Content note: includes discussion of COVID-19 and racism
I have so much to tell you. The question is, are you ready to listen?
Because people with muscular dystrophy tend to die of respiratory failure, I’ve long expected to choke to death. These days, coronavirus is stealing people’s breath. If I died this year, my life would be over, but would it be finished? What do I need to say now, here, to you, before I can leave you?
I want to teach you about myself, and in doing so, I want to teach you about yourself.
I lose about one muscular ability a year, though this year it’s been two. Once a muscle is gone, I never get it back. Both dystrophy and aging are defined by loss; my body has traveled a journey all bodies will travel, if they’re lucky. I am the human condition.
My beliefs have traveled a journey opposite from my body’s. I grew up ableist; I believed that disability was only a bad thing. As my muscular dystrophy progressed, I found Disability pride: celebration of capital-D Disability in all its diversity, ingenuity, and abundance of culture.
Disabled is only one of my identities. Another is that I’m a namer by trade, and my professional opinion is that “corona” is a beautiful word. “Corona,” which the sun wears and the moon brings to light with its darkness; “crown,” whose halo defines the anatomical plane through which we move forward, or backward.
World, you have moved forward. You’ve let me through many doors. So, when I tell you why I’m angry with you, please remember that I still love you.
Every time I go through a door, I’m never truly welcome on the other side. I do my best to get by without ramps, without captions, and without your respect, World, because I fear that if I say something, you’ll regret allowing me in. Sometimes, I feel so tired that I finally risk asking for inclusion. And then, your first answer is either “No” or “Not right now.”
It’s been a long time since people spat on me and tapped cigarette ashes on me. They wronged me on purpose, but World, it hurts me more when you leave Disabled people out every day, even and especially by accident.
As coronavirus began, your media coverage focused on how most people shouldn’t worry. If it mentioned disability at all, it was casually, and as a standard casualty. In the months since, your indifference has proven lethal. Your ableism compounds with your racism against Black and Indigenous communities. About 40% of US coronavirus deaths are linked to the segregated living facilities known as nursing homes. Intellectually disabled and autistic people are twice as likely to die from COVID-19. In the UK, up to two-thirds of people who have died are disabled. What’s killing us isn’t just the virus; it’s how you never wanted us around in the first place. World, I wonder whether our death toll is simply a price you’re willing to pay.
How much do I and my Disabled comrades have to educate, to struggle, to die, before your ignorance counts as willful? When does “I just didn’t know” become “I just didn’t care”?
The paradox of human connection is that no person will ever understand what it’s like to be another, yet to be understood is what we want most of all. Empathy is a myth, and that is a tragedy. World, when we tell you you’re hurting us, please believe us, and when you see us lashing out at you, please forgive us.
Abled people, friends even, have told me I should just be grateful. But can I not be both grateful for the present and hopeful for a better future? Abled people have told me I shouldn’t complain. Do they see that I complain not just for myself, but for the one billion people like me, whose number they will someday join?
I have always had to prove myself. Disabled people always have to justify our existence—by inspiring you, by amounting to dollars or votes, by showing how our curb cuts help you with your rolling luggage, by dedicating a month every year (National Disability Employment Awareness Month) to reminding you we can work. You don’t value us unless we add value for you.
World, I imagine a future in which you give Disabled people your respect without making us beg for it.
In which we don’t have to hide our pain for your comfort.
In which we tell you our needs, and your first instinct is to help us, not question us.
In which we don’t even have to ask anymore, because you asked us first.
In which you offer us the abled privileges that we don’t even know to ask for.
In which we can take access for granted.
In which our innovation is not for your exploitation.
In which our daily dignity doesn’t depend on keeping you in a good mood.
In which we who need the most support are not the ones systematically excluded from it.
In which we can get in through the front door, not just the separate-but-equal side entrance.
In which you do nothing about us without us, and nothing without us at all.
In which we can stop telling you about our needs and start telling you about our dreams.
In which you welcome us.
A hundred years ago, someone like me could only imagine being where I am. Today, I can only imagine a world without ableism. And a hundred years from now, I want someone with my disabilities—because there will always be disabilities like mine—to imagine a world so inclusive that I, whose livelihood is made of names, do not have the words to describe it.
World, I know I’m just a whisper in your history. When I’m gone, you’ll forget me eventually, and I’ve made my peace with that. But as I live and breathe, let me say my piece:
You may forget me, but don’t forget my people. Don’t forget, about us.