Benny is an artist, stand-up comedian, and former banker who was born with a rare genetic condition called Nail Patella Syndrome. The condition primarily affects his nails and knees, but he describes it as having “a variety of other issues that as I get older become more difficult and challenging to live with.” The physical challenges started in early childhood:
He underwent three major knee reconstructions before age twelve.
By age twelve he spent “half my life in plaster casts, trying to stretch some of my muscles to stop me walking on my toes”.
When he was a child, doctors predicted he’d “be in a wheelchair by about thirty” (he’s now in his 40s and uses a wheelchair to manage his chronic pain but isn’t permanently dependent on it).
He recently was diagnosed with Glaucoma and had eye surgery to manage its progression and prevent from going blind.
“There were only about nine people in Australia that had it (Nail Patella Syndrome) when I was born… None of my family had it and so I was basically on my own. Medically, physically, without any information about what I had.””
Misunderstandings About His Wheelchair
Benny often uses a wheelchair, which can lead to people making wrong assumptions or being confused about their preconceptions of people using wheelchairs. “If you see somebody in a wheelchair, it doesn’t mean that they can’t walk,” Benny states clearly. “I can walk and I use the wheelchair as assistance.”
He shares an experience on an airport bus: “I heard a couple asking my wife what my disability was because they could see me standing. My only problem with that was, why are they asking her and not talking to me? I find that quite rude.” He adds, “If you ask me [about my disability], don’t be surprised if I give you a rude answer because it’s quite personal… Just because my assistance may be visible doesn’t mean it invites you to ask me what’s wrong with me.”
Living with Constant Pain and Expressing It
What they can’t see is his constant companion: “My main issue is chronic (constant) pain. I’ve had chronic pain since I was born and that is getting worse and more difficult.” Like many people with hidden disabilities, Benny has become skilled at masking his struggles: “What I get really good at is pretending I’m okay.”
This chronic pain has influenced major life decisions. His dream job was “to be able to work on woodwork… but my body can’t do that.” The constant pain eventually led him to stop traditional employment.
The mental impact of living with ongoing pain has also been significant, leading to periods of “quite severe depression.” He explains, “I’d spent my life pretending to my friends, to my family, to everybody… that I’m okay. And I’m not. I really suffer and I really struggle.”
To cope and to be more open about his reality, he started sharing his story through Photography online (you can find him on Instagram at @BennyJ_artist). Each day, he posts a photo that includes a hidden number. This number represents his pain level for that day, and he accompanies it with a diary entry. This practice became his way “to show my friends, my family and the world that it’s not always happy.” That doesn’t mean that it’s just all pain every day. For Benny, resilience and strength are not built alone; they come from connection. “The way I lived with that and got through that is through the people I’ve got in my life that I’ve put there… to support me and to give me the strength that I need when I need carrying.” Moreover, it is “there to share and to connect with people about what life’s like” and building community through his art.
Travel and Asking for Help
Benny loves travelling. “I’ve had such a wonderful life. I’ve seen so much that everything I’m doing now travel wise is… just on top of more than I ever expected.” For him, travel “really gives me a way to understand myself and my limits and my abilities and gives me strength in life. It gives me successes, achievements.” It shows the rest of us what a fantastic photographer he is (@BennyJ_artist).
When he travels, it often becomes clear how different places and people are in supporting those with disabilities. He had very positive experiences in Australia, where good infrastructure and well-trained staff helped him “feel normal” and “just be.” His disability didn’t feel like it actually limited him in any way. In other situations, more careful planning is necessary and he is made to feel disabled at worst. “It was new and I didn’t know what to expect and I found the experience to be really rewarding. I managed to get to, I think, 90% of the places I wanted to go to.”
When Benny interacts with staff at an airport, trainstation, or similar, his request is straightforward: “Trust my judgement. Listen to me. Ask me what I need. If I say nothing, leave me be.” He is confident in his own abilities: “I’m quite capable of getting around on my own.” He appreciates it when airline staff ask inclusive questions, such as on his recent trip to Australia: “Would you like your chair all the way to the gate? Or can you walk onto the plane?” He feels this shows “they knew I was the expert in what I needed… It wasn’t a judgment… it was, ‘what do you need?'” This kind of interaction creates “an open dialogue and trust. That’s what is really important.”
Benny’s Advice
From his life experiences, Benny offers some deep insights. His advice for navigating life, especially during hard times, is to “invest in yourself… understand who you are and what your needs are… and then build a network of people and a life around that that enables you to live a strong and happy life.”
When facing a dark period, he believes “the only way out… is through yourself… looking at who you are and trusting your judgment and what works for you, making decisions that are in your benefit… and to accept the challenges that you’ve got… but to try to build a structure around you that focuses on your skill set and what you want out of life.”
His “Project 117,” an idea from his childhood to live until he is 117, is his “driving philosophy in life.” It’s about “living the maximum I can within my boundaries… It’s to not be, not sit still and give up. It’s to keep going.”
Benny’s story is about the continuous effort of living a full life while managing significant constraints. His core message to the world is direct: “I think every person, disabled or not, deserves to be treated like a person and that’s all that we’re looking for.” His simple request? “If you see somebody in a wheelchair, smile. If you have to stare, at least also smile.” And more broadly, “Look after yourself and look after somebody else too, if you can. That’s probably what actually matters in life.”
