Seeing Through Disability
In her own words, Bari shares her perspective with having a father and brother affected with retinitis pigmentosa and how she’s now helping to make a difference to end blinding diseases.
by Bari Bergstein
How are you supposed to feel when your father's debilitating hereditary disease gets passed to your sibling and not you? I've struggled with this question for the better part of my life.
My father has retinitis pigmentosa (RP), a retinal degenerative disease. RP initially presents itself through night blindness and decreasing peripheral vision, gradually leading to a total loss of sight. Watching my father struggle with everyday tasks such as driving, having a catch, and sadly, losing the ability to recognize faces was painful for me to experience. As a child, I was always looking to hold my father's hand. Initially, holding hands as we strolled through stores was symbolic of my father protecting me. Over the years, holding hands has become a necessity as his vision continues to diminish. While my family has always been very supportive and helpful to my father, I have always been his physical guide. He looks to me to lead him through a dark restaurant or simply while walking down the street. I felt empathy towards my father because I always read his emotions towards his disease even though he hid it so well. My dad never wanted pity or for us to treat him differently because of his disability. His positive outlook on his differences were inspiring not only to people with similar problems but to the people who have none.
Throughout my youth, I was fearful I would be inflicted with this hereditary disease. When I was a little girl and didn't fully understand the science behind the disease, I would often wake up and blink many times to make sure I could still see. While doing that would not reveal if I had the disease or not, it was a way for me to express my concern. Thankfully the early symptoms of RP were not presenting, and I would later discover the gene had passed me by. Unfortunately, my older brother Jason was not as lucky. At 15 years old, he was formally diagnosed with the disease. Having watched my father's vision and independence deteriorate throughout my life made my brother's reality having to endure a similar path unbearable. I was drowned with guilt and sorrow. It wasn't easy to cope with knowing I was spared, but my brother was not. My ability to visually maneuver in any surrounding was a constant reminder that Jason eventually would not have the same luxury.
There are always two paths one can take when facing adversity. The dark road consists of negativity, hopelessness, and despair, or the path of positivity, hopefulness, and determination. I was committed to transforming my guilt and confusion into something productive. If I was going to join my brother in his lifelong fight, my choice of which road to take was easy. The apparent emotional support came easy to me, but I needed to do more. I was driven to raise money, which would help scientists find treatments and cures for retinal degenerative diseases. In 2017, I founded "Strike Out Blindness," an annual bowling fundraiser. All proceeds were donated to the Foundation Fighting Blindness, a widely recognized non-profit organization whose mission is to end blindness.
A favorite family pastime helped to create a day filled with fun, laughter, and happiness. An extensive list of donated raffle items and great tasting food made the day even more enjoyable. The support our community displayed was incredibly inspiring. I witnessed the power of a unified group whose solidarity comforted my family. This has reinforced my belief in what could be accomplished when we support one another. It was so important to me that I didn't just raise money for a cure, but I raised awareness about disabilities which naturally pushed people to become more accepting of anyone who is different. My commitment to create and run these events have eased my feelings of guilt, replaced in part by the pride of hard work and success.
While I don't deal with vision loss, watching my father and brother struggle has made me more accepting of disabilities. I have come to the understanding that everyone has their unique differences, and that's a part of life. Disabilities have such a negative stigma around them, causing people to look down on those who are unlike the “normal person.” What I have learned from having a legally blind father is sometimes all it takes is special accommodations to help the person thrive. Stairs have always been an obstacle for my dad in unfamiliar environments. To ensure he gets down stairs safely, I tend to walk ahead, counting the number of steps and reporting back to him how many he has to get down. Although a small gesture on my part, that action helps my father feel safe and secure. Jason does not like to ask for help, yet I always tend to put my iPhone flashlight on when we are walking in the dark so he cannot only see better but see I support him through actions.
I believe a big part of why many people ignore others' disabilities is simply because it's less effort. When you don't take progressive steps to help people through their challenges, it is hard to comprehend their struggles and the things you could do to help. While it would be easier for me to walk in a crowd without holding on to my dad and navigating him, taking that extra step to help him makes such a difference in his life. I grew up around disability which has allowed me to take people's differences into consideration and be mindful of actions I could take to help them. I have always put other people's needs in front of mine, which has given me many traits that make me who I am. I am aware that not everyone has the luxury to live a so-called normal life, but it is how you handle that that sets you apart. My dad has always been adamant that disability is not an excuse, yet people should be accepting and accommodating to things other people can't control.
Crowds, no matter how large, have always been a problem for my dad. His lack of peripheral vision often leads to him knocking into being accidentally. People's reactions tend to be rude, whether they give him a dirty look or say “watch out.” Having to witness encounters like these inspired me to never assume someone else's situation. While it may seem my dad was just being an angry New Yorker banging into people as he walked, it is much deeper than that which strangers don't see from the surface.
The overall lesson that my dad and brothers' disabilities taught me was to treat everyone the same way with kindness. You never understand what anyone is going through behind closed doors, and jumping to conclusions about a person without seeking understanding about their differences is unfair. Instead of using your energy to judge people who don't look, act, or seem the same as you, use it to help them flourish the way every person deserves to. We've all been dealt different cards, some a better hand than others, but it's the responsibility of the lucky ones to modify environments to be suitable for people of all kinds.
So I ask again, "How are you supposed to feel when your father's debilitating hereditary disease gets passed to your sibling and not you?" For me, I needed to help fight this battle alongside Jason, which alleviated my feelings of guilt and sorrow. It is truly humbling and gratifying to know I made a difference not just with my words but also with my actions. Living life alongside people who are categorized as “different” by society opened my eyes to a whole new meaning of acceptance. You can say you accept everyone for who they are, but it is in your actions that prove you do.