Preview Mode Links will not work in preview mode

The Odyssey: Parenting. Caregiving. Disability.

  1. All Episodes
  2. Does the ADA Need a Makeover?

Jul 25, 2023

An estimated 1 in 4 Americans has a disability significant enough that it impacts their daily life. 

When the Americans with Disabilities Act was signed into law on July 26th, 1990 it was celebrated as groundbreaking legislation that would grant access to jobs, schools, transportation, and public spaces. 

More than 30 years later, the ADA is showing its age. 

Advocates argue that while the ADA banned disability-based discrimination, people with disabilities still have to fight to be included. Long-standing policies make it difficult for many people to find meaningful employment, obtain sufficient housing, relocate, and, in some cases, get married. 

Rapid advances in technology can be hugely benificial for disabled people. But the lack of best practices and understanding of what accessible means for different disabilities often places the burden of access on individuals. 

It's time for a change.

This is why we reached out to Matthew Shapiro and Lilith Holmes. Matthew is a public speaker, consultant, and founder of 6 Wheels Consulting. Lilith is a high school student and fierce advocate who plans on going to medical school. 

Listen and learn about the challenges they see in their lives and their advocacy work and how we can make meaningful improvements. 

The Odyssey: Parenting. Caregiving. Disability. 

The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 

 

 

 

 

TRANSCRIPT:

01:00:07:19 - 01:00:39:16
Erin Croyle
Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, The creator and host of The Odyssey podcast explores the turn our lives take When a loved one has a disability. Even though an estimated one in four Americans has a disability, so many obstacles that interfere with simply existing remain. I learned this immediately after my first child was born with Down's Syndrome in 2010.

01:00:39:18 - 01:01:07:17
Erin Croyle
Instead of celebrating this beautiful baby, everyone around us, from doctors to friends to family, was saying sorry. Instead of joy, I felt devastation. I dug out of that pit of despair by first educating myself and later advocating for the human rights that we all deserve. That journey brought me here, working for the Center for Family Involvement at VCU's, Partnership for People with Disabilities.

01:01:07:19 - 01:01:22:09
Erin Croyle
This podcast explores the triumphs and the hardships, will revel in how amazing the odyssey of parenting, caregiving and disability is. But we won't shy away from the tough stuff either.

01:01:22:11 - 01:01:53:14
Erin Croyle
The Americans with Disabilities Act is indeed both marvelous and deeply flawed. When President George H.W. Bush signed it into law on July 26, 1990, it was groundbreaking. The ADA banned disability based discrimination granting access to jobs, school transportation and public spaces. 30 plus years later, the ADA is showing its age. In fact, some advocates point out that the legislation failed to shift mindsets.

01:01:53:16 - 01:02:19:03
Erin Croyle
So while there are laws in place, institutions and individuals have to be reminded to abide by them. And sometimes that can be a fight that folks don't have the time, energy or resources to take on. This is why I had to talk to Matthew Shapiro and Lilith Holmes. Matthew is a consultant and public speaker. Lilith is a high school student who is the epitome of self-determination.

01:02:19:05 - 01:02:27:07
Erin Croyle
Both of them were born after the ADA came to be.

01:02:27:09 - 01:02:46:04
Erin Croyle
Matthew and Lilith, I'd like to start with you telling us a little bit about yourselves. Given what we're talking about, I think it would help the listeners if you could also explain a bit about your disability for context. At the same time, reminding folks that somebody's disability is nobody's business. Matthew, let's start with you.

01:02:46:06 - 01:03:10:19
Matthew
Sure. So I'm very excited to be here for a wonderful conversation on such an important topic. For me, I am in my early thirties and have known the ADA all my life. I was born in 1991, so I have grown up with the ADA. I am a person who is in a wheelchair due to being diagnosed with cerebral palsy.

01:03:10:21 - 01:03:35:07
Matthew
Basically that means that the messages don't get from my brain to the rest of my body effectively. And that requires me to use a wheelchair to navigate this world that we all get to inhabit on a day to day basis. And yeah, I think your intro really hit it on the head, right? I think there is a lot of improvement that needs to be done around the area.

01:03:35:07 - 01:04:01:24
Matthew
And I, I've often said that we one needed to have another disability rights movement, but to really needed to be intentional about updating it because we are currently in a world where the issues and challenges that were faced in 1990 are still issues and challenges today and 2023. We are not focusing on the next generation of challenges that are affecting the disability community.

01:04:01:24 - 01:04:20:05
Matthew
You know, digital access, work from home, shortages in care, attendance like those were issues back then, but they're even more so issues now because we haven't addressed transportation, we haven't addressed employment that were issues when the bill first passed. So there's a lot of ground that I think we still need to cover.

01:04:20:07 - 01:04:54:07
Erin Croyle
Absolutely. Before Lilith, we go to you, I want to just point out, Judy Heumann, amazing woman, amazing advocate who passed away recently when she was advocating for the ADA. She was citing Section 504, part of the 1973 Rehabilitation Act. And so her advocacy was actually updating legislation and guidelines that already existed. And so it's interesting to be having this conversation now and you mentioning having another movement because it makes total sense were overdue.

01:04:54:09 - 01:05:01:03
Erin Croyle
But we can dive into that more later. Lilith, can you go ahead and tell us a little bit about yourself?

01:05:01:05 - 01:05:19:23
Lilith
Hi, I'm Lilith Homes. I was born in 2008 and I have albinism, which causes a loss of pigment in my entire body. That affects my vision because I have nystagmus and I have no pigment in my retinas black light. So I have to use a white cane for accessibility.

01:05:20:00 - 01:05:20:05
Erin Croyle
And.

01:05:20:05 - 01:05:43:22
Lilith
I read Braille. My school is a public school, but I go to a magnet school for profoundly gifted students. And while that has definitely been an amazing experience, the shortcomings of the ADA are highlighted by some of my teachers' actions. I'm not going to go too deeply into that, but I definitely feel as the world develops, the ADA should develop with it.

01:05:43:24 - 01:06:07:12
Erin Croyle
A moment ago I mentioned that disabilities are no one's business, but in order to get those accommodate and we do have to disclose our disabilities. So this is of course, a complicated question. Some disabilities are obvious, others are invisible. But a lot of times we apply for things without ever meeting somebody. You know, you you need to know what to disclose and what not to.

01:06:07:14 - 01:06:13:24
Erin Croyle
And it's like walking a tightrope. Matthew, we'll start again with you. How do you manage that?

01:06:14:01 - 01:06:33:20
Matthew
I get asked this question a lot, right? And it's always been a situation where I pretty much immediately disclose that I am a person with a disability for a number of reasons. Right. One. Like, let's say I'm doing a job interview, right? That job interview needs to be in a location that is wheelchair accessible. I'm a power wheelchair user.

01:06:33:22 - 01:07:05:20
Matthew
I have to be able to access where the interview is taking place. And so it's always in my view that if I'm not telling someone that that is a need, then then I could be walking into a situation where, you know, like the interview is on the second floor and they don't have an elevator. I've also always found that if you disclose, you're sort of getting out in front of it and you're, for lack of a better way of saying it right, you're not making things awkward when you are all doing things.

01:07:05:22 - 01:07:44:20
Matthew
I understand how people with invisible disabilities may not feel the need to disclose, but I always tell people as soon as I roll into a room, you see my wheelchair and you know that clearly I have something going on. You might not know what the specifics of it are and you might not know how it affects me, but I think it's really important to help put people at ease in having that conversation right away, you know, where they're not having to guess, they're not having to assume what my accommodations are.

01:07:44:22 - 01:08:07:19
Matthew
And you are developing a rapport with either your direct report, if you're working at a job or someone else that is in a position of power to help navigate. All right, Matthew, we've had this conversation. What can we do to help? You know, you have made us aware that, like, these are what your struggles are in the workplace or in any environment.

01:08:07:24 - 01:08:24:09
Matthew
What can we do to make that more easy for you? And I think without disclosing that, you know, that conversation can be more tricky. So I've always been very open minded and very direct in my disclosure of my disability.

01:08:24:11 - 01:08:50:16
Erin Croyle
Matthew, I want to follow up with that, though, because you have a consulting company and the work you do is very much disability related. And so in your circle of friends, in the people that you consult with, do you see something different though? Do you see people denied interviews if they disclose? Because there are stories of that and reports of that happening?

01:08:50:18 - 01:09:14:05
Matthew
Yes, I haven't seen that directly. But you're right that there are stories of that happening. A lot of what I get is how do we handle it Right? And it's a situation of, I would argue, being prepared to handle it both ways. Right. Be prepared for someone to disclose, but don't expect that they would write again. If you're using me as the example, I would disclose.

01:09:14:05 - 01:09:36:21
Matthew
I don't know how Lewis feels. I don't know how the next person with disabilities feel, but I think as a as an employer, be prepared for both and be good at handling both so that if someone discloses, you know, how to deal with that and if they don't, you have the system in place to help guarantee that they are successful in that role as well.

01:09:37:01 - 01:09:58:00
Matthew
Because I think the opposite of that is true as well. Like if they don't disclose and then they're struggling because they didn't disclose it, you know, does that is that a detriment to them and their ability to be able to do their jobs? Probably there's not a right or wrong answer to that question. And right like it varies person to person.

01:09:58:00 - 01:10:10:15
Matthew
And that's that's an argument I would make for disability wide on any number of topics. It really does come down to communication and what the person's personal beliefs are.

01:10:10:17 - 01:10:30:23
Erin Croyle
Well, as your situation is different, I mean, you're in high school, but I'm sure you face a whole sort of different dynamic. You're also looking ahead to the future. I mean, you're I assume college applications and all sorts of things. I would love to hear how different your experience is.

01:10:31:00 - 01:11:00:16
Lilith
Well, my parents haven't yet kicked me out of the house and said, get a job. So I haven't yet had the job interview, but I have had to do interviews. When I applied for specialty centers and I had to tell them that I had a disability not because they needed to do anything special for me just for the interview, but because if I were to go to that school, they would need to have a system in place to help manage my accommodations.

01:11:00:18 - 01:11:24:16
Lilith
But it seems just like everywhere in public, people want you to disclose your disability. They ask you more questions than a doctor would most of the time. So I think it is up to the individual. But disclosure of your disability is important to those who need to know. But if the random strangers walks up in public and goes, what's wrong with you?

01:11:24:17 - 01:11:35:00
Lilith
Because they see me with my cane, Matthew with his wheelchair and they would just march up and go, What's wrong with you? Do you need help? I think that's not appropriate.

01:11:35:02 - 01:11:45:01
Erin Croyle
Yeah. And that level of discrimination just exists in this weird vacuum where people are completely clueless.

01:11:45:03 - 01:12:07:21
Matthew
Can I. Can I piggyback on that? To work with what Little said. I agree with what she said. Right. In terms of when people randomly come up to you and say, hey, what's wrong with you? What's your disability? I can make an argument for the opposite of that too, though, because I've always viewed that. And again, there's no right or wrong answer in this situation.

01:12:07:23 - 01:12:31:19
Matthew
I've always viewed that as an opportunity to educate and to expose people to disability, particularly younger youngsters. And I've frame that. I've always framed that as like my grocery store story, right? Where a little kid will see me in the grocery store and you get to look all the time, right? They'll see me with my wheelchair and their eyes will get as big as saucers, right?

01:12:31:19 - 01:12:56:09
Matthew
Because they're so surprised by this device that I'm using to navigate the world. Oftentimes, if I'm in a space where I notice that they're doing that and I'm in a space where they can be safe with it, I will let them engage with my wheelchair, right? I'll let them drive my chair a little bit. I'll let them push the buttons on the chair that are the lights and the horn and stuff.

01:12:56:11 - 01:13:22:11
Matthew
But nine times out of ten, the parents will come up and snatch the child away before that interaction can really take hold. And I think that does a couple of things, right? It it reestablishes like stranger danger, which I understand. I'm not I'm not advocating for people to speak to strangers, but I'm open. I'm open, I'm honest, I'm very approachable.

01:13:22:13 - 01:13:41:11
Matthew
And then it also reignites the stigma around disability. I'm like, Oh, that kid. The next time they see some disability, they're gonna be like, Well, I went and tried to talk to Matthew, right? And when I did, my parents got mad at me. So I'm not going to try and engage with that next person that I see. And I don't think that's the right strategy either.

01:13:41:11 - 01:13:54:13
Matthew
Right? Because we need to be teaching inclusion. We need to be teaching that all people are valued. If we're doing that, we're setting up young people for misinformation, I guess is the right way to describe it.

01:13:54:15 - 01:14:22:23
Erin Croyle
That is such an important point and it's nice to hear that you still have the patience and tolerance for that. I think it is easier with children and I think too, it's different with intellectual disabilities and disabilities where communication is difficult, it scares people. I find it really strange with my son having Down's syndrome, you know, when he was little it was cute and people looked at him with adoring eyes.

01:14:22:23 - 01:14:36:08
Erin Croyle
But he's, you know, almost 13. And as he gets older, it's it's a lot of stares, which actually to me because it's quite a common disability and people stare and they're not kind stares.

01:14:36:10 - 01:14:57:09
Matthew
Yeah and honestly that will get worse before it gets better right? I ran into that same situation when I got like when I was younger, I was the cute kid in the wheelchair and everyone wanted to push me around and and all those things. But then when I got into like middle school and older, like, I wasn't frankly, I wasn't necessarily invited to parties.

01:14:57:09 - 01:15:27:09
Matthew
And so I had to create my own social circles and my house became the hangout spot. But now as an adult or I try to act like an adult on a regular basis, I still feel like I'm a kid at heart as an adult, right? Like, I have the tools and the skills and the, you know, my parents let my friends drive my van on a regular basis, so I go out with them whenever I want and I have ramps to get into people's houses so I can, you know, go hang out at different places.

01:15:27:11 - 01:15:31:16
Matthew
But it changes. I think people need to be aware of that.

01:15:31:18 - 01:15:59:01
Erin Croyle
I love that you said this because I want to talk about, like what perceptions of disability and accessibility are because it's one of those factors of an inclusive community that people don't really understand. I think unless you are part of the disability community, when you hear accessible, you think maybe wheelchair accessible and maybe Braille, but it's so much more than that.

01:15:59:03 - 01:16:16:05
Erin Croyle
It's screen readers, it's using camel case. When you do hashtags for those that don't know, it's capitalizing the first letter of a word. So a screen reader will read it as a separate word and the hashtags are not legible. The screen reader without that.

01:16:16:07 - 01:16:19:08
Matthew
See, I didn't know that. See, like I just learned something.

01:16:19:10 - 01:16:45:11
Erin Croyle
Right? And well, so there are best practices and standards that we are not practicing best practices as a society. I often think, how can we change that, you know, as we wait? I don't I don't feel like there's a movement to update the ADA. What would you want to tell the world about accessibility and what it means to different people?

01:16:45:11 - 01:16:51:01
Erin Croyle
And Lilith, since Matthew and I have been dominating, I would really love to hear from you first.

01:16:51:03 - 01:17:19:21
Lilith
Oh, of course, I. I feel like a lot of people think accessibility detracts from something like putting your Facebook post in legible font importing image description somewhere in. It makes your posts meaningless. But I want people to understand that accessibility doesn't just benefit the person who needs it. It can also sometimes benefit people who don't necessarily need it, like some people I've heard of.

01:17:19:21 - 01:17:42:12
Lilith
They use closed captions when watching TV, even though they are not deaf. It just helps them focus more. And I'm not saying that people without disability should go gung ho and taking up all the resources, like just standing in the wheelchair ramp like some people at my school do. But I just want people to understand that accessibility is important for everyone.

01:17:42:18 - 01:17:52:12
Lilith
It is not just something we have to do to make the disabled person be quiet because that's just not very nice. And yet a lot of people say that.

01:17:52:14 - 01:17:54:04
Matthew
Well said.

01:17:54:06 - 01:18:06:14
Erin Croyle
Exactly what else do you experience at school, Ellis? I mean, what sort of things are you asking for that come across as as like a burden, if you will?

01:18:06:16 - 01:18:26:05
Lilith
I wouldn't like to throw my school under the bus too much, but a lot of some of my teachers have been treating my IEP as optional or complaining about it or acting like it takes away from the whole class. If they write in a legible font and make their mouth bigger than an end on the screen. I mean, when they're presenting it.

01:18:26:07 - 01:18:40:10
Erin Croyle
You know, it's funny, as is aware, as I like to consider myself, I didn't even think of font size. That is such a simple thing to adjust. And you find folks not wanting to do that.

01:18:40:12 - 01:18:46:06
Lilith
Yes, many folks think that it's just too much effort.

01:18:46:08 - 01:19:11:11
Erin Croyle
It's interesting, when I was researching ahead of this interview, you know, just thinking outside the box about accessibility, modifying door handles for someone whose arms, you know, maybe you don't have hands. I know in my own personal experience with a child who eloped, having access to fenced in playgrounds that had gates that were childproof was a lifesaver. And it's hard to come by those.

01:19:11:13 - 01:19:37:08
Erin Croyle
I find that I run into roadblocks because people find fencing to be almost related to jail, but that's keeping kids alive. How can we find a middle ground on what is aesthetically pleasing and what is a safety issue? It's actually hurtful to see how little people want to change. Matthew. I mean, being someone using a wheelchair, you must see it all.

01:19:37:10 - 01:20:09:19
Matthew
It is quite an adventure to navigate the world from a seated and six wheeled situation. People think that the bare minimum of accessibility, meaning ADA, compliance and different things like that is all that we need to be doing when in truth and in reality. In my work, I always challenge people to say, Let's go above and beyond what's required by the ACA to make the space as most accessible and inclusive as possible.

01:20:09:21 - 01:20:40:16
Matthew
What does that look like? Well, that could be open floor planning, right? Where there's not. You're not in a space that is cluttered by desks or extra staff around the place, like extra boxes and extra cabinets and extra, you know, whatevers that take up additional space for from an accessibility standpoint, whether you're a wheelchair user, whether you're like Luis and how it cane, whether you're somebody who uses a walker, all of those things matter.

01:20:40:18 - 01:21:03:18
Matthew
And one thing that often blows people's minds and I was talking about this on a panel I was on recently, carpeting is super important. If we have a carpet that has like a design in it, if you're navigating that space as a wheelchair user, that design is going to pull you in a certain direction because of how the thread on the carpet is.

01:21:03:20 - 01:21:27:04
Matthew
And so when I'm working with my architect clients and my builder clients, I'm saying like get rug that doesn't have design in it because it's going to make it easier thinking about layouts of of office spaces, right? Thinking about instead of having, you know, if you have a bunch of desks, make them all standing desks so that that is immediately accessible to everyone, right?

01:21:27:04 - 01:21:45:04
Matthew
I can go up to my desk and I can push a button and that raises my desk up. You know, I'm coming to you from my office right now. And over Christmas, my my parents bought me a standing desk for accessibility purposes so that I could in programing I could raise my desk up in trying to navigate under my desk.

01:21:45:04 - 01:22:01:24
Matthew
I can raise my desk up. I now love this desk, and it makes me so much more productive. You know, we've got to think about sidewalks and spaces to get to and from spaces, you know, are that are the stones coming up through the sidewalk? Are they compliant? Are there curb cuts compliant? You know, all of those things.

01:22:02:01 - 01:22:23:04
Matthew
So my brain is constantly evaluating and looking for the right path and looking for the right way to go about things. I would love a day when, you know, I could go somewhere and not have to worry about that. I think we're a long way from that, but that is definitely a goal that I would like to see achieved.

01:22:23:06 - 01:22:51:13
Erin Croyle
As someone who's 45, I remember in 1990 the buzz around ADA, but I was quite young then. Still to not fully understand how amazing it was. And you know, people with disabilities were segregated quite a bit still. So I didn't know anyone who could share with me the impact of it. But I remember very well the conversations around businesses not wanting to comply and being angry and complaining about costs.

01:22:51:15 - 01:23:19:17
Erin Croyle
And to some extent I get that because small businesses can't afford to change everything. But at the same time, here we are, 33 years later and I see new constructions, I see remodeling and a complete failure to try to use universal design for living. I don't understand why we can't do ramps. I don't understand why any public bathroom does not have an adult changing table.

01:23:19:17 - 01:23:27:09
Erin Croyle
You know, I don't understand why showers cannot be fully accessible. It it is heartbreaking.

01:23:27:11 - 01:23:51:02
Matthew
There's an element to where I think the most exhausting thing for me and I'd be curious to know your thoughts with your son and know if I would like to know this from YouTube. But the amount of planning that is required to make sure that like, okay, we're going to go to this restaurant or there's very little that can be done spontaneously as a person with a disability because we want to go to this restaurant.

01:23:51:02 - 01:24:13:23
Matthew
Well, Darren, there's a step to get in there. Well, how do we do that? Do they have a ramp? Oh, we'll carry you in. No, you won't. Right. Like there's all these things that occur or, you know, we want to go stay at this resort. Well, you only have one room with a rolling shower and somebody is using it and they don't have beds that are for limited beds for somebody like myself who uses a royal lift.

01:24:13:23 - 01:24:29:01
Matthew
And for those that don't know what a horror lift is, it's a piece of equipment that can be rolled under the bed that will help you transfer from your wheelchair to the bed. And in order to do that, you have to be able to roll it underneath the bed. But nine times out of ten now we have platform beds.

01:24:29:03 - 01:24:51:21
Matthew
Those are just a couple examples. There is a laundry list of things that you have to concern yourself with before you even try to do something on a day to day basis. So yes, it's part of life. But again, I would love a scenario where that would not be required. But as of right now, because of the way the world is set up, it is still required.

01:24:51:21 - 01:25:00:02
Matthew
And that's what motivates me to try to change the way we have these conversations in the work that I do.

01:25:00:04 - 01:25:04:12
Erin Croyle
Before I say anything little, if I'm curious what you have to say.

01:25:04:14 - 01:25:28:23
Lilith
Sorry. Yeah, I agree with that. I feel like it's difficult not being able to just get up and go somewhere and enjoy it without wondering, okay, who is going to fall and break their nose on the steps and on the bathroom signs actually properly labeled because I think I mentioned this on a panel. The bathroom sign at Barnes and Noble and Braille.

01:25:28:23 - 01:25:52:12
Lilith
It was upside down. And so pointing that if you put your finger on it, you'd stop yourself. So, yes, I feel like it's difficult with the lack of universal design to be able to do anything without a lot of careful planning and agonizing over Is it worth the risk? Should we complain to them? Stuff like that.

01:25:52:14 - 01:26:12:00
Erin Croyle
But I want to ask you to to tell us a little more, because I think, you know, we know a lot of things that happen with wheelchairs, but I don't think there's a great understanding of folks who are visually impaired because I think there's a perception that you have a cane or a guide and that's it. You're fine.

01:26:12:02 - 01:26:16:18
Erin Croyle
So can you tell us a little more about some of the daily obstacles you face?

01:26:16:20 - 01:26:46:21
Lilith
It's hard when the crosswalk is not very visible crossing the road, but when I go outside, I cannot see anything at all because I have no pigment in my eyes to block the sun. So I just can't see anything at home. So it's very hard crossing the road when you have this guy in the car waving and waving and waving and waving and waiting for you to go because you think he thinks you can see his hand or when the sidewalk is bent up and cracked, because that's hard for me to navigate with my cane.

01:26:46:23 - 01:26:54:14
Lilith
I think it's hard for most people to those with disabilities and without to manage that anyway. But it's very hard to see.

01:26:54:16 - 01:27:15:20
Erin Croyle
It's interesting to me too. I find a lot of the hurdles are our fellow humans; people leaving bikes in the curb-cut outs or things on sidewalks, or just standing there and not being aware of those around them, just in their own little bubble of reality. And it's not a universal reality.

01:27:15:22 - 01:27:37:06
Matthew
Well, and I think that's so interesting, right? I have a couple of thoughts on what Lewis said. First of all, the fact that Barnes and Noble has the Braille sign upside down, like that's a problem. Like somebody didn't install that properly. So like, what are we doing to fix that? I can't tell you how many times I'm on the sidewalk, right.

01:27:37:08 - 01:27:55:22
Matthew
And somebody is walking towards me and they're doing the universal. I'm on a sidewalk from my head down and I'm going to be looking at my phone situation. I stay on my path. I do not move because it is not my job to move for you. You need to look up and you need to realize, Oh, I'm about to run into somebody in a wheelchair.

01:27:55:24 - 01:28:16:23
Matthew
And a lot of times when that happens, to your point, hearing like people not being aware of what's going on around them, they'll hit me and look at me like it was my fault. When you got your head down in your phone and you're not paying attention to where you're walking. That happens to me more than I would like to admit.

01:28:16:23 - 01:28:23:20
Matthew
It is a frequent occurrence when I'm in big cities like New York, DC, places like that.

01:28:23:22 - 01:28:50:11
Erin Croyle
Yeah, you see that everywhere. It's a lack of empathy and a lack of knowledge. And quite frankly, ignorance. I think as a society we still look at disability as this thing that will never happen to me. But one in four Americans. That means pretty much either you or someone you love will have a disability that impacts your daily life before you die.

01:28:50:13 - 01:29:14:11
Erin Croyle
And I talk about this when I speak to university students about inclusion. I feel like my dad is a really good example and I'm a good example of that. I didn't know anyone really with a disability until my son was born. He was the first person I met with Down syndrome. Because of that. I think part of the devastation I felt when he was born was just not knowing anyone because we just pretend it doesn't happen.

01:29:14:13 - 01:29:40:15
Erin Croyle
And then my father had a stroke and he had to use a wheelchair and it was devastating for him. And my mother, who's a nurse, but old school used the word invalid, you know, to describe him, which to me is one of the most hurtful, awful words you can use to describe a human being to to say invalid, which is essentially invalid.

01:29:40:17 - 01:30:03:13
Lilith
What I mean about a lot of people, they they don't know they're doing it well, or maybe they do, but they say a rude word like retarded, invalid, stuff like that. And I'm not sure how many of them know that they're saying something. They really should not say someone with a disability. But that's just it's very hurtful even when they don't mean it.

01:30:03:15 - 01:30:13:18
Matthew
So and it's interesting that you say that. Well, is right when I run into a lot of times, as I'm glad you're out today. Right. I'm glad you're here.

01:30:13:20 - 01:30:15:05
Erin Croyle
Oh, my God.

01:30:15:07 - 01:30:18:22
Matthew
Oh, I get it. I get it regularly and my such.

01:30:18:22 - 01:30:20:22
Lilith
Oh, I'm sorry. I didn't mean to interrupt you.

01:30:20:23 - 01:30:23:13
Matthew
No, no, go ahead. Well, the such an inspiration.

01:30:23:13 - 01:30:26:09
Lilith
You're so brave. You got up this morning and came to work.

01:30:26:13 - 01:30:45:13
Matthew
Yep. Yeah, It's that or it's. I'm glad you're out today, right? And my friends have gotten to the point where they'll make jokes with me, like, Oh, I'm glad you're out to do that, but they'll, like, Come pick me up. Right, and do all the things like the language we use is so important. I am not to love your point.

01:30:45:13 - 01:31:13:03
Matthew
I'm not an inspiration because I wake up every day and I put my pants on my messages might be inspirational. My way of doing my work might be inspirational, but just because I live my life doesn't make me a godlike figure because I'm quote unquote, overcoming my disability. I'm not overcoming my disability. Right. I'm living with it. I am living to love it.

01:31:13:03 - 01:31:44:08
Matthew
I am living to navigate life with it. I have the same wants, desires and needs as everyone. At 32, I'm actively in the dating scene and let me tell you, it's an adventure and it's it's hard to deal with all of that as a person who uses a wheelchair, frankly, because society doesn't look at you in a romantic sense, which is hard.

01:31:44:10 - 01:32:14:09
Matthew
So I'm dealing with the same things people my own age are navigating as nondisabled folks. But there are elements that make it harder because you're having to break through societal misunderstandings more than anyone else. Sorry, I went on a soapbox for a second, but it's it's very, very hard and is very, very frustrating that you have to jump over five hurdles before you get what you want.

01:32:14:11 - 01:32:32:14
Erin Croyle
I have to ask you a question which is totally off topic, and then we'll jump back. And maybe this is a topic for another episode, but someone recently asked me, you know, they have dating apps for almost every niche anywhere. I mean, do they have specific dating dating apps?

01:32:32:16 - 01:33:03:04
Matthew
They do. However, and this is not a not a lot of those people are older. A lot of those people are into weird fetish things. And so for I'm a younger person, I am 32, right? I'm not trying to date again, like not a knock. I'm not trying to date someone 52. And so, yes, there are, but the pool is not as vast, if that makes any sense.

01:33:03:06 - 01:33:17:16
Erin Croyle
It makes total sense. And I don't see any reason why you wouldn't want to date someone without a disability. It doesn't make sense to have a separate app, but yeah, but that's to me, that's cutting down on the dating pool for you.

01:33:17:18 - 01:33:21:18
Matthew
I honestly would go ahead with this and then I'll. I'll add again.

01:33:21:24 - 01:33:58:00
Lilith
I'm sorry, it's very hard because I am not look any way looking for a life right now but when I get to that phase, if I am going into an area where people are more likely to fall in love with each other, I would not like if someone were to walk up with me, I would. To me, I would prefer them to say, If you want to go on a date rather than, Oh, you're so inspirational because it's ability, as sad as it is, that people don't see people with disabilities in a romantic way, they see them as inspirations or less nice things.

01:33:58:02 - 01:34:22:21
Matthew
As somebody that is navigating that now, you're right. And Erin, I'm I'm on traditional dating apps like I'm on the bumble's of the world. I was on eHarmony for a while. I was on match for a while. And there are hurdles not to be completely got off topic of the conversation, but there are hurdles that are really, really hard to get through.

01:34:22:23 - 01:34:51:20
Matthew
And here's the other thing. And I've said this to my therapist. I've said this to my parents. I've said this to a lot of people. I feel like my like I'm doing things now in the dating world that you would typically probably do in your early twenties. And so I have felt stunted by all of that because people when I was growing up again, I was like the best friend.

01:34:51:20 - 01:35:14:07
Matthew
And you know, for a lot of people it's still the case because I am a genuinely gay. People don't often view me in a romantic sense. But what people don't know, it's like I'm going to treat you how you're supposed to be treated, right? And I'm going to be the best partner out there. But then the other element to that is there's more that comes with the relationship with me than than a traditional relationship.

01:35:14:07 - 01:35:31:05
Matthew
So I don't want to get us too far down the rabbit hole. But yeah, it's a fun it's a fun thing to explore. And by fun, I mean, that's fun, but not fun. I mean, argh! But we're, we're doing what we can.

01:35:31:07 - 01:36:14:16
Erin Croyle
Well, I love a good Segway, and actually, I think is the perfect Segway because you mention hurdles and I'm thinking about how we view disability in this society and how it impacts people in lack of understanding impacts everything from dating to universal design to how we build structures. A lot of times when I have to work with my son and help my son get access to the things he wants to do, his level of accessibility is more about changing mindsets because when you have an intellectual disability, everything's hard from communication to acceptance to just doing things.

01:36:14:16 - 01:36:41:16
Erin Croyle
And we've had situations where, for example, I wanted my son to be on the local swim team. He loves swimming. He is not going to swim like the other kids. And I had to jump through hoops even in this city that considers itself inclusive, but not really jumping through hoops with people who consider themselves inclusive and who are amazing people.

01:36:41:18 - 01:36:54:13
Erin Croyle
It was hard and it was a lot of work on my part and he's on the team and it's great. But the process of getting them there was not it was not accessible.

01:36:54:15 - 01:37:02:08
Matthew
How is it now that he's on the team like what's that like? But granted, there were challenges getting him on the team. But what's it like now that he's on the team?

01:37:02:10 - 01:37:21:23
Erin Croyle
Well, the irony, Matthew, is it's a noncompetitive swim team. So the fact that it was hard to get him on the team is ridiculous. We found a great person to help him. That was part of allowing him on the team, was having a support person in the pool with him and he's doing okay. He's a good swimmer. Maybe he doesn't get the exact stroke he should be doing at that time.

01:37:21:23 - 01:37:29:23
Erin Croyle
Right. But he's an athlete. It's just he doesn't, the competition part isn't something he cares about, but I think that will come.

01:37:30:00 - 01:37:33:04
Matthew
Yeah, well, and it sounds like he just likes being in the water.

01:37:33:06 - 01:38:06:23
Erin Croyle
Water? Yeah. Waters is his happy place. Yeah. So when I think about that story and I share that story, I share it because everywhere I see roadblocks, it's due to ignorance from the schools to our buildings to our mindsets. And I say this again when I talk about inclusive schooling, I do not understand how we are not teaching about disability more in schools, both in our public schools, where we go every day, but also higher education.

01:38:07:04 - 01:38:34:23
Erin Croyle
Because when we're talking about accessibility in school, when we're talking about universal design, maybe if our architects and engineers understood things like ramps and how showers should be designed and platforms that are needed for beds, maybe then that could be best standard practices. And the other thing that I find is because our mindset mindsets have not shifted. People don't think they'll ever become disabled.

01:38:34:23 - 01:38:54:13
Erin Croyle
And so they're putting in steps and multiple floors and spiral staircases. And there's just this lack of understanding about how we could create things that are accessible and beautiful and everyone can enjoy them. And it means that you can enjoy it for a lifetime no matter what happens to you.

01:38:54:15 - 01:38:56:17
Matthew
Well, do you want to go first?

01:38:56:19 - 01:38:58:04
Lilith
I'm sorry, I didn't hear.

01:38:58:07 - 01:39:39:09
Erin Croyle
There's not really a question there I love. I'm curious, in your experience, if I could turn this into a question, if you think things would change, if we would introduce disability history, but also the needs for accessibility and modifications both in our public schools, grade schools, secondary, but especially in higher education. So for example, if every teacher, even if you're not planning to be a special ed teacher, but every teacher took special ed classes to understand idea, to understand how powerful and important teaching is, to understand different disabilities, and how adapting a classroom can help all students.

01:39:39:12 - 01:39:50:18
Erin Croyle
If architects could do these things, what impact do you think that could have? Lilith And what would you want to see change to help impact that universal change?

01:39:50:20 - 01:40:22:19
Lilith
I think that educating people on disability access would be very important because there are several ramps that I've seen so far that make Mt. Everest look accessible. Educating people because it isn't just wheelchair ramps, it's everything educating people about disability and how to make things accessible, which is very important. People should understand these things because most people have never even heard or had never even met someone with a disability.

01:40:23:00 - 01:40:43:06
Lilith
And they are very confident, I'm never going to be disabled, I'm fine. And then they wake up one morning and they're disabled and then they're just they don't know what to do with themselves. So I feel like teaching people about disabilities and accessibility wouldn't just benefit people in the disability community, it would benefit everyone.

01:40:43:08 - 01:41:04:00
Erin Croyle
And Lilith, how do you think if we had already started that, if this had been something that had been a part of the ADA that we would introduce learning about disability in our education systems to change mindsets, how different do you think your life could be if that had been something that had happened?

01:41:04:02 - 01:41:19:15
Lilith
I think it would be different. I think that it would be easier for me because people would understand my needs and other people's needs. It wouldn't be a big deal. It would just be a natural part of life.

01:41:19:17 - 01:41:30:08
Erin Croyle
What kind of things have you had to teach people just so you could access school or extracurriculars? How much educating do you do in your circles?

01:41:30:10 - 01:41:42:16
Lilith
I have to educate a lot of my teachers on exactly how to accommodate me, and I probably shouldn't have to do this. But why they should accommodate me.

01:41:42:18 - 01:42:16:10
Matthew
And Erin, I have I have so many thoughts on the last five or ten minute conversation we've been having about should we be teaching accessibility, Should we should it be part of our education system, all that stuff? The short answer is yes, I have never understood why in any conversation, disability is not in the same mold as people of color.

01:42:16:12 - 01:42:54:13
Matthew
People on the LGBTQ spectrum. Why it is not more forefront in our education. And yes, I think everyone, every teacher to be should be learning about idea, should be learning about the ADA. You should be having this knowledge base because to not understand disability as a teacher is frankly I think, unacceptable. Right? Because at any point you could be teaching somebody with a disability and you don't know it.

01:42:54:15 - 01:43:14:20
Matthew
What I have loved is that it would have been a primary thing that came out of the 88. Yes, But also what we're talking about right here is the crux of my work. I am trying to do that education. I am trying to make architects more aware of accessibility, so much so that I'm on to architect projects right now.

01:43:14:22 - 01:43:37:11
Matthew
I'm trying to have conversations with builders to say, hey, build more universally design things that, yes, it could be used as an ADR apartment, but it could also be used as a traditional apartment. Build it in the structure of what you already have. Yeah, I think there's a lot of work and a lot of conversation that could be had about Lilith and I.

01:43:37:11 - 01:43:58:16
Matthew
To be part of those conversations. Bring us in. Like, I would love to know more of Louis perspective as somebody who's blind and visually impaired, I can only imagine now, like I know what navigating the world is like for me. And I have all my senses. I can imagine being blind and visually impaired. Now granted, you would figure it out just like anything else.

01:43:58:16 - 01:44:09:01
Matthew
But we all have different ways of going things. But I think the more people knew about those things, the better off we would be.

01:44:09:03 - 01:44:37:11
Erin Croyle
You know, we're talking about education and a lot of what folks do talk about right now is DTI, diversity, equity and inclusion. But in my experience, unless an organization is disability focused, DTI is for everyone but disabled people. We're still outliers. The White House issued an executive order in 2021, changing it to diversity equity, inclusion and accessibility. But that really hasn't gone mainstream.

01:44:37:11 - 01:44:50:13
Erin Croyle
It's only federal guidelines and I never hear anyone talking about it. So I'm curious for both of you what your experience has been with DTI practices.

01:44:50:15 - 01:45:18:11
Matthew
DTI is another one of my hot topics and things that I work on regularly. I do a ton of programing about DTI and bringing people with disabilities into the workplace. And one of the things I always say about the is we need to make sure disability is part of that conversation. Oftentimes I am in the back of the space and disability is not brought up and I'm like, How much more diverse of a population do you want?

01:45:18:17 - 01:45:40:23
Matthew
Our population crosses all other populations. You can be a person of color. You can be a person of color who is also gay. You can be a person of color who is also gay, who is also atheist, right? I'm just making stuff up. It all came across. DEI is so important and disability needs to be a regular part of that conversation.

01:45:41:03 - 01:46:00:21
Matthew
I do that on a lot of panels. I do that with a lot of groups I work with. You know, how are we developing the strategies and when we're developing the strategies, if we have a DEA statement, does that include disability in the language? If we're coming up with a guide plan, like what are we doing for disability programing to make sure that's part of it?

01:46:00:23 - 01:46:05:09
Matthew
I have a lot of thoughts on the idea, but I'm curious to see what Luis has to say.

01:46:05:11 - 01:46:30:15
Lilith
I feel like it's hard to talk about inclusion without talking about disability, and yet everyone acts like disability is a bad word. I feel like the fact that the White House added accessibility to that is good, but people still aren't taking it seriously yet. Disability should have been a part of it from the beginning because disability is not like this really rare thing.

01:46:30:17 - 01:46:42:16
Lilith
It is very common and it's important that people with disabilities are treated the same way as everyone else or in the correct way that they need.

01:46:42:18 - 01:47:08:05
Erin Croyle
One of my favorite things to talk about when we talk about the ADA is the pandemic. And let me say, I don't really like talking about the pandemic. It was traumatic. It still is. It's still hurting people. But I guess one of the few things positive that came out of it is that we were able to see accommodations for people with disabilities that they've been asking for for years, happened virtually overnight.

01:47:08:07 - 01:47:39:21
Erin Croyle
Virtual meetings, telehealth, virtual IEP meetings, the ability to participate in local government remotely. It was just amazing. And at the time the realist in me was like, Oh, this is fleeting. But there was hope that maybe it wouldn't be. But we're seeing now telehealth with the end of the public health emergency is going to slowly be phased out and we're going back to this ill informed idea of normal.

01:47:39:23 - 01:47:53:07
Erin Croyle
And so I'm curious for you to what changes would you like to see be made permanent and what other changes in general would you like to see that you think that we can do after seeing what we were able to do so quickly?

01:47:53:09 - 01:48:13:24
Lilith
I felt like telehealth was a really good step because prior to the pandemic, any time that US three needed to go to the doctor, we had to drive sometimes an hour to the office, then sit in the waiting room, and then basically be sat on by our parents and stop us from looking them off the chair in the sick section.

01:48:14:01 - 01:48:33:21
Lilith
After telehealth, we could just get in front of our computer and be a few minutes later we would be talking to our doctor and then we would not have to worry about who was going to climb on top of the table. So I really think telehealth should be made permanent because while some appointments do require you to be face to face for testing, a lot of appointments don't.

01:48:33:21 - 01:49:05:18
Lilith
So it's very good that you can do a doctor's appointment in the comfort your own home without getting every germ from the hospital and bringing it with you. I also feel like masking was a good thing because while it's really difficult to wear a mask for 8 hours straight at school, the amount of sickness, COVID and just any other illness in general that decreased our family, you didn't really get sick at all in 2020 when prior to masking one person a week was bringing home some really nasty germs.

01:49:05:23 - 01:49:10:18
Lilith
So I think more people should embrace masking and telehealth should be made permanent.

01:49:10:20 - 01:49:12:12
Erin Croyle
Matthew, what about you?

01:49:12:14 - 01:49:37:00
Matthew
I will say that the time during the pandemic was the most productive I think I've ever been, because I would attend 3 to 4 meetings on a regular basis and I wouldn't have to travel. I could get so much more done because I was not having to go from point A to point B to point C to attend meetings or to do something in person.

01:49:37:02 - 01:50:06:16
Matthew
We can't go backwards. We can't go back to what we were before the pandemic because it has made life so much more easy for people with disabilities, so much so that in the coming weeks I'm attending the National AIDS Symposium virtually to re-up my credits for being a coordinator. I could have gone in-person, yes, but it is actually so much more productive, so much more accessible to be able to do it from my home office, all my computer.

01:50:06:18 - 01:50:39:22
Matthew
I can do the session and then go to my kitchen and grab a glass of water or eat some lunch or work on else while I'm waiting in between sessions. I think that every event, everything that we're doing in business, in school, there should always be a virtual component. I know that people dislike getting on Zoom meetings, but there are times when I can't get to a physical space, be it because I don't have a ride it because I'm not feeling well and it's just easier for me to jump on the zoom.

01:50:39:24 - 01:51:01:06
Matthew
That has to remain and I will be very disappointed if we go back to the norm. And frankly, I don't think we are. I think in some spaces we are, but I think people have seen the value in people working from home. There happier right there, there being better productive work done, more quality work done. Yeah, I hope it's not.

01:51:01:08 - 01:51:08:11
Matthew
You must come in from 9 to 5 and you must do X, Y, z because that's not a productive way of thinking about things.

01:51:08:13 - 01:51:28:06
Erin Croyle
You know, it's funny when you discuss productivity about working from home. I find working from home, if no one's home, there are less distractions than an office. No one's dropping by to chat. No one's interrupting. No one saying, Let's go to lunch. You can get a lot more done in a short amount of time because there's no chatter.

01:51:28:08 - 01:51:51:06
Erin Croyle
No, I feel like I need to add as a parent and caregiver when we're talking about some of the adaptive tions with the pandemic that have changed for the positive, for me to have a child who has a lot of needs at school. I have IEP meetings every month with his team. He sees, I think, eight different specialists.

01:51:51:06 - 01:52:14:19
Erin Croyle
Some of them are 6 hours away. So to be able to have telehealth and virtual IEP meetings was a complete game changer. I got hours back from my day because no one wants to stay in chat on a Zoom call. They're like Sia and they hang up. And so even if a school is 10 minutes away, you cut out that that extra.

01:52:14:19 - 01:52:39:10
Erin Croyle
And then you think about families who don't have transportation, who it's hard to make it to IEP meetings. This gives them a chance to actually participate. This opens up participation for people who have not been able to, because of their socioeconomic status, their employment status, their transportation status. It is a game changer and we need to keep looking at how we can evolve those practices, I think.

01:52:39:12 - 01:52:40:14
Matthew
No, I agree.

01:52:40:16 - 01:52:52:20
Erin Croyle
I have to ask you, Matthew, we're talking about the ADA and you just mentioned being an 88 coordinator. So can you tell us more about that? And it sounds like you got the inside scoop there. So why haven't you made changes?

01:52:52:22 - 01:53:12:21
Matthew
Well, I wish I had that. I wish I had that power and authority because I would. There is a certification you can get that says you are an 88 coordinator. So I took a bunch of courses and learned as much as I could about the ADA. Am I an expert? No. But I have my notes everywhere from from the courses that I took.

01:53:12:21 - 01:53:38:09
Matthew
So I have resources available to go back and look. And I really did that for my work. When I'm doing assessments or any of my other work, I'm thinking about things above and beyond the ACA compliance, right? What can we do to make this space more fully inclusive and accessible? So, you know, I have that mindset going in, but now I also have the knowledge of what the ADA requires so I can look at it from both perspectives and I can give the best product to my clients.

01:53:38:09 - 01:53:55:21
Matthew
That is possible because I have that common sense approach. And then I also have what the ADA says. It was really a knowledge learning thing for me. I've had it for about two or three years now. I need to kind of go back and again, that's why I'm taking the courses next week, kind of re up my credits.

01:53:55:21 - 01:54:01:15
Matthew
Yeah, it just gives me a wider breadth of knowledge that I can provide to my clients.

01:54:01:17 - 01:54:08:09
Erin Croyle
So give us something then. Lois and I are here. What's something about the ADA? Do you think, that maybe we don't know.

01:54:08:11 - 01:54:36:00
Matthew
Everything turned out not to be. I know if I have, like, a specific thing. Let me. Let me. Let me give you an example of what I would like to see. Mm hmm. So two things. One, airplanes aren't necessarily covered by the ADA, so the airline industry has their own legislation for that which they're working on that I know I've seen stuff lately on LinkedIn and stuff where they're trying to figure out ways to get wheelchairs on planes so people don't have to leave their chairs.

01:54:36:05 - 01:55:01:06
Matthew
But one of the things I would love to see within the ADA, rather than strict doors, have to be 32 inches or, you know, light switches have to be X, Y inches, make it ranges to say that if a light switch is between here and here, you're compliant because like, let's say I wanted a light switch at a lower register because I'm a seated person and I like light switches at a lower spot.

01:55:01:06 - 01:55:22:04
Matthew
So I don't have to strain to turn them on and off. Or let's say I wanted wider doorways in my house to allow for me to freely navigate as a wheelchair user. So if we developed ranges rather than mandating like it has to be 32 inches, I think that that would help with universal design, that would help with more inclusive accessibility.

01:55:22:09 - 01:55:30:00
Matthew
That's something I brought up to a lot of different folks. There's not been any kind of movement on it, but that's definitely something I would be open to seeing for sure.

01:55:30:02 - 01:55:35:05
Erin Croyle
Is there something in the ADA that's interesting for non wheelchair users?

01:55:35:07 - 01:55:59:20
Lilith
The fact that Braille is required to be on all bathrooms is great, but either there is no regulation about how the quality of the Braille should be or people just don't listen to it. Because like I said, the upside down sign, the fact Braille is pointing to the fact there is typos all in it. I do not know if that is covered by the ADA, but if it isn't, it definitely should be.

01:55:59:20 - 01:56:13:18
Lilith
And if it is, people should pay better attention to it. And again, that shouldn't be strictly the Braille is to look exactly like this and me exactly with texture. But they should at least make it so that Braille is legible.

01:56:13:24 - 01:56:16:24
Erin Croyle
So the good quality control component there.

01:56:17:01 - 01:56:24:10
Lilith
So that if you put your finger on the door, it does not slice your finger right through when you try and read if you're going to the right restroom.

01:56:24:12 - 01:56:25:18
Matthew
Right.

01:56:25:20 - 01:56:53:19
Erin Croyle
Lilith, I like to describe you when I tell people about you because I really admire you. I describe you as a firecracker and it's, ah, my my grandma used to say, and I find it to be a great term. I say this because earlier you mentioned reluctance to bring it up, and I'm curious what that reluctance is given what a strong advocate you are.

01:56:53:21 - 01:57:14:21
Lilith
Mostly, I'm just pretty sure no one's ever brought it to their attention and it's left the reluctance to bring it up. Then me wondering if they're actually going to do anything about it, if they're going to go, yeah, okay. And then turn around and say how annoying I am without ever fixing the Braille. It's more of I want to make sure that if I say something, it will mean something to someone, not just me.

01:57:14:23 - 01:57:38:11
Lilith
Spelling hot air from my mouth to no avail. And I would like to advocate for important things like I am doing right now rather than talking to the wall. I'm not saying you shouldn't advocate. I'm saying that I would. Most of the time I would, but I don't like that It never goes anywhere.

01:57:38:13 - 01:57:56:14
Erin Croyle
Yeah, it's exhausting, isn't it? Yes. You know, the ADA was written before the Internet even existed and before smartphones were here. So if you had a chance to modernize the ADA, what would you do? What would you add? What would you change?

01:57:56:16 - 01:58:28:24
Matthew
Make sure all websites are mandated that they become and be made accessible. There's a lot of websites that are still not accessible. I would think about AI and how that could potentially benefit people with disabilities. I would think about the use all smart devices like I just recently in my bathroom, put in smart light bulbs and I can now say, Hey, Google turn on my bathroom lights and it'll do it.

01:58:29:01 - 01:58:51:18
Matthew
It's important that we get with the times and what the modern world is. And I don't know if the ADA does that. So those are things I would like to see. And unfortunately to Erin, I need to get ready to run. I have to get to the gym and try to get my summer beach body going.

01:58:51:20 - 01:58:53:22
Erin Croyle
Matthew, can I ask you one last question?

01:58:53:24 - 01:58:54:21
Matthew
Sure.

01:58:54:23 - 01:59:02:17
Erin Croyle
We've talked a lot about what you would change. I want to know how we can change.

01:59:02:19 - 01:59:23:10
Matthew
By working together. Let's say Wilson. I worked on a project together, right? She's coming at it from being a person who's visually impaired. I'm coming at it from being Mobility Challenge. Why can't the whole community, why can't the whole 36 million Americans in this country work together to challenge lawmakers to say, I'm tired of you threatening to cut Social Security?

01:59:23:10 - 01:59:48:01
Matthew
I'm tired of you not passing legislation that actually would benefit people with disabilities. Right. There was a huge chunk of the Build back better act that the president put forward that was going to help people with in-home care and other elements of things that impact people with disabilities. But that got taken out. Why did that get taken out?

01:59:48:06 - 02:00:11:13
Matthew
And we need legislation that is working with the new generation of the ADA in the new world that we live in. And because the ADA is so old, can we really see that and can that really be the case? So yeah, I think it's a matter of all of us working together to make the world as best as it can be.

02:00:11:15 - 02:00:14:08
Erin Croyle
I love it. Go get that beach body.

02:00:14:10 - 02:00:21:14
Matthew
I will. I will work on that. But it was very nice to see you guys. And thank you for having me on the podcast. And if I can do anything else, let me know.

02:00:21:16 - 02:00:31:06
Erin Croyle
Oh, we're going to talk dating soon. I got to. I got to think that one over for. So what ideas do you have to modernize the ADA?

02:00:31:08 - 02:00:54:14
Lilith
I agree with what Matthew said. I think that more technology should be incorporated into it because accessibility on computers is very different. Like, I am not endorsing any specific company here, but I turned on my Mac for the first time and said, Set up your accessibility. I turned on my Windows computer. It was the tiniest font ever. The mouse was invisible.

02:00:54:16 - 02:01:25:16
Lilith
I had to install like 16 drivers to get my accessibility onto it. So again, I am not dissing Windows. They are great, but I think they really should incorporate a regulation for how computers should be accessible without people having to turn their pockets out just to be able to work from their computer. That said, also they I, I think that that should also be improved to optimize accessibility for anyone who would need it, like close captions are often very inaccurate.

02:01:25:17 - 02:01:39:22
Lilith
Most days I cannot get Siri to turn on voice over even if I wanted her to. She's like, What? What? What? So technology should be a bigger part of the ADA as it becomes a bigger part of our lives.

02:01:40:02 - 02:02:00:17
Erin Croyle
And I imagine because technology's hard if you're not really savvy anyway. And so if you add that component in with disability and then you also think about how useful it would be to just be able to go to the Mac store, but then how much work it is to plan trips to get out to wherever because of your disability.

02:02:00:17 - 02:02:06:23
Erin Croyle
I mean, it must just add so many extra unnecessary layers to your life.

02:02:07:00 - 02:02:07:22
Lilith
It definitely.

02:02:07:22 - 02:02:29:13
Erin Croyle
Does. What do you think could help peel the onion, if you will, of those layers, making technology accessible? What else do you think our society could do to just take some of those steps away that you have to take to make sure things are accessible for you?

02:02:29:15 - 02:02:59:01
Lilith
It's different for me since my disability is different from Matthew's. I do not require a wheelchair, but it is still very difficult for us to plan an outing because we cannot see. No one can control the sun, but we have to make sure it's very dark outside. It's just a lot of planning for us. And if there are more universal design, it may be easier, like better sidewalks, better regulations for people on the road, stuff like that.

02:02:59:01 - 02:03:06:22
Lilith
That will make it much easier for us to travel more freely without it being like four days of planning for a one hour outing.

02:03:06:24 - 02:03:15:18
Erin Croyle
We talked a lot about vision impairment, but I mean, your albinism must also affect your daily living greatly.

02:03:15:21 - 02:03:21:17
Lilith
About a bottle of sunscreen. Every time we step foot out the front door for playtime for that.

02:03:21:17 - 02:03:31:20
Erin Croyle
Is there anything you think as a community we could do better or do you just have to adapt to the places that are indoors?

02:03:31:22 - 02:03:44:20
Lilith
We adapt to that, yes, but a possibility will be a shade. Your area is for people who don't like bright light or who cannot cope with bright light like me and my siblings.

02:03:44:22 - 02:04:09:16
Erin Croyle
It's interesting you say that because something I wanted to touch on before we go is when we talk about accessibility. Sometimes it does mean taking away like crowds can be very overwhelming and light and sound can be very overwhelm. And a lot of the things that they create that are meant to be accessible are taken up by people with kids who don't need it.

02:04:09:16 - 02:04:20:02
Erin Croyle
And the offerings are so few and far between. I think people forget to consider all those outliers that impact people so greatly.

02:04:20:04 - 02:04:53:24
Lilith
Yes, that was what I was saying about accessibility, benefiting everyone without people actually just using stuff they don't need to and blocking people who need it because like I said, people will just stand in wheelchair ramps. Even when they see a wheelchair coming. They will just stand and stand and stand until I get run over. So it's very hard to balance out using accessibility, how it benefits everyone and having people hog resources and make it hard for people who need the resources to get them.

02:04:54:01 - 02:05:21:15
Erin Croyle
Louis I'm curious of your perspective as a teenager. I mean, you must have had to grow up far sooner than necessary because of your disability and the lack of accessibility around you. Can you tell me a little bit about that? I know it's your life and that's just what it is, but you must see the difference between what you have to do every day and what your non-disabled peers have to do.

02:05:21:17 - 02:05:46:02
Lilith
Again, with my school. Most of them don't have to argue with the teachers in quite the same way I do. Like yes, math teacher. I do need double time on this quiz. Unless you want me to fail or. Yes, Mr. Biology Teacher, can you please blow up my assignment for me and these are examples I have. And I'm not saying I have had these exact experiences, but it's just like that.

02:05:46:04 - 02:06:07:00
Lilith
Mostly I notice the doctor's office. I have to be very aware of everything that's wrong with me. Well, not wrong of me or everything. I have all my diagnoses, everything in my medical records, because they don't get it. And while life hasn't quite an accessibility issue, it is definitely something I've noticed that is different from my peers.

02:06:07:02 - 02:06:26:07
Erin Croyle
And you nailed that on the head. It's it's interesting. That was something I had to learn, too, with my son. I know more about his condition than a lot of his doctors because once again, going back to schooling, disability is not taught to doctors. It's like a just a just a drop and then they move on.

02:06:26:09 - 02:06:41:17
Lilith
I've had them multiple ophthalmologists who don't understand albinism and will chase my eyes around. And so I'm like, Stop it, you are an ophthalmologist. You should know this by now. Wow, You do not chase someone's eyes around when they cannot stop their eyes from moving.

02:06:41:23 - 02:06:43:24
Erin Croyle
Is that painful for you?

02:06:44:01 - 02:06:48:18
Lilith
My eyes moving. It's more painful when I try and make them stop.

02:06:48:20 - 02:06:52:12
Erin Croyle
Do you feel like you had to grow up sooner because of all of this?

02:06:52:14 - 02:06:57:23
Lilith
I feel like I had to grow up a little sooner in certain ways, but not overall.

02:06:58:00 - 02:07:00:19
Erin Croyle
And did you think your parents buffered you?

02:07:00:21 - 02:07:19:14
Lilith
Yes, I think they did a lot with the planning stuff. It was harder for me to do some of the kid activities without it becoming a really long conversation about how I will cope with it. But mostly that was from my parents. And so yes, they helped me a lot. I think somewhat they have to grow up a lot faster.

02:07:19:14 - 02:07:25:11
Lilith
They had to be thrown right into the challenges of parenting immediately.

02:07:25:13 - 02:07:45:07
Erin Croyle
I can very much relate to that as a parent. It's it's it's upsetting because you care so deeply about your child. And to see a world that doesn't accept them, it stabs you through the heart. Well, what are your wishes, hopes and dreams for the future?

02:07:45:09 - 02:07:47:11
Lilith
My future in general?

02:07:47:13 - 02:07:50:15
Erin Croyle
That's a good question. I'd like to hear both, actually.

02:07:50:19 - 02:08:15:08
Lilith
Well, I would like to be a doctor, so I will need to go to medical school, make sure my professors understand my accessibility. Managed campus for the future. I want accessibility and disability to be more accepted by the general community instead of it being some thing where if someone says the word disabled or disability, it's a big bad word.

02:08:15:10 - 02:08:30:22
Lilith
I just want it to be more of a I'm not sure what the word is, just more of a common thing so that if you don't go out, you're not just an inspiration or a waste of something, that you're just another person with some additional leads.

02:08:30:24 - 02:08:41:03
Erin Croyle
Yeah, I like to think of it as, you know, disability is a natural part of the human condition. It's just who we are. It'd be boring. We weren't different.

02:08:41:05 - 02:08:42:22
Lilith
Exactly.

02:08:42:24 - 02:08:50:23
Erin Croyle
Lilith, it has been great talking to you. I always love talking to you. And I'm going to think about something else so I can talk to you again soon.

02:08:51:00 - 02:08:53:02
Lilith
Yes, that would be wonderful.

02:08:53:04 - 02:09:21:24
Erin Croyle
Thank you. And thank you listeners for joining us. We're just getting started with this podcast and can't wait. Bring you more please rate review and share and tell us what you want to hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving, Disability. I'm Erin Croyle. We'll talk soon.