R.I.P. Harriet McBryde Johnson

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I only knew her from her writing, but I cried when I heard.

And I’m still having trouble believing she’s dead. She was so fundamentally there, and now she’s not there. I’ve edited this to include a lot of the links that were missing last night, plus a quote.

Unspeakable Conversations is her most famous article.

The Disability Gulag is another.

Not Dead At All is another.

She wrote a book called Too Late to Die Young: Nearly True Tales from a Life. One excerpt is here.

She wrote another book, this one fictional, called Accidents of Nature.

She did a talk at the Holocaust Memorial Museum called Medical Ethics: Legitimizing the Unthinkable, and she answered questions like What is a disability? and Can we talk about cure?, Why as a kid did we protest telethons, and So let me ask you, when you think about this question of cure and what you saw in Deadly Medicine.

New Mobility named her Person of the Year in 2004.

I’ll end this with a quote by her from Too Late to Die Young. I wish all autistic people who think that they’re non-disabled just because they find pleasure in being autistic, would read it and rethink what they think they know about the experience of disability. I think it exemplifies the core of what she was trying to do, what a lot of us are trying to do. And in the end it speaks for itself:

My path is constrained but endlessly varied. I watch the sun move up in the morning sky and in and out of clouds, take in the changing light that constantly reinvents the cities classic, composed beauty. I feel the moist air roll over my just-washed skin, breathe in the odors of sea and flowering trees and restaurant grease. Some of the best mornings are the mornings when nothing happens, when there is no story but the continuing relationship of this old city with the ocean that roars just out of sight and with the living jungle that tentatively tolerates our existence here.

How is it possible that nondisabled people tend to feel sorry for me? It still takes me by surprise. Peter Singer couldn’t imagine a disabled child enjoying a day at the beach and he’s hardly alone. The widespread assumption that disability means suffering feeds a fear of difference and a social order that doesn’t know what to do with us if it can’t make us fit its idea of normal. When we seek what we need to live good lives as we are, we come against that wall. Why bother? the thinking runs; all they can do is suffer. When nondisabled people start learning about disability, what seems most startling, most difficult to accept, is the possibility of pleasure.

For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.

But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.

I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.

But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that might seem a bit odd.

Let me give some examples.

John Hockenberry rolls across the Brooklyn Bridge self-propelled in a manual wheelchair. As he describes it, it’s a high no one but a hotshot para can really know.

A nation within a nation, of Deaf people, capitalizes its name to demand recognition as a language group, equal to any other in dignity and ferocious beauty.

Barry Corbet, a hotshot para now falling apart, is stuck in bed for several weeks with a pressure sore. As he lives with one marvelous view, he says life doesn’t go away; where would it go? he says life has never been richer or more juicy.

In an essay on smell, Helen Keller wrote that she could never warm up to another person who did not have a distinct and recognizable body odor.

After decades of torment, Professor John Nash recognizes his delusions for what they are and lets voices and visions and mathematical creativity cohabit in a mind unlike any the world has ever known.

My friend Kermit, a quad on a budget, goes out to lobby the legislature and finds a coffee under way. He can’t grasp with his hands so he makes a legislator feed him a donut. The last lobbyist out removes his clip-on tie.

At a summer camp, a mentally retarded boy badgers a girl in a wheelchair to teach him to play checkers. He knows he’s slow and she’s bored, but he won’t give up. Then something clicks and her explanations make sense at last and he sees the patterns and wins the game. For the smart girl in the chair — for me — it’s a humorous, humbling lesson. For the slow boy, there’s joy in pushing his intellectual limits. The peculiar pleasure is unique to each of us, but it’s also shared; the sharing makes a bridge across our differences.

Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body — imperfect, impermanent, falling apart — is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.

Some people, disabled and otherwise, conceptualize a self distinct and apart from the body. I may at one time have done so. I’m not sure. I know it is somehow possible for me to talk about me and my body as though separate, even though my mind and heart say we are one. At this stage in my life, my body constantly makes its presence known as needed, telling me with an urgent pain to deal with a wrinkle under my seat belt, or reminding me with a tremble or ache or flutter of its desire for food or rest or some other pleasure. Now the body I live in doesn’t only affect me. It is me.

The nondisabled world tells disabled people generally that our lot is unavoidably tragic, and if we’re smiling, we’re smiling through tears and despite suffering. In the face of these powerful social forces, I believe that living our strange and different lives, however we choose and manage to live them, is a contribution to the struggle. Living our lives openly and without shame is a revolutionary act.

About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

18 responses »

  1. She was really amazing… thank you for making those of us who were not familiar with her aware of this. I am only sorry I didn’t read her work sooner.

  2. “Disability and human rights activist Harriet McBryde Johnson died at her home in South Carolina on June 3.”

    In her home.

    Yokatta.

    We’re very sad to see her go, though.

  3. I hadn’t known about her, but reading through “Unspeakable Conversations”, it looks like she was a pretty awesome person — someone who simply refused to hate.

  4. Thank you Amanda, for this post, the links and the excerpt which was deeply moving. Yesterday I felt discouraged after not finding sufficient support to fight a pity-based fundraising event for autism this week, but she fought for twenty years. Without hate, but with confidence in her cause, values and beliefs. I mourn her passing but her spirit will live on.

  5. speaking of deaths, we lost our grandfather yesterday. He died in his sleep in his apartment in Bombay, India.

    Our sister was going to visit him this coming Saturday……she went to his funeral and oversaw his last rites (cremation and whatever else they do before that) with my aunt and uncle instead. Life goes on……

    I will definitely read this great lady’s work later…..thanks for sharing Amanda. It’s nice to be back on the blogosphere again…..we took an unanticipated break for a while. Not much to write about lately it seems.

    The Integral and Athena

  6. HBJ was one of my heroes, for reasons that are abundantly clear when you follow some of Amanda’s excellent link collections above.

    One brief HBJ story: A few years ago, former US Pres Ronald Reagan died within a week of R&B pioneer Ray Charles. Harriet suggested that those of us frustrated by the wall-to-wall Reagan coverage could lighten our heavy hearts by realizing all those flags at half-staff were really memorializing Ray Charles, an artist comfortable in so many musical genres that he helped us all hear each other’s singing.

    Harriet exemplified the Southern orator: she was simultaneously charming, smart, polite, and incisive. She taught me a lot about the power of rhetoric, which makes the opening sentence in her NYTimes obituary even more nauseating. She’s characterized as “feisty”—a word that’s only applied to women who defy the NYTimes’ opinions of the proper sphere by to taking public political stands.

    May her memory be for a blessing.

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