What has been your journey of disability?
My journey is both visible and invisible. I was born without hands and feet, with a disability known as Hanhart Syndrome. This is one of the rarest conditions in the world, with fewer than 30 people ever being recorded as having it. Alongside this, I’m also moderately hard of hearing and wear hearing aids. As a child, I went to a performing arts school where I engaged in singing, dancing, and drama each week. I was a straight-A student who loved school and learning. My biggest philosophy was to preserve my independence. My family remembers me as a toddler saying, “I do it!” and I meant it. I adapted quickly, writing and even dressing Barbies on my own.
At ten years old, a chronic illness upended that rhythm. My education and activities gave way to constant medical testing and appointments. Seventeen years later, no treatment has worked. What I once imagined escaping has become something I live with every day. Having both visible and invisible disabilities has shaped every part of my life. It has meant re-learning independence and carrying forward the same drive to challenge myself in new ways.
“Hanhart Syndrome is one of the rarest conditions in the world, with fewer than 30 people ever being recorded as having it.”
How has your personal experience of disability shaped your path and identity?
My journey has been unique because my disability is unique. I often tell people that I didn’t see myself as disabled when I was growing up. This usually comes as a surprise to most people. I use a power wheelchair, I leverage multiple accessibility tools; I’m probably one of the most noticeably disabled people one could ever meet. But I believed that my adaptability, my mainstream schooling, and my passion to be successful made me different. I was the only disabled person that I knew when I was growing up, so my idea of disability came from movies and mainstream media. A lot of this was rooted in internal ableism; society taught me to see disability as pitiful, and since I didn’t feel pitiful, I couldn’t recognize myself in the representation of disability I had as a kid.
But disability is not a monolith, and with over 1 billion disabled people in the world, it’s the most diverse community one could ever be in. Identifying as disabled is empowering because it allows you to recognise the contrast between your abilities and limitations and hold space for both to exist in the same person. It also allows you to see disability as a dynamic life experience and one to celebrate. As I got older, I unlearned some of those ableist misconceptions of what disability is and began to rewrite how I see myself in this world.
What experiences have most shaped your path, identity, and sense of empowerment as a disability advocate?
When I developed my chronic illness at the age of 10, my life ground to a halt. I was no longer able to attend school and fell behind in my classes. This was a big disappointment as I hoped to graduate high school early, by 16. After it became apparent my chronic illness was not
going away, I was put into independent study, which meant my school sent out a teacher to my home to teach me. However, this was difficult because I was often not feeling up to learning when my teacher was scheduled to see me, and my teacher wasn’t able to drop everything to teach me at a moment’s notice when I was feeling up to studying. This meant I fell behind quickly in school and struggled to keep up.
Over time, I made little progress in my education until COVID hit when I was 22 years old. With the opportunity of studying online, I was able to excel in my work and finish school. The benefit of online education was that I could study when I was feeling up to it and log off when I wasn’t, which gave me the flexibility I needed. It also allowed me the ability to physically conserve the energy I expended on writing and leveraging heavy textbooks. As a result of online education, I completed 2 years of high school in less than 4 months and graduated with my diploma. This changed my life and allowed me to continue building my life remotely. I enrolled in an online community college and got 3 associate’s degrees in 2 years, and transferred to Arizona State. I’ll be graduating with my Bachelor’s degree with honors in December.
“Identifying as disabled is empowering because it allows you to recognise the contrast between your abilities and limitations and hold space for both to exist in the same person.”
What was the turning point or experience that set you on your advocacy journey?
When COVID hit, I think a lot of us were focusing on reevaluating how we see life and the world. During that time, I had the opportunity to learn about disability rights, which was something I didn’t have the opportunity to learn about in K-12. It felt like something clicked, and the activism that came before me to allow me to even go to school allowed me to understand my place in the world. I resolved to share my story and advocate for a world in which we think outside of the box so that everyone has a chance to achieve their dreams.
I began building my thought leadership in college as a member of the Associated Student Government. During that time, I leaned into my identity as a disabled, first-generation student to advocate for students like myself. In my first semester, I began advocating for disability inclusion in the Associated Student Government (ASG), first as Legislative Affairs Senator and later as President. During my time, I worked to draft a Disability Inclusion Resolution for my school to embed disability rights in curricula and monitor disabled student outcomes.
I refined my resolution for broader impact and presented it to the statewide level, where it was passed unanimously. It now impacts two million students across 119 colleges by embedding accessibility into institutions, ensuring lasting change for future generations. This work really shaped my voice as a student and disability advocate. Since then, I’ve had the opportunity to intern at Amazon, education technology companies, and the Department of Labor’s Office of Disability Employment Policy. I’ve also had the honor of working at the Center for Disability Inclusion, where we support companies interested in building disability inclusive business practices.
My work has been recognized with the Obama Foundation’s $50,000 Obama-Chesky Voyager Scholarship for Public Service and the California Community Colleges Chancellor’s Office Student Leadership Award. I’ve also had the incredible opportunity to present my work at a variety of institutions, including Columbia University and NYU, and lead national conversations on how we can think about accessibility as more than compliance.
Growing up and pursuing your studies, what barriers did you face, and how did you overcome them?
Online education is not always easy, because it means you’re often learning by yourself and studying independently. The challenges I faced in K-12 were about access. In higher education, those access barriers no longer existed for me, but that didn’t make college easier; it just gave me the freedom to choose how I learn. I often saw my disability as the thing that held me back from succeeding, but I realize now that success is about an environment that’s conducive to what you need.
As a student in community college, I was blessed enough to receive mentorship from my professors and all the support I needed from my school and advisors to be successful. I was nervous about going into college, but I found that being transparent about my challenges allowed me to get what I needed and build a community along the way. The President of my community college is coming to Phoenix to celebrate my graduation!
What motivates you to keep going when things get tough, and how have you found your own voice through your work?
As I continue advocating, I meet so many disabled students who want to pave their way in life, but don’t get the support they need. I see myself reflected in them when they reach out, ask for coffee chats, and work on their own advocacy efforts. Advocacy can seem like a glamorous effort with a lot of name-spotlighting, but in the end, it’s students and people like us who band together to make a difference. I’m motivated by looking back to see how far we’ve come as a society in integrating disabled people into our culture, and I’m excited to see what progress we will have made in a few years from now. I think it’s important to know how to build a community when you’re advocating, otherwise it can be isolating. But change doesn’t happen in a vacuum; it happens one step at a time. What also keeps me going is my understanding of how privileged I am to have access to equitable education, as this wasn’t always the case. Ultimately, what keeps me going is knowing that when I finish school, I can devote more time to advocating for policies that can give other students going through what I went through what they need to accomplish their goals.
“Change doesn’t happen in a vacuum; it happens one step at a time…”
What do you see as the most urgent issues for disability inclusion in education and the workforce today?
The most urgent issue right now is that the flexibility created during COVID is disappearing. Remote education and work opened doors that disabled people had been begging to have for decades, but these options are now being rolled back under return-to-office and in-person mandates. What was a crisis solution proved that productivity, learning, and collaboration can happen virtually when leaders prioritize accessibility. But instead of building on that progress, institutions are retreating to old models that exclude disabled people who can’t consistently commute, navigate inaccessible campuses, or meet rigid attendance requirements.
The barrier was never technology; it was a lack of institutional will. By pulling back on remote and hybrid models, education systems and employers risk reinforcing systemic exclusion, pushing disabled people back out of classrooms and workplaces that had finally
become accessible. The urgent task now is ensuring that remote and hybrid structures are not seen as temporary perks but as core accessibility practices that should remain permanent.
How do you think technology can be used to promote greater inclusion—both in the business community and for people with disabilities more broadly?
Technology can drive inclusion if it’s treated as infrastructure, not an add-on. For business, that means making digital accessibility non-negotiable: every platform, website, and internal system should meet accessibility standards from the start. Companies should treat this like any profitable initiative: by leveraging analytics to track equity outcomes. For example, who’s advancing, who’s being left out, and design interventions based on real data.
For disabled people more broadly, technology is a bridge to autonomy. But the bigger opportunity is cultural: technology normalises inclusion when it’s built for everyone. If accessibility is baked into product design and business operations, it stops being a “special accommodation” and becomes the default way we live and work.
“Technology normalises inclusion when it’s built for everyone.”
Is there a particular technological tool, platform, or resource that makes your life easier or more accessible?
Yes, over the summer, I delved into the WCAG (Web Content Accessibility Guidelines), which were created by W3C and the founder of the internet. This concept has been around for decades, and most national laws require digital accessibility to be defined through WCAG. The guidelines make technology more usable by setting a clear baseline for accessible design. It outlines how digital platforms should be built so they function with assistive technologies like screen readers or keyboard navigation. Its strength is consistency. When organizations follow WCAG, they allow disabled people to engage more fully without encountering constant barriers.
What advice would you share with young women or girls with disabilities who are looking to advocate for themselves or others?
The most important advice I’d share is to put yourself forward without self-rejection. Too often, young women with disabilities assume they won’t be chosen or that their story isn’t enough, and they talk themselves out of opportunities before anyone else even sees them. I’ve applied to countless scholarships and fellowships, and while I didn’t win all of them, I did win some of the most competitive ones out there. That only happened because I pressed “submit” instead of deciding in advance that I wasn’t qualified.
If you have a goal, treat the act of showing up as success in itself. The role of gatekeepers is to make selections, not for you to filter yourself out. Every time you take that step, you create the possibility for doors to open. The biggest thing I see young girls say is, “I have no chance, why would they pick me?” To that I always say, “Why not you?”
“If you have a goal, treat the act of showing up as success in itself.”
What has empowered you most as a woman with a disability, and how can others find their voice?
What has empowered me most is realizing that my disability functions as a lens for innovation. Once I began framing disability as a strength rather than a deficit, new opportunities opened up. For others, the path to finding their voice begins by connecting to the long history of
disabled innovators. Many of the tools that shape daily life, like touchscreens, typewriters, and the bike, exist because disabled people created them to navigate inaccessible environments. Disabled voices are central to building the systems and technologies that benefit everyone.
How do you take care of your own wellbeing amid ongoing advocacy work?
A lot of people think improvement means cure, but chronic illness doesn’t work that way. What has changed for me is not that my condition disappeared but that I’ve learned how to live inside its boundaries. That means building routines and environments that support me instead of pushing against me, and knowing when I need to slow down. Rest is part of how I function. I make sure to get eight hours of sleep each day, and I set aside at least one day a week to recover. Those habits don’t erase the illness, but they allow me to sustain my work and life without burning out. Adaptation, not cure, is what makes life possible.
How can people follow or support your work?
You can connect with me at my website: https://JessicaL.me, or on all social media platforms at @RealJessL.
