Guest Post: On "Letter to Amtrak" & "Disabled People Will Have the Power"
Thoughts from the daughter of a disabled man // Thoughts from the fiancée of a disabled man
*This post was originally published on my substack (https://substack.com/@madeleinedubus), and Michael invited me to post it here as well
This week my fiancé wrote an incredibly honest and vulnerable piece:
Since then, I have been reflecting a lot as his partner, and as a woman who grew up with a disabled father. Both men are brilliant, both brave and vulnerable in their work, both widely considered “geniuses,” and both subject to relentless discrimination and marginalization as disabled people.
After reading Michael’s essay, the first thing that came to mind is an essay my father wrote in MEDITATIONS FROM A MOVEABLE CHAIR, his last book, and truly one of the finest collection of essays you will ever read—I’m not just saying that. I really say that as a student of his work, not his daughter. Please go buy it from an independent bookseller and keep him in print!
Me + my dad when I was around 7 or 8 years old (?)…One plus of having a dad in a wheelchair is we were always eye-to-eye.
The essay is “Letter to Amtrak” and it is, literally, a letter he wrote to Amtrak after his experience riding the train from Albany to Chicago where he was not provided access to an accessible restroom. Let’s just let that sink in for a minute.
He sent this letter to the president of Amtrak and the President of the United States at the time, George H. W. Bush, as well as Barbara Bush, Senators John Kerry and Edward Kennedy (he only received a response from Senator Kennedy, and received a form letter from Amtrak with a gift certificate for under $100—an absolute insult considering the abuse to his rights he endured).
In the letter he opens by saying: “I am sitting in my wheelchair, two days before the Forth of July, trying for the third time in four months to write to you of the emotional pain and humiliation of my experience…” The act of writing the letter was emotionally and physically painful, and yet he pushed forward.
Writing of his experience: “I am a fifty-three-year-old writer, a father of six children, a former Marine officer, a voter, a taxpayer, an American citizen, and from Boston, Massachusetts…As I wheeled my chair into the station at Chicago, I looked up at the large American flag on the wall and for the first time in my life I felt that it did not include me, it did not want me. I felt not like a man or a father, but a damaged piece of meat.”
This incident occurred when I was only a couple years old, but the dehumanization of my father is something I remember vividly witnessing throughout my childhood: inaccessible spaces where he would need men to lift him in (suddenly making this broad shouldered former Marine captain with a loud voice and boisterous energy seem small and weak in the eyes of others); there were frequently places where he wasn’t afforded the dignity of using the restroom, and countless times I watched adults speak to him as if he were a child, or flat-out stupid, because he was in a wheelchair.
I grew up fully cognizant of those injustices, and holding within me the painful contradictory knowledge that this profound man—a deeply loving father, a gifted artist, and a miraculous survivor of a horrific accident that happened because he stopped to help people in need—would forever be subject to misperception, marginalization, and injustice, no matter the breath of his artistry or the brightness of his spirit. It’s something a disabled person manages daily, and those who love them endure witnessing over and over.
What’s incredible about my Dad’s letter, and what made me think of it after reading Michael’s essay, is he wasn’t just writing it for himself. If anything, he made it clear from the beginning he didn’t want to write it, but he had to:
“If I were the only disabled person in this country, we could just call it bad luck and forget about it. There are millions of us and we must have access to trains…”
And:
“I want us to be citizens wherever we travel in this country…We’d like to be able to walk, but we can’t. There’s nothing we can do about that. You’ve got to do that for us, the way our friends do, those of us who have friends. Some of us don’t, and you certainly can’t travel alone in a wheelchair on Amtrak. But you don’t travel alone either. Nobody does. We either buy help or receive it from people who love us, or both; and those who are truly alone die, in the spirit and the flesh.”
What he is saying is so real, and for people who aren’t connected to someone with disabilities, maybe it’s just impossible to grasp how serious it is for them to not be protected. And further, how devastating it is emotionally, financially, and physically to be actively marginalized, worked-against. My Dad actually died in debt, owing a ton of money to Medicare—the system did not take care of him whatsoever, you could actually say it worked against him! Shocker. And here he was someone with a big family and friends who supported him, was an active writer etc. Imagine how it is for someone isolated? Someone who can’t work?
It’s all pretty infuriating, but the only thing that helps keep me tethered to the ground and not popping off left and right, is remembering this essay, the clarity of it, and the strength my Dad had to write it.
And when I watch my fiancé field injustices, when people come for him, for us, I remember what I learned growing up:
Anyone who marginalizes a disabled person, whether through a casual and seemingly innocuous patronizing tone, or on a bigger scale by hindering them, inserting themselves, speculating, creating a faux-concern narrative that is only self-serving (aka self-soothing), and interfering with that disabled person’s ability to exist, to have their human rights, express themselves, work freely, and care for themselves—that person is acting out of fear, and to an extent disgust—ah yes, the source of all discrimination: (self) disgust. Discrimination is invisible and insidious, and “othering” someone is a pitiful, deplorable way to create safety for oneself.
The men I watched talk to my brilliant father as if he were a child were scared that they would experience the same fate, that their lives as they knew it could be destroyed in an instant only to be faced with rebuilding as a new, disabled person. Those who marginalize my fiancé do so because they see some part of themselves, some part they don’t like, or they see someone they can’t understand and it makes them uncomfortable, and something about that scares them so they need to control.
More than anything, what I’ve seen in both experiences with these significant men in my life, is that marginalization of disabled people comes from a lack of being able to listen. Because these two men at least, who had/have a platform to speak and the millions of other disabled people who don’t necessarily have that platform, are incredibly articulate about who they are, what they need, what is right, and what is wrong.
To quote my Dad, “Let us gather in dignity, kindness, and grace,” and, let us listen.
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great piece! glad that you have such strong support in your corner ❤️