“My name is Chantal Duquette, I’m 25 and I live in Phoenix, Arizona, United States. I am an artist, an activist, and an aspiring non-profit professional. My mother has AS, and had her hip replaced at the young age of 48. She is disabled now and cannot work. I inherited the HLA-B27 from her, but to this day I haven’t had much pain in my spine or hips yet – a little, but not unbearable. My first symptom, psoriasis, appeared when I was 18.
Then, at 20 years old, the Uveitis came. Uveitis is terrible – even dim light causes a stabbing pain in your eyes, they swell up to the point where you think they’re going to pop out of your skull, and your vision becomes white and blurry. The Uveitis is now considered “chronic” and I have to take a combination of Methotrexate and Prednisone to keep it from blinding me. I’ve had more surgeries and injections in my eyes than I want to remember, and I have permanent vision damage in my left eye from so many attacks.
To make matters more difficult, my father died when I was 21. My mother being unable to support me, I took a waitressing job to survive, and depended on AHCCCS, Arizona’s Medicaid system for the poor, for my health insurance. In the past few years, AHCCCS has taken a beating from state budget cuts. Thousands of people were cut off their benefits, and thousands more had their applications denied. Organ-transplant patients who were cut off their insurance immediately died, creating nationwide news headlines. I lived in fear every day that I would be next to lose my insurance – and my sight.
This year (2013), Arizona decided to expand AHCCCS through the Affordable Care Act (and thus save the insurance of thousands of people), but not without a tense fight in the Legislature. For most of this time I felt powerless to do anything, but my friends and family encouraged me to speak out. So I went to a public hearing at the Arizona House of Representatives and testified. I was one of the only Medicaid beneficiaries to do so. I told our lawmakers and the public about my Ankylosing Spondylitis, my struggles with blindness, and how it was only my Medicaid benefits that had saved my eyesight. I believe it was through the personal stories of people like me, that we won this important battle for healthcare in our state. (My picture is part of a photography project I did during that time – I am pictured with my AHCCCS health insurance card.)
Because of my illness and my poverty, it has taken me 7 years to complete a 4-year Bachelor’s degree. Nevertheless, in 4 months I will graduate from Arizona State University. I hope to work in the non-profit sector as an advocate for increased access to healthcare, for assistance to the poor and those living with disabilities.
I am incredibly grateful for my Ankylosing Spondylitis and my experiences in poverty; they have made me stronger, made me aware of the suffering of others, and given me a purpose to help my community. I wouldn’t change a thing.
“Stay strong, friends. “
Arizona, United States of America