When Leaders Embrace Their Disabilities, Culture Shifts
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Welcome back to Curious Constructs, where I seek to understand and challenge the barriers that prevent us from bringing our full, authentic selves forward — whether those barriers are personal or systemic.
Rethink This: Why Don’t Disabled Leaders Identify as Disabled?
“But I’m not as disabled as they are.”
Many of our leaders in the United States are aging. Some use hearing aids, mobility devices, or have chronic pain. But few self-identify as disabled.
When I served as the U.S. Special Advisor on International Disability Rights at the State Department, I noticed this pattern often. Political figures and behind-the-scenes government staff alike would describe themselves as having a “chronic health concern” rather than calling it what it is — a disability.
Why is that?
If more leaders with disabilities openly identified as such, we could foster stronger allyship and make greater progress on disability-centered policies. But there remains a sense of shame attached to the label of “disability” itself — as if identifying with it means belonging to an “other” group that people often distance themselves from.
The Rejection of Disability Identity
When I talk to people about disability, I often hear comparisons — an urge to rank or measure whose disability is “harder.” But each person’s experience is their own. We don’t need to quantify how disabled someone is, or who is “more” or “less” disabled.
We see this pattern in many of the legacy medical models used by countries around the world, too. Like in Iraq, where people are assigned a “percentage” to determine disability pensions — people are given full insurance if they have a “loss of working capacity” of at least 91%, and partial coverage over 35%. A similar classification system also exists in Russia.
We need to move away from the idea of disability as something to measure or minimize — and start embracing it as an identity. This rejection often stems from how society defines disability — as a deficit, not a dimension of human experience.
How Do We Form Our Disability Identity?
Those of us in the disability community often say it’s the only community you can join at any time. But people don’t always see it that way.
For many of us born with a disability or who gained one early in life, it’s been a big part of who we are.
For people who gain a disability later in life, that’s sometimes not the case. They haven’t lived it as part of their journey, so they tend to see it more as a health condition — something to fix, manage or “get rid of.” In fact, some who gain a disability later in life actively resist making it part of their identity.
Of course, not all disabilities are experienced the same way. For people with chronic or degenerative illnesses the focus is often on treatment and survival. But for others, disability isn’t about morbidity — it’s a different way of moving through the world.
I think of a dear friend and advisor who’s losing his hearing. He needs a hearing aid but hesitates, because to him, it symbolizes aging. Imagine if he took a step back and saw it as part of his new reality. How would that change how he sees the world? If he saw it as part of his identity, he might even connect with the hard-of-hearing and Deaf communities. Doing so could offer new perspectives and insights that inform both personal relationships and professional decisions. Right now, though, he doesn’t see that connection.
Transforming Workplace Culture through Disability Identity
Seeing disability as an identity, rather than a health issue could transform workplace culture — and disability policy along with it. If more leaders identified as disabled, it would break down a lot of barriers for employees with disabilities — whether that’s allowing employees to feel comfortable sharing their non-apparent disability or normalizing asking for accommodations.
Today, requesting accommodations is often time-consuming and frustrating. In my own experience at the State Department, requesting accommodations was challenging and I often felt alone in the process — especially because I felt like there wasn’t anyone who understood how essential accommodations were to me and my work.
But if leaders set the example, we could shift the culture. Employees would be able to bring their whole, authentic selves forward, and accommodations would no longer be seen as “special requests,” but as standard tools that help every employee do their best work.
Disabled Leaders in Government
Historically, even our most prominent leaders with disabilities have avoided the label. President Biden, who had a stutter, often framed it as something he “overcame.” JFK managed chronic illness and FDR used a wheelchair. Yet neither publicly identified as disabled.
Imagine how different our workplaces — and our society — might look if these leaders had embraced their disabilities as part of their identities, and not as a limitation that needed to be hidden. Their visibility could have empowered others to do the same, breaking down barriers through leading by example.
Moving Toward Disability Pride
The beauty of disability is that it’s an identity that connects us — at any point in life, anyone can become part of this community and share experience.
But this mindset shift won’t be easy — 88% of people with non-apparent disabilities still choose not to disclose them, according to Harvard Business Review. I’ve also hosted In The Dark sessions where participants with non-apparent disabilities told me they didn’t feel comfortable revealing their disability, fearing the stigma they might face from their colleagues.
But if more of our leaders began to identify as disabled, it could open doors for millions of others to do the same — inclusion could become the norm, not the exception, in our workplaces and beyond.
Up Next: Further Reading, Everyday “Blind Spots”
Read on for a glimpse into my week, including a conversation I had with the CEO of Henry Schein about disability employment and curiosity, along with a new section where I share my own experiences that highlight how absurd — and telling — assumptions about disability can be.