July 13: John Clare (1793-1864)

[Image description: Engraved portrait of the poet John Clare, shown with tousled hair, wearing a suit with a heavy coat, vest, and a shirt loosely tied up with a print kerchief]

English poet John Clare was born on this date in 1793, in Helpston, near Peterborough. He was the son of a laborer, and himself a laborer, a gardener, who wrote poetry when he could, to be published by an acquaintance. His earnings were never enough to adequately support his wife and seven children (and his alcohol consumption); he experienced depression and later erratic behavior. In 1837 he was placed in a private asylum. After four years, he tried to live at home again, but his wife soon committed him again, this time to the Northampton General Lunatic Asylum, where he eventually died in 1864. It was at Northampton that he wrote his best known poem, "I Am," reflecting his sense of being abandoned by friends and loved ones, his vivid torments, and his longing for rest, "untroubling and untroubled."

I AM
John Clare

I am; yet what I am none cares or knows,
My friends forsake me like a memory lost;
I am the self-consumer of my woes,
They rise and vanish in oblivious host,
Like shades in love and death's oblivion lost;
And yet I am! and live with shadows tost

Into nothingness of scorn and noise,
Into the living sea of waking dreams,
Where there is neither sense of life nor joys,
But the vast shipwreck of my life's esteems;
And e'en the dearest--that I loved the best--
Are strange--nay, rather stranger than the rest.

I long for scenes where man has never trod;
A place where woman never smil'd or wept;
There to abide with my creator, God,
And sleep as I in childhood sweetly slept:
Untroubling and untroubled where I lie;
The grass below--above the vaulted sky.

Edna Knight, MBE!

From a parent support newsletter I got this morning by email:

We are thrilled to announce that Unique Founder & Life President Edna Knight has been made an MBE in the Birthday Honours List 2008. Having founded the group in 1984 with 5 families, Edna has been a major driving force in its development. The award is for voluntary services to people with a chromosome disorder and their families. Congratulations Edna on a richly deserved award.

I joined UNIQUE when my son was just a year old--because he has a rare chromosome disorder, and way back then (I mean 1996), there were no online discussion boards or blogs or listservs for families to meet each other and learn from each other. At the time, UNIQUE didn't have a way of collecting subscription fees in US dollars, so they just sent me the newsletter for free, for years. It was something amazing at the time, to see the founder's letter on the front page, and discover that she had raised two daughters with rare chromosome disorders (and two without, as well)--they were all adults by the time I subscribed, and just finding that they were living and thriving young women was a huge encouragement when I was first starting out. UNIQUE expanded my understanding of what was possible, and what was happening in the world, when I might otherwise have felt very isolated and fearful. So congratulations, Edna Knight!

Video: "Coming Out"

This isn't brand new (it was on the festival circuit in 2007, and first televised in January 2008), but I just learned of it (at the Berks, thanks Susan). And Jana has requested "things to make me laugh," so here's "Coming Out," an award-winning short film from BBC2's See Hear, written by Charlie Swinbourne and directed by Louis Neethling. David Hay and Debbie Norman are playing the son and mother.



Visuals described: A nice suburban kitchen, mother cooking tea, toast, frying something for breakfast. Twenty-something son comes into the kitchen. He signs his lines; all the dialog is subtitled:

Mum!
What darling?
I've got something to tell you.
All right dear, just a minute.
I've been wanting to tell you something for a some time now....
This sounds serious.
It is serious!
Are you ill?
No, it's nothing like that.
It's about me. Who I am.
What do you mean?
The thing is that I...I'm different to other people.
Oh, I know that, you're my special boy! Always have been.
No, I mean really different. I've know for sometime now, but... I'm deaf.
No you're not, just don't concentrate enough, always away with the fairies in your own little world...

[I'm not sure about the legalities of typing out the whole six-minute script--I wish there was a transcript somewhere online already! Ideas?]

Charlie Swinbourne's "Four Deaf Yorkshiremen" is also on YouTube. (This one has no audio at all, all subtitles.) Fookem and Bug has an interview with Swinbourne.

Conference: Before Depression (19-21 June)

[Image description: A blue background fades to white, with a grey spiral around a torn bit of dictionary with the words "Melacholy. adj." and "1. Gloomy; dismal" legible, and the title "Before Depression, 1660-1800" beneath that in blue]

This conference program titled "Before Depression: The Representation and Culture of Depression in Britain and Europe, 1660-1800," caught my attention today--the conference itself is just part of a three-year project that also includes an ongoing lecture series, planned publications and an exhibit this summer of visual representations of depression in the 18th century. Too bad for me it's all happening at the University of Northumbria and the University of Sutherland--but good for any of you who happen to be in that neighborhood. If you attend any component of this project, I'd love to hear more about it.

Why I love biographical dictionaries (#2)

(Here's #1.)

A few sentences from the first paragraph of the entry on chemist Ida Freund (1863-1914), in the Oxford Dictionary of National Biography online; entry written by Marilyn Bailey Ogilvie:

"During her youth she lost a leg as a result of a cycling accident and the disease that followed. The artificial leg that replaced it was never very satisfactory. Throughout her life she moved about by means of a tricycle worked with the arms."

And I can't find any other mentions of Freund's tricycle anywhere. Anyone know more about it? There has to be an interesting journal article waiting to be written here--she was a chemistry demonstrator and then lecturer at Cambridge, 1887-1912, a gifted teacher, supporter of women students in the sciences, author of two textbooks. Her colleagues or students must have made some mention of her tricycle over the years?

Wheelchair tipping?!?!

In not one, but two, countries, intentionally tipping someone's wheelchair has come up in the news lately. What's the deal? In the London Times in January, Rod Liddle suggested in an opinion piece that

"Next time you see a young person in a wheelchair, tip it over and drag the occupant to the nearest job centre, lecturing him or her all the while on the dignity of labour."

Because the only reason a young person would use a wheelchair is to avoid employment, right? (Liddle has a long record of horrid statements about disability, but this one explicitly incites violence against disabled people, an escalation on his part.)

Moving across the Atlantic, the idea is already being put into practice--by one deputy sheriff in Hillsborough Co., Florida. Brian Sterner, a quad, was stopped on a traffic violation on 29 January and taken to the station for booking. Deputy Charlotte Marshall Jones didn't believe he was really paralyzed, so she dumped his wheelchair forwards, and he (surprise!) fell to the ground. The incident was caught on the office surveillance camera (video here, but be warned--it's distressing to see), and she has been suspended without pay. Brian Sterner, it turns out, is the former director of the Florida Spinal Cord Injury Resource Center, based in Tampa. He plays wheelchair rugby with the Tampa Generals, and he's working on a PhD.

So, to recap, some young people use wheelchairs AND work AND drive. And throwing someone to the ground is a dangerously stupid way to prove anything.

Stop Eugenics video and the HFEB

The HFEB, or Human Fertilisation and Embryology Bill (the full phrase sounds ominous already, doesn't it?) is a piece of legislation before the British parliament that would make it illegal for couples or individuals to choose for an "abnormality." Clause 14 spells it out:

Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—

(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition,

must not be preferred to those that are not known to have such an abnormality.

This would prohibit, say, a Deaf woman from choosing a deaf donor to increase the chances of her child being deaf like her. There are myriad other troubling possibilities. English bloggers Grumpy Old Deafies are all over the case. Today they posted a video made in protest of the HFEB by stopeugenics.org:





Transcript of the title cards, which appear in white against black, between scenes of a line of paper cutout dolls being cut away from the line, one by one, with large scissors:

Nobody's perfect.
Nobody.
Not even you.
Stop Eugenics.
Just stop.
stopeugenics.org

More videos from the same campaign are here.

November 15: Charlotte Mew (1869-1928)

English writer Charlotte Mew was born on this date in 1869, in London. Her sister Freda was institutionalized at age 19, in an asylum on the Isle of Wight, and remained there almost 60 years, until her death in 1958. Their brother Henry also died in a lunatic asylum in 1901, at the age of 35. Charlotte and her other sister Anne believed they might also become mad: "She and her sister had both made up their minds early in life that they would never marry for fear of passing on the mental taint that was in their heredity," wrote a friend. To another friend, Charlotte described her own "queer uncertain mind." Charlotte Mew died by suicide in 1928. This is one of her poems about madness, segregation, and stigma, and the belief that disability was "the incarnate wages of man's sin":

On The Asylum Road

Theirs is the house whose windows---every pane---
Are made of darkly stained or clouded glass:
Sometimes you come upon them in the lane,
The saddest crowd that you will ever pass.

But still we merry town or village folk
Throw to their scattered stare a kindly grin,
And think no shame to stop and crack a joke
With the incarnate wages of man's sin.

None but ourselves in our long gallery we meet,
The moor-hen stepping from her reeds with dainty feet,
The hare-bell bowing on its stem,
Dance not with us; their pulses beat
To fainter music; nor do we to them
Make their life sweet.

The gayest crowd that they will ever pass
Are we to brother-shadows in the lane:
Our windows, too, are clouded glass
To them, yes, every pane!

We do know better

We may call on the surgeon for any act upon an individual which is to benefit him. We may not treat him as we do with our cattle, for the benefit of ourselves or the state.

--Alexander Johnson, "Report of the Committee on Colonies for and Segregation of Defectives," Proceedings of the National Conference on Charities and Correction, 1903.

Happened upon this quote in an article I've assigned for my online course in US disability history this week. We're reading about the history of eugenic sterilization laws, policies, and practices this week. The idea that all disabled people, all convicted criminals, all poor folks should be sterilized once made sense to a frightening lot of Americans. It's heartening to know that, even at the height of the eugenics movement, some folks realized it was wrong, and said so, like in the quote above. Johnson and his committee were all heads of state schools for "feebleminded" children, and they all objected to the idea that sterilization should be added to their duties. In the end, their position was vindicated, but not before many thousands of routine sterilizations were performed in the next several decades, often without consent or even truthful explanations.

I wish this quote wasn't quite so timely. I wish folks didn't talk about major surgery as a casual thing (even when it's medically necessary, it's a big deal, with plenty of pain and risk, no matter what it looks like on TV). I wish the child's rights and interests were taken seriously. I wish folks weren't so squeamish about ordinary bodily functions. I wish people wouldn't use the "unless you're a parent like me you can't understand" line of defense, because that presumes parents like me understand, and I don't.

I wish we knew better. Oh wait, we do.

More on the same subject (I'll be updating these links as necessary):
Biodiverse Resistance
Falling Off My Pedestal
Miss Crip Chick's Weblog
FRIDA
(and more from FRIDA, and more still from FRIDA)
Wheelchair Dancer
(and more from Wheelchair Dancer)
My Beautiful Wickedness
Tiny Cat Pants
The Life and Times of Emma
Brown Femipower
(and more from Brown Femipower)
The Strangest Alchemy
(and more from The Strangest Alchemy, and still more from The Strangest Alchemy)
Ryn Tales Book of Days
Jemma Brown (at Ouch!)
Kintropy in Action
Wheelie Catholic
Planet of the Blind
Feministe
Growing Up with a Disability
Not Dead Yet News & Commentary
Terrible Palsy
Andrea's Buzzing About
The Gimp Parade
Arthritic Young Thing
Pipecleaner Dreams
A Tedious Delusion
A Renegade Evolution
Lisy Babe's Blog
Mind the Gap Cardiff
Diary of a Goldfish
Turtlebella
Bad Cripple
Big Noise
Quench Zine
Modus Dopens
Sunny Dreamer
Antiprincess
Walking is Overrated
Nickie's Nook
Benefit Scrounging Scum
Fetch Me My Axe
Text and the World
Bastante Already
R. Mildred
The Voyage
Maman Poulet
The Seated View

NOTE: After the last round on this topic, when we had lovely comments comparing people like my son to doorstops and turnips (thanks so much, CNN, for sending the anonymous hate this way), I'm just not going to respond to anonymous or ugly comments. In truth, I might not respond to any comments. I've got a carnival edition to assemble.

Next Week in London: Journeys into Madness, 1850-1930

From the H-Net Announcements digest:

Journeys Into Madness: The Representation of Mental Illness in the Arts and Sciences , 1850-1930

The conference Journeys into Madness: Representing Mental Illness in the Arts and Sciences, 1850-1930 will take place at the Wellcome Collection Conference Centre, London, on 11 and 12 October 2007. This conference has been supported by the University of Plymouth, the Wellcome Trust and the British Academy. To book your place, please contact Gemma Blackshaw. Payment can be sent electronically or by post.

The program includes papers on "male hysteria," the rest cure, asylum photography, German psychiatry, patients' writings, farm work, art brut, avant-garde film, asylum art, trauma... check it out. Even when I can't possibly attend, I love looking at conference programs, seeing who's doing what...

August 15: John Metcalf, aka "Blind Jack" (1717-1810)

Colorful, long-lived Englishman and civil engineer John Metcalf was born on this date in 1717, in Knaresborough, north of Leeds. When he was six, young John survived smallpox, but lost his sight to the disease. His family, thinking he'd have limited career choices, arranged for him to be taught the fiddle, and he learned to play well. He also knew a lot about horses, cards, and hunting, and was a good swimmer and diver. He married and was the father of four. He was briefly in the army in 1745 (not in combat, but moving guns and assisting a recruiting sergeant).

As a young man, he walked to London ahead of his travel companion, and in his twenties he carted fish and other goods from the coast to Leeds and Manchester, or between York and Knaresborough. His business became a stagecoach line, and he drove the coach himself. So he knew the roads very well when, in 1765, he won the contract to build three miles of new road between Minskip and Feamsby. He would, eventually, build about 180 miles of roads, noted for their good drainage and foundations.

Metcalf retired in 1792, but in 1794 he walked from Spofforth to York to dictate his life's story to a publisher. He died in 1810, at the age of 92.

[Image above: a drawing of Metcalf, made late in his life by J. R. Smith, 1801; for use in the published editions of Metcalf's autobiography. He's shown as a robust figure, holding a cane and wearing a hat and coat, with white hair curling down over his ears and collar]

Royal Albert Hospital Archive

[Thanks to Iain Hutchison for this tip, via H-Disability.]

The cocoa that they gave us they say is mighty fine
It’s good for cuts and bruises and tastes like iodine
So I don’t want no more of Royal Albert life
Gee ma I want to go home

--A verse from the "Cocoa Song," related by former resident Stanley Byers, right, in an interview in the 1980s

Unlocking the Past is a fine online archive of images, interviews, texts, and video from the Royal Albert Asylum, Lancaster, England, an institution established in 1870, originally as a training school for disabled children, and later becoming a custodial institution for adults with cognitive disabilities. It was closed in 1996. The archives include patient memories like the song above, images of the Royal Albert scouting groups, video, audio, and transcripts of interviews with former patients and staff, architectural descriptions and images, a timeline, an article archive, and so on. It's an ongoing project, inviting contributions from anyone with material to share. Have a look or a listen.

June 28: Margaret M'Avoy (1800-1820)

The Oxford Dictionary of National Biography is literally full of kings and queens and Nobel Prize-winners and such. But then there are the other folks who get a listing....

M'Avoy, Margaret (1800–1820), impostor, was born at Liverpool of respectable parentage on 28 June 1800. Of sickly constitution, she appeared to become totally blind in June 1816. Her case attracted considerable contemporary attention from the readiness with which she was alleged to distinguish, by touch, colours of cloth, silk, and stained glass. She could also accurately describe the height, dress, bearing, and other characteristics of her visitors, and even decipher letters in a printed book or manuscript with her fingers' ends, so as to be able to read with tolerable fluency. Sir Joseph Banks, the naturalist, asked William Roscoe of Liverpool to investigate; Roscoe concluded that M'Avoy could see, and that her demonstrations were an elaborate fraud. She died at Liverpool on 18 August 1820.

[by] Gordon Goodwin, rev. H. C. G. Matthew

The dictionary entry gave only a few sources on M'Avoy, all from the 1820s and 1830s. So I looked around elsewhere online, for more recent commentary about her. She's apparently mentioned in Anna Krugovoy Silver's Victorian Literature and the Anorexic Body (Cambridge UP 2002), as an illustration of the other "spectacular behaviors exhibited by adolescent girls" in the nineteenth century; and in this 1999 conference paper on Harriet Martineau's contemporaries, but that's about it. Amazon mentions two older, related publications, Remarks on Joseph Sandars's 'Hints on Credulity,': On the Subject of Miss M'Avoy's Blindness by "Scrutator"--looks to be a 19c. pamphlet, 64 pages; and the original 69-page work by Joseph Sandars, too, Hints to credulity! or, An examination of the pretensions of Miss M. M'Avoy, occasioned by Dr. Renwick's "Narrative" of her case.

So now that gives me two more names, Joseph Sandars and Dr. Renwick (and 'Scrutator' too, of course). Sandars seems pretty easy to track down: a Joseph Sandars was a prominent Liverpudlian, a Quaker corn merchant, backer of the Liverpool and Manchester Railway, coalmines, ironworks, and limestone quarries. If it's the same man, then why he was writing about Margaret M'Avoy remains unclear. There was a Dr. Renwick who reported one of the first cases of the cholera epidemic that his Liverpool in 1832, as mentioned in this 2005 journal article on the epidemic; might be the same doctor, or a relation. Re-reading the Oxford DNB entry...her case came to the attention of the Joseph Banks, longtime president of the Royal Society? The William Roscoe that Banks asked to investigate M'Avoy's claims wasn't a scientist or a doctor--he was a historian, writer and editor.

But none of these threads seems likely to answer the obvious questions about Margaret M'Avoy. How did she hit upon faking blindness (or more precisely, claiming to see colors and read printed text with her fingers) as her particular 'spectacular behavior'? How was she treated by her older, male examiners, and what fate awaited when she was declared an impostor? Why did she die the summer of her 20th birthday?

Just riffing on a too-short biographical note, on the occasion of Miss M'Avoy's birthday.

Good news from British disability bloggers

The Goldfish, MarmiteBoy, and Charles Dawson shared the good news over the weekend that their fellow British disability blogger, The Editor at the Perorations of Lady Bracknell, was awarded an MBE by Queen Elizabeth II recently. The honor wasn't actually for her blogging work, of course (though that is excellent, too); The Editor MBE has long been active in shaping British disability policy and improving workplace conditions for disabled people. Congratulations to The Editor!

Why celebrate?

Sigh. Commentator Rod Liddle in the Times of London thinks the public display of Alison Lapper Pregnant is about "the fashion for disability," which he considers a "delusional ideology," and asks, "Why would we wish to pay tribute to disability; if we're being honest, isn't disability bad, wouldn't we rather not have it at all?" The argument sounds very undergraduate. So let's walk him through it like an undergraduate, shall we? This argument is the same as saying that we shouldn't celebrate any minority experience, because it's just so much easier and more pleasant to be a member of the majority. Why celebrate being a woman? It's clearly so much more noble and exciting to be a man like, say, Admiral Nelson (whose Trafalgar Square statue is fine with Liddle--he lost the limb and eye in battle, so that's indisputably tribute-worthy).