Digital Lit
When computers showed up, those little card catalog drawers were the first to go. Microfiche still exists, but after Online Catalogs came online waiting lists at libraries,and online Oral History or Art Collections, Virtual Booklists, Online Universities and their course catalogs. Online graphic novels etc etc.
Well in another reality that used to be science fiction, Google has begun offering free downloads of public domain works. Go to Google and this is the information about this new service just begun yesterday.
Off to curl up with a mousepad and a good book.
I chose Aesop’s Fables
How to approach this?
I have an incredibly emotionally supportive family. I love them, and they love me.
I’ve been self sufficent for a great amount of my adult life. They’re proud of that.
But I remember a frank conversation when I moved out.
“I’ve always wanted and worked for your independence and you’ve achieved that. I’m proud of that. But it isn’t just pride, you need to understand that it’s selfish. It’s my goal, and has always been my goal that you be self-sufficient and move out at XX age, and I admit it’s a selfish goal, because I’m planning on moving on with my life at that time.”
And a frank moment (like I have those, she said in self-mockery) that *I* had with a family member in the mid Nineties, when I was newly widowed and living alone, and feeling quite as unhinged as I do now.
“What? Excuse me, but do you see *anyone* standing in line to take care of me? Anyone? Anyone at all? F*** NO! Because if I’ve figured *anything at all out* is that the world does not owe you S**T!”
I don’t want to give the impression that I’ve never felt supported. There are plenty of places within my family, and my broader family of choice that I often recieve encouraging email, or chat with on the phone, or help of other kinds when I have screwed up, and even when I haven’t…and I get reinforcement that I have value, and I’m loved. That I matter to them.
However, whether this is right or wrong of me, I often find myself irritated with the positive adjectives. Two separate family members, whom I adore, one on each side of the family recently told me I was, and I quote: “amazing.”
This is something I need to reiterate to the circle of people, however large or small that read this thing and also know me offline.
Now, I’m doing better than I was when I freaked a bit here earlier in the summer, for some obvious reasons and with appropriate interventions….but I still have this sense of dancing on a balance beam across the Grand Canyon.
So, for my offline associates: It’s important that you read this and *hear* and understand the implications of it. And please don’t get all hurt and upset. I don’t mean for that to happen. I’m not angry at anyone. I just wish to be understood.
(Deep breath)
I am running out of ways to be “amazing.” Those words, even well-intentioned and well meant seem to me sometimes to be an effort to camouflage the uncomfortable realities in my day to day existence.
I no longer qualify for assistance because I’ve been working.
All the conditions, that led to my going on disability still exist. Some have improved markedly. Some are not improving.
There will be a time, I anticipate in the next ten to twenty years, when I’ll be off work and fighting the Social Security bureacracy to believe in cerebral palsy that I still have no original records for, and that various impairments, gut problems and asthma have begun again to affect me so much that I’ll not be able to continue working. And then I’d imagine I will very rapidly cease to be amazing.
Please don’t expect ‘amazing’ to last forever.
Well, that’s all for now….
…
Update #2
From Big Fat Blog:
“Update No. 2!: Well, a nice, nice turnaround has taken place here. Check out the comments: the current issue of the paper (no online link yet, apparently) includes very fat-positive responses, along an apology from Karla Starr. She’s also been answering all emails (per BFBers’ experiences) and has definitely changed her tune. Way to go to everyone who wrote in and handled this tactfully! And thanks to Karla Starr for listening and being open to discussing things further. Excellent.”
I have emailed Ms. Starr commending her and the paper for apologizing.
A "Journalist" actually got paid [Updated!]
to write this
I found this via Big Fat Blog.
And unfortunately for me and for the “journalist” in question, this was the original text that generated my answer
Are you a fatty? Want to be in a book? Waddle over to a computer, grab your typing stick (those sausage fingers hit too many keys at once, don’t they?), go to stacybias.net, and fill out the contact form for your chance to contribute to Bias’ FatGirl Speaks, a short-fiction anthology inspired by her event of same name.
I then emailed the editor:
Karla Starr, one of your reporters obviously thinks fat people haven’t been treated like acceptable scapegoats for *everything.*, society’s losers for long enough . Obviously she feels writing like the paragraph above is appropriate language to use describing to anyone who is overweight. She felt that in order to promote author Stacy Bias’ project she had to say this.
Here’s my answer included in the email and cc:d to the reporter:
Are you a fatty?
Yes and I’ve been working to be Healthy At Any Size (HAES to the uninitiated) since I was 17. I’m 44 now.
Want to be in a book?
Possibly, as long as Karla Starr won’t be one of the contributors. I don’t want my story mangled by the arrogant, nasty, ignorant, egregiously stupid prose above that you make the mind numbing mistake of paying her to write.
Waddle over to a computer,
Fat people, like thin people *Walk* to their computers.
grab your typing stick (those sausage fingers hit too many keys at once, don’t they?)
Oh. Okay. Demean fat people with the “sausage” remark *and* piss off those of us with disabilities for which typing sticks are important tools to level the playing field.
Yeah I’m a dual eligible. A heavyset woman with disabilities I’ve had from birth.
go to stacybias.net, and fill out the contact form for your chance to contribute to Bias’ FatGirl Speaks, a short-fiction anthology inspired by her event of same name.
Now, this paragraph shows some promise. She should have stuck with the facts (name of website, name of anthology.) It might have gotten her a C- passing grade in any Journalism 101 Class. Because, while factual, that paragraph, like the rest of the sewage in the piece, shows not an ounce of creativity, inspiration, positive humor, or a sense of who Stacy’s (the author of the project, not the author of this ridiculous blurb) target audience really are–human beings of any size worthy of respect because they are human.
Update 6:05 pm MDT:
Karla Starr has sent me a letter. There are a number of reasons I will not publish it here…a nearly identical response did get published in the comments to the post over at Big Fat Blog
I’m going to try and be as fair as I can without going so far as to publish her response. My reasons for not publishing it will become clear.
First, from my side I’ll admit to a vitriol in tone that far outweighed the importance of what anyone thought about that piece. So, for about a fifth of the intensity of my response, I apologize. Also it takes courage to admit an error, and if what I received is genuine, I admire her for having been forthright about her mistake.
Ms. Starr’s letter seems effusive….she makes a point of several items:
One: When written, Ms. Starr thought the piece “sarcastic” and “funny”
Two: She (and by implication her superiors), expected laughter rather than rage.
Three: She put down some of it to her own body issues.
Four: She apologized at length
… but this is the reason I’m not comfortable publishing it.
On the Internets, and email, there is always a difficulty regarding the tone of an email. On the surface it “reads” as genuine upset and a conciliatory move in the right direction…And, I’ll allow that I could be completely offbase with my cynical mistrust of same.
This could be a genuine “lightbulb” moment for the editor of the paper and perhaps Ms. Starr as well. I hope so.
But, there were ostensibly editors and controls in place that would have reviewed the original before it went out….So if someone put together this lovely piece of writing in order to avoid any more pointed verbal darts being directed at the Willamette Weekly, and those who report therefrom…
*While* they were writing it, if they continued to mentally snicker behind their hands at the project they discussed and the fat persons involved…
On the off chance that they are now merely continuing to believe and disseminate privately what they eschew publicly in a well written apology, then if I published her apology, I’d be just another candidate for “Ha! She actually *bought* that fairytale…You owe me a beer!” etc.
Fool me once…shame on you.
Fool me twice. Shame on me.
A great list
Hat tip to book girl and the No Pity Livejournal group listed at right:
Since I’m a relative newbie (a year and a half in) to being interested in discussing disability publicly, I’ve been looking for a list (or lists) that would allow me to go to my local library (or buy out of country stuff since the journaler is in Austrailia) that would allow me to play catch up a bit.
Those with Livejournal can read that list here. I can’t thank the original livejournal person, Book Girl enough. The copy/paste version is below:
Fiction
So Much To Tell You – John Marsden
(Acquired Physical Disability – Australian)
Apprentice Devil – Lisa Vasil (Epilepsy) and Dark Secret (Vision Impairment)
Gridlock – Ben Elton (Cerebral Palsy and Paraplegia)
Skallagrigg – William Horwood (Cerebral Palsy)
Stones From the River – Ursula Hegi(Short Stature)
The Little Country – Charles de Lint & The Onion Girl (both Acquired Mobility Disabilities)
Blood Songs – Penelope Rowe(Manic Depression – Australian)
Bone Truth – Anne Finger(Polio)
April Witch – Majgull Axelsson(Cerebral Palsy)
Not In The Calendar – Margaret Kennedy(Hearing Impairment)
The Deptford Trilogy – Robertson Davies(Physical Disfigurement)
The Poisonwood Bible – Barbara Kingsolver(Hemiplegia)
Non-fiction
Mother to Be: A Guide to Pregnancy and Birth for Women withDisabilities – Judi Rogers and Molleen Matsumura, eds.
Women with Disabilities: Essays in Psychology, Culture and Politics -Michelle Fine and Adrienne Asch, eds.
With the Power of Each Breath: A Disabled Women’s Anthology – Susan EBrowne, Debra Connors, and Nanci Stern, eds.
Mustn’t Grumble: Writing by Disabled Women – Lois Keith, ed.
Encounters with Strangers: Feminism and Disability – Jenny Morris, ed.
Past Due: A Story of Disability, Pregnancy and Birth – Anne FingerVoices From The Shadows:
Women With Disabilities Speak Out – GwynethFerguson Matthews
Claiming Disability: Knowledge and Identity – Simi Linton
Living Outside Inside: A Disabled Women’s Experience – Susan Hannaford
Different But The Same: Young people talk about living with seriousillness – Heather Cameron(Australian)
The Rejected Body: Feminist Philosophical Reflections on Disability -Susan Wendell[My note: The Rejected body was my introduction to reading in this field, and I still go digging around in it from time to time. ]
Women With Disabilities: Found Voices – Mary Wilmuth and LillianHolcomb, eds.
Exile and Pride: Disability, Queerness and Liberation – Eli Clare(Lesbian Issues)
Restricted Access: Lesbians on Disability – Victoria A Brownworth &Susan Raffo, eds.
(Lesbian Issues)
With Wings: An anthology of literature by women with disabilities -Marsha Saxton & Florence Howe, eds.
Carnal Acts: Essays
Remembering the Bone House: An erotics of place and space
Waist-High in the World: A Life Among the Nondisabled
Ordinary Time: Cycles in Marriage, Faith and Renewal
Voice Lessons: On Becoming a (Woman) WriterPlaintext: Essays – Nancy Mairs
Oyster Grit: Experiences of Women With Disabilities – Victorian WomenWith Disabilities Network(Australian)
Pride Against Prejudice: Transforming Attitudes to Disability – JennyMorris
Lives Worth Living: Women’s Experiences Of Chronic Illness – VeronicaMarris
The Sexual Politics of Disability: Untold Desires – Tom Shakespeare,Kath Gillespie-Sells & Dominic Davies, eds.
Female Forms: Experiencing and Understanding Disability – Carol Thomas
Women with Physical Disabilities: Achieving and Maintaining Health andWell-Being – Danuta M Krotoski, Margaret A Nosek & Margaret A Turk
Auto/Biography
Annie’s Coming Out – Rosemary Crossley and Anne McDonald.(Cerebral Palsy – Australian)Recovering: A Journal – May Sarton(Depression)
After the Stroke: A Journal – May Sarton(Stroke)
Bird and other Writings on Epilepsy – Susan Hawthorne(Epilepsy – Australian)
Listening: Ways of Hearing in a Silent World – Hannah Merker(Hearing Impairment)
Just An Ordinary Kid – Lisa Vasil(Cerebral Palsy)
An Unquiet Mind: A Memoir of Moods and Madness – Kay Redfield Jamison(Manic Depression)Daughter of the Queen of Sheba – Jacki Lynden(Manic Depression)
Spasm: A Memoir of Lies – Lauren Slater(Epilepsy)
Autobiography of a Face – Lucy Grealy(Facial Disfigurement)
I, Alison: Reaching for a Life of My Own – Alison French with VeronicaGroocock(Cerebral Palsy)
An Iranian Odyssey – Gohar Kordi(Vision Impairment)
Somebody Somewhere Nobody Nowhere Like Color to the Blind – Donna Williams(Autism – Australian)
Rusty – Carol Gino(Epilepsy)
Why Can’t Sharon Kowalski Come Home? – Karen Thompson and JulieAndrzejewski (Acquired Head Injury & Lesbian Issues)
Since I do not fit the profile of the “Compleat Feminist” or even the “Compleat Crip” I differ with some building blocks of some of the arguments of the tomes I have read in the Nonfiction section, but even the collections/books I see as very divergent from my own have a great deal to tell me, or anybody who reads em. If your library or bookstore doesn’t have them check out your local university’s “used textbook” section…you might find some older out of print copies. The out of country stuff is harder to get but even that is not impossible.
Midlife And Treachery 
