Finding Your Voice: Zoe on Retinitis Pigmentosa, Advocacy, and Assistive Technology
One of the things I love most about The EKO Lens is having conversations with people whose experiences remind us that there is no single story of vision loss.
In this episode, I had the opportunity to sit down with Zoe, Vice President of the American Council of the Blind Next Generation, to talk about her journey with retinitis pigmentosa, her advocacy work, and her perspective on the future of assistive technology.
Zoe’s story begins with something that many people in the blind and low vision community can understand: answers did not necessarily come right away.
“I didn't get diagnosed until 2020,” she shared during our conversation.
She also talked about growing up without consistent eye care and how her vision has continued to change over time. Those experiences shaped not only how she learned to navigate the world, but also how she eventually found community and stepped into advocacy.
From Personal Experience to Advocacy
There is something powerful about reaching the point where your lived experience becomes part of how you advocate for others.
Through her leadership with the American Council of the Blind Next Generation, Zoe is helping create community and opportunities for a new generation of blind and low vision people.
Our conversation explores what advocacy can look like when it is grounded in lived experience. It is not simply about speaking for a community. It is about making sure people within that community have opportunities to speak, lead, connect, and shape the decisions that affect their lives.
That distinction matters.
Assistive Technology Can Change What Is Possible
We also talked about the role assistive technology has played in Zoe’s education and everyday life.
For people who are blind or have low vision, technology can mean access to information, education, employment, navigation, communication, and independence. But having technology available does not automatically make something accessible.
The people who actually use these tools need to be involved in their development.
This is something we talk about often at Eko Vision Foundation: design with us, not simply for us.
As assistive technology and artificial intelligence continue to evolve, we have an incredible opportunity to rethink accessibility. But innovation should not begin with assumptions about what blind and low vision people need. It should begin by listening to them.
There Is No One Way to Experience Vision Loss
Perhaps one of the most important reminders from this conversation is that blindness and low vision are not single experiences.
Diagnosis happens differently. Vision changes differently. Access to medical care varies. Education experiences vary. The technology that works beautifully for one person may not work for another.
And our journeys toward identifying as part of the blind or low vision community can look very different, too.
That is why sharing these stories matters.
Every time someone talks openly about their experience, another person may hear something that makes them feel a little more connected, gives them a new resource to explore, or shows them another possibility for their own future.
Zoe’s story is one of those stories.
🎙️ Listen to the full episode of The EKO Lens to hear more about Zoe’s journey with retinitis pigmentosa, her advocacy with the American Council of the Blind Next Generation, and what she hopes to see in the future of assistive technology and accessibility.
Comments