by Ryan Boudwin
From the Editor: Ryan Boudwin is the United Utah Party nominee for the 42nd district of the Utah State House of Representatives. He is relatively new to blindness, and he had the good fortune or exercised the good judgment to become involved with the National Federation of the Blind and get training to deal with his newly-acquired vision loss. He lives with his family in South Jordan, Utah. You can learn more about his campaign at ryan4utah.com. Here is what he says about his life, his transition, and his commitment to live and thrive in the world he intends to help change:
I am thirty-five years old, and I am blind. But I haven’t been blind very long. I’ve always been a very political person. I lobbied the adults I knew on behalf of my preferred candidates before I was even old enough to vote. I hold a master's degree in international relations from the University of Warsaw, Poland, as part of my Fulbright Fellowship to that country.
Most of my life I had identified as a moderate Republican. When I lived in Utah County, I was elected precinct chairman and a member of the Utah County Republican Party Central Committee. The extremism I saw there led me to ultimately change my party affiliation and join the United Utah Party. The United Utah Party is a moderate, centrist third party that is seeking to improve the political climate in Utah and elect reform-minded candidates that will help bring a modicum of sanity back to our polarized political environment.
After volunteering with the United Utah Party for some time, I was appointed the Utah County Party chairman in December 2018. I was enjoying my volunteer work, doing something I was intensely passionate about to make my community better.
On February 2, 2018, I was diagnosed with retinitis pigmentosa. It was quite a shock for which I was not really prepared. At this point I had doughnut-shaped blind spots in both eyes and was not yet legally blind. My mid-periphery and nasal fields were gone, but my central vision and far periphery were still working. I likely could have hidden my condition for some time, but I knew I needed to make some serious lifestyle changes. 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 nonvisual skills that I would need before I was entirely helpless without them and adjust my lifestyle so my pending blindness could be mitigated as much as possible. So I resigned my position as county chairman the day I was diagnosed to allow myself to focus for a time on adjusting to blindness after this terrible news.
Within a week of my diagnosis I had ordered a white cane. I arranged for a field lesson with a cane instructor to get me started, and I went to my first meeting with the National Federation of the Blind. That first meeting I met a lot of people who had been through the same challenges I was facing now. I realized I was not alone in this struggle. Most importantly, I saw blind people who were clearly happy, well adjusted, and living the lives they wanted—I knew I wanted to be like them. I didn’t want to let my blindness control my life.
I took a tour at the training and adjustment school in Salt Lake City, Utah. I knew immediately that this program was something I was going to need, so I worked with my employer to arrange for me to be able to take a leave of absence for six months so I could attend the school full time. I also knew that where we were living was going to be a problem. My wife and I had a beautiful home in Saratoga Springs. We loved our neighborhood, we loved our neighbors, and had finally made a lot of friends after three-and-a-half years. Unfortunately, the public transportation there was almost non-existent, and I knew that my decision to stop driving was going to mean pretty severe isolation if we stayed there. I knew I needed to move somewhere with better public transportation infrastructure if I was going to be able to maintain my independence and my sanity. Luckily for me, my wife was very understanding about the situation, and together we decided to move. In less than a month after my diagnosis we had moved out and put the house on the market. We found a lot in Daybreak, a neighborhood in South Jordan right next to a light rail station, and started building a new home.
By April I was a student at the training and adjustment school. During this time, I started to get to know Dr. Kenneth Jernigan through the pages of Kenneth Jernigan: The Man, The Mission, The Movement. I grew to love his example, as a boy and then a man, faced with daunting challenges and without the support that I had. The more I learned of the NFB philosophy and the more discussions I had with my brothers and sisters in the Federation, the more determined I was that I would continue to live a fulfilling and satisfying life. Blindness was not going to hold me back.
Putting on my shades and turning off the visual world for six months was one of the most difficult things I have 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. Because of the training I have received, I am able to still be the primary breadwinner for my family.
Now that my training is done, I use what vision I have as much as I can, using whatever blend of visual and nonvisual 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. It means I don’t miss steps and curbs, and it means that I am safe. At night I rely on it much more.
On December 5, 2018, I was declared legally blind. My disease has progressed enough that I only have twelve degrees left of reliable central vision. 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.
So I decided to get back to doing the things that matter to me. That meant re-engaging in scouting, and so I co-founded a community scout troop in my new neighborhood where I currently serve as an assistant scoutmaster.
That also meant that when my state party chairman called me this past February and asked me to run for the state legislature, I said yes, jumped in with both feet, and kicked off my campaign. I decided from the very beginning that I would be open about my blindness during the campaign, because it is respectable to be blind. It is referenced in the bio on my campaign site. I travel with my cane everywhere I go, so it comes along on the campaign trail to every house I visit.
Sometimes it invites questions about how I can be an effective legislator if I am blind, which leads to a discussion about the nonvisual skills I learned during my rehabilitation and the assistive technology I use to be able to work effectively at my day job as a technical recruiter. Usually it is an opportunity to spread some NFB philosophy and help another member of the public to learn about blindness. And most of the time, voters are supportive of someone working through adversity to still make change in their community, though sometimes I wish I could spend more of our conversations focused on the problems facing Utah and my plan to solve them. Sometimes it invites abuse from people who do not understand blindness.
The other day I was canvassing in a local neighborhood, distributing doorhangers as part of our alternative electoral strategy in this age of social distancing from COVID-19. I was quietly walking from house to house with my cane and my mask, hanging a doorhanger and then recording on my smartphone which voter I had contacted for our campaign records. Because I still have some usable central vision, I often use my smartphone visually for short tasks like this.
There was an older man sitting outside on his porch watching me from the other side of the street as I did this. After he saw me using my phone, he started screaming at the top of his lungs that I was a fake, a fraud, a liar; that I shouldn’t have a cane because I wasn’t really blind, and I was obviously trying to mislead the public. He was making quite the scene.
I crossed the street to go talk to him. I tried to calmly explain that it was true that I was not totally blind. I tried to explain to him that blindness is not a binary condition, that most blind people have some remaining vision, and that I was one of those people. He continued to scream over me. His wife was obviously embarrassed by his behavior, and it was becoming clear that I was not going to get through to this gentleman. Eventually I just said that he was misinformed about the nature of blindness and that if he ever wanted to learn more about it, he could go to nfb.org and learn more from the National Federation of the Blind. As I walked away to head to the next house, he continued to scream at me from his porch. I don’t know how closely his neighbors watched this exchange, but I hope they saw it for what it was.
This little episode and the dozens of conversations I have with voters in my district show me that we as the Federation have a lot of work yet to do in terms of educating the public about the true nature of blindness, about the ways we are still able to live fulfilling lives, and in terms of raising expectations for blind people everywhere. It should not be such a strange and remarkable thing for a blind person to aspire to public office and serve their community.
My brother, Derrick Boudwin, who is also blind, has always been an inspiration to me. He said,
We are who we choose to be, and how we define ourselves matters. So today, instead of defining yourself by the things that you wish you weren’t, or by things that you have no control over, try describing yourself by the things that you choose to do. The things that you do on purpose. For me, this means that even though I struggle with things like blindness, anxiety, depression, and ADHD, those things aren’t who I am. I am not depression. I am not ADHD. I am not anxiety. I am creative, I’m kind, I’m compassionate, I’m hardworking, and I’m strong. You try it. How we define ourselves matters. And it’s a choice that we can choose to make. So who are you going to choose to be today?
Let us follow Derrick’s wise words. We are not blindness. We are who we choose to be. We must choose to have high expectations for ourselves. We cannot sit and wait, hoping that somehow the world will someday accept us as equals as we watch from the sidelines. We must work towards our goals and excel in whatever vocation we choose for ourselves. The best revenge we can have against the naysayers is joy we take in our own success. We must stand up and be the kind of change we want to see in our communities. Little by little, that change will come. And we will see the image of our efforts reflected in the reality around us—the reality that we, the Federation, have helped to build.