't want to do that, I have no time to do that as well, it sounds really tiring. 

Red:  We don't want to yuck people's yums, if that's your thing 100% all good. 

Olivia:  I think because maybe people who have an accident later in life that's something they want to do and for them, it's really important, but to me that's not something that's important to me. 

Red:  I think that's a really important distinction, the difference between losing function versus like you say, Gareth has always known you as a wheelchair user, so you don't want to start switching things up now. 

Olivia:  He’d be very confused.  How about you Ella, do you have a non-disabled nonsense part of the week?  

Ella:  I've got so many stories. I do have a story for you, a few weeks ago I was walking my dog in the park and there were some children around and I feel like I get the most comments from children, but they're the most exciting ones because they're so innocent and things like that.  But I was walking the dog and there were these two children probably like 8 or 9 or something like that, and one of them was like “look at that lady, she's so short” and I've heard that many, many times.  And then the other kid that they were with, what did they say?  They were like “she is allowed.”  I was like, I hadn't heard that one before, so I was just like yeah, I am allowed actually, thank you, thank you for the recognition.  So that was like a lovely one, because you know, it's harmless, they don't know, but that was a good one I thought.  

Olivia:  Yeah, that transitions quite well from the harmless comments to the unsolicited ableist comments.  I mean some of them are like we may consider ableist but some of them are probably more like misinformed or unintentionally, you know, misguided.  

Ella:  Yeah, I mean some of them are, you know, nasty, but I think a lot of the time it's, yeah, it's just curious, or you know, things like that. 

Olivia:  Before we head into this deep dive we would like to propose these questions to the audience, so share your unsolicited comment stories, and how do you normally respond?  Crip Cafe is about figuring out how to do this disabled experience together, so we'd love some of your suggestions on how to respond to some of these comments.  So now, heading into the deep dive, what are some classic comments, should I start?  

Ella:  Yeah, what's your average comment that gets yelled at you?  

Olivia:  Yeah, so I guess as a wheelchair -- I think there's also a different experience when you're disabled.  If you've got a visible disability you're short statured, I use a wheelchair, we probably hear quite a lot.  Kind of on my list of the classics, because I grew up in church as well so one I would get a lot is can I pray for you.  It's hard to know, like, again, I like to think people mean well, when they ask this.  So whether they, like, pray for healing or that you can walk or, I know my parents have had comments like, oh you don't have enough faith, that's why she's in a wheelchair, like that's a tough one.  

Ella:  Yeah. 

Olivia:  So I think anything related to religion or faith is probably like -- I mean you could categorise it as a little bit of ableism, because it's kind of like the background is you should be able to walk, like that's the best way to physically be.  Whereas I guess your life will be better if you could walk, whereas I guess our experience is like we live fine and well with our disability and impairments.

Ella:  Yeah. It's pity isn't it. 

Olivia:  Yeah, yeah, and like charity, probably enough one you were saying with kids, I feel like comments from kids are not necessarily ableist, they're just innocent and curious. 

Ella:  Yeah they've just never seen someone before.  

Olivia:  Yeah you'll overhear someone in the supermarket saying why is she in a wheelchair?

Ella:  Look at that little mom, something like that, actually I used to not like it when I was younger because I used to be like, when I was 21 or 22 I’d be like, I'm not a mum, but they don't know.

Olivia:  I used to think the same when I was a teenager, they're like “look at that lady”, I'm not a lady.  Why are we putting accents on for the kids, I don't know why.  Yeah, so we have a comment from Soph and they've said one of the most frequent for me is, you don't look disabled. 

Ella:  That's the other side of it right, we are very visibly disabled, some people are not. 

Olivia:  Yeah. 

Ella:  So that must be quite hard if someone says that, because where do you kind of fit in and do you have to explain yourself. 

Olivia:  Yeah, yeah, and I guess like where the tricky point is. It's like this weird situation because I guess if you don't look physically disabled then when you ask for accommodations there may be a bit of unease or uncertainty.  But often when you do look physically disabled you probably get a lot more assumptions. 

Ella:  Yeah. 

Olivia:  Around what you may need, and in a way maybe it's a bit easier to explain, because you can use it as a reason to have accommodations. 

Ella:  Just looking at a comment there from Von, similar to Soph, no you're just normal.  What is normal Olivia?  

Olivia:  I don't know what normal is. 

Ella:  Let's ask the deep questions today.  Yeah, I feel like that's not okay.   We've got another one. 

Olivia:  Is this from Elise, on the plane last week I was wearing my D*List hoodie and someone asked if I was borrowing it from my boyfriend.  Our D*List Merch, I'm going to assume maybe it's the one that says disabled on the back.   Yeah so thinking about  what it looks like to be disabled, there's no, like, a pure definition, you know?  So I think that's one of the reasons we liked having the word disabled on our merch because it reframed the different ways it can look in our communities.  

Ella:  I can imagine people like for example I'm thinking if you've got a mobility permit I can imagine people that aren't physically disabled getting a lot of comments like why do you have that or something like that. 

Olivia:  Or look like they're physically disabled.

Ella:  Yeah, you don't look like you need that, so that's a bit unfortunate. 

Olivia:  I know people who will walk with an emphasised limp in that situation so they don't get comments like that, which is so not cool.  Seeing it should be enough to be like, yeah, they're there for a reason.  

Ella:  Also mind your business.

Olivia:  We have another comment from Joanna.  Oh yeah, I relate to those Olivia, people are well intentioned but the implications are rough.  So I think that might be with reference to kind of like growing up in church and having those kinds of comments as well.  One of the things we're going to talk about in this episode is like responses, how do we respond as disabled people.  I think when I was younger I really used to hate people saying stuff like that and I'd get really upset because again it was like a reminder that society thought there was something wrong with me or something that needed fixing.  But then on the other hand I think as I got maybe a bit more confident in my disability identity and being okay with being disabled, and pushing against those, like, yeah, ableist thoughts and comments, I would start to push back a bit and be like well why, do you think I need prayer, I actually, do you want me to pray for you and people would be quite surprised because they'll realise like, not saying they're quite the absurdity but maybe the realisation like what I want prayer for might not be as obvious and everyone may hope and wish for something.  Yes, Red has his hand up.  

Red:  I'm wondering, one of the things that I think about when people ask those intrusive questions, or make those intrusive comments, is that I feel like sitting behind it is just this really human desire to connect and understand.  And know what's going on, like feel less worried or afraid or nervous or unsure, it's like this really human desire to connect.  But then it puts a lot of burden on the recipient of that connection request to make that person feel comfortable, to honour that request, to you know, this isn't specific to disability communities either, I know lots of people who might be visibly, you know, different from the norm or whatever struggle with this, how much labour do I have to put in to make this person feel comfortable. 

Olivia:  Yeah, yeah. 

Red:  I'm wondering about how you two deal with that when you say it's coming from a good place or coming from a place of, like, wanting to understand.  But sometimes at 7 o'clock on a Wednesday and you just want to get your groceries in the car and actually, I don't have time for this right now, like how do you two manage that?

 Ella:  I think I'm all about education, and I think a lot of the time it comes from well, maybe not a lot of the time, most of the time it comes from a good place, or a curious place. But then sometimes I think if you're that person asking that silly question or that really private question, I think you have to kind of pause and be like do I really need to know this right now, does this person look busy, do they look like they've had a day, because I mean like another thing is, and this is connected to the other communities as well, not just disabled communities, that person might have had that comment or that question like five times that week, so you're kind of coming into it thinking oh it's just a little question, I just want to know how you reach this.  But at the end of the day, like that person is probably like oh my gosh here we go again.  So it's not really your job to educate people I would say.  But sometimes there is a point -- there is a time to educate I think, but other times it's okay to be like oh sorry I'm just going about my day, see you soon, you know, not soon, but, see you later. 

Olivia:  Yeah, yeah I think again it kind of depends on my energy levels and context as well.  Sometimes I'll kind of be like oh no, I'm all good, try to move things along, I'll leave you to it and try gently push people away.  But if I am feeling particularly generous and like you said Red, feel like doing some free labour, maybe someone is for example a can I pray for you situation, can seem like quite, I don't know passionate or this is very Christian term, have a Hart for disabled people, here's another organisation you could actually like volunteer at, or you know, direct their energy into something that might be more practical rather than randomly praying for a stranger on the street.  

Yeah, my strategy is redirecting it in a kind way, but obviously not everyone has the energy or, like you said, some people are so tired they've heard it five times that day.  And I think if you feel like being like no thanks and just move on and ignore, then you should feel comfortable doing that. 

Ella:  For sure.  I think this is perhaps more specific to my disability, a lot of the time comments are said for a reaction maybe.  So I think for me not giving them the reaction they are looking for perhaps is to just kind of keep walking or kind of keep moving.

Olivia:  How about you, what kind of comments do you think, you mentioned some of the kids. 

Ella:  Some of the kids, they definitely say different things.  I think for me it's actually really interesting when the parents react, when a kid says something, so like if a kid will yell something out, it's often the parents that are embarrassed or they pretend nothing happened or they'll tell the kid off, I'm like don't tell your child off then they're going to be scared of me.  But there's heaps of different types of reactions.  

Olivia:  Yeah for sure.  You've got a little activity and some props. 

Ella:  I have actually been wondering if it's the right time.  I've got some random responses that someone might say to a comment or some unsolicited advice perhaps.  I'm going to show the comment and I would like you to react and tell us if this is the way you would respond to the comment?

Olivia:  Yeah. 

Ella:  I'll share it with the audience too.  So the first one is, it's none of your business.  Would you say that Olivia?  

Olivia:  It kind of depends on the mood I'm in, like I said, I mean if someone came up to me and said for example what happened? I’d be like it's none of your business?

Ella:  Yeah if someone said how did you get in that chair and you said it's none of your business, maybe not in that voice, I just like to act. 

Olivia:  Make it dramatic. 

Ella:  Yeah what do you reckon?  

Olivia:  What would I say, again it depends on the context.  Like if they look like a mean rude person, maybe I would say that. 

Ella:  That's okay. 

Olivia:  But I'm trying to say like yeah if it's a kid, I probably would -- if it's a kid, I'd usually be my legs don't work properly so I use a wheelchair to get around, but I can do everything, like I need to explain that I'm still very capable person.  But maybe it's none of your business, for me personally, I guess I'm quite a soft person, so maybe that's a bit too harsh for me. 

Ella:  If you would like to say that to someone, please comment below.  Next we've kind of touched on this one, we've got to educate them.  So maybe someone asks a question or says something that's slightly an incorrect term, would you educate them?  

Olivia:  Yeah, I think it's interesting, because it all comes down to context, like once I've known someone for a while and maybe it comes up naturally in conversation what my disability is or what happened and that type of thing, I probably would share it in a way that felt comfortable to me.  But if it was like, often actually some things that people are interested in is like Red mentioned before, is like in the supermarket carpark, people are very interested in my car. 

Ella:  Modifications, yeah. 

Olivia:  Yeah modifications.  So I think people just haven't seen a car like mine where I've got a remote that opens the back door and the ramp and people are like wow that's so cool.  So I get a lot of comments around that.  Again, these aren't really unsolicited comments, I think people are genuinely curious about new technology and stuff, and also to do with my wheelchair because I've got power assist wheels and they light up, and people are like cool they light up.  And often there's a certain demographic I would describe as older men who are probably engineers who come out and comment on my wheelchair and so I'd be happy to give them a demo. I think like for me I don't mind showing how cool technology is because it's kind of also the technology and stuff I use is an enabler I guess for me, I think that's a cool thing to showcase in terms of it not being about what happened to you, it's more like oh cool you've got this cool piece of equipment that enables you to live a full live with a disability.  So if it's related to that I'm happy to educate people. If I was really busy and didn't have time I'd go on my way. 

Ella:  I think that's good.  I feel like for me, I’m often educating people about terms to use sometimes as well, so if someone yells out hey look at that dwarf I'm like hey my name's Ella, like relax.  But just educating them about language to use.  I wonder if people that perhaps don't have a physical disability like to kind of educate a little bit about what it means to have that, or what it means to not look like disabled.  So perhaps that's kind of something that they can educate, if they're in the mood though of course. 

Olivia:  Yeah, yeah.  

Ella:  Oh, am I allowed to swear on this?  Swearing? 

Olivia:  Yeah

Ella:  Get fucked: That's a, well, what do you think of that one?  

Olivia:  If I won't say none of your business, I probably won't say that.  Have you used that one before?  

Ella:  I haven't, but I've been very close I think.

Olivia:  Yeah, yeah. 

Ella:  I think maybe similar to how I spoke about reactions I think sometimes, giving a reaction, encourages people to say more perhaps.  But if you want to say that to someone, you have our approval.  The next one, okay this one is a snarky kind of tone.  Thank you so much. Maybe this is like if someone gives you some unsolicited advice, someone says like oh, have you tried drinking peppermint tea to helpful, thank you so much.  But no.  

Olivia:  I mean I'm trying to think. 

Ella:  It can just be a yes, or a no. 

Olivia:  Yeah, I'm trying to think when do I need to thank members of the public.  Maybe if I'm going to like the supermarket and I'm trying to reach someone and someone's like let me help you, I don't know I'm just polite.  

Ella:  Of course you say thank you.  

Olivia:  Thank you so much. 

Ella:  Next one is that's really appropriate. 

Olivia:  I have actually, I think I have. 

Ella:  Me too. 

Olivia:  Yeah I have used that.  I think that's a good one. 

Ella: When?

Olivia: Probably in my early dating years when people would want to ask me on dates or, like, on dating apps and stuff like that, I'd be like I don't usually share that with people at this stage.  

Ella:  Yeah, I think it's good to say that, it's good for people to know even if they probably should already know that a question is inappropriate, it's good to remind them like oh would you ask someone else about this?  

Olivia:  Yeah.  One of my favourite responses, when people would ask me on dating apps was why are you in a wheelchair.  I saw this joke online, but it said I subscribe for a seven day free trial and then I forgot to unsubscribe to.

Ella:  Wait, I don't understand.

Olivia:  Like I subscribed to a seven day free trial to use a wheelchair, and then I forgot to unsubscribe.  Some people were very confused but some people got it, which is a good sign.  Okay, so we have a comment from Soph.  “I reckon when people say I don't look disabled, if I'm feeling brave enough I'll say that's not a compliment.”  Yeah, it's like a backhanded comment.

Ella:  No you don't look disabled like they say, yeah. 

Olivia:  It's almost like patronising and they want to minimise us disabled people. For some people it's something we're proud of in our identity and the community that comes along with it.  So minimising it could be offensive. 

Ella:  Yeah could be.  There's some people that don't like the word disabled, maybe that's okay, but if you are disabled and you're proud of being disabled, say no, I'm disabled, you're allowed to say it. 

Olivia:  Any more responses. 

Ella:  I'll show the audience first.  Smile and nod through the pain.  The pain is in terms of like oh this conversation's going to be a long one. 

Olivia:  I've done that before, yeah. 

Ella:  Here we go, here comes someone with their interesting comments.  Yeah sometimes you have to.  I think sometimes when it's perhaps older people that are maybe more innocent and you're just like oh, yes, hello, you know, smile and nod.  Then the last one, which I quite like, is leave while they're talking.  Maybe that's an alternative to the swear word, just leave. 

Olivia:  Yeah, just remove yourself from the, well, the conversation or the situation.  

Ella:  Yeah, I think you're allowed to, if someone's making you uncomfortable, well, see ya.

 Olivia:  Yeah, fair.  

Ella:  That was all the response that I have for you.  Do you have any extras that I missed out on that you've heard before or used before?  

Olivia:  I think we’ve covered all the common ones I have.  I mean have your responses to people changed over time?  Say like when you were younger compared to now as an adult?  

Ella:  Yeah probably.  I mean I'm in my early 30s now, so maybe.  I think when I was younger, definitely, because I get stared at a lot because I'm very beautiful, but I think when I was younger I really, really didn't like the stares or comments like that.  So I'd kind of not say anything, or shrink myself down or, you know, things like that.  But I think as I have gotten older, it's definitely less about me, it's more about the person making the comment, right.  And as you get older with any situation you kind of start to understand that.  So I wouldn't say my responses maybe have changed, but I'm more understanding of like oh yeah, I've heard this one before, this is how I'll react or I'll say this or I'll tell them about this, you know, that kind of thing. What about you?

Olivia:  Yeah maybe when I was younger I was a little bit shy and insecure like many young teenage girls are, but as I've kind of grown more confident and things like that, I'm happy to push back against people and keep moving along and not be such a people pleaser to kind of like appease their curiosity, like I don't need to be doing that any more.  

Ella:  Yeah.  Just because it's uncomfortable, yeah, absolutely. 

Olivia:  Yeah for sure, yeah.  I mean and in terms of like the types of comments, do you think for you like they've changed over time or are they the same?  

Ella:  That's really interesting.  I actually think because of social media and, yeah, without getting into it too deep, I think that things have changed.  I feel like people maybe have seen other short statured people in movies or TV shows and they're like have you watched this show, or do you know this person, I'm like no of course I don't.  But I think comments around social media have perhaps changed a little bit. 

Olivia:  Yeah, there's more representation, but it also means. 

Ella:  Not always good. 

Olivia:  I was about to say, there's an increase in good representation and an increase in bad representation. 

Ella:  Yeah, I think people think because they've seen someone that looks like you or me or anyone, they can kind of have that right to be like oh yeah, I know about you people.  

Olivia:  Yeah, yeah Red's got his hand up. 

Red:  Can I just say my comments have dried up entirely as I've gotten older.  10, 20 years ago people were like it's so great to see you out you're doing a great job, it was so affirming.  These days no one says anything.  As I've gotten older and balder, people have clocked me and been like yeah, that makes sense.  Yeah, a wheelchair, makes sense.  So anyone out there who sees me. 

Ella:  So less comments the older you get. 

Red: Yeah,  I feel like my rogue remarks have just completely evaporated. 

Ella:  It's definitely they've gone or you don't notice them any more or you don't hear them as much?

 Red:  Probably like I'm in less interesting places.  Most of my life is spent at west city mall for example so I'm less likely to be at places that people don't expect to see a disabled people. 

Olivia:  You see a lot of people at the mall, people spend a lot of time there because they're so accessible. 

Red:  Yeah no one is surprised to see a wheelchair user at the mall, but yea certainly I feel like the remarks that I used to get just don't happen any more but that's probably more of a me problem. 

Ella:  Because you're not in the clubs. 

Olivia:  Bar101 being like “How did you get in here?”

Ella:  Yeah interesting.  I think things change over time, yeah. 

Olivia:  Yeah for sure, I've thought of another comment that's quite funny.  I think as a unifying disabled experience, do you know this person?  Do you get that as well?  

Ella:  All the time.  People think I'm someone else, I'm like I don't even look like them.  I'm sure you get it too. 

Olivia:  Yeah, I've definitely been mixed up for other disabled people in wheelchairs.  When I was younger it was a bit like no, now it's like I actually do know them. 

Ella:  That's the hardest bit, you'll be like here we go and they'll be like I went to school with someone like you or, I don't know if -- they go, I went they went I went to school can someone like you, I'm like come on, I'm like what's their name, so and so, I'm like yeah, I do know them, they live in the South Island now. We don't all look the same, and that was my sister, she was at that meeting. 

Olivia:  Yeah, yeah.  Cool so now we've just been given the sign we're going to start to head into our disability dilemma section.  

Ella:  Yes, so we've got some, I guess this is kind of like an agony aunt kind of, asking questions section. 

Olivia:  Yes, yeah, so we asked people on Instagram for some dilemmas.  We got a few, we don't have time to go through them all, but the one situation is, I hate seeing new professionals, I'm going to assume it's medical professionals, because they side eye my long list of medications.  

Ella:  Yeah, that's tricky isn't it.  I feel like it's always a bit hard going into new situations having to re-explain or re-define things. 

Olivia:  Yeah.

Ella:  Maybe you're like here we go I need to explain this again or I need to let them know about this and maybe if you feel like you've done so many times it can be a bit like don't they know, don't they have it on my file, you know, so that would be really hard, yeah. 

Olivia:  Yeah, I guess you would hope that a good doctor, medical professional, prior to having the appointment, would read your notes again so then they are well-informed and can practice the best they can in that situation.  And again, you're not having to start from scratch for that type of thing.  I guess in these kind of situations if I've ever felt a bit like, I don't know, unfairly treated or something doesn't feel quite right in a medical appointment, like in some situations when I have an appointment they send through like a feedback form, I've often filled in something that if something has happened that didn't sit right with me or I didn't feel fairly treated or whatever I will be honest in that feedback form. 

Ella:  Let them know, yeah. 

Olivia:  Yeah, and also good on for you for being so organised with your long list of medications, I probably need to update mine at some point. Soph has a comment In a similar vein going somewhere and they ask do you have any health conditions?  And you have to decide how many to tell them about.  Yeah. 

Ella:  Like what's are the needs right now, do they need to know this, what are they asking for. 

Olivia:  Yes, yeah what's the relevance, what's helpful to offer in that situation for sure, yeah.  Okay, we probably only have time for one more, which one shall we do?  Shall we do both?  We can fit both, okay.  So the next one is, people coming into work sick because they've got no sick leave left and you're immunocompromised then you catch your bugs then you're off work for longer because you struggle to get rid of it. 

Ella:  Yeah, that's not fair.  What's the answer to that one, more sick leave maybe, I don't know.  

Olivia:  Trust people regarding sick leave.  But I guess it is tricky when you're the employee and obviously not every workplace is as accommodating for things like that.  I guess depending on the situation you could ask your manager if maybe throughout winter or seasons when more people are sick around the office you could ask to take more working from home days potentially. 

Ella:  If you're in the workplace that you can for sure. 

Olivia:  Obviously not everyone has the ability to do that in their job.  But hopefully workplaces can be accommodating for that. 

Ella:  Yeah, definitely. 

Olivia:  I mean also like, you know, if you feel comfortable or if you want to just wear a mask around the office.  You know, we always have a good stash of masks around The D*List office, and things like that.  

Red: I've just seen in Germany they've announced a policy  where you have to bring a sick note from the doctor on day one of sick leave. So you can only be sick now in Germany if you bring a doctor's note.  I don't know if that's like passed or a proposal I saw it fleetingly on the telegraph website.  But it must be terrible for disabled people.  

Ella: Yeah, are they doing that because they think people are taking the mickey. 

Red: People are taking too much sick leave, Germany's productivity is dropping because people are taking too much sick leave.  There's news articles floating around locally which are saying the same, people are taking more sick leave then they used to.  So it's not out of the question, depending who our next government is  that they might want to consider something similar, it's terrible.  

Ella:  I don't think that would be great at all, not even our community. 

Olivia:  General well-being. 

Ella:  Yeah, who's going just to get a certificate?  If my nose is runny, it's runny, I don't need a doctor to tell me that.

Olivia:  In terms of health equity and stuff, going to a doctor, getting an appointment, sometimes getting an appointment with your GP can take days for some people and also like the cost, so yeah, that's not cool.  But yes, for this person, really sorry that you are really sick. Just, I mean when I'm sick, try to stay cosy at home, look after yourself and make sure you're well enough. Yeah, see if you can take a few working from home days and hopefully if you've got a good manager, a good manager will be open to having a conversation about that.

Ella: They might not even be aware of it, it might be that they're not considering it. 

Olivia:  Yeah, yeah.  Our last disability dilemma we have. 

Ella:  How to be nice to people who moan at you a chronically ill person about their minor ailments.  Okay.  So someone is getting moaned at, maybe they're like complaining you're always this or you're always that perhaps?  

Olivia:  Maybe they're kind of complaining about their own, what this person is describing as a minor ailment. I'm trying to come up with a relatable experience.  For me as a wheelchair user, if someone comes up to me and is like oh I broke my ankle for two weeks and was on crutches, I know what it's like being disabled. 

Ella:  Yeah, yeah. 

Olivia:  Yeah, we have Soph now who's going to jump on the mic.

Soph:  I'm representing the whole chronically ill community.  Hello. So I have ME/CFS and a major symptom of that is fatigue, so I will say to someone I'm tired or I'm fatigued and they're like me too, they're like oh, I didn't sleep very well last night and I'm like yeah, and that sucks for you, and that's quite different to what I'm talking about.  So I think sometimes also it's like maybe a misunderstanding of your experience in -- and also maybe being charitable it's them trying to be like I get you.  

Ella:  Yeah how do you gently explain to them it's not the same though. 

Soph: It depend how welI know the person, whether I'm going to even try.  But I have had this conversation with someone I'm close to before where I'm like I totally appreciate that you're feeling bad, and we can both be feeling bad in a way that is like on our own terms that's quite bad.  But I don't want to compare experiences. 

Ella:  Yeah, yeah. 

Soph:  Them feeling bad might be an 8 out of 10 bad for them, so I am not going to be like your tiredness is not valid, but also let's just accept that our experiences are different. 

Ella:  That's so good, yeah.  And that's what you've got to do is accept that not everyone's going to feel the same way and have different kind of levels of pain or tiredness. 

Olivia:  For sure.  Cool, well, thanks Soph.  I think that heads towards the end of our episode, thanks for being a great guest Ella, how's that?

 Ella:  Thank you, I was so nervous but it was just like we were having a cup of tea and chatting, like I forgot the camera's were even there, that was good. 

Olivia:  Yeah so good.  Well we will wrap up the episode, thank you so much everyone for watching Crip Café.  We hope you have a wonderful restful Matariki weekend, we're going to take a few extra days off at The D*List as well just to fill our cups, replenish our spoons and we will catch you in another two weeks. 

Ella:  Yes, Mānawatia a Matariki.