Daniel Hodges: Systemic Risks, Disability Discrimination, & Changing Environments
Episode Show Notes:
In this episode, Daniel Hodges, co-founder of Peaces of Me Foundation, shares his powerful journey navigating the healthcare system, disability discrimination, and advocacy for inclusive communities. Daniel has great insights as someone who was born with multiple disabilities, father of three (two of which survived childhood cancer), holds multiple degrees, and cofounded a non-profit to help people with disabilities, Peaces of Me Foundation! Everyone, please go support Daniel and Peaces of Me!
Thanks again to Daniel for joining me for this discussion!
I hope you enjoy this episode!
Resources:
Peaces of Me: https://www.peacesofme.org/
Bilateral retina blastoma: https://www.childrenshospital.org/conditions-treatments/retinoblastoma
Adenoid cystic carcinoma: https://my.clevelandclinic.org/health/diseases/22212-adenoid-cystic-carcinoma
Ehlors danlos: https://www.ehlers-danlos.com/what-is-eds/
Episode show notes & transcripts can be found here: www.digitalactivismpod.com/
Connect with Daniel Hodges!:
Daniel LinkedIn: https://www.linkedin.com/in/daniel-hodges-jd/
Peaces of Me Foundation: https://www.peacesofme.org/
Follow Caden!:
Caden IG: instagram.com/obviously_its_caden/
Caden TikTok: tiktok.com/@wheelchair_king
Caden Threads: threads.com/@obviously_its_caden
Email Caden: cadennelmsofficial@gmail.com
Follow the Pod!:
YouTube: / @digitalactivismproject
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Love y’all<3
Want to be a guest on Digital Activism? Send Caden Nelms a message on PodMatch, here: https://www.podmatch.com/hostdetailpreview/1777852969056733ae9bff9bd
Episode Transcript (Approx.):
Caden Nelms (0:00)
Hello, beautiful people. Today we have on Daniel Hodges. I just wanted to give you his bio before we hop into the conversation with him. And he also introduces himself and ⁓ what he does and advocates and his disabilities, things like that. But I just wanted to give this little blurb about Daniel leading up to it.
Daniel Hodges is a thought leader on accessibility and authentic inclusion of people with disabilities. Daniel is the president and co-founder of Peaces of Me Foundation, which is a nonprofit that he started while he was in law school. The mission of Peaces of Me Foundation is to transform society through community education, innovative professional training, and connections to relevant resources that break the stigma surrounding disabilities of all kinds.
As an individual who lives with multiple disabilities himself, he understands firsthand how vital this work is. Daniel received his jurisdictorate from the University of Baltimore and his Master's in Healthcare Administration from Western Governors University. He was born blind as well with other disabilities like ehlers danlos syndrome. And growing up, the school system assumed that he was incapable of learning enough to become a fully functioning adult.
This ultimately led to a situation where he missed out on grades seventh through eleventh grade. Thus the idea that he would end up with multiple advanced degrees was inconceivable to the most of the adults in his life.
He says, as someone who lives with chronic pain and mental health struggles, I have found the beauty in serving as a means for survival. I know what it means to fight for opportunities and defy expectations on the path to becoming what we are meant to be. Moreover, I know what it means to soothe out our own pain by helping someone in need reclaim the hope that they deserve. I feel blessed for having the chance to help people step into their brilliance.
And facilitate changes within organizations that unleash the best in their people. In my mind, these are two sides of the same coin. So that is a little bit about Daniel. I want to read just a little piece about Peaces of Me, which is again his nonprofit that he's the president and co-founded. Peaces of Me works to eliminate stigma associated with disability, physical difference, and chronic illness.
By providing resources and connections to individuals and families and appropriate training to professionals in these spheres.
So again, that's just a little blurb about Daniel and his mission and purpose that he he strives to make the world and America and everyone, even local communities, more inclusive to people with disabilities. And now I have more resources for myself and my listeners and community. And I just can't thank Daniel enough for having this conversation. I hope you all enjoy and let me know what you think.
Hello, beautiful people. Welcome back to another episode of Digital Activism. Today I'm here with Daniel Hodges and I'm gonna let him introduce himself actually. So first, how are you Daniel?
Daniel Hodges (03:33)
I'm doing okay, how about yourself?
Caden Nelms (03:35)
doing pretty good. Listen to it rain, thunderstorm, hoping the power doesn't go out. Yeah. So I do want to acknowledge and it's a funny reason why. And I say funny because he said it's funny first. ⁓ This is an audio only episode and I'm gonna let Daniel explain why.
Daniel Hodges (03:41)
There you go.
Yeah, so I am blind and I also have a connective tissue disorder called Ehlers-Danlos. And what ended up happening is as I was shaving in preparation for being on camera today, I ended up having one of those moments where my razor and my very touchy skin did not play nice. And so I've been trying for the last hour at this point to get my
um, get myself to stop bleeding. And we were, we were laughing about this before, um, before hitting the record button because I was saying, you know, a lot of people, if they say, oh, he cut himself shaving, you know, aside from the fact that men do it all the time, um, would assume that it must be a visual thing. was like, no, it has nothing to do with vision. It has everything to do with the fact that my skin is very velvety and very fragile. And I have a tendency.
Once I start bleeding, it's very hard to stop. Part of my Ehlers-Danlos. So we thought we would bring that up from the top as just an object lesson of some of the assumptions that we often deal with and the misconceptions that are out there.
Caden Nelms (05:13)
which are the most annoying things. And it's like the simple little things, know? It's not the, it's never what they think, you know? Kind what you were saying. It's not because we do it all the time, shaving or being blind or having low vision. It's something you wouldn't even consider.
Daniel Hodges (05:18)
No.
Caden Nelms (05:40)
And it's always like the invisible disabilities or the ones that are not always presenting that cause all the weird little quirks.
Daniel Hodges (05:49)
That is so true.
Caden Nelms (05:52)
So I'm gonna let you introduce yourself
Daniel Hodges (05:54)
Awesome. So I am the president and co-founder of Peaces of Me Foundation. We spell it P-E-A-C-E-S of me, and we'll probably get to why that is later in the episode. I am somebody who holds a law degree and I also hold a master's in healthcare administration. But the reason I love doing podcasts like this is because if you hear those credentials, you would probably
have certain assumptions regarding how I was brought up, the resources I had at my disposal. Maybe we talk about privilege, that sort of thing. And I want to back that up and say, wait a minute. I actually was taught all of my childhood and teenage years that my ability to succeed was contented upon getting my vision, quote unquote, restored. And if that didn't happen, that's...
I would never be able to go to school, have a job, have a family, et cetera, et cetera. As a matter of fact, when I was living in South Carolina as a teenager, a supposed blindness professional sat in my parents' office and said, well, sorry, but all he'll ever be able to do is cane chairs. And that came on the heels of me actually missing five years of my K-12 education entirely. So I love having conversations like this and I do the work that I do because
So often what we assume is really off the mark and until we address those underlying misconceptions, it's going to be impossible for us to create real solutions that actually move the ball forward. I'm, that's my work in a nutshell. I'm just glad to be here with you today.
Caden Nelms (07:41)
Yeah, thank you for being here. Okay, so you touched on a couple of things.
The school situation, you said you just came back from five years off from school. Is that what you were saying?
Daniel Hodges (07:52)
No, so, ⁓ so when I was in my, ⁓ preteen and early teen years, after sixth grade, ⁓ my parents were going to attempt to homeschool me, but the resources were inaccessible and they found themselves unable to find help. The public school hadn't reached out to the school for the blind, so they didn't have any training and braille or white catering.
Those things are not available to me until much later and there were no accessible homeschool materials. So that among other things led to me actually missing ⁓ seventh, eighth, all but one month and ninth, 10th and 11th grades completely. yeah, so then ⁓ during the summer between my 11th 12th grade years, my sister found
the School for the Blind in Idaho and we were able to get me enrolled there and that's where I was first to do these two. Braille and a white cane and assistive technology, all of that stuff. It's also the first time I had ever crossed paths with anyone else who was blind or low vision.
Caden Nelms (09:02)
So you, I do wanna touch on that because I, seeing people for the first time with a similar disability or saying medical devices or assisted devices is such a, almost like for me at least, is such like a euphoric feeling of like I'm seeing, you it's not just me. So.
You learn to use assistive devices much later than most blind or low vision kids, right?
So was that a struggle, having to learn it later on than early on?
Daniel Hodges (09:41)
I think there is some residual difficulty there because I came to it later. And at the same time, there was a real hunger to learn these things once I was finally ⁓ exposed to them, just because...
just because I had really struggled to find a way to succeed without masking. I had spent so much time trying to be a broken-hearted person that when I finally was exposed to Jaws and Braille and a white cane, and I started to understand the power that was there, I was kind of insatiable. I I dove headfirst into learning. ⁓
how to use a screen reader. I dove headfirst in how to use in Braille. And ⁓ I went from never holding a white cane before to ⁓ being able to go anywhere in the country I wanted to and travel wherever I wanted to. I made that leap within less than two years.
Caden Nelms (11:01)
The feeling of freedom and independence is like, I imagine if you could remember, like anyone could remember their first steps as a little kid, and could comprehend it, that would be like the same feeling, or like first time crawling, or like a teenager when they get to drive for the first time, or whatever it may be, like that sense of freedom, but it lasts almost,
forever because you're always learning new devices and new techniques and what works for you and adapting and disabilities change and things like that. And so that feeling is like almost like a continual boost of confidence. At least it was for me. Do you, if you don't mind me asking, what do you still or what devices do you still use in terms of assistive devices?
Daniel Hodges (11:57)
So for the most part, like if I'm traveling, I use a long white cane and ⁓ I will occasionally use a mobility cane as well if I'm having a really bad situation with my joints. ⁓ I'll also say, even though this is a little more controversial, I actually do a meet and assist at the airport because even though I'm capable of finding my own way, the number of unnecessary steps
I am likely to take while exploring is something I'm just not willing or able to do if I'm having a bad pain day. And there are, you know, there's been more times lately where if somebody says erroneously, oh, you're blind, you need a wheelchair, where I would have fought that on principle earlier in my life. I'm like, you know what, if I've got a
a knee or a swollen foot or a hip that's grinding against itself, I'm just gonna say forget it. I'm not gonna fight with you on the technicalities. I'll take the free ride and I'll save my bravado for a different day.
Caden Nelms (13:12)
It's exhausting trying to justify, defend or fight in terms of, you know, disability, accessibility, all those things, but like, unfortunately, unfortunately, all disabled people have to do it, especially the ones that feel comfortable doing it almost don't get a break. So people that do podcasts or talk in person or fight accessibility on a school campus or just in their town or home or whatever. It's like once they start,
Daniel Hodges (13:18)
Yeah!
Caden Nelms (13:41)
They don't get to stop hardly. And it's kind of sad. They need a break too.
Daniel Hodges (13:51)
That's true and I think for those of us who do it it's it's so important to have Good self-care practices and it's so important to have boundaries and to be able to give your mind your heart and your soul a break because as you said, it's it's exhausting. this is the This is the third podcast I've done this week and
Also, I had a meeting yesterday with a group of gentlemen who were looking at building an inclusive community and their hearts in the right place, but their level of knowledge isn't there. And I applaud them for making the effort to bring somebody like me into the conversation. Don't get me wrong. And I enjoy doing podcasts like this, but at the same time, there's going to be a baseball game I'll be listening to here in a few hours.
just because I need something to actively turn my brain off and to be able to recharge.
Caden Nelms (14:54)
Yep, I will be playing video games after this or watching my cousin graduate on video. That's it is that balance, you know. ⁓ And like I, I was able to look at my calendar and like fill it up for the next couple of weeks. And then I was like, why did I do that to myself? Why did I do it that much? Why didn't I space it out a little more? ⁓ And so going forward, it will not be this busy ⁓
Daniel Hodges (15:12)
Yeah
Caden Nelms (15:23)
It happened so fast, but yeah, that boundary and your mental health priority. Cause like everybody needs, of course, absolutely take care of their mental health and they have their own things that are important that they need to focus on, but disabled and disabled people and people with chronic illnesses and minorities in general, think have an extra level of stuff that they have to take care of in terms of mental health.
that's sometimes hard to find the resource, sometimes hard to find the community, but it is so, so important. And so a lot of that is, you know, the boundaries, the not overworking yourself, the turning your brain off, whether it be sports, video games, sleep, podcasts, like listen to a podcast, or I like to learn, but not anything related to disability, you know, like give me...
Give me just random fun facts or give me a podcast on whatever else that has nothing to do or like I'll even do my real estate classes as long as it has nothing to do. Like the community I'm in and I advocate for and work alongside, then I'm okay.
Daniel Hodges (16:41)
Absolutely. Yeah. You know, it's the same for me, you know, give me, give me history or business podcasts or, you know, things that maybe are tangential a lot of the time, because I'm what I want to still be engaged, but you know, ⁓ something that is, you know, something that allows me to feel like I'm benefiting, but also it's not contributing to burnout.
Caden Nelms (16:55)
Mmm.
Exactly. Okay, so you mentioned this a minute ago and it made me think and I've realized I never thought about this combined. You said that you use a white cane, but sometimes if you have a flare up, you use mobility cane. I realized that those are very much not the same thing. And if you needed them both, do they make one that are like, is it like, that's like a combo of both or do you use both?
Like, how do you do that? That's a very random, probably very stupid question, but I realized I never thought about it.
Daniel Hodges (17:37)
No, no.
Yeah, so, ⁓ it is, there may be combos out there. I just kind of have a piecemeal set up. So what I'll usually do if I can is I'll be using my, my long white cane, my vision related cane in my right hand. And if I can, I'll be using my mobility cane in my left hand and trying to walk in a coordinated fashion so that I'm getting the feedback I need. And also not tying myself and not.
it's usually doable. I will say though, you know, when I've had situations like coming out after surgery where I'm maybe using a mobility walker or trying to use a wheelchair. Those are tough. There are, there are. Multiple disabled people out there who are very successful at that. My understanding is they've had a ⁓ fair amount of training. I've never had.
Caden Nelms (18:10)
Yeah.
Daniel Hodges (18:38)
any formal training on how to do that. so it's, don't follow my example would be probably the most cogent way I can put it.
Caden Nelms (18:51)
That's fair. Yeah, no,
you're talking about training with wheelchairs. I was in a manual wheelchair when I was young. They brought it to the house and my physical therapist showed me what to do. And I never did it quite right. You know, I always wanted to do it myself. So you're supposed to hold the metal rod on the outside of the wheels to push yourself. I grabbed the wheels. My hands were always dirty. I wouldn't wear the gloves. It was just the whole thing. And then power chair, they're like,
Daniel Hodges (19:13)
Mmm.
Caden Nelms (19:20)
why are you so oddly good at this? And then my dad popped up and was like, it's because he plays video games. And so was the playing video games and our coordination of the joysticks that helped. Even then it was so difficult, but yeah, it takes a lot. And by the time you learn one, they change it from a real-world drive to a mid-wheel drive or a front-wheel drive or ⁓ this thing at the other, it handles differently or whatever it may be.
Daniel Hodges (19:27)
Yep.
Caden Nelms (19:49)
So it's like you're always, you will always be learning how to use a mobility aid or assistive device.
Daniel Hodges (19:57)
Back in 2019, I was out in Vegas for a convention and I was having a really bad flare in one of my feet. of course, know, Vegas convention halls are not small venues. And so they were able to find me a super long white cane, like seven or eight feet long, and procured the use of a power chair for me to be able to get around and do this.
Caden Nelms (20:14)
Mm-mm.
Daniel Hodges (20:28)
It's... You know, I figured it out. It wasn't as bad as it could have been and also on the same front. You could see it was a small miracle. didn't kill anybody. So, you know, there is that.
Caden Nelms (20:40)
If they're in your way, that's on them. That's what I say. If they're in my way and you see me coming, that's on you. So you mentioned this briefly before we started recording and it's in your bio here. We can totally cut this out if you want to talk about it. But you talked about your children.
Daniel Hodges (20:48)
Yeah. ⁓
Caden Nelms (21:06)
having cancer and having to go through that. Are you okay talking about that? Okay. So how you said both of them, correct? Two of your kids? Two out of three.
Daniel Hodges (21:10)
Absolutely.
Two out of three, yeah.
So my ex-wife had a rare form of eye cancer called retinoblastoma and we knew that it was hereditary. And we had done some preliminary legwork to make sure that if they were born with it, we would be prepared. Because we knew that RB always happens within the first few years of life.
In the bilateral sense, hereditary sense, it usually happens in the first couple of years of life. We knew that based on their mom's case, it would probably occur much, much earlier than that. And as it so happened with Heather, our daughter, our firstborn, she actually had her first diagnosis, her first tumor was spotted within her first week of life.
Caden Nelms (21:53)
Mm-hmm.
wow.
Daniel Hodges (22:17)
And
we were starting to have her getting treatment within the first two weeks. We were able to find the right team and find her the right treatment. ⁓ We familiarized ourselves with the literature of the different treatment protocols. And she actually came out exceedingly well, much better than most of her peers.
A lot of times with bilateral retina blastoma, it is commonplace for a child to lose at least one eye based on that in the service of just making sure that it doesn't metastasize to the brain. In her case and in her brother's case, actually both kept, each of them kept both of their eyes. And as it so happens, Heather is actually driving now and Dom will be when he's of age.
Caden Nelms (22:59)
Mm-hmm.
that's amazing. they're they're all good, like clear bill of health in terms of, in terms of the cancer.
Daniel Hodges (23:18)
Yeah.
Yes, although with this particular cancer, they are at a heightened risk of getting a second malignancy just based off of both the genetic factors and also the treatment. And I think that's what people don't often think about, particularly with pediatric cancer, is that beating the original cancer is obviously first and foremost, but the
Caden Nelms (23:33)
Mm-hmm.
Daniel Hodges (23:51)
latent effects from both the disease and then also the anesthesia, the chemo, whatever else you use. know, pediatric cancer, even in remission, is in itself a chronic condition of sorts.
Caden Nelms (24:01)
Mm.
Yeah, absolutely. Well, I know like the long term and after effects of whether it be, you know, the treatment or the cancer itself or just the process along the way. Like I am fortunate to, I mean, I have experienced it personally. However, my dad, he had a very rare cancer that literally men in their 40s get. And he was a man and he was 40.
Daniel Hodges (24:38)
Mm-hmm.
Caden Nelms (24:38)
it was in his mouth, it's called adenoid cystic carcinoma, and it was super rare. But typically when like the more, I guess, common cancers, you do like five to 10 years of follow-up after you're in remission, just to check up, his was 15 to 20 years, just to be sure, because it was so rare, and the next time it would be
in like brain, lungs, heart area. And so does that cause, I know it does for ⁓ my family, I know it does for me, being his son, but does that cause as a parent and knowing the pain that, I mean, even you go through a chronic illnesses, does that give you like a heightened, like, are you always worried about that? Is that something in back of your mind?
Daniel Hodges (25:34)
Absolutely, because especially with RV, they will be followed by an oncologist for the rest of their lives. so yeah, think when you think about it, whether it's, know, if somebody starts having too many headaches or memory loss, or if somebody starts having a joint that's acting out or acting in
Caden Nelms (25:43)
Okay.
Daniel Hodges (26:04)
differently than it should be. Or somebody starts feeling fatigue. You know, you don't just think, okay, maybe it's the flu or maybe they just, you know, twisted, know, twisted their knee or whatever. You automatically have to roll out a second malignancy if anything starts to be persistent. you know, fortunately we've got three pediatric cancer survivors between them and their mom.
And nobody's had a second malignancy, but yeah, they're, you're always thinking about not only monitoring, but you're also thinking about, okay, where are we living in relationship to having a good cancer specialist around? Because you can't just go to your local cancer center down the street. If you're in, let's say Boise, Idaho, and assume that they understand what this
Caden Nelms (26:33)
Mm-hmm.
Daniel Hodges (27:03)
As soon as they understand what retinoblastoma includes, you have to get some fairly specialized care.
Caden Nelms (27:08)
Yeah.
And especially like, I cannot imagine even with my like SMA and my kidney issue that I have and like all the stuff that is very much more common than, um, and less serious as a rare cancer, but I cannot imagine going, moving out of state long-term and having to move all, you know, the files and then refining new people and then re-explain because everybody's diagnosis.
and experiences are so individualized. And I think a lot of able-bodied people, maybe even a lot of doctors and medical individuals in medical industry don't understand that. It's not just look in a book, this, this, and this happened. It's, yeah, these things are symptoms or these things happen, but like, what do you experience? And that's just a hard thing to have to transfer.
Daniel Hodges (28:06)
Absolutely.
Yeah. And when, and when, when the kids were younger, um, there was that balance of trying to find a place that was affordable and also had good healthcare. And then because neither, neither parent drove, we were also looking for somebody somewhere that had, you know, some sort of good mass transit. You know, this is back before Uber and this did Instacart or you were ubiquitous. so.
It took a lot of trial and error. never quite found what we were looking for. Um, just tried to make the best out of what we could. But to your point, I was thinking about when, when Dom, our youngest was born, we actually were trying to get him the proper screening that he needed. And we had the protocols on our side. We knew our stuff and the head of the ophthalmology department at a
Children's Hospital in the Pacific Northwest actually got into quite the argument with us because they were saying, oh, well, I don't see anything come back in six months. And we're like, no, try two weeks. And we ended up getting a referral to Philadelphia to get a second opinion and to get things back on track, which we had to fly across the country.
Caden Nelms (29:33)
wow.
Daniel Hodges (29:36)
This whole thing happened on Thursday. We were in Philadelphia Monday morning and it actually ended up with us getting a letter from the hospital saying, you're no longer welcome in our oncology and ophthalmology departments. And I'm like, wait a minute, y'all screwed up, not us.
Caden Nelms (29:54)
Is that legal?
Is that legal to deny service to someone in hospital first off? Like, a doctor's office, I guess. That feels discriminatory, but I'm no longer.
Daniel Hodges (30:00)
⁓ it... tricky.
Well, once,
so once the referral was made, ⁓ once the referral was made, they no longer had a duty of care to that patient. So technically it was legal. Now, whether it's ethical or not, that's a whole nother question.
Caden Nelms (30:27)
So legal but shitty. Yeah, yeah, yeah. That's what it seems. And I want to hear in just a second talk about Peaces of Me Foundation. However, while we're on the topic of your kids and the cancer diagnosis and things like that, do you mind talking about, because I have it here that you...
Daniel Hodges (30:29)
Pretty much.
Caden Nelms (30:54)
nearly lost custody of your first child due to disability discrimination. Can you talk about what happened with that, if you don't mind?
Daniel Hodges (31:02)
Absolutely, that's a great segue into the other. going back to when my ex-wife was pregnant with Heather, we were living in Denver at the time. We're both in our early 20s. we, like I was saying, we're looking for making sure that we had all of the safeguards in place in case we had to deal with cancer right off the bat.
And we had actually started off in one major hospital in the Denver Metro doing the OB there. And then Heather's mom was like, I don't, I don't feel right here. Something feels off. And you're like, okay, you know what? I trust your instincts. I don't feel anything. Something feels off here too. ⁓ So we, we did what we thought was the right thing. What probably was the right thing.
Knowing that blindness discrimination happens in parenting and we said, okay, we're seeing the writing on the wall We're not going to be a statistic and we went and we vetted another hospital in the Denver Metro and they answered all the questions they Checked all the boxes. They made it seem like they were happy to have us aboard everything seemed safe and comfortable and
non-threatening until we get into the delivery room and then everything starts coming apart. And what actually ended up happening is they're openly questioning our ability to parent. They're observing on one hand she's nursing successfully, her diapers are getting changed, we're answering all the questions about how to take a di-
take a temperature and change a diaper, all of these things, there was nothing that they could point to as an indication of neglect. However, because they could not wrap their heads around two blind people parenting, they actually held us in the hospital for an extra day while they waited for grandma to get back from Idaho, because she was going to be visiting for another week or two.
They waited to release us until grandma was back. And then when we got back to our apartment, there's a note on the door saying, this is from Child Protective Services. We'll be back. And as it turned out, the morning that we went to go get her first eye exam, before we could even deal with that, we were meeting with the CPS worker who walked in and thankfully said, you know what? This place is relatively clean. We're just having a newborn.
And, um, you know, there's no drug paraphernalia in here. There's no drug orders in here. Why am I here? And she sits down, opens up her case file. I said, you gotta be kidding me. I'm here based on three referrals, simply because you're blind.
Caden Nelms (34:12)
nurses and doctors probably
Daniel Hodges (34:13)
Um,
a couple of nurses and a social worker. Um, um, yeah, she's a look Colorado law requires me to keep a case open for X amount of time. So I have no choice, but to come out every once in a while and visit you. However, I want you to know that I think this referral is crap and you can think of me as an ally.
I'll bring you diapers, I'll bring you baby clothes, you know, just I'm here to support you. And we were able to trust her with a considerable amount of effort. Because if you think about it, our trust was just broken. One of those referring nurses, it turned out, had been our home nurse during the pregnancy who had come in and seen the state of the apartment, who had come in and talked with us.
Caden Nelms (34:46)
Yeah.
Daniel Hodges (35:08)
knew about our alternative techniques and assistive technology and still, the reason that nurse put on a referral was I made her uncomfortable because I had a tendency to pace around the room. And I'm like, we talked about the fact that I have chronic pain. And so I walk sometimes to get my mind off my foot pain.
Caden Nelms (35:26)
I guess what? That's normal.
Daniel Hodges (35:37)
Somehow that got used against me. But fortunately, she was able to earn our trust and actually did become an ally. But at the same time, I think your audience will empathize with this. It only takes one bad apple for you to have an incredibly difficult time trusting other professionals who say they come in peace.
Caden Nelms (35:38)
Yeah.
Caden Nelms (36:06)
on like on social media, especially if a disabled individual is, um, you know, posting and they have a child that oftentimes due to ableism online, and it's most of the time not justified, they're calling, um, child protective services are calling, you know, we see on a broader scale of non disabled individuals, like able bodied, like just streamers get, um,
you know, the FBI or the bomb threat caught in on their own house while they're live. It happens, you know, happens unfortunately very frequently because people are sick and twisted. But then it trickles down to disabled people getting child protected services because people believe that they shouldn't have kids or they're not getting the adequate care when they're probably getting cared better for than a lot of kids were. ⁓
CPS needs to focus their time and not waste their time on people that don't need it, you know?
Daniel Hodges (37:04)
Absolutely. And one thing I learned well after the fact is that only, only a handful of states actually have explicit protections to preserve the rights of disabled parents. And as I looked into it, you know, a lot of people assume that their state has more protections than it does because let's say Wisconsin was a place I looked into, for instance, where
The law says that a social worker or a case worker has to reasonably believe that the child is in danger. And to an advocate like us, we would say, no social worker would reasonably believe that based on simply the presence of a disability. Okay, here's the problem with that. It's not about what we would believe. It's about what they would believe.
Caden Nelms (37:59)
Mm-hmm.
Daniel Hodges (38:01)
given their training, given their exposure, and when you think about the fact that they have not been trained on the capabilities of parents with disabilities, and given the overall social structure you just got them talking about, there is a world as ignorant and as screwed up as it is, there's a world where doubting our abilities would actually be seen as the reasonable position.
Caden Nelms (38:31)
Yeah, because you get like, again, like you were saying one bad apple, you get one, a person that has biases against disabled individuals because they were never taught or trained or experienced it. Or if they did have a bad experience with a disabled parent one time, they're going to assume it's for, you know, all disabled parents. ⁓ Or they just think, you know, my goodness, I couldn't imagine, I would feel so bad. Like they, again, their bias just feeds into their
Daniel Hodges (38:57)
Yeah.
Caden Nelms (39:00)
And that's why with the whole ADA, says ⁓ reasonable accommodations that aren't a burden to finances or whatever the terms are. That's so subjective. Like to me, a financial burden is more than $100, but to a business, it may be $10,000. ⁓ You know, it's so subjective ⁓ and you can always make it justified if you really want to.
And if it only takes one person to take a child away, which it is, then all it takes is them having a bias or just untrained and uneducated, which is so sad.
Daniel Hodges (39:41)
Yeah. And you know, as it so happens, my cousin and co-founder for Peaces is a trained social worker. ⁓ She was, that's the field she was working on before, before she had to medically retire and ended up doing Pieces with me. And we were, we talked about that on a number of occasions, as well as conversations I've had with other people who are in the healthcare or behavioral health field. And
the level of exposure they get for this sort of circumstance is negligible to non-existence. And so yeah, you're looking at a system that hasn't prepared people to make those decisions from an informed or rational basis. Plus, you're putting them in a high stakes, high stress environment where the consequences of getting things wrong
Caden Nelms (40:20)
huh.
Daniel Hodges (40:39)
can be sometimes life or death, plus you're giving them...
then you are tools, and then finally, you're sticking people in a system that is overwhelming, under-resourced, and contributing to burnout. What do you think is gonna happen in that case?
Caden Nelms (41:03)
Yep. You know, it's interesting
because whenever I would go to the hospital, ⁓ know, there's, there's one major, major hospital here in North Georgia, like system. And then there's some other smaller ones and it's, so interesting because whenever I would go, whether it be for emergency, ⁓ you know, CT scan, neck tray, whatever it may be.
99 % of the staff there and the nurses and whoever do not know how to use a Hoyer lift. I have to have a Hoyer lift transfer, especially before, like I used to, like I've lost weight because it was starting my body. just really needed it. But like previously I was like, there's no way somebody's picking me up. It would hurt me. It would hurt them. would really hurt me. That's a liability. Usually they can't pick anybody up anyway.
Daniel Hodges (41:34)
Hmm.
Caden Nelms (41:54)
unless it's with a sheet or they can transfer themselves. It's just like so many and it's just riskier for everyone involved and but they don't know how to use a lift. So it's my parents teaching the nurses or just doing it for them. How to use a hard to lift, how to use it appropriately. We hope they have one. I've been to a hospital that doesn't have one. I've been the one that they had to go search it down. I had to wait 15 minutes. ⁓ Then another hospital, they have a dedicated lift team.
that do it, which is great. But then for budget cuts, they got rid of the slings. So they don't have a sling, but they have a whole lift team. So you got to like provide your own. Like, what is that? It's, it makes no sense. And like they're neat. My aunt is a nurse. She's gone back so many times. Like she's the highest level you can be without being a doctor essentially. Um, and she's like, you don't get trained on a horny lift. Um, and if they do, it's usually they work in a
Daniel Hodges (42:35)
Wow.
Caden Nelms (42:53)
a nursing home, geriatric facility, something like that, not just in the hospital. I've had nurses argue, say, get over it. I've had them, I've had so many different situations. And again, it goes back to, it's not necessarily on them, it's on the system, like their education and like the system that educates them, not doing their part. First, something I feel like is so basic.
And that goes for most things. But yeah, that's just a very specific one that I regularly have issues with.
Daniel Hodges (43:35)
Yeah, you know, the interesting thing about that too, you mentioned the, ⁓ you mentioned the budget cuts and whatever and getting rid of the sling and my, my lawyer brain and my MHA brain went to this financial quotient and said, wait a minute, you're going to cut that out of the budget and risk a $10 million loss that you will most assuredly lose. What fiscal equation are you looking at?
Caden Nelms (44:02)
Yeah, just like-
One, don't think the medical, like hospitals should have to worry about budgeting, like budget cuts, I mean, like that should not be there. Like they should be supported in a way that they do not have to. I mean, this is someone who doesn't work in the medical field, let me clarify. But it feels like something that that should be like the last thing in their mind, you know? But beyond that, yeah, like, I don't.
I mean, I don't even know what would be better to budget cut this because I only know my personal experience. yeah, and they're not having a whole lift or having one and a lift team for the entire hospital. like three or four people, an entire team dedicated to it. That's the only thing they do. But then they don't have the slings makes zero sense. And don't tell the patient ahead of time before the appointment.
Daniel Hodges (44:59)
Absolutely.
Caden Nelms (45:00)
I don't understand it, but going from that, know I've already like held you hostage for 40 minutes. I'm so sorry. ⁓ transitioning from that, I want to talk about your foundation Peaces of Me P E A C E S of me, right? Yeah, got it right. Okay. Making sure tell me about it. Like what, what was the motivation for it? What? ⁓ I have the
Daniel Hodges (45:09)
It's okay.
Caden Nelms (45:29)
Let me read this here. says, Peaces of Me works to eliminate stigma associated with disability, physical difference, and chronic illness by providing resources and connections to individuals and families and appropriate training to professionals in these spheres. We really did like segue that really well. I didn't even mean to.
Daniel Hodges (45:51)
Yeah,
yeah, so this came about when I had been watching both myself and a lot of people I cared about falling through the cracks with both the hospital systems and the advocacy systems and just getting to the point where I was ready to start shaking my fist. And at the same time, my cousin Christy
Caden Nelms (46:16)
Mm-hmm.
Daniel Hodges (46:20)
had medically retired due to her own chronic pain from behavioral health and had also had a daughter who was born with an unexpected limb difference. And we were talking about that and she said, know, I'm a trained social worker and I walked, I watched another social worker walk into the, know, to the, to the hospital room after my daughter was born.
not have any clue where to send my husband and I for help with this, with her limb difference. And to deal with this is ridiculous. I said, yeah, you're right. And this is a common thing, whether it's limb difference or blindness or mobility or whatever the case may be, underneath all of these different disabilities and differences.
there's a series of misconceptions and a real disconnect between people and the resources they need access to. And we talked about it, you know what, I'm not doing this by myself, especially between in my first and second year of law school. ⁓ But ⁓ I'll, you know, I'll head this up if you'll take this journey with me. And fortunately she said yes. And we spelled peaces P-E-A-C-E-S.
First, because we wanted people to understand that having a disability does not equal broken. So we wanted to say, hey, as you learn to lean into your gifts and talents and embrace who you are, there's real peace. There's real affirmation that comes from that. And we wanted to start from that standpoint. And it eventually evolved into us saying, we believe that access is a human right.
And we are firm on that principle, but we don't believe you have to start burning stuff down to prove your points. So we are on one hand, very fervent advocates. And yet we are also an organization that really prioritizes meeting people where they are and calling them in. So when we're meeting with medical professionals or business owners,
Caden Nelms (48:22)
Yeah.
Daniel Hodges (48:43)
or nonprofit leaders, clergy, whoever it is. Our first thing is we say, look, first of all, thank you for having the humility and the willingness to meet with us. And by virtue of you taking that step, there's grace here. There's the ability for you to ask the difficult, maybe even in delicate questions. There's the ability for you to set aside your fear.
of saying something and having it come out sideways. We're not here to judge you on that. We're simply here to help you understand the value of what real inclusion and accessibility brings to the table. And then we're here to help you create a plan that is replicable, sustainable, and relevant to you.
regarding how you can implement best practices into whatever you're doing. Because if we give an organization feedback and that feedback is so extreme or off the mark that it puts them out of business the next day, we have not done our jobs. Our job is to weave these things into their culture in a way that becomes self-perpetuating. And that's what we try to do with pieces.
Caden Nelms (50:06)
I am obsessed with Peaces of Me Everybody go check it out. That's such a funny sentence for me to say as well. That sounds like so self-absorbed. Everyone go check it out. The link to the website and the information and actually all of Daniel's links will be in show notes and descriptions.
Daniel Hodges (50:14)
Hehehehe
Ha!
Caden Nelms (50:29)
say there is a business owner or someone that has some say so at a company, whether it be a small business, big business that's listening right now, what is one inexpensive way that they can, what is one inexpensive thing rather that they can do and their job and company can do to be more inclusive to... ⁓
everyone but disabled individuals specifically.
Daniel Hodges (50:58)
I always say it starts by taking steps toward creating a culture where everyone has the ability to show up as the best person of themselves. I can give you all the instruction in the world on accommodations and on creating belonging and all of these other things. It will not land unless you have a culture that is built on trust, that is built on
harvesting the best out of your people that is built on using, you know, design thinking or some other form of continuous improvement. If you don't have those things in place, there's, there's really, it won't stick. But if you do have those things in place, if you've got some sort of continuous improvement strategy, if you're teaching people how to think outside the box and problem solve, then
You've already got probably 80 % of the problem solved and we can go fix the other 20.
Caden Nelms (52:02)
being welcoming and putting effort in is free everybody. That's all you gotta do is start. The initiative to start I feel like is one of the hardest things and most important things for people to do, not in just this situation, but in most situations where it involves change. Excuse me, I feel like a lot of people get nervous or just don't know where to begin. getting started, always like if someone makes an effort, I always applaud them.
and then be like, okay, now let's keep going, you know.
Daniel Hodges (52:33)
Yeah, I mean, it's basic psychology, It's nothing more than using the power of positive feedback. That's what we're taught to do in every relationship is use positive feedback and positive reinforcement. That's really all it is.
Caden Nelms (52:55)
Yeah, exactly. So if someone wants to work with Peaces of Me or you or just talk to you, where can they find you?
Daniel Hodges (53:06)
So, heading over to peacesofme.org and there is a special spot on the website called the Access Opportunity Tour. And it is where you can come and get really what I think is one of a kind training for your organization of any size, nonprofit, for-profit, house of worship, town government, we don't care. It's all about helping you create a culture. If you want to connect with me individually,
You can either drop me a line on the website. There's a contact us feature that I will definitely see, or you can reach out to me, Daniel Hodges, JDMHA on LinkedIn. ⁓ and I would encourage your audience, let's get connected. Let's continue this conversation. And what, know, one of the reasons I do shows like this is to expand my personal network and to look for more collaborations. So.
If this has touched you in any way, please get in touch.
Caden Nelms (54:07)
Absolutely, I also, think the biggest part of any advocacy or being disabled or being a part of any community is ⁓ finding those connections and people. So one, I will definitely be going to your website again and ⁓ filling out or joining you for one of those sessions just for learning more, because I think it's always good to hear from other people. And ⁓ I do a little bit of everything, whether I'm working by myself or with a friend or adding...
part-time job, so I feel like it's something I could take with me everywhere. And I encourage everyone to go check it out, peacesofme.org, P-E-A-C-E-S of me.org. And yeah, all the links will be in the description and show notes, and I encourage everyone to go check it out. Reach out to Daniel, build the connection. You never know when you may need to talk to him. He's very smart and educated on this. He has...
many more degrees than I do ⁓ and way smarter than I am. I say here in yap on the internet, he actually knows what he's talking about. ⁓ So Daniel, thank you so much for being here and I hope we get to talk again soon.
Daniel Hodges (55:20)
Thank you and likewise, it's been great chatting with you.
