The "Vulnerable Strength" of Celine Dion
At Her Most Exposed, Dion Forces Us to Witness her Mortality and Toughness, Acknowledge Our Own Mortality and Ableism and Recognize that the Disabled Should Never Be Counted Out.
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Several weeks ago during the early morning hours, I collapsed into tears while watching I Am: Celine Dion. I didn’t watch the Prime documentary because I am one of her fans. Despite her incredible voice, Dion’s style of music has never appealed to me. I watched it for only three reasons: connection, empathy and solidarity.
Celine Dion and I have nothing in common except our community: the disability community. Like my illness of multiple sclerosis (MS), stiff person syndrome (SPS) is an autoimmune disorder that targets and ravages the nervous system. Unlike MS, SPS is rare.
Toward the documentary’s conclusion, Dion’s full body seizes after her nervous system has been overstimulated from a day’s work. (CONTENT WARNING: The video below and shows Dion’s seizure and her experiencing a medical crisis that results in the medical trauma and medical intervention that follows). This is the part of the documentary where I broke. It hit so close to home.
I too have suffered a seizure — a tonic-clonic one that occurred on a Spring Sunday in 2011 at the Randolph and Wabash el stop located in Chicago's Loop. So far, the 2011 medical crisis has been the only seizure I have experienced in my life. While rare, seizures can happen in MS. Walking to the el that late morning, I knew something was off. My brain seemed suspended in aspic, and while I knew I was of the world, I felt separated from my material nature. The only thing I remember before losing consciousness was trying over and over to get through the el’s turnstile without using my Ventra card but confused why my hand couldn’t move the revolving steel arms.
Dion and I experience endless medical intervention to stabilize our chronic illnesses and treat them when they go awry. The constant injection of medical devices on top of our frequent consumption of medications and other pills wears on us.
The paths we were on when our respective autoimmune illness hit us do not converge. Dion was at the height of her artistic career when she began experiencing problems and received her SPS diagnosis, Before and during my time as an MFA in Writing at The School of the Art Institute of Chicago in my early-to-mid 20s, I had experienced problems I suspected were MS. I was 27 when I finally an MS diagnosis because of the severe neurological and vision problems I suffered the week I was to graduate with my MFA. On the morning of my MFA graduation, I did not want to attend. I still wish I had not and instead used the day and weekend to process this life-changing trauma and rest.
Now Dion and I are on the same path. Both our trajectories have been thrown off by our own bodies, and we experience immense grief from our own bodies betraying us and making pursuit our respective art forms more challenging. Our respective art forms have been part of our identities since childhood. Our art galvanizes our lives.
But as I emphasized in my newsletter’s most polarizing essay weeks ago, “Don’t ever dismiss or count out the chronically sick and disabled. Despite appearances, we’re more vital and passionate than most people realize. And we will set the world ablaze when you least expect it.” Dion's closing performance at the Paris Olympics’ opening ceremony proves my argument.
Because of NBC-Peacock's corporate greed in not allowing people to embed its YouTube video of Dion's iconic performance on their platforms, I can only share the audio of her singing Édith Piaf’s “L’Hymme à l’amour."
The chronically ill and disabled don't want people's pity. We don't want to be people’s inspiration porn. We don’t want people’s vitriol, vile language and rhetoric when we state the truth that society — in the U.S. and around the world — remains one structured and fueled by ableism. Listen to us. Don’t ignore us. Don’t cast us aside. All we want is respect as fellow human beings along with the support and accommodations we demand. That support—emotional, physical, psychological, societal, intellectual, financial— and those accommodations will allow to do our best work and fulfill our purpose and promise.
Ignore us at your own peril.
I love that her performance was one of strength. She showed that her professionalism, experience, and talent is in no way diminished by her health condition, as many may assume. People with Disabilities and chronic illness can absolutely still achieve greatness. We just need to do it at our own pace.
I graduated from SAIC in 2006 with a BFA, my second bachelor’s degree. I was old at the time. Getting the degree didn’t help my work life at all, but spending time with other artists did. The school taught me to think outside the box. Since I’ve been out in the world I’ve done things I would never have envisioned myself doing in the past. There were students at the school when I was there who were otherly abled, if you will. The school was open and welcoming and I loved it.