Finnish man with rare genetic disorder shares how he embraces life without sight or hearing

A Finnish man living with a rare genetic condition that has left him nearly blind and deaf is sharing his story to challenge perceptions of disability, *LRT.lt* reports. Aarne Pirkola, 38, spoke at a forum in Kaunas about his active life—traveling, swimming, reading, and running a business—with the help of tactile sign language interpreters and adaptive technologies.

Pirkola’s vision and hearing loss stem from Usher syndrome, a genetic disorder that often causes progressive blindness alongside congenital deafness. Though he could see as a child, his vision deteriorated over time, leaving him with only tunnel-like peripheral sight today. “Everything started when I was a child. Back then, I could still see, but as I grew, my vision weakened, and my hearing worsened too. Eventually, I became completely blind and deaf,” he explained.

Despite these challenges, Pirkola refuses to let his disabilities define his life. “I take pride in being deafblind, in my identity and our culture,” he said. “I’m learning tactile sign language and Braille to prepare for the day I lose my vision entirely. But I want to say—I live a full life, and I enjoy it.”

His journey hasn’t been easy. As a teenager, he struggled with the reality of his worsening condition, particularly the loss of hobbies like ice hockey and the realization he would never drive. “At 12, it was hard to decide what I wanted to be when I grew up. I played ice hockey then, but I knew I’d lose my sight and wouldn’t be able to play. At 15, I understood I’d never drive—that was painful,” he recalled.

After finishing school, Pirkola studied business and massage therapy, relying on interpreters to navigate an environment where neither his teachers nor classmates knew sign language. He later founded a massage therapy business, supported by limited state funding. Today, he travels with two tactile sign language interpreters, who help him explore new places—he has visited 21 countries so far.

Pirkola’s message is clear: disability doesn’t mean a life of isolation. “At first, it was very difficult. Life seemed full of obstacles, but I learned to adapt,” he said. “Now, I use a white cane, I’ve accepted my disability, and I live a life I love.”