If every picture tells a story, then artist Sharona Franklin has used every artistic medium to capture and chronicle her long journey with arthritis. Her work is definitely not art for art’s sake.
Every day, the 33-year-old writer, artist and advocate battles a myriad of rare juvenile inflammatory and autoimmune diseases, but despite that, she always finds a way to make a range of art that includes writing, publications, prints, clothing, design, sculpture, poetry, photography, performance, installation and working on her advocacy for others..
Born in Vernon, B.C., Sharona was raised in multiple homes, with a family history of addiction, mental health issues, illness and disabilities. Sharona grew up in a creative family with seven siblings, six of whom are also artists.
“I started making things when I was quite young. When you don't have a lot of money, you have to improvise. We’d make furniture out of found objects, there was a lot of escapism and creativity in making; a sense of peace and control within the chaos of our home.”
Since Sharona had been ill from an early age, social workers monitored her family as they moved, living in various trailer parks throughout the interior of B.C.
Since a baby, she suffered colon problems, rashes, constant infections and issues with her joints, eyes, heart and lungs. After a long time of uncertainty, Sharona finally met with a pediatric rheumatologist who began to treat her as a juvenile arthritis patient.
“My joints became so visibly swollen I could not move at all. They were as swollen as water balloons and had to get fluid removal and high dose steroids. They initially thought I had scarlet fever because I was covered in a rash from head to toe and my white blood cells spiked. “I was then diagnosed with multiple diseases, including systemic juvenile idiopathic arthritis, Behcet’s, ankylosing spondylitis, inflammatory bowel disease, pericarditis, pleurisy and uveitis. Those symptoms have continued ever since.”
After elementary school, Sharona moved around and was eventually placed on a Youth Agreement Program in government care. Youth group homes did not offer solace, as she found herself alienated by rare illnesses and unsafe with strangers administering her treatments.
“Awareness needs to be raised about rare juvenile disease patients in government care because we are a high-risk, often invisible demographic facing considerable barriers,” says Sharona. “A lot of my artwork works to develop a mythology to share these narratives and help to educate.”
“It’s crucial that we advocate for the challenges of disabled youth in government care, so many childhood arthritis events are centered solely around the family.”
“As kids with arthritis, we develop with no verbal language for our experiences, and often few role models. There is no well-laid-out path to follow. We are still learning and growing while battling illness. Our body’s painful uncertainties can make our futures feel obstructed.”
Sharona did not publicly share artwork about her disabilities until she was 27, due to fear of judgement and internalized ableism. With the support of therapy and community, she worked through those emotional blocks and began to share her personal artwork, despite daily barriers with chronic pain and illness.
“I have to pace each small task, timing everything because my mental and physical abilities fluctuate, my internal battery runs out quickly. Some days I can walk, some I cannot; eating, bathing and dressing are major challenges at times. If it’s my vision, my spine or whatever is affecting my ability at the time, I have to gauge my exertion and rest, working efficiently.”
“To access care, it’s important to surround ourselves with those who accommodate our physical barriers and make life more accessible for us, without placing judgement.”
Sharona’s work will most notably be featured in Saskatoon’s Remai Modern’s current exhibition: An apology, A pill, A Ritual, A Resistance from March 13-24, 2021. Her featured piece, ‘Comfort Studies’, a quilt strung with photographs taken daily over a four-month period, is a testament to the challenging biomedical routine she must go through.
“I wanted to change people’s exposure to pharmaceuticals, spark a discussion. Needles can harm, but they can also heal. For me, the benefits of my meds outweigh their risk, but I didn’t always see it in such a clear light.”
Her journey and reflections helped her to consult with Remai Modern Museum on the institutional accessibility model Relaxed Tours. The program is intended for galleries and museums to better accommodate people with disabilities. Based on personal experience and the advice of occupational therapists, Relaxed Tours implements gentler lighting, additional resting areas, visual and audio descriptions, and much more.
“This is an extended arm for people with disabilities. These tours will provide visitors with an environment that is suited for them, re-thinking what accommodations can be made to facilitate a stress-free experience. This could be implemented in other galleries and museums all over the country.”
Although arthritis has left its mark, Sharona is a fighter, a survivor, and refuses to let it win. “With childhood disability, we are forced to go back in time and try to process our childhood with the cultural understanding and language we have access to now as adults. Whatever happens, juvenile arthritis won’t stop me from supporting others and being an equal contributor to society.”