[Show Intro] Jala Hey, thanks for coming! I'm glad you're here. Come on in! Everyone's out on the patio right now. Looks like a couple of people are in the garden. I can't wait to introduce you! Can I get you anything? [turned away] Hey folks, our new guest is here! [Intro music] 00:00.12 Jala Hello world and welcome to Jala-chan's Place I'm your host Jala Prendes (she/her) and today I'm joined by Andy (he/him) and Suzie (she/her). How are you both doing today? 00:14.26 Suzie Them doing pretty good. How are you. 00:19.80 Jala I'm here I'm taking a big breath I'm sure everybody else kind of feels the same way. It's been a year 00:27.95 Andy Yeah, this is Andy I'm doing all right today. Yeah and I'm kind of in the same boat as you I would say. 00:35.17 Suzie Yeah I think we're all on the same boat like the the response is to say yeah I'm good and I'm like am I. 00:42.14 Jala Well, you know on this podcast. We don't actually go with like the social conventions we explore like all different kinds of things and we try to be open and honest. So if you're just like frazzled. It's fine it's fine I understand it's that's that's ah, being open about those kinds of things and actually receptive to talking about it is important. So so today. Wonderful listeners and co-hosts. We are talking about accessibility and also the concept of universal design. This is kind of following up from episode number 17 with Suzie where we were talking about disability and ableism of course accessibility is not just for disabled folks. It is a concern that is broad and. Goes to pretty much everybody like the concepts of universal design which I'm hoping we can talk about um to some interesting degree today are just you know the concept of it is just to make things easier for everybody and more um you know accessible for every single person regardless of their needs. So very important topic. So we'll start this podcast out with talking about what accessibility is in the first place so accessibility is defined as the practice of making information activities and or environments sensible. Meaningful and usable for as many people as possible again. It just means you you have the ability to do the thing. Whatever the thing is access the thing get the thing that you need so um, something that I hadn't thought a whole lot about because I don't have. Particular accessibility needs when it comes to the internet but like website accessibility is a big thing that's only more recently being addressed for folks who are visually impaired or you know use screen readers for 1 or another reason so we'll talk about that when we get to that section but do either of you have. 02:53.80 Jala Any kind of um thoughts or comments about just like that definition of accessibility like why is there accessibility important to you I will throw to Andy first. 03:06.30 Andy Well I think it's important because it's really the only way you can make sure you're including everyone in all these topics around diversity and equity and inclusion disability Unfortunately is usually one of the last like. Groups left out of that conversation. Um, so it's really just making sure that whatever you're offering to people you're offering to everyone and including everyone and putting thought to everyone's needs. 03:39.26 Jala Yeah, and why don't you tell the listeners if you don't mind like um how did you end up on this podcast about this topic. 03:45.37 Andy So yeah, sure So I think you had done your earlier podcast with Suzie or were talking about. You know, preparing for discussing those topics and I had followed you for a little while because of your association with the duck feed Podcast. Community So I was like well you know I'm interested in those topics too more specifically I work in a disability services office at a midsize public University and so my job involves meeting with new students to. Determine accommodations for them while they're at the college level and I'm also responsible for digital accessibility compliance and working with students to find assistive technology solutions to meet their Needs. So It's a topic that like not only is interesting to me. But it's like literally my job. 04:39.55 Jala Absolutely and Suzie how about you like why is accessibility important to you and how did you end up here. 04:41.78 Andy So when you got onto this topic. It seemed like a good fit. 04:54.73 Suzie Well, that's um, why is it important? Um, for me I have a lot of my own needs that aren't the norm so that developed into every. But does everybody else need because everybody's so different and how can we? How much can we do for it for everybody's Needs. Do you know what? I mean and I worked in a school with special needs. Children. 05:29.33 Suzie That's how I kind of ended up here with you talking to Suzie and through that I ended up here. 05:38.92 Jala Yeah, yeah, because you have also worked with folks who have different needs or you know, um, certain accessibility stuff certain communication requirements and. 05:50.46 Suzie Oh yeah, basically what Andy's doing except I was in a school for elementary school kids helping them figure out what kind of devices they need um, being an advocate for them when like. 06:08.20 Suzie Schools wanted to take the kids out of this special school and put them back in a regular government school and they would try anything to do that because they have to pay for those kids to be there. 06:19.63 Jala I Yeah and actually that's something that hits close to home because I have some family members who have small children who are in that situation right now where they're like oh well, they're doing great so they just need to be put back in the regular school and it's like no actually they. 06:33.79 Suzie Yeah, they would and they would evaluate these kids and talk about them in front of them and it really wasn't okay and I would stop them from doing that I'm like he can understand you because. 06:49.30 Suzie I was a paraprofessional assigned to a nonverbal autistic boy who was 5 and and so he couldn't talk and I'm like no, you don't talk about him in front of him like that he understands you. 07:00.43 Jala Well and then too I would imagine that it would be more difficult more challenging to work with elementary school aged. People who have different needs because they don't have the developed vocabulary of somebody who's been dealing with it for years and years like their whole life to tell you what they need. 07:20.82 Suzie Um, yes, yes, exactly and you have to in in that Situation. You're responsible for that child and and just seeing those. People do that like he's just a number. They just want to put him back in regular school because of the money and it's like sitting there having to prove that like yes, he still needs to be here. 07:43.90 Jala Yeah, you shouldn't have to qualify what your necessities are with something like that like oh you have to prove to me. You know that you need this thing like that's a lot of nonsense and we were talking about that too on the episode with Suzie. Because he is constantly. You are both are constantly having to try to qualify that um for listeners Suzie is married to Suzie so that is the relation there. So um, but yeah. 08:15.50 Andy Yeah, it's really unfortunate with ah school districts because they kind of have an incentive like Suzie was saying to not have students enrolled in special education programs. You know they are more costly. So oftentimes. Even for students with like lower or medium support needs if they're still like earning fees. They will consider that them still being successful rather than you know, developing an individualized education plan or a five zero four plan for that student which would you know support their needs better and. There's some districts that do a great job. But then there's others where it's just not so great. Unfortunately. 08:58.20 Jala Right? 1 thing that there is a recurring theme of in our society is um, people who do not have these needs trying to quote unquote fix and and. Everything like ah disabled folks situation like oh look they graduated out of this program and now they are just like everyone. No, they're not just like everyone else and their needs are not the same as everyone else's and to do that. Just. Ah, invalidates the experience of those you know the lived experience that these people have and to not believe the people who are living this you know situation is complete nonsense like that is not that is ah not helping anyone in any way. 09:44.91 Suzie It's it's enraging at times all the time. Yeah, like try not to get like angry. 09:45.30 Jala So all the time Let's be let's be honest, all the time. So oh well I'm I'm sure that we're all going to get frustrated because the next part of these notes talks about the different types of barriers. 10:04.75 Jala That disabled people face and this is important to talk about because folks who do not have these kinds of challenges need to be aware of this because the face of ableism is very multifaceted so ah, transitioning over to that One of the first barriers. In this discussion is attitudinal barriers that is stereotypes assuming that a disabled person has a poor quality of life or is unhealthy because of their disability and stigma prejudice and discrimination people may see disability as a personal tragedy. As something that needs to be cured or prevented and as punishment for wrongdoing like you know well God made you that or whatever or as an indication of the lack of ability to behave as expected in Society. So. Ah, this is personal personal ableism These are people having these preformed notions because of a lot of times I find not even personal experience with disabled folks just like learning from their parents or from Society. You know, oh well. This is the overarching attitude that people have about this thing and therefore that's just what they inherit and don't question. 11:27.79 Andy Fresh, um, for sure. Lots of thoughts I mean myself growing up, you know, even though my uncle has ah some profound disabilities like I was taught you know don't. Look at people with disabilities which you know you obviously don't want to stare at people but at the same time not viewing them as making them Invisible. You know, purposefully not looking at someone as basically what I was taught and that's not healthy. You know so. Yeah, and another thought too I think in your previous and episode on ah disability and ableism you and Suzie had talked about kind of the concept of inspiration porn and like poster children for like um, you know, inspiring stories about people, overcoming disabilities and I think it's worth. Touching on that subject here a little bit because you know these stigmas or prejudices can also be in the form of things that maybe are ostensibly more positive like but when you really drill down. Um, past that you know well-meaning people. Making mistakes or mistaking stories about disabled people overcoming adversity is like having happy Endings whereas in reality the stories are often revealing like a systemic problem that really hasn't been Addressed. You know people with disabilities wouldn't have to be triumphing over things all the time if. 12:57.23 Andy We would just remove some of the barriers to their inclusion and access. 13:02.77 Jala Absolutely that is absolutely something that I feel like we need to underline several times. Um, you know it's It's like ok. They are missing the forest for the trees right? they're they're looking at the oh hey this person overcame rather than going. Oh hey, there's a larger larger issue here that isn't being addressed that this person has to struggle through and overcome because all of these barriers are placed up in front of them. 13:30.53 Suzie Um, barriers for me I've I've had ppd I have Pm Dd post. It's like I forget Pm Dd look it up. Um. 13:44.90 Suzie And I started having severe panic attacks like I went to the E The Er and the um the nurse practitioner thought I was trying to score drugs right? off the bat I'm literally just having a pan attack. Panic Attack I'm throwing up in their office and she's like I can only give you so and so and I'm like I already have that I need something more. She's like well I can't give you anything more and then she gave me a leaflet and directions to the like drug rehabilitation center and. 14:23.64 Suzie And I'm literally in a panic attack I can't think I don't know what's going on so I drove over there I don't know why it's just one of those things you know I was having a panic attack and I get there and there's druggies on the sidewalk. There's people doing drugs like. 14:24.69 Andy That's awful. 14:41.53 Suzie Bright next to where I parked and I'm like what the fuck is this place I thought she sent me somewhere to like help me before I realized what happened and then I had to go to the ah er another er where I sat there for 3 hours and they wouldn't help me so I had to go to another yeah er. 14:59.99 Suzie And that doctor thought I was trying to score and he just sue the drugs at me and I never saw him again. They left me in the Er room. They wouldn't let Suzie come in because of the stupid Covid crap I was just left in there. 15:13.39 Jala Pmdd is premenstrual dysmorphic disorder I did in fact Google it while you were talking. So um, yeah, that's ah. 15:16.60 Suzie Thank you. 15:26.16 Jala Oversight neglect and various other issues with the medical medical community medical treatment in our country that's like ah ah, definitely a chronic issue for everyone Every single person. 15:40.89 Suzie Yeah, everyone and mental illness is even harder because people don't see it and when they do you're quote unquote crazy. 15:50.60 Jala Yeah, yeah, like the mental health ah still has so far to go before we are anywhere I mean there's also the fact that if you need something like a therapist a lot of insurances do not cover that or they have a very limited extent to which they will cover that and. You know they require diagnoses which can also lead to you being discriminated against in the workplace and all different kinds of things and even to just get accommodations in the workplace. You do have to have a diagnosis. They won't just take you on your word that your experience is x. And again like those diagnoses can lead to even law issues say. For example, if you are in the middle of a divorce for some reason and you have kids and you have some kind of a diagnosis that can be basis for the court to take your kids away from you in the divorce. As just 1 sample of different ways that these prejudices affect people. So. 16:54.44 Andy Yeah, and even just in the language we use like truth be told I'd really try my best but negative language or words that have mental health roots are still the ones that have been like the hardest for me to weed out of like ablest language that I learned growing Up. So. I Mean it's very embedded in our society to just stigmatize people with mental health concerns various kinds. 17:21.79 Jala Absolutely And mental Health things are a large way in which the medical community has Justified. You know that and racism and sexism and stuff are all ways that the medical community has justified doing human. Human experiments on people. So um, definitely ableist. Language is something that is very difficult because in a lot of cases. People are wholly unaware of the original origin you know like the origins of where this. 17:57.32 Jala Phrase or whatever came from or how it relates to mental health stuff so that makes it even harder. Um moving along. We'll talk about communication barriers So different types of communication problems. 18:15.15 Jala Written health promotion messages with barriers that prevent people with vision impairments from receiving the message this include use of small print or no large print versions of material. No braille or versions for people who use screen readers. Auditory Health messages may also be inaccessible to people with hearing impairments including videos that don't have captions oral communications without accompanying manual interpretations such as asl american sign language and the use of technical language long sentences. And words with many syllables. Those may also prevent ah people from understanding because of cognitive impairments. So there's just like a large number, especially like ah technical language long sentences words with many syllables. We're just talking like. Lots of that is just medical community stuff right there so you know and especially since doctors are basically given a time limit of how long they can spend with any particular patient. So but are there other ways in which you guys have seen. 19:26.19 Jala Communication barriers obviously Suzie with the kid that you were assigned to back when you were working at the school that communication barriers were very big because that was a nonverbal kid. 19:38.56 Suzie Yes I signed with him He had very he had like a ah like a tablet you know and it had a table chair bathroom so he would also communicate in that way. And but we mostly signed. 19:56.35 Andy Yeah, and something more personal for me my own kiddo is autistic and she is verbal but there are times where if she's Overwhelmed. She'll be less verbal or nonverbal and outwardly. That can look like to school professionals like she's being defiant or belligerent and so she can sometimes get into situations where she is being held accountable for things that are really outside her control and you know more broadly. Like on a social level this is where we have problems between law enforcement and people with various kinds of disabilities where there's a communication breakdown of any kind really in a high stakes situation. 20:49.13 Suzie Absolutely completely agree. 20:52.20 Jala Yeah, and how how many times are the situations that come up on the news of like of course race related. But also you know there have been quite a number of cases that have been pretty high profile situations where it's somebody who has. 21:09.95 Jala You know some kind of a disability and they were just treated as if you know they were being defiant as you say and it's like nope nope they just they have different needs and you are not communicating with them properly. So. Moving right? Along. We've got physical barriers so physical barriers such as steps and curbs that block a person with mobility impairment from entering a building or using a sidewalk lack of manual space or maneuverable space for wheelchairs and other assistive equipment and. Worst of all and very prominent assumption of immobility. Um I just saw something from Sophie J Butler on Instagram today that was talking about. Um how she had her wheelchair damaged during like a flight and. She sued in and said it's assault because assault on someone's assistive device is assault on their person you know because they are one and the same they are a unit this is not you know something that they are. 22:20.75 Jala You know, opting to sit in like a chair that somebody who does not have a mobility issue is sitting in and then they get up and walk away. They need that device and also situations where folks who have mobility issues um have been ah, forced to crawl. To a bathroom on a plane or who actually died because they were not given assistance by someone else who assumed things about them and you know that kind of a situation. So um. That that's super super rage inducing but I'll have to share a link to that So you guys can see that post. 23:02.22 Andy Yeah, and Airlines do that all the time to folks who use wheelchairs. It's it's wild. 23:10.91 Jala Yeah, the fact that it is so prevalent and prominent. So here I'll share this Link. You guys won't be able to see it till later because it'll be in the discord but you know anyway, it'll be there for you to take a look at later. And I will be sure to put it in the show notes as well. So Everybody else can see the same thing So any other stuff that folks have to say about physical barriers. 23:40.91 Andy Um, just 1 thing that has come up where I work and I think most people who work in multi-story buildings know you know that when there's an emergency the elevators go out of service. 23:55.22 Andy So for folks who have mobility issues or who use wheelchairs or any mobility aids. Um, usually the guidance for them is to go to a stairwell which is deemed an area of assistance where they are supposed to wait. 24:13.53 Andy Well, the building is burning until a firefighter comes to rescue them there. There is like equipment now that's been designed to um oh what's the word ah move a person from out of their mobility device. Like a wheelchair into an escape chair I can't think of what it's called, but it's basically a device that you can use to anyone that is you know, fairly strong can basically safely get a person downstairs if they have a mobility. Um I. Issue. Um, but most buildings don't have those so in the end most folks right? exactly they can be forgotten there. You know what? if the the emergency call button that's supposed to be in those stairwells isn't there or it isn't working you know. 24:56.26 Suzie And what if the person's alone. 24:59.30 Jala Yeah. 25:11.91 Andy It's a scary situation. 25:12.31 Jala Absolutely absolutely and the whole like all of the mobility stuff. It. Also another thing I don't remember if I mentioned it on the last episode or not I've slept since then but something that is very prevalent. Is in a public restroom people will just use the accessible stall just because it's bigger and it's convenient, but ah, that means that if somebody who needs that stall. Comes into the restroom. There's only ever one of those if there is 1 at all. Sometimes there really isn't even that so you know if you're taking up that stall then you are essentially just like more or less parking in the accessible parking spot. You know. 26:03.63 Jala You are taking up that resource which is there not for you. But for the person who needs that because of their accessibility needs you know and that's something that happens in the office building where I work all the time There is a lady who has a cane who always uses that particular stall and so often. 26:23.15 Jala When I roll up on the bathroom I see that the accessible stall is being taken by somebody who does not need it so that is a very small to a lot of people thing but it's a very big thing that causes a lot of anxiety for folks who have mobility issues. Who have to go somewhere in public like they have to plan out. Okay can I leave the house for more than 2 hours you know or less depending upon you know, like what other you know, physical needs. They might have you know they might need to use the restroom more and if there's no accessible stall available to them then what are they supposed to do. 27:00.30 Jala So so that's one way to not be an ableist Asshole Don't use the freaking accessible stall in the restroom because that's there for someone else. Not for you unless you have an accessibility requirement. So. 27:12.17 Suzie And imagine if these people were inconvenienced. 27:18.34 Jala Yeah, yeah, the people who are using the accessible stall when they should not be if they were inconvenienced in any way and Lord forbid. You know they be having to wait until somebody else gets out of ah one of the stalls. So so. Moving right? Along. We've got policy barriers so denying qualified individuals with disabilities the opportunity to participate in or benefit from federally funded programs services or other benefits and we talked about that on the episode with Suzie because Suzie has to fight. All the time about this this policy stuff denying individuals with disabilities access to programs services benefits or opportunities to participate as a result of physical barriers which again that means like the buildings wherein these services or whatever are are not accessible. To someone with physical needs. So um and denying reasonable accommodations to qualified individuals with disabilities so they can perform the essential functions of the job for which they have applied or have been hired to perform so again, that's like in the workplace if somebody who. Has an accessibility need is not provided that thing that they need to do their job and that's something that's always a fight because companies don't want to have to pay for those accessibility things and. 28:45.48 Andy And each of those bullet points is basically a violation of the Americans with disabilities act. So unfortunately though they happen all the time. 28:56.70 Jala And and and part of the part of the reason for that is because you can try to sue them but you have to have money to hire a lawyer to sue somebody and time and energy and whatever and we talked about the Spoon theory on the episode with Suzie about the. 28:56.13 Suzie All the time all the time. 29:15.55 Jala Ah, energy reserves that a disabled person has that are automatically just like things are are more draining for them than for people who do not have those situations. So um, you know like there's so many different ways and then of course we talked about how 27% of adults with disabilities are in poverty like at at or below poverty level in America. So obviously they do not have the ability huh. 29:41.16 Andy Again as a result of policy sorry I didn't mean to talk over you but again, that's as a result of policy in many ways. Yeah. 29:50.68 Jala Ah, mm absolutely and they obviously do not have the ability the energy the resources to do the suing that needs to happen to get the Ada compliance going. 30:00.52 Suzie Is trying to sue somebody or a company or the sheriff's office. Um, it's so insanely expensive and if they don't harm you enough then you it's There's the spoons. There's. Too many. They need it. The spoons. There's too many spoons you need and you don't have enough spoons. 30:24.40 Jala No, no, no. 30:24.72 Andy Yeah, it comes down to kind of picking your battles and it that's a bad place to be in. 30:31.86 Suzie Yeah, it really is. It's really shitty for these people who don't know you who have no qualifications Besides you know, being a doctor in Suzie's case and having to prove over and over again to these people who. 30:51.44 Suzie Have no idea ah of the medical part for Suzie have having them tell you no you don't need that I mean I've tried tried to call the Governor's office and they're like this is just the way it is click. 31:09.32 Jala Yeah, yeah, and because there are like the government itself is not super big on obviously um, not just that particular instance but overall historically has not been great about. 31:10.31 Suzie Can't do anything. 31:27.40 Jala Um, you know doing much to stand up for disabled folks' rights well and then too like how do you get the sway of politicians you form a lobby you give them money. Well guess what. 31:30.63 Suzie Well, it'll cost them money instead of them getting money. So. 31:44.27 Jala So Many people who are disabled are on the poverty line they they are below it like they do not have the funds or the resources or the spoons or whatever to do all of that you know so ah disability advocacy on a larger like national scale. Not just for yourself and your family but also for like society at large is such a draining thing for folks who are disabled that you know it's It's so so much you know it's It's a very hard battle to fight. 32:20.14 Jala Especially when every and disabled person has their own individual story and their own individual needs and even people with the same disability have different requirements. They have different levels of need. So it's not. 32:35.70 Suzie Everybody's different. 32:36.49 Jala It's not a cookie cutter kind of answer like oh yeah to make things you know accessible for folks, we just need to do this one simple trick. You know it's not that easy. 32:43.20 Suzie Yeah there's tons of variables. It's I remember 1 of my first jobs was retail and one of the things was in the like ada compliance like make sure. That wheelchairs can go through these areas and I would always make sure because I'm like how crappy would that be trying to like shop and like I can't take myself through where I need to go so I always made sure that that those people could do that because that's. 33:15.71 Suzie Like crappy and even parents with strollers just having the accessibility is it's ah it's just always been like kind of a passion of mine. So. 33:26.22 Jala Yeah, and that's that's really needed in this society. Overall there needs to be like more awareness of the needs of other folks and more consideration of those needs. So that's kind of like why we're talking about this in. In spending like an entire episode just discussing the accessibility part of it because um, there's a lot of work that everyone needs to do insofar as like self-education and ableism and trying to unlearn all of the different aspects of that. And you know having the compassion for folks and all of that but like accessibility is a place to start to become aware of those needs and to become more considerate of folks who have different needs from you. So. Moving right? along with the barriers because there's so there's still so many more that we've got to talk about this is Liz. Oh. There's so many Um so programmatic barriers so inconvenient scheduling. 34:28.37 Suzie There's a lot of them. There's. 34:35.82 Jala Lack of accessible equipment such as mammography screening equipment that doesn't require someone to stand up because Mammographies I know because I have to get mammograms all the time now. Um because I am old So like you have to stand up. And they have to squish your booby into a thing and then squish it in between some plates and you have to press your body up in this really super uncomfortable position I cannot even imagine how in the hell somebody who has a mobility problem would deal with all of that because that is a lot. 35:07.72 Suzie Wait how old are you I'm 36 once you get your first mammogram really. 35:11.42 Jala I'm 40 once you hit 40 you have to have um, an annual mammogram and um, also since I've had cancer a couple of times girly cancer a couple of times I've been having to have them for a while now. So. 35:28.11 Suzie Gotcha Gotcha gotcha. 35:30.82 Jala Yeah, so moving right? along with programmatic barriers. So you've got insufficient times set aside for medical examination and procedures because again like ah doctors have like ah a little egg timer with them wherever they go more or less and they have a certain amount of time they have to be in there and um. You know if you have somebody with accessibility needs. You need to spend more time with them and that's not happening. That's not being accommodated little to no communication with patients or participants and providers attitudes knowledge and understanding of people with disabilities just is lacking. It is not there. And Suzie take it away like you know that. 36:12.20 Suzie Ah, um, woo where where do I start Gosh I mean I already talked about when I had the panic attack and how those doctors treated me. Um when I had my daughter. 36:25.98 Suzie Was a transfer from a freestanding Birth Center I had meconium in my waters and being a freestanding birth center. They have liability issues. They don't like if my daughter were to aspirate on the meconium. They don't have what you need so they transferred me to the hospital. Everything was fine. Gave birth to her fine. She was fine the next morning I want to leave at the birth center I was supposed to be there 6 hours after giving birth and then I leave my doctor said you're good to go. You're fine. Well the pediatrician got mad at me because I was like I want to leave and he's like you have to stay here two days I'm like. No, that's okay, I'm good. My daughter's good. Give me my Ama for my daughter and we'll leave he immediately called cps on me because I didn't agree with him immediately. The nurses. There were great. They're like we're getting you out of here as soon as possible. 37:21.45 Suzie Because I got the Ama but he's still called cps on me and I'm walking out like 15 hours after giving birth I'm holding the bucket car seat I'm bleeding and I'm trying to get to my fucking car and the cpa cps lady stops me. And ah she asked me some questions she looks at me she looks at our car which was just a van a nice van nothing fancy in that our kids are dressed and I can tell she's like calculating based on how we look what kind of car we have and how we carry ourselves. And I'm like if we add some piece of shit car and we didn't look how we looked she would be she would be like trying to take our kid from us probably. 38:08.81 Jala Yeah, and if you were a person of color. Absolutely absolutely Oh Okay, okay. 38:12.75 Suzie But she she happened to be a person of color. Ironically, if you know anything about cps and people of color you look into that. But yeah, that was and that that triggered my postpartum depression. 38:32.30 Suzie Because I was in flight or fight mode. They had guards outside my room guards because a healthy mom and a healthy baby wanted to leave my midwives stuck up for me the O B G y n that was um. 38:42.25 Jala Wow. 38:51.96 Suzie Ah, the head of his freestanding Birth Center in Tennessee you have to have that doctor the obg y n and then he can have his midwifes under him so that ob bgy n stepped in for me and stood up for me and that was like really amazing of him. He was from the Philippines so he was an american so. 39:14.36 Andy Oh good and I'm glad someone did and unfortunately it so often comes to an advocate stepping in which is ridiculous. You know because you were saying the same things but because he's a doctor and a colleague they're going to listen to him more than your own. 39:31.30 Suzie Yeah, and then I was a transfer to so they're like oh you know she had to transfer look at Ha you had to give birth in a hospital which was. 39:33.00 Andy You know, personal narrative you know, um. 39:44.84 Jala Well and and they are not allowed to hold you against your will at the hospital. So the fact that they put guards outside your room and did all this stuff is just mind blowing. 39:59.75 Suzie Yeah, and what can I do I can't do anything Suzie couldn't do anything like he didn't tell me till after the fact that there were guards outside my room. Yeah because I didn't know and I'm there I'm in Tennessee my family's in California. 40:11.19 Jala Wow. Well I mean well support network. 40:19.30 Suzie So like I don't have that you know help? Yeah, just there and then worrying about cps or the cops showing up at my house because I had to agree to go the next morning to the um. Like the well check appointment for my daughter because in Tennessee they have to get that heel prick for the blood test and if you don't do that. It's a felony. Yeah so I had to go and agree to go do that. 40:57.54 Suzie Put my daughter through that which I didn't want to do and if I didn't do that they were going to call the cops. So this is like all within like 27 hours of fucking giving birth. 41:11.81 Jala Yeah, and like that is that is just way too much to have to be handling all at the same time and you mentioned Postpartum depression and I'm sure that was ah also not helping anything. 41:12.92 Andy That's a lot. 41:25.85 Suzie No, and and like that that 1 thing with that pediatrician just skyrocket. That's that's the cause of how deep it went and I mean like that was years of doing that and. 41:45.11 Suzie Years of therapy and medication and all of that. 41:47.77 Jala Well, that was a very traumatic situation that they put you through right? after your body just had a very traumatic situation. So yeah. 41:54.14 Andy Nothing. Yeah, well. 41:59.87 Suzie So I don't like I don't like the middle I don't like hospitals or the medical community very much like. 42:07.74 Jala Ah, understandably, um, you have a whole lot of personal history and history via Suzie's situation to discuss. So. 42:15.54 Suzie Oh yeah, that I mean I had to start he he was Out. You know he was under and I had to like advocate for him and it was like insane. It was just crazy like would just the stuff. They're willing to let a spouse decide I'm like no don't ask me, ask him like why are you asking me and later the doctor. Ah. 42:50.51 Suzie Ah, actually agreed with me that I was right? which was astounding to me because he was like you know gray hair older. So I was like Wow good for you old man. 42:56.39 Jala Yeah. Yeah, well when my mom like I've talked about this on other podcasts. But last year my mom fell and broke her hip. This is the second hip that she broke and it was a very long. 43:16.32 Jala Long process. She has osteoporosis and rheumatoid Arthritis She has very brittle bones. She actually broke her leg very close to the socket ball and socket joint in the hip and so they ended up having to replace the entire hip complex. Ah, because of just where the brake was in the fact that her bones are so Brittle. So um, that was a very major surgery and this was the second second time she had the other hip replaced a few years before when she fell a different time and so. 43:49.90 Jala Anyway, it was a very long surgery and they put her under and then the same week they found out that she had a distended gallbladder and they had to also do another surgery for that and so the Anesthesia had messed her up good for like weeks and um, if. 43:55.43 Andy Wow. 44:00.26 Suzie Oh boy. 44:04.73 Jala Y'all didn't know this when you have an older person. They they have a pretty high risk when they go under Anesthesia of just not ever coming out of that that ah state of being completely confused in stuff and because there is a history like ah my grandmother had alzheimer's. 44:24.23 Jala Um, my entire family panicked when she was still having the effects of that anesthesia like two weeks later and it can last for up to a month before going away and then like you know them coming back to normal. But also there are times where they just don't. Ever come back from that and it was terrifying everybody and here's me trying to hold everything together work full time and then ah deal with my dad and my sister and all the rest of them my my aunt and all the rest of my family all falling apart and. 44:44.43 Suzie Wow. 45:01.30 Jala Trying to advocate for her and everything and I know um Suzie I know you know how all of that is ah you know in your own situation but in a lot of that the people at the hospital were talking to me or talking as if my mom was not there and my mom was 100% like once she was back. From the anesthesia she was there 100% and before that she was in and out so like there were times where she was lucid. It wasn't 100 % her just being off somewhere and they just did not even address her did not look at her. They talked to me and that's like that's also the same thing that happens to folks who are disabled and my mom is is. Also disabled. Um, but either way, um, this happens to all different kinds of disabled folks where people don't address them. They address the caretaker or the assistant personal assistant or whatever of that person rather than talking directly to them. And you know acting like they're not even there and you know that's completely terrible and you know just like asking the other person asking like the the caretaker or the assistant the whatever the questions it's like no address your questions to the person to whom they apply. 46:03.55 Suzie Awful. 46:16.48 Suzie Absolutely agree. 46:18.61 Andy Yeah, yeah, people with disabilities are so frequently infantilized unfortunately and so you know ultimately their friends and family members are either like um, their best advocates or their worst enemies. You know. So. 46:36.19 Andy You know and now when this is going on this. You know further deep in the level of disability that they're experiencing or you know the the health impacts that they're experiencing as a result so it's really it's a scary situation. Um like my. My father-in-law recently had been hospitalized and he took on Hospital delirium which is something I was completely unfamiliar with but apparently half of older folks can acquire hospital delirium while they're in the hospital and. You know there were times where he was very lucid and then there were other times where it was just heartbreaking you know and so throughout though you know thankfully he worked with a good team who addressed him for the most part but you could also tell that any serious conversations they had they wanted to make sure that his family was around. But if he didn't have like a strong support system or he had crummy family members or you know you know anything different than what he had. You know he could have ended up in a worse place than he did you know so the you're the way that. People with disabilities people with mental health concerns people who have you know serious but temporary health issues can be so um, overwhelmed by and have their rights and autonomy taken away by the medical and. 48:11.95 Andy Legal system is pretty scary. Yeah yeah. 48:13.83 Suzie Yeah, yeah, it really is. 48:15.97 Jala Absolutely absolutely and you know ah to clarify both of my parents are disabled. They are on disability and you know they they. Have that situation and I live with them and I am you know effectively their caretaker assistant type person. Um, so that is my situation I don't I don't think a lot of times I don't I don't think about them in terms of them being disabled. Only really because they weren't always disabled so it's like you know a brain shift that sometimes I forget to make like actually know they are Disabled. You know like. 49:00.13 Suzie I had to I had to do that or come to a I can't think of the word. Ah like I was kind of like in a denial because I was like no, you're. 49:12.73 Jala Yeah, you had to come to accept it. 49:16.96 Suzie Yeah, because I was never like it was just like oh oh my God like you are disabled and that's okay. 49:23.34 Jala Yeah, and I think yeah and I think that that I'm not sure but I believe in the episode with Suzie he had mentioned that that there was just like a day that you turned to him and was just like you're disabled and like it was just kind of like. Oh yeah, that is the situation Now you know and. 49:44.44 Suzie Yeah, and it's like it was so like because when the situation happened I'm just like go go go go go like make make sure I'm there. Everything's like going okay as possible and then it's like we get home and I'm just like like. 50:02.10 Suzie I didn't want to like admit it because it's it's sad and that's a lot but when I did I was like oh dude I'm sorry like I'm here now like I'm more understanding and. 50:19.97 Andy Well it is like you have to recalibrate your ah whole world. So at the very least it's like ah like an adjustment of how you view the world or how you view that person and the way you interact with them. But you know it's also kind of like an identity crisis at a certain point where you kind of have to. 50:38.37 Andy Incorporate a disability identity into your overall Persona you know and that everyone's going to come to that in a different way through a different process and it it complicates the whole matter for sure on top of dealing with whatever it is. You're dealing with you then also have to. 50:50.94 Suzie Oh oh. Yeah I was pregnant too when that when the accident happened I was Eleven weeks pregnant with our fourth kid. So I'm like oh shit like I'm gonna have to fucking go get a job because I'm a stay at home. Bomb not that I don't work but I'm gonna have to like. 50:56.74 Andy Kind of mentally process everything too. Wow Yeah, wow. 51:15.14 Suzie Go to one where I make money and I'm just like fuck. What do I like ah like it was just crazy. 51:19.90 Jala New So and see that word crazy crazy and insane. You've been using those a lot those are ableist as hell you should stop doing that thing but it's--I understand what you mean. 51:29.61 Suzie It was crazy though it was it was a crazy situation. But. 51:38.62 Jala Um, but those those 2 words are used way too much. But anyway, that's not the point. Um, yeah, yeah, either way either way? Um, yeah, part of the reason I don't use the word disabled very often at least when I'm talking about the situations with my folks is because my mom knows she's disabled. She's fine with that label. 51:41.66 Suzie I Know what you mean I get I got you. 51:57.96 Jala My dad ah does not like that label he is kind of in denial and has never come to grips with it and if I put that label on him. What'll happen is then he'll try too hard and hurt himself So I have to be really careful about the way that I frame it because I have to be. 52:05.00 Suzie Gotcha. 52:16.94 Jala Ah, sensitive to their preferences. So but anyway ah moving right along with other barriers. So we've got social barriers people with disabilities are far less likely to be employed so in 2017 35.5 of people with disabilities. Ah, between the ages of 18 and 64 were employed whereas 76.5 of people without disabilities were employed so about double that of people with disabilities were employed during that timeframe and adults aged. 18 or older with disabilities are less likely to have completed high school compared to their peers. So 22.3 compared to 10.1 so that's rough and people with disabilities are also more likely to have incomes of less than $15000 compared to people without disabilities so people with that income range who are disabled. 22.3 compared to 7.3% of non-disabled individuals so children with disabilities are also almost 4 times more likely to experience violence than children without disabilities. 53:39.21 Jala And I can say to you again. Family member that I have who is a child was bullied in school. At one point they used the word autistic as a slur and slammed the laptop down on the Kiddo's fingers and and we're bullying. 53:58.82 Jala Bullying them that Way. So ah, yeah, terrible and so it's it's violence Iss not just violence from other children. It's also violence from adults towards kids who are disabled because they get frustrated with them ah or whatever like I I know there have been at least a couple of cases recently on the news here. About um there was a kid who was found starved in a closet or whatever and it happened to be a kid who had a disability and the parent just got frustrated with them and or like like a mental disability or something and the the parent just got frustrated and you know shoved them in a closet and left them. There. 54:37.57 Jala And stuff like that. It's heartbreaking absolutely heartbreaking and terrible. It's dehumanizing. It's 100% dehumanizing and you know people who with disabilities need to be treated with the same respect as other people and they're not so. 54:40.80 Suzie It's It's so sad. Yeah. 54:55.29 Jala Anything else. Anybody has about social disabilities. 55:03.54 Jala I'll call that a no, we'll move on trent. No problem. But. 55:05.62 Suzie I'm I I do have a HD so my brain's kind of like wo sometimes and I'm actually on to changing medications right now. So it's a little extra. Yeah, so. 55:16.41 Jala Oh wow so it's even more difficult. Yeah yeah, and Medications Medications um you know that whole transitioning of medications thing needs to be something that is better accommodated to because. 55:18.27 Andy Good luck with that process. It's always yeah. 55:21.41 Suzie Thank you. 55:32.90 Jala When when folks are transitioning their medications or trying to find their right dosages and stuff that messes with everybody's you know everybody who is having that situation's brains you know in such a way like their brains their bodies. Everything their focus is different and until they get it. 55:48.20 Jala All ired out like they need to have some some grace extended to them. So yep. 55:53.26 Andy For sure. Yeah, the the 1 thing I just thought was while you were talking about the social barriers. You know the far less likely to be employed if you are employed. You're probably underemployed and then if you have a profound. Ah. Intellectual or developmental disability. You can be paid less than minimum wage and still be legally hired to work so there's that thing too? Um, yeah, so it's again these things are. 56:18.67 Suzie That's disgusting. 56:27.98 Andy Woven into the fabric of our society through policy law tradition and it's just so endemic. 56:36.34 Jala You know and you know we were ah Suzie had mentioned it previously on the the other episode but ah also forced sterilization. That's. 56:47.53 Jala Something that they are still able to do to disabled folks to this day. 56:55.49 Suzie Like I'm sure I know that somewhere in the history of everything I've learned but geez. 57:02.38 Jala Well and then two part of the whole RoeVWade concerns which there's so many about that. Um, you know like I for one I have had cancer and my girly bits have been chopped up into pieces and I cannot physically. 57:17.51 Jala Carry a baby to term. So if I ever got pregnant and was forced to have that child then that would mean my life would be in danger and also that child would not live either. So um, yeah, that's a situation for me. So that's a personal very personal concern about that. 57:32.42 Suzie I'm so sorry. 57:35.32 Jala But ah, folks who have disabilities sometimes those disabilities will um obviously affect the birthing process and can be an issue for those folks so you know that doesn't mean they need to be for sterilized. But that means that they need to have the you know have the. Medical care. They require you know. 57:55.20 Suzie Yeah I'm I'm also a postpartum doula and a dua so that has to do with taking care of families pre birthr after birth all of that So and a very big advocacy for anybody who's having a baby. 58:12.10 Jala Um, yeah, yeah, yeah, yeah, so everybody's situations are different and I find that um, a lot of what we're seeing with policy in this country is. 58:13.78 Suzie No matter what. 58:27.90 Jala People who don't are who are like very far away from that situation are the ones who are making these decisions and saying no, that's not something that we need because I don't believe in it and it's because they never have to confront it or deal with it and they don't know any you know like they don't know anything they're they're out of touch with the folks who do. 58:39.52 Suzie Or they yeah are yeah or they have the money to facilitate themselves. Yeah. 58:49.41 Jala Sweeping it under the rug and doing what they want anyway. Regardless of what the law says. Yes, so. 58:52.89 Andy Yeah, and I mean in the Deaf Community. There's many deaf parents who you know hope that their child will be born deaf and may you know even intentionally choose a partner who has a similar genetic quality as them that would produce a deaf child and you know there's. There's people in the hearing community who would view that as atrocious but like that's a cultural thing and you know just because a person is deaf doesn't mean that they can't contribute but it just speaks to this whole medical model of disability that you know. 59:17.41 Jala Yeah. 59:17.52 Suzie Oh absolutely. Yeah. 59:31.90 Andy If You have a disability or diagnosis or you know learning difference of some kind you are in some way flawed and yeah, it's just rather than the social model which says that you know disability is created by the various. Barriers that policies like these create. So it's It's just there's so much concern about people's birthing and who they choose to have children with and what those children will be like and it's you know. Personal choices usually last on the list for a lot of people's consideration I guess. 01:00:09.38 Jala Listen. Yeah, and then two It's not all of the world that does this consistently or anything It is specifically the Western view of this and you know like there are various other cultures current and previous. 01:00:33.41 Jala That exist or existed that you know folks with disabilities were just you know part of the society and they just had a different job than this other person and it didn't make a difference. They were very you know they were just treated the same they were given you know a productive role in the society and it wasn't a big deal. It It becomes a big deal when you start to throw up the barriers and point at it and whatever and and other people and the thing is is that in our society people with disabilities are othered constantly and because ah that is a mode. 01:01:11.15 Jala From which one can produce fear and from fear comes hate and all of that you get a really nasty cycle that goes so moving along with Barriers. We've got transportation Barriers So lack of access to Accessible. Or convenient transportation for people who are not able to drive because of vision or cognitive impairments public transportation may be unavailable or inconvenient or at inconvenient distances or locations. Of course. There's also. The lack of the accessible parking spot because some azjack decided to you know, take that spot. There's financial barriers So 27% of disabled adults live at or below the poverty line as we mentioned Previously. Financial is a big deal because again, there's lots and lots of discrimination against folks with disabilities despite the you know Americans with disabilities Act. And so you know if you are employed and disabled. You probably are Underemployed. You are probably underpaid and so on and so forth at Infinitum We've kind of covered all of those here's the one that I I mentioned at the top of the episode that we haven't gotten to yet technical logical. 01:02:33.81 Jala Barriers so tech not being designed with disabled users in mind this can be any number of types of equipment but it also pertains to the internet web design is only more recently starting to catch up with universal design principle which we'll talk about in a little bit some common accessibility issues. With web design include inappropriately coded navigation links that screen readers cannot detect data tables not being coded for screen readers in sufficient color contrast in accurate or absent alt text for images and I will add a note in there I have been trying. Remember to put the alt text in whenever I post pictures to the internet and it is it is more recent that I've been making this concerted effort but like not every platform has it in an easily easy to see remember spot. Like Mastodon because it has like ah the spot already like open and ready just for you to fill in and it's easy to remember there but there's lots of other places where that's harder to get to or or you know like out of the way and you just don't see it. When you're trying to post something but I am trying to get better about doing that anyway. Um, no logical sequence in focus of interactive elements which of course if you have a cognitive thing like the lack of logic there makes it hard to understand what's going on on the page missing web. 01:04:05.76 Jala Accessibility initiative accessible rich internet applications attributes. That's a mouthful. It's Wa I dash a r I a ah dynamic content with features like drag and drop or pop-up windows. Can be disorienting to the blind and those with visual impairments as they appear without a screen reader announcement. So these drag and drop elements or these other interactive tidbits don't work with screen readers and that's confusing as hell. There's a lack of keyboard accessibility. Ah, missing or ambiguous link text forms that don't comply with accessibility guidelines. So then they can't fill them out and non-html content limiting accessibility. So. There's a whole slew of different ways in which the internet has to catch up. Andy um you and specific I would like you to talk to me about this thing because you had talked a little bit about it earlier. 01:05:03.54 Andy Yeah I mean the internet one of the best things about it even though it's like a flawed entity is that it has provided access and community to so many folks with disabilities you know from people. Like my uncle in the early days of the internet who found like an outlet for socializing online that they never had before because of you know, living most of their lives inside a house in a small town in rural america you know, um. 2 you know more recent phenomena like Tumblr and communities of neurodiversity and you know people finding their niches among people who have similar diagnoses so it's it's a wonderful thing for connecting people who. You know have disparate needs different diagnoses of various kinds and make sure that that space where everyone is congregating is accessible to all is super important. So yeah, all of the things you mentioned even though you know for a lot of folks. They might be kind of. Jargony I mean they're all incredibly important. Imagine you know how you would navigate the internet being a blind user you know for the students I work with ah things like Tiktok are pretty meaningless. Um you know, ah. 01:06:38.10 Andy Things like Twitter are more accessible because there is a lot of text content and Twitter also has like image tagging pretty well built in comparatively. Um, but. You know, ah you mentioned the logical sequencing that's important for blind users too because if you go to a web page that has like a massive wall of text that's broken down into paragraphs. It's very important for each of those and sections to be properly headed. So that a person can navigate to the portion that they need to get to It's really like being handed a book and not having a table of contents to go with it but being asked to find what you need to find you know you can either listen to a 3 hour you know web page. You know, using your screen reader or you get. Your table of contents that tells you oh I need to go down to this section. This subsection specifically. So really it. It really is just about making sure that the internet is in as accessible a place as possible. 01:07:45.77 Jala Yeah, and I find like there are some social media sites like you mentioned that are better about it than others and I will say like I said Mastodon I feel is better than Twitter at that but a lot of like there's still like a lot of people who are not on. 01:08:05.54 Jala That service yet who are still on the sinking ship that is Twitter ah, and I mean I'm yeah I'm I'm in both places you can find me at both places. So I'm I'm in in all the places on the internet but um. 01:08:09.69 Andy Ah, yeah I haven't fully migrated either. 01:08:21.60 Jala Yeah there's definitely like I find on Instagram it's a little bit harder to get to the place to do the alt tech stuff. So I'm started adopting something that I saw a person who has a very cute dog who is very popular. Ah, she started doing like ah her alt text more or less in the caption of of her thing instead and so that's what I started trying to do on Instagram more recently. Although like I said I don't I'm trying to make it a thing that I remember to do I'm not always good about doing that. But i'm. 01:08:41.25 Andy Right? yeah. 01:08:56.77 Jala Trying to do better about it so that I can be actively bettering myself and improving myself the way that we're talking about you know because it is important for everybody to be able to see you know to use and navigate around the different. Places on the internet I mean like even when it comes to stuff like shopping on the internet. What if you were to go to a web page and you're trying to buy something and you have to use a screen reader and it's not compliant with the web design elements you know per per accessibility stuff. And then like there's just no logical way for you to do the shopping you need to do on this site because you know it's just not designed with you in mind at all. 01:09:43.71 Andy Yeah, their their checkout is an image of a shopping cart that hasn't been tagged as what it is. You know? so when the screen reader hits that it just says image or you know if it's if it's. 01:09:59.75 Andy Not been properly formatted at all. It might not even recognize an image being there. So ah, that's why it's really important to tag images I mean it might sound like tedious at first but it can actually be kind of fun. You know when you're really thinking about what you're trying to present with this image and why you're including it. Um, a lot of images are honestly superfluous, but you know when we're putting things out there and we have an intention behind them making sure that the alt tags or alt text for the images represents that is like kind of a good endeavor and it kind of makes you think. About why you're including this thing to begin with you know what? what does it exist for what is your intention with it and I think you know having more intentionality about posting online is probably something we all ought to do. 01:10:47.66 Jala Yeah, absolutely and I will say too that in writing the text for like the alt text for these images or doing my thing in the caption or whatever like I started reading the little image descriptions from that 1 lady on the internet. The cute dog here comes lemon by the way if you if you want to go look at her stuff on Instagram she has a very cute little pupper anyway, um I I as a sighted person like to read those captions actually and so it's like no, it actually is um. Fun to read the descriptions that people come up with for the images that they are sharing as well. Even if you are able to view those images so you know that's that's something else to consider too like it enriches the situation and and like ah the depth to which people interact with. These things that you post out there as well. So. 01:11:48.45 Andy There's a pretty great Twitter account called Frasier looking at video games and whoever runs that comes up with some pretty good alt text. It may not be you know designed with ah brevity in mind but it's always. Amusing and I think it would come across to the users using it as funnier the way it's written then if it were just sort of a straight read of the image. 01:12:13.12 Jala Awesome! Awesome! So Suzie do you have anything else to add about like tech tech stuff. 01:12:22.71 Suzie Um, just the more accessibility there is the better I mean you guys kind of covered it I like I like seeing all the accessibility that does come up. 01:12:38.35 Suzie When it comes up because it's exciting to see but there needs to be more of it. 01:12:40.18 Jala Yeah I I will say I have seen a couple of shops that I patronize that have some like little popout things like tomboyex.com has like a whole little popout thing that is. Just like a whole accessibility menu that will allow you to adjust a lot of different elements on the website. So I'm assuming that that is designed with a screen reader in mind. Although I do not know but I'm pretty sure since they have the little popup thing that it it has a screen reader announcement of some kind. So um, that's very Cool. So if you want to see what a good accessibility thing is on the internet that would be a good place to look Um, but yeah, like I'm I'm trying to be more intentional in that way and with what I'm sharing as well. 100% compliance At this point I am trying to remember to do this all the time once it becomes a habit though then it will just be there and it'll be Great. So so. 01:13:40.60 Andy Yeah, and and and another element of this just real quick is any video content having subtitles. You know that's such a big thing now and it benefits everyone you know like. 01:13:41.27 Suzie Yeah I love that. Okay. 01:13:49.96 Jala Yes. 01:13:57.66 Andy You see so many things about people who watch Netflix and other streaming services who use the captions because I think the explanation is the audio isn't mixed right for tvs basically but it ends up being that you know home viewers can't really hear st. Things as well as they would in different settings. So there things like this really benefit everyone I I can't think of any that are a detraction for anyone. You know you're not losing out or missing out on your online experience having these things included. 01:14:33.27 Jala Absolutely absolutely and ah in a lot of ways it ends up over time like saving. Companies more money to have all of these accessibility features because well first off it it making things accessible means more people can come there and do whatever they're doing and then also if they have to make adjustments in the Future. Oh wait, They don't have to because they already designed with that in mind. 01:14:56.73 Andy Exactly. 01:14:59.60 Jala You know so that way if policy changes come up and there's like new compliance guidelines. It's less difficult for them to accommodate that because they're already designed like that. So on the note of design I'm excited to talk about. What we can do. You know we've already kind of talked a little bit about that. But what we what we can do and also what is universal design I'm real excited about this part so we did discuss some general dos and don't don'ts for ableism. And your behavior towards folks with disabilities on the episode with Suzie that was episode 17 but there are some additional suggestions for 1 on one interaction that I do not believe that I mentioned in that episode. Ah so speaking clearly using simple words and concrete concepts. Listening to the disabled person. Not assuming that somebody needs help you ask and you take their lead on what they tell you because you're listening to them you speak directly to the disabled person. Not to the personal care attendant or the interpreter and so on. Ah, being aware of personal space and respecting that and that includes their assistive devices that is part of them. You do not consider that as you know a fair game that is not open game that is part of them. You you give them space around all of that and. 01:16:23.92 Jala Checking in with people for any potential accessibility needs if you are planning some kind of event or a get-together. Um I know for example that even within the the Lgbtq community. There is a lot of talk about how. Like pride events and things are not usually very accessible. There are some events that are doing better but there are also a lot of events where they just don't consider that they don't consider disabled folks. They are considering. Um, you know like they're marginalized group but not like the marginalized group within their marginalized group and it's like that doesn't even make any sense but that's where we're at so you know, Ah, ah, lots of lots of folks have to get on board with that. You know So yeah. 01:17:07.58 Suzie The irony. 01:17:11.98 Jala Yeah, it kind of blew my mind when I was like you know doing all my usual studying and I came across that and I'm like well huh, that's that's something I didn't even think about before but huh Yeah, that's that sucks. That's I mean that sucks that that's yeah so. 01:17:23.81 Suzie That sadly doesn't surprise me. 01:17:30.80 Jala Well I mean like people going to people you know I mean and that's the true there are yeah yeah, absolutely so let's talk about um, different different things like architectural and City City design stuff so there are different ways to. 01:17:31.22 Suzie Yeah, but there are a ton of good people out there doing awesome things So positive. 01:17:49.35 Jala Build for universal access. So elevators access ramps handrails wider sidewalks and aisles and like I'm sure as you're hearing these like at least for me like when I hear wider sidewalks and aisles like I think about specific places I've been that have these. You know it's like okay checkmark lower curbs clear paths through buildings and that means like without stuff overhanging that people can bonk into and things like that clear and readable signage larger doorways lowered counters. Accessible seating and bathrooms and 5000000000 other things like there's so many aspects to this but um I will be including some links as usual to articles about these topics and then also there is a whole slew of web accessibility initiative guidelines. For internet users. So I will also put a link to that in the show notes. So folks can check that out if they are curious and of course I'll put a link to tomboy x as well. So you can see what that website looks like so I'm going to throw to Andy Andy tell me what is the difference between accessible usable. And universal design I gave you a big blog of text to read. 01:19:09.60 Andy Ah, well I'll tell you accessible design is a design process in which the needs of people with disabilities are specifically considered accessibility sometimes refers to the characteristic that products services and facilities can be independently used by people with a. Variety of disabilities. So accessible design is often personally tailored such as a home built for a disabled person for their specific needs. Universal design is a broader concept that's defined by the center for universal design at North Carolina State University as design of products and environments to be usable by all people to the greatest extent possible without the need for adaptation or specialized design. This does not include accessibility aids where needed so things like oh sorry sorry got it. 01:20:00.84 Jala Does not exclude exclude. Yeah, so so yeah, reading that again because it's got to be underlined the design of products and environments to be usable by all people to the greatest extent possible. 01:20:17.42 Jala Without the need for adaptation or specialized design that does not exclude accessibility aids where needed. That's just you know trying to make it usable by folks with or without accessible accessibility Aids. So. Some examples of that would be. 01:20:40.13 Andy Sidewalks with Curb cuts and doors that automatically open when a person moves near them. Those are examples of universally designed products. They benefit people with disabilities parents with baby strollers, delivery workers and others. Human characteristics considered in universal designs may include age Gender Stature Race ethnicity culture native language and learning preference and then in the yeah in the case of information technology. 01:21:11.34 Andy Products that are universally designed are accessible to and usable by people with a wide variety of characteristics including different types of disabilities. These products are often designed to eliminate or minimize the need for assistive Technologies. At the same time they are compatible with common assistive hardware and software devices. 01:21:29.14 Jala Yeah, so that's again, that's trying to make it as accessible as possible for as many people as possible and that's what universal design is so what is usable design. 01:21:44.25 Andy So Usable design serves to create products that are easy and efficient to use Usability has been defined by the international organization for standardization as the effectiveness efficiency. And satisfaction with which a specified set of users can achieve a specified set of tasks in a particular environment so Usability Engineers test the ease at which users can learn to operate a product and remember how to do so when they return to the product at a later time. Unfortunately people with disabilities are not always included in Usability tests therefore many products that perform well in Usability tests are not accessible to people with disabilities. 01:22:28.18 Jala Yes, so the best The best best thing is having those neat personally tailored accessible designs that is harder to come by when it comes to stuff in general I think I might have mentioned it on the last episode if I didn't ah here we go. 01:22:46.40 Jala There is a company for example, that's called Rebirth Garments It is and a cool company that makes gender affirming and you know like fashion-y type attire. For disabled folks according to their disability requirements like what what you know because there's there's a lot of sensory processing stuff that a lot of disabled folks have and they have to have certain accommodations for different elements of their own disability and the owner sky will. Make these garments and things for them in a way that is you know accessible for them because there's things such. As for example, like ah ches binders that are very hard for disabled folks to get in and out of well if you need a chess binder and you are Disabled. You're kind of SSol. But. 01:23:43.46 Jala You know sky over at rebirth garments will make these products and not only make these products to specifications for you but also make these garments at an affordable price that you that's not like ah a flat price. It's pricing according to what the person who is. Ah, commissioning this is able to pay because so many people with disabilities are below the poverty level so rebirth garments. Ah Skye is also very much an advocate an active member of like the larger disability community. So I definitely. Recommend that folks check that out but that is an example of accessible design that is stuff specifically tailored for individuals' personal needs and preferences but universal design is where it's something. That's more broadly created for. Just you know, not necessarily every single individual but as many people as can be considered. You know, realistically within the scope of whatever the the service or the product or whatever is so thoughts about universal design andy I know that you were telling me. That you were interested in this topic so tell me more. 01:25:04.10 Andy Yeah, so I mean ultimately Universal design is kind of aspirational I mean like you were saying you you try to design for as many people as possible taking all things into account within reason. Basically you know. Ah, and so really, it's about making environments experiences more accessible and as accessible to as many people as Possible. There's always going to be individuals with very specific needs that can't be predicted or planned for in advance but you know. A lot of needs are Predictable. You know if you are holding a public event. There is a chance that someone could arrive in a wheelchair you know that fairly good chance if if anyone ah who is older is included. You know, um. It's really just about taking time and making sure that you're keeping the needs of potential users in mind. Yeah, and it's vital to include and listen to individuals when they do present themselves with a certain need. 01:26:18.32 Andy If if you haven't taken their need into consideration. You kind of have to adjust. 01:26:23.40 Jala Yeah, yeah, and I think even when it comes to stuff like um when people are planning an event a lot of times if they can't see a physical disability. They don't. Ah, you know, assume that this person needs anything and that's because again like this in individual invisible disabilities are invisible people don't see them and because they don't see them. They don't. Take them into consideration. But if there are you know certain needs that folks have because of you know, something like they have panic attacks in large crowds or whatever they need a quiet place. 01:27:08.47 Jala You know it's kind of like when I've recently in the last several years started seeing conventions that have like a quiet room that's just for people who are on sensory overload and they just need some space and some time away from everything that's going on. 01:27:24.19 Jala And you know seeing those pop up and that's like a consideration for accessibility right there and you know like that's becoming more prevalent in different conventions I know for example, pax south had it back when Pax South existed um other. Local ones also had that kind of a thing. 01:27:44.83 Andy That's awesome. I'm kind of a recluse so I didn't even know they were doing things like that for public events and I think that's Awesome. You know, especially at like a you know video game or pop culture. You know media or technology centered event. You know where your chances of kind of netting people who are on the spectrum or have other sensory needs is probably Higher. You know, just by virtue of Interests. You know? yeah. 01:28:13.41 Jala And and that's why I mentioned it is because you know like that's an example of you know that accommodation and the thing is is that people who go into those quiet spaces are not necessarily just. Folks who have some kind of a specific sensory processing thing. That's also people who just are aren't you know like they're they're introverts and it makes them tired to be around a bunch of people and they just want to go relax and rest somewhere you know and people who are just you know. 01:28:47.88 Jala Looking for a place to to focus on something or whatever like and they can also use that same space and it's again accessible and makes everything more accessible for folks who otherwise wouldn't be able to handle being in a space with that many people for example, so. 01:29:06.34 Jala So Suzie what do you think about this subject, I mean like just um because you have some some different needs yourself. Um and because of the the kind of situations that you have like with your Adhd and the other um things that you've got going on. Um you know I would. Think that wouldn't it be nice if X right? like something that would be. 01:29:35.76 Suzie And oh yeah, like those quiet rooms I get overstimulateated and it's I mean I have earphones that I wear but the choir room's really cool. It's just oh a lot. They have a lot of that stuff for parents now. So I. 01:29:55.62 Suzie Um, I would try to find place. It's awesome that there's places for people that don't aren't just for kids. It's for adults too to decompress relax regulate their systems and be able to go back out and enjoy a place that they. 01:30:12.90 Suzie Maybe just would have had to leave if that wasn't the case I Ah I always make sure like where's the quiet place like like I'll always just like my cars. My safe place So that's where I would go if I could so the fact that there's like whole room. To go do that. That's Amazing. So and everybody has different needs for a quiet room. So just give them the quiet place and so they could do what they need to do. 01:30:46.33 Jala Yeah I will yeah I will say that about the pack South Quiet room. Not only was it quiet but the lights were dimmer too because those those super bright lights in the convention halls and stuff. 01:30:49.70 Suzie To help themselves. Yeah. 01:30:55.30 Suzie So yeah I hate them. 01:31:01.65 Jala Yeah, it. It gets to be overwhelming and then like if it's that or outside in in Texas where it's very bright most of the time you know then that that becomes overwhelming and too much just you know, visually as well. So those rooms also being dark. You know, dark and quiet places that have extra comfy seats and just like whatever and it's just you know lots of signs and you know, ah an attendant in there to make sure that people aren't going in there and then wrecking the quiet quiet place. You know like that they're enforcing. You know the quietness of the quiet place. You know? Yeah, yeah, yeah, yeah, so I didn't know that they had those kinds of things for parents as well. Where would those kinds of. 01:31:33.95 Suzie I Love it I love it I'd be there I'd be like I gotta go take a break. 01:31:45.79 Suzie And oh yeah, like like a Disneyland they have the the kids room there's little toilets changing station a little living room with like cartoons on and it's quiet and you could feed your baby in there if you want. Um, so that's a Disneyland so that's like 1 of the places when I would go and take my oldest. He's 17 now so I would take him to Disneyland with me and that there was that option to go in there which was really cool. Um, airports are getting better. They have. 01:32:24.92 Suzie If not full on rooms with a microwave and a chair and just you know a changing station. They have the breastfeeding pods now or if you're not breastfeeding. You can still go in there and relax with your baby and do what you need to do so that was that's exciting as. 01:32:43.71 Suzie Someone who traveled and had kids to hat to see that for people to have options if they don't want to breastfeed in public. 01:32:49.21 Jala Yeah, yeah, and in the city. Not not where I live because I live in Houston but in a adjacent city pairland that's where I but back when I was running marathons and ultra marathons. My running group was in paraland and there was a very very large group of people like 300 people in that group and so when we would do our long runs on Saturday morning. It'd be super early in the morning you know nonsense you know, odark 30 and we'd be out there running. Well certain areas of Pairland have those larger accessible sidewalks and so you know those are there for accessibility. You know compliance stuff. Um, but. Boy is it so much easier to do like 300 people. You know, staggered out in a running group for like miles and miles of bright orange shirts when there's like a large enough sidewalk for everybody who's in the same you know running pace group you know to to hang out together and actually you know be side by side rather than. On like a little teensy tiny sidewalk you know and that's an an example of how the accessibility of that larger sidewalk is great for people who aren't disabled as well. You know. 01:34:04.50 Suzie Yeah, just us walking as a family of 6 on a tiny sidewalk is irrit. Ah yeah because we've got kids bikes toddler. You know so it's just like that's really awesome I think that's great. 01:34:06.36 Jala Nonsense Yeah nonsense. Yeah yeah. 01:34:17.68 Jala Yeah, yeah, so that's that's another thing that um, you know that's a place in a situation where I see another accessibility thing that is wonderful and usable for anybody. So. Andy do you have any instances that you can recall of some you know, specific kinds of accessible areas that have been great. 01:34:42.31 Andy Well um I did have to step aside a moment. So forgive me if I repeat anything but did you guys talk about movie theaters already. Okay, so most of the time they're terrible but increasingly more often movie theaters are offering. Um. 01:34:59.00 Andy Either devices that will display captions for a movie for folks or listening devices that will provide described audio for people with low vision or who are blind and they also will sometimes offer like. Times where they show a movie ah with the lights still on in the theater and with like the sound turned down a bit for folks with sensory needs. So There are ways that you know experiences like even if they aren't doing that. As part of like the main offering that they give still giving some sort of alternative session that folks can go to if they have sensory needs is another step towards inclusion even if it's separate. It is still taking. People's unique needs in mind and giving them something rather than nothing. You know it may not be perfect, but it's it's better than nothing for Sure. Um. 01:36:03.33 Jala Yeah I mean it's ah it's a step in the right direction for sure that the fact that they can accommodate all of that and I wasn't aware of that and just just when you're talking about just having the sound turned down. Oh my God I Wish more movie theaters would allow you to turn the sound down because at least. 01:36:20.46 Jala Here Locally Oh my God every time I walk into a movie theater for any reason and I'm going to see a movie I come out and it's like my ears are ringing. It's like way too loud in there. So. 01:36:29.89 Suzie I've had to leave movie theaters before because there was like an action movie I was just like I can't I can't take this I gotta go. 01:36:35.80 Jala Yeah, yeah, I'm sure I mean especially if you have something like a ptsd situation something like that for that's a lot you know. 01:36:36.10 Andy it's it's overwhelming it can be triggering for folks too. you know um yeah yeah yeah and ah you know I'm thinking online spaces to or you know. Digital spaces in general Netflix is getting really good about having like described audio for low vision viewers. It's a feature in a lot of their mainstream shows which is probably something most folks don't even notice. But if there's like a little ad icon. On there next to the cc logo that means that it has described audio that you can turn on that's a separate audio or an additional audio stream that includes description of what's happening on screen. So. It's really opening up the experience to more people. 01:37:23.24 Jala Awesome. 01:37:30.60 Andy And it all takes work it really all takes work. You know so there is work to be done. It's not always easy, but like when the benefit is including people like why would you not want to? yeah. 01:37:40.50 Jala Yeah, yeah, well I mean like again, there's just so many different situations where somebody who is not necessarily in the the disabled demographic has. 01:37:40.18 Suzie I agree. 01:37:56.60 Jala You know is is given more convenient like why would you make it less convenient like accessibility makes it more convenient for the people who do not require those things and it makes it accessible for and like that's. Ah, win win situation I mean it's granted more of a win for the folks who don't require it because they get extra. You know they get extra benefit off of it. You know the people who require those different accommodations are only just meeting the. Bare minimum level think about that we are not at a bare minimum level for folks with disabilities across like broadly as a society. We are not meeting the bare minimum level of accessibility needs for folks and for folks who do not have those requirements if. 01:38:48.10 Jala Everything is made built like with the universal design principles in mind which I will link a whole article about Universal Design Principle. Um, but like if if those principles are. Taken into account in the building of new structures and stuff going forward and in the building of websites and all of this other stuff and you know, updating everything then that just gives you even easier time doing what you're doing like. 01:39:16.50 Andy Right? Yeah and something I think you deserve some praise for Jall is the fact you provide transcripts for your podcasts like that's a pretty rare practice but it opens up your episodes to a whole new audience and. 01:39:17.57 Jala There's no reason not to do it. 01:39:34.90 Andy You know it's also a case in which universal design again benefits everyone you know there's plenty of content out there that I like listening to or watching but there's also times I'd rather just kind of gloss through text you know real quickly rather than watch. Ah, 5 minute video of some talking head to learn something. You know you know so I think you deserve some cut credit and praise there that that's a good step toward inclusion and universal design and you know like in the United States at least. 01:39:50.71 Suzie I agree with that. 01:40:09.19 Andy The Americans with disabilities act and the standards it set really are the floor and universal design and inclusion and belonging are the ceiling. We should all be reaching toward. 01:40:21.55 Jala Yeah, yeah, and so a note about the transcripts they are wonderfully part of my recording service. They are automatically transcribed from just whatever this dictation app that they are Using. Spits out so sometimes it comes up with some really weird phrases some really weird stuff and like I try to go through there and clean it up, but there is no way in hell I have enough time to record all the podcasts edit all the podcasts and edit all the transcripts every single line So like. 01:40:59.74 Jala You know, forgive me folks who use the transcripts I know they're not perfect, but they are as much as I have time for you know I do I do clean them up. Believe it or not. It's some nonsense that comes out of them sometimes I need to start posting on the internet Some of the crap that comes out because. 01:41:16.57 Jala It's nonsense sometimes. 01:41:18.63 Andy But you know, um, speech to text transcription has gotten so much better over the years and especially here recently and if your transcripts are like ninety five ninety seven percent accurate. You know that is. Pretty solid. You know that's more understanding than some people might get just listening. Unfortunately. 01:41:42.52 Jala I use the dictation app on my phone a lot because I am multitasking most of the time and I will tell you it's not better at least not on my phone boy. Ah the stuff that comes out of my dictation app is just. 01:41:58.45 Jala Funny and I have to always go back and like end up editing it So I don't know if I'm actually saving any time but um I feel like I am so I still use it anyway. But yeah it it comes up with some nonsense for sure like it. It just does not understand my accent I suppose but. 01:42:17.71 Jala Penny Howe so um that's all of the notes that I've got about accessibility and design principle and stuff like that. But I'm going to open up the floor if either of you have. Further stuff that you want to say about just accessibility in general about ah disability stuff in general that has not been covered on the prior podcast. 01:42:43.71 Jala Big takeaways. 01:42:45.48 Suzie We went over a lot which is I loved it. 01:42:49.92 Andy Yeah I mean one of the big things is really just the design of environments and experiences is really the primary way in which people can be Disabled. You know most poor design as a result of. Like thoughtlessness or ignorance but it still results in a layer of oppression for people. Yeah so good intentions. Bad intentions. It still. Ah you know, ultimately results in the same thing. 01:43:23.88 Jala Yeah, and that's a really important point. Um, you know it's not like folks who don't put the alt text or terrible demons but like also maybe maybe like consider that going forward and and do your best to remember? um. 01:43:31.20 Andy Right. 01:43:39.35 Jala And all of that as you as you go forward in the world and maybe consider some of these things take them into account whenever you are having folks over there might be even stuff like say somebody has Celiac disease or something and you are going to have a get together. Maybe you should see what they might need to eat. You know like you know if you're having foods or whatever you know. 01:43:58.65 Jala Ah, just as an example. So yeah and that's that's not a disability but that's you know something that hey if you're asking everyone about their accessibility needs that makes them more comfortable. 01:43:59.17 Andy Um, yeah, take people's allergies dietary needs in mind you know. 01:44:17.47 Jala So that's super important to do I think but all right? Well if that is everything I think ah biggest takeaways here are we need to try to do better about disabled folks be more mindful of their needs and continue to work towards. 01:44:37.19 Jala These kind of more universal like let's let's make accessibility our keyword you know like vote for accessible accessibility topics. Keep these in mind you know, maybe if you are in a place and you see that something isn't compliant. Make a state. You know say something to somebody about it. Um, that may or may not actually help the situation. But at least you did something you know you you did something you said something you made you put that bug in the ear. Um, also. 01:45:09.86 Jala And give praise if you see something that's done well and be like hey I think it's really cool that you have X you know and give them that positive reinforcement because that is for anybody encouragement for them to do more. So just yes, yes. 01:45:23.60 Andy Because it can be labor intensive. 01:45:29.31 Jala So yeah, that's that's my big takeaway. So from here we're going to say the usual thing which is where on the internet can people find you if you are to be found or if you are not to be found. What do you want to plug Suzy. 01:45:47.37 Suzie I Don't know. 01:45:52.60 Jala Ah, Suzie's in in the Discord and um, otherwise very busy. 01:46:00.80 Jala Yeah, Suzy would like to plug that you need to be nice the end. Okay. 01:46:05.52 Suzie Yeah, be nice to people. 01:46:08.14 Andy You know that that's always the best plug. 01:46:12.76 Jala Yes, so Andy how about you are you? you already said, you're on social media. So do you want to just hand that out. 01:46:19.99 Andy Yeah I keep kind of a low profile but I am on Twitter I'm at Andy Underscore K Underscore two fifty on there and I've been like Andy K Two fifty with and without underscores all over the internet. Pretty much as long as I've been online. So if you really want to dig up my past That's how you can do it. 01:46:45.87 Jala Andy and with or without underscores k 2 50 in places on the internet where he he may be found right? So what's with what's with the two fifty 01:46:49.79 Andy Um, yep, yep Yep! Um, so it was my license plate at one point it was randomly assigned. It was my vanity plate when I first got a car. My parents got. 01:46:53.95 Suzie And maybe from a really long time ago. Ah. 01:47:06.88 Andy Andy on there and then two fifty was my number designation. So and now you know we've got name numbers people all over the internet who aren't real and I look like one of them. But I'm not one of the I'm just so. 01:47:20.63 Jala Okay, well because I like anytime anybody has like a ah strange handle I'm always like okay where'd that come from like because I've got the most uncreative handle ever. It's just jollat on in places on the internet where you can find me including Jollic on dot place where you got this episode. 01:47:24.36 Andy Right? yeah. 01:47:37.93 Jala And that is all for today folks. So with that in mind until next time take care of yourself and remember to smile. [Show Outro] Jala Jala-chan's Place is brought to you by Fireheart Media. If you enjoyed the show, please share this and all of our episodes with friends and remember to rate and review us on your podcast platform of choice. Word of mouth is the only way we grow. If you like, you can also kick us a few bucks to help us keep the lights on at ko-fi.com/fireheartmedia. Check out our other show Monster Dear Monster: A Monster Exploration Podcast at monsterdear.monster. Music composed and produced by Jake Lionhart with additional guitars and mixed by Spencer Smith. Follow along with my adventures via jalachan.place or find me at jalachan in places on the net! [Outro Music]