Nancy Smith (5:26)

Yeah, well, first off, I want to thank you for having me on this podcast and I have long admired the work that you do in your leadership in non profits. So it is an honor to be here with you. And it's also really fun for us as BFFs to do this.

Glenda Testone (5:45)

That's very sweet. I didn't pay her to say that. It's just because she's my bff. She has to or else.

Nancy Smith (5:51)

That's. That's true. That's true. So as you you noted today, I'm the Executive Director of Activating Change and our work focuses on ending two injustices in the lives of people with disabilities and deaf people. Widespread victimization and mass incarceration, both of which people with disabilities are much more likely to experience than people without disabilities and hearing people. And my journey in this work actually started when we graduated from graduate school. Right after I left graduate school, I moved to Cincinnati. I started working at the YWCA there. And I was leading a project to prevent family violence across the life spectrum. And the funder really issued a charge to us, which was for it to be very collaborative in nature. And you know me, and one of my personal mottos is if it's worth doing, it's worth overdoing. And so I set out on a path to develop the strongest, largest collaborative that was possible to address family violence in Cincinnati. I was new to the community, and I really didn't understand the nonprofit landscape. So I decided as a first step, just to have one on one meetings with organizations that you would imagine would be part of that collaborative effort. And I asked everyone at the end who I should talk to that wasn't typically around the table. And one of the last conversations that I had, someone suggested that I go meet with someone at the center for Independent Living. And I met with Suzanne, who is a friend and colleague of mine today. And I asked her how violence and abuse was showing up in their organization and in the people that they served. And she told me that more than 90% of the people that they served had experienced abuse, either as a child or as an adult, and that most of those folks had never received any formal support to help them heal or to help them live free from violence. And I was just blown away by that. I really sat with that in the moment, both in terms of feeling shock that there were such a huge portion of our community, people in our community, who were being harmed and nothing was really done about it. But also I was really sitting with the fact that I had been doing work to end violence, and I had not thought before about people with disabilities. And it was a real aha moment where I understood kind of my own privilege as a person without a disability and as a hearing person. And those two things. Just how alarming violence was in the lives of people with disabilities, and my own awareness about myself and what I had done before that was unintentionally exclusionary, led me right then and there to say, I'm going to do something about this, and I'm going to dedicate my career and figure out, given who I am and. And my skills and resources, how I can bring it to this issue and change the experiences for people with disabilities and deaf people.

Glenda Testone (9:22)

Thank you for sharing that. I know some of that story, but I did not know all of that story. And it sounds like a common story. You're sort of doing the work you do and you're talking to the usual suspects. And then people say, hey, Talk to these folks over here and you learn something and realize that some people are being left out that you hadn't even thought of before, and they are actually tremendously represented in the group of folks you're trying to serve. I just want to underscore that Nancy is definitely a bring it, overdo it kind of person. We could talk about your running, we could talk about your baking. I mean, I could go on and on, but that's not what this podcast is about. Okay. This podcast is about. And this is why it's so interesting for us to be talking. It's really about what I realized even after years and years of being friends with Nancy, really starting to talk about your work has helped me realize some of the ways in which, you know, I'm leaving people out or I am using ableist language that I didn't even realize at the beginning. The intro of this, I often say, you know, to listeners, I have run, walked and limped in your shoes. And I just want to bring that example up because it's a good example of like, felt like an innocent thing to say. And Nancy, you know, God love you pointed out, like, hey, that's kind of ableist. Let's not say it that way. So I that's the reason I'm so excited to have you on the podcast today. I know that our listeners are really good people who want to do really good things in the world, and they may not even realize that they are missing this population or that they are even worse than missing that they might be offending or dissuading those folks from engaging in their organization. So I want you to speak for a second, if you would, to listeners who run or work in nonprofits that don't focus on people with disabilities or deaf people. They are probably not deaf or don't have a disability themselves. So this is not in their personal life or their professional life. How do underlying stereotypes and misperceptions about people with disabilities show up in nonprofit work?

Nancy Smith (11:55)

Well, you know, we grow up in a society that is very ableist, you know, that very much believes that people without disabilities are superior to those with disabilities. We also grow up in a society that is oddest. So it believes that people who are hearing are superior to people without. And we breathe that in like smog. And like you said, even in the language that we use, we are often as people without disabilities and as hearing people, unaware of the ways in which we have been shaped and then how we continue to practice that as we're running non profits, as we're building programs. And I think there's a number of sort of stereotypes and biases that come to mind. One is that disabilities are visible and they're obvious. And, you know, there are so many disabilities and chronic health conditions that we cannot see. And when we rely on a disability as being obvious, we can unintentionally overlook people who have invisible disabilities, mental health conditions, neurodivergence, and we really fail to provide accommodations. You know, what do they need to fully participate in our programming? How can we adjust our programming so that it accounts for how they move through this world and how they experience this world? So certainly that is. Is one. I think another that's really pervasive is the stereotype that people with disabilities are dependent and that they need charity or they need our pity. And unfortunately, I think that this stereotype can really perpetuate a savior sort of complex that also is common in many aspects of nonprofits where, you know, organizations focus on helping people with disabilities rather than walking alongside them and giving them additional tools and resources and knowledge so that they can make their own decisions. And I see that quite a bit where advocates might, because of this thought that people with disabilities are dependent, they might just do everything for a person rather than inviting the person into a process to figure out what actually makes sense for them. You know, we are our own best experts, and that's what we really should be relying on rather than my thinking of what you need.

Glenda Testone (14:43)

Yeah, that's so interesting. And I could see a lot of. You know, I think something that was very familiar to me when I was running nonprofits was the danger of white saviorism, you know, of white folks like myself coming in and saying, well, let me help you, and, you know, do these things. It sounds like there's almost like an ableism saviorism that folks need to guard against, that people can assume folks with a disability or deaf people can't do certain things. And so I guess now is maybe a good time to start debunking some of those myths. And you've already done that with two. But I. For the people out there who are thinking, you know, look, I run an animal shelter, or I'm advocating for climate change. What does this have to do with me? What. What would you say to those folks?

Nancy Smith (15:42)

I absolutely want to answer that, but I do want to go back to the white savior complex because I think something that's really important. Another stereotype is that disability operates in a silo and that it's a niche community that is distinct from every other community. And often that leads people to not see how it. How disability intersects with other forms of oppression. And instead of being separate, it actually, people with disabilities come from communities of color, come from LGBT communities, and many other communities that are marginalized. And I think being able to see people as whole people with the full multiplicity of their identities helps us provide more holistic and inclusive services. And that has been really important in our work is really recognizing that intersectionality includes disability.

Glenda Testone (16:43)

Yeah, I really appreciate that point, and I can see how we all maybe unintentionally do that and sort of divide. Folks, I'm curious. You. You know, when we were chatting about this, and I kind of asked you this question and said, you know, okay, I'm one of those people who, you know, coming back to, like, I'm fighting for climate change. I'm running an animal shelter. To your first point, I don't see any people with disabilities on my staff or in my community. I don't know any deaf people that I'm working with. What would you say to those folks? Why should they care about this?

Nancy Smith (17:23)

Yeah, well, you know, I think we are taught to, say, see disability as special and as different and as unique, but actually, disability is incredibly ordinary. You know, more than 60 million people in the United States have a disability. That is one in four people who have a disability. And, you know, as you look at people across the life spectrum, you see even higher rates of disability among older people, for example. So I think you already are interacting and serving people with disabilities. It could be that you have people with disabilities on your staff, on your board. You have people with disabilities volunteering. Plus, there's an entire community of people with disabilities in your community who really can benefit from the work that you do, because people with disabilities, in many ways, have the same interests and the same needs as well as unique needs because of their experience with disability. And so, for me, it's really just about being more intentional that you already are serving people with disabilities, and how can we do that better? And how can people with disabilities feel more welcomed and engaged and participate in the amazing programming that you offer?

Glenda Testone (19:01)

You're going exactly to the place I want to go. And I'm so glad you said that. That was one of the biggest aha moments for me. I think when we started talking about this was, this isn't unique and special and rare. This is actually quite common. So we're not talking about us and them. We're talking about us. Whatever you are doing, whatever organization you're running. So how do nonprofit leaders who maybe, like me, are sort of like, oh, wow, this is a part of my community and the work that I do. How do those folks start to center people to think about people with disabilities and people who are deaf? What should they do? Where. Where to begin?

Nancy Smith (19:50)

You know, I think there are very practical, concrete, relatively easy things that we as nonprofit leaders can do. One of them is to conduct an accessibility audit of your organization. So that's reviewing your physical space, it's reviewing your website to really identify where the barriers are to accessibility and where some of the facilitators are. Because there are good things happening in organizations as well. And the great news is there are a ton of tools that already exist that you can use as an organization. There is the Accessibility Checker, which is a website that you can go to. It's www.accessibilitychecker.org. you can type your website address into that, and it's going to give you a report of what about your website works for people with disabilities, and where are the areas where you can make some enhancements so people with disabilities can access the valuable information on your website. Similarly, there is. There are checklists that you can use to check the accessibility of your physical space. Are your bathrooms accessible? Do they have grab bars? Can you easily move through the space without obstacles? For example, are there only stairs as a way into a building? And there are checklists that help you do this. The ADA checklist for existing facilities is easy to find online, and it really just guides you through very specific questions that you can complete. And at the end, you know, you really get an understanding of where your barriers are and where those facilitators are. And I would encourage everyone to include people with disabilities in that review process. That helps you capture the lived experience, and it also helps you identify creative solutions because people with disabilities have been navigating inaccessible spaces and have been identifying creative solutions. And they can be amazing partners that you absolutely should compensate for their time and their expertise, but they can help partner with you to be able to become more accessible.

Glenda Testone (22:20)

Yeah, I love that. That makes a lot of sense and seems like a good idea for. For folks regardless, to sort of see where you fall. I want to talk for just a second. I know we're into it at this point, but I do want to talk about. We've been saying people with disabilities and deaf people throughout this conversation and so identifying two, but potentially overlapping intersecting groups. But can you talk about the deaf community and deaf people for a second? Because I want to make sure people understand why we're separating These two. It's one of those language things, things that people may not even realize is important. So could you talk for just a second about why that's important?

Nancy Smith (23:05)

Yeah. I mean, language is so important. So, you know, the first thing that I would say is always follow the lead of the person in front of you who has the lived experience and use the language that they use. So as an organization, we have chosen to talk about people with disabilities and deaf people. And that choice and decision really came from long term engagement and relationship building both with people with disabilities and deaf people. And what we learned through really sitting with many deaf people to understand their experience is that many deaf people identify and belong to a really amazing culture here in the United States, which are deaf cultures and deaf communities. And, you know, there are many things that sort of unify people as member of those cultures and communities, but one of them is the use of sign language, predominantly American Sign Language in the United States. But there are many other sign languages that people use. And that, for many deaf people, creates a very strong identity. And one way for us to reflect the communities that we want to reach and for us to reflect their unique experiences is in the language that we use. And so by specifically naming deaf communities, it says to the community, hey, you understand something about me. And it's a signal that this is a place that we can understand them and we can meet their needs. And it's just an important reflection of the lived experience of being deaf.

Glenda Testone (24:52)

Yeah, yeah, that makes so much sense. And we're sort of getting into. Starting to get into your organization specifically and your approach, which is, I think, somewhat unique. So the approach of activating change, to quote you, is building a new field at the intersections, which I thought was such an interesting concept. And I wonder if you could talk about what does that mean and why. Why that method of doing this work.

Nancy Smith (25:26)

Yeah, you know, for us, you know, we're working on making sure that people with disabilities and deaf people live free from violence, that they live in communities and are not confined, and that they are affirmed. And if you look at sort of the nonprofit landscape, we have lots of amazing organizations that are working to end violence, and we have lots of amazing organizations that are working to just redefine justice and to end mass incarceration. And often what's missing from those organizations is a disability lens. And so at activating change, instead of creating something brand new, you know, our approach is to work with the organizations that already exist. So work with victim service organizations, rape crisis centers, domestic violence programs, organizations that are reforming the criminal legal system and to help them build their capacity to be able to extend their mission to people with disabilities. And we believe that that cannot be done alone and that it requires not just building the capacity, but it really requires really strong partnerships with disability organizations. And so, again, because people with disabilities are whole people, you know, we have to really kind of mirror that the experience of people with disabilities. And that includes bringing disability organizations and survivor advocacy and criminal justice reform organizations together and helping them build a new knowledge and a new capacity right at that intersection.

Glenda Testone (27:20)

Yeah. And I think that is a different way of doing things. I'm sure you're not the only ones doing that. But it's interesting to think about how to take two strong communities or multiple strong communities and bring them together to really positively impact each other. And that's kind of how I hear the work that you're doing. I want to go back for a second and sort of start at the beginning and talk about the fact, because there may be nonprofit leaders out there that are in your shoes who also find themselves leading organizations that are focused on issues or things that they do not have lived experience in. And you are indeed doing that with activating change. And I think. I mean, I'm biased because I'm your best friend, but I think doing that very well. How do you do that? And how. What are your thoughts about that? Because that is a challenging place to be. So I'm wondering how you wrap your head around that, and what are the things you do to make that work?

Nancy Smith (28:33)

Yeah. You know, I was recently asked by someone what keeps me up at night? And this is the very issue that keeps me up at night. And I continually ask myself whether I am the right person to lead this organization because I do not have lived experience. Experience as a person with a disability and as a deaf person. And so far, I have answered that affirmatively, and I have continued to do this work, and I have continued to lead this organization. I don't think that it is for everyone, and I'm not sure that it is a model for nonprofit leadership that I would even recommend for our organization. I think, you know, because our work is really focused on working with other nonprofit organizations and also reflecting their lived experience and reflecting the lived experience of people with disabilities and deaf people. I think I have been able to bring a unique perspective to that. But again, it's not easy. I think it requires, on my part, a different type of leadership. I am incredibly collaborative. I very much am committed to sharing power and sharing decision making with the many People on my staff who do have disabilities and who are deaf. I am very aware of my power and my privilege and work really hard to minimize that and to use my privileges to really partner with people with disabilities and deaf people to have the greatest impact. And I'm really open. You know, I invite people to let me know if I've made a mistake, especially, you know, if I have done something that is ableist or honest or racist. I really want to know that. I do a lot of work on my own to sort of put prevent that and to spot that myself. But I invite, you know, my team and people outside of the team to sort of have those conversations with me to hold me accountable. And I'm really committed to learning from it and to doing something different. So for me, it's kind of a mix of, you know, a leadership style that is very collaborative. It is also a mix of, you know, really bringing something unique in terms of skill and a perspective to the organization that we need. And then it's also, you know, just continually assessing whether it makes sense and what needs to happen on my end for it to make sense.

Glenda Testone (31:31)

Yeah, yeah, that I appreciate that perspective. And I know that you were not just talking about like in terms of feedback and, and if you get something wrong, we're not just talking about it Once a year, 360 review or something. We're talking about like on a regular basis. Small moments. I think you said to me, I really actively, repeatedly encourage people to tell me like, did I, you know, did I do that right? Was that the way. The best way it could have been to try and facilitate what you're trying to get to happen. So I'm curious about. Something came up recently at the lab and I thought it might be an interesting case study for you all. So we, we are trying to be more accessible and less ableist and honest, which is a new word that I learned that I imagine is. Is sort of like bias against folks who cannot hear. Is that an accurate definition?

Nancy Smith (32:35)

I would say deaf people, because there's. The whole experience of being deaf is really about using sign language.

Glenda Testone (32:43)

Yeah. So I, so what I was going to say, I found that so interesting and I. And little things. So we were saying, well, well, we're, we're doing a good job because we do a lot of videos in the lab and when we do workshops or expert seminars and we always, always, always have captioning. But someone had said to me recently, you know, that's not really good enough for deaf people who use American Sign Language. Can you talk about that a little bit? Because that was a learning for me.

Nancy Smith (33:17)

Yeah. You know, for many people who are deaf, written English is a second language, but also it sign language, which is very visual.

Glenda Testone (33:32)

Yeah.

Nancy Smith (33:32)

Is a primary language. It is the way in which, you know, most deaf people are communicating all of the time. And so, you know, by only providing captions, for example, requires deaf people who are, you know, primarily communicating through sign language to learn in a second secondary language and in a language that is not what is used in their day to day. There is no written equivalent to sign language. And so it can be a barrier to learning, especially if the information is dense or if the information is heavy in any way or unfamiliar. It's a lot harder, you know, to learn that in a different language. You know, I, you know, for example, took French in high school and I was pretty fluent in French and I went to France. I actually lived for a month with a family and I went to school during that time period with one of the members of the family and I was just completely lost. It was incredibly overwhelming to try to learn in French. And you know, even though I was fluent or conversationally fluent in French, it's just, it's very different to learn in your primary language. And so you can have picture in picture interpretation, you can have captions, and then you can also have an interpreter who appears in a box who can sign the content that you're sharing. And if that's not possible, you can hire an interpreter for someone who needs to have access to that video based content and they can do live interpreting to make that more access accessible and more impactful for a deaf person.

Glenda Testone (35:27)

Yeah, that's super helpful. I appreciate, and I appreciate the comparison between, you know, as an English speaking person learning French conversationally and then going to France and seeing the written word and being in a classroom and that being very, very challenging. Is there anything else you want our listeners to know about your work, about these communities, about what they can do?

Nancy Smith (35:52)

Yeah, I would say probably one of the best things that you can do is involve people with disabilities in your work and in decision making related to the work that you do. And that includes hiring people with disabilities. It includes having people with disabilities on your board and as volunteers. But it can also be, you know, having a working group of people with disabilities from your community and have asking for their guidance on how to make your service more accessible and how to make it, you know, just better meet the needs of people with disabilities and deaf people. And again, I want to do another plug to Compensate people with lived experience who are helping to shape your programming. So I think that's incredibly important. You cannot do this work without doing it alongside people with disabilities and deaf people.

Glenda Testone (36:56)

Yep.

Nancy Smith (36:57)

And then the last thing that I would say is to just be open. I know that many of us can be afraid that we're going to say the wrong thing or we're going to do the wrong thing.

Glenda Testone (37:09)

Yeah.

Nancy Smith (37:09)

And unfortunately, you know, the. We let perfection be sort of the enemy of the good. And in my experience. Experience, I think being open and being sort of willing to account for a mistake and to learn from it is far more important, and it goes much longer of a way than not doing anything because we're afraid to do something wrong.

Glenda Testone (37:40)

Yeah.

Nancy Smith (37:41)

So I would say, really being just open, know that you're going to make mistakes and that you can account for the mistakes that you make. I have made many mistakes as a person without a disability and a deaf person. I have used ableist language. I have, you know, not intentionally, but I have excluded people with disabilities and deaf people, and I have accounted for that. I have, you know, listened and, you know, apologized, and I have committed to not make that mistake again and to carry that with me and. And to be more committed and more, you know, passionate about this. And so I would just invite everyone to use that same spirit in the work that they do around, you know, serving people with disabilities in their community.

Glenda Testone (38:37)

Yeah, I really appreciate that. Your point on compensation, I think, is an important one. And I can relate, coming from the LGBT space, where we might find ourselves in a situation where we're doing something with the trans community, for example, and if we don't have a trans person as part of the working group or on the panel, and we need to get that person or people to bring their lived experience, compensating them for that. It makes a ton of. I'm not sure everybody's heard of that. Sometimes I think, you know, there are these sort of progressive, nonprofit bubbles that some of us live in. And so I. I just wanted to focus on that for a second to say that, you know, the thinking behind that is if you don't have someone's. If you don't have that lived experience at the table, and you need to invite someone or you want to invite someone to bring that. Paying them for sharing that lived experience is something that is incredibly equitable and something to really consider. So I want to say that for listeners out there who are like, what are you talking about? If we're trying to make our building more accessible, and we want to invite people with disability. Don't they just want to share that information?

Nancy Smith (40:01)

So, yeah, I would say, you know, I think that we compensate what we value.

Glenda Testone (40:10)

Yep.

Nancy Smith (40:10)

And I think we need to unlearn that work experience is more valuable than lived experience.

Glenda Testone (40:21)

Yes.

Nancy Smith (40:21)

And we need to see the value of lived experience. And I think financially compensating is one way to show that value and that appreciation that the person has and to really see that as expertise, which it is expertise. And I would say there may be some folks listening to this, maybe that are all volunteer, that don't have financial resources as an organization. And there, I would say you can get creative about compensating people with lived experience. You may have access to a learning opportunity that someone otherwise would not have, and you might be able, for example, to facilitate their participation in that learning opportunity. You know, they may be looking for ways to build their skills or to, you know, advance in their career through internship and things of that nature. So I definitely believe in compensating people with lived experience. I also do recognize that some organizations are all volunteer, and so there are other ways that you can compensate people.

Glenda Testone (41:39)

I love that. Just an underscore on creativity. You don't need to have a lot of money to do this. I want to end on your point about. A lot of people may recognize that this is something they should do or they need to do, but they're scared of saying the wrong thing, doing the wrong thing, messing up in some way. And it makes me think about, in this work that we all do, so much of the magic is actually in the discomfort. If we get out of our comfort zones and try to do the things we're really trying to do, that's where we can learn and grow. And so I just want to say, you know, to our listeners, try it. Really, really, this is something. And thank you for being so candid and vulnerable and saying you have made mistakes and gotten through that, because I think that does help people understand that, like, this is a process. This is not a. Perfection can be the enemy of the good, but that's not actually what we're shooting for. Ooh, that's a bad one. That's not actually.

Nancy Smith (42:52)

Actually what we're striving for.

Glenda Testone (42:54)

Thank you, Nancy. It's not what we're. It's really not. Well, thank you so much for being on the podcast and for all of your work and your wisdom, and I'll see you soon, I hope.

Nancy Smith (43:05)

Yeah. Thank you so much for having me. This was a lot of fun.

Glenda Testone (43:09)

Thanks for everyone listening. It's great to have you. I hope you learned something. I hope you walk away and try something new. And if you mess up, that's okay, just acknowledge it, apologize and try again. Don't stop. Thanks everyone.

Joan Gary (43:24)

Transform the way you lead your nonprofit with expert advice and a vibrant community. At our Nonprofit Leadership Lab, thousands of kindred spirits from all around the world find time saving resources, trainings from experts and a best in class team to help you. You get a good dose of me and a remarkable community. You will never feel alone with us and we have the antidote to so many of the challenges you face. To learn more and request an invitation, head on over to nonprofitleadershiplab.com podcast.

Glenda Testone (44:05)

Thank you for spending time with us today. We hope this conversation provides valuable insights as you navigate the messy but meaningful world of nonprofit nonprofits. A special thanks to Donor Perfect for sponsoring this episode and for their dedication to empowering nonprofits like yours to do more good. For more resources to support your work, visit joengary.com podcast we think you'll find a lot of helpful things there. Most importantly, thank you for all you do to make the world a better place, one small or large step at a time. Talk to you all next time.