Discovering the Value of Including Persons with Disabilities with Your Overall Inclusion Efforts

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Discovering the Value of Including Persons with Disabilities with Your Overall Inclusion Efforts Interview with Daniel Hodges

Creating access is usually a much simpler process than we imaging subtle changes make a world of difference. Access and inclusion are catalysts for innovation that benefit everyone. No viewing people with disabilities as people to serve, but also including them in nonprofit leadership.

Questions to be addressed in this interview:

  • What is a disability and how many people have it?
  • How do access and inclusion benefit everyone?
  • How difficult is it be inclusive and to create access?
  • What’s the difference between access and accommodation?

Pieces of Me Foundation

Daniel HodgesDaniel Hodges has spent his entire life learning to thrive in a body that some consider to be deeply flawed. As someone who was born blind, and with a connective tissue disorder, I am well-acquainted with the low expectations encountered by those with disabilities. These experiences have ignited a fire in me to help create a world in which everyone is afforded the opportunity to reach their potential without the barriers that hold so many of us back. In 2018, I entered the University of Baltimore School of Law, with aspirations of practicing at the intersection of healthcare and civil rights law. My involvement in Peaces of Me is an outgrowth of these efforts. Our collective passion for advocacy and furtherance of equity and inclusion runs deep. I am blessed and honored to be part of this amazing team.

More at https://peacesofme.org

 

Read the Interview

Hugh Ballou: Hello, everyone. This is Hugh Ballou back for another great episode of The Nonprofit Exchange, where we talk to leaders about their experience, their knowledge, what they have learned, what the challenges are, maybe even what they did that they wish they hadn’t done. We call those learning opportunities. We learn from each other and our experiences. We offer this podcast for leaders working in membership organizations, charities, churches, and more. It’s all about doing good in a for-purpose enterprise, not a framework. It’s defining the next step for philanthropy. How do we show love for humankind and bring goodness to the world? That’s in the work we all do.

My guest today is a member of the SynerVision private community of nonprofit leaders. Daniel is an important contributor to the live sessions we have. I have grown to admire Daniel and his work, so I invited him onto the podcast today and asked him to share his story. Talk about why you started this nonprofit. It’s still in the early stage. I thought it was important to talk about the work because it’s in an area that has been invisible to me most of my life, and I am learning a lot from Daniel that is valuable. Daniel Hodges, welcome. Please share a little bit about who Daniel is, a little bit about your background, leading up to why you started this nonprofit. Thank you for being here.

Daniel Hodges: Absolutely. Thank you so much for having me. As you mentioned, my name is Daniel Hodges. I am a recent graduate from the University of Baltimore School of Law. I have got three kids and am currently living in Springfield, Missouri. Fun fact about me: I have lived in 10 states, most of them multiple times.

I think that’s a good segue into the fact that I am someone who was born blind and who had parents who didn’t get access to the resources they needed. When I was growing up, there was serious doubt as to whether I would be able to travel and get anywhere throughout my life. I didn’t learn how to cross the street independently until I was 18 years old for instance. This fact that I have lived all over the place, I have traveled to most of the major cities in the U.S. That was not something that was a given when I was growing up, even in early adulthood.

When I was 30 years old, I was also diagnosed with a connective tissue disorder, which is something that is congenital but is difficult to diagnose because there is no lab test for it. It’s a clinical diagnosis. Many of us with rare diseases that fall into that category, we can go years or sometimes decades without getting the answers we need medically. That is part of what led me into being a lawyer and wanting to practice at the intersection of health care and civil rights. It’s also what ultimately led me to want to start Peaces of Me Foundation so that we could hope to address some of those needs that are still outstanding.

Hugh: It’s called the Peaces of Me Foundation, right?

Daniel: It’s spelled “Peace” because it’s a play on words. We wanted to bring home the message that as people with disabilities, we are not incomplete. We are not 80% human or whatever someone might imply. But we are missing the peace that comes from accepting and embracing who we are and being able to move forward to fulfill our potential once we have really brought that into our self-identity and then can project outward the confidence and security that comes from not only being okay with who we are, but liking and loving who we are regardless of what the world says, and then being able to go out and contribute and participate fully in society in a way that hasn’t really been the case.

Hugh: You were born blind?

Daniel: Correct.

Hugh: I think you shared with me that the doctor told your parents something that was very disparaging. What was that?

Daniel: When I was a teenager, my parents were told, “You can’t let him ride a rollercoaster. You can’t let him play sports. You can’t let him do anything that could potentially cause any kind of bump to the head because his retinas are so fragile. Heaven forbid he lose that little bit of eyesight that is left.” Somewhere along the way, in my late teens, they came across another professional who said, “Well, he is blind. He doesn’t have much in the way of education. All he will ever be able to do is cane chairs.” That is all he could aspire to.”

Hugh: Wow. Did you hear that conversation? Or did they tell you about it? What did you think?

Daniel: I was mostly privy to it. There may have been part of the conversation where he took my parents aside. I wasn’t dumb. I knew where this was going. There was always that difference of I can see the fact that I am intellectually up with my peers. At that point, I was in good enough shape where if I had a wooden bat and someone soft-tossed me a baseball, I could hit it 450 feet. At the same time, there was that other part of me that says, “I have been out of school for five years. No one has been able to homeschool me or give me real education. I have to use these print books that are size 70 font in order to read. I can’t read. I can’t really write. I can’t do all of these things. There is a gap between what I want to do and what everyone says I can do.” It was a real struggle for most of my childhood into early adulthood.

Hugh: You just shared with us that you recently graduated from law school. That is a long way from caning chairs.

Daniel: It is. I have to say that everyone says law school is a lot of reading. That’s right. You get a 100-page reading assignment, and the professor doesn’t even blink. It is so interesting because I mentioned having those books that are the size of a desk. How can I do that? Somewhere along the way, when I was almost 18 years old, someone introduced me to Braille. I was even introduced to screen reading technology. Into adulthood, I realized I actually like to read. Here I am at 37, and I read all of the time. I wouldn’t have imagined that growing up because it was such a chore. It wasn’t that I hated reading, but the way that reading was presented to me wasn’t accessible. Those lines blurred. That is the transition that helped me, for the reading component of law school, get through because of things like access and being able to identify what are actual opportunities for growth rather than things that are accessibility barriers that are completely beyond my control?

Hugh: We all have challenges. Sometimes we just play the victim and say, “I can’t do any better.” Was there someone in your life that was a leader who motivated you to see differently, to think differently, to want to experience life differently?

Daniel: I’ve had several. One of them is my kids’ mom, who stepped in when I just turned 18 and said, “You’re smart. You have had the deck stacked against you, but this isn’t you. You can do so much more.” She took it upon herself, her and her mom, to introduce me to more people, who said, “Here is how to use a cane. Here are the expectations you should be setting for yourself.”

Four years ago, as I was sitting there floundering after I graduated with my Bachelor’s degree, I had been in the advocacy world, I had been searching for jobs, I had just had surgery on my femur and hip and didn’t know what to do. A mentor of mine, who I have to add here, I had just connected with a few months’ prior and who had no experience in the disability world other than what I had been telling her about advocacy and civility, she was the first one who turned around and said, “Wait a minute. You’re teaching me all of these things. I’m learning and changing my perspective. You have the advocacy knowledge. You have the intellect. You have the ability to speak and write. Why wouldn’t you go to law school?” I said, “I don’t know if I can afford it. I don’t know about the pain, the fatigue, this and that.” She said, “Wait a minute. This isn’t adding up.” Even in that sense, there was another person who said, “You need to lift your understanding of what you’re capable of and go for it. Stop asking what you think you can do. Start asking what you want to do. Go figure it out.”

In those two examples, you had one person who was blind who had been around forever in this world, and one person who was not disabled. They both played an integral part in their own way.

Hugh: That’s amazing. Two people could perceive something they did not have the ability to perceive prior to that conversation. I know you’ve helped me become aware of many things since I’ve known you. You just kept showing up for the community meetings in the SynerVision community and adding a lot of value and good observations to the conversation. Thank you for that level of influence you’ve had for me. I’ll be 75 this year and am learning new stuff all the time. As leaders, we should never stop developing.

We’re using this term “disability.” Why don’t we add some context? What is a disability?

Daniel: First of all, thanks for that compliment. I was drawn to you specifically because you are a lifelong learner that I strive to be. That’s been reciprocated in spades as far as what I have learned from you.

In terms of disability, the law defines it as something within us, some sort of condition or physical or mental characteristic, that causes some sort of difficulty in a daily task or significant life task. The reason I’m dancing around it is because really, we are all people. We are all people with our own characteristics, our own minds and spirits. The true disability is the fact that most of this world was not designed for the broad spectrum of people. It was designed for one kind of person in mind. Everybody is expected to adapt to that system, regardless of whether or not it is painful enough. People say the pain point is when you have to make an “accommodation” because you just can’t squeeze into that norm anymore.

We are trying to say, “Wait a minute. If you look at it from a design perspective, is the fact that I can’t see truly a disability? Not if material is presented correctly.” It’s a complex concept. It’s one I want to drill down on in my work because people are out there feeling broken because they are being taught they are the problem instead of the system that is the problem.

Hugh: Wow. You heard it here. Disability means a lot of things, and it’s more complex than a simple dictionary answer. I get that. In the broad sense of disability, how many people have it?

Daniel: A conservative estimate would put it at about one in four people. As more invisible disabilities are beginning to be recognized, including chronic health conditions, both physical and mental, that number is surely going up. As a starting point, we would say at least one in four, probably many more.

Hugh: Some of those things that you said were invisible, give an example of what that would be.

Daniel: This could be anything from someone who has an arthritic condition to someone who has a connective tissue disorder like myself to someone who may be experiencing anxiety or depression or chronic fatigue, any number of things that may or may not be readily visible to the outside world but are nonetheless quite impactful. Especially people in that camp, they deal with a double-edged sword of whatever circumstances they happen to be navigating but also the outside world saying, “You look fine to me,” which in and of itself can be quite the micro-aggression.

Hugh: Not to mention people who are blind. We choose what we recognize, don’t we?

Daniel: We do. It goes back to this idea of can we possibly squeeze you so you are just across that line of being “normal” because societally that is what we have chosen to put on a pedestal, whereas for someone with an invisible disability, if we can completely flip that on its side and say, “You’re okay. You have your circumstances you’re dealing with. Some are pleasant, and some are not. But you’re okay. We need to make sure that you’re getting whatever support and resources you need so that you can fulfill your potential.” That releases a lot of positive energy back out into the world. People are not trying to contort themselves anymore to fit into something that makes the world more comfortable. They are living their authentic life and are out there serving, participating, and working in a way that embraces and includes all of them.

Hugh: I heard you say you are 37. You went to law school. You have an undergraduate degree, and you founded Peaces of Me Foundation. What was your motivation to start that nonprofit?

Daniel: We wanted to start it because we knew there were a lot of people still falling through the gaps. I noticed as we were looking for resources years ago for my children when they were still in active treatment for cancer, you would run into social workers in hospitals, and it was their job to be able to tell you what resources were out there. They often didn’t know because there was no comprehensive resource. You had people trying to build these resource lists themselves.

I said, “That’s not possible. We have a model for how one builds an encyclopedic knowledge of the world around us. It’s called Wikipedia. If we take that same model, utilize the power of the crowd to build the best resource list, the best knowledge base in the world, then you have the platform to start addressing societal misconceptions, interpersonal misconceptions because you have people connected through a site with resources and knowledge when and where they need to be shared.” That can empower people to make whatever strides they need to make to advance to that next stage of life.

Hugh: I had the pleasure of meeting part of your board last night. You have attracted some good folks. I shared with you that we are influencers and attract people. We don’t attract what we need; we attract what we are. You’re a person of a high level of influence, so I was quite impressed by your board.

The title you chose today, “Discovering the Value of Including Persons with Disabilities in Your Overall Inclusion Efforts.” Would you like to elaborate on that please?

Daniel: By the way, I completely agree with you with my board. They are phenomenal.

Oftentimes, we have run into a situation where someone will say, “We would like to be more inclusive. We would like to be more accessible. But we don’t know how. We don’t really know what that means.” Instead of beating people over the head with this demand, we on our team have taken the approach of saying: Let’s start at square one. Let’s look at the fact that it’s been proven that access usually does not cost much, if any, money. It does not require tearing things down and starting over again if it’s done right, especially if you get it on the ground floor as far as what you’re developing, if it’s a physical structure, a cyber structure, or anything in between. It can be built in. It can be built in well, much less expensively than people imagine, and it can improve the design process for everyone.

That gets back to this idea of universal access. What benefits me, what benefits someone else’s disability, often ends up being the catalyst for innovation for everyone regardless of whether they identify as having a disability. That is the beauty of universal access.

Hugh: That is very informative. I was a serious student of facilitation 35 years ago. I am a conductor, as you know. I took that skill and moved it into the boardroom to design meetings in a different way because nobody likes boring, unproductive meetings. People hate going to meetings. I live to eliminate boring, unproductive meetings because we only have so many days on this Earth, so let’s make the most of each one of them. We drive for results in meetings. It’s the culture of high performance that is important.

From the very beginning, in my books and lessons, I teach people to think about creating diversity in your team. I didn’t have in mind people with disabilities. I am learning that is another dimension of diversity. I’m a boomer. There is five generations alive, at least. We need to think about the difference in perspective. There are so many nuances to diversity and inclusion. It’s an intentionality of thinking, “Why don’t we get people who don’t all think the same and experience life the same way?” I am used to seeing things in a generic sense. How do we perceive? We use that word in English incorrectly, as to see. We see and perceive things.

Creating a board. I was impressed with your board. There are people of different ages, different walks of life, different backgrounds. There is men and women. There is gray hair and young folks. You have a lot of bases covered, which adds a richness in the thought process and the creativity. Many times, we just sluff over problems. Suck it up, deal with it, we’ll figure it out, rather than how we can accommodate everyone. You used the words “access” and “accommodate.” Can you talk about the two of those?

Daniel: Let’s start with accommodation. By its very nature, accommodation is an intentional deviation from the norm to bring someone closer to the norm or to bring them into the group at least nominally. Just by that verbiage, you can tell it’s still a separation. It’s not quite there.

Access, particularly universal access, on the other hand means we are going to utilize a platform where everyone is part of that nucleus regardless of how they are obtaining or utilizing information or a physical space. It’s all about drilling down to what is the core of what you’re trying to do? Opening up all of the doors to see what are the various ways we can make sure that core is met effectively without getting tied into one particular strategy?

For instance, if you’re looking at, “I want to have a board of people who can digest really complicated information and make strategic decisions,” are you looking for people who are good readers of print material, or are you looking for people who have high reading retention, regardless of the modality, who can sift through the material, create insights from it, and use those insights to discover new solutions? If you’re the latter, it doesn’t matter print or Braille or digitally read. The modality of how you acquire the information is purely secondary. Utilization of the information is key. That is the picture of universal access.

Hugh: I’ve been through a lot of years without hearing that message. It’s quite astounding. We can all say, “There is too much to know.” It is this eternal learning and discovery mode that is exciting. There is so much more to learn and accomplish.

What is your vision for Peaces of Me?

Daniel: My vision is we are building a community all over the world, people who identify as having a disability, people who do not, people who want to be allies. It doesn’t matter what disability(s) you identify as having because that is another area that has been left behind. If you have circumstances that don’t even have a label, but you need help, anyone can come and share what they know and learn.

The reason for keeping it so broad is because we have no idea what amazing idea someone in Africa or Canada or Australia might have that would absolutely be a paradigm shift for the rest of the world if they had the platform to use it. Similarly, it doesn’t matter if you’re blind or deaf or use a wheelchair or have depression. The underlying stigma is the same. Many of the accessibility hurdles have common roots. Bring your knowledge. Bring your desire to learn. When we build that community up, we create a power that really raises the overall level of consciousness for everyone by virtue of creating that new knowledge and insight.

Hugh: Raising the bar for everyone. There is a benefit to all concerned. That is part of the rotary when we test. You talked along the way about how to be inclusive and create access. I think you said it wasn’t real difficult or expensive. What are some of the things that we can do to be inclusive?

Daniel: For example, with websites, there are what they call the web content accessibility guidelines, which are internationally adopted although not as well enforced as we would like. A lot of them are making sure that your website has proper headings, making sure your images has alt text. Alt text is the caption you would see below an image in a magazine. “This is a person doing X, Y, and Z.” That makes it to where anyone regardless of whether or not they can see knows what the image is trying to convey.

There are things like in a PowerPoint presentation, making sure that what is being shown on the screen is being read aloud. The verbiage coming out of the person’s mouth matches the slides. By the way, that not only benefits those of us who are blind or have a reading difficulty, but it also increases retention for everyone who is able to see and hear what is going on. That is a beautiful nugget there.

Hugh: Those little nuggets are precious. Go ahead.

Daniel: Being conscientious and asking yourself, “What am I trying to accomplish here? Am I getting locked into a certain pattern? If X amount of work needs to be done, does it have to be done over eight consecutive hours? Or can that person break up that work so they can accommodate their chronic pain or fatigue?” One of the few blessings that has come out of COVID is this idea that work from home can be accomplished. This is something the disability world has been fighting for for years because it helps address chronic pain, chronic fatigue, mobility issues, transportation issues, and more.

There are a million other things I could mention. I’m sure I forgot some important ones. It’s really asking yourself what am I trying to accomplish on a nuclear level? How do I make sure that I am opening up as many pathways to get to that point as possible so that I am not inadvertently excluding people who might very well be the best candidate for getting into that nucleus simply because of the barriers I am putting up that I didn’t realize I was putting up?

Hugh: The older I get, the more I discover I don’t know, and the more barriers I have. I had them as far back as I can remember. We all can become more aware. The stuff about the website, I can learn. The alt text is mutually beneficial because that’s what the search engines look for. The file name, it shouldn’t be goobledy gook.jpeg. It should be something of substance. The alt tags should be relevant to what the image is. It not only helps people who have visual disabilities, but it helps the search engines find the stuff that you put up. Otherwise, they are never found, and it won’t benefit you.

Like you said, everything that you’re suggesting is mutually beneficial and helpful, and probably fills in a lot more gaps than we might have realized to begin with.

Daniel: I’ll just point out that you know more than you realize. Even in what you just explained. That is the case for a lot of people.

Hugh: It is. You’re here to encourage. What I know about Daniel is he is willing to be a guest on a podcast. Send an email to Hugh@HughBallou.com. I am reticent to put your email on the webpage because there are a lot of spammers. Mine is already polluted, so it doesn’t matter. I will connect you with Daniel. Also go to PeacesOfMe.org. There is a Contact page you can use on there. You can also get on his mailing list. Daniel, Peaces of Me is just getting out to shoot. From where I sit, it has huge potential.

There are a lot of helpful things that you have acquainted us with today. As we end this part of the interview, what is a challenge or thought that you’d like to leave people with today?

Daniel: First of all, I want to say we are out there on Facebook, Instagram, LinkedIn, and Twitter. Through our interns, we just launched our own YouTube channel. Look for us on social media.

As far as a final thought goes, it really comes back to everyone, regardless of what position you’re in, whether you identify as having a disability or not, we all have something to learn. We really want the same thing. If you’re leading an organization, if you’re sitting on a board, you want the best candidates for whatever position. As I was mentioning earlier, those best candidates are often being filtered out vis a vis accessibility barriers. Inclusion is the path forward to have the best people in the best positions possible. Asking questions, learning, setting aside one’s assumptions, all of us, that is the path forward to creating real authentic inclusion, bringing in people who are able to serve whatever mission you are trying to serve to the fullest extent possible. This is something that has ripple effects far beyond any of us in the way it unlocks people and unlocks potential. That potential unlocks more potential for people to be brought in who are able to serve and participate. The beauty of what is able to be accomplished is simply immense. The magnitude, we don’t even know what this can do because it’s so powerful.

Hugh: You are powerful. You are a powerful influence on my life. I know Peaces of Me will be a powerful influence on many people. Daniel Hodges, thank you for being the guest on The Nonprofit Exchange today.

Daniel: Thank you so much for having me.

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