In the first episode of NOTABLE, host Adrienne Beckham (she/her) talks with Nico Meyering (he/him), about his path to leadership, advocacy, and community engagement as a disabled man.
Nico Meyering lives with Congenital Central Hypoventilation Syndrome, a rare and potentially life-limiting disability with under 2500 cases globally. After earning his MPA from Binghamton University and serving two AmeriCorps terms which took him to California and Texas, Nico went back his home state and served as a board member of the CCHS Family Network for six years. Since 2021 Nico has focused on improving outcomes for all disabled people. He is the chairman of the Philadelphia Mayor’s Commission on People with Disabilities, a trustee for Awesome Disability, and the Vice-President of Young Involved Philadelphia.
Thanks for support from Pennsylvania Council for the Arts, a state agency funded by the Commonwealth of Pennsylvania and the National Endowment for the Arts.
Also Available on Spotify
Transcript
[00:00:00.13] – Adrienne Beckham
In today’s episode of Notable, I had the privilege of sitting down with Nico Meyering, whose path to leadership involves advocacy, connection, and what it means to create community with fellow disabled members while navigating the rules and realities of board spaces. Why don’t you come join our conversation? I would love to know what your favorite book or movie is.
[00:00:30.01] – Nico Meyering
Lately, I’ve been really on a contemporary romance kick. So con-roms are really experiencing kind of this renaissance period at bookstores right now. It always seems like there’s a fairly simple, even sometimes funny love story, that is uncomplicated in all of the ways that the real world isn’t right. So that kind of escapism, that kind of assured happy ending really, really appeals to me at some points.
My name is Nico Meyering, and I use he/him pronouns. I’m a white man with parted blonde hair, large blue and brown spectacles, and a blue sweater. I have on a black headset on my ears, and I’m seated in front of a white wall in an office background.
After serving on the board of the CCHS Family Network from 2015-2021, I took my disability work to a wider scale. By now, I’ve worked on initiatives and projects with Global Genes, the National Organization for Rare Disorders, Partners for Youth with Disabilities, Indeed, Diversability, Chronically Capable, and other groups. But nowadays, I’m more focused on doing disability work and civic work right here in Philadelphia.
I’ve been disabled since birth, but my disability advocacy and my time in disabled spaces only really began 9 years ago. More specifically, I’m someone with a rare disability. The term orphan disease is thrown around a lot to describe my condition, or in general, any conditions where the diagnosis exists among so few people that incentive to do research, incentive to improve treatment options, or even to find the C word, a cure, just it’s not there because you don’t have a return on investment, whether you’re motivated by money, altruism, or professional advancement.
My condition is called Congenital Central Hypoventilation Syndrome, or CCHS. When we’re sleeping, we need to be ventilated mechanically. There’s numerous ways you could do that by now. But other side effects of CCHS, since it affects your nervous system, and your nervous system kind of plays a small role in everything that your body does, there was lots of pretty weird side effects. I had cardiac pauses. Sometimes, my eyes are not as sharp as they possibly could be, nor are my ears, so that’s not great. And it’s always been challenging for me to really gain or maintain weight, which is all fine and good if I was someone who is 60 and 70 and struggled with his weight, but I’m in my 30s, and I’ve always been very skinny. A strong wind could just pick me up and carry me away. So there’s that as well.
[00:03:52.22] – Adrienne Beckham
I kind of relate a little bit to your journey, as I was also born with my disability, and it is a sort of rare myopathy that not a lot of people really know about. So I’d be interested to hear if you feel comfortable sharing a little bit about your journey transitioning into disability advocacy work in space.
[00:04:21.01] – Nico Meyering
I’ve been very active in online disabled spaces and have been growing my involvement in Philadelphia’s disability and civic community these past few years especially. I love this big scrappy city that we call Philadelphia, but I didn’t grow up here. I grew up in rural New York, way upstate. And I’ve also lived in California and Texas by this point. So I’ve got this kind of expat experience as well, this nagging sense that you can’t really go home again or that the home that I had no longer exists.
In living in different states and in different settings, I’ve realized that progress is not equally distributed, and that’s bad. The future itself is not equally distributed, unfortunately. And it’s those twin realizations that helped inspire me to bring as many resources as possible to as many people as possible. And that’s kind of where I got my start in civic leadership and in volunteering.
When I was born, my parents did me a huge favor, and they went looking for other families with CCHS experience. Currently, there’s about 2,000 cases worldwide. It’s still a very small population. We do still all know each other. And that network of families that my parents began to collect and began to foster has now become a federally recognized nonprofit. And I served on the board of that organization from 2015-2021, as I probably had mentioned.
It was a huge honor to benefit that disease community because those are the people that I grew up with. They’re my friends. I consider them a second family. But then, three big things happened. First was the COVID pandemic that disproportionately impacted and negatively impacted, let’s be clear, disabled people here in the US and worldwide. The second was that I was getting more experience with board leadership, getting more experience in civic life. And I recognized that I had probably reached the ceiling of what I was going to be able to achieve with the network. I observed that my fellow board members were not always present at meetings, but they also weren’t rolling off the board. So we had some board rot, we weren’t always meeting our objectives, and ultimately, I had to follow my passion to approach a wider disease community.
And then the third thing that happened, unfortunately, was the untimely passing of one of my dear friends who was himself a disabled man. He was autistic, and he really played to the stereotype of autism that you might see in pop culture, or what have you. So I felt some kind of need to help fill the space that was left by his passing, as my friend Alec was a huge disability advocate and did much of the work that I now do in terms of building coalitions, sharing resources, and championing not only my own projects, but the projects of others.
[00:08:14.20] – Adrienne Beckham
I’d love to hear a little bit more about your perspective on the concept of leadership in general.
[00:08:23.23] – Nico Meyering
The kind of leadership that I see in disabled circles is very different, Adrienne, very different from, rather, depictions of leadership that we might see in pop culture or that we might see in other areas of life, in the office, on the athletics field, whatever else.
I often find that leadership in disabled spaces or disabled leadership tends to focus more around cooperation, brainstorming, and also resource sharing. When I’m fortunate enough to be in a leadership role, I try to be very honest about what I can bring to the table and how I would approach that leadership role. I don’t always know every fact. I can’t do a deep dive on every issue. But if a team member comes to me with an idea, I’ll be the guy who says yes. While I connect that person with additional resources, loop them in with others who could help out, and then also lend my own sweat equity, I tend to have this really strong belief in the power of peer support and the power of community. Just as peers have supported me, just as communities have supported my growth, so, too, do I want those communities to be active and available for other people as well.
You know, I’ve had a lot of lucky breaks and a lot of privileges in my life, and quite frankly, those privileges should exist for every person, every disabled person. And every disabled person should have the same kinds of opportunities that I’ve had as well.
[00:10:08.06] – Adrienne Beckham
I’d love to hear about how that approach to leadership has maybe translated in your experiences in boardrooms and in board meetings.
[00:10:17.12] – Nico Meyering
When I first began my board member journey with some organization in Ithaca, New York, I think, back in 2012, I kind of erred too closely to the side of caution. I waited and dithered to make decisions until I knew everybody was on board or until I knew that everybody had a chance to voice their opinion. And that’s fine and dandy. But organizations, projects, and boards don’t always have the benefit of a wide open timeline. Eventually, you need to make something happen. And one area in which I’ve made progress is in being more decisive and having the confidence to have the final say.
I think that my approach to leadership helps to involve people right away. So the organizations that I am lucky enough to serve with tend to not have as much turnover or tend to have lower rates of disengagement than other organizations. Because I do want to hear your perspective right away, I do want to rely upon your expertise.
In one of the boards that I’m on currently, we recruited a fresh batch of board members who got onboarded and came with their own kind of programmatic focus and areas of expertise that perhaps our board didn’t have originally. Those changing values, priorities, and skill sets have led us to change the focus of the overall organization. In more concrete terms, we weren’t historically very interested in green initiatives or eco-friendly initiatives, but now we have a board member who is really behind being eco-friendly and chipping into other sustainability organizations and initiatives. As a result, we are doing more programming like park cleanups, tree plantings, being present at eco fairs or green fairs, and really trying to align ourselves with one of the stated priorities of Philadelphia’s new mayor, which is to make Philadelphia clean and green.
Philadelphia is a beautiful city that has over 500 public parks. So there is a very, very expansive territory that we can really get active in. And we’ve partnered with different gardening groups or friends of this park or that park to make those events a success. It’s been really useful for us.
I realize that I’m kind of going off on a tangent, but in this example that I give of increasing our eco
-focused programming, it’s been very successful for us because we have been able to partner with other organizations. It’s a low-lift but high-impact kind of practice. Because when you and a bunch of your friends go and clean up the park on the corner, you bring your rakes, you bring your water bottles, you get messy, and you clean the space, and it looks good, you feel good about yourself, you take a picture and people celebrate that on social media. So it gets our name out there, it makes us feel good, and you almost immediately see the impact of your work. That’s what my kind of leadership allows organizations to do.
Lastly, I will close by noting that among disabled leadership circles, I do see a lot of redundancy, backup, and support that might not always be present in able-bodied environments. If one person regularly takes notes at a meeting, but one day they can’t make it, they have a doctor’s disappointment; or the next day they can’t make it, or maybe they can, but they have brain fog. In those instances, it would be good to have somebody else able to take notes, somebody else willing to step into the secretary role temporarily. Having that redundancy, having those fallback plans allows disabled organizations to be more flexible, to be more adaptable, and to be a bit more resilient if a member is temporarily absent or eventually when they roll off the board.
[00:15:13.11] – Adrienne Beckham
In general, I think to be, to be a disabled human in this world, you are forced to be adaptable. So I think that it makes a lot of sense to me that maybe that is something that translates into this sort of larger
like leadership board spaces. I find that the amount of knowledge that one has about what it means to be on a board varies drastically based on the sort of community that you grow up in. And depending on the privileges you’ve had in your life, you may not even know what a board is. So I’d love to sort of hear about your journey from that respect.
[00:16:17.00] – Nico Meyering
Took a fairly consistent volunteer role at different community groups, so I got the chance to sit in on more informal planning sessions and to kind of see, long-term, what it’s like to implement a solution, try it out, and find it to be either effective and appropriate or, alternatively, ineffective and inappropriate.
More concretely, I was living in Binghamton, New York in the early 2010s. I was fresh out of college, and I was below poverty level, I was food insecure, I made use of a free community meal, and then, the next weekend I returned to volunteer at that community meal. That’s where I continued volunteering for about a year and a half. Eventually, my volunteering went beyond just doing the day in and day out stuff and helping to more concretely shape the future of the organization; recruiting more volunteers, securing more food sources or food giveaway sources, coming up with some kind of run of show each weekend, so we’re not always running around trying to think about what we’re going to make for our guests an hour or a half hour before they enter the door.
Then, when it came time for me to actually join a board in a more formal way, it wasn’t really that different from helping out at that old community meal. It wasn’t that different from being part of a club in high school or college. The only difference was that it was a bit more formal in terms of, say, following Robert’s Rules of Order, having a clear procedure for your meeting, and also adhering fairly strictly to roles and elected leadership in those roles.
The first actual board that I sat on was pretty odd. I was living in Ithaca, New York, which is where Cornell University is, and there is also, right downtown, a cooperatively-owned bookstore. If you think like a co-op market, you might think of a grocery store or something else, but this… Well, it remains the only co-op bookstore that I’ve ever heard of. It came to pass that they had an owners’ meeting the summer that I lived in Ithaca. And I really loved being among other bookworms. I loved what the bookstore was doing for the community in terms of holding book clubs, holding author readings or poetry readings, and also the discount service that they had for Ithaca’s numerous college students and grad students.
When it came time to elect officers, nobody wanted to step up into the secretary role. And I thought it would be fairly easy to just record meetings or to take notes at meetings and then be the secretary.
So that’s kind of how I slotted in. And I got to learn about how boards function. I got to learn about what it looks like to bring in an outside consultant. I got to learn about how interpersonal conflict can impact a board’s decisions, and there’s positive and negative aspects about that. But what had been missing from my experience, I guess, would be more formalized board member education, which I eventually got many years later.
[00:20:14.13] – Adrienne Beckham
How do you feel like your sort of professional side of you that shows up in board meetings, how does that align with who you are in your personal life? Do you feel like there is a sort of major difference between who you are personally versus who you are professionally?
[00:20:36.22] – Nico Meyering
If I’m left to my own devices, or if I’m around someone that I feel comfortable with, my wife, my friends, then I’m naturally, perhaps, more expressive and more excited. And when, in my experience, at least, a man brings that into a professional space, and he shows that he’s excited, he shows that he’s eager about something, that often translates into being seen as childish, being seen as not as serious
as your counterparts. That’s not wonderful, but it’s also not a practice that I can really push back against. So I do have to be more subdued, more professionally focused in board meetings, and that’s too bad. But as I said, it can’t be changed.
In other regards, it is easy to translate other aspects of my personality over from the personal to the professional. We can always laugh about how terrible Philadelphia sports teams are doing. We can always talk about how difficult it is to find parking in Philadelphia’s more urban or more central districts. These are the things that can help ease people into talking about more difficult or more dry, more dull topics during board meetings.
I’m also good at leading conversations and trying to get folks to speak up, trying to hear from participants that perhaps hadn’t always been the first to speak up, usually. Those things are easy to carry over. But I wish that my enthusiasm wasn’t always seen as less than.
[00:22:39.05] – Adrienne Beckham
That’s such a real, honest, and earnest thing to just recognize. It is unfortunate that those pieces of oneself need to be left behind in order to maybe sort of assimilate into these sort of more formal spaces, particularly just because, I think, disabled joy is something that doesn’t necessarily always have its ability to come forth. Particularly in mainstream media, we don’t always see a lot of stories of disabled joy. Just kind of tying that to what you were saying, just in general, I feel like it would be nice to have more space for that in all areas.
I’d love to know about your experiences regarding the implicit and explicit sort of rules of engagement that you sort of encounter on a board. I think they’re… We kind of touched on this a little bit, but they’re the sort of policies that are actually laid out for a board member and written down. And then there’s also just the culture of that particular organization that you are serving on. I’d love to know about your experiences sort of learning those rules and navigating those rules.
[00:24:37.11] – Nico Meyering
This is a good question, Adrienne, because as you say, there’s defined policies as set forth in an organization’s bylaws or charter. Some organizations adhere really strictly to what’s written down, others don’t. And in those kinds of organizations, what the bylaws say and then what actually happens in practice can be very different things. Not necessarily contradictory, but different.
One thing that I like to do for myself, as someone who is awkward, who is an introvert, and who never really had close social connections in childhood, I like to know kind of what the day in or day out or week in, week out is of being a board member. Some boards meet more often than others. Some boards have an environment of “We’re just colleagues.” And then some have “We’re colleagues but also friends,” which is pretty beneficial, I think, in the long run. Asking questions, like, how often do you want me to communicate with other board members, how often do we meet, in which medium do we meet; do we do it asynchronously over Slack, do we meet over Zoom or Google Meet, if so, is there an expectation that we have our cameras on, is there an expectation that we each speak up or put things in the chat; what forms of input are valued for the board and what forms of output are valued. It’s not an exhaustive questionnaire by any means, but it helps you hit the ground running, or at least, not seem like the outsider that you naturally start as.
I’ve had a lot of success in doing that.
We spoke previously before the break, probably, if memory serves, right at the top of our meeting, about how I just kind of jumped into board membership because I saw it as the next opportunity in front of me. Then I talked also about how I got that formal board training later on. I got that formal
board training from a board that I now currently serve on the executive team for. Young Involved Philadelphia helps to bring civic engagement to young Philadelphians. We make better Philadelphia happen by engaging Philadelphia’s youngest adults in the beautiful civic and social impact fabric that is Philadelphia daily life.
One of our most popular programs, which I originally encountered as a program participant and which I now run as the program head, is called Board Prep. It’s exactly what it sounds like on the tin. It prepares young Philadelphians to be good board members. Simple eight-week program, two, going to increase to three, but at the time I took it, two in-person events, and then you’re done.
We learned all about board governance, strategic planning, the importance of diversity on boards, fundraising—that necessary evil, financial management away from fundraising, how to keep the appropriate ledger, how to keep your budgets and your account separate, how to communicate about spending with your treasurer and/or your finance committee—if you have one, legal and ethical considerations. These were all ways that I learned how to be an effective board member.
Then at the end of each board prep cohort, we gathered 13, maybe 15, different Philadelphia nonprofits seeking board members to come have what is essentially a resource fair. Maybe you went to one in college. You just walk around the room and see what organizations resonate with you and which don’t. And I tell my students the exact same thing that I’ve taken to doing, which is asking how often those boards meet, what the communication expectation is, what kinds of productivity, input, and output does the organization recognize as productive and valid, so on and so forth. Just as not every board focuses on the same topic area, and not every board has the same structure, not every board is going to value the same outputs that you do, not every board is going to value the inputs that you are willing to give, and that’s okay.
What’s most important is that you find a board and an organization that makes you feel good about giving back and which makes your giving back that much more effective. That’s how I approach encountering newborns. And now, in my current civic life, as I sit on one executive board, and then I lead a whole other different executive board, how I interface with other organizations as well.
[00:30:21.17] – Adrienne Beckham
Do you feel accepted and included as a member of the boards that you’ve served on as a more introverted person? And how has that experience changed for you personally as you’ve started to learn more about how to prep to join a new board?
[00:30:48.06] – Nico Meyering
This is an excellent question. Thank you, Adrienne. I am an introvert, and as part of my disability, was under pretty constant supervision as a kid. Any form of socializing after school was fairly heavily monitored to the point where I didn’t see the point, really. What happened was that I recognized that board meetings, or even earlier in my life, club meetings, gave me that social outlet that I was missing previously. And it’s actually, as an introvert, a really good idea to use civic engagement as your social outlet. I’ll tell you why.
When you’re using board meetings as a social outlet, a lot of uncertainties go away. Imagine a board meeting with a set schedule, set agenda, and you generally know who will be there as compared to meeting up with someone for coffee. If you’re meeting up with someone for coffee, my questions might involve what will we talk about, how long will we spend together, is it awkward if we sit too long, do we go out and do another thing after coffee, or do we just leave it at coffee. So many questions.
But that’s not the case in a board meeting where, again, you know what’d you talk about, you know the people who will be there, and you know generally how long that social hour will last.
I’ve had a lot of success in beginning board tenure as someone among colleagues and then ending board tenure as someone among friends. One thing that I have to get a little bit better on, I think, is maintaining those friendships once I’m off the board. But I haven’t, haven’t quite cracked that nut yet.
[00:33:03.09] – Adrienne Beckham
I’d love to sort of know about your experiences advocating for your own personal access needs in board meeting spaces and how that experience has been like how that sort of advocation for yourself. You’ve already touched on it a little bit, but if there’s anything else that maybe comes to mind about doing that self advocacy that’s maybe separate from the actual work of what you’re doing on the board.
[00:33:37.01] – Nico Meyering
Yeah, absolutely. Access comes in many ways, and not always in ways that we might initially think or initially expect. One way that I do make access for myself is that I love closed captioning. I use it in Zoom meetings like this one right now on the TV, on Google Meet. Sometimes, I don’t generally prefer Google Meet, but it’s whatever, I guess. And I think that as more people use the Internet for a wider array of purposes, closed captioning is one really quick way to increase the access of a given tool or program.
There are other considerations for access that are not as apparent as captioning, having ASL interpreters, or whatever you could think of. Access is also about having simple language so that our disabled guys, gals, and non-binary pals with cognitive disorders, brain fog, or anything else can still follow along in a meeting, in a presentation, or what have you in those kinds of settings.
Another thing that I like to have just for myself, and which you provided, Adrienne, is any questions in advance of actually logging onto a Zoom. In my mind, it’s not really any different than distributing a meeting agenda before the actual meeting. It helps you get more done during the meeting. It helps reduce miscommunication and errors related to miscommunication, and it evens the playing field for everybody in the meeting.
As I’ve gotten to live in New York’s countryside, I guess I’ll say, and then doing my grad work in New York’s more urban areas, then moving out to San Francisco, California back 10 years ago—10 years ago exactly, and then down into like Texas college town, I realized that progress is here, but it is not equally distributed. The future is here, but the future is not equally distributed. People in San Francisco, people in Philadelphia might have tools, resources, and help that people in Oneonta, New York or Denton, Texas might not necessarily have. This unequal access to accessibility tools and features really grinds my gears. That’s why, I think, I place such an emphasis on resource sharing.
Because we don’t need to make things happen for people all the time, we just need to give them the tools to let them make things happen for themselves. I think that’s a more sustainable solution.
[00:36:58.09] – Adrienne Beckham
I find that particular non-disabled individuals and sort of other identity groups that have maybe a bit more experience in some of these leadership spaces, they have the benefit of being able to build these networks. I wonder more just about how you’ve benefited from being able to network with other disabled members of board service and how that has helped you.
[00:37:44.23] – Nico Meyering
One way that being on a board has helped me connect with other disabled people is that I’m more keenly aware of just how connected every human is. Here in the US, we have this love for being independent, and that’s fantastic. But what we don’t realize is that even as independent people, we still rely upon each other. We still have to live together in a given neighborhood or in a given city. That necessarily requires compromise, negotiation, communication, push and pull. So too, is it like that in a board.
I think that disabled people are natural-born problem solvers. I think that disabled people could make very good project managers if they want to enter that profession. I think that disabled people are good at making backup plans, at being flexible. All of those skills I mentioned, and more, make them really great board candidates if they find a slot that really interests them or a niche that really strikes their fancy.
[00:39:13.11] – Adrienne Beckham
With that, I think we can let you go for today with just one more giant massive thank you for this time.
[00:39:22.04] – Nico Meyering
Adrienne, thank you so much for having me. Julian and the folks behind the camera, I appreciate your work. You’ve done a great job.
[00:39:30.19] – Adrienne Beckham
All right, thank you, Nico, so much. Take care.
[00:39:33.11] – Nico Meyering
All right, take care now. Bye-bye.
