Episode 59: Life Before the ADA
(Intro Music)
E: Hi I’m Emily Ladau
K: And I’m Kyle Khachadurian
E: And you’re listening to another episode of The Accessible Stall
K: You know how this goes…What are we gonna talk about today, Emily?
E: We’re gonna talk about life pre ADA and post
K: “What’s the ADA?” he says as though he’s doing the show and doesn’t know what the ADA is?
E: The Americans with Disabilities Act of 1990!
K: Oh, what does it do though?
E: So it’s supposed to make life better for us or give us civil rights or something, I don’t know…
(Inaudible)
K: …Bush Sr. did something right, that was a good thing!
E: Anyway, it’s not gonna be just us talking about it on account of neither of us were alive Pre-ADA, so we have the most bestest guest in the whole world!
K: Who could it be? I know who it is!
E: My mom! It’s my mom! Say “Hi,” Mom!
Ellen Ladau: (Will be denoted as “EL” throughout episode)
EL: Hi Mom
K: This is already the best episode
EL: Hey, hi my name’s Ellen, I’m Emily’s mom and yes, I am a pre- ADA-er
E: Sorry to age you!
EL: Yes. Even though Emily and I look like twin sisters, she’s gonna hate me for this
Emily groans
EL: I am 57 and she will be 27 in eight days
K: Well just know that Emily doesn’t look a day over 48, so…
Emily and Ellen laugh
E: Great so we have a real, live authentic pre-ADA human being right here with us. This is so exciting
EL: So ask away!
E: Cool! So what was it like in the Stone Age?
EL (laughing) We had to use our feet to drive!
E: Like The Flinstones.
EL: I love The Flintstones!
E: What if you were disabled?
K: What if you were disabled? Literally that’s what she’s telling us?
E: No how could you drive a Flinstones car and you can’t use your feet? Are the Flinstones Ableist?
K: Oh. I don’t think they’re Ableist, I just don’t think they had the technology
EL: I just don’t think they thought of those things in those days?
E: I don’t think they did! Okay, so Real Talk
EL: Wheelchairs were rarely seen. There was one TV Series,
E: So we’re not talking about The Stone Age anymore….
EL: No, we’re talking about the early sixties and seventies. I remember one TV show there was a character in a wheelchair, the main character… but other than that, People with Disabilities were rarely seen in public life. I think that if the ADA can be credited for one thing it would be for ending the isolation of DIsability.
E: So what you’re saying is that Grandma and Grandpa kept you locked in a cage before
K: And then George Bush signs the law and all of a sudden you were liberated
(Emily laughs)
EL: Nooo! I was not saying that, To my mom: Make sure you heard that I was not saying that. But no, I didn’t see other people with Disabilities routinely. Of course, your uncle, my younger brother has the same disability and other than him and one other boy on our special bus who had Spina Bifida on our special bus who walked with crutches, you didn’t really see other people with disabilities in any real form in public. And even taking Grandma out to…And I’m talking about a generic Grandma now. Out to a restaurant, or other public places was a complicated thing because of lack of curb cuts and wide entrances and bathrooms so…
E: Hypothetical Grandma, people!
EL: Hypothetical Grandma, yes. I said “Generic Grandma” Oh, I was doing air-quotes but nobody can hear that on a podcast.
E: Okay, but like, you’re saying that it was good for visibility.
K: Do you think the lack of visibility was due to the fact of accessibility or the lack of visibility was due to what I assume was a much larger stigma surrounding Disability as a whole? Or maybe both?
EL: Maybe both, I mean you can’t quantify by percentage…I think each generation, each decade in my life has been defined by certain things. The Sixties have a certain vibe to it, the Seventies were non-protest, and every generation was defined by certain things that were on the public’s mind, so at least from my perspective Disability was a hot issue. So, it wasn’t that people were aware of it as a Civil Rights issue.
E: Interesting!
K: See, but I would say that they’re still not. Would you agree with that?
E: I would. I would say that it’s not enough of a Civil Rights issue yet. I mean, that’s why we wanted to do this episode!
K: Yeah I wanted you to tell us how good we have it and that we should just shut up every once in a while because we don’t know how bad it could’ve been
EL: Um…Oh, I think you have it a lot better, but I honestly don’t know that I would credit it all to the ADA. I actually would accredit it more to the Internet.
K: Oh, no kidding? That’s a good point
EL: Yeah
E: Smart lady, that one
(Ellen chuckles)
EL: I think the internet has also drastically reduced the isolation of being disabled and…My concern is, and I’ve said this to Emily before, she goes to a lot of these conferences and such but I feel like just talking within your own circle? You gotta get out more mainstream and…It’s happening but…you’re not there yet.
E: Well yeah, and I think that’s why people keep saying, “Oh it’s 28 years since the ADA and where are we?” Because we’re not at this level of full inclusion and equality.
EL: Just look at the New York City Subway system!
E: Ugh
EL: Or that people with Disabilities can’t drink on an airplane because they can’t use the bathroom.
K: Oh I thought you meant drink alcohol…you meant drink anything!
E: Yeah I dehydrate myself before flying on a plane
EL: Yeah, fluid restriction because you’re worried about having to go to the bathroom on a plane. So yeah, there’s a real long way to go. I think that this generation is doing a great job of sharing all the various Disability experiences are like and also because there’s so much more visibility of people with particularly physical impairments, that they wear proudly…like returning Veterans. You know, when I was younger I didn’t want anybody to see my scars but now it’s nothing for people to walk around with their prosthetics in full sight so I think that’s a source of showing their pride and it’s it’s normalizing the Disability experience for everybody because children are seeing that and hopefully going to say, “Mommy? Daddy? What is that?” The parent hopefully gives them an age appropriate explanation that doesn’t make the child afraid
E: That’s where the lines of communication get cut off though because sometimes the parents who are still of a generation where Disability is kinda scary…
K: They kind of whisk their kids away and shoo them away.
EL: Right, right.
E: But so, the people who were involved and working to get the Americans with Disabilities Act passed, I think they get rightfully frustrated when people of my generation are like, “Well we still have so far to go!” And they’re like, “You don’t know how good you have it!” So, which do you think it is? Is there a balance, do we have it good? Do we not have it good? Can we have it both ways?
EL: I hate to always say I’m a fence sitter but it’s always somewhere…it’s just like Autism is on a spectrum. The whole Disability experience is on a spectrum so I don’t think you can make sweeping generalizations. Starbucks for example I just read is opening up a store in DC where all their staff are going to have Sign Language ability. That’s great, for the deaf community, I think that’s wonderful but is Starbucks really physically a great location for people in wheelchairs? From my experience I have found it to be tight to navigate, I’ve found the bathrooms to be sometimes tight to navigate and so that’s a great experience for one disabled group but maybe not for another.
E: Although, and I don’t know this because I haven’t read too much about it but interestingly when you design with the Deaf Community in mind you actually have to make things much more wide open because they can’t be bothered to move things out of the way because it stops their conversation. So…
K: Oh yeah, wow! Sorry, didn’t mean to interrupt you, a lightbulb just went off in my head.
E: No, but I wouldn’t even say you stand corrected or anything
EL: I just learned something!
E:Yeah, true design for the Deaf Community. Like at Gallaudet University, everything’s wide open, there’s glass everywhere so you can see everyone from like, a stairwell or whatever. So I would say that I’m hoping they design it like that in which case it would be more accessible. But like, I see what you’re saying so their gonna be fostering community for one group of people but in the meantime what are they really doing? Like with the Straw Ban thing…
K: Ugh
EL: Ugh, if I hear about that one more time! Don’t get me started!
K: That’s about our feelings about it at this point!
EL: Focus on Styrofoam people! That’s much more polluting (laughs)
E: Well we did say that was all you were gonna get from us, but not all you were gonna get from Ellen Ladau. Ellen Ladau does not like Styrofoam
EL: If it were up to me I’d bring my own plastic containers to a restaurant for a doggie bag
E: I don’t know why we don’t do that
EL: I don’t know, but okay moving along folks
E: Digression, digression
EL: I’ve listened to enough of your episodes, you have plenty of digression
E: Well sometimes we just have really important thoughts that come out.
K: Agree
E: So what would people want to know then from your experiences. Has your life improved at all?
EL: Oh, that’s a loaded question…Because physically I’m more impacted now than I was as a child. In my mind, my Disability was huge as a child and greatly impacted my experiences but in actuality I feel like I’m more physically impacted now. So is my life better under the ADA? I mean, yeah there’s curb cuts and there’s wide doorways into places and bathrooms I can bring my wheelchair into buuut…I think it depends on how you want me to answer the question.
E: Well, I think you did answer it.
EL: Am I aware on a daily basis of how the ADA is impacting my life? The answer would be “Absolutely no, if Emily wasn’t my daughter”
K: That’s an interesting point seeing that you’re disabled yourself. I find that really fascnating that you would say that.
EL: Emily has brought me along with her for this ride…
E: Not always willingly
EL: Yeah, sometimes not willingly. Of identifying more as a Disabled woman, becoming more educated about Disability issues. It really is in thanks to this Post-ADA generation that some of us old-timers are getting educated and more involved. So I think in that respect it’s very positive.
E: So you’re saying that we’re doing the good work here? Me and Kyle, specifically
K: Yeah
EL: I know you want that answer…I just, I wish…
E: No, we don’t want you to tell us that we’re doing the good work
EL: I wish that 300,000 people were listening to this podcast
K: Well, so do we!
EL: Only because what you’re saying is so important and it’s still within the bubble
E: Yeah, you know that’s something that we come up against all the time. But no, we were actually looking for you to point out that no, we don’t have it so great all the time. Which I think you did! I think you pointed out that sometimes we do have it better and in some ways it’s not all sunshine and roses since the passage of the ADA. I guess I wonder when I’m 57
K: Yeah what are we gonna be talking about then, right? Is there gonna be like an ADA 2? And it’s like, “Now we’ve gotta elevators everywhere but they still don’t work all the time!” You know?
EL: Exactly or will airplane cabins actually be made wider so
E: Or that you can bring your wheelchair onto the plane
K: Never gonna happen, 100%
EL: No, there’s an organization that is working on that
K: I mean, I wanna say…Well because airplanes are wide enough now it’s just that they like to put more seats in so they can sell more seats. And they care more about money than if your comfortable and able to get on a plane.
E: Well I feel like that’s a whole rant unto itself.
EL: If you’re asking if the ADA will create 100% inclusion, I believe the answer is “No.” Because there’s always going to be a new situation that develops that a solution is going to have to be found for assuming there are people still motivated to do that. And many times it’s actually the people that are most impacted by the disabling condition that have to do the work themselves
E: That’s a good point.
EL: When Emily was an infant and she needed surgery and was in a body cast, the advice we were given by doctors on how to manage her was ridiculous. And we had to figure it out on our own and we’re lucky enough to have a talented builder in the family who built special equipment.
E: Yeah, my Grandpa had to build adaptive baby furniture for me because commercial mass-market baby stuff didn’t work for me.
EL: Right. But that was our unique situation and we found a way to solve it. That wasn’t going to get replicated for the entire Disability Community that needed that. I mean, we told the doctors what we did but it was really just up to them whether they repeated it and told the next patient
E: Doubt it
K: I mean, my parents had to dress me in doll’s clothes for the first year and a half of my life. It’s not the same thing as building and engineering adaptive equipment but it’s the same vein of like, “Well you know, mass market baby crap doesn’t work for your kid so, too bad I guess!”
E: Didn’t you fit in a Barbie Car?
K: Yeah. We’ll put that picture up!
E: Kyle was so tiny he fit in a Barbie Car
EL: Oh, wow.
E: Which is adorable. Anyway…Yeah, it’s coming up with your own solutions to things. But also, I feel like at least doll clothes, very smart solution, probably a little more readily available
K: Oh yeah, absolutely! That was just an example that I had.
E: No, it makes sense but even so what are you gonna do? Shop for your kids clothes in the toy store or something?
K: Like, the body cast store?
EL: Can I vent about the single biggest thing that annoys me about
E: Mama Rant a comin’!
EL: Okay. So after Emily got out of these casts and her legs were all this way, we couldn’t get her into a standard child bathtub seat. Her legs just wouldn’t go through those slots
E: I was a very broken baby
EL: And we ordered some custom piece for hundreds of dollars that turned out to basically be PVC pipe and it’s so annoying that adaptive equipment has to be so expensive. And therefore, not really accessible to people.
E: Okay but was adaptive equipment on the market in the same way that it is now? Have we at least made progress there?
EL: Oh yeah, we’ve made progress…almost too far. I mean, the videos I see on Facebook of all these fantastic wheelchairs that can cook pancakes for breakfast
(Emily laughs)
E: Oh my God, what? I want that!
EL: But they’re not available for mass market so what good is it? It’s out of reach
E: If anyone wheelchair designers are listening, I would love my wheelchair to cook me breakfast.
K: You know, it’s easy to critique the ADA now but one thing I think that they should have forseen and maybe included was like, a cap on what the companies can bill wheelchair manufacturers so the price of adaptive equipment isn’t…
E: Well that’s like separate legal stuff all together
K: No, I understand that but they could have thrown that in there so you don’t have to pay like a million dollars to just get around!
EL: And the process you have to go through just to get it
K: Yeah, at least that!
E: That’s totally separate legislation here that we’re talking about. But nevertheless, the point stands
EL: But it could be under the ADA umbrella.
E: Well I think a larger issue that might clarify what you’re talking about… So, the ADA was done in 1990, and technology was not even advanced enough yet that it was majorly incorporated into the ADA
K: Was it at all?
E: No, it is! And the ADA is written to apply to technology and there have been several like, court rulings that point to that but what I’m saying is that the ADA couldn’t have accounted for the world we live in now in a holistic way.
K: Although I think that’s true for a lot of laws, not just Access ones. Like I mean really…
EL: Let’s not get into a Constitutional…
K: No, I know but I mean there are definitely more than just the ADA laws where like the world sped past the legislators there.
E: I think the problem is that we tend to look at the ADA as to being this catchall that’s supposed to give us Civil Rights and ensure that everything is gonna be working smoothly but it really doesn’t account for some of the day to day operations that you just can’t fix with a law. Like the ADA can’t fix whether an elevator is going to work. The ADA can’t fix whether an interpreter is going to be provided. Like, it’s supposed to fix that…
EL: Right
E: But a law does not fix real life situations
K: Yeah but you know what it could. Like one of my biggest criticisms of the ADA is that it doesn’t have teeth or if the teeth that it has have been intentionally weakened by like, thirty years of lobbyists from various groups.
E: Well think about the ADA Notification Bill which was a whole thing going on
EL: Oh with the lawyers?
E: Yeah with the lawsuits. And so then that is intentionally beginning the ADA.
EL: Yeah, people were going around deliberately hunting establishments…
E: So they say…
K: No, I mean it does happen! Like, what you do in that situation is that you fix the ADA so you don’t let that happen, you don’t just scrap the whole thing!
E: No, they were trying to fix it but in such a way that puts the onus on the Disability Community.
K: Yeah no, I remember it was dumb. And you know, that’s putting it mildly. I’m just saying, I don’t think you know, in areas where the ADA should apply and doesn’t, the ADA as it sits doesn’t give any like, resources or recourses to what to do. Like, “Oh, this building that isn’t accessible, should be? What do I do now? You know, I call some office and report an ADA violation and they’ll get back to me in 25 years.”
EL: Yeah, I don’t think that’s common knowledge. But I think what you guys are struggling with, is that the way you keep raising the question Emily, is “Does this current generation have it better under the ADA than those who fought to pass the ADA? And that infers or implies that
There’s some type of competition or some type of tension between the generations…
E: Well there is! I’ve experienced it firsthand!
EL: And I think that’s totally counterproductive, and the question shouldn’t be “Who has it better now?” but, “What can we all do to make it better?”
E: Well I mean, can you even say anything smarter than that?
K: That’s the most Kumbaya ending to an episode, ever.
(Ellen chuckles)
K: No, but I mean, you’re absolutely right
EL: Oh, I promise I won’t sing
Emily starts singing, “Kumbayaaa, my Lord!”
EL: Okay Emily
E: No? Okay
EL: She sung first!
K: And she’s the only one left doing it
EL: Yup
E: Well that wasn’t a very Kumbaya moment if no one was going to sing with me, but anyway…Well I just want to give a disclaimer to anyone who have listened this far that as evidenced by some of the back on forth on what the law says and things that have been set forth to alter the law, amend the law, weaken the law, we’re not legal experts here…
K: Oh yeah we are not lawyers, we are the opposite of lawyers, guys
EL: Yeah, I’m not nearly as educated as you guys so…
K: We can barely even read!
(Emily and Ellen laugh)
E: Anyay, but I wanted to put that disclaimer anywhere in case anyone hears anything that sounds like it was misinformation or like if we didn’t know what we were talking about, we’re just three people who were having a conversation
EL: And I was invited to this conversation last minute so it as spontaneous!
K: Thank you so much by the way!
EL: You’re welcome
E: Well, because you can’t plan your answers for the Podcast, or it’s no fun!
EL: But I do believe I did write something…Was if for your Vlog? Or I think it was for the Disabled Parenting Project
E: We will find that!
K: If you find it we’ll put it up in the thingy- thing, in the description.
EL: About my bad experiences. About how Emily’s experiences growing up were different than mine.
K: Oh yeah, that was pretty much what we were trying to get at so that’d be great!
E: Yeah, I mean, I don’t even know if we dove into the specifics of me growing up versus you growing up but we can definitely…
EL: Another episode!
E: Yup!
K: Next year in the ADA Month of July
E: In honor of the ADA Anniversary?
K: Sure
E: Anyway…Final Takeaways–Go!
K: ADA’s good but maybe not good enough in some areas, and maybe too good in others and we should just like, make it better guys! But it’s not perfect!
EL: That sounds good enough to me! There’s a lot of work still to be done, let’s just leave it at that
E: That’s a good Final Takeaway
K: Agree. Thank you so much, Ellen!
E: Thanks for listening! Yeah, thanks for being on our show
EL: Oh, my pleasure! Goodnight
K: Goodnight
E: Bye!