Benny J Artist

Artist. Photographer.

Poet. Disability Advocate.

Artist. Photographer. Poet. Disability Advocate.

Exploring resilience, identity and the human experience through visual storytelling.

Project 117 — A journey of resilience, adaptation and creativity

Benny J is an Australian-born, Luxembourg-based disabled Artist whose work explores resilience, identity and the human experience.

With a background spanning banking, sales, transport and life at sea, Benny J has experienced many different perspectives on work, life and adaptation. Living with a rare disease since birth has shaped the way he sees the world — becoming the foundation for a creative practice focused on finding meaning, connection and new ways of seeing.

Through photography, visual art, poetry and storytelling, Benny J transforms lived experience into creative expression — exploring challenges, humour, change and the ways we adapt to life.

Project 117 is the foundation behind this journey: a personal mission to live to 117 years old, despite the odds — embracing life through creativity, curiosity and connection. It represents a commitment to keep creating, keep exploring and keep finding ways to make life meaningful.

My disabilItY:

Nail Patella Syndrome

My disability is called Nail Patella Syndrome or NPS for short. It is a genetic disease that involves the mutation of the LMX1B gene. The symptoms vary in patients, and there are not many patients to study as this is a rare disease. My symptoms are most easily seen in my fingernails and knees.

I am missing the nails on my thumbs and index fingers, with the other nails also deformed. I am unable to use a pen properly and any extended writing or use results in cramps and pain in my arm due to the lack of strength provided by missing nails.

My kneecaps are very small, nearly missing in my left knee prior to surgery when I was 9 years old. The scars are from the 3 major knee reconstructions I have had at ages 9,10 and 11.

Visibly I also stand on my toes like a ballerina, making for some interesting balancing issues as well. I have short calf muscles and dislocating joints which combined with a bent spine creates a body in constant physical stress.

I also have extra bone growths on my hips and my elbows, that can be seen by a slightly more pointed bone structure in these areas. I suffer from arthritis in elbows and shoulder joints.

I also suffer from Glaucoma (going blind), an enlarged aorta and digestive issues, all related to NPS.

As I get older, the impact of these physical issues are impacting my life more and more, resulting in significant pain and reduced mobility. I am, however, as active as I can be when my body allows me.

Any questions relating to my disability and its impact on my life are welcome.

Daily Pain Diary from instagram

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