April 2026
Hello
My name is Darlene Laibl-Crowe, and I am 67 years old. I live with Usher Syndrome, which is a combination of Retinitis Pigmentosa (RP) and severe to profound deafness. I wear bilateral hearing aids, and my journey of sight loss has truly been a roller coaster.
I was first diagnosed with Usher Syndrome at age 28, but my hearing challenges began much earlier. At six, I was told I had congenital inner ear nerve deafness and received my first pair of hearing aids at age eight. A former third-grade classmate once recalled that our teacher told the class I couldn’t talk or hear, which made my classmates curious about me. Over time, though, they grew used to having me in class.
Speech lessons became a part of my life for three years after I received my hearing aids. While these lessons helped, I still struggle with certain speech issues, especially with letters that sound similar, such as b, c, d, e, m, n, o, p, q, t, v, and z.
After my RP diagnosis, I retained central vision for 22 years. However, at age 50, my vision changed dramatically. I found myself unable to do many things I used to, and unfortunately, the state agency didn’t seem equipped to support me during this transition.
Frustrated, I insisted on getting either a job or returning to school, wanting something positive to focus on. I enrolled in a college certification program, but the realities of my vision and hearing loss quickly set in. Unlike my previous college experience, I now struggled with light interfering with my computer work and couldn’t hear my professors clearly in class.
Reflecting back, several issues became apparent:
• Professors often spoke facing the whiteboard instead of the class, making it difficult for me to hear them.
• The computer lab had windows behind the computers with no blinds or curtains, causing significant glare. When I asked for help, others simply didn’t understand my needs.
• I didn’t fully understand my own needs at the time, and neither did the blind services agency. I started exploring ways to adapt my computer to my visual requirements and found a supportive online community of people with similar experiences, which was incredibly empowering.
• Through these connections, I learned about the Helen Keller National Center in Sands Point, New York. I advocated to attend, and the state funded my eight-month stay for evaluation and training.
• The training, connections, and advocacy awareness I gained there equipped me to return to Florida and begin advocating for various organizations throughout the state—a commitment I continue today.
• I look forward to sharing more about my journey. I invite you to respond with questions, share your own experiences, or simply join the conversation.
• To those who are not visually impaired, please feel free to ask questions, share comments, or even offer suggestions. Our goal is to ACCEPT, ADAPT, and MOVE ON!
To be continued…