I’m Done Waiting: A Call for the Disabled Revolution

Annie Carl

I am angry. My whole being feels like it might burst and set fire to everything around me.

A peaceful protest has taken over the United States to support BIPOC (Black, Indigenous, and People of Color), Black Lives Matter, and other groups dedicated to eradicating racism not just in our country but globally. I love this so hard, and have been promoting education both for myself and others through my bookstore. I’m so happy to support friends, colleagues, authors, and anyone else who considers themselves a part of this community. I have made an effort to bring titles in to help educate customers on the BIPOC community, to research what fiction is written by an author in the BIPOC community, to make my shop a place for new ideas that support open minds.

In searching for these titles, it was again driven home how few books have been written on the disabled minority to educate able-bodied people. Most are biographies about bootstrapping through one’s disabled life, usually concluding with “look how amazing my life turned out/despite the odds, I made it through that garbage/if I can make it through all of this medical nonsense, you can get up in the morning and put on pants”. These biographies and memoirs are fine, and I encourage readers to pick them up. However, I don’t find the education opportunities in them that I see in books about the BIPOC and LGBTQIA+ communities.

This is astounding to me. Disabilities cross all minority borders. They have the ability to impact everyone on this planet, from broken bones, to cancer, to old age. So why is my minority and its representation still so far behind the others?

Part of it is, I think, because disabled people remind able-bodied people that they are mortal. Eventually, age will break down their bodies. New diseases and diagnoses will present themselves. The hospital and medical clinics will become more normal places to spend time. In Western culture, death is an upsetting, often terrifying topic. It is not treated with grace. Medical personnel can be challenging to work with, especially when one can’t get them to understand when something is wrong. (I went through this before I was finally diagnosed with Stage IV Non-Hodgkin’s Lymphoma in 2008 and hydrocephalus in 2009.) Much of this is a disconnect between people and their medical professionals due to the way healthcare is run in the United States. Some of it is the person with the ailment being unable to find words to describe what is happening to their bodies. General health education in our country is not a subject that is well taught in schools, and usually only “geriatric”/sensational ailments are discussed on the news. Cancer, Parkinson’s, Alzheimer’s, diabetes, COVID-19 - these are all medical diagnoses regularly discussed. But what about all of the others? Case in point, in January I had an ocular migraine. I had never had one before, and I had no idea what the symptoms were. My husband took me to the emergency room at the urging of my neurosurgeon’s office because we both thought I was having a stroke. I’m 36. The thing is, young people can have strokes, it’s not just something the elder community experiences. A week after I went to the E.R., I saw my neurosurgeon. He told me it was because I was doing too much and not taking care of myself. Recently, and at his urging, I saw a neurologist who explained my symptoms actually added up to an ocular migraine.

(I should mention that in the world of neurosurgery, my neurosurgeon is pretty fantastic and a friendly, funny guy to boot. A rarity, if I’m being honest. But that didn’t mean he knew what had happened to me. Because I didn’t have the words to explain what did occur.)

Wouldn’t it be amazing if it was less taboo to talk about how bodies function in our society?

The second part of the disconnect in talking about disabled culture in Western society is how we are used by Western culture. Usually as a way to lift up able-bodied communities or as inspiration porn - a term meaning “if I can run a marathon, you surely can live a life as well you sparkling able-bodied person you”. I, personally, have a deep loathing of being someone’s inspiration and follow Stella Young’s viewpoint on many other things regarding living a disabled life. Young was a journalist, activist, and comedian who was born with osteogenesis imperfecta. She is credited with coming up with the term “inspiration porn” in her July 2012 editorial for Ramp Up, an online magazine she edited for the Australian Broadcasting Corporation. Her TEDxSYDNEY (https://www.ted.com/speakers/stella_young) talk in April 2014 boosted that message along with Young’s famous quote: “I’m not your inspiration, thank you very much.”

Within America’s media and fiction, disabled people often serve the purpose of lifting up, terrorizing, or are cured by able-bodied people. For example, within the horror genre, nearly every villain in both movies and books has some sort of physical and/or mental disability that drove them to want to destroy the young, usually beautiful, able-bodied characters that encounter the “deranged” disabled person. Popular examples of these characters are Jason Voorhees from the Friday the 13th franchise (as a child he had mental disabilities and hydrocephalus), Freddy Kruger of the Nightmare on Elm Street series (burned over 90 percent of his body), and the Halloween villain Michael Myers (who is kept in a mental institution, though never given an exact diagnosis). Even Frankenstein, Dr. Jekyll and Mr. Hyde, and Captain Hook play into this only-villains-have-disabilities trope.

“Despite studies existing on how disabled people are more likely to experience violence than able-bodied and neurotypical people, horror films continue to perpetuate the notion that people with disabilities are a threat to the safety of the public and particularly women who embody societal ideals of beauty and perfection,” writes Sarah Garcia in an October 29, 2018 article for Fem Magazine (https://femmagazine.com/villainizing-bodies-and-minds-ableism-in-horror-movies/).

I have experienced violence in my life because of my disabilities. As a child and adult.

Actors often play characters with disabilities in a bid for an Oscar nomination. These actors are no longer playing characters that fall in the BIPOC minority, so why is it fine - even encouraged and rewarded - when they play characters from my community? Plenty of talented actors and actresses who just so happen to have disabilities are available. I promise you, someone in a wheelchair is probably sincerely hoping to land that role, is probably talented enough to do it, but still doesn’t get it.

I cannot express to you how discouraging and enraging this knowledge is.

“Even when people with disabilities are included, the inclusion is usually limited to those with a visible disability, such as someone who uses a wheelchair, crutches, a Seeing Eye dog, or American Sign Language, in order to ensure that everyone notices the inclusion. That means that people with invisible disabilities, such as those who are hard of hearing, are seldom included and therefore their disability is forgotten. Today, no one would consider having a white person play a black person by wearing black face, yet able-bodied people regularly portray people with disabilities.” This was part of the 2016 HuffPost article It’s Time to Include Disabilitiesiin Diversity written by Janice S. Lintz (https://www.huffpost.com/entry/its-time-to-include-disab_b_13643060).

Books, TV shows, movies love to cure disabled people, whether through futuristic medical procedures, or the simple act of killing us. Once the disabled person has served their purpose of holding up the able-bodied characters, there is really no need to keep us around as we are.

I have lived my life in books and movies. Recovering from multiple operations, treatments, and procedures as a child and adult, books have always been a comfort to me. (I carried Lirael by Garth Nix in my backpack to every chemotherapy and radiation treatment.) I come from parents who are major movie geeks and married one myself. So it is nearly indescribable to explain the pain and fury in seeing my minority used in such horrifying ways. As a child, it told me (along with most of the population of the schools I attended) that I wasn’t a person, that I didn’t matter unless I was holding up someone else with an able body.

Fast-forward to 2020 and the COVID-19 pandemic. Suddenly companies are able to let everyone work from home. Something the disabled community has requested, many literally begged for, since the dawn of the computer age. We were always told it wasn’t possible. Until it was.

Those of us that run small businesses are requiring masks per the Americans with Disabilities Act’s instructions. And yet I’ve already been challenged on this requirement. Because the person making the complaint said I wasn’t doing enough to support the disabled community who can’t wear masks.

Are. You. Kidding. Me?

Where is the protest for the disabled community demanding able-bodied people stop adopting our laws for their own use? Where is the peaceful march demanding we are treated like people, as the BIPOC and LGBTQIA+ communities are demanding? Where is the outrage at how disabled people are treated in spaces where we should be safe? Where are the able-bodied allies who fight for our freedoms along with their own?

These protests we are seeing today, on a global level, grew from groups demanding more, demanding better for their community. I am demanding better. I demand more for my community and I am tired of waiting for the “right moment”. I am raging at being told to wait my turn. For people with disabilities no “right moment” has ever presented itself.

I am done waiting. I will speak my truths. I will use my rage. I will be silent no longer. Are you ready? Because I’m rallying the disabled community. And we will be heard.

Author biography: Annie Carl was born with Lipomeningomyelocele (a rare spinal birth defect that, according to Google, 1 in 4,000 babies are born with) and is a Stage IV Non-Hodgkin’s Lymphoma survivor. She owns and runs The Neverending Bookshop, a feminist, activist genre bookstore in Edmonds, WA. She regularly visits writing groups and trade shows to advocate for disabled diversity and positive representation. When not running an award winning bookstore, Annie reads massive quantities of science fiction, fantasy, and romance; knits; and hangs out with her very silly family and friends.