Discovering Strength After an Usher Syndrome Diagnosis

Audrey Chard Speaking at a Fundraiser for Usher syndrome

In 2016, deciding it was time for more training at the Idaho Commission for the Blind and Vision Impaired to help accept my condition, gain more confidence, and learn about available accommodations, I packed up my home and moved to Boise, Idaho. The program, the Assessment & Training Center (ATC), immersed me in a world of simulated total blindness. Wearing blacked-out shades – resembling oversized bumble bee goggles – we navigated everywhere with our canes. This intensive training, five days a week for eight hours, aimed to rewire our brains, forcing us to rely on other senses to achieve independence. As the instructors often said, we were building a “toolbox” of adaptive skills.

 The classes included: Orientation and Mobility, Computer Literacy and Assistive Technology, Activities of Daily Living (cooking, sowing, laundry, talking devices to help in the home, how to set up placemat and more), Braille, Industrial Arts/Woodshop, Job Readiness, Discussion class and Activity Days. Despite the long and draining days, I recommend this program to anyone experiencing vision loss. It helped me see that , with adaptation, changes, and accommodations, we CAN do anything we want to! It was scary at first using the stove, knives, and shop tools not using the sight I had left. In the end, it was all worth the nerves and sweat. Woodshop was a confidence boost! No injuries! O&M allowed me to gain more confidence, not just because I had two wonderful instructors, who taught me not just cane skills, but how to visualize the town’s layout in my mind. Neither had worked with a student that had hearing and vision loss, so to understand what it was like they put on the shade and shop headset to block noises while using the cane around downtown. You don’t realize how much you rely on your hearing when using a cane to travel. There were days I wanted to cry and throw my cane from straining to figure out which way the traffic was going so I could cross the street safely. Now I know I can do it, no matter how scared I am.

Living with Usher syndrome means constantly adapting as we lose more vision. No one’s story is the same. There are still times that I struggle with the many emotions inside of me and it doesn’t help that I also suffer from chronic depression and severe migraines. Not knowing anyone else with USH made me feel alone. It was not until I was a part of a book called “Walk in My Shoes: An Anthology of Usher Syndrome” (sadly it was discontinued due to a reason we couldn’t control) that I met others with different levels of hearing/vision loss. Then it was the Usher Syndrome Coalition conference in Philadelphia that introduced me to the USH community. I was overwhelmed with information but watching others walking in the “same shoes as me” was exhilarating. I no longer felt alone. I could talk to others who understood what I was going through emotionally and understood the never-ending cycle of coping that I fell into when my vision worsens. Being a part of the USH community gave me a sense of belonging with access to resources, friendships and so much more.

It has been a dream of mine to start a side business selling my crafts. Now that I have five degrees left of my vision, I decided it is time to make this dream come true while I still have time left to enjoy. I use a Cricut machine, then woodburn by hand with a pen and a laser that I use to cut, engrave and score wood and other materials. It all started when I designed my own ABC print/Braille book with my Cricut machine. I wanted to share my work with my friends and community so I designed an USH sign for a fundraiser in my hometown and fraternity paddles for brothers with Usher syndrome. I decided it is time to make the dream come true while I still have time to enjoy crafting. Blind Alley Crafts is coming soon!