Latest / When Life Gives You Lemons / What Counts As Independence After SCI (part 3)

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What Counts As Independence After SCI (part 3) · When Life Gives You Lemons

• 0:05
  Kevin: Welcome to our podcast When Life Gives You Lemons.
• 0:09
  Kevin: I'm Kevin.
• 0:11
  palmi: And I'm Palmy.
• 0:12
  palmi: We consider ourselves disability advocates and intend to highlight some disability issues and things we find interesting that we frequently encounter when we're out and about.
• 0:23
  palmi: Also, some history on disability that we find interesting.
• 0:27
  palmi: This year we're going to include more of the interviews of the people that the disability affects.
• 0:34
  palmi: We hope you enjoy it.
• 0:38
  Kevin: Welcome back to our podcast, everybody.
• 0:41
  Kevin: This is the third episode we're doing on SCI.
• 0:47
  Kevin: And our guest interviewed today is Wendy.
• 0:55
  palmi: I'm here.
• 0:56
  palmi: SCI, sorry.
• 1:00
  Speaker 2: Cord injury.
• 1:01
  palmi: Spinal Cord Injury.
• 1:02
  palmi: And hers is a little different from the gentleman we interviewed last week.
• 1:07
  Speaker 2: Hers is in the lumbar area, and she is a paraplegic, which means just her legs or at the waist area is affected.
• 1:21
  Kevin: Okay.
• 1:21
  Kevin: Well, let's get on with the interview.
• 1:23
  Kevin: Hi again, everybody.
• 1:26
  Kevin: I'm here today with Wendy, and uh we're gonna talk some more SCI.
• 1:32
  Kevin: This is the last interview we're doing on spinal coordinator or SEI.
• 1:41
  Kevin: And so we're gonna go probably a little bit, I assume, a little bit more depth with differing types.
• 1:51
  Kevin: And not just what Wendy is facing.
• 1:56
  Kevin: Uh Thomas was kind of not too up to speed on what the other types were, so we're gonna do that.
• 2:08
  Kevin: Hopefully, Wendy can explain some stuff that we got wrong.
• 2:12
  Kevin: There's anything like that.
• 2:15
  Kevin: Wendy, feel free to throw that.
• 2:19
  Wendy: So hi, I'm Wendy.
• 2:21
  Wendy: I'm uh L1 paraplegic, have been for the past 35 years.
• 2:28
  Wendy: Um I just I'm not an expert on spinal cord injury other than you know, lived experience for 35 years.
• 2:37
  Wendy: So ask away.
• 2:39
  Wendy: I'll spew whatever knowledge I possibly can.
• 2:43
  Kevin: I do have one question, if you don't mind, real quick.
• 2:47
  Kevin: You said you're paraplegic.
• 2:49
  Kevin: What's the difference between paraplegics and quadriplegics?
• 2:58
  Wendy: Um, the main difference is that um para, meaning two, affects two limbs, quadra meaning four, affects four limbs, and generally um in the world of spinal cord injury, it's the level of your injury.
• 3:15
  Wendy: So most paraplegics are um thoracic, lower thoracic, and lumbar injuries, where quadriplegics would be um a higher injury, like a cervical injury or a higher thoracic injury.
• 3:32
  Speaker 2: That's uh that describes what Danny was going through.
• 3:37
  Speaker 2: He had a cervical spinal cord injury.
• 3:42
  Speaker 2: He was uh born without the top vertebrae in the cervical area, so it was just kind of like a spleen sort of uh support mechanism.
• 3:56
  Speaker 2: That's where he was getting his injuries from, but it took him a while to figure it out.
• 4:03
  Wendy: So yeah, because it's not just as clear-cut as you know, if you think of Christopher Reeve being a quadriplegic, where, you know, basically paralyzed from the neck down and nothing works, you can also have uh other spinal cord um symptoms, issues where you have like you know, neck and shoulder or hand or even diaphragm problems, but not be fully paralyzed.
• 4:33
  Kevin: I hope you heard uh the part where Palmi and I were disagreeing on the uh depression because uh as I said when we're discussing it, my problems with mobility just got progressively worse over time, whereas with paraplegia, usually I'm assuming most of the stuff happens to you all of a sudden.
• 5:09
  Wendy: Yeah, I think I think that depends a lot on um how you sustain your injury, from what I understand.
• 5:18
  Wendy: Like for instance, I uh was in a motor vehicle accident, so I had a traumatic injury, which I haven't really progressed or gotten anything back um since my injury, but I know like some people have had viruses or other neurological problems where it's a slower progression, even with just paraplegia or other types of uh just uh loss of sensation issues.
• 5:54
  Kevin: Yeah, sounds pretty good.
• 5:56
  Kevin: So uh do you think it's better to uh cope with stuff like that gradually as with diseases or I guess by the core injury, just boom.
• 6:15
  Kevin: You don't have your legs anymore.
• 6:20
  Wendy: Um are you talking mental health-wise?
• 6:22
  Kevin: Yeah, mental health-wise.
• 6:25
  Wendy: Oh, you know, that's a tough one because we're all so different.
• 6:29
  Kevin: I know it is, yeah.
• 6:31
  Kevin: It's very hard.
• 6:32
  Kevin: It's hard to cope either way, I imagine, but uh at least I had time to think about you know what's gonna happen next, sort of thing.
• 6:46
  Kevin: Right.
• 6:47
  Wendy: Like as opposed to say as opposed to say like an ALS or something where you know it's a progressive type um situation.
• 6:58
  Wendy: Right.
• 6:58
  Wendy: Um, I think for me it was you know, you're kind of thrown into it.
• 7:06
  Wendy: You have to you have to cope or not cope.
• 7:09
  Wendy: And um when I was in the hospital after my injury, I just kind of looked around at the 12 other people who were there with me.
• 7:19
  Wendy: And at any given time in the spinal cord injury um center, you people come and go, right?
• 7:27
  Wendy: But um, for the most part, there were like 12 people at any given time there with me.
• 7:32
  Wendy: And you know, uh, you saw those people who really wanted to try to get back home and rehab themselves and do the best they can and get back at life.
• 7:44
  Wendy: And then um there were definitely those people who did not want to live that way at all, um, to the point of even, you know, trying to sabotage their lives while in the hospital.
• 7:59
  Wendy: And at that moment, I made the decision that I was going to do the best I could, no matter what, that I was going to get out and get back to as normal of a life as possible.
• 8:12
  Wendy: And, you know, kind of try to teach people about this type of disability.
• 8:20
  Kevin: Yeah, that uh positive attitude is very important.
• 8:25
  Kevin: And that's what you know, when we speak to disability, and you know, we're not asking for the you know the uh prince or princess treatment.
• 8:41
  Kevin: We just want you to be able to go about our lives.
• 8:46
  Kevin: Yeah, right.
• 8:48
  Kevin: You know, like uh Thomas had a really good relationship with this appointment with his employer and was able to work remotely, uh, which you know pre-COVID was pretty rare to do.
• 9:08
  Kevin: Right.
• 9:09
  Kevin: You know, post-COVID, it's a lot more uh acceptable or popular or whatever, right?
• 9:17
  Kevin: Um speaking of which, do you still work?
• 9:23
  Wendy: Um, I was a lawyer for a small amount of time.
• 9:27
  Wendy: Um, and then my husband got a job in a rural community, um, and I wanted to support him, and I thought we were only going to stay a short amount of time.
• 9:37
  Wendy: So I didn't want to start up a whole entire law practice, and then 25 years later, here we are, we're still here.
• 9:44
  Wendy: But I um I do a lot of like teaching uh legal type things, and I do a lot of disability advocacy, but I wanted to let you know let you know like early on, like it was 1990 when I was injured, and just weeks after the Americans with Disabilities Act came out, and um I was working, I was actually injured um on a business trip, and um that was so difficult because my company didn't know what to do with me.
• 10:19
  Wendy: I worked really hard to get back to work, they did everything possible for me not to come back to work, and that's what made me, I was not a in uh I was not a lawyer at the time.
• 10:32
  Wendy: Um, and that's what sent me to law school because I was just like, I have to figure this out.
• 10:39
  Wendy: And then I was lucky enough that in my third year of law school, there was a posting on a board for um an estate planning uh job, basically.
• 10:50
  Wendy: And I saw that the lawyer had lived near where I was buying my new house.
• 10:56
  Wendy: And she lived just down the street.
• 10:57
  Wendy: And she's like, this is great.
• 10:59
  Wendy: I will just drop off work at your house so you can work from home.
• 11:03
  Wendy: So I had like one of the first like work from home type jobs.
• 11:06
  Wendy: It was it was very very lovely of her to do that for me.
• 11:11
  Wendy: We'd have our weekly meetings at my house around my dining room table, and um it's great.
• 11:17
  Wendy: I know it's very fortunate.
• 11:20
  Kevin: Yes, the other end of the spectrum.
• 11:24
  Kevin: I was already employed, I started having problems.
• 11:28
  Kevin: Like whenever I navigate a quarter, I get off balance.
• 11:34
  Kevin: And of course, my speech started to slur.
• 11:38
  Kevin: Right, right.
• 11:49
  Kevin: And uh course I had no medical idea what was going on, but I went to my employer and said, you know, basically I'm gonna quit.
• 12:03
  Kevin: This is why I need to figure out what's going on.
• 12:07
  Kevin: I went and saw a local neurologist who knew something was wrong with me neurologically, but he didn't have the knowledge to figure out what it was, and he referred me to uh more on top of pain neurologist in St.
• 12:30
  Kevin: Louis.
• 12:31
  Kevin: So I had to drive all the way to St.
• 12:34
  Kevin: Louis and back sometimes a couple times a week.
• 12:38
  Wendy: You really do need a specialist, and I find even now, you know, being 35 years into my injury, that I go to my regular doctor, you know, for checkups or you know, just health or wellness checks, and um they still do not understand spinal cord injury.
• 13:00
  Wendy: So, in order to get anything specific, I have to go to someone who specifically knows about spinal cord injury.
• 13:08
  Wendy: And then in that case, I always have to educate them on my particular spinal cord injury because everyone with a spinal cord injury is different.
• 13:18
  Speaker 2: So yeah, that's one of the things that uh Palmi and I were talking about.
• 13:24
  Speaker 2: It can happen to anyone any time, and it's always different.
• 13:29
  Speaker 2: So uh I can't emphasize that enough.
• 13:34
  Speaker 2: Have you listened to our episode about Neuralink and the work they do with uh spinal cord injuries?
• 13:46
  Kevin: I've done a little research into that, a little a little reading.
• 13:50
  Wendy: I'm a little, you know, skeptical at the moment, as with anything, but I think most people, you know, when they talk about tinkering with the brain, it's like, well, hold on there, Doc.
• 14:04
  Wendy: Uh but uh the one thing that really impressed me about drilling as he as opposed to others, they also use a brain computer interface chip, and they you know may go about this differently, they may go about it more you know traditionally you have a surgeon implant their chip, etc.
• 14:36
  Wendy: And uh the thing I like about their like is they just said we're not you know gonna rely on a human doing this all the time.
• 14:49
  Wendy: We're just gonna go ahead and build a robotic surgery station where it's always gonna be the same, and you know they have these really thin fibers that they implant from the tip into the brain, yeah, and they have to have specific areas of the brain they access.
• 15:13
  Wendy: And I thought it was a really dumb idea at the time, but uh Elon Musk was the very first patient they had.
• 15:25
  Wendy: I said, you know, now's not a time to money with the smart guy's brain.
• 15:33
  Wendy: You know, pay some homeless guy that is not gonna contribute as much to the world as Elon Musk is and pay him you know a decent amount of money and have them sign waivers and stuff, and you know, don't you know don't punch around and have the robotic surgical procedure go arrive by 40 yard at the wrong time or something like that.
• 16:12
  Wendy: Right.
• 16:13
  Wendy: But it is exciting times that you know, you know, you want to see this progress and you want to see um any type of neurological issue be, you know, you want to see a fix, right?
• 16:27
  Wendy: You want to see that happen.
• 16:28
  Wendy: Um with Neuralink, I'd be interested to learn like how we bridge some of the scar tissue.
• 16:40
  Speaker 1: So anybody can watch them.
• 16:42
  Speaker 1: And uh what they did this year, okay, last year, they had uh initially the very first year, they had three patients.
• 16:54
  Speaker 1: Patient zero was Elon Musk, and then they had a spine cord injury, and I think an Alzheimer's patient.
• 17:04
  Speaker 1: And uh they eventually you know got reintegrated into society and said, okay, that's all we wanted out of this.
• 17:16
  Speaker 1: We're you know, done.
• 17:18
  Speaker 1: They recruited like uh I can't recall the exact number, it was like 10 or 12 more.
• 17:26
  Speaker 1: At least half of them were spinal cord injuries, and they actually had interviews with these people before they underwent the surgery.
• 17:41
  Speaker 1: So I guess you have like a comparison to what they do now versus where they were, you know, that's kind of what we're missing with uh the the very first patients they had.
• 17:58
  Speaker 1: They can tell us exactly, you know, what they had learned over again, but we don't really get the full impact of that story with before we you know, for example, I talked to a girl from Louisiana who is a parapolitic, and uh okay obviously she's in a little cherry face here on one of the updates, and she's up and walking around, you know.
• 18:31
  Speaker 1: Hey, we're talking great success here.
• 18:35
  Speaker 1: And you're right, it's an exciting time to think of that kind of stuff.
• 18:43
  Wendy: Yes, and I think you know, Neuralink hooking up with like the Miami project, um, to work with certain people with uh paralysis is a really great uh it's a great advancement.
• 18:57
  Wendy: So it'll be interesting to see where it all goes.
• 19:01
  Kevin: What they did is they started out with the clinic, you know, they have don actual doctors and engineers that were together to make all this stuff happen, and uh they were just had that one clinic in uh California, but they opened up several so that now they do stuff worldwide.
• 19:29
  Kevin: I think uh they also did something on the east coast, uh Miami, uh for example.
• 19:40
  Kevin: Uh yeah, London, I think, Dubai.
• 19:46
  Kevin: Uh young so that they have more of a global exposure to a patient base so they can move ahead with their clinical trials and troubleshoot for you know, patients.
• 20:08
  Wendy: Right.
• 20:08
  Wendy: And I think the more people willing to do that, especially early on in their injuries, the more advancement that they will have.
• 20:18
  Wendy: Oh, yeah.
• 20:19
  Kevin: And it'll be I happen to work with a guy in Kenya who's a priest for a turst there.
• 20:26
  Kevin: He's trying to uh develop uh okay.
• 20:32
  Kevin: Let me explain this better by going back.
• 20:35
  Kevin: Kidney has nothing like the EDA.
• 20:38
  Kevin: If you're disabled, you're just uh a drain on society, and they'd rather not deal with you.
• 20:47
  Kevin: So they kind of segregate you and your family from the uh the workforce, the village, the city, the town, you all get it.
• 21:06
  Kevin: You're not involved in anything, you're just a waste.
• 21:12
  Kevin: So what we're trying to do is get that uh little bit of that positive attitude about yes, you are aware of something, and part of that is we're trying to teach people that they have value and it's not something I'm gonna fly to Kenya, and they have it's more like we're teaching them real basic uh skills like how do they create a Facebook account or an Instagram account.
• 21:51
  Kevin: They make friends that have similar problems of the sort.
• 21:56
  Kevin: They find out that not everywhere as The same problems they have.
• 22:01
  Kevin: But everywhere does have some of the problems they have.
• 22:07
  Kevin: I mean it's like uh funding party space that accommodation of vehicles like universal is you know somewhere like uh London has laws about you know handicap spots that are similar to RADA but yeah I don't think they have the uh quota for like uh ADA spells out yields and at least at least twenty percent I believe it was of your parking spaces will be allotted for handicapped people.
• 22:54
  Kevin: And they don't have that, so you might end up in a parking lot that has one space.
• 23:01
  Kevin: And it's real hard to navigate around that sometimes.
• 23:08
  Wendy: Yes.
• 23:09
  Wendy: I think uh anywhere you go, you know, you have your cultural differences and then you have your legal differences, and even here in the United States, because the ADA doesn't really have a lot of um a lot of teeth, like you have no way uh you have no remedies a lot of times.
• 23:26
  Wendy: There are many places that you go where they don't abide by how many parking spaces you should have or what type or even what they look like.
• 23:38
  Wendy: You know, they t ignore the ADA, whether it's a private company or even the uh United States.
• 23:47
  Wendy: I don't need the sector grass just I live in Wisconsin most of the time, and I live in California for three months of the year.
• 24:01
  Kevin: When I think of Wisconsin, I think for rural or just a few built-up cities.
• 24:10
  Kevin: Oh really?
• 24:13
  Wendy: No, it's not like that.
• 24:16
  Wendy: No, I mean we I mean our largest city, you know, like we have we have like seven million people in in the state.
• 24:28
  Wendy: I mean, there are done definitely some rural areas and definitely some small towns, but we definitely have you know some urban areas for sure.
• 24:38
  Kevin: Yeah, because I live on it's kind of like that here, Missouri, as well.
• 24:43
  Kevin: They have so many old historic buildings that are exempt from DEDA in Kansas City.
• 24:58
  Kevin: Yeah.
• 25:03
  Wendy: I mean, although you know, we talked, you know, we you and I met on a travel blog, and you know, you talk to people who go all over the world, right?
• 25:14
  Wendy: To where history is so much older than ours.
• 25:17
  Wendy: And for some reason, they're able to work around their buildings that are several hundred years old and make them as accessible as possible, or you know, give you some sort of reduced rate if you can't go to every single part of that building.
• 25:36
  Wendy: And I think here in the United States, we're so stuck on the legal codes that we don't think about how to make things as accessible as possible.
• 25:49
  Wendy: And the other problem we have is we don't have government money to make these historic sites accessible.
• 25:57
  Wendy: Like, you know, we rely on private money.
• 26:01
  Wendy: So that's a that's a problem too when it comes to disability and making things accessible, in my opinion.
• 26:10
  Kevin: One of the uh things I thought were a bit lacking in are uh enforcement of some of those roles in some areas.
• 26:20
  Kevin: I mean, um I live, I'm gonna vote in the country, and so like if I go see a doctor, I've got to drive to the neighboring city, and they just would not enforce people in parking in handicapped spots to go handicapped placard or plates, you know, permits or you know what whatever we're doing at the time.
• 26:55
  Kevin: Uh right.
• 26:57
  Wendy: Yeah, because that's left up to our police force, and right it's it, but it but it's enforcing a federal law.
• 27:06
  Wendy: I don't know that you know sometimes they will, you know, put give a ticket, but they're not going to make anybody move so you can get back into your car or van.
• 27:22
  Kevin: It's simply don't enforce parking violations of any time.
• 27:28
  Wendy: And a lot of our parking is private land.
• 27:31
  Kevin: So yeah.
• 27:32
  Kevin: Yeah.
• 27:33
  Kevin: Yeah.
• 27:33
  Kevin: The private companies, like a shopping mall, they're not going to necessarily enforce it, anything.
• 27:40
  Kevin: You know, even though it takes away from our, you know, our liberty and freedom of getting back into our vehicles and being able to move when we want to or park where we need to, you know.
• 27:53
  Kevin: That makes it difficult.
• 27:57
  Speaker 2: Yeah, uh, can you tell me a real not a real, but without being real personal, tell me a funny story about accessibility or lack thereof.
• 28:13
  Speaker 1: A lack thereof.
• 28:14
  Speaker 1: Yeah.
• 28:15
  Speaker 1: Oh, wow, that puts me on the spot.
• 28:18
  Speaker 1: I wish I could like recall them because there's so many.
• 28:21
  Speaker 1: Okay.
• 28:22
  Speaker 2: You know, like we can circle around and come back if that makes you feel better about it.
• 28:28
  Speaker 2: Yeah.
• 28:30
  Speaker 1: Um, one of the stories I have, it's kind of a legal story, and it it it makes me like, so I live in a rural town.
• 28:39
  Speaker 1: I live like an hour from Madison, Wisconsin, and um there was a snowstorm.
• 28:45
  Speaker 1: We get snowstorms here.
• 28:46
  Speaker 1: And the only way that I could go out to the store was if I parked, you know, basically driving the wrong direction on or parking.
• 28:58
  Speaker 1: I wasn't driving the wrong direction on the road, but parking the wrong direction so that my ramp for my van would go out into the street where the street was plowed.
• 29:08
  Speaker 1: But when I so I got out of my van and I went into the store and I got back and I had a ticket on my car.
• 29:17
  Speaker 1: So I just I just drove to the police station and so that I could talk to someone in person.
• 29:25
  Speaker 1: And then like, you know, this is what's going on.
• 29:29
  Speaker 1: And it was just a funny interaction because they're like, well, you know, this is the ordinance.
• 29:34
  Speaker 1: I'm like, I understand the ordinance.
• 29:37
  Speaker 1: I just, you know, needed to get groceries, I needed to, you know, do this.
• 29:43
  Speaker 1: This is the only possible way I could do it.
• 29:46
  Speaker 1: I'm like, if you need to find me for breaking the ordinance, that's fine.
• 29:51
  Speaker 1: But he's like, well, you could have just pulled around the corner and parked there.
• 29:55
  Speaker 1: And then I'm like, I would have the same issue.
• 29:58
  Speaker 1: He's like, well, then drive around the next corner and park there.
• 30:02
  Speaker 1: I'm like, but my ramp is still on the same side of my vehicle.
• 30:07
  Speaker 1: And um finally another police officer came over and he's like, give me your ticket, you're flying.
• 30:15
  Speaker 1: And I was just like, oh my god, I don't know how to do this.
• 30:21
  Speaker 1: Yeah.
• 30:21
  Speaker 1: So anyway, I mean, it's just silly things, and it's always like the majority of the problems I would say have our parking problems, you know, because people don't adhere to the rules per se.
• 30:37
  Speaker 1: And I find like it's a lot of other, I like to call it disability and disability crime, because there are a lot of people who have the placard who will park in the access areas, you know, the lined areas between the accessible parking spots.
• 30:54
  Speaker 1: And they don't realize that if you have a van with a ramp or a lift, you know, somebody parks over those lines.
• 31:01
  Speaker 2: Well, you need that space.
• 31:03
  Speaker 1: You need that, or you're you cannot get back in, you know, and I'm sure they don't want their car damaged if I'm trying to get into my van while their car is parked over the lines, and you know, it's just it's just like common courtesy stuff, really.
• 31:19
  Speaker 2: Yeah, first things I did after getting your van was order one of those bumper sticker floating things.
• 31:28
  Speaker 2: Yeah, the nave heat of the store, you know.
• 31:34
  Speaker 2: Yeah, yeah.
• 31:35
  Speaker 2: When I do a hand off that disabled on disabled problem, nobody reads that.
• 31:43
  Speaker 2: I need something that like flashes neon.
• 31:48
  Speaker 2: It draws her attention because uh it's just a waste of money to get us there girl like that.
• 32:00
  Speaker 1: Right.
• 32:00
  Speaker 1: I don't I don't know how to how to remedy that at all.
• 32:04
  Speaker 1: I've been, you know, we think about that all the time, like how to set up parking so that um people with vans park in van parking, and people who don't have uh van choose the uh smaller access aisle parking um first before parking in the van parking, because that makes a difference also.
• 32:26
  Speaker 1: Um, you know, it's just the education and being yeah, being aware of what you're doing, you know.
• 32:35
  Speaker 2: I guess I think uh one of the things I might do, of course, I think I met you through the uh the circle app get your blog.
• 32:52
  Speaker 2: You know, and I really like that because you know you can kind of look at people's profile and get a better understanding of what they're dealing with and what their uh interests are, you know.
• 33:10
  Speaker 2: It's not like Facebook where uh I have a Facebook page for the podcast uh as well, but like I'd say two-thirds of my audience.
• 33:24
  Speaker 2: You know, English is not their native language.
• 33:29
  Speaker 2: We have a a pretty global audience, if you will.
• 33:35
  Speaker 2: You know, uh I'm not saying those people can't speak English, some of them do very well.
• 33:43
  Speaker 2: Uh they send me notes and stuff in English all the time.
• 33:48
  Speaker 2: I used to use AI uh display to uh try and translate some of the uh you know the scrolls we got, you know.
• 34:03
  Speaker 2: If we don't on politics, feel free to talk to each other about you know your travel or your laws or your your problems.
• 34:15
  Speaker 2: You might find people who have the same problem just in different areas, and they may have found a better way for you to work around it.
• 34:29
  Speaker 2: Um and uh after a while I stopped doing that because I realized both of them are like uh uh how do I put this?
• 34:43
  Speaker 2: They're like graphic designers or systems engineers, and you know they're very tech oriented, and you know, probably a good number of them are gamers or uh the hangout forums speak English anyway, so yeah, they probably speak better English than I do.
• 35:12
  Speaker 1: I find that a lot when traveling, that's for sure.
• 35:16
  Speaker 1: I think that um the UK system, their blue badge system is much better than our ABA system.
• 35:26
  Speaker 2: Um have you found that the UK been disabled?
• 35:33
  Speaker 1: Oh, so they have a system where they basically have like, I think it's like five categories, and they'll tell you if it's like a one through a five, depending on how much assistance you might need to get into some building.
• 35:47
  Speaker 1: Um, which I think is very helpful, you know, whether you have a mobility aid or you just need, you know, you just need to know if there's one step or you know, that type of thing.
• 36:01
  Speaker 2: That helps in with uh well what I call the invisible disabilities, like deafness or you know uh actually um well being uh involved in the law until you've actually read the ADA, but they make allowances for you know the uh cancer patients, you know, maybe because the treatment they're undergoing may not be able to walk great distances or they need those spots even to do, you know, go about their day and get out and about yeah yeah, I mean uh it should encompass people who, you know, regardless of disability, who who need like, you know, for instance, parking spaces, like those people who cannot only walk short distances.
• 37:06
  Speaker 1: It it should encompass those people, um, either temporarily or permanently.
• 37:13
  Speaker 1: Um I just I just think that you know the problem comes in is when everybody's getting a uh disability card placard and uses it and then you know gives it to their family members to use and you know all that that kind of thing where it just gets shared and it never gets um monitored and then people use it forever.
• 37:38
  Speaker 2: And yeah, sometimes you know, we're our own worst anatomy.
• 37:43
  Speaker 2: I know it is true.
• 37:45
  Speaker 2: Don't give out your placard, folks.
• 37:48
  Speaker 2: Nope.
• 37:49
  Speaker 2: Um people who are have gone through the troll of heather, yeah.
• 37:57
  Speaker 2: I don't know how it is everywhere, but I had to have my doctor write a prescription and a letter, and he charges me for letters to stupid, but that's what I had to take to the DV to get a placard, right?
• 38:20
  Speaker 1: I don't I have another I have another pet peeve about placards.
• 38:24
  Speaker 1: Can I share that?
• 38:25
  Speaker 1: Sure, sure.
• 38:26
  Speaker 1: My pet peeve is so let's say let's say my husband who is not disabled is driving me in my in my van, say to Walmart.
• 38:37
  Speaker 1: And my pet pee would be as if my husband were to park in a disabled parking spot, an accessible spot, and let me out and then stay there.
• 38:49
  Speaker 1: That would make me very angry.
• 38:51
  Speaker 1: And you see that all the time where people will let somebody out who is disabled and then park in that disabled parking spot.
• 38:59
  Speaker 1: That's not what that is for.
• 39:02
  Speaker 1: And especially in this day when we have cell phones and ability to contact people, um, go park somewhere else.
• 39:10
  Speaker 1: Go park somewhere else and then pick the person up at the front door.
• 39:14
  Speaker 1: Um just because they're the parking, like you said before, the the accessible parking is so limited that um if people are just sitting there waiting for the disabled person to come back out of the store, that that is limiting what we can what we can do with our days.
• 39:37
  Speaker 2: Yeah, sometimes it seems so simple.
• 39:40
  Speaker 2: Sometimes the problem is so complex, like uh van your cars taking up the van space.
• 39:51
  Speaker 2: Yeah, just uh I think uh the government if nothing else, local media could help us with doing like a public service announcement.
• 40:10
  Speaker 1: Yeah, and that's really what it is because it's just common courtesy.
• 40:14
  Speaker 1: Yeah, it's common courtesy, it's not anything else.
• 40:17
  Speaker 2: It's just being aware of what you're doing, yeah, you know, and it's not a some people have no clue that their ass wanted vehicles that need that space.
• 40:30
  Speaker 2: I've got one of those uh ramps that shoot up the side, too.
• 40:36
  Speaker 2: So yeah, it's just I feel your pain.
• 40:43
  Speaker 1: It just happens so often.
• 40:44
  Speaker 1: I mean, I think that's the one thing that keeps me from probably going out and doing more, is just knowing that I may or may not be able to park somewhere, you know.
• 40:57
  Speaker 1: Yeah, I think that's the hardest, the hardest part of the day, really, in as far as um social interaction and going somewhere.
• 41:08
  Speaker 1: It's like, how am I going to park with the ramp and get out?
• 41:12
  Speaker 1: And you know, is there gonna be what's the train gonna be like?
• 41:17
  Speaker 1: Is it on grass?
• 41:18
  Speaker 1: Is it on concrete?
• 41:20
  Speaker 1: Is it on you know, rocks?
• 41:22
  Speaker 1: Like what is it?
• 41:23
  Speaker 1: Because that all makes a difference.
• 41:25
  Speaker 1: And then you get there, and then all of a sudden somebody parks you in, and you're just stuck there until you can find someone to move your car.
• 41:34
  Speaker 1: And I don't know about you, but I don't always want to ask a stranger to I don't want to give them the keys to my car and say, Here, can you move my car for me?
• 41:44
  Speaker 2: Yeah, yeah.
• 41:52
  Speaker 1: Yeah, but I can imagine that driving off someday.
• 41:57
  Speaker 1: But you have to trust people too, otherwise, you know, like I've heard horror stories of people um who could not get into their vans like on hot days and ended up with having you know heat stroke and things like that.
• 42:13
  Speaker 2: Just oh man, yeah, and then uh one of the pet peefs I've got is uh people who mess with wheelchairs and they're independent.
• 42:26
  Speaker 2: They think it's cool to take and first spend or whatever, and you come out and say my wheelchair's gone.
• 42:38
  Speaker 2: Eventually some kid shows up and say, Oh, are you waiting on this wheelchair?
• 42:44
  Speaker 2: It's like dude already called the police, yeah.
• 42:49
  Speaker 2: Uh oh yeah, but just give me the wheelchair, I'll wait from the police until I was mistaken, just you know, give me the darn thing.
• 43:03
  Speaker 1: Yeah, I don't think people realize like people how hard it is to get a wheelchair.
• 43:09
  Speaker 1: Yeah, how hard it is just to get a wheelchair, let alone pay for a wheelchair, and the amount of time it takes to get a wheelchair, you know, yeah.
• 43:21
  Speaker 2: Yeah, sometimes you know, people are in the say the uh sports, like you see in the Paralympics and stuff, they can't really uh afford uh like have a fleet of wheelchairs that they make you with the one and if that one is missing or damaged, they're out quite a bit of money.
• 43:51
  Speaker 2: Right.
• 43:52
  Speaker 2: It was custom for them, you know, right at one time.
• 43:57
  Speaker 1: Yeah.
• 43:57
  Speaker 1: Custom custom wheelchairs are Extraordinarily expensive, far beyond I think what people would realize.
• 44:06
  Speaker 2: I read an article about a guy who was like exceptionally tall.
• 44:13
  Speaker 2: Like he liked you know beyond wheel table and tall.
• 44:20
  Speaker 2: And he had to have a custom wheelchair made because he was so tall.
• 44:28
  Speaker 2: And somehow somebody stole his wheelchair, I believe.
• 44:34
  Speaker 2: And uh he was of course, you know, like who's gonna pay for this?
• 44:41
  Speaker 2: You know, I can't afford to pay all that money for another chair.
• 44:46
  Speaker 2: And you know, it's like I feel important, but yeah, the solution is not always to find somebody else to pay for it.
• 44:58
  Speaker 1: Right.
• 44:59
  Speaker 2: And well, insurance, you know, they generally it's about every five to six years that they'll help out with a wheelchair, but you know, if you have to go and pay out of pocket, that's all being a veteran who retired from the army, the VEPs were mine, but I only get it every five years.
• 45:22
  Speaker 2: Yeah.
• 45:22
  Speaker 2: But I can't break it or have a stolen or whatever beforehand.
• 45:28
  Speaker 2: It's like got a wheel of sound for them to issue another one for me.
• 45:35
  Speaker 2: Right.
• 45:36
  Speaker 1: It would be you would be out a lot, especially affect your your freedom.
• 45:44
  Speaker 2: Well, Wendy, it was uh a real pleasure to ask how he meet someone who is able to practice law, understand law, you know, laws are weird, you know, we can go there different sometimes.
• 46:03
  Speaker 1: Especially disability law, like you know, we're very fortunate to have the ADA in one respect, but it does codify everything, it puts everything into codes, and so when we're building buildings, you know, the builders uh they the uh people who are um what do you what do you call those people who develop the developers, you know, they're looking at the codes and they will only build by codes, and they're not looking at really like the human experience of it in most cases.
• 46:38
  Speaker 1: And um so that part of the ADA is kind of difficult.
• 46:43
  Speaker 1: So as we're including more and more people in the disabled community, you know, we need to have people in the building and developing in architectural areas really kind of look at how these spaces are used.
• 46:58
  Speaker 2: Yeah, and I don't know how things are in Wisconsin, but most of the public areas, anyway, that are handicapped accessible or like reverse engineered from non-accessible, and then they threw in a ramp, or they modified their bathroom or you know, their stuff water, you know.
• 47:26
  Speaker 2: And it's like, you know, there has to be a way to figure out how to do this without taking up the entire bathroom just to add one stall.
• 47:39
  Speaker 1: Right.
• 47:39
  Speaker 1: There are ways to do that.
• 47:41
  Speaker 1: And and you know, one way to do that is including people with disabilities in on the renovations or the buildings, and a lot of times it just takes your community like to get in uh active in your community and really help your community understand so that um that when they do when it does come time to do like reserve um renovations on buildings or like re-invent the downtown or whatever they're doing, um, is to have know that they can come to you for your input and really make a difference that way.
• 48:20
  Speaker 1: Um that's that's what I'm finding is working.
• 48:24
  Speaker 1: Like I work with a group of people in Madison, Wisconsin, and you know, we're we meet regularly with the state and the county and developers and um builders and you know, just trying to make sure that they understand what's happening and how to make it better, you know, just more inclusive is what it is.
• 48:48
  Speaker 2: I think what I'll do is I'll go to our county commissioners meeting once and how they uh you can schedule time to bring up issues that's not really an issue, per se, just some sage advice.
• 49:11
  Speaker 1: Yeah.
• 49:11
  Speaker 1: Or even even getting more handicapped parking, or I guess I should call it accessible parking, you know, more accessible parking around your community, because a lot of times people aren't thinking about that.
• 49:23
  Speaker 1: For instance, um, we didn't have any accessible parking near our city hall.
• 49:28
  Speaker 1: And I I asked the mayor, I'm like, are you planning on putting that in?
• 49:32
  Speaker 1: And he's like, Oh.
• 49:33
  Speaker 1: And I'm like, no, I'm I'm completely serious.
• 49:36
  Speaker 1: You have no disabled parking anywhere near City Hall.
• 49:41
  Speaker 1: Like, how am I supposed to come and you know pay my water bill if I choose to go into this, you know, into that building or even vote or or whatever it is I need to do if I have to park, you know, four blocks away.
• 49:56
  Speaker 1: That's you know, like why do you not have one?
• 50:00
  Speaker 1: You know, right and that's something that talking to your officials can help with.
• 50:05
  Speaker 1: Like if you feel you need one, there may be space for one, you know.
• 50:11
  Speaker 2: Yeah, I don't uh feel there's an issue that needs to be corrected, just think going forward.
• 50:19
  Speaker 2: We need to put some thought into this before we just you know write out a budget item or something like that, you know.
• 50:30
  Speaker 2: Right.
• 50:31
  Speaker 2: Yeah, just have your voice in there was a good start.
• 50:35
  Speaker 2: Last year we had uh a gal that we talked to with cerebral palsy who'd gone to the university here in that city that's near us, and um she had a problem with a cop.
• 50:53
  Speaker 2: You know, he would just assume she's drunk and you know, throw in the drunk tank sort of thing.
• 51:02
  Speaker 2: You know, it's you know, obviously he was a while ago.
• 51:08
  Speaker 1: But uh but that's a training issue, right?
• 51:12
  Speaker 2: They're trained to look for certain things instead of realizing it is, but we need to address the training, perhaps.
• 51:21
  Speaker 2: Absolutely.
• 51:22
  Speaker 2: Because I got I'm not satisfied with that answer I got about the parking issue.
• 51:31
  Speaker 2: We don't enforce parking violations.
• 51:34
  Speaker 2: I mean really I think there's uh you've got like five handicap species here, there's nine cars parked in them, and I can't the only place that I can because I was trying to go into a business and they were like they have that one step up, they're up above the parking lot.
• 52:03
  Speaker 2: And the only place with the Kirby spent was uh where all those cars were in the way.
• 52:12
  Speaker 2: Yeah.
• 52:13
  Speaker 2: So yeah, things like that really pissed me off.
• 52:18
  Speaker 2: But okay.
• 52:20
  Speaker 2: Let me uh before I forget, because I forgot to ask uh Thomas last time, last interview, if people want to reach out and get a hold of you, uh maybe talk about community outrage outreach or what the ADA is all about, or what it you know how'd you read this and did that?
• 52:45
  Speaker 2: Because it just gives examples, it's not designed to be all encompassing.
• 52:52
  Speaker 2: Uh so yeah, when whenever they're trying to figure out how legal ease-wise the situation fits in with that.
• 53:06
  Speaker 2: And then for example, we had a uh homeowners association that had a problem with us putting a carport on front of the garage because the van doesn't fit in the garage.
• 53:23
  Speaker 2: And uh if it's snowy or raining, it's really a problem sometimes to get the realtor in the van.
• 53:34
  Speaker 2: We're so used to it, we didn't know where you can go fast and where you can't all that stuff.
• 53:44
  Speaker 2: They were trying to say no, you can't put that there.
• 53:49
  Speaker 2: And I said, excuse me.
• 53:51
  Speaker 2: It's not like, yeah, well, you look, tell me I can't use this for access to my vehicle.
• 54:01
  Speaker 2: And they were like, Oh, we didn't think of that.
• 54:06
  Speaker 2: Oh yeah, you're right.
• 54:08
  Speaker 2: It's gonna fit you, you've got to pay it's hood and you know the pay matches your house.
• 54:16
  Speaker 2: Yeah.
• 54:19
  Speaker 1: Well, there's a bunch of different laws that can affect that, right?
• 54:22
  Speaker 1: Like the rehab act, right?
• 54:25
  Speaker 1: That's probably the one where you want uh accommodations at your condo, like reasonable accommodations.
• 54:33
  Speaker 1: I don't know.
• 54:34
  Speaker 1: ADA is mostly for you know public accommodations.
• 54:39
  Speaker 1: Um so going to a disability lawyer might be your best bet, or sometimes there's independent living centers near you that um can help you find the right people to talk to.
• 54:55
  Speaker 2: Well, Whitney, it's been a pleasure talking to you.
• 55:00
  Speaker 2: Uh if people do want to get in touch with you, did they do it via email?
• 55:07
  Speaker 2: Via social media?
• 55:11
  Speaker 1: Did they really not on any I'm not on any social media?
• 55:15
  Speaker 1: I um I purposely stay off of it.
• 55:18
  Speaker 2: So um I guess you know, through Accessible Go, if anybody has any travel-related questions, well, they couldn't go just uh very nice while they're saying goodbye.
• 55:33
  Speaker 2: They're not gonna do this anymore.
• 55:36
  Speaker 1: Oh, they're not.
• 55:37
  Speaker 1: Oh no.
• 55:38
  Speaker 2: But that's uh what I'll do is uh see what they did for Thomas because I forgot to ask him this question.
• 55:47
  Speaker 2: He since told me it's okay to use his email address, so I'll address that next time.
• 55:56
  Speaker 1: Yeah, just like yeah, I'm not I'm a I'm a retired lawyer, so I don't I can't really give legal advice, you know.
• 56:04
  Speaker 1: But if somebody wanted to talk about disability stuff, they could email me, that would be fine.
• 56:10
  Speaker 2: Um yeah, we see my wife and I say during our podcast that we like to uh uh think of ourselves as disability advocates because we want to be involved, we want to have that voice of the community, and uh nobody, the fact of the matter is nobody can advertise or yourself better than you can.
• 56:44
  Speaker 2: Right.
• 56:45
  Speaker 1: That's yeah, and sometimes it's just knowing where to go or where to get the information or exactly you know how how to educate yourself on it, yeah, yeah.
• 56:55
  Speaker 2: Yeah, one of my funny stories is uh one time I'm not kidding.
• 57:01
  Speaker 2: I saw a sign that said, you know, had wheelchair and the access upstairs, yes, so it's like okay, this didn't help at all.
• 57:18
  Speaker 2: I can't go up the stairs, I can't get to the wheelchair access, right?
• 57:24
  Speaker 2: Yep, that's the kind of thing I want to be involved with heading off, you know, not wait until it's like a problem.
• 57:38
  Speaker 1: I know, and and we all just need to, again, it helps us to have our voice in the community, right?
• 57:45
  Speaker 1: Do that, make sure people are consulting us when the these issues come up or when something's being built or renovated, or if you notice, you know, like a store you like is being renovated, just say, hey, you know, can we have a little chat about this?
• 58:01
  Speaker 1: And you know, in a very positive way, because it only helps other people to utilize their their store or their building or whatever.
• 58:13
  Speaker 1: And I can't understand why um you wouldn't want more patrons of your building than less, you know.
• 58:23
  Speaker 2: So I don't I don't do a big deal either.
• 58:27
  Speaker 2: Uh yeah.
• 58:29
  Speaker 1: And it's just a matter of being very, you know, very kind and very um, you know, showing them the upside of of how this can work, you know, and and that it doesn't cost any more money.
• 58:42
  Speaker 1: It that used to be a thing where they'd say, oh, it costs so much money to make someplace accessible.
• 58:47
  Speaker 1: And and I just don't, it's just not, it's being proved not to be true anymore, you know.
• 58:54
  Speaker 2: Um renovations, but uh I have money lover for basically uh made handicap accessible, you know, put the faux wood tiles down, it's uh carpeting grab bars everywhere, you know.
• 59:16
  Speaker 2: It's like I finally feel comfortable and move forward to my house.
• 59:23
  Speaker 2: Yeah.
• 59:24
  Speaker 2: Of course, we get a lot of tornadoes, and it's like yeah, I don't want to run downstairs.
• 59:32
  Speaker 2: Thank you very much.
• 59:34
  Speaker 1: That's another thing, you know, where what is the evacuation plan, right, for people with disabilities?
• 59:40
  Speaker 1: That's always a big issue.
• 59:43
  Speaker 2: Actually, it's not ideal, but it's possible because I have when the development was built, they had their own uh sewage treatment plant behind uh the main turnoff on the main road.
• 1:00:04
  Speaker 2: He put an access road right next to my house.
• 1:00:10
  Speaker 2: And you know uh you know, I don't need to go to the executed treatment plant, but I can use it to go if I'm on a spl level, you know, so it's like the bottom level of Swagg.
• 1:00:30
  Speaker 2: If I can just cruise down the road, then cut across my backyard and go right in the uh back door.
• 1:00:39
  Speaker 2: Um what we'll do, Wendy, is since you're not on social media, if people want to get in touch with you, they can just get in touch with me and I'll forward you their email.
• 1:00:58
  Speaker 1: Okay, that would be great.
• 1:01:00
  Speaker 1: And maybe in the meantime, I'll set up a separate email address for just questions so that I can keep that all separate and then I can let you know that.
• 1:01:11
  Speaker 2: Well, that was certainly good interview.
• 1:01:14
  Kevin: That was very interesting.
• 1:01:16
  Speaker 2: Thank you very much, Wendy.
• 1:01:18
  Kevin: It was nice talking uh hearing about our injuries, yeah.
• 1:01:22
  Speaker 2: Um