Breaking Barriers: Daniel Hodges on Disability, Inclusion, and Purpose

Welcome And Guest Introduction

SPEAKER_00 0:22

Let's get started.

SPEAKER_02 0:35

Hello everyone. Think we can for joining us to another episode of the Tor School. On today's episode, we have Daniel, Hardy, J D M E A, who is what leader on accountability and authentic, including of people with disabilities. Daniel is a co-founder of teachers of me foundation for the nonprofit that he started while he was in law school. The mixing of peace of me foundation to transform society to community education, innovative professional training, and connecting to relevant resources that break the stigma and disability of all kinds. As an individual who lives with multiple disabilities himself, he understands firsthand how vital this work is. Daniel receives a good doctorate from the University of Baltimore and is Masters in Healthcare administration from Western Governors University. Daniel, thank you so much for coming on the show today. Thank you for having me. Absolutely. You were born and also live with a connective take-up disorder. Can you say a bit about what your daily life looked like or looked like growing up? Yeah.

SPEAKER_01 2:12

You know, I find when people hear that term, it's it's so it's so amorphous that, you know, it's hard to wrap your head around. So I'm glad we're starting here. So I I've always lived with some level of chronic pain. And, you know, in that sense, it can be anywhere in the body. And I

Chronic Pain And Getting Diagnosed

SPEAKER_01 2:33

was always prone to injuries growing up. I broke several bones as a kid and as a young man, and had, you know, several other strains and strains and what we later found out were dislocations. So it was always uh, you know, an issue of what's going on, why is you know, why are these things happening? Is it just that I have a low pain tolerance? You know, what was going on here? And it took until I was in my, you know, in my thirties until I finally had the right answers. And what what were some of those answers that you that you well the first set of answers I got was that it was what they initially called a mixed connective tissue disorder, where they said, Okay, clearly your ligaments are lax, clearly your joints are unstable. Shortly after that, when I was 29, I had the latest of many um orthopedic surgeons who looked at me and said, Well, wait a minute, your your legs are messed up and your hips are messed up because there's a 35-degree twist in both of your femurs. So obviously that's gonna throw off your locomotion, which is an interesting piece of data to to arrive at at that juncture of life. Um we started the process of getting those fixed, and finally, when I was 31, we we got the answer of yes, indeed, this is what they would call Baylor's Damos syndrome, hypermobility style of type. So it was it is a defect in the collagen which holds the body, you know, it's it's the body's glue that holds everything together. It's found in every type of tissue throughout the body. And so everything from the autoimmunity to the orthopedic defects to some of the vision loss, digestive issues, etc. etc., all started to be connected and explained by virtue of having a diagnosis.

SPEAKER_02 4:42

Now, was this from birth that you've had these issues, or was it chronic over over time?

SPEAKER_01 4:50

Yeah, so the ecollagen issue is something that we're born with. It's actually something that just develops even in utero, and you know the the after-effects are things that develop over time. So with Aylers Danlos, they say okay, it's not really something that impacts life expectancy, but it is something that is seen as being highly degenerative. If you think about a shoulder or a hip or an ankle that chronically dislocates or subluxes, which is a partial dislocation, eventually those those tissues in that joint wear down, eventually the friction in the joint builds up arthritis, and so it's something that where the symptoms that are a consequence of the ailer's dialos just continue to develop over time.

SPEAKER_02 5:50

What were some of the expectations or something people placed on you because of your disabilities, and how do you learn to push back against them?

SPEAKER_01 6:01

From a very early age, due to the retinitis pigmentosa, which is a a scarring of both of my retinas that I've had since I was born as well. Due to those things, I was always told growing up that my ability to succeed in life was tied to

Low Expectations And Proving Them Wrong

SPEAKER_01 6:23

a futuristic surgery that, you know, 40 years later still hasn't happened. So they taught me in school and outside of school, it was always, okay, well, we're going to try to magnify the print as large as we can. Who cares if each letter is the size of your palm? And we're going to try to encourage you to use your limited eyesight to get around and you know to try to use your eye for whatever we can, as opposed to preparing me to use non-visual techniques. And it got to a point where I missed out on several years of school entirely because the system just fell through. And toward the end of that process, I had a professional come into our home and flat out told my parents, Oh, sorry, he'll never be able to do anything other than cane shares because of his disabilities. And fortunately, not too long after that, relatively speaking, I had an opportunity to go for to a school for the blind where I started to get a different perspective. And then I started getting connected with more and more people who saw a different pathway for me and encouraged me to advance one run at a time up the ladder and just keep challenging myself at every stage.

SPEAKER_02 7:50

Yeah. And you know, look what you've done. You b you got a jurisdictorate degree, and tell us what that means and what your other degrees are that you that you Yeah, so the jurisdictorate degree is the is the basic requirement to be a lawyer in the US.

SPEAKER_01 8:08

So it is a law degree. Now, due to um health issues and such, I did not sit for the bar, so I'm not a practicing attorney, but I do have a law degree, and I did go back to school a couple years ago to get my master's in healthcare administration as well. And you know, this all this all started from 23 years ago getting a GED and saying I'm not done yet. I'm gonna push myself through undergrad, get my degree in education, and I'm gonna fight through health challenges and inaccessibility and low expectations, and just keep pushing myself to figure out how far I can go, and more importantly, how to add enough tools to my toolbox that I can leverage my skills and talents to be able to help others get past some of the barriers I faced.

SPEAKER_02 9:08

Yeah. Did you ever go back to those people that told you, hey, he's not doing a mountain, he you know, he won't do anything with his life and say, hey, look what I've done. You know, it's funny.

SPEAKER_01 9:23

I I've had the opportunity, um I've had the opportunity to see where some people who were daughters were able to watch my success, and there are others who just kind of faded into the background, and I've never been able to re- you know, re-established cont contact, and that's that's okay. I I look at it as you know, there's part of me that that wants to be like, yeah, you know, look what happened, and the other part of me that says, you know, what I can do is I can I can reach out to people who are in similar positions as the ones who dotted me and say, look, you're able to see my story at these various checkpoints along the way now. Can I help you escape some of the misconceptions, escape some of the bias that you have been taught to absorb as part of your education so that you don't do to to somebody else what was done to me? Right. And I and I find that I find that in doing so, not only am I able to spread some hope, but it also helps me on my forgiveness journey.

SPEAKER_02 10:41

How has living with both visible and invisible aspects of disability shaped the way you navigate the world and advocate for others? That's a great question.

SPEAKER_01 10:54

It has it actually resulted in me stepping away from the organized blind movement because I found that the issues that impact my life on a daily basis were

Visible Versus Invisible Disability

SPEAKER_01 11:14

not being discussed, were not being adequately considered within some of the single, you know, singular disability groups. And it really has made me stretch myself in my advocacy skills because so often people see the white cane, they see me walking, they see me doing whatever, and they assume that blindness is the most pervasive challenge I deal with, and it causes me to say, look, actually, no, blindness in and of itself is not that hard to deal with, apart from the inacc you know, inaccessibility and bias and such. But when I'm waking up one day and can't move a hand or can't move a foot or can't move a leg or whatever, that's you know, that's much harder to deal with on a daily basis, at least in my world. So it's made me have to get better at expressing where I'm at and helping people look past what they think they can see in order to get my needs met.

SPEAKER_02 12:22

Yeah. And people listening, you have a family. You were even telling me before we started uh recording that you have a daughter, Kurt.

SPEAKER_01 12:35

Yeah. Yeah, I've got three teenagers, a daughter who just turned 18, and uh uh my boys are turning 16 and turning 14.

SPEAKER_02 12:44

Now what would you say, you know, a lot of people with especially with disabilities, including myself, you know, we may say, well, nobody nobody's gonna love me because of my disability,

Love And Self-Worth With Disability

SPEAKER_02 12:56

and you know, nobody's gonna, you know, we're never gonna find that that wife that you know that we're looking for. What would you say to people that that say that or think that?

SPEAKER_01 13:06

So let me provide some context because that is a that's a fascinating question. Like it's a is a critically important question. So um my ex-wife and I got divorced nine years ago this June. Um, you know, there was always before we met, there was always that fear of, you know, will somebody love me? Will you know or will somebody love me as I am? You know, because back when back when Marion and I met, we were both teenagers and I was just getting started accepting myself as a blind person. And so when we got divorced back in 2017, I got to start all of this all over again. I had to get myself mentally and spiritually right, and I had to work on some health issues that were happening in the moment. And yeah, it's been something where I have to remind myself, okay, I did have a marriage at one point. It didn't work out for a number of different reasons, but I don't believe that was my one chance. I certainly hope that wasn't my one chance. And trying to navigate this world, uh I am less mobile than I was when I got divorced. I have slightly less eyesight than I did when we got divorced. And um I'm a little bit less physically active because of the surgeries than I was since we got divorced. I've I've really had to stretch myself, and I think to be really transparent here, it's a question that I'm only partially qualified to answer because I'm working through it myself. Yeah. It's a question I grapple with every day. But what I can share is I'm working on doing the things I have control over. I'm working on trying to be the kind of man that the woman I would want to be with would want to, you know, that she would want to be with me. I am not that there's any particular woman, but that that kind of woman. I am working on focusing on bringing value to the world. I'm working on loving myself for who I am, building myself up mentally, spiritually, physically, um trying to trust, trying to have faith in the fact that the right woman for me is going to be far more focused on what I bring to the table than she will be focused on the things that I don't bring to the table. Moreover, that she will be prepared to go those highs and lows with me. Because when you have an invisible disability, especially one that one that is unpredictable in nature, one where I can be appearing to be relatively fine on one day and the next day I might not be able to walk, or one where there are major surgeries in the cards, where there's such a there's such a chasm between how it can play out from one day to the next. Knowing that there is a lot that's going to be asked of that companion, but also knowing that there is somebody who has been prepared in her own way to meet that challenge, and that still in my supposedly broken form, I can be the answer to her prayers. It's a lot and it's a struggle, but it's something that I think with with the right work and the right mindset, we can at least make for momentum. I hope that was helpful.

SPEAKER_02 17:07

Yeah, well, how has your faith or spiritual perspective influenced the way you view and live with your disability?

SPEAKER_01 17:17

I am reminded that nothing is an accident. I was not made the way I was made as some sort of you know, cosmic or genetic anomaly. I was designed to be who I am for a reason. Understanding that

Faith And The Hard Why Questions

SPEAKER_01 17:40

um helps me remember that even when my doubt sets in and I start to feel like an exception to the rule, um, okay, everybody has somebody but you. Everybody can succeed but you. Everybody can grow but you. Like, wait a minute, no, that but you is a lie. Um and again, I don't get it right every day. I might not get everybody would get it right most days. But somewhere in the back of my mind, despite the pain, despite the worry, despite the fear, that truth is what saves you.

SPEAKER_02 18:16

You know, a lot of people who are f believe in God and are people of faith, you know, especially when we have either non-disabil disability or non-disability, you know, we question with the question of we level with the question of why me? Or what is God's purpose in suffering. Have you ever thought about those questions and what have you found, you know, for insight or peace?

SPEAKER_01 18:43

I have, and it kind of goes goes back to a couple of questions ago. You know, I I have a number of female friends. Some of them are married to guys that they will tell you are jerks. And not that I want to be with that friend. It's not that's not where I'm going with this, but you look around and you say, this dude has a loving wife and a family that and a marriage that looks solid, and yet he doesn't seem to want to, you know, recognize or appreciate those things. And here I am working on myself, and I can't even get a date. So sometimes you you you go down that road. Or you look at when I was younger, I had just enough eyesight that I I could easily switch a three-pointer on a basketball court. I could hit a soft tossed baseball with a wooden bat for a home run. I had the real athletic abilities. And there was a question not of why me, but of if I'm meant to have these disabilities, if they are incurable, why would I also be blessed with this athletic talent? And I don't have a great answer for those things. Um I I do know that there are certain ways in which being born with the conditions I have, they have shaped my character. And they have shaped my compassion for other people. Um and they have helped me make a difference in a way that probably would have never occurred occurred to me otherwise. But that's not to say that you don't wake up one day and you can't move your hand and you don't say, Man, this sucks. Or you don't watch people who you know don't even try to take care of themselves and you know, they get away with still being able to be active, and you're like, Man, I exercise as much as my body will allow, maybe more so, and you never know it by looking at me. Um those are hard, hard questions. And I feel like fortunately, we we worship a God who understands those questions that are gonna come up and gives us grace for working through those questions, but none of that makes it easy.

SPEAKER_02 21:30

Can you tell us a little bit more about your foundation that you co-founded and what does it do and how does it help people with disabilities?

SPEAKER_01 21:39

Absolutely. So, my my cousin and I run an organization called Pieces of Me Foundation, and we spell it P E A C E S for actually multiple reasons now. The first was we always knew that we wanted to have an organization who would help people understand that regardless of whether disabilities. They have, they're not broken. They're not missing

Pieces Of Me Foundation Mission

SPEAKER_01 22:03

a piece as in P-I-E-C E. And peace, P-E-A-C-E, comes by accepting and embracing who we are. So that's the original purpose for spelling pieces the way we did. We also came to learn later that as the world has developed a mindset where advocacy looks more like burning something down as opposed to reaching across the aisle to formulate new ideas that we're gonna stand for something different. We're going to hold fast to the belief that access is a human right, but we're also going to intentionally sit down with stakeholders who are not actively involved in the accessibility movement and say, hey, let's work on this together. Let's figure this out together in a win-win mindset and meet people where they are, call them in. So that's the other meaning of the word pieces. And and I gotta tell you, the the idea for pieces of me or maybe the catalyst for it. The thing that made me say, okay, this is the time. I'm gonna I'm gonna reach out to Christy and we're gonna start this in between the first and second year of law school. That happened as a result of me getting my butt kicked by life that summer and praying for inspiration on what to do next, and not getting the answer I thought I was gonna get, but getting the answer I needed.

SPEAKER_02 23:46

How can organizations become more inclusive without sacrificing standards?

SPEAKER_01 23:54

The first thing is to get curious. You know, so often people think they know what it means to have a disability and what the media shows, what what we perceive is often so far off the mark that it leads to this cascading series of misconceptions

Inclusion Without Lowering Standards

SPEAKER_01 24:20

and barriers. So the first thing to do is to ask, okay, what would it take to make this position or this role accessible? And start innovating, start iterating. I tell people that if you understand design thinking or other problem solving techniques that are in that same vein, then you already understand what it means to make an accommodation. It's just a matter of applying that design thinking or that problem solving mindset to an accessibility problem. Similarly, with something like job crafting and inclusion. If you know how to do job crafting where you're designing roles around people instead of shoehorning people into roles, you already know how to be inclusive. All we gotta do is tie you know, tidy up a few things, give you a little bit more subject matter knowledge, and you're on your way. What I what I tell people is if you're feeling like you have to lower standards in order to be inclusive, that's a problem that needs to be addressed before we can do much of anything because no accessibility advocate worth their salt is going to recommend that you lower standards because that's not helping you and it's not helping us. Isn't accessibility expensive? So the the vast majority of accommodations, statistically speaking, cost nothing or around $500 or less. Which, if you're taking it out of your checking account is expensive. If you're taking it out of a business, really it it isn't. There are a few people always ask okay, well, what about the $10,000 elevator? Okay, granted, sometimes there are outliers, but generally speaking, no. And apart from the tax incentives that are out there that can often pay for them, I think the more important point is accessibility, when designed correctly, has been shown to have an extraordinarily high ROI for businesses. So if you view it as an investment, it is one of the best investments you can make.

SPEAKER_02 26:39

What are some things you wish people knew about being blind?

SPEAKER_01 26:44

I'm gonna go back to something I alluded to earlier, which was the difference between problems that are intrinsic to vision loss versus problems that are a byproduct of inaccessibility and misconceptions. Around 30% of my struggle that I deal with can be directly linked to the actual loss of eyesight. It's not nothing,

What People Miss About Blindness

SPEAKER_01 27:12

but it's also not the majority of things. Versus inaccessible websites, or knock of rail, or knock of you know just knock of sightings in general, or having to prove my ability to do something beyond what is normally expected of someone, or just the simple things of walking down the street and having to wonder if I'm gonna get grabbed out of nowhere because somebody thinks they're trying to help, um actually puts me in fight or flight mode. So those are the things that are really hard about being black.

SPEAKER_02 27:48

Going back to the question about what what can how can organization become more inclusive? How can what a simple step anyone can take to be more inclusive?

SPEAKER_01 28:00

I would say if you're a company, it all starts with culture. Establish a culture of innovation where you're not afraid of change. Establish a culture of trust where your colleagues, your team members are willing to openly communicate and know that their thoughts, their feelings, their insights are going to be valued. Establish

Curiosity As A Daily Inclusion Practice

SPEAKER_01 28:27

a culture of growth where you're constantly looking to iterate. If you have those components and similar ones in place, then there are already there are already processes in place for you to deal with a surprise or to deal with somebody self-disclosing. You've already you've got the building blocks in place. For individuals, again, it's you know, learning to be curious, learning to suspend our assumptions in order to get to know the person in front of us. Um by the way, I think that's just a good life practice, especially right now. Just saying, you know what? Maybe this person is different from me, and I'm not sure how to handle that. But also remember that disability is only one of many characteristics they have. So it doesn't define them. You can you can and you should get to know the whole person, and then as you do that, inclusion becomes not only natural and possible, I think it becomes inevitable.

SPEAKER_02 29:41

And I also think as someone who has a disability as well, and I think it's okay that people ask us questions rather than, you know, you know, stare point called names. I think both of us would rather have people ask us questions about our disability can get to know us that way as well.

SPEAKER_01 30:02

Absolutely. And I always tell people, you know, time time and place. You know, when I'm when I'm in the middle of a four-lane street, that's not the time to ask me how I cross the street. You know, that can wait, that can wait till we get to the other, you know, to the other side of the road. But you yeah, I mean, it's mindset and approach, right? I mean, if somebody is skeptical, that's gonna put us on the defensive. But if somebody says, hey, I have no idea what it's like from your perspective, and I want to know because I wanna because I want to grow, I want to become more knowledgeable. 99 times out of a hundred, I'm gonna be like, yeah, let's let's do that. And the one out of a hundred times, it's just a matter of timing, you know. We're all allowed to have bad days, we're all allowed to be rusts, we're all allowed to be, you know, maybe you know, we we we spilled our spot our breakfast all over ourselves that morning. Whatever. So those things happen. In in general terms, yeah. We, you know, if the context is right, let's have those conversations. I I can't I can't correct the misconsumption if it's not articulated to me. But when that misconsumption is brought up, that's when we have the opportunity to replace Sigma with knowledge.

SPEAKER_02 31:20

Yeah. And we give it an end here. We like to ask my guest, what kind of word of increment that you would like to leave with my lichnus?

SPEAKER_01 31:30

You know, I'm gonna go back to the difficult but necessary discussion we had several moments ago um on life and love and such, and say we don't have to have it figured out all the way in order to be able to share the light

Final Encouragement And Closing

SPEAKER_01 31:54

and the hope that we do have. And I think sometimes we get so caught up on whether a growth journey is complete as as though it could ever be, instead of saying, hey, I've grown, I've learned, I've evolved, and that matters. And knowing that the steps we take toward learning, toward growth, as as unsteady and as small and even as inconsistent as they may be, they matter and they're seen and they are recognized.

SPEAKER_02 32:31

Yeah. Well, Daniel, thank you, Comak for coming on the show today. We greatly appreciate having you.

SPEAKER_01 32:37

Thanks and likewise. It's been a pleasure.

SPEAKER_02 32:39

Well, guys and girls, thank you, Comp, for coming on and for listening. And please tune in to this episode and weekly episode by subscribing on all podcast platforms. We'll have more information about Daniels and organization in the channel. Please don't share this episode with other people that you know. And hopefully you all have a great day until next time. We get through any YouTube.

SPEAKER_00 33:13

That's all for today's episode of the Dorsey Live. Thank you so much for that.