December 3rd is the International Day of Persons with Disabilities. You may have heard some rumbling about disabled representation in the movies lately – Anne Hathaway took some flak for her limb difference in The Witches, and Sia’s movie, Music, has been criticized for casting a non-autistic actor in the lead role. Representation matters, and while the Oscars LOVE disabled characters, they don’t show the same love for disabled actors, who are rarely cast to portray themselves on screen, and almost never cast to portray anyone else. Although 20% of us live with some sort of disability, less than 5% of movie and TV characters are disabled, and of those few who are, less than 3% are played by actually disabled actors. That math is abysmal. Are disabilities the last place of the civil rights movement?

To mark the International Day of Persons with Disabilities, we watched a documentary on Netflix called Crip Camp.

Camp Jened (its legal name), had actually been in existence for years, but in the early 1970s it was run by hippies who created an oasis of sorts for disabled teenagers. To anyone else, it would have looked like a run-down, ramshackle summer camp of nightmares, but to those who attended, it was practically utopia. In the 1970s, the world was not accommodating to those with disabilities. Most disabled persons lived in relative isolation, dependent on others, if not outright institutionalized. At Camp Jened, they were free. Not free of their disabilities, but free of the judgement and discrimination. In a camp where everyone was disabled, no one was; the disabilities virtually unnoticed, the campers were allowed to be defined by other things, perhaps feeling fulfilled as human beings for the first time. Like any teenager, they played sports, sang songs, smoked and made out – for many this was the only opportunity to “date.”

When they grew out of camp, this close-knit group stuck together, and started advocating and disrupting for disabled rights, inclusion, and accessibility.

Crip Camp is co-directed by filmmaker Nicole Newnham and former camper Jim LeBrecht, an overdue tribute to the place that ultimately changed the world for millions of disabled people.

Although the Americans with Disabilities Act was passed 30 years ago (in 1990: that is actually shamefully recent!), disabled people to this day are fighting just for the right to exist with dignity and anything resembling equality.

I myself live with several (mostly invisible) disabilities. 2020 has been a strange year for people with disabilities. On the one hand, the whole world has gotten a taste of what it’s like to be me. Because I am immuno-compromised, I’ve always battled against viruses, each one potentially very serious for me as I lack a basic immune system to fight them. With the pandemic, every Canadian across this country automatically got all of the accommodations I’ve had to fight to have at my own work: clean work stations, physical distancing, even the right to work at home, which seems a small ask when it’s potentially life saving. I’ve been in medical isolation at home since March. When restrictions were starting to ease up over the summer, many Canadians ventured out of their homes while I stayed in mine. Like many people with disabilities, it’s hard not to feel like life sometimes moves on without us, forgets the people still trapped in their homes. Now that the COVID numbers are increasing again, Canadian regulations have once again changed to reflect it, to protect the majority, while those of us in the minority try not to take it personally that our lives are not worth the same consideration.

Before COVID, I led a relatively normal life, at least to outside eyes. I went to work, I travelled, I spent time with family and friends. My life is permanently etched with pain, and my health is constantly compromised by every passing virus, but since I don’t have a choice, I deal with it. Sometimes I miss things. Sometimes I cancel. Sometimes I can’t get out of bed. But I lived. I made significant contributions to my field, I found joy, I was a presence in the lives of my niece and nephews, I hosted dinner parties and attended film festivals and fell in love. Every moment also in pain, sometimes unable to drive or walk or sleep, but doing my best, which was still pretty good. And now my life is on pause. It’s disconcerting, it’s unfair, but it’s not without its positives: 2020 was the first year I didn’t get pneumonia in at least a decade. How about that?

Because actual representation in film is so rare, this is a very short list of actors with disabilities excelling in film:

CJ Jones: he played Ansel Elgort’s disabled foster father in Baby Driver, stealing scenes and providing the film with warmth and heart. But for Jones, parts like these are almost unheard of. “It’s hard to find a black deaf role” although it looks like he’s found another in Avatar 2.

Kiera Allen: she recently played opposite Sarah Paulson in Hulu’s Run, a mother-daughter Munchausen by Proxy thriller. The role is extremely physically demanding, but Allen, who uses a wheelchair in real life, nailed the part and showed us all what she can do.

Adam Pearson: in Chained For Life, Pearson portrays an actor with facial deformities with whom his leading lady struggles to connect while working together. Pearson has neurofibromatosis, type 1 in real life and gives a formidable performance in this film.

Zach Gottsagen: he won hearts in The Peanut Butter Falcon, playing a young man with Downs Syndrome who escapes his care home to pursue his dreams of being a pro wrestler. Starring opposite Shia LaBeouf and Dakota Johnson, Gottsagen holds his own and proves himself more than capable.

Millicent Simmonds: who can forget the deaf actress’ stunning performance in A Quiet Place, a horror film in which monsters hunt what they hear, and one family survives thanks to their ability to communicate in sign language.