Stacey Park Milbern

1987-2020
By Shay Dawson

Stacey Park Milbern was born with congenital muscular dystrophy (CMD). When she moved from Seoul, South Korea to North Carolina as a young child, she first realized she was a person with a disability 

Milbern worked to find community, and became dedicated to disability justice activism as a teen 

Eventually moving to California, Milbern made waves in the disability justice movement through her organizing and activist efforts


“I would want people with disabilities twenty years from now to not think that they’re broken. You know, not think that there is anything spiritually or physically or emotionally wrong with them…And not just people with disabilities but queer people, gender non conforming folks, and people of color. And all of the people I think that society really pushes down and out. And just to know that we are so powerful,” Stacey Park Milbern, Disability Visibility Project at StoryCorps San Francisco on April 14, 2017


Early Life 

Stacey Park Milbern was born in Seoul, South Korea on May 19th, 1987. She was born to her white-American father, Joel, and Korean mother, Jean. She had two siblings, Jessica and David. Her father was in the United States Army, which led the family to move from South Korea to Fort Bragg, North Carolina. Milbern identified early on as both mixed-race and queer. Milbern was also born with congenital muscular dystrophy (CMD). Though she did not label herself disabled as a young child, many experiences built her awareness of her body and the condition she experienced. In an interview for the Disability Visibility Project, she stated: 

“I grew up…not knowing specifically what [CMD] was, so I walked until about middle school and then started using a manual chair and then scooter and then in my high school I used a power chair. So much of my childhood memories, I think are really about surgeries and going to physical therapy. But as strange as it sounds, throughout that whole time I never really identified as being a person with a disability. So I might have said… described myself as someone who has challenges,” (Milbern 2017).

Milbern often described her experiences as a child in interviews realizing she was different from her non-disabled peers. She recalled that, while she struggled with the ability to remain upright while walking due to CMD, her classmates struggled with “boys and bras and all of these girl things”; ultimately, Milbern concluded: “We have a totally different reality.”  (Milbern, Genzlinger 2020).  To assist her, she eventually used a trach (a plastic tube used to keep open a windpipe) and ventilator (a device that assists with breathing), both of which Milbern credited as helping her eventually identify as a disabled person (Milbern 2017). 

Milbern’s newfound understanding of her identity prompted her to engage with other disabled individuals in her community. Experiences such as involvement within a high school national youth leadership program granted her the opportunity to speak to people that were both disabled and in positions of power. These community leaders discussed the history of the disability rights movement, which empowered a young Milbern to dedicate her efforts to creating lasting change within her own local community (Milbern 2017). At the age of 16, her aims were fully realized when she served on several North Carolina commissions, worked to have disability history added to her high school’s curriculum, and maintained a blog that explored disability rights (Genzlinger 2020). Additionally, she co-founded the North Carolina Youth Leadership Forum which served young people with disabilities (Google Arts and Culture). She was also appointed by the Governor of North Carolina to the North Carolina Statewide Independent Living Council (Google Arts and Culture).

At the age of eighteen Milbern, alongside other disability rights activists, coined the term disability justice. This concept is a “...framework dedicated to ensuring the perspectives of traditionally marginalized groups within the disabled community weren’t left out of the fight for disability rights,” (Google Doodles). In 2009, Milbern graduated from Methodist University with her bachelor’s degree. During those four years, she participated in the American Association of People with Disabilities’ (AAPD) Summer Internship Program (Google Arts and Culture). She eventually moved to California to live on her own for the first time at the age of 24. In 2015, she graduated from Mills College in Oakland with a masters degree in business administration.

The Disability Justice Movement

When Milbern first moved to the Bay Area of California in 2011, she founded the Disability Justice Culture Club (DJCC). This club worked together to “[organize] and [promote] Milbern’s vision of an inclusive disability justice movement,” (Jones). Milbern also renovated her home to host DJCC gatherings (Disability Visibility Project 2020). The Bay Area held special importance in the disability rights movement. Beginning in the 1960s, disabled activists organized at area schools, such as UC Berkeley, and also organized major actions in San Francisco that pushed forward the disability rights movement, such as the 1977 504 Protest (Berkeley, National Park Service). Coming to the Bay Area, Milbern joined a community with a decades-long commitment to centering disabled community members in the fight for equity.

During 2020, the first year of the spread of COVID-19,  Milbern recognized the way that disabled and unhoused people were disproportionately affected. Alongside members of the DJCC, she set out to provide resources to homeless community members to protect themselves from COVID. The group developed homemade kits consisting of gloves, vitamins, sanitizer, and masks and distributed them within various homeless encampments (Genzlinger 2020). 

In 2014, Milbern was named a member of the President’s Committee for People With Intellectual Disabilities by President Barack Obama. Milbern was also a part of a “disabled, fat, older, queer,” collective called Power to Live (Disability Visibility Project 2020). This campaign came about following Pacific Gas and Electric, the California utility, shutting down power to thousands of households in fall of 2019 as a means of combating wildfires (Genzlinger 2020). Power to Live sprung into action, distributing medical supplies, generators, ice and, ultimately, making certain that those with ventilators and other medical devices had access to power (Genzlinger 2020, Jones). By this point, Milbern had become a leader in the disability justice movement – not only in California, but beyond.

One of Milbern’s most prominent projects included serving as the Impact Producer for the 2020 Netflix documentary Crip Camp: A Disability Revolution directed by Jim LeBrecht and Nicole Newnham. The film centers “the story of an upstate New York summer camp in the early 1970s that served as a launching pad for the then-burgeoning disability rights movement,” (Jones). Crip Camp was widely celebrated and ultimately nominated for an Oscar. As Impact Producer, Milbern developed a virtual speaker series to promote the film. Milbern’s friend and additional Impact Producer of the film, Andrea LaVant, spoke to the value of her insights:  “She focused our campaign towards those in the disabled community whose important contributions and teachings were often overlooked…She would come up with ideas for our impact campaign that seemed outlandishly beyond imagination or possibility, and then pull it off in splendid fashion,” (Genzlinger 2020).

A trailer for the 2020 Netflix Documentary “Crimp Camp: A Disability Revolution”.
“CRIP CAMP: A DISABILITY REVOLUTION | Official Trailer | Netflix | Documentary.” YouTube, March 11, 2020. https://www.youtube.com/watch?v=XRrIs22plz0.
 

Milbern’s Legacy as “Crip Ancestor”

Following a lifetime of work dedicated to advocating for the rights and recognition of people with disabilities, Milbern passed away from surgical complications on what would have been her 33rd birthday May 19th, 2020. Despite facing health issues in the months prior, she still remained staunchly committed to assisting those amidst the pandemic. Many expressed their gratitude for her work after her passing, creating and using the hashtag “#StaceyTaughtUs” (Genzlinger 2020).

Amid all of the groundbreaking speaking events, organizing, and Disability Justice activism Milbern spearheaded, she also wrote extensively about “crip ancestors”. In a Disability Visibility Movement blog post, Milbern wrote: 

“I think about crip ancestorship often. It is tied to crip eldership for me, a related but different topic. So many disabled people live short lives, largely because of social determinants of health like lack of healthcare, housing, clean air and water, or having basic needs met. … I do not know a lot about spirituality or what happens when we die, but my crip queer Korean life makes me believe that our earthly bodyminds is but a fraction, and not considering our ancestors is electing only to see a glimpse of who we are,” (Milbern 2019).

Now, Milbern has become one of the ancestors she mused upon– serving as a guiding light for generations to come. Her impact is undeniable, and her life is celebrated by many. She advocated for those in her community who were often underserved or overlooked, even when their experiences differed from her own. Milbern paved a path upon which other queer, disabled people of color can continue to forge. Milbern continues to be celebrated within her own community, and a U.S. quarter featuring Milbern will also enter circulation in 2025 as part of the US Mint’s American Women Quarters Program.

Stacey Milbern and Patty Berne discuss issues of accessibility and concepts of universal design* (*making the world a more accessible place for everyone; including, but not limited to, those with disabilities). The pair also discuss their own identities and lived experiences as people that are disabled.
“My Body Doesn’t Oppress Me, Society Does.” YouTube, May 19, 2017. https://www.youtube.com/watch?v=7r0MiGWQY2g&t=2s.

Primary Source Analysis Strategies

Crip Camp Trailer (Video) 

Caption: A trailer for the 2020 Netflix Documentary “Crimp Camp: A Disability Revolution”. 

Primary Source Analysis Questions: 

  1. What is the first thing you notice when watching this trailer? 

  1. What do you wonder about the individuals featured in this documentary?

Caption: Stacey Milbern and Patty Berne discuss issues of accessibility and concepts of universal design* (*making the world a more accessible place for everyone; including, but not limited to, those with disabilities). The pair also discuss their own identities and lived experiences as people that are disabled.

Primary Source Analysis Questions: 

  1. What from this video did you find impactful? Why? 

  1. What does watching this video help you better understand about Stacey Park Milbern?

Educator Notes

This resource outlines different lenses that students can examine through primary resources. There is no specific order to use the columns in. The questions students develop through their examination are meant to encourage further research and curiosity. Educators can then propose other activities (as outlined in the resource) that help students further contextualize different - but related - primary sources. 

This is a blank version of the previous link. Educators can create their own specific sample questions (most likely based on the medium of the primary source to have students answer in each column), or simply have students fill out this document with the guidance of the original document.