Past Event

DISABILITY POWER SERIES: Disability Visibility



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

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

Thankyou for joining us this afternoon including Advancing Leadership leaders.  For those of you who may be unfamiliar withADA 25 Advancing Leadership, we are a network of positive disrupters, allpeople with disabilities who are using their power to create an equitable andinclusive society and we believe our experiences as people with disabilitiesare vital to achieving justice.

Thankyou for attending our disability power series and today's conversationincluding activist Alice Wong, founder of the Disability Visibility Project, anonline community dedicated to amplifying disability media and culture.  

Hernew book, Disability Visibility, First Person Stories From the 21st Century, isa moving and powerful collection of essays by disabled people.  There's a link in the chat to learn how youcan order the book.

Aliceis joined in conversation by Sky Cubacub. Sky is a Chicago artist, founder of Rebirth Garments and contributor toDisability Visibility and this conversation is moderated by Derrick Dawson, ADA25 Advancing Leadership 2020 fellow and the co‑coordinator of see word.

Today'sevent is presented in partnership with Chicago Public Library's diverse abilityadvocacy, LGBT pride and the Asian‑American Pacific islander heritagecommittees.  Thank you to our friends atChicago Public Library, especially librarian and Advancing Leadership memberEvelyn Keolian for making this partnership happen.

Afew more housekeeping notes before we begin. We sent out a guide on accessing key accessibility features in Zoom andwe have both CART and ASL interpreters. If you have any challenges accessing these features, please connect withus via the chat box.  My colleagues willbe monitoring and responding.

Pleasejoin the conversation.  Submit yourquestions via the Q and A function, and later in the program, my colleague,Risa, will be posing your questions to the panelists.

Ifyou are tweeting, please use Alice's hashtag, #disabilityvisibility and ourhashtag, #disabilitypowerinfluence.

AlsoI want to note that this convening is being recorded so we can share it withthose who weren't able to attend today. A big thank you to our sponsor and board member, Ann Manikas, who issupporting the series.  Gifts like hersmake this and other events possible and accessible.

Andlastly, if you are a person with a disability living in the Chicago region, andare interested in joining our community, we want to hear from you.  In the chat box we will put a link to ourwebsite and how you can apply to be a member or a 2021 fellow and with thatI'll turn it over to Derrick.

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

Alice,I want to start right away with you.  Ihappen 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 readthe book, so I'm going to ask you to start by telling us why you wrote thebook, who you wrote the book for, and if you could describe the book a littlebit, so those of us who have not read it can understand a little bit about whatwe'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 blueshirt.  The background is a darkbackground and there is a mask over my nose connected to a gray tube over myventilator.

I'mdelighted to be with you today, and this is a conversation with my friend Sky,who is a fabulous contributor.  And Iwant to throw a shoutout to the Chicago area.

Sothis is an anthology that I edited.  AndI wrote the introduction, but really the book is about each individualcontributor who are an amazing cross‑section of this incredibly rich anddiverse disability community.  And, youknow, I really believe that in last 15, 20 years, we've seen a huge growth inwork by disabled people, whether it's stories, whether it's artwork, whetherit's activism.  

It'sjust really picking up in all fields, but at the same time, it's really notenough, and this anthology is basically a snapshot of the here and now.  We are only 20 years into this newcentury.  So I really wanted to present asampling of what I consider important stories and issues that disabled peoplehave.

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

>>DERRICK DAWSON:  Thank you, Alice.  

Youknow, Alice, one of the things that struck me about your book is you havestories and essays from such a wide variety of people with such a varyingamount of experiences and I read in your book that you believe thatrepresentation is very important, and I wonder if you could talk about whyrepresentation is important, but also where does representation fallshort?  

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

It'sa very complicated issue, because, you know, I'm pretty tired of ‑‑ I thinkwhen we have right now are, especially with the mainstream media, and popularculture overall, disabled people are really getting the crumbs, and we'reexpected to be excited and grateful for these crumbs of representation.  

Youknow, 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‑disabledpeople.  

Noneof 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 seethat happen.  Cough cough, WBEZ.

Also,you know, I think there's a lot to be desired and a lot that's missing, and wedeserve as, you know, one in four, one in five on this planet have some sort ofdisability, and with just the numbers, we are close to parity, and we deserveto be seen.

AndI think what is needed to be understood is (indiscernible) I was born in themid 70s and I grew up in a virtually isolated existence as a disabledperson.  

AndI 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 theiridentities.  There's still a lot ofpeople, like they don't feel welcomed in the disability community who aredisabled.  So I think there's a lot ofwork yet.

Ithink representation is part of that process. It's not the I feel like the end all, but I think it's part of theprocess of seeing yourself reflected, and I think it's preceded with so manyother communities of color, queer community. There's such a hunger for representation, because, you know, that isreally a part of the process of being connected and being able to claim all youridentities and fully being yourself.

Andthat's like a marathon.  It takes timefor every person.  There is still atypical arch.  It's still a process.

SoI feel like a book like this will hopefully make people feel a sense of joy andcomfort and also just, you know, learning from other disabled people.  They may not have your exact disability, butthe experiences of feeling different and be creative and be innovative, becauselet's face it, in spite of what disability you have, we live in a non‑disabledworld and that fact itself is the commonality in how we respond to that.

Ifthere's such brilliance.  So that's kindof 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 myquestion.

>>This meeting is being recorded.  

>>DERRICK DAWSON:  Not only did you answerthe question, Alice, but since you talk about brilliance, this might be a goodtime 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.

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

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

I'ma petite PhilippineX tan person with a lot of tattoos.  I have spiky eye liner and an asymmetricalblue lip.  I have a head piece and pinkspurple teal and yellow and it's very skimmy. Maybe you can hear it.  So thathelps me with calming myself down.

I'mwearing a color blotch crop top and it has sheer parts that can reveal some ofmy tattoos.  I'm wearing a chain mailnecklace that's like chain mail out of chain mail.  All of these items that I'm wearing, I'vemade.  

Ihave earrings that are in the shape of the queer crip symbol that I created,which mishmashes the new accessible ‑‑ accessibility icon with the transsymbol, and these were collaborative earrings the way they're cut by may friendAlex Chen.  I'm also wearing a postureharness by my friend Elma Elmo that I wear all the time so I can have less backpain, but it's pretty cool in the back.

Ithas a lot of hardware, and I am non‑binary so I use have the they thempronoun.  And I have a button that sayshello, I'm prone to panic attacks.  AndI'm wearing a necklace that says access bitch, which is the name of a song thatI created and that I really believe that Alice Wong is one of the, you know,access bitches of the world.  


Soyeah.  I started my clothing line in2014, and I wrote this manifesto that has an abridged version in DisabilityVisibility anthology in 2015, so it was around the time that Alice started theDisability Visibility Project, and right when I was finishing up writing mymanifesto, that's when I discovered Alice's work, which was very exciting to mebecause to see an Asian‑American like woman who was like super amazing activistand disabled was just like super exciting 'cause I hardly ever saw any Asianrepresentation in media or anything really growing up, besides like marginalizedfilms.  

Andyeah, so I started this clothing line a bit after my stomach kind of stoppedworking very well in college.  I'vealways been a disabled person.  I'm nodivergent.  I've had anxiety and panicdisorder and depression my whole life. And, you know, I've just added to the mental ‑‑ the list of mentalillnesses since then.

Butwhen the stomach disorder happened, it was kind of like my anxiety had turnedvery physical, and I stopped being able to wear pants that were like jeans orwhat I call, quote, unquote, hard pants, because the waistband would just makeme feel really, really sick.  

SoI started the clothing line thinking that I would do two separate clothinglines, one for people with disabilities, and then an lingerie line for transand nonconforming folks where it would all be gender confirming garments likechest binders and tucking undies and packing undies, but then when I wasactually working on the prototypes for the clothing, I decided I should justmake this clothing line be one thing and just talk about the intersectionalityof everybody so that people could have a clothing line that fully representedthem, no matter what their gender expression or their race or sexual identityor disability or size or age was.  

>>DERRICK DAWSON:  Thank you, Sky.

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

Andso for you to describe yourself as non‑binary and disabled and everything thatyou just named, many of us work really hard to hide those things and shutourselves down, and you clearly have been able to live into your power.  

AndI wonder for those of us who might be listening who are struggling with findingour 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'snot every day.  But you have managedclearly to live into your power.

Andwhat 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 isSky speaking.

Ihave heard a lot from people that they feel like no matter what their identityis, whenever they see my clothing, they'll be like oh, I could never pull thatoff, and then I always say, of course you can. Anybody can pull off anything.  

Orthey say that they're too old for it, which I'm just like you're being ageistagainst yourself.  Like why would you saythat?  

Iguess the way that I started to come into my power as a disabled person is likejust from ‑‑ in my childhood, having panic attacks every day atschool.  

SoI am not apparently disabled to most people, except for when I'm having a panicattack.  And luckily I have them moreunder control because now I have a lot more autonomy.  So, you know, I get to dictate whatever Iwant to do.

Ithink autonomy is the thing that gave me the most strength, whatever that meansto 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 hugething that I feel like kept my autonomy away from me.  

Butyeah, so I would have panic attacks all the time in school, and I remember myeighth grade teacher one time setting me aside and saying like you will not beable to do this in high school.  Like youwon't have your mom to run to, because my mom subbed in the grade school that Iwent to.  You won't be able to dothis.  You're going to have to get overthis.

Butlittle did she know that I would find an art teacher at my high school whobecame like my second mom, so I could just keep on doing it.

SoI 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 Iwasn't hurting anybody.  I was just ‑‑my nervous system was just so disturbed all the time when I was a kid.  

AndI guess, yeah, because of not being able to hide it, then I decided to embraceit.  But it took a long time.  Like I was having panic attacks every daywhen I was 20 or 21, and my partner at the time broke up with me because of mypanic attacks, and so then after that I decided to have a rebirthing ceremony,which is why my clothing line is called rebirth.  

Ihad just met like a really amazing openly schizophrenic artist who likeeverybody really respected named Heather Lynn and I was working on her sci‑fifeminist space opera, helping costume it. And after meeting all these amazing, strong ladies and queers whoembraced their like no divergencies, I decided to have this art ceremony that Icalled a rebirthing ceremony, where I decided that I wouldn't let my anxietybring me down and instead channel it into my work and my life.

SoI think there's like a quote that's like, a trigger warning, like suicide talk,but just for a second.  There's a quotethat 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 lettingoutward society kind of bring me down, 'cause they were saying that it wasunacceptable and just killing that part off and being no, this is acceptableand this is who I am.

>>DERRICK DAWSON:  And yet as Alice said afew moments ago, even with all that, we still live in a world that privilegesable‑bodied people.  How do you sustainthat, Sky?  

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

>>DERRICK DAWSON:  That's okay.  

Youwere talking about passing.  I wasthinking about I think we have this ‑‑ we had this conversationearlier.  It really resonates with me Ithink 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.

Youtalk a lot about that in your essay in the book about your very strong thoughtsabout passing.  


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

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

Yeah,I'm very anti‑passing, because ‑‑ and that's what being radically visibleis all about, is making sure that we are taking up space visually andphysically in the world so that people cannot ignore us, 'cause most of thetypical clothing for disabled folks is very unaesthetic and just like, yeah,just makes you feel horrible.  It lookslike 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 allhave the pressure to pass and stay with this, you know ‑‑ these idealizedstandards that are Eurocentric, then, you know, then the world would be a lotbetter.  Like we would all be able tojust live our lives a lot more comfortably if people weren't always just tryingto force us to conform to these ideals.

LikeI live in a very nice bubble where I can be whoever I want, and like my friendsaround me, we can all be whoever we want, and like it just ‑‑ there's justso much ‑‑ it's just so much better and it feels like the queer criputopia that I dream about all the time and I'm trying to create.  Yeah.  

>>DERRICK DAWSON:  Thank you.  

Thankyou very much.  

Iwant 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 powerfulessays, and a couple of them I went back to a couple of times, and it was clearthat you had very strong feelings about including these very powerful voices interms of people struggling with living into their power and what to do withthat power once I receive it.

Canyou talk about your perspective on how you chose the essays that you chose andwhat particular messages you were trying to communicate to the readers?  

>>ALICE WONG:  Yeah.  I think this is the privilege of being aneditor for many years.  I've collectedvarious stories and book marked them on my web browser and over time it's beena huge project, and I wanted it to be a cross‑section of things that werepowerful, personal, and political.  

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

AndI wanted it to be, you know, centered on the wisdom of disabled people, andreally there's an intention behind (indiscernible) for example reproductivejustice, describing it as autonomy, bodily autonomy is huge.  

There'sa piece about science, there's a piece about violence.  There's a piece about disabilityjustice.  There's a lot of work that'salso grounded in the lived experience, and it's my own pet peeve about some ofthe things that are out there, is that, yeah, there's a representation, but there'sa lot of mediocre representation.  

AndI love to be like picky.  I have myfavorites.  I have things that I thinkeveryone should know more about, and this is kind of my attempt to really put aspotlight on these 37 individuals.  It'sreally less about being the individual, but us collectively as a series, and Ithink it doesn't tell this grand narrative, but there is something foreveryone.  

AndI love the fact that there's such a variety of, there's such styles, there's somany different cultures and backgrounds, that you really can't deny that thisis really the tip of the iceberg.  And Ithink that's the really agenda that I want to advance is that if this was yourfirst experience of diving deep into what you think of what disability cultureis, this is just of the iceberg.

>>DERRICK DAWSON:  Thank you, Alice.  I found one of the most fascinating thingsabout the essays was that every essay was new and exciting, and I found myselfjust being surprised at every turn.

Iwonder what you learned from compiling these essays and reading theseessays?  I mean you are one of the mostlearned ‑‑ one of the learned speakers and writers in the disabledcommunity in the country in general.  

Iwonder what you learned that surprised you as you were putting these essaystogether.  

>>ALICE WONG:  First of all, I don't knowif I (indiscernible).  I think at theheart 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, withthe 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 Ithink we're all having right now.

Iknow that we were all joking with each other, because I think we do know thatas disabled people, we don't come together enough and that when we do, there'sa ‑‑ there is real power, and with this series, there's real power whendisabled people get together.  I thinkthat's really, really evident in my own life and my own experiences, and Ithink this is also true for this anthology.

Thisis a curated collection, and I think it's just chock full of power, and I thinkthat's the joy.  And I talk a lot aboutjoy in the introduction of my book, and I think that's what drives me.  You know, does it give me joy, and if itdoesn't give me joy, maybe I don't want to spend my time with this.  Maybe I don't want to spend my energy onthis.

SoI really want to ‑‑ I want all of us to be immersed in one another's joysand abundance, and I think that's the spirit in which I treated this book, andI hope people that vibe with it.  Whetherthey read the whole thing or not.  Just,you know, read a few pieces.  I hope youcome away with that.  

>>DERRICK DAWSON:  Thank you.  Thank you.

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

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

>>SKY CUBACUB:  So this is Sky speaking.

Iget so much joy from my models and from the people that I work with.  Just being able to, you know, reallyinterview them very in depth, and get to know what would kind of create their mostdreamy, accessible, and like gender and I like to do that and look at how theirwhole confidence might completely change in front of my eyes.

Andlike I've heard people who have said before that like, you know, they were likekind 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 sothey didn't necessarily feel the pressure to get that.

Whereasbefore they felt very pressured by society, and you know, I think everybodyshould get whatever surgery that they want that is gender affirming, but Ithink it's really magical that just my clothing could make it so that they feltaffirmed enough in their body that they don't necessarily feel the need,because that's kind of how I felt.  Likewhen I was in high school and getting kind of interested in chest binding andthings like that.  But through being ableto make my own clothing, I don't even find it necessary to chest bind because Ifeel comfy.

Soyeah, I love my models, I love seeing people wear my clothing and get joy fromthat, and I also really do enjoy the act of making ‑‑ I mean I wouldn't doit if I didn't love making clothing. It's another thing that helps calm my brain.

Buteven though I know it does stress me out sometimes when I have literally 500orders ‑‑


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

>>SKY CUBACUB:  It's Rebirth Garments andyou can follow me on Instagram, TikTok and Twitter at Rebirth Garments and onFacebook at Rebirth Garments.  The wordsare separate.

Iam newly TikTok famous.  I just have beenon 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 videosabout 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 andhard of hearing folks/also people who might not speak the same language as youas a first language, and working with children, et cetera.  And also they all have like differentattachment styles, so there's magnets, snaps, Velcro, the ties, the ear loops.  I'm also trying to come up with one that youcan put on without the use of your hands at all.  Just by putting it on like your bed orsomething.  

Soyeah, sorry, that was long.

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

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


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

Andthe first question from the audience, and thank you all so much for submittingquestions, is in your opinion, what's the next step to create equity forpersons 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 thinkit 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 muchmore interested in justice, you know?  Ithink our representation is important, but it's not enough, and I want to seesystemic change, and I do believe that shifting the culture is a huge factor tomake that happen.

SoI think to answer the question, you know, I think people need to ‑‑everybody has the capacity to get involved and be really embrace theirinterests and passions, as our story is so into design and clothing, for peopleto ask themselves, what do I care about? What's important to me in my life?

Ithink that's how we get to equity is to really delve into who we are and kindof figuring out what our purpose is and also what we want to do with our timeon this planet.  

Forme the work I create is kind of our way of building the future world that Iwant 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 withone another, and I think just for my own development as a person, disability justicehas taught me a lot about liberation and justice.  

Andequity is part of that, but I think, you know, for me it is about liberationand justice, and Patti Bird, who is one of the contributors in this anthologywho has a fantastic piece about climate change, she's one of the key people whodeveloped the disability justice free work, and I want to give her a shoutout.

Youshould definitely buy her disability justice primer which is titled(indiscernible) the basis of our movement is our people, and it's in workshopright now.  

Thankyou for your question.  

>>SKY CUBACUB:  This is Sky speaking.  

Iwould agree with Alice.  Like, you know,my Philippine grandmother growing up wanted me to be a doctor always, and, youknow, 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 absolutelyhate 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 andmy design because I think that that's where I can create the most change and dothe most good, 'cause it's what I have the most energy to do and what kind ofcan keep me going, and yeah.  So that'sit.  

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

Ihave another question here of 2020 has been presented with so manyopportunities to be united and grow in allyship.  As a non‑disabled peer, what can I do toamplify the narrative here?  What aresome best practices?  

Andagain this is open to anyone who wants to jump in.  

>>ALICE WONG:  This is Alice.

Youknow, I would definitely ‑‑ I'm really glad that there are people who arenon‑disabled who want to be allies, and I think, you know, being an ally to meis really about being in solidarity with other disabled people and it can betransactional.  

Weshould 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 tobe.  Co‑conspirators, accomplices withother communities.

SoI think that's the first thing that comes to my mind with non‑disabled peopleasking, 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.

Ithink one of the things that a lot of people, disabled people, are verytruthful about that they're often not believed or dismissed by non‑disabledpeople, and I think that's one of the most harmful effects of ablism, is thissense of like, oh, you know, oh, really? Like seriously?  Aren't youexaggerating?  

Forexample I think disabled people have said very early on during this coronaviruspandemic to like, you know, we are ‑‑ this is all out genocide and anattempt at eugenics, because it's clearly ‑‑ what it's clearly shown isthat Black, brown, indigenous, disabled, older people, are considereddisposable.

Andthere's still a lot of people like, oh, but let's reopen the economy.  This is only affecting, you know, high riskpeople.  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 thinkthat's something that's really important is to listen and learn and haveinterest in what you know and don't know, and I personally have a lot of workto do myself.  There's no such thing as aperfect person in terms of being, quote, unquote, woke.

AndI'm using that word with a little bit of side eye, and I think that other waysis ‑‑ in concrete actions is support our works, support artists likeSky.  Support this organization, ADA 25Advancing Leadership.  Pass the mic.  If there's an event that your organization orworkplace is having a diversity and inclusion and you notice there's nodisabled people in it, you have an obligation to say, hey, something's missinghere.

Andyou should get a disabled person to speak on this, versus an advocate for us,not by us.  And there's a bit of ahistory of people speaking for us on our behalf.  So I really hope that allies center disabledpeople and anything about disability and also just to be frank, pay us for ourexpertise.

Youknow, we're not here to give free education. Hire us as your staff, as consultants, as your speakers, because we'renot here for the crumbs.  We're not herefor exposure.  You have to value us forour talents and our skills, and if I may be so bold, I will say I do suggestthis book and listen to my podcasts, I'm on Twitter.  Spotify.

Thereare other disabled podcasts out there. So just participate and open your purse if you have the means.  

>>SKY CUBACUB:  This is Sky.  

Ijust got the audio book of Disability Visibility today so I could listen to itwhile I work as well.  I love readingbooks but I don't usually get the chance to sit down, because I am almostalways 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 itwas just so exciting to me.

LikeI was like this is the best thing that has ever happened.  Like I truly believe that Alice Wong is anational treasure.  


Youare.  You are.  

>>DERRICK DAWSON:  I had the sameexperience with the audio book.  I completelyagree with you.  Yes.  

>>ALICE WONG:  And this is Alice.

IfI could just jump in about the audio book. The narrator is a disabled person, and I'm really proud of the fact thatthe audio book is read by a disabled person, and for those of you who do muchaudio books and listen to it, I feel like really there's a difference, becauseI feel like in the way that she ‑‑ or her intonation, she gets it, and Ithink that is why, you know, one of the things that's important to me withdisability is to spread the love.

Andalso give the material opportunities to other disabled people, because it isnot just ‑‑ it's not about me.  I dowant to say that about my website, I also have a summary that's free for anyperson who doesn't ‑‑ who can't afford the book or (indiscernible) adisabled writer and there's also a free piece by a disabled writer, DavidOrtiz, so I really envision a lot of resources that non‑disabled folks anddisabled folks can use to really spark conversation
and reflection about this book.  Let thisbe 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 questionsto wrap this up, after which Emily will come back on for some closingremarks.  And they're two very differentquestions, but I would love your thoughts on them.

Thefirst question is how do you navigate the potential safety risk of living asyour full safe?  This is from a trans manfat disabled person.  

Thelast question to bring us home if you will is how do you channel joy in theface of so much collective grief?  

Sowith that I want to thank you and turn it over to you.  

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

>>SKY CUBACUB:  Okay.  Well, so when I started to be radicallyvisible at a young age, because I've always had something about my body or mylook, just mainly based off of my style that was unusual, like when I was achild, my hair was below my butt, and then when I was 15, I started dressingthe way that I dress now basically.  

Justmaybe a little bit less ‑‑ I made a little bit less of the stuff that Iwore.  But it was very colorful.

WhenI started dating my first girlfriend when I was 15, I wore cat ears and when Ifirst started dressing in this way, and being very outwardly queer, on thestreet, I would get a lot of comments, and I would sometimes get grabbed bycreepy guys physically, and like on the CTA, the Chicago transit here, I would alsosometimes get grabbed.  

Butthen I started wearing this makeup that looks like a tattoo, and that actuallywas a way to make myself more radically visible but also kind of act likea ‑‑ you know, a poisoned frog where it's like beautiful but you want tostay away from it because everybody was like, oh, my God, you have a facetattoo.  You must be tough, even thoughI'm very small.  I'm like five foot oneand a half.

Andlike petite, so, you know, people can physically pick me up very easily andwould sometimes do that, but having tattoos, having this makeup that looks likea face tattoo has helped me kind of create a sense of ‑‑ yeah, safety andarmor and like, you know, actually wearing literal armor and so that has helpedme be radically visible but also feel a little bit safer.

Sometimesit doesn't always work, and then I have to just kind of try to escapesituations, but generally it's been better. It was a lot worse when I was a teenager.  But I also, you know, now have cultivated theright kind of bitch face that you like walk down ‑‑ or like roll downChicago looking a little bit mean so that nobody messes with you.

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


>>ALICE WONG:  This is Alice.

Iwould say, you know, finding joy is really hard, but I think, you know, I dothink that now more than ever, when these times are so bleak and they seemoverwhelming, and they're really painful, right?  There's a lot of grief, there's pain.  You know, thinking about what's happeningwith the uprisings for racial justice and just stories of people dying andbeing sick.  

Itis really irresponsible and selfish, you know. I feel like we have to try to be very intentional and carving thattimeout and making space for pleasure and joy. And I think that's hard to do. That's easy to say.  Everybodylikes 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 myday, and that's been the biggest thing about autonomy again.  I feel like I'm doing (indiscernible)autonomy and power.  I think they'reinterrelated.

Butyeah, 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 practiceto like care for yourself and love for yourself.  So just to answer the question, I do thatthrough eating ice cream or I watch cat videos. I have this individual like direct ‑‑ like direct message threadswith 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?  

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

Youdeserve it.  Nobody should tell you whatyou 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 thinkthat's ‑‑ we all deserve that.  Weshould always tell each other that all the time.  

>>EMILY BLUM:  Wow, this was certainly atreat.  This is Emily Blum speaking.  Alice, Sky, Derrick, thank you all so much.  This was really ‑‑ I brought us joy andfor those of us who attended this felt like self‑care.  So thank you so much, Alice.

Thankyou also to all of our guests who joined us today and a big thank you to allthose 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.

Beforewe conclude, our next power series is scheduled for August 25, and will featurea conversation on the census and why the disability count is more importantthan ever.  There is a slide that showsthe power and justice 2020 census conversation. We hope you will join us August 25.

Joinour network of positive disrupters.  Ifyou're a person with a disability in the Chicago region and want to join ourcommunity, visit our website.  Become amember or a fellow in our 2021 leadership institute.

Ifyou'd like to see us continue producing accessible events like this, contributeto our program at We will be publishing this video and a recap of this event.  

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

>>DERRICK DAWSON:  Thank you.  

(Endof program.)