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All right, Leta, you wanna introduce the podcast?
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Okay.
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That's my mom.
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I am n that's human being.
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I am sleepy.
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Uh, it has been a long week at the dance studio already.
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Um, Daniel, thank you so much for joining us today.
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I hate doing list to guess, but I am so bad at introducing our guests that when I introduce them, it gets labeled as AI content.
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So I, and it does not matter how I introduce them.
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It gets labeled as you must be, ai.
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I'm like, thanks for thinking my autism dictation is ai.
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I appreciate that Daniel, do you mind introducing yourself Leta will ever shut up long enough to have you talk?
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Oh, that's hilarious.
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So my name is Daniel Hodges.
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I am the president and co-founder of Pieces of Me Foundation, and we'll get to this later, but we spell it P-E-A-C-E-S of me for a reason.
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Um, we work on transforming society through.
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Community education connections to relevant refor resources and innovative professional training that break the stigma surrounding disability of all kinds.
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Um, I have a lot of grief from University of Baltimore, a Master's in Healthcare administration, and I am somebody who.
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Lives with chronic pain and I'm also blind.
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So that's how I came into this work.
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And for those of you who care, I'm joining you from East Texas today.
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So yeah, I'm glad to be here with y'all today.
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Um, so we are thrilled to have you, uh, we already chatted beforehand in a pre-interview and went, Hey, we're going to need to have Daniel on multiple times on the podcast.
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So this is part one of probably what's going to become a multi-part series.
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Um, can you speak a little bit about.
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Your, uh, disabilities and how they have affected you in life.
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Real quick, just so that the listeners kind of have an idea of why this is important to have pieces.
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Absolutely.
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So I'll start with the one that's the most straightforward, which is the vision loss.
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I was born with a condition called Retinoid Astigmats that's presented in a very.
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Unconventional manner.
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So I've got a little bit of vision in one eye, nothing in the other.
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It's basically been that way all my life and most of what I've encountered as far as struggles go related to vision loss have been societal or structural in nature.
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It's the misconceptions of what I could achieve.
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It's the materials, it's.
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The bias about potential and just trying to not only prove what I can do, but overcome the misconceptions, regard what regarding what other people think I can do.
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The chronic pain one, I'm glad we're getting into this too, because chronic pain can mean a lot of different things to a lot of different people.
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What it means in my world is I was born with a connective tissue disorder called ALO Syndrome, which is.
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Tied to a lot of breaks, a lot of strains, a lot of sprains, and a lot of dislocated joints among some other, you know, non-GI issues.
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A variety of things.
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And so what that means in my life is, you know, I could wake up tomorrow and not be able to use my hand or my leg or whatever.
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That, that happens from time to time.
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And you know, I've had periods of time in the past where I've lost.
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A lot of the use of my hand, or I've, you know, struggled to be able to put, put weight through a leg or a foot, you know, a lot of surgery.
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So it's something that is unpredictable and always present in some form or fashion.
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So it's, it, it really.
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Leads me to work in a certain way, and it also led me to understand that you can't rely on what you get from the doctor's office to, to tell you what you need to know.
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You know, there's a lot of power that comes from connecting with peers who are experiencing the same thing and can give you the inside knowledge on, on how to navigate this world.
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I've learned over life that, uh, the doctors have not necessarily.
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Had the training that a lot of the parents we deal with at the studio think, I'm like with autism, your Dr. May have had an hour of training on autism during their entire medical training.
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And parents are like, really?
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And I'm like, yeah.
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So why don't we listen to the community and what we're saying we need versus whatever weird thing a doctor says.
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Yeah.
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you know.
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There's power in lived experience.
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There's power in community knowledge and I think that, you know, that's not to say that there isn't a place for medical or other
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interventions there is, but helping compartmentalize these different fields allows there to be a lot, a lot stronger basis of knowledge that you can operate from and where you're not trying to overextend people's expertise.
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Well, and I know it sounds really weird when I talk to some of the other disability groups, 'cause the people they're not listening to in the community are our neuro researchers.
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And I'm like, I'm not trying to be mean, but they have PhDs in medical research.
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They, they might know a little bit about what they're talking about.
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Yeah.
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You know, it's, it's funny because, um, we, we often look at.
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Centering, you know, our lived experience and we should, but that doesn't mean that we have to tune out everything else.
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It's, it's about creating the best basis of knowledge that we can by bringing in all of the useful perspectives that we can bring in hopes of achieving a deeper level of enlightenment as it were.
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And that's, I think, a very true statement.
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I just laugh 'cause most of the current researchers in, uh, the medical research failed for autism are all autistic and grew up autistic.
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And it's like, so this is actually the community doing the research.
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And parents are like, well, I trust my doctor more.
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And I'm like, trust me, it'll take 15 years before it gets from the researchers to them.
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Yeah, and understanding that.
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The medical model is to cure whatever can be cured, sometimes even straining what is scientifically reasonable in the process.
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So I've been analogous to that.
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You know, my, my eye doctors growing up didn't know anything about braille, didn't know anything about white canes, didn't have any useful referrals to give, but when they were looking at trying to.
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Helped me live a meaningful life.
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Not only did they tie my potential to achieve to some magical surgery that never came, eventually one of them did try a very risky surgery to restore vision in my right eye.
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And the end result of that was, um, my eye actually rejected the implant, which I'll tell you does not feel good.
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And.
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You know, there's, to this day, 27 years later, there is a tremendous amount of scar tissue in that eye by virtue of that surgery.
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And I don't, I don't blame her for doing what she thought was best.
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It's all about understanding.
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There's a time and a place for medicine, and there's a time and a place for making.
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Of our current circumstances and understanding where those fields overlap and where they don't.
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And I know, oh, um, I like to pick on one of my friends 'cause she's not in my podcast so I can pick on her while she's not around.
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Um she got a lot of pushback from our professors in college because she had a non Labrador, she had a German Shepherd as her seeing eye dog.
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And the professors like, you can't have this.
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And the thing that annoyed me about her seeing eye dog was not, not what annoyed the professors.
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'cause she had trained her seeing eye dog that when he was off duty and we were in the same room, he was supposed to sit right behind me where I would get up from my chair to trip me.
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Wow.
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But the professors were like, even something as small as that.
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Professors were like, well then he's not a seeing eye dog.
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And all of us were like, or hear us out.
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He might need time off as the doggy.
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Yeah.
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And you know, it's so interesting because that's, that's one example where people, I think you could, you could make a case that.
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The, the things people understand that they don't know is one bucket of information that needs, you know, addressed.
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But the arguably more dangerous bucket is the things that the general populations thinks they know, but they're actually incorrect about.
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And so the seeing eye, the seeing eye dog is an example of that.
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But really.
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People are going around with this, these misconceptions regarding what it means to be neurodivergent or have a physical disability or have a chronic illness, and you almost wish they didn't even have that because these misconceptions actually make it harder to teach people what is actually correct.
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Leta had some dance teachers who, she has silent seizures, which are fun to figure out if she's just not listening to me or if she's having a seizure.
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And her teachers would come out, describe what she went through and went, she didn't listen during it.
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And I'm like, that was a silent seizure.
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And they were convinced that they knew what seizures were.
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'cause they'd seen grand mals on portrayed on medical dramas.
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And I'm like.
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Not even sure.
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You know what a
grandma is though?
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Exactly.
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Exactly.
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You can I would like to mention the child that, um, kept almost seeing the pearl gates of heaven knew the choreo better than the children who did almost keep seeing the pearl gates of heaven.
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At least remembered the choreography even though I kept almost seeing the pearl gates of heaven.
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she had one really bad year that I don't think she went through a single class without having a silent seizure, and she remembered the choreo, but the other neurotypical kids without silent seizures kept forgetting I.
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Yeah But, um, I think you're right on that.
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I think so many people, especially with autism or um, like Leva also has a deformed right hip and she will have dance Teachers go, oh, well I can work on your muscles.
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And she's like, I don't think you understand.
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Muscles and bone are two different parts of your ske, your body.
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Okay.
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Um go ahead.
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I forget about it.
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Teacher who said that she had the same issue as me because she sprained her muscles near her.
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Oh, I get it.
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Um, I get it.
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And you know, I, I lived with that too.
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And, you know, with, with aor Danlos, that's kind of one of the hallmarks of it is it takes years to, you know, years to diagnose and yeah, there's, there's so much.
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Misinformation out there.
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And yeah, I had, um, in both of my hips and femurs a twist that starts mid femur all the way up through my pelvis and.
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It's amazing how many people will be like, you know, oh, we'll just lose weight, or just get more exercise, or whatever, and I'm like, okay.
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Those are not necessarily bad things.
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But I was born with Twisted Hips and Twisted Femurs.
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There's only so much you can do with that.
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Yeah, and, and then they come out trying to explain to me how their muscles are equal to, she had an injury when she was 11 months old.
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Uh, she popped her hip out a joint.
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The doctor's prevailing best wisdom was to see if it would go back in on its own.
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It did not.
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ouch.
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So her right hip is slightly outta joint and will their next prevailing wisdom at five was, well, either she lives with this or we can give her hip replacements every time she grows, but she's only allowed
two of them in her life, and it's like, well, she's living with it then.
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Yep.
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Um, and the number of dance teachers who are like, well, no, I understand.
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I mean, we just have to work her muscles so that that bone will heal.
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And I'm like, that, that's not how that works.
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No, I mean, and, and depending on, you know, depending on what they do, there's that risk of actually making the situation worse because you want to make sure that the.
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You wanna make sure that the ligaments don't stretch to a point where it actually makes the hip more unstable instead of making it, instead of making it more stable.
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And that's where you run into these problems of, and I've seen this too, where you have physical therapists or other people even who will say, oh, well let's just, you know, length them this or stretch that.
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You gotta be really careful.
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Otherwise you end up doing a lot more damage.
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She luckily had a really good physical therapist who was used to working with teaching autistic kids how to move, and he's like, oh, goodie, I get to teach her.
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Um, how to use her hip.
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And he's like, so we're just not, if she cried, he was like backing off going, I hurt her again.
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I am.
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So I got Starbucks.
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he did bring my 6-year-old, uh, Starbucks'cause he's like, I feel so bad.
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What else am I supposed to do?
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But bribe her 'cause you're child go through rehab.
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Oh, yep.
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Um, but I wanted to talk, obviously the lived life experience is something no one else, uh, can experience outside of the communities.
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Um, like you said, a lot of people, the general public gets all their information primarily from Google, TikTok, and medical dramas nowadays.
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Yeah.
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Um.
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But you've started an organization that is, um, working to help everyone.
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Can you talk a little bit about, uh, the organization?
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Absolutely.
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So we operate almost on two fronts, and one of 'em is kind of like what we were talking about, helping people find more information that is closer to that lived experience.
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So.
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You know who is out there doing good things.
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In a field that you're looking for.
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Um, for, for example, you know, if you are in Colorado and you wanna know where to have a kid with autism be able to dance, then, you know, pieces of me becomes a place where you can go and find out about an awesome, you know, dance studio in Colorado Springs.
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So that's.
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One of the areas where that peer-to-peer networking, both it, it makes resources more available to the people who need it.
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And it also elevates good people who are doing good things without having to fight with Google or all these other things that just don't prioritize the right search results.
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Um, so that's one thing.
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The other is going in and whether it's.
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With individual professionals or whether it's with, um, small businesses, nonprofits, houses of worship, community organizations, whatever the case may be, and saying, okay, there's a lot of junk out there and so we are here to help you recenter your base of knowledge.
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We're gonna provide the space for you to ask, you know, the questions you need to ask to, you know, meet you where you are.
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Don't worry about, you know, if something comes out in delicate or sideways, there's grace for that here.
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Let's just help you level up your awareness and make it relevant to you replicable and sustainable.
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So not just a one sort of, not just a one time, oh, well I learned this thing today.
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Go on about my merry life.
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But.
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I learned this thing and now I can help change how I do business within my sphere of influence.
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I can become more accessible and inclusive and build upon this progress because we really want the, the work that we do to be lasting and to be self perpetuating and to.
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Counter a lot of the stuff that you're seeing through media, a lot of the stuff that's just old hat knowledge that really isn't, um, especially accurate.
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And we feel like by focusing on upstream, uh, programs like that, that we can actually create a lot more opportunity because that's really the goal is helping every organization or help.
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Helping every business, every medical facility, we can understand the building blocks of how to be authentically inclusive so that we can really start living in a world that is far more integrated.
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How many times do you have businesses or organizations when.
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They get into the program, have like the dumbest ideas ever of what inclusivity means, All the time, and, and I don't blame them.
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You know, there's, there's, there's popular narrative out there right now that says that you have
to choose between accessibility and profit, or you have to choose between inclusivity and high standards.
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You know, Le gave an example just a little bit ago about how, you know, despite having the, the silent seizures, she was still doing stuff in her class that nobody else, you know, was doing.
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And that's, that's the point.
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It's not about let us in and.
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Pat us on the head and feel sorry for us.
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That doesn't help anybody.
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It's about setting people up in a position to succeed and fail on the basis of their own merits.
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Having removed bias and artificial barriers to the best of our ability.
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Uh, sometimes I do wanna go, oh, I feel so bad for you child, because you have to deal with those adults and I just wish you didn't have to deal with those adults especially if I'm, uh, sometimes it's just like, seriously, that's what you think inclusivity is.
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Has you?
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Um, I know I don't read braille, but I do have a lot of friends who read braille and I do a SL, um.
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The grammar isn't the same as spoken English.
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It is completely different.
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And my friends who do braille, they're like, this is completely different.
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And then we'll be somewhere and they're like, oh, a braille reader did not put this together because this sounds like mumbo jumble.
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Yep.
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Um, how many times do you have to go in and explain things like, I'll see parents at studio try to sign, and sometimes it's just like, you were so close to the wanted stop, stop, stop, stop.
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Your child doesn't know.
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Need to know how I. No one know.
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there, there's a couple of signs that are really, really close to each other, and if you mess it up, it goes from that's that was not cherry.
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So, so close, so close, Daniel.
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mess it up, it goes from something I would tell a child to not suitable for work language, or they will try to sign it with like noun, verb, adjective and all in the right deal and they'll be sitting there, the parents signing to me and I'm like.
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I need you to maybe just use your words because that's not like, and you're signing every single word.
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No one signs every word.
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Your hands would get tired if you signed everything Or that one little stupid book thing.
00:21:02.763 --> 00:21:04.423
I'm sorry, what do you mean?
00:21:05.054 --> 00:21:07.489
What do you mean whatcha doing?
00:21:07.489 --> 00:21:08.179
Gibberish?
00:21:09.318 --> 00:21:19.878
at the baby A SL, which I think nobody who actually speaks a SL likes the whole But cute when a baby does Not when a grown adult does it.
00:21:20.179 --> 00:21:21.469
It's cute when the baby does it.
00:21:22.038 --> 00:21:23.509
Like it's cute how a baby.
00:21:23.898 --> 00:21:24.469
Oh, the moms.
00:21:24.469 --> 00:21:24.979
It's not cute.
00:21:25.098 --> 00:21:26.038
If anybody else photobombs.
00:21:27.903 --> 00:21:35.328
Um, but do you find that happens a lot in businesses where they are so close to doing something right.
00:21:35.334 --> 00:21:37.939
And you're like, just tweak it ever so slightly.
00:21:39.243 --> 00:21:40.203
Absolutely.
00:21:40.503 --> 00:21:49.354
And you know, the funny thing is a lot of times what they're doing is actually harder than what they could be doing.
00:21:49.894 --> 00:21:54.094
So that's the beauty of this a lot of times is saying, look.
00:21:54.588 --> 00:22:15.108
You already, the effort's there, and I know you're scared because you're thinking, well, I'm already overextended, and how, you know, what's it going to be like to do it the rest of the way until you're, I wanna say, wait a minute, actually you can get twice the effort or you can get twice the results with 80% of the effort.
00:22:15.409 --> 00:22:16.368
And here's how.
00:22:16.669 --> 00:22:20.749
And you know, I tell people you don't.
00:22:21.544 --> 00:22:25.743
Probably you don't file your own taxes, you don't handle your own cybersecurity.
00:22:25.983 --> 00:22:28.624
You don't, you know, do your own payroll.
00:22:28.773 --> 00:22:46.473
A lot of times, you know, insurance, whatever the case may be, there are certain buckets of subject matter expertise that people, you know, quickly offload because it's very complex and requires a certain, you know, set of skills.
00:22:46.999 --> 00:22:51.528
Accessibility, at least when you're getting started, belongs there.
00:22:51.858 --> 00:22:55.759
Now we can teach you how to bake it into your culture.
00:22:55.999 --> 00:23:07.489
We can teach you how to make it self perpetuating, but it's very difficult to find to figure out on, out on your own because again, it's a matter.
00:23:07.489 --> 00:23:08.868
It's a matter of lived experience.
00:23:08.868 --> 00:23:11.743
It's a matter of trial and error, and.
00:23:12.798 --> 00:23:15.348
Some very, you know, specific tools.
00:23:15.858 --> 00:23:23.148
So, yeah, I, I feel like that's one of the biggest problems is people think, oh, well I should be able to figure this out.
00:23:23.808 --> 00:23:29.568
And, you know, that's, we all have things that we need help figuring out.
00:23:29.568 --> 00:23:30.739
There's no shame in that.
00:23:30.769 --> 00:23:39.634
There's a lot more, I, a lot more benefit that we can, we can render when we, you know, have people working within their particular zone of expertise.
00:23:40.433 --> 00:23:51.983
I mean, I do have the lived experience of being
autistic, but when we started the dance studio, I was hitting up every single one of my friends who is an expert in the field going, hi.
00:23:52.219 --> 00:23:55.459
You are one of the leading speech and language pathologist.
00:23:55.459 --> 00:23:56.868
You have so many papers.
00:23:56.868 --> 00:23:59.118
What do I need to know to put this together?
00:23:59.358 --> 00:24:03.739
I was calling up friends, going, you're doing ot, you're writing all the papers, everyone's reading.
00:24:03.739 --> 00:24:05.388
What do we need to bring into this?
00:24:05.449 --> 00:24:07.699
And people were like, but you know this.
00:24:07.699 --> 00:24:10.159
And I'm like, I know it.
00:24:10.578 --> 00:24:13.759
But I have friends who are smarter than me, so I'm gonna go call them real quick.
00:24:14.558 --> 00:24:14.769
Yeah.
00:24:14.769 --> 00:24:14.828
Yeah.
00:24:14.828 --> 00:24:22.808
You know, on on, on our board of directors, we have, we have, um, my co-founder, my who is.
00:24:23.634 --> 00:24:31.763
Has a behavioral health background and has a completely different set of life experiences than I do, despite being my first cousin.
00:24:32.153 --> 00:24:40.614
We have somebody on there who ha is very good when it comes to administrative things, not my skillset.
00:24:40.644 --> 00:24:41.513
I'm a visionary.
00:24:41.933 --> 00:24:50.544
We have my old business organization professor from law school who handles, um, a lot of our bylaws and a lot of our policies and stuff.
00:24:50.903 --> 00:24:55.013
Because even though I went to law school, I don't like doing those things.
00:24:55.523 --> 00:25:09.503
We have, you know, people who are very skilled in the intricacies of web accessibility and web design because again, those skills are necessary and their skills I don't have.
00:25:09.834 --> 00:25:18.943
So yeah, I think it's, if you really wanna get inclusion right, you start by building a team of people who.
00:25:20.189 --> 00:25:26.618
Are smart and driven and know things that you don't, How hard is that to explain to.
00:25:26.818 --> 00:25:41.189
You businesses sometimes going, it's not that you are dumb, it's just that you don't know this and you are doing things that you really don't have to do, and it would be so much easier if you just did this.
00:25:41.989 --> 00:25:42.943
you know, I think it's.
00:25:43.743 --> 00:25:48.753
Almost a sense of relief when you give them permission to not know.
00:25:49.443 --> 00:26:04.443
Um, the bigger problem is taking them from that space to where they feel like now is the time to level up because there's so much going on in the world.
00:26:04.683 --> 00:26:07.378
There are so many demands on their time and.
00:26:08.193 --> 00:26:14.644
On their limited resources that you have to be able to bluntly say, look, this is important.
00:26:14.703 --> 00:26:16.384
It's not gonna solve itself.
00:26:17.253 --> 00:26:24.943
I can set the business case for why you have to do this, not only in general, but really why you need to do this right now.
00:26:25.743 --> 00:26:39.693
How many times do you wind up going into a business and um, is it such a small thing that part of you is like, this'll take five seconds of your time to fix?
00:26:39.693 --> 00:26:42.364
I know like where we are right now for the studio.
00:26:42.364 --> 00:26:45.693
The first thing I did when I got there, and it's years of.
00:26:46.253 --> 00:26:54.624
Working in the spaces I work in, I looked at the leasing agent and went, you know your parking lot's not a DA accessible, right?
00:26:55.423 --> 00:27:07.034
Yeah, and, and most of the time it is, it's, it's small, simple fixes that accumulate in order to make real profound differences.
00:27:07.834 --> 00:27:15.554
I know with the parking lot I also mentioned, 'cause there's like a half inch gap between the parking lot and the sidewalk, and I'm like, you're also.
00:27:16.453 --> 00:27:19.183
We live in Colorado, it rains and then stops raining.
00:27:19.213 --> 00:27:20.923
It snows and it stops snowing.
00:27:21.163 --> 00:27:24.134
That moisture's all running under your foundation, just FYI.
00:27:25.598 --> 00:27:25.888
Yeah.
00:27:25.903 --> 00:27:32.743
So fixing this little gap can probably give you a lot more time on your very nice building, standing up straight.
00:27:33.544 --> 00:27:55.804
You know, that's an interesting point too because, you know, business owners are the ones who take the flack for having, you know, a ramp that maybe was installed wrong or, you know, not having the right parking spaces and you know, one could make the case that they should be.
00:27:56.374 --> 00:28:15.094
Watching over the work of the contractors and you know, ultimately as business owners we're, we are, you know, we are responsible, but it is a, i i I, I sympathize with their place because when you are in those moments, there are a lot of things going on.
00:28:15.483 --> 00:28:18.348
You should be able to trust that your contractors.
00:28:19.189 --> 00:28:24.919
Are aware of the relevant regulations and that they're following best practices.
00:28:25.489 --> 00:28:40.338
And then, you know, you turn around and you talk to construction people and I, I've talked to some really, really bright construction people who say, look, I'm not trying to keep people with disabilities out of this business.
00:28:41.209 --> 00:28:45.648
I know that there is an a DA, I know that there's a bunch of really complex standards.
00:28:45.919 --> 00:28:48.048
I have no idea where to find them.
00:28:48.394 --> 00:28:50.614
Nor do I have the time to go looking for them.
00:28:50.884 --> 00:29:13.683
So that kind of brings us back to why pieces of me exists among other resources, because we do want to put together packets of information so that you know, people have the, the information they need in a manner that is easily acquired, understandable, applicable, all of those things.
00:29:13.864 --> 00:29:14.433
'cause right now.
00:29:15.233 -->
00:29:26.814
You know, I've talked with enough people to believe it when they say we don't know where to go, and the places you would think you would go for information are useless.
00:29:27.203 --> 00:29:29.663
So there's a lot falling.
00:29:29.784 --> 00:29:32.094
There's a lot falling through that particular knowledge gap.
00:29:32.894 --> 00:29:35.413
This one specific thing on the parking lot.
00:29:35.413 --> 00:29:44.939
I was just laughing 'cause it was definitely the contractor must have been under a time constraint Yeah.
00:29:45.284 --> 00:29:51.598
and yes, if that asphalt had gone all the way up to the concrete for the sidewalk.
00:29:52.499 --> 00:29:55.588
It would've been a DA compliant across the entire thing.
00:29:55.588 --> 00:30:00.388
They didn't need a ramp because the asphalt is supposed to meet the sidewalk at level.
00:30:00.388 --> 00:30:09.568
And I'm like, but, but you're gonna just make those little cracks go underneath the foundation of the building, just ignoring the a DA portion of this.
00:30:09.568 --> 00:30:11.219
This is going to become a structural issue.
00:30:12.388 --> 00:30:16.394
Yeah, and I think that's also, um, a good point because.
00:30:17.193 --> 00:30:30.034
People think of the A DA as being this burdensome thing that they have to fight against in order to keep themselves in business when in reality done right.
00:30:30.034 --> 00:30:42.993
You know, universal design is good design, it is sound design, and so there's a very tight nexus between being accessible and creating a solid user experience.
00:30:42.993 --> 00:30:44.584
And then also just creating.
00:30:45.334 --> 00:30:48.378
Sustainable structures, whether they be physical or digital.
00:30:49.179 --> 00:31:06.064
How often do you run up against like that when talking to businesses where you go in and you're like, not only would this be good for your employees and customers who fall under a D eight, but this would probably save you money in the future if you fix it now.
00:31:06.864 --> 00:31:07.314
All the time.
00:31:07.614 --> 00:31:08.304
All the time.
00:31:08.318 --> 00:31:26.199
And I. I'm gonna get a little controversial here, and I think it's both because businesses haven't done the homework, and it's also because the broader disability community has not done enough to emphasize the business case for accessibility.
00:31:26.999 --> 00:31:29.398
I think there's probably truth in that.
00:31:29.459 --> 00:31:30.009
Um, I know.
00:31:30.298 --> 00:31:35.818
Even when we were looking at spaces that I would walk in and go, this isn't big enough for a wheelchair.
00:31:35.818 --> 00:31:36.959
And they're like, oh.
00:31:37.378 --> 00:31:46.618
And I'm like, also, just in case you're wondering, that is now exactly how wide a ambulances or a paramedics, uh.
00:31:47.413 --> 00:31:49.663
Whatchamacallit when they're bringing you in.
00:31:49.753 --> 00:31:52.723
Uh, so do want the paramedics getting into your business?
00:31:52.723 -->
00:31:59.294
And we had people going, wait, so they can't roll in a stretcher if I don't widen this door?
00:31:59.294 --> 00:32:01.003
I'm like, that's what I'm saying.
00:32:01.804 --> 00:32:03.903
Exactly, exactly.
00:32:03.993 --> 00:32:16.384
And to me that's the most frustrating thing is we treat, you know, we treat, and people have been conditioned to treat these issues as though they live in a silo and they don't.
00:32:16.503 --> 00:32:19.288
And I personally, I don't think.
00:32:20.314 --> 00:32:35.013
I'm not of the opinion that leveraging the business case and talking about the practical aspects, I don't think that devalues my existence as a person with disability or my, my need to participate.
00:32:35.644 --> 00:32:45.683
I, you know, maybe it, maybe it deemphasizes the social cause, but to me, I'm looking at this saying.
00:32:46.538 --> 00:32:49.148
How do we practically make this happen?
00:32:49.749 --> 00:33:02.348
And if we're doing it in integrity and legally and ethically, I'm less concerned with how the messaging goes than I am making sure it actually happens.
00:33:03.148 --> 00:33:05.344
I, I told a few of my friends, it sounds bad.
00:33:05.374 --> 00:33:09.544
I'm really more concerned with whether or not we can get stretchers in sometimes.
00:33:10.584 --> 00:33:13.463
Because that's the largest thing we want in.
00:33:13.463 --> 00:33:19.163
And I'm like, and business owners, when you go, if you have a heart attack, do you want the paramedics to be able to come in and get you?
00:33:19.314 --> 00:33:21.683
They tend to go, yes, that would be a good thing.
00:33:22.433 --> 00:33:27.614
Wonder Dors so skinny because our current building lead, it predates the a DA.
00:33:28.963 --> 00:33:30.824
No, I met the rest of the people's doors.
00:33:31.273 --> 00:33:40.124
You know, the thing said they'll predate the something, something letters, something something, letters something, and And I am less concerned.
00:33:40.364 --> 00:33:40.723
Yeah.
00:33:40.723 --> 00:33:54.193
A lot of people are still building and they're not following a DA and it's like, but you know, um, we also have a big warehouse door on the back of our place and I'm pretty sure the fire department can get in anything in through the warehouse.
00:33:54.993 --> 00:34:09.798
Well, you bring up an interesting point too, because you know, in, in most jurisdictions the building code, the official building code is treated separately from the a DA.
00:34:10.849 --> 00:34:14.088
And it's like, why are we making the ADA a optional?
00:34:14.088 --> 00:34:25.369
Even in that sense, why not make the a DA part of the building code so that there's clarification, there's accountability, there is consistency.
00:34:25.579 --> 00:34:27.708
That is a change that can and should be made.
00:34:28.509 --> 00:34:29.679
It definitely should.
00:34:29.679 --> 00:34:36.969
And I know like our fire codes say you have to follow the a DA because one's more stretcher.
00:34:37.389
--> 00:34:41.409
Uh, but the building codes don't say you have to follow fire codes.
00:34:41.409 --> 00:34:44.094
So, uh, Yep.
00:34:44.893 --> 00:34:50.353
and it's like, and I've talked to business owners in our town who are just shocked to find out.
00:34:50.998 --> 00:35:03.099
Things like fire alarms, you have to have them where they, the exits have exit this way with the verbal and all that, and business owners are like, well, I didn't know that was part of the a DA.
00:35:03.099 --> 00:35:06.298
And I'm like, that's actually part of the fire code.
00:35:06.659 --> 00:35:07.498
You're gonna be fine.
00:35:07.498 --> 00:35:11.173
When the a DA finds you, uh, the fire code fine is way, way higher.
00:35:12.498 --> 00:35:12.719
Yep.
00:35:13.518 --> 00:35:15.108
And, uh, they're like, wait.
00:35:15.108 --> 00:35:17.568
I'm like, yeah, that fire code fine for that one.
00:35:17.748 --> 00:35:22.608
I looked it up the other day, and here in El Paso County it's only like 200,000.
00:35:22.608 --> 00:35:23.239
Don't worry.
00:35:23.239 --> 00:35:25.728
The ADA a is not even gonna be a problem at that point.
00:35:26.028 --> 00:35:34.119
tell me, I am not the only one who, who is confused about how humans even made it true evolution, even though we seem stupid.
00:35:35.289 --> 00:35:36.878
How did we ever make a true evolution?
00:35:36.878 --> 00:35:38.168
How did we even evolve?
00:35:38.213 --> 00:35:39.398
Why are we even alive?
00:35:39.398 --> 00:35:40.954
Should we be extinct?
00:35:41.753 --> 00:35:46.793
Um, but how many times do you walk into businesses and things like that and you're like.
00:35:47.289 --> 00:35:54.369
Yes, I get that the a DA is over here and it is hidden and it shouldn't be hidden and it should be in your building codes.
00:35:54.369 --> 00:36:00.759
'cause you don't wanna go up against the federal government when they come after you for a DA and then go.
00:36:01.028 --> 00:36:05.438
But you know, the a DA doesn't go nearly as far as the fire department over here.
00:36:05.469 --> 00:36:08.108
So have you thought about not getting fined by them?
00:36:08.909 --> 00:36:09.329
Yeah.
00:36:09.329 --> 00:36:13.949
And again, that's, you know, those are the consistent misconceptions that are out there.
00:36:13.949 --> 00:36:18.528
And you know, again, these are, these are fixable issues.
00:36:19.329 --> 00:36:24.059
Um, how many times, like, and this is gonna say, sound crazy.
00:36:24.358 --> 00:36:32.039
Do you actually wind up saving the business money because their inclusivity stuff is so insanely.
00:36:32.548 --> 00:36:38.670
Difficult and like hours upon hours where it could have been a five minute solution.
00:36:39.469 --> 00:36:44.449
You know, we haven't got as much work on that yet as I would like.
00:36:44.750 --> 00:36:48.079
Um, so the sampling size is really small, but the.
00:36:49.369 --> 00:36:51.079
The overall concept, yes.
00:36:51.079 --> 00:37:05.719
There's, you know, I, I've sat down with people at, you know, business lunches, group lunches and whatever, and they talk about how they tried to accommodate a specific employee based on their level of knowledge.
00:37:05.719 --> 00:37:06.769
And they did.
00:37:07.730 --> 00:37:11.449
They made, they made a, a good faith effort and then some.
00:37:11.900 --> 00:37:18.650
But had they known, you know, what experts in the field know about?
00:37:19.400 --> 00:37:32.449
You know, the particular challenge they were trying to solve, it's something that somebody who's been there could have solved in five minutes and could have been a really cheap, quick, easy fix.
00:37:32.869 --> 00:37:43.519
So yeah, it's something that not only with somebody like me, but across, you know, across the advocacy world, it's, it's generally understood that, yeah, it's something that if you.
00:37:44.480 --> 00:37:48.260
Try to take it on on your own, it's going to cost you more.
00:37:48.260 --> 00:37:59.840
It's going to be a far bigger headache, and it's going to be less efficacious than it could have been, um, just by virtue of outsourcing.
00:37:59.840 --> 00:38:00.380
A little bit of help.
00:38:01.179 --> 00:38:02.280
We have 40 minutes.
00:38:03.690 --> 00:38:06.599
She is definitely the little producer over there.
00:38:06.659 --> 00:38:14.099
Um, I know like with autism, fluorescent lighting is just the bane of everyone's existence.
00:38:14.579 --> 00:38:17.070
It buzzes, it gives you migraines.
00:38:17.099 --> 00:38:18.780
It's like the worst thing in the world.
00:38:19.289 --> 00:38:24.090
And the building we're renting from was like, well, we'll come in, we'll rip it out.
00:38:24.090 --> 00:38:25.079
We'll do what you need.
00:38:25.079 --> 00:38:26.789
We'll just charge you extra.
00:38:26.820 --> 00:38:27.264
And one of our.
00:38:27.599 --> 00:38:42.869
Uh, staffer's, parents walked in, looked up and went, I'm getting on Amazon right now 'cause there are covers we can get that are like pretty, uh, colors and they'll look like clouds for the kids and they're magnets and it'll take two seconds to fix this problem.
00:38:42.945 --> 00:38:44.715
You forgot, burn your eyeballs.
00:38:44.715 --> 00:38:44.744
I.
00:38:45.510 --> 00:38:47.250
Yes, fluorescent lights do burn your eyeballs.
00:38:47.639 --> 00:38:55.679
Uh, but like we were joking 'cause it took a neurodivergent person to walk in and go, oh yeah, I know where that, uh, deal is and it cost.
00:38:56.144 --> 00:39:00.989
20 bucks instead of ripping out all the lights in a building, Yep.
00:39:02.489 --> 00:39:03.119
So true.
00:39:03.920 --> 00:39:13.054
how often do you find, it's like even the small things, like they're going, I'm gonna go spend a hundred thousand dollars, and you're like, or Amazon has to fix for five.
00:39:13.855 --> 00:39:14.215
Yeah.
00:39:14.545 --> 00:39:29.695
You know, and, and that's, there's good research on that too, um, both from the individual accommodation standpoint and then also, you know, further up
the chain of, you know, access, general accessibility and universal design.
00:39:30.070 --> 00:39:39.369
Usually it's, you know, usually these fixes are negligible in their cost and in their difficulty.
00:39:39.699 --> 00:39:55.420
And I think that's where a lot of the resistance comes from too, because people who aren't familiar with this topic have this idea that it's gonna be crazy expensive, that it's going to be really difficult to implement.
00:39:56.079 --> 00:39:58.929
And you know, once people see.
00:39:59.440 --> 00:40:05.409
Oh, this is something that is, you know, barely cost any money and takes five minutes.
00:40:06.010 --> 00:40:22.449
You see that light bulb and the, the, the beautiful thing about it is once people see an example of something that was far less intrusive and expensive than they thought it would be, now you can start reshaping their view of accessibility in general.
00:40:23.250 --> 00:40:31.155
How many times are businesses grateful after you leave going, oh, thank God this is so much easier than I thought it was going to be.
00:40:32.489 --> 00:40:46.295
And, you know, that's a common thing even, um, even when I don't lend a client just going in and I, I do, I do business mixers all the time, um, through various professional networks and.
00:40:47.204 --> 00:40:59.264
That's general sentiment of, you know, just going in there, having a quick five, 10 minute conversation and saying, Hey, you know, you can do this, you should do this, and by the way, it's gonna be a lot less of a hassle.
00:40:59.264 --> 00:41:00.375
You think it will be?
00:41:00.855 --> 00:41:01.065
Yeah.
00:41:01.065 --> 00:41:06.945
There's that, there's that relief in saying, okay, I wanted to do the right thing all along.
00:41:07.514 --> 00:41:09.135
Now I know that I can.
00:41:09.585 --> 00:41:14.565
And there, there's a general, just, it's like somebody pulled the weight off their shoulders.
00:41:15.364 --> 00:41:17.574
Um, my brain is trying.
00:41:17.574 --> 00:41:22.525
I have way too many questions going at once, and I'm trying to figure out one I wanna ask.
00:41:24.025 --> 00:41:24.385
How.
00:41:25.389 --> 00:41:49.659
Do you ever hear from the, uh, people in the businesses that needed the accommodations, that things were so much better when you came in and went like, this is the, a accommodate how the accommodation actually kind of needs to be done, versus when someone from outside the community is trying to rack their brain and go, oh my God, I've never seen the a DA before.
00:41:49.659 --> 00:41:51.550
How am I supposed to accommodate anyone?
00:41:52.349 --> 00:42:00.505
And again, my, my personal sample size is small, but I know within my own work that that's a general sentiment.
00:42:00.505 --> 00:42:19.275
But, um, from talking with my colleagues, from doing the research, um, yeah, it's, it's the general sentiment from people who talk about this is it was easier, cheaper, and far less burdensome than they ever thought it would be.
00:42:20.074 --> 00:42:23.329
You know, I work IEPs and have for 20 years.
00:42:23.360 --> 00:42:28.429
She does not have one because we homeschool her so that I did not have to deal with IEPs.
00:42:29.300 --> 00:42:30.380
And, go ahead.
00:42:30.440 --> 00:42:33.434
Say the Also because my school almost got me hit like.
00:42:33.739 --> 00:42:35.570
Or four times because they lost me.
00:42:36.530 --> 00:42:37.519
she I'm still breathing.
00:42:38.869 --> 00:42:41.210
Is somebody else wondering how I'm still breathing?
00:42:42.605 --> 00:42:43.505
Sometimes I do.
00:42:43.775 --> 00:42:52.909
Uh, she also kept, uh, escaping from the school playground and part of me was like, chicken wire mesh along the fencing would fix this problem for you guys.
00:42:53.210 --> 00:42:56.510
the bar waly sides in the shape of a tiny child.
00:42:57.635 --> 00:43:01.985
um, and they're like, oh, well we just can't follow the a DA.
00:43:01.985 --> 00:43:04.985
And I'm like, she is one of the older kids.
00:43:05.045 --> 00:43:05.675
Uh, you have.
00:43:06.110 --> 00:43:10.460
Preschoolers and toddlers, just chicken mesh, uh, would make all parents happy.
00:43:10.909 --> 00:43:26.690
But I know with IEP since, you know, I'm autistic and there's things that I just inherently know after 20 years of working on this, I'll walk in and parents and teachers are wanting one thing and I'm like, I know reinventing the wheel sounds like fun.
00:43:26.690 --> 00:43:31.670
But we have had a wheel for a few, you know, millennia now, and it works perfectly fine.
00:43:32.239 --> 00:43:33.500
Um, like.
00:43:34.250 --> 00:43:36.619
Have we thought about maybe using the will?
00:43:36.619 --> 00:43:41.239
And they're all like, oh my gosh, no one ever told us the will existed.
00:43:41.239 --> 00:43:42.085
And I'm like, how?
00:43:42.090 --> 00:43:44.059
How did you not know this will existed?
00:43:45.380 --> 00:43:45.710
Yep.
00:43:46.510 --> 00:43:48.885
I've You know, I even, go So, go ahead.
00:43:49.030 --> 00:43:49.269
Daniel.
00:43:50.414 --> 00:43:50.835
No go ahead.
00:43:51.635 --> 00:43:57.840
Even something as simple as, you know, working with dyslexic students and trying to get them to not.
00:43:58.710 --> 00:44:03.030
Do their, uh, writing where it slants like mine does.
00:44:03.030 --> 00:44:07.469
If I don't have a ruler there, I'm like, here, put a ruler on the left side of the paper.
00:44:07.739 --> 00:44:08.670
And they're writing.
00:44:08.730 --> 00:44:12.389
They have a stick showing this is where to begin every time.
00:44:12.449 --> 00:44:13.679
And their brain will notice it.
00:44:13.679 --> 00:44:17.519
And teachers are like, I never thought about giving them a visual cue.
00:44:17.519 --> 00:44:19.260
I'm like, I am walking away now.
00:44:19.320 --> 00:44:20.550
Uh, but yeah, it works.
00:44:21.349 --> 00:44:29.405
You know, I think this is a good time to mention that I, I got my bachelor's in, um, education studies.
00:44:29.405
--> 00:44:34.114
I was actually a few weeks away from getting my.
00:44:35.385 --> 00:44:42.590
Degree, degree in secondary and social sciences and getting licensure to go with it when my, my placement fell through.
00:44:43.039 --> 00:44:56.920
And so I can, I can say that at least through the school that I attended, you know, we, teachers aren't really taught about that level of problem solving.
00:44:56.949 --> 00:44:59.800
And I see even more than that.
00:45:00.655 --> 00:45:08.244
You know, we, we talked earlier in the podcast about, um, you know, doctors not having good education on autism.
00:45:08.605 --> 00:45:14.034
And the similar, a similar phenomenon happens with education.
00:45:14.034 --> 00:45:25.824
You know, these teachers are given maybe a semester on special ed in general if that, and they're not taught, um.
00:45:26.625 --> 00:45:35.534
Anything substantive on how to teach students who, you know, may, may encounter the classroom differently.
00:45:35.534 --> 00:45:46.664
And I'm not even just talking disabilities of their other versions, I'm just talking basic, being human and not falling into a certain particular, you know, learning style.
00:45:46.934 --> 00:45:51.074
And I think that's, again, goes back to trying to.
00:45:51.840 --> 00:46:07.190
Teach professionals to be curious that, that it's, that it's good to think outside the box and to invest the time and the mental energy to, you know, ask, okay, may you know what other solutions are out there.
00:46:07.519 --> 00:46:10.429
Um, you know, what other approaches can we take?
00:46:10.429 --> 00:46:19.280
Because, you know, that was something that I encountered when I was growing up too, is, you know, nobody in.
00:46:19.864 --> 00:46:24.244
The mainstream classrooms that I was in had any idea how to teach a blind kid.
00:46:24.244 --> 00:46:27.155
And some of them had ideas, some of them didn't.
00:46:27.155 --> 00:46:29.405
Some ideas, you know, worked, some didn't.
00:46:29.945 --> 00:46:38.465
But there wasn't that underlying awareness, nor did anybody know that a couple hours away was the Ohio School for the Blind.
00:46:38.465 --> 00:46:43.954
Somebody could have called and said, Hey, might wanna come give this kid some orientation, mobility and braille training.
00:46:44.375 --> 00:46:46.835
You know, I didn't get any of that until I was 17.
00:46:47.635 --> 00:46:48.985
We have 50 minutes.
00:46:49.135 --> 00:46:51.925
If you want us to go hour, I suggest wrapping it up now.
00:46:51.925 --> 00:46:54.400
If you want us to go hour, then uh, go ahead.
00:46:55.780 --> 00:46:58.239
Uh, let finish my thought, then we'll wrap a bit up.
00:46:58.300 --> 00:46:58.630
Yeah.
00:46:58.630 --> 00:47:12.880
Like I, I am not blaming teachers, um, but I did not even know the word dyslexia existed until I was 11 and my teacher walked past and he's like, oh, I'm just dyslexic too.
00:47:12.880 --> 00:47:15.550
And I'm like, what is dyslexic?
00:47:15.550 --> 00:47:17.469
And
he's like, here's how I fix it.
00:47:17.469 --> 00:47:20.375
Put your ruler right here and your writing won't like.
00:47:20.909 --> 00:47:25.139
Wind up at the other side of the paper and look like you were writing on a triangle versus a rectangle.
00:47:25.139 --> 00:47:28.920
And I'm like, ah, that is like magic.
00:47:29.719 --> 00:47:31.224
Uh, what?
00:47:31.224 --> 00:47:35.934
But it took a teacher who had been there to fix it for me.
00:47:36.715 --> 00:47:49.025
The What It does, and you know, this seems like a great time to do a teaser for what's going to be part number two, where we talk about why disability led disability run so important.
00:47:50.389 --> 00:47:52.280
And Leta has just frozen up over there.
00:47:52.280 --> 00:47:54.974
Good thing we're almost at the end, kid you shut down on me.
00:47:55.429 --> 00:47:57.530
Oh, her completely shut down on her.
00:47:57.530 --> 00:47:58.340
Great.
00:47:59.000 --> 00:48:00.440
Uh, I'll fix that back on.
00:48:01.880 --> 00:48:16.219
But yeah, so we are going to definitely have to have you on again because there is a severe need for that sort of stuff where it is led by the community, um, and.
00:48:16.655 --> 00:48:18.605
That'll probably be next week.
00:48:18.695 --> 00:48:24.094
I know we're recording it next week, but when we put it out, I think I'm gonna do 'em back to back Fridays.
00:48:24.885 --> 00:48:25.375
Awesome.
00:48:26.795 --> 00:48:31.715
Um, between now and when we have you back on, uh, where can people find you on the web?
00:48:33.019 --> 00:48:33.409
Yes.
00:48:33.440 --> 00:48:39.139
So, um, go to pieces of me and that's P-E-A-C-E-S of me.org.
00:48:39.875 --> 00:48:44.554
You'll be able to find our social there, you'll be able to personally connect with me there.
00:48:44.824 --> 00:48:50.704
Um, for those of you who are on LinkedIn and wanna reach out, I am Daniel Ho jd MHA, on LinkedIn.
00:48:51.094 --> 00:48:52.864
Um, look for me in the cowboy hat.
00:48:52.864 --> 00:49:02.449
That's how you know you found the right one, and I would love to connect, answer any questions, continue on this conversation with anybody who wants to reach out.
00:49:03.250 --> 00:49:03.789
I will fix yours.
00:49:04.570 --> 00:49:04.869
Hi.
00:49:04.869 --> 00:49:06.880
You're like, I'm coming over here to say hi.
00:49:06.909 --> 00:49:08.650
You can jump in the picture.
00:49:09.909 --> 00:49:12.369
Her computer decided to completely die on us.
00:49:13.170 --> 00:49:17.610
So, uh, she's like, now over on my side of the, uh, recording studio.
00:49:17.820 --> 00:49:25.710
Um, thank you so much for coming on and thank you for pre agreeing to do an entirely different deal next week.
00:49:25.800 --> 00:49:32.909
Um, before we go, did you wanna kind of give a preview of what we're talking about next week?
00:49:33.179 --> 00:49:34.425
Better than I did Yeah.
00:49:35.414 --> 00:49:35.804
Yeah.
00:49:35.835 --> 00:49:43.454
So we're gonna dive into why disability led and disability run organizations feel a unique need within.
00:49:44.909 --> 00:49:45.599
The world.
00:49:45.659 --> 00:49:48.960
And that goes back to authentic representation.
00:49:49.139 --> 00:50:08.489
It goes back to saying there are things that we as people with disabilities or people with who are neurodivergent, whatever we figured out about how to live life that need to be reflected in a leadership and need to be passed down to new generations who are trying to learn the same things.
00:50:09.945 --> 00:50:28.570
And I think that's something parents of kids in these communities need to hear because a lot of the parents are coming in from the able-bodied community and they're not aware in a lot of ways that their kid belongs to a totally different community than they belong to Do.
00:50:28.619 --> 00:50:29.309
Exactly.
00:50:30.110 --> 00:50:39.230
And I think sometimes when we're out there as you know, the elders in the community talking about things and these parents are like, oh no, no, my kid doesn't need it.
00:50:39.230 --> 00:50:44.269
And you're like, except for they have to live in this community as an adult.
00:50:44.329 --> 00:50:51.980
Um, and I think the parents themselves can learn a lot from the communities that are led by us.
00:50:52.429 --> 00:50:52.989
I also think we need.
00:50:53.869 --> 00:50:58.760
More of us in the roles of leading IEPs in special ed departments.
00:50:58.789 --> 00:51:14.119
'cause I gotta say all the guys I know and gals who work, uh, sped, I can tell you which departments across this country since I get to work nationwide with IEPs, which ones have someone who was on an IEP as a kid?
00:51:14.119 --> 00:51:18.710
I can like instantly pick them in meetings going and this will be an easy meeting for me.
00:51:18.739 --> 00:51:20.300
Maybe not for the rest of you.
00:51:21.510 --> 00:51:21.730
Yep.
00:51:22.530 --> 00:51:28.244
That's so true we can't wait to talk to you again, and we will see you next week.
00:51:28.244 --> 00:51:29.025
Thanks, Daniel.
00:51:29.909 --> 00:51:30.480
Thank you.
00:51:31.724 --> 00:51:31.875
Mm.