Book review: Too Late to Die Young: Nearly True Tales from a Life, by Harriet McBryde Johnson

Too Late to Die Young: Nearly True Tales from a life
Harriet McBryde Johnson
2005 Picador, New York NY

“I used to try to explain that in fact I enjoy my life, that it’s a great sensual pleasure to zoom by power chair on these delicious muggy streets. But it gets tedious. God didn’t put me on this street to provide disability awareness training to everyone who happens by…

“For me, living a real life has meant resisting these formulaic narratives. Instead of letting the world turn me into a disability object, I have insisted on being a subject in the grammatical sense: not the passive “me” who is acted upon, but the active “I” who does things. I practice law and politics in Charleston… I travel. I find various odd adventures. I do my bit to help the disability rights movement change the world in fundamental ways.

“And I tell stories.”

And she does. Magnificent stories. Stories that had me glued to the computer screen for an entire weekend after discovering her published essays online, then resolving to find a copy of her book and devouring it in the space of one day when it finally arrived.

Harriet McBryde Johnson’s memoirs begin with her realisation at age three or four that – according to popular telethon wisdom – she will die young. But at the same time, life is not over – “When I die, I might as well die a kindergartener,” she reflects. This experience will help inspire her later protests against telethons which are “all about stirring up pity when we don’t want pity”. She recounts her teenage fascination with Dracula, whose story shows that ‘death is not only for people like me’, and her surprise that others appear unaware of this.

This probably makes the essay sound morbid. It isn’t. Like all the essays in this book, it is thought-provoking, fascinating and often hilarious.

The essay which riveted my attention when I found it online appears in this book as “Unspeakable Conversations”. It recounts Harriet McBryde Johnson’s conversations and email exchanges with Professor Peter Singer, an Australian-born ethicist who “insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was…”.

She talks about the surreal experience of speaking to his Practical Ethics seminar class about infanticide and ethics, and recounts how, during dinner, her elbow slips, and she requests Singer to assist her by replacing it on her knee. Friends in the disability rights movement are appalled that she would allow him to provide even minor physical assistance. But “I didn’t feel disempowered; quite the contrary, it seemed a good thing to make him do some useful work. And then, the hard part: I’ve come to believe that Singer actually is human, even kind in his way…”. One does not have to be a monster to believe monstrous things.

On a lighter note, McBryde Johnson describes her trip to Cuba to attend a disability rights convention, and her experience with a different political system and approach to disability rights – as well as her ironic reflections on visiting a special school similar to the one she attended as a child. “We, too, used to act cute and engage visiting dignitaries in conversation. But when the visitors left, we had a contest among ourselves: Who’d met the stupidest visitor? Bonus points for a pat on the head!”. She hopes that she “will not be named the Stupidest Visitor when the kids run their contest”.

I could go on. And on. Because I enjoyed these memoirs immensely – they made me laugh and they made me think, and they gave me an insight into the everyday aspects of living with a disability. The last essay in the book is lyrical and sensual – a poem on the pleasures of life, both those of the non-disabled world and those “that are so bound up with our disabilities that we wouldn’t experience them… without our disabilities”. This celebration is a fitting end to a book that is in many ways a celebration of the richness of life.

Harriet McBryde Johnson died on June 4th of this year, aged fifty. For a taste of her writing, you can visit http://www.cripcommentary.com/harriet/, a memorial site which, among other things, contains links to many of her essays online. But I suggest you read the book. You won’t regret it.

Addendum: I wrote this review for a newsletter, but in the course of writing it, I also went to McBryde Johnson’s website and read a *lot* of her essays, and blogged briefly about them:

I’m now obsessively reading everything of hers that I can find. But this article is completely absorbing – it’s about conversations and email discussions and meetings she has had over the years with Peter Singer – a rather notorious Australian ethicist who argues that since we allow termination of pregnancy for fetuses with disabilities, and since we allow newborns with serious disability to be ‘allowed to die’ by not giving them lifesaving medical assistance, we should also, logically and ethically, allow parents the choice of ending the lives of disabled newborns. I shall not go into his arguments for this. I had to read one of his books on the subject for a genetic counselling essay, and that was quite enough (I should note that the previous reader appeared to have been a fundamentalist christian with no inhibitions about writing in library books, which added a certain something to my reading experience). McBryde Johnson, as a person with MD, was once one of the very babies whose euthanasia Singer would advocate, on the basis of quality of life. As you can imagine, they don’t see eye to eye – but her description of their interactions is fascinating.

The other thing that struck me (in a separate article) was her description of visiting an exhibition at a Holocaust museum and seeing a really, really fantastic wheelchair:

Then I see the wheelchair. It’s similar to other prewar wheelchairs I’ve seen, but there’s something unusual about the frame. Is this a tilting mechanism? A fancy suspension system? Looks like fine German engineering. I like vintage wheelchairs. An obsolete Everest & Jennings drive belt hangs in my office as a bit of nostalgia, like an old wagon wheel in a barbecue shack. I have an urge to jostle the chair, to see what that frame does. The sign mentions a German institution. So, no single owner. But even in institutions, people manage to bond with chairs. A state-owned chair may be occupied by the same person every day, parked beside that person’s bed at night. Maybe the chair was used by someone with cerebral palsy until he died, then someone with a stroke until he died, and on down the line, until.. . .until they all died?

The people who used this wood-and-metal survivor probably loved it, liked to move about even as they were sucked into the nightmare. The nightmare began when the state removed them from their families, concentrated them in institutions. The same state provided them with beautifully engineered chairs and then killed them for eating up the resources of the “fit.” (full article here)

It’s the last line which is the kicker – that the same, really state-of-the-art, science that could so perfectly design this wheelchair could also decide that those who need it were not worthy to live is, to me, both chilling and paradoxical. Presumably, the minds designing and the minds making this decision were not the same – but the culture was. And let’s not forget that pretty much every western country was into eugenics before the Nazis took it to its ‘logical’ conclusion…

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