August 31, 2023
Amplify Inclusion Podcast
It’s the 30th episode of Amplify Inclusion! Emily Voorde, Founder and CEO of INTO Strategies, reflects on her journey of disability identity and discusses the importance of accessible environments. Check out the episode now or view the full transcript below. To access closed captions, you must be logged into a Podbean user account.
Amplify Inclusion is a podcast where we share authentic stories of inclusion in action.
This episode was co-produced and engineered by Subframe Sound with music courtesy of Nealle DiPaolo. This season is made possible thanks to generous support from the Fred J. Brunner Foundation, Bernstein, The Boutelle Family, Horton, Liventus INC, United Healthcare and members of the Aspire community.
Clare Killy 00:02
Welcome to Amplify Inclusion. I’m Clare from the nonprofit Aspire. Thanks for joining us for stories and conversation about disability inclusion. Today I’m joined by Emily Voorde, founder and CEO of INTO Strategies. Emily formerly served in the White House Office of Public Engagement as the Administration’s liaison to disabled Americans and K to 12 educators. Currently, she serves as a presidentially-appointed member of the National Council on Disability. Emily and I spoke this July in honor of Disability Pride Month, and the 33rd anniversary of the Americans with Disabilities Act. Here’s our conversation. Emily, I appreciate you taking the time to be here.
Emily Voorde 00:48
Thank you, Clare. It’s really, really good to be here, too. Thanks for having me on.
Clare Killy 00:52
So Emily, if you can please just start us off by sharing a brief image description of yourself. And then you can move right into sharing a bit more about who you are and letting us know why disability inclusion is so important to you.
Emily Voorde 01:05
Yeah, great. So, again, my name is Emily Voorde, I use she/her pronouns. I am a white woman with shoulder length hair, today wearing a kind of a black pullover, and a navy baseball cap. And you can’t see in the frame but I am a manual wheelchair user. I come from a background in education. So I’m a former K-12. teacher, taught second grade in coastal Mississippi. Absolutely loved it, but felt like I had more questions than answers about the inequities that I was facing and how how to best support my students from a systemic level. And so I went on and studied education policy at Vanderbilt in Nashville, and I was getting ready to graduate from my program and my mayor of my hometown, South Bend, Indiana, called me up and said, ‘Hey, I’m thinking about running for president.’ That mayor was Pete Buttigieg our now Secretary of Transportation, but at the time, he was my hometown Mayor. First ran for mayor when I was in
high school, and you know, had had a chance to volunteer on his campaigns and intern in his mayoral office. But here, he was getting ready to spring up this exploratory committee. And his, you know, eventual campaign for the presidency. And I’m you know, so humbled to say, he asked me to come and you know, help get things off the ground. So, jumped at the chance, move back here to South Bend, worked on the campaign for a bit in operations doing essentially travel, booking travel for the mayor and for his team. So it was helping there and then the mayor’s husband, Chasten, Buttigieg, who is an educator himself, and so we had, you know, had connected and bonded over that, during our time teaching and then during our time, getting advanced degrees in education, he was building out a road team of his own, you know, some spouses, (throat clearing) excuse me, are more or less involved on the campaign trail, but Chasten had wanted to be there to support his husband through, you know, active campaigning, traveling the country. So he’s building out his team, he says, ‘Hey, do you want to, you know, hop on the campaign trail with me?’ So the role that I had on the team was called a what you call a Body Woman. So the best comparison I have on Veep, the Vice President has an assistant and he has this big bag, and he has snacks. He has hand sanitizer, he has band aids, he has a little sewing kit, you know, like any everything you might need, you know, to staff, this what you call principal, like the main person that you’re staffing. And he also you know, needs to know, when they’re walking into a room, he’s whispering in the ear of the person like, ‘Okay, this is we’re going to be meeting so and so, they come from this place. This is why we’re talking to them’ like kind of being prepared to get from place to place and everything else. So early on, even when I joined the campaign, and I was working in travel operations, I had been approached by a handful of folks in the disabled community, who, you know, reached out to me on Twitter or texted me and said, you know, ‘thank you for doing this’. This is not typical. There aren’t a lot of visibly disabled, you know, users of medical equipment that are actively on campaigns, not for lack of interest or passion, but because they there’s a lot of ableism in politics. It’s not an always, you know, a very accessible, inclusive environment. And when I joined the campaign trail in this role supporting Chasten there at never been, to my knowledge, at least on the presidential level, a person with a visible disability, traveling the campaign trail, staffing a principal. But such a surreal experience that I think some days I still haven’t fully processed to be able to reflect on my own experience. And it’s how it served as a role model, paving trails literally for others to do the same. The campaign ended. I was unemployed there for a big stretch of time just trying to figure out what was next. And what would be safe to do. You know, in this early phase of the pandemic. My alma mater, again, Notre Dame, which is based here in South Bend, was bringing students back to campus for the fall semester of 2020. And was there in the office of center, the Center for Student Support and Care, the Sarah Bae Center. Then was called up by a few mentors of mine, who had worked in the Obama administration and nuclear had been there every step of the way to support me personally, while I was working on the campaign, and they said, you know, ‘hey, what would you think about working in the White House?”, you know, they said, there is something called the White House Office of Public Engagement that helps to serve as a front door to the White House for the American people and we think you’d be great as a liaison to Americans with disabilities. And it still is absolutely surreal. But eventually was brought on, hired in May of 2021. So I was worked remotely for the White House for a few years, ended up moving to DC, lived there for a little over a year working in this role, day in and day out, going into the Eisenhower Executive building right there on the White House campus. There was a lot of highs and lows of the role. But at the end of the day, I was just ready to get back home to be around family here in South Bend, to carve out the space to take care of myself, my own physical health, my mental health, and it felt like the right time to do so so. And still have the opportunity to serve on behalf of the President on the National Council disability, which came later, but was a wonderful tenant
compromise, allowed me to still do this incredible work helping to inform the President and Congress about issues impacting disabled Americans, and what we can be doing to better serve our community. But it also allows me the personal, the professional, the social space to create my own path as well.
Clare Killy 07:49
Wow, I’m really struck by how much change for you in really a very short period of time, in thinking about sort of that identity shift from educator to in the White House, to condense it significantly. I’m just wondering about the weight you might have felt, when there’s sort of this…others saying in the back of your head, how important that representation piece is. How did that play into your decision to go into the White House?
Emily Voorde 08:20
That’s a great question. So, I think part of it rests in, a big part of it rests in my own self identification with my disability. So I told you, I’m a wheelchair user, I have Osteogenesis Imperfecta, which is a condition that causes my bones to break relatively easily. This condition was one that I was diagnosed with in utero. So I’ve always been what I sometimes call like, lowercase ‘d’ disabled, I was born with this diagnosis. It has always been a part of me, I’ve always had a disability. It wasn’t until early adulthood like college, and my early professional career, that I really started to see myself as having a disability capital ‘D’. And this isn’t a perfect analogy, but it’s, you know, really starting to understand myself as part of a larger community. But having the chance to serve as the President’s liaison to disabled Americans, was not something that I took lightly. I very much felt that if it was a role that I was going to take up, I wanted to be sure that one, I was doing it for the right reasons, that I felt confident in my ability to reach this community in it’s infinitely faceted ways. And not perfectly, of course, but to the best of my ability, and that I was going in with as firm a sense of possible of my own Identity and understanding that I am part of this community but that I, of course, don’t know every facet of it. And how can I be entering not with, you know, a chip on my shoulder, but instead with a learner’s mentality, and that a little bit goes back to that like that, you know, as an educator, how am I going to constantly be improving my craft and my ability to communicate with our community, with my ability to learn and understand new pieces of our community. Disability is unique in that it is the only identity that can impact anyone at any stage of their life, for any amount of time. So right, you might have kind of a short term disability, it might be something you were born with, it might be diagnosed in utero, but it might also impact you in your senior years. And both right. It can be very visible. There’s no room that I roll into, that someone doesn’t connect the dots and deduce that I have a disability. It can be invisible and some carry both right. I navigate anxiety, that is an invisible disability that I have, that isn’t as apparent. But it’s everything from chronic illness to learning disabilities, to developmental disabilities, to blindness to those who are deaf and hard of hearing. To those who are navigating cancer diagnosis or asthma or respiratory illness or like, it’s hard to even start naming them because it’s – the list will truly go on and on and on. And I don’t think that by any means dilutes our identity or, you know, makes us too heterogenus. But I think instead, there’s such strength in understanding disability is not just that one person that, you know, that looks disabled, right? That like uses a mobility device or fits what our like stereotype of disability is, but instead it is truly this one in four Americans who can be at any stage in their life, come from any background, any socio economic status, any race, any ethnicity, any religion, any sexual orientation that can be navigating this, either for newly or for their entire life. So to get back to answer your question, I wanted to be sure that I was entering this knowing I wasn’t just doing it for people that looked like me or had the same privilege in life experiences I did. But I was doing
this as best as I could. For every disabled American, trying to reach every disabled American, not just the ones that voted for President Biden either, right? It’s being they’re showing up for people who might disagree with what the President is doing or has done, but knowing that they deserve to find community and feel representation in, you know, this highest office in the land as well.
Clare Killy 13:00
So, Emily, you mentioned specifically that capital ‘D’, how that shift makes a big difference in the way we’re thinking about disability, when we can sort of reframe the impairment idea or the medical model idea right into this identity concept. So I’m wondering if you could talk a little bit more about specifically what that means to you, capital ‘D’ disability? And then also, why is it so important as a society for us to be making that collective shift?
Emily Voorde 13:32
Yeah, so I am so grateful, I feel so privileged to have had parents that weren’t going to let my disability stop me. Not because they refused to acknowledge it… that simply wasn’t possible with the amount of medical attention and care that I needed. But, but instead, what I mean to
say is, where there was going to be a will there was going to be a way, and they wanted me to have every experience possible. And they wanted me to, within reason, take risks and sometimes make mistakes in the same way that my non-disabled peers were. I really grew up strong and self-confident and very self-aware in my diagnosis, in my body. But didn’t grow up with a lot of disabled representation, I would say or what I saw as disabled representation. But this is pre-social media, so I’ve not seeing you know, other kids in in chairs, which was, again, my schema for disability. Online, you know, representation of disability in the media. We’ve made great strides in that even in the past 20 years. I didn’t know yet that, you know, my diagnosis was part of this larger community and this larger kind of panoply of what disability can look like. So it wasn’t until I went to college, like I said, just in studying and learning and then meeting different people that it’s like…I’m not just disabled during those moments when I have an injury, and I feel like I’m sidelined for a bit, right, I need to take…I bring my disabled identity in every space that I enter in everything that I do. And my greatest frustrations, during those moments of injury are in part tied to my body, right and my, like lowercase ‘d’ diagnosis, but are also indicative of, yeah, I’m really frustrated, because the world is built around ableism. And they, you know, they, I am only feeling this with greater weight, because our world is built upon the assumption, that productivity, that fun, that independence are contingent upon your ability and not your, your, the, you know, these moments of disability. So all to say, it’s, I, you know, started transitioning into what we what we understand is this social model of like, it is, I am not the problem, my body is not the problem. It is, you know, this ableism that we are born into that we understand as being the problem. This, like internalized ableism that we all hold is us with disabilities, and also coupled with the ways in which the world is not built for us, like those are our greatest points of frustration. And that is not because of my inadequacy, or something that needs to be fixed in me, but instead, something that I just have to navigate in my day to day life that all of us do, as, as people with disabilities.
Clare Killy 16:49
I want to talk a little bit about the disclosure piece, because you brought up something interesting having those both the visible disability experience and invisible disability experience. And I think there’s increasing conversation for the better about these experiences and the importance of naming needs and self-advocating in the workplace specifically. What’s your approach to or philosophy of self-disclosure for yourself? Let’s start there.
Emily Voorde 17:20
Yes, so as I mentioned, I am very visibly disabled. I use a chair, I roll into a room, and people make assumptions good and bad about what my needs are. And there’s some amount of privilege in that, right. So for example, they don’t question that I have a disability. I’m rarely asked when asking for accommodation, per my physical diagnosis for documentation or for proof. Because everyone’s like, well, she uses a wheelchair, of course, she’s disabled, right. But on the flip side of that, people assume what I can’t do based on my disability, so there’s assumptions that people have about my inabilities. So there’s the good and bad that come with that, for better or for worse, I don’t have the option to not disclose my physical disability when I’m entering a space, right, I can in the virtual environment to certain extent, etc. My anxiety, on the other hand, I have to opt in, I have to self-disclose. And that not only is that a more recent, something I’m navigating more recently, so you know, is still more relatively new to me. But it’s also something I haven’t fully figured out. My belief is that I choose to self-identify as having this invisible disability as having this mental health diagnosis of anxiety in two scenarios, one, when I know that it will benefit someone else. So that’s a little bit about what you’re talking about this normalization, like, let’s talk about this, let’s normalize, I might appear bubbly and happy and happy, go lucky on the outside, but like, let’s be vulnerable. And let’s talk about how this is something that I navigate and that this is real. And maybe you will feel more comfortable in your own skin, as somebody I know is also navigating either a new diagnosis or what they think might be, you know, exploring what might be a diagnosis. The other instance in which I choose to self-disclose is in instances of accommodation. There is a lot of accommodation that can be gained by having the vulnerability to say, I need help, right? And doing that in a safe space and knowing that that information will be guarded. And that can be tough too because sometimes the process how information is stored and shared is not always transparent, but doing what I can to explore what that process looks like, who will be keepers of that information, when and how it will be shared with managers or with teammates, right? But knowing that like if it if disclosing means that I can get the space that I need if and when I need it to take time for myself, then that is that is of importance to me personally. My philosophy writ large is that, in a perfect world, we would all feel comfortable self-disclosing our disabilities. And I hope every day that we move towards that, being vulnerable with one another, and finding that commonality of community. Me going into a room and seeing there might not be another person with a that uses a chair, but there’s somebody that’s navigating Crohn’s here, there’s somebody that has dyslexia, there’s somebody that was recently diagnosed with autism, there’s somebody with a cancer diagnosis, right, and being able to find commonality in that overlap of the Venn diagram and our shared experience as people who are disabled. But I also know that we don’t live in a perfect world. And that ableism that we face, that potential for kids in school, face higher risk of bullying, when they self-disclose their disability. In the workplace, there is potential for, not legal retribution, you’re protected from retribution. But you know, there’s concern about the responsibility, the room for advancement, the peer effects that will be had by disclosing your disability. And that’s the societal internalized ableism, right, that’s this understanding of disability as a negative, as something that needs to be fixed, as something that makes us you know, physically or mentally weaker. And that’s not the case. But until we normalize disability, it’s going to be harder for people to kind of come out into that identity.
Clare Killy 21:55
What have you seen to be effective in inviting disclosure, like, in really creating a culture that invites disclosure? What are the things we can do or that folks are doing well to create those spaces where people can open up that maybe haven’t done that before?
Emily Voorde 22:12
Yeah. I think two things, one, being really transparent about process. And I’m thinking more from like a corporate or organizational standpoint, or universities, you know, colleges and universities as well, right? Being really transparent about process. So, this is the information that I’ll need from you. This is where it’ll be stored, this is how it’ll be protected. So allowing them to feel safe and ask questions about how their information will be shared. Secondly, I think, and you can do this, this can be done in any space, in higher ed in, again, kind of like corporate organizational structures, in friend groups and community spaces, whatever it may be. It’s just creating that culture. And saying, I am here, I am disabled, let’s talk about it and celebrate it and affirm it in this space. So a good example, you know, I see more and more, not only corporations, but campaigns, nonprofit groups, membership organizations that have affinity groups, or employee resource groups – that might have one for disability that says, you know, come one, come on, whether you are a person that identifies as disabled yourself, or somebody that you know, has a loved one or somebody close to you that does. Come and let’s enter into this safe space in which we can talk about it.
Clare Killy 23:34
And it all comes back to like you were saying, building in the systems and the consistency, right, really at the foundation of everything…
Emily Voorde 23:41
Clare Killy 23:42
Thinking about systems is connecting to what’s on my mind right now, which is that we’re in the summer of the 33rd anniversary of the Americans with Disabilities Act. So let’s talk a little bit more about where we are now. So as a wheelchair user, I know that that, you know, physical accessibility piece, and as you’ve talked about, is central to your life and your daily experiences. So what is most important for you to share with people about why that built environment piece is so important to an experience of belonging and inclusion?
Emily Voorde 24:20
Yeah, the ADA is a great foundation. But it is not nearly enough. So particularly over the past couple years, as I’ve come together with community members to celebrate all that the ADA spring boarded, it’s also an opportunity to talk about how it is not enforced, how it is a bare minimum. It’s a great roadmap, but I don’t think it nearly encapsulates the gravity of how failure to meet the requirements of the ADA, even in their most basic forms, really segregates, has the potential to segregate, an entire swath of the population. You know, fails to allow people with disabilities, in whatever form they may take, to access otherwise publicly available spaces. So why is physical accessibility so important? There’s not a day that goes by that I do not encounter a space that is not welcoming to me. That I can physically not access. And for those who haven’t experienced that, I don’t know that there is quite an equivalent. You are going about your day and you stumble upon a coffee shop, and you just want to get a cup of coffee. And maybe you’re with, you know, other non-wheelchair using peers, maybe you’re alone, whatever it may be. But there are two steps to get in the door. And absolutely nobody thought about the fact that somebody that looked like you, that used a wheelchair might want to get a cup of coffee. That’s kind of a mundane example, right? But then it just escalates from there. The very first time that I went to vote, I was a newly minted 18 year-old and..wild enough, Pete
Buttigieg was on the ballot for the first time running for mayor and I was amped to go vote. I come from a family of, you know, I would go with my dad, and with my grandma and with my mom to vote every year. My grandmother who passed away at 96, had never missed a vote,
you know, municipal to presidential. Like it was, it was a big deal in our family. So, so excited to go vote after school in this first election. And I get to the polling place, which is just a community space down the street from my house, and there are stairs to get in. And there’s already like, right, there’s already a moment of privilege and access, because thankfully, my dad was with me. He was able to go in and say, ‘hey, there are stairs, where can we…’ Well, it turns out there is an accessible entrance, a ramped entrance around the side of the building. But nobody has a key for it. And oh, there’s a yet another that would have been on the around the other way. But once you get inside that door, there are three steps up to the main area where the polling booths are. So in that moment, my constitutional right to vote is being impeded by lack of physical access in the built environment. So in that moment, I have a choice whether to dig my heel in and say, you’ve got to find a way to make this work. Or, in my case, I’m able, and I am cognizant in every space that I tell this story, that there is privilege in this, there’s physical privilege in my body being able to do this…but I was able to get out of my chair, scoot my little butt up those stairs of that polling place. And, you know, I had my dad and somebody that was there helped carry my chair. Because I was gonna get in there no matter what. But I did that, because I was not going to let my ability to select my elected officials be taken, you know, stripped from me, because somebody hadn’t thought that there might be somebody in a chair who would come and vote. And that is just one example. And there are countless, for not only chair users, but anybody who needs access in the built environment. And to constantly be faced with situations big and small in which you are told, we didn’t just we didn’t think about you. Or we thought about you and it was too expensive to create a space in which you can enter. That wears on you. And there’s a like a vulnerability fatigue, I’ve heard that phrase used by people who are just told time and time again, that they are not important enough, they are not worthy enough, they’re not part of the majority enough to be included in this space. So to answer your question, every year, during July, in particular, you know, during Disability Pride Month, and as we approach the anniversary of the ADA…I think about how important it is to go above and beyond in the creation of spaces, both physical and virtual, to ensure that we’re doing what we can to be inclusive of all shapes, sizes, modalities of disability. To make sure that every single person can have as close to the same experience as possible, something we call universal design. That we are designing spaces and experiences to not just be affirming or accessible to the majority, but that every single person is able to participate.
Clare Killy 29:52
What have you seen in your, you know, field of work specifically, whether it’s in political campaigns or otherwise…What have you seen to be an impactful way to increase representation and what result does that have?
Emily Voorde 30:07
Yeah, most definitely. So I think, right, a lot of excuses are made about the lack of disabled talent for roles, whether they be on campaigns or just general in the workforce. Saying like, well, nobody that was, you know, self-identified as disabled, approached us for this role. Or we haven’t had any applicants from the neurodivergent community or…And, in those moments, taking a chance to step back…I am no HR, professional or expert, but taking a chance to step back and say, ‘Well, what are we doing to meet this community where they are?’ And to create a safe space in which somebody that is navigating this identity feels supported and affirmed by the work of this organization, or this campaign, or this company, or whatever it may be. So, for
example, I was aware of an organization that was hiring for roles. I was part of a group in which they were talking about, we’d really love to hire more experts with disabilities, they have this unique perspective, and we want to be sure that we’re living our values, etc., etc. And just in conversation kind of over, you know, over dinner within this group, we’re talking about, well, what is the what is your application process? What does this look like? And aspects of the application process would not have been accessible to somebody with a disability. It was like, no wonder you’re not getting any applicants from people that are self-disclosing, like you haven’t even made the pipeline, you haven’t even made the process accessible to them. And then also just tapping in to the incredible pipelines of disabled talent that exist. So just playing an active role in seeking out that disabled talent, and not just sitting back and expecting people to come to you and to make that leap, particularly if you have not indicated that you are kind of a safe place to land.
Clare Killy 32:06
So what else can we all do? What are your calls to the community, Emily, if you were to speak directly to individuals that want to be a part of the solution?
Emily Voorde 32:16
Yeah, great question. I would say – lean on disabled experts. Pay them for their pay them for their expertise. You know, don’t just go to the one token disabled person in your organization or on your team and say, hey, what can we be doing, but pay disabled people for their expertise. And do the work of understanding disability language that is affirming the history of the disability rights movement. Do that work on your own, whether you are a person with a disability, or someone that is non-disabled. Explore and learn and have a curiosity about the history of our community, because there’s empowerment in that, as is the case with many different differences. If one doesn’t have the language to talk about disability, they’re either one – gonna put their foot in their mouth and cause harm, whether intentionally or not, or two – just opt out of conversations about disability and about that difference, because they don’t have the language in which to thoughtfully engage. We see that in conversations about race, about sexual orientation, about religion, if you don’t have the language, you might just choose to opt out and, you know, that can be ultimately harmful to yourself and your own journey as well as you know, further kind of pushing disability into a corner, kind of further othering disability. So take it upon yourself to read to watch. Immerse yourself in that culture, and in that understanding of disability in all of its forms. And I can guarantee again, whether this is your first exposure, or your 700th that you’ll leave, feeling more empowered to use the language of disability and to seek out experiences where you encounter disability more. Again, not only in its kind of stereotypical forms, and it’s very visible forms, but in all of the forms that it takes, because it’s all, it’s all around us.
Clare Killy 34:23
Looking back, on Emily the teacher, early in your career, what would you say to buckle up for?
Emily Voorde 34:25
Oh my gosh. Um…To Emily, the teacher, I think I would say – you feel very alone right now because you have entered yet another space in which you are most often the only person in the room that looks like you, but that you are not alone. You aren’t in that moment in the small classroom in coastal Mississippi. You’re not when you get to the White House in seven years. You are surrounded by a community near and far that might not look like you, might not have
the same experience. But it’s feeling those overwhelming joys and sometimes that overwhelming grief and sadness of disability, and you are not alone in that.
Clare Killy 35:21
Thank you to my guest Emily Voorde. Check out the links in the episode description to learn more about Emily and INTO Strategies. This conversation marks the 30th episode of Amplify Inclusion! Thank you for your support and for helping us to share powerful perspectives on disability inclusion. Stay connected with us at AspireChicago.com and please rate, review and subscribe to Amplify Inclusion. This episode was co-produced and engineered by Subframe Sound. This season is made possible thanks to generous support from the Fred J. Brunner Foundation, Bernstein, The Boutelle Family, Horton, Liventus INC, United Healthcare and members of the Aspire community.
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