{"id":9055,"date":"2024-10-02T13:33:21","date_gmt":"2024-10-02T17:33:21","guid":{"rendered":"https:\/\/www.bluerocktx.com\/?p=9055"},"modified":"2024-12-03T09:27:18","modified_gmt":"2024-12-03T14:27:18","slug":"retinitis-pigmentosa-in-perspective-an-interview-with-charles-edouard-catherine","status":"publish","type":"post","link":"https:\/\/www.bluerocktx.com\/retinitis-pigmentosa-in-perspective-an-interview-with-charles-edouard-catherine\/","title":{"rendered":"Retinitis Pigmentosa in Perspective: An Interview with Charles-Edouard Catherine"},"content":{"rendered":"

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.\u00a0<\/span>\u00a0<\/span><\/p>\n

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.<\/span>\u00a0<\/span><\/p>\n

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?<\/span><\/b>\u00a0<\/span><\/p>\n

I\u2019ve 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\u2019d estimate that I\u2019m at around 0.01, which is essentially just light perception.<\/span>\u00a0<\/span><\/p>\n

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 \u201cbe cool,\u201d but I was afraid to go out after sundown because I was blind at night. I avoided using a cane because I didn\u2019t want to stand out. Looking back, I realize that wasn\u2019t the best choice, but it\u2019s pretty common for teenagers with RP to feel that way.<\/span>\u00a0<\/span><\/p>\n

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\u2019t 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\u2019s largely it.<\/span>\u00a0<\/span><\/p>\n

How did you adapt to losing your vision?<\/span><\/b>\u00a0<\/span><\/p>\n

Sports became a huge part of my life\u2014it\u2019s almost like a second job now. It\u2019s a bit funny because I didn\u2019t 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\u2019t do\u2026or at least what I<\/span> thought<\/span><\/i> I couldn\u2019t do.<\/span>\u00a0<\/span><\/p>\n

It\u2019s tough coping with the knowledge that you\u2019ll eventually lose your sight. You think about all the things you\u2019ll miss out on and lack of opportunities \u2014 it\u2019s 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\u2019t close doors.<\/span>\u00a0<\/span><\/p>\n

What kinds of technologies are available to help people with RP and other types of vision loss\/blindness?<\/span><\/b>\u00a0<\/span><\/p>\n

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\u2019s built into many devices as part of universal product design. That was a gamechanger. Now, I can easily use my wife\u2019s phone or the family iPad without needing to download extra programs.<\/span>\u00a0<\/span><\/p>\n

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\u2019t use it much before having them because screen readers were enough for me.<\/span>\u00a0<\/span><\/p>\n

There are also apps that make a big difference, like “Be My Eyes,” which connects sighted volunteers with people who are blind. It\u2019s 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.<\/span>\u00a0<\/span><\/p>\n

What do you do for work now?<\/span><\/b>\u00a0<\/span><\/p>\n

Since 2018 I\u2019ve been working with a nonprofit called the <\/span>National Organization on Disability<\/span><\/a> (NOD). What\u2019s special about this organization is that we don\u2019t focus on just one type of disability. We\u2019re working to remove the barriers holding disabled individuals back and create supportive environments where people of <\/span>all<\/span><\/i> abilities can thrive.\u00a0<\/span>\u00a0<\/span><\/p>\n

There\u2019s 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\u2019ve learned from working with these companies and advocate for legislative reforms, mostly at the federal level.<\/span>\u00a0<\/span><\/p>\n

It\u2019s work that takes time \u2013 you can\u2019t necessarily change company structures and policies overnight. But it\u2019s incredibly rewarding when you see the number of disabled people working at a company go up. I think it\u2019s a bit two-fold \u2013 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.<\/span>\u00a0<\/span><\/p>\n

Can you tell us more about blind soccer and adaptive sports in general?<\/span><\/b>\u00a0<\/span><\/p>\n

Blind soccer is very similar to regular soccer, but it\u2019s played 5v5. Four players are blind\u2014we 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\u2019re trying to score on, guiding the strikers. The ball has a rattle in it, which helps us track it as it\u2019s moving.<\/span>\u00a0<\/span><\/p>\n

It\u2019s a lot of fun, and I\u2019ve made lifelong friends through it. I\u2019ve even had the honor of being named team captain this year, and we\u2019re 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\u2014qualifying is really tough. That\u2019s 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.\u00a0<\/span>\u00a0<\/span><\/p>\n

What can sighted people do to make the world more accessible to those with vision loss or complete blindness?<\/span><\/b>\u00a0<\/span><\/p>\n

One big area is the internet, as over 90% of websites are not accessible. Most people don\u2019t think about accessibility when designing a site\u2014not just in terms of vision impairments, but for other disabilities too, like mobility impairments.<\/span>\u00a0<\/span><\/p>\n

When creating presentations or documents, also consider things such as whether the colors you\u2019re using can be differentiated by someone who\u2019s colorblind, whether the fonts are easily readable, etc. Including <\/span>alt text<\/span><\/a> 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.<\/span>\u00a0<\/span><\/p>\n

Something else to keep in mind is that accessibility practices aren\u2019t just beneficial for disabilities \u2013 they\u2019re often beneficial for everyone. This idea is referred to as the <\/span>curb-cut effect<\/span><\/a>, referring to when curves were cut into sidewalks with an original intention to help those in wheelchairs cross the street. We\u2019ve seen that curb cuts have benefited many other groups, though, such as parents with strollers, delivery workers with carts, and travelers with luggage.<\/span>\u00a0<\/span><\/p>\n

Another example is closed captioning \u2013 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\u2019ll see that when you optimize your content for screen readers, you\u2019re implementing good heading structures and building it in a way that\u2019s easier to navigate for everyone.<\/span>\u00a0<\/span><\/p>\n

Any other thoughts or things you\u2019d want our readers to know?<\/span><\/b>\u00a0<\/span><\/p>\n

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 \u2013 what limitations will they face, and what are they no longer able to do? That\u2019s part of the reason I didn\u2019t get involved in sports for a long time, but when I changed this negative mindset I realized that it just requires adaptation.<\/span>\u00a0<\/span><\/p>\n

I hold out hope that one day, we\u2019ll find a way to treat diseases like RP. Seeing my children\u2019s 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\u2014no matter their challenges.<\/span>\u00a0<\/span><\/p>\n

We\u2019d 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.<\/span><\/i>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

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. 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