Originally posted on Forbes EQ
On February 24, 2023—eight days before her sudden passing—I had the pleasure and privilege of speaking with one of the biggest civil rights leaders of our time, “the mother of disability rights,” Judy Heumann. Judy is perhaps most famously known for being one of the leaders of the 504 Sit-In, a movement which led to the first federal civil rights protection for people with disabilities.
As is the case for many others, learning about Judy's story and the history of the 504 Sit-In was the first thing that made me feel pride in my disability identity. Our February meeting was my second time speaking with Judy, but my first time sharing my disability story with her—not something I have always been comfortable discussing. I introduced myself as a neuroscientist, the Founder/Executive Director of the nonprofit organization Social Creatures, and Co-Founder of Historicons. Then I told her that I was born with Russell-Silver dwarfism.
As our meeting was taking place on Zoom—where my small stature is particularly well-disguised—Judy, not one ever known for being shy, promptly asked me to stand up so she could assess my height.
“I was talking to a friend of mine the other day, who is a wheelchair user,” Judy shared, while I stood up. “And she was telling me that people treat her very differently when they don’t know she’s in a wheelchair. When she goes to a meeting [in-person] and they see her, they treat her very differently.”
I quickly nodded in acknowledgment of a shared experience. In 2020, the pandemic shifted my work from a bustling commute to a New York City university (intermixed with lots of traveling to national and international conferences), to a much less exciting morning commute from my bed to my desk. My days became (and still are) dominated by video conferencing with others from afar. For the first time in my life, a huge portion of social interactions could occur without fully revealing my physical differences. That also meant that, for the first time in my life, I did not contend with unwanted staring, or expressions of surprise or confusion when I entered a work setting with unfamiliar people. I was no longer mistaken as an undergraduate student, rather than a PhD-holding researcher and lecturer. And I was no longer receiving unsolicited questions or comments about my age, height, or medical history.RO
If you asked me about experiencing these sorts of interactions prior to the pandemic, I likely would have told you that they happened frequently, but they no longer bothered me. So I was surprised (and even guilty) when, in the midst of a stressful global pandemic, my days suddenly felt lighter in a way. I was not having to expend as much energy to prove my status or competence in the workplace, to help people feel comfortable around me, or to quell their curiosity about my visible differences. I did not feel pressure to turn the stares I received into productive conversations about disability; I wasn’t even getting stared at anymore. I did not have to quickly decide how much (if any) private information I felt comfortable disclosing when a new person asked me about my height or medical status. The ability to hide my physical differences behind my computer taught me how much emotional labor I was previously performing on a daily basis, just to be able to do my job.
But on the flip side, something in me felt as though I was hiding a part of my identity instead of bringing my whole self to the workplace. I also soon began dreading the reactions I would receive when it would come time for me to meet all the coworkers I “e-met” on video calls during the pandemic but had not disclosed my disability to. Would people’s reactions be more extreme than if I had just disclosed my dwarfism in the first place? (In some instances, this absolutely turned out to be the case.)
The researcher in me couldn’t help but chuckle at the realization that I was living some sort of within-person experiment on how society so often creates experiences of disability more than the medical aspects of the disability itself.
I explained this all to Judy, admitting that the move to remote work was initially a welcome break from managing people’s expectations and emotions around my disability, but that it left me feeling inauthentic and disconnected from myself.
“I think honestly you should consider always introducing yourself as disabled,” Judy offered to me at the end of our discussion. She went on to explain her position more fully, arguing that disability disclosure and the intent behind it is not only important for disability representation, but an important learning moment for nondisabled people. She stressed that disability disclosure becomes especially important when coming from someone with my professional background and position of privilege as a leader in my respective organizations. I have a voice and a seat at tables that many do not.
Judy’s suggestion initially, admittedly, made me feel a bit uneasy. I have not always been comfortable talking about my disability with everyone, and the decision to disclose one’s disability is undoubtedly a highly personal one. Not everyone has the option to hide their disability, for one thing. And concerns of stigma and discrimination against individuals with disabilities in the workplace are incredibly valid. Can all disabled individuals live comfortably as our authentic selves in the workplace? Or does that mean facing unwanted consequences from a society that is not necessarily accepting or educated in what it means to have our identity?
Despite these lingering questions of mine, Judy’s message was clear: Disabled leaders are in positions of privilege that often uniquely shield us from the same degree of workplace discrimination faced by others with disabilities. We have a high level of control over managing our accommodations and setting our workplaces’ cultures around disability inclusion. As such, we should wield our privilege as leaders to make disability visible in everyday settings. But perhaps even more importantly, disabled leaders are uniquely positioned to educate nondisabled leaders (and others in general) on the importance of disability inclusion, on how to create create safe environments for employees to disclose their disabilities, and on how to nurture a workforce that does not discriminate against or create undue emotional labor for disabled individuals.
The more Judy’s points sank in, the more I realized that they directly aligned with Historicons’ mission to build pride and allyship through representation, so everyone feels good in their own identity and knows they belong. Representation matters and it starts at the top. So while publicly disclosing my disability removes the invisibility cloak that video conferencing provides me in the workplace, I have ultimately decided to heed Judy’s advice. Because at the end of the day, making my disability visible is crucial not only for achieving the change that I want to see in the world, but also for continuing the extraordinary legacy of Judy Heumann who tirelessly fought to give me a seat at the leadership table in the first place.
Words by Rose Perry, PhD
