S5. Ep. 1
Emily Blum

Welcome to Amplify Inclusion, a podcast where we share authentic stories of inclusion in action.

Emily Blum, Executive Director of Disability Lead, discusses the transformative power of diverse leadership and reflects on the Americans with Disabilities Act. Listen now or view the full transcript below. 

Related Resources: Disability Lead | Emily’s Op-Ed in the Chicago Sun Times

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, Enterprise Fleet Management, First Bank Chicago and members of the Aspire community.

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Full Transcript

Clare 00:03 

Welcome to Amplify Inclusion. I’m Clare from the nonprofit Aspire. Thanks for joining us for  stories and conversation about disability inclusion. Today as we kick off our fifth season, we’re  also approaching the 32nd anniversary of the passing of the Americans with Disabilities Act.  The ADA is a civil rights law that was passed in 1990 and prohibits discrimination on the basis  of disability. My guest today is Emily Blum, Executive Director of Disability lead a Chicagoland  nonprofit rooted in the spirit of the ADA. Since 2019, Emily has led the organization’s efforts to  develop and build a network of leaders with disabilities in the Chicago region. I had a chance to  speak with Emily to discuss the transformative power of diverse leadership and her reflections  on the ADA. Here’s our conversation. Emily, I’m really glad to have you with me today. It’s really  great to see you. 

Emily Blum 01:02 

I’m so glad to be here. I’ve been looking forward to this conversation for a while. 

Clare 01:05 

Yes, very much so. And Emily, you and I have had the chance to connect in lots of different  ways. Had the honor of doing a lot of different work together through Aspire, through Disability  Lead. I’m also a fellow with Disability Lead Institute this year, so got a chance to know you in a  whole new way. It’s really exciting that we’re here today. 

Emily Blum 01:24 

Yeah, right back at you. And you know, so grateful for your involvement in the organization. And  you know, just your work as a disabled leader yourself.

Clare 01:32 

Thank you, Emily, appreciate that. So let’s start just by getting a little background on your story.  So I know that you have quite an accomplished career journey. And it sort of intersects with  your personal journey, as well, as a person with a disability. So I’m hoping we can talk a little bit  about your journey.  

Emily Blum 01:51 

Sure. I’ll start with the personal because I was really born with my disability. So I have dystonia.  It’s a movement disorder, basically, there’s some sort of imbalance in the part of my brain that is  responsible for unconscious movement. And for me, that primarily impacts my gait, and how I  walk. And so, as a kid, kind of trying to figure out the world in which I existed, you know, not  being able to move, like my classmates, or members of my family, I started thinking about, like,  who am I, and it took me a long time to kind of recognize that I am a person with a disability.  And I think it was through the work that I did that helped me really understand how important it  is to align, like the personal with the professional. So I always knew, I think, that I wanted to do  something related to public interest or doing good, right. So right after I graduated from college,  I moved to Washington, DC, and I worked in politics. I’m from Chicago, I knew Chicago would  eventually be home. And so when I left DC, I ended up working for this an incredible woman  leader, who had a small PR boutique firm that really only focused on on nonprofit clients. And it  got me exposed to it interested in the nonprofit field. And I just built a career doing marketing  communications for a variety of organizations- arts and culture, urban planning, poverty  alleviation. And you know, I think what I learned at each of these different experiences is that  Chicago is an amazing city, but it’s not equitable for everybody. And I’ve had unbelievable  opportunities, but not everybody in our city is afforded the same kinds of opportunities. And so  what is my role in that? What is my responsibility to change that? Is something that I think I’ve  always centered. And so actually, my organization, Disability Lead, was formerly ADA25  Advancing Leadership. I heard about the Fellows Program that Claire you’re involved in, and I  applied to be a part of it when I was at my previous position. And it was just this incredible  moment, walking into a space. Everybody was different, right, there- nobody else had dystonia  like me, but we all identified as having a disability. And, yes, I recognize that I had a disability.  I’m not sure how much I really carried that pride of disabled with me at the time. Certainly that  has grown. But at the time, I was like, Yeah, I have a disability. And I’m curious in leadership,  and I have this vision of myself and helping to advance equity in our city. And I’m also curious  about how these things intersect. And so I became a fellow and was just so incredibly moved by  the similarities that we all had. I use this analogy a lot, but it was just amazing to be in a space  where, you know, my whole life, I thought, my song was my song. And I walked into this space  and everybody was singing it. And it was just was a really incredible, powerful moment for me.  And so when the opportunity to become executive director opened up I knew in my heart that  like, this was the position for me. And so I applied and was just- and continue to be incredibly  grateful to be in this role.

Clare 05:10 

I have heard use that analogy and it never gets old. I love it. It’s such a powerful way to frame  that connection that was always there. But you didn’t know was there.  

Clare 05:19 

Yeah, yeah. And I think like that idea of community is so incredibly important. And I’ve heard  that from a lot of disabled leaders who I know and respect, is that like, finding that community is  just critical. 

Clare 05:33 

Yeah, it’s interesting, because it’s making me think about, if you don’t mind me sharing a  personal reflection, yeah, just that, you know, my realization that one of my biggest fears of like,  owning my identity was being essentially rejected from the disability community for feeling like  I’m not disabled enough, right? Quote unquote.  

Emily Blum 05:53 

That’s right, yeah.  

Clare 05:53 

And it really aligns with what you’re saying that, in fact, it’s one of the most welcoming  communities. I’ve been met with nothing but just support and kindness from so many people. So  it’s really interesting. 

Emily Blum 06:09 

Absolutely. And I think it’s partly because, you know, we all carry assumption and ideas, good  and bad about disability, right? Like, we kind of have this image of a person in a wheelchair, and  that’s what disabled is, but like, the reality is, is that it’s just so varied and rich and diverse. You  know, I think it’s one, this idea that, like “I am not disabled enough,” it’s also, I don’t know if  you’ve experienced this, Clare, but I also had a fear that like, well, I know my experience really  well. And how am I supposed to be an activist or an advocate for your experience? I don’t know  anything about your experience, right? But, that’s what’s so incredible about being part of a  network is that we do not, you know, like, the expectation is not to be experts in what it’s like to  be blind or deaf, or have a cognitive disability, but like, how do we carry in our hearts, other  people’s experiences, so that we can speak on their behalf, or makes really make space for  them to speak on their behalf? 

Clare 07:07 

Yeah. It’s also interesting that when you’re talking about the inception of Disability Lead, I’m  hoping you can talk a little bit more about sort of where it all began. Because, as we’re thinking 

about the anniversary of the Americans with Disabilities Act, this is the 32nd anniversary, that  really is a big piece of the history of Disability Lead. So talk about that. 

Emily Blum 07:28 

Absolutely. So we are actually founded during the 25th anniversary of the Americans with  Disabilities Act, and our previous name was ADA25 Advancing Leadership. We were actually  founded as a program of the Chicago Community Trust during this 25th anniversary, primarily  because the work of ADA25 Chicago was a region-wide celebration of the legislation of the  anniversary of the ADA. And they were convening all these organizations and nonprofits around  the region to hold events and conversations around disability and there wasn’t enough people  with disabilities and leadership positions in these organizations. And we were created then to  build that bench, out of this recognition that there just weren’t simply enough people with  disabilities in leadership roles. So we were kind of born out of this moment, and continue to  grow in this moment of just continued recognition that diversity yields better results, it yields a  better culture. And so we continue to be tapped to help support those organizational goals. Our  programs are really centered at the heart of our work, which is our connections work, which is  we connect our members to opportunities, either civic positions, or professional advancement.  And we do that because we have this Fellows program that you’re a part of. And we also have  our rich network, which is now more than two hundred people with disabilities in the Chicago  region who are all wanting to actively are leading with their disability identity in a civic space.  Our program is around connecting leaders to opportunities, yet, our opportunity is really to  change the culture and the narrative around disability. You know, whether you’re disabled or  not, we’ve all experienced or heard the stigma- disability is a bad word. And our opportunities to  really shift that narrative and say, it is not a bad word is not a bad thing. It is simply a lived  experience. That is an important perspective. You know, and I think as that continues to work,  that narrative shift continues to work, then more and more people will be attracted to say, hey, I  am a person with a disability. I have a lived experience. And I have ideas that are important that  will continue to, you know, advance goals around equity and inclusion. And I have something to  say. 

Clare 09:57 

Yeah, and it’s really about representation right? Which I think is such an important part of the  conversation in general, when we’re thinking about diversity, equity inclusion for all marginalized  groups. What kind of impact does that really have when we see leaders with disabilities? 

Emily Blum 10:13 

Yeah, I think when you have leaders with disabilities today and add, you know, decision making  tables, that is culture change, right? It is signaling that, yes, they are leaders and their ideas,  and their work is important. But it also signals to the rest of the organization that that is valued.  So if you are a coordinator or administrator or a junior position in an organization, and you see  somebody in the C suite, or the directors level, who has a disability, and who is open about it  and talks about it, that makes me feel comfortable and sharing my experiences as well. You  know, each of us, I believe, wants and deserves the opportunity to show up fully, wholly as 

themselves, in whatever space they want to do that in, whether that’s work, at home, in their  family, in their church, or in their volunteer capacity. And I think for a long time, people with  disabilities have either received signals or told themselves things that they need to keep it quiet.  But there’s so much power in sharing those ideas and sharing those experiences. And when  that comes from leadership spaces, when that comes from decision making spaces. Like there’s  such incredible ripple effect. You know, I hear from a lot of organizations who are working on,  you know, diversity, equity and inclusion. And they have a desire to be inclusive, more inclusive  of disability. And you’ll hear leaders say things like, well, we just don’t have any people with  disabilities in our organization. And it’s like, yeah, of course you do. Of course you do. You just  haven’t made your environment welcoming enough for them to be open about it in that way. And  you’re really missing out as a result of it.  

Clare 12:00 

Yeah, it’s an important way to phrase it. Of course there are it’s thinking about, is it a safe  space? Is it a place where that conversations being invited?  

Emily Blum 12:08 

That’s right. That’s right.  

Clare 12:10 

So let’s shift gears a little bit back to the Americans with Disabilities Act, the ADA, because I  think it’s really important anytime we are around the annual celebration that we’re thinking  about, of course, the tremendous sacrifices and the progress that was made because of those  sacrifices. But we it’s also a time to bring some pause and think about where we still need to  improve and where there’s still room to grow and advance disability inclusion. So I’m hoping we  can talk a little bit about where there’s still opportunity. So what is the ADA do and what doesn’t  it do? 

Emily Blum 12:47 

Our elders, our disabled elders who fought for the Americans with Disabilities Act made  incredible strides for our community to have the protections we need, we have the rights to be in  restaurants and theaters, we have the right to education, we have the right to, you know, be  treated fairly on the job. So those are some incredible advancements that the ADA has made,  which doesn’t mean that discrimination doesn’t happen, right? You can’t call the ADA police.  There’s no ADA jail. So like everything to advance is litigated in the courts, which has its own  set of challenges. What the ADA doesn’t do, which I think a lot about, and I think that this is why  culture change is so critical, is ADA does not mandate employment. It does not mandate  advancement. It does not, you know, mandate, salary increases. Those are the things that I  think a lot about, and in my role as an organization that’s building disability leadership. And  that’s really a huge challenge.

Clare 13:55 

So I wanted to point to the op ed that you recently published in the Chicago Sun Times, and in  there you sort of pointed to your personal experience, but also how the pandemic specifically  has really exacerbated disparities, specifically for people with disabilities. So my first question  really is, you know, what was the moment when you decided you wanted to write that? 

Emily Blum 14:18 

Yeah, I mean, it was- it was interesting, because it was actually a hard personal moment. So let  me just say that 16 years ago, I underwent a brain surgery to help control some of the  symptoms of my dystonia. And the surgery had really incredible outcomes. I was able to move  and walk in ways that I hadn’t ever been able to move before. But in the last two years, some of  those benefits had really dropped off. And I was on this road to try to figure out what to do. And  it was a job on top of my job on top of my life, and I was actually in a hotel room in Minnesota, I  had traveled to the University of Minnesota because you know, one of the best dystonia, doc’s  was located there, and I went for like, five days, four days of like different tests, appointments,  scans, X rays, like all the things that like I felt I had to do to get answers. And I was in my room,  and I just was so frustrated about the unacknowledged labor that we as disabled people spend.  And so that’s really where the idea was sparked. And so, you know, my experience is both  incredibly unique to me, this hard work of being disabled, but I also know that it is universal. We  juggle doctor’s appointments, we juggle work deadlines, we juggle family deadlines, we figure  out ways to get from point A to point B, we clean our homes, like there’s so much work involved  in daily day-to-day lives, that is only compounded when you have some kind of disability. And I  just wanted to honestly, I just wanted to honor that. Like, I wanted to honor that in myself. And I  wanted to honor that and other people, because I don’t think that that is necessarily  acknowledged, partly because of the world we live in, but also partly because of ourselves. 

Clare 16:19 

Yeah, and thank you for doing it. I was thinking back to some things you said earlier, because I  wanted to talk a little bit more about some of the opportunities for change. And I know you’ve  already talked about some really important pieces, thinking about shifting the narrative and the  culture, and also thinking about representation. So I just wondered if there’s anything that we  haven’t talked about that you’d like to add that you would classify as a really great opportunity  for us to advance this issue? 

Emily Blum 16:47 

So a couple of things coming to mind. If you are a person with a disability, and you live in the  Chicago region, Disability Lead wants to know you, we would love to make space for you, in our  network or in our upcoming Fellows Program. If you identify as an ally, I think that there are  some incredible ways to be an ally. Number one, in your workspaces in your volunteer spaces,  ask the questions, who’s sitting at decision making tables? Are there people with disabilities  there? And how do we make our work and our culture more accommodating for them? I think  that a lot of people come to conversations like that feeling bad. Like, maybe they know the 

answer to that question. Okay, there aren’t any people at leadership table. Okay, we haven’t  made our work very accessible. And I think that there’s a real feeling of like, inadequacy, or, you  know, just feeling bad and don’t- it’s okay, it’s okay to not be perfect. I’m not a perfect person.  We’re not a perfect organization. We’re not a perfect community. And I think that that kind of like  fear of saying the wrong thing, of hurting people’s feelings, oftentimes stands in the way of  progress. So my next piece of advice is get over yourself. There’s always room for growth, and  we welcome that growth, and want to be partners with you alongside that work. I think the third  thing is, is look at your personal life. are you consuming culture that’s inclusive of disability?  Movies, books. Do your children know disabled people? Do you know disabled people? And  that is just, I think, an incredible opportunity, right? When we’re thinking about all things related  to diversity, whether that is related to race, ethnicity, gender, gender identity, and then of  course, disability, like how do we incorporate that into our own, like personal lives? So who are  the authors that you’re consuming, and the movies that you’re consuming, and any kind of  aspect of culture that you can incorporate related to disability I highly recommend.  

Clare 18:56 

Those are really great calls to action. Thank you. And I think it’s so important that you included  that balance of- here’s how I apply this lens in my professional space. And I have to be looking  at it personally, as well. And the role I play in my community, because it’s so- it’s intertwined.  

Emily Blum 19:13 

Yeah, because we’re whole people, and it can’t be separate. It has to be holistic.  

Clare 19:18 

Yeah. I appreciate you mentioning, inviting people to safely acknowledge that they can get it  better. You know, that an organization can do better, that a community can do better, that a  person can do better, right? Because, I think part of it is, if we want to make those changes, we  have to invite people in to do that and to be vulnerable in a place where it’s not critical and full of  judgment, but it’s, you know, welcoming of making personal change. That’s something that I  really appreciate about Disability Lead, and you and the team there is that you’re all incredibly  authentic and vulnerable, yourselves, and I think that really invites people to take that out in the  community. 

Emily Blum 20:00 

I mean, I have to say it’s very conscious, especially leading an organization as a white woman  that I feel really strongly about in moments where I can acknowledge my privilege, I do. In  moments where I don’t need to be the voice, I’m not. I learned so much every day from just our  incredible diverse leadership of our members and their own lived experiences and perspectives.  And I think we all have responsibility in making room and space for really everyone.

Clare 20:37 

Thank you to my guest, Emily Blum. Join us next time for my conversation with Illinois State  Senator Robert Peters. Until then, stay connected with us at aspirechicago.com and be a part of  the inclusive movement by rating and subscribing 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, Enterprise Fleet Management, First  Bank Chicago, and members of the Aspire community.