Diversity, equality and inclusion did not exist in the 80s and 90s. Anyone with a disability or a different norm had a hard time. Unfortunately, some of us are still struggling. Growing up in a small rural town there was no access to neurological ophthalmologists. I was in elementary school when I was diagnosed with Autosomal Dominant Optic Atrophy (ADOA). My mother drove me to Salem, Oregon, USA from Washington State to get diagnosed and find out if there was any hope or help available. Not to anyone's surprise, there was no solution or tools that could help me. In fact, at that time, as far as I know, few people knew about ADOA. I used to tell people, “I can see, but I can't see.” I was not completely blind, but my vision was and is extremely limited. Each person with ADOA has different vision, so no two of us are the same. The range of vision can vary greatly, and color blindness and hearing problems can also occur, along with various adaptive signs and symptoms.
It turns out that I inherited this disease from my father, and I remember the stress he endured at the CBR every year he had to renew his driver's license. Today he is legally blind. Looking back now, I fully understand and empathize with the enormous challenge it is to continue driving, and the limitations it places on work and independence. I understand the stress he must have been under during those years. Apparently there is a 50-50 chance of inheriting this eye disease, and my child has it too. I've seen her get the same neck and shoulder problems when we bend over screens and things we need to see better. She couldn't see the blackboard at school, or menus, or her friends from a distance. Migraines are common in our situation and are often the result of shoulder and neck pain due to our poor posture for vision. When there are concerts or plays we want to attend, we save a long time to try to get to the front row so we can see it, or we don't go.
As a child I could never see the blackboard at school. I couldn't (and still can't) read menus in fast food restaurants or movie theaters. If someone in the car pointed out a deer or something else in the distance, it was easier to say “wow, cool” or “oh nice” rather than repeatedly explaining that I couldn't see what they were pointing at. I got a lot of questions like “don't you see that?” or the always helpful “look over there,” which provided a landmark that I couldn't see either. The people weren't trying to be mean or make me feel worse than I already did; the knowledge and awareness just wasn't there for them. Unfortunately, little has changed in society regarding this topic. Still, I help raise awareness whenever I can.
My vision has steadily declined, as is common with this disease. My color, night and distance vision have been affected over the years. But as an optimist and fighter, I remain positive and ready to use any new technology or advancement to help my daughter and me stay independent and maintain quality of life. It wasn't until I became the mother of a child with ADOA that I started to focus on solutions and possible cures. I started researching what other countries were doing and what research was going on in the industry. Connecting with the incredible team and members of the Cure ADOA Foundation has been a huge asset. Not only do they bring members of this community together and share medical advances and awareness, but they also bring hope to us all.
I remember hearing that scientists were researching a cure for this disease. I had taken my child to the Jules Stein Eye Center in Los Angeles, California, USA. The neurological ophthalmologist told us they were working on a cure, and he knew everything about the disease, and said there was hope. I cried. Long, big tears that bordered on crying. No one had ever told me there could be hope, let alone understood what was wrong with my eyes. Finally, here was someone who knew what was going on and could offer hope for my child and me.
So, here we are at the end of 2022, and thanks to the Cure ADOA Foundation, I have a significant amount of hope for a cure. Meanwhile, modern tools and technology help us order groceries and requesting menus before entering a restaurant is a revolution. The electronic world is absolutely wonderful for us! I use an app to magnify things and view them from a distance. Our phone's GPS takes us where we need to go. And while all these tools and technology are useful, the future is dark, literally and figuratively. Eventually I won't be able to drive anymore, and my child can't get a driver's license and will never drive. This affects where we live and how we interact with society. But on the other hand, working from home has benefited us and ensures a stable income in the future.
I understand that I can now advocate for accessibility and compliance with Section 508* and help others. I share this struggle with my daughter so that she too can stand up for herself and others. Together with the Cure ADOA Foundation, we can continue to help raise awareness and share the joy of medical advances and the hope for a future with vision.
*Section 508 requires the U.S. federal government to acquire, create, use, and maintain information technology that is accessible to people with disabilities, whether or not they work for the federal government.
