Disability Visibility: First-Person Stories from the 21st Century

Disability Lead
Aug 7, 2020 · 8 min read
Sky: Filipinx, eclectic clothing & makeup. Alice: Asian, shaved head, uses ventilator. Derrick: black, bald, beard & glasses.
Three side-by-side Zoom screen captures: Left, Sky; Center, Alice; Right, Derrick

In Disability Visibility, the latest installment in our Disability Power Series, we aimed a spotlight on some of our favorite human beings: Alice Wong — editor of the recently released Disability Visibility, a phenomenal collection of 37 essays by contemporary disabled writers — and Sky Cubacub — founder and designer of Rebirth Garments, a colorful, eclectic, and accessible clothing line. To moderate this discussion, we turned to none other than Advancing Leadership 2020 Fellow Derrick Dawson, who has been tirelessly dismantling systemic racism as co-coordinator of Chicago Regional Organizing for Antiracism (CROAR.)

We were so dazzled by this powerhouse group that we forgot to record the first 10 minutes of the discussion. Thankfully, our trusty CART transcriber provided us with a transcript, so we were able to include the missing dialogue in the detail section below the video, now (mostly!) available on our YouTube channel.

This Disability Power Series discussion can honestly be summed up with a single quote from Alice: “As disabled people, we don’t come together enough and that when we do, there’s a real passion — It’s like the theme of this Power Series. There is real power when disabled people get together.

For a more in-depth recap (plus a bonus!), read on.

DISABILITY VISIBILITY (the book)

Alice describes Disability Visibility as “a tight, curated collection” that’s “chock full of power” and “an amazing cross‑section of this incredibly rich and diverse disability community.” Moreover, “The fact that [the contributors] are talking about their lives on their own terms, unapologetically, is something that is really beautiful.”

Via her website, Alice offers a free plain language summary — written by Sara Luterman, a disabled writer — as well as a free discussion guide — again, written by Naomi Ortiz, another disabled writer. “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,” Alice says, “Let this be a springboard to dive in more and just, you know, splash around.”

Sky, whose essay is featured in the book, chimes in with an enthusiastic endorsement for the audiobook version. “Alice reads her own introduction and I almost started crying because it was just so exciting to me. I was like, this is the best thing that has ever happened. I truly believe that Alice Wong is a national treasure.

The colorful, geometric cover of Disability Visibility: First-Person Stories From the 21st Century edited by Alice Wong

REBIRTH GARMENTS

Sky initially envisioned multiple clothing lines, but in the end, they focused on a single, inclusive concept. “I decided I should just make this clothing line be […] 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.”

They currently offer a variety of accessible face masks, the year’s literal must-have fashion accessory. “I’ve been making face masks with the clear window panels for D/deaf and hard of hearing folks,” and masks with “different attachment styles [for different physical needs], 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.”

PASSION AND PURPOSE

One thing that’s clear from this discussion is the passion Alice and Sky each have for their work.

“I get so much joy from my models and from the people that I work with,” Sky gushes, “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 gender-affirming garment, and then getting to create that and see the look on their face, how their attitude shifts, how their whole confidence might completely change.”

Alice’s work is driven by the desire to create her ideal utopia. “The work I create is kind of a way of building the future world that I want 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.”

On that note, she encourages us to reflect on our own journeys. “How we get closer to goals towards 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.”

Sky agrees. “I delved into my artwork 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 can kind of can keep me going.”

Sky is extra colorful! Giant pink earrings, blue lips, black geometric pattern on right eye, & blue, pink, purple headpiece.
Sky is extra colorful! Giant pink earrings, blue lips, black geometric pattern on right eye, & blue, pink, purple headpiece.
Sky shows off their pink plexiglass queer crip-symbol earrings, available in their Etsy shop

SUPPORTING PEOPLE WITH DISABILITIES

Alice has concrete advice for abled people who’d like to be allies. “Support our works, support work like Sky’s, support this organization — ADA 25 Advancing Leadership.” She also encourages them to amplify the voices of people with disabilities. “Pass the mic — If there’s an event that your organization or workplace is having on diversity and inclusion and you notice there’s no disabled people in it, you have an obligation to say, ‘Hey, uh, something’s missing here.’” She adds, “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.”

“PASSING?” PASS.

Sky believes we should all present our full selves to the world. “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,” Sky says passionately. “If we didn’t all have the pressure to pass and stay with 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.”

“It’s like the theme of this Power Series. There is real power when disabled people get together.

MAKING SPACE FOR JOY

In times of pain and grief, self-care tends to take a backseat, something Alice discourages. “I feel like we need to kind of be very intentional and carving that time out and making space for pleasure and joy. […] You deserve it. Nobody should tell you what you have to do in terms of what’s expected. You should be able to push back and say, no, this is what I needI’m going to sleep in tomorrow — I need to nourish myself — I’m going to treat myself. And I think we all deserve that. And we should always tell each other that all the time.”

And which spare-time activities bring Alice joy? “I do that through eating ice cream — or watching cat videos,” Alice says. Then, with a gleam in her eye, she admits she finds joy in dishing with friends in private chats. “We can be really petty. Be just, like, really salty about things. It’s just, like, having that safe space to just, like, say whatever I want. […] That gives me joy.”

Alice has a peaceful expression and is smiling. She wears dark clothing and has a ventilator attached to nose.
Alice has a peaceful expression and is smiling. She wears dark clothing and has a ventilator attached to nose.

BONUS!

Sky was kind enough to meet with us for a bonus interview to answer a couple of additional questions from the audience that we didn’t have time to get through during the Power Series.

How do you deal with situations where others try and diminish your anxiety?

As Sky’s dad lay on his deathbed, a hospice nurse attempted to explain Lorazepam to Sky, a drug Sky’s dad was taking for his treatment. When Sky reassured the nurse they were familiar with it since they had taken it for their panic and anxiety disorder, they were met with harsh judgment. “I was horrified because I met her for probably 30 seconds beforehand. All she knew about me was that my dad was dying,” recalls Sky incredulously. They handled it by removing themself from the situation. “If it’s a person that I don’t care to have any sort of relationship with, I will just walk away from them, because it is too upsetting to me.”

How are you able to be your whole self?

“It’s a journey. I think I didn’t have a choice when I was younger because I was very — It was very hard for me to cope with my anxiety and panic disorder, so owning it was just, like, the only option.”

Though Sky now uses coping mechanisms to help control their panic and anxiety disorders, they still refuse to hide their disability. “I still own it because I want to de-stigmatize it. And now my work is a lot about education. So I will sit and talk to people about anxiety and be like, yes, it is normal.”

Another way Sky embraces their full self is, of course, through their style. “In seventh and eighth grade, I tried to fit in and look, like, you know, look, like, as CIS and straight as possible by trying to fit in and wear, like, Juicy Couture and Coach bags and stuff like that. But then I felt, like, very uncomfortable in my body.” Emboldened by friends in high school, Sky found the courage to be their true self and developed the bold fashion sense we all know and love today!

STAY CONNECTED

Disability Visibility

Website www.disabilityvisibilityproject.com
Book (all formats) Disability Visibility
Podcast Disability Visibility Podcast
Twitter @DisVisibility
Twitter @SFdirewolf
Facebook @DisabilityVisibilityPodcast

Rebirth Garments

Website www.rebirthgarments.com
Etsy shop www.etsy.com/shop/RebirthGarments
Facebook @RebirthGarments
Instagram @RebirthGarments
Twitter @RebirthGarments
TikTok @RebirthGarments

Thank you to our Disability Power Series sponsors:

  • Influencer: Chicago Public Library
  • Disruptor: Ann Manikas

For sponsorship opportunities regarding the Disability Power Series, please contact Alex Perez-Garcia, aperezgarcia@ada25advancingleadership.org. You can support our work by going to ada25advancingleadership.org/donate.

ADA 25 Advancing Leadership envisions people with disabilities leading with power and influence for full participation and equal opportunity as a vital part of our civic fabric. Our diverse network of leaders with disabilities are using their power to create a just, equitable, and inclusive society. To learn about becoming a member or fellow, please visit https://www.ada25chicago.org/applications.

Power. Influence. Change.

Nearly 1 in 4 Americans has a disability, yet individuals with disabilities are vastly underrepresented in professional and civic leadership roles. Disability Lead imagines a Chicago region where everyone has access to lead with power and influence.

Disability Lead

Written by

We connect Chicagoans with disabilities to leadership positions throughout the region. Learn more at disabilitylead.org

Power. Influence. Change.

Nearly 1 in 4 Americans has a disability, yet individuals with disabilities are vastly underrepresented in professional and civic leadership roles. Disability Lead imagines a Chicago region where everyone has access to lead with power and influence.