July 15, 2020
July 15, 2020

Disability Power Series: Disability Visibility

A conversation with activist Alice Wong and Sky Cubacub, moderated by Disability LeadFellow, Derrick Dawson. Alice released Disability Visibility just in time for the thirtieth anniversary of the Americans with Disabilities Act. The book brings together an urgent, galvanizing collection of personal essays by contemporary disabled writers.

Alice Wong (she/her) is a disabled activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project® (DVP), an online community dedicated to creating, sharing and amplifying disability media and culture created in 2014. 

Sky Cubacub, a contributing writer for Disability Visibility, is a non-binary queer and disabled Filipinx human from Chicago, IL. Rebirth Garments is their line of wearables for the full spectrum of gender, size, and ability. They maintain the notion of Radical Visibility, a movement based on claiming our bodies and, through the use of bright colors, exuberant fabrics, and innovative designs, they refuse to assimilate and are spearheading a Queer and Disabled dress reform movement. They are the editor of the Radical Visibility Zine, a magazine for Queer and Disabled teens based off of their manifesto.  They have had over 40 fashion performances and lectured at the Whitney Museum of American Art, the Rhode Island School of Design, the University of Utah, the School of the Art Institute of Chicago, Northwestern University. Rebirth Garments has been featured in Teen Vogue, Nylon, Playboy, Huffington Post, Buzzfeed, Vice, Wussy Mag, and the New York Times. Sky was named 2018 Chicagoan of the Year by the Chicago Tribune and is a 2019/2020 Kennedy Center Citizen Artist Fellow.  

Derrick Dawson is the Co-Program Coordinator of Chicago Regional Organizing for Antiracism. He began working in social justice after spending 20 years as a trainer in corporate law firms and spent a decade as a broadcaster and journalist in the United States Navy where he served on ships in the Pacific. He is currently a 2020 Fellow of ADA 25 Advancing Leadership.


Disability Lead logo.


>> EMILY BLUM:  Okay. Let's get started.  

This is Emily Blum speaking, I'm the executive director of ADA 25 Advancing Leadership and the description of me is I'm a white woman with brown wavy hair and I'm wearing tortoise shell glasses and a coral dress.  

Thank you for joining us this afternoon including Advancing Leadership leaders. For those of you who may be unfamiliar with ADA 25 Advancing Leadership, we are a network of positive disrupters, all people with disabilities who are using their power to create an equitable and inclusive society and we believe our experiences as people with disabilities are vital to achieving justice. Thank you for attending our disability power series and today's conversation including activist Alice Wong, founder of the Disability Visibility Project, an online community dedicated to amplifying disability media and culture.  

Her new book, Disability Visibility, First Person Stories From the 21st Century, is a moving and powerful collection of essays by disabled people. There's a link in the chat to learn how you can order the book. Alice is joined in conversation by Sky Cubacub. Sky is a Chicago artist, founder of Rebirth Garments and contributor to Disability Visibility and this conversation is moderated by Derrick Dawson, ADA 25 Advancing Leadership 2020 fellow and the co-coordinator of see word.  

Today's event is presented in partnership with Chicago Public Library's diverse ability advocacy, LGBT pride and the Asian-American Pacific islander heritage committees. Thank you to our friends at Chicago Public Library, especially librarian and Advancing Leadership member Evelyn Keolian for making this partnership happen.  

A few more housekeeping notes before we begin. We sent out a guide on accessing key accessibility features in Zoom and we have both CART and ASL interpreters.  If you have any challenges accessing these features, please connect with us via the chat box. My colleagues will be monitoring and responding. Please join the conversation.  Submit your questions via the Q and A function, and later in the program, my colleague, Risa, will be posing your questions to the panelists. If you are tweeting, please use Alice's hashtag, #disabilityvisibility and our hashtag, #disabilitypowerinfluence.  

Also I want to note that this convening is being recorded so we can share it with those who weren't able to attend today. A big thank you to our sponsor and board member, Ann Manikas, who is supporting the series.  Gifts like hers make this and other events possible and accessible. And lastly, if you are a person with a disability living in the Chicago region, and are interested in joining our community, we want to hear from you. In the chat box we will put a link to our website and how you can apply to be a member or a 2021 fellow and with that I'll turn it over to Derrick.  

>> DERRICK DAWSON:  Thank you, Emily. I am Derrick Dawson, I am African-American with a bald head and a short beard.  

Alice, I want to start right away with you. I happen to have a copy of the book early, so I have been able to read it. I know many of us have not been able to read the book, so I'm going to ask you to start by telling us why you wrote the book, who you wrote the book for, and if you could describe the book a little bit, so those of us who have not read it can understand a little bit about what we're talking about in Disability Visibility.

>> ALICE WONG:  Thank you, Derrick.  

Hi, everyone. This is Alice. I am an Asian-American disabled woman. I have short black hair, a dark blue shirt. The background is a dark background and there is a mask over my nose connected to a gray tube over my ventilator. I'm delighted to be with you today, and this is a conversation with my friend Sky, who is a fabulous contributor. And I want to throw a shoutout to the Chicago area.  

So this is an anthology that I edited. And I wrote the introduction, but really the book is about each individual contributor who are an amazing cross-section of this incredibly rich and diverse disability community. And, you know, I really believe that in last 15, 20 years, we've seen a huge growth in work by disabled people, whether it's stories, whether it's artwork, whether it's activism. It's just really picking up in all fields, but at the same time, it's really not enough, and this anthology is basically a snapshot of the here and now. We are only 20 years into this new century. So I really wanted to present a sampling of what I consider important stories and issues that disabled people have.

But also it's a chance to look ahead. So a lot of the stories, you know, is about really a conversation with the past and the present, but always looking towards the future.  And I'm excited about the future, even though these are very -- things are very horrible right now here in 2020. But, you know, I think we also have to think about what we've achieved and also the potential, and there is so much potential within the disability culture and power and activism.  

>> DERRICK DAWSON:  Thank you, Alice.  

You know, Alice, one of the things that struck me about your book is you have stories and essays from such a wide variety of people with such a varying amount of experiences and I read in your book that you believe that representation is very important, and I wonder if you could talk about why representation is important, but also where does representation fall short?  

>> ALICE WONG:  Yeah. So this is Alice.  

It's a very complicated issue, because, you know, I'm pretty tired of -- I think when we have right now are, especially with the mainstream media, and popular culture overall, disabled people are really getting the crumbs, and we're expected to be excited and grateful for these crumbs of representation.  

You know, we still have a lot of TV shows and films featuring disabled characters, but they're played by non-disabled people.  Many of these shows are written by f, directed or produced by non-disabled people. None of the radio stations have shows produced by disabled people. I'd like to question those people. Since we're out in the world, I'd like to see that happen. Cough cough, WBEZ.  

Also, you know, I think there's a lot to be desired and a lot that's missing, and we deserve as, you know, one in four, one in five on this planet have some sort of disability, and with just the numbers, we are close to parity, and we deserve to be seen. And I think what is needed to be understood is (indiscernible) I was born in the mid 70s and I grew up in a virtually isolated existence as a disabled person.  And I think that even today now, even with the Internet and all these things of, you know, there's so many non-disabled kids that are proud of their identities. There's still a lot of people, like they don't feel welcomed in the disability community who are disabled. So I think there's a lot of work yet.  

I think representation is part of that process.  It's not the I feel like the end all, but I think it's part of the process of seeing yourself reflected, and I think it's preceded with so many other communities of color, queer community.  There's such a hunger for representation, because, you know, that is really a part of the process of being connected and being able to claim all your identities and fully being yourself. And that's like a marathon. It takes time for every person. There is still a typical arch. It's still a process.  

So I feel like a book like this will hopefully make people feel a sense of joy and comfort and also just, you know, learning from other disabled people. They may not have your exact disability, but the experiences of feeling different and be creative and be innovative, because let's face it, in spite of what disability you have, we live in a non-disabled world and that fact itself is the commonality in how we respond to that. If there's such brilliance.  

So that's kind of what I wanted to share, and I hope I answered your question.  

>> DERRICK DAWSON:  I appreciate it. And in fact not only did it answer my question.  

>> This meeting is being recorded.  

>> DERRICK DAWSON:  Not only did you answer the question, Alice, but since you talk about brilliance, this might be a good time to bring in Sky to the conversation, because Sky's chapter, Sky's essay, rather, is in the second part of the book. It's called beginning.  

And Sky, you also talk a lot about representation, but you talk about representation with your clothing line, which is called Rebirth Garments, and you use Rebirth Garments to communicate a message around radical visibility. And I wonder if you could share with us how that clothing line got started and what you are doing with that clothing line.  

>> SKY CUBACUB:  Yeah, thank you, this is Sky speaking and I'll give you all a description of what I look like.  

I'm a petite PhilippineX tan person with a lot of tattoos. I have spiky eye liner and an asymmetrical blue lip. I have a head piece and pinks purple teal and yellow and it's very skimmy. Maybe you can hear it. So that helps me with calming myself down. I'm wearing a color blotch crop top and it has sheer parts that can reveal some of my tattoos. I'm wearing a chain mail necklace that's like chain mail out of chain mail. All of these items that I'm wearing, I've made. I have earrings that are in the shape of the queer crip symbol that I created, which mishmashes the new accessible -- accessibility icon with the trans symbol, and these were collaborative earrings the way they're cut by may friend Alex Chen. I'm also wearing a posture harness by my friend Elma Elmo that I wear all the time so I can have less back pain, but it's pretty cool in the back.  

It has a lot of hardware, and I am non-binary so I use have the they them pronoun. And I have a button that says hello, I'm prone to panic attacks. And I'm wearing a necklace that says access bitch, which is the name of a song that I created and that I really believe that Alice Wong is one of the, you know, access bitches of the world.



So yeah. I started my clothing line in 2014, and I wrote this manifesto that has an abridged version in Disability Visibility anthology in 2015, so it was around the time that Alice started the Disability Visibility Project, and right when I was finishing up writing my manifesto, that's when I discovered Alice's work, which was very exciting to me because to see an Asian-American like woman who was like super amazing activist and disabled was just like super exciting 'cause I hardly ever saw any Asian representation in media or anything really growing up, besides like marginalized films.  

And yeah, so I started this clothing line a bit after my stomach kind of stopped working very well in college. I've always been a disabled person. I'm no divergent. I've had anxiety and panic disorder and depression my whole life. And, you know, I've just added to the mental -- the list of mental illnesses since then. But when the stomach disorder happened, it was kind of like my anxiety had turned very physical, and I stopped being able to wear pants that were like jeans or what I call, quote, unquote, hard pants, because the waistband would just make me feel really, really sick.  

So I started the clothing line thinking that I would do two separate clothing lines, one for people with disabilities, and then an lingerie line for trans and nonconforming folks where it would all be gender confirming garments like chest binders and tucking undies and packing undies, but then when I was actually working on the prototypes for the clothing, I decided I should just make this clothing line be one thing and just talk about the intersectionality of everybody so that people could have a clothing line that fully represented them, no matter what their gender expression or their race or sexual identity or disability or size or age was.  

>> DERRICK DAWSON:  Thank you, Sky.  

This conversation is part of ADA 25 Advancing Leadership's power series. And your fashion for those of us who can see you is amazing and colorful and brilliant and the fact that you came to this is a reminder that many of us who live with disabilities, and I think Alice talks about it in her introduction, she says just allowing ourselves to have the vulnerability of being visible is a radical act.  

And so for you to describe yourself as non-binary and disabled and everything that you just named, many of us work really hard to hide those things and shut ourselves down, and you clearly have been able to live into your power. And I wonder for those of us who might be listening who are struggling with finding our own power, what advice would you give? What sources do you use to give yourself that power? And I'm sure it's not constant, I'm sure it's not every day. But you have managed clearly to live into your power. And what lessons can you share with us to help us do that? To model that kind of grasping of power?  

>> SKY CUBACUB:  I guess -- oh, this is Sky speaking. I have heard a lot from people that they feel like no matter what their identity is, whenever they see my clothing, they'll be like oh, I could never pull that off, and then I always say, of course you can. Anybody can pull off anything.  

Or they say that they're too old for it, which I'm just like you're being ageist against yourself. Like why would you say that? I guess the way that I started to come into my power as a disabled person is like just from -- in my childhood, having panic attacks every day at school. So I am not apparently disabled to most people, except for when I'm having a panic attack.  And luckily I have them more under control because now I have a lot more autonomy.  So, you know, I get to dictate whatever I want to do. I think autonomy is the thing that gave me the most strength, whatever that means to you. So part of it is, you know, getting to decide what to dress for me, but also just having, you know, to -- not having to go to school anymore, like school was like a huge thing that I feel like kept my autonomy away from me.  

But yeah, so I would have panic attacks all the time in school, and I remember my eighth grade teacher one time setting me aside and saying like you will not be able to do this in high school.  Like you won't have your mom to run to, because my mom subbed in the grade school that I went to.  You won't be able to do this.  You're going to have to get over this. But little did she know that I would find an art teacher at my high school who became like my second mom, so I could just keep on doing it.  

So I think trying to ignore the people in your life who say that you can't -- that the way that you are acting is like unacceptable when it -- like I wasn't hurting anybody.  I was just -- my nervous system was just so disturbed all the time when I was a kid.  

And I guess, yeah, because of not being able to hide it, then I decided to embrace it. But it took a long time. Like I was having panic attacks every day when I was 20 or 21, and my partner at the time broke up with me because of my panic attacks, and so then after that I decided to have a rebirthing ceremony, which is why my clothing line is called rebirth. I had just met like a really amazing openly schizophrenic artist who like everybody really respected named Heather Lynn and I was working on her sci-fi feminist space opera, helping costume it. And after meeting all these amazing, strong ladies and queers who embraced their like no divergencies, I decided to have this art ceremony that I called a rebirthing ceremony, where I decided that I wouldn't let my anxiety bring me down and instead channel it into my work and my life.  

So I think there's like a quote that's like, a trigger warning, like suicide talk, but just for a second. There's a quote that says like I kill myself in order to not die. Like I think it's from Kate Bornstein.  So that was a way of killing off part of me, like the part where my anxiety wasn't helping me, and where I was letting outward society kind of bring me down, 'cause they were saying that it was unacceptable and just killing that part off and being no, this is acceptable and this is who I am.  

>> DERRICK DAWSON:  And yet as Alice said a few moments ago, even with all that, we still live in a world that privileges able-bodied people.  How do you sustain that, Sky?  

>> SKY CUBACUB:  Well, since I am, you know, seen more as able-bodied than I -- and I pass as able-bodied, so I have more of a problem with, you know, passing as sane and thinking about also the -- how the world, you know, favors sanity always and how, you know, people of color, women, gender variant folks like leave all -- we've all had to be, you know -- I mean physically disabled and folks with other kind of disabilities, like we're all set to the standard of Eurocentric white able-bodied, able-mindedness, and I guess -- I'm sorry, I lost my train of thought.  

>> DERRICK DAWSON:  That's okay.  

You were talking about passing. I was thinking about I think we have this -- we had this conversation earlier. It really resonates with me I think as people of color, as people who are queer, as people who are non-binary, as people who are disabled, that notion of passing is always with us. You talk a lot about that in your essay in the book about your very strong thoughts about passing.  

>> SKY CUBACUB:  Yeah.  

>> DERRICK DAWSON:  Could you say a little bit more about that?  

>> SKY CUBACUB:  Yeah. This is Sky talking.  

Yeah, I'm very anti-passing, because -- and that's what being radically visible is all about, is making sure that we are taking up space visually and physically in the world so that people cannot ignore us, 'cause most of the typical clothing for disabled folks is very unaesthetic and just like, yeah, just makes you feel horrible.  It looks like scrubs. It looks like -- yeah, it just like pathologizes you.  

And, yeah, so I'm anti-passing because I think if -- you know, if we didn't all have the pressure to pass and stay with this, you know -- these idealized standards that are Eurocentric, then, you know, then the world would be a lot better.  Like we would all be able to just live our lives a lot more comfortably if people weren't always just trying to force us to conform to these ideals. Like I live in a very nice bubble where I can be whoever I want, and like my friends around me, we can all be whoever we want, and like it just -- there's just so much -- it's just so much better and it feels like the queer crip utopia that I dream about all the time and I'm trying to create. Yeah.  

>> DERRICK DAWSON:  Thank you. Thank you very much.  

I want to go back to you, Alice, and ask you about this question around power, because you have assembled a number of very powerful -- a very powerful essays, and a couple of them I went back to a couple of times, and it was clear that you had very strong feelings about including these very powerful voices in terms of people struggling with living into their power and what to do with that power once I receive it.  

Can you talk about your perspective on how you chose the essays that you chose and what particular messages you were trying to communicate to the readers?  

>> ALICE WONG:  Yeah. I think this is the privilege of being an editor for many years. I've collected various stories and book marked them on my web browser and over time it's been a huge project, and I wanted it to be a cross-section of things that were powerful, personal, and political.

And, you know, I may not have printed these, it's because these people, the contributors are writing their stories in ways that are just more than I could attempt. And the fact that they talked about their lives on their own terms, unapologetically is really beautiful.  

And I wanted it to be, you know, centered on the wisdom of disabled people, and really there's an intention behind (indiscernible) for example reproductive justice, describing it as autonomy, bodily autonomy is huge. There's a piece about science, there's a piece about violence. There's a piece about disability justice. There's a lot of work that's also grounded in the lived experience, and it's my own pet peeve about some of the things that are out there, is that, yeah, there's a representation, but there's a lot of mediocre representation.  

And I love to be like picky. I have my favorites. I have things that I think everyone should know more about, and this is kind of my attempt to really put a spotlight on these 37 individuals.  It's really less about being the individual, but us collectively as a series, and I think it doesn't tell this grand narrative, but there is something for everyone.  And I love the fact that there's such a variety of, there's such styles, there's so many different cultures and backgrounds, that you really can't deny that this is really the tip of the iceberg. And I think that's the really agenda that I want to advance is that if this was your first experience of diving deep into what you think of what disability culture is, this is just of the iceberg.  

>> DERRICK DAWSON:  Thank you, Alice. I found one of the most fascinating things about the essays was that every essay was new and exciting, and I found myself just being surprised at every turn. I wonder what you learned from compiling these essays and reading these essays? I mean you are one of the most learned -- one of the learned speakers and writers in the disabled community in the country in general. I wonder what you learned that surprised you as you were putting these essays together.  

>> ALICE WONG:  First of all, I don't know if I (indiscernible). I think at the heart of what I do, it's really grounded in love. That sounds easy, right? But I think that's really true. I'm a fan. I think at the heart of what I do with my podcasts, with my blogs, with the Twitter shots and my experiences being online with other disabled people, it's really just being with each other and having this mutual love fest which I think we're all having right now.  

I know that we were all joking with each other, because I think we do know that as disabled people, we don't come together enough and that when we do, there's a -- there is real power, and with this series, there's real power when disabled people get together. I think that's really, really evident in my own life and my own experiences, and I think this is also true for this anthology. This is a curated collection, and I think it's just chock full of power, and I think that's the joy. And I talk a lot about joy in the introduction of my book, and I think that's what drives me. You know, does it give me joy, and if it doesn't give me joy, maybe I don't want to spend my time with this. Maybe I don't want to spend my energy on this.  

So I really want to -- I want all of us to be immersed in one another's joys and abundance, and I think that's the spirit in which I treated this book, and I hope people that vibe with it. Whether they read the whole thing or not. Just, you know, read a few pieces. I hope you come away with that.  

>> DERRICK DAWSON:  Thank you. Thank you.  

So everyone, in a few moments, again, this is Derrick Dawson speaking. In a few moments we're going to open it up to your questions, so this is just a reminder to go into the Q and A and add your questions so that we can address those in a moment.  

My last question, though, is to you, Sky, and I want to ask you as Alice just talked about what gives her joy, and I'd love if you can share what gives you joy in your work, with your fashion line. What gives you joy, Sky?  

>> SKY CUBACUB:  So this is Sky speaking.  

I get so much joy from my models and from the people that I work with. Just being able to, you know, really interview them very in depth, and get to know what would kind of create their most dreamy, accessible, and like gender and I like to do that and look at how their whole confidence might completely change in front of my eyes. And like I've heard people who have said before that like, you know, they were like kind of desperate to get top surgery or bottom surgery or something like that, but being able to find like fun and cute gender affirming lingerie made it so they didn't necessarily feel the pressure to get that.  

Whereas before they felt very pressured by society, and you know, I think everybody should get whatever surgery that they want that is gender affirming, but I think it's really magical that just my clothing could make it so that they felt affirmed enough in their body that they don't necessarily feel the need, because that's kind of how I felt.  Like when I was in high school and getting kind of interested in chest binding and things like that. But through being able to make my own clothing, I don't even find it necessary to chest bind because I feel comfy.  

So yeah, I love my models, I love seeing people wear my clothing and get joy from that, and I also really do enjoy the act of making -- I mean I wouldn't do it if I didn't love making clothing.  It's another thing that helps calm my brain. But even though I know it does stress me out sometimes when I have literally 500 orders --  


>> DERRICK DAWSON:  You can handle it, Sky.  And tell us again what the name of your clothing line is.  

>> SKY CUBACUB:  It's Rebirth Garments and you can follow me on Instagram, TikTok and Twitter at Rebirth Garments and on Facebook at Rebirth Garments. The words are separate. I am newly TikTok famous.  I just have been on it for one week and I accidentally got 3.6 million views on one. It's kind of wild. But on TikTok I'm putting a lot of videos about accessibility and the accessible face masks that I've been making, because that's what I've been focusing on. I've been making face masks with the queer window panels for deaf and hard of hearing folks/also people who might not speak the same language as you as a first language, and working with children, et cetera. And also they all have like different attachment styles, so there's magnets, snaps, Velcro, the ties, the ear loops. I'm also trying to come up with one that you can put on without the use of your hands at all.  Just by putting it on like your bed or something.  

So yeah, sorry, that was long.

>> DERRICK DAWSON:  Not at all. Thank you for sharing.  

I am going to turn it back over to Emily so she can get to the questions and answers that some of the audience are chomping at the bit to hear and I will say that this has been an honor to be with both of you, Sky, and Alice. I thank you very much and I really appreciate your work, and I appreciate your willingness to share your power with me and the rest of us. Thank you so much. Emily?  

>> RISA RIFKIND:  Hi, everyone. This is actually Risa. Surprise, Derrick. It's not Emily, but Risa Rifkind.  

And the first question from the audience, and thank you all so much for submitting questions, is in your opinion, what's the next step to create equity for persons with disabilities, and elevate their voices? You know, whether that be politically, socially, et cetera?  

>> ALICE WONG:  Is this for anyone?  

>> RISA RIFKIND:  This is for Risa, I think it can be answered for any and all of you, so whoever wants to jump in first, please do.  

>> ALICE WONG:  I guess I'll go first. This is Alice.  

Well, I think a lot about this idea of power or equity, but I think for me, I'm much more interested in justice, you know? I think our representation is important, but it's not enough, and I want to see systemic change, and I do believe that shifting the culture is a huge factor to make that happen.  

So I think to answer the question, you know, I think people need to -- everybody has the capacity to get involved and be really embrace their interests and passions, as our story is so into design and clothing, for people to ask themselves, what do I care about? What's important to me in my life? I think that's how we get to equity is to really delve into who we are and kind of figuring out what our purpose is and also what we want to do with our time on this planet.  

For me the work I create is kind of our way of building the future world that I want here for all of us, and that means it's a place where everybody's free, everyone has inherent worth, and everyone recognizes their interdependence with one another, and I think just for my own development as a person, disability justice has taught me a lot about liberation and justice. And equity is part of that liberation and justice, and Patti Bird, who is one of the contributors in this anthology who has a fantastic piece about climate change, she's one of the key people who developed the disability justice free work, and I want to give her a shoutout.  

You should definitely buy her disability justice primer which is titled (indiscernible) the basis of our movement is our people, and it's in workshop right now. Thank you for your question.  

>> SKY CUBACUB:  This is Sky speaking.  

I would agree with Alice.  Like, you know, my Philippine grandmother growing up wanted me to be a doctor always, and, you know, I really pushed against that, and even though I think if I was a doctor, I could try to work on that kind of systemic change, but I would absolutely hate it and have, you know -- I would be so scared all the time. So -- and it would be like way too much pressure on me to be a doctor. So that's why I delved into my art work and my design because I think that that's where I can create the most change and do the most good, 'cause it's what I have the most energy to do and what kind of can keep me going, and yeah. So that's it.  

>> RISA RIFKIND:  This is Risa, thank you for answering the first question.  

I have another question here of 2020 has been presented with so many opportunities to be united and grow in allyship.  As a non-disabled peer, what can I do to amplify the narrative here?  What are some best practices? And again this is open to anyone who wants to jump in.  

>> ALICE WONG:  This is Alice.  

You know, I would definitely -- I'm really glad that there are people who are non-disabled who want to be allies, and I think, you know, being an ally to me is really about being in solidarity with other disabled people and it can be transactional. We should care about Black Lives Matter because Black Lives Matter. Not because of what's -- (indiscernible) I think that's a really important thing to think about, whatever we want to be. Co-conspirators, accomplices with other communities.  

So I think that's the first thing that comes to my mind with non-disabled people asking, oh, how can I be an ally? Well, you can show up for us, and you know what?  Believe what we say when we say XYZ is super problematic. I think one of the things that a lot of people, disabled people, are very truthful about that they're often not believed or dismissed by non-disabled people, and I think that's one of the most harmful effects of ablism, is this sense of like, oh, you know, oh, really? Like seriously?  Aren't you exaggerating?  

For example I think disabled people have said very early on during this coronavirus pandemic to like, you know, we are -- this is all out genocide and an attempt at eugenics, because it's clearly -- what it's clearly shown is that Black, brown, indigenous, disabled, older people, are considered disposable. And there's still a lot of people like, oh, but let's reopen the economy. This is only affecting, you know, high risk people. Like this is -- you know, everybody else is going to be fine. Well, if you're okay with those attitudes, if you're okay with genocide and I think that's something that's really important is to listen and learn and have interest in what you know and don't know, and I personally have a lot of work to do myself. There's no such thing as a perfect person in terms of being, quote, unquote, woke.  

And I'm using that word with a little bit of side eye, and I think that other ways is -- in concrete actions is support our works, support artists like Sky. Support this organization, ADA 25 Advancing Leadership. Pass the mic. If there's an event that your organization or workplace is having a diversity and inclusion and you notice there's no disabled people in it, you have an obligation to say, hey, something's missing here. And you should get a disabled person to speak on this, versus an advocate for us, not by us.  And there's a bit of a history of people speaking for us on our behalf. So I really hope that allies center disabled people and anything about disability and also just to be frank, pay us for our expertise.  

You know, we're not here to give free education.  Hire us as your staff, as consultants, as your speakers, because we're not here for the crumbs. We're not here for exposure. You have to value us for our talents and our skills, and if I may be so bold, I will say I do suggest this book and listen to my podcasts, I'm on Twitter. Spotify. There are other disabled podcasts out there. So just participate and open your purse if you have the means.  

>> SKY CUBACUB:  This is Sky.  

I just got the audio book of Disability Visibility today so I could listen to it while I work as well. I love reading books but I don't usually get the chance to sit down, because I am almost always working pretty much if I'm not sleeping. So I highly recommend the audio book. Alice reads her own introduction and I almost started crying because it was just so exciting to me. Like I was like this is the best thing that has ever happened. Like I truly believe that Alice Wong is a national treasure.  


You are. You are.  

>> DERRICK DAWSON:  I had the same experience with the audio book. I completely agree with you. Yes.  

>> ALICE WONG:  And this is Alice.  

If I could just jump in about the audio book. The narrator is a disabled person, and I'm really proud of the fact that the audio book is read by a disabled person, and for those of you who do much audio books and listen to it, I feel like really there's a difference, because I feel like in the way that she -- or her intonation, she gets it, and I think that is why, you know, one of the things that's important to me with disability is to spread the love.  

And also give the material opportunities to other disabled people, because it is not just -- it's not about me. I do want to say that about my website, I also have a summary that's free for any person who doesn't -- who can't afford the book or (indiscernible) a disabled writer and there's also a free piece by a disabled writer, David Ortiz, so I really envision a lot of resources that non-disabled folks and disabled folks can use to really spark conversation  and reflection about this book.  Let this be a springboard to dive in more and just, you know, splash around.  

>> RISA RIFKIND:  This is Risa. Thank you so much for those answers. I'm going to try and squeeze in two questions to wrap this up, after which Emily will come back on for some closing remarks.  And they're two very different questions, but I would love your thoughts on them.  

The first question is how do you navigate the potential safety risk of living as your full safe?  This is from a trans man fat disabled person.  

The last question to bring us home if you will is how do you channel joy in the face of so much collective grief?  

So with that I want to thank you and turn it over to you.  

>> ALICE WONG:  Sky, do you want to go over the first question and I'll do the seconds one?  

>> SKY CUBACUB:  Okay. Well, so when I started to be radically visible at a young age, because I've always had something about my body or my look, just mainly based off of my style that was unusual, like when I was a child, my hair was below my butt, and then when I was 15, I started dressing the way that I dress now basically. Just maybe a little bit less -- I made a little bit less of the stuff that I wore. But it was very colorful.  

When I started dating my first girlfriend when I was 15, I wore cat ears and when I first started dressing in this way, and being very outwardly queer, on the street, I would get a lot of comments, and I would sometimes get grabbed by creepy guys physically, and like on the CTA, the Chicago transit here, I would also sometimes get grabbed. But then I started wearing this makeup that looks like a tattoo, and that actually was a way to make myself more radically visible but also kind of act like a -- you know, a poisoned frog where it's like beautiful but you want to stay away from it because everybody was like, oh, my God, you have a face tattoo. You must be tough, even though I'm very small. I'm like five foot one and a half.  

And like petite, so, you know, people can physically pick me up very easily and would sometimes do that, but having tattoos, having this makeup that looks like a face tattoo has helped me kind of create a sense of -- yeah, safety and armor and like, you know, actually wearing literal armor and so that has helped me be radically visible but also feel a little bit safer. Sometimes it doesn't always work, and then I have to just kind of try to escape situations, but generally it's been better. It was a lot worse when I was a teenager. But I also, you know, now have cultivated the right kind of bitch face that you like walk down -- or like roll down Chicago looking a little bit mean so that nobody messes with you.  

But then if somebody smiles at me, then I say hi, you know?  


>> ALICE WONG:  This is Alice.  

I would say, you know, finding joy is really hard, but I think, you know, I do think that now more than ever, when these times are so bleak and they seem overwhelming, and they're really painful, right? There's a lot of grief, there's pain. You know, thinking about what's happening with the uprisings for racial justice and just stories of people dying and being sick. It is really irresponsible and selfish, you know. I feel like we have to try to be very intentional and carving that timeout and making space for pleasure and joy. And I think that's hard to do. That's easy to say. Everybody likes to throw out the word self-care. Self-care this, self-care that, just put on a face mask, or, you know, get in a bubble bath or buy this thing.  

But, you know, for me it's just about slowing down. It's like, you know, I take breaks. I don't want to be on all the time.  I feel like I reached a point in my life where I do have control over my day, and that's been the biggest thing about autonomy again. I feel like I'm doing (indiscernible) autonomy and power. I think they're interrelated.But yeah, I think make the time and the discipline, right? It's practice.  

>> DERRICK DAWSON:  Yeah.  Oh, I'm sorry.  

>> ALICE WONG:  Oh, yeah.  I would just say it's discipline and practice to like care for yourself and love for yourself. So just to answer the question, I do that through eating ice cream or I watch cat videos. I have this individual like direct -- like direct message threads with my friends, which I'm a softy about some things. I'm in that safe space. Just like say whatever I want.  And just can you believe this?  

So that gives me joy, and I think, you know, we all have that capacity to offer that care for one another. So I guess that's my advice, to be intentional about it.  

You deserve it. Nobody should tell you what you have to do in terms of what's expected. And you should be able to push back and say, no, this is what I did.  I'm going to sleep in tomorrow. I need to nourish myself. Or I'm going to treat myself, and I think that's -- we all deserve that. We should always tell each other that all the time.


>> EMILY BLUM:  Wow, this was certainly a treat.  This is Emily Blum speaking.  Alice, Sky, Derrick, thank you all so much.  This was really -- I brought us joy and for those of us who attended this felt like self-care.  So thank you so much, Alice. Thank you also to all of our guests who joined us today and a big thank you to all those who donated and our power series sponsor and board member, Ann Manikas. You help make this accessible. And to our partner Chicago Public Library, LGBT pride, and the Asian-American Pacific islander committees. We thank you very much.  

Before we conclude, our next power series is scheduled for August 25, and will feature a conversation on the census and why the disability count is more important than ever. There is a slide that shows the power and justice 2020 census conversation. We hope you will join us August 25.  

Join our network of positive disrupters. If you're a person with a disability in the Chicago region and want to join our community, visit our website. Become a member or a fellow in our 2021 leadership institute. If you'd like to see us continue producing accessible events like this, contribute to our program at ADA25Chicago.org/donate.  We will be publishing this video and a recap of this event.  

So with that, thank you and good night. We'll see you next time.  

>> DERRICK DAWSON:  Thank you.  

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