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- [00:16]
A
I, I really want to talk about how to be around disabled people. What the rules are for etiquette, kind of best practice, what not to say.
- [00:30]
B
I feel like people would appreciate that.
- [00:32]
A
Yeah. And also maybe per chance for disabled people to send to a loved one and be like, hey, FYI, here's some information you might want to have.
- [00:43]
B
Well, all right.
- [00:44]
A
I'll start by saying that I'm coming at this with a perspective of someone who was able bodied for over 40 years pretty much, and then became a hermit and then became a ambulatory wheelchair user. So my. And I'm also autistic and have therefore a kind of black and white sense of justice and right and wrong and rules following that is a little more intense than perhaps typical. Does that make sense?
- [01:17]
B
For sure, yeah.
- [01:19]
A
Okay, so here's where I'm coming from, is that I have not had any time to internalize the idea that because I'm disabled I should be apologetic for needing more resources. I mean, like a little bit I have that, but there's a lot of me that's just like, why should anything about my life be different just because I can't walk very far? You know what I'm saying?
- [01:49]
B
I do know what you're saying.
- [01:50]
A
Yeah.
- [01:51]
B
And it is the case. So because I, when I'm walking long distances, I walk with a cane. So at a place like an airport, for example, I board with the people who are using wheelchairs. And I absolutely have witnessed the apologeticness of people who are disabled who use wheelchairs. They're almost always super ultra friendly and nice toward the people who are wheeling them down the jetway. So I have witnessed the sort of tone that most disabled people have when they are utilizing services at an airport, for example.
- [02:30]
A
Yeah. And I have been that person until the. The compulsion to be apologetic and like obsequiously grateful to someone who's helping you. It was too exhausting from my mask. And that's, that's why I ended up wanting to own my own power chair.
- [02:55]
B
Yeah. Other people who are physically disabled may not have the developmental disability of autism and need to mask socially, which is like you have limited energy and masking uses up some of that limited energy.
- [03:08]
A
So much energy. So anyway, so thing number one you need to know about people who are disabled who might be using a wheelchair is that the majority of people who use wheelchairs are ambulatory. Most people who use a wheelchair can walk and stand to some degree. And I feel like there's some of the. Well, you're. Why are you using A wheelchair. If you can walk, it's fake.
- [03:37]
B
If you. If you can walk at all, why are you using a wheelchair?
- [03:41]
A
Right. Yeah. Because if I walk a hundred steps, I'm gonna have to lay down, is the answer.
- [03:46]
B
Yes.
- [03:46]
A
A hundred steps is almost never enough steps in a situation that requires steps.
- [03:51]
B
It's not enough to get down a jetway, mostly. No, no.
- [03:55]
A
It's not enough to get to the ticket counter at. I mean, it's not enough to get from your parking spot into.
- [04:00]
B
Yeah.
- [04:01]
A
Into an airport. Yeah. So thing number one, people who use wheelchairs. Most of us can walk a little bit. Thing number two, people who use scooters instead of wheelchairs have the same disability as people who use wheelchairs. I've tried. I've rented mobility scooters. And the difference in treatment you get when you use a scooter versus a chair is shocking. The rules are different based on whether you're using a scooter or a chair, as though you are more ambulatory than a person who uses a chair. And I'm just. I was just shocked by that. That's weird. I didn't. I'm using the scooter because I can't. I can't walk that far.
- [04:44]
B
It's not that the actual rules are different for a scooter. It's that the way people behave, the sort of implicit social rules. Well, no.
- [04:54]
A
At Disney World, for example, you can take your wheelchair into a restaurant if you are on the street.
- [05:00]
B
Oh, you can't take a scooter. That's right.
- [05:02]
A
You can't take a scooter into the restaurant. They assume that you can walk to your table.
- [05:06]
B
That's nuts.
- [05:08]
A
Yeah, that's right.
- [05:09]
B
I was there with you when you were using a scooter instead of a wheelchair. You wanted to see what it was like, and it was not good.
- [05:17]
A
That was the first time, and it has happened again since, when I rented a much smaller scooter, a very, very, very compact scooter that didn't take up any more room than certainly the power chair I use now. And they were like, oh, you can't bring that in here. And I was like, but I can't walk. My table's all the way back there. I can walk back there. Yeah. So that's bananas. So the different standards and the expectations of people who use mobility aids are bananas. And. Which brings me to my final conclusion. The thing I want to say about AIDS is don't touch a person's mobility aids or hearing aids or service animal or crutch or any other aid that they might be using. Don't touch it without their consent. Consider an aid an extension of the person's body until they say otherwise. Don't touch an aid without express permission. And I don't know why I have to say this, but people feel fine, just like grabbing your chair and moving it. Like, don't do that. But I feel like I. Yeah, it feels.
- [06:29]
B
It feels nuts to say that, but.
- [06:31]
A
Yeah, and I feel like I should have to explain it.
- [06:33]
B
But also, like, even if you just. If you just consider. I mean, apart from anything else, like, that's $5,000 you're touching. Yeah, if a person had a $5,000 laptop that was sitting on a table and somebody just picked it up and moved it.
- [06:50]
A
Right, that would be.
- [06:52]
B
Yeah, we would all understand that, like, that is that person's precious, valuable, probably like necessary for their life device. Yeah, we would all understand a $5,000 laptop.
- [07:07]
A
Right.
- [07:08]
B
Like, you don't touch people's shit.
- [07:10]
A
A, don't touch people's shit. B, don't touch people's valuable shit. C, don't touch things that people depend on.
- [07:17]
B
Depend on to be able to exist.
- [07:19]
A
In the world in the same way that you do.
- [07:22]
B
Yeah. Don't touch people's shit. Don't.
- [07:24]
A
Don't touch. Don't touch people's.
- [07:26]
B
Whether the person is currently using it or not.
- [07:28]
A
Yeah. So that's what I have to say about aids, specifically mobility aids.
- [07:33]
B
Do you want to tell the story of the recent.
- [07:37]
A
No, I don't want. I mean, there was. The reason we're doing this right here, right now is because I had a recent bad, bad interaction with a pilot on JetBlue and.
- [07:51]
B
Keith. Hi, Keith.
- [07:53]
A
You owe me an apology. Keith.
- [07:55]
B
You did it wrong.
- [07:56]
A
You did it wrong, Keith. So here's me trying to provide some information for the world. Okay? So I also want to talk about accessible bathroom situations.
- [08:10]
B
Oh, my God.
- [08:11]
A
And to talk about when is it okay to use an accessible bathroom stall. Is it ever? Okay, yes, there are absolutely. Circumstances.
- [08:19]
B
Default, no. Yeah, default, no.
- [08:22]
A
I've been in a lot of public bathrooms in my wheelchair, and about 30% of the time there's somebody in the wheelchair stall when I get there. And there are other stalls free. And I do not judge. I do not judge with visuals. If somebody needs the wheel, the wide, wheelchair accessible stall, there are lots of invisible reasons why you might need the wide, wheelchair accessible stall. How I know that people are using the wheelchair accessible stall who don't need it is that they apologize to me when they see me waiting when they come out.
- [09:02]
B
There you go. Yeah.
- [09:04]
A
If you come out of a wheelchair accessible stall and you have no visible reason for having needed to be in there, I will never, ever judge you. Never. Not once. Never. I will assume you needed to be in there for some invisible reason and, you know, cool. Have a great day. That's, that's fine.
- [09:22]
B
Sure.
- [09:23]
A
But so, I mean, the, the basic guideline that I can offer people is that if you would leave the stall and see me in the wheelchair, would you feel like you had to apologize to me? Oh, I used the only stall you could use. Sorry. If so, don't use that stall. I mean, that seems pretty easy, right?
- [09:45]
B
The example that drives me nuts is when it is a parent and one small child.
- [09:52]
A
Yeah.
- [09:52]
B
And the parent chooses that stall because they want to be in there with their child. And not only do they stay there in there, and they're. There are lots of parents who, like, use the same standard stall with their child. It happens all the time. It's just luxurious and comfortable to be in the big stall.
- [10:10]
A
It's nice.
- [10:11]
B
And also very often it has its own sink. So not only do both of them pee and then they both wash their hands. And children take a thousand fucking years to wash their hands because, you know, they're small children.
- [10:25]
A
Yeah.
- [10:26]
B
And those are the people who come out and see that they have just spent 20 fucking minutes. Not literally 20 minutes, but like, they've.
- [10:35]
A
Been in there four or five minutes.
- [10:36]
B
They've been playing with the water and drying their hands. And they come out and they see that they have been using the only stall that you could have used when they absolutely. Like all the other parents in the bathroom could have been using a standard stall with their child and they were just indulging themselves.
- [10:57]
A
Yeah.
- [10:58]
B
They apologize.
- [11:00]
A
Yeah. And I, I do want to make it clear that if you need the big stall, the wheelchair accessible stall for an invisible reason, please don't feel compelled to apologize. Please don't apologize. Like, I feel like we should develop a nod, like a, hey, big stall user. Me too. You know, like.
- [11:17]
B
Yeah.
- [11:18]
A
So you don't feel like. You don't need to explain. First of all, if you have a disability, you don't need to explain anything.
- [11:24]
B
To me, to anyone, to anyone, ever, ever. Yeah.
- [11:26]
A
But if you feel like, oh, that person's in a wheelchair and they're more disabled than me, and I just use up a resource that they needed. If you needed it too, you are allowed to use it.
- [11:38]
B
Yeah.
- [11:39]
A
Do not apologize to me. Just give me the like. Yeah, I know. I'm a big stall user too.
- [11:44]
B
Yep.
- [11:45]
A
Enjoy. You know, like, don't apologize to me. Please feel like comfortable and proud to have used the stall that you needed to use and come on out. That's fine. So if you have an invisibility that is not visible. Sorry, my brain's not 100% on this morning. Apparently, if you have a disability that's invisible, don't apologize to anybody ever for using the resources that you need to use. Okay, so here's another circumstance where it's okay to use the big stall. Number one was if you have an invisible disability, that means that you need to use the big stall. Number two is if there's a big long line and everybody's waiting and one stall opens and one person goes. And one stall opens and one person goes.
- [12:30]
B
Yeah.
- [12:31]
A
Yes. The wheelchair accessible stall should be part of that rotation. And I will wait in line with everybody else. But when in situations like this, it's a big bathroom usually, right. And there's like multiple stalls. So when we get to, like, close to the end of that line, it's a very. It's getting very short. We're both close to the front and. And the line's moving pretty fast because there's so many stalls. In that case, when the wheelchair stalls open, it would be polite of you to let me use the wheelchair stall. Because odds are, if you wait 10.
- [13:03]
B
More seconds, even though you're not next in line, because if you wait 10.
- [13:06]
A
Seconds, you can use any of the other stalls that open. Like, it would be polite for you not to take the wheelchair stall if you're the person right in front of me. So I gotta wait for you while all these other stalls open up and 10 people behind me are gonna get to go. Well, it would be extra nice if you would just be like, oh, the wheelchair stall opened up. So you go ahead, you know, and in 10 seconds, you're going to get to use any stall, no matter which one it is. Does that make sense? Does that seem fair?
- [13:38]
B
Yeah.
- [13:39]
A
That's a little bit of a subtle nuanced when we're waiting in line thing.
- [13:42]
B
That's the kind of attention paying that a person with a disabled person in their life.
- [13:48]
A
Yeah.
- [13:48]
B
Would do pretty intuitively.
- [13:51]
A
Yeah.
- [13:52]
B
And that a person who doesn't have a disabled person in their life might feel embarrassed to be like, oh, I noticed that you're in a wheelchair and I noticed that you have a need, and I'm like, offering this to you, and they might feel like it's like pointing out to the disabled person that they're disabled. Like, you don't know. And it's not like you don't know that people can see.
- [14:17]
A
Yeah, yeah. And if you are a person who doesn't use a wheelchair but needs a big stall, I don't think it would be inappropriate for you to say to the, you know, a couple of people in front of you, I need to use the big stall I need. So maybe when that opens up, could I. That's the only stall I can use. Like, I think you should feel free and comfortable to say that. Yeah, no, I don't have a chair. But there's another. There's. I. That's the only stall I can use. That's. That's the one for me. Could you help me out? I think we should feel free asking.
- [14:49]
B
Yeah.
- [14:50]
A
And kind of. I think it would be great if we could have more conversations about invisible disabilities and reasons for using accessible resources that are not being in a chair. You know, so in general, the guideline is use the minimal support need provided. So often there will be, like, regular old stalls, and then there might be narrow stalls with rails. So people who need help getting up and down but don't need a chair.
- [15:22]
B
They have those at the Hartford Airport.
- [15:24]
A
Yeah, they have. It's a lot of public spaces have these different levels. So, like, just use the minimum one that you want. Like, so there's the regular ones, the ones with rails, and then there's the wide ones that are the new ADA, like, more recent than the 80s, ADA compliant, where you can actually, like, go in, turn your chair around, and then potentially, like, transfer yourself over.
- [15:45]
B
Yeah.
- [15:46]
A
And then there are companion restrooms, which are the best restrooms. Because it's like, just a bathroom.
- [15:52]
B
Yeah.
- [15:53]
A
I love a companion bathroom because it's bigger than an accessible stall. So it's so easy to, like, go in and turn my chair around. But I don't use a companion bathroom because I don't need it. It's easier and it's more comfortable, but I'll only use the companion bathroom if it's a super emergency and the wheelchair stall is being used. So, like, if I'm like, I need to go now, and the companion stall is the only stall that's available even close to soon, that's. I will use it. And I think it's the same thing is true about wheelchair stalls for people who don't need a wheelchair stall. If you're like, that's the only stall. And I got to go right now, like, by all means, have at it. Like in a spirit of generosity and helping each other, let's share these resources for the people who need them the most. That's kind of the guideline here. But having a suitcase is not a reason to use the wheelchair accessible stall. Having an able bodied child with you is not a reason to use the wheelchair accessible stall. Does that seem fair?
- [17:02]
B
Yes.
- [17:03]
A
Okay. So if you are a parent alone with multiple preschool age children, you get to use the wheelchair accessible stall. You are in an extremely difficult situation. You deserve help. And the only help I can give to someone in that situation is to patiently wait while they're 3 year old and 5 year old and 7 year old, maybe even like all pee in succession, all in one stall so they're not running around the bathroom all loose or all cramped into a tiny like. I think that's fair. You know, that's another great reason to have a bigger stall available. The companion restroom was also a great reason, is also a great resource for a family like that. Does that make sense?
- [17:53]
B
Yes.
- [17:53]
A
Yeah. So I mean, in the spirit of generosity and helpfulness to all people, I think these are the guidelines about when it's okay to use.
- [18:05]
B
Do you want to use the story about your phone or no?
- [18:10]
A
No.
- [18:11]
B
Okay.
- [18:12]
A
Should we, what do you think?
- [18:16]
B
I think the point of the episode is that you are in fact judgmental of people who use the big stall who don't need it.
- [18:24]
A
Yeah.
- [18:24]
B
And you do text me while you're waiting.
- [18:27]
A
Oh, yeah. It's so frequent that like it's so obvious. Yeah, yeah.
- [18:33]
B
When people don't need it.
- [18:35]
A
All right, okay, so here's this happened last week. We're at Disney World, right. And I go into a bathroom and many, many free available stalls in this big bathroom, wheelchair stall has got somebody in it. Not someone sitting on the toilet, someone standing in front of the sink, washing their hands, drying their hands, going back to the mirror, stepping towards the mirror, slash sink, and then away from it and then toward it again. They're like, they're doing their hair right. They're checking their makeup, they're doing things you could have done out when they're making me wait. And so I text you. If this person apologizes to me, I'm not going to be nice. If they apologize, it's because they know they didn't need to be in there for all that.
- [19:21]
B
Yeah.
- [19:21]
A
And then they saw me and went, oh, I shouldn't have been doing that. If they apologize, I'm not going to be nice is what I texted you.
- [19:28]
B
Yeah.
- [19:28]
A
And they came out and said, oh, sorry. If you're sorry, then why did you go in there and why did you spend all that time in that stall when you did not need to be? So I went in and I texted you. Like, they apologized and I gave them a tight smile, which is. Right. My judgmental. Mm. And then so peed. Washable. And you know what?
- [19:52]
B
Like, maybe that person's gonna think twice the next time they're like, oh, let me take advantage of this, like, private moment for myself, I guess.
- [20:01]
A
Right, Right. Meanwhile, there's somebody raiding. So I peed and then I don't wash my hands in the stall because I know that I don't need to wash my hands in the stall. Almost all the bathrooms in Disney World have wheelchair accessible sinks where there's, like, room for you to slide your knees underneath the sink.
- [20:21]
B
Most people think they're cute children's sinks.
- [20:24]
A
Yeah.
- [20:25]
B
Because they're lower.
- [20:26]
A
Soap dispensers are lower. Like, most of the bathrooms in Disney World are accessible to a chair. I don't need to use the one in the accessible stall. Right. So I don't. So I went out, I washed my hands, and then I went to text you. Like, I left the bathroom and I went to text you, like, I'm out now. Like, whatever. And I realized I didn't have my phone. So I went back in and there was somebody else in the wheelchair accessible stall. And she poked her head out. It was a teenager. And she poked her head out and looked around and I went, yep, that's my phone. And she was like, oh, okay. And my phone has a long screen timeout. Like, my screen stays open for a very long time because it just makes more sense for me. So open on the text was my text to you with the exchange on it. If this person apologizes to me when they come out, I'm not going to be nice to them. And you being like, I feel like that's fair. And me being like, I gave him a tight lip, smile and maybe something. Yeah, yeah. And that was about it. And I'm like, she probably was able to read those texts. And when she came out and she apologized, she looked around about the phone and then she was like, sorry. And I was like, she probably knew about all my whole. Yeah. So maybe she will think twice next time that she makes the. You know, should I use, ooh, the big stall is open. Or is she going to be like, maybe I'll just use any of the other stalls that I can use?
- [22:02]
B
Yeah.
- [22:03]
A
It was hilarious.
- [22:06]
B
1 Don't touch people's aids without their consent. 2 People using mobility aids all have differing needs, and yet all have the same need. And you can't determine what need they have based on what mobility aid they are using.
- [22:24]
A
Right.
- [22:26]
B
Three, public bathroom situations. Use the minimum support that you actually need. And circumstances vary widely on what that is. But, like, make a choice, especially considering, like, if I get out of this stall and there's somebody waiting who truly needs this and only this stall.
- [22:47]
A
Yeah. There's you.
- [22:48]
B
Almost always, only one will I feel obliged to apologize.
- [22:51]
A
Right.
- [22:52]
B
For having used this resource and made the other person wait with a full bladder.
- [22:57]
A
Right. There have been a few circumstances. I mean, I. I don't need to park my chair next to the toilet and scoot myself over. I have enough use of my legs that I can stand up and walk over to the actual toilet. That's fine for me. But the thing is, in most bathrooms, I can't just leave my chair outside the stall. It's gonna be in people's way, and it's probably not safe. Right, right. But there have been circumstances where I have left my chair in the bathroom. If it's a big. Okay, here's when this happened. It was at the Met Opera, not during intermission. So the bathroom was not busy. It was huge. And it's a very nice bathroom. So I just left my chair out in the wider bathroom and used a regular stall. Cause I didn't need to use the wheelchair stall because there was no reason I had to have my chair in the stall with me. That's an example of me using minimal support. Yeah, but sometimes the support is just. I have to. I have to put my chair someplace while I pee. So it's gotta be in the stall with me. Anyway, so if you're. If your kids can pee without you and you're in the wheelchair bathroom, you owe me an apology.
- [24:14]
B
Yep.
- [24:15]
A
But if you need the big stall for reasons that are invisible, don't apologize to me. Give me the. Give me the knot. Hey, fellow Big Stall user. Yeah. Okay, so moving on from ability aids, other rules for interaction with people with disabilities. Don't talk to us like we're children and don't assume that we're intellectually disabled. That's. That's all. That's it. That's the whole. Okay. That's the sentence. Don't, I mean, talk to adults like they're adults.
- [24:47]
B
Assume adulthood.
- [24:48]
A
Assume competent. Adulthood.
- [24:51]
B
Peer.
- [24:51]
A
There's a lot of, like, for all. Like, we were talking in the Disney episode about how like, silly and fun. It is that at Disney, they really, like, pay extra attention to people with.
- [25:01]
B
Yeah.
- [25:02]
A
I mean, me in my chair. Like, it's a different experience for me than it is for you with a cane.
- [25:06]
B
Yes.
- [25:06]
A
Um, and it's funny and hilarious, but it's always, like, uplifting and generous feeling. And it's never like, you know, hey, honey, what do you need? Like, condescending.
- [25:19]
B
No, they compliment your stuff.
- [25:21]
A
Yeah, just super extra nice. And being super extra nice is very different from being condescending and talking down. And it happens surprisingly regularly that. Because I'm lower down than people. Are they. I don't know. Once they're looking down their neck, tells their brain that they're talking to someone without the same intellectual capacity as they have. Don't do that, please. Thank you. Okay, now I want to talk about helping people with disabilities.
- [25:58]
B
Yeah.
- [25:58]
A
And this is the. This is the last. This is the final point. If you want to help someone with a disability, ask first. Do you want help? Can I help with that? Can I get that for you? Ask. And if they say no, don't say, are you sure? Don't follow up. You don't need to press. If we need help, we'll accept help. Sometimes we'll even just ask randomly. Hey, you're a person. I need. I'm in this. I have to ask all the time because people put their shit down in front of ramps because the stairs are right there. They came down the stairs and then they just drop their stuff and it's blocking a ramp, and I need to be like. Or there's clearly an aisle, and they're sitting in a chair towards the aisle, and they're, like, scooted way back from the table. Or their stuff is behind their chair and it's blocking the aisle. And I have to ask, hey, I need a few more inches. Could I. And usually it's a. Oh, yeah, of course. Sorry. And people are very nice about that. So we'll, you know, if we need help, we'll. Generally, we're used to having to ask, so we're going to ask. So if you ask and we say no, don't. Don't argue. Don't push.
- [27:08]
B
Yeah.
- [27:09]
A
If we say no, take that as a no. And I get that a lot of people are helpers. Naturally, we want to help people around us because we're loving human beings. Like, that's so great. But if you find that you have imposed help on someone who didn't want it, don't be offended if they aren't nice to you. Disabled people don't owe you gratitude if you give them something we didn't ask for. Does that make sense?
- [27:38]
B
Yeah.
- [27:39]
A
If you hold the door for me, and I don't want you to hold the door for me, I can get a door, no problem. I open doors all day. Even from a wheelchair, I can open a door. And you know what? A lot of times in public spaces, there's automatic doors. You can push a button and it opens. Sometimes the door does about a third of the time the power door with the button is broken. Especially in, like, not completely public spaces, like schools. We were just at a school, and I've been to, you know, as a, you know, I go to schools for things, and schools are especially bad for having inconsistent doors. Medical offices, surprisingly, the thing is that the doors break and nobody reports it because not that many people need it so much that they'd be like, oh, that doesn't work. And then, like, feel the need to tell somebody, yo, that doesn't work. Maybe somebody should go fix that. So medical offices, I've had to do at least three times. I've had to tell people in medical offices, your. Your button door doesn't work. Anyway, my point is about helping open doors and other nice, generous things for, like, reaching things on a high. Whatever. If you're a kind, generous person and you. And you find yourself helping without having asked first, apologize is the right thing to do. Oh, sorry. I should have asked first. That's it.
- [29:04]
B
That's it.
- [29:05]
A
It's no big deal. And you don't have to grovel. It's fine.
- [29:08]
B
And when a person asks, do the thing they asked for.
- [29:12]
A
Oh, yeah.
- [29:13]
B
And nothing else.
- [29:14]
A
That's the. That's the. Yep. Yeah. So if you have impulsively helped and the person's like, no, no, I don't want your help. Oh, sorry, I should have asked first. Okay, gotcha. Have a good day. And if they do say, hey, I need help with this, do the thing they asked for. Exactly right. Don't do the thing that you think they need or the thing that you think you can help with best. When they say, hey, could you help me reach that thing? Don't bring another thing. Or like, I don't know what circumstances there would be. Like, say someone asks for you to help move some stuff out of the way. Help move the stuff out of the way instead of touching that person's mobility aid to, like, get them around the thing or to. You know what I'm saying? This might be a thing that just happened to me very recently. Yeah. I had a great experience also. On the same trip, I was at the airport, I dropped my phone, and I was under my chair, and somebody walked by and said, your phone's under your chair. Do you want me to get it for you? And I was like, God, yes, that would be really helpful. Thank you so much.
- [30:27]
B
They asked.
- [30:28]
A
They did the thing that they offered to do that I consented to, and only that really helped me. And then it was, goodbye, have a great day. It was a fantastic experience. And I was like, see? Some people know. Some people already just know how to do it. He didn't grab my phone off the floor and be like, is this yours? He didn't know. I think your phone's under your chair. Can I get. It was. It was perfect. It was magnificent. It was everything and more that it should have been so easy.
- [31:03]
B
Don't have to have a lot of awkward feelings about it.
- [31:05]
A
Nobody had any awkward feelings.
- [31:07]
B
I think that's why people fuck up, is they get. Their nervous system gets activated by the idea of a disabled person, and they don't want to do it wrong. And also they're like, disability makes me uncomfortable because it reminds me of our mortality. Yeah. And so they're, like, inflamed. They don't want to be. But they're, like, embarrassed. They don't want to do too much. They don't want to do too little. And, like. So I think these rules are helpful because it's very simple. If a person asks for help, help them with that little thing with specific. With just the thing they ask for and not more. Don't treat their mobility aid as part of their body. Don't touch it without their consent.
- [31:51]
A
Yeah.
- [31:51]
B
Whether they're currently using it or not.
- [31:54]
A
Yeah.
- [31:54]
B
It is an extension of their body. It is body scaffolding.
- [31:58]
A
Yeah. The vast majority of people are extremely nice and supportive and kind and generous, and they don't want to be rude. They don't want to. They just want to be nice. Like, I have again, at Disney World.
- [32:13]
B
Okay.
- [32:14]
A
When I'm at Disney World, I like. It's really the only place where I carry food in my chair. Ordinarily, if I'm at, like, a conference or something. Yeah. I'm not carrying a drink or an ice cream or something with me in my chair. So this has happened at Disney World multiple times, but only at Disney World where I hit a bump.
- [32:33]
B
You pick up your food at the counter and you have to carry it to a place to eat.
- [32:38]
A
Yeah. So I. And I hit a bump and I Spill whatever it is all over me. All over my chair. It has happened multiple times. People have run from across a wide walkway with a fistful of napkins to hand to me, and I'm like, thank you. That's very. Cause I'm nowhere near napkins.
- [32:59]
B
Right.
- [32:59]
A
And they're just like, oh, my God, that poor person just spilled everything all over. They have one time, it was mango lassi. It was.
- [33:07]
B
Oh, God. Sticky and, like, thick and just, like.
- [33:12]
A
All down my legs and, like, on my chair. And so ran across, like, from the thing all the way out to the other side of the thing and multiple fistful of napkins. And I was like, that's really, like. That's so nice.
- [33:27]
B
So nice.
- [33:28]
A
Somebody sees a need. And, you know, I'm sure if I said, no, no, I don't want your napkins, ma'am, maybe. Maybe she would have been, like, bothered by. But, like, I wanted those napkins, babe. I wanted them. I did. People are so aware, and people are so, in general, like, really nice and supportive and all that's really good. But there's a little bit of nuance to doing that. Well, for example, when people want to hold doors open for me, and what I need is for them to get out of the way. Like. Yeah, if there's a narrow doorway and you're holding the door, I'm going to run your toes over.
- [34:08]
B
Yep.
- [34:08]
A
You hold doors a lot for me. And I'm like, nope, just. You need to move now.
- [34:12]
B
Yeah.
- [34:12]
A
And you don't care because I'm just. Because you're like, oh, right.
- [34:15]
B
Okay. Yeah.
- [34:16]
A
But also, you're not in the chair, so you don't, like, have a sense of, like, how much space I need to roll forward and how at risk your toes are. Yeah.
- [34:24]
B
No.
- [34:24]
A
Of being run over by £340 of me in my chair.
- [34:28]
B
And I only, like. I don't do it that often.
- [34:30]
A
No, very rarely. Very rarely. But it, you know, once in a while. But I don't have to be nice to you about it. So I don't feel any, like, masking exhaustion from telling you to get out of the way.
- [34:43]
B
No, just get out of the way.
- [34:44]
A
Yeah.
- [34:45]
B
And it is the case, like, that.
- [34:46]
A
The door will hit your chair, but, like, that's fine.
- [34:49]
B
You literally can't get through the doorway if I am in the way.
- [34:53]
A
Okay.
- [34:53]
B
This is.
- [34:54]
A
Okay. This is also another point. Sometimes people with physical disabilities or intellectual disabilities, we just take a little more time to do a thing.
- [35:05]
B
Yeah.
- [35:06]
A
And people see us taking a few extra seconds to, like, reach Forward and then pull a thing a little bit and then back up and then pull it a little bit more. It takes a few extra seconds for us to do, you know, a little bit more complicated.
- [35:21]
B
Yeah.
- [35:22]
A
Way of doing what somebody else would do very, very easily. Just because it takes us a few seconds longer, don't think you need to rush in and do it fast.
- [35:31]
B
For us, it doesn't mean there's anything wrong.
- [35:33]
A
It doesn't mean there's anything wrong. It just means that, like, there wasn't enough room for me to reach the door, pull the door open, get my chair at an angle where it can go through the door. It's gonna take a couple of tries. Not because I can't do it, but because the nature of being in a chair that has a certain width and length and lining it up at a certain angle and it has a certain turning radius, and it's gonna take me bit of finagling to do the thing, but it's much easier for me just to do the thing myself than to have to, like, A, pretend to be nice to you even though you're doing a thing I don't want you to do, to, like, try to grab the door for me, and B, to try to, like, now add to my physical challenges. The task of not running you over.
- [36:17]
B
Yeah. The principle. I think so. People like autonomy. If a person not in a chair is slowly going about doing something, like, maybe they've got manual dexterity issues. Like, all kinds of reasons why people would take longer to do. All kinds of reasons. People like autonomy. All people like autonomy.
- [36:41]
A
Yeah.
- [36:42]
B
People prefer to do things independently when they can. Like, I walk with a cane, and I prefer to walk as much as I can, which is not as much as I used to be able to walk. But the cane is the thing that gives me maximum mobility. And I encounter much less bullshit with a cane than you encounter in a chair.
- [37:12]
A
Yeah.
- [37:13]
B
People see me because I am that, like, their height. I'm at, like, full adult height. And so, like, I don't get bumped into the way you do in a chair.
- [37:28]
A
Or ignored.
- [37:29]
B
Or ignored. Yeah, yeah.
- [37:34]
A
Yeah. That's true. So the. As a final review, mobility aids, people use them, but a lot of times they don't use them all the time. And that's okay. Don't be, like, astonished or, like, mad that somebody's using an aid and then they stop using the aid, you know?
- [37:54]
B
Yeah. I think one of the main things is, like, most people who use wheelchairs can walk.
- [38:01]
A
Yeah.
- [38:02]
B
That does not mean they don't need it.
- [38:04]
A
Can hear to some degree. Usually people who have glasses can see to some degree. Usually.
- [38:12]
B
Not always.
- [38:13]
A
Not always.
- [38:14]
B
But don't be shocked when somebody stops using an aid and doesn't lose all access to whatever they were being assisted.
- [38:22]
A
With or confused or mad. Which.
- [38:26]
B
Yeah. Which people have gotten actually mad at you.
- [38:28]
A
Yeah.
- [38:29]
B
For being able to walk.
- [38:31]
A
For being able to walk. Yeah. Yeah. And when it comes to. So that's thing number one about aids. Don't touch their aids and don't be astonished when they stop using them and they still are capable of being a human being. Yeah. Yeah.
- [38:42]
B
One of the things is I do feel like when I'm walking with a cane, I can't take five steps over to the trash can without my cane. Cause I'll think people will think I'm faking it.
- [38:52]
A
Right, right.
- [38:54]
B
But, like, I can walk five steps over to the trash can without my cane.
- [38:57]
A
Yeah.
- [38:58]
B
I'm gonna be all right. But I feel like I have to take. I have to use up one of my hands to take my cane with me to make sure I'm showing the.
- [39:06]
A
World a hundred percent. Yeah, 100%.
- [39:11]
B
Even though it'd be so much more convenient to, like, just use both my hands with whatever I'm throwing out.
- [39:16]
A
Yeah. A cane is a very little help to me, but I tend to walk with a cane just to, like, explain to people why I'm so slow. Yeah.
- [39:27]
B
One of the valuable things about using a cane for me is, like, a physical representation of I'm slow.
- [39:36]
A
Yeah. And then we also talked about public bathrooms to review. It was the rule of thumb is use the least amount of support available that you require.
- [39:48]
B
And granting that, there are lots of situations where people need, like, all of the support available.
- [39:54]
A
And if you are someone who needs a support thing and not for a reason that is typical or that people assume or that is immediately visible, do not apologize. You need that thing. You need that thing. Use that thing, you're fine. And y'all don't judge somebody who's using the thing just because they don't, you know, conform to your expectation of who needs the thing. And if you don't need the thing and you feel like you would need to apologize to me when you get out, don't use that thing. Yeah.
- [40:31]
B
I think that's a nice rubric. If you feel like you would need to apologize to someone for using up a thing they needed very obviously more than you did.
- [40:42]
A
Yeah.
- [40:43]
B
That you didn't need. And they absolutely did.
- [40:48]
A
Yeah.
- [40:48]
B
If you feel like you would need to like, if you're thinking to yourself, if a wheel. If I come out of here and someone in a wheelchair is waiting, am I going to feel bad? Yeah, don't use it.
- [40:59]
A
Or if you would feel bad even though you need it, please accept my permission right here, right now to look bad.
- [41:09]
B
There are lots of reasons.
- [41:10]
A
It was the only stall and you had the runs, but by all means you needed that stall. Do not apologize. You did what you had to do. And it is part of my job to exist in the world to be generous and supportive to others.
- [41:25]
B
Right.
- [41:25]
A
That was the only stall available and you were in an emergent situation. Don't apologize to me. If you need that stall for an invisible reason, don't apologize to me. Be proud, fellow big stall user. If your child can pee alone, don't use a big stall.
- [41:44]
B
And even if they can't, there's a lot of parents who use a standard stall with their child. Is the big stall better?
- [41:51]
A
Yeah, it is, but it's not necessary.
- [41:55]
B
And there's only one almost always.
- [41:58]
A
Yeah.
- [41:59]
B
Even in really big bathrooms, there's almost always only one.
- [42:02]
A
I wonder if people think, what are the odds there'll be someone with a wheelchair?
- [42:07]
B
I'm sure people think that one of.
- [42:09]
A
The odds will be someone because we're not visible.
- [42:11]
B
But when you're in a massive public place like a theme park or an airport, there's going. Or an airport, there's going to be people who actually need that. Yeah, yeah, there's going to be.
- [42:24]
A
Period.
- [42:24]
B
There's going to be.
- [42:26]
A
Don't talk to physically disabled people as though they're also definitely intellectually disabled or children, yet talk to adults like they're adults. And, and when it comes to helping, ask first and listen to what the person says they need and then do that thing. And do not expect obsequious gratitude when you do a thing they didn't ask you to do.
- [42:53]
B
Yeah.
- [42:54]
A
And don't pressure anybody to accept your help.
- [42:57]
B
Yeah.
- [43:00]
A
Can I give one more bad example? Sure. Somebody helping? So I'm sitting at the, at the check in desk at the, at the gate at the airport and I've got to gate check my chair. I've got to sit there and get a tag out. I'm gonna get my ID out. I've gotta get my boarding pass out. There's a lot of like faffing around and answering questions and filling out a form and attaching it to the chair. It's a whole thing. And you know, I had reached around to get my ID out. Blah Blah, blah. In my backpack that's hanging off my chair, and my backpack fell off my chair. And lady behind me gets up, hands me my backpack, and says, you, backpack fell on the floor. And I was like, oh, yeah, I know. It's fine. Just leave it. I'll get it in a minute. I'm in the middle of, like, talking to this. The gate agent person and getting the tag on the chair. I'm doing, like, five other things. So, like, I just. It's gonna be. Have to be later. She's like, I'll put it on for you. But it's, like, a little bit complicated to put the on the chair. There's actually, like, a special thing that's designed to hold the backpack on, and you have to, like, squeeze the straps between two little things to, like, make sure it stays. And I had pulled it out from the little thing, which is why it fell off. And so she tried to put, like. While she's saying, I'll do it for you, but, like, she can't do it because it's more complicated than it looks. I'm like, no, no, it's fine. I'll get it in a minute. It's more complicated than it looks. Just leave it. It's fine. And she was like, oh, oh. And looking at me like, I guess you don't want my help. No, that's correct. I don't. I don't want your help. I just. It's fine if my bag is on the floor for a couple of minutes while I do six other things. Yeah, that was. Now I had to add, like, you know, conversation with you is now on my to do list. And that's the thing that's harder for me than for typical people. But nobody wants to have that extra conversation. Right?
- [44:47]
B
And that's an invisible part of your situation.
- [44:49]
A
Yeah, but, like, don't. Why was she so insistent about picking my bag up off the floor? Like, was it hurting her that my back was on the floor? Like, what is. It's fine. No, she felt compelled to help because she's a helpful person but listen to people.
- [45:08]
B
But she could have heard your no and been like, cool, okay, great.
- [45:11]
A
I'll just leave that there for you. Thanks.
- [45:16]
B
Let me know if you need anything.
- [45:17]
A
I get that people have complicated feelings. Like, maybe she was also feeling like, you know, maybe she had feelings about being helpful. And, like, she herself wants to make sure that she's being the helpfulest and proving to the world that she is of help. Maybe she's got stuff where she feels like, she can't be helpful enough in her own life, and so she's got to do it right here, right now, this way. Like, I don't know. But, like, her. Her feelings are not my job.
- [45:43]
B
So I'm now feeling like I did something wrong recently.
- [45:48]
A
Oh, what'd you do?
- [45:51]
B
So, boarding a plane. The people ahead of me are an elderly couple. He's in a wheelchair. She is pushing him. He's got their bag in his lap, and it is heavy. I can see by the way it moves that it's heavy when the flight attendant takes it off of his lap and puts it on the ground so that she can assist him in getting onto the plane. And, like, we had been standing there waiting for a while to board the plane there in the jetway, having a little chat about, like, oh, there's a door on the far side. And I'm like. She was like, I never knew there was a door on that side. I was like, that's where they put all the food in and stuff like that. And we were talking about, like, imagine if we were up in New England right now. We'd be so cold. Good thing this is happening. And she's talking about having to, like, sit literally outside a tiny plane when it's freezing cold and her husband is in this chair. And I was like, yeah, yeah, I've had to do that. I have a twin who's had that same terrible situation, and it is bullshit. So we, like, had this chat, and I felt sort of bonded. And so when the flight attendant starts assisting the husband onto the flight, his mobility is truly limited. Like, in my opinion, they should have been using the little scooty thing they have to help people who cannot walk onto the plane. I understand that people want to be as autonomous as they can be, but while this is happening, the wife is telling me a story about a flight attendant who literally, like, picked him up. Like, they were dancing and was very sweet about it. And there were so many delightful, wonderful, heartwarming things. And I was thinking about, like, one day, that's going to be me and Rich, only I'm the one who's going to need help getting on the plane. And I texted Rich about that, and he's like, by then, they're going to have exoskeleton suits.
- [47:48]
A
Yeah.
- [47:50]
B
But I was like, can I help with your bags? These are easy for me to carry. Can I help? And I picked up their bags, and neither of them said anything to me because they were totally occupied with the very gradual process of him taking, like, Half a foot length, step at a time, and his wife is standing with her hands on either side of his hips, ready to catch him if he falls.
- [48:18]
A
Yeah, but I touch their stuff. I think touching people's stuff is not as bad as touching their aids.
- [48:25]
B
The thing is, they didn't have any AIDS of his own. And I was like. And like, she was like, he's used to using a walker. And I was like, why does he not have a walker right now?
- [48:36]
A
He should have been bringing his walker with him. Why, why?
- [48:39]
B
Where, where is the walker? He needs. He needs more help than that. Yeah. But the flight attendants were delightful. And a flight attendant came and, like, took the bags from me.
- [48:51]
A
Yeah.
- [48:51]
B
Because she's an official person. Touching their stuff and putting it up, right?
- [48:55]
A
Yes.
- [48:55]
B
And then at the end of the flight, the flight attendant who helped them sit down was delightful and wonderful. And Wennie was sitting down. And she was sitting down. And their bags are put away. The flight attendant leans down and says, God bless you both. Like, it was like, I had feelings about how wonderful their experience was in this very challenging situation where, let me also say that the flight was delayed and JetBlue was very enthusiastic about getting back on schedule.
- [49:25]
A
Yeah.
- [49:25]
B
So for the flight attendants to be so patient.
- [49:28]
A
Yes.
- [49:29]
B
When like, they wanted to board this flight in 15 minutes, this full flight, it was truly wonderful to see.
- [49:36]
A
Boarding is always a hundred times better than deplaning. Boarding is always great deplaning. Usually not so much.
- [49:47]
B
So we're all. So this couple and I were sitting in row one. We're all sitting in the bulkhead. They're in one A through C, and I'm the only person in D through F. So the plane gets to the gate, stops, bing. I take off my seatbelt, I get all my own stuff down, get my cane in my hand, and this little old lady is, like, going to get down. This bag that I can see from the way it moves is very heavy. And I say, can I help you with that? And I don't touch her and I don't touch her stuff, but I do stand with my hands up in the air while she, like, I'm genuinely worried she's gonna, like, drop this bag and fall. And now I feel like I hovered in a way that was uncalled for because she did say, no, I can I. I've got it, dear.
- [50:42]
A
That's okay.
- [50:44]
B
I feel like I, like, I. I.
- [50:46]
A
Was worried about her.
- [50:47]
B
And I feel like that worry is the thing that gets people to do stuff that you don't Want.
- [50:53]
A
Yeah.
- [50:54]
B
I can see they're worried about you.
- [50:55]
A
Yeah. And she said, no.
- [50:58]
B
And I'm now emotionally attached to these.
- [51:00]
A
People, but she said, no, I can get a deer. And you went, okay. Okay.
- [51:06]
B
Yep. Cool. Good.
- [51:08]
A
Okay, well, see, there you go.
- [51:10]
B
And the way she, at the, like, as we're getting ready to, like, I'm getting ready to go. I'm sure they're gonna sit there and wait until everybody else is gone. But I'm the first person off that plane.
- [51:21]
A
You don't gotta wait for your care.
- [51:22]
B
And she says, have a wonderful rest of the year, dear.
- [51:26]
A
Oh.
- [51:29]
B
And I was like, you two, are you greeting me that way because you feel like your year is limited? Like, what's, what's, what's the emotion behind that? Oh, my God. Okay, so I.
- [51:42]
A
Was it New Year's?
- [51:43]
B
No, it was mid April. Oh, God. So, yeah, So I, I, I am putting myself in the position of maybe I went too far and exploring my internal experience that motivated me to maybe intervene too much. And it's my, like, worry about them and my care for people.
- [52:11]
A
Yeah. It's all well intentioned.
- [52:14]
B
Yeah.
- [52:15]
A
But. And you do sometimes intervene with me when I'm doing something too slowly because I'm in the chair. You're like, I'll just.
- [52:22]
B
Yeah. I'm an impatient bitch with you, though.
- [52:24]
A
Yeah. And that's, I get that. And I can be impatient right back. Like, just. Yeah.
- [52:28]
B
Like you, you tend to like, scoot at like a walking pace and I'm like half that. Bye. Bye. See you later.
- [52:40]
A
Yeah. Or if I'm like, struggling with a door and it's awkward because of like, the angle from the thing, you're like.
- [52:46]
B
Oh, I'll just open it sometimes. Yeah.
- [52:49]
A
Which is like a thing that I would rather people not do. But it's different because you're like, there with me and like.
- [52:55]
B
Yeah. And it happens again just because I'm there more of the time. Yeah.
- [52:59]
A
Yeah.
- [52:59]
B
You're just there more of the time.
- [53:00]
A
Exactly.
- [53:01]
B
Exactly. Yeah. But I will, I will let, I will wait until you ask next time.
- [53:06]
A
Let me struggle. Let me struggle, because I'm actually not struggling. I'm just doing what it takes and it just takes a little longer.
- [53:15]
B
Yeah. And I should, I should wait until you ask for help.
- [53:19]
A
Yeah.
- [53:19]
B
Instead of anticipating that I know what you want and need.
- [53:23]
A
Yeah.
- [53:24]
B
No, because mostly what you want is to, like, live your life independently, of course.
- [53:29]
A
Yeah. And I have to say, like, a lot of the, like, terrible frustrations I've had are because I'm having To confront the pac. The fact that people see me as needing help when I have a power chair so that I can be fully independent. And in those moments where I am not, where I have to gate check my chair and then I am stuck until I get my chair back, I am dependent on help at that moment, and I hate it. And that's a. That's a big part of why I'm extra touchy when it comes to those interactions in those places. I don't want to need help, but I require it. And that.
- [54:16]
B
Yeah.
- [54:16]
A
And then for people to make it even more difficult. Well, I just want to punch somebody in the face now.
- [54:22]
B
Yeah. There's a lot of feelings.
- [54:26]
A
There's a lot of feelings. But basically, if we follow these simple.
- [54:30]
B
Rules, don't touch people's shit.
- [54:33]
A
Ask first, listen to what they ask.
- [54:36]
B
If. If a person asks, help them specifically the way they ask for it and not the way you think.
- [54:43]
A
Yeah. And when it comes to using resources that are, you know, federally mandated to be available to people of different needs, you use the least minimum available to you that is accessible. Yeah. Yeah.
- [55:01]
B
Well, I have. This has been helpful, educational for me to remember to wait until you ask for help.
- [55:08]
A
Okay. If you don't, I know you're doing it not because you think I need help, but because you want to go and I'm in the way. So that's different. You're not trying to help me against my will. You're trying to go, trying to get this done, and I'm being too awkward and cumbersome because my fucking chair. Yeah.
- [55:27]
B
And usually the situation is like, the hallway is actually not as wide as it needs to be.
- [55:33]
A
Yeah.
- [55:34]
B
Like, this circumstance is like, the infrastructure available here is inadequate.
- [55:41]
A
Right.
- [55:41]
B
And I'm annoyed about that.
- [55:43]
A
Yeah.
- [55:44]
B
Like, I have stayed in wheelchair accessible rooms where the hallway for the door is five feet wide and there's a button that is correct.
- [55:54]
A
Yeah.
- [55:55]
B
And I like, I don't get in your way there.
- [55:57]
A
Right.
- [56:00]
B
So part of it is my feelings about, like, this is an inadequate situation. This is supposed to be an accessible room. What the fuck is this?
- [56:06]
A
Yeah. There's a lot of feelings, but I feel like this is a list of guidelines that people could refer to in the future and be like, what do I do in this situation?
- [56:17]
B
Now?
- [56:17]
A
I know it's actually really simple. And I've been a wheelchair user for three years now, so I feel like I've faced some of the bullshit in terms of human interaction.
- [56:30]
B
Uber drivers who are judgmental and are like, how come you can help me put this wheelchair into the trunk. When you are a user of this wheelchair.
- [56:42]
A
Yeah. The sentence that actually came out from that interaction was, how can you use that chair when you don't need it?
- [56:50]
B
Oh, fuck that guy.
- [56:52]
A
Yeah. That's when I had requested a silent ride, too.
- [56:57]
B
Yeah.
- [56:58]
A
Mm. Anyway, so in order to prevent anyone.
- [57:04]
B
Else ever from using that sentence, the answer is most wheelchair users are ambulatory.
- [57:10]
A
Yeah.
- [57:10]
B
They can walk. Some.
- [57:12]
A
Some of us can even lift 30, 40 pounds, no problem.
- [57:16]
B
A couple times a day.
- [57:17]
A
As long as we don't have to do much. Yeah. As long as we don't have to do much else.
- [57:21]
B
Yeah.
- [57:22]
A
As long as we structure our life around the. Okay. We don't need to get into all that. Yep. I just feel like we've had enough, like, a list of rules and guidelines for interaction so that if somebody's having problems, you can send this to somebody and be like.
- [57:34]
B
And I feel like we fully acknowledge the feelings that people who want to help are experiencing. They are benign, supportive, positive feelings. Mostly.
- [57:44]
A
Mostly.
- [57:45]
B
And. And just, like, rein it in. Help people the way they ask to be helped and don't help without their permission, period.
- [57:55]
A
Don't touch their aids. Yeah.
- [57:56]
B
Don't touch their stuff. It's like touching their body.
- [57:59]
A
Yeah. Okay, so that's it for this week.
- [58:04]
B
We did it.
- [58:05]
A
Yeah. Cool.
- [58:06]
B
I have no idea what we're going to do next, but we will talk to you next week. Cue the ukulele.
- [58:21]
A
Do not apologize to me. Just give me the like. Yeah, I know. I'm a big skull user, too. Enjoy. You know?