The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me, and me to the world.
--Harriet McBryde Johnson, Too Late to Die Young
I’m gonna sit at the welcome table, I’m gonna sit at the welcome table one of these days, Halleluia! I’m gonna sit at the welcome table, Sit at the welcome table, one of these days.
“The Welcome Table” is a song that my daughter has been able to sign along with for months now. As many readers already know, Maybelle has Down syndrome. She was born in 2008, into a cultural moment that was ready for her in ways it would not have been even a few decades earlier. In one of my classes recently, a student shared that forty years ago, her sister was born and her mother was told to institutionalize her. A few decades later, shortly after Maybelle was born, I was told, “The College of Charleston is starting a college program for people with cognitive disabilities!” It’s a very different world.
And yet it’s still a world in which many people have a hard time seeing my daughter as fully human, and a world in which many people believe they ought to have prenatal testing so they can be sure their pregnancies won’t result in the births of people like Maybelle. As Harriet McBryde Johnson notes, it’s “a world that by and large things it would be better if people like me [and Maybelle] did not exist.”
I know that the stigma surrounding -- and, indeed, creating the meaning of -- disability persists. I’m aware of it now in a way I wasn’t before Maybelle entered my life. Watching her sign this song recently, I felt how much I want Maybelle to be part of a community where, as one young feminist scholar puts it, “We [can] bring our whole selves to the table.” I want her to sit at a table where she’s welcomed, recognized as a valid and valuable person, and fully included.
I’ve just finished teaching Johnson’s memoir, Too Late to Die Young. Every time I read this book, new parts jump out at me, and as I prepared for class last week, the passage quoted above got caught in my head and hasn’t left. Johnson explains that her “fight has been for accommodation.” She makes this point as she recounts an extended dialogue with Peter Singer, a philosopher who argued -- kindly, but distressingly and persistently -- that people with disabilities, people like Johnson, live lives that are “worse off” and therefore they should be eliminated before (or shortly after) birth, or allowed to commit suicide later. When many of Johnson’s activist cohort criticize her for talking with Singer, she notes that he’s not any more a monster than most of the people she encounters in her life.
One of the moments of real controversy to disability activists is when Johnson sits down beside Singer for a meal. This is during her visit to Princeton, and they dine with students who ask Johnson questions about, essentially, why she deserves to exist. At one point Johnson’s elbow slips, and she’s unable to feed herself. She needs an adjustment. She writes, “Normally I get whoever is on my right hand to do this sort of thing. Why not now? I gesture to Singer. He leans over and I whisper. ‘Grasp this wrist and pull forward one inch, without lifting.’ He looks a little surprised but follows my instructions to the letter.” Some disability rights activists saw this as a flawed endorsement of the humanity of a genocide advocate. Johnson, though, recounts this moment in her book with a kind of wry tenderness.
Interestingly, Singer himself reminisces about their meal, and about his assistance to Johnson, with a similar tenderness in the eulogy he wrote about her for the New York Times. He writes that Johnson’s description of their meal “suggests that she saw me not simply as ‘the enemy’ but as a person with whom it was possible to have some forms of human interaction.” And he identifies her as a person whose “life was evidently a good one.” What happened at their meal was that Johnson brought her whole self to the table, and by doing so, she endorsed Singer’s full humanity, as well. Having a meal together, sitting side by side at the same table, made that possible.
Early in my career at the College of Charleston, Johnson sent me an email, alerting me to the fact that the Women’s and Gender Studies Program I was directing was hosting an event at a venue that was inaccessible to people using wheelchairs. I was a good enough feminist that I recognized the need for a basic level of accommodation, so I made the change. It was a first step for me, a moment when I committed to spaces that were accessible: We’ll have plenty of tables for everybody!
Now, six years later, I’m moving beyond that initial understanding of accommodation. I want accommodation to mean that we are reimagining our communities in significant ways, that we are conceiving of our world as made better -- richer -- more wonderful by the inclusion of all kinds of diversity, including the diversity of physical and cognitive disabilities. I want us to bring our whole selves to the table, one table that everyone has the chance to sit at, a table where we’re all truly welcome.
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