January 18, 2022
Amplify Inclusion Podcast
Welcome to Amplify Inclusion, a podcast where we share authentic stories of inclusion in action.
Whitney Hill, Founder and Director of SPORK!, shares her personal journey and her passion for building community through storytelling. Listen now or view the full transcript below.
Whitney’s suggested resources: LCM Architects | Disability Lead | 3Arts
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 and members of the Aspire community.
Welcome to Amplify Inclusion. I’m Clare from the nonprofit, Aspire. Thanks for joining us for stories and conversation about disability inclusion. This episode marks the launch of our fourth season featuring more interviews with leaders, self-advocates, and allies of the disability community. Today, my guest is Whitney Hill, founder and director of SPORK!. Whitney is an accessibility specialist with over a decade of experience in program management and communication. As a person who identifies with a disability, her perspective allows her to connect individuals with needed services, while also empowering them to be self-advocates. Whitney and I spoke about her personal journey and her passion for building community. Here’s our conversation.
Whitney, I’m so excited to have you with me today. Thanks for being here.
Thank you so much, Clare. I’m very happy to be here. I’m very happy to have this conversation.
So specifically, I’m excited to hear more about your website, SPORK!, which you launched back in 2011. But first, I’m wondering if you can talk a little bit more about the work you’re involved in specifically around universal design and public accessibility.
I’m wearing a few different hats. I work at LCM Architects, which is a wonderful architecture firm here in Chicago that deals with Title II and III of the ADA, and I work as an accessibility specialist with them. And then on the side, I am on a number of different boards and advisories. So the first one is the CTA, the Chicago Transit Authority, they have a disability advisory board that meets annually. I’m a member of that, as well as the chair of the Wayfinding subcommittee. For those of you who might not know Wayfinding is, really describes how someone might get from point A to point B in a built environment. So it deals with signage, it deals with nonverbal indicators that might be an environment that helps navigate a person with where they’re going. I’m also a 2020, fellow of Disability Lead, and I’m currently a member, as well. I serve on their program committee. And I am also a new member of Three Arts, a wonderful, wonderful organization here in Chicago that provides grants and support for artists with disabilities, artists of color, women artists. And then lastly, I am also a member of Governor Pritzker’s Blind Services Planning Council. I’m very proud of and very happy to be on all the different boards and advisories that I serve on. I feel like they all help my bigger end goal of just trying to be a better advocate here in the Chicago area for people with disabilities.
Great. Yeah, I think it’s really great to hear how you’re really taking your commitment to inclusion and access and approaching it with a lot of different lenses. And I think that also comes through in SPORK!, your website, because it really is focused on amplifying stories and the voices of people with disabilities. So tell me a little bit more about SPORK!.
Yes, SPORK! came together in 2011, when I was still in college, at the School of the Art Institute of Chicago. Originally, it was an assignment putting together something for the community. It was like very broad terms. And so myself and another classmate we got together, because we realized after shortly talking to each other, that we both had a very strong stance within the disabled community, in particular, those with non-apparent disabilities. And so we quickly kind of came together and we thought about, you know,
this, it’d be great if there was this like magazine publication out there for people with non-apparent disabilities to talk about their lived experiences and to really kind of see on a broader scale that even though a lot of times what you’re going through can feel lonely, that you are actually not alone, that there’s this fantastic, you know, group of people, this community behind you. And, you know, the hardest part of getting help anywhere or just finding a voice anywhere, is you have to find it. You know, it’s something that is sometimes you have to seek and you don’t even know that you need to seek it. You know, so we were just trying to think of a way to like, make a comprehensive, put it together. And so anyway, from there, it quickly kind of rolled into this bigger thing. After we graduated college, I turned it into a nonprofit. SPORK! evolved and became this bigger kind of online platform for people of all disabilities. Currently, we have a wonderful set of guest writers who send in their work. It deals from everything about new diagnoses to wanting to become diagnosed. A large part of our writers, it’s their first time talking about disability in any format, especially in relation to themselves. And so it really is a really tender, nice starting-off point for some people who are trying to have a better understanding of what maybe their condition means to them. And also the freeing part of being able to put that out in the universe, knowing that it’s going to be held and respected and heard from others who might be going through the same thing. So in a nutshell, that you know, that that’s what SPORK! is, you know, we’re just this wonderful online platform for people disabilities to talk about their experiences.
I agree that it’s a really great place to look for a variety of different perspectives. And what I also really like about it is there are different mediums, there’s a combination of different types of content for people to consume in ways that feel useful and meaningful to them. I did want to hear a little bit more about the meaning behind the name.
Yeah, we kept coming across the utensil, the actual utensil, the SPORK!. You know, it is different from all the other utensils, when you see it, you recognize it. But it is a combination of the two best utensils, it is its own unique, beautiful thing. And you know,
we just really resonated with that, because I’m pretty sure most people who are within the disabled community, they can attest that sometimes you feel like this shimura butterfly SPORK!, you know, you are a part of multiple identities, multiple things, but blended into this one unique thing that works just as well as everything else, but just kind of operates in his own fashion. And I think there’s a lot of beauty and wisdom in being different. And I think that sometimes it’s really hard to find that value, yourself, if you’ve been told that there is no value.
So can you share a little bit more about some of the big milestones in your journey, and how you now currently describe your disability identity?
Yeah, I’ll be more than happy to. I, first, you know, want to say that this is I feel like a constantly evolving story. It’s layered. When I originally grew up in Dallas, Texas, born 1989, and when I was born, there were just a series of health complications. It was really clear that I had some issues with my legs, they did all these tests, I guess, because they saw that something was wrong. And they were just trying to figure out like, what it was. And so anyway, as I got older started going into school, it became very clear, I had a very, very, very, very pronounced speech impediment, as well as a very, very pronounced, they call it being pigeon-toed, but really, it’s, it’s called femoral anteversion. So like, it’s just your leg, it’s connected to your hip bone at a slightly different angle. So your legs go in. Every time I went into a room, you know, I just stood out. I had to go through like at least like seven years of speech therapy. Because up until I finally got out of speech therapy, no one could understand what I was saying. My brother, he would translate for me, you know, if I was around him. Even if I was around my parents, my brother was the only one who could decipher the garble of words that were, I guess, coming out of my mouth. And it was just a really difficult time. At one point, the doctors wanted to break my legs and reset them so that I could walk properly, which my parents, they hated, you know, of course. And so it was just like, a lot of rigorous physical therapy after that. And it was just a layer of things. And so it was that, going to a school system that was still very new to the concept of the ADA. I was born in
1989. The ADA wasn’t passed until 1990. You know, I was going into school around 1994. And so for the schools, I was going into the area that I lived in Dallas, not only was I one of the few Black people, but I was also one of the few people at the school that had disabilities that required accommodations, which was once again still kind of
like a new word for, for some of my teachers. And so going through the school district with apparent and non-apparent disabilities was it was like a chess game, you know? To be honest. And it wasn’t until, or years later around, like, what was it, about sixth grade, where the mental health kind of piece everything really started to rear its, you know, head. I was already, I guess, dealing with depression, you know, that’s a word that was not in my vocabulary, and not the vocabulary of my parents. And so it was just kind of seen as like just being sad, you know, just being very emotional. I started having my first suicidal thoughts in sixth grade, and just how the atmosphere was at the time, it was normal to keep that to yourself, if you’re around teachers, faculty, or whatever, who do not know how to perceive that or work through that, you might be expelled from that school and be sent to somewhere else. You know, there’s a lot of risks, or can be a lot of risk, especially back then. And so, with enough time and physical therapy, all of that kind of worked itself out, you know. But then as I got older, it was really that mental health piece that really hung heavy over me for a really long time. And wasn’t until my mid-20s, where I finally really reached the end of my like, personal rope and kind of scope of things, and saw therapists, you know, that was kind of my last ditch effort of kind of trying to regulate what I’ve been feeling and everything else. And to be honest, once I got that diagnosis, and had to really strip away this thinking- and for anyone who has depression, I think they’ll probably understand this- that toxic kind of deep feeling that you feel sometimes when you’re in the middle of your depression, that that is not you, per se, that that is depression, that those are two separate entities. Just learning that was powerful enough to make me keep wanting to invest, because it was kind of like the big puzzle piece to ‘why am I not feeling the way that I’m guessing I should be feeling?’ And when SPORK! came to, it, ironically, became a sounding board and a platform for me to, to also kind of figure out my own journey with my disability. I wish I could go back in time and like, share that like nugget of knowledge of my younger self.
Yeah, well, what if you could Whitney, what do you…what do you think you would say?
To be honest, the main thing that always kind of hits me is when you’re trying to figure out what’s wrong with you, so much time can go into that. Years can go into that, where you’re thinking that it’s all you, like you’re doing something wrong, you’re the problem. I feel like that is time potentially could have spent on being happy. So I feel like if I could have, you know, go back in time, I would just try to share that lesson. Everyone deserves happiness. And that’s been the hardest phrase, I think, for me to accept for myself.
Yeah, but I really appreciate that point of view. And just thinking about the time, the energy, that goes into even eventually othering yourself. And you said something earlier that I thought was really powerful. You said, you know, when you started experiencing depression, that wasn’t a word in your vocabulary. And it wasn’t a word in your parents’ vocabulary. Why do you think that was the case? And what’s changed?
Yeah, ooh, that’s a good question. The reason why I don’t think it was in our vocabulary, and why I think, especially if and I’m wanting, I’m speaking from the perspective, you know, as a Black female, and what I’ve experienced and seen within like a Black community, is there has not been a really good strong history of mental health support for the Black community. Even now, it really comes down to providers, who’s in your network, who lives close by, who accepts insurance, distance. You know, there’s a whole other like, wave of things where yes, therapists might be there. But that’s only one step of the bigger problem of getting people the help that they need. You know, I know that for my family, and just, you know, like I said, the bigger Black community like growing up what I experienced was, I would say, survivalist kind of mentality. You’re in an environment that might not be hospitable to you. You know, not every part of the city is going to be welcoming to you because of your skin color. There’s already kind of a way that you have to deal with yourself in public and then deal with yourself in private
and mental health was seen as some sort of sign of weakness, or depending on your religion, it could be associated with sin. That’s the information that’s kind of being given to you. And if you don’t have those links, and if you don’t have anyone who’s advocating for you, then it’s really easy to not think that it pertains to you, or it’s really easy to email your struggling- textbook struggling- with the symptoms, with everything, and you know, that you’re at your lowest of the low, there’s a reason why a lot of people disassociate. And they say, well, that’s not me, I’m not disabled. And again, there’s also a lot of distrust, too, you know, when it comes to the type of health services that might be available in your community. You know, unfortunately, the US has a pretty rocky precedent of offering, you know, certain services to minority communities with there being underlying like guise to it. You know, and so I think that you have all this historical context, you know, that gets passed down. Like, there’s just all these layers to it. For my family, I think the biggest thing that changed it was when I was going through my stuff, it was obvious for my family that I was hurting. My mom used to say that when I was younger, there were times when she could just like look in my eyes, and she could see that it was almost like pleading for help. You know, you’re pleading, you know, you need help, but you don’t know why. And other people can see it. And, you know, my parents, they’re, you know, I feel very fortunate, because they took a really hard step for them, which was looking at themselves, realizing how they could help change the dialogue for our family about mental health. Once I started talking to my family members about things that have come up, that’s when we started putting our notes together, and realized that there’s multiple people in our family that have not been diagnosed. But, if they weren’t more likely, it would, they would have major depressive disorder. That is, this is actually something that runs in the family. Which is all wonderful information to have, in general, to know your family health history. Once again, that’s a luxury that a lot of minority and Black communities you know, Black families just don’t have, it’s all important to know, especially when you’re struggling, yourself. Because, once again, it makes you feel like you are coming from a group that has actually experienced it, you’re not alone.
Whitney, I’m really appreciating hearing your story. And thank you for being so open about all of the aspects of it, I think that you’re so spot on with just this idea that mental health disability, specifically, is an area where there is still so much stigma, and I wanted to hear your take on any positive changes, you’ve started to see if any.
It’s been really interesting seeing, like over the past decade especially, how the general public’s understanding of mental health and disability, you know, as a whole, how that has evolved. People are able to share their voice, share their experience, in a whole different way than what you know has ever been there before. People are able to own their space in a vastly different way, as well as their identities. I mean, you know, I feel like the past 10 years has been a very interesting time for our society with going back to the dictionary and looking at how we label ourselves and others, and how we can expand our understanding of the preexisting terminology, but then new terminology. And that has been really exciting. Anytime a community is able to own who they are in their own words. It’s a trickle effect. I feel like you know from this bigger idea of what has changed in the 10 years, to like smaller things. Before we got on the interview we were talking about fidgets spinners; I feel like that’s a perfect example. I think it’s really fascinating that we are starting to incorporate different aids like fidget spinners into our day-to-day routine that regardless of how you fall on that spectrum, you still have a tool that is widely available.
Yeah, I agree with that. And I’m glad you made that observation about what I would say is an example of universal accommodations, right? One of those things we can implement and provide for everybody in a workspace, in a community space, like a fidget where some people may benefit all the time. And some people may benefit occasionally or not find it useful, but it’s there, the option’s there. So what about some of the barriers? What are the biggest barriers that you still encounter?
Yeah, man, I feel like it kind of like gets broken down into different categories. One
barrier is societal barrier, you know, how I’m able to go out and communicate and connect with coworkers or friends when I’m dealing with a mental health episode. And then there’s an internal barrier, right? How open I feel with being able to ask for help, what are my personal roadblocks stopping me from asking for help or seeking help? And then above all of that, you know, I feel like, there can never be enough resources, there’s so many wonderful nonprofits that are trying to cover a lot of ground. And you know, especially within the disabled community, there’s so many different types of just subcategories within the disabled community, there’s so many different types of disabilities, I can’t stress enough, you know, if you’re dealing with a mental health concern, for those who’ve never had to have that same experience as you are similar experience to you, there can be an atmosphere of being judged, I think that stops a lot of people from seeking help that could be good for them. There needs to be better communication, you know, how we talk about issues, dealing with disability, there needs to be a better conversation across the board between people who have disabilities and people who don’t have disabilities, about what that looks like. So um, you know, I there’s just needs to be better dialogue all the way around.
I think that shaming piece that you were getting at is also really big. And one of the- I was just having a conversation the other day with someone about the importance of just believing someone when they disclose, and how far that moment can go in someone’s journey. And whether they decide to continue opening up about it with other people, you know, you could be that person that believed and listened, and what a powerful difference that can make.
That is so true, because you know, sometimes it only takes one person to show disbelief or show just indifference. And that could be the trigger enough for you to make you believe that your story is not important, or what you’re experiencing is not important. Where in fact, it is important, it’s the most important story there is because it’s your story, and it’s your life.
Yeah oh, I love the way put that- it’s the most important story there is that’s so true. So you were drawing some really important connections around the various aspects of your personal identity. And you really highlighted the way that we can’t really separate or talk about these identities in isolation, because they overlap in so many ways. So if you could, Whitney, share how you would describe your personal take on intersectionality? And what does that word mean to you?
Yeah, to me, intersectionality means a layering of your identities and how they fall, for you as a person. For some people, you know, it’s their gender, their sex, their race, their disability, and that’s the order that they feel their identities, following them. You know, for me, I identify as having a disability, and being Black before I identify as being female, which has nothing to say about my dialogue about my own sex or anything, but it has everything more to say about my own personal journey about being a Black woman with disabilities. My entire life has evolved around policies that has dealt very detailed and targeted towards those two identities. And I think having the room and the ability to own and talk about your intersectionality, your identities, and how they hit you, once again, goes back into the importance of your story. Everybody has a slightly different story of how they want to be presented to this world and how they feel like they should be presented.
You shared how it’s almost a motivator for you to push through some of the challenges that come with this work and with sharing your story is knowing that someone else might see you and say, ‘Oh, hey, that’s me. My story’s valid.” If you could think back to when you were growing up. Do you remember seeing or hearing perspectives that you could relate to?
Yea, so, no. Not positive ones. Growing up, there was never in the media Black woman with mental health issues, Black children dealing with mental health. And so even
though for me like seeing from a distance, that there could be some great benefit, you know, of trying to go to therapy and everything else, it just kept getting regurgitated as ‘handle this at home, you handle this in private, you dealt with this by yourself.’ And if
you do get aid or help, it’s not sincere, it’s pity. And as I’ve gotten older, not still not seeing as much representation as I would like. I’m still having a lot of very old, antiquated narratives with people my age, you know, still, about mental health. When you’re dealing with mental health concerns, you know, sometimes your mind lies to you, you know, it tells you false narratives, sometimes your mind can be as hurtful to you as a bully, you know, and, it’s so important to try to be of support for other people so that they can break that cycle. Because, you know, let me tell you, you know, for anyone who has dealt with, you know, major depressive disorder, they know how hard it can be. And I think they understand the word “suffer” to a different degree. One of the biggest things I’ve learned through therapy is you’re not meant to suffer, you know. I just really want everyone who feels like they are suffering, and that it’s out of their control, or, you know, whatever that narrative is, it’s just really important to me that they know that they’re not alone, and that it’s not forever. There’s already so much pain that naturally gets produced in our world. And you know, as humans, we don’t always treat each other as fairly as we should. And to be able to take just an ounce of that pain or suffering away from somebody just by showing up and having a listening ear or, you know, whatever it is, it’s worth it. It’s worth it. I feel like it’s the least that we can do for each other.
Well, Whitney, I think you’re successful already in helping people to not feel alone. And that’s evidenced just by the community that you’ve built through the SPORK! platform and creating a space for people to share stories and feel connected. And it’s exciting to see the growth there, and I wonder what your hopes are for the future.
Yeah, I have a lot of big goals, and hopes and aspirations for SPORK!. I am dying inside to just try to expand our network, try to reach more people, try to bring more stories out there to the general public. We are trying to build up our board of directors,
get new members. We are always looking for volunteers of any type. There’s a lot of help that we could use. But above all that, you know, I just want to put out there that if anyone is interested in sharing their experience, their lived experience, with either having a disability being a part of the disabled community, in any format, we are very open platform. We highly encourage all voices, all lived experiences a part of the greater disabled community. So please feel free to contact me directly at Whitney@SporkAbility.org. I’ll be more than happy to connect you and get you started.
I’m excited to see you all grow and hear different perspectives, expand your mediums and how you’re telling these different stories. I really enjoyed having you with me today, Whitney, I’m really grateful for your time and your perspective. I learned so much just from hearing your story, which is a great example of why making the time for conversation is so important. And I hope that that’s another thing we all take into the new year is making the space for conversation. So thank you!
Thank you so much for having me. I really appreciate it.
Thank you to my guest, Whitney Hill. Check out SPORK! at SporkAbility.org or by clicking the link in the episode description. Join us next time for my conversation with Matthew Shapiro, Founder of 6 Wheels Consulting. Until then, be a part of the inclusive movement by rating and subscribing to Amplify Inclusion and stay connected with us at AspireChicago.com. 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 and members of the Aspire community.
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