BADD: Skimmed and Overheard...

Some of the striking sentences and bits I came across just starting to skim and scan through the feast of posts for Blogging Against Disablism Day. I'll be adding to this over today and tomorrow--it's too much to read all at once! (I'm focusing on the ones I don't already have in my Bloglines feeds, because it's so much fun to discover a new voice, and there are a lot of new voices participating.)

"That's right, funky business owner -- the mall is more radical than you are." (Willendorf)

"Nobody ever says 'this is what it is like to be 24 and applying for Social Security.' Well, this is what it's like." (Never That Easy)

"So he had to go to a special pre-school and then a special elementary/high school. I found myself wondering if they had a special society hidden away that Tristan would then work and live out the rest of his life in." (Chanelle and Tristan)

"Sometimes I have good days and take the stairs. Sometimes I have bad days and take the elevator. Sometimes I have good days and take the elevator to avoid the chance of my day turning into a bad day. All of these decisions are mine to make, and are no one else’s business."
(Three Square Meals)

"All it would take is truly accessible public buildings and a completely accessible public transport network, and Stephen would never again feel the desperate need to bungee jump over a waterfall, shuffle up a perilous mountain on his bottom, or wheel across the Arctic tundra wearing nothing but a t-shirt emblazoned with the phone number of his charity donation hotline." (An Unreliable Witness)

" It still bothers me when everyone around me uses Healthy Person Logic and applies it to me and my life, because it works in their life and it’s just, to a healthy person, how the world works." (Jay Angel)

"So it is time to say it, and say it every day. There is no normal. There is no normal way to read, or to write, or to listen, or to see, or to get from here to there. There are simply ways of doing things, and the ways which work best for each human individual will vary - based in human capability and human desire and human preference." (SpeEdChange)

"When I applied for disability, the woman said to me, "I'm tired, too, but I still work eight hours a day." I am still furious over that remark." (The View from Room 7609)

"It was seriously, asskickingly empowering to create and post this piece. I love that it ended up so sexy. ...I offer it in celebration of BADD and badass mutant hot people everywhere." (Daisybones)

BADD 2008: Celia's Retreat

This is my 2008 entry for Blogging Against Disablism Day 2o08. In 2006, I wrote about disablism in the suffrage movement, and the invisibility of disabled women in a popular US women's history text; in 2007, I wrote about disablism in North American immigration history, and the death of young George Everitt Green. This year, I'll continue in the nineteenth-century US historical context, but this time at a more intimate scale. I started doing disability history by studying 19c. American families' experiences around developmental disability--this is essay springs from that work.--PLR

Karly is a different being here. Living out of doors in the air which is the health of life to him, he grows sturdy & quiet & all his flying nerves are soothed into a delightful state of calm....he rows in his boat all the day long & is happier than a king.... he fishes & he drives in the flock of cows for milking & he digs his 'riverlets' as he calls them, in the wet sand in the upper cove, & he sails boats & leads a life of bliss generally & is petted & praised by all his kin until his eyes are wide with amazement, that being a kind of thing he isn't at all used to, you know.

--Celia Thaxter to Mary Lawson, in an 1860 letter from Appledore Island

Celia Laighton Thaxter (1835-1894) was an American poet from the New England context; she was close friends with John Greenleaf Whittier, Sarah Orne Jewett, and Annie Fields, among others. She grew up in the Isles of Shoals, a small cluster of islands about ten miles off the coast at Portsmouth, New Hampshire. Her parents ran an inn on Appledore Island. She married her tutor, Levi Thaxter, when she was sixteen, and their son Karl was born the following year, 1852, on Appledore Island. The birth was complicated, and Karl's later physical and mental impairments were always traced to that circumstance.

[Image description: A black and white portrait of a young mother holding one little boy, while a slightly older boy is sitting nearby--caption reads: "Celia Thaxter with John and Karl, circa 1856. UNH"]

And soon two more sons were born, and the Thaxters were living on the mainland, and Celia was overwhelmed by a frustrating marriage and three little boys and the uncrossable distance to her mother and her favorite places. She started writing poetry, with her first published title, "Land-locked," revealing her distress. To a friend, she confided, "Oh, for your patience! How mine takes wings and leaves me forlorn and ugly and horrid!" (to Elizabeth Curzon Hoxie, 28 March 1857). Her letters from these years are full of loving stories of Karl's little boy antics, but as he grows older, the stories grow less charming, more troubled: "Karl and John do nothing but fight; they live on it all of the time; it's their bread and meat and drink." (also to EC Hoxie, 10 July 1861)

By 1869, Celia was visiting Appledore for long stretches, with Karl in tow, leaving Levi and the younger boys back. The summers in the Islands were meant to help Celia's aging mother; but they also kept Karl away from increasing rumblings, from acquaintances and even from Levi, that the boy should be institutionalized. On Appledore, he was safe from such pressures; and he was well away from the scrutiny of busybody neighbors, looking for a reason to criticize the youth. On the Island, he was happy and useful--there were frequent shipwrecks to clean up, with survivors needing assistance; there were elaborate gardens to be tended, and help around the house that he could do. He was still prone to odd behavior--"his poor head won't work quickly enough, you see," Celia wrote to an old friend--but on an island, Celia could mostly control the consequences.

In time, Celia sought more skills an adult Karl could develop, with an eye to his self-sufficiency. She arranged for him to learn photography, printing, and carpentry too, but none became a marketable skill, which was a constant concern for Celia. "I do not mind the thought of death, it means only fuller life, but there is a pang in the thought of leaving Karl," she wrote to Whittier in 1889. In the year of her death, she was still an enthusiastic gardener, with Karl by her side: "I work all day long, mostly out of doors, and there are so many pleasant things to do. Not easy, there is a great deal of hard work, but I love it all; and Karl is so good and helps me with the heavies, and we have such a good time together," reads a letter from April 1894.

That truly sounds lovely. However, there's a big downside to such cozy protected idylls: While she was alive, Celia Thaxter kept her son Karl safe, and well, and active. But Karl outlived Celia, and his last years without her were very difficult (he died in 1912, and is buried with his brothers and father at Kittery Point, Maine). His father was already dead, and his brothers didn't know him very well, or understand his needs. And neither did anyone else.

Celia Thaxter did what she thought was best for Karl, and she did it pretty well. But the lesson I read in the anguish of her later letters is that the protective carer/cocoon model isn't, in the end, a great response to the problem of disablism, because nobody lives forever, and no cocoon is permanent. Instead of trying to insulating ourselves completely away from the disablism of the world, appealing as that seems in the short term, and necessary as it may be at times, we'd surely do better to confront the disablism whenever possible, learn how it works, make alliances and work for change in our communities... or we'll always live in fear of the future.

See also:

Jane E. Vallier, Poet on Demand: The Life, Letters, and Works of Celia Thaxter (Down East Books 1982).

Julia Older, ed. Selected Writings (Appledore Books 1997).

Letters of Celia Thaxter, edited by her friends A. F. and R. L. (Houghton Mifflin 1895).

Norma H. Mandel, Beyond the Garden Gate: The Life of Celia Laighton Thaxter (University Press of New England 2004).

Perry D. Westbrook, "Celia Thaxter's Controversy with Nature," New England Quarterly 20(4)(December 1947): 492-515.

FINAL NOTE: I haven't published anything about Celia and Karl Thaxter, but I discussed them and other families in a conference paper a few years ago, and if you want a pdf of it, email me, I'll be glad to send it along. Here's the cite:

Penny L. Richards, "The Pure, the Delicate, and the Disturbed: Reading Developmental Disability in 19th Century Family Sources," paper presented at the January 2005 meeting of the American Historical Association, Seattle WA.

Get ready for Blogging against Disablism Day 2008!

Back for a third year, the event that is Blogging Against Disablism Day, once again hosted by The Goldfish on May 1. We've been thrilled to be part of BADD the last two years, and we'll definitely have a contribution this time around too. Last year, more than 170 bloggers around the world participated, and it was a great day of reading and commenting. Goldfish has once again declared "language amnesty" for the day, so use the terms that are right and best for your purposes in your part of the world, and expect that others will do the same. But do write something, and do read across the disability blogosphere on May 1--you won't be disappointed.

No more Ransom Notes

Happy news today (via Stephen Drake) from Ari Ne'eman of the Autistic Self Advocacy Network:

I am pleased to inform you that this afternoon the NYU Child Study Center
announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that
announcement here. The thousands of people with disabilities, family members,
professionals and others who have written, called, e-mailed and signed our
petition have been heard. Today is a historic day for the disability community.
Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the
NYU Child Study Center, I have obtained a commitment to pursue real dialogue in
the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.

It's the Blue Badge of Christmas, Tiny Tim!

A couple edgier vintage links for the heart of December: What's the Blue Badge of Christmas? Gimpy Mumpy explained this "very special" aspect of the holiday season in 2006. If you're sitting through one too many cloying depiction of Tiny Tim this season, William G. Stothers wrote the perfect perennial essay, "I Hate Tiny Tim." My favorite line: "When you think about a person with a disability as someone to feel sorry for, as someone to be taken care of and looked after, it is difficult to think about hiring them as a teacher, an architect or an accountant."

ADDED LATER: One more: Andrea's excellent disability analysis of "Rudolph the Red-Nosed Reindeer"....Eventually everyone decides to tolerate the mutant reindeer... but only because he can be useful to them...

In the news...

Update on the Rod Liddle editorial from last week's Times of London: today were published some replies (under the unfortunate headline "Coping with Disability"), including one brief comment, "I have no choice but to live with my disability, but I can choose not to be afflicted with Liddle's opinions." Unfortunately, when those ugly opinions are widely held, they're an affliction for all of us, whether we read them or not.

And big kudos to Joseph Shapiro, whose excellent NPR reporting from the Katrina zone this morning is worth a listen if you get a chance, here. Listen to a medical evacuation organizer tell Carmen Vidaurre that her son Joseph's wheelchair can't be loaded onto the plane. Listen to Curt Decker, executive director of the National Disability Rights Network, comment that "There were really three vectors involved here, race, poverty, and disability."

On the same subject, Marta Russell has a new commentary up at Znet today, Being Disabled and Poor in New Orleans.

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).