It’s never too early for training

This was a speech given by me at the open house of the Division of Services for the Blind and Visually Impaired in Salt Lake City, Utah on October 23, 2018.

Hi. My name is Ryan Boudwin, and I am illegally blind. I have retinitis pigmentosa, and at present my field loss doesn’t match up with the legal definition of blindness. I have donut shaped blind spots in both eyes. I can see through the donut hole, and I can see around the edge of the donut too. I still have significant usable vision, and yet I am a graduate of the Training and Adjustment School. Why?

February 2nd 2018 began a normal day, like any other. I had the day off to deal with a couple of medical appointments. I headed off to see my optometrist, expecting a routine vision exam and maybe a new pair of glasses. During my examination I failed a routine peripheral vision test. As soon as this happened I knew what was coming because of my family history, but it didn’t become real until my retinal scan came back positive for RP. Suddenly I understood why just the night before I had almost hit a pedestrian in the dark, despite having always been an extremely cautious driver.

I am the fourth of five children in my family to be diagnosed with RP, so when the news came I had a very good idea of what was coming and what the progression would be like. Having been dealt a terrible hand of cards, I decided to try to think like an engineer and find the most optimal outcome possible for me. I wanted to be prepared for the future so that I wouldn’t have to be afraid of it. There is no treatment for my condition, and I knew my vision would get worse over time. I wanted to develop the non-visual skills that I would need before I was entirely helpless without them.

By April I was a student at the school. A lot of people thought I was crazy for going so soon after my diagnosis. After all, I could still “see” to some extent and so I didn’t “need” the training yet.

Putting on my shades and turning off the visual world for six months was one of the most difficult things I ever had to do. But I am so glad I did. Because I took action early, I was able to take a leave of absence and learn these skills while I still had a job worth saving. I was working in IT management when I was diagnosed. The training I have received is already making a massive difference as far as me being able to keep my job. In my present state I am able to work visually on a computer for part of every workday, but I am very sensitive to eye strain now and I can only get about three or four hours of productive work done that way. When I feel my eyes starting to go, I just close my eyes and keep on working with JAWS so I am still able to put in a full workday, using the computer and braille skills I learned at the Training and Adjustment School. Because of the training I have received, I am able to still be the primary breadwinner for my family.

I don’t have to give up on my hobbies; my woodshop and home management classes have given me the confidence that I can problem solve issues for myself and that almost everything has a non-visual technique that can be used, even if I haven’t figured it out yet. I have always enjoyed woodworking and Ray’s class has made it clear that I can still enjoy it for the rest of my life. Learning braille means that I will always be able to enjoy great literature. I’ve found non-visual techniques that make it so that I can still play pen and paper roleplaying games with my friends.

Now that my training is done, I use what vision I have as much as I can, using whatever blend of visual and non-visual skills makes sense for the task at hand. During the day my cane is primarily a low vision aid rather than my only means of navigation. It makes it so that I can look where I am going instead of staring at my feet; it makes it so that I don’t run into people anymore, and those around me have some clue that I might not see them. I always chop vegetables non-visually, using the skills I learned in my home management class, because my depth perception is so severely compromised. I watch movies with audio description so that I can take visual breaks and close my eyes whenever I feel the need to do so and still follow the story. I still watch baseball games with my kids, but now I use the radio audio feed so we can all still follow the game even when my eyes have decided that they are done working for the day.

One of the symptoms of RP is loss of night vision. In my case that means that every day I jump between the sighted world and the blind world with the setting of the sun. Because of the cane travel instruction I received at this school, I don’t fear the darkness.

My father died twenty years ago. And I still miss him every day. One of my fondest memories with him was going out to A&W after general conference. I have always tried to continue that tradition with friends or family as my circumstance permits as a way to feel connected with my father’s memory, but now I don’t drive. A few weeks ago, I decided to take my sons out with me anyway. We walked in the dark almost two miles to the restaurant, and I made new memories with my sons. My remaining vision is almost worthless in the dark, but I didn’t even hesitate that night. I just grabbed my cane and herded my three boys down Traverse Mountain. It was worth the trip.

As I was nearing the end of my time at the school, I had an appointment at the Moran Eye Center, and got an updated field test. The news was exactly what I knew to expect; my RP was progressing; my field loss was worse. After all the drugs they had put in my eyes and tests they had done that day, I stepped outside, unable to see much of anything. Without my training, I would have been helpless and would have had to just call someone to pick me up. Instead, I thought to myself, “I can do this blindfolded.” And I got on the train and went and got myself some lunch instead of despairing about the future. As I ate I thought about how grateful I was that I was already learning the skills I needed to maintain my independence. It made the bitter cup of my impending blindness a lot easier to take.

Some of the best parts of the Training and Adjustment School were the outdoor activities that we did under shades. We did a high ropes course; we went water skiing. We even went camping. Setting up a tent non-visually was more challenging than I thought it would be, but we did it. We went to Arches National Park and hiked and climbed among the rock arches there. We got on the Colorado river and went white water rafting. I built a fire that I could not see.

Some people might think that taking blind people camping as part of a rehabilitation program is a waste of time and precious resources. But that camping experience made a massive difference in my life, because it gave me confidence that I will always be able to enjoy the outdoors. I am a proud Eagle Scout and a lifelong Scouter. I had thought that I would have to give up being a scout leader because of my blindness. After this camping experience, I knew that I could always contribute to Scouting. And so I am chartering a scout troop in South Jordan. I’m going to be a blind scoutmaster. Just over a week ago I was inducted into the national honor society of Scouting, the Order of the Arrow. Joining this society requires going through an intense camping experience with very little food or equipment, a lot of manual labor, and a lot of hiking in the mountains in the dark, with a vow of silence until the very end. The process is called an “ordeal,” and I can tell you it is indeed quite the ordeal. I did mine with a cane in my hand.

With each eye exam I learn how much more vision I have lost. And I still mourn that loss. Training has not made me immune to that pain. What training has done is take away the fear of blindness. I am not afraid. I know I can still be a great dad, a provider for my family and an engaged member of my community. And I can continue doing the things that matter to me.  I am so grateful to everyone who has helped me along the way. This was one of the hardest things I have ever had to do, but now going blind is going to be just an inconvenience instead of a crippling disability. I still have a life to live.


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