This opinion piece is informed by my personal experiences and poignant life story.
My name is Ian Adams, and I have Retinitis Pigmentosa (RP).
As my vision slowly disappears. Raising awareness on Retinitis Pigmentosa and living with a disability.
Retinitis Pigmentosa is a rare genetic disorder that affects the retina, causing progressive vision loss and, eventually, blindness. With no current cure, it is a reality that I feel compelled to speak out about.
As my vision slowly fades, I am proud to share my story and raise awareness about the resilience of those affected by both invisible and visible disabilities.
"When people meet those who are differently abled, I often wonder what goes through their minds. Do they feel shame, pity, or gratitude for not having a disability? Do they feel the urge to help? Life is hard for all of us, whether we have a disability or face daily struggles. This is the reality for many, and it is essential to understand and empathize with each other's journeys. Having RP has taught me compassion, empathy, and how to recognize others with humility. It has taught me what it means to be and remain humble."
As I reflect on my journey with RP, I am reminded of the day my life took a drastic turn. Diagnosed at age eleven in 1991, I was told I would be blind by twenty-one. The prognosis was devastating, and I made a decision that would alter my path forever. I dropped out of school. Without the support and resources to navigate my condition, I felt hopeless. The doctor’s words replayed in my mind like a looped recording: “You’ll be blind by twenty-one,” a perpetual reminder of my supposed destiny. I believed those words and thought my future was sealed. Growing up in a low-income community, there wasn’t much information about RP, but my parents did the best they knew how considering I was the only one in the family with this condition. Now, as I look back, I realize that RP didn’t just take my sight; it also took my sense of purpose and potential.
I want to raise awareness about the impact of RP and the importance of support and resources for those affected. We need to challenge the narrative that a diagnosis like RP means a life without purpose. Let us also reflect on the effects of placing a timeline on when people will go blind. As a husband and father, I am driven by a renewed sense of purpose to spread awareness about RP and its complexities. My loved ones, despite their best efforts, struggle to understand my condition. Do I blame them? Of course not. It is incredibly difficult to make others fully grasp the severity of this complex condition.
They often think I am simply being careless when I bump into things or objects right in front of me. “Can’t you see it’s right in front of you?” they ask, frustrated. But the truth is, I am doing the best I can with the vision I have left. I want to educate them and the world about the realities of living with Retinitis Pigmentosa. It is not just about losing sight; it is about navigating a world that is not designed for us. It is about finding ways to adapt, overcome, and thrive despite the challenges.
Growing up, it was hard to make sense of it all. I would curse God as a child, asking, “Why me, God?” I’d wonder, would I ever get a girlfriend, drive a car, get a wife, have a child, or find a job? I would lie to employers, saying I had a matric certificate (grade 12), while not focusing on the good things I had right in front of me but instead fixating on the doctor’s words, “You’ll be blind soon.”
What people need to understand is that growing up with RP brings not just physical challenges but also psychological ones. The emotions, as well as the anxiety, often lead to depression. Your brain plays tricks on you. One day, you can see all right; the next day, it’s a struggle. I struggle to explain this to my daughter. It’s exhausting to always say, “My darling, Daddy has RP, and for this reason, I can’t play ball every day.” She often responds with confusion, saying, “But yesterday we played outside late; today, we can’t shoot netball hoops. Daddy, just be honest. You don’t want to play anymore.” This exchange is frustrating. I can see the disappointment, and it’s even more painful when I become irritable, not by choice, but because I’m unable to do what I want to do: spend as much time with her as I am able.
The fact that RP is a progressive disorder means it is a constant process of grief we have to endure. This relentless cycle of loss and adaptation can lead to moments of unbearable vulnerability, like the one I experienced recently at the Cape Town International Airport. I will never forget the humiliation of being stranded at security, unable to get assistance from the staff. I had to rely on strangers to help me, feeling like a burden and a spectacle. The experience was degrading, making me feel like I had lost all autonomy and dignity. Can you imagine seeking help from strangers while breaking down in tears in a crowded airport? Can you imagine being asked by airport staff, “What are you doing here if you can’t see? Why come alone if you’re blind?” In that moment, I just wanted to crawl into a hole and disappear from embarrassment.
It is moments like these that reveal the true impact of Retinitis Pigmentosa, not just on myself but on my sense of self-worth and independence.
I believe what the world needs now is humility and compassion. We all face unique challenges daily, and it is crucial to acknowledge that everyone struggles in their own way. If we can’t find ways to support each other, the least we can do is be kind. Through my writing, I aim to share compassion and understanding.
Let’s work together to create a world that’s more inclusive, compassionate, and supportive of those living with disabilities.
Furthermore, I want to highlight the glaring inequalities we face as a society. As a visually impaired individual, I experience discrimination and prejudice firsthand. It is disheartening to see that while the deaf community has successfully advocated for sign language to be recognized as an official language of South Africa, braille remains overlooked. You might wonder, what is braille? Braille is a tactile writing system that appears in the form of raised dots. It is a unique language that empowers visually impaired individuals to read, write, and communicate independently. Its exclusion from official recognition perpetuates the marginalization of our community. I urge policymakers and society to acknowledge the value of braille and work towards greater inclusivity for all.
In conclusion, my journey with Retinitis Pigmentosa has taught me the importance of resilience, empathy, and support. Like Joseph, I have endured unimaginable hardships, but through faith and resilience, I have risen above adversity, transforming trials into testimonies. I hope that by sharing my story, I can inspire others to embrace their challenges and advocate for inclusivity. Together, we can break down barriers and create a world where everyone can thrive, regardless of their disabilities.
Let’s create a wave of change and a more inclusive world for all.
Ian Adams, a loving husband, father, and activist for invisible and visible disabilities. Finding strength in the life story of Joseph.
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