Navigating life with Retinitis Pigmentosa (RP) brings unique challenges, but for Charles-Edouard Catherine, these challenges have only strengthened his resolve to thrive and help others do the same. RP is a rare, inherited disorder that causes progressive vision loss due to the gradual breakdown of cells in the retina. From growing up with limited vision to embracing a life of adaptive sports and advocating for people with disabilities, Charles’ journey is one of resilience, adaptability, and hope.听听
We had the opportunity to speak with Charles about his experiences with RP, the technologies that help him navigate daily life, and his work with the National Organization on Disability.听
Can you tell us a bit about your journey with Retinitis Pigmentosa (RP)? When did you first notice the loss of vision, and how quickly did your vision loss progress?听
I鈥檝e been visually impaired my entire life and became blind as a teenager. In France, where I grew up, we use a 0-10 scale to assess vision, with 10 being perfect. At birth, I was at about 2.5, so living with impaired vision was just normal for me. Now, I鈥檇 estimate that I鈥檓 at around 0.01, which is essentially just light perception.听
With RP, there are different phases of vision loss. Usually your night vision is the first to disappear. For me, that started around the age of 9 or 10, which made my teenage years challenging. Like most teenagers, I wanted to fit in and 鈥渂e cool,鈥� but I was afraid to go out after sundown because I was blind at night. I avoided using a cane because I didn鈥檛 want to stand out. Looking back, I realize that wasn鈥檛 the best choice, but it鈥檚 pretty common for teenagers with RP to feel that way.听
By the time I went to college, I was legally blind and had no choice but to use a cane. Even then, I could still “pass” as someone who just needed glasses if people didn鈥檛 notice my cane. I then became fully blind as an adult. I still have light perception and can tell, for instance, if the sun is setting, but that鈥檚 largely it.听
How did you adapt to losing your vision?听
Sports became a huge part of my life鈥攊t鈥檚 almost like a second job now. It鈥檚 a bit funny because I didn鈥檛 do any sports growing up due to my visual impairment. I actually resented athletics for a long time because it was a reminder of what I couldn鈥檛 do鈥r at least what I thought I couldn鈥檛 do.听
It鈥檚 tough coping with the knowledge that you鈥檒l eventually lose your sight. You think about all the things you鈥檒l miss out on and lack of opportunities 鈥� it鈥檚 easy to fall into a negative mindset and depression. But soccer helped me shift that perspective. I realized that blindness was not an impassable barrier, but rather a challenge I could overcome, and eventually, I saw blindness as part of my identity rather than a limitation. It shapes how I experience the world, but it doesn鈥檛 close doors.听
What kinds of technologies are available to help people with RP and other types of vision loss/blindness?听
There are many different tools out there. One of the big ones for me is the screen reader. In the past, I had to purchase separate software to install on my phone or computer, but now it鈥檚 built into many devices as part of universal product design. That was a gamechanger. Now, I can easily use my wife鈥檚 phone or the family iPad without needing to download extra programs.听
I still use some old-school technology too, like a talking weight scale and a “Say When” liquid level detector that beeps when my coffee is close to the top. Braille has also become important, especially for reading to my kids, though I didn鈥檛 use it much before having them because screen readers were enough for me.听
There are also apps that make a big difference, like “Be My Eyes,” which connects sighted volunteers with people who are blind. It鈥檚 great for everyday tasks like finding a specific can of food in your cupboard. Artificial Intelligence is also making strides in image recognition and alt text to improve accessibility.听
What do you do for work now?听
Since 2018 I鈥檝e been working with a nonprofit called the (NOD). What鈥檚 special about this organization is that we don鈥檛 focus on just one type of disability. We鈥檙e working to remove the barriers holding disabled individuals back and create supportive environments where people of all abilities can thrive.听听
There鈥檚 both a consultancy side and an advocacy side to what we do. From a consultancy side, we work with companies to ensure they have the right policies, accommodations, software, and job descriptions in place to hire and support disabled individuals. From the advocacy side, we take what we鈥檝e learned from working with these companies and advocate for legislative reforms, mostly at the federal level.听
It鈥檚 work that takes time 鈥� you can鈥檛 necessarily change company structures and policies overnight. But it鈥檚 incredibly rewarding when you see the number of disabled people working at a company go up. I think it鈥檚 a bit two-fold 鈥� not only are companies hiring more people with disabilities into their workforce, but as a result people also begin to feel more comfortable disclosing their disability status.听
Can you tell us more about blind soccer and adaptive sports in general?听
Blind soccer is very similar to regular soccer, but it鈥檚 played 5v5. Four players are blind鈥攚e wear eye shades to level the playing field, as some of us still have light perception. The goalkeeper is sighted and helps guide the defense. We also have a coach at midfield guiding the players there, and another coach behind the goal we鈥檙e trying to score on, guiding the strikers. The ball has a rattle in it, which helps us track it as it鈥檚 moving.听
It鈥檚 a lot of fun, and I鈥檝e made lifelong friends through it. I鈥檝e even had the honor of being named team captain this year, and we鈥檙e preparing for several international tournaments this fall. We also have our eyes on the next Paralympics. Blind soccer has been a Paralympic sport since 2004, but the U.S. has never fielded a team鈥攓ualifying is really tough. That鈥檚 going to change in 2028, though, when Los Angeles hosts the Paralympics, as we will automatically have a team qualify since we will be the host nation.听听
What can sighted people do to make the world more accessible to those with vision loss or complete blindness?听
One big area is the internet, as over 90% of websites are not accessible. Most people don鈥檛 think about accessibility when designing a site鈥攏ot just in terms of vision impairments, but for other disabilities too, like mobility impairments.听
When creating presentations or documents, also consider things such as whether the colors you鈥檙e using can be differentiated by someone who鈥檚 colorblind, whether the fonts are easily readable, etc. Including to describe your images is also immensely helpful. These changes can make a huge difference. Having a chief accessibility officer in your company can help ensure accountability for this.听
Something else to keep in mind is that accessibility practices aren鈥檛 just beneficial for disabilities 鈥� they鈥檙e often beneficial for everyone. This idea is referred to as the , referring to when curves were cut into sidewalks with an original intention to help those in wheelchairs cross the street. We鈥檝e seen that curb cuts have benefited many other groups, though, such as parents with strollers, delivery workers with carts, and travelers with luggage.听
Another example is closed captioning 鈥� most of the people who use captions for shows and movies are not hearing impaired. They might prefer to have their TV muted, or they have children playing in the background. When you apply this thinking to website accessibility, you鈥檒l see that when you optimize your content for screen readers, you鈥檙e implementing good heading structures and building it in a way that鈥檚 easier to navigate for everyone.听
Any other thoughts or things you鈥檇 want our readers to know?听
One of my philosophies is that disability is largely a social construct. When a parent hears that their child has a disability, whether that be vision loss, speech delay, or mobility issue, the first things that they often think about are negative 鈥� what limitations will they face, and what are they no longer able to do? That鈥檚 part of the reason I didn鈥檛 get involved in sports for a long time, but when I changed this negative mindset I realized that it just requires adaptation.听
I hold out hope that one day, we鈥檒l find a way to treat diseases like RP. Seeing my children鈥檚 faces would be a dream come true. But until that day comes, we must embrace the reality of disabilities, adapt to them, and create a world where everyone can thrive鈥攏o matter their challenges.听
We鈥檇 like to extend our sincere gratitude to Charles for taking the time to talk to our team about his story and his experiences with RP.听
